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

Shopping Tips -- Avoid Crowds by Shopping Online

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

The Bledsoe Battle fund earns a percentage of your purchases for all purchases made through this link. Our thanks for your support!

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.