Nenix Update Mar 17th – A Challenging Reality

After the elation of Nenix’s remission almost 2 weeks ago, it’s hard to face such a challenging reality.

On Monday, Mar 12th Phoenix started to feel pain in her abdomen and spiking fevers. The doctors gave her tylenol and it raised some flags because she was not on any chemo, just recovering from her last round. What that means is her immune system is very vulnerable. She basically has a tiny, if anything, immune system. So she was put on several preventative anti-biotics to try and catch any bugs from infecting her.

The next day she started taking shallow breaths around the time of the fevers. On a side note, she has an unusually high threshold for pain, we know this. And she refuses to tell us when she’s in pain. Because of this I ask her all the time if she has any owies and she gets annoyed with me. So on Wednesday, our nurse determined that she was in pain and gave her morphine because her blood pressure was high – not because she told us she was in pain- but because her body was telling us. All she does is tell us she’s sleepy and close her eyes. No complaints and still completely co-operative. My daughter is an amazing example of how a hero behaves when faced with incredible adversity.

On Wednesday, the fevers and pain came more often and they decided to put her on a continuous morphine drip. She’s been on morphine before as it seems to be the go-to for pain. Then they ordered a chest x-ray and an ultrasound which turned up nothing.

The fevers and pain started to come every 4-6 hours. The doctors still couldn’t determine the cause. On Friday, a biopsy was ordered to eliminate the possibility that the disease was causing the fevers. Thankfully, preliminary results say the disease isn’t back. The cause of the pain and fevers continued to elude the doctors.

Later that day, she had a CT Scan showing “shadows” on her lungs. Turns out she has 3 lesions, 2 on her right and 1 on her left. The good news is they think they’ve finally found the culprit. Because of where they are placed, she has to have a procedure, which is routine, done tomorrow morning. A surgeon will go in with a small telescope and a little sucker to get a biopsy of the tissue because they have yet to determine exactly what it is and therefore, how to treat it. In the mean time they’ve put her on all possible anti-biotics to cover all the bases.

The Bone Marrow Transplant process was supposed to start today. They have decided to delay it, hopefully for just a week. The risk of delaying is that this aggressive disease might grow back so we have a very small window of opportunity.

However, she can’t go through the necessary chemo and radiation to prepare for the transplant while these “shadows” haunt her lungs. Once they have the biopsy, we’re hoping that it is not an unusual infection and is quickly treatable within the week so she can go straight into transplant.

I’ll save the process of her Bone Marrow Transplant for another post. It comes with it’s own set of possible complications and I don’t have the energy for it now.

We still have a very big hurdle in front of us and now we have to take a detour with it’s own set of risks.
I know that many of you are following her progress and consistently pray and send your positive thoughts. We need some extra special stuff this week, please.

I’ll leave you on a lighter note: Five things about Nenix that make me smile all the time:

1) Hearing Nenix’s tiny voice
2) First thing she asks for in the morning these days: Doritos or video games (We play Kirby Epic Yarn on Wii)
3) Playing video games with her is fun because she’s actually very good and learns fast.
4) We have 2 TV’s in our hospital room and when she plays video games by herself she says, “You can watch news on the other TV if you want” – she is so thoughtful
5) She falls asleep while holding her Hello Kitty balloon. adorable.

We can do this guys. She can do this.


About mimidanger
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