Sept 7th 2014
Duffy (K’s mom) blogging
Whew, almost another 3 weeks have gone by without an update on how Kaylee is doing, so I will try to get caught up without another 4 page essay but you are warned~ my attention deficit is off the charts today, so I may be all over the place.
I last left off the night before K’s August sedation and chemo. Her chemo appt was on Aug 18th. Chris and I managed to wake up to our early alarms despite being awake far too late the night before. We left 15 min earlier than we normally do, but somehow wound up in the world’s worst Atlanta traffic, and were almost 20 min late for K’s chemo appt, pushing her back to be the 4th to be sedated for the morning. She was not thrilled and kept asking for food or water and it hurt my heart to have to keep saying “in just a little bit honey, you can eat.” I would rinse off her paci in hopes of quenching a bit of her thirst while we waited. Once we had her blood drawn, we learned that although her counts dropped a bit since her labs, they were all still good numbers. As always, the hardest part is seeing her once the propofol has drugged her and handing her over to the Dr and nurses. That’s my little girl in their hands, and each time I find myself fighting back tears having to walk away & wait to hear we can come back in to see her. About 10 minutes later, we were able to go back in. The Dr’s said everything went fine but the anesthesiologist had to give her a bit extra propofol to keep her sedated. (They try to keep her sedated long enough for the chemo they have inserted in her spine to stay in her spine. If she tried to sit up before then it can cause an extremely painful “chemo headache” for her.) After the nurse started K on her Vincristine chemo through her port, K woke up super drugged & slurring her words. We were able to sit her up and man, she was out of it. She was waving her hands in front her face and giggling as we were pulling the super sticky stickers off her that monitor her heart rate (and usually cause her to kick and scream while we do it.) The nurse was able to de-access K without her even being aware what was really going on. She would sternly look at the nurse and say “stoppppp dat….dat sticky”, and then laugh at her funny joke. Chris and I picked out her toy for her since she wanted to open and close the toy cabinet multiple times (thinking it was hilarious) instead of picking out a toy which is usually her favorite part of a chemo day. We got K’s monthly medication calendar from the Dr before heading home a bit before lunchtime, and K seemed back to normal by the time we got home.
Kaylee started steroids that evening, and we once again had a week of very little sleep. She doesn’t sleep well when she takes steroids (this also includes napping) so emotional outbursts are many, and the girl could eat around the clock if I let her. The steroid week was quite possibly the longest week of my life b/c Chris’s company was moving warehouses, so he worked until 10 pm or later every night, and through the weekend. We follow Kaylee’s medication calendar religiously, and Chris usually handles her nighttime chemo meds, but since he was working late that week, I was putting them together. I just happened to read the bottle of her Methotrexate that said in bold “DO NOT TAKE ON WEEK OF SPINAL TAP. I looked back at the calendar that had her scheduled to take Methotrexate that night. She had her spinal tap on Monday. This was Friday. I left a msg for the Dr on call at the clinic, withheld the Methotrexate, and only gave K the meds I knew we always give her before her bath time. The Dr on call called me back after pulling up K’s file. He said ‘hmmm, I see here that it does in fact say on your calendar to give that Methotrexate to her, but you didn’t right?” I said “No way, the bottle of the medication clearly states not to.” The Dr said “yeah, do Not give that to her! Giving her Methotrexate chemo this soon after Methotrexate was inserted in her spine would not be ok. It could make her very sick. She is not supposed to be given that medication until next week. I will make a note to call the Leukemia team tmwr to make them aware of this error, and will be notifying your daughter’s oncologist tonight.” I thanked the Dr, but was fuming mad. Not at him, at the Dr that made out the calendar. After putting K to bed, I just became more angry thinking about it.
The next morning, the same Dr on call, called to let me know that everyone was made aware of the mistake, and that I did the right thing by calling. (He was so nice.) In my anger (that I still stand behind) I told him “please note in her chart, that Dr **** (name withheld) is no longer allowed to be present in the room for any clinic treatment Kaylee has. That if that Dr is assigned to Kaylee at any point, she will be asked to leave and to send another Dr in. This was not just any medication error; it was a chemo error that could’ve landed my 2 year old in the hospital. I know she is a relatively new Dr, and because of that she should be even more careful. Everyone makes mistakes, but Kaylee will not be at the tail end of one of those mistakes again. (Mama Bear mode.)
Kaylee was doing great. We had play dates planned almost every morning and friends visiting quite a bit & she loved it. One thing that stuck with her though, is the afternoon we went to visit her great grandparent’s house to film Pop-Pop’s Ice bucket challenge video for ALS awareness. She thought it was hilarious, and she wanted to see every video on my phone of people doing ice bucket challenges after that. Pretty soon she would play at her water table on the deck and she would smile and yell “Ice Bucket Challenge Mommy!” and pour a cup of water over herself and laugh! The first time it happened was when my brother was over for his Birthday, and we all cracked up! Now, I have to remind her everyday not to do it (unless of course it is right before bath time, bc then it is fine. Lol)
K has had 2 rough days the past few weeks. Both involved her getting sick on me and herself, but she always rebounded by that afternoon or the next day, and she has not had a fever, praise God, so I know it’s the constant poison going in her little body every day.
This brings us to lab day which was on Sept 4th. Although K cried getting ready to get her finger pricked, she quickly smiled for a picture bc her favorite lab tech Denise was doing K’s tests. When I take to get her labs done, we always wind up waiting 2 days to hear results, so imagine our surprise when the Dr called both Chris’s and my phone that night while we were doing K’s bath/bedtime routine, so neither of us picked up the call from the unknown number. After Chris kissed K goodnight and left the room, and I was doing my nightly prayer with her, he returned less than a minute later looking alarmed. He re-played his voicemail on speaker and I heard the Dr saying we needed to call her back as soon as possible to discuss K’s labs they had received. First of all, we have never gotten a call at night from a Dr unless it was bad news. Second of all, what could possibly be so bad that we would need to call back so quickly? Well, naturally I went into semi-panic, don’t let Kaylee see mode, and told Chris I would be downstairs soon, so we could call together. I prayed with Kaylee filled with fear about what the Dr could possibly say.I studied K’s face and said “honey, are you ok? “ Kaylee so preciously said “mommy, I fine. I take an all night nap!” (Love that child!)
After I put her down in her crib, Chris and I called the Dr together. We both breathed a huge sigh of relief that the Dr was only calling so that she would catch us before we gave K her chemo that night. K is apparently Neutropenic again (Severely low ANC cells, making her really susceptible to getting sick) and she is back on fever watch. Ugh. We had already given Kaylee her meds that night, so the Dr said they were suspending her chemo until her next clinic appt to give her body a chance to recharge. The Dr also would like K to get labs done again this week to see if being on chemo-suspension has helped her counts bc her clinic appt is set for Monday the 15th. Keeping it real, I totally got choked up after hanging up the phone because I had let my mind wander into worst case scenario ideas while the call humbled me at the same time. I am reminded so often that none of this is in our control. This is all God, He….HAS…..GOT….THIS. He Made Kaylee, every inch of her, and we know He will heal her, we believe He will heal her, but in that few minutes of not knowing what her labs could have revealed, I let fear take control. Random fact, did you know the phrases “have no fear, fear not, or do not worry” are in the Bible over 300 times? True story. So, operation memorize some of those scriptures are going on my to do list!
So, as this blog is getting longer than usual, I will tell you our prayer requests for the time being. We are praying for K’s white blood cells to make a triumphant return, that she will not get any virus or sickness while those white cells are building. We are praying for a great week ahead, so that she can enjoy the short time she has being off chemo. We are praying for safe travels as my mom and stepdad make their way up here to visit (super excited about that by the way.) We are thankful that she has only felt crummy a few days so far. We are thankful that she has such a happy, energetic spirit while going through this battle. We are thankful that this terrible medication is in fact doing its job,and that this battle will be won soon (she is half way there!) Above all, we are thankful that God chose us to be her parents!
This month of September is Childhood Cancer Awareness. Although we are always “aware,” we are thankful she is still here with us, and still fighting each and every day. I read a story this past week about a child who was the same age as K with the same diagnosis and she passed away last year. It took my breath away & the strength and courage this family continues to have after losing their daughter is inspiring. ALL Leukemia does have a 83-85% chance success rate, but I never think about the 15% that do not make it. So, we are reminded everyday to be so incredibly thankful that she is doing so well!
If you have a moment this week, please visit the CURE organization website (www.curechildhoodcancer.org) Kaylee is one the ’CURE’s Kids Conquer Cancer.’ Scroll until you see her picture by the date of September 25th. You can see her story as well. Each family of each child is attempting to raise $1000 or more for CURE all going specifically to childhood cancer research. Research is the only way we can find a cure!! If you feel inclined to donate, please specify it is honor of Kaylee C. What better way to give meaning to Childhood Cancer Awareness Month! CURE is one of the best organizations to donate to if you are looking for a legit charity.
I will also be updating this week with details of what we will DO for Childhood Cancer Awareness Month. We have a big event planned that will be going on September 28th and I cannot wait to share the details & the flyer!
Until then, thank you for reading about our life and keeping up with how Kaylee is doing! Your prayers mean the world to us!
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.”
Kaylee doing her ‘ice bucket challenge at her water table.