November 2016

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

Round 2

After a beautiful year cancer free, back at home living a normal life, the family received a terrifying phone call from the doctor.

For the last year Danielle has been coming back to the dreaded doctors office every month for routine blood work, but after a year of being cancer free it was spread out to coming in every 3 months. Well, that first 3 month check in is when we received news of elevated white blood cell count. After further testing, it was confirmed that the leukemia had come back.

Danielle’s reaction was mostly anger, for obvious reasons. The rest of the family was devistates, heartbroken, and scared.

As scared as we all were, Danielle focused on making a video to say goodbye to her class. Monday morning, the family went down to school and Danielle showed her video and her class wished her a speedy return.

After that it was off to Doernbecher to find out the next steps.

When we arrived the first thing was to get her PICC line in to make administering the chemo and other medicine easier. It was an emotional process for Danielle until they gave her a little morphine and then she was happy as a clam.

At this point we don’t have much to report. The doctors will start chemo soon and will continue treatment until she is in remission, once she is in remission we need a bone marrow donor, after that, we can go home. There are a lot of “what if” questions and we don’t have the answers to all of them. We are trying to stay focused on the present and not on the future or the possible future. Just being with Danielle and watching her draw.

The family is in a little shock right now, we are doing our best to keep family and friends updated and hopefully the blog will be more helpful this time in keeping everyone up to date on Danielle.

Until then…send good vibes.