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.