So much to say, yet so little coherency to say it…yet here I go again:

I recently read the latest publication on infant leukemia. My head is spinning. Broken down it basically says (in laymans terms of course) that there is no good treatment plan, it usually comes back, and it has researchers baffled.

Not really the bedtime reading I was hoping for.

Basically it is so rare:150 cases a year in babies under 12 months old and only 200 cases in five years if the patient is under 6 months old. The younger the baby, the more aggressive the leukemia equalling more of the death toll.

The article discusses whether transplant really helps with survivorship. Both transplant and the latest chemotherapy protocols are seeing a 40% chance of survival for infant ALL. It mentions Seattle’s own Dr. Sanders’ 2005 publication and her seeing a significantly higher survivorship than the rest of the country with infants in first time remission (76% survival). The new publication seemingly dismisses her findings because:

  1. Her babies may not be of the highest risk group.
  2. The patient must get into remission without relapse with chemotherapy to get to transplant…it’s not 76% of the general population with infant leukemia.
  3. They use TBI (total body irradiation) to get the results they are getting.

Well it’s not rock science to know that it is horrific no matter what path you choose. Yep, no structural geologists needed here. We get it. Really.

I am thankful that Lydia is a miracle. I am thankful that she is a survivor. She hasn’t lived 5 years in remission, but she is surviving today! I am thankful that we chose to go to Seattle. I am thankful that because of her young age and extremely high leukemia counts that hopefully new research can be gained from her good outcome. I hope that it will debunk the myth of Dr. Sanders’ not necessarily having a true representative of the population.

As far as #2 goes…duh. To go to transplant within first time remission, it requires a baby getting into remission via chemotherapy first. The complaint about this is the high relapse rate before transplant. This is a huge problem. We lost many of the babies in my support group to this right before they were to be transplanted…and sweet Annah in Seattle. All the researchers are looking for something to reach the larger population of babies diagnosed. Praying for a cure.

And lastly the effects of the TBI (total body irradiation) and the transplant itself, including graft versus host disease. We chose Seattle because they use TBI on the infants to kill all lurking leukemia. This is not very PC. The ramifications we have yet to see. Cataracts, no adult teeth, growth hormones needed, possible diabetes, infertility, and God only knows about brain development. These possible side effects are terrible. I will cry if I think about them too long, but leukemia is worse. That was the choice we made.

I am thankful that the researchers are trying their hardest to find a better solution for our babies. New babies keep getting diagnosed and the torture begins.

I spoke to one of the researchers who published the new publication when we were interviewing transplant centers. He was honest and bold. He told me about his research versus some of the other research out there and at that point he wouldn’t know which choice he would make upon transplanting protocols (TBI/no TBI/double cord/etc.) if his own child had infant leukemia. That spoke volumes to me. There is no right answer. Every parent has to make the decision that is right for there family.

By the Way, if you made it to the end of the newest publication you would find that these particular researchers no longer recommend transplanting.