More Bumps in the Road

Today is Day +242 post transplant for Alyssa, and there are still many bumps in the road for her. I have not been able to update until now as we have been so busy being in and out of the hospital and many check ups with her oncologist.

Alyssa was admitted the weekend following her birthday. She was breathing very fast, short, and loud. We first called the on call oncologist, who made sure there was a room ready for us in the ER. When they checked Alyssa’s vitals, we were very shocked at the results. Her temperature was good but her O2 saturation level was only at 82%, she should be 100%, and her breathing was around 90 breaths per minute and she should be around 30 per minute. It was very scary, and they started with doing bloodwork, put her on a broad spectrum antibiotic, and gave me a little tube that blew out oxygen to hold up in front of her face to help her breathe easier. Alyssa won’t keep the nasel cannulas on her face so that was the next best thing to do.

We eventually got a room back in good old’ 3B ward, where Alyssa spent half of her treatment. Being wheeled back into there just made my heart and stomach sink and ache. Alyssa had a chest x-ray, and an ultrasound of her heart done. The x-ray seemed to be clear, but the ultrasound of her heart showed there was a mild case of fluid around her heart. It was heart wrenching to hear those results but relieved to hear that despite her breathing difficulties and the fluid, her heart is functioning normally. A big fear that the doctors had was that Alyssa’s body would tire out and so she was monitored closely and had many different visitors coming in to check on her.

They doctors decided to put Alyssa back on a therapeutic dose of her immunosupressant drug and also raise the dose of her steroid to a much higher dose. Her breathing seemed to improve, though not back to normal, there was improvement. The doctors felt that Alyssa may be suffering from GVHD of the liver as well as the lungs.

Alyssa was discharged after her things had improved and a week later we were off to St. Jude in Memphis for a check up. Alyssa had another chest x-ray, heart ultrasound, a dental check up, an eye exam, and a visit with her clinic doctors. Her bloodwork looked ok and the x-ray showed a bit of thickening of her bronchials. They believed it may be caused from something viral that she may have had, but couldn’t be sure.

A couple days after arriving home from Memphis, the plan was to start decreasing her does of steroids. A few days later, Alyssa’s breathing started to slowly increase. As the days went on, and her breathing rate increased, the decision Was made to put her steroid dose back up to where it was until further tests were done.

Alyssa was admitted early last week in order to be sedated for a CT scan of her lungs. We were lucky enough to be discharged late the following night. The results showed sporradic patches on her lungs, which the doctors at McMaster Children’s Hospital believe it to represent GVHD of the lungs. If this is the case, she would be considered to have chronic GVHD, which is much more difficult to treat. Her liver enzymes are also continuing to increase, and are once again in the critical range.

The doctors here have sent the doctors at St. Jude, the copy of Alyssa’s CT scan on a disk, so that their radiologist can have a look and give his opinion. I have done the worst thing I can do, and I have researched GVHD of the lungs online, and of course, I have come across the worst possible outcomes. I am really hoping that this will all be under control soon, Alyssa can breath easy again soon, and that there is no permanent damage to her lungs and liver, which is a very likely possibility.

We will be returning to St. Jude in Memphis, in a few weeks. We were told to stay a bit longer this time, incase tests need to be done and there is a chance of a liver biopsy to confirm GVHD of the liver.

Alyssa will be going to her clinic visit on Wednesday, here at MacMaster and I am really hoping that we will have more answers and a possible treatment plan.

After everything she has gone through, she kicked cancers butt, but now she has to suffer from the side effects of the treatment and we are not sure what the outcome is going to be. It’s so scary, she’s just not getting any better.

One Response to "More Bumps in the Road"

  • We are so sorry you are all going through this. Be strong…we are sending positive thougts your way. We think of you very often and hope you are all hanging in there 🙂

    1 Jennifer Patterson said this (November 17, 2012 at 1:13 pm) Reply

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