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.

It's a Small World

I must admit, I have become a big fan of blood over the last 3 years!  The work done by the Puget Sound Blood Center is amazing in terms of making it easy for people in this area to donate blood and providing a valuable service for patients in need.

I was pleasantly surprised to see that the latest blog entry about our local blood collectors featured my dad's cousin, Tom!

http://psbcblog.com/2010/04/the-unsung-roadies-of-puget-sound-blood-center.html

Thanks for all of your hard work at the blood bank!

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.

Last Days for the April Card of the Month

Only a few more days to purchase the April card of the month. If you wanted to purchase this month's card (or know someone else who wants to), you can go to http://bledsoebattle.blogspot.com/2010/04/to-continue-our-fundraising-efforts-for.html to place your order today.

I will be mailing the cards soon, as they are in my car to be delivered to the post office.  :)

Thanks for your continued support!

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.

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!

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.

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.

Nothing if not Confused

This morning our nurses came in to introduce themselves and we learned that Tyler would have an ICU nurse, her ICU nurse trainer, and a dialysis nurse. The dialysis nurse told us that they had Tyler scheduled for 8 hours of dialysis today (up from the 4 hours we were told yesterday). I asked what his phosphorus number was today. Apparently Tyler was at 9 yesterday and the normal range is more like 3-4 or so. But today he was at 8.3 with his 6am lab draw.

Despite that, they had planned to continue with the dialysis this morning, although at a reduced rate because of his low blood pressure (which accounted for the longer time involved). But his pressure is improved and the doctors thought that they might be able to bump up the rate a little bit if he stayed where he was.

However, just a few minutes ago, our nurse popped her head in to say that they were delaying the dialysis until after Ty's noon lab results are in. It sounds like the doctors hadn't seen the 6am result when they talked to us. Since he dropped from 9 to 8.3 between midnight and 6am, they want to see what his kidneys can do on their own in the next few hours.

Tyler is doing his part to clear out all of that cell waste, so hopefully it is enough! I'm glad we are waiting for now. I don't want him to have to do more blood filtering out of that giant tube in his neck!

A Higher Level of Service

The staff at UWMC finally made the decision to move Tyler into the ICU unit. While he is fairly stable right now, his blood pressure is very low and he is running a fever. In order to provide more observation and a higher level of care, they have moved us into an ICU room.

They also want to run the dialysis process for him at least once tomorrow to help his body clear out the excess phosphorus that has built up from the cells dying off. His kidneys have not failed, but they are certainly impaired right now. We are hopeful that his numbers will have improved in tomorrow morning's labs and we can prove to them that his body can do the cleaning on its own. They assured us that this isn't a permanent diagnosis at this point, just a way to help his kidneys through a rough patch. I guess it is a bit like hiring a temp kidney to take on the extra workload.

His latest white blood cell count was 4, so he's definitely dropped way down in that area. We expect to see further drops with the next couple of lab tests. So far no sign of nausea from the chemo, but it is only a matter of time. Last time if was a salad that did him in and he couldn't eat it for months. I think I'll steer him away from salads for now....

Hiccups after Lunch

Andrea and I decided to sneak down to the cafeteria for lunch this afternoon, as Tyler was doing pretty well and I suspected he might appreciate some down time.

When we got back, we found that they'd had to stop his 2nd bag of fresh frozen plasma (the clotting portion of the blood) because he showed a fever. He actually was showing signs of the fever before they started the blood products, but had to stop to protect him anyways.

As the nurse went to help him sit up, she noticed that his neck was still bleeding down the back and was concerned about the amount of blood there. She had cleaned the wound before lunch and thought that the various procedures they had tried this morning should have stopped or at least slowed the bleeding.

After a huge flurry of activity and a lot of concern about the amount of blood that he has lost this morning (our nurse estimated a pint lost), a surgeon has just arrived to suture the neck wound closed a little more. If that procedure does not stop the bleeding, they will have to pull the line and so his neck up entirely. They are hoping to keep the line in for at least the rest of today, just in case Tyler might need dialysis.

Let's hope this works!

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). :)

You wanna stick that WHERE?!?

Tyler had a neck catheter installed tonight for his pheresis process. It's a scary thing when someone tells you that they are going to stick a tube into the vein in your neck, but it is even worse when they do it before the lidocaine kicks in. Thankfully he survived the experience and has been promised a pain pill to get over the trauma of it.

***oops... Maybe I spoke too soon. The surgeon just came back to take another look at Tyler's neck catheter. ***

They plan to start the pheresis soon and it should take about 4 hours. After that, they will start Tyler's chemo regimen. They are watching him like a hawk and testing his blood and vitals often. Hopefully nothing changes for the worse and they get through the immediate crisis.

Thanks for the comments to the blog and e-mails of encouragement. We are so very thankful to know that Tyler is loved and that you all wish him well as much as we do.

I'll try to update more as we know more, but I suspect my next post will be in the morning. Thanks again for the offers of help and love and prayers.

Situation worsening

Tyler's body is showing signs of Tumor Lysis which is the sloughing off of dead cells. The bad thing about this is that they haven't started treatment yet. They say that the next 24-72 hours are critical to make sure that Tyler's kidneys are able to handle the increased workload. They will be monitoring him carefully to make sure that the fluid in his lungs does not increase significantly while they give him the fluids needed to clear out the dying cells.

They will be performing a pheresis process on him tonight to filter the extra white blood cells out of his blood immediately.

He is at risk for dialysis (if his kidneys can't keep up) or being put on a breathing tube (if the fluid in his lungs get too great). This is incredibly scary, so I do beg for as many prayers as we can get over the next 24-72 hours. We hope he turns the corner soon and can begin to go back to normal body operations.
.

Prayers urgently needed

At our appointment this morning, the blood test showed that Tyler's blast count had climbed really high. His white blood cell count was 104.73, when normal is supposed to be 4-10. Of the white blood cells found, over 90% of them were blasts.

They are immediately initiating several different chemo attacks to kill off the blasts in his blood, but there is a risk that he might have to go into the ICU here if his body can't handle the high cell turnover.

They are also cautioning us about the possibility of the blasts sticking in his lungs and causing breathing problems (which they might already be doing based on his shortness of breath) or blasts sticking in his brain and causing difficulty in processing thoughts (which we haven't seen yet).

Please pray that Tyler responds quickly to the treatment, but doesn't get moved to the ICU because of complications.

I will try to update more when we see how he is responding.

Mandy

Team in Training Cardmaking Fundraiser

My friend Pam has joined Team in Training, through the Leukemia and Lymphoma Society, to raise funds to fight cancer while pursuing her goal of riding in a century bike ride. The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. They have invested more than $680 million in research since 1949 - over $69 million in 2009 - specifically targeting leukemia, lymphoma and myeloma.

Please join us in a Create-a-Card fundraiser to benefit The Leukemia & Lymphoma Society and Team in Training. Each participant will be able to make 6 cards, in 3 different designs for only $15. I will also donate 20% of any sales at the event (my earnings) to Pam's Team in Training efforts.

If you can't make it to the event, you can still donate directly to Pam by clicking on her name above, but I hope to see you there!

Thanks for helping us raise money for this worthy cause!


When: Sunday, April 25, 2010 2:00 PM
Price: $15.00 per person

Where:
Lakewood Seward Park Community Center
4916 S Angeline St
Seattle, WA 98118

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.

April Card of the Month

To continue our fundraising efforts for the Leukemia and Lymphoma Society, we have selected a new card to sell on the blog this month. You may purchase as many copies of this card as you want. If you purchase 5 or more cards, you will receive a bonus card of another design in your package.

April's card is the blank firefly card pictured on the left. It is a 4-1/4" x 5-1/2" card with a cream base with rust paper and olive ribbon. The rust paper pattern may vary from the design shown in this photo.  Each card is only $2.50, which includes a matching envelope.

To purchase the April card, please click on the Buy Now button below. If you receive our post via e-mail, you can reply to the e-mail with the number of cards you want.

Thanks for helping us to continue our fundraising!

Falling off the Wagon (or is it back on??)

While I posted my last message, Tyler was getting an MRI of his spine at SCCA.  It ended up taking 3 hours, rather than 2, so the rest of our appointments got off schedule as well.  When we finally got into the Infusion area, where Tyler was scheduled to get 2 bags of platelets (in preparation for a lumbar puncture that afternoon), the nurse there found that he had a temperature. 

He'd actually shown a low grade temp that morning (about 99-100), so we had asked a different nurse to check him out.  Unfortunately, his temp had moved out of the "low grade" area (102.1) with the first temp taken on the infusion floor.  They tested again a few minutes later and the temp was at 101.9.

Because of that, the kind nurses and doctors convinced to accept the top notch accomodations available at UW Medical Center.  Tyler was actually in the hospital Tuesday through Friday of last week.  They tested his blood (every day) for infections, but never found any signs of a virus.  Despite that, his temp fluctuated up and down and he has a cough and congestion.

He came home on Friday afternoon, but is worn out and feeling kind of crappy.  We spent a low-key weekend at home, with Easter being highlighted with a visit from our family (who came bearing DINNER -- my favorite gift of all!!) and a little movie watching.