Counting Down The Days

Hello Everyone!

We are counting down the days! We are 18 days from transplant, 12 days from hospital admission, and 6 days from Brandon’s pre-transplant conditioning!

Today, Brandon had a CVC (central venous catheter) placed in his chest that will be used for the duration of his transplant journey. This catheter will be used to administer medications and fluids, draw blood, and transfuse blood products including his donor’s stem cells!

We are happy to announce that Brandon was randomized for the 13 days of pre-transplant chemotherapy (rather than 20 days), which allowed him to stay on his leukemia trial for one week longer.

Brandon’s pre-transplant chemotherapy will begin next Wednesday (6/29) with a small test dose of the cornerstone chemotherapy. He will have his blood drawn every hour on the hour (for 12 hours total) to determine how his body metabolizes the medication. This will be used to calculate the exact dose that Brandon will receive once he is admitted into the hospital. Brandon will be given another dose of this medication on Thursday (6/30) as well.

Brandon will be admitted into the hospital on July 5th and the heavy conditioning will begin the following day. Brandon will receive three (very strong) different chemotherapies daily from the 6th through the 9th. Then, on July 12th, Brandon will celebrate his second birthday as he receives his donor’s stem cells.

After that, it will be a waiting game as we anxiously wait for the stem cells to engraft in his bone marrow. This usually takes occurs anywhere between 10 to 14 days after transplant. Once engrafted, the donor’s cells will start to multiply and produce new blood cells for Brandon. During this time, his blood type will start to change from O+ to A+ as more and more blood cells are being produced by the donor’s stem cells.

Once Brandon has fully engrafted and has produced a certain number of neutrophils (the most important type of white blood cell) he will be allowed to leave the hospital. Most stem cell transplant patients are usually hospitalized for the first 30 days of their transplant journey.

The first 100 days post transplant are the most crucial as the stem cells are becoming fully engrafted and starting to multiply. This is when most complications can occur such as graft failure, disease relapse, graph verses host disease (where the donor’s cells attack the recipients body), and severe infection. Please continue to keep us in your prayers, especially during this time.

Though chemotherapy works to place leukemia patients in remission, the cancer often remains in trace amounts throughout the bone marrow and usually relapses. A successful stem cell transplant is the ONLY curative treatment for leukemia. We are so hopeful that Brandon’s transplant will be a success and that he will be able to live a long and happy leukemia-free life after this is all behind us!

Thank you all so much for your continued love and support. We are here today because of your kindness!

I can’t wait to share more exciting news in the weeks and months to come!

 

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Pre-Transplant Testing

Hello Everyone!

It’s been a VERY busy few days but we are nearing the end of Brandon’s pre-transplant testing! So far Brandon has been passing all the tests with flying colors! We are very excited to be meeting with Brandon’s transplant doctor on Friday to get his final approval for transplant!

We learned on Monday that Brandon will be a part of a clinical trial for his pre-transplant conditioning chemotherapy. The trial will be testing a combination of approved chemotherapies and the timeline in which these chemotherapies are given prior to the transplant. The trial is randomized, meaning that Brandon will be randomly assigned to an ‘arm’ of the trial. One arm has 13 days of pre-transplant conditioning while the other arm has 20.

This trial has been chosen for Brandon because it is the most intensive conditioning chemotherapy that they can offer. Due the aggressive nature of his leukemia, they want to wipe out as much of his existing immune system as safely possible. Due to his age and overall good health, they feel that he will be able to tolerate this regime.

This type of chemotherapy is called ‘myeloablative’ meaning it is meant to COMPLETELY wipe out his existing immune system; so much so, that it will be unable to repair itself. The donor’s stem cells are then given as a rescue and will work to build Brandon a new immune system.

We have been through numerous clinical trials at this point; however, there is still a certain element of fear when entering the unknown. We are praying and trusting that Brandon will be randomized for whichever arm of the trial that will most benefit him. I am asking that you please keep us in your thoughts and prayers as we anxiously await this decision.

Thank you all so much for your continued love and support!

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More good news

I am extremely happy to announce that Brandon’s biopsy results from Wednesday have shown that he is STILL in remission! Furthermore, the small number of cancer cells that remain have reduced over the last 3 weeks since his last biopsy!

We are SO excited for this news! Brandon’s doctors continue to be amazed by his success. To go through so many failed treatments and then to have one work this well is extremely rare. Brandon has become the poster boy for this trial, being the FIRST person that will go on to receive a stem cell transplant after successful treatment (he was only the 5th person enrolled in the trial). Due to his toleration of the treatment, he has also exhibited some of the most dramatic reduction in blast (cancer) cells. 

Next Monday, Brandon will be starting his pre-transplant testing. Monday through Friday will be filled with a multitude of tests to screen for possible transplant complications. Once he has been cleared for transplant, he will be signing consent forms for the procedure.

In just a few short weeks he will start his pre-transplant conditioning, which will be an extremely harsh round of chemotherapy designed to completely wipe out his bone marrow of all stem cells. Then, on July 12th he will be receiving an infusion of his donor’s stem cells that will engraft and grow him a new cancer-free immune system!

There are so many hurdles on the horizon, but we continue to be positive and keep pushing forward. Looking back, I can’t believe how far we have come in the last 10 months.

Thank you all for your constant love and support. We wouldn’t be here without you! ❤️

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