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.
Wednesday, December 16, 2009
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.
Friday, December 4, 2009
Please help us save some lives next week. As a blood donor with Puget Sound Blood Center, you can give the precious gift of life this holiday season. Your blood donation brings much needed support to patients in our hospitals and the need for blood in our community is ongoing.
Our "O negative " blood type is at a CRITICAL LEVEL...
The need for 0 NEG DONORS:
- “Only O negative blood can be used for all patients in an emergency.”
- “That is why blood donors, like you, play such a vital role in creating a safety net when tragedy strikes.”
-“That is why blood donors, like you, are needed to donate as often as they can give.”
-“Please help to ensure the local supply of blood is available by donating blood as often as you can.”
-Why not start today? Imagine saving a life.
When: Tuesday, December 8th
Where: WSIPC (Everett, WA) – Bus in parking lot
When: 9:00 am – 12:00 pm
To sign up on-line please click on the following link: http://www.psbc.org/programs/drive.asp?URL=1009
For information please contact Don Denny at (425) 349-6600 ext. 6453 or email at email@example.com or contact Hal Woods at (425) 349-6600 ext. 6451 or email at firstname.lastname@example.org.
For questions regarding donor eligibility, please contact the Clinical Program at 1-800-DONATE-1, Ext 2543 or email@example.com
Thank you in advance for saving lives!
Tuesday, November 10, 2009
The Gap, Inc. is offering their Give and Get special again this month between Nov 12th and 15th. You get 30% off your purchase at the Gap, Banana Republic, or Old Navy AND they will give 5% of your purchase to the Leukemia and Lymphoma Society. That's a win/win in my book!
Go to the website below for the coupon to use in store:
Please help us maximize this gift by passing this message along to everyone you know!
Today, Kareen Abdul-Jabbar announced that he has been diagnosed with CML. As I read the article on CNN, I was very pleased to see that he is working with Novartis (manufacturer of Gleevec and Tasigna) to launch an educational program focused on getting treatment and following your treatment plan. We had also learned that many cancer patients do not take their medication as prescribed, which leads to lower success in treating the disease.
While I'm sad for Mr. Abdul-Jabbar to have to face this diagnosis, I'm pleased to see that he has chosed to get out there educating others about Leukemia and I look forward to seeing the good works he is able to accomplish.
Tuesday, November 3, 2009
If you have ever wondered how a wonder drug like Gleevec gets developed, here is more ifnormation from one of the oncologists behind that drug. This article made me think about the trial that Hans is entering for Ariad and the impact it may have on the future of CML treatment.
November 3, 2009
A Conversation With Brian J. Druker, M.D.
Researcher Behind the Drug Gleevec
By CLAUDIA DREIFUS
Dr. Brian J. Druker, 54, an oncologist at Oregon Health and Sciences University and a Howard Hughes Medical Investigator, is one of three winners this year of the Lasker-DeBakey Clinical Medical Research Award, often called the “American Nobel Prize.” Dr. Druker shared the honor with Nicholas B. Lydon, a former researcher for Novartis, and Charles L. Sawyers of Memorial Sloan-Kettering Cancer Center, “for the development of molecularly targeted treatments for chronic myeloid leukemia, converting a fatal cancer into a manageable chronic condition.” Here is an edited version of a conversation that took place last month in New York:
Q. WHAT WAS LIFE LIKE FOR PEOPLE WITH CHRONIC MYELOID LEUKEMIA, OR C.M.L., PRIOR TO YOUR RESEARCH?
A. Life was pretty miserable. If you were over 40, the main therapy was interferon, which prolonged life for maybe a year in perhaps 20 to 30 percent of patients. Interferon made the patients feel awful — like the worst flu. The only other hope was a bone-marrow transplant for younger patients. The problem there was that the death rate in the first year was 25 to 50 percent.
C.M.L. patients were always difficult to see because both of us knew that the clock was ticking and there was virtually nothing that we could do about it.
Q. It must have been depressing to be an oncologist under those circumstances.
A. When I started my training in the 1980s, you rarely cured people. You felt, “if I can give my patient extra time, I’ve been successful.” But I could see there was a transformation of cancer treatment on the horizon thanks to breakthroughs in biochemistry and genomics. I wanted to be part of that, which is why I was a physician-researcher.
The way I’d been trained, cancer was seen as something like a light switch that was stuck in an “on” position. You were given a baseball bat, which was chemotherapy, and told to knock the light out with the bat. I thought, “Why don’t we just try to figure out why the light is stuck on, then we can fix it without breaking everything.”
So I started my laboratory career studying the regulation of cell growth — what turns the switch on, what helps it shut down. And that’s how Gleevec is different from earlier chemotherapies, which basically poisoned every cell in the body in an attempt to kill the cancer. Gleevec turned off the light switch and only killed the cancer cells.
Q. How did the idea behind Gleevec first come up?
A. By the late 1980s, C.M.L., though rare, was a cancer that scientists knew a lot about. We knew, for instance that a chromosomal abnormality existed in every C.M.L. patient. We knew that this abnormality created an enzyme that caused the uncontrolled growth of cancer cells. If you put this enzyme into animals, they got leukemia.
So in 1988, Nick Lydon, who led a drug discovery group at a pharmaceutical company that eventually became Novartis, came to talk to me. He was interested in developing drugs to block a family of cellular enzymes implicated in several cancers. I said to him: “If you want to develop targeted chemotherapies, C.M.L. is the disease to study. We know the most about it — and, if we can figure out a way to block this enzyme, we can turn off the cancer switch.”
So in Nick’s lab at the pharmaceutical company, he began screening for agents that worked on C.M.L. He’d send me his best compounds. I found one, STI571, that was better than the others; it would kill every C.M.L. cell in a petri dish. By 1995, STI571 was a lead compound set for clinical development.
Q. So Gleevec was on its way?
A. Not quite. Gleevec was a completely different class of drugs than what was used against cancer. Most researchers thought it wouldn’t work. Then, in 1996, before we were about to go to trials, Nick’s company merged with another, and he left. Gleevec was now caught in the changeover. I lobbied with the new executives. After some ambivalence, they agreed to go forward with Phase 1 trials. I think they felt it wouldn’t work and they could get rid of us afterwards.
But during clinical trials we saw this miracle: Once the patients were up to effective doses, we got a 100 percent response rate.
Q. Had that ever happened before in a clinical trial?
A. No. Never. You’d see patients where interferon wasn’t working, and they’d been issued a death sentence. Suddenly, all their hopes for the future were restored, and, with minimal side effects! This was around 1999, and the Internet chat rooms were just beginning. Patients in the trials began talking to each other like they’d never done before. I’d see a patient, and I’d read about it on the Internet that night: “few side effects,” “100 percent response.” Patients would come to me and say, “My doctor has never heard of this drug.” I’d never written it up. I hadn’t presented the data. Their doctors thought I was a charlatan. For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing.
Now the drug company had to make another decision. They hadn’t made enough drugs for a large-scale Phase 2 trial. But patients knew about Gleevec, and many more wanted to be included in the trials. Through the Internet, they generated a petition that landed on the C.E.O.’s desk, asking for greater access. That’s how Phase 2 was rapidly expanded.
Q. YOUR FRIEND AVICE MEEHAN OF THE HOWARD HUGHES MEDICAL INSTITUTE SAYS THAT YOU HAVE THE MOST AMAZING PERSEVERANCE. IS THAT WHAT IT TOOK TO MAKE GLEEVEC HAPPEN?
A. I think I’m more perseverance than smarts. There’s a basketball player who says, “Hard work beats talent when talent doesn’t work hard.” Well, I work hard. I understood that this project was too good to give up on. My patients needed me to do something to help them. I did everything I could by getting them a drug I thought would work.
When the drug looked like it was finally going to be approved, I was interviewed by a reporter from People magazine, Alexandra Hardy. She asked, “Who are your good friends?” I said: “I don’t have any. I work, eat, sleep, go to the gym.” She said: “You’re pathetic. You’ve got no balance in your life.”
Well, there is now. Alexandra and I got married, and we have three wonderful children.
Q. Gleevec was ultimately proved effective against two cancers, right?
A. Ten. It’s now F.D.A.-approved for 10. Gleevec went to market for a small disease, 50,000 patients, and it later got tested for other things. It’s now used by 200,000 patients worldwide.
Q. Do you see any of that?
A. I don’t see a penny, though that never was an issue for me. When I obtained the compound, it was already patented. I wasn’t going to get to test it if I tried to put my mark on it. I wanted to work on it because I thought it was going to be the way to treat C.M.L.
You know, my patients were people who’d been told “to get their affairs in order” because they were going die soon. And now some of them play with grandchildren they’d thought they’d never live to see. That’s worth more than money.
Monday, November 2, 2009
For those of you who are also following the story of our friend Hans, he is beginning a clinical trial for a new drug created by Ariad. I believe this is a Phase 1 trial, meaning it is at the very early stages of testing the drug, but it has shown a very good response for CML patients who are resistant to Gleevec and Sprycel. Even more importantly, it is one of the first drugs to have an impact on the T315I mutation of leukemia. Hans's most recent mutation testing showed that he has that mututation, so continuing with Gleevec or Sprycel doesn't really make sense.
He will have to travel to Portland for some of his treatment, but thankfully it is not further away.
Tyler and I would ask that our friends join us in praying for Hans to receive successful treatment. The trial certainly looks like a promising option, but a little extra help is always worthwhile!
Sunday, November 1, 2009
Tyler celebrated his 43rd birthday yesterday, although he insists it is the first of many. He's actually planning to celebrate his Dad's birthday (in honor of his donated marrow) and his transplant date as birthdays as well. I'm thinking that I might go broke with that many birthdays, but Tyler certainly deserves some fun this year.
Actually, he decided to spend his day golfing with his brother (a round of golf is an outstanding gift idea for Tyler!) and then we had a movie night. Tyler had chosen some classic movies to watch for his birthday, so we enjoyed The Way We Were (although a week early because it arrived before his birthday and he didn't want to wait), Fast Times at Ridgemont High, and Monty Python's Search for the Holy Grail.
Although we had to interrupt the movies for trick or treaters, we really enjoyed a chance to get back to one of our favorite things. One of our very first dates was a movie night, so we always enjoy a chance to relive that!
Wednesday, October 21, 2009
The following was written by my father Scott Bledsoe, on February 28, 2009....about one month after my bone marrow transplant. We have meant to put this in our blog for quite some time now, and after reading it for the first time today.......I really wish we would have posted it sooner!! But....better late than never!
Tuesday, October 13, 2009
Today, I had my second GVHD evaluation at SCCA. I arrived at SCCA this morning around 8am for a routine blood draw and another GVHD eval. After my blood draw, I sat upstairs in the floor 6 waiting area looking out at the amazing view of Lake Union and Seattle. I had about 45 minutes until my 9am appt. and I started thinking about where I was at about one year ago. I had just begun radiation treatment at the UW to try and get rid of the Leukemia in my spinal fluid. This was a 12 day treatment schedule with about a half-hour of radiation each day. Needless to say looking back now, this was effectively the beginning of an extremely demanding stretch of time. The biggest demands were in the physical changes that occurred during and following radiation treatment.
I began to develop mucositis on or around the 6th or 7th treatment.....at least I started noticing a change with my esophagus and my ability to swallow. Pain began to set in slowly at first.......and then about a week later around the end of treatments it was getting "very" painful. I was developing a lot of nausea at that time, and I started to become unable to eat solid food.
About 2 or 3 days after my treatment ended, the pain was so unbearable that I begged Mandy to take me to the hospital at around midnight. I was admitted to UW at that time, and was not discharged until about 7 weeks later!! This stretch of time was physically and mentally the "most" difficult period of time for me. I could not eat.....swallow pills, and upon finding out that the radiation didn't even work I was trying to figure out what I could possibly look at for positives. Things seemed extremely bleak, and the main reason I was able to forge on was my wife by my side. Now I have many people that I drew strength from during "all" of my recovery, but during this time specifically....... Mandy was my everything!...... and the main reason I was able to wake up each day and fight against this brutal disease. Seeing her by my side....constantly.....reminded me why I needed to beat this!
During this time my food was pumped in through my Hickman line into my bloodstream. My food was called TPN, and it was a 24 hour supply of liquid with nutrients. This for all intents and purposes is what I lived on during that time......the nurses, nutritionists, Mandy, my mom, etc.... all urged me on to eat other things but for me it was so difficult and I was not able to eat much of anything. This was the start of losing about 40+ pounds over 3.5 months, and I will never forget the intensity both physically and mentally!
Also during this time is when I developed a "foot neuropathy"...called Foot Drop. About my 3rd night at UW, I fell asleep in an awkward position on a morphine drip, and woke up about 6 hours later in a lot of pain! I also noticed I could not feel my left foot. As I began to search through the fogginess of discovery.......I noticed that I could not lift my foot upwards. I also noticed that my foot was numb on top, and the numbness ran all the way up the outside of my left leg to my calf. Walking became difficult at that time and a physical therapist was able to get me a brace which allowed my foot to lift automatically for me. It held my foot at a 90 degree angle with my shin, and every step the brace allowed the front of my foot to "lift".
I could go on..........but the memories seem endless.........anyways it was about time to concentrate again on today and my GVHD evaluation. I was able to see the Long Term Follow Up specialists at SCCA today around 9am, and they inspected my skin, eyes, mouth, mobility, and we all came to the conclusion that my GVHD symptoms have not progressed and had in fact improved slightly. However, this GVHD is something that even if you have just mild symptoms.....you need to pay extremely close attention to any changes. I have received my instructions for things to watch for, and will be paying very close attention to any changes specifically with my eyes, mouth, and skin. The doctor had a good analogy for me to think about. GVHD is like a burning house.........if the fire is only in the fireplace, its all good........but if the fire is spitting out cinders, its time to call for action! GVHD treatment can prevent damage, but GVHD damage cannot be repaired. An example is your eyes ability to produce "tearing". If you lose that ability due to GVHD damage, it is unfixable..........and your eyes will be dry and uncomfortable always. With all of this in mind.........I left SCCA very happy that my GVHD had not progressed, but very thoughtful about "all" I need to pay very close attention to.
I hope all of those reading this find themselves doing well, forging on, and are looking forward to all of the positive things that surround each of us every single day! I care about all of you and hope things are going well!
Thursday, October 8, 2009
Today, I heard the very sad news that another friend of mine has been diagnosed with a blood cancer. Each time I have heard this kind of news, my heart breaks a little bit more. It seems that the speed of this news is increasing, which makes me nervous. I am thinking more and more about my environment and whether or not I have increased my risks through choices there....
In any case, I ask you to join me in praying for my friend, a truly beautiful woman, as she and her family learn to accept this difficult news and begin her treatment.
Wednesday, October 7, 2009
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!
Tuesday, October 6, 2009
Does your work have something similar? If so, hopefully you get the opportunity to donate blood yourself! If not, I encourage you to find a blood drive near you. The life you save might be a friend's!
Monday, October 5, 2009
If you are in the Everett area on Tuesday, October 6th, please consider donating blood at my office! We have a blood drive that still needs a few more donations between the hours of 9 and noon. To reserve a spot for yourself, please click here or give me a call.
Thanks for your willingness to help!
Saturday, October 3, 2009
Hey everyone!! I want to thank everyone so much for donations for this years walk, and thank all of those able to join us for the walk itself! I know many of you werent able to make it for various reasons, and we want you to know we understand of course. For all of those praying, and sending positive thoughts for my continued recovery from this disease......thank you! My recovery has been slowed slightly with the onset of some GVHD symptoms, but we will be dealing with those symptoms and treating them accordingly as time goes on. I wont have an update on that until probably after Oct. 13th.......my next appt. with SCCA.
I am hoping to have enough strength, stamina,and knowledge that working around soils, plants, etc...will be safe on a daily basis to allow me to go back to work sometime in either December or January. I will know more hopefully by early November.
Right now I fill my time with trying to stay as active as possible. Last night I even went and attempted to play soccer. I played goalkeeper, and my agility was pretty lame......but it was great to be out there and I'm glad I did it! Hopefully my teammates will bear with me as I regain my strength in my left leg (calf specifically). Im hoping I can be somewhere around 75% of my old self by next spring. I think I will need to do a lot of running, walking to get to that point. The bottom line for me was just being out there, and seeing good friends again!
Mandy mentioned my golf score of 74, which was by far my best score relative to par ever (+3), my previous best was (+9), but she didnt mention my score at Alta Lake near Chelan where I shot a 101 (+29) or my average score this year which is more around (+16-18). Golf is an extremely humbling game, but the humility is worth it because of the challenge! There is something very special about being outside, walking with friends, razzin each other, and hitting that stupid ball that makes the difficult parts of the game so worthwhile.
Once again, thank you to everyone who contributed to Team Firefly this year. We really appreciate it!!
Monday, September 21, 2009
Im pretty lame when it comes to asking others for donations, etc..., but I would like to send out one last reminder for those that havn't already donated to Light the Night this year. More specifically to our Team Firefly. I believe there is a link here on this website where you can make a donation, and we are hoping to get closer to our goal for this year. It is very tough economically for everyone, but we still need to ask. If you cant donate, and would like to join us next saturday at Greenlake that would also be appreciated. We understand for all that cant do either. For those that do want to walk this year, we are all wearing white tops so we can look like a "team". The walk usually starts around 7pm, but there will be other stuff going on before that. I think things start around 4-5pm.
This cause (curing cancer/blood disorders) is obviously very important to me, considering I wouldnt be here if it wasnt for the research and advancements done over the years with donations to this cause! Help us save some more lives, not just for me or for today......but for all of those that will need it in the future.
Friday, September 18, 2009
Tyler survived a marathon doctor's appointment at SCCA, but overall it was a good thing. They confirmed that he does have GVHD, but are waiting on the results of a pulmonary (lung) function test he took in the afternoon. I ended up being sick on Tuesday and couldn't join Tyler at his appointments, but I hear he tracked down many of the staff members that we interacted with over the last year. The people were definitely the very BEST part of our time at SCCA!
Tyler's mom was also in town for the day, so she was able to drive him home after his appointments and catch up the latest and greatest. She made me realize that some of the improvements that I take for granted now should be shared with those of you who have joined us on this journey.
- Tyler is now walking without his brace about 90% of the time. He was getting stronger with the physical therapy, but decided in August(?) to try going without the brace more and more often. He's now golfing without and credits his best score ever (a 74!) with the ability to rotate his ankle again!
- He got his 1st Post Transplant hair cut and is looking really good (especially on the days when he shaves)! I promise to post a picture soon.
- He's able to eat anything he wants, as the end of his immunosuppressant drugs (Tacrolimus) means the end of a restricted diet! Bring on the blue cheese!
- He still isn't back to work, but considers it occasionally. He's been working to build up his strength and endurance so that he can resume his job as soon as possible. There are some concerns that the nature of his job (groundskeeping) may pose risks beyond just the physical toll, so we're doing what we can to consider all work options.
Sunday, September 13, 2009
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).
Saturday, September 5, 2009
We were quite saddened to see that a fellow transplant patient that we followed via his mother's blog just passed away from complications with his transplant. It really brings home to me how different our experience could have been. Nick was in the hospital for about 60 days with significant breathing difficulties and signs of leukemia in his spinal fluid. We are praying for comfort for his loved ones as they grieve for him.
While our road to the transplant was incredibly painful and tested our strength significantly, the post transplant challenges have been mild in comparison. I was incredibly nervous that no search was made to find a perfect match for Tyler, but they kept insisting that his protocol (the specific transplant instructions) wouldn't need a perfect match. It appears our doctors were right!
In addition, I wonder if they have found a transplant method that might work well for others with fewer post transplant complications. I would be interested to find out the results of the study and whether or not the other patients had similar results. We did see one lady on the same protocol while in UW Hospital before Christmas, but I don't really know much else about her progress. Also, we don't really know anything about the long term results of this transplant. Relapse is a risk for all transplant patients, but they were specifically testing whether or not the radiolabeled antibody injected before the transplant would decrease the risk of relapse.
Our friend, Hans, is doing well on Sprycel. All of his blood stats seem to be lower on Sprycel (as compared to Gleevec), but I actually wonder if this might be a good thing. If the Sprycel was having an effect on his blood making ability, wouldn't it make sense that all of his blood making abilities would be affected? If you wouldn't mind saying a prayer or two for him, we would appreciate it. We are hoping that he will achieve remission on this drug and be able to stay in maintenance mode for many years.
Sunday, August 30, 2009
Tyler and I are again raising money for the Leukemia and Lymphoma Society through the Light the Night walk. This year's walk is scheduled for Saturday, September 26th and is certain to be a fabulous event again. This will be our 3rd year of participating and I am hoping to make it our best year yet!
If you would like to join our team and walk with us, please go to http://pages.lightthenight.org/wa/SeattleL09/TeamFirefly and click Join at the bottom.
If you would like to donate to our team, please click http://pages.lightthenight.org/wa/SeattleL09/mbledsoe_LTN
Thank you so much for your continued support!
Saturday, August 29, 2009
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!!
Friday, August 7, 2009
From the Sounders Blog:
The Sounders FC invites fans to take part in the Sounders FC Bone Marrow Drive. The Sounders FC have teamed up with defender Tyrone Marshall in an effort to support Marcia Williams’ battle with cancer. Marshall and some of his teammates will host the Sounders FC Bone Marrow Drive at Qwest Field on Aug. 18 from 4-7 p.m.
Marcia is the wife of Real Salt Lake’s Andy Williams, a close friend of Tyrone.
“I’ve known Marcia, Andy’s wife, since Miami in 2000/2001, so we have gone back awhile. It’s a tough feeling to know someone that close who is struggling with a life-threatening illness,” said Marshall.
Fans can help by attending the drive on August 18th and joining the National Bone Marrow Registry, a very quick and easy process.
“A lot of people think they are going to be stuck by a needle, however it is just a little swab in your mouth and it is easy. In addition to filling out some paperwork, the cheek swab won’t take more than two or three minutes. “
Patients are more likely to find a compatible donor within their own racial and ethnic background, which is why Puget Sound Blood Center is requesting a diverse group of donors. Currently the national registry for bone marrow is 75% Caucasian.
For information on Marcia’s fight visit soccerunitesutah.com and for information on joining the National Bone Marrow Registry visit www.psbc.org.
Parking will be complimentary in the north parking lot.
Thursday, August 6, 2009
Monday, August 3, 2009
Strike Out Leukemia Night
Angels vs. Mariners
Wednesday, September 2, 2009 - 3:40 p.m.
Enjoy a summer afternoon at Safeco Field while supporting a great cause! Catch the Mariners at a discounted price, exclusive to you through this online offer. A portion of the proceeds from tickets purchased through this special offer will benefit The Leukemia & Lymphoma Society. Tickets can be purchased online and credited towards our Team Firefly fundraising for Light the Night!
DEADLINE TO PURCHASE: Monday, August 31 at 5:00 p.m.
• Wednesday, September 2 vs. Los Angeles Angels - 3:40 p.m.
• $15 View Reserved (normally $20)
• $32 Field Level Seating (normally $40)
• $7 from each ticket sold benefits The Leukemia & Lymphoma Society!
***Special Note for our Friends and Family***
In order to credit Team Firefly's fundraising efforts, you must send an email with the subject: MARINERS NIGHT to firstname.lastname@example.org with the following information:
1. Ticket purchaser name
2. Number of tickets purchased
3. Participant name you want credited (Mandy Bledsoe or your name if you are participating)
4. Light the Night: Team Firefly
Sunday, August 2, 2009
At his last doctor's visit, Tyler learned about a great program sponsored by Novartis, the manufacturer of both Gleevec and Tasigna. Apparently the company will actually cover some of the copay's for the next few months. While the copay is only $35 per month (thank goodness for medical insurance!!), we are still happy to have someone else pick up the bill for a few months.
Many of our readers may know someone else touched by blood cancers. If your friends/family are taking Gleevec or Tasigna, you might have them look into this copay assistance program too.
Tuesday, July 28, 2009
Leukemia survivor, Lance Bigelow, is someone who knows first-hand the importance of Gap's Give & Get program benefiting The Leukemia & Lymphoma Society (LLS). He participated in the spring campaign. Lance and his family knew that taking advantage of the Give & Get program's 30% discount, they would also be contributing to LLS' blood cancer research efforts, research that helps kids like Lance -- research that fights the number one cancer among children.
Thanks to the efforts of families like the Bigelows, the spring campaign raised $600,000 for research to find a cure.
By participating in our summer campaign you can help blood cancer patients live longer, better lives --- and look good doing it!
Just visit any Gap, Inc. store from July 30th to August 2nd to take advantage of the 30% discount offer. Please note that this offer is good from July 30th through August 2nd only! The Gap Give & Get coupon is good for purchases at any Gap, Inc. store, including Gap, Gap Outlet, Banana Republic, Banana Republic Factory Stores and Old Navy. The coupon is for in-store purchases only and is good in both the United States and Canada.
Remember, when you download a coupon for discounted clothes from this site you're helping The Leukemia & Lymphoma Society fight the number one cancer among children. Send this page to your friends and family and help our cause even more!
For more info: http://www.leukemia-lymphoma.org//all_page.adp?item_id=552506
Lance's Story: http://community.lls.org/blogs/atlls/2009/07/27/licking-leukemia-with-lls-and-gap
Coupon (English): http://www.gapinc.com/giveandget/lls/
Monday, July 27, 2009
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!
Thursday, July 16, 2009
From the Be the Match website:
Thanks to the amazing response of people like you, the Be The Match® Marrowthon, June 8 – 22, 2009, was a success. With the help of our supporters, we reached many thousands of people with the message about the need for bone marrow donors and financial contributions to make life-saving transplants possible.
Tens of thousands of people joined the marrow registry. And we’ve raised funds to add many more.
Thanks to all who joined, contributed financially, created their own marrowthons, helped spread the word and even ran on treadmills to raise funds. You are the ones who give patients hope.
The Be The Match Marrowthon is over, but it's not too late to get involved to save lives.
Even if you missed the deadline to register for free, you can still make a difference by volunteering as a donor today. Visit www.marrow.org for more information.
Tuesday, July 14, 2009
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.
Sunday, July 12, 2009
The Leukemia and Lymphoma Society hosted a kick off party on Thursday, June 9th for the Light the Night walk this fall. Tyler and I were pleased to be able to attend the party and the Mariner's game as part of that group. We were also pleased to run into several of Tyler's coworkers from Children's Hospital who were there with another walk team.
The kick off party included an inspirational talk by another blood cancer patient, named Ken Sheets, emphasizing the many important programs that the Leukemia and Lymphoma Society helps to fund. I was very moved by his descriptions of his own battle and his philosophy of being "Never2Old" to fight cancer, to embrace life, and to make a difference.
After the party, we found our seats for the ball game and prepared to watch the Mariners against the Texas Rangers. My cousin, Bethanie, and two of her lovely kids joined us for the game part of the evening. I was pleased that Tyler was able to bring his good luck to the Mariners (and not just the Sounders), and they won 3-1 with a homerun in the bottom of the 8th inning. It was an outstanding pitcher's duel, made all the more exciting by the fact that Felix was also pitching for Tyler's fantasy team that day. :)
We would love to have you join us in supporting the Leukemia and Lymphoma Society this year. We will be walking around Greenlake on September 26th and are hoping to have friends and family around us to celebrate how far we have come in the last year. If you are interested in joining us, please go to http://pages.lightthenight.org/wa/SeattleL09/TeamFirefly and click "Join" at the bottom of the page.
Wednesday, July 8, 2009
Sunday, July 5, 2009
Our small Bledsoe contingent strayed away from the compound this weekend for some fun 4th of July relaxin. Mandy, my grandma and I made the trek up to Sequim to visit mom and John and enjoy the comforts of their hospitality. We've had wonderful food, games, golf, sun, and conversation. The day we arrived Mandy and I went to the nearby golf course to play 9 holes, and she caddied for me. I started off triple, double, double bogey and she had a conversation with me about my swing plane being off. The last 6 holes I played at a combined +3 (3 pars, 3 bogey's)......so Im thinking about hiring her permanently!
We've been able to relax for a couple days and get away.......it always feels good to get away for a little while. Last night we went to a friend of their's from church for a barbecue and we had beef brisket, spare ribs, chicken, brats, and oyster's on the half shell. I kindly passed up the opportunity to enjoy the oysters as Ive had a previous negative experience with oysters! I think John had about a dozen and really was trying hard to get me to try. It was a fun time as we had great food, croquet, badminton, and bocci ball. We ended the night teaching my grandma how to play Yahtzee and watching my mom school us with a 400+ point game which included 2 Yahtzee's.
On our way back home today so Mandy can get back to work and I can continue my recovery. I hope everyone is doing great this summer!
Friday, June 26, 2009
Monday, June 15, 2009
The Leukemia and Lymphoma Society is hosting a kick off for the Light the Night walk at the July 9th Mariners game. Registered walkers can get a free ticket to the game and take part in a pre-game celebration, including a free hot dog and soda.
Several friends and family have shared with us that they are planning to walk with us and help us in our efforts to raise money for the Leukemia and Lymphoma Society. Those that are already registered should have gotten this e-mail directly. If you have not registered yet, it is very easy to do so. To register, you can go to http://pages.lightthenight.org/wa/SeattleL09/TeamFirefly and scroll down to the bottom of the screen. There is a "Join" button that lets you sign up for our team.
By joining our team and raising funds for this important cause, you'll be making a real impact on the fight against cancer. On Walk night, you'll join us with other teams and individuals from all over our community in the culmination of our efforts to find cures. Walk night is a family-oriented evening in which participants carry illuminated balloons, raise awareness of blood cancers and come together as a caring community.
We urge you to join our team today and join in the celebration at the Mariners game on July 9th! It's just one of the many ways that we will be able to enjoy our efforts to raise money for the Leukemia and Lymphoma Society.
Sunday, June 14, 2009
Just over a year ago, Tyler and I purchased season tickets to the new Seattle Sounders team. With the need to protect Tyler's health, he hasn't been able to use his ticket. I'm thrilled to say that Tyler attended his first Sounders game this weekend. And, after watching the team tie several games and then lose the last game, Tyler's mere presence at the game was enough to inspire the Sounders towards victory. In addition, I was shocked to see that Tyler's presence was enough to keep the Sounders from getting yet another Red Card.
The biggest risk to Tyler's health is the sheer volume of people at the stadium. Since we can't control the environment in any way, we are unable to avoid sick people and bacteria. We evaluated the risks and did the best we could to mitigate them. We've gotten pretty good at carrying Antibacterial lotions, so we are constantly cleaning our hands.
And we kept Tyler away from people as much as we can. But... It was great fun to enjoy a Sounders game with Tyler. We've got great seats, which you can see in the picture below. The orange figure you see is our fearless goalie and an outstanding player, Kasey Keller. The yellow figure is the line judge, so you can ignore him.
Saturday, June 13, 2009
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.
Friday, June 12, 2009
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.
Sunday, May 31, 2009
For a few lucky individuals, there was another Tyler sighting on Saturday evening. After so many months of hibernation, we enjoy these new opportunities to see a few friends and family, so Tyler and I drove to the Museum of Glass in Tacoma to help celebrate at my cousin's wedding. While we are still trying to be careful about exposing Tyler to health dangers (like pets, bacteria, viruses, etc), it was very important to us to help welcome Heather into the family.
Aaron and Heather had a beautiful ceremony and we enjoyed the opportunity to wish them well. As they have been dating for seveal years, we have been able to get to know Heather a little bit and I can honestly say that she is lovely both inside and out! And Aaron is one of the good guys, so it was lovely to see them become husband and wife.
Tyler and I also enjoyed the opportunity to catch up with family members that he hasn't seen in months. So many people in our families have been praying for us and encouraging us, that it was good to be able to thank them. Plus... it is amazing to see Tyler looking so good these days! He's growing hair again and looking stronger every day.
Life is GOOD!!!
Sunday, May 24, 2009
As a sign of how much better he feels, Tyler is on a small road trip this weekend. He headed over the Sequim to spend the long weekend (with an extra day on each side) with his Mom and her husband, and just get away from home for a few days. I wasn't able to join them, as I had to work both Friday and Tuesday, but will take advantage of the opportunity to go visit my sister and baby niece.
Although it has been a few weeks since we last posted, life has been moving along well for both of us. I've been working full time, playing a little bit of soccer, and enjoying the sight of a happy husband. Tyler has been eating nonstop, knocking a few golf balls around, and getting stronger with increased activity and physical therapy.
Appointments with Dr. McGee have been good, as Tyler's blood counts continue to stay in normal ranges. Tyler is headed to the doctor about once a week initially, but will be dropping down after a month or so of good blood tests.
Tyler still is not showing signs of GVHD, and is continuing to decrease the amount of Tacrolimus that he takes each day. He's currently at 3.5mg per day, which is down from a regular dose of 5.0mg per day back in April. He actually was much higher when he was first released from his final hospital stay (in January), but the level of Tacrolimus in his blood was tested twice a week for the first 100 days and his dosing adjusted accordingly. I'm hopeful that he will continue to be strong and healthy as the drug is lowered further.
He is also continuing to take Tasigna, the leukemia attacker that he was on before the transplant. They estimate that Tyler will continue on this drug for at least 1 year to reduce the risk of a relapse. At the 1 year mark, they will let us know about continuing with the Tasigna or not. I kind of hope that he gets to stop that drug as well, but also don't want to risk a recurrence of the leukemia.
If things continue to go well, then Tyler may be able to resume his regular activities gradually between the 6 month to 1 year mark. We had purchased season tickets to the Sounders last spring, and Tyler has been unable to attend any of the games because of the risk of infection in large crowds and the fact that we stand for the entire game in most of the stadium. He's currently in training for the standing thing, but we are going to evaluate whether or not he can go to the June soccer games.
Saturday, May 23, 2009
We were invited to lunch with some other CML'ers just over a week ago. Sadly, 3 of the 7 people couldn't make it at the last minute due to illness. Happily, the other couple that made it to lunch was Hans and Cynthia! We met little Alex (their baby son) for the first time and got to catch up with some of our dearest friends at a favorite restaurant. We couldn't have asked for a better meeting!
They look fantastic and seem to be juggling the demands of a 2nd child as easily as they do everything else. I'm always amazed by how much they accomplish in their free moments! I'm much more inclined to sit and do nothing during my spare time. ;)
We spent a considerable amount of time with Hans and Cynthia while dating and it was fun to recapture some fo the good times that we have enjoyed with them over the last several years. I'm thinking that I can't let that many months go between visits with them!
Later that evening, Tyler came out to watch the Coed soccer team play an early game at Marymoor. I think every member of the Coed team mentioned to me how great it was to see Tyler there. I had to agree. I caught myself grinning like a fool every time I caught sight of Tyler on the sidelines.
In case we haven't said it enough, Tyler and I are both thankful for good times and great friends!!
Tuesday, May 12, 2009
My husband talked me into a date night last night. I can't believe that we are finally able to get back to normal things, like going out to dinner and a movie. We were so excited to get out and spend time with each other!
Now that he is past his 100 day mark, Tyler is feeling more comfortable being out in public. We still have to avoid large crowds and sick people in general, but we have more freedom to ge back into our regular life.
We also had our first appointment with Dr. McGee yesterday afternoon and it went extremely well. We have a great deal of confidence in the staff at Dr McGee's office, so we were happy to be under their care again. Tyler will be going in for weekly appointments initially, but we are hoping to taper off as time passes and he continues to be doing well.
No obvious signs of GVHD and Tyler continues to pack in the food, so he seems to be feeling good again!
I want to take some time to thank everyone including family, friends, and new friends from around the country! Your support has been so important to both Mandy and I, and we are forever grateful. At our last clinic I was reminded (even though Im aware) that we're less than halfway through this recovery. The doctor compared it to a 100M hurdle race and that I have just cleared the 4th hurdle (of 10). I too feel this way because of the difficulty transplant patients have with GVHD, and also the chances of relapse. We celebrated the 100 days but there are many milestones to reach over the next couple years.
I wont be able to work until early 2010, unless Im showing no signs of GVHD or other complications. Its very strange to be unable to work, go to crowded restaurants, go to Sounders games, attend gatherings, etc.......but I know Im getting closer to the day I will be able to do these things. Your support keeps me going and I am overwhelmed with the response to the blog.
I know some of the people that follow the blog are fellow CML patients and I want you all to know that I constantly pray for all of you and hope that your recovery/journey will be smooth. One thing that has really hit home during this process is that nobody is immune to loss or having a loved one suffer. We all have or will experience this in our lifetimes. I have also learned that I need to make the most out of life and cherish all the great things this life holds.
Recently my best friend suffered a great loss and listening to her life story reminded me that life is about giving and sharing personal strengths. I was very sad also to lose someone that had been influential in my childhood. She also had battled cancer over recent years, and her battle gave me strength to fight my own battle!
Thanks again to everyone for the support youve given, and continue to give! Im doing better every day and am looking forward to conquering the upcoming hurdles.
Friday, May 8, 2009
We just wanted to give a shout out to all of our wonderful nurses from the SCCA and UWMC during Nurse Appreciation Week. Nurses are true partners in the care of any patient and we were amazed by how much we relied on them in so many ways. With the nurses we worked with, they had been through so many of the same things with other patients that they were able to explain to us what might happen based on their experience. You could see the empathy that they had when Tyler was in pain and the sensitivity they had to deal with the less glamorous side of nursing.
This picture shows Jackie, our primary nurse from SCCA. She was AMAZING and we are definitely going to miss seeing her every week. I don't know how she was able to keep all of Tyler's details clear over the last 9 months, but she was a point of consistency for us throughout our time at SCCA.
Thursday, May 7, 2009
We had our FINAL appointment at SCCA today and we're still in shock! Tyler, Andrea, and I met with Jackie (his nurse for the entire time we were there) and Maria (his doctor this month) to discuss whatever details they had for us. The biggest thing they warned us about is to watch for signs of GVHD as the Tacrolimus level is being tapered off over the next 3 months. Apparently chronic GVHD occurs in about 60% of transplant patients during months 4-12.
Then they pulled his Hickman line out. It's strange to think that Tyler will no longer have direct access into his veins. In fact, he will have to get poked for his blood draws from now on, rather than having the blood drawn from his line.
Tyler had been nervous about this procedure, as they had to insert the line with a surgical procedure, directly into his vein. But everything went really smoothly. The doctor felt along the line (just barely visible under his skin in the picture above) and basically just gave a few tugs to get it out. It did hurt as they pulled it out, but Tyler held strong anyways.
In a few days, I'll be able to hug him without worrying as much about smacking his line with my naturally klutziness. He's developed a technique of guarding against any sudden moves that I might make.
We are incredibly thankful that this phase of the Battle is over and are looking forward to embracing "normal" life again! We'll continue to post, as the blog has become a great way for us to share both highs and lows and we don't really know what comes next in this battle we are fighting. It's been 9 months since we began this journey towards transplantation at full steam and we're delighted to announce that the outlook is good today!
Thanks for celebrating with us!! We'll try to touch base again over the weekend.
Sunday, May 3, 2009
Today I attended a lovely bridal shower to welcome my cousin's fiance into the family. I was a little bit surprised at how many of the friends and family members there shared their excitement with me over Tyler's recent progress. It was an amazing thing to be blessed by so many others unexpectedly. Many of these ladies have been praying for Tyler's recovery over the last several months and it brought home to me that Tyler and I don't really know who out there is reading our blog. We thank you, both known and unknown, for sharing a few steps on this journey with us.
We have been incredibly blessed to be surrounded with love at every turn in the road and we hope to repay the many favors we have been granted as we get our feet back under us again. I wish everyone had the opportunity to be touched by so many others, without actually having to live through this illness stuff.
As an added bonus, I got to hold my niece, Rachel for part of the afternoon. Although I'm far from a pro, she was willing to suffer through the experience and "bond" with Aunt Mandy a little bit. She's just celebrated her 1 month birthday and I didn't feel those extra 2 pounds she's gained over the last month at all. Until I let her mother reclaim her, that is. Rachel was the 4th of the babies born into the Keith family over the last year, and three of them were actually at the shower today. It was a baby fest!
Wednesday, April 29, 2009
After about 6 months of baldness, Tyler is showing signs of hair again. He says that he is already warmer, but I don't know how that can be when I look at how short his hair still is.
Baldness is an obvious sign of cancer treatment, so I think it will change Tyler's perception of his own health and the viewpoint of those that see him with hair again. Every little victory is a good victory.
With the great news about Tyler's bone marrow aspiration last week being completely LEUKEMIA FREE (!!!!), we can now say that he is in remission.
Hallelujah! Thank the Lord!
Tuesday, April 28, 2009
It feels like smooth sailing to us these days. We had a great weekend, with my non-stop eating machine (Tyler) keeping me in the kitchen much of the time. I'm not complaining at all. It's a treat to be able to cook for him and have him actually enjoy eating. I think he probably ate 6 full meals each day over the weekend.
We have talked about how refreshing it is that he is actually hungry again and has cravings for different things. Added to that, Ty has had a release from some of his diet retrictions which have allowed us to eat some of our favorite foods again.
With only 9 days to go at the SCCA, I am getting so excited to mark the passing of that milestone. This time since the transplant has been so much easier than the leadup to it. I'm actually thankful that we got much of the stress and agony done in the fall, although we are still suffering from some of those effects. His stomach issues have definitely improved and we are hopeful that his foot will be healing over the next several months.
His physical therapy is going well and they are starting to wean him off of the Tacrolimus, which is his immunosuppressant. Reducing this medication should allow his tremors to decrease and his neuropathy to decrease. I'm getting excited to see him moving around yet.
We have been charged to keep an eye out for rashes or intestinal issues which can be a sign of Graft Versus Host Disease (GVHD), but they have a schedule that will implement. For this week, he is taking 2.5mg in the morning and 2mg at night. The only reduction was the nighttime dose for this week.
Friday, April 24, 2009
As we are approaching Day 100 of Tyler's transplant journey, we are starting to look ahead to the Light The Night Walk that will take place this September. Tyler and I are planning to walk around Greenlake on Saturday, September 26th to raise money for the Leukemia and Lymphoma Society. This will be the 3rd year that we have participated as Team Firefly and we are hoping that you will join us! Participating in Light The Night Walk is a positive and inspirational way to support Tyler.
Our goal is to raise more than $5000 as a team, beating our record of $4712 from the first year. The more people that are willing to join our team, the easier it will be to accomplish this goal! We have had young children and senior adults on our team, so all ages and abilities are invited.
Funds raised by walkers provide:
- Lifesaving blood cancer research
- Financial assistance to cover patient expenses for transportation, medication and testing
- Free educational materials and events for patients and their families
- Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
- Comprehensive, personalized assistance through our Information Resource Center
We have been the recipient of this research, as well as receiving financial assistance that helps to cover the cost of our prescription and medical copays and reimburse us for the mileage to and from the doctor's office. I know that many other patients will benefit from the funds we raise this year.
Light The Night Walk events are evenings filled with inspiration. Carrying illuminated balloons, thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.
Fundraising can be as easy as sending out an e-mail to friends, family, and coworkers, announcing your participation and inviting them to help you meet your personal fundraising goal.
To join our team, you can post a comment or send us an e-mail.
Thursday, April 23, 2009
After today's appointments, we are pleased to report that we have a final appointment for SCCA and... our first appointment back with Dr McGee! The last day that Tyler will be an SCCA patient is May 7th. Halleluah! While we have worked with some amazing staff there, we are still excited to mark the end of our journey with them.
After reviewing his blood tests today, they told Tyler that he could relax his potassium diet guidelines. Thank goodness for that! I never realized how much I rely on beef or pork or tomatoes or beans or spinach or milk in my cooking. To be able to use those again means that Tyler and I get to start eating good food again.
In fact... Tyler wanted a steak to celebrate his final lumbar puncture, but it wasn't allowed last week. I'm thinking that it might be time for us to visit the Keg for a great dinner. As his parting goal from the nutritionish, Tyler is supposed to work on gaining a couple of pounds each month over the next several months. I think that most of that will be muscle mass as he continues to increase his activity level.
Also, they got the results of his bone marrow test. We are thrilled to report that there is NO SIGN of the leukemia in his bone marrow.
We are counting our blessings today!!!
Wednesday, April 22, 2009
Day 84 marks the last SCCA bone marrow aspiration for Tyler's protocol, so we were excited to tick off yet another item from our list of things to do before we leave them. Tyler always gets sedation with his bone marrow draws, so he had to fast for 8 hours before the procedure. As he is starting to feel hunger again, this was actually the most challenging part of the procedure.
For today's procedure, they were actually taking a bone marrow biopsy, a bone marrow aspiration, and a skin biopsy. I've posted photos below to help paint the pictures.
As shown in the photo below, they lay Tyler on his side for this procedure to allow them to access the pelvic bone. As far as we can tell, bone marrow aspirates are done in either the breast bone (center of your chest) or the pelvic bone. SCCA seems to prefer the pelvic bone for their procedures.
They start the sedation and get Tyler feeling kind of sleepy. He's technically awake, but acts as if he is asleep during the procedure. In fact, I've heard him snoring during more than one procedure. Yet, if you call him by name, he will wake up long enough to respond to you.
After numbing his skin with a local anesthetic, they insert a needle through the skin and into his bone. The nurse in the photo below is actually twisting a handle to insert the needle.
When they think they have a good spot, they draw a small sample out. When Tyler did this procedure without the sedation, this was the part that hurt the most. And he actually remembered the vacuum feeling for days afterward.
The sample in an aspirate looks like blood, which I never would have expected based on my understanding of marrow before this procedure. The tech swirls the sample around in a petri dish to see if it is a good marrow sample or mostly blood. If you look closely at the photo below, you can see a few granules in the petri dish from Tyler's 3rd sample. The presence of these granules indicate that they have drawn a good sample. Ideally, they would like to have more than are shown in the photo below, but decided that this sample was good enough.
Next, they used a bigger needle to draw out the bone marrow biopsy. They take a narrow core of spongy part of the marrow to be able to look at it as well. We'd not had a biopsy until he came to the SCCA family, but it isn't so very different in the patient portion of the procedure.
For the Day 84 procedure, they also took a small slice of Tyler's skin to check for any signs of GVHD under a microscope. This was a new procedure for us too, but as they took the sample from the same location while he was still under anesthetic, it didn't cause us any difficulty at all.
After the 20-30 minute procedure, Tyler had to stay laying down while he recovers from the poke (laying down applies pressure to the site) and the anesthesia began to wear off. During this time, he was finally allowed to eat and drink again.
My apologies if the photos were too graphic for anyone, but I thought that learning more about this procedure that I have been seeing for the last two years was absolutely fascinating. Some of you may be interested to see more about this as well.
Thanks for the great responses to Tyler's last post! It's fun to "hear" his voice again, isn't it?