Doane Family Blog

4 years ago today

It was four years ago today that life changed drastically for us. And not in a good way. We were in a pretty happy place at the time, having found out a week before that Christa was pregnant with our third child, and just wondering how we'd handle and cope with three small children. But it was four years ago today that Nate was diagnosed with cancer.

Now here we are 4 years later. Nate is having fun in school, is currently practicing for his part in the school play, he's taking electric guitar lessons and is just signed up for his third season of little league. He has become an avid reader, a big sports fan, a video game addict, and a pal to his brother and sister. I know I'm so overdue to post pictures and updates. But life has been good.

Here is my journal entry for January 22nd, 2004. And here is my message announcing our bad news, that I sent to family and friends, that night 4 years ago.

We're so thankful for how well Nate was done. And we're so proud of our family, and how well we've pulled through the whole ordeal. And we're happy that cancer is no longer the first thing we think of every day. 18 months off treatment. And counting...

- Greg

1 year off treatment and all is well

I wanted to mention that Nate had his 1 year off treatment anniversary last week. And Tuesday he had his last LP (lumbar puncture) to check for cancer cells in his spinal fluid. The results were clear, so that is very good news. Unless something comes up, he won't have any more of those. Also, his checkups and blood work now moves out to every other month. We saw his friend Catherine at the hospital. She was having a procedure the same day, for her end-of-treatment LP & BMA. We got to have lunch with her and her family after recovery. We're so happy for Catherine! And, now she gets to have ice cream before bedtime, since she's no longer taking her chemo (6MP was the troublemaker there). Funny how the little things matter so much.

We've had some flu come through the house. Becca started running a fever last weekend, and it looks like it's finally letting up. Oh, of course, Nate started running a fever late Tuesday, the same day he had his procedure. So... per discharge instructions, we put a call into the hospital. His counts were good, so they said unless he exhibits other signs that it could be an infection from the procedure, let's proceed like he caught the bug from his sister. He was sniffly on Wednesday, so he most likely just caught the same thing she has. And now Christa has some sniffles.

Last weekend was our 13th wedding anniversary. Christa and I managed to sneak off for a bit to San Francisco. Nana & Papa watched the kids (including Becca with her fever), and we got to stay over in the city. Saturday night we went to a cocktail party at the Asian Art Museum with some coworkers, smoozing with other game execs and VCs. It was to celebrate the Tezuka exhibit (here we are with Astro Boy). Kind of fun. Just being out was worth a lot. We came home Sunday afternoon, and we can't thank my parents enough for their help, especially with the long night they had with the kids.

On a sad note, I'm going to point you to a story about a boy we met at Give Kids The World during Nate's Make-A-Wish trip last December. His name is Dana Gauthier, and unfortunately he lost his battle with brain cancer last weekend. Christa had worked with his mom, Cathy, at LSI Logic before Nate was born. It just so happened that we ran into them at GKTW in Florida, while Dana was on his MAW trip. Our hearts are with the Gauthier family.

So... off to bed now. I have to get my rest and keep from getting sick.

- Greg

Time flies when you're busy!

I've added a bunch of photos to the site... Check out the monthly albums under 2007. As usual, I need to beg forgiveness for not updating. I put a buch of photos up, so hopefully you'll enjoy those.

So many things have happened since last update... a couple of birthdays (Christa and I), Nate's school play, Little League, Easter, a visit from Grandpa Neal, a quick trip away for Christa, school ended, doctors visits, selling plums, a job change, swim lessons, and so much more. I'm writing this from my feeble memory, so hopefully I haven't forgotten too much.

Nate was in the school play, he was an elf. He seems to enjoy being part of the plays. Christa helped out again, working in the green room. As usual, the play was a huge, spectacular production. Two complete casts (of scores of children), magnificent stage sets, superb performances and singing by the kids. It's a joy to see. Along with the play, Little League started and Nate had a great coach and team, and really enjoyed himself this season. Last year between the rain and weeks of time in the hospital, he sure didn't play much t-ball. He was in farm this year and enjoyed it. He's a lot faster now, he learned a lot about hitting (no tees in this league), and sure seemed to enjoy it. He even did quite a bit of practicing at home, wanting to get better. It's interesting to see him develop more on the athletic side.

I changed jobs in March, leaving Yahoo and going to a little startup called Twofish, Inc. My friend Lee Crawford founded the company. We're in the games industry, which is a first for me. However, I'm leading engineering developing the platform to support community, commerce, etc. for MMO games, and I have a lot of experience building platforms.. It's been a lot of fun (I sure missed the small company environment), but it's been tough building a team. The software industry is tight in the valley, with the likes of Google and lots of startups fighting for the same people. If you're a server-side Java developer, or a hot-shot web developer, give me a shout. I might be able to use your help. Check out the jobs here. We're still in stealth mode, but feel free to ask me about it.

We went up to Patty's house for Easter, and had all the kids together. We also celebrated her son Brian's birthday. I put a few pics in the album from the trip. We had lots of fun. The kids even went swimming in the much too cold pool. They all enjoyed the egg hunt. Good times with the cousins. It sure is nice to be close enough that we can get together on a regular basis.

Christa took a quick trip to Minneapolis in May, for a girls weekend with her cousin Amy. Amy lives near there, so the two of them had a nice weekend together without their kids. There's a couple photos in the album from the trip. I think they really enjoyed the time together, and the break from motherhood.

There was a sad turn of affairs for the little boy Lance I mentioned last summer in this entry. I attended his funeral (it was the weekend Christa was in MN) and it reminds me how far we are from the 100% cure we hope for in kids with cancer. The service was a celebration of his life, but the image of the tiny coffin still haunts me. Childhood cancer is the leading disease cause of death for kids in the US. Lance had relapsed last summer, had a bone marrow transplant, and had been doing really well. Apparently he took a very unexpected turn for the worse. It's truly unfair for a beautiful little 3 year old. Unfair.

Christa's Dad came and joined us for a week, and and got to spend a lot of good time with the kids. We all went up to Tahoe, and spent a day at the Renaissance fair up there. The kids had a good time and we even managed to go check out the lake while we were there. Only downside was I managed to tweak my back, and so that was annoying.

June has had a lot of activity, the end of the school year being a busy time. Christa has been very busy with all of that. She's going to be the classroom coordinator for Nate's class next year, so that will add to her workload. If anyone can handle it, it's Christa. Right after school was out, the kids went up to Folsom and stayed with Grandma Madie and Grandpa Bob. While the kids were gone, for Christa's birthday, I took her to the Gwen Stefani concert with her friend Anna and husband Dave. Everyone had a great time. I'll have to put up the picture from there. Lots of fun.

We headed to Nana and Papa's house for the 4th of July with the usual time in the sun at the lake and lots of kids playing in the water & kayaking. As usual, lots of food and hanging out. The fireworks were great but apparently not captivating enough to keep Andrew awake. He was wiped from swimming, and not really liking the loud explosions of the fireworks. I had to lug him up the hill to the car which is getting to be quite the chore with my moose of a four year old. Pretty soon he needs to start carrying me.

Last thing to tell about here is that Christa headed to Illinois with the kids to visit her Grandma B. She'll get home in a couple of days, so it's been quiet around the house here. I've been keeping busy working and doing a few minor household chores. She is going to really need a break when she get's back. Good thing it's our anniversary and we're sneaking away for a quick overnighter to San Francisco. Thanks in advance to Nana & Papa.

We're within a week of Nate's 1 year anniversary of completing his treatment for leukemia. Our life has resumed a much more normal pattern. And boy is it busy. A week from now Nate will have what we hope to be his last ever spinal tap. It's a diagnostic test to check one last time for leukemia cells in his spinal fluid. He has been doing monthly bloodwork to check also. The bloodwork will continue, but I desperately hope we're done with these. Last month we thought we'd be doing it early. Nate had been having headaches, and that can be a bad sign. So the spinal was scheduled, but the headaches seemed to go away before we got to the procedure, and so it was rescheduled to coincide with his 1 year mark. Let's keep our fingers crossed. Oh, and Nate's friend Catherine from school is about to reach her end of treatment point. Her 2.5 years of chemo are done. We're so excited for her and her family. And, on a final, yet still cancer related note, I was contacted by a family in LA who have a little boy named Nathan that is 6 months into treatent for ALL. The mom had found my journal here, and had been reading through it. The little boy has the same TEL/AML1 genetic marker that my Nate did. And, apparently, little Nathan has had a very similar hunger for sushi like my Nate did (remember Nate here?). Strange coincidence. They sound like a very nice family, maybe we'll be able to meet them in person some time. Their little boy is on a 3.5 year chemo treatment plan (the protocols have changed since we started), and is about 6 months in. We wish them all the best in their long, long journey. I love to point to my little hero, as he represents so much hope.

It's late, good night. Best wishes to all.

- Greg

Trip to the snow

We took a trip to the Sierra's for a few days at the end of February, and had a nice time. We were snowed upon, which made for some nice power to play in. We rented a nice little cabin in Strawberry, up by Dodge Ridge. Took the boys for ski lessons, but that was a bust. Too crowded (they overbooked the classes), had to wait until later in the day because the morning classes were full. In general a bust.

We did some sledding on the hill across the street from the cabin. Somebody's backyard, as it was. But, they didn't seem to be around and we made a nice little sled run, and had loads of fun.

Lots has been happening around our household... Nate is in the middle of the school play right now. He performed twice last weekend, and had his final performance coming up this weekend. Christa is helping in the green room, and so she's busy with that also.

Other than a few sniffles, we're all doing well. We're enjoying this spring-like weather, for sure.

To help with the pace of updates to the website, I'm writing instructions for Christa. As she rightfully pointed out, rather than have to rely on me to update it, I need to show here the tools I'm using to do this. Should pay off for anyone bothering to check the site.

Take care

- Greg

When you wish upon a star...

We're back from Nate's Make-A-Wish trip! It was incredible. Let me fill you in on the history, however. In November of 2005 Nate met with the Wish folks, and wished for a trip to Disney World at Christmas. Well, they couldn't make it happen for Christmas '05, so tried to talk him into Feb. or April of '06. He was adamant about Christmas, and said "I want to go to Disney World at Christmas. This Christmas, next Christmas, or the Christmas after that". So, Christmas '06 it was planned for.

We left on the 21st, with a big black limo pulling up in the driveway. The limo took us to the airport, where we flew to Orlando by way of Dallas. Once we arrived in Orlanda, a greeter was waiting from Give Kids The World (GKTW). He helped us get to our rental car, and get us on our way as quickly as possible. We drove our rental minivan to the Give Kids the World village. Upon arrival, we checked in inside the House of Hearts. They had stuffed animals (Shamu and Mickey) for the kids, and tshirts for the kids. They gave us some information, and sent brought us to our villa, where we'd be staying. It was late in the evening, and it was great that they had stocked our fridge with milk, juice, etc. Also, there were 5 sandwiches waiting in there for us, since we had missed dinner time.

The villa is a 2 bedroom, 2 batch duplex. There's a small kitchen and a living room. The kids get the master suite, complete with bathroom with jacuzzi tub and large shower. Christa and I got a bedroom with a a small bathroom off the hallway. This is give *kids* the world, after all. I'll post some more pictures from GKTW soon (nice pics of the village). The Give Kids The World provides the stay free of charge, breakfast and dinner daily, free ice cream, all sorts of great little perks. Inside the Castle of Dreams, on the ceiling are thousands and thousands of small shiny stars. Each one has been signed by a child who has stayed at the village. And now, Nate's star has joined the others.

Friday morning (the 22nd) I met for GKTW orientation, where I was given the free tickets to Disney, SeaWorld, Universal, and other information. After that, we headed to Disney World's Magic Kingdom. We drove in, had free parking because of our GKTW parking pass, boarded shuttle in the parking lot, took that to the ferry boat, which took us accross the lake to the park. The scale of things at Disney World is incredible. You have to take mass transportation (ferry or monorail) from the parking lot just to get to the Magic Kingdom park.

We went into the park, rode a few rides, then met up with Grandma Madie and Grandpa Bob. We rode quite a few rides. Nate wore his Make-A-Wish shirt & hat, and had a lanyard with his GKTW button. Between that, and the special access pass I wore around my neck, we had quick access to all the rides. Rides that took fast-pass would take us right in, and those without fast-pass would usually take us through the disabled access or the exit. It sure beat standing in line. Sometimes I would feel a bit guilty about it, but I guess it's just karma earned for waiting in the hospital for innumerable hours over a couple of years.

We spent all day Friday at the park, watched the fireworks, then headed over to Bob & Madie's hotel for dinner. Actually, they all went there, I went to find the car (at which point it started to rain heavily. I met back up with them in the Mickey restaurant at their hotel. We headed home a little later with a bunch of very tired out kids.

Saturday we did more of the same... we met Bob & Madie at their hotel, walked over to the Magic Kingdom, rode a couple rides, and watched the Christmas parade. We then headed over to Epcot Center (via monorail) and rode a few rides there. Late afternoon, early evening we started checking out the different "countries" as part of the Epcot park, but then started to run out of steam. We parted ways with Madie & Bob, and headed to back to Magic Kingdom so that we could experience the electric parade (or whatever it's called now). That was fun. We also rode Pirates of the Carribean again (which the boys loved, Becca not so much). After that we headed back to get our car at Madie's hotel, and took our gaggle of very tired kids home.

Sunday we went straight to Disney's Animal Kingdom park, and met Bob and Madie there. We wandered around there all day, and in the afternoon Bob and Madie took off to meet up with Madie's brother Don who came into town. We finished out the day at Animal Kingdom, and headed over to Bob & Madie's hotel about dusk. The kids wolfed down a few chicken nuggets (dinner of champions, for sure) at their hotel room, and we headed back to Give Kids the World to finish out our Christmas Eve. This included visiting Mr. and Mrs. Claus in the Castle of Dreams (who had presents for all the kids), and ice cream at the ice cream parlor. After a baths we got the kids to bed so that Santa could visit that night.

Monday morning the kids woke up bright and early (Nate led the charge and happily woke up his brother and sister) to discover that Santa had found us all the way in Florida. After opening presents, we headed up to the theatre, where Mickey Mouse, Pluto and Mary Poppins were visiting the kids. We had our picture taken in the theater with the characters. The kids played with their new toys for a while, and then we met up with Bob & Madie, Martha (Madie's sister) and her husband, and Don (Madie's brother) for lunch. We went to a nice seafood restaurant at Downtown Disney, and had a nice meal (far better than the park fare). We had planned to stay and do some shopping there for souvenirs, but it started pouring rain, torrential almost. So, we loaded up the kids and headed back to GKTW. We had planned to swim that day at the village, but the pools were closed because of the rain and lightning. We still had a good time, and Bob and Madie joined us later in the day for dinner at the village. This was our last night at Give Kids the World, and we were making the best of it. It was nice to have a sort of "down day", enjoying the village.

Tuesday morning we packed up and headed out of GKTW. We decided to go to SeaWorld, and check out the marine life and shows. It was much cooler now, and threatened to rain a few times. We watched the dolphin show and whale show, went through the sharks exhibit, and tried to feed or touch a dolphin. We were too late for the feeding, and the dolphins were tired of people by then, so didn't get to touch them. We headed out just after dark, and drove to Cocoa Beach, on the Atlantic side of Florida, to stay at our hotel on the beach. We got there in the evening, grabbed some sandwiches for dinner, and hung out.

Wednesday morning we ate bagels and cereal at the hotel, which was an old-school single-story job, right on the beach. We spent the day running down to the beach, building sand castles, etc. It was pretty cool, with a brisk wind, so we didn't end up swimming. I shipped a couple of packages home that afternoon, since we had sooo many toys, etc from Christmas and our trip. We had a nice dinner at a local restaurant, and spent some time packing up our stuff that evening. This was to be our last night in Florida.

Thursday morning we headed out early, stopped by the Starbuck's in Cocoa Beach (there is a serious dearth of espresso in Florida), and drove to Orlando to catch our flight home. Many hours later we had traversed an entire continent and arrived at SJ airport. There, our driver picked us up (this whole chauffer limo thing rocks), and we rode home in another stretch limo (Andrew called it the "big fancy car"). About 5pm we arrived home, hungry and tired, having finished our big trip.

The Christmas lights were on, our house was warm, and there was a large pile of packages inside that had arrived while we were gone. Thanks to Pat & Larry for turning on the heat and lights and putting the boxes inside each day! I ran to get spaghetti & meat balls, we ate dinner, and had our third or fourth Christmas for this year.

This was the blow-by-blow of what happened... we'll post some more highlights from the trip. I wanted to get this up here, along with the first stab as posting photos. I hope you all enjoy. Merry Christmas, and have a Happy New Year!

- Greg

PS - I realize it's been 3 months since I updated the site. I'll try to do better.

No' Mo' Chemo Party Pics...

Ok, I put up some pictures from the No Mo' Chemo Party. There are a lot more for me to sift through and publish. The pictures of Nate seeing his trophy for the first time are great. Click the picture to see the album.

We've been busy lately, Christa and I are working on the school directory for Nate's school. There's about 280 families in the school and it's quite a bit of work. We spent Labor Day weekend working in the evenings to get things going. Luckily, Michelle, the former directory person, was very very organized, and we were able to pick up most of what she did very easily. We haven't done the page layout portion yet, so that might get tricky, but we'll be working on that soon. Updates for the info should start trickling back in soon from the families, so lots of data entry to come.

Andrew and Becca started preschool... Becca is in Teacher Anna's class, for the 2 year olds, and Andrew is in Teacher Nancy's class for the 3's. They're loving it.

Currently Nate and I are at $825 of donations towards our goal of $2000. We only have one month left to reach our goal. Please help the cause, support research for cures for blood cancers, and make a difference in the lives of families devestated by leukemia, lymphoma and other blood cancers. http://www.active.com/donate/ltnSanJo/MyHeroNate

Good night!

- Greg

No' Mo' Chemo Party

Saturday, August 26th we had a party for Nate. It was a big party, at Lakewood Park in Sunnyvale. Probably close to 200 people showed up, with a very large number of them kids. He had friends from Washington Open, from SCPNS and elsewhere. All of his cousins showed up. This was all to celebrate finishing treatment. There was a magician to entertain, and Ben & Jerry's ice cream guys scooping out ice cream. We had frisbees made to give away. It was a grand time. We presented a trophy for completing treatment, and he was beaming. The magician brought him up in front of the audience and definately made him feel special.

We have a lot of photos that I need to go through from the party, and I'll get those up here soon. Also, I'll post our thank you letter that we handed out on Saturday. So much to do...

Yesterday was Nate's first day of school. He's a big 1st grader now. As luck would have it, he had a low fever yesterday morning and wasn't feeling well. So, he missed the first day of school. Very dissapointing for us, and a bit for him. Well, he's off to school today, so hopefully all is well.

On a final note, Nate and I are raising money for the Leukemia and Lymphoma Society. They support research and patient care and provide educational services to newly diagnosed patients. We'll be walking in the Light the Night at Burgess Park in Menlo Park, on October 14th. Nate will be there holding his white balloon, which recognizes his survivorship. We'll also be participating in a foosball tournament fundraiser at my work, Yahoo! . We've set a very high goal for fundraising, and we could use your help in getting to our goal. Please see our donation page, and we'd love your financial support, if possible. http://www.active.com/donate/ltnSanJo/MyHeroNate

Thanks,

- Greg

Sad note, camping and more camping.

I'd like to first mention that a friend of ours, a family we've connected with because of cancer, found out their little boy has relapsed. The poor little buddy is just about 2 years old, and it appears will be headed for a bone marrow transplant as soon as he's in remission and a donor match can be found. This is very sad news. They live close by here in Santa Clara, and we'll help them the best we can, but please keep little Lance in your prayers and thoughts.

I took the boys on a quick camping trip 2 weeks ago. We went all the way to Saratoga Springs (about 15 or 20 minutes from home). Nate's friend Zach, and his dad Eric came with us. It was a lot of fun. The campground is a bit cramped, but there's a swimming pool and a little arcade, and they had a big inflatable slide and jumphouse. Those were great, but I think the highlights were throwing rocks into the creek we were next to, and, of course, the campfire. Little (and big) boys like to burn stuff, so that provides lots of entertainment. It's a pretty spot, but next time we'll plan ahead better and reserve a spot at a state campgrounds, like Big Basin, or somewhere. As soon as I get the photos together, I'll post them.

Last weekend was my annual camping trip with some buddies. It was a good time. Francis and I drove up together, and we met Mike, Rich, Keith and Randy up there. The usual fishing, campfires and beer type event. Rich brought his ham radio and made contacts with people across the US. We caught a lot of fish, ate too much and drank too much. All, in all, a good time. Pics are here.

Good night.

- Greg

Camps and visits and hardwood floors.

Nate is off at Camp Okizu this week. 6 days. Without mom or dad. By himself. With lots of other kids that have cancer, or are off treatment. Crazy... 6 years old, and off for a week with strangers. Are we nuts? Probably. Okizu is a beautiful place, where kids with cancer hang out with other kids that just "get it". Bald heads don't get stares. Wheelchairs are fine. Steroid puffy cheeks are normal. Where one minute you're shooting arrows at the archery range, and the next you're getting the bandage on your Hickman changed and the lines flushed. It's a special place, run by special people.

Christa headed to Nana & Papa's last Sunday with all the kids. The, Monday morning she drove up to Berry Creek (near Oroville) to drop Nate off at camp. She said not many kids were there yet (the buses hadn't arrived yet), so he got lots of attention from the counselors. Probably a good thing for the transition. Then Christa went back to Nana & Papa's and has been there all week. Tomorrow morning she'll go get Nate and head home. It's about a 4 hr drive from Camp Okizu to home. She's awesome.

Well, last Sunday after Christa left, Rich came over and helped me move our couches and a big cabinet (thanks Rich!). Then, I ripped up the carpet in the living room and down the hallway, and then cleaned out all the tackstrips and staples. Monday a guy showed up and started the work of sanding, repairing, and then refinishing the hardwood floors. They finished on Wednesday, but I haven't moved much back in, because I was being careful of the floors. Take a look!

Now, I've been slowly working on putting it all back together... the dust is crazy, and gets everywhere. But at least the kids were gone while the fumes from the polyurethane dried.

One more thing... If you're inclined to track my posts via RSS, you're welcome to. Here's the link to the Doane RSS feed

Good night.

- Greg

Nate is officially off treatment. OT. Done. Finished. Cancer free.

How many days left, Nate? That's right. ZERO! You're done!

Nate had a spinal tap and a bone marrow aspiration yesterday. This was end of treatment diagnostic tests, to confirm that he's still in clinical remission. And, it's confirmed. He's still clear of cancer. We're ecstatic. I've been walking around today, telling everyone that "today is a great day".

Here's some numbers:

2.5 years = 30 months = 130 weeks = 910 days = 37% of Nate's life being treated.
2 surgeries
4 bone marrow aspirations
18 lumbar punctures (spinal taps)
Around 200 blood draws, probably 140 of which were from his arm
9 different chemo medications (dexamethasone, methotrexate, cytarabine, vincristine, 6-mercaptopurine, 6-thioguanine, cyclophosphamide, daunorubicin, PEG asparaginase)
dozens and dozens of IV punctures
thousands of pills.
3.5 weeks of overnight hospital stays
ER visits at 4 different hospitals
1 new sibling

Now what? Nate becomes a "normal" kid. We hope to not have cancer be always at the forefront of our lives. But, it's not gone yet. 3 more spinals. Monthly checkups and labs. Friends still being treated. Our efforts to help improve the process for other families. For Nate, eventually it'll be the afterthought. Or the "remember when ..."

Let me leave you tonight with a little photo album, mostly about treatment.

Good night.

- Greg

The last day.

Only 1 day left!!

I'll add more info, later. Honest. All the details about a long day at the hospital followed by a quick trip up to SF to the Giants game, watching them win with a bunch of other Make-A-Wish recipients.

Good night.

- Greg

2 days left, a junkie in the making

Only 2 days left!!

A couple days ago, Nate was saying "I can't wait until Tuesday". I asked why, and he said two things: "the baseball game we're going to, and my procedure.". I asked why he couldn't wait until his procedure. He replied "because I really like the feeling of the gas, the sleepy medicine". There you have it. My 6 year old is an anesthesia junkie.

- Greg

3 days left

- Greg

1 hand, 5 fingers

Nate can now count on 1 hand the number of days of chemo left!

Good night!

- Greg

First day of the last week.

I filled Nate's weekly pillbox with his last 20 chemo pills. How 'bout them apples?

I added a bunch of pictures under the 2006, July category. This includes and the new loft bed in the boy's room, and Becca's new bed. Our baby is out of her crib, and into a big girl (or boy?) bed. I think she might be the next Danica Patrick!

Oh, and I put some pics up from our Giants vs. A's game last month. They're in June - Greg

8 days

The countdown is seriously on. 8 more days.

On another note, I changed the photos section of the website, since I'll be using a new tool to generate my photo albums. It'll be much easier for me to put pictures up, now. Check it out.

- Greg

Two hands, 10 fingers. It's within our grasp.

It now only takes two hands to count the days of chemo left. Before tonight's dose of mercaptopurine, he only has 10 days of chemo left. That means he has completed 900 days of chemo. To put it in perspective, Nate is only 2467 days old.

Of course, the fun isn't over. Next Tuesday Nate will have a spinal tap and a bone marrow aspiration. They'll be checking for cancer cells. If I'm a little blue that morning, it'll surely be from holding my breath. He will continue to do his bloodwork on a monthly basis, and every 4 months will have a spinal to check for relapse. Even when the cancer is over, it's not over.

We were up at Nana and Papa's house for the 4th of July. We had a nice time, the kids did a bunch of swimming in the lake, and all the crazy cousins where there with our crazy kids. We watched fireworks on the 4th, and Christa and I, being a little crazy ourselves, packed the kids in to the car and headed home about 11:30pm. We got home a little before 3am. Gotta say, the kids travelled well and there wasn't much traffic.

Thanks for checking in!

- Greg

"Miracle of my life"

Today Nate finished kindergarten. He graduated. I told him tonight that now he's a first grader. He said "no, I'm a no schooler". That's Nate.

A couple days ago, it was almost bed time, and I asked Nate to come over to the counter to take his chemo. He expressed his frustration at having to take his meds. I told him "well, don't worry, it's not much longer". He said, "yeah it is, it's like 3 more months or something". I smiled at him and told him it was less. He guessed 2 months, and I smiled again, and said less. He seemed pretty happy when he guessed 1 month. I told him well, just a little longer than a month. He replied "that's the miracle of my life."

I thought to myself, "Yes, it very well could be."

- Greg

Toddler Slobber

Since all I ever write about is the trials & tribulations with Nate, I figured I'd offer up something funny from the other day. Christa was at the store with Becca and let her play with her phone. Now, Becca can be quite persistent, and if she's not occupied, she wants to go get into everything in the store. I'm sure Christa locked her keypad so that Becca couldn't make any calls. But, we learned something about toddler slobber. Later, when Christa wanted to make a call, her phone wasn't working. She discovered on the screen that it said "*Car Kit*". Basically, the phone had detected that it was plugged into a car installation kit, and using an external speaker & microphone. Of course, it wasn't really. But it thought it was.

I figured it needed to be reset or something. I searched online, and the first article I found said "I let my baby play with the phone, and they drooled all over the phone, and now it says 'Car Kit'". I laughed and had Christa read it. Hilarious. I guess it's a common problem with these phones, the LG VX3200.

Turns out the problem was the liquid get's into connector, shorts out the contacts (makes an electrical connection), and then the phone thinks it's plugged into the car adapter. There were a range of solutions from resetting the phone to opening it up and drying it with a hairdryer (yeah, I guess a bunch of people end up going for a swim forgetting their phone is in their pocket). Resetting didn't work, hair dryer didn't work, but opening it up and blasting the connectors & circuit board with electronics cleaner seemed to do the trick.

Beware the dangers of Toddler Slobber!

- Greg

We're home.

Labs done yesterday morning showed Nate with an ANC of 110.... not enough to get out, by itself. However, his monocyte count was pretty high, which indicates that he's got a decent chance of fighting infection. And, the trend is for rising counts, so Dr. Twist sent us home. We got out just after 1pm. It was simply awesome. Of course, Nate, being the contrarian he is, didn't want to leave. Because he didn't get a chance to go to the playroom to play video games yet that day. Go figure.

Today Christa, the kids, and Neal (did I mention Christa's dad is in town?) hung out at home mostly. We're going to keep Nate away from people for a few days, get labs done next week, and hopefully his counts will be nice and high then. Of course, that means we'll resume chemo then, also. Ick. But, we're almost done.

Oh yeah, and I finally changed the photo on our homepage here... Christa has been asking me to for, what, like 6 months or something.

Thanks for checking in with us. Good night!

- Greg

Oh where, oh where, have my little neutrophils gone...

Well, yesterday's labs had Nate with a white blood cell count of about 2000, but an ANC of 44. Today his WBC was up some more, but his ANC is like 36. BTW, the difference between 44 and 36 is negligible. So, he's still inpatient. Vicki came back down (she rocks!) again last night, watched the kids today while I went to work. Christa is stuck at LPCH. I went to the hospital after work, Christa came home for a few hours, then headed back up there. Now, I'm home, and will go to work tomorrow.

Christa's Dad comes into town tomorrow from Illinois. We were supposed to go to Tahoe this coming weekend, but at this point I'll be happy to just have Nate home. Debrah and Catherine stopped by today, since Catherine had her pentamidine appointment today. The went to Camp Okizu last weekend, and brought some goodies for Nate. Apparently Okizu got a bunch of swag from Lucas, star wars gear. That was really nice.

So, life is hectic, as usual. We're on our, what, 6th straight night of this hospital stay. Our record is 8 days, set in March. We surely don't want to break that record!

Good night!

- Greg

Camp Lucy

Camp Okizu we did not make. Instead, it's Camp Lucy. As in, Camp Lucille Packard Children's Hospital. Nate's counts on Thursday were low (ANC was 300) and his fever persisted, so admitted we were. It took a few tries to get an IV in. A couple different nurses, including Verna tried but failed. She's had good success in the past. They managed to get Beth from the PACU to come downstairs to clinic and try his IV. She got it in on her second try. So, he's got his IV in the crook of his left arm. It took a couple hours to get the IV in, long enough that Nate's oncologist ordered up his antibiotics to be injected into his thighs to get him started. Luckily they got the IV started at that point, or we would have had 3 shots to his thighs and still would have had to get an IV in.

We headed upstairs to 2N. We passed a large group of very sad people in the hallway outside the PICU. Christa later read the online website about a boy, Nicholas, we met earlier this year. He passed on Thursday. I'm sure it was all of his family and friends. I don't know what else to say.

Vicki came down and watched the kids on Friday so I could go to work. Christa stayed at LPCH with Nate. We've been swapping who sleeps there each night. Tonight will be my night. Luckily Nate has been feeling pretty well, even though his fever persists. We're now at 7 days straight of fevers. It hasn't gone much about 103, and he's had no fever some of the time, but it's not gone. Next labs will be tomorrow, but I doubt his counts will have recovered much. The good news so far is that his liver enzymes are coming down, moving back towards normal. They were high last Sunday.

I have to say Nate is quite the trooper. Getting the IV in sucked, but he's been very brave for all his other blood draws. He's had draws done Sunday, Tuesday, Thursday, Friday, Saturday. Each time his fever would spike back up, they'd do another clean blood draw to start blood cultures looking for bacterial infection. All of that has been negative. The resident the other day said he had a crackling in his right lung and that the chest xray showed it wasn't fully inflated. Christa said that it sounded fine today according to the doctor. We've been tossing the football in the hallway quite a bit, and lots of walking around and heading to the playroom. Hopefully the activity has helped.

This afternoon, Nate's friend Jackson and his dad are visiting Nate. That's very nice of them. I'm sure it'll help break up the tedium of a day in the hospital.

I'll try and update again tomorrow night. Thanks for checking in with us.

- Greg

Wow... 2 months.

It's 2 months since my last entry. Why so long? Maybe because we're busy. Maybe because I'm lazy. Maybe both.

What did the last 2 months bring? A trip to Illinois to see Grandma B, Grandpa Neal, Uncle Larry, and all of Christa's relatives. Trip went well, had a great time, stayed at Grandma's house, she just loved Becca (who was quite the charmer). I've got a ton of pics, need to post them.

How are the kids you ask? Well, Nate broke out with hand/foot/mouth disease (the coxsackie virus) on May 12th, so he stayed home from school. Luckily he didn't have a fever. Christa went to her mom's on the 13th for Mother's Day, stayed over and came home Sunday the 14th. We were supposed to go to Courageous Kids Day at Great America for a fun day for cancer kids, but since Nate had newly broken out, we didn't want to expose any other cancer kids. Sunday night Christa started running a fever with a sore throat. A couple days later Andrew started a fever and sore throat. A few days later Becca started running a fever. And, unfortunately, Sunday the 21st Nate started running a fever.

Of course, Nate's fever meant an ER trip, so off to Stanford we headed. His counts were good enough to send us home, though (ANC was 1200 or something). His fever has persisted since, and he did labs at his clinic visit yesterday, and barely escaped with ANC of 670 or so. He has still had a fever today, and we'll be headed to clinic tomorrow morning for a follow up. I'm just hoping his counts are still high enough to escape the hospital. If he's still febrile and his counts drop below 500, we're gonna be stuck in-patient running IV antibiotics. Oh, and he feels like crap since he's running 102 or 103 fevers, so I really really want those to go away.

Almost forgot to mention... we were planning on heading to Camp Okizu for family camp this weekend, Memorial weekend. Looks like those plans are shot. My kids are all gonna be bummed, since they've had a grand time there before and were really looking forward to it.

Anyone for a big serving of crap sandwich? Good night.

- Greg

Nate is out.

Here it is, Thursday 3/23. And Nate is out. Done. Gonzo. No longer in the big house. His ANC today was 750, so they said "see ya". How about that?

Andrew was happy to have his brother home. We're all happy to be together.... at home!

Good night.

- Greg

We have found Neutro Phil!

Our favorite superhero, Neutro Phil, has returned. And, he came back with 449 of his friends. Nate's ANC is now 450. Awesome. Very, very good. The magic number is 500. The way things currently stand, it is very possible that Nate will get released from the hospital tomorrow. They'll stop the vencomycin, which he's been getting because of the bacterial growth in the blood culture (which they suspect is due to contamination... maybe of the sample).

So, what a difference a couple days make. I gotta run. Christa has been up at the hospital since last night, and I'm gonna swap out with her for tonight.

Thanks for the positive thoughts, prayers, whatever else is making for Nate's recovery now.

- Greg

Sassy punk.

Yesterday we talked to the attending oncologist, and he isn't as concerned with the slow recovery as I had picked up from the other doc. In fact, he said that if Nate's counts keep heading up, even if slowly, then he's not gonna do the bone marrow aspiration on Thursday. One point he made was that since we're treating Nate w/ antibiotics, his body doesn't really have to step up an immune response to fight it. So, maybe his counts would be going up faster if he wasn't on antibiotics. Kind of weird, but that's what we got from it.

Nate's doing pretty good, actually. He's a bit of a punk, very sassy. He's been going to school in the hospital (they have the kindergartners from 9;30 to 11:30), so that keeps him occupied for some good periods of time. Also, he's been in the play room when it's open, and been playing the playstation games in there.

Yesterday I came up to the hospital at lunch, and after work. Christa went home for a few hours last evening, and then came back. Nate was asleep, so I actually got to sit and talk with her for like a half hour. I miss that. :-)

Thanks for checking our site.

- Greg

Litte bits of information.

Little bits of information can make such a difference. Especially if the parent's of the sick kid are left out.

It's Monday night, what has happened. Nate is still inpatient. Friday night I stayed with Nate at the hospital. He was still running fevers. His IV antibiotics (cephtaz) continued every 8 hours. Saturday afternoon I snuck home for a while (Christa was there). Christa was staying Saturday night, but then she became sick. So, at 2:30am I headed up to the hospital and switched out with Christa. If we're sick, we can't be around Nate since he's severely neutropenic. Sunday morning at 3:30am or so, Nate was running a 102.4 fever... this called for yet another blood draw for a culture. At 5:30 am, he had a 100.3 fever. When he woke up at 8:30am, he had no fever. He was feeling good, etc. I was starting to get hopeful. His counts were now ANC of 100, but not rising very quickly.

About 2pm, the resident doctor said that LPCH had a bed opening up and that they wanted to transfer us up there. I was thinking that was great, but why now? It seemed Nate was doing well, his fever had dropped, and he was acting quite good. Our room mate seemed like he needed to go up there more than us. But, whatever, they had already arranged for the ambulance for transport.

So, hastily we packed up our belongings (luckily Madie was there to help), and Nate and I took the ambulance ride to LPCH. We got our own room, since he had a history of RSV, they thought they'd keep him separate to start with. The resident, Nancy, came in about 5pm and started to fill me in. She said that because Nate's fevers had persisted for 4 days with IV antibiotics, that they were getting concerned it could be a fungal infection. They wanted to schedule a CT scan for Monday to check sinuses, lungs, etc. Also, his ANC was not rising very fast, so they were worried about that, especially since they had seen 1% blasts in his first blood test from Wednesday.

That's when the little bit of information, such a small piece of information, finally was told to me. Blasts. Blasts. As in "Acute Lymphoblastic Leukemia.". Over 2 years of chemo, and here I'm getting the information that maybe the cancer was back.

She went on to explain that none of the subsequent blood tests showed any blasts, but that's not conclusive. Also, the bone marrow can spit out immature cells (blasts) when it is severely stressed. But, we would schedule for a BMA in a few days, and if his counts don't improve, then we'd be checking his marrow.

To make my evening even better, late last night the nurse mentioned that it sounded like the doctor wanted to do a spinal on Nate on Monday. I asked her to have the doctor come talk to me. If they're going to do a spinal, then there was some new information that I hadn't heard. And damned if I'm not going to get the information right away. For a long couple hours, here I am thinking that the latest blood work showed something bad. And they wanted to check for CNS relapse. Yeah, so about 1am, she was in the room and said "sorry about that information, the spinal was for a different patient". That sick knot in my stomach could relax. A little.

Here we are Monday night. No CT scan was done today since Nate has remained afebrile (without fever). And, one of the multitude of blood cultures run over the last 5 days grew some bacteria. So, a specific antibiotic (need to get the name from Christa) is being administered via IV every 8 hours for the next 7 to 10 days. They mentioned that it is hard on the veins, and he's had the same IV in his hand since Wednesday. It won't last much longer. They're talking about putting in a PICC line (temporary central catheter), which should help. Typically they do that under sedation, but I'm thinking we'll be putting Nate out for it. He doesn't sedate well, at all.

That's what I got for tonight. We're not out of the woods yet. If his ANC doesn't recover soon, we're doing a BMA Thursday, checking for relapse. If his ANC recovers, and his fever stays gone, then we might get sent home with his PICC line in, and we'll administer his antibiotics. We'll have to see.

This is scary, scary stuff. Please keep the good thoughts coming. No fevers. Lots of neutrophils. NO BLASTS! That's what we need. That's what Nate needs.

- Greg

Where, oh where, have those neutrophils gone?

Nate's CBC from today had a WBC of 0.9, with no neutrophils in the differential. Still an ANC of 0. Christa has been up there since this morning, I snuck into work for a while. Came home to a corned beef and cabbage and potatos dinner. I'm heading up in a couple minutes, Christa can come home and sleep here.

Nate got his IV disconnected for a little while this morning, and was able to ride a big wheel around the hospital hallways for a little bit. Tonight, however, Christa said he was pretty tired, and had started to spike a fever ( like 102.7). That means a needle stick for a clean blood draw to run blood cultures.

Madie came last night, she's awesome. She's been watching Becca and AJ today. Nana and Papa showed up tonight, and they're now down visiting with Nate. Papa brought his PS2 for Nate to have for video games in the room. We'll hold out for tomorrow on that, otherwise he'll try and stay up all night.

That's is for now. Thanks for checking in. Send Nate some positive thoughts.

- Greg

Nate is stuck in-patient... fever & neutropenia strikes again.

Nate is stuck in-patient. We went to Valley Medical Center last night, went straight to the pediatric ward skipping the nasty ER. After several hours, we finally got an IV in... (several attempts by different nurses). They started the cephtaz antibiotic. The staff has been very good, and the residents split time between Stanford & Valley, so that's part of the "overflow" agreement they have w/ Stanford.

Nate's CBC from 1am this morning showed that his WBC went up some (from .5 up to .9), however there were no neutrophils showing up in the differential, so he's basically a 0 ANC. Bummer. We'll see how long he stays this time.

Christa came up today w/ Becca & AJ so they could see Nate for a bit. Then I brought the little two home for naps, got cleaned up, we'll have dinner, then we'll head back up again after dinner. Christa will then come home w/ the little ones, and I'll stay over w/ Nate again.

I'll update as I can.

- Greg

Off to the hospital

Well, Nate is neutropenic, and running a fever. Off to an inpatient stay we go. Oh, and with a twist. Stanford doesn't have any beds, so we're going to Valley Medical Center. Lovely. Good bye.

- Greg

Here's our blue monkey!

- Greg

Opening performance!

Tonight is the opening performance of Dr. Doolittle, the school play. Nate is a blue island monkey. He's gonna be in a 3 performances, two this weekend, and one next weekend. It is quite the production, with about 90 students in the cast. Oh, and of course, that's not enough. There's actually two entire student casts, each with about 90 students. Oh, but wait, there's more. There is also an entire adult cast, made up of parents and teachers. Crazy...

Christa is working the "green room". I guess she tells the kids when to go on or something. With tons of kids waiting to go on, I understand it is quite hectic. Especially some of the young ones who don't wait so well.

No monkey pics to post yet!

- Greg

Spinal Day

Today Nate has a spinal. It's not his last spinal. However, it is his last spinal that will put chemo into his cranial spinal fluid. After this one, we stop bathing his brain in methotrexate. There will be a few more spinals, but they'll be just for testing for leukemia cells. After today's procedure, all he'll get is his usual daily and weekly oral chemo medicines. Exciting and scary.

- Greg

AJ's birthday pics are online!

I put up Andrew's birthday pictures. Check them out here .

Well, we've made it through the day without requiring any medical attention... Now let's see if we can make it through the night.

- Greg

Counts are good, getting antibiotics, coming home

Christa took Nate up to Stanford Medical Center ER about 5:30pm. His labwork came back and his neutrophil count is good (ANC of 4000 or so). It's now 9pm, and they're waiting to get a shot of antibiotics. It sounds like this is a one-time deal, and he won't have to take his Augmentin over the next 10 days.

At least they don't have to stay. Maybe we'll even all get healthy sometime.

- Greg

Uggghh. Fever, again? Of course we should be so lucky.

Crap. We've got a reading of 100.8 from Nate. If we get a second reading of greater than 100.3 an hour after the first, that means we're paging the oncologist. And, it usually means an ER trip for blood counts.

- Greg

Ahhh... nap time.

Well, it's Sunday. A week since we got out of the hospital. What's happened in a week? Let's see....

Nate spiked a fever Monday afternoon, I came home from work, hauled him to clinic, they took blood and did labs, and we got sent home since his ANC was 1200. Wednesday Nate has his usual weekly labs. Wednesday afternoon Andrew woke up from nap crying and crying, finally telling Christa that his ear hurt. Wed. night we took him to the "after hours" pediatric clinic, and found out he has an ear infection. The treatment? Give pain meds for a few days, and if he gets over it, then we're good. If he's still hurting, start antibiotics. Nate's blood counts were good, so he resumed his oral chemo starting Thursday night. I started feeling like I was having allergy problems Friday, but it appears that I've caught a cold. I don't feel too bad, but have a runny nose, watery eyes. This morning at 5:30am Nate came into our room complaining of an ear-ache. So, off to the urgent care center he went (when they opened), and he has an ear infection also, so he started antibiotics (he can't "tough it out" because of his suppressed immune system). Andrew has been sneezing and blowing his nose. Probably the cold I have. But, he's in a good mood and acting pretty well, otherwise. Nate ate very little so far today, and when faced with taking his antibiotics, promptly worked himself up and threw up. I guess one more pill was the straw to break that camel's back. Then he laid down and fell asleep.

So, right now Becca & Nate are napping, Christa has Andrew off to the movie store, and I'm trying to get some work stuff done. Oh, and of course, keep our loyal readers up to date.

Thanks for reading, hope you and your family are well.

- Greg

We've busted out!

Nate and I busted out. We headed home this afternoon. Hopefully his fever won't rise above the magic threshold that qualifies for a trip to the hospital. His blood labs this morning showed his ANC at 480, and counting in the monocytes, meant he was on his way up for immune strength. And, he hadn't had much of a fever since last night. Dr. Marina sent us packing. Of course, if he breaks the 100.4F temperature range, then we might end up heading back. Let's keep our fingers crossed. Oh, and Dr. Marina said no school until we get lab results Wednesday, so Thursday at the earliest. Christa is bummed, because they've been talking up the 100th day of school for Wednesday, and Nate will probably be really dissapointed.

Christa took Andrew to the doctor today (since he'd had about 4 days of fever), and they said, yep, he's sick. He has a cold or something. We're guessing it's the same RSV that Nate has.

I thought I'd mention a little bit about why Nate had to be hospitalized. Treating Nate's leukemia means killing white blood cells. This causes his immune system to be suppressed. Two weeks ago he had injections of vincristine and also took dexamethasone for a week. This was in addition to the mercaptopurine he takes daily and the methotrexate he takes weekly. Well, the chemo caused his blood counts to dive. His hemoglobin (measure of red blood cells) dropped below 10.0 for the first time in a year and a half (below 8.0 means it's time for a transfusion). His platelets dropped (but were still in a normal range), and his white blood cells dropped significantly, dropping below 1000. He had an ANC number of 400. Anything below 500 signifies neutropenia, a situation where the body can't fight infection on it's own. So, when he started running a fever, and because he was neutropenic, that meant that IV antibiotics had to be started right away as a precaution. If he happened to have a bacterial infection, it could become systemic and cause sepsis in a rapid period of time (hours). This can be fatal. Over the last 3 days, every time Nate's fever ran above 101.3 or so, the phlobotomist would be called to take a fresh blood sample to run a blood culture (to detect bacterial infection in the blood). Even though he was given IV antibiotics the whole time. So, our poor little buddy has been stuck a bunch of times. The good news was that he only needed a single IV (it worked the whole time), and it only took 2 tries to put that one in.

Keep your fingers crossed or say a prayer for us. Hopefully the whole family can get better quickly. Oh, and thanks to Sabine and family, Kristen and family and Cheryl and family for loaning GameBoy games and other activities for the hospital stay.

- Greg

Nate's in the Big House

Well, we didn't make it. I was hoping we'd make it through the entire treatment without requiring a hospital stay for F&N (Fever & Neutropenia). Well, Thursday morning we got a phone call from Lynn saying that Nate's labs were back and that he was neutropenic. I had already dropped him off at school so he could go on a field trip to the planetarium. Well, as luck would have it, Thurs. afternoon he started running a fever. That's an automatic trip to the hospital for more labwork. And, he was still neutropenic, so he was admitted to start immediate IV antibiotics. He's in room 2331 (2 North, the oncology ward) at Lucille Packard Children's Hospital at Stanford Medical Center. He's got a nice single isolation room, since he tested positive for RSV. Sounds like he's going to be there until tomorrow, at least. We're watching his neutrophil count, but it's not coming up too fast.

Christa and I are taking turns at the hospital (one night each, so far), and we did the switch yesterday in the parking lot. Andrew is sick (he's been running a fever and coughing like mad), probably with the same RSV that Nate has. He's been coughing lots and waking up, too. Becca is still a little sniffly, so maybe they all have the same crud. Who knows.

Some of our very nice friends from Nate's school are letting him borrow Game Boy games, etc. It's hard passing all that time in the hospital.

Take care, I'll update when I can. The silly hospital still doesn't have internet access for us, beyond a single public-access computer!

- Greg

2 Years and Counting

Two years ago today, the doctor told us that Nate has cancer. Two years. Wow. And now, he has a short six months of treatment left. That's only 26 more blood draws at the lab, only 195 more methotrexate pills and only 312 more mercaptopurine pills. And, I believe, only one more spinal tap with methotrexate into his cranial spinal fluid.

Nate is currently in the middle of a steroid pulse... 7 days of dexamethasone. He's managing well. Maybe, because he's older, he can manage his emotions better. Or maybe he tolerates it better. He's definately a little hyped-up and less focused. He's a little obsessed about playing Yi-Gi-Oh cards, and that's getting annoying for us. But, in all, he's doing well. He had an injection of vincristine on Thursday, and will have another on the 26th. He'll finish his steroids then, and I don't believe he'll have to take any more from that point. Thank goodness.

Saturday is Andrew's 3rd birthday. He's getting to be such a big boy. I asked him how old he was gonna be on his birthday. He gave me a sly look and said "twelve or something". He's very funny.

Becca is all over the place. She is learning quickly from her brothers, and does quite a nice job of pouting. My little actress.

Take care, I hope to update with pics from Andrew's bday soon.

- Greg

Christmas Eve

'Twas the night before Christmas, and all through the house, not a creature was stirring, except for my computer mouse... Here it is, Christmas Eve, I'm sitting up waiting for Santa, so what better time to write an update.

We're staying home for Christmas, taking it easy for the holiday. The kids have been very excited, having a hard time containing themselves. Just a few short hours and the whole Christmas carnage will be over. We went a bought some more organizing buckets from Ikea in anticipation of the wave of new toys.

The kids have some sniffles and coughs, and Nate has been nursing a cough since just after Turkey Day. Well, this last week it developed into pneumonia so he's been on antibiotics. Luckily he's on break, so he won't miss any school. I'm hoping that he'll get over the whole thing soon. It's hard, because they've been so full of energy, yet running around outside just starts the coughing fits.

Becca is walking all over the place now. She even walks part way around the block, when you can get her to leave the occasional cat or flower alone. She's a real crackup, and is starting to say quite a few words (although we're probably the only people who understand what she's saying ;-) ).

Last weekend we were up at Nana & Papa's house, along with all my sisters and their families. All 10 grandkids were together, and had a great time, as usual. Several of them were either getting over being sick, or just starting, so we're lucky if all we get out of it was some sniffles. Madie & Boby joined us there, also, so they got to enjoy some of the Doane Family Christmas Choas.

As usual, we're behind on our Christmas cards, so we'll get those "New Year's" cards out soon.

Merry Christmas,

- Greg

Mid November Update

Just thought I'd do a quick update. All is good. Becca is finally starting to do some walking. She gets very silly, though, and starts to laugh, or dive towards us, or whatever. She's crazy, but funny. She is doing great with her sign language. Tonight she was sitting in her high chair, and asking for "more cookies" in sign language. She definately gets her point across.

Andrew took us all to his pre-school last Saturday. We had fun checking out his school, and he showed off his toys. We all participated in circle time, which was a lot of fun. He has a great teacher, whose son Jackson happens to be in Nate's kindergarten class.

And Nate is doing well. Things are on track, he's been well. He has been having trouble lately with his weekly blood draws, and Christa said today it took a long time to get him settled down for it. We're not sure what's going on with that. He's been doing them every week for well over a year with no troubles. Just lately he seems to be afraid of them, and starts stressing out.

The big news here is that Sunday afternoon, the Make-A-Wish people will be hear to meet with Nate, and find out if they can grant his wish. He's not sure, though, what to wish for. He said he's nervous he'll wish for the wrong thing. What a nice problem to have.

Take care,

- Greg

Nate's Birthday Pictures are up.

The birthday pictures are here.

Hi everyone. Nate had a good 6th birthday. We went to the pumpkin patch on his birthday, and picked out the great pumpkin to bring home. It's now time for the rule: You can have it if you can carry it. Nana went with us over to Half Moon Bay. It was a great day on the 8th.

The 9th wasn't so fun. Our next door neighbor died after a fight with cancer. He was much too young, and I think his wife, Mary Beth, and kids (13 and 12 years old) were surprised by how quickly he went. I have known Mary Beth since I was a small child, when she used to babysit for my parents. They are really nice people, and this is tragic.

Nate was sad to find out about Bob dying. This was the first person that he knows that has died of cancer. I think he's getting old enough to start to understand the scope of cancer. Well, about 10:30 that night Nate woke up having a hard time breathing. He was very scared, crying, and working hard to breath. He kept crying out "am I gonna die?". We tried to calm him down, since the stress was only making things worse. We decided to err on the side of caution, so we called 911. Nothing like a big fire truck and ambulance in a small court like ours to get people outside. The paramedics checked him out, and determined his lungs were clear, but that he was having trouble with his airways in his throat. Basically, it was a case of croup.

Since we already had the ambulance here, we decided to go for a ride. After a few hours in the El Camino Hospital ER, a couple of breathing treatments, and a couple shots of dexamethasone to the butt, and Nate was doing much better. We headed home about 2:30am. Our other next door neighbors were so kind to drop off my truck at the hospital so Nate and I could just drive home. That was enough excitement for one day.

Now on to fun stuff.. We had Nate's birthday parties (one with friends, one with family) yesterday, and it went very well. Some of his kindergarten and other friends came, had cake, opened presents, jumped on the trampoline, and just had a great birthday party.

Enough for tonight. Good night and take care.

- Greg

Someone's birthday is coming up

Tomorrow is Nate's 6th birthday. Wish him well.

- Greg

Can you say VZIG ???

Turns out they managed to find a dose at Stanford yesterday. So last night we took Nate to the day hospital, and he had the lovely experience of a shot into each thigh muscle. Two nurses, one shot each, simultaneously. He wasn't happy, but he recovered well.

Let's just hope that does the trick.

- Greg

Crapola....

Yeah... so, here we are, in the middle of Hell Week (this is a steroid week for Nate, and he's exhibited some 'roid rage) and we get a call from a school mate's mom saying that Nate was exposed to chicken pox this weekend. Such an ordinary childhood illness. And yet very seriuos for leukemic kids.

So, after talking to Nate's nurse practitioner, she says to come in right away and they'll administer VZIG injections into each thigh. This is an immune booster for varicella zoster (aka Chiken Pox virus). Then she calls back and says she talked to the pharmacy and they don't have any at Stanford. It takes 24 hours to get it (something about the pharmacy not stocking it anymore). And so, instead, we should just do nothing and keep an eye on Nate. I'm not happy with that answer. If they had it, they would give it to him. So, maybe we should be trying to get it from somewhere else? I'm now waiting for a call back to discuss this more...

- Greg

Yahoo! : Becca turns 1, School Starts and Camp Okizu

Becca is now 1 year old. She had a nice party here at the house, ate lots of cake, and generally was the life of the party. All the cousins were here (and the auntie's and uncles!), along with grandparents. She sure loved that cake. She's been crawling for a while now, and she's gonna walk pretty soon. Her 1 year checkup showed her to be very average in size... right at the 50% mark in height and weight. She's getting big, but she's still our little baby.

Nate started kindergarten last week. He's now in elementary school. What a big guy. He seems to like it so far. He's only missed one day so far, for a scheduled spinal tap w/ chemo. Back in the end of July, beginning of August, he had 2 weeks off chemo because he was neutropenic. His protocol says to drop the Septra, so we have. Now, he get's a once-a-month breathing treatment at the hospital with pentamidine, instead of the Septra. It's kind of nice we don't have to remember to give him the Septra 3 days a week. Hopefully his counts will stay up now. He has less than a year to go!

Andrew started pre-school this last week. He's in a 2's class, and a parent has to work in the classroom. He only goes once a week, but he'll have a great time. His very nice teacher is no stranger, as she has a son in Nate's kindergarten class.

We spent the Labor Day weekend up at Camp Okizu. What a great bunch of people they are. The counselors are all great with the kids. We left Becca w/ Nana and Papa, so we didn't have to worry about her. The boys went canoeing, did some archery, the ropes course, games and lots of carpetball. It was a lot of fun to watch Nate go down the zip line on the ropes course, with no fear. And then we were amazed that Andrew did it also, all by himself. Snug in his harness, he sailed across the creek hanging from the cable. How's that for a 2 year old!

And finally, I've started a new job. I'm the engineering manager for the Yahoo! Avatars team. I know, I know... I sold out. A management job. What a waste of a good engineer, or something like that. If you use instant messenger, please use Yahoo! IM. If you use it, create an avatar. You can go to the Yahoo! Avatars page .

- Greg

Off chemo again, and a great anniversary getaway.

Nate is off chemo for a week, again. He was neutropenic on his blood test Wednesday, so we withhold chemo for the week. That generally gives him time for his neutrophils to recover. This is the second time in a month, a little bit troubling. It could be because he has a virus, could be because his bone marrow is "tired".

Last weekend Christa and I snuck away for our anniversary. It marked 11 years of marriage. Auntie Reggie came with her daughters Missy & Meghan, and they watched our three little ones. Christa and I snuck away to San Francisco for the weekend, and had a great time. Thank you Auntie.

Well, Christa and I are off to donate blood. And we have a party to go to this afternoon.

Take care, all.

- Greg

House O' Sickness

Well, here we are in the middle of summer and everybody here is sick. Let's run through the last few weeks.

Two weeks ago Nate's labs had an ANC reading of 470, indicating neutropenia (a very week immune system). So, he had a week without his oral chemo. This was right before the weekend of the 4th. Rebecca came down with a cold and was feeling bad perfect timing, so we decided that I would take the boys up to Nana & Papa's for the 4th, and if Becca did better, Christa would drive up and join us. And that's what we did. We headed up Saturday evening and the boys were excited to see all of their cousins. Complete pandemonium it was. Christa said Becca was much better on Sunday, so she drove up in the morning and joined us. That was great.

The kids swam in the pool at the clubhouse, they swam in the lake, paddled kayaks around (Papa just bought 2 kayaks), had a great time. We all watched the fireworks on Monday night sitting on the grass down at the park where they shoot the fireworks over the lake. Lots of fun. Tuesday the 5th we headed home. Christa left w/ Becca in the morning, and I took the boys in the afternoon. Of course, by this point, the boys were starting to catch the cold. Andrew was barking, and you could hear it in Nate's voice. After dropping something at my sister's house in Tracy, Andrew then promptly threw up the french fries and milkshake (yeah, I might win Father of the Year award for that stellar meal) all over himself. So, there were are on the side of the freeway, with the wind whipping by us, and I'm trying in vain to clean some of it up. It was nasty.

So, the kids were sick during the week, and we all hung out at home. We had a camping trip planned for the 11th -> 13th with our friends, the Sipes. Jeff and I were gonna take our kids camping, minus the babies. Yeah.... so... Saturday night I woke up with a fever. Felt like crap. All day Sunday I felt bad, running a fever. The boys still had barking coughs, that sort of thing. We called off the trip for sure today, since I'm still running a fever. It's lower now, but I still feel cruddy. I guess I have the flu. In July. That sucks. Oh, and to top it off, Christa was sick last night too, we think it was something she ate. She is much better today, but she was seriously out of commission last night.

When it rains it pours. Take care.

- Greg

Happy Birthday Christa!

Today is my lovely wife's birthday. It's also the day of our summer solstice. Coincidence? I think not.

I've been remiss in updating the website. It's been more than 2 whole months. All sorts of stuff has happened. Lots of birthdays, including Christa's mom's 60th. That was a big party in Folsom. I had a birthday, and even snuck out with some buddies to dinner and drinks. Nate graduated from pre-school. Sort of. He missed the last days, because he and I took a trip to Kodiak, Alaska! The boys started at a new swim center, and they're both doing great. Rebecca is now 9 months old, and such a little cutie. Andrew has just learned to ride the tricycle, and he's having a grand time with that. My little software company was almost acquired by a bigger company, but that fell through. So, now I'm looking for a job, and enjoying the summer so far. And Nate just had a spinal and a week of his steroid.

On the Nate front, he's doing well. Everything is according to plan. On the June 9th, he had a lumbar puncture to inject chemo into his spinal fluid. He also had an injection of vincristine, and started a week of dexamethasone, his nasty steroid. I spent a lot of time giving Nate lots of attention to manage his moods. The steroid makes him crazy. Madie came down and stayed with us, and that was very nice. Thursday, June 16th, Nate finished the steroid, and had another injection of vincristine. His IV went well, he only did a little freaking out. Of course, he was overly sensitive because of the dex, but he did very well. That night, Christa and I snuck out to a late movie while the kids slept and Madie kept watch. Thank you Madie! Nate has now come down off the steroid, and is closer to normal. He's had some issues in the morning, a little vomiting and some headaches, but he's getting better. It's probably all due to the steroid. He perks up after a Zofran and some food, and then does well the rest of the day.

Well, that's it for now. I'm gonna try and clean up the house while Christa has the boys at the park, and Becca is still sleeping here.

- Greg

Happy April

Here were are, April 4th, and it's been almost a month since I wrote an update. Life has not been boring, and the kids have been keeping us busy. In that last month we began spring, there's been one scheduled clinic visit for chemo, one unscheduled trip to the ER, 3 kids with fevers, and Nate is now wandering around toothless (he's now lost both of his top front teeth). Read on for more details.

My last update said Nate was neutropenic. Well, he recovered the following week (a week off chemo helps), and so he had his spinal tap on March 17th for chemo to the cerebral spinal fluid. Funny thing was I ran into someone I know in the recovery room. Her son had just had his tonsils out. Either it's a small world, or we spend too much time at LPCH.

We headed up to Christa's mom's house near Sacramento for Easter weekend. We got there in the evening, the kids were very excited, everything was good. We put them to bed, played a little cards and visited. About 2:30 am Saturday morning, Nate woke up crying saying he didn't feel good. Sure enough, he had a 100.3F temp. So, he slept in bed with me, and Christa went and slept in the other room with Andrew. About 4:30 I took Nate's temp again, and this time it was 102.4F so I woke up the on-call oncologist. On the prior Wednesday, Nate's ANC was about 1000. But, the doctor wanted new labs, so that meant we were heading for an ER. We decided UC Davis Medical Center in Sacramento was a better choice than a local ER, so he was nice enough to look up a phone number for me. By this time, Bob & Madie were awake, as was Christa. So, Bob went with Nate and I to Sacramento. We were quickly brought into a room after seeing the triage nurse, which was good considering the waiting room was packed. They have a nice separate pediatric ER. The nurse had some EMLA for Nate, to prepare him for the stick. We never mentioned he was getting an IV to him, so he was pretty good about the needle stick. After she was already in, and getting blood, he noticed it wasn't normal phlobotomy needle in his arm, so he started to get very concerned, asking "am I going to get an IV?". She told him "honey, you already have one". This was the best IV stick in quite a while. After the usual wait for labs, his ANC came back at about 10,000. So, after conferring with Nate's oncologist, they decided he could go home, and tough it out the old fashioned way, taking Tylenol and lots of fluids and rest.

The rest of Easter went ok, Nate was obviously not quite himself, but the boys enjoyed the egg hunt. Our original plan was to head to my parents' house on Sunday, but decided against it because Nate was sick. No sense getting everyone else sick, and he'd be better off at home. So, we went home Sunday. Monday afternoon Andrew started with a fever and was obviously sick. Thursday Rebecca ended up with the fever and was sick. Luckily they all recovered within a few days, so that was the silver lining. But, it was a long week.

This coming weekend is the blood drive that Christa organized. Drop us a note if you're in the area and want to donate blood on Saturday.

- Greg

A small delay...

Nate's weekly blood labs show that he's neutropenic. This means his body has almost no infection fighting ability, and puts him at risk for catching bugs. It also means that we don't administer his daily 6-mp chemo, or his weekly oral methotrexate pills this week. As long as his blood counts come back up for next week, he'll get his intrathecal methotrexate next Thursday (St. Patty's day). This is the first time that chemo has been held due to low counts for Nate. I know many other children that have had delays on a very frequent basis.

Rebecca had her 6 mo. checkup this week. All is well. She's about 15 lbs, and I don't recall how many inches. She's tracking at about 25% on height and weight. Obviously she's much smaller than the boys. She had some shots, including a flu shot now that she's 6 months old. She's had a low fever since, so maybe she's suffering the effects of the vaccine.

We're enjoying beautiful weather here... hope all is well with you.

- Greg

First teeth

Rebecca has her bottom two teeth breaking through. You can see and feel them now. We're lucky she's actually a very good baby. She seems to have been sleeping less during the day recently, but we're not sure if that is a change in her schedule or just because she was getting teeth. She also has been suffering some cold symptoms, which is not surprising considering Andrew has another cold. Our house has been germ central for the last 2 months. I think we've had continuous colds for that long.

Andrew started a pre-school type class (sort of a Mommy & Me class, where Christa hangs out with him at the class) last week. He missed out today because he's fighting a cold. And, he loves his little sister so much that she's bound to catch whatever he has.

The weather was beautiful this weekend, and I had the pleasure of being invited to "special persons day" at Nate's preschool. Saturday morning we went to school for a while. It was nice. And yesterday I had the 2 boys helping me change the oil in the truck. Lots of fun. Andrew kind of lost interest after bumping his head a few too many times under the truck. Instead they ended up playing in the truck while I did the oil change. Later AJ, Nate and I had a watergun fight in the back yard. It was nice to be outside with some sunny weather.

Nate did fine at getting his blood draw last week for labs. After 2 weeks of bad experiences with IV's, we were a little worried he'd be stressing. But, he just sails through the blood draws. Next week he'll be having a spinal tap for chemo into his spinal fluid on St. Patrick's day. He'll be getting an IV for that, but hopefully he can remain calm for that. The IV can go into the crook of his arm, so that is good. The last couple IV's had to be into hands or feet for the chemo, and so that break from his usual pattern just adds stress. After this spinal, no more procedures until the beginning of June. We'll just keep up his daily and weekly oral chemo.

- Greg

Only 2 doses left this round...

Well, Nate has 12 doses of steroid in him, and 2 left to go. Tonight, and tomorrow morning, and he'll be done with the dexamethasone for the next 16 weeks. I'm back to calling him Senor Loco. He is "amplified". His excitement can be excessive, his neediness is excessive, and his anger can be nasty. Poor Andrew takes a lot of the brunt of that. Of course, he does things just to agitate Nate, so I guess it is expected. Nana & Papa came down on the weekend, and Nana is staying with us through this week. It's a big help. And, she is getting lots of good time with Rebecca, while Christa tries to keep the boys happy. We all got to watch Nate eating half of a tray of shrimp cocktail at 9am the other day, so at least we provide entertainment for our guests.

We got some good news today. Nate will be going to Washington Open, the elementary school in Santa Clara that we were trying to get into. It's a public school, but has more applicants for kindergarten than open spots, so they run a lottery for those openings. At least that clears up one uncertainty for the next year. I guess I'll have to start thinking about how elementary school and leukemia will work together.

- Greg

I forgot to update...

Last week's trip to the ER ended with Nate's ANC being about 5500 (which is nice and high for him), so we got sent home (at almost 4am). His fever was gone by the end of Tuesday, but he had some sniffles and a bit of a cough through the rest of the week. So, all those pokes just to draw a bit of blood. Next time we're going to manage it better, more proactively. If Nate is running a low-grade fever during he day and we don't have current labs, we'll take him in for those labs during the day. That way we'll know his counts, and it's more likely we'll get to stay home and miss the ER.

Christa was fighting some cold symptoms last week, but didn't seem to get hit too hard. Friday night I started coming down with a cold. It hit me hard Saturday and Sunday. I'm feeling somewhat better today, but now Andrew has the drippy nose. Poor little buddy has bright red cheeks from wiping his face across his sleeve. I came up with a product idea. How about tissue sleeves, that go over the forearm on a shirt. The little kids wipe their noses with their sleeve anyways, so this way you put the tissue on there, tear it off when it needs changing, and put on a new one. Product names? How about Green Sleeves? Or Booger Sleeves?

- Greg

Almost 1am and we're not enjoying the ER

It's almost 1am, and we're not enjoying the ER. Nate was running a fever today, not enough to land us in clinic. This evening, his fever went up above the magic 101 point, and that earned us a ticket straight to the ER. Of course, once here, we got to wait a while. We did get our own private room, eventually. However, poor Nate was quite the pin-cushion, as the nurses tried to get an IV into him. Right arm, left hand, left arm, and finally, the winner, the left foot. Poor buddy. At least we came up with a joke about it later:

Q: What has more holes in it than a slice of swiss cheese?

A: Nate!

Hopefully his blood counts come back good, and we simply get to add Tylenol, and go home. If he's neutropenic, that might earn us a stay at Lucy's Hyatt (Lucille Packard Children's Hospital). I'm pretty sure his ANC will be fine, so we'll end up going home. We'll see.

- Greg

Happy Birthday Andrew!!!!

Today is Andrew's 2nd birthday. We're not at home, we're off having fun, so I'm not actually typing this on his birthday. Instead, we're up at Nana & Papa's house, and we're going to play in the snow in the Sierras today.

For the last couple weeks, we kept asking Andrew what he wanted for his birthday. He always answered "cake". Nana is baking a cake, so he gets to chow down on that.

The boys have mostly recovered from their cough/cold/fever ailment. Poor grandma couldn't withstand the germs, so she's at home having a tough time of it. She's asthmatic, so it causes her a lot of trouble when she catches something. I guess she's been coughing something fierce, and her doctors have her on steroids (oh joy!) and some strong cough medicine. We're really hoping she gets well soon.

This birthday is far happier than last year. Andrew turned 1 only 6 days following Nate's diagnosis. Andrew stayed at home with Nana, Papa, Grandma and Grandpa Bob. Christa and I spent all day at the hospital with Nate for chemo. We got home, I carried Nate to bed, and it was early enough for us to have cake with Andrew. Luckily he won't remember that first birthday. We always will.

- Greg

A Sigh of Relief

Can you hear our big sigh of relief? Yesterday Nate had a spinal recheck after his oncologist saw a "suspicious cell" on a slide of his spinal fluid from last month. Leukemia will relapse, either in the bone marrow, or in the CSF (cranial spinal fluid). We've been on edge for the last month, so this is a huge relief.

Of course, life can't be that easy... last night Nate started running a fever (he had developed a cough the day before), and now today Andrew is running a fever. I was on the phone with the on-call oncologist last night at 3am, and since Nate's counts are good, we got to stay home and tough it out.

We'll see if Christa, Rebecca or I catch it. Oh, and since Christa's mom has been staying the week with us, we'll see if Grandma can withstand the germ assault.

Tonight, we drink.

- Greg

Happy New Year

Today is the first entry I've made in 2 months. I'd like to wish everyone a happy new year, and hope your holiday season went well. We had a great time. Rebecca is now 4 months old, Andrew is 2 weeks shy of his second birthday, and Nate is 5, coming up on his 1 year anniversary of fighting cancer. Wow. Amazing.

The kids are good, Rebecca had her 4 month checkup and she's right at an average length and weight. It's different for us, since the boys have always been big.

I'm updating our family picture here because it's way too old, it shows Nate when he was bald (which he definately is not), and it's missing Rebecca.

Nate's treatments continue. On the 21st of December he had a spinal for intrathecal chemo and to check the spinal fluid for leukemia cells. On the 23rd, his nurse called and said that the pathologist didn't see anything, but that Dr. Marina saw a "suspicious cell" and so he needs a re-check in a month. She said this happens all the time, don't worry about it and have a Merry Christmas. So, needless to say, we've been a little worried the last month. Next Tuesday he'll have his re-check, and we'll find out what's up. Please keep Nate in your thoughts. Last week his labs showed his blood counts dropped, and that just added to our worry. Today's labs showed those came back up a little, so it's probably nothing... but the worry never, ever leaves.

Christa is amazing as usual, she has been helping as an interviewer for the pre-school. Nate's teacher left, and they've been interviewing candidates and selecting a new teacher. Sounds like they had a tough decision between some good candidates.

Take care,

- Greg

Mr Hyde has left the building.

We did it... we survived a week of steroid hell. The one-week steroid "pulse" finished on Thursday, and this weekend we saw our son return. He was able to concentrate, actually play by himself for a while, sleep a little better, and generally feel better. He's still kind of hyper, but maybe that's because he feels better, I don't know. Or, maybe because the dexamethasone is still slowly metabolizing... Next hell week is in the middle of February. Can't wait.

We spent some time this weekend reorganizing in the house. We decided we really had to move Rebecca out of our room, and we really wanted to keep the guest room just that. So, Andrew officially moved into Nate's room (now it is "their" room.). They are getting used to it. Bed time isn't as smooth as it used to be, but they'll get better at it. We had to move a bunch of toys out of the room, shuffle the furniture around a bit, but now there are 2 race car beds (one big, one little) in there. Andrew is so funnny... I point to his little bed and ask who's bed is that, and he has a big smile and says "me!".

Rebecca is now sleeping in the "baby" room, which was formerly Andrew's. She spent her first night there last night, and did fine. She didn't wake up until about 4 or 5 this morning, so that was great. Hopefully she'll settle in there nicely.

Christa is doing an amazing job juggling these kids... last week was all messed up because of Nate's demanding steroid personality, but she manages very well. She found someone to come help out with the boys some. His name is Tony, and he's a junior college student that works as a camp counselor for kids with disabilities or something like that. she's going to have him come help with the boys a few times a week so that she can manage more stuff.

I still need to put some photos up here, but that'll have to be a different time.

Take care,

- Greg

I can't believe it's been almost a month

I can't believe it's been almost a month since my last message here. Lots of activity during that time. First of all, Rebecca is now 7 weeks old, and doing well. She's gaining weight and getting bigger. Her 2 month checkup will be coming up at the beginning of November.

Andrew is doing well, running around busy trying to do everything that his big brother does. I think he's 21 months old now, and he has a ton of words. He get's his ideas across well. Yesterday he was busy telling me to "come on ... play". He wanted me to follow him into the other room to play with toys.

Nate is doing pretty well. On October 8th, he turned 5 years old. I'm so thankful for that. I keep suppressing the thought that he would not have seen his 5th birthday without his treatment. On Nate's birthday I took the day off work and we headed over to Half Moon Bay for our annual pumpkin trip. The weather was beautiful as usual, and I'll post the pictures sometime soon.

Nate did come down with a fever on Sunday, the 17th, about 2:30 in the morning. That required a trip up to the Stanford ER to get blood counts and blood cultures. Luckily his immune system was responding well enough that we were able to go home and avoid being admitted for a hospital stay. His fever came back down, and was gone the next day, so it was probably a virus. But, as usual, it was no fun.

Take care,

- Greg

Sleep Deprivation

Rebecca sure likes to be awake a lot. Several feedings a night, and then she doesn't go back to sleep very well. Either we have to hold her for 45 minutes, which turns a feeding into a couple hour process, or she lays in bed with us. Neither option is great, so we're using them both. Christa is amazing, she's holding up very very well.

The boys really like Rebecca. Andrew is always asking for "baby, baby". And Nate is calling her "sister", as in "where's sister?". They're all very cute together. We have to be careful with Andrew around the baby, since he'll try and touch her face sometimes. This morning he was hilarious. He'd move his face close to her hand until her hand bumped his nose, and then he'd say "pop", pull back his head and start laughing.

We're having fun, even with all the work. Nate is back in pre-school, so that get's him out of the house a little bit (3 afternoons per week). Andrew is talking like mad, not very big sentences, but enough to get his ideas across. Rebecca is cute as a button, and is an angel as long as she is held. Actually, she does pretty well otherwise, also. We're just can't wait for a couple of long blocks of sleep at night. That'll make life a lot easier for mom & dad.

Nate's treatment is going exactly according to plan. That is good. Surprises are no good. In maintenance, his 6-mp was increased by 50% in dosage, and he seems to be tolerating it fine. His counts have been right in the target range. His oncologist wants his ANC between 750 and 1500, and that's where he's at (last week was 1250 or so). If his ANC is too high for enough weeks, they'll increase his chemo dosage. If it's too low for enough weeks, then they'll decrease dosage. Also, on a week-by-week basis, if his counts show he's neutropenic (ANC < 500) then we'll hold daily 6-mp dose until his immune system regains strength. So far we haven't had this trouble.

Both boys are in swim lessons and they're really enjoying that. Saturday I took them both down there. Nate got into the pool in his class, and then Andrew and I got in for Andrew's class. It's fun being in there with Andrew, and Nate is in a different corner of the pool so I can watch him and wave. This is a great part about having Nate's central line out... he can do the swimming. If he get's neutropenic, however, I'll keep him out of the public pool. It's not smart exposing him to too many germs then.

Christa is doing a fabulous job with the baby. I'm trying to help around the house the best I can, and relieve Christa from her duty to the baby as much as possible, also. Rebecca will be 4 weeks old tomorrow, so hopefully by the end of her second month she'll be sleeping a lot better. Both of the boys had been sleeping through the night by the end of the second month. We'll see.

Take care, - Greg

Rebecca is almost 2 weeks old, and Nate started Continuation

Rebecca is almost 2 weeks old. I'm done having fun with the family, and heading back to work today. Poor Christa, talk about having your hands full. 3 kids under the age of 5. Wow. We're getting lots of help, since she needs 6 - 8 weeks of recovery from the c-section to heal fully. That means she can't lift Andrew, our 19 month old moose of a son. Many, many, many thanks to Christa's mom Madie, and Bob, and my parents Doug and Judy. They're doing tours of duty for the next few weeks to help us out.

A week and a half ago, Nate officially started the Continuation phase of his treatment protocol, often called the "long term maintenance" phase. This phase will run for 96 weeks. Yeah, almost 2 years. What is different about this phase? Well, he'll get lumbar punctures (spinal taps) where methotrexate chemo is injected into his spine only every 12 weeks now, rather than every 3 weeks. He'll get IV vincristine once a week for 2 weeks on a repeating 16 week cycle. During the vincristine week, he'll be on steroid. Every single week he'll get a blood draw to check his blood counts (CBC with differential & platelet count weekly, and once a month tests for liver & kidney function). Once a week he takes oral methotrexate (six little pills). And, every single night he takes oral 6-mp pills (mercaptopurine). Sounds like a walk in the park, right?

Take care,

- Greg

Welcome Baby Rebecca

This morning at 7:55am baby Rebecca Doane was born. She was a whopping 7lbs 8oz, and 19.5 inches long. She's beautiful, with just a little bit of light, thin hair. She was delivered by c-section at El Camino Hospital in Mountain View, California.

Christa came through the surgery just fine. She's such a trooper. Afterwards she was feeling good, but a little nausea set in later.

Christa's mom Madie, and my mom Judy were down to see the baby brought into the nursery. Our boys will be down to visit us in a little while, so we'll see what they think of their new baby sister.

I put some pictures up at this link.

We expect mom & baby to come home on Saturday.

Take care,

- Greg

The tubes are gone!

Friday Nate had surgery and had his central line removed. That's a good thing. Unfortunately, that doesn't mean we're done with chemo. 31 weeks of treatment are done, 99 more weeks to go.

He was doing a little too much today, whacking the treat with a stick jumping around, acting just like a 4 year old boy. His wound bled a little, but nothing significant. Supposedly he can get wet at 48 hours post surgery, so I think I'll give him a shower tomorrow evening. He might end up truly clean for the first time in six months. Forget those sponge baths. Let's get back to the real thing.

We signed both boys up for swim lessons, starting in a few weeks. I've been taking Andrew this summer on Saturday mornings for a swim lesson. Nate tagged along to one, but ended up having a hard time. He really wanted to be able to swim, too. Pretty soon, and he can swim again. No more risk of infection from the central line.

Andrew seems to be fighting a little cold right now. Kind of sniffly and sounded a bit congested tonight. Hopefully he'll get over it quickly. And hopefully Nate won't get it.

Christa is tired of being pregnant. Soon, very soon, she'll be done. Another week and a half, and we'll have the new baby.

Long day yesterday but good results.

Nate had an LP, a BMA and a 4 hr. IV methotrexate infusion yesterday. A long day at the hospital, for sure. The LP & BMA were clear. I'm always a little nervous about those. So, Nate's Dr informed him that his tubes have to come out. He pretty well freaked out about that, lots of screaming and crying. He's been telling us that he's not going to have them out until he's all done with leukemia, when he's almost 7. I can't wait to get those out, but of course we'll have some conditioning to go through to get used to getting stuck with a needle. A normal bath, going swimming, being able to get dressed without those stupid tubes sure sounds nice to me. Surgery is scheduled for a week from today (8/20) to yank 'em out.

Nate will enter long term maintenance in a couple weeks, starting oral methotrexate pills, and increasing his 6MP dosage. His LPs will be every 12 weeks, and he'll have a steroid pulse with vincristine every 16 weeks. Kind of exciting.

He did have one thing in labs yesterday that was different. His ALT was more than 10 times normal. According to our protocol document, no change to the administration of MTX would occur for the next cycle, but if it continues to stay elevated we might hold MTX. We'll see where that goes to.

Good Weekend Camping

We had a good weekend camping. Nate and I both survived it. He got to fish, climb rocks, pee in the woods, sleep in a tent, and go 4 wheeling. And lots of burping without saying "excuse me". A regular "guys" camping trip.

I'll post more details later, and try and get the pictures up. For now, check out this picture of Nate sitting on a rock in the water.

- Greg

Mixing the potion...

And, so it begins again. A week of steroid. Nate just had his first dose this afternoon, and we'll have to see when it really kicks in. I expect Mr. Hyde soon...

Today Nate also had a IV push of vincristine, and will get another next Wednesday. His bloodwork today shows he's just barely above the neutropenic level. His numbers from today's blood test:

WBC 1.6 (Normal range 5.5 - 15.5 K/uL)
RBC 3.24 (Normal range 3.90 - 5.30 MIL/uL)
HGB 10.1 (Normal range 11.5 - 13.5 g/dL)
Platelets 289 (Normal range 150-400 K/uL)

ANC 568 (calculated from NRUT % & WBC)

Last week Nate had IV methotrexate, and hauled around the portable IV pump for a couple of days. He got through it without the sickness he had the time before (3 weeks prior). He was quite the happy camper to be unhooked from the pump, and able to run wild.

Over the weekend I spent some time trimming a tree, and also working on the swingset project that I've been neglecting. The metal parts are all painted, we picked up some new bolts, and now I just have to asseble and mount it to the side of the climbing structure. I'll have to put up pics when I finish.

August 6th I'm taking Nate camping (at least I hope so). The annual camping trip I take with some buddies is that weekend, and Nate is gonna tag along. It should be fun. I just hope his ANC recovers a bit, because that is his defense against infection. My friends are prepared that if I have to leave, I'm leaving all my gear where it is. That would be the plan if Nate starts running a fever. Nate will have a grand time, though, throwing rocks in the lake, hiking around the woods, and burning stuff in the campfire. When I took him camping (just the 2 of us) last summer, he had a great time stabbing leaves with a stick and then burning them in the fire.

Now, if I can just find someone to take Andrew for the weekend... Christa would have some much deserved quiet time at home...

Take care,

- Greg

10 Beautiful Years of Marriage

Married since July 22, 1994.

Ten years ago today my bride said " I do " . Christa and I have led a particularly charmed life. We have been together so long that we work so well together, and yet we have our own ideas and identities. Together we are strong.

We have worked hard in our professional lives, lived well with trips and fun. Now, we're in the family stage, raising our children. Together we're leading our son in his fight with cancer. I cannot imagine how I could succeed without her.

Christa is the most considerate, loving person I know. She and I were absolutely destined for each other. She shows her unselfish character in her daily accomplishments raising our children. Our fifteen years together is a testament to our commitment. I will be as devoted in another 50 years as I am today.

This year I can't give her those things many would expect on a 10 year wedding anniversary. She's 7 1/2 months pregnant, so taking a big trip to Hawaii is out. Our son is in the middle of his chemotherapy, and so we will spend our time at home. Fancy jewelry just doesn't say what needs to be said.

What I can offer is this: "I do." And, I love you.

For the whole world to see.

- Greg

Six Month Anniversary of Diagnosis & A Great Big Thank You

Six months ago today, on January 22nd, 2004, Nate was diagnosed with cancer. What a road it has been.

Doctors, spinal taps, surgeries, cancer drugs, anti-emetics, hospital stays, pills, midnight snacks, hair loss, IV pumps, heparin flushes, dressing changes, fevers, and fear. But here we are.

What else has there been. Family, friends, Legoland, Camp Okizu, toys, water fights, jumping on the bed, gymnastics, archery, pre-school, TV, fireworks, beach trips, little brothers learning to walk, auntie Amy, fire truck rides, fuzzy heads, fun and lots and lots of love. And so we continue on.

26 weeks of treatment are done, 104 weeks of treatment are left. It sounds so far away, but we will settle into the routine. As long as nothing unexpected happens, we can lead a normal life. Our "new" normal.

I would like to thank all of the wonderful family and friends who have helped us out so much. From the countless hours that family has spent watching Andrew, to the chores and shopping and whatever else we've needed, we are forever indebted. To all of our friends that brought so many meals, we can't thank you enough. We love the phone calls, the emails, and the visits. They provide much needed distraction from the circus we call our home. To all of my coworkers who have covered for me, I'm very grateful. To the friends and family who sent so many gifts for Nate, and often Andrew, thank you very much. To those on the ALL-KIDS mailing list, your knowledge has helped us walk through this madness.

Site Redesign

I'm busy re-designing our website. It'll look much nicer when I'm done. There will be no more frames involved in site. And, it'll be much easier to generate new journal entries so that Christa and I can both help keep everyone informed.

Please pardon the broken links for a little while.

- Greg