Tony’s Story

Site created on July 27, 2019

The start of Tony's story actually started 12 years ago when he was diagnosed with high platelets (essential thrombosis or ET). most people can go their whole lives with ET and it never progresses to anything more, but a rare few (15%) progress to myelofibrosis. so jump 12 years later to now and that's where we are at. 01 -07/2019 we've spent trying to maintain/treat the disease with first a pill and now a regime of shots. he's had 6 blood transfusions so far this year and so doctors now feel it's time for BMT.  8/2019 - test Dominick and Steffan for potential donor.  Once donor is selected by JH, BMT will be scheduled. 9/6/19 - donor selected. Dominick will be the donor. 9/10/19 - bmt scheduled for 10/18/19.

Newest Update

Journal entry by Amy Baldi

I know it's been awhile - and I'm sorry about that.  But I suppose no news is good news.  Tony has been doing very well.  He went back to work in May/June.  Of course, with COVID - he wears a mask when needed.   He and I both are playing lots of Pickleball - especially because the racquetball courts are closed - he needed to get out and do something.  We've spent a lot of time this summer at Lake Anna and had several big family trips there, which we loved doing.  

I can't believe we are coming up on 1 year from his BMT day.  It all seems such a blur right now and yet so fresh in our memories as well.  1 year ago today was his 2nd day of chemo.  We were living at John Hopkins and away from family.  What a year it's been.  He's had 2 rounds of vaccinations (6 month and 8 month).  They were a little delayed due to COVID and schedules, but so far so good.  Doctors say he's a super star (or maybe that's me) - regardless he is.  He doesn't think so and says he doesn't want any "special" treatment on his 1 year BMT day (October 18) - which I will honor.  And those that know me - know how hard that is for me to do.  But I will.  He's just happy it's behind him and just looking forward to move on from it all.

I'm working from home now full time.  Not sure how I feel about that.  Of course I don't miss the commute to the office.  I can sleep in a bit longer, but it's way too easy to work longer hours.

Joey's a Junior in HS and doing virtual learning.  He's adapting, but even he says he'd learn more doing in person learning.  I hope that happens sooner than later - big Junior year and have to start looking at colleges.  YIKES!

Dominick and Steffan moved out and are renting a place with 2 of their friends.  they aren't that far away and Dominick is working with Tony - so we get to see him almost everyday still.

today is Tony's birthday - real birthday - and we will be going out to eat for dinner.  His choice.  So - maybe there is still hope he will let me celebrate his new birthday (10/18) - he's earned it.

Next up - he'll be going up to JH for another round of vaccinations and visit with Audra.  They'll do some blood test and just make sure all is still good.  that again was delayed because round 2 of vaccinations was delayed, but should be this month.

Stay Safe and Healthy ALL!

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