Reaching out to a Community of Support

All Journal Entries

Day +57 Inpatient, quarantine, testing, testing and more testing

by Trevor Clarke III

We enjoyed the few days we had at home. It was peaceful and uneventful. Then on our regular clinic visit (I'm summarizing) he was presenting with neck swelling and they wanted to "do some testing " and " watch him overnight ." Well......the swelling got worse and became accompanied by... [READ MORE]

Day + 46 We outside....Well like it's March 2020 #quarantine

by Trevor Clarke III

Things can change quickly during the first 100 days post transplant. I ran to the grocery store once and came back to a nose bleed exacerbated by low platelets. He was so tired and weak before the bleed that it took everything in him to handle it during the ten... [READ MORE]

Day +42

by Trevor Clarke III

No blood products needed at clinic visit this week so far. His magnesium is low and he may need to get it bumped up through his IV at tomorrows visit, but he's eating a little better so I'm hoping it will go up naturally.  Engraftment is still going on slowly with... [READ MORE]

+Day 39 transition to home

by Trevor Clarke III

We were released on Monday. June 6, which was day 35. It was a late afternoon, early evening release that almost didn't happen. Sunday night he had a pain episode that was reminiscent of a Sickle Cell pain crisis. He was screaming and writhing and complaining of back pain. They... [READ MORE]

+Day 28 Still here!

by Trevor Clarke III

There are many idiosyncrasies with long-term hospital stays, and rounds are one of them. You're basically welcoming a team of highly trained specialist into your home not really knowing when they will show up. Dr. Connelly did rounds today. He's our favorite not only cause he's a genius, but because... [READ MORE]

+Day 26 101 fever at midnight

by Trevor Clarke III

A fever is the last thing I wanted to hear about tonight! Especially after preparing to go home! Right now it's at 101.1 which is not good. Last time he was febrile, which was day 1 or 2, they took blood for a culture, which eventually came back with no... [READ MORE]

day +19

by Trevor Clarke III

Woke up bright and early to the most massive nose bleed! It lasted for a good 2 hours and we used every towel available to us to soak it up. He is low on platelets, of course, due to everything. Platelets help the blood clot at the sight of injury,... [READ MORE]

+18 Days post transplant

by Trevor Clarke III

Generally speaking, this is the day where the bone marrow has found it's way to it's dedicated spot inside of the body. The new bone marrow begins to take over the work of the old marrow making his neutrophil count go up. Neutrophils are the first white blood cells to... [READ MORE]

Day +13

by Trevor Clarke III

I can't even believe that we have come this far so quickly! Even though we are stuck in the hospital, we have stayed busy so time seems to be moving by quickly.  Every 3 or 4 days I rearrange the furniture in the room (couch and chair). It's amazing how big... [READ MORE]

Day +11

by Trevor Clarke III

The past few days since the last post have been up and down. He is being monitored very closely and being given a ton of medication to prevent things like Graft vs Host Disease (GVHD),    GVHD is a condition that occurs when donor bone marrow or HCT attack the... [READ MORE]