Sunday, October 14, 2012

Hi Everyone, 

It's time again for Hannah's Cans for Cancer magazine drive for Cohen's Children's hospital. Unlike most doctor's offices we all go to, there are NO magazines at the hospital for parents or kids to read! We spent many hours in clinic and in-patient and magazines would have been a great help. We started this drive last year, and the hospital is so appreciative of the subscriptions, they have been a big hit!

Please consider donating a magazine subscription for the pediatric oncology ward at Cohen's Children's hospital. We are ordering the magazines through Hannah's school, a program that gets subscriptions for up to 85% off cover prices. The magazines run anywhere from $15-$25 for an entire year subscription. If you would like to donate a subscription, you can do it one of three ways:

1. send me the money via paypal ( and Hannah and I will take care of ordering the subscription for you.
2. Send us a check via mail, we will take care of the ordering the subscription for you. Please make checks out to Kim Prokop, 1556 Grand Avenue, Mattituck, NY 11952
3. Order yourself online. It's easy, just leave a comment here with your email address and I will send you a link to order online.

Here is list of the magazines we will provide again this year for the hospital.
Sports Illustrated Kids
Sports Illustrated
Better Homes and Gardens/Ladies Home Journal
Cooking Light/Real Simple
Family Circle/Better Homes and Gardens
Reader's Digest
Family Fun Magazine
Good Housekeeping/Redbook
Seventeen/Teen Vogue
National Geographic Kids
Travel & Leisure
Time Magazine
Good Housekeeping/Women's Day
Cooking Light
Shape and Women's Health
Car and Driver/Road & Track
Eating Well/Every Day with Rachael Ray

Thanks everyone for your support!

xoxo Kim

September 4, 2012

All summer has gone by since I last posted, where did the time go? Now I have to think back and rack my brain to remember just what all we did!

From the end of June through the month of July, we spent time traveling with Colby's travel lacrosse team. The team had a successful year, and lots of fun. Hannah liked traveling just to check out the pools at the different hotels.

Relaxingin the back of the car at a tourney
We had a yard sale in July, and now I remember why I haven't had one in 10 years. After weeks and weeks of preparation, we opened at 8am, and by 10am it was raining steadily. Hannah also decided to do a fundraiser for Hannah's Cans for Cancer during the yard sale. She put together a huge stash of stuffed animals, many of them brand new with tags on and asked for donations for the animals. Some of the animals were from her personal collection, some of them were donated from the previous owners of the Love Lane Sweet Shoppe, and some were donated from my parents from a Christmas donation program they run in Indiana. Hannah raised $54 for Cans for Cancer, not bad considering we were really only open for two hours.

We also participated in the Mattituck Love Lane Street Festival this year, another fundraiser for Hannah's Cans for Cancer. Hannah made over $400 selling lemonade on a very hot day in July! It was a great success and we hope to do it again next year.
Lemonade at the Street Festival

Colby Hannah and Sydney at Notre Dame

At the end of July cousin Sydney came to visit for a week, then the girls and I drove to Indiana to spend a week with Grandma and Grandpa. The girls had been looking forward to going to Indiana for a long time, and they always have a good time. I went home to attend my 30 year high school class reunion, which was a lot of fun.

Carlson's in Indiana

So, other than traveling to New Jersey, Delaware, and Pennsylvania with lacrosse, we travelled to Massachusetts to hike the high point in the state, went to two Yankee games, went to the ocean (only once unfortunately), swam in the pool, hung out with friends and relaxed! The summer seems to have just flown by.

School starts tomorrow! Colby will be in 10th grade, and Hannah in 8th. It's no surprise to us, but Hannah is struggling with starting school again. There will be many changes for Hannah this year, the biggest being a change in the aide she has assisting her. The school has decided that after the last few years with the same aide whom Hannah really adores, she is no longer able to continue with this aide. Hannah is very troubled by this, and has declared that she "is not going to school and I can't make her." She also doesn't have one of her good friends from her special education class with her this year. It seems that all of her security "blankets" have been removed and many things will be very different for her this year. It is inevitable in life, and in school, it's just hard for her.

Hannah at the Hampton Classic last week
 I met with Hannah's teachers this year, just to give them an overview of her issues. I really like her special education teacher this year, and Hannah seems to like her also. I hope this will be our saving grace this year! I have taken Hannah to school a few times, we went in the visit the nurse she likes, we went over her schedule, and we went and set up her locker today. We also went in to speak to her guidance counselor about this year, to try and allay some of her fears. Hannah found out who her aide will be to help her out at the beginning of the year, getting her to where she needs to be with what she needs for class (that's one of her biggest weaknesses) and she is familiar with the person. It's still way out of her comfort zone and change is still very difficult for her. For the past week, since I told her she won't have her previous aide, she has been weepy over the smaller things. I'll be holding my breath tomorrow waiting for her to walk in the building.

On the medical front, Hannah has been doing well. The new orthotics she is wearing seem to help with her foot pain, so that's encouraging. Her endocrinologist is discouraged by her growth, Hannah is no longer on the regular growth chart. She had been hanging onto the 1th percentile, but has since fallen below the scale. Her growth hormones aren't disastrously low, they may be an issue. The doctor wants to follow her a bit more closely, so we will see him in three months. He will check her growth then and if necessary (which I'm anticipating it will be) Hannah will have a growth hormone stimulus test done. This test will determine if her body is producing the necessary amount of growth hormone. She will have to be in the hospital while having this test done, since it involves an IV, and administration of drugs which could lower her blood pressure to a dangerous level. But, more on that later, when we know whether or not she will have to have the test.

We also had a visit to her oncologist and neurologist. Hannah is still on the anti-seizure medicine to keep the eye episodes at bay. For the most part it's working, she usually doesn't have more than one per day and they are minimal when they happen. She has been having headaches, but after questioning her, the doctor didn't think they warranted moving up her MRI, which is scheduled for November, which is good. We also spoke to the oncologist about her continued morning nausea. The doctor recommended a new drug, a different agent which he thought may work well for Hannah. However, when checking on it, he discovered it is only given by IV, so that's not an option for Hannah. He did recommend an anti-nausea patch, scopolamine, to try. We immediately tried it, but Hannah woke the next morning with many adverse symptoms including dizziness, headache, general fatigue and weakness, and cognitive issues. She was having trouble holding a conversation with me. After a quick evaluation and attempting to speak with her, but having her look off into space, I took the patch off. She slowly returned to normal, but it took about 48 hours. Like the oncologist told Hannah, we may never be able to get everything to "perfect." We'll keep trying, but when things are "pretty good" sometimes we have to learn to leave them there. So we'll see the endocrinologist in November and have MRIs done at the end of November or beginning of December.

So I hope all of you have had a great summer. Thanks for continuing to follow us here, and to support Hannah. Love to all!


Saturday, June 9, 2012

Our Relay for Life was another success for our team this year. We created 41 luminaries, thank you to everyone who supported us in this effort. 

As always, Hannah prepared a game for our campsite during Relay. It's a great way to raise money for our team during the Relay. This year, we had a ping pong toss game. It was very popular, and we had a lot of fun with it. Our team raised $262 from the game, which is great! Chances were only $1 each, so it was quite successful!!
The girl pictured here with Hannah is a little girl Hannah met last year at Relay. This girl from Southold was very nice, came over to Hannah and said "do you remember me from last year?" and spent the rest of the night with Hannah. This little girl has a terminal illness. Not cancer, but another illness she has to manage and deal with on a daily basis. What an inspiration she was! Hannah really had a good time hanging out with her. 

We were happy to have some new team members this year, the Brisotti's mom is pictured above, and our good friends, the Mardjani's. Here are a few pictures with our good friend Alec and his family. 

We met the Mardjani's at the hospital, Hannah and Alec share the same brain tumor diagnosis. A nicer family you couldn't meet-we love them and were so happy they came over to share in the fun with  us!

We got another good photo of Hannah with her "HANNAH" luminary bags.           

I'm glad we got this photo, right before the luminary lap started at 9:30pm because shortly after I thought we might be taking Hannah to the ER. Hannah was running with her friends back to our tent, and she tripped and fell over a wire and we thought she may have broken her wrist.  A picture of Hannah with her arm in a cast for the first six weeks of summer flashed through my mind! She was hysterical in pain. We took her back to the tent, iced her arm and she went home. The next morning, still in quite a bit of pain we headed out to get an xray. Thank goodness, it wasn't broken. It has improved day to day and although it's still tender, it's not an issue. Dave and I just shake our heads in wonder. 

It really was a fun night for Hannah, until the end, and for us, that's what it's all about, celebrating that Hannah is a survivor!! Thank you to all of our supporters, and our awesome team members-the Reimers, the Graebs, the Brisottis, the all of you!!

I will leave you with a few more photos from the night, and a promise of another post very soon (Hannah turned 13 this week!!!)

Our Relay girls

Our family

Some of the quarters from our Quarters Lap

Colby and her friends

Hannah and her friends

Sunday, May 27, 2012

Hello everyone, just a quick update to say THANK YOU to everyone that has sent money and donations for luminaries for our upcoming RELAY FOR LIFE. Relay is this Saturday, and we are at 32! Thank you for your continued support. There still is time, if you'd like to order a luminary for Hannah or a loved one. You can email me with your information and either send a check, or paypal the money to me at Even if I get it after Relay, they will still accept the donation.

Hannah and I have been working diligently with our team to get everything ready. This year, Hannah has organized a fish bowl ping pong toss (you remember the kind that usually get you a goldfish to take home.) We have candy and lots of prizes to hand out, and Hannah is pretty excited about it. She loves to run the games at Relay, it's her favorite part-besides the luminaries!!

I'll be sure to post lots of photos after the event.

We also have to make a decision on a seizure medicine for Hannah soon. We took her off the last medicine because we thought it was producing some undesired side effects, however it appears now that Hannah actually had a virus. I'm pretty sure it was a virus, since I got it next and we both still have it :-(  Hannah has been off the medicine now for almost 2 weeks and her eye episodes have returned, and she's having several a day again. I plan on contacting her neurologist this week to discuss with her. But for now, we focus on Relay and pray for NO RAIN!!


Monday, April 30, 2012

Hello everyone,

Not much new medical information to report. Hannah called me after school today to say her feet hurt too badly to play in today's school lacrosse game. She ended up playing for about 3 minutes on defense, and was doing some running and she made it through. I don't know why they hurt so badly this morning, she didn't do any out of the ordinary physical activity this weekend! We go tomorrow to get her fit for new orthotics, hopefully these will be better than the last ones, which were just too painful for her to wear.

Well, it's that time of year again...RELAY for LIFE on June 2nd!  This year again it was a question of whether to participate, due to issues with the American Cancer Society and their use of funds (not only for childhood cancer, but use of funds in general.) Our team met, and it was Hannah who made the decision that she wanted to be involved. Relay for us has never been about being the team that raises the most money, but rather about supporting Hannah and the other cancer survivors, and those who have passed away from cancer.

This event really makes Hannah feel special. She is able to do the survivor lap, she wears that special purple shirt that lets everyone know that she's a survivor, she's out there picking up all the quarters from our quarter lap, and she gets to run a game from our tent. She feels like she is in charge that day, and feels so supported by everyone there. She walks around the track and sees all the luminary bags we have made, and all of the bags around the track in her honor also. I think this is one of her favorite things. So, for us, this is about supporting Hannah and her struggles and triumphs over cancer! Sometimes the further you get away from the cancer, the harder it can be. Others don't see the difficulties that still exist in your life. They don't see how hard school is for you, how emotionally and physically demanding each day is for you, how just putting your hair up in the morning and noticing the bald spot again and again is challenging. So for this one day, it's all about her and supporting her.

We hope that you will all join us again this year in supporting Hannah and all those you care about who have had cancer. Here is Hannah's annual picture at Relay, with her Hannah bags!!

Please consider purchasing a luminary this year in support of Hannah or another loved one. 

The cost is $10 each. We will decorate one for you, 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. 

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
Payment can be made by any of the following:
  • Check made out to American Cancer Society-send to us at 1556 Grand Avenue, Mattituck, NY 11952 or;
  • Paypal money to us at or;
  • Payment made directly to ACS via the Relay website here:    You can fill out all the information for your bag, which will be sent to us, and you can make payment via your credit card. If you donate this way, please go through the "participant" option, and put in Hannah Prokop so the notice is sent to us via their website. You may also want to email me and let me know if you do it this way, so I'm on the lookout for it. 

Thank you all again for your continued support for Hannah and for the fight against cancer. It really makes a difference to us!!

Here are also a few other photos of the girls with all luminary bags from 2011, and some of Hannah running her duckie game last year. Last year we came up with the wonderful idea of an ice cream truck, which would have gone over well, except that it was so COLD the day of Relay!   
luminary bags 2011

Hannah's duckie game
ice cream team!
Spin the wheel

our family 2011

Sunday, April 23, 2012

Hello everyone,

It's been about a month since I last wrote in, and things continue to work and change here in the Prokop household. Hannah is doing well, although her eye episodes have returned to daily episodes. She says they are not as intense as before, and they are not as long in duration, but they are every day. Initially when she began the anti-seizure medicine, we were supposed to double the dosage after 2 weeks. However, at that time she was doing so well, we didn't increase it. Now, I'm wondering if her body has adjusted to it, so she's is having the eye seizures once again. I haven't wanted to increase the medicine, since last week and this week she is having state tests in school. We have an appointment at the neurologist's office the first week of May, so we'll see what they say. They haven't been the most helpful though in this ordeal, so it may be a little of what they say and a little of what we think!

I think Hannah went to the nurse last week every day, not feeling well. It's her stomach or her head, or a combination of the two. I really pushed her to go to school though, so she didn't miss any of the state tests. She did stay in school though, despite not feeling her best.

On Friday of last week we went to a new orthopedic doctor. He was recommended by our pediatrician, although he isn't a pediatric orthopedist. He is actually an orthopedic surgeon who specializes in feet. Hannah is having so much pain in her feet, even more since lacrosse season started in school.  Some days are better than others, but all have pain, sometimes so badly she is limping around. I liked this new doctor, he seemed very thorough. He took about 15 xrays, and thinks it's a combination of things probably causing her pain. He thinks it's her foot pronation, which is pretty significant on one side, and also her low bone density and something called Sever's disease. Sever's disease is a swelling of the heel bone, actually the growth plate of the heel. It can become inflamed during a child's growth phase, especially with activity. It's also aggravated by pronation. This, combined with low bone density is a recipe for pain for Hannah. He recommended new orthotics, especially made for her pronation as well as Sever's issues. Now, she just has to wear them. He wants her in them 24/7. When she's at home, if she doesn't have the orthotics on, then he said she should wear a show with a heel, to take the pressure off the heel and correct the flatness of her arches. That should be interesting, Hannah in high heels!

The doctor did seem a  bit concerned over her low bone density, and that it hasn't gotten any better with vitamin D supplements. I didn't realize it could get better really, I always thought we were supplementing her to keep it steady.  I plan to talk with her endocrinologist when we go in July to ask him about it.  The doctor asked if I had low bone density, and I have no idea.

So, although I'm not totally convinced, I'm hopeful. The doctor also said that Hannah needs regular exercise, instead of a start and stop approach, which will just keep the cycle going. He said 3 times a week on a treadmill would be great, or any type of similar activity, as long as it's consistent. We always try to keep her active, which isn't always the easiest. I will be activity campaigning now for a new treadmill!!

Speaking of low bone density, Colby has a broken foot! She has been experiencing pain in her foot since the first school lacrosse game of the season. She has been limping around, but continued to play and practice. The coach didn't even know she was hurt. We knew though, since she didn't seem to run as well during games, and as soon as she got off the field and out of sight of anyone else, she was limping big time! I took her over break last week to the podiatrist and right away he said "it sounds like it's broken." WHAT??? That never entered my mind that it may be broken. But sure enough, it was a stress fracture. I took her the next day to an orthopedist who confirmed the break and told her it would be 4 weeks in a boot to heal the break all the way. She negotiated him down to a repeat visit in 3 weeks, so we go back the first week of May. Yes, the first week of May I'll be taking them both from one doctor to the next. Then next on the agenda will be bone density scans for all three of us. Hannah is already scheduled for one in July, but now Colby and I will be getting them also. I already have Colby started on vitamin D supplements, it can't hurt.

Thanks for stopping by and reading about our latest. I'll write again soon about the benefit we went to tonight for a little girl out here on Long Island, it was very touching.


Sunday, March 18, 2012

March Madness for sure!! A quick update. Hannah started the Trileptal (anti-seizure drug) about 10 days ago. The morning she started the pills she had already had two eye episodes. After starting the Trileptal, she has had NO episodes!! We were very shocked that the medicine would work so quickly. In fact, most of the doctors didn't think it would work at all, but acquiesced and gave it to me anyway.

We have been watching her closely for any symptoms from this new medicine, because some of them can be quite serious. She has had a few headaches lately, and seemed more fatigued than normal, both which can be side effects from the medicine. She had been complaining also since yesterday that she really didn't feel well. She stayed home from school one day last week. We realized this morning that she hadn't taken her regular anti-nausea pills the last 2 days!! So, we got her back on track with that today and hopefully that won't be an issue any longer.

**Update** Hannah just came in to let me know she had an eye episode. This is the first real episode she has experienced since starting the Trileptal. I wonder if her body is adjusting to the medicine already. We are supposed to double the dose this week, but I am not planning on doing that, considering how well it's working already. We will take her in in about a month to have her sodium levels checked. A side effect of this medicine is lowered sodium levels, which can be a serious condition. However, the dose she is taking right now is very low, so it would be unusual for her to experience a drop in her levels.

It's kind of a catch-22 situation. On the one hand, we are happy that we have found something that stops these eye episodes for Hannah. On the other hand, we don't really want her to be yet another medicine, especially an anti-seizure medicine. For now, we'll keep her on the medicine and see how she continues to tolerate it.

Other than the medical update, we've been keeping busy as usual. We threw a surprise birthday party for Colby on Friday, who turned 15 and boy was she surprised! It was the best party, about 30 kids or so attended and she really had a great time. Don't think I'll be able to top that one for quite some time!

It's lacrosse season in the house now, and both of the girls are playing. Colby made the varsity high school team this year and also plays on a travel team (and Dave's an assistant coach for the team). Hannah's junior high school team will start next week with practices. We love watching both of them play.

It has not been so good lately on the cancer front, with many of our little friends relapsing or dying. Just a few days ago another little boy from Iowa that we had come to know and love died from the spread of his medulloblastoma. He was 7 years old. Just heartbreaking. We continue to hope and pray for all of them.

Back to the real March Madness...the games! Go  Hoosiers!!


Monday, February 27, 2012

Has it really been a month since I updated Hannah's site? Seems like so much has happened since then. Hannah remains pretty much the same, physically, since my last update, although we have been trying different medicines and strategies to see if anything stops her eye episodes.

Earlier in the month, we took her off her anti-nausea medicine completely and replaced it with another medicine she had been on previously. The first few days after removing the medicine, Hannah only had about 2 episodes per day. I thought maybe we had found the answer! But, after those first few days, she began having more episodes, leveling off at about 4 per day. So, they didn't go away.

We initially started this new medicine at a higher dose than normal. However, this medicine is not only an antiemetic, it's also prescribed for anxiety. At the dosage she was on, it commonly causes tiredness and irritability. Oh boy, yes it did. After two days I contacted the doctor to let him know this dosage would not work for very long. I could barely get her out of bed to go to school. For the rest of the day, she was very irritable, irrational, and hostile at times. When she wasn't hostile, she was crying.

We cut the dose in half to see how that would work. Initially it was acceptable, but soon after it was evident that she wasn't feeling well. She had two mornings where she was standing outside the car vomiting, just like the old days. It wasn't good. I would have loved to have kept her on this new medicine, at the lower dose, but it just wasn't working for her.

Throughout all of this, the change in medicines, her eye episodes have gone up and down, but remained overall consistent at around 4 per day. Our next step is to put her on Triliptal, and anti-seizure drug. This drug, is meant specifically for partial seizures. But, the doctor didn't want to start the Triliptal without getting her nausea under control first. However, we can only do this one step at a time. This week, the doctor put Hannah back on the Kytril, the drug that she has been on for quite a while. Our trial did not show that the Kytril was causing the eye episodes, and she obviously needs it to control the nausea. On Saturday Hannah started the Kytril again. On Saturday Hannah had 7 eye episodes. On Sunday, Hannah had 5 episodes. Today, she had three.

Go figure. This thing is a crazy roller coaster ride for her. It's almost difficult now for her to count them during the day because she is so used to having them, and just going on with her day. These episodes are like a normal part of her day now, almost like counting how many times you breath or blink your eyes. I taped an index card to her planner, and she marks down when she has an episode during the day at school. This is the best we can do, and it's probably as accurate as it can get.

We are tracking her episodes now for a week, then will let the doctor decide when and if to start the anti-seizure medicine. That's where I feel like we're headed, but looking at the side effects of Triliptal, some of them are quite scary. I know that the drug companies have to list everything, but it's a bit daunting to see them all on paper.

So, after our own one person trial, we seem to be no closer to anything. Colby asked Hannah tonight, "what do you do if you have an eye thing during lacrosse?" Hannah just casually replied, "duck."

I did take Colby and Hannah both to the orthopedist last week, Colby for a slight scoliosis and Hannah for her ongoing bone pain, but that's a story for another post. I'm sure you can only handle so much medical talk at one time. Suffice it to say that both girls thought the doctor "didn't know anything." That pretty much sums it up!


January 30, 2012

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

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

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

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

8th birthday
In the hospital with Jets players, though I don't know their names!
I have learned it's not all about the cancer patient. It's also about the family. It's about the other daughter that's left behind, without mom and dad together anymore. It's about her spending her birthday in Boston in the hospital because that's where her sister is, while mom is screaming "shut up, it's only hair." Yep, one of my more stellar moments. It's about grandma and grandpa who drop their lives, and come out to live with us for an extended amount of time so that everything continues to function for everyone left behind. It's about what you can't do by yourself that everyone else pitches in to do for you. And that it's ok to accept their help.

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

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

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

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

Hannah and Tod


Thursday, January 12, 2012

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

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

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

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

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

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

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