MRI Results

Today marks the last day of our first month in the hospital.  We were prepared to stay this long, but hoped that it would prove true.  There is still no sign of white blood cells (WBC), which is one of the things keeping us here.  I checked the blog history and found that Tyler's first brush with induction therapy had us waiting 2.5 weeks from the end of chemo for the WBC to return.  We are just a little bit over 3.5 weeks now, although it seems much longer.  Since the body is much more sensitive to treatments after a bone marrow transplant, this is not totally unexpected.

Tyler had another MRI on Tuesday, so I have been anxiously awaiting the results so that I had something to post about.  The doctors said that his marrow looks like it has more fat in it now (I didn't know you had fat in your marrow), but the chloromas are still there.  We were hoping that they had reduced in size after the potent treatment Tyler had last month.

On the upside, he has had a series of relatively good days recently.  He had been flirting with beverages for the last few days (juice, jello, smoothies, milkshakes), but today he branched out into the territory of Cream of Wheat and ENJOYED IT!  He says eating or drinking cold things causes his throat to sting, but the cream of wheat slid right down without any pain.  I'm delighted that he had a good breakfast!

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!

Academy Award Speech

My absolutely AMAZING husband had juice today! 

I know that doesn't seem like it should be such a big deal, but when you stop swallowing altogether because your entire digestive system has been ravaged by chemo, drinking anything is a victory.  When I cheered for him, he gave me an Academy Award speech where he thanked me, his family, the people who made the apple juice, etc.  One of the things I love the most about my husband is his sense of humor.  He never fails to put a smile on my face, even when he is suffering so much himself.

So he had not one, not two, but THREE juices today AND he swallowed pills for the first time in days.  I think this is a sign that his mouth and throat may be on the mend again.

If only we could figure out the cause of his side pain, we would be headed in the right direction.  But, sadly, he is still limited in mobility.  Any motion other than laying on his back can cause his back/side to spasm and even the morphine doesn't really touch sudden sharp pain like that.

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.

Still Waiting...

They still haven't been able to remove Tyler's neck catheter.  They could only get his platelets up to 31 yesterday, so the surgeons wouldn't do it.  They tried to schedule the surgery for today, but I guess that the surgeons couldn't find the room in their schedule.  Hopefully tomorrow will be the day....

Tyler continues to get better at moving around again, so that is great news.

He has finished his chemo treatments, so now we are just cruising towards the bottom of the trough and hoping to improve again afterwards.  The worst day is supposed to be somewhere about 10-14 days after the first chemo treatment, so we have a few days to go until then.  He is experiencing increased pain in his mouth and throat, which makes it difficult for him to eat right now, but he is a trooper!

He has Magic Mouthwash, which is a mixture of lidocaine and benadryl, to slightly numb up his mouth throughout the day.  The cells lining your digestive tract are short lived cells, because we have to be able to eat things after burning our tongues or such.  Because of this those cells are particularly responsive to chemotherapy and can lead to sores and ulcers, mostly in the mouth.  With the radiation that Tyler received before his transplant, he got really bad mucositis in his esophagus.  This time the sores are located in his mouth, more than his throat.

We are both hoping that the sores don't get so bad that Tyler has to stop eating, but the doctors are prepared for that just in case.

Looking for more platelets

The doctors have given the authorization to remove Tyler's neck catheter, which will really improve his comfort and mobility. The surgeons are requiring that Tyler have a platelet level of at least 50, which is probably a good idea with all of the bleeding he did at the installation!

They couldn't get him quite high enough yesterday, so will be giving him a couple more bags of platelets today to try to hit that magic number. As a side note, I want to encourage you to donate blood. The platelets (and red blood cells) that Tyler will be receiving come from donations in the community and are essential for keeping his body functioning through the chemo process.

Another good note about yesterday is that Tyler is finally out of isolation! I spend the majority of my day in the room with Tyler and hated sitting around in a gown, mask, and disposable gloves anytime I was in the room, so I am celebrating this more than anyone!

We think today is the last treatment of chemo, although he will continue to trend downwards in blood counts for at least another week, before turning the corner and heading back towards normal counts.

He is feeling a little bit stronger and has his 2nd physical therapy appointment today.  His goal is to increase his strength enough to be able to walk around the room unaided, which he isn't really able to do right now.  After that, we will be able to progress to walking in the halls and building up his strength again.

A Peaceful Day

After all of the ups and downs of the past few days, we were very thankful that today was a fairly quiet day. We met with our doctor this morning and learned that she is very pleased with the progress that Tyler is making. She tantalized us with promises that he might be able to get the neck catheter removed tomorrow (if Tyler's kidneys can keep up with their workload).

In the early afternoon, we watched our (my!) favorite MLS team take on the Kansas City Wizards. I'll refrain from posting the result, just in case you didn't see the game. But... I will say that the Sounders played pretty well today. Tyler and our afternoon nurse were laughing at how "involved" I was with the game. I definitely lean toward the "fanatic" side of fan!

Andrea decided that Tyler had us all under control and decided to head home for a day or two. She has been a rock over the last few stressful days!

Last night, Gump stopped in to say "hi" and bring us anything we'd forgotten at home. When he came by, Tyler was sleeping so it was pretty low key. :) Eventually, Tyler woke up and the guys watched the baseball game together.

This afternoon, we had a fabulous visit from Kate and Scott. I meant to take a picture of the three of us dressed up in gowns and masks and gloves (because Tyler is still in isolation), but forgot to do it before they left.

All in all, we had a very enjoyable day. A couple of nurses from earlier in the week checked in on Tyler and were pleased to see him looking so well. He's starting to regain some strength and be able to move around a little bit. It's strange how just a few days of laying in bed can take away so much of your strength.

Tyler says that he loves you all very much. He can feel all of the prayers and best wishes surrounding him. He had the time to read the recent e-mails and blog comments today and was very moved by how many people had taken the time to send encouraging notes.

We are on Day 3 of our 5 day chemo cycle and he is handling it well. We thank you for everything you did to help us get back on track.

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). :)

The Final Countdown

Tyler has agreed to check into the hospital on Thursday of this week to begin his Induction Therapy. We anticipate that he will be in the hospital for about a month, so we are trying to clean out our DVR before he goes. ;) It's amazing how addicted we've gotten to our set of shows.

He's feeling generally crappy right now and still has that lingering cough. It's hard to see his spirits so low and his appetite down, but we hope that the Induction Therapy will knock the CML out of his body again. the real question is what to do afterwards.... The doctors are advising another round of DLI, which would mean giving Tyler more of his Dad's white blood cells to stimulate an immune response. We are also still hoping to get Tyler qualified for a clinical trial to find a drug that might keep things under control. Tyler is also entertaining the idea of a second transplant.

Thanks for your encouragement! We are so very thankful to have you in our lives and keeping us on this path towards (hopefully) a cure for Tyler's CML.

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.

Day 12 - Heading Home

After the slight delay, Tyler and I are heading home this afternoon. While we were getting some new blood and waiting to go, Tyler's aunt and uncle stopped by to visit. It was fun to hear how their family is doing.

Tyler will have daily clinic visits for a while, but we hope that his new marrow will take over the job of making new (healthy!!) blood for Tyler in the next week or two. If memory serves us correctly, Day 22 was the magic day for new white blood cells after his Induction Therapy in November.

Where Should You Start if you are Diagnosed with Leukemia?

These are our thoughts of things to think about when diagnosed with leukemia, although many of these would apply to any serious illness:

1. Visit the Newly Diagnosed section of the Leukemia and Lymphoma Society website: http://www.leukemia-lymphoma.org/all_page?item_id=4221 They have checklists and information aimed at helping people in your shoes.

2. Find an oncologist who really listens to you and explains things to you in English. Then make sure you like his nurse, because you spend a lot of time with the oncology nurses!

3. Likely treatment that you would go on for leukemia are Hydrea (Hydroxurea) and Gleevec (for CML) or Induction Therapy (Cytarabine or Ara-C) (for AML or ALL). Tyler's been through both, so we can answer any questions you have about our experiences on those medications.

4. Take your medications carefully. Our doctors say that about 50% of people don't take the medication as prescribed, but it can make a big difference in the state of your disease.

5. Avoid any sports with a risk for contact until the doctor tells you your spleen is normal

6. Stay healthy otherwise - diet, exercise, adequate sleep.

7. Have someone other than each other that you can talk to. Sometimes it is easier to share your fears and frustrations with someone other than your partner.

8. Let family and friends support you. It takes a bunch of weight of your shoulders AND theirs! In fact, it sometimes is good to have a mental list of the things that others can do because many will ask and want to help in any way they can.

9. Remember that some people out there might be uncomfortable hearing about your illness. It's nothing personal; it's just that they have their own issues.

10. We recommend a blog as a central way to communicate to those who want to know what is going on. Ours has been an incredible blessing to us and our loved ones both. If you don't want a blog, you might look itno CaringBridge sites.

11. Go together to all of the doctor appointments. Two pairs of ears hear better than one pair.

12. Apply for FMLA at both jobs, so that you can go to doctor's appointments without risking your job in any way.

13. Resolve any non-mortgage debt you have as quickly as you can, so that you don't have any extra financial worries as you fight your illness.

14. Take the drugs if getting a bone marrow aspiration or biopsy. Tyler had 2 bone marrow aspirations before he started getting conscious sedation and he still remembers how much they can hurt.

15. Have hope that your treatment will work. Oftentimes our minds can will our bodies to work or not, based on our mood.

16. Cry over the disappointments for a day and then get up and fight again.

17. Live every moment and celebrate every day together!


We know that many others have faced similar challenges and welcome you to add your own comments about your first steps for dealing with a diagnosis like this.

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.

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

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.

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