Hi everyone!
This is my second post for today, Sept. 2nd, 2008. These posts show up chronologically, so my first post I did earlier today is below this one on the blog. I’m writing another one because there has been a huge change in Jillian’s treatment plan.
They have decided that Jillian cannot have the regular stem cell treatment. If you read my first post from today (before this changed again) I explain what she is allergic to and why. They had first decided that she absolutely could not have the regular stem cell treatment, so they were going to make a special formula for her…….it’s all in the first post I wrote today.
But now they said that even though the risk is minimal with the special formula, they don’t want to take any risk. Which I’m good with that, because it seems that my little girl is good at hitting those small odds, and I would never even think to chance her life or anything that might impact it negatively in the least.
So now we are going forth with the bone marrow transplant instead. They aren’t worried about her age or size. They have performed it with success on children as young as 3 (which she JUST turned 4). The doctor only needs a very small amount, 50 ml, and then they culture the cells to grow and multiply. There is no risk of her rejecting or having a reaction to her own stem cells from her own bone marrow.
I was told that a bone marrow transplant is actually better than receiving donor umbilical stem cells. The doctors have told me this, and I have asked around to the other families, and everone says that they have all understood that a BMT (bone marrow transplant) is better too. The amount of stem cells from a BMT is 6 to 7 times higher than from an umbilical cord injection. Also, bone marrow stem cells are much stronger from a child because they are so young.
She will have the bone marrow extraction on Thursday morning about 10 a.m. (so 10 p.m. on Wednesday night for you all). Then the stem cells derived from her bone marrow are grown in a culture and allowed to proliferate and multiply. Once the stem cells multiply, then she will still have her first injection by IV, and the next injection will be by spinal. We don’t know how many injections she will have total because it depends on how well the cells grow in the culture. We are hoping for 4.
I know……this is huge. Please pray, okay? The only risk with a BMT is if too much is extracted then the person’s blood pressure will drop and they can go into shock. I’m sure she will be okay because the doctor that will perform the extraction, Dr. Mike, is the head doctor in the hospital and has a reputation for excellence. Besides his skills, he is very caring and genuine and, as he says, he is also a father. And as Dr. Mike said, they are extracting only a very small amount.
So…..that is what is happening now. So when you’re sending out the prayers for Jillie, if you want to throw one in there for me to not be a basket case for her first spinal injection, I would really appreciate it. When we were doing the original plan of umbilical cord stem cells, my mom was going to be here with me so there would have been a hand to hold, but now the first spinal is after she leaves and I’ll be here all alone with Jillian. Anybody want to come to China? Being here alone with my worries for any of the spinal injections is bad enough……but the first one……????????
Take care, everybody! And PLEASE remember to talk to God about Jillian every day!
September 2nd, 2008
Hi wonderful friends and family!
First, thank you for all of your posts sending love and support! As I was reading them I got a little misty-eyed. It’s uplifting to know there are so many people out there that care. If people, love, support and prayers are a measure of the success Jillian will have, then she will surely receive a miracle!
I’m sorry I haven’t posted until now, but, first, I couldn’t access my blog, and then secondly, that little thing we know of as “not enough time in the day” seemed to have made the flight with us, and brought its friends too.
Did you know that the Chinese food in America is nothing like the Chinese food in China?
Oh, that’s right, you want to read about Jillian and our journey, not the cuisine in China! 
I have really big information to tell you about, but I’ll just fill you in chronologically…..so stay with me and don’t peak to the end. Hint: Jillian is rocking the stem world over here.
We arrived in Shanghai and were met by a driver and interpretor from the hospital. Man, that was a long flight. Then we drove for 2 and a half hours to Hangzhou (prounced Hangjo). We were taken up to our room on the 20th floor and were met by about 10 bouncy, bubbly, super nice Chinese nurses and staff. They took Jillian’s blood pressure, all that stuff, and generally (and not surprisingly, because she is so darn cute) oohed and aahed over her.
Her little circadian rythym clock is definitely off! The first night Jillian was awake at 1:30 a.m., the second night 2:15, the third 2:40, the fourth 3:30, and last night 5:00……..and NEVER went back to sleep all of these nights. Not to mention that the night before we left, at the hotel in Atlanta, she must have been so excited that she wouldn’t go to sleep until 2:30 a.m., then only slept on the plane for about 4 hours. So I think you have gathered by now how wiped out she is. My mom and I could use a little shut-eye too I guess. By the way, thank God for my mom!!!
The doctors are so VERY very thorough. I’ve been asked more questions by one doctor than I think I have collectively by all of her previous doctors. Because of Jillian’s dairy allergy, her assigned doctor, Dr. Jack, ordered a skin test to see if Jillian would be allergic to the stem cell injection. So in came a couple of nures with a little needle to inject a substance under the skin on her wrist. Sure enough, she had a reaction. This is not good…..it means Jillian is allergic to the stem cell formula that we came over here to get for her.
They called the head doctor, Dr. Mike, (wonderful man) and he was almost home, an hour away, and he turned around and drove right back and came to our room. We were told that Jillian cannot have stem cells, she could have an extreme allergic reaction, could even be fatal. We were distraught. At the same time we were thankful that they discovered it because she could have had the first stem cell injection and we could have all lost our little girl.
What Jillie is allergic to is the plasma portion of the stem cell formula. There is a protein that she is allergic to. That is the red and white cells, the fluid/blood, the storing medium, that the stem cells are injected with. And I remember when Jillie was a little preemie, her gastro doc said she was allergic to “in tact proteins.”
At that time we were given the option of proceeding with a bone marrow transplant instead. But I had not researched and educated myself about bone marrow transplants! In this instance, she would have a surgery where they would put her to sleep and inject a “needle” into her hip and extract some of her bone marrow. Bone marrow basically has our own stem cells in it. It’s what you hear about when they say adult stem cells. Like umbilical stem cells, it has neural regenerative abilities, meaning it could also regenerate damaged brain tissue. The problem is that Jillian is barely over the weight requirement for a BMT (bone marrow transplant). People have to be at least 30 pounds. She is about 31 pounds.
So we went to bed that night really upset and just decided to leave it in God’s hands.
The next morning, about mid-morning, Dr. Mike came to see us, all excited. He didn’t go home that night, instead stayed here to find a solution and have a big meeting with all of the other head doctors from all of the hospitals and the laboratory. He said he had been up all night thinking about this. What he found was that Jillian can have the stem cell treatment after all! Instead of the regular stem cell formula that is injected which contains the plasma, they will remove the plasma, and instead it will be in a sodium/saline, which there is nothing to cause the allergic reaction. AND this means there will be a higher concentration of stem cells! This was huge news! Everything is going to be fine………AND we’re getting something better than what we originally came for! Dr. Mike will personally be in the room, which I guess he isn’t normally because he’s the head doctor, to ensure there is no problem.
So because of all of the previous discoveries, Jillian has not received a stem cell transplant yet. She’s had her blood drawn and a CT scan. So tomorrow, Wednesday afternoon (the middle of the night while you are all sleeping) Jillian will have her first stem cell injection by IV. Her first spinal injection will be on Friday afternoon (Thursday night while you are sleeping.)
And here’s how I know that God is watching out for Jillie Bean and that everything is going to be okay……….better than okay……great! You all know that our hospital location was changed at the last minute. As I have found out, unanimously from many many people, this hospital is the premiere stem cell hospital in all of China and is known for being ultra conservative with regard to risk. The previous hospital we were assigned to is unanimously known to NOT be conservative with risk. So I’m convinced that if we were not changed at the last minute to this hospital, this allergy test would most likely not have been performed, and we could have all lost our precious little super star on the first injection.
So, see? Everything will be okay! And I know that all of your love, support, and prayers is making a difference in this experience for Jillian.
I have more to write about, little things like how the Chinese kids point at you, how you really stand out in a crowd……lots of little things. But I think this post is long enough already.
So please all continue to send prayers, love and light out for Jillian! And thank you for that in advance.
We love you!!!! And I’ll post again after her first injection tomorrow.
September 2nd, 2008
Hi family and friends!
We’re practically on the eve of beginning our adventure in China to begin changing Jillie Bean’s life for the better! Wednesday morning, 10 a.m. eastern time, I, Jillian, and my wonderful mom will be on a plane heading across the big blue planet to China for a 16-hour flight. We will arrive in Shanghai, China, and will then go to Hangzhou, China, where we will stay in the hospital for one month while Jillian gets stem cell treatment. While I am very very excited, I won’t deny that my stomach spends most of the day up in my chest, doing a twisty little dance most of the time! Please keep Jillian in your prayers and send lots of love and light her way for ultimate sucess! I will try deligently to update this blog and let everyone know her successess as she has them. If you think you may be experiencing a sudden earthquake, don’t worry, it’s just me jumping up and down and screaming for joy….I’m sure it will be heard and felt around the globe! Thank you all for caring about that little curly-blonde-haired, blue-eyed doll face named Jillian!
August 25th, 2008
