"We have a LOT of hope...."   |   Tuesday, September 18, 2012

Imagine being 21 years old, feeling sick... for a long time.... night sweats, strange rashes, tired all the time, short of breath.... and being treated for two years for 'chest pain.' How frustrating would that be? Not feeling like you can have a life, cause you feel so crappy?


THEN, being told you have Stage 3, Hodgkins Lymphoma.... We're sorry, "You have cancer."

Mom says, "We were terrified. She'd been treated for two years for various ailments, never even looking for cancer." Now they were facing Stage 3 cancer, with almost her entire torso filled with tumors.

Starting chemo this past spring, Hannah underwent treatments every two weeks...enduring many reactions to the various chemo and anti-nausea drugs, her mother watching helplessly at her side. "It's hard to watch her go through this, but she's got such a positive attitude... she even makes fun of it."

Her self-deprecating humor was evident during her portrait session. Her inner beauty exceeds her outward beauty. "It's not part of my nature to get down and stay down. But when I lost my hair, it was scary.... then it became 'real', then I LOOKED sick and like I had cancer." Her family rallied to her side with her brother and brother-in-law both shaving their heads to match Hannah's!

"We have hope that this is a temporary thing- I have no fear that I won't make it through this. We have a LOT of hope."

Her words to others going through the same trials.... "lean on your faith and take one hour at a time, then one day at a time.... set short milestones for yourself." I suspect that it's more of that gorgeous smile, her positive and humorous attitude and inner strength that gets this young woman through each day....

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  |   Tuesday, August 7, 2012

After a persistent cough for a couple weeks, Clara's Mom, Lisa decided she knew her child best and took her in to the Doctor to demand some labs be drawn... which determined, just 4 hours later that Clara was fighting Acute Lymphocytic Leukemia. "It was the farthest thing from our minds when we asked for that blood test, they never even eluded to something like that", says Mom, Lisa. With aggressive treatment started immediately in June 2010, Clara's hair remained intact till about Thanksgiving that year. Mom reports that Clara has been a trooper and that this fall, her "port" is due out and finally, life will get back to 'normal' for them.


"Our Doctor, Dr. Scott is very reassuring, but always warns us to 'take one day at a time." Family has rallied around the family, even Clara's uncle Jeff who created a 'port' for her toy kangaroo, which she carries with her to every treatment and hospital stay.


Looking like a normal little 5 year old, she loved playing in the camera room, dressing up in all the costumes available, playing princess, as every little girl should feel!



Mom relates, "Don't ever take anything for granted and enjoy life!" I think that's a 'given' with kids.... they never quite understand the gravity of the situation and help parents cope with their childlike naiveté. Clara has never let the expression of joy leave her sweet little face! She even directed this 'special' hairdo!

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  |   Monday, July 23, 2012


Charlie is a bright, friendly and utterly charming little 4 year old with a "monster" that lives in his little head.... a terminal brain tumor...Diagnosed with “diffuse intrinsic pontine glioma” or "DIPG”, Charlie was initially treated with radiation and steroids, but to no avail. This is a tumor that WILL take his life and sooner, rather than later.


"Right now, Charlie is in the ironically named "honeymoon period" of his disease. Like any normal 4-year old, he is bright, cheerful and full of life and love. All that is noticeable is a motor impairment in his speech ability, even though he talks non-stop and his cognition is above average. Already he has beaten the odds of a predicted nine month survival after his radiation and steroid treatment last year, but the tumor still lurks, unreachable, inoperable and fated to grow again at some unknown date.
Treatment possibilities have been explored, some tried. The focus now is on providing the best and happiest quality of life in the time remaining.
The disease is cruel, not merely terminal, but one where the sufferer often retains full cognitive awareness when motor functions fail in the final period."


In grappling with the horror, John and Abigail are determined that more help should be available for other families who face such a situation in the future. As a partial, but needed, distraction from the painful reality of the present they have put their efforts into fulfilling the cause of forming a foundation dedicated to families going through this horrible nightmare. Read more HERE about their foundation and the quest to conquer this disease and help families cope with this devastating diagnosis.
I ask myself daily.... why do people have to go through this? Why does this happen? What can I do to help?
What do you ask? How are you affected? Think about being handed something like this... what would you do?
If you dare, please take some time to read Charlie's Mom's journal and the letters she's writing to Charlie as they move through this nightmare of impending death. They are touching, heartbreaking and moving... click HERE to visit Abigail's Journal.

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Sometimes you just look normal....   |   Wednesday, June 13, 2012

Everyone loves to see kids at play, laughing, running and jumping....but sometimes that just can't happen. Especially those with blood disorders... 6 year old Layla wants to be a phlebotomist someday, when she grows up, "to make peoples blood better."


After noticing some unusual bruising, parents, Jason and Jennifer took their daughter to the doctor to investigate. With several trips to Detroit Children's Hospital, CS Mott and Mayo Clinic, in 2011, she was diagnosed with Aplastic Anemia, which  is a rare disorder caused by profound, almost complete bone marrow failure. With no known immediate cause, she was immediately hospitalized to receive platelets, as she was at a very high risk for hemmorhage. Being poked and prodded with needles for constant blood draws, Layla told her Mom, "I promise I'm OK Mom, I just want to go home!" 




A year later, she appears to be a fairly normal child, still is being monitored for abnormal blood counts, still struggling with low platelet counts. I'm sure she'd love to run and play and ride a bike, but with hemorrhage a consequence, she doens't get to do too much of that....




What physical activity in your life do you take for granted? I'm sure Layla would change places with you.

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