January 30, 2013

January 30th is here again. Today marks the 6 year anniversary of Hannah's diagnosis. It's hard to believe that it has been 6 years since Hannah was diagnosed. In some ways it seems like another lifetime. But there are the daily reminders of her continued struggles and challenges from the cancer that bring the past back from memory. I thought it was interesting that Hannah wrote an essay for school last week about one of her life experiences, explaining her life with cancer. Here is her essay:


Hannah Prokop                                                                                                             January 17, 2013

Hospital                                                                                                                                   



            When I was 7, I started having serious headaches and stomachaches. Every day I would wake up and throw up. It was very hard to go through this every day, the same thing. My mom and my dad were very worried it might be something very serious. My parents took me to many different doctors and no one could tell me what was wrong.  

One day we decided to go to the hospital and find out what was going on. When we got there we went to the ER. We had to wait a while to see a doctor. I didn’t know what was going to happen next. When I finally went in a room the nurse told my mom that they had to take blood. I was very scared I knew I didn’t like ivs. After they put the iv in I was crying. Then we had to wait for the doctor. The doctor came in, he examined me and he said he will bring in the surgeon. When the surgeon came in he examined me too, then he asked my mom some questions about my health, what has been happening, and what my symptoms were.

            After the doctor talked to me and my mom he pulled up my recent x-rays of my brain. He looked at it for a while, my mom and I were so tense and scared. Then, he told us that I had a brain tumor. I had medulloblastoma. We both started to cry. He started to explain to us what that was and what was going to happen. He told us that I was going to have to go through several years of chemotherapy.

             I had to go to lots of different hospitals with different machines to help me. It was very hard for me because some of the doctors couldn’t figure out what was wrong at some times. I would just keep going through the same routine every day with lots of stress. Some days were better than others. I would go to therapy every day and I would love to ride my bike around. I would even get to ride it all around the hospital. I would ride it around the Saint Charles hospital, go to get my favorite cookies in the cafeteria, and my favorite thing was to go down on the first floor where my mom from my room could see me on the security camera. I had to go through lots of difficult times having cancer.
             In my journey to fight cancer I went through lots of challenges. I successfully overcame my challenges and I am now living a happy healthy life. I could have never overcome cancer if I didn’t have all the help I had pushing me to keep trying. I know everyone is so proud of me.              

 I thought it was pretty interesting to hear her perspective about her diagnosis. She is right though, we are all very proud of her. 

           I haven't posted in a very long time, things just get away from me, we get busy with school and other projects and before you know it, months have passed! Since I last updated in October, we've been busy busy. Hannah's Cans for Cancer sponsored another Halloween for Cohen Children's Hospital. This year we delivered over 100 pumpkins for decorating and over 400 goodie bags that we put together. It's one of Hannah's favorite times of year, she loves to shop for all the things she thinks the kids will like playing with.


Hannah's Cans for Cancer also had another magazine drive for the hospital. We started this last year, and the hospital really liked getting all the magazines for the kids and parents. They were so appreciative that we were continuing it this year also!
Bone marrow unit gifts

In December, we sponsored a family for Christmas. Again, another shopping experience for Miss Hannah that she loved! Every day in December she came to me with suggestions of things to get for the kids. As I'm writing this now, she's online looking at earrings for herself...and she doesn't even have pierced ears...haha!!

We made over 400 goodie bags
Hannah has been doing well. School has become a good routine now for her. She made honor roll the first quarter, and only missed high honor roll by 1/2 of a point! I know she feels so good about that, and we're very proud of her. As the year progresses, things are getting a bit more difficult, but her teachers are continuing to work to modify things and help her through her IEP. She works so hard every night, and while school is not something she enjoys because it's so hard for her, she's hanging in there.

We spent the holidays here in New York and the family traveled to be there with us, which was nice. The girls always have a great time when we're all together and we did things like our annual Pictionary game, movie popcorn night and way too much good food!

Hannah had her annual MRI's a few weeks ago, and we were relieved to get the ALL CLEAR again! It was a long one this time, made even longer when the machine went down in the middle. They wouldn't let Hannah get up or move at all, so it was a very long ordeal for her and she was not happy. She did great though, and collected on all of her "MRI deals" she made with all of us!

Hannah had an endocrine appointment in November. She is no longer on the regular growth chart, just barely off now. We spoke at length with the doctor about what to do now. Hannah is bothered by her height, and has asked me several times about growth hormone to help her grow. I know many cancer kids who are on growth hormone without any problems and are doing well. However, I just will never get out of my head our neurosurgeon's comment when he reviewed a suspicious scan with me. He told me that he had three medullo kids that were all doing well, no evidence of disease, that started growth hormone. All of them relapsed, two of them died. He said that in med school they used to give growth hormone to to tumors so that they would grow. He said "don't do it." I know that's his opinion, and many other doctors think it's fine for some kids, but I just can't get past that.

In order to even begin to give her growth hormone, she would have to be admitted to the hospital for a growth hormone stimulus test, to see if her body is producing growth hormone. She would then only be treated if she was deficient. We decided we weren't going to do the test, because if it did come back deficient, we wouldn't treat her anyway. She is not that far off the charts, and is still growing and hasn't reached puberty yet. Hannah did speak up and ask the doctor with tears in her eyes and her little shaky voice about the whole thing. She said she didn't like being short. So, he told her that they were daily shots....and you should have seen the look on her face! She asked if she could have a pill instead. There is no pill, they are injection only. She isn't asking me about it anymore.

Hannah has clinic again in March. She is still having those strange eye episodes, and is still on the anti-seizure medication, so will review that again. As well, she is still on the anti-nausea medication. Not sure if that one will ever go away. Each morning, she still complains if not feeling well and still doesn't eat anything. Ugh.

Thanks for keeping up with us. It's been 6 long years, what a ride!
Looking Good!

Kim

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 (kprokop@optonline.net) 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
Glamour/Self
Guideposts
Health/Sunset
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!


Kim

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 Mardjanis...love 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
Kim

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 kprokop@optonline.net. 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!!


Kim

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 kprokop@optonline.net or;
  • Payment made directly to ACS via the Relay website here: http://main.acsevents.org/site/TR    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
 Kim

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.

Kim