Scraping the bottom

Tyler continues to have extremely low blood counts because his marrow isn't healthy enough to make mature blood cells. He keeps turning out teenagers (blasts), but they just won't grow up and get a job!

Anyways... Tyler coordinated with SCCA to get a double dose of platelets on Monday in preparation for the trip to Houston on Tuesday. Unfortunately, when he woke up on Monday morning, he was spitting up blood. That is one of the signs of low platelets, so he immediately started calling SCCA to see if he could go in early for his transfusion. When he got his blood count back, he had a 1 for his platelet count. The normal range for platelets is 150-400, but Ty's counts have been below that for years. The doctors transfuse him when he gets below 25, just to avoid any unnecessary bleeding.

He ended up getting 3 bags of platelets on Monday because he had been way lower than expected. Thanks goodness for the Puget Sound Blood Bank and the many generous donors in our area! Tyler would not survive without your lifesaving donations. If you have not donated blood before, i urge you to try it once. It is a really easy process for almost everyone that qualifies. In fact, my mom jokes that it is like opening a tap in her arm! :)

Ty-Fighters Day 22

So far the Ty-fighters seem to be working really well. I've been taking the drug for 3 weeks now and, as expected, my white blood cell count and neutrophils have dropped very low. Being neutropenic gives me less energy, and puts me in a much more precarious position for getting infections, fevers, etc.... So far I have not been sick, but I'm being very careful and doing lots of hand washing, drinking lots of fluids, sleeping, and eating well. I have needed to go to SCCA every other day for blood draws and transfusions. Most of the transfusions have been to give me platelets, but I have also needed some red blood cells a couple times. The reason I believe that the drug is working is because on Day 1 when I started the ponatnib, my blast % was at 79%.....meaning that 79% of the cells they looked at in my blood sample showed disease. Every blood draw since day 1 has shown the blast % to decrease, with my most recent blood draw showing that percentage down to 10. That was on day 20.

Clearly the amount of Ty-fighters have decreased, but the Stormtroopers have decreased far more significantly. Actually, my day 20 blood draw showed a slight increase in white blood cell count and my neutrophils doubled from 30 to 60 which may be a good sign. Any sign of an increase in neutrophils is good and I will know more tomorrow. So now it's off to recruit more Ty-fighters and get some good sleep.

Clear eyes.........Full hearts......Can't Lose!

Tyler

Ups and Downs

Last week, Tyler had some serious ups and downs.  On Monday night, he woke up about midnight and found, after blowing his nose, that the blood wouldn't stop.  Since his platelets had been low on Friday, we were certain that a low platelet count was the reason that he couldn't clot.  We went to the ER and, after about 4 hours, Tyler got a bag of platelets and finally the bleeding stopped.

The doctors really wanted to observe him for a few hours, to make sure that there were no lingering effects from the blood loss, so he got admitted for the day.  Thankfully, he was able to come home mid afternoon, after another bag of platelets.

He went to SCCA on Wednesday to check his blood counts again and learned that he needed some red  blood cells, so he got more transfusions on Wednesday.  And again on Thursday and Friday...

We were nervous over the weekend, but he made it through safely.  We also got to enjoy the comedy of Jim Gaffigan on Saturday evening, which was a surprise treat for Tyler. (Hot Pockets.....)

He heads to Houston tomorrow for his Day 15 appointment. I am predicting that Tyler will spend about an hour in the waiting room, a half hour with the doctor, and 3 days in Houston overall.  I'm really glad that most of our treatment has been in Seattle!

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.

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 15 - Batting a Thousand

Tyler was back to his normal ways getting a bag of platelets again today, but the news from the lab was still good. His white blood cell count hit 1000 today. Normal ranges are 4000-10,000 so this was an amazing step. The Neutrophil count was 870 and we are looking to get them over 1000 as well.

Acute GVHD typically rears its head within the first 3-4 weeks after transplant in 2 out of 3 transplants with related donors, so that's the next thing I'm keeping an eye out for. Hopefully the symptoms are mild and treatable, if Tyler is in the unlucky part of that equation.

Thanks for the celebrations via blog comments and e-mails. We can't quite believe that the new marrow has started production and is churning out new blood in such quick quantities.

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.

Day 4 -- In a Drug Haze

It seemed like Day 3 might never end, with blood products and drugs running long into the night. But, here we are on Day 4 post transplant. Tyler's throat hurt a little bit more today, but we see no signs of the fever and the coughing has essentially disappeared.

One of the side effects from his chemo yesterday are long bouts of violent hiccups. He had something similar with his cranial spinal radiation, but seems to be suffering through these bouts even longer.

Today, they started Tyler on his graft versus host disease (GVHD) drugs. GVHD is a condition where the transplanted cells (graft) attack the patient's organs (host). It often begins as a rash (as your skin is the largest organ you have), but can lead to even more serious complications. Acute GVHD occurs within the first 100 days post transplant, while chronic GVHD appears more slowly than that.

GVHD is more likely if the donor was unrelated to the patient or if there is a tissue mismatch between the patient and the donor. In Tyler's case, his dad is only half match (think back to High School Biology and genetics training -- half of the genetic material is from the dad and half from the mom) so it is likely he will experience some GVHD. In fact, some GVHD is good and is termed the Graft versus Leukemia effect. This recognition of the leukemia cells as unhealthy or foreign can reduce the rate of relapse, as the transplanted marrow and it's blood can kill off any leukemia that might be hiding in the patient.

Tyler's protocol called for the introduction of tacrolimus and mycophenolate mofetil today to combat the possible GVHD. He will likely continue to take those until 6 months post transplant.

Another new medicine today was Filgrastim. This injection actually stimulates the growth of neutrophils (a kind of white blood cell) in the body. Its goal is to help Tyler's new immune system grow as quickly as it can. He will likely continue to receive this injection until his counts have recovered.

We hope that Tyler does indeed continue to grow some new blood and new white cells. He got transfusions today and the last two days before that, so I am hoping that he can have a day off tomorrow. There are so many extra vitals checks with transfusions that it fills up the day a bit. With tomorrow being Sunday and Tyler (hopefully being filled up with blood) off from transfusions, we are hoping to watch the Superbowl in peace and quiet.

Our Home Away from Home

After spending almost 2 months at UWMC this fall, we feel like it is our home away from home. So much so, that we decided to check in the night before our scheduled visit here.

Actually, there was a mixup with Tyler's blood order and they didn't get it to SCCA in time to transfuse before they close. So, they transferred us to UWMC to get the needed red blood transfusions before his chemo dose today.

The chemo went fine today, with minimal side effects, so I am very thankful for that. We're hoping for a quiet night and then release tomorrow. Tyler had a fever last night, but it broke during the day today. He still wheezes when he exhales, but hasn't been coughing as much.

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.

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

2 Marathons Run

Tyler and I have just completed 2 marathon days at SCCA. On Wednesday and Thursday, they gave him two chemo treatments each day, which meant we arrived at SCCA at 7:30am for a quick lab and then headed up to their infusion suites to begin the day. We left between 9:30 and 10pm both days, so we had long days.

Most of the day was hydration and side effect management for a drug called Cytoxan. Tyler only has to get that drug these two days pre-transplant, but will get a 3rd (and larger dose) a few days after transplant. For the transplant protocol he is on, Tyler had to get 4 hours of hydration before they could even start giving him the drug. That's because this particular drug can cause your damage to your bladder. Tyler got so hydrated that he ended up having to urinate (or "void" according to the medical staff) every 60-90 minutes. That kept the chemo from settling in his bladder and causing trouble.

His other chemo was called Fludarabine (or "Florida Bean" as we like to call it). He gets it daily Wednesday through Sunday, but it is a quick one and takes less preparation.

Tyler did FANTASTIC both days! No nausea during the treatments and tons of eating both days. I sincerely hope that this continues through the transplant day next week. After almost a week of isolation, Tyler and I are both thriving on the chance to be together again, so we just spent the days keeping company and enjoying the hours we could be together. Everything is easier on us both if we can be together and strengthen each other.

With the treatments, his blood production is beginning to fall off. We expect that he will get several transfusions to tide him over until his dad's marrow takes hold and begins to make new blood for Tyler (likely about 1 month from now). We begin that today, with 2 units of red blood cells scheduled.

Transplant -4 and counting!

Dinner is Served

I thought some of you might be interested in seeing more about my nursing duties. Pictured at right, you can see Tyler's TPN. This is the supplement we use for Tyler's nutrition, as he isn't eating full meals yet. He gets an IV each night for a 12 hour period. The blue and gray pump on the left side of the bag controls the speed at which the liquid is infused. Thankfully he sleeps most of that time, and is only partially bothered by a permanent attachment. The IV is contained in a backpack and he just needs to remember to take it with him for any nighttime wanderings.

To prepare the TPN, I take the bag of stuff and add 3 vials of vitamins to it. I've even got my own "sharps" disposal, as I go through 3 needles per night. It's a very serious business, but I've gotten fairly quick at mixing stuff up. I just have to remember to pull Tyler's TPN bag out of the fridge at dinner each night, so that he doesn't have to suffer through liquid ice cream at night. He gets plenty chilled when moving to a new room these days, so I shouldn't add to the freezing.

Testing our Patience

Today is the big day for Tyler's Day 14 tests. He had a bone marrow test scheduled this morning at 11am and a lumbar puncture scheduled at 1pm. The marrow test started as scheduled and they got a great bone chip from Tyler's pelvic bone for the biopsy portion. Unfortunately, when they got to the bone marrow aspiration (where the liquid marrow is drawn), they just couldn't get any to flow. They tell us this is not entirely unusual for post-chemo patients, but I was disappointed that they couldn't get that portion of the test complete. They tell us they will get enough information from the samples they got to determine if the cytarabine worked or not. The next bone marrow will be on Day 28.

The lumbar puncture has been delayed to try to finagle Tyler's platelet count up. The test requires a platelet level of 50 and Tyler has been hovering around 5-15 for awhile now. Added to that, they are not seeing much of an increase with each bag of platelets that he receives. They decided to test him to see if he has developed antibodies to blood products.

Anyways... They gave him a bag of platelets yesterday and 3 units today. After the 2nd bag, his platelet count was up to 33. After the 3rd bag, his platelet count was still at 33, so we're expecting the radiology folks to balk at doing the procedure today. He's got his 4th (and final) unit of the day hanging now so that the platelets can be running while they go into the procedure, but that is our last shot for today.

Hooray! They just announced that they will take him, despite the low platelet count. Hopefully they can get his spinal fluid to flow today. It seems to be a problem for them to get a good sample.

Thanksgiving Blessings

My family has set a tradition of celebrating Thanksgiving together the Saturday before the real holiday. It's nice not to worry about conflicts with the other side of our family and to have a reason to get together with my family. This year was a little bit different than previous years because one cousin gave birth to a young boy a few weeks ago, another cousin gave birth to a little girl on Wednesday (see me holding Audrie at left), my Grandmother had surgery on Thursday, and my husband is in the hospital recovering from chemotherapy. Nevertheless, several of us gathered and discovered that one of the things we are most thankful for is to be a part of the same family. As many of you will likely be spending time with family this holiday, I hope that you find as much joy in spending time with your family as I find spending time with mine.

Tyler continues to fight throat pain, but we are hoping that this week wil begin the slow climb up. Tyler essentially has no blood making ability right now. He's got no white blood cells, almost no platelets or red blood cells. He's been getting transfusions each day to get his platelets and red blood cell levels up to a minimal level. The doctor says that a typical patient might start getting better on about Day 17 after the start of this induction therapy. We are currently at Day 11, so I am hoping to see some improvement over this next week.

He is scheduled for both a bone marrow aspiration and lumbar puncture on Tuesday. If those tests show that the first round of cytarabine had a good result, than they will likely continue with one more round of this induction therapy before proceeding to transplant in January. While I do not wish another round of this chemo and mucositis on Tyler, I do hope that we have finally found the right treatment path to get Tyler healthy again.

Tyler and I thank all of the many hands that have helped us keep our lives going, the many friends who send e-mails and comments to encourage and comfort us, and we wish you the best of holidays!

Mandy

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

My Heart is Breaking

I hate to see Tyler in such pain, especially as there is absolutely nothing I can do to help. His throat is closed up so tight and causes so much pain that he is not eating or drinking anything. He's hungry and weak, but is unable to get anything down his aggravated throat. He's had less than a cup of milk and juice today. Thankfully he had several cartons of milk yesterday, but he wants to eat and just can't do so.

Tomorrow he will be getting a PICC line installed so that he can get nutrition through an IV. The doctor decided today to hold all of his medication except for 3, 1 of which he can get through IV. Still it is a struggle for him to swallow those giant pills. I think the pill makers might need to think about shrinking some of the pills a bit. When your throat is swollen, the idea of a giant pill is more than one can bear.

We spent our weekend at the SCCA, and then spent more time there today. He's gotten transfusions of both Red Blood Cells and Platelets, as well as some saline to help him hydrate through the esophogitis. He got a unit of platelets on Sunday and two more bags this morning, but still only got to a count of 47. The all-important lumbar puncture requires a minimum of 50 for a platelet count, but our doctors begged and the UW somehow agreed to do the procedure despite the slightly low count. We hope that the CSF they took today will indicate no leukemia at all and we can begin to focus on the next phase of this transplant.

We're back to SCCA for more transfusions tomorrow and I hope that it will be an easier one for both of us. Please pray that I have gentleness and patience as I encourage him to eat something tomorrow. I'm not being a very supportive partner this weekend because I am so worried about him. I need to push less and help more.

Because Tyler has barely eaten in the last 5 days, he is sleeping most of the time right now. With that in mind, we need to ask that phone calls are kept to a minimum for the next several days. We'll continue to post as we are able to, but we appreciate your understanding that it's hard to field phone calls when you are feeling beaten and tired.