Waiting Game

No new updates to Tyler's health. We are just waiting for his throat to repair so that he can get back to eating and drinking. His white blood count was still at 0 this morning, so he doesn't have enough neutrophils to repair the damage done during chemo and radiation. Our next scheduled "appointment" is on Wednesday December 10th (or so) when Tyler will get another bone marrow aspiration and another lumbar puncture.

In the meantime, Tyler is trying to limit his speaking (we're learning sign language) and keeping his mouth and throat moist. We'll post more when we know more.

Taking Care of Business

I just finished reading The Choice by Nicholas Sparks and have finally stopped crying over an incredibly moving story. One of the reasons that I was so moved by the story is that it discusses the importance of a Living Will. Tyler and I have been talking about all of the paperwork we need to finalize before we get to the really tough parts of his treatment, but it wasn't something I would have thought about before he got sick. I assume many of you are the same way.

While it is incredibly difficult to face the thought of injury or death, it is essential that you talk to your loved ones about your preferences. In the state of Washington, you can even register your preferences online at http://www.doh.wa.gov/livingwill/. If you haven't already done so, I urge you to complete your own Living Will. Talk to your family about what your preferences are and why you feel that way. Make sure you consider how you would really feel if the situation arose that you needed to address your living will. Some of us might actually have to follow these guidelines...

Home Away From Home

Many people have asked me if I am staying with Tyler while he is in the hospital, so I thought I would take a quick second to show you my home away from home. Tyler's room (a private room) comes equipped with a chair that actually converts into a bed for any overnight guests. Each night, I convert my chair (pictured on the left) into a bed (pictured on the right). I have access to sheets and pillows from their linen service, but I actually cover the bed with two blankets that we were given so that I don't freeze to death at night. The chair/bed seems to be located at the end of an arctic wind tunnel. Tyler's bed doesn't seem to receive any of the room's air conditioning, so we have it on at full blast much of the time. I've often thought we should switch places to get the right temperature for each.

They also have a "family room" where we can prepare meals, watch TV, recharge, relax, bathe, etc. It's easy to see that they have considered long term patients and long term caregivers' needs. I go home occasionally to pick up clean clothes or more food or just get an uninterrupted night of sleep, but most nights I am with Tyler. We have fallen into a comfortable rhythm of wake time and sleep time in the hospital, although we seem to act more like farmers here (going to sleep as soon as darkness falls). Vitals are checked every 4 hours, so we get brief interruptions at 8pm, midnight, and 4am. Thankfully the nights have been quieter since we added the request to group the nighttime processes together.

Tyler's family has been wonderful about offering to stay the night with Tyler, so that I can get out for a short time. Sadly, I'm quite possessive of his time and unwilling to share him very often. Hopefully they don't take it personally that I seem to hog all of Tyler's time! :)

That's just a little peek into the caregiver side of our stay at UWMC.

Happy Thanksgiving to all! We wish you an abundance of turkey, mashed potatoes, football, family and friends to celebrate the holidays!!

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

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Spend the day after Thanksgiving at home (hopefully sleeping in) by shopping online at Amazon's Black Friday sales.

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Thought for the Day

My father-in-law shared the following thought with us and it moved me enough to share it with you as well:

God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.

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

Sleeping Beauty

Tyler has started to feel the effects of the chemotherapy. His throat is sore and swallowing is painful again. He is disappointed because he had such a good day yesterday and was excited about eating again. Today, the pain was up considerably so we requested a PCA again. This will allow Tyler to administer his own medication, and hopefully, be much more comfortable through this stretch.

He switched from Morphine to something called Hydromorphone, which is supposed to be a little stronger and make him a little drowsy. After 3 rough nights, "a little drowsy" meant that Tyler slept all day. I'm thankful that he reports his pain level has dropped from a 7 this morning to a 3 this evening. Plus, the doctor thought this bout of mucositis might not last as long as the one from radiation did. I hope that is the case, because Tyler and I could use a few days at home, and we can't go home until he can eat and drink.

The doctors told us this morning that they found no evidence of leukemia blasts in Tyler's blood, so that was definitely cause for celebration. Sadly, Tyler wasn't in the mood to party because of the pain and his morning test.

Because of the foot drop problem Tyler has experienced, the neurologists suggested a nerve conduction study to more accurately identify the cause of the problem. Tyler described the test as torture, so I think it isn't much fun to endure. I wasn't with Tyler during the test, but he reports they spent an hour shocking him (electrical stimulation) and then another 30 minutes poking him with needles. He wasn't feeling good at the beginning and this just made him morning worse. After the test, the doctors believe Tyler's foot drop is the result of pinching or damaging a nerve while sleeping. They told him today that it will likely take 6 months (extended from the original 2-3 months) to heal -- if it heals at all. I know they have to say that, but I hate hearing that things might not go well. Tyler will definitely miss some of his activities if the foot does not eventually heal, so I am hoping that it is just a temporary injury.

The night nurse is hanging Tyler's medicines now, so I guess I had better get ready for bed myself. If we go to bed about 9, we sometimes can get 6-8 hours of sleep. It's a crazy schedule around here, but it is definitely improving my ability to sleep through things.

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 Blessing of a Day

Although I doubt it will last, today was a good day. Tyler was experiencing no effects yet from his treatment, his throat was feeling a little better, and he said he was a little bit hungry. All in all, he seemed to be in pretty good spirits, so I am VERY thankful that he survived the first 2 doses so far.

He gets dose 3 tonight and dose 4 in the morning. We expect the majority of the complications to hit next Wednesday or so, with the mucositis being the one I most fear. But Tyler was feeling good today and Dr O'Meara thought it was possible that it might just be due to the fact that we are treating his leukemia and whipping it into shape.

Thank you so much for sending laughter and encouragement our way! Let's hope this next dose gets the job done without many new side effects.

Mandy

The Next Steps

After delaying to see if they could get his throat to heal up a little bit, the doctors have come to the conclusion that they need to start their "induction" today. Beginning sometime tonight, they will give Tyler a drug called Cytarabine that is much more like the drugs you think about when you hear the term "chemotherapy". Their goal is to poison any fast growing cells in his body in hopes of killing off these cancerous cells.

The drug will infuse over a period of 3 hours. 12 hours later, they will give a 2nd dose. Then they will let his body rest for 24 hours before giving 2 doses on Friday and 2 final doses on Sunday. The side effects are supposed to be nausea, vomiting, mucositis, rash, fevers, and low blood counts. 7-14 days after we start, his blood counts will likely drop down to zero and he will be getting frequent transfusions of blood from the generous souls who keep our blood bank stocked.

I'm nervous for him to begin this next phase of treatment and wish that I had a guarantee that it will be the best path for us to travel. It seems to me that he regrets all of the previous treatments, since we now know they didn't work. While we couldn't have predicted the outcome at the time we started down each path along our journey, it would sure be nice to have some assurances we could trust.

Finally, please pray that he can finally be in the 1% of the population that has a good result. We get tired of doctors telling us that they don't know exactly why his disease won't behave the way it should. It would be nice if they told us that they don't know why, but he seems to have no adverse reaction to this treatment. While I doubt that dream will come true, we still appreciate the love and support of the many people encouraging us through this journey. We know that everyone has "stuff" in their lives, which makes it all the more amazing that you can show so much love to another at a time when they so deparately need it.

Pray, also, that his parents and I all stay healthy and are able to support Tyler fully. It's coming in to the season of sick and I can "ill" afford to lose several days by my husband's side as I fight a silly cold.

Much love to you all and many thanks for the encouragement you send our way,

Mandy

Initial Results of the Throat Scope

The GI doctor says that he sees a sore at the base of Tyler's throat and recommended that Tyler swallow nothing other than liquids for 1 week. I don't know if they can find a way to keep his leukemia under control without the Tasigna or Hydrea pills he has been taking, but I sincerely hope they can find something that will work in IV form without adding too much toxicity to his body.

On a lighter note, I must admit that I enjoy seeing Tyler sedated. The GI doctor came out to talk to us and Tyler fell asleep and started snoring while the doctor was talking. Then he woke up and asked the doctor what happened (just after the doctor had finished his explanation to me). Then he asked me at least a half dozen times what the result was. He should wake up completely over the next hour and will start remembering things then. But I can tell him stories about his wild behavior in the meantime. ;)

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.

Sounds Like I Need More Sleep!

This morning the doctor who is covering our case for the weekend met me for the first time. After Tyler introduced me as his wife, the doctor said he was surprised to see how petite I was after meeting my son yesterday.

Ummm... My brother-in-law (who is a few years OLDER than me) stayed the night on Friday night and was apparently mistaken for my son. There is something to be said for aging well, right...? I'm sure the doctor regretted that once Tyler mentioned that Gump was actually his brother and not his son. OOPS!

Join the National Marrow Donor Registry for FREE!

Annie over at Living With CML posted the following information about joining the National Marrow Donor Program! If you missed signing up when we last posted how you can help save someone's life, please consider joining now. If you have already joined the registry, please consider sharing this message with the others in your life. It's free to join in November and would be such a minor thing for most of us...

November is National Marrow Awareness Month. Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

This is your chance to join for FREE while funding remains.

It's easy to join:
1. Confirm you meet basic donor guidelines.
2. Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
3. Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

NOTE: When filling out the application, it will ask you for a credit card number and it will still mention the $52 fee normally charged. Ignore the $52 fee and don't enter any credit card information. On the final page it will show a $52 fee and a $52 coupon making your total $0.

JOIN BY CLICKING HERE

For more info on what joining is all about, CLICK HERE!

Plan No 342

So the doctors from SCCA and UWMC had a conference about Tyler today and came up with a new plan of action. They want to put Tyler through Acute Leukemia Induction Therapy. This involves giving him very high doses of chemotherapy for 7 days, then recovering from that for about 3 weeks. The doctors anticipate 2 rounds of chemo, so we suspect Tyler will be in the hospital for the next two months as endures the chemo and recovers from its effects.

The timing and type of transplant are uncertain. They want to see how Ty responds to the chemo and, if they can get him into remission, they will want to move quickly with the transplant. Thankfully, they still think that Scott can be the donor for other types of transplant protocols too. Having a famiy member as a donor enables them to move forward with the transplant at any time.

Their goal is to start the chemo on Monday, so we are supposed to spend the time until then getting Tyler as strong as possible. Eating and pill taking are still challenges, but it is important that we keep working on those tasks to get his body's strength up. He didn't get his IV nutrition today, as our goal has been to get him eating again in preparation to go home. Then when he ordered breakfast, they told him he couldn't have anything by mouth from 9am until 2pm. This kind of interrupted his plans for a good healthy breakfast to start the day. But he got his sedation for the bone marrow aspiration and biopsy today, which was very important. I hadn't realized that he was getting a biopsy today and it isn't something he has gotten before.

While we are disappointed with the news that Tyler will have to undergo two months of bad chemo, I am thankful that we have a new plan and I pray that this is the one that works.

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.

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!