March 26th-April 4th, 2014
Duffy blogging (K’s mom)
38 days of this phase complete!
(NOTE: This was originally written on April 4th, so this is behind & I have not changed what was written initially.)
I always try to keep this blog updated as often as possible, but I again let the last nine days since the last entry go by. The last time I updated this, we were about to start Day 29 of this 56 day phase. Today, we are finishing up day 38! How time has gotten away with me. I will try to remember how the last week ½ has been.
The Lord answered quite a few prayers from our last prayer requests. We asked for prayer that the long day of chemo on March 26th would go by quickly, and it did. The nurses were very thorough, and the pharmacy mixed chemo quickly and accurately. She still cried when we put numbing cream on her port (mostly because she has figured out what it means when we do that.) She still hates getting her port accessed and de-accessed, and we waiting hours for her to be sedated (with her crying out that she was hungry and thirsty often, which was so hard.) After the sedation was finally done (and me asking for someone in charge to speak to about the long wait for sedation) Kaylee pulled through the day like the fighter that she is. She was ecstatic that therapy dogs were visiting, that Chris listened to her request for grilled cheese and French fries for lunch, giggled with the nurses, and met another young fighter/ new friend named Hagan in the play area! (His Facebook page is Prayers for Little Hagan, if y’all want to check it out. We will be praying for that lil cutie & his family!) You would never know what was dripping into K’s little body the way she laughed and played! She didn’t even want to nap until we were in the car on the way home! We were so tired from the day when we finally arrived home, we both agreed it was a definitely order pizza night!
We started the chemo injections that we have to give K on March 27th; I didn’t think she would remember these because the last time we had to give her the Cytarabine injection was quite a few months back. She remembered, and she was not happy. I have to admit, this is one of the hardest things for both Chris and me to have to do. (To the parents of diabetic children that have to do shots daily, I have the utmost respect for you! I cannot imagine having to do this all the time!) I try to talk calmly and quietly to her in her ear with her on my lap while Chris gives her the injection in her upper thigh. She screams and cries, and looks at us in horror while our hearts shatter into a thousand pieces. Once the 5 second shot is over, she is still crying but repeating our words to her “I so brave, I did grea job!” I pick her up, hugging her tightly affirming she did indeed do a FANTASTIC job, and carry her into her room to put her pjs on for bed, making a big deal that there are princesses on her pj bottoms! Once she is in her pjs, her tears subside and she is happy to pick out books for us to read to her before bed. Thankfully these shots are 4 days on, 3 days off. The last day that we will ever have to give her this chemo injection is tomorrow! (I just realized that! I might just make a poster for a picture to celebrate another milestone is over in this journey for tomorrow!)
Friday March 28th, I drove K to the cancer clinic to get her chemo injection done by nurse Mary and pick up the injection for the following day that we would need to give her. Clearly the years of experience helped, b/c K only cried for a total of about 5 seconds with the shot, and then was excited to hear we could go home. No port access, so she was happy! Later that day she was running with the dogs in the yard, and showing Aunt Sherry (who came to visit) her chalkboard drawing skills. The girl just amazes me!
K started a new drug last week. Every night, we crush up her new pill called Thoiguanine, (which is known to stop the growth of cancer cells) dissolve it in warm water, and add cherry syrup. Kaylee surprises nurses and us at how well she takes any medicine thrown her way. We are reminded daily how thankful we are that giving her medication is never a battle!
The only day that was somewhat rough was Sunday March 30th. The amazing organization CURE invited Kaylee to join in on a photo shoot for their annual campaign material. The only problem was the photo shoot was scheduled at her normal naptime. She also refused to eat much at all that morning. So, by the time we got to the photo shoot, we had a very tired and cranky two year old. We packed a cooler full of snacks for her, but she didn’t want anything. She was thrilled this was being done at a playground, and we recognized some people from our hospital stays. K did great during her individual pictures, but we apologetically pulled her out of the group shot when she became a hysterical mess, and explained that she was done for the day. CURE was such an amazing source of help to us during all of those days in the hospital that we wished this had gone better. She fell asleep in the car within 5 minutes of leaving.
Monday& Tuesday Kaylee was dancing up a storm, a tornado of activity. I was able to capture her on video dancing and singing to a song in the movie Frozen. We had friends over for dinner. One of my best friends; Jessica, and her family had just moved here from California. Jessica is who I talked to late at night almost every night we were at the hospital. She, her husband Dan, and their 3 boys have been such an encouragement and support to us these last 7 months, and I cannot even describe what a Godsend it is to have them living close to us now! We were so happy to have them over for dinner! Kaylee adores their three boys, and she smiled, laughed and played with them well past her bedtime.
We were up at 6 am the next morning (April 2nd) for sedation and chemo at the clinic by 8am. This time things went rather quick, which is always good. I always have such a strange anxiety every single time she is sedated. I can repeat scripture all day but there will always be a fear there. Luckily, there is never more than a 5-10 min wait before we can go back in her room and wait for her to wake up. As soon as K woke up, the nurse pushed the chemo into K’s port line, and then we just had to de-access her and we could go home! K did better with this b/c the nurse was able to pull the adhesive off the port faster b/c it hadn’t been on that long.
When we got home, K took a good nap when Chris left to go back to work. She woke up happy and played hard until dinner! (Still amazes me what a rock-solid fighter she is!)
The following day was a packed day of family, friends visiting and a play date in between. Friday April 4th, it was back to chemo. I was on my own with K, so I was so happy to run into our friends at the clinic! Sweet Kayla and her fabulous mom; Maureen were there. (You can follow Kayla’s progress on her Facebook page Cowgirl Strong For Kayla! She is a rock star and almost done with her cancer treatment!) K immediately gave Kayla a hug (these two have had a connection from the first time they met at the clinic, and (back In November) Kayla chose Kaylee as a recipient of a TeamSummer.org gift of her own IPod Touch! (That gift has saved my life on chemo days! There still aren’t enough thank yous for that!) The clinic was slammed that day so for Kaylee to get her 1 chemo shot took two hours. Nurse Karen let Kaylee pick out a present from the toy closet when she was done. K was ecstatic to get a light up princess wand that she played with the entire ride home. :>
Because this has taken me so long to post, I am going to stop this post here, and begin a new one (because Sunday April 6th, was such a tough night, I know it might be another long one.) So I will try to write a post from April 6th- today April 10th tonight.
Thank you for all your prayers for K. She would not be doing as well as she is without those, and we are forever grateful for y’all to care enough about her to read through my ramblings!!
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 **