Needless to say, I learned there is no “Normal”, we are all unique, we don’t all fit in a nice little box! I LITERALLY REFUSED TO LEAVE THE HOSPITAL with my baby who looked like he was on his death bed. Again, the doctors said without a solid diagnoses the insurance would not pay for our hospital stay. I felt as if I was in some kind of Twi-light Zone. How was this happening, I had top of the line insurance?!?
I put up the fight of my life and what turned out to be the fight that saved my son’s life. After I agreed to sign a hundred documents of liability and promised to pay for all of the costs involved, I was able to finally convince them to reluctantly perform the lumbar puncture.
They tried to force me to wait outside during the procedure, but I refused to leave my baby boy alone… I was a single mom who lives far from family so it was just me and Pookie Bear at the time. I had never been so scared to be a single mommy as I was in this very moment.
The Hematologist who performed the lumbar puncture was supposed to be the best pediatric hematologist in the West Coast. As she tried to insert the long device in his spine, it would not give… it was stuck. She kept shoving the device, she began to sweat, she kept trying different spots on his spine, and then she finally had to practically hammer it in him. I thought she was a quack. Why did my little baby boy have to go through this?
Pookie was only semi-sedated so he was whaling and aching with pain as he arched his back with every poke. His eyes rolled behind his head and he kept gasping… They assured me he would not remember a thing, but this brought no comfort to a frightened mommy watching her baby being jabbed by a doctor who said the procedure would be an easy in and out. I had flashes of me yanking him off the table, running to the elevator and getting away from these crazy people…
I will never forget the look of terror on that physician’s face… she looked at me with a look of complete and utter disbelief and fear. After about 30 minutes- swarms of people started to surround me and offer me food and water, holding my hand and asking if I had family nearby. All I could do was hold Pookie really closely!
I had that sinking feeling inside but nobody was saying a thing… nobody! Later I learned they were all waiting for the official laboratory results to come in to confirm his leukemia. The Hematologist knew he had A.L.L. when the device would not go in his spine…
My son was so completely impacted with leukemia , the doctors had no idea how he was still alive. His poor little spine and bones were so brittle and his condition was so fragile that they immediately began emergency surgery. They said if I had not brought him in, he probably would not have made it much longer…
Remember this is after several rounds of Emergency Room visits and about 20 doctors office visits who all said for about a year that he was a PERFECTLY HEALTHY boy… They kept saying boys who truly feel ill don’t smile so much and that everything was just fine! Over and over they kept saying that I was just a first time mommy who worried too much and he was just an active toddler with bruises and bumps. No big deal .
All of a sudden the room started to spin, they had me sign about 50 forms and started hooking him up to an IV. Before I could blink… my Pookie Bear was rushed into heart surgery to have have a Port attached to his heart valve. I remember the heart surgeon came in to sit with me, he held my hand and he slowly, calmly explained to me exactly where he was going to cut, and assured me he was going to be just fine.
I don’t know if my memory is accurate- but I could swear he was dressed in all white, that his hair was white and his teeth were the whitest I had ever seen… He looked and spoke softly like an angel. I think he walked on clouds and I even heard harps playing in the room… lol 🙂
As I sat there on pins and needles, I spoke to all the angels and begged that my little baby would be ok. After what seemed like an eternity, he came through the surgery with flying colors! He asked for the food and ice cream I promised him and wanted to know when he could get up and play! He never complained… NOT ONCE! He was the strongest person I had ever met and I finally started to breath again!
I asked the doctors what caused this, what could I do to help him heal, what could I do??? What could I do??? Over and over I was told by the doctors that he had Cancer for so long that there was nothing I could do but make sure he receives his chemotherapy and radiation and to never miss an appointment for the next three years. I was told he needed so much chemotherapy and radiation that if he was to survive, he probably would never write, draw or learn appropriately…
I refused to believe there was nothing I could do for my baby… I started to read and read and read… research research research! In addition, I started to read to him even more, we started practicing drawing, counting… I was not giving up on him. I live an hour away from my parents and due to his fragile state and suppressed immune system, only doctors, nurses and myself could be in his room, so 90% of the time it was just me and Pookie Bear. While he slept, I read, studied and learned about Natural Solutions.
I learned so much about how other countries were using Nature, such as fresh juicing, organic eating and healthy living to help cure Diseases of all types. I immediately started juicing for my baby boy. I immediately removed all toxins from his environment… When we were not at the hospital, he was getting tons of Sunshine and fresh Beach Air. We went completely Organic and removed all pesticides, hormones and antibiotics from our diet. Our life style dramatically changed. Although they convinced me that I had to give him chemotherapy for the next three years, I elected to not give him radiation so he could have a chance at having children.
They warned me that it would take forever to get the cancer out of his system, that he would test positive many times before he would be clear… but instead of more bad news, I was told that something INCREDIBLE happened. He went from having a poor prognosis for survival to having no sign of Cancer. WHAT???
Was it the chemotherapy, was the intense juicing and healthy smoothies, was it the Organic eating, natural remedies, was it the positive affirmations and his positive attitude or was it the millions of prayer lists Pookie Bear was getting? Honestly, I think it was all of the above.
We lived in the hospital for the next three years… For the first year, at least 5 to 7 days of the week we lived at the hospital or the Ronald McDonald House. Pookie’s struggle touched so many people, he received hundreds of food casseroles, cards, drawings, prayers and love from so many people. I am so thankful for my incredible boss who gave me the time off, who never complained… and my mom who would come when she could…
We had to live in a bubble for so long… every time he was exposed to family or the public he contracted a virus or illness and became very sick. He constantly had a fever, and almost died twice… I had just moved from Los Angeles County so everyone was so far away… it was a dark time in our lives, but searching for cures and treatments inspired me and kept me going.
All the parents in the Cancer ward lived in a state of anxiety and fear… Kids silently disappeared in the wee hours of the night- some were his roommates, some were the kids he played with a couple of days before… Code Blue Code Blue, Nurses running, Doctors running… a sudden silence, but nobody said a word! Everybody praying for that baby, everybody praying that their baby was not next.
Pookie never complained about the chemo, about throwing up, about the large shots, about the lumbar punctures… he just wanted yummy food and wanted to know why his hospital friends kept disappearing? 😦
I was determined from that moment forward to learn how to help these kids and their parents… How are Food, Nature and Healthy Living Skills capable of helping kids? Why are we not applying these natural remedies in this country? I learned how genetics play a role in diseases, how genes combined with our partners genes play a role. I learned so much about Food and what a gamble it is to just buy food off the shelf with out knowing or understanding what is in the ingredient list.. Pharmaceuticals do have a place in our world, but not always the big role they have created!
Fast forward, Pookie Bear is now 18 years old and has never tested positive for leukemia again. His treatment protocol lasted about 5 years instead of three years, but he can read, write, count and is very articulate and an extremely intelligent young man. I cried the first time he drew a picture, the first time he did a math problem and when he learned how to read.
It turns out that the original hematologist who diagnosed my son was a wonderful and compassionate woman. She and all of the other Oncologists, Nurses and Volunteers have one of the toughest jobs in the world. They all were doing their best with the information they have. Nobody had taken the time to tell them that there are things we can do to make the Chemo treatment plan more smooth and that food can play an active role.
I have since continued my educational training and I became a Holistic Nutritionist. I have another baby boy who is now approaching 3 years old. He has had his own struggles with health… various gastro-intestinal issues that I had never even heard of before he was born. This time I thought I was ready to take anything on, this time I was prepared… Again, I continue to learn that I don’t know what I don’t know.
So what are the Genetics involved with leukemia and other diseases? What is the real Prenatal care you can do that doctors are too busy to tell you about? Why are some healthy Foods a Medicine for you but a Poison to others? How are Allergies related to Disease, and are eczema and Psoriasis just no big deal?
Most of all, I have learned to trust myself as a mommy… to tell every parent I know to trust those natural parent instincts… they are powerful and they were given to you to protect our young! Every child is different, if you feel something is amiss… Check it out! Do the research! Get a 2nd and 3rd opinion until you feel at total peace!
Im looking forward to sharing my reflections, recipes and remedies I have learned. Thank you to all the parents who have confided their painful and happy baby stories and pregnancy experiences. I can tell you that hearing your voice transform from fear and confusion to peace and understanding has made this long journey worth while!