January
5th: Jaimz starts at Kindergarten
and though a bit shy at first, he soon loves going there.
The problem is that he's still deaf a lot of days.
January 20th: ENT appointment.
He says there is a bit of fluid behind Jaimz's ear drums,
but he can't tell yet if this could do any harm, first he
wants to know the results of the hearing test Jaimz will
have to take. Throat and nose look normal he says.
January 30th: Jaimz is ill.
He vomits 3x today and has extreme diarrhea (10-15 times
a day). He has a bit of a fever and is very tired and a
bit listless.
January 31st: Still ill. He's
also developed a weird looking blister on his belly. Could
this be chicken pox?
February 1st: Still ill and
10-15 times a day diarrhea. He's lost some weight. His blister
is open and looks worse, so we've covered it with a bandage
to keep it clean. His ears ache tonight.
February 2nd: appointment with
Dr. Hoekstra. Jaimz indeed has lost some weight and has
only grown a little (93 cm - 11,7 kilo). His blister is
an ugly looking wound now (circa 1x1 inch). Dr. Hoekstra
says it's not chicken pox and prescribes a povidon-jodine
cream. No blood tests today because Jaimz is ill, the values
wouldn't be right anyway.
February 3rd & 4th: no
more earache but still diarrhea. His wound is now about
2x2 inches and looks even worse.
February 5th: Jaimz for the
first time in days has a good night sleep. The GP, after
looking at Jaimz's wound (now 2x2,5 inches), at once makes
an appointment for us with the dermatologist who we can
see at once. She says 'oh it's a typical case of Staphylococcus'
and prescribes Fucidin (antibiotics cream) and I have to
wash Jaimz's cloths, sheets, etc. real hot. This should
do the trick she says.
Dr. Hoekstra phones this afternoon and I tell him about
our morning. We agree to wait another week for blood tests.
This evening Jaimz's wound looks so much better and his
diarrhea is also less.
February 7th: the wound is
healing so well! Normal stools and Jaimz is finally smiling
again. We'd missed that so much!
February 10th: Jaimz is back
in school again. His belly looks perfect, he's feeling well
and is (after some initial problems) finally on Creon.
February 16th: Hearing test.
Jaimz doesn't really cooperate.
February 17th: What started
with 1 small dry spot under Jaimz's nose (we thought due
to his cold) has developed into a big dry spot there, and
2 red, dry cheeks and some spots on his chin. It doesn't
look like Staphylococcus to us, so we don't use the Fucidin
cream here.
February 18th: Blood tests.
Jaimz's face is covered with, what looks to us like, wet
eczema (reminds us of early 2000). Could he be allergic
to his Creon? We hope not and hope this won't effect the
blood test results.
February 19th: Dr. Hoekstra
e-mails that he doesn't think it's an allergic reaction
to the Creon. The dermatologist we see that afternoon says
it's Impetigo (crusty rash on chin and around mouth) caused
by the Staphylococcus bacteria and tells me to continue
using the Fucidin cream and all 3 of us (to avoid cross
infection) also will have to use a nose cream. We're relieved
it's not caused by the Creon, but this isn't fun either,
especially for Jaimz himself. He sometimes cries when he
sees his face in the mirror and it's hard for him not to
touch his face. The ENT phones and tells us Jaimz's hearing
isn't perfect, but not too bad either. We can either choose
to wait and see how things will develop or Jaimz can have
tubes installed. He advises us to wait a bit and we agree.
February 20th-21st: Jaimz's
face is starting to heal, he has a new spot on his foot
and a few on his hands.
February 26th: Jaimz is so
happy that his face is better again. Things are finally
starting to look good again, so I'm totally unprepared for
the bad news I receive from Dr. Hoekstra: Hb is down (from
7,6 in October) to 4,7. Ferritine level is very high. The
production of red bloodcells and the RBC & WBC are good
though. He advises an emergency biopsy and the HEM phones
a bit later to tell she'd also like a spinal puncture (when
he's under) to obtain some spinal marrow, because if his
bone marrow wouldn't be good, she'd need that later and
it's easier on Jaimz to do that when he's under for his
BMB anyway.
March 3rd: BMB day. The inserting
of the needle for Jaimz's infusion is a bit of a disaster,
after 5 failed tries (Jaimz is crying his eyes out) by 3
different people, an experienced nurse finally suggests
to insert this when Jaimz is under. Great idea! We'll surely
remember this for next time, because we don't want Jaimz
to get to afraid of needles because he's having his blood
tested frequently.
A nurse also shows us something new: a scented marker to
'color' the narcosis mask so Jaimz will smell the scent
of his choice (Bubblegum) and this will mask the weird narcosis
scent. At 10.30 we arrive at the OR where I ask the HEM
if she will also check Jaimz's cholesterol level, because
I've read that a combination of a high ferritine level with
a high cholesterol level may indicate heart problems. At
the OR Jaimz gets scared and I end up coloring his mask
and holding a struggling boy while the anesthetist holds
the mask over Jaimz's mouth. Jaimz's fights, farts and starts
snoring. and I have to leave the OR room and my poor little
guy.
About 45 minutes later the HEM tells me everything went
well, they collected some spinal marrow through the spinal
tab and Jaimz has 2 little wounds at his pelvis, where some
bone marrow and a piece of bone were removed. She'll try
to phone me tomorrow or the day after with the results.
A nurse comes to tell me I can accompany her to the recovery
room, where Jaimz is. Jaimz wakes up crying and completely
disorientated and very unhappy. It's not possible to make
him relax and he even gets a little hysterical, so I ask
if we can return to the pediatric department where Jaimz's
dad is waiting a.s.a.p.! There Jaimz finally is able to
relax and soon he drinks some water and is nibbling on a
cookie. A few minutes later he's already walking around
and all seems well, until he suddenly screams from pain
in his back. The spinal wound is not leaking and Jaimz doesn't
have a headache, so the nurse expects the pain was caused
by a sudden move and is 'only' wound pain.
Jaimz is in pain so she gives him a painkiller and the staff
keeps an eye on him for a few more hours. Around 3 PM we
can finally go home and Jaimz falls asleep in the car. Home
he eats well (he's really hungry!) and sleeps well during
the night.
March 4th: Jaimz still (though
he's talking and walking again) complains about pain in
his back. In the afternoon this gets worse and in the evening
he's screaming from the pain and vomits twice. I call the
hospital, thinking it might be meningitis and the Ped there
agrees, but says that the fact that he doesn't have a fever
is 'hopeful'. She says it's common for older kids to have
severe muscle cramps after a spinal tap (great that no one
told us this before!) but she's never heard of it happening
by a kid Jaimz's age. If Jaimz should develop a fever or
start feeling more ill we have to call back, but for now
she thinks it's best to wait and see what'll happen. Jaimz
has fallen asleep during this phone call and has a fever
free night.
March 5th: Jaimz is feeling
a little better though he still complains about a neck ache.
The HEM calls and says small dysplastic characteristics
have been found in Jaimz's marrow. If he would have Leukemia
these would be large, but to be sure his marrow is send
to a team of Dutch marrow and cancer specialists (SKION)
that will meet in April (MDS?). The HEM also started a chromosome
examination and will inform us on these results a.s.a.p.
Ferritine level is down again so this could mean the raise
was caused by Jaimz's Staph infection, his cholesterol level
is low (2.7) so that's good, his Hb is a little higher (5.2)
I tell her I think that it may have been an inflammation
anemia, she doesn't agree, but then she never saw Jaimz's
huge belly wound. (After a case of inflammation anemia the
Hb level should be back to normal in a few weeks time, so
we'll wait and see). Spinal marrow results were good, no
abnormalities.
March 11th: Dr. Hoekstra calls
about Jaimz's Hb level and suggests monthly tests.
March 17th: After having been
healthy for a few days (and back at school) today it's wrong
again: Jaimz complains about ear aches, drops and a paracetamol
work but he's staying home from school again. Poor kid.
March 25th: Dentist. Today
we really want the dentist to make X-rays of Jaimz's teeth.
A few earlier attempts failed, but today Jaimz cooperates.
The X-rays show that his teeth are fine, no abnormalities!
Early April: Jaimz's ears seem
fine, but when he's having a cold (as he is now) he's also
a little deaf again.
April 5th: Blood tests: luckily
Jaimz is not too afraid after the bad infusion experiences
of March 3rd.
April 16th: A cold, a fever
and an ear infection.
April 19th: Dr. Hoekstra calls:
HB is up to 6.7 and ferritine level is still low. Leucocyte
and neutrophyls counts are good. The results of the chromosome
examination are in: a normal male chromosome! Dr. Hoekstra
agrees with my theory of inflammation anemia.
April 21st: Jaimz's cold is
still not better, he continues coughing a lot (especially
at night and then he even vomits because of his coughing).
April 26th: No more fevers,
but still coughing and vomiting, could this be Pertussis
(even though Jaimz did have his vaccinations)? We visit
our GP and he agrees. Jaimz's lungs sound clear and he prescribes
Promethazine syrup which is supposed to suppress the coughing
(and in this way also the vomiting) and make Jaimz sleep
better at night.
April 30th: Jaimz is starting
to feel a little better, though he's still very easily tired.
He still coughs at night, but a little less than he used
to do.
May 3rd: Appointment with Dr.
Hoekstra. Jaimz has grown a little (93,5 cm - 12,1 kilo).
Jaimz's lungs till sound 'clean'. He also looks at Jaimz's
ears: 1 ear is dry, 1 contains some fluid. He thinks it's
best not to choose too soon for tubes, especially since
it's getting warmer and in the summer most ear problems
are gone anyway.
As a result of an enormous coughing fit Jaimz tonight has
a bloody nose.
May 12th: Dr. Hoekstra phones
with the results from the SKION: compared with Jaimz's bone
marrow from October 2002, production of red and white bloodcells
and platelets is less. Their advise is monthly blood tests
and a new BMB in June. Dr. Hoekstra thinks it's best to
follow their advise, just to be sure and at least this way
they (the SKION specialists) will have a good bone marrow
sample (that from June) in their archives.
May 17th: Another trip to the
hospital for blood tests.
May 21st: Again a bad ear ache
tonight, luckily the eardrops work soon.
Since a few days Jaimz complains about some pain in his
knee and he walks with a stiff leg.
May 24th: Dr. Hoekstra phones
with the results of the latest blood tests: about the same
as last time, Hb is now 6,1, the vitamin levels aren't in
yet. About Jaimz's knee ache he advises us to watch it for
another week and to call him if it doesn't get any better.
May 25th: The HEM phones us
to make an appointment for Jaimz's next BMB: June 23rd.
When I tell her I'd really like the infusion to be placed
after Jaimz is under, she says that's no problem, I will
have to remind the staff though. And no, no spinal tap is
needed this time!
End of May: Jaimz is walking
(& jumping around) well again, no more pain. His ears
also seem well again.
June 7th: Dr. Hoekstra calls to inform us that the vitamin
levels are ok, so this means Jaimz's pancreas still needs
the Creon and we will have to continue giving him the additional
vitamins A, D, E & K.
Medio June: Jaimz's Pertussis
seems to be under control, so we stop giving him his medicine
and Jaimz is back in school again.
June 23rd: BMB day. Jaimz does
NOT want to go! We try to explain that this time it won't
hurt (very much) and he won't have any neck pains, but he
still does NOT like it one little bit. Poor kid. At the
hospital he is very brave, starts playing immediately and
loves his pink (!) hospital pajamas. We're scheduled for
10 AM. He struggles a bit when the anesthetist puts on the
narcosis mask, but is under quickly. After only 15 minutes
the HEM comes to tell my that all went well and that I'm
allowed to go to the recovery room to see Jaimz. He's still
sleeping when I arrive there, so I carefully wake him and
comfort him. The medical atmosphere scares him, but his
dad and a nurse arrive soon and we can return to the pediatric
department soon, where Jaimz tells us he's very thirsty
and has a bad taste. Some orange squash and a biscuit remedy
this a little and soon he's out of bad and playing again.
At 1.30 PM he's well enough for us to go home again and
our brave little boy even tells us that this time it wasn't
really bad at all.
June 24th: No pain, but still
very tired.
June 25th: Back to school again
(for half a day).
June 26th: Jaimz is feeling
well enough for a full day of school and even performs in
a school play!
July 1st: The HEM phones us
to give the BMB results: bone marrow is about the same as
March 2004: small dysplastic characteristics. I expected
better results, but to be honest, if it stays this way we
of course have nothing to complain. She advises another
BMB next year. Hb is a bit lower again (5.8) and the iron
store in his body is low, so she'll discuss giving additional
iron with Dr. Hoekstra.
I'm currently (August 26th) working
on this, so more will follow soon!
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