Stubborn Little Suckers!

Tyler had just begun his first day at his old job, in preparation to return to work in January, when he got a call from Dr McGee.  The doctor told Tyler that he needed to come in for an appointment the following day to talk about a recent lab test.  Tyler called back to their office a few times trying to get more information, but no one could tell him anything futher.

Let me just step aside from my story for a minute to share a little fact that you could probably figure out.  It was extremely difficult to wait for 24 hours, wondering what the new information would be?  It ruined Tyler's first day with his work crew and our evening, as we worried about what exactly the bad news would be.  If you are a doctor or know a doctor, please tell them that bad news over the phone is infinitely better than bad news after a 24 hour wait.

After sharing our thoughts on that subject with our own doctor, we discovered that he was concerned about Tyler's latest BCR-ABL test results.  They showed a tiny bit of leukemia cells floating around in Tyler's system.  We had actually seen a test result from October that showed the same amount, but Dr McGee had indicated that a subsequent test showed no signs of leukemia so the October test was probably a fluke.

The amount of Leukemia shown as a ratio on this test was .02, which isn't uncommon for post transplant patients. In fact this ratio is in a range that shows that the chance of relapse is very unlikely. We want the ratio to be 0 however (negative), so we have discussed the possibility of another procedure. The goal is 100% remission.  On December 3rd at Puget Sound Cancer Care the test came back 0 (neg), and the same test done again on December 6th at SCCA came back as .02 again. The range for "very unlikely to relapse" is 0-0.10.

Dr McGee is referring Tyler back to SCCA for testing and possible treatment.  Most likely, Tyler would get a Donor Lymphomcyte Infusion.  This is like a booster shot of white blood cells from his father, that should stimulate the marrow to attack the leukemia cells that are floating around in there.  The goal of this treatment is to get Tyler back into full remission, but would likely cause a recurrence and possibly an increase in Tyler's Graft vs Host (GVHD) symptoms, but would also increase the Graft vs. Leukemia effect (beneficial). I know this all sounds very complicated, but we are working through this and finding out about the procedure.

Tyler would NOT have to endure the chemotherapy and radiation again with this treatment though.  It would be very similar to getting a blood transfusion, although his Dad's blood would be collected and boiled down to just the white blood cell part.

We have not yet committed to this treatment, but expect to learn more about it during Tyler's one year follow up appointment in a month.

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

Back to Where it Began

When Tyler had his checkup with Dr. McGee last week, he mentioned that he was having some mouth soreness. They called SCCA, who requested some photos of Tyler's mouth. It appears that he is finally showing a few more signs of Graft-vs-Host Disease (GVHD) which is a mixed blessing for us. Some GVHD reduces the risk of a leukemia relapse, but it also carries a risk of damage to his organs (if left unchecked).

The end result is that we are headed back to SCCA to meet with their long term follow up team on Tuesday. Hopefully this is just a one time appointment, but we'll likely learn more when we get down there.

Other than the mouth sores, Tyler continues to thrive. He is building up his strength and relearning skills he had lost (like how to fill the dishwasher).

Fiesta in Chelan

My side of the family held a week long reunion at Lake Chelan, thanks to my grandparents' generosity. I wish I could have spent more time with my family, but I thoroughly enjoyed every minute that I could steal away!

One family brought mustaches for us to wear during Mexican Fiesta night and Tyler and I are proudly modeling ours in the photo. I'm thinking we should both grow real mustaches after seeing how dashing we look with our taped on version. Actually, you can't see how much hair Tyler has grown over the past few months, but he is looking pretty sharp again.

There were 4 babies born into our family in the last year and it was a beautiful thing to get to see them becoming more like little kids and less like little babies. All of the kids (including the older Mia, Abbie, and James) inject so much life into family gatherings... I hadn't realized how boring I had gotten as an adult until I got to start playing with kids again.

Several months ago I posted a picture of me feeding my cousin's daughter, Audrie. You can see the original photo here.

Audrie today looks like this:



Isn't she adorable?? She was a charming little girl, filled with smiles! I think she could steal Tyler away from me, if she was just a year or two older!

As you can see from the lack of posts, life is incredibly good for us these days! Tyler is starting to do more exercise without his foot brace and notices increased movement in his foot. The photosensitivity in his eyes is much improved, so he finds it easier to be outside on sunny days again. He looks FANTASTIC and we are just so very thankful that we have come through this journey with his health coming back. Many thanks for traveling this road with us!!

6 Months Out and Going Strong!!

Today is the 6 month anniversary of Tyler's transplant and I am thrilled to report that he is still doing well. He has some mild Graft vs Host Disease (GVHD), mostly affecting his eyes, but is improving in strength and health otherwise.

Thanks so everyone who has helped us travel this path! We're excited to see that our "infant" Tyler is making such amazing progress. In fact... He doesn't have to see the oncologist for 3 weeks (our longest break in a long, long time)!

We hope that you are surviving this crazy heat wave!

The Eyes Have It

Tyler has been struggling a bit over this weekend because his eyes have been acting up. It really started getting bad on Friday and increased over the weekend. Tyler actually cancelled several of his weekend activities because his eyes were hurting and he didn't want to make them worse.

His right eye was even more red than normal and seemed to be oozing a little bit on Saturday. On Sunday and Monday, his eyes actually crusted shut as he slept overnight and continued to ooze all day long. We were worried because he has had eye sensitivity from the lack of tears (which is most likely mild Graft vs Host Disease) and this new symptom seemed to coincide with a new reduction in his tacrolimus (the immunosuppressant drug). He's been reducing one of his two daily doses every couple of weeks or so. He is on .5 mg in the morning and evening this week, then .5 mg in the morning and 0 in the evening next week, and then he is DONE!!! This means we are rapidly approaching our important 6 month mark.

If Tyler can get completely off of the immunosuppressant, he is able to increase the number of activities that he can participate in. He can go swimming again, have plants in the home, go golfing, and attend sporting events again. He still can't do any gardening or pet exotic animals, but it is exciting that he is able to take the next step back towards health.

We called the doctor's office first thing on Monday morning and they prescribed antibiotic eye drops, which seem to be helping. We see Dr McGee on Wednesday afternoon and will hopefully get more information then.

S.W.A.T. Team

Hello everyone!

I know its been a while now since our last post so I'm here to bring us up to date. My health has been good for the most part, except for some lingering dryness in my eyes, which is somewhat worrisome since it is a sign of GVHD. So far I have been using some prescription eyedrops to alleviate the discomfort, but it doesn't seem to be improving. Everything else has been great! My energy is still good, my appetite strong, and my blood counts have been great! I have no other signs of GVHD, so we will keep a close watch on my eye situation for now.

This last Saturday we had something wonderful happen! My longtime carpool buddy, David Lentz from Children's Hospital, was able to coordinate a work party from Children's to come up to our place and take care of some yard work and other outside issues that were definitely in need of some TLC! They cleaned our roof, set stepping stones, weeded the entire yard, cleared back blackberry bushes, pressure washed, cleaned our windows, manicured the lawn, and even put some new plants in. Even David's daughter, Amanda, chipped in blowing off the sidewalks and planting. Our yard looks amazing now and we are so thankful for their hard work and how much they were able to do! Hopefully we will be able to keep it looking so wonderful now.

I have been to two Sounders games now and they have a win and a surprise......."tie" ahhhh the dreaded tie! They have way too many of those for my liking and hopefully they will turn some of those into wins the rest of the way.

Summertime has been good so far and I am looking forward to all the exciting days ahead! I hope everyone is doing well and living every day to the fullest!

Take care...........Tyler

Test Results and Health Update

Tyler and I realized that we haven't posted any of his recent test results. They are looking really good, so we have just been filing them away. But, in case you are a numbers geek like we are, here are the results from June 9th.

WBC: 5.7 (normal 4.8-10.8)
HCT: 32.2 (normal 40-50)
PLT: 103 (normal 150-400)

Dr. McGee has been very pleased with Tyler's continued boringness, so we hope to continue that. We wonder about some redness and dryness that he has been experiencing in his eyes, but this seems to be very mild (if it is indeed GVHD). Hopefully he does not experience any further signs and does not have to slow down his taper of the tacrolimus (immunosuppressant).

On the upside, Tyler is feeling GOOD! He's slowly resuming normal activities and I am so very thankful to see him thriving again. Thanks for continuing to walk this journey with us.

Day 18 - Happy Valentines Day!

Tyler's blood test results were something to love today!

WBC: 3.68
HCT: 31%
PLT: 13

We hope that his platelet level continues to stay above 10 tomorrow, so that we don't have to stay for a platelet transfusion.

It was nice to have such a quick and easy day at SCCA. We went in for a blood draw and didn't have to wait at all -- there were no others there at the same time. Then we went up to the 6th floor to get the results of the test. The charge nurse said that we could go. Talk about an easy day at the doctor's office.

On the down side, we think Tyler is starting to show some signs of GVHD. We hope that it doesn't get much worse, as it makes his stomach feel unwell. Eating is enough of a challenge, but we could use all of the relief possible from eating related challenges.

We hope that each of you got to spend time with your loved ones today.

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.