Whew! It has been awhile since I updated this, so I apologize if you usually follow our updates. We were discharged from K’s last Methotrexate chemo 4 day stay at the hospital on January 27th, and she cleared the Methotrexate out of her system just as good as she did last round! We said good riddance to the Interim Maintenance phase, and we were told Kaylee would begin the next phase (that a few moms I’ve talked to call the 56 days of hell) on February 14th…Valentines Day.
Let me back up to let you know how the last almost 2 weeks has been. Chris and I were hit with one seriously nasty cold. While we were in the hospital, Chris was just getting over the worst of it, when I got hit with it and felt like I had been run over. I didn’t leave the room too much and K didn’t seem to mind as she was just getting the cold as well. We were discharged at 6:30 pm after our 4 day stay, and I kept her awake the whole way home so she would sleep well in her crib. Kaylee shocked me and slept in her crib all night the first night without a fuss! In the past, after sleeping next to me for a few days in a row in a hospital bed, she did not like sleeping alone. (Thank you, Lord!)
The first day home was the now infamous “snow day that crippled Atlanta.” I was so excited to let K play in the snow for the first time, yet anxious to get Chris home as soon as I saw the snow start to stick. He laughed at me when I called him at work & told him to come home b/c the roads were getting bad. Just to appease me, he said he would come home for lunch and then head back to work. THANK GOD he left to come home for lunch when he did. His 13 mile commute took him 2.5 hours to get home and this was at 11:45 am! This was before all the real chaos started! A ½ hour into his drive home, he called his coworkers and told them how long it was taking him to get home so they left work, and their usual 15 min commute took them 5 hours! The roads had turned to solid ice and people were abandoning their cars and walking. Not many people in Georgia are equipped to drive in snow or ice, nor do we have many salt rock trucks, so although I’m sure all of this sounded funny to people up north, the roads and what people were going through on that day (and the following 48 hours) were no laughing matter. Thankfully for us, Chris got home safe while Kaylee was napping. We went sledding down our steep driveway taking turns watching the monitor. Once Kaylee woke up, we dressed her in layers of fleece, her thick puffy coat, a warm hat and mittens. We were more excited to see her play in the snow than she was, but she loved it! Well, she loved it until she learned that snow is wet. Lol. We took turns taking her for a much slower sledding experience down our steep driveway and yard, and she would clap her hands yelling “again!”(Sweet girl.) Since she was 1 day post chemo, I didn’t let her play very long, but we were able to capture some great memories on camera!
She seemed great for the first two days but we knew that the 3rd-5th day post chemo is usually rough. My birthday was actually her 3rd day post chemo and she seemed a bit stiff walking and a bit whiny but not bad. She even attempted to sing Happy Birthday to me with her dad’s help that night which was precious!
It was Jan 31st that was the worst. She cried off and on all day, tugged at her mouth saying “Hurt!” I swabbed her mouth with Magic Mouthwash (a mixture of Lidocaine, Benadryl and Mylanta that soothes and numbs the pain of mouth sores caused by chemo) It startled me a little that at naptime she grabbed my hand placing it on her ribs and crying out “hurt, mommy. I hurt!” this broke my heart (you never want to see your little one in pain!) I gave her Tylenol and did my best to kiss and pray her tears away. The Dr’s have given us stronger pain meds to give her, but we have always been very hesitant to give her that. She took an amazing nap, but that evening she was grabbing at her legs saying “hurt!” (The Methotrexate causes so many different places of pain.) She cried a few times after putting her to bed and eventually at 2am, (when she woke up and stood in her crib yelling for us) we brought her to our bed where she woke us up a few times whimpering in pain tugging at her legs(again, killing me to feel so helpless with her in pain! It is the worst feeling!) We just tried to cuddle her and let her know we were close, which seemed to help somewhat.
Feb 1st seemed to be bit better with her still taking a fantastic nap and eating a ton of food. (Sidenote~ she has GOT to be going through a growth spurt b/c she is literally snacking all day long in between large meals! It is so not normal for her and she isn’t on medication that would cause this kind of hunger, so I’m going with a growth spurt. I am not complaining about it since we spent so many months begging for prayer for her eating to improve.) Anyway, Feb 1st was a Saturday and Chris and I needed to go to the mall. Although she has obviously been there before, this day she was happily mesmerized with people watching. She clapped her hands and squealed when she saw the Disney Store and ran to kiss the big Mickey Mouse figure that holds the Disney store sign. She would look at all the princess dresses in the store, and then turn around with a big smile at me and say “Fun!” Hahaha that’s my girl!! She of course went nuts when she got to the Minnie Mouse section and wanted just about everything. We found out they were having a buy one get one ½ off of the Disney characters sale, so we immediately let her scoop up the entire clan of the Mickey Mouse Clubhouse while calling them all by name handing them to Chris! (She doesn’t know we have hidden the Disney bag containing all the characters, but she will get them on her Birthday coming up!)
The rest of the days have been both good and bad. She seemed to have fun at the Super bowl party we went to where quite a few kids her age were playing together outside! She has cried out in the middle of the night almost every night (when neither of us mind if she joins us in bed, since it is usually really late at night, so she has.) She still immediately snuggles up to Chris when she comes to our bed, but lately we have had to convince her that 2am is not party time. Its all fun and games until a 23 pound toddler sits on your stomach full force and then giggles about it when you are jolted from your sleep. Not funny, Kaylee. Chris was equally as pleased when she kept poking him in the eye to wake him up at 3 am. Sounds pretty humorous now….but oh we were so not amused the two nights this occurred. We have had a few play dates lately which always perk her up, and she had so much fun at the playground with friends yesterday as well! She is currently obsessed with hugging the dogs after her nap, counting to 10, eating cinnamon raisin bagels, throwing her Elmo doll and Minnie Mouse down the slide before she goes down it, wearing fake jewelry, and hiding every Chapstick I own. 😉
I have been in full party planning mode for Kaylee. She turns 2 years old on Feb 24th! Chris and I really struggled with what to do about a birthday party for her and who to invite. She will have just finished her first few days of this next phase of her cancer battle. There is no telling how she will feel, and we have no idea how her counts will be. So, we ultimately decided on just inviting family, and very few close friends. Since Kaylee is clearly obsessed with Minnie Mouse, that is the theme, and I pray she will feel well enough to really enjoy the day we have planned for her!
This brings us to the next phase: Delayed Intensification. Like I mentioned, this will begin on Feb 14th. For those that mentioned being curious about the medications she will be taking during this phase, feel free to Google the side effects of each one and you will see why I have the hardest time thinking about the upcoming 57 days. Here is the list: Vincristine, Dexamethasone (<the steroid), Doxorubicin, Pegaspargase, Cyclophosphamide, Cytarabine, Thioguanine, and Methotrexate (<which will be inserted in her spine.) Some of these drugs are to be given to her orally, some by an IV through her port, one is inserted into her spine, and then there is the chemo injection Chris and I have to give her 3 times a week. I keep getting repeatedly told “Just think of this as just what she has to get through to make her better, healthy and strong again.” I get that, and I appreciate that…BUT When it is your own child, and you read through a list of what they might experience that will cause them pain, total hair loss, sleeplessness, irrational behavior, mood swings etc etc… nothing that people try to say makes it any easier. It plain flat out stinks. You can be the most positive God-loving person on the earth, and it still just hurts your heart. You would give anything to switch roles and take on her cancer yourself….she is just so little, it never seems…fair… well, for any child to go through this. We have always said this will be part of her life ‘story.’ She will come through at the end of this and we will thank God for his mercy and healing, and we will. We are. It just still stings having to live it.
So, with that said, we again ask for a giant force of prayer surrounding our little girl through this next phase. Share her story with your church, your friends…whoever…the more prayer over her name, the better! We truly believe God is in control over all of this, and will heal her. We have seen so many blessings along this journey! We always thank the Lord that things aren’t worse…because they truly could be and we are beyond grateful that Kaylee has only had to endure a handful of the possible side effects during each phase. We are praying that during this phase there will be 0 side effects~ none! I truly believe this can happen. We will pray for the nurses giving K the chemo, (most of which have become like extended family to us) and for her to stay well. No fevers! (A fever will land us back in the hospital.) We will pray for her sleep so she can heal from the constant drugs in her body. (If you have read our blog from the beginning in August, the steroid & then steroid withdrawal was a really hard part of this journey.) Above all else, we thank the Lord for all He has done already and continues to do for Kaylee and our family. Forgot to add that many of the Dr’s so far have mentioned that they have been baffled by the fact that Kaylee still has hair! (They keep reminded me that she won’t after a few weeks into this next phase, but Hello! That has been a nightly prayer request! God is so good and we are so thankful!
We will try to keep you updated more often through this phase; what is going on, and how she is doing. Please keep Kaylee in your prayers. Thank you for reading my rambling and praying for our family! I cannot wait (CANNOT WAIT) to use the words “Cured!” We still have a long road ahead, but we can see the light at the end of the tunnel! Enjoy your weekend & Pray4K.
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.
**Song to listen to this week: Hillsong United- Oceans (Where Feet May Fall)
(Thank you to Suzanne Hartzler for introducing this song to me months ago!)