11 August 2013

Celebration, Devastation and Determination...

There has been a lot that has taken place since July 1st, more than we expected and even wanted. Since there has been so much, I though it best to concentrate on the important events to bring everyone up to speed.

July 1st - On Canada Day, despite still technically being in isolation, we still managed to celebrate in our own little way. We decked out Keian and Joren in matching Canada Day Roots shirts and gave them flags to wave. Keian was happy to have a flag and Joren, well, was happy to have anything to shake around. The problem was trying to figure out how to celebrate while limiting Keian’s exposure to the general public. We ended up in Cloverdale to watch the fireworks from the car. We found the perfect vantage point just in time. Keian stood on the passenger seat and stuck his head on the roof of the car. It was Joren’s first experience with fireworks and he watched in drooling awe. I should mention that we also treated ourselves to maple leaf cookies, you know, in the spirit of the day.

July 9th - This was an extremely important date for us. Besides 4 days short of the 100 day post transplant mark, that day, Keian would have a bone marrow biopsy and a lumbar puncture to determine if he was still in remission, Additional samples were taken for another Chimerism test. The preliminary results of the LP came back as negative; so far it was 1/3 of the good news that we were waiting for. They informed us that the bone marrow was still technically in remission as it was below 5%. What we didn’t know was that it had gone from .41% post transplant at day 30 to 4.7% post day 100.

July 15th - I went back to work; taking the first steps to getting back to a more normal family life. It was emotional for all, but it reminded us of our strong family bond and that we were never truly apart.

July 16th- Two items were mentioned during his clinic visit. The marrow showed abnormal cells, but they didn’t match his original leukemia cells, nor did they resemble normal cells. It was assumed that they were premature white blood cells from Joren. Chantal and Keian were also told that his CVC would be taken out on July 30th; he would finally be wireless.

July 18th - The final third of the long awaited good news came on this day. Chimerism tests confirmed 100% Joren.

July 22nd - Chantal and Keian delivered some amazing Thank You cookies designed, and donated by Sherrene at The Sugar Tree. Chantal and I had noticed Keian hadn’t been eating for the previous 4 or 5 days and that he had quite a few bruises on his legs. This immediately caused concern, as that was one of the physical symptoms that showed there was a problem at his initial diagnosis. He had been very active, which gave a reasonable explanation to push those thoughts away. His WBC were up this day to 8.5; nearly double what they had been the previous week. This is hard to judge, as we have seen his counts hit the extreme in different directions. Chantal questioned this and they assured her there was nothing to worry about. “These numbers are completely normal and there is nothing for you to worry about. You’re just not used to seeing normal”. We discussed Keian's graduation from treatment and all that it entailed and left feeling relieved. Perhaps even a little confident.

Monday, July 29th – This started off like any other day. We were beginning to relax into a somewhat normal life, reminiscent of what we had prior to Keian’s initial diagnosis. Things seemed familiar, and we both let our guard down. Here we had a kid who had fought so hard for so long and walked away from Chemo, radiation and a bone marrow transplant with a smile. I was starting my third week back at work, while Chantal and Keian would go in for Keian’s Monday appointment at the Oncology Clinic. The original plan was for me to take the 30th off to be with Keian when he finally had his CVC removed. As the saying goes; “The best laid plans of mice and men often go awry”. Chantal and Keian had just left the oncology clinic, and were about to leave, when a nurse came running towards them and told them they had to come back, something was wrong.

The Leukemia had returned, stronger than ever. This time around, the blasts were at 84% instead of the original 80% and had grown so quickly compared to before. The relapse happened in the marrow, as well as a few cells that were proven present in the CNS. We were shocked and devastated. He looked so healthy, just like how he used to be. How could we have guessed that this monster was once again stirring inside of him?? I left work immediately after receiving Chantal’s call. I was scared and numb at the same time. Just when we thought that we were nearing the light at the end of the tunnel, we were pulled back to darkness

Without going into too much detail on this post; we were told that the chances of a cure were slim to none. We still hold onto that chance and will never let go. The plan is to get him back into remission and start him on Nelarabine, as a last resort in an attempt to keep him in remission. It works for roughly 33% of patients and in fact the Doctors told us of 1 patient, who had relapsed after a bone marrow transplant in their CNS has been in remission with this drug for the last 7 years. They also do not expect a long term remission for Keian. We believe, hope and pray otherwise. He has fought so hard and grown up so much this past year and we will not see his efforts left to be in vain. It has definitely been emotional for everyone who has ever known Keian, but it’s especially difficult to be at Ground Zero. We are thankful for the immense support we have received so far, in the forms of visits, meals, letters and more. Without you, this 3rd, and hopefully final, round would have been almost too much to bear. We are down, but not out. We do not give up, we endure. Keian’s blasts are currently down from 84 to 0.80 and we pray that the number reaches 0. Once again, we become familiar with an IV, cramped quarters and that feeling of utter helplessness as we wait bedside for his daily blood counts. Keian states that he’s done it before and will do it again. Some days, he seems bored, sad and angry. I don’t blame him; once you get a taste of freedom, it’s hard to get locked up again.

August 8th - Elaine Yong from Global BC came to interview us at the hospital, which aired at 6pm that same day. Although we share Keian’s journey on this blog, and through social media, it meant a lot to see his story reach out even further, just as he has touched so many with his strong will and brave heart. You can view the interview below.

I wanted to end this post asking you to help us keep up this fight.

You can join in his fight by following us on Twitter

Alternatively, you can join us on Facebook at Team Keian and Lets pray for Keian

We have never had an easy time asking for help; I think it's difficult for anyone. But, in saying that, we know we can't do this alone. If you would like to donate to Team Keian, you can do so at Team Keian vs. Leukemia Round #3

1 comment:

  1. Thank you guys for doing this update.We think of you r family everyday. You are all strong and amazing.