July 17, 2008
"We managed to get everything done that we needed to as far as cleaning on Wednesday night and we came home without a hitch, just exhausted. We are all happy to be back, and facing the reality that there is still much to do here. I am happy to report that we finally have the internet up and running, after 7 years of marriage, we are finally online. I can't believe it, hallelujah. It is truly a source of therapy for me these days, to be able to type out my frustrations. Kole is still responding well to the chemo. I don't think his levels are dropping yet, although he did seem a bit pale today, his energy level was still great. It was too hot, really, to be outside for long, so we stayed in, mostly, and played cars and trains. He ate pretty good and no pukie episodes, he is still on the anti-nausea meds for now. Tomorrow we start the injections again, and the neighbors will get another one of Kole's lung tantrums. The next few days will consist of hanging out and watching for his levels to drop and waiting for Monday, when we go back to Hershey for a vincristine push (outpatient chemo), dressing change, and possible labs. He stays on the antibiotics all weekend as well. I am enjoying his energy while I can, I know it is only a matter of time. Good night, and God bless."
July 22, 2008
"First of all, let me apologize for yet another delay in updates. Since we have been home, I have been fighting off some depression. I know many of you are interested in visiting, and I have been slacking in that respect. Lately I have been wanting to just be alone with Kole, and enjoy him at home, in a simple life, one we don't really see anymore. I hope you understand, and Kole should be well enough by week's end for more visitors. We plan on attending the cut-a-thon Sunday, and can see you there, also. Yesterday we went to HMC for some chemo, blood work, and dressing change/flush. I received some "worse" news while I was there, I say "worse" because it's all bad. Back in June when this mess all started, we consented to having extra biopsy tissue and bone marrow donated to the Children's Oncology Group for further study. The Childrens Oncology Group (COG) is an international research group that consists of more than 240 hospitals in the US, Canada, Australia, New Zealand, and Europe that treat children with cancer. They combine their efforts in an attempt to eradicate pediatric cancer, they share information with each other so that all children get world class care across the board. To put it frankly, you wouldn't want your child with cancer to be seen at a facility that doesn't participate with COG. Hershey does. The COG contacted Hershey recently and confirmed that Kole does not have the embryonal form of rhabdomyosarcoma as we were told. He has the alveolar type, which is a worse prognosis than embryonal. Alveolar rhabdomyosarcoma is more aggressive and harder to treat. It also tends to be more recurrent. This will mean, for us in a nutshell, that Kole just has a steeper mountain to climb. The doctor said that initially, when we thought he had the embryonal, we still chose the most aggressive course of treatment. So we haven't lost anything as far as early treatment. However, this may mean definite radiation. It may also mean having to go through the ifosfamide experience again. Apparently it takes a lot to kill these alveolar cells. But Kole's going to do it, we're sure you wouldn't expect any less from him. The doctor told us about a colleague of hers out at the Mayo Clinic in Minnesota, she specializes in rhabdomyosarcoma, in particular, she is the national chair of the intermediate rhabdomyosarcoma study group, which is exactly where Kole falls. I was excited to hear that her knowledge will be tapped for my son's care. She sounds amazing, I looked her up on the web, and she has published many pertinent findings. I am not ruling out the possibility of a second opinion at this point, I have to see what insurance will cover first, although we have been pleased overall with Kole's care at Hershey. He is, considering, doing wonderfully. There is a doctor out in Philly who also has a rhabdo specialty, so that may be an option. Thanks everyone for the clothes for Kole, he looks soooooo handsome and well dressed. Gotta go, now, Kole needs juice!"
July 24, 2008
"Since Monday's chemo, Kole has been doing well at home. We were a bit concerned that he was coming down with a cold this week as his counts were low, he had a slightly runny nose and sporadic dry cough, but it hasn't amounted to much of anything.We did play it safe though and haven't been out much or had many visitors. Access denied! The last thing we need right now is for him to get sick which could delay the next round of chemo scheduled to begin Monday. I hope and pray we can just stay on track, with this regimen being as aggressive as possible and not miss any more chemo doses. God has seen us through to this point and will continue to., I have no doubts. I can't deny I am worried about this week's chemo, though, it's the week they replace the Ifosfamide (chemo he reacted to) with a new chemo. And it's our "long week". I am sure enjoying the time here at home. I have let some things go around the house occasionally and don't feel guilty at all, it's so nice to just enjoy Kole. I'll end tonight by saying thanks again for the outpouring of love and prayer, thanks for understanding our need for peace and privacy, and God bless"
"I'm working on turning my story into a book to help others.
Amanda has reignited the flame for me. I shoved everything down inside me for
six years.
It's time now. Kole is coming back to life in a new way."
Still working on that wicker basket. Trying to get in the Christmas mood. Today my oldest daughter looked up at me while we were cuddling on the couch and asked me if I was her family. Yes, I am your family and you are my family - this is our family. <3
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