Round two and the next phase of treatment

The past week was pretty quiet as Eli we awaited the result of the bone biopsy and were between rounds. Dana and Eli have been settling into RMH which will be home for the months ahead. They were able to take in some of the activities and resources at the house and enjoy some sunshine.

Yesterday (Thursday) Eli had his clinic appointment and we were to learn the results which determined the path forward. We talked with the doctor for over a hour and half and here are the key takeaways:

-Not full remission but close. Disappointing but actually a good thing because of treatment plan he'll be on now.

-Qualifies for a couple of studies aimed at refining treatment to improve outcomes and take a lesser toll on the body. This is a good thing.

-Though the treatment will be less hard on his body its longer and we're now looking at mid-late November for a return home.

-Depending on his number and on travel restrictions he *might* get a week here and there to come home.

-Yesterday/last night was rough and the days ahead have the potential to be the same as he had a not unexpected reaction to the chemo and Dana was in the ER with him until about 2am.

The longer version:

-Eli is not in full remission but he was really, really close to where they consider remission. This means the course forward keeps hitting the Leukemia harder. Though disappointed he is not in full remission we knew this was a likely outcome. On the plus side, the doctor told us this is good because they are finding the small percentage of children that relapse tend to be those who from this test appear to be in remission but there's a little bit of leukemia that's too little to detect and it comes back. So better to be in remission and and treated as if you're not than to not be in remission but treated as if you are.

-Being on the "not in remission" course does however mean that future rounds of chemo will be stronger and it takes its toll on the body. Because of where he's at, they had spoken with us at the outset about studies he may qualify for. Given his current number and risk factors he qualifies for study that will differ from the standard treatment. The overall goal of the study is to see if using a treatment known to be effective in cases of relapse produce better results if used earlier. The main thing is this isn't a new or experimental thing, its a tweaking with the recipe type thing. The big upside is that it's less toxic than the standard treatment as there will be rounds of immunotherapy in place of some rounds of chemo. 

-The benefit of the gentler treatment however is that its longer. We are looking at seven months from now before he's able to transition from RMH to home. This puts us in mid-late November for a total nine months away from home. After November, he will still need treatment for another year and half. Some of that my be done here in PG but it sounds like he'll be going done pretty regularly with many of those trips being fly-in/fly-out day trips.

-Between now and November there is the chance of him coming home once or twice between rounds but this won't be until at least July or August and will be dependent on a number of factors including his numbers but also travel restrictions and the public health risks. There is also the more likely possibility of K and I being able to travel down (we can't at present) to spend some time at RMH with.

-Yesterday/last night. Eli has shown from the first round he is sensitive to the side-effects of treatment. As he started round two yesterday they came with a new round of side-effects. One of those is flu-like symptoms, which they treat very seriously. Dana had to monitor his temperature and about 8pm he started running a fever. This always requires a call in to check with the oncologist for direction. They said to wait a half hour and without improvement take him to the ER to be checked. As a cold or flu or inflection of any kind can escalate very quickly they have to do bloodwork to eliminate those possibilities and ensure its a reaction to the chemo. The bloodwork was cleared but they kept him until his fever came down and also his heartrate which was elevated came down and they got back to RMH at about 2am. This morning his fever is back and so they moved the appointment he had for today up.