On the Road Again

By Juraj Koska

First, we would love to express our most humble gratitude for all donations, prayers and well wishes. The support was overwhelming, and we felt an outpouring of God’s love working through human instruments. We would like to thank the amazing “COTA for Jeep Strong” supporting team and all volunteers for their time, resources, and talents to help reaching the fundraising goal. The money raised should cover all current and near future Thomas’ medical expenses for the family and provide sufficient funds for himself later on once he is on his own. The date the goal was reached, March 5th, coincided with Thomas’ discharge from the hospital. It was 6 weeks and one day after the admission (January 23rd) and on day 32 after the transplant.

The last two weeks in the hospital, Thomas’ doctors were concerned about the “awakening” of the cytomegalovirus and the severe side effect of the medication they used against it. Indeed, it was very hard on the stomach and his kidney tests were getting worse. Thank God, the very first virus test after 5 days on treatment came out negative. Because of worsening of kidney function, the doctors decided to stop the drug even before getting the second negative test. That came on Friday, March 1st, triggering the discharge talks for next week. That included “shadowing” days for both the parents and Thomas, telling the nurse the time and the name for each medication. The list was quite long. On Monday, March 3rd, Thomas had a bone marrow biopsy to confirm that all the encouraging counts in his blood were due to precursors from the donor and that the leukemia was not present. By Wednesday we had some preliminary result that this may be the case. We were ready to go, packed up expressly all snacks, dishes, electronic gadgets, books, devotionals, pillow, and clothes. There was only one pharmacy in the entire Phoenix area carrying a liquid formula of Tacrolimus – a medication needed to keep the new immune cells from the donor from attacking Thomas’ own cells. It took two 30-mile trips to finally get it as insurance bureaucrats took their time.

Back in the hospital, the ward staff gathered to bid farewell to Thomas. They convinced him to pick out his walking away song. He chose Willie Nelson’s “On the road again.” Over the week all, the day and night nurses and other personnel wrote a short note for him. The collage was handed to him on the way out. And so, he walked out and was “in the home again”. We were still on a long road ahead, with two appointments a week, and overnight IV fluid infusions at home as the tacrolimus is causing body magnesium losses. The blood counts continued getting better, with red cells and platelets joining the white ones. We got confirmation that the bone marrow was indeed 100% donor. Last week, Thomas hit the roads with some jogs, starting at a half mile and getting to about a mile by now. His doctor was so pleased with the progress that they went down to one appointment a week from now on. Sometime during the Easter week, there will be another bone marrow biopsy, and if everything goes well, they may wean off the tacrolimus. The road back to Alabama this August is becoming more realistic than thought.

On a side note, Thomas’ high school record for 1,600m lasted less than two years. Kudos to Jonah for working hard and continuing the Gladiators distance dynasty.

3 thoughts on “On the Road Again

  1. There are so many miracles detailed here. We are beyond grateful to God. And to all the saints who prayed, to the fine team at PCH, and to the community of loving people who have surrounded you all. We continue to support you in prayer and the dearest friendship we have, and in love. Go Thomas!!

  2. Praise God 🙌 So glad he’s home and will continue to pray for complete healing and restoration! Stay strong Thomas we love you 🥰

  3. Glad that everything is going so well for you, Tomas! Glad to have spent some time with you at home visits. Hope to continue with these visits till you return to school.

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