Today is Maci’s cancerversary. 1 year ago today…. she was diagnosed with leukemia. I’ve never really gone through the details of this day….. too much going on at the time it was actually happening, and too painful to revisit since then.
But today seems like a good day. Im proud of what my girl has done. And I want to share where we’ve come from.
I’ve mentioned this all started with Maci’s 1-year check up. It was a week delayed, because she did have a little ear infection and a little virus going on the week she was supposed to go in. No fevers. Some wheezing. We thought maybe early asthma.
When we went in the next week, things were clearing up. She was crankier than usual…. but I just thought it was developmental… or remnants of her cold. She got her shots and they did a finger stick. Wait just a sec…. we’ll run the blood and you guys are outta here. Maci sat and ate her cheerios and drank her milk. Out of her big girl sippy cup, ya know. She wore her new red shoes. And an outfit that was too big. Sans pants in this pic.
We actually saw Dr. Dwyer, our regular pediatrician’s new partner, that day. We couldn’t get an appointment with Dr. DuMais because of all the rescheduling.
She walked in, looking a little bewildered. ”Does Maci eat much meat?” Well. Yes. Actually meatballs are one of her favorites. ”Ok, don’t worry, but…”. But her hemoglobin is a little low. 8. Sometimes this machine doesn’t read right. Why don’t you go ahead and get a full blood draw, just to be safe.
Honestly, at that point, I wasn’t worried. I was annoyed. Annoyed that I had to drag my baby to a lab and poke her little arm with a needle. They asked me to go straight from my appointment. I still wasn’t worried.
We went. Maci cried. Mommy cried. Then we went shopping and played with Aidan. Normal day. John and I talked about it. Maybe she needs some vitamins. We ate dinner and put our girl to bed. Normal night.
Next day I had forgotten about it all. Off to work we went. I was running around all day, and was a little surprised to see a missed call from Dr. DuMais and John toward the end of the day. Called them both back, and got Dr. DuMais first. Maci’s blood work was off. Abnormal. I don’t think he ever said “concerning”….. but he pointed out that her hemoglobin was in fact low. As were her platelets. One thing I DO remember him saying was that her white count was in the “normal range”….. But…
Again. Another But.
She had just finished a course of steroids. for that silly wheezing a few weeks ago. Apparently steroids can cause an artificial low white count. Confused? I was. Now I know…. steroids actually treat leukemia. One of the first lines of defense. We had NO IDEA at the time…. but we had actually treated the leukemia a bit… thus that tell-tale diagnostic factor…. a HIGH white count… was not showing up for our Maci.
Never the less…. Dr. DuMais was worried enough that he had called Dr. Hayani and talked to him about Maci’s results. Dr. Hayani wanted Maci to come get checked out. Why don’t you go ahead and take her in to see him, just to be safe.
I’ll never forget that. I said to Dr. DuMais…. “you know I work here, right? I KNOW who Dr. Hayani IS. I KNOW what KIND of doctor he is”. Yes. Yes. But he also treats blood disorders and many other kinds of issues. It’s not all about cancer.
Call it a mothers intuition. Call it whatever you want. That was the moment. I knew there was something wrong. I knew in my GUT it wasn’t something simple and easy. I knew my baby was sick. I knew our life was about to change.
It was all so surreal. I walked over to the clinic… all of 50 feet away… and made our appointment for the next day. I remember picking up Maci from the sitter, and holding back tears. I looked at her…. She was so pink. So happy. Chubby.
HOW could this be happening?
Got in the car and let it all go. I screamed and cried and BEGGED for this not to be happening. I repeated over and over and over. Please. Please. Please. don’t let this be happening.
All the while looking back through tears in my rearview mirror… at my perfect happy little baby girl.
We got home. I could see John was worried, but tried so hard to reassure me. We didn’t know anything yet. We can’t get upset over nothing. Let’s just wait and see what they say. I spent that night thinking…. is this the last time we’ll eat dinner without cancer. Is this the last bath without cancer. I held her tight and kissed her so many times. And repeated over and over and over. please. please. please. not my baby. please.
I cried myself to sleep that night…. watching trashy Bravo TV.
I just remember the next morning being so strange. Everything felt off. I didn’t know what to think or feel. Just felt numb. We got to the clinic, so weird to be here with MY FAMILY. On THIS side of things. They weighed Maci. took her temp. blood pressure. Things we weren’t used to… but now are such a part of daily life.
Dr. Salvi came it…. and I honestly don’t remember much. But one thing. I remember him lingering during her abdominal exam. She wasn’t thrilled with the poking in her belly…. and he was doing a LOT of poking. moving things around in there. pushing something in that tiny little belly back and forth, up and down. Then he got out a marker…. and made dark blue marks on my baby’s belly. Measured the distance between the marks.
I had no. idea. what he was doing.
I finally built up the courage to ask….. Her spleen is enlarged. Then he got quiet again.
After he finished his exam he said that based on her previous blood work….. and the enlarged spleen…. and her history of steroid treatment. this was something serious. This is not a mistake. not a simple issue. not a typical childhood insufficiency or whatever we were trying to tell ourselves. This could be 1 of 2 things. But both bad.
I honestly don’t remember what bad option #1 was…. but bad option #2 was leukemia.
It was happening. This was the beginning.
They drew blood (awful) and we waited. Dr. Salvi was going to look at the slides….see if he saw anything. She couldn’t have a bone marrow aspiration (to confirm) that day because she had already eaten.
We waited in that room. We spread out a blanket on the floor, and played. Read books. John and I tried not to talk much.
It probably took less than 30 minutes. Dr. Salvi came back in…. and I knew. The look in his eyes. I KNEW. Stay sitting, he said. Stay where you are. He was quiet. He knelt on the floor with us and told us. There were leukemia blasts in her blood. He saw them. They were right there floating around in her perfect little veins.
Maci has leukemia.
The numbness had been building, but now it was overwhelming. Complete. I didn’t cry. I didn’t scream. I just stared at him. Tried to think what to say. The only thing in my head was no. no. no. no.
Maci was getting antsy…. and we were distracted with trying to entertain her. I remember Dana, one of our amazing nurses, came in and took her… told us she’d play with her in the day room so we could have some time. I think we asked Dr. Salvi some questions…. I can’t remember specifics. I remember it was cold in the room. I remember feeling relieved when he said she would be admitted today. right now. she wouldn’t be going home. I know that sounds weird…. but the thought of leaving the hospital, going home, trying to be “normal” was too much to handle. I suddenly felt this urgency to BE there. DO something. It would at least occupy us.
I remember hugging John for a long time after Dr. Salvi left the room. I stared at the ceiling. That numb feeling was so strong…. I couldn’t believe I wasn’t sobbing. We called families. We were short and straight. We left the exam room and tried to occupy Maci for what felt like HOURS….. until we got a room upstairs.
That night was so surreal. She wasn’t sick. She was smiling and giggling. Entertaining the 4th floor nurses. How was this happening?
Im not sure when it all started to hit me. I remember John and I slept on the floor… on a mat. We didn’t know what else to do. There wasn’t much sleep…. and I kept thinking that his all MUST be a dream.
I just needed to wake up.
This story happens EVERY 3 minutes. EVERY 3 MINUTES. families are devastated. children’s childhoods are snatched away. EVERY 3 minutes a child somewhere in the world is diagnosed with cancer. This is our story. And this is why I spread awareness. why I take action. why i do whatever I can do at this point in my life to help STOP this from happening. NO ONE deserves this. NO CHILD deserves this. We NEED a cure.
September is childhood cancer awareness month. TAKE ACTION. Pass it on.