Category: Leukemia

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.

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.

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.

We’ve both got thrush. The story of my life. My eating isn’t helping the situation, obviously, and fixing wholesome, nutritious meals for my family has been weighing heavily on my mind since Serenity’s diagnosis, but I don’t know if I am up to the task.

Yesterday Serenity cried a lot. I couldn’t tell if she was in pain and she wasn’t able to articulate what was wrong or what she wanted. She was also more lethargic than normal, so by late afternoon I started to wonder if she might need a blood transfusion. (She’s had them pretty regularly since getting her diagnosis.)

We phoned the hospital and they told us to take her to the local Emergency Department for a blood draw and lab tests. Then we would make the decision whether to bring her to Primary’s. We spent almost 4 hours there before being discharged because her labs looked alright. Several times during our time there I had to speak up to correct someone or suggest an alternative to my daughter’s care. Since I am usually shy & reserved it was VERY HARD for me to do, and I was so proud of myself for pushing past the discomfort to be an advocate for her. I am sure that someone probably wished I would be quiet and not know exactly what I wanted but I did and I voiced it.

Anyway, her labs and chest X-Ray were good (with the exception of an ANC of 0 – meaning she has no immunity right now) and so we went home. But because they had accessed her port (inserted a needle & line into the port-a-cath in her chest) she was unhappy and screamed and cried for a lot of the time. And then she threw up when we got home.

This morning I woke up with a headache and horrible stomach cramps. Throughout the day I’ve felt dizzy off and on. I don’t think I’m sick; I think it’s a side effect of a medication that I’m taking but I feel awful enough that I spent a lot of the morning in bed. This afternoon Phil had an allergic reaction to something so he dosed up on Benadryl and fell asleep.

Serenity has not felt well today. She keeps saying words that we can’t understand and bursting into a huge tantrum when we don’t respond quickly. (The steroids she is taking make her prone to mood swings and intense rage.) All day long we have been up and down, back and forth fetching various things for her trying to get her to stop crying. It is so heartbreaking because it is obviously very frustrating for her. At each meal she asks for 5 or 6 different things to eat and then hardly touches any. She complains that her tummy hurts, and her legs, and she keeps scratching herself when she gets upset. Tonight we gave her some Oxycodone thinking maybe she is just in a lot of pain, but I don’t feel like it helped a whole lot.

Hopefully tomorrow she will feel better but I wonder if this is just how it is to have leukemia. Maybe she is just going to hurt and be angry a lot of the time.

Monday we have another visit at the clinic for more chemotherapy & blood draws. We have to go into the city early so I am dreading the long day already.  It would be nice if we lived closer to the hospital.