uncertainty

Today we received the news that it is very unlikely that my brother will be a match. They have done preliminary typing, and it appears he wont be able to be my donor. They now wish to have my parents typed to prepare for a potential transplant with them if my situation becomes dire. Parents are usually a guaranteed half match, unless over time cells have altered or certain anomalies occur. This doesnt seem to me to be my best option, but may become my only option if we need to rush to transplant.

I am hoping that the Tasigna will improve my current health to the point where that option can stay on the back burner. We will most likely have them begin the unrelated donor search now so that remains an option also.

My blood results today for those following:

WBC 13.8
RBC 28.8
Platelets 24 (they transfuse at less than 20)

I will need to go in tomorrow for another blood draw to see if my platelets drop below 20

The doctor also has me scheduled for a bone marrow aspiration on friday to see where I am at with the recent acceleration of Leukemic cells.

The good news is that I feel good, energized, and ready to take on whatever comes my way. This really sucks, but I have to face it and so I will! I will most likely update on friday when we have gathered more information about the next steps.

Tyler

Tyler Gets the Day Off!

For the first day in a long while, Tyler gets a day off from the doctor's office tomorrow! His blood draw today showed improvement in his counts, so we have great hopes that the Tasigna is doing its job.

WBC: 11.8 (Hooray!! It's almost in normal ranges of 4.8-10.8)
HCT: 30.6 (Those donated blood cells that Tyler received Friday are doing their job)
PLT: 33 (Although the normal range is 150-400, we're happy about this because it means no platelet transfusion needed, since he was as 33 on Friday too)

I'm scheduled to head to the Stampin' Up! convention in Salt Lake City this weekend, so will miss the rest of the week with Tyler. My trip has been planned since April, and I was worried that I would have to cancel if he didn't get better. It's such a relief, though, to have Tyler feeling more like himself. Since his last visit to Sequim was cut short, Ty is planning to head over to his mom's house and spend a few more days with her while I am gone.

Now that he is feeling better, we are hoping to see some of the friends we haven't had a chance to see recently.

We also want to wish a very happy birthday to Ariel (Tyler's niece), who allowed us to entertain her last night at her 4 year old birthday party!

waiting......

I have been feeling sick for a little over two weeks now, and havnt been able to work. I have has an IV hooked up to my left and right hand and now my left forearm in order to give me daily IV treatments at Puget Sound Cancer Center. The people there are wonderful and take great care of me. I received 2 units of red blood cells on friday at Stevens Hospital, and it took about 5 hours to get inside me but I felt a lot better afterwards.

I started taking my new medicine on friday evening and havnt had any new side effects that Ive noticed. This week we will be waiting to hear from Seattle Cancer Care Alliance as to whether or not my brother and I are a match for the transplant. We are praying that he will be to keep the costs down for the total transplant. I have a $250,000 maximum coverage on my policy, and weve been quoted 2 different prices for transplant so far. $311,000 if its my brother and I, and $380,000 if its an unrelated donor.

We have been holding back from asking people to donate to the Leukemia & Lymphoma society and Light the Night, because we werent sure if we would need to raise money for a transplant for me directly. We are so thankful to all those that have donated in the past, recently, and those who will donate in the future. If possible we would ask that any donations go to us directly for the transplant instead of to Light the Night or the Leukemia & Lymphoma society. Mandy has created a PayPal link on this webpage for those that wish to help that way.

I feel my resolve growing stronger as I prepare for this battle, and I couldnt be with a more caring and loving partner! She is very strong but I know she will appreciate any support from friends and family throughout my transplant and recovery. Mandy has been a pillar of strength for me, and I hope that I am and will be the same for her. Its hard to respond to all the nice messages and caring thoughts from everyone.........but I want everyone to know that they mean the world to me right now. It has been very difficult for me to talk with sores in my mouth and just feeling rotten all the time, but I think I am on the mend now and hope to be able to chat it up with all soon. In the meantime please know that I am positive that I will get through this, and that I love you all!

Take care,

Tyler

some good news.......maybe?

Today was hopefully a beginning to a run of better news for Mandy and I. We dont have anything in writing yet, but I talked to a case manager with Premera this morning and it appears that they will have to cover part of the transplant. Because Seattle Cancer Care Alliance/Fred Hutch/UW are the only provider for allogenic stem cell transplants, they have to provide coverage since it is a unique qualifying event.

Now, that made us smile quite a bit today but I also know not to get overly excited until we get this in writing and the HLA blood typing for Gump and I is underway. My doctor has also recommended that we switch medications to get me into a better position for transplant. We hope to get this process underway immediately, and if Gump is a match.....I may be ready for transplant around end of September or early October.

I am still sick as my immune system is fighting, but it is fighting several things. It is fighting the recurring Leukemia, my respiratory issues, fever, and who knows what else? Basically, I have been sick for about 2 weeks straight now, and I am sick of being sick! I tried to get out of the house, and spend time with mom in Sequim. I was able to get away for a day and a half, play some cards and even got in some golf! I was able to finish 18 holes with a cart, but my calves, knees and forearms have been extremely sore since then! Hopefully my new medicine will get my immune system back into shape in the next week or two.

We will let you know more as we go.

Tyler

Another curveball

We were thrown another curveball today when the Seattle Cancer Care Alliance folks called to say they couldn't get authorization to start the typing process with Gump and Tyler's blood because the insurance company would not pay for it. Apparently Fred Hutchinson and the Seattle Cancer Care Alliance are not "preferred providers" for Tyler's insurance plan.

We're scrambling to find out what our options are because we need to get this process going as soon as we can. The surgery was quoted in the $300,000 - 400,000 range, so it would be steep for us to cover without insurance assistance. Please wish us luck as we navigate the world of insurance and charitable foundations and whatever other financial worlds we need to investigate.

After Friday's bone marrow results told us that Tyler's leukemia is getting out of control, we are anxious to get moving towards a more long term cure. They've upped Tyler's Sprycel dosage to 110mg per day and added Hydrea to the mix to bring his too high White Blood cell count back down into normal ranges. His Monday blood test showed that everything had stayed about the same over the weekend, which was okay for now. We're hoping for a better mix of numbers on Thursday at the next blood test.

Tyler is commuting to the doctor's office from Sequim this week to get daily IV's of antibiotics. It takes about 30 minutes for his IV, but the commute is lovely and the company is great over in Sequim, so it's probably still worth it.

It's been one heck of a July for us and we are both looking for some good news pretty quickly here. Thanks for the great response in posting comments here to let us know you are thinking of us, for joining the NMDP to see if your marrow or stem cells could help someone like us, for praying for Tyler's health. We feel very loved this week!!

Here's hoping I have better news for my next post...

Mandy

Did You Join the Club?

If you joined the National Marrow Donor Registry, we would love for you to let us know. Post a comment below to let us know you are a member of this club!

Joining the National Marrow Donor Registry

How Can I Join the Registry?

If you live in Western Washington or Alaska and would like to join the national Registry, contact the Puget Sound Blood Center at bonemarrow@psbc.org or 206-292-1897 or 1-800-DONATE1 x1897 for more information.

As an alternative, you can print the Donor Registration and Consent for HLA Typing form. Complete the form, sign it, and bring to any Puget Sound Blood Center donation center or mobile blood drive.

Once your sample has been provided, a Bone Marrow Donor Program staff member will contact you for additional information or typing fee payment, if necessary.

If you live in another area of the United States, call the National Marrow Donor Program at 1-800-MARROW-2 or visit the website at National Marrow Donor Registry at http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html. My aunt, Cyndie, checked this out and had the following information to share:

For those of you outside of Puget sound this is the web site you can sign up immediately and they will send the swab kit to you. You need addresses and phone numbers of 2 closest relatives and can charge it online with your debit card.

I also found a link about what happens if you are selected as a donor match. There are two methods of collection: Marrow or Peripheral Blood Stem Cell (PBSC). You can always choose whether or not you wish to donate in a specific case, but the intent of the registry is to be willing to donate as often as health and circumstances allow. For more information about the donation and recovery proces, please visit the National Marrow Donor Registry's page about Steps of Bone Marrow & PBSC Donation

Give Me the Good Stuff

After months of a "no drinking" lifestyle, Tyler finally got the good stuff today. Dr. M needed to get a sample of Tyler's bone marrow to get a better idea of what exactly is going on inside there. Tyler opted for conscious sedation for the first time and we've concluded THAT is the way to go if you ever have to give up some bone marrow.

They filled Tyler up with a custom cocktail, guaranteed to make him drowsy but not completely knock him out. His memories are pretty foggy, so I could post whatever stories I want about what happened during his hour of sedation without Tyler being able to defend himself. Unfortunately, I can't share all of the details because he'll surely find some way to pay me back if I spread too many rumors. Although... we did talk about Tyler going to nursing school so that he could give me nightly injections of the same cocktail so that I have an easier time sleeping. :)

The Bone Marrow sample looks much like blood when the pull it out, which really surprised me the first time. This time they put the needle in his hip and withdrew a sample from there. The goal of this aspiration is to see if Tyler's abnormal cells are behaving themselves within the marrow or if we need to consider a new drug for his daily treatment. In addition, Dr Bedalov wanted to get a look at the bone marrow results to see what was going on there.

As an observer, I must admit it was fascinating to watch Tyler snoring and then hear him answer a question and then continue snoring. He was sleeping and yet not sleeping at the same time. Overall, today's appointment was MUCH better than yesterday's appointments. We're still staggered by the bad news that we faced yesterday, but doing better.

After the bone marrow aspiration, Tyler got an IV of antibiotics to help fight his crud (cold or bronchitis or whatever) and then we headed home. Dr. M and Debbie and Edna make this battle a little bit easier with their attitudes and their compassion.

I snuck off to work for a few hours, which was a good thing because it was incredibly busy once I got there.

As for yesterday, we are just waiting for Tyler's typing and Gumper's typing to be complete. If they are a match, we look to be headed towards surgery next month. Personally, I would prefer about 6 months of time between now and the surgery (to get more prepared)... But it doesn't look like we will get that chance. We will just have to make the best of a rotten situation.

Thanks to everyone who has already told me that they are getting typed for the National Marrow Donor Registry! I can count 8 others who are planning to join the registry and another one who is already on the registry. THANKS!!!

Mandy

Too Worn Out for a Long Post

Today, Tyler and I met with Dr Tony Bedalov from the Seattle Cancer Care Alliance. The net result of the meeting today was that he recommends we proceed with a stem cell/bone marrow transplant as soon as possible. We are both discouraged after a long day of bad news, so we have decided to take the evening off. But... I know several folks are waiting to hear news about our appointment today, so I wanted to post the highlights at least.

Tyler and Gump both gave blood today to begin the process of determining whether or not they are a match in tissue types. There is about a 25% chance that they will match. If they do, we have been advised that Tyler could begin the transplant process as early as mid-August.

If they don't match, we will turn to the National Marrow Donor Registry program to see if we can find a match there. If we have to go this route, we will have more of a delay while finding a match.

I signed up for the National Marrow Donor Registry today and feel really good about having completed that step. It was incredibly easy (once the Blood Bank folks found the forms for me to complete). I basically rubbed my cheek with a Q-tip 4 times in a row and filled out a form. If you have been thinking about helping us out (or doing something in Tyler's honor), I urge you to contact your local blood bank to sign up yourself.

We'll try to post more details later, but... for now... It looks like we'll be experiencing a transplant this fall.

Mandy

Eat Out benefit for LTN/LLS‏

Bristol Myers Squibb (BMS) is the national sponsor for the Leukemia and Lymphoma Society's (LLS) "Light the Night" (LTN) event. To kick off their local fund raising for "Light the Night" this year, they have coordinated with Lombardi's Italian Restaurant in Ballard to donate 20% of their profits to LLS. Please bring your family and friends out to dinner on Monday July 28th to benefit a great cause and help support the Bristol Myers Squibb Seattle "Light the Night" walk team.


Monday July 28th

Lombardi's Italian Restaurant
2200 NW Market Street
Seattle, WA 98107
(206)783-0055

Time: 5:00pm-closing
Please mention the Leukemia and Lymphoma Society or Light the Night

Worried now

Tyler's had a rough week, with the exception of his best round of golf ever on Tuesday night. After the golf, he noticed that his ankle was a little bit swollen. He couldn't remember hurting, except for a minor tweak about a week ago. The swelling was worse on Wednesday, so he asked the nurses about it when he went in for his blood test. They weren't overly concerned about the swelling, but were a little bit worried about the red color of it. They advised him to get off his feet, with ice and elevation to follow.

His blood test results were also disappointing:

WBC: 7.3
HCT: 28.3
PLT: 106

I'm worried that we might be seeing another blast crisis, so it is hard to feel comfortable right now.

Tyler stayed home from work today, to rest his ankle, but feels worse tonight than he did this morning. He's got a sore throat and cough tonight that weren't present before.

We're scheduled for our big appointment at Fred Hutch next Wednesday and then an appointment with Dr M. If he gets much worse, we'll probably try to get him in to the doctor tomorrow and not wait the full week. He just feels so poorly that it is reminiscent of his last two hospitalizations. I truly hope he doesn't have to have more drastic care, but I am not feeling too optimistic tonight.

We'll post more when we know more...

Test Results

Today's blood test results were:

WBC: 4.3
HCT: 27.9
PLT: 124

He lost a little ground in the Platelets and Hematocrit, so that is disappointing. On the upside, he was feeling okay at work today. We are hoping that a recent change in his medication will help his counts pick up over the next few weeks. If not, a stem cell transplant seems like it might be our best bet.

Fred Hutch Consult is scheduled

Tyler now has his consultation at Fred Hutch scheduled for July 16th. It appears we'll be down there for about 3 hours that day talking to a doctor, a nurse, and a financial counselor. It's scary to think about all that must be covered, but hopefully the meetings are productive and we know much more after talking to the folks down there. The materials they sent us said they perform over 400 transplants each year at Fred Hutch, so they are experienced with this. That still seems like a pretty small number to me but they also invented the idea, so they definitely have some expertise.

We will be meeting with Dr. Tony Bedalov from their staff.