Duffy blogging

Prayer & Wine

So before I get into today, I thought I would share bits and pieces of yesterday. Yesterday K woke up at 8am (in her crib.) The day started out with me thinking my daughter was a rock star. She ate her breakfast, and then it was like a switch went off at about 10am. She was throwing a fit…not like a regular child fit; this was a steaming mad about nothing raging fit with tears, arching and screaming. I did the best I could to keep her somewhat emotionally under control until thankfully nap time came around. I knew two of my friends were coming over to visit and meet about these PRAY4K bracelets my friend (Karen) made for our family. I called the clinic concerned about K, where they told me it might not just be chemo that was making her freak out. The Dr. said that since it has been a week that she has been off steroids, her body was going thru a normal withdrawal that they should have warned us about while we were at the hospital (they probably did, but I think my brain is at capacity with new information, as you can imagine.) Apparently the withdrawal symptoms include emotional outbursts, immense pain in the bones and joints (as does one of her chemo treatments~ excellent) and sleeplessness. She said to use the Hydra codeine that she was prescribed, or if I didn’t feel comfortable doing that yet, to try Tylenol. K took a total of a 30 min nap and I gave her Children’s Tylenol. My friend Leslie was visiting with her 6 week old baby boy which seemed to make the problems K had previously, vanish. (Maybe it was the Tylenol too, who knows.) At any rate, K ate a mini lunch, while staring at baby Jace. Karen (or as I will now forever call her; The Baby Whisperer) came over too and after we checked out the bracelets, she worked from our house and helped me keep K entertained. My child (who has always had separation anxiety) was now reaching for Karen to pick her up & and giving her kisses, reaching for Leslie to hold her and watching Jace sleep in her old rocker I brought up from the basement. . This was awesome for me to see, and she was happy for the duration of their visit until Chris came home from work! She was toddler-like fussy while we were getting dinner ready. Chris’s Uncle and my brother came over for dinner and K was giggling and eating like a champ! She had a ball with them. Bedtime was a disaster which included her hurling the books we were trying to read her during story-time, arching her back so she wouldn’t sit on my lap, and crying.😥 She finally settled down & went to bed. At 3 am I was woken up by a blood curdling scream coming from the monitor. I went to calm K down who wouldn’t go back in her crib, so I took her to our room, where she kept me and her very sleepy daddy awake until 5:30am. She was only happy cuddling with him and as soon as he would drift off to sleep she would laugh and poke him in the eye saying “Eye!” (Not funny at 4 in the morning.) I finally used the loud ‘mom voice’ saying “Kaylee, go to bed, it is night night time!” to which she smiled and said “Nigh Nigh” and fell asleep rather quickly.

That brings us to today.

She and I woke up later than usual, she refused her breakfast and milk, she didn’t want to play with her toys, she didn’t want me to hold her…she wanted to cry. Her Godmother, Jenn came by to visit after K had fit # 3 of the day. Kaylee again was fine with a visitor (what is going on here?) And again shocked me by reaching for Jen to pick her up to give her a hug. Every time K got a bit fussy, Jenn and I distracted her. K finally ate ½ a serving of Gerber Spaghetti. & some milk. Jenn soon had to leave to go to work, and no more than 30 minutes after sweet goodbyes, K had another fit when I asked her if she wanted a Popsicle (? I know, makes no sense!)

At around 1:30, K just kind of broke down. This was a screaming cry that I could not soothe. I stood and held her trying to calm her down. It soon turned into her pain cry mixed with flailing her arms and arching her back causing her to scream/ cry even louder. I knew I had given her Children’s Tylenol at 11am and could not give her anything else for another few hours, so I tried everything I could think of to distract her. Finally, I carried her upstairs, turned her sound machine on, closed her drapes and tried to rock her. She was still arching and screaming. I just held her and loudly prayed over her, begging God to take her pain away, with no idea left of what to do. I felt absolutely helpless, and cannot describe the hatred that I felt towards whatever was making her hurt like this! She finally cried herself to sleep clutching my neck. I laid her down in her crib, gave her a kiss on her cheek, and walked downstairs. I stood in the kitchen, and let the day sink in and just sobbed while writing a begging plea to Facebook for people to pray. I read my friends “praying” comments while tears rolled down my face. I called my mother while I was still a still a sobbing mess of tears. She was with her friend (and prayer warrior) Lucy and they both prayed with me over the phone for Kaylee, me and Chris. K napped for an hour ½, and I greeted her happily while making her giggle with my dorky dances to The Lumineers, determined to keep her smiling for the remainder of the day We facetimed with Grandpa and Grandma while she (only) ate ½ a peanut butter cracker, ½ an organic fruit puree pouch and drank some of the Kids Boost I supplemented for her milk.

I had every intention of cooking a good dinner, but I was distracting Kaylee outside & by the time dinner time rolled around, I didn’t want to take K to the grocery store when it was so busy. I looked in our freezer and texted Chris with “Ummm so I have to grocery shop tmwr…does Chicken Tenders with glazed carrots and steamed veggies sound terrible?” God bless my husband who texted back with “sounds fine, be home soon.” K refused everything at dinner, made a huge fuss & pointed to the Easy Mac in the pantry, so Chris got that ready and she ate 2 bites and wouldn’t eat anymore.(what is she surviving on…air??) Chris was able to witness a fit K had when he tried to get her to eat some applesauce, and said “not an easy day with her, huh?” I gave her a bath hoping to sooth her aching muscles and horrible diaper rash chemo gave her (the nurse saw it on Monday and confirmed chemo does this~ ugh.). She did great during story time and gave Chris a quick “Nigh Nigh” kiss and cuddled into me and fell asleep rather quickly. I transferred her to her crib, walked downstairs and poured myself a long overdue glass of wine! (I didn’t mean for this to turn from a blog into like a diary entry here, but trying to give you a glimpse of the day.)

So…THANK YOU to everyone who prayed for her today during my meltdown, and thank you to the people that are continuing to pray. Today was emotionally exhausting & Cancer sucks. I sound like a broken record, but I truly believe prayers can move mountains, and have seen Kaylee thrive off your prayers, so we still so badly need those. I am so thankful she has not had a fever, and thankful that we are still home. I am thankful people are still reading our blog, thankful that people are ordering our Pray4K t-shirts to show their support, and thankful people care enough to pray for our baby girl! No child should ever have to go through this! Our HUGE prayer is for September 4^th (next Wednesday.) She will be going to the Scottish Rite clinic and will be sedated to get a bone marrow aspiration & a lumbar puncture to extract spinal fluid. Both of these procedures are to test for leukemia cells (we are praying for 0 leukemia cells!) This fight is far from over, and our little fighter is getting worn out, so I ask that you pray that God will reinvigorate K with more energy, a better appetite, and fewer tears. That God will heal her completely, and allow all of us to get the rest that we need!

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.”

#PRAY4K