A walk in Frankie’s shoes…

These last few months I have been a spectator in my sister’s diagnosis of acute myeloid leukemia. Again, like Frankie’s type 1 diabetes, it is seeing from the outside—someone you love with all you’ve got- battle a disease inside them. The fear at diagnosis, the stomach churning ‘watch’ you keep as your loved one fights a monster, and not knowing what it feels like –only what it looks like.  What it looks like—watching both my sister and my son— un-rivaled determination, courage, hope, and super hero strength.  I call Frankie my ‘Superman.’  I call my sister, Peg, ‘Batman’ and I have been given the chance to be Peg’s ‘Robin.’ I am her bone marrow donor.

Image

To be the donor, there is a pretty intense physical exam, lots of blood draws, and leading up to transplant day—injecting yourself with stem cell producing medication. This is nothing compared to what my sister is going through, or what my son goes through. This is just days for me-just days—that are giving me a glimpse into the daily life of my son.

I have to stick that needle in my stomach? Three times a day? The first set of injections were done at the cancer center—so a nurse did the deed. The rest of the injections I do myself at home. The first day-Frankie gave me his bear, the one he holds when we change his insulin pump, and he stayed next to me while I got the job done. My son was injecting himself in the stomach at 6 years old, and there I stood, at 46, shaking in my shoes, and channeling my inner Frankie.

These injections cause nausea, lightheadedness, extreme lethargy. Sound familiar? That is exactly how Frankie describes a high or low glucose level. I went to work day 2 of injections. God help the place where I work. The whole day—I felt like I couldn’t get my words out right, a simple task took me longer to finish—and heaven knows if I did it correctly or not. I was in the bathroom ten thousand times thinking I was going to be sick. I can’t be sure, but I am pretty certain I was also a grumpy jerk.  I came home-headed right to bed and slept like Rip Van Winkle. My son gets through school like this and still gets good grades? Gets along with his friends, plays basketball, lacrosse, and is a cub scout?

I have said that diabetes has given me the gift of feeling like Superman’s mother. I have watched my baby boy turn into a responsible young man. I see his super powers at work—as he bravely fights his foe- type 1 diabetes-everyday.  My Superman.

My sister, Batman, is fighting just as hard as Frankie, with a smile on her face and faith in her heart. She is going to beat this.

We will never know in this life why we are given challenges like cancer and diabetes, but I believe everything has a reason and there are gifts to be found in every hurdle to be faced.  I remain a spectator in my sister’s battle against cancer, I can only imagine and watch her courageous struggle- but her battle has given me the gift of a small…walk in Frankie’s shoes.

Advertisements

The Final Frontier…

My sister was diagnosed with leukemia this past Christmas. Sitting with her at the doctor’s office hearing him say “acute myeloid leukemia” was only months ago—but it feels like years. Hearing it- felt a lot like when I was told my son had type 1 diabetes four years ago. Shock, disbelief, fear, and then… let’s do this.

I’ve learned more about leukemia in these months than I ever thought possible, just like 4 years of learning diabetes, and recently I learned that I was a bone marrow match for my sister. Shock, disbelief, fear…and then let’s do this.

Image

My son’s numbers have shown his emotions. Up and down and all around. This is not just his Aunt—this is THE AUNT—the favorite, the one he spends so much time with, calls on the phone, and loves beyond measure. This is his Godmother who he is named after-Francis—because she is a Sister of St. Francis, Newman Community.  

My daughter, who keeps it close to the vest, but you can see everything in her big blue eyes—is scared. Her favorite Aunt -fighting a monster disease—just like her brother. Rachel sent her Aunt a card during the first round of chemo—some 56 odd days in the hospital—that said “you aren’t missing anything.” There were movies and outings planned with this Aunt—and Rachel waits—she won’t go to them until her Aunt can go…and THEY WILL GO!

Planning to be the donor—I am going through physicals, blood tests, xrays—a rundown. I think this is what astronauts go through to go into space. If I pass all these tests—yahoo—we get down to the nitty gritty of the transplant.  It feels just like getting the results of an A1C test—like pass or fail in my heart—when my head knows this is not a pass or fail test. I feel like—if I don’t pass the physical I will be letting my sister down—just like a bad A1C result—which makes me feel like I let my son down.Crazy thoughts—I know—but that is what is in my head. ( I better freaking pass this physical!)

Planning to be the donor—I am training friends and relatives on how to change Frankie’s insulin pump, what his eating/glucose check  schedule is, lining up someone to go to school if something happens, writing down doctor’s numbers, the Joslin on-call number, and  all the ins and outs of Frankie’s care.  I am writing down Rachel’s soccer schedule, clarinet recitals, Frankie’s cub scout meetings, trying to get down on paper what I always just keep in my head. I realize how blessed I am. I have my husband—who already knows all this—so I only need backup for the kids when Dad is at work. I have a boss and co-workers who just say “go—do what you have to do and we’ll see you when you get back.”  I have friends—stepping up to the plate to learn all and everything so I don’t have to worry about Rachel or Frankie’s care while I am in ‘Donorsville.’ I know –not everyone has this kind of support. I am thankful.

For me, this is THE SISTER-my best friend, my partner in crime, (she’s a nun—so her part was usually just bailing me out!) my confidant, the first call I make with good news or bad, and the person who has been with me through thick and thin. She is a rock—going through the first rounds of chemo like a champ and facing this disease with a smile on her face and determination.

I believe life is full of preparation- things happen to get you ready for the next. Diabetes got me ready for this. Every diabetes struggle in the last four years, when I thought –we can’t do this, make it through this—somewhere we found resilience. Diabetes at its worst—we’ve been there—and we are still standing. We can make it through this-diabetes taught us how.

The doctor’s say “it’s a process” and after this is over, a memory, I never want to hear those words again. Tomorrow is my last round of preliminary testing—pray with all you’ve got…and then God willing…

The Final Frontier.