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.

It’s Go! Go! Go!

 

This is going to be the quickest blog update ever.

 

Miya passed her snot test yesterday and we began chemo today. The chemo is still infusing slowly, and there’s about a half hour left to go.  Miya spiked a temp (38.2 C) which is normal as her T-Cells produce heat as they break up. This is being treated as per normal protocol with paracetemol (UK version of Tylenol) and  steroid. 

 

Miya continues to eat and drink normally. She does, however, have a red bum due to the chemo chemicals being excreted in her urine and faeces. We are treating this with special cleansing agents and a powerful barrier cream. 

 

Miya is examining Simba with a flashlight right now, and earlier, she tried to feed him a biscuit.  She is in high spirits, although earlier today when she was given Pethedine (aka Demerol) she was a zombie for a while, and then fell over several times when she tried to walk. 

 

Miya was given an NG tube today, which made me have to go to the other end of the room and look away.  It wasn’t cool.  She’s fine with it now, and isn’t really picking at it.  She’s more interested in what’s going on with her Hickman line.

 

Off to put Miya to bed now.  Will update as and when I can.

All Systems…Go?

Can it be true?? The donor passed her medical? We have a bed on Fox Ward? 
We received confirmation today via the lovely Helen who works in the BMT department that the donor passed her medical with flying colours.  We have a confirmed bed space on Fox Ward at GOSH and we are to be there for admitting no later than 0900hrs on Monday morning.  On Monday, Miya will have a sample of nasal fluid taken (the polite term for “snot”) and it will be tested for the cold and flu viruses.  The results should hopefully be in Monday night, but most likely Tuesday morning.  If Miya is carrying a cold or flu virus, we will be sent home and the transplant will be delayed yet again. (Picture me with my grumpy face on.)

We are taking our dog to the dog-sitter’s in the morning. He’ll stay with them until our discharge.  Poor Mr. V. 

Tomorrow will be ERT no. 30 and our final trip to Kingfisher ward (I hope).  Miya will continue to receive ERTs on Fox ward until her donor cells engraft and she begins to produce her own enzyme. 
Apparently, there have been small amendments to the protocol, and we will be advised of these changes on Monday during our admission process.  As far as I’m aware, chemo will begin on Tuesday the 11th of October and Miya will receive her donor cells on Wednesday, the 19th of October.  The donor’s marrow will be harvested in Germany on Tuesday the 18th of October and air lifted to London. Miya will receive her new cells on Wednesday, the 19th of October, two days before my 32nd birthday.  What a fantastic birthday present to receive…my daughter’s life. 

Please think of my family, faithful readers, as we travel to London early tomorrow morning, and again early Monday morning.  I WILL be updating the blog with new information and a progress report as and when I can.  I am going to try and blog every 3 days or so, depending on if I have a spare moment. 

Miya Laughs

Time Keeps On Tickin'

I haven't written in a while, so I thought I'd write a little update.

Not much to report, really.  Miya started walking on her own on Sunday the 11th of September.  I was making brownies in the kitchen at the time. By the time Chris got over the shock and awe and called to me, she had made it all the way across the living room. I caught her walking into the TV stand.

Miya has also started saying "what's that?" and pointing at various things. She can point to her toes when you ask her to.

We got Miya's chemotherapy protocols on the 9th of September. This is basically a schedule of the different drugs she'll be taking and we also went over the side effects of said drugs. A couple of things which struck me are these:

1)  A donor and a recipient may not necessarily have the same blood group. Blood groups need not match in order for tissue types to match.  The thing that amazes me is that by the time the transplant is over and Miya is out of semi-isolation at home, Miya's blood group will have changed to match that of her donor's.  Miya is currently O+ (like Chris and myself) but will turn O- (like her donor). 

2)  The second thing (which is more interesting than it is amazing) is that since chemotherapy changes the skin, Miya will have to wear sunscreen for life, even in winter. The importance of this was stressed to me. Long sleeved shirts, big hats, LOTS of sunscreen. 

We also know some information about our donor. The donor is female and a German. She is 50 years old and weighs 60kg.  I also know that in order to be deemed fit to donate (from her failing medical back in July) she had to go through many, many, many kinds of tests and procedures. Apparently the work-up this woman had was phenomenal. She could have said "No, never mind" or "I can't go through with these tests, remove me from the donor registry" but she didn't. She gave up a lot of time and went through a lot of medical testing just to be able to be cleared for donation. To save Miya. How do I find the words to thank this woman for all she has done?

Want Some Chicken?

We've all been sick with a stomach bug and for the first time ever (even as a little baby) Miya threw up. In the car. All over her car seat. I can't get the smell out and I'm tired of trying every piece of advice someone gives me about how to get the smell out. It ain't comin' out.  Nan H and Grampy Green (my parents in Canada) have generously agreed to buy Miya a new car seat. 

So we're on a countdown now. 20 days until admission for BMT. Three more regular ERTs on the ward.  In the words of the iconic Steve Miller Band, "Time keeps on tickin' tickin' tickin' into the future....Tick, tick, tick, tick....

I'll Take A Large Double Double With Milk & A Snack Pack Of Timbits

Nothing much to report from the Hulse household.  I had my  lump checked out at the Breast Clinic in Bath and was told that the breast tissue felt normal (whew, big sigh of relief). An ultrasound is going to be performed at a later date, just for the sake of completion, but I'm confident everything will be fine.

Miya and I have had HORRIBLE colds. Miya is not a cuddly child, so I knew she was sick when she wanted to cuddle between us in bed last Thursday and Friday night until she fell asleep.

This Friday at our regular ERT, we are meeting with Helen, the BMT nurse, to go over Miya's chemotherapy protocols.  We start Itraconozole AGAIN this Saturday. (Itraconozole is an anti-fungal medicine that is given daily one calendar month prior to transplant to kill any fungal infections that Miya might have.) She'll get 5.5ml per day and it tastes like shit.

Miya took her first unassisted steps on Kingfisher Ward last Friday. She hasn't done it since; she just wobbles around like a drunk when I try to get her to walk unsupported. 

We also have some potential good news on the accommodation front. It is possible that Chris may be able to stay at Wellington Barracks in London for the duration of the BMT.  It would cost us very little (if anything) and it is only a 15 minute walk from the hospital, close to Buckingham Palace.  I'm hoping to find out more this week. 

As for me, I am missing Tim Horton's, Wal Mart, repeats of The Red Green Show, and the old music from Hockey Night In Canada. I also miss old reruns of Degrassi Junior High and Trailer Park Boys. If anyone should have a box of Canadian cultural classics, mixed with a friendly smile and some of those squee-gee things from gas stations (non-existant in this country...imagine wanting to clean your windshield at a gas station!!) please send them my way.  I'd also like a box of Ganong Cherry Chocolates, some Hershey Kisses, and a snack pack of Timbits. And a Large Double Double with milk. Oooo! And how about some Baxter's Chocolate Milk, eh?? Please?? Am I ever going to go home again??