Boy vs A.L.L. Part 2 (The Shortened Long Version)

Day 3 at the hospital. Poor little guy.

Day 3 at the hospital. Poor little guy.

 

We spent ten days at the hospital. Meeting our care team was a big help. I can't speak highly enough of Dr. Greg Guilcher and our primary nurse JoJo. We came to understand better what Leukemia was and what type Liam had. After the initial stress and fear of not knowing, being told for sure that he had Low Risk Acute Lymphoblastic Leukemia was an immense relief. His chances of survival and a full recovery are something like 97%. We were lucky compared to many of the other families we saw. He'd have chemotherapy, but no radiation.

Over the course of those ten days, Liam had blood transfusions and a platelet transfusion so his body would be strong enough for the procedures they needed to do. When he went into the ER he had no white blood cells, low platelets, low hemoglobin, and practically no immune system. Slowly, as the transfusions and medications did their work he started to get his color back and some of his energy. He started smiling again and actually interacting with his baby brother who he hadn't taken much notice of. He was a champ when he had his first round of chemo. He got strong enough that they could put a PIC line in his arm, instead of having the iv in his hand. A month later that would be replaced by an IVAD, essentially an iv port that's inserted under the skin with a line that goes into the large vein leading to his heart. This makes it much easier to administer chemo, fluids, and take blood when needed.

I can't remember if he was on the steroid yet, but we were just so happy that he wanted to eat and play with toys.

I can't remember if he was on the steroid yet, but we were just so happy that he wanted to eat and play with toys.

Brothers! I think this was the first smile Jonathan managed to coax out of him.

Brothers! I think this was the first smile Jonathan managed to coax out of him.

We'd informed a friend from church that first night about the diagnosis. So that Sunday an announcement was made. As the prayers started pouring in on our behalf my husband and I both experienced a quiet, but miraculous peace. My sister reached out to her Calgary friends on Facebook asking for meals for us. We had so much food provided we couldn't eat all of it. Church friends and strangers stepped up to help us out. I don't drive, so rides were organized to get me to and from the hospital. Someone bought me a used kindle and loaded it with books so I could read. Not that I ended up getting to do much of that. We had wonderful nurses and doctors who were so compassionate as we learned to adjust to this new world we found ourselves in. The fear and anger became smaller and more manageable.

Above pictures from top:
 Unit 1 hospital wing. Got a pass to go outside but he was still too tired to play much. The bottom two pictures break my heart.

We had so much to adjust to when we finally took him home. Learning how to clean and flush the PIC line. Giving him the medications he was prescribed including the dreaded steroid. He was on that for a month and put on about ten pounds in three weeks. At first he lost weight and then his appetite exploded. All he wanted to eat was chips, chicken or eggs, bread, and chocolate. Kid you not. We just let him eat whatever and whenever he wanted. Even after the steroids ended, his appetite was crazy and he still put on weight for another couple of weeks. His skin was stretched so tight I thought it would tear. He kept rubbing his tummy, which must have been so uncomfortable. He couldn't walk up the stairs anymore and his ankles would hurt, probably from the sudden increase in weight. His muscles and limbs simply weren't strong enough. When his IVAD was put in, one of the incisions wouldn't heal properly because his skin was stretched too tight. Only when he started losing weight did it finally close and heal.

There are three phases of treatment in the protocol they are using for Liam. The first month was Induction where they induce remission. We were in the day clinic at the hospital weekly for that to have chemo administered and procedures done. It was exhausting.

Second phase was Consolidation which involved six admissions so they could administer a giant bag of chemo over 24 hours which then required at least another 24 hours to clear his blood to a safe level. (After the first two admissions I started rubbing Frankincense oil on his back and it cleared much faster). Also, I missed his first admission due to having an emergency gall bladder removal two days before. Fun times.

I hated those bags and that horrid word "Cytotoxic" (Cytotoxicity is the quality of being toxic to cells. Examples of toxic agents are an immune cell or some types of venom, e.g. from the puff adder or brown recluse spider or Chemotherapy). He'd be stuck in his room until the chemo was done. As soon as he was given the clear he'd be asking to go walking in the hallways of the unit eager to be moving and out of his room. He was the joy of the nurses as he'd take them by the hand and bring them on his walk. There was no slowing him down. He did throw up the most during this phase though. Not fun.

We are now in the Maintenance phase, which is the longest phase at two years. As of today we are about half way through! Only 13 more appointments/months to go. This phase is measured by four month cycles. At the beginning of each cycle they administer chemo into his IVAD and then again a week later. Thankfully this one only takes a few minutes and they come to our house for the second dose. (Love the Hospital to Home program!) Liam is also put on the steroid for seven days. Ugh. But it's not too bad. Every three months he has a Lumbar Puncture a procedure for which he's put under general anesthetic and they insert a needle into his spine to withdraw spinal fluid and they also inject a small amount of chemo. This is done to make sure there are no cancer cells in his spine and to prevent them from growing. Essentially. The other two appointments are simply a physical with the Oncologist and blood work. If his counts are too low they have to postpone chemo. Oh, and every night we have the pleasure of giving our son oral chemo fromthe comfort of our own home. Yay.

Liam is still a trooper, but he's pretty much done with all of the pokes. He told me yesterday that he doesn't want any more pokes and my heart cracked. At our last appointment I was by myself and when they came to access his port I had to sit behind him with my legs wrapped around his while another nurse held them down and then I had to hold his arms which he kept thrashing as he tried to cover his access spot. It had to be sterilized three times. I felt like a traitor. I'm his Mom and I shouldn't have to do things like that. Of course once it was done he calmed right down. That's just so much anxiety for one little boy to carry around. It hurts my heart. I know too well what anxiety is like. But that's a topic for another post.

And so we take life as it comes. When I find myself complaining out loud or in my own head about our challenges I try to remind myself that there are other families dealing with so much more. Like the little boy we met while first admitted who had been diagnosed with a rare form of cancer, only the third known case in thirty years. I haven't seen him for a long time and that worries me. The families who have basically been living in the hospital, some of them for a year or more because their children have no immune system. Those grieving parents who have lost their child to cancer. And then there are the families outside of the oncology unit, rare diseases, genetic disorders, etc. Too many children suffering. And so I am grateful. Grateful that our story has such a positive prognosis. Grateful for my faith, weak as it sometimes feels. Grateful for family and friends and the support of strangers. Grateful for my boy who is strong enough to fight. For our care team (I love them). Grateful for my husband who is my rock through all of this. And most of all grateful for my God, my Heavenly Father who has stood beside me and held me up even though I have often wondered where He was.

These pictures were taken on our one year anniversary of Liam's diagnosis by the amazing Becky Noblet of Tangerine Photography. She did them as a gift and we can't thank her enough.

*This is just the basic story. Future posts will likely be more about my personal and internal experiences as the mother of a child with cancer. Some of them will be uplifting, some might be less so. I only hope to give perspective to those who have not been here (and I hope never are) and perhaps be a voice for those who have.

 

 

 

 

Posted on December 19, 2015 .