Improving

Tyler made it through the night with flying colors. His white blood cell count is down to 18 (from 104 yesterday morning) after taking hydrea and getting the pheresis last night. We haven't seen his blast count yet from the 6am labs, but I'm hoping that it might be down too.

They ran the pheresis machine from about 1-4 am, so we were pretty tuckered out after that. We'll likely try to sleep as much as we can today to make up for it. It's always tough to sleep in the hospital, with frequent interruptions for tests and observations, but they know we had a rough night so will hopefully do what they can to group things together today.

He's still bleeding from the insertion of the neck catheter, but it does look like it has slowed a little bit. Hopefully they feel safe in giving Tyler some platelets today to encourage it to clot.

His kidneys have held up so far, although I think they are more worried about how they will behave with the chemo killing everything off.

They started the chemo this morning. He's getting fludarabine, cytarabine, and a third drug we haven't seen before. I can't find the name of it right now...

He feels and looks much better this morning with a little bit more energy and alertness, so that is reassuring too. The doctor told me yesterday that Tyler is an amazingly tough guy. He always looks much better than he should when they get these shocking test results. I don't think he intentionally tries to hide anything, just that his body doesn't feel as sick as some people would in these situations. I suspect it is due to the all of the good clean living he's had -- working hard and playing soccer led to a strong, strong body. In fact, I always laugh when we read the notes from SCCA after we have a big visit with them. They describe Tyler as a "well formed adult male". I keep warning him about getting a big head from the fact that all of the doctors at SCCA think he's hot!

Thanks for the many prayers and the encouragement to get through yesterday's day of rough news and last night's treatments. I hope that we can continue to improve today and get out of the woods soon. We really don't want to move to the ICU unit if we can avoid it (although we have nothing against the 8th floor nurses if any of them are checking this). :)

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 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