Counts dependent

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Duffy (mom) blogging
Jan 9,2014

What a week! As I was chanting away getting sick while packing tonight,(I feel crummy) I realized I hadn’t written an update since last week. So here ya go- 🙂

Every night before bed, I pray out loud with Kaylee. God has been answering many of these prayers such as; Kaylee sleeping in her own crib (most nights), helping me find a way to make each day a great day for K, keeping any sickness away from her, and to hold steady on her answer to prayer-fantastic appetite throughout the day. (As of today she weighs 23.7 lbs, which is super!) We are thanking The Lord for bringing a blessing of new friends into our life with kids K’s age to play with and we are thankful for amazing friends & family who made a point to visit K when they could this week! So many people said the same thing this week “she’s so talkative & happy! She has so much energy and the “Mommy, I do it!” attitude back!” She was dancing up a storm for all visitors, and if you follow Kayleesbattle on Instagram, you
have seen pictures of her with a giant smile on her face as she went down her new playroom slide (which she does atleast 100 times a day!) We truly thank The Lord for that energy & happiness!

Wednesday morning I took K to get her blood tests done. Again, I cannot say enough about Denise the lab technician who has fallen in love with Kaylee & vice versa. By mid-afternoon the Aflac Clinic called me with results! Kaylee’s ANC count (those darn infection fighting white cells) were still not high enough for her to withstand the upcoming 4 day chemo. Her ANC count has to be at least 750. Last week her ANC count was 600 and we were sent home. This week it was 700, but somehow the nurse said her counts might improve enough by Friday morning,(?) but there is no way of knowing without pricking her again friday to test it. (Poor K.) So we “should go ahead and pack up like we would for a 4 day hospital stay & arrive at the AFLAC Cancer Clinic at 8am just in case her counts are high enough to go ahead with her lumbar puncture & weekend methotrexate chemo drip.” Although at first all this did was annoy me, but i was humbled quickly by thinking, who am I to judge Gods timing? His timing is perfect and if K’s body is ready Friday, ok, and if not, there is an unknown reason and all I am to do is to trust God & know there is a reason. (I’ve never been a good “be still and wait” kind of person.)

So that is what we are doing. The car is almost fully packed, the alarm is set for 6am,and the house sitter (for our dogs) is on standby. Lol.
IF K is well enough for everything tmwr, then we ask y’all to join us in praying for a calm Kaylee while they access her port, that God will keep her safe while she is under anesthesia (for her lumbar puncture), to keep me healthy so I can be at the hospital with Kaylee, and 0 side effects from the heavy-hitter chemo drip that would begin Friday evening.
If her counts simply are not high enough, I will keep y’all updated.

We cannot thank y’all enough for all the prayers being said for K and our family. Thank you to the people that have ordered the PRAY4K shirts this week! They are being shipped out tmwr! We are so blessed by your comments on the blog & Instagram, so know those do not go unnoticed! I wish you all a happy & healthy weekend & we send a hug from our family to yours!

#Pray4K
Jeremiah 29:11
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Chemo delayed

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Delayed

So, we woke up at 6am & took Kaylee to the Aflac Cancer Clinic this morning. Her labs from yesterday had not come in yet so they needed to do another finger prick to test her blood. Turns out her ANC count (white blood cells that fight off infection) is too low to be able to do the chemo wknd at the hospital. Her ANC count has to be at least 750. K’s ANC count was 600.

Instructions are to get her blood checked on Wednesday (“preferably at a different lab.” 😦) and if her counts are better, we should expect her lumbar puncture & methotrexate drip to be Nxt Friday.
Thank you for your prayers! We will keep you posted on how next week is going. 😊

#PRAY4K
Jeremiah 29:11

A NEW YEAR!

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1/1/14

Happy New Year!

 I took a hiatus from blogging to soak up as much family time as possible. What a blessing it has been to have a few weeks away from the hospital! To catch up~ the last time we were in the hospital we were discharged on December 21st at 11pm at night after a 4 day stay for K’s chemo drip. The first few nights at home were a bit scary with Kaylee vomiting, and dry heaving from the chemo. I was livid that after calling the emergency clinic line one night and leaving 4 urgent messages, it took three hours to get in touch with a Doctor! That is insane! The Doctor that finally called us is Kaylee’s actual oncologist and she was not on call. She was just notified by the call center that her patient’s family was not getting called back by the on-call Dr and she seemed just as mad as we were that no one had called us back. Thankfully, we made friends with one of our favorite nurses in AFLAC who I texted, when a Dr wasn’t calling us back, so she told us what we could do to help K.

 By Christmas morning, Kaylee seemed to be feeling much better and we videoed her reaction to coming down the stairs Christmas morning, and it is precious! Last year at this time she was only 10months old and she took her first steps on Christmas day! This year was much more fun to see her get into unwrapping gifts and loving everything. Just seeing her generally feeling better made me so happy! Since Christmas, Kaylee has been her happy self (even though we have to give her chemo orally 3 days a week, it hasn’t seemed to affect her.) Also another amazing thing occurred; Kaylee started taking a nap again! I am so incredibly thankful for naptime!  I am still trying to tweak the timing of them b/c they are rather late in the day keeping her wide awake far too late, but it has helped so much having a few moments to get things done!

So, this leads us up to what comes next. Tomorrow I will be taking K to get her blood labs done, to make sure all her blood levels (and liver) are ready for the next 24 hour Methotrexate drip. This next hospital stay requires her to be sedated on Friday morning for a lumbar puncture. (ugh.) After that procedure, she will begin her 10-12 hours of fluids before they begin the chemo drip. We are praying for her levels to be great so we can honestly get this over with. We have already been prepped on what next month holds for our family with K’s treatment as she will move on to the next phase of chemo. It honestly scares me, and makes this phase look like child’s play, so we are trying to stay positive as she gets through these chemo drips, give glory to God for all that He has already done for her and not for one second doubt that He will heal her! Please keep K and our family in your prayers the next few days. We are expecting to be in the hospital from Friday to at least Monday evening.

We are so thankful for the prayers, sweet thoughts, and the gifts that have been sent to Kaylee! It has been such an odd feeling to be the recipient of prayers and thoughtful things when that is usually something we like to do for others. We feel very blessed and thankful for each of y’all, for taking in interest in reading about our life and how our little girl is doing. The only thing we allow in our brain is that Kaylee WILL be part of the 83% that will be beat this terrible cancer and that our Lord truly has His hand on her! I cannot wait for the day we can use the term HEALED! J

#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.”

Home w/ side effects

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Quick prayer needed!!
We are home but k is vomiting. She threw up her dinner and the Zofran we gave her when she was dry heaving. Waiting on a call back from the on-call Dr, but could really use your prayers for our little girl.
😦
#pray4K
Jeremiah 29:11

Here we go again

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Just a quick update-
12/18/13
We are on our way to the AFLAC Clinic. I took K to get her blood labs done on Monday and her blood counts & liver levels all came back good to go. This means we are headed back for round 2 of the 24 hour Methotrexate chemo drip right now.
Kaylee starts a saline drip today,and late tonight she begins the methotrexate with the saline drip to protect her little organs. After 24 hours of the chemo, she continues the fluid drip to flush the chemo out as quickly as possible. The Dr will be drawing blood labs every 12 hours to monitor her counts and methotrexate levels (at least I think that is right.)
So we are expecting to be in the hospital until at least Saturday.
(So thankful for family staying at our house to take care of our dogs while we are away!)

A huge thank you to the prayer warriors! A combination of The Lord and the Magic mouthwash made her chemo induced mouth sores vanish, and she has been eating a ton! (SUCH a huge answer to prayer!) The waking up every night at 1am (or multiple times every night) continued, so she ended up sleeping with us almost every night. She was getting chemo by mouth 3 nights a week, so she can sleep with us if she wants! 🙂

Please lift K up in your prayers this week. We are praying for kaylee to be calm during the port access today.We are praying away the nasty side effects from the chemo, and that God will ultimately heal her from this cancer!

Thank you for all the thoughts & prayers going out for our little girl! We are so incredibly thankful for you all!
We will try to keep you posted about how she’s doing in the hospital.
Until then… God bless y’all & enjoy your week!

PAIN

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Dec 9th

A Long Blog entry by Duffy (Mom)

I’ve been trying to write an update since we got home from the hospital Friday evening, but we only had one night that Kaylee went to bed and stayed asleep in her bed. Chris and I were able to cuddle up and watch a movie together….the rest of the nights have beena bit difficult. I was waiting to write about positive things that were happening..but today has just been I guess a breaking point.

To catch up ~ Kaylee was given a potent Methotrexate drip in the hospital and I was in awe of the fact that she never threw up once. (Praise God) She wanted to play all over the place and I was doing all I could to keep up & follow closely behind her with her pole of IV’s she was attached to. I posted pictures of her hugging her favorite Nurse Amanda, and her learning how to use a stethoscope with sweet nurse Kara. She would run up to the Christmas decorations and hug the fake reindeer, (run away from Santa) and squeal with happiness every time we walked down to the massive toy choo-choo train a family donated to the hospital. The Dr was pleased with how well Kaylee “cleared” the Methotrexate (we could only be discharged if trace amounts of methotrexate were seen in her blood test.) She was on 48 hours of fluid after the chemo to get that nasty poison out of her body as quickly as possible & protect her kidneys.

A ray of sunshine in the form of a sweet 12 year old was at the AFLAC section at the hospital getting chemo when Kaylee was. Kayla and Kaylee met at the clinic a few months ago (Kaylee was pushing around a kid sized grocery cart of fake fruit when she stopped to say hi to Kayla, and it was instant friendship!) Whenever Kayla sees Kaylee she makes a point to say hello. Well Kayla has the sweetest most giving heart of anyone I have ever met and her mother Maureen is just as amazing! I made a comment on Thursday to Maureen about Kaylee playing with Chris’s phone and calling Chris’s coworkers and his boss. (oops!) I let K use my phone and she deleted a few apps and phone numbers, so I was jokingly rolling my eyes to Maureen about trying to not let K see our phones. I had no idea that Kayla and Maureen were already planning something special for Kaylee. They had made a call to an AMAZING local organization called TEAM SUMMER. (Check them out!) Kayla was a recent recipient of a TEAM SUMMER gift, and she wanted Kaylee to be one as well. We were taking K on a walk, and when we walked into our hospital room, there was sweet Kayla on the sofa, Maureen, Summer’s mom Lynn and a photographer of TEAM SUMMER! Kaylee saw Kayla and instantly smiled and said “hey bud-dy!” Kayla read a beautiful card from Team Summer about what was going on and handed Kaylee a wrapped gift. When Kaylee unwrapped the gift, she learned that she was given her very own IPOD Touch! It looks just like an iPhone but she can’t make calls. She can download apps to play games & songs to dance to when she is bored at the clinic or the hospital! We were blown away by the thoughtfulness and kindness of not only Kayla and Maureen but Team Summer! They even bought her an indestructible case for it! I cannot even tell you how many times this has already come in handy! A huge Thank you to Kayla, Maureen and Team Summer! We are so thankful! Please pray for sweet Kayla as she continues to fight her very own cancer battle!

The wknd went pretty well. Chris and I were determined to try to knock out a few Christmas gifts for family because we are acutely aware of how soon we will be back in the hospital. In this phase of K’s Leukemia battle (Interim Maintenance Phase.) We will be back in the hospital for 4 days every two weeks for two months for the Methotrexate drip. Ugh. Kaylee had a great weekend and minus not sleeping well, we all have really enjoyed being home. I noticed her tugging at her mouth a few times Saturday night and immediately knew she was probably getting mouth sores from the chemo. Then, out of nowhere that evening when she woke up 20 min after I put her down to bed in her crib, she started gagging like she does before she gets sick. Chris ran, and grabbed her out of the crib yelling to me to call the clinic. She started dry heaving, crying and saying “uh oh!” The clinic told us to give her Zofran (which we were doing at that time) and to know that this was a normal side effect from chemo. We should call them back if she got sick after getting Zofran. The whole thing scared Kaylee and she stayed wide awake until 11pm. I finally laid her down in her crib and she slept great until 2am. She woke up crying so we just put her in bed with us, and (this part is awesome) we all slept until 9:45!! Chris and I were very thankful!

Sunday night she woke up pretty much hourly, and we finally gave up at 12:00. (Chris and I are night owls so it isn’t uncommon for us to be up till 12:30 or later every night.) She came to our room, watched the last 30 min of some sappy movie I conned Chris into watching and kept US awake trying to play until 2am.)

So that brings us to Monday. Monday wasn’t one of the best days to put it mildly. K woke up smiling and asking me for orange juice. With her on my hip, I got her cup of juice while getting coffee for myself. She smiled, took one sip of her favorite orange juice, looked at me like I had shot her and dropped the cup, grabbed her mouth and started crying. Oh crap. Totally forgot she probably had a mouth sore…ouch! I filled another sippy cup with milk, apologized to K over and over and carried her upstairs trying to calm her down. The rest of the day just went downhill. A dear friend of the family came over so I could assist her in making her annual Christmas cookies that she gifts to her friends. It is a tradition I have helped with since I was young. Sherry ended up practically making all the cookies by herself because I was tending to a very teary, very upset little girl all morning. If I so much as put Kaylee down, she would grab at her mouth and fall down and cry. It was very sad to see & Kids Tylenol wasn’t helping. Sherry tried cheering Kaylee up, but K was flat out unhappy. She refused to nap when I attempted that, and didn’t want to eat anything. By the time Sherry left to head home, I was exhausted trying to come up with something to keep Kaylee distracted, who at this point was grabbing at her tummy saying “mommy…hurt!” I was silently becoming increasingly angry at chemo; this poison that was supposed to kill this terrible disease, but was also causing my small child so much pain! I felt helpless and so badly wished I could do something to make it go away. For the millionth time, I wished I was given this cancer and not her. I was so thankful when Chris came home a bit early, and after watching my child in pain all day, I just went outside and cried. So drained. We went out for a quick shopping mission to buy a new Christmas tree star, and all Kaylee kept saying was “I go home” (she wanted to go home.) She didn’t eat much at all for dinner (we tried all mild foods) and when we put her to bed, she woke up four times, before coming to our bed at 2am.

I am blessed to have become friends with a nurse at CHOA. Today she told me about Magic Mouthwash for people with mouth sores. It has Benadryl, Mylanta and Lidocaine mixed in and I could swab Kaylee’s mouth with it! It would hopefully soothe her mouth. Eager to try anything, I immediately asked the clinic to call that in for Kaylee, and picked it up. Although it didn’t seem to help much tonight, I am looking forward to it helping more the next few days, so we will see.

We have been so blessed to have so many good days that we have had, but this week has just been very tough. As a mother, I so badly want to take any and all of her pain away, and it is so hard to watch. Chris and I are both stubborn people and I finally feel like that characteristic will help us. We will keep trying anything we can think of to help our 21 month old daughter get through this phase. We will just keep praying and fighting for her. Today while praying I said God you are so MUCH bigger than cancer, so MUCH bigger than mouth sores! Please heal them!

We ask that you help us pray our daughter’s pain away; pray that God will heal her mouth sores. We are praying for rest, for her to be able to eat, and most of all that God will heal her from this cancer! I remain faithful that this is just a battle that she will beat, and will come out as a living testimony of Gods graciousness!! Thank you so much to our prayer warriors & readers of our life! This week is tough on us, but as my mother keeps reminding me “This too shall pass.”

#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.”

Resuming The Fight

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December 2, 2013

Duffy blogging

It has been hard to explain what happened on Nov 21st, because even the Dr’s have no idea as to why Kaylee’s liver was inflamed. Backing up~ 2 weeks ago, Nov 21st, we had our bags packed in the car ready for our 3-4 day hospital stay for a harsh Methotrexate chemo drip that K had to do. Well, when they did blood work, they realized her Liver enzymes were too high. A normal person has an ALT liver enzyme of 80-100. K’s ALT liver enzyme was 638 on Thursday! This meant her liver was inflamed (and they didn’t know why) and because Methotrexate chemo in particular is metabolized by her liver, she could not do the drip. After getting chemo injected in her spine while she was sedated, we were told to come by the following morning to draw blood to see if her liver enzymes were any lower. We were told to take her off her medicine that caused hunger and not to give her any medication period.

I learned a lesson I have learned before. Don’t ever Google! Do not ever Google about things you are just learning about. Thursday evening I googled everything about high liver enzymes and all I kept seeing was titles with “Cancer of the liver.” I got myself all worked up and to be totally honest; freaked out. I prayed so hard with tears streaming down my face begging God not to let this all to mean that she had cancer of the liver.

I took her to the hospital blood lab on Friday morning (Nov 22nd) and received results that afternoon. I conferenced my husband in on the call with the Dr. She said they ran a ton of tests on Kaylee’s blood b/c her liver enzyme was higher at 942! (How is that possible? She hasn’t been on a single medication in 24 hours) They tested her for infections I had never even heard of, as well as all types of hepatitis.  She was negative for those. She did not have any signs of storing Tylenol in her liver, and tested negative for any active infection in her system. Her bilirubin was fine (which meant her liver was working properly.) Our Oncologist said she didn’t know why K’s liver was inflamed, but it clearly needed a rest from any medication. My #1 question~ “Could she have liver cancer??” K’s Dr said “Nooo, aw Duffy. No. she does not have liver cancer.  I am 99.9% sure of that.” (Deep sigh of relief and mentally thanking God.)  She said to enjoy the wknd and to take Kaylee to get blood labs done on Monday Nov 25th and she would call me with results.

I took my fearless little one to the blood lab on Monday afternoon. Kaylee smiled and said hi to her sweet lab techs that she is now used to. (They truly are so sweet to us!)  We did not hear any results until early Wednesday morning from Kaylee’s Dr. Her ALT liver enzyme had finally gone down a little at 752, but clearly not enough to do chemo. This meant that they were going to put off chemo a week so Kaylee’s liver could heal, and we would get to spend Thanksgiving at home! Yay! Time to buy a turkey! At this point, Kaylee has been off chemo for 4 weeks. A bit of hair is growing back and the girl is eating everything again. :> (she even loved a milkshake for the first time this wknd!)  Granted, the throwing tantrums at about everything and giving up her only nap of the day hasn’t been the best, but we are trying to enjoy every moment of the chemo break with her! Her liver inflammation doesn’t seem to bother her at all so that is nice! Her little feisty personality is on high, she is running everywhere, and booty shaking to all music which has us cracking up. Kaylee loved that my mom and step-dad came up from Florida for Thanksgiving. They stayed with us for 5 days and Kaylee loved all the extra attention. Chris and I even got a date day to watch the epic UGA vs Ga Tech game with our friends while Mom and Ron watched Kaylee! We were sad to see them head back home yesterday, but thankful they were here!

Tomorrow we head out to the Scottish Rite AFLAC Clinic to check Kaylee’s blood levels after lunch and if everything is ok, they will access her port, start the fluid drip and admit K to the AFLAC unit of the Childrens Hospital Of Atlanta. Wednesday morning she will continue the fluid drip (to protect her kidneys) but also begin the 24 hour Methotrexate chemo drip (ugh). We should be in the hospital until Friday. Please keep her in your prayers y’all. We want to make Wednesday our K Support day. If you have ordered a PRAY4K shirt, please try to wear it at some point on Wednesday, and we will be wearing ours. We will also be showing K pictures of people wearing ‘her’ shirt to hopefully raise her spirits :> I am praying against every single side effect of the chemo as well as praying for that appetite of hers to stay strong!

Thank you for keeping our family in your thoughts and prayers! We still have a long way to go in Kaylee’s cancer journey, but there is no doubt that the Lord is hearing your prayers! We will try to keep you posted on what is going on with K while we are at the hospital!

Big hugs to you and your families!

#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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