On Wednesday December 27th Danny and I brought Henrik into the walk-in clinic for what we thought was going to be a routine in-and-out check up, get an antibiotic and go home. Based on a few more symptoms we decided to do a basic lab test called a CBC. Within minutes of receiving very abnormal lab results and seeing the concern from our pediatrician... i ask him to just tell it to me straight... his response, "it's likely leukemia" Our hearts sink. It's your worst fear. It's unreal. We can't even process it. We're hopeful that it's not. We were immediately sent over to the Children's Hospital ready for an inpatient admission. I asked the nurse which pediatrician is on call. She says his primary doctor will be doctor Kobrinsky... my heart sinks again.
Now for people that don't know Dr. K, I've learned over the past 3 days that he's the most amazing, brilliant, caring doctor that is so passionate about what he does, but no one wants their primary doctor to be a pediatric oncologist. We get into the room and get settled and as Dr. Kobrinsky is assessing him I look at him and ask "This isn't anything else is it?" With his hands on Henrik's little tummy he looks at me and says with certainty "This is cancer"
Backing up to a few months ago I just want to talk about Henrik's symptoms because I know people have been asking how did this happen? When did this happen? We just saw him and he looked fine. He was in normal, healthy, happy boy going to preschool and running around playing with friends and even running up and down the sledding hill on Christmas without any problems. Looking back of course you can always say to yourself I should have brought him in sooner. But we're just trying not to go there. I want to talk about his symptoms because I want people to know. I was also blessed to have family in my life that is willing to speak up and say something to me when they had concerns. When you're the mom and you're around them everyday you don't notice the changes as much as others might. But I also want to educate people because we felt so blind sighted because his symptoms were so mild. So here we go...
Henrik has had a cough on and off since this fall. What kid hasn't? It's that time of year. He has started preschool so there's new exposure to germs. I'm a nurse so what do I do? I listen to his lungs. They are clear. His cough is non productive. He coughs more at night so probably just a post nasal drip. It would be worse some days, gone others, worse at night then gone for a week at a time. But it was clearly from a weakened immune system that he just couldn't kick the cough.
He started to struggle with going to preschool. He seemed drained and tired. He had anxiety about little things that didn't normally give him anxiety. I'm sure his body was getting sick and he felt like absolute crap and it just made it hard to deal with the little things in life that he normally enjoyed.
The past two weeks he really didn't seem like himself. His skin was more pale. He looked tired with dark circles under his eyes. This was an easy one for me to dismiss too as this is from my genetics. I looked the same way as a kid. Still trying to beat those dark under eye circles with hundreds of dollars and eye creams.Haha.
The past couple weeks he has also had a lot more bruising on his body. As a nurse I know the symptoms of low platelets but he just didn't seem to fit the symptoms. He never had bleeding gums. (And we scrub those chompers!) He never had a bloody nose. He didn't bleed heavy with a scratch. The bruises were normal looking. No petechiae. We defiantly noticed that he had more bruises than normal but they were in places that boys get them. Knees. Shins. Over a bony prominence. It seemed somewhat appropriate for a wild 4 year old boy who jumps off of furniture and uses the stairs as a slide.
Now this is a an interesting one. I know that when your body is anemic it searches for nutrients in weird places. And that eating dirt is one of those symptoms. I did not know that Henrik's obsession with licking wood and cardboard was an anemia symptom. But over the last two weeks it's been like a moth to a flame. He opened a present on Christmas of a Melissa & Doug wooden stamp set and his first thought was to start licking them. This one isn't such a funny story knowing now how sick his body was and just searching for nutrients... but it was funny at the time. I was out with the boys at the mall and couldn't resist my favorite store that had just opened, Lululemon. So bravely I took my wild childs shopping with me. I was getting compliments on how good of little shoppers they were being. And they really were doing just great. Until I turned around and saw Henrik and Harrison latched on to the raw wooden table in the store like two little beavers! (Harrison is just a little shadow to his big brother). Of course looking back I wish I would have just Googled it or something and looked into it more but Henrik has always been kind of weird and quirky and likes to put things in his mouth. And like any little boy when you tell them not to do it of course they do it more.
Over the holidays he seemed drained, tired and just not himself. We didn't think much of it because it was a busy time for an excited boy his age. During a Christmas celebration with family Henrik and his brother were running around the house like crazy boys do. Playing with nerf guns and having fun. Henrik took a fall and told us it was hard to breathe. He was winded and pale. He got over it fast and we assumed maybe he just got the wind knocked out of him.
We had a couple more Christmas celebrations and then on the night of the 26th we went to my mom's house. The moment I knew it was time to bring him in was when I was at work on the 27th. I read a text from my mom: "... I wanted to tell you that when Henrik came upstairs he was out of breath and had faster resperations, which is different from his usual response. He seemed more pale and tired than before. I know that you have been keeping a close eye on him and I want you to know that we see it too. Scott mentioned that he could have some anemia on top of a respiratory infection..."
(Thank you Scott. You were EXACTLY right)
My immediate thought was "that's it! I'm taking him in." I almost left work to get him seen in the clinic because of that sick feeling in my stomach that something might be really wrong here. Like I always do, I run all of his symptoms by my nurse an mom co-workers. They saw the concern in my eyes and helped validate my feelings. They helped to get me out of there a little early to get to Henrik.
There are a couple points that I want to get across by telling you these things. First of all, let your family help you raise your children. Take advice from the ones who've done this before. Don't think you know it all as a parent. Don't be offended when people try to tell you things about your kids and interject their opinions. Those opinions helped us get our diagnosis. I have always said to my mom and to my mother-in-law, who are just wonderful caregivers, I am always open to suggestions on parenting. I haven't done this before. I do need help.
And second of all always always ALWAYS trust your mom gut.