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Angel Ethan Zachary Hoffman 
Our Precious Ethan April 2005
(before his bone marrow transplant)
Ethan earned his wings on Sunday October 7, 2007, 6:30 a.m.
October 29, 1998 - October 7, 2007
ETHAN means 'STRONG'
ZACHARY means 'GOD HAS REMEMBERED'
We miss you our precious child! Love Mommy & Daddy!
WELCOME AND THANK YOU FOR VISITNG ETHAN'S PAGE
PLEASE LET US KNOW YOU WERE VISITNG US BY SIGNING ETHAN'S GUESTBOOK.
We appreciate your comments and support.
Please scroll way down past Ethan's story and history for most recent update
Please see past journal entries for Ethan's progression from diagnosis in October 2003, this paged was started on 3/27/04
You may also view more pictures of Ethan at:
http:www.carepages.com
page name:ETHANZACHARY
ETHAN'S STORY:
ETHAN was two years POST Bone Marrow Transplant in April 2007, he was LEUKEMIA FREE, NO ABNORMAL CELLS AND HAD 100 PERCENT DONOR CELLS.Thank you Jesus for giving our son life for the 2nd time! Thank you to our Donor Jutta for giving us 2-1/2 more years with our son!
CONDITIONS April 2005 to October 2007:
Ethan had chronic graft versus host (GVH) that appeared within a month or two after transplant. His GVH has affected his skin, mouth and GI.Graft vs. Host is when the donor (Graft) cells attack the Host (Ethan's) cells and see them as foreign, similar to a white cell attacking a germ. GVH of the skin causes redness and dry scaly peeling skin and, dark patches and spots in some cases. In the mouth it causes sores (like canker) and inflamed gums, making it hard to eat. In the GI it can cause diarrhea or very loose to loose stools.
There is no way of knowing if and when it will stop. It just has to burn itself out! The cells have to calm down in their new host. We continued to pray that it would so that he can get off of immune suppresing medications, cyclosporine, and cell cept.
Ethan's hemoglobin and platelet counts had been in the normal range since shortly after his transplant.
He received unrelated donor bone marrow from a 39 year old female from Germany. God Bless this wonderful woman. On May 9th 2005 Ethan's donor cells are grafted at 100 percent and continued to be 100 percent with no abnormal cells for the rest of his life. Praise God!
ETHAN'S HISTORY:
At three years old (December 2002) Ethan was diagnosed w/ Chronic Thrombocytopenia (Low Platelets). Jan'03 signs of Myelodysplasia in the bone marrow. We are told that it may develop into Leukemia.
Diagnosed with JMML on 27 Oct'2003, he was 5 years old. Juvenile Myelomonocytic Leukemia is rare, less than 1% of childhood leukemia's diagnosed. It is hard to treat & has a poor prognosis & cure rate. For more informaiton about JMML please visit: http://www.jmmlfoundation.org.
CHEMO HISTGORY:
Nov'03 Gleevic. Dec'03 & Jan'04 Two rounds of Fludarabine w/AraC. March'04 DOCTER DOCTER (4 Drugs & a steroid)no results. May'04 2 rounds Clofarabine. June'04 Phase1 Decitabine w/Valproic Acid. FINALLY his blasts down to 2% (normal range!)but this was short lived. Aug'04 Cladrabine w/no results.
Ethan's large spleen was removed August 30,2004, A VERY RISKY SURGERY as he had only 1 thousand platelets! Sep'04 Mylotarg, w/no results. A Naturopathic in Conroe started him on herbs & vitamins in late Sept'04. At this time Ethan had 75% circulating cancer blast cells in his. Oct 21 he had zero cancer cells in his. Nov'04 we were told that there was no other chemo to get marrow blasts down and a transplant would not be done.
THE TURNING POINT:
Jan'05 Texas Children's Hospital will do a transplant! We cut back on the vitamins at this time & in Feb'05 leukemia cells found in lymph nodes,lung tissue sample & the skin lesions on his abdomen. Feb'05 Ara-C injections & Hydrea to control the leukemia & get white cells down for transplant. Feb 28th 1st.Round of Vidaza. March 21st 2nd round Vidaza. We continued nutrition to build him up for transplant. April 17, 2005 Ethan starts 7 days of chemo prior to his 4/25/05 transplant of non-related donor cells. God bless our donor Juta!
IN LOVING MEMORY of our niece and Ethan's cousin, Bianca Jade Miller, they are together in HEAVEN playing!
Bianca Jade Miller
April 12, 1997 - June 8, 2005
Our little "JuJu Bee"
Angel's Jade and Ethan June 2001 at Disneyland
WE MISS both of YOU!
(please see her beautiful picture in Ethan's photos)
Journal
Tuesday, July 15, 2008 12:32 AM CDT It has been awhile since we have updated. July 7th was the 9 month anniversary of Ethan’s passing. It is hard to believe that in just three short months it will be a year since he passed. I expect it to be a very hard day for us. We will be taking that day off of work. His 10 th. Birthday is three weeks later on October 29 th. Loosing a child can be compared to loosing a limb; you always feel it (them) even tough you learn to live with out it (them). All we can do now as his parents is never forget him. Of course we won’t and of course we LOVE him. We also are meticulous about the care of his grave. I go to the hobby stores to buy cute things to decorate it, go buy and dump out the rain water from the vase, replace faded silk flowers and clean the memorial marker. It stinks when you can’t cook their favorite meal, spend quality time or just hear their voice. What we would do to be able to do this for our beloved son.
Ethan is our life, not was, but is, he still is our life. Not a day, not a moment passes when we do not think of him. Everything reminds us of him. The color orange is his favorite, so anything we see in orange reminds us of him. His favorite places to eat remind us of him. We have pictures of him all over the house; we always did and always will. His Vans (shoes) and Crocs are still on the stairway. His denim beanbag is with his name embroidered on it remains in the living room with Chuckie sitting in it along with various stuffed toys. A basket of the last load of laundry I washed and folded for him still remains in my bedroom. I still sleep with my very small piece of his favorite blanket “blankie” as he called it. I have one last worn shirt that was not washed, neatly folded and it stays on my night table, sometimes I smell it and hug it.
We managed to get thru Mother’s day. We spent awhile at the cemetery with Ethan after going out to eat one of his favorite foods, Mexican. It was a beautiful cool spring afternoon. We just sat for hours there. We also got thru Father’s day as well and had another favorite, barbeque. The Forth of July was another favorite holiday and the next day is his dad’s birthday. Ethan loves fireworks and of course a birthday celebration. Happy Birthday honey!
Ethan’s Great Grandmother Mary Vaughn Newton 87 years old, joined him in heaven on July 2 nd. I am sure he was there waiting for her and held her hand as she walked in. She did not know about Ethan’s passing as she had Alzheimer’s and we did not want to upset her. I am sure she was quite surprised to see Ethan there. She is so lucky to be with him right now. They did not get to see each other as much in the last four years with Ethan’s hospitalizations as well as hers. She always asked about “the baby” as she called him and he always asked how “Grandma” was doing.
Thank you for checking in on us. Ethan's loving parents:
Sharon & Henry Hoffman
I got this from my JMML Rainbows support group of parents that have lost their child:
The Gap
by Michael Crenlinsten
The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact, can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole as been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain ½ a life sentence.
Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap ½ those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.
We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience ½ and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer painful to be normal. We do not know who we will be at that point or who will still be with us.
We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap
Here is a beautiful poem I found:
Dear Mommy (and Daddy)
When you wonder the meaning of life and love
Know that I am with you.
Close your eyes and feel me kissing you
In the gentle breeze across your cheek.
When you begin to doubt
that you shall ever see me again,
Quiet your mind and hear me.
I am in the whisper of the heavens
Speaking of your love.
When you lose your identity,
When you question who you are,
and where you are going,
Open your heart and see me.
I am the twinkle in the stars
smiling down upon you,
Lighting the path for your journey.
When you awaken each morning
not remembering your dreams,
But feeling content and serene
Know that I am with you
Filling your nights with thoughts of me.
When you linger in the remnant pain,
Wholeness seeming so unfamiliar,
Think of me.
Know that I am with you
Touching you through shared tears
of a gentle friend
Easing the pain .
As the sunrise illuminates the desert sky
In that breathtaking brilliance,
awaken your spirit.
Think of our time together,
all too brief, but ever brilliant.
When you are certain of us together,
When you are certain of your destiny,
Know that God created that moment
in time, just for us.
I am with you always.
(c) 1997 by Joanne Cacciatore,
Read Journal History
Hospital Information: Patient Room: Heaven Sweet Heaven Texas Children's Hospital
6621 Fannin Street
Houston, TX 77030
Home: 936-321-9071
Links: http://www.skyalbum.com/showAlbum/115066 Ethan's Slideshow/s
http://secure.smilebox.com/ecom/openTheBox?sendevent=4d546b794e54517a4e58777a4f4441774d7a4d340d0a&sb=1 Ethan's Christmas video
http://www.hisgracefoundation.org VISIT HIS GRACE FOUNDATION THEY ARE A WONDERFUL ORGANIZATION, there is also a link from thier site to National Bone Marrow Foundation for any wishing to be a Donor!
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