12th day of ‘Induction’ (phase 1 of chemo)
We woke up on Thursday with hearts of gratefulness and a bit of fear. I made sure K ate a great breakfast and we were able to have our training class on Leukemia in our room! Kaylee finished up her IV of fluids while watching us intently while we packed up the room (k played with some new toys on the bed.) Around 3:00 we were ready to go and the Chief of Oncology came to check out K and assure us we were prepared to take on this challenge of taking her home. Kaylee had a total of a 15 min nap before the nurse needed to take the outer part of the port off (the actually port is still inside her chest to access weekly for chemo) She screamed bloody murder as they tried to take the tape off as delicately as possible while I held her in my lap & tried to comfort her while not looking at the needle coming out. As soon as that was over, we were able to head home! Watching Kaylee’s face light up as Chris pulled the car up filled my heart. On the way home, we watched her checking out everything passing by us on the highway seeming content and tired. When we pulled into the driveway we were surprised to see balloons attached to every section of our front porch and mailbox (Courtney Carignan, you are SUCH an incredible blessing of a friend!)
I guess I was very naïve in thinking K would be super happy to be at home, but just like the day I made the Dr Appt that led us here; she threw a fit of crying and stamping her feet if I wasn’t holding her. So, I couldn’t really help unload all of our stuff or unpack it all with a 22 lb. child attached to me. Sweet Courtney (who lives just a street over) brought over an amazing dinner, and I was thrilled to see K eat & enjoy it with us! We gave her a bath, did our usual story time and thought we would lay her down in her crib as usual but I was not prepared for the flailing and screaming. She was almost trying to climb the rails to get out! Chris and I were at a loss… Do we rock her? Do we let her lie down in our room and then try the switcheroo? We did both. Anytime we got her near the crib she would somehow wake up and freak out. We resigned to just let her be stress free and sleep with us. (I slept in the hospital bed with her every night for 14 days, so it will be a transition.)
A few hours later I had my first mini breakdown. I was getting the meds ready just as the nurse taught me (while Chris was upstairs with a sleeping Kaylee in our bed) and I couldn’t find a few things the nurse had used to demonstrate to make crushing the pills easier, and I didn’t recognize the name of the generic version of the Zantac K was prescribed. I let doubt and fear take over and thought I was doing everything wrong. What was going on in my head: “was it 1 or 2 mgs of hot water added to the syringe to dissolve the crushed steroid? Was it 1 mg or 3 mg of the syrup that I needed to add to the syringe to take away the bitterness? Am I supposed to get the liquid meds straight out of the bottle or put it in a cup and suction it out of that?! Where the heck is the Zantac? I don’t even recognize the names of these 5 bottles of prescriptions…I could really hurt Kaylee if this isn’t correct! (Stress TOTALLY took over…so I did what they told me to do and called the Clinic.) Talking at a rapid pace of worry with a shaky voice to the on call Dr, who after listening to what I did assured me I was correct in everything I had prepared to give K! This finally allowed me to exhale. Thank you Lord!
K, as usual took her meds like a champ and went back to sleep. I looked at Chris with tears in my eyes and said “I was so worried I was doing it all wrong, and she could’ve potentially been really sick if I did! I let a few tears fall from the leftover stress in me. She slept most of the night holding my hand, and I fell asleep praying for God to heal her.
I woke up to a crying and moaning little girl right after Chris had kissed her goodbye before he left for work. I opened my heavy eyelids to try to comfort her and try to get her to go back to sleep but she wasn’t having it. I carried her downstairs. She immediately pointed at the banana on the kitchen counter “Nana Momma! Nana!” SO I quickly made a cup of coffee, grabbed her cup of milk, the banana and a yogurt with her spoon and went back upstairs where she eagerly ate the entire banana, all of the yogurt and drank her cup of milk (and finished with a “Ahh!” and a smile at me. cracked me up.) After watching Sesame Street, I got her dressed for the day (and this is where my breakdown # 2 occurred) I had washed her face, and got out her comb and combed her bed head out. I looked at the comb and saw hair that had come off on the comb and realized it was already starting. The chemo was starting to take my baby girl’s hair. Before she could see me cry, I kissed her little cheeks and carried her to the bedroom to distract her with some toys and Curious George, and while she sat on my lap with her back to me, I silently sobbed. Yes, I know hair grows back! Yes I know it is part of her kicking cancer’s butt, and it is “just hair” but for some reason the hair loss aspect of Chemo is killing me. I can somewhat try to distract her from pain, I can somewhat help other things that come along with Cancer, but I can do nothing about her losing her hair and that breaks my heart. It sounds silly, in the grand scheme of things, but I hate it.
The rest of the day was spent trying to distract her from moaning and crying if she wasn’t attached to me. Remembering the Chief oncologist telling us to treat her like a normal child and take her to the normal places we usually do (even restaurants, supermarkets and parks~ wha?) I took her grocery shopping (when I thought it would be least crowded) and she seemed to enjoy getting out. She enjoyed having visitors over later at the house, eating way too many cheese sticks & Face timing grandma and grandpa in Fla. We were blessed with an amazing dinner delivery from “Aunt Sherry” and K again ate all of the dinner provided (Thank you Lord!)
Some of you may have seen my post or picture of what occurred this evening, lol. After getting her ready for bed and story time, we tried a new tactic. I was going to attempt to lay with her IN the crib. I climbed into her crib and Chris lowered her down to me where I laid her next to me and guess what? No crying! No flailing arms or climbing the crib wall. :> She cuddled close to me and I laid there for about an hour before I started to inch my way out (this was a 20 min process and involved me doing the army crawl on the floor! lol) As I was just opening the door to make my quiet escape, K woke up! Ahh! She cried off and on for about 5 minutes and drifted back to sleep! (Praise God!) Chris and I prepared her night meds and we were sure she would flip out after waking up to get her meds, but she took them like a champ that she is, and promptly fell right back asleep! So as I am typing this, I am watching my sleeping angel on the monitor and praying she’ll have a fantastic night of much needed rest.
We are so incredibly thankful to have her home, to sleep in our own bed, to shower in our own shower, and not be woken up around the clock. We are so blessed beyond measure by how many people we have praying for our family and supporting us! We are thanking God for everything our little girl has already overcome, and we urge everyone to please continue to pray! Please pray for K’s pain to go away, for her body to make healthy white cells instead of Leukemia. Pray away infection that she is so susceptible to right now, and of course please Pray that God will heal her! We continue Chemo on Monday (along with a spinal tap and a chemo shot in her spine) and are praying for a good report from her blood work. We will continue blogging our highs and lows in this journey of Cancer and praising God for everything he is already showing us that He can do through our 17 month old little fighter!
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.
10 thoughts on “First Few Nights at Home”
This post made me cry. I have cried for Kaylee and her struggles. This post made me cry for you. As a mother, I can say I feel your pain, but really I have no idea what you are going through as parents. I will continue to pray for strength snd healing for the entire family.
My heart aches for you all. I have a 16 month old grandson that is healthy. The thought of the pain you all are going through with your little girl breaks my heart. I pray for you all and May God Bless your sweet daughter with health. May time bring the blessings to each of you. A grandmother, Mimi
Again, I am in tears as I read your story. I do not know you and can’t even begin to know your pain. Please be assured that I pray for you and your family and precious baby everyday and hug mine tighter every night and hope that I never have to go through what you are. Your posts make my stresses in life seem minimal so I thank you so very much for that. I wish I lived closer so that I too could help with meals and care for you to just take a shower! Prayers and strength being sent your way:O)
You are the strongest mommy I know, Duffy, and Kaylee is the strongest baby. Hair WILL grow back, and God will heal your spirit. Just know that we are praying for you ALL THE TIME.
I am so impressed by your strength. I know The Lord is providing for you each step of the way. And there is nothing wrong with being upset about her hair. We love our children unconditionally, but we enjoy their beauty. Kaylees appearance may change, but she will still be beautiful. Praying for healing, rest, and a consistent community to support and love your family.
Keeping Kaylee and you in our thoughts and prayers, It’s good that you cry that is a good release of stress for you. I cry just reading your messages. Though we have never met I feel love for you all. And pray as often as you enter my thoughts. My husband is your great geat Uncle Ron.
I am continuing to pray for all of you. I think it is so normal for you to be caught off guard & have meltdowns – over what may be “small things” but actually are important. You have been through so much in the past 2 weeks and your emotions are understandably going to be all over the place, now and in the future. I love the Jeremiah verse you chose; cling to God – He steadfast love endures and His faithfulness never ends. Remember what Mike would say in Senior high, “You can trust the heart of God even when you can’t trace the hand of God.” Thank you for the updates!
We are practically strangers…not having seen one another since high school…but I sobbed reading these posts. Duffy, you are a good mom. Cry those tears!! In the grand scheme of things, you’re right, hair isn’t that important. However, no parent wants to see their child in pain or blemished. Our heavenly Father sees your pain and hears your cries. Continue trusting His ways. They don’t make sense, but His ways are far better than our ways. Please know that an old friend is praying diligently for you and your sweet family.
Picturing little Kaylee “in the light of healing” and continuing to pray.
I continue to picture Kaylee “in the light of His healing hand” and have her in my prayers.