Our First Milestone

We finally reached our first milestone, the end of induction chemotherapy. Cameron was admitted on the 3rd of January to have his g-tube removed and have his final chemotherapy treatment. The g-tube site cleared up remarkably quickly and we had a much happier boy as a result.Whilst we will miss the utility of the tube, the infection risk of keeping it was too high, especially as he goes into transplant.

The final chemotherapy was administered as planned and after Cameron was discharged last Saturday, we slipped out of Scottish Rite for the last time (or so we thought). Last week Cameron seemed in high spirits and was enjoying being home with Mom, Jamie and Grandma.After a routine blood test on Thursday he was scheduled for a transfusion at the outpatient clinic on Friday. In the interim his temperature was on the rise and after his transfusion he was admitted straight from the clinic back into the familiar wards of Scottish Rite. Tests came back positive for RSV, a highly contagious respiratory virus, which Cameron of course caught as his immune system is at it lowest.

We were quickly moved from the cancer ward to a more isolated room on the third floor for the sake of the other kids. So here we sit, burning through yet more episodes of Blues Clues and Olivia interspersed with games and drawing.I guess the tedium is good practice for when we are in isolation after the transplant. Cameron has become a master at navigating through Moms iPad to find his favorite apps, it is amazing to see him develop skills in ways we never dreamed of as kids. He still has a bit to learn about sharing,I'm afraid that he is getting close to figuring out Angry Birds in which case I may never see the iPad again.

James is showing the strain of Cameron being away and his little life being disrupted. It is tough enough as an adult to grasp all that is happening, through the eyes of a child who does not have the capacity to see beyond his immediate situation, everything is completely overwhelming. Whenever Cameron is admitted James sees only one parent for an hour or two each day during the week, we try as much as possible to interact with him on the weekends but even that will decrease as Dad starts to work Saturdays. His anxiety is expressed through crying when we leave the room and more tantrums. Mom had to collect him from school after an hour this week because his teachers could not console him. Thankfully we have Granma staying with us and she has brought a crucial element of stability to his life.We are determined to do everything in our power to maintain as stable and loving environment as possible.

The immediate future is as busy as it is daunting. Over the next few weeks Cameron will have a battery of tests as an outpatient, after which Mom will be as adept at project management as any professional. These must all be completed and submitted for insurance review before he begins the bone marrow transplant which must begin in the next 5 to 7 weeks. Once he is admitted he will have a high dose of chemotherapy designed to destroy any remaining cancer, wait for a period of time and then have the stem cells that were harvested last year reintroduced to his body. The idea is that these cells will make their way to his bones to form bone marrow. What follows will be weeks of recovery in a sterile environment under constant medical care.

We say thank you again to the wonderful nurses, techs, doctors and support staff on the Aflac ward at CHOA Scottish Rite whose vocation is a true calling and who do their work with genuine compassion. Our gratitude also goes to family, friends and neighbors who's practical help and support has not waned and has sustained our family through chemotherapy to this first milestone.

Now that the craziness of the Christmas season has started to subside, I finally feel like I have a few minutes to post a long overdue update on our blog!

Cameron completed his 5th round of chemotherapy the week before Christmas. We were all on tender hooks as to whether he would be well enough to be home on Christmas day, luckily he was and we had a fantastic Christmas! Thanks to two cancer organizations, friends and family members, the boys had so many presents that they weren't even able to open them all on Christmas day! The grandma's joined forces and created a Christmas lunch like no other - we are still trying to find recipes to use up all the left overs. It was fantastic to have both sides of the family here for Christmas!

The day after Christmas, we had to take Cameron in to receive a platelet transfusion, and two days later he needed a red blood cell transfusion, the transfusions seemed to have given Cameron a massive burst of energy and he is as happy and chatty as ever.

As I mentioned in a previous post, Cameron's feeding tube has caused us nothing but problems since it was put in 3 months ago. We finally received a decision from the transplant team, and they have decided that the best thing to do is to remove the tube. Well, that was a monumental waste of time and money! On one hand, I can't wait for it to be removed, it has caused Cameron so much pain and suffering, getting infected every time his counts drop. On the other hand, I wish that it had worked for him, it really would have been the best way to get food into him during his transplants. There are alternative ways to feed him during transplant, they can insert a feeding tube through his nose, he had this type of tube as a baby and even at 2 months old he was able to pull it out himself! The other method is called TPN feeding which is done intravenously. The problem with that is that it puts a lot of strain on his liver, which will already be taking strain from all the chemo that he will receive.  He will be admitted tomorrow to have the surgery to remove the tube and will start his final round of chemotherapy on Wednesday.  I still can't believe that he is almost done with the first phase of his treatment!

Here are a couple of photos of how we keep ourselves entertained in the hospital.