RILEY ADDISON JOINER

Welcome to Riley Bear's Web Page. It has been provided to keep people updated about Riley's Stem Cell Transplant for Hurler's Syndrome


Riley was born June 28, 1999 to Rick and Jeanne Joiner and was five weeks early. After twenty-four days in NICU, Riley had a rough first year with all the "premie" things. Riley's sister, Sydney was born on July 23, 2000, only two weeks early and fine.

Riley was diagnosed on July 24, 2001 with Hurler's Syndrome.

We went to Fairview University Hospital in Minneapolis, Minnesota for his Bone Marrow Transplant in November of 2001. Due to the lack of rooms in the unit, the transplant was postponed to January 2002. After pneumonia and RSV, Riley was able to get a Cord Blood Transplant on April 1, 2002. Unfortunatley, we found out about April 24 that it was unsuccessful. Riley and his mommie remained in MN until the next transplant on June 8, 2002. Riley received Stem Cells from his original donor that was to be used in November.

Below are some of the milestones we have met and thank God each day for.
Day +13 Riley is 100% Donor Cells Engrafted from his 2nd donor!!!
Day +20...Enzyme Level is 65.8, Riley now has the enzyme he was missing!!!
Day +93...Enzyme Level is 101.0 and still 100% engrafted!!!
Riley is working hard in speech, OT and PT all week long. We can't wait for his next tests to see where he is at. In January 2003 for is six month test, he was around 28-30 months developmentally.

Some family and friends have asked what they can do to help now that we are at home. Rick and I both work outside of the home and still have our amazing sitter, Susan taking care of our little Angels. We are now starting to get all of the medical bills in and are working toward getting those under control. We still have many trips to make to Minneapolis, one being the week of June 9, 2003 for his one year check up. We will have a yearly check up and three or four surgeries in Minneapolis. We have a Care Account set up at our bank for Riley Bear. If you feel you need to make a monitary donation for Riley Bear, please do so. We do not want any one to feel as though they need to do this, only if it is in your heart. We have been blessed with the donations and fund raising we have done in the past year. We believe that God will help us find a way. We just wanted to post this information for those that have been asking for it. Prayers are always welcome and please consider being a living donor with your local Blood Bank!

Please send Monitary Gifts to:
Lincoln National Bank
% Riley Joiner Care Account
P.O. Box 15510
Del City, Oklahoma 73155
(405) 672-1945
Account Number 25537851

I found this poem and wanted to share it with each of you...

The child, yet unborn, spoke with the Father, "Lord, how will I survive in the world? I will not be like other children, my walk may be slower, my speech hard to understand, I may look different. What is to become of me?

The Lord replied to the child, "My precious one, have no fear, I will give you exceptional parents. They will love you because you are special, not in spite of it. Though your path through out life will be difficult, your reward will be greater. You have been blessed with a special ability to love, and those whose lives you touch will be blesses because you are special."
--Author Unknown

Journal

Sunday, May 8, 2005 7:20 PM CDT

Day+ 2years 11months

I would like to start by wishing each mother out there A Wonderful Mother's Day! I have had bit of a difficult time trying to update this page, but found that today would be a wonderful time to do it.

Not all of you know but some do, my mother passed away on February 26, 2005. I a few weeks after her death to update this page and do a dedication to her, but when I checked the message page, I saw where she had signed it just days before she got sick. It just broke my heart to see her note, that I couldn't do the entry that day. My sister had her baby, Dane Gentry Turner on April 7, 2005 and I have been busy with her and trying to get back to "normalcy". Once again that word is trying to come to our lives.

On February 14, my birthday, Riley and I spent the day in the clinic. I celebrated my birthday that night with Rick, Riley, Sydney, Mom, Rick's mom, dad, and grandfather. Mom fixed fried chicken and potatos for us and she later went home. Not the most exciting birthday, but with the ones that I love. The next day, Tuesday, Riley woke up with some fever blisters on his mouth, which if not treated with IV meds can spread internally and can be dangerous. This sent Riley and I to the clinic and then an over night stay in the hospital. Mom kept Sydney until we came home on Wednesday night. Greta came over and brought us food as well as having a visit from Riley's teacher in the hospital. Mom left and went home, said she was tired. I didn't feel well and went to bed early with the kids. I talked to mom briefly the next day. Then on Friday she called me and said she didn't feel any better and her brother was taking her to the ER. I told her to call me. Later that day we got a call saying she was in ICU at Baptist Hospital and they were going to put her on a ventillator to help her breath. My mom had been diagnosed with emphasimia and chronic bronchitis in January 1996. Therefor this was not good. Mom had developed pneumonia in her left lung and her kidneys had shut down. On Saturday, they got the biospy back showing that mom had Septic Shock. The plan was to give her a medicine through her IV, Xigrix. This was to kill the virus in her system. She also received dialisys to help get the poison out of her system. Mom was sedated and was also having problems keeping her blood pressure up. Each day seem to be showing that she made it another 24 hours and there was more hope that she would make it and have a long road to recover. After a week of the same going on each day and the vent was now working at 60% when we started it was 40%. Mom was still stable on Saturday. Her blood pressure dropped and her heart stopped. The nurse was in there when it happened and the doctors worked on her for 20 minutes and said that even if they saved her, she would not be the person we knew before. Mom died on Saturday, February 26, 2005 at 5:45 p.m. Mom wanted to be cremated. We did a viewing at the furneral home on Monday night which she had so many family and friends come. We had a memorial service for her at our church on Tuesday, March 1. It was beautiful with lots of flowers and plants. She would have loved it and I know she did. We were all there for each other and we will continue to be there, just the way she taught us to be.

My mother, Bobbie Jo Duvall Westfall, was so wonderful. She loved each of so much and had such a special relationship with each of us in a way only a mother knows. Momma was so beautiful inside and out. She touched so many lives. I miss mom so much each day but I know she is in my heart and in a much better place that doesn't have medicine, breathing problems, no energy or oxygen tanks. SHe is where she can live her eternal life in a place we all can only imagine about. She had such a wonderful life with many valleys but always came out on the Mountain. Sydney misses her Memie and talks about her every day. Just about the time I think the day is going to be okay and I won't cry, she starts crying and says she misses her Memie. I am so glad she was so close to her and saw how wonderful Memie was. This year at Pre-School, Sydney was asked what she wanted to be when she grew up...."I want to be a Mommy". I know she got this from seeing how great a mom Memie was and I will remind her of that when she becomes a mom. Riley, well, he doesn't really understand. He asks for her sometimes and I have to explain it and only hope that he keeps remembering her. Rick was great during every thing, other than I was sick at the begining of her hospital stay and then Rick go sick at the end. I have so many memories of my mom that I hope I don't ever lose. It wasn't until after she died that I realized that I lost my best friend. She and I had been able to spend so much time together when she was here to help us with Riley and Sydney. She is missed by so many and will always be in our hearts.

I know this is probably not the most organized entry, but for those of you who have lost someone who was so close to your heart, you know how hard it is on certain days. I will add to this later this week, but I at least got it started. Thank you for visiting.

Mom, I love you and miss. Please visit me in my dreams.

xoxoxo.......Jeanne

Hospital Information:

Patient Room: So Happy To Be Home!1

The Joiners Home
3604 S.E. 22nd Street
Del City, Oklahoma 73115
405-670-5699

Email address  : jeannejoiner@hotmail.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 29708 times.

Site Sponsored by: