Journal

Below you will find the entries that I sent to the JMML support group. Together they form a short journal. Latest news you will find here.

 Tuesday, October 26, 2004

Hi there,

Let's try to give a short update on Rosa..

We just spoke to our doctor of Leiden. He told us that the blood values are fine (Hb 7.4, trombocytes 110, WBC 4.1, monocytes a bit higher than last time: 19 percent(but not manually checked so it could be lower than that).

The donor percentage went a little down, from 52/69 to 51/50 percent. Since there is no rapid progress we still wait untill leukemia really returns.

Further I promised you to give information about the boy that was living with a donor percentage of 0 percent, no treatment and still no leukemia (living near Detroit). Doctor Hadi Sawaf wrote our doctor following:

"Sorry for the delay, I lost the F/U on that patient and was hoping to update my information. What I can tell you that the pt presented approximately 10 yrs ago with failure to thrive, massive hepatosplenomegally, leukocytosis, monocytosis, histologic evidence of heptic extramedullary myelopoiesis and in vitro evidence of sponteanous growth of the patient’s CFU-GM culture. Patent was treated with retnoic acid for 1 year and then continued indefinitely due to the absence of suitable donor. As far as I know the patient is still alive and well, somewhere in Pennsylvania . Two other patients I had with the same dx were transplanted, one relapsed and passed away, the other is in remission 2 years post transplant. "

So I guess there the quest ends, because there is no similar case like written above...

I want to warn you also for very weird people. A mother wrote us emails pretending she had a doughter with JMML and had two BMTs. Due to a warning on internet I was warned very quickly and wrote her a test letter with very specific questions. The answers told us that she was indeed a fake. It turned out to be a 22-year old student having fun in getting attention of people that are in tough situations.

Well, that is the news so far... Rosa had a terrific 3rd birthday. We enjoyed celebrating it. She is doing fine. She is healing faster from a cold than me, that says something!
Nelleke

   Friday, August 6, 2004

Hi All!
We had very good results for the bloodcounts: Hb went up from 6.2 to 7.5, Trombo's from 100 to 134 and WBC stayed 4.3 with 11 percent monocytes. The doctor was very surpriced to see the bloodcounts recover. She was really puzzeled how this can happen. So a little miracle for us (allthough it is very small, it could be a beginning :-). VNTR test will be done in a month.
We decided with the doctors to wait with a BMT untill leukemia really returns..

The doctor had no news yet from the boy from Detroit. (He is living for 3 years now without leukemia and a chimera of 0 percent.) She is speaking to his oncologists in a week at a conference and I know her well enough that she keeps her promise. If I have news, I'll report immediately!

Love, Nelleke

  Friday, August 6, 2004

Bad news, the VNTR showed a decline of the chimera. From 74/65 to 72/50. The lowest number are the monocytes, the line of blood where Rosa's cancer is in. We are very sad because this means probably we are going for the second transplant somewere the end of September/ beginning October, or even sooner if there is a place available at the transplant department of the hospital.
It is not fair that our beautifull, health looking girl has to do in a second time.
Next appointments are:
- A bonemarrow tap next week or that week after
- 23 of august, in take meeting at Leiden hospital.

Thanks for checking in,
Nelleke

 Thursday, July 22, 2004

Hi! Bloodcounts were fine, still no sign of leukemia: Hb 6.6, WBC 6.6 (8 percent monocytes) and trb 103. Hb is a little low due to the chemo (purinethol 30 mg) that she gets every day. Blood was sent to Leiden for the VNTR test. Next appointment we will know the donor percentage, but hopefully sooner than that. A month is too long to wait! 
We are still having holiday and celebrating the summer at home. Last year we spent all fabulous summer at hospital, so reckon we enjoy!
Love,
Nelleke

 Monday, July 12, 2004

Hi there!
We had a lovely holiday at the beach for one week. Still two weeks holiday to go. We are trying to get some rest and do some things that had to be done a long time ago... After the appointment of July 21 we might go to our little boot and stay there for a few days. 

We are very curious for the VNTR test. But we will have to wait until August... Sometimes you want to let the time fly, sometimes (if a BMT is ahead) you would like to stop the time....
Thanks for checking,
Nelleke

   Tuesday, June 29, 2004

Good news from a congress in Leiden: a patient from Belgium, now adult, got JMML at 9 years old. Had the same progress with this disease as Rosa. Chimera was down to 20 percent and became 100 percent with use of Purinethol. So that gives hope for us. Patient is now grown-up and in good health!
Rosa's dose is up to 30 mg Purinethol (MP6) a day since the bloodcounts from her liver are ok.
Nelleke

 Monday, June 21, 2004

Hi!
Last Monday we went for a regular check-up. Blood counts were OK, Hb 7.1, WBC 3.6 and trombo 98. A bit lower due to the double dosis MP6, 20 mg a day. If liver functions are ok the dose will be 30 mg a day, that would be a normal dose for her age and weight. At the end of Juli donor percentage is checked again. We are very curious for that number!
Nelleke