Consolidation Crying

Kate's new phase of chemotherapy, Consolidation, began on Thursday the 31st of May. It was a rough doctor visit. Kate had a lumbar puncture with intrathecal methotrexate planned so she wasn't allowed to eat all morning. We arrived at 10:45 and made it back to the room at about 11:30. First, we signed the forms to particpate in the medical study for treating ALL and then we were randomized in the study. Kate was randomized into the standard treatment arm of the protocol. That means that she was assigned the same treatment that she would have been given if she hadn't participated in the study. (It is what all children with standard-low risk pre-B ALL receive.) The other possibilities would have required more injections of another chemotherapy agent along the way. The researchers are trying to ascertain whether adding more doses of another medication will give a better cure rate. Enough of that...Kate will not be getting the extra medications.
So when all of the paperwork was done they tried to access Kate's port but found that there was a clot in the port. They tried to dissolve the clot with heparin (twice) and then a clot busting medication called TPA. After 2 and 1/2 more hours of waiting for the medication to work on her port (and of Kate asking me 100 times when when she'll be getting her sleepy medicine so that she can eat) she finally cried herself to sleep on the stretcher. Needless to say, that was pretty hard to watch her have to endure.
The medication finally dissolved the clot and her port worked so she could receive her chemotherapy. They gave her the sedating medications, Versed and Fentanyl, and that too was a lot of drama. Kate has been having a harder time each week with the Versed and as a side effect she cries uncontrollably. Picture a starving, crying and inconsolable 5 year old being forced to lay flat for 30 minutes after the lumbar puncture. Not fun! She was having such a hard time that they gave her a reversal agent for the sedation and she did finally calm down a bit. They are going to try different sedating medications next week and see if they can make the experience easier for Kate. It was a heart wrenching day for her and I. I am so grateful for my dear friends who were watching Jackson and Ava so that I could give my undevoted attention to Kate and be there to help her through the process. We couldn't do this without our friends!
For the consolidation phase of treatment Kate is on daily oral chemotherapy, antibiotics and an acid blocker. She receives a lumbar puncture each week with intrathecal methotrexate and gets IV chemo once a month. Her hair is thinning more each day and we are seeing a lot more of her scalp but it is hanging in there. Amazingly, Kate is still smiling, mostly happy and wanting to go to the pool!