September 24, 2020

Enjoying a visit from Jenna. Erica came as well after I got home from the hospital, but I somehow have no pictures…

It’s been so long since I wrote an update, and so much has happened, I’ll do my best to remember the highlights:

The transplant: After I got my sister’s stem cells the long wait began. I got lethal doses of chemotherapy, and extra long dialysis sessions. Usually engraftment starts to show up in the blood numbers between days 13 and 21ish. Day 21 came and went and my white cell count was still undetectable. The days rolled on slowly. My appetite went away. Diarrhea set in. My hair fell out. I did yoga. Took walks. Took pills. Got transfusions. Day 31 still no white cells. Monday July 6th I had a bone marrow biopsy to see what was going on. It was a tense time. If the marrow was empty, that basically would mean transfusion dependence until we decided I’d had enough and would die. If it was my marrow regrowing, the cancer would be back. But thankfully the best of all scenarios took place: it was Erica’s cells growing! But there were very few of them. This may have been because of all the anti rejection meds I was on, or because of dialysis, or because I was on antibiotics for a fever I’d had… who knows. We waited longer. We got a boost of more stem cells from Erica. Finally, after 51 days in the hospital, I was able to go home. My platelets were still very low, and I still needed them to be transfused, and I was at the hospital every other day getting dialysis since we didn’t want to do dialysis at home with such low platelets… but I was HOME!

Emotionally it was difficult. In the past I’ve dealt with stress by imagining the worst case possibility, accepting that it may happen, and moving on. That doesn’t work as well with death and imagining my children growing up without me, Mike raising them alone. It’s emotionally confusing too, because death seems like such a sweet release… falling into the arms of Jesus and moving into a new body that has no pain. Part of me just hoped it would come quickly. To deal with all the waiting in this heightened state, I just shut down emotionally. I became numb. I still cried, but rarely. The highlight of my day was Mike coming to visit, and bringing me lunch.

My morning pills; the first of four sets throughout the day.

The other highlight was interacting with my nurse/friends. It’s a strange relationship after you spend so much time with them… there’s one I became especially attached to. She was a ray of sunshine and laughter in an otherwise stormy world. On the day that I was going to get my biopsy results her shift was over at 3. Instead of going home, she came to my room and taught me how to play cribbage. We passed the hours till the results came at 5:30. Then she went home. What a gift.

During this time, Mike had help with the children. My parents and Mike’s parents both took turns taking the kids to their respective houses for “Grandparent Summer Camp”. We couldn’t have done it without them. Despite this being a wretched time for our family, out kids have not known a day of want in their lives. They are thriving, and have special bonds with their grandparents.

The other day Marian came up to me and said, “When I’m grown up I want to do dialysis too.”

Recovery: Since coming home I’ve been enjoying spending time with Mike and the kids, but I’m still not quite myself. The first month I napped daily. Now I’m off the naps, but I go to bed between 7:30 and 8, and am still emotionally numb. I’ve taken up the cooking again and the meal planning, but Mike still does most of the dishes, the laundry, the shopping, putting the kids to bed. He preps all the dialysis stuff. He makes calls to the insurance company on my behalf. The homeschooling has been a joint effort, but I’m terribly indebted to Mike. I find it comforting that Mike just got a physical and he got some blood work done too. He has a hemoglobin of 16. All his numbers look gorgeous… but 16 hemoglobin!!!! I can’t imagine what that must feel like. Maybe some day I’ll know.

The future: I had a bone marrow biopsy last week that showed no cancer. Isn’t that great? But… it’s hard to feel happy since I still have to suffer through dialysis every other day. At least this gets me to the point where I might be able to have a kidney transplant. I have an evaluation for kidney transplant October 8th, and I’m desperate for them to approve my sister giving me her kidney as soon as possible. I’m scared that if she does give me her kidney, she’ll suffer, or end up on dialysis. In all honesty, I’d take cancer over kidney failure any day, and I really don’t want that for Erica. I know this sounds spoiled… can’t I just thank God for being cancer free and forget about the kidneys? I’m afraid that’s not how suffering works. Imagine I was hitting you on the head with a hammer and handed you a hundred dollars. “Stop crying and be thankful! I just gave you a hundred dollars!” Yes, God, thank you for allowing the bone marrow transplant to work. Please stop hitting me.

Mike has become a cannulating expert. I usually draw on my arm where I want him to poke, and then he cleans it and goes for it. He’s gotten better that the professionals. In the picture, the bottom tube is the arterial (pulling blood), top is the venous (return).

Prayer

  • Kidney transplant would take place in time for us to move to Boston in December.
  • No Graft Versus Host Disease.
  • The cancer would stay gone forever.
  • Dialysis would become less painful.
  • Some of my blood numbers have not been quite right… so prayer that my haptoglobin and LDH would normalize and that there would be no hemolysis.
  • Praise for how well the kids have been doing! They are doing so well with school and with obedience and with loving each other.

Thank you for your prayers! I still have hope that God is good, and that he hears and cares… even though I don’t understand why we suffer and die. My hope is in Him and in the resurrection.

5 thoughts

  1. Thank you for the update. Praying daily for you and your beautiful family. I am Michael’s sixth grade teacher and I am so proud of him for the husband and parent he has grown into. I am thrilled to hear your children are flourishing in spite of adverse conditions. I feel your story so much due to the fact my daughter is awaiting a liver transplant as we speak and has two small children. My husband and I are doing the at home learning due to our family quarantining during Covid. As difficult as it can be you have it right….God is good…. all the time…even when we don’t understand it. Keep looking for blessings and we will continue to pray for you and yours. Your are an amazing family. ❤️

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  2. Heidi, what a gem you are; so authentic and funny and smart and true. I hate this path you’re agonizing along but I am trusting Jesus with you, that He is always still good despite any other indications. I’m praying for the kidney transplant to be perfectly, gloriously successful and that you & Erica will BOTH go on to have long, meaningful, happy, healthy lives in JESUS’ name. Or, I’d settle for a miraculous healing right now for you in Jesus’ name. Amen. Honestly, your amazing eyes show out like crazy with your shaved head. Wow!!! Have you had a chance to watch “The Chosen” while you’re mending? It’s free on YouTube. I think you’ll connect with its Jesus as I did. Much Love 💗 Your sister, Julianne P.S. I still remember this cute moment with you at childcare at Sanctuary when we were dropping off (picking up?) our kiddos and I said you seemed like you had it all in stride even with 4 kids and you laughed and said you hadn’t even cleared the breakfast table or done the dishes😆 I found you so charming and sincere. I liked you even more for your confession.

    Sent from my iPhone

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  3. Thank you for the update. I think of you often and miss those Monterey days! Jesus is praying for you that your faith would fail not. We are homeschooling now, too (in Virginia). We planted a beautiful fall garden. The rabbits found it beautiful and ate it all up except the broccoli, which is in pots. Oh, well. At least planting it was a fun morning of digging in the dirt with Paul.

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  4. Dear Heidi,
    Praying for you from Albany, Georgia. I laugh and cry from each of your post. I am so sorry you are suffering and in pain. Take heart dear sister, our Redeemer lives.

    Chris and Tara Lynn

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