Corbyn's New Heme Dr

We met with the new heme dr Wednesday concerning Corbyn and his platelet disorder. The weirdest part of the appointment was when the dr's asked about family cancer history. Of course I had to talk about both my mother and mother in law are both taking chemo for different kinds of cancer. Both are doing different forms of chemo for their cancers. My lovely child just had to point out my missing ear chunk due to my prior cancer. So yes I had to find the name, write it out on a paper towel (Apocrine Adenocarcinoma variant: Ademoid Cystic Carcinoma with Malignancy to the margins.) This was necessary because once they found out it was a sweat gland tumor that attacked my ear and fingers running down behind the ear, inside the ear drum about the penetrate the ear drum, and about half the ear had to be removed they were curios and wanted the name.

With this information the next question was, "is there any other history of cancer," to this my lovely child once again stated, "the dr's think my mom has cancer again." Looking shocked at this comment they looked at me and asked, "what are they looking at this time?"

UGH!!!! With my children there really are NO secrets!!! So now I was questioned again and had to tell them that the dr's are looking at my right ovary at an ugly looking cyst. I have a lump in my right breast that the mammo has required a follow up ultra sound with possible biopsy. And they are trying to figure out what has messed up my liver in the past year.

(sigh) The heme/onc dr team was very fascinated that everything being looked at is on the right side. To make matters more interesting they asked me about any bleeding issues i have had in the past. Hemorrhagic issues after deliveries, did I require any transfusions, and why did I have a hysterectomy... UGH this was HIT apt NOT mine...

FINALLY!!!! the attention was back on him and his platelet disorder. In the end we got back around to him and he had a ton of blood work as he has been off prednisone and  IVIg long enough to get good baseline counts. He will also be getting a bone marrow biopsy to ensure there are no signs of fibrosis within his bone marrow.

Turns out to be a blessing in disguise that he was NOT allowed to continue past the 5 or 6 doses of nPlate  Apparently in younger children this medication is known to cause fibrosis within the bone marrow. He had Rituximab and failed that as well. There was another IVIg therapy he has also failed.

The new dr wants to hold off on removing his spleen as long as possible wait until that has to be done.

We return in Jan sometime they will call one the bone marrow is scheduled to let us know the 2 dates we need to be at the John Hopkins Hospital, one for the additional testing, and one for the follow up.