Why?

Friends and Family,

Who can answer the question of why cancer happens? Does it have to do with where we live, what we eat, feed our children, and the kind of shampoo we use? Who knows? Who can even begin to unravel the mysteries of why this particular tumor chose a particular person and changed our lives forever? I can't even begin to speculate. Perhaps someday we will know why, but for now it is too hard to think about. I wonder if some of you have your own theories. Someone told me that they heard Stapleton has a higher rate of cancer because of the hazardous waste and other chemicals left over from the airport. Yet I have not heard this anywhere in the neighborhood and we are surrounded by a great deal of people who looked into the question and decided to build homes here. I do not want to talk about it or think about it. How can that be true?

I can say that the tumor changed us forever--made our day to day lives richer and fuller, because we have learned to appreciate all of our blessings and have the strength of family, community, and money to get us through this. Many other families do not have this wellspring of support. But it doesn't make it any easier. When I wake up in the middle of the night I think about the way Allison used to be. Her thick brown hair. Her eyelashes. Her corny jokes and goofiness. She is a shell of this person. There is a kernel of her there, but she is so tired and weak from all of the treatments that it is hard to see her go through this. We have the ability to exercise, burn off energy, and vent, but she does not. I can't share her pain or her feelings, just try to anticipate what will make her feel better. Retail therapy is our main weapon against all of the procedures, pokes, and other painful things she has to endure.

So we worry. Her weight is low, but the people at Children's tell us to keep on as we are for now, and that they are watching her closely. Her spirits are low, but she does like to be at school when she can and her teacher is a godsend.

More questions: What kind of long term impact will this have to her? Will she be able to tackle life the way she did before? Why does chemo have to kill everything? Why???

Jack'o'lantern, Allison Winn

On the ferris wheel at Navy Pier

We Had a Blast in Chicago

What a great time. We almost didn't go, because Allison woke with a bad nose bleed at 1:15 on Wed. morning, but as our oncologist pointed out, we have just as much risk in Denver as we do in Chicago, and after spending all night in the Childrens ER, we were ready for some fun. We conquered the American Girl store, an overwhelming, but fun, place. We stayed in luxurious accommodations at the Drake Hotel, promenading with all of the fancy people on Michigan Avenue. We took the El in from Midway, an adventure, had high tea at the Drake ($$$$!), marveled at the Shedd Aquarium, and at the coolest piece of art I've ever seen in Millennium Park. It was a great trip. I posted our pictures in a link to the right, and of course, scanned the famous cover girls who had a photo shoot at the American Girl store. I decided our family's story is similar to Kit, American Girl from the Depression, who faced major changes in her life when her dad lost his job, but rolled with the changes and still learned from them. We met some wonderful people, too. Now back to reality! Bummer about the Rockies, but we are still proud of them. We got some cool stuff from Dinger--he is the nicest mascot I've ever met.

Bye for now.

Update

We now have three chemo treatments under our belts. Spent time at the new Children's, which is a remarkable place, although there are still some bugs to work out. It is cool that some of the stress of being at that old cramped building has been eradicated, and there are so many new things to marvel at at the new hospital. But let's face it, it's still a hospital! I would much rather not have to go there. I keep reading about people who say that cancer has its good side, and I guess one good side for us are the amazing people we have met who have helped us through this. We saw many of them this past week.

I haven't been able to update you all. I hit a real low point and didn't have the energy. All of the stress of the past six months culminated and we all realized we had a long way to go without any end in sight. I know time is on our side and we will get to the end but I don't know how. Again, we are getting relief from friends and family in the most unexpected ways. When I need a lift, I get it from something nice someone does. And being with Emily and Allison, of course, who demand so much but also give back unlimited love and inspiration.

We saw a bunch of people who all said how great Allison looks. When I hear that from someone who hasn't seen her in awhile, I realize they are right. I can't believe how far she has come. She has been going to school, which is such an achievement. She loves going there, and we know that if she wants to stay home it is because she really doesn't have the energy. But when she does get there the kids have been great, and her teacher and principal have been understanding and helpful. Girl Scouts has been a great source of support and fun for her. The teacher organized the kids and their parents to make dinner for us every other week! The most beautiful mac and cheese and cookies are made by second graders who are learning how important it is to take care of others. A friend of mine also has been teaching her tap dancing, and I think she really loves doing something with her body and seeing it move. She is able to remain involved in the things she loves, which has been important for her to remain some sense of normalcy. I hope she can continue to do it as we get farther along.

• Some things we have been laughing about and doing lately:
  
  We love the song that Jane and Michael sing about finding the perfect nanny in Mary Poppins.
• Watching the Rockies!!!! Go, go, go!!! We hope to go to one World Series game!
• Getting ready to go to Chicago and the American Girl store from Oct. 25-28.
• Mooning over Zac Efron--so cute.
• Emily joining Daisy Scouts.
• Emily learning to write phonetically and making books every day since school started.
• the tooth fairy has visited our house three times in the past week: once for Allison and twice for Emily!

We'd love to hear from you if you want to write back and let us know something great--a reaction to the blogs, something silly, or just to say hi.

Best,

Dianna

Information for Bill Roberts Parents and School Community about Allison returning to school

Center for Cancer and Blood Disorders
1056 E. 19th Avenue, Denver, CO 80218





Date: August 17, 2007
Regarding: Allison Winn
To: Dianna Litvak
AGE: 7 year old

To Whom it May Concern:

Allison Winn is a patient of ours treated in the Center for Cancer and Blood Disorders. Allison was diagnosed with a brain tumor and is handling treatment well. As she returns to the 2007 academic school year, there are a few things for school officials and peers to keep in mind.

Cancer is a disease that people of all different ages and races can get. Cancer happens when the body cannot control the growth of some of the cells in your body. These cells grow faster and in different shapes than they are supposed to. Cancer is not something that you or anyone caused you to have, cancer just happens sometimes.

Developmentally, children Allison's age often believe that the patient did something "wrong" or "bad", which has then caused the patient to become ill. We as adults know that this is not the case and often need to reassure children. We don't know why some children get cancer and others don't. Perhaps some day one of your students will be doctor that figures this out!

Children sometimes believe that cancer is contagious, like the flu. This is not so. A person cannot "catch" cancer from another person. However, a person with cancer can catch colds easier than most other kids! It is important to help keep Allison safe from germs by washing hands after the restroom and before eating. It is also important for everyone to cover their mouth and nose when they cough or sneeze, and follow that up with a good hand washing too! If students have a fever or cold symptoms, staying home from school that day would not only protect Allison, but it will aid in the ill student's recovery too!

Children this age also have quite the imagination and may believe that cancer has changed the child. That the child with cancer has become someone else. Please remind the students that Allison is the same person they knew the previous year. The same girl that loves to eat ice cream and play with her sister!

Allison may look different on the outside, but she is the same, intelligent and playful girl on the inside! If students have questions about her appearance, or why she may not be in school, Allison is the best expert they can ask!

It is important to remember that childhood cancer is different than adult cancer. Children heal faster and are often more resilient! If students, parents or staff have further questions, staff at The Children's Hospital are available to come to your school for en educational presentation. Please contact Wanda Simms, RN, Molly Hemenway, PNP, or Allison Donohue, CTRS/CCLS at 303-764-8357.

Thank you for your time!


Allison B. Donohue, MS, CTRS/CCLS
Therapeutic Recreation/Child Life Specialist
303-864-5617

First Day of School

Allison and Emily are so excited about starting school tomorrow. We've been so consumed with Allison that we have just now started to prepare ourselves for Emily starting kindergarten and officially becoming a big kid. Unfortunately that is the way it has been all summer, but Emily is still plugging away and the girls are working on becoming pals again. We have more than a little anxiety about tomorrow and the schoolyear, but all we can do is try and figure it out as we go along. Allison will go half days for now and have a tutor to catch up on the stuff she is missing in the afternoons. We have solved some of the juggling of our schedules by hiring a new full time nanny who starts next week. We have to plunge in without any other way to do it. Everyone is bending over backwards to help us, and that is a saving grace. But before we know what will work we just have to get through these first few days and see what we can handle. The next big chemo treatment is Aug. 30. Check back for photos of the big first day of school.

Things I know

Early morning thoughts that have been swirling around in my head:

• I was telling someone I don't know very well about my stint as a mother so far. When I was younger, and even when Brian and I were married for a couple of years, I didn't consider myself an ideal person to become a mother. Both times I got pregnant, I was surprised, and found I had to rearrange everything--my life, work, and relationships--to allow these people to come into our lives. I've always been a little curious and even envious by people who knew they wanted to be parents and planned their lives to make a family. But this person said, when I told him about what was happening, that I was meant to be a mother. It got me to thinking about whether we choose children or they choose us. Emily has said this to me many times: "Mommy, you were the mommy I was looking for." When I look into her honest and open blue eyes as she says it, I know it is true. I can just picture baby spirits shopping for mothers in Mothers-r-Us and finding the one that suited them best.
• I think my faith in G-d is much stronger now, but not because I believe that He has chosen this fate for my family to have to endure Allison's sickness and the possible loss of my beautiful child. The way I see it, G-d doesn't want humans to suffer, and would never wish to see a child, or anyone, go through pain, loss, or other tragedy. But His presence makes me stronger and I feel better knowing that perhaps He has looked into my soul and wants me to keep going.
• I believe in positive thinking, but not because it can change outcomes. It keeps you going when things are really terrible. We constantly try to see the best side of things, because it is in our nature. It is our coping and defense against the things the world throws at us.
• I believe in community. We all have an important place in the world, and our connections to one another make life worthwhile. Communities keep individuals afloat, and use the strength of a group to help those in need. I know that I couldn't be who I am today without my connections and relationships and I am very thankful to be surrounded by so many people who can help us. I hope to repay the favor someday.
• I also believe in the power of a wish, which is why I think the Make a Wish Foundation is a remarkable thing. As a family, we have the ability to give our children so many things, but some families are unable to do this. This foundation makes it possible for any kid with a life-threatening illness to get their wish granted, right out of the fairy tales if they desire. This alone keeps them going, just to know that magic really can happen, and you can get what you want even while you have to go through a hell that no one should ever have to experience.

OK, that's all for now. Just wanted to get those thoughts out into the world and see what comes back.

Dianna

Allison made it through chemo, better than we thought possible. Back in May, when she was having a hard time with radiation, I started dreading the chemo because I knew it would make her sick. But she put her mind to doing it, and that made a big difference. She is one tough little cookie, something that will serve her well in the years to come. She said she didn't think it was that bad, and I think was relieved to know exactly what to expect for the next eight rounds.



Her spirits have been much better. I've been saying that we've been waiting for her to come back as she heals after surgery--her speech, goofy sense of humor, and doing her favorite things--and I think she is pretty much here as of the last two weeks. She's back to cracking up about the stuff she used to love--Junie B. Jones' antics, gross jokes, and being silly with her friends. She has this incredibly wacky way of looking at things. Yesterday at the Sweet William Market she adopted a huge furry stuffed rabbit, named Carrot, who is so covered in white fur you can barely see his eyes, feet, and front paws. (She named him Fatty at first, but then changed her mind.) She has this way of looking at something and knowing its place in her world, a knack for surrounding herself with her favorite things.



You can tell when a kid starts to feel better because they just naturally get back to doing all of the things they love. Allison has started walking around a lot more, her balance is improving, and her abilities are returning. She can sit and draw for two hours, really focusing and concentrating on creating something. We can now relax and enjoy the rest of summer and get ready for school. We don't have another big treatment until after school starts.



This blog seems to only reflect the extreme highs and lows of my emotional state. I feel like I either sit down and write when things are going great, or really awful. This doesn't necessarily give the best picture of what is actually happening. But the past few weeks have been full of a lot of good times and laughter. My family is getting well again, and as long as that happens, we are alright. We have also at times been utterly exhausted and overwhelmed. But we passed another milestone. There is still so much to come that it's hard to dwell on any one thing. Now I know that we have gotten through the hardest part.



Dianna

Status after Chemo

We spent the day at Childrens yesterday, in the oncology clinic, with all of the other kids getting their treatments. Everything went ok, as well as it could, and we weathered our first cycle. The clinic is a busy place, unfortunately, with a lot of families milling around looking a lot like us. Not very encouraging, but at the same time, it helps to know that you aren't alone going through such big changes and all of the worry that comes with seeing your kid so sick and frail.

She looks pretty puny today and isn't feeling well at all today, and will probably stay sick for awhile, given the enormous impact of what has just happened to her little body. I got the messages that many of you sent, via email, phone, and mail, and wanted to say I appreciate your thoughts.

We gave Dr. Nick Forman all of the money you helped us raise and he was very thankful, and surprised, at the large amount we were able to gather. He said they didn't raise that much at their shave-a-thon at the hospital. Allison drew him a picture of an orange cat and wrote him a special message, and Emily drew a picture of him and Allison smiling together in a hospital room, with a red sun shining through one of the windows. We have the Relay for Life tonight, which has helped keep our minds off of the first chemo treatment. Hopefully all, or at least some of us, will be there to soak in the energy and goodwill at the event.

I will write more later about the fairy godmothers who visited us from Make a Wish on Tuesday night. What an amazing foundation and an amazing gift they have given to our family.

Love,

Dianna

Starting Treatment

Everyone,

The last four weeks have been very healing for Allison. She has not had any kind of treatments, and we have been doing many wonderful things as a family. She is now writing, drawing, reading, and speaking back at her normal levels, although she still has a little more healing to go before she will be at 100 percent again. We are still trying to get her to gain weight, but she is holding steady at 44 pounds. People are feeding us so well. I keep saying it takes a village to keep her weight up. We went to Steamboat Springs--to the pro rodeo, down the alpine slide three times, saw the hot air balloon rodeo--and to our condo and the good times we always have there.

This week Allison starts her first chemotherapy treatment, on Thursday. Until we get through the first one, we won't know what to expect. We are told the first few won't be too bad, and that it will get worse as the treatments go on. We expect to be done with these treatments by May of next year. She got a new Ipod to help get through long days at the hospital and home.

She gets to meet two volunteers from the Make a Wish Foundation this week. After considering a family vacation to Egypt, she is now thinking along the lines of Los Angeles--Disneyland and the American Girl store apparently are an acceptable alternative. We are glad there is something to look forward to before she starts this next phase. Her grandparents have a trip planned to Sea World in August, and she and Emily will spend three days hanging out with dolphins and killer whales.

Thanks for staying tuned, and I'm sure we'll get back to keeping you posted as the days go by.

Take Care,

Dianna

A Resounding Success

Here's the rundown of our event on Saturday. Twenty-one shaved heads (thanks, Sharon!). If I missed someone, please let me know:


1. Brian Winn

2. Brian Rieck

3. Shane Stickel

4. Jamus Skelton

5. Ben Perez

6. Justin Bresler

7. David Kosakowski

8. Trude Bershof

9. Will Pockman

10. Nathaniel Bowen

11. Nicholas Panagos

12. Eli Tentori

13. Brett Purdom

14. Graham Bowen

15. Derek Peterson

16. Nancy Wilson

17. CJ Boehm

18. Jackson Adams

19. Mark Rudolph

20. Luke Bowen

21. Andy Holleman



TWENTY ONE FOLKS! Thanks most of all to Steve Bowen who shaved every head. He did mohawks for the boys, and full-on buzz cuts for the men and two women who braved the clippers. Manit Nick Purthong used his magic fingers to give chair massages, and Eric Tentori, Christa Doty, Karen Litvak, Gail Dunn, and Sarah Kaufman kept the kids happy with face painting and manicures. Tracy Perez kept us organized and did all of the bookkeeping and Cindy Stickel made the awesome signs. Many hands got us set up and took everything down. With one more beer, I might have been convinced to join the shaved ranks, but I'm waiting a few more months since she's going to need bald people to hang out with for a while.


The grand total, far beyond anything we ever expected, was $8,223. Going into the event, we had raised approximately $2,000, so the amount gathered in our little park by about one hundred or so people who wanted to honor and help Allison is especially impressive. I have no words to explain how we feel about the support and love and generosity of all of you. If we can, our goal is to be able to hand the Neuro-Oncology Clinic $10,000.


Thanks for all of your participation!

Love,

Dianna

The Bald and The Brave

We want to thank all of the brave souls who are submitting to the clippers on Saturday....read below!!

We love you all!

Dianna, Brian, Allison, and Emily

"Bald, bald, bald--bald as a ping pong ball--now that's BALD!"

Trude Bershof, a friend of Allison's and her grandma, told her friends that if she could raise $1,000 for Saturday's fundraiser, she would shave her head. She is up to $1,500 and counting! As she said, "What's a little hair?"

We are up to at least nine grown-ups and one kid who have said they want to participate in the shave-a-thon--eight guys, one friend of Al's, and one brave grandma!

They are:
Brian Winn

Trude Bershof
Jamus Skelton
Will Pockman
Brian Rieck
Nathaniel Bowen (Al's buddy)
Shane Stickel
Justin Bresler
David Kosakowski
Andy Holleman

WE LOVE YOU, TRUDE!!! You have made us smile from ear to ear!!!

And don't worry everyone, you'll get your own bottle of sunscreen and a bandana as a REWARD for your efforts!!!

Coping

Friends and family,

We are really falling down on the postings. Some of you might wonder why. Some days we really have nothing at all to say, mostly because we are status quo, although Allison is improving a tiny bit each day. Sometimes she does show improvements but we just don't know how to tell you about them yet. Other days we have nothing that we feel comfortable about sharing in this naked blog world--honestly it's really painful, miserable, or just downright sucky. Most days we are so worn out we can't. Today I would have thought that was the case, but then I got the urge for some reason, probably because our outside world keeps reaching in and showing us that we are not alone. I know you all want news and that this is a great way to share it. But really sometimes the news is not at all what we can, or are willing, to share, given the realities of living day to day with the massive changes that have happened to our family. I have to tell you this because so much has changed, and even though we still want to be part of our old world, there are times that we are not capable of it. We are really struggling being in both our past and present. As for the future, I can't even go there. We just take one day at a time.

So far the shave-a-thon this Saturday has attracted a stir. I think we are all going to have a hard time getting the energy to be there, but it will all be so worth it. When there is nothing else to smile about, Allison does smile at the people choosing to be bald in her honor, especially when she hears that she will be the prettiest one out there. Today she recited their names while she got poked for chemo. Yes, it will make a difference to her, as long as she is awake for it!!

So yes, we are coping, not always very well, but we are.

Cheers,

Dianna

44

Friends and family,

I believe in the power of numbers, and want you all to know that Allison is eating so well that she gained 3.5 pounds in a week. She is now 44 pounds, or 20 kilos, a strong number, and is only four pounds from her pre-surgery weight. With trips to Dairy Queen, Arby's and McDonalds for shakes and banana splits, hopefully we will see her pass 48 pounds and actually get into the 50s in the next few days. She is finally gaining some ground on the nausea and sickness that permeated the first two weeks of radiation. Now that the radiation field is smaller, she is feeling much better. Her speech is returning, along with her energy, ability to walk, and desire to play and be a kid again.

I am starting work tomorrow while she is on an upswing, something that will really help the transition. Sara, our nanny, starts working with us on Monday. Brian will begin to cover the radiation and chemo appointments, and our family will help us get to additional therapy and other needs. We are moving forward now, instead of backwards. We have decided to let everyone know that Allison does not have cancer anymore, now that the tumor has been removed and all of the tests for more cancer cells have come back negative. Now we are safeguarding against getting any more cancer cells, but she is cancer free at the present. I think it helps her to cope with the issue and not feel so weak or fragile.

Emily and Allison are learning how to be together again. With all of Emily's strengths, she is still having a hard time adjusting to the changes in her big sissie, who used to rule the roost but they still got along so well. Their incredible relationship before surgery meant that each had a playmate from dawn to dusk with very few disagreements. Now Allison is grumpy sometimes and Emily is not used to it and she has had a hard time getting used to the physical changes in her sister. It looks like along with other adjustments, their relationship will have to take time. But Allison is re-emerging. Certain gestures, sayings, and other Allison ticks are starting to resurface, and her memory is sharper than ever.

Everyone asks how I am, or how Brian is. We are fine. We are coping and talking and still marvel at the support of all of you. We see so much joy every day and we do laugh a lot, about things little and big. I think I said this before but I feel like our lives have become exaggerated versions of our life before surgery--both the highs and lows are so much larger and pumped up in volume.

Thanks for keeping in touch. We are planning an event to raise money for pediatric neuro-oncology research and involving the shaving of as many heads as we can muster in the little park in front of our house. Keep posted for more details very soon.

All of my love,

Dianna

Emily Ruby Winn = Energy = MC Squared

Our Constant is Emily Ruby Winn.

Otherwise known as Bubbles.

Many moments over the last 6 weeks have been made endlessly easier by the greatest little sister in the world. She is total Teflon, total positive energy, and extraordinarily magnificent. She has made Allison and her parents light up with her simple, undeniable, presence.

She turned FIVE today yet she has granted her parents five hundred years of joy in these short years. To think she was conceived with an IUD in place, something that happens to less than one percent of all IUD users.

Thank G-d she is here. She keeps us going, because she distracts us and reminds us of all that is normal and happy in the world of a five year old. In the hospital silly stories about Emily were our staple for getting through boring afternoons and just before bedtime. Everyone wants to know how she is doing. We think pretty well. She is happy now that we are home together, and even though things are not the way they used to be, she knows they will be some day. Our neighbors keep her busy with scooter races in the alley, playdates, movies, and general kid stuff. She has more friends than she knows, who will do anything to spend a little time with her just to hang out. When I ask her if she is sad, she shrugs, and says no, she is happy, everything is ok. Maybe this is the right age to have to deal with this kind of family trauma, when she can still experience so much joy without worrying too much about the future.

She wore a princess tutu tonight, lounged on her blow-up Barbie chair (with matching ottoman), played with her Bitty Baby (named Cora) and her Groovy Girl horse and knew that all was right with the world. When we get the pictures developed, we will share them with all of you so you can see the light in her eyes.

Love,

Brian and Dianna

Two down, four more to go

Two weeks of radiation are now over. Today was the last day Allison spent on the treatment table face down while radiation took place along her spine and she got to bring home the mask fitted to her head because it will no longer be needed. She'll use a new mask starting on Monday for the rest of her treatments during the next four weeks.

I told Allison she had passed a milestone today in finishing this first phase of radiation. When I asked her if she knew what a milestone was, she said she didn't, so I said it was kind of like kindergarten graduation, or the end of a phase that she had completed. Horrible comparison, no wonder she wasn't excited about it. They did a little ceremony at the radiation clinic to mark the completion, with balloons and bubbles. Yesterday when Allison had a hard time getting on the table, and started crying because she didn't want to do it, the radiation therapist, Joe, leaned down and spoke so kindly to her. He said that even he, an old man, felt crying sometimes, and it is ok to cry because it makes you feel better. A little Rosie Greer in the background would have made it a TV perfect moment. But still he helped at just the right time, when both Allison and I were at our wit's ends. It seems like we rely on so many people, family, neighbors, friends, for these small pick me ups. They really help keep us going when we have no idea what to do next.

Her moods are black, part of the lingering posterior fossa syndrome. She has started eating a bit more thanks to steroids, so hopefully she will regain some of what she has lost during the last week when she had no appetite. I'm hopeful that we won't have the same problems we did last Saturday with tremendous nausea so we can move forward a few steps instead of backward.

In the meantime Brian and I are getting busier and I am getting ready to return to work on June 1. Brian has started seeing patients again, and it has been good for him to get back to work. We do all of our rehab appointments at Presbyterian St. Luke's Hospital so we are near him and stop in and see his partners and staff.

I passed my thesis defense a couple of weeks ago and have to turn in my thesis to complete all of my requirements for a master's degree in history at CU Denver. That milestone is almost gone, too.

Getting back to our old lives helps Brian and I a great deal. Juggling work, family, and cancer is going to be a huge challenge. Thanks to everyone who is helping us with meals and house cleaning. These two things are helping keep us afloat, both with sustenance and a clean and peaceful oasis to rest in. Thanks so much!

Love,

Dianna

Down

Everyone,

We are having a hard go of it today, and will probably have a hard day tomorrow. The radiation made Allison nauseus earlier in the week and we thought we had it licked with more medicine, but this morning proved that wrong. She is not feeling well at all, and it is all we can do to keep a bit of liquid in her. It makes me realize just how hard the next few months are going to be. When I think about how I am going to handle all of the side effects from both chemo and radiation, I start to get worried. But it's like we've known for awhile, it will have to be one small step at a time. That's all we can think of now because if I get too far ahead of tomorrow my head starts to spin, or I see red, and either feeling is not one that is very helpful right now.

Thanks for staying posted to the blog even though we aren't posting as much. We simply do not have as much time, energy, or things to say beyond the fact that we are doing this day by day and praying for recovery. Rehab started this week and she is getting stronger, as long as her tummy cooperates.

Your birthday greetings and wishes for Allison were really sweet. We had a lovely small party at home. All I can say about Casa Bonita is that we went, and hope to return some time when we can all really enjoy it. It was hard. Birthdays are going to be hard for awhile, as is Mother's Day and other holidays and milestones.

Thanks for helping at a distance. We are still overwhelmed by your generosity, notes, food, and gifts that are left at our front door but not at all ready to re-enter the world just yet. We are just trying to get through these hard days, but soon we'll be back out and about.

Take Care everyone,

Dianna

"Good"

Ok, you have to know: Allison is talking again! She began on Friday morning. Brian came in to her room and asked her how she slept, and she said, "Good." She kept repeating one syllable words all morning, and by noon, had begun answering questions with simple answers. By the time I checked on her in bed at 9:30 pm, she rolled over, even though I hadn't said anything and said, "I don't need to go potty." Can you tell the question we have been asking her morning, noon, and night?

I hope this brings you as much joy as it does us. When Emily heard she started jumping up and down whooping for joy I, of course, heard "mommy" for the first time and burst into tears. She read aloud last night, and even though some of the sounds are harder than others, she did a great job. Speech therapy will begin to help with the rest. She reached this milestone 28 days after the surgery. Now she can let us know with words how she is feeling, what makes her scared, or what she wants to do, even if it is "Leave me alone and shut the door!" Or, "No, you can't play with my pink Leapster!"

We are going to Casa Bonita to celebrate her birthday tomorrow night!!!! Wahoooo. She has begged to go back ever since we went after the Mexican Rodeo at the Coliseum. Here we come cliff divers, outlaws, and damsel in distress--you'd better be on your cliff on Monday night!

Love,

Dianna

Our New Normal

Hi everyone,

Glad you all got to see the euphoria of our homecoming, thanks to our wonderful neighbors who showed Allison just how special she really is. The fire truck and visit with the firefighters was especially cool, and one neighbor said there was not a dry eye on the block. I know I cried a river of joy that night and I will not soon forget how wonderful it felt to bring her home. She was overwhelmed with happiness. The look of contentment on her face when she lay down in her own bed was spellbinding.

She may look a little different, with stitches all over the place, and with a couple of new added items in her body (a shunt, mediport), but she is minus one yukky tumor, and she is still the same girl. Everyone wants to know how she is, and I would say she is doing the best she can now that she is back home. You might remember she was diagnosed with posterior fossa syndrome, also called cerebellar mutism, which means basically her coordination is really off and she is not talking yet. Her eyes are still not tracking together, at least not all of the time, but will slowly return to normal. No one knows why some kids get this, but everyone says she will be talking again, we just don't know when and whether or not it will affect her speech or cognitive abililties. But she has started mouthing words and is starting to look more like the kid you all know or saw in some of those pictures. Her arms are getting to be more controlled and her balance is improving. Most importantly, she is eating really well and is probably gaining back a lot that she lost when we were in the hospital. And today she even picked up a Junie B. Jones and read a few pages. My kid is coming back, slowly but surely. I want her to be able to read--her solace before surgery--during this long convalescence at home so I hope progress on this continues.

Tomorrow we go back to the dreaded radiation oncology clinic at Fitzsimmons for the simulation of her radiology treatments. She will have to lie on a table face down for more than an hour, and be moved and maneuvered and fiddled with so that the technicians can finalize their radiation plan. She already had her radiation masks made, and Bunny had one made too, that she will wear each time to protect the rest of her head when she gets her treatment. Her strength and will power in doing this were something to be proud of. Even though the 7th is her 7th birthday (in 2007, no less) she will begin radiation on that day. We will bring a cake with us to celebrate after she is done, and have no other commitments that day. She will continue radiation five days a week for the next six weeks. Then the week of the 14th we start our weekly visits to the oncology clinic at Children's for chemo and checkups with our nurses and doctor. I'm finding it hard to believe that these places will soon become our haunts, but our doctor said that we will soon get used to this new routine, and this new "normal." I'll be calling friends of friends who we know have gone through this to hear more about how they adjusted. These clinics are warm, friendly places, but the things that go on there are so beyond my understanding that I have a hard time even walking in without shaking.

At least we are back home. After tonight I will have had three whole restful nights in the same bed with my husband and my kids sleeping nearby. When I wake up I don't feel like something is missing, but going to bed and easing into sleep is the hardest.

Love,

Dianna

Allison is Sleeping... At Home

April 30, 2007
Allison Ann Winn came home this evening.
She has flown on the wings of an extraordinary effort by all the doctors and nurses at Children's and by the support of all those who have read this blog.
Your thoughts and comments have been incalculably helpful over the last month.
When I say thank you to any and all who have helped, I mean this with all the sincerity I can muster with a tired handshake, hug, nod, or tear.
I, and Di, have slowed down our writing on this blog over the last few weeks, I think mostly secondary to mental exhaustion. I definitely have the energy tonight however. Its odd how I can be so reserved with my thoughts with friends but found this blog to be a cathartic experience to the world.

I spent about a half hour outside tonight in the warm air, staring at the clouds forming, gyrating, and swirling. Most importantly, I also caught a glimpse of Allison's star. Only Allison knows which star is hers. Its a secret I shared with her several nights ago on the phone. I'm sure it has some silly number and someone else already named it. I, however, have commandeered its brilliance for my seven year old. If you go outside and look tonight, you will recognize it. This particular star burns mostly white, then blue, and at times red. I hope everyone can find it, but if not, there are plenty to choose. (Nope, not that one, I got that one for Emily.)
The point is this. Now I can go, look, and dream.

I know this. Tonight, everything is just fine. We are where we belong on April 30, 2007.

Brian

Other Somewhat Serious Thoughts and Movie Analogies

I thought it about time to return to the blog. I had skipped looking and writing on the blog for two or three days for several reasons.
First, I couldn't look at the pictures of Allison and family. It reminded me of a past I could never recapture. I desperately wanted our pre tumor life back. Imagining living life with tumor (hopefully well on the way to eradication) was so foreign and utterly distasteful.

The other reason I stopped looking at the blog: I felt uncomfortable being called a great parent or dad. This thought will require a bit more explaining.
The blog in its initial week was a mental life saver for me. Every ones thoughts and comments truly made me feel I wasn't alone. After a week, the blog began to upset me. I honestly didn't like reading what "great parents" we were. I completely understand the positive intentions of the comments but i guarantee that I did NOT feel like a great dad.
My take.
Dads and moms, at least in this scenario, step up to the plate because you don't have a choice. You learn, and very quickly, that you either face your very new reality or you melt. I did melt for a period, Di and a few of my neighbors can vouch for that. I returned to the "planet of lucidity," as i like to refer, because I had no choice. Its really that simple.


First movie analogy. I have never seen the movie ET, yes that's right, never. However I do remember the main premise of ET unable to contact his own alien friends. He builds a box or something attempting to "phone home." I think about this, at night only, because Allison has a red pulse ox on her little finger. In a dark hospital room, that is all you can see floating around. I have these visions of Allison raising her little 6, almost 7, year old finger and saying her first words since surgery. Hopefully something more profound than whatever ET actually said. I keep thinking she will stick that red finger in the air and quietly say "THIS REALLY SUCKS."

Second movie analogy. Happy Feet. I have seen this on DVD in the hospital twice now. I am Memphis the emperor penguin. Male emperor penguins spend long winters watching over and sitting on their wives's eggs. The female penguins go off on the fish hunt. Due to benefit issues, Di will likely be headed back to work quickly. The importance of secure and lasting benefits for Allison are of paramount importance now. I am self employed and, other than health insurance, have no benefits. No sick/vacation/flex time or whatever. I am eating my office overhead rapidly now. However on the hugely positive side, I can be flexible with my hours due to having great and understanding partners. I also have a job which I can return to and quickly, hopefully, rebuild. So why am i Memphis the emperor penguin? Cuz I'm gonna sit on Allison and Emily for the next month or so and hatch em. And I don't drop anything.

Allison continues to make progress. We may be transferred to rehab in the AM. Possibly home within a week. As long as she is making progress here, we will continue to utilize the deep resources of Childrens Hospital. Home seems that much closer to us though.............
Brian

One More Baby Step

Surgery is over and everything went fine. She no longer has the orange tube sticking out of her head like a robot and the external drain is also history. We took pictures of it just in case she doesn't remember. Now she has yet another sore spot on her head, and also will probably be sore along her neck and in her tummy where the tube was placed. During the next few days and weeks we will know for sure if the shunt is working properly. The neurosurgeon thinks she has had hydrocephalus for awhile--maybe even since kindergarten--although I am not sure what this means. She progressed so much this year in school, it is hard to believe that she did it with fluid slowly accumulating in her brain. And yet maybe this also explains her balance and coordination issues, which I thought were hereditary since she comes from a long line of klutzes, myself included. We will never really know.

Now that this word "hydrocephalus" is part of our family vocabulary I have to take time to get used to it and better understand how the shunt will fit into her future. We have passed this milestone and I am relieved. Allison was pretty scared about the surgery today and cried her first tears. I am so glad she is able to get some of her anxiety out, and is not bottling everything inside. But tonight she was glad it's over.

We met another family today whose daughter just turned seven last week, was diagnosed with the same tumor, and had the tumor surgery one day before Allison. I felt like I was greeting a fellow warrior when the mom came over to introduce herself during physical therapy today. They are from Steamboat, and have to spend the six weeks of radiation in Denver. They, like us, resisted the shunt, but will have one placed during the next few days. I plan to help them during their stay in Denver and I hope too that our daughters can gain some comfort in knowing that they are going through this at the same time.

There are so many families here with hard luck stories. Tonight a new mom and daughter came on the oncology wing; we saw them in the surgery waiting room and now they are spending their first night at Children's. With nearly three weeks under our belts, we are like veterans. We know when to hit the showers, how to doctor the coffee, hide our stuff in the fridge, have learned the names of the many smiling faces who guide us each day. I wish I could shepherd them through but know they have to get initiated just like we did.

So many of you have weathered loss, pain, and turbulence and you have reminded us that you survived and that we will too. I have seen the pain in your eyes, like you were trapped on another world but returned with faith in life and human connections. You've moved on and have embraced so much, including a very grateful us. Why does life have to present such extremes? Why do we have to suffer so much to truly appreciate the beauty and joy of our world?

Dianna

Three Surgeries in Three Weeks

The last few days have been very hard but Allison is slowly getting better. We had hoped that she would not need to get a shunt to regulate the absorption of cerebral spinal fluid and that her body would begin this process again naturally. But she is unable to do this, and is scheduled for a shunt operation on Monday at 5 pm. Brian and I have some real concerns about the shunt, due to problems with infection and malfunction, but at this point we have no choice. At least it will allow us to say goodbye to the infernal external drain and hopefully make some real progress on getting out of this hospital. I'm still uncertain as to when that will be, but everyone here wants us home before we begin outpatient radiation and chemotherapy.

She is so much stronger now. She is taking steps, assisted by a therapist, and has begun eating yogurt, applesauce, and other things she likes, in addition to being fed through a tube. Once she recovers from the shunt operation we will be better prepared to go into the rehabilitation phase of her hospital stay and focus upon all of the things she will need to be able to do successfully at home. Then I know she really will begin to heal. The last few days, as I said, have been the hardest. Brian and I are both walking zombies, but I keep thinking that we only have a little more than a week, hopefully, before we can all be home again together. The pain of what we are experiencing has become more pronounced, but we at the same time are learning to deal with it better. We have so many uncertainties in the future, but for now all I can focus on is getting my girl home again.

A High

Allison is better and has delighted everyone who walked in the room with her gorgeous smile that appeared over and over again today. Finally the army of nurses, doctors, and therapists who met her as a sick, weak kid in bed are getting to see her true nature. She is also much more feisty, and has started complaining and trying to communicate her frustrations through her voice, which makes for long nights at the hospital, but in the end is a true milestone, I think, in her recovery. We had a personal visit with Mickey and Minnie today, and she smiled from ear to ear as she sat, for the second time, in a wheelchair. I don't think you would believe me unless you saw the pictures that our neighbor Jim, who luckily had his camera, took of the meeting.

The posts from my long lost pals are so encouraging. They give me a tingle along the spine, and make me remember the many good times and the good people I have known. I'm sorry this bad news has sparked the reconnection, but still glad to hear from you all in your far flung places. Eli in Taiwan, no less, who posted an enduring message of meeting life's trials with hope and life. I think we need to get a world map and chart where our friends are so Allison and Emily can truly understand the scope of our connections and how close the World Wide Web has brought us. And what do I say about my friend Larry Borowsky? Agreeing to go bald to help kids with cancer is a fine way to help out, and it might even improve his appearance! (Sorry, Heidi, I couldn't help it.) Please check out the web link to see for yourself. The place he is getting shaved, Hill, was my middle school. I also heard from Emily's teacher today, who donated blood here at Children's. Another great way to help if you are so inclined.

I am going to really enjoy this high, especially after our plummeting lows of the past few days. I know there are so many challenges, but still the joy I feel right now is undeniable. Who cares if it is a sleepless night with a restless six year old? I can see something more than long days at this hospital. I can even start to imagine coming back home again, thank G-d.

Bless you for your words and wishes and help me celebrate this night!

Dianna

A Quiet Place

Hey all,

Al's resting peacefully now. She rested a lot today, but we faced a fever and lots of nausea this morning which frustrates us both. With all of this uncertainty over her healing, we are confronting the reality of treatment, with a surgery scheduled for tomorrow evening to place a port in Allison's chest for chemotherapy and radiation, which begins on May 4th. She turns 7 on May 7th. The significance of this is not lost on me. I feel in many ways that after the surgery, Allison was reborn, especially given her current neediness, like a newborn. This is why we wanted so badly to visit the tree we planted in honor of her birth last Sunday. I feel like that helped us to come full circle to confront her new self and our new reality.

I question how this non verbal and still very weak kid is going to undergo treatment, but I know that she will, because we have no choice. A lot of you have said we are brave, and I guess you could think that, but it is only because there is no other way out of this than to confront it head on. I don't think Allison wants to be called brave. She is doing this because that is the only choice she has.

We have learned the futility of trying to influence this outcome, and I no longer harbor any hopes, like I did last Wednesday on our way to the MRI, that all of this will go away. We are utterly powerless, and have placed our fates in the hands of the very capable people here at Children's. Starting this week, we will be discussing the plan that we face for the next year or so, and it will require every ounce of my strength. But I think I am better prepared to face it, something I was unable to do last week.

I owe a great thank you for your thoughts, emails, cards, presents, and other gestures of kindness over the last eleven days. I don't think there is any way to accurately convey how much your efforts mean to me. In the past when disasters befell anyone I knew I was always uncomfortable telling people how I felt or asking how I could help. I never wanted to overstep boundaries, or insult someone by saying the wrong thing and so I often did not say anything. But you all have proven so warm and caring, and know exactly how to help. I am so touched by everything that you are doing, even those of you I do not know who have taken the time to contact us through this blog. Thank you. I wanted you also to know that I have been reading emails but have been unable to respond to them as yet. Please keep writing, you are helping, even though I remain mute in reply. Like Allison, I guess. When she does begin to speak again, I can't wait to let you all know her first word.

Good night and sweet dreams.


Dianna

Saturday Afternoon

I think this will be a short post today.
Allison continues to make some progress with therapy. She is easily exhausted but her naps seem peaceful.
Found the source of her temp and should be an easy fix. She has a bug in her lungs and is on antibiotics. The fever curve is headed to a swirling toilet where it belongs.
Things are slower in the hospitals on weekends. I am happy for this. I think we need this respite mentally.

Our neighbor Carrie wrote to us this am. She wants Allison to imagine zillions of happy healthy cells working overtime. Working on the healing. Great thought.
Our other friend Beth wrote about Camus, in the depths of winter, finding an invincible summer inside himself. Another great thought. I am trying but this one is harder.

I heard the birds this morning, stayed and listened for a good 10 minutes or so.
Peaceful those birds. Brian

An Extra Thought

I was going to include this in the blog last night but I found out Allison's fever was 102.3 and couldnt focus on this thought.
When we were in the ICU last weekend, i noticed the neurosurgery resident spending a great deal of time in bed 2. My first thought, thank god the resident wasnt spending this much time with Allison. One of the ways i relieve my anxiety is walking. I walked by bed two multiple times on Sunday. An infant, maybe two or three months, was in the bed. I hid behind cover and watched the resident scroll through the CT. She or he had a posterior cranial defect with obvious intracranial damage. Trauma was the cause, from child abuse or whatever i dont and didnt care to know. I became good friends with the ICU fellow, an outstanding doctor. We talked, in general, about pediatric care about the great and sad things they deal with daily.
The conversation drifted to the 2 to 3 month old infant.
Bad enough to see the CT and likely neuro complications but what struck me mostly was the absolute lack of any visitors or family. Nobody for 72 hours.
I cant get that little kid out of my mind. I sure hope she/he recovers but just as importantly finds people, such as we have, to help as their recovery starts.

Another thought and if anyone at PSL or any other hospital is reading this, listen. Hire people who smile. There is nothing like a random person smiling at you just BECAUSE. It gives me this immense satisfaction, if only fleeting, that everything will be ok. I am absolutely in love with the housekeeper, angie, who has the smile, and the soul behind that smile, to make me feel better.
I had a dream last night that Allison said "What are you doing"..............
Brian

Crying

I never new there were so many ways to cry. I never knew there were so many emotions that could make you cry in different ways. I have spent the last 6-7 days exploring and experiencing crying. I cry over what was, what could and should have been, what will happen with the chemo or xrt, will she have lasting complications from this infernal posterior fossa syndrome. There have been many other emotional expressions over the last week but none as primal as crying.
I have also found that crying helps. It helps particularly when you cry in front of friends and family who listen and give sound advice. It helps to cry when you realize an entire neighborhood and family is behind you even though I feel like I am in a black hole with no chance for escape.
Allison has had several fevers today, source unknown currently. They are attempting to chase the source but none found yet. Hopefully a simple glitch to fix in this illness but this rollercoaster doesnt seem to end.
Allison has had a long day with therapy as well. She was a trooper yet again in physical and occupational therapy as well as speech therapy. Some progress but this is indeed a slow march. A meeting with the neuro oncologist laid out a road map for us for the next 12-14 months.
Someone mentioned an ironman in one of their posts; an ironwoman in this case. Winner : ALLISON ANN WINN
Brian

One week after the bombshell

It's hard to believe it has only been one week since we found out about Allison's tumor. It feels like an eternity and we have only just begun. We are getting depleted and feeling every minute of strain. Right now my only arsenal is my ability to soothe Allison. I've sung every lullaby from her infancy at least five times today and they work wonders. It also helps me to relax when I see her face soften into sleep. I also glimpsed a tired smile and a few giggles from her today which gave me enormous hope, but we still have mountains to climb before we get back to that sparkle in her eyes and infectious laugh. She still is not speaking and it kills me not to hear her voice.

TV seems too harsh; memories and stories of school friends and other fun activities still cause some pain. But music is really helping, and if any of you want to burn lullaby music and other soothing CD's that may be your favorites we would really appreciate it. We are still limiting visitors just because the hubbub of the hospital is about all we can handle right now. We are back to that schedule so many of us knew when we had babies--a little activity, a little food, and a little sleep are our timetable all day. Therapy has started and there are angels lurking here that give me something to go on hour by hour. Today two of them swooped in with a backpack loaded to the gills with fun games, a hot pink Leapster, and lots of other crafts that seemed handpicked for Allison. To be the recipient of so much generosity helps a tiny bit to soften the hard blows we have sustained. And Allison did appreciate that both Hanukkah and her birthday arrived on April 11 when I showed her the bounty.

Thanks for staying tuned and for keeping us bolstered. Your kindness and reminders of the wide world outside help keep us afloat. Soon we hope to join it again, when we will live every day to the utmost. For now, please do it for us!! Just do it, whatever it is you want. Life is too precious to waste any minute.

Love,

Dianna

My Take and it Aint Pretty

As you all can imagine, and some you have experienced personally, dealing with childhood cancer is every bit the trauma it appears. This post will im sure reveal some of my unbelievable anger and undeniable feelings of helplessness that this event has incurred. I tell news to patients bluntly and directly, and this post will probably compare
Nothing can prepare a parent for childhood cancer. We think of ourselves, our wives or older relatives, at risk, not 6 year olds. I have told countless patients over the last 15 years of many diagnosis', some good some terrible. The terrible ones have never gotten easier to reveal despite the multiple times i have gone through this "exercise."
During Allison's first mri at PSL, I did an idiotic thing and walked back in the middle of the exam and saw the tumor on the computer screen. I froze, knowing my family's life, and most importantly Allisons life was forever changed. I didnt know what to say to Dianna as I walked back in the mri room. So i lied at first and said the images werent ready yet. After a few more minutes, i knelt down and told her. It really sucks to be a doctor and dad and tell your terrific loving wife your first born has a tumor.
I knew nothing about pediatric tumors and frankly assumed they were incurable, as in many adults. Numb to the point of incoherence would accurately describe my mental state over the next 24 hours.
Fortunately, i subsequently learned that kid tumors are much different than adults. I wont bore you with the details but i read voraciously, when my wife wasnt looking, about pediatric tumors. Their cure rate is dramatically better than adults.

I mentioned previously that i was also worried about a complication from surgery, posterior fossa syndrome. This occurs in approximately 1 in 5 surgeries of this type. Kids are "mute" and some go on to permanent complications with speech and fine motor skills. Speech fortunately always returns between 2-4 weeks but again some have permanent issues.
My next freak out was Sat. afternoon, about 15 hours after surgery.I knew something was wrong as Allison wasnt speaking and had trouble moving her right arm and hand. Once again being a doctor sucked. We are trained to quickly recognize the bad things and my previous reading had forewarned me of this possibility. She has since been diagnosed with this complication. I absolutely, categorically, however, refuse to allow Allison to suffer lifelong issues with this complication. Getting a 3 per one hundred thousand tumor is bad enough, then followed with this one in five complication! I plan to will this one away with all of your karma helping.
Ok i feel better.
I have also learned in the last six days about hospitals and the people they employ. Doctors are a part of the engine but they need talented and caring people around them. I wont forget the mri tech here who remembered allisons stuffed animal name "Bunny" at the second MRI, or the anesthesiologist who gave Allison 4 whole dollars from the tooth fairy because she had to pull one of her loose teeth. Perhaps the most remarkable was a mexican family, working class and ungodly nice, who have an 8 year old with the same tumor as allison. They clearly dont have a lot of money but bought a stuffed animal and balloon for allison. I can honestly say that was the most remarkable, most genuine thing I have ever personally experienced.
In the next few weeks, Di and I will be making some difficult choices about treatment options for Allison. I dont know where we will end up but i do know i truly, deeply, and profoundly appreciate everyones thoughts and hopes for Allison Ann Winn.
Im off to look for the first star of the night.... i bet you can guess what i will be wishing for.........

Tuesday April 10

I'm not quite sure what to say except that progress continues to be slow but Allison is spending more time awake and will start multiple therapies today to get her back on her feet. She slept really well last night, rolled all over the bed, and continues to love popsicles. Now we are back upstairs and not in the ICU so that is good. I feel like we can now concentrate on healing.

It feels like it is going to get worse before it gets better, so keep pulling for us. We still need your positive thoughts and prayers. I told Allison that we'll let you all do the worrying so we can work on getting stronger. Our mantra is Never Give Up.

I read your posts to her this morning and I think they are helping her to remember the normal life we want her to get back to. Thanks for trying to cheer her up, I think it will work once she gets a bit more energy.

Dianna

Emily's Post to Allison

A SPECIAL POST FROM EMILY TO ALLISON
I am sad because you got surgery. I hope you feel better Allison.
When you come back i want to do all of some great stuff with you!
So I cant wait to be home with you!!!!
I would like to be with you forever!
I want to be with you forever so I love you. I love you so much SISSIE
I love you.
Love Emily Ruby Winn
We Love you for goodness sake. I want to be with you when you are feeling better.
from Emily to Allison.

Monday Morning

Di and i are alternating nights in the ICU. This is a very easy, quiet place to sleep, much easier than any other ive seen.
Allison is making progress but slowly. I am afraid she is developing a transient phenomenon called cerebellar mutism, a complication from surgery. She basically isnt speaking. The neurosurgeons arent calling this yet but doctors, including myself, wish for the best and try to will and wish complications away. She is also having some weakness in her right hand and arm. We are all not sure what to make of the weakness. Sometimes things happen we cant explain. It sure pisses me off though when its my own daughter. I have to keep telling myself to calm down and not read the literature... ..........A bit of ativan for allison and triple the dose for me.
I think we are transferring to the floor today.
On the bright side, allison is taking ice chips and a bit of jello. She had her first smile, ear to ear, yesterday when she saw her picture on her website!!!!!!! I read her each and every comment so keep them coming. She is clearly interested and it sure makes di and i feel better. Di and i took a quick break yesterday and ran to our old house on Eudora to look at the tree i planted when she was born. It looked great, tall and strong. I broke off some new buds and they are sitting in water next to allisons bed.
I will let di handle the next post; its clear her posting skills are superior to mine.

Sunday Noon

Hello everyone. It's Dianna here. I just had my first chance to look at the website and I want to tell you that every single wish and prayer is making a huge difference to all of us. We do feel your strength and your support. Thank you. We feel truly blessed to have so many people who care about us.

Allison is recovering very slowly. She is moving around in bed more, nods to our questions, and knows we are here. She discovered her two front teeth are missing today with her tongue and seemed to appreciate that it felt very different. She lost one front tooth on Thursday when she accidentally hit herself in the face with a book. The other one came out during surgery on Friday, and the tooth fairy showed up both nights in the hospital and paid well for such special teeth.

I feel strangely relieved to have the surgery over with and at least a preliminary diagnosis, although we are awaiting final results later this week. I'm trying to get used to the fact that cancer is now part of our family. I know that things are going to get even harder, and am trying to gird myself for whatever is to come. I know that step by step we will get through this, thanks to your love and support.

Emily is asking lots of questions and needs to know what has happened. She has very concrete concerns, such as how, why, what, who, and when. I am hoping that she will feel comfortable talking about this with all of the grownups around her, but you should all know that we are being only honest with our kids as we answer our questions and are not trying to hide anything from them. We are thinking about adding something to this blog about talking to kids about cancer, which you might find helpful should your kids have questions.

That's all for now. Bless you all!

Dianna

Saturday Afternoon

Allison had a tough morning. A lot of vomiting and overall feeling miserable. She continues to be stable however. The staff at Childrens Hospital is truly wonderful and caring.
As the afternoon progressed, she slept a great deal and seemed peaceful. She is beginning to respond to commands now but still not speaking. We think she is making progress however. Pretty remarkable less than a day after undergoing 8 and a 1/2 hours of surgery.
Dianna kicked me out of the hospital room tonight so i am just blogging........ instead of resting.

Saturday April 7 - Post Surgery

The surgery yesterday took 8 1/2 hours. Allison was a total trooper, and the surgeon said there were no complications. The preliminary report is that they were able to remove all of the tumor successfully. They think the type of tumor is a medullablastoma which is fortunately a treatable form of cancer. Until the pathology report comes back (approx. at the end of the week), we won't know the course of treatment she will need to follow. Allison, Dianna, Brian and Bunny spent the night in the ICU, and we think that she will be able to return to her hospital room at some point today. Dianna, Brian and Emily are so thankful for all of your support and prayers. We will keep you updated on Allison's recovery! - Marcy (Dianna's sister)

Friday, April 6th - Surgery

Today, Allison will undergo surgery around noon to remove a tumor from her brain. The procedure is likely to last 4-5 hours. Allison has a team of doctors working with her and providing hourly updates to the family.