Stanford has finalized the donor selection and with great joy I am pleased to announce that my dear sister Kimberly will be giving me her stem cells!! Thank you Kim!
Thank you to all of my siblings for being willing bone marrow/stem cell donors! I am extremely blessed to be el conchito of such an amazing family. El conchito just means baby of the family but I get a kick out of the direct translation, “residue left over.” I remember the time when I was living in Ecuador, after sharing a photo of my family, a man said, “…oh, tu eres el conchito.” Then he explained to me what that meant by saying, if you have a bucket of water and dump it all out, when you look inside the bucket there is still some water residue leftover, that is el conchito!
Thank you David, Kim and Teryll for jumping through all the hoops to get to this point!
We got a call early this morning advising us to get Syd to the ER. She has been low on iron and had a blood draw yesterday evening that showed low platelets. We are talking my kind of low platelets post chemo. She is doing well and lots of tests being run. Bishop and I gave her a blessing. Stacy and I arm wrestled to determine who would get to spend the night in the hospital with her. Stacy won😞 It’s all going to be okay! 🙏
There are many factors and moving components to this process…
Cycle 1 of chemo is effective enough to drop my bone marrow blast cell from 65% to <5%. Then they keep me alive until my immune system is strong enough to work on its own. This is when they let me go home for a few weeks. UPDATE: This went as well as could be expected. Only one infection to treat then home after 26 days in the hospital.
During my two weeks at home I meet with Stanford to begin the preparation for a bone marrow/stem cell transplant. UPDATE: This happened on 3/29 earlier than first anticipated and went well. We hope to have a calendar plan of events at Stanford soon. At the moment we have a high level game plan from them.
After the two weeks at home, I go back to the hospital for a consolidation cycle 2 of chemo. This could be as short as three days. UPDATE: I was only home for one week and I’m as of this writing, I’m on my last night here of the consolidation chemo. The dosage is ~30 x the stronger than the previous but this is in 6 rounds of 3 hours bursts 12 hours apart vs the previous 24/7 for 7 days in conjunction with another chemo med for the first three days. Tomorrow I expect to be back home for a week or two of recovery with frequent trips back to Roseville KP for blood draws and transfusions as needed.
After chemo cycle 2, I go to Stanford for the transplant. This assumes one of my siblings is a match and is ready to donate promptly. UPDATE: Three siblings matched. Later Stanford boiled it down to two and they are in the process of a bake-off for the best match of the remaining 2 based on other nuances that were not checked for in the preliminary tests since they don’t often have multiple matches. This may take a week or so to finalize.
The transplant goes well and there are no or minimal adverse reactions to the transplant. Then, I think I’m cured… UPDATE: This is where it gets real folks! More on this later but here we are on the path of the unicorn!
Love and gratitude to you all! Thank you for your thoughts, prayers, service, meals and generous donations to help me and my family during this process. I know God lives and prayers are answered! There are angels above and there are you angels on earth to care for and serve others. May you be blessed and your burdens lightened as you turn outward to help those around you.
My oncologist called yesterday to let me know things are lining up at Stanford. He used to work with my Stanford oncologist so there is already a good relationship between them. He also told me that I need to go back to the hospital for consolidation chemo in a day or two. Today we received confirmation that I’ll have a room Wednesday and they want me there by 8:30 AM so I’m there before rounds.
First the bad
Last Friday, we got home from Stanford at 11:00 PM, exhausted in every way.
I don’t get two weeks break at home between chemo cycles, I’ll take the 1 week!
A third bad thing but who focuses on the bad things, I just need 3 of these
Now the good!
The sooner I start consolidation chemo, the sooner I’m ready for the bone marrow transplant, theoretically…
I should only be in the hospital for ~4 days if I don’t get an infection or such
I’ll be able to recover at home with 2-3 trips/week back to Roseville, ~2 to 5 hours depending on if I need just a blood draw or an infusion…