Saturday, May 31, 2014
Day +1 Back in Isolation
Today Ryan was sick most of the day. At one point, I was trying to help him take care of business on one end with my right hand, while holding the barf bucket up to his mouth with my left hand. I felt so bad for him. He looked completely miserable. He had a couple hours mid-day where he seemed to feel better, but later in the day it returned.
When he started to feel better in the AM, and wanted to ride a bike out in the hallway, a culture came back showing that he may have C-Diff, which is a contagious bacteria that can cause tummy troubles. Even Purrell will not kill it - you have to use the surgical scrub soap. It is somewhat common for transplant patients to get it because the chemo that destroyed Ryan's faulty bone marrow also destroyed healthy cells and the "good bacteria" in his stomach that would normally fight of the bad stomach bacteria. This has put us back in isolation until they get more test results back tomorrow afternoon. If the test is negative, we will be out of isolation. If it is positive, Ryan will get antibiotics and we will have to remain in isolation approximately 14 days.
Ryan got to be unhooked from his IV pole for 30 minutes today while he got upgraded to a larger double pole (normally, he is hooked up 24/7, even for showers and baths.) It's too bad he was in the bathroom getting sick during most of that time and wasn't able to enjoy some temporary freedom.
Capes 4 Heros visited today and let us pick out a super hero cape for Ryan. They wrote down the one we selected and then came back to the room about 10 minutes later with a big "R" sewn on it. Although Ryan originally declined a cape because he wasn't feeling good, I picked one out for him on their second pass around the unit, and it did make him smile when he got it. When I walked down the hall later, it was cute to see all the little bald chemo kids through the glass doors of their rooms playing with their capes on. (Note: although I am technically in isolation just because Ryan is, I am allowed to walk through the hall as long as I don't loiter or use any of the common areas. Thank goodness, because Starbucks doesn't deliver.)
Friday, May 30, 2014
Day 0 ...continued
Although yesterday was "Day 0" Transplant Day, Ryan technically ended up having two day zeros because the infusion of bone marrow continued past midnight.
Today was fairly peaceful. Ryan slept most of the day. However, He is having some bladder/kidney pain and doesn't want to eat or drink anything because he is nauseous and dry heaving several times a day, which is normal and okay because he is on TPN (IV nutrition.) In fact, he seems to have a super hyper-sensitive sense of smell right now and the slightest odor of food is making him feel sick. He got upset when I brought a piece of toast into the room earlier and asked me to take it out. So, now if I want to eat, I have to go down the hall to the cancer unit parent lounge and quickly eat before he needs me for something. I am always afraid to be gone for more than a few minutes in case he gets sick or needs help going to the bathroom. On the bright side, the view from the lounge is spectacular and calming, especially on a sunny Seattle day like today!
P.S. Speaking of Seattle, there are three different Starbucks in this Hospital, including one that is open 24 hours a day! It is really dangerous for me to have access to a 24-hour Starbucks that is less than 100 steps from our room (I counted this morning). It is way too convenient... Thankfully, my mom knows me well and gave me a gift card the other day to help fund my addiction. I will have to wean myself back off the caffeine when we are discharged!
Today was fairly peaceful. Ryan slept most of the day. However, He is having some bladder/kidney pain and doesn't want to eat or drink anything because he is nauseous and dry heaving several times a day, which is normal and okay because he is on TPN (IV nutrition.) In fact, he seems to have a super hyper-sensitive sense of smell right now and the slightest odor of food is making him feel sick. He got upset when I brought a piece of toast into the room earlier and asked me to take it out. So, now if I want to eat, I have to go down the hall to the cancer unit parent lounge and quickly eat before he needs me for something. I am always afraid to be gone for more than a few minutes in case he gets sick or needs help going to the bathroom. On the bright side, the view from the lounge is spectacular and calming, especially on a sunny Seattle day like today!
P.S. Speaking of Seattle, there are three different Starbucks in this Hospital, including one that is open 24 hours a day! It is really dangerous for me to have access to a 24-hour Starbucks that is less than 100 steps from our room (I counted this morning). It is way too convenient... Thankfully, my mom knows me well and gave me a gift card the other day to help fund my addiction. I will have to wean myself back off the caffeine when we are discharged!
Thursday, May 29, 2014
Day 0 TRANSPLANT DAY!!!
It feels really surreal to have this day arrive. This is the
type of thing that happens to other people’s children. Families you see in the
news, on a Children’s Hospital Telethon, or maybe in a made for T.V. movie.
Never would I have imagined it would happen to my child.
Eleven months ago, he was a healthy, active 4-year old
starting swimming lessons and looking forward to a trip to his favorite place –
the beach. With one phone call on a Monday night at 8:11 PM, that all changed.
We received a call after a doctor’s visit for a minor cold and heard the words
“There is something wrong with his bone marrow” and “You need to take him to
the ER right away.”
If this would have happened 30 years ago, Ryan would have
likely been dead within a matter of months. However, today, we can potentially
cure bone marrow failure diseases, blood cancers, and other life-threatening
illnesses. The cure is you. You potentially have living within your body,
something that can save someone else’s life – a small amount of your bone
marrow or stem cells.
Although Ryan’s donor is giving actual bone marrow, a
majority of patients can now be cured with stem cells taken from a donor’s
bloodstream, which means that donating is as easy and painless as donating
blood. If you haven’t done so already, please consider joining the national
bone marrow registry at http://bethematch.org/. It is as simple as providing
some general information online, getting a kit in the mail, swabbing your
mouth, and sending it back.
Each year nearly 18,000 people, might benefit from a
potentially life-saving bone marrow transplant and 3,000 people in the U.S.
die each year while waiting for a bone marrow match. You might be someone’s
only match.
We don’t know much about Ryan’s donor at this point. We know
he is a healthy 21-year old male with a B+ blood type. We can assume he is not
from Europe because we didn’t have to sign a mandatory disclaimer for Mad Cow
Disease that patients in the U.S.
have to sign if their donor is from Europe . We
also know that he is receiving “fresh” marrow as opposed to frozen, so we know
the donor is within a same-day flight distance. We suspect he is from the East
Coast because the marrow is scheduled to arrive late in the day. Other than
that, we may never know. However, I am hopeful he will be interested in meeting
us a year from now when the mandatory waiting period has expired.
Here is how things should play out today:
Ryan’s nausea and pain has been increasing, which is
completely normal at this stage. In fact, it seems that every opportunity the
team gets, they remind me that things will still get worse before they get
better. They have started him on some morphine today and he is currently
sleeping peacefully.
The donor bone marrow will be hand-couriered by a volunteer
with the Be The Match organization, who will likely board a flight holding the
marrow in one of those little red and white igloo coolers. The marrow is
expected to arrive in Seattle
at 4:00 PM (I assume at SeaTac), and will then be delivered to the SCCA lab where
it will be processed. They have to remove any bone fragments and remove some of
the red blood cells because the donor is a different blood type than Ryan. It
will then be brought over to Seattle Children’s where they will double and
triple check to make sure everything matches. (The estimated time of arrival is
8:00-9:00 PM.) Then, the bag will be hung on Ryan’s IV pole and it will enter
his body similar to a blood transfusion. Many people think a bone marrow
transplant is a surgery, but it is not. The actual transplant is fairly
anti-climatic, other than being a really important milestone.
Please pray and have positive thoughts for Ryan and his
donor as this is a big day for both of them!
Note: The beach pictures were taken only a few days after
diagnosis, at Ryan’s favorite place – Cannon
Beach , OR
Wednesday, May 28, 2014
Day -1: A Day of Rest
Ryan slept most of the day and didn’t eat or drink anything
until about 9:00 PM when he decided he wanted microwave popcorn.
Coincidentally, his Grandma had dropped off one bag of it to the hospital
earlier in the day, so that is what he had and then he went back to sleep.
We received some good news late in the afternoon – Ryan’s
virus panel and chest x-ray came back negative. However, he still has had a few
coughs that sound like he has a bunch of junk in his throat. I think it may be
the start of Mucositis, which is the painful inflammation and ulceration of the
mucous membranes lining the digestive tract, usually as an adverse effect of
chemotherapy. It affects almost all patients undergoing high-dose chemotherapy
and bone marrow transplantation.
Between the nausea and potential pain of Mucositis, the team
gave Ryan Zofran and Oxycodone earlier in the day. He really seemed to enjoy
that combo and was acting really funny. He was talking really slow and slurring
his words like a drunk person and made the following statement:
"I like this sleepy medicine because it makes me lazy,
and I like to be lazy. Ahhh, feels so good - best day ever. On my muscle parts
it feels like a clump of fluff and my bed feels wavy."
The low point of the day was when I showed Ryan a calendar I
made to help us keep track of the days pre and post transplant. He started
crying and said “I didn’t want you to put medical stuff on it!” Then he
insisted I erase it and got furious with me when I told him I couldn’t (umm… it
was written with a sharpie). I am not sure what that was all about, but I just
put it away so he didn’t have to see it.
I have wondered how Ryan feels about the transplant and
whether he has any concept of the fact that it is potentially saving his life.
We have never said or implied to him that he might die or that the transplant
is needed to save his life. We generally talk about how his bone marrow isn’t
working right and that there is a man who is going to share some of his good
bone marrow to help make Ryan better. Out of curiosity, I asked him, “If you
could say something to the man that is giving you his bone marrow tomorrow,
what would you want to say to him?” He looked me straight in the eye and
wholeheartedly said two simple words: “Thank you.”
Tuesday, May 27, 2014
Day -2 Last Day of Chemo: Fludarabine & rATG
The day started with news that Ryan’s ANC has reached zero. Basically, his immune system has shut down. The white cells in his marrow are gone and his bone marrow will never be able to make them again. This news came a day or two earlier than I expected, because yesterday his ANC was over 600. I couldn’t help but dwell a little bit on the fact that a major system within his body that sustains life is now completely dead. He is now totally dependent on the success of this transplant.
As you may have noticed by the titles of my posts, the pre-conditioning days prior to transplant are counted down as negative numbers, similar to a rocket launch. In Ryan’s case, the countdown officially started on Day -6. Transplant day, Thursday May 29th, 2014 will be considered Day 0. Many transplant patients also call it their “re-birthday” or “new birthday”. After all of this, I think it is only fair that Ryan will now have two birthdays to celebrate each year.
After transplant, days are counted as positive days going up (Day +1, Day +2, etc). The first major milestone will be day 100. It really is just a day that most transplant patients circle on their calendar and strive to reach. It is when the greatest risks for critical side effects are past and when, statistically, the chance of long-term survival increases quite a bit.
Ryan has coughed a few times in the last 24 hours, which is concerning because his body cannot fight off illness right now. The team has sent a virus panel to the lab and chest X-rays were taken. We are hoping to have all the results by mid-day tomorrow. In the meantime, Ryan is in isolation as a precaution.
Also, today he needed the dressing over his hickman line changed because the entry site has been bleeding the last few days. However, they installed the hickman line on the same side of his chest where they removed his port and he is bruised and very sore there. The plastic dressing that they installed during surgery looked like it had melted into his skin. A woman from IV therapy started to try to remove it, and even with adhesive remover, it did not want to come off. Ryan was screaming in pain like someone had poured boiling water on him. The woman seemed to think Ryan was just screaming because he was scared. I had to intervene and tell her that his scream was definitely a scream of pain. Then, I took over trying to get the dressing off with two different types of adhesive remover. It took forever because it kept hurting him and I had to keep stopping, but we eventually got it off. Sometimes its little things like that that get to me the most.
Ryan’s appetite was non-existant for the majority of the day. They went ahead and started TPN (IV nutrition) because they don’t feel like he is getting enough calories and nutrients. However, by late afternoon when Brad visited, Ryan’s steroids kicked in and he got his appetite back. Of all things, he asked me to go get fish and chips for him. So, he stayed with Dad and took a bath while I went down the street to retrieve his fish and chips.
He ended the day in a pretty good mood and, hopefully, he will have a better day tomorrow. It will be a “day of rest” with no chemo.
Monday, May 26, 2014
Day -3 Chemo: Fludarabine/r-ATG & “Roid Rage”
I am suffering from sleep deprivation at the moment, so
please bear with me if I ramble on too much. Ryan is connected to IV lines 24
hours a day. He even has to take a bath or shower with his IV pole in tow, and
yesterday, there were issues with air getting into his line. About every 5-10
minutes the alarm on his pole would go off and someone would have to come in
and try to get the bubbles out then reset the machine. If someone didn’t
respond within a few minutes, the machine would increase in volume until it would
be at and almost unbearable level. This went on until around 2:00 AM, when one
of the nurses was able to resolve whatever the problem was.
The morning started off really rough for Ryan. He wasn’t
hungry for breakfast, didn’t feel like drinking anything, was looking like he
was going to throw up, and had an overall look of being miserable. He couldn’t
even take his AM pills. The team thought, and I agreed, that his medications
should be switched over to IV. We also discussed that he was probably done eating
for awhile and would likely need to start total parenteral nutrition (TPN) via
IV. However, they generally try to delay switching someone to TPN for as long
as possible because it is very hard on the liver. Then, after requiring TPN for
awhile, if things don’t improve, they will insert a feeding tube instead. We
were able to dodge all of that for today, because around 1:30 Ryan bounced back
and decided he wanted to eat and play. He managed to keep down everything he
ate, but he didn’t want to eat anything for dinner and now he is feeling
nauseous again.
Another side effect of transplant conditioning has started
to kick in as well: “Roid Rage”. They are giving Ryan high dose steroids in an
effort to prevent Graft Verses Host Disease (GVHD). GVHD can be chronic or
acute and can be as minor as a slight temporary skin rash to permanent damage
of major organs. It is a big concern and is watched for very closely. The
problem with steroids is that children are generally much more sensitive to the
side effects. In fact, they can act totally out of character to the point where
they are extremely difficult to reason with, and it can seem that they have
turned into a completely different person.
Ryan has definitely had moments of rage the last two days.
Something as simple as him getting cold after his shower and thinking I am not
drying him off fast enough can send him into a rage. He will yell at me,
scrunch up his face and glare, then clench his fists down by his sides so tight
that his upper body starts to shake. It is hard to see your child act like
that, especially when it is most often direct hatefully at you. The good news
is that the side effects go away once the steroids are stopped. The bad news
is, that could be months in the future, depending on how things are going.
We also had a few visitors today. Grandma Terry and Grandma
& Grandpa N. stopped by for awhile. Ryan didn’t feel good most of the time
and was fairly anti-social. Then, later in the afternoon, a fellow transplant
mom, Valancy, came to visit. Valancy’s son Julian had aplastic anemia and
successfully received a bone marrow transplant here at Seattle Children’s a
couple years ago. She also started a Seattle Children’s Hospital Guild called
Julian’s Dinosaur Guild (http://www.juliansguild.org/),
which is a 501(c)(3) research focused Guild with the mission of “making
aplastic anemia extinct”.
In a round about way, I met Valancy through a Guild
fundraising event last September. At the time, I was trying to get an
appointment for Ryan with Dr. Akiko Shimamura, one of the leading bone marrow
failure experts in the world. I learned that Dr. Shimamura was going to be
speaking about the latest developments in aplastic anemia research at the
Julian’s Dinosaur Guild fundraiser so I decided to attend. Not only did I get
to meet Dr. Shimamura and was told that I could email her directly for help in
getting Ryan an appointment, but I also unknowingly happened to sit at a table
with one of Valancy’s friends, which led to us meeting. Ironically, Valancy had
been following my blog about Ryan. Since then, she has been really encouraging
to me and has been a great support in “showing me the ropes” with SCCA and
Seattle Children’s. I am really grateful that she has generously shared her
time with me and put me more at ease in realizing this process can be very
successful.
Day -4 Three Types of Chemo (Treosulfan / Fludarabine / r-ATG) & Inspiration from a Nobel Prize Winner.
Upon entering the transplant floor at SCCA, proudly
displayed on the wall is a modest picture of the late E. Donnall Thomas, who is
known as “the father of the bone marrow transplant.” In 1957, in a paper
published in the New England Journal of Medicine, Dr. Thomas theorized that leukemias,
lymphomas and other blood disorders could be cured with an unorthodox, radical
procedure: destroying a patient’s blood and immune system with lethally high
doses of chemotherapy and radiation, and then rescuing them from the brink of
death via a transplant of healthy bone marrow.
In the late 1950’s, Dr. Thomas performed the first
successful human bone marrow transplant. This was during a time when rare bone
marrow failure diseases, such as Aplastic Anemia, were almost always fatal
within months of diagnosis.
Many prominent physicians continued to doubt Dr. Thomas’
theories about bone marrow transplantation well into the 1970’s. However, he
was self-admittedly stubborn and never gave up. In 1990, Dr. Thomas won the
Nobel Prize for his pioneering work in bone-marrow transplantation. To date,
over 1 million bone marrow transplants have been performed. Thanks to Dr.
Thomas’ persistence, and the selfless act of a complete stranger who has agreed
to donate his bone marrow, Ryan will join that list of patients in 4 days.
“Imagine coming up with an idea, making it a reality and
touching that many lives.” – Fred Appelbaum, Thomas’ friend and the Executive
Vice President & Deputy Director of the Fred Hutchinson
Cancer Research
Center .
This morning, Ryan had fun again with Grandma Terry. They
tested out the various ”vehicles” available on the SCCA unit here at Seattle
Children’s. He had to settle on a pink girl’s bike because his legs were too
long for the other rides he tried.
Later in the day, a new chemo was added to the mix:
Anti-Thymocyte Globulin (r-ATG). It is made from rabbit antigens against human
T cells, and is used to prevent Ryan’s body from rejecting the donor’s bone
marrow (graft rejection). Ryan had a similar drug last July in an attempt to
“reboot” his immune system to fight Aplastic Anemia, but it was made from horse
antigens (h-ATG). Within 2 hours of starting the r-ATG, Ryan began puking. He
has two more days of this particular chemo drug. However, “serum sickness” from
this drug, along with bone and muscle pain (among other things) can last for
weeks or longer, after receiving the drug.
We ended the evening with his nightly bath, followed by a
required wipe down with warm cloths that contain chlorhexidine (a disinfecting
ingredient also used in surgical scrub). This is necessary because, as Ryan’s
bone marrow is destroyed, his ability to fight off germs, including those that
live naturally on human bodies, will be nonexistent. The problem, is that he
seems to have a skin sensitivity to the wipes and his back itched so bad last
night that he was in tears. Tonight, I let the wipes cool while he was taking
his bath and I asked him to try them again at the cooler temperature. He was
scared and upset, but I was surprised when he let me go ahead and wipe him
down. I told him I am really proud of how brave he is and he said “No, I’m
not.” And I said, “Yes you are - there are a lot of grown ups that are not as
brave as you! It is okay to cry or be upset when things hurt or scare you. What
makes you brave is that you keep trying anyway.”
Saturday, May 24, 2014
Day -5 Chemo: Treosulfan/Fludarabine & Moving Day!
This morning the chemo started to take its toll on Ryan’s
appetite. He really wanted pancakes and bacon for breakfast, but when he tried
to eat, everything tasted bad. He only ate 2 bites of pancake, which is highly
unusual for him. Normally, if he could have pancakes for every meal, he would.
The highlight of the day for me was being able to change
rooms. For months, everyone has been telling me how great the new SCCA wing is
at Seattle Children’s and what a great view there is from the rooms. The 7th
Floor is for younger kids and the 8th floor is for teens and young adults.
However, Thursday when we arrived they put us in a room on the teen/young adult
floor where our only view was the rooftops of the adjacent buildings and their
HVAC units. I couldn't imagine looking out at that for 4-6 weeks and I noticed
some rooms had opened up on the “view” side. I pleaded my case to the charge
nurse and, since we were on the wrong floor to begin with, she was able to
justify moving us downstairs to a room with a view that had just opened up.
Now, we have a nice calming view of Lake Washington and Mt. Rainier
(The attached picture that I snapped with my phone doesn't do the view
justice.)
Ryan’s day was made by a visit from Grandma Terry. My mom
being here allowed me to run home briefly (about an hour or so away), do some
laundry, and grab some things that I forgot. Ryan’s one request was that I
bring back the comforter from his bed at home. When I delivered it back to him
he said “Ahhhh – now I feel at home!”
P.S. The day started out on a humorous note for me. Parents
are allowed to shower in room here. However, today I forgot to take towels into
the bathroom with me and I realized that after I was already in the shower.
Unfortunately, the bathroom faces toward the entrance of the room, which
consists of giant sliding glass doors. I peeked out hoping that the curtain was
closed across them, but no such luck. I thought about dashing out soaking wet
and naked to grab the towels, but I knew that as soon as I tried that someone
was sure to walk by. So, I resigned myself to the fact that I was going to have
to dry off with paper towels. The funny part is that the bathroom has one of
those automatic paper towel dispensers so I had to waive my hand in front of it
and wait for it to spit out a 5 inch length of super thin paper towel, then it
would stop and I would have to wait a few seconds for it to reset, then waive
my hand again to get another 5 inches to come out, and then repeat several more
times… Tomorrow I don’t think I will be forgetting the towels!
Friday, May 23, 2014
Day -6 The Start of Chemo: Treosulfan & Fludarabine with some Sandbox Therapy
Ryan and I are both pretty tired today (I think me more so
than him). Between getting up at 4AM
yesterday, then getting to bed late last night, followed by getting woken up
every so often after that for the nurse to check vitals, give meds, take blood
for labs and weigh him, I feel like I have a hangover (without having anything
to drink). All the side effects without
any of the fun! (Note: Ryan has to be weighed every morning between midnight
and 4AM. It’s a crazy time to get a kid out of bed, but they need the data
before the doctors do rounds in the morning.)
Ryan received two chemotherapy drugs today by IV, and so far
he hasn’t had any adverse reactions.
They told me that he may start feeling sick in the next day or two, but
that kids normally do fairly well the first few days.
What did surprise me today was that he needed a red blood
transfusion. His hematocrit has been fairly stable (but still low) for the last
three months (around 25-27), which was unusually high for him, and nobody had
an explanation for it. However, it
dropped to 21 suddenly. There is no
explanation for the drop either, because he had not yet started chemo.
The highlight of the day for everyone (hospital staff
included), is the indoor sandbox I made for Ryan. It has kinetic sand in it, which is a type of
sand that is mixed with polymers. It
feels a little bit like dry cookie dough and sticks to itself like moist
sand. It has been keeping Ryan busy most
of the day and everyone that comes in the room is really intrigued by it. In fact, his nurse put on clean gloves and
played with him in it for a little while earlier.
The other thing that seems to have created a buzz among the
staff is Ryan’s ability to easily take pills at his young age, along with my
giant cache of flavored capsules that I brought in to assist him in taking any
pills that might taste bitter (I put the pill inside a capsule). The nurse told me that they even looked them
up online this morning to check out pricing, etc. I have now ordered them from “Capsule Depot”
twice, with this last order consisting of several thousand, because we are sure
to need them when Ryan is discharged and on many oral meds. I keep wondering if I have now made it onto the
DEA “Watch List.”
Thursday, May 22, 2014
Day -7 We Are Checked In and Ready to Go
We were up by 4:00 AM this morning and checked into Seattle
Children's at 6:00. (This is after I stayed up until almost midnight packing
and then spent an additional hour or so trying to shut off my brain and go to
sleep.)
Ryan had surgery to remove the port in his chest and replace
it with a different type of central line called a Hickman. One of the main
differences is that there are two access points, which is necessary because of
the amount of simultaneous things that will be going in and out of his body all
at once (chemo, blood draws, IV fluids, pain meds, etc.)
A second surgeon performed a procedure to remove a tiny
piece of testicular tissue. Half of the sample is being sent to Children's
Hospital of Philadelphia (CHOP) as part of a clinical trial to experiment with
multiplying the stem cells. In primates, researchers have seen some very
encourage results in restoring fertility when they have done this same process
and then re-implanted the stem cells later. The other half of the sample is
Ryan's to keep. It will be cryopreserved and stored in a freezer at the University of Washington for his future use, if he
desires (or even needs it; there is no way to know whether the chemo will
affect his fertility, but it is a risk.) By the time he is an adult, the hope
is that the research will have progressed to successful re-implantation in
humans, resulting in live births.
I managed to squeeze in a fair amount of work during Ryan's
surgery and again later in the afternoon. I am trying to average working at
least half of the time so that I don't burn through my PTO so fast. Some days I
get in a half day, sometimes I am able to work a full day, and then other days
I have to take a day of PTO. It's a challenge, but I am trying really hard to
juggle everything and make it all work. I am really thankful for the support of
my boss and co-workers in being understanding and flexible. Hopefully by this
time next year, things will be mostly back to normal.
Tomorrow, chemo starts to destroy what remains of Ryan's
bone marrow. Once chemo starts, there is no going back. I was forewarned today
that the team will be showing up in blue hazmat suits in the morning.
Tuesday, May 20, 2014
Consent for Transplant
Tomorrow will conclude Ryan’s pre-transplant work-up with
SCCA. In the past two weeks Ryan has had
an EKG, Echo-cardiogram, CT scan, MRI with Anesthesia and has been poked,
prodded and swabbed in unmentionable places to test for everything from simple
blood counts to every virus known to man.
Tomorrow he has one last clinic visit, where they will
likely re-swab and double check to make sure he hasn’t picked up a virus in the
last few days. We will also have what is
called a “Data Review Conference” with the doctors, where I will be asked to
sign consent forms for the transplant.
I think back to the first few years of Ryan’s life. I fed him organic food, plenty of fruits and
vegetables, interviewed countless daycares until I found the best, and spent
two weeks researching the safest car seat. Now, I am consenting for him to be part of a
clinical trial that includes administration of a chemotherapy drug that is not
even yet approved by the FDA. What a contrast. However, I know that out of all
of the transplant protocols I reviewed, I am doing what I have always done for
him and am selecting what I think the best option is. From there, I just have to remind myself that
the rest is out of my control.
Wednesday, May 7, 2014
“No More Delays; We’re Going”
Those were the words from Ryan’s transplant doctor
today. His bone marrow transplant will
be May 29th. She stated that
“His continued dependence on platelet transfusions and his dangerously low ANC
are not compatible with life.”
I actually half expected another delay. I recently noticed some differences in his
labs in the past month. He has had a lot
of unusual red cells noted on his labs: his MCV (mean cell volume) has been
steadily climbing, he has had teardrop and elliptical shaped cells, along with
polychromasia (an abnormally high number of red blood cells found in the
bloodstream as a result of being prematurely released from the bone marrow
during blood formation.) All of this
strange red blood cell activity has resulted in his hematocrit staying fairly
level (although still low), and he has gone almost three months without a red
blood transfusion (he normally only goes about a month in between
transfusions).
On the other hand, his platelets and ANC have tanked. He has been requiring more frequent platelet
transfusions and is considered neutropenic due to his low ANC. This puts him at great risk for hemorrhage
and infection. His doctor said that even
if his red cell line / hematocrit was completely normal, she would still
recommend transplant due to the other two cell lines being continually low.
As a result of the recent changes noticed in his cells and
counts, the transplant team coordinated an early bone marrow transplant last
week rather than waiting for our “re-arrival” at SCCA this week. Preliminary
results show his cellularity at around 40%, which is lower, but there still are
no clues as to the exact cause of his bone marrow failure.
The pathologist who has reviewed all of Ryan’s biopsies over
the last year said that his marrow looks “a little less normal” in this most
recent biopsy than it has in the past, and it does have some “pre-dysplastic”
characteristics. With MDS the marrow
becomes dysplastic (“dysplastic” refers to abnormal growth or development.) It seems that maybe Ryan is moving toward
MDS, but there still is no solid evidence.
SCCA is currently doing another round of cytogenetic testing on this
sample. Results should be back in a few
days, so if a clear sign of MDS is discovered his diagnosis could change, but
as of 1:00 this afternoon, his official diagnosis is “Underlying Bone Marrow
Failure.”
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