Home again!

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.

Another infection

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.

Breathe In, Breathe Out

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!

My Fantasy Guy

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.

Breaking the Barrier

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.

Mr. Snuffleupagus

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.

How Donors are Selected

How Donors Are Selected


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

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



A close match

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

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



Next step

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

The Need for Donors

Finding a match: The basics

 

For a successful transplant, a patient needs a matching donor. Special testing determines whether a patient and a bone marrow donor or umbilical cord blood are a good match. The closer the match, the less likely the patient will experience severe Graft - vs - Host Disease (GVHD).

 

 

Race and ethnicity matter
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.

 

Your heritage can make all the difference. If you are from one of the following communities, you are especially encouraged to join the Be The Match Registry or donate umbilical cord blood:

• 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 can even join from the comfort of your own home, by completing an online form and using the kit they send you to swab a Qtip around the inside of your cheeks.  It only takes a minute or two to join the registry!  The major requirements are:

• 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

Get more questions answered online here if you still want to know more.

Shop to the Gap Give & Get sale and help fight cancer!

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!

Foot Drop

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.

Tyler

Ty-fighters.......Day 8/Cycle 2

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!!

Tyler