By Brenda Grabast
BEIJING, China -- We made it to China after a close call in Minneapolis. We had 20 minutes to make it from terminal C to F. A buggy-guy helped us out.
Derek handled the flights absolutely wonderful. From Saturday morning until we landed in Beijing Sunday he managed to sleep for two hours. Me, not so much. There was so much going on, he didn’t want to miss anything.
Grace is our coordinator, and you will hear a lot with her name in it. Grace and the driver picked us up, and it was a very quick 45 minutes to the hospital. Derek was excited with all the lights and activity, so he didn’t go back to sleep until 2:30 a.m. Then the little booger woke up at 6 a.m.
We are trying to get our days and nights right, but Derek is not adjusting well. He went to bed at 8:30 and was up at 2:30 this morning. We met with all the doctors and therapists, and today it’s more meetings, tests, and prep for tomorrow.
Since the wifi connection is poor at best, I will have to wait until Derek is in therapy to go to the cafe and get a good signal. I can’t load or update Derek’s Facebook or blog right now since the connection is weak. But Sandra is doing it for me. Thanks Sandra. And a big thanks to Cindy for updating Facebook yesterday. The wifi here is, well, iffy.
It looks like the first procedure will be Wednesday, so — 24 hours from now. We are off to physical therapy, occupational therapy, then acupuncture and Chinese massage.
We managed to get to Wal-mart for some basics for little man, and let me just say — our super Wal-mart in Great Bend would fit inside one corner of this one. Grace took us from floor to floor like a pro. She is really a blessing.
Time to go, but there will be more later (providing Derek lets me steal his iPad again) lol.
The next day, started great with PT and OT.
Derek then had TCM (traditional Chinese medicine) and then went in for the harvesting of stem cells. He was gone for 45 minutes. With a little grumpiness and an attitude, we didn’t do much the rest of the day. We went for a couple of walks, and Derek got to see a couple rock waterfalls (man made, of course) with goldfish. He loved them! He fell asleep about 7 p.m. and rested until 4 in the morning.
At 6, they came in to check blood pressure and temperature, which have been great. When the nurse left, the head of neurology came in.
I thought “wow! Not just AT work at 6 a.m., but checking on patients too. Her name is Dr. Zhou. We started talking about how Derek has done over the past several years. It’s like she was there through the whole process. She knew his entire chart. I’m talking from medications to surgeries to number of seizures. I was really impressed with the time she had taken to familiarize herself with Derek’s case.
Then, here came that freight train — Derek’s stem cells cannot be used.
What? Why? I thought? But how? These thoughts ran through my head, and before I could spit them out, she started the explanation.
She has only seen it a couple of times. She gave me two reasons. No. 1 — the quantity of stem cells harvested was far too low. I thought to myself, “we’ll go in and get more.”
She said the quantity of marrow harvested was the normal amount. For another extraction we would need to wait at least two weeks. Okay, we can work with that, I thought.
But then, reason No. 2. The viability of his stem cells was extremely poor. Out of what they did harvest, they could only use 5 to 7 percent, they like around 98 percent.
The amount left to use, was also significantly weaker then they prefer. I thought, well, that’s some hope. She said that with that low of a viability on the cells; No. 1 — it wasn’t up to the standards of the government, so they couldn’t do it anyway. No. 2 — she said using the sample they now had left would be as useful as injecting straight saline into his spine.
I asked about options. We could use donated stem cells. I objected. After a two-hour discussion, I learned the cells come from healthy babies’ donated umbilical cords. The family medical history is thoroughly researched three generations. The cells do not have an immune system yet — so GVHD would not be problem.
So I called my husband Ken on what to do. This is not what we wanted. This is not the path we were taking. Do we give up and come home? Abandon all hope for “Little Man?”
Well, keep watching for updates and progress reports, ‘cause we’re staying here.
This was the only other reputable facility that would use Derek’s own stem cells, and since we can’t, that left us no other choice. For him to have a chance, since his own body can’t provide the help, we are going to rely on stem cells from little Chinese babies.
Today was a tough day. Derek was wore out from yesterday, so the therapy was kind of hard. And my brain has been absolutely ran though the ringer.
Tomorrow will hopefully be better. It’s just another chapter in our journey with Derek.
EDITOR’S NOTE: The Great Bend Tribune will follow the journey of Derek Grabast of Hudson for innovative stem-cell treatment in Beijing, China.
By Brenda Grabast