The Week Leading to Bone Marrow Transplant

Starting from 6th July.

Last week was all about the eye problems and the hearing, this week is all about bone marrow. Transplant talk, blood tests and assessments.

On Friday 6th July 2007, Harrison had the third lot of IVIG. I noticed as did all the doctors that his nystagmus settled after this lot, so maybe that is the key - get his immunoglobulins up and the nystagmus may improve? We can only live in hope.

Harrison had a pretty uneventful weekend after this - but because he was feeling so much better I gave him some tummy time. He did very well! I have included a little bit of footage from the video on my mobile phone on the home page of the blog.

Then Monday 9th July came around, Ella's confirmatory tissue typing came back confirming the 6 on 6 HLA match.

Mum brought the kids down on the 10th for a visit, Ella saw the independent pediatrician. He reviewed her health, and her vitals, making sure that he was confident she was suited to being a BM donor. He was very happy with her generally and as her advocate for the procedure, signed off that she was well suited.

More forms to then sign, forms about the transplant, for testing , for post transplant testing, for addition to a study that was being done here for no pre treatment of BMT and for a genetics study by Dr Hershfield in the USA on ADA deficiency.

The 10th was also a funny day - we were driving on one of my rare visits out of the hospital, down to Parramatta Westfield (a 5 min drive) when Sterling said Parramatta Eels. It was so cute, and again there is a video of this on the front page.

Next was the pre operative day Wednesday 11th July 2007.

Due to the fact that Harrison has SCID and Ella is such a great match for Harrison, the doctors did not conduct any pre-treatment on Harrison.

Generally, patients are first given drugs like busulphan, to "kill" off any bone marrow they have so that the donor bone marrow when transplanted doesn't attack the cells of the recipient. If that was to happen it is called GvHD - Graft versus Host Disease, and is very serious. Drugs like cyclosporin are then given post transplant to help stop this. Unfortunately these same drugs can make kids quite sick. We were lucky enough not to have to have this done. Harrison therefore pre transplant is as well as he can be.

With one exception, the doctors needed a line into a strong vein to perform the transplant. One so they knew the cells wouldn't leak out into his body and two so that they can take bloods easily post transplant to see how things are progressing.

Harrison has general anaesthetic and the central line is put in. They also perform a lumbar punch to be sure that he has not got any viruses in his spinal fluid which may be upset by the transplant.

All looks good.
The line they put in is called a central line and has two lumen's protruding from them. This line will be in for at least 6 months post transplant.

It is through this that he will be connected to receive the bone marrow transplant. Basically it will look like a blood transfusion.

Ella is scheduled to come down and stay overnight on 11th and will stay with Scott in our long stay accommodation, she will be nil by mouth from midnight until her op is over.

I have to say I am very nervous about this and I don't know how Scott went but I hardly slept a wink - from a mixture of excitement and worry.