Day 4 thoughts

The wacky thing, it's day 4, but since we weren't admitted to the hospital until Monday evening, we've been here less than 100 hours. And yet everything is now turned upside down. 100 hours ago we were concerned about getting Alan an appointment for hernia surgery before it got too painful. Now we would give anything to deal with just a hernia.

We've been talking to a lot of people from the hospital today. Child Life advocates explaining the port and life with chemotherapy. The hospital chaplain came by to introduce herself and offer her support. The nurse advocate came by with a binder which is basically a primer and organizer for families of children fighting cancer. She'll help us with educational materials once we confirm the type of tumour. And there's still the case manager and social worker worker to come.

I've had a few amusing photos with a wet diaper in the background, encased in a biohazard baggie. We need to keep Alan's diapers for the nurses to weigh so they can track his fluid intake and output. When I change his diaper in another part of the hospital, they don't have the plain bags so they give me a biohazard bag instead. Now I could make a joke about toddler poop, but the thing is, while he's on chemotherapy and for 48 hours after, I'm going to have to change his diapers every two hours with gloves and dispose carefully. That's because the chemotherapy drugs, after circulating through his body, will be eliminated into his diaper along with all the usual.

Just one of the ways life is going to change. We'll figure out more of the changes as we go along.

Hands free

After a couple of hours delay, Alan finally went into surgery for a bone marrow biopsy, medical port installation, and a biopsy for a larger section of the tumour for more extensive testing. The surgeon explained that the first biopsy, done through a needle, could only collect a small amount of cells, and ran the risk of collecting "dead" tumour cells. This morning he collected several cubic centimeters of the tumour, giving the pathologists much more to work with.

When we saw him in recovery around 1 PM, he was sleeping rather noisily on his side, with a mask blowing oxygen. He was beat.



We returned to his room around 2:15 and after a nice heavy nap, Alan woke up to drink some juice and water. Now he has the port, they were able to take out the IV and splint on his left hand. Free at last!

Waiting

We're waiting to get into Alan's surgery. Not only will we be putting in the medical port and doing a bone marrow biopsy, now we are also going to do a more extensive biopsy of the tumour. One of the pathologists thought that it might not be the rhabdomyosarcoma and wanted a larger sample to test.

It doesn't change the form of treatment, but will affect the mix of drugs they use if it is a different type of tumour. We won't know whether Alan's chances or better, worse or the same until we get the results. So we'll be waiting for those results hopefully today.

One thing that we aren't waiting for (and this might be TMI for some people, so continue reading at your own peril) is for Alan to have a bowel movement. He hadn't had one since Monday morning at home, and we were starting to get a little concerned. A little milk of mag in the wee hours of the morning and we had not one, but two poopy diapers later on. It's amazing how pleased parents of a baby, especially a sick one, can be by something so simple.