Everyone keeps asking for the roadmap, "When will Sebastian be finished treatment and get to go home?". This is a great question I wish I had the answer to. I wish I had all the answers...it's extremely frustrating to not 'know' and not be able to let family and friends in on 'the plan'. It's really a day by day, week by week process that can change in the blink of an eye. It makes me feel vulnerable and helpless, like I have no control. I'm such a planner with everything, and this drives me crazy.
So here it is, the best 'map' I can give in this moment...
Lets start with a few basics. What is B-cell Acute Lymphoblastic Leukemia? also known as B-ALL
I found a really great video that explains it here. I think some of the treatments make more sense if you understand the type of Leukemia Bash has - they actually said he was a mix of both ALL and AML (Acute Myeloid Leukemia) and AML is very rare, but the AML cell count found is very low and they will treat him as ALL. Him having both makes him a unique case though, and I believe the reason Saskatoon Oncologists wanted to keep him as a patient, so they could get experience...(I'll take the experienced please). Also since he is so young - Infant ALL, he is at a higher risk for infection and its tougher for his body to be able to fight things off, therefore he is much more closely monitored for fevers and they want to keep him inpatient for monitoring.
Alright, here is a link to the 'basic' phases on the Sick Kids website: Here they explain a lot of his medications too. There are normally 5 different phases, Bash has an extra one at the start, which is his next one, we just finished Phase 1.
- Induction Phase (5 weeks)
- Induction Intensification Phase (4 weeks) *we are waiting to start this phase*
- Consolidation Phase or Re-Induction (3 weeks)
- Interim Maintenance Phase (4 weeks x3 - we do this phase three times alternating other phases)
- Delayed Intensification Phase (8 weeks x2)
- Maintenance Phase (there is no time frame, should be completed after 109 weeks)
This may all be changed depending on if he sticks to this treatment plan. In approximately 4 weeks he should be finished the 'Induction Intensification Phase' where they'll check his bone marrow again. If they find none or minimal disease at this point we continue on. If the cancer remains then we may need to do the bone marrow transplant treatment which will be another long journey.
We met with our primary Oncologist Dr. Lucie on Sunday to go over the next phase, what to expect, and side effects of the chemo. We have to wait for his neutrophils white blood cell count to be above 750 before they can start. We learned that he will be an in-patient for this phase and most of the next phases too. She said that we would be staying at the hospital until week 19 of treatment. Five more months. That was really deflating. We were hoping to be discharged by the end of February, and only coming in for clinic visits. Dr. Lucie expects at least two years of treatments if we continue on this course - 109 weeks, not counting any delays from illness or infection.
Again, all this could change. It depends on the results of the bone marrow aspirate taken at the end of this phase (3-4 weeks). We're hoping for good news, and to follow the "easy" path of this treatment plan. Sebastian has been handling the treatments really well, and no blasts (leukemia cells) have been seen in his blood samples for a few weeks now, so we have high hopes the treatments are working and he he will get over this upcoming hurtle.
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