Cruise Control

We continue to be on Cruise Control here at UWMC, as Tyler's mouth continues to heal bit by bit.  I've still not heard that he has a white blood cell count yet, but that would be because I have had to be at work during the doctor's rounds to see patients.  The doctor did say that the mouth improvement is a good sign that counts will soon recover.

Tyler is starting to lose his hair again from the chemo treatments last week.  We kind of expected it earlier, but will have to dig out his hats again to keep his head warm.  It actually boggles my mind that 5 days of chemo about a week ago would be responsible for his hair loss today.  It seems like all of the side effects should happen at the same time as the induction therapy, but that certainly isn't the case.

He hasn't had any more breathing scares since Wednesday, so we are starting to relax a little bit more each day.  He has been dozing throughout the last couple of days, when not interrupted for a bone marrow or lumbar puncture.  His rash has faded a little bit more, but still causes him some discomfort.  He's not really up for company, so we haven't reached out too much.  If we could just get his sides/muscles to heal up, he could get out of this room and walk around the floor a little bit.

As for me, I am excited that we finally made it to the weekend so that I can spend a little extra time with my handsome husband.  Although... I think I thoroughly annoyed him this evening by asking him endless questions.  I miss talking to him, so I try to have "conversations" where I ask him yes/no questions.  It really isn't the same thing, but talking still hurts for Tyler so we definitely can't have real interactions like we normally would.  Plus, he feels like he is in a drug fog much of the time.  I think he has big plans for the days when they finally wean him off all of this junk again!

The Good Drugs

Unfortunately, Tyler's mouth pain has continued to increase and he is finding it very difficult to talk or eat.  They hooked him up to the morphine pump yesterday and will be starting TPN (IV nutrition) today.  He continues to try eating a little bit during the day, to keep his system reminded of real food, but it is very hard on him.

With the morphine able to dull some of his pain, he has been sleeping a lot yesterday and today.  I think that is probably the best way for him to cruise through the next couple of days as the pain is at its worst.  They always use a pain scale of 1 to 10 around here, and Tyler says that swallowing is in the 4-5 range, even with morphine.

He is getting a lumbar puncture sometime today, where they will capture some spinal fluid to test it for signs of disease and also inject some methotrexate chemo to make sure no disease can take root in his spinal fluid.

Hoping for the Best

Right now we are just playing a waiting game.  Tyler has had two lumbar punctures that tested with no signs of leukemia in his spinal fluid, so we are thrilled with that good news.  However, his white blood cell count is dangerously low right now, which puts him at an increased risk for illness.

Today he is getting an MRI to see what changes (if any) have occurred with his tumors down his spinal column.  I think they will have shrunk, but the best news we could get would be that they have gone away completely.  We're definitely hoping to get the results of that test read as soon as possible.

There is also a very strong chance that Tyler will have to check into the hospital to get some high dose chemo that will knock his leukemia completely out.  If that happens (which looks likely at this point), we are looking at another 4 week stay at a local hospital.  We're hoping to keep him healthy enough at home that this doesn't come to pass, but sadly we may not have a choice.

We hope to know more at the end of the week.  Many thanks for the prayers and encouragement on Tyler's behalf!  We hope that our next approach to the folks in the Ariad trial will be the one where Tyler is accepted.  Getting accepted into that study is our first choice (and our oncologist's first choice) in treatments at this point.

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.

Day 51 - More Than Halfway Home

We are more than halfway to the miraculous 100th day! Can you believe it?!?

Tyler is doing fairly well these days. His potassium level has fallen back to the 4-5 range, which is still at the high end of the normal range but is less dangerous. On Thursday, he measured 4.7 for his potassium level. We are allowed to eat some normal food again, although they warned him not to go crazy.

His test results from Day 51 were:

WBC: 7.62 (normal 4.3-10.0)
HCT: 30% (normal 38-50)
ANC: 5.4 (normal 1.8-7.0)
PLT: 73 (normal 150-400)

In the weekly clinic, Tyler was given permission to drive again! Talk about FREEDOM!!! He's still not supposed to be alone for more than a few hours because of the possibility of an infection, but we are thrilled that one of his lost privileges has been restored. Since he hasn't had any pain medication in weeks and hadn't had any anti nausea medications in several days, there are no restrictions on operating heavy machinery.

He also had his 2nd post transplant lumbar puncture (LP) after his clinic Thursday. When I called to check in on Thursday afternoon, Tyler was in a great mood. Apparently, he had one of his best days in a long time. Normally Tyler's LP's are painful and dreaded all day long. Basically, they are trying to slide a needle into his spinal column, avoiding all bones and nerves in there.

With the first LP, they determined that Tyler's back is too muscular (after years of landscaping and sports) to get a good placement in his spinal column while essentially "blind". Since then, we have actually had LP's done under fluoroscopy. They use x-rays to guide the placement of the needle.

Even with that technology, they seem to find it difficult to get a placement that will allow the spinal fluid to flow out easily. He gets several attempts each time and they end up having to tilt the bed to different angles to get the spinal fluid to flow out.

This Thursday, however, they got the poke perfect on the first attempt and the spinal fluid started to flow without having to help it along.

Added to the great doctor's appointments, Tyler got to enjoy some AMAZING sporting events (with Washington teams dominating) and he had his first vanilla latte in months.

Day 38 - Cruel and Unusual Punishment

Tyler had his potassium check on Friday morning and we did not get a call from the nurses, so I expect that the test didn't show an increase. We had to run from SCCA to the University of Washington to make Tyler's lumbar puncture (LP) appointment, so we didn't a chance to wait for the results.

Tyler will be getting 4 LP's spaced about 2 weeks apart. They will be watching for signs of leukemia in the spinal fluid, as well as injecting chemo in to make sure no disease can take hold in there.

This first one was one of the bad tests. Most of the time, they have to poke Tyler multiple times to be able to get a good flow of the spinal fluid. With yesterday's LP they had to poke him 3 times with only some lidocaine to numb the skin. They seem to think no major drugs are necessary, but it's always been painful for Tyler. With all of the hard work he has done as a landscaper and athlete, he has good strong bones to poke through.

Added to that, they didn't allow him to eat for 6 hours before the procedure. He was hungry and weak and feeling nauseous by the time we were are our doctor's appointments. I can't understand why they schedule tests that require fasting for 2pm!? Do you think that would qualify as cruel and unusual punishment? I think that after factoring in the poking into your lower back, the injection of chemo, and the headaches that occur with the change in spinal fluid pressure... We've got a winning case!

Scheduling Challenges

Tyler had a long day today, although most of the time was spent waiting around. He had an 8am appointment at UW and then 11, 12:30, and 1:30 appointments at SCCA. The biggest challenge of the day was that he wasn't allowed to eat before his 1:30 appointment, so he was hungry the whole time he was sitting around.

I was supposed to take him to his appointments, but opted out for illness reasons. I've been feeling a cold building for a few days and finally had a sore throat last night in this morning. The SCCA's policy is that patients can go to their appointments when ill, but must wear a mask. Caregivers and other visitors must stay home if sick, as they do not NEED to be at the appointment. I hate the rule, but probably should follow it.

Since early fall, we have actually had to fill out a form before proceeding to any of our SCCA appointments. They ask if you have had any signs of a cold or the flu in the past week. Both patients and their companions are supposed to fill out the form and get a sticker in return that says "I've been screened."

So... Andrea (Tyler's mom) took him to his appointments and I went to work instead. Isn't that crazy? I was sick, so I DIDN'T take a sick day from work. But... it was good to save my leave for another day when I can be of more assistance. And I was able to teach the class I had asked a coworker to cover for me. And just for the record... I DON'T recommend going to work when you are ill. I'm just crazy.

Unfortunately, I also have to keep some distance from Tyler at home too. I have to remember not to kiss his gorgeous face as I might unintentionally pass along some of my germs. Let's hope that I get healthy soon. I had planned to work Thursday and Friday of this week, while Andrea took Tyler to his appointments.

Tyler reports being tired and achy today, and reported a slight temp during his evening nap. Other than that, he looks good. They reduced his TPN (IV nutrition) dose today, so he'll be eating more and more over the next week. Things are definitely moving in the right direction now. We just have to get him as healthy (and now me) as we can over the next week, so that he can be successful during the transplant.

Thanks for cheering with us about the results from the lumbar puncture. It's great to have so many friends and family members cheering with us!

The Next to Last Puncture...

Today was a big day for us. Tyler's transplant protocol officially begins next week, IF the results of today's lumbar puncture show no signs of leukemia in his spinal fluid (CSF). I'm nervous about the wait to next week to get the information back, but there is nothing to be done other than wait. The doctors essentially told us that they don't know what they'll do if the spinal fluid is not still clear. I'm glad they are checking, I really am, as Tyler's transplant is certain to fail if there is any leukemia in the CSF. But at the same time, I really want to know and start dealing with the answer. We've been plagued with bad news throughout Tyler's treatment, so it's hard not expect it. I'm praying hard that everything will be a "go" for transplantation on schedule.

We also met with the GI doctors to find out why Tyler is still struggling so much with eating. He doesn't feel a great deal of nausea day to day, but struggles to have an appetite and to keep his food down consistently. The leading theory after their investigation is that Tyler's medications are responsible for his stomach discomfort. We're switching out one of his medications over the weekend to see if that helps. Sadly, I'm now thinking that it won't.

Happy New Year to all! We wish you good health and good cheer for 2009.

Mandy

Sleeping Beauty -- Already Has His Princess Charming

The medicines that Dr Johnson prescribed have worked WONDERS for Tyler! We got home about 3:30 or so that day and Tyler went straight up to take a nap. He slept from 3:30-8:30pm, got up for about an hour, then slept from 9:30-3:30, took a little bit more medicine, and slept from 3:30-6:30 (when we had to get up for the doctors appointment on Thursday). Even after the 1st nap, Tyler said that he felt much improved.

We had a Thursday morning appointment at SCCA for a Bone Marrow Aspiration, so we braved the snow and ice to get down there. Actually, our commute went pretty smoothly, thanks to the Subaru! It snowed the entire time we were down at SCCA, but we got home without any problems about 11am. Tyler had some lunch and then went up to take another nap.

This morning, when he woke up, he marveled that he had actually slept for 16 of the last 17 hours. I'd say he is well on his way to catching up on sleep, although he is down for a nap again this afternoon. I'm hoping that I'll get a chance to see him for dinner tonight.

I've been keeping busy working from home and baking cookies for my work's Christmas Cookie exchange. Sadly, it's been rescheduled again from Thursday to Friday to Monday because of the snow. I'm thinking that gives me the perfect opportunity to bake some more, right?

His nurse, Jackie, called this afternoon to talk about Tyler's medications and she was able to give me the results of his lumbar puncture from Wednesday. It turns out that Tyler's spinal fluid is still clear of leukemia! Great news for the January transplant date. We hope to keep on this track as we coast towards his scheduled appointments in January.

Prayers Answered

Tyler just let me know the results of the tests from yesterday and I know many others have been waiting to hear this with us.

0 signs of leukemia in his bone marrow

0 signs of leukemia in his spinal fluid

Hallelujah! It appears the Induction Therapy worked wonders and Tyler is beginning to recover from the side effects. Saturday is supposed to be our target for improvement, so we're hoping that he might be able to start eating sometime over the weekend. I've got lots to be thankful for this year!

Mandy

Testing our Patience

Today is the big day for Tyler's Day 14 tests. He had a bone marrow test scheduled this morning at 11am and a lumbar puncture scheduled at 1pm. The marrow test started as scheduled and they got a great bone chip from Tyler's pelvic bone for the biopsy portion. Unfortunately, when they got to the bone marrow aspiration (where the liquid marrow is drawn), they just couldn't get any to flow. They tell us this is not entirely unusual for post-chemo patients, but I was disappointed that they couldn't get that portion of the test complete. They tell us they will get enough information from the samples they got to determine if the cytarabine worked or not. The next bone marrow will be on Day 28.

The lumbar puncture has been delayed to try to finagle Tyler's platelet count up. The test requires a platelet level of 50 and Tyler has been hovering around 5-15 for awhile now. Added to that, they are not seeing much of an increase with each bag of platelets that he receives. They decided to test him to see if he has developed antibodies to blood products.

Anyways... They gave him a bag of platelets yesterday and 3 units today. After the 2nd bag, his platelet count was up to 33. After the 3rd bag, his platelet count was still at 33, so we're expecting the radiology folks to balk at doing the procedure today. He's got his 4th (and final) unit of the day hanging now so that the platelets can be running while they go into the procedure, but that is our last shot for today.

Hooray! They just announced that they will take him, despite the low platelet count. Hopefully they can get his spinal fluid to flow today. It seems to be a problem for them to get a good sample.

Thanksgiving Blessings

My family has set a tradition of celebrating Thanksgiving together the Saturday before the real holiday. It's nice not to worry about conflicts with the other side of our family and to have a reason to get together with my family. This year was a little bit different than previous years because one cousin gave birth to a young boy a few weeks ago, another cousin gave birth to a little girl on Wednesday (see me holding Audrie at left), my Grandmother had surgery on Thursday, and my husband is in the hospital recovering from chemotherapy. Nevertheless, several of us gathered and discovered that one of the things we are most thankful for is to be a part of the same family. As many of you will likely be spending time with family this holiday, I hope that you find as much joy in spending time with your family as I find spending time with mine.

Tyler continues to fight throat pain, but we are hoping that this week wil begin the slow climb up. Tyler essentially has no blood making ability right now. He's got no white blood cells, almost no platelets or red blood cells. He's been getting transfusions each day to get his platelets and red blood cell levels up to a minimal level. The doctor says that a typical patient might start getting better on about Day 17 after the start of this induction therapy. We are currently at Day 11, so I am hoping to see some improvement over this next week.

He is scheduled for both a bone marrow aspiration and lumbar puncture on Tuesday. If those tests show that the first round of cytarabine had a good result, than they will likely continue with one more round of this induction therapy before proceeding to transplant in January. While I do not wish another round of this chemo and mucositis on Tyler, I do hope that we have finally found the right treatment path to get Tyler healthy again.

Tyler and I thank all of the many hands that have helped us keep our lives going, the many friends who send e-mails and comments to encourage and comfort us, and we wish you the best of holidays!

Mandy

Just Let Me Sleep...

Tyler had his final dose (for the time being) of Cytarabine this morning. Thankfully, side effects are still pretty minimal so far. His throat is starting to get a little bit sore, but we haven't hit major pain yet. Probably the most difficult part of this weekend was just getting enough sleep. Tyler's having trouble finding a comfortable position in the hospital bed. I'll be bringing some of the pillows from home back with me, since he has broken all of those in appropriately by now.

What is most frustrating for me is that he just drifts off to sleep and someone will come in and need something from him, or the IV will start beeping an alarm at us. I wish we could just let him sleep for an hour or two, once he finally dozes off, especially after he had 2 bad nights in a row. Usually the afternoons are quieter than the mornings, so he is trying to get a brief nap in now.

Phew! His cell phone just rang, so I was diving across the room to hit the silence key. I got lucky and got to it after only 2 rings. It turns out that the UWMC was calling us to make an appointment for a test. I suggested that they contact Tyler's nursing staff since he is still inpatient. That seems easiest for now.

Now the IV has started beeping. I think it just isn't our day to find quiet time.

Anyways... Dr O'Meara had good news for us this morning. Although today's blood test results weren't yet in, yesterday's results showed that the blast count in Tyler's blood were down to less than 1%. That's great news and shows that the first 4 doses of chemo have done their job. We hope that last night's results show him down to 0% in the blood. They will test his marrow and spinal fluid next week, for the more sensitive tests. Hopefully they will also show the same kind of improvement as the blood tests.

The side effects are expected to worsen (if they are going to) over the next week, so I suspect that will be the worst part of the month for Tyler. I pray that they will be far easier than what he dealt with for the radiation.

My "son" is staying with Tyler tonight, so I'm headed home to try to catch up on sleep myself.

A Day of Tests

After several weeks of agonizing each time he swallows his pills, Tyler has finally been scheduled for a GI Consult this afternoon. They will put a scope down his throat and look for ulcers or infections along his esophagus. This gives us such peace of mind, as the pill swallowing has lingered as the most painful thing left over from radiation. The doctors really feel that Ty's throat should have improved by now.

He's also scheduled for a lumbar puncture with chemo injection this morning, so we'll start that part of the treatment at least. Yesterday's appointment with the doctors sounded like they wanted to wait until Tyler's throat has cleared up a little bit before starting with the rest of his chemo therapy, but we should get a better idea of that today.

His left foot has started tingling itself awake again, so we are excited that the numbness seems to be receding and that he is able to move his big toe a little bit again. Tyler is so good about doing his exercises that he is bound to see continued improvement as the nerves heal themselves.

Tyler got 2 bags of platelets in the wee hours of the morning and is getting one more bag before his LP today. Then, after lunch, we'll see the GI doctors and get 2 units of Red Blood Cells. It will be a busy day for us with all of the appointments to juggle, but I'm just so relieved they've squeezed him in for the throat scope.

You Can Call Him Rocky

We finally got the results back from yesterday's LP and the news was not good. They tell us that his spinal fluid had 4% blasts. They'll be discussing options tomorrow and will fill us in tomorrow. Tyler will also have to get a bone marrow aspiration tomorrow. One of the concerns the doctors have is that Tyler's disease is evolving, so they want to look in his bone marrow to see how it compares to previous marrow extractions.

Rocky is on TV today and we just watched the scene where Rocky runs to the top of the Museum steps. The music is so hopeful and it makes me think of the fight that Tyler seems have against this disease. We can't figure out WHAT is going on with it!

Bad news again today, but hopefully the plan they come up with tomorrow will be the one that works. For now, we suspect the transplant is on hold.

Can They Make the Pill any Bigger??

The doctors have informed us that Tyler's WBC is climbing (from 20 to 35 since yesterday), so he really needs to be taking his Tasigna regularly again. Unfortunately, the Tasigna pills are large and Tyler has to take 4 pills per day. They've also added 12 Hydrea (to quickly bring his WBC down to a normal range of 4-11), and a few others. It's very, very painful still for Tyler to swallow the pills. He's doing okay with the small ones or the ones that can be crushed up and sprinkled on a spoonful of something easy to eat, but the Tasigna is refusing to cooperate.

We hope that his throat continues to cooperate and make swallowing an easier task, but in the meantime we are wishing for more IV forms of the various medicines he needs to take.

The new LP is scheduled for tomorrow, so we are also praying that his spinal fluid will FINALLY be free and clear of Leukemia. In the meantime, you will find us at the UW hospital. E-mails remain the best way to contact us, as we can check them any time of the day. We get so many interruptions day and night, that it is difficult to get enough rest in a 24 hour period. E-mails allow us to hear from loved one when we are feeling good and respond to you at that time. Thanks so much for all of the encouragement!

0 for 8

Sorry for not posting yesterday, but it was a really busy day. Tyler woke up feeling significantly improved. His energy was up again, he barely used the morphine at all (1 pump all morning), and his voice was back. He was so relieved that the Ear, Nose, and Throat guys had taken a look at his airway and confirmed that he had a good clear breathing passage, although they saw lots of inflammation and lots of mucous clogging things up for his swallowing. The steroids they prescribed reduced the swelling in his throat and Tyler was finally anticipating swallowing real food again.

Since he awoke feeling so good, we allowed a few visitors to come in and say hi. He has to be careful still to not talk to much and to keep his mouth and throat moist, but all in all, it was a great day.

He was finally feeling good enough to get up and walk around the hallways, which is an important part of being inpatient. I even saw him practicing "the move" as he walked around the halls. I guess he doesn't want to lose his biggest weapon on the soccer field.

One of our goals for yesterday was to attempt swallowing again. The doctors tell us that thin liquids are actually harder to swallow than thick liquids, so they got us a jello cup to start with. Tyler was able to swallow the jello (8 times), but wasn't able to get the jello all of the way down. It ended up getting lodged in his throat halfway down and then coughed back up. It hurt quite a bit, so we called it good for day 1 of swallowing and plan to try again Friday.

When we met with the doctors, they told us that Tyler's transplant has been pushed back about a week with the delay in the repeated lumbar puncture. We estimate his new transplant date is 12/2. We expect to be at the hospital through Monday's LP, unless Tyler is swallowing nutrition and medicines again. He's been off his Tasigna for a few days, so we need to get him back to that medicine again soon.

Thank you all so much for encouragement while we were struggling earlier in the week. It helps us so much to have e-mails and comments from loved ones.

New Plan

The plan that they have created (since the transplant can not yet proceed) is to have a Brain MRI for Tyler and then another Lumbar Puncture on Monday. The LP is to measure whether or not the cells they saw this week were just the last onery cells dying off. The brain MRI is to investigate WHY none of the treatments have worked yet. Tyler has had several rounds of chemo to his spinal fluid and a heavy dose of radiation that all should have killed off every speck of leukemia. The doctor says they will be looking for a "leukemia lump" in his brain somewhere. I didn't know that leukemia could form a solid tumor, but that sounds like what they are looking for.

All of this makes me wish that we had caught Tyler's leukemia much earlier and maybe had more success as fighting the dang disease!

In the meantime, the doctor expects that we will have several boring days at UW just waiting for tests and for healing. Dr Turtle did mention that Tyler's White Blood Cell count had gone up this morning, so the doctor thinks that Ty's body will start to recover now. It would be a blessing to have his throat return to normal. I bought Tyler a 36-pack of Mountain Dew for his birthday and it would be a crime for me to drink it all without him.

He is swallowing NOTHING these days, so he is unable to take his Tasigna. The doctor thinks that will be okay, but I get worried when they talk about his WBC climbing up and I know Tyler is not on his leukemia meds. It does give me peace of mind to know they are watching him so closely while he is in the hospital. If we had experienced the not-breathing episode last night, I would have been beside myself trying to figure out what to do. It took me long enough to find the nurse's call button as it was....

I'm back to spend the night with Tyler again. It's an interesting way to try to get rest. They wake us up every 4 hours to take vitals. I know that is important, but I weigh that against the importance of sleep. Maybe I should take ear plugs tonight??

So Close, yet So Far Away

The doctor came in this morning and let us know that the LP results were in. Sadly, they still had signs of leukemia in Tyler's CSF. It was only 0.1% (compared to 16.5% before radiation), but it doesn't meet our goal of completely clear.

The doctors are meeting today to determine what steps we take next. At this point, I would assume the transplant is on hold. He is probably going to end up going through another round of radiation and we were really hoping to avoid that.

We are both very discouraged at the news, but will surely start feeling a little better once we have a new plan in place.

Morphine Makes a Difference

At 10:30 on Monday night, Tyler decided he wanted to be admitted to the hospital. The doctor had given us the option earlier in the day, but Tyler thought he might be able to tolerate the pain at home and opted to stay outpatient. Unfortunately, with his inability to take pain medication, he was unable to get any relief. On a scale of 1 to 10, he rated his pain level as a 10.

We finally got checked in and he got a shot of morphine at 2am, but it was a little bit of pain relief and very late in the game. They gave him another shot a few hours later and then, this morning, hooked him up to a PCA of morphine. A PCA is a patient controlled analgesic. Essentially, Tyler now has a button he can press to dispense another dose of morphine. After consistent use for a few hours, he estimated his pain level had finally dropped to 5-6 out of 10. The nurses have explained to us that getting early relief from pain is key to managing chronic pain like this.

We expect Tyler to be in the hospital for a few more days, so please feel free to e-mail him or comment on the blog (he gets copies of all comments made here) if you want to share with him or encourage him. He should have internet access by tonight, so he will be able to get online anytime he is feeling good. The nurses and doctors at UW have definitely explained to him that the symptoms he is experiencing from mucositis and esophagitis are not abnormal for the treatments he has gone through.

Still no update on the lumbar puncture yesterday, but we'll definitely let you all know when we know more. We know a great many people join us in hoping that the results are clear and free and we can proceed with Tyler's transplant.