August 10th (Day 9 of living in the hospital)

Duffy’s Blog

Grammatical errors all over the place~ work with me here.

Where to begin? There are so many things to be thankful for as well as things we need to be praying about! I guess I will not worry about yesterday and tell everyone about today. AUGUST 10th: Day 8 of living in the hospital.

This morning we were thankful to wake up to Hot and fresh Krispy Kreme donuts and Starbucks coffee from Chris’s dad who flew in town this wknd to see K & family. I tried to tell Kaylee (when she refused a bite of my donut) what she was missing out on but she wanted nothing to do with it (is this my child?) I started to worry a bit when she refused anything we offered her for breakfast, even milk which she has every morning with me. The Oncologists came to meet with us about her current blood results (Kaylee gets her blood taken every morning at 4am.) Everything was so low (which is what we want the chemo to be doing but the levels were SO low that she was lethargic, pale and NOT happy.) The Dr’s suggested that we go ahead with a blood transfusion 2 days early to which Chris and I both replied “Yes, please! Can we do it now?!” (we know from last week’s experience that she does SOOO much better with new blood~ it just makes her feel better, and that is all we want….her to feel better!) We told the oncologists about her weight this morning (she lost even more weight) and the fact that she keeps refusing food. This seemed to surprise them, b/c pthe steroids that she is on is supposed to make her a monster eater and gain 10lbs in a week (part of the chemo plan.) They stood firm on “She’ll be fine, the steroids will kick in soon.” Ugh.

We were told that K could have a 2 hour break from all the drips/cords until they found her perfect match of blood, (YAY!) so we were able to take her for a walk (which usually cheers her up.) So, we took her to the outside Koi pond and after saying “FISHY!” with excitement, she cried. :< We took her to the Aquarium looking wall (a Video wall that has clips of aquatic life and it almost makes you think you are at an Aquarium for a second) ~ She again was excited for a second, then kind of moaned, cuddled into me, whined a bit and looked super sleepy, so we took her back to the room. She catnapped until my mom and Stepdad showed up (bless my mom & Ron who are housesitting for us~ She does our daily laundry, gets our mail, and is taking care of our dogs while we are in the hospital (as well as visiting us every day, which I love.)

K fell back asleep on me and that’s when I told my mom & stepdad about her blood levels and I just let the worry of her not eating, her losing weight constantly, and the tiredness get the best of me and cried. When you are a mom and you have to sit back and watch your daughter go thru pain, it breaks your heart. It is a constant battle of “Why her and not me? I could do this….but she is …so little and fragile..” But then I regroup, get focused & and give all my worries and concern to God and Trust that He will heal her. It is just hard.

Our nurse came in and said the blood was ready and would take 3 hours for it to fully be in her system so we knew we had to stay in the room (which worked out b/c we had visitors throughout the day). There were moments of playfulness when Kaylee received a new toy from friends that visited, then she would fall back asleep (when your blood levels are super low, you will be very tired!) As soon as her blood was done, Chris’s family came in with an amazing dinner for all the staff and us to enjoy (at this point K had eaten 2 cheese sticks and ½ a yogurt ALL day, and now refused dinner.) Chris’s Uncle Kevin walked in and immediately put a smile on K’s face and got her to laugh (which was like heaven to my ears at this point!) When all family packed up and headed home around 7 ish, my little girl let it all out with mommy! Chris had walked his dad out downstairs and I was by myself trying to learn how to tape up K’s port in order to bathe her, get her bath ready, get her clothes off, pjs out with her crying & clinging to my neck. (Sigh) The best I can say about this evening was that she finally said yes at our last ditch effort of food after her bath (easy mac & chz!) She settled down with a full tummy and 3 short bedtime stories w/ mommy & I breathed a sigh of relief as I saw her little eyelids flutter closed b/c I know she needs her sleep to fight her battle.

So I sit her with a smuggled in glass of wine from a friend, drinking out of a Styrofoam cup (classy, I know loll) and rehashing the day with Chris. He has no idea that he took me from being kind of sad to another way of thinking. He talked about another mom that came to chat with us today. She has a 16 month old with a brain tumor & on his 3rd round of chemo…… and I sit here and complain about a trial of a day with just some moaning and crying from my child? Shame on me! I quickly realize I need to rise up and THANK GOD that our situation isn’t worse! Thank God, that she has the BEST type of Leukemia… The one with an 85% cure rate! Thank God that we only have to live in the hospital for 4 weeks instead of 5, 6, or even 10 like a family I met today! I need to THANK GOD that my child still has smiles to give us, new words to share with us (she has learned 5 new words in this last week!) and Hugs to give out to people she trusts! I need to THANK GOD for all the people reading this, praying for us, and praying for her! I need to THANK GOD for knowing the outcome of this fight already and allowing us to lean on HIM when we feel like breaking! Most of all, I need to THANK GOD for giving me the opportunity to be Kaylee’s mom, for knowing that I am strong enough to handle this, and to come out of this trial we have been given THANKING GOD!!

Hug your children extra tight tonight for us and just….be thankful! There is no such thing as loving your kids too much! To our prayer warriors who read this~ THANK YOU!!!

Philippians 4:6~ Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.


15 thoughts on “August 10th (Day 9 of living in the hospital)

  1. Duffy,
    Your sweet Kaylee has been on my mind and in my heart. I have been praying for her and for you and Chris. As a mom, I can’t imagine going through this. I’m so glad you have such a strong support system. I’ll continue to pray!

  2. Duffy, you are doing an amazing job and being an amazing mother! I cry and smile through all your posts. Thank you for keeping us updated and letting us know the best ways to pray for you, Chris, and Kaylee. Praying daily for you all!!

  3. Duffy, Chris and sweet strong little Kaylee,
    Your words inspire me! Every time I read a post I feel the spirit. I can feel that God is with you all. Duffy you just wrote that God doesn’t give you anything you can’t handle and it reminded me of what my mother always said to me, and when she got sick all the way to her last days. You are an INCREDIBLE mother and God is using you to spread his word, look at all the lives your little fighter has touched. She is like a firecracker, small on the outside but inside she is going to go BOOM I’m gonna kick cancers butt!!
    Trust in the lord with all your heart, lean not into your own understanding, FOR GOD IS WITH YOU!!!!!!!!!!!!

  4. Thank you for sharing Kalee’s and your families updates with us. I can’t even begin to imagine what your family is going through. I applaud your strength in God and in prayer. Please give Kaylee a kiss from New Jersey. We pray daily for her and she is never far from our thoughts.

  5. Oh Duffy, you are one amazing momma!!! We thank you for letting us be apart of this journey with you. Just remember to allow yourself to have these bad days when you break down, it is only normal and any of us would do the same. You are so brave and such great parents to Kaylee…. continued prayers for you and sweet baby girl!

  6. God is good, and it is so amazing how he is working through you and giving you strength. We are praying for you guys every day!!

  7. Duffy & Chris, y’all are doing such an amazing job & it is perfectly fine & normal to have little breakdowns of emotions. Y’all need to have those moments together & don’t try to hold it back. I pray that the steroids kick in today & Kaylee will have a strong appetite & have more energy. How wonderful that the hospital has all those fun places for the kids to visit. God bless those pediatric nurses too. I was an oncology nurse for years but never worked with children. Takes very special people & that’s what y’all are. Love y’all & hope today will be a great day!

  8. She is in our thoughts and prayers and so are all of you. My mom-in-law Vicky Alfe is having a hard trying to post on here due to her comp acting up, but she wants you to know that Kaylee and you all are in her thoughts and prayers. She keeps up with the blogs as well.

  9. Duffy, you would not be human if you did not have a bad day once in a while. Continued prayers for Kaylee & all of the family there.

  10. Duffy, you and your family will be in our prayers constantly. Praying for peace and strength to fill your whole being so that you can be all that you need to be for Kaylee.

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