A special welcome to everyone to The Story Room......Hope and Courage. We meet every Monday evening, starting around 9:00 pm EST. One person posts his/her story, and the rest of us reply. The person "hosting" each week will stick around a bit to read and reply to your comments. The post will remain up all week for those who may not be with us on Monday evening, and comments will remain open, so feel free to leave a reply or message during the week. There are no rules in The Story Room. Please share whatever you want to share. Whether you have lost a child, are in the middle of the fight, or even if the child you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time), whether your loss is recent or many years ago, you can come to this diary and process your grieving in whatever way works for you. We can't solve each other's problems, but we can be a sounding board and a place of connection. If you would like to volunteer for a specific date, just leave a message for AJs Dad - everyone is welcome. This is the schedule for the upcoming weeks, let me know if you would like to contribute: October 27 - Sandy Barker November 3 -Christine November 10 - Lin November 17 – Sylvia Anderson
November 24 – Pam Wilson
December 1 - Open
December 8 - Open
THE LEGACY OF CHRISTIAN BARKER
CHRISTIAN'S BRUTAL 20 MONTH BATTLE
Christian Gordon Barker (CB) was born May 6, 1993. He was a quiet and beautiful boy with clear blue eyes and blond hair. He grew to be a very smart, responsible son who we are forever proud of. He achieved straight A's nearly every year and was very close to his siblings Garrett and Kendall. CB loved soccer, golf, baseball, Lego's, Playstation, Nintendo DS, Guitar Hero, video arcades like 'Dave and Busters', math (while in the hospital, he use to teach his math tutor how to do the problems), and drawing comics. His drawings are priceless to us now.
A week before he turned 13, I noticed some bruises on his body and thought he was getting a viral infection that was suppressing his immune system causing the bruises. It couldn't have been more because he was SO healthy with perfect attendance in school nearly every year. The evening of his 13th birthday (5/6/06) he wasn't feeling well and had a low grade temperature. He took a shower and was walking by me in his boxers and I gasped. His entire body had huge bruises on it the size of baseballs. I immediately thought "leukemia" and I felt sick. The next morning I took him to his doc and told them I wanted a CBC and full blood panel. At 4:00 that day, we were called and told to go to CHOC's (Children's Hospital Orange County) ER immediately for further testing. It was confirmed that Christian had Acute Lymphoblastic Leukemia and our lives were changed forever. Christian started strong chemo; a few weeks later we were given even worse news that his cancer had a cytogenetic involvement known as Hypodiploid ALL. We found out this rare (8-10 diagnoses per year in the US) form of ALL has a low survival rate and our only hope would be to have a bone marrow transplant (BMT). We were relieved when we found out our other 2 kids were identical matches for CB. They chose to use Garrett (G) because he was older. After extensive research for pediatric BMT facilities, we chose Seattle's Fred Hutch/Seattle Cancer Care Alliance for his treatment. We flew to Seattle on Garrett's 11th birthday 7/24/06. During the several months of Christian's treatment, I lived in Seattle with CB. My husband Gary and our kids Garrett and Kendall stayed in Cali and flew to Seattle every 2 weeks to visit. It was so hard having our family separated during such a hard time, but we thought is would be short term and would be better to keep our other kids in their normal school. Little did we know that our family would end up separated for 1-1/2 years.
Christian's BMT went as well as could be expected. He endured lots of total body irradiation, chemo, and the side effects of a BMT. Garrett was so happy to be able to give his bone marrow cells to his brother. G's surgery was over 2 hours and they went into his iliac crest over 200 times to retrieve 750 CC of bone marrow. What a hero!! Later that night the brothers were playing Playstation together. We had such high hopes this was the beginning of the end of Christian's cancer. During his 100 day testing they saw a few cancer cells back. We stayed another month and hoped for lots of GVL (graft vs. leukemia) and we got it. We flew back to California Christmas week 2006 praising God for a cancer-free son.
Unfortunately, only 2 months later I noticed petechiae (tiny red spots) on CB's feet and felt that sick feeling again, because I knew it was a sign of low platelets. I took him to our Oncologist and pleaded with her to tell me he didn't already relapse. A bone marrow aspirate was done that night confirming our worst fears. His cancer was back at 96% blast cells. Telling Christian this horrible news so soon after he had just returned from having a BMT was heart-wrenching.
The next several months of CB's journey was filled with extreme pain and sadness. All of the docs doubted if he could get into remission since his cancer was so aggressive it came back so soon after his BMT. He experienced severe bone pain, nausea, and coded from allergic reactions from strong trial chemo's. It is so hard to watch your child suffering so much and not be able to take the pain away. At one point, Gary and I went to the end of the hospital hall and prayed "Lord, if it is not your will to heal Christian, please take him now. He has gone through so much already, please don't make him suffer more." Well, he did get into remission and then I was notified they found a donor for another BMT. We knew CB was going to be healed!!
We were off to Seattle again on May 15, 2007 to prepare for BMT #2. He was so sick and weak. His second BMT was harder than the first, but he was always so heroic and took everything and anything the docs and nurses asked him to do without complaining. He was a quiet warrior on a mission to get healed! As we approached the 100 day testing, I knew he was cancer-free. I even told the docs he was. I was already thanking God for this miracle! We had family pictures done and we looked like a healthy family. After his testing, I received a phone call from our great doc telling me his cancer was back again. Our hearts sank and the sick feeling was back...I just screamed "NO!". We couldn't believe it! We were told our choices were to let him go or try eliminating the immunosuppressants hoping for GVL again, but knowing we were opening him up to possible Graft vs. Host Disease (GVHD) which is life-threatening.
We chose to discontinue the immuno meds and pray for GVL. This was done the beginning of September 2007. A week later he spiked a fever and was in the hospital. His GVHD was starting. Within a short period of time, it advanced aggressively. After only a week inpatient, he was vomiting several times per day, had liver, skin, and GI issues from the GVHD. He was put on high doses of Prednisone but it did nothing to help the GVHD. I researched and researched meds that may help him. We tried a few but they didn't work either. His GVHD got worse by the day, and after only a short time, he was vomiting and stooling large amounts of blood all day and night. It was horrific and terrifying for CB and myself. The vomiting/stooling of blood occurred for his last 3-4 months of his life 15-20 times per day. His hospital room looked like a crime scene daily. He wasn't able to eat anything for 4 months. Each day I would watch his labs and feel sick. I would pray for God to turn them around and help him not throw up blood. I truly still believed God was going to heal CB. His bilirubin reached 58 (normal is .1). His eyes and tears were yellow and his skin was orange, but we still thought he would turn around. Sometimes I was frustrated but CB kept his faith in God. Finally on Christmas day 2007, Christian coded and we were told his liver was failing. We signed DNR (do not resuscitate) papers on Christmas morning instead of opening gifts as a family. He never was able to get the strength to open his gifts, so they still sit unwrapped in a bin in our garage. I can't give them away, but can't see them either because my heart is torn apart. He hung on for 5 more days, and went to heaven just before midnight on 12/29/07 with our family by his side whispering in his ears: "I love you!" "You are our hero!" "See you in heaven baby!" "We are so proud of you!!" I will never forget watching Christian take his last breath at the age of 14 1/2. The thought of that still makes my heart break. Seeing Gary, Garrett, and Kendall burst out in tears makes my heart weep too. He died (cancer-free) from complications of GVHD. The dynamic of our family was forever changed that night.
THE NEXT PART OF THIS 'JOURNEY'
Saying 'goodbye' to the awesome staff at SCCA was hard. We were there for nearly 1-1/2 years and they had become like family to us. I can't convey the respect I have for all of the nurses, docs, PA's, Child Life, and other staff there. Some of them flew to Cali for Christian's Celebration of Life service.
We flew back home to California and had Christian's services. Over 1,000 people came to celebrate his life and honor the legacy he left. Hundreds of these people didn't know Christian or our family personally. They were there to honor CB and let us know how deeply he touched their lives. Many told me how their lives and faith are forever changed after seeing a 13-14 year-old child endure extreme circumstances and still trust God. Many did as we asked regarding being thankful for their children and family, hugging them more and not "sweating the small stuff."
We are now dealing with the after-effects of losing a child/sibling. It is very hard to lose a vital piece of your family and still go on in a 'normal' way. Sadness infiltrates our vacations, family outings, celebrations, and other events. We WANT to be happy, but the reality that we won't get to see Christian graduate, drive, get married, have kids, etc. is heartbreaking. I miss not only my sweet son Christian, but my friend Christian. We were together 24/7 for over 20 months and we became so close. We supplied strength for each other, and now I don't have that. Our family yearns for his tight "Christian hugs", his scent, his voice, his jokes, and his presence. NO child should have to suffer as Christian did and no family should have to endure the pain involved in losing a child/sibling. We are unbelievable sad for where he isn't (here) but praise God for where he is (in heaven, cancer-free). We know CB is celebrating with my dad and the many other people we know in heaven. God is telling him: "Well done, good and faithful servant...". We look forward to the day when we will get to be with him forever. Until then we will miss him in our lives and our hearts. For now we will try to balance our grieving with our lives here. It is a hard task with the heavy hearts we carry, but our other kids deserve a happy life too. We must find the happiness for them and to honor CB. That is what he would want.
This is the verse we wrote on Christian's website the night he died. I feel it applies to all of the heroic angels who fought like CB did and are angels now. "I have fought the good fight, I have finished the race, I have kept the faith. There is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day." 2 Timothy 4:7-8.
Even though our hearts are broken, we try to look at the MANY blessings God has given to our family during our journey. He has given us unbelievable support from our family, friends, school, little league, church, 'strangers', etc. He has introduced us to amazing families who also have kids with cancer...some of them have lost their child, some are still fighting, some are doing well. We thank God for these awesome families. I have grown to love many of them as if they are my family. We all 'get' each other. Words are not necessary to explain what is in our hearts..we all know. We are all trying to live 'happy' lives but also grieve our children. There is such comfort with each other and we are thankful for that. I love that others are looking at their kids in a new, loving light. A child's bad test score doesn't anger them as much, because they know we would love to have that be our biggest concern.
Most of all, I am thankful to God for giving us our sweet, awesome son Christian..even though we wish it was for much longer. He gave us so many wonderful memories that we will cherish forever. We are so honored to be his parents! We thank God for holding us all in His hands these past 2-1/2 years. It has been an emotional, physical, spiritual, and financial battle, but He will get us through it. I didn't always feel God there as I watched CB suffer, but I knew He was with us. He clearly held Christian close to Him because CB told me he knew God was taking care of him. That is a blessing!
NOT "WHY ME?", but "WHAT NOW?"
During Christian's treatment, we did a fund raiser through my husbands work (Cadence). We raised a lot of money and opened the "Christian Barker Research Fund." I met with some top cancer researchers (since I don't know cancer research) and we chose a promising pediatric cancer grant to fund. After getting back from Seattle I trained for a half-marathon and raised more funds for the grant in honor of all of the kids who are angels now. We plan to raise much more!
Just before Christian's service, I was asked from the Leukemia and Lymphoma Society to go to Washington DC with them to be an advocate for more Pediatric Cancer funding. Of course I said "Yes!" Soon after, the American Cancer Society asked me to go again, then CureSearch did. In less than 3 months, I went to DC 3 times. Going to the Senate and House offices, telling our story, and pleading with them to give our kids a chance to survive cancer feels healing and good. I feel like I am honoring the kids still fighting and the angels. I always start with "This is NOT about my family! I am here representing thousands of kids who are fighting or have fought cancer but are not cured because we don't have the funding to find cures. PLEASE give these kids a chance at life by giving the researchers more money to find cures." I know God wants me to do this for our kids. I never asked to go to DC, but the doors have opened for me to go. I have a medical background to convey the extensiveness of our kids treatments, STRONG passion in my heart for cancer kids, and a mouth that speaks clearly of our kids difficult journeys. I HAVE to use my abilities for our cancer kids!! I am becoming more and more involved in the pediatric cancer world of forming awareness and increasing funding for research. Everyone from LLS to PAC2 (Bob) to CureSearch knows to call me to be an advocate. I am a California Team Leader for CureSearch. I will be going back to DC again in 2009. I urge all of you who are affected by Childhood Cancer to join our efforts. We must band together in our efforts. The Childhood Cancer fight will take an army, and we need everyone!
A couple of months ago I was washing my son Garrett's soccer jacket with the name 'GOLD RUSH' on the back. I immediately though, "Wow! That is what we need to do for CC Awareness! Get gold ribbons everywhere so people know CC is here, kids are dying from it, and we need $$ and awareness!" So I am now spreading the 'GOLD RUSH' word to everyone via websites, stickers, car magnets, and voices. Let's get the awareness going!
Christian heroically endured 20 months of aggressive treatment, tons of extremely strong chemo, 2 Bone Marrow Transplants, 3 relapses, 16+ months of hospital inpatient time, hemorrhaging for 4 months, 1-1/2 years of separation from our family, extreme pain and suffering, etc. He is forever our hero and his legacy is one of unconditional faithfulness in God, bravery, courage, and determination. He always showed respect to his doctors and nurses too. It is so difficult to see someone you love more than life battle for his life! As I reflect on the extreme pain and circumstances Christian endured, I am again in awe of his courage and faithfulness. We are so proud of the many wonderful character traits he lived out each day. No one will ever inspire me more than my heroic child has. It is a great honor for me to be Christian's mom. He is an inspiration to us and many others as well.
Our hearts yearn for him and we know they will until we are united with him in Heaven. For now, we will look for him in our lives and honor him as we fight to eradicate childhood cancer. We pray for God to comfort our hearts and continue to USE us to fight for these heroic cancer kids! The deserve a cure and a chance at life!!
(((Hugs to you all))),