Anybody know a Good Plummer?

Unfortunately, Tyler had a very bad night last night. I spoke with the night doctor twice and felt like she essentially blew me off both times. That is always fun.

Anyways, Tyler's regular doctor came in just before 8 to take a look at Tyler and said that he thinks Ty is having renal failure, possibly due to the sepsis and low blood pressure or the leukemia itself. That answer makes much more sense to me that the night doctor's answer of "sometimes people are just more disoriented in the hospital". Grrr!

They are taking an ultrasound to get more information, but the symptoms of kidney failure are similar to what I have been seeing in him overnight. Hopefully they can figure out what is going on exactly and find a solution this morning. I hate seeing him in pain.

What is that stuff growing in there?

For the first time in all of the times that we have been coming in to UWMC "for a fever", something actually grew out of the blood cultures from Tyler.  So... the bad news is that Tyler DOES have a bacterial infection in his blood.  The good news is that he has already shown a large improvement since yesterday with the broad spectrum antibiotics and they will be able to fine tune his medications even more now that they know what he is fighting.

They are making plans to move him out of the ICU, now that his blood pressure has stabilized somewhat and his fevers seem to have broken for the last time.  Thank goodness for that!

The doctors hint that we might be able to go home again after a few more days without a fever, so we are hoping for tomorrow or the next day on that.

Sick as a Dog

Tyler has just been admitted to the ICU wing at UW to treat sepsis. His goal is still to get home as soon as possible, but he decided that he wanted to get treatment for whatever was hitting him today.

They beefed up his fluids, given him some IV antibiotics, and put him on oxygen. He does seem to be a little bit better, although he is still at very high risk. His blast count doubled in the last 24 hours which is a very bad sign.

We'll keep you updated on what happens.

Mandy

Home again!

Just a quick note to share that Tyler and I finally go to come home from the hospital today!  He is still dealing with most of the same issues, but the doctors finally said that they weren't doing anything in the hospital that we couldn't do at home.  I am really looking forward to sleeping in my own bed tonight!

He will have follow up visits every other day at SCCA, so they will keep a close eye on him.  We also need to connect with our team down in Houston to see what to do.  Today is Tyler's last dose of ponatnib, so we really need to get back down there and get him another month of medicine.  Because the medicine must be closely controlled through the clinical trial, Tyler has to get down to Houston to get refills.  At this point, I think they might be the only ones that have the trial going right now.

Another infection

The doctors at UWMC say that Tyler's Adenovirus has also been found in his blood not just his nose and throat swabs. The infectious disease specialists haven't been overly concerned about that, but found another bug of some sort in his blood cultures today. They aren't sure what the new bug is, but have added more medicines to his cocktail in hopes of attacking it.

We did end up canceling the trip to Houston, at least for now... I'm not sure what happens next, other than we hope Tyler gets off oxygen and stops growing infections in the samples they take from him so that we can go home.

Breathe In, Breathe Out

There was a bit of a scare yesterday, as Tyler was dozing.  His breathing has been very labored with all of the congestion and when Andrea tried to rouse him from sleep, she couldn't get him to wake up.  After the excitement was over (many thanks to the excellent staff here), Tyler was on oxygen and a pretty high level.  As a result of all of the tubing and the mask and the fact that it is still hard for him to breathe, especially as his mouth and throat relax, he had another rough night.  Even with the oxygen mask on and pumping at a high level, his oxygen saturation levels fell to dangerous lows.

He is still on oxygen this evening and feeling cruddy, but he has seen more specialists (infectious disease) with the hopes of finding out if SOMETHING else is causing his continued pain, problems, and frustrations.  They have diagnosed a sinus infection and a cold, but it seems like more is going on because his throat is still very sore and raw looking.

It's hard to imagine that he will be out of the hospital and ready to fly to his Houston doctors on Sunday, but we will cross that bridge when we get to it.  Many thanks for the prayers and the encouragement.  Thanks also to my coworkers who have been so understanding when I end up working from the hospital, instead my normal desk.  I'd be lost without them!

My Fantasy Guy

Tyler showed a definite upswing in energy this evening.  He slept much of the day and felt lousy through the afternoon, but around dinner time he actually felt like a little bit of the congestion was clearing up.  I was certain that he was feeling a little better when he made several Fantasy Football moves after he had dinner.  My darling husband is the king of all things related to statistics, so he is a huge fan of Fantasy Sports.

I don't know if the improvement was due to the extra sleep, some stronger antibiotics, or something else (all of you?!?).  I can only hope that he is now on the right path.

He is scheduled to fly back to Houston next week to wrap up the end of his 2nd month on the Ariad drug.  With his illness, we are uncertain if he will be able to make the trip.  Here's hoping a quick recovery is headed Tyler's way.

Breaking the Barrier

Tyler finally broke the temperature barrier this evening and had to go to UWMC for more observation.  He's still feeling pretty cruddy, but I am hoping that he gets some medicine that really helps him get back on track.

The downside is that he is in isolation for at least the next few days, so I (and any visitors) must be gowned from head to toe to even enter the room.  I know that they are trying to protect their other patients, but the isolation procedures makes it very unfriendly for any visitors and caregivers.

The Yellow Brick Road

This morning, the doctors asked Tyler when he wanted to go home.  Tyler said "tomorrow," so they spent all of Tuesday preparing Tyler for a Wednesday departure.  Can you believe it?

After a long voyage through "Oz", Tyler is finally on the Yellow Brick Road towards home!!  Farewell, UWMC!

Hallelujah!

The doctors gave us the best news today!  Tyler FINALLY had white blood cells!  He had .110 count today, with the normal range being about 4.3 - 10.0.  It's a small amount, but definitely a step in the right direction.  Now that he has white blood cells coming in, his healing should actually speed up too.

He's had a decrease in the pain in his sides too, so we are dancing in the halls of UWMC!

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!

Temper Tantrums

I don't know why, but this morning I seem to be throwing a temper tantrum.  It's just not FAIR!

While I am thankful for the many blessings in our lives, I am also envious of those being denied to us right now.  The simple pleasures of sleeping in our own home or eating a meal together seem so very precious when they are denied.  We are approaching the end of a month solid in the hospital and are both extremely tired of this. Tyler can hardly sleep at night because of worries that he will choke on his own saliva.

We really just want to live a normal life!  In fact, boring sounds quite wonderful...

Thank goodness we had a year or two together before we got married, as our entire marriage has been overshadowed by this darn battle with leukemia.  Sometimes we can forget about it for awhile, when Tyler is feeling good and strong.  But it seems like we are always drawn back with a new outbreak.  In fact, those relapses seems to happen anytime I want to travel....  Do you think Tyler is trying to tell me in a subtle way that he doesn't want to travel as much as I do?

I am envious of the family and friends who have started families of their own and are watching their children grow.  We would love to have a family, but treatments have made that unlikely without adoption and our lives are really too crazy right now to add more complications in...

Tyler is sick of being stuck in the same room, mostly in bed, every day.  I am sick of wrestling with whether or not I am making the wrong choice every time I am doing something other than being with him in the hospital.

I know everybody has their own demons and that no life is as easy as it looks.  But for today...  I am thoroughly disgusted with our personal battle and would love to call a cease fire for a few years (or decades?!).

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!

More Excitement than he Wanted

While I had to go earn our daily bread today, Tyler and Andrea kept each other company at the hospital.  Tyler got a CT scan to make sure that the pain in his side is not related to any kidney problems.  Thankfully, they don't see anything wrong with his kidneys.  Unfortunately, we still don't know what is causing the pain or how to fix it.

However, at some point this afternoon or evening, Tyler had some phlegm that was so deep in his throat he was unable to cough it up or suction it out.  This means he was unable to breathe for a few minutes.  Thankfully his nurse and his mother were in the room at the time and they were able to get assistance.  But it does mean that Tyler had a pretty serious and very scary setback today.  He is absolutely wiped out now.

His mouth has been scraped raw again from trying to get suction deep into his throat, so he is not ready to eat or drink anything after that.  They are trying to get his platelet count higher, but there is apparently a shortage of platelets at the blood bank.  Platelets actually don't last very long, so they need frequent donations for them.  Tyler's blood type (B Negative) is a tough one to match, so they typically have been giving him "reduced volume" platelets.  The reduced volume platelets have most of the blood type identifiers removed.

But this does bring to light the fact that we really need to get out there and donate blood!  I would hate to find out that they can't get a bag of platelets or packed red blood cells when Tyler needs one.

Only two tablespoons of platelets are collected from each whole blood donation, so (especially if you are B Negative) you might want to consider an apheresis donation.  This is where they extract your blood, spin out the platelets, and then give the rest back to you.  Your body will replace the platelets within 72 hours!

To find a whole blood drive in the Puget Sound area, you can search out a blood drive in your area.

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.

When it Rains, it Pours

Tyler has finally been put on TPN, so that he doesn't have to feel the pressure of eating each day to keep up his strength.  Hopefully this is just a very short interlude, as we want him to be back eating as soon as his mouth and throat have healed.  But for now, it gives us all peace of mind to know that he is getting enough nutrients to keep going without losing too much more weight.

Unfortunately, Tyler seems to have pulled a muscle on each side of his abdomen.  The muscles spasm when he sits or stands up, so he has had to use the morphine even more to deal with the pain from that.  I was hoping that he could take a muscle relaxant to break the pain cycle, but he isn't swallowing right now so that is out of the question.

He's dealing with several annoying or painful issues right now, but I just keep hoping that each day will be the day that we turn the corner.  I can say that his vision has improved somewhat, so he is able to see the computer screen again.  For several days, his eyesight was too blurry for him to even check his stats online.

We are just in cruise control right now, and hoping to come around the corner soon.

Finally!

I can finally see my husband's neck again.  They convinced the surgeons to remove the line in his neck and he now gets to lay on either his right or his left side!

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.

One Night Stand

The nurse is now telling us that they have a bed reserved for Tyler on the 7th floor again because he is no longer requiring ICU level of care. Hip Hip Hooray! So, while I hate to pack up the bags again, it is a relief to know that Tyler has improved since this time yesterday.

They are not going to dialysize (sp?) him at this point either, as his kindey function has continued to improve throughout the day.

He's eaten a little bit of food today and I definitely feel that he is looking more alert today.