The hard part about getting good news is that I don’t want it to determine my mood. I don’t want to need good news to have good days.
Really I think this is just my heart building up a wall for the bad news days. I want to be able to make good days, find the good in every day and hold on to it.
But we’ve gotten some good news lately and there’s nothing wrong with celebrating it. Here’s the rundown.
Brain
Des went in for another sample of cerebrospinal fluid yesterday. This procedure is normal for kids on Day 8 of treatment. It’s normally to check the fluid again for evidence of cancer and also administer a small amount of chemo.
In Des’s case, they were also checking the pressure of the fluid since it was elevated last week.
Results: There was not enough pressure to even get the sample. We went from abnormally high pressure to unusually low. Medication worked. Prayers were answered. The doctors are happy. The ophthalmology exam even showed significant improvement.
This is a huge win for one week of treatment. They’ll monitor the low pressure but are not nearly as concerned as high pressure.
Fluids
Des is eating and drinking well and as of about an hour ago he was taken off of IV fluids. After being hooked up for 11 days this is another huge win.
Home
Finally, we got the news that we’re on track to be discharged tomorrow! We know that treating this from home will be a huge adjustment but we expect the healing to improve in a familiar environment.
There will be things we miss about the hospital, mostly the 24-hour access to endless chocolate milk and snacks. I can probably recreate that part at home, though.
We will also miss being surrounded by a team of supportive and forever patient doctors, nurses, and staff. They have been beyond phenomenal in their areas of expertise and genuinely caring for Des and us.
But we’re ready. He’s ready. The next phase is to bring this guy home.
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So glad to hear you can go home soon, and that treatment is already showing great results. We will be “running” with you however we can going forward. Love you guys!
Thank you for the update. Praying for the entire family.
Thank you for giving access to these updates. So glad you get to come home.
Love to hear all about Des and your family journey! Jerry and I are retired and available when you need a delivery/drop off, to the house or anything. 🙏🏻
Matt, a couple years ago I stumbled across a quote that is forever stuck in my mind – Grief and gratitude can sit at the same table. Its okay to be brokenhearted and rejoice at the same time. Cancer kind of requires that of us. I think its so overwhelmingly sad that you have to look for good moments in order to breathe. You can feel all the feelings and know that you are in a safe place to feel them, because you are sheltered by Jesus.
I am so thankful for good news this week. God is in the details just as much as He is in the big stuff.
You all are loved, very much.
It is truly amazing how faithful God is during the darkest times. How great in your opening statement about making good days. Will continue to pray for Desmond and your whole family.
What a WHIRLWIND of a past two weeks for u all! Our hearts continue to overwhelm with thankful praise for the ways in which the Lord has already moved, and also prayers upon prayers for these more miles to go.
I very much echo with Kim above: grief and gratitude CAN sit at the same table. And there will continue to be loving and concerned church family to serve, encourage, and comfort on Des’s journey to healing and health. We love u all!
MATEO 8:8
MATEO 8:8
Love and prayers ❤️
Loved reading this update. Thank you for sharing.
Des and your family are getting to “show off” God’s Grace.
“My Grace is sufficient for you, for my power is made perfect in weakness. 2 Corinthians 12:9
Thanks for reminding all of us how Christians walk through crisis.
Love y’all!
I am so glad you are keeping the church family updated as WE are standing and praying for you guys. We serve a mighty God who does mighty things with a blink of his eyes. I was having a conversation with Jina Wells and we couldn’t imagine what it would feel or be like if being a Christian were not in play. Please know you have a huge church family who are right beside the family, through bad days/good days and just to be a good listener when needed. We love you Matt, Sara, Luke, Solomon and Desmond!!!💜🙏💜🙏💜🙏
Continued prayers for all.
Love and hugs for you all. If there is anything I can do please do not hesitate to let me know. You will be in my prayers and thoughts. I can’t imagine having to go through this with your baby. Your strength is amazing. Thank you for sharing the journey with us.
Such a blessing Desmond is getting better. There have been lots of prayers for all of you. God is taking care of Desmond. All of you will continue to be in my prayers and thoughts.
Dave and I are so thankful for the improvements in Desmond. God has answered prayers of many. We will help any way we can, so please don’t hesitate to ask . Love and hugs to you both and your sweet adorable sons!!
❤️🙏❤️🙏
My heart just dropped when the first news came out but God is good through our trials and HE IS always with us. Grateful for the good news!!
You will find the balance of celebrating the good news while declaring that your joy is not contingent upon it.
I feel the pain you as parents and family must be going facing, however, your faith is strong and you have so many prayers going on and the prognosis is favorable. I can’t help but think of anyone going through something like this without God, yet there are many. We know nothing is impossible with God and that’s what we will hold on to.
Hello Peyton’s!
Wanted you to know I’m thinking about all of you tonight. I hope Des is feeling better and possibly off steroids. Those steroids can do a number on little guys.
I’ve had a mom of a survivor offer to talk with you anytime. Her son’s journey is quite a story. Let me know if you’re interested in contacting her.
Lastly, my devotional today was Proverbs 3:5-6. “Trust the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will make your path straight.”
Love y’all!
Thanks Shelia. He is on steroids for two more weeks, then we gauge the next phase from there. He’s doing better every day with energy and ability to doing things on his own. The moodyness can go, but that’s only apparent when he’s very tired or hungry. Really, it feels like this could be normal except for taking longer to do things and adding in meds and cleaning. And we’ve always benefited from slowing down in our family.
That Proverb rings true for sure. I have no understanding of this, but the path has been paved so smooth for us. We can’t help but recognize God’s love and care for us.
That was from me (Sara) 😁