Ryan has been seeing his oncologist at MaryBridge in
1) He
was transplanted under one of their clinical trials, led by Dr. Laurie
Burroughs, using Treosulfan (a chemotherapy drug not yet approved by the FDA).
2) He
has some issues with GVHD that they are monitoring.
3) We
are local to the Seattle
area so, logistically, it is somewhat convenient.
GVHD:
Shortly
after receiving his donor cells, Ryan developed acute skin GVHD. The doctors also suspected some mild gut GVHD
at that time, but his symptoms were never severe enough to warrant an
intestinal biopsy to confirm. He was
started on high dose steroids and also received PUVA, a UV light treatment, for
his skin. He was tapered off the
steroids fairly quickly because he had a bad psychological reaction, plus the
PUVA therapy worked well to put the skin GVHD into remission.
Although Ryan
currently remains free from signs of skin GVHD, symptoms of possible gut GVHD
have flared up. His appetite is almost
non-existent. Most of the time, he just
doesn’t feel hungry, but other times, he feels nauseous. Food sometimes looks and sounds good to him,
but he will take a few bites and be done.
The smell of food is also bothering him.
He has been averaging about a 1-2 pound per week weight loss.
In addition
to the appetite symptoms, the eosinophil count in Ryan’s blood has
skyrocketed. A high eosinophil count
generally indicates inflammation and can be a sign of GVHD. A normal eosinophil count for someone Ryan’s
age should be less than 300. Last week, his was over 6,000!
Unfortunately,
it is looking like an intestinal biopsy and another round of high dose steroids
are probably in his near future. This is
bad for several reasons:
1) On
steroids, Ryan goes away and is replaced by a boy who is very unhappy,
unreasonable, and extremely challenging to deal with. I have a video clip from when he was first
put on them in the hospital and it is not pretty! It’s like a scene from The Exorcist.
2) Among
other things, high dose steroids cause bone loss, high cholesterol, high blood
pressure, and greatly increase the risk of infection.
3) Steroids
make him itchy and could spark a flare-up with his skin again.
School:
We are over
a month into the school year and I think we have finally come to an agreement
on a plan with the school district. They
originally offered a limit of 2 hours of tutoring a week under a home hospital
plan. I pursued a 504 plan instead, and
we are now up to 6 hours a week of tutoring, materials to be provided by the
classroom teacher weekly for us to work with, and the option to Skype with the
classroom and possibly Skype with an older 5th grade “reading
buddy”. However, if Ryan is put back on
the steroids, I am not sure how this is all going to work out…
Germaphobia:
I have
always been a bit of a germaphobe, but having a child with no immune system,
along with the media’s coverage of Ebola and Enterovirus D68 have really kicked
my OCD into overdrive!
During
Ryan’s last appointment at SCCA, I jokingly told them I felt really paranoid
about germs and that I thought maybe I was starting to go overboard. They looked at me very seriously, and said
“Oh, no, we made you that way. You HAVE
to be that careful.” I realized they
were right. A common cold is an
annoyance to most people, but to a transplant patient it can be a potentially
fatal event, or on a milder scale, can put a transplant patient in the hospital
on a ventilator.
Here are
some things that the average person probably doesn’t think about, that my
family has to deal with every day:
-
Avoiding people as much as possible; you never
know who might be sick, even if they don’t show symptoms yet! We are basically still living in isolation as
much as possible. Except for appointments, Ryan only stays at home or goes to
grandma’s house while I am at work. For appointments, Ryan wears a mask except
when in the exam room with the door closed.
He is even getting paranoid and told the social worker last week to get
away from him (she had a cold and was wearing a mask).
-
Ryan’s sister has to stay at her mom’s house if
she has any cold symptoms or has been around anyone that has cold symptoms
(this is a struggle because she has asthma and allergies so it is hard to tell
when she has a “real” cold).
-
Brad and I limit our own exposure to the public
so that we don’t get sick and bring it home to Ryan. This is another challenge because Brad is self-employed
working with the public, and I work in a large building with about 500 other
people, several of whom travel internationally on a regular basis and are
probably exposed to all sorts of things on airline flights.
-
We have to keep Ryan away from sources of
bacteria, fungus and mold: No house plants, all fruits and veggies have to be
scrubbed thoroughly (including banana peels if he is going to touch them), Ryan
has to wash his hands anytime he pets the cats, the cats cannot sleep with him
(we have to keep the door to his room closed 24-hours a day), and the list goes
on…
Among other
things, we have to wash our hands and/or gel after touching:
Door handles
Elevator
buttons
Other
people’s desks, conference tables, pens, keyboards, etc.
Point of
sale devices (pin pads / styluses)
Grocery
carts
Items off
store shelves
Gas pumps
Etc…
I can hear a
single cough across an entire crowded store and then that person goes on my
radar and I avoid going down any isle where they may be.
Same thing
at work… If I hear you coughing or know
you are sick, I will avoid you. If I can
call into meetings from my desk, I will.
If I have to attend in person, you will likely see me sitting in the
back of the room or at least keeping some distance from others. Also, don’t be offended if I decide to put a
surgical mask on. These are just some
temporary precautions I have to take.
I avoid
getting in crowded elevators. If someone
waiting for the elevator coughs or sneezes, I will not go into the elevator
with them. I will take the stairs or
wait for the next elevator.
If I am in
the stairwell and I hear someone coming toward me cough or sneeze, I will turn
around and go back the other way.
I have even
been borderline rude on occasion and asked people directly if they are sick
and/or told people to please keep their distance.
I often hold
my breath when I walk past people, especially if I know they are sick.
However, we
are trying to figure out a way for Ryan to be a kid for a few hours and do some
trick or treating on Halloween. I think
the plan is for him to wear a mask under his mummy costume, we will go early to
avoid crowds of kids, and we will wipe down the outside of all of his candy
wrappers with rubbing alcohol before he can have any of them.
Upcoming TV
Commercial:
Ryan and his
sister will be in a national TV commercial scheduled to run November 22 through
January. I am hoping to be able to post
more details soon. It involves a major auto-maker, a national charity, and ties
to Ryan’s transplant. Another Hint:
“Love”
Through this
opportunity, both kids received some fun mail - invitations to join the Screen
Actors Guild (SAG). We will be saving
the letters of invitation for their scrapbooks, but we don’t plan to spend the
$3,000 per kid to join since we don’t anticipate anymore “acting” gigs in their
future.
Upcoming
Birthday
Ryan will
turn 6 tomorrow! He doesn’t know it yet,
but we made last minute arrangements for one of his best friends from school to
come over and hang out with him. He is
going to be so surprised. He hasn’t seen
any of his friends in almost 8 months!
Even with
the GVHD struggles and the year-long required changes in lifestyle to isolate
Ryan from infection, overall, he is doing very well. There are many medical professionals that we are
just now re-connecting with for the first time post-transplant, and all have
commented on how great Ryan looks. I
agree. I think most people meeting him
for the first time wouldn’t have any idea what he has been through in the last
year and a half.
Once all of
the restrictions are lifted (hopefully by late spring 2015), we plan to make up
for lost time. Ryan is already making a
mental list of all of the things he wants to do and the places he wants to go. Yesterday out of the blue he said “The next
time we go to Leavenworth ,
I can stay in the loft because now I have platelets.” (He was referring to a
place we previously stayed overnight. It
had a ladder to a loft that I wouldn’t let him sleep in because I was worried
he could fall and hemorrhage.)
Note: The
pictures from this post were taken a few weeks ago. Ryan decided it was time to inherit his older
sister’s Razor 360 scooter. It looks
like fun – I think they need to make one for adults!
Current Counts:
WBC: 7.62
(normal)
RBC: 4.14
(normal)
Hgb: 13.2
(normal)
Hct: 37.1
(normal)
Platelets:
248,000 (almost normal! – The GVHD is likely keeping this count a little lower
than it is capable of being)
ANC: 1290 (slightly low this week, but it’s normal
for this count to fluctuate quite a bit)
Abs eos:
3010 (was 6760 last week – both numbers are very high and a potential
indication of GVHD activity)
