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. 

Classic Danielle face…
 
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. 

We’ve Got Our Sweet Daughter Back!

Danielle has been home since November.  Her heart has some damage but she takes 15+ pills a day and we’re seeing results!  There is still no sign of cancer…she has energy.  She is starting to laugh and play like an 11 yo girl again.  This has changed her forever, but she is putting a positive twist on it and wants to give back.  We’re still working on what we’re going to do, so stay tuned!  I’m posting pics so you can see her pink cheeks and healthy glow! I threw one from the hospital to show you the drastic difference… She was so pale and look at the circles under her eyes…. Then look at her now!!!! Wow!

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Yes Danielle Has Come Home!

We finally got her released Monday afternoon (we were told Noon, but you know how slow hospitals are to release) and we’ve been holed up at home together since.

It’s so refreshing to have her home again.  We made a promise to let her “be” without interruptions or pressure.  She’s been poked, prodded, woken and forced to do things for 7 months and we let her have peace and she’s loving it!  Of course, we kiss and hug her every chance we get!

She was scheduled to get a bone marrow biopsy Friday to determine if the cancer truly is gone, but her platelets were still too low, so it’s being rescheduled soon and we should have an answer to that impending question after the test is complete.

We’ve been asked by several people when she will return to school and our answer to that is: We don’t know.  Danielle is still very weak, has low platelets and tires easily.  We may try home tutoring for a bit before she returns.  We were thinking of easing her in slowly once she does return-perhaps trying two hours a day, three days a week at the beginning until we get her on a full schedule once again, but I can’t see that happening until after the first of the year.

Needless to say we are beyond happy to have our baby girl home with us once again!!