And So We Begin

Finally, Catherine's counts were high enough so that we could start the dreaded last phase before long term maintenance. It seems the 3 weeks off of everything worked. Catherine was able to enjoy some down time and be her old active self, she regained all the weight she lost and her mouth sores fully healed. She rode her big wheel and went for walks everynight, we hit the playground, we even went to an outdoor production of Lilly's Purple Plastic Purse. It was so great to see her like that and at the same time a little bittersweet knowing that it would soon come to an end. And when Monday rolled around, she bounced into the doctor's office ready to go. I have to admit, I was so nervous about her counts being low that while we waited for them to come back, I thought my heart would jump out of my chest. Luckily, the counts were solid and well above the parameters necessary to start - ANC was 1435 and platelets 285,000.
This phase will last 42 days. Yesterday, Day 1, Catherine received a lumbar puncture with intrathecal methotrexate, Vincristine and a new one for us, and IV drip of Doxorubicin which is a red medicine that will actually turn her urine red. Interestingly, the Doxorubicin is sensitive to light so they put a cover over it while it is being administered. We also started a 21 day course of steroids at a dose 50% higher than she has received before. Needless to say, the active, happy Catherine has quickly disappeared. The Doxorubicin killed her appetite and is making her belly hurt (likely nausea so I have been giving her some Zofran to prevent vomiting), the Vincristine is starting to do it's usual magic of hurting her jaw, and today we experienced some serious 'roid rage. All I can say is 2 days down, 40 more to go.
To make matters worse, I had to take Alex to the doctor today. He just hasn't been his usual jovial self and he had a slight temperature. Sure enough his throat is red and full of pus. We will know tomorrow if he has strep, but Dr. Patty, one of our pediatricians, recommended that if possible send Alex to Grandma's house. And so instead of heading north, I had the pleasure of going the other way, to Long Island. I felt terrible sending him there, but at least he'll get 100% of Grandma's attention vs. 50% of mine if that much right now.
As always, Dave and I are always appreciative our your thoughts and prayers. This has been a tough road for us, and the past couple of weeks, my visits to the doctor's office have not been as comforting as usual. One family I see often received terrible news this week, their 3 year old daughter will need a bone marrow transplant because she relapsed during maintenance. I can't get them out of my mind and I hope you can keep them in your prayers as well. Another family I saw a couple of times lost their child last week. I don't know what he had, but all I can picture is seeing him being comforted in his mother's arms with a binky in his mouth while attached to an IV pole. His brothers, one about Catherine's age, were drawing pictures for him that said how much they loved him. The loss of their brother will be with them forever - so unfair! Please keep them in your prayers too as they deal with their grief. Their cases are not the norm and I had hoped that I would make it through Catherine's protocol without witnessing another patient's death. Wishful thinking on my part. One friend I met says it has felt like a misery chamber there lately. Let's hope that feeling changes soon.