Danielle is starting to make white blood cells..on her own! There aren’t a lot yet, but we are very excited. She has actually gotten an ANC count this morning, which is even better. This means she is developing an immune system again. Her count this AM was ~200. (a count of 500 for 3 days in a row means she can start sleeping at home) that being said, she would still need mom and dad to drive her to the hospital 4 or more days a week to do blood work, administer meds, platelets etc as needed, however, sleeping in her own bed without hourly vitals…priceless! First things first. She has to get off the TPN (IV nutrition) and start eating. She quit eating weeks ago and not even a chocolate bar could entice her, so we’ve got work to do. She also has to get off the morphine and as her mucositis improves I think she will be able to do that. Finally, she needs to move more…which if you know my daughter this can be a challenge, Nora (her CNA) doesn’t call her “bed slug” for fun…there is a reason!!(although it is funny)
Love this kid, let’s keep praying she continues to improve and grafting her new marrow and has NO further complications.
This is “bed slug” in action. She’s awake, just hiding because dad’s taking her pic.
I forgot to post this so it’s a little late. Sorry. +7 days after transplant, Danielle’s hair started coming out in clumps and making a big mess. “cut it mom”…she told me. I asked for scissors and Nora our CNA brought me some children safety scissors. You know the type that are short, dull with rounded tips? Yeah those ones. So I went to town, putting her hair into pigtails that I could easily cut off (not so easy with safety scissors let me tell you) and I made her bea-u-ti-ful! Ok she’s gorgeous on her own, but her hair was at least falling out in shorter chunks here on out. She loves it. Her mucositis really got bad that night, so it was a very miserable night and turned into a very miserable week which is why I haven’t had a chance to post. She was funny the next morning she woke up with hardly ANY hair left and I asked her what happened. “you know that towel you left on my pillow when I kept getting sick?” she asks.
“yea-I remember” I answer cautiously
“It felt really good to rub my head on it all night and made my hair fall all the way out” she smiles at me surrounded by a pile of hair on her pillow, sheets and blankets
This kid cracks me up. It’s the little moments right now that keep me going.
They hooked her up to morphine that day with a steady drip and a button to administer a stronger dose for times when the pain was unbearable. Like I said…tough week. :'(
Cyclophosphamide started yesterday, I guess this is some really strong chemo. She has to get up to pee every two hours and they are testing the pee every two hours too.
Threw up a lot yesterday, but now they have her on alternating anti nausea and it seems to be keeping her stomach calm (so far). I think this has been the hardest chemo treatment that she’s been on so far (and we’ve been through a lot). But she is being a very strong young woman, I’m very proud of her!
Mom & Dad on the other hand are trying to stay strong, really hard when you know your baby is hurting & fighting for her life.
PS- what does the “Day -2” mean, days to bone marrow transplant (so her new birthday will be 1-5-2017)
You all deserve medals of honor for bravery on the battle field. You have and are facing a mortal enemy. You have all done this with grace, honor, and courage. I read your last post and cried for all you are going through. And you are right, the world is a better place with our precious, one of a kind Danielle. We all want to watch her grow up and find her place in this world, as she has demonstrated such an amazing capacity to adapt and carry on no matter what has been thrown at her. She is amazing, truly amazing and she has the best parents at her side, the best hospital tending her and support group behind her. We are all praying, sending positive thoughts and love. I will be on my knees a lot during the process and have written dates down on my calendar. She will get so much loving at Christmas she will radiate with all the love. Love, Aunt Cindy and Uncle Dennis
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.
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.
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,
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
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.