Quick update: Nov 19th

I took K to get her blood labs done this morning. She was fearless and was given 3 princess stickers (she has insisted on carrying around all afternoon!) 😊
We received a call from nurse Mary at the AFLAC clinic later this afternoon. Kaylee’s ANC count has to be at least 750 to be strong enough to withstand the upcoming methotrexate chemo drip. Her count today was 1400! Yay for such a high Illness fighting white cell count!
This news means that we check in to the AFLAC clinic early Thursday morning for her to be sedated for a lumbar puncture & chemo injection
in her spine. Once that is over, they start her on a 24 fluid drip & we will be admitted to her hospital room for the wknd. Friday she will start the scary 24 hour Methotrexate chemo drip, and Saturday will be a full day of fluids to protect her kidneys from the chemo. We are hoping to be discharged from the hospital Sunday afternoon (K turns 21 months old on Sunday!)
We are praying for a good night of sleep tonight & tmwr so she is well rested before all of this. We are also praying away all the possible nasty side effects from the chemo (side effects from this weeks chemo is listed on the previous blog entry.)

I did want to mention how nice it has been to have our little eater back!! Since Kaylee has been off chemo for 2 weeks, she has just started to love all of her old favorite foods again! AND she has gained a pound!! Such an answer to prayer! We need that weight on her before she hates food again due to the chemo. 😝 Surprisingly enough, her sleeping has been our biggest battle this past week! She has been the hardest little girl to get to sleep (or even to take a nap) & Chris and I are exhausted. So we are asking for prayer on this.
Thank you for all the prayers for her eating! (She is asking for her 12th ritz cracker as I’m writing this. LOL. Not such a little snack as intended before dinner, but have at it K! )

Last thing, since Friday will be a tough chemo day for K, we want to show her how much support she has! If you have purchased a PRAY4K shirt, please try to wear it during some point on Friday & we will be wearing ours 😉

We will update the blog as we can while we are at the hospital this week! Again, thank you for praying for our little girl and this cancer battle she is fighting!
#PRAY4K
Jeremiah 29:11

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November 14^th

Duffy blogging

How amazing it is to be home! Yes we are home, and not in the hospital as planned for K’s chemo drip this week. I’ll tell y’all about that, but first I need to catch up!

We were able to be discharged from the hospital last week after Kaylee was fever free for 48 hours and sent home with meds to encourage her appetite and an antibiotic.  My mom and step-dad, Ron came in from Florida to visit, which was a total blessing! They took her for a daily stroller walk (which she loved, and it gave me a few minutes to myself every day, which was so nice.) The first few days were a bit of trial and error on getting K to eat, but my mom and Ron were ready to try everything! If you have not been reading the blog, Kaylee is underweight since chemo makes her not want to eat anything, and to avoid a feeding tube being put down her itty bitty nose, we need her to gain weight. Every day this week, her eating has gotten a bit better (thank you Lord) and we are praying for her appetite to continue to increase. Kaylee enjoyed her grandparent’s visit so much, and she even started sleeping better once my mom suggested we try putting her in warmer pajamas. I thought K would be sweating because her room is the warmest room in the house, but apparently not. (Go mom!)

I was dreading taking her to the Wellstar lab on Tuesday morning to get her blood counts. Her counts would inevitably decide for us if we would go back to the hospital this week or next week for a 3-4 day stay for a chemo drip. Our little warrior doesn’t even tear up walking in that building anymore, and in fact, she is so used to the same two sweet woman who always do her labs, that even her finger prick didn’t make her cry this time! She sat there calmly only asking “All done?” a few times, as she seemed a bit impatient that it took longer than usual to get her blood going. (That means a strong platelet count, so that is a prayer answered for me!)

I was anxious to hear what her counts were. We knew ahead of time that last week she had a count of 2 (just 2) ANC cells (white blood cells that fight off infection) when we were discharged from the hospital, and she needed to have a count of 750 to be considered stable enough for the chemo drip. (I secretly prayed she wouldn’t have that high enough of a count yet, so we could delay the hospital trip and have one more week with Kaylee Chemo-free.) When the nurse at the Scottish Rite AFLAC Clinic called to share K’s counts with me, I may or may not have started jumping up and down smiling. ;-> Her ANC count was 108. Good enough to have some fight back in her, but not good enough yet to go to the hospital. Nurse Mary said that Kaylee should be up to 750 next week, but I need to take her to get blood labs done next week again to be sure. If her counts are indeed high enough next week, I learned that Thursday (Nov 21^st)  K will be sedated for a lumbar puncture & chemo will be injected into her spine before they even begin the 24 hours of fluids she will need before the 24 hour Methotrexate drip. She will have been chemo-free for 3 weeks at that point and they need to know how many leukemia cells may be around (praying for none!)

I always feel a bit uneasy knowing she will be sedated again, but we will be praying for her Dr’s and nurses. We are also praying for a calm Kaylee while they access her port, and that they sedate her long enough not to wake up WHILE they are doing the spinal tap, but short enough not to flip out when she wakes up. I am also nervous (yes, I keep repeating Philippians 4:6) about the Methotrexate they will be giving her. This chemo is not easy to say it nicely. We have been told to be ready for: vomiting, diarrhea, more hair loss, fatigue, mouth sores, muscle weakness, and bone & joint pain. (Now imagine all of this happening to your 20 month old child! Sigh.) So, I am just praying against every single side effect that could occur, reminding myself that Gods got this!

Needless to say, I am fully enjoying spending time with my little girl while she is chemo-free (and a total daddy’s girl now. She asks for Chris randomly throughout the day when he is at work. It is heart melting to watch her run to hug him when he gets home at night.) She is talking up a storm and loves to ‘read’ her books to me, which is really cute. She says a very southern sounding “Hiiii” to just about anyone that walks past her and loves ‘helping’ me with household tasks. Some days are a bit trying, as the ‘terrible two’s’ seem to have come early.(For example: She threw herself on the floor today, crying hysterically and kicking the ground when I asked her to stop throwing her pieces of cheese to the dogs. Sounds humorous to people without kids, I am sure. To the people reading this that have kids; I know you know what I am talking about to some extent…. (right?)

Speaking of cheese, I forgot to mention how her eating is going! It has been a huge prayer request and I meant to tell y’all how every day is getting better! (Thank you Lord!) Now, this may be b/c she hasn’t had any chemo in two weeks, and things may taste better, but I prefer to think that God is answering our prayers! :> She is no longer just eating the beloved Doritos (although we have a bag on standby just in case ha-ha) but a variety of food! She even started liking orange juice & fruit pouches again which makes me so happy b/c she so badly needs fruits and veggies in her diet to help her fight this battle (not to mention Vitamin C is huge in fighting cancer!)

So, now y’all know the things we are really praising God for, and a few of the things we are praying for, while next week is fast approaching. Every night before bed, I pray with Kaylee and first and foremost I am always asking God for complete healing, so I am asking y’all as K’s prayer warriors to continue praying for that, as well as the things we as a family have yet to face.

We will continue to keep y’all updated, and are continuously thankful for y’all!  OOH! Also, I am working on an idea for next Thursday that I will share later this week with you all, which will include all of the people that have ordered the PRAY 4K shirts so be on the lookout for the next blog post!

Chris wanted me to remind everyone, that if you want an update sent to your email that we have updated the blog, click ‘follow’ on the bottom of this page. Also, please feel free to check out KayleesBattle on Instagram for the latest pictures of Kaylee (or scroll to the bottom of this page and a few of the latest pictures should show up as well.)

As always, thank you for reading, praying for our family, and sharing K’s story! We love y’all!

#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.”

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November 6^th

Duffy blogging

When we ask for prayer warriors, man do y’all pull through! Chris and I are blown away by the amount of love and support people are showing our little girl (and us) through prayer! We heard stories this past week of Bible Study groups praying for K, mission groups in other countries praying for K, past next door neighbors praying for k, old friends from Elementary, middle school, and high school praying for K, and just mom and dads that have somehow felt a connection through Kaylee’s story that have felt the urge to pray…..and for that we are so incredibly thankful!

If you have been reading our blog, you know that K had a very high fever on Sunday night with 0 illness fighting white cells (ANC cells) to help her out. This is very scary to any parent that has a child fighting off cancer b/c even a small cold can become life-threatening rather quickly. We are still working through a few glitches (will discuss that in a min) but we are thankful that she has now been fever free for 24 hours and God willing, we will be discharged tomorrow afternoon!

Our biggest scare occurred when a nurse told me Kaylee was showing every symptom of having Cdiff (a resistant bacteria) and they needed to test her for that. Now, if you know my past, then you know I know about cdiff from working with elderly people. Not a fan of cdiff! Kaylee and I were put on isolation all day Tuesday waiting for the results. I learned that a positive test result would be putting us in isolation (stay in the room, no visitors) for 13 days straight! EEEEK!  I cannot describe the happiness that overwhelmed me when on Tuesday late afternoon the nurse said “Duffy, guess what?!” smiling as she peeled the large ISOLATION sticker off our hospital room door. I said “NEGATIVE????” she smiled and said yep! K’s test showed she is negative for Cdiff!” (Thank you LORD!)  I immediately took K outside to the wishing pond so we both could get some much needed fresh air! J

I met with Kaylee’s Dr this morning that also came in with good news….and bad news. She said “Kaylee’s ANC cells are still 0, but we should see those getting better soon. Her bacteria culture slide showed no growth, so what brought her here must have been a virus. She has been fever free so if all goes as planned we can send you home tomorrow with some antibiotics for her to continue. However, I have decided to stick to the plan and have K admitted next Thursday at the hospital for her 3-4 day chemo (Methotrexate drip)”  I was concerned and said “She has 0 ANC cells…y’all said she would need at least a ANC count of 750 for her to do the chemo drip….you think she will be that much better in a week, to be able to withstand the chemo?” the Dr said that she thinks Kaylee will be ready, but only labs will tell….  SO I have to take K to get a blood draw early next week.

Although we are happy to have seen quite a few smiles and a cute “Hiiiiiii!!” to everyone that passes by her, Kaylee has barely eaten. We have tried different options at every meal, and so far a handful of Doritos is what she wants. When I say a handful, I mean throughout the day, a handful of Doritos is all she is eating. She has been put on Periactin, as of last night which is supposed to make her hungry, but has not started working. The Dr told me today it could take a few days to work, so I am waiting for the magic of this medicine to take effect.

In the meantime, I am looking forward to my mom and stepdad coming in to town; ready and hyped up to get K to eat! (I think that is their goal of the trip.) We are so excited to go home tomorrow. Living in the hospital for even a short amount of time (no matter how nice of a hospital it is) makes you realize how much you take your own bed, shower and privacy for granted! Wayyyyyy too many people have seen this girl without makeup on this week!

So thank you, thank you, thank you, for all the prayers!! K is fever free and seems to be returning back to her sassy yet sweet self! God is so good!  We are praying for a healthy and happy upcoming wknd. We are praying she gains an appetite and puts on some weight & sleeps well.  No idea what her blood counts will be next week and certainly not ready to repack for another 3-4 day stay at the hospital, but God already knows the plan, so we will just follow along and be thankful for all the  good and pray about any of the ‘glitches’ that come about. He has heard your prayers, and we intend on returning the favor, so please let us know if we can pray for you as well!

Also, if you get a chance, please pray for Grant Terrell. He is just a little older than Kaylee, and we met Grant and his family at the Chemo clinic. Grant is fighting an even larger battle than Kaylee with a diagnosis of stage 4  Rhabdomyosarcoma, but you would never know it from his super cute smile! Grant was just rushed here to AFLAC cancer section last night with a fever, and we want him to get better soon! His mother is an awesome prayer warrior with a HUGE heart, and we want a prayer of healing ALL over this family! (you can also see updates on him on the facebook page; Pray for Grant Terrell)

I will update later this week on how our return home is going! Thank you for taking the time to read, pray for K, and thank you to those that have ordered a PRAY4K shirt this week! We love y’all!

#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.”

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11/3/13

Duffy blogging

So our little rockstar got a fever yesterday at home. We took her temp all day (which ranged between 99.2-99.8) and finally after I tried to rock her to sleep at 7:45 pm and she cried as soon as I put her in the crib, I had Chris switch with me. He took her temp (I had done the same 20 min earlier) but this time her temp was almost 102! He told me to finish packing our go bag and to call the clinic. I did, and got the “Go to the emergency room” from K’s Oncologist who was luckily the on-call Dr last night. They started her on antibiotics & fluid right away, and after an hour, they were able to give her Tylenol. We were assigned to the room we were first given in August, and her fever slowly came down. By 2am, (I’m sharing the hospital bed with K,) I felt heat radiating from her and asked the Dr if we could get her some Tylenol. Her fever was 102!

We got her blood counts back. For those that don’t know, A normal child will have a ANC count (white blood cells that fight off infection) between 3,000-5,000. We found out on Chemo this past Friday that her ANC count was 30 (gasp!) So we would put the original timeline of getting all day chemo in the hospital (that was planned for this Thursday) on hold, and plan it for Nov 14^th, to allow her counts to come back up. (We were so happy we could give her a 9 day break from all chemo!) Well, we found out last night her ANC level was 2 (yeah, 2!) this morning her ANC count was 0! (I had to have the nurse repeat that to me twice b/c I thought I heard her wrong.) This means that our little 20 month old has 0 white blood cells that can help her fight off any infection that comes her way! Seriously dangerous! The only way to help her ANC count to go up is time. There is no transfusion that can help this. This also means her all day chemo (3 days in the hospital for that) will be pushed back another week (praying it won’t be during Thanksgiving.) Her hemoglobin was also dangerously low, so I’m typing this as she is asleep getting another blood transfusion. I met with the Dr earlier who said, this is normal b/c her body is just trying to come back from chemo and will take a few days for her counts to come up. This also means, she cant leave our room without a mask, and if you know Kaylee…that’s not gonna happen. She’ll rip a mask off in a hot minute!

K was lucky to get a visit from a girl we have met at the chemo clinic named Kayla, who was getting discharged from the AFLAC section to go home today. That was the first semi-smile I saw out of Kaylee today, so thank you to Kayla and her mom Maureen for visiting us before leaving.

Kaylee is definitely fighting off an infection because even with the constant drip of antibiotics, and Tylenol every 4-5 hours, she has not had a temperature below 99.5 degrees today. We were just told that we will be here in the hospital for a minimum of 4 days. Kaylee is not eating a thing, or drinking (so I am thankful for the fluid drip that is keeping her electrolytes up and keeping her hydrated!)

So before she wakes up: our prayers: We are praying for God to heal her of the Leukemia, heal whatever infection she has going on in her body, and bring our happy, sweet spirited (yet sassy) baby girl back. We are praying that all her counts rise and that we won’t have to stay in the hospital longer than 3-4 days. We are praying that she will start eating and drinking, and that the Mylicon drops that the nurse is bringing in right now will help her tummy feel better!

Thank you for all the prayers and support! She needs those prayers! We will try to keep everyone updated on how our little one is doing! So thankful we caught her fever spiking when we did last night. It is time to get better K!

#PRAY4K

Jeremiah 29:11

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K’s fever has now gone up to 101.8 and we are headed to the hospital!!
Please pray!!

Nov 3rd
I plan on updating the blog tonight, but wanted to share a prayer request: Kaylee has only eaten 2 bites of breakfast ALL day! Shes drinking water & milk, but wont eat. She has had a fever all day between 99.1-99.7. If her fever gets up to 100.5, we go to the hospital. We already know she needs to gain weight, so not eating is not helping. 😦 She clearly feels awful Bc she has been crying on and off all day and has refused to nap.
Please say a quick prayer for her… We hate seeing her like this… 😦
Just want her to feel better & to eat.
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Sent from Duffy’s iphone

Just a quick update-
I will be taking K to get bloodwork tmwr bc her oncologist believes she will need a platelet transfusion sooner than her scheduled chemo on Friday.

We are also scheduled to be in the Scottish Rite Childrens Hospital for 4 days next week Nov 7th-11th (they THINK it will be those dates bc it all really depends on how’s she’s doing/blood counts etc.) This hospital stay will be a full day of fluids before getting a 24 hour drip of Methotrexate chemo & then a full day of fluids after the chemo drip to protect her kidneys. We are told to expect her to feel run over/vomiting, more hair loss & developing mouth sores.😥
So far she has good moments and bad moments & we never know if it is the chemo causing her to act a certain way or the ‘terrible twos’ beginning.The Drs were right when they said it is hard to discipline a child with Cancer… Especially one that can’t verbalize exactly how she feels. She has, however pointed at her tummy a few times and said “hurt, mommy.” which breaks my heart that I can’t make it better.
We are trying to let K be as much of a “normal” kid as we possibly can with a bit of extra snuggles & of course extra antibacterial hand gel! 😉
The past 3 nights have been a bit rough and I’m praying for sleep (for all 3 of us), for her appetite to increase,and for The Lord to heal her & take her pain away. We will continue to help her fight this mountain of a battle while thanking God that she was diagnosed with the ‘best type of Leukemia’ and not another type that has a lower cure rate.
We ask for prayers to continue to be lifted up for Kaylee (who is now 20 months old!) and want to thank everyone who has continued to do so! There are never accurate words to express how thankful we are that y’all care enough to keep up with how she is doing & sharing her story with others!
I will try to update later this week with a bit better detail.
To the parents that read this, give your kids extra hugs for us tonight & remember to always… Always..Be thankful! 💕

#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.”
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Sent from Duffy’s iPhone