Sixteen months down and 10 to go.
Those numbers sum up the number of months Ellen, my 6-year-old daughter, has been in treatment for leukemia and how many she has left. In some ways those 16 months seem interminable and it's difficult for me to recall what life was like before she was diagnosed.
It's hard to imagine living a "normal" life that doesn't involve blood draws, monthly administration of a chemo by a nurse, spinal taps every three months and keeping track of Ellen's oral chemo schedule. Daily mercapatopurine doses, methotrexate (another oral chemo) on Mondays and dexamethazone for five days every 28 days has become so much a part of our lives we no longer need a schedule to keep track of it.
Besides becoming knowledgeable about administering many kinds of chemotherapy drugs, the lives of our family members have centered around trying to prevent Ellen from getting infections and taking her to the doctor to have her checked if she does.
Lately, we've been trying to outwit the H1N1 virus. As anyone who is taking care of someone with a suppressed immune system knows, viruses, such as influenza, are a big concern because they can hit especially hard. That's why it frustrates me when I hear people talking about the flu getting too much publicity. Perhaps the flu is no big deal to them, but it is to our family and to those of other people who have a member with a compromised immune system. The fact is it cannot only be serious, but potentially, fatal.
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Thwarting the flu
Because influenza is such a serious concern, when a few children in Ellen's school exhibited flu-like symptoms we kept her home for several days, on the advice of her doctor. We hoped that by doing so, we would reduce her exposure to the H1N1 virus. That plan failed when her brother, Thomas, got sick and tested positive for flu.
I again consulted with Ellen's doctor and she was given a prescription for Tamiflu. The doctor also advised us to stop giving her chemo medicine for a week so her blood counts could build up and she would be able to fight off a flu virus if she contracted it.
Ellen didn't contract influenza, so after a week, we started her back on her chemotherapy medications. It's important to resume her medication as soon as possible because it prevents the leukemia from returning.
As soon as the H1N1 vaccinations become available, we will make an appointment for Ellen and the rest of our family to get them. I know some people are concerned about the safety of the vaccine. I am not one of them. I would much rather have the vaccine, which health officials have assured is safe, than get the flu which could possibly be fatal for Ellen.
Weeks like these past few reinforce the need to take life a day at a time. I have to catch myself from "what iffing" about the outcome if Ellen catches the H1N1 flu. I avoid reading stories about children who have died from the flu because it's too frightening. I tell myself that Ellen is feeling good now and we will deal with whatever the next day brings.
Challenges
I am thankful that I work for a company and a boss that understand that what the next day brings could mean that I have to miss work. During the past 16 months I have missed more work than the previous 20 years combined. I try to work ahead so that when I do have to be gone, stories and columns are available to fill the space in the sections my department produces.
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But even though my boss and co-workers are understanding and there are no empty spaces in the newspaper, I still have difficulty shaking the feeling that I am derelict in my duties when I miss work. I also struggle with whether I should take time off that's not related to Ellen's illness or to one of my sons getting sick. I've been gone so much I feel guilty if I take additional time off to do something that's not heath-related.
I'm pretty sure that the struggles I have related to Ellen's illness are not exclusive to me and that other people caring for a sick child or other family member have similar challenges. If you know someone in that situation, I urge you to give them your continued support. Journeys with illnesses such as leukemia, are long ones and it's sometimes easy to forget that families that remain in the midst of them, and even though the children look healthy, they and their families are still dealing with cancer.
In some ways, I find that I am having a more difficult time dealing with Ellen's cancer now than I did at the beginning when she was more ill and spending time in the hospital. At that time, I was on auto-pilot and had no choice, but to do what needed to be done. Now that I've had time to catch my breath, I often feel exhausted, overwhelmed and as though I am unable to continue on this path.
That's when I take a deep breath, say a prayer for strength and put one foot in front of the other. Each step forward is one closer to the end of this part of our family's journey with Ellen. As her mom, no matter how I feel or what comes, I'll be with her all the way because, of course, her recovery is about her, not me. Ellen doesn't allow herself time for self-pity and neither will I.
