Phase 2

For multiple reasons this last week has felt basically normal.  Chan is only on one prescribed medication a day now, which, compared to the 4-6 that he was previously on, feels like nothing.  He is active: playing, laughing, talking, and fighting just like normal.  The only reason you can tell he is sick is because of his weight gain.  Another reason it has felt basically normal is because we have a visitor!!  Grandma Rani is here for a few weeks which has lifted my burdens immensely and helped with all daily tasks as well as going above and beyond with babysitting so that Kindt and I can get out of the house and accomplish other things that need to be done.  Having another person here is SOOOO nice!!  Chan has also gotten over the massive cravings and consumption of food.  He is also not up the 4-5 times a night to use the bathroom like he was when on the steroids.  This has helped Kindt and I get a little more sleep and feel more normal and capable as well, though for some reason I am always still exhausted, which probably has a lot to do with the baby growing inside me!  These are all reasons that there haven't been any updates because we have been super busy, and just enjoying having Chan's crazy self back. 

We are now on second phase of treatment (called Consolidation) which also means Chan is in remission!  The cancer is no longer detectable in his bone marrow and blood which is great news.  Though, if they don't continue treatment for the next 2 and a half years the cancer will come back full force.  So, while the cancer is mostly gone, Chan will still have a lot more treatments and medications which come with chances of side-effects, toxicity, and so much more.  In Consolidation, Chan will have 6 planned hospital stays of 3-4 days a piece.  The reason he has to be in the hospital is because they have to do an IV drip with one of the chemo drugs that's administered over 24 hours, and then additional medication is given over the following 2 days.  Our first hospital stay is scheduled for this Thurs - Sunday.  Because of this, we celebrated Easter a week early.  As long as Chan's blood counts come back within range on Wed (local clinic will draw blood), we are set to go up to the hospital for the weekend.  He will get his first round of this new treatment probably starting Thursday evening. 

AFCH has never had this new protocol for treatment, so we are all kind of learning about it together.  To give a little more background, we are on a clinical trial for Leukemia, and the branch of the study we are on was just introduced nationally back in August and has only recently begun in Madison.  "Clinical Trial" may sound a bit scary and experimental, but the trial he is on is based on previous, more experimental studies.  Clinical trials are categorized based on how "experimental" in nature they are, with a Phase 1 trial being the most experimental and a Phase 3 trial being the least.  Chan is on a Phase 3 trial, which again means the trial has gone through previous testing and has been proven to work and be effective.  Now they are just trying to see if this treatment therapy is "better" (meaning less toxic but same survival rate) then others by comparing them side by side.  Children in the Low Risk category of the study (like Chan) are randomly assigned to one of two branches (actually called Arms), and we were chosen to be on a treatment arm that is very different from previous protocols the hospital has had. 

We are very excited about being on this arm for multiple reasons.  First, even though there are hospital stays (the other had none) the treatment is much less toxic.  So the hope is that the long term possible side effects of the treatment will be lessened.  Second, if all goes according to the time-line, then Chan moves into the next and final phase of treatment (called Maintenance; visits are every 2-3 months) before the baby is born.  They've been sure to warn us that things never go according to the time-line, because if Chan gets sick or his counts aren't within the proper numbers everything gets pushed back.  But at least it will only be a little bit of time with a newborn and Chan in Consolidation.  And third, the treatment will only be for 2 1/2 years as opposed to 3 1/2 years.  We are very optimistic and eager to get things going so that we can get through consolidation as quickly as possible!!

And this post wouldn't be complete without another huge THANK YOU to everyone out there supporting us.  I know that I could call any of you at any time and you would jump up and do anything you could to help us.  I love the sweet letters and cards we have gotten in the mail, and smile every time I look back at the letters and cards we've received.  I do want to apologize to anyone who I have not responded to, I tend to do a quick email check and read the messages and then try to remember to respond later and sometimes forget.  I am sorry if this has happened, message me again and hopefully I will be able to be better at responding :) 

I hope that you all had a great week like we did!!