Wednesday, October 5, 2011

Monday October 3, 2011

I woke up today....feeling all the  familiar, normal feelings. I'm so tired today....I wish I would have been able to sleep last night. Not sleeping has also become too familiar. "maybe today will be a better day.", I tell myself. I get up, take my vitamins, look in the freezer and take out some brats to make for dinner. I tell myself, this might be an easy day at the hospital.....but draining nonetheless. I'll keep dinner simple. My 17 year old reminds me of a meeting she has after school. Can I pick up my 14 year old from school? "if I get out of the hospital on time.", I reply. "we'll have to play it by ear."
Those two are off to school.
Maybe I'll feel better if I try to get in a quick 30min work-out on the treadmill. I try, after I feed the dog.
Wow! How tiring!....I lean on the handles, just trying to get through it. I look at the clock. I have about 45min to shower and get ready for the hospital. I better hurry! My 21 year old comes downstairs....I can already read the pain in her face...and her body. I try to reassure her that maybe it will be a quick day of platelets at the hospital. She smiles and looks at me with such a grace....
Our first stop is froedtert for radiation....we lucked out...the machine was up and running today. After radiation, we head to Children's hospital for an exam and platelets. Of course when we get there, they have already given away her room. We are now stuck in a room with no sink, paper towels, or cell phone signal. The nurse tries to access megan's port...not one, but five times, to no avail. Maybe it has flipped in her chest wall, which would require surgery to fix it. I shall remind you, because of the tumors in megan's lungs, general anesthesia is not normally done. The nurses have to put in an IV in order to give platelets and now she needs a X-ray to look at her port. I now have to scramble in and out of the room to try to get a cell signal to let my other kids know that the hospital is going to take longer. Could they work out the meeting/ride situation on there own? While I'm working on all this...the Drs are concerned with some of megan's neurological symptoms.....yes they now fear the cancer may be in her brain stem. Better to move sooner rather than later. Drs will set up MRI for tomorrow morning at 8am. Then radiation again....what a sad day at the hospital. But we still couldnt leave until we picked up megans new prescriptions. Of course there is an insurance issue with payment. I pay for it with money i dont have and tell myself, I'll worry about it tomorrow. We don't get home until after 5pm. I'm happy to see my other children made it home ok. I immediately start dinner. While we're eating, I try to explain what is going on to my other two children....
I am so tired. I help Megan carry her laundry basket downstairs to do some laundry. The tumors in her lungs make it harder to breathe. Tumors in her spine make it hard to lift. Tumors in her head make it harder to balance. I find Megan asleep on the ottoman. I take her and put her in my bed to get some rest. I finish washing her laundry and carry her basket upstairs to her room. I hope I'm tired enough to sleep tonight. Megan wakes up and I help her upstairs to her room. Making 3 more trips up and down the stairs for medicine, water, cell phone and other forgotten items.
It's now exhausted as I am, I can't fall asleep. Probably a good thing because at 2am, Megan comes downstairs to seek my heroism to kill a "really gross big bug" in her room....ah...the little victories!
By 3am, I finally start to doze off....if I'm lucky, I'll get about 3hrs of sleep. Have to get up bright and early to start the hospital stuff all over again......
Just a day in the life of a single mom with a child that has terminal cancer...


  1. I love you Suzi.... Always know that, no matter what I am here for whatever,whenever!!

  2. This has touched me so much. I have such an NEED to do something. To help some way. I feel helpless and yet have a drive inside of me to help.
    When I am having a bad day and things seem so horrible I read something from you or Megan and I realize that everyday is a challenge for your family. That there does not seem to be a break in the day for you. I realize then that I am a big baby and I need to count my blessings and I need to do more. Do more for those that need more.
    I want to do what ever I can for you and your family. I have a few ideas, but I want you to know that in all this, I will continue to pray for you and for Megan and for your other children as well.
    You are an incredible mother and you have inspired me to no end. I am learning so much through your words and Megan's words. Please keep posting and know that in Missouri you have several, I mean several people lifting you and Megan and your family up in prayers.
    My heart is so very affected by your story and Megan's. Bless you and your family Suzi. Love, Lori