Maintenance Phase

5/16/14

Duffy (K’s mommy) blogging

(Apologizing in advance at the length of this, but a lot to catch up on.)

Friday May 2nd Kaylee started the Maintenance Phase. From my trusty binder of info I brought upstairs with me to write this, I can tell you what the purpose of this phase is for and exactly how long this will go on. The purpose of this phase it to kill any residual Leukemia cells. The Maintenance cycles last about 12 weeks and are repeated for the year and ½ left of treatment Kaylee has. This means that this phase is the last yet longest phase of her leukemia battle! (I usually break it down by saying, 2 more Halloweens and one more Christmas to go before her “scheduled” cure date!)

So how has Kaylee been since May 2nd? Her first sedation and chemo day at the cancer clinic for this phase on May 2nd went well. We arrived super early to make sure she would be the first to be sedated, and get her chemo immediately after, so K wouldn’t have to go without food for too long & Chris could return to work when we were done. She was a rock star and Nurse Karen made sure K got to pick out a new toy from the toy closet when she was done, so all was right in the world to Kaylee. That Little Mermaid handheld fan kept her playing and awake the whole way home. Lol.  May 3rd, K had a great day at our friend’s graduation party where there were a ton of other kids to play with. Chris and I were able to get a badly needed date night out that evening as well. We had a great night with friends and we were so thankful Chris’s mom and stepdad came over to watch Kaylee for us!

This phase starts out with K taking the oral prednisone steroid for the first 5 days every morning and evening. She is given Vincristine chemo through her port once every 4 weeks. She takes daily oral chemo of Mercaptopurine. She gets a preventative antibiotic; Bactrim every wknd (as we are used to doing by now.) She also takes another oral chemo Methotrexate every Friday.  She has taken all of these medications before, with the exception of prednisone. When K had to take a steroid in the past it was a much more severe steroid, so the thought of prednisone (in my head) would be child’s play for her. Man, was I proved wrong again! I will just shuffle along to the horrifying day of May 7th which was after a few very trying days with Miss Moody-cant-stop-eating or crying randomly.

We had a play date that morning, and K seemed pretty moody but not anything too abnormal for someone taking steroids. It was around 1:00 that things got bad. K started crying and literally writhing in pain. When she would finally catch her breath through tears, she would scream “Mommy! Tummy HURT!!” grabbing at her tummy. I called K’s Dr and left a msg. I gave Kaylee Tylenol which seemed to help enough to allow her to nap….for 40 minutes… until her screaming had me coming to her room to see what was wrong. She was in tears grabbing her tummy again. I sat with her in the glider for a while and rocked her and she tried everything to get comfortable and she was so tired. Pain seemed to really hit her just about every 2 minutes. Officially worried now, I called her Dr again, silently praying over Kaylee as she would scream in pain. No parent should EVER have to see their child in that much pain! When she seemed to calm down a bit, asking for a snack and to watch Princess and The Frog, I was thanking God for the reprieve. By 5:30, I hadn’t heard from K’s Dr (nice…. Really nice…) and Kaylee was in pain off and on. I finally, texted our friend Amanda who is also a nurse what was going on, and asking what I could do. She said we could use the Lortab the Dr’s had prescribed K to help her pain and asked if K was taking Zantac, because on steroids she should be taking Zantac every day. I ran to K’s med list noting that Zantac wasn’t even listed for her to take. (At this point, the clinic is closed and I have called for the emergency on call Dr 3 times, being as annoying as possible so someone would call me back! Chris had also called me from work sounding stressed & relayed he wouldn’t be home until well after Kaylee’s bedtime.) I was on my own. This is when I had a mini meltdown. As I got K’s dinner ready I let myself throw a silent 3 minute pity party in the kitchen, letting loose the tears of not being able to help my child in pain. Kaylee ate dinner, and I tried everything to distract her, but she was back to screaming and crying in pain. I gave her Zantac, and lortab~ withholding her nighttime steroid until a Dr called me back. As I was giving K a bubble bath, I finally got a call back at 6:30 from the emergency on call Dr. This Dr was absolutely horrified that K didn’t have Zantac listed on her med list b/c the steroids mixed with the chemo could cause serious pain, ulcers & pretty painful heartburn for an adult, let alone a 2 yr old child! She was supposed to be taking Zantac to protect her tummy since May 2nd! Anger doesn’t even describe what I felt for Kaylee’s Dr. Thank you Lord that after the bath K seemed so much better! The Zantac and lortab had kicked in. After her jammies were on, books were read, a ton of snuggles and my nighttime prayer with her was over, Kaylee was seemingly free of pain, preciously sound asleep in my lap.

May 8th, was an entirely different day. With a ton of prayer supporting K, and Zantac given to her that morning, K was a happy girl! I took her to the outlets nearby to hunt for cute birthday gifts for my niece & nephew. K had so much fun in the Carters store picking out a few summer shirts and skirts that she liked (which surprisingly matched) and I couldn’t stop laughing when she would smile and pick through the bottom rack of skirts and say “mommy, this cute…you think?” such a little adult! She was ecstatic when we were outside walking to a different store; a song from Frozen started playing through the outside speakers.  I was the mom walking with her 2 year old singing on the top of her lungs to ‘Let It Go.’ Didn’t care, loved every minute of it, totally encouraged it, because my child was….happy!  J

Saturday May 10th, Kaylee had a great day. We went to our niece and nephew’s birthday party and K got to see so many relatives she loves so much! She of course made a beeline to hug her cousin Micah and laughed while he and the other boys at the party had a balloon fight. She took a walk hand in hand with her Godparents, pointed out big trucks with Uncle Kevin, gave hugs to just about everyone, and wanted to eat a million of the birthday cupcakes! Family days are seriously so good for the soul! Mothers Day was May 11th ~ Chris had set up reservations at a beautiful Mothers Day Brunch nearby, and Kaylee loved people watching and eating endless amounts of bacon and fruit. (Soon we will get to attend church on a Sunday as a family!) Chris told me to take some time for myself to get a pedicure I had gotten a gift card for at Christmas. I felt a bit guilty leaving b/c Kaylee is the reason I am a Mother on Mother’s Day, but to be honest that hour alone was heavenly, and she had a blast playing with her Daddy!

This past week has flown by, with a few play dates and scheduled lab work to get K’s counts checked. Nurse Mary called to share her outstanding counts with me. Her ANC (white blood cells that fight infection) count was 1481 (fantastic!) Her Hemoglobin was great, her Platelets were in the 200’s (also very good) and her other counts were stable! Such a praise to God! She is still a restless sleeper every other night (had me awake hourly from 4am last night.) but I will take restless sleeping over her in pain any day!  Kaylee does not have to go back to the clinic for sedation and chemo until May 30th. It is so nice not having to trek back and forth to the Cancer clinic twice a week!

Kaylee’s grandparents (my mom and stepdad) will be flying in to visit next week and I couldn’t be more excited! We have a few fun things planned to do, so I’m looking forward to getting some cute pictures! Oh, and we are also seeing some fuzz coming in on Kaylee’s little head, so that is encouraging!

I need to thank y’all again for every prayer, every sweet comment and for sharing K’s story! We have made our life an open book in an attempt to get her as much prayer as possible! We are thankful she has had so many smiles lately, such high energy and talking up a storm! I seriously crack up daily at the things that she comes up with! It has been a long 9 months since she has been diagnosed, but we have learned a lot and are trying our best to make life as normal as possible right now. We are looking forward to many more happy days to come, as Kaylee continues to shine even while taking daily chemo…and THAT is something to thank God for!

Enjoy your weekend, thank you for reading my rambling, and when you get a chance, please continue to PRAY4K.

*Favorite Song of the night: Needtobreathe~ Multiplied.

Jeremiah 29:11~ “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

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8 thoughts on “Maintenance Phase

  1. So glad you got her on meds to help with pain. Odd they messed up such an important med.
    Love and prayers

  2. Really do enjoy your Blog, Happy she got over that stomach pain poor little sweetie didn’t need another problem. You are an amazing person I truly admire your strength. Keeping the prayers coming for all of you.

  3. Dearest Duffy, Through all your trials, tears, fears and anguished hours, our prayers have been with you, Chris and brave little Kaylee (who doesn’t need no stinkin’ hair to be beautiful). Those two Halloweens and one Christmas, as you forfeit your holidays to the “new and improved” Kaylee, we gladly will look forward to the days and months counting down….and yes, holding your hand and listening to your aggrieved senarios as you journal this arduous path you were given. No doubt you were blessed with a soul filled with strong light, that’s where your strength comes from. You have a wonderful mom and stepdad, and I’m sure Chris, his folks, and the rest of your family and friends are a great support group for you. Consider me as part of your peanut gallery of prayers. It’s a little like having “one’s back,” except that praying’ is a little like asking God for a favor. I think I’m owing big time, but God’s delivery sure has been good! Keep the faith and you know what Duffy, sometimes you gotta cry and just throw the mashed potatoes on the wall! Michele

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