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