Boy< so much of this sounds like a combination of myself and my daughter> The only difference- I did have colon cancer- stage 3. She definitely had mild MDS for years- slowly progressing. They finally found a match and had a perfect protocol for the Bone Marrow Transplant for her age. It was a good thing we did it when we did. When we went into the preconditioning for the transplant her blasts had doubled and she was considered to have AML- yep within 4 months time. They are suspecting that I have MDS now also. Most hospitals hold on to the slides till the patient passes away. The hospitals still have my daughter's slide from her first BMB 22 years ago. Why dont' they send them? They are too fragile. They will sometimes send the blood sample from that biopsy, and sometimes the slides, but not very often. It is a shame as my daughter's first BMA and BMB was at the age of 11 months. The docs are pretty sure she was born with MDS, but they will never know. We have found through the years that different pathologists will read them differently. We are retired military now (just recently) but our Hen/Onc have always gone and looked at the slides themselves.
As for me- I have failed prednisone and IVIG therapies everytime. My daughter failed prednisone and IVIG (also had an allergic reaction to both types of IVIG) numerous times. So, I had the challenge of having a toddler with lower than 50,000 on a good day, but most of the time in her 20s out of dangerous for her, normal for a toddler, situations. The poor child never got to ride a bike, go down a slide, ride a merry go round- the normal stuff because by the time she hit re-k, her platelets avg 30, by 2nd grade the 20's, and by 4th grade we were happy to see a 20 every once in awhile. At the time of her transplant, her avg count was 6.
Me, I never had known issues until my 2nd pregnancy. I am not dangerously low, but my white count is low also- hence the worry of the MDS- maybe that is a problem no one is telling you about? I am considered immunocompromised.