Happy Birthday Jacob!

Jacob turned 6 years old today!

It began in the Emergency Room at Primary Children's hospital last night. The whites of Jacob's eyes started going yellow earlier this week, so Sara called the oncology clinic (using our top-secret redphone direct-line access to nurses) and asked them about his eyes. They told her that this was abnormal and that we ought to come to the emergency room to have him looked at pronto. Probably something going on with his liver.

So we packed up.

Arriving at PCMC at 5:00 pm, we were placed in an ER room where we waited to be seen. We talked to one another. We fidgeted. We played Angry Birds on mommy's phone. We waited. It was well nigh an hour before anything really "medical" was done. Little did we know that we were going to have a lot of practice waiting for the next 15 hours. Lots of practice. Is this why when we come to the hospital we are called "patients"? Is that some effort to subliminally condition us to be good, uncomplaining "waiters"? And shouldn't that be spelled "patience"? Or maybe it should be "patiences" or perhaps "patiencees," or something. Anyway...

After about an hour they came in and drew blood from his port ... and then we waited for another hour. They then came back in and told us that one of the labs for his bloodwork didn't work and that they would need to draw some more blood. So they did ... and so we waited ... for more than another hour. Meanwhile, Jacob was starving for food and the nurses were saying that he couldn't eat anything until the lab results came back--just in case they needed to do something else "medically important" (kind of vague as to what). So we waiting some more and had a brief little devotional from the Book of Mormon and then watched "How to Train Your Dragon" and then watched "Bolt" and then played Angry Birds some more. All the while the angst of waiting and the discomfort of hunger were building to an emotional eruption.

Thankfully, Jacob's uncle Spencer and aunt Olivia came to visit, bringing with them the largest basket of snacks I've ever seen in my life. But, of course, he couldn't eat it :( Oh, the ironies of life!

As the clock struck 12:00 am and it was officially Jacob's birthday, the first words out of his mouth as a 6 year old, I believe, were "I WANT A TACO!!!" said at full scream. Yup, that is how his sixth year of earth-life began--in a hospital emergency room, bone-tired, and taco-less. In desperation I dashed to the cafeteria and back with some potato logs and fry sauce trying to get something in his belly before he had to officially begin his midnight fast (in preparation for anesthesia in the morning), which had apparently already begun at like 8:00 pm. He ate a little and cried a lot, and then somewhere in there I fell asleep on the floor.

Needless to say, after a lot of waiting, and blood work, and an ultrasound, and then more waiting for results, we were finally officially admitted to the hospital at about 3:00 am and given a room on the 4th floor. Then, after taking a small nap, receiving a lumbar puncture, having some chemo shot up his spinal column, and getting some bone marrow extracted from his hip, Jacob ate a little lunch and nestled down for a much needed nap in a hospital chair. Poor guy.

On our way home Jacob wanted to eat some PF Chang's for his birthday, so we did, and once we arrived home around 10:00 pm he opened his Star Wars legos we got for him. Because he "wasn't tired" we let him start putting his legos together with the understanding that I would not be able to help him as I would not be a very good daddy if I didn't get some good sleep. He agreed and began to build. I awoke at 2:30 am this morning (!) and informed him that it was probably time to go to bed. That's right, he had been building his Star Wars legos all by himself for 4 hours non-stop! And thus ended the day that Jacob turned six.

Tummy bug=the pits

This is another post about Jacob’s poop. Just so you know from the outset.

Last Friday at clinic I really thought we’d found some answers to this tummy bug problem. The doc said that it could be the bacteria in his body all out of whack because of the chemo. So they tested him for something called C-Diff (short for clostridium difficle—I just learned on Wikipedia). Ever had your kid get severe diarrhea after a round of antibiotics? Same type of thing.

To test for the C-Diff they needed a stool sample. I bring this up only to tell you that Scott was hilarious about the whole thing. He made so many jokes and had the nurse just laughing as he walked out of the bathroom with Jacob. He would say things like, “We left a special present in there for you...bet you can’t wait to find out what it is."

Well, I went home confident that this was causing Jacob’s violent diarrhea. Note: the use of the word “violent” is not an exaggeration. I pride myself on accuracy, I was trained in journalism. (Some may think those last two statements contradict each other). I thought for sure we would get positive test results, get a prescription and get this problem solved. Yeah.

No yeah.

Monday the test results came back negative. I was so bummed that his bacteria wasn’t out of whack. Because it means there is still nothing I can do for him. Being unable to help has to be one of the most frustrating feelings for a mother. And we’ve probably all felt it.

So now we just wait. Of course this Friday when we go to clinic I have lots more questions. Can I give him a probiotic? I know he can’t have Imodium because it may enlarge his colon. Is there anything else I can do for him. He’s getting up 3-5 times a night to go potty (and to eat, see previous post) and running to the bathroom throughout the day.

This stomach virus has to have almost run it’s course by now, right? I mean, weak immune system or not, it’s been almost three weeks! The irony is that steroids and Vincristine (his chemo medicine) are suppose to plug him up.

*Don’t forget: 5K Saturday!

4am Food Fest

In the early hours of Friday morning Jacob woke up wanting pasta salad. And a rice crispy treat. And chips and salsa. And a bowl of Chex cereal. And a slice of turkey. And finally a sugar cookie (the last of which I gave him so that he would go back to bed).

As you can see, his steroid cravings continue. The Dex (short for Dexamethasone) make him extremely hungry and make it difficult to sleep. So the 4am food fest is a common occurrence at our house.

But it’s not just in the middle of the night; for breakfast on Monday Jacob had 2 waffles, one and a half hamburger patties dipped in ketchup (no bun, just ketchup), 2 pickles, 2 bowls of Honey Bunches of Oats cereal and a cookie.

Yesterday he was in tears because he wanted more pasta salad. My mom was here so I ran to the store to get the supplies. I rushed home, made the scrumptious salad and then he wanted pop tarts. Of course, we didn’t have any pop tarts. But a kind neighbor did (actually, the kind neighbor’s mom did and she went to get them for me—what a sweetheart!) Before he’d even finished his pop tart he wanted Japanese curry. Sigh. I just can’t keep up. And the dishes—oy!

Jacob enjoying the pop tarts of happiness.

Three more days of this. Friday is his last dose of steroids—at least for a while. (Friday is also his birthday, incidentally). Five more doses. Ten more milliliters. We can do this, we’re almost there. Then maybe we can get some sleep around here.

*Remember there’s a 5K fundraiser on Saturday. More info here.

100% of 5K money going to Jacob now

In previous posts we’ve told you of the amazing teenagers at Spanish Fork High School who made Jacob their little mascot for the year and are doing fundraisers to help us pay for his treatments. We continue to be amazed by their generosity and goodness. Today we were amazed even more.

The track coach, Alyssa Larsen, called me today to tell me that now instead of $10 of the $15 registration fee (or $15 of the $20-day-of registration fee) going to Jacob, all of it will go to him; the entire amount of each registration. This is possible because these amazing teenagers spent their fall break going around to local businesses getting sponsors for the T-shirts, the food and the raffle prizes. Because businesses are sponsoring these other expenses 100% of the money to register for the 5K fun run will go to Jacob’s medical treatment.

I’ve been at a loss for words to express gratitude for everyone who has helped us these past three weeks, and I’m still stunned almost silent. How does a person say ‘thank you’ for such kindness? What kind of wonderful teenagers spend their fall break getting sponsors for a fundraiser for a boy they’ve never even met yet? (By the way, we are all so excited to be at the 5K this Saturday and meet these incredible people. I hope that Jacob’s counts are high enough for him to attend the event!)

Truly, how do I thank these people? You people. You are amazing. As I’ve already said, I have a sincere desire to be a better person because of the goodness of the people all around us. And, if anyone has any ideas how we might thank, recognize and honor these wonderful kids putting this together for us, will you let me know? :)

Information about the 5K as well as a link to register are in the previous post.

5K Fun Run for Jacob This Saturday! *Updated*

Spanish Fork High is sponsoring a 5k/Fun Run for Jacob this coming Saturday. A few days ago we received a flyer on our door for this event. It reads:

"Come join us for a good time to help raise money for Jacob Woodward, a 5-year old boy that was recently diagnosed with Leukemia.

"WHERE: Spanish Fork High School (99 North 300 West, Spanish Fork, Utah, 84660)

"WHEN: October 29, 2011 @ 8:00 am

"COST: Preregistration ~ $15. Registration Day of ~ $20

"HOW TO REGISTER: *To Pre-register Online CLICK HERE. To register in person come to SFHS Finance Office to pay and fill out a participation form (closes Oct. 28th @ 3:00 p.m.). *Registration Day-Of: Come to SFHS Bus Loop at 7:30 am and we'll have forms there.

"WHO: ANYBODY!!! Friends, Family, Strollers, 4 year-olds, etc. We need as many as we can get!

"* A T-shirt will be given to everyone who participates along with hot chocolate, fruit, and snacks... Come Help Jacob!

"Any Questions? Contact Sadie Ethington (801-367-2300) or Alyssa Larsen (801-380-6280)"

Isn't that amazing? They told us that $10 of each entry fee will be going to Jacob. I imagine the rest will go to covering the costs of the t-shirts and hot chocolate. The cool thing is that this is the day after Jacob's 6th birthday and the last day of "phase one" of his chemotherapy. We look forward to symbolically beginning the next leg of Jacob's journey by participating in this 5K!

Clinic last Friday 10-21-11

Friday was our third clinic visit. We’ll be going once a week for chemotherapy for the next 6-8 months or so. When we first get there we do the normal doctors visits stuff: height, weight, blood pressure, temperature, etc. etc.

Here’s Jacob getting his blood pressure taken. He used to hate this, sometimes he would scream. Now he’s pretty much a pro. He's used to the thing that “gives his arm a hug.”

Can you tell how puffy his face is getting? That’s from the steroid he’s on. He’s got a round little belly too, though you can’t really see it in this photo.

We try to bring things for Jacob to do while we’re there. This is him putting together his newest Star Wars Lego set. He really impressed the nurse with how he can put these things together. She asked, “have you done this one before?” Nope, but he has done several other Star Wars Legos. And Dad was there to help.

After they check his vitals it’s time to access his port. ‘Port’ is short for Port-a-Cath, or “portal catheter.” It’s a central venous access device, which basically is a way to put things into his blood, or to draw his blood without having to do the traditional IV each time. It’s a device surgically implanted into his chest and it’s totally under his skin. They just poke into it and they can do what they need to do.

I don’t know if I explained that very well. Here’s the Wikipedia entry if you want to learn more.

So on Friday, they drew blood to do the weekly test and gave him his chemo. It was just a syringe full of Vincristine. It just took a minute or two to put his chemo in. He didn’t have to go under this time for any back pokes or bone marrow draws. That was a relief (this week).

Here we are ready to leave. He wears a mask going through the hospital; “lots of sick people come here,” says the nurse.

On our way to the car he wanted to stop and watch a butterfly. Normally, or previously—I guess I should say—this is not the kind of thing that I would let my kids do for long. You know, ‘places to go, people to see,’ blah, blah, blah. But we hung out and watched that butterfly for quite some time. Then we went to Panda Express for lunch. His new favorite.

Clinic stats:

Height: 40.2” (or 3 feet, 4 inches or 102 cm however you want to measure it)

Weight: 39.6 lbs. (17.8 k) That’s my boy! I guess it’s mostly water though…

ANC: 2.0 (Absolute Neutrophil Count, this amounts to his ability to fight infection. Regular counts in you and & I are 5.0 to 10.0. But 2.0 is good for Jacob; When it gets to .5 he has very little infection fighting ability. Last week he was at .5).

HCT: 27.1 (Hematocrit, basically red blood cells—they’re the ones that carry oxygen. Typical levels in a non-cancer patient are in the 40’s I think. If he gets below 25 he’ll need another blood transfusion).

PLT: 136 (Platelets, they clot your blood. This is a good number for him; I dunno much more than that)

Jacob: Spanish Fork High's "Little Don"

Can you imagine how Sara and I felt last week when Spanish Fork High's track & field coach, Alyssa Larsen, approached us out of the blue and said, "Our principal, student body officers, and club officers at SFHS would like to dedicate all of their fundraisers all year long to Jacob." Whoa! How do you respond to such a generous proposal?

"We'd like to make Jacob our 'Little Don' for the year," she continued. (The mascot for SFHS is the "Dons," which, as I understand it, is a Spanish gentleman, as in "Don" Quixote, "Don" Juan, or "Don" Giovanni. So essentially they are dubbing Jacob their "little gentleman"). She brought over a little Jacob-sized SFHS hoody and gave it to him to make it all official.

A week ago last Friday, a picture of Jacob was shown at their school assembly and the idea of helping raise funds for Jacob's treatments was officially adopted by the student body. Later that evening at their home football game pictures of Jacob were posted at the front gates and sometime during a break in play (I think halftime) the student body officers did a "dash for cash" using what they called "Jars for Jacob," which consisted of multiple SBOs running through the stadium bleachers to see who could collect the most money in their jar, all of which will be donated to Jacob. Can you believe that?

The Hispanic club has apparently already ordered rubber wristbands of the "Livestrong" genre, only they are blue and just say "Jacob" on them. 1,000 bracelets were donated to this club and they are selling them for $1 each to the student body in hopes to raise at least $1,000.

We are absolutely stunned by and tremendously grateful for the outpouring of generosity shown by Principal McKee, the student leaders, and the student body of Spanish Fork High School. It is overwhelming, isn't it, to contemplate what is being done for one obscure little boy in one little city in Utah by a large group of teenagers who haven't even met this boy? It's just a little more overwhelming for Sara and I because that little boy happens to be our little boy.

Truly, when a group of teenagers are inspired by a common cause and unitedly set their hearts to accomplish something they will move heaven and earth to achieve it. We are grateful beyond words that Jacob has become the cause and inspiration for Spanish Fork High School!

Not enough words for our gratitude

This week for our family home evening lesson we talked about being grateful. We tried to make a list of all the people we are thankful for and everyone who has helped us these last two weeks. Making a complete, comprehensive list seems impossible but we were brainstorming all the same.

Scott wrote our list of people we’re thankful for on our white board (a Woodward family home evening tradition—using the white board).

I can not explain the feeling of love that has come into our lives and into my heart as I have learned that—truly—everyone we know is praying for us. It is an incredible feeling. We have received so many cards, letters, texts and emails. We have received goodies, and hugs and dinners. People are so willing to help, even if it’s just to talk or cry with us.

And all of this has caused me to wonder, more than once, “would I do this for someone else?” “What if it was my neighbor or friend? Would I give like others are giving?” I have been thinking a lot about these questions lately. And the truth is, I don’t know what I would have done, but I know what I want to do from here on out and for the rest of my life. I want to be more like my friends and neighbors. I hope that doesn’t sound trite. It may sound trite, but it isn’t meant that way. I am more sincere than I have ever been; your emails and letters have touched my heart, lead me to serious reflection and an intense desire to be a better, more loving, more compassionate person.

Thank you.

Jacob made his own personal list of people he is thankful for too. He got tired quickly, but this is what he wrote:

At the top of the list, the very first person he thought of was his primary teacher, Sister Clark. She has done so much for us and has been so loving and concerned for Jacob. As it happened she was the very first person to know we were going to Primary Children’s Emergency Room to see what was happening with Jacob that Thursday afternoon almost three weeks ago. She knew something was up and she just held me and cried. We have not left her thoughts and prayers since that moment. She is truly an angel. Tiffany, thank you.

Next on the list is Jacob’s friend Ben (Sister Clark’s son) who gave Jacob his favorite toy dragon--to keep--last week. After that was his friend Caleb who gave him some pajamas. Jacob wears PJ’s most of the time lately, and with his steroid weight gain he fits into very few comfortably. Caleb had some out-grown ones that Jacob is really excited about. Three pairs of Spiderman jammies can make a boy very happy.

Jacob is also grateful for his grandparents. Their parental love has been a strength to all of us (both sets of grandparents, by the way. Isn’t wonderful that there is more than one grandma and grandpa?) Finally, Jacob wrote that he is grateful for his kindergarten class. They sent a package with cards, hearts and lots of love. It means a lot to him.

Jacob, if you ever read this one day (and I hope that you will) I want you to remember the goodness of people. I’ve already told you this, and I know that you know, but I want you to remember that people we don’t even know are praying for you now as you fight this cancer. And all the people that we do know have reached out to comfort and to strengthen us and to pray for us too. Sometimes in life we get overwhelmed or a little scared about the world we live in; it is the last days after all and Satan does rage in the hearts of some men. But my son, remember that people are good. People give and people love. People are good and that comes from God. There is Divinity in us and because of that we have an instinct to comfort, and to lift and to love and to bind up the broken-hearted, just as our Savior does. Peace and comfort come from Him, but often in comes in the people around us.

Thank you again for loving us and for making me a better person in the process. With all our love, thank you.

Tummy bug—still

Jacob is still fighting this stomach virus. We took him to clinic on Friday and they put a bag of IV fluid in him to make sure he stays hydrated but he has had ‘the runs’ for about 12 days now. (I’m trying to find the most polite, non-embarrassing way to blog about this. Years from now I wonder how Jacob will feel about me posting information about the frequency of his bathroom usage on the internet). He runs to the bathroom at least a dozen times a day.

I have really taken my immune system for granted. Most of us get a little stomach flu and it lasts a few days at the most. But when you don’t have a fully-functioning immune system it can go on for weeks apparently (the weakened immune system is from the chemotherapy—it kills the leukemia cells and his normal white blood cells too). On top of this serious stomach ache, Jacob is still on a steroid and still eats and eats and eats. As you can imagine, this is quite problematic. Let’s just say there is a lot going through his system. And his bum is really sore.

It’s a real bummer.

Tummy bug :(

Jacob's got a stomach virus. Poor guy. He's mostly miserable but not totally miserable; I saw him laugh and even smile a few times today. But, you know, he just doesn't feel good. Dehydration is what we are concerned about right now. We're just trying to fill him full of liquids.

Tomorrow we're off to clinic. He needs another bone marrow biopsy and an injection of chemo. They have to "put him under" for the biopsy. After tomorrow he'll have had 4 bone marrow biopsies in 2 weeks.

Isn't the phrase "put him under" kind of odd? Put him under what?

It is not easy holding my boy while they shoot some white stuff in an IV, count down from 10 and he passes out. I've seen things like it in movies but I didn't know that anesthesia really worked like that--that fast, you know?

I have a lot more things I want to blog about, I just haven't had time yet. I still want to blog about our hospital stay (even though we've been home over a week now) and his port and about Isaac and Elizabeth too. It's all coming. Maybe this weekend I'll have more blog time.

Today I was just standing in the kitchen and I thought, "my son really has cancer." It's kind of hard to believe even though it's been two weeks.

Keep praying for us

Our days are long with lots of ups and downs. Thank you for your love and prayers.

Tuna Fish for Breakfast

This morning I asked Jacob what he wanted for breakfast.

"Tuna fish sandwich."

True story.

It was about 7:45 am and his brother and sister were still sleeping. I was in the bathroom doing my hair when he came in to tell me he was hungry. I lead him downstairs to make said sandwich when I discovered that he had already been downstairs and had already eaten two pieces of bread. Apparently he only came to get me when he couldn't make the tuna himself.

He followed his two slices of bread and full tuna sandwich with a bowl of Chex cereal, part of my breakfast skillet and an avocado. An hour later he had two bowls of fish crackers.

Keep in mind this boy has never been a big eater. Ever. I would even hesitate to call him an "eater," let alone a big eater. In the past meals have always involved bribery and sometimes outright force feedings.

But put a kid on steroids and--oh boy, look out! Seriously, I never thought I would see my Jacob eat like this. I did not know that steroids made people so hungry. Thursday evening he had two bowls of spaghetti and 3 pieces of lasagna. Three, people, three adult-size-servings of lasagna. The next morning he told me that he was thinking about Grandma's lasagna during the night.

Take a guess how many pancakes he ate Saturday morning for breakfast. Go ahead, guess...

Eight.

Scott typically eats four. Just to give you some idea of the size of these pancakes.

(Scott knows I'm blogging about this right now and he just said, "have you used the word 'ravenous' yet?")

This is just unbelievable. But we know it won't last. He'll only be on the steroid through the end of the month. (Dexamethasone is the name of the steroid, in case you're wondering--a few people have asked). But for now it's nice to see him eating so well, it makes me feel like he's not a sick, weak little boy. It does a mother's heart good to see her boy eat an entire box of gold-fish crackers in a day.

The steroid has other effects too. Heard of "roid rage" before? I hadn't until now. Major mood swings is what it amounts to. This is much more difficult to watch than the insatiable appetite. He just gets so mad sometimes. I try to just hold him and let him cry or whatever. And I remind myself it's not him, it's the drugs. But it's still hard. Sometimes I just have to walk away and bite my tongue. Normally this sort of behavior lands him in time-out. I've been advised that it will pass, and not to worry about it long-term.

This morning he also had a pretty bad headache. Resting and watching "Jake and the Never-land Pirates" seemed to help (thanks, Sandy for the DVD!) I also gave him some pain meds. He's had a bit of nausea too (when he's not incredibly hungry) and Saturday he did throw-up. Also very hard to watch. He'd just had a dose of chemo on Friday, so it wasn't unexpected but that doesn't really make it any easier.

Overall, it still feels like a roller-coaster. A great big one, with high highs and some really low lows. The kind of lows that make you ache. But I was telling some friends today that there is a new and refreshing sense of simplicity to my life now. I don't care about anything else except my family. My whole life is my kids, my husband and taking care of them. And hanging on to God. Nothing else matters right now and there is something really sweet about that.

Thank you again for your love and prayers. They mean more to me than I can say.

"How Can We Help?"

In the not so distant past, Sara and I have scratched our heads and scrolled through our contact lists in vain looking for a babysitter for a particular weekend. Now, if we actually took everyone up on their offers to watch our children, we could go out one night a week for the next decade before we'd ever have to pay a babysitter again! Most incredibly, there have been people whom we've never met offering to watch our kids if we need it! Who are you people? Thank you, thank you, thank you to all! In Sara's words, "You people are amazing!"

In the last week, dozens of kind, eager, compassionate people continue to ask such questions as, "How can we help?" "Is there anything that we can do for you?" "If you need anything, will you please, please let us know?" We are overwhelmed by such kindness and feel tremendously grateful to be surrounded by and related to so many stellar people. Of course we rarely have a good reply to such generous offers other than "thank you."

So, Sara and I have been thinking seriously about your questions because you continue to press us so sincerely. How can you help? What do we need? We have a few thoughts for you including the following:

• Faith. So many of you have told us that you are praying for Jacob and our family. Thank you! We feel stronger than we ought to be and more comforted and contented with our situation than we know we would be on our own. We attribute this, in large part, to your expressions of faith on our behalf--your prayers, your fasting, your putting our names in the temple, etc. We are sustained and strengthened by the exercise of your faith in our behalf and ask that this continue. Thank you.
  
• Money. Okay, so this is the topic that no provider for his family wants to admit very readily. Yet, I will honestly confess that Sara and I truly did not budget much money for hospital stays, surgeries, and chemotherapy when we sat down and went over our family budget last spring. It just never came up for some reason. On the one hand, we do have awesome medical insurance which helps immensely, no question. On the other hand, notwithstanding great insurance, after all is said and done with Jacob's chemotherapy in 3.5 years from now, we estimate that it will have cost us around $20,000 out of pocket. Some thoughtful people have already begun brainstorming fund raising ideas such as a 5k ("Jog for Jacob"), a community BBQ/auction in his name, or benefit concerts. What are your thoughts? If any of you have any experience organizing these type of events or have other ideas we'd love to chat :). Also, some people have asked if we have any kind of account set up for Jacob that funds can be donated to. So, we've created a PayPal account to which funds can be securely donated electronically by clicking the "donate" button on the right.
• Encouragement. Moral support. Checking in with how Jacob's doing and how everyone is holding up is terrific. Encouraging words, smiles, and cards are more helpful than you know. Good will, expressions of love, and true doctrine have a way of soothing a troubled parent's soul.

These are the thoughts that we have right now to try and answer your kind questions. We are grateful beyond measure for the love and service which has already been shown to our family. God bless you all for your every charitable reflex!

2 Nephi 2:1-2

1 And now, Jacob, I speak unto you: Thou art my first-born in the days of my tribulation in the wilderness. And behold, in thy childhood thou hast suffered afflictions and much sorrow....

2 Nevertheless, Jacob, my first-born in the wilderness, thou knowest the greatness of God; and he shall consecrate thine afflictions for thy gain.

I found this scripture a day or two before the diagnosis. It came as a result of study following a Relief Society lesson the previous Sunday.

Treatment

Once we knew Jacob’s complete diagnosis we met with the doctors to discuss treatment. Never in my life can I remember such information overload; nor do I remember ever trying so hard to understand and retain information. Truly, my brain hurt trying to comprehend it all. No college course I ever took compares to those two hours talking to the medical team. I had such an intense desire to understand everything they were saying about our son’s chemotherapy. I could see it in Scott too—the desire and the overload. By the end of our meeting I could tell his head was so full of information that I half expected it to come spilling out of his eyeballs.

We learned that his treatment will last about 3 ½ years. I’m used to the idea now, but it shocked me then. One doctor said, “Yeah, it’s a marathon.” I replied, “I’ve always wanted to run a marathon.”

His treatment has 5 phases. The first phase is called Induction. That’s where we are now. Five days into it, to be precise. Induction lasts 28 days. It’s the most intense and usually eradicates all the leukemia cells (well, all the ones that they can detect and they can detect a lot of them). We will go to “clinic” at Primary Childrens every Friday for these treatments. The medications are administered through an IV that goes right into a central port he has (I’ll do another post about the port). It takes a few hours so we just go in for half a day or so and then go home.

At home we manage his side-effects and give him daily doses of a steroid. No one really knows why the steroid makes the chemo work; they just know it doesn’t work as well without it. We also give him an antibiotic to prevent pneumonia, as well as an antacid, a laxative and pain medication and anti-nausea medication as needed. I think that’s everything. I’m not sure, but I think. Scott keeps giving me medication quizzes.

So far side effects have not really been a problem, at least not since coming home. So that's one day. But it was a good day! He was very happy and felt great. He was a little tired, but no more than normal.

I laughed as I typed that. What’s normal? I guess I mean before the diagnosis and the treatments began.

I know he won’t stay like this and that we will have some very bad days. But I am grateful for today. It makes my soul soar to see him play, laugh and smile—all of which he did today.

So, at the end of all of this can I have a "26.2" sticker for running my marathon? I want to put it on my van.

There's no place like home...

We came home from the hospital last night. It was wonderful!!

We thought that we would be discharged around 2 or 3pm. Turns out, it was more like 7pm but that's OK. It just took longer than everyone thought to do all that needed to be done. We had to talk to a lot of different people about what to do now that we're home. Then we needed to get all his meds, etc, etc.

We drove from the hospital to my parents house where Isaac & Elizabeth had been staying for the last 5 days. It was a wonderful reunion. Jacob lit up when he saw his brother and sister. Being together is good medicine (and costs a lot less than the other ones he's taking!)

The hour-long drive from Bountiful to Spanish Fork was so sweet and peaceful. We sang primary songs and eventually everyone fell asleep. Scott and I talked and reflected as we drove down I-15. It was quite the contrast to the very stressful drive up to Primary Childrens last Thursday.

At home we saw more evidences of all the people who love and care about us. There were big welcome home posters, presents and love notes all over the house. My sweet sister-in-laws Allie, Heidi, Morgan & Olivia came to super-sanitize Jacob's room and bathroom. Neighbors had cleaned and sanitized all the bedding. My house has never been so clean, seriously! We had left in such a crazy hurry and the house was a horrible mess, as I'm sure you can imagine. My dear neighbor Shaeli had come and cleaned it all up. She even put together a team to come finish painting my bathroom (a project I've been in the middle of since August!) Scott said he just wants to put a big neon flashing sign out on the lawn that says "THANK YOU EVERYONE!"

After reading the notes and feeling so loved we put the kids in bed. It was so sweet to just do our bedtime routine again. We read in The Book of Mormon and thanked the Lord for the wonderful blessing of being home and for all the love and prayers. I think I will always remember that simple but memorable night we put the kids to bed in our own house after this life-changing event.

The Best Time to Get Cancer Ever!

Jacob has the most common type of childhood cancer. Out of every one million children about 130 of them have cancer. Of those 130 children about 30% have leukemia--the #1 most common cancer in children. Of those 30% the most common type of leukemia is Acute Lymphoblastic Leukemia (A.L.L). The most common type of A.L.L. is Precursor B. This is what Jacob has. So he has the most common kind of the most common kind of leukemia, which is the most common kind of childhood cancer (you follow?). Being the most common it is the most studied, the most understood, and (our favorite part) the most curable. So, if you've got to pick a childhood cancer, A.L.L. precursor B is a fantastic choice.

Furthermore, an oncologist just told Sara and I this morning that the recovery rate for Jacob's type of childhood leukemia in the 1970s was between 5-10%. Now, it's between 85-95%. The advancement and development of the chemotherapy in just our lifetime makes it the most effective it has ever been ... ever!

So, our conclusion is that right now is the best time in the history of the world to get leukemia! This means that Jacob has the best kind of cancer during the best time to ever have cancer. That's a great combination and we're grateful.

How it began...

Low appetite. Distended belly. Occasional achy joints. Frequent fatigue. Fevers for no reason. These were the signals Jacob's body has been sending us the past several months trying to tell us that something is wrong. But none of these factors alone is alarming. Each of them is easily explained away as being somewhat on the "normal" side of childhood sicknesses and growing up. If we had taken him in much earlier the doctors tell us they most likely would not have detected it. They would probably have sent him home with some pain medicine and some advice about getting enough sleep.

But it was there. It has been for months. Lurking beyond detection. Churning within his bone marrow. Attacking his white blood cells. Dividing out of control. Leukemia.

On Wednesday, 28 September 2011, at around 4:30 pm Jacob began to cry uncontrollably because of a sudden pain in his wrists. Sara and I alternated between compassionate and consoling to frustrated and annoyed. Wrist rubs, ice packs, heat packs, ibuprofen, Tylenol. Nothing worked. 11:00 pm came and went. The crying continued. At this point we tried the "remedy" of ignoring him (maybe he'll get tired and stop if we don't acknowledge it). When that didn't work we turned to scolding, "Jacob! We know it hurts! But if you keep crying you're going to wake up your brother and sister and you're going to keep Mommy and Daddy awake! Can't you cry quieter!?!" (Still can't believe I said that one.) We all got very little sleep that night. I still remember steaming in bed as I listened to him around 5:00 am still crying loudly. Knowing he would not get any sympathy from us (which we now regret profoundly) he began to go to his bathroom sink and run his wrists under cold and then hot water about every 10-15 minutes consistently. He would then go back to his bed, cry, and then return to the soothing sink water.

At this point Sara and I were worn out and frustrated, yet something about him trying to help his own pain via sink water caused us both to feel some level of love and compassion. Finally, I invited him into our bed and I rubbed his wrists for a while until it was time for me to get ready for work. Exhausted I got up and got ready. At our morning family prayers I said to all, "None of us got a very good nights sleep last night, did we? That means I need Jacob and Isaac to be extra big helpers for mommy today, okay? She is very tired and we are all cranky." We then prayed. After the prayer Jacob lingered and said to me as tears rolled down his cheeks, "I'm sorry that I made it so that we didn't sleep very good last night." My heart melted. Looking back now, I realize how unreasonable and ridiculous we had been--"Hey, stop crying because of your cancer! Can't you see we're trying to get some sleep! Tough it out, it's just leukemia!" But we didn't know. We didn't know that leukemia was causing tremendous amounts of extra white blood cells to crowd into his joints until it caused such intense and excruciating pressure as to be unbearable. We just didn't know.

"I'm sorry that I made it so that we didn't sleep very good last night." This echoes in my mind and moves me to tears now as I think of how innocent he was through it all and how frustrated I was with him. Oh, that I could have that night over again, knowing what I know now! I promise to be a better dad for him, and for Isaac, and for Elizabeth, forever!

Needless to say Jacob's condition had now manifested itself in full fury. Now it was detectable. Late Thursday morning Sara took him to our pediatrician who, upon looking at Jacob's blood count, told her to pack up and get to Primary Children's Hospital quickly. That afternoon we checked into the emergency room and after a very slow 36 hours, filled with blood tests, morphine, sedation, a bone marrow biopsy, and many tears, we learned that Jacob has Acute Lymphocytic Leukemia (aka A.L.L), protocol B. This means he has cancer in some of his white blood cells.

The good news is that there is a 85-95% recovery rate in children with A.L.L. It is highly curable. The concerning news is that Jacob must travel for 3.5 years through the crucible of chemotherapy to gain this healing cure. The purpose of this blog is to document Jacob's journey to complete healing and recovery. We do not anticipate filling this blog with sterile and clinically detached details of dates and events, rather we hope it will serve as an important piece of documented family history, a repository for our personal reflections and inner-journey as his parents, and a welcome place for those who care about Jacob to leave comments of love and encouragement.