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!!!
♥
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