“Cece, my mini me, my first baby. She was a normal three-year-old when this all started. She was enrolled to start preschool in the fall and ballet over the summer! In April was the first time she seemed a little off. Cece was not eating, complaining of a stomach ache, and lying around. I called the pediatrician and Tim took her in. I was pregnant, due in August, and he didn’t want to stress me out. The pediatrician basically laughed at Tim and was confused why they were there. That’s pretty much how the next two months went.
The first ER trip said she had toxic synovitis, which is common in young kids after a cold and it should clear up on its own. If it persisted, they suggested a rheumatologist. We saw a rheumatologist, twice after another trip to the ER. That ER trip said Cece was just constipated and it was growing pains. The rheumatologist had the nerve to tell me: ‘At least it isn’t Leukemia.’ He thought it was normal growing pains, or possibly juvenile arthritis.
The problem was her symptoms came in waves, it turned into a cycle. She would be fine one day, usually the day we saw a doctor, and crying until 4:00 a.m. the next night about how much pain she was in. This went on for two months. It always started with a fever and then a few days later her limp would get bad and she would be up all-night crying and screaming in pain. Eventually she slept in our bed because I couldn’t keep going back and forth to her room. Cece’s symptoms were: weakness, stomach pains, a limp, fatigue, loss of appetite, dramatic weight loss, not interested in normal activities, frequently cold/shivering while sweating. Also, different body parts hurting; legs (hips), back, neck, etc. eventually she hurt all over and was very sensitive to being touched and resisted bathing.
After two ER trips and multiple trips to specialists I made an appointment with a new pediatrician. It was going to be fine though, because the rheumatologist had told me it wasn’t Leukemia. The new pediatrician was the first person to take me seriously. I didn’t understand how a three-year-old with a limp was normal, and neither did she. She ordered the blood test and x-ray of her leg that flagged and sent us to hematology/oncology. At this point I was starting to feel guilty, Cece had her blood drawn five times and I was starting to wonder if I was making it all up! Every time she had blood drawn it took multiple people to hold her down. My stomach was getting bigger and bigger and I couldn’t do it alone. Once we were referred to Hematology everything moved very quickly.
We first met her hematologist Dr. B on August 22, 2018. A lot of her paperwork says that was her diagnosis day, but it wasn’t. I haven’t admitted this to anyone but my husband, but I started crying when Dr. B came in the room and Cece was acting normally. She had been having there good days in a row but was starting to decline. Those were her last there normal days at daycare. The other kids had been making fun of her because she couldn’t keep up with them. I started crying and begging Dr. B to help my daughter, no one would listen to me or help, but there was something seriously wrong with her! He was very reassuring and took his time with her. There was lots of help on hand to draw her blood and he would call in the next couple days.
As we were leaving a family came by with a wagon full of pink Build-A-Bears and balloons. Cece didn’t need any of that stuff; those were for the sick kids! I argued with Dr. B about it and finally he was like, ‘Just give her the bear!’ I was sick to my stomach walking out with Cece and that bear and balloon and all the other toys they gave her to distract her from the blood draw. I talked to Dr. B the next day because Cece had a horrible night. At first her blood work came back fine but then he sent a message on My chart at 10:30 p.m. on a Saturday night to say he would be calling the next day at 10:00 a.m. and to have my husband available. I was terrified.
He wanted to do a bone marrow biopsy on Cece immediately. Was that really necessary? I googled it once but got scared and closed it. Leukemia came up but that doctor told me Cece didn’t have it, so at no point did I seriously consider that was what was wrong with her! Tim and I took her in and assumed after the test we would go home and wait for the results, most likely have to go back the next day. I hadn’t seriously considered we wouldn’t be going home. Before they took her back Dr. B told us it was a 50/50 chance it was Leukemia. Tim and I were speechless. Once we recovered, we knew… we immediately made our family plan. Tim would stop working, I was the breadwinner and carried the health benefits, so there really wasn’t a choice. It all happened so fast. I’ve become obsessed with this part. Who knew and wasn’t telling us? That last pediatrician had to know, I could see it in the way she looked at Cece and I. We blinked and they were wheeling Cece back into the room. Within 20 minutes Dr. B was back, it was Leukemia and she would be admitted immediately. Chemotherapy would begin tomorrow; she would be staying for at least a week. She would also have a med port inserted in her chest.
In that instant our hopes and dreams for life were dashed. Everything changed in an instant. What about our other daughter, Lily?! We were going to have a new baby almost any time! I immediately left the room and sobbed in the bathroom across the hallway. My beautiful baby girl had cancer?! How did all the doctors miss it? The days leading up to her diagnosis play like a record over and over in my head. Once we got to this point everything starts to get fuzzy…
Cecelia has Acute Lymphoblastic Leukemia, the treatment Is 2.5 years of chemotherapy, chemotherapy that kills the good along with the bad. Chemo that gave her steroid induced diabetes. Chemo that made her hair fall out, intensified her limp, and is causing major developmental issues and short-term memory loss. Don’t even get me started on her behavior, she’s scared all the time and a completely different kid than the independent one that started this journey. She wakes up at night screaming about the needle used to access her med port. She has been put under general anesthesia 12 times and has had approximately 30 in patient overnight stays, Tim or I always with her. We’ve had to give her shots at home, plus oral medicines and she can now swallow pills! We’ve come so far.
During this time her baby brother, Andrew was born in August and Lily has spent a lot of time at my mother and sister in laws. I don’t know how we would have gotten through this without Tim’s family. We all spent those first few months scattered everywhere. There were times all three of the kids spent the night somewhere different. Tim and Cece have been in isolation and haven’t been anywhere but home, the clinic or a family member’s house since June unless it was a special event just for kids with compromised immune systems. It hasn’t been pretty, and I am embarrassed to admit there were times I wanted to give up because it was too hard. There have been some very dark days, cancer and isolation can take you to some ugly places.
There have also been funny moments. In the beginning she was on steroids for a month straight and her appetite was insane. It was like having a newborn; she would wake us up to eat. I was still pregnant, and we had fun eating everything together. One time after a long day of treatment, Cece woke up from anesthesia and said, ‘Let’s get the hell out of here!’ Also, I can’t believe I haven’t mentioned Cece’s best friend yet, a stuffed skunk named Skunky. I can’t believe we don’t get hospital bills for him too! He’s had it all done too, masks, blood pressure cuffs, band-aids, he never misses an appointment.
We have learned who our true friends are and who can be counted on. We have experienced generosity beyond our wildest dreams and have been connected with some amazing charities. Tim and I can’t wait to be on the other side to give back. I don’t make enough on my own to cover all of our expenses but by the grace of God it always comes together. I have tried so hard to keep my faith, there has to be a reason this is happening to my little princess and some good has to come of it.
Right now, Cece is finishing up frontline treatment and will start long term maintenance at the end of February. Once frontline treatment is over, the isolation can ease up, unless her counts are low. On paper maintenance sounds easier but it’s a lot more medication at home and one week of steroids a month, until August 2020. The steroids are the worst and also weaken her bones. Tim and I are terrified of the long-term side effects.
Her doctor has insisted she start preschool just for the socialization and mental stimulation. Her boredom is driving all of us insane! We hadn’t planned on sending Lily until the fall (she turned 3 in January), but we are going to send them together. All those life plans we had made, God has just laughed at. That’s the hardest part, nothing about our family is normal anymore. Everything always has to have special accommodations made for Cece to participate. If anyone is remotely sick Cece, or any of us, can’t be around them. A fever of 100.4 means straight to the hospital! The first fever happened pretty quickly, in August, that’s why Cece was in the hospital when I gave birth. Tim and I have really struggled with the new ‘Cancer family’ status.
Tim and I have come to realize that our main priority right now is our family, and Cece’s health. As long as we are together, we will get through this. Jobs, money, material possessions, none of it matters as long as we are all together. Cece has always been incredibly persistent and is such a fighter. The nurses and doctor swear the child’s attitude is extremely important and my little girl doesn’t give up. I don’t think she really, truly, has a clue what’s going on, she just wants her family. I have watched her go through horrible, painful procedures, and wake up like nothing. I constantly tell myself ‘If Cece can do it, so can I.’ Children are so resilient, and even though August 2020 sounds so far away we don’t have a choice. As a cancer family we will get through this and we will all be stronger than ever.”
This story was submitted to Love What Matters by Alexandra Staskiews of Macedonia, Ohio. Follow CeCe’s journey here. Submit your story here. For our best stories, subscribe to our free email newsletter.
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