Author: billdeisz

May 2017 be the year for renewal and health.  That’s a prayer I say a lot in hopes that my daughter will be seeing the end of cancer this year and be able to grow up in peace and happiness.

This Christmas has been rough, I didn’t send out cards this year, we just have too much going on.  I’m sorry to all of you who usually get a card from us, let’s see what 2017 brings.

Update on the B.M. transplant:

Danielle is going in for surgery tomorrow to get her Hickman port placed – this will be used to deliver the new cells into her body.  We are nervous as any surgery is risky and she only has 6 days to heal before her intense chemo begins.

We then check her back into the hospital on Dec. 28th, this is -8 days and she begins her chemo.  The chemo she is getting will destroy her existing immune system, she will lose all of her hair and she isn’t too upset about that as mom will not be urging her to wash or comb it. I swear there are days, she wishes her teeth will fall out too, so I don’t harrass her to brush them!

She will immediately start anti seizure meds as the first couple days of chemo can cause seizures.  The next couple days she starts another type of chemo that has very corrosive properties and on day 3 she will have to be woken up every 2 hours to use the restroom.  She will not be a very happy camper with only 2 hours of sleep in between wakings, but that portion will only go on for 2 days.  Hmmm, this brings back memories of how she used to wake me up every 2 hours for feedings.

This chemo will also be very harsh on her digestive system causing a lot of nausea and other unpleasantness I won’t go into, but needless to say, I now see why we encouraged all the weight gain.  I pray it was enough, but we will bring her anything/everything we can that may entice her to eat while going through this…oh why of why doesn’t Mr. Bento deliver yet?  Dad and I need to check into Uber Eats…lol

After 7 days of chemo, she will get one day of rest, then we do the B.M. transplant.  Once that is done, we have a very dangerous possibility of her body rejecting the new cells or of developing a condition known as graft versus host disease.  These are both situations we do not want.  Her chances of success are 50%.  Please pray for my baby girl.  Her father and I are so scared, we cannot even consider the possibility of losing her.  This world is a much better place with her in it.

We will try to update you as we know more.

Thank you and have a Merry Christmas, we’ll see you in the New Year.

-Mommy

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…

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

 

 

 

 

 

 

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!!