My Daughter, My Hero!!

Jessie

Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.


Jessica’s Journey


This web site has been provided to tell the story of one of the bravest young ladies I have had the pleasure of Loving! Jessica came to live with me when she was 4 months old she was just 5 lbs. She was born on May 2nd 1991, weighing in at 1 lb.4oz, from birth she was a fighter. Jessica progressed pretty much like any other baby, delayed in some areas due to her prematurely but a beautiful, wonderful baby, always pleasant! When she was 18 months old she had an unexplained seizure. She started preschool when she was 3 yrs old. She did well and enjoyed going. She started Kindergarten in 1996, she does well, with some help she is an inclusion student. In 1997 she became a permanent part of our family!!! Up until she began 4th grade in 2000, she seemed to do ok in school. In October of 2000 she started to complain of pain in her legs, she was eating not enough to keep a mouse alive, she was sleeping all the time. When I took her to her pediatrician he did some blood work and put her on an iron supplement, her hgb was 10 at the time. We continued this treatment up until January of 2001. In between there were a few calls to doctor to let him know things weren’t getting any better but worse. He asked me to watch her through the Christmas holidays and report back to him after the holidays. Jessica was just not the same, she was always sleeping and told me when I made her come for dinner that it turned her stomach to watch us eat……I thought could she possibly have an eating disorder???? I was so concerned, but really seemed to be the only one…was I being an over reacting mom???? I just knew in my heart and in my stomach something WAS terribly wrong with my baby….We went to see her doc on Jan 11, 2001 at this appointment he again checked her iron which after 3 months climbed to 10.5. So his decision that day was to just continue with the iron….He told Jessie you are a very healthy young lady and you need to eat and not worry your mother so much…. I asked for further testing I was told not to overreact….. Well Friday night Jan. 12th Jessie was up most of the night with severe pain in her stomach, my mind was totally focused on the fact that she was on iron and at this point is certainly constipated. So my answer to her was sit on the potty and try to go……….. Well Saturday morning came after a very long night….She was still crying with pain……I asked her to dress and come down stairs I would call the doctor. When I called they were busy and would call me back. When she came down stairs she was unable to zip her jeans. She had lost about 10lbs and her clothes were falling down, now today she was unable to zip them???? I had made her a cup of “slow moves tea” hoping to help her bowels along and on advice from the nurse at the doc’s office I gave her a warm compress for her belly. Well she no sooner drank the tea then up it came. At this point I wasn’t sure what to do……My sister-in-law is an ER nurse at our local hospital and she was on duty so that is where we headed.. As we entered the hospital Jessie turned to me and said “mom I do Not want surgery” I smirked and said who said anything about surgery I am hoping they can just give you something to make you go poop…..Well this is the day as many can imagine that changed Jessie’s life and ours forever….When all testing was complete the doc told me there was NO good way to tell me what he found…Jessica had a tumor in her liver that took over 80% of the center of it 10% on each side of the tumor was still functioning, her liver numbers were fine I remember looking at my poor sister-in-law and saying” Lori do you need your liver to live??’ With a tear on her cheek she said yes. I knew then this was very serious, here I am trying to make her have a “poopy” if it were only that simple……
Well to continue the doc asked me where I wanted to go he suggested a children’s hospital, he mentioned both Hershey and Geisinger. I told him I would call Hershey on Monday morning, he told me "the ambulance is on its way when they arrive you let them know Hershey was your choice…" WOW... no time at all to process all of this….Jessie started to cry when she heard all that was being said, here she is 9yrs old &"a VERY healthy young lady” She turned to me again and said, “mom I do not want to die….”What was happening…I called my husband and asked him to come right away and she was crying for my mom so we had her come to, it was a very emotional time. She said goodbye to everyone like she would NEVER see them again. Her doc showed up or should I say one of his associates, she was a doc I never really cared for she showed very little emotion. When she saw me she reached out and hugged me and started to cry, wait this is a women I was sure had no feeling, this is bad real bad… Well before I knew it we were in an ambulance with my husband following behind and we were off to Hershey Medical Center which was home for 1 month, in that time they did her diagnosis, put in her med port, did a round of chemo, she received the big guns I was told. You see her cancer was VERY VERY rare only found in adults back in the 80’s with NO survival rate. WHAT!! Where did it come from… We spoke to her oncologist Dr. Freiberg, wonderful doc, he told me he had no protocol to follow at all…..so comforting….NOT….He spoke of the only cure that might work this would be a few rounds of chemo to try and shrink her tumor and then transplant her liver…WHAT…These things only happen in the movies…right… Well while she was in the hospital Dr. Dunn from AI duPont Children’s Hospital in Delaware came for a meeting, he asked to see Jessie as he thought maybe he could help. He came and met with Dr. Freiberg, Jessie and I, he was the most wonderful person you could just feel it when he entered her room. He explained the transplant procedure and told me what to expect. I asked him few questions, how do I find someone , he said the only real requirement is that they have the same blood type to start, Jessie is A+ which was a plus nothing rare. He assured me her insurance would pick up all expenses and even the donors, WOW, I never expected that! Well the meeting was over and there I sat praying and hoping the Lord would put that person in front of us sooner then later. The phone rang and it was my sister, she lived in Maine at the time, she was curious as to what Dr. Dunn had to say. I told her everything and I said what am I going to do? She said “I will call you back” and hung up. Wow I thought I need her and she hangs up….Well in less then 10 minutes she was back on the phone screaming I match I match I am on my way home, I said oh no she said oh yes try and stop me. She was home in 3 days and began her testing, we kid her to this day because there was concern whether her liver would be big enough to donate to Jessie, when we asked Kathy NP, she said you have a HUGE liver how thankful we are!
Jessie finished 3 rounds of chemo that honestly wiped her out. When she recovered with her counts after the 3rd round we were ready for transplant. She was admitted into AI duPont on April 1st 2001 and had her transplant on April 3rd 2001, my sister giving her the Gift of Life! Both did well with the surgery, my sis said,” I thought you said I would feel like a truck hit me? Not 2 trucks!” Tracie was in the hospital about 1week. Jessie was there for 1 month. She came home for 2 days and was back in for 14 days. After she stabilized she had another round of chemo in June 2001, and yet another in October 2001, this one really did her in. She looked at me and said “ Mom please don’t let them do this to me again” it broke my heart, but after a lot of praying and thinking we decided not to give her the final 2 rounds of chemo. I was bluntly told, if we do the chemo it is likely we will loose her to infection, if we don’t and this cancer comes back we will loose her to it. So as I sat between the rock and the hard place we decided to put our faith in God and also follow Jessie’s wishes. Someone had said to me that Jessie was so immune suppressed that if there was any cancer it would be having a field day, I am happy to say it has been 3ys now of clear scans and I pray it to be that way forever. It has been a VERY long and rough road, but she is here today and loving life! My thoughts I leave you with are this. I felt very alone at times, looking back now I can see where Jesus was there and He carried me through all of this. He was there most importantly for Jessie although it was rough we always had the correct answer to fix the problem He provided her with the VERY BEST DOCTORS I will forever be thankful for the oncology team at Hershey Medical center and our WONDERFUL transplant team at AI. We love all of you!!! As for family and friends we couldn’t have done it with out all of you THANK YOU from the bottom of our hearts!! Caring bridge, wow the families we have met here, those we have rejoiced with and oh the ones we have shed so many tears for, we love you all to. It means so much to the kids to have you leave your thoughts and prayers in there guest books!!! May all the Glory of it ALL go to Our Lord and Savior for with out Him where would we be???

Thanks so much for reading my rambling.
Just wanted to include Jessie’s story for all who stop by!

Hugs!!

E-mail Author: candlys@mac.com
smilinjessie@aol.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.