Life…is mostly good, kinda. Sorta.

We wake up in the morning and give Serenity her meds. She still fights it, but it’s getting easier. I hate holding her little hands and body still and then trying to shove the syringe in the corner of her mouth. If we hold her head at just the right angle, sometimes […]

We wake up in the morning and give Serenity her meds. She still fights it, but it’s getting easier. I hate holding her little hands and body still and then trying to shove the syringe in the corner of her mouth. If we hold her head at just the right angle, sometimes she doesn’t throw up. When she does we have to start all over.

After the medicines have a chance to start working (we always give her anti-nausea med first), she can have breakfast. Sometimes she’s hungry. Most of the time she’s not.

We spend the day either perched on the bed that’s parked in the living room, or sitting in the recliner with Serenity on my lap. She dozes off and on sporadically, and watched the other kids making messes playing. She’d like to join them, but she can’t stand up. Occasionally she will ask to sit on the floor nearby. The kids are pretty enthralled by her new toys and she does a pretty good job of sharing them. (And I try not to panic about how often Indigo puts the baby bottles in her mouth.) We go through a lot of hand sanitizer around here.

Lunch is a lot like breakfast, and Serenity will usually eat. Occasionally she surprises us by throwing up unexpectedly.

Afternoons are like the mornings except the house is trashed and everyone is crabby. I vacillate between tidying up or turning a blind eye so that I can continue to hold my sick girl, the only thing I really want to do. I don’t want to leave the house, I don’t want to be alone, I just want to hold my little girl. As much as possible.

I watch the clock until Phil comes home & then we eat.  This week people from our neighborhood are bringing us dinner.  It’s so nice to not have to worry about what to cook.  Dinner is a pleasant time; the whole family is there and I enjoy just watching them and listening to them.  After dinner there is more cleaning up, and then the kids get ready for bed.

I snuggle Serenity some more, say a prayer of gratitude for every moment I have with her (with every one of my children), and then I fall into bed, unreasonably exhausted from a day of baby holding, nose wiping, and vacuuming.  It’s mundane, but I’m so glad to be a mother.

Today I’m angry.

I know all about the stages of grief, yet somehow I expected some of them to pass me by. What point is there in bargaining, or denial, or getting angry?
This morning a neighbor took the younger kids for a few hours to play, and I spent some time downloading photos to my laptop. […]

I know all about the stages of grief, yet somehow I expected some of them to pass me by. What point is there in bargaining, or denial, or getting angry?

This morning a neighbor took the younger kids for a few hours to play, and I spent some time downloading photos to my laptop. It was a bad idea, because seeing all the photographs has allowed me to be really angry. I look at our faces when life was normal, when no one had cancer, and when my biggest worry was how to keep my kids from bickering. And I wonder why didn’t we appreciate it just a little bit more? And I wonder why did this happen to us? And I wonder whether we will ever feel like regular people again.

I think that life will always be divided into Before and After. Before I felt so overwhelmed, so helpless & frustrated. And I wondered when life would be full of joy and not trials. I never dreamed we would learn the language of cancer and chemotherapy. I worried about how to pay the water bill; I didn’t worry that one of my children would die.

When I look at those pictures from the past few years, I’m really angry that I had no sense of what life had in store for us.

Living with Leukemia: Serenity’s first Oncology Clinic visit

This is Day 11 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 9 is here. 
I HATE Cancer.  I cannot stand what it’s doing to my baby, it rips me up inside every time she is affected by it.  Today was one of the worst, second only to dropping her off for surgery […]

This is Day 11 of my baby, Serenity, being diagnosed with and treated for Leukemia.  Day 9 is here. 

I HATE Cancer.  I cannot stand what it’s doing to my baby, it rips me up inside every time she is affected by it.  Today was one of the worst, second only to dropping her off for surgery on Sunday.  I think any Father can understand (but hopefully hasn’t had to experience) the feeling of helplessness, frustration, anger and impotence of watching your child suffer and being completely unable to do a single thing about it.  A father is supposed to be able to keep his children safe from harm, he is the protector and the provider.  Cancer completely robs a father of those abilities.  How does a father spurn an invisible, untouchable and deadly enemy?  It forces you to do things and allow things to be done to your child that you would never do in real life.  Seriously, what father would hold down his baby, force liquid into her mouth that he knows will probably make her puke instantly – and when she does puke, as soon as she is settled, you force the same thing again – yet in the last week I’ve done it dozens of times to her. 

Today I watched and held Serenity still as they gave her drugs to put her to sleep so they could shove needles into her back to inject poison and her hip to extract bone marrow.  I’ve seen people stoned many times before – once she was clearly stoned out of her mind it didn’t really bother me.  Then they gave her drugs to put her to sleep, she was sitting up, leaning against me and it was simply as if she had taken a nap.  Then I laid her down – and that was the bad.  It wasn’t like she was asleep – it was like she was dead.  Her eyes were wide open, she was quite stiff, and it totally reminded me of the only time I’ve held a dead person.  It completely freaked me out – I had just stood by and helped as they apparently killed my baby.  I knew intuitively that she was fine, that it was a simple procedure that the doctors and nurses had done many, many times.  But mentally I had just watched my baby die, it took me a bit to get past it.  I didn’t, couldn’t mention it to Adria, she was a little freaked out by it too.  I hate that Cancer made me allow, even assist, in making that happen.

Of course, she was fine but the point remains: I hate Cancer and what it makes a Father do and allow.

On an easier note, we had Serenity’s hair cut today.  Her long hair was beautiful but it got in the way every time she threw up.  It was hot and frequently sweaty and is going to fall out very soon anyway.  So today she got a bob.  It’s different but quite cute! 

serenityatclinic.jpg

And on a happy note, after she had her intravenous chemo treatment, her bone marrow aspiration, her lumbar puncture along with her spinal chemo tretment, and new platelets – she had her port de-accessed.  That means she had the dressing, tubing and needle removed from her port – now her chest is clear and the only unusual thing about it is a bump in her chest above her heart.  She is SO happy and proud of that! 

The other cool thing she got today was her “Courage Necklace” which is a cool thing that the Child Life people at the hospital do for the kids.  They get a necklace with beads on it that spell out their name and they get a particular bead for different things they’ve done for their treatment.  There’s one for an ambulance ride, one for chemo, one for surgery, one for getting a port and about 30 other things.  Today Serenity got about 15 beads (too bad they don’t have one for puking, she’d have about 70 of them)- she’s been through a lot! 

I’m SO glad that our baby is still with us, I’ll have to watch all the events I’ve described here happen repeatedly over the next 2 1/2 years until she is cured – and I’ll do it gladly.  But I still HATE Cancer.

Our first visit to the Oncology Clinic made for a really long day.

This morning started off poorly when we were racing around to get ready to head to Salt Lake and Serenity threw up all her medication and had to be redosed. It meant some shuffling to get the other kids where they needed to be, but once that was done things settled down. And […]

This morning started off poorly when we were racing around to get ready to head to Salt Lake and Serenity threw up all her medication and had to be redosed. It meant some shuffling to get the other kids where they needed to be, but once that was done things settled down. And Serenity got her hair cut! (pictures to follow when I can figure out how to get them off of my phone)

I was a little sad to see it go but I felt it needed to be done to make her more comfortable and to help her prepare for the fact that her hair will fall out in the next 2 to 3 months. She looks pretty adorable and the cut suits her I think!

This morning we headed to Primary Children’s for a 12:30 appointment at the Oncology Clinic. We got there a few minutes late and the receptionist informed me that we needed to go back downstairs to Registration and get paperwork there first. There was a big line and whole lot of sick people so Phil took Serenity back out to the car to get a mask so she wouldn’t be exposed. It was almost 1:00 when we got back to the clinic & she had her blood drawn. While we were waiting for her results the Child Life Specialist came by and played with Serenity and gave her a little necklace with her name spelled out in beads. Each bead represents a procedure or milestone and she started out with 12 beads to represent all that she has already been through!

Serenity had another dose of chemotherapy and then we were sent down to the Rapid Treatment Unit where she was scheduled for a lumbar puncture and bone marrow aspirate. We had to stop at another Admitting desk and get more paperwork. When we got to RTU they told us that the clinic had just called and Serenity’s platelets were back down to 5 so they needed to transfuse her before doing the procedures. I should add here that Serenity hadn’t been able to eat anything since midnight or have anything to drink since 11:00 in order to prepare her for these procedures. It was now 3:30 and she was hungry and tired and getting fussy.

We sat in the infusion room waiting for her platelets to arrive. We had the unfortunate luck of being seated right in front of the refrigerator, so that every time someone got a soda or juice from the fridge Serenity would ask for one, and then start to scream when I told her no. To make matters worse someone in the room had reheated leftovers in the microwave, so the whole room smelled like Chili’s. I was starving and I had eaten more recently than she had! Phil sat with her while I snuck down to the cafeteria for a bite, but they were closed for cleaning.

When Serenity finally finished receiving her platelets it was about 5:30. The RTU was closed for the day so the doctor suggested we have her sedated in the clinic and have the procedures done there. She was unhappy and crying when they sedated her. It was so strange to see her eyes jumping around as she was losing consciousness. Phil & I chose to step out of the room for the procedures. I had a strange feeling watching her fall asleep and didn’t want to be there. Her procedures didn’t take long and then we came back in the room while she woke up.

Serenity stayed on the monitors for a very long time because they were showing her heartbeat to be very erratic. As it turned out the monitors weren’t ready properly, but it took several people and quite a while before the cause could be determined. While she looked normal and was enjoying her Cheetos, Phil and I both wondered whether we had reason to be concerned because her heartbeat kept dropping quickly.

Finally it was decided that she could have the exterior line to her port catheter removed. By this point Serenity was feeling very traumatized and worn out. She protested being held down and having the tape pulled away from her chest. We tried to be as gentle as possible but she screamed the whole time at the top of her lungs. Between her screaming, the strong smell of the orange oil solvent, and not having eaten for many hours, I started to feel light headed and thought I might throw up, so I left the clinic and went and sat down to clear my head.

Finally! it was time to go home. Serenity was much happier & so were her parents. We grabbed a quick bite to eat from the cafeteria and ate outside near the water fountains. It was the first peaceful moment we’d had all day. We weren’t too far from the hospital when I remembered we hadn’t picked up her prescription. We turned around and went back to the hospital for that. (The doctor prescribed her a pain medication in the hopes that even if her leg pain gets worse she will be able to tolerate standing soon.)

Phil was exhausted so I offered to drive home. Somehow I got turned around on the freeway and ended up retracing our steps for 5-10 minutes before I realized I was headed the wrong way. I woke him up and we switched places and drove home.

I had to pick up my children from my sister’s, and when we got home I ran my teenager to a job interview, then came home to a chaotic household so exhausted I could barely keep my eyes open. A friend brought pictures over for my children that her kids had drawn. They were a huge hit! Tonight Serenity fell asleep happier than she’s been in a few days (I think because her external tubing is gone) but I am dreading doing this whole thing all over again for the next several weeks.

Serenity is home, now we learn to live with Leukemia

 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, […]

 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!