Quick update

8/20/15

Just a quick update while Kaylee is napping:

We have rescheduled K’s biopsy to August 29th. K’s oncologist prescribed Kaylee a medication she “doesn’t think will work, buts it’s worth a try before putting K through more pain of a biopsy.” Also, Chris can go with me to the biopsy since we re-scheduled it for a Saturday! 🙂

In other news- After a VERY hard morning of Kaylee screaming & crying when Chris and I brought her to preschool, (which caused me to ugly-cry my way to the car as soon as I left her classroom,) We received a picture of Kaylee from a friend & the teacher showing she was all smiles & doing great 5 min after we left! Thank you Lord!!! When I picked her up from school she said “Mommy! I had Sooo much fun!! I was sad when you left but then….” (and she listed every single fun thing they did today. Lol) seriously so precious! So so thankful she enjoyed preschool today! 🙌🙌

Thank you, thank you, thank you for your prayers! 🙏We will keep you updated on how she’s doing very soon!
Have a great day!! 😃

#PRAY4K
JEREMIAH 29:11

IMG_5723

Test results

Aug 19th, 2015

Amen & well, crap!

Kaylee’s CBC results came back to us yesterday.All her counts came back perfect. (When someone has the parvovirus, the hemoglobin count is usually affected.) So when the doctor told us the news that her hemoglobin count was great, she followed up with “go ahead and schedule a biopsy of her knee,” so we did.

I just got a call from her doctor a few minutes ago with the results from the virus test! Kaylee is negative for the Parvovirus (which we expected since her CBC was good.) While this is great news, because it means she can attend school, we are still left with a mystery of what is causing this itchy, slowly spreading rash.

Please, PLEASE continue to pray for Kaylee. Tomorrow will be her first day of preschool, (I’m ready with a box of Kleenex) and then she will have a biopsy on her knee at 3:30. (Might need that box of Kleenex for the both of us for that!) Rough day.
Anyone else feel like a 3 year old shouldn’t have this stuff to deal with??! 😥
I still trust that God can totally heal this crazy rash before that appt tmwr!!! Obviously, we would prefer miraculous healing & the rash to just vanish!
So we are just going to keep praying! We are praying for a fantastic first day at preschool & total healing! We will also pray for a easy & painless biopsy for Kaylee and to finally get answers from that biopsy!

Thank you all so much for your constant thoughts & prayers… You have no idea how much those prayers mean to our family! I have to say that your prayers have clearly helped with her energy! Today she has been the happiest I’ve seen her in quite a few weeks. (Thank you Lord for that!) Keep those prayers comin!

4 months left of daily chemo! She’s Allllmost done!!

We will keep you updated on how things go!! Until then…….

#PRAY4K
Jeremiah 29:11

*********

Prayer warriors needed

8/17/15
TESTS

Hey there! I know we are totally behind on doing a routine update on how Kaylee has been doing, but this is more of an urgent matter.
The beginning of July, Kaylee fell and skinned both of her knees while playing outside. After her left knee started to heal, a small rash formed around her kneecap. Since then the rash has started to slowly spread. I made an appointment with her pediatrician who prescribed a steroid cream to use, which did not work. At her last clinic visit the oncologist saw k’s knee- didn’t know what it was & referred us to see a dermatologist at Emory. We figured her steroid week would knock the rash out, but it didn’t. The dermatologist at Emory didn’t have an opening until October so I made an appt for her to see my dermatologist. The dermatologist said “well it’s not contagious, since you and your husband don’t have it. I think it’s a virus. Maybe it’s parvovirus or Leukemia Cutis … But as you know, if it is a virus there’s nothing you can do but just wait it out (which could take quite awhile for an immune deficient child) but here is a new cream to try. If the rash is not gone in 3 weeks, I would like to have you come back so we can do a biopsy on her knee.”
That was on Friday August 14th. The new cream has done nothing & watching this rash spread & my daughter feeling itchy & lethargic has really worried Chris and me.
(Keep in mind, that since July, we have tried eczema creams, steroid creams, Cortizone and anything else doctors have suggested or prescribed for her.)

I finally called & left a msg for K’s oncologist last night and asked them to order a virus test and a CBC because my mommy gut tells me something is wrong & I cannot stand not knowing answers for K.
Thankfully, her doctor agreed and I took Kaylee today to get an arm stick for the 3 vials of blood they needed. Poor baby screamed through the blood test (which is so hard for any parent to see) but Chris and I calmed her down pretty quickly after it was all over.

Here’s the part where we NEED PRAYER. Right now her CBC is pending & the virus test should come back on Wednesday morning. Kaylee’s first day of preschool is supposed to be this Thursday. 😐
So we are praying for not only clear answers on what is causing this, (and hopefully an easy cure) but for God to completely heal her legs, hands, and bottom (where the rash has spread.)
(Without posting a picture, I cannot accurately describe what the rash looks like but think of an allergic reaction & that’s what we are seeing.)

We’ve seen the magnitude of what prayer can do for K, so we challenge you, ask you, beg you, to please pray for our 3 year old Leukemia warrior & quick, miraculous healing for her!!
I am so ready for her just to finally be healthy & my heart is so heavy with concern.

We will make sure to post results Wednesday when we have them.
Thank you in advance for praying for our little girl. She needs those!!

#PRAY4K
Jeremiah 29:11
********************

Long Overdue Update!

 

Written on 3/12/15, 4/1/15 and 4/8/15 😉

Duffy (k’s mom blogging)

A long overdue update!

Warning: longest update ever.

Say wha? How is it possible I haven’t written an actually update since January 29th?! Clearly, there is way too much to remember, so I will try to simplify as much as possible…but if you have read the updates before, I tend to get a bit wordy…

On February 8th, Kaylee seemed to be having a good day and was playing fine, but said quite a few times how she wasn’t feeling well. She is not a big complainer, so a little before lunch Chris decided to take her temp because she started to feel a little warm. Little one had a fever. With Leukemia, if a fever lasts longer than 30 min, you need to go immediately to the ER. We called the on call Dr after she had a consistent fever for over an hour, and he called the ER to let them know we were coming (this is so cancer kids can bypass the waiting room so they aren’t around all those germs.) Poor K had to have her port accessed, so the nurses could do a blood draw, and once they realized her fever was only getting higher they finally gave her Tylenol. It was clear she felt terrible but the nurses seemed to fall in love with K when she would say “thank you for helping me.” (Such a sweet little one.) After many hours at the ER, we got the news that we did not have to be admitted b/c Kaylee had a high enough ANC count to be sent home with antibiotics! Hooray!

Only 3 days later, we were on our way back to Scottish Rite for Kaylee’s scheduled clinic sedation & chemo day despite her recent ER visit. This was an eye opening visit, because things changed. Not in a bad way, not in a good way… (Her sedation and chemo that day went fine.) One of our favorite Leukemia Dr’s was Kaylee’s Dr for the day. He is one of the head researchers for Leukemia, and when he talks, everyone listens. He said it would be a good idea to start Kaylee on an antibody IV for now on during her monthly chemo visits. Her blood levels have been such an ongoing rollercoaster, that he ran a blood test on her antibody level that came back low. I know I will mess up explaining this, but this new infusion she will be getting is called an IVIG (also called IGG) infusion. It replaces antibodies her body should be making (but isn’t) to keep her healthy and her blood levels consistent. Her immune system cannot make more on her own, so she would need to get this IV monthly (at least until the flu season is over.) Her Dr also wanted to change her preventative antibiotic she usually gets every wknd to a monthly IV type called Pentamidine. So, the new IGG infusion plus the new antibiotic will now tack on 4-6 hours each month she has her clinic chemo visit. We’ll do anything to help her, but these new additions make for a very long day for her (and me.)

A few days before Valentines Day much to my surprise, I got a facebook message from an old friend of mine who said that she had spotted K on a CURE billboard in Cumming Ga. We knew nothing about Kaylee’s face being used for a billboard, but knew CURE would be using photos from a photo shoot she attended for their marketing material.  We planned on driving out to a petting zoo on Valentine’s Day which was rather close to Cumming, so we decided to stop by and see the billboard (and take a million pictures of it.) Once we arrived at a place we could park and see the billboard, we got K out of the car and pointed to the billboard when she said “Mommy! Daddy! That’s Kaylee! Wow! I so big!” with a big smile. We loved it, and can only hope our baby girl’s face can raise more awareness about childhood cancer! Pretty soon, I was getting multiple txts and facebook msgs from friends passing different billboards around Atlanta for Cure with Kaylee’s face on it!  It was and still is so fun hearing where each billboard is spotted!

Feb 16th Kaylee and I made our way back to Scottish Rite cancer clinic to start her first IVIG infusion and IV antibiotic the Dr suggested. Poor thing had to get her port accessed for the third time in a little under two weeks, (which I know was probably sore) yet she was just a sweetheart the whole day.  I was able to set up a meeting with The Rally Foundation while we were at the clinic, and I hope to get Kaylee involved with them pretty soon. Like Cure, The Rally Foundation not only raises awareness on Childhood cancer, but funds research for new cancer treatments for childhood cancer, and that is so so so important! Luckily, the infusions didn’t seem to have any bad side effects on K, so we were able to head home around 3:30 that day.

THE BIG 3!

Feb 20th, my mom and stepdad came into town for Kaylee’s 3rd Birthday party! (Her Birthday is actually Feb 24th but we scheduled her party for the wknd before) Chris and I decided this year to really only invite family for her birthday. My mom was a huge help getting my Pinterest ideas for Kaylee’s Princess themed birthday party set up the night before. We of course let K choose the theme this year. The day of K’s birthday party, she woke up happy and excited because she knew she would see so many of her favorite people. She was talking a mile a minute about how this year she wouldn’t cry when people sang Happy Birthday to her, and she was going to tell everyone she was 3!She was so excited, it was precious! She kept listing literally every family member that was coming to the party, which is kind of amazing, because Chris has a rather large family. She took a good nap and woke up just a few minutes before her party started. Kaylee had a great time! She really got into opening presents this year and running to hug everyone. We were so incredibly thankful she was healthy and happy for the special day for her!

Feb 23rd was blood labs day, so I took K to Wellstar labs so she could attack her favorite Lab tech; Denise with a running hug (which she did.) This marked the first day Kaylee insisted she was a big girl and didn’t need to sit on mommy’s lap for her labs! Say Wha?  She then proceeded to smile and talk to Denise during the finger prick and her blood lab! Who is this amazing brave big girl?! It baffles me how much she has grown up!

Feb 24th was Kaylee’s 3rd birthday and it snowed! What a fun surprise for the birthday girl! After a huge pancake breakfast for the birthday girl, we broke out the sleds, met the neighbors outside and took turns sledding down the huge hill in our yard. She tried her first cup of hot cocoa, roasted marshmallows with mommy, and smiled for pictures out in the snow. Once Chris came home from work, we made a big fuss over it being her 3rd birthday, and completed the day with a giant cupcake for her.

Skipping ahead to other great news, Kaylee was cleared to start Dance classes! So, on March 10th I enrolled her in a 3 year old dance class which is both precious and hilarious to watch. Little tiny 3 year olds in pink tutus attempting to do what the teacher says ~ what is not to love?! My daughter spends most of her time in class doing whatever dance moves she wants, getting a lot of redirection from the very patient teacher, and checking herself out in the long ballet studio mirror, LOL.  As long as she loves going to dance class, she can go… (Although I have had to have a few discussions with her on actually doing what the teacher tells her to do.)

March 11th, it was back to the clinic for K’s chemo & infusions day. Our brave girl did not cry when she got her blood labs done, and barely cried when they accessed her port! We were there for 5 hours, so I was thankful that the therapy dog came to visit, and there were a few kids for her to play with in the toy area. That night K started her monthly steroid week, which Chris and I have now termed “Hell week.” Sorry if that offends you, but that’s what we call it.  I can try to sugar coat our experience but I am better at just telling it like it is. She wakes up in pain quite a bit, she’s an emotional rollercoaster (crying throughout the day and not knowing why) and she usually winds up in our bed after waking up all hours through the night. Steroid Week usually means no one in this house is getting much rest, and everyone is a bit grumpy.

The following week was filled with playdates, family fun at the zoo, and a run in with the Easter bunny while running errands at the outlet mall. (If you follow Kayleesbattle on Instagram, you will see the picture of her literally running to hug him.)

March 26th, my heart just about exploded when Kaylee asked me to try to give her pigtails and it worked! Her hair is long enough for the cutest little pigtails ever, and I took over a dozen photos of it before she took the rubber bands out. Thanks to an app on my phone, I was able to see that last year at this time she was bald, so being able to put Kaylee’s hair in pigtails made me totally tear up with thankfulness.

K attempted and loved her very first gymnastics class on March 27th! What a joy it is to be able to let her try things like dance and gymnastics. I have so looked forward to doing normal things like this with her and just Thank God over and over for keeping her healthy enough to allow her to do this!

She loved being able to attend the Annual Easter egg hunt in our neighborhood. She ran to hug the Easter bunny, and thought filling her basket with pretty plastic eggs was so cool! Chris and I cracked up when she opened up a plastic egg after the hunt and gasped. “Mommy! Daddy! There is a pwesent in this egg! Oh my goodness! Its candy! This is so much fun! Do you think all da eggs have pwesents?!” She sat down right there in the grass to open up all her eggs she had collected to check out the “pwesants.” Lol.  The smallest things give her such joy and it totally melts my heart.

Friday April 3rd, it was back to the cancer clinic for sedation, chemo and 4-5 hours of infusions. We were actually a few minutes early to her appt due to it being spring break week for a few counties, making traffic less chaotic. I was thankful Chris was able to join us for the sedation part of the day, because my nerves are always a bit rattled during sedation….but Kaylee? Kaylee whipped off her shirt for them to access her port and through tears, she said “I so brave!” We had a great anesthesiologist who allowed K to “help her” push the propofol through her IV line of her port to sedate her. Everything went fine with sedation. I met with her Dr after her sedation who said all her blood counts were terrific. (Thank you Lord.) I showed him Kaylee’s fingers and toes which looked like they were peeling from sunburn. Did you know that chemo not only kills cancer cells, but the good and bad bacteria in your body? Yeah, so K has these peeling fingers (that apparently are turning painful for her) and it is because of chemo. They prescribed her a cream to put on her fingers and toes each night, because she now has a non-contagious skin infection that we are hoping will get better very soon. (Gross, right? Poor girl.)  Kaylee was happily surprised when she received a super sweet Easter basket once we were in our Infusion room.  An anonymous family donates over 100 Easter baskets for the kids at the clinic every year, and Kaylee loved it.  She was done with everything around 3ish, and we headed home.

It was Easter wknd, and I was so sad not to be able to attend church for Easter as it such an important day to recognize as well as a personally important day for our family, but we have tried to attend church while Kaylee is on steroids numerous times. It is just a bad idea overall, so Chris and I watched Andy Stanley’s message on TV.  We had an Easter basket for Kaylee to discover and Chris set up an egg hunt for her. She seemed to be in pretty happy spirits all day despite it being 2 days post major chemo. It was around dinner time that she complained of tummy pain. We gave her the zantac that is supposed to help during steroid week and trucked along with the bath, bedtime stories, prayers and bed routine. Kaylee woke up just about every 45 min. At midnight, Chris heard her make a choking sound and looked at the monitor to see her leaning over her bed to throw up. I went to get the Zofran while Chris ran to get K. By the time I got upstairs she was crying about having vomit on her pajamas and apologizing for throwing up, poor girl. We kept telling her it wasn’t her fault and everything would be fine. I got her cleaned up and changed while Chris stripped her bed. Once we had her bed re-made, she had her Zofran, and quite a bit of cuddles from us, we put her back to bed after I prayed with her. Little one showed up not 30 min later at our bedroom door, holding her sippy cup of water and her 2 favorite stuffed animals with tears in her eyes and said “I sleep with you guys? I don’t feel well.” Who could possibly say no to that sweet face, especially after she threw up earlier?? Not us. Needless to say she slept with us that night. It is steroid week, so just about every night this week, she has either snuck into our room late at night when I am too tired to argue (or get out of bed to take her back to her room) or she has screamed bloody murder (which jolts us out of mid-sleep into panic mode thinking something is wrong) and she complains that she is hurting, and somehow winds up in bed with us. So, I am actually writing this after a full day with Kaylee on very little sleep from last night feeling thankful that tomorrow is the last day she’s on steroids for this month. Granted, she gets chemo orally every single day and 2 chemo meds on Fridays…but somehow the steroids are the worst.

I would say overall, we have nothing to complain about, even though I just did…lol. Really, there were so many good days that outweigh the bad, and she is finally able to do a few normal things kids her age get to do! Our daughter is a mixture of sweetness and sass, laughter and tears with an unbreakable strength that baffles me. On a daily basis she can drive me crazy as well as make me want to cuddle her as much as she will let me. I would let a train run over me for that little girl, and my momma- bear instinct over her is something fierce. I find myself so thankful that the Lord entrusted me to be her mom! What a precious blessing it has been to watch her grow up so far!  I always say I know the Lord has big plans for her and this is only the beginning of her story, and it is true. Just the other night she almost brought me to tears when after I prayed with her before bed she looked up at me and said “Jesus loves me, and youuuuuu and daddy…and He’ll make me feel betta, right mommy?” I got choked up a bit b/c I was not expecting that, and I said “That’s right honey; Jesus loves you more than you can imagine and He will make you feel better. He is healing you, and we thank Him every day for giving us you.”

Kaylee has a little less than 8 months left of this battle (God willing) and I ask you to join us in prayer for her to finish this battle strong, and healthy! We thank you all so much for following her journey so far, and continuing to uplift our family in prayer. We are so thankful for each of you!

#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.”

**For more pictures of how K is doing, you can follow KayleesBattle on Instagram

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~.

Update coming soon!

3/2/15
IMG_1982

We apologize it has been so long to update everyone on how K is doing & will have an update very soon! We have quite a few things to share, but (spoiler alert via the picture) one thing we will talk about is how thrilled we are that Kaylee’s face is on quite a few billboards around Atlanta for the CURE organization! The picture of one of the billboards (above) is located in Buckhead Georgia.
She has her Nxt chemo appt at the clinic coming up, so I’ll try to get a full update by mid week before her appt.

Hope everyone is having a great week & please remember to #PRAY4K!

Jeremiah 29:11

Duffy, Chris & Kaylee
*************

God is good!

2015/01/img_1377.jpg

Kaylee had her blood labs this morning & I can barely contain my excitement over the news of her counts!! I finally got a call with her counts before dinner tonight.
This little one more than tripled her ANC count!!!! 😳🙌 Her ANC is so important bc it is the white cells in her body that can fight infection coming her way, so when that ANC count is low, we are pretty much confined to our house & maybe a really quick grocery stop to be sure she won’t get sick.
So, her ANC count went from 370 to 1,230 in a WEEK!! That is amazing & it’s all God!! Her hemoglobin also went up to 11.6! (huge answer to prayer as well!) Her platelet count remains steady too, so I am bouncing off walls to be able to get her back out on play dates & have friends over to visit! Happy happy happy!!!!

She has been cleared to start back on daily chemo as of tonight 😝 but at 1/2 the regular dose, so we are praying her counts remain steady. Her Nxt appt at the cancer clinic is Feb 9th, so thankfully no more blood labs until then. (K kinda freaked out when I took her for labs today crying “no arm blood!! No arm blood, mommy! It hurts!!” (This is bc of her labs last week for virus testing. The nurse had to get blood through one of the veins in her arm instead of a finger prick.) Once I assured her it was just going to be a finger prick today, she calmed down and did pretty good. Of course she was thrilled to get stickers when she was “alllllll done” with labs.

I would say today’s results are a huge relief and MAJOR answer to prayer and we cannot thank y’all enough for praying for our girl!
Less than 11 months left of this battle and we are still behind Kaylee cheering her on & relying on God to take this cancer & destroy it!!
Thank you again & we humbly ask you to please keep Kaylee in your prayers!
Xoxo,

Duffy, Chris & K
#Pray4K
Jeremiah29:11~
“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.”

———————-

Good news & Bad news!

2015/01/img_1301.jpg

1/27/15
Super quick update before K wakes up from her nap:

The super great, praise God news is K’s virus test just came in: NEGATIVE!! 👍👍
The bad news is: Kaylee’s ANC count (white cells that fight off infection) plummeted. (Booooo!) We are housebound bc her ANC count was 370 making her highly susceptible to getting anything. She will continue her chemo hold (which crazy enough, does not affect her end of treatment date for Nxt December.) Her Dr now thinks her body is trying to fight off the cold Chris had last week.
We are continuing to pray for higher counts, so we can let her finally have some play dates!
In other news- she is talking a mile a minute to the point where I can’t even translate it all, and her hair growth is amazing! She’s got a 70’s wave going on in the back & I’m getting excited about the idea of possible pigtails in a few months! She’s obsessed with Playdoh & anything Tinkerbell fairy or princess related. It is a pretty fun age despite trying to teach her the word “no” when we ask her to do something (I.e put your toys away) is not allowed! Lol.
Time to go get her from her nap, so we
will keep y’all updated on her Nxt counts when we receive those!
Thank you for all your prayers!!
Please please keep praying for her! House arrest is not fun!

Xoxo
Duffy, Chris & Kaylee

#pray4K
Jeremiah 29:11
———————–

Half of the CBC Results!!

1/23/15

We took Kaylee for her CBC & virus tests today and although we waited quite a while in the waiting room & the vein stick was a bit harder for her than we expected, it was a blessing that the nurse we had was so incredibly sweet & got K’s vein on the first try. Kaylee recovered quite quickly when the nurse let her pick out a few stickers for “being so brave.” 😊
We have felt so supported in prayer all day from family & friends and we anxiously waited for the results (the virus test results won’t be known until Tuesday.) I called the clinic a few times throughout the day to see if the CBC labs were in & finally at 4:30 (when the clinic closes) the nurse said “I’m sorry Duffy, under Kaylee’s name it says her labs are still processing. Unless it’s urgent, we will call you Monday morning with the results.”

I don’t really do well with waiting. So I waited another hour, and then called the On call Dr and said “it’s been 7 hours since her CBC, please tell me you know what her ANC & hemoglobin count is!”
The Dr said “well to be honest her ANC count says pending… But her hemoglobin is here.”.. (PRAYER WARRIORS- this is cool!!) “There really isn’t an explanation for this.. Somehow her hemoglobin count went up! Her hemoglobin went from 8.9 to a 10.7!! I wasn’t expecting it to go up at all, so this is odd, but good for her!” I said “it’s all prayer really! It’s a God thing. Wow!!” (Doing a happy dance in my kitchen at this point.) The Dr said “all her other counts are normal too but we will need to wait on the ANC.” (Not too worried about her ANC count bc it wasn’t drastically low on Tuesday.. Just not as high as they wanted it to be.)
GOD IS SO GOOD!!
We are so beyond thankful for all the prayers these past few days y’all!! I can’t even put it into words since “thank you” doesn’t seem like enough!

One of my friends txted me today with “you ok?” I said “If Kaylee is ok, I’m ok!😊”
Well, Kaylee is ok and thanks be to God!! Still a fight goin on against Leukemia but she is one heck of a fighter!

We will hear back about her virus tests on Tuesday and I will be taking her to the cancer clinic on Wednesday morning for more blood tests, so we will keep you posted!

Thank you again!! Enjoy your weekend!
Xoxo
Duffy, Chris & K.
Jeremiah 29:11
#PRAY4K

Virus? What virus?

Duffy (Kaylee’s mom) blogging

1/22/15

I apologize that I can’t give a detailed blog update like I normally do about how Kaylee has been doing. We have other issues that have come up this week that are a bit more important to share. This quick blog will be for those that are confused and have questions about what is going on with K’s blood.

When Kaylee last went to her chemo appt on January 8th, her ANC (white blood cells that fight off infection) count was 240. That is really low, (she is neutropenic again) yet she still had to get her Vincristine chemo treatment through her port & Methotrexate chemo in her spine when she was sedated that day.  The Dr. told us that although she still needed to do her steroid week, they were suspending her daily chemo to allow her a week to get her counts back up.

I took K to get her labs done this Tuesday Jan 19th and was pleased to get a call from Nurse Mary from the cancer clinic late afternoon on Wednesday with her lab report. Until Mary said the lab report didn’t look good.. The first issue is Kaylee’s hemoglobin keeps dropping. Her hemoglobin was 12.2 four weeks ago, 9.9 two weeks ago and Tuesday her hemoglobin was 8.9. (A hemoglobin count of 7 or below means she needs a blood transfusion.)This isn’t normal. The 2nd issue is that Kaylee’s ANC was expected to go way up. The Dr was surprised to see that her ANC count was only 740 on Tuesday after being off chemo for over a week.

Nurse Mary explained that Kaylee’s body must be trying to fight off something for her ANC count to still be so low ( I looked over at Kaylee who was next to me at the kitchen table  playing with playdoh looking a bit pale, but acting fine).The first thing Mary said was “We need Kaylee to get a virus test. We think she might have the Parvo virus, but we will be checking other viruses as well. That’s when I said “Can you spell that? I thought you just said Parvo, with a V….which I have only heard about from the Vet when I take my dogs in to get their shots…and that can’t be right…” She said “Oh, the parvovirus doesn’t affect just dogs. Parvo is also a virus about 90% of kids that are in school have had, and kids with a suppressed immune system have a hard time fighting off. People cannot get parvo from dogs and vice versa, (It is a different virus strain) but she can get it if say, another kid coughed or sneezed near her that had parvo. Meanwhile, that child probably never knew he had the virus, b/c if a child with a healthy immune system gets that virus; his/her body would just naturally fight it off, no problem. The problem with Parvo for Kaylee (if she has it) is that Kaylee has a weakened immune system already, and Parvo can cause an anemia crisis or chronic anemia in her and blood transfusions will be needed often (among other issues.). Mary asked if Kaylee had any form of a rash, and I said “Yes, she has a really small rash right below her eye, but I brought that up when we were at the clinic last and the Dr said it was probably caused by the Methotrexate chemo b/c Kaylee has such sensitive skin.” Mary just said “If she does have Parvo, the rash is good, because that would mean she is not contagious.”

Naturally I passed off the news to Chris who had questions I didn’t even think of, and we had to call Nurse Mary back, after Chris looked up medical notes about the parvo virus mimicking a Leukemia relapse, which of course put me in a small panic, near tears. Mary assured us that the “R word” is not even a thought right now. Kaylee has responded well to chemo, they just need to figure out what virus she could be trying to fight off.

SO! Tomorrow, Friday (1/23/15) we will be taking Kaylee to the Children’s Hospital of Atlanta Satellite Medical Office near us, for Kaylee to get a peripheral stick (blood drawn from a vein in her arm) to get a CBC and test for a few possible viruses. This causes both Chris and I anxiety, b/c she hasn’t had to be poked in a vein since she was diagnosed. She has either had to get her finger pricked or her port accessed. This will be new to her and I’m not a fan. I am clinging to the devotion today in the book Jesus Calling to ‘trust God with every aspect of our life. To trust Him during all our situations, every difficult challenge, anything that tends to make us anxious, and search for His way in the midst of all the circumstances.’ Such a much needed reminder today!

We will be praying for higher counts and no virus to be found! We will be praying for our daughter to be calm so the tests can be over quickly. We will remain faithful that God is healing her of her Leukemia and can rebuild anything that her little body needs help with. He created her blood, He can heal it! So thankful she has been playing like normal and doesn’t seem to feel crummy!

Please Lord; just let her become healthy again!

We will update the blog when we get her count report back. Thank you guys so much for all your prayers this week!!!

Don’t forget to please;
#PRAY4K

Jeremiah 29:11- “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”

Sedation & chemo tmwr!

1/7/15

Happy New Year!!

As much as I wanted to be able to sit down and write an update on how Kaylee has been doing, there is not enough time tonight. I will say, praise God she hasn’t gotten sick & I am so grateful for her daily smiles,cuddles & energy!

*note~ After reading the post below, I realized this became more of a rant than anything else. Sorry bout that.. We all have our days..*

We have a full day ahead of us tomorrow! The cancer clinic is swamped with kids, so we will be taking Kaylee to get her vitals taken, her port accessed, and her Vincristine chemo at the cancer clinic as usual. Then, one of the nurses will usher us across the street to the CHOA hospital “day surgery” where K will be sedated, receive chemo in her spine & eventually de accessed.
The issue here is that Kaylee is usually sedated first…and then she’s able to finally eat & drink while receiving her other chemo. Tomorrow she will have to wait longer than she ever has, to eat or drink because her sedation is after everything else…and it’s at the hospital😥. I have tried everything from getting the date changed,to seeing if there is any way she can get sedated first, but I was not successful. Chris and I are not happy about this (to say it nicely) bc who honestly wants to see their 2 year old wait hours and hours without being able to eat or drink a.n.y.t.h.i.n.g ?! It is mean and ridiculous to do to a child, and we are praying (at this point) that she’ll be done before lunch, but that also is not looking possible. (Sigh)

So, our prayer requests for tomorrow are a bit different than usual. While we still ask for prayer for Kaylee to be calm while her port is being accessed, her chemo to be mixed accurately & efficiently, prayers for 0 negative side effects from the chemo treatments, and that she will be calm for her port de access, BUT we are also asking for a few more prayers. Prayers that Kaylee won’t have to wait long to eat or drink.. That somehow she will get sedated quicker than we are told (a safe sedation at that.) We are praying for a smooth, quick day for her! She will also start steroids tmwr, so if you’ve read our blog before.. You know that the nxt 5 days can be a bit rough.
Chris and I both know that prayer can change everything! We’ve seen so much proof of that during this battle,so thank you for being our prayer warriors! God truly has been & is so good!!
Hoping & believing for the best tmwr, and we will update you on how it goes & how she is doing soon!
Jeremiah 29:11– “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”

#PRAY4K

Xoxo,
Chris, Duffy & Kaylee
*************************