Sam's Cord Blood Infusion at Duke

This summer I reached out to Duke inquiring if Sam would be eligible for their expanded access cord blood program. Duke has been trialing the use of cord blood stem cells to treat cerebral palsy for many years. Phase I and Phase II of the trial ended a while back, and they are now raising funds for the next phase in the hopes that someday, their work will be FDA approved and widely available across the US. 

Currently they are accepting patients for their expanded access program. This is a fee based cash pay program that allows patients that meet certain criteria to participate. Aria unfortunately is not eligible due to her Schizencephaly diagnosis. Originally, Duke said Sam didn't meet the eligibility either. From the documents we provided, it appeared Sam was a level 5 on the CP scale, when in fact, he is a level 4. After submitting documentation showing this, Sam was approved! He completed HLA typing via cheek swabs in the fall and was then matched with a cord blood unit and scheduled for the infusion at Duke the first week of March.

On March 1st, Sam along with Shane, Aria and myself, boarded the plane bound for Durham, NC. Duke, here we come!

 

It was a beautiful day in Durham. Their first warm day of the season. We enjoyed a stroll and lunch outside while we waited for our hotel room to be ready.

The next day we drove to Duke University Hospital for Sam's physical. Sam of course ended up catching a minor cold. I was worried they'd want to postpone, but the nurse wasn't at all concerned and cleared him for his infusion the following day. They attempted a blood draw for lab work and got him on the first poke, but unfortunately his vein blew so labs would have to wait until the next day.

Day 2 at Duke was just Sam and me. No extra people are allowed in the oncology infusion area to reduce the risk of germs as there were a number of cancer patients being treated while we were there. We entered a small private room with a bed and got as comfortable as possible while we waited for Sam to get his IV placed. Thankfully they asked one of the well-experienced nurses to place the IV, and she got it on the first try. Sam fought so hard to hold back the tears. I thought for sure he would burst out crying, but he didn't even shed one tear! He was so brave. That was thankfully the worst of it. Then they took a blood sample from the IV to the lab to make sure everything looked good and gave him a couple medications via IV to help counter any potential allergic reaction from the infusion.

Labs came back great and the Cord Blood registry just a few blocks away was given the green light to start prepping the cord blood unit for Sam's infusion. The wait for the cord blood to arrive was the longest part of the process. After the cord blood arrived, it was hooked up to his IV and before we knew it, we were done! He received 32 million cord blood stem cells.

Sam did amazing! The only odd side effect that has happened to all the patients is a weird creamed-corn type smell from their breath. This started even before we left, but thankfully no allergic reaction. We were soon discharged and headed back to the hotel.

With all our appointments over, we took a stroll around the neighborhood, stopping to grab apps and drinks.

The next day, we had our check-in call with the nurse at Duke. It only took 5 minutes as Sam was acting his normal self. With no negative side effects, we were given the green light to fly home. 

Now we wait and see if the stem cells have any positive impact. At this time in the research, benefits have varied greatly from those not seeing any positive gains to those seeing substantial gains so only time will tell. Sam has enough stem cells left in the cord blood unit that he was given that he could potentially have another infusion in a year. We will wait to see what gains we see in the next 6 months and then make a decision at that time. Praying for some big bursts of progress for our little boy.