Entry for May 31

Tyler's BCR-Abl test earlier in the month was not completely negative, so the doctor decided to postpone the bone marrow aspiration. Tyler is down to only 30% abnormal choromosomes in his blood, which Dr. McGee said was good progress for where we are in his treatment cycle.

He did, however, finally allow Tyler to get his spleen scanned to determine if he can return to our favorite sport. On Tuesday of this week, Tyler got an ultrasound on his spleen to see if it has returned to normal size. We should get the results from that test either today or tomorrow. We have a Coed game tonight, so we are both hoping that the results come in today and that he can resume all of his regular activities. It's been tough on Tyler to not get the chance to run around and see our friends regularly, so this is a very important milestone for us. If you get a chance (and see this entry today), please say a prayer that the results come in as we hope.

Tyler continues to feel pretty good in every other way. He ran the 7mile Rhody Run in honor of his grandfather last weekend. Although his time didn't live up to what he's done in that race in the past, he completed the race with a minimal amount of training and no soccer in recent past. I was very proud of him for remembering his grandfather in such a special way. They'd both run that race several times in the past. Tyler can probably elaborate more on that...

I survived Mom's software conversion, although I think the jury is still out on whether or not Mom survived it. It was a pleasure to get to have lunch with her for almost two weeks straight, but both of us were disappointed that we didn't get to work together more. I'm hoping she'll have a reason to call me for support at some point in the future though... I do have to admit to being very impressed with Mom's management style. You probably wouldn't be surprised, because so many of you know her well, but she is a beacon of calm for her office even when overworked herself. She uses logic and compassion, intelligence and involvement to bring the best out of her staff. All of my teammates and I were very impressed with how great their staff is. I was extremely impressed with Mom and wanted to share with those who also love her.
I'm hoping that Tyler and I will have more good news to post later this week, but will close for now. Thanks for your continued support and for taking the time to read our blog and find out how things are going with us. Much love to all of you!

Mandy

Entry for May 10

Last Wednesday, we had another appointment with Dr. McGee. He'd been in Hawaii for 2 weeks, so Tyler had blood tests only those weeks. Our nurse, Debbie, tried to trick Tyler into admitting that he had started playing soccer already. Luckily, Tyler has remained strong against the incredible temptation of our soccer games. We were hopeful that his consistent blood tests over the last month might mean that Tyler is ready for his spleen scan.

The doctor said that Tyler's blood work does indeed look great and he was very pleased that Tyler is still doing well at the higher dose of Gleevec. Next Monday, Ty is scheduled to go in for a more comprehensive blood test that will test for the presence of the abnormal BCR-ABL gene in his bloodstream. If that is negative, then Tyler will go back on the 29th for another bone marrow aspiration. We are delighted to hear that he has made such fantastic progress in such a short time! The fact that he is moving towards bone marrow tests means that he is moving further into remission.

On the downside, we found out that we have to wait for the results of the bone marrow test before he can get his spleen scanned, so he probably has another month before he can play with us. We thank all of you for your prayers, your thoughts, your questions about his progress. Please don't worry that we aren't willing to talk about this. We are just happy that so many people care enough to ask.

On the upside, we spent the weekend in Walla Walla for our second annual "Wallapalooza" festival. Although we played even less soccer this year, it was still fun. We enjoyed their spring release of new wines by visiting many of the wineries in the area. I brought back several bottles of tasty wines and I am looking forward to enjoying them over the next year. I think Tyler's highlight of the weekend was probably the "soccer volleyball" game that they invented. Because the risk of him playing soccer is only the unlikely chance of physical contact causing his spleen to rupture, he was able to play volleyball with several of the other guys. They played until long after dark, so it must have been pretty fun. I sat inside and ate everybody else's dinner while he was playing, so I'll probably be twice my size next time you see us. :)

Thanks again for everything! Hopefully Tyler will post his own thoughts soon about last week's appointment and then we hope to have good news for you next week after the BCR-ABL test.

Happy Mother's Day to all of the moms out there!

Mandy

Plant Sale Prep

Tyler is busy preparing for the Children's Hospital Garden Sale this weekend, so I am not sure if he will have time to post this week. Yesterday was another blood draw and all of his counts look very close to what they were last week. This is GREAT news for both of us! He has had blood draws in normal ranges for several weeks now, which is one of our major goals.

Next week when we meet with Dr. McGee, we will ask him again if Tyler can play soccer. Last time we asked, the good doctor said we needed to wait until we had a month of consistent test results under our belts before we could even think about getting a scan of Tyler's spleen. But... it looks to me like we have finally reached that goal! (no pun intended!) Tyler is feeling good and is anxious to get back on the field. On top of that, we have some soccer scheduled during our trip to Walla Walla next weekend and it would be great if Tyler could play a little while we are there.
We had a lovely dinner with Tyler's cousins Nate and Heidi on Tuesday evening. It was a real treat to get a tour of their new home and share an evening with them. They were so gracious about having us over and providing us with incredibly tasty food. Their three kids entertained us with stories of they accomplishments and we enjoyed talking about the stories Nate and Tyler had heard about their dads when Scott and Jim were younger.

Another week closer to Tyler playing soccer is another week closer to our short term goal. I think I'm almost as excited as he is for that day!

Much love to all of you,

Mandy

Entry for April 19

Today it has been exactly two months since I was diagnosed with CML. It seems much longer than that, because life seems so normal right now. I had expected it would have taken much longer to feel as well as I do now. The Gleevec is an amazing drug, and it brings me much hope that I will fully recover.

I have been extremely blessed to have Mandy by my side, as she has provided me with her energy and spirit! The only times I feel sad right now is when she goes off to play soccer. I really miss playing soccer, and being with our friends on the field.

My blood counts have been in the normal ranges mostly the last three times. I need to show normal ranges for a couple more weeks before Dr. McGee can scan my spleen and maybe give me the okay to play soccer again.

In the meantime, I really need to get some inspiration to hit the track, stationary bike, and swimming pool as we will be entering a mini-triathlon in June. (3mile run, 1/4 mile swim, and 12 mile bike ride)

Thank you all so much for your caring and prayers. I can feel them with me!

Tyler

Entry for April 12

T's tests yesterday showed that he is back in normal ranges for almost all of his blood counts. His platelets had climbed another 100 to 287, even though he started taking the Gleevec again over the weekend. Dr. McGee upped T's Gleevec dosage from 400mg per day to 600mg per day. Hopefully the blood counts will stay in normal ranges over the next several tests.

T has blood draws only for the next 2 weeks and then an appointment in the 3rd week. We're hoping for good news in all of the appointments! Overall, he seems to be feeling good. His job is tough now, but he seems to have the energy to keep up, so that is a good thing. We'll see how his energy level is after a full month of hard work and expected overtime.

Thanks to all for the prayers and well wishes. We sincerely appreciate every ounce of support from each of you!

On the newlywed front, things are GREAT! We are enjoying each other's company as much as ever. I'm so thankful that I waited for this wonderful man! We are still trying to finish up thank you notes, so if you haven't gotten one yet it is only because I ran out of cards with appropriate themes. I really wanted to share a wedding photo on the cards because I had liked that so much with my sisters' weddings. But it took us a long time to get pictures due to some challenges in our photographers' lives. We have gotten the pictures now and hope to finish up on making the next batch of cards. If you have known me long, you know that I'm a procrastinator so you probably aren't too surprised.

I guess that is all for today's note; I just wanted to share the latest results with you.

April 9th Post

Ty's latest test results showed that his platelet counts were back up into normal range. The doctor has authorized him to resume taking Gleevec, although he is only supposed to take a 400mg dose and not the 600mg dose he was taking before his sinus infection kicked in. He wasn't experiencing any side effects, other than the anemia and low platelet count, so I am hoping they will be able to up his dosage again soon. The 600mg dose is supposed to provide better results for those who are able to manage it.

T's Letter to the family

Hey everyone, I wanted to first of all thank you all SO much for your help during our wedding ceremony and reception! Mandy and I enjoyed it very much, and you all had a huge part in making it so special! Even though I wasnt feeling 100% just getting over my pneumonia I had a very special day and night!

Quite a few of you know more about what is going on with me with regards to my health, but I wanted to update everyone on whats going on. The weekend before the wedding I was pretty sick, and it eventually got so bad that I needed to see a doctor. I went in on monday (week of the wedding), and he looked me over to see what was going on. They took a blood sample, and found that my white blood cell count was extremely high (132,000.......compared to normal which is under 10,000). He was actually in stunned amazement that I seemed pretty healthy other than my cold symptoms. My blood pressure, temperature and most everything was quite normal. They took a chest X-Ray and found that I had pneumonia pretty deep in my system. They took a second sample of my blood to make sure the first one wasnt a mistake, and sent it to Stevens hospital. They sent me home and were to call me when they got the results back in one hour.
When they received the results, they were the same...........and the doctor told me to go directly to the ER at Stevens. Once there they put me on an IV right away to hydrate me and help me get on the mend, and we waited to hear from the pathologist about my blood sample. The ER doctor informed me very matter of factly that he had never seen this high a white blood cell count in 10 years of being an ER doc at Stevens. He knew that it was most likely Leukemia, and told us as much. We were both very scared upon hearing this news, but knew that I was in good hands. Before we got the results, they decided to admit me to the hospital and I was to hear from an Oncologist later monday night.

The results did indeed confirm that I have Chronic Myelogenous Leukemia (CML). By the time we heard the results, I had already begun to think ahead as to how I will fight this blood cancer. I will fight this cancer the same way I have always taken on a challenge! I will remain positive through this and will move forward as planned. I am so thankful for all of the gifts I've been given in life, and this wont change that. I am an extremely blessed man, and now with Mandy by my side I am more blessed than ever!

Fortunately, I have a form of Leukemia that is treatable, and it looks like we caught it soon enough to be able to fight it quickly. Over the next few weeks we will learn more as the results of my bone marrow sample come in, and my blood is examined on a weekly basis.

I am very confident with all the love surrounding us from family and friends that we will be able to get through this! You have all treated me like family from the beginning, and I respect all of you so much! I want you all to know that I am feeling well, and Mandy and I have enjoyed married life to the utmost thus far. We had a week to relax after the wedding and I am now back at work full time. Please pray for both of us to fight this blood cancer.

Originally posted by Tyler on Thursday March 29, 2007 - 02:31pm

A Challenging Week

It's been a wild ride for my new husband and me over the last month. A week before our wedding last month, he came down with what he called the worst cold he had ever had. He started getting sick on Friday and spent all weekend sleeping and coughing and feeling miserable. On Monday morning he went to a walk-in clinic for diagnosis. The doctor there was a little concerned by Tyler's cold symptoms, but he was more concerned about the results of his blood work. He drew another blood sample and sent it to another lab at a nearby hospital for confirmation. The doctor sent Tyler home to wait for that result. When he called back, later in the afternoon, he said the second blood draw had confirmed the initial counts and advised T to go to the Emergency Room.

We checked into the ER about 3pm on a Monday. We were taken back to a room right away, so we were thankful we didn’t have to spend a great deal of time in the waiting room. They took yet another blood draw, so my poor guy had been stuck all over by then. This last confirmed what all of the others had and we started to get scared by what we heard. The average person has white blood cell counts between 4 and 10 thousand per unit. A sick person might have a white blood cell count as high as 20 thousand as their body attempted to fight off the infection. T’s blood count on that day was 132 thousand per unit.

The only thing that causes a white blood cell count that high is leukemia.

The doctors in the ER were really great about keeping us informed about the process. They spent most of the next few hours trying to determine if the leukemia was an Acute or Chronic version. The Acute Myelogenous Leukemia is significantly more dangerous and would mean in hospital treatment for the next month. The blasts in AML happen so fast and are so immature that they have to work immediately to bring down the counts and get the patient into serious treatment. The Chronic Myelogenous Leukemia (CML) would likely have been present for years and gradually was causing more and more problems, but wasn’t so dangerous.

After several hours in the ER, they finally made the decision to admit Tyler into the hospital without knowing exactly which kind of leukemia he had. In addition, they had an oncologist coming in to meet with us later that evening. We had been on the phone with our parents and siblings throughout the afternoon, so they started arriving about the time we were moving upstairs to a private room. It was such a great relief to have them there with us – my strength was significantly bolstered having loved ones with us.

When the oncologist met with us, I was very impressed. He was good at explaining more about the disease in common language and what we could expect for treatment. He thought Tyler could be released from the hospital in time to be at our wedding that weekend, but we needed to cancel our honeymoon plans for now. Treatment would entail weekly office visits for a period of time, as they monitor his body’s response to medication.

Tyler was in the hospital until Thursday of that week, but was released with lowered blood counts. He was down to 99 thousand white blood cells by Thursday. There was much to be done on Friday in preparation for the wedding, but he was able to do what needed to be completed. We made a decision not to tell people about his diagnosis until after the wedding. We didn’t want to mar the joy of our wedding with the sad news of a chronic illness. It was sad not to be able to share such an important turning point in our lives with so many dear friends and family, but we appreciate your understanding about our decision.

Our wedding day was filled with joy. Tyler got a little tired during the actual ceremony, but you wouldn’t have known if he didn’t tell you. Once he sat down for a meal at the reception, he recovered his energy pretty quickly. We danced, we talked with friends and family, we enjoyed our day SO MUCH! Thanks to all who contributed to the fun!

More to come later on the ride we’ve taken with this leukemia thing…


Originally posted on Wednesday March 28, 2007 - 06:01pm (PDT)