I feel like my thoughts are sporadic and jumpy today. Unoragnized and unplanned out. Please forgive me as you read further. I’m having troubles finding how I want to word everything so that it makes the most sense and not give out false information…
Last Thursday the girls had their bone marrow biopsy after completing their first round of chemo. We were told that results could take up to a week because we were waiting on the MRD (minimal residual disease) results. Waiting is seriously the hardest part. The girls counts were up, so we have had a nice time with them, even taking a few little wagon rides in the hall. It’s been a nice distraction.
Saturday we received some of the results. When the girls were diagnosed their biopsy of the bone marrow showed 20-30% blasts. Saturday, our doctor told us that there were 0 blasts present. REMISSION. After round 1. I wanted to shout it from the roof tops, but at the same time I didn’t, because I know we are far from done with treatment. Much to everyone’s surprise, remission is not the end. As stated above, remission is “a temporary recovery”. The girls are not cured. Treatment is not over. Yes, remission is the goal, and it’s currently a nice big step for the girls, but we are far from out of the woods. We were told that they like to see 0 blasts by the time they complete round 2. Even though we are at 0 already, the girls will still undergo round 2 which is another 10 days of intensive induction chemotherapy. Exactly like their first round.
After receiving and processing that news, we had more waiting to do. Waiting to see if the MRD was positive – which would mean a bone marrow transplant was necessary; or negative – which would mean the girls were probably low risk and after round 2 of induction chemo, they could receive less intensive chemo and hopefully avoid a BMT (BMT is still sometimes necessary in low risk, but less likely). Well, we have that news, and the MRD is negative. 0% on both girls. This was great happy news. We took another wagon ride to celebrate.
Round 2 of induction chemo will begin on Friday. Both girls will get spinal taps and their spinal fluid will be tested again to see if blasts are present (not likely since there were not blasts present in their spinal fluid before round 1 of chemo, but still need to be tested to be certain). They will get a shot of chemo in their spine as a precaution and Friday night we begin our 10 day journey of intensive chemo again. This comes with the same terrifying risks of infection as the last round, but includes one more factor. Flu season.
Flu season can be difficult for healthy children. Imagine if you had no immune system and caught influenza? Not good. Aaron and I have been vigilant during round 1 of chemo that if we left our bubble of a room, we changed clothes and washed up before touching the girls. Did laundry constantly. We wiped everything down a few times a day. Door handles, table, crib handles, light switch, thermostat, remote, phones, phone chargers, swings and bouncies, iv pumps, everything. We even went to the extent of when/if we brought a pop can in the room, we wiped that down. My hands were raw after our last neutropenic spell from constantly washing, and I expect them to be the same, if not worse, after next round. Another notable challenge is after each round of chemo, the girls will be at 0 (neutropenic) longer. The bone marrow gets fatigued and takes longer and longer to regenerate. This last round Kendal was at 0 for around 17 days and Kenedi around 21 days. That’s a long time without an immune system.
Following round 2 if the girls respond just as well and are healthy enough, we will hopefully be going home for a week or so. During this time, I know everyone will want to visit and see us and celebrate the girls, but we kindly ask that you don’t. I know it’s hard, it’s hard for us, too! We miss our friends. I miss my friends and face to face interaction with people over the age of 3 that aren’t nurses. I get it. But the girls health comes first. Next summer we will be able to hang out all you want. Please be respectful of us during this flu season.