August 10, 2020–Day +326, BIG NEWS!

Hi Friends!

We have big news! We had clinic this morning and Bo’s counts are looking fantastic, his platelets are up to 93 (from 70 last month), and his central line is scheduled to be removed this Thursday morning!

On top of all of that, Bo’s doctor let us know that because of his most recent clear bone marrow biopsy that was done in June, we won’t need to do one next month on his one year transplant anniversary. They will still do a chimerism test to make sure Bo is still 100% donor, but Bo shouldn’t need a biopsy EVER again! PRAISE GOD!

Bo’s doctor also let us know that if his counts look good again next month, she feels good about sending us back to our original hospital and care team for the rest of Bo’s future follow ups (for the next 5 years). We will still have an annual appointment at our transplant hospital with his doctor where they will do a chimerism test, but that’s it! So hard believe we’re finally at this point in the journey.

Passing these major milestones bring up so many feelings. It’s really confusing processing it all–there’s excitement, gratitude, anxiety, and grief. This journey has been so incredibly hard and to be moving ahead (albeit slowly) in a good direction feels oddly sad. Grief is strange like that. This journey has brought immense pain, but also immense joy. As we approach Bo’s central line being removed, I realized how sad I was about it. I won’t miss it, but that line has been a life line for Bo for 15 months. It has delivered chemotherapy which killed cancerous cells, but more importantly it delivered his donor’s life saving marrow. It delivered his platelets, blood transfusions, fluids, nourishment, and medicines. Without that line, Bo wouldn’t have been able to receive the treatments his body desperately needed. God accomplished his healing work through this line and when I take the time to view it as a tool in God’s hands, it feels even more significant. Central lines come with risks and can cause chronic issues–blood borne infections are some of the scariest complications that can happen. And praise God–Bo has been kept safe from line complications . His line has never been anything but a life line and for that I am so thankful. Just taking the time to grieve and appreciate it for all that it was.

As I work through the grief of saying goodbye to something that has played such an important role in Bo’s treatment, I’m immensely grateful for the competency Lance and I have gained in caring for Bo and his central line, which is all grace. We recognize that God has given us the ability to acquire new skills that at first seemed so daunting and scary! We stepped into this journey knowing nothing about anything and are now 16 months down the road and we feel confident in how to care for Bo. In honor of his line coming out, we took some photos yesterday to document Bo’s last EVER dressing change. This is something we have done once a week for the last 15 months. Thanks to our amazing IV therapy nurses who trained us for weeks and weeks until we were confident, this weekly dressing change is a breeze. Our boy deserves all the credit–he’s a seasoned professional. He knows the drill and never fights us. I am in awe of him every day.

Will you be praying for Bo, for us, and for his doctors this Thursday morning? Surgery to remove his line is scheduled for 10am PST. Please pray that it would be smooth, for there to be no bleeding, and for healing to be fast. We learned that both Lance and I will be able to be there, whereas previously because of Covid, only one parent was able to be present. So thankful for that grace!

We cannot wait for Bo to be able to swim, take baths, and do anything and everything 2 year old boys do! We call his lines his “guys” so anytime they fall down and dangle out from under his shirt, he runs to us and says, “GUYS! GUYS!” so that we can tuck them back up. I am curious how he’ll react once they’re gone–he’s had them longer than he didn’t have them. I’ve been trying to prep him a bit by telling him they’re going “bye bye” and he waves and says bye bye to them, so we’ll see what he thinks!

Thank you for your prayers for our precious Boaz! We will post an update on Thursday after surgery ❤️