So I’ve been here long enough to know by the doctors body language as they walk through the door what type of conversation is to follow. Day in and day out things have been relatively unchanged so usually they just want to know things like the consistency of Riley’s poop and how my morning yoga class went. Today when they walked in I knew they weren’t here to talk about yoga.
Doctor: “Riley’s labs are showing positive levels of CMV.”
While that may have been an inappropriate response, it was my response…outloud. Whoops. I did follow it with “sorry about that” but judging by the way they were all vertically shaking their heads they 110% seconded my notion. Last week when they told me Riley needed chemo I dropped disturbing amounts of cash at the vending machine…”your kid needs chemo” warrants a Snickers or two in my book. That being said I am pretty sure “your immune compromised newborn now has an infection” guaranteed me a free F-bomb.
CMV is a very common virus that is usually harmless. Most healthy people infected with CMV aren’t even aware they have it. About 90% of the population is infected by age 40…it really is no big deal….unless like our precious Riley you have no immune system. For her little body it is a big deal, a big bad deal. What does this mean? Well…basically…plot twist. Yesterday she was a healthy baby with no immune system, today not so much. The hours following the news were filled will doctors coming in and out of the room explaining the changes in management, treatment, transplant, etc… The unrelated donors that we had lined up are now out the window because they were are CMV negative which is what we wanted before when Riley was not infected. Now that she is CMV positive we need a donor that is positive because that means their T cells are already trained to fight the virus. They are going to monitor the CMV levels over the next couple of days…depending on how agressive the virus is we may not have the time on our side that it takes to secure another donor. In that case we will be deciding to go with either Chris or myself as a haploidentical match and start the chemotherapy as early as next week with transplant to follow. See what I mean by plot twist?
My inital feelings…sheer terror…overwhelming, all consuming, mind numbing terror. Then came the deep breath…I’ve got myself completly trained now to just stop. Stop. Breathe. Ok carry on. I began to digest the news and was able to remain calm and receptive to the information; too much emotion and I miss everything they say. Now that I’ve got my mind as wrapped around this new development as it can get I am ok. While this infection does change things it does not change my role. I am still just Mom. The doctors are doing everything that can be done to stay ahead of this ugly thing and in the midst of that all I can do is continue to just be Riley’s Mom. Feed her well, change her pants, hold her tight, love her deeply, repeat. I have to make sure she feels only love from me, no tension…no stress…no fear. Just love….it’s all you need right? 🙂
She will now be getting an IV medication twice a day to fight off the CMV which will begin tonight, it is generally well tolerated so hopefully no side effects for her. Thursday they will draw labs to see what is going on with the CMV levels now that they have a baseline (fingers & toes crossed for a decline). I will update as soon as I have a better idea of what is next however keep in mind it may change daily at this point. Prayers, positive thoughts, well wishes…whatever your thing is…we welcome them, we need them.
To make a donation visit: http://www.gofundme.com/3x0iig
Any questions feel free to email me at firstname.lastname@example.org
You can also follow Life of Riley on facebookhttps://www.facebook.com/rileyjanebrown