Medical treatment
Below you find a summary of the medical treatment of Rosa. Rosa has a
rare form of leukemia: JMML (Juvenile Myelo Monocytic Leukemia). It was
discovered when she was one and a half. She had a BoneMarrow Transplant
before her second birthday. Soon after transplant her chimera declined.
Now it is around 40/35 (see figure
on dutch page),
but leukemia has not returned yet. We decided to wait untill leukemia
returns before we start a second transplant. Rosa is doing now extremely
well (take al look at the pictures!).
SORRY, NOT YET TRANSLATED EVERYTING, QUESTIONS?
MAIL!
From discovery to transplant
| date |
weeks
before BMT |
|
| 27 march 2003 |
Rosa
almost one and a half
-17,4
|
After a bath I
discovered a large bump in Rosa's belly. The doctor did not
trust it and sent us to the hospital of Delft. The bump turned
out to be an enlarged speen (3 times as big as usual). The same
evening we were told that it was a sort of leukemia... |
| 28 march 2003 |
|
We were brougth to
the children hospital of Rotterdam the next morning. A diagnoses
was made very quick: it was a rare form of leukemia: JMML |
| 31 march 2003 |
|
Medication: bactrimel, fungizone,
SDD. |
| 15 april 2003 |
-15 |
lymfe-oedeem in
right leg: start 20 mg MP-6
(purinethol) |
| 16 may 2003 |
-10,4
|
Bloodvalues are
going down too much, MP-6 was reduced to 10 mg. |
| 24 may 2003 |
|
Hendrik was born, a
perfect sibling 100 percent match! |
| 3 july 2003 |
-3,7 |
first day of
hospital, start bonemarrow transplant. |
Bonemarrow transplant
| date |
day |
|
examinations |
medication |
remarks |
|
|
|
|
|
|
| 3-jul-03 |
-26 |
thursday |
opname,
kaakchirurg |
SDD,
bactrimel, fungizone, stop 6MP |
|
| 4-jul-03 |
-25 |
friday |
bloedonderzoek,
röntgen torso & hand, anaestesist |
|
|
| 5-jul-03 |
-24 |
saturday |
RMD |
|
|
| 6-jul-03 |
-23 |
sunday |
RMD |
|
|
| 7-jul-03 |
-22 |
monday |
lange
lijn operatie |
|
|
| 8-jul-03 |
-21 |
tuesday |
dietiste,
oogonderzoek |
|
|
| 9-jul-03 |
-20 |
wednesday |
echo,
ECG |
|
|
| 10-jul-03 |
-19 |
thursday |
maatschappenlijk
werk, lijn eruit!! |
|
|
| 11-jul-03 |
-18 |
friday |
|
|
|
| 12-jul-03 |
-17 |
saturday |
|
medicatie
al 's nachts |
speelgoed
gewassen, albert op ouderkamer |
| 13-jul-03 |
-16 |
sunday |
|
|
|
| 14-jul-03 |
-15 |
monday |
lange
lijn operatie |
|
albert
RMD |
| 15-jul-03 |
-14 |
tuesday |
endocrinoloog
i.p.v. Monday |
|
kleren
steriel |
| 16-jul-03 |
-13 |
wednesday |
naar
de FLOW, hechtingen eruit van eerste keer lijn |
TDD
(al eerder begonnen?) |
|
| 17-jul-03 |
-12 |
thursday |
|
|
|
| 18-jul-03 |
-11 |
friday |
|
erytrocyten-transfusie
(HB<5.5) |
|
| 19-jul-03 |
-10 |
saturday |
|
|
|
| 20-jul-03 |
-9 |
sunday |
|
busulfex,
anti-misselijkheid |
|
| 21-jul-03 |
-8 |
monday |
|
busulfex |
|
| 22-jul-03 |
-7 |
tuesday |
|
busulfex |
om
elke 3 uur verschoon, ook 's nachts |
| 23-jul-03 |
-6 |
wednesday |
|
busulfex |
|
| 24-jul-03 |
-5 |
thursday |
|
|
|
| 25-jul-03 |
-4 |
friday |
|
cyclofosfamide |
Rosa
slow-motion door anti-misselijkheid |
| 26-jul-03 |
-3 |
saturday |
|
cyclofosfamide,
vitaminepil |
|
| 27-jul-03 |
-2 |
sunday |
|
sondevoeding |
|
| 28-jul-03 |
-1 |
monday |
|
melphalan |
|
| 29-jul-03 |
0 |
tuesday |
|
Stamceltransplantatie!! |
|
| 30-jul-03 |
1 |
wednesday |
|
|
|
| 31-jul-03 |
2 |
thursday |
|
|
|
| 1-aug-03 |
3 |
friday |
|
|
|
| 2-aug-03 |
4 |
saturday |
|
|
haren
vallen uit |
| 3-aug-03 |
5 |
sunday |
|
|
Rosa
hangerig, temp 38.2 |
| 4-aug-03 |
6 |
monday |
röntgen
ivm lange lijn |
|
sondelijn
uitgespuugd |
| 5-aug-03 |
7 |
tuesday |
|
nieuwe
maagsonde |
|
| 6-aug-03 |
8 |
wednesday |
|
intraveneuze
voeding |
|
| 7-aug-03 |
9 |
thursday |
|
morfine |
Rosa
weer in bad |
| 8-aug-03 |
10 |
friday |
|
cyclosporine
(al eerder?) |
|
| 9-aug-03 |
11 |
saturday |
|
|
|
| 10-aug-03 |
12 |
sunday |
|
|
|
| 11-aug-03 |
13 |
monday |
|
|
Leuko's
0.2! Een TAKE |
| 12-aug-03 |
14 |
tuesday |
|
plaspil |
|
| 13-aug-03 |
15 |
wednesday |
|
|
|
| 14-aug-03 |
16 |
thursday |
|
intraveneuze
voeding gestopt |
|
| 15-aug-03 |
17 |
friday |
|
|
|
| 16-aug-03 |
18 |
saturday |
|
|
|
| 17-aug-03 |
19 |
sunday |
|
|
temp
weer hoog |
| 18-aug-03 |
20 |
monday |
|
|
|
| 19-aug-03 |
21 |
tuesday |
|
|
|
| 20-aug-03 |
22 |
wednesday |
|
morfine
gestopt |
|
| 21-aug-03 |
23 |
thursday |
|
|
|
| 22-aug-03 |
24 |
friday |
|
sondevoeding
's nachts gestopt |
|
| 23-aug-03 |
25 |
saturday |
|
paracetamol
gestopt |
|
| 24-aug-03 |
26 |
sunday |
|
|
|
| 25-aug-03 |
27 |
monday |
|
|
|
| 26-aug-03 |
28 |
tuesday |
|
biogarde,
stop TDD |
|
| 27-aug-03 |
29 |
wednesday |
|
biogarde,
J-flora |
|
| 28-aug-03 |
30 |
thursday |
|
biogarde,
J-flora |
|
| 29-aug-03 |
31 |
friday |
|
biogarde,
J-flora |
koorts
39.8 |
| 30-aug-03 |
32 |
saturday |
|
biogarde,
J-flora, sonde in slaap eruit |
|
| 31-aug-03 |
33 |
sunday |
|
biogarde,
J-flora |
|
| 1-sep-03 |
34 |
monday |
|
|
tent
OPEN! |
| 2-sep-03 |
35 |
tuesday |
lange
lijn eruit |
medicatie
stop, alleen nog antibiotico ivm verwijderen lange lijn |
verhuisd
naar boxen |
| 3-sep-03 |
36 |
wednesday |
|
|
|
| 4-sep-03 |
37 |
thursday |
|
|
naar
HUIS! |
Na BMT
| datum |
weken
na BMT |
|
| 14-10-03 |
10,7 |
eerste DLI, chimerisme daalde. Poging om het weer
op 100 procent te krijgen. |
| 29-10-03 |
12,9 |
tweede DLI |
| 24-12-03 |
20,7 |
start 6MP 10 mg, vertragen doorbreken leukemie en
poging tot 100 procent chimerisme. |
| 29-01-04 |
25,7 |
immuumglobalines |
| 5-3-04 |
30,9 |
immuumglobalines |
| 9-6-04 |
44,3
|
6MP 20 mg |
| 26-6-04 |
46,7
|
6MP 30 mg |
| 31-12-04 |
73.1
|
stop
6MP |
| 17-01-05 |
75.4
|
start
Accutane 60 mg/day |
|
