Doing Good in Her Name

I just wanted to let you know that Peyton's parents have started a new website in her honor, www.doinggoodinhername.com. Many people have asked over the past 14 months how they can help children like Peyton and their families. Well now, thanks to this website, we all have the opportunity to help. Peyton's parents have started a program to help critically ill children and their families at Connecticut Childrens Medical Center, the same hospital where Peyton spent her life being cared for. Please take a moment to check out the website. Thank you! :)

It's hard to believe that today marks one year since we had to say good-bye to baby Peyton.

How can we possibly sum up the way this past year has changed us? When Peyton left this world, a beautiful piece our hearts left too. That unspeakable sadness remains, and will continue to remain. After all, things should be different. She should be here, with us.

Peyton, we know you are with God and with all of Heaven's other children. And we are trying to focus on what you have taught us through your strength and the sweet time we got to spend with you, hold you, and look into your beautiful eyes. Please continue to watch over your mommy and daddy, and help us all to see the light beyond the clouds and rain. We love you, Peyton Elizabeth- forever and always.

Peyton's First Birthday

On September 4th, a few of Peyton's family and friends gathered at the cemetery to celebrate Peyton's first birthday with a baloon send-off, where we sent our messages to Peyton up into the sky. You may be surprised that I used the word "celebrate". However, that is exactly what we did. This past year has brought with it sadness beyond words. But for that one month that Peyton was with us, she blessed all of our lives in countless ways. She was born on that special day- September 4th- and for four weeks transformed all of our lives with her beauty and her strength. Nothing, not even the heartbreak, can ever change that. Happy birthday, precious Peyton Elizabeth!

Please find below a slideshow (also on Kristin's "Once A Mother" blog, as well as some additional photos and videos from this special day.

Kristin has started a new blog in Peyton's memory. Please visit it at www.onceamother.blogspot.com.

As most of you probably know, Peyton's uncle Mike is shaving his head in 3 days. He is doing so in honor of Peyton, and as part of a St. Baldrick's fundraiser to raise money for childrens cancer research. It is our sincerest hope that, through organizations like St. Baldrick's, there will come a time when no other families have to go through the pain that Peyton's family has had to endure. Please visit Mike's Saint Baldrick's page at www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-327386#

To our wonderful family, friends and the countless supportive strangers who have stumbled upon Peytons journey and this blog,

It goes without saying that this has been the toughest time of our life. Experiencing Peyton's journey, from her entrance into this world to her ascension to the next, has been filled with many emotions. There has been anger, despair, grief but through our darkest moments we have felt overwhelmed by the unbelievable outpouring of comfort, support and love that so many of you have shown to us. Peyton was an incredible little girl and as her mother I often wonder if she is working from above sending you all to surround us with love and support. No one should ever have to go through the loss of a child, it is a crushing inexplicable grief, but through this journey you have all sent us the message that we are not alone. Your support through this trevail has meant more than any words can ever express. Through our tears and grief we have felt your love and your kindness has not gone unnoticed. We just really wanted to take a moment to let you all know the profound impact that your love has had on our entire family.

Regards,
Kristin and Dru

Here is an email written from Kristin to the priest. He ended up using this email word-for-word, as a tribute to Peyton during the funeral:

Father,

Here is the second reading that we have chosen. I believe you had all the other information as far as the first reading, songs, psalm etc. Please let me know if you need anything else before tomorrows service. You had asked if there was anything specific to mention tomorrow and I had some trouble putting it into words but I would really like Peyton's spirit to come across. She went through these fights without complaints, as babys go she was extremely unfussy and always greeted each day with bright eyes and interest in all those around her. She allowed us to love her and hold her, to snuggle with her and cuddle her despite all of her tubes, infections, medications, and discomfort. I have never received such unguarded love in my life as I did from this sweet little baby and I have never experienced such fullness as when I held her skin to skin and watched her turn her head to hear my heartbeat and fall asleep. I know that many people think of her only as a fragile sick little thing but she was so much more than that. She had an incredible strength, wisdom and spirit that came through when she looked into our eyes. With all of the poking and prodding, the surgeries, the pain, the medication she really never complained. As her parents we would watch her go through this fight and we would start to cry because we knew the odds were so stacked against her and she would look at us with an expression that said "whats the big deal" It was as if she was trying to comfort us and say "hey mom and dad why are you so sad, Im Ok, its not so bad, see Im chugging right along, Im still here" That was Peyton being Peyton. Her loss is so much harder because she is really the one that comforted us throughout her sickness. The doctors would give us one terrible report after the other and we would come back to the room, hold her and have hope and faith that she was going to be that 1 percent to make it through. We never ever thought we would lose her so soon. I would really like for all those who never got to meet her in person to know that about her.

Thank you.
Kristin Binder


A Reading from the Letter of St. Paul to the Philippians 2:1-4,14-18
If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others.
Do everything without complaining or arguing, so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe as you hold out the word of life—in order that I may boast on the day of Christ that I did not run or labor for nothing. But even if I am being poured out like a drink offering on the sacrifice and service coming from your faith, I am glad and rejoice with all of you. So you too should be glad and rejoice with me.

Eulogy for Peyton Elizabeth Binder
Monday, October 6, 2008
Saint Patrick's Church, Collinsville

Today we are here to say our farewells to my niece, Peyton Elizabeth. A child of God, whose life here with us was a brief moment when compared to each of ours.


It is so hard at this moment to think of the right words. I could talk about how unjust this is, that this innocent baby should be born with such a terrible disease. I could talk about how unfair it is that Krissy and Dru, two parents with so much love in their hearts should have to endure such a crushing grief and immeasurable pain. I could speak of Peyton's grandparents, aunts, uncles and cousins who all loved her so much and are completely heartbroken. But what I really want to do is tell you about a special little girl, who I had the honor to know, and who was very, very loved....Peyton Elizabeth.


We knew before Peyton's birth that she was going to be one special child, just by looking at her parents. But when my sister showed off the ultrasound pictures taken of Peyton in-utero, these pictures revealed such a laid back personality. I mean, Peyton looked in these pictures like she was on vacation, lounging around in a hammock with her legs crossed, sipping a margarita maybe. And when she was born, it soon became apparent that this was in fact Peyton's true personality. She was the most easy-going baby, who rarely fussed, even when things got tough. She enjoyed being held and taking in all that was around her with her bright, beautiful eyes.


Peyton had such a smart look about her. People, including myself, would say that her eyes and hair looked like Krissy's and her cheeks were all Dru. But the fact of the matter is that she was uniquely Peyton, inside and out. Even though she was only a little over 6 pounds, Peyton had the heart of a 200 pound prize fighter. It has even been said that she had a mean left hook and that Krissy and Dru would watch her practice her boxing stances, using her baby mittens as boxing gloves, getting ready for the next big fight. The truth of it is that Peyton, and her devoted, loving parents Krissy and Dru taught us all how to be brave and stay strong, no matter how good or bad the odds are.


Peyton, along with Krissy and Dru also taught us what it means to love and be loved. Peyton never knew a day without love. Krissy and Dru prayed over her, held her, stroked her head and cheek and gently kissed her forehead each day, virtually living at the hospital. Despite the odds, through their love for Peyton, they never abandoned hope. Kristin and Dru showered her with as much love and affection as two people could humanly give a child. As I said earlier, Peyton was an easy-going baby who liked to be held, but there was a certain look in her eyes that she gave only to her mommy and daddy. She basked in the love they gave to her, and returned that love to them in her eyes. Peyton was surrounded by love from her birth until her death. She was surrounded by love in the operating room when she entered this world. She was surrounded by love when she went to heaven in my sister's arms, with her daddy stroking her head.


And that love extended far beyond the confines of the hospital. Peyton touched the hearts of all who knew her and all who knew of her. In only four weeks, she left a legacy that will live on forever in the hearts of many. She showed us what is really important in life. She taught us to be brave when things get tough, she taught us what it means to love and be loved, and she taught us to forget about the petty things, because life is fragile. People: friends, family and strangers alike all came together to pray for Peyton, and to support Peyton, Krissy and Dru. Family and friends became closer and people who had become estranged from one another broke down the barriers to speak to each other again for the first time. Peyton is, and will always be an important part of our family, and her legacy will go on.


Now I will read you a poem which my sister gave to me this morning. It is a poem from Krissy and Dru to their beloved baby Peyton:


To our sweet infant daughter
who now dwells in our heart
we are aching just to hold you
now that we are apart.

To our sweet baby Peyton
with those eyes of dark blue
for your mommy and daddy
you were a dream come true.

We so loved to hold you
and staring into your eyes
the way you loved us back so strongly
was our life's greatest surprise.

Taken from us so quickly
this we cannot understand
we miss each toe on your footsie
and long to hold your little hand.

Peyton our angel we miss you
we pray you're peaceful at rest
Remember daddy's soft words and cuddle
and how mommy sang and held you at breast.

Even though just a baby
your fight for life would inspire
when we felt so helpless and hopeless
you forged ahead never tired.

This sense of loss unrelenting
long to see your eyes sparkle, that cute face
Remembering how you looked at us knowing
Then left this world in our embrace.

We love you so much sweet angel
you were a life made of our love
We'll always miss you darling Peyton
Please wait for us to meet you up above.

In lieu of flowers, memorial donations in Peyton's name may be made to the Leukemia/Lymphoma Society, 300 Research Parkway, Suite 310, Meriden, CT 06450. For online condolences, where you can light a virtual candle for Peyton, please visit www.vincentfuneralhome.com

The funeral arrangements for baby Peyton have been set and are as follows:

Day: Monday, October 6, 2008

Time: 10:30 am

Place: Saint Patrick's Church
7 Burlington Avenue (Route 179)
Collinsville, CT 06022

Burial to follow at Calvary Cemetery, Collinsville

For a map and directions to Saint Patrick's Church, click here:

http://yellowpages.superpages.com/mapbasedsearch/mapsearch.jsp?C=Saint+Patricks+Church&STYPE=S&L=Collinsville+CT&EG=1&RR=15&LID=2074101791&map.x=212&map.y=125&level=8&lat=041803995&lng=-072927377&POI1lat=041803995&POI1lng=-072927377&POI1name=Saint+Patricks+Church&streetaddress=7+Burlington+Avenue&city=Canton&state=CT&zip=06019&spad=no

My heart breaks for Krissy and Dru as I type these words to let you know that the fight is over. This evening, at a little after 5 pm, we lost baby Peyton, and heaven received an angel. We are so sad for Krissy and Dru, Peyton's incredible, loving parents, and know that no words can take away this grief. Peyton was one special little baby, and will always be loved and always be missed. In only 4 weeks, she taught us all so much, and touched so many lives, near and far. She taught us to treat each day like a precious gift. And she showed us how to love one another and how to come together to help others, whether friends, family or perfect strangers. We love you so much, Peyton.

All we can do now is give Krissy and Dru their space to grieve. And let them know through messages on this blog how much we all love them and that we are all here for them when they are ready. Thank you all for the thoughts, prayers and support that you have offered to Krissy and Dru during this very difficult time.

Peyton had her CT scan yesterday. They found something on her brain. Not sure what it is, but they think it may be a collection of blast (leukemia) cells. The good news is that it is not interfering with her brain function and is in an easy spot, in terms of removal. The doctors think that removing it would be no problem at all, and she would fully recover within 3 days. The problem is that they are still concerned about how Peyton is fighting off the fungal infection. At around 1:30 pm today, she will go into the operating room, where they will debride the areas of infection again and will be able to tell whether or not the infection has spread, and whether or not her body is responding positively to the white blood cell transfusions she has been receiving. They will also check Peyton's bone marrow during the surgery and test it. This will give them a good idea of whether the white blood cell transfusions have been effective. So please continue to pray for little Peyton and for her amazing parents.

Today was a rough day. It seems that the infection has spread to the roof of Peyton's mouth (the palate). Tomorrow, she will have a CT scan to see how far it has spread (whether it is now in the brain or the eye). On Thursday, they will take her into the O.R. and debride the infected tissue. Peyton is getting a white blood cell transfusion tonight, to see if that will help her fight this. We will know by the weekend what the next course of action is. Please continue to pray for Peyton, and for Krissy and Dru, as they are beyond devastated.

Peyton went back into the O.R. today. The surgeon debrided (scraped away) the fungal infection in Peyton's nose and removed some structures within her sinuses that were infected. The surgeon now believes that the infection is neither Mucor nor Candida, but rather Aspergillosis (caused by the mold Aspergillus). This is another type of fungal infection that, while aggressive like Mucor, is much slower-spreading, which is a good thing. The surgeon thinks he was able to remove all of the infected tissue today, but Peyton will be going back into surgery on Thursday to debride the area again, and to make sure that there is no newly infected tissue. Until then, we are waiting for the culture to officially come back, to officially identify the type of infection. We were all hoping it would come back by today, or tomorrow at the latest, but the doctors are now saying that the culture may never come back (as the mold doesn't always grow enough in a petri dish to get a culture). So, I might not have anything new to report between now and Thursday (the next surgery). All Peyton's chemo is on hold, and will continue to be on hold until the infection is resolved. So we just have to pray that the infection resolves quickly, so that Peyton can resume her cancer treatment as soon as possible.

Ok, so today (or tomorrow at the very latest) is when we will find out exactly which infection Peyton has and how far it has spread. There are two possible infections. The infection which the surgeon who operated the other day thinks it is (Mucormycosis), is not good at all (as I had written the other day). The other possibility is Candida, which may look the same in terms of how it affects the body, but it is a lot more responsive to treatment with medications (curable), and therefore would give Peyton much better odds. Please pray that this is what it is. We love you, Peyton. You are so strong. We pray with all our heart that you will get the miracle that you deserve.

Hello. Not much new to report here. Someone from the lab came to see Krissy and Dru today and told them not to give up hope yet. They have started Peyton on a very strong medication to try to treat this infection. In addition, they have been giving Peyton morphine every 1 to 3 hours as needed to keep her comfortable. My sister and Dru were trying to be hopeful today that the medication for the infection will be the miracle drug she needs. This emotional roller coaster is so hard. One minute you're down, the next you're up, and then down again. They won't really know much more until Monday. At that point, all the cultures will have come back so that they will know for sure exactly which infection Peyton has and how far it has spread.

As I write this, my heart is breaking for Krissy, Dru and little Peyton. Peyton went to the O.R. today, and the doctors found that she has a highly-aggressive fungal infection, which basically destroys tissues from the inside. It is in her nostrils, and the doctors fear, also in her eye, brain and possibly lungs. We will know how far the infection has spread on Monday. This infection is fast-acting and highly invasive. Oh my God. I can't make any sense of this. None of us can. It is so unfair. Why does this have to happen to this beautiful, innocent baby? Please pray for Krissy, Dru and Peyton. We are all so incredibly sad for Peyton but so worried for my sister and Dru. No one should have to feel such a crushing grief like this. I am so sorry, but I can't even type anymore.

I just received word that Peyton has taken a turn for the worse. She has developed a serious infection and is being rushed to the OR. Oh my God. Please, everyone...pray for this little girl. She needs a miracle. We (especially Krissy and Dru) are all terrified.

Ok...Update from my sister....They have not taken Peyton into the O.R. yet (3 hours later). It is now almost 3:30 in the afternoon. They are waiting for cultures to come back to determine the type of infection. Peyton has no fever, which is good news...but still will be going into surgery. I guess they just need to know what infection they are dealing with first.

Peyton came out of surgery, and as of 7:30 pm last night, was sleeping and recovering. She got a new line in her leg, which was placed right where her diaper meets her inner thigh. Unfortunately, this makes it a scary area in terms of being prone to infection. However, if her staph clears she can get a new broviac in a few days and take this diaper-area line out. Peyton's voice is hoarse again, from the intubation and they have moved her feeding tube to the other nostril because she developed a "clogged tear duct-type infection" on her right side, which they believe may have been caused by the tube's original placement. Krissy was a litle sad to think that Peyton just had this surgery and in a few days will go back to the OR. But Peyton is one tough cookie and has been putting up an amazing fight to beat this cancer. Krissy and Dru are both so relieved to have made it to day 15 of treatment, and are happy that Peyton has had two whole weeks without cancer cells in the cerebrospinal fluid, despite not having all of her meds. Anyway, last night Krissy and Dru were pretty exhausted. They were still recovering from Wednesday night, when they didn't get home and to bed until after 2am... and were extra exhausted from the stress of her going into surgery again. So hopefully they got a better night's sleep last night.

Oh, and I forgot to add that yesterday, Krissy and Dru found out exactly how rare Peyton's cancer is. While infant ALL is one in 5 million, there is only one other baby in the United States who was diagnosed with this cancer at birth and is going through the same treatment protocol as Peyton. This other baby is on the West coast somewhere and is about 3 weeks older than Peyton. Peyton's team of doctors has been in touch with the other baby's doctors, and they have been using each other as a valuable resource, to bounce ideas off of, try new things, etc. I wish there were some way that Krissy and Dru could be in contact with the other family, and Krissy and Dru wish this too....but, unfortunately I don't think that privacy laws allow this. Maybe that other family will stumble upon this blog....?

Hi everyone. I was just on the phone with Krissy. Peyton is in the OR. The doctors decided that they cannot salvage the Broviac line, so it has to come out. Will update later.