Update About Brandon’s Treatment (12/10/16)

Hey everyone! I just wanted to share some news about Brandon’s treatment.

Yesterday, Brandon completed the first month of his new leukemia treatment! So far he seems to be responding to the treatment, but it’s a slow process. We know that Brandon is not in remission due to the presence of blast (leukemia) cells in his blood, however, Brandon’s doctor feels that the treatment is working because his disease has not been rapidly progressing. Without effective treatment, Brandon’s leukemia progresses very quickly and is expressed through an increase of his white blood cell count in his blood. Brandon’s white blood cell count has been well within normal ranges throughout the last month that he has been on this new treatment. Brandon’s doctor is encouraged with the initial treatment results and has given us the green light to proceed with another treatment cycle! Woohoo!

Yesterday, Brandon started the first of 7 days of a chemotherapy called Vidaza. He will also been continuing with Venclexta, the oral leukemia medication. Brandon’s doctor has decided to increase the dose of the Venclexta since he has tolerated the treatment well so far. Clinical studies of Venclexta for the treatment of AML have shown a more potent anti-leukemic effect at the higher dose, so we are excited to see the results for this second month of treatment.

Venclexta has shown incredible promise for many patients with AML in combination with chemotherapy, with clinical trials showing a response rate of over 70%. Prior to starting treatment, we pursued every option to try and get Brandon into a clinical trial involving this drug so that we could get the medication for free. Unfortunately, because of some of his prior treatments he is not eligible for the clinical trial for this treatment protocol.

Since the medication is FDA approved for another condition, Brandon’s doctor got permission to use it ‘off label’ to treat Brandon’s acute myeloid leukemia. This medication is incredibly expensive since it just came on the market earlier this year, and unfortunately there are not any financial assistance programs off-label use. For the first 6 weeks of medication, we have spent about $18,000 USD. This price will increase now that Brandon is taking an increased dose.

Initially, we made the decision to start this treatment because Brandon’s leukemia doctor (and many other doctors in the department) felt that this treatment had the best chance of success. This treatment combination is not like anything Brandon’s leukemia has seen before, so they are hopeful for the results of a completely new approach. Now that we have seen its activity against Brandon’s leukemia (even at a moderate dose) we are very hopeful for another month of treatment. Thanks to the generosity and support of so many people we have been able to afford the initial cost of this medication. Thank you a million times over to everyone that has helped us fundraise or made a donation towards Brandon’s treatment. You have been and continue to be a HUGE part of savings Brandon’s life. We are so incredibly thankful.

In addition to his leukemia treatment, Brandon is still being treated for a skin infection that he developed about a month ago. Unfortunately leukemia patients are extremely susceptible to infections, especially while their immune system is increasingly compromised during treatment. Brandon has been on daily IV and oral antibiotics for about a month, which has helped his body immensely. The affected area seems to be healing, however, it is an extremely slow process with a very suppressed immune system. Brandon’s doctors continue to monitor the healing process and are keeping a watchful eye for any signs of worsening infection.

The next month will be busy for us as we continue with this week of chemotherapy, the oral leukemia treatment, and the outpatient care that Brandon needs while his body is incredibly immunosuppressed and unable to create much needed blood cells. There will undoubtedly be lots of blood work, doctor’s appointments, medication infusions, and blood transfusions over the coming weeks.

We are incredibly thankful this Christmas season for the hope of this new treatment and for the kindness and support of Brandon’s care team at MD Anderson. We are also very thankful for all the love that we continue to receive from our amazing family and friends. This year we have realized that the things we want for Christmas cannot be bought or found beneath a Christmas tree. This Christmas, we hope and pray more than ever for Brandon’s continued healing and for a future without leukemia. This road has been incredibly difficult and long, but we are forever hopeful for Brandon’s complete healing.

Thank you all so much for your continued kindness, prayers, words of encouragement, and support. We are so blessed!

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Cycle 2, Day 1 of Chemo! Can you tell we’re a bit sleepy?

Update About Brandon’s Treatment (11/30/16)

Happy (almost) December! I hope everyone is having a great start to their holiday season. I just wanted to update everyone about Brandon’s treatment.

Brandon started his new leukemia treatment about 2 weeks ago. Brandon is currently being treated with a combination of IV chemotherapy (Vidaza) and an oral leukemia medication called Venclexta. Brandon was admitted to the hospital on the 15th to start the Venclexta and to finish his week of chemotherapy.

Everything went well with starting the new medication, however Brandon developed an infection while in the hospital. This extended our hospital stay a bit, since Brandon was closely monitored and started on IV antibiotics. Thankfully, the fevers went away quickly and we were able to go home just in time for Thanksgiving!

Since Brandon’s immune system is virtually non-existent due to his treatment, he was sent home on a few IV medications (antibiotic and antifungal) that I have been administering from home. He has been recovering slowly but he is doing very well! It’s been so wonderful to be back in the comfort of our home. We are back to visiting the hospital on an outpatient basis 3 times a week for blood work and blood transfusions as needed.

Today we met with Brandon’s leukemia doctor to discuss the next steps. Brandon’s doctor is very happy with the initial results from this new treatment. Within the first week of starting Venclexta there was a drastic decrease in the number of cancer cells in Brandon’s blood. Since he still has leukemia cells circulating in his blood we know he is not yet in remission, but we are hopeful that things will continue to move in the right direction. Unfortunately, oral medications tend to work slowly so it will be some time before we know this treatment’s full effect. After a month of this treatment Brandon will likely be getting a bone marrow biopsy to evaluate the status of his leukemia. It will likely take a few cycles (28 day periods) of treatment to see any major results.

Right now its just watch and wait, which is honestly the most stressful part of this experience. We are hoping and praying that this treatment will be effective in getting Brandon back into remission and onto a second stem cell transplant. Please keep us in your thoughts and prayers as we continue with our journey.

Thank you all for your love and support. We have so much to be thankful for, especially during this Christmas season. I will continue to keep everyone updated with Brandon’s treatment.

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