Archive for the 'Lily's Leukemia Journey' Category

Dear President Elect Obama - find a cure for childhood cancer

Monday, January 12th, 2009

Okay, I NEVER send or forward those “send to ten friends” type emails, and this post is NOT one of them. This is a personal request.

Since my 7-year old granddaughter, Lily, was diagnosed with Pre-B ALL (Acute Lymphocytic Leukemia) on December 1, 2008, our family has been reading a lot about childhood cancer and the research into finding cures. There’s not much funding for childhood cancer research.

Each school day, 46 children (two classrooms full!) are diagnosed with some form of cancer. In the past three days TWO children whose cancer journeys I’ve been following have died. A two year old named Kayla, and a 5-year old named Addison. Addison had the same kind of leukemia as Lily - had a positive prognosis, but then caught a bug and she couldn’t overcome it. Addison is the one that when Lily was first diagnosed, the doctor told my daughter they needed to get to know her because she was doing so well and would provide such encouragement for them. And then just a few weeks later, she is gone.

Finding a cure for childhood cancer is a life-or-death issue. Just take a brief trip to a children’s oncology hall at a hospital, and your own life will never be the same. These children can’t advocate for themselves because they’re literally fighting for their lives. It is up to us to be their advocates. So you can start by doing the following:

(1) Go to this web address: Citizen’s Briefing Book
(2) In the search box, type “childhood cancer”
(3) Click on the top item “Increased Funding for Childhood Cancer” (The one that was posted at 4:02 P.M.)
(4) Click on the “Vote UP” button. If you don’t already have an account, you will have to create an account. However, it’s free, and it’s quick - and the effort is worth it.
(5) You can read the letter along with the comments. You can log in or create an account if you would like to leave your own comment.


The purpose of the “Citizen’s Briefing Book” in the link above is to bring attention to President Elect Obama so that he will hopefully make childhood cancer research a priority. Each small effort helps. Take a few minutes out of your busy day to make a difference for these wonderful children whose futures are in jeopardy.

Lily’s story was on on Monday. Here’s the link: Learning About Leukemia

Here is Lily’s website. Come visit, read her story, make a donation and offer some support: Lily’s Garden

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Post-nothing really bad has ever happened to me

Monday, January 12th, 2009

It was just a few weeks ago - probably mid to late November that I was driving along and thinking about my family and about how nothing really bad had ever happened to me or my immediate family. My father died in 1986. It was definitely bad and I miss him every day of my life. However, he’d had a couple heart attacks before his death, and had had bypass heart surgery. So, although his death was sudden, at age 67 and after his heart history, it wasn’t completely unexpected. And it was 22 years ago. Since then I’ve had 22 years of pretty smooth sailing in terms of really bad things. Yes, there have been a couple other hard and heart-breaking times during those 22 years. However, nothing life-threatening.

The thought I had that day as I drove along is that my luck in life was bound to change - and that every day I lived I came closer to the time of that change. Yes, I was being morbid - but I frequently am. So that’s nothing new. Also, Lily had been experiencing pains in her back and in her legs. Her description of the pain reminded me of a friend of mine years ago whose son was later diagnosed with non-Hodgkins Lymphoma. His primary symptoms were excruciating pain in his legs. So, yes, the thought of cancer crossed my mind more than once before Lily’s diagnosis. Her paleness, the bruises, the pains. However, as is our nature, we push those thoughts away. It couldn’t be cancer. I was just being paranoid. She just had the flu or a nasty lingering infection. After all, she’d been to the pediatrician several times, and nothing serious had been found.

So, I wondered those few weeks ago, what would be the first really bad thing to happen to our family. The thought must have made an impression on me at the time because I know exactly where I was when I thought about it - the road and the exact location on that road. I thought at the time that it would probably be the death of either myself or one of my siblings. Several of us have had some minor health problems - not life-threatening, but not a walk in the park either. We’re all in our fifties or sixties - most of us are overweight and don’t exercise enough. The law of averages is not on our side.

Then December 1, 2008 arrived, and Lily was diagnosed with acute lymphocytic leukemia, and the first really bad thing to happen to me in 22 years arrived. I look at the main photo of Lily on her CaringBridge site, and I remember that I took that picture. It was in the fall - mid October, I believe, and we had gone to Pinkerton Park in Franklin for a picnic - PaPa, Lily, Sophie and me. I had taken my camera and I took lots of pictures that day. I wonder now if the leukemia was already in her at that time. It very well could have been - or perhaps that was one of her last pre-leukemia days. Her serious symptoms started about a month later, and she was diagnosed about 6 weeks after that photo was taken. What caused her cells to suddenly stop maturing properly. What was the catalyst that caused the leukemia to begin? Those answers we’ll never know.

There are defining dates in each person’s life. There are many happy dates, of course, but there are also those dates when something life-changingly bad happend. For me there are two dates that will be forever etched in my mind: December 3, 1986 when my father died, and December 1, 2008 when Lily was diagnosed with ALL.

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Chemotherapy and clinical trials and risk levels

Wednesday, January 7th, 2009

We have good news to report on the Lily front, although the good news doesn’t change anything, really. When Lily’s bone marrow was sent to the national clinical study, they found a chromosomal marker that puts her in the “low risk” category. Previously she was in the “standard risk” category which mean that for the clinical trial, she would have been placed in the standard treatment arm of the study OR the more intensive treatment arm. However, now that she is “low risk”, she won’t even have the possibility of the intensive treatment. She may be placed in an arm that has one additional chemo - but it’s nothing like the intensive part of the other arm. So, she still has two and a half years of chemo ahead of her, and it will be very rough. However, we don’t have the anticipation of that awful intensive chemo.

And that is good since she is so sensitive to the chemo and has all the bad side effects for them all. She’s already lost her hair - and only 5-10 per cent of patients lose their hair in the first phase of treatment, induction, which is what she just completed. She has awful stomach and jaw pains, along with muscle weakness - other side effects that most patients don’t have at this point in the treatment.

My prayer is for her strength to get through all the chemotherapy, and then for there not to be “late effects” from the chemotherapy. There are possible long-term physical, mental, developmental and emotional effects from the chemotherapy.

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Bald is beautiful

Monday, January 5th, 2009

On January 1st, I wrote that while Lily was losing her hair quickly, it wasn’t immediately noticeable to anyone unless they looked closely. That is no longer true. In just two days she went from having very very thin hair to having big bald patches. Without a hat or a wig, anyone just glancing at her on January 3rd would know that she is quickly balding. I haven’t seen her in two days, and I’m sure it is even more evident now.


She has two new wigs that she REALLY wanted, but she seems to prefer wearing a hat. I think the wigs were more for emotional security. She knows they are there if she needs them. Hats are more comfortable. I’ll be happy for her when she reaches the point of being proud of her bald head - and if anyone has a problem with it, then it’s THEIR problem and not hers.

Cancer is WRONG, and especially childhood cancer.

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A resolve for the new year

Thursday, January 1st, 2009

Here it is, almost 9:30 P.M. on January 1, 2009, and I have not even THOUGHT of New Year’s Resolutions until about ten minutes ago when I saw an online story about them. Wow! Talk about how life changes! Every other year of my life - at least since I was old enough to know the difference between January 1st and July 1st - I’ve had at least one list of New Year’s Resolutions written out by this time on January 1st.

So what are my resolutions? There’s really only one: To get through this first year of little Lily’s chemotherapy for leukemia with our family and relationships intact and to provide her with as much support and love as I possibly can. At the end of 2009, we will not even be half way through this journey.

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On being bald

Thursday, January 1st, 2009

Lily is losing a lot of her hair. Right now she still has enough hair that it isn’t immediately noticeable. Larisa says that each morning, there are handfuls of hair on Lily’s pillow. Sitting beside her on the sofa yesterday, I saw lots of hair left where she had rested her head. Next week she will either start arm 1 or arm 3 of the clinical trial. If she is placed in arm 1, she will lose the rest of her hair in a month or two. If she is placed in arm 3, she will lose the rest of it immediately.

I told her the other day that if it would make her feel bretter, I woud shave my head and be bald with her. She looked at me like I was crazy - as though to say, “Why on earth would you shave your head and be bald if you don’t have to?”

Later I started thinking. Would I really have the nerve to voluntarily go bald - and not cover it with a wig? It’s an interesting thing to think about. It’s quite easy to SAY you’d shave your head. It’s quite another thing to actually DO it, and then conduct your everyday life with absolutely no hair - working, teaching, shopping.

Of course I know beyond a shadow of a doubt if I believed that it would make Lily feel even a tiny bit better for me to shave my head, I would do it in a heartbeat. I don’t believe it matters to her, though. Maybe I’m wrong. The topic sure has me thinking, though.

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Four Weeks of CaringBridge

Saturday, December 27th, 2008

Unbelievably, it has been just under four weeks since my 7-year old granddaughter, Lily, was diagnosed with acute lymphocytic leukemia. In some ways, it seems like a lifetime ago. In other ways, it seems like only yesterday. I keep wanting to wake up and find that this has been a really bad dream. When I visit and see her so subdued, I long to see the outgoing and happy child of a few weeks ago. The pain and the chemo have worn her down. Each week she starts feeling better on Saturday, only to be hit with the strong chemo again on Wednesday. And this intensive chemo will continue for the next six months.

I’ve spent many hours during the past four weeks looking at CaringBridge websites. During Lily’s two and a half weeks in the hospital, we met other families with children battling cancer. They shared their child’s CaringBridge website with us, and we shared Lily’s with them. Then, as I read their sites, I’d read comments in their “guestbooks” from other parents of children with cancer, along with their own links. I found that each new link would lead to several others. It has been an eye-opening and, at times, an overwhelming experience. I became like an addict, staying up till the wee hours of the nights, reading all the stories and shedding tears for all the children fighting such life and death battles at such young ages.

I found the website of a child that I taught ten years ago when she was in second grade. I didn’t know that five years after I taught her, she was diagnosed with the same thing Lily has - acute lymphocytic leukemia. She went through two and a half years of chemotherapy and is now involved in a program she started herself providing meals for families staying at the hospital with their sick children. She saw the need when she was in the hospital, and she started working on it immediately - getting donations of money and setting up the program with the hospital food service. The program has now expanded to its third hospital. When Lily was in the hospital, I saw the brochure for the meals - saw the name of the program - “Katie’s Helping Hand” - but I had no idea that I had taught that particular Katie. When I came across her website and saw her full name, I remembered her well. I emailed her - and she subsequently left a really sweet and helpful comment on Lily’s website. For one year out of her two and a half years of treatment, she had to use a wheelchair. Today, though, she has recovered and is living a full and active life.

I also came across the website of a little girl - only two years old who was sent home from St. Jude’s hospital in Memphis just last week. They had reached the end of the road - all the treatments had failed, and there was nothing more that medical science could do for her. So her family had to travel home from St. Jude to California with their precious little girl and arrange for hospice care. Unfortunately, there are many other children whose stories are similar to hers.

I have gone to the CaringBridge websites of probably a hundred children over the past few weeks. I’ve read their stories, I’ve read their journals. I’ve looked at their photographs and read the comments in the guestbooks. It is sad and uplifting and frightening all at once.

Cancer is wrong. No child should ever have to go through the horror of chemotherapy and all the procedures necessary to treat cancer. No parents should have to stand by helpless while their child goes through the pain and other side effects of chemotherapy. No child should have to suffer a painful death - and no parents and family should have to deal with the death of a beloved child - when medical science is unable to stop the relentless progression of cancer.

And that brings me to wondering what I can do to help change things for kids with cancer. The problem is so enormous. As a first step, Ron and I will walk the Country Music Half-Marathon on April 25th which raises money for the Leukemia and Lymphoma Society. We’ll be looking for sponsors and for others to join us. Who’s in?

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A walk on a warm winter day

Saturday, December 27th, 2008

It was an uncharacteristically warm day today in middle Tennessee. After running some errands, I went by Larisa and Steve’s house to bring them some photos I’d picked up for them. I parked in the driveway and heard a voice calling me. I looked up the street, and there were the four of them - Larisa, Steve, Lily and Sophie - walking toward the house. They had been out for a walk around the neighborhood. Later Larisa told me that Steve had had to carry Lily at times, but that she had walked a good bit on her own. Earlier today Ron and I had taken a walk through the woods on our property. It was a great day for taking a walk.

Lily’s blood counts were good enough last week that she was given permission to go outside and take walks as long as she felt like it. It did me good to see her outside and walking. Later, when we were back inside, she seemed to be feeling so much better than she did on Christmas Day. As we walked into the house, she mentioned that she wanted to order some food from Grandma Carol’s Cafe. She wrote her order on a notepad: Cheese quesadillas, chicken nuggets, mashed potatoes and gravy, pasta, brocolli-cheddar soup. I took the order and headed home. Two hours later, I delivered the food - all homemade except I used instant mashed potatoes. Lily asked me to prepare her a plate with some of everything. Sophie wanted only the mashed potatoes and gravy and chicken nuggets. The easiest of all the dishes to make (mashed potatoes and gravy) were the favorite of both girls. They both had second helpings.

When Lily finished her plate, she went to the kitchen and asked her mom to make some ravioli for her. It’s amazing how much that child is eating as a result of the steroids she is taking. She’s still tiny and frail looking, though.

When Ron and I got home, we finished off the chicken nuggets and had a bowl each of the soup for our dinner. Quite good, if I do say so myself.

The first month of chemotherapy is almost over. Only 30+ more to go.

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Some facts about childhood cancer

Wednesday, December 24th, 2008

*Each school day, 46 children are diagnosed with cancer.

*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.

*One in 330 children will develop cancer by age 20.

*Although the 5 year survival rate is steadily increasing, one quarter of children will die within 5 years of the time of diagnosis.

*Cancer remains the #1 disease killer of America’s children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.

*In the U.S. almost 3,000 children do not survive cancer each year.

*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

*Currently there are between 30,000-40,000 children undergoing cancer treatment in the U.S.

*As a nation, we spend over $14 BILLION (that’s with a B!!!) per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximiately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won’t live through the day.

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Home from the hospital

Friday, December 19th, 2008

Lily came home from the hospital yesterday afternoon. Larisa says that within thirty minutes of arriving, she had more color in her cheeks and was walking around the house more than she had walked at the hospital the whole time. Being home makes such a difference.

A few days ago Larisa told us about one particular doctor at the hospital. This doctor is one of the main oncology doctors who had not been on duty for the first couple weeks Lily was in the hospital. As soon as she walked in, she said something like, “Why is she on an IV? Is she able to drink fluids?” When she got an affirmative answer, she ordered the IV unhooked except when Lily needed medication or something else through her port. What a wonderful thing that was for Lily! No more dragging that cumbersome IV pole with her to the bathroom. It was a wonderful step towards health.

On the way home from school yesterday - on the way to seeing Lily home for the first time since December 1st, I asked Sophie if her mom and dad had talked to her about how the steroids would make Lily fussy, and how Lily might get upset easily and when that happened Sophie needed to remember that it would be the medicine talking - and not something that she had done to upset Lily. Sophie said that yes, they had talked to her about it.

Later, the girls and I were coloring pictures, and Lily got a little angry about which markers could be used and which couldn’t. Sophie just switched to an “acceptable” marker and kept working. She didn’t argue, she didn’t get her feelings hurt, and she didn’t get angry. Lily settled back down and we ended up having a nice time together coloring our pictures. When Lily finished her picture, she carefully wrote on the back: “To Sophie, From Lily.”

One thing I want to remember is that when Sophie and I got to their house, they’d been home from the hospital only about 30 minutes. Lily was settled on the sofa with a blanket over her - the prayer shawl under her - and Bogey, their little Italian greyhound, snuggled next to her. Bogey had missed Lily so much. He would disappear, and they would find him under the covers on Lily’s bed. Lily felt a lot of pride at Bogey’s obvious devotion to her yesterday afternoon.

Lily’s teacher had her videotape an introduction to the second grade program since she wasn’t able to be there in person. Lily taped her intro the other day in the hospital. The program was yesterday. It was so tender and sweet. One little boy asked me later why she rubbed her face and nose in the video. The answer was that the medicines make her face itch and feel funny. So she naturally rubs her face a lot. I don’t think she is aware that she does it - and we won’t say anything so she won’t become self-conscious about it. Once she stops the steroids, the face rubbing will stop.

Lily is home from the hospital - and that definitely puts a smile on my face.

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