Blessings and Challenges

Simply put, Tyler is not doing well. His health has declined significantly over the last month and his energy level is nonexistent. He gets winded when he needs to get up to walk into another room, so you can imagine how he feels after climbing the stairs to our bedroom. It often takes him 15 minutes or more to recover from that exertion.

With that said, we are amazed at the goodness and generosity that we see in our friends and family. After I posted the message about getting a matched donor for Tyler, many of you have asked me if you could do that for Tyler. Thank you for being willing to help. The easiest way to see if your platelets would be a match for Ty is to donate at the Puget Sound Blood Bank. The doctors have submitted the paperwork to have the blood bank search for a community member who matches Tyler. I don't know all of the details about the matching process, but I do know that we have asked about a friend or family member donating directly to him and were told that having a loved one do that would significantly increase the cost because of the testing involved.

On the good side, Tyler has started a new medication designed to stop/slow internal bleeding. We have been having lots of trouble keeping platelets in him, but his black eye and bruised hand finally convinced a nurse to bring a doctor in to see Ty and they prescribed Amicar to help his body slow any bleeding down. the nurse that day was in shock because Tyler had dropped from 31 platelets (right after his transfusion) to 1 platelet when he was checked two hours later. I actually wasn't surprised because I had noticed that Tyler was always spitting up blood again by dinner time.

With the addition of the new medicine, his mouth sores have begun to heal and his bleeding has appeared to stop. Although he looks like a victim of spousal abuse, his eye actually looked better to me today too. It has taken on the really vivid purple that bruises get at their peak.

Many of our loved ones have been sick, so we just want to remind you to wash your hands often so that you can stay healthy yourself! We will need to avoid you until you are healthy, but please don't take it personally.

We wish each of you a happy and HEALTHY new year.

Christmas Wishes

The attending physician at MD Anderson suspected that Tyler's fever and chills were most likely due to platelet reaction, rather than an infection since Tyler didn't have any signs of fever after at first night. Although they wanted to keep him on antibiotics just in case, they agreed to let us fly home late on December 24th. While we are ecstatic to be closer to our loved ones, I still have some very big concerns about Tyler's health. After getting two bags of platelets in the hospital yesterday, he still was bleeding in his mouth during the plane flight and all night long. His platelet count just doesn't seem to be bumping up much or holding at all. They will most likely have to move towards matched platelets, where a member of the community will be asked to donate specifically to Tyler, rather than using the pooled platelets from normal blood drives. The idea behind matching the platelets is that Ty's body will be more likely to accept everything in the bag, rather than just the few that match from a pooled bag.

On the Christmas front, we can hardly believe that it is! We got home around midnight PST last night, so we went straight to bed. I'm hoping that Tyler will feel up to celebrating Christmas next weekend. We might be more together by then. :)

We wish you all a wonderful holiday!

Mandy

Staying south

Unfortnuately, Tyler experienced some complications after his bone marrow aspiration yesterday and had to be admitted to the hospital here in Houston. As he was leaving the BMA, he had severe shivers and (although he was fine right at the end of the procedure) had a temperature that spiked up to 103 in a very short time. We spent the afternoon in the ER and then transferred to a bed on the 16th floor. The fever broke overnight, most likely in response to the antibiotics that they started him on, but we will probably be in Houston for at least a few extra days.


We are both upset about being stuck in Houston for Christmas, but we had planned on a very quiet Christmas anyways so this just makes sure that we abide by that.

His platelets were back down to 1 today, so they are giving him another transfusion now. Hopefully yesterdays platelet's were just eaten up by the fever yesterday and he will still be able to get by with transfusions every other day for a while longer.

Best wishes for a happy and healthy holiday to you and yours!

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.

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.

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). :)

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.

Giving Good Blood

I gave blood at my office's blood drive today. My blood just about stopped several times today, but eventually I made it to the bare minimum for a donation. I felt kind of bad for my blood tech though, as she was really working to get those last few drops. She did joke that I must have an abundance of platelets, as I started clotting immediately after she removed the needle. I was the 2nd person to start donating this morning and the 7th one to finish. I envy those of you with nice big veins!

I encourage you to find a blood drive in your area and donate your own pint of blood. While it isn't my favorite experience (this isn't usual from all of the people I've talked to), it is something concrete that I can do to help Tyler and others like him.

Speaking of my handsome husband... Tyler was feeling great after Monday's lab draw. His counts looked fantastic and he felt good. In fact, he felt SO good that he talked his dad into golfing in the rain. Or, as Scott shared with me, Tyler kept trying to convince him that the rain was letting up.

WBC: 7.23 (normal 4.3-10.0)
HCT: 31% (normal 38-50)
PLT: 97 (normal 150-400)
ANC: 5.13 (normal 1.80-7.00)
Potassium: 4.5 (normal 3.7-5.2)

He's been on IV Magnesium or Magnesium supplements in pill form for several weeks now, but that number was in the low range of normal as well.

He's able to eat more at each meal than he was just a month ago, so he's building strength again. The first time that Scott, Gump, and Tyler went golfing (post transplant), Tyler had to rest often along the way and was wiped out for the rest of the day. This time, he didn't have to sit down and rest during the outing and still felt good that night.

On Sunday, he had his first driving experience in about 6 months as he drove us to dinner that night. Although it felt strange to him on the way to the restaurant, I think he settled back to normal by the time we headed home.

Day 37 - Only Monkeys Eat Bananas

Tyler has tested high in Potassium a couple of times this week, so the doctors want us to carefully monitor (and attempt to lower) his potassium intake. The normal range is 3.7 to 5.5. Potassium is one of the electrolytes that is important for heart and nervous system health. A potassium level greater than 7.0 can cause cardiac arrest, so it is a very serious thing that Tyler had a 5.5 in his test on Thursday.

A high potassium level can indicate impaired kidney or adrenal function. To avoid any such complications, we are cutting Tyler's intake of milk, beef, pork, beans, bananas, and anything else with high potassium.

As for his other test results, they looked great.

WBC: 4.03 (normal 4.3-10.0)
HCT: 30 (normal 38-50)
PLT: 91 (normal 150-400)
ANC: 2.22 (normal 1.8-7.0)

We'll keep you updated on changes to the potassium situation. For now, we just have an extra blood test on Friday, followed by the first of 4 lumbar punctures Tyler will need to get over the next two months.

Day 27 - Seeing a Golfing Theme

Tyler's father, Scott, chauffered Tyler around today to blood draw and some more golf.

First, the test results from today:

WBC: 2.38
HCT: 29
ANC: 1.6
PLT: 64

They tested the level of tacrolimus in his blood and determined that it was a little bit higher than desired, so they have lowered his dosage for the next few days. He'll have another level taken with the Thursday morning blood draw.

According to Tyler, he and Scott and Gump (Tyler's brother) had to squeeze a little bit of golfing in today as they were all in the same neighborhood at once. They headed to the Pitch and Putt at 128th and played through that course. It sounds like Tyler enjoyed himself, although I imagine he will be pretty sore tomorrow after all of that exercise. I haven't heard how each member of the trio did, but I imagine they were all enjoying the outing. They've had some great times golfing all over the state.

Day 18 - Happy Valentines Day!

Tyler's blood test results were something to love today!

WBC: 3.68
HCT: 31%
PLT: 13

We hope that his platelet level continues to stay above 10 tomorrow, so that we don't have to stay for a platelet transfusion.

It was nice to have such a quick and easy day at SCCA. We went in for a blood draw and didn't have to wait at all -- there were no others there at the same time. Then we went up to the 6th floor to get the results of the test. The charge nurse said that we could go. Talk about an easy day at the doctor's office.

On the down side, we think Tyler is starting to show some signs of GVHD. We hope that it doesn't get much worse, as it makes his stomach feel unwell. Eating is enough of a challenge, but we could use all of the relief possible from eating related challenges.

We hope that each of you got to spend time with your loved ones today.

Day 16 - Punchin' the Time Clock

Sometimes Tyler and I talk about how fighting cancer is a full time job. Tyler works every day to eat and exercise and sleep enough for his body to heal. It's definitely a lot for him to worry about, especially if our schedule is disrupted.

Today was one of those days that felt a bit like work. We had our first appointment at SCCA at 9:15 this morning and didn't leave until just after 5pm. There is cause for celebration after today's visit, however.

After our lab appointment we had clinic with our team nurse and team doctor. They schedule these once a week to keep tabs on Tyler and make sure things are still going well. Our nurse, Jackie, checked Tyler's vitals when we first got there. When our doctor, Peter, got there he asked if Jackie had told us the good news. Jackie hadn't said anything about good news, so they got my curiosity up.

Still we had to ask what was up. It turns out that Tyler is doing SO well that they are stopping the IV antibiotic and switching the Tacrolimus to pill form. We were going into the clinic for daily infusions for those two items, which meant at least a few hours there every day. With this schedule change, we think most of our days will be lab draws, once a week clinics, and physical therapy appointments.

In addition, they will be stopping the Filgrastim shots either today or tomorrow. They've warned us that the blood counts will probably drop a little bit once they stop giving Tyler that booster shot, but we can live with that (especially since the shots are painful to get).

So... Are you ready to hear Tyler's blood counts from today?

WBC: 2.11 thousand (normal 4-10)
ANC: 1.79 thousand (normal > 1.0)
HCT: 26 % (normal 37-52%) --> We got red blood transfusions today
PLT: 17 (normal 150-400)

His hematocrit (HCT) was 26% yesterday, so I was pleased to see that had held steady. And his Platelets (PLT) got a good bump from the platelet transfusion yesterday.

Day 14 - Climbing the Mountain

Tyler posted more increases today -- .39 for his white blood cells and .33 for his neutrophils. The Filgrastim shots that he has been getting have helped boost the percentage of neutrophils in his body, so that is partially responsible for these great boosts.

Another good note for today is that Tyler held on to enough Platelets from yesterday's bag that he didn't have to get a transfusion today for the first time since January 28th.

That's all for tonight, folks...

Day 13 - Lucky Number 13!

Today's blood test showed the first glimmers of White Blood Cells! While our doctor cautioned us that the counts will probably fluctuate up and down for awhile, we are THRILLED to report that Tyler showed .16 WBC's today! AND he had .13 neutrophils mixed in there.

We had our first outpatient clinic, but it really took a backseat to the exciting test results we got. Tyler did get a platelet transfusion and some IV drugs, but it was a pretty quick day at the clinic. I'm hoping that these glimmers of WBC's mean that Tyler will start providing enough healthy blood to stop these transfusions.

They are still playing with the Tacrolimus level in Tyler's blood, but hope to get that settled over this week. Once they've established the correct dose for Tyler, they will probably switch him to the pill form of the drug to cut down on the number of scheduled IV's needed.

Hooray for the great test results today!!

Day 9 - Surviving the Rough Patches

We've had a few rough days, but Tyler is hanging in there. He just feels generally crappy some days, and that's hard to take. He's been so strong and healthy for 40+ years that to be increasingly sick over the last 6 months has taken a big toll on his spirits. He's having trouble sleeping and eating, but that is to be expected for this period of the transplant and in hospital life. Thankfully his mucousitis is nowhere near the pain that he experienced in the fall and he is still eating lots of different foods.

The doctors have been a little bit concerned because Tyler doesn't sem to be holding on to his platelets right now. Every day he is at about 10 (when normal ranges are 150-400). He gets a bag of platelets and we would expect to see a bump of about 10, but he just isn't getting the expected bump in his counts. Getting transfusions isn't a big deal anymore, but it's just one more thing added to our day.

They tested him for antibodies to Platelets and we are relieved that he still hasn't formed antibodies to them. Apparently, after many transfusions, your body will actually develop a resistance to blood products. This makes it much more difficult for the patient to get a transfusion bump, as their body will kill off the "foreign" cells.

We are hanging in there, but he is starting to crave some new foods. We find that moist foods work best with his sore throat, so he eats a lot of soup and drinks shakes. He mentioned today that he might have me smuggle in some frozen dinners to have some new food options. I'm eating more than my share, but Tyler thinks the food here could be improved.

Sorry for the long delay in posting. I know that several people are waiting to hear the news, especially considering that this is such a big deal in our lives. Thanks for bearing with us and reminding me to post if I go to long. :)

Day 5 - Superbowl Sunday

We were rooting for Arizona, so we were disapointed to see the Steelers sneak past them again in the last few minutes. But... At least it was a good game to watch, right?

And I forced us to stay awake to watch the Sounders Super Search after the game. I'm thrilled that we finally have an MLS team and can't wait to start watching games for that team. Although neither of our favorite players made it on to the team, I think it was a neat idea to allow an unknown to compete for a roster spot on the Sounders soccer team.

Things continue to be on a pretty even keel here at UWMC, so we're continuing to work on keeping Tyler as healthy as possible. His platelets have not been rising with the platelet transfusions over the past few days, but he is holding steady at 10 (normal range is 150-400). On Monday they are testing to see if he has developed antibodies to blood products.

Cough, Cough

Day 2 Post Transplant

We have a new worry, as Tyler is coughing today. We called our team nurse and they added a chest x-ray on to Tyler's morning labs. Tyler is scheduled to check into UWMC tomorrow, so I think that helps them to sit tight on this cough for one more day. Today's labs did indicate a need for both platelets and red blood cells, so we are headed back at 6pm for a transfusion of each.

Tomorrow, Tyler will get a very large dose of chemo. The cytoxan that he got last week was a small dose (14ml??) and the one that he gets tomorrow is a large dose (50ml??), so he may have some increased side effects from that. The prime goal of the cytoxan dose tomorrow is to suppress Tyler's immune system and allow the new marrow to start working its magic.

Let's hope that Tyler's cough is something that can be treated with antibiotics and that it goes away quickly.

Day 1

Day 1: We are now counting upwards towards the 100 day mark when we get to transition to the long term recovery plan.

Tyler had a restful night and woke up to scrambled eggs for breakfast. We are heading down to SCCA for lab tests this morning. They will be monitoring Tyler closely for the next 30 days to make sure his hematocrit (the kind of red blood cells that carry oxygen) and his platelets (the blood cells that are responsible for clotting) are high enough to keep him going day to day.

We've entered a waiting period. About 2 to 3 weeks after transplant, we will see the first signs of engraftment. Most likely, this will be Tyler's white blood cell count showing it's first bump.

As he has virtually no immune system right now, we have to continue to be careful about infection. Tyler must avoid live plants, cut flowers, animals, and sick people. With that in mind we're going to try to hide out at home for the next couple of weeks. I've decided that our sole contact with the world outside should be through Netflix! ;)

Go stem cells, go!!

Scott Bled-soe Much!

Scott's marrow harvest went well this morning, although he is quite sore now. They harvested 2 liters of marrow from him, so they were quite pleased with the collection volume. We talked to Kate a few times today and she told us that, although he is sore, it is possible he may get to go home this evening.

Tyler's infusion has been delayed by at least an hour as they are processing the marrow right now. They are using an apheresis machine to separate the stem cells from the rest of the stuff they collected. They tell us that it will take about 45 more minutes before the stem cell bag is ready to go. I've got a picture of them processing Scott's bag of marrow, but will have to post the picture from home.

Tyler has been queasy since finishing his radiation yesterday, so we're trying to get him more anti-nausea medication and then allow him to rest while we wait. We also are awaiting blood test results to see if he needs a platelet transfusion today. We hope not, but the numbers will be in soon.

Transplant Day!!!!
Day 0

Making Good Blood

Tyler had a few tests today, so we were lucky that the snow held off long enough for us to get to SCCA and UWMC for our tests and appointments.

First off... Tyler had his blood checked today and I'm pleased to report that he's making good blood!

WBC: 2.07 (normal: 4.3-10.0) Hooray for White Blood Cells!
ANC: 1.12 (normal: 1.8-7.0) Hooray for Neutrophils!
HCT: 32% (normal: 38-50) Hooray for a great Hematocrit!
PLT: 97 (normal: 150-400) Hooray for Platelets!

Although he's not in normal ranges yet, I would say he is making FABULOUS progress in blood creation. I was looking through the test results and saw that on Saturday (his first day out of the hospital), he lab tests actually were rechecked for White Blood Cells and Hematocrit because there was a "Significant change in lab result". How is that for a Go Home celebration?!?

On the down side, he continues to have significant problems sleeping at night. We talked to the doctor about our concerns and they have prescribed some medication that we hope will alleviate the discomfort Tyler has been feeling at night. His numb foot is apparently very sensitive and the feel of the sheets causes a great deal of discomfort for him. We're hopeful that our new medicines will help us get a full night of sleep, as we desperately want one!

Now... I'm off for my nap!