So What Does that Leukemiasaurus Really Look Like? We Know!

Going into the appointment today I felt like we were going in for an interview – excited, but nervous and somewhat anxious.  We so wanted good news but didn’t want to jinx it by thinking it would really be the case. And…

Wahoo!!!! Lenox is in the Low Risk category for ALL and is in Remission! That is the best news we could have asked for. The risk levels relate to the chance of the cancer recurring after treatment so being low risk means the cure rate is 85%-90% after treatment. So here is a nutshell of what we asked about and what comes next…

What classifies her as Low Risk? She is considered low Risk because her MRD (minimum residual disease test, which measures the amount of leukemia cells still in her blood) on Day 8 for her blood was ZERO and for Day 29 in her bone marrow was less than 0.1%.  That is ideal.

What does remission mean in ALL? Unlike tumor based cancers where remission comes often after a long tough treatment regimen, with blood based cancers, remission is considered achieved as soon as the MRD (noted above) gets below a specific percentage. It is a snapshot in time so to speak and unfortunately does not speak for her likelihood
of the cells coming back if treatment did not continue.

One of our big questions was if her blood no longer has leukemia cells in it, what are you “killing off” with all the intensive six months of chemo? While we wouldn’t have bucked years and years of studies that “x” practice yields 90% cure rate, it still is hard to wrap your head around sending your kid into 6 tough months of treatment and side effects when right now she supposedly has so few leukemia cells in her that she is considered in remission. I feel much better about this after the
doc’s answer – The 0.1% that is still left will re-multiply. The docs are able to look at a level of 1 in 1,000 cells but since we have so many millions of cells in our blood supply that means the likelihood that it is still present must be dealt with. Studies over the last 40 years have shown that getting kids into remission is not the biggest challenge; it is getting them to not have recurrences that is the big battle. Inevitably, the few cells that are still  there multiply and the child relapses. If we
stop now, it could and would likely come back. Those 40 years of study have shown that it is generally the “magic” number of 2 ½  years for girls that are needed to minimize the likelihood of a reoccurrence and long term survivorship.

So what does the treatment plan look like? Still a tough next 5 to 8 months ahead. Tomorrow is an all new Day 1.  Day 1 of this Consolidation phase which will last 133 days (yes, I already put that on a calendar and if it moves along as it should Day 133 would be December 26). That is 19 weeks (so about 4 months) during which Lenox will have:

• 6 planned hospitalizations: they estimate these will be 2-3 day admittances that will include a 24-hour IV of chemo and the spinal chemo as well. The first of these is next Tuesday, the 23^rd so then we will have a better sense of how these experiences will go.
• Weekly clinic visits that will have blood counts and quick IV injections of chemo.
• Lots of daily oral/pill chemo.

Which drugs she has varies from day to day across those days and they gave us a detailed “road map” of all 133 days. Other things may arise that cause this schedule to change or be in the hospital more. It sounds unlikely that we will have all those days move along right as they should and that instead there is movement and fluctuation of when things happen based on her counts – if her ANC or her platelets get below a certain level, then the next chemo may get held off a little. A great relief is that so far, it does not look like her regimen will include radiation which I was pretty worried about. Sounds like
all the side effects will be the toughest part of this period – including, but I am sure not limited to: inability to fight infection, weight gain or loss, acne, insomnia, being tired, nausea, vomiting, mouth sores, sensitivity to sunlight,
hair loss, headaches, nerve problems (which we are already experiencing), weakness, fatigue, brusing, etc. But man I feel SOOOO grateful to be in this Low Risk group where our odds of success are so very good.

After this 19 week “Consolidation phase” as they call it, we will enter Maintenance next year and at that point, Lenox should be able to return to school regularly and get back to dance, swim lessons, etc. and have cyclical rounds of chemo until she is about 2 ½ years from her diagnosis date.

I have to give a huge THANK YOU to Rose Cadena and Grace Drake!!!! They came in from Houston and
today played with Lenox at the doctor office and kept her company for several hours while Liz and I had some good uninterrupted time with the medical team. That would have been such a harder discussion otherwise and knowing she was
well cared for and having fun was such a huge relief. Grace (and Rose of course) is an awesome and brave cousin, friend, babysitter and role model. I hope Lenox is like her when she is 8 years old!

Lenox…  Lenox is now avidly creating her own impromptu limericks and rhymes. For example, this morning we got “I love pancakes in a pan, I want to eat pancakes as much as I can.” Its so fun and comes out of nowhere. We asked the doc if this might not be a new side effect that she could do a medical journal article for.

Lenox also got a major hair cut today at home by yours truly and loves it. It is a little bob below her ears and should make the hair loss a little less dramatic.

More pics to come. Love you All!