Latest News

Latest news

Welcome! You will find the latest news here. For earlier entries look here.

Important dates:

- donderdag 13 mei, 10.00 uur appointment BMT centre Leiden

News

Thursday, April 14, 2005

Bloodcounts fine. We agreed with our doctot that we give Rosa 3 weeks Accutane, 1 week off.

Rosa was examined by three!!! eye-doctors last monday. She has a lot
of trouble with sunlight. It turnes out that her eye-nerves don't
work well and that the pupil is staying too wide. They had never seen
this before! I wonder why we get all the special treatments :-)

Anyway, it is nothing serious, only a bit inconvenient, but we were
able to get a pair of nice kid-proof-sunglasses.

It was very fun buying them because I went with our new carrier
tricyle. Rosa and Hendrik are sitting on al little bench and Annemijn
is at their feet in the maxi-cosi. Both Rosa and Hendrik wanted to
wear there sunglasses and it looked so cute! There were several
tourists (we have al lot of them in Delft!) that made a picture of
them... When I have a picture on our site I will let you know!

Nelleke

Sunday, March 27, 2005

A small update about Rosa; Rosa has mixed blood, donor/own blood. It is now declined to 29/25 percent, from 35/30 percent (see figure). We are giving Rosa isotretinoïne (Accutane) to let the donor percentage go up, but as you can see from the figures it did not work. Positive news is that her bloodvalues are fine and that there is still no sign of leukemia. We want to stop with the accutane because Rosa is tired because of that (skin problems are minor). The doctors are now in discussion. They tend to go through because of the possibility that a JMML cell could mature through the Accutane. But we are wondering when to stop? 2 years after BMT? 3 years after BMT? When are we safe? No one knows...

Anyway, we are not very busy with this. The care of now three little kids are keeping us busy... That is why I did not respond much lately. I keep up with the messages and react when I have time (or read such funny messages Niki!).

All the best! And happy Eastern!
Nelleke

Thursday, Febuary 3, 2005

Dear all,

A small update about Rosa. We started two weeks ago the Accutane and
since then she is doing fine but she is a little tired and has a very
dry skin around her mouth. Bloodvalues were fine again, HB 7.4, WBC
5.4 (last time 10 percent monocytes) and Trombocytes 132. Her belly
felt very smooth? and her liver has never been so small. So I guess
there is still no leukemia. One month to go and we are one and a half
year after BMT.
We have to give Rosa accutane for 3 months to see if her donor
percentage is going up (last time her donor percentage was 35
percent). Rosa was doing fine today. She did not even cry when she
got a prick in her vinger for blood. That was the first time ever!
After the visit we went for a visit to the zoo and had a long stay at
the elefants. There were 4 little elefants playing hide and seek and
running after each other. The children enjoyed it.

Love to you all,
Nelleke

Monday, January 24, 2005

January 10th our beautifull daughter Annemijn was born. She was born at home at 2.25 pm and weighs 3850 gr. We are very gratefull and full of joy!

She is doing fine, drinking well and sleeping at night, no complaints so far!

On January 17th we started with the Accutane, 60 mg/day. She now has a dry skin on her face and she is a bit tired. Untill now that is it. Let's hope that it will stay like this. Our doctor wants to give this to her for 4 to 6 weeks to see if donor percentage goes up.

Love, Nelleke

Friday, December 31, 2004

Hi there!
For us still some hours to go, heading for a new year.. I wish you
all a very good, healthy and joyfull 2005 full of miracles.

A small update about Rosa.
The fish test came back this week and showed that the donor percentage went down again from 50/51 (two months ago) to 40/35 percent. The doctors concluded that giving her 6MP was no longer usefull and decided that we don't continue that anymore.

But we are going to take the chance that her donor percentage may go up by using Accutane (in europe Vesanoid). Not because the leukemia has returned, but just to raise the donor percentage. If Rosa will relapse it feels better that we tried it because it seems to work better if there is no leukemia yet. We will start in a week and hope that she will have no side effects at all. After one month our doctor expects to see some result and after 3 months there should be a huge result or not. I hope we can tempt Rosa to swallow these things. Someone tips?

Rosa is doing fine now. Enjoying the holiday and longing for the new baby. The delivery date is january 7th so I hope it will come quick. I am tired of sitting at home and feeling like I fall in pieces when I walk...
Love to you all,
Nelleke