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.