Tuesday, Day 5 of treatment, was a little bit of a roller coaster for me, but it ended on a high note. I stayed home with Laurel last night and took her to pre-school this morning while William spent the night with Elliott. William told me Elliott had moments of whimpering last night and a look on his face William had not seen before. That's probably the most challenging part of having an ill child who can't speak yet. They cannot tell you what is wrong, so you don't know if they are in pain, scared, frustrated, tired, or something else all together. Hearing that was a bit unsettling for me, especially since he seemed even more subdued and lethargic than normal this morning. I arrived at the hospital just as the oncologist was making his morning rounds and all of his labs looked good and still moving in the expected direction. While Elliott was resting, we took the time to speak with another patient on the floor and his mother who were referred to us by the nurse with our oncology clinic. He also had T-cell ALL, but the leukemia had also spread to his spine and brain making his case a bit more complex. He was diagnosed in March, so he is a little further down his journey in another phase of treatment (I will explain the phases of treatment later), however, the information they were able to share with us was very enlightening and gave us a better understanding of what to expect. While it is certainly difficult having leukemia as a child, this patient is 15 years old. That is certainly difficult too since one minute you are transitioning to high school and enjoying socializing with friends, and then suddenly you receive this diagnosis, can't go to school, have limited ability to socialize in person and enjoy the activities you once did. In Elliott's case, he won't know what he is missing. We were able to talk with him about how the treatments affected him, side effects of chemo, lifestyle changes, etc., so that was a great conversation.
While the morning was a bit sluggish for Elliott, the afternoon was a completely different story. I picked up Laurel from school and brought her to the hospital so she could speak with the child life specialist and have playtime with Elliott. Elliott literally lit up when Laurel walked in the room. His partner in crime was there at his bedside and he was ready to play. The child life specialist read Laurel a story about Hannah who has cancer and the book helps break down cancer on a kid friendly level. She also gave Laurel a "chemo duck" to help explain the treatment process better and let her interact with the duck to understand what will be happening with Elliott. After that, it was off to the oncology unit playroom for some reserved private play for just Elliott and Laurel. Elliott's face once again lit up as we walked down the hallway to the playroom. You could tell he was so excited to get a change in scenery and leave his room. They had the whole playroom to themselves! It was great and I really appreciated that dedicated time for the two of them to play like "old times". :-)
When we left, it was clear Elliott was worn out. He may have overdone it a bit, but he was so excited to play. We returned to the room for snacks and an attempt to wind down for dinner and bed, although Laurel was wired up and on overdrive until we returned home.
So the day started with some low moments and wondering if he was in pain or discomfort and ended with seeing SEVERAL smiles on his face this afternoon. Today was the first day we have seen smiles since he has been in the hospital and if you have seen Elliott's big bright 2-tooth smile, you can't help but smile when he does.
Before I end the post, I mentioned I would explain the 3 main phases of treatment for leukemia. It will probably help provide some background on what a typical treatment plan looks like for T-cell acute lymphoblastic leukemia (ALL) and how long we expect to be on this "journey" I keep referencing. The three phases are induction (the phase we are in), consolidation/intensification, and maintenance. The induction phase is 28 days, with the critical evaluations being at day 8 (Friday for us) and day 28 (August 22nd for us). At those two points, more extensive tests will be done to determine how his body is responding to the treatment and will give us the most accurate picture. During this induction phase he will be given a combination of 4 drugs either IV (through a central line or mediport), PO (by mouth), or intrathecal (into the spinal fluid, while sedated), his immune system will be very weak during this period as the chemotherpy drugs work to kill all the leukemia cells, but in the process end of killing both the good cells and the bad cells. So don't get mad if we tell you to stay away or stick a thermometer in your mouth if you come to visit! :-) The next phase is consolidation/intensification which lasts around another 6 months. We haven't talked in detail to our oncologist about this phase yet. It is very much a day by day discussion for now, but the way I understand it, a different combination of drugs will be used to kill remaining leukemia cells after the induction phase. Most can be completed on an out-patient basis, but we may have some 2-3 day hospital stays from time to time. The last phase is maintenance and will last for about 3 years (it's sometimes shorter for girls at 2 years, but 3 years for boys). This will include less frequent visits to the oncology clinic and more oral medications. After that, the hope and prayer is that we find no traces of cancer and we can consider that Elliott has kicked cancer's butt!! For more info on treatment, you can visit this website.
So, we have quite a road ahead of us, and this is probably the easy part if you can believe that. I feel confident we will have peaks and valleys, but we will be praying for God's grace and guidance every step of the way and know we have many many people praying with us!