Settling In

Our week down at SCCA was much easier this week with regards to appointments, blood draws, etc.....I did have to get a red blood cell transfusion on tuesday night, and may need a few more between now and the transplant. For some reason my red blood cells have been not living as long as they should in my system. We took a few classes to get us more familiar with what we can expect during and after the transplant.

During the first week of my CML diagnosis in Feb. 07 I had an overwhelming sense of security come over me about a day and a half after my diagnosis. I just went from feeling sorry for myself, and angry, and miserable, and upset to ..........these people are now taking care of me, and I am going to get better! I had the same feeling come over me this week as we walked into the building. None of what I or my caregivers are going through is much fun at all, but we are preparing for a huge battle. I have reached a point where despite what Im going through........I know that my strength and the strength of my supporters will get me through this battle.

It will be an extremely difficult period of time to get through with all the medications and chemotherapy treatments I will be taking, but the purpose is to eliminate the Leukemia with the idea that it will not come back. The transplant process and the treatment regimen is somewhat complicated and I wont go into details at this point, but I promise to do my best to relay how I am feeling and what is happening during the process.

I cant even start to explain how important all of the support has been for me, but it has been extremely important! I am overwhelmed actually with how much support we have received, and will never forget it! I look forward to seeing everyone at the auction, and perhaps some of you sooner or after.

My new medicine I have been taking for about 5 weeks now has put me back into pretty good shape overall, but as has happened before the medicines have only worked temporarily. Even my nurse at SCCA is a little surprised at how well I am looking at this point. The better condition I am in at transplant day, the better the proposition for success during and after transplant. So that is the goal, and we are working very hard to be in excellent condition the first week of October.

Tyler

Dinner/Auction Tickets are available for purchase

You can now purchase tickets to the Dinner Auction on September 12th by visiting our event ticketing website at http://bledsoebattle.eventbrite.com. Any interested parties can also register by mailing a check. Please make your check payble to "Amanda Bledsoe FBO Tyler Bledsoe" and mail to Cynthia Loland, 21516 NE 159th Street, Woodinville, WA 98077. Please include a phone number, address, and e-mail (if they have one) so that we can confirm with you that we have you booked!

More Poking, More Prodding

It's amazing how many different tests can be run on a single individual in the span of a week. On Monday, we met with a pharmacist and a nutritionist. Both evaluated our lifestyle up until this point and then gave us information about things to expect post transplant. For example, Tyler has to avoid Brie and Feta and Cream Cheese for about a year as part of his immunosuppressed diet. We were pleased to learn that he can still dine out (with friends or in restaurants) as long as food safety guidelines are followed.

The pharmacist will be helping us to manage the schedule of medications, so that each is the most effective. I have already been struggling with Tyler's Tasigna as it must be taken twice per day, 1-2 hours away from any food. Tyler has done fabulous with that, but I get stressed out by the thought of having to plan out our meal times. Do you think that I'm a little too focused on my meals? In any case, the number of medications and the restrictions on when they can be taken will increase significantly starting the week before the transplant.

On Tuesday, we attended caregiver classes. Andrea (Tyler's mom), Tud (Tyler's grandmother), Kate (Tyler's stepmother), and Gump (Tyler's brother) all joined us in learning how to properly prepare foods and what to expect in caring for Tyler at home. One of the most exciting things I learned was that we will not have to go into full isolation post transplant. We will definitely have to take extra precautions, but we can get together with friends or go out to eat. We will need to avoid crowds, sick people, and pets during Tyler's recovery, but we can still have a life. We will still be laying low, because Tyler's energy will probably not be back up to normal for the first year, but can enjoy so much more of life than I was expecting.

After our 3 hours of classes on Tuesday, Tyler had to get a couple units of red blood cells to bring his counts up a little bit. He had been so anemic, that his heart and head would pound after climbing the stairs in our home. The doctors are watching all of that carefully and plan to give him a transfusion if his HCT drops below 26.0.

I went to work on Wednesday, so I will have to let Tyler fill you in on that day of testing.

Thursday is a day off, thanks to a fabulous scheduler. When we were at the SCCA on Monday, the scheduler brought us a revised schedule that had added a new appointment to Thursday (which had been an empty day initially). We asked him if there was any possibility of changing the appointment he had just scheduled to any other day of the week. The scheduler went back, worked his magic, and somehow freed up Tyler's Thursday. I'm going to work and Tyler is going golfing today. It's good for the spirit to have a day away from the doctor!

And the Auction Begins

This is kind of a pre-auction item. We have 4 tickets for the August 27th, 1:40 pm Seattle Mariners game against the Minnesota Twins. We are looking to sell them and put the money towards the costs of the dinner/auction evening!

The seats are Section 142, Row 8, Seats 1-4. The listed value on them is $32/seat. Please let me know as soon as you can if you or someone you know is interested in them. You can check out the seat location at this link...
http://seattle.mariners.mlb.com/sea/ballpark/seating_pricing.jsp

I know the M's aren't having their best season, but the Twins are only 1/2 game back in the Central Division and they won today's game against Oakland. Post a comment to the blog or send me an e-mail at bledsoewedding@hotmail.com with your ticket bid.

Thanks!

Mandy

O Brother!

One of the stranger things that has happened during our appointments, blood draws, etc.... is that several times receptionists have referred to my father and I as brothers? Yes, this does concern me to the extent that I hope it is a compliment for my dad, and not an indication of my appearance. We have even needed to straighten them out a couple times as to which one of us was due for a blood draw or appointment.........mixups galore thus far! At the moment these mixups have been simple to solve, but we are certainly hoping they figure this out before the transplant! I have also been telling them to make sure they dont draw marrow from my dads funny bone........that could lead to me constantly hamming it up, coming up with puns all the time, and general goofiness!

Okay on to some more details about our visits. My appointments thus far have included 3 blood draws, an EKG, chest X-ray, pulmonary function test, dental exam, panoramic head X-ray (revealed nothing upstairs :o).....), history and physical, meeting with financial rep, meeting with social worker, meeting with attending physician to discuss transplant, IV hookup for blood draw followed by bone marrow aspiration (ouch), and finally a pretty cool test to see how my heart is functioning (called a MUGA test)........baseline for how my heart functions. All of us were pretty exhausted after all that, and are very excited to have the weekend now!

My father has had many appointments as well including several blood draws and many of the same physical checks as I. My dad was able to watch my bone marrow aspiration which gave him some indication as to how things will go, although they will be drawing about a quart of bone marrow from him, and his recovery process will be several days. It has been wonderful having so much support with me during my boring appointments, and we got through it in fairly good spirits.

Next week will be more of the same with possible blood transfusions if my counts are low (expected). We will be meeting with nutritionists, and be taking several classes to prepare us for the care-giving process. I will be starting a few new medications to prepare my body for the transplant, and we hope to be meeting the doctor who is in charge for this particular type of transplant with this particular antibody regimen so that we will feel more comfortable that this is actually the type of transplant we really want to proceed with. We are starting to feel more comfortable with the idea, but want to be completely confident that we are on the right track.

Tyler

Bledsoe Hospital Opening October 7th

The most amazing thing from yesterday's visit to the SCCA was learning that Tyler's transplant will be an OUTPATIENT procedure. Scott would be inpatient at UW for about a day, to recover from the marrow harvest, but Tyler would go home that very day. We are all still shock from that information and a little bit nervous. Andrea and I are not nurses by trade, so we have to be completely confident that we can support Tyler's needs during those most critical first weeks.

It's difficult to imagine that they can do such a serious procedure as an outpatient procedure, but we should learn more about that when we go to our caregiver classes next week.

Otherwise, yesterday was another full day of tests. Tyler had a lung test and an X-ray. We met with a social worker to make sure he was emotionally ready for such a surgery.

And, at the end of the day, we met with the current attending physician. The physicians rotate monthly, so we will likely see two more doctors by the time he has his transplant. We were pleased to see that the doctor we met with (Dr Collins) was the one we had met months ago when we initially toured Fred Hutch with the Light the Night folks. We had a very good meeting with him and got many of our questions about the procedure answered.

Day 1 at SCCA

Tyler is now officially a patient of the Seattle Cancer Care Alliance (SCCA). We're sad that we don't have more appointments with Dr. McGee until the end of January, but we are excited to be on the countdown to a new normal. If things go right, Tyler will be cured of his leukemia. Can you even imagine such a thing? I pray that is indeed the result we will get.

In any case, you are probably wondering about Day 1 at SCCA. Scott (Tyler's Dad and marrow donor), Andrea (Tyler's mom), Tyler, and I arrived at their clinic about 11am yesterday. Both of the guys had a 2 liter vial of blood drawn for their various blod test. Actually, it was more like 150cc, but the guys were both amazed at how much they saw filling up the vials. We decided fainting would not add to the experience, so we went and had lunch while waiting for our next appointment.

At 1pm, both men were called in for their physicals. Andrea and I waited in the reception area for about an hour and a half (note to self: take a book for the next visit) until they were done with their initial physical. Then Jackie, the Red Team RN, came to give us a tour of the locations we will be visiting over the next few weeks. We have a schedule for the current week of appointments, but nothing for the following week yet.

Thursday's appointment starts at 11am again, so we need to head out the door again pretty soon. Lunch options were slim yesterday, so I'm planning to research some more eateries that are close to our appointments.

More after our next appointments...

Life after Leukemia

A friend just reminded me of a very important thing and a news story that I would have missed, so I thought I would share:

People who endure these sorts of tests always seem to come back stronger. See Lance Armstrong; see, also, http://news.yahoo.com/s/nm/20080821/ts_nm/olympics_dc_294

I love to see stories like these!

Offers of Help

Tyler and I are very, very moved by the many offers of assistance that we have received. Thank you from the very bottom of our hearts! We could not be more amazed at the quality of people that surround us. We are looking forward to an opportunity to see many of you at the Dinner and Auction.

We have some friends that are coordinating fundraising efforts on our behalf, so we want to provide their contact information to you. Some events that have been discussed are: Dinner and Auction (Friday, September 12th), Poker Tournament, Lunch Out, Massage Benefit, Mini Golf Tournament. I can't promise that all of these events will actually get to happen, but some of them sounds like great fun.

Please send an email to Cynthia Loland at cynthp@hotmail.com if you or someone you know would like to be included in the planning part of this stuff. There are many things you can do to help, including searching out auction items, serving food, helping to set up the hall, organizing an event in your neighborhood, etc.

They are also collecting lists of people that want to be invited to the various events that are planned. Please also send those to cynthp@hotmail.com . We would love to see all friends and family there, but also ask you to think about bringing other friends, family, and coworkers that might be interested in a nice dinner out and some great bargains on some auction items. I've heard about all sorts of auction items being offered, so it sounds like there will be some really exciting things to bid on.

When sending them contact information (e-mails and phone numbers to start), be sure to let me know what list to put you on (volunteer or invitee).

Thank you again for the many offers of help and prayer and love.

Kicking Off Tomorrow

When I say that we are kicking off tomorrow, I'm not talking about a soccer game that Tyler and I will be involved in. While that would most likely be much more fun for us, there is a great deal of excitement and an equal share of nerves as we look forward to the next 3 months.

Tomorrow, Tyler and Scott begin the testing process that occurs before a transplant can take place. We'll be at the Seattle Cancer Care Alliance (SCCA) for most of this week, although we don't know all that is involved. I asked the coordinator for more information a few weeks ago and she indicated that we would get a schedule of events tomorrow in our meeting with them. Tyler and Scott both get a physical at tomorrow's appointment, so I hope they have been eating their Wheaties consistently!

Thursday's meeting with the doctor is also one where I hope to more of my questions about the procedure answered. Hopefully the doctor we meet with that day will be accomodating when faced with our questions about the process.

We'll attempt to post what we learn as we learn more, so hopefully we can keep you informed of our battle.

I am my own father

So, as Mandy has already informed you my father will be my donor if everything goes well over the next month. I guess that means I can put myself on restriction after all this, and as my brother has told me......my putts will start going off the green now (inside joke). Both my mother and father were HAPLO identical matches, but there were indicators from the testing that showed a better potential of successful transplant from my fathers HLA test. It is very complicated, and I wont even pretend to describe the reasons until we find out much much more next week.

My tentative shedule over the next month and a half goes as such:

August 20th: meet with transplant team, and start testing, registration, etc....
August 21st: meet with physician to discuss transplant procedure, etc...more testing
August 22nd: bone marrow aspiration, and other testing

My father will also undergo testing, physical, historical stuff those 3 days

I will continue to do testing, and have many appointments for about 14 days straight until approximately Sept. 4/5 I guess.

They will re-evaluate all the results at that point, and decide if it is still best to proceed with the transplant.

If its still a go: Sept 15th would be the day the would administor a "test" dose of the special antibody regimen for my situation with this specific transplant. If all goes well with that, they will begin giving me this antibody on Sept. 25th, and have me in "isolation" at UW for about 7-10 days. I apparently will be doing my own blood draws, blood pressure checks, vital sign checks, etc... during that time, as nurses arent even allowed to come into the room Im in.

After Im out of isolation, I will have about 5 to 6 days as an outpatient before the transplant date which is tentatively set for October 7th. From there it usually takes about 3 weeks to recover, before they turn me over to my caregiver(s), which will probably end up being a team of several people including Mandy, my mom, Gump, another mom (Kate Bledsoe), another mom (Tud....grandma), and maybe more. They will need to take care of me, making sure to check all of my vital signs and other to be learned criteria to keep me healthy. For about 100 days after my release from the hospital, I will be under 24 hour a day monitoring......and then it will slowly get less and less intensive as I get better.

Weve been told to expect that I may not be able to be out in public for about a year. For sure no restaurants or crowded places. It may be difficult to have company, especially if company is sick at all. In other words we will have to be very careful for awhile.

I am looking forward to this challenge! Im happy that we have a clear cut donor, so that we didnt have to sit down as a family and try to figure out who it would be on our own. Im especially looking forward to getting rid of this Leukemia once and for all. There are so many things Im looking forward to after all this, but I will take it one step at a time. Right now my only goal is to fight this every minute of every day.

Finally, I want to thank everyone for such an incredible response to helping Mandy and I with so many things! I could start naming names, but you all know who you are and I would feel bad leaving anyone out. I just want everyone to know that I am the most blessed person in the world..........my family and friends are incredible, I have so much to be thankful for! I could not be more amazed at how special all of you are! Everyone is giving me boundless strength, and I know I will get through this.

Thank you! Thank you! Thank you!

Tyler

Scott wins!

The SCCA called Tyler yesterday to let us know that the HLA typing is complete on his parents and sister. They have determined that Scott (Tyler's Dad) is the best match for Tyler's surgery, so Scott has to go in for doctor's appointments with us next week and get a physical at the same time.

We are blessed that Scott (and all of the family) was so willing to help by offering up their marrow for Tyler. The SCCA tells us that the type of surgery they want to do requires that the donation be from the marrow, so the donor has a much more invasive procedure than if the stem cells come from the peripheral blood only.

Yesterday's doctor appointment showed an improvement in Tyler's counts:

WBC: 7.8 (a fantastic drop into normal ranges)
HCT: 26.9 (Dr McGee was disappointed and sent Tyler to get 2 units of red blood cells)
PLT: 32 (much improved after transfusion earlier this week)

Tyler's black eye is beginning to fade, so I'm not getting as many looks from people worried about spousal abuse. If only they knew, his lovely niece was the tough one in the family... Actually, the black eye he got just indicates that his platelets were way too low earlier in the week. Now that he is up at 32, he is at less risk for bleeding.

I think those are the updates for now. Many blessings to you all!

Reserve September 12th

Several friends are organizing a Dinner and Auction for Friday, September 12th. We would love for you to join us for a lovely evening together, so we wanted to warn you to reserve the date. Tyler plans to join us for the evening, so it will be a great opportunity to see him if you haven't seen him recently.

Also, if you have something that you would like to have in the auction, you can send me an e-mail. I'll forward to the appropriate body on the auction committee.

More details to follow about the specifics of the night...

High Octane Fuel Update

Tyler visited Dr McGee this morning and got another blood test to see how he is doing. His test results were as follows:

WBC: 16.2
HCT: 24.0
PLT: 15

As his hematocrit (red blood cells) and platelets have both drifted very low, the doctor opted to give Tyler a high octane fill up. Starting about 1pm, Tyler will get 2 units of red blood cells and 1 unit of platelets to bump him back up. This should help his energy level, as low HCT inhibits your ability to spread oxygen aroudn your body. His is very anemic at that level, so he gets short of breath and dizzy with very little activity.

The low platelets mean that he is more prone to bleeding, as the platelets are the clotting parts of your blood. When platelets get really low, Tyler gets lots of little red spots on his skin from internal bleeding. It's especially obvious anywhere he has a band on his clothing (think of the elastic in your socks).

On the upside, we are delighted to share that we have a new nephew!! Tyler's sister, Elizabeth, just gave birth to a little boy named Zachary over the weekend. Welcome, Zachary! The family is at home already and it sounds like everyone is doing well so far. I'm hoping to go meet my nephew later today, so hopefully I can share a picture of the little angel afte that.

A Glimmer of the Future

Tyler got a call on Friday that promised us a glimmer of our future. He has an appointment on August 20th to begin the testing process with SCCA. There will be two weeks of testing and conferences following that date, making sure his body is healthy enough to have a good chance with the surgery.

On September 15th, he will get a test dose of the antibody they are going to give him for his conditioning. I imagine that they need to check for adverse reactions prior to giving him a full dose.

Then, beginning on September 25th, Tyler will get a therapeutic dose of the antibody. He'll have to be in isolation for 5-10 days for that treatment. He tells me that he'll even have to monitor his own blood pressure and draw his own blood because even the nurses can't come in.

He'll finish up the remaining conditioning as an outpatient, in preparation for a transplant on October 7th. Whichever parent is selected as a donor will have their marrow drawn very early in the morning on the 7th and then Tyler will have it infused later that day.

It suddenly seems like this is happening really fast, so please forgive us if we can't see you in person before Tyler starts his treatment. He has to avoid people with signs of illness so that he doesn't accidently catch a bug that will delay his surgery. Added to that, we have many doctors appointments to attend and chores to complete over the next few weeks.

For those of you who know me well, you know that cleaning house is pretty low on my list of fun things to do. However, we are going to be completely purging our house and cleaning it from top to bottom in preparation for Tyler's return from the hospital. I've decided this is yet another excuse to give away more of my stuff. I've got a little pack rat burrowed somewhere deep inside of me and it's a constant tug of war to keep my personal pack rat from running rampant. My sisters can definitely confirm the existence of my pack rat. :) Wish us luck as we attempt to pack and purge over the next few weeks!

Thanks for all of the prayers, the well wishes, and the friendship that you provide!

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