Most of this is a re-post from last December 31st. I’ve updated a few things, though.

Today is Larisa’s birthday. It has been a stressful birthday for my precious daughter. It was Lily’s second clinic day. Larisa has said repeatedly that the only thing she wants for her birthday is for Lily’s final labs for this week to come back with zero leukemia cells. We will find out the tentative lab results on Friday and the final lab results on Monday.

So, more than any other year, I am holding precious Larisa in my thoughts and prayers on her birthday today.

On December 31, 1974, RT and I were thrilled to become the parents of our precious Larisa, affectionately nicknamed Stinkeroo by her Grandshaw. Before her birth, RT and I would listen to her heartbeat with a stethoscope. 1974 was before the days of periodic sonograms. So we had no idea whether or not our baby would be a boy or a girl until after the birth. We went into the labor room at the hospital knowing that we’d either walk out with a Paul or a Larisa - we didn’t know which. Ever since I had seen the movie Dr. Zhivago, I knew that I wanted to name the daughter I hoped to have someday Larisa. For awhile we toyed around with calling her by the nickname for Larisa - Lara - but then decided to stick with Larisa. When she was born and we found out that our first child was a girl, we were so happy and we knew immediately her name. The baby was our Larisa that we had been looking forward to for years. She was basically bald for the first three years of her life, but as she grew, she also grew dark curly hair and beautiful brown eyes. She was happy and energetic and a parent’s dream. She thoroughly wrapped her dad and me around her little finger.

The above photo is one of my favorites. It shows her enthusiastic and mischievous nature. I’ve always loved her smile.

This picture is also a favorite. It shows Larisa with her younger brother, Joey. The pigtails were typical. She was an athletic go-getter child - always interested in life, sports, being with friends, and she was/is a great sister to her brother. They had their spats, but have always remained close to each other.

This is how she often slept as a baby - on her back with her arms flung out to her sides. As in everything, she put herself wholeheartedly into sleep, too. She was confident and happy.

This is one of the photos from her wedding to Steve - along with their “baby” (at the time), Caesar. Caesar passed on to doggie heaven quite a few years ago, and they now have two human babies - my wonderful grandgirls - pictured below.

I first wrote about Stinkeroo’s birthday on December 31, 2005, and then on December 31, 2006, I wrote about her again. I hope you have a wonderful birthday, my precious Larisa! Most of all, I hope you get her birthday wish.

About today, December 31, 2008. I was up early in order to be at Larisa and Steve’s house to pick up Sophie at 6:45. Sophie would spend the day with me while Steve and Larisa took Lily for her “clinic” at the hospital. Today would be the big day for Lily - a lumbar puncture and bone marrow aspiration to determine her blood counts, and to make sure that there are zero leukemia cells in her bone marrow. Results won’t be known for a few days.

One thing that was very clear to me today is how much Sophie loves her mother. Of course I already knew that both girls absolutely adore their mother. However, Sophie was so happy to be able to help me prepare dinner for them and then get a cake, birthday balloons candles for the cake and make little apple tarts as a special treat - since Lily loves apple pie so much. Sophie was just ecstatic in her excitement over preparing some birthday surprises for her mother. Sweet, sweet, sweet.

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?

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.

*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.

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.

I stayed home from school today. There was much to do since we expected Lily to come home from the hospital. I woke up with little five-year old Soph pointing to the window and shaking my arm. “It’s morning!” Yes, it certainly was. Pancakes were in order for breakfast: one “S” pancake, a rabbit, and exactly three silver dollar pancakes. I made them and realized we had no syrup. Soph was willing to send PaPa to the store to buy syrup while she and I got ready for school. PaPa returned with the syrup, and I made a fresh set of pancakes. Quick breakfast, and then we were on our way to school. It was an enjoyable and relaxing morning being with Soph. I still smile thinking of her shaking my arm to wake me up.

And, yes, she was late for school. Thirty minutes late, to be exact. I didn’t care. Neither did Soph. Neither did the principal or Soph’s teacher. As I walked into the school there was a sea of purple. I signed her in at the office and got her tardy slip. Then we walked to her class. As we passed classrooms, I peeked inside. Purple shirts everywhere showing support for Lily. I don’t think there was a single teacher who passed us in the hall that wasn’t wearing purple. Wednesdays are Lily’s “bad chemo” day. Last week she and her mommy wore purple shirts to show those bad leukemia cells who’s the boss. People heard about it, and by this Wednesday there are people not only in the Nashville area wearing purple, but in other states as well. So I left school feeling encouraged by the public display of support from the folks at school.

Then I was off on errands. First to Wal-Mart. My daughter had given me a LONG list of things she needed. Basically, they’d been told to get rid of any opened food in the house - whether or not it was past the expiration date - nothing that could be harboring germs. So there was lots of new pantry and refrigerator staples, plenty of purified water - no spring water allowed - and juices. Lots of individual serving items. Then there were the things that made me want to cry - two small trash cans with no-scent liners to carry in the car for nausea after the weekly chemo. They were told those are a necessity - despite the anti-nausea medicine. Then there were the extra sensitive baby wipes. Chemo gets into the digestive tract and does damage when it exits the body. There was a pill-splitter anda pill-crusher. Lily will come home with 15 different prescription medicines. And finally, a baby monitor.

Shopping completed, I made a quick trip to their house to put all the things I’d bought away. I met the cleaning crew there - busy sanitizing everything. I got a new list of things to buy. By now, it was after lunch. I grabbed a quick hamburger at Burger King. I got a message from my daughter. Lily would stay at the hospital again tonight, but would go home tomorrow.

I was in Kroger when my phone rang again at 1:30. I glanced at caller ID. It was Lily - placing an order from Grandma Carol’s Cafe. She wanted spaghetti with sauce and meatballs, brocolli with cheese sauce, black-eyed peas, rolls, and apple pie. I took the order and explained that since I was at the store, it would take about two a half hours before I could get home, make all the food, and then get it to the hospital. That was okay. Quick phone call to arrange for Soph’s care after school since I wouldn’t be there as originally planned.

Hurry home - start cooking. Everything was from scratch - except the pie crust. I made the meatballs and placed them in the oven. The apple pie was next. I should have done the apple pie first because everything else was finished and the apple pie was still cooking. Finally it was done. I packed everything in the cooler and headed to the hospital - arriving around 4:30. As I arrived, the “child life” nurse also arrived to talk to Lily’s mom and dad about how to handle everything when they get home. So I stayed with Lily while they went off to the “quiet room” to talk.

What a joy! Just Lily and me alone for about 45 minutes. Lily ate two platefuls of food. Later her mom and Dad ate, too. While Lily and I were alone we just chatted. She was eager to tell me all about everything. It was such an enjoyable conversation - nothing major - just chitchat. However, she was chattering a mile a minute in between mouthfuls of food. And I enjoyed every second of our visit. It was the first time I saw the beginnings of the visible side effects of the steroids. Her little face was rounding out a tad.

I asked Lily if I should take all the leftovers home with me, and she said no. She wanted to have more later. The steroids she’s taking definitely make her ravenous.

After I left the hospital, I went back by their house to unload the other things I’d bought. My son-in-law and Soph were home, and the house looked wonderful. The refrigerator, freezer and pantry are stocked with fresh food. Clean sheets are on the beds. The carpets have been cleaned, and everything has been cleaned and sanitized. Lily should come home tomorrow in the early afternoon.

I wrote a post two days ago counting Sunday, December 14th as “Day 14″ because Lily’s leukemia was diagnosed around midnight on December 1st. However, the doctors started the count when she began treatment. She had her first chemo on Wednesday, December 3rd. So Wednesday, December 10th was day 7, and tomorrow, Wednesday, December 17th will be day 14. I’ll switch my count to their count system so I won’t stay confused!

If all goes well tomorrow and Lily’s “numbers” on the blood marrow tests are good, she will come home. It will be SO wonderful for that child to be home again. She’s been so homesick. And her little sister has missed her tremendously. Their world has been turned upside down since Thanksgiving, and it will be good for them to start getting to their “new normal” as a family.

As much as I dearly love them all, I will probably stay away for the most part the next few days - just coming by briefly to bring meals and groceries. Despite all the bad stuff, we are blessed.

One of Lily’s biggest disappointments in having to be hospitalized and then restricted to home for so long during her initial treatment for leukemia is that she would miss the second grade program this coming Thursday. She had practiced the songs and was looking forward to it with great anticipation. In kindergarten and first grade, the grade level programs were the highlight of each year for her. She thrives on performing for others.

So to say she was sad about missing the second grade program this week would be an understatement.

Her wonderful teacher decided she didn’t have to miss the program after all. She sent a video-recorder to the hospital along with Lily’s script to introduce the program. Lily practiced today and taped her part this afternoon. On Thursday - at each of the two performances - Lily’s video-taped introduction will be shown on the big screen of the auditorium to begin the show. The entire show will be videotaped so that she can watch it later. I’m quite certain I will cry when I watch it. My guess is I’ll have plenty of company.

Thank God for caring teachers who go the extra mile to make a little girl’s dream come true.

Treatment for childhood leukemia is typically a 900+ day journey. Sometimes it might be less, and sometimes it might be more. Each child responds differently to various medications and procedures. That’s two and a half years of chemotherapy. For Lily, that will take her past her tenth birthday which will be in April of 2011.

I find myself wishing away the 900 days - wanting to get them behind us so that Lily can be restored to her healthy self again. In the past two weeks I’ve had enough of watching her suffer - I can’t imagine over two years of her going through the effects of this treatment - and yet, there is no other choice. Untreated, leukemia can kill a child in about two months. In just the few days leading to her diagnosis, we could see how quickly her health deteriorated. On Thanksgiving, she was pale and not feeling well, but she was still out in the yard turning cartwheels with her cousins and sister. Three days later, she could hardly move off the sofa as the doctors tried to figure out what was going on. Now she gets up and walks slowly to the bathroom and then back to the bed. The chemo and her body’s reaction to the chemo have worn her out.

As I was coming home from the hospital earlier today - tears in my eyes from having to sit helplessly nearby as she cried in pain - I wished for the 900 days to be over. I wanted this behind us and Lily healthy and happy again. Just blink and fast forward two years. This disease is so wrong. It’s unfair that a child should suffer like that - and it’s not just Lily. Being on the pediatric oncology hall so much the past two weeks, I see that there are many other children who are suffering as well. And I see children who have much more aggressive and advanced cancers than Lily. This morning a couple got on the elevator the same time I did and punched the button for the sixth floor - Lily’s floor. I asked them if they had a little one on the floor and they answered that their daughter, Tiffany, wasn’t so little - she was 17 years old. Tiffany was rushed here last night from Kentucky. They don’t know what her diagnosis is - just that there is a mass/tumor in her head. Each day, as I get to know more people on the sixth floor, I learn of more heartache and tragedy. I see babies, toddlers, children and teens fighting horribly cruel cancers. It can be overwhelming.

So my instinct was simply to wish it all away. Poof! Two years gone and this experience behind us. Then, I thought that perhaps I should look at it differently. Rather than wishing away more than two years of our lives - which I couldn’t do anyway - I could choose to look at it as an opportunity to really live life and to savor every aspect of it. I certainly won’t savor the suffering, but maybe if I keep looking at the suffering as a necessary hardship to restore our Lily to health, then maybe I can bear it. Because it’s the hardest thing I’ve ever done to see that precious child suffer. I would do absolutely anything in my power to take it all for her - and yet I am completely helpless in the face of leukemia. I can be there for her and her parents and sister - but I can’t take a single chemo treatment for her or a single pain or a single fear. And the recognition of that fact and our grief at what leukemia is taking from and doing to Lily has caused RT and me to sob many times the past two weeks.

There are many who have lost their children to one tragedy or another. Given the choice, those parents and grandparents would have welcomed something like leukemia because at least after those long years of pain and treatments, they would at least have a chance of having that child alive and healthy again.

So my thought is that this experience is terrible and heartbreaking and sad, and it is worse than what most people go through. I think that we probably couldn’t bear to know some of what is still ahead for us in this journey with Lily. However, it is not the worst thing that people have had to endure.

Maybe there are people who live their lives without facing heartache such as their child’s or grandchild’s having cancer. It sure makes you realize that there is much in life that is totally out of our control.

Yesterday Larisa told me that when one of Lily’s little school friends, M, went with her mother to see Santa Claus at the mall, the mother stayed back to let M talk to Santa. She noticed, though, that it was taking a long time and that at the end Santa had tears in his eyes. He motioned the mother over and said that M had told him that the only thing she wanted for Christmas was for her friend, Lily, to get well.

One of the children at school has a father who works for a Christian music company - can’t remember the name of the company. So the parents and children sent Lily a bag of brand new CD’s. I was there when she opened the gift. She looked at the pile of CD’s and then asked Larisa, “How many kids are on this floor?” Larisa replied, “There are 12.” “Good!” Lily answered. “I can give each of them a CD and still have three left over.” Giving something to her fellow floor-mates was her FIRST response to the generous gift.