May. 31, 2007 - Treatment Begins

Nothing quite prepares you for spending time in a pediatric hematology and oncology clinic.  While the physical difficulties of this day have long since faded, I won't soon forget the emotional impact this place had on me.  I would spend a day each week for nearly 15 weeks; trying not to watch the hollow faces.

October 1, 2001
Letter #4: Treatments Begin

Dear Family & Friends,

Here is a brief diary of my first week of IVIG treatment - Tuesday, September 18, 2001.

     9:45am - Russ and I arrive at the Pediatric Hematology and Oncology clinic at MUSC. We are greeted by a nurse who helps us get comfortable in the treatment room. The room has 6 recliners, each having a large tray attached that can be folded up for eating or other activities. At each recliner station, there is a small color television attached to the wall with a long arm that allows you to position the television where it will be most comfortable to view. the decorations are bright and cheerful and the bookcase if filled with children's books. This room is labeled "chemo room."
    
     10:45am - Russ decides to go get lunch while we are waiting for the pharmacy to send up the immunoglobulin. We have been watching CNN for the last hour.  It's hard to see all the pictures of the destruction from September 11th. We don't get any television stations at our house so we hadn't seen any visual images since the day of the attacks when we spent an hour at our neighbor's house watching their television.  The images I imagined in my head while listening to the radio were nowhere close to the horrible pictures I am seeing this morning. While Russ is gone, the clinic gets busier and I wonder about each child who walks in - about why they are there and how serious their problems are.  I look at the parents.  Most of them smile but their eyes show a battle to stay strong through a long, difficult ordeal. One lady is reminded by the nurse that she should pack her four-year-old daughter's suitcase before they come to the clinic in case her daughter was admitted.  What's wrong with this child  that every time she comes in there, there is a chance she will be admitted? The little girl plays while they wait for the doctor. I thank God it is not Victoria that needs this clinic.

     11:15am - The nurse tells me that the immunoglobulin is on its way up.  She gives me four pills - two Benadryl and two Tylenol - and we go into another room so she can put my IV needle into my arm.  Moments later, Russ returns with lunch.  We eat and watch CNN while we wait.

     12:00pm - The immunoglobulin arrives and the nurse hooks the drip tube into my IV. Russ leaves to roam around Charleston and I continue to watch CNN and the people around me. A father is there with his son, who looks to be about 13.  A doctor comes in and tells him that he needs to be giving his son "the shot" twice a day. Down the hall, a mother leaves the room where her infant is screaming loudly while having its blood drawn. Then the four-year-old leaves with the nurse. I hear her screaming and crying and she returns with an IV needle in her hand, tears streaming down her cheek. The nurse tells her mom the girl is being admitted to the hospital. The little girl wants to play some more but her mother asks if she can hold her. "Why?" says the little girl. "Because I love you and I need to hold you," is the reply. She climbs into her mother's lap and her mother thanks her for being understanding. The scene here is harder for me to see than the images on the news.

     1:30pm - The nurse comes to check on me and wonders why I am not asleep yet. I feel drugged but not like I want to sleep. My arm aches and I can't seem to find a comfortable position to hold it in. The nurse brings me a pillow for my arm and one for my head. A few minutes later, I turn off the television and try to sleep.

     3:35pm - Russ returns and wakes me up.  I feel hung-over and extremely thirsty. I finish the Sprite he was drinking as he shows me the issues of Time and Newsweek he picked up from the bookstore. They are devoted to the attacks of September 11th and are filled with eerie still pictures of ash-covered people, rubble that speaks of a war-zone, and bodies falling from the windows of the twin towers. The nurse comes in and tells me I will be done at 4:00pm.

     4:00pm - On the dot, the IV machine beeps and I wheel it into the IV room to have the needle removed. I notice the nurse is rubbing something oily under the tape as she pulls. She tells me it is adhesive remover. I'm surprised and I tell her that's the first time I've had an IV taken out that I wasn't told to just hold my breath while the tape was yanked off.  She laughs and says, "This is the pediatric facility, we take care of our patients."  She then pulls the needle out painlessly and applies a Garfield band-aid.

     4:15pm - We are leaving the parking deck, heading home. I feel strange but can't place the feeling. Am I tired? Is this just more reaction to the Benadryl? I don't remember sleeping any on the way home but I feel like the drive went very fast.

     5:45pm - We pick up Victoria from the neighbors. She doesn't seem to have missed us much!  Russ carries her because I feel too tired. When we get to our house, Russ fixes tuna fish sandwiches for dinner and I lay on the couch.

     7:30pm - I have been laying on the couch for the past couple of hours and can't seem to get up.  Victoria asks to go to bed, no doubt tired from all the playing she did at the neighbor's house. We tuck her in and I lay back on the couch.  I fall asleep there.

     8:30pm - I am awakened by Russ moving about the kitchen. I am extremely thirsty and ask him to bring me some water. By the time he sets the water down, I am asleep again.


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That Wednesday morning, I woke up at 8:00am feeling refreshed and strong again. I got Victoria up and we went about our day as usual. Then around noon, I developed a pretty debilitating headache.  Tylenol didn't help it and for days I had trouble functioning during the day and sleeping at night. It was Sunday morning before the headache disappeared.

Russ and I decided that I would try to drive myself back from my next treatment to see if I could make it. He would come along and take over only if necessary.  If I could make it easily and safely, then we wouldn't have to find someone to drive me each week.  That plan, however, was shot down when we arrived for our second round of treatments on September 25th.

I told the nurse about how bad the headache had been and how long it lasted.  She told me that she thought I could take Benadryl but she would check with the doctor. Dr. Abud was concerned about the duration and intensity of my headaches and ordered that I be given another dose of Benadryl and Tylenol before leaving the hospital each week.  So, there went the idea of driving myself home. In addition, I can take only Benadryl and Tylenol during the week for the headaches. This leaves my options at either suffering through the headaches or being drugged all the time. Consindering the intensity of the headache, either option leaves me without full capability of handling my daughter and other family responsibilities. In the end I decided to just live with the headache. One of the main reasons is that Benadryl is a Class C drug for pregnancy - meaning it could cause birth defects but studies have been inconclusive. We figure that two doses of this drug per week is quite enough.

With my second treatment also came an unexpected side effect. The treatment both times has caused my arm to ache intensely and to be sore to the touch for a couple of days afterward. They switch arms with each treatment to minimize the discomfort and the arm they used this last time had a particularly strange reaction. Wednesday morning I noticed all the veins in that arm had purple streaks on the skin above them. These streaks were tender like bruises. The one that corresponded with the vein they had the IV in was particularly painful. Today, almost a week later, it is still painful to stretch that arm out straight.  Tomorrow when we go for the treatment, I will ask about this.  Hopefully, it is something that can be easily prevented.

So far, there have been no signs that my body is rejecting the immunoglobulin treatment. Now my prayer is that I am not too far debilitated by these weekly trips to take care of my family. My next update will follow the doctor's appointment I have scheduled for October 9th.

Until then,
Take Care and God Bless.

...up next - The Routine Continues