I’m back here in Columbus with Jennifer. She is still making others on the transplant floor look bad as she has rolled through day +8 now without fever or vitals being an issue. Her and I went to the support group meetings they have here for patients and caregivers. The nurse and social worker were amazed someone at day +8 allogeneic BMT (meaning non related donor) was up and going to a support group meeting.
Having said that, I can tell you Jen is feeling fatigued. She still cannot overcome this cough and she told me this evening she just can’t get comfortable and rest like she wants. She fought tears back while telling me this. So now I’m on a mission to find her some relief. I pride myself in being persistent. …. aka Momma Bear.
We found blessings everywhere we could find them today, …maybe more me than her. Her grandparents stopped in Columbus on their way back from Florida. It is the first she has seen her grandpa since her diagnosis and first she has seen grandma since early December.
I also found a blessing or maybe knowledge I needed to find today at the support group meeting. I had questioned us going as I thought maybe Jen would just want to rest. But we went. There have been times, I hope for Jen to be excited about something or looking to go do something she has been wanting to do. I want the world for her and will move mountains to make it happen. But sometimes as I am spinning circles moving mountains, she just wants to stop, rest, and heal. For a while even small things can seem overwhelming. Reading text messages and responding, opening a card, calling her insurance company, or filling out a form. I find myself repeating to her what needs done like a mom of a teenager. I actually realized this has been ongoing for nearly a year. Which makes me wonder how long she fought low counts and fatigue. I thought before cancer this was due to laziness. After her diagnosis I thought it was a sign of her surrendering to her illness. I was wrong on both counts.” It is cancer, chemo, and healing. I needed to learn that.
So prayers tonight for a quieted cough, less fatique, and patience on my part. She will get through all this. And so will I.
This morning a new doctor on Jen’s case came to see her. A new look at her brings a new view and a different approach. Although we were disappointed Jen didn’t start chemo yesterday, the delay may have been a blessing in disguise.
The doctor looked at her file before coming in and had a couple questions about why induction chemo and not consolidation. Because her counts remain well and because it seems as the cancer cleared up, so did the rashes, he wondered if she is actually in remission.
He shared with us there was a test that had not yet gotten back that is more specific at looking at the abnormal cells and determine if they are premature new growth cells or cancer cells. And he thought possibly some since her numbers are in average range, this very well can be the case. He also thinks possibly the rashes are leukemia in her skin and as her cancer improves, so did the skin.
So while waiting on that test result, Jen gets results of her echo this morning. Frequently, induction chemo can do heart damage. When young like Jen, the heart repairs itself over time. Jen’s heart showed some damage. Then earlier then expected, the result from her biopsy comes back. And it is a good news, bad news thing.
The good news is because the need for time to repair her heart, they think consolidation chemo is the way to go. This means five to six days in hospital and home. It is not as intensive, shorter stay, and saves the induction chemo for transplant. The bad news is she truly isn’t in remission, as the doctor had hoped.
So now with a different plan, she moves forward with 2 hours on chemo and 12 hours off and that repeats for five days. And to her delight, she gets to come home early next week and be home for her birthday.
GOD IS SO GOOD!! THANK YOU EVERYONE FOR THE PRAYERS BECAUSE MY SISTERS BONE MARROW SHOWED NO SIGNS OF LEUKEMIA 😁😁😁😁😁😁 NO NEED FOR CHRISTMAS PRESENT BECAUSE THIS IS ENOUGH FOR ME!! THANKS ONCE AGAIN FOR THE PRAYERS EVERYONE YOU ARE ALL AMAZING PEOPLE!
So I’m walking around the grocery and my sister calls. She tells me a few things about her day. She has a rash, they took out her line, etc. She buried the lead! Her initial biopsy results from yesterday show no leukemia cells or blasts at this time! It doesn’t mean remission yet but it’s a step in that direction!
Jen will need a bone marrow transplant. If you are not already on the registry, please consider becoming someone’s potential match.