Disappointed

I’ve been feeling frustrated about things I cannot control. Sweet Brinley had a lemonade stand several weeks ago that raised over $6,000 for childhood cancer research. This was so amazing and touching to me. The next morning I woke up and saw all over the news that our current governor had received $700,000 in campaign contributions that same day. I know the two are totally unrelated, but it bothered me A LOT that there is such a huge discrepancy between where we as a society spend our money and where we SHOULD be spending it.

Yesterday I went to sign up for the National Bone Marrow Registry. A local boy I do not know had decided to host this for his Eagle Scout project, and someone had left a flyer on my door. The test was simple: 4 cotton swabs were used inside my cheek to collect cells. The family of this boy was willing to cover the cost of the test ($100). When I arrived at the location I was the only donor in the building. I wanted to run outside and yell at the world, “WHY isn’t everyone in here donating?”

I understand it is a commitment that maybe not everyone is willing to make. By signing up, I was agreeing to donate circulating blood cells or bone marrow for anyone who is a match, until I turn 61. But these donations save lives! They save the lives of people who will DIE without a match. They save the lives of little innocent children with leukemia. (Serenity did not need a bone marrow transplant, but many children do. If she were to relapse someday she very well might.) The donation is USUALLY done via blood nowadays, not even bone marrow. I was just shocked and saddened that this event did not get a better response. Maybe people really don’t care.

Counting down the days

The last few weeks have been rough for Serenity. She has been fighting off viruses left and right. First she had an eye infection, with goopy eyes that were sealed shut every morning. For that we had to hold her down and administer eye drops (ciprofloxacin). She hated it because the medicine feels like it’s burning her eyes. She has also had this persistent, barking cough for weeks now. In addition to the septra, mercaptopurine, and methotrexate that she takes regularly, her pediatrician put her on a nasal spray medication (fluticasone) and an oral antibiotic (Amoxicillin) to help with the cough. When there was little improvement, the doctor put her on first an inhaler and then a nebulizer (Albuterol). A week later, the doctor sent her for a chest x-ray because she wasn’t improving. The chest x-ray showed some viral inflammation but no pneumonia, which we were thankful for. Our doctor also prescribed prednisolone. (Yea! bonus steroid week!) Just kidding. Steroid week is one we all dread around here. It makes Serenity feel awful and she turns into quite the little monster some days. Then she cries and says, “I hate it when I’m mean to people.”

Several siblings have had the same cough but they are mostly over it.

Serenity seemed to improve for a few days, but now it’s back. We’ve made a third trip to the pediatrician and she has an ear infection now, too, which boggles my mind given the multiple antibiotics she’s been on this month. She is now on a different antibiotic, and has a second nebulizer medication (Budesonide). It breaks my heart to see her propped up in bed with the mask – which she dislikes – over her face, trying to breathe in as much of the medicine as she possibly can. She is tired of being sick, and I wish more than anything that I could do something to help her. The other day she spiked a fever of 102.6 which made us nervous, but Tylenol brought it down and she’s been ok since.

We had a clinic visit about 10 days ago and I mentioned her cough to the nurse practitioner. He thinks she will feel better soon when she is off treatment and not on so many medications. I hope so! She’s had leg pain that comes and goes for months now, and I thought again about pressing for a bone scan to rule out AVN. Since she has only a few weeks left of treatment I decided to hold off and see what happens when she goes off the steroids and chemo.

Next month! I can hardly believe it. In the beginning I couldn’t imagine life this far down the road. Serenity goes back to the clinic next month for her final lumbar puncture and her final dose of intravenous and intrathecal (in her spine) chemotherapy. Then 5 days of steroids and then we finish out the month of July with her daily oral & weekly chemo and she’s done!

I have to say, I am beyond excited for her and also pretty nervous. With ALL, the ideal is for the doctors to achieve remission within a period of days. So when people ask if Serenity is in remission, they’re shocked to hear that she was in remission by day 14. Research has shown that if treatment isn’t maintained for several years, the child is more likely to relapse. We were told that she would be on treatment for approximately 2 1/2 years. (It’s 3 1/2 years for boys.) It is actually calculated to be 2 years from the time she started Interim Maintenance (one of the phases of treatment). So the end of July will be 2 years for us.

I asked the nurse practitioner about Off Treatment follow up. They would still like us to bring her in monthly for a CBC and exam, but it will be in another part of the clinic and “quick in and out”, he said. He asked if I wanted her port to come out at her appointment next month, or wait an extra month “just to see”. I told him I’d like to leave it in for another year! Her port has been such a blessing. Blood draws are quick and painless. He said they won’t leave it in for a year, one month it is. A CBC can be done with just a drop of blood so they will just do a finger poke. I still have reservations getting her port out, because if they needed a line for anything in the future she would have to have an IV, like anyone else. I do understand why they want to remove her port-a-cath. With a central line, there is increased risk for infection, and when she gets a fever, we run her to the hospital for IV antibiotics. With the port gone, we won’t need to do that anymore.

In my heart I believe we have kicked this thing and I am excited for my little girl to get her healthy body back and be a normal kid. At the same time, the idea of *not* giving her chemo every day to keep the beast at bay terrifies me. For the past 2 years she has had chemo nearly every day and multiple doctors have hovered over her, with us chronicling and reporting every symptom, no matter how mild. Now we’re going back into the world of Everybody Else where a fever is just a fever and a cough is just a cough. Except we’re not Everybody Else and maybe never will be. I walk around with an anvil labeled Cancer hanging over my head, wondering when it will drop. Sometimes I forget it’s there, but not often. Maybe in time that will change.

April clinic visit

Phil took Serenity to her clinic visit this month. Here she is sitting in the room waiting for the nurse to come draw her blood for labs.

In the Rapid Treatment Unit awaiting her lumbar puncture procedure.

Waking up from her procedure. She is very sleepy and HUNGRY after fasting all morning.

Back in the clinic for her intravenous chemo. These quarterly visits are especially hard on her because she gets chemo in her spine and also IV. We are lucky that her side effects are minimal. After this visit she was running around and even jumped on the neighbors tramp! She’s supposed to spend extra time lying down – I think to keep the chemo in her spinal fluid longer – so we were a little aghast to realize she had been on the tramp.

The Littlest Soldiers

The medals on our chests
Are port-a-caths for meds
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No Marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our LIFE is our reward.

by Cheryl Putnam
mom to a leukemia survivor, Robby Putnam, Acute Lymphocytic Leukemia 1/93, 1/95, 7/95 and Bone Marrow Transport 1/96, now age 22.5