Thursday, May 29, 2008

RELAY FOR LIFE UPDATE...115 LUMINARIAS!!!!

This is so much more than we could have ever guessed or hoped for. We got another order today for another 7 bags...thank you everyone for your support. As the Relay for Life draws closer, I am more and more happy that we decided to do this for Hannah. We had a meeting last night, and just to hear the committee talk about the Relay, how it's so much more than just raising money for research. The theme is "Celebrate, Remember, Fight Back." They celebrate the survivors, remember those who have lost their battle with cancer, and fight back by raising money to try to find a cure.

Survivors are honestly celebrated and honored during the Relay. This is exactly what I was hoping for for Hannah. I wanted to do the Relay to show her that she is not alone in this battle, and that she is a winner. She seems discouraged lately by everything. In the neurologist's office this week out of the blue she asked me "when am I going to be able to do things like other kids?" When I asked her "like what", she answered "run." I reminded her that she ran the bases with her sister's softball team last week, but she still seemed discouraged. I think that since her feet hurt again, she is really bothered because she can't run now, and she thinks about it often. This morning she cried because her feet hurt again and she wouldn't be able to keep up with the class today. What do you say to that? "It doesn't matter" or "that's what Mrs. W is there for, it's ok." But even if it doesn't matter, it does to her, and it's bothering her. When I asked her what else she wants to do that she can't, she said "I don't want to talk about it anymore, just act like I didn't say anything."

She wanted to play soccer this summer, but now she is wavering on that, I think because her feet hurt and she is afraid she won't be able to play normally. Since our summer break is quickly approaching, people are signing their kids up for camps, and a few people have asked her what she is doing this summer. That just draws attention to it, and she has to think about it. I have tried to talk to her to suggest things for the summer, but she really doesn't have a desire to do something in particular, she just knows that she will be left out of what other kids are doing. At least we have the pool, so that will be a very big welcome distraction. I have a feeling I'll be wet most of the summer. Once that heater is hooked up, that's the end of dry land for me. I don't expect to get much of anything done this summer.


One other story I want to share with you. I don't think I have mentioned here before that when Hannah had her initial surgery at Stony Brook, she had her beloved lambie with her. This was a special lamb to her, although she didn't sleep with it every night, she always knew it was around. It was very loved, kind of dirty, tag ripped and had a hole in it. Well somehow we lost it at the hospital. My mom even called the laundry at the hospital to see if they found him, but it was hopeless. Hannah mentioned lambie a few times since then, but over the past 6 months or so, she has asked for him increasingly. She would cry and cry over it, asking me nearly every day where lambie was. Following Coleman's mom's lead, I went on ebay, and can you believe that I found lambie? The same exact lambie, brand new. So I ordered it and told Hannah that lambie had been sent to the animal repair hospital when she went to the hospital. Remember in the Wizard of Oz when they all went to get shined up and restuffed and spiffed up? Well that's what I told Hannah about lambie. So when he arrived, along with a note about where he had been, and that he missed her, she was a bit skeptical, but the happiness washed right over that. Actually her words were "Grandma sent him to be fixed and he is!" So, Grandma, how did you manage that one? I told her that lambie was as good as new, and that he must have had a stem cell transplant to look this good! I don't think she cares, she sleeps with him now every night and makes sure he doesn't leave her bed.

xoxo Kim

Tuesday, May 28, 2008

RELAY FOR LIFE UPDATE...108 LUMINARIAS!!!!

Uncle Mike is right, make it 108. I heard that Hannah is also getting another one tomorrow, so we'll let you know.

Well I spoke too soon. Hannah woke up this morning, and on our way into physical therapy before school she announced that her feet hurt and she was limping. So, just like that it's back. It's not as bad before, but her left foot is hurting. We met today with the neurologist at Schneider's who really didn't have any concrete ideas. This is just a difficult issue to diagnose (after a brain tumor you would think anything is easier.) She did say that Hannah should continue with therapy, perhaps that was what gave her the 2 week reprive from the pain. She doesn't think it's neuropathy and did not recommend any medication, so that's good. She did point out though that Hannah still has nystagmus (her eyes jump at the far ends of her peripheral vision.) This surprised me, since I thought that was gone since Boston, but it was quite obvious when they showed me. It doesn't affect her vision or the function of her eyes, and is a product of the surgery. Nothing needs to be done about.





I wanted to share a few individuals luminarias with you that the girls have completed. I really like them all, and we will be sending everyone who ordered a bag a picture of their decorated bag. I'll share more individual bags here too, can only get so many pictures on at one time.I can't wait to see them all lit up around the track.

The bags with Hannah's name on them Hannah decorated from Grandma and Grandpa. The bags with all the little pictures on it are all of Hannah's favorite things (isn't that cute Karenann?), the Boston Bags are from our favorite hat man in Boston, there is Colby with her "Cancer Fears Me" bag, and the bags for Coleman and Hannah that Hannah also made (from the Reyes family.) Just wait until you see the ones tomorrow, very interesting.

xoxo Kim

Monday, May 27, 2008

RELAY FOR LIFE UPDATE...105 LUMINARIAS!!!!

Our count is up over 100 now, who could have predicted that? Incredible, thank you everyone. We have worked diligently this weekend, and all of our bags are completed! I will share a few of my favorites tomorrow. If you still would like to order a bag, let us know, there is still time!!



So the filter and the heater are not yet installed, but the kids...and the dog...have been in it! It all started on Sunday when I looked outside and said "that's weird, the pool is wavy like the bay!" I didn't think that much of it, but when I went back out and couldn't find Riley, I looked and there he was IN THE POOL! He was shaking and looked panicked and scared and was treading water. I don't know how long he had been in there, it could have been as much as 20 minutes. After I stripped my clothes off I realized I wouldn't be able to get him out of the pool from inside the pool, so we called Dave and he came and scooped him out of the pool. Scary!! Afterwards the girls figured that if Riley could get in the pool so could they. It was freezing! Colby braved the water first, then Hannah. They stayed on their floats (or tried to for the most part) screaming and kicking and laughing around the pool. And did I mention what happens when you leave the floats outside alone with the dogs?

Tomorrow Hannah goes in to the neurologist to check on the foot pain she was having. Since it's no longer there, I don't know how much they will do, but we'll let you know.

xoxo Kim

Sunday, May 25, 2008

RELAY FOR LIFE UPDATE...100 LUMINARIAS!!!!

Yes, it's 100 WOW!!!! Thank you Josephine and Sarah who called today and wanted to bump us up to 100. We have been working working working this weekend on the bags, and we're done with all 100!!! Woohoo!! I am working on pictures to post here. It is really going to be wonderful walking around that track looking at all the luminarias from all of you. THANK YOU!

Tonight we have a special prayer request for our very good friend Alec. Alec has really been having a difficult time lately, with another brain surgery, shunt problems, now pneumonia and necrosis (scar tissue) in the brain from radiation which is pressing against his brain stem. He was in the ICU at Stony Brook and now they have transferred to Schneiders. Here is a picture of Alec on his smart cycle with his mom Amy. It's a therapeutic interactive cycle that hooks into the tv. I hope he'll have lots of fun on it! Please keep him in your thoughts and prayers. He really needs a break.

We are still waiting for our pool to be finished. The filter and skimmer need to be installed, all the dirt around has to be backfilled and put back into place, and the heater has to be installed. But, that didn't stop several in our family from trying out the water. Lots more on this tomorrow, I'm too tired to go on!!!!!!

xoxo Kim

Tuesday, May 20, 2008

RELAY FOR LIFE UPDATE...91 LUMINARIAS!!!!

Yes, we went from my last update of 69 luminarias to 91, WOW!!!! We got 10 new orders just today! And then as I was typing up this update, I got an order from Hannah's Girl Scout Troop for 9 more bags! That will bring tears to your eyes! Thanks so much again everyone. I know it's really going to be a special time for Hannah and our family to walk around the track on Relay day and see all the bags that the girls decorated, and all the bags with Hannah's name on them also. I better start practicing my stone face for that night, I have a feeling it's going to be very moving.

Boston...it was two things-Fun and Tiring! We went right to the aquarium when we arrived on Saturday, just like old times (well, sort of). It was fun, Hannah was very excited, and it was strange being there without Hannah in a wheelchair. I remembered how hard it was for her to see some of the things and how it was more difficult to get around. We had a good time, then went over to Legal Seafood for lunch. Again, different from last time, not having to worry so much about Hannah eating. We used to go there and she would eat 2 raviolis, this time she ate some salad, a roll and half of her chicken fingers.



We then headed to our hotel to check in for some serious swimming. We were in the pool and hot tub for about 2 hours, and it probably would have been more had I not pulled her out. Hannah met another girl and boy in the pool that were visiting from Chicago. Very nice family, very friendly (and outgoing) kids. The little girl become pretty comfortable with Hannah, was touching her head, and asked Hannah what happened to her hair. We told her and she said "Cancer Survivor, Well better to be a cancer survivor than a cancer deader" The frankness of a seven year old, Hannah just took it in stride. We said YES, much better!


Hannah was pretty tired after the travel and the aquarium and the swimming. After dinner and a movie in our room, she was beat and started to have a stuffy nose. She went to bed, but woke up at 12:00, 1:00 and 3:00 with a stuffy nose, crying. The night before her big "test", I was thinking oh no. It was reminiscent of the days in the hospital waking up hour after hour. But she rallied and was ready to go in the morning. The neruopsychology test is a very draining and long test for anyone, especially an 8 year old. She came out after 2 hours for a break and she was crying. She was tired, frustrated and just wanted to stop. She said she was having trouble with some of the test. But, we talked and took a break and she went back in. After a short break for lunch, she went in again. The test in total took about 5 hours for her to complete. The doctor did express her concern over Hannah's processing speed. It was evident that this was an issue for Hannah. This is one of the more common side effects of full brain radiation-slower processing time. It takes about 4 weeks to receive the full report, so we'll be waiting for that. But it is what it is and can't be changed, it' all ok. We can use the report to help Hannah with any special accommodations in school, so that will be good.

After the test we headed over to the proton center and saw all of our favorite people-Rachel, Ron, Jim, Paul. It was so great I totally forgot to take a picture :( We then headed to Spaulding, but most of our friends were out. We did get to see Lynette and Renee and a few others, but Hannah was really looking forward to seeing Mary and Audrey who both weren't there :( We did drop off the Wii though, and got a great email from Audrey...they loved it! It was very strange for me to go back to these places as a non-patient now. It really made me feel happy and sick to my stomach at the same time. Odd, I know.

There was some excitement at Massachusetts General Hospital. When we arrived we saw camera crews packing the place. Senator Ted Kennedy had been brought in by helicopter after having a seizure. It was announced today that he has a malignant brain tumor, a glioma-but they have not clarified whether it is GBM-glioblastoma multiforme, which is the most common in adults his age, but also the most serious. It's a stage 4 grade cancer, nearly alway fatal, and quickly too. As another cancer mom said to me tonight, well the good thing is it will bring more light to the brain tumor fight. That's how you look at it, if you're on this side.

I have more exciting news to post tomorrow about the Cans for Cancer school fundraiser AND the new pool that's now a real pool,

xoxo Kim

Friday, May 16, 2008

RELAY FOR LIFE UPDATE...69 LUMINARIAS!!!!

Yes, that number is correct! When I got the mail today there were so many other envelopes with orders for luminarias that I hadn't yet been notified of...now THAT'S fun!!! Thank you everyone!! There is still plenty of time left to order one, we are almost to that 100 mark Christine!!



Well our pool now is truly a pool! They finished today around lunchtime, everything went smoothly. It looks awesome...and BIG! They had to dig out the yard quite a bit to get it level, so our above ground pool is almost like an inground pool on the one side. I wonder who will be the first one in...Hannah or Tod? I can see him running full speed and jumping in. We need to keep the dogs out of the pool to protect the liner, so hopefully that doesn't happen.

I noticed when they delivered the pool that the box with the liner inside read "Coral Sea Liner" since I knew we had ordered "Indigo liner" I was hoping Hannah wouldn't notice when she got home from school (sorry Amy). She took one step out of the backdoor and said "that liner is ugly, it's not the right one." So much for that. After a bit of quick thinking and talking and a few tears, she was ok with it.

The pool now has about 2 inches of water in it. It's raining pretty hard, so I guess that adds to it too! My friend Leslie had arranged for the fire department to come over with a tanker truck and fill the pool, they we due to come here last night. Well, since it took 9hours to dig the hole, that didn't happen. As it turned out, we needed to fill it very slowly today, due to cold weather, to help slowly stretch the liner. Thanks Leslie, that was a great set up, now go have that BABY!

On a sad note, another child lost his battle with cancer today. Little John Eric died this morning. He had neuroblastoma, similar but not exactly the same as Hannah's medulloblastoma. He was only 2 years old. Just not right. Please keep John Eric and his family in your prayers.

Hannah and I travel to Boston on Sunday. On Monday morning, she will undergo a 4 hour neuropsychology test. We wanted to have her tested with the same psychologist that performed the first exam, so they exactly comparable from year to year. This test will determine Hannah's cognitive, motor, behavioral, language, and executive functioning. The test will provide valuable data that the school can use to help Hannah and make any accomodations she might need.

After the test, we plan to visit Spaulding Rehab center and the Proton Center, where we spent so much time last year, and became friends with many of the people there. We can't wait to visit, that will be the fun part of the trip!

Have a good weekend everyone,

xoxo Kim

Thursday, May 15, 2008

RELAY FOR LIFE UPDATE...60 LUMINARIAS!!!!

Up by another one today! We have about another 40 available, so if you're thinking of getting in on the luminaria fun, just don't get more than 40! Ha ha!

So today was the big pool day! The guys arrived about 7:15am and got right to work. And work. And work. It took them about 9 hours just to dig out the area and get it leveled. Usually they are done with the whole project within that amount of time. They were a really great group though, no complaining (at least not in front of us). They were all considerate and very nice, especially to Hannah. Hannah came in and out, taking photos during the day. Then she decided she wanted to bake them cupcakes, so we did that too, complete with sprinkles. By 8pm, they decided to call it a night. They are planning on returning tomorrow, as long as it doesn't rain, so we're doing the no rain dance! Hannah announced that she should stay home from school tomorrow also, but that's not in the cards.

Here are some pictures from the day...the long pool day!



xoxo Kim

Wednesday, May 14, 2008

RELAY FOR LIFE UPDATE...59 LUMINARIAS!!!!

Our total is still on the rise. Thanks again to everyone for your participation. Here is a picture of Colby and Hannah working on the luminarias last weekend. Hannah is really having a good time making these bags. I took Colby over for her NYSSMA event tonight at the high school and Hannah was asking where the bags were so that she could work on some while we were gone. There is still time to sign on for a luminaria, just let us know!

So many exciting things happening right now. Make A Wish will be installing the pool tomorrow. I have a feeling that Hannah is going to feeling too ill to go to school, in fact we already told them she would out tomorrow! She is looking forward to taking tons of pictures of all the work tomorrow during all of the action. She already started taking some when they came to deliver the pool today. Here are Colby and Hannah (on top of the heater box) watching the men unload everything off the truck. It's hard to believe that this pool will be created from only these boxes! Our local newspaper is coming by tomorrow with a photographer also! They want to do a story on Make A Wish, and we hope to help them get the word out that Make A Wish is available to any child with a life threatening illness. When Make A Wish first contacted us quite a while ago, it took me several weeks to call them back because I thought Make A Wish was only for children with terminal illnesses, so they had the wrong family! That wasn't even a thought I was entertaining. Well after some prompting from our social worker, I did call them back and they explained to me that it was no longer just for children with terminal illness, but for any child with something that was a life threatening illness.. and this was Hannah.

Now on to something else so exciting-the Hats on for Cancer fundraiser. Cutchogue East Elementary is up for the challenge Anna! Hannah, Colby and I met with the student council this afternoon to discuss the idea, and the kids (and teachers) were very upbeat and excited about it. Just mention CHALLENGE and they're off and running. We are running it like Pine School, selling tickets for 2 days (our school actually bought hats-birthday hats, since the fundraiser will take place on Hannah's birthday) to allow the kids to wear hats in school on June 6th. I was so impressed that the teachers already had everything organized. They created an informational memo, prepared envelopes for each classroom to be able to collect the money, and had everything in order. Wow! I guess that's what teachers do so well. The student council will be making posters and promoting the event in their classrooms. I understand they have some other things planned as well, so we look forward to hearing more as we get closer.

All of the money will go directly to help kids struggling with cancer-like the latest gift of music we sent to help Kat- CLICK HERE to read her story. She has just been through so much, first the cancer, then the mass on her liver that continues to make her so sick. She could really use a break, so we sent her a little pick-me-up. Something about her just struck me, and I have been following her for quite a while.

Have a good evening and expect lots more from us tomorrow!

xoxo Kim

Monday, May 12, 2008

RELAY FOR LIFE UPDATE...58 LUMINARIAS!!!!

Our count is up again, thanks so much to everyone who has requested a luminaria. It's still not too late if you would like to get in on the fun.

Just a brief update tonight because it's way too late to be doing this. Hannah continued to experience more leg and foot pain today. I did get a recommendation for a pediatric orthopedist out here by us that I will be contacting tomorrow. I also got a recommendation for two other docs in the city, and we may be going to them also for another opinion. The pain is pretty significant for her now, she walks like a 100 year old woman and cries at night since it hurts. We'll keep working on it until we get something figured out.

Did I mention Hannah's Make A Wish pool is going in THIS WEEK? Hannah is just so excited (both from getting the pool and being allowed to stay home from school this Thursday when they put it in.) I will write more later on this whole experience, it's been amazing so far with so many acts of kindness coming our way.

xoxo Kim

Sunday, May 11, 2008

RELAY FOR LIFE UPDATE...50 LUMINARIAS!!!!

We now have 50...it's wonderful! Erin and her mom came over today to make raise our count to 50! We also still have quite a few people who have asked for a luminaria, but not finalized yet, so we're hoping that number will still go a bit higher.

HAPPY MOTHER'S DAY MOM
AND ALL THE MOMS OUT THERE
I want to share a story with you for mother's day. It's not a mom story, but still a story of love involving a sister. Unbeknownst to me, my sister Sue wrote to Build a Bear entering a contest on Hannah's behalf called Huggable Heroes. This is an annual contest to honor kids doing great things in their community. Last year 10 kids were honored with the Huggable Hero award and won $10,000 in scholarship money and money for their charity. All of the kids' stories are amazing in their own ways, raising money for everything from cancer to homeless people to poverty to kids in foster care. Sue submitted Hannah for her work with Hannah's Cans for Cancer. I was so honored that she would submit Hannah. She didn't tell me about it until afterwards. Hannah was honored with an honorable mention, which is fantastic.

It's things like this that really warms your heart through this journey. Here is her story for Hannah:

I am writing to you about my niece, Hannah Prokop. She was diagnosed with a brain tumor on January 31, 2007. She has since undergone surgery, radiation, and chemotherapy. Currently she is doing well be will have to monitored forever for this condition.

I wanted to tell you about what she has done in her community and for the hospital where she had her surgery. She started last spring between radiation and chemotherapy and had a bake sale. She was able to raise $400.00 at the sale and donated the entire amount to an organization that is called Smiles for Scott Foundation. This little boy died of the same disease as my niece. Every Friday the family and volunteers for the organization take candy to all the kids. They can have as much as they want and my niece wanted to make sure that they would not run out. They gave her a plaque and certificate for her donation.

The next project that she under took was to have people drop off cans and bottles at her home to raise money for the hospital at Stony Brook New York for the toy room because a lot of the toys are broken or missing pieces. She has raised over $1000.00 and has been on a few shopping trips to by the toys and take it to the hospital.

She has done all of this while fighting this horrible disease. She is only 8 years old and has shown more strength than a lot of people that I know. Hannah also has a blog site that you can read all about her and her journey. The site is hannapro.blogspot.com. Thank you for considering her for your award.

I love you Sue. xoxo Kim

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