Christmas with the Cougars!

Here's a little video of our experience with The Christmas for Children with Cancer Foundation last night. It was a great time for the whole family! We love the goodness of the people who run this foundation. They are awesome! It was also nice to hang out with the BYU basketball team. Go Cougs!

Clinic 12-5-11

This weeks clinic visit marks an important milestone. It was the beginning of phase 3 of Jacob’s chemo treatments. Phase 3 lasts about two months but it’s also the date they use to determine the end of his treatments. Jacob will be all done with chemotherapy on December 5, 2014—three years from last Monday. It seems like a long time, and yet I’ve already been looking forward to getting to this point; I feel like we’ve achieved something.

There was another highlight from clinic this week: Jacob did awesome. Really awesome. He is getting used to what happens while we’re there and is much happier than he has been at past clinic visits—even on an empty stomach! He is amazing. I’m so proud of him. He happily played angry birds while the doctors looked at him and while he got his chemo medicine (the downside is that I couldn’t take a picture, because he was using my phone. Scott didn’t come with us this week, he’s back to work). Of course the moment when they poked him was awful, it always is, and I imagine that it always will be, but it’s to be expected—that hurts! However, when it was time to leave and they pulled the needle out Jacob happily announced, “that didn’t even hurt!” He told me later that he wants that nurse to de-access him every time.

Jell-o for breakfast before clinic (although it’s more fun to play with than actually eat)

Jacob went to clinic fasting (with the exception of some “clear liquids” including two bites of Jell-o). Once we got there however, I learned that he didn’t need to! There was no procedure scheduled! Argh. The calendar that they gave me said there was a lumbar puncture. Oh well. Jacob was good about it and as soon as they realized what had happened the nurse ordered Jacob some food. He wanted a cinnamon-sugar bagel ('cause that’s what the rest of us had for breakfast back at home). He munched on his bagel while they hooked up all the IVs and gave him his meds. He was just content. It was great. And I was so glad because I had been nervous about taking Jacob to clinic without Scott.

One more really great thing (I love having good things to report), the doctor said that often this medicine will make kids “puke-y” (her word) but Jacob has been fine! He hasn’t felt sick at all. Yeah! He did have a headache off and on, but other than that he has been great. I’m so glad. Hopefully it stays this way but I’m also trying to be ready if it doesn’t, you know, “hope for the best, prepare for the worst” (that’s what my mom always says).

And lastly, here’s all the medical stuff, for those interested. This third phase of chemotherapy (called Interim Maintenance) requires chemo every 10 days (instead of once a week). Jacob gets two meds each visit, Vincristine and Methotrexate, both through IV. And the dose will increase every time if his counts are high enough. There are no meds at home (except the antibiotic that he’s always on and a laxative too). His ANC this week was 3.0 (3,000).

Breakfast with Santa

Saturday morning we had breakfast with Santa Claus and all of his awesome elves: the student council of Lone Peak High School.

As part of their Gold Rush fundraiser each year these great kids put on a community pancake breakfast with Santa. Jacob had been looking forward to it all week. I think the first thing he said when he woke up was, “today is the day we get to have breakfast with Santa at Lone Peak!” (correction: that was the first thing he said when he woke me up, I don’t know what he said when he first woke up).

You bet he’s smiling under that mask. Only awesome teenagers putting on a fundraiser for our son with cancer could get Scott to sit on Santa’s lap.

Jacob with Tanner Jensen, Student Body President. Jacob & Ellie with some of the student council.

It was a great experience to see these kids putting on this fundraiser—and to see the parents that got roped into helping too! We were impressed with the mission statement of Lone Peak High that includes service in the community. 

Another highlight for Jacob was all the attention the teenagers gave him. He was loving it. All three of my kids were. They each got a good healthy dose of doting. That should hold them over until the next time they see Grandma.

Thanks Lone Peak High School! We love you! From the Woodward Family

I also just found out that the Alpine Christmas Concert will benefit Gold Rush this year (click for their website).  For more information about Lone Peaks Gold Rush you can visit Lone Peak’s website or their Gold Rush website (both hyperlinked). I know there has been some media coverage of Gold Rush, but I haven’t seen any of it yet. If anyone has a link to articles, etc. please leave a comment, I’d love to see them.

First Visit from the Home Health Nurse

Friday we met Jacob’s home health nurse. She comes to draw Jacob’s blood; the doctors need to know what his counts are before each visit for this next phase of chemo.

We were all a little anxious about this, at least I was. I didn’t know quite what to expect. I know what it’s like to have Jacob accessed at clinic or even to draw blood in a lab, but at home? On the couch? All those gloves, syringes and sterile things belong in a hospital, not in my living room.

On the other hand, I thought, it could be more comfortable for Jacob to just be at home, on the couch watching a dinosaur movie instead of at the clinic. I just didn’t know what to expect.

For the most part things went fine. I realized that Jacob hates being poked with a needle, regardless of location (not that I excepted him to love it just because we were at home) and, as always, the anticipation of the poke is the worst part.

Now that the initial visit is over with, I know how to plan for the future. For example, we won’t have Isaac in the same room next time. Poor guy got a little woozy at the sight of Jacob’s blood filing those vials. That was a little overwhelming for me, trying to comfort Jacob and Isaac at the same time. Thankfully, Ellie was sleeping. But after a drink and sitting on the couch with ‘Snuggle’ the bear-dog stuffed animal, Isaac was fine. (Keep an eye out because ‘Snuggle’ makes an appearance in our Christmas card this year).

Phew, I was glad when it was all over and we could just go back to watching the dinosaur movie like a regular Friday afternoon.

So Much to be Thankful For

Now that Thanksgiving is a week behind us, it’s time for me to blog about it. Isn’t that about my track record—blog about things a week after they happen? Oh well, at least it gets blogged (is that a word?) So while my boys happily play the Wii and my daughter naps, let me tell you about the sweetest Thanksgiving I can ever remember.

What a great holiday Thanksgiving is. Food, family and gratitude; does it get any better? Seriously, who needs presents? It’s my new favorite holiday.

We got to enjoy Thanksgiving with our parents and siblings (Jacob’s grandparents, aunts, uncles and cousins).  At both family gatherings we participated in the time-honored tradition of going around the table to share things we’re thankful for. It was particularly sweet this year; I’m sure you can imagine.

Scott and I have so much to be grateful for—each other and our children topping the list. We’re so glad that Jacob’s outlook is so good; this year, I’m thankful for cancer research. We’re also grateful for the army of friends and family who love us and pray for us. I’m grateful for each note of encouragement and each “thinking of you” text or email (or Facebook post, or blog comment…on and on through the various forms of communication!) Sometimes those messages touch me so deeply, I can’t describe it. Thank you.

Scott even says he is grateful for cancer. I feel that too, though I can’t quite say it like that. I’m grateful for all of the blessings and the perspective that has come as a result of Jacob’s cancer. I hope it’s making us better people. This experience, for us, has unlocked the goodness of other people and a new sweetness in life.

Lastly, and perhaps most significantly, Scott and I have a deep appreciation for our Savior, Jesus Christ. The strength of the Lord is real and we have felt it. We are so grateful for His atonement and resurrection. We are thankful for His church and living prophets. All of the other things that we are thankful for come from Him and I hope we can praise His name better because of it.

And we’re thankful for family! For grandparents, aunts, uncles and cousins near and far (just cause you’re not pictured doesn’t mean we’re not grateful for you!)

We’re also very, very thankful for uncles (and one particularly awesome cousin) with hair-less heads!! You guys are the best! We love you all!

Lone Peak High School’s “Gold Rush”

. Me, Jacob and “Santa” at Lone Peak’s “Gold Rush” Assembly 11-16-11

Every year Lone Peak High School in Highland, Utah does a service project around Christmas time; they call it “Gold Rush” and it’s a fundraiser for a local cause. This year they asked us if we could be their “cause” and donate some of the money they raise to Jacob’s medical expenses. We were blown away. Really, blown away. Still kind of blown away, actually.

“Gold Rush” is a bunch of events, including a dodge-ball tournament for students and teachers, a Christmas dance, and caroling in front of the local Wal-Mart, among other things. Tonight (Thursday, December 1st) they’re going to do something called “Kids in the Cold.” A bunch of teenagers are going to hang out in front of the school—in the freezing cold—in an effort to raise some money. Only teenagers would endeavor to raise money in such a way, and I love them for it! Last I heard they were going to keep their student body president locked in a box until they raised the desired amount. Again, only teenagers.

Me, Scott & the kids plan on attending (for a little while at least) to offer some moral support and maybe some hand-warmers and hot chocolate. It’s the motherly instinct in me. I can’t just let them sit out in the cold. Their own mothers must be shaking their heads right along with me. But again, I’m grateful for it. Over the past two months I have learned some wonderful things about teenagers, including how unreserved they can be and what big hearts they have.

And we’re just amazed that they would help us in this way. That being said, however, I have debated whether or not to even put this on the blog. Let me tell you why. I have realized recently that we are not the only ones who need help with medical expenses. Neither are just cancer families the only ones that have a difficult time finding money. Others in my very own neighborhood—with different medical challenges— face the same financial struggles we do, but don’t often get fundraisers like this. I’m so grateful, but it seems unfair too (not that life—or money for that matter—is ever fair). Do you see why this is difficult for me to write about? I’m just keenly aware lately of all the difficultly all around, in everyone’s life. I guess this whole experience with Jacob’s diagnosis has made me a lot more concerned and compassionate. Empathy borne of experience, you know? But compassion is a good thing to have, especially at Christmas time. And I guess even if I can’t offer money or make everything fair, there are still things I can do to help those around me. It definitely takes more than money to get through hard times.

Clinic 11-21-11 and Feeling Better

Last Monday was probably our best clinic visit yet in terms of Jacob’s disposition. There was no glaring (see previous post). The reason he was so pleasant was that he didn’t seem hungry; we learned that we can give him Jell-o before going to clinic even if he isn’t suppose to ‘eat’ anything. He can only have clear liquids and Jell-o is considered a ‘clear liquid’ (for anesthesia purposes anyway). So Jacob got Jell-o for breakfast and was much happier. Hooray! And his clinic time was earlier than last week so he didn’t have to fast as long. And we think his appetite might be decreasing—just a little bit though. Still ate a great Thanksgiving dinner. Two, actually.

Jacob playing with the dinosaur robot while waiting for his procedure.

This was Jacob’s last lumbar puncture for this phase of chemo (I like to count any mile-markers that I can). So no clinic tomorrow since there is no lumbar puncture and no medicines that they need to administer at clinic. He just has the medicine we give him every night at home for the rest of the week and then this phase is done! And we are glad to have tomorrow off. Things are actually starting to feel “back to normal” around here. Jacob is taking this phase very well (doctors said it’s generally an ‘easier’ one).

His ANC went from 4.0 last week to 1.1 this week, but that was still good enough to spend Thanksgiving with extended family—which we were grateful for. And his energy is much better, he is a lot happier and we feel like we have “the old Jacob” back.

There is much less of this happening:

And even some of this happening instead:

He is vacuuming and doing extra chores—trying to earn money for more Star Wars Legos, isn’t that great? I love it.

He still wears his jammies ninety percent of the time though. He loves his jammies, always has. The other day I was trying to talk him into getting dressed, even coaxing him a little: “You know, you feel better when you get dressed, you feel less lazy…” I was telling him.

He responded in a plain, matter-of-fact voice, “yeah, but I do have cancer,” (it’s so hard to convey his tone by typing—there was no self-pity whatsoever, just stating a fact).

And I thought, “well, that’s true, Buddy—you do have a point there.”

Of course, he stayed in his jammies.

Clinic Monday, November 14th and Another ER Visit

Last Sunday (the 13th) Jacob started running a low-grade fever—about 100 degrees, although it was very difficult to get an accurate reading with my thermometer. It would say 102.1 then 100.4 then 99.6 all in a row. I was so frustrated. Those numbers are the difference between “wait it out” and “get right into the ER do not pass go, do not collect $200” (if you know what I mean). Of course Scott and I called the clinic and talked the doctor on-call (being Sunday) and she said we probably ought to bring him in and have some blood drawn to see if there’s any bacteria. So off we went to Primary Children’s. We were planning to go up to the Salt Lake area anyway that night to have dinner with my family.

Scott took Jacob to the ER where they did blood tests and a chest X-ray. We're getting used to the ER routine, isn't that interesting? Two months ago I'd never taken any of my children to the ER and it totally terrified me. And sometimes it still does, but we've taken Jacob to five ER's on four occasions in the last six weeks and it's not so scary anymore (I guess I say that because this most recent visit really wasn't anything too serious).

Anyway, the ER doc's determined that Jacob had a cold. Just a virus, likely not a bacteria. After a few hours they let him go home. We spent the night at my parents house and went to clinic the next morning (we were already planning on spending the night in Bountiful, so, it worked).

Monday morning we were back in clinic with a very grumpy boy. It had been a long night. In the ER Jacob got a lot of fluids through IV and he had to get up and pee a lot. And because he was having a procedure and going under anesthesia he couldn’t eat anything. It was rough.

So Jacob had another lumbar puncture (“back poke”) to put a chemo called Methotrexate into his spinal fluid. We learned that Jacob will have 18 or 19 back pokes over the course of his 3+ years of treatment. I don’t know how many he’s already had, maybe five? I’m just guessing.

The good news is Jacob’s ANC is really high: 4,000 (or 4.0, it's stated both ways). That’s the highest it’s been since he started treatment. ANC is his ability to fight infections. And it’s a good thing, too, because I’ve had a bad cold this week (yuck!) Overall he is feeling good. Everyday he plays and reads and gets mad at his brother—just like normal! He is sleeping well at night and we are just happy that he is feeling as well as he is. He’s even been running around the house this week and we hadn't seen that for a while, so it’s so good to see and a good indication that he is feeling well.

(Just a note on my thermometer, by the way: I was ready to trash it, but then I read the instruction manual. Good idea, huh? I understand a little better how to get a more accurate reading. It’s an in-the-ear-thermometer and there is a handy little picture showing how the thermometer needs to be aimed right at the ear drum—I didn’t know that, just thought it had to get inside. Hopefully in the future it will be more reliable, we’ll see).

Clinic 11-7-11 Phase 2 of Chemo Begins

Monday took us back to the clinic to begin the second phase of Jacob’s treatments. This one will last about four weeks (28 days, I think). This phase—called Consolidation—is generally a little easier than some of the others, meaning Jacob will be feeling a little better. So far that has been the case. I posted on Sunday about him playing with his brother and his toys and that has happened everyday this week. Yay!

The Consolidation phase mostly focuses on getting the cancer-killing medicine into the blood that is in Jacob’s brain. Our bodies have a blood-brain barrier that prevents things—medicine, disease—from getting into our brains and that’s a good thing; it’s designed very well and I’m grateful for this “barrier.” But, to be sure that the chemo can kill any leukemia cells that might be hiding in Jacob’s brain we have to get around this barrier (as I understand it). Regular chemo injected into his veins won’t get to the brain. So, the medicine, called methotrexate, is injected into his spinal fluid in a procedure called a lumbar puncture. We also have a chemo medicine that we give to Jacob each day at home.

Sad face, I know. Pretty sure he is glaring right at the nurse or doctor at this moment and the face accurately sums up his feelings. If you look closely you can see his port accessed there on his chest. Each time we go to clinic they poke through his skin to ‘access his port.’ Then there is a tube that hangs down and they can draw blood, inject medicine or do whatever they need to do. When it’s time to go home they take out the needle and ‘de-access’ him. The hardest part of the de-access is pulling that sticker off. And at access time the anticipation is worse than the actual “poke” I think. Plus we have a numbing cream we put on it before we go so it’s not so bad.

After all of the tummy trouble Jacob’s been having lately the doctors were extra concerned and wanted to follow up on how he is doing stomach-and-gut-wise. Here Dr. Sato is checking his belly, seeing how tight it is, how big it is, etc. Can you guess what he’s playing on my phone? Starts with “angry” and ends with “birds.”

Clinic isn’t all miserable though, he gets to play with this cool dinosaur robot while we’re waiting for his lumbar puncture procedure. And in the other picture we’re laughing at the dinosaur robot running into the garbage can.

So lumbar punctures for the next two weeks (on 14th and the 21st) and that’s it for this phase. And the medicine at home until the end of the month and then Consolidation will be done. I’m just glad there’s no more steroids (for now). Jacob is sleeping through the night and feeling much less cranky (I mean, other than that picture above…but, you know, who wouldn’t be?)

Clinic stats:

Height: 40.5” (102.8 cm) hasn’t changed much

Weight: 39.8 lbs. (18.1 k) hasn’t changed much

And I don’t know his ANC, hematocrits or platelets—it just didn’t come up. I assume since he hadn’t had chemo for nine days (since Oct. 28th) that these numbers were all high and we didn’t need to talk about them. But I do have some new important numbers to report: his tummy measures 61.5 cm (about what it was when we left the hospital) and we hope that goes down as he continues to get cleaned out. And his bilirubin is down…but I can’t remember the number. It’s down and that’s good! Means his liver’s doing good.

Operation Bald Eagle

As you already know, chemotherapy attacks all of the fast-growing cells in a persons body, including cancer cells. It also attacks and kills hair cells; chemotherapy makes the hair on a persons head fall out.

Jacob’s hair started falling out a few weeks ago. We really noticed about two weeks ago—it was just coming out all the time and it was beginning to look thin. Scott has been asking Jacob if and when he wanted to shave his head and Sunday night he was ready.

From the beginning Scott said that he would shave his head also. I think that this will strengthen the bond between these two forever. We couldn’t talk little brother Isaac into it though, and that’s OK—he does lots of other things to show Jacob his love.

Isaac, the ever-blunt four-year-old, did announce to Scott and Jacob that “that looks weird!” We encouraged him to use the word “different” instead of “weird.” It definitely is different. My first thought was, ‘now he really looks like a cancer patient.’ It’s sort of the standard sign of cancer treatment and it brought a new level of reality for me. But it wasn’t as hard as I thought it would be. Scott, of course, made us laugh through the whole thing and Jacob takes everything in stride. He didn’t seem overly sad, he just accepts each thing as it comes. It wasn’t until today, Thursday (five days later) that he asked when it will grow back.

Seriously, is this guy handsome or what? That is one good looking bald man. The best dad a boy could ask for. And speaking of handsome bald men…

These are my four brothers. They’re not all pictured together, but here’s all four of them on Monday night. As soon as they heard about “Operation Bald Eagle” they got together for a little Family-Home-Evening-head-shaving-activity. Now, you need to understand that no men love their hair more than Swalberg men. It’s true--ask their wives. And for good reason too, they’ve all got great hair. But they love their nephew more. Isn’t that so cool? Jacob grinned from ear to ear when I showed him the pictures (Isaac didn’t recognize them).

Again, thank you all for your love and prayers on our behalf. This week has been a good week. Jacob has more energy than he’s had in weeks. He is playing everyday and it’s been good for all of us.

5K Fun Run (October 29th)

With our two unexpected hospital stays I didn’t have to time to post about the 5k that was held at Spanish Fork High over a week ago. The 5K fell between the two ER visits, and that was a blessing—it was a nice boost to our spirits to see so many friends and family come run in the cold for our boy. Seriously, nothing says, “I love you” like running in the freezing cold (except maybe shaving your head…and that’s coming in a future post!)

The race began at 8am, so it was an early morning at our house. Jacob was not pleased at the prospect—remember he had stayed up past 2 am putting together Legos.

Once we got there we positioned Jacob at the end of the race to “greet” the runners as they came across the finish line. Of course, he is wearing a mask to protect him from any possible germs that might be floating about.

There were over 300 people who participated. We were so amazed! And we had so many friends and family come to support us. It was wonderful. I don’t have pictures of all of our friends and family, but I’ve got a few. Thank you so much everyone!

Please note that a good many of these people drove an hour to participate. That is an early morning! Thank you SO much.

It was so great to see our friends and family, but it was equally wonderful to meet all of these WONDERFUL teenagers who put this event together. These guys are amazing, we are so grateful for them!

When we very first started talking about the possibility of fundraising, Scott’s brother said to us, “be sure you get teenagers involved.” I remember thinking, “yeah, yeah, they’ll be great man-power.” Little did I know what great organizers they would be! Truly, I have been so amazed at these incredible young people and all that they have done for our family. I hope that my kids grow up to be like them.

From the Woodward family, THANK YOU ALL SO MUCH!!