March 25th 2014
Duffy (Mom) blogging

Note~ I originally wrote a semi decent update, but my computer froze and ate it all, despite my saving efforts. So, I am trying to remember what I said before, and type it quickly on Chris’s computer. I am also too tired to revise it before publishing, so here goes….

It has been about 10 days since I have updated on how Kaylee is doing. If you normally read our updates, you might be curious as to why we never updated about her big day of chemo that was scheduled last week. I took Kaylee to get her labs done, and they came back too low for her to receive chemo, so she was given a week off for her blood counts to restore. Thankfully, she still has not needed any transfusions or a hospital stay!

The week off is honestly what she needed. Our fighter needed a break. This phase is no joke, and I wish I could say she dealt with it the way some kids do by sleeping through it, but K has never been known to be an excellent sleeper. 😉

That last round of chemo gave K a diaper rash from hell that took 2 weeks to heal, a rash on her face that slowly went away, mouth sores, and almost total hair loss. (She still has fuzz in the front and about three thick strands covering the back of her head.) Pictures from a distance gives the illusion that she still has hair, but seeing her in person it is obvious that I am desperately trying to give her the Donald Trump comb over with those three strands of hair desperately clinging to her head.
It took K a few days to feel 100% but she has been on the move! This girl has been rowdy, fun and her sassy self. I have been calling her the K5 tornado. Everything in her path is turned upside down, so we have had a few lessons on putting our toys away when we are done before moving on. She has had her first “time-out” which went quite well, and one almost emergency room visit from falling head first into the dresser from trying to stand in the glider just as I reached out to scoop her up. She has had only a few play dates b/c although it was great to get a week off; her counts were really low, which increased her potential for getting sick quick. I wanted to be as careful as possible.

Yesterday morning when K woke up and I went in to get her broke my heart.
She pointed to her pillow and look concerned saying “Uh Oh! Mommy, Uh Oh!” I looked to see what she was pointing at and realized a large amount of hair was covering her pillowcase and she kept touching her head. I swallowed the lump in my throat and casually said “Good morning beautiful! Did you have a good night’s sleep? How bout we get you out of that wet diaper, and get you some breakfast?” She repeated “Brea-fast” and got distracted by telling me a few things that sounded yummy to her for breakfast. Later, while she was playing with her books, I switched out her pillowcase so it wouldn’t be an issue at naptime.
I took her to get labs done after breakfast (and sang the alphabet to Kaylee about 20 times in different accents that she found hysterical on the way there, including one I called “the Opera voice” which will never be heard in public.) Kaylee ran to hug our favorite lab tech Denise and asked for chikfila chicken as soon as we were done. (She can have whatever she wants on lab day or chemo days as far as I’m concerned.) Nurse Karen called today to tell me Kaylee’s counts. Her ANC count (which has to be 750 or more to do chemo) was 825 (crazy b/c last week it was in the 100’s! What a jump!) Her hemoglobin is stable, and her platelet count was in the 100’s (has to be over 75 to do chemo.) So she is good to go tomorrow. Tomorrow we start Day 29 of this 56 day Delayed Intensification Phase. We will be up at 6am to get to her 8am appt. She will get her port accessed, then she will be sedated to get Methotrexate chemo inserted into her spine, fluids before starting the Cyclophosphamide Chemo, fluids after, the Cytarabine chemo injection AND starting the new drug Thioguanine. It’s a heavy hitter day and it is all….day…long. The long list of side effects is our number 1 prayer request! We have quite a few prayer requests actually:

We are asking prayer warriors to pray away any and all side effects from all of this poison going into her teeny little body. We are praying that the day goes by fast and smoothly. We will be praying for the Dr’s and nurses to be rested and thorough. We pray for K to be calm for the numbing cream that we put on her for her port access, for her to be calm during port access and de-access. We are asking for prayer that the clinic pharmacy mixes chemo accurately and quickly. Lastly, we are praying for a quick sedation so she doesn’t have to be without food or water for too long. Whew! A ton of prayer requests this week, but honestly we couldn’t do without it. The people that have shared K’s story and are praying for her and us are what is helping us get through this!

I hope one day everyone that has prayed for our little one will get to meet her. I may be biased but I think she is pretty darn special! She just learned how to recite the alphabet out loud, (caught that on video today) learned how to count to 20 (with help) and LOVES to dance. She loves to Face time friends and family from the IPhone, give fantastic hugs, knock down blocks or sandcastles at the playground (our neighborhood playground is surrounded in sand,) and eat Macaroni and Cheese all day long (if I would let her.) She will not leave the house without at least one Minnie mouse doll with her, and new ice in her sippy cup of water (high maintenance?) At any rate, this age of hers has been the most trying so far, but my most favorite! I am incredibly grateful we are blessed enough to try to fight this battle with her and be there for her without hesitation. She WILL beat this! God is lighting the way for an amazing story! Trudging through this phase will hopefully be over soon, and one day be a way to encourage others to FIGHT LIKE A GIRL!
We love y’all, and thank you so much for reading and following Kaylee’s story!

#PRAY4K!

K’s battle scripture:
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.”
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Duffy blogging (mom)
(Too tired to make spelling and grammar corrections tonight.)

So much has happened in the last 14 days. I have meant to update this earlier, but I am now just finding time to try to write half of this while she is napping and the other half after her bedtime tonight. I last wrote on day 8 of this phase. It is now day 23 of this phase so I will do my best to get caught up.
I took K to the cancer clinic for her chemo on Feb 28th. It was a quick chemo day but we were there for quite awhile. Kaylee was her usually peppy self, wanting to say” Hiiiiiiii!” to everyone that passed by the room we were assigned to. She still fights getting her port accessed and de-accessed but she is fine just a few minutes later. She had Vincristine and Doxorubicin chemo, and when she was done she gave Nurse Karen a hug and asked for a sticker (or rather demanded one) “Sticker peas!” It was around K’s normal naptime when we left to head home, so I did everything I could think of to keep her awake in the car so she could take a good nap in her crib at home. I didn’t realize 575 would be shut down due to a fatal accident, so it took us much longer to get home by taking a detour, and by the time we did get home, she didn’t want to nap. I did not get the memo that it was no nap Friday. Don’t get me wrong, I tried. I put her in her crib, but our little cutie just laid there and sang songs & talked to her stuffed animals for a solid 45 minutes before I came to get her. Needless to say she went to bed easily that night.

We had a pretty good weekend, and then Monday came and I started to feel like I was getting sick. I am the hand sanitizer sergeant. I use purell wipes on any cart I put K in for shopping and that is before putting her cart cover down, so I have no clue how I managed to get hit with another cold, but this was wicked. Tuesday morning I woke up feeling like death, and Chris tried to explain to a very energetic Kaylee to go easy on mommy while he was at work “mommy doesn’t feel good, be sweet.” Apparently she listened, because she was ok that I canceled our play date & seemed content playing at the house all day. I napped when she did and almost cried when Chris came home early from work to help me. I was worried all week that I would get her sick, but that is pretty inevitable when I’m with her all day everyday. We made one grocery visit to get much needed ingredients for my homemade chicken noodle soup (that K loves,and I needed for my cold.. plus she got to see Jenny whom K adores and wont let out of her sight while we shop) The rest of the week consisted of canceling play dates and trying to get her outside to play for at least an hour. K loves playing outside, and especially chasing after the dogs. She was a ball of energy, eating well and only woke up one time in the middle of the night to sleep in our bed. I called the Clinic on Thursday to let them know that I was getting over being sick, that K could very well be coming down with it as well, and should we still plan on coming the next day for chemo? They said as long as her blood counts were ok, they would proceed.

The next day was March 7th and it was the best I had felt all week, so Chris and I took K to the clinic to get her Vincristine and Doxorubicin chemo as scheduled. We met a new nurse who K wanted to hug twice while she asked us the usual weekly questions while waiting for her blood counts to come in. K’s Dr; Dr Pauly came in to share with us Kaylee’s counts. (Kaylee had to hug her too, love my sweet girl.) Kaylee’s ANC count (white blood cells that fight off infection) was 500 (they usually will not do chemo unless her ANC count is 750 or higher) and they debated for awhile on whether or not she should go ahead and be admitted to the hospital.(??) I immediately said “Whoa…wait. She does not have a fever and seems fine, so there is no need to be admitted to the hospital…that is what you told us, right? Hospital stay only if she’s sick or has a fever. Her ANC count has to be higher than 750 to do chemo, but no hospital stay…correct?” Dr Pauly said she actually felt comfortable with Kaylee doing the chemo, despite the blood count and that she trusted us that we would bring K straight to the hospital if she spiked a fever, so she wouldn’t admit K to the hospital just yet (insert sigh of relief from me!) Chris had to leave for a work meeting, so I stayed with K for her chemo. Kaylee wanted to help Nurse Mary push the last remainder of Doxorubicin in the syringe into her port (such a helper), and watched TV while she received the Vincristine. It was getting late in the afternoon when we were done for the day, so she took a long nap in the car while I dealt with Atlanta Friday traffic to get home. Kaylee had to start a week of steroids again that night, and I prayed it would be a bit easier on her this week.

Saturday morning she woke up and clearly the steroids had kicked in. She was happy one minute, crying over nothing the next. Ex: Me: “Kaylee, do you want a yogurt, waffle or bagel for breakfast? K: “Bagel..butta. Me: “you want a bagel with butter? Ok. Let me get you some juice while that is toasting.” K: (now in a hysterical fit) Nooooooo juice! Milk! Milk! (sobbing) Milk Mommy! Me: Ok, ok..Calm down K..no juice…getting you milk. (K sniffling her sobbing away over this apparently HUGE mistake on my part. (Real life..steroids.) She also developed more mouth sores from the chemo again, except now she knows to say “Swab da mouth! Make it better!” (Perhaps from all the times we explained to her that we were swabbing her mouth to make it feel better.) So we swabbed her mouth with magic mouthwash to numb and soothe the sores.
The day got a bit better when we took her to the playground with only a few way out of proportion hysterical fits once we got home. Chris had planned out a date night for us, (thank you Lord) and his mom, stepdad, and stepbrother came to visit (and then babysit once we put K to bed.) They got a glimpse of what we deal with when she’s on steroids as she was good one minute and then a mess the next. She went to bed with no issues and Chris and I got to go on a date! I had forgotten how good it felt to get out with my husband toddler-less! Such a fun, and much needed night out! (Thank you again Debbie, David and Ethan!)
K had a rough morning on Sunday but we had a surprise for her. Her great grandpa and grandma (Pop-Pop and Mom-Mom) were coming to visit her. So when she woke up from her nap, I told her Pop-Pop and Mom-Mom were pulling in the driveway. She was so excited and could not wait to see them. She was especially excited to see Mom-Mom had brought a gift of a Minnie Mouse hand towel for her. “Minnie!! Awww tank you!” She had a great afternoon visit with them and smiled and laughed quite a bit. They were such a help to me b/c at this point the cold that I had, took my voice with it. It was a beautiful day so we spent the majority of the day on our deck which K loved.

Monday March 10th, K slept until 8:45, (the time changed so it was her regular time of 7:45, but Spring Forward makes it sound later.) She refused to eat anything for breakfast and wanting to cuddle with me to watch Sesame Street (snuggles with my lil one? Count me in!) By 11:00 Kaylee looked me and said “Mommy, I nap.” She clearly didn’t feel well and wanted to sleep. When she woke up she seemed to feel better saying “Slides? swings?” this is Kaylee language for she wanted to go to the playground. I got us ready and took her to the playground and after going down one slide 3 times, she said “I go home.” I repeatedly said “no swinging? No more slides?” She looked sad and so tired and said “no, I go home.” As soon as we got home it was “Mommy cuddle me. Watch Minnie.” I was beginning to worry a bit, because she was either getting my cold or her counts were super low. We cuddled on the sofa and watched Mickey Mouse Clubhouse for an hour. She barely ate dinner and went to bed early.
Tuesday morning I ended up calling the clinic b/c Kaylee developed a red rash from her cheek to the back of her ear. The nurse assured me this was a side effect of the chemo. I told her how K had been acting and she asked me to get K’s blood counts on Wed rather than Friday b/c it sounded like K needed a blood transfusion. (When K’s counts are low and she needs a blood transfusion she is normally pale, very lethargic, doesn’t eat well and generally feels lousy. This was all going on.)

Wednesday morning was interesting, all before we needed to leave for the lab to get K’s blood drawn. While I was getting Kaylee’s morning steroid ready, I accidentally shot some of the Dexamethasone in my eye, (causing me to panic and splash about a gallon of water in my eye to get it out), Set the house alarm off (for the 162nd time this month on accident) and then lost my phone (in the house, mind you) for a solid 30 minutes. Clearly, I needed more coffee. At any rate, we got to the lab and K was excited to see our favorite lab tech Denise and K gave her a big hug. K pointed out which finger Denise could prick and even Denise noticed Kaylee was looking rather pale with red rings under her eyes. At this point I would’ve put money on the fact that she needed blood. K took another early, long nap once we got home, and only wanted to cuddle almost all day. She felt terrible and I was anxiously waiting to hear from the clinic about her lab results.

Thursday morning was hard. I went in to get Kaylee who had woken up and as I picked her up, I realized a small clump of her hair on her pillow. I knew it would happen, I just didn’t know when. While I was snuggling with Kaylee, Nurse Mary called me from the Clinic and shocked me “Well, Duffy, I am surprised here. Her hemoglobin is actually fine. Her hemoglobin is 12.8 (blood transfusion only needed with a hemoglobin count of 8 or below.) Her ANC count isn’t high enough for chemo, but this is her week off chemo, so we will need you to get her blood counts again on Monday to see if she will be up for chemo on Wednesday (March 19th) as scheduled. Her platelet count is fine though. Seems she must be struggling with the combination of the chemo and the steroid and possibly fighting off the cold you had. Could be a few days until she is back to her energetic little self.” At this point I knew I needed to update the blog and gather prayer warrior’s b/c Kaylee looked so pale and sick I was worried. Was chemo finally knocking her down this round? Throughout the day Kaylee’s hair was continuously falling out and covering her shirt. It wasn’t until bedtime when I prayed with her that it really made me sad. If it was happening to me, who cares…no biggie! But it is our 2 year old daughter. (Most won’t get my way of thinking until you have to live this.) I just have always hated the idea of others seeing her without hair, which causes the immediate realization of any passer by of “aww that little girl has cancer.” And get the sympathetic smile from people we don’t know. I wish people could automatically know what a fighter she is, what an amazing job she is doing and the sympathetic smiles would be high fives to Kaylee instead.

Last night she woke up screaming in her crib shocking Chris and I awake. We brought her to our bed, and it took a few minutes to calm her down. She immediately asked for Tylenol, saying “don’t fell good mommy.” (broke my heart.) Clearly, there must have been people praying because she woke up this morning sweet as can be. Although she declined any breakfast and wanted to cuddle the first part of the morning, the afternoon is when she changed. I saw the smile come back! The coolest part of the day is when I had to return an item that didn’t work to the All4kids consignment sale I had been able to attend the other evening. I had to explain to a volunteer why I couldn’t come inside (no way was I going to risk taking K in there with her low ANC count.) A different volunteer came out to bring me my refunded money and asked “did I hear right that your child in the car is going through chemo?” I explained K’s diagnosis and her low counts and this sweet sweet woman said (as Kaylee is shouting “hiiii!” to her) “I hope this doesn’t offend you, but my husband is a Leukemia survivor, and I would love to pray for her with you if that is ok with you.” I immediately told her we would love that, so she walked around to Kaylee’s side of the window that I had rolled down, said hello to Kaylee and prayed a touching prayer of healing over her. When she said Amen, she seemed surprised that Kaylee gave her an enthusiastic “Amen!” Lol. I do not know this woman’s name but she touched my heart today, and I was very thankful for such a surprising blessing!
The rest of the day was great. K wanted to play outside! She was laughing and playing with the dogs again! I cannot explain how happy this made me to see her feel well enough to play! She was even giggling at bedtime with me and Chris. Love having my happy girl back! I am praying that this continues.

As of last night, she is now done with her steroids for this phase! AMEN! As thankful as I am that she doesn’t have to take any more steroids, I have mentioned that this phase is brutal, and it is. Next week begins the Cyterabine chemo injections we have to give her at home, and she will be getting chemo at the clinic twice next week (depending on her blood counts.) She will be starting a new oral chemo she has never had before called Thioguanine as well as getting sedated to get Methotrexate chemo inserted into her spine and an hour IV drip of Cyclophosphamide chemo through her port. Big week! I don’t know whether to pray for her counts to go up for her to just get this over with, or to pray for her counts to remain the same to give her a week break! She has to get her blood counts done again on Monday, so we will know more then, but our prayer requests for the wknd is that God will just keep our little girl healthy, and happy. As much as I love cuddling and snuggling with her, I would much rather her just be happy. That while He is healing her from her Leukemia, coming off the steroids will not have any negative effect on her. I am going to go ahead and ask for prayer about the injections that we have to give her. This has been just a nightmare in the past when we had to do this, so a little extra prayer will be so helpful.

We are thankful that the chemo is doing its job and Kaylee is kicking cancers butt! She has had a rough week, but I am so proud of her! She has no idea that at only 2 years old, she is my little hero! God has His mighty hand on her and although I cannot wait to get this phase over with, I know that we will never take her health for granted. We remain focused & faithful that there is not a possibility that she could lose this battle. She will beat cancer and come out with an amazing testimony to share!
Thank you for praying for Kaylee, for us and the weeks ahead. We are almost halfway through this monster of a phase, and your prayers are what is getting all of us through it!
Until next week………….

#PRAY4K
Jeremiah 29:11 “For I know the plans that I have for you,” declares the Lord “plans to prosper you and not to harm you, plans to give you hope and a future.”
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Blog updated by Duffy (mom)

Our little girl is two years old! How in the world did that happen so fast?! Kaylee turned 2 on Feb 24th (just a few days after her first round of chemo and daily steroids.) I always begin these blogs backing up to where I left off last, so here goes.

We took her to the Cancer Clinic on February 20th to begin the Delayed Intensification phase. She was sedated (which never gets easier to see,) to get Methotrexate chemo inserted into her spine to keep away any stray cancer cells away from there. The injection took about 5 minutes, and the nurses allowed us back in the room to be there when she woke up. They went ahead and started one of her two chemo treatments that would go in through her port while she was still asleep with us in the room. She was scheduled for Vincristine and Doxorubicin for anyone who wants to Google those side effects. By the time K woke up, she woke up quite peacefully happy to see us there and immediately asking for water. She actually asked to help the nurse push the syringe of Doxorubicin into her port line. “I help push” she said with a mouthful of a cereal bar. I did not realize this was going to be a quick chemo day, so when the nurse said, “we can go ahead and de-access her port”, I was happily surprised. Kaylee cannot stand anyone touching her port so accessing and de-accessing it has been a bit tricky on diverting her. That night we got her steroid ready mixed with cherry syrup and gave it to her orally praying she would not become as moody and sleepless as the last time she had this Dexamethasone.

It was almost instantaneous. The sun came up on Feb 21st and my sweet little girl became a crying mess. I was desperately trying to straighten up the house and cater to Kaylee, because my mom and stepdad would arrive shortly from Florida. Kaylee was on fit # 87 before asking for a nap at 10:30am. Her regular naptime is around 1:30, so I knew she felt terrible, poor thing. I’ve never been so relieved to see my mom and Ron walk thru that door! When Kaylee woke up she immediately looked happy saying “Papa? GaGa?” (Her names for Ron and my mom.) I said “Yes, honey they are here!” and she ran to the stairway smiling happily yelling “PAPA!! GAGA!” Needless to say, she was still Jekyll & Hyde all day but it was so incredibly helpful to have them here! They are masters of distracting her before she gets too wound up of crying about nothing.

Fast forward to her birthday party day Feb 23rd! Kaylee knew something was about to happen when all morning Chris, my mom and I were running around putting decorations up or cutting up food. She would look at me and say “I so excited!” precious. The Minnie mouse themed birthday party went fantastic and Kaylee only cried one time the whole day (when everyone sang happy birthday to her.) Her cousin, Micah received the biggest laughs out of her (she adores him!) She happily yelled “KEB-IN!” to Uncle Kevin about 100 times when he was leaving (they have a special bond and she instantly smiles whenever she sees him, and screams his name.) She hugged people randomly throughout the party, and although she still won’t smile on command for pictures, we knew from all the smiles and laughter throughout the day, the birthday party was a big success! Almost as like a special gift from God, the sun was shining and it was warm outside! Perfection! So so thankful this went well for her because she so truly deserved a special day! The next day was her actual birthday. Mom and Ron needed to head back to Florida, and I actually sat on the stairs with my mom before they left (when Ron was playing with Kaylee outside with the dogs) and cried to my mom. “How am I supposed to handle this without y’all? You’ve seen her. She is all over the place and I am wiped out by noon trying to diffuse tantrums or be understanding of the crying/screaming about nothing. It’s a train wreck.” My mom prayed with me and although agreeing with me that this phase is tough, she assured me all would be ok.
Side note: Kaylee remembered praying with Ron and Mom before meals the last time they were here, so every time we sat down to lunch or dinner Kaylee demanded “Pray!” heart melting! More often than not, she would demand “Pray!” 2 or 3 times per meal, and we would oblige. She still does that at dinner every night, and I love it!
February 25th, it was back to chemo. We have a “road map” of everything K will go through until this is all over, so it is super helpful to look at to help me keep up. She had her port accessed and Pegasparagase chemo. This was a 2 hour chemo and we were home shortly after lunchtime. For a little girl just having chemo and steroids twice a day, I would never have imagined I would catch her dancing to the song ‘Happy’ by Pharrell Williams later that day! This was such a joy to watch (and capture on video!) Regardless that she was dancing on the sofa ottoman and if she fell she could seriously get hurt. Watching her shake her hips while smiling just had me thanking the Lord for this gift of happiness on what could have been a yucky day! Who dances after chemo?! Love it!

Kaylee is barely eating anything these days, which is weird b/c this steroid is supposed to make her a monster eater. She was tugging at her mouth a ton today saying “HURT!” and I finally used a small flashlight, distracted her with Minnie Mouse and took a look in her mouth. Sure enough, baby girl has 5 mouth sores! YIKES! I wouldn’t want to eat either if it hurt! I immediately swabbed her mouth with magic mouthwash, and she helped me get dinner ready. She loves “helping.” She ate all of her dinner and asked for thirds! (Thank you Lord) So thankful for magic mouthwash! My amazing napper isn’t napping as well, but sleeping well at night (meaning she isn’t waking up hourly like last time being on steroids. She is still waking up once a night, but I will take that any day over waking up hourly with my little girl in pain.) We have had a few strangers feel it necessary to ask me her age and then bring up her lack of hair which has me biting my tongue each time. I did however finally explain to one person that chemo stole her hair when she wouldn’t let it go.

Tomorrow is day 8 of this phase and she gets a week break from the steroids! AMEN! She has chemo tomorrow (Friday) in the morning and I will be flying solo as Chris will be at work. Tomorrow she has a quick chemo day of Vincristine and Doxorubicin again. (Does anyone else feel like this tiny little girl is being overloaded on chemo? Yeesh.) She will return back to chemo next Friday (March 7th) and starts back on steroids twice a day at that time.
Our prayers for tomorrow and this entire phase (which is approx 8 weeks long.);
That she will have 0 side effects. That accessing her port will become easier, that we will find a way to keep K happy through this terrible phase. That she will come through this phase like the rock star that she is. Praying that we continue to lean on the Lord when we feel like breaking, and continuously thank Him in advance for healing her! There is not a doubt in my mind that she will beat this, but paddling through it sometimes feels endless. How blessed are we that we can unload the doubts and uncertainly to the Lord and say “Please take this. All of it. You already know the outcome, and we fully trust your timing, your reasoning and your ability to heal her, and that you will heal her!”

Thank you for praying for Kaylee, and our family! She needs those prayers, and we are forever grateful to y’all for sharing her story, and reading about how she is doing. Some days are great, some days are bad. But EVERY DAY we are thankful that she continues to fight!

#Pray4K
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**

Duffy blogging

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 27^th, 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 14^th…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 3^rd-5^th day post chemo is usually rough. My birthday was actually her 3^rd 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 31^st 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 1^st 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 1^st 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 24^th!  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 14^th. 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.

 #PRAY4K

**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!)

Jan 23^rd 2014

Duffy Blogging (mom)

It’s always hard to begin to describe our life lately in kind of a nutshell. Kaylee rocked her last round of methotrexate so much so, that we were allowed to leave a few hours earlier than expected! Now here it is, two weeks later and I took her to get her blood labs done on Wednesday morning. I got a phone call from the Clinic today that she’s ok to begin her last round of her methotrexate drip. Her ANC count (illness fighting white cells) is over 1,000 (which is awesome), and regardless of the fact that she is getting a cold she has been cleared to go. So we are packing up again for a 4 day hospital stay at Children’s Hospital of Atlanta. Tomorrow (Friday) we will begin our day at the CHOA clinic (which is 50 yards from the hospital) where Kaylee will get her vitals done and her port accessed. She will begin heavy amounts of fluid until we are assigned a room in the AFLAC section of the hospital. She will be cleared to start the 24 hour methotrexate (chemo drip) and when that is finished, she will start heavy fluids again to flush the chemo out of her body as fast as possible. We have gotten pretty used to this routine and know it is usually 2 days from getting discharged from the hospital that she starts to totally feel like crap.

This is where I can back up and tell you how she has done the past two weeks.

We returned home Monday late afternoon (which was soooooo much better than coming home at night like the chemo round before!) Tuesday morning I had gotten K dressed and ready for the day before the ADT security guy came to update our home security settings. K ran to greet him at the door.While he was up in our attic I was putting away clean dishes. Kaylee was playing with her Minnie Mouse by the fridge in the kitchen and she slipped & face planted the hardwood floor. I know by now not to freak out if she falls b/c it causes her to cry. I looked over and said “your fine honey, it’s ok.” Then I saw blood. I ran over to her and through her ear piercing screaming cry; I went into total panic mode, scooped her up and tried to stop the bleeding coming from her mouth & see if we needed to go to the hospital for stitches. No one tells first time moms how much mouth injuries bleed! So while I’m trying to keep pressure on her lip with one hand, I’m trying to call Chris with the other. When he doesn’t pick up his phone twice, I texted him 911. Chris meanwhile is meeting the Dr in the emergency clinic for a possible broken rib from a friend who gave him the Heimlich incorrectly after choking that morning! (We are a mess! Lol)

Enter the Godsend. The ADT guy strolls into the kitchen and calmly tells me he used to be a EMT and could check K’s lip to see if she needed stitches (since he clearly heard me mumbling on the phone frantically to Chris’s voicemail about K’s platelet count and busting her lip open, and all this blood etc) The ADT guy said while he checked her lip, I needed to put her pacifier into the freezer. He took a quick look & assured me that her mouth would not need stitches, but she would be in pain. Thank God for him being there! As soon as I got her bleeding under control I gave her the frozen pacifier to keep the swelling down and Tylenol. Chris came home for lunch to make sure all was ok and our planned play date came over early to help K keep her mind off her “owie.” (Jennifer Gould you are a Godsend for coming over with wet hair and no makeup on simply b/c I sounded so panicked about K falling!)

Luckily, there have not been any other injuries, but she has learned a ton of new words, had a few play dates and a few side effects from the chemo. She did get mouth sores again, but since we now know what to look for, we can nip it in the bud pretty quickly. It was this week that had me a bit concerned. K started to get insomnia (side effect from chemo) and then would cry in her sleep, and wake up constantly at night. All but one night she ended up sleeping with us late at night. For a mom, this is a bit stressful when all you want is your child to be happy. She looked tired all week, but took amazing naps every day. I would take her to her ‘happy place’ (the playground) and she would look sad after a few trips down different slides and then say “I go home.” She wanted to go home. This isn’t normal for her. She was such a strong little girl getting her blood labs done on Wednesday, almost looking bored waiting for it to be over & just smiling and saying “Daaaaa-neece!” (Denise is our lab tech that is fabulous.)

I have no answers to the things that worried me this week but I will bring it up to the clinic nurses tmwr.

All the small concerns seem so trivial to things that really could be going on, but to be honest all the prayer is really adding up and helping beyond words. If I sit back and think about all that she has been through and has yet to endure it makes me cry. How does she do this?! I explained what it is like this week to my brother “It is like a fighter getting beat up, and once that fighter is finally healing, she gets beat up again. Can you imagine wanting to keep fighting…month after month? She does. She blows my mind, and all we can do is cheer her on, try to make every day count to keep her mind off any side effects, pray for healing, and thank God for doing all that he has already done for her!” We are blessed that she is so young that to her, all of this is normal. It’s sad that THIS is ‘normal’ for her, but I imagine this would be much harder for an older child. I also cannot wrap my brain around the fact that next month she will be 2 years old!! How did that happen so fast? It also is the month that begins the next phase called Delayed Intensification. I’ll discuss the next phase on the next blog, but I am prepared for all of her hats to come in handy then . (Hey, at least it’s a perfect month to wear hats with all this cold weather, right?!) God bless her.
Before I go into this week’s prayer requests I do want to mention that we are discussing wanting to do a blood drive in Kaylee’s name this spring since the Children’s Hospital of Atlanta so badly needs blood donations. We want Be The Match to be involved as well (Google; Be The Match.) We will need volunteers and any businesses that are interested in being involved. I’ve been told this will take a minimum of 30-40 volunteers to put signs up, saturate social networks, organization etc… So I just wanted to throw that out there for now. We are still working on the date~ trying to decide on doing this in March or April. We already have had a large space offered to have the blood drive, which is here in Holly Springs. J

Our prayer request this week: For a calm Kaylee during her port access tmwr & de-access on Monday. (She hates this and is now arching when they try to put the needle in even though she has numbing crème on.) We are asking for prayer that this wknd will go by quickly, and that she will clear the methotrexate out of her system quickly. We are praying that she will not experience any side effects from the chemo (this can be done!) and that she will get some needed rest during this chemo. Above all else we are thanking the Lord for all He has done for Kaylee and our family, and all He continues to do. We are thanking God in advance for healing Kaylee of this cancer and continue to trust His timing and purpose of all that is going on. This is after all our new normal and we are continually reminded Do Not Fear, Gods got this!

#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.”