Category: Leukemia

Serenity has to wear a mask when we get to the hospital until we get to the Oncology Clinic. Her immune system isn’t functioning so we have to be very careful that she’s not exposed to anything. She screamed and cried the first few times but she’s become used to the mask.

While we wait for our turn Phil tries to engage Serenity in doing a craft.

Someone from Child Life brought in some toys for Serenity. Once she figured out no one was going to hurt her for a while, she relaxed and started playing.

It’s been a long day. Serenity is still in recovery from her lumbar puncture (spinal tap) and bone marrow aspirate.

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.

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.

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.

She was discharged this afternoon. 

It has been a very long day and I am bone weary.  The other kids come home tomorrow.  Serenity has another dose of chemo at the clinic on Monday.  We have a long road ahead of us.

But it is nice to be home.