I remember when I was a child I used to see these TV commercials with little bald kids that were sick. Then later on as I grew older, I realized that those bald kids had cancer… it looked scary. Then I became a mother, I used to say, “I pray to God that none of my kids get sick like that.” It was something seen on television and I never encountered anyone in my family going through cancer therefore I had no idea what it was like. Until my 5 year old daughter was diagnosed with cancer.
I remember it like it was yesterday. My daughter had a fever on Thursday night in January 2010. It was a high temperature at 104 F. I thought okay just do the combo regimen of ibuprofen and acetaminophen. Then Friday, her fever hadn’t gone down and she was SUPER tired. I took her into the pediatrician. They did the usual tests of flu and strep. The doctor wanted a urine sample… well she couldn’t do it. She was just that tired and dehydrated. The doc told me to take the urine cup and bring in the sample tomorrow.
Saturday came along and her fever was still at 104 F even with all the medicine. Nerves started to twitch and butterflies in my stomach. This was my first child so of course I was worried. Worried that maybe I wasn’t doing something right with the medicine BUT that’s what the doctor said to do… My daughter was so tired she couldn’t get up to urinate. No pee sample for the doc that day. The doctor said to try to keep her up as much as possible so she can eat and drink.
Sunday came along and the fever was still at 104 F and I was panicking. Is a fever supposed to be this high for this long? Let me Google this and see what other parents say. Checked the temp again at night and it was breaking… Finally it’s almost back to normal. We can rest peacefully that night.
The Situation Is Out Of Hand
Monday morning came and I checked on my daughter. She was burning up! The temp was back at 104 F. That’s it! I can’t take this anymore. I’m taking her to the Emergency Department NOW! She was so lethargic that I had to carry her. She didn’t want to wake up. I remember thinking that I could not wait for them to give her IV fluids so she can get hydrated and we can be on our way home.
Well they did give her IV fluids and they took some blood to check. The ER doctor was very pleasant and then had a concerned look on her face. We need to transfer her to Loyola University Medical Center. WHAT?! WHY?!
They have special doctors that know what to do with a person with her blood counts. What do you mean blood counts? Well she doesn’t have much blood… She’ll most likely get a blood transfusion and get more testing there. We’ll put you in an ambulance with her. It was only a 20-minute drive but it seemed like FOREVER. My heart was in my throat. I called my husband to meet me there and that something was very wrong.
We got there and it was like a whirlwind. It seemed like we were carried to the 4th floor, it must have been the nerves on fire. They put my daughter in this small ICU room or it seemed small because I think there were 6 doctors and nurses along with us in there. They told us she needs a bone marrow biopsy BUT first she needs a few blood transfusions and a couple of platelet transfusions before they can do the procedure. The procedure would be scheduled the next day to let her body take the blood and platelets. My husband and I were on pins and needles. No sleeping that night… our eyes were on this precious little being.
Next day – the Bone Marrow Biopsy & Diagnosis
They told us to leave the room. I saw them flip her body over to look at her back and then I was suddenly in the hallway. I think someone shoved me out of the room. The doctor told us that it could be 3 different things that could be wrong – a virus, leukemia, or aplastic anemia. Then my husband started talking about what he read online before he went to the hospital. All I remember him saying was leukemia. I told him there’s no way. It’s a virus.
The doctors came out of the room. The procedure was over. We have to wait 2 hours for the results. WHAT? That’s a lifetime. Ugh! This is horrible…
The doctor came back and whispered to my husband. Then he came up to me and said it was leukemia. I rejected him and said the doctor didn’t tell me. The doctor was to tell the both of us. THEN the doctor called a woman into the room… She was a Child Life Specialist. My daughter was awake and feeling a bit better. The Child Life Specialist is to keep the kids busy and make it easier for the child to feel comfortable. Meanwhile I felt horrible because I didn’t want this lady with my child…I want to be with her. BUT again I feel like someone is moving me. The doctor took us to a consultation room. She told us that our daughter has cancer. It’s Acute Lymphoblastic Leukemia (ALL). She left the room to give us privacy. We flipped! We were balling on the floor holding each other in disbelief. We had this child for just 5 short years. WHY is this happening? Why her? Immediately we call our sisters to tell them the bad news. Then the doctors came in to talk to us.
They explained that it was not a death sentence and that it was treatable. We calmed down. Okay… I thought when you have cancer you die… The doctors explained the process very well however we were so overwhelmed. She would get a port-a-cath in her chest to receive chemotherapy. She would receive various MRI’s and CT scans to verify if cancer cells were in her brain. If so, then she’d receive radiation therapy. We’d have to stay in the hospital for several weeks.
We met many families in the hospital and the bond strengthened us to know we were not alone. Some children had leukemia, neuroblastoma, or rhabdomyosarcoma. It was shocking. Many of them were already bald and we came to realize that was the least of our worries for our daughter. The hospital became our second home. It was familiar to us and we felt hope that she was going to be okay.
I’m happy to say, our daughter is doing well at 10 years old now. She has to visit the hematology oncologist every 2 months to check her blood. She’s doing wonderfully. They say you’re not really “cured” until 7 years after diagnosis. We cannot wait until she’s 12. You know what I mean? This has been a painful journey. We saw children die and we saw children laugh and we saw children get sick again and we saw children playing. What a journey… Would I have changed it? NO. It has made my daughter who she is today. The caring and kind soul who wants to be a veterinarian. She knows how to treat people and understands what people can overcome. She is very wise for her age well beyond her years. She’s my love and my strength.
Here are my favorite childhood cancer charities; maybe you can find it in your heart to help find a cure for cancer or make this journey a bit bearable for families who are on this life changing journey.
If you are currently going through cancer, a cancer survivor or caregiver of a cancer survivor, you may want to check out Imerman Angels for their one-on-one support.
Take care and hold your babies tight!
Lillian De Jesus