Quick Improvements

We were pleased to hear, after Tyler's Saturday blood draw, that his blasts are already down to 50% less than what they were on Friday.  We think this is probably due to changing his medicine from Interferon to Tasigna on Thursday night.

Let's hope this is a sign of things to come!!!

Thank You Novartis!

At his last doctor's visit, Tyler learned about a great program sponsored by Novartis, the manufacturer of both Gleevec and Tasigna. Apparently the company will actually cover some of the copay's for the next few months. While the copay is only $35 per month (thank goodness for medical insurance!!), we are still happy to have someone else pick up the bill for a few months.

Many of our readers may know someone else touched by blood cancers. If your friends/family are taking Gleevec or Tasigna, you might have them look into this copay assistance program too.

Day 26 - A Day of Rest

Tyler and I had a pretty low key weekend, which was much needed after the craziness of the last week. Tyler's aunt, Libby, came up for a few hours on Saturday to get a putting lesson from Tyler. It sounds like she picked up a few tips, so I think they are both hoping to get out golfing again soon.

My parents also stopped by (and brought homemade Won Ton soup from my sister) to say "hi" on Saturday evening. My mom's family is planning a week long getaway in August, so we had some fun talking about the golf that the guys planned while in Chelan. I think my father is secretly delighted that Tyler loves to play so much golf. I'm hoping that they can both get over to the golfing place that Tyler found on 128th soon.

I have another busy week at work, so I'll be gone from Tyler for much of the time. But the good news is that my software conversion is going REALLY well and I haven't forgotten everything I'd learned about the software. ;)

As for the week ahead, Tyler has an important bone marrow aspiration and biopsy coming up this week. This test (scheduled for Wednesday) will help measure the success of the transplant. Tyler asked the doctors about when he can say that he is "in remission" and they told him that his bone marrow test would be an important part of that. The goal is for them to see absolutely NO signs of leukemia in his marrow. We likely won't know the results right away, but will be anxiously awaiting the news anyways.

They actually had Tyler start back on his Tasigna last week to make sure that any remaining leukemia in his body will be controlled until the new immune system is fully functional (for about the first year). After that year passes, I'm hopeful that Tyler might get to move off the Tasigna again and have a more normal (translation: less pill intensive) life!

Other than that, Tyler also has his regular blood draws Monday and Thursday and clinic visits on Thursday. Scott (Tyler's dad) is coming to take Tyler to his Monday appointments, so those two will probably go crazy talking sports all day long.

Hello out there

Its day 6 in the hospital here, and the staff have been wonderful. They are doing their absolute best to get me through this horrible time. Ive experienced things this week that I wish to never repeat, although it seems likely I will. Pains have been awful, inability to do things has been disconcerting beyond all I imagined, but more than anything the overall discomfort, and doubt have really made this week miserable. I feel like Im getting better, but there are still things Im not doing well.....mainly swallowing pills. This has most likely contributed greatly into a climbing WBC count.

I have been receiving numerous emails, comments on the blog, texts, and phone calls.......and I appreciate every single one of them! I do apologize if I havnt responded or dont respond, but getting through each day is about all I can handle right now. Right now, I am trying to enjoy some soup, and apple juice and it seems to be going well. I think I will get back to that now, but just wanted everyone to know that I love you all very much!

Tyler

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!

Can I Get Off the Roller Coaster?

It seems like we have good ups and then some bad downs with this disease. Today, Tyler tried vanilla pudding for breakfast and ate the whole thing without any problems. He says it tasted delicious on his tongue, so it was a good place to start. We were both thrilled with his progress and trying to figure out what he should try to eat next.

Then we met with our doctors here and they raised some concerns about a numbness that Tyler has been feeling in his foot since Wednesday. The numbness itself wasn't entirely concerning, but the fact that Tyler has lost ability to pull his toes up on the left side is concerning. Tyler is a strong man, with good muscle tone, so he should be able to exert some pressure against a hand that is pushing his foot down (imagine pulling your foot up in the opposite direction you would use on your gas pedal -- heel on the floor, pulling your toes up). Unfortunately, that wasn't happening today.

The doctors said that they don't know what has caused this, so they want a neurologist to take a look and help determine the root cause of this problem. They say the numbness/nerve damage could be caused by the radiation, or it could be caused by the leukemia itself. They will take what they learn from the neurologist and from the Brain MRI (we hope both are happening today) and try to figure out why Tyler's disease is such a challenge.

We are discouraged because the doctor said that it is possible that Tyler's CML is so resistant to all of the nasty things they have thrown at it, that we might not be able to get Tyler eligible for ANY transplant. I have come to believe that this is Tyler's best hope, so it is heart wrenching to hear we might not be able to travel this path.

In addition, the doctor says that Ty really needs to start taking his Tasigna again, as they are already seeing blasts (leukemia cells) in his blood tests.

In the meantime, I try to remain hopeful that we will find a cure that works for Tyler and that his spirits don't drag too low in light of the news we got today. All in all, it isn't the birthday I was hoping he would have today.

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??

My Heart is Breaking

I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.

Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.

We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.

We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.

Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.

Victory Dance

It may be a little thing, but it still had us doing a victory dance this morning...

Tyler's blood test today:

WBC: 2.45
HCT: 28
PLT: 51

His hematocrit climbed from 26% to 28% and his platelets climbed from 34 to 51 over the weekend. Tyler's counts have not improved like that in two months, so we are thrilled to see a hint that the Tasigna is working! We are getting another blood test tomorrow to make sure this test wasn't an aberration, but we were sure happy to see that Tyler is making his own blood again!

Tests are down to a minimum this week, with only Tuesday and Wednesday afternoon appointments scheduled. With luck, our schedule will stay light for the next couple of weeks until Tyler's therapeutic dose.

Happy Labor Day to all!

Settling In

Our week down at SCCA was much easier this week with regards to appointments, blood draws, etc.....I did have to get a red blood cell transfusion on tuesday night, and may need a few more between now and the transplant. For some reason my red blood cells have been not living as long as they should in my system. We took a few classes to get us more familiar with what we can expect during and after the transplant.

During the first week of my CML diagnosis in Feb. 07 I had an overwhelming sense of security come over me about a day and a half after my diagnosis. I just went from feeling sorry for myself, and angry, and miserable, and upset to ..........these people are now taking care of me, and I am going to get better! I had the same feeling come over me this week as we walked into the building. None of what I or my caregivers are going through is much fun at all, but we are preparing for a huge battle. I have reached a point where despite what Im going through........I know that my strength and the strength of my supporters will get me through this battle.

It will be an extremely difficult period of time to get through with all the medications and chemotherapy treatments I will be taking, but the purpose is to eliminate the Leukemia with the idea that it will not come back. The transplant process and the treatment regimen is somewhat complicated and I wont go into details at this point, but I promise to do my best to relay how I am feeling and what is happening during the process.

I cant even start to explain how important all of the support has been for me, but it has been extremely important! I am overwhelmed actually with how much support we have received, and will never forget it! I look forward to seeing everyone at the auction, and perhaps some of you sooner or after.

My new medicine I have been taking for about 5 weeks now has put me back into pretty good shape overall, but as has happened before the medicines have only worked temporarily. Even my nurse at SCCA is a little surprised at how well I am looking at this point. The better condition I am in at transplant day, the better the proposition for success during and after transplant. So that is the goal, and we are working very hard to be in excellent condition the first week of October.

Tyler

uncertainty

Today we received the news that it is very unlikely that my brother will be a match. They have done preliminary typing, and it appears he wont be able to be my donor. They now wish to have my parents typed to prepare for a potential transplant with them if my situation becomes dire. Parents are usually a guaranteed half match, unless over time cells have altered or certain anomalies occur. This doesnt seem to me to be my best option, but may become my only option if we need to rush to transplant.

I am hoping that the Tasigna will improve my current health to the point where that option can stay on the back burner. We will most likely have them begin the unrelated donor search now so that remains an option also.

My blood results today for those following:

WBC 13.8
RBC 28.8
Platelets 24 (they transfuse at less than 20)

I will need to go in tomorrow for another blood draw to see if my platelets drop below 20

The doctor also has me scheduled for a bone marrow aspiration on friday to see where I am at with the recent acceleration of Leukemic cells.

The good news is that I feel good, energized, and ready to take on whatever comes my way. This really sucks, but I have to face it and so I will! I will most likely update on friday when we have gathered more information about the next steps.

Tyler

Tyler Gets the Day Off!

For the first day in a long while, Tyler gets a day off from the doctor's office tomorrow! His blood draw today showed improvement in his counts, so we have great hopes that the Tasigna is doing its job.

WBC: 11.8 (Hooray!! It's almost in normal ranges of 4.8-10.8)
HCT: 30.6 (Those donated blood cells that Tyler received Friday are doing their job)
PLT: 33 (Although the normal range is 150-400, we're happy about this because it means no platelet transfusion needed, since he was as 33 on Friday too)

I'm scheduled to head to the Stampin' Up! convention in Salt Lake City this weekend, so will miss the rest of the week with Tyler. My trip has been planned since April, and I was worried that I would have to cancel if he didn't get better. It's such a relief, though, to have Tyler feeling more like himself. Since his last visit to Sequim was cut short, Ty is planning to head over to his mom's house and spend a few more days with her while I am gone.

Now that he is feeling better, we are hoping to see some of the friends we haven't had a chance to see recently.

We also want to wish a very happy birthday to Ariel (Tyler's niece), who allowed us to entertain her last night at her 4 year old birthday party!

some good news.......maybe?

Today was hopefully a beginning to a run of better news for Mandy and I. We dont have anything in writing yet, but I talked to a case manager with Premera this morning and it appears that they will have to cover part of the transplant. Because Seattle Cancer Care Alliance/Fred Hutch/UW are the only provider for allogenic stem cell transplants, they have to provide coverage since it is a unique qualifying event.

Now, that made us smile quite a bit today but I also know not to get overly excited until we get this in writing and the HLA blood typing for Gump and I is underway. My doctor has also recommended that we switch medications to get me into a better position for transplant. We hope to get this process underway immediately, and if Gump is a match.....I may be ready for transplant around end of September or early October.

I am still sick as my immune system is fighting, but it is fighting several things. It is fighting the recurring Leukemia, my respiratory issues, fever, and who knows what else? Basically, I have been sick for about 2 weeks straight now, and I am sick of being sick! I tried to get out of the house, and spend time with mom in Sequim. I was able to get away for a day and a half, play some cards and even got in some golf! I was able to finish 18 holes with a cart, but my calves, knees and forearms have been extremely sore since then! Hopefully my new medicine will get my immune system back into shape in the next week or two.

We will let you know more as we go.

Tyler