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
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
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.
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?
♥
Tuesday, December 13, 2011
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!!
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!
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!!
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.
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
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| 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! |
 |
| Everything off and not happy, it hurt to remove everything! |
 |
| With the head wrap off |
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!
♥
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
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.
♥
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
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!!
♥
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.
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
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.
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| Hannah at Christmas last year in NYC |
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!!!
♥
November 5, 2011
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| Hannah putting together the bags |
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.
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| washing the pumpkins |
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| 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!!!
♥
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........
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
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........
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| 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.
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| Hannah with an Elk |
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| Our pet buffalo |
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| Waterfall in Yellowstone |
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| 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?
♥
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
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!
♥
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
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 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.
♥
Monday, May 2, 2011
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
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.
♥
Thursday, April 28, 2011
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
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.
♥
Saturday, April 16, 2011
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.
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
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
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!!
♥
Sunday, January 30, 2011
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
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.
♥
Wednesday, January 19, 2011
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
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.
♥
Wednesday, January 19, 2011
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
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.
♥
Monday, January 17, 2011
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
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!
♥
Wednesday, January 5, 2011
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.
♥
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