(it is late, grammar is terrible and I add commas everywhere. You are warned ;> )
If you had asked me a week ago, if I thought we would still be home and not in the hospital at this point, I probably would have said “Not a chance, so please pray!” We are thanking God we are still home and in the meantime have become ‘those parents’ that call the clinic with every concern we have. I am going by the idea of ‘better to be safe than sorry!’ I will tell you about our week and try not to include ALL of the ‘debbie downer’ things that occurred. Monday was Labor Day, so Kaylee was scheduled to be sedated to get a lumbar puncture and a bone marrow aspiration on Wednesday Sept 4th. Side note for those that don’t know; a Lumbar puncture (otherwise known as a spinal tap) is done to take a sample of K’s cerebrospinal fluid. The Dr and a pathologist check out the fluid to analyze her white blood cells, protein and bacteria, and to check for abnormal cells (leukemia cells.). This is also done to deliver Chemo into her spine, which was done. The Bone Marrow aspiration is where the Dr takes out a small amount of liquid marrow from inside the bone, to examine the bone marrow (the spongy liquid part of the bone where blood cells are made) and to check for leukemia cells.
So Chris and I were up late talking on Tuesday night about the following day. We woke up at 6am to our alarms, and both of us turned our alarms off thinking the other had just hit snooze. So, Chris woke me up yelling “Duff! Its 7am! We will be so late! Get dressed! No time for makeup!” I jumped out of bed and got ready in 8 minutes (thank you Lord I had everyone’s outfit laid out the night before!) We knew there was no way out of being super late when it took us a half hour to make it just two exits south of our neighborhood! The clinic assured us they would squeeze K’s appt in, and not to worry. I felt horrible for Kaylee who could not drink anything, and was probably starving the whole way there (She couldn’t eat before a ‘surgical procedure’ but I totally gave her a few swigs of water b/c I felt so bad for her.) So, we apologetically arrived an hour late (Atlanta morning traffic is brutal!) and Chris’s mom was waiting for us at the entrance. Once into the Cancer clinic, we were taken into the Dr’s office looking room that always starts the tears for Kaylee. She cried, kicked and screamed loudly. I automatically don’t like the nurse that has to prick her finger (even though that is her job) and try to cuddle K as much as possible. Once that was over, I tried to calm K down before going into the room she normally gets chemo, to wait for her blood results & to meet with the Dr before her procedure. (Chris kept the tears at a minimum by sliding back and forth in a chair with her, which she thought was hysterical.) Every one of her blood counts were up and look pretty good (answered prayer!) They had to access her port which caused more crying and screaming out of Kaylee (poor baby.)
She was cleared for her procedure and the Dr let us hold K until she was sedated (at least I was prepared this time for her head to bob back and her eyes to go up like they did, but it is still startling to see.) we kissed her cheek and anxiously waited for the procedure to be over. They allowed us back in the room while she was still asleep to let us sit with her to wait for her to wake up. They let us know she did great and they were able to get good, clean samples. They monitored her for a bit once she woke up, and once we were allowed to, we immediately handed her juice and crackers that she scarfed down. The Nurse said we would be told the results of the test late Friday afternoon or at the latest Monday morning by K’s Oncologist. By the time we got to a Chick-Fil-A closer to home, K had downed 2 juice boxes, a cup of water and two individual sized bags of crackers. She was just as happy once I gave her chicken nuggets. Once we arrived home, Chris needed to head to work and my amazing friends were on their way to visit, and help me keep K happy. :> She loves visitors and got to stare at baby Jace again, which she seems to enjoy. My friend, Karen was able to witness a normal night for us when she came by that evening. After I gave K a bath, Chris (thankfully) handled K’s routine of waking up multiple times in the early evening so I could feel a bit of normalcy by catching up with a friend over a glass of wine on our back porch. (The waking up endless amount of times throughout the night still continues and according to K’s Oncologist, we are not to do the ‘Cry it out method’ for a while, plus we feel too bad for her having to go thru all this that we probably wouldn’t try that yet anyway.)
Yesterday was one of the harder days. Although we were blessed by a short visit with ‘Aunt Jenn’ who Kaylee adores, Kaylee had bouts of fits throughout the day, and refused to nap. Chris had to use my car so we were stuck at the house, and he was scheduled for a work dinner which would put me doing the only parent routine for 13 hours straight, which was absolutely exhausting to put it nicely. By nighttime, Kaylee woke up so often, that we finally just gave up at 1am and put her in bed with us where she slept quietly until 7:30 this morning.
I woke up knowing we would find out the results of K’s tests and went about our day making sure my phone was attached to me and charged. K kept me on my toes with a bit of worry by barely eating enough to stay alive, and no matter what I offered she wasn’t interested. We were blessed to have our friend visit with her newborn baby girl, which kept K captivated. :> Once our friends left and K was taking a late afternoon nap, I made a call to the clinic to ask about her eating, and if the results from her testing were in. K’s oncologist called me back (and it might be better to try to just do a shortened version of what was said.) Dr: “Hi Duffy! Before I answer the questions you have, I want to tell you that K’s tests results are not in yet. I guess with the Holiday, it backed up getting the results at a normal time, so u won’t get to hear about that until Monday between 12:00-1:30 ish.” (Insert me trying to hide my disappointment.) “This is not bad news, it doesn’t mean it is good news…we just haven’t received them yet. Either way Kaylee is scheduled for Chemo and another sedation procedure for Friday Sept 13th. “ Me: Friday the 13th? Yikes… How often will she be sedated to get a lumbar puncture and a Bone Marrow Aspiration?” Dr: “Oh she will get sedated weekly for these procedures for the entire phase 2 of her Cancer treatment.” (WHAT?! ) Dr: “We monitor her blood cells every week at this part of treatment to make sure Leukemia cells aren’t coming back, and chemo is doing what it should, so although I am sure this sounds like a lot, it is normal procedure.” (She went on to tell me as long as K is drinking enough, that her not eating isn’t anything to worry about. Chemo reduces appetite, and with her weekly weigh in’s at the clinic, they keep a close eye on her weight gain or loss.) So, it is a bummer that we have to wait all weekend to hear any news, but we know that no matter what her test results reveal, K will still need to do chemo for at least a year ½. However, getting those results will let us know if she is reacting well to treatment. So I will look forward to hearing from K’s Dr on Monday afternoon!
K woke up from her nap happy and wanting “Cho” (somehow this has become her word for “shredded cheese please” (no idea)) Not caring what she ate as long as she was eating, I refilled her small bowl of “Cho” 3 times in 30 minutes (thank you Lord, for just making her hungry for SOMETHING) while she watched Super Why that I dvr’d for her (and I started on dinner.) I want to reassure people that unlike my last blog entry, I usually make good dinners, LoL! A few people asked us if they needed to make dinner for us, after reading the last blog, which was so nice, but I honestly can cook normal dinners. :> (For ex: Tonight I made Baked Crescent Chicken Roll Ups, sautéed zucchini, squash& mushrooms, and herbed pasta.) Kaylee refused everything (the pasta used to be her favorite) but a few sips of her organic fruit puree pouch I provided with dinner and her cup of milk. After an hour of playing with Chris and me after dinner, she started her tired cry. I gave her a bath, we did story time and since I have started writing this, she has woken up crying 3 times. The nurse suggested giving her Benadryl to allow her a night of sleep (and us as well!) so we gave her some at 10:00.
So our prayer requests this week: That God will heal Kaylee, that He will increase her appetite, take her pain away and allow all of us to rest. (My mother and I are still praying for no hair loss from the chemo.) We are praying for GREAT news on Monday, and we pray for the Dr’s and nurses at the Scottish Rite Clinic. We are so incredibly thankful for answered prayers this week, and continue to lean on the Lord to help us grasp all new information that comes our way, and to stay strong for our little girl! We are extremely grateful for supporters buying the PRAY4K t-shirts, and reading our blog and updates! We read every comment on these blogs (and Facebook) and are thankful for all the prayers for Kaylee and us! I cannot stress enough how thankful we are! Keep those prayers going please…? Kaylee needs all the prayers she can get. Share her story, spread it around. The more prayers, the better! And during our daily busy lives, we continue to remind ourselves, Gods got this!!!
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.”
4 thoughts on “Procedures and waiting….”
Keeping you in my prayers, as always! Thank you for being as detailed as you can be in your blog! You are all strong & I will continue to pray for that strength & healing for Kaylee 😉
Duffy and Chris,
You two are truly inspirational! I too love reading every detail. I saw something on FB yesterday and thought of you guys, it says ” If God brings you to it, God will lead you through it.” I pray for awesome results on Monday for Kaylee!!
Wanted you to know that you are constantly in my prayers. You have shown so much strength and I am in awe. I pray daily for
Kaylee and for both of you. Let me know if there is anything else I can do.
Your writting is beautiful, I know its got to be tough to do. God’s holding your family in his hand.