Hi all – A year ago this morning, our lives began to change forever. Sally had been sick since the day before with a fever of 103, Nicole and I took turns staying up all night with her. By morning, she was limp and pale as a ghost. We agreed that Nicole would head into work, and I would take her to the ER as our doctor didn’t have hours that morning. We figured she had the flu or a virus, and they’d want to hydrate her and probably release us after a couple hours. So I sent this email to my coworkers:
“All – Sally has had a 103 temp for 24 hrs, was up all night and is limp and pale with no color in her lips. I’m going to be taking her to the ER in a bit so likely won’t be in.”
We arrived and were seen quite quickly by ER standards, I noticed the check-in staff gave her a long look while I signed us in, which must have prompted us being seen right away. They quickly moved to get an IV in her and take blood, both very painful for Sally. Shortly after, we were told that her blood counts were dangerously low and that Sally would need a blood transfusion ASAP. It was also the first time the word “Leukemia” was brought up, the doctor saying it was something they had to rule out.
I took this photo of Sally in I in the ER to send to Nicole. You can see how pale her skin and lips are.
ER staff had me take Sally’s clothes off to try and cool down her fever.
We were admitted, expecting only to be there overnight. We were told that a blood transfusion would perk Sally up and they just wanted to keep her to be safe. Her IV had come out, so they needed to replace it, causing Sally even more pain. After the transfusion, Sally did not improve. This was the first moment we knew something was wrong. Over the next two days, Sally’s condition worsened, although the doctors were confident it wasn’t Leukemia. We both stayed at the hospital, vowing not to leave her side.
This is the IV they had to put in down in the ER, which kept falling out. They way it was set up, she couldn’t suck her thumb, which she would never do again.
Coworkers sent her a bear, you can see how limp and miserable she is.
Exhausted from all of the visitors and tests trying to figure out what she has.
You can see how swollen she is from the IV fluids and her kidneys not functioning.
Where we slept those first few days.
Finally on Friday morning, the 14th, the doctors and nurses both asked if Nicole would be joining us as she had decided go to work for a few hours. I told them she wouldn’t be back for awhile. It was then that the doctor came in with the residents, and told me that Sally had Leukemia. I broke down when it all hit me, then had to call Nicole to tell her the news, unable to hold it together. We had to get her started on chemo ASAP, and her doctors were recommending that we take her to Columbia Hospital. However, Nicole and I both knew the reputation for Memorial Sloan Kettering, so decided to go there instead knowing they were the best. It was all very rushed, we had only hours to make a life saving decision for our 9 month old girl. While deciding, we spoke to doctors from both Columbia and MSK. When the doctor from MSK called and said his name was Thomas, like our son, we took it as a sign. He also said “Other hospitals treat tons of different things, our hospital only treats cancer.” That reinforced our decision. In the meantime, Sally was transferred to the ICU because her kidneys weren’t functioning. We arranged for an ambulance to take Sally and Nicole to MSK and I followed in the car. Recently, Nicole bumped into the nurse who was with us in the ICU at Mac’s funeral, whom she also knew. She actually remembered us from those brief hours we spent with her.
When we were arrived at MSK, we were taken up to the Pediatric Observation Unit or POU (pronounced poo). Sally needed a new IV placed, however the nurses hearing about the last hospital’s struggles getting IVs into her called in a senior nurse that was apparently the best at it. She calmly did it in one try and we never had another issue. Nicole often says that this simple act calmed her and told her we had come to the right hospital. The nurses in the POU still claim Sally as their POU baby, as she was with them first.
Having just arrived at Memorial Sloan Kettering, we didn’t know if she was going to survive.
Nicole and her Sweet Sally.
The days after that were a whirlwind, especially the first few not knowing if Sally would survive. Nicole and I were terrified and exhausted, barely able to get any sleep. I remember dancing with Sally to music in the room, knowing I may not have an opportunity to ever do it again. I couldn’t sing my usual “You are My Sunshine” to her, unable to get out that last line “Don’t take my sunshine away” without breaking down. To this day I can’t say them, I replace the line with other words. Nicole wrote this moving post in the first days, explaining her feelings. We know now that our doctors were extremely worried about Sally surviving those first few days, which they hid well from us.
Her face says it all.
They installed Sally’s central line for chemo in her back, unusual as they are typically installed in the front. The surgeon we had was the only doctor known to do this, which looking back now turned out to be for the best hearing about challenges other kids have with pulling on it. She was given her first dose of chemo, and at the same time had her first marrow sample taken at MSK. We were given a stack of papers outlining all the chemo she would receive and the potential side effects. However, in the coming days doctors were unable to find the Leukemia in her blood or marrow. Her symptoms improved and she was released, doctors thinking she had a rare virus. Nicole and I were not convinced, the original test was accurate 99% of the time. We wanted her to be the 1%, but both of us could sense that this was not over. Sure enough, doctors would see signs of the Leukemia again in a future test, and finally full blown Leukemia almost a month later.
We wrestle with what day to declare that Sally’s journey began. We most often say that it began on July 15th at 10 months old, which is when her treatment began. However, we also know that the Leukemia was formed inside of her on June 12th, a year ago today just after she had turned 9 months. Doctors have said she had Leukemia all along this process, so we know she certainly had it as early as 8 months of age, especially with some random fevers she had in the weeks leading up to this.
What today signifies is that a year ago, our lives would cease to be “normal”. Our lives forever changed in those first hours, our ignorance to the world of pediatric cancer was over and we would together be in a fight against a cancer that less that half the kids diagnosed with survive, many of those survivors having lasting effects. Even if we get Sally through the next year+ of treatment, the coming years will likely be dedicated to therapy in catching her skills up, reintroducing foods, watching for post-chemo related side effects, and most of all worrying about relapse or another form of cancer forming, both high risk with Sally’s Infant MLL ALL Leukemia diagnosis. Scarlett’s mommy told us yesterday that although they are post treatment with her, life is still not “normal” and won’t be.
I sit here with tears as I write this, it has been such a long journey already. We’re exhausted. Nicole says the year flew by but the individual days were long and rough. We have not yet reached the halfway point, so still have a long road ahead. We couldn’t have done this or continue to do it without the amazing support of friends and family out there, both new and old. The fundraisers, the meal train, local restaurants sending us meals since we can rarely get out as a family, friends and family helping with the boys and errands when Sally is admitted, emails and posts of support, those who have donated blood or shaved/cut their hair, our employers (who are also fortunately our friends) being understanding and compassionate, strangers offering support on the street. All of these acts, large and small, keep us going and allow Nicole and I to be strong for Sally and the boys. We often say how behind we are on sending out thank yous. Please know that everything done and said means the world to us, and we are thankful for each and every piece of support we receive, even if we don’t get a chance to say it. You all have been our emotional rock and we are forever in your debt.
Please keep Sally in your thoughts and prayers.
Matt
Matt, you seriously bring me to tears every time you write on here. Do not, I repeat, do not spend one minute or I second thinking about writing thank you notes. We all are here for you, Nicole, Sally snd the boys! Spend your time with them.. We love you! Sally is strong and if has proved one thing besides capturing the hearts of thousands, she is one hell of a fighter ( I think she got that from both you and Nicole). We love you guys! Love you all, the Wagners
Thinking of you guys and keeping Sally in my thoughts.
Dear Matt and Nicole,
What can I say beyond how much I love , respect and remain “with” you during this arduous and loving journey you are on these days. How can I help you and your three children? I pray for and about all five of you. I realize, now, that you have great confidence in the hospital staff. I am so pleased that Cindy can be there for you and that Jeff keeps well informed no matter where he might be…All of your siblings are constantly praying with/for you. Dad and I wish God’s Peace and Healing for all five of you since you have so many issues that you “carry” in your heart. May our Lord continue to sustain you in the months and years to come…Love, Mom
I am reading this with tears running down my cheeks. One year is past, you have both stayed strong, continue that and know that prayers, good thoughts and much love is constantly being sent to the Kabel family. Continue to stay strong and remember to count your rainbows not your storms. Sally is a beauty.
Matt, I know that you don’t personally know me, but, I have known Nicole since she was born, being good friends with her parents. I thank you for keeping us informed of her progress as I pray for her daily. I just feel in my heart that she will get well. I long to see her with her blond hair in pig tails running and playing. I pray that day will be soon.. Please give Nicole my love.
You don’t ever have to thanks us brother. I just appreciate you and Nicole sharing your story. You have to have an outlet for allthe pain, tears, anguish and anger. I know first-hand how it all feels. When my son was diagnosed with mixed lineage leukemia, I felt all those same emotions. That’s all normal for parents like us and you only know if you lived it. As I type this message to you, I get emotional too because I read your posts and see how you and your wife are following down the same path as us. You appreciate the good days, hate the bad days and hope for better days. No matter how good thing are you must worry until Sweet Sally’s oncologist tells you she cured and a survivor. That is how it works. Usually that day is 5 years post-chemo remission or 2 years post-bone marrow transplant remission. Until then we keep fighting the fight for our children and one day we will be able to sitback, breathe and share the stories of these experiences that made us stronger. I hope all is well with you and your family.
Hello Matt,
I saw your story on a friend’s FB page and I knew I had to read the story for myself. I just wanted to share a bit of my story. My nephew, my sister’s son, at the same age as your sweet Sally was also diagnosed with Leukemia. My sister took her son to Memorial Sloan Kettering, his Doctor was Dr.Boulad, besides being an excellent doctor, he is also a wonderful person. Know that your daughter is in great hands, words can’t describe how incredible the team at MSK are. My nephew had treatment at MSK for his Leukemia, and after a short couple of months, my nephew went into remission. Long story short, my nephew is 25 years old today and cancer free! He survived cancer by the grace of God but also, God touching the hands of those incredible doctors at MSK. Have faith and believe that your daughter will get through this, and beat cancer too!…
My prayers to your family and beautiful baby girl.
<3
Please know that there are many people who you have never met who will carry your little Sally in their hearts. I am one of them. God Bless you and your sweet little girl… And the rest of your family. I pray for a happily ever after for all of you
Will pray for your baby. May God bless you with his presence.
Matt, we thank you and Nicole for allowing us to be part of your life. I’m so glad you moved to Bay Ridge where, with God’s help, you will have many dances with your Sally Sunshine. Your family is a constant reminder to all of us of how very small all our problems are.
I love you guys! And feel every word written in my heart. I wish I could change it all and take away the pain, but since I can’t, I vow to fight alongside of you every day for our children. God be with you on this crazy journey! With Faith, Love and Much Hope for a Cure, Dena
Hi Matt and Nicole, I stumbled across your post about your precious little one and your battle. As a father of two, I was moved by your post. Please let us know if there is anything that we can do to assist you on this journey.
Michael Laramee
Co-Founder of http://www.mealTrain.com
Sally’s early story brings back so many emotions for me as my own daughter’s journey at MSK. The nurses in the POU are top notch as they too nailed Kristen’s IV first try (when the other hospital could not and had her in so much pain) as she was medically transported there from another hospital. You have Sally in the best hands of doctors and nurses at MSK. My family and I will continue to pray for your sweet Sally. She is a true beauty. Lifting up Sally in prayer to Padre Pio for healing. Pray, Hope and Don’t Worry.
Love,
The O’Halloran family
Dearohalloran.prYing everyday for her and family.What cani due to help.?you can post your info rom my face book.
Dear Kabel Family,
I had tears in my eyes reading your post. We do not know each other, but I have been following Sally’s story for some time now. I want you to know that there is not a day that goes by that I do not think of her and pray for all of you. You have opened my eyes and made me realize what is important in life. Thank you Kabel Family. Love and prayers always to you.
May god bless your family , my thoughts and prayers go out to Sally and your family.
God bless you and your family. This should never happen to anyone. With love and prayers for you and your beautiful daughter.