Today was one of those days. It is difficult to explain, but I will try. Physically I feel ok, not great, but ok. The fluid, I can tell is increasing quickly as I am very short of breath. What a difference one day can make. It is easier for me to sit up than it is for me to lie down, so I wrapped presents most of the day, which is better than most years as I am frantically stuffing bags the night before. This is good, I think... Anyways, here we are just a few days before Christmas and while I asked to have Michael after Christmas for the girls sake, I did not entirely think that one through. The reason I say this is because we have to plan a funeral.. Not very festive, but we have to make arrangements for Michael. I know that I do not want an open casket viewing. We have a professional photographer coming from "Now I Lay Me Down to Sleep" and I hope we can put a little picture of him up, but no open casket. I know he will not be there, I know he will be in heaven and I do find comfort in that - so that is what we have decided. We had to choose the funeral home today and the hardest part is thinking about them coming to the hospital to take him away. Bill asked me again if I wanted to bury him or cremate him and again, I said neither. Bill thought that we could cremate him and then he could then be buried with me when I die. I told him., that sounded fine. Michael will be baptized at the hospital and I know he will be in heaven, and I do believe this, but I am still going to miss him.
My good friend Felix is sick right now. He was diagnosed with stage 4 bile duct cancer the end of July. He opted out of all treatment (at his doctors recommendation) as the cancer was already everywhere and the chemo would have just made him feel worse and it would not have helped. The cancer is in his stomach, liver, pancreas... Doctors gave him 4 to 6 weeks to live and hospice was called in to comfort him. He called me and we both just cried, this could not be happening... I called my brother, as he is an oncologist so certainly he would be able to give us some sort of hope. My brother called Felix's doctor and then called me back and the answer was the same, this type of cancer is rare and extremely aggressive.
Felix worked out of my office for a few years, he is a mortgage broker. I often bring my children to work with me and they would always make a bee line for "Mr. Felix's" office. Mr. Felix is a big teddy bear kind of guy and he always stopped and played with them and made them feel special. He even took them on trips to the mall, the playground, McDonalds and various other locations. The girls are just a little bit older than his grand babies. I explained to the girls what was happening with Mr. Felix and they cried and then Abbi, my 9 year old insisted on getting Mr. Felix an angel of his own.
As a parent, there are some moments you just can not forget. The details to this day are so clear. Abbi was 5 years old and it was just a few days before the Fourth of July. I had just given the girls a bath after spending a day at the beach. I was putting their jammies on and noticed a small little lump on Abbi's neck, right at her collar bone. I mentioned it to Bill and made my brother look at it and the consensus was not to worry. I was thinking, swollen gland, bug bite, cold, who knows? The next morning, she woke up and it grew a little over night. It was not red or warm, just bigger. I called her pediatrician thinking antibiotics before the weekend as I did not want her to be sick over the Fourth of July. As I watched her pediatricians face, I knew she was not thinking, it was no big deal - in fact it was the opposite. After that moment, things get a little fuzzy, but my brother and husband apparently had suspected the same thing as Abbi had also developed a rash and was "presenting" classic non-Hodgkin's lymphoma symptoms. The pediatrician sent us to the hospital for blood work and x-rays and Bill and my brother were already 2 steps ahead of me. We were greeted by another doctor, a surgeon that wanted us to go to another hospital in Pensacola, a little over an hour away for surgery that day. Whoa, cancer? My 5 year old? Not possible!!! Now, this next move was probably completely irrational, but at this point who is rational? I asked, no begged for antibiotics and to let us go home and enjoy the Fourth of July. My reasoning was 1. two more days could not hurt, right? and 2. maybe it was just a swollen gland? (a gland that did not hurt...) They reluctantly let us go with surgery scheduled for Monday morning at 6:30 a.m. Now in hind sight, I was a complete absolute basket case. I knew, I just knew. We cried, I got sick, we called St Jude's. I remember sitting on our porch after putting the girls to bed that night and listening to the waves and I remember begging God to make it me, not her. I remember Bill being mad. The very thought of her having to be treated and be sick was just too much. That was a very, very long weekend.
Fast forward to Monday morning. We got to the hospital and Abbi was amazing. She was calm, I was not, but I think I put on somewhat of a decent game face for her. Unbeknown to us, her very quiet surgeon went to church Sunday and asked for prayers. He said, it did not look good for this little girl and she could really use prayers. Over the weekend this lump continued to grow and was about the size of a golf ball. Abbi was also beginning to bleed into her chest, none of this was good. After Abbi was wheeled back for surgery, my friend Shayne came into the waiting area. Shayne is a walking, living miracle and her story is absolutely incredible. It always makes me cry (but in a good way). Anyways, please understand part of this miracle is Shayne getting out of bed at 6 a.m., ha, even if she does read this, she will agree with that one. Shayne's story is for another day, but suffice it to say, it's a really good one, in fact I am going to make her share it, because it is important. So it is 6 a.m. and she is there, because she is just that kind of friend. She comes in with this little beaded angel and she needs to go back and see Abbi. Shayne is also a nurse and does not like to hear "no", so not surprisingly (and thankfully) she went back to see Abbi and tucked this little angel in next to Abbi. This angel was given to Shayne when she was sick with metastatic cancer and well, without launching into that story (yet) she is cancer free. She told Abbi that someday, she would need to pay it forward. I have no idea how long Abbi was in surgery, I just remember that it was surgery on her neck (like that's not nerve wracking enough). This is a mother that can not handle her own child's immunizations (I cry). So, after the surgery, the surgeon came out and he was visibly fighting back tears. He looked at us and said, it's gone and it's not cancer. I remember my brother saying, I will never look at medicine the same way and I just kept thanking God (a lot). The point of this story is that Abbi has heard it a few times and so she thought Mr. Felix needed an angel like hers. Well she found a special angel for him and while his cancer is not gone, I reminded them that he has now lived 4 times longer than the doctors said he probably would and that too is a miracle. Miracles come in many shapes and sizes and it is usually in hindsight that I am able to recognize these gestures. That was a biggie and if you don't believe and chalk it up to science that is ok too because in reality life is miraculous, but seldom am I shown this with such clarity or seldom do I pay close enough attention. This angel is symbolic, it's not that it was magic, but the story, the act is what is important and this angel is a reminder to all of us that life really is miraculous however long or short it is.
Jodi, I am an ivillage member and a May 09 mommy. I came across your story a couple of months ago and have been following you through your struggles, praying for you and your family. I cannot imagine what you have been through and cannot even begin to put into words enough thoughts and prayers to make this situation even a little better for you. I just wanted you to know that your story has touched more people than you know. Thank you for sharing your blog. It must be comforting to be able to share your thoughts with others. I even think that your blog would make a wonderful book. Writing your story may even help others who have faced some of your same hopes and fears. My thoughts are with you and your family.
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