October 16, 2019– Day +27

We are being discharged from the PICU tomorrow!

They started the conversation with us last night and I couldn’t believe it. Bo is making some big strides lately. It’s hard for us to see how much his body is healing internally because we don’t understand all the tests they run daily, but we are being assured he’s doing good. He still seems so fragile to me. He’s nowhere close to the boy we came to the hospital with, but he has weathered a major storm and recovery is going to take time.

I never thought I’d say this, but I am sad to leave our amazing PICU team. Being in the PICU has been one of the most stressful experiences of my life, but the care we have received has made it bearable. The staff in the PICU are deeply passionate about what they do, so incredibly smart, and genuinely love kids and their families. Our boy was so very sick when he came to them and they have walked this long, hard road with us. They are so happy to see the progress he has made and are joyfully graduating us back to our oncology unit. We can’t wait to come back down to say hello once Bo is back to his crazy, energetic self!

Bo is doing very well on intermittent dialysis (also called HD or hemodialysis). Right now they have him on an every 24 hours schedule, and they run him on the machine for 3 hours. A major victory is that Bo has had 2 wet diapers today! This is exactly what the kidney team wants to see and it means that his kidneys are starting to recover. As he continues to improve and have more wet diapers, they’ll change his dialysis schedule to every other day, then a few times a week, and then NO MORE! We aren’t sure how long that process might take, but we are hopeful to see steady improvement over the next several weeks.

We heard that the CMV fighter cells should be here by Friday or Monday. I am so ready for this CMV to be taken care of for good! Please be praying for the cells to work quickly and for Bo’s marrow to recover from the medicine he’s been on to fight the CMV.

I am having trouble finding the words to express the gratitude I feel for the progress we have seen in Bo this week. These last several weeks have felt like some of the darkest and lowest of my life. There have been moments where I physically felt like I was being pressed from every side and I wasn’t sure how much more I could take. Watching our boy suffer and waiting to see how God was going to provide has been a surreal experience. I was telling a friend today that I have read Psalm 23 so many times in my life, but it has never been so real to me as it has this week. God has proven to be every bit as good as He says He is. He is a good, good Shepherd. He has cared for Bo so tenderly, has brought him (and us) through some of the hardest, darkest valleys, and continues to sustain him day by day. I am in awe witnessing firsthand His provision and care. A good friend encouraged me to find ‘stones of remembrance’ (Joshua 4) throughout this journey, and I can testify that this is one. God has been so very faithful to us. May we never forget his power, compassion, and care.

I want to thank all of you for your prayers that have carried us these last 2.5 weeks in the PICU. Your love for our boy has brought so much comfort. The texts, calls, emails, and comments all came at moments when we needed encouragement to keep pressing in and pressing on. Some of you showed up to the hospital without being asked and sat with us, prayed with us, brought food, and held our boy so we could sleep, shower, and eat. Your physical presence has meant so much and we are grateful. Those of you far away have carried us with your prayers and constant reminders that we are remembered. Reconnecting with so many of you has been one of the greatest blessings. We have made so many new friends on this journey as well. Our church family has come around us in ways that have astounded us. Some of you we have never even met have brought meals and sent care packages. We have been so blessed to be a part of the family of God and to receive the care that comes from it. I know for many (myself included) accepting help or asking for it is hard. This journey has forced us to acknowledge our limitations and weaknesses and God has provided everything we have needed through His people. Thank you for faithfully walking with us in all the ways you are able. Near or far, we feel your love. We are excited to share in celebrating God’s victories with you!

Reading stories before bed last night
This is Bo’s new hemodialysis machine! A special dialysis nurse bring these 2 big machines to our room every morning and runs Bo on the machine for 3 hours. It’s a 5 hour operation between set up, priming, the actual dialysis running, and then tear down and cleaning.
Bo worked on a lot of strength building during PT today. Using his legs, picking up toys, and sitting up. He did SO GOOD!
Exhausted after PT, but wanted to keep holding his toys
They changed the dressing around Bo’s central lines today and there was no more bleeding! I am so grateful that it hasn’t been an issue since last Thursday.
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11 thoughts on “October 16, 2019– Day +27

  1. Oh Sweet Chloe! This is your nutty old Sunday school teacher that threatened to rip a boys arm off and eat him with it if he didn’t behave to your HORROR! ?
    We have been praying daily for Bo and are sooooo excited to hear how he’s recovering.
    You mentioned Psalms 23 and I heard this once and never forgot.
    “Even though I walk through the valley of the shadow of death…. thou art with me”.
    There MUST be light behind to cast a shadow!
    He’s in every valley with us. His light and everlasting Arms carry us through. I know exactly how you feel as our son survived cancer at age 4. I learned about valleys first hand, know we never will stop praying for a complete healing and no damage! Love you

  2. I see Bo climbing up the side of a dirt pit! While the sand may fall out from under his feet, God is right there reaching for him to lift him to solid ground! He is such a strong little boy. Look what he has been through to date!!! He is doing his part to get well, his medical team is doing theirs and our God is doing the rest! It’s such a winning combination! I pray upstairs will be as great as the PICU has been.
    Sending love, joy and continued prayers! Julie

  3. Following daily the troughs and peaks and felt pain and hope alongside y’all with your updates. I feel strength and goodness building steadily. So glad to hear Bo has graduated out of the PICU! Such great news!

    1. Thank you for these regular updates! Praise the Lord for His faithfulness in sustaining you and your family through these deep deep valleys! As part of your mom’s HI family, we pray for Bo daily and feel so encouraged as we read this latest ‘miracle’ on Bo’s journey on his road to recovery! Please know that many prayers are lifting you all to His throne daily.

  4. OMG Dear Lord….Chloe, Lance, Naomi, and family….
    I am ecstatic to read this update of Brave Bo!
    No matter what is going on in my own life, I am so thankful, and in awe as to what God has done, and continues to do with Bo’s progress…..It has made my day!

    Praising God for His grace and mercy…

  5. “Thank you Heavenly Father for taking care of this wonderful family! We are amazed and bring you all the glory! How heart warming it is to see little Bo responding so favourably to the treatments and for the medical team for their wisdom, insight and compassionate, tender hearts. Lord, we pray you will bring Godly order in Bo’s body and for complete healing. We lift up Lance and Chloe to you – renew their spirits and strengthen their bodies as they pour into their little boy’s life! May they be so aware of your presence in that room. May they rest in you as they walk in faith knowing you are there!” In Jesus Name, Amen!

  6. Dear Chloe and Lance, thank you for sharing your heart & soul on your difficult journey, You are shining the light of Jesus everyday. Exciting news today for your precious Bo!! Reading about each step in this process & all the miracles brings joy & hope. Hugs to you both and Naomi & Bo?love & prayers every day, “Aunty” Janet??????

  7. We are rejoicing with you, dear Chloe, with the news of Bo’s continuing healing!! We have a good, good Heavenly Father who is showing you His faithfulness and love!!! Val and I are praying daily for all of you and we so wish we could give you a big bear hug!!
    You have likely heard it before but if you need a song to listen to check out Kip Fox’ “Let Me Count The Ways”. So true for you as you walk this journey!
    Love you Chloe!!!

  8. Chloe, we have not met but we know your mum Julie through the Haggai ministry and she is very dear to us. God brought Bo to mind this morning and the scripture 1 Thess 5:16-18. Rejoice always, pray continually, for this is Gods will for you IN Christ Jesus.
    Because you are IN Christ… He is present in your circumstances and will give you strength for the journey.

  9. Dear Lord Jesus
    Thank you for hearing our prayers and responding by supporting Bo and his medical team with the guidance and leading to achieve such tremendous results. Thank you oh Lord for the strength that you have given his Family to keep such strong Faith in your ability to control this outcome and we ask that you continue to do both and to provide a complete cure to your Son Bo so that he can grow in your Love and witness to others of your compassionate and healing Spirit. We humbly ask that this be your direction for Bo’s life and eternally thank you oh Lord.
    In the name of our Father,
    PS Bo your color looks so good and I know that it’s from the kiss of the Angels that our Lord has watching over you – Thanks you Lord Jesus!

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