Thursday, 13th October 2011 (T-6)

 

***A NOTE ABOUT THE TITLE***

From now on, I will be including the letter “T” followed by a –/+ number. This indicates the following:

T=Transplant

-/+ number=the days until and post transplant. In today’s case, –6 indicates 6 days until transplant (Miya’s transplant is next Wednesday). Transplant day is day 0 and each subsequent day will appear as a positive number. (For example,  the day after transplant will be T+1.)

Today was a very busy day. Miya began the day with a good breakfast, but steadily lost her appetite throughout the day. She will be fed special nutrient rich milk through her NG tube overnight, for 12 hours to make up the nutrients and fluids she did not eat/drink.

We were told today that up until Sunday evening, Miya would be free to go into the play room on the ward but that has now changed. She has a bug called C Diff (Clostridium Difficile) in her stool and we are now in isolation. C Diff is a bacteria naturally found in the gut of around 2/3 of children and 3% of adults. It doesn’t pose problems in healthy people however it can multiply and produce toxins causing diarrhoea and fever. Miya won’t be treated right now, the isolation is just a precaution.

Today, we continued Campath (the drug that causes massive breakdown of the T and B Cells-Types of cells that protect the body from infection) and started a chemo drug called Busulfan. Among other things, this drugs attacks the bone marrow, creating a tunnel for the new marrow to reside. 

A volunteer called Margaret (a lovely Irish woman) came today and sat with Miya for an hour while Chris and I went out to food shop and have coffee, etc.  Miya did well and was sleeping when we came back. 

Tomorrow, Miya will continue the Campath and Busulfan. She will also begin a chemo drug called Fludarabine. This drug also attacks the bone marrow.

Miya is not her usual self and likes to sit quietly on our knees most of the day. She likes to run around a play a little in the day but by the afternoon, she  seems to be exhausted.  She has also developed an umbilicus hernia, where her umbilicus is popping through her abdominal wall. This is quite normal, I have been assured.

 

Umbilical Hernia                                                            With Volunteer Margaret

A More Detailed Update

 

We arrived on Fox Ward at Great Ormond Street Hospital on the 10th of October and were admitted for BMT.  A small amount of fluid was suctioned from Miya’s nose and tested for cold & flu viruses. If any viruses were found, we would be sent home and the BMT rescheduled.  Since they are eradicating Miya’s immune system to make way for new bone marrow to be accepted, it is not a good idea to continue with a transplant if her body is fighting  off infections, etc.

I was reluctant to unpack until we got the results of Miya’s virus tests, but after several hours in a small room with everything in suitcases I broke down and unpacked. Thankfully, around 1800hrs, Miya’s tests came back negative and we were cleared to proceed.

Miya began receiving many prophylactic medications via syringe on Monday evening. She received medications to protect her kidneys, to protect her liver, an anti-nausea medication, and some antibiotics.

Since chemo can cause a breakdown of the mucous membranes – called Mucousitis (all the way from the mouth to the bum) we have to clean her mouth four times a day.  We brush her teeth twice a day, and swab her mouth twice a day with sponges soaked in a mouthwash solution.  This helps to prevent mouth ulcers and other nasty things that can happen when mucous membranes begin to break down.

Miya had an NG tube (nasogastric tube) inserted yesterday. Through this, she received her oral medications. Some of them are particularly nasty tasting and having them down the NG tube avoids her having to taste them. Also, it is easier to insert it now, while her mouth is not affected by chemo, than have to do it while she has a sore mouth.

Miya’s weight is good (12.05kg / 26.5lbs) and her appetite remains healthy.  She had her fists dose of chemotherapy administered yesterday, infused very slowly over a long period of time (8-9 hours).  She also received a dose of pethidine (demerol).  She takes drugs prophylactically each day, several times a day.  The chemo she is on presently is called  Alemtuzumab, more commonly known as Campath. This is a chemotherapy which destroys Miya’s T-Cells and B-Cells (involved in white cells counts, and relate to immunity).  As the T-Cells break down, they generate a lot of heat. It is not uncommon to develop a fever, which Miya did. It was treated with paracetemol (similar to Tylenol) and steroid. The fever began to come down and was just about normal when Miya went to bed. 

Because the chemotherapy chemicals are excreted in waste products, Miya’s bum is beginning to be sore and I change her bum every two hours or more. I use a special cream to clean her bottom and a special barrier cream to protect against diaper rash, etc.  Also, as chemo can thin and dry the skin, I have to bathe her in a solution of water and a special oil, and then slather her in a special cream.

Miya has observations done throughout the night (every four hours or so) and although she wakes up, she is very quiet and doesn’t cry. She goes straight back to sleep.  The bed where I sleep is separated from the main room by a curtain, so Miya and I both have our own space at night.

Miya’s second dose of Campath begins today between 1200hrs-1400hrs and will run at a slightly higher rate than yesterday.