I do not recognize this child.

I pace the floor, reminded of the days I did this with a newborn.  This time around she isn’t folded up against my chest, everything right with the world.  Instead she is kicking and screaming, and I am holding her tiny hands to keep her from clawing her face and pulling out clumps of hair.  […]

I pace the floor, reminded of the days I did this with a newborn.  This time around she isn’t folded up against my chest, everything right with the world.  Instead she is kicking and screaming, and I am holding her tiny hands to keep her from clawing her face and pulling out clumps of hair.  Sometimes I let her scratch me, hoping it gives her some sense of satisfaction, one thing she is able to control.

I don’t know why she is screaming; I wonder if she does.  Her shrill shriek breaks my heart into a million pieces, the same way this cancer shattered our lives.

Mostly, we are finding our new normal around here.

Serenity sometimes takes her medicine without fighting. Mondays are clinic day, and on Tuesdays she will feel yucky from the chemo. I’ve become accustomed to Serenity sleeping a lot, and instead of holding her the entire time – although that is my preference! – when she’s asleep I try and pick up […]

Serenity sometimes takes her medicine without fighting. Mondays are clinic day, and on Tuesdays she will feel yucky from the chemo. I’ve become accustomed to Serenity sleeping a lot, and instead of holding her the entire time – although that is my preference! – when she’s asleep I try and pick up the house and do some laundry.

When Serenity asks for something, most of the time we can interpret what she wants. We know how to time her medications so that she won’t throw up (mostly), and how much activity she can tolerate during the day before she crashes.

Her hair is starting to fall out. I didn’t expect it to happen this early, and in fact I just placed an order for some cute hairbows earlier this week. She is sometimes mistaken for a boy, so I was looking forward to decorating her hair with these cute girly bows, which is so unlike me. Or maybe on some level I was fighting against what I know is coming. Trying to pretend that our life isn’t the way it is.

Serenity is eating fairly well. Some days she barely touches her food, other days she will eat 2 eggs and 2 bowls of cereal all in one sitting.

We have taken her out a few times these past few days. If we are out of doors and don’t let her get too close to others, it is pretty safe and she seems to enjoy being out of the house. Today she spent all morning in the Kelty backpack while we took some of the kids to an outdoor festival. She had a few periods of crying; overall I think she had fun. She only has one more week of steroids, and then she gets a week off, so I am looking forward to that for her.

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 […]

 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.

Another week, another clinic visit, another long day of battling the leukemia demons

Serenity didn’t feel well this past weekend. We spent most of Friday evening at the hospital. Her hematocrit and platelets were high enough that we went home without a transfusion and she spent the rest of the weekend sad and feeling poorly. We gave her Oxycodone several times to manage the pain. […]

Serenity didn’t feel well this past weekend. We spent most of Friday evening at the hospital. Her hematocrit and platelets were high enough that we went home without a transfusion and she spent the rest of the weekend sad and feeling poorly. We gave her Oxycodone several times to manage the pain. Sunday night we noticed blood in the dressing covering her port catheter, and we called Home Health to come check it. After conferring with the oncologist, the nurse decided that it was ok since we had an appointment at the Oncology Clinic Monday morning.

Monday morning we made the hour and a half drive to the hospital. We had been told that Serenity would be having another bone marrow aspirate, so she wasn’t allowed to eat after midnight, and couldn’t have anything to drink after 9 a.m. At about 12:30 they told us that there had been a mixup, and her procedure had been canceled but no one had told us. The bad news was that she had fasted for nothing. The GOOD news was that the reason her procedure had been canceled was that the level of cancer cells in her bone marrow had dropped to 2% the week before. (The target was less than 5% so 2% was GREAT.) This means that she is responding to the chemotherapy even better than expected. We are so happy to have some good news!

Her blood results came back and her numbers were going back down. The doctor said they weren’t low enough to require a transfusion, but they would surely reach that point over the next few days, so we decided to transfuse anyway. Monday she spent an hour getting a platelet transfusion, and then we made the long drive home, having been at the clinic for more than 5 hours.

This morning I drove back up to the hospital for her red blood cell transfusion. We didn’t do it Monday because it takes several hours for the lab to deliver the blood once it’s ordered. So we spent another 4 1/2 hours at the hospital today while she received her transfusion. She handled it really well, and slept through most of it, despite peeing through her diaper and clothing and soaking my lap! After her transfusion it was time to take off the dressing on her port catheter, a process she HATES. She had been so mellow the whole time we were at the clinic but when they started to remove her dressing she screamed at the top of her lungs. It breaks my heart to watch her suffer. She screamed, “Stop! Mommy! Stop!” with huge tears streaming down her face, but thankfully it only took a few minutes. Once the bandages were off and the needle was out she calmed down. She will have to go through the process each week of having the needle inserted and then later removed, but in a couple of weeks it will be reduced to (hopefully) once a month rather than once a week.

In the beginning when we were recounting the story of our diagnosis I would plaster a big smile on my face and reassure people that “we had the good form of leukemia,” that we were lucky because our leukemia has a high cure rate. All of which is true. And somewhere in the back of my head I expected that life wouldn’t be a whole lot different, because we were so lucky. Serenity hasn’t lost her hair yet (she will), and despite being bone thin and emaciated, she is cute as a button and people who don’t know her well don’t know how sick she is.

What I am only now starting to realize is that even though she has the most treatable form of leukemia, this is going to be a long and arduous journey. Even though she is responding to treatment, each visit is filled with tears and pain and my heart breaking just a little bit more as I have to hold her down and explain to her that it won’t hurt for long, and we have to do it in order to help her get better. She doesn’t understand why she is suddenly being force to undergo surgery, lumbar punctures, shots, vomiting, forced medication, mood swings, the inability to stand any more, bandages being put on and then pulled off…the list goes on and on. All she knows is that life is suddenly very very different, very frightening, and she doesn’t know who to trust anymore. She freezes up when anyone enters the room, because she doesn’t know whether this person is going to cause her pain.

I recently heard the following analogy:  Let’s say there is a soccer game, comprised of 2 soccer teams.  Each team has 12 to 15 players.  Before the game is over, 5 or 6 of those players will be dead.  Would you want your child to play soccer?

Serenity stand a very good chance of surviving the soccer match.  But watching the game is going to be painful for all of us.

I think I’m in that Anger stage

I’ve been up a lot of the night with Serenity, she’s just not feeling very good.  I’m realizing that two and a half years is a really long time to keep this up.  I’m angry at cancer and whatever caused this to happen to my little baby.  I’m really pissed off that because of this […]

I’ve been up a lot of the night with Serenity, she’s just not feeling very good.  I’m realizing that two and a half years is a really long time to keep this up.  I’m angry at cancer and whatever caused this to happen to my little baby.  I’m really pissed off that because of this stupid disease she is sitting here suffering in ways I cannot imagine. 

serenityer.jpg

As is usually the case, this isn’t the only thing going on in life right now.  I wish I could make everything else just stop so I can deal with this and help her.  Everything sucks right now and motivation to work on improving it is hard to find, I can’t even find motivation to go mow the stupid lawn.  Not to mention all the crap I’ve got to deal with.  I want to throw in the cards, give it all up and start over (but keep all my kids – and their health).  Why didn’t I become an Oncologist so I was prepared and able to actually do something about this damn disease?  Instead I’m just a stupid programmer that helps businesses do stuff better – how lame is that, what is the point in that?  I look back and feel like my whole life has been useless and hasn’t helped anyone out – I’m 35 and only now becoming intimately aware of this disease and all the other people that have suffered from it. 

serenity2ndclinic.jpg

How could I have lead such a trivial life?  How could I have been so completely ignorant of such important things?  It’s hard to consider much of anything to be of consequence at this point.  It seems that life and our pursuits are really just a big joke.

If you take anything away from reading my blog, please, take this: In the blink of an eye, almost everything you think is important in life can become meaningless and stupid.  If you aren’t in this position, be grateful, know that you are dearly blessed and pray it doesn’t happen to you.  Be mindful of focussing too much on things that aren’t important – when it comes down to it, your family is all that really matters.  Don’t be like me and require your child’s life to be at risk to realize it.  The self-loathing, self-pity and self-judgement really isn’t worth it.