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Hannah's Story



Hi, my name is Hannah Glenn and this is my story of the ongoing journey to beat a rare childhood cancer. I was diagnosed with Neuroblastoma stage 1V on June 8, 2002 at 22 months of age. It was our 9/11. I have completed 7 rounds of chemo, 2 of which was high dose with two stem cell transplants, surgery with tumor and left kidney removal,6 sessions of full body radiation with an additional 12 rounds of radiation to the original tumor site,Accutane and participated in a Vaccine trial study.
Please stand in agreement with us in prayer to the Almighty Lord Jesus Christ that Hannah is going to beat this disease and none of the treatment that she has received will affect her in the future. Pray with us that Hannah will be restored. Please use these updates to stand with us in prayer and faith on God's promises in His Word. Prayer has comforted us in sorrow and will help strengthen us for the journey ahead. Romans 12:12 says Be joyful in hope, patient in affliction, and faithful in prayer. Thank you and may God bless you and your family. Please sign our guest book.

Blessings,

Tim, Brenda, Jordan and Hannah

Journal

Saturday, April 7, 2007 10:05 AM CDT

JUNE 2007, HANNAH WILL BE A 5 YEAR EVENT FREE SURVIVOR!

It has been a long, long time since our last update. That’s the best sign that things have been good. We feel so very blessed.

Hannah is doing great. She enjoys participating in dance classes, gymnastics, swimming lessons and church activities. However, the simple and sweet pleasures of life are what she enjoys the most. Spending time with B and Paw Paw, visits from her Aunt Debbie, Uncle Mike and Aunt Darlene, blowing bubbles and riding bicycles with Lora, Brady, and Sam, her neighbors. Her Favorite playmate is her big sister, Jordan. Even though they do bicker with each other, Jordan is very loving and protective of Hannah. They have an indescribable bond.

Hannah is in her second year at The Woodlands Christian Academy. She really likes reading and math. Her teachers, Mrs. Seekatz (K) and Mrs. Smith (prefirst) are truly angels on earth. They have been exceptional on every front and eager to meet any need that Hannah may have. We are so thankful for their compassion and support.

In July, we will contact her oncologist to begin appointments with the long term, follow up team. We will learn more about future late effects that could possibly affect Hannah. Currently, her late effects are mild and common in children who have had harsh treatment for Neuroblastoma IV. She has high frequency hearing loss, speech difficulties, weak malformed teeth, growth hormone deficiency and thyroid issues. Hannah has been fitted with hearing aids and is progressing very well with an angel on earth named Jennifer Cole, who is a speech pathologist. What seems to be our biggest issue to date is Hannah’s teeth. She has another angel on earth as her dentist, Dr. Heather Feray-Bohan. Knowing Hannah’s background, she referred us to a specialist to discuss all future treatment plans. From what we understand, her roots have been severely damaged by the toxic chemo and radiation she received during treatment. Her few permanent teeth are very weak and will eventually fall out. At this time there is no treatment to strengthen her roots. After hearing that, we contemplated about dentures for Hannah. Once again, the love and compassion of Dr. Heather and her assistant Janna (another angel on earth) contacted us with another referral. Janna’s love for Hannah led her to another conversation with Dr. Heather about the possible psychological effects of having dentures. So they led us to another specialist. His name is Dr. Luthonsky – Prothesdontist (no web site). We will contact him during the summer months to discuss implants for Hannah. We will keep you informed on a treatment plan in future updates. Also, Hannah takes Synthroid daily for her thyroid issues.

We can honestly say that there has not been a single day since Hannah’s diagnosis, that the word relapse hasn’t found a way to creep into our thoughts. It’s not about “keeping positive” or “she looks great” or “you can’t think that way”. It’s about the harsh reality and statistics that some children with Neuroblastoma IV do relapse. It may happen two, five or ten years out of treatment and there is no way of knowing who will. Please say a prayer for the families that are facing relapse or the premature death of their precious children. Until there is a cure, we will continue to pry the cold hands of fear from our hearts daily.

And with this, we will end this portion of our update. Thank you for your endless compassion, your love, and your prayers thru the years.

With Love, Hope and Faith,
Tim, Brenda, Jordan and Hannah

(CONTINUED)

HOPE

A key ingredient for coping and growing through adversity is the belief that there is always hope.

When Hannah was first diagnosed, we didn’t know about CaringBridge which hosts the websites of other families fighting Neuroblastoma IV and other various diseases and cancers. We searched for “HOPE” through the fog. We were introduced to a family at Texas Childrens Hospital whose daughter, Lexy was in the same fight for her life with Neuroblastoma IV. They became our first glimmer of “HOPE” that we would follow. Lexy’s momma, Dawn, said five words to us. “YOU CAN GET THROUGH THIS”. Those five words were our life jackets during those first stages of Hannah’s diagnosis. AND WE DID. Pieces of our hearts were buried the day we attended Lexy’s funeral. She was a warrior princess who lost her beautiful life to Neuroblastoma IV. We were so fortunate to have known Lexy. We will always be grateful to her family.

After Lexy’s death, we didn’t have anyone (on earth, at least) for a long time who we felt understood what we were facing with our child. We longed to know other parents whom had walked in similar shoes and could relate to our anxieties. During our stay at Texas Children’s Hospital, we met Abi who was diagnosed with Neuroblastoma IV before Hannah, but shortly passed away after we met. Erin and Angel (no website) were diagnosed with Neuroblastoma IV after Hannah. Although we became very close, we were on different paths and we frantically searched for someone whose child made it through treatment and survived. That’s when someone introduced us to CaringBridge. We started our own web page for Hannah and began journaling. Having Neuroblastoma IV families to reference to is like having an empathetic and wise friend at our sides. Even though we usually never meet, we all know the heartache of watching our children fight for their life in a bloody war called cancer.

We pray someday Hannah’s story will shed a little “HOPE” in the darkest days for a family fighting Neuroblastoma IV.

After listening to the Neuroblastoma Conference Video we were inspired to write our feelings on the emotional feelings after completing treatment. One of the speakers on the video mentioned that there has not been a lot of research performed relating to the issues of survival ship and how it affects a family. So we thought the following would help the research begin.

As described in our induction of this webpage, June 8, 2002, was our personal 9/11. Like the Manhattan skyline, our life will never be the same. Our life as we knew it crumbled, leaving the billowing smoke that continues to leave a residue falling on our lives. When your child has been diagnosed with Neuroblastoma IV, it is more than surviving the horrific treatment. Parents must deal with the emotional, social, psychological (just to name a few) fallout. Neuroblastoma IV has taught us about the fragility of these precious children’s lives.

NO MORE SCANS
December 2006, Hannah’s brilliant oncologist, Dr. Heidi Russell said, “NO MORE SCANS!” The euphoria and sense of rebirth lasted a few minutes. Then the reality of not being scanned or watched opened a new door of fear of the unknown and it settled deep within the inner part of our souls. We continue to have contact with Hannah’s oncologist via email so we feel as though she continues to” hold our hands.” We will see her once a year for an office visit.

EMOTIONAL ISSUES AFTER COMPLETING TREATMENT
The period after treatment poses its own unique issues. This cancer journey does not end with the last scheduled set of scans. Completing your treatment/road map and the decreased contact with your health care team can be a source of anxiety. Traumatic as treatment may have been, we were reassured by knowing that while Hannah was receiving it, we were doing something active to fight the cancer. No matter how much we disliked the treatments and the scans, it was reassuring to have someone to check Hannah frequently. Being told there are no more scans scheduled can be unsettling. Now that the treatment is over, we acknowledge and experience the fear of our brush with death. Completion of treatment is an emotional time, with anxiety, sadness, anger and other emotions all stirred up. A brush with mortality can make everything around you look and feel different. We feel that we are living in a never-never land of “wait and see.” We become fearful of everything. The fear of relapse is a daily, debilitating fear.

POSTTREATMENT ANXIETY
The completion of treatment is accompanied by many different, seemingly contradictory feelings. Fear of relapse can destroy your quality of life even when things are going well. Many people expect all the anxiety to disappear after treatment is over. The fact is, you become more anxious after treatment ends. It is easier to believe that your child will never get cancer than to believe that they will never relapse. Fear of relapse is powerful. Neuroblastoma IV statistics can cause you to feel increased fear of relapse. The sense of being totally overwhelmed and out of control. There is free-floating anxiety that something else may happen to Hannah. After all, the disaster happened once; you feel that it can happen again. The fear of relapse is very intense because there is currently no cure for relapsed Neuroblastoma.

DEALING WITH THE FUTURE
Control is an illusion. Subconsciously, we all build shields to feel safe. These illusionary shields allow us to function effectively. Major trauma such as your child being diagnosed with Neuroblastoma IV and a personal brush with a life threatening cancer breaks down your shield. You are forever different and your shield is never as solid. Having walked down the road of Neuroblastoma IV made our future seem less certain. Picturing the future elicits enormous anxiety, anger and sadness because you fear that your child may not get to experience it. Projecting the future is a setup for allowing a glimpse of all possible future outcomes, including the fear of relapse. Planning for the future means having confidence that the plans will come to fruition. We lost a lot when Hannah was diagnosed with Neuroblastoma IV. You feel vulnerable. You want to protect yourself from avoidable loss and pain. We feel anxious when we start to make plans, because we you do not want to loose anymore. Worrying about your past or your future can poison your present.

IS IT BACK?
Relapse, one word, but our greatest fear. It is difficult for people outside the Neuroblastoma world to understand why normal childhood sicknesses could be warning signs that need early intervention. Relapse can come up totally unexpected and because we are not being treated or scanned, it can incapacitate you when problems arise. Stomach aches, leg pain, fevers, bruises, falling, not eating, sleeping more than usual, and bumps just to name a few, paralyzes us for the moment. Parents outside the world of Neuroblastoma could look at these symptoms and say, “ Oh, your stomach hurts because you ate too much” or “Your leg pain is from growing pains” or “You have a fever because you are coming down with something” or “Those bruises are from playing too hard” or “Your falling because your not watching where you are going” or “You’ll eat when your hungry” or “You need to get more sleep at night” or “You must have bumped your head while you were playing.” Knowing Neuroblastoma IV, these symptoms are unwelcome reminders of this evil beast we all know too well. We believe all Neuroblastoma IV parents are entitled to be a bit of a hypochondriac. Parents whose child has never experienced a life threatening disease generally cannot picture their child’s end, which makes it easier to deny that there is one. Having a child diagnosed with Neuroblastoma IV, the possible cause of death now has a name and a face.

SURVIVORS GUILT
The thought “Why has Hannah survived 5 years and others who have fought as hard didn’t?” This causes survivors guilt. We feel a rush of gratitude that Hannah has made it this far, and then guilty that we are happy for Hannah when others have relapsed or died. Hearing of another precious child’s death from Neuroblastoma IV forces you to remember your own child’s battle. It is difficult to function, let alone enjoy life, if you are constantly thinking about your child’s mortality. Our lives, the lives of parents of children with Neuroblastoma IV, are in perpetual state of unrest. Our security is only as good as today; tomorrow might behold an entirely different outlook. . It’s unimaginable to go to a child’s funeral. To see a casket so small, the soulful grief of the parents, the destruction of happiness. Then to know that this will not be the last premature funeral you will attend or hear about in the world of Neuroblastoma. To pray so selfishly that your child will never be in that all too small casket. Lord, may we never travel that road.



Please pray for the family of Penelope.
Penelope




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Hospital Information:

Texas Childrens
6621 Fannin St.
Houston,Tx 77030-2399
832-824-1000

Links:

http://www.woodlandplace.info   Woodland Place Baptist Church
http://www.geocities.com/neuroblastoma_awareness   Neuroblastoma Warriors and Angels
http://www.bethelipc.org   Bethel Ind Pres.


 
 

E-mail Author: wsu@wt.net

 
 

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