This is a quick side step from news about Tyler. :)
One of Tyler's medicines is delivered each week with a couple of reusable ice packs. At this point, we are almost drowning in ice and I don't have enough room for food. I would LOVE to give some of these ice packs away to anyone who wants to pick them up. Contact me if you are interested.
Thursday, December 30, 2010
This is a quick side step from news about Tyler. :)
Saturday, December 25, 2010
The attending physician at MD Anderson suspected that Tyler's fever and chills were most likely due to platelet reaction, rather than an infection since Tyler didn't have any signs of fever after at first night. Although they wanted to keep him on antibiotics just in case, they agreed to let us fly home late on December 24th. While we are ecstatic to be closer to our loved ones, I still have some very big concerns about Tyler's health. After getting two bags of platelets in the hospital yesterday, he still was bleeding in his mouth during the plane flight and all night long. His platelet count just doesn't seem to be bumping up much or holding at all. They will most likely have to move towards matched platelets, where a member of the community will be asked to donate specifically to Tyler, rather than using the pooled platelets from normal blood drives. The idea behind matching the platelets is that Ty's body will be more likely to accept everything in the bag, rather than just the few that match from a pooled bag.
On the Christmas front, we can hardly believe that it is! We got home around midnight PST last night, so we went straight to bed. I'm hoping that Tyler will feel up to celebrating Christmas next weekend. We might be more together by then. :)
We wish you all a wonderful holiday!
Thursday, December 23, 2010
Unfortnuately, Tyler experienced some complications after his bone marrow aspiration yesterday and had to be admitted to the hospital here in Houston. As he was leaving the BMA, he had severe shivers and (although he was fine right at the end of the procedure) had a temperature that spiked up to 103 in a very short time. We spent the afternoon in the ER and then transferred to a bed on the 16th floor. The fever broke overnight, most likely in response to the antibiotics that they started him on, but we will probably be in Houston for at least a few extra days.
We are both upset about being stuck in Houston for Christmas, but we had planned on a very quiet Christmas anyways so this just makes sure that we abide by that.
His platelets were back down to 1 today, so they are giving him another transfusion now. Hopefully yesterdays platelet's were just eaten up by the fever yesterday and he will still be able to get by with transfusions every other day for a while longer.
Best wishes for a happy and healthy holiday to you and yours!
Wednesday, December 22, 2010
We flew to Houston on Tuesday morning and the flight went better than Tyler thought it would. We were both very thankful that he didn't have much pain in his ears from the cabin pressure. He was worn out from all of the hiking he had to do in the airport (as well as the early alarm clock) and laid low for the rest of Tuesday.
We met with the doctors on Wednesday morning (starting at 7am CST!) and learned that Tyler's platelets were back down at 1. He's waiting to get a transfusion now, but the doctors are pretty much done with us. They offered him the choice of continuing on the ponatanib and Ty chose to continue for now. There really aren't any other good options, so we are kind of stuck with it.
It's a relief to know that Tyler will have a drug to take for at least another month, but the ponatnib really isn't maintaining ENOUGH control over the disease to be a final answer. Our doctor in Seattle thinks that Tyler's CML may be multilingual -- meaning that it communicates along more than one pathway in the DNA. They are researching other pathways, but that research isn't far enough along yet to be of great help. I hope that some new clinical trials open up soon though!
Tyler has gotten progressively worse with each hospitalization and is finding it very difficult to regain his strength after his most recent inpatient stay.
Tyler continues to have extremely low blood counts because his marrow isn't healthy enough to make mature blood cells. He keeps turning out teenagers (blasts), but they just won't grow up and get a job!
Anyways... Tyler coordinated with SCCA to get a double dose of platelets on Monday in preparation for the trip to Houston on Tuesday. Unfortunately, when he woke up on Monday morning, he was spitting up blood. That is one of the signs of low platelets, so he immediately started calling SCCA to see if he could go in early for his transfusion. When he got his blood count back, he had a 1 for his platelet count. The normal range for platelets is 150-400, but Ty's counts have been below that for years. The doctors transfuse him when he gets below 25, just to avoid any unnecessary bleeding.
He ended up getting 3 bags of platelets on Monday because he had been way lower than expected. Thanks goodness for the Puget Sound Blood Bank and the many generous donors in our area! Tyler would not survive without your lifesaving donations. If you have not donated blood before, i urge you to try it once. It is a really easy process for almost everyone that qualifies. In fact, my mom jokes that it is like opening a tap in her arm! :)
Saturday, December 4, 2010
We heard from the Houston folks this week and they have (ever so kindly) invited us to join them in Houston later this month. I think we'll be crazy flying around the country the week of the Christmas, but it is definitely worth it for Tyler's health.
His immune system has still not recovered, which should have happened by now if the medicine was working. I am nervous that they will take him off the Ponatnib at this next visit, but we may not know until after the doctors review Tyler's health and his lab results. Our doctor (Dr. Oehler) is attending a Hematology conference next week, so we hope to hear more from her on exciting new therapies that Tyler can try.
With his current poor health, he is not in great shape for anything else treatment wise. Our focus is on getting him to eat more and exercise more over the next few weeks so that we can give him as many options as possible. He continues to get transfusions of platelets every other day, but is getting through those okay.
Friday, November 26, 2010
Just a quick note to share that Tyler and I finally go to come home from the hospital today! He is still dealing with most of the same issues, but the doctors finally said that they weren't doing anything in the hospital that we couldn't do at home. I am really looking forward to sleeping in my own bed tonight!
He will have follow up visits every other day at SCCA, so they will keep a close eye on him. We also need to connect with our team down in Houston to see what to do. Today is Tyler's last dose of ponatnib, so we really need to get back down there and get him another month of medicine. Because the medicine must be closely controlled through the clinical trial, Tyler has to get down to Houston to get refills. At this point, I think they might be the only ones that have the trial going right now.
Sunday, November 21, 2010
The doctors at UWMC say that Tyler's Adenovirus has also been found in his blood not just his nose and throat swabs. The infectious disease specialists haven't been overly concerned about that, but found another bug of some sort in his blood cultures today. They aren't sure what the new bug is, but have added more medicines to his cocktail in hopes of attacking it.
We did end up canceling the trip to Houston, at least for now... I'm not sure what happens next, other than we hope Tyler gets off oxygen and stops growing infections in the samples they take from him so that we can go home.
Thursday, November 18, 2010
There was a bit of a scare yesterday, as Tyler was dozing. His breathing has been very labored with all of the congestion and when Andrea tried to rouse him from sleep, she couldn't get him to wake up. After the excitement was over (many thanks to the excellent staff here), Tyler was on oxygen and a pretty high level. As a result of all of the tubing and the mask and the fact that it is still hard for him to breathe, especially as his mouth and throat relax, he had another rough night. Even with the oxygen mask on and pumping at a high level, his oxygen saturation levels fell to dangerous lows.
He is still on oxygen this evening and feeling cruddy, but he has seen more specialists (infectious disease) with the hopes of finding out if SOMETHING else is causing his continued pain, problems, and frustrations. They have diagnosed a sinus infection and a cold, but it seems like more is going on because his throat is still very sore and raw looking.
It's hard to imagine that he will be out of the hospital and ready to fly to his Houston doctors on Sunday, but we will cross that bridge when we get to it. Many thanks for the prayers and the encouragement. Thanks also to my coworkers who have been so understanding when I end up working from the hospital, instead my normal desk. I'd be lost without them!
Tuesday, November 16, 2010
Tyler showed a definite upswing in energy this evening. He slept much of the day and felt lousy through the afternoon, but around dinner time he actually felt like a little bit of the congestion was clearing up. I was certain that he was feeling a little better when he made several Fantasy Football moves after he had dinner. My darling husband is the king of all things related to statistics, so he is a huge fan of Fantasy Sports.
I don't know if the improvement was due to the extra sleep, some stronger antibiotics, or something else (all of you?!?). I can only hope that he is now on the right path.
He is scheduled to fly back to Houston next week to wrap up the end of his 2nd month on the Ariad drug. With his illness, we are uncertain if he will be able to make the trip. Here's hoping a quick recovery is headed Tyler's way.
Monday, November 15, 2010
Tyler finally broke the temperature barrier this evening and had to go to UWMC for more observation. He's still feeling pretty cruddy, but I am hoping that he gets some medicine that really helps him get back on track.
The downside is that he is in isolation for at least the next few days, so I (and any visitors) must be gowned from head to toe to even enter the room. I know that they are trying to protect their other patients, but the isolation procedures makes it very unfriendly for any visitors and caregivers.
Sunday, November 14, 2010
A normal experience like catchng a cold takes on much more significance when the patient has no immune system. Tyler has been suffering for a little more than a week, but we don't know when he will be in better shape. It's gotten to the point where it is very hard for him to swallow (sound familiar?) because his throat is swollen and tender. He can't talk much and is congested in both head and chest.
He was already on whatever drugs they can give him to fight infections, so we are just hoping that he doesn't break the 101 degree mark and have to get admitted to the hospital. He did get a chest x-ray on Friday, and they haven't dragged him off to UW yet.
I just wish that I could do something to help. He's pretty miserable.
Friday, November 12, 2010
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.
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.
Tuesday, November 9, 2010
Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood units from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.
- Black and African American
- American Indian and Alaska Native
- Asian, including South Asian
- Native Hawaiian and other Pacific Islander
- Hispanic and Latino
- Multiple race
- You must be between the ages of 18 and 60
- You must live in the US or Puerto Rico
- You must promise to donate to a patient in need if you are called to save someone's life
Monday, November 8, 2010
If any of you are planning to spend Veteran's Day cruising the sales, I want to suggest that you take advantage of a very special sale at the Gap family of companies: Gap Give & Get Supporting LLS. By using this 30% off coupon at Gap, Gap Outlet, Banana Republic, Banana republic Factory Stores, and Old Navy (tough, I know!), you actually help the Leukemia and Lymphoma Society (LLS) develop cures for cancer. For every purchase made using this coupon between November 11th and 14th, 5% of your purchase will be donated to LLS!
It sounds to me like this would be a GREAT time to start my Christmas shopping... 30% off for me, great gifts for my family, and 5% to LLS!
Get the coupon at http://www.gapinc.com/giveandget/lls/ and help us to spread the word!
Tuesday, November 2, 2010
Im not sure everyone knows this story about how I developed foot neuropathy so I thought I would write it out for those who dont know. Back in the fall of 2008, I went through several rounds of cranial/spinal radiation. The leukemia had spread into my spinal fluid, and the radiation was needed to clear it out to prepare for my bone marrow transplant with my dad. As a result of these treatments, I was hospitalized with a remarkably bad Mucositis. I could not eat food or take any of my pills. My pain was a 10 on a scale of 1 to 10.......and so I began approximately a two month stay at the 8th floor of the University of Washington. I would have to stay that this was probably the worst timeframe of my life. I had a central line put in my chest, I experienced constant nausea and vomiting, I averaged about 2 hours of sleep each night and I also lost about 25-35 pounds. Week after week I became more and more hopeless..........this was also a time that I found out one of my best friends also was diagnosed with leukemia. One of the worst things that happened was that I developed what is called Foot Drop.
Foot drop is essentially something that happens with some chemotherapies, but also can develop from physical damage to the peroneal nerve. During this time with the mucositis, I was on a morphine drip to control the pain. I was also instructed to sleep with my head elevated to avoid additional issues with the mucositis. The combination of these two things ended up causing the condition of foot drop. I fell asleep one night.....turned on my side and maybe 3-4 hours later I woke up, but could not lift my left foot upward. It was numbish, and I also felt down the left side of my left leg a numbness. I tried to walk to the bathroom, but my foot would only drag. Either the chemotherapy or several lumbar punctures could have damaged the nerve or it could have been from physical damage to the nerve. I believe it was the latter. When I had fallen asleep on the morphine drip, my right knee was firmly placed on the nerve for several hours. Because of the morphine, I could not feel the pain and so I believe this is what caused it. They started me on physical therapy while the nerve would supposedly heal slowly over time. The ability to lift my foot did slowly improve over time, but it never has recovered fully.
As a result of this I lost one of my lifelong passions. I can no longer play soccer because my agility, speed, and coordination are completely gone. This has been very difficult for me, and even watching soccer games can be difficult. My disease has also cost me close to two years now of one of my other passions (working at Childrens in the garden). For close to ten years I had the amazing experience of working with so many wonderful people and being able to be a part of such a great organization. I truly hope I can get back to being there again.
The best thing Foot Drop did for me when it took these things away from me, was that it gave me the opportunity to find a new passion. I am now heavily addicted, and devoted to golfing....its probably the only sport/activity other than darts, pool, bowling that I can do now.......and it is amazing how much fun I have golfing! The best part of being able to play a lot of golf is that you naturally get better. Once you are diagnosed with cancer, you also learn to appreciate the little things much much more. Just being able to fill the competitive void with the challenge of golf opened up so many joys in my life. I used to care about my score back in the days when I only played 1-3 times a year for about 20 years. Over the last two years I would say my handicap has gone from about 30 to close to 14. I would say the main reason for this besides playing more ofen, is that I stopped caring about my score and just appreciated being outside enjoying each moment. I look forward to many more great golf outings with friends and family.
I hope someday that the nerve will somehow heal, or maybe there will be some sort of surgery to repair the nerve, but for now I will just appreciate what I have and keep all of the fond memories of what I used to have.
My most recent blood draw yesterday revealed another small decrease in my blast %(a.k.a. storm troopers) I dropped from 8% last friday to 4%. Small victories are cherished, and it was the best birthday present I could have hoped for. The ty-fighters seem to be gaining momentum.....at least for now, and I can tell you how happy it makes me. The preliminary results of last weeks bone marrow draw are not available yet, but I am looking for them to come in soon. Im still getting platelet and red blood cell infusions usually every other day. Its been somewhat difficult spending so much time at the clinics, but it doesnt take long for me when I look around to realize it could be much worse! There are so many people in various stages of treatment in Houston, Seattle and of course all over the world. At SCCA you can always tell when people are in absolute misery. Ive been there and I know how it feels........I dont want to ever get back to that place where not only are you faced with a physical battle, but you also are staring straight into an intense psychological battle.
Its so easy to focus on "Why me?" Its very easy to struggle with the idea of "What did I do to deserve this?" This disease and so many other horrible cancers can take their toll on the mind, the heart, and the soul. Its been awhile since Ive had the intense version of the psychological battle, and I truly feel the reason is #1 Mandy. I also give massive credit to all that follow our struggles and our joy. The comments we receive, the well wishes, the prayers.......the endless support are also a huge factor. I also have to mention all my other caregivers who drop everything on their plate to be with me when I need them. My Seattle doctor Vivian Oehler has been amazing!.....the SCCA staff, my nurse Laura, scheduling staff at SCCA, all my infusion nurses! The nursing staff in Houston, and of course my Houston doctor, Dr. Cortes. I also want to send out a thank you to the Portland staff that I never truly got to know, but who have treated Hans so well and wanted me to be with them and the Ariad trial. Im also thinking about another friend who I imagine is staring straight into the psychological battle that occurs during radiation treatment.....Yanni my best wishes and thoughts are with you!! Jeff and Renee, I hope you have found some form of enlightenment with your second and maybe third opinions.
I feel like Im on a massive team trying to rescue me from the grips of this horrible disease! Right now Im in a pretty good place, despite having a compromised immune system with few good white blood cells to stave off infections. I have to be careful. I have to avoid situations where I can easily get sick. This usually means avoiding crowds, avoiding being around young children who seem to always be in various phases of being sick or even parents who are around those who are sick. I miss being able to spend time with my nieces and nephews, and watch them grow bigger. Unfortunately Ive missed being able to go to almost all of this years Sounder games, missed many thursday night dinners at my dads with those in my family that I dont get to spend a lot of time with. I miss all of my Ballard friends, I miss all of my soccer friends, I miss all of my friends at Childrens hospital.I miss being able to make travel plans with my wife, to all of my poker buddies.....I miss you! I miss being able to golf for the last two months, and I miss football at Lukes with three games going at once. My goal is get back to a place in which I dont need to miss any of these things and many others!
Clear eyes.......Full Hearts....Can't Lose!!
Friday, October 29, 2010
Hello ladies and gentleman. Im back in Seattle after another short visit down south in Houston. The trip went pretty well overall with the exception of being a bit worn down from flying. My energy these days is down a bit from being anemic and neutropenic.
Dr. Cortes was quite pleased with my initial response to the Ariad drug. The very fast improvement in my blast count was the main reason for excitement along with very few side effects on the medication. My brother went with me this time and over the last month he has been my main travel caregiver to my every other day blood transfusions. He seems to enjoy hanging out with his big brother and I know I have enjoyed hanging out with him. On wednesday Houston actually set a temperature record for that day at 91 degrees. We werre in the hospital all day so it was nice and cool in there. Wednesday completed my first 28 day cycle on Ponatinib, and we did a few more tests than two weeks ago. We did a regular complete blood count, a research blood draw of about 10 tubes of blood, a physical exam, an EKG, vital signs check, and finally a bone marrow aspiration.
The staff down there is very friendly, and my bone marrow nurses Dee and Tommy were amazing. It was as if I was just having a great conversation with them throughout the procedure, and I hardly noticed the lydocaine injection and bone marrow needle going in. Tommy had to take over for Dee as he was the heavy muscle to get through my stubborn bone in my hip. It all went very well with minimal pain yesterday and today. At the end of wednesday we had to hang out to get a platelet transfusion at the Mays clinic across the street at this enormous facility. The two clinics are both part of M.D. Anderson but are separated by a quarter mile long sky bridge. By the time we were done at 8pm (12 hour day at the hospital)....we had missed the last shuttle back to our hotel, but realized that we could actually walk from the Mays clinic from the parking garage only about a 3 minute walk. It was good to get a little exercise after sitting around all day.
As my good friend Hans has mentioned many times to me, its good to remain cautiosly optimistic about good results....thank you Hans for the reminder! My initial response with my blast count went from 79% on day 1 to 1% on day 22...it has now bounced back to 8% over my last 3 blood draws and actually today it went back down a little to 6%. Its easy to get very excited when things go well, but as Ive been reminded too many times things can turn the other way quickly.
The results of my bone marrow will start coming in early next week....at least the preliminary results. These should be a better indicator of how things are really going with the new medication and Im very excited to see how they look. So Im now into cycle 2.....early days, and overall am feeling pretty well despite being low on my counts and needing transfusions constantly. My platelet production isnt working right now so Ive been getting those at least every other day. Also now my red blood cell count has been dropping making me anemic and needing transfusions twice for those. My overall white blood cell count has now dipped below 1000 and my infection fighting neutrophils have bottomed out at around 30 (neutropenic is below 500)
I will be celebrating another birthday on sunday and with my amazing wife by my side Im feeling younger all the time. I know a lot of people are going through some tough times right now with their own issues, but I would like to send out a special best wishes for Carleen with her father and of course Hans and his family.
This one is for you Lammy........power to the butt chins!
Tuesday, October 19, 2010
So far the Ty-fighters seem to be working really well. I've been taking the drug for 3 weeks now and, as expected, my white blood cell count and neutrophils have dropped very low. Being neutropenic gives me less energy, and puts me in a much more precarious position for getting infections, fevers, etc.... So far I have not been sick, but I'm being very careful and doing lots of hand washing, drinking lots of fluids, sleeping, and eating well. I have needed to go to SCCA every other day for blood draws and transfusions. Most of the transfusions have been to give me platelets, but I have also needed some red blood cells a couple times. The reason I believe that the drug is working is because on Day 1 when I started the ponatnib, my blast % was at 79%.....meaning that 79% of the cells they looked at in my blood sample showed disease. Every blood draw since day 1 has shown the blast % to decrease, with my most recent blood draw showing that percentage down to 10. That was on day 20.
Clearly the amount of Ty-fighters have decreased, but the Stormtroopers have decreased far more significantly. Actually, my day 20 blood draw showed a slight increase in white blood cell count and my neutrophils doubled from 30 to 60 which may be a good sign. Any sign of an increase in neutrophils is good and I will know more tomorrow. So now it's off to recruit more Ty-fighters and get some good sleep.
Clear eyes.........Full hearts......Can't Lose!
Monday, October 11, 2010
Last week, Tyler had some serious ups and downs. On Monday night, he woke up about midnight and found, after blowing his nose, that the blood wouldn't stop. Since his platelets had been low on Friday, we were certain that a low platelet count was the reason that he couldn't clot. We went to the ER and, after about 4 hours, Tyler got a bag of platelets and finally the bleeding stopped.
The doctors really wanted to observe him for a few hours, to make sure that there were no lingering effects from the blood loss, so he got admitted for the day. Thankfully, he was able to come home mid afternoon, after another bag of platelets.
He went to SCCA on Wednesday to check his blood counts again and learned that he needed some red blood cells, so he got more transfusions on Wednesday. And again on Thursday and Friday...
We were nervous over the weekend, but he made it through safely. We also got to enjoy the comedy of Jim Gaffigan on Saturday evening, which was a surprise treat for Tyler. (Hot Pockets.....)
He heads to Houston tomorrow for his Day 15 appointment. I am predicting that Tyler will spend about an hour in the waiting room, a half hour with the doctor, and 3 days in Houston overall. I'm really glad that most of our treatment has been in Seattle!
Monday, October 4, 2010
Well, its day 6 or for most everyone else Monday. So far I am feeling pretty good with the therapy. I have had some early morning mild headaches, and some mild muscle pain which was expected. I will be getting my bloodwork looked at this week at SCCA, and they will forward the results to Houston. Next week I will be headed back down to Houston for a day 15 check-up. They will do a physical, bloodwork, and a couple other tests. Day 22 will be back in Seattle for bloodwork, and then Day 28 back in Houston. They will be doing another Bone Marrow Aspiration at that time. That appointment will coincide with Day 1/Cycle 2........and this will repeat every 28 days.
At this time we are hoping to be able to transition to Seattle full time once the trial starts locally. Hopefully my doctors can convince the drug company to allow this. It seems to make sense, but we're unsure of what the rules will allow right now. My energy has been pretty good, my appetite has been great and I'm looking forward to seeing how the results of taking this new drug will play out.
I cant thank all of you enough, that have supported us so loyally all this time! Its very uplifting to know that so many people are there for us! We feel blessed to have such an amazing army of supporters, family, friends, and fellow survivors/caregivers helping us fight this disease every single day!
I will do my honest best to keep all of you updated as much as possible, but also I want you to know that most of the time I want to live my life as normally as possible. Sometimes that means there may be some stretches of silence. I also want to let you all know that if any of you need someone to talk to about issues you may be having dealing with cancer as a survivor, caregiver, or friend of someone you know..........please dont hesitate to reach out to me to talk about it. I wont have all the answers, but I may have some helpful words.
Tyler......(battling CML for 3 years and 8 months now).
Thursday, September 30, 2010
Yesterday was a very good day for us! We were finally accepted into the Phase II trial in Houston. They were able to accept my liver function test from Seattle, and so we're off and running with a new drug to fight against my cancer. At the Bush International airport I took my first dose yesterday as we continued our whirlwind adventure from Seattle to Houston, and then home a day early re-directed from Houston to Chicago and finally home late last night around midnight. Mandy is a rock-star!! I cant imagine having a better caregiver. Not to take anything away from all my other caregivers which are all fantastic and always willing to be there for me, but she is so positive and so giving of herself. I always feel like we can accomplish anything when we are together!
Alright so you probably noticed my strange title for this entry. My geeky 80's side is coming out here, but I started thinking about the next phase of our battle. I know the tiefighters from Star Wars were actually flown by the stormtroopers, but in my battle the good side stole a Ty Fighter from the troopers and is turning against them. This new drug represents the Ty-Fighters battling against the evil empire (bad white blood cells-stormtroopers). Thus the geeky title.......well anyway it made sense in my head! As I write this the Ty-fighters have been attacking the evil empire for 2 days now and I can already feel the number of stormtroopers dwindling.
My energy is good. My appetite has continued improving since my hospital stay in May, and I have gained all my weight back that I lost that month (10 pounds). My brother gave me a new nickname (Belt Loop), because I had to punch a new hole in my belt a couple months ago. I would like to gain another 10 pounds, but hopefully with mostly muscle weight. I have to remind myself constantly to drink fluids, and it is very important to drink a glass of water with the drug. I have to have a two hour window on each side of taking the drug (4 hours without food), which is causing Mandy some nervous stress as she believes in 6 small meals a day. I think we can figure this out though. Im really excited to have this new ammunition by my side, and look forward to heading the right direction.
Thank you everyone that was able to attend the Light the Night walk, and we were proud to represent a very strong Team Firefly this year!! I will continue to let you all know how things are going and thank you for such Strong support!!
Tuesday, September 28, 2010
The 2010 Light the Night walk was AMAZING! The weather was the best we've seen in our 4 years of participating with it being mild enough to be in a t-shirt the whole time. We walked in honor of a great many people who have battled blood cancers: Tyler, Hans, Darren, Cathy, Jim, and Rose.
|Team Firefly 2010|
I apologize that I didn't get more pictures of individuals, but I think I will have to designate a team photographer at next year's walk. There are too many things to do and too many people to talk to at the walk!
My sister posted a few more photos on her blog too, if you want to see more photos from our evening.
We got the news today that the crew at MD Anderson got permission to take Tyler's blood result from Monday, so (we think) he starts on the Ponatinib TOMORROW! We are so excited about this news and hope that his disease responds to this drug for the long term. Thanks for the many prayers being said on his behalf (and to LeAnn for changing the prayer from ALT going up to going down)!
I guess everything won't be settled in my mind until he actually takes the first dose, but this is a definite answer for us!
Monday, September 27, 2010
Tyler's ALT was down to 141 today, so staying off the medications over the weekend definitely helped that out. Unfortunately, his WBC climbed from 1.6 (well below the normal range) to 11.77 (just above the upper range of normal) which is a huge sign of why we need to get on a drug soon. Without a tyrosine kinase inhibitor like Tasigna (or Sprycel or Gleevec), the disease starts to get out of control fairly quickly.
Wish us luck in our appeals to Houston this week!
Thursday, September 23, 2010
It's a true pleasure to be home after several days away!
Just a quick update on Tyler's health... While he didn't meet the trial qualification this week, we plan to try again next week. We just need to get him a little bit lower, so the doctors are holding much of his medication over the weekend. He will get a blood test next week and then we'll talk with Houston again (assuming his ALT gets under 140) and see when they can schedule us back in.
On another front, our team (Team Firefly) is currently leading the Seattle area for fundraising. I'm so excited! We are getting very close to our goal for this year ($10,000) and just need to pull in a few more dollars from our team. I'm still a few hundred dollars short of my personal goal, so I will be hosting another fundraising event just after the walk. It's not too late to join us, if you are free this Saturday! We'll begin gathering at Greenlake about 5-5:30 pm or so. Everyone on the team who raises (or donates to themselves) $100 gets a t-shirt and balloon. You are still welcome to join us, even without hitting that mark, but getting just a few friends or coworkers to donate $10-25 can get you there pretty quickly.
After we had posted the previous message, we got a call from our PA telling us that the lab had run the wrong test on Tyler's blood this morning. So we headed back upstairs for another blood draw and then decided to have some lunch and chill out in one of the common areas.
When the PA called back again, it was with the news that his ALT had climbed again, this time to 164. He started 2 medications while here and one of them is likely the cause of the climb, so we are holding his medications over the weekend in the hopes that his liver can settle down a bit. We'll test again next week and probably come back again as soon as the numbers are good.
We're flying out as soon as we can today, although a little bit behind schedule. We hope to see as many friends and family as we can at the Light the Night walk on Saturday.
Anyone who has dealt with a serious medical issue knows that the majority of the stress is actually caused by the waiting times. The medical issue is a pain for certain, but when you are actively fighting, then you can accept it more.
We are in another waiting period. Tyler gave blood this morning about 9am Texas time and we are just waiting to hear what the results are. I really hope that he continued his downward trend.
I was reading up on ALT last night and learned that a study somewhere asked people to eat fast food twice per day for a month and not exercise. ALT levels apparently climbed within the week and climbed even higher over the month. All of sudden, I am starting to feel a little better about guilt tripping my husband into eating leftovers more often than he ran out for fast food at lunch time. :) Admittedly, this is only one study and seemed to indicate that obesity is a problem (more than fast food specifically) because the fatty deposits on the liver can impede the liver's ability to work efficiently. I just thought it was interesting....
We hope to get results sometime within the next hour and will certainly share what we know when we know it. Thanks for the many prayers headed our way. We hope that TODAY is the day for Tyler to begin on Ponatinib (the new name for the Ariad drug)!
Wednesday, September 22, 2010
After wandering the halls of MD Anderson all day today, the afternoon blood test showed that Tyler is even further away from our goal number. He was at 144 this morning, but had risen to 150 at the 2pm blood draw. Hopefully the news is better in the morning...
We just met with Dr Cortes and his team again. They are ready to proceed with Tyler going on the trial, EXCEPT for his liver function tests. He is just above the acceptable range on his Alanine Aminotransferase (ALT) numbers. He can only be 2.5 times higher than normal, which is 140. On Monday, Tyler was at 163. On Tuesday, he had dropped to 157. Today's test was 144 -- just 5 points away from what we need. The doctors are confident that Tyler can hit the mark, especially with the downward trend he is on. We've asked them to test again this afternoon (scheduled for about 3 hours from now) and hope that he qualifies then. If so, he gets his first dose TODAY!
If not, we will test again in the morning and hope that he hits the mark by then. We were scheduled to fly out tomorrow morning but, if he misses this afternoon's test, we might have to reschedule. We are so close and really want to hit this mark. Everyone who follows our blog closely knows that Tyler has been wanting to get on this trial since last January, but has always been just outside the qualifications for it. Please send a prayer up in his name that the 2pm or morning blood draw will be the one that works.
By the way... the doctors have prescribed a couple of days of steroids for Tyler, to help his liver process whatever junk it is trying to wade through. If you plan to golf with him in the next month, consider yourself warned that he might be playing a little better than normal. I won't be surprised if his drives suddenly start getting him a little closer to the pin. ;)
Tuesday, September 21, 2010
Day 2 went a little bit smoother for us, just because we had some ideas on where to go when. We met Alexa, the PA who works with Dr Cortes and she was really great. We also met with the study nurse and signed the consent form to allow Tyler into the Protocol.
Because we got done with all of our appointments about 3:30pm, we decided to go out to dinner. We ate at a very tasty Mexican cafe and devoured about a bowl full of guacamole! There is definitely some tasty food around here...
Monday, September 20, 2010
Today we were reintroduced to the frustrations of learning the ways of a new facility, and dealing with the initial process of getting established at that facility. We had a very long day and it didnt seem we accomplished as much as we had hoped to. Sometimes expectations aren't met, but I think we have definitely crossed the first hurdle of our new learning curve. Dr. Cortes seemed to be very nice and we look forward to our next meeting to hopefully begin the phase II trial. I had a couple blood draws, a bone marrow, and meeting with the doctor. Tomorrow brings a couple more appointments, and we will hopefully have an answer to whether we are in the trial by the end of the week. The facility is very clean and organized even though our flow through the day was a bit disjointed.
The bone marrow was done without sedation, but actually wasnt too bad. They also took part of my bone for biospy. The doctor, upon hearing we were planning on flying home Thursday, seemed to indicate that he hoped to get me started on the trial by the end of this week. He hoped we could stay a couple extra days if need be to get started. If I am accepted into the trial, we will need to be here on the start day, day 15, and day 28. We hope to transfer to Seattle when the trial starts there, and that didn't seem like it would be an issue when we brought it up. The Seattle trial opens up in about 4 weeks possibily. We are a bit tired from the flight and long day, and are excited to have a relaxing evening. We get to sleep in a lil tomorrow, and don't need to be at the hospital until 9ish.
By the way its 88 degrees here, but no sun and its been raining since we got here and its supposed to rain all week. Apparently thats normal for this time of year in Houston so close to the Gulf.
Wednesday, September 15, 2010
Tyler has decided that he needs to gain another 30 pounds. I think he wants to get back to his "fighting weight" from his pre-transplant days, but he still looks pretty good to me. What do you think?
Tyler actually tells me that his dad and brother have started to call him "Belt Loop" because he had to add an extra notch in the belt to be able to hold his pants up. He's lean, but not mean!
Thankfully, his appetite is back to normal and he is eating a wide variety of foods again. A lingering side effect from his many challenges with mucositis is that he strongly prefers moist foods. I think his saliva production still isn't back to normal, despite the appetizing cooking being produced in our kitchen. Thankfully, Tyler and Gump have dubbed me the Soup Nazi as a tribute to the many different soups we eat at our house.
Tuesday, September 14, 2010
Tyler's blood counts have been dropping a bit over the last little bit. On Thursday of last week, his platelet count had dropped to 22K, with the normal range being 150-400K. Because of that low number, the doctors wanted Tyler to come in on Monday and get his blood checked again. Thankfully, his platelets held over the weekend.
His white blood cell count, however, dropped to 2.6 and his neutrophil count dropped to 900. Neutrophils are the kind of white blood cells that are devoted to fighting off infections within your body. We will have to be extra careful over the next few weeks to keep Tyler from being exposed to germs, at least until his neutrophil count begins to climb again.
Just before we had dinner, Dr Oehler called us to ask if Tyler would be willing to go to Houston next week. Even though we thought the SCCA trial for Ariad would be up and running pretty quickly, it appears the trial has just passed the review board in Houston and Dr Cortes is willing to meet with Tyler about joining the trial. We aren't guaranteed a spot, but are hoping that Tyler's marrow, spinal fluid, and liver functions are all looking good enough to let us take part in this trial.
Wish us luck with the interview next week!
Monday, September 13, 2010
Sunday, September 5, 2010
In any case, I hadn't posted a picture in a long time so I thought I would share his handsome face with friends and family again. :)
We are still enjoying the good news from last week and hope that his blood test results will continue to stay positive. If he can just coast long enough for the Ariad trial to open up (and convince them to take him on), then we have a shot at a new drug.
As Ariad has shown successful results for many patients who have disease that was resistant to the other drugs or just never reached a long term remission. The press release referenced above says:
"A complete hematologic response (CHR) was observed in 85 percent (22 of 26) of chronic phase CML patients evaluable for hematologic response (16 patients entered the study with a baseline CHR). A major hematologic response was observed in five of twelve (42 percent) evaluable patients with accelerated phase, blast phase or Ph+ ALL. "- June 7, 2010 press release on AP24534
I'm hoping that Tyler finally ends up on the good side of those percentages. Too many times we have had doctors say to us "99% of the time, THIS happens" only to find out that Tyler is again in the 1% where it doesn't work. Either they are fudging the numbers or his body delights in misbehaving for doctors. I swear that Tyler is a model patient, following all of his medication schedules and telling the doctors (and nurses) anything they want to know.
Thursday, September 2, 2010
Not sure if everyone has been invited, but Mandy and I hope that everyone knows they're welcome to join us for the Light The Night walk at Greenlake again this year. Be a member of Team Firefly and walk with us if you so desire. We would love donations, but more than that we would just enjoy having people join us for the walk (donations or not). I believe all the details are on the right side of the website.
Hey all! Im hoping this message finds everyone doing well. So as Mandy probably mentioned recently, I had some of the blast cells show up again in my blood results about 3 weeks ago. My doctor was prepared to manage this with an additional chemo pill called Hydroxurea. She was on vacation recently, but with strict instructions to contact her if my blasts were increasing. Apparently the last two tests since the bad one have been fairly normal other than my red blood cell count and platelets decreasing a bit. Also three weeks ago my liver function test was a bit high and concerning.
Well I just got off the phone with Dr. Oehler this morning, and she informed me that she could not find any blasts in the blood from this Monday's blood test, and that my liver function had improved to non-concerning levels. She also told me she had approval for a new drug called Busatinib from the company, but would need to go through FDA approval and SCCA ethics committee approval. That may be about 3 weeks away. At the same time it looks like the race is on between an Ariad trial opening up in Houston and Seattle. The one in Houston will probably open up first, but the one in Seattle may not be too far behind. When we had talked with Dr. Oehler a few weeks back it appeared likely that upon acceptance I may be headed down to Houston for awhile, and then brought back up to Seattle when the trial opens here. At the time it seemed likely there would be about a 6-8 week difference, but now it may be less.
So essentially we are in a holding pattern based on drug approval, trial approval, and of course my blood results going forward. I am encouraged that my Nilotinib has held me up this long, and that I feel relatively okay. Ive been able to get out occassionally for golf and Ive also been able to attend a couple Sounders games. As usual I continue to play what my father calls (little boys games)........keep in mind he participates in these also..........fantasy golf, baseball, football. In Yahoo fantasy golf, there are approximately 120,000 to 150,000 people involved competing in various leagues. There is one section where you can see how you compare to all users, and I recently cracked the top 50 and sat at 26th place overall for all users. I am now back down to 64th with 3 weeks left, so wish me luck. I know I know its just fantasy sports, but how often can you say you were in the top 50 in the world at something?? Okay enough bragging!
The next couple weeks will probably find us steering the ship towards our next course of action with my Leukemia. I continue to remain positive that eventually we will find ourselves headed in the right direction, and maybe just maybe get to a place where it could appear further in the rearview mirror.
Take care everyone and have a great Labor Day!
Saturday, August 21, 2010
We got a call from Dr Oehler, way after business hours, the other night. She tells us that Tyler's latest blood test did show signs of circulating blasts. This means that time is running out for Tasigna, as it is starting to have trouble controlling the leukemia again. His other counts were okay, but we don't know how long it will be before the leukemic cells start to get out of control again.
He may not be able to wait until the Ariad trial opens up in Houston. He'll be getting blood counts at least weekly for the next little bit, as Dr Oehler keeps a very close eye on his status.
Friday, August 20, 2010
Give & Get is Here!
Enjoy 30% Off and The Leukemia & Lymphoma Society gets 5% of what you spend
Shop 4 days only, August 26–29
At Gap, Banana Republic, Old Navy, Banana Republic Factory Store, and Gap Outlet in-store
Use the coupon at http://www.gapinc.com/giveandget/lls/ to get your discount.
Tuesday, August 17, 2010
Tyler got a call from the doctor today and found out that his last blood test results showed an increase in leukemic cells. While there are no blasts, his PCR went from .01 to 3.0. (I think, although I got this second hand....) This is definitely a bad sign, as it indicates that the disease is starting to get out of control again.
The doctor listed Tyler's options for him, although they haven't really changed. The Ariad trial probably won't open up in Seattle or Portland until October/November, which might be too long to wait. There might be a spot on the hedgehog trial in October. In addition, Tyler is still a candidate for a cord blood transplant.
Of these options, he still prefers the Ariad trial. Because of the delay in getting things here, we might have to look around the country to see if we can find a spot on the trial somewhere else.
Tyler is, understandably, bummed about the test results. He has just started to feel good after the shingles outbreak, so the news is coming at a tough time. So... We are now scouting the country for new trials that Tyler would be eligible for. He'll have another more in depth blood test in the next week to get more details about what is going on inside him.
Monday, August 16, 2010
I got an e-mail today, notifying me that I was the winner of tickets to this weekend's Seahawks game against the Green Bay Packers. This was a promotion that our Leukemia and Lymphoma Society chapter offered for online fundraisers. Thanks to all who donated online this month for helping me to achieve this!
Since this really is a prize for our great friends and family that have been supporting our efforts, Tyler and I decided that we should auction the tickets off to raise money for Team Firefly, so you each have a chance to win the seats for yourself!
Seattle Seahawks vs Green Bay Packers
Saturday, August 21st @ 7:00pm
We will start the bidding at $50/pair of seats and close the bidding at 7pm on Friday 8/20. If you want to bid for the tickets, please send an e-mail to firstname.lastname@example.org with your bid. I will take the highest bid as of Friday evening, but will send out updates to all bidders so that you each have a chance to win the tickets!
Payment will be made online at http://pages.lightthenight.org/wa/SeattleL10/MBledsoe for the winning bidder and tickets will either be delivered to you or left at Will Call.
Wednesday, August 11, 2010
It's that time of year again! We are planning to walk around Greenlake on the evening of Saturday, September 25th with as many friends and family members as we can convince to join us. Our goal is to raise money for the Leukemia and Lymphoma Society, and support their efforts to find new cures for blood cancers.
If you can join us for an evening stroll, please go to http://pages.lightthenight.org/wa/SeattleL10/TeamFirefly and click JOIN at the bottom of the page.
If you can't join us, please donate at http://pages.lightthenight.org/wa/SeattleL10/MBledsoe
Many thanks for your continued support!
Mandy and Tyler
Tuesday, August 10, 2010
Sorry for the long delay in posting. Life has been busy for the last few weeks!
We have been joking around the house that Tyler is no longer a cyclops. For much of this shingles battle, he was unable to open his left eye because of pain or the sensitivity to light. About a week ago, he just started using it again! It's fun to see both of his eyes again and know that he can actually see me again.
He also started driving again, which helps him to feel less trapped in the house. I was a little concerned because of his comments on the first day that he tried driving. He decided to take a test drive to Starbucks. I'm certain that his drive for vanilla latte was the real need that prompted him to get out of the house, but thankfully things went well on that short trip. He then decided to take a slightly longer trip to enjoy his freedom, which was great and put him in very good spirits.
While we were watching TV later that evening, Tyler said to me "Wow! I can almost see the TV again.". For some reason, this made me feel like the parent of a 16 year old and I started worrying about the fact that he was out on the road again. Thankfully, his eyesight has continued to improve and the doctor was very pleased with how well Ty was doing at our visit last Friday.
Hopefully he soon tells me that he can see perfectly fine again and I don't have to volunteer to drive every time we are headed out! ;)
Tuesday, July 27, 2010
For the many who wanted to know if Tyler was able to play golf... I figured I had better post a quick update.
Tyler had an eye appointment on Friday morning and the doctor continued to be pleased with the progress made. Unfortunately, Tyler isn't quite as happy. He still feels like something is scraping the inside of his eye and finds that he is most comfortable with his left eye closed. He is unable to enjoy this stretch of beautiful weather because he is also very sensitive to bright light.
Despite all of that, he did travel to Bellingham for the annual Ballapalooza golf outing. And after much begging by his wife, he decided to give the golf a try (rather than just acting as a caddy). According to all reports, he was quite blind on the course and started off the day with a quadruple bogey. Somehow he turned it around and had the best score of the group!
Despite the cart to move him around, he was REALLY sore by the end of the round. I am hoping that he can get out again soon and begin building up his strength and endurance again. But first, we have to get over this eye thing.
Thanks to everyone for their encouragement, their prayers, and their e-mails!
Wednesday, July 21, 2010
Sorry that my "punny" husband got to pick today's title, but the news is finally good news! At our Tuesday afternoon appointment, the doctor was very pleased with what he saw in Tyler's left eye. Although he was hoping to see this level of improvement last Friday, we really didn't want to complain too much. No More Shots in the eye was enough for us to celebrate! Tyler REALLY splurged and ordered his drink of choice (Vanilla Latte with Light Ice) in the Venti size, instead of his normal Grande.
The doctor actually told us that Tyler's eye looked "less fluffy" on Tuesday (my pick for the title of this post), so I guess that is a good thing?! The ophthalmologist has been really good to work with, so we can't complain too much...
In addition, Tyler says that today (Wednesday) was the first day in which he has noticed any improvement in his eye in the last month that he has been fighting shingles. I am still pulling for golf to be possible on Friday, so we want to see more and more improvements on Thursday.
He is dealing with severe itching and some pain from the rest of his head. If you remember fighting chicken pox, then you probably know how strong the urge to scratch can be! Shingles is actually the reactivation of the chicken pox virus, although it doesn't manifest itself in the same way.
Thanks for the encouragement and well wishes. Tyler and I both appreciate the support that we receive from coworkers, friends, and family members.
Sunday, July 18, 2010
After our ER visit, we were scheduled for a follow up visit with an opthamologist to be certain that the shingles infection did not move into his eye. Unfortunately, at our appointment on Tuesday, the doctors did see signs of infection inside Tyler's eye. What I thought would be a quick 1 hour visit turned into a 6 hour appointment with both the corneal specialist and a retinal specialist.
They took pictures of his eye to identify the location of the infection and monitor the progress over time. The retinal specialist told u that we would get to know each other REALLY well, as we will be seeing him quite a bit for the next 3-4 months. Right now, the infection is just around the outer edges of his eye. If the infection progresses into the center of the eye, that is very dangerous. We also have to watch out for retinal detachment right now, so they are monitoring his eye pressure along with the inflammation.
The worst part of the appointment was the antiviral shot that Tyler had to get. They winched his eye open and shot medicine into the back of the eye to attack the infection. They also extracted some fluid from the eye to make sure the infection they see was actually shingles. Tyler says this was the most painful thing he has ever experienced, which made my heart hurt, as I have seen how much pain he has endured in the past 3 years.
The eye doctor upped Tyler's dosage of Valacyclovir from 3 pills a day to 6 pills today, so I got to spend most of a day on the phone with the doctor's office, the pharmacy, and the insurance company trying to make that happen. We are exceedingly frustrated that it is so difficult to get medicine that is medically necessary. Tyler is at risk of going blind if we can't get this infection under control, but the insurance company doesn't want to pay for the dosage the doctor has prescribed because the medicine is expensive. Grrr... I HATE dealing with insurance issues!
We had a follow up appointment with the eye doctor at the end of the week. Upon inspection they thought the infection had stayed the same, but the pictures showed a small increase in infected areas. If he had stayed the same or improved, they would have sent us home. Since it got worse, Tyler had to endure another shot in the eye. The doctor considered admitting him to the hospital, to treat the eye with IV medicines, but decided that he would see if the shot was sufficient for now. We have another appointment on Tuesday to see if any progress has been made.
Tyler has been invited to go golfing on Friday, so I am REALLY hoping that his eye improves enough that 1) we don't have to see the doctor that day and 2) his light sensitivity has improved enough to allow him to go outside again. Despite the beautiful weather here, we have been living in a cave trying to keep the light to a minimum in the house.
Please wish us luck for all of our events on Tuesday!
Saturday, July 10, 2010
My friend and coworker had her transplant on Friday, July 2nd. We remember how painful those first few weeks were and wish her strength to get through it and a very quick (and healthy) engraftment!
If you are curious to see more about Janell's journey, you can click on the link to Janell's Reflections on our website.
When Tyler was diagnosed with shingles, just after Father's Day, he was given a 7-day course of an antiviral medicine called Valacyclovir. After a couple days of sleeping with pain pills, Tyler finally started to improve. Unfortunately, once the medicine ran out, he gradually got worse again. While the pain was bad, we were actually more concerned about his sensitivity to light, blurred vision, and the feeling that something was scraping inside his eye.
So... We ended up in the ER on July 3rd, waiting to see an opthalmologist who could evaluate the permanent risks to Tyler's vision. Thankfully, the eye doctors thought that his eye was only minimally infected. The ER doctor prescribed another 7 day course of Valacyclovir and the opthalmologists prescribed some eye drops to relieve the swelling in his eye.
Interestingly (and somewhat sad), the eye doctors indicated that this was a REALLY big weekend in their field. When we continued to look at them blankly, they explained that eyes and hands are the most frequent injuries of fireworks escapades. One doctor even said "it was the Superbowl of their field." Oops! Hopefully all of you were safe for Independence Day!
After fighting with our insurance company Sunday through Wednesday, we were finally able to fill the prescription and get Tyler on the right path again. He still has pain and sensitivity to light, but actually noticed some improvement yesterday. I am worried that this 7 day course will not be enough to get him OVER this bout with shingles and am not looking forward to yet another fight with the insurance company to get them to pay for the medicine he needs.
Wednesday, June 23, 2010
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.
Tuesday, June 22, 2010
Tyler suffered a setback in his health this weekend. It appears that his body got bored with feeling good, so he has developed shingles. I thought he just didn't want to spend Father's Day with me, but seeing the blisters all over the right side of his head has kind of cured me of that notion.
He is truly miserable, as he has large blisters from his left eye all of the way back on his head and a huge amount of pain. He's basically been sleeping for the last couple of days. The worst part of it is the blistering in his eye and the fear that his vision might be affected.
I hope that the blisters crust over soon, so that he is no longer contagious, and the pain begins to fade.
Wednesday, June 16, 2010
I have heard from a few readers that they had trouble ordering this month's Cards for a Cause through the links on the blog. If you have tried but had challenges, you can send me the number of cards that you want of each type to bledsoewedding _at_ hotmail _dot_ com. You can actually place your order directly with me by e-mail if you want. Then you can mail me a check, if you prefer that payment instead of an online credit card or Paypal. Sorry for the funny format on the e-mail address, but I want to avoid as much spam as I can!
Sunday, June 13, 2010
With all of the craziness this spring, I had gotten far behind in shipping out the cards for a cause that everyone had purchased. Now that I am finally caught up, I wanted to post the June card (and a bonus card option since I missed May's card).
To purchase the June cards, please click on the Add to Cart buttons. If you receive our post via e-mail, you can reply to the e-mail with the number of cards you want. If you see us in person, you can also just give us a check or cash for your cards.
Also, I've got other sentiments that can be used on these cards, if you want something other than birthday cards! You can use the notes section to tell me what combination of cards and messages you want, or contact me directly with your requests.
Thanks for helping us to continue our fundraising for the Leukemia and Lymphoma Society!
Tuesday, June 8, 2010
Last week, at Tyler's clinic visit our doctor said that Tyler is outperforming every expectation she had of him! He was in the running for a spot on the Ariad trial, but was beat out by one of the other candidates. Our doctor says that if the Ariad folks could just see Tyler, they wouldn't be so concerned about his recent health challenges being a risk on the trial. With that in mind, Tyler is going to Portland today with Hans and I have offered to fly him to Massachusetts to meet with the drug company directly. ;)
Actually, we are pleased to say that he has actually been able to start golfing on short courses again. He's pretty worn out after all of the walking to and from the cart, but is improving with the ability to exercise again. He's got good color back in his face and his normal vigor is apparent when you spend time with him.
His blood counts continue to improve and he is beginning to branch out and eat a larger variety foods. I have even started up with the "honey do" list again. :)
Thank you for your continued encouragement. Many people have e-mailed us to celebrate the recent good news and we sincerely appreciate all of your encouragement in both the good times and the dark times. Our current prayers are targeted at finding a treatment option that Tyler can qualify for that will make a difference in his long term survival! We are 3 years into our battle and I am amazed to see how much we have been through so far. We absolutely could not have made it this far without the outstanding support we receive from coworkers, friends, and family.
We hope to see some of you soon!
Sunday, May 30, 2010
Tyler's blood counts on Saturday morning proved that he has broken through his glass ceiling. His total white blood cell count (WBC) was 1.0 and over half of those were neutrophils (ANC)! With a ANC of more than 500, Tyler is less at risk for major infections. He gets to drop two of his antibiotics, so he has fewer pills to take.
There isn't too much change other than that, but we are celebrating by taking a 3 day weekend!
Thursday, May 27, 2010
Great news from today's doctor appointment! Tyler's neutrophil count is up to 420! Once he gets over 500 neutrophils, he will get to cut down on some medications and eliminate some of his current activity restrictions.
He is feeling pretty good and starting to add more foods into his diet. His doctor says that Tyler can try to start getting some exercise, so he'll be working on that too.
Monday, May 24, 2010
My wife informs me that my friends and family may want to hear from me, and I agree. Ive been home almost a week now, and for the most part things have gone pretty smoothly. I had to go into SCCA on saturday for platelets, but I actually had made a couple on my own....a really good sign! My next blood test will be on thursday, and hopefully my WBC count and neutophils will have increased. Right now I have to be pretty careful about what I eat, and I have to avoid situations that could cause me to get sick or get some sort of infection. Ive been out once to play golf at the driving range chip and putt course, and for the next few weeks/months that may be all Im able to do while my Hickman central catheter is attached.
Sleeping has been a bit of a struggle with my mouth still producing quite a bit of saliva. I have to tote a spit cup around with me wherever I go. I can still only eat soft or liquid type foods like soups, mac n cheese, yogurt, etc...Mandy makes some really good smoothies also which add some good protein. As always Mandy and my mom have been incredible lookin out for me, and making sure I do the right things. I know Mandy really wants me to get out and visit, but I really need to wait until my neutrophil count is at least 500. Neutrophils are the most healing part of the WBC and right now my overall count of WBC is 360 with neutophils at 130 as of this last saturday.
Until I can get these counts to increase Im kind of trapped at home, and ocsssionally get pretty bored. Mandy has given me a honey dew list, but none of the items on the list seem much fun :).......but they are things that need to be done. I watch my golf on thur-sun in the afternoon, and keep an eye on my fantasy baseball team. Doing much better with golf than b-ball right now. Im hoping to get out with some friends, dad and brother to either play at the par 2 course or even get out and watch from a cart if anyone wants to play a round of golf. I can pay a trail fee, and be a caddy until I can take full swings again.
I want to thank everyone for your continued support, amazing comments, and I have to tell you that it really helps! My time in the hospital was about what we expected with some pretty tough moments with the first few days losing lots of blood, and a few weeks of mucositis. Fortunately it wasnt as difficult as back in 2008. We have a few options for our next course of action including another transplant.....this time with my mom. If that were to happen I may be one of less than 5 in the world to have received marrow from both parents. I guess thats okay....I love them both very much, though I would prefer to live through them in a much different way. In the next few weeks after my counts get better, we will begin to formulate our next course of action and hopefully my marrow, spinal fluid, and blood remain clear of any disease. It is very likely it will come back at some point, so the goal is to get our plans in order before it attacks again.
Its been far too long that Ive posted, and hope to do a better job in the near future. Take care and I hope everyone is enjoying this late spring/early summer approaching!
Thursday, May 20, 2010
I recently read an article about some research on combining Gleevec with another drug completely obliterate leukemia. As we look for treatment options for Tyler, I can't help but wondering if something like this would be a good option...
Tuesday, May 18, 2010
This morning, the doctors asked Tyler when he wanted to go home. Tyler said "tomorrow," so they spent all of Tuesday preparing Tyler for a Wednesday departure. Can you believe it?
After a long voyage through "Oz", Tyler is finally on the Yellow Brick Road towards home!! Farewell, UWMC!
Saturday, May 15, 2010
The doctors gave us the best news today! Tyler FINALLY had white blood cells! He had .110 count today, with the normal range being about 4.3 - 10.0. It's a small amount, but definitely a step in the right direction. Now that he has white blood cells coming in, his healing should actually speed up too.
He's had a decrease in the pain in his sides too, so we are dancing in the halls of UWMC!
Friday, May 14, 2010
Today marks the last day of our first month in the hospital. We were prepared to stay this long, but hoped that it would prove true. There is still no sign of white blood cells (WBC), which is one of the things keeping us here. I checked the blog history and found that Tyler's first brush with induction therapy had us waiting 2.5 weeks from the end of chemo for the WBC to return. We are just a little bit over 3.5 weeks now, although it seems much longer. Since the body is much more sensitive to treatments after a bone marrow transplant, this is not totally unexpected.
Tyler had another MRI on Tuesday, so I have been anxiously awaiting the results so that I had something to post about. The doctors said that his marrow looks like it has more fat in it now (I didn't know you had fat in your marrow), but the chloromas are still there. We were hoping that they had reduced in size after the potent treatment Tyler had last month.
On the upside, he has had a series of relatively good days recently. He had been flirting with beverages for the last few days (juice, jello, smoothies, milkshakes), but today he branched out into the territory of Cream of Wheat and ENJOYED IT! He says eating or drinking cold things causes his throat to sting, but the cream of wheat slid right down without any pain. I'm delighted that he had a good breakfast!
Sunday, May 9, 2010
I don't know why, but this morning I seem to be throwing a temper tantrum. It's just not FAIR!
While I am thankful for the many blessings in our lives, I am also envious of those being denied to us right now. The simple pleasures of sleeping in our own home or eating a meal together seem so very precious when they are denied. We are approaching the end of a month solid in the hospital and are both extremely tired of this. Tyler can hardly sleep at night because of worries that he will choke on his own saliva.
We really just want to live a normal life! In fact, boring sounds quite wonderful...
Thank goodness we had a year or two together before we got married, as our entire marriage has been overshadowed by this darn battle with leukemia. Sometimes we can forget about it for awhile, when Tyler is feeling good and strong. But it seems like we are always drawn back with a new outbreak. In fact, those relapses seems to happen anytime I want to travel.... Do you think Tyler is trying to tell me in a subtle way that he doesn't want to travel as much as I do?
I am envious of the family and friends who have started families of their own and are watching their children grow. We would love to have a family, but treatments have made that unlikely without adoption and our lives are really too crazy right now to add more complications in...
Tyler is sick of being stuck in the same room, mostly in bed, every day. I am sick of wrestling with whether or not I am making the wrong choice every time I am doing something other than being with him in the hospital.
I know everybody has their own demons and that no life is as easy as it looks. But for today... I am thoroughly disgusted with our personal battle and would love to call a cease fire for a few years (or decades?!).
Tuesday, May 4, 2010
Tyler got the rest of his hair shaved off today. He actually picked all of his facial hair off last week, eliminating the need to shave. He had a really great attitude about it, but I think that losing your hair must be a little bit hard on any cancer patient. It is the most visible sign to the world that you HAVE cancer or are sick.
Luckily Tyler has a really nice head and looks as good bald as he does with hair! I"ll try to post a picture of him soon.
Still no signs of those pesky white blood cells!