Chronicles of Marnia

September is Childhood cancer Awareness Month. I'll be posting about a child we met through my daughter Peyton's journey through cancer from 2003-2004.

I also dedicate this series to my brave little fighter Peyton, who this month, has reached the milestone of 5 years as cancer-free. In the cancer world, making it to 5 years is a near-guarantee her original cancer won't come back. But the ugly secret with childhood cancer is that secondary cancers often come back, sometimes as soon as 10 years from the original diagnosis. Ironically, these secondary cancers are caused by exposure to chemotherapy and radiation used to stop the original cancer.

As you read about the kids I'll profile, please pray for less invasive cures as research gets better and better. Please pray for the funding of the research, and please pray for the families of the kids effected by the devastation cancer can bring.

So blogger and I aren't getting along right now. Scheduled posts aren't going up, some are missing...blah blah blah. So until I get it together, I propose we take it old school.

This is a post I wrote on Peyton's Caringbridge page as she was about to finish up treatment. I'm posting this re-run because I'm still thankful to all I mention in it and for all they did for us. You know who you are, and you know I love you and am grateful for you...to the moon and back!


Thursday July 15, 2004

When peace like a river, attendeth my way;
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

At 7:00 pm on December 26, 2003, my 2 daughters, my mom, my sister, Dane and I were outside playing on the playground at Children's Medical Center of Dallas. We were waiting to be seen in the ER for some relatively minor blood in Peyton's urine. Earlier in the day, our doctor felt a small lump on Peyton's right kidney and felt it was likely a cyst, but we should have it looked at just in case. By 7:00 am, December 27, 2003, a Urologist was placing CT films on a light board and telling us we were looking at a large and aggressive cancerous tumor.

It has been an amazing 6 months and 18 days. Peyton has responded well to treatment. There were many vicious chemo side effects that could have come our way, but they didn't. For that we can only thank our loving God for hearing our pleas and answering them so faithfully. Some statistics: Peyton endured 8 large rounds of chemo, plus weekly chemo in the clinic, 2 blood transfusions, 2 fever spikes due to low counts, 2 treatment delays due to low counts, 2 "bonus" hospital stays due to low counts, 80 GCSF shots to elevate her blood counts, 2 finger pokes per week to check her blood count level, 3 CT Scans, 2 MRI's, 4 ultrasounds, 7 chest and abdomen x-rays, a bone scan, a bone marrow aspiration, major surgery to remove her right kidney and the tumor that was destroying it, 6 days of radiation--and now, we are done. Our doctors don't know the full scope of what long term side effects Peyton might have. Hearing loss, fertility issues, delayed growth
development and attention disorders are real possibilities, but we'll deal with that if it comes. There are no words to suffice what gratitude, relief, and praise we have for our friend and savior, Jesus, for leading us through these last months with the promise of healing and mercy.

On that terrible day of diagnosis, I begged God for peace to help our family through whatever we were about to go through. And peace, indeed, He gave us. Dane and I always had the understanding that we were to learn something from God through Peyton's cancer, and we did. God grew us spiritually, as a couple, and as better parents. He gave us many opportunities to minister to other families, and even staff and many others ministered to us as well. We were blessed then, and continue to be now because of the special people who are now forever part of our lives.

God brought 5 very special families into our lives, and although we wish cancer wasn't what we all had in common, we are nevertheless grateful for the love that is
coming out of something so scary. Marcie, Wally and Logan; we are so grateful to know you and we love you all so much. Your trust in Jesus to heal Logan (and He did!) was inspiring to us and your friendship to us, and your love and concern for Peyton has touched us in ways that only other cancer parents would understand. We marvel at how God worked to place us in the same place at the same time and then have us strike up a conversation that led us through months of emails and visits so we could love and support each other. Monique, Barry, Griffin and Blake; you are all so special to us because God moved you all the way to Texas so we could meet you and be amazed at your family, your strength and your miraculous, fighter of a 6 year old. You have been traveling this road a lot longer than any of us, and yet you are so positive and focused. Griffin is a walking, talking testimony to the power
of God over disease and we are so blessed you show that to us everytime we get together. We love you all. Daryl, Sherrie, Chelsea, Heather, Kristina, Colton, and precious little Weston; Your family coming into our lives was a direct result of prayer. The first months of Peyton's diagnosis was so lonely for us at times. We were constantly in clinic, at radiation, or in the hospital and we rarely left the house because Peyton felt so lousy. I specifically asked God to lead me to someone who understood what it was like to be the mother of a cancer kid, and then I met Sherrie. As an added measure to ensure we would meet, God made sure that I had a friend who happened to know a friend of Sherrie's.
Some might say, "it's a small world", but it's not a small world, He's a big God...Weston was diagnosed within days of Peyton, Weston and Peyton have the same primary Oncologist, and therefore have the same clinic days. In 6 months and 18 days, Peyton has only been in the hospital once when Sherrie and Weston weren't there too. Sherrie and I had decided that if we have to be in the hospital, at least we're in together and we can hang out or hang on, depending on the reason for the stay. In such a short period of time, Sherrie has become one of the most important people in my life and at any given time, she knows what I'm feeling when I can't explain to anyone else, and vice versa. So many set backs in Weston's recovery, and yet your faith never wavers. We know you and Daryl get scared and discouraged, but yourally everytime. Your faith and patience stun us at times. Continue to give God control, keep loving each other and your wonderful kids, and wait in expectation of the miracle God will show you. We love all of you very much.

Mary and Elisha...your faith grew my faith. As iron sharpens iron. Little Elisha, you made us laugh and want to be brave. How do we thank you for that little man?

And Kelly, Britney and my sweet angel Courtney. We've said this before Court, but I would also walk through cancer again just so I could know you and love you. You three were my rock. No words will ever be enough.

We would never have made it through this journey as well were it not for the love and help of our families and our friends. Many of you put your lives on hold while you helped us with whatever need we had. To our parents, thank you for loving our girls so much. Thank you for coming to the hospital every time we were in, calling everyday to check on us, watching the girls when Dane and I needed some time to go out and enjoy each other, keeping and entertaining Lindsay while we were in for hospital stays, and most importantly, praying for us and loving us and the girls in a way no other human beings could. How hard it must have been for you to not only watch your granddaughters hurt and struggle, but to watch your children hurt and struggle as well. But you set those feelings aside to help us when we needed it most.
Stephanie, you have both impressed and amazed me through these last months. You are more than just a sister to me,you are my closest friend. Dane and I depended on you for so much, and you always came through. We love you very much. There isn't anything we can do to repay all of you except to celebrate defeat of Peyton's cancer with you. Please know that this experience was made much better because of all of you.

Dane and I want to thank Drs. Bob Felty and Chad Coleman. They are our family doctors and have been so wonderful to us, even before Peyton was sick. When Peyton presented with blood in her urine, it was a Sunday, so I called a local emergency room. The nurse I spoke with told me blood in the urine wasn't a big deal and it was likely a bladder infection or UTI. When I called Dr. Coleman on Monday morning, he wanted to see Peyton right away. He was calm, but told us that bloody urine in a child is never "no big deal". He drew blood, and bless him, he used Emla cream to numb Peyton's arm before sticking her because "No child should have to feel a needle stick this close to Christmas", and said we should have some results by the next day or two when the cultures would have time to grow or not. Dr. Coleman knew he would be out the next 2 days due to the Christmas holidays, but promised he would keep in contact with the lab and with us. The bleeding was worse the day after Christmas, so we went back to the doctor. Dr. Felty knew about Peyton's situation and had already consulted with the lab and Dr. Coleman for results. The blood failed to grow a culture, so we knew it wasn't an infection we were looking for. Dr. Felty said that Peyton's symptoms could mean a cyst, so he felt around on her belly and back, and detected what we now know to be the tumor. He sent us to Children's right away and called ahead to inform the Urologist what Peyton's symptoms were and to let her know we were waiting for admittance through the ER. Both Dr. Felty and Dr. Coleman have continued to follow Peyton throughout these last months. Were it not for them and their dilligence to find out what was wrong, we could have lost precious time in finding the culprit. We could have been subjected to numerous, useless tests in the ER had you not honed in on an area of concern. I have lost count of how many horror stories I have heard from other parents about how their children were misdiagnosed for weeks or months. Not us. God blessed us with these two godly men who cared enough for Peyton to keep going until they were sure of her diagnosis--and it was Christmas. How easy it would have been to put us off until after the holidays. They are dads too, and I know they thought like dads as they helped us get to the bottom of Peyton's symptoms. We know God blesses you both because you are both good Christian men, but please know we pray for your continued blessings for what you have done for us. As a post-script, there are two neat coincidences with these two doctors. Peyton had a team for Relay for Life. The Chairpersons for the event were Jimmy and Shannon Beaudoin. Shannon is Dr. Felty's nurse. Peyton has a Child Life Specialist at Children's. Her name is Ashleigh. Ashleigh will be marrying Dr. Coleman's brother later this year. As I said in the last post, it's not a small world, He's a big God.

BIG thank you's to Peyton's team of Oncologists: Dr. Victor Aquino (primary Oncologist), Dr. Dan Bowers, Dr. Jonathan Wickiser, Dr. LaJuan Jones, Dr. Scott Cameron, Dr. Patrick Leavey, Dr. Andy Collier, and Dr. Matther Porteus. There are many wonderful Oncologists at Children' and these were the doctors we had the most contact with. Throught the last several months, we were blessed by the presence of these fine men and women and their support of what Peyton was going through and what we were up against. Thank you for not only sharing your knowledge of cancer and what it can and cannot do, but also for your unwavering confidence in the treatment course that was best for Peyton. This was an incredibly rare cancer, and you never batted an eye at how it was beatable and treatable.

Also, thank you to the comforting presence of the nurses at CCBD (clinic) and the AWESOME 10th floor nurses. To Joe Don Cavender (RN PNP)and Julie Steele (RN PNP)--many hospital stays and clinic days, you gave us such comfort and peace with your assurance that Peyton was tolerating treatment so well. You spent above-and-beyond-the-call-of-duty time with us and we are so grateful. (Another cool coincidence??--Joe Don and Dane used to play football against each other in high school!!) Andrea Windich (RN CPON)--our friend, and the world's greatest Oncology Nurse, what would we have done without you? You are so great to Peyton. You were generous with your love and kisses to Peyton and with sharing your faith and love of Jesus, and your friendship with Dane and I. To our beloved nurses on the 10th floor--you are the reason we survived in-patient treatment! You made us all feel comfortable and relaxed about treatment. You are the reason Peyton actually looked forward to hospital stays. We love you Tami, Mary, Paige, Phyllis, Stacy, Lizzie, Amy, Amanda, Amanda, Alexis, Heather, Mel, Jessica, Donna Donuts, Ignacio, Allen, Cindy, and Karley. Thank you to the wonderful housekeeping staff. You not only went to great lengths to take care of us and our rooms, but you never failed to ask how we were and how Peyton's treatment was going. Thank you to Lucy for your smiling face and kindness everytime we checked in upstairs. Thank you to our awesome lab team (clinic) for making the finger pokes as quick and painless as possible. Thank you to Karen for remembering us each clinic check-in and giving Peyton a hello hug everytime you saw her. Thank you to Torri for taking such good care of Peyton while in triage. You always let Peyton help you with the blood pressure cuff and scale and made her feel part of the process. Thank you to Kristin and Shawnna. These special, special ladies are Peyton's Child Life Specialists. Shawnna taught Peyton invaluable breathing techniques and taught her to keep herself calm during scary times (like port accessing and de-accessing, breathing treatments and finger pokes). These skills were a life-saver. Your help meant the difference between a rough, scary six months, or a smooth sailing six months like we had. Thank you for your wisdom and friendship. Kristin, thank you for making clinic something we all actually looked forward to. You let Peyton be your helper when it came time to clean up, and being a helper is Peyton's favorite thing to do. Thank you for your friendship and your skills with with children. You helped us pass many a long day in clinic. Thank you both for answering the call to work with children. I imagine your job can be so hard because it's not something you leave at the door when you go home, but you told me the good far outweigh the bad, and we are all blessed to have you and benefit from your gifts of compassion and love.


To our angels in blue; thank you to the wonderful men and women of the Dallas Police Department for rallying together for the sake of a little girl. Thank you to Sally and Dave who were so understanding and flexible about Dane's schedule so he could be with his family when we needed him the most. Thank you to the officers who came to the hospital to not only cheer up Peyton, but came bearing gifts for all the other patients in the HemOnc clinic and HemOnc 10th floor. Thank you to the Dallas Police Association, Wish Upon a Star and all the kind souls who donated money to Peyton's chili cook-off so that money for medical bills would be one less thing for us to worry about. Thank you to the Youth Operations for the bake sale and for being the first to show us that the department wasn't going to let us go down this road alone. So many of you are like family to us, and how blessed we are to have you in our lives.

Thank you, Lindsay for staying brave during this time. You had to sacrifice a lot while daddy and I were away so much and taking care of Peyton. While we had some tough times, you have kept your focus on Jesus and knew that someday this would be over. This was a lot to deal with, but you did it. You are a super big sister and daughter. We love you very much. Dane, there is nobody else that I could have gone through this with. I have loved you since I was a kid, and you have never let me down. Now that we are on the other side of this, I can see cleary that you and I are extensions of each other. You knew just what to say and do to comfort me or make me laugh when we were having the bad days. I love you. Peyton, you are so brave and you never questioned why you had to deal with cancer and chemo. What a testimony you have to share with the world, and you are only 4! God has such great things planned for you. In 6 short months, we have watched you inspire and amaze all kinds of people. We are so blessed God has entrusted you and your sister to us.

I've saved the best for last. To God, who is able to do immeasurably more than we can ask or imagine...we praise You and thank You and love You so much for Your presence, mercy, and love. Thank You for hearing our cries and prayers and answering them in ways we couldn't have imagined. Thank You for sending Your Son to die so we could live. Thank You for the righteous and loving
people we have in our lives and for the new ones you continue to bring into our lives. Who are we that you should pour out blessing after blessing and forgive us of our stumbles and sins? Thank You for knowing how it feels to see your child suffer and therefore showing us how to make it for Your glory. Thank You for loving our girls more than we ever could and for being in complete control of Peyton's healing and peace. To our Lord and Savior, Jesus Christ...You told us on that that darkest moment after Peyton's surgery, "Do not be afraid", and then released Your peace into us so we wouldn't be.
Of all the blessings you've given us in these months, that one is the most precious and we are so grateful. Thank you for drawing us nearer to you. Thank You for knowing that although we would have to walk through the darkness for a while, you would lead the way to the other side. Thank you for Your very real and very strong presence. Thank You for being the center of our family, our lives, and for dying for us so that we have the assurance that we will one day be taken from this place where people suffer, hurt, fear, rage, and have no hope, to live with you for eternity. We love you for who You are and what You do
for Your children.

We go to clinic next week for counts. I'll update more then...May the peace and love that only comes from God be with everyone who sees this page.

Marni


Childhood cancer research is woefully underfunded in comparison to adult cancers. But there are research hospitals who are making huge strides in curing cancer, and in the meantime, trying to make the treatment safer for the kids who endure it. Personally, my family and I help fund 3 organizations who are making a real difference in fighting childhood cancer. If you want to help, go to:

Curesearch,
St Jude Research Hospital,
Children's cancer Fund and Children's Medical Center of Dallas


Sometimes, all you can do is make a child smile to help them forget their illness or give families the support they need. We're big fans of these organizations as well:

Make A Wish, Habitat for Hope and Candlelighters Childhood cancer Foundation

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