^^Angel^^ Abigail O. - Quilt Finished in 2002

Born: June 14, 1995 - Passed Away: March 12, 2004

Illness: Acute Myelogenous Luekemia (AML) - relapsed November 27, 2001 - Relapsed fall 2003

A Thank You From Abigail's Family!

Ohhhhhhhhh... what a gorgeous quilt!  Abby was so excited that she ran around the house screaming, "My Quilt It's here.  I can't believe my eyes."  Please thank all of the people who worked so hard on it.  It is an heirloom that Abby will cherish.  It is so beautiful.  During such a dark, frightening time in her life, she has this special quilt to hold on to.  A quilt so lovely and comforting and she will always have it with her.  She told me she thinks she'd rather put the quilt on the wall than her bed.  She saw some of the quilts on the walls at the Ronald McDonald house in Houston and loved that idea.  We'll see.  Thank you for the lovely quilt for my little Abby. 

Love Always,

Suzanne and Abigail O.

Abby's Story

written by mom Suzanne

Abigail Anne Rose (we call her Abby) was brought into this world with love on June 14th, 1995. An only child to older parents (40ish isn't old is it?), she grew up with a close circle of friends she met while in Gymboree and with the loving and attentive care from her mommy and daddy. She was just getting ready to begin another school year, after 2 years of preschool, looking forward to meeting and playing with other children, when on August 15th 2000; she was diagnosed with Acute Myelogenous Leukemia (AML) with Central Nervous System. It was devastating! AML is an aggressive bone marrow cancer rarely seen in children. Her first hospital stay was over 2 weeks long as they tried to stabilize her blood chemistry. She required huge amount of platelets and red blood. Bert and I camped out in the hospital room, never leaving her alone. We never left her alone the whole 3½ year battle we had up ahead.

For the past 6 months, Abigail's pediatrician had grossly misdiagnosed her. For her recurrent bouts of infections, he just kept symptomatically treating her with antibiotics. I desperately kept bringing her back with one infection after another, telling him something was wrong. He never did a blood test, which would have revealed the leukemic blasts in her blood. She was having trouble swallowing and her speech was affected.

We found out she had enlarged tonsils through a speech evaluator from the Chesapeake school system, not the pediatrician. Unsatisfied with the medical treatment by her pediatrician, we brought Abigail to an Ear, Nose, and Throat (ENT) specialist. He also never did a blood test. He led us to believe all her problems would be cured once she had surgery to remove her tonsils and adenoids. The tonsillectomy and adenoidectomy surgery was performed on the July 28th, 2000. She bled a lot during the surgery. She had a terrible time healing and endured a tremendous weight loss of 14 lbs. (35% of her original body weight at the time).

I took her back to the ENT specialist and he checked her vitals and sent us home saying she was a slow healer. Two weeks post op, Abigail developed an eye infection that was so severely inflamed, and her eye was bruised and sealed shut. I brought her back to the pediatrician and he checked for corneal abrasion and sent us home instructing us to use warm compresses on the eye.

The following morning her eye was worse. Unsatisfied, I brought her back to the pediatrician's office requesting a different doctor. The other pediatrician took one look at her, reviewed her medical history and immediately ordered a blood test to be done STAT at the local hospital. They called for one parent to go to the hospital to discuss the test results. Bert went and I stayed at home with Abigail, trying to keep Abigail busy while trying not to cry. The symptoms of leukemia had all been there but Bert and I didn't know them. The blood test confirmed it. Abigail had a raging case of leukemia. The signs had all been there: heavy bleeding during surgery, slow healing post surgery, fatigue and listlessness, the paleness of her skin, bruising easily, bleeding gums, leg and knee pains, recurrent infections and the unusual color of the bruising around her swollen eye.

Acute Myelogenous Leukemia (AML) has a 40% cure rate for long-term survival (more than 5 years). It is a tough malignancy to deal with and the treatment is brutal. It is normally seen in adults and not in children. The statistics published by the Leukemia Society for the incidence of AML in children 5 years old is 1 case in 100,000. Extremely rare. It's not inherited but acquired. They don't know what causes it. To our knowledge, Abby has never been exposed to "weird" stuff so we remain baffled to this day as to what might have triggered the onset of her leukemia.

Abigail was treated at the Portsmouth Naval Hospital in Portsmouth, VA. The treatment to bring Abigail's cancer into remission lasted over 6 months with a 5-day chemotherapy treatment once a month. During each treatment she was required to stay in the hospital during the treatment and after treatment until her blood counts reach a certain level. Additionally, she had four spinal chemotherapy treatments to arrest leukemic cells found in her central nervous system (spinal fluid). The regimen was grueling but she bravely fought for her life.

Throughout Abigail's treatment, she continuously had to be transfused with red blood cells and platelets. Abigail achieved remission on September 28th, 2000 after her first round of chemotherapy. During the 6 months of chemotherapy, Abigail cyclically did not have white blood cells to fight infections, a condition called Neutropenia. So we had to be careful and pay extreme attention to blood counts. This meant little to no exposure to the outside world while undergoing treatments.

Her days in between treatments were spent at home with me. She received homebound Kindergarten through the school system. We had a visiting in-home nurse that drew blood (twice a week usually) for the hospital using Abby's central venous catheter. The central venous catheter was surgically implanted in her chest on day three of her initial hospitalization. This made blood draws painless because she didn't have to get stuck with needles all the time. My sister Karen sewed pockets on the inside of Abigail shirts and dresses so she could tuck her central line into them.

Early on in Abigail's illness, we investigated the prospects of a possible Bone Marrow Transplant to increase Abigail's chances for long-term survival. Since Abigail doesn't have any siblings, it is very difficult to find a donor match for a Bone Marrow Transplant. Without a good match, a Bone Marrow Transplant can be very risky and can lead to death. Miraculously, after typing Bert & I, we found out that I was a 5/6 Haplotype Antigen match. This made it possible for me to be her Bone Marrow Donor if she relapsed.

We traveled to Texas and got second opinions about when to do a transplant from two hospitals, Texas Children's Hospital (TCH) in Houston, TX being one of them. The doctor at Texas Children's advised that because of the high risk of complications during a Bone Marrow Transplant, we should wait and see if Abigail relapsed or was one of the lucky 40% that stayed in remission. We agreed since Bone Marrow transplantation is a difficult and painful process with very undetermined outcomes. We decided we would rather have her experience some carefree days of no treatment instead of more pain, suffering and isolation. Time for her to just be a kid, even if we end up losing her later.

Every passing day that she did well, brought us hope and endless joy. But each day brought an underlying anxiety, as Bert and I were very aware of the mortality of it all. We prayed for more of the good days.

On December 10th, 2000, Abigail got an infection that almost killed her. She got a fever and was admitted to Portsmouth Naval hospital. Her temperature kept rising and infection spread throughout her body because she had so few white cells to fight with because of the chemotherapy. She began laboring terribly just to breathe and her situation turned grave very quickly. She became septic (systemic blood poisoning) and was transferred to the Pediatric Intensive Care Unit (PICU) and placed on a ventilator. There she fought for her life.

Bert and I stayed by her side, talking to her, reading to her and tenderly touching her pretty little face and hands. We prayed and cried and waited. On December 23rd, 2000 Abigail miraculously pulled out of septic shock and began to improve. The doctors slowly weaned her off the ventilator, the paralytic and some of the narcotics. She "woke up" on Christmas day and we took her for a ride in a wagon down the PICU corridor with IV pole in tow! This was the best Christmas gift God could have given us.

They had to proceed with her chemo ASAP to ensure there was no relapse due to the slipping of the AML protocol's time frame. Abigail still couldn't hold down food and had to be fed with a feeding tube that went from her nose to her stomach. She also received nutrition through her IV as well. She couldn't stand up without help nor walk because she was too weak. She was completely weaned off of the sedatives and painkillers she received in the PICU (pediatric ICU) using methadone and Valium. Abigail was moved from the PICU to the ward and remained in the hospital for two more weeks. She recovered fully over time and completed chemotherapy on January 7th, 2001.

In May 2001, Abigail was able to go on her Make-A-Wish trip to Disney World, FL. We stayed at Give Kids the World, a resort available to the Make-A-Wish kids. We had a delightful time watching our little girl jump in and out of her wheel chair to experience the wonders of Disney World. We thanked God for letting her stay with us and have this enchanting time together.

She was strong enough and well enough to go to public school and attend Kindergarten. The homebound Kindergarten the previous year had not been enough for her to go to first grade. Bert and I agreed she needed to take it slowly and get used to the classroom. She took the bus to school and sat with her best friend Madison everyday. They played after school and were inseparable. Abigail was doing so well.

But our world came crashing down on us again when her Oncologist informed us on November 2nd, 2001 that Abigail had relapsed. Abigail needed a Bone Marrow Transplant.

We traveled to Houston, TX to Texas Children's Hospital (TCH) and on December 21st, 2001 Abigail had her Bone Marrow Transplant with me as the donor. She had seizures during the pre-transplant chemotherapy and was admitted to the Pediatric Intensive Care Unit (PICU) until she was stabilized. After the bone marrow transplant Abigail was sick to her stomach constantly. She had to have her gall bladder removed on February 14th, 2002 a very risky procedure because her new marrow was not mature yet. An infection could have killed her.

By the grace of God, there were no complications during the surgery and Abigail got to go home to Virginia on April 5th, 2002. She received homebound Kindergarten through the school system once again.

After indications of her bone marrow graft failing, Abigail and I returned to TCH in Houston to give Abigail's marrow a boost using my stem cells. Bert was unable to accompany us because of his job. On June 25th, 2002 Abigail had a Stem Cell Transplant using my stem cells. During this trip, when we didn't have to be in-patient at the hospital, we stayed at the Ronald MacDonald house and made daily trips to the hospital. We went home after about 6 weeks. We prayed that this boost would help the donor marrow to grow.

More bad news. We had to return once again to TCH in Houston for another Stem Cell Transplant on September 5th, 2002 to aggressively treat yet more indications of graft failure and reestablish her donor marrow. These treatments included chemotherapy. She received homebound first grade through the school system once again. She was too fragile and very susceptible to infection. She was upset but we all made the best of it.

Abigail flourished grew stronger and healthier. She had a great summer playing with Madison and the other neighborhood kids. She was well enough go to Second Grade. She joined Brownies. Bert and I were optimistic that she was going to be okay. It had been almost one full year!

In November 2003, Abigail's Oncologist informed us that once again she had developed graft failure. This time the doctor at TCH in Houston advised us that our only hope was to do another full Bone Marrow Transplant using a different donor. We left for TCH in Houston for another full Bone Marrow Transplant with a Matched Unrelated Donor on December 28th, 2003. We celebrated Christmas at home. On January 23rd, 2004 Abigail received her new marrow.

Initially she was doing well after recovering from the radiation sickness. In early February 2004, she developed a fever and was admitted to the bone marrow transplant unit. Her condition got worse and they began treating her for Graft vs. Host Disease (GVHD), a very serious condition when the donor cells relentlessly attack and destroy the cells of the host, Abigail. Using steroids and immunosuppressants the GVHD got under control.

Unfortunately Abigail got an infection that destroyed her liver and led to liver failure. They did a liver biopsy to try to determine what type of infection she had and if it were viral or bacterial.

She was transferred to the PICU as her condition worsened. She went into respiratory failure and was put on a ventilator. The plan was to keep her alive in hope that the infection would perhaps run its course or respond to the different wide spectrum antibiotics they were giving her. The hope was that her liver would regenerate.

Her kidneys failed and she was put on a dialysis machine. She developed so many complications. Her liver finally took a turn for the worst. Her breathing was very difficult with the ventilator at high pressures just to maintain her oxygen saturations. Blood pressure meds were maximized for her to just maintain her blood pressure. Abigail's pupils dilated and were unresponsive. They did a CT scan but found nothing unusual. Multiple organ failure is hard to overcome but we always had hope and allowed her the chance, even in the end.

It is never easy to watch your child die in front of you but she died so very peacefully that we were relieved that her suffering had finally ended. Her ventilator continued to do its work but her blood pressure dropped until her heart stopped her life here on earth.

The Lord has mercifully decided. Abigail Anne Rose O. passed into the hands of the Lord at 5:40 p.m. CST on Friday, March 12th, 2004. She left us very peacefully as the loving hands of Mommy Suzanne, Daddy Bert, Uncle Alfredo, Auntie Carmen and Auntie Brandy were upon her. She passed with dignity and grace and so calmly. Father Rey, who had blessed her Saint Christopher medallion weeks earlier in the BMT Unit, delivered her last rites before she passed.

She is now finally cancer and pain free, smiling, laughing and dancing in Heaven. We take solace in that. She is now in the fields of the Lord, playing with her beloved dogs that predeceased her within the last three months, Butchie and Lulu. Bert and I always believed that Abigail's dogs had known somehow she was going to die and went to pave the way for her.

This has been a very long fight for our little girl. She has had a very good and loving life though, surrounded by love from both family and friends. She passed in that embrace. She never liked to be alone and she never was, always having someone by her side throughout. I feel blessed to have been her mother. I am thankful to have been part of her life. Even if I knew ahead of time that Abigail was going to die at age 8½, I'd have her all over again.

We had a memorial service in Houston at the Hospital for all our friends and caregivers before we left to return to VA. We then had a funeral followed by a reception on March 24th, 2004. She was laid to rest at Chesapeake Memorial Gardens on March 25th, 2004, on my father's 81st birthday.

So we stand in testament of our terribly missed child ... grieving parents. Such a short but full life. A life full of love and blessings that we continue to reap. Yes, we know our beloved little special angel is at peace and finally cancer and pain free.

Angel Abigail, your Dad and I miss you and we hold you forever in our hearts and mind and soul. Please watch over and pray for us and we'll see you in Heaven in a twinkling of an eye!

Love,

Mommy & Daddy