family – Page 3

Updates on Danielle’s Bone Marrow Transplant

Danielle will be getting her bone marrow (B.M.) donation under several extenuating circumstances:
She got her B.M. biopsy yesterday, if it comes back and leukemia is gone, the B.M. Transplant will be scheduled.
That’s contingent on the donor being available at that time, which means if they are not available we will start another round of chemo, if they are, we start a whole new adventure.

To prep for a B.M. Transplant she will undergo 7 days of round the clock chemo! that’s double what she has ever had so she will be very weak and run down, but they do this so that her immune system is gone and prepped to accept the donor’s cells.

Needless to say, life has been very tough, but we are pulling through as best we can.

I’m trying really hard to make Christmas as normal and special as I can for the kids, but it is hard to have “normal” when your entire life if ruled by microscopic cells that you can’t even reason with.

If you’re reading this Danielle, someday you will be this happy healthy little girl again! Mommy loves you.

Stay tuned…

I can’t believe I said “Boner”

OK so it may have been noted by some that I drink too much coffee and talk too fast at times-sometimes this can lead to some funny stories…well what do you get when you put Blood Marrow Donor together in one word? Boner! whoops I said that to someone the other day that my son is not a viable boner! 😐

We found out that Devon is not a viable donor for Danielle and that they would be going to the registry (see BeTheMatch post from earlier) to find one. They came back the very next day to tell us they found several viable donors…over 3000 in fact! Yes over 3000! We are going to be able to very carefully select several 100 people from this list and carefully narrow them down to the absolute best donor for Danielle!

I’m told the best options are young, male and same blood type (A+) if available so they’re narrowing the results based on those. I know you’re scratching your head going “male” … what/why? We all know the females are the strongest of our breed (haha j/k) but when a woman carries a child her body develops antibodies to protect herself from the little guy which can make it a little more difficult for a donation as the person receiving it may react to those antibodies. Anyway it is quite complex and way above my medical understanding, but long story short, we can carefully select her best possible option!!

Please join BetheMatch if you haven’t already as the reason she has a chance of a cure from this disease is because someone else made that choice. If you are already on there but have moved, please contact them to update your address and contact information.

On a side note, I just found out today that we lost my Aunt Jane Burnard last night. My heart is breaking and I want to let her kids know that I am praying for you all as I know you are hurting too. She will be greatly missed.

Love you guys,

Trina

Life at Hotel “D”

There is nothing new to report today, Danielle had a rough night last night. She was dizzy and they took her off blood pressure meds to help. She seems to be in great spirits. Friday I dropped by Laika (a company here in Hillsboro that created some very well-known stop motion films: Coraline, ParaNorman, the Box Trolls and Kubo and the Two Strings) to pick up a gift bag that was the highlight of her night! Thank you Aunt Jojo for coordinating that! You’re the BEST. She was so excited, her favorite movie EVER growing up was Coraline and they included a poster, she made me hang that immediately!! pics of her loot are posted.

We’re still in waiting mode for her numbers to come back up so that we can test to see if her chemo was successful…..or not. Please keep her in your prayers and if you don’t pray send her some good vibes and positive thoughts. Love you all. Mommy

Then we hit the sugar and got goofy No she’s NOT having an allergic reaction… She put Dots candies under her upper lip! She pretty!!

Chemo has officially started

She’s started her chemo today. I have a lot of people asking me what’s happening, how long we’ll be here etc.

The answer is that the chemo is starting, It will go for about 5 days. Then we wait. The chemo kills off all her immune system as well as the cancer, so after her numbers come back up they will test her to see if she is in remission. (this takes approx. 4 weeks) If so and we have a viable bone marrow donor, then they will do the transplant. If she is in remission, but there is NOT a viable donor, then they will do a second round…approx. same time frame. IF she is NOT in remission, donor or not, we do another round of chemo and another month of waiting..(this will continue until she is in remission) Then once we get a donor and the transplant is done, we wait….again probably about a month.

So the best case scenario is she finishes this round, in the next 2 weeks we are notified her brother is a match and he’s willing/able to donate, or they go to the registry and find a match. After her 4 weeks of healing is up we find out she’s in remission, get the transplant and a month later take her home. What are the chances this will go exactly like that. Not very likely, but please pray for the best. 🙂

A lot of people are asking how they can get tested to see if they are a match. This is really weird and we had to have them explain this to us several times in detail because it seems so weird. First, the chances of any family or friend being a match is extremely low and insurance only pays to test full blooded siblings. If that is not a match they go straight to the registry. The tests are expensive so insurance pushes this…that being said if you are interested in being tested and considered, please go to Bethematch.org and get tested. You may be considered to save the life of someone elses child, but wouldn’t that be an incredible gift? (on a side note: I joined this several years ago, but i’ve never been contacted). If by chance you are a match to Danielle, that would be flagged quite quickly and they would contact you immediately.

Thank you for your love and support during this tough time, we appreciate it more than any of you can possibly imagine.

-Trina