Day Plus 48: Our Seat Belts Are Still Fastened

by Jana

Oliver ended up being discharged from Primary Children's Hospital Day Plus 32 of his bone marrow transplant ("BMT") process and we were once again together as a family living under the same roof. Then we weren't. Then we were. And now we aren't. This is definitely within the realm of what we were expecting during the first 100 days post-BMT. It has just been a bit harder than we had hoped it
  Oliver enlisting the "help" of his littlest sister
to make Cassidy's cake.
would be.

There is no point in focusing on or complaining about things you cannot change. Being negative, grumpy or mean doesn't change things and only makes you less happy. Being realistic, while focusing on the good, keeping a positive attitude and being kind makes you happier and allows for more opportunities to have fun. Oliver believes this with all of his heart. Watching him consistently live by this day after day, even and especially during this past year, has profoundly changed our hearts and our lives. That said, those of you who know me and Bill know that even though we are true believers, we are still imperfect followers. At least we try.

On a joyous note, Oliver made it home just in time for his little sister's fourth birthday. This was a huge deal.

Last year Oliver was just newly diagnosed with AML and in the ICU when Cassidy turned three. Oliver took not being able to celebrate her birthday together as a family way worse than going blind for a month. Seriously.
Cassidy and her cotton candy birthday cake
that Oliver invented for her.
An amazing PCH child life specialist went to great lengths to help him make Cassidy's birthday special and even took the time to prepare Cassidy for seeing Oliver hooked up to machines and wearing an oxygen mask so he could give her his homemade gifts to her in person. Anticipating that baking or even shopping for a cake would be beyond our capabilities (which, sadly, it was), people from our church dropped off everything for a ready made party. Our friends decorated and saw to it that Cassidy had a proper party at home. Cassidy was thrilled. Oliver was relieved, but still really regretted not being all together for her birthday. This summer when Cassidy said she wanted a cotton candy cake for her birthday, Oliver was all over it and come up with a plan for making it happen, factoring in the real possibility that he would still be inpatient. That the Red Button cotton candy ice cream cake layered with cake batter waffles, dollar store cotton candy and raspberry cream cheese frosting became a reality and we were able to spend a whole weekend celebrating Cassidy at home with Oliver is a gift we will not soon forget.

On a not joyous note, since the last update, Oliver has spent time at PCH every single day except two and has been completely inpatient a total of eight days. He is now being treated for a confirmed case of acute Graft vs. Host Disease ("GVHD") of the GI tract. Basically, his brand new immune system generated entirely from his donor's bone marrow is misrecognizing Oliver's GI track as foreign and thus attacking it. This is a really bad thing and has taken a toll on him. Oliver was already on immune suppressants to try to prevent this from happening. Now, he is also on steroids to try to further suppress/quiet down his new immune system so it will stop attacking him. We will not know how bad things are or what stage of GVHD he ultimately has until we see how he responds over the next few days. To complicate matters, although Aspergilliosis has been ruled out, Oliver is already being treated for another suspected fungal infection in his lungs that had looked like it had mostly resolved. He is continuing to fever and is now having respiratory symptoms along with continued unidentified infection/blockages visible on lung scans. Further suppressing his immune system will not be helpful in fighting whatever infections he may have.

We are asking for all hands on deck to pray that Oliver will be responsive to the steroid treatment and that his other infections will resolve or at least stay at bay. He will not be able to attend the Party In The Park this Saturday, but he will certainly be there in spirit. We continue to be comforted by and grateful for the love and support that continues to be sent our way. Thank you!

Leaving the hospital post-BMT.  For the first time. 

Playing Go Fish during his first post-BMT hospital readmit. 

Sporting Uncle Stayner's hat on the way to his
BM biopsy, packing his IV nutrients.  

Oliver at home injecting vitamins for his daily IV nutrition
infusion before hooking up the pump himself. 

Oliver's ceiling decor.

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