Monday, April 13, 2009

Wow, this is probably the longest I have ever gone without updating Hannah's site. We've been very busy since our last update and our Hofstra game.

First of all, I hope everyone had a blessed and peaceful Easter. As we were standing in the vestibule at church on Sunday (yes, because we didn't show up early enough to get a seat) I was trying to remember where we were for Easter last year. I do remember 2 years ago on Easter. We were in Boston because Hannah was still getting radiation my parents brought Colby up for the weekend and we were all together. Hannah was still in her wheelchair, could not walk by herself. She had lost her hair, and it was new to us, we were working through the new phase. At that point, I still couldn't make it through church without crying. So we all sat there while I tried not to look like a sobbing fool in church. I was so mad and so sad all at once at God for letting this happen to Hannah.

I have, of course, since reconciled those feelings. God didn't make Hannah sick, and I don't believe he can also reach down and ceremoniously heal her. There is some kind of a plan, and somehow we all fit into that. We can pray and pray for God to "change" things, but I don't know if I believe that prayer can actually "change" his overall plan. I hope that Hannah has been chosen as one of those children that will live on to help encourage other children to fight, to give others hope.

Hannah has been doing well. We were on spring break this past week, and today. During her last week of school, she was struggling to stay in school each day, and I usually got a call from the nurse's office from her. We had been working on a few things to help her stay there, I finally bribed her with a hamster. At first the deal was that if she stayed in school for 10 days straight she could get a hamster. I quickly reconfigured that deal to say if she stayed in until Relay for Life, which is at the end of May, she could get one. She wants a hamster so badly and she constantly reminding me of the deal.




She has felt very good last week, but then again, they have been out of school. We have been working with a few doctors to help Hannah work out some of the issues she is experiencing, both physically and emotionally. One of the things that has come up has been Hannah's problems with school. She doesn't like school. I think it's mentally a big challenge for her to keep up with everything. But, she also has been having emotional issues with school too. All in all, she just doesn't want to be there. We think her stomach issues are a combination of neurological and emotional problems. The medicine is helping her, so she is not throwing up anymore, but she is still experiencing real stomach pain. What is causing that pain is something we're working on. We go to school through the end of June, so we have about 2 1/2 more months left.

The first half of our spring break was filled with appointments, but the second half we headed to Washington DC. Dave had done extensive research, and had about 150 places he wanted to see. The first day there, we stayed out for 12 hours! Yes, we were exhausted. I think we forgot how quickly Hannah tires. We spent a good part of the first day carrying her. The second day we commandered a wheelchair, which made our day SO much easier. I know the kids' feet hurt because my feet hurt too (and my legs and back and head.) By day 3, we had the pace down and there was much less whining all around. Hannah said her favorite was the National Zoo, I think Colby's was the Ford's Theatre where Lincoln was shot, and mine was probably Arlington National cemetary. I think Dave was on a high the whole time, he liked it all. We stayed at Brooks and Rebecca's condo (Brooks is my cousin.) It was perfect, and we were so grateful to them. Brooks also got us into the Capitol for a private tour, which was incredible. I could write and write about it, we did have a good time. Of course I have a million photos, here are a few.

I better sign off for now. If you have made it this far...CONGRATULATIONS!! I won't wait this long before my next update, so that your eyes aren't crossed after reading. Thanks for handing in there with us...lots more to come on our Relay!

♥Kim

Sunday, March 29, 2009

Last week was a bit of an improvement for Hannah over the week before. She missed school on Wednesday, but made it all of the other days. Each day she called from the school nurse's office, with a report of a stomach ache, wanting to come home. Each day I worked with her (bribed her) to stay in school. She was able to make it through, even though she would have rather come home. 

Yesterday and today were very busy days. The girls and I went to our first Hofstra softball game. Dave was at the Duke/Dartmouth lacrosse game for Autism, so he didn't come with us. Thankfully the weather was so nice. They asked Hannah to throw out the first pitch of the game, so she wore her official Hofstra jersey. She was nervous, and must have told me 30 times that she was too scared, but when the time came, she walked right out with the team. She moved up a bit closer to the pitcher, and got one in right over the plate! They announced her name, and that she had been "adopted" through the Friends of Jaclyn Program by the Hofstra girls Softball team. 

It was great, and she was so proud of herself. We stayed for the entire first game, which they won 1-0. All of the girls on the team were so welcoming to her, and made her feel very happy to be there. AFter she threw out the pitch, they gave her the ball, which they all signed after the game. We really had a good time. Here are some photos from our day.

Today the girls went with Dave to a friend's son's Eagle Scout Award ceremony. I was home on the couch suffering from this stupid lyme disease still. Hannah has been busy all day (and I mean ALL DAY) baking and making me brunch, appetizers, and now dinner complete with cake for my birthday (which is actually tomorrow.) She had fresh fruit and homemade banana bread for brunch, loaded tacos for appetizer and now a special roasted chicken and asparagus for dinner. All from weight watchers cookbooks, so at least at I won't be fat AND happy for my birthday! Dave just got home from the wake of a lady here in town that died from breast cancer. She was the town attorney, her husband is the president of the Mattituck Chamber of Commerce and they have 4 children, all 7th grade and younger. Stupid cancer.

Enjoy your week!

♥Kim

Wednesday, March 25, 2009

Hello Friends,
A friend today told me that he was waiting on an update...so here it is!

I hate to come here and always relay bad information. Let me assure you that it is not all bad! Hannah is still her caring, compassionate self. She enjoys doing things for other people and delights in simple things like baking, collecting (everything) and Tod. Are you waiting for the "but?" So...but...she is still having a hard time. Last week she came home from school on Tuesday morning, missed Thursday and most of Friday. She went into school late on Friday, only because I forced her to go in. In working with her, we think this issue is not only neurological, but emotional as well. Hannah is having difficulty with school, emotionally and cognitively. It's hard for her, she can't keep up socially, and she doesn't want to go.

So far this week she went to school on Monday and Tuesday. She did call from the nurse's office both days wanting to come home, but we worked through it. Today she refused to even get out of bed. She said I'm not working on it, I TOLD YOU I DON'T FEEL GOOD, MY STOMACH HURTS. I put her back to bed and she slept until noon.

She hasn't been eating well either. Tonight I made her favorite dinner, and she did eat that, but said she felt sick afterwards. I told her it's from hardly eating anything for the last few days. We're trying and she's trying.

I'll put our Relay for Life information below. Please don't forget your luminaries!!

♥Kim
Help us shed light on the fight…

Whether it’s a parent, a sibling, a friend or a neighbor, we all know someone who has been touched by cancer. Relay For Life is one way of recognizing loved ones who are surviving cancer and remembering those who have lost the battle. At dusk, we quietly remember those whose lives have been touched by cancer. Luminary bags line the track, each bearing the name of a loved one. This ceremony of light symbolizes the hope and courage with which we all continue to fight cancer. For a donation, you can remember someone who lost his or her battle to cancer, or honor someone winning the fight.

In total silence, all of the luminaries are placed and lit around the track and everyone walks the track by the light of the candles. Last year there was a bagpipe player who led us while playing. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer or just something in general. Last year this was such a special part of the Relay for us. What a sight it was to see all of the beautiful bags that we and other friends decorated last year. There were so many luminary bags with Hannah's name on them. She loved it! And to see all of the bags that the girls decorated for our friends, warriors and survivors was wonderful.

So, we are open for sales! In fact, we got our first order today for 5 bags, thanks Grandma K! The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Our Relay is May 30-31st this year. Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

1. Your name and address
   
2. Who is to be honored on the bag (in memorial or in honor of)
   
3. Any photos or artwork you would like included on the bag
   
4. Anything additionally you would like us to include on your bag
   
5. Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. You can also pay via paypal, email address is kprokop@opotnline.net
   

Tuesday, March 17th, 2009

Happy St. Patrick's Day everyone!
It's been almost a week since my last post, I didn't mean for it to be that long. Let's start with swimming-
Hannah passed her swimming test for her silver medal! She did great. She had to do much more than just swim with her clothes on. She had to tread water for what seemed like forever, swim laps, and also save the instructor! Hannah had to throw her the life preserver ring, then pull her into shore. She did great. Who knows what she has to do for her good medal, probably swim the relay by herself (ha ha Mylese). She was so proud of herself!


She has been feeling pretty well since her visit to the doctor last week.Her biggest complaint has been her back. She had riding lessons last Monday and she did A LOT! The instructor said her lesson went very well. However, Hannah left with a sore back. She has been laying on the heating pad for several days now. It seemed to get a big better, but tonight she slid down a couple stairs and now her back hurts again. Sometimes we forget that even though she looks good, she is still very weak and gets hurt doing even minor things.

We took her urine sample in today, so we should have the results next week. Last night we got an email from Alyssa, who is the PA at Schneider's. She is Dr. Altas' assistant, and we see her quite often. We really like her and she is always a big help to us. She emailed last night asking how Hannah was doing. I gave her the good report, but of course today Hannah woke up and said "my stomach hurts" almost immediately. She wouldn't eat breakfast and came home from school at 10:30 am. I told Alyssa that every time I give her a good report, Hannah immediately has a bad day. I am going to email her now to tell her not to email us anymore (ha ha).

Other than that, all is pretty much the same craziness here. Colby's birthday was fun, can't believe she's 12 now. My lyme disease seems to be back and Dave can barely walk now-his hip problem again. Yep, same craziness.



Thanks to everyone who has sent in their orders for luminaries for our Relay for Life team-KidsVsCancer. Hannah is up to 25 luminaries! She has asked me a couple times to start decorating them, so we'll be working on those soon. The Relay for Life leaders have asked us to speak at the opening ceremony this year! What an honor for us. After speaking about it, we have all decided to participate. Colby and Hannah will each speak, and I will speak for Dave and I. This has been a family experience and has affected us all differently.

♥Kim

Wednesday, March 11, 2009

Today Hannah's streak was broken. Before today, she had strung together 7 good days. Today, she called at noon to come home...stomach ache and headache. We had already planned a trip to Dr. Egnor's office, Hannah's neurosurgeon today for a visit anyway. This is the doctor that Hannah had written about last year as the "wonderful Dr. Egnor." He asked to see her after I contacted him last week about the issues she had been having.

He looked at her today and confirmed that he also did not think her issues were related to any swelling or inflammation in the brain. Not only did her MRI not indicate that, but none of his tests on her today did either. He said that from her latest scans, her brain looks "perfect." What we all believe so far is that she does have some type of posterior fossa syndrome, which is most likely causing her vomiting. So, as soon as she started on the new combination of medicines, the vomiting stopped. However, the stomach pain has continued. This is most likely because the stomach pain is NOT a result of the posterior fossa syndrome. It may be something caused from the vomiting that has damaged the stomach lining. So, this will take more time to resolve. It does seem to be getting slowly better (thus the 7 good days.)

Dr. Egnor did speculate that these stomach aches may not be coming from her stomach, due to the location of her pain (lower belly, which is below the stomach.) He wrote a script for a urinary test to check for some type of urinary infection. Wouldn't that be nice if it was that easy? We'll see.

We come home and baked...yes, baked. Hannah made brownies for her class for their pajama party tomorrow. We also made cupcakes for Colby's birthday for her to take to school on Friday. Colby's 12th birthday is Saturday! Hannah has designated herself as party coordinator to do things make the cake, serve the guests drinks, and be the entertainment coordinator.

Hannah is due to take a swimming test tomorrow to earn her next level medal. She has practicing for the last few weeks. This test requires her to swim 6 laps fully clothed, including shoes! She also has to tread water, and do quite a few other things. It's designed so that if the swimmer falls into the water fully clothed, they could survive. I think that's pretty difficult. We'll keep you posted.

I think we're making progress, slowly but surely. As our friend "the hat man"...Mr. and Mrs. Griffin from Boston always say, "Keep on keeping on." That's what we're doing!

♥Kim

Sunday, March 8, 2009

The end of another week, or I guess it's really the beginning of a new one. Hannah rounded out the week much better than how it started. She had had a string of bad days since last week Beginning Wednesday, she did so much better. Although the stomach pain remains, it is so much less. No complaining, no vomiting, no crying, and a full three days of school in a row! She has managed now to string together 5 good days, it's encouraging. Today was a bit iffy for her, she had circles under her eyes (even though she slept until 10:00am.) She didn't eat much, and did say she didn't feel well, even on into the evening. It has been a cycle for her, a string of good days, then a crash and an uphill battle back to even ground.

I spoke with her oncologist this weekend who was encouraged by her progress with the new medicines. He said her issues are definitely multi-faceted in nature, so we have to continue to fix her issues, one at a time. As one is fixed, her body works on the next. We'll see.

We have many things coming up. This weekend is Colby's 12th birthday, spring lacrosse practice starts (Hannah is signed up), Colby's basketball league just started and we're planning for Relay for Life! Our Relay committee has asked us to speak at the event. After speaking with both of the girls, we have decided that our whole family will speak. After all, this has been something that our whole family has gone through. I'm hoping that we will each be able to speak about our experience with cancer from our own perspective. Hannah is a cancer survivor, this will be a success story!

Here our luminary total to date-12!! If you are interested in ordering any, here is the information. Also if you would like to send the money via paypal instead of check or cash, you can send the money to my paypal account at kprokop@optonline. Please email me with your luminary information separately from paypal to ensure I received it.

Thanks again for all of your support!
♥Kim

The luminaries are $10 each. If you are interested in purchasing any, please let us know. We will decorate one for you-I have all the bags here or you are welcome to decorate them yourselves also if you like (I will get you the bags). Our Relay is May 30-31st this year. Let us know if there is anything in particular you would like on your bag and we will decorate it specially for you. If you would like to email any artwork or photos, we can also include those on the bags. We will send you an email with a picture of your bags once they are completed. We'll see if we can get enough to complete one entire circle around the track this year!

Here is what we need if you are purchasing a bag:

• Your name and address
• Who is to be honored on the bag (in memorial or in honor of)
  
• Any photos or artwork you would like included on the bag (via email or mail)
  
• Anything additionally you would like us to include on your bag
  
• Your check made out to American Cancer Society-bags are $10 each, send to us at the address listed on the blog page. Or, send the money via paypal.
  

Tuesday, March 3, 2009

Too tired for a real update, just wanted to let all of you know that it seems this latest reprieve from the stomach pain and nausea for Hannah seems to be over. She left school at noon on Friday, and slept until 6pm. Today she came home again at noon and slept until 5pm. 

Her words this weekend just tugged at my heart..."why does everything bad happen to me?"

Off for more research and to bed :)

♥Kim