Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, September 15, 2008

Ideas for sick parents

After just four days in kindergarten, X was diagnosed with Strep throat. Four days! I had only kept him home because he seemed a little sick and I wanted one last opportunity to do some super mothering. I wanted him to know that he would always be taken care of, and that seems to be done best by letting him be the sick child for the day, even if he is not. He gets to sleep in mom and dad’s bed. I pile on pillows and comforters. He gets to control the remote. He gets to drink all the fluids he wants. I bring him food in bed on a tray. When he doesn’t need anything, I lie beside him, snuggle and read. That is super mothering TLC. Except, he was really sick this day, and oddly enough, he enjoyed it. Our child is not the sickest in our family, I am, then my husband, and then him. Obviously, this causes severe anxiety. I can’t begin to think what his imagination has come up with, but I’m sure some of it is the scariest truth, that he could become an orphan. It’s become clear, my family has been diagnosed with cancer. My community has been diagnosed with cancer. But today, I want to tell you how my son has been affected by cancer, and how my husband and I have rolled with the punches to help him cope with our disease. It’s theorized up to 10% of what is learned is discovered in the womb. If this theory is correct, Xander is educated in health assessment, pharmacology, pathophysiology, and microbiology. If this theory is incorrect, he still has a broad medical education for a five year old. At three, when I was diagnosed, my husband and I decided not to bother him with details. We felt my disease would be in remission in six months. We were hoping Xander would never remember. Since things have not turned out the way we planned, and my cancer turned into a battle lasting years, we starting buying books on the subject. When none of the books fit my quality criteria, I wrote my own to open discussion. When he started to exhibit separation anxiety, I hired a child therapist. When the therapist did not live up to my standards, I fired her, and then another one, and another one. Oops. Instead we opted to surround ourselves with friends and family who are enjoyable and reliable. We are very blessed. I call these people my “framily” or my friends who are family. These are the people who grocery shop for us, who clean our house, who call to check in, who take Xander when we need a break or he needs a distraction. These people are reliable and stable, and that is what Xander needs that we can not provide. My husband and I have also gotten creative. We purchased a dry erase calendar and wrote down my appointments and when I could expect to be hospitalized. The scheduling was effective, until side effects started to send me to the hospital unexpectedly. Then we called in the recruits to distract him. We bought him toys at the hospital and allowed him to run around like a maniac on the children’s floor so he could associate the hospital with a feeling of safety and well being. We found the outdoor playground. My family will take him on fun outings, like to the children’s museum or Red Sox games, so he can associate Boston with happiness as well. We role played how mommy was feeling and how she would be taken care of with his dinosaurs and super heroes. We made up long elaborate plays with alternate endings. I explained my medical equipment. I allowed him to touch it under supervision. I also allowed Xander to help with my care when he was able. Tasks such as bringing me water or pretending to cook me meals or wiping down countertops with wipes helped him feel empowered in protecting me. He turned into a professional hand washer. We did eventual find some effective books, such as “I know I caused this,” which deals with the narcissistic magical thinking that of his age group. “Sir Chemo” and “I’m Having a Bone Marrow Transplant” are both great interactive resources that children can write in and color, like a young child diary. Xander has also significantly responded to pictures. We have used children’s anatomy books like “Funny Bones and other Body Parts.” We’ve shown him my PET scans and my CTs outlining the difference between what is normal and what is cancerous. At four, we decided to have him participate in my medical appointments under the theory that his imagination was probably scarier than the truth. He helped put stickers on my body when I was getting measured for radiation. He viewed the machine before my treatment, then he was never interested again, which was our ultimate goal. We’ve also found that just like adults, Xander needs friends he can rely on and talk to. This is difficult at this age, but we’ve found the children of our close friends have been a wonderful source of support. We’ve spoken to our friends about our situation. We have had an open dialogue and they in turn have had an open dialogue with their children. These children can then support our son to the best of our ability. My husband, who could not be in two places to provide support, opted to stay with Xander. He is the rock in the family. My parents also take a very active role. They have made their house a second home so moving Xander when I am in isolation has not been an issue. It’s a blessing if people have these options, I understand many do not. The best advice I can give is kids are resilient, just do the best you can. As far as school goes, I contacted the school nurse to notify me immediately is strep, foot and mouth, etc. are going around. I requested a note be sent home to parents reminding them that children should not be sent to school with a fever. The request was denied, but the class did do a review on germs. It’s the best that can be done. If anyone has other suggestions for coping with the affects of parental illness on a child, please comment, we would all like to know.


Meaghan said...

Over the weekend, and this morning, I have read your entire blog.. I cannot believe what you've been through, what your family has been through, what you have survived, and what you have conquered. You are an inspiration to everyone.. Hold your head high.. xoxoxoxoxo

Anonymous said...

Hi Hillary, I'm sitting here at 10:30 on a Monday night reading your blog and I am so amazed by your strength and courage in the face of such daunting circumstances. I applaud you on your parenting of Xander...from what I've read here, it is apparent that you are an amazing mother and he is lucky to have you. Dan and I will pray for you and your family and we'll also have our LIFE Group at our church add you guys to our prayer list. You'll have a bunch of people in Indiana thinking of you. Keep fighting, you're kicking ass.
Abby (Furman) Rowland