Counting down the days….

Blog updated by Duffy (mom)

Our little girl is two years old! How in the world did that happen so fast?! Kaylee turned 2 on Feb 24th (just a few days after her first round of chemo and daily steroids.) I always begin these blogs backing up to where I left off last, so here goes.

We took her to the Cancer Clinic on February 20th to begin the Delayed Intensification phase. She was sedated (which never gets easier to see,) to get Methotrexate chemo inserted into her spine to keep away any stray cancer cells away from there. The injection took about 5 minutes, and the nurses allowed us back in the room to be there when she woke up. They went ahead and started one of her two chemo treatments that would go in through her port while she was still asleep with us in the room. She was scheduled for Vincristine and Doxorubicin for anyone who wants to Google those side effects. By the time K woke up, she woke up quite peacefully happy to see us there and immediately asking for water. She actually asked to help the nurse push the syringe of Doxorubicin into her port line. “I help push” she said with a mouthful of a cereal bar. I did not realize this was going to be a quick chemo day, so when the nurse said, “we can go ahead and de-access her port”, I was happily surprised. Kaylee cannot stand anyone touching her port so accessing and de-accessing it has been a bit tricky on diverting her. That night we got her steroid ready mixed with cherry syrup and gave it to her orally praying she would not become as moody and sleepless as the last time she had this Dexamethasone.

It was almost instantaneous. The sun came up on Feb 21st and my sweet little girl became a crying mess. I was desperately trying to straighten up the house and cater to Kaylee, because my mom and stepdad would arrive shortly from Florida. Kaylee was on fit # 87 before asking for a nap at 10:30am. Her regular naptime is around 1:30, so I knew she felt terrible, poor thing. I’ve never been so relieved to see my mom and Ron walk thru that door! When Kaylee woke up she immediately looked happy saying “Papa? GaGa?” (Her names for Ron and my mom.) I said “Yes, honey they are here!” and she ran to the stairway smiling happily yelling “PAPA!! GAGA!” Needless to say, she was still Jekyll & Hyde all day but it was so incredibly helpful to have them here! They are masters of distracting her before she gets too wound up of crying about nothing.

Fast forward to her birthday party day Feb 23rd! Kaylee knew something was about to happen when all morning Chris, my mom and I were running around putting decorations up or cutting up food. She would look at me and say “I so excited!” precious. The Minnie mouse themed birthday party went fantastic and Kaylee only cried one time the whole day (when everyone sang happy birthday to her.) Her cousin, Micah received the biggest laughs out of her (she adores him!) She happily yelled “KEB-IN!” to Uncle Kevin about 100 times when he was leaving (they have a special bond and she instantly smiles whenever she sees him, and screams his name.) She hugged people randomly throughout the party, and although she still won’t smile on command for pictures, we knew from all the smiles and laughter throughout the day, the birthday party was a big success! Almost as like a special gift from God, the sun was shining and it was warm outside! Perfection! So so thankful this went well for her because she so truly deserved a special day! The next day was her actual birthday. Mom and Ron needed to head back to Florida, and I actually sat on the stairs with my mom before they left (when Ron was playing with Kaylee outside with the dogs) and cried to my mom. “How am I supposed to handle this without y’all? You’ve seen her. She is all over the place and I am wiped out by noon trying to diffuse tantrums or be understanding of the crying/screaming about nothing. It’s a train wreck.” My mom prayed with me and although agreeing with me that this phase is tough, she assured me all would be ok.
Side note: Kaylee remembered praying with Ron and Mom before meals the last time they were here, so every time we sat down to lunch or dinner Kaylee demanded “Pray!” heart melting! More often than not, she would demand “Pray!” 2 or 3 times per meal, and we would oblige. She still does that at dinner every night, and I love it!
February 25th, it was back to chemo. We have a “road map” of everything K will go through until this is all over, so it is super helpful to look at to help me keep up. She had her port accessed and Pegasparagase chemo. This was a 2 hour chemo and we were home shortly after lunchtime. For a little girl just having chemo and steroids twice a day, I would never have imagined I would catch her dancing to the song ‘Happy’ by Pharrell Williams later that day! This was such a joy to watch (and capture on video!) Regardless that she was dancing on the sofa ottoman and if she fell she could seriously get hurt. Watching her shake her hips while smiling just had me thanking the Lord for this gift of happiness on what could have been a yucky day! Who dances after chemo?! Love it!

Kaylee is barely eating anything these days, which is weird b/c this steroid is supposed to make her a monster eater. She was tugging at her mouth a ton today saying “HURT!” and I finally used a small flashlight, distracted her with Minnie Mouse and took a look in her mouth. Sure enough, baby girl has 5 mouth sores! YIKES! I wouldn’t want to eat either if it hurt! I immediately swabbed her mouth with magic mouthwash, and she helped me get dinner ready. She loves “helping.” She ate all of her dinner and asked for thirds! (Thank you Lord) So thankful for magic mouthwash! My amazing napper isn’t napping as well, but sleeping well at night (meaning she isn’t waking up hourly like last time being on steroids. She is still waking up once a night, but I will take that any day over waking up hourly with my little girl in pain.) We have had a few strangers feel it necessary to ask me her age and then bring up her lack of hair which has me biting my tongue each time. I did however finally explain to one person that chemo stole her hair when she wouldn’t let it go.

Tomorrow is day 8 of this phase and she gets a week break from the steroids! AMEN! She has chemo tomorrow (Friday) in the morning and I will be flying solo as Chris will be at work. Tomorrow she has a quick chemo day of Vincristine and Doxorubicin again. (Does anyone else feel like this tiny little girl is being overloaded on chemo? Yeesh.) She will return back to chemo next Friday (March 7th) and starts back on steroids twice a day at that time.
Our prayers for tomorrow and this entire phase (which is approx 8 weeks long.);
That she will have 0 side effects. That accessing her port will become easier, that we will find a way to keep K happy through this terrible phase. That she will come through this phase like the rock star that she is. Praying that we continue to lean on the Lord when we feel like breaking, and continuously thank Him in advance for healing her! There is not a doubt in my mind that she will beat this, but paddling through it sometimes feels endless. How blessed are we that we can unload the doubts and uncertainly to the Lord and say “Please take this. All of it. You already know the outcome, and we fully trust your timing, your reasoning and your ability to heal her, and that you will heal her!”

Thank you for praying for Kaylee, and our family! She needs those prayers, and we are forever grateful to y’all for sharing her story, and reading about how she is doing. Some days are great, some days are bad. But EVERY DAY we are thankful that she continues to fight!

Jeremiah29:11~ “For I know the plans I have for you” says the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

**If you would like to see more pictures of what Kaylee is up to, follow her on Instagram at KayleesBattle**

6 thoughts on “Counting down the days….

  1. God is watching over you all & has you in the palm of his hand! Remember that always & stay strong! You are awesome & Kaylee is amazing…Love you…Molly’s Mom

  2. you have a great family support system-especially when you need a cry or hugs going through such a difficult time. Great she had some fun for her birthday. Love the updates.
    God bless Love and Prayers

  3. Still burdened and praying for all of you. I can only begin to imagine how emotionally, physically, and spiritually exhausted you are. I am so glad that you have a strong support system and that God, our Abba Father, is well aware and caring for Kaylee. Thank you for the updates so we know how best to pray

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