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!

Thursday, May 29, 2014

Given a Second Chance at Life

Thursday May 29, 2014 11:05 PM
Happy Re-birthday buddy!


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 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 (, 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.”