please help my baby sister

Xplicitlnck

Xplicitlnck

Well-Known Member
Jan 2, 2012
4,030
Long island ny
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330ec
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Twin 7.4 straight drive
As some of you know from my previous thread, my baby sister is in alot of trouble and finding a dna match for her bone marrow transplant seems to be very hard. My family is asking for help so we can keep finding the tests until we find a match. The link will tell the rest of the story. Thanks for looking.
https://www.gofundme.com/alexandrahurley
 
Xplicitlnck said:
Thank you sir or mam
Click to expand...

Brand new on this board as of today but trolling before I joined your post caught my eye. New to this forum but not new to blood diseases. Had CLL or chronic lymphacetic leukemia, and was diagnosed in 1997, and as the usual course they "watch and wait" until it or you needs treatment in my case I was fine for 13 years then it reared its ugly head.

Six years ago when my whites went to 470,000 and I was anemic, I finally went to see a doc and they treated right away, though still outpaitent, with 6 mos of chemo. got better and actually a clean bill of health and thought I skated with some nasty side effects (all short lived) and no hair loss.

Now I read your posts and know your sister has a different type but the treatment is still the same: a bone marrow transplant. How they prepare her and what meds she will be on is probably different.

My counts started to rise 2 years ago again so they stuck me on Inbrutinib, the supposed gold standard for treatment and remission and it did, with no side effects, but they told me, if that pill ever stopped working then there is nothing else.

So they ordered me to undergo a bone marrow transplant, with hope of a cure.

I just want to put you and your sis at ease a little bit, I went thru it 7 months ago April 3rd, and 2 months ago they found no traces of leukemia left in my blood or marrow. My donor was my older brother.

Mine went fairly easy, it was painless, lots of sticking but thats the least of it Im sure by now you know marrow aspirations are no fun. But not that bad either, uncomfortable is the word. Its over quick. Anyway, in my case it was 19 days in the hospital, 2 days of high dose chemo, followed by transplant day, just another little bag of your donors cells, then they want you active so the next day I did 50 laps of the BMT floor, yes pushing the IV pole, and in the weight room every day thereafter, working the machines and doing every excercise I normally do with weights, this time with just 10 lb'ers. I lost all my hair after 11 or so days, but my girlfriend said after my transfusion my color came back and in your mind you know these docs know what they are doing so all the BS is worth it.

Tons of info and stories out there but I chose not to be an armchair quarterback just rolled with it and left it into natures hands. It is tough on the people around you my 5 adult kids and all my grandkids were very upset, but relieved after I got out of hospital, and docs said everything going as it should.

I did get Graft vrs. Host disease, but they want that to happen so the new blood recognizes the old with any signs of abnormality so it attacks it and kills it. I went back to work 3 weeks after they took IV line out of my shoulder, they send you home with it so you can hydrate yourself. They make you stay on many different meds till counts rise and you are not nutropenic. they stopped a few in the last 3 months but you stay on antibiotics and anti fungals for about a year Im told.

Have resumed normal life. Very sun sensitive, because of meds, Im a little concerned because Im a roofing contractor and out in the sun much of the time, but they tell you to use 70 or higher spf.

I hope I shed a little light and gave you a little insight with natures help I pray your sister will be fine.

If you have any questions dont hesitate.
 
sfergson727 said:
Done, your sister and your family will be in our prayers. I've also shared the go fund me on my facebook page. Best wishes,
Scott
Click to expand...
Thank you so very much Scott words can't describe how thankful me and family are to people like you
 
Richd said:
Brand new on this board as of today but trolling before I joined your post caught my eye. New to this forum but not new to blood diseases. Had CLL or chronic lymphacetic leukemia, and was diagnosed in 1997, and as the usual course they "watch and wait" until it or you needs treatment in my case I was fine for 13 years then it reared its ugly head.

Six years ago when my whites went to 470,000 and I was anemic, I finally went to see a doc and they treated right away, though still outpaitent, with 6 mos of chemo. got better and actually a clean bill of health and thought I skated with some nasty side effects (all short lived) and no hair loss.

Now I read your posts and know your sister has a different type but the treatment is still the same: a bone marrow transplant. How they prepare her and what meds she will be on is probably different.

My counts started to rise 2 years ago again so they stuck me on Inbrutinib, the supposed gold standard for treatment and remission and it did, with no side effects, but they told me, if that pill ever stopped working then there is nothing else.

So they ordered me to undergo a bone marrow transplant, with hope of a cure.

I just want to put you and your sis at ease a little bit, I went thru it 7 months ago April 3rd, and 2 months ago they found no traces of leukemia left in my blood or marrow. My donor was my older brother.

Mine went fairly easy, it was painless, lots of sticking but thats the least of it Im sure by now you know marrow aspirations are no fun. But not that bad either, uncomfortable is the word. Its over quick. Anyway, in my case it was 19 days in the hospital, 2 days of high dose chemo, followed by transplant day, just another little bag of your donors cells, then they want you active so the next day I did 50 laps of the BMT floor, yes pushing the IV pole, and in the weight room every day thereafter, working the machines and doing every excercise I normally do with weights, this time with just 10 lb'ers. I lost all my hair after 11 or so days, but my girlfriend said after my transfusion my color came back and in your mind you know these docs know what they are doing so all the BS is worth it.

Tons of info and stories out there but I chose not to be an armchair quarterback just rolled with it and left it into natures hands. It is tough on the people around you my 5 adult kids and all my grandkids were very upset, but relieved after I got out of hospital, and docs said everything going as it should.

I did get Graft vrs. Host disease, but they want that to happen so the new blood recognizes the old with any signs of abnormality so it attacks it and kills it. I went back to work 3 weeks after they took IV line out of my shoulder, they send you home with it so you can hydrate yourself. They make you stay on many different meds till counts rise and you are not nutropenic. they stopped a few in the last 3 months but you stay on antibiotics and anti fungals for about a year Im told.

Have resumed normal life. Very sun sensitive, because of meds, Im a little concerned because Im a roofing contractor and out in the sun much of the time, but they tell you to use 70 or higher spf.

I hope I shed a little light and gave you a little insight with natures help I pray your sister will be fine.

If you have any questions dont hesitate.
Click to expand...

Now that my friend is how you enter an amazing forum. The people of csr are poetically some of the best, most caring, most fun and most amazing people I've ever met and to jump in and throw your story out like that to make a complete stranger feel better, shows that you belong here.
Now yes you definetly brought my spirits up alot with your story. It's helps me believe that they will fix this (which is hard when they can't give you answers). Thank you so much for that.
 
Rich D....what an amazing second post. Thank you so much for your inspiring words to our fellow boater. Welcome to this forum
 
Hoping for the best for your Sister.
 
Thank you guys and gals so very much you have no idea how much this helps and how thankful my family and I are!
 
Done
Prayers with you and the family
 
Went to donate, but its closed for the time being, so sending my best wishes to your little Sis and your family from across the pond...

Dave in UK
 
Same.... wanted to donate but the site is temporary closed until a need is imminent. Will keep an eye and the best wishes and prayers from here.
 
Sorry guys I updated so many sites I had the donation page linked to but got caught up in the middle of doing so and Jay never got back to it.
Update as of last Monday:
Because of everybody's extreme generosity we are currently not excepting anymore donations. We raised 10500$ in just under 24 hours which is absolutly amazing and heart warming. Thank you all so much for all your generosity and help.
Update as of about an hour ago:
My brother older sister and myself took dna tests to c if we're a bone marrow match. Got the results back today and we're all a half match so no dice. The good news. Apon getting the negative results the doctors went straight to the registry. Found multiple perfect matches. Just need to reach out to them and c if there local or willing to travel.
As for her current condition. Basically the same
Red blood cells still slowly declining
White blood cell count holding at .2 (very bad)
Platelet count dropping 12000 a day
She's currently getting multiple blood infusions every other day along with anti fungi infusion. (I may have that name wrong)
So now we just wait for the doctors to set up the donor and the procedure.

Now for the funds we raised. They will go to
-to protect Alexandra privacy I won't say what but there is a few uncovered expenses that have to do with the side effects of the bone marrow transplant. So that will be first.
-all travel expenses for the donor including flight (if not local)
Hotel and so on. (If we're responsible for that)
-after everything is all said and done my family will host an event to attract more donors to join the registry. Most likely at a location with the company bethematch.org on site to sign you up and take your cheek swap right there
-any left over funds will be saved for Alexandra so down the road that side affect can be brought to life which process is not covered by insurance. Again that's all I say to protect her privacy.

Thank you everybody so very much updates will be posted as I get them
 
I signed up on the registry a few years ago to help a neighbor girl that was fighting leukemia, and I have stayed on it.
I figure I couldn't help her but maybe there's someone else out there that I'm a match for.
I hear it can be pretty painful for the donar but I wouldn't hesitate if called.
Our neighbor friend is in remission and doing great.
Best of wishes to your sister.
 
wyrman said:
I signed up on the registry a few years ago to help a neighbor girl that was fighting leukemia, and I have stayed on it.
I figure I couldn't help her but maybe there's someone else out there that I'm a match for.
I hear it can be pretty painful for the donar but I wouldn't hesitate if called.
Our neighbor friend is in remission and doing great.
Best of wishes to your sister.
Click to expand...

Its because of people like you that she has a fighting chance and for that I thank you very very much.
As for the procedure maybe years ago it was different and more painful but from what the doctors have told my family there are 2 ways of doing it for the donor. What factors decide which way will work I'm not really sure but the 2 ways are a simple IV in each arm which draws blood goes to some contraption that removes what is needed and then puts the blood back into your other arm. Most painful part is a needle in each arm
Second method is a local anesthetic out patient procedure. From what I understand and I'm not a doctor is the put you under and do sorta like a bone marrow biopsyand take 5 to 10 percent pf your blown marrow. From what the doctors say u wake up and no soreness or anything from the procedure. And you go home
 
They do bone marrow transplans with blood stem cells too, which is how I got mine. It is painless for donor because they just take their blood, not marrow. Hope our sis is doing well
Regards
Rich
 
X, if they need anything more please keep us informed.
 
Thanks everybody. As updates come in I will let you know. What I do know is sometime over the next 2 weeks my family will be hosting an event in which bethematch.org will be attending. They will have an area set up in which you can sign up and get your swab done on site. Although you most likely won't be donating to my sister, you will be added to the registry and when it's your turn to save a life and keep a family together they will call you. So we're trying to encourage as many People as possible to show up and sign up. Thank you very much again to everybody
 
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