Saturday, May 10, 2008

RELAY FOR LIFE UPDATE...46 LUMINARIAS!!!!

Our numbers continue to climb and we love that! I had 80 luminarias delivered today, so we have plenty here to work on. That's on the list for tomorrow.

Today...wow, we had a terrific time. We left for NYC in style around 11am in the limo. Jules picked us up and escorted us right to the doorstep of the Lion King! We had about an hour to waste, so we walked over to the M&M factory. They have every color of M&M there, you can't find them like that anywhere else. We all got a mix, plus 2 small gifts and it was $63!!! For M&M's!!! I thought Dave was going to faint, that's NYC for you.

The play-it was incredible. If you live in the area and have never seen it, it's definitely worth the trip. We had very good seats, not too close and not too far. It was mesmerizing, right from the beginning. We all enjoyed it, eating our $63 M&M's. Jules picked us up right outside the theatre and whisked us home. Here are a few pictures from the day: Hannah on the trip there- Hannah's picture from inside the limo- Hannah and Colby at the M&M store- Hannah on the way home in the limo- All of us with the limo-

It was a very fun day for all of us, thanks to a donor from Schneider Children's Hospital. I understand that this man is very large contributor to Schneiders and sends kids and their families to shows about twice a month. I know he does a lot more also. We are very thankful for his generosity and thankful that Childlife asked us to be the family to enjoy the trip.

xoxo Kim

Friday, May 9, 2008

RELAY FOR LIFE UPDATE...41 LUMINARIAS!!!!

Yes, that number is right. We have quite a few others that have expressed an interest also, just waiting for their emails. We've changed our goal to 100, ha ha! We're so thankful to all of you that have purchased a luminaria bag. I had to call and get some more bags, they are being delivered tomorrow.

Hannah has been anxious to get to work on the bags. She started last night. Here she is with her first two bags, Uncle Victor and Aunt Susie. Don't they look great! We're going to work on them this weekend also as a family (yes Dave). We're looking forward to our trip to the Lion King tomorrow in the limo too. I'm sure I'll have lots of pictures to share after that. Besides the lacrosse game on Sunday, that's what we have planned for the weekend. We'll see if Colby is up to the game on Sunday, she was home again today from school sick.

Now for some

FANTASTICALLY EXCITING news:
The total is in for the Pine School Hats on for Cancer fundraiser. They raised a total of $500!

Isn't that awesome? Here is a picture of Colby, Hannah and Anna at Pine School with some posters that Anna's student council made. They should all be so proud of what they accomplished and how they will be helping so many kids with cancer. I know we're so proud of them. A very heartfelt thank you to Anna Reyes and her mom Mylese who were the organizers of the event. Their family has been so involved from the beginning with Hannah. One thing that is generally known and discussed frequently in the pediatric cancer world is the surprising way that friends and family react when your child is diagnosed with cancer. Some people that you have been very good friends with shy away from you and you drift apart. It's not that they don't want to be friends anymore, it's usually that they don't know what to say or how to react. But, on the other side of that coin is how the others react-with so much support and love. People that we didn't know that well before have become some of our most cherished friends now. Mylese is definitely in this category. I went to high school with her, and though we weren't really in the same circles, we knew each other as distant friends. I never spoke to her after school until our 10 year reunion that she and I worked together on (which was a lot of fun, and a long time ago.) She has now become someone so special to us. She and her family always encourage us through the blog. They have sent many things to us, including gifts for Hannah, gift certificates to our family, and lots of love. Now this....we can't put into words how much it means to us for you to have come up with this idea, then implemented it at your school, then also put in your own matching gifts, then challenged our elementary school, and raised $500 for Hannah's Cans for Cancer program. Simply wonderful people, don't you all agree? THANK YOU!!!

Did you catch that part about the challenge for Hannah's school? Yes-another good idea from Anna and her mom. they challenged our school to see if they could match or beat that $500 amount. Anna sent an email to the teacher in charge of the student council at Cutchogue East Elementary school and our school is in! Not only that, but they are doing the fund raiser on June 6th, Hannah's birthday. The way it worked at Pine School was that they sold stickers to students for 50 cents. The students that purchased the stickers could then wear their hat to school on the designated day. Hats are usually prohibited during school, so it's something fun for the kids, while at the same time raising money for other kids. I think our school is selling the tickets for $1.00 each, so they will have to raise at least $1,000 to tie with Pine School. Of course it's all in good fun, our school has over 800 students while Pine only has just about 200. I just loved in Anna's email to our teacher when she said "Good luck, and since the goal is to raise money for kids fighting cancer, we hope you beat us!!!!!!!!!!!!!" Isn't that great? By the way, did I mention that Anna is in 5th grade? Destined for great things in her future, that's for sure.

Cutchogue East has invited Hannah to come and speak at their student council meeting next week to get them fired up and talk to them about the fundraiser. We're looking forward to it! Challenge ON Anna!!!

xoxo Kim

Wednesday, May 7, 2008

RELAY FOR LIFE UPDATE...29 LUMINARIAS!!!!

Can you BELIEVE it? Wow, thank you so much to everyone who has ordered a luminaria. Our total number has almost TRIPLED since yesterday. As I was putting Hannah to bed tonight she said to me "we have to get to work on those bags mom!" Well that's for sure. We plan to start this weekend. I'm sure the girls will love it, since they love any kind of crafting.

The other thing Hannah called me into her room for tonight was school. In particular crying in school. She said that she cries in school every day and she just can't help it. She said she tries not to, but it just starts and then she cries. She said it's embarrassing, especially when it's in front of the whole class. They are only brief crying spells (I was there one day when it happened) because she gets frustrated over something, usually math. Even if she knows something, she doesn't have the confidence in herself to believe she knows it. I told her that we could talk about some strategies tomorrow to help her not to cry in class (like taking a deep breath, or maybe thinking of Tod.) This week was actually a good week for Hannah, she had NO crying on Monday and Tuesday. Today she was upset though, especially when she fell down on the rug in the classroom. Natalie her aide, said she thought Hannah tripped due to her foot. Her foot was hurting a lot today, and she had a significant limp. We go to physical therapy tomorrow again, so we'll have it checked out.

I believe this emotional thing is still from the posterior fossa syndrome that Hannah had following surgery. Not a lot is known about it, but it can cause mutism, big emotional mood swings, and quite a few other things. It has gotten much much better though. After surgery, and during radiation and chemo also, Hannah was extremely emotional and would cry many times a day. I remember talking to Colby about this a few times, trying to explain to her that her sister was emotional at times, even if it wasn't rational. It was difficult to understand why Hannah would be fine one minute, but crying or screaming the next. It is so much better now, although still there.

Colby had her school band and chorus concert tonight, and they were incredible! A big improvement from their fall concert, they all sounded great. I thought Colby was going to be the kid that passed out during the concert tonight (something like that happens every concert). She was very hot and flushed at the beginning of the chorus section, and looked like she was going to faint. She made it though, and all was good.

Signing off for tonight, thanks again for all of your love and support.

xoxo Kim

Tuesday, May 6, 2008

RELAY FOR LIFE UPDATE...10 LUMINARIAS!!!!

Really on a roll now! By the way Sue, when I told Hannah you wanted a luminaria for Laney too, she said she doesn't draw dogs well, so she is going to use a picture we have of Laney and put it on the bag! Pretty funny. I think we're going to have a lot of fun decorating the bags.

Hannah started physical therapy again with Scott (her favorite). Her oncologist thinks she can still make progress with her stability and balance. He also hopes we can work out some of the lower extremity pain Hannah is having on a daily basis. After an evaluation, Scott believes the pain and balance issues she is experiencing is in part due to the way she is walking. She is compensating for her left sided weakness, and other issues by rolling her right foot in a bit. She still does have the ataxia on the left side, again causing some walking and balance issues. So, we're going to work on stretching her out a bit and correcting her gait. We'll be going to Scott two mornings a week, and doing our own set of exercises twice a day.

We do have something exciting to look forward to this weekend. Childlife has chosen Hannah to visit a New York City broadway play of her choice. A limousine will pick us up on Saturday morning and take us to the city to see The Lion King! This is sponsored by a large contributor to Schneiders who contributes a lot to the kids in the hemotology/oncology ward. We chose the date, and Hannah selected the Lion King. It is supposed to be an amazing play, and we are all looking forward to it. I think the kids are looking forward to the limo ride as much as the play! It should be fun and of course we'll let you know all the details.

xoxo Kim

Monday, May 5, 2008

RELAY FOR LIFE UPDATE...3 LUMINARIAS!!!!

Thank you all for your inspiring emails and for joining our luminaria campaign. Please refer to yesterday's post Sunday, May 4th for our Relay for Life Request. I also wanted to add that if you live locally and would like to decorate your own luminaria, that would be great! Please let me know when you email me and I can deliver your luminarias to you!


Yesterday Hannah and Colby participated in their very first piano recital. Their teacher Ann Welcome is a wonderful teacher, and the recital was so well coordinated, all the children were great. Hannah played a duet with her teacher, it was great. I just sat watching her thinking of how far she has come. Seeing her from the back with those little bald spots on her head and that little tail of hair at the bottom was almost more than I could handle, it was so inspiring. We're moving on.

The girls then helped me during the afternoon to take apart our mammoth playset in the backyard to make room for the pool-which is being installed next week WOW! Hannah decided to take some photos....including one of me doubled over in pain after smashing my hand in the same spot 3 times in a row.





xoxo Kim

Sunday, May 4, 2008

Remember when I put out the post about the Relay for Life? I know it was a very strong post because it was a very strong feeling. Our focus is still pediatric cancer. It's not that I don't feel that other cancers are important, they certainly are, but pediatric brain cancer is what we're dealing with right now. It's also severely underfunded. I did learn something new this week-anyone raising money in the Relay for Life can designate where the money goes if they raise at least $10,000! I still would not have done the walk and tried to raise that much money, that's a lot and I don't feel like I can ask people for money for yet another cause. I feel that our mission now with Hannah's Cans for Cancer is where our focus should be when asking people for money and raising the money with our cans.

However, I started thinking about the event itself, it's meaning and it's positive impact for cancer survivors. Hannah is a cancer survivor. I began to think that she may really be inspired by being one of the survivors-she beat cancer. The first walk of the relay is for the survivors. Only survivors are allowed to wear the purple relay shirts, all other participants wear white. The second lap is for survivors and their caregivers. The survivors also attend a pre-relay dinner where they share their stories of inspiration in beating this monster called cancer. Dave and I discussed the idea. We don't want Hannah to always feel like she is "the cancer kid" but frankly, it will always be a part of her life (I hope it's always in the past.) She won't ever forget this part of her life, but we want her to feel proud of what she has accomplished in beating cancer.

We want Hannah to feel good about herself and in a lot of ways now, she isn't. She thinks she is ugly with no hair, that she doesn't want to do cheerleading camp this summer because she won't be able to do it, that she doesn't play any sports anymore, that she is still so wobbly, that she has trouble with schoolwork sometimes and she is stupid. We try every day to build her up, increase her self confidence, but it's going to take some time.

So, with that long explanation we have decided to participate in our Relay for Life event this year.

When I talked to Hannah about participating her comment was "what if my foot hurts and I can't walk?" I told her I would carry her. We will be part of the Maui Mamas team with our friends Pam and Aileen, and others. Pam's mom is also a cancer survivor and they have done relays in the past together! We won't be asking for any direct donations, unless someone works for a large company that wants to donate $10,000 or something close so that we can direct the funds to pediatric cancer research! Ha ha!!

We are not going to campaign for donations. However, we do want to give everyone the chance to buy a luminary bag in honor of Hannah's fight, or in honor of another special person in their life with cancer. These bags have much significance during the relay. Here is a description about the luminaries:

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 by the light of the candles. The luminaries are decorated in support of someone with cancer, or in memory of someone who passed away from cancer. I understand that this is a very special and moving part of the relay. Our family plans to do many in memory of our cancer warrior friends that have lost their battle with cancer-all kids, all that were much too young to die. Pam told me that last year, there were many many luminaries for Hannah (I know we bought quite a few.) I would have loved to have seen that. How inspiring would that be to walk and see so much love and support?

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. Our relay is May 31st, so we have to get moving quickly! Let us know if there is anything in particular you would like on your bag (for Hannah or someone else, or no one in particular) 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!

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
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.

If you could please email your request for luminaries with your information as soon as possible, that would be great. You can send your request directly to me at kprokop@optonline.net. We would like to get started on them as soon as possible since we are a bit late on getting started!

I'll leave you with some photos of luminaries from other Relays, very inspiring!

Thanks for your support....xoxo Kim

Friday, May 2, 2008

We haven't been to clinic since March 27th, so it seemed a bit strange walking in there today. We were in and out in record time and even saw Hannah's oncologist, whom we haven't seen in more than 3 months.

Here are the results from her counts today:

White blood count- 3.97 (up from 2.88 last time) Normal 5.0-13.0
Red blood count-4.12 (up from 3.69 last time) Normal 3.90-5.30
Hemoglobin- 12.9 (up from 12.2 last time) Normal 11.5-16.0
Platelets- 240,000 (up from 237,000 last time) Normal 140-400
ANC- 2410 (up from 1840 last time) Considered at risk under 1500

So it looks like her counts are slowly but surely coming up, although the whites are still not in the normal range. She will her MRI, full cranial and spinal next month (more on that later, ugh). Her doctor suggested cutting her nausea meds by half, every other day, which I will start tomorrow. Hannah still complains about 3-4 days a week of stomach pain and nausea, mostly in the morning, so I hope this strategy works.

We also spoke at length about Hannah's leg issues. She has pain quite a bit when doing any type of weight bearing activity-even walking, but generally no leg pain when sitting or inactive. He thinks it is not neurological, but probably a result of tight muscles and reduced muscle tone. He suggested Hannah begin physical therapy 2-3 times per week, and also was positive about the balance therapy I suggested.

It was nice to see the staff that we miss (and congrats Antonella) but at the same time disheartening to see NOT ONE CHILD we recognized. I say this because all of the patients there today were NEW KIDS WITH CANCER. It was devastating to look around and remember exactly where those families were in their journey. So many kids, and even quite a few babies. It was crowded and very busy today, and Hannah's doctor said they have received many new patients in the last 2 months, cancers of all types. It just shouldn't be so.

But on a positive note, Hannah was able to deliver one of the Nintendo Wii's to Faye at Childlife today, yeh! She has waited a few weeks to deliver it, and was so happy to give it to them today. Here she is pictured with Faye and Rob (our favorite finger stick man.) You rock Rob! She will deliver the other Wii to Spaulding Rehab hospital in 2 weeks when we visit Boston for her follow up neuropsychology exam.

Thanks for checking in with us...and for those of you that are keeping count...this week our beloved Tod chewed the cord to the camcorder. It was plugged into the tv so that we could watch the video of Colby and Hannah at the horse show last weekend, and we left the room. Bad move. How many cords does that make anyway? This dog is crazy!!!!

xoxo Kim