What Dallin's still up to....

Ok.  This is just not normal for a 4 1/2 year old at 4:30 in the afternoon!!

Especially to find him like this more than once a day- and that he goes to bed early and sleeps in late?  I wish I could joke that it's nice, but really, I'm pretty worried.  We keep checking his h&h, and they're on the low side (for him... HORRIBLY low for anyone else!) but his retic count is high, so we're just watching and waiting.  We're leaving for California for a week and a half this Thursday, so I'm planning on keeping him out of school for the next week- hopefully his body will rest and do "it's thing"- so long as "it's thing" is to heal and recuperate!

What we've been up to...

Dallin decided to start this year off with a bang...

Really, since mid-November, he's been so pale and had seemingly isolated symptoms pop up sporadically (and usually in the middle of the night)... a rash here, a fever there, colds & coughs ('tis the season), and random complaints of a sore 'mouth' (pointing to his throat(?)- Nathan and I both checked his mouth numerous times looking for white patches, decay, ANYTHING really that we could attribute all this sickness and complaints to.  At the end of December, after he woke up inconsolable (again) in the middle of the night, complaining his 'mouth' hurt I finally brought him in to the doctor... the strep test was negative, but he put him on antibiotics (yay!) just to see if we could knock something out.

He was fine throughout the day on New Years Day- he took a nap in the mid afternoon, but that's not to unusual for him right now.  At bedtime, he was complaining that his mouth hurt and seemed generally miserable...  around midnight, he woke up throwing up- it was a very dark green.  I was worried.  What is wrong with this child??  Neither of us got much sleep that night.  He complained of his arms and legs hurting, pointing to his joints, complained his tummy hurt, and wouldn't let me palpate it.  He was so so pale, and by the morning, he was so lethargic he couldn't get up. 

There have been several times we've toyed with the idea of bringing Dallin in to the ER related to his spherocytosis, but he'd always come around before.  We've always known it was just a matter of time before we'd need to bring him in, but how would we know?  With Dallin's particular blood disorder, the spleen is working overtime destroying all of his red blood cells causing it to become enlarged and increasing the risk of rupturing.  Gall stones also occur more frequently, even in children, because of the excess bilirubin from red blood cell breakdown-these stones can cause obstructions and green vomit.  Both an enlarged spleen and gall stones can cause nausea and vomiting, as well as referred pain to the shoulders... so with his most recent combination of symptoms, it didn't take much discussion for Nathan and I to both agree he needed to go in to the ER.

So Sunday morning, (the 2nd day of the year into our $5500 insurance deductible) we made our first ever trip into the ER.  Fortunately the ER wasn't too busy and we got right back.  And right into every possible test.  After an awful IV start and blood draw, they of course needed to rule out appendicitis, so we got an abdominal xray, ultrasound and CT scan.  His hemoglobin and hematocrit were low (for him)- but his retic count (immature red blood count) was high (which is good), so I wasn't too concerned about it.  The imaging studies didn't show much, just a few enlarged lymph nodes in his abdomen, but his spleen wasn't overly large and his gall bladder was functioning normally.  After a few hours, Dallin was starting to come around and was thirsty... and grumpy- he hated the IV.  He didn't want to watch any movies or shows, he wanted a drink.  But the doctors wouldn't let him eat or drink anything, just in case he needed surgery.  He was miserable- I finally begged a nurse enough to let him have a few teaspoons of water which appeased him for a bit.  Since his h&h were fine and he was feeling like drinking, I asked the doctor if he could try some liquids, and if he could keep those down if we could go home... she said she didn't feel good about that and instead wanted to admit him.

The few times as a nurse that I've had to float to the pediatric intermediate unit, I've been rather surprised at the kids that sometimes get admitted from ER... pointless admissions (in my opinion!!) by an ER doctor who had to cover his tail just in case something was wrong.  I didn't want to be one of those admits!  I'm a nurse, I can monitor him from home, follow up with his pediatrician and hematologist... I let the nurse know how I was feeling... she let me know we weren't being admitted to peds intermediate, but rather to the hematology/oncology unit... and that his white count (which normally runs 4,000-10,000) was 54,000.  Okay.  That got my attention.

So we were admitted.  Dallin was allowed clear fluids which helped him rest much more comfortably, despite the IV, which he constantly complained about.  When the heme/onc doctor rounded late that afternoon, I explained that really, if he's continuing to keep liquids down and we could advance his diet, that I'd love to go home and follow up with his hematologist the next day(!!)... I will never forget the look he gave me as he said that he wanted to keep Dallin overnight... his exact words were, "with his enlarged abdominal lymph nodes, extremely elevated white count, and recent unexplained fevers, you know what we're thinking, right?"  And I did know.  He never said the word 'leukemia', but Nathan and I both knew that's what they were thinking.

It was determined that because of me needing to feed Hailee during the night, Nathan would stay the night with Dallin.  I went home late- tired and emotional.  I couldn't help but do some research on the internet, and what I found was FAR from comforting.  So many signs and symptoms pointed to chronic myelogenous leukemia.  CML.  Most leukemias are rather treatable in children.  Not CML.  It's a death sentence.  While it's not real common in children, when it does occur, it's prognosis is very poor.  Even of those that go into remission, generally within 2-3 years it's back and more aggressive.  CML is also generally found 'by accident' while trying to explain a history of recent infections- other symptoms include sore/achy joints, enlarged lymph nodes (especially in the abdomen) and an elevated white count- specifically with the neutrophils... at the time, I wasn't sure which type of his white cells were elevated- I had left my copies of the labwork at the hospital- I wasn't about to call Nathan at 2am to ask him.  And while I had a very sleepless night, strangely, and thankfully, I had peace.  I didn't know if I was in denial or if it was a tremendous blessing from Heavenly Father, but I knew that things were going to be okay.  Whether it be that Dallin had leukemia or anything else, I felt so strongly that Heavenly Father was aware of our little family and that things would be okay.

The next morning, I was up and at the hospital early.  I couldn't get my hands on those lab results quickly enough.  My heart sank when I saw that indeed, it was mostly his neutrophils that were elevated, but still, I knew everything would be okay.  I couldn't talk about it though.  I sent Nathan off to work without telling him what I had found out about CML.  Until I knew something more from the doctors, why should I worry him?

Dallin (when he finally woke up!) had improved much from the night before when I'd left.  Nathan said he'd perked up a little after I left the night before and had a popsicle and some juice, but then had slept well all night.  When they drew his labs at 0-dark-thirty, he hadn't really even protested that much.  His appetite was back that morning and he thoroughly enjoyed a bowl of dry cheerios... it was his only request.

It took forever, but finally the doctor came in with his lab results.  Dallins white count was down to 11,000-  everything was looking rather normal and since Dallin was eating and keeping his food down, he was going to discharge us!  What?!?  I was beyond relieved.  I felt like we'd just dodged a major bullet.  The doctor wasn't really sure what had happened with Dal, but could only guess it was an acute hemolytic crisis related to some infection and that his body just kinda freaked out.  I'll take it!!  Dallin just wanted his IV out *grin*  As always, the discharge process took hours.  Dallin got to pick several 'poke prizes' for each time he'd been stuck or poked (childrens hospitals are so wonderful!)- he was especially excited about his Cars puzzle- he needed my help putting it together since his right hand was basically dead to him because of the IV still in place.  My dad was there quite a bit and played games with Dallin on his phone- and amazed by Dallins ability to tell time and know that 1:00 comes after 12:59 (rather than 12:60).  I didn't mind that it took so long to be discharged, I just enjoyed the time with my boy.  I kinda regret that I don't have any other pictures than this...

 

He snapped one of me while playing with my phone-

 

 (in case any of you were wondering what my tongue and nose look like up close...)

 

So we've been doing a lot of following up with the hematologist, which means lots of trips downtown to the childrens hosptial...

 "Look what I can do mom!"

And as if my life wasn't dramatic enough, I got my upper wisdom teeth out Wednesday of that same week...  my sister was kind enough to snap a picture of me while in my drug induced sleep.  Wow I loved those drugs!

Dallin is still pale and lethargic.  And still taking naps in the middle of the day.  I find him asleep in the middle of the family room frequently at least once, sometimes twice a day.  It's just not normal for a 4 1/2 year old...