I haven’t updated
Ryan’s blog for awhile because I have been posting more frequent updates to his
Facebook Page (www.facebook.com/plateletsandpuppydogtails).
However, I know there are some people that are not on Facebook (or are
not aware of Ryan’s page), so I will try to update here more frequently. To catch up, I am copying the last several
Facebook posts below (most recent first):
January 29, 2014
SCCA Day 7 – Not
Aplastic Anemia???
The results of Ryan’s double bone marrow biopsy came back
right before our appointments at SCCA started today.
We were in the exam room waiting for the transplant team. I
was browsing Facebook and read that a little girl named Gabby lost her battle
with Aplastic Anemia today. Bone Marrow Failure diseases in young children are
very rare, so as far as numbers, there are not many families out there in the
world going through this. However, we have slowly been finding each other
through social media and we share in both victories and tragedies. I think we
all take it personally when one of our AA families is suffering. I was already
teary-eyed by the beautiful post written by Gabby’s mom about her final
moments, when Ryan’s doctor entered the room today and delivered another blow
to our family’s battle.
Ryan’s bone marrow cellularity is normal and Aplastic Anemia
is not his current primary diagnosis. What??? It sounds like great news, right?
It’s not. Because of his continued low blood counts and dependency on
transfusions, it just means there is something else going on. Even more scary –
they don’t know what that is!
One theory is that Ryan’s condition has progressed to a
Myelodysplastic syndrome (MDS). MDS is not a single disease but a group of
diseases that affect blood-cell formation. About 80 to 85 percent of people
with MDS have more cells in their marrow than healthy people do (hypercellular marrow).
But these cells do not live long enough to make it out of the marrow into the
bloodstream, or they are not in circulation long before they die. As a result,
people with MDS have low levels of one or more types of blood cells in their
bloodstream (cytopenia). MDS used to be called “Smoldering Leukemia” or
“Pre-Leukemia”, because in a third of patients, it progresses into a
fast-growing cancer of the bone marrow cells called acute myeloid leukemia
(AML). It is usually a disease of older adults, not children. When children are
diagnosed with it, it is normally due to something genetic.
None of the bone marrow biopsies done so far have shown any
signs of MDS, including the one done this week. In fact, the bone marrow does
not show signs of dysplasia (cells of abnormal shape or size), which is
normally one of the factors used to diagnose MDS. (Although, after I got home,
I remembered a few of Ryan’s past blood tests noting teardrop shaped red blood
cells and cells of differing sizes. I plan to mention this to the team
tomorrow.)
The team is consulting with Dr. Akiko Shimamura, one of the
leading bone marrow failure experts in the world, for potential answers. They
have decided to do some more in-depth testing for MDS. The tests should take
about 2 weeks, which means that Ryan’s transplant is delayed.
The transplant team believes that, regardless of the cause
of Ryan’s illness, it is still clear that he needs a bone marrow transplant. If
it is MDS, there is a high risk of it going on to a deadly form of leukemia
without a transplant. I asked “What if the additional tests come back negative
for MDS?” The team stated that it would be a really unsatisfying situation in
which they do not know exactly what is going on, but they would still think it
is somewhere on the MDS spectrum and they would treat it as MDS. This means
that Ryan would no longer be treated with the lower dose pre-conditioning
regimen that is used for Aplastic Anemia patients. He would be treated with
much stronger chemotherapy and may even require high-dose total body
irradiation instead of the low dose.
In the meantime, I also learned today that Ryan’s donor has
asked to have his marrow harvested earlier because he couldn’t be available on
the specific date they had originally requested. He wanted to move the
transplant up a few days, but now the team is going to have to ask him to delay
it by two weeks. I hope the donor will still be available.
I managed not to cry in front of Ryan. For the first time, I
almost did, but I managed to hold it together. He was watching a movie with
headphones on and had no idea about the conversation going on around him. I
have yet to cry at any of his appointments. I have teared up, but I always
remind myself that it probably would scare him to see me so worried. Halfway
through the drive home, I glanced in the rearview mirror and he was asleep. I
burst into tears.
January 28, 2014
SCCA Day 6 –
Radiology Oncologist, Platelets, & Dentist
Today was kind of a bummer. The day started at the
University of Washington Medical Center for a consultation with Radiation
Oncology. This is where Ryan will receive total body irradiation (TBI). The
doctor went over all of the possible side effects, which include, among other
things, an increased risk of developing tumors, mouth sores, skin sensitivity,
dehydration and infertility. I was already aware of the risk of infertility,
but I thought it was a 50/50 chance. Maybe that was wishful thinking on my
part. The doctor stated that we should assume there is a 100% chance of it. That
was hard to hear. Boys post-puberty have options to bank sperm. Adult patients
are able to understand the risks and make decisions about treatment. At age 5,
Ryan doesn't understand and he doesn't have a choice. It’s another thing this
illness is taking away from him, and it makes me angry and sad. Also, something
the doctor said about possible gland and cheek pain upset Ryan and he jumped
off the exam table and buried his face against my shoulder for the rest of the
appointment.
That appointment set the tone for the rest of the day. Ryan
needed platelets, so we returned to SCCA. Since his porta cath has been
accessed so much lately, the dressing (big plastic tape) they put over it has
created a large rash on his chest. It hasn’t bothered him until today, when
they used cleaner on his chest before accessing it. It must have burned! Ryan’s
face got bright red and he was clearly upset and on the verge of tears. Then he
told us it was hurting. The nurse was very kind and worked to reschedule some
lab work that was supposed to occur tomorrow, so that he doesn’t have to have
his port accessed again until Friday. Hopefully his skin will heal up quickly.
We then went to Seattle Children’s Hospital for a dental
consult, but Ryan was ready to be done for the day. He was not a happy guy and
initially refused to sit in the dental chair. He just went to the dentist a few
weeks ago, so all they did today was look at his X-rays, confirm there are no
cavities, and talk to us about mouth care during transplant.
The icing on the cake today was when we left the University of Washington Seattle .
I had to go all the way across the bridge, exit, turn around and go back over
the bridge heading toward Seattle .
This only cost us about 5-10 minutes total, but they recently made this a toll
bridge! That little mistake cost me $8.00!
January 27, 2014
SCCA Days 3 & 4 –
A Day at Home, Followed by PT, EKG & Echocardiogram
Since Ryan’s bone marrow biopsy was scheduled for last
Thursday, but was postponed until Monday because of the cough that his virus
caused, we stayed home and I caught up on reading the sea of paperwork I have
been handed the last few days. There is a 3-ring binder that is an inch thick
with nothing but authorizations that we need to read and sign. There are also a
couple of binders full of information regarding the transplant process,
infection control, medication, nutrition, graft verses host disease, etc.
Friday, Ryan met with a Physical Therapist to assess where
he is currently with strength, balance and coordination with fine motor skills.
The PT will follow him over the next year to make sure he doesn't lose any of
his current abilities.
He then went for an EKG and echocardiogram of his heart. He
was ready to be done for the day by the time the echocardiogram appointment
rolled around (and so was I)! The technician informed us that it would take 60
minutes, if Ryan didn't move, and a lot longer if he couldn't sit still. I was
worried that we would be there for three hours with me having to remind him
every 5 minutes to keep still. Instead, he was such a good sport. He asked me
to lay in the bed with him and we watched The Incredibles while the technician
did her thing. I only had to remind him to be still twice and it was during
times when the technician got the ultrasound wand to close to his porta cath,
which he did not like (I can’t blame him). Ryan had a ton of questions about
the ultrasound equipment, where the pictures go, and if the doctor could see
the pictures while she was taking them. She said she normally doesn’t get such
detailed questions about the equipment from someone his age and asked if anyone
at home is really into computers. Yep, that would be his Dad, who is in the IT
business.
January 21, 2014
SCCA Day 1 – Ryan’s
“Arrival”
Ryan had his “arrival” at Seattle Cancer Care Alliance
(SCCA) today. From now until the first week of February, when he gets admitted
to the hospital, he will have appointments with SCCA just about every day. He
will have various physical exams, continued transfusions, new medications to
start, an EKG, a Lung CT
scan, another bone marrow biopsy, a dental exam and regular blood draws/labs to
check for all sorts of things. We will also have conferences with the
transplant team, a consultation with a radiation oncologist, and meetings with
social workers, nutritionists, and physical therapists. There will also be
several classes to learn about things such as food safety for transplant
patients and preparing our home for Ryan’s return after transplant.
We will be bouncing between the SCCA facility, Seattle
Children’s Hospital, and the University of Washington Medical Center for all of
this. We received a printed schedule with each appointment, the time, and where
we need to be. I felt like it was the first day of high school or college and I
was racing between classes trying to figure out where I needed to be!
Holy cow – they took so much blood today for testing! There
were 14 full tubes, plus a huge syringe that they filled to the top with 20 mls
of blood! As his reward at the end, the tech let Ryan squirt him in the face
with two full saline syringes. Ryan loved that! We managed to squeeze 20
minutes in for lunch today. Tomorrow, Ryan will be getting a red blood
transfusion first thing in the morning and it will be an even longer day!
December 31, 2013
THANK YOU!
As 2013 winds down, I have been reflecting on Ryan’s
diagnosis this year of life-threatening bone marrow failure and the whirlwind
of the last 6 months. While this has probably been the most difficult year of
our lives, it certainly could have been much worse without all of the support
from friends, family, co-workers and, in some cases, complete strangers. We had
two months of meals prepared by co-workers, gifts for Ryan, donations that
helped us pay our 2013 health insurance deductible, phone calls, texts, cards,
and kind words said in passing. When Ryan was at his weakest after chemotherapy
and was getting tired walking, we even had a big kid stroller show up on our
doorstep. I have continued to work (mostly) full time and am very thankful for
the patience my coworkers have had with me as I come and go in between
appointments, call into meetings, work remotely, and try to juggle my work
responsibilities with my mom responsibilities. Thank you everyone for helping
make 2013 a little less horrible for us!
December 20, 2013
The Transplant is a
Go
Ryan's doctor is giving the green light today to proceed
with the bone marrow transplant. He definitely feels it is time. Although this
is a scary next step, I am glad to have an action plan and am filled with hope
for this potential cure. We don't yet have an exact date, but it could be as
early as mid-January. In the meantime, Ryan burned through all of his
transfused platelets last week and is getting another transfusion today.
December 13, 2013
Quick Update
Ryan may receive a bone marrow transplant as early as
January and we have some great news about a possible donor.
I am a little behind on updating Ryan’s blog, but wanted to
pass along that we have met with the doctors at Seattle Children’s Hospital,
and also had our transplant consultation at Seattle Cancer Care Alliance. All
of the doctors are recommending proceeding with transplant, subject to a couple
of genetic tests that are still outstanding and another bone marrow biopsy. His
last biopsy showed some increased cellularity in his bone marrow, but those
results just don’t match his continued regular dependence on blood and platelet
transfusions. The doctors seem to be of the opinion that the last biopsy likely
just hit one of the few “good” spots in his bone marrow (bone marrow can be
“patchy” in patients with Aplastic Anemia).
The most desirable unrelated donor for a transplant would
have the same 10 HLA tissue types as Ryan. This is called a 10/10 match.
Sometimes people have to go to transplant with a 9/10 match or even a “half
match” from a parent. However, the best chance of survival, with the lowest
rate of complications, generally comes from a 10/10 match.
I have heard of so many patients not having a single viable
match in the registry, or only having one or two matches, then having to wait
on pins and needles to find out if those individuals will truly donate. This
has been a major worry for me over the past few months and, even though Ryan
was HLA typed in September, I couldn't seem to get the specific results from
anyone. The doctors just kept saying that they didn't think they would have any
problem finding a donor. Finally, this week, we were sitting in the transplant
consultation and the doctor had a thick file on Ryan and turned to a particular
page. She asked “Has anyone told you how many potential donors Ryan has?” “No,
I have been trying to find that out…” She proceeded to tell us that three of
Ryan’s tissue types are very common in the general population and that he has
multiple potential donors. I looked at the page that she was turned to and I
saw a computer-generated list that had about 20 entries on it with a
hand-written note next to one of the lines that said “10/10”. I asked “Are all
of those 10/10 matches?” She confirmed they are all 10/10 matches! What I
didn't realize at the time was that the rest of the thick file behind that page
was a continuation of the list. In speaking with the donor search coordinator
the next day, I learned that Ryan has 3110 10/10 matches in the registry!!!!
Yes, that is four digits!!!!
While I am grateful beyond words that we have so many
options for donors, my heart aches for the families still searching for just
one. Please, please, please register at bethematch.org if you haven’t
already!!!
This week, the donor search coordinators started calling
some of the potential donors within the continental U.S. to ask them if they are
willing to donate, and to set up further testing on them. It is so humbling to
know that complete strangers are being called up right now to save Ryan’s life.
November 22, 2013
A Second Bone Marrow
Biopsy
Ryan’s bone marrow biopsy yesterday was fairly uneventful.
He was such a trooper. Our appointment started at 8:00AM. He couldn’t eat
breakfast due to the anesthesia, and his procedure wasn’t until almost 11:00. I
went prepared to hear him say “I’m hungry” a million times throughout the
morning while we were having labs done and meeting with the doctors, but he
didn’t say it once. Then, as he was waking up after the biopsy, he looked cold,
so I asked him if he wanted his blanket. His immediate response: “I want some
food!”
While we were there, we met again with one of the
doctors/researchers that we saw last week. He had discussed Ryan’s case with
the other researcher and Ryan’s Hematologist/Oncologist. All three doctors
agree that, unless the bone marrow biopsy shows signs of recovery (or Ryan goes
into remission all of the sudden), the right thing to do is to move toward transplant.
We should have initial biopsy results in about a week and our consultation with
the Seattle Cancer Care Alliance transplant team is still set for December 9th.
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