Be the Match

In July, I got an e-mail acknowledging my anniversary from joining the National Bone Marrow registry.  In 2008, as Tyler was just beginning his path towards a bone marrow transplant, I went to my local blood bank and swabbed a Qtip from their registration kit around my mouth.  With a small donation ($47) and that Qtip, I promised to honor my commitment to donate my bone marrow to a person in need.

I have not been asked to donate, but hundreds of e-mails/letters are sent out every day to potential matches.  Even with all of that, there aren't quite enough of us on the list.  There is an especially great need for people with varied ethnic backgrounds, as the closer your heritage matches the person in need, the more likely you are to match their HLA combination.

With a few friends expecting little babies this year, I also want to mention that you can donate cord blood from your baby's birth.  Storing cord blood specifically for your own child's needs can be expensive, but donating it to the public bank increases the likelihood that you will be able help someone in need!

If you haven't joined the bone marrow registry, please think about doing so this month in memory of Tyler.  It is easy and you could give the gift of life to someone battling cancer!  Go to the Be the Match for complete details!

How Donors are Selected

How Donors Are Selected


When you join the Be The Match Registry®, you were told patients are searching for a match.  But what exactly is being matched?

The short answer: HLA. Human leukocyte antigens (HLA) are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. A close HLA match between patient and donor is the most important factor in selecting the best bone marrow donor for a patient.



A close match

There are many HLA markers, but matching only a small number of them is critical to a successful transplant.

We test most new members for 6 HLA markers when they join the Be The Match Registry. By testing for a basic level of HLA markers, we keep tissue-typing costs low — we want to be able to add as many registry members as possible to help all searching patients find a matching donor.



Next step

A patient’s doctor usually tries to select several potential donors who appear to match the patient at a basic level. The doctor then asks for additional testing to find a donor who matches the patient at a detailed level.

Decisions to Make

At our Thursday clinic, Dr Oehler was full of new ideas on how to treat Tyler's disease.  As this was one of the things we have been praying for, I am happy to share the blessing with you.  She recently traveled to Barcelona to speak at the European Hematology Association conference, so she was able to talk about Tyler's condition with leading experts from around the world.

One of the contacts she made was with the folks from Ariad.  It sounds like the next phase of the trial will be up and running in both Portland AND Seattle this fall.  If Tyler's health holds until then, we think he will be a good candidate for the trial at that time.

She also indicated that Pfizer was willing to offer Tyler a spot on a trial that they are sponsoring.  We had some concerns about this path because, while the drug looks like an interesting possibility, Tyler would be the 7th human to take it.  As they are currently testing for toxicity in humans, they are starting at very low doses and working their way up gradually.  With his disease being so nasty when he stops taking his nilotnib, I get nervous about the idea of Tyler stopping that drug for any period of time.  The discussion about this possibility did help me to understand a lot more about how drugs work their way into our pharmacy.  We'll have to talk about that more in a future post.

A final option that we discussed was the possibility of a cord blood transplant.  We had considered a 2nd transplant (with Tyler's mother as donor this time), but have had concerns about whether the disease would again evade the graft.  In addition, they estimated that the chance of success (defined as eradication of the disease) was only 10%.  Since we know that the transplant presents several risks and lifestyle adjustments, we have been weighing that option against our desire for good quality of life.

The doctors are suggesting that a cord blood transplant might have a better chance at success, as they can actually choose blood with mismatched HLA markers and try to get a stronger graft versus host response.  Also, many people have donated the cord blood from their child's birth to the registry and we have access to those within a short window of time.

We have decided not to move on any of these options right now, but are biding our time until the fall.  Hopefully, Tyler can enjoy most of the of summer and have good health until then.

Can We Make a U-Turn?

With great regret, we must share that Tyler's disease appears to have advanced again.  We went through a full day of testing today, to try to get more information about what exactly is happening and what we can do to fight it, but we are VERY discouraged by this news.

Over the last week, Tyler has had increasing pain in his upper back and shoulders.  As we took a short trip to celebrate our 3rd anniversary, he initially attributed that pain to sleeping in unfamiliar beds.  Unfortunately, the pain got worse each day -- even after we returned home.  We were in contact with our oncologist on both Monday and Tuesday, with the recommendation that we go to the ER if Tyler was in too much pain to handle.  On Tuesday, we finally did just that.

In the ER, we convinced someone to get an MRI for Tyler's back to see if they could see anything that might be causing his pain.  We were absolutely shocked when the ER doctor came in to tell us that it appeared that Tyler had tumors of some sort up and down his spine.  Much of what she said didn't make sense to us, but the doctors there were able to give Tyler some stronger pain medication (compared to Tylenol at home) and he finally got a little bit of relief.

On Wednesday, we got an appointment at SCCA to find out what was really going on.  While there, we learned that leukemia CAN form solid tumors of white blood cells, although this is rare.  We also learned that Tyler's blood test from that morning was showing blasts.  Blasts are immature white cells that don't really go any of the work they are supposed to do, compared to partially developed white cells that are just lazy (more common in chronic leukemias).  In the phases of leukemia, showing a high amount of blast cells indicates that the disease is progressing to the next stage.

With the fact that Tyler's pain increased rapidly over the period of one week and he showed blasts 1 month after his last test at SCCA, this is NOT a good sign.

While at SCCA on Wednesday, we learned that Tyler has 2 tumors along his spine that are causing him problems, although others likely exist.  One is causing the pain in his back and the other is causing numbness in his hand.  Additionally, a new mass has been identified in his upper left chest area.  They biopsied the mass on his chest today, and are talking about radiation possibly shrinking the tumors in his spine.  One concern about getting radiation at this point is that Tyler has already received so much, he might not be able to handle more.  Each body has a limit to how much it can receive.

Thursday's blood test showed even more blasts than the previous day, so it is likely that whatever we do will have to happen very soon.  While we wait for test results and more meetings with doctors next week, please do keep Tyler in your thoughts.  We are both so very discouraged that his journey is not yet over.

Sharing the Path

My friend, Janell, is beginning her walk down the transplant path today.  Janell was diagnosed with Multiple Myeloma in October 2009 and has been on a chemo regimen since then, preparing for an autologous transplant.  An autologous transplant is when the patient donates their own cells to the transplant.  Typically, the doctors get the person into remission, harvest the stem cells, and then (I think) freeze them.  At some later date, they return the harvested cells to the patient.

Janell is the kind of person who brings light to the people around her through her soft voice, her kindness, and her singing.  If you would be so kind as to send your thoughts and prayers her direction over the next few weeks, I would appreciate it.

She will be going through the consultations and preliminary tests this week and next.  Her transplant is tentatively scheduled for sometime in the 3rd week from now.

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!

Tyler

Save a Life --- Join the Bone Marrow Registry

Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible, just like Tyler has experienced. They depend on people like you and me to offer our this lifesaving gift. You have the power to save a life. Take the first step today by joining yourself!

When you join the Be The Match Registry, you become part of every patient's search for a bone marrow donor. You could be the one to save a life.

And now, during the Be The Match Marrowthon, you can join online for free June 8 - 22, while funding remains. Our Marrowthon goal is to add 46,000 new members to the registry. Be one of them!

When you join, you can also choose to make a financial contribution. It costs about $100 to add a donor to the registry. Your tax-deductible gift in any amount creates the opportunity for more donors to join.

It's easy to join the the Be The Match Registry at: http://www.marrow.org/JOIN/Join_Now_Special/Marrowthon09/join_now_mt09.html

1. Confirm you meet basic registry guidelines.
2. Complete the online form and order your registration kit. This step will take about 30 minutes.

The cost to add you to the registry has been covered, but funding is limited. To join for free, you must complete the online registration step before June 22 AND before funding limits are met.

3. Follow the instructions in your kit to collect a swab of cheek cells and return the kit.

Day 26 - A Day of Rest

Tyler and I had a pretty low key weekend, which was much needed after the craziness of the last week. Tyler's aunt, Libby, came up for a few hours on Saturday to get a putting lesson from Tyler. It sounds like she picked up a few tips, so I think they are both hoping to get out golfing again soon.

My parents also stopped by (and brought homemade Won Ton soup from my sister) to say "hi" on Saturday evening. My mom's family is planning a week long getaway in August, so we had some fun talking about the golf that the guys planned while in Chelan. I think my father is secretly delighted that Tyler loves to play so much golf. I'm hoping that they can both get over to the golfing place that Tyler found on 128th soon.

I have another busy week at work, so I'll be gone from Tyler for much of the time. But the good news is that my software conversion is going REALLY well and I haven't forgotten everything I'd learned about the software. ;)

As for the week ahead, Tyler has an important bone marrow aspiration and biopsy coming up this week. This test (scheduled for Wednesday) will help measure the success of the transplant. Tyler asked the doctors about when he can say that he is "in remission" and they told him that his bone marrow test would be an important part of that. The goal is for them to see absolutely NO signs of leukemia in his marrow. We likely won't know the results right away, but will be anxiously awaiting the news anyways.

They actually had Tyler start back on his Tasigna last week to make sure that any remaining leukemia in his body will be controlled until the new immune system is fully functional (for about the first year). After that year passes, I'm hopeful that Tyler might get to move off the Tasigna again and have a more normal (translation: less pill intensive) life!

Other than that, Tyler also has his regular blood draws Monday and Thursday and clinic visits on Thursday. Scott (Tyler's dad) is coming to take Tyler to his Monday appointments, so those two will probably go crazy talking sports all day long.

Day 4 -- In a Drug Haze

It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.

One of the side effects from his chemo yesterday are long bouts of violent hiccups. He had something similar with his cranial spinal radiation, but seems to be suffering through these bouts even longer.

Today, they started Tyler on his graft versus host disease (GVHD) drugs. GVHD is a condition where the transplanted cells (graft) attack the patient's organs (host). It often begins as a rash (as your skin is the largest organ you have), but can lead to even more serious complications. Acute GVHD occurs within the first 100 days post transplant, while chronic GVHD appears more slowly than that.

GVHD is more likely if the donor was unrelated to the patient or if there is a tissue mismatch between the patient and the donor. In Tyler's case, his dad is only half match (think back to High School Biology and genetics training -- half of the genetic material is from the dad and half from the mom) so it is likely he will experience some GVHD. In fact, some GVHD is good and is termed the Graft versus Leukemia effect. This recognition of the leukemia cells as unhealthy or foreign can reduce the rate of relapse, as the transplanted marrow and it's blood can kill off any leukemia that might be hiding in the patient.

Tyler's protocol called for the introduction of tacrolimus and mycophenolate mofetil today to combat the possible GVHD. He will likely continue to take those until 6 months post transplant.

Another new medicine today was Filgrastim. This injection actually stimulates the growth of neutrophils (a kind of white blood cell) in the body. Its goal is to help Tyler's new immune system grow as quickly as it can. He will likely continue to receive this injection until his counts have recovered.

We hope that Tyler does indeed continue to grow some new blood and new white cells. He got transfusions today and the last two days before that, so I am hoping that he can have a day off tomorrow. There are so many extra vitals checks with transfusions that it fills up the day a bit. With tomorrow being Sunday and Tyler (hopefully being filled up with blood) off from transfusions, we are hoping to watch the Superbowl in peace and quiet.

He's a New Man

After the transplant was done, you can see that Tyler looks much the same as he did before. We took him home to continue this ride from here. We have lab appointments only for the next two days, so we will be chilling out at home on Wednesday and Thursday.

His nausea got better after getting more medicine at the clinic, so I am hopeful that we will be able to keep things under control and allow him to eat a little bit more.

Size Doesn't Matter

After processing all of Scott's marrow, the bag of stem cells was significantly smaller. It turned out that 2.5 liters of marrow really only equals 176 milliliters of stem cells. This bag of healing power was infused over about an hour. By the way, this picture was taken right at the beginning of the infusion!

After all of the steps we had to take to get here, the actual transplant was pretty low key. It was just like getting a blood transfusion, which Tyler has had to do many times already.

The picture on the right shows the stem cells going into Tyler's Hickman line. You can see that he has two lines going directly into his veins. The tubing for any medications or transfusions are connected to the blue claves and then the liquid is fed through via a pump or syringe.

Boiling It Down

The marrow from Scott was taken to SCCA, where a specialized nurse ran it through the Apheresis machine to separate out the stem cells from the rest of the stuff they collected. You can see the 2.5 liters that they collected from Scott hanging in the big bags on the right side. There is actually a second bag hanging behind the one that you see.

Of the bags hanging up on top, the one on the right is the stem cells that had been filtered out when we went to see her. The one in the center is probably the "other stuff" that was being filtered out. Scott had the marrow harvested from his pelvic bone, which is a surgical procedure (with lots of sedation). Donors for other transplants that have the stem cells collected from the donor's peripheral blood would actually be hooked up to this machine for the harvesting. It's more like donating blood at your local blood bank.

Scott Bled-soe Much!

Scott's marrow harvest went well this morning, although he is quite sore now. They harvested 2 liters of marrow from him, so they were quite pleased with the collection volume. We talked to Kate a few times today and she told us that, although he is sore, it is possible he may get to go home this evening.

Tyler's infusion has been delayed by at least an hour as they are processing the marrow right now. They are using an apheresis machine to separate the stem cells from the rest of the stuff they collected. They tell us that it will take about 45 more minutes before the stem cell bag is ready to go. I've got a picture of them processing Scott's bag of marrow, but will have to post the picture from home.

Tyler has been queasy since finishing his radiation yesterday, so we're trying to get him more anti-nausea medication and then allow him to rest while we wait. We also are awaiting blood test results to see if he needs a platelet transfusion today. We hope not, but the numbers will be in soon.

Transplant Day!!!!
Day 0

Transplant Day!!!

Tomorrow (Tuesday) is transplant day! Scott (Donor Dad) is scheduled to check into UWMC at 5:30 am for marrow harvest, and then Tyler will check in at SCCA's outpatient clinic at 2:00 pm for marrow infusion. Afterwards, we take Tyler home and hope that the marrow takes hold and goes to work making new healthy blood.

We would appreciate all prayers to be said for both Scott and Tyler, and for the blessing of wise and compassionate care from the doctors and nurses around them both.

After the transplant, we begin the waiting period. Waiting for Engraftment is a 2-3 week period punctuated by frequent blood tests. The goal of this phase is to get Tyler's immune system to stay asleep while Scott's marrow travels to Tyler's bone marrow bed and begins to make new blood cells.

As the new blood begins to pick up, Tyler's body should begin to repair itself. He's got some recurrence of the mucositis, but we hope to keep it more under control with pain meds more often. I'm also hoping that it doesn't get as bad this time, but for now he is eating and drinking more carefully and living with more pain than normal.

Transplant -1 and counting...

Pre-Transplant Chemo Done

Tyler finished his 5th dose of Fludarabine today and continues to be doing well with the chemo. His throat has thickened a little bit, but any pain he has is manageable so far. I hope that it does not get much worse for him.

Tomorrow morning (at 7am), he gets his TBI at UWMC. They are giving him a very small dose of radiation, so we hope that it will not add much to his side effects. His hair has actually started to grow back in (after about 2 months as a bald man), so I am curious to see if it falls out again or continues to grow.

Transplant -2 and counting...

Restful Day

We had labs and chemo today at SCCA, but were home by noon. And that included a 2 hour wait for a room for the chemo. It was nice to have such a quick day there and get to spend time at home for the afternoon and evening.

Tyler is getting some mouth and throat soreness from either the chemo or the radiolabeled antibody, but hasn't been too impeded yet. We're mostly just being a little bit more careful about the food that he is eating. If it gets worse, we'll probably have to start up the pain meds again.

Tomorrow is Tyler's final day of chemo, and it is another quick day. Monday will be his Total Body Irradiation (TBI) at UWMC and then a few final appointments at SCCA. We'll have Monday evening and Tuesday morning at home before the transplant. Tyler's dad will check into UWMC very early on Tuesday morning to get his marrow drawn out. The doctors will do some magic to prepare the marrow and then infuse the marrow into Tyler on Tuesday afternoon.

Transplant -3 and counting...

2 Marathons Run

Tyler and I have just completed 2 marathon days at SCCA. On Wednesday and Thursday, they gave him two chemo treatments each day, which meant we arrived at SCCA at 7:30am for a quick lab and then headed up to their infusion suites to begin the day. We left between 9:30 and 10pm both days, so we had long days.

Most of the day was hydration and side effect management for a drug called Cytoxan. Tyler only has to get that drug these two days pre-transplant, but will get a 3rd (and larger dose) a few days after transplant. For the transplant protocol he is on, Tyler had to get 4 hours of hydration before they could even start giving him the drug. That's because this particular drug can cause your damage to your bladder. Tyler got so hydrated that he ended up having to urinate (or "void" according to the medical staff) every 60-90 minutes. That kept the chemo from settling in his bladder and causing trouble.

His other chemo was called Fludarabine (or "Florida Bean" as we like to call it). He gets it daily Wednesday through Sunday, but it is a quick one and takes less preparation.

Tyler did FANTASTIC both days! No nausea during the treatments and tons of eating both days. I sincerely hope that this continues through the transplant day next week. After almost a week of isolation, Tyler and I are both thriving on the chance to be together again, so we just spent the days keeping company and enjoying the hours we could be together. Everything is easier on us both if we can be together and strengthen each other.

With the treatments, his blood production is beginning to fall off. We expect that he will get several transfusions to tide him over until his dad's marrow takes hold and begins to make new blood for Tyler (likely about 1 month from now). We begin that today, with 2 units of red blood cells scheduled.

Transplant -4 and counting!

Still Glowing

My darling husband was measured this morning, but he must have still been glowing with radioactivity. His radiation level was down to 12.1 mR/hr, so we are hopeful that he might get to come home tomorrow.

The nuclear medicine specialist tells us that we can't do anything at all to hurry along the process, but I keep hoping that something will work. Tyler and I are both looking forward to spending more time together. We've only spent a few hours per day in each other's company, and we are separated by most of the room to protect me from the radiation.

Tyler's dad (his marrow donor) had an appointment today to bank some of his blood in preparation for the procedures next week.

We hope that Tyler is able to spend tomorrow night at home, as he begins his conditioning chemo on Wednesday. He'll have 5 days of chemo, followed by Total Body Irradiation next Monday, and a transplant next Tuesday. Wow! After months of delays and complications, time is now speeding towards this transplant. We are certainly ready to begin the recovery phase!

Transplant -8 days and counting...

T-y-l-e-r M-o-u-s-e

Tyler had his final blood test today and proved that he was not a mouse (or something like that)... Actually, Tyler had a HAMA blood test today to check for "human anti-mouse antibodies". The radioactive antibody that they will be giving Tyler actually comes from the white blood cells of a mouse, so they need to make sure that his body has not formed any antibodies (HAMA) against his potential treatment.

Tomorrow he gets his therapeutic dose. It will be another 5 hour infusion, following which Tyler will stay in the isolation room at UWMC for several days as his body processes the radiation it has received. We don't know exactly how long Tyler will have to stay there, as it will depend on how fast his body processes and eliminates the internal radiation. We expect him to be in the hospital at least through the weekend.

Conditioning Treatments

This week's schedule is an important one for us. Tyler has some standard appointments early in the week (we'll see our nurse and nutritionist and get some blood drawn), but the big stuff starts on Thursday. That is the day that he becomes the Bubble Boy. He's scheduled to receive his therapeutic dose of the radiolabeled antibody at UW, as he begins his isolation.

The therapeutic dose is the amount of medicine needed to treat the disease, so this is the first (and most important) step of Tyler's transplant conditioning. The goal of the conditioning is to prepare Tyler's body to accept the new marrow. This particular treatment injects Tyler with radioactive antibodies that seek out the cancerous cells and kill them off from the inside. As we saw in the Gamma scans, the radiation from the test dose moved into Tyler's marrow, his spleen, and his liver. These are all blood heavy areas of the body, so you can imagine how the full dose will be attacking the cancerous cells in his blood to kill the disease.

Tyler will be measured for the amount of radiation that he is emitting and we will be told how close we can get to him. He will be emitting gamma rays, so there is danger if we get to close to him. For that reason, the nursing staff will limit their visits to him.

In addition, anything that Tyler touches will become radioactive. So, anything that goes into the room with him will stay there with him for the entire time. Any food that he orders and doesn't eat will stay there with him for the entire time. Ideally, we'll throw away most of what goes into the room with him, but for the stuff that we want back... The UW will monitor it for radioactivity and return it to us at a later date, usually about 90 days later.

We plan to have Tyler take a computer in, so that he can read e-mails if he is feeling well enough. Other than that, he'll be spending a quiet weekend at UWMC. Our hope is that the side effects will be kept as small as possible, although we are worried about a recurrence of the mucositis.

Day -16 until transplant