Believing For Desi – UPDATE

Believing For Desi – UPDATE via her FACEBOOK Page.  Make sure to Follow her recovery via the Believing for Desi’s Facebook page.

Last round of chemo started last night. She got about a day from when her chest tube was removed to make the best of things before chemo began.

Believing for Desi facebook Cover https://www.facebook.com/Believingfordesi

Not the idealistic situation, but then again, nothing about this situation has been. Everything that comes with chemo, HAS come.
Last night, Desi was up until 2 am, she had not taken a nap at all, which made for a very grumpy bear. Then from midnight on, she was extremely hungry and highly irritable.

We have been asking the team to decrease the morphine in both her continuous fluid line and her pca pump. She’s now weaned off more than half of her dose. We hope by tomorrow she’ll be off of it completely.

Late Saturday night, the last of the chemo for this round will finish. Sunday morning we will be discharged and return back to the Ronald McDonald House to continue searching for a charter flight back home by Wednesday.

A baseline EKG was done prior to the start of chemo yesterday just to check heart function as Vincristine, Doxorubicin and high dose Cyclophosphamide are known to cause heart issues. Desi’s was great!

They’ve also done an X-ray on her left proximal femur as that is where there is still “stubborn” disease left and they wanted to see the condition of her bone, make sure it would be safe for her to continue low to moderate impact activities, especially the ones that she really enjoys, like jumping on her trampoline and ice skating. The x-ray showed no holes in her bone and it looked good.

There was a very faint weakened bone spot above her left knee but they’ve reassured us that so long as she does not complain of pain there, then just be cautious.

Terry & I monitor and make mental notes of every pain or discomfort she complains of. We then think immediately of each of her scans and recall if she had ANY metastatic disease there prior to diagnosis. It’s constant anxiety.

She’s had 2 or 3 chest x-rays in the day(s) after her surgery to monitor any fluid in her lungs and the progress of her lungs re-inflating. She had, which isn’t uncommon, a partially collapsed lung, pneumothorax and pleural effusions on both the left and right side. Apparently this all dissolves on it’s own and if it didn’t, or got worse, she would be complaining of chest pain and shortness of breath.

https://www.facebook.com/Believingfordesi – Believing for Desi via her Facebook page

Also, I wanted to update everyone on the spine issue…

In 3 weeks, we return to Sloan to begin 2 days of scans & her 4-point bone marrow aspirate. It will be then that decisions will be made on the issue of the sacral canal on her spine.

CT has specifically stated that soft tissue fills the cavity. MRI has said spine is good. Conflicting is definitely frustrating but we understand the scans have different purposes and will show different things.

BUT… we were told that MRI is the best to show of any concern to her spine and that hers, “is as good as it gets”.

So, we want to know if the soft tissue is still there when we scan in 3 weeks, who’s removing it and is it NB.

She’s had one fever throughout this all, which is fantastic! The not so fantastic part was that when a fever spikes here, they not only draw labs from their port or central line but in a peripheral vein too, to send off to culture.

She just had both her peripheral/arterial iv’s removed and now she was getting poked AGAIN. I cannot put into words how much it hurts that she has to continually get poked.  And here’s another Sloan difference… Here, they re-access your port every 7 days.

She had hers accessed last Tuesday and luckily creeped by for an extra day before a nurse caught it.

Yesterday and today, we have really been missing our sweet, happy, smiling little girl. It’s hard to watch your child’s personality transform into a person you don’t recognize and even harder to not want to grab and shake them out of it and hold them and hug them until they’re your baby again…

One group I am a member in is Momcology. Another member was offering to create “Go Gold” badges for our kids fighting this battle and they’ve created one for Desi that I have posted.

PLEASE use this as your profile photo for the ENTIRE month of September to not only honor Desirae, but to honor and acknowledge ALL fighters of Childhood Cancer!

Also, tomorrow (it’s up on website tonight), the Press Enterprise is running a wonderful article on Desi. Please check it out. Thank you Julianna Crisalli! It’s a well written and extremely informative article.  Here is the link:  https://m.pe.com/articles/desi-749038-cancer-treatment.html

Thank you for ALL of your continued support and unconditional love for our daughter.  We are excited for OUR month! Only two more days before we Go Gold for ALL of September!