Wednesdays are so difficult on me. Many things are always playing against me and my M.S. on Wednesdays. A really early start to the day after not sleeping because of my thoughts running threw my head about how Ellie will handle her Chemo. (Lack of sleep not a M.S. friend). Then the long draining day at the hospital (Not good for my M.S.). Then Ellie telling me she does not love me, she wants a new family and a new mommy. (Emotional Stress and Strain not good for my M.S.) And the cherry on top, re-injuring my back while caring Ellie because she was just too tired to walk. All adds up to an extremely tired and emotional me.
I spend hour’s daily dealing with Ellie’s cancer either through therapy, Chemo, her attitude, etc. all while trying to juggle Jake and his needs. I many times forget about my needs in the process. Unfortunately my body does not let me totally forget. I don’t think that anyone can truly understand what I go through on a day to day basis without stepping into my shoes for a day. Tonight I write how truly underappreciated I feel. Lots of people think it’s as easy as going to the hospital at the crack of dawn and sitting around all day waiting for Ellie to get her medicine. Well I got news for all of you Chemo therapy is a constant process throughout the day.
My Wednesdays, goes as follows. We begin the day around 5:00am. I start by getting myself ready to go, and then I begin to wake Ellie up. Sometimes Dave wakes up and helps me get Ellie dressed. Ellie is typically not in the mood to wake up so early. We then need to make sure she eats a good breakfast. While she is eating I work on packing everything she needs and wants for the day. Her beaded necklace, her chemo doll, her DVD’s, a computer, all the paper work applications etc that were given to me the last time I visited the hospital, etc. I always have to check the list twice because I cannot forget anything or Ellie takes it out on me the rest of the day. Even the clothes and shoes she wears for the day has to be planned out carefully. She has to have a special shirt on so she can have her port accessed and slip on shoes so that she can get up and go to the bathroom quickly. Then I begin my journey. I meet my mom at the Target around 6:15ish on the way and we head downtown for another full day. We usually arrive around 8am depending on traffic. When we arrive I check Ellie in. Then we make a bathroom trip. Usually a nurse comes out around 8:15am or so to greet us and put a numbing cream on her port. Then it is another 15min or so and we get called back for vitals (height, weight, temp, blood pressure). Which I must say this is the first time Ellie actually did really well taking her shoes off. She did not fight me. Then we go back to the lobby were we wait for the nurses to call us back to day hospital to access Ellie’s Port. While waiting I usually spend my time meeting with the guy that does the beads to make sure Ellie receives her rewards. We also speak with some volunteers, speak to the charge nurse about getting Ellie a bed, and meet some awesome kids in the lobby. I would say about 15 min or so later I am called back to Day hospital to access the port. Not a fun experience at all, this is usually were the screaming and fighting begins. Ellie yells at me and tells me that it hurts and she doesn’t like me and I’m so mean, on and on. Finally after about 15 min we get the port accessed. They draw blood and send it to the lab to get her counts. Then we usually go back to the lobby and wait another five min or so. They come in with her fluids pole and hook her up. She then has an hour of hydration. During this time we meet with the oncology nurse for Ellie’s evaluation of her strength, eyes, ears, etc. Then we discuss any new symptoms that have arouse in the past week. We sometimes during this time meet with her oncologist. Then back to waiting room to wait for Ellie’s blood counts (if they are too low they cannot administer Chemo). We got good news today Ellie’s counts finally came back up. We then walk back to day hospital and Ellie gets her vitals taken again. (They do a double check so that she does not get overdosed) By the time we arrive back in the day hospital Ellie’s hydration is almost completed. We meet with the day hospital nurse and get Ellie all settled. We usually wait a few minutes for the pharmacy to complete Ellies chemo order. Ellie then gets Zofran through the IV, while we wait for the Chemo. I then begin the process of ordering Ellie her lunch for the day. This is always a challenge to have her pick something out when she doesn’t want anything on the menu. We finally get the Chemo started. Usually at this time Ellie has to go to the bathroom. So we put the shoes back on, untangle the IV and take the pole with us to the bathroom. The bathrooms are down the hall and it’s usually an emergency. We get her back in bed and settled for the day. Then we usually get visits from Willow the art therapist, the social worker, the doctor a few times, a couple of nurses, the guy in charge of resources, volunteers, child life specialist, etc. Lunch is usually served in between there sometime. Somewhere in her my mom or I run downstairs to get lunch for ourselves. Then her Chemo is complete after a few hours and she begins another hour of hydration before she can be released. In which we go through a serious of questions with the nurse. She asks me the usual is she allergic to anything; we set up the next appointment time, etc. Then it is time to take the port access needle out. And this becomes another challenge. Ellie likes this just as much as accessing the port. Today she saw a drop of blood and being her dramatic self the rest of the day was all about her blood hurting her. It’s cute but it is very mentally draining. Then we begin our journey back to target to drop my mom off at her car. This usually takes about an hour or so depending once again on traffic. From Target I usually head home to get Jake off the bus. Today right when I arrived home I received a phone call as I was walking in the door to schedule Ellie’s MRI in June. That was a task getting Ellie in the house, all the stuff in the house, while trying to schedule an appointment. Fun to say the least. I got home and had to lay down my back hurt so bad. So from there we usually rest for a while, well as much as Jake lets us. Wednesdays are everyone’s hump days; well Wednesdays are more like a mountain day for us.
We also found out today that Ellie is allergic to her medication that keeps her from getting Pneumonia. So we have to take her off that medication she gets three days a week at home and now she has to get an hour IV of another medication once a month. Just another hour of fun at the hospital for us.
Tonight was a really hard night on me. I feel like Dave has no clue what I go through on a daily basis. (I still think a great reality show would be a wife and husband switching jobs and responsibilities for a week) Don’t get me wrong he is a fantastic Dad and a great husband but sometimes I just feel a little underappreciated as I’m sure he does also I know he works very hard also, that’s why I think us trading our responsibilities for week would help us appreciate one another more. I’m just so tired, so tired of these struggles that god has put in front of me. God really is pushing me to my limits these days. We are only on week 7 of a whole year. And I am worn.
Although today was a rough day I do not want to forget the positives of the day. Ellie’s blood counts are up and that means she is not susceptible to an infection. Yeah for that. We also were asked to participate in a family extended weekend Camp for families that have a child with a cancerous brain tumor. I’m very excited about this. It should be nice to get together with other parents that are going through the same thing while our kids get to participate in fun activities with their nurses and staff from Children’s. I guess this year it will be at a camp ground in Lake Geneva. I think it should be good for us as a family to be with other families going through the same hardship we are going through. I really am trying hard to think of another positive but my body and brain are just too tired right now. For now I must get to bed for I am drained to my max.
God bless our family as we go through the hardest year of our life.
Oh yeah one last thing that was cute that made me smile today. When Jake got home from school he went into Ellie’s room and said “I love you Ellie, you are the best big sister I have ever had. I’m going to give you a hug now” He has been the most wonderful little boy lately. He has shown so much love towards all of us. I think he knows we are in pain but does not understand why. So his way of helping is showering us with lots of hugs, kisses, and I love you’s. No matter how bad your day is he can always make you smile.
A mother with a battle ahead of her.