March 28, 2019

The last few days have been very rough… until yesterday. Yesterday was a good day.

Yesterday, my sister was able to take me on a stroll through the hospital. It felt like flying! I hadn’t been down for so long… It was a real treat. We laughed and enjoyed it to the max.

What happened?

My kidneys stopped doing their job for too long.

Kidneys are so important it turns out… I was flooded with extra fluid (30 lbs worth), and had a very hard time breathing. My lungs were sponges, soaking in a vat, unable to get much air in and out, especially if I tried to recline. Or laugh. Or talk in full sentences. In came dialysis.

Sadly, in between feeling like a water-balloon and feeling great from dialysis, there was the worst experience- having the dialysis line placed. I had to lay back to a certain angle and hold still… they would have put the line in my neck, but I couldn’t lay flat enough. They went for the hip, putting the line in my femoral artery. I couldn’t stop sputtering, gasping, and coughing up a bloody swamp. There was a CPAP machine (up until that moment Papsee had been my friend, helping me sleep and breathe at night), there was panic, the room was hot, everyone was moving too slowly, and I was drowning. As the Dr. pointed out later, I wasn’t actually drowning- but the feeling was there.

Mike wore both out wedding rings until my fingers deflated

Will I need dialysis for life?

Since my kidneys were fine before this all started, and I’m young, the doctors are expecting them to recover, and for dialysis to be short lived. That being said, tomorrow they will put a more permanent dialysis line in my neck and remove the one from my hip. Today I even heard the words “Out patient…” Hopefully early next week I can go home and only need outpatient care.

Wedding ring back on- getting dialed. That’s my blood in the tubes.

What about the cancer treatment?

Vyxeos has done its month long chemo-course destroying the marrow. My white blood cell counts are on their way back, and the platelets and red blood cells are rebuilding as well. My last bone marrow biopsy was inconclusive as to whether the blasts are setting up shop again or not, so our best bet on knowing if we can move forward with transplant, is to wait and watch the blood numbers return. The better my numbers of white cells, platelets and hemoglobin, the fewer blast are in the marrow. In a few weeks there will be another biopsy to be sure…. But, before we can go back to dealing with cancer my kidneys must kick in again!!


How are the kids?

Marian with a mask like mom

The kids’ spring break has been a full of activity. Our things from California have been finding their place in the new house, and old toys have been rediscovered. My wonderful family has been keeping the kids busy with trips to the park, library, zoo, gym, etc.

I haven’t had the chance to see the kids face to face as much because of the intensity of my discomfort as well as some coughing on their part. Right before the kidney situation, however, I got a window into James and Liam’s thoughts. Liam- as he sits next to the hospital bed coloring a picture for me: “Mommy, I’m going to make you a picture that is so good… SO GOOD… it’s going to make you better.” I wish it worked that way. He wishes there’s something he could do…

Liam’s picture

On another occasion, alone with James: “Mommy I figured it out!! I think you got cancer because you had so many babies!” He was so excited. To this I said: “That’s an interesting idea, but not how it works. Babies can make their mom sick sometimes, but that is not what happens in cancer… Babies can hurt mommies just like a rock can hit you and hurt you… but this cancer- it’s from my own cells. I’ve had it written into the seeds of what made me. There’s nothing you or your siblings have done to cause this!!!!” He left. And I cried.

My sweet, sweet boys.

Please pray…

  • That our home would be a haven of peace for the kids- and everyone who comes through to help or visit- a place of rest and joy despite of the circumstances.
  • For my kidneys to heal quickly!
  • For my eye to heal (yep, that’s still a thing… there’s a blind spot in my left eye that makes it very hard to see screens and depth.)
  • That I somehow make it out of this with NO repercussions… a cancer free, side effect free, medication free life!

12 thoughts

  1. Excellent writing….. I have seen the issues you are describing in my own family of kidney disease.
    I was so praying the line needed and then dialysis would be smooth. But looking ahead, dialysis is and will be a much needed relief….to give the kidneys a chance to rest.
    I am so sorry you went thru all this to get the line placed, but it worked! You have great doctors! The kids are trying to figure this out -and fix and protect Mommy. What sensitive and smart boys you all are raising…..

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  2. You’re magical. I love you, your words, your heart, your mind and your whole family. Whoever wrote this stuff into your seeds needs remedial writing—their writing is a real vat of garbage. But those seeds that made you are some of the most beautiful ever.

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  3. Hoping and praying that your kidneys recover fast. I have seen kidney disease in my family. My dad had it. I just hope you don’t have to go through this.

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  4. Oh dear, Heidi. I am praying mightily for a complete recovery. In the meantime, I am praying for you to experience the peace and comfort that only Christ can give. You are so loved, dear one.

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  5. As I sit waiting for Troy at the prevea cancer center, my heart and prayers are for you Heidi. As savage as chemo is to your body and Troy’s, I hold on to Christ and God the Father s 💓

    Please know we wish you and Mike strength and peace. Daily my thoughts run to you and your young family.

    Thanks for sharing this way and giving me courage to support my husband’s colon health.

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  6. This so touched my heart especially Liam’s and James perspective on your illness. Such sweet honest responses.
    We will be praying for all that you need to arrive to the day you can get the bone marrow transplant.
    You did go through a harrowing week. “ Though you walked through the valley of the shadow of death the Lord was with you” and many other people praying for you.
    Love you Heidi!
    Vicki

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  7. Dear Heidi,
    Thank you so much for sharing your hard moments with us.
    I don’t know if you can remember Andy and me with our four children working as missionaries in Spain. Your whole family helped us a lot in concerts and in the children choir in Valencia (I think you’ve been about ten years old). Well we remember you very well. ☺️

    I jut wanted to say that we are praying for you and it is so good to read about all your struggles, also the good moments and how the Lord takes you through everything. It’s so encouraging how God is blessing you in midst of the hurricane. I think that’s the greatest thing ever that can happen.
    We pray that you feel the presence of your Lord Jesus really close to you just in the minutes when the pains seems to be eternal. And that you always can be sure that He is also with your kids and your husband. May the Lord surround you with his loving care and comfort you.
    A huge hug from Andy and Conny from Spain

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  8. So good to see you feeling well enough to to write or have someone write this blog update! We are praying that the permanent line for dialysis is not going to be needed much, and that your kidneys recover. Praying for some time at home in the next few days , and rest after the trying week!
    Love to you all Sue and Cliff

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  9. It looks like God is sustaining in such a time as this! The family involvement and support is beautiful just beautiful!
    Wanted to remind you as Im certain you know people are praying for you all over the world! Even a BSF class in IN because Sue has shared her love for you!
    Your blog reminds me of an article which John Piper wrote about God doesn’t waste either😷 God uphold you with His righteous right hand!

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