Pre-Transplant Chemo Done

Tyler finished his 5th dose of Fludarabine today and continues to be doing well with the chemo. His throat has thickened a little bit, but any pain he has is manageable so far. I hope that it does not get much worse for him.

Tomorrow morning (at 7am), he gets his TBI at UWMC. They are giving him a very small dose of radiation, so we hope that it will not add much to his side effects. His hair has actually started to grow back in (after about 2 months as a bald man), so I am curious to see if it falls out again or continues to grow.

Transplant -2 and counting...

Miscellaneous Questions and Answers

A friend e-mailed a few questions about Tyler and I thought that others might have the same questions, so I should answer them on the blog.

1. Is Tyler sleeping all the time (like before)?

Tyler is not sleeping full nights yet, but he is sleeping better. He's actually been using a drug called Ativan to help him sleep at night, but gets about 6 hours of sleep in a typical night.

2. What is the status of Tyler’s foot? Has it returned (or worsened) due to recent radiation and chemo treatments?

Tyler's foot continues to be a source of frustration for him. While he can move his toes about an inch upwards, the foot is still extremely sensitive and largely unresponsive. It has not worsened, but we expect it to be a long time before it completely heals. There is also a risk that it might never heal completely. Tyler worries that he will have trouble working if it does not heal, as his job as a groundskeeper requires him to be pretty mobile.

3. Is Tyler reachable via email?

Tyler is not currently reading his e-mails, although he will probably catch up on them someday. If you need to get a message to him, you can e-mail me to pass along your message.

4. Is the radiation risk completely over? Did it “wear off” or something, such that he must no longer be isolated?

As I understand it, your body actually processes and excretes radiation through your urine. So Tyler got a radioactive transfusion Thursday before last, but his body was able to process and excrete the radioactivity over the days that followed. He was released as soon as he was under the safe guidelines for our state. The radioactivity level would continue to drop as his body continued its normal functioning. While we haven't measured him in the last few days, I would guess that he is probably not radioactive anymore.

5. Is TBI a round of intense radiation? I did not realize that he could be an outpatient at this point in the process.

Tyler's TBI tomorrow will be outpatient, which sounds like it is normal for these procedures. Actually, we were also surprised by how much of this is outpatient. According to the radiation oncologist that is handling Tyler's TBI, he is getting the smallest possible dose of TBI. They are only doing this to help suppress his immune system so that it will accept the foreign marrow.

6. Are the doctors already discussing possible complications due to partial match (half-match?) on the donor vs receiver? I did read the CML booklet on this, and it of course acknowledges a wide range of possibilities.

The doctors prefer not to tell us about things like possible complications, although they likely discuss them in their morning rounds (when they discuss each of their active cases). The half-match issue has been my biggest worry throughout this process. It is my opinion that someone wanted Tyler for this study so they never attempted to search for a better match in the world bank. While we pushed and pulled on this issue, we made no headway in getting them to give us additional options for the transplant.

There is however, an upside to using a parental half-match. Typically, you experience less graft versus host disease (GVHD) with a related donor. I'm not sure how things will work since there will likely be an increased risk for GVHD with a mismatched donor and less with a related donor. I'll try to address GVHD more in a future post, as it is a big issue with transplants.

7. Are you able to work a reasonable number of hours? You must be running constantly, exhausted.

My coworkers have my undying thanks for allowing me to be with Tyler throughout this process. I'm not sure how I can ever make it up to them, but their flexibility has made all of this possible. I work as often as I can, often from home or the hospital. We've pared down my responsibilities as much as possible, but I feel guilty not helping out more. I was working 1-3 days per week, but am mostly off now. I only worked 4 hours from home this last week and plan to be off completely this next week as well. I'm the lead on a big project at the end of February, so we'll see how I balance work and home as I get closer to that deadline.

I also owe my thanks to the friends and family members who have helped us to keep up with day to day tasks. Several of Tyler's high school buddies came up and weeded our front yard (since I would have probably pulled out all of the plants without Tyler's guidance) and completed some home maintenance, Debbie (my mom) who helps with grocery shopping and house cleaning, and Andrea (Tyler's mom) who helps get Tyler to appointments so that I can sneak off to work from time to time.

Several others have offered to help, but timing doesn't always work. Even if we haven't been able to take advantage of your kind offers, we certainly appreciate them!

We are both getting tired though and are ready for some time of normalcy. Sadly, I think we have a little bit of time before we get there. If Tyler's side effects are kept to a minimum, we may have some downtime over the next 2-3 weeks while waiting for engraftment. Once the new marrow starts making blood, any side effects that he had should start to diminish.

I hope that answers a few of your questions as well!

Restful Day

We had labs and chemo today at SCCA, but were home by noon. And that included a 2 hour wait for a room for the chemo. It was nice to have such a quick day there and get to spend time at home for the afternoon and evening.

Tyler is getting some mouth and throat soreness from either the chemo or the radiolabeled antibody, but hasn't been too impeded yet. We're mostly just being a little bit more careful about the food that he is eating. If it gets worse, we'll probably have to start up the pain meds again.

Tomorrow is Tyler's final day of chemo, and it is another quick day. Monday will be his Total Body Irradiation (TBI) at UWMC and then a few final appointments at SCCA. We'll have Monday evening and Tuesday morning at home before the transplant. Tyler's dad will check into UWMC very early on Tuesday morning to get his marrow drawn out. The doctors will do some magic to prepare the marrow and then infuse the marrow into Tyler on Tuesday afternoon.

Transplant -3 and counting...

Still Glowing

My darling husband was measured this morning, but he must have still been glowing with radioactivity. His radiation level was down to 12.1 mR/hr, so we are hopeful that he might get to come home tomorrow.

The nuclear medicine specialist tells us that we can't do anything at all to hurry along the process, but I keep hoping that something will work. Tyler and I are both looking forward to spending more time together. We've only spent a few hours per day in each other's company, and we are separated by most of the room to protect me from the radiation.

Tyler's dad (his marrow donor) had an appointment today to bank some of his blood in preparation for the procedures next week.

We hope that Tyler is able to spend tomorrow night at home, as he begins his conditioning chemo on Wednesday. He'll have 5 days of chemo, followed by Total Body Irradiation next Monday, and a transplant next Tuesday. Wow! After months of delays and complications, time is now speeding towards this transplant. We are certainly ready to begin the recovery phase!

Transplant -8 days and counting...

Bubble Boy is Born

Tyler's infusion took place without complications today. It started about 1:30 and ran until just after 7pm. We were able to help him get settled in his room before the infusion started, but once they wheeled in the cart of radioactive materials we had to leave the room.

The picture at left shows Tyler in his room from our chairs on the other side of the hall. Although we have teased Tyler about becoming a bubble boy, you can see that he isn't really in any sort of bubble. He is in a regular hospital room (with another fantastic view) at UW. In order to keep the room radioactivity to a minimum, they have covered every surface that Tyler might touch in the course of his stay. You can kind of see the blue tape along the floor coverings and on his table. People emit radioactivity, but objects do not become radioactive unless they are touched by a radioactive person.

At the end of the infusion, Larry (from Nuclear Medicine) measured Tyler's radioactivity level to determine safe distances for visitors and nurses to stand outside Tyler's room. They measure the amount of radioactivity in milliRoentgens per hour (mR/hr). This is essentially the amount of radioactivity you absorb if you are standing 1 meter away for 1 solid hour. Tyler was emitting 77 mR/hr at the end of his infusion. He'll be isolated at UWMC until his radiation level is down to 7mR/hr, which we expect will be early next week.

With luck, the radiation and the antibody that they gave him today will search and destroy any leukemia in his body. Then we move on to the next step of this process...

Transplant -12 days and counting

T-y-l-e-r M-o-u-s-e

Tyler had his final blood test today and proved that he was not a mouse (or something like that)... Actually, Tyler had a HAMA blood test today to check for "human anti-mouse antibodies". The radioactive antibody that they will be giving Tyler actually comes from the white blood cells of a mouse, so they need to make sure that his body has not formed any antibodies (HAMA) against his potential treatment.

Tomorrow he gets his therapeutic dose. It will be another 5 hour infusion, following which Tyler will stay in the isolation room at UWMC for several days as his body processes the radiation it has received. We don't know exactly how long Tyler will have to stay there, as it will depend on how fast his body processes and eliminates the internal radiation. We expect him to be in the hospital at least through the weekend.

Conditioning Treatments

This week's schedule is an important one for us. Tyler has some standard appointments early in the week (we'll see our nurse and nutritionist and get some blood drawn), but the big stuff starts on Thursday. That is the day that he becomes the Bubble Boy. He's scheduled to receive his therapeutic dose of the radiolabeled antibody at UW, as he begins his isolation.

The therapeutic dose is the amount of medicine needed to treat the disease, so this is the first (and most important) step of Tyler's transplant conditioning. The goal of the conditioning is to prepare Tyler's body to accept the new marrow. This particular treatment injects Tyler with radioactive antibodies that seek out the cancerous cells and kill them off from the inside. As we saw in the Gamma scans, the radiation from the test dose moved into Tyler's marrow, his spleen, and his liver. These are all blood heavy areas of the body, so you can imagine how the full dose will be attacking the cancerous cells in his blood to kill the disease.

Tyler will be measured for the amount of radiation that he is emitting and we will be told how close we can get to him. He will be emitting gamma rays, so there is danger if we get to close to him. For that reason, the nursing staff will limit their visits to him.

In addition, anything that Tyler touches will become radioactive. So, anything that goes into the room with him will stay there with him for the entire time. Any food that he orders and doesn't eat will stay there with him for the entire time. Ideally, we'll throw away most of what goes into the room with him, but for the stuff that we want back... The UW will monitor it for radioactivity and return it to us at a later date, usually about 90 days later.

We plan to have Tyler take a computer in, so that he can read e-mails if he is feeling well enough. Other than that, he'll be spending a quiet weekend at UWMC. Our hope is that the side effects will be kept as small as possible, although we are worried about a recurrence of the mucositis.

Day -16 until transplant

The Start of it All

We finally tracked down the LP results this morning and are THRILLED to report that Tyler's spinal fluid continues to be clear of any leukemia. Feel free to join us in our little happy dance at that news.

We reported to UWMC this morning at 8am to get the test dose of the radiolabeled antibody. The doctors will use the gamma scans and bone marrow tests this week to calculate the most effective dose to give Tyler when he gets his therapeutic (real) dose of next week.

In the picture on the left, you can see Tyler in the middle of the 5 1/2 hour infusion of the test dose. The lead box in the lower left contains a syringe with the radiolabeled antibody in it. On the right, Tyler is also getting lots and lots of saline to help his body process all of the radiation through without causing more damage than necessary.

Some of the premedications that they gave to him caused him to be pretty sleepy, so it's been a fairly quiet day for us. Neither one of us slept well last night, so I was pretty thankful to see that Tyler has two beds in today's room. The nurse was kind enough to let me use the 2nd bed and I took a nap this morning too. Now I'm a little less like the Wicked Witch of the West and Tyler is starting to remember why he married me.

We have another gamma scan tonight and then will head home and try to sleep it all off. They say that Tyler will likely feel a little achy and sore tonight and tomorrow, so it is important for him to rest as much as possible.

While we know there are big steps ahead for us, we are thrilled to finally be taking ANY steps towards his bone marrow transplant. Provided everything goes well this week, our next big thing will be next Thursday. Tyler is scheduled to get his therapeutic dose that day and begin his stint as Bubble Boy, the radioactive superhero of the University of Washington.

Day -21 and counting...

Iodine Drops

We didn't hear anything today about the status of Tyler's lumbar puncture, so I can only assume that no news is good news. We go to the UWMC for the Test Dose tomorrow, starting at 8am.

In preparation for the radioactive antibody he will be infused with, Tyler has started taking Iodine drops each day. Apparently, the Thyroid is a magnet for any radiation the body receives and the goal is to "fill up" Tyler's thyroid with iodine before the radiation starts, so it will not be able to absorb any of the radioactivity his body will get.

The thyroid gland is a butterfly-shaped gland in your throat. The thyroid gland uses iodine from food to make two thyroid hormones. The thyroid gland stores these thyroid hormones and releases them as they are needed. The hormones regulate the way your body uses energy (your metabolic rate), so too much or too little of the hormone can affect people's behaviors.

The Throat Issue

I was talking to a friend yesterday and he asked if Tyler would be able to swallow a milkshake or similar item. This has actually been a frequent suggestion from friends and loved ones, so I thought I should address it. If Tyler could swallow something of a milkshake quality, we could keep him adequately fed at home. Even before his throat pain, I was the queen of smoothies and I've only gotten better at making nutritious (and calorie filled) smoothies.

The trouble with that is that Tyler is not eating or drinking ANYTHING. Anytime he swallows something, even his own saliva, he has a sharp pain in his throat. He rates his non-swallowing pain as a 3 (on a scale of 1 to 10). When he swallows, the pain typically jumps up to the 5 to 7 range. Consequently he stopped swallowing anything, except the few medicines that he has to get down, at the end of October. Think of how many times per day you swallow the saliva that has formed in your mouth. Tyler spits it out, rather than suffer through the pain of swallowing.

The few times he has attempted to swallow medications or the chicken broth he tried yesterday, he loads up on the pain medication and still suffers as he swallows. Nothing completely removes the ouch.

An added complication is that, with the exception of the week between radiation and the start of the chemo where he was starting to feel better, Tyler has not eaten anything in about a month and a half. He had some soup and canned peaches and ice cream during that one week where he was starting to eat, but that isn't much for your stomach to process. So, in addition to the throat pain, he has to deal with the fact that his stomach is likely to rebel against anything he eats because it isn't used to receiving input.

It's a tough process and very discouraging for him. We continue to hope that his neutrophil count will pick up and he will start to feel better. We've got big plans for the next few weeks -- a Christmas Dinner with friends this week and a wedding for a family member next week -- that we would like to participate in if we can get out of the hospital and start building up strength again.

That's just a little peek into the side effects that Tyler faces and the reason that we are still stuck at UWMC.

Waiting Game

No new updates to Tyler's health. We are just waiting for his throat to repair so that he can get back to eating and drinking. His white blood count was still at 0 this morning, so he doesn't have enough neutrophils to repair the damage done during chemo and radiation. Our next scheduled "appointment" is on Wednesday December 10th (or so) when Tyler will get another bone marrow aspiration and another lumbar puncture.

In the meantime, Tyler is trying to limit his speaking (we're learning sign language) and keeping his mouth and throat moist. We'll post more when we know more.

Just Let Me Sleep...

Tyler had his final dose (for the time being) of Cytarabine this morning. Thankfully, side effects are still pretty minimal so far. His throat is starting to get a little bit sore, but we haven't hit major pain yet. Probably the most difficult part of this weekend was just getting enough sleep. Tyler's having trouble finding a comfortable position in the hospital bed. I'll be bringing some of the pillows from home back with me, since he has broken all of those in appropriately by now.

What is most frustrating for me is that he just drifts off to sleep and someone will come in and need something from him, or the IV will start beeping an alarm at us. I wish we could just let him sleep for an hour or two, once he finally dozes off, especially after he had 2 bad nights in a row. Usually the afternoons are quieter than the mornings, so he is trying to get a brief nap in now.

Phew! His cell phone just rang, so I was diving across the room to hit the silence key. I got lucky and got to it after only 2 rings. It turns out that the UWMC was calling us to make an appointment for a test. I suggested that they contact Tyler's nursing staff since he is still inpatient. That seems easiest for now.

Now the IV has started beeping. I think it just isn't our day to find quiet time.

Anyways... Dr O'Meara had good news for us this morning. Although today's blood test results weren't yet in, yesterday's results showed that the blast count in Tyler's blood were down to less than 1%. That's great news and shows that the first 4 doses of chemo have done their job. We hope that last night's results show him down to 0% in the blood. They will test his marrow and spinal fluid next week, for the more sensitive tests. Hopefully they will also show the same kind of improvement as the blood tests.

The side effects are expected to worsen (if they are going to) over the next week, so I suspect that will be the worst part of the month for Tyler. I pray that they will be far easier than what he dealt with for the radiation.

My "son" is staying with Tyler tonight, so I'm headed home to try to catch up on sleep myself.

A Day of Tests

After several weeks of agonizing each time he swallows his pills, Tyler has finally been scheduled for a GI Consult this afternoon. They will put a scope down his throat and look for ulcers or infections along his esophagus. This gives us such peace of mind, as the pill swallowing has lingered as the most painful thing left over from radiation. The doctors really feel that Ty's throat should have improved by now.

He's also scheduled for a lumbar puncture with chemo injection this morning, so we'll start that part of the treatment at least. Yesterday's appointment with the doctors sounded like they wanted to wait until Tyler's throat has cleared up a little bit before starting with the rest of his chemo therapy, but we should get a better idea of that today.

His left foot has started tingling itself awake again, so we are excited that the numbness seems to be receding and that he is able to move his big toe a little bit again. Tyler is so good about doing his exercises that he is bound to see continued improvement as the nerves heal themselves.

Tyler got 2 bags of platelets in the wee hours of the morning and is getting one more bag before his LP today. Then, after lunch, we'll see the GI doctors and get 2 units of Red Blood Cells. It will be a busy day for us with all of the appointments to juggle, but I'm just so relieved they've squeezed him in for the throat scope.

Waiting For the Weekend

Thankfully, Tyler has only one scheduled radiation treatment left. They tried to schedule a Monday appointment for him and he told them he was done with the whole thing after Friday. I don't blame him... The toxicity has continued to build and he is feeling poorly again today.

One of the side effects that I didn't expect are these huge bouts of hiccups. They are getting more frequent and we can't find anything that seems to trigger them. But... he gets violent hiccups for a few minutes at a time throughout the days now. The nurses and doctors said that it is due to an irritation of the diaphram and is likely a result of the radiation treatments.

Tyler met with the radiation oncology doctor today and she says that his symptoms should begin to improve within the few days after treatment stops. I'm counting down the minutes until he starts to feel better. This is by no means the end of the crappy days, but we're ready for a break for now.

Tyler goes in for a blood test tomorrow and we are kind of expecting that he may need a transfusion. His platelets had dropped from 58 to 38 over the last weekend, so he might continue to drop a little bit lower. He must be over 50 platelets to get his lumbar puncture on Monday, so we are thinking he'll get a transfusion by Monday at the latest. If he dropped below 20, then they will likely give him a transfusion tomorrow too. The biggest risk of low platelets is the risk of bleeding. Platelets are the part of your blood that contribute to clotting and you have to be extra careful not to get hurt if your platelets are low.

The last day of radiation tomorrow, so we are counting the hours. 15 hours from now..., Tyler should be done with this phase!

10 down 2 to go?

Today I completed my 10th radiation treatment! We have 2 more this week, and then we get to check my spinal fluid on monday. We should know by tuesday whether or not the radiation was effective in clearing my spinal fluid. If its clear, we can proceed with the transplant with its current schedule. If its not clear we will be doing an additional 6 radiation treatments. Ive been having some difficulty the last day and a half swallowing, and thus getting the proper amount of nourishment into my body. Today has been particularly difficult, but we seem to have found some good pain killer and a mouthrinse that should help me out. If I cant get the right amount in, I will need to have some assistance from an IV at SCCA. Things are much better this afternoon than earlier this morning so I am very hopeful.

All of this really makes me appreciate things I had never really thought of and had taken for granted in my life. Being healthy is truly the most important thing anyone can have or aspire to. I never thought that I would encounter pain swallowing or be afraid to eat or drink, but those things have happened during my radiation regimen. I am fortunate to have some great doctors and nurses whom have been able to spend quality time with me discussing my ill effects. Of course I am also extremely fortunate to have amazing caregivers, and moral support, and prayer from all of you! I would be nowhere without all of you! Whenever I think about the auction, and all the great times Ive had in my life it makes me fight even harder than I thought possible.

I mentioned my schedule earlier...........I will spare the daily details, but the transplant date is currently November 25th.

Please take care all and do everything in your power to stay healthy!

Tyler

75% Complete and Starting to Feel It

We are happy to report that we are 75% done with the radiation treatments, but that Tyler is starting to feel more of the cumulative effects from treatment. His throat has been getting thicker, but today was the first day that it pained him to swallow all day long. He is trying an oral rinse tonight, but I'm not sure that it relieves enough of the pain for him. We'll keep trying tomorrow to find a combination that works. If Tyler tells the nurse that the oral rinse isn't working, they will give him something called "Magic Mouth Wash". Sounds like something that you would find at Disneyland Resort, right? Apparently it is a blend of common numbing agents that will help numb up your throat and mouth.

He is also feeling slightly more fatigue than he was before. We are trying to make sure we get 8+ hours of sleep at night and also Tyler takes a nap as often as he can. They attribute the fatigue to the fact that all of your cells are having to repair themselves after they are damaged by the radiation. Extra calorie intake and extra rest were both prescribed before the treatment even started.

After the 3 treatments this week, Tyler will be getting a lumbar puncture on Monday to test whether or not we were sucessful in clearing his CSF. If so, the transplant is on track for the week of Thanksgiving. I'm nervous for the results of his test, but we should know the outcome by the middle of next week.

Our thanks for the prayers, well wishes, notes of encouragement, and help with tasks. We've had more offers of help than we know what to do with and we appreciate you all so much for being willing to help us out. Let's all pray that Tyler's spinal fluid is free and clear of any sign of leukemia.

Round 5 and He's Hungry!

Tyler said at our doctors' appointments today that, for the first time since the radiation started, he was hungry! It is such a relief that the nausea has faded again and his body has adjusted to the new regimen. He has been eating like crazy today to catch up to what he missed over the last week, so I am feeling much better.

We also got a new transplant schedule today from the folks at SCCA. Tyler's transplant is now scheduled for 11/25, two days before Thanksgiving. Hopefully his lumbar puncture on October 27th will show a leukemia-free CSF and we can proceed with this schedule. If not, we will likely be delayed another 14 days while he suffers through an additional round of chemo.

Assuming the best case scenario, Tyler is now 41.67% done with his radiation treatments. For those of you that wonder about our compulsive need to post numbers every time, rest assured... Tyler is the one that does all of these calculations. I'm always in awe of his mathematical abilities (and I'm a math major from college) because he consistently leaves me in the dust.

Andrea and I got our flu shots today, so that we can take care of Tyler and put him at less risk for illness this fall. I've never had a flu shot before, because I don't really believe the theory that you can accurately predict which strain of illness will be popular 9 months in the future. But... I am a loving wife, so I suffered through this year. The poke actually wasn't that bad and the mail today indicates that my insurance company will reimburse me for that cost.

Tyler can always tell when he is getting low on red blood cells and that proved true again today. He told me yesterday that he expected to need a transfusion and, sure enough, his Hematocrit has dropped to 23%. He's pushed his transfusion off until tomorrow (so he could steal a few hours of golf with Gump today) and will likely be moving around with an extra spring in his step by tomorrow night. The only remaining concern was that he dropped from 27% HCT on Monday to 23% today. That's a steep drop, but not unexplained with the radiation treatments.

His WBC count today was the lowest we have ever seen at .93. The normal range is 4.8-10.0, or something like that. We were happy to see that his blast count was all of the way down at .02%, so I am hopeful that is indicative of positive CSF results in a week and a half.

I think that is most of the exciting news from today. Thanks for the e-mails and comments for the blog! We are touched to hear that people are thinking of us and offering to help. Friends and family make this battle a much easier thing to bear.

Round 4 and a Better Day

Today we reached the 33% done mark in our radiation schedule and we had a MUCH better day! The new medicine seems to be working well and we both ate well today.

An added bonus today was a personalized tour from Amber, a nurse at UW. She is the sister of my cousin Aaron's fiance, Heather. Is that confusing or what? As a brief detour... My heartiest congratulations to the recently engaged couple!!

Anyways... Heather and my aunt Jolyn put us in touch with Amber, who offered to give us a tour of the oncology floors at UW. Amber works on the 7th floor, which we have heard is the best in the hospital, and the floor that contains the isolation rooms where Tyler will become a bubble boy.

She showed us the two rooms that they use for isolation and it was much different than I imagined. Essentially, Tyler's room would be covered in plastic but not closed off from the hallways. They put a lead shield in the doorway to keep the radiation from escaping and visitors have to stay on the far side of the hall, but his room is almost like another hospital room in other ways. He will have a nice view and, most importantly, internet access while stuck in there. I plan to IM the guy, since that will actually be easier contact than yelling at him from across the hallway.

What is really strange about the isolation rooms is that you see duct tape everywhere. Every surface is covered with plastic or other covering and taped in place. As Amber explained it, Tyler's radioactivity will ony last 5-10 days. The inanimate objects in the room that he has direct contact with would stay radioactive for months. For that reason, they try to keep him from directly touching anything. The floor is covered, the toilet seat is covered, the hospital gauges on the wall are covered... Even the remote control for the tv is covered in a plastic bag.

She told us that anything that goes into Tyler's room will need to stay in there until he leaves. So when he orders his meals, he should probably avoid ordering fish (unless he wants to smell the remains in his trash for the next week or two).

Amber was so amazingly friendly and made me feel so much better about the time that Tyler will spend inpatient at UW. She introduced us to several members of the staff there, although I will not remember them after just the brief meeting. It did make me feel really confident listening to her after hearing how knowledgeable she was about Tyler's protocol and similar treatments for other patients.

After the tour, we headed down to the basement for Tyler's 4th radiation treatment, which seemed to go fairly quickly today. I was listening to a book on my MP3 player, so I don't actually know how long it took, but it felt quick today.

Tyler was feeling so good today, that he wanted to stop by his work and say "hi". So we put in a brief appearance with the Children's crew and got to catch up with them. It was great to see them and let Tyler explain what is going on. It was clear to me that he is well liked and well respected with the people stopping to say hi or ask his opinion.

He got a massage in the evening, with hopes that it will make it easier to lie on the radiation table in the correct position. He says the real test of that is tomorrow when he lays down for his next treatment.

We ended the evening with yummy dinner and a game of Nickel Nickel with Gump, Tud, and Andrea. It was such an improvement over the last few days that I am in great spirits tonight!

We're going to try to copy our day and make tomorrow just as smooth!

Round 3 of Radiation

It's hard to see Tyler so affected by this radiation, but he is not feeling himself right now. His stomach is upset and his head hurts and his brain is funny. I hate to see him struggling with this new treatment, while I am profoundly thankful that he hasn't had to deal with all of these side effects the whole time.

He still has a full head of hair, but is very low on energy and nervous about eating. We got a new anti-nausea medicine today, in hopes that this one will work better for Tyler's system and he will feel more like eating. It was a pain to chase down today, but the pharmacist ended up letting me take it with the assumption that the insurance will eventually pay for it. Our case manager seems to think this is the case too, so hopefully the insurance gets resolved tomorrow. Bless the hearts of those who helped me get the medicine today because I was worried about getting something that will make it easier for Tyler to feel comfortable with dinner.

Because of our weird schedule, my eating is down too. I didn't have anything to eat today until noon. Those who work with me day in and day out know that I normally have 2 meals in me by that time (1st and 2nd breakfast). Pray for us that we can get on a more normal eating schedule. We're aiming for 4-6 small meals per day, but we have yet to achieve even 3 meals in a day.

Tyler (my king of numbers) tells me that we are now 25% done with radiation treatments. I'm holding on to that number and hoping the remaining 8 treatments pass in the blink of an eye for us. We're napping in the afternoons and taking it easy until he is feeling better.

Much love to all of you and many thanks for the prayers and good thoughts sent our way.

Round 2

Tyler had his second dose of radiation today, but also started to experience some of the side effects. He felt a little bit "off" yesterday and took a 2 hour nap in the afternoon, but was able to have some dinner. Today, Ty was a little more nauseous but took an anti-nausea pill and did okay with that.

We are worried about the effects of constant radiation, but will fight this battle together. They tell us that the anti-nausea medications are really good these days, so we'll probably use that to our benefit.

We have Sunday off from treatment, so we plan to lay low and watch football all day long. Then we are back to the radiation department Monday through Friday for additional treatments.