Wednesday, January 22, 2014


With a nights sleep between now & Mailyna's UCSF appointment, the nervousness is driving me crazy. I've been sleeping less and exhausted more. Anxiety is something I've always struggled with, and this is intense.  Feeling helpless and lack of control are two of my weaknesses. Finding a match for Mim is something I've been praying for since the moment I found out it was an option, but I'm beyond scared. While looking for a match has been a year long road so far, that's really the easy part.

Once we find a match, the donor can back out at any time. There is chemo to kill off her bone marrow.  Chemo for transplant patients basically brings someone to an extreme point of sickness, before bringing them back to life with the new marrow. And that isn't a quick process... Her hair, that she loves so much, her eyebrows & lashes will all fall out. Vain, I know, but she's a preteen girl. And let's face it, I'm her mother & she sees how much care I put into my looks. Mouth sores, gastro issues, skin changes, weightloss. For weeks, her immune system will be so weak, that she'll be in isolation. Away from her sisters, family and friends. When she is finally strong enough to go home, she still won't be strong enough for family visits, school, yoga, Eskrima, trips to the grocery store, to the movies, to the mall... none of it. Then there's always the chance her body will reject the marrow. Ohh and some chemo medications can also cause infertility. Sigh...

Now let's say the bone marrow transplant works, it's still not the end. We'd have follow up appointments like crazy, to make sure the recovery is going well. All in all, it would take her (and us) out for roughly a year.  Also, after 11 years of transfusions, iron overload will still be a problem and to get rid of the excess iron, we'd go in to have a pint of blood taken from her (phlemotomized), which is basically the opposite of what we're doing now with transfusions, but much easier and faster, for a couple of years. 

It may sound odd, but as challenging as it was, we easily adapted to life with beta thal. We quickly learned how to manage the transfusions every 3 weeks, administering desferol treatments, exjade routines, surgeries, countless appointments, parent-teacher conferences, school... I even send her to camp in so cal for a week during the summer, without us!   But this, this is new territory and I'm absolutely terrified. The reward of a life free of beta thal does outweigh the risk, but the risk is a scary road as well.  So, we shall see. 

-one stressed mama

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