First stem cell injection received (9/11/08)
September 11th, 2008
Hi loved ones!
Okay…….Jillian has received her first stem cell injection! This injection was by IV, not spinal. She will receive the first spinal injection next week. With the IV, of course, it goes through the veins, but it still goes to the brain from the outside through the white matter, according to the doctor. When she receives the spinal injection, it will go directly into the cerebral spinal fluid and will travel directly to the ventricles in the brain, which is where the damaged tissue is.
The amount of the stem cells received was 20,025,000 (over 20 million). In an umbilical cord stem cell injection there is between 10 to 15 million. I guess I was mistaken about there being 6 to 7 times the amount of stem cells when it’s derived from bone marrow instead of umbilical cord. There is even someone that works here that I asked if that was true and they said they have always heard that was the case as well. But I guess I misunderstood. The lab counted the cells produced thus far and there are 100 million cells for injection. I’m pretty sure that she will still receive 4 injections total (the one IV from today and 3 spinals). But there will be more cells per injection. So this is GREAT that her little bone marrow produced so many stem cells!!!!!!!!!! She’s a strong little booger, ya know!
Jillian did have a slight allergic reaction though. While the stem cells were flowing through the IV, they also put in some medication which was anti-allergenic. But still, right after we got back in the room, we noticed a red rash around her throat area, also on her tummy around her belly button, and the outside of her thighs on her legs. She acted okay though. They gave her some more anti-allergy medication through the IV that was left inserted, but unconnected, in her hand. Within 10 minutes the rash was gone. She is acting just fine. She wouldn’t take a nap though so she’s a little tired.
She is running a little fever. But I have no idea if it’s from a cold that half of the staff has in the hospital or whether it’s from the stem cell injection. It’s driving me crazy not knowing too. I’ve asked other families, and they said they their child, or significant other, didn’t get a temperature after the IV injection, just after the spinal. BUT…..she did have a little low-grade fever this morning BEFORE the injection, then it went away on its own. So I just chalked it up to maybe the room was too warm or something. Then a few hours later, after the injection, I asked the nurses to check it again, and, yes, it was about 99.8……which is high for her. We’ve given her some Motrin, and it has brought it down. But it hasn’t brought it down to her normal….which she normally runs around 97.4, around there. It’s just that you don’t want a fever after receiving stem cells……the fever can kill off some of the stem cells.
The nurse just came in and checked while i am writing this and it is down to 97.4, and she is sweaty. Hmmmmmmm.
Jillian has sneezed a few times tonight. Man, I have been pretty anal about using Clorox wipes and wiping everything down when the first sign of a cold appeared here. Every time I come in the room after being in a common area, say around the microwave for instance, I sanitize my hands. I make sure the helper (we call her LaLa, by the way) keeps her hands clean too. Murphy’s Law isn’t supposed to be in China! How can it be that on the day of her first stem cell injection she starts getting a cold???!!!!! At least I’m leaning toward it being a little cold. I’d rather it be a cold than a reaction to the IV injection.
So everyone……… her first dose of magic mixture is circulating around in her little body, working miracles as we speak (or type and read)! Thanks, God, for this opportunity for our little girl!
Here are some pictures of the event so you can feel a little more connected……. (I look absolutely horrible…….yes, I do, and I know it. If it weren’t such a big event, I’d never be publishing myself on a public blog in the “condition” I’m in……but, hey, it’s all part of putting the kiddo first……!!!!!) Remember that you can click on a picture to enlarge it if you want to.
In this first row of pictures, Jillian has her IV in and they’re just running fluids through it. She is fascinated with this toy duck. It made her quite happy and you would never have known she had an IV in her arm.
This is Luca…..he is the patient coordinator. He’s been invaluable. Such a nice and caring guy. He was there for the whole process, from before the IV stick to going back to our room.
This is Dr. Mike. I’ve told you how wonderful he is. He’s the head doctor. Normally he isn’t present for IV injections, but he was with us for the whole process too, from before the IV stick, to going back to the room. Jillian received the VIP treatment with having Dr. Mike present.
I am actually holding the bag of stem cells in my hand before it is attached to the med pole.
Watching the miracle mixture drip, drip, drip into the IV.
Even the technician from the laboratory came up to see that everything was going good.
This is the rash that appeared on Jillian’s neck. It got redder after I took the picture. Had me worried.
So Jillian won’t allow even me to just TOUCH her right hand/arm with the IV in it. It’s still in, even as she’s sleeping. They’ve got it covered up pretty good so she can’t get to it in the middle of the night. But I think I’ll sleep a little lighter tonight just the same, in extra alert mode. Also because of her temperature issues, and to make sure she’s not too hot or too cold.
With that being said, I better hit the hay! I’m sorry it took so long to get this update out to all of you. Especially since I know many want to know as soon as possible how the injection went. I tried to get it out by morning because I know there are some of you that are actually checking the blog in the morning before you go to work. I’ve been working on this all day off and on, but things kept coming up.
I’ll post again tomorrow to let you know how she’s feeling.
I love you all! So does Jillian! PLEASE keep those prayers coming! Please!
Love,
Tami and Jillian
Entry Filed under: cp,Uncategorized
15 Comments Add your own
1. Gwendolyn | September 12th, 2008 at 5:01 am
Way to go!!!!!!!! Woohoo!!!!!!!!!
Jillie, you are so brave and miraculous, you beautiful little angel!!!
Many, many, many hugs and kisses from Auntie Gwen and Uncle Keith!
Star, You are absolutely gorgeous and the amazing light that you ARE shines through ever single photo! I just wish I was there with my girls!!!!
Brian! we are thinking of you. What patience it must take for you to go about your everyday routine and dealing with clients and bosses and work, when this incredible, amazing, life-altering event is going on. I have seen the tenderness you have when caring for Jillie and I know you must be missing them. We are sending you lots of love!
P.S.
just a thought, but i just realized that other comments that i sent did not actually post. I have looked back and tried to find them but they are not there. Maybe this is happening to you, Brian as well, and if so, must be really frustrating. i finally figured out that I was typing that ridiculous anti-spam word in the wrong slot. (sorry, but I am not blog-savvy or very computer savvy either for that matter.) anyway, hopefully this one will post and help things out a little bit in that dept. who knows, maybe we are not the only ones?!
2. Toni and Pete | September 12th, 2008 at 5:05 am
Sending love and prayers that the fever has gone away and that you and Jillie slept well. So, the first step of the miracle has been accomplished. Full speed ahead!
Toni and Pete
3. MOM & KAYLA | September 12th, 2008 at 8:31 am
HI BABIES, GLAD TO HEAR THAT EVERYTHING WENT GOOD. I AM SO EXCITED ABOUT THE AMOUNT OF STEM CELLS THAT JILLIE IS GETTING. I HOPE YOU DID AS GOOD AS JILLIAN THROUGH OUT THE TREATMENT. I WAS WORRIED ABOUT YOU. WHENIS CAROL GETTING TO CHINA? WHEN IS JILLIES NEXT TREATMENT? I HOPE SHE WILL BE THERE FOR THAT. PLEASE FIVE THE DOCTORS, STAFF AND INTERPERTERS MY LOVE. THEY ARE ALL AWSOME. YOU BOTH ARE IN MY HEART AND PRAYERS. I LOVE YOU SO MUCH. IF YOU NEED ME THERE JUST GIVE ME A CALL AND I’LL GET BACK IMMEDIATELY. I HAVE A NEW PHONE NUMBER AT THE RANCH. 386 842-5702. CALL MY ON SKYPE. I REALLY WANT TO HEAR YOUR VOICE. LOVE AND KISSES. MOM & KAYLA
4. grammakuna | September 12th, 2008 at 8:38 am
Oh !!! What a day you had. And what an amazing place you
have taken the bean. I am so impressed with Dr. Mike and the
entire staff at that hospital. My awe and thanks go out to them.
But, the good news is, you both made it !!!!!!!!!!!. The first one is a
done deal. Now you can move forward with confidence. That
is not to say we’ll stop praying, because we won’t. If anything,
we’ll pray harder because we know pray works. We are all
there with you in heart,soul and love. Have a great day.
Love and sugar Gramma K XOXOXOXO
5. Michelle Hirt | September 12th, 2008 at 9:18 am
Congradulations on the first one going so well. Hopefully the fever and the rash are gone and Jillie bean is as happy as always. Sending our love and prayers to you!!
Love,
Hirt Family
6. Varinia | September 12th, 2008 at 10:48 am
Hi Tami,
Hang onto it. Corvin too got a cold after the first IV injection, and it was the same that a cold was going around the patients and teh staff. It may be also that his body is adjusting to the cells. Make sure she gets plenty of water. Before one of the spinal injection he had almost 38,5. This was just from being alert playing on teh computer and had a red throught. I decreased it by brushing his body with a very warm wet towel and giving him water. Once they put more fluids through teh IV teh temperature dropped to 36,5.
You can ask for extra fluids if you think she did not drink enough. When you have temperature you need extra fluids to bring it down.
I really hope things will get back to normal for Jillie. What type of spinal she will get? local anaestesia or general anaestesia?
You are right both Luca and Dr Mike are all heart for the patients. Both of them were so nice and helpful to us too.
Both oy you look good. Make sure Jillie and you rest enough. I would skip therapy for teh next day especially teh physical or the part that is stressful for her. It is better for her to relax and get back to normal and then resume the regular therapy schedule. After each of our injections teh only thing we did was electrical stimulation teh next day.
7. heidi Dragomir | September 12th, 2008 at 3:10 pm
Yeah!!!! I’m so glad the first one went smoothly. I would be as anxious as you are counting every sneeze and doing the detective work as to what is causing it. You and Jillie look great and Jillie is so sweet smiling in all the pictures, I take this as a result to your continuous care for her that has allowed her to adjust to everything so well. I hope your friend is still singing to Jillie and I’m glad Doc. is giving yall the VIP treatment you deserve it. I couldn’t sleep so I decided to see how Jillie is doing so it’s 3 am now. Thanks for keeping us so connected I’m sure if any one of us do this for our kiddos next we will be less anxious due to your sharing of your experience.
Take care,
Sending lots of love across the ocean.
Heidi, Bhakti
8. Janet | September 12th, 2008 at 7:10 pm
This is your friend from the Delta flight again. I praise God with you for the good report. I am remembering you all. Keep On Keeping On! Blessings to you both. Say hello to Grandma too.
9. Jim and Beverly Baitsholts | September 13th, 2008 at 4:48 am
Dear Tami and Jillian:
It’s so great to have the opportunity you are going through. Lots of love to you both and to Brian holding down the fort at home. This little girl is so lucky to have such wonderful parents who WON’T GIVE UP!!!! I will check back to see how it is going.
Love, Bev
PS–Catie sent me the link to your blog, so she is watching too.
10. Jenn | September 13th, 2008 at 5:38 am
Hello Family
We are so happy that you guys have started the stemcell.We would expect Jillie’s cells to grow so well. after alll she’s allways eating well, and has so much Love and prayers coming her way. We are so happy for you both. Continue to enjoy the trip. And know that we are all in your heart. We will continue to send you Strength, Hope, Love, AND PRYERS.
Love All of You
11. luanne russell | September 13th, 2008 at 5:45 am
I’ m thinking of you and Jilian and pray that all goes better than expected. You are a very brave pair of pretty girls. Keep in touch.
With love,
Luanne
12. Sharon and Jason | September 13th, 2008 at 10:22 am
Hey girls, I’m glad the first injection went wel but sorry you have stuff to worry about – that detective mode is very trying I know.
Love you both,
Sharon and Jason
13. Gretchen and Sam | September 13th, 2008 at 10:58 am
We’re glad the first injection went well for you. We’re praying the fever is gone soon and Jillie is back to her self. Tami please try and get some good rest. I know it’s so hard when we don’t know what’s happening with our little ones. Praying for you both!
Love,
Gretchen and Sam
14. Lori and Billy | September 13th, 2008 at 11:35 am
Hi Tami and Jillie,
I’ve finally gotten on the blog. I love the pictures! Rebecca loved looking at them also. I’m so happy to see you and Jillie looking so good. I can’t imagine how tired you are but when I look at your face I can see all the hope and love you have for all you are doing. I admire how stong and brave you are Tami, the apple doesn’t fall far from the tree, so it’s no surprise that Jillie is the stong little girl that she is! We’ve been thinking of you lots. Give Jillie Bean a kiss for me, and another one, and another one, and one more!
Love you, God Bless You
Lori Billy Rebecca Vincent
15. Jim and Jamie | September 13th, 2008 at 10:17 pm
Hi
Congratulations on the first injection. I know all will be fine, our prayers are with ya’ll. I’m keeping the rest of the family up tp speed on the progress. All send their best and prayers.
Even though I seldom post , I read the blog daily.
Gods speed
Dad
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