4 January 2013

Why do we fall? So we might learn to pick ourselves up.

Early Wednesday, Keian woke from sleeping calling for us. He immediately started vomiting and told us he needed to run to the bathroom. This continued until I decided that it was time to call the hospital. To make a very long day easily understood - Keian was admitted to the hospital for 2 reasons. He was positive for Clostridium Difficile, which is basically a bacteria that causes severe stomach pains, vomiting and diarrhea. While he was in the clinic, they drew blood and discovered that his liver enzymes were incredibly high - extremely high. Their major concerns with these results were that Leukemia may have relapsed in his bone marrow, or that his liver has been damaged by the chemo. The only thing worse than hearing our child has cancer is that the cancer has relapsed. This was an unplanned admission, so it was the one time we weren't prepared with our overnight bags. Keian asked for Daddy to stay, as one of us had to go home with Joren. I am angry...beyond angry. I drove home that night so angry and hurt that I had to pull over. I literally couldn't stop the tears. I've been asked if we've been praying for Keian and the first thought that comes to my mind is that we haven't been as much as we possibly should. The only way that I can describe the feeling is anger. I'm so angry that such a beautiful little boy is forced to undergo all of this on his little body. I'm angry that he's missing out being with his friends. I'm angry that he's sick and I'm not. I'm angry that he may never have the chance to be the Daddy I know he'd be, due to the chemo. There's no other way to explain this other than that. I've had a rough couple of days trying to put all of this information together. We're basically thrust all of this information and expected to package it neatly into a box and move on. "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."

The night went over with no problems - Keian was started to Flagyl for the C-Diff and continued his chemo as usual. Thursday morning, as I was getting ready to pick him up from the hospital, Ryan called to tell me that one of his test results came back from November. This was a test they ran due to the MRI results that showed cloudy areas in his brain. They were concerned that the changes may not only be from the Methotrexate toxicity, but perhaps from an existing lipid storage disorder. Keian's results came back abnormal, which means he is positive for the disorder. Not only does this bring on additional health concerns for him, but if it turns out that it is an inherited disorder, Joren may have the same results. If this is the case, they will be unable to use his marrow for Keian's transplant. Joren and I will be tested to determine the genetic line.

today, we were told that his treatment plan will change slightly due to nature of his Leukemia presentation and that they will now be treating him as the extremely high risk. This also means that he will get largest dose of the best drugs they have. While we await results from his bone marrow biopsy, which will likely be by Monday afternoon, we will also be admitted on Tuesday for 6 days. During these 6 days, Keian will receive chemo drugs that are known for damaging the kidneys and liver and therefore needs to be watched 24 hours a day. After these 6 days, he will be able to come home for 2 weeks. He will then be readmitted for 1 month, in order to receive high dose ARC (cytarabine) - this given at high doses, we're told has serious side effects, one of which is a 5% chance of mortality, due to uncontrolled infection. After this, he will start his brain and total body radiation to condition him for his transplant. This will completely strip him of his immune system with zero chance of recovery without rescue stem cells. We've been told that within 3 weeks, we will be admitted for a a minimum time of 3 months and will not be able to leave his room during this time.

It truly feels that our world is crashing in upon us. We've remained strong through all of our struggles and he has been the most incredible fighter - I couldn't have asked for more. We have been and will continue to remain positive and shine that positivity in our everyday life. Someone told me the other day that sometimes you have to fall, so you can pick yourself up and become strong again. This is truly what's happening. I look at him with such admiration, but yet at the same time, it breaks my heart. He is so tired and weak. I watched him tonight struggling to even get off the couch and he can no longer get off the floor by himself. The pain he's feeling in his legs, as well as the decreased strength due to the peripheral neuropathy has not only damaged his physical body, but also his spirit. But yet, throughout all of this, he still finds the good. Tonight, as I was rubbing his legs, I couldn't help but tear up. He looked at me and asked me why I was crying. I told him that I was crying because I wished he wasn't sick. He responded with; "I just keep taking my medicine" clapped his hands and said "then I'll be all better".

Tomorrow, we will wake to see a smiling little boy, who reminds us every second of every day what it truly means to be beautiful.

"You never know how strong you are, until being strong is the only choice you have"


  1. Thank you for sharing Keian's story and thank you for allowing me to pray for him and all of you. Please know that I am praying for all of you because at this point, that's all I can do and all I can offer. Just know also that all of you are loved very much.

    Grandma Sheila

  2. Chantal, I'm praying for Keian every night. I don't know how you are getting through this, but you are. No child should ever have to go through this. He is such an inspiration.