March 22, 2020

Here’s what’s up:

  • Azacitidine and venetaclax have worked! Praise God! And with no crazy side effects!! My latest bone marrow biopsy has shown the cancer to be lower than ever. I’ve started another round to see if we can get to zero cancer cells in the marrow. My next biopsy will be in a couple weeks.
  • Thank you for your prayers for a healthy time during my low blood counts. For the first time I didn’t end up in the hospital!!
  • The Boston plan has fallen through. They have had to review their protocol on the dual marrow kidney transplant program to exclude people with myeloid cancers after a tragic outcome.
  • Next steps are uncertain… I’m in a good window cancer-wise for a bone marrow transplant, but first my oncologist wants me to get a different dialysis access. My femoral catheter is a high infection risk, and a graft or fistula would be much better (especially since I won’t be getting off dialysis any time soon). The fact that they’re willing to do the transplant on dialysis is quite miraculous. They’ve never done one here, so I feel very fortunate they are willing. You may wonder, why not go somewhere that specializes in these? Well… there’s no such place, unfortunately. Hospitals have done a couple as one offs, but no one in the country has done even 15 of these. Unfortunately, what with the current pandemic going on, bone marrow transplants are getting postponed. Dr. Hall reckons I’ve got at best a year before the cancer comes raging back, more resistant to chemo. He’s told me to think long and hard as to whether I even want the transplant. People with my variant of MDS (3;3) don’t have great odds… roughly 1/3 die during transplant, 1/3 die within a few months due to graft versus host disease or lack of engraftment or relapse, and only 1/3 go on to live beyond that. One good year starts to sound pretty appealing.

In other news…

So long dialysis center!!!! We’re starting training to do dialysis at home tomorrow! The timing could not be better. I will no longer have to spend 12 hours a week in a room full of people who’s health is… well… not so hot. Of course, I’m one of those less-than-healthy people, but in these uncertain times it’s best if we don’t all hang out together.

Goodbye Chair 18… it’s been… bloody real.

We were fortunate enough to go spend some time with family on the farm! What a great time!! I feel so lucky to be related to these people. They don’t get any better than this.

Here we are in Norwalk with Big Jake, my mom’s dad. He’s now 97! I’m holding David, then there’s James next to me, Mike is holding Marian, and then there’s Liam doing… something loud?

We’ve now been homeschooling for a week, and I’m surprised to say I’m enjoying it. The kiddos are doing great and staying in good spirits. We’re doing what we can to get some good outdoor time as well, and to continue their tae kwon do with a live stream class, and Awana by sending in videos to their teachers.

Today we also got to go explore around Indian Lake. Despite the mud, it was a wonderful hike. The different personalities in the family really came to light… Mike, Cliff and David walking ahead purposefully and diligently, stopping only to let the rest of us catch up. Liam and I brought up the rear looking at leaves, sticks, rocks, bark, mud, birds, grass and talking off and on along the way. James went from person to person live streaming his every thought.

Marian for the most part rode on Mike’s back, but got to walk the last little bit.
David
Liam
James

A big highlight since my last post was a weekend getaway I took with my sisters to a little air b & b outside Chicago. We laughed so much my abs hurt. There was tasty food, art stations with music, poetry writing, interpretive dancing, costume designing… but most of all hilarious commentary at all times.

Even though I don’t pee much what with kidney failure, I do still make use of the bathroom for other fun activities, such as giving Marian her first haircut, bathroom-ballet, and pretending to be a supermodel with my sister.

Prayer

  • That my kidneys would be miraculously healed! The Drs say they’re fried, but I know God could make them new with just a word… or a thought. I long for Him to be willing!
  • That I could get a transplant soon, and not die.

Thank you SO much for following along and being willing to pray, even if it’s just once as you read through the list… God answered my previous posted prayer requests with a “yes” to it all! I’m indebted to you all. I do have one final request to make of all you healthy people. With covid-19 spreading about, blood drives are being canceled and there is now a blood shortage across the US. Would you be willing to go to the Red Cross and donate blood or plasma? Sadly, though the supply is going down, the demand is ever present… I especially like the taste of A+.

24 thoughts

    1. Heidi!!! You beautiful, Brave one! Your resilient and cheerful nature shine through your health battles. I pray Jesus heals every part of you in His precious and powerful name!!!!I pray that ‘you shall not die but LIVE and DECLARE the works of the LORD (Psalm 118:17)’!!!!! We ask “if you are willing” and Jesus responds, “I am willing.” (Luke 5:13/Matthew 8:3). I am so sorry you are suffering and going through this wretched order. Never forget that one of the worlds’ most valuable minerals (gold) will be something we merely cruise around on someday at Home. So much Love, xoxo Julianne from Heart 2 Heart

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  1. So happy to hear an update on how you are doing! Praise God for answered prayers! I will be praying that he would work a miracle in you by healing your kidneys and providing a viable bone marrow transplant! Love to you and your family!

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  2. Thank you for all the news….
    The kids are amazing and at such a fun age .
    I am so encouraged by your increase in energy.
    We are in such uncertain times, God is still on the Throne and is not worried or dismayed .
    Love you much,
    Char

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    1. Thank you Char! I hope you’re staying safe as well… being immunocompromised definitely adds a layer of severity to this whole situation, but you’re right. God is not surprised or worried. Love you!

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  3. I thought Marian’s hair looked different in the hiking picture!! Nice!

    I had also been wondering about blood supply and if that was affecting you. Do you know if we can specify donations to go to you if we are A+?? I was looking on line at what measures the Red Cross is taking to make donating “safe”, but I guess it will come down to the local facility. I see we have to call ahead and set up an appointment.

    I am praying still for miraculous healing of those kidneys… And that God will keep you around to meet your grandchildren.

    Stay safe, don’t touch the front of your face masks when you go out, and wash your hands before putting on and taking off…the contaminants will be on the exterior portions. Guess who was required to see several Computer Based Trainings on donning and doffing PPE (Personal Protective Equipment) for healthcare workers when I got back to work this week?!?! No cases in Portage County – yet – at least of symptomatic people, but in Italy they found that 3 out of 4 positive cases were asymptomatic!! So all this social distancing really is important!!

    Many, many, many continue to pray for you… The pastor in Cartagena, Colombia where we did the medical missions trips pray for you regularly.

    Oh God in Heaven, please be willing!!

    Mom

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  4. Heidi, I don’t know if you remember me (we spent a brief time together in Alaska), but I’m inspired by you and your faith through this journey. May God continue to do a good work in you and your life. Sending lots of prayers up for you and your beautiful family.

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    1. Of course I remember you! You were always an inspiration to me in motherhood… Thank you for your prayers. It means a lot to have people of faith interceding on my behalf. Much love to you and your family!

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  5. I pray for you often, Heidi. God is the Ultimate Healer and I pray He is willing and your story becomes a testimony of His Power. Sending you lots of love and strength friend!

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  6. So glad to see you doing well! Dialysis at home sounds AWESOME. So glad to hear that!

    Mathias and I were actually just talking about donating blood yesterday. This post gave me an extra push to do it!

    Sending love and prayers,
    Grace, Mathias, Noah and Elias

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  7. Thank you for sharing this special moments.
    It’s so marvelous to see you and your family trying to live a normal life, enjoying nature and the time together. That’s a great miracle. And you look so beautiful.

    We go on praying for you. Though we don’t understand so many things. But our Lord loves especially the suffering ones, suffering with them. So we pray that you might feel his presence in a very special way.
    We send you a lot of love from Spain
    Andy and Conny

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  8. So thankful for the update, praying God will speak those kidneys back into functioning! He loves you! I pray your time is sweet in the midst of uncertainty! Xoxo

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      1. Hi Heidi,

        I’m a friend of your parents. I’m in nursing school and our clinicals were put online due to the pandemic so we are unable to have patient interactions right now. Reading your blog is helping to remind me of why I am in nursing school!

        Praying 🙏

        Lauren

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  9. Blessings to you, dear Heide. When I feel tempted to feel sorry for myself, I think of how you find joy in the midst of all you are experiencing and you inspire me to press on, look for things to be grateful for, and to pray. You are an ongoing testament to God’s grace and love. I just wish that it didn’t have to come in the midst of such difficulty.

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    1. Thank you for your kind words… I wish we didn’t have to go through difficult times… Looking back to my time in California it was such a sweet season. Our church family and the ladies as H to H will forever be in my heart. Much love to you!

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  10. Hi Heidi! It was great reading YOUR words! You have kept your unique sense of humor which is good medicine. You are in my thoughts and prayers A LOT!!
    I, too, pray that God would just look upon you with favor and heal those kidneys so things would be less complicated for a bm transplant . Thanks for all the photos of your family! You are great!
    Love, Vicki D.

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  11. What a gorgeous family you have–they got good genes! We continue to pray for you often. We know that God is listening and answering. And we know He loves you like nobody’s business!

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