Hope? ... but maybe not enough?

Ben at Mount Seymour having fun tobogganing.

Ben has been continuing his chemo for 5 years, 3 months. He has tolerated most of it well but again shows signs of his body weakening. Every time he is in the hospital (every 2 weeks on average) for chemo, he gets either a high fever, stomach pains, feels noxious, catches a cold, has a rash, has low blood pressure or any combination of all

these reactions. We are looking down the road when he is due to stop his chemo treatments in August 2008. As in August 2006, we are worried he may relapse yet again. The doctors would like to give him a bone marrow transplant, as that may give him a fighting chance at survival, despite the serious side eLects. Unfortunately, there

is no bone marrow match on the world registry.

We, as parents, are starting to have less hope...

We did learn of a procedure where couples are having another child (in vitro) to save their sick child. The process involves collecting eggs from the mother and fertilizing them in vitro. After 4 cells divisions in the egg, one cell is removed and can be tested to see if it is a bone marrow match. The process is called PGD (Preimplantation Genetic

Diagnosis). If the tissue type is a match, the embryo is implanted into the uterus and hopefully the pregnancy goes well and the child is born. When the child is born, the cord blood (from the umbilical cord), containing stem cells, is collected. These stem cells are then transplanted into the sick child, whose bone marrow has been destroyed using chemotherapy and radiation, and, because it is a match, the sick child’s body should not reject it. Therefore, new, healthy bone marrow is grown and hopefully, the leukemia is gone.

Of course, some might see this as controversial, but scientifically, if we are given the technology, and it can be done to save a child, at absolutely no harm to the donor child, then there is no question but to try it.

We had lots of hope in this procedure. We have looked into this with many fertility clinics and even though Pam is producing eggs with no problem, almost all the clinics would not do it. Why? They say Pam is too ‘old’. Most of the clinics’ age limit for in vitro is 44. Pam is 47. We were told that there has been no one in the entire world that has had a successful pregnancy at age 47 using in vitro. The reasoning is that the eggs are too weak to withstand the manipulation during the procedure. Many miscarriages are likely at that age as well.

We found out that the doctors at Children’s knew of this procedure, yet did not mention it to us as a possible solution to getting a bone marrow match for Ben. They knew we were open to having another child. If we were told a few years ago about this, we would have had a chance to do the PGD and in vitro as Pam would have been

younger and our chances of success would have been far greater.

We actually saw that there might be light at the end of this tunnel. It is not to be, from the looks of it.

However, as parents, we are willing to try EVERYTHING to help our son, Ben. A couple of clinics in Seattle and Chicago are testing various drugs to strengthen the eggs to make the PGD process more successful. We are contacting them to see if anything can be done. The whole process is very expensive ($30,000+). Another obstacle...

That is where we stand at this point. In the mean time, we are trying to give Ben (and Stephanie) a normal a life as we can. We would like to take them to Disneyland, despite the Knancial dicculties. They both deserve lots of fun and happiness and we would like to give them just that. It’s often diccult doing this knowing what we know. Taking things day to day is our only way of coping.

We smile and do our best to carry on.... hopefully our next entry will be a happier one.