Packing, packing and STILL packing. We leave tomorrow morning at 5am for the airport for our Disney trip. In the last couple of days I have set up some really exciting things for our trip, including an ultra special behind the scenes meeting with Shamu, can't wait to share it all with you. Hannah went to bed tonight at 6:45pm, with a headache that she described as "my head is too heavy for my body." I pray that it's nothing, and our trip goes off as planned!
As a follow up to my last post, sorry for all the negative information, but thank you for all of your emails and posts. I don't talk about it that often, it's just always there. I wanted to share with you something a friend sent me (thanks so much) that really helped:
try to look for the joy in things. Everyday, everywhere and in everything in your life.
And finally, wanted to share these videos from 60 minutes with you. I had read about this man, John Kanzius, who created a radio wave machine to kill cancer cells, with NO side effects. You never know. It's very interesting, enjoy.
We won't have internet access until we get back, so we'll update then. Bye until next week!!
♥♥♥ Kim ♥♥♥
Monday, June 23, 2008
The school year is winding down and we are preparing for our Disney trip. Yes, DISNEY! Have I mentioned this before? When Hannah was getting close to the end of treatment, we started talking about what she wanted to do when this nightmare treatment was finally over. She wanted two things-a big party to celebrate and a trip to Disney to swim with the dolphins. We did start planning her BIG party, but it became quickly apparent that this BIG party was going to be BIG bucks. I told her we could do the big party, but we wouldn't be able to go to Disney right away. Disney and the dolphins won over, so we're off! This Saturday we head to Mickey Land for a week. When Hannah found out it would just be our family-well that wouldn't work for her. She invited Grandma and Grandpa and Aunt Susie and Sydney. Everyone said YES, so it will be the 8 of us total.
Wish us luck! Why? Well I haven't talked much about it yet. Everyone looks at our family from the outside-everything looks "normal", everything looks "fine." Now-if you're a cancer parent you know what I'm going to say next. It's not really fine. Hannah's brain just doesn't function the same way it used to-or the same way that other kids' do. She gets unusually emotional over small things, she gets frustrated easily, she cries every day. This has been an issue all year in school, since she is crying in front of her classmates on a regular basis. She said it's embarrassing, but she can't control it. She told me it just comes very quickly and then she cries before she can stop it.
It's not just school either. I was upset after her birthday party last week. It was just confirmation for me that things are and will remain different from now on. Did she have a good time? She did, except for the crying, she said. She was upset when they started to play miniature golf since everyone was going much more quickly than she was. The girls were excited, and were playing and having a good time, but Hannah was left behind. She was crying and throwing her golf club down saying she wanted to quit, no-one would wait for her and asking why she was always the last one done. Oh boy. Thanks to Sascha's mom for helping bring the group together with me. I'm afraid at this rate, Hannah won't have any good friends soon, as she gets older and kids get more and more critical of each other, scared of the differences of others.
Next Hannah got hurt on the big water slide. I don't know what happened, she was going down the slide which was very big, and it seems that when she came down near the end, her body compressed, rather than supporting itself. She was crying and screaming her chest hurt. I had to jump on and go get her. She is still complaining that it hurts, and Dave was wondering if maybe she could have cracked a rib, her sternum? I'm waiting for a response back from her oncologist team regarding their opinion on an xray.
Tonight Hannah happened to see some clay animals that she made last week that I threw away (hey, I can't save everything.) She was so mad, she wouldn't talk to me, and she ran in her room crying. I got them out, but the dog was missing his ears. She spent the next 45 minutes trying to put ears back on, crying the whole time. When she got that done, the tail fell off, so the whole cycle started again.
These are just a couple examples of the issues. Her short term memory is noticeably deteriorating. A couple weeks ago we had been at our regular Friday night gymnastics class. About 3 minutes after we were in the car and driving away Hannah asked me "where were we?" Colby just looked at me with this perplexed look on her face. Hannah is quite good at writing things down now to remember them. That leads to notes all over the house, and getting up at different hours of the night from bed to write something down. Last week after doing her homework she wrote a note that said "tell Mrs. W. that I didn't get the math tonight." Good strategy I guess.
It has been a bit difficult explaining it to Colby. I just tell her that Hannah's brain is different and it doesn't work the way it used to, or the way it should sometimes. This sometimes leads to inequities between responsibilities they have, leniences given to Hannah that aren't given to Colby at times. I try hard to watch this, it's not fair, although sometimes necessary. Hannah had been getting so frustrated and hitting her sister lately. We tried to work out a strategy with Colby that each time Hannah hit her, Colby would write it on Hannah's chore chart. This led to Colby writing the hits down, with Hannah standing next to her, getting more and more upset, finally stabbing Colby in the arm with a pen after Colby wrote down about 10 hits. Obviously this strategy didn't work.
So there is my woe for the evening. Things appear normal on the outside, and that's all good, but on the inside, we're still grieving the loss of a normal life for Hannah with no more crying days, normal friend relationships, fun birhday parties, normal eating, emotional stability, just everyday kids things etc., etc., etc.
♥♥♥ Kim ♥♥♥
Wish us luck! Why? Well I haven't talked much about it yet. Everyone looks at our family from the outside-everything looks "normal", everything looks "fine." Now-if you're a cancer parent you know what I'm going to say next. It's not really fine. Hannah's brain just doesn't function the same way it used to-or the same way that other kids' do. She gets unusually emotional over small things, she gets frustrated easily, she cries every day. This has been an issue all year in school, since she is crying in front of her classmates on a regular basis. She said it's embarrassing, but she can't control it. She told me it just comes very quickly and then she cries before she can stop it.
It's not just school either. I was upset after her birthday party last week. It was just confirmation for me that things are and will remain different from now on. Did she have a good time? She did, except for the crying, she said. She was upset when they started to play miniature golf since everyone was going much more quickly than she was. The girls were excited, and were playing and having a good time, but Hannah was left behind. She was crying and throwing her golf club down saying she wanted to quit, no-one would wait for her and asking why she was always the last one done. Oh boy. Thanks to Sascha's mom for helping bring the group together with me. I'm afraid at this rate, Hannah won't have any good friends soon, as she gets older and kids get more and more critical of each other, scared of the differences of others.
Next Hannah got hurt on the big water slide. I don't know what happened, she was going down the slide which was very big, and it seems that when she came down near the end, her body compressed, rather than supporting itself. She was crying and screaming her chest hurt. I had to jump on and go get her. She is still complaining that it hurts, and Dave was wondering if maybe she could have cracked a rib, her sternum? I'm waiting for a response back from her oncologist team regarding their opinion on an xray.
Tonight Hannah happened to see some clay animals that she made last week that I threw away (hey, I can't save everything.) She was so mad, she wouldn't talk to me, and she ran in her room crying. I got them out, but the dog was missing his ears. She spent the next 45 minutes trying to put ears back on, crying the whole time. When she got that done, the tail fell off, so the whole cycle started again.
These are just a couple examples of the issues. Her short term memory is noticeably deteriorating. A couple weeks ago we had been at our regular Friday night gymnastics class. About 3 minutes after we were in the car and driving away Hannah asked me "where were we?" Colby just looked at me with this perplexed look on her face. Hannah is quite good at writing things down now to remember them. That leads to notes all over the house, and getting up at different hours of the night from bed to write something down. Last week after doing her homework she wrote a note that said "tell Mrs. W. that I didn't get the math tonight." Good strategy I guess.
It has been a bit difficult explaining it to Colby. I just tell her that Hannah's brain is different and it doesn't work the way it used to, or the way it should sometimes. This sometimes leads to inequities between responsibilities they have, leniences given to Hannah that aren't given to Colby at times. I try hard to watch this, it's not fair, although sometimes necessary. Hannah had been getting so frustrated and hitting her sister lately. We tried to work out a strategy with Colby that each time Hannah hit her, Colby would write it on Hannah's chore chart. This led to Colby writing the hits down, with Hannah standing next to her, getting more and more upset, finally stabbing Colby in the arm with a pen after Colby wrote down about 10 hits. Obviously this strategy didn't work.
So there is my woe for the evening. Things appear normal on the outside, and that's all good, but on the inside, we're still grieving the loss of a normal life for Hannah with no more crying days, normal friend relationships, fun birhday parties, normal eating, emotional stability, just everyday kids things etc., etc., etc.
♥♥♥ Kim ♥♥♥
Saturday, June 21, 2008
As I mentioned in my last post, here is Hannah's memoir. They were asked to write about one significant event in their lives, and here is what Hannah chose (I typed the text exactly as she wrote it herself)-
♥♥♥ Kim ♥♥♥
Hannah's Memoir
At first I had an mri and that's how they found out I had a brain tumor. The second I heard, I cried because I couldn't believe it. It was so scary. I went straight to the hospital. When I was in the hospital I was sick. I had Megloblastoma. Which is a kind of cancer. When I got to the hospital I had surgery. At least it didn't hurt. I got anesthesia. Anesthesia is air that makes you go to sleep. When they gave me the anesthesia, I was sort of scared. They put the anesthesia mask on I breathed slowly , I felt sleepy. I shut my eyes for a second. I thought mom was gone, but she wasn't. Then I fell asleep. When I got out of surgery I was sleepy. I opened my eyes, there was mom and dad, but right after, my head started bleeding because they didn't close where they took the tumor out. So they had to put staples in my head. Then they had to find me a room it probably took three hours because it was so busy.
When I got to my room, I saw a lot of nurses. My first day in the hospital was so boring and hard. Then, I had to get IV's and medicine. One of the medicines made my hair fall out. It was called chemotherapy. I wasn't so happy. Then I was allowed to go home. But still, I had to get IV's at home. The unusual thing about having IV's at home is that my mom had to put the needle in and take the needle out.
When I went back into second grade I was nervous because I thought that I was going to be the only kid with short hair, and the only kid wearing a hat. But when I walked in "surprise" they were all wearing hats.TODAY I AM CANCER FREE!!!!!
My hair is growing back. I said I wanted my hair to grow long and not get it cut. Today (Saturday, June 14th) I got my hair trimmed. When I just got done with all my treatment I decided since the hospital had no working games, I bought 3 Wii's because it helps make kids fit and stronger. I decided to raise money for the hospital and kids that are sick and injured. We called it Cans for Cancer because we collect cans, or sometimes people bring cans and bottles to my house and we recycle them, then we give the money to kids who have cancer and to hospitals who need crafts and other games. On June 6th the school did a fundraiser that was called Hats on for Hannah they raised $3,203.53.
♥♥♥ Kim ♥♥♥
Friday, June 20, 2008
A lot to report since my last update. First, the medical stuff. Hannah saw the endocrinologist this week regarding her growth and osteopenia. Frankly, I thought it was a total waste of time. He immediately said to me "she doesn't have osteoepenia." I asked him if he had seen her xrays-NO. I don't think he had even looked at her chart either. I won't go on and on, but he did want her to have a dexa scan-which measures bone density-but he wouldn't give me the prescription for it. He told me that he does his "thinking" on Fridays, but this Friday he had a graduation party, so it would be a bit longer before he would do his "thinking" about Hannah. When I asked him what the treatment would be if it was found that her bone density was low, he said it wouldn't be any different from what he was recommending now-800 mg of calcium per day. He told me that he would get back to me after his "thinking" and he could give me the script for the dexa scan then because "it wasn't going to change anytime soon anyway, so no need to be in a hurry." I was less than satisfied, and will be seeing another endocrinologist at Stony Brook for a second opinion. By the way Paul, I asked the doctor about a pediatric baseline and about the IVA, and he didn't really give me an answer on either-didn't even know what the IVA was!!
Hannah had a country presentation at school this week. Her class' country was Italy and they did two dances. Her is Hannah on stage doing the Tarantella, an Italian dance, and then came out into the crowd to teach us a line dance. The class was great, and after I got over my fear of Hannah being pulled to the ground by the group, I enjoyed it!
Last weekend was also our local strawberry festival. This is a BIG event in our town, and I took the girls-Colby, Tori, Emilie, Abby and Hannah on Friday night. We had a good time, Hannah got hurt on a fun house ride, where she tripped on the stairs. Osteopenia or what?
Hannah had her birthday party today with her friends. We went to a place that had putt putt golfing, a huge waterslide and a water balloon catapult game. Let's see, how do I summarize the party.
They had fun, there was crying, Hannah got hurt on the waterslide-she came down and said her chest hurt, it was like it somehow compressed her chest and hurt her. Oh boy, such mixed feelings. I'll write more later, but I just put it into words right now. I don't think she'll even have another "normal" party.
I have a memoir from Hannah to share with you, but will leave that until next time since this post is so long already!
♥♥♥ Kim ♥♥♥
Hannah had a country presentation at school this week. Her class' country was Italy and they did two dances. Her is Hannah on stage doing the Tarantella, an Italian dance, and then came out into the crowd to teach us a line dance. The class was great, and after I got over my fear of Hannah being pulled to the ground by the group, I enjoyed it!
Last weekend was also our local strawberry festival. This is a BIG event in our town, and I took the girls-Colby, Tori, Emilie, Abby and Hannah on Friday night. We had a good time, Hannah got hurt on a fun house ride, where she tripped on the stairs. Osteopenia or what?
Hannah had her birthday party today with her friends. We went to a place that had putt putt golfing, a huge waterslide and a water balloon catapult game. Let's see, how do I summarize the party.
They had fun, there was crying, Hannah got hurt on the waterslide-she came down and said her chest hurt, it was like it somehow compressed her chest and hurt her. Oh boy, such mixed feelings. I'll write more later, but I just put it into words right now. I don't think she'll even have another "normal" party.
I have a memoir from Hannah to share with you, but will leave that until next time since this post is so long already!
♥♥♥ Kim ♥♥♥
Sunday, June 15, 2008
Hi everyone, an update on the fundraiser, our final figure was $3,203.53!!! I took everything to the bank to count all the change and confirm the number on Friday. I started talking to the girl that was helping me, and she told me that her sister died from a brain tumor when she was 20 years old. Isn't that a coincidence? It's like someone said to me the other day, when you buy a certain car, then you notice that everyone else is driving that car. Now I notice how many other people, normal every day people in our community also have brain tumors. And if they don't, they know someone else who does.
Happy Fathers Day to my hubbie and my dad, both the best in the world. Hope you all had a good weekend. More tomorrow on our weekend, the picture loader is down tonight.
I will leave you with this though-Mimi has finished her second video-Cancer is Hell. Here they both are again. If you thought the first one was a tear jerker, better wait until you have a quiet moment to view the second one. Great job again by Mimi.
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Happy Fathers Day to my hubbie and my dad, both the best in the world. Hope you all had a good weekend. More tomorrow on our weekend, the picture loader is down tonight.
I will leave you with this though-Mimi has finished her second video-Cancer is Hell. Here they both are again. If you thought the first one was a tear jerker, better wait until you have a quiet moment to view the second one. Great job again by Mimi.
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Thursday, June 12, 2008
IT PASSED!! The Caroline Pryce Walker Conquer Childhood Cancer Act Passes 416-0 in U.S. House of Representatives! Now the bill only has to pass the Senate.
Here is the information from Kate Shafer, at CureSearch:
Dear Advocates,
Below you will find the Curesearch press release announcing passage of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This success has been the result of many things but the more than 20,000 letters sent by advocates to members of Congress about childhood cancer and this bill have been a key factor. This brings us all one step closer to enacting a law that will make a critical difference to children with cancer.
Thank you for your letters. Please take a moment to thank your Representatives and continue to contact your Senators to urge passage in the Senate.
FOR IMMEDIATE RELEASE
CureSearch Praises Passage of the "Caroline Pryce Walker Conquer Childhood Cancer Act" in U.S. House of Representatives
Children with Cancer and their Families to Benefit from Landmark Legislation
June 12, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the "Caroline Pryce Walker Conquer Childhood Cancer Act," which promises to significantly increase federal investment into childhood cancer research.
During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.
"For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources," said Pryce, original author of this groundbreaking legislation.
"The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering."
Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.
"I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer," said Van Hollen. "This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90% of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," noted Gregory Reaman, MD, Chair of the Children's Oncology Group. "Only research cures childhood cancer. On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders."
"On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority," said Stacy Pagos Haller, Executive Director, CureSearch.
Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children's Oncology Group (COG), the world's premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
Thank you to everyone who took time to write, phone, and email your senators and congressmen and women. Together we all made a difference that will help further research to find a cure for pediatric cancer. Now that's worth fighting for!!!
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Here is the information from Kate Shafer, at CureSearch:
Dear Advocates,
Below you will find the Curesearch press release announcing passage of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This success has been the result of many things but the more than 20,000 letters sent by advocates to members of Congress about childhood cancer and this bill have been a key factor. This brings us all one step closer to enacting a law that will make a critical difference to children with cancer.
Thank you for your letters. Please take a moment to thank your Representatives and continue to contact your Senators to urge passage in the Senate.
FOR IMMEDIATE RELEASE
CureSearch Praises Passage of the "Caroline Pryce Walker Conquer Childhood Cancer Act" in U.S. House of Representatives
Children with Cancer and their Families to Benefit from Landmark Legislation
June 12, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the "Caroline Pryce Walker Conquer Childhood Cancer Act," which promises to significantly increase federal investment into childhood cancer research.
During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.
"For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources," said Pryce, original author of this groundbreaking legislation.
"The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering."
Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.
"I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer," said Van Hollen. "This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90% of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," noted Gregory Reaman, MD, Chair of the Children's Oncology Group. "Only research cures childhood cancer. On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders."
"On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority," said Stacy Pagos Haller, Executive Director, CureSearch.
Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children's Oncology Group (COG), the world's premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
Thank you to everyone who took time to write, phone, and email your senators and congressmen and women. Together we all made a difference that will help further research to find a cure for pediatric cancer. Now that's worth fighting for!!!
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Wednesday, June 11, 2008
Can you tell I'm getting slower with my postings? I think I'm just getting slower in general :)
An update on the Hats on for Hannah Cutchogue East fundraiser. Total is up to $3195.11 WOW!!! I'm sure the 11 cents came from those kids emptying their pockets, giving all they had with them to help.
Hannah made a thank you poster for the school that she will take in tomorrow to hang in the hallway. She also wrote a thank you letter to the student council for organizing and holding the event that we will give to them tomorrow also. We'll have pictures of all of that soon.
Hannah's clinic visit from Monday went well. Her counts are trending up, very slowly. They tell me this is typical, the counts will continue to trend slowly back into normal ranges on all accounts. She had lost about a pound, but still in the normal range for her weight.
All of the blood work came back, and I have been trying to decipher it since then. This is a bit more than I am used to, I asked for 5 tests, the neurologist asked for a few and they did some initial blood work for the endocrinologist also. Everything appears to be in normal ranges, the one thing that is a bit low is her parathyroid. This affects her growth and could also contribute to her osteopenia. I am researching on my own, and will know more after our appointment with the endo on June 19th.
I also want to share two videos with you. The first is from Mimi, Julian's mom. I'm sure you all remember Julian, who passed away from medullblastoma. His mom has put together this video to honor cancer kids and also raise awareness about children's cancer. Julian's dad Ken will be taking this video to DC to raise awareness at an event there. You may want to view this yourself before allowing your kids to view it, it's quite sad, and meant to shock some people into action. The video includes photos of kids pre-diagnosis, during treatment, and after treatment. This video includes all of the angels. She has another video also for survivors, which Hannah is included in, since she couldn't fit all the photos she was sent in just one video.
The second video to share is from a care pages friend from California, also with cancer. His name is Bailey and he is a riot! His family is taking a trip across the country this summer, stopping in Atlanta and hoping to meet with Paula Deen. This 7 year old is in love with Paula Deen-the chef-isn't that funny? As Peggy (Coleman's mom) says "he should be on tv." If anyone knows Paula, or could help out by bombarding her with emails, please take a minute and help. You can check out Bailey's care page HERE
Here is his video to enjoy also, take a couple minutes and watch this, it's great. His website also explains how we can help by contacting Paula Deen. She is having a contest to nominate a deserving fan to come and meet her on her show. Wouldn't that be great for him? Maybe when they hear he has recurrent cancer with less than 10% survival rate, they will nominate him!
And just a tip from my 11 year old techno daughter-if the video keeps starting and stopping, press the pause button to allow the video to load for a minute, then press play again. This way it won't start and stop.
xoxo Kim
An update on the Hats on for Hannah Cutchogue East fundraiser. Total is up to $3195.11 WOW!!! I'm sure the 11 cents came from those kids emptying their pockets, giving all they had with them to help.
Hannah made a thank you poster for the school that she will take in tomorrow to hang in the hallway. She also wrote a thank you letter to the student council for organizing and holding the event that we will give to them tomorrow also. We'll have pictures of all of that soon.
Hannah's clinic visit from Monday went well. Her counts are trending up, very slowly. They tell me this is typical, the counts will continue to trend slowly back into normal ranges on all accounts. She had lost about a pound, but still in the normal range for her weight.
All of the blood work came back, and I have been trying to decipher it since then. This is a bit more than I am used to, I asked for 5 tests, the neurologist asked for a few and they did some initial blood work for the endocrinologist also. Everything appears to be in normal ranges, the one thing that is a bit low is her parathyroid. This affects her growth and could also contribute to her osteopenia. I am researching on my own, and will know more after our appointment with the endo on June 19th.
I also want to share two videos with you. The first is from Mimi, Julian's mom. I'm sure you all remember Julian, who passed away from medullblastoma. His mom has put together this video to honor cancer kids and also raise awareness about children's cancer. Julian's dad Ken will be taking this video to DC to raise awareness at an event there. You may want to view this yourself before allowing your kids to view it, it's quite sad, and meant to shock some people into action. The video includes photos of kids pre-diagnosis, during treatment, and after treatment. This video includes all of the angels. She has another video also for survivors, which Hannah is included in, since she couldn't fit all the photos she was sent in just one video.
The second video to share is from a care pages friend from California, also with cancer. His name is Bailey and he is a riot! His family is taking a trip across the country this summer, stopping in Atlanta and hoping to meet with Paula Deen. This 7 year old is in love with Paula Deen-the chef-isn't that funny? As Peggy (Coleman's mom) says "he should be on tv." If anyone knows Paula, or could help out by bombarding her with emails, please take a minute and help. You can check out Bailey's care page HERE
Here is his video to enjoy also, take a couple minutes and watch this, it's great. His website also explains how we can help by contacting Paula Deen. She is having a contest to nominate a deserving fan to come and meet her on her show. Wouldn't that be great for him? Maybe when they hear he has recurrent cancer with less than 10% survival rate, they will nominate him!
And just a tip from my 11 year old techno daughter-if the video keeps starting and stopping, press the pause button to allow the video to load for a minute, then press play again. This way it won't start and stop.
xoxo Kim
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