Just Do Your Shopping

Did you know that you can help us raise funds for Tyler's surgery, just by doing your regular shopping? We have signed up as Amazon Associates, in hopes that friends and family will link to the Amazon website and help us raise a little bit of money that way.

An example would be a purchase of Amazon Gift Cards this month. Any purchase of Amazon Gift Cards in the month of August, earns 10% of the purchase price towards Tyler's surgery. How's that for convenience?

Thanks for all that you are doing to help! We appreciate it!

Do You Know Anyone in California?

My friend, Megan, sent the following information for any folks in California that are looking to join the Bone Marrow Donor Registry program:

If there is anyone on your list that lives in CA - the website
www.bloodsource.org will give a listing of facilities and/or events that
waive the fee for getting the test....

Thanks, Mega!!

Big Decision

As weve come to the end of the week, we have been asked to make a big decision by SCCA(Seattle Cancer Care Alliance). Yesterday afternoon, I spoke with a Dr. Paul O'Donnell at SCCA and we had quite a difficult conversation about where my HLA tissue typing was at with regards to my brother and any potential unrelated donor. He very straightforwardly, and in my opinion very rudely mentioned over the phone that there was "no" chance of finding an unrelated donor for me, and that my brother was also not a good enough match for transplant. The afternoon before they hadnt even begun a tissue typing search, so this news was very upsetting and startling to say the least.

As the conversation progressed I came to find out that he was under the impression from a July 16th consult at their facility that I was in "Blast crisis". I realized at that point that I needed to have my physician speak with him to straighten out this misconception because I am in fact not in blast crisis. I also came to find out from this conversation yesterday for the first time, that they had already slated me for a transplant time slot beginning on August 21st (registered into their system), pre-conditioning on a special antibody (mid-september) and transplant on October 1st. They also have wanted me to specifically be involved in a HAPLO transplant which involves a family member that is not a full match. Without speaking to us at all, they had done all this in preparation for a transplant for me.

I have had the gut feeling all along that they would try to get me into this particular antibody regimen for this type of transplant and have had a very leery feeling about all of it. Well, through what I consider to be a massive set of coincidences, I just happen to fit all of their criteria to get to this particular type of transplant because my brother is supposedly not a match and they informed me that there is no chance of finding an unrelated donor. Phhewwwwww....okay

After speaking with my doctor yesterday afternoon, some things were straightened out about my current health status which is much better than they had thought. However, they put us in a position yesterday where we had to decide by today if I want to be entered into their system for this particular procedure which would all get started on August 21st commencing with a transplant on October 1st. They told us that they had reserved this antibody for me, but that someone else needs it if I decided not to start the process at this time.

As you can tell from my writing, I have been skeptical about most of this for awhile but from what they have told us I must decide to do this now or wait until November when the next antibody regimen of this type is processed. Apparently they can only produce so much at a time.

We still dont know if my parents or my sister Elizabeth will match my tissue typing (HLA tissue typing), but they will be going down to have their blood drawn next tuesday and their tissue typing will begin. If none of them are a match, there is a strong likelihood that there will be no transplant at all. I would have to rely on my current medicine to work for me, and/or hope that a newer technology or better medicines come along if this one fails also.

My gut instincts for this big decision told me that I dont trust what they have been telling us and I would rather wait especially considering that I have been improving with all my counts on my new medicine, and that someone else may really need this antibody.

After thinking about it over the last 24 hours, and listening to the wisdom of Dr. McGee I decided that it would be in my best interest to not risk anything and to get to that transplant as soon as possible which would be the October 1st date if I say I want this current antibody they have prepared. His points were that there is very little guarantee that my new medicine will be working well enough in 3 months to allow me to be in good enough shape for transplant in November/first part of December. We now need to pray that my father, mother or Elizabeth will be enough of a match to do the procedure.

The procedure is called a HAPLO transplant (mismatched family transplant), and I found lots of great information by just googling HAPLO transplant and searching around. We will probably be meeting with them next week or sometime soon at least to discuss the procedure and all other details including caregiver duties, etc....

On top of all this, today I had to have my blood drawn again to see how I am doing on the new medicine.....Good news, numbers still improving. We had to do an EKG for my heart, because the new medicine Im taking has shown to be an issue in heart irregularities for some patients. Good news........my heart is working great. All my vitals have been great over the last year and a half through all this with my blood pressure, oxygen levels, pulse, lung functioning, etc....Lastly, I had to do a bone marrow aspiration today so that we can continue to monitor where this recent acceleration of Leukemic cells is at. If the numbers are going down, that will be more good news but we wont know until the middle of next week about my marrow.

I really have run out of thoughts for now. Mom is home and its time to eat some fish n chips!! I love you all, and will continue to update whenever possible.

Tyler

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