Saturday, November 26, 2011

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

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

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

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

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

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

Saturday, May 14, 2011

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