Wednesday, T-0, was uneventful in terms of transplant. Miya sat quietly while the cells were being infused. She smiled and laughed a lot and had a milk feed through her NG tube overnight. The tube came out overnight and was reinserted the next day. Miya was also difficult to settle.
On Thursday, T+1, Miya played well in the morning and ate a lot of custard. She gagged and vomited a little when the NG tube was being inserted. Her food intake was low, and steadily decreased throughout the day. Miya slept well and had a milk feed thorough her NG tube during the night.
Friday, T+2 was my 32nd birthday. Lisa came from Odiham to spend the day with us and to look after Miya for a few hours. Miya had a boost feed of milk through her NG tube at supper time and her regular slow milk feed throughout the night. Chris stayed with her overnight in the hospital and I stayed at the flat.
This morning, T+3, we were advised that her white cell count is now zero and her red cells and platelets are fine. The white cell count will remain at zero until the engraftment process begins and the count will begin to rise. During this time, Miya may become quite ill and have fevers. This is all normal and to be expected. This morning, Miya showed the first signs of being unwell when she didn’t wake until nearly 1100hrs. She has returned to sitting on our knees, rather than running around and playing as she has been doing over the past couple of days.
She received the first of two doses of a drug called Methotrexate, which helps to prevent Graft vs Host Disease (GVHD). GVHD is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted cells attacks the recipient’s body. Symptoms include:
Abdominal pain/cramps, diarrhea, fever, skin rash, vomiting, weight loss. A rash seems to be the most common symptom and we are watching closely for this.
Many people are unfamiliar with the importance of staying germ free during transplant, and don’t think twice about doing things that we constantly have to give thought to. For example, our bedding has to be changed every day. All of us must shower and wash our hair each day. Miya’s cups are sterilized and she can only drink cooled, boiled water. Her teeth and mouth are cared for using sterile water and each day, a new toothbrush is used. Mouth swabs for mouthwash (to prevent mucositis) are one use only. Each article of clothing we put on has to be clean and dried in a high heat tumble dryer to kill any bacteria. We must all put on clean clothes in the morning, and all clothes we wear to bed also must be fresh and clean. Hands must be scrupulously washed and hand gel applied when we enter the room and leave the room and when we enter or leave the ward. Hands must be sanitized upon entering and leaving the kitchen facilities. We have to wear white plastic aprons over our clothes.
A trip to the kitchen looks like this:
Take off apron in room, wash and sanitize hands. Leave room. Wash and sanitize hands on the way out of the ward. Sanitize hands before entering the kitchen. Sanitize hands when leaving the kitchen. Wash and sanitize hands coming back on the ward. Put on plastic apron. Enter room. Wash and sanitize hands. I must admit that my OCD is a little out of control right now.
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