On a rainy and somewhat cold evening, my parents and I met to keep the Team Firefly tradition alive. The field where the tents were set up was muddy and soggy, so we didn't spend too much time milling around this year. Added to that, my parents were anxious to catch a ferry at a decent hour, so we started the walk around Greenlake right at 7pm and walked at a decent pace throughout. It was really a treat to spend some uninterrupted time with my folks talking about Tyler's treatment and life in general. I'm so thankful that they were willing to come meet me for the walk.
Our friends Ceci and Darren also invited me to walk with them and their team, which I deeply appreciated. Hopefully the timing will work out better for next year! I'm very close to my goal for this year's Light the Night walk and money I was able to raise for the Leukemia and Lymphoma Society, so I wanted to thank everyone who donated to my walk and helped me get so close to my goal. Thank you all for your donations and for supporting us in so many other ways.
Tuesday, September 30, 2008
Monday, September 29, 2008
Tyler got his haircut today, in preparation for his radiation and chemo. Much to my surprise, he looks even more handsome with his new haircut! I sure caught a good guy when I went fishing for this one. He has just informed me that Kate is the excellent barber that made him look so good. I'm blown away. I just assumed it was done in a barbershop somewhere.
Anyways... Today was another lumbar puncture and the 2nd dose of the thioteppa. I've been praying that the test results on today's CSF wll show a reduction in the leukemic cells. We should know the test results later this week and will try to post without too much delay.
Sunday, September 28, 2008
Our appointment with our physicians on Thursday went well. We really like Dr Appelbaum and are sad that he will be rotating off our team in about a week. He and Dr. Lindgren explained more about the thioteppa that they are using to treat Tyler's spinal fluid (CSF) now. If this drug kills off the leukemia in his CSF, then they will proceed with the transplant. If it doesn't work, then they will likely have to turn to cranial radiation to kill off the leukemia. We don't know exactly what side effects would go along with the radiation, but I assume they won't be so good.
Tyler's next lumbar puncture is on Monday, so we should have results from the new chemo on Wednesday.
Wednesday, September 24, 2008
I was invited to join in a fun sounding challenge to benefit the Leukemia and Lymphoma Society and thought some of you might enjoy an excuse to get muddy too... The Winter Pineapple Classic is 5K run with "obstacles" promising that you WILL get dirty if you participate. If that doesn't sound like enough fun, the lure of a Hawaiian Luau (with FREE BEER from Georgetown Brewing Company) in the middle of November is bound to get the rest of you.
You can compete in teams of 2 or teams of 4, so go round up some friends and sign up today! Check out the web site for the answers to other questions you might have. Register early to get the cheapest price; invite friends and coworkers to make it more fun! Your registration includes a ticket to the luau, but guests can also come for the fun for only $5.
See you on the obstacle course!!
On Friday, one of the doctors called to let us know the results of Tyler's latest spinal fluid test. Sadly, the percent of leukemia cells had climbed from 16% up to 21%. The doctor didn't want to worry us, but the transplant team did decide to change the chemo medicine that they have been using for his lumbar punctures.
That might not have been a matter for concern, except for the response we got at Monday's appointment. When we got to UW for the lumbar puncture, Tyler asked them a question about the new chemo. Tyler's question made the staff realize that they were administering a new chemotherapy that they hadn't given before for the procedure. So there was a delay as they tried to hunt down an oncologist to be there during the procedure.
Apparently they wanted to be sure of the impact of the drug before they gave it to Tyler. While we appreciated the care they took to check out the procedure, their words were not really inspiring our confidence in the procedure.
We are both a little bit frustrated that Tyler's doctors changed the orders without giving us the opportunity to learn more about what they want to do and why. It's frustrating that we don't know what's going on at times when we receive our appointment schedules. The appointments aren't really explained well as to what they are on the schedule printout we get. Our questions are eventually answered, but we really have to pursue the staff and ask questions.
After our appointment on Monday (30 minutes extending into 3.5 hours), we are growing somewhat weary of these doctor's appointments. . We still haven't heard about the results of Monday's lumbar puncture, so we are expecting the news to be something we don't want to hear again. But we do have our clinic visit with our nurse and doctors tomorrow (Thursday) and should be able to talk to them about the results and what they mean.
We'll try to post more after we know more about what is happening...
As Tyler enters the hospital and his transplant phase, we do need to ask that you do not send cut flowers or live plants to him. A great deal of bacteria can reside in either the water or the soil, which is a big risk to him with a suppressed immune system.
We also must avoid people that are showing signs of illness and pets for several months post transplant. If we are going to be seeing you, please let us know if anyone in your household is ill. We will reschedule our visit until a healthier time. Also, please close your pets into another room while we are visiting.
Sorry to list the rules right up front, but we don't want to have to turn away a flower delivery.
Tuesday, September 23, 2008
Can you hear Dracula in your head when you read that title?
My work is hosting a blood drive on October 1st and anyone in the area is welcome to participate! As many of you are aware, blood drives like this are an important part of Tyler's treatment. The blood collected from the many volunteers around the Puget Sound provide much needed blood and blood components to people in need. When Tyler's red blood cells or platelets dip too low, the Puget Sound Blood Center is called to provide 2 units of blood components for him.
You can sign up for a slot using the below link. Just click on October 1st on the calendar and away you go.
If you do choose to come donate at my office (in South Everett), please let me know so we can schedule lunch together or something. I figure a blood drive is a good excuse to spend time with friends or family! :)
If you aren't in our immediate area, you can always search out a blood drive in your local region by going to the Puget Sound Blood Center website or your local blood center (if in another state altogether).
If you are nervous about the procedure, I can understand completely. I had wanted to help for several years and never worked up the courage to donate until I started working at my current position. Now, of course, I feel even more compelled to donate (although they won't take my blood until December thanks to a honeymoon stop in Honduras) with the hope that I can be of help to Tyler in this small way.
If you have never donated blood before, please think about taking that one step this month to support people around who need that extra boost for their own blood. The blood you give may be the blood Tyler gets through transfusion some day (although we will never know for sure)!
Thanks for your help!
Friday, September 19, 2008
I am spending today recovering from yesterdays treatments. I had two separate blood transfusions (one in the morning, and one in the evening.....platelets and red blood cells), and mixed in between I had another spinal tap with chemotherapy. We have heard back about the results from the first chemo treatment into my spinal fluid. It reduced the Leukemia (by flow %) from 35% to 11%, which is a very positive sign that the chemo is working to clear my fluid. My spinal tap yesterday was actually my 3rd treatment of chemo, and the drawing of yesterdays fluid will reveal the results of the 2nd chemo application from last friday. It seems complicated probably, but the bottom line is that we are all very hopeful to clear the fluid and proceed with the transplant with about a two week delay.
I apologize for not posting until today, but it has been a stressful few days wondering how the first treatment went, and figuring out how we were proceeding with my care. My 4th spinal tap with chemo will be on wednesday the 24th, and the goal is that by then it should be clear. I believe they mentioned that they may do a 5th application as an insurance dose to make sure that no Leukemia leaks back into my spinal fluid before the transplant.
My spirits during all this have been like a roller coaster with many setbacks, positive days, uncertainty, etc.......but I want everyone to know that the support I feel from all of you has made me not only appreciative, but so proud to know so many truly great people! The auction night was beyond what I ever imagined! To see that many people come out for one night in what for me was a stunning show of support! I am truly blessed, honored, and still blown away by all of it. For me the visual show of support when I walked into the hall and saw so many friends and family was all I needed that night to lift me up. I was on adrenaline all night long and extremely happy.
Thank you all for supporting Mandy and I, we love you all very very much!
Wednesday, September 17, 2008
Last year, we participated in the Light the Night walk to raise money for the Leukemia and Lymphoma Society (LLS). With Tyler's health issues this year, we have backed off on raising a bunch of money for the LLS. I am still planning to walk this year in honor of Tyler and Cathy Frank (a relative who passed away from leukemia) and welcome any of you that want to join me.
The walk takes place at Greenlake on Saturday, September 20. Anyone who raises at least $50 gets an illuminated balloon to carry, which makes a beautiful sight as the evening light fades to darkness. If you decide that you want to walk, you can register online by joining Team Firefly. Click the icon to "Join Team" and search for Team Firefly. You can also sign up at the event!
Festivities begin at 5:30pm on Sept 20th, including registration. All fundraising participants will receive an illuminated balloon and that they encourage each participant to fundraise to the minimum of $50.00.
The Remembrance Ceremony is at 6:00pm & the walk starts at 7:00pm
There are shuttles from the Bathhouse Theater & Aqua Theater parking lots, please use them as the Green Lake Park parking lot is open to the public at all times & parking in there can get sticky. We cannot save any parking spaces, sorry.
All the funds raised go toward the mission of the Leukemia and Lymphoma Society: to cure blood cancers & improve the quality of life of our patients & their families.
Please let us know if you plan to walk with us, so that we can meet up with you.
The hottest accessory this year was actually donated by a generous family as another fundraiser for our Bledsoe Battle. You can see our Bledsoe Battle bracelets that were first shared at the Dinner and Auction on Friday. They were sold for $5 each and were a big hit! One side says "Bledsoe Battle" and the other side says "Live Every Moment". We felt these were the best messages for us to share with others.
We still have a few leftover, so please let us know if you want a bracelet. There are both medium and large sized bracelets left, so we need to know what size you want if you want some.
Thanks to our donors for making this possible. It's actually really amazing to look down at my wrist and see a reminder of the hope that Tyler and I have for a successful cure.
Tuesday, September 16, 2008
Thank you SO MUCH to all who were able to join us at Friday's dinner and auction or contributed in any way to the success of the event. I know there has been a lot of wonder about how the event went, so I wanted to post a quick note.
First off, over 200 people joined for dinner and some great shopping on Friday night. That alone made the evening a success for both of us. We tried to talk to as many people as possible and hope you will understand if we couldn't get to you in person.
We do owe a special debt to Cynthia Loland, who fielded the many questions, calls, and e-mails from people who wanted to donate or attend the auction. I don't think she was actually able to work or enjoy her vacations over the last month, but she did an amazing job coordinating the event!
Thank you to Brad Barquist for acting as the evening's auctioneer and entertaining everyone with his great humor and spirit. Thank you to Hans Loland for spending all night printing the auction catalogs, as well as all of the other numerous tasks he had to keep up with. Thank you to Luke & Nicole Curry, Andy & Kim Simonsen, Erin Aten, Jeannine Jensen, Mike & Heather Morelli, Chris and Suzy Hansch, Mike and Cynthia Boggs, Mark & Vicki Frasher, Andy & Amy Myers, Eric & LeAnn Miller (and any others that joined in) for coming up with this idea and bringing it to fruition.
Thank you to Marv Miller for providing the tasty food and organizing the kitchen crew. Thank you to my sisters, Bonnie and Julie, for keeping the check in and check out lines moving so quickly. Thank you to Darren Rozendaal and Sears Young for running the bar. Thank you to our families for helping set up, collect auction items, and fill in wherever needed at the auction.
A great many other family and friends spent hours working on this event and making it flow as smoothly as possible, but I don't even know the full extent of what help was provided by whom. We just know that we are in your debt.
Tyler and I have frequently spoken about how blessed we are to have the families we do and friends that we do. We would not be able to get through this difficult time without all of you in our lives. Thank you for bringing us so much joy and easing so many burdens in our lives!
Finally... the piece of information that everybody has been asking about... The most recent tally on the night for the dinner and auctions is...
Are you sure you want to know?
The grand total is over $46k for all that was taken in for ticket sales before the event and at the door, bar, and sale table on the night of the dinner. Thank you from the very bottom of our hearts for your willingness to come out and support us emotionally and financially.
We saw at least one friend taking pictures, so we hope to share some pictures with you soon. I didn't even bring my camera inside, so I will have to rely on others for their views of the evening.
Tuesday, September 9, 2008
Today's lumbar puncture was significantly better than last week's procedure. They used a kind of Xray machine to find the spaces in between Tyler's vertebrae and slipped the needle right in easily today. They took about 14 cc's of spinal fluid for testing and then injected about 2 cc's of anticancer medication. Although we probably have the medicine names written down somewhere, all of the names blur together for me at this point.
Tyler seems to have no ill effects at all from today's procedure. He did opt to drink the "presecribed" dose of caffeine this evening to prevent a spinal headache. In about 20% of the people who get a lumbar puncture, they get a headache from the loss of the spinal fluid. Last week, the doctors prescribed caffeine with dinner to avoid that complication. Although they didn't say anything about caffeine today, we felt it was probably assumed that doctor's orders include a Coke with dinner. What do you think?
My larger than life sweetheart is seen in the picture above while enjoying his brother Sam's birthday party on Sunday. Sam and Colleen had a fun filled afternoon planned for us with hot dog roasting, a pinata, and cake for all. It was a sunny day and perfect to be outside in Colleen's backyard!
Tomorrow is a blood draw and the regular check in with our nurse and PA, so it's a low key day.
Monday, September 8, 2008
We got some disappointing news about Tyler's spinal tap last week. Unfortunately, the tests did reveal leukemic cells in Tyler's cerebral spinal fluid. One of the reasons they test for this is because the chemo and radiation therapies that patients go through do not cross that blood/brain barrier to kill leukemia.
With those results, the doctors have scheduled Tyler for another spinal tap on Tuesday. This one will be done under fluoroscopy, which allows the staff to more accurately identify the holes in Tyler's spine and stick the needle in the right place. They also plan to sedate him for the procedure, which should help a great deal with avoiding the pain he went through with the last procedure.
During this procedure, they will inject chemotherapy into Tyler's cerebral spinal fluid to attempt to kill off any cancerous cells there. We didn't expect to have to start so early, but we have been assured that the side effects should be minimal with the drugs they are using.
For those of you praying out there, I ask that you pray that the Tuesday procedure will be easy for Tyler and that the leukemic cells are all wiped out when next they test his spinal fluid. If they are unable to eradicate these cells before the transplant, I fear that they will call off the transplant entirely. No one has said anything to that effect, but the risk of relapse is too great if we can't kill off the leukemia entirely.
We are looking forward to seeing many of you at Friday's dinner and auction. Thank you to the many people making time in their schedule to join us for our Bledsoe Battle celebration. I think of this like a tailgating party before the big game starts. If you can't make it that night, we understand completely. We are just moved that so many friends (and friends of friends) are joining us for the event. We are getting our final counts for food this week, so if you haven't registered for the event you should reserve your spot either at http://bledsoebattle.eventbrite.com or by e-mailing firstname.lastname@example.org.
Friday, September 5, 2008
We have been asked by several people to share the information about the Benevolent Account that has been set up on Tyler's behalf. The Benevolent Account for Tyler is at Washington Mutual Bank. Kate (Tyler's stepmother) opened many of these accounts when she worked there and thought they were terrific.
The concept is simple: an interested party or family member opens an account for the benefit of the individual concerned; monies are deposited directly into the account by those who wish to do so, at any branch. The depositor receives a receipt, and the donation remains anonymous, unless the depositor wishes to let the individual know directly. The money in the account is used in any way needed by the recipient's advocate. That might be, in this case, to pay directly into the transplant fund or to utilize for gas for daily trips to the Seattle Cancer Care Alliance - or for a utility bill. The purpose is to lend support to the situation caused by the hardship or illness.
The account information is as follows:
Amanda Bledsoe FBO (for benefit of) Tyler Bledsoe
Washington Mutual account #: 442 145343 4
Checks may be made out to Amanda Bledsoe FBO Tyler Bledsoe, and the account number may be given to ANYONE interested. In fact, I would suggest being sure to have the account number when depositing - Kate says they used to have difficulty locating these accounts by name only at WAMU.
Tyler got a call from Rose Crew, our case manager with Premera, yesterday. She says that Premera has approved Tyler's transplant! That means they have finally committed to the $250,000 from Tyler's policy towards the transplant. This is a huge relief to us because Tyler's transplant is a Phase I trial, which means the insurance company would be much less likely to pay for because it is much earlier in the research process.
Tyler will actually be only the 3rd person to ever get this particular combination of radiation and donor. That definitely has made me more nervous, but our meeting with Dr Pagel (the doctor heading up this particular trial) explained to us that the radiolabeled antibody had been used in lots of autologous transplants (where the patient gives their own marrow for the procedure) with success. They were just now testing how it could be used in allogeneic transplants (when the marrow comes from another person).
Perhaps 10 years down the road, another family in our situation with be thankful that Tyler was willing to get a transplant with a radiolabeled antibody and parent donor. We are certainly thankful to those who blazed a trail with the whole transplant process over the past 25-30 years.
Thursday, September 4, 2008
Just a reminder that there are still tickets available for next week's spaghetti dinner and auction. You can reserve your spot at http://bledsoebattle.eventbrite.com. Even if you can't join us yourself, we would appreciate it if you would help us to spread the word.
I am still getting my blood drawn on mondays, wednesdays and fridays typically and things have been slightly better with my RBC and platelets improving. This week I also had to have an ultrasound to look at my organs (specifically my liver) to see if there were any concerns. I also was able to meet my new attending physician on wednesday, as she replaced my original PA. They rotate on the 6th of every month.
After our brief introduction she apologized for having to stick a 5" long needle into my spine!! Let me splain.........for all transplant patients, they have to do a procedure called a Lumbar Puncture.....I guess they think that sounds better than a Spinal Tap? I liked Mandy's name for it the best Lumbar Tap. The reason they do a spinal tap is to find out if any Leukemic cells have crossed what is called the blood/brain barrier. If they find any leukemic cells in the spinal fluid.........that is not good! Our blood/brain barriers are really good at keeping bad things out apparently, but occassionally some can slip through so they need to make sure. So anyway, I had to lay down on a bed while they give me a numbing agent (lydocain I believe). The nurse instructed me to roll myself up into a ball........similar to what a potato bug does........well Im not that flexible! I did my best, and tried not to be nervous, even though the techs in the blood lab had told me this procedure was more difficult than a bone marrow aspiration! That was not welcome news, as I had been getting conscious sedation (my best friend right now) for those procedures. So there I am lying on my side rolled up like a potato bug trying not to shake and sweat with some obvious fear settling in.........and they are saying......."now try and relax"!
The first attempt didnt go well as my newly acquainted physician was unable to find the sweet spot to draw the spinal fluid. After about 5 or 6 attempts with the 5" needle.........she called a second nurse in to help find the spot.........they assured me this was normal, about 20 seconds after the first nurse said I was in her 1% of failed attempts stats. "99% of the time I get it on the first try!" she said as I lay there thinking ......now what?! So the second nurse comes in........more lydocain.......and a few more attempts at finding the sweet spot. On about the 5th attempt..........I felt this lightning bolt of electricity go down my right leg into my foot, and then back up through my leg at a slower pace..............I told them immediately what was happening, and they said oh good we found the spot! At this point I am thinking to myself .......find a happy place!
They were in and my spinal fluid was drawing into a tube..........at last! Mandy was watching the procedure the entire time, and told me about the length of the needle afterwards and that my spinal fluid is clear like water. Hopefully I will not have to do another Lumbar Puncture.
We will be having a second consult next week to discuss the transplant further. They havn't found anything wrong yet that would prevent them from doing the procedure, and we are feeling more and more comfortable with our transplant team and the process every day.......well maybe except during that Puncture.
Hope to have more for you soon,
On Tuesday, Tyler had our first ultrasound and we are pleased to report that it's a boy! Just kidding... We aren't expecting the pitter patter of little feet or anything. They were actually checking for gallstones by using the ultrasound. It is certainly interesting technology though... Thankfully the radiologist and the ultrasound tech did not see anything that looked like a problem, so that was good news.
Tyler had to fast for 8 hours before the test, so it was a good thing they didn't give us any bad news after all of that. He was at least sane and kind to everyone despite his empty stomach. We all know that I would not have been so gracious after fasting. If had last eaten the night before and then had to get up at 5:45 to take medicine because I could have nothing by mouth (no food and no drink) all morning, the doctors might have had a hurricane on their hands.
Probably the best part about the ultrasound test is that it was over before it was scheduled to begin! Our appointment was for 2pm, but we were showed in early and done by 2pm. You've got to love a doctor's appointment that gets you done early, right?!
Monday, September 1, 2008
It may be a little thing, but it still had us doing a victory dance this morning...
Tyler's blood test today:
His hematocrit climbed from 26% to 28% and his platelets climbed from 34 to 51 over the weekend. Tyler's counts have not improved like that in two months, so we are thrilled to see a hint that the Tasigna is working! We are getting another blood test tomorrow to make sure this test wasn't an aberration, but we were sure happy to see that Tyler is making his own blood again!
Tests are down to a minimum this week, with only Tuesday and Wednesday afternoon appointments scheduled. With luck, our schedule will stay light for the next couple of weeks until Tyler's therapeutic dose.
Happy Labor Day to all!