Two years ago today, Eric was admitted to hospital for the first time. We had an indication from his GP based on his blood work that he had leukemia. However, it wasn't until he had a bone marrow biopsy the day after being admitted to hospital that we learned for sure it was cancer, and not until the Thanksgiving long weekend that we were given the official diagnosis of MDS (myelodysplastic syndrome), not leukemia.
Looking back to two years ago is surreal - the things we didn't know then; the things we know now that we wish we didn't. And everything we, mostly Eric, have been through in the last two years: diagnosis of MDS, and then a secondary diagnosis of AML, so many rounds of chemo, hundreds of nights in hospital, loads of blood and platelet transfusions, allergic reactions, MRIs, ECGs, EEGs, CT scans, ultrasounds, plenty of blood draws, bone marrow biopsies, surgeries, a bone marrow transplant, PRES, chronic GVHD, so many medications, relapse and, most recently, a newer drug meant for adults with a different condition to buy us some time that has miraculously caused Eric's donor cells to rebound to 100% and eliminate the abnormal cells. It has been a truly awful journey that I wouldn't wish on anyone, ever, but today, we are so thankful that Eric is strong and stable, and grateful for the community that has rallied around us.
On Wednesday, our nurse clinician called to let me know the results of the chimerism tests were back and show full donor cells and none of the mutation that marks Eric's disease!!! They also advised that his lung function is stable compared to his last test, but we need to continue to keep a close eye on it. His function is around 90% and pre-transplant he was about 107%
Eric had a check up in clinic today. His platelets were under 100 when he had his last check up 2+ weeks ago. Decreased platelets is a known side effect of his current treatment. Platelets help blood to clot so low platelets mean lots of bruises (bleeding under the skin) and could mean uncontrolled bleeding externally. Eric is covered in big, dark bruises (and is still taking his medication) so we knew his platelets hadn't increased since last visit. In fact, today his platelets were 39. Yours and mine are likely in the 300s. Without active bleeding, they will let platelets drift quite far (10 if you are inpatient) before giving a transfusion. So today Eric's doctor chose not to give him a platelet transfusion; however, he did stop his current treatment 4 days early (24 days of 28 day cycle completed) because he doesn't want Eric's platelets dropping into the teens. Eric will have a blood test in the community (life labs, no drive to children's!) at the end of next week to see how his counts are trending and then a check up in clinic the following week. Depending on his count recovery, at that time we will decide on timing to start the next round of treatment. Eric's hemoglobin is good and his neutrophils (germ fighting white cells) are down a little from last visit, but *okay* at 1.0. The doctor did say they've been seeing colds and covid and now starting to see flu as well.
In other news, its Millie's 3rd birthday today!
No comments:
Post a Comment