Gary Johansen

First post: Oct 5, 2019 Latest post: Oct 24, 2020
Gary was diagnosed with Myelofibrosis in March 2019. Myelofibrosis is an uncommon bone marrow cancer which disrupts cell creation and causes scarring within the bone marrow. The only cure for Myelofibrosis is a stem cell transplant. 

The donor search began late spring. In early summer we were told that were 27 people that were potential matches. Of the top 5, 3 were immediately out of the running. In mid August we were told he had two 9/10 matches (one in the US and one in Europe, both 24 years old) and a transplant date of October 3rd was scheduled.  On August 26th, we received a phone call stating that the two donors lined up were too risky and they wouldn’t be moving forward with them. The next option was to have Gary’s children tested. 

On August 27th, Trina began the donor testing process. Two weeks later we learned she was the confirmed donor (a 5/10 haploidentical match). In September, Gary had well over 50 medical appointments at Seattle Cancer Care Alliance in preparation for his allogenic transplant. On September 25th he had his Hickman line placed, this is a line on his chest that routes through a vein and ends near his heart. This line is used to administer chemo,  draw blood, for medications, transfusions and in future nutrition when he’s not able to keep up with his dietary needs on his own. 

Conditioning schedule -
9/27 -  two forms of chemotherapy on the same day (melphalan and fluderabine) and 4.5 hours of hydration (to help his kidneys handle the chemo)
9/28 - 9/30 another round of fluderabine and hydration daily 
10/1 - 2 rounds of radiation (TBI - total body irradiation)

On September 27th( day -6) conditioning began. After the first day Gary became very sick overnight and was put on an anti-nausea regimen every 2-3 hours around the clock. The anti-nausea meds made him extremely tired and he began sleeping the majority of each day. On Sunday 9/29, he had a red blood cell transfusion as his hematocrit dropped lower than the desired level. He had another red blood cell transfusion on 9/30, as the first transfusion did not bring his hematocrit above the threshold. 
On September 28th, Trina began growth factor shots daily to increase her cell production leading up to the cell collection.  She received these shots until 10/3. On October 1st Trina had a mahurkar line placed in her vein near her neck. On October 2nd, she had her first round of collection which lasted around 5 hours due to some issues with the collection machine and issues with her line. She found out later that evening that additional day of collection would be required on October 3rd to reach the number of targeted cells needed for Gary’s transplant. 

Day 0 (transplant day) finally arrived. Please follow along the journal entries for the updates in the coming days/weeks/months ahead. 

Thank you to all of our family and friends for all of the support during this life changing process. We couldn’t give him the help and energy he deserves from us without all of the assistance we are receiving. We are also incredibly thankful for the amazing care we are receiving from SCCA, everyone there has been lovely. Thank you for all of the love and the prayers during this time. Please keep them coming, it’s going to be a long process.  💗🙏🏻🎗

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