Friday, July 29, 2011

Round 3: almost over!

Jacob's ANC is 100 today!!!

Let me explain what this means to everyone who isn't familiar with blood "counts".  ANC is a type of white blood cell and you may know from science class that white blood cells are the part of our immune system that goes around our bodies battling off bacterias and infections.  There's a whole bunch of different types of white blood cells, but the ANC is the one that we watch the closest for Jacob.  The doctors call these the "first line of defense". So, without them...he can get sick really easily.  The exciting part is that since his marrow is starting to make this little army of ANC, he will be able to come home again soon!

The doctor wants to watch him through the weekend to be sure that his little army is multiplying enough to stay keep up the fight and multiply all at the same time.  As he makes these cells, they immediately get to work rushing in to anywhere he has infection or sores or anything wrong in his body.  This can keep the counts low for a little while and even make them go down a bit before they come back up. So, hopefully he'll be clear by Monday and have enough of those little soldiers to let him go outside into the big wide world. :)

Tuesday, July 26, 2011

Balding at 13.

I'll never forget the day we shaved off Jacob's full head of hair. It was pretty long at the time and still very thick.  It had not even started thinning or falling out at all, but they told us it would only take a week or so before it would and it had already been about 10 days or so I think.  Jacob didn't want it to make a mess all over his bed and pillows so we thought it would be better to just shave it all off.  Since he's a boy and has shaved his head before for football and wrestling, this wasn't much of a big deal to him and he figured it would be easier and feel good anyway.  Well, it was hard for me...I tried to just think of it as another haircut, but I couldn't do it.  It just made everything so real.  As I started buzzing away at it and watched it fall to the floor and the patches grew around his perfectly shaped head, I knew this time, it wasn't coming back for a very long time. No matter what we tried to do, it was going to come off and it was going to stay gone...Jacob has cancer. I cried as I buzzed away his hair, but tried to be quiet because I just didn't want him to know I was crying.  I cried so much that month. I know Jacob was getting tired of seeing me cry.  He is so strong, so confident, so brave and well, I'm just not all those things...but he is teaching me alot.
We didn't take pictures that day, probably because Dad was the one who could have taken them and probably looking at the scene of me crying as I buzzed away his hair wasn't a scene that he or Jacob wanted to remember.
So, the pictures I will share of this memory are these... It turns out that a whole bunch of his friends shaved their heads for him to show their support.  I was absolutely awestruck at the love these kids have for him. 
This is Aubrey...yes, "Aubrey" SHE is a girl and she is Jacob's cousin in California!  So, she shaved her head completely bald and donated her hair to Locks of Love in honor of Jacob.  Aubrey is 13 years old, but she was just 12 when this picture was taken.  She has the same birthday as Jacob - 1 year younger.  She was Jacob's first birthday present! She looks a lot like her brothers with her head shaved.  What is so brave about this girl is that she doesn't go to the same school with Jacob where a whole bunch of other kids did this and everyone knew why they were doing it.  She was the only girl in her school to do it and it had to be a really big deal!  I love you Aubrey!!!

See that kid on the right with the patch of hair growing out of the side of his head?  That is Tyler Owen.  I guess he didn't think it would be wierd enough to just shave his head because he's had it shaved before too.  He left a funky little patch on the side in the shape of two letters... J.W.

This is Chase Shutt.  He had another way to make that haircut truly honor Jacob so everyone would know why he was bald.  I think you can see the letters of Jacob's name shaved into the back of his head!  Thank you Chase!

And this is another friend, Gavin.  He did an awesome job getting that head as smooth as a true chemo kid! He must have used a razor to get it that close! ...lookin' good :)

Joey also buzzed  his head and so did Dad.  Josh's head is still shaved.  He keeps it bald as he can whenever it starts to grow a bit, he just shaves it off again.  I think he plans to keep that up until Jacob's grows back in.

Finally, Jericho just had to shave his too the first time he saw Jacob after his hair came out.  He hadn't seen him in over a month and on Mother's day, the whole family finally got to come and see him.  Jericho went straight home after that and asked Daddy to cut his hair "just like Jacob's".  Daddy didn't want him to be totally bald so he just buzzed it down to about 1/4 inch.  Jericho looked in the mirror and felt his head with his little hands and said, "nooooo, I want it just like Jacob's! It's not like Jacob's"! 

When it finally did start falling out, this is what it did.  The hair came out in little patches and the patches just grew bigger. The back of his head went bald first because it was rubbing against his pillow.  He found that he could just grab some with his fingertips and it would come out without hurting at all.  So, he tried sticking some medical tape to his head and ripping it off.  That worked and it came out in strips!  He asked me to help and by now I wasn't such a big crybaby...we laughed and laughed as we made stripes all over his head with the tape.  Where's the ducktape when you need it?

Eventually, it all came out and he was officially bald at the ripe old age of 13. tell more of the story.

We have taken a lot of pictures throughout Jacob's battle and there are more of them at home.  Eventually, I hope to have them all posted here on his blog.  I'll start by just picking some and sharing some of the story.  I can't promise that they will be in order since they are not all in one place so I'll try to add a date from when they were taken.

This one was taken on April 8th, the day Jacob was diagnosed. He's got a little oxygen monitor on his finger and he's actually receiving his first unit of blood through a peripheral IV.  Dad took this picture with his phone and I'm so grateful that he did.  It shows so much...he really didn't look that sick, did he? It's crazy for me to look at this and think about the war that was going on inside his body...trying to kill him.

And this one was taken the very next day. From these two pictures, you can understand why Jacob said, "they made me sick!" He felt sicker after coming to the hospital than he did going in...and he's right.  The crazy thing about cancer is that they have to make you sicker in order to get you just doesn't make sense.  So, in this picture you can see his new "equipment" installed into his chest.  This was right after his first surgery when they placed his central "broviac" line, did his first bone marrow aspirate and lumbar pucture.  His first dose of chemotherapy went directly into his spinal fluid.  The whole thing made him very sick, very fast and he woke up with a horrible headache that lasted for the whole month.  Initially, it was a spinal headache caused from the LP and probably an imbalance of his spinal fluid.  He had to lay down flat on his back as much as possible for the first week after that. He had four more LP's that round, so he never really got a chance to get better and the headaches were almost unbearable for him.

Waiting for counts...waiting for answers...waiting to get better

Today is 21 days of round three.  It's too early to start watching Jacob's counts every morning, hoping that his white blood cells are going to come back, but I just can't help it.  I know it will be at least another week before his body starts making the little ANC blood cells that will pull him out of this pit that he's in and allow him to go outside his tiny little room.  He's been confined in this room now for two whole weeks, but last month his counts stayed at zero for 21 days. They say that it takes a little longer with each round of chemo for them to recover because the bone marrow gets "tired". So, I'm trying so hard not to think about it and just concentrate on getting him through each day, keeping him occupied and comfortable and praying that he doesn't get sick. 

Right now, my biggest fear is for his eyes and the pressure that he has in his head.  They did an LP for him on Saturday and drained off some of his spinal fluid which helped his headaches for a day, but they came back on sunday.  The headaches are better again now, but his vision has not improved.  I was really hopeful that as the headaches got better, it would mean that the pressure in there is less and by relieving the pressure, his vision would improve. I'm so scared for his eyes and I hope that anyone reading this will please pray specifically for his eyes to recover from all of this and for his vision to be restored.

Dr. Barnette just left a few minutes ago after talking to me for a while about what he proposes that we do.  He decided to take Jacob off of the Septra medication because there is a slight chance that it is contributing to the intra-cranial pressure.  (It is one of the rare side affects of Septra) He is changing the medication to a new one called Peptamidine which essentially does the same thing as Septra.  The really cool thing about Peptamidine is that he will only have to take it once per month to have the same protection. These antibiotics protect Jacob from a specific type of pnumonia that he is very susceptible to because of his chemotherapy.  When his counts are low like they are now, he is susceptable to basically everything, but there are a few bugs that they know to be super common with this treatment so they treat for those bugs "Prophylactically" (haha...there's that big word again).  Jacob will be really glad to not have to take septra anymore because that pill is HUGE! It gets stuck in his throat every time he takes it, even when I cut it in half for him.

Monday, July 25, 2011

Better Days...

Jacob had a better day today. Not much to report.  He started his new medication called Topomax (if you have migraines or ever been treated for seizures, maybe you know this one) They chose it because it is supposed to be able to relieve "inter-cranial pressure".  Jacob's pressure seems to be caused by an excess of spinal fluid and it might be the reason for his headaches and swollen optic nerves.  I'm really hopeful for this medicine to work.  He had relief from his headaches for about a day after the LP since they drained off some of the excess spinal fluid, but this afternoon it seems they have returned again...bummer!  So, I'm really hoping that this new medicine will make a difference and begin to solve the problem. 

Since that's all the news for today, I thought I'd share some of the good stuff we got to do last time he was home from the hospital and post some pictures.  Jacob was home from June 21 to July 5, two whole weeks this time! We tried to do as much fun stuff as possible with him during that time although for the first week, we were still having to move some things and clean up at the old house.  That was so hard to have to be hauling stuff off for the dump and the thrift store instead of being able to spend time with him. It was such a relief when the job was finally done and we could just enjoy some time as a family together.

One of Jacob's best friends is Tom.  His family has a "cabin" in Midway that they share for family vacations with the rest of their family members.  They have been trying to get us to be able to spend a weekend with them for a long time and ever since Jacob was diagnosed we have been hoping that we could make it happen since he has been there with Toms family before and it is one of his favorite places to be in Utah. Since Jacob was in the hospital a little longer than expected last round, the timing didn't quite work as we had hoped, but we did get to go up for three days and 2 nights.  It was amazing and just being there made me so happy.  Having all of our family together and just being able to relax away from the chaos of moving and the stress of hospital life was so healing for all of us.  Jacob got to spend those days with one of his best friends, go fishing and even go shooting with his Dad. We made him some of his favorite meals and Linda taught me how to make buttermilk syrup for our french toast breakfast....yum! 
POST PICTURES HERE - that reminder is for me..haha.  I have a whole bunch of great pics from that weekend, but they are all saved on my hard drive at home.  Sorry for the wait!

On the Sunday before the 4th of July, we had a truly wonderful day.  Jacob had been to the clinic on the Thursday before and we found out that his blood counts were almost completely normal! He was just on the low side of normal for everything, but better than they had ever been since the beginning of his battle with leukemia. It was so nice to be able to relax a bit and let him just enjoy a few things.  One thing we were told when he was diagnosed is that he probably wouldn't be able to go to church or school until he was through this.  He has had the sacrament brought to him at the hospital and at home every Sunday but we miss having him with us at church.  On that Sunday, we decided it would be safe for him to go.  He actually got to pass the sacrament with his quorum of young men and he was sustained and set apart for his new priesthood status of a Teacher.  Everyone at church was so glad to see him and it was such a treat for us to "show off" our strong young man and let everyone see how the Lord is working in his life and healing him.  We just stayed for sacrament and then went home though.  We didn't want to overdo it. 

After church we packed a little picnic and headed up to Park City for the afternoon.  We set out some blankets and had a wonderful time just hanging out together.  Noelle & Ryan brought a Frisbee and a volleyball. We also played "the hand slappin' game" and had an arm wrestling match.  We were surprised to find out that Jacob can still take down everyone in the family -including me- except for his Dad and Ryan! I really did try to beat him and there was no way.  Noelle tried with two hands and didn't have a chance! This time, I've got a few fun pictures to share...
First, he took down Noelle...

 She wanted a re-match...
                                     ....and then decided to cheat with two hands just to make the match more even.    -she still lost.
 Joey challenged mom and Jericho helped by making my muscles look bigger.  I have to say, that kid put up a fight...he is pretty unbelievably strong for 9 years old!
 After quite the battle, I took him down... :)  (I think there's a scene like this in our favorite TV show, Malcolm in the Middle - the mom tells the boys that they can have their way if they can beat her in an arm wrestle and she beats them all..haha - I guess you're out of luck still, Joey) ...but not for long!
 Joshua was fun, just look at that face.  He wants to beat me soooo bad!
 We decided it wasn't fair cuz Joshua is left handed, so we reversed the match and I tried him left handed.
...I still beat him!  Yesssss!

 Noelle and I just had to give it a try...Just look at Jacob's smile back there in the background, he got such a kick out of this.
 Jacob and Jericho are just laughing their heads off watching this match... So are Noelle and I.
 Well, since all the other boys had their chance. Jacob had to give me a go.  I thought I might have a chance considering the kid's got cancer right??? Now way, he still took me down in no time flat! ...and I was trying, I promise.
 I just had to add this one of Noelle and Ryan.  Did you really think you had a chance Noelle? She's got both hands up there, ready to take him.  Just look at the confidence in her face...haha.

We just thought it would be fun to get this shot.  Look at all those feet! This gives you an idea of the battles I have had about putting shoes away.  The shoes in our family take over the your step!
This one is really worth enlarging on your screen. I think if you click or double click it will get bigger.  The expressions on everyone's face is just priceless here. 

And finally... Jacob and Jericho.  Having a brotherly moment together.

Saturday, July 23, 2011

Total turnaround

To look at him now, you wouldn't believe all that he went through yesterday. He just never ceases to amaze me. As I said when all this began - and all his life, he's truly the toughest kid I know.  Yesterday morning, the nurse kept prepping me that he would likely be headed to the PICU.  Nope, he didn't want to go there. Didn't want to pack up & re-set up his PS-3 and didn't want to lose his room with the HDTV! So, we stayed upstairs. Good job Jacob!

He is much better tonight.  The morning started out busy, but the rest of the day was a breeze and when I got back from Jericho's birthday party, he was sitting up in bed with his table parked in front of him and the big bright overhead light ON! (He never lets anyone turn on that one. It lights up like an operating room and he's been really sensitive to bright lights) Well, he needed good lighting to work on his 1966 Mustang model with John.  They had parts all over the place and they were watching "Top Gear".   ...boys and their toys.  John is really good at keeping Jacob busy and occupied.  Every time I come when they are up here together, Jacob is up and doing something...even if it's just playing "Call of Duty", he's engaged in something...keeping his mind off all that he's going through. 
That's pretty much all he did for the rest of the day. He worked on his car and watched television shows about cars.

About the morning... well, that was a different story.  He was sleeping so good this morning and he actually got a pretty good night's sleep last night.  I got up and tried bracing myself for the days events. I wasn't really over the anxiety from the day before so I was still emotional. (I'm really a sissy by the way) When I talked to the nurse about Jacob's night and the things that were worrying me, I started crying again...dang it!-I hate when that happens. Jacob was scheduled for an LP (lumbar puncture/back poke) at 12:00.  I just wasn't comfortable letting them put Jacob to sleep for the procedure, but I knew they had to do it. Dr. Wright and Dr. Abraham came to talk to me about the procedure. She explained that they didn't want to put him under anesthesia either and proposed that we give him some medicine that would relax him and make him forget all about it. After my usual list of questions (I always ask a lot of questions...drives Jacob crazy), I consented for them to do it.  Well, they were wrong about forgetting all about it and being comfortable with the relaxing drug.  He was awake all the way through it and remembers every detail.  Very painful and very scary for him.

He went through the procedure just fine and I got to watch the whole thing as they checked the pressure in his spinal fluid, drained some of it to  send to the lab and then took some more to relieve pressure.  I'm really getting an education around here. 

The results of the LP showed no leukemia cells and no bacteria. The only thing they did find is that the pressure was too high and that could be the cause of his headaches and trouble with his eyes. Normal pressure is around 20-22.  His was 37.  Taking some of the pressure off, did what they had hoped and his headaches have been much better this afternoon.

Friday, July 22, 2011


We are 17 days in to round three.  Since the rest of this post is really scary and it sounds like a lot of dangerous complications and tests, I'm going to start by relieving you and say that Jacob is looking good right now.  He's finally up, watching TV and he's eating Pringles (not my first choice for his nutrition, but not worth the battle either) His fever is down and his blood pressure is great now. Up until today, this round has had the least complications and been the smoothest one. Each day, I have been thanking God that things were going well and asking for His continued peace through this treatment. Last week, I went home for a few days. John spent most of the time with Jacob and Josh spent a few nights to so I could be home.  He was feeling good and when he's feeling good, well his biggest problem becomes boredom.  I got the feeling that Dad and John do a better job of entertaining Jacob with "guy stuff".  John is especially good at keeping Jacob busy playing "Call of Duty" on his PS3.  I knew that things could change quickly for Jacob with his counts at zero and I know that when he goes to transplant next month, I won't want to leave his, I did my best to stay home and be with the other boys, get settled in to our new home and read & study all I could to prepare for the Bone Marrow Transplant.

Well, everything did change quickly last night and I came up to the hospital to see him and check on all that had been going on for the day.  Jacob had spiked a fever yesterday, and he was having some very bad headaches. Although he has had headaches all along, he's been able to manage them pretty well so this was unsettling to me and he asked me to stay for a while. Well, anytime Jacob gets a fever, they have to take some blood from his line and send it off to the lab for cultures. About 30 minutes after I arrived, the nurse came in with three 1 liter bags of fluid for him and let me know that his blood had grown some "cultures" (bacteria) and he had an infection in his line. This means that he has an infection throughout his bloodstream and that is very dangerous.  Once again, I listened as they spit out one of those scary words that triggers little waves of panic. This time the word was "sepsis".  -ugh...not good.

Since he was already running a fever and his blood pressure had already lowered, the extra fluids were to give him a "bolus" -don't ya just love all the new vocabulary words?-  A bolus is when they pump as much fluid as they can safely give as fast as they can get it into your body. The hope is that the extra fluid will add pressure to his circulatory system increasing his blood pressure.  This got to be a bit complicated because Jacob's line has not been working right for a while and it just didn't let the fluids in as fast as she wanted them to go. They had to get a pressurizing bag that basically just pushes the fluids through because his line kept stopping the pumps. It took a lot longer than they wanted it to, but it worked and his blood pressure started looking better quickly.

We suspected that the infection started in his line and with it working so badly, there was a lot of talk about the possibility of having to remove his central line and put in a new one before transplant.  This will most certainly happen, but we don't want to have to do that procedure while he is so sick and while his counts are at zero. Certainly, don't want to do it if he has bacteria everywhere.

We tried to sleep, but it was a very long night.  The nurse was in to check on him and do vitals about every 1/2 hour.  I'm sure Jacob didn't get any sleep at all. I slept maybe an hour or two, but there were a lot of interruptions and I was worried about him all night.  At 6:00 AM, the nurse came over and woke me up to say that things had gotten worse and she had called the resident and the head nurse practitioner.  He had another fever, his blood pressure was going bad again (142/38 - this time it was the big gap between the top and bottom numbers and how low the bottom number had gone) and now he was needing oxygen, unable to get enough on his own.  She also said that he was a little disoriented the last time she evaluated him and his pulse was "bounding" and something about his blood return being too fast or too slow...both bad. His hands were clammy, he was shivering cold as his temperature rose and he was exhausted.  They went straight to work getting him another bolus of fluid going and started on another new antibiotic. He now has a total of 5 different antibiotics working to cover just about every possible type of bacteria. 
- Septra
- Fortaz
- Vancomyacin
- Voriconazole
- Gentamiacin
In addition to those he gets,
- Ben/Phen (Benadryl & Phenegren mix for nausea)
- Kytril (for nausea)
- Tylenol (for the fever)
- Oxycodone (for pain & headaches)
- Dilauded (for pain when Oxy isn't enough)
- Glutamine (for mouth sores)
Also on the menu for today was a unit of blood and one of platelets. Another order of platelets will probably be on the agenda for tomorrow morning too.

Back to the day's complications...while she was pumping Jacob full of fluids and checking his vitals about every 15 minutes, a whole crew of doctors came in to talk to us.  They transferred him from the "chemo team" over to the "Layhe team" (dunno if I spelled that sounds like "lay-hee") This happens anytime a chemo treatment patient gets a fever or has complications...then they say he is "sick" and goes back to the doctor side of care rather than the nursing side.  (Still it's the nurses that do all the care for's just the doctors making bigger decisions for him now) 

The cultures had grown bacteria in just 12 hours and that means there was a lot of a bacterium in there.  They studied the bacteria and determined that it was called "strep veridim".  Apparently, this particular bacterium is the one they fear and one of the big reasons that Jacob has to stay in the hospital until his counts recover completely.  They watch for signs of these bacteria and if the signs begin, they treat for it even before they know for sure just because it is so common and they know it's a possibility. Also, it's best when they catch it really early. 
This is just what they did for Jacob and by the time they confirmed the type of infection, he had already been on the antibiotic to fight it for 24 hours.  This was a really good thing and probably the reason that he is looking better tonight as I write this! 

I learned that some of the treatments cause more symptoms and other complications.  The fluid bolus may have caused extra fluids to collect in his lungs because his oxygen levels were dropping now.  They ordered an x-ray on his lungs because he was not able to get enough oxygen on his own and needed a nasal cannula with 1 liter of oxygen to keep his saturation levels up enough. X-ray came back with no problems and his lungs were clear. 
They also did a urinalysis to check for a bladder infection -and that was clear.

By now, Jacob had told them that he had developed a blind spot in his left eye and the right eye still had a blind spot.  That, plus the headaches was enough to call the Moran Eye Center to get an eye specialist over for an exam.  They had to dilate his eyes again (he hates that!) and did an exam looking straight back in to his optic nerve.  Well, this test showed that his optic nerves are both quite swollen, enough to cause the blind spots.  As the pressure builds and the optic nerve swells, an area develops in the eye that you can't see through.  If the pressure goes down, then the blind spot should go away, but now we needed answers as to why he would have swollen optic nerves.  Well, the scary thing is that it could mean he had "intracranial pressure" (another great vocabulary word)
So...about 30 minutes later, the doctor came back to tell us we were going for a "walk" -to the CT scanner.  They did a CT scan to look for any possible swelling or hemorrhaging on his brain.  This was a scary moment while we all dropped everything, put him in a wheelchair and transferred his IV pole stuff to a new transport pole and hurried off to radiology.
The CT scan didn't show any swelling or fluid buildup or anything abnormal...whew!

So, we went back up to our home on the 4th floor for...
Another fever, blood pressure drop and fluid bolus number three for the day.

Since the CT didn't give us any answers, the docs were back soon to take us back down for an MRI.  The MRI machine is able to detect more details so they wanted to take another more thorough look at his head.  This also came back normal at first glance. The radiologist will be taking a closer look tonight and get back to us in the morning if he finds anything.

Now the last thing they plan to do to get to the bottom of this is to do another LP (Lumbar Puncture...oh, there's another vocabulary word! It's a fancy word for: "back poke") With that poke in the morning, they will take a little fluid out of his spinal column which will relieve some pressure and hopefully help the optic nerve swelling and possibly relieve the headaches.  They will also take send the fluid to the lab to check it for infection and leukemia cells.  They don't expect to find either of those things since his spinal fluid has been clear since the beginning of this battle, but they have to check just to be sure.  One of the things they will look for is meningitis-another thing they don't expect to find, but have to look for...just to be sure.

I love how they always check everything "just to be sure" ...somehow, I'm still uneasy about all this and I feel like we don't have any "sure" answers particularly for the headaches and blind spots and optic nerve swelling still after all those tests done today.  …and that feels pretty darn serious to me. But, we do know the source of the infection and the good news is that his last blood culture was done exactly 12 hours ago and nothing grew this time...yay! This means that the antibiotic cocktail they gave him is working. Hooray for antibiotics and hooray for prophylactic treatment. Hah! I just had to end this post with another big vocabulary word. If you are the first one to reply to this post with the correct definition for "prophylactic", I will send you an orange bracelet with Jacob's name on it that you can wear to show your brilliant supportive love for him! (...Cancer moms, I KNOW that you know this word, so I would love to give you one of Jacob's bracelets just for being one of my heroes :) Just come see us sometime and maybe we can have a bracelet trade off & I can have one to wear for your cutie too <3 )

P.S... I took several pictures today during all of this but they are still on my phone. Check back later and I will have them posted ;)

Round 3

Tuesday evening, his temperature rose and he had a rough night. The doctor came to visit in the morning to review his lab cultures and see what we could do to find the source of the fever.  He ordered a full body CT scan because Jacob was having real bad abdominal pain plus the pain in his chest.  The CT scan revealed pnumonia in his lower left lung. He was already on 3 antibiotics and an antifungal med, but he added another antibiotic to help fight the pnumonia.
Wednesday night he woke up coughing pretty bad and we could hear a wheeze plus some "crackling" sounds in his breath. He got a chest x-ray at 3am because they thought the pnumonia had spread. The x-ray showed basically no change so the noises were just from the same levels and those fluids moving around in his lungs.  
Thursday, he gave us another scare. He had a bad coughing spell that put a lot of pressure in his head and behind his eyes.  Then, he wasn't really waking up all morning and kept going in and out of sleep/consiousness.   It was actually entertaining to watch him dream, but it scared me because I had never seen him do this before.  He was talking to friends at school, having conversations and building things with his hands. He would reach out and grab for things and then put them together.  Sometimes he would get frustrated - like when he couldn't get a hold of the phone he was reaching for when he was really just pinching his sheet :). Then he would realize where he was for a minute and ask me what I was doing or where I was going. I wasn't sure if he was wondering why I was hanging out with this friends at Albion in his dreams or what we were doing at the hospital. I let the nurse know that he wasn't acting normal and that he seemed confused.  She checked on him and he said he told her he was confused and couldn't stay awake or stop dreaming. The Dr. evaluated him and decided to have a CT on just his head.  While we were waiting for the ct, he got a bloody nose and we couldn't get it to stop for at least an hour. Eeeewwww, it just poured...yuck! His head was getting worse through all of this and he coulnd't lay down because of the nose bleed. He went through another round of coughing and that's when he said the bomb went off in his head. That was really scary because I've never seen him in so much pain - even when he broke his nose twice last summer :) He was in so much pain and couldn't move. The Dr. rushed the CT scan and we just pushed his whole bed with him on it all the way out of the unit, down the elevator and into the CT radiology room.  By then he was shaking all over and I was about to pass out just watching him.  When he finally got to lay flat and they covered him with a warm blanket, he got better control of the shaking and made it through the CT. The doctor stayed watching the screen through the imaging process. He was looking for broken blood vessels that could be bleeding internally and causing pressure in his brain - or for symptoms of a stroke. was scary for everyone there watching for what we would find.  The Dr. was kind enough to reassure me as soon as we left the CT room & let me know that the scan was clear and they didn't see anything scary or dangerouos. Whew!!! I was so relieved, I wanted to hug him and then collapse.  We decided that he was just too low on all of his blood components and that was contributing to all the problems.  His platelets (which help to stop bleeding) were super low - & that's why we couldn't stop the nose bleed. And his red blood cells (that carry oxygen to the brain) were low too.  Combining pain medicine with low blood counts and an empty stomach is probably what made him so delirious and confused.  The doctor filled his tank with 3 units of platelets, 2 units of plasma and 2 units of blood.  The next morning (yesterday) he got another 2 units of blood too. We have learned a lot from this experience:
1. Jacob needs more volume of blood than most of the other kids on this unit...he's a strong athletic kid  and he just needs more blood than most :)  Dr. decided to keep his Red blood cell counts higher and give it to him before he drops so low.  Like filling your gas tank on the half mark rather than waiting 'till empty.
2. The kids on this unit go through gallons of blood products every day! ...they need all types. Here's a big THANKS to all the angel people out there who take the time to donate blood, plasma and platelets! Keep it coming :) 
Well, that gets you up to date through Thursday... I'll post some more later today when I have some more time.

Thursday, July 21, 2011

The first blood transfusion

Here's an entry from my journal about the first night we spent at the hospital with Jacob.  When they told me he would need a blood transfusion, I was so scared and I immediately said he should only have blood from me or his Dad since we were both there.  They explained to me that that wouldn't be possible because he needed it right away and it would take too long.  There were other reasons that they said they would explain later and we accepted it at that.  It was so scary that first time for all of us.  Just the sight of the bag of blood made Jacob nauseous and we have since learned to cover the bag up with a pillow case so he doesn't have to look at it.  Since then, he has had almost 40 transfusions plus more of platelets and plasma as well.  I'll get the exact number sometime soon and post that here.  It's hard to believe how much blood he needs to stay alive right now...we are so thankful for all the donors that do this for these kids! 
Here's my entry from a memory on April 8-9:

"Jacob got his first unit of blood that night.  We learned about how this blood was going to make him feel and what it would do for him. He got another one in the morning.  I soon realized how much blood these kids go through in the ICS floor.  In the morning, he looked better.  He had color in his face and his hands were not cold and clammy anymore.  The first thing I noticed is that he was warm.  He got so hot that he threw off his blankets and made me turn down the thermostat in the room. It was wonderful. He also began to think more clearly. He was so quick and witty. He was excited to know that we had answers and he had confidence that this would be quick and we’d be home again soon. “I’m so glad we caught this now mom. In the eighth grade, when it still doesn’t count. Next year I’ll be able to do better in school. I’ll be able to think better. I can’t wait to get all A’s!” It was truly amazing to see. He noticed the white board where the dr. had written out the diagnosis and the treatment plan for the next 2 days.  He noticed that the Dr. had spelled tonite, instead of tonight.  Wow, he’s back. I thought."

Wednesday, July 20, 2011

Here it is...diagnosis day. My first journal entry...

Today is Sunday, April 17, 2011.  We have been at Primary Children’s Hospital with Jacob now for 9 days.  Last Friday, the 8th of April, I brought him here to ask for them to run some tests on him.  Jacob had been feeling sick for a little while and had some strange symptoms for some time.  The night before, I stayed up late at night thinking of him and considering all the things that he had been feeling.  I made a list of all the symptoms that I had been noticing and when I looked at that list as a whole, all together, I knew that the only way I would get answers would be to go to the best place I could and demand that they run some tests on him.  Primary children’s emergency room admitted him and did all the tests and more than I thought I would need to ask for.  He was very anemic and we were told that he would need a blood transfusion so they brought us upstairs to the “Immune-compromised” section of the hospital where they told us we would be staying until he finished his treatment and the rest of his tests were back.  As I walked onto the floor, I looked around, taking it all in, realizing that there were some very sick children in this department.  There was an inspirational plaque next to the shelf with the movies that talked about cancer.  When I saw that sign, I closed my eyes for a moment and thought to myself, I couldn’t handle it if that were what he had.  He only needs some blood and we’ll find out what is wrong and fix it.  We will only be here for a little while. How do those parents of children with cancer ever cope with such a thing? I was soon to find out and learn all too well how they cope. After we had settled into our room that evening, the Doctor came in to talk with us.  It seemed to take hours for him to explain what was happening with Jacob.  He had the answer, he knew what this was, he had to tell us and he stayed with us watching us react, waiting for our response and explaining, talking, saying the word just enough times for us to absorb all that was being said. “Leukemia”, “cancer in the blood”, “the cancer is everywhere that he has blood”... “chemotherapy”.   It was too much for me to absorb all at once and I felt myself blocking out the information, shutting down. I closed my eyes and my body just shook as I tried to be strong for him.  I didn’t want Jacob to be scared, but he could tell, he knew that this was bad.  It was the worst news we could have received.  We knew it and we didn’t know how to react to this kind of news. I couldn’t speak. I had so many questions, but I didn’t dare to ask them. If I opened my mouth, I knew I would only scream. In my mind I begged, “Heavenly Father, you promised! I know what you said, I have counted on the promise! You wouldn’t give me more than I can bear!  I told Him, I can’t do this Lord.  Why do you think I can do this?” and he said to me, “because I know that you can”.  I didn’t want that. I didn’t want to hear that.  I didn’t want to be strong.  I wanted to be weak and protected, in my safe little world, with my healthy little children and just continue to thank Him each day for our blessings. Then I thought of Jacob, my boy, my son, my precious little boy, my strong, capable, fighting son.  He is the toughest kid that I know on the whole planet.  He’s the toughest kid we know.  He is strong and he is a fighter.  Lately, I’ve been so frustrated because of his feisty little “have to be the best” “always have to win” attitude! Now, I realized, I understood why he is the boy that he is and I was never more grateful for anything in my life but to know that my son is a fighter.  He will not quit. He never quits working toward something he wants. He never loses. He is a natural winner and he loves life.  This is what I clung to… I know my boy and he will not lose. 

The blog background

I'm just looking at Jacob's blog here and thinking...interesting background? I spent a bunch of time on TCBOTB looking at background patterns that I thought would be good for Jacob & there just weren't very many boyish style things.  Then this one just popped out at me and made me think, "Blood cells and Chemo!!!" ewww, huh?  Ya, the reason I picked this background is because those circle patterns in red, orange and shades of white reminded me of red blood cells, platelets and white blood cells.  Those three elements of our blood are the focus of our every day now. The sparkly stuff along the edges (which are probably supposed to be fireworks or something cuz I found this in July) well, that makes me think of chemo.  Chemicals blasting through his body, melting away the bad stuff in his system...and some of the good stuff with it.  yuck.
Well, that explains the's not one of the "cutest blogs on the block"...but it kindof goes with the story.  Maybe I'll find something better sometime, but that's it for now.

Tuesday, July 19, 2011


After reading through my last post a lot of feelings came back to me...and memories of what was going through my mind during that time.  Anyone who has been through something like this or is closely connected to someone who has would look at my "list" and think - cancer. But, when you haven't ever experienced cancer, it's the furthest thing from your mind...impossible. When I look back on this and kick myself thinking why didn't I listen to those promptings...that told me to take him in? I think it helps put it in perspective to recognize the weird thing is that those symptoms didn't start occuring together until about a week or two before his diagnosis. ...maybe that's why they think he probably only had it for a week or two before he was diagnosed?  If  you go back over the list and pick one single symptom, by itself, you may be able to come up with another reason or brush it off as nothing serious. When the severe acne started and they got infected, I took him to the pediatrician, they drained the "boil" and treated it, covered it and sent samples to the lab to check for MRSA or staff.  It turned out to be staff and on another time, it was strep.  I had never heard of strep in the skin before so that was weird to me.  I had this nagging feeling that I needed another opinion. I kept taking him to the doctors office and they kept reassuring me, telling me it was anything from strep throat, to dehydration, to ADHD. It just didn't sit with me though...and I couldn't sleep at night thinking about him.  I actually had visions of him dying in his sleep!  I thought I was over-reacting...what is wrong with me?.. I would think.  Am I becoming a "worry wart".  He doesn't know this, but I snuck in on him in the morning several times...just to be sure he was breathing and to be sure he would still wake up easily.  He would get mad because I had disturbed his sleep, but it still made me feel better... I just had to do it to get those ugly and rediculous thoughts out of my head.  C' was 12:30, 1:00 or even 2:30 in the afternoon and he hadn't even stirred to get up and pee! I wondered what movies he had stayed up all night watching.  He'd tell me he wasn't trying to stay up watching movies, he just couldn't fall asleep sometimes.  -Lots of teenagers sleep all day right? I just thought it was too early for that to start for him, he's only 13...just barely a teenager at all.
One day I was drying my hair in the bathroom and this thought came in to my head, "Take him to the hospital." I actually looked up or cocked my head for a second, and answered, "C'mon, do you really think he needs to go to the hospital?" I talked myself out of it.  This had happened several weeks before, maybe even a month before, when symptoms were still not clustered.  It was easy to talk myself out of going to the hospital with him, I felt I was over-reacting, but that gnawing feeling just wouldn't leave me alone. I know now looking back and feeling the spirit so strong as I do each day through this journey that it was the Lord, telling me to take him.  I know that now. It's almost as if the bleeding in his eye was just for give me that last push to make sure I would listen. This was an undeniable visually frightening thing and it was the one thing I knew I had every right to "freak out" about at the hospital without being looked at as an over-reacting mother. 
Also, I have to remember that he was still actually doing really well until the very last week.  He was jumping on the trampoline, out longboarding with his buddies and going to the gym with Dad a couple  of times a week.  Just the week before, he had come home from the gym to tell me he had run the mile on the treadmill at the gym in good time!  What he didn't tell me was that he was extremely frustrated with himself because he couldn't keep up or get ahead like he always had.  He wasn't even able to keep up with his buddies longboarding.  He had to sit down on a curb to catch his breath...and that made him just plain mad!
He was actually relieved in a sense when he found out he had cancer.  It explained everything for him and he was suddenly a little proud of himself for what he could do! We found out that he was functioning on less than 1/3 of the red blood cells that a kid his age needs to be healthy...and he had run a mile on that!

The "List"

Everyone asks me "How did you find out?" or, "What were his symptoms?"  The memory of those symptoms haunts me I'm sure it haunts him a little too.  He doesn't admit that he thinks about much of all this, but I know he thinks about all the little things that he felt before his diagnosis.  He wonders, as I long he has had leukemia, when did it start?  I believe it was a long time, although the doctors say this type of cancer grows very quickly and say it may have only been weeks before his diagnosis.  We don't believe that. Jacob was "sick and tired" for quite some time.  We are talking about one of the most energetic kids you'll ever meet and a born athelete.  He was the best at everything physical he ever tried to do.  He was a natural runner, jumper, skater, biker...whatever adventure he went for, he was good at it and he never ever tired...he would go and go and go until he was bruised and scraped and till the sun went down!

But that changed about the time he started adolescence. We thought it was just a phase.  He grew like crazy after 6th fast that his joints just ached.  He developed a condition in his knees that they called "Osgood Schlauters Syndrome".  It's when the tendons or ligaments in your knees can't keep up with the growth that the stretching becomes really painful.  In active kids like Jacob who don't slow down when things hurt, it just makes the condition worse until they are done growing.  His pain was so bad sometimes that he actually crawled up and down the stairs.  Usually, he would just pressurize his arms against the wall and the stair rail and then swing himself all the way down the staircase in just one jump. (Probably not good for the joints upon impact and probably didn't feel good when he hit the bottom, but hey, it was just one impact and that's probably how he justified it...he'd rather have one good crunch than to feel 8 separate steps down the stairs) Well, since then I have looked up a lot of the symptoms of leukemia and joint pain is one of them.  Personally, I think this pain was related. They say I just have to accept that I will never know.

We watched him grow and then become a little young man struggling with attitude and independance and his bullying temper and then the acne that so clearly marks the official entrance to adolecence. Poor kid, we thought, he's got it rough and this change is hitting him hard.  Our other kids didn't have it so hard and seemed to just sail through this stage of life into adulthood...but not this one.  We braced ourselves for the teenage years when he hit 13.

The joint pain was only the beginning of a slew of symptoms that we kept going back to the doctor for.  Probably the most prominent and definitely related to the leukemia was the headaches.  They started during football season in the Fall of 2010. Eight months before diagnosis...clearly more than just a few weeks.  I know this was related because headaches are still the first symptom he has when his blood counts get low and he becomes "anemic"...well, they call it neutropenic now - but it's just the name for a more severe case of it now that we know it's caused by his malfunctioning, tired and beaten, bone marrow. 

So, I could write all day about all the doctor visits we did between the summer/fall of 2010 and into the first few months of 2011.  Jacob knew something was wrong with him...I'm sure of it.  He is not a complainer or a whiner by any means...ever.  So when he said something bothered him, I knew it really bothered him.  If it was bad enough for him to say something and to let me take him to the doctor, I knew he was in serious pain.  Instead of explaining all those aches, pains, illnesses and so on, I'll just share the "List" that I still have stored in my phone since April 8th, 2011.

  • Tired - all day. Sleeping till noon & then lays around - lack of motivation (sounds like your typical teenager right?)
  • Loss of Appetite (should't appetite be increasing during this age?)
  • Lost weight
  • Swelling - face is very swollen every morning.  Fingers and body look swollen to me (sometimes when he woke up in the morning, his face was swollen and his eyes were puffy.  His hands always looked puffy to me.  Do adolescent boys retain water like girls do?)
  • Headaches (been taking excedrin occasionally) (I thought the headaches were caused from lack of sleep or dehydration...the doctors all agreed with me and didn't seem concerned at all about them.)
  • Easy, unexplained bruising (this one should have been a giant red flag, but what did I know? - I figured it was the aspirin in the excedrin he had been taking! ...and the fact that he was always doing daring things)
  • Coughing excessively
  • Vomiting - maybe related to coughing - don't know? ...2 days
  • Eyes - he's seeing something "floating". It obstructs his vision (It took them about 6 weeks to confirm that this was caused by hemmoraging behind his eyes and low platelets...little broken capillaries from the pressure when he coughed and threw up. Because of the connection from the eyes to the Central Nervous system, he got a lot more doses of chemo injected straight into his spinal fluid because of that little floaty thing in his eye )
  • Eyes - his eyes were bloodshot and the blood gathered & stayed in the whites of his eyes. One eye was blood red where it should have been white. (this one wasn't on the original list because I knew we wouldn't have to point it out...this was the thing that gave me the confidence to take him to the emergency.  It looked very scary and I knew they wouldn't question it. )
  • Pale - yellow/greenish skin (nobody else noticed this but me...and I felt like a hypochondriac mom just thinking it. Until we stood at the counter of the ER at PCMC and the receptionist said to me, "He looks pale...does he look pale to you?"
  • Severe acne - abscesses & boils staph/strep infections in skin (Can you believe we thought this was just an unusually bad case of adolescent acne! - we had several doctor visits about it and they thought the same thing!)
  • High Blood Pressure (at the Doctors office 3 days before diagnosis) - they took it twice and still brushed it off as anxiety over being at the Dr. or something
  • Dark - gold and reddish colored urine (since I thought that dehydration was causing the headaches, this seemed connected and I just hassled him over and over to drink more water)
  • The last thing I listed was that his pediatrician had diagnosed him as having ADHD just 4 days earlier!  Bad grades, inability to focus or remember instructions/assignments, history of high levels of activity... hmmm, that explains it all! -NOT
Included in the list were a few things I wanted them to test for and tests that I wanted done.  I was prepared to be assertive and demand that they do these tests if they didn't want to:
  • Blood Test
  • Urine Test
  • Strep Test
  • Check for Hypoglycemia
I didn't let him eat breakfast that morning.  I had planned it the night before (without telling him) that he was going to the Dr. fasting on an empty stomach.  I knew that they preferred to have an empty stomach for some types of tests and I didn't want to delay anything that would give me answers or give them an excuse to let me take him home and bring him back another day. Turns out, I didn't have to ask for any of it. They got right to the point and did all the tests.  They had taken one look at his "pale" face and my little list in my cell phone and saw all the red flags.

On the way to the hospital, Jacob realized we were going the opposite direction from his regular doctors office.  I told him I was taking him to the best hospital in the country and we were going to get answers today. I was finished with doctors making guesses and I wanted answers for that gnawing feeling in my gut that told me something wasn't right.  He argued with me the whole way there and asked to see my list.  As he looked it over, he told me not to show them all of it.  "Some of this is rediculous, Mom. Don't tell them I'm tired or pale...I know I'm up too late at night and so what if I want to sleep in or watch movies... Don't tell them about my appetite either, that's stupid. You're making a big deal out of nothing." And then he would say, "what do you think it is?"  I didn't know... I thought it was all because of the excedrin he had been taking for headaches. I looked it up and found out there was aspirin in it.  I thought it was thinning his blood and making him bruise easily.  I thought the caffeine was actually causing the headaches on the days he didn't take it, like he was just addicted to caffeine.  I thought he may have taken too much or too often, not paying attention to how many hours were in between each dose...maybe he had damaged his liver or kidneys and that's what was causing all the rest of the symtoms.  I was so worried about that.  Later, I wished that was actually the seems so minor now, what's the worst thing that could have happened with a little liver damage - a transplant?

Monday, July 18, 2011


About 6 weeks after Jacob's 13th birthday was the beginning of football season again.  He was picked for a great team with Coach Potter, the team he hoped for along with a best friend, Tyler.  Of the twenty-something kids on the team, Jacob was the one and only "x-man".  This meant that he was bigger than the average player and could only play "the line".  They put a big white X on his helmet and he was always easy to find on the field during games or practice...all I had to do was look for that big white X. 
Watching him was a little hard this season.  Our little athlete was struggling really hard this year.  Our competetive kid who always had to be first at everything was always the last one around the laps as they ran, he struggled through pushups, down-ups and every other drill they put him through.  It was hard to watch and my heart broke as I watched his self-esteem struggle to stay on top of his game.
He still always managed to make us proud and he worked so hard to do his best every day, every practice, every game. 
On the day of tryouts, we stopped at a friend's house to pick up a chinstrap for his helmet.  We were running a little late, so it had to be a quick stop. He was so excited to get to the tryouts, but equally excited to get that new chinstrap.  He jumped out of the van and ran to the door where the little brown lunchsack was waiting for him.  Picking it up, he didn't even slow down, but turned to run full speed back to the van.  He didn't even look up to see the underside of a cement flight of stairs leading up to the next floor of the apartments. Slam...he took the impact right smack in the middle of his face! Only about 6 weeks before, he had broken his nose on the side rail of a trampoline.  It was finally all healed and there it went again. Twice, in just 6 weeks...he broke his nose!  Ironically, he went on to play noseguard for coach Potter's team and they won the championship.

Eight months later, just after diagnosis... Reese Kimball remembered how he had broken his nose right in front of their apartment door.  (He's probably reminded each time he steps outside and sees the new rails they installed all over the apartment complex after Jacob's accident)  Reese sent Jacob a handmade card that read inside, "Anyone who can break their nose twice and still play football - can beat cancer!"

101 Days

I have been trying for so long to start writing Jacob's story.  I keep thinking I have to go back to the beginning and start with diagnosis, or when he started getting sick, explain all the symptoms and then begin with the first day of chemo or maybe the day of surgery when he got his new "equipment" placed in his chest.  It's the tube thing that goes into a main artery and directly to his heart.  Basically, they use his heart as a pump to administer the poisonous medicine throughout his whole body...the poison that will save his life. doesn't make sense.  I could begin there, but then I'd feel like I have to chronologically document every event after order. I know I will procrastinate more if I begin there.  I decided to ask the nurse if I could go back over all his records to jog my memory so I could get it all right and in perfect order.  She said I could go down to the records library and sign a release form and then view it all.  ...that's nice to know, maybe I will do that someday. Someday...and this story will have to wait.  So, I'm not going to try to go back to the beginnning. I figure by now...101 days since his diagnosis, that everybody reading this probably knows that Jacob has leukemia. I'm sure that if I just write a little something everyday that the peices will all fit together.  I wish that I could have started doing this right from the beginning...but I was a mess.  It took me at least 6 weeks just to feel like my feet were back on solid ground and even still sometimes it feels like I am just floating.  Once in a while I get that feeling like I'm still reeling from the shock of it all.  When I stop for a second and let myself absorb the  reality that my boy has cancer. It's that feeling like the room is spinning or the world just kicked up the speed of it's rotation for 2 seconds...long enough to make me feel out of control, dizzy and confused.  Then, just as quickly, I get a handle on it realizing that my eyes are just a little clouded from the tear that didn't fall - it just filled up in front making everything seem blurry for just a moment. If I blink, it will fall. So, I widen my eyes as big as I can and think of my Heavenly Father and my Savior and how they love my boy so much - even more than I do, more than I can imagine. And then, the wet feeling in my eyes begins to dry as He wipes my tears and reassures me once again.  He says to me, "It's all going to be ok. I know you can do this because I will be with you and you can be strong when you have to be.  When you don't have to be strong, I will carry you."  I am amazed at how close I feel to my Savior now. I have always had a strong relationship with Christ and I don't ever remember a time in my life when I didn't know that He was real and right there with me. But, is amazing how close He is all the time. It's sadly uplifting how I have come to deeply understand His suffering and sacrifice ...through watching my own son suffer.  I think of how much more painful and heartwrenching it had to be for my Father in Heaven to watch his son as he suffered here on earth.  It's too much to take in, too much to imagine that He felt pain so much more intense than what Jacob is going through, that he felt sadness so much more than I do.  Then I think of all the other kids going through this...some of them suffering even more than my boy.  Some so tiny and some just a few years older than him but who have been fighting this battle so much longer than we. When I think of them, the tears come back again and sometimes I just can't fight it. Why does there have to be so many children who suffer in pain and some who die? How do their families ever get through the pain of losing a child? I pray again, that I will never have to find that out.  I pray that I can learn how to comfort others and help other families and that I can learn the lessons and training that I He wants me to know through this...without losing our fight.  ...Strengthen him Father, as you have strengthened me...teach him to feel the spirit and to turn to You when he is afraid.  Help him to understand and relate to the pain and suffering that You endured so that he could be healed.  Teach me Father, how to reach his little spirit and help him understand your love for him. Hold his hand through this experience and carry him through it reminding him that you understand, that you know and feel the pain, the fear and the emotions that he has inside.