1:10 am
Kaylee is vomiting from chemo injection! Please pray!!!
Called Dr and Chris is picking up Zofran , until then I’m with a vomiting child.

Duffy’s Entry:

This week was a harder week due to K not sleeping much throughout the night, meaning we didn’t sleep much any night this week. She also barely ate anything all week but “Cho” (her word for cheese) at every meal. By Friday, I was maybe running on 20 hours of sleep total, and stressed out with her barely eating, and couldn’t even blog an update or prayer request. We were flat out worn out! I had two small breakdowns this week, both of which were due to brushing her hair in the morning and clumps of her hair coming off of the brush. I am relentless in prayer about this, but am not ignorant to the fact that chemo will cause this. It just kills me, and is still one of the things I have a really hard time seeing.

I was reading all of the information the Cancer Clinic had given us on Thursday evening and couldn’t get over the side effects page. Kaylee had a procedure scheduled for Friday morning. If you read our last blog post, you would know that getting up early isn’t our strong suit. By the grace of God, we woke up to our alarms (after 4 hours of sleep) at 6am, and quickly got ready to go to the clinic. Sweet Kaylee seemed quite confused, but was a great little passenger. We arrived on time and immediately were taken back to the vitals room. K again screamed bloody murder while I held her and tried to keep her calm when they pricked her finger. Once that was over we were taken to the sedation room to wait for K’s oncologist to go over her blood results, tap into her port, and to sign paperwork before her procedure. Because K only got a shot of chemo in her spine last week, it gave her a week for her blood cells to become quite stable. It was such a blessing to hear that her ANC count (white blood cells that fight off infection) was 800! That is a HUGE improvement (remember when we were in the hospital and It was 3?) Her platelet count was… well all her counts were awesome! If I had known this during the week, I so would have done more play dates, or gone out more with K. At this point one of the nurses (knowing K’s obsession with Elmo) gave us an amazing gift from CURE. She said “After this next phase of chemo, she won’t be able to use this, so this weekend is the only safe time she can use this gift.” We opened the envelope to find tickets to Sesame Street Live at Phillips Arena! With wide eyes, I said “She… can be… around crowds? She‘ll be ok to go there? Oh my gosh this is amazing!” The nurse said “Her blood counts are fantastic, but this next phase of chemo will crush those down, so take this weekend to get her out and about before she can’t again.” We told K she would be able to see Elmo and she smiled and said “Emmo!”

We again were able to hold K while she was being sedated and then laid her on the table, kissed her cheek, and went to the waiting area. For some reason, this sedation seemed to take so much longer, and I could hear every second tick off the clock above my head. They let us come back in after they were done with her lumbar puncture, to wait for her to wake up from sedation and told us they were able to get a good, clean sample. She woke up crying, and I immediately handed her apple juice which she chugged down instantly and smiled (sweet baby.) She was happily snacking on crackers and drinking more juice when we were taken to her chemo room for the day. For those that don’t know, Phase 2 started this week and she would be given 4 new chemo treatments, and would take almost all day to get thru them. This is why God just amazes me. —à Once our daughter finished her first chemo treatment (and lunch in the room with us) she was ready to go play in the kid’s playroom! There she was, hooked up to her second chemo treatment of the day and dancing to an Itsy Bitsy Spider game the nurse showed her, and happily playing with a kid kitchen! The crud she had streaming into her body was supposed to make her tired and feel like crap….and there she was, having a ball with all sorts of ‘new toys’ and laughing! Amazing! God is awesome!

While K was still happily playing, our nurse came over to us to tell us to make sure we got our lesson on her daily chemo injection we would need to give Kaylee this week. (Say what?!!) I said “Wait, her what? I can’t do that, won’t do that to her…You want me to give her a shot every day?? What is our other option?” The nurse said “Driving to the clinic every day to get her injection.”(Crap!) Chris knows I hate needles, and said he’d do the shots and I would be the one holding her. So we went through this shot lesson a few times with the nurse before Chris felt comfortable. We also went over all the new meds that would need to be crushed, dissolved and given to Kaylee at home every day, so we learned quite a bit. By the time K was done with her four chemo treatments, it was almost 4:00. She was worn out by the treatments and napped the whole way home.

When K’s bedtime rolled around, we gave her a bath, and before story time, I came up with an idea. I bribed my child. (don’t judge, I was sleep deprived!) I am one of those annoying moms who truly believe my toddler understands me when I have a talk with her. Me: Kaylee, guess what? You can meet Elmo tomorrow! Kaylee: (looking excited) Emmo?! Me: Yes, Elmo! Butttttt, in order to see Elmo tomorrow you have to sleep all night in your crib, and not wake mommy or daddy up tonight. If you wake mommy or daddy up tonight, we can’t go see Elmo because we will be too tired. Kaylee (looking down and quietly says “Emmo…” Me: So tonight you get a good night’s sleep in your crib, and when you wake up in the morning, we will go see Elmo! Remember though, no waking up crying tonight.” Kaylee: (face lit up now) “Emmo!” and she hugs me. (See? She totally understood me! LOL) Kaylee slept in her crib until 9:45am (!!!) and didn’t wake up once throughout the night! We finally got a good night of sleep!! Praise God! I was ecstatic when I woke up and told her what an awesome job she did, and that we would see Elmo today.

We had a busy morning, and Kaylee took a nap on our way to Phillips Arena. We had time to get her an Elmo shirt and some lunch before the show started (she refused lunch. :<) I have never seen K so excited before! This girl was dancing to the music, pointing out Sesame Street characters to Chris and me and clapping. She loved it and I am forever grateful to Cure for those tickets! By the time we left, we heard there was a Disney Junior tour going on down the street at Centennial Park, so we walked over to check it out. Apparently kids could get pictures with Doc McStuffins, and there was a line a mile long. We bypassed the line and took K to see the Fountain of Rings instead, where a ton of kids were happily playing in the water fountains in this warm Atlanta weather. She loved holding on to Chris, getting close enough to touch the water and giggled when the fountains would shut off and magically come back on unexpectedly. Again, a huge praise to God that she felt so good all day, and that we were able to have such a happy family memory! I didn’t even stress out that all she wanted for dinner was cheese. I was just so happy about what a great day she had! I knew we would have to do the chemo injection tonight and I tried to put it off as long as possible. I tried to have a talk with her about what we had to do after her bath time.

After her bath, Chris got her shot ready and I held her in my lap trying to distract her with videos of herself on my phone. There are no words… this was AWFUL. Here she had this great day, and then we had to stick a needle of chemo in her outer thigh. We were not allowed to numb it either. She screamed, cried, and kicked while I tried to hold her still. As soon as we got her band aid on, she was still screaming and crying and clinging to my neck. We both felt horrible for her. We got her ready for bed, and she finally calmed down for story time, and is (for now) fast asleep in her crib.

Next Friday, the 21^st, she will be sedated again to get another lumbar puncture (to check for any leukemia cells creeping back in) and all day chemo treatments. Please keep her in your thoughts and prayers this week. We will need to do these horrible injections daily too (poor baby girl!)

We are thanking God for an incredible day and showing us how he can heal our little fighter! We are so thankful that her test results proved that the chemo was working and few leukemia cells were evident in her blood sample last week. We are praying for a better appetite, for chemo not to affect her, and for her to fearlessly fight on! We are so thankful that people are still buying the PRAY4K shirts, and taking pictures wearing them! (We love seeing those!) We are thankful that so many people are fighting with and praying for K & us on a daily basis. It is evident in her behavior and test results that God is listening to your prayers! We are standing firm on the thought that Kaylee WILL beat this! There is no other option that we will allow in our brain! Thank you for sharing K’s story and spreading the word to your churches, bible studies and friends! We need every single one of those prayers! THANK YOU!! We continue to remind ourselves, Gods got this!!

Have a great week!

Note: to see our updated pictures, you can look for Kaylees battle on Instagram :>

#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.”

Duffy blogging

(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 4^th. 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 13^th. “ Me: Friday the 13^th? 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.”

#PRAY4K!

Duffy blogging

Prayer & Wine

So before I get into today, I thought I would share bits and pieces of yesterday. Yesterday K woke up at 8am (in her crib.) The day started out with me thinking my daughter was a rock star. She ate her breakfast, and then it was like a switch went off at about 10am. She was throwing a fit…not like a regular child fit; this was a steaming mad about nothing raging fit with tears, arching and screaming. I did the best I could to keep her somewhat emotionally under control until thankfully nap time came around. I knew two of my friends were coming over to visit and meet about these PRAY4K bracelets my friend (Karen) made for our family. I called the clinic concerned about K, where they told me it might not just be chemo that was making her freak out. The Dr. said that since it has been a week that she has been off steroids, her body was going thru a normal withdrawal that they should have warned us about while we were at the hospital (they probably did, but I think my brain is at capacity with new information, as you can imagine.) Apparently the withdrawal symptoms include emotional outbursts, immense pain in the bones and joints (as does one of her chemo treatments~ excellent) and sleeplessness. She said to use the Hydra codeine that she was prescribed, or if I didn’t feel comfortable doing that yet, to try Tylenol. K took a total of a 30 min nap and I gave her Children’s Tylenol. My friend Leslie was visiting with her 6 week old baby boy which seemed to make the problems K had previously, vanish. (Maybe it was the Tylenol too, who knows.) At any rate, K ate a mini lunch, while staring at baby Jace. Karen (or as I will now forever call her; The Baby Whisperer) came over too and after we checked out the bracelets, she worked from our house and helped me keep K entertained. My child (who has always had separation anxiety) was now reaching for Karen to pick her up & and giving her kisses, reaching for Leslie to hold her and watching Jace sleep in her old rocker I brought up from the basement. . This was awesome for me to see, and she was happy for the duration of their visit until Chris came home from work! She was toddler-like fussy while we were getting dinner ready. Chris’s Uncle and my brother came over for dinner and K was giggling and eating like a champ! She had a ball with them. Bedtime was a disaster which included her hurling the books we were trying to read her during story-time, arching her back so she wouldn’t sit on my lap, and crying.😥 She finally settled down & went to bed. At 3 am I was woken up by a blood curdling scream coming from the monitor. I went to calm K down who wouldn’t go back in her crib, so I took her to our room, where she kept me and her very sleepy daddy awake until 5:30am. She was only happy cuddling with him and as soon as he would drift off to sleep she would laugh and poke him in the eye saying “Eye!” (Not funny at 4 in the morning.) I finally used the loud ‘mom voice’ saying “Kaylee, go to bed, it is night night time!” to which she smiled and said “Nigh Nigh” and fell asleep rather quickly.

That brings us to today.

She and I woke up later than usual, she refused her breakfast and milk, she didn’t want to play with her toys, she didn’t want me to hold her…she wanted to cry. Her Godmother, Jenn came by to visit after K had fit # 3 of the day. Kaylee again was fine with a visitor (what is going on here?) And again shocked me by reaching for Jen to pick her up to give her a hug. Every time K got a bit fussy, Jenn and I distracted her. K finally ate ½ a serving of Gerber Spaghetti. & some milk. Jenn soon had to leave to go to work, and no more than 30 minutes after sweet goodbyes, K had another fit when I asked her if she wanted a Popsicle (? I know, makes no sense!)

At around 1:30, K just kind of broke down. This was a screaming cry that I could not soothe. I stood and held her trying to calm her down. It soon turned into her pain cry mixed with flailing her arms and arching her back causing her to scream/ cry even louder. I knew I had given her Children’s Tylenol at 11am and could not give her anything else for another few hours, so I tried everything I could think of to distract her. Finally, I carried her upstairs, turned her sound machine on, closed her drapes and tried to rock her. She was still arching and screaming. I just held her and loudly prayed over her, begging God to take her pain away, with no idea left of what to do. I felt absolutely helpless, and cannot describe the hatred that I felt towards whatever was making her hurt like this! She finally cried herself to sleep clutching my neck. I laid her down in her crib, gave her a kiss on her cheek, and walked downstairs. I stood in the kitchen, and let the day sink in and just sobbed while writing a begging plea to Facebook for people to pray. I read my friends “praying” comments while tears rolled down my face. I called my mother while I was still a still a sobbing mess of tears. She was with her friend (and prayer warrior) Lucy and they both prayed with me over the phone for Kaylee, me and Chris. K napped for an hour ½, and I greeted her happily while making her giggle with my dorky dances to The Lumineers, determined to keep her smiling for the remainder of the day We facetimed with Grandpa and Grandma while she (only) ate ½ a peanut butter cracker, ½ an organic fruit puree pouch and drank some of the Kids Boost I supplemented for her milk.

I had every intention of cooking a good dinner, but I was distracting Kaylee outside & by the time dinner time rolled around, I didn’t want to take K to the grocery store when it was so busy. I looked in our freezer and texted Chris with “Ummm so I have to grocery shop tmwr…does Chicken Tenders with glazed carrots and steamed veggies sound terrible?” God bless my husband who texted back with “sounds fine, be home soon.” K refused everything at dinner, made a huge fuss & pointed to the Easy Mac in the pantry, so Chris got that ready and she ate 2 bites and wouldn’t eat anymore.(what is she surviving on…air??) Chris was able to witness a fit K had when he tried to get her to eat some applesauce, and said “not an easy day with her, huh?” I gave her a bath hoping to sooth her aching muscles and horrible diaper rash chemo gave her (the nurse saw it on Monday and confirmed chemo does this~ ugh.). She did great during story time and gave Chris a quick “Nigh Nigh” kiss and cuddled into me and fell asleep rather quickly. I transferred her to her crib, walked downstairs and poured myself a long overdue glass of wine! (I didn’t mean for this to turn from a blog into like a diary entry here, but trying to give you a glimpse of the day.)

So…THANK YOU to everyone who prayed for her today during my meltdown, and thank you to the people that are continuing to pray. Today was emotionally exhausting & Cancer sucks. I sound like a broken record, but I truly believe prayers can move mountains, and have seen Kaylee thrive off your prayers, so we still so badly need those. I am so thankful she has not had a fever, and thankful that we are still home. I am thankful people are still reading our blog, thankful that people are ordering our Pray4K t-shirts to show their support, and thankful people care enough to pray for our baby girl! No child should ever have to go through this! Our HUGE prayer is for September 4^th (next Wednesday.) She will be going to the Scottish Rite clinic and will be sedated to get a bone marrow aspiration & a lumbar puncture to extract spinal fluid. Both of these procedures are to test for leukemia cells (we are praying for 0 leukemia cells!) This fight is far from over, and our little fighter is getting worn out, so I ask that you pray that God will reinvigorate K with more energy, a better appetite, and fewer tears. That God will heal her completely, and allow all of us to get the rest that we need!

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.”

#PRAY4K

We get to….go home?!

Blog by Duffy:

Wow! What a change from my last blog (that we failed to upload on time!) Saturday morning we were shocked to meet with Dr Lew (love him) when he informed us that her counts weren’t SO low that we couldn’t try to go home again! I said, “But she gets chemo on Monday and Dr B said it would be silly to send us home, only to come back Tuesday with her having a fever.” He said “We don’t know that the fever was due to Chemo, we just know it wasn’t an infection. Her counts are going up and will continue to go up if all goes well, and I think you both would agree that Kaylee, and y’all  would do much better being able to go home for a few days. So, with that I am discharging you. She will get her antibiotics through her port today and then you can head home.”  Dr Lew is very respected at CHOA, he resides on the Board of Children’s Oncology, and he is super nice! Kaylee never cries when he comes around, so I know that must mean something too ;>

What an answer to prayer though! I was really starting to miss being home, and feeling kind of in a rut, and was so let down when we were told we’d have to stay in the hospital until Tuesday! Then just 24 hours later we end up getting to go home? Heck yeah! Praise God! We were blessed with my Mom and Ron to help us pack up the car with our hospital room stuff, and Chris’s Aunt and Uncle had dropped by to show us that the Pray4K shirts had come in (as well as to make K smile and laugh~ she loves them!)! I am so pleased with the results of the shirts, and as of TONIGHT we will be offering them for sale! The proceeds to these shirts will be going towards Kaylee’s ongoing treatment. Kaylee was sporting her shirt as we were about leave the hospital causing one of our favorite nurses to ask if she could buy one, so that was the first one we sold. J (Thank you to Brandy Brown Craig for the awesome design of the shirts, and to The Cannon family for getting the first batch of the shirts done for us!)

We had a much different reaction from K this time going home. Although at first she was clinging to me, she soon wiggled out of my arms to go play with her toys in her playroom. This was such a relief, and she continued happily playing out on the porch with Grandma and Grandpa so Chris and I could unpack and get somewhat organized at the house. Another prayer request was answered that night as well~ after her bath and story time, I let K doze off in my arms while slightly rocking her and she went to sleep in her crib! I didn’t have to get in the crib to get her to sleep! (After sharing a hospital bed with me every night, this was a huge prayer answered for her to be sleeping in her crib!)

Sunday was bittersweet. Kaylee slept in (she had cried and refused to go back to her crib at 12am, so she slept the rest of the night in our bed.) I was so happy for her to get the rest she needed, but we learned later that morning that my Mom and Ron needed to head back to Florida for business instead of staying until Tuesday as planned. My heart dropped because Kaylee is so happy around them, and they have been such a source of comfort and help to me! Mom and Ron prayed with us for Kaylee before leaving, and I didn’t realize that the day would be a flurry of friends and family visiting after they left, so that helped. Kaylee gave out a ton of smiles and high-fives before taking a short nap in her crib. After dinner, Chris and I gave K a bath and did story time and she again slept in her Crib (this time until 5am! Hey, its progress! Thank you, Lord!)

That brings us to today! Today was Chemo Monday! Kaylee had a good breakfast, seemed in good spirits and without wanting a nap, we headed to the Scottish Rite Clinic. She smiled at the other kids in the waiting room, which was cute. However, this is the section that breaks my heart -à. K is too young to realize what is going on, but she knows once we head into the Dr’s office looking room, that the nurse will take her vitals, and prick her finger to draw blood. So, as soon as we stepped in the office, her little bottom lip started to quiver and all I could do was try to cuddle her and show her videos of herself on my phone, which usually calms her. Hearing her cry out “All done? All done? All doneeeee?” in my lap as tears slid down her face after they pricked her finger made me wish yet again, it was me having to go thru this and not my little girl! Once we were “all done” with that, we were led to the bigger Dr’s office looking room where she gets her chemo. Again we tried to calm her tears, and the amazing nurse gave me a blanket from the heater to wrap around K and me, and she settled down. (Once they tap into her port she doesn’t feel the chemo going in, which is helpful.)  Dr B came in to talk to us about her blood counts. (Check this out prayer warriorsà) He said her blood counts have gone up since our hospital stay! (HUGE prayer answered!) He is very happy with how well she is progressing! Her blood counts are still low enough to easily get an infection, so we still need to be very careful & guarded with choosing places to take her, but so far that is great news!

K took her chemo like the champ that she is, and around 3:45, we were done (she finally took her much needed nap on the way home in Atlanta traffic. (Sweet baby) I’m going to keep it real and tell y’all that it got a bit weird once we arrived home. She was happy for a while and then would all of a sudden be in a mess of tears for no apparent reason. She had a fit at one point when Chris asked her if she wanted some cheese (she usually smiles huge and nods eagerly, so this was confusing.)  We tried to keep her distracted by taking her outside (her happy place) and she laughed when I gave her a few rides on her train, and loved running around the dogs in the backyard. Out of nowhere she would just kind of fall on her bottom to cry. Chris and I took turns scooping her up and comforting her. Bedtime was the most different. Usually getting ready for bed is a simply & easy task. Tonight, she cried about us putting her p.js on and then started laughing while crying (wha?) To get her to sit on my lap to do story time was as easy as bathing an angry cat, but as soon as I started reading her favorite book she calmed right down, snuggled in and randomly reached for Chris to hold her hand while I read.(That part was precious.) So I put her in her crib when she was drowsy and she has been asleep since (Praying she stays asleep!)

So, God has answered a Ton of prayers and we are beyond thankful &convinced it is thanks to all the amazing people praying for her so, THANK YOU! She still needs prayers for no fevers! She still needs prayers for healing! She needs prayers for chemo to not affect her (this can be done!) My mom and I are diligent on praying for no hair loss too (God says to come to Him with ALL of our concerns, so we can pray for no hair loss along with healing! Plus, the Dr’s said that is an impossible request, which makes me want it even more, and only makes me pray harder!!) I am thankful every day I see her smile and eagerly give me a hug and a kiss. She is our everything, our beautiful little girl…our FIGHTER!

Please pray for and with us! Help us help Kaylee Kick Cancer’s Butt!!!!!

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.”

PRAY4K!

**P.S (Chris has set up a pay pal account for the t-shirts for sale along with a picture of the shirt  on the right hand side of this page if you are using a computer. If you read this on your phone, scroll to the bottom to find it) ** THANK YOU!!

Duffy’s Blog
Friday August 23rd

(Chris will be doing his blog soon)

This past week has been kind of tough. I think I hit a wall today. We are kind of secluded in our room due to K’s low blood count. We have only had close family and a friend visit this week, and we are not allowed to take K to the fun kid events they have downstairs every day with the risk of getting her sick. So, it has been me in a room trying to keep her occupied (with a ton of help from my mom & Ron) everyday 24/7. Chris is back to work so he usually gets here about 6:45pm, and by then I am kind of spent. We originally were told we would have to stay here 24 hours, then it was 48 hours, then it was “you’ll be released Friday.” Then it was “you’ll be released Saturday morning.” Today I received the news that “Due to her blood count not rising like it should, along with her hemoglobin being too low, she would not only need a blood transfusion today, but we wouldn’t be discharged until Tuesday afternoon.” Although I kind of figured it would be silly to send us home this wknd only for her to get chemo on Monday and wind up back here Tuesday with a fever, I still wanted to be selfish and go home as a family for one night. Whenever I start to feel like the walls are closing in, I look next to me for my reality check. Our soon to be 18^th month old (tomorrow!) finds some way to smile or laugh almost every day & it seriously puts everything back in perspective! Here is this tiny little dynamite of a girl going thru everything that she shouldn’t possibly ever have to go thru, and she finds a way to smile, therefore putting a smile on every person’s face she encounters along the way! Amazing! What a blessing she is!

So, a few of you have asked how this week has gone and I have to of course include the “See? I told you prayer is awesome” story. So, I noticed K felt very warm the other night, so I took her temperature. Realizing it was a fever (everything is in Celsius here, so it takes a sec for my brain to load the Celsius to Fahrenheit temp) I called the nurse. She came in and took K’s temp, and verified, yes it was a fever. The nurse said they could not give her any medicine unless she still had a fever or a higher temperature after 30 minutes…so what did I do? Um, I took it to Facebook and asked people to PRAY! Well, 35 min later our sweet nurse came in to check K’s temperature (ready to give her Children’s Tylenol) and K’s temp was not only NOT a fever anymore, it was exactly a normal temperature! Now, THAT is a rather cool answer to prayer story people! God is so good!!

Today, we received the good news that her initial fever that brought us back to the hospital must have been a reaction to Chemo b/c the lab work came up negative for a virus or bacterial infection. (Praise God!) We have been eagerly waiting every morning to get her blood results in. She still gets her blood taken every morning at 4 am, and I get a copy of those every morning around 9/10am. Everything is still super low, so we are praying for those numbers to rise. I really didn’t appreciate the Oncologist’s explanation today as why her counts weren’t rising “Well, it seems her bone marrow is just… stupid.” (really? That’s the best answer I could get? Nice, Dr.) He said “Her platelets are starting to rise so it looks like her bone marrow is at least doing that, but we really need to see better results as far as her white blood cells are concerned.”

So, we’ll pray for that ….or better yet, let’s go all out and pray for straight up healing! I remind myself every day God’s got this! He can heal her!

K had a pretty great day today. We knew this morning she would be getting a blood transfusion today, and from past experience we know that she turns into a lightning bolt of energy on days that she gets new blood! She smiled and laughed more than ½ the day and even went outside to the Wishing Pond to spend some of Grandpa’s money on wishes :> She never napped today, but Grandma was able to get a few videos of K laughing while throwing a ball to mommy and Grandpa. She is now waving and smiling to all the nurses when we take her by the nurses’ station & amazing them all with her willingness to take medicine and her sweet smile when they are done taking her vitals. “All done!”

We are praying for her blood counts to rise this wknd, and for her to be able to endure the planned Chemo on Monday (breaks my heart she has to go thru this!) We are hoping for more good days than bad, and that God will give us endurance and strength to be the best parents for her during this difficult diagnosis. As always, thank you for your prayers. We need those! They truly are what is helping our family get through this and what is giving K her good days! So, please keep praying, and we will do our best to keep you posted on her progress!

PRAYING FOR REMISSION!

Jeremiah 29:11

#PRAY4K

Duffy’s blog

My mom and stepdad Ron arrived last night after making the 11 hour drive back from their home in Florida as planned. I am so thankful they were able to come back so quickly. They had planned to help me with Kaylee’s transition to home from her last hospital visit…clearly things changed that plan today!

Today did not start out that eventful, as Kaylee made it clear that she didn’t feel so great from Chemo yesterday. She woke up crying but nothing I offered her for breakfast seemed to be what she wanted. She let Grandma give her yogurt, but didn’t chug her milk like usual and just generally wanted to be cuddled. She seemed to be extremely lethargic to the point that my mom made a comment to call the clinic about her tiredness. (she could barely keep her eyes open, she was so tired.) I reminded her that unless I had a question, a huge concern, or K had a fever that I wasn’t going to call the Clinic. We were told yesterday that the chemo would make her feel run over & tired. Around 11:00, K fell asleep by me on my bed while I was chatting with my mom. She took a short nap and when she woke up, I noticed she felt quite hot. We took her temp and realized she had a fever, so I called the clinic trying not to stress. The head nurse of the clinic told us to pack a few things up and head to the E.R. The nurse said she would let the E.R staff know we were coming so we wouldn’t have to have Kaylee be in the waiting room (which is what they do for most Oncology patients.) Once we hung up, is when I let myself be a little upset and cried for about 0.3 seconds before I realized I needed to suck it up & get ready to leave. I tried to be as calm as possible throwing in a few extra things in our “go-bag” while my mom did most of the stressing (sorry mom, I love you! ;> ) Ron drove us to the hospital while I fed Kaylee some lunch in the backseat.

Once we got to a Triage room in the E.R they took K’s temp (which was still a fever) and accessed her port to do a blood draw. Well, before they accessed her port, due to her low white blood cell count yesterday, I had to put on a mask since she was in my lap, and they had to put a mask on her…this did NOT go over well with her and the nurses asked me to hold her arms down so she would stop trying to pull her mask off! (I hated this b/c she was in hysterics at this point-poor baby.) She kept repeating “All done? All done? And then finally “All Done!” when the nurses were done with accessing her port. We waited until her blood counts came back~ her white blood cell count is even lower than yesterday (this is what Chemo does) Her platelet count was also low but not low enough to need another transfusion, and the rest were stable. One of the labs of blood work (blood culture) takes up to 48 hours to determine if her fever was caused by a virus, infection or (what we are praying for; just a reaction to the chemo.) They started K on an IV of fluids and an IV of Antibiotics. After the Antibiotics were in her system, they checked her temp again, to only find out her fever had gone up, (which is when I asked our Facebook prayer warriors to please pray.) They gave her Children’s Tylenol, and after almost an hour her fever finally broke and her temperature returned to normal.

We were then wheeled back to the Aflac Cancer Center to our new room. At this point Kaylee seemed much better, more alert and giggling at Grandpa being silly and Chris’s mom arrived to see how Kaylee was doing. After we all ate dinner and all the parents left to go home, we got K in her p.j’s & she fell asleep before we even attempted story time. She has been on and off sleeping ever since (our new room is right at the entrance so every time the door slams or people are talking loudly coming in, she’ll wake up for a second.) Her temperature has remained normal. (Just another example of how prayer is working!)J

We just talked to the nurse when she came in to check K’s vitals, and she informed us the Chief of Oncology will most likely ask us to stay until K’s induction phase is over since she spiked a fever today. (We will do whatever is in the best interest of Kaylee obviously, but I am hoping she is wrong!) For those that don’t know, when a child cancer patient gets a fever during the Induction Phase (first phase of chemo) & they have a low ANC count (the type of white blood cells that fight off any sickness) it can become critical, fast. K had an ANC count of 100 yesterday which is considered very low. Today, it was 3! Yes, 3!! She literally has nothing in her body to help her fight off any infection or sickness, so we have to stay here at the hospital at the very least until she stays fever free for 48 hours.

We thank you all for praying for our little girl and she obviously still needs them! We are praying for her fever to be just a reaction to chemo and not an infection. We are praying that she continues to improve, and feels better! We of course are still praying that God will heal her! We are praising God that we caught the fever right when it started, that her temperature is normal now and that my parents were at home with me when she needed to go to the hospital! Despite this roadblock, I still feel like Kaylee will continue to amaze us and that she can fight and win this cancer battle! God’s 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”

#PRAY4K

Duffy’s blog

12^th 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.

Aug~ 16^th

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.

#PRAY4K