Category: Updates

It’s hard to believe we have already been in the PICU for 2 nights. Thankfully, our time here so far has been quiet and peaceful. As hard as it is to need to be in the PICU, we have felt so much relief. Bo is in his bed resting 24/7 and has eyes on him […]

I don’t even know where to begin, but I’ll say this– the peace of God is so palpable in our room. If I’m honest, yesterday was a blur. I didn’t feel much peace at all. I felt confusion and I was so scared and broken. But this morning, we awoke and peace is HERE. So […]

We have been blown away by the prayers and support we have received today. Were in not for all of you and the grace of God poured out on us, we would have crumbled. Thank you doesn’t seem sufficient. Bo’s line placement surgery went well. We finally got into our room in the PICU around […]

We just learned that Bo’s liver is completely blocked, which is what is causing his fluid build up. The good news is that this is what they thought might be happening, there are things that they can do, and they caught it now and are going to intervene at the earliest possible time. The cause […]

We need big, bold prayers for Bo today. We need to see his body begin to process the fluid accumulation in his body immediately. The fluid remaining in his body is serious for his breathing and other organs like his liver and kidneys. Doctors need to see some results this morning in urine output to […]

We finally made it to Day +10. It feels good to be in the double digits. Bo barely gained any fluid over the last 24 hours which is good news. He didn’t lose any, but he didn’t gain more. Small victory! We saw in his daily labs that there is something starting to happen in […]

Brief update and prayer request: Unfortunately, Bo has continued to gain fluid, most of it gathering in his tummy. From yesterday to today he has gained one pound. They gave him a medicine to help get the fluid off, but he has continued to not respond as hoped. Our understanding is that there is fluid […]

Friends, We need your continued prayers. Things are getting harder, and it has been excruciating. Although what Bo is going through is to be expected, the reality of it all is almost too much to bear at times. Bo has started retaining fluid all over his body. It is most apparent in his abdomen, as […]

Bo has definitely been experiencing more nausea, vomiting, pain, and discomfort over the last 48 hours. It is hard for us as parents since he can’t tell us exactly what he is feeling, but we know our boy and can tell he is not himself. We have stepped up the frequency and intensity of his […]

Today is the day I’ve been dreading. The effects of the chemo are in full swing and our sweet boy is feeling pretty terrible. He has been vomiting and it is apparent that his throat is hurting as are his tongue and mouth. The good news is that this is all expected and we can […]