Tyler and I have been in the habit of predicting his platelet count over the last week and I've had a pretty good record so far. While I missed yesterday's count (by a whopping 9), I was dead on this morning and it was the best one yet!
For the first time this month, Tyler's platelet count increased on its own! He actually climbed from 28 yesterday to 31 today. Our nurse says that platelets are the last thing to recover from a marrow crisis, but it's great that Tyler's finally gotten there. While we have had no tests to see test for abnormal cells, this test suggests that the Sprycel is doing its job and getting the blast crisis under control. Once the blast crisis is back under control, Tyler's body is able to make useful cells like healthy white blood cells, red blood cells, and platelets.
Another bonus from today's visit is a brief hiatus from the doctor -- we get to sleep in tomorrow and avoid going to the hospital for a blood check. It'll be only our second day away from the hospital/doctor since we got back into the country. :) We are so excited to have a day off!
We are hopeful that he has turned a corner in this current battle and thank you for your continued prayers!
Monday, December 31, 2007
Tyler and I have been in the habit of predicting his platelet count over the last week and I've had a pretty good record so far. While I missed yesterday's count (by a whopping 9), I was dead on this morning and it was the best one yet!
Sunday, December 30, 2007
Yesterday, Tyler was right at the borderline for needing red blood cells and hydration, so we fully expected to spend today at the hospital getting infusions. We also expected his platelet count to be on the borderline today, since he has been burning through about 12-14 per day and was at 32 yesterday.
In a stunning change of events, Tyler's tests today allowed us to leave the hospital by 9:30am and prepare to spend the day however we wish. His red blood cells climbed from 27.7 yesterday to 28.1 today AND his platelets only dropped to 29! Dare we hope his body is starting to produce a few on its own?
Tomorrow's test will probably give us a good idea, but we're hopeful that maybe his blast crisis is getting back under control. Say a prayer with us, will you?
Thursday, December 27, 2007
Tyler is on daily blood checks this week to make sure his platelet and red blood cell counts stay at a good level and today's check indicated that he needed a little boost in platelets. So we headed across the parking lot to get his fueling. He says it is funny that he doesn't feel any different with his platelets at 14 (today's count) or his platelets at 40 (Monday's count). His red blood cell count has been holding steady, so we are thankful for that.
After a little hiccup in getting the platelet request to the blood bank, they found a match and got the unit of platelets to us as soon as they could. Tyler was hooked up to an IV for about an hour to get the drip and then we headed out. Unfortunately, it was a day of delays. We left home at 8:30am this morning and I dropped him off about 2:30pm after all of that. Where does the time go??
Overall, he is doing well, so we are very thankful for that. We did learn a lot more about stuff going forward and some of it was hard for us to hear. If Tyler opts for a transplant, he will likely be on immunosuppressant drugs for the rest of his life. I don't really know that means in terms of work, soccer, other parts of life so we need to look into that. It also looks like Tyler will probably need to get platelet transfusions about every 3 days for a little bit.
They should have a better idea of how well he is responding the Sprycel after a few weeks, which will determine what happens next with his treatment. Dr M2 (filling in for our regular oncologist over the holidays) says that they will not be able to do the transplant while Tyler is in a blast crisis. It is critical that we get his disease back under control.
Here's hoping the Sprycel does what we want it to do!
Monday, December 24, 2007
After many prayers and much hoping, I am happy to share that Tyler came home last night! We got home from the hospital last night about 6:30pm and basically collapsed on the couch. It's amazing how much energy you expend when you spend days in a hospital.
Today we are spending a quiet Christmas at home. We're sad to pass on the family gatherings today and tomorrow, but we need the time at home to rest up. We hope to see everyone in January (maybe at Bryan and Heidi's wedding reception if things are going well) or soon after.
We had a doctor's appointment this morning and the doctor gave us the freedom to be home for the rest of today and tomorrow. Tyler's numbers were good today: his Red Blood Cell and platelet counts were up and his White Blood Cell count was down.
Merry Christmas to all of you!
Saturday, December 22, 2007
Several people have asked what they can do to help after hearing the news that Tyler is fighting a new stage of Leukemia. Here are a few things that occurred to me:
1. Give us a call. We would love to knkow that you are thinking about us and hear what is happening in your lives. Sometimes we want to pretend that things are normal, so forgive us if we change the subject to something other than Tyler's health. With that in mind, I don't mind talking about how he is doing, so if you have questions please feel free to ask.
2. Pray for his health. It means a lot to know that people are out there thinking of us and praying for his recovery, his treatment, etc. There is so little that we can do and so much that God can do on our behalf.
3. Make an appointment to donate platelets or blood. If you live in the Puget Sound Area, you can contact the Puget Sound Blood Center to find out where they are having drives. Donating blood takes about 15-30 minutes and donating platelets takes about 2 hours. Tyler got his first platelet transfusion today and we expect several more, so it would be wonderful if we could fill up the blood banks.
4. Consider registering for the National Marrow Donor Program to see if you are a match for anyone out there needing a transplant. Information about the Puget Sound Blood Center's upcoming drives can be found here. You must be between 18 and 60 and in good health to join the registry and if contacted as a match, it is essential that your respond quickly on whether or not you are able to help the patient in need. If you do not meet the guidelines to register as a donor, they say you can help but donating funds to help cover the registration fee for another person. It costs about $52 to complete the tissue typing, so there is some cost involved for the potential donor too. It is likely that Tyler will need a stem cell transplant in the next several months so we are looking to be prepared for that. Full siblings are the best likelihood for a tissue and marrow match, so they will start the testing with Tyler's brother. If he is not a match, they will be looking in the NMDP database for an unrelated matched donor.
To relieve any fears out there, the research I have done over the past few days seem to indicate that more transplants these days are Stem Cell transplants from the donor's peripheral blood (probably in a process similar to donating blood), and it does not necessarily involve taking any marrow from the donor. You can read a fact sheet here if you want to know more.
The need for persons of minority to join the database is critical, as most of the registrants at this point are caucasion. While Tyler won't match with a registrant from a minority group (ethnicity is one of the matching criteria), you can help us to spread the word and maybe we can help someone else in Tyler's shoes.
If Tyler's brother is not a match, expect to see us posting our call for friends and family to join the NMDP and share the word with as many people as we can at that point. Nothing needs to be done at this point, unless you are moved to register with the thought of helping anyone. I'll continue to learn more over the next few months and share the information with you.
Thanks so much for everything!
Disappointing news this morning from Dr R. He's the one covering for Dr M over the holidays, so he visited us today to check how well Tyler had responded to the platelet transfusion yesterday.
The good news is that his platelets climbed from 12k to 44k thanks to the added boost yesterday. They want to monitor how fast his body goes through this batch of platelets before letting him go home, so that we can have an undisturbed holiday before visiting the doctors again next week. So, we are in a holding pattern today. Tyler will be in the hospital for at least one more day.
While we are disappointed that he won't get to come home tonight, we are both very encouraged by his blood counts today. His platelets are up and his white blood cell count has continued to fall. He's into the teens today (16.3k) and they've stopped the Hydrea pills (which cause his WBC count to fall rapidly).
We have decided that, even if Tyler is out of the hospital for the holidays, we are going to stay home for Christmas Eve and Christmas Day. We will miss seeing family at the gatherings that we know are taking place, but we really feel like we need to have a few days at home to regain our strength. Please know that we wish you a very Merry Christmas and we hope to be out and about much more in January.
Friday, December 21, 2007
When we met with Dr M (and our favorite Oncology nurse, Debbie) this morning, the doc said that Tyler was essentially healthy enough that his remaining symptoms could be treated as an outpatient. However, we could not leave the hospital without having a supply of Tyler's medication (Sprycel). Just an interesting fact on that... Dr M says that Tyler is the first Premera patient to be approved for Sprycel. It's a relatively new medication, having only been approved by the FDA in June 2006. A newer version (Tasigna) was just approved yesterday, so more possibilities are on the horizon.
Anyways... Tyler called me this afternoon to say that the medicine was supposed to be in at the pharmacy until late today. I just got off the phone with them and it is in now, so I am off to pick up Tyler's medication. Hooray for that because it means he will most likely be released TOMORROW!!
Wednesday, December 19, 2007
We also talked to Dr M about the possibility of a transplant. He clarified that he was anticipating that Tyler would most likely get a Stem Cell transplant, not a bone marrow transplant as I had originally anticipated. Some of the reading today indicated that a Stem Cell transplant is considered to be a cure for CML. It will be interesting to keep reading about the process and learn more.
Tuesday, December 18, 2007
We had a very good honeymoon and will fill you in more on that front in a later message, but for now I thought it more important to get the news out about Tyler's health. On Monday, December 17th, we had an appointment with Dr. M to get the results of the Bone Marrow extraction from the 12/4 and the Gleevec level test that Novartis (the manufacturer) was offering from Dec 7th.
After being off Gleevec for a full week, we were hoping that Tyler's platelet count had climbed back up into a more comfortable range. Unfortunately, Monday's test showed that he had actually dropped to 21 for his platelets and his White Blood Cell count had climbed to 52000. This is a bad sign and, an in combination with the Gleevec Level in his blood, indicates that his disease is no longer responding to his chemotherapy drug.
The doctor also discovered that Tyler had a temperature of 101-102 and an ear infection and recommended that he check into the hospital that night to get both of those things under control with intravenous antibiotics.
He is switching Tyler's medicine to Sprycel (the next generation of drug after Gleevec) as soon as the hospital pharmacy can get some and we'll hope for a positive response to that. They do say that Tyler will most likely need a transplant now to fight his disease. We hope to learn more over the next few days.
He doesn't feel really sick, so he is resting fairly comfortably in a private room. I think his biggest challenge will be boredom, so I'm taking a stack of movies to him tonight. Frequent score updates will be helpful for any NFL games being played this week (although I'm hoping he will be out in time to watch them).
Thank you for the prayers being said on his behalf and for the calls and e-mails sharing love and support. He is currently at Steven's Hospital, in Edmonds, in Room 802 if you want to call or come by. Visiting hours are 2pm - 7pm and we expect to be at the hospital for a few days this week, if you decide you want to visit.
Friday, December 7, 2007
Wow! We've had more than our share of trials recently. It all began on Halloween (Tyler's birthday) and we've been battling different issues since then.
Probably one of the most challenging is the fact that our mini has been totaled (from a minor collision) due to some damage of the engine block. Tyler was hit by a lady entering a road from a parking lot on Halloween evening. He was completely stopped and she just never saw him there. He's been fighting with the insurance company this week to get fair compensation from them for our vehicle.
So... We are in the market for a vehicle. Ideally, it will be something that is reliable and handles well in the snow. Other than that, we are somewhat flexible.
The other challenge that we are currently facing is a slight blip in Tyler's health. We went in to Dr. M's office on Tuesday for a bone marrow aspiration. This was pretty much a 3 month follow up from his last bone marrow test to see how his body has been responding to the Gleevec. His blood test that day revealed a low platelet count, which is one of the danger signs for Ty. He's been hovering in the upper 100's (175-190 range) for several months, but this test showed him down at 106. The normal range is 150-400 for platelets.
I asked the doctor if we needed to be worried about anything for our upcoming trip and he immediately got worried. We have decided that the mere thought of a week away with me stresses Tyler out completely, so his body's response is just his way of trying to avoid a honeymoon.**
Thankfully the doctor got the hint that we were going on our honeymoon regardless and came up with some alternate strategies. Tyler went in for another blood test this morning to see if Tuesday's test was in error. Unfortunately, today's test showed that his platelets dropped down to 86 and his white blood cell count had climbed from 7400 to 12400. Target range for his white blood cells is 4800-10800.
The doctor has taken him off Gleevec for the duration of our trip, but we DO get to head out of town. We could use some prayers that his platelet count climbs back up and he responds well to the Gleevec when he goes back on next week. We don't tell you this to worry you while we are out of town and unavailable; just a message to keep all of you up to date on our crazy life.
On the upside, we are flying to Miami TOMORROW to begin our long awaited honeymoon. We'll be cruising on the Carnival Valor to Belize, Cozumel, Grand Cayman Island, and Honduras. It's going to be so very great for us to get away and spend some quality time together over the next week. We'll take a bunch of pictures of the beautiful places we see and share some of them online when we return.
Much love to you!
**Tyler's theory is that the stress of talking to Farmer's Insurance Agents has caused the unusual spike in his WBC and drop in platelets. Also, the bone marrow extraction involves a needle penetrating his sternum, so he thinks that wound may cause some of the white blood cell spikes.
Tuesday, November 13, 2007
This was our fourth year (out of the last 5) and it was great to get back down to the BuenaVentura with some of our favorite people! The pool bar was as much fun as ever, although I think we played more cards there than ever before. Our hotel was under construction, so some of our regular areas weren't available.
Tuesday, October 30, 2007
So.. We've had some blog confusion on our end. Tyler wrote up a great (I assume) post about getting the test results, but it didn't get posted for all to read. Sorry for making you wait. Thankfully, my sister called and reminded me that I was letting you all down. I guess Tyler and I need to come up with something more interesting to talk about, so we aren't always waiting for doctor's visits or test results. Perhaps we could post our fantasy results each week! ;)
Anyways, the doctor's visit for the bone marrow results went okay. Dr M said that Ty is down to only 1 in 50 cells with the Philadelphia chromosome, which is a great improvement.
On the down side, the doctor was disappointed in those results. He was hoping we would be at complete remission by this point. He gave Tyler the option of increasing his daily dosage to 800mg of Gleevec or continuing at 600mg and retresting again in a few months. The standard dosage is actually 400mg, but our doctor said that patients who are able to tolerate a 600mg dosage achieve better long term results, so he started Tyler off there. Ty has handled that dosage with only a few symptoms, so it was a good decision.
There is concern, however, that if we increase is dosage to 800mg, that he might experience more side effects from the drug. Tyler opted to stay with the 600mg dosage, to make sure that he is able to continue working full time unhampered by side effects.
I think we were both a little unsettled after the doctor's appointment, but pleased that Tyler seems to be making progress still. Our next visit is right before our vacation to Mexico, so hopefully he gets good results from that. I'll be surprised if the doctor continues to see us every month. The recent blood tests have been pretty steady, so unless they are using the more sensitive tests each month, there wouldn't be too much to test on.
Thanks for your continued support, the prayers, and the friendship!
Monday, September 24, 2007
On September 12th, Tyler had a bone marrow extraction to provide samples for testing at the next level of remission. The bone marrow extraction can be quite painful despite the local anesthetics used. Basically the doctor sticks a needle into Ty's sternum and exerts pressure to suck some of the bone marrow back into a waiting vacuum tube.
Tyler did great in terms of facing the expected pain and actually said that this time was easier than the time they took his marrow in the hospital. The doctor explained to us that this is normal for many leukemia patients. At diagnosis, their marrow is so packed with extra white blood cells that it doesn't release as easily as healthy marrow should. The fact that it was easier this time is an indication that Tyler's health has improved.
Unfortunately, we are now playing the waiting game for the results. We have another appointment scheduled for October 8th to get the results from the bone marrow testing. In the meantime, we wait...
Tuesday, September 11, 2007
More about Gleevec
This comes from a mailing list I belong to, but is interesting in terms of the drugs to watch for over the next decade:
It's hard to believe how far we've come in CML treatment in just 10 years. To think that 10 years ago, we had little to hope for other than the horrors of Interferon but now the number of drugs that are being developed to treat CML is at a point where it's actually hard to keep up with all the information.
In case any of you are interested in learning more about the drugs that are being investigated. Here is a list of a few that I was able to find.
1) Sprycel. This drug is now approved in many countries and is also known as Dasatinib or "the BMS drug". It's a dual bcr-abl and Src inhibitor and many of our list members are already taking it.
2) Tasigna. This is widely available in trials around the world and is also known as AMN 107 or Nilotinib. It's a bcr-abl inhibitor much like Gleevec but more potent and again, a number of our list members are already taking it.
3) Bosutinib. This is another drug that is being used in trials around the world and is also known as SKI 606. It's a dual bcr-abl and src inhibitor.
4) INNO-406. This is a Bcr-Abl and Lyn-kinase inhibitor that is available at some of the bigger trial centers.
5) MK-0457. This is a drug that is being used to treat people with the dreaded T315I mutation. It's an aurora kinase inhibitor.
6) Homoharringtonine or HHT is actually an older drug that is also being used in various trials for the T315I mutation.
7) KW-2449 is an aurora kinase inhibitor that I don't know much about other than it's being trialed in a few of the bigger centers.
8) Lonafarnib is a farnesyl transferase inhibitor being used in some trial centers.
9) GX15-07MS is a drug that is being used in some centers for blast phase CML.
10) ON012380 is a drug that is supposed to be 10 times more potent than Gleevec and is being trialled in some Gleevec resistant patients.
I'm sure there are even more drugs out there in the pipe line that I've forgotten to mention but as you can see, we're living in very exciting times.
Here's a great website that lists some of the drug trials that are being done at MD Anderson if anyone wants to check them out further: http://tinyurl.com/2pnprg
And this site gives a brief summary of the Abl and Src inhibitors. http://www.medscape.com/viewarticle/559294_8
Sunday, September 9, 2007
Tyler got a call today from his oncology nurse. She says the doctor responded to Ty's test results via e-mail at 1am on Sunday -- that's dedication!
Anyways... The news is that we are going for the bone marrow aspiration this week as planned. It'll be a tough test for him, I think, but a good step in his treatment.
Wish us luck on Wednesday afternoon!
Friday, September 7, 2007
I am sorry to report that my results are a mixed bag at this point. My doctor is apparently on vacation this week in Montana, and they havnt been able to get him on email to look at the results. My main nurse has talked to me briefly about my results, telling me that one of the markers on my test had improved, and a couple others had remained the same. From what I heard from our conversation is that I have improved since my last test, but we arent sure if its enough for me to advance to the next stage of remission.
The conclusion from my conversation with her is that we will need to wait to hear from Dr. McGee before I will know if I am able to do my bone marrow aspiration next wednesday. I may find out later today or possibly monday.
Thursday, September 6, 2007
Thanks for asking about Tyler's test results last week. They took an extra tube of blood from him at his doctor's visit on August 27th, but we are still waiting on the results of the BCR-Abl test.
We have a bone marrow aspiration tentatively scheduled for September 12th, but will try to post results to the blog as soon as we have them.
By the way, we are requesting a Gold Balloon to carry in honor of Cathy Frank. Thanks, Bill, for sharing your story with me. We're proud to be able to honor your daughter with a special balloon for those lost to the disease!
Thanks so much for all of your support!
Monday, August 20, 2007
It seems Tyler took a turn for the worse last week and we don't know exactly why. His congestion returned and his energy took a downturn. We talked to his nurse on Friday and found out a few more medications that he could take for relief. Also, she said that even though he only took 5 days of antibiotics, the medicine would stay in his system for 10 days.
But after a rough weekend, he called the doctor again today and got wedged into their schedule. First, they asked him to stop and get a chest X-ray on the way in. Unfortunately, the X-ray didn't help them determine what was happening exactly.
At this point, the doctor's best guess is that he'll continue to fight this infection and feel better. If his coughing continues to get clearer and less often, than we are good. If he is feeling any worse, we have to go back in for a CT Scan to rule out a blood clot in his lungs.
We'll let you know when we find out something more.
Thursday, August 16, 2007
It's been a rough week for both of us. I woke up with a bad cold last Wednesday. I was feeling bad enough that I actually left work early and went home and climbed into bed. Tyler caught my cold (I think) by Saturday and just got worse and worse. It was reminiscent of the pneumonia he had just before the wedding. Tyler spent most of Sunday and Monday sleeping, which is very unlike him. He was also running a fever, so we called Dr. M's office on Monday morning and Tyler got a prescription for antibiotics.
On the third day of antibiotics he was feeling well enough to go back to work. When I checked with him this morning, he said he was better today. He still sounds congested, so that I don't recognize his voice on the phone, but he isn't coughing quite as much anymore.
It does make us a little bit nervous. We don't really know what medications he can take while on Gleevec, so it is tough to give him relief from his symptoms. They approved Tylenol for aches and pains, but we'll have to keep researching to find out what else he can take.
Tyler now promises to stay far away from me the next time I sick. I don't think he wants to go through this again. I guess that means I will have to take extra care with my health now too, so that I don't put either one of us at increased risk.
On a much more positive front, our friends Mark and Vicki just gave birth to their first child. We would like to officially welcome Collin to the world and we're hoping to be able to meet him in person soon.
That's the latest from our house...
Friday, July 27, 2007
Our visit with Dr. M on Tuesday was as anticlimatic as it could get! The machine they use to test Tyler's blood was broken, so we don't even know what his test results were this month. Probably the best news we got at the doctor's office was that at Tyler's 6 month checkup (next month), they will again test his BCR-abl level to see how much progress he has made. They expect that his blood will be negative for the bad chromosome and that we will have to progress to bone marrow tests.
We finally got our team set up for Light the Night, so you can now join Team Firefly at www.lightthenight.org. Thanks to those of you who have generously supported me already! I appreciate it more than I can say!
We are off to Bellingham for the weekend to abuse our bodies in another soccer tournament -- wish us luck!
Thursday, July 26, 2007
I am completely stalled on what to name our Light the Night Team and need to ask for your ideas.
Dad suggested Leukemia Skywalkers, which is pretty darn good. I was thinking along the lines of Tyler's Trekkers, but it doesn't have the ring that Dad's does. Do you have any ideas? If so, please post a comment on this message. Tyler and I will pick our favorite team name from all of the ideas we get.
Friday, July 20, 2007
It's hard to believe that most of July has passed with very little notice. We're due back at Dr. M's office next week for our next blood test update, but I don't expect anything too exciting there. Tyler continues to play soccer (and is looking better and better on the field). He's on a bit of a scoring trend here where he tells me that he might be too old to play and then scores a goal to emphasize the point. I'm not sure I get what he is saying yet...
I'm headed to Denver for my annual Stampin' Up! convention. I am looking forward to some fun stamping there and the chance to see some college friends who moved over there, but it seems like it is approaching too rapidly. I'd like to organize a few swaps to take with me, but my order of new catalog stuff just came in today. We'll see if I get extremely organized over the next week.
I've got my Light the Night registration in the system, but haven't gotten any confirmation on our request for a team. Tyler voted that we should be called Team Firefly. We had seen a performance from Faith Hill with her new song Firefly and thought it was appropriate. It's all about believing in your dreams and following your heart. We thought it worked both for "Light the Night" and for our thoughts on the song we heard.
I'm off to spend the weekend celebrating with my cousin, Nicole, a bride-to-be! See you soon!
Friday, June 29, 2007
We had another appointment with Dr. McGee on Tuesday this week and are pleased to say that Tyler's blood counts are still in the normal range. In fact, the doctor is so pleased with Tyler's progress that we don't have a blood draw or doctor's appointment for a month. While we enjoy all of the wonderful people at our doctor's office, it is nice to be free of the commitment to stop in there every two weeks.
One thing that I found particularly interesting at this visit was Dr. McGee's discussion of the Generation 2 and 3 drugs for CML. While Tyler is responding very well to Gleevec, the drug companies are racing to come out with better and better drugs for this disease. They are currently running clinical trials on the Generation 2 drugs and finding that they work well for folks who were not responsive to Gleevec. As time goes by, we may see patients who have been responsive to Gleevec switching to the newer drugs. While the doctor didn't give us a specific time frame for when he might be making a decision for Tyler to make the switch, he seemed to indicate that it was indeed something we might expect in the next few years. It's hard for me to believe that another drug would be even better for Tyler. He's responded so well to this one and has had so few side effects, that I am hard pressed to imagine a less invasive drug.
On another note, we are thinking about starting a team for Light the Night -- a fundraiser for the Leukemia and Lymphoma society. Anyone can participate in the walk or by offering donations. If you don't receive an invitation in the next few weeks and are interested in participating or contributing, please contact either one of us.
I think we'll be participating in the Greenlake walk on September 15th, but Washington has walks organized in Tulalip (Sept 15), Olympia (Oct 6), and Tacoma (Oct 6). If you live in another state and want to walk, we can look up a walk in your area for you to join and still have you on our team! The walks start at 7pm, with registration an hour before that. The course is about 2.5-3 miles on a flat stretch, so you can be at any fitness level and still participate. Keep your eyes out for more information!
If you already know that you want to participate, please feel free to post a comment on the blog. It'll be fun for us to see that someone actually reads this!!
Friday, June 15, 2007
We just wanted to send a big thank you out to the fathers in both of our lives! We have been blessed to be introduced to sports by our fathers and both of us developed a life long love of soccer due to that influence. Each of you (Dave, Scott, John, J.B., Jim, Chuck, and Andy) have helped to shape us into the people we are now -- and we think you did a darn good job!
Friday, June 1, 2007
Hello everyone, it is now June and things keep getting better every day! Earlier this week I had an ultrasound on my spleen to see if it had returned to its normal size. I received a call from the doctor yesterday and was told it had indeed returned to normal. This means that I can be active without worrying about damaging/puncturing my spleen.
I was able to join the soccer team last night for the first time since last november for outdoor soccer. It was such a great feeling to be out on the field again! I was able to play most of the game without getting too tired, but had to take several water breaks.
Work is also much better for me as my energy has increased steadily, and I feel I am getting close to 100% again. The chemotherapy medicine they are treating me with has been so amazing for me. Not only is it searching out and destroying the mechanism in my body that creates the "bad" white blood cells, but I feel better than I have in probably two years! I have minimal side effects with this medicine also, which is lucky because many people do have problems with side effects including nausea.
I have so many things to be thankful for, including all of you that have prayed for me, thought about me, and helped me get through this initial part of my battle with this cancer. I am so thankful to have Mandy in my life as she keeps me grounded and always looking forward to each day!
Thursday, May 31, 2007
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!
Thursday, May 10, 2007
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!
Thursday, April 26, 2007
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,
Thursday, April 19, 2007
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!
Thursday, April 12, 2007
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.
Monday, April 9, 2007
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.
Thursday, March 29, 2007
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
Wednesday, March 28, 2007
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)