Hannah's Journey

January 31, 2012

2012-01-31T08:11:00.002-05:00

Hannah before diagnosis

Five years ago today, seems like it was just yesterday sometimes, Hannah was diagnosed with a brain tumor. It was a Tuesday, January 31st, 2007. The day started out like a "regular" day for Hannah, she didn't feel great when she woke up, although I don't think she actually threw up that morning. She had been declining all weekend, and we had called her pediatrician and I remember leaving a desperate message saying "do something, we know something is just wrong with her." He scheduled an MRI for Tuesday, and an appointment with a neurologist for later in the week (I think, we never made it there). So Tuesday morning, 9 am we went to the hospital, unprepared for the IV stick she was going to get during the MRI. I sat in the other room with the tech as he looked at the pictures when they came up on the computer screen. I know how unusual this now. I was asking questions like the whole thing was no big deal. I do remember asking him "can you tell when someone has something? Can you see it?" His response was "I have been doing this for over 30 years, and I know when I see it." He was probably screaming to himself "I SEE A HUGE MASS IN THIS LITTLE GIRL'S HEAD." I remember him coming out after the MRI to hand me a disc, he shook my hand and said "good luck." He knew, I know he knew.

After brain surgery

So after 5 years, I have learned a lot about a lot of things. I have learned that the human body is resilient. I saw Hannah and so many other kids go through things you can't even imagine and I can't even describe. I saw my daughter come out of major brain surgery and look like someone I didn't know. Wasn't prepared for that. Wasn't prepared for much of what happened on this journey. But with the many many bad things like paralysis, surgeries, mutism, screaming, crying, radiation, skin burns, vomiting, wheelchairs, incontinence, blood shooting out from her head across the room (not exaggerating here), chemo, and more vomiting, came some very good things. Good things like wonderful people, and giving, and support, and connections, and generosity of spirit, and love.

I have learned that even when you think you can't do something, you can. Or should I say, when you think your daughter can't do something she can. So many things she was asked to endure, and she did every one of them.

I have learned that some people surprise you. In good ways and in bad. People you know, and people you don't.

8th birthday

In the hospital with Jets players, though I don't know their names!

I have learned it's not all about the cancer patient. It's also about the family. It's about the other daughter that's left behind, without mom and dad together anymore. It's about her spending her birthday in Boston in the hospital because that's where her sister is, while mom is screaming "shut up, it's only hair." Yep, one of my more stellar moments. It's about grandma and grandpa who drop their lives, and come out to live with us for an extended amount of time so that everything continues to function for everyone left behind. It's about what you can't do by yourself that everyone else pitches in to do for you. And that it's ok to accept their help.

I learned that you can be plucked out of your life within hours and things go on. Imagine you sitting on the couch right now reading this, and by tomorrow morning, your'e in the hospital. And you don't come home for 6 weeks, then home for one day, then you're back in the hospital for another 6 weeks. Life at home goes on, and your focus is on your little space only and getting through that one day. You don't make any decisions really about what's going on in your "old life" although everything goes on.

I learned that everyone has their own burden to carry in life. Our burden was bad, others were worse. I heard over and over again "I can't imagine how you're doing this" or "you are so strong." Nope, we are no stronger than any of you, you do what you have to to get through each moment, each day. You see little glimmers of hope and of progress and you hold onto that and try to build on it. My answer was always "everyone has some kind of burden to carry. Everyone. Yours may seem smaller compared to ours, but in that moment in your life, they are every bit as heavy."

I learned the Red Sox are ok too!!

And one thing I'm still learning is that cancer doesn't stop giving. Five years post diagnosis, cancer free, Hannah is different and our whole family is different. Many dreams for Hannah were lost when she was diagnosed with brain cancer. It doesn't mean that all is in dire straights here. But, if I stopped to dwell on what was, what could have been, it wouldn't be all rosy now. It's still not all rosy now. But, things change for everyone, and it's different. I don't like to dwell, I like to try and focus on how far she has come. But, cancer keeps on giving, even five years later. And it's not a present you want to receive. It seems to me that after having cancer, you should get a free pass for anything after that. No foot pain, no learning difficulties, no emotional issues, no doctor visits and hospital stays, no eye issues/seizures, no everything in your whole life is changed. But that's not the way it works.

I said to Colby and Hannah just the other night that her 5 year anniversary of diagnosis was coming up. Colby said "let's have a party" and Hannah said "until I get it next time." Just shoot me now.

Hannah and Tod

♥Kim

Thursday, January 12, 2012

2012-01-12T21:03:00.000-05:00

The new year has started with more doctor appointments for Hannah. We met with her neurologist on January 3rd. Just before going into the appointment, we were able to videotape one of Hannah's eye episodes to show the doctor. I really think it made an impact, much more than me just telling them time and again what is happening, and them finding nothing on any tests or exams. But, while the doctor was interested in the video, still no ideas what is going on. It's frustrating. The doctor showed the head of neurology also, but they decided that without concrete findings of seizures, they were going to hold off on treating her. Unless any changes occurred, we were to just remain status quo.

Hannah also saw her endocrinologist, whom we really like, this week. He explained the levels to me, all is fine. Her IGF (growth factor) is within range and has continued to increase with her age, which is good. She will have to have a bone age and bone density scan in June, nothing until then. He also saw the video of Hannah's eye episodes, but no ideas. There are blood issues that could cause eye disturbances, but they would cause the eyes to stay deviated, and he explained that there would be many other symptoms also.

EEG #4

Earlier this week, Hannah began complaining about having more eye episodes, and that many of them were longer. I picked her up on Monday and she had had 10 episodes and told me we "really needed to do something about them." Yesterday, she had 4 episodes in the first hour of school. She also didn't feel well, and came home to spend the rest of the day in bed. I called neurology to see if they wanted to start her on medicine, and they asked to see her today. In we went this morning for another (her 4th) EEG and to meet with Dr. Maytal, the head of neurology. I find neurologists to be some of the most interesting (um, that's a nice way of putting it) doctors. I could barely understand him, not sure what nationality he was but I really had to focus to catch every word he said. He didn't want to call these seizures, just not enough evidence, but prescribed medicine to begin.

We then went over to cardiology for Hannah to be evaluated. Our neurosurgeon had advised us that sometimes "cardiac arrhythmias can cause transient neurological issues." Hannah's exam was normal, but the doctor wanted to monitor her heart function while she was having the eye episodes so she is wearing a 24 hour halter monitor. She has already had one significant eye episode, so we'll see if they find any heart correlation. Dr. Seiden, the cardiologist we had never met before, was a very nice doctor, who was interested in the issue and suggesting possible other causes to check into. He did mention something about her current medicine for anti-nausea and the possibility for it to cause dystonic spasms (involuntary eye spasms.) Now, we have seen many doctors throughout this eye problem journey and none of them had suggested we look into her medicine (although I know I discussed it with her oncologist) so I know it's far fetched.

I sent an email today asking her oncologist to call me tomorrow to discuss possibly taking her off the anti-nausea medicine she is on to see if it makes a difference. They will have to substitute another, so not sure if it's worthwhile, but I would like discuss this option with him before jumping to the seizure med. Wouldn't that be great if it was as easy as just a change in her medicine!

So that's what we've been up to. Hannah has missed a lot of school for all these doctor appointments (and she has been sick twice lately as well.). I received a note from school about her absences already, but they have assured me it's not an issue, especially in 7th grade and considering her history. It just makes it difficult for her to keep up with everything. We're doing lots of work at home, when she's feeling well, and so far she has kept up. Oh how I'm coming to love homework!!

That's all for now, will check in again soon. If I get a chance, I'll post a video to let you share in the eye episode experience!!

♥Kim

Monday, December 26, 2011

2011-12-26T13:39:00.001-05:00

Merry Christmas and Happy New Year to everyone! I realized I didn't update after Hannah got out of the hospital. No news is good news I guess. No news is what we got. Her EEG showed nothing, which is good and bad at the same time. At this point, the doctors don't have a diagnosis, but their best guess is some kind of partial seizure. I think their second guess is that I'm crazy or making this up, so we'll stick with the first choice.

After our hospital visit, Hannah had a check up with a neuro-ophthalmologist. All was clear. He suggested it could be some kind of seizure or a nervous tick of some sort. Again, going with option number 1. I spoke at length with Hannah's pediatrician, who believes these eye episodes don't have any characteristics of a nervous tick. He hasn't seen anything like this either.

We prepared a big packet of information to be sent to Hannah's radiologist that treated her in Boston and she is going to review it for us. She already told us that this isn't something they have seen in medulloblastoma kids treated there for radiation, so we know it's not a common side effect.

We also sent an email to Hannah's neurosurgeon. He recommended a cardiac evaluation for Hannah. He said that sometimes cardiac arrhythmias can cause transient neurological issues. That is next on our list after the new year.

We meet with our neurologist on January 3rd. We were told in the hospital that they recommended trying an anti-seizure medication to see if that helps. If it does, it's a seizure. If not, it's not. That's what I call pretty sophisticated medicine!

Hannah did have bloodwork at the beginning of December to prepare for her endocrinology appointment in a couple of weeks. It looks to me like a few of the levels are off, namely her IGF (growth factor) as well as the Vitamin D (some of it). These results are usually pretty difficult to interpret, for me, so we will wait and see what the doctor recommends. I do know that her growth factor has not been this low before. Courtesy of her radiation, thank you very much.

We are in Indiana for Christmas, at Grandma and Grandpa's house, so everyone is happy. We don't have any snow this year, so no sledding, but lots of other fun things. We're off to see a movie in a bit! I will update again after the new year. We hope everyone has a safe, happy and healthy 2012!!

Love,
Kim

Thursday, December 15, 2011

2011-12-15T22:16:00.000-05:00

The best laid plans don't always work out I guess. Hannah went to school on Wednesday, but called me in the morning to say she had already had two eye episodes, one of which was longer and blurrier than ever before. It was really beginning to worry Dave and I since these were coming on quicker, more frequently and were now lasting longer.

I contacted the neurologist and asked her if we could come in right away. After some back and forth, she made it happen and Hannah and I headed in after school on Wednesday. We are not at our usual hospital, but their sister hospital just up the road. Our usual hospital is so full that there are NO beds available (kind of appropriate around Christmas time I thought...inn...manger...) We didn't want to wait, so we opted to come here. They told us it might even be a bit nicer for us since their pediatric unit is much smaller, and probably quieter. Unfortunately that hasn't turned out to be true though.

We made it up on the floor and into a bed by 8pm on Wednesday night. We were here and all set for neurology to come up and start the EEG but our nurse informed us that everyone in EEG was gone for the night, and nothing would happen until the next morning. WHY IN THE WORLD WERE WE HERE THEN, I asked her nicely :). Just another of the fun little frustrations of the hospital world. So we got over it and settled in for the night.

The next morning they came in bright and early to hook Hannah up. The tech asked why no-one paged them last night when we got here, since they were waiting on Hannah and someone was here until 11pm. WHAT??? Are you kidding me?? Nothing we could do, so just shrugged it off and got on with the day. She has been hooked up to the video EEG now for over 12 hours. She has had exactly ONE eye episode, and a very brief one. Murphy's Law...again...I don't know. We wait.

Tomorrow she is scheduled for an MRI of the orbits. This will check the optic nerve amongst other things. She will also have a neuro-ophthalmology consult. They originally said they would like the EEG for 24 hours, but I don't know if they will extend it or not. It's frustrating at best.

She did spend some time today doing crafts that Childlife brought in. It really reinforced our commitment to providing the hospital with fun things for kids to do. Hannah was talking about what we should buy to bring in with our next Cans for Cancer shopping spree. Some of the things she likes the best like ceramic painting I'm sure other kids like also so that's what she wants to buy.

She just settled in to sleep. We'll see what tomorrow brings and I'll check in later. I do have to mention that the likelihood of me getting out any Christmas cards on time this year is nearly zero, so please don't think I forgot you. And, I am thinking of starting a new trend also of only putting lights on my Christmas tree. Maybe the star on top, but no ornaments. I think it will be nice, don't you?

♥Kim

Tuesday, December 13, 2011

2011-12-13T21:49:00.002-05:00

So, the good stuff first. Hannah and I went into clinic today and delivered the gift cards from our gift card drive. We delivered 15 $50 gift cards, a total of $750 for families in need. THANK YOU everyone for your donations, these special kids fighting this terrible disease will be a little happier this Christmas season. The families will feel just a little lighter from their tremendous load, and that is what this is all about now isn't it? Thank you!!

Gift cards!!

Now for the medical stuff. Hannah was hooked up last weekend with the portable EEG. She had it hooked up last Friday afternoon around noon and we were to keep it on until Sunday, but could take it off earlier if she experienced several of the eye episodes. I say "we" like I was wearing it, but she was the unhappy recipient. Here are a few pictures, they had her head wrapped up like she had brain surgery! The leads, 23 in all, were attached all over her head, and two to her chest. These wires came off the back of her head and hooked up to the EEg machine, which she carried around. I told her she looked like the bionic woman, but she never quite understood that!

The button

It was pretty uncomfortable, the wrap on her head was tight so that it didn't come off. Each time she had one of the eye episodes she had to push the red button and I had to record it. It didn't seem like a big deal, she had been having 2-4 episodes a day. She didn't have her first episode for 30 HOURS!! I thought I was going nutso, and maybe we had just imagined it all. So on Saturday night around 7pm she had her first one, and the second one followed 20 minutes later. She wanted to take it off right then and there, but we left it on to try and record some more episodes, since they told us the more the better. She didn't have another episode until Sunday night around 6pm when she promptly announced she was taking it off immediately. It was pretty tough removing the leads, which were stuck in her hair. She said she wouldn't have any hair left by the time we got them all out!!

Didn't stop her from baking!

But she wasn't that happy about it!

So today we returned to clinic to hand in the portable EEG and meet with all the doctors to go over the results. As soon as we got there, Hannah had one of the eye episodes, but of course there were no doctors there yet. First, our oncologist confirmed that Hannah's latest MRI/MRA results were good, no tumor or any other structural issues which may be causing these eye episodes. A big breath out on that one! The neurologist then came in to say that the EEG produced no measurable seizure type activity, even when Hannah pushed the button and recorded the eye episodes. I wasn't sure if this was good or bad.

Everything off and not happy, it hurt to remove everything!

With the head wrap off

The doctor explained that sometimes this happens, and they thought that most likely these were not seizures. Ok, so what the heck are they? The doctor immediately said she wanted Hannah to be admitted for a video EEG. She explained that the video EEg in hospital would be more detailed, and also allow them to see her episodes through the video. The doctor picked up the phone, and I thought we were headed right upstairs!! They had an open spot for this Saturday (but Sunday is Dave's birthday) or next Tuesday (but that is Hannah's first junior high school concert.) I asked if it was an immediate need, or could it wait until after Christmas. We are leaving to go to Indiana on the 23rd, returning on the 29th. The doctor asked if the episodes had changed, were they becoming more frequent or longer? The answer (at that time) was no. So, no rush, and we scheduled our hospital stay for December 30th. With any luck we would be out of there sometime the day of the 31st and wouldn't have to pop the champagne in the hospital. But, if so, that was ok too.

The neurologist also wanted an optic MRI, which would focus on the optic nerve. The previous MRI had already confirmed that there were no tumors in her head, so that is good (great) but perhaps something else is going on in the eye that a regular ophthalmology exam could not pick up. Ok, that sounds reasonable. That also means another trip to the orthodontist to have her braces removed...again. She has ceramic braces for this purpose, so only the back 4 brackets and all the wires have to come off, but it's still an issue for her and she cries when they come off and cries when they go back on. We had waited to do braces until we were pretty set with only 6-12 month MRIs, but that didn't quite work out for us!!

So all is set, we head back home. We walk out of the office and Hannah has another eye episode, her 3rd of the day. All is still good. Dave and I discuss the need to get her records together again to send out to our radiation oncologist at Boston where she had her radiation, and her neurosurgeon to get their opinions. It's always good to widen your circle of doctors examining the records, especially when the current doctors don't have any answers yet. Not that they aren't good doctors, but it's possible another doctor has seen something like this before and could help.

Hannah and I get home, we're at the school picking up Colby from her basketball game, and she has another episode. She tells me, I check her out and I think it's over. She walks away, comes back 2-3 minutes later and says it's still going on. So now, we have what looks like higher frequency of episodes, along with longer episodes...both things the doctor questioned me about. So now I'm having a mini freak out moment! That's it, I go outside and call our doctor right away and tell her we want to move up the EEG and MRI to this weekend. Of course now it's after 5pm and everyone is gone for the day. So, we will wait until tomorrow and hope they can still get us in for this weekend. I told Hannah we'll make it like a party, watch dvd's the whole time and play games and cards. I believe she can't get out of bed at all, so I'll be like the Energizer bunny hopping around her bed to keep her entertained!! So looking forward to that!

We'll keep you informed, I hope we have this all worked out and scheduled tomorrow!

♥Kim

Saturday, November 26, 2011

2011-11-26T22:55:00.001-05:00

We went in today for Hannah's MRI and MRA. We were surprised to find out that both would only take about 40 minutes total...yippee! We were expecting about 90 minutes so that was a nice surprise.

Hannah was a trooper as always. She laid so still the whole time, and did really well with the iv for the contrast. We were happy to see that the MRI tech was one of our favorites, again another surprise since it was Saturday! This lady always gets it in on the first stick, which is key for Hannah.

Since it was Saturday, none of our doctors would be there to get the radiologists report after he looked at the scans. I had contacted them to ask if the report would be read, and if anything was found if they would be notified even though it was the weekend. They confirmed that they would be notified if anything came up, otherwise we would hear something on Monday from them. That puts all kinds of thoughts in your mind like, what if they find something and it doesn't get relayed properly, and we wait with this false sense of security until Monday, but then we get bad news?

I happened to notice that right next to the MRI room, is the radiologist room where I saw the doctor sitting and reading scans. Guess I had never noticed this room before, it's tucked away. I asked our tech if she would ask the radiologist if he would read Hannah's scans and talk with me while we were still there so we didn't have to wait the weekend. She said we were in luck, it was one of the "nice" doctors and he agreed to read them and meet us out in the waiting lobby afterwards. We only sat for about 5 minutes before the nice doctor came out and told us right there in the lobby in front of whomever was there that the scans looked good and were all clear!! Hallelujah!! I don't even remember if Hannah was listening or just sitting in her wheelchair watching tv, I was just focused on the doctor. What do they do if it's bad news? Do they take you in the other room or just blurt it right out too? We don't have to find out, phew!!

The doctor asked me what we were looking for with the tests, so I told him about the eye issues. He suggested that they order an optic MRI which won't focus on the brain this time, but specifically the eyes. I will talk to the neurologist about this at our meeting in December. I just wanted to hug him right there, but just shook his hand instead (for which he is probably thankful!!)

So this does bring the question, what is next? Hannah will have a 48 hour EEG beginning December 9th, where they hope to record her brain waves during one or more of these episodes. After that we go to clinic to see our neurologist and oncologist for discussion and results. Hannah is still having the episodes regularly. She tells me when she has one, and I have seen many of them up close. Her eyes shift slightly off to the right and she can't move them back to center to focus on me. She talks through the whole thing, is not incoherent, or acting like she is having any type of seizure. It only lasts about 20 seconds or so, then it's gone with no residual effects. Very odd and a little unsettling to watch.

We celebrated afterwards with our traditional 10,000 calorie lunch at Olive Garden. It was so much nicer eating already knowing the good results.

Thanks for all your kind words of support, we'll continue to move forward with this last test to see if we get any indication of what this might be. Thanks also for your donations sent for our holiday Gift Card drive. So far we have enough collected to donate seven $50 gift cards for those families in need of support during the holidays (and there are many). We will be delivering the cards to the hospital at our clinic visit on the 13th of December, so there is still time if you'd like to get in on the fun! Please email me with any questions at kprokop@optonline.net.

♥Kim

Wednesday, November 16, 2011

2011-11-16T20:27:00.001-05:00

We spent the day yesterday meeting our new neurologist, amongst other doctors too. Hannah's neurological exam was normal with no glaring issues. The doctor was very thorough and very smart. She said right away that she wanted to order an EEG, an extended EEG, a neuro-ophthalmologist visit, an MRI and an MRA. This brought to light for me many things I hadn't thought about before about Hannah's eye issues. The doctor said we needed to start here and rule out things for Hannah. The EEG's were to rule out seizures, which are common among brain tumor survivors, the ophthalmologist visit to check for any obvious neurological related eye issues, the MRI to rule out recurrence, and the MRA to check for stenosis (narrowing) of the blood vessels in the brain due to radiation. None of these options are particularly attractive, as they all carry their own consequences.

The doctor knew we came from a long distance away, so she immediately called and sent us over to the hospital for the EEG. She then called and set up another appointment for Hannah to see the neuro-ophthalmologist. These doctors can really make things happen quickly when they want to. It would have taken us weeks to get in to do these on our own!

We headed over to the hospital, thank goodness for our GPS, especially because I'm not the greatest with directions (I can hear my mom and dad laughing right now) and we were somewhere in the middle of Queens (I think.) Let me just say that GPS has no way of knowing where they send you, but they get you there usually the quickest route. We were lucky to make it through the neighborhood we were in! They took Hannah right in for her EEG, hooking up the electrodes to her head. It was a 20 minute test and they hoped that one of these "eye moments" would occur so they could catch it on the monitor. Hannah said right away that it didn't happen and the tech confirmed that it was normal. To stick the electrodes to your hair, they put cream on the end and cover it with cotton. After the test, the tech started to scrub, and I mean scrub, Hannah's head to remove the cream. She was using a wet towel, so Hannah's hair was wet and all tangled when the lady was done. I could see that Hannah was crying, but I wasn't sure if it was because the lady was hurting her or because she was mad. I think it was both.

Then we left to meet with the ophthalmologist. Hannah sees 20/20, much better than her mother. The doctor said she has a cataract in one eye, courtesy of the radiation, but it was not large enough to cause any eye issues. She also has dry eye, slightly, another result of the radiation. The doctor said it could be causing her symptoms, possibly. Seems a bit far-fetched to me but we'll try eye drops just in case.

By this time, Hannah's eyes were dilated and she was done. We got home about 7pm. It reminded me of the days were used to go in early for chemo, and get home late. Long hours and bad food. The neurologist called just after we got in the door to say that she had already spoken with the EEG doctor and the eye doctor and wanted to be sure I knew the results! Now that is something! She had also spoken with oncology about setting up the appointment for the MRI and MRA.

We set Hannah's MRI/MRA for Nov. 26th, the Saturday after Thanksgiving. This Tuesday we are going to get the metal part of her braces removed. Most of the brackets are ceramic, but she has 4 that are metal plus the wires that have to come off for any MRI. Then, the Monday after the MRI/MRA she goes back to get everything back on. This didn't seem like such a big issue when her MRI's were only every 6 months. Well, not such a big deal, we just have to do it.

I asked the neurologist what her thoughts were about what this might be and she said she really didn't know at this point, so we have to rule out the obvious first. She also said she has kids that have these types of symptoms that have never had a brain tumor. I'm taking that as her way of telling me that it's not necessarily recurrence! You have to go with the positive!!

Thanks for your prayers and support, we'll let you know as we progress. Thanks also for your donations and gift cards, we received more in the mail this week! We are going to deliver the gift cards to the hospital on December 13th, when Hannah goes back to brain tumor clinic to follow up with the neurologist and oncology, so we have until then!!

♥Kim

Monday, Novebmer 14, 2011

2011-11-14T14:23:00.001-05:00

Just a quick note, please keep Hannah in your prayers tomorrow. We are headed to see the neurologist. Hannah told me last week she has been having "dizzy" spells. She hasn't really been dizzy though..she decribes it as her eyes "go fuzzy" and she can't see. I thought it was one or two times, but eventually she told me that it's been every day!! Kids...she is just so nonchalant about it, like it doesn't matter that she had a brain tumor and this is nothing! I'm glad she isn't freaking out about it though, because I'm doing enough of that for the both of us!

Hannah's next MRI is due in January, so I'm thinking maybe they will move it up a bit? Or maybe the doctor will find nothing. Or maybe she needs glasses. Or maybe ??????????? Taking it one step at a time, and hoping for the best. She has been a little off these last fews days too, Saturday morning she felt truly dizzy when she got up and said she felt sick. Last night she was up most of the night, just couldn't sleep and said her stomach hurt as well. I was a bit surprised when I went in her room at midnight and I heard a little voice "hi Mom!" I was in her room with her until 1am when she was still awake lying with a cold cloth on her head.

She just came in the door from school and said she feels "horrible" with a headache and a stomach ache. Lots of things are going around right now in school, so you never know. But please, keep her in your prayers for a good report from the neurologist tomorrow.

While I'm here, I want to mention our CHRISTMAS GIFT CARD DRIVE. Thank you to those who have already sent in cards to help the children and their families this year. While you're out shopping, please consider purchasing a gift card to help us donate to those kids who may be spending their holiday in the hospital this year, or at home with no gifts due to financial burden cancer has placed on their families. You can purchase a card from any big name store-Target, ToysRUs, Walmart, or a generic Visa/Mastercard/American Express for any amount $25 and up. You can purchase generic Visa/Mastercard/American Express cards at your local grocery and drugstors.

Hannah at Christmas last year in NYC

You can also make a donation, and we will purchase the card for you. Paypal the money to us at kprokop@optonline.net or send a check. Hannah's Cans for Cancer, Inc. will be purchasing several cards to be distributed to families at the hospital this year, can you help us? We will be distributing the cards to the hospital the week of December 12th.

Please send Gift Cards and monetary donations to us at:

Hannah's Cans for Cancer, Inc.
Hannah Prokop
1556 Grand Avenue
Mattituck, NY 11952

Thank you!!!

♥Kim

November 5, 2011

2011-11-05T21:54:00.003-04:00

Hannah putting together the bags

Hannah's Cans for Cancer sponsored Halloween again this year for Cohen Children's Hospital. We put together 450 goodies bags for the hospital to hand out during Halloween week. One hundred of those were npo bags-without food or candy, for kids who aren't able to eat while at clinic. We also put together 4 special baskets of goodies for kids in the bone marrow transplant unit. Those kids can't have anything that can't be washed down, nor anything live or from the ground (pumpkins) they are in isolation.

We also took 175 pumpkins for the kids to decorate. We provide them with foam decorating kits for the pumpkins and they go to town! Thank you to the 3 local places that donated the pumpkins-Krupski's, Helen's and VerDerBer's. They all generously donate each year without hesitation.

washing the pumpkins

tired after all that washing!

This year Hannah dressed as a penguin for Halloween. She was hesitant to wear her costume until she sent her friends a text of the costume and they approved, phew!! She had a good time that night, getting lots of candy and doing a great job of keeping up with everyone, even while yelling over her shoulder at me "MY FEET HURT!!" She was happy, I was happy. I was remembering those days not that long ago when she had to sit and be pulled in the wagon, too tired to get out and walk with her friends!

Hannah's Cans for Cancer has been busy too! We held a magazine subscription drive to provide some magazines for the kids and the parents at the hospital. Hannah's school was holding a fundraiser and she wanted to order some magazines. Our family really didn't need any magazines, so Hannah suggested we get some for the hospital. What a great idea!! We put the word out on facebook and thanks to all of our friends, we were able to get a total of 20 subscriptions. Our hospital childlife friends were very happy to hear that will be receiving magazines very soon to use in their clinic, and inpatient area. A big THANK YOU to everyone who stepped up and donated a subscription!! What a response!!

We're preparing now for Christmas. We have adopted families for the past few years, helping out those that couldn't provide anything for their families at Christmas time. This year, we are continuing the tradition, helping out even more families. We are holding a GIFT CARD DRIVE!! We will deliver the gift cards to the hospital before Christmas so that they can pass them out to needy families. The families can then use them to buy gifts, or food, or gas, or whatever they need! We will be able to help many families, with hopefully, MANY gift cards!!

Please consider helping a family for Christmas this year. These are families who have a child struggling with cancer. These are families who may not know about their future together as a family. These are families who are spending most of their time at the hospital, if they can, with their child as they watch them struggle through radiation that burns, chemo that hurts, transfusions, iv's, needle sticks, transplants, and tears. It's not easy, especially during the holidays. So while you're out shopping this season, please consider picking up a gift card. They can be visa/mastercard/american express or any major store like Target, ToysRUs, Walmart, etc. Or, if you would prefer you can send cash and we will purchase the gift card for you. Please send gift cards/cash donations to us at:

Hannah's Cans for Cancer, Inc.
1556 Grand Avenue
Mattituck, NY 11952

You can also send money via paypal to me at kprokop@optonline.net. Thank you for helping us help the kids this year!!!

♥Kim

Sunday, September 11, 2011

2011-09-11T23:16:00.000-04:00

Today goes without saying, we are all remembering the events of 10 years ago today. A sad day, a day to remember all those that died, all those that survived and all the heroes.

To begin, I just noticed that I had written a post back in July but I never published it. I just sent that out, so if you received it by email, this is why you are receiving two emails this time. If you are reading this on the blog, scroll down to the July post to read a bit of history!

Summer is over here, the girls are back in school. We spent a week of fun in Indiana, Wyoming and Montana in August. The girls and I traveled to Indiana and spent a week at my parents house doing chores like this........

Cutting grass with Grandpa

...and mostly having lots of fun. We met Dave out in Wyoming. He had our trip planned out, hiking in the Grand Tetons, hiking in Yellowstone. We also went horseback riding, whitewater rafting, site seeing, saw Old Faithful, hot springs, geothermal pools and much more. Check out the buffalo walking down the middle of the road in Yellowstone-right next to our car! If you ever get the chance to go out west, it's really worth the trip. Hannah didn't particularly enjoy all the hiking, but I have to admit, it wasn't as difficult as our Canadian hikes last summer.

Hannah with an Elk

Our pet buffalo

Waterfall in Yellowstone

Old Faithful

We started school in New York just this past week on the 8th. I don't think any of us were ready to go back. Hannah was very apprehensive to say the least. She had consistently told us that she "wasn't going to 7th grade." I did mention to her that she would have an aide to help her out, get her from class to class and her comment was "do I know this person?" "No, probably not," I answered. "Well then what good is that?" she said. That's Hannah, black and white. I did receive a surprise call in August from Hannah's aide she had in elementary (grades 2-5.) She told me that the school had placed her with Hannah for 7th grade! Alleluia that was great news. I waited until nearly the start of school to tell Hannah, just in case a change was made. When I told her that Mrs. W. would be her aide, it was almost like a wave of relief washed over her. She stopped saying that she wasn't going to school and seemed more open to talking about it. We met with her school counselor, we took tours, we tried to get as comfortable as possible with school.

That first day last week I was like a robot, trying to act like everything is normal, while worrying that Hannah would get out of the car and walk into school by herself. The night before, Hannah kept yelling out after going to bed..."text Mrs. W. and make she she will meet me inside the door at school." Text Mrs. W. and ask if she can stay with me the whole time." "Text Mrs. W. and make sure she knows the right door tomorrow." She was yelling things out for about an hour, at which time I told her I would no longer be able to hear her because I was going upstairs to bed, so she had better stop yelling (and now also coughing) or she would have no voice in the morning. Oh, did I mention that Hannah had pneumonia the week before school? It began while in Indiana, continued through our vacation and because she was still coughing a terrible cough when we returned, I took her to the doctor. Bingo...pneumonia. She didn't feel badly, but definitely had fluid in her lungs.

I digress...she got right out of the car in the pouring rain and thunder and walked down the long sidewalk and into 7th grade. I cried, yes I did.

So we're on the next leg of our journey now, jr/sr high school. Day one went great, day two she said she wasn't getting out of bed. I told her "get out of bed and knock it off, it's only Day 2." Maybe I'll start a countdown calendar like we had this summer for their cousin Sydney. Wonder how many days left?

♥Kim

Thursday, July 28, 2011

2011-07-28T22:52:00.004-04:00

Hannah had brain and spine MRI's this week with GREAT results...all clear!! Hannah remains cancer free!! It was a very long day for her, we left for the hospital at 10am and didn't get home until 10pm.

On the way, we stopped off to deliver two bunnies to Hannah's favorite nurse from clinic-Antonella!! All of the bunnies are now adopted out, yippee!

We had planned to head over to Olive Garden for lunch then, but neither of us were hungry so we headed in early to the hospital. We met Faye from childlife to deliver a car full of toys!! Thanks to a donation from a local lady (thank you so very much Susan) we had two full carts of toys to donate.

We headed over to clinic and they got us right in. Everything checked out well. Her oncologist was happy with her growth since last time and although she is still on the short side, she IS growing so there is no need for growth hormone (which I probably wouldn't give her anyway.) There is no explanation for her continued foot pain. The doctor recommended getting some good tennis shoes to wear for sports and activities and wearing her orthotics (oh no, not those, you mean the ones with dust collecting in the corner of her room!!)

MRI said they could try and fit us in at the open spot used for emergencies at 3pm. Our original appointment time was 4pm. We headed down promptly at 3pm and sat there. And made pom pom animals and sat there. And froze in the 50 degree temps down there and SAT there. They didn't get us in early. They didn't get us in at our regularly scheduled time. They didn't get us in until 5:30pm. We sat there for 2 1/2 hours before we went in for a 2 hour MRI. I don't know how she did it, but she laid still for so long after sitting there waiting for so long!! Frustrating!

I just tried to keep her distracted and happy (how do you think that worked?) We were both more than ready for our Olive Garden traditional dinner afterwards. We headed home and had quite a lightening show on the way, getting home about 10pm. We were pooped!!

I called for results the next morning at 10:30am, which I thought showed quite a bit of restraint. No results yet, was told to call back at 2pm if I didn't hear earlier. I called again at 2:30pm and left a message. When the PA called back I knew it was good news. Last time the doctor called me back and that sends all kinds of red flags up immediately. Our PA, who we really like, gave Hannah the news first on the phone, which was interesting. No changes (still shows the area of mystery, but it is unchanged.) Phew!!!!

So it's back to our summer fun. Hannah is playing tennis and swimming on the swim team, Colby is playing lacrosse, basketball and spending a lot of time at the barn. We are looking forward to their cousin Sydney arriving this Sunday. She will stay until August 9th when the three girls will fly to grandma and grandpa's house by themselves. I will follow on August 12th and then on August 18th we will meet up with Dave in Jackson Hole Wyoming to spend time at Yellowstone and the Grand Tetons. Looking forward to that...although said she is NOT hiking!!!

Thanks to everyone for all your well wishes and support! Enjoy the summer!

♥Kim

Sunday, June 12, 2011

2011-06-12T22:25:00.013-04:00

Relay for Life has come and gone, Hannah's birthday has come and gone, my brain has come and gone...ha ha. Above is Hannah's traditional photo of her with her luminaries, this was taken at the very end of the night for her, after she had asked to go home NOW..so I'm glad it came out as well as it did.

We had another wonderful year at Relay. Our town planning team does such a wonderful job with everything. We ended up this year with 62 luminaries, thank you to everyone who once again supported our team by purchasing a luminary. I have some very nice photos, and will forward them shortly.

This year we had a prize wheel, with lots of great prizes, an ice cream cart-which was fantastic but would have been even better had the temperature not dropped by 20 degrees and everyone was freezing, and Hannah's pick a duckie game. In total our team raised $2272!! We do this event primarily to celebrate Hannah and ALL the cancer survivors. Hannah really enjoys going and celebrating, she does get special treatment as a survivor! We did see our little friend from last year, Thomas, but did only saw him from afar and couldn't find him again. I sure hope he's doing well, he looked great!

Relay was on Saturday, June 4th, and Hannah's birthday was Monday, June 6th. We celebrated at home with her requested meal-ravioli. Followed by a crazy cake-she always wants the craziest cake possible. I can't believe she is 12 years old now, 5 years from her cancer diagnosis. What an accomplishment. There were times I thought she wouldn't make it to celebrate her 12th. What a truly joyous night it was for all of us.

Hannah had her sleepover birthday party this weekend. We had so much planned-she is a big planner-and it rained. At first, it was a light rain and the girls spent the first 2 hours in the pool so it didn't matter. Then it POURED down rain, for hours! We had planned a campfire with smores (and the biggest marshmallows ever seen) followed by manhunt with special flashlights we had found for everyone. Well, plan two, we decorated sugar cookies (that I made at the last minute), played Wii Dance, and indoor hide and seek with glow necklaces and bracelets all over their bodies. They had fun and I collapsed into bed around 11:30pm.

We're on to graduation now. The girls are still in school, Colby is done this week and Hannah on the 24th. My parents are coming out for Hannah's graduation, so everyone is excited about that. They should arrive on Thursday. More to come soon!

♥Kim

Saturday, May 14, 2011

2011-05-14T08:37:00.006-04:00

Hannah and I traveled to Boston on Sunday to be there for her scheduled neuropsychology testing on Monday morning. We went up early on Sunday and went the aquarium, one of Hannah's favorite places when we stayed in Boston for radiation. We walked around, went to the aquarium and then Hannah took me out to our favorite seafood restaurant in Boston for Mother's Day!

The neuropscyh test is a measure of Hannah's cognitive functions. It's a very extensive test and very long! The test normally takes 3-31/2 hours. Hannah's took 5. She came out about half way through and was upset. They had asked her to names the months of the year backwards, which she had trouble doing. I wasn't surprised the testing took so long, it was the same last time she had the test-three years ago when she was 8. The radiation has severely impacted her processing speed, among other things, so while she can get to the answers, she works slower. The test is very helpful in identifying all of Hannah's brain function issues, and we use it with the school to formulate her IEP and make the accomodations she needs to be successful in school. We should have the results in about two weeks, I'm not anticipating there will be any major changes from her test results in the past.

We also stopped by the proton center, where Hannah had radiation back in 2008. We got to see a few familiar faces, the place looked the same. I was holding it together pretty well until a little girl bounded out of the back, skipping along with her bald little head. I just had to turn around, it was hard to see being on the "other side." of things now. Knowing just how hard it is for that little girl right now, and how hard it may become.

We're still gearing up for RELAY FOR LIFE coming in just a few short weeks. I sure hope it's warmer by then! We're not planning on spending the night, but we'll be there until at least midnight, so cold weather be gone!

Thank you to everyone who sent in their luminary orders. We are up to 19 luminaries so far. Please consider joining us in the fight against cancer by purchasing a luminary.

Here is what we need if you are purchasing a bag:

Your name and address

Who is to be honored on the bag (in memorial or in honor of)

Any photos or artwork you would like included on the bag (you can email or send them)

Anything additionally you would like us to include on your bag

Your check made out to American Cancer Society-bags are $10 each, send to us at 1556 Grand Avenue, Mattituck, NY 11952. You may send the money via paypal at kprokop@optonline.net. Please let me if you send it via paypal so that I can watch for it.

Thank you all for your support for us and the fight against cancer.
♥Kim

Monday, May 2, 2011

2011-04-28T23:22:00.004-04:00

HANNAH at RELAY for LIFE 2010

It's that time again, yes we are all another year older. Relay for Life. This year, our relay is June 4th/June 5th. Our focus again for our Relay for Life will be on offering luminary bags in honor of a special person in your life touched by cancer. These bags have so much significance during the Relay. Here is a description about the luminaries:

Help us shed light on the fight…

Whether it’s a parent, a sibling, a friend or a neighbor, we all know someone who has been touched by cancer. Relay For Life is one way of recognizing loved ones who are surviving cancer and remembering those who have lost the battle. At dusk, we quietly remember those whose lives have been touched by cancer. Luminary bags line the track, each bearing the name of a loved one. This ceremony of light symbolizes the hope and courage with which we all continue to fight cancer. For a donation, you can remember someone who lost his or her battle to cancer, or honor someone winning the fight.

In total silence, all of the luminaries are placed and lit around the track and everyone walks the track by the light of the candles. Last year there was a bagpipe player who led us while playing. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer or just something in general. Last year this was such a special part of the Relay for us. What a sight it was to see all of the beautiful bags that we and other friends decorated last year. There were so many luminary bags with Hannah's name on them. She loved it! And to see all of the bags that the girls decorated for our friends, warriors and survivors was wonderful.

Please consider purchasing a luminary this year. The cost is $10 each. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag

Thank you all for your support for us and the fight against cancer.

♥Kim

Thursday, April 28, 2011

2011-04-28T21:14:00.004-04:00

No No No, how can this be? This post tonight was meant to be about Relay for Life. But as I signed onto my computer, I received another entry about another child struggling to live as the cancer is taking over. Last week it was Hannah who died too soon, she was only 6 years old. This week was Tanner, a 3 year old here on Long Island. And now Nick, fighting for his life, but his parents have been told there is nothing more that they can do. Nick will not get better.

It's so heartbreaking. When you're done with treatment, each week you move a bit more away from the grim reality that is childhood cancer. It's still there, but it's not at the top of the deck anymore. For those families involved in childhood cancer, that card will always be in the deck. There are all the side effects of treatment to deal with, daily, a constant reminder. You are in the fight now and it's not something you can or want to walk away from. It changes your life. But when you're not there to see the faces every day of the other children going through treatment, the faces of the parents too, the cries in the hallway, the "room" you never want to go into because that's where parents get "the talk," the very harsh side of kids with cancer is muted for you. Not gone, but not at the forefront of your every thought. You try to lead a life of less doctors appointments and more every day issues. You push those hospital stays, stressful days and gut wrenching treatments down inside. I used to feel safe and relieved when we walked into the hospital for treatment because we were doing something to fight the cancer inside of her little body. It was our safe place. But now I feel sick. It makes me feel physically nauseous, shaky, nervous. I want to turn and run right out of there. I don't want Hannah to be the kid who had cancer and we can kind of pretend when we're at home. But when we're back at that hospital, that's who she is. Survivor or not, that's who she is.

You begin to find people who are like you, their child has cancer. You bond with them, some at the hospital and some only online. It's a bond that is forged hard and fast. It's a bond that lasts, no matter what. Then a child dies that you have come to "know." Some you know better than others. All are people you have come to love. That card comes back to the top of the deck again. The fear, the anger, and anxiety. And this fear and sadness is from afar, from someone whose child has survived. Can you imagine what those parents are feeling? None of us can really. All we can do is be there for them. Listen to them, talk to them about their child that has died and just be there. No one wants their child to be forgotten.

So tonight, this post is about sadness. Sadness that these children that I had come to know are dying. Sadness that cancer is still winning.

♥Kim

Saturday, April 16, 2011

2011-04-16T21:39:00.003-04:00

Hello everyone,

I am posting some very important information below from my friend Anne's blog. She has been working with another good friend, Nancy, the founder of Kids v. Cancer on a very important project in the world of pediatric cancer. Both of these friends I met in the cancer world when their sons were fighting cancer. Both had the same kind of cancer as Hannah. Both of their sons are dead.

Please give 15 minutes of your time to help.

Please pass along this information in any way you can on your own blogs, by email, through facebook.

Please do it now.

Thank you, Kim

WE NEED YOUR VOICE FOR KIDS FIGHTING CANCER

Do you have 15 minutes, a computer or phone, and a caring heart? Children across the globe need your help. It is a time of unprecedented opportunity. Thanks to technology, we are learning volumes about the genetic and the biological features of cancer cells, but these advances are not translating into better treatments for children. Every day, we bring children to the brink of death, with outdated toxic treatments, in a desperate attempt to save their lives. It has been 27 years since the FDA has approved a new drug specifically for the treatment of a childhood cancer. Most kids treated today are treated with drugs that were developed for adults in the 1950’s, 60’s and 70’s. Due to a lack of funding, we are decades behind in pediatric cancer treatment. You can change cancer treatments for the next generation of children without leaving your home, or spending a penny. We need you to contact two very influential members of Congress, and ask them to be champions for kids fighting cancer. We need to tell them that curing childhood cancer is a national priority.

We are asking Congressman John Dingell (Michigan) and Congressman Henry Waxman (California) to join as sponsors of the Creating Hope Act. The Creating Hope Act encourages the research and development of new treatments for pediatric cancer and other rare childhood diseases. It does not require any taxpayer money (an important fact in these tough economic times). It has bi-partisan support in the House of Representatives and Senate, and the support of pediatric oncologists and researchers from across the country. We are targeting Congressmen Waxman and Dingell because we need a strong Democratic sponsor in the House who is on the Energy and Commerce Committee. We already have Democratic and Republican sponsors in the Senate, and Republican sponsors in the House. The support of Waxman or Dingell is key to getting our legislation passed. The kids fighting cancer do not have a political voice, and are counting on us to stand up for them.

THE PROBLEM

Few people know that cancer is the number one disease killer of our children. Today, over 40,000 kids are fighting cancer. Over 300,000 children are pediatric cancer survivors. However, almost no money is spent to find a cure for childhood cancer. Although survival rates for some childhood cancers have risen over the last 20 years, it is because we are giving growing children higher and higher doses of toxic drugs. Little is known about how these drugs may affect children decades from now. We do know they cause lasting and serious “late effects” for many survivors immediately following treatment. We must provide targeted treatments for the most vulnerable kids in our community, so they can have the quality of life that is deserved after courageously battling cancer.

Today, our outdated treatments fail 20-25% of children. These children are far more than statistics. They lose on average 70 years of life, and leave behind devastated parents, siblings and young friends. These kids are willing to fight, but are given wholly inadequate tools. We must do better. The fundamental problem is that pediatric cancer is rare, and pharmaceutical companies have no economic incentive to spend millions of dollars to research, develop, and test a drug that will be sold to a small number of patients. Simply put, they cannot afford to develop a drug that will not turn a profit. Pharmaceutical companies spend millions of dollars developing drugs for common adult cancers. They make little to no investment in treating pediatric cancers. Our federal government does little to help bridge the treatment gap: approximately 4% of the National Cancer Institutes’ budget is used to research treatments for the twelve different types of pediatric cancer.

A SOLUTION

The Creating Hope Act creates market incentives and will get the best minds focused on developing better treatments for childhood cancer and other rare childhood diseases. Here is a brief summary of how it works: If a drug company develops, and gets FDA approval of a drug targeted for a Rare Pediatric Disease, including pediatric cancer, they will get a "prize." They will be awarded a voucher for FDA fast-track approval of a second, unrelated drug. They can then use this voucher to speed up FDA review of a blockbuster drug (e.g. hair loss, acid re-flux, impotence- whatever will sell). They will be allowed to sell or transfer the voucher to a different company an unlimited number of times - making the voucher very valuable (the voucher is estimated to be worth tens to hundreds of millions of dollars) . Finally drug companies will have an incentive to help kids with cancer.

Congressman Waxman is opposed to the Act, on philosophical grounds, because he believes it will give a benefit to pharmaceutical companies, even though he cannot come up with a better alternative. We need him to support the Act, and focus on all the good it will do for deserving kids. Our kids have been waiting decades for better care. We can work together and find innovative ways to advance cancer care for kids.

WE NEED YOUR HELP

Working together, we will change the landscape of pediatric cancer research for the kids fighting today and the kids who will take up the fight tomorrow. You have a very important role in our campaign. We need to flood Congressmen Waxman and Dingell’s offices with calls and e-mails as soon as possible.

We need you to do the following:

A. Congressmen Waxman

1) Call Congressman Waxmans’s Legislative Assistant, Matt Connolly at (202) 225-3976, and tell him you want Congressmen Waxman to be an original lead sponsor of the Creating Hope Act; or

2) E-mail Congressman Waxman’s Legislative Assistant, Matt Connolly at: waxman.staff@mail.house.gov and tell him you want him to be an original lead sponsor of the Creating Hope Act; and

3) Encourage other people to join our campaign, using Facebook, Twitter, Caring Bridge, and Care Pages.

B. Congressmen Dingell

1) Call Congressman Dingell’s Senior Legislative Assistant, Kimberlee Trzeciak, at (202) 225-4071, and tell her you want Congressmen Dingell to be an original lead sponsor of the Creating Hope Act; or

2) E -mail Congressman Dingell’s Senior Legislative Assistant, Kimberlee Trzeciak, at: kimberlee.trzeciak@mail.house.gov and tell her you want him to be an original lead sponsor of the Creating Hope Act; and

3) Encourage other people to join our campaign, using Facebook, Twitter, Caring Bridge, and Care Pages.

Our goal is to flood their offices with e-mails and phone calls right away. Their staff keeps track of the “hot issues” and will let them know this is a pressing issue for many Americans. Regular mail works too, but delivery is delayed for screening (remember Anthrax years ago?) Below are some suggestions for e-mail/ letters and phone calls. If you would like additional facts about childhood cancer, you can get them from Kids v. Cancer’s website: http://www.kidsvcancer.org/facts/

SUGGESTIONS FOR E- MAIL

You can decide if you want your e-mail to be more personal, more factual, or a combination of both. You can make it brief, or tell why you care about fighting pediatric cancer. You decide. Here are some tips:

Paragraph 1: Establish your standing and get their attention. If you live in the congressman’s district, tell them. If you do not, tell them you have standing because the congressman is on the Energy and Commerce Committee, and this issue is a national priority. Since he is on the Committee, he is in a unique position to help kids fighting cancer. Kids around the country are counting on him. Tell them you are speaking for the kids who are fighting cancer in their district now, tell them you are speaking for the bereaved families who are too tired to call, and tell them you are speaking for the kids in their district who will be diagnosed tomorrow or next year.

Paragraph 2: If you want, communicate your personal story- how has pediatric cancer touched your life? If you want, attach a picture of a child you know who has suffered. Did the cancer treatments work? Were they difficult? Is the child suffering lasting side effects from his treatments?

Paragraph 3: Include a specific “Ask”-“Please co-sponsor the Creating Hope Act of 2011. Then give them your e-mail and phone contact information and ask for a reply.

Additional tips: communications from kids usually get special attention. Have the kids you know send letters or pictures. You can give them a fresh insight into the world of childhood cancer.

SUGGESTIONS FOR A PHONE CALL

The fastest approach is a phone call. Call Congressman Dingell’s office and ask for Kimberlee Trzeciak at (202) 225-4071; and call Congressmen Waxman’s office at (202) 225-3976 and ask for Matt Connolly.

1. Give your name, if you are a constituent of theirs, give your address. If you are not a constituent, tell them you have standing to call them because this is an issue of national importance, and the congressman is on the Energy and Commerce Committee. Tell them you are calling for the kids in their district who are too busy fighting cancer now to call, tell them you are calling for the kids who will be diagnosed in their district next week and next year;

2. Get their attention- personalize why you are interested in childhood cancer “My nephew ___ fought cancer for ___ years. These kids deserve better treatment options. We need more pediatric cancer research.” Provide details and facts if you want. It will help.

3. Ask them to become an original co-sponsor of the Creating Hope Act of 2011. If you want, briefly tell your personal story/experience with childhood cancer- let them know why we need better treatments- did your child/neighbor/nephew suffer through our current cancer treatments?

4. Give them your e-mail and phone contact information and ask for a reply.

Together, we can get Congressmen Dingell and Congressmen Waxman on board! In the future, when you hear about advances in treating childhood cancer, you will know you were part of the solution at a very critical time.

Please contact us with any questions and let us know of your success at: anne@kidsvcancer.org.

We are most grateful for your help.

Nancy Goodman and Anne White

Tuesday, March 29, 2011

2011-03-29T16:24:00.000-04:00

I can't believe it's been so long since I updated Hannah's site. Things are going well for Hannah. I am trying to get her next neuropsychology exam scheduled in Boston. Of course, I should have started this process a while ago, but right now, we have her tentatively set for May 9th. The doctor is working with the insurance company to get a one time exception, since this neuropsychologist is out of network for us. I feel it's important to stay with the same doctor that we had initially, and for Hannah's follow up exam.

Hannah was a bit upset in reading my last entry where I really spoke frankly about the struggles she is going through. She doesn't usually read the blog, so when we happened to look at it one day, she wasn't so happy about everything I wrote. So, from now on I'll be careful and more mindful of her feelings.

Last week she came out of school with a very large black trash bag. It was cans for her Cans for Cancer program. they recycle cans at school and she went to her teacher and asked him if she could have them for Cans for Cancer! What a great idea!

I have been procrastinating writing also, not really wanting to write about a big loss we had recently. We lost a very special friend very suddenly. Hannah's friend "the Hat Man from Boston" died last month unexpectedly. He became such a special person to Hannah and to us when Hannah was going through radiation. We first noticed him one day in the waiting room with a Boston Red Sox hat on. The next day, it was another hat, and the day after that yet another. It became a game to Hannah to see him every day. On the days when Hannah wasn't feeling great, he always cheered her up. At that time she couldn't walk and was in a wheelchair. The radiation began to lower her counts and make her feel nauseous. It was worse and worse as the radiation continued. But we always looked forward to meeting the Hat Man. Hannah began to wear Yankee hats each day, especially as her hair began to fall out from the radiation. Close to the end of her radiation treatment, we decided that we would bring a Yankee hat for our Boston Hat Man and try to get him to wear it...a diehard Boston fan. You bet-he showed up the next day in that Yankee hat. He said it was the only time he would ever wear it, only for Hannah.

We remained in contact with Dennis and his wife Judy after we returned to New York. We were so very shocked when we heard that he had died. I told Hannah, and she said "but he just sent me a Valentines Card." He was a such a special person to all that knew him and especially to Hannah and our family. He will be missed dearly and will always hold a very special place in our hearts.

More to come soon, we are now planning for the 2011 Relay for Life, time flies!!

♥Kim

Sunday, January 30, 2011

2011-01-30T18:13:00.002-05:00

Four Years. Seems like a long time, sometimes it seems like the blink of an eye. Four years ago today we found out Hannah had a brain tumor. I remember that phone call like it was yesterday, especially because recently Colby wrote an essay for class about Hannah. She was asking me questions about how they found the tumor, how long before she was in the hospital (the next day), and what happened after that. She was interviewing Hannah and me, it was like a quick jog down memory lane.

We don't dwell on the cancer anymore in our family. We don't dwell on any of that anymore, we just live our lives every day like all of you. Only, our lives have changed so much since that day 4 years ago. What we dwell on now are the daily struggles Hannah has. She beat cancer, to be left with the scars from that battle. Those scars aren't overwhelming, but they are challenging. Hannah deals with daily nausea and headaches. She takes pills morning and evening. The doctors have tried to adjust her medicine, and eating, and we're still working on it.

She deals with osteoporosis and low bone density which inhibit what activities she can do without pain. She has residual left sided weakness so her left foot is a bit slow and her left hand is shaky. She has balance and coordination deficits because her tumor was in the cerebellum, which controls motor function.

She has growth issues, although she is hanging on to the bottom of the growth chart. To Hannah, this is a big issue. She points out regularly that she is shorter than everyone else. Since her back isn't growing normally, she retains fat around her middle that other kids normally grow out of (or in to.) She asked me yesterday how she can "get skinny." She won't wear a two piece bathing suit or a shirt she thinks shows off her body too much. She cries. We can control this somewhat with diet and activity, but we can't stretch her back, we can't make her shoot up by a foot or catch up with her classmates and friends. Interesting to note that while this is a big issue for Hannah emotionally, she is 11 1/2 years old and wears a size 10, perfectly normal for her age, even on the small size. But what matters here is her perspective, and she is bothered by this. When we talked about this being her 4 year anniversary of the brain tumor, her answer was "another year shorter, another year fatter."

She has learning deficits and memory issues. Often times she will call us into her room at night after bedtime to tell us something, only to forget what it is she wanted. Now, this is common for Dave and I with our early onset Alzheimer symptoms, but uncommon for an 11 year old. School is hard for her. She is keeping up with her class, with modifications, but has to work very hard to stay there. Homework is difficult and often ends in tears. She says she's not going to 7th grade. She says-in all seriousness-she wants to be home-schooled. She told me just today that she would rather have an MRI than go to school.
And Hannah's emotions-well they are difficult for her and difficult for the family. There is a lot of evidence about children with medulloblastoma and how the surgery and treatment can change your personality. She has emotional outbursts, irrational fits, aggressive moments. It affects all of us, as Colby and I were discussing last week. It's difficult to live with it and always keep it in perspective.

But while there are the difficult struggles, there are also the rewards. Hannah cares deeply for others. If she feels someone is treated unjustly, she has to make it right. She is concerned with right and wrong and fairness for all. Her wit is still sharp. She is extremely committed to her Cans for Cancer program and loves organizing for fundraisers and buying toys and crafts for the kids in the hospital, all selected with extreme care. She loves her Hofstra softball team and always talks about baking something for them. For months last year in school, Hannah wrote in her planner every day "bake big cookie for Hofstra softball team."

Four years with such incredible support all around us. The support from our family, our friends and our new friends has been what has kept us going. We have met some of the most inspiring, incredible people, although this is not the way I would ever have dreamed of meeting any of you. Thank you all.

The surgery, the radiation, the chemotherapy, it all took it's toll. So while we don't dwell on the cancer, we live every day with it's effects. We adapt, Hannah adapts. She goes to school, she takes piano, she swims and she plays lacrosse. We all live our lives with our every day challenges, just like everyone else does. We survive, Hannah survived, she is a survivor. We are happy.

♥Kim

Wednesday, January 19, 2011

2011-01-19T21:12:00.001-05:00

Hannah's MRI results are in and all is stable! Whatever is now there in her head has not changed, which is good news. It's very strange for me to announce "stable." I have read blog after blog where parents announce "stable" with enthusiasm and relief. But in my mind, I have to say that I was never envious of "stable." Stable to me means that there is something there that is not supposed to be there. That something could be tumor or scar tissue or in our case, more of a mystery. But, it's something that shouldn't be there. Something that we have to monitor, to worry about, to wonder about. I really prefer NED-no evidence of disease, now that is great-nothing there that shouldn't be there. Just like the rest of us.

Clinic went well yesterday. Clinically Hannah is doing the same-daily headaches, morning stomach issues, fatigue. Her oncologist said he would like to get her somewhere between where she is now and perfect. He doesn't expect that she would feel perfect, but daily headaches at a 7/8 level are not ideal. He wanted to consult with the neurologist-who came in after but didn't offer any suggestions. She asked Hannah to maybe try and eat little bits of food more often??? She isn't my favorite doctor.

So for now, we will wait until the tumor board reviews the scans next week at their weekly meeting. Afterwards, we will find out when our next scan is scheduled for, possibly 3 months? 6 months out? Maybe they will have another idea also on something else to try to alleviate the headaches and morning nausea issues. I'm thinking maybe a month in Hawaii will do the trick! Ok, how about a week? I think right now I'll have to settle for a postcard on the fridge.

♥Kim

Wednesday, January 19, 2011

2011-01-19T21:12:00.000-05:00

Monday, January 17, 2011

2011-01-17T20:03:00.003-05:00

Hannah goes for her MRI tomorrow, 3 months since the last one. We aren't scheduled until 5pm, so we won't get results until Wednesday, ugh.

Hannah's symptoms have pretty much remained the same-almost daily headaches and doesn't eat anything in the mornings. It's not so terrible, just the way she feels.

We will update as soon as we know. Please send up a little prayer!

♥Kim

Wednesday, January 5, 2011

2011-01-05T22:11:00.004-05:00

Merry Christmas and Happy New Year, a bit belated to all of you. Of course I planned a big happy Merry Christmas update but that didn't happen. Then I planned an end of the year wrap up but that didn't happen. What did happen was a big family celebration at our house this year. My parents, my sister and her daughter arrived to celebrate Christmas and the New Year with us. We thought it was fun, hopefully they did too! We stayed up too late, ate a little more than usual (ok, a lot more than usual), drug them around NYC-I can hear all of them laughing or maybe grimacing right now, but had a lot of laughs. It snowed here right after Christmas so I didn't have to hear the kids cry anymore about not having any snow at our house but ALWAYS at grandma's house!! Oh boy.

Our wish is for a Happy and Healthy New Year for all of you. 2010 was a difficult year for many, we lost so many children to this awful disease. The most recent was a girl close to home. I learned of Katy because she was a gymnast at Riverside, the gym where the girls went and where I teach. She was diagnosed in April of 2009 with Hepatoblastoma (liver cancer). She lived in Sag Harbor, just miles from us. She came home on hospice just 2 weeks ago and died just 5 days after Christmas. Beautiful young girl, same age as Hannah. Just hurts.

There will more soon, much more. Until then, bless you all.

♥Kim

Sunday, December 19, 2010

2010-12-19T23:03:00.003-05:00

I changed the picture on the blog tonight to Hannah preparing the stockings for Jackie's Pay It Forward stocking drive. Of course she had fun buying everything and stuffing the stockings.

Things are in overdrive now. My sister and niece arrive Tuesday, my parents on Thursday. We are hoping they bring some of that Midwest snow with them.

Hannah and I have been busy baking cookies, she would bake every day if she could. I have been in contact with her oncologist regarding her symptoms following her short dose of steroids. She has continued to regress. She still has daily headaches, she isn't eating again in the mornings and has been complaining that her stomach hurts especially in the mornings. Ugh, poor thing. I feel so badly for her, it must really stink to feel bad EVERY day. She has been making it to school though, so she isn't falling behind. The other night as I was putting her to bed she was crying and told me her life was the "worst ever." I thought-here it comes-this whole cancer thing has finally gotten to her and this is it. But, what she said to me was "I hate going to school." She said she wants to be home schooled, and doesn't care if she misses out on seeing her friends at school, and some of the fun things. I think school is much harder for her than any of us can even imagine. We get a little taste of it helping her with homework. She works very hard to keep up, and maybe that's part of her headaches???? Enough hypothesizing for now!

It's almost Christmas and I feel blessed to be able to share it with all of my family here with us this year. This includes all of our extended family...all of you! May you all have a very Merry Christmas and a Happy and healthy New Year. Please keep all of our cancer family in your thoughts and prayers, there are so many spending this holiday in the hospital or in heaven.

♥Kim

Monday, December 6, 2010

2010-12-06T22:52:00.005-05:00

Where has the time gone? We did get the last second opinions in regarding the MRI. Three out of four doctors agreed these spots were "treatment changes." When I asked specifically what that meant, the answer was "we don't know, but we see these often in kids treated with both radiation and chemotherapy." We don't know. I appreciated the honesty coming from one of the top radiation oncologists in the country and the head of the Harvard Medical School. Hannah's oncologist said he wouldn't be surprised if these spots grew on her next MRI (deep breath at this one) and that he wouldn't be too concerned with that. What we would be concerned with would be changes to the spots themselves in density, consistency, enhancement, nodularity, etc. I asked for repeat scans in 2 months, doctor said 3, so we are scanning at 2 and a half months, late January.

Hannah went off steroids after one week. Her eating is tapering down now, wow, those steroids cause crazy eating frenzies! Clinically, Hannah didn't present show any improvements while on the steroids. However afterwards, beginning soon after she stopped taking them, her headaches and stomach aches seemed to get better. She started eating breakfast again. Note that she wasn't in school during that time. Hmm. The doctor said one possibility could be that the steroids decreased any inflammation in the brain, decreasing her symptoms. We are keeping an eye on her over the next 2-3 weeks to see if her symptoms reappear. She has had daily headaches after returning to school after Thanksgiving break, but not bad enough to go to the nurse or come home from school.

She has asked a few questions about all this. I'm sure she hears me on the phone talking to the doctors, when they call I have to talk to them right then and there. She was working on a project for school, an "I am poem." One of the statements was "I am afraid of" and Hannah filled in..."that my cancer will come back." (another deep breath at this one) She is just so matter of fact about the whole thing sometimes. She doesn't talk about it or cry about it or even mention it. But, when she writes something like this, I know she thinks about it.

We're preparing for Christmas like all of you. This year, Hannah decided she would like to support her friend and fellow cancer survivor Jackie in her Holiday Stocking Drive. Please visit her site HERE to see what an amazing job this little girl does with all of her marrow drives and pay-it-forward events. She is a certainly wise beyond her years...awesome! It's not too late to get involved with us in Jackie's stocking drive. If you would like to donate any stockings, please email me or call and let me know and I will come and pick them up and deliver them for you. Jackie needs all stockings by December 15th.

We have to go for a blood draw early tomorrow morning for Hannah's endocrinologist, not such a pleasant way to start your day. Hannah already told me "I'm not going" so we'll see.

♥Kim

Friday, November 19, 2010

2010-11-19T22:58:00.002-05:00

I have been waiting to write until all of our second opinions are in, but we are still waiting on a couple.

I met with Hannah's neurosurgeon on Tuesday. He is such a smart man, great doctor and Dave and I really trust his opinion. He said he doesn't believe we are dealing with a recurrence. {{{breathe now}}} He said he typically sees medullo recurrences in 2 forms-either as a solid tumor recurrence within or adjacent to the original tumor bed, or spread throughout the brain. Although Hannah's oncologist said he wasn't concerned because the spots are not in the tumor bed, the neurosurgeon said that is not a criteria for recurrence, it can occur anywhere within the brain, or even in the spine. However, any recurrence that he has seen enhances on an MRI (and Hannah's spots are non-enhancing.) I did question him on this though, because I am aware of other cases in which children have recurred with medullo and their cancer does not enhance. He said he is aware of this, but has never seen it personally, it's pretty rare.

The neurosurgeon did recommend two things-a lumbar puncture and a PET scan. He wanted an lp to check her spinal fluid pressure as well as cytology (check for cancer cells within the cerebral spinal fluid.) I questioned this because Hannah never had cancer cells in her csf (which, by the way would be pretty bad.) He said that doesn't really matter, recurrences act differently and could be present now in the csf, even if they were not there originally. However, if the csf came back clean, that doesn't necessarily mean she doesn't have tumor present, but at least we would know it's not in her csf. This would give us a much better starting point to work from, if it ended up to be recurrence.

A PET scan is a scan where they inject you with a radioactive glucose (sugar) and then a scan is performed. Basically, areas of tumor (cancer) soak up the glucose and are highlighted on the scan. PET scans work differently from MRI's in that they detect metabolic changes in the body, rather than anatomic changes. So, sometimes they can detect cancer or recurrence of cancer before you would see any physical changes on and MRI. PET scans are generally very good at detecting scar tissue vs. tumor activity. Scar tissue has very little metabolic activity while tumor tissue is high in metabolic activity. There are a few drawbacks to PET scans though. They don't do a good job in differentiating cancer from inflammation, inflammation will show up as a hot spot on a PET, just like tumor. This can be misleading.

That is where the steroids come in. Hannah has been on steroids now for one week. We did this to see if it would decrease her symptoms-which they have not. If her symptoms were caused by inflammation in the brain (from radiation necrosis), the steroids most likely would have helped her. But, they did not. Her oncologist originally had said to keep her on them for 2 weeks, but it's been a week with no changes, and we are now weaning her from them. She did fairly well while on them. She had a couple bouts of emotional crying for no apparent reasons and she has been extremely tired. Just within the last couple of days, she has been more hungry than usual. That side effect has lead to her trying some new foods, out of desperation, which has been fun. Tonight she tried sushi for the first time, along with fried rice and miso soup. She said it was "ok" and would not have eaten it had she not been STARVING! She also tried pasta that I had made with a low fat alfredo sauce (ew, white sauce) and although she was grumbling about it, ended eating it. She is not good about trying new foods and hasn't been since she had chemo. Her gag reflex is very strong, and sometimes even the smell of a food will make her throw up, so it's not something I usually push too hard for her to do. Puking when trying to eat is never fun, for the puker or the watchers!

We are still waiting on second opinions from New York City as well as Hannah's radiation oncologists in Boston. We are really interested in their opinions, since if this is radiation necrosis, they should be most familiar with seeing it. Their tumor board met on Wednesday, and I followed up with them Thursday and today, but no word yet. We are taking this as a good sign. If they thought it was tumor, they would be moving a bit quicker-at least that's what we are hoping!

Before we decide on our next move, with an lp, or a PET scan or just waiting to rescan in 2-3 months, we wait. We wait to get those other opinions. Hopefully not much longer.

♥Kim

Thursday, November 11, 2010

2010-11-11T23:22:00.003-05:00

I wish I could report that Hannah's MRI report came back as NED, all is clear. Unfortunately I can't. I knew when I heard Dr. Atlas on the phone today instead of his PA, the news wouldn't be good. He said there are 3 spots that showed up on her MRI. He knows me, so the first thing he said to me was "I don't think we're dealing with medullo." These spots are right outside the tumor bed, and very faint. They aren't enhancing on the MRI like tumor, which is a positive. He said they are like smudges on a pair of glasses, very faint.

So what are they? His best guess is that it is some type of radiation changes. Possibly necrosis? Oh yeh, necrosis is scar tissue. For right now, he is prescribing a course of steroids for 2 weeks to see if it helps her symptoms of vomiting, headaches, fatigue and nausea. Her doctor said that if she was asymptomatic, he would not be treating her just due to the MRI. He would just watch and wait. If she responds to the steroids, we scan again in 2 months because then the area needs to be closely watched. If she doesn't respond to the steroids, we scan again in 3 months.

Now we're in a holding pattern. I will report to him in 1 week to see if there is any improvement. In the meantime, I am heading to the hospital tomorrow to pick up a copy of the MRI so that I can send it to our neurosurgeon, and our radiation oncologist from Boston. I'm hoping the radiation oncologist can provide some insight. Possibly they have seen this before.

I'm drained, off to bed for the night. Thanks for hanging in with us.

♥Kim

Thursday, November 4, 2010

2010-11-04T22:45:00.004-04:00

I just got in from a wake for Stanley Cherry Jr. Little Stanley was only 12 years old when his life was ended by his cancer, his body too weak to fight any longer. What a sad sight to see such a small young little boy in such a small casket. We met Stanley and his mom at Schneider's when Hannah and Stanley were both going through treatment. Stanley had Wilm's tumor-the most curable form of childhood cancer, even a higher cure rate than leukemia. Stanley's tumor was just so persistent, always coming back, even after a bone marrow transplant. Stanley died on Saturday morning after battling cancer for more than half of his little life. Stanley always had such a bright smile on his face, that is how we will remember him.

Thanks to everyone that sent smoothie recipes after my last post. The smoothies didn't go over so well. Hannah drank most of her smoothie on the first day, almost none of it on the second day, we switched to a chocolate shake on the third and fourth days and by the fifth day she was done with them. She just couldn't get them down. She doesn't feel well enough in the mornings usually to get anything in, not even plain apple juice. Tuesday of last week on the way to school at 7:45am when Hannah gave me the "I don't feel good" comment in her quiet voice. That means PULL OVER NOW, which I promptly did. Hannah spent the next few minutes throwing up on the side of the road trying not to get her new boots dirty. There was nothing for me to do but stand by and hand her a tissue when she was done. Se then felt better and made it to chorus on time at 7:55am. Poor thing, it must be like perpetual morning sickness.

I emailed her oncologist and he decided to move up her MRI to next week (to put that to rest.) Let's hope it does put it to rest because between then and now I'm getting hardly any rest. Honestly, I don't believe this is tumor. What I'm hoping it isn't is a problem with her ventriculostomy. Hannah had this procedure to help with the flow of cerebral fluid where they put a hole in the bottom of one of her ventricles in the brain to help the fluid drain out after her brain surgery. The doctor told us at that time that it could work forever or could at some point be blocked and have to be done again, or she may have to have a mechanical shunt put in. That would mean another brain surgery.

Her doctor did say he believes this is most likely pfs-posterior fossa syndrome. This syndrome involves a variety of signs and symptoms including mutism or speech disturbances, dysphagia, decreased motor movement, cranial nerve palsies and, emotional lability. We knew that Hannah had pfs following her surgery when her speech was limited, she stopped using her left side, she developed an issue with her eyes and she was emotionally unstable. Many children with posterior fossa (it's the back on the back of your skull) tumors develop pfs, some much more severe than others. Pfs is widely known and acknowledged, but it's origin is unknown. It's a complicated and often misunderstood syndrome.

Ok, I haven't done a medically detailed entry like this in quite a while! Thanks for sticking with us. Please join us in saying a few extra prayers next week as we look for another clear MRI! If you're reading this and you're family, I'm sure you can expect that "MRI deal" phone call from Hannah very soon!

♥Kim

Sunday, October 24, 2010

2010-10-24T23:12:00.002-04:00

My camera is broken. Thought you might want to know why I haven't updated our photo here, it still shows Hannah in the pool! That's all gone now, pool is closed and it's cold. Hannah has been getting a bit more stamina at school. She has made the last 2 weeks without coming home sick. It's still a struggle for her, but she is making it! But, she is complaining still of daily headaches and stomach aches. Nearly each day, she goes to the nurse, or takes time out for a break in her special education teacher's room for a snack or rest. The school tracks this for us on a calendar and when I looked at it, with each day filled with something, I thought it's time to do something else to help her.

We made a visit to clinic on Friday to see Hannah's oncologist. My fear was that he would say, well if she's having headaches, we should move up her MRI. Whew, that's not what he said. He looked at her school calendar and then asked about her diet! He ened up increasing her night time medication to double what it is now. He then said he wants her to have more fluid and sugar in the morning. He thinks she is dehydrated, which is leading to headaches. The difficulty is that because she doesn't feel very well in the mornings, it's hard to get anything into her. She usually eats a few bites of apple or 2 strawberries or a few grapes. This is the right kind of sugar, it's just not enough. So, we are going to try fruit smoothies. Hannah has never liked these in the past, but we're going to try again beginning tomorrow. She will take one with her to school tomorrow, and that along with the increased medicine at night will hopefully make a difference.

I hope this helps and she likes the smoothie because smoothies are a wonderful way to get in a lot of extra nutrients and vitamins. She hasn't liked any type of mixed shake drink since I made her and Colby drink the herb drink when she was on chemo. I made a green herbal shake with all sorts of really bad tasting things in it. I had pictures of the two of them sitting and crying while trying to get this down. It was BAD and it was BIG! I don't blame them for not drinking it. I then moved to a form of Carnation Instant Breakfast souped up but that didn't fly either...just the thought of anything else in it and they both wouldn't drink it AGAIN! Have you ever tried those? They are good! After that I pretty much gave up on any power drink for Hannah. We're trying again tomorrow, so wish us luck!!

Friday was not only a doctor's appointment, but we also delivered all of the Halloween goodies for the oncology ward! Hannah's Cans for Cancer sponsored Halloween for the hospital last year, and also this year! It is so much fun for Hannah. She scours Oriental Trading for weeks before ordering goodies for our bags. This year we made 360 bags total We also took in 135 pumpkins for the kids to decorate. The pumpkins were donated by Krupski's, Helen's and VerDerBer's this year. Thank you to all of them!! I am really missing my camera, I don't have any pictures of the girls washing the pumpkins, of our family on the floor putting together all of the bags, of the car packed full for our trip in! It was a lot of fun. Hannah decorated a pumpkin in clinic to leave there on display. I do have a photo on my phone, and I'll try to get that from my phone to my computer.

So, a bit of a change for us. I am relieved that they didn't immediately say they wanted to move up Hannah's MRI. We will hold off until December for that, which is just fine for us. Let's keep our fingers crossed!

♥Kim

Sunday, September 19, 2010

2010-09-19T01:17:00.003-04:00

School school and more school. Can you believe it's taken me almost 3 weeks to post after the first day of school? Yikes, I'm getting slower and slower. School is still a work in progress for Hannah. I would like to say that the first day of school was great, happy and wonderful. But...the first day of school was pretty hard for my girl. I couldn't get her out of the car. When I finally did, then we couldn't budge from the lobby. Even the principal couldn't get her to go up to class. We finally got out of the lobby and into the stairwell. Stuck there. Her beloved art teacher happened by, and wisked her off. Later Hannah said to me "well she didn't have to hold me so hard." I told her that maybe it worked, she finally got up to her classroom!

After that first day she was determined not to go back. Somehow Dave managed to work a "deal" with her and if she was the first one in the class the next day she would get $5. Of course, I am the one that has to enforce this "deal." I was surprised that it worked out, and Hannah was very concerned about being to school early the next day to be the first one in the classroom! Since then, she hasn't had a problem (phew!).

The first full week of school, we didn't quite make it through. I got my first call from the school nurse on Thursday afternoon. Hannah had a stomach ache that she thought was bad enough to come home. She came home and slept for 3 hours. The next day, Friday, she still had that stomach ache and missed the whole day. I found out that there were a few kids (in her class) that were out with stomach issues, so I think this is what happened. She just didn't bounce back quickly from stomach issues like she usually does if it's just her normal issue.

On to the 2nd week, Hannah made it all the way until Friday, with each day a bit harder than the next, more stomach aches, daily headaches. Hannah had a stomach ache last Friday that she said was a 7 on a scale of 1-10. We worked it out that she would go, so she didn't miss morning chorus and if she was still feeling badly she could call and I would come and get her. Got the call about noon and she came home to sleep the rest of the afternoon.

Week 3 (this week) and Hannah was explaining to me that she has headaches pretty much every day, usually beginning after snack time and before lunch. I have an email in now to her oncologist to see what his thoughts are. I'm thinking it's probably fatigue and the stress of the day. School is hard for her this year. We began modifying her workload after day 1 this year. That didn't happen last year until the end of the school year. She tells me every day that she doesn't want to go to school the next day. I wish it wasn't so hard for her.

Hannah does have a great support team in place this year. She likes them and I love them! After our first night of homework, Hannah spent 1.5 hours working. Her special education teacher checked in with me, and I explained our difficulties and she immediately notified all Hannah's teachers who got back to me right away and told me to "not let her work that much at home." They really have her best interests at heart, and I'm glad to have them.

I have lots more to tell you all about, some great things happening with Hannah's Cans for Cancer, and other fun and not so fun stuff so I'll be back soon!

♥Kim

Wednesday, September 8, 2010

2010-09-08T22:02:00.004-04:00

Yesterday 46 brave mommas shaved their heads to raise awareness and funds for childhood cancer. Why 46? Because each day, 46 children are diagnosed with cancer. Just 3 years ago, Hannah was one of those children.

Watch for some familiar faces of some of our friends you may have come to know this Hannah's website-Peggy (Coleman's mom), Heide (Jessica's mom) and Mimi (King Julian's mom), all angels now. Please take a moment to view the video, I'm sure you'll be moved as I was.

Watch for these bald mommas on the 2nd Annual Stand up to Cancer show, Friday Sept. 10th at 8pm eastern time.

September is National Childhood Awareness Month.

Sunday, September 6, 2010

2010-09-06T21:31:00.002-04:00

Another month gone, and school is starting! We spent our August with a trip to my parent's house in Indiana which is always fun for the girls. They kept busy with trips to Carlson's (the local drive in hot dog stand with the best root beer around), blueberry picking, water park, fishing and crazy water swinging and lots of visiting time with Grandma and Grandpa and cousin Sydney. We were then home for 4 days and left for a family vacation to Canada!

Dave had been planning this bucket list trip for the family to Alberta Canada in the Canadian Rocky Mountains. We spent time in Jasper National Park and Banff National Park. Both are just amazing places. We saw bears for the first 3 days we were in Jasper, 2 of them right on the side of the road! We saw a mother grizzly with her 2 cubs on one of our hikes, very close to us. We had just passed the park ranger with her rifle who was looking for the bears. It was the most beautiful scenery we have ever seen. Dave had an ambitious schedule planned for us and had done a lot of research on the hikes he wanted to take. We saw waterfalls, canyons, glaciers, elk, grizzly bears, black bears, mountain goats, coyotes, and big horn sheep. One thing we hadn't planned for so well was Hannah's feet. It had been a while since she had such rigorous exercise and pounding on her feet. By day 3, she was loudly voicing her displeasure with hiking. By day 4 she was clinging to a bridge on the hike, refusing to go any further. She was limping and crying. Dave began carrying her for much of the difficult terrain on the hikes, usually up the side of the mountains! Hannah didn't really like that, she said it was uncomfortable. I know she have rather walked, but she just physically couldn't do it. I told her that her dad was in such good shape, he needed a bit more of a challenge to raise his heart rate by carrying her-and I was joking about that!

Dave had planned well, with all of our hikes listed as "moderate". I told him he needed to write the author of those many books he read and tell them our definition of moderate was a bit different. Absolutely loved the trip, I describe it as an endless stair master through Christmas (many of the hikes were through pine forests and they smelled wonderful.)

Tomorrow is the start of school! I don't know where the summer went, it always just flies by. Hannah is entering 6th grade this year, and Colby will be in 8th. I was able to get Hannah's information early before we left for Canada so that we could begin preparing her emotionally for the changes for this year. She has a great group of teachers this year. She will be in the inclusion class since she now has an IEP to help her with any special accommodations she needs. Hannah doesn't have an individual aide assigned to her, but she does have a special education teacher and there is a full time aide in her classroom. We don't have our beloved aide Natalie with her this year, and her favorite teacher Mrs. Finger isn't there either. Every time we bring this up Hannah gets upset and cries, so I'm not sure what to expect for tomorrow. I know she will come to know and trust these teachers and new aide, but transition is difficult for her. We went up to her classroom a few weeks ago so she could see where it was and we spoke with her math teacher who was there. On the way out, we went by Mrs. Finger's classroom and Hannah was going from desk to desk crying and trying to find her desk from last year with the smiley face inside. She says she wants to go by and say hello to Mrs. Finger and Natalie tomorrow on her way in, and hopefully she won't get stuck in there! I wish I could be a fly on the wall tomorrow.

Will report in soon! Thanks for still keeping up with us!

♥Kim

Sunday, August 1, 2010

2010-08-01T22:43:00.002-04:00

As Todd would say, if it's been a month without an update, it must mean that all is well! All is great! Hannah has been enjoying the summer with lots of activities. She has math tutoring 2 times a week at 8:30am which hasn't been easy, but I find that if I talk to her about it the night ahead of time, it helps a bit. Last week I didn't give her enough notice, it was difficult to get her up in the morning and she accidentally kicked me right in the nose. I saw stars, and there is a good chance she broke my nose. I contemplated going to the ER, but there really wasn't anything they would do. It still hurts, it's been about a week. She felt badly and apologized later, but she still went to school. This week is her last week of summer tutoring, and I hope it's been enough to keep her up to date with things.

We have all been pretty busy this summer. I keep saying that summer is supposed to be for relaxing, but why don't we feel relaxed? It's a fine line you walk between being too busy and being bored. When the girls aren't doing enough, they are on their computers and watching tv. When they are doing too much, they are tired! Hannah did a farm fun days camp that they said was "very boring mom." She also did a tennis camp which she really liked. Hannah also swims on a swim team on Tuesday and Wednesday nights. In true Hannah fashion, she said she was not going to swim on this team. She swam on the team last summer, then continued to swim during the year at an indoor place. She really improved from last year, so this year she was on the next level up team with her friends.

I think she was a bit nervous about swimming this summer. Last year Hannah wasn't as strong and needed a lot of help and encouragement while swimming. She couldn't do a full lap without stopping last year. If it wasn't for Marissa, a teenage girl that is a coach for the team, Hannah would never have stayed and swam. Thanks goodness Marissa is there again this year, and thank goodness that Hannah doesn't really need her that much this year! Marissa was so surprised to see how much stronger Hannah is this year. She doesn't need breaks that often, and in general can keep up with the kids in her lane. Last week I heard her ask Marissa if she would stay by her lane because she was tired. Still, she did fine.

We are count down again for Grandma and Grandpa's house, only 5 days left. Sydney is here with us for a visit and the girls are having a great time with her. We leave on Thursday for Indiana.

So in between swimming, lacrosse, school, basketball, tennis, more school and more lacrosse, we have been trying to get in some fun in the sun. Hannah continues to do well. The hospital called last week to schedule her next MRI-for DECEMBER!! Wow, that's great and a little weird. About 2 weeks I eliminated one of Hannah's medicines. She still takes two anti-nausea meds. Almost immediately she began to have stomach issues. I don't tell Hannah when I decrease her medicine. She started having stomach aches again in the mornings, that lasted quite a while. She stopped eating breakfast, became more selective about what she would eat, and just seemed to regress. Sometimes this happens when I decrease her medicines, and it passes but this just wouldn't pass. The issue when adding back in a medicine, is that you usually can't just add it back in at the same dosage. Her doctor explained that you generally have to increase it from the last dose, then slowly decrease it back to what it was. So, I added the medicine back in 2 days ago at double what it was. She is much better already. All this changing and she never knew. Well neither did her doctor! Really no need to contact him unless I couldn't get it under control myself.

Hope you are all enjoying your summer. We don't go back to school until after Labor Day in New York, so we still have over a month left! Pictures to follow soon, I'm off to bed!
♥Kim

Wednesday, June 30, 2010

2010-06-30T23:03:00.003-04:00

Clear Scans once again, Alleluia! Hannah had a head MRI on Tuesday afternoon, and we are all clear once again. As I stood with Hannah in the MRI, holding her foot like I always do, I was playing out the scenarios in my head...what if? What if it was all clear? I expected it to be all clear since Hannah has been doing so well and has had no issues. But, what if there was something? So many kids lately have had "something." Even after long periods of "nothing" and "all clear", so many children have shown up with "something" just out of the blue. At this point, it's difficult to put us in the that position. At one point in the past I had everything all set on what I would do, I would jump into action and beat down the new brain tumor. But, it's almost as if I have faded away from that and can't believe that it will ever happen. It's like a safety net I have built around Hannah so that it can't happen. It's not so bad living in this dream, I like it. We don't have to go back until December 14th, wow!

I see it every day. I see kids die every day from cancer. It's really been horrible lately, or maybe I'm just more in tune with it now. It just seems like a lot of kids are recurring and a lot of kids are dying. So many heartaches and terrible stories. Kids do not die peacefully from cancer.

So, are you still with me? Hannah delivered a bunch of goodies to the clinic during our visit on Tuesday. Colby came with us, and was so enamored by a little girl that Hannah delivered a hat to. This little girl was bald (although Hannah informed us that she DID have little wisps of hair) and picked out the cutest pick hat. It was too big for her bald little head, but looked so darn cute on her, her dad though so too-we saw him taking a picture. Hannah really got a kick out of passing out some of the hats we brought. Here she is getting everything ready. This wouldn't be possible without all of your generous donations to Hannah's Cans for Cancer. I plan to do another update soon on all of the wonderful donations we have had recently, thank you so much!

This week Hannah is in tennis camp, so it's off to bed! Enjoy the summer, we are!

♥Kim

Wednesday, June 9, 2010

2010-06-09T21:40:00.014-04:00

RELAY for LIFE

Our Relay this year was another success! Every year it seems there is so much work to be done to get ready, but every year it is so worth it. Hannah had a good time again this year, what a true SURVIVOR she is! She wanted us to walk the Survivor lap again this year with her to start the Relay so we did. The second lap of the Relay is caregiver lap. Love this picture of Colby walking with Hannah. Colby has done so much for Hannah over these last 3 years, and it hasn't always been easy for her. She was the one left behind while we focused on Hannah. She was the one who went to games and school and concerts and plays without her mom and dad (although Grandma and Grandpa were great stand-ins). She was the one who had to play second fiddle because her sister was so sick. We tried hard not to make her feel left out but it was inevitable. And look at her-still taking care of her sister. Just love this picture.

Our team this year raised close to $2000-with $755 coming from our quarters lap where everyone comes out and lines the track with quarters. Here is little Thomas-the only survivor at Relay younger than Hannah. He has hepatoblastoma (liver cancer) and is doing really well. He worked on these quarters for almost an hour! Our team Wheel of Fortune raised $238-check it out! The kids had great fun with this one, and Pam did an awesome job making the wheel. The rest of our money raised came from the luminaries and other donations made. Thanks to everyone for your support once again this year. This year Hannah collected 64 luminaries!

To date, our Relay has raised $155,000 with more money still on it's way. That's awesome! I had better end now, it's taken me 2 weeks to get this posted. Hannah is starting in on another round of tests and doctors appointments, which has kept us pretty busy the last week. She has her next MRI on June 29th.

♥Kim

Monday, May 31, 2010

2010-05-31T22:28:00.007-04:00

Happy Memorial Day to everyone and thank you to our veterans past and present. Today we honor them all.

Just a quick note with some new pictures of Hannah. She is growing up so quickly and thank goodness she got the chance! Hannah's 11th birthday is this Saturday, June 6th. We will celebrate at Relay for Life on the 5th, then again on the 6th for Hannah's life celebration! I can hardly believe it.

Hannah at crazy hair day-yes, that's her name written on the back of her head!

Gardening

Spring concert-she's on her tiptoes trying to be as tall as her friends!

♥Kim

Tuesday, May 18, 2010

2010-05-18T22:50:00.003-04:00

Just a quick post tonight. We are getting down to the last few weeks before our Relay for Life. If you are thinking of joining the us in the fight against cancer this year by purchasing a luminary, please let us know. We are now at a total of 45 luminaries! Last year our total for luminaries was 117, so I'm not sure we'll make that mark again, but we hope to get a little closer. Every dollar counts in this fight. Here is our information again, please join us if you can!

RELAY for LIFE

The luminaries are $10 each. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at kprokop@optonline.net if that is easier.

♥Kim

2010-05-03T21:41:00.006-04:00

I signed on tonight to read some of the kids' blogs I follow and went to Kevin's site. Kevin was a brave warrior that was diagnosed with medulloblastoma at age 3. Ten years later, at age 13, Kevin was diagnosed with GBM-another brain tumor. 10 years later! Kevin died in January of this year. This entry just struck me-

Mom and Dad will be at the cemetery from 1-4pm tomorrow with some honey baked ham, sandwich fixings, and drinks if anyone wants to come and join them to honor Kevin's birthday.

No parent should have to celebrate their child's birthday gravesite at the cemetery. How humbling.

If you'd like to join us in the fight to save more kids in their battle against cancer, you can purchase a luminary for RELAY for LIFE! As of tonight, we have 16 bags sold. Here is the information:

The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at kprokop@optonline.net if that is easier.

♥Kim

Wednesday, April 28, 2010

2010-04-28T22:40:00.008-04:00

Hannah was invited to spend last Saturday with her Hofstra softball team. They were holding a Friends of Jaclyn day (the organization that matched Hannah up with the team for adoption) to honor Hannah and two other kids that are adopted by the Hofstra baseball team and the Hofstra girls softball team. Because of scheduling, Hannah was the only FOJ kid at the game.

The team is just so welcoming to Hannah each time we are there. Hannah was very excited to go, but as soon as we get there, she is very shy, almost not speaking at all! She always gets so shy when we are around the team, unlike her everyday normal. It made me remember something Hannah's neurosurgeon said to us after her surgery. A couple days following her initial brain surgery, Hannah was withdrawn and began to lose the use of her left side completely. Her doctor came in to talk to us about her progress and her issues. I will never forget that he said "the kids that are more aggressive and outspoken do better with recovery. Hannah seems to be more of a shy, withdrawn and sweet little girl. She doesn't have that aggression and fight in her." My initial thought was-WHAT???? He doesn't know the real Hannah. The Hannah we knew was spirited, funny and always the life of the party, the center of the group. Not a fighter? He had no idea how much of a fighter she was. And when she couldn't fight anymore, we stepped in to hold her up, to push her when she needed to be pushed and to just hold her when she needed some down time. She fought through and she made it. She still fights every day, and often reminds me how wrong that doctor was and still is.

So, I digress!! Hannah went out and warmed up with the team and spent some time hanging out with them as they prepared for their game. The time came to throw out the first pitch and Hannah was so nervous. She has done it before, but for some reason she didn't want to go out there this time. I knew she would do it when the time came.
Coach Anderson walked her out, and the team was there to back her up. Another strike, she did great! It was a beautiful day and we sat back and enjoyed the rest of the game, which they WON! The team is having an awesome season and they are very good! It is absolutely a wonderful group of girls and coaches.

After the first game, Hannah went down and gave the team the big top cupcake she made and decorated for them. They aren't allowed to have sweets during the games so they saved it for later to eat. She also got to write up the roster for the second game with Coach Williams. She thought that was pretty cool.

Hannah decided that for the next game, instead of baking something for the team, she is making them a video (so, Hofstra if you are reading this, act surprised!) So, we took lots of pictures that day, and she has already started putting together the video. I will share it when it's completed. Thank you to the entire Hofstra team and to Friends of Jaclyn. You have really made a difference to Hannah and our family.

♥Kim

Saturday, April 24, 2010

2010-04-24T22:27:00.004-04:00

Hannah spent the day today at Hofstra as their guest of honor. Much more to come on the fun today, but for now, posting Colby's web address to her photography site...please stop by and check it out!

Colby's Site

♥Kim

Monday, April 19, 2010

2010-04-18T22:49:00.014-04:00

RELAY for LIFE

It's that time again, yes we are all another year older. It's Relay for Life time. This year, our relay is June 5th/June 6th (Hannah's birthday.) Our focus again for our Relay for Life will be on offering luminary bags in honor of a special person in your life touched by cancer. These bags have so much significance during the Relay. Here is a description about the luminaries:

Help us shed light on the fight…

Whether it’s a parent, a sibling, a friend or a neighbor, we all know someone who has been touched by cancer. Relay For Life is one way of recognizing loved ones who are surviving cancer and remembering those who have lost the battle. At dusk, we quietly remember those whose lives have been touched by cancer. Luminary bags line the track, each bearing the name of a loved one. This ceremony of light symbolizes the hope and courage with which we all continue to fight cancer. For a donation, you can remember someone who lost his or her battle to cancer, or honor someone winning the fight.

In total silence, all of the luminaries are placed and lit around the track and everyone walks the track by the light of the candles. Last year there was a bagpipe player who led us while playing. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer or just something in general. Last year this was such a special part of the Relay for us. What a sight it was to see all of the beautiful bags that we and other friends decorated last year. There were so many luminary bags with Hannah's name on them. She loved it! And to see all of the bags that the girls decorated for our friends, warriors and survivors was wonderful.

So, we are open for sales! The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

Your name and address
Who is to be honored on the bag (in memorial or in honor of)
Any photos or artwork you would like included on the bag (you can email or send them)
Anything additionally you would like us to include on your bag
Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page, left hand side. You may also paypal me the money at kprokop@optonline.net if that is easier.

I will close with some pictures of our last 2 Relays. Here is Hannah in her first Relay-2008

Relay for Life 2009:

♥Kim

Tuesday, April 7, 2010

2010-04-06T20:58:00.002-04:00

I hope everyone had a very happy and blessed Easter. It was also my mom's birthday, HAPPY BIRTHDAY TO THE BEST MOM ever!

I'm not sure exactly what's going on with Hannah lately. When my parents were here, she was going to bed later than normal time, which may be part of it. Then spring break week of course they were staying up late, which was fine because she also had time to sleep in. About 2 days before the end of the break Hannah got a cold-sore throat and very stuffy nose. Yesterday she did fine in school, but last night as I was putting her to bed she asked if she could start going to bed earlier! It was a bit after 9pm. What kid says that? I think she wants to stay up, but she just can't and she knows it. I thought that 9pm was early enough, but we're backing that up a bit now. The difficulty in going to be early is that by the time she is out of school, done with after school activities (piano, horseback riding, swimming, lacrosse, religion), spends up to 2 hours on homework, and eats dinner, it can be between 7:30 and 8:00pm. Colby and Hannah like to have a snack before bedtime, so if bedtime is any earlier than 9:00, she is eating her snack right after dinner. I guess there needs to be more hours in the day for things like this- this is Hannah relaxing on a beautiful day last weekend.

Today I got a call at 1pm from Hannah at school asking to come home. She was complaining that her stomach hurt, but she stayed for the last 2 hours and seemed to do fine. I put her to bed at 8:30pm tonight and she didn't resist. We will see if, over time, this helps with her fatigue.

It's Relay for Life time again, so we'll be talking about that more in the upcoming days. This year it is on Hannah's birthday, she'll be 11 years old, wow!

♥Kim

Sunday, March 28, 2010

2010-03-28T20:32:00.008-04:00

Colby just informed me that it is time to update the blog, so here I am! The girls are on spring break this week, so we're all happy about that. We don't have any plans to go out of town, lots of little things to do. Hannah has to go back to the dermatologist this week to check to be sure that the last mole was completely removed. We will also check her whole body for any other marks.

Here are some pictures of us at the bird sanctuary in Southampton. It's a really cool place, birds land right on your hand...or head!

We had Hannah's teacher conference this week. She is doing remarkably well, with her two lowest marks in science and math (the only 2 categories in which she is below grade level). Her biggest challenges are processing speed, memory retention, planning and organizational skills, attention deficits, fatigue and nausea. Umm, think that's enough? Her teacher this year in 5th grade is also the same teacher she had for 4th grade and we love her. She has such a good understanding of Hannah's issues, and has been able to see the progress that Hannah has made over the last two years. She makes modifications when Hannah needs them, and knows how to motivate Hannah. Next month Hannah has two state tests-the English/Language Arts and only 2 weeks later the math state test. Frankly I could care less what her scores are, but the tests must be taken.

Her teacher did recommend that Hannah be tested for an IEP-Individualized Education Plan. Public schools are required to develop an IEP for every student with a disability who is found to meet the federal and state requirements for special education. Up to this point Hannah has had what is called a 504 plan-which is different from an IEP in that it usually only makes accommodations for physical issues for a disabled student. Our school has been very good about providing anything that Hannah has needed, even under her 504 plan. Anything we have asked for, they have provided. However, now that Hannah will be in 6th grade next year, she will need an IEP to qualify for some accommodations-especially in math. Six grade math moves very quickly, and we know that Hannah will struggle. With an IEP in place, she will be able to be pulled out only for math, which moves at a much slower pace. She will have to qualify for an IEP-I believe the testing is similar to the neuropsychology testing she has had done.

Enough of that-Hannah did participate in the science fair this weekend. Here she is with her project-Temperature and Crystals. She had note cards prepared to help her explain the project to the judge, and she did well. She wanted to do a food project because she likes to cook.

As far as me, I'm 2 weeks post surgery now and not doing great, unfortunately. It was bladder surgery that was supposed to be relatively easy. I have been back to the doctor about 12 times, spent a day in the ER and had many complications which probably don't need to be spelled out here. Mom and dad stayed on for an extra week after Colby's birthday to help, which was definitely a big help since I couldn't drive and am still on Valium. Back to the doctor again tomorrow, still keeping an open mind.

Happy Spring everyone, let's hope it starts to feel like it soon!
♥Kim

Sunday, March 14, 2010

2010-03-13T21:29:00.003-05:00

It's been almost a month since my last post, wow! First I wanted to say: HAPPY BIRTHDAY COLBY!!! Colby turned 13 years old today, hard to believe it but it's true. She is the best daughter we could ask for, and we couldn't be prouder of her!

Hannah has been doing well. She had a clinic checkup this week. There were several issues I had to discuss with her oncologist. About a month ago I decreased Hannah's medicine. We want to continue to try to decrease it, although she may never be completely free of it for nausea. That has worked well, and she didn't even seem to notice the change.

She continues to experience fatigue. She hasn't been out of school lately, so that's good, but I can see it's building. She has been experiencing more stomach aches in the mornings the last few days and looks exhausted at night. We try to keep her bedtime consistent, in bed by 9pm each night, at least on most nights. She just can't keep going consistently like we can. Whether this changes over time or not, is yet to be seen.

I also spoke to her doctor about her height. We know that last year she grew at just half the rate of normal. She seems to be slowing down even more. This is really an issue for her endocrinologist, and we see him again at the end of June. Hannah is at the 3rd percentile for height, but we think she may be falling below that line now. We discussed growth hormone, it's uses and it's effects. Hannah is now 2 years and 3 months out from the end of chemo, so he feels the use of hgh is safe as long as it is used only to supplement what her body isn't producing. There is research to support that doses used at these levels are safe and do not increase odds of recurrence of tumor. Conversely, our oncologist does not advocate the use of hgh at higher levels than the body produces, in order to stimulate growth. There is no research that supports the use at these higher levels, and we just don't know if it's safe. Believe me, this is a very simplified version of what all is involved. This is an issue for discussion the next time we see the endo.

I also spoke to to the doctor about gene testing for Hannah. I have been reading about specific gene mutations of kids with medulloblastoma. I read an article recently regarding recurrence of kids with "average risk" medullo (ie: Hannah). Here is the article in case you are interested:
link here.

His comments were interesting. He pointed out that even if she did not have this mutation, that could provide us with a false sense of security since medulloblastoma is not linked only to this one gene mutation. If it were as simple as that, a cure would already be found. There are several other factors and/or gene mutations that could be involved in this disease. He wasn't adverse to testing, and would make it happen if we wanted to push forward, but didn't want us to rely on only this one test. Also, with Hannah already more than 2 years out from treatment, she is most likely past the window of the type of recurrence discussed in this particular study.

So, for the mean time, we will just keep our eyes open for these type of things, without living in constant fear of the unknown. At some point you have to focus on the life ahead without recurrence, rather than just waiting for the other shoe to drop.

Signing off for now. I am having surgery tomorrow and have to be at the hospital at 5:30am! It's nothing too major but will be in the hospital overnight and then at home recovering. Mom and dad are here taking over for now, thank goodness for that!

♥Kim

Wednesday, February 17, 2010

2010-02-17T22:32:00.007-05:00

The girls had winter break from school this week, can't believe it's over already. Nothing really exciting happening, we are in town while dreaming of the Bahamas. We took a drive over to the south side this week to Montauk to see the seals. I tried to prepare the girls in case we didn't see any so it wasn't a complete let down. It was a short hike to get to the ocean, probably 20 minutes. Hannah only fell once so it was a good day. We saw seals immediately upon entering the beach. It was so cool. There weren't a lot, only 4, but so much fun to watch. Look at this cutie. It was pretty cold when we got down to the water, we stayed for about 30 minutes.

Hannah also had a sleepover last night (which is why I'm so tired today.) Four girls over, finally asleep about 12:15 in the morning, so not that bad. We made our own pizzas, made cut and tie pillows, played lots of hide-and-seek and hamster games, and watched a movie. It was a busy night, but so much laughing and so much fun.

So that was the fun stuff. Now for the other stuff. Hannah's mole biopsy came back as dysplastic nevus (atypical mole.) It could be something or it could be nothing. Back to research mode. What I know so far is that it could be a gene mutation (called Gorlin's syndrome) which causes both atypical moles that could eventually be cancer AND medulloblastoma, or it could be a secondary reaction as a result of the radiation she received, or it could be something unrelated. We have a clinic appointment in a couple weeks, and I'll discuss it with her oncologist. We also have a follow up appointment with her dermatologist-one more doctor to add to the mix-in six weeks to ensure she got the entire mole out and there is no repigmentation of the area.

If I had to make a guess, I would guess option #2, secondary issues resulting from the spinal radiation. The mole was in the field of radiation on her back. Will keep you informed as we progress through this one!

Enjoy your weekend,

♥Kim

Tuesday, February 9, 2010

2010-02-09T20:52:00.004-05:00

We are at home today, snow day from school, yippee! We have a delay tomorrow too, so not bad. We probably only got 8 inches or so. Hannah wasn't too excited when I told her we were going to the dermatologist this morning to get a mole on her back examined while everyone else was at home playing in the snow. Last time at clinic, her neurologist saw it and suggested we go get it looked at. Of course, the doctor today wanted to take it off and biopsy it. I hadn't prepared her for that. There were some tears because the shot of lidocaine really hurts, but she didn't feel anything after that. Now we wait. I'm not even going to get into the radiation induced mole issue, not going there unless we have to.

Hannah's next clinic visit is scheduled for March 16th. She is still struggling with stomach issues. I haven't talked too much about it here, but she is out of school on average 1 day a week. It's not typically all day, but she will come home from school sometime during the day. For the last couple of weeks it's been on Fridays. It's almost like she is just too tired from the long week, and she struggles to make it through. She comes home and sleeps for up to 5 hours, gets up and feels much better. Then she eats, has more energy and stomach feels much better. So, what is that? Last week she came home on Friday from school, slept for 3 hours, I woke her up at 4 because we had something to do, and by later that night she was good enough to play lacrosse! I'm planning on talking to her oncology group again in March to see their thoughts and ideas. If any of you reading this have any ideas, I'd be open to hearing them!

Speaking of something to do, Hannah and I went to the Coaches versus Cancer game here at our high school last week as representatives for the American Cancer Society (filling in for our friend from the ACS that couldn't be there.) Hannah had a good time getting people to sign petitions, hanging up the donation signs and getting people to play the games at our table. She also went out with me to give the speech in front of the crowd and present the coaches with their certificates of appreciation. We had fun! American Cancer Society runs this event all over the country in conjunction with coaches from the National Association of Basketball Coaches to raise awareness and funds.

We were then off to her lacrosse game (at 9 pm). She loves to play, and we love to watch her. We're not sure how much longer she will be able to play. Once the girls get older, the competition gets stronger, and the girls get faster. She won't be able to keep up and it will get too dangerous for her to be out there with the fast movement, pushing, shoving and flying hard lacrosse balls. She runs hunched over like a little old lady. Her upper body is always going forward a bit quicker than her feet can keep up with, so we're always afraid that she is going to do a face plant at any minute (which she did a couple games ago.) She really enjoys it now, more than last year. She doesn't usually get the ball during a game, but feels like she is more a part of the action this year. At one point during the game, after a penalty the ref handed her the ball, she took a couple steps a fired a quick pass right to a teammate. Dave and I looked at each other like "did you SEE that?" We were both surprised and laughing! The day after the games she always has some type of soreness or pulled muscle. It's because her body isn't conditioned like a normal 10 year old. Sometimes it's a twisted ankle, or a With the chemo, radiation and inactivity over the past 3 years, she is still behind. But, she's getting better, little by little.

♥Kim

Tuesday, February 2, 2010

2010-02-02T22:07:00.000-05:00

I found this article recently and wanted to share it, I found it very interesting. The dates are now outdated. It's both interesting and uplifting. Enjoy.

♥Kim

The Ravens' (very) secret weapon

You're 14 years old. You've got cancer. And your team asks for your help.

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By Rick Reilly
ESPN The Magazine
Archive

Courtesy Jamie CostelloRay Rice's 83-yard scamper? Matthew Costello made the call.

Hey, Baltimore fans, this might make you spit out your crab cakes.

You realize who's been calling the first play of Ravens' games lately? Like the one that went for an 83-yard touchdown against the Patriots?

If you said head coach John Harbaugh, you'd be wrong.

Offensive coordinator Cam Cameron? Wrong again.

QB Joe Flacco? Strike three.

The guy who's been calling the first play lately isn't a guy at all. It's a 14-year-old Baltimore kid. His name is Matthew Costello, he's got an inoperable brain tumor and he's on a lucky streak.

"You gotta meet this kid," says Cameron.

This all started when Matt, a third baseman and pitcher for Loyola Blakefield Middle School, was hit in the eye with a pitch that tipped off his bat. He ended up with double vision. A few dozen doctors later, they found a malignant tumor. Now his days are mostly going to chemo sessions and wondering if he's ever going to get back to playing any of the three sports he loves.

Cameron's son, Danny -- Matthew's classmate -- told his dad about him, how he lives for the Ravens. Next thing you know, Cam Cameron was driving through the biggest snowstorm to hit Baltimore in years -- getting stuck three times -- with a Flacco-signed football, a signed hat and glad tidings for Matthew.

Why? Maybe because Cameron survived serious melanoma cancer at age 28.

Matthew's dad is a morning news anchor at WMAR in Baltimore and he was on the air, live, when his phone spit out this befuddling text from his wife, Donna: Cam Cameron is on his way.

"I'm like, 'What?'" Jamie Costello recalls. "'In a driving snowstorm?'"

Yep. Cameron talked with Matt for 20 minutes, and then, as he was leaving, turned and said, "Hey, Matthew, whaddya wanna call for our first play Sunday?"

Mouth open. Eyes not blinking.

Since the chemo took his brown hair and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

"Seriously," Cameron said.

Since Matt played QB for the school team, he knew when it was time to audible. "Play-action pass," he said. "Be cool if you could get it to Todd Heap."

Sure enough, first snap against the Chicago Bears in Week 15 -- with the Ravens trying to make the playoffs -- Flacco fakes the handoff and drops back to pass. Only he bounces the ball off the turf for an incomplete pass. But later in that series Cameron looks at his play sheet. Scrawled on the side, he's writtenMatthew Costello. So he calls Matt's play again and it goes for a 14-yard touchdown to Heap, the tight end. Ravens win, 31-7.

End of story, right? Except, three weeks later, the night before the Ravens' playoff game with New England, Cameron calls again.

"OK, Matt, whaddya wanna do Sunday?"

"Run the ball," pronounced Matt. "Ray Rice. He's hot."

So, first play against the Patriots, Flacco hands to Rice. There's a hole and Rice is through it like he's being chased by a bear.

"And I'm thinking to myself, 'Don't tell me this is going to go all the way,'" Cameron remembers. It does -- 83 yards, untouched, for a touchdown. "The whole way, I'm thinking of Matthew," Cameron says.

Nobody knows any of this except Cameron's and Matt's families. Jamie Costello is in the press box, screaming like his underwear is on fire. He hadn't told anybody that his teenage son was the new brains behind the Ravens' offense, so every single person gives him the stink eye. There's no cheering in the press box, dude. Unless you're cheering for a kid who's trying to survive.

Ravens win, 33-14.

Says Cameron: "I just looked to the sky and said, 'Maybe there's something to this kid!'"

Oh, there's definitely something to this kid. Since the chemo took his brown hair (the family calls him "Barkley" now) and a whole mess of his white blood cells, he only leaves the house to go to the hospital. Instead, he listens to comedy on his MP3 player. It's a crazy thing to see a kid, fighting for his life, constantly laughing.

This month sometime, Matthew will gulp hard and find out if his tumor has shrunk enough to begin radiation. If not, it's back to the chemo, Frank Caliendo going through his brain, prayers going through everybody else's.

Cameron knows a little how the kid feels. Earlier this fall, he had another cancer scare -- this one prostate -- but a battery of tests turned up nothing.

"My three boys and I talk about Matthew all the time," he says. "Anytime we're going through something a little tough, we say, 'How do you think Matthew's doing?'"

As for Matthew's dad, he can't find the words. "I used to worship Brooks Robinson," Jamie says. "But Cam Cameron is higher than that now for me."

The Ravens play Super Bowl-favorite Indianapolis on Saturday, on the road. Cam is planning the Matthew call for Friday night.

So, Matthew, whaddya wanna do?

"I haven't decided yet," he says. Smart. The Colts could be reading.

Not that he doesn't have a game plan.

"When I get better, I wanna do what Coach Cam did for me. I wanna make some kid feel the way Coach made me feel."

Funny, right? How a kid with double vision can see so clearly?

Saturday, January 30, 2010

2010-01-30T22:16:00.000-05:00

January 30, 2007. Three years ago today Hannah was diagnosed with a brain tumor. Some things I can remember like they happened yesterday. This is one of them. Even though Hannah had been throwing up and having stomach aches for about a year (not every day), I went to this MRI with the carefree attitude of a non-cancer parent, never thinking for a moment that anything would come of up. As I sat next to the MRI tech, watching the computer screen the whole time with him, I knew nothing. I remember asking him if he could distinguish anything on the screen because I had no idea what I was looking at. He told me that he had been doing MRI's for 30 years and if there was anything to be seen, he would see it. It must have been a surreal experience for him, seeing that big tumor in her head with me sitting right over his shoulder questioning him. I do remember him bringing out a copy of the dvd to me afterwards handing it to me and telling me "good luck." He knew, he had to have known.

That was a Tuesday. By Tuesday afternoon we were told they "found something" on the MRI, it was a "mass" and we were in the neurosurgeons office being told it could be one of three types of tumor; an astrocytoma which was a non-malignant tumor and required surgery only, medulloblastoma (we all know what that is by now) or a glioblastoma multiform (which is the type of tumor Ted Kennedy had.) The neurosurgeon guessed it was the "middle" option-medulloblastoma-and he was correct.

By Wednesday morning we were checked into the ER at Stony Brook hospital for brain surgery scheduled for Friday. Dave and I were laying in bed that morning at 4am, unable to sleep and decided to finally get up and get going. Dave went to work to get some things in order and I went to the hospital with Hannah. They started an IV (which was much too big for her small veins) and that was the start of Hannah's pain. They were giving her steroids to help drain some of the water pressing on her brain from the tumor. We went right to the ICU awaiting Friday's surgery. Nothing prepares you for seeing your little girl in the recovery room after a 6 hour brain surgery. I wish someone would have prepared us for that. She looked like she was near death, her eyes were swollen, she had blood on her face and head, iv's in her arms, a drain coming of of the back of her brain, but still most of her hair! That surprised me, I thought she would have her whole head shaved, but they only shaved the back, from the middle of her head down.

Hannah went from this:

to this:

My mom took this photo while Hannah was recovering from the brain surgery. Dave and I went that day to Sloan in NYC for a consult with the doctors about her treatment. By the time we got back all Hannah would say over and over was "I want mommy, I want mommy," even though I was right next to her. This is the only photo I have of Hannah during those early days after surgery. It just never occurred to me to even take a photo. You can't see in the photo, but off to the side is a New York Islander who was visiting kids in the ICU. What I see in the photo is a little girl who won't turn her head because her neck hurt from the surgery. We used to prop her head between blankets on both sides to help hold her head up. She also wouldn't move her hand, because of the iv. See her left hand in the photo-it's starting to curl from not using it. Over the next few days, she would lose full use of her left hand and leg.

So many memories, and although so many of them are heart wrenching, some of them are good too. I have been asked if I can breath now, if I feel it's all over. Well, it would be nice. It would just be great to walk away from this world of cancer and not look back. No more MRI's, no more nausea, no more stomach aches or headaches, no more struggles with walking, running, jumping, putting your pants on without falling down, being able to ride your bike without falling off at least once. No more crying over homework because it's too hard and it takes too long, no more feeling inadequate, We don't usually even reveal the fears to ourselves, because then we would have to confront those fears. For now, they are hidden and suppressed. For now we talk about how everything is "great" and Hannah is "doing well" and "all is good." And it is good. In the world of cancer, as a friend once said "we were dealt the lucky card."

Let's hope our hand holds.

♥Kim

Monday, January 18, 2010

2010-01-19T21:46:00.002-05:00

Good news, all scans are clear! I called and got the good report from the oncology fellow on call. This is a significant scan, since statistics say that year 2 after end of treatment has the highest rate of recurrence for medullo patients. After 2 years, rate of recurrence goes down. Hannah does have to be scanned for at least 10 years, because there is still a chance of recurrence, not only for medulloblastoma, but also for other tumors and leukemia.

But for now we relish in our good news, AGAIN! This is the first time in nearly 3 years that we haven't had an upcoming clinic visit or scan scheduled. Feels a bit strange. most likely we will go back in March to check in again. After this, Hannah's scans will go to every 6 months (instead of every 4.)

Thank you for all of your prayers and good wishes. Love to you all!

♥Kim

Sunday, January 17, 2010

2010-01-17T18:57:00.002-05:00

Hannah and I went in today for her brain and spine MRI. Thanks for all your well wishes! We have never been in on a weekend for an MRI, and now I know we won't go back. Although it was nice and quiet, it wasn't as smooth as we are normally used to.

First we pulled up like we normally do in front of the hospital and valet took our car. Because Hannah is an oncology patient, we don't have to pay for valet (which is nice, because then we can always leave a tip for our driver :)). When we went in, they told us we could not use valet for no cost because it was a weekend, so they couldn't stamp our pass. Ok, no problem we'll pay today.

Next, we went down to MRI. They came out and sent us to a different floor to check in, because there is no secretary in MRI on the weekends. No big deal, only a delay of about 15 minutes. Back down to MRI. It's nice and quiet since it's the weekend, so that was good. We were familiar with the tech, Brian, a nice (and very big) guy who we have seen numerous times. So about an hour into the MRI, they come in to start her IV and get ready for the contrast dye. Brian looks at her arms and decides he doesn't want to try and start the IV. He calls over the other MRI tech and after several minutes of looking, checking, probing and discussing, he decides to try it. Joe was very nice, but couldn't get a vein. Try #1.

Next they call in the radiology resident to see if he could do it. I'm wondering why they would call a radiology resident, whose job it is to read MRI's, but I'm just going with it for the moment. He arrives, and is not the poster child for confidence. He is outside for quite a few minutes, talking with Brian, and I could tell he really didn't want to try the IV. He looked at Hannah, saw that she was a young girl, and looked hesitant. He finally came in and announced "I'll give it a shot." Oh boy. It took him a lllllloooooooooonnnnnnnnnnggggggg time to even prep Hannah for the IV. I should have known when he didn't tie the rubber band properly that he wasn't a good choice. He put in the needle and poked it around her arm for about a full minute before he gave up. Try #2.

What to do next? Well it's a Sunday, so anesthesia isn't around, so that's not an option. I suggested they call one of the nurses from hemonc down, but they said they wouldn't come down. They suggested calling the radiology senior resident, and even though I didn't resist, I wasn't going to approve of that one. Brian ended up calling a nurse down from the pediatric ICU. Hannah and I were taking bets on whether it was going to be a man or woman (since they were all men so far.) We both bet on woman, but they sent both...a man and a woman. They brought down some type of handheld vein finder. The man started the IV in about 10 seconds...Try #3. Hannah has NEVER had to be stuck three times for any IV. Hence, my reservation on the weekend MRI.

I asked Brian if the MRI would be read today, but the radiology attending had already left for the day (at 10:30am) so I put it out of my mind that we would have any results today. I am going to try to contact the fellow on-call tomorrow in oncology and see if they can get a reading. The hospital is closed tomorrow in honor of Martin Luther King, Jr. Day. Otherwise, we won't know until Tuesday. That is the longest we have ever had to wait for MRI results, even the initial MRI, which, by the way was January 30. 2007. I can't believe it's been almost 3 years from initial diagnosis.

Hannah and I went to the traditional celebratory Olive Garden lunch afterwards, which hopefully will be our celebration lunch. I will let you all know as soon as we do!

♥Kim

Sunday, January 10, 2010

2010-01-10T22:58:00.004-05:00

Happy New Year everyone! I don't know about all of you, but I haven't been able to write the date yet correctly. Old habits, I guess. Just a brief update tonight. We had a fun New Year's eve here together. The girls stayed up for the big moment, we blew horns and threw lots of junk around the living room-which not only made the dogs a bit crazy, but woke up dad too :)

The new year started off a bit slowly, I was sick for about 5 days, most of that time spent on the couch. My theory is just a regular flu, compounded by this persistent lyme infection. My body just can't keep the lyme at bay while trying to fight off something that I could normally fend off rather easily. It's pretty frustrating, to say the least. I did find some old medicine here, and took that which made a pretty quick difference, but now that is gone, I am already starting to feel the aches return. I'm now on a new mission to find something that rids my body of this. Back to research.

Enough about me though. Hannah was out of school for a couple days last week. She has been complaining about stomach pains and headaches. In true Hannah fashion, this also happened the last time right before her upcoming MRI. She is scheduled to have her full brain and spine MRI this coming Sunday, the 17th one week from today. This one is not so much fun, it is very long (4 MRI's in 1), which lasts about 2 1/2 to 3 hours. We have to get special permission from the supervisor at radiology because they don't usually do these together since it takes so long and most patients can't do it all at one time. But, this isn't the first time, Hannah has done them together for the last 2 years. This is her 2 year MRI, pretty significant in the medulloblastoma world, because the highest rate of recurrence is within the second year after the end of chemo. After this one, they go to every 6 months, yeah!

Hannah has really been doing well. Despite this last week of issues keeping her home from school, and in bed for sometimes the entire day, I am feeling calm about her upcoming scans. I never knew that we could have an MRI on a weekend. After 2 years someone finally told me that scans could be done on Saturdays and Sundays! The only downside is a doctor won't be available to read the scan that day, so we will have to wait until the next day (or possibly Tuesday since Monday is Martin Luther King day.) Talk to me then to see if I am still calm by Tuesday.

Hope everyone has a good week, we'll update again when we have the news about scans-only GOOD news!

p.s. Please remember that if you would rather receive an email when this site is updated, rather than coming here to check in, please enter your email address on the home page, right underneath our address. It works!

p.s.s. Look at the new home page photo-it's Hannah on her 7th birthday, about 6 months before diagnosis. Wow.

♥Kim

Saturday, December 26, 2009

2009-12-26T21:41:00.004-05:00

I wanted to share with all of you a very special Christmas gift that Hannah and Colby received from their Hofstra Softball Family. They both received these beautiful blankets made by the team. On one side they screened on some photos of the girls with the team, at some of the games we have been to. On the other side (shown below) each girl had their hand print and their number. We know a lot of work went into these, and we ALL LOVED THEM!! These are the most special of gifts-those made with time and love.

Thank you Hofstra so much!

♥Kim

Friday, December 25, 2009

2009-12-25T21:43:00.004-05:00

Merry Christmas to you all. May you be enriched with all of God's love and blessings this holiday season.

If you didn't receive a Christmas card from us this year, I'm sorry. However, you weren't alone...I didn't send any out. I just didn't have the time, and it kept moving down and down on the priority list. I delivered gifts to our last adopted family on Tuesday, and then we left for Indiana on Wednesday. Maybe next year...or maybe this spring, you never know!

Love to you all...

♥Kim

And a photo for Aunt Shari....they are getting lots of love!

December 12, 2009

2009-12-16T22:15:00.000-05:00

I know it's time to update the blog when people begin to email asking if everything is ok! Thanks for checking in on us. Here is what we have been up to lately:
concert, concert, black eye, sick at home from school, volleyball, swimming, horseback riding, brain tumor clinic, shopping shopping for families, eye surgery, computer virus, gingerbread houses, lacrosse, decorating, dog walking, mountain climbing,

Ok, you're all caught up now! It has been so crazy busy here since my last post, I know it's been a while. To quickly catch you up, we didn't end up traveling to PA because Aunt Rosemary got sick right before Thanksgiving. We were planning on starting on Dave's new adventure-hiking the high point in each state. We had planned on hiking PA, WV and MD in one day! Actually two of the three were drive ups-drive up the mountain, get out and put your foot on the high point, then drive back down. the other was only a short hike to the hight point. That trip is on hold for now until our next visit to Rosemary's house. Instead we decided to hike the high point in Connecticut. We ended up going on Thanksgiving day because it was supposed to rain the rest of the weekend.

The hike was listed as moderately difficult, with areas of difficult climbing. Oh yes, there were areas. When we first saw what the steep part of the climb, neither Dave nor I thought we could make it up with the kids. There were about three areas where Hannah just sat down and refused to move. After much crying and resistance, she agreed to go up with Dave. That meant that Dave carried her for part of the way-the steepest and most difficult part of the way. I don't know how he made it up that mountain carrying her up. The views were great once we made it up. What we didn't know was that we had to make it over one mountain to get to Mount Frissell (the CT highpoint, 2380 feet). So we climbed two mountains that day. Lessons we learned include: don't bring a 20 pound camera bag, don't bring a heavy backpack with lots of stuff you don't need for a brief day hike, wear better shoes so that you don't fall down so much coming downhill, DO bring a map so that so much time isn't wasted trying to find the trail head, DO a bit more research before you head out for the hike. This was our first of 50, so lessons learned. We figure that there are probably 3 high points we won't be able to do, one of them being Mt. Hood where those 3 hikers were recently lost while hiking up the mountain.

So that was our Thanksgiving day. On the drive home, we stopped at a diner for Thanksgiving dinner, which was a hamburger, salad, spaghetti! Not traditional that's for sure, but it was fun.

On to Christmas...an update on our Family Adoption Program for the year. Thanks to all of you, we were able to adopt 6 families this year, double the amount from last year! These are families that are struggling to provide for their families due, in part, to having a child diagnosed with cancer. Not only devastating emotionally, cancer takes a toll on a family's finances. Often times (like in our case) one parent has to stop work to be with the child that is sick. Hannah had her initial MRI on a Tuesday, by Wednesday morning, she and I were checked into the PICU at the hospital. We didn't come back home for 4 months! I quit my job to be with her full time.

Thank You to everyone who adopted a family and sent donations. Your kindness and generosity are so much appreciated. You have made such a difference in these family's lives for the holidays this year. Little kids don't understand that Santa can't bring presents and now these children don't have to. They will wake up Christmas morning to presents under the tree like other children their age. They will look with wonder at the tree and try to figure out how Santa got all those presents there! Their parents will feel a sense of relief and happiness! Thank you all so much!

I am signing off for now, we will be back before Christmas!!

♥Kim

Sunday, November 22, 2009

2009-11-22T21:15:00.005-05:00

It's that busy time of year again! I mean to update every week that goes by, but I usually end up falling asleep at the computer. My lyme disease is back again since I came down with a sinus infection a couple months ago. Seems that my body can't fight off an infection and keep lyme at bay at the same time. Go figure! This too will pass is what I keep telling myself.

Things have been fun with our three monsters...oh I mean dogs...ruling the roost. Actually little Dani is so sweet and they all get along quite well. She is learning quickly and has picked up on so many of Tod and Riley's bad habits. They are good trainers. You should see me out walking the three of them, I have had some people stop and stare at me. Probably wondering if I'm going to trip and fall while getting my arm pulled out of socket and dragged down the road!

Hannah continues to do well. I had her teacher conference and got her report card last week. Her teacher is so impressed with how well she is doing this year. She is working more independently, is more focused and participates more this year compared to last. She still takes more time to complete assignments during class and homework, but is still keeping up with the class. We all couldn't be more pleased. Looking back, even to last year, it becomes clearer as to how badly she must have felt last year. She missed so much school. This year she has only missed one and a half days total. She was home sick one day last week. She woke up so congested, with a stomach ache and just feeling lousy. She had a bad cold, slept until lunchtime, and felt a bit better by the end of the day. By the next day she was back in school. So many kids here in our elementary and our jr/sr high schools have had the swine flu. By some miracle, neither Colby nor Hannah got it. They both got the shot, so by now they should be protected from it. Let's hope so!

Hannah has been busy with weekly swimming lessons and swim team and horseback riding. Colby just made the volleyball team at school, so now she has travel lacrosse (started this weekend), volleyball, basketball and horseback riding. Think she does enough sports? She wants to do it, so as long as it accommodates her homework and she isn't too tired, we let her. Oh, and that doesn't count her dog agility classes, religion and practice for those sports too!

Today we attended the fundraiser for the Guardian Brain Foundation, organized by our friends the Mardjanis. You all may remember Alec, Hannah's friend from Schneider's with medullo also. It was such a nice event and they raised a good amount for the foundation. I had the opportunity to meet the founder's of the Foundation, Mike and Mary Pallotta. Mary and MIke started the foundation in order to support others fighting brain tumors and their families after Mary's brother passed away from a brain tumor. An organization that started out as a very small grass roots organization has grown to do wonderful things!

Hannah had fun helping me with the raffle table and of course bowling. She asks me constantly to go bowling, she loves to bowl too! Dave, Colby and Hannah bowled with the group and I helped Amy with the event. Hannah won a basket from the raffles-what else, stuffed animals! Great job Amy!

And our biggest project that has been keeping us quite busy-our adoption plan! We have organized 5 family adoptions this year in all. In addition, others have sent money going towards those adoptions, which is a big help. Hannah's Cans for Cancer is adopting 2 families this year, each with 3 children. The gifts will be delivered to the families on December 15th, so we have been shopping in earnest. Anyone who knows me, knows I'm such a planner and like to get things done early. We are almost done getting everything just right for the families, now we will start wrapping. I know Dave is looking forward to that! THANK YOU to everyone who has participated this year in our family adoptions. You are doing a wonderful thing!

We are traveling to Pennsylvania this week to spend Thanksgiving with Dave's Aunt Rosemary. We are also undertaking a new, exciting and BIG endeavor, but we'll save that for next time. So many reasons to give thanks, we hope you all spend the holiday safely with loved ones. Happy Thanksgiving!

♥Kim

Monday, November 9, 2009

2009-11-09T22:28:00.004-05:00

Happy Birthday to the best sister ever. Today is my sister Sue's birthday (29th I'm sure!) Love you!

Did I mention I tried to decrease Hannah's medicine again? I don't tell her when I attempt this because I don't want her to think about it, or to have a reaction that may not be absolutely true. One more try, one more fail, but I'll keep trying. Only 2 days after I decreased one of her anti-nausea meds, she started complaining of a stomach ache again and looked terrible in the morning. It was that same old look she used to have when she wouldn't eat anything in the morning. I immediately increased the med back up to it's original level, after a few choice words to myself, and just crossed my fingers that it would work right away. Last time we did this, we went back to the original dose and that didn't work. Her oncologist advised me then that sometimes just going back to the original dose doesn't work, and you have to double the medicine to get her back to a baseline. Trying to go one step forward and you end up going two steps back! That doesn't seem to be the case this time, when I increased them back, she quickly recovered. She seems to be fine again at this dose, I would just love for her not to have to be on these medicines for the rest of her life. I guess it's not the worst thing, but at some point I'm sure her insurance company won't want to cover these any longer.

I wanted to mention two other exciting things tonight.

The 2010 Team Unite Calendars are now available on Cafepress!!

Show your support for our kids, and join us in the fight to CONQUER CHILDHOOD CANCER!!!

Each page features Team Unite members. Also included within each month is a detailed description of one of the childhood cancers, including symptoms and statistics. The month of September features Childhood Cancer Awareness Month.

All proceeds will go to The Henry Tucker Foundation, CureSearch, and The Jessica Catherine Randall Memorial Scholarship Fund.

Please note that on our smaller calendar ("Team Unite Wall Calendar"), the informational text is a bit difficult to read from a distance. Please consider the larger size ("Team Unite Oversized Wall Calendar") if you feel this may be an issue.

We have been a member of Team Unite for a couple years now, since it was created by our friends Heide and Michelle (both moms of children who are now deceased.) They are really doing an incredible job of raising awareness and supporting families of children with cancer.

Hannah is pictured in the 2010 calendar in the month of January.

_______________________________________________________________________________________

Also, we would like to announce an upcoming event hosted by our friend Amy Madjanani (Alec's mom, www.4theluvofalec.blogspot.com)

Kids Bowling For a Cause

Includes Unlimited Bowling & Shoes
Your tax exempt advance ticket purchase will be benefiting Guardian Brain Foundation a 501c3 non-profit organization

Chance to win a Marvel or Madagascar Bowling Ball, Sony MP3 Player and more

Join us Sunday, November 22nd at 10:00 am $30 per person

Smithtown Lanes
200 Landing Ave
Smithtown, NY 11787-1722
(631) 265-0121

Please contact Amy Mardjani (631)335-9889 for advance ticket information

___________________________________________________________________

This sounds like great fun, and if you are local, please consider coming out to bowl! Hannah loves to bowl, and we plan to be there to help support Alec and his family as well as the Guardian Brain Foundation.

♥Kim

Monday, November 2, 2009

2009-11-03T22:15:00.000-05:00

I hope you all had a fun Halloween. The girls had fun trick-or-treating this year. Hannah was a donut (see the sprinkles on her face?) and Colby was a bumble bee. Hannah and I made the costume together. She wanted to be a donut last year too, which was all her idea. This year it was nice to see that for the most part, Hannah was able to keep up with her friends, which required quite a bit of running! Just thinking back to last year when she was so frustrated that she was so tired and always behind everyone, it was nice to see that this year she is stronger. She did have to take a couple breaks, but it didn't seem to bother her that much.

Along the way we seem to have picked up this guy.....
I just couldn't help it, walking by her and some other dogs that were all to be euthanized. They were from an animal rescue called Last Chance Animal Rescue Fund here on Long Island, www.lcarf.org/index.php She is a 4 month old beagle mix and at this time, we are just fostering her. She would be dog #3, and has to get along with the other two crazy dogs and the rest of our family. The boys were very interested in her when we came in, and she was very timid. All is going well, she is so well behaved and house broken too-at 4 months old. We are "still deciding."

We are still working on the Adopt a Family mission for Christmas this year. Take a look!

♥Kim

*******************************************************************************************************************************************************************************
CHRISTMAS ADOPTIONS

So far we have adopted 3 families for this holiday season, that's awesome! I wanted to provide a few other details on how it works.

A few people have asked me if they can adopt a family with others from their workplace or with other families. YES! If you have co-workers that would like to go in together to adopt a family, that would be great. Also, if you and another family (or others in your family) would like to get together to adopt a cancer family, that's wonderful also.

Another question posed was whether or not someone from out of town could participate in our Christmas adoptions. YES! It is probably more cost effective if you live out of town and want to help if you simply send funds to cover the cost of the gifts. I would be happy to do the shopping for the family. Anyone who knows Hannah knows that this won't be a problem for her, the girl loves to shop! If you would prefer to purchase gifts and send them, that can also be done (although the gifts will have to be shipped here, but still workable!)

After you contact me to let me know you would like a family for adoption, I will contact the hospital to request a family in need. I ask them for names of patient, siblings and parents; ages of all children, sizes of all children and any specific wishes and interests of the family. When all information is received I will pass that along to you. Gifts can then be purchased, wrapped and tagged. The gifts are dropped off to me at my house (or if you live closer to the hospital, they will go directly there). We will take all of the gifts into the hospital on December 15th. The hospital handles the delivery of the gifts to the family. We leave it up to the family to decide if they would like the children to know the gifts are from "Santa" or from the parents, or otherwise. Some families with small children may not want them to know they are being "adopted" for Christmas.

I hope that clears up some questions, but please let me know if there is something I did not answer.

Wednesday, October 28, 2009

2009-10-28T21:07:00.007-04:00

It's Wednesday night, Hannah is in bed, Colby is at a basketball game (she plays), I'm watching the Yankees on tv and Dave is at the game so I thought it was a good time for an update.

First, let me share some pictures from the horse show and dog costume contest this weekend. Colby and her friend Hanna dressed up Hanna's horse as a sheep. Hannah dressed up Tod as a bunny. Hannah was happy that she won the dog costume contest (although the only other dogs in the contest were the barn owners' dogs). It was a very good day, Colby did well in her first horse show at this barn.

Hannah had an appointment with her endocrinologist on Monday. We had many blood results to go over. Amongst many other things, we are watching her thyroid levels and her growth hormone levels. She is still borderline in terms of her growth. She is at the 3% range for height. Before the tumor, she was in the 50 percentile. She has hovered around that 3rd percentile now for the last year or so. Unless she falls under that range, we probably will not put her on growth hormone. We are hoping that is the case, since growth hormone can cause other problems, like tumor recurrence, even more disparity in bone growth (in other words, short spine, while other bones grow longer, causing her to look even more disproportionate than she already does) and a host of other things. It's complicated. It would also require daily injections. You know that wouldn't go over well.

Her thyroid looks fine, her vitamin C is good and her vitamin D is low. Her cholesterol is a bit high also, but we don't have the breakdown of good vs. bad, that is a more complicated test that will be done next time. We also need another urine sample to ensure her kidneys are not excreting too much of the C and D were are supplementing her with, otherwise that could cause problems (like kidney stones.) We have to keep monitoring these things for some time, since some of these issues tend to be delayed by years following radiation. It could be something we see 4-5 years down the road. Isn't that crazy?

We really like her endo, he is a compassionate and intelligent doctor. Unfortunately, those two things don't always go hand in hand with doctors. He is one of the good ones. We don't see him again until after school is out (wow, that's June!) Right now we have NO scheduled doctor appointments (well, other than her flu shot in two weeks.) That is just so strange. I think our next appointment will be brain tumor clinic in December, but not sure on that yet.
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CHRISTMAS ADOPTIONS

So far we have adopted 3 families for this holiday season, that's awesome! I wanted to provide a few other details on how it works.

After you contact me to let me know you would like a family for adoption, I will contact the hospital to request a family in need. I ask them for names of patient, siblings and parents; ages of all children, sizes of all children and any specific wishes and interests of the family. When all information is received I will pass that along to you. Gifts can then be purchased, wrapped and tagged. The gifts are dropped off to me at my house (or if you live closer to the hospital, they will go directly there). I will take all of the gifts in approximately 1-2 weeks before Christmas. The hospital handles the delivery of the gifts to the family. We leave it up to the family to decide if they would like the children to know the gifts are from "Santa" or from the parents, or otherwise. Some families with small children may not want them to know they are being "adopted" for Christmas.

I hope that clears up some questions, but please let me know if there is something I did not answer.

Still watching the Yankee game, not too good so far! Ok, now it's 4-0 and I should go to bed.

♥Kim

Saturday, October 25, 2009

2009-10-24T22:23:00.003-04:00

Hello everyone! We hope you all have had a good couple of weeks since we last updated. Our routine has been the same and everything is relatively smooth here.

Colby has a horse show tomorrow, Hannah chose not to participate. Instead, she entered Tod in the dog costume contest. We have been busy making Tod a costume (don't they make stores for that?) The costume started out as a lamb, and somewhere turned into a bunny. Hannah has matching ears and bunny nose. I'll post pictures after tomorrow. We discussed the fact that she may not win, in hopes that she remains upbeat and calm regardless of the outcome. She seems to have trouble comprehending things like that. I have seen it happen before.

We are actively working on getting Hannah's Cans for Cancer incorporated and approved as a 501 (c) 3 non-profit corporation. We are working on a new logo, website, etc. Lots of exciting things. Some new projects too. Here is our latest:

Last year for Christmas, we had a toy drive and had so much fun handing out toys at the hospital to all the kids. We also adopted three families from the hospital. We adopted one and two wonderful families that read Hannah's blog (hi there!) adopted the other two. It was so wonderful knowing that 3 families that would not otherwise have been able to have Christmas for their kids were given a Christmas. What could be better for Christmas than that?

This year we have decided to focus on adopting families. It is so great to see the generosity of the many individuals and corporations that bring in gifts to the children around the holidays. It is also fulfilling to be able to provide families with the gift of happiness. For these parents to be able to give their kids something from their "wish lists" is a true gift to give in the spirit of the season. I know that with the economy as bad as it's been, many more families will need help this year. These families struggle simply to try and make ends meet through their child's struggle with cancer. To be able to spend any money on things like Christmas presents is out of the question.

This year we will again adopt a family for Christmas. If you think you would also like to adopt a family, we would love to help make that happen. I have spoken with the hospital and they have several families in need of help this Christmas. We would like to match those families up with someone who can help. If you think you can help, please email us. Together we can make a difference.

♥Kim

Monday, October 12, 2009

2009-10-12T22:24:00.010-04:00

Let's start off with the continuing good news, Hannah had a brain MRI today and again, ALL CLEAR! Usually I post ahead of time about upcoming MRI's but this time was a bit different. Hannah had been complaining about headaches for a few weeks now. Besides that, she has been saying she was dizzy, almost more of a feeling that she was going to faint, rather than dizzy. She also has been having some morning sickness again. All of these symptoms can point to a few different problems-one of them being tumor recurrence. I just couldn't bring myself to put it down here, because that would make it more of a reality.

Hannah's MRI was at 9am this morning. We had to be there at 8am in order for her to get her iv started first, and make it to MRI in time. She did great this time in getting the iv in, with hardly a movement and just a few tears. The MRI was quick, only brain this time. We got the results back around 3pm, what a relief! She wasn't very happy with me for taking this picture-this was on our way down to MRI, with the iv in her arm.

So let's back up to the rest of the weekend. Friday started off with Hannah's sleepover at our house. She had been planning and planning this night, with lists all over the house. She made a big welcome sign for the five girls that came, we had make-your-own pizzas, Zubber (weird rubber play dough), smores on the backyard fire pit, jiffy pop, movie and laughing into the night (until about 12:30am.) Loads of fun, Hannah loves to be the host.

Saturday we had horseback riding and began preparing the Halloween goodie bags for the hospital. This is something we have been preparing for for quite a while, ordering goodies online, shopping locally. Hannah decided that this year she would like to take the Halloween bags for the oncology kids at Schneiders. She spent a lot of time up front on ordering just the right goodies for the bags. 400 bags!! The hospital celebrates Halloween during the entire week, and sees about 50 children a day, so 400 bags would suffice for the kids and their siblings. Boy did we have fun putting them together, most bags for the kids that can have food, about 100 for kids who can not eat anything, and 4 bags for the kids in transplant. We ALL got involved in putting them together, Hannah and I made Dave stuff the candy!

There is a part 2 to this-when I explained to Hannah that we would not be at clinic during Halloween to hand out the bags, she wasn't very happy. She loves to do projects like this, but even more, she loves to be personally involved. She wants to be the one handing out things to kids. So, we made a compromise that we had to get approved by the hospital first. We decided to take pumpkins in for the kids to decorate. We got pumpkins donated from several local places-thank you Diane-and took them in today so that Hannah could hand them out to the kids. She decorated a few with Faye from Childlife, and probably would have stayed all day decorating the rest of them.

Back to Saturday-we had to wash and wipe all of the pumpkins before we took them into the kids. After that, Hannah wanted to make a "big sugar cookie" for the Hofstra softball team her "adoptive family." Here she is doing the icing.

Sunday morning we left early to make it to Hofstra's first game of the day. They were all happy to see her, and Hannah loves getting together with them. It was a beautiful day, and we had a good time watching them WIN the first game. Someone brought out visors for the girls, since it was bright and sunny and we had a hard time seeing the field. Here is Hannah surrounded by the team with their cookie she made for them. She just loves going there. We really missed seeing Kayleigh pitch, but we saw Olivia instead, a freshman pitcher who did a great job.

We had to pick up a few more goodies for the Halloween bags, and did that on our way home. We closed the pool, finally, on Sunday afternoon. Did I mention we got the CO last week from the town? FINALLY!! Sunday evening we finished the goodies bags, and packed the car with our wagon full of pumpkins, 2 more boxes of pumpkins and 5 boxes of treat bags.

Hannah and I left bright and early this morning at 6:15am to make it to the hospital by 7:45am. That's the "rest" of the story, whew! Hope your weekend was fun, and a bit less busy than ours!

♥Kim

Sunday, October 4, 2009

2009-10-04T21:20:00.006-04:00

Yesterday was a lot of fun and a big success! We raised $221 for Sarah and Cans for Cancer at the yard sale. Thank you to everyone who donated, visited (so nice to see you Mrs. V!), purchased and helped spread the word! Thanks to Pam, Emilie and Victoria for helping Hannah, Colby and I the ENTIRE day during the sale, couldn't have done it without you all! We were so happy to have a visit from our friend Kaitlyn and her family, who were all out apple picking. We know Kaitlyn from Schneider's, she is now 6 months off treatment for leukemia, and doing great! Here is Kaitlyn, far right with her sister Lauren and Hannah doing a few crafts during the yard sale. Thanks for stopping by, miss seeing you guys at the hall in clinic every week :)

Speaking of yard sale, I wanted to make everyone aware of another yard sale coming up for a good cause. Here is the information for our friend Jackie (remember her from her awesome bone marrow donor drive we participated in?):

The Pay it Forward Garage Sale Fundraiser is in 1 week from today from 10am-4pm. We are very excited as we have TONS of both new and old items for sale. There is definitely something for everyone. Why not start your holiday shopping with us?

Pay it Forward with Jackie Garage Sale Fundraiser

Where: 697 East Drive (Off Route 109)
Lindenhurst, NY 11757
When: October 11, 2009 (raindate: October 12th)
10:00 a.m. - 4:00 p.m.

Thank you to all who have contacted us to arrange a donation drop off or who have already dropped off your generous donations. We ARE still accepting donations - please call Cyndi at 631-495-9483 to coordinate a drop off time.

For more information on Pay it Forward with Jackie or to learn how to make a monetary donation please go to

http://www.facebook.com/l/94d11;payitforwardwithjackie.blogspot.com/

We're on to our next venture...Halloween for the oncology ward, more to follow!

♥Kim

Thursday, October 1, 2009

2009-10-01T22:16:00.002-04:00

Just a reminder to everyone to come by and check out the large yard sale at Cutchogue East on Saturday, 9am-2pm. The weather report is calling for rain, but the sale is INSIDE-so please consider coming out and browsing if you have some spare time.

I am planning a big update for Hannah's Cans for Cancer soon, lots of exciting things happening! For now, please please pass this along to anyone local encouraging them to come by the yard sale!

♥Kim

Monday, September 28, 2009

2009-09-28T21:00:00.002-04:00

Three updates in a week, we haven't done that in a long time. But, we have some important information we want to share. Please feel free to share this with any friends also, the more the better!

This Saturday, October 3rd is the neighborhood yard sale and chinese auction at Cutchogue East Elementary School. We will be there with a table selling up a storm (hopefully). All monies collected will be donated to the "Auctions for Sarah" fund and Hannah's Cans for Cancer. We will have lots of goodies to sell, including some things that were donated for the ebay Auctions for Sarah. Hannah also plans on making some of her famous baked goods. We will also be holding a special raffle at our table. So...lots to see and choose from!

If you have any items you would like to donate to the cause, we would love to have your goodies too. Please email me at kprokop@optonline.net or call at 631-298-3580 so we can arrange a pick up by Friday.

If you have nothing to donate, but have some time on Saturday (and maybe you're feeling hungry for some goodies), please come out to the sale. We will be in the parking lot at the school from 9am-3pm selling and raffling. It's a very large organized sale, and should be lots of fun.

Sunday, September 27, 2009

2009-09-27T22:11:00.003-04:00

We arrived back home from Indiana tonight. We ended up leaving Thursday evening around 5pm. We drove until the middle of Ohio, stopped around 3am. The next morning we drove another 5 hours and arrived at my mom and dad's by 1pm. The trip was about 14 1/2 hours in all, the girls did very well. They fell asleep around 10pm, and slept until we stopped. There was a moment of thinking that we should just keep driving, but that passed pretty quickly and we were all in bed by 3am.

Although we all wished we were there for another, more happy reason, it was nice to be with so many relatives. The girls were happy to be with Sydney again, they were asking for her the whole way there. The services were very nice, so many friends and family showed up to say goodbye to grandma. My cousin Darrin spoke at the funeral so eloquently. I don't know how he did it, because he had everyone in tears. I'm sure grandma was looking down smiling though. Playing cards with grandpa and smiling.

We left to drive back home this morning at 5:30am NY time (4:30am Indiana time). The drive home took about 13 1/2 hours, and we were home by 7pm. The girls slept again for a good part of the time-including the big girl in the car too. Much easier leaving early in the morning than starting out late in the day.

There is no school tomorrow for Yom Kippur so we have a day to recuperate and get off our fast food high. I have some pictures to post, tomorrow. One other thing, tomorrow (Monday, September 28) Chili's Restaurant is donating 100%, YES 100%, of their proceeds to St. Jude's Research Hospital. It's a great opportunity to help fund research for pediatric cancer. So, if you get hungry tomorrow, stop by Chili's!

♥Kim

Thursday, September 24, 2009

2009-09-23T22:17:00.006-04:00

On Tuesday, September 22nd, my grandma Stib passed away (my dad's mother). She lived a long and full life, she was 95 when she died. I am lucky that I have many great memories of my grandparents from when I was young, growing up right down the street from both sets of grandparents. So many friends of mine did not get to experience their grandparents when they were growing up.

Our family is traveling to Indiana today-in about an hour for the funeral services. We have decided to drive, since the flight times and prices were not so good for a last minute flight. My mom and dad have made the 13 hour trek several times, but we have never driven before. Cross your fingers that we make it with minimal traffic, minimal bathroom breaks and not too much head bobbing from drowsy drivers (that being Dave and I.) He is notorious for sleeping while driving. I haven't done that since I crashed my car once when falling asleep at 55mph. Ok, too much information!

Maybe Grandma heard my cries for mercy, and got me out of the half marathon...he he. Here is Grandma with Colby, Hannah and Sydney in 2006 (pre tumor for Hannah.)

♥Kim