Dear Donor,
We have been told YOU have been found, YOU are the perfect match for my boy and YOU have agreed to give him bone marrow (no peripheral blood, actual bone marrow extracted from your hip where you will undergo a day stay surgery and have soreness for a few days after) . All we know about you is that you are 29 years old, a male and do not live in our country. You will be taking time out of YOUR daily life to help save my boy. That is the most selfless act any person can do. We are grateful and can not wait for the day we can meet you. Thanking you will NEVER be enough. NEVER.
We are one step closer now to having transplant. My boy worked and fought LONG and HARD these past few weeks. You see, the chemotherapy wasn't doing the job it was supposed to. The chemo was recognizing his cancer cells and saying "Screw you, we've seen this before!" So, my boy was lucky enough to be fit for a trial where they used a new immunotherapy drug called, blinatumomab. He had a surgery to have a broviac double lumen central line placed in his chest. He had an allergic reaction to the CHG wash prior to surgery. He had 3 cyto "storms" where the drug attacked the leukemia cells and killed them. He had high fevers, body shakes and felt really, really crummy. He was inpatient 11 days during that. Finally, he could go home and be with his family and new baby sister. He still had his meds infusing, he wore a backpack with a pump and the IV bag for 28 days. He had his bone marrow test and we got the results we were praying for -- MRD NEGATIVE. No disease in his marrow. So, he had a week of rest and we restarted the immunotherapy again. We met with his bone marrow transplant team and toured where he will be staying for 60 days.
This week he finished his immunotherapy for the second month. We got the dates of admit and actual bone marrow transplant. He will be admitted on July 20th and his transplant will be July 28th. Your cells will fly internationally to him... we think that's pretty neat. They will fly over the Atlantic Ocean.
The next two weeks consist of a bunch of doctors appointments to prepare him for transplant. He is getting checked out literally from head to toe with CT scans, X-rays, 24 hour specimen catches and tons of testing to ensure he's ready for transplant. Busy doesn't even describe it. We're also trying to fit in some family fun since he will be inpatient for 40-60 days minimum following transplant.
So for the next few weeks we are busy with appointments, but squeezing in fun as much as we can, all while keeping him healthy and germ free.
Caleb's Mom
We have been told YOU have been found, YOU are the perfect match for my boy and YOU have agreed to give him bone marrow (no peripheral blood, actual bone marrow extracted from your hip where you will undergo a day stay surgery and have soreness for a few days after) . All we know about you is that you are 29 years old, a male and do not live in our country. You will be taking time out of YOUR daily life to help save my boy. That is the most selfless act any person can do. We are grateful and can not wait for the day we can meet you. Thanking you will NEVER be enough. NEVER.
We are one step closer now to having transplant. My boy worked and fought LONG and HARD these past few weeks. You see, the chemotherapy wasn't doing the job it was supposed to. The chemo was recognizing his cancer cells and saying "Screw you, we've seen this before!" So, my boy was lucky enough to be fit for a trial where they used a new immunotherapy drug called, blinatumomab. He had a surgery to have a broviac double lumen central line placed in his chest. He had an allergic reaction to the CHG wash prior to surgery. He had 3 cyto "storms" where the drug attacked the leukemia cells and killed them. He had high fevers, body shakes and felt really, really crummy. He was inpatient 11 days during that. Finally, he could go home and be with his family and new baby sister. He still had his meds infusing, he wore a backpack with a pump and the IV bag for 28 days. He had his bone marrow test and we got the results we were praying for -- MRD NEGATIVE. No disease in his marrow. So, he had a week of rest and we restarted the immunotherapy again. We met with his bone marrow transplant team and toured where he will be staying for 60 days.
This week he finished his immunotherapy for the second month. We got the dates of admit and actual bone marrow transplant. He will be admitted on July 20th and his transplant will be July 28th. Your cells will fly internationally to him... we think that's pretty neat. They will fly over the Atlantic Ocean.
The next two weeks consist of a bunch of doctors appointments to prepare him for transplant. He is getting checked out literally from head to toe with CT scans, X-rays, 24 hour specimen catches and tons of testing to ensure he's ready for transplant. Busy doesn't even describe it. We're also trying to fit in some family fun since he will be inpatient for 40-60 days minimum following transplant.
So for the next few weeks we are busy with appointments, but squeezing in fun as much as we can, all while keeping him healthy and germ free.
Caleb's Mom
During his first two cytostorms I was inpatient giving birth to his sister. We were thankful for technology so he could talk to me. He was very emotional and not feeling right.
During a cytostorm. Temps reaching 103 and body shakes.
Runway to Hope Event with Howie Dorough from BSB and Nikki Bella, WWE.
During his 11 night stay at APH.
The start of a cytostorm.
First ever Broviac change - like a champ!
His immunotherapy book bag, pump and meds.
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