Leukemia
Diagnosis
Ben was first diagnosed with leukemia (ALL- acute lymphoblastic leukemia) on October 23, 2002 at the age of 3 and a half. It began with a cold and fever. After some Tylenol, the fever was gone but returned a few days later. So we went to Eagle Ridge Hospital just to check if there was another
infection present. Blood was taken to determine the problem and we were given antibiotics to help with the fever. We returned home around 9pm. At 11:00pm that same night, the hospital phoned back to tell us to go to Children’s Hospital right away, without telling us why. We woke Ben up and went straight there. They took blood, with Ben crying and not wanting another needle. The doctor came back about an hour later saying since there was an elevated white blood count, it could be leukemia. We were shocked, to say the least. Ben was admitted to the hospital and so began his first 3 years of chemo.
Treatment
Ben had intense chemo to bring his blood counts back to normal and get him into remission. He then had 3 years of chemo to keep him in remission. He spent many weeks in the hospital with infection after infection. He felt sick over and over and was very tired. During that time, he was able to attend kindergarten and grade one on and off. After the 3 years of chemo, Ben, now 6, was “healed”.
Relapse #1 + more intense chemo & radiation
From January to early August 2006, he was on maintenance drugs to keep him healthy. Checking blood counts every week or so, we noticed his platelets were getting low. Another bone marrow was done to check everything and our fears were confirmed. He had relapsed. Now what!? Our best option was to do even more intense chemo for another 2 years. Ben was subjected to heavy duty chemo drugs and treatments for the next 2 years while attending school from time to time. He always kept a positive attitude as much as he could.
PGD
After about a year, we were wondering what we could do in case the 2 more years of chemo didn’t work. At this point, we were starting to lose hope. The only real option left was a bone marrow transplant. The doctors checked the world wide registry but no bone marrow match was available. We heard of couples being able to do in vitro to conceive a child where the fertilized embryos are tested for a match (Preimplantation Genetic Diagnosis -PGD). If there is one that is a match for the sick child, it would be implanted in the uterus and when the child is born, the stem cells from the umbilical cord would be taken and used for a stem cell transplant to cure the sick child. We checked some clinics in
Vancouver but none encouraged us because of Pam’s age.
We were angry and disappointed with Children’s Hospital for not telling us about this possibility to save our child. There were ethical issues, they claimed, and their position was not clear. After going to the newspapers and Canada AM to make the issue public for other families that may be facing this situation, we pushed on to look for a clinic to help us out. One in Chicago did want to help. We had to raise lots of money for the procedure. We were about to go to Chicago when we received news from Children’s Hospital.
Relapse # 2
In May 2007, Ben’s routine checks showed the blood counts weren’t quite right. Another bone marrow biopsy concluded he had relapsed again, this time while on chemo. This meant chemotherapy was not
effective in getting rid of the leukemia. We were also too late in proceeding with our PGD to conceive another child. We were at a lose again.
Unrelated double cord stem cell transplant
Since there was no match for a bone marrow transplant, our final option was to do a non-related partially matched one. Another, newer method, involves collecting stem cells from the blood of discarded umbilical cords and use it as an unrelated umbilical cord stem cell transplant. This was still “new” in helping cure cancers. At this point, many governments do not collect or keep umbilical cords when a child is born. They are usually discarded. Some private companies do collect cords. Now, however, the benefits of stem cells is being recognized and more hospitals suggest parents to keep them for their own child or for others needing the stem cells. In our case, two closely matched cords were found containing 4 out of 6 markers. One came from Europe and another from the United States.
Isolation and waiting
Once again, we had to get Ben’s bone marrow eradicated. He, once again, had to have super intense chemo for 2 months to get him into remission. This time he also had to endure 8 sessions of whole body
radiation. On August 5th, 2008 Ben received his transplant (the two umbilical cord stem cells). Ben now had 3 blood types in his system, all fighting to graft in his bones and become his new bone marrow. Many infections were a serious possibility. We even had the infectious disease doctors come in and say that he will not make it due to an infection that he had. Ben was only allowed to eat plain noodles, water and crackers. Ben had Graft-vs-host (GVH) disease where the body rejects the new blood and stem cells. He had fevers and infections. Some of the drugs caused hair to grow everywhere and increased his hunger and weight. Ben was in an isolation room that he was not allowed to leave for 5 months. After those 5 months, the stem cells had engrafted and was producing blood.
Success!
The transplant was a success. Many complications can follow a patient of a transplant for years after the transplant. There is a possibility of the cancer returning, and of GVH (Graft vs Host) and other complications. Ben tended to walk on his toes as the years of chemo had tightened his Achilles tendon causing it to hurt for him to put his heal down. He possibly needed an operation to extend the tendon. Seven years had gone by since the transplant. Ben had been going to school and playing soccer on a team. We continued to check his blood and how he was feeling every 3 months. After the first 2 years, we needed to only check his bloodwork once a year. We hoped he would continue to be well in the future.
Ben was first diagnosed with leukemia (ALL- acute lymphoblastic leukemia) on October 23, 2002 at the age of 3 and a half. It began with a cold and fever. After some Tylenol, the fever was gone but returned a few days later. So we went to Eagle Ridge Hospital just to check if there was another
infection present. Blood was taken to determine the problem and we were given antibiotics to help with the fever. We returned home around 9pm. At 11:00pm that same night, the hospital phoned back to tell us to go to Children’s Hospital right away, without telling us why. We woke Ben up and went straight there. They took blood, with Ben crying and not wanting another needle. The doctor came back about an hour later saying since there was an elevated white blood count, it could be leukemia. We were shocked, to say the least. Ben was admitted to the hospital and so began his first 3 years of chemo.
Treatment
Ben had intense chemo to bring his blood counts back to normal and get him into remission. He then had 3 years of chemo to keep him in remission. He spent many weeks in the hospital with infection after infection. He felt sick over and over and was very tired. During that time, he was able to attend kindergarten and grade one on and off. After the 3 years of chemo, Ben, now 6, was “healed”.
Relapse #1 + more intense chemo & radiation
From January to early August 2006, he was on maintenance drugs to keep him healthy. Checking blood counts every week or so, we noticed his platelets were getting low. Another bone marrow was done to check everything and our fears were confirmed. He had relapsed. Now what!? Our best option was to do even more intense chemo for another 2 years. Ben was subjected to heavy duty chemo drugs and treatments for the next 2 years while attending school from time to time. He always kept a positive attitude as much as he could.
PGD
After about a year, we were wondering what we could do in case the 2 more years of chemo didn’t work. At this point, we were starting to lose hope. The only real option left was a bone marrow transplant. The doctors checked the world wide registry but no bone marrow match was available. We heard of couples being able to do in vitro to conceive a child where the fertilized embryos are tested for a match (Preimplantation Genetic Diagnosis -PGD). If there is one that is a match for the sick child, it would be implanted in the uterus and when the child is born, the stem cells from the umbilical cord would be taken and used for a stem cell transplant to cure the sick child. We checked some clinics in
Vancouver but none encouraged us because of Pam’s age.
We were angry and disappointed with Children’s Hospital for not telling us about this possibility to save our child. There were ethical issues, they claimed, and their position was not clear. After going to the newspapers and Canada AM to make the issue public for other families that may be facing this situation, we pushed on to look for a clinic to help us out. One in Chicago did want to help. We had to raise lots of money for the procedure. We were about to go to Chicago when we received news from Children’s Hospital.
Relapse # 2
In May 2007, Ben’s routine checks showed the blood counts weren’t quite right. Another bone marrow biopsy concluded he had relapsed again, this time while on chemo. This meant chemotherapy was not
effective in getting rid of the leukemia. We were also too late in proceeding with our PGD to conceive another child. We were at a lose again.
Unrelated double cord stem cell transplant
Since there was no match for a bone marrow transplant, our final option was to do a non-related partially matched one. Another, newer method, involves collecting stem cells from the blood of discarded umbilical cords and use it as an unrelated umbilical cord stem cell transplant. This was still “new” in helping cure cancers. At this point, many governments do not collect or keep umbilical cords when a child is born. They are usually discarded. Some private companies do collect cords. Now, however, the benefits of stem cells is being recognized and more hospitals suggest parents to keep them for their own child or for others needing the stem cells. In our case, two closely matched cords were found containing 4 out of 6 markers. One came from Europe and another from the United States.
Isolation and waiting
Once again, we had to get Ben’s bone marrow eradicated. He, once again, had to have super intense chemo for 2 months to get him into remission. This time he also had to endure 8 sessions of whole body
radiation. On August 5th, 2008 Ben received his transplant (the two umbilical cord stem cells). Ben now had 3 blood types in his system, all fighting to graft in his bones and become his new bone marrow. Many infections were a serious possibility. We even had the infectious disease doctors come in and say that he will not make it due to an infection that he had. Ben was only allowed to eat plain noodles, water and crackers. Ben had Graft-vs-host (GVH) disease where the body rejects the new blood and stem cells. He had fevers and infections. Some of the drugs caused hair to grow everywhere and increased his hunger and weight. Ben was in an isolation room that he was not allowed to leave for 5 months. After those 5 months, the stem cells had engrafted and was producing blood.
Success!
The transplant was a success. Many complications can follow a patient of a transplant for years after the transplant. There is a possibility of the cancer returning, and of GVH (Graft vs Host) and other complications. Ben tended to walk on his toes as the years of chemo had tightened his Achilles tendon causing it to hurt for him to put his heal down. He possibly needed an operation to extend the tendon. Seven years had gone by since the transplant. Ben had been going to school and playing soccer on a team. We continued to check his blood and how he was feeling every 3 months. After the first 2 years, we needed to only check his bloodwork once a year. We hoped he would continue to be well in the future.