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