Counts for May 1st: WBC .8 same as yesterday, RBC 3.87 sameish, HGB 11.2 same, HCT 32.5 down a little, PLTS 59 down a little, ANC 0.0 down. I know all of that makes no sense to most everyone but it basically means even with a couple of neupogen shots on board there is no sign yet of his counts recovering at all.
The skin docs came today to see Ty's lip. They ordered all sorts of new tests for him which were going to entail peeling off the scab, scraping the tissue underneath for a bunch of cultures, and then possibly a biopsy if they couldn't get any results from that. They said the biopsy would probably leave a scar and they would have to probably wrap him in something to be able to do it cause it would be heinous. When they left I was not happy, I felt we were going to have to hold him down and torture him for something that was probably not going to get any results because of how well the lip has improved (all that is left is a big scab) and how long he's already been on antibiotics and antifungals. I was ready to tell them to take a hike when they showed up this morning to do all of that.
So I asked to see one of the oncologists and explain my concerns to them and find out more about why they insisted on being so invasive.
The resident that came to talk to me agreed with many of my concerns and took them back to infectious disease who ordered the skin docs in the first place. Infectious disease agreed that scraping and cultures probably would not grow much with all the medications he has been on so they decided not to go through with that slew of tests that the dermatologist ordered. Whew.
They are however going to do the biopsy, but they are going to do it in the operating room under anesthesia (yes, I do love being at a children's hospital where they understand that they need to minimize the trauma these little ones have to go through) and they are having people from Ear Nose and Throat do the biopsy instead of skin docs. Don't get me wrong I don't hate skin docs, in fact I have a special place in my heart for a cousin of mine who is a dermatologist. These particular skin docs that came in...I'll be happy to never see them again.
Anyway, Infectious disease does think the biopsy is necessary because they need to rule out a fungus called Aspergillus (click on that for info on it) a very common mold that can kill immune compromised patients if it is able to get in and take hold somewhere. Now that I know more about it and the dangers of it I agree that they need to do the biopsy and find out what it is.
Poor Ty and his lips, they never get a break!
So we go in for surgery again today at noonish and would appreciate your prayers again. Although it is a simple procedure his counts are extremely worrisome to me. I asked if they could wait a couple of days and see if his counts come up a little first and they said they ideally would have had this test a couple of days ago and are going to start him on the antifungal that specifically treats aspergillus as a precautionary measure as soon as he is out of surgery.
They are also suspicious about what is growing on his lungs. They don't have a good way of telling what it is just by the CT scan, they just know there are spots on his lungs and they think it is some kind of fungus. The fungus that grew out of his port is yeast, candida albicus, which is the most common type of yeast, it is what causes thrush, diaper rash, etc. But obviously is much more serious when it is in the blood. They aren't totally convinced that that is what is growing in his lungs.
The oncologist said yesterday that she would like to see a picc line put in before he goes home since he will be going home on IV medications so I think their initial estimate of 4 or 5 more days was way too optimistic, they were probably just wanting to make me feel good for a minute. I think he has to have clear cultures for 72 hours before they will put in a picc line.
Long story short I spent the day mad, woke up at 4:00 this morning mad, and I'm still mad. I'm mad that at a time of treatment when we should be living a somewhat 'normal' life we are in a potentially worse situation now than we were at diagnosis. I have a friend down the hall who's son had a bone marrow transplant a few months ago. He is recovering from the BMT itself marvelously, but has pulmonary fibrosis a very serious lung disease now because of the chemo he was on before his BMT. We met with a family today who's little girl was diagnosed with ALL the same day as Ty and she now has AVN from the steroids. I could tell you story after story after story of the devastation we hear about and see. Don't get me wrong, there is a lot of good, but in this world the lows often outweigh the highs.
It is totally awesome how far they have come in cancer treatments over the past 40 years but we have a LONG way to go. The side effects of the treatment for cancer is heinous and over 2/3 of the kids who survive cancer live the rest of their lives with side effects from the treatment. It makes me mad, not at the doctors and nurses, they are awesome for what they do, mad that all 12 major Childhood Cancers are lumped into one category, and that one category gets 1-4 percent of total cancer research funding. I know I know, you probably aren't even reading anymore cause I go on and on about this and very few seem to care that aren't directly involved in it but I have to vent about it somewhere and this is my venting spot. I wish the whole world would watch the pie video and see what's really going on and help us. We can't make a difference without the help of a whole bunch more people than just us cancer parents. Will you pleeeeeeaaaaase watch the videos and help us help CureSearch?
All of the children in the video below are from our mommy group 'Utah Moms with Cancer Fighting Cuties'. Some have passed away since this video was made last year.
For my records: he is on zosyn, vancomycin, voriconazole, caspofungin, and they will start amphotericin B today. They discontinued acyclovir when the herpes culture came back negative.