Duffy/Mom Blogging

Sorry for the delay~

This week has gone pretty well. We were so blessed to have my mom and stepdad drive in from Florida for a quick visit. A few days before their visit, my dad was here recovering from knee surgery, so K has had quite a bit of attention, which is always good. I took my dad back to his place on Sunday afternoon, and my mom and stepdad arrived Sunday night. My mom and Ron were determined to try everything to get K to eat more this week & gain weight. Kaylee has so much fun with them and is such a Grandpa’s girl! Their last night in town, they made sure Chris and I were able to get out for a very overdue date night, so that was a blessing as well! Mom and Ron headed home on Thursday morning, and K had a short chemo appt scheduled on Friday (Oct 18^th.)

We arrived early for a change, and K knows now as soon as her name is called, that means someone is going to prick her finger to draw blood, weigh her and check her height, bp and temp. She automatically starts to pout and then sticks out her bottom lip as soon as we sit down in the small vitals room. The crying begins as soon as K sees the nurse put on the blue gloves before they prick her finger. Great news though, Kaylee gained ½ a pound! Thank the Lord for that answered prayer! We were taken back to the chemo room to wait for her blood results. When K’s Oncologist came to meet with us, we learned that K’s platelet count was still relatively ok, but her hemoglobin count was very low. The Dr said that I would need to take K to get local labs (blood draw) done on Monday (tomorrow) because she would most likely need a blood transfusion at the latest; on Tuesday. K’s ANC count was also quite low, so we needed to be a bit more cautious about where we took her over the wknd, and be on the lookout for a probable fever (which would land us back in the hospital~ no thank you.) We found out that the only chemo K was scheduled for that day was Cytarabine (also known as Ara-C) which is the same injection we have had to give her. The Dr said “As soon as we get you the chemo injections for the week, you can head home and do the injection yourself tonight if you want, or wait and we can do it in a few minutes.” At the same time that Chris said “Yeah that would be good!” I was saying “No, no, no.” (I cannot stand giving her chemo injections, it breaks my heart, and I honestly would rather they just give her the injection and get it over with.) Chris won out that discussion and as soon as we got the things we needed for her chemo injections this week, we headed home.

Other than looking very ghost-like all weekend, K has been very happy and energetic!( <– also an answer to our nightly prayers) She had a blast at Chris’s cousin’s baby shower today, and she loved getting so much attention. She played and “talked” to her cousin Avrie most of the time today (Avrie is only 3 months younger than Kaylee, so it is always heartwarming & amusing to see those two together!) Much to our disappointment, K isn’t eating well at all again, and I continue to pray desperately for her appetite to increase. (For those that have asked, we have tried everything from every supplement drink that a kid under the age of 2 can drink, milkshakes (she won’t drink them), junk food, protein, fruits, desserts, veggies, carbs….you name it~ we have tried it.) I never thought I would be as excited as I was, when she ate 2 small pancakes I made for her this morning for breakfast! Apparently when going through chemo, all food tastes very metallic, and chemo takes away your hunger anyway, so imagine when you finally do get hungry and your food tastes like you are eating a battery! I wouldn’t want to eat either, poor thing! 😦

So, tomorrow I will be taking her to get blood drawn at a local lab and most likely will be taking her to the Children’s Hospital Clinic for a blood transfusion once we get her report back. We also have a short chemo day scheduled for Friday. Side-note, Kaylee turns 20 months old on Thursday! (Wow, so hard to believe she’ll be 20 months old already!)

So, our prayer requests this week are for: God’s complete healing of K’s cancer, K’s appetite to increase so she doesn’t lose any weight, for her to be calm tmwr during blood work, for her to be calm at the clinic for the blood transfusion on Tuesday and chemo on Friday. We are praying for the chemo not to affect her negatively in any way. We are praying that we can find a way to make these nightly chemo injections somewhat easier on all 3 of us. Of course we are still praying that Kaylee will continue being the energetic fighter that she already has shown us that she is. We are so thankful for sooooo many things that the Lord has shown us during this journey so far, and are blown away by how many people are touched by her story! We continue to fight this disease with our daughter, pray with and for our daughter and try to instill positivity and happiness into her daily life!

Thank you for keeping up with our story, sharing our story, praying for Kaylee, and helping her kick cancers butt!! GODS GOT THIS…we just need to pray!

#PRAY4K

Bible verse we have picked out for K’s Battle

Jeremiah 29:11~ “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.”

10/11/13
A few additions to the prayer list:

Today we found out that K has lost another pound in weight. 😨She simply isn’t hungry due to chemo. If she loses much more, the Dr will want to put in a feeding tube. PLEASE PRAY PRAY PRAY for an increased appetite in our daughter & that she won’t lose any more weight!!
Also, we have to do chemo injections every day this week. Ugh!!! Please pray for Chris, me and K that these wont be as hard as it was last time and that we can somehow get these done w/ minimal outbursts/tears.

Thanks so much y’all! Hope everyone has a fantastic weekend!
#pray4K
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Sent from Duffy’s iPhone

Duffy/Mom blogging

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First off, I wanted to answer a question I have gotten a lot lately ”How do I find the slideshow you posted about that your cousin put together? Answer~ Go to You Tube and type in Kaylee’s Story, and it should be the first one that pops up. It will not work from your phone b/c the song is copyrighted. Thank you to Jennifer Cannon who put that together when we returned from the hospital the last time. I still cry every time I watch it!

(After reading this- i should clarify, The first half was written 5 days ago & the Second half was written tonight so I apologize that the days sound confusing)

Ok! So, I realized it has been a while since our last blog, so I thought I needed to catch everyone up to speed on how life is lately. Last week (Sept 26^th) was a very long day for all of us. Kaylee was sedated for a lumbar puncture, had all day chemo and a blood transfusion. My child continues to amaze me as I was able to capture another video of her smiling & dancing WHILE getting a blood transfusion! :> I was waiting for a lecture on not giving K one of the chemo injections we were told to give her (I’m sorry, but ONE of the nights we were supposed to give her that was terrible and she was screaming and crying and after the past few nights of injections, I just couldn’t bear it.) I looked at my flailing& crying baby girl and said “No! Chris, blame me. I’m not…I can’t… do this to her tonight! We gave her the other injections, and that will have to do! She’s had enough!” My heart was breaking for her. So, yeah, I got the lecture from the Dr, and a new approach on how to give her the chemo injection that would require less stress on all of us. Luckily we don’t have to do any more injections for 1 week, so that helps, but I got the talk to suck it up and do it.

After driving home in Friday Atlanta traffic at 5:00 (if you don’t live in ATL, do not try this, it takes eons to get home!) I was so tired, I couldn’t even think about putting together dinner, so I almost cried when a close family friend who lives in my neighborhood surprised me by saying before she let our dogs outside at our house, she stopped by Publix and picked us up dinner. (God bless you Sherry!)Before we left the clinic on Friday we told the Dr about our plans for the wknd and asked if K could do it all (would it be ok?) She said “Just try not to let anyone but close family hold her, don’t let her around kids that could be sick from daycare or school and just use good hand washing techniques to keep her healthy…but as long as she seems ok, try it.” YAY!!!

Our plans, which included hitting up the huge yearly yard sale in our neighborhood Saturday morning with K’s Godparents, lunch with friends at our house after, and a visit at another friend’s UGA football gathering. It turned out to be a fantastic day (and so refreshing to see our friends we haven’t seen in a while!) We reallllllllly wanted to take K to the Riverfest Festival Sunday morning, but wanted to see how she was feeling first. She woke up a happy girl, so we spent an amazing Sunday family day with her at Riverfest before naptime was calling. She smiled the whole time on a kids train ride with daddy, looking at homemade scarecrows with mom, checking out the food trucks, live performances on the stage and then checking out the kid’s game area. Chris won her a princess crown at one of the carnival looking games, and she seemed to really enjoy people watching as we checked out all the arts & crafts booths before heading home. She took a great nap, stalked her daddy in the front yard while he worked on the yard and played with me outside until it was dinner time.

K still has some sort of alarm clock in her that seems to go off every night at 3am. She wakes up and cries. Rocking her just makes her more awake, and I can’t possibly let her try to just cry it out, b/c she goes thru so much every week, I just think it is mean…. so we have literally just resigned to letting her sleep with us (at least we go to bed just the two of us?)

The rest of the week went well, and Kaylee seemed to be feeling fantastic until Wednesday. Kaylee had (what I consider a fever, but her Dr disagrees) of 99.2. (At this temperature I am usually near tears and wishing for my own mom, so I definitely catered to her.) We went against what the clinic advised and gave her Tylenol before bed, which helped her sleep (until the now-normal 3am.)

We woke up on Thursday (October 3rd) at 6am (sedation procedure, and quick Chemo day) and left the house ready to get to the clinic a few minutes early so we were sure she would be first to get her lumbar puncture and chemo (they schedule a few kids at the same 8:00 appt time, so it is kind of whoever shows up first, goes first.) Since she cannot drink or eat until after her procedure, we definitely don’t want her to have to wait. Well that was the plan anyway… Chris and I were super grumpy, and after sitting in Atlanta traffic for 2 hours, because of an overturned tractor trailer on I75, we obviously were not early…but very late to the clinic. So we waited. Finally at 11AM K was sedated and did well during her lumbar puncture. We met with one of K’s Oncologist (the one who called K’s bone marrow stupid) (it’s in a post from when we were at the hospital) I really do like this Dr and trust his opinion, so when he gave us the copy of K’s blood counts and called her and the blood results EXCEPTIONAL, I was ecstatic. He said “Her ANC count (the white blood cells that fight off infection) look great at 650, I would think they would be much lower, but that is also why her 99 degree temp yesterday didn’t rise to over 100 degrees. The ANC cells helped her with that. You know, she is a very happy child, her other blood counts look good and her color makes me very pleased as well. She is doing quite well and the chemo seems to be working quite well.” She was given 2 chemo treatments, (for those that wanted to know what Chemo she had this week it was: Vincristine and Methotrexate) and even though taking the tape off and removing the port was pure torture to hear K scream so loud, I was just happy that it was a short day. We were home by 1:00.

All day Saturday Kaylee had a constant low grade fever and got very pale. She didn’t want to play, and it was clear to us she didn’t feel well at all. An old friend of mine came to visit us with her very cute dog, which seemed to really cheer K up for a few hours. Sunday she seemed about the same, so we canceled our family day plans, and just hung out and snuggled our little girl. This entire week has been a mixture of trying to get to feel better, and she started having cold symptoms. I was positive she was going to need a blood transfusion soon, (based on her color and lethargic personality) so I was eager to get her blood work results back. (FYI, the nurses at the Woodstock Wellstar Lab are amazing and I sincerely thank Denise for staying a few minutes late to ensure K wouldn’t have to wait in the waiting room, and helped me to try to calm K down during her blood draw!) I felt so bad for K afterwards, that when she excitedly yelled “Side, Mama!” (Her word for slide), I immediately made a quick stop at the neighborhood playground for her to go down a few slides and swing on the swings for a bit (anything to get a smile!) We got her surprising blood results back the next day (Wednesday). The nurse told me that her ANC count was still high, and was high to the point it showed K was fighting off a virus, which was probably the cold. The rest of her counts were still good enough not to need a transfusion, (wow) and chemo was still set for Friday morning (Oct 11^th.) October 11^th is a special day for us, because it is Chris and my wedding Anniversary. This year, we will spend our 5^th wedding Anniversary at the chemo clinic. My, how things have changed, but how blessed are we, that we don’t have to spend it at the hospital!

Today, we were so happy to have my best friend Jenny and her daughter Taylor visit us for a home play date. K has had weekly play dates with “Tay-tor” since she born, so she lit up as soon as she saw her! Although K clearly didn’t feel well, the visit seemed to really cheer her up, and that was a blessing!

So, tomorrow is chemo day. She will get 3 pretty potent types of chemo (Cyclophosphamide, Cytarabine and Mercaptopurine) Luckily, K does not have to be sedated (she can eat and drink at her leisure! Thank you Lord!) She does have all day chemo that starts at 10am. I am praying my heart out that the chemo will not affect her! (side note; Kaylee has learned to say the word “Amen” after I pray with her before bed every night, which is quite possibly the most heart-melting thing ever.) Ok, before I let my attention go all over the place~ here are our prayers for the week: We are profusely thanking God in advance for completely healing Kaylee, thanking Him for stalling her complete hair loss, and thanking Him for our good days and our bad days (which make us really treasure the better days.) We are praying for K to be calm as she can be during her port access tmwr (well through all of tomorrow, really.)We are praying for a better weekend, and week ahead. Above all else, we are thanking God for giving us the honor and privilege to be Kaylee’s parents! I look back at the slideshow of our life since August 1^st and can’t wrap my brain around how she has been so amazing through all that has happened to her! I know I say it quite a bit, but WHAT a trooper she is! I tell her what a strong fighter she is every day, and thank God for that. All the prayers that y’all have been saying for her, and our family have most definitely been heard, and we are so thankful! Please continue those prayers for K. The Dr’s have said it will be a miracle if we can make it through October without having to go to the hospital, which makes me want K to be that miracle! We CAN do ALL things through Christ who strengthen us!! Let us not forget that!

#PRAY4K!

Jeremiah 29:11~ “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.”

Just a heads up-
We are waiting on another order for the PRAY4K shirts to arrive! We are overwhelmed with thankfulness for the big &small orders we have received lately. As soon as we receive the new batch this week, we will get those out to you!
Thank you all for the support! 🙂
Duffy, Chris & K

Saturday September 21^st

Duffy blogging

Chris and I woke up to our alarms at 6:15am on Friday, and were out the door with lunches packed and everyone dressed and ready to go at 6:45. Kaylee only had until 7am to drink water since she was supposedly getting sedated at 8am. She thankfully drank some water on the way to the cancer clinic until 7:00. The bonus to getting up so early is that it was dark outside when we left the house, so on our way, we were able to see the sun rise. (I am trying to find something positive to talk about before I tell you about our day!)

We arrived to the clinic right on time, and usually we are called right in to get all the pre-procedure things done, but this time we waited for 30 minutes until Chris asked how long it might be. The nurse was under the assumption that we were already called to the pre procedure room, so she made sure we were next up. Kaylee was restless and asking for water, so we were eager to get things going. Once we she had her finger pricked, blood taken, weight, and height checked (and we calmed her down from crying), we were taken to the sedation room to wait on her blood count results, access her port & sign paperwork.

This usually takes no longer than 20 minutes, so after an hour of waiting (and Kaylee crying asking for food and water) I went to ask someone what was going on.  She said they would be with us as soon as possible. After waiting an hour ½ (Kaylee had now been up 4 hours without any food and 3 hours without anything to drink…. to say that she was irritable is an understatement (poor thing!) Chris and I were clearly not pleased as well. They apologized for all the waiting, they let us hold her until she was sedated, and we kissed her cheek before we left to go wait in the waiting area.

The lumbar puncture and injecting chemo in her spine isn’t a long procedure, but we were still surprised to see the Dr 10 minutes after we left the room. She said “So we are done, but Kaylee’s sedation medicine wore off earlier than we expected and she woke up as we were finishing. You can go see her. She is awake.” (This was shocking b/c the anesthesiologist usually makes sure she is sedated long enough for 15 min after the procedure is done, b/c when they inject chemo in the spine, the patient has to lie still for 15 minutes. In my mind ~ Kaylee is awake?  This can’t be good, she doesn’t lie still…ever… Wait…better question…she woke up WHILE they were finishing her procedure? What?! What does that even mean?! )  We rushed to her room and were not expecting what we saw. I heard her crying before I even entered the room. She was frantically looking around, would not make eye contact with us, she was thrashing, crying and screaming “Cracker!”  I immediately became nervous and said “Can I please just give her a cracker?” (She was still lying flat but she was trying to sit up, so the Dr asked me to hold her still. (Seriously?)  She was frantically reaching for something in the air and yelling “Crackerrrrr!!!” with tears running down her face. I desperately tried to give her juice but she just squeezed the juice box, getting it on her neck and cried even more frantically. I finally got a goldfish cracker from Chris and gave it to her.  The nurse said “Maybe if we leave the room, she will calm down, y’all take a minute with her.” The Dr and the nurse left the room. I was trying to calm K down and then out of nowhere she was still making the crying face but no sound was coming out, (and this is the really scary part) I’m standing over Kaylee, looking at my baby girl who is still not making eye contact with me, Crying with no sound, and her eyes roll up in her head, she STOPS BREATHING AND STARTS TO TURN BLUE!!

Me: “OH my God! Oh my God! SHE IS TURNING BLUE! She isn’t breathing!! GET HELP! CHRIS!!!”  Chris: (screaming) Someone Help! She isn’t Breathing!! DR!” Me: (at the same time as Chris) Dr! Help us!! She is turning Blue!!!”

The Dr and the nurse rushed in and immediately backed me and Chris away, finger sweep the goldfish cracker (that was in her cheek by the way, not her throat) and put an oxygen mask on K. Within a few seconds (which felt like minutes) K’s eyes flew open, she gasped for air, batting away the oxygen mask and screaming!

She was still crying and yelling “Cracker!! Cracker!!!” (She was so hungry!) I looked at the nurse who (after a min) allowed us back to K’s bed and I said “What can we do?” She said “Kaylee has to drink something before she can eat. We don’t know if a particle of the cracker is lodged in her airway, so she has to drink first.” I tried to keep giving K her sippy cup and she kept shoving it away only getting angrier. (They had her sitting up at this point)

K then starting trying to rip her port line out of her chest while screaming! The Dr asked me to pick her up and put her in my lap. K seemed to recognize me at this point, but there was no consoling her. She kept grabbing to rip out her port in her chest, and crying. The nurse asked me to give her a bear hug so she couldn’t rip it out.  A few minutes went by of the nurse (and us) watching and trying to console K. I pleaded with the nurse to please let me give her food since that is all she was crying and screaming for. Since K was just getting more upset she said “ok, try one cracker.” I gave K a cracker, and she immediately gobbled it down and then reached for her sippy cup and gulped down water. She then ate the rest of the mini bag of goldfish and continued to drink water. (Keep in mind, she was still crying in between bites.)

The nurse still needed to give K a different dose of chemo through her port line. (Bad timing.) K freaked out kicking and screaming. The nurse actually worried that K had partially pulled the port out, and had to check it out before giving her the dose of chemo. Thankfully, the port line was still intact, but I had to hold her hands away because she kept swatting at the port line making it really hard for the nurse to inject the chemo.

I said “Something is obviously wrong!!  I’ve been with her every day since she was born, and with her after every sedation and she has never acted this way! Something is wrong!”  She hasn’t stopped crying, she hasn’t calmed down, Can’t you do something for her?” All I was told in return was “sometimes kids act differently after each sedation, and sometimes this happens.” I said “But she stopped breathing!” The nurse said “this is not uncommon with a child under the age of 2. They can get so upset, and hold their breath or they don’t get enough air, causing them to pass out. “ (This still makes absolutely no sense, b/c she didn’t “pass out” she stopped breathing and turned blue!)

FINALLY, after a while K was calming down a bit in my lap, watching Elmo on the IPad .My mind was starting to catch up with had just happened in the last hour, and I could not hold back the silent tears just as the Dr walked in to check on Kaylee. The Dr said “Its ok, it’s ok to cry… I know. You both got scared. She’s ok; she is going to be ok. You know that, right?” I nodded and k looked at me and said “Mama?” saw me crying and started to cry again, so I immediately pulled it together while Chris handed me a tissue & tried to distract Kaylee. The Dr said “We are sending y’all upstairs to the lab, so Kaylee can get an x-ray of her chest to make sure there is no fluid in her lungs. You can head home after that.” She isn’t doing all day chemo today. That will be next Friday. You will need to keep giving her the chemo injections this week, as well as the liquid chemo by mouth.” Also, don’t forget we had to give her a flu shot while she was sedated like we discussed, so she will probably have flu-like symptoms and feel pretty crummy this weekend.  :<

We headed upstairs to meet the X-ray technician, and soon as we got in the big x-ray room, K lost it again. Obviously Chris and I had to put on a lead vest (which freaked Kaylee out even more.) We had to lay her down on a hard white table, put a baby version of the lead vest on her lower abdomen ,and(this part kills me too) Chris had to hold her legs down, and I had to pin down her arms straight up by her ears. Kaylee was crying and screaming “ALL DONE??? ALL DONEEEEE?”  and doing everything possible to get loose and my heart was breaking into a thousand pieces each time the X-ray technician said “She didn’t hold still long enough, we have to try again!” (AHHHHHH!!!!!)  By the time we finally got the ok, Chris scooped her up in his arms, and we couldn’t get out of the clinic fast enough! Our nerves were shot, we were drained, and poor Kaylee finally calmed down by the time we got to our car. I sat in the backseat with her, and fed her some of her sandwich I had made that morning until she fell asleep, while Chris drove us home.

Once we got home she was still asleep, so Chris quietly got her out of her car seat & carried her upstairs to her room and laid her in my lap to rock her back to sleep.

Silver lining of the day: When K woke up from her nap, I gave her the rest of her lunch (which she ate) and she went to her playroom to play with her toys! I was watching her in shock that she was acting like the horrible morning had never happened. She was coloring, playing with her music toys and pushing her baby stroller around the house! Chris came home from work and I said “come check this out!”  She did really well for the remainder of the day, and although she didn’t eat much for dinner, she had fun during bath time, loved story time and (praise God) slept all night long!! J We actually got a bit of sleep!

Things to pray for this week: That we will find some way to make these chemo injections easier. It is hard for us to do and causes Kaylee a ton of anxiety and stress. Please pray that the side effects from the chemo we have to give her is minimal; that she will continue to eat & sleep better (not sleeping well already tonight.) We are praying that what we went through on Friday NEVER happens again. Once in a lifetime is frightening enough! Kaylee also has to get another complete blood workup on Wednesday, so please pray that she is calm for that. We are praying for complete healing & that this coming Friday will be much easier on her. We will find out on Friday if she will need any transfusions (blood or platelets), so we are praying that her blood counts will be stable enough not to need those. Thank you all for your constant prayers for Kaylee and our family! We are so very thankful the PRAY4K shirts are still selling which help us with the cost of K’s care. Thank you for reading the blog and keeping up with updates on our daughter!  She needs every prayer she can get, so please continue sharing her story!

Praying everyone has a great week!

PRAY4K!

Jeremiah 29:11~ “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.”

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