5/14/18 BMT Day +12 VOD & PICU The worst of days.

Today started off wonderful for Reese. Her fluids were just about equal (in and out) and she woke up with some energy. We even painted a butterfly!

Then we were sent down to the ICU to put in a PICC line. This is because we were told that her double lumen was not enough access to include all of the extra VOD meds that she requires. This turned into a terrible day, for everyone involved. My poor girl, I am so upset, it just was awful.

This moment in time is etched into my brain as pure horror. My daughter’s PICC line was placed while she was under “twilight”. It shouldn’t have been placed, it wasn’t safe, she wasn’t in the right condition for that. But they felt that they had no choice, they believed things were deteriorating. After I signed a waver that I understood this was too dangerous, and that she could die, I stood in front of her. She cried, begged me to make them stop. I had to tell her it would be ok. I had to swallow my indescribable fear, look into her beautiful eyes, and say you are ok baby. Then she started to choke and gasp for air. She couldn’t breathe. My heart. Choking, gasping, choking… I stood there, stood strong. Like a mother. And told my baby it would be ok, because that is what I had to do. My husband was collapsed, in the corner of the PICU, the pure horror of the scene destroyed him. Then they sent us to the hallway to “wait”. I can not describe the next 1/2 hour. There aren’t words.

Reese pulled through, and then we were supposed to go back upstairs to the BMT floor. Except they didn’t let us leave the PICU room when the horror was over. She ended the day 500+ on fluids (so bummed) and absolutely distraught. And we are in the PICU, in the same room that she was “hurt” and she is so upset about it.

My little four-year-old keeps begging for her bed. Not her bed at home with her sister Quinn…not even her bed at the Family House… she wants her bed in the Bone Marrow Transplant Ward at the hospital. My sweet girl deserves that and more, I am praying this is a very short stay and she can have her mere wish. That was the bad news, and I am still shaking from this horrible day. The silver lining, we are getting great care and while I never wanted to spend another night in an ICU with my little girl, I am thankful for her care, and hopeful she will be strong enough to return to the BMT unit SOON.

Now for the news that is both good and bad. Her CMV has reactivated. This “was most likely expected”. But, it was not expected with VOD. The steroids used to fight the VOD increase the incidence of virus. Enter virus. Now, the medicine to cure the virus is toxic to the kidneys so it needs hyper hydration. With VOD, we are eliminating all extra fluids and she is taking lots of diuretics. You see the circle? This is a puzzle that is awful but we are in the hands of the most capable doctors, we came here for a reason, and I have faith they will solve it. Sadly I think there are more tough days on the horizon. The good part of that news- there are studies (involving AML, that our doctor thinks apply to JMML as well) that an activation of CMV during a BMT bodes well for the elimination of leukemia!! Something about cells that are activated… the point is, our goal is a leukemia free future, and this is another good indicator of that! Now our doctors just need to deliver us safely through this course, and we have the best.

Finally, the good news (that doesn’t have a bad side…) Our doctor told us that Reese is engrafting four days ahead of schedule! We have been watching her numbers pop up on her CBC… it’s very exciting! Those new cells are strong and they found cozy homes in Reese’s bone marrow to grow and grow! She is still in the process, she needs an ANC (absolute neutrophil count) of 500 for three days in a row for engraftment. But she is on her way, ahead of schedule! Now the trick is, the perfect pace.. not too fast, not too slow, grow cells grow! Please pray for God’s hand in a safe passage for Reese through this storm, into a world free of leukemia.

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