Levi was diagnosed on June 8, 2007 with high-risk acute lymphoblastic leukemia. This was shortly after Levi turned 1 ½ years old, a baby in diapers. It was revealed by a simple blood test. This was the start of a hellish journey through childhood cancer.
Levi was diagnosed on a Friday and by Saturday morning he was going in for surgery to get a central line put in. A central line, or Broviac, was surgically placed in Levi’s artery in his chest and the other end came out of his chest. This allowed the hospital staff to draw blood from Levi and administer chemotherapy without poking him with needles every time.
Levi started the first of 5 phases of chemotherapy that Monday. The nurse came into the room with what looked like a Hazmat suit on. The chemo was so toxic she had to protect herself. I could not believe that this toxic cocktail was going to be put into my baby. I was told that I would need to wear protective gloves when I changed his diapers.
We were in the hospital for most of this phase, which lasted about 1 month. During this time Levi went through so much. He had an ultrasound of his heart, to establish a baseline of his current heart condition, because one of chemo drugs can affect the child’s heart. He had a couple bone marrow aspirations. This procedure involves inserting a needle into Levi’s hipbone at the back to extract bone marrow to test for leukemia cells. He endured many blood tests.
Levi started losing his hair about 2 weeks into treatment, so we decided to shave it off, as it was getting twisted around his fingers at night when he slept. He was crying the whole time we were shaving him and, when it was done, I cried too. Now he was bald and looked like a child with cancer; it was real. To this day, Levi likes to wear his hair long, or maybe it’s me. Long hair is the opposite of cancer.
Over the next 9 months treatment was intense. Levi started to feel the effects of the chemo; he got mouth sores, had trouble sleeping, had trouble peeing and pooping. He developed a fever, a rash, lost his appetite, threw up a lot, and became quite lethargic.
The goal of the first phase of chemo was to get the patient into remission and within the first month Levi was in remission, but treatment was far from over. This was barely the beginning. He still had 3 years to go. They said this long treatment plan has the best outcome. It was the only hope we had. We needed him to survive the treatment that was now killing his cancer.
Very early in treatment we had to call an ambulance because Levi woke up quite despondent. He was a rag doll and we could not get him to respond to us. It turned out it his blood sugar was too low; it was at 1.2, which is very low and not far from being in a coma or going into seizure. His doctors thought this was an effect of one of the chemo drugs and not a normal side effect. From that point on, I had to check his blood sugar morning and night, as well as at 3 am, each time having to do a finger poke on Levi. Thankfully we only had to do this for a couple of months. But it turned out not to be our last ride in an ambulance.
One thing we always had to watch was Levi’s blood counts. In particular, his white blood count. If this number fell too low, it would impede his ability to fight infections.To check this, they had to take blood or what we came to call a ‘pokey poke’ and test it in the lab. If the white count fell below 500, he would be what they called neutropenic and would need to go into protective isolation, which meant we would have to avoid contact with others more than we already were. Sometimes Levi’s red blood cells would be low too and he would need a blood transfusion. I always knew when he needed a blood transfusion, as he looked pale and wanted more Mommy hugs. This is one of the major effects of chemotherapy. While it is killing the cancer cells, it is also killing the immune system and therefore putting Levi’s life in danger. A very delicate balance needed to be maintained to be successful. It is a miracle that it works.
With Levi being immune-comprised all the time, he had to miss out on a lot of fun and all the things that kids should be able to experience. This is the saddest part of all for kids who have to go through cancer treatment. They miss out on so much. Levi missed important developmental milestones and because he was so young when he started treatment, I wouldn’t see the effects of the treatment until he was older and in school. And this is quite common.
My only focus as a parent at the time was to keep Levi alive and protected. The only thing I could control was his environment and to keep him as healthy and happy as I could under the circumstances. To keep him strong and healthy, I wanted to feed him, but the chemo made him throw up and not want to eat. It was a full time job getting breakfast, lunch and supper into him, only to have him throw it up sometimes. With each new phase of treatment, came a set of new chemo drugs. This meant that any strategies we had developed before to manage, may no longer work, so we had to come up with a whole new set of tricks. Most kids need to be put on a feeding tube because they lose too much weight. We were on the verge of that a couple of times, but Levi managed to avoid it.
While on chemo, they tested Levi’s heart, liver, kidneys routinely and if he ever got a fever, it was an immediate trip to the emergency room, where they did not leave us in the waiting room. We were taken into a room immediately and they took blood to test for infection and he was put on IV antibiotics. Kids have died because of blood infections, while being immune-compromised.
Even though we were not in the hospital full time, we had to go 4 or 5 times per week. Once we were in the maintenance phase of treatment, we were down to 2 or 3 times a month. We called these trips to the hospital for treatment clinic days. Sometimes they had some trouble getting blood out of his central line, so they had to ‘TPA’ it, which means they had to put some blood thinner into his line and we had to wait a couple of hours before they were able to get blood out. This happened to Levi with some regularity and added extra time to the treatments. After the blood work, came the chemo, the steroids, the intravenous antibiotics, the anti-nausea medication and, sometimes, other procedures.
One of the scariest procedures Levi had to go through was the lumbar puncture, or better known as a spinal tap. Levi was given ‘sleepy milk’ (anesthetic they gave him in his line) for this procedure. They would then take some fluid out of his spine to test to see if there were cancer cells hiding in there and in its place they would inject intrathecal Methotrexate (a chemo drug) into his spinal fluid. This got harder and harder for both Levi and I. He really fought the ‘sleepy milk’ and I would stay with him until he fell asleep. Every time, I would say a prayer and give the person doing the procedure a squeeze and say, “Have a good procedure.” Spinal taps are routine for leukemia patients, but they are a very serious procedure. He had a spinal tap about 30 times during his treatment. It never became routine for me.
By the time Levi was finished treatment in September 2010, he was 4 years old. He had spent more of his life on chemo, than he had off chemo. Levi was on chemotherapy for over 1,200 days, longer than some marriages! It is amazing these kids survive. I am still in awe of it.
Along with fighting for his life from leukemia, Levi survived H1N1, numerous viruses (RSV, HMV), numerous bouts of croup and loads of colds. He endured a couple of nose aspirations, many trips to the emergency room, blood transfusions, bone marrow aspirations, a couple of surgeries, lumbar punctures and a bronchoscopy. He’s seen pulmonary specialists, respiratory specialists, speech pathologists and sleep specialists. We did not go to malls, supermarkets, public playgrounds, public swimming pools, indoor public events or play dates. We avoided sick people. Levi had to bathe wrapped in Saran wrap and we used hand sanitizers at every turn. He had a helicopter parent. But he survived. It is a miracle.
I have not experienced such despair in my life. I was scared sleepless most of the time. It was Levi’s courage and the kindness of our friends, family, co-workers, Jamie’s Preschool, Kids Cancer Care and the staff at Alberta Children’s Hospital that carried us through. People have been incredibly generous and thoughtful to us. We have made new friends whose strength in their own struggles with cancer gave us courage and optimism to carry on. We have learned to live life one day at a time. I learned to live in the moment and learned that control is an illusion. I learned to celebrate the small victories. I would be lying if I said I am not scared. Life without chemo to keep the ‘bad’ cells away is like being a tight rope walker without a net, but we have faith that all will be as it should be and we pray for the strength to face what we need to going forward.
Childhood cancer is like war. You struggle through it and miraculously you survive. When it’s over you get up, dust yourself off and assess the damage around you. There is often a lot of collateral damage with childhood cancer. Giving chemo to a child as young as Levi can affect their brain development and their emotional well-being.
We’ve had psycho-educational and neuro-psychological testing done on Levi and they revealed deficits in Levi’s executive functioning, the region of the brain that regulates and controls cognitive processes, such as our working memory, reasoning, problem solving, planning and execution. As a result, Levi is struggling with math and spelling at school — not to mention pretty intense anxiety. It seems so unfair for a child to have to go through all of this and then have other problems afterwards.
When Bryan and I first broached the possibility of tutoring with him, Levi flat-out rejected the idea. But when we broached the idea of tutoring through Kids Cancer Care, he said, “That would be okay.” So he is now seeing a tutor Monday evenings through Kids Cancer Care’s new Education Support Program and we’re already seeing big improvements.
Levi feels comfortable challenging himself during his tutoring sessions at Kids Cancer Care because he associates it with Camp Kindle. This is a safe, friendly place for Levi to push himself and learn, without all the stigma of a regular tutoring service for him. I knew we were on the right track right away. After his first tutoring session, on the drive home, Levi turned to me and said, “I think it’s gonna’ be okay now, mom.”
Levi is 10-years-old now and has been going to Kids Cancer Care camps since he was able – around 3 years old. He has always loved SunRise day camp and is an outgoing kid – you may have noticed!
In 2014, Levi decided to give SunMaker camp at Camp Kindle a try. He had not been to overnight camp anywhere and had barely been overnight with anyone. Things started off really well. I didn’t hear anything from Levi for the first 2 days, but when I called Wednesday night, his counsellor said he’d had a rough day and he was experiencing some diarrhea. I was able to talk to Levi and he was distraught and very anxious, so I did go and pick him up Wednesday night.
Once home and having had a good night sleep and no more diarrhea issues, Levi wanted to go back to camp. At this point, we had concluded that this was not a virus, but rather Levi not going to the bathroom for a couple of days and then everything broke “loose” so to speak. They call this “camp belly.” “OK”, we said, thinking he would be able to make it the last couple of days of camp and not let this negative experience affect him.
Well Thursday night we get a call from Levi saying, “I can’t do it anymore,” and really crying and upset and wanting to come home. This really is not like Levi to be so emotionally distraught. I knew there was a bit more than homesickness going on. He has had some mild anxiety since he was little, mostly things we noticed at home and, of course, having to do blood work and different procedures. But over the past year, he had really started to become super conscious of his body and his health. Unfortunately this bout of diarrhea was so frightening and, not being in the comfort of his home, really affected Levi to the point of not wanting to go back to camp again.
This experience in 2014 seemed to be the catalyst to more serious anxiety. He worried about any different sensations in his body. This carried over into the new school year and we decided he needed some help so we got him started with a psychologist. He has been doing well and has developed more coping skills and is very aware of his situation. In fact, he is hyper aware and this, in part, is what causes his anxiety.The psychologist believes he has PTSD (Post Traumatic Stress Disorder) from all the years of invasive treatment, and so needs to process all of his experiences.
He has been handling things well so we encouraged Levi to give camp another chance in 2015 and he reluctantly agreed. I talked with the camp personnel (Jenna, Mary and Janessa) and told them all that was going on with Levi and I asked them to let him call home if he needed to. I knew this would help him to have some control over his situation. He was having anxiety that he might have the diarrhea again and have the same experience as last year. He was having anxiety that he might have anxiety, if you know what I mean.
So August 10, 2015, Levi went to Camp Kindle. The first night I get a call, he is crying and more homesick than anxious. I walked him through it and said, “Let’s stay overnight and see how you are in the morning.” Morning came and Levi is in the clinic trying to convince the nurses that he has a cough and a fever and needs to go home. Orli, the nurse, called and said Levi wanted to talk to me. He is trying to convince me he needs to go home. I try different strategies and let him know that, “If you were sick, they would be calling me to come and pick you up and you don’t need to worry about that.” After a lot of coercing, he agreed to stay and went to the activities.
I talked with Orli again and asked her if I could get Levi some extra support, especially in the evenings. About an hour later I got a call from Lexi, the head counsellor, and Sophie, Levi’s counsellor, asking me what they could do to support Levi. We talked about all the things I thought would help and they were willing to try it all and said they would be in touch. I felt good that they were really on board and working hard to help Levi. This is awesome support.
That night I got a call from Levi, crying hard and begging me to pick him up. He said “Mom please, please come and pick me up, I can’t do it. I’m a wimp.” I talked him through this and he said, “Mom tomorrow is Wednesday and that is when I had diarrhea last year.” The anticipation of Wednesday coming and the experience from last year put his anxiety into overdrive and I thought, “If we can get him through tomorrow, he would be able to stay the rest of the week.” I talked with him intensely and I explained that last year he wasn’t paying attention to bathroom routine, but this year he was and that there should be no issues tomorrow. We talked at length. I am thankful there were no time restrictions on the call. He reluctantly said he would stay the night and that we would talk in the morning.
After my conversation with Levi, I was able to talk with Sophie again and she explained everything that had happened that day and pointed out a few opportunities that she gave Levi to decide things for myself, ex., “Do you want to call your Mom now or wait until after lunch?” So Levi chose to call later, small steps but effective. Sophie said she was trying all the ideas we talked about and thought it was helping. Other than the phone call to me, he did seem better than the day before. He’d had a sad period after lunch, but bounced back and got involved with activities whole-heartedly with the support of Sophie. Just so you know, I was completely struggling at this point as well, because I didn’t want to traumatize Levi with this camp experience. But I knew he needed to conquer this huge fear to move on. If I didn’t feel Levi was supported on the other end, I would not have been able to leave him at camp.
So Next morning came, no call; after lunch, no call; Wednesday evening, no call. So of course I am thinking, “Great! This is a good sign, right?” I decided to call Sophie and she said Levi had a great day. In the morning when he woke up he said to her, “I didn’t miss home and I didn’t miss you.” She said it was funny how he said it. He also said, “I think I can make it to the end of the week.” He got involved in all the activities that day and loved archery and was really getting into the day. Later that evening Levi did call home. This is part of that conversation:
Levi: “Hi Mom, I had a great day today!”
Me: “Wow that’s AWESOME Levi.”
Levi: “I didn’t cry today and I didn’t have diarrhea.”
Me: “Good for you hon, we are so proud of you for hanging in there. I knew you could do it.”
Levi: “Guess what, I did the flying squirrel today and tomorrow I am going to do the wall climb and when you get to the top, you jump off….”
(YIKES, OK Levi. Mommy just wants to know if you are having fun, not all the details ha ha.)
There must have been about 5 more “Mom and guess what…” I could hear joy and confidence in his voice. He was proud of himself!! He had FUN and was finally enjoying himself. What a huge relief I felt for him and for us. It was so important that he make this turn and get this huge psychological demon off his back.This is big. This is a game changer for Levi. He has gained so much in this week that will give him the confidence he needs to know that he can manage his anxiety and that he can be safe in the world.
We would not have been able to make this breakthrough without the support of your staff and volunteers at Camp Kindle and, of course, the staff in the office, who we regularly talk to. I want them to know they are changing lives at Camp Kindle. Kids can develop and grow with their encouragement, commitment and support.There are small wins and big wins that will help change the trajectory of a child’s life forever. I believe this for Levi.
Thank you for this experience. We are so grateful and “Guess what?” Levi says “I want to go to camp next year!” That is a miracle!
–Cheryl Hamm, Levi’s mom
