This is Day 9 of my baby, Serenity, being diagnosed with and treated for Leukemia. Day 7 is here.
It has been a whirlwind week. While it was only seven days it feels like we were there for months – a lifetime even. In some ways it’s good we spent a full week at the hospital, it was long enough that everything prior to it is kind of a blur in our minds. In the last week we became well trained in the ways of Oncology, Blood Chemistry and Nursing. We now speak a different language, not quite fluently – that will come – and we are now able to do things we’ve never tried before. Things like creating and working in a sterile field, flushing a Port Catheter, extensive drug preparation, drug protocol management and on and on. These things have now become commonplace for us and we realized how alien they used to be when our 17 year old daughter was trying to follow and understand what we were saying and doing.
In short, we are now Cancer Parents. We have new priorities, new stresses, new tasks and lots of new rules. Most of all, lots of the old things that were stressful just aren’t critical anymore. What matters most now is keeping our baby alive and helping her get cured. It’s interesting the way life changes and we adapt. Having a child with cancer is hard, but it’s worlds better than not having that child!
It hasn’t been easy being home. Serenity’s Oncologist noted that we seemed very apprehensive when we were checking out of the hospital. We explained that the reason for it was that we were leaving the constant care and safe haven of the hospital and we were feeling the burden come on our shoulders to keep our baby safe and healthy. As parents of eight children, we’re seasoned pros at raising babies but this is something completely new and frankly extremely scary.
Once we left the hospital it was like we were entering the world for the first time. Everything seemed different yet nobody realized it but us. It’s like we’re living on the same world as everyone else but we’re on a slightly different plane. I think we now live in a parallel universe with other cancer and crisis families. Families like my cousin Corrie , our dear friend Amanda, or @tmartini on twitter – families that live with kids in crisis. I suspect they see the world in the way that we are now viewing it – and we are looking to them for guidance on how to navigate it.
In the last week I came to look at much of the web 2.0 technology that I’ve become accustomed to in a very different way. I’m now thinking about and exploring ways to use that technology to help families with kids in crisis. I’ve mentioned before that we are working on creating The Serenity Foundation to help families who find themselves in medical crisis with their children. At first our thoughts were mostly around money and while that remains a big part of what we want to do, we found that it was extremely vital to us to be connected to friends, family and community through the internet. With help from friends, we were able to rapidly create a central point of information about our situation and, most importantly, not have to field 100 phone calls a day explaining what was going on and constantly reliving the emotional turmoil. The emotional, financial and motivational support we received initially and continually throughout the week from our online communities REALLY helped us to soldier on. We want to find and create ways to help other families find that connection when they are in a similar situation. I’ll be talking more on that later. For now, if you are interested in volunteering to help create a centralized social networking solution, please let me know.
Now for more of an update on Serenity. We got home on Friday and spent most of the day setting up a sort of nursery in the Living Room. Serenity can’t walk right now, her legs won’t support her weight and they are in pain from the Leukemia and chemo. We didn’t want her isolated from the family so we purchased (with her donated funds) a new twin bed to be the center piece of the Living Room and set up places for her toys and entertainment. We moved the TV into the Living Room along with several couches and set up several storage locations for all her medical supplies. Now she has a small living area in the central part of the house – she won’t be isolated in a bedroom which would lead the other children to feel they were abandoned when we were tending to her. Her bed is off limits to the younger children so she can be safe, otherwise her 3 year old twin siblings would surely be jumping on the bed and doing other things that could lead to her being hurt.
Once we had the room set up, we were exhausted – and she was nauseous. She threw up several times, which continued into today. We had a long night without much sleep. This morning the home healthcare nurse came by and went over their services with us and made sure we knew how to flush her port. We then headed out to pick up more drugs for her (she and Adria stayed in the car while I ran in). After that, the other kids came home (except for Kaniho and Sarek who are having too much fun staying with my brother) and we explained several new rules to them – which were promptly broken and repeatedly reinforced.
It was very nice to have most of the family together again! However, we once again realized that one week in the hospital was a lifetime. The sheer noise level increase and utilization of child energy was a little overwhelming! We’ll get used to it quickly, but it was very different then just having mostly silent (in comparison) Serenity with us. We are very grateful that we have a very responsible 17 year old daughter, she offered to babysit so that Adria and I could have our first break in over two weeks. We went to see the new Indiana Jones movie and hurried home. We gave Serenity her late night drugs, which caused her to throw-up again, and settled everyone in bed.
I was too tired to post last night, and I’m half dozing while I write this. Hopefully tomorrow will be a little more calm after church (I’m taking the other kids while Serenity and Adria stay home) and we can get some good napping in! I also hope to catch up on responding to all the email, blog posts and other well wishes from the last week – if I haven’t gotten to yours yet, I apologize – things are still a bit crazy, but we’re very grateful for everything we’ve received!