Cancer conversations, Gratitude and being a Cancer Family

 This is Day 19 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 17 is here.

 My last post came from the depths of the bottom of the emotional well.  I had landed there with a huge thud and was experiencing emotional pain that was entirely new for me.  The responses to that post in comments, in email, in person has been an overwhelming outpouring of support and reassurance.  I know from personal experience that comments aren’t always read through so I want to repost one of my comments on that post.

OK, I’m doing MUCH better – I pretty much had a breakdown last night in which I was just feeling sorry for myself and not thinking logically.

Thanks to those of you who commented with words of support and reassurance, I appreciate it. I do know that what I do is valuable and I do see the connections for what I do in helping doctors etc. Thanks to those of you who also see that and pointed it out.

It was an anguishing night for me last night and I probably shouldn’t have blogged what I was feeling/thinking, but I committed myself to recording as much as I could about this process and what we were going through. Several people have commented saying that they appreciate our openess into our experience and for sharing raw emotion.

Today I’m back at it, but I have even more detailed plans of how to use my skills and knowledge to better serve the Cancer community. I’m actually pretty excited about a lot of it. I’ll be sharing more on that soon.

Thanks again everyone.

This whole process is a scary, emotional journey and I want to share it, it’s mostly for me – it helps me a lot to work through things here, to share things and get my feelings off my chest.  But it’s also for those who will come down this path after us, I hope that in the future other cancer parents will find these posts and will be able to find some comfort and understanding for what they’re going through, as Adria and I have found on other blogs from cancer parents.  It’s also for those of you who haven’t experienced being cancer parents – hopefully by sharing in our journey you’re able to feel a little more blessed in your own lives that you haven’t had to deal with this.   I am very thankful for the supportive comments, email and other communication that came from the previous and other posts, I’m more able to deal with this because of all of you. 

Today I had a great conversation with a fantastic Lady whose daughter had retinal cancer (I can’t remember the name of the cancer).  Her daughter had to have her eyeball removed when she was a baby, she is now almost a teenager.  We shared stories of dealing with initial discovery, the emotions that occur and reactions to them.  We also discussed ‘owning’ your cancer (or in our case, owning your baby’s cancer).  She has totally owned her child’s cancer – on her desk she has several eyeballs, I think they were created to be Halloween decorations, but for her they are symbols of her baby’s challenges and triumph.  We talked about The Serenity Foundation quite a bit and our plans for it, she had some great ideas and input and I hope to have her involvement as we put the foundation together. 

Part of mine and Adria’s evening routine has lately included going through comments, posts in support of Serenity and reading through the blogs/sites of other kids with Leukemia.  We read every comment and post we find and share and discuss them, and are grateful for every one of them.  When we visit the sites of other kids with Leukemia, we often show the pictures on it to Serenity and discuss it or share it with the other kids.  Tonight we were reading through the story of Isabel, a girl who is now 5 and was diagnosed with Leukemia when she was 3.  Her mom has kept a blog for the last two years and has written over 400 posts in the last 2 years.  There are several very emotional and moving posts on it, but one of the most recent ones really struck a chord with me.  In this post she talks about simply breaking down after realizing just how abnormal their ‘normal’ has become.  Please go read it, I can’t do it justice here.  I felt a small twinge of what she describes yesterday as Serenity just looked at me while I was giving her her medicine – and she just opened her mouth and took it.  She gave up the fight, just accepted the nasty medicine and said “all done?”.  On the one hand it was nice to not have to fight her on it, on the other hand it kills me that she has to accept it.  Gibson, our 7 year old daughter, took over my computer and read through about a years worth of Isabel’s blog.  She read for about an hour and a half and said she was sad that Isabel was sick like Serenity but that she thought Isabel would be ok.  She was elated when I told her she could send Isabel an email and then she proceeded to write it all herself.  This is our life now – the life of a family dealing with childhood Leukemia.  In many ways it has brought us closer together.

On a different note, I want to again express gratitude to all those who have donated through the ChipIn widget.  Those donations have made a HUGE difference for us as a family.  Donations have ranged from $5.00 to an anonymous donation of $4,000.00 that brought it to the goal of $10,000.00.  Every one of these donations, from $5.00 and up has meant a great deal to us and we’ve been astounded at the love and generousity that have been shown to us by each of these people.  It has thus far kept us from feeling a financial crunch and has allowed us to adapt Serenity’s environment to fully accomodate her.  I honestly don’t know how we would have paid for drugs, gas and dozens of other things up to this point were in not for the help of all of you.  Now, as we stare at a rapidly growing pile of bills that currently total about $45,000.00 and increase daily, Jesse (our good friend who initiated the ChipIn effort) and others are talking about increasing the goal and redirecting efforts to try to cover our growing medical bills.  I can’t tell you how grateful we are to all those who have helped keep this crisis from crippling our family.  

Now for an update on Serenity.  Tonight she threw up again for the first time in a couple days.  She had been doing so good at keeping everything down and at dinner she had quite an appetite, she ate and ate.  About 30 minutes after dinner, thinking that her nausea must be gone for the time, I got her evening medications ready.  Usually, I would give her a dose of Zofran to calm her stomach and wait half an hour to give her the rest of her drugs.  Thinking she was feeling good, I decided to make it easier on her and only make her take them once.  So, I put together a cocktail of 5 different drugs and loaded it all into a syringe.  I put the syringe in her mouth and as soon as I had pushed a tiny bit into her mouth I could tell she was going to throw up.  Because I thought she was fine, I hadn’t gotten anything ready in case she threw up so I had to grab her and run to the sink, she ended up with it all down the front of her (and me).  Once she was settled, I cleaned her up, gave her a sponge bath and then Zofran to settle her stomach.  Half an hour later she was able to take her drugs and keep them down. 

Coming back to the begining of this post, one of the things that we discussed in the conversation I had today was mortality.  When Serenity was first diagnosed with Leukemia it was an incredibly scary thing (still is), we didn’t know if that was going to be our last day with her or what.  I didn’t think I could deal with losing a child like that, I couldn’t even imagine it.  Now, almost 3 weeks later, I’m in a different place.  I don’t think she’s going to lose this battle, I think she is gonna kick cancer’s butt!  But, if she lost the fight, while I would be devastated and torn up by it, I think I could deal with it.  I think it’s pretty messed up for a parent to be forced to come to that realization – I also now know several parents who have had to.  It’s kind of liberating.  I’m prepared to deal with losing this fight – and that makes me all the more committed to NOT losing it.  It turns the cancer more into a thing that we’re battling – instead of picturing it as a fight for her life, I can picture it as a fight against cancer.  That might not make a lot of sense to most people, but I think it will to parents who have been here before us.  On that first day when we found out she had Leukemia, I prayed for more time with her, prayed she wouldn’t be taken yet and vowed to do everything I possibly could to get her through this.  I still pray for that and still vow that.  Two and a half years is a very long, very uphill battle and with this new realization I feel I’m now fully prepared to take it on.

The story of Serenity’s battle with Leukemia begins here.

UPDATE: Day 23 is here.