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!!

Playing

Today has been, I think, Jacob’s best day in over a month—since before his diagnosis. As I write this, he is on the couch with Scott laughing and giggling! It’s so awesome! For the last five weeks he’s just been too miserable to do anything; he would hardly let anyone touch him—now Scott is tickling him! I love this!

Part of the reason is that he slept all the way through the night last night (heaven for me!) He has only done that one other night since this all started (that was the first time we came home from the hospital and he probably hadn’t slept in a week before that).

Today he played with his little brother. It was wonderful. I got to say these words, and I’ve never been more happy to say them: “Boys, play more quietly, your sister’s sleeping.” They did wake her up, by the way, but I didn’t care one bit!

Seriously, I wish that you could hear Jacob right now. He sounds so happy! And it makes me so happy.

Playing with—you guessed it—Star Wars Legos.

As I was thinking about today and what a good day it’s been, I realized that it’s fast Sunday. I believe that one of the reasons that Jacob is feeling so good today is that many of our family and friends are fasting for us today. It has strengthened my testimony of the blessings that come from fasting to see this happy little boy today. Just last night I wrote in my journal, “I miss my little boy,” and today I got him back. Thank you, again, for your love, faith and prayers.

Birthday Package

When we got home from the hospital we found a birthday package for Jacob from his kindergarten class. It made him so happy. This is the birthday crown they sent; it really made his day (night)! It may not show in the photo, but he really was excited.

Came for Fever, Stayed for Constipation

We are home from the hospital! We came home Thursday, hooray! 

Sorry to leave you with a bit of a cliffhanger there…now for the rest of the story: When last I posted we were trying to figure out why Jacob’s stomach hurt so much, it had started Sunday (or maybe earlier) but his pain had escalated while we were in the hospital. At one point he was on morphine and oxycodone (pain killers) alternating every 2 hours. And he’d still be in pain; he’d wake up in the night screaming because his tummy hurt so much. The doctors ran every possible test and looked at everything. They checked for a blood clot, reverse blood flow in the liver, kidney stones, air in the lining of his intestine, appendicitis, pancreatitis, a possible gallbladder problem…all of which came up negative. Relieving and frustrating at the same time.

Jacob & Scott playing ‘Star Wars’ on the X-box in the hospital. That’s a hot pack on Jacob’s tummy, it helped with the pain.

To investigate these possible problems Jacob had both an ultrasound and an x-ray (well, two ultrasounds—regular and Doppler, and three x-rays, to be precise).  The x-rays showed a lot of stool in his intestine (yes, this is another post about poop. I’m used to it now, are you?) We were surprised given that he had such severe diarrhea for the last month (see previous posts where we thought he had a tummy bug). Finally it was concluded that Jacob is constipated. And he was getting backed up while he was still having the diarrhea. I did not know that that was possible. Think of a clog in the drain of your sink; the water can still go around it until it just gets so big that the drain gets plugged. Same thing can happen to a persons insides. And it was caused by two different medications he was taking (as best we can tell). The Vincristine (chemo med) was plugging him up while Dexamethasone (steroid) was causing diarrhea. We had a laxative prescribed for him when he first started the Vincristine, but we stopped because he had such bad diarrhea. Seemed logical, right? Don’t need a laxative when you’ve got diarrhea.

And so the answer to the big stomach-pain mystery: constipation. The thing that had the doctors scratching their heads wondering what could be causing this severe pain. Yep, it’s good, old-fashioned, run-of-the-mill, don’t-need-surgery, constipation. We ruled out every other possibility. Oh we also learned that he has rhino-virus too. Never heard of it? You’ve had it, it’s just the fancy way of saying ‘common cold.’

Nothing heals quite like kisses from little sister. She was so excited to see him.

As I was talking with one of the doctors, Dr. Kaza, she said that she had just been so concerned, she refused to miss anything or write it off as simply constipation. But turns out, that was it. And I’m grateful that she worked so hard and explored every possibility—those are the kind of people you want caring for and treating your kids, right? She told me she was thinking about Jacob and trying to figure out his pain when she went home at night. As a parent, there is nothing more comforting to hear when you’re child’s in pain. I’m really grateful for Primary Children’s Hospital and their staff.

So, what began with the ER and an ambulance ended with constipation and the common cold. At any rate, we are so glad to be home again. Jacob is on a laxative and two stool softeners (“mushers and pushers” as one nurse said) and they seem to be doing the trick. It’s a slow process, but I think Jacob is getting cleaned out and beginning to feel better. Which is good, because tomorrow he starts phase two of chemotherapy. Here we go, I guess…

Update (3 ER Trips in One Weekend)

We have had a very eventful few days. ER visits, Jacob's birthday, the 5K and now another hospital stay. The short of the long is this: he's got some pain in his abdomen, and something's going on (maybe with his liver?) that isn't quite normal. At the moment we're here at Primary Children's Hospital. We've been here 2 nights already and will likely stay another. We are waiting on test results and the doc's are putting their heads together trying to figure out what exactly is happening. When we know more, we'll post again. That's the quick recap.

If you'd like to read more I'm also going to detail the events since last Thursday, as much for my sake and my record-keeping as for your information. I'm sorry if it's difficult to follow; I'm not really attempting to write well, just trying to get all the information together. And it's long, sorry.

Thursday, Oct. 27th
Went to the ER at Primary Children's because the whites of Jacob's eyes were turning yellow. Waited in the ER until about 3 in the morning then we were moved upstairs to the ICS floor (ICS means 'immune-compromised services' it's the cancer floor where we stayed when Jacob was first diagnosed).
We stayed in the hospital until Friday afternoon. Ruled out a blood clot, put him on a medication to help his liver function better.

Emergency Room at Primary Children's

Playing 'Angry Birds' while waiting in the ER


Jacob finally fell asleep about two in the morning, we're still in the ER
(Scott was sleeping on the floor at the time)

Friday, Oct. 28th Jacob's 6th Birthday
Jacob had a procedure in the morning (this was scheduled prior to our ER visit). He had another bone marrow aspirate (to see how well chemo is working) and they put a dose of meth-a-trex-ate in his spine (chemo drug and I have no idea how to spell it). Then Jacob slept most of the afternoon (it had been a long night). All the nursing staff put on funny hats and sang "Happy Birthday."

Sleeping in the chair in the hospital (the string is a balloon for his b-day)

Riding in the wagon out to the car to go home. He wears the mask going through the hospital.

After he was discharged we went to PF Chang's for dinner, as per Jacob's request. Panda Express has been a favorite of late, so I told him that PF Chang's is even better. Naturally that's what he wanted for his B-day dinner. In an effort to make his birthday special and to have some degree of normalcy, we got take-out and had a picnic in the back of the car. Guests included Mom, Dad, Jacob, Isaac and Elizabeth. It was fun, but a little tricky, as I'm sure you can imagine; Chinese food in the back of the car with a toddler is messy, to say the least. It was a birthday dinner we won't forget (and one we hope we don't have to repeat).

Once we got home (around 9pm) Jacob wanted to open his present. Once he opened his Star Wars Legos he wanted to put them together. Scott and I were tired, Jacob said he could stay up and put them together alone, which he did! He stayed up until about 2:30am putting his new T-6 Shuttle together :) Whatever the birthday boy wants, right?

Putting together Legos.

Saturday, Oct. 29th
Early in the morning we put on our warm winter clothes and went to the 5K at Spanish Fork High School. It was a wonderful event (pictures and a full report to come). It warmed our hearts to see all the people who love us and who came out to help. The rest of the day we rested and finished putting the Legos together.

Sunday, Oct. 30th
Mostly uneventful--in the morning at least. Scott and I took turns going to church. Jacob laid on the couch most of the day. He did put together another Lego set. After dinner he was getting uncomfortable, complaining of his stomach hurting and a general achy-ness. He said his bones hurt. I gave him pain medication at 5:30pm and noticed he felt warm-ish. I took his temperature. It was 100.3. This is concerning. Our instructions were to wait an hour and take his temperature again.

We waited. Put Isaac and Ellie in their jammies, did the dishes. 6:30 came and it was time to take Jacob's temperature again. 102.8. This is bad. Scott said, "I think that means we're getting in the car right now."

He was right.

I called a friend to take Isaac and El, we got in the car and drove to our local ER at Mountain View Hospital (Primary Children's is an hour away). At the ER they took his blood and started an antibiotic. A major concern for chemo kids is infection. If they have a fever over 101 it's an automatic antibiotic--and a strong one.

ER at Mountain View Hospital, playing 'Angry Birds.'

Of course the ER doctor was in contact with Primary's, and they decided to transfer him up. He needed a blood transfusion, his heart rate was high and he just needed to be at Primary's. So Jacob got his first ride in an ambulance. No lights, but I did notice they were going faster than the posted 55 MPH through the I-15 construction. :)

Riding in Ambulance #91

We arrived at Primary Children's ER about 11pm and spent a few hours there. Jacob was very hungry at this point (not to mention upset, tired and uncomfortable) he really wanted some Fritos chips. The sweet ER nurses and techs scoured the hospital for Fritos. Someone even said they called the University Hospital looking for some. No luck, he had to settle for barbeque chips. One of the doctors came in and said, "you are the only patient I've ever seen in shock protocol eating barbeque chips!" (I, of course, asked what 'shock protocol' meant, and I guess it's that his heart rate was so high and some of his other vitals were concerning).

ER at Primary Children's--finally some Fritos!

Because of his high heart rate as well as another test that came back a little high Jacob was sent up to PICU (Pediatric Intensive Care Unit). We stayed there the rest of the night while Jacob got his blood transfusion.

Monday, Oct. 31st
Jacob wanted Spaghetti for breakfast, which we promptly ordered at 7am. Stayed in the PICU until after lunch. His heart rate and lactate tests (no idea how to spell that one, but that's what it sounds like...it has nothing to do with milk) both came down so we could move back to ICS. The pain in Jacob's stomach has worsened. He was on morphine and oxycodone through the night.

Jacob with his new Angry Bird, a present for being so brave.
The bird's name is "Fluff."

Tuesday, Nov. 1st
At 9am this morning Jacob had an ultrasound to see what's going on in his belly. It was really painful to just have the tech move the tool around on his tummy because he is so sensitive. He screamed through the first half of the ultrasound. Then the morphine kicked in and he fell into a sleep, sort of. At least he calmed down enough to finish the ultrasound.

And now we are just waiting. Waiting to see what the ultrasound showed. There is an entire team of doctors trying to figure out just what is going on here. It's not uncommon for the liver to get a little 'stressed-out' during chemotherapy, but this much pain is unusual. We have the oncologists and GI doctors putting their heads together to get to the bottom of this. (I think 'GI' is gastrointestinal, but I don't know for sure. Scott here: I think it stands for "General Infantry," as in "GI Joe." Pretty sure they're military medical doctors. Man! they're bringing in the big guns for this kid!)

So, that's the update. We're just waiting right now. Jacob and Scott are playing Star Wars Legos on the X-Box. Jacob has also passed the time playing 'Angry Birds.' :)

Thank you so much for your thoughts and prayers. It means so much to us.