Brandon's Leukemia Journey
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Life as we have known it has completely changed! In an instant our whole world has come to a stop. Our oldest son Brandon, 26; who suffers with development delays, autism and schizoaffective bipolar disorder, received news that he has leukemia. Brandon is typically a well-mannered young man, that has a huge heart and willing to help where and when needed. Now, we need YOUR help!
On February 2nd, we received devastating news that Brandon has an aggressive Acute Lymphoblastic Leukemia (T-ALL). He was immediately admitted to our local hospital and within a few hours was transferred to Orlando's Best Oncology Center. Upon admittance Brandon spiraled down fast; (it was a Saturday morning about 2 am) so weekend staff had to wait until Monday before anything could really be determined and treatment could begin. His white blood cell count was 130,000 (normal WBC is 10,000), he was in horrible pain, delusional, and could barely walk. The hospitals main goal at this point was to make him comfortable.
By Monday February 5th, we had the confirmed diagnoses of T-ALL; he had already received 4 PRBC (Packed Red Blood Cells) Transfusions and 3 Platelet transfusions. At this point we knew chemo would be required but didn't know much other than that. Some of the daily medications that Brandon was on - needed to be tapered down and stopped (very quickly) to start the chemo therapy, along with a Hickman port and first bone marrow biopsy needed to be done. Hickman port (or catheter) is a central line that is surgically placed the tubing is tunneled under the skin and inserted into subclavian vein. Both the Hickman port and bone marrow biopsy needed to be completed while Brandon was sedated because both procedures are extremely painful. Both procedures where done on Tuesday the 6th and we waiting for additional results so that they could start the treatments.
Currently (Day 14), Brandon’s treatment is Hyper CVAD chemo therapy (4 rounds; each round has 2 parts). His first stay in the hospital will hopefully be his longest (at just over a month); however, because there is no guarantee on how is body will respond to chemo and whether his numbers will return to a safe level (to be released) we won’t know for sure until they discharge him. From there he will require daily visits for blood work to Oncology Center in Orlando and daily care when at home. His additional treatments (7) will consist of hospital stay of 2-4 weeks (again depending on how his body reacts to the treatment, and pending there is no infections). There has also been speculation that Brandon may need a bone marrow transplant (but we will not know for a few months), and that will also require a matched donor and additional treatments and procedures.
For those that are unaware Leukemia is a cancer of the blood; meaning it is all over the body so radiation is not typically used as treatment. Unlike other cancers, there are no “stages” a patient will either have leukemia or be in remission. Remission in this case simply means “no active cancer cells,” however in between each treatment Brandon will be monitored to see if the white blood cells that are growing back are “good” or “bad”. Good is... well good; bad is more cancer and the doctors will then have to find another treatment. There is also a chance that this can reoccur, even after remission ☹ There are so many unknowns and what if’s that it is scary. Brandon is currently receiving either a blood transfusion or platelets (and in some cases, both) each day.
Doctors are optimistic and hopeful that Brandon will make a full recovery; however, he will remain on an aggressive chemotherapy treatment plan for the next 7-8 months, with possibility of long term chemotherapy. Some loads that we must bear are to difficult to do alone and we must reach out for help; we humbly ask for donations of any amount and are greatly appreciative of anything you can give. All donations will go towards medical expenses (current and future), travel expenses, therapies, and any unforeseen expenses that we will incur.
Please continue to pray for Brandon and our family <3, as well as those that are caring for Brandon. This is going to be a long road with no definitive outcome.
2 Corinthians 5:7 "For we walk by faith, not by sight"
Please feel free to follow our journey on FaceBook:
https://www.facebook.com/brandonsleukemiajourney/
On February 2nd, we received devastating news that Brandon has an aggressive Acute Lymphoblastic Leukemia (T-ALL). He was immediately admitted to our local hospital and within a few hours was transferred to Orlando's Best Oncology Center. Upon admittance Brandon spiraled down fast; (it was a Saturday morning about 2 am) so weekend staff had to wait until Monday before anything could really be determined and treatment could begin. His white blood cell count was 130,000 (normal WBC is 10,000), he was in horrible pain, delusional, and could barely walk. The hospitals main goal at this point was to make him comfortable.
By Monday February 5th, we had the confirmed diagnoses of T-ALL; he had already received 4 PRBC (Packed Red Blood Cells) Transfusions and 3 Platelet transfusions. At this point we knew chemo would be required but didn't know much other than that. Some of the daily medications that Brandon was on - needed to be tapered down and stopped (very quickly) to start the chemo therapy, along with a Hickman port and first bone marrow biopsy needed to be done. Hickman port (or catheter) is a central line that is surgically placed the tubing is tunneled under the skin and inserted into subclavian vein. Both the Hickman port and bone marrow biopsy needed to be completed while Brandon was sedated because both procedures are extremely painful. Both procedures where done on Tuesday the 6th and we waiting for additional results so that they could start the treatments.
Currently (Day 14), Brandon’s treatment is Hyper CVAD chemo therapy (4 rounds; each round has 2 parts). His first stay in the hospital will hopefully be his longest (at just over a month); however, because there is no guarantee on how is body will respond to chemo and whether his numbers will return to a safe level (to be released) we won’t know for sure until they discharge him. From there he will require daily visits for blood work to Oncology Center in Orlando and daily care when at home. His additional treatments (7) will consist of hospital stay of 2-4 weeks (again depending on how his body reacts to the treatment, and pending there is no infections). There has also been speculation that Brandon may need a bone marrow transplant (but we will not know for a few months), and that will also require a matched donor and additional treatments and procedures.
For those that are unaware Leukemia is a cancer of the blood; meaning it is all over the body so radiation is not typically used as treatment. Unlike other cancers, there are no “stages” a patient will either have leukemia or be in remission. Remission in this case simply means “no active cancer cells,” however in between each treatment Brandon will be monitored to see if the white blood cells that are growing back are “good” or “bad”. Good is... well good; bad is more cancer and the doctors will then have to find another treatment. There is also a chance that this can reoccur, even after remission ☹ There are so many unknowns and what if’s that it is scary. Brandon is currently receiving either a blood transfusion or platelets (and in some cases, both) each day.
Doctors are optimistic and hopeful that Brandon will make a full recovery; however, he will remain on an aggressive chemotherapy treatment plan for the next 7-8 months, with possibility of long term chemotherapy. Some loads that we must bear are to difficult to do alone and we must reach out for help; we humbly ask for donations of any amount and are greatly appreciative of anything you can give. All donations will go towards medical expenses (current and future), travel expenses, therapies, and any unforeseen expenses that we will incur.
Please continue to pray for Brandon and our family <3, as well as those that are caring for Brandon. This is going to be a long road with no definitive outcome.
2 Corinthians 5:7 "For we walk by faith, not by sight"
Please feel free to follow our journey on FaceBook:
https://www.facebook.com/brandonsleukemiajourney/
Organizer
Jessica DeMoss
Organizer
Kissimmee, FL
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