What Happened?

Duffy’s blog entry:

Please excuse the thousands of grammatical errors~ it is 1 am and I am not worried about comma splices or run on sentences, lol. I also tell stories in way too much detail.

We have been so busy trying to be by Kaylee’s side that we haven’t had a chance to answer the biggest question; how did this happen? How did you end up at the hospital? So here goes.

Kaylee had been showing signs of teething for about a week 1/2- two weeks until I started to notice she was getting very needy (always wanting me to hold her, throwing a tantrum when I didn’t, waking up multiple times of the night crying, not having much appetite….) So I did what we all do…I googled everything about teething and saw that everything she was doing was “normal” for teething, and would hopefully get better soon. I did everything I could to make her “teething” easier. On recent play dates I mentioned to friends that see her quite often “Does Kaylee look weird to you? She just seems ‘off’ lately…and I don’t know what it is other than teething…and I don’t want to be that…mom that worries for no reason…”

Finally, on Thursday Aug 1st, I called my husband and said “It’s a bad day…she is totally crying about nothing, except when I hold her…she isn’t eating much either. Something is wrong and I don’t think it’s just teething honey. Maybe she has an ear infection?” He said “she is probably tired, but call the Dr.” I talked to my mother in law and mother and both said “Duff, make a dr. appt just to feel better.” So I did. I made a sick appt for 2:15.

During the Dr. visit, Dr. Hill mentioned Kaylee’s bruises (I’m thinking; uh she is a toddler and running into everything) and her super pale complexion (I am mentally patting myself on the back at this point at what a good sunblock warrior I have been for my daughter (so dumb, Duffy.) and then she said she wanted to do a blood test to see if Kaylee was Anemic. (wait, what?) I looked at the Dr. and knew that something else was bothering her but I didn’t question it. The Dr. came back after a few minutes of looking at K’s blood and said. “Ok, Kaylee is Anemic.” my response: Ohhh.. Ok so that explains the random bruising and her paleness?” (I started to relax for a minute b/c she had just confirmed I wasn’t paranoid about worrying) but there was more…. Our sweet Dr. looked like she was going to cry so I said “Oh no…Oh God…What….? Tell me….don’t sugarcoat whatever you need to say… what is it?” She took a deep breath and said ” I looked at Kaylee’s blood on a slide, and her white blood cells are off the charts, her red blood cells & platelets are way down…I need to send you to Scottish Rite Children’s Hospital because I need the hematologist to confirm if she has a really bad virus or maybe..possibly even Leukemia.” (I couldn’t breathe…I felt like someone had just punched me in the stomach and the flood of tears came. My Brain was screaming WHAT?!!) She said “Do you want your husband to go with you?” I couldn’t talk between my sobs (other than nodding yes) so she called Chris at work, explained the situation and to meet me at the Pediatricians office. He arrived, she filled him in and we headed to Scottish Rite. (I prayed the whole way there.) We were ushered immediately into a Triage room past the other Emergency room patients at Scottish Rite Children’s Hospital. We were introduced to the Hematologist and the Oncologist. Kaylee had to give more blood (screaming crying while I held her and tried to comfort her for being poked so many times) Both Dr.’s said it could take an hour to get results back, so we waited….only 10 minutes later the Oncologist came back in and said “I am so sorry to tell you this, but your daughter has Leukemia. There are different types so it may take a bit longer to find out what type it is, but I believe it is ALL Leukemia which has the highest cure rate….. ( at this point my husband, my mother in law, sister in law, and I are crying &I pretty much don’t remember much what he said after that…I was trying to process,,,,, my sweet baby girl…(asleep on my lap at this point) my little 17 month old, full of spunk, sass, and sweetness, lover of playground slides, and Elmo..has cancer?!!! How and Why did this happen? At one point later that day I know I asked “What if I had gone to the Dr a week earlier? The Dr said, it doesn’t matter, she would have gotten more and more lethargic making her heart work harder and you would have noticed…a week…two weeks, would not have made this diagnosis different. She either has Leukemia or she doesn’t. It isn’t like other cancers where there are stages, and it is not known how all kids get Leukemia.” Later, I remember when I was being wheeled to our hospital room (bc K was asleep on my lap) I was quietly sobbing when we came thru the doors of our section and seeing ‘AFLAC Cancer and Blood Disorder Center.” Pictures of smiling bald babies hung in the hallways and kids with IV’s walking by us…. I tried so hard not to cry in front of Kaylee, but found myself asking the Dr questions and having to take a second to breathe to stop the tears. Just being real here, I was not some strong, fearless mom at this point. I was a crumbling mess trying to hold it together while my sister in law prayed over us.

We didn’t tell anyone but immediate family for the next few hours, and only posted to Facebook that we needed prayers for blood tests that Kaylee was going through (because they wouldn’t know for sure it was ALL Leukemia until the morning.) So, the original Dr appt was at 2;15, we were told she had cancer by 5pm and were wheeled to her room in the Cancer Center by 6ish, so our life completely changed in a matter of hours and we had no idea how to process it all.

I think it was when Chris’s Uncle and a friend of mine said the same words that night that put the fire back in my heart, that helped me quit crying & be the parents our daughter needs us to be during this battle while trusting God the entire way. Both of them said something along these lines ” Do not for one second feel sorry for yourself, or for Kaylee or for Chris. It is a waste of energy that can be spent fighting for your daughter, praying for your daughter and encouraging your daughter. God has chosen you three to lean on Him during this trial and to trust His purpose. You job is to love your daughter, and to teach her to fight, and pray…Pray everyday for the Dr’s, the nurses, for her and know that God will heal her, because He can!

So that is what we are doing. We are praying. We are fighting for her recovery and believing that she WILL beat this! We will be blogging as much as possible with pictures and updates on how she is doing, what she is doing, or how we are doing, There might be days where we need your encouragement and prayer (well, we always need your prayers.) So please FIGHT WITH US, PRAY WITH/FOR US, and share Kaylee’s story because there is NO such thing as too much prayer! Proverbs 3:5-6.

43 thoughts on “What Happened?

  1. Duffy – my daughter, Kelly, went to school with you. She shared Kaylee’s story with me. Please know that I will be praying for your sweet baby, for you and Chris, for her grandparents and all your family and friends that love her and you. I’m asking all the prayer warriors that I know to keep you in their prayers. God is the Great Healer and Comforter. May He give you strength, courage and peace at this time and in the days to come. God bless Kaylee and you all.

  2. Duffy, you are such a strong, amazing mommy (not a dumb mommy)! By trusting your mommy instinct, you went to the doctor and are now able to get Kaylee the proper care that she needs right now! You have a beautiful child and she IS going to beat this! I pray that she stays healthy during this journey and that the doctors continue to give you the best medical care. You are at an AMAZING hospital. I use to work for CHOA and truly have seen what the power of prayer and an amazing hospital with incredible doctors, staff and donations can do for a family.

    Thank you for letting us all in on your journey! I think about your sweet girl frequently!

    Always on my mind!


  3. I am friends with Dana LaBlanc and read your story. Kaylee and your family will continue to be in my heart and prays. May God bless you with miracles everyday.
    Tracy Bryan

  4. Duffy, I am sitting at work with tears in my eyes reading your post. I have been praying non-stop for each of you, especially sweet Kaylee, since I heard the heart wrenching news. I have also had our Sunday school class lift her up in prayers as well. If there is anything we can do for y’all please don’t hesitate to ask!

  5. Praying for your sweet baby girl, Kaylee! You are amazing parents and have so many prayer warriors out there. I can’t stop thinking about you all. God Bless you and your family.

  6. I remember when you were just a few years older than Kaylee! You will always be a precious little girl to me. I will continue to pray for your darling Kaylee, for you, Chris, & all the medical professionals. I will pray thru tears & praise Kaylee’s successes.
    Love, Susan Giurato

  7. Duffy, Chris, and Little Kaylee:

    I am friends with Jessica and Jennifer Cannon and I have seen how much they love your sweet little Kaylee from before she was even born. As a Mom with a young daughter I cannot even begin to imagine what your family is going through. My heart hurts for all of you, every day. I do not even know you personally and I have been thinking about all of you since I heard this news close to a week ago. Please don’t forget that you have hundreds/thousands of people who are praying for you and your sweet girl. Kaylee is going to beat this, I just know it. God has big plans for such a little girl, just wait and see. If you guys need anything at all do not even hesitate to reach out. I’ll be following Kaylee’s story, sharing Kaylee’s story, and praying with you guys every step of the way. #teamkaylee – Isaiah 41:10

    Melissa Camp

  8. You are not dumb. You are one fabulous mommy! Ive said that a million times before she got sick, and I will say it a million times now.

    Seeing how you both have taken on this new “role” in your life as parents makes me feel so proud, and so hopeful. You two are the two people K will always depend on, and you have not and will not let her down!

    I’m blessed that you 2 are my family, and even more thankful that sweet fighter is my beautiful God daughter. my love for her is endless!

    Love yall!

  9. our thoughts and prayer are constantly being sent, not only from myself, Mark and Gavin but from other friends and family members that send their love. Contiune to be as strong as you can and know we are here for you guys! xoxo

  10. You are an amazing mom! You did what any of us would do! Try to make your baby happy and if all else fails- call the Dr! I look forward to reading your blog and follow as Kaylee BEATS cancer! She WILL beat this!

    Send lots of love and prayers your way!

  11. Thank you for taking the time to keep us updated. You can count on the Lees to pray. Please let us know if you have any needs.

    Psalms 33:20-22 Our soul waits for the LORD; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O LORD, be upon us, even as we hope in you.

  12. Duffy and Chris~
    What amazing parents you are to that sweet munchkin!! God sometimes gives us battles that we can’t begin to understand, but he gives his toughest battles to his strongest soldiers. I stand with you in believing and knowing that sweet Kaylee will be healed in Jesus’ name. Your days will seem long, but know that you are never alone. You have an army standing behind you for this battle!!

    Proverbs 3:5-6
    Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

  13. I Go To Oak Hill Baptist Church And We Are Praying For You A.J Mother in Law And Father In Law Goes To e This Church I’am The Pastor Wife Just Remember Kaylee Is Covered with Prayer from Our Church And So Is Your Family.

  14. Praying that in His perfect faithfulness that He will carry y’all through this and that His will would be done. Praying for her quick and complete healing…we know He is powerful enough to accomplish it! He’s doing work through this dark time, He will use it for good. Romans 8:28!

  15. So sorry to hear this about your precious little Kaylee. I will be praying for her and for all of you. Frieda Matthews (Melisa’s Mom)

  16. You have LOTS of prayer warriors keeping Kaylee, you and Chris in their prayers! My family and I will keep praying for you all. Thank you for the updates. Please let us know if there is anything you need…meals, visits or anything else!

  17. So scary Duffy! Still praying for little sweet Kaylee! And you and your family. Hang in there…got a bunch of others saying prayers too!

  18. Hi
    You don’t know me but I am friends with Kati Quinn. I wanted to share my story with you for maybe a little inspiration. My mom-63 years old was diagnosed with ALL on January 9,2013 she started chemo right away at northside hospital from the blood and marrow group of Georgia come to find out she had also something called the Philadelphia chromosome (don’t know to explain expect makes it harder to beat). So they did 2 rounds of chemo and she went into remission and she needed a bone marrow transplant so April 17 she had a bone marrow transplant and for 100 days was in and out of hospital. And now almost 120 days later she is doing amazing. All her blood counts are on the rise, she is eating, walking on her own, getting her engery back and everything is looking great. So my point is that it’s a roller coaster. Do not ever lose hope, stay positive, try never to be negative, I told people to not feel sorry for my mom or my family to say extra prayers and stay positive.also, let people do what they can to help you!! They want to sit with your daughter let them, they want to clean the house let them they want to cook for you let them. Choicehope is a great page. It can be beat and I know in my heart she will running and jumping in the next 3-4 years. Please contact me if you have ANY questions. Ktate1482@gmail.com. She is my positive thoughts and prayers. Ktate

  19. We will keep you and your family in our thoughts and prayers as you face this challenge. Don’t “own” the “what ifs”(as in “if only I’d acted sooner”.) It’s a waste of energy. You did what you needed to do at the right time because Kaylee is getting the care that she needs at a wonderful hospital right now. You a sweet, loving mom who cared enough to “check out” your concerns with your dr. Praying for wisdom and strength for all as your daughter heals.

  20. I saw your link on a mutal friend’s friend page and had to reach out. I KNOW what you are going through. I know because our daughter was just diagnosed with kidney cancer on June 1st. It all stinks, but I will tell you CHOA is the best place to be to make it suck a little less. We are there every week for chemo at the clinic now. If you want to vent or ask for questions/ resources/ anything…please email me.

  21. Thank you for sharing this, honey. I was really wanting to know how it all happened because we had our play date the week before, so I truly couldn’t wrap my head around it! You are so brave to share your story- I hope it gives you more strength to be there for Kaylee. I’m also so sorry I didn’t notice the changes in Kaylee on our play date. Looking back, she was pale, but I thought nothing of it. I feel terrible that I told you not to worry about her loss of appetite. I truly thought it was teething or even a small bug. I’m just so glad you have a wonderful doctor that went into “go” mode immediately. Please let me know if I can do anything- I’m just a short drive away to your house. Don’t hesitate to ask or have your mom call or text me. Lots of love to you three. Robbie loves Kaylee.

  22. James, I, and my close girlfriends are all thinking and praying for you. And strong mom’s cry and fall apart. Your love makes you strong. Same goes for dads.

  23. Praying for your daughter and for everyone involved in her treatments. God Bless you all!

    A grandmother …..Mimi….

  24. I am keeping Kaylee and the family close to my heart and in daily prayers. Stay strong little peanut from Georgia. Karen

  25. Duffy, I have not stopped thinking about your daughter, you ,and your husband! I have told everyone Kaylee’s story so they can pray for her strength and quick recovery. I think you acted the same way most parents would. I am so glad Dr. Hill went further on your daughters blood test. Thank you so much for the updates and please tell sweet Kaylee so many people are thinking about her and praying for her. My friend’s daughter had Acute Lymphoblastic Leukemia at age 3 and she is a beautiful 10 year old!! I will message you her information if you would like someone to talk to.

  26. Dearest Duffy,

    I am crying as I read your post. I am 43 years old and a single mom of 2 boys, ages 7 & 5 months. I am in constant paranoia of something going terribly wrong with either one of my sons and can’t even begin to fathom what you, your family and that sweet baby girl of yours is going through. I am struggling in my faith with God at this point in my life after being raised as a strict Catholic. My 1st public school was college and my father is even a Deacon in the Catholic Church. I want you to know that I am thankful for reading your post and my faith in God is being restored as we speak…I will pray for you, Kaylee and your family!!!! I do not know you, but saw your feed on my friend, Sara McCollough’s facebook page. I too will share it on my page. Please feel the warmth of my hugs and prayers around you and your family during this difficult time! I will ask my father to include you all on his prayer chain call list here in Clearwater Florida. Please be strong and rely on all the care that I am sure is to come!

    Molly Lyons

  27. Dear Duffy and Chris, our thought and prayers go out to Kaylee, both of you and your families!!!!! My heart just breaks for you all and I want you to know if there is anything We can do for you please let us know. I know we don’t live next door any more but want you to know we are here for you. Give kaylee a hug and kiss from us!!! Your friends and past neighbors, kathryn and trace gabriel

  28. Duffy,

    It’s Jennifer from the Goddard School where we met Kaylee just a few days before this life changing event. I want you to know your family and Kaylee are in our thoughts and prayers . We will follow your blog and be with you in force and prayer until she is well.

  29. Duffy,
    I read about Kaylee’s story on a former neighbors fb page. (Rachel Wiggins Lee). I love the words your uncle shared with you…. “Do not for one second feel sorry for yourself, or for Kaylee or for Chris. It is a waste of energy that can be spent fighting for your daughter, praying for your daughter and encouraging your daughter. God has chosen you three to lean on Him during this trial and to trust His purpose. You job is to love your daughter, and to teach her to fight, and pray…Pray everyday for the Dr’s, the nurses, for her and know that God will heal her, because He can!” NO more truer words were spoken. There is no one better to lean on not only in times of hurt but in good times as well as our loving God
    We were told that my daughter, Cherie, who was very tiny 9 months old at the time, would have to have a heart operation at age 2. She had been diagnosed with Atrial Septal Defect with a considerable size hole. I can remember when I found out how angry I was at God for letting this happen to my precious baby but I did a bunch of praying that first night and a peace came over me knowing that God was in charge. Prayers were lifted and by the time we went in for her 1 1/2 year checkup, it had shrunk considerably. I know this is common thing to happen but I firmly believe that the prayers helped shrink that hole. Today she is a healthy energetic (played soccer and lacrosse at college level) almost 25 year old woman. Runs in 5 k’s.
    I know Kaylee will one day be out there too keeping up with the best of them.
    Praying for you all including the staff at Scottish Rite. I will pass this on to my friends at my church, Mountain View United Methodist Church and prayer web page (FROG -FRIENDS RELYING ON GOD). Prayer changes things.

  30. We are praying and will keep praying just as YOU prayed for our little Afton when he needed it. Shay (Frink) Swayze….Afton’s Nonni

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s