TOO GOOD TO BE TRUE (5 month old)

When Santi was almost five month old, one of my dearest girlfriends sent me an email that only had an attachment that looked like a wine bottle label, I thought she made a mistake. When she called me in the afternoon to tell me that she spoke with a very knowledgeable doctor in Buenos Aires (the capital of my home country) about Santiago’s condition and that he told her that he had a treatment for us. My heart stopped. She said that he was a very well respected doctor and he had been helping her family for years. The wine label attachment that I could not read was his name with all the medical specialties he practices and there were many!. After my initial excitement, I asked my girlfriend if she told him specifically that Santi was diagnosed with JXG (if she actually used the right name?) and she said yes! I told her that I was astonished because all the doctors we had talked with in the U.S. (two very well known dermatologist and one excellent oncologist) said that there was no treatment and we just needed to wait. She gave me the doctor’s email address and said that he would be expecting my email. I thanked her deeply because even if it did not work, she took the time and the effort to make the connection and I knew she had only our best interest at heart. As I was writing the email to the doctor, it occurred to me that he must have thought that Santiago had a systemic version of JXG, and therefore, he would most likely recommend chemotherapy or radiation. I also thought that maybe he was into homeopathic or organic medicine, which I was open to. I finished the emailed, attached several pictures of Santi’s lesions and hit send with a lot of hope and fear of disappointment. The doctor emailed me that same afternoon and confirmed that he had treated cases of JXG and he could help us. He said that his treatment would have Santiago lesion free between 4 to 6 months at the latest! and he warned me that without treatment the lesions not always regress on their own. He then said that if I agreed to the treatment, I should send him $3,000 via Western Union. I froze! I was thrilled to imagine that the JXG nightmare could disappear in months instead of years, but I could not help noticing his lack of treatment details and the very high price (especially considering that the Argentinean peso/dollar exchange rate is 4 to 1). I emailed him back asking for more specific info about the treatment and I received a response the following morning. He said that the he uses Quantec Technology, Quantum Physics applied to remote healing and gave me a few links. I read all of them and I could not understand how it worked. Nonetheless, I knew someone that would, a very smart and successful Physics and Material Science Professor, my husband. When my spouse came home that afternoon, I told him the full background of the situation. He looked at me with love and some sadness and said: “Babe, this sounds like a scam. There is not such a thing as remote healing with Quantum Physics”. I repeated to him that the doctor was very respected and known in Argentina and that our friend’s family had been seeing him for years. It could not be a sting!. On my insistence, my husband agreed on reading the links and emailing the doctor requesting more in-depth information. We indicated this time that Physics is my husband's area of expertise and ask the doctor not to spare any technical details. We received another email full of links and with the mention of important universities such as Princeton and University of Granada. Once more, I could not make sense of these articles, my English was not good enough to read this level of science, so I asked for my husband’s help. “It is not your English babe, this is just mumbo-jambo using physic words but it does not make sense to me either. Plus, I know the guys at Princeton and this is not what they are working on. We gotta report this doctor to the Argentinean authorities!. I told him that I would not do that because of my friendship. I was devastated that the magical solution was shattered. The following morning still not ready to let go, I emailed the doctor for a last chance, asking if there was a guarantee for his treatment. As usual, he replied pretty quickly and this time he was furious! He said that Americans are used to get guarantees for everything, but his treatment was not like a pair of shoes that could be returned to the store if they did not fit. He was offended by my questions and he told me that he was an honorable doctor who has helped many people during his career and he had nothing to prove. He even went further and said that he understood now why Santiago got JXG. It was my husband’s and my bad energy that has caused it. So now, in order to heal Santiago, he would need to treat us too! He finished his email saying that he would keep the same price for the treatment of the 3 of us, just because he wanted to help our baby and he repeated the address where to send the money to. I was full with rage, I wanted this guy in jail now!. After a few days to calm down, I called my girlfriend to let her know what happened. She was very surprised by the doctor’s conduct but still swore to me of his honesty and capabilities. She trusted him with her own kids and her faith in him was so profound that she told me: “..but if you were rich, and you could spare $3,000 easily. Wouldn't you do it? I know I would”. After thinking a few seconds I replied: “No, I would not. If I had that money to spare, I would give it to Dr. McCain at Texas’ Childrens Hospital and the Histio Heroes Research Fund that are conducting the first JXG Registry in the country. It will not be a magical solution or a quick one, but when they get it (and I know they will), it will be a true answer.

*In honor to the relentless work that Dr. McCain, Dr. Allen and their teams have done to find answers and cures to histiocytic disorders.

LOOKING INSIDE (14 weeks old)

As I continued working with my counselor, I was able to identify three other feelings that were eating me inside: fear, guilt and shame. I felt so bad about them that it took me a very long time to admit that I was harboring them. To have the most precious thing in your life been affected by a disease that doctors know so little about and has no standard treatment or protocol, absolutely terrifies me. Knowing that JXG could develop internally or in Santi’s eye is like having a ghost constantly haunting the back of your mind, no matter how low chances are. I used to look for new lesions every time I changed his diaper (which translates to almost 8 times a day!) and I would stared at his iris in the light, looking for the orange spots. I also did not want us to go out because of fear to have another New Year’s experience. I decided that we should only visit family and close friends who already knew about his condition. It was even harder to acknowledge how guilty I felt about having these feelings. I knew of other children with histiocytic diseases that needed to undergo surgery or chemotherapy. I should be grateful that Santiago’s condition was benign and temporary and that was what I told people. However, deep down in my heart, I knew it was not true. I kept comparing us with all the healthy kids instead. But the hardest one to recognize was my feeling of shame. It was so quietly embedded in my soul that it was not until my counselor said to me: “it sounds like you feel embarrassed by Santiago’s spots”, that I would allow myself to admit them. What type of mother for Peter’s sake feel ashamed of her baby’s appearance?! I was the shallowest person in the world, a monster, and I cried an ocean for confessing my sin.“I completely hate Santiago’s spots and feel ashamed by them and the way that people look at us because of them”. There, I finally said it! After I put myself back together, my therapist told me that to feel bad about feelings is as crazy as saying “I feel bad because I sweat when I run”. Feelings form in our hearts in response to our circumstances and we cannot control that. However, we can decide “what to do” with them but for that, we must acknowledge them first. As the next step towards accepting JXG, my counselor suggested to join a support group for parents whose children have been diagnosed with JXG and I thought that it was a fantastic idea!. I wanted to teach Santiago to live his life pursuing happiness not avoiding fear. This meant for me figuring out how to coexist with JXG instead of being governed by it and who better than other parents to show me how. I went home and for the first time I sat at the computer looking for support instead of information on JXG. I went to Google and I typed “Juvenile Xanthogranuloma Support”.

ASKING FOR HELP (14 week old)

After rescheduling Santiago’s abdominal ultrasound 4 times (no exaggerations made), I decided to call my former counselor. It became clear to me that all my copying mechanisms were failing in lifting my sadness and that anger and desperation were building up rapidly. I also realized that my husband was more concerned about my well being at this point than Santiago’s and that was not fear to him. In my first session, I talked for at least 45 minutes without taking a breath and then I cried, I cried a lot! The first big realization I had was that I was going through a grieving process regardless nobody was dead. I was grieving that “the way I always imagined having my baby” was not going to happen for me. When I walked into a room, people would not come to me to tell me how beautiful my baby was (most of them wouldn’t) and my biggest concern raising a baby would not be his teething pains or an ear infection. Dr. Kubler-Ross identifies 5 stages of grief and I definitely walked through all of them:1) Denial: despite the fact that I was told twice by different doctors that Santi seemed to have JXG, I did not believe it until the biopsy results came. Even then, I still thought that his case would not be severe against her dermatologist’s warning. For a long time I would skip going to the histiocytic websites because those diseases were really bad and my Santi’s was not. 2) Anger: to say that I was mad is an understatement, I was furious. I was angry at God, at myself, at my husband, at my family and at the whole world if you asked me. Why was this happening to my little angel? Why us? It is estimated that 500 kids are diagnosed each year in the US with some type of histiocytic disorder. The chances are almost as tiny as to win a lottery, a very bad one and yet we got the winning ticket! 3) Bargaining: I started to negotiate with God. I asked him to take the JXG away from Santiago and give it to me instead. I also offered him to give me any other type of disease he wanted if JXG was not of his preference. I started to pray to Saint Expedito, a Saint that helps in urgent causes (I still did not want to believe that JXG came to stay for a long time). I used to pray three times a day, sometimes four. I knew I was not praying, I was telling God what to do. 4) Depression: when I realized that God and Saint Expedito were not doing what I asked, after I was mad to almost all my family members and friends, and I had several fights with my husband, I gave up. I felt completely powerless over JXG. It was obvious to me that there was nothing I could do about the spots besides watching them grow. I felt that I was failing Santiago as a mom. I had a horrible sense of loneliness. Nobody seemed to completely understand what I was going through, not even my husband. Close ones either tried to minimize my feelings, wanted me to be “positive” or they seemed to be in a worse place than I was. 5) Acceptance: when my counselor suggested that I should try loving Santi’s bumps since they were part of his body, I thought she went crazy. When she said that she was concerned that I did not want to come out of my house and wanted me to join a “mommy class”, I thought she was insane. When she pointed out that Santi and I were more “normal” than not, I thought: “that is because you don’t know how people look at us” and when she kept repeating that I was a smart and loving person and she knew that I was going to figure this out with time, I could not visualize it either. However, the fact that she could was already making me feel better.

*My eternal thankfulness to Marilyn, who have helped me work the most difficult issues in my life and have always listened to my truth without judgment.

A VERY SAD NEW YEAR’S EVE (12 week old)

As the last couple of years, we decided to spend our 2009 holidays at my parents-in-law’s home in Maryland. I love going there because we receive tons of love and we are always so pampered that it feels like being at the best resort in the world. Unfortunately, about a week after we arrived, Santiago experienced his strongest episode of JXG and the number of lesions almost tripled in a matter of days. I knew that he could develop more spots, our dermatologist warned us about it, but I never thought he could have so many. I started to feel very concerned about his future. I was afraid of other kids making fun of him at the playground, moms not allowing his children to play with him afraid that he could be contagious and more than anything, I was afraid that people would see his spots instead of seeing him. My mom-in-law, who has a child development degree, also shared my fears and we spent a lot of time thinking of how to prevent the inevitable. Those days, I used to start almost all my sentences by “I am concerned…” and as my husband said it best: “the only thing worse than you worrying about Santiago all the time, is you and my mom, together, worrying about him all the time”. Santi was also having a pretty hard time with his acid reflux and was vomiting nearly every night. Besides, every time he pooped, he looked as he were in a lot of pain and even cried at times. I knew it was not unusual for babies to puke daily when they were this little and that most of them had very painful faces while they are working on a poop. But I could not help to wonder if it was the JXG that was developing internally what was making Santiago this uncomfortable. I started to search the Internet again and I drove my husband crazy until he helped me accessing medical papers from Google Scholar about JXG. I was done with the “yara, yara websites”. I wanted the real thing. Well, if you ever try reading medical journals without being a doctor, you will find it nearly an impossible mission!!! Every two sentences you need to look up something in the dictionary that it is usually defined with another word that you also have to look up. On top of that, add the fact that English is my second language, and there you have the perfect recipe for a frustrated and “over-the-edge” mom. New Year’s came and since my birthday is on January first, my mom-in-law cooked a delicious meal in my honor and invited some of my best friends along with other close family members. I had such great time that after supper, when the time to go a “New Year Party” came, I completely forgot to put Santi’s hat on and boy, did I pay the price! Upon our arrival, we were introduced to a bunch of people, including the host’s very healthy, five month old grandson. It was now our turn to present Santiago and even though nobody said anything, I saw how people were staring at his bumps. I was trying to keep it together when the host came to me and while covering her mouth with her hand said “Oh my God, what happened to this baby’s head” with a face of horror. I tried to minimize it and I told her that he had a skin condition that was benign and it would go away. She left without saying anything else, but the damage was done, I could not restrain my tears. As I was telling my husband that I wanted to leave immediately, the host’s son and dad to the healthy baby, came up to us and asked about Santi’s spots. I let my husband answer because I knew that if I opened my mouth I would start crying right there in front of everybody. After he finished the short version of what Skin JXG was, the guy said “…good to know that it will go away. I have friends that have a kid with cancer…” and he went on and on comparing our situation to his friend’s without realizing it. Needless to say, I was in bed by 11 pm crying and with no energy to make myself stop. The following morning I woke up feeling the same and I stayed in bed most of the day. Luckily for me, I got the worst cold that I had in years, so I had an excuse not to get out of my room. I was officially falling into a depression and I did not care.