On March 27, 2003, at age one year, Maddy was diagnosed with Acute Myeloid Leukemia (AML). This is a rare leukemia for children as it's usually found in older adults. When Maddy was diagnosed, the leukemia had infiltrated her liver, spleen and pancreas. After the first round of chemotherapy, all the organs returned to normal.
Since being diagnosed, Maddy has amazed us with her tenacious determination - she is a strong-willed child who is extremely happy despite the treatment she goes through. Maddy was in remission from September 2003 until December 2003 when she relapsed. She underwent a bone marrow transplant on February 24, 2004 at Duke University Hospital in Durham, North Carolina. After 5 1/2 months in North Carolina, Maddy went home and has been treated through the outpatient clinic through Kaiser Hospital in Fontana, California.
On December 7, 2004 Maddy relapsed once again and we were all devastated. Since she still had 80% donor cells, we are currently treating her with Mylotarg and have returned to Duke for DLI (Donor Lymphocyte Infusion) treatment.
After numerous tries with DLI the Leukemia continued to grow. The only thing that would give us hope for a cure was a second Transplant. On June 14, Maddy had her second Transplant in hopes that she would continue a long life here with us.
At the end of June we began to see problems arise from all the radiation and chemo she had to receive in preparation for transplant. On July 8, she was sent to PICU in Respitory Distress and put on a Ventilator for 10 days. As soon as she came off the vent she was transferred back to the Bone Marrow Unit to continue her recovery. After two days she was sent back to PICU again, but this time she was only on Bi-Pap.
While in PICU Maddy began having elevated liver enzymes and was diagnosed with VOD(for the second time) and was put on a medication to try and turn it around. After many days on Defibritide(side affects include possible bleeding) she had a Pulmonary Hemorrhage and had to be put on the Vent again. Maddy fought for a month-trying so hard to get better for her mommy, daddy, and brudder, but the treatment to heal her was just too much for her little body to handle.
Maddy left her mommy and daddy's arms and entered into eternity on August 31st, 2005. We know that she is with our Savior where there is no more pain and no more tears. We miss our sweet girl more than words can express. We look forward to the day when we meet again. Farewell till then sweet Moo!
If you would like to see more pictures of the family go to More Picture's of Maddy hereand we have tons of old and new photos posted.
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 has 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 - 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 - 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 - and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer so 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.
By Michael Crenlinsten
Still missing her every moment! Thank you for your continued prayers ans support. We are doing well. I will do a full update soon. I promise!
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