Carry the Fire

 Sometimes we just don't get the answers we were wanting, but that doesn't mean God has left us for one moment or that He isn't working to bring about healing in a way we didn't expect. 

Kurt had his followup appointment to go over the results of the biopsy on day 29 of induction. Unfortunately, there was some residual residual leukemia in the bone marrow. The more interesting information regarding the biopsy was that the oncologist realized that these cancer cells have a "rearrangement" called MYC 8. This is a translocation within the cancer cells that can make them more aggressive and more prone to relapse. We didn't see this initially because it takes some super sensitive testing to look for it. The good thing is that the first biopsy to show the MYC 8 noted 12.5% and that number dropped to 1% with treatment. It did respond to chemo, but more is needed. Because of the presence of MYC, the course of Kurt's treatment will be pretty altered from what we thought. Instead of three years of chemo, attempting to avoid a transplant. He will now be on a transplant track. 

Next Wednesday, Kurt will be admitted to start what will be 4 rounds of different and a bit more intense chemo called Hyper CVAD. The cycles of chemo are classified into A and B. We were told the B cycles are "harder" than the A. For the first cycle, Kurt will need to remain inpatient for 14-21 days. They need to see how he reacts to the new drugs and monitor him more closely. His discharge date will depend on how quickly his counts recover (a quicker recovery means discharge closer to 14 days). They will also be be able to give him medicines to help his counts recover with these chemo cycles. For the remaining 3 cycles, he will probably be inpatient for 5(ish) days and then home through the treatment and recovery. Of course, hospital stays and being able to remain home depend on a lot of things, but we are praying he can be home as much as possible! The cycles will progress A, B, A, B. 

The goal of the Hyper CVAD is to get him into remission. The oncologist said she expects him to be in remission after two rounds...possibly after the first. There are also other drugs specific to B-Cell ALL they can use to get remission too, if these were to fail. As of now, Kurt won't be participating in the drug trial but the good news is that the drug in the study (inotuzumab) is something he can still take if needed. 

Following the 4 cycles of Hyper CVAD, Kurt will move forward with a stem cell transplant. We don't know much details about this, as the transplant coordinator will meet with us next week. Thankfully, he has 4 amazing siblings who will go through the process to find out of they are a match. His best chances at a match come from siblings! They told us usually 1 out of 4 siblings are a great match, so we are praying one of them will be as perfect of a match as we could dream of! We don't have a firm timeline, but the oncologist mentioned the possibility of transplant around December/January. 

So many things change quickly, so I am sure some of this could be revised in the future. We are still processing all this information and still have a lot of research and learning to do. It isn't what we wanted or expected to hear, but we are trusting that God is leading us down this path for a purpose. We believe that purpose is healing. I was so encouraged when I read the story of another B-Cell ALL patient who had a transplant at 41 and is now 71 years old! There are lots of risks with transplant and it certainly is the "scarier" thing we had hoped to avoid, but it also affords a chance at a cure.  

The coming days are going to be stressful and long. We will be in for an intense phase of treatment and transplant until the beginning of 2021, but we know God will carry us through. One of the first things I thought was that we have so much help! Friends and family have seen us through this first phase, and we know we will continue to have that support going forward. We are so very thankful! I can't even express the joy that springs up in my heart when I think about each gesture of love. 

Please continue to pray for Kurt. Pray that the treatments will work perfectly and that he will achieve the highest degree of remission. Please pray for his body, as he endures the treatments, and that he will retain his joy that has been unquenchable so far. Pray that we can find a perfect match for the transplant and that all will go smoothly in preparation for that process. Continue to pray for our children: each has dealt with anxiety and grief in different ways, but it as been especially hard for Hazel. Please pray that my own chronic health issues will remain in control and that I can be there to help and support Kurt. Pray we fix our eyes on Jesus and continue to trust Him. He has made a way for us so many times when there seemed to be no way--from adoption, to my own health issues, to Leukemia and we know He will continue to do so. 

One song that I have had on repeat during this time is Andrew Peterson's "Carry the Fire." One section of the lyrics say, 

I will hold your hand love

As long as I can, love

Though the powers rise against us
Though your fears assail you
And your body may fail you
There's a fire that burns within us

And we dream in the night
Of a city descending
With the sun in the center
And a peace unending

I will carry the fire for you

https://youtu.be/hahX10ofNYY

We will continue to carry the fire, trusting in Christ and His Kingdom--trusting in Him for earthly healing from Leukemia. 

Ways to help...

     Several people have asked for ways to help our family during Kurt's Leukemia treatment. Since I know there are several people who read the blog and are not on Facebook, I wanted to share that information here. 

If you are on Facebook, our small group has created a Facebook group called, "Ministry to Serve Johnson Family (Kurt and Priscilla). https://www.facebook.com/groups/669261783799732

In that group the following ways to help have been created/shared: 

Amazon Wish List for household needs and encouragement for the children:

https://www.amazon.com/hz/wishlist/ls/8VIHTFQSIF2G?ref_=wl_share&fbclid=IwAR0K9J8DO98xpORZY4cu1WTF4NhMHsxV1apZH-21ANMDpEKpFRIEDQSTpi0

Meal Train Signup: 

https://www.mealtrain.com/trains/mnv61l?fbclid=IwAR29ZMtESA9Gr2py--2GhgV3SULTXEZ7ohjitqipG9DQKcUf1r6srX9asVM

Sign up for ministry to the children: 

https://www.signupgenius.com/go/20f0d45abaf28a4f49-johnson

Go Fund Me for Medical Expenses: 

https://www.gofundme.com/f/xu5g5-kicking-cancer-where-it-hurts?utm_medium=sms&utm_source=product&utm_campaign=p_susi-sms-welcome&fbclid=IwAR0hkcV6oRqJGkwGWCwg2v2he5q7AL76icrHGungN0zQONBuDxeHI_KSpjw

Friends and family have been such a blessing to us! Mabelle told me recently, "So many people must love us and want to cheer us up while Dad is getting better." We have felt so loved. Above all, we appreciate your prayers most of all. Thank you for supporting us during these difficult days. 

Weary Feet and Gospel Comfort

     Yesterday, Kurt reached a milestone in Induction: he received his last PICC line chemo drugs for this phase! The photo above shows him getting the Daunorubicin. As you can see, this med is a red/pink color. We are now in the home stretch! Baring infection or any hiccups, Kurt should be discharged on Wednesday (9/9) after a bone marrow biopsy and spinal Methotrexate. 

    On Sunday, September 6th, we will be having a day of prayer for Kurt, as we approach that important biopsy day. People from our church small group and church staff have committed to pray from 8AM-8PM on Sunday. We would love to have as many people involved in this as possible. You can commit to pray on our Facebook group. I know it will be such an encouragement to our family to see prayer times being shared there. 

https://www.facebook.com/groups/669261783799732/685855495473694/?comment_id=685872635471980&notif_id=1598991075208562&notif_t=group_comment&ref=notif

     We are praying for two things specifically: 

-The biopsy on September 9th will show that Kurt is in remission with no minimal residual disease shown. 

-That Kurt will stay in remission permanently!

    

    Our family had a bit of a rough start to the week, but we saw God work mightily through these situations to bring comfort and care. On Sunday, our sweet poodle, Mattie, passed away. She was 17 years old and, while we expected her life to end sooner than later, her passing came at a hard time for each of us. We lost our westie, Alistair, in June. He battled lymphoma for 1.5 years. The day after Kurt was admitted to the hospital, Mattie saw the vet and they suspected she had some type of cancer. The vet gave her about a month to live. While we hoped she would make it until Kurt got home, her condition worsened rapidly. I cannot yet divulge all the details of the day, but God worked out each moment for us in such a loving way. Mattie passed peacefully at home with the help of Lap of Love and Dr. Kendra Healy (as Alistair did) and is now resting beside her brother at my parents' farm. We will miss her greatly. She was the most lovable dog and had the biggest personality. For her gravestone, we chose to write this: "She found the family who needed her the most." She found us as a stray 14 years ago, and we are thankful for each day we had with her. 

        On Tuesday afternoon, we got a call from Kurt's parents saying that Max had fallen and cut his forehead on a table in our house. While the cut wasn't large, it did looked deep. Our immediate fear was that we would be forced to take him to the ER for care and be exposed to all those germs right before Kurt was scheduled to be discharged. After about an hour spent on the phone talking with nurse and doctor friends, we were able to make some arrangements so that Max got three beautiful stitches at home! What a huge answer to prayer! Because of this, I was able to continue to stay with Kurt at the hospital, grandparents and our children didn't have to risk COVID exposure and potentially compromise Kurt's care at home, and Max was taken care of. He was very brave and only cried out once when the wound was cleaned. He is doing well and I think he enjoyed all the attention and fuss from his sisters too! 

Iron Man pjs and 3 stitches above the left eyebrow

    God sees our needs, knows our prayers before we can even utter them, and it has been amazing to see how He is continually working for our good, even when a fallen world threatens us with all sorts of problems. It seems as though we have had "one hard thing after another" but on the flip side, we have also had one good thing after another. When I have an eternal, gospel perspective, I am able to see all the blessings and God's goodness more clearly, then when I turn inward and focus on my own discomfort and woes. God is with us in our grief. Having experienced grief and physical discomfort more fully than anyone else, Jesus is able to meet us and comfort us as we walk these tough valleys of life. Each day really is filled with His mercies and grace anew. It is a powerful thing when He moves mountains and we can see Him working. We know He always is, but the glimpses we get into that work spur us on for the days ahead. In the midst of all the hard things over the last few months, He has also filled us up with joy and peace that cannot be disturbed. Today, we pick up our weary and dusty feet and continue onward with renewed strength and hope in Him.