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Tito - son (toddler) with Acute megakaryoblastic leukemia (advice appreciated)
01-29-2024, 12:14 PM, (This post was last modified: 02-01-2024, 08:27 PM by felipepfb.)
Tito - son (toddler) with Acute megakaryoblastic leukemia (advice appreciated)
Our Tito was born prematurely (35 weeks and 1 day). He had to stay on the ICU because of his prematurity. While in the hospital, they performed blood tests on him, which revealed that he had a high white blood cell count (leucocytosis) and blasts in his blood, although he had no symptoms and the rest of his exams came back normal.

We learned later that it was TAM (a transitory form of leukemia, that resolves itself without treatment/intervention). In a couple of weeks, his white blood cells went back to normal, and when 8 months old, he did not have blasts in his blood anymore. 

We also performed some genetic tests on him, and found out that he had a mutation in the gene GATA1, and also in half of the cells of his bone marrow that were studied he had 3 of the 21st chromosome. He is not DS [Down's syndrome] (he does not look like it, and he is developing normally, so we have no reason to believe it). However, in his blood he has the same mutations that usually cause AMKL (his form of acute leukemia) in kids with DS.

A couple of weeks ago (he is 1y10mo old now), we learned that he has indeed developed AMKL. He is anemic, his platelets are low, and he has blasts and other leukemic cells in his blood again. The doctor said this time it is acute and not transitory, and recommended chemo, saying it would only be a 6 month treatment (instead of the 2-year period common for other types of acute leukemia).

We have started him on Protocel 23 [is this the correct one, or would the 50 formula be preferable?] a little bit over a week ago. We are giving about 1/4 tsp every 4h30min or so. We have noticed that he is tired (taking 1 nap more than usual, although he was doing that before as well, so we are not sure this is his anemia or Protocel, or both). He has had some small amount of white mucous on his nose (without other cold/flu symptons); we don't see this every day though. Since he started, we have seen 1 loose stool (although not a diarrhea, but less consistent than usual), but no white matter so far. We also noticed that his urine is getting darker (brown/orange). He is also very irritated lately, although his appetite seems to be improving a little.

One of his more natural doctors, prescribed an iron oral supplement and a vitamin B12 injection to help with the anemia/deficiency. We have given him the injection, but we fear the iron supplement would interfere with Protocel/feed the cancer. In any case, we want to avoid transfusions (because of mRNA), but also help alleviate the anemia, while Protocel takes its time to work.

We were giving him the pau d'arco tea (for the anemia and leukemia) before Protocel arrived, but we were told that it might interfere with Protocel. So, we stopped it.

Also, his belly (liver + spleen) is more swollen than before, but we are not sure if this is due to lysing or leukemia itself.

Is there anyone else here who has had a similar situation (a young child with leukemia/other cancer)? I would love to hear your thoughts and experience on this.

Any advice and encouragement is welcome Smile


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