The "List"

Everyone asks me "How did you find out?" or, "What were his symptoms?"  The memory of those symptoms haunts me now...as 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 do...how 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 grade...so 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.

"Jacob"

• 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 problem...it seems so minor now, what's the worst thing that could have happened with a little liver damage - a transplant?