Thursday, March 26, 2009

Day 58 - Slow Down and Look Around You

Thursday was another lab and clinic day for us. We had realized the day before the Tyler would get flushed when we delivered his IV of magnesium. When we mentioned it to the nurse, she realized that we were pumping it in to fast. When we got home, I was finally able to decipher the label that said how fast to administer the magnesium, but it certainly wasn't clearly labeled for a layperson. Instead of 100 ml/hr, we not have the pump set at 60 ml/hr.

Test results:

WBC: 6.75
HCT: 31
ANC: 4.72
PLT: 80

Next week, Tyler has his next-to-last lumbar puncture, so we are hoping for a repeat of his last poke. I'd say the odds are against us, but one can always dream!

Tuesday, March 24, 2009

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.

Friday, March 20, 2009

A Great Honor

Our friends, Hans and Cynthia, welcomed their second son into the world on March 2nd. To our surprise and great honor, they named him Alexander Tyler Loland. Tyler and I were both moved to tears by their e-mail about the reasons they chose that as Alex's middle name. They say that the name was not inspired by Hans and Tyler's shared battle against CML, but rather the life we share beyond cancer. It's a good reminder for us that fighting cancer is not the only important part of our life. We hope to meet young Alex soon, but haven't been able to connect yet. I did, however, finally dig up a picture of our newest soccer teammate.

Getting back the shared battle against CML, we are pleased to report that Hans appears to be doing really well on Gleevec. He just had an appointment at the beginning of March. While his BCR_ABL results got mixed up, his blood counts looked good. He's continuing with only monthly doctor appointments for now.

Wednesday, March 18, 2009

Day 51 - More Than Halfway Home

We are more than halfway to the miraculous 100th day! Can you believe it?!?

Tyler is doing fairly well these days. His potassium level has fallen back to the 4-5 range, which is still at the high end of the normal range but is less dangerous. On Thursday, he measured 4.7 for his potassium level. We are allowed to eat some normal food again, although they warned him not to go crazy.

His test results from Day 51 were:

WBC: 7.62 (normal 4.3-10.0)
HCT: 30% (normal 38-50)
ANC: 5.4 (normal 1.8-7.0)
PLT: 73 (normal 150-400)

In the weekly clinic, Tyler was given permission to drive again! Talk about FREEDOM!!! He's still not supposed to be alone for more than a few hours because of the possibility of an infection, but we are thrilled that one of his lost privileges has been restored. Since he hasn't had any pain medication in weeks and hadn't had any anti nausea medications in several days, there are no restrictions on operating heavy machinery.

He also had his 2nd post transplant lumbar puncture (LP) after his clinic Thursday. When I called to check in on Thursday afternoon, Tyler was in a great mood. Apparently, he had one of his best days in a long time. Normally Tyler's LP's are painful and dreaded all day long. Basically, they are trying to slide a needle into his spinal column, avoiding all bones and nerves in there.

With the first LP, they determined that Tyler's back is too muscular (after years of landscaping and sports) to get a good placement in his spinal column while essentially "blind". Since then, we have actually had LP's done under fluoroscopy. They use x-rays to guide the placement of the needle.

Even with that technology, they seem to find it difficult to get a placement that will allow the spinal fluid to flow out easily. He gets several attempts each time and they end up having to tilt the bed to different angles to get the spinal fluid to flow out.

This Thursday, however, they got the poke perfect on the first attempt and the spinal fluid started to flow without having to help it along.

Added to the great doctor's appointments, Tyler got to enjoy some AMAZING sporting events (with Washington teams dominating) and he had his first vanilla latte in months.

Friday, March 13, 2009

Find Humor Where You Can...

We've seen the ads for the final season of ER, so Tyler decided he wanted to watch it and see all of the original stars coming back. As we were watching the show, we have been amazed by how many of the medications that they mentioned were now familiar to us: Ativan, Reglan, Kayaxelate, etc

While I do wish I was still blissfully ignorant of all things medical, it is interesting to see this drama in the new light. Tyler and I keep laughing at how much more familiar all of this stuff is now!

Wednesday, March 11, 2009

Day 42 - Yes, We Have No Bananas!

Tyler's blood test on Tuesday showed that his potassium level was improving. He dropped from 5.5 (on Monday) to 5.2. That is the upper range of the normal ranges, so they want him to continue with the low potassium diet through his Thursday blood test and clinic. They are also continuing the IV hydration this week to make sure we are flushing any extra junk through his system.

I'm hoping that he will have dropped enough by Thursday that we will be able to eat normal foods again. That may be a large dream, but it's still something I'm hoping for. It will certainly make it much easier to cook a variety of foods at home.

Tuesday, March 10, 2009

Shop for a Cure

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Monday, March 9, 2009

Day 40 - A Tall Drink of Water

Today's test results showed the same concerns with an elevated Potassium level. They have opted to stop the fluconazole and have him take Kayexalate to flush the excess potassium out of his system. We had to take a dose this afternoon and then go in again tomorrow morning for a follow up blood test to see how well it worked. They want to see the potassium level trending down by tomorrow morning.

They also were concerned that Tyler was dehydrated during today's test and ordered some IV hydration for him. He wasn't feeling good over the weekend, so we know that his eating and drinking were a bit down for that reason, but we didn't realize that he was that dehydrated. The doctors say that Tyler needs to drink 80-100 ounces per day, but it seems to me that the doctors still think he is dehydrated at that level.

They have prescribed a liter of IV hydration per day for now. Tyler is a bit disappointed, as this means 4 hours per day hooked up to the IV. At least we can do this from home and don't have to go into the clinic for that long.

I think that, while it is an inconvenience, it will make him feel better and free him up to focus on food more than drink during the next week. Plus, I found it a challenge to feed him things that were low in potassium. The only protein items in the "low" category were eggs and pecans. That doesn't make for very tempting meal options. We did get some suggestions from friends over the weekend and are trying to adjust our menus accordingly, but I still look forward to feeding Tyler beef again! ;)

On the upside, Tyler was feeling a bit better today and was able to eat normally. Andrea made it back over today, so I am headed out to work tomorrow and will miss the blood test. Hopefully we only hear good news when he calls me to tell me how it went.

Saturday, March 7, 2009

Day 38 - Cruel and Unusual Punishment

Tyler had his potassium check on Friday morning and we did not get a call from the nurses, so I expect that the test didn't show an increase. We had to run from SCCA to the University of Washington to make Tyler's lumbar puncture (LP) appointment, so we didn't a chance to wait for the results.

Tyler will be getting 4 LP's spaced about 2 weeks apart. They will be watching for signs of leukemia in the spinal fluid, as well as injecting chemo in to make sure no disease can take hold in there.

This first one was one of the bad tests. Most of the time, they have to poke Tyler multiple times to be able to get a good flow of the spinal fluid. With yesterday's LP they had to poke him 3 times with only some lidocaine to numb the skin. They seem to think no major drugs are necessary, but it's always been painful for Tyler. With all of the hard work he has done as a landscaper and athlete, he has good strong bones to poke through.

Added to that, they didn't allow him to eat for 6 hours before the procedure. He was hungry and weak and feeling nauseous by the time we were are our doctor's appointments. I can't understand why they schedule tests that require fasting for 2pm!? Do you think that would qualify as cruel and unusual punishment? I think that after factoring in the poking into your lower back, the injection of chemo, and the headaches that occur with the change in spinal fluid pressure... We've got a winning case!

Friday, March 6, 2009

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.

Tuesday, March 3, 2009

Day 35 - Just Say NO to Drugs

Just to give you a small window into Tyler's daily life... This is a photo of his pillbox and the drugs scheduled to be taken on Tuesday. Admittedly, this is one his worst days as he has two extra pills on Mondays and Tuesdays. But all the same, Tyler is swallowing pills all day long.

One of the challenges is that he has some pills (the MMF taken to prevent Graft vs Host Disease or GVHD) that he can't take within two ours of anything with calcium or magnesium in it. He has been taking that particular medication three times per day for the last month.

As you can see from our pillbox, our day is highly scheduled by our medicines. We think Tyler may get to stop taking the MMF or cut down on it today, but have to confirm it with the doctors. If he can stop taking it entirely, he will be down 9 pills each day. That's a victory when you are on as many drugs as he is.

Monday, March 2, 2009

Day 34 - The Envelope Please...

We finally got the bone marrow results today when talking to our nurse. But... before I get to that....

Tyler had an ultrasound and his regular labs at SCCA today. They said his liver and other organs looked the same in the ultrasound as the last time they looked at it, so I guess he's doing okay as far as the GVHD goes. I'm not sure exactly why this test was scheduled, but assume it might have something to do with some out of the ordinary liver function tests. They are fiddling with Tyler's medication a bit to get him to be at just the right level for optimal healing.

His labs turned out pretty well today too.

WBC: 2.96 (normal 4.3-10.0)
HCT: 29% (normal 38-50)
PLT: 72 (normal 150-400)

His neutrophil count wasn't in yet when the left the clinic this morning, so I guess we'll have to wait for that. But the other numbers all seem to be holding pretty steady and that's a good sign.

And now... May I have the envelope please...?

In reviewing the bone marrow aspiration from last Wednesday, they determined that Tyler showed NO signs of disease reoccurence. He showed good signs of engraftment and the cells that they collected were 100% from the donor (Thank you, Scott!!). The nurse said that Tyler looks to be doing great for being Day 34.

You can catch us doing the Happy Dance all night long as we celebrate some great news. Thank you so much for the prayers and well-wishes that got us this far. We're so very thankful to have something go right in our battle!