Packing it On

Tyler has decided that he needs to gain another 30 pounds.  I think he wants to get back to his "fighting weight" from his pre-transplant days, but he still looks pretty good to me.  What do you think?

Tyler actually tells me that his dad and brother have started to call him "Belt Loop" because he had to add an extra notch in the belt to be able to hold his pants up.  He's lean, but not mean!

Thankfully, his appetite is back to normal and he is eating a wide variety of foods again.  A lingering side effect from his many challenges with mucositis is that he strongly prefers moist foods.  I think his saliva production still isn't back to normal, despite the appetizing cooking being produced in our kitchen.  Thankfully, Tyler and Gump have dubbed me the Soup Nazi as a tribute to the many different soups we eat at our house.

Janell's Battle

My friend and coworker had her transplant on Friday, July 2nd.  We remember how painful those first few weeks were and wish her strength to get through it and a very quick (and healthy) engraftment!

If you are curious to see more about Janell's journey, you can click on the link to Janell's Reflections on our website.

Hallelujah!

The doctors gave us the best news today!  Tyler FINALLY had white blood cells!  He had .110 count today, with the normal range being about 4.3 - 10.0.  It's a small amount, but definitely a step in the right direction.  Now that he has white blood cells coming in, his healing should actually speed up too.

He's had a decrease in the pain in his sides too, so we are dancing in the halls of UWMC!

MRI Results

Today marks the last day of our first month in the hospital.  We were prepared to stay this long, but hoped that it would prove true.  There is still no sign of white blood cells (WBC), which is one of the things keeping us here.  I checked the blog history and found that Tyler's first brush with induction therapy had us waiting 2.5 weeks from the end of chemo for the WBC to return.  We are just a little bit over 3.5 weeks now, although it seems much longer.  Since the body is much more sensitive to treatments after a bone marrow transplant, this is not totally unexpected.

Tyler had another MRI on Tuesday, so I have been anxiously awaiting the results so that I had something to post about.  The doctors said that his marrow looks like it has more fat in it now (I didn't know you had fat in your marrow), but the chloromas are still there.  We were hoping that they had reduced in size after the potent treatment Tyler had last month.

On the upside, he has had a series of relatively good days recently.  He had been flirting with beverages for the last few days (juice, jello, smoothies, milkshakes), but today he branched out into the territory of Cream of Wheat and ENJOYED IT!  He says eating or drinking cold things causes his throat to sting, but the cream of wheat slid right down without any pain.  I'm delighted that he had a good breakfast!

Temper Tantrums

I don't know why, but this morning I seem to be throwing a temper tantrum.  It's just not FAIR!

While I am thankful for the many blessings in our lives, I am also envious of those being denied to us right now.  The simple pleasures of sleeping in our own home or eating a meal together seem so very precious when they are denied.  We are approaching the end of a month solid in the hospital and are both extremely tired of this. Tyler can hardly sleep at night because of worries that he will choke on his own saliva.

We really just want to live a normal life!  In fact, boring sounds quite wonderful...

Thank goodness we had a year or two together before we got married, as our entire marriage has been overshadowed by this darn battle with leukemia.  Sometimes we can forget about it for awhile, when Tyler is feeling good and strong.  But it seems like we are always drawn back with a new outbreak.  In fact, those relapses seems to happen anytime I want to travel....  Do you think Tyler is trying to tell me in a subtle way that he doesn't want to travel as much as I do?

I am envious of the family and friends who have started families of their own and are watching their children grow.  We would love to have a family, but treatments have made that unlikely without adoption and our lives are really too crazy right now to add more complications in...

Tyler is sick of being stuck in the same room, mostly in bed, every day.  I am sick of wrestling with whether or not I am making the wrong choice every time I am doing something other than being with him in the hospital.

I know everybody has their own demons and that no life is as easy as it looks.  But for today...  I am thoroughly disgusted with our personal battle and would love to call a cease fire for a few years (or decades?!).

Future Treatments

One of the tough things that we learned this week is that there aren't really many treatment options for Tyler, even after we get through with this.  I am not really certain how to deal with this news yet, but here is what we have learned:

1. Donor Lymphocyte Infusion: One of the options for Tyler was to give him more of his Dad's cells to try to boost up the transplant and increase the Graft versus Leukemia effect.  After much testing at the SCCA, they have determined that this will not work.  Tyler's leukemia has figured out how to mimic the donor cells to avoid being killed off.  Basically, Tyler and his dad are getting along far too well.

2. Clinical Trial:  Another option that we were considering was a clinical trial for one of the fabulous new drugs under development.  Unfortunately, the drug companies will not take Tyler as a candidate for their study because of the central nervous system involvement.  If we can prove that Tyler's spinal fluid has been clear of leukemia for at least 3 months AND all of the chloromas have disappeared, we might be able to beg our way into a study in the future.  We're not sure what to do in the meantime though to keep Tyler's disease under control until then.

3. 2nd Transplant with a new donor:  This option hasn't been completely ruled out, but still isn't a real strong possibility.  Basically, the conditioning regimen to prepare for transplant would be tough on Tyler in his current state and make it harder for him to come through the process successfully.  Additionally, it takes time to find a bone marrow donor.  There just aren't enough people on the registry to make an easy match for everyone, and Tyler was told with his first transplant that he would be tougher to match.

So right now, we continue to work towards getting Tyler healthy enough to come home.  After that, we don't really know what we will be able to do to keep fighting a particularly nasty disease.  Here's hoping some inspiration comes in the next few weeks!  Our goal is to get him home and get him feeling a little bit more normal so that he can actually enjoy some of his time, while still fighting the battle as long as we can.

With all that we have learned this week, I would say that prayer for a successful treatment option would be especially appreciated.  Many thanks for sharing this journey with us and helping us to continue fighting.  We are touched by the thoughtfulness of the family, friends, and even strangers that have encouraged us in our battle.

Still Waiting...

They still haven't been able to remove Tyler's neck catheter.  They could only get his platelets up to 31 yesterday, so the surgeons wouldn't do it.  They tried to schedule the surgery for today, but I guess that the surgeons couldn't find the room in their schedule.  Hopefully tomorrow will be the day....

Tyler continues to get better at moving around again, so that is great news.

He has finished his chemo treatments, so now we are just cruising towards the bottom of the trough and hoping to improve again afterwards.  The worst day is supposed to be somewhere about 10-14 days after the first chemo treatment, so we have a few days to go until then.  He is experiencing increased pain in his mouth and throat, which makes it difficult for him to eat right now, but he is a trooper!

He has Magic Mouthwash, which is a mixture of lidocaine and benadryl, to slightly numb up his mouth throughout the day.  The cells lining your digestive tract are short lived cells, because we have to be able to eat things after burning our tongues or such.  Because of this those cells are particularly responsive to chemotherapy and can lead to sores and ulcers, mostly in the mouth.  With the radiation that Tyler received before his transplant, he got really bad mucositis in his esophagus.  This time the sores are located in his mouth, more than his throat.

We are both hoping that the sores don't get so bad that Tyler has to stop eating, but the doctors are prepared for that just in case.

Looking for more platelets

The doctors have given the authorization to remove Tyler's neck catheter, which will really improve his comfort and mobility. The surgeons are requiring that Tyler have a platelet level of at least 50, which is probably a good idea with all of the bleeding he did at the installation!

They couldn't get him quite high enough yesterday, so will be giving him a couple more bags of platelets today to try to hit that magic number. As a side note, I want to encourage you to donate blood. The platelets (and red blood cells) that Tyler will be receiving come from donations in the community and are essential for keeping his body functioning through the chemo process.

Another good note about yesterday is that Tyler is finally out of isolation! I spend the majority of my day in the room with Tyler and hated sitting around in a gown, mask, and disposable gloves anytime I was in the room, so I am celebrating this more than anyone!

We think today is the last treatment of chemo, although he will continue to trend downwards in blood counts for at least another week, before turning the corner and heading back towards normal counts.

He is feeling a little bit stronger and has his 2nd physical therapy appointment today.  His goal is to increase his strength enough to be able to walk around the room unaided, which he isn't really able to do right now.  After that, we will be able to progress to walking in the halls and building up his strength again.

Looking for the Right Trail

With our meetings last week, I felt a little bit like we were lost in a forest and looking for the trail that would get us back home. 

The net result of the meetings is that the doctors don't know exactly what to do now.  We are pursuing some options with Clinical Trials out there, but our doctors have no say on whether or not Tyler will be able to join.  We are waiting to hear back from the study investigators.

He has signs of leukemia in his spinal fluid again, which is an exclusion criteria for the study that we are most interested in, so treating that is our first step.  Tyler will be receiving chemotherapy with injections into his spine for the next little bit of time, most likely two times per week.  He has had lumbar puntures throughout the process and they are not much fun.

Despite the news of frequent lumbar punctures, Tyler's spirits are good right now and the pain he was experiencing is completely gone.  He stopped taking the pain pills at the end of last week and is enjoying a return of his appetite with the switch away from Interferon.

So basically... things are good right now, except for the fact that we can't find the trail.

Thanks to all who continue to support us!  We feel so very blessed to have you in our lives and hope that we can repay the favor and encourage you when your spirits are low.

Can We Make a U-Turn?

With great regret, we must share that Tyler's disease appears to have advanced again.  We went through a full day of testing today, to try to get more information about what exactly is happening and what we can do to fight it, but we are VERY discouraged by this news.

Over the last week, Tyler has had increasing pain in his upper back and shoulders.  As we took a short trip to celebrate our 3rd anniversary, he initially attributed that pain to sleeping in unfamiliar beds.  Unfortunately, the pain got worse each day -- even after we returned home.  We were in contact with our oncologist on both Monday and Tuesday, with the recommendation that we go to the ER if Tyler was in too much pain to handle.  On Tuesday, we finally did just that.

In the ER, we convinced someone to get an MRI for Tyler's back to see if they could see anything that might be causing his pain.  We were absolutely shocked when the ER doctor came in to tell us that it appeared that Tyler had tumors of some sort up and down his spine.  Much of what she said didn't make sense to us, but the doctors there were able to give Tyler some stronger pain medication (compared to Tylenol at home) and he finally got a little bit of relief.

On Wednesday, we got an appointment at SCCA to find out what was really going on.  While there, we learned that leukemia CAN form solid tumors of white blood cells, although this is rare.  We also learned that Tyler's blood test from that morning was showing blasts.  Blasts are immature white cells that don't really go any of the work they are supposed to do, compared to partially developed white cells that are just lazy (more common in chronic leukemias).  In the phases of leukemia, showing a high amount of blast cells indicates that the disease is progressing to the next stage.

With the fact that Tyler's pain increased rapidly over the period of one week and he showed blasts 1 month after his last test at SCCA, this is NOT a good sign.

While at SCCA on Wednesday, we learned that Tyler has 2 tumors along his spine that are causing him problems, although others likely exist.  One is causing the pain in his back and the other is causing numbness in his hand.  Additionally, a new mass has been identified in his upper left chest area.  They biopsied the mass on his chest today, and are talking about radiation possibly shrinking the tumors in his spine.  One concern about getting radiation at this point is that Tyler has already received so much, he might not be able to handle more.  Each body has a limit to how much it can receive.

Thursday's blood test showed even more blasts than the previous day, so it is likely that whatever we do will have to happen very soon.  While we wait for test results and more meetings with doctors next week, please do keep Tyler in your thoughts.  We are both so very discouraged that his journey is not yet over.

The Battle Continues...

We met with the doctors at SCCA today to get the results of Tyler's testing.  Sadly, they tell us that the leukemia is back in play in Tyler's body.  We had seen signs of this in his blood tests, but the ultimate sign that he needs some additional treatment came from his bone marrow.  They'd hoped that the marrow would be clear, and only the blood was showing signs of the disease, but this was not the case.

The doctor strongly recommended that Tyler continue with plans for a Donor Lymphocyte Infusion (DLI).  This means they will draw blood from Tyler's father (who graciously donated marrow about a year ago) and separate out the white blood cells.  Tyler will then get a blood transfusion of just those white blood cells.

The idea behind his treatment is that Scott's white blood cells should recognize that the leukemia is not supposed to be in Tyler's body and attack it.  This is known as the graft versus leukemia effect.  The downside is that Scott's white blood cells will also think TYLER'S body looks foreign and attack him as well, causing a new round of Graft versus Host Disease (GVHD).

The doctor said that the response rate for this treatment has been very good, but of course we are concerned about the possible side effects.  Tyler really wants to get back to work, but is worried that the GVHD will make that difficult.  We'll just have to take that as it comes though, since it is not a guarantee.

Happy Re-birthday, Tyler!

Tyler is celebrating his first Re-birthday today!  Will you join us in wishing him a clean bill of health?  That would be the best gift ever!

Monday's Testing

Today went really well at SCCA!  Tyler had about 10 tubes of blood drawn for various lab tests to kick off the morning.  Then he had a comprehensive physical looking all over for any signs of Graft Versus Host Disease (GVHD).  He did show small signs in his mouth, but in general they rated him as not having GVHD.

Then, the team cancelled 2 of his appointments for tomorrow and 2 of his medications (at least until Thursday's final conference).  His blood test results showed that he was well within acceptable ranges.

Finally, he had a bone marrow aspirate (to which they added a bone marrow biopsy and a skin biopsy).  It was fairly uneventful (thanks for the lovely drugs they give him) and the fact that they got marrow on the first attempt.  He's a little sore now from the bone marrow procedure, but we'll have a low key evening and he should be feeling better by tomorrow.

Thanks for all of the prayers for his good tests.  Our friend, Hans, has his 3 month bone marrow aspirate tomorrow, so we would ask that our friends say a prayer for his test results as well.

Studying for his Finals

Wednesday marks the 1 year anniversary of Tyler's bone marrow transplant, so we have been invited back to SCCA for testing.  They prepared us for this during the preparation phase, explaining that transplant patients get tested for about a week at the 1 year mark.

We kick things off with a questionnaire detailing all of the possible symptoms that Tyler might be experiencing and a bone marrow aspiration on Monday.

On Tuesday, Tyler will get a Pulmonary Function test (to evaluate the health of his lungs), a dental exam (to look for signs of GVHD), and an eye test.

Wednesday is a quiet day, but he will get all of his vaccines on Thursday and evaluate his medications at that time.  I really hope that they decide he can taper off some of his current medications now that he is passing the critical 1 year mark.

Tyler has been studying hard so that he can pass all of his tests, but a little help from friends and family wouldn't hurt either!

Stubborn Little Suckers!

Tyler had just begun his first day at his old job, in preparation to return to work in January, when he got a call from Dr McGee.  The doctor told Tyler that he needed to come in for an appointment the following day to talk about a recent lab test.  Tyler called back to their office a few times trying to get more information, but no one could tell him anything futher.

Let me just step aside from my story for a minute to share a little fact that you could probably figure out.  It was extremely difficult to wait for 24 hours, wondering what the new information would be?  It ruined Tyler's first day with his work crew and our evening, as we worried about what exactly the bad news would be.  If you are a doctor or know a doctor, please tell them that bad news over the phone is infinitely better than bad news after a 24 hour wait.

After sharing our thoughts on that subject with our own doctor, we discovered that he was concerned about Tyler's latest BCR-ABL test results.  They showed a tiny bit of leukemia cells floating around in Tyler's system.  We had actually seen a test result from October that showed the same amount, but Dr McGee had indicated that a subsequent test showed no signs of leukemia so the October test was probably a fluke.

The amount of Leukemia shown as a ratio on this test was .02, which isn't uncommon for post transplant patients. In fact this ratio is in a range that shows that the chance of relapse is very unlikely. We want the ratio to be 0 however (negative), so we have discussed the possibility of another procedure. The goal is 100% remission.  On December 3rd at Puget Sound Cancer Care the test came back 0 (neg), and the same test done again on December 6th at SCCA came back as .02 again. The range for "very unlikely to relapse" is 0-0.10.

Dr McGee is referring Tyler back to SCCA for testing and possible treatment.  Most likely, Tyler would get a Donor Lymphomcyte Infusion.  This is like a booster shot of white blood cells from his father, that should stimulate the marrow to attack the leukemia cells that are floating around in there.  The goal of this treatment is to get Tyler back into full remission, but would likely cause a recurrence and possibly an increase in Tyler's Graft vs Host (GVHD) symptoms, but would also increase the Graft vs. Leukemia effect (beneficial). I know this all sounds very complicated, but we are working through this and finding out about the procedure.

Tyler would NOT have to endure the chemotherapy and radiation again with this treatment though.  It would be very similar to getting a blood transfusion, although his Dad's blood would be collected and boiled down to just the white blood cell part.

We have not yet committed to this treatment, but expect to learn more about it during Tyler's one year follow up appointment in a month.

Road Trip

I was fortunate yesterday to be able to spend a full day with Hans, as we traveled down to Portland to ask some important questions about his CML. We were able to catch up quite a bit, and rehash good times and bad times. Hans and I have known each other for the better part of 10 years now, and been through quite a bit......especially recently. We met through soccer years ago, and have shared many good times. I think most everyone that visits this site probably knows by now, that Hans was diagnosed with CML last fall when I was at the beginning of my transplant preparation.

When Mandy told me that Hans had CML, I was completely dumbfounded......and it felt like a train had just driven through me! I instantly and for quite a long time thought about everything Mandy and I had gone through about hearing the news at my diagnosis, as well as thinking about everything Hans, Cynthia and his family must be feeling upon hearing that news. It was really quite devastating, especially considering I was in pretty bad shape psychologically at the time anyway. It was so strange that now along with our friend Darren Rozendaal who had gone through a transplant about 5 years ago now, we now have 3 guys from the same soccer team facing the challenge of cancer at such a young age. It seemed and still does seem unreal to me!

Back to the road trip...........Hans had scheduled a visit with a doctor in Portland who is the author of a clinical trial with a 3rd generation CML drug that is currently being tested in approximately 40 patients with some very good signs. He wanted to discuss the trial with this doctor and not only see if he would be a good candidate, but get some thoughts on his journey with cancer so far. Hans is very much ahead of the game when it comes to this battle, as he has done an amazing job researching, tapping into others experiences, joining CML groups online, and anything he can to be at the forefront of the battle against CML. I was so impressed with his questions, his candor, and his preparation for the meeting with this doctor. I'm not sure why, because I should expect it from him. His reasons for checking on this are that he has not shown a cytogenetic response to Gleevec or Sprycel, and must now consider his next direction.

We really do hate that we have this in common, but there is nothing we can do about that but fight on together with our family and friends. I think in some ways it has made the challenge of fighting cancer easier to deal with, but in other ways it has made it more difficult. Sometimes too much information can weigh heavily on the mind. I know what he, Cynthia, and his family are going through right now and it is very unpleasant to deal with. We discussed yesterday that everyone in one way or another has, is having, or will have to deal with something similar or much worse in their lifetime. With that in mind we choose to move forward and deal with each challenge as it comes.

I am very confident that Hans will recover from CML, and join Darren and I and countless others as "Survivors". I would like to ask everyone that reads this post to send positive thoughts to Hans and his family as they deal with these challenges.

Next week I will be going to my one month check-up for signs of GVHD at SCCA. At that time they will probably determine if the GVHD is progressing and whether or not we need to treat it with immunosuppressants. Prednizone was mentioned as a drug I may be taking, and I will have an update next week after I find out the next steps. It is good in many ways that I have some GVHD, because it means that my father's bone marrow is prepared to battle anything foreign to it.....not only my body, but any Leukemic cells that may try to come back. It is a fine line treating GVHD, because you dont want to treat it so strongly that your immune system becomes too weak again but you must treat it some to prevent it from getting out of hand and damaging organs, eyes, and other important body parts.

I also had a visit with my oncologist at Puget Sound Cancer Care (so nice being back with them)........and my blood results(white blood cell count, red blood cell count, and platelets) look great........my chemistry panel, Potassium, Magnesium, etc.... all look great. Some other things that have been slightly out of whack are normalizing, and overall things are looking really good. The amount of medicine I have to take has been getting less and less, and I've been feeling good overall for awhile now. My visits to the doctor are approximately every 2-3 weeks now, and I will be having my one year checkup (post transplant)at SCCA in mid-January. At that time they will do a full inspection, and I believe a bone marrow aspiration to see if Im still 100% my donors bone marrow and cancer free. They did do a couple of these post transplant already, and I am at this point "cancer free", and 100% my father's bone marrow! I know I am repeating myself, but it is still very exciting! Next I am looking forward to becoming a contributing citizen again, and returning to work hopefully a couple months from now. Fingers crossed!

Sorry to be so long winded, but yesterday really rekindled many thoughts past and present!

Tyler

Waiting Game

Tyler survived a marathon doctor's appointment at SCCA, but overall it was a good thing. They confirmed that he does have GVHD, but are waiting on the results of a pulmonary (lung) function test he took in the afternoon. I ended up being sick on Tuesday and couldn't join Tyler at his appointments, but I hear he tracked down many of the staff members that we interacted with over the last year. The people were definitely the very BEST part of our time at SCCA!

Tyler's mom was also in town for the day, so she was able to drive him home after his appointments and catch up the latest and greatest. She made me realize that some of the improvements that I take for granted now should be shared with those of you who have joined us on this journey.

- Tyler is now walking without his brace about 90% of the time. He was getting stronger with the physical therapy, but decided in August(?) to try going without the brace more and more often. He's now golfing without and credits his best score ever (a 74!) with the ability to rotate his ankle again!

- He got his 1st Post Transplant hair cut and is looking really good (especially on the days when he shaves)! I promise to post a picture soon.

- He's able to eat anything he wants, as the end of his immunosuppressant drugs (Tacrolimus) means the end of a restricted diet! Bring on the blue cheese!

- He still isn't back to work, but considers it occasionally. He's been working to build up his strength and endurance so that he can resume his job as soon as possible. There are some concerns that the nature of his job (groundskeeping) may pose risks beyond just the physical toll, so we're doing what we can to consider all work options.

Back to Where it Began

When Tyler had his checkup with Dr. McGee last week, he mentioned that he was having some mouth soreness. They called SCCA, who requested some photos of Tyler's mouth. It appears that he is finally showing a few more signs of Graft-vs-Host Disease (GVHD) which is a mixed blessing for us. Some GVHD reduces the risk of a leukemia relapse, but it also carries a risk of damage to his organs (if left unchecked).

The end result is that we are headed back to SCCA to meet with their long term follow up team on Tuesday. Hopefully this is just a one time appointment, but we'll likely learn more when we get down there.

Other than the mouth sores, Tyler continues to thrive. He is building up his strength and relearning skills he had lost (like how to fill the dishwasher).

Fiesta in Chelan

My side of the family held a week long reunion at Lake Chelan, thanks to my grandparents' generosity. I wish I could have spent more time with my family, but I thoroughly enjoyed every minute that I could steal away!

One family brought mustaches for us to wear during Mexican Fiesta night and Tyler and I are proudly modeling ours in the photo. I'm thinking we should both grow real mustaches after seeing how dashing we look with our taped on version. Actually, you can't see how much hair Tyler has grown over the past few months, but he is looking pretty sharp again.

There were 4 babies born into our family in the last year and it was a beautiful thing to get to see them becoming more like little kids and less like little babies. All of the kids (including the older Mia, Abbie, and James) inject so much life into family gatherings... I hadn't realized how boring I had gotten as an adult until I got to start playing with kids again.

Several months ago I posted a picture of me feeding my cousin's daughter, Audrie. You can see the original photo here.

Audrie today looks like this:



Isn't she adorable?? She was a charming little girl, filled with smiles! I think she could steal Tyler away from me, if she was just a year or two older!

As you can see from the lack of posts, life is incredibly good for us these days! Tyler is starting to do more exercise without his foot brace and notices increased movement in his foot. The photosensitivity in his eyes is much improved, so he finds it easier to be outside on sunny days again. He looks FANTASTIC and we are just so very thankful that we have come through this journey with his health coming back. Many thanks for traveling this road with us!!

6 Months Out and Going Strong!!

Today is the 6 month anniversary of Tyler's transplant and I am thrilled to report that he is still doing well. He has some mild Graft vs Host Disease (GVHD), mostly affecting his eyes, but is improving in strength and health otherwise.

Thanks so everyone who has helped us travel this path! We're excited to see that our "infant" Tyler is making such amazing progress. In fact... He doesn't have to see the oncologist for 3 weeks (our longest break in a long, long time)!

We hope that you are surviving this crazy heat wave!