Update and Conquer Childhood Cancer Act

Ryan has been enjoying his time out of the hospital. He wasn’t feeling very well at the beginning of the week but is improving as each day goes by. He is in the day clinic at Children’s today to get his standard labwork done.

Ryan wanted to make sure to thank you for all of the fundraising support over the last several months. Because of you, he was able to order his rehab treadmill and looks forward to getting it in about a week. We'll be sure to get a picture of Ryan on it to share with you all.

When we entered this new life in April, I began to do a lot of research on cancer, especially childhood cancers. It is devastating and there are not enough words to describe the trials that these children and their families face day in and day out. I found some statistics on Tyler Alfriend’s blog which is written by his dad, Kyle. Tyler has also been fighting this battle and is now is remission.

• Less than 3% of all cancer funding is granted to pediatric cancers.
• The first ever tissue bank to study teen cancers is just now in the planning stages.
• In the past 25 years only one new drug has been developed for pediatric cancer.
• Teens and young adults (age 15-22) is the only age group where cancer survival rates are decreasing, and have for the past 25 years.
• The cause of most childhood cancers is still unknown.
• Due to the lack of new drugs, most pediatric cancer treatments are little more than mega doses of adult chemo treatments.

The Conquer Childhood Cancer Act was just approved by the House and was renamed The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. Caroline, the daughter of Representative Deborah Pryce, lost her battle with cancer at age 9. The bill authorizes $30 million to go towards childhood cancer research. This is the amount that we spend every 2 1/2 hours on the war in Iraq. This bill will go to the Senate later this summer. But there are many Senators that are either opposing it or blocking it. Why??? That is my big question. If it is yours too, please tell Washington how you feel here:

http://capwiz.com/curesearch/home/

And very important, please sign this petition:
http://www.thepetitionsite.com/1/CureChildhoodCancer

You can read through the comments of so many others impacted by this terrible disease and tell everyone you know to go and sign this petition as well. Every little bit helps. If you know me, you know that I’m not a very political person at all. But, this is something that is so important and this is a chance for us to do our part to try and stop this nightmare from happening to so many other children and families.

~Amy

Ryan is home again

Ryan left the hospital a little while ago and is now back home. He is looking forward to staying at home until his next chemo treatment in about 1 1/2 weeks. Ryan hasn't been feeling very well the last day or so because of the effects of the chemo. And, he hasn't been able to sleep comfortably at all the last few nights. So, I'm hoping being at home again will get him back into shape soon enough. Now that his port is in place, he no longer has the pic lines in his arm which is giving him a lot more freedom. Please pray that Ryan will begin to feel better very soon and that he'll be able to enjoy his time at home. And of course, that he'll be able to sleep soundly until noon again :-)

God Bless,
Aunt Amy

Thursday update

Nothing much new to report...Ryan had a pretty good day today after his 3rd day of chemo. He's planning on watching Columbus' Red, White and Boom fireworks tonight from a hallway off of J-5 that has all windows and faces where the fireworks will be displayed in the sky. All of the patients on J-5 can view the fireworks in this hallway and have their own celebration with their family.

Have a Happy 4th!
~Amy

Wednesday update & Biopsy results

First of all, the bone marrow biopsy results came back late today. The doctor said that they were negative and that his bone marrow didn't show any signs of cancer. I wanted to jump through the roof when I heard him say that. Another answer to prayer for sure. I keep saying one step at a time...One by one each spot in Ryan's body will be fully healed and cured of cancer. I am certain of it. It seems like a long road ahead now because of the aggressive course of treatment. But, it will be all worth it in the end when Ryan is fully in remission.

I was blessed to be able to spend the entire day with Ryan [thank you again sooo much Grandma and Grandpa for watching the boys for me]. Ryan had a great day and slept well last night. He ate very well once again. Like I mentioned before, he's had a huge appetite. So much so, he's gained 8 pounds since he was admitted to the hospital on Saturday night! His second day of chemo was completed this afternoon...only 3 more days to go. So far, he's been doing pretty well with it. Ryan was walking some laps around the floor today to get in his physical therapy. He had made so much progress with his physical therapy while he was home that he's not going to let being in the hospital stop him from continuing to build strength in his legs :-) He was doing great and walking at a pretty good pace.

Tyler Alfriend and his mom, Kathy, stopped by to meet Ryan this afternoon. It was so wonderful to meet them and hear Ryan and Tyler compare their stories of being in the hospital and of their experiences with their chemotherapy. Tyler has fought his cancer into remission. Praise God for that. You can read more about Tyler's journey here. Please keep Tyler and his family in your prayers as well as all of the kids [and adults] that are currently on J5.

Ryan is looking forward to Sunday when this round of chemo will be over and he'll be home. The plan is still for him to be in the hospital until Sunday afternoon. Next week will be a chemo-free week.

God Bless,
Aunt Amy

Ryan's Surgery

Ryan did have his surgery yesterday morning at 8am. And, it went very well with no problems and he was back in his room by early afternoon. Once he was out of the anesthesia, he really didn't experience any side effects which is great news. He was doing very well yesterday and had a huge appetite. It sounds like they couldn't give him enough food to eat :-)

Ryan now has a port which will make things easier for administering the chemo and any IVs. Ryan was having some pain in his hip where the biopsy was done and soreness in his chest/right shoulder area where the port was put in. But it could, for the most part, be controlled with pain medications. They pulled Ryan's pic lines out with no problems and with very little pain.

Ryan had a good night and slept well. He is preparing for his five-day chemo regimen which will begin sometime today. Please pray for his ability to withstand the effects of this type of chemo. We are hopeful that the second time around will be easier for him.

Thank you so much for your prayers before, during and after his surgery. Ryan's attitude has been very good, especially considering everything he has gone through. He is expected to be in the hospital through Sunday. The biopsy results should come back later today or tomorrow. I will update more when I find out.

Thank you again for everything.

God Bless,
Amy

Update Sun. evening

I don't have much further information from earlier. But, I do know that Ryan received a unit of blood this afternoon. Ryan's blood counts were a little low today. He needs to be at a 10 to continue with the surgery tomorrow and he was at a 7.9 today. So, they were going to evaluate tonight whether or not he'd require another unit of blood.

Ryan is apprehensive so please pray for his peace of mind as they [hopefully] take him into surgery for his port and do the biopsy.

Thank you and God Bless,
Amy

Back at Children's Hospital

Ryan was re-admitted to Children's last night because he spiked a fever. They believe it is a bladder infection. Please pray that the infection can be cleared and his fever reduced. I'm not sure yet but I think it will impact whether Ryan has his surgery and biopsy tomorrow if they cannot get the infection under control. I'll post more details when I know.

Thank you again for your continual prayers,
Amy