Rebecca was admitted to the hospital today. We have spoken to the MD in charge, and we were told that Rebecca will start her chemotherapy today.
She will be attached to the IV machine at noon.
Every day Rebecca has to be washed with disinfectant, have her temperature and blood pressure taken, and have blood samples drawn.
She is still acting normally, smiling, eating, and she seems interested in what's going on in the room.
We had to give her a stomach tube because of all the medication she has to swallow. She hates it and pulls it up at every chance she gets.
The 1st of May
From today, Rebecca has to be in isolation. That means that everybody has to wear gloves and surgical masks every time they go near her. All of her toys must be sterilized as well. Furthermore, she must be under a kind of reverse cooker hood at all time.
She is now getting worse, crying a lot, feeling sick, having diarrhea, rashes and pains. It's so hard not being able to help her more.
The 7th of May
Rebecca will be receiving her new bone marrow today. We all feel exhilarated. It's like giving birth again.
At 5pm her new life arrived by plane from Germany. It turned out to be two bags of reddish liquid.
It was a very emotional moment when the nurse started the transfusion. We just sat there waiting for it to end.
Rebecca is doing fine. Even though she has started having trouble eating she is still able to play and smile.
The 12th of May
Rebecca has had some bad days. The blood count is no good. One of these days she will need platelets.
She has an ulcer now and has started on morphine, because of the pain from the ulcer but also because of diarrhoea.
The food and liquid that we give her has to be sterile, mostly tinned or frozen, and prepared by us in the microwave.
She is still eating a little, but we are talking about starting on total parental nutrition (IV TPN). If so it will go into the Hickman tube.
The nights are OK. She only cries a few times, mostly when she needs to have her diapers changed. It is harder for us, I think, because we get disturbed every time the nurse looks in on her. And the noise from the ”cooker hood” keeps us awake.
The 17th of May
Rebecca is now so nauseous that she has stopped eating and is on full IV TPN (total parental nutrition). Her bottom has a big sore because of medication and diarrhoea. It looks like a large cigarette burn . We have started to give her Forex (diuretics); she was retaining too much fluid.
Rebecca is now in need for red blood cells and platelets almost every day.
She is sleeping a lot, and she is not easy to keep happy when she is awake. When she is awake her favourite position is in foetus position.
The 20th of May
The maximum discomforts of the BMT have finally struck Rebecca: Vomiting, pain, diarrhoea, nauseous, mucus, headage, rash, fever, and stomach ulcer.
The good news is that the sore on her bottom is healing and that we can se her blood count going up.
Her leukocytes can for the first time be measured.
The bad news is that we from now on have to watch out for Graft versus Host Disease (GvHD), which can be fatal.
The nurses have been giving Rebecca’ potassium in her feeding tube because of her diarrhoea. But it makes her vomit every single time, so we hope she can have it by IV.
The 23rd of May
Even though the blood count is getting better, Rebecca’s well being has not improved. The only visible thing is her sore, it has almost healed. Her leucocytes are 0.5, so we are on the way. That means the new marrow cells has started to appear, or "take". This may require treatment with immunosuppressant drugs (Cyclosporin) so that she won't develop GvHD.
She is still getting red blood cells, and plateles. The other night she slept on a pacifier; the result was a huge lump, the size of a cherry.
Rebecca is having a hard time. She cries for hours, and we do not know why. It may be because of the many medications she gets.
The 29th of May
Still no GvHD, and so far no infections at all. Rebecca is more awake now, but she still has those horrible “crying fits”. We have not found the reason yet.
She still has her blood drawn twice a day to check the level of Cyclosporin in her blood and the counts of white cells and, later, neutrophils.
Rebecca has started to eat a bit. It seems like she is feeling better afterwards. We have had to take a break from her IV TPN; she was getting too much fat in her blood.
The leukocytes are still increasing (1,9), but it is mainly monocytes that are growing. We are still waiting for the neutrophils to reach 0,5.
The haemoglobin percentage is 5,4 which means no more blood transfusions.
The 1st of June
Yes! Finally, Rebecca’s neutrophils are 0,59. That means that we are out of isolation. No more gloves, surgical masks or hospital clothes.
I have been touching her all day; the very feeling of her skin makes me cry. It’s like a miracle: Open windows, fresh air, silence and an MD with a flag.
We have had the whole family in for a visit. We went for a walk in the park; it almost made us feel like criminals. The next couple of days will be the tough ones: Will she eat, can we get her off the morphine, and how about her “fits”? Well, only time will tell.
The 5th of June
Rebecca has pulled her Hickman tube out during the night. God knows how? The MD had never seen it done by such a small child. What a bloody mess! She has to have another one put in.
Well, other than that, we are enjoying our daily walks in the park. Rebecca is still not eating enough, and she still needs her morphine.
She is more awake now, smiling, playing, and the sore is healing.
The 8th of June
Rebecca is going home for the weekend. If she is still doing fine Monday, then we can keep her at home.
Rebecca was discharged from the hospital on Monday the 11th of June.
A month later we solved the problem of her “fits”; it was a blood pressure medicine called Adalat.
She has gone to control every week for half a year, and got totally off medication around Christmas 2001.
So far it looks like she will make it. She has never had GvHD or any major infection.