Saturday, July 17, 2010

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.

Saturday, April 24, 2010

JXG CHAMPS (30 week old)

Becoming aware of other family’s JXG stories has been one of the most crucial components in accepting my baby’s condition. When we just received the news of Santiago’s diagnosis and we started to investigate what the doctors meant by a “rare disease”, a horrible feeling of isolation and fear came upon us. I remember reading medical papers and explaining what was happening to us to other people and wishing there was another human being that I could talk to and had gone through the same. I am not exaggerating when I tell you that it is with tears of joy that I announce today the launch of our “JXG Champs” section. I know from experience that it is not an easy step for any of the parents to open up to the world and post their child’s journey with JXG. We give a lot of thought to the risks and rewards involved in the process and it is not a decision that can be made lightly. We all want to support each other and help other families struggling with this disease, but we must protect our kid’s privacy and we know we are running the risk of our intentions being misinterpreted or having people feel sorry for us. Yet at the end, we bet on the bright side of life. It took a lot of effort and courage from many people to be where we are today and I do not take it for granted. My hat is off to each of the families that share the story of their little hero. Their love and relentless fight cause nothing but admiration, respect and optimism in my heart. I hope it does the same for you!

*My deepest gratitude to Carolina Soza who created this beautiful logo for our group.

Saturday, April 10, 2010

TAKING ACTION (23 week old)

For me, one of the most challenging aspects of Cutaneous JXG is dealing with the feeling of powerlessness over this condition. Once the biopsy results come back and the doctor explains what it is and says: “we are going to keep a close eye on it” (meaning a follow up every 3 month with him and another one with the ophthalmologist), we think: “that’s it?. It can’t be”. So, most of us get home and launch into the internet to conduct our own research. After we absorb tons of info to the point that our brains become like mushrooms and we confirm that the doctor was right, we are still not satisfied. Now we look for a 2nd, a 3rd and even a 4th opinion! Besides some differences in tests (some doctors order more than others), they all tell us the same: “Wait. Be patient. It will go away in a few years” and this time our inner voice whispers “easier to say than to do”. After I posted a few articles on this blog, many of my dearest friends asked how they could help? What they could do?. Besides telling them to donate money in honor of Santiago to the Histiocytosis Association of America or the Histio Heroes Research Fund I did not know what else to offer. At that point that was the only thing I did but I knew it should be more. The last couple of weeks I searched other organizations and I discovered many other ways to fight back. I was ecstatic to see that so many people around the country are working very hard to find a cure and that I did not need to re-invent the wheel. I just needed to create a place where all these wonderful ideas could be easily accessed and this is how the “Take Action” section of the blog was born. As indicated there, some of these avenues do not take more than two minutes and many of them are free. I have tried all of them and even though some have not paid back yet, they made me feel empowered and not alone. I understand that all these efforts will not have a direct impact on my baby’s condition but they will help someone else's child in the future and that is a great sensation to have. In those days when it is obvious that impatience is winning the battle, my husband says: “Remember babe, a watched pot never boils” and a smile is drawn in my face immediately. Hopefully, by taking part in some of these efforts, we will not feel like the JXG pot takes forever to bubble.

Thursday, April 1, 2010

MY WISH LIST (18 to 22 week old)

This picture was taken the day that Santiago rolled over for the first time. My husband and I were waiting for this to happen for a while, so we celebrated it if Santi won a gold medal. We asked our little angel to do it a few more times and he delivered a perfect performance every occasion making us the proudest parents in town!. After his fourth or fifth “act”, I looked at my husband and said: “I wonder when is he going to sit up?”. Human beings are unsatisfied creatures by nature, we always want more and I was no exception. Once, all I yearned was for Santi to be JXG free and learning from most experienced parents the best way to deal with the condition. Yet, in the middle of the journey, I came in contact with many JXG families and my original goal felt too small. Today, not I only want this disease to go away from my son but not to afflict any other kid. My vision is a world free of JXG and where there are cures for all histiocytic disorders. In order to fulfill this new mission, this blog should: 1) Provide JXG families and their loved ones with information and emotional support. 2) Give people the opportunity to take action by raising funds for research, urging government officials to help the cause and increasing awareness. The task seemed enormous and endless but it did not matter to me. JXG has the characteristics of resilience and patience and so do I. I started my efforts by researching many successful organizations that share my vision. I learnt a lot about fighting histiocytosis and more ideas kept invading my brain. One of my steps was to contact the Histiocytosis Association of America (HAA) and after becoming familiar with their programs, I underwent their training and became one of their volunteers. I also created a Juvenile Xanthogranuloma Online Support facebook account to reach out to more families. With the help of some members of our group and HAA staff, I added a “FAQ” section to the blog and I improved the “News & Events” and “About JXG” sections of the page. In conjunction, I wrote to some local and national health shows asking them to have programs on histiocytosis (no success here yet) and I signed up to and similar agencies that provide petitions to benefit families suffering a rare disease. Lastly, I followed the advice of creating a new webpage for our group (with its own domain, hosting, etc.) and as I have no clue on how to do this, I asked for help to two of my computer savvy friends. They both said yes with no hesitation and jumped on the project right away. With so many things happening, I had very little time to stay in touch with my friends so when one of them finally got a hold of me, she said: why are you doing all this? It is not your job to fix this problem and when do you find the time for it with a 5 month old baby?” Well, I said: “if it is not the job of the JXG parents to fix the problem, who else is going to do it for us?. We know that because histiocytic disorders are considered a rare disease the government will not do too much about it. And regarding the time, I do my “Histio Activism” very early in the morning after I feed Santi his early breakfast. He makes sure I wake up”. After 4 weeks into my work, I started to feel exhausted and a little bit discouraged. The short nights and the lack of responses from many people and institutions were definitely taking a hit on me. My initial enthusiasm and optimism were fading away and isolation and impotence were looming back. Having worked against sexual violence and other forms of oppression, I recognized the symptoms. Sooner or later they attack anybody that fights any social cause. I felt confused about my new goal, “was I really overdoing it?”. I thought about it deeply and I realized that all these projects were my way to fight back, but something did not feel right. In the last couple of weeks, Santi had another episode of lesions. Many new bumps developed and the condition moved from his face and head to his back, neck and extremities. I cannot tell you exactly how many lesions he has now, I stopped counting when we crossed the 60 neighborhood. Besides, who cares about numbers at this stage! After a few more days of introspective thinking, I was able to see that my excessive work for the blog and the cause, although very praiseworthy, was a escape not to feel my anger, fear and powerless with this new relapse. But how could I find a balance? I kept wondering. Last Sunday, we all went to the zoo, and my question was timely answered. As we walked out of the manatees exhibit, I read in the wall: “We cannot do great things on this Earth, only small things with great love”—Mother Teresa.

*My deepest thanks to Andrea Arredondo, Esteban and Carolina Soza who joined the cause by helping with the creation of a new Juvenile Xanthogranuloma Online Support site.

Tuesday, March 16, 2010

REACTIONS TO THE BLOG (17 weeks old)

“Alone we are rare. Together we are strong" was the slogan for Rare Disease Day 2010 and this blog just proves it right. About a month and a half ago when I started to write, I never imaged that the Juvenile Xanthogranuloma Online Support blog would achieve all its initial goals in such short period of time but it has!. I am thrilled to report that through the blog, we have been able to create a JXG Roster that, as of today, has twenty members from all over the country, Canada, Belgium, England, Malaysia and Australia. All its parents (and I use the word “parents” because we have a dad) are available to give each other support via phone, email or facebook. While some folks feel more comfortable talking with someone with the same diagnoses (we have cases of Skin JXG, Systemic JXG and Ocular JXG), others rather connecting with members that live in the same state or whose children are the same age. In my case, I have found that communicating with all of them at once is the best resource of information imaginable. Thanks to the info gathered within the group, I was able to advocate for Santi to have blood-work done and ask more informed questions to our doctors. But besides this sharing of notes, the encouragement, validation and understanding offered by the other parents have been invaluable in restoring my sense of balance and sanity. Special mention deserves all the emails that I have received. Each of them has moved me immensely and given me more strength to keep going with this project. Some of the parents who wrote were, same as me, pretty new at dealing with JXG. They had my same questions regarding differences in protocol, statistics and I could feel the worry and anxiety in their words. Almost all the emails talked about the obstacles that the families needed to overcome just to get the right diagnoses: long trips to medical facilities, months of jumping from doctor to doctor, and several trials of unsuccessful treatments were the common denominators. A few of the readers opened up and told me that they saw their own reflections in my breakdowns, relationship struggles and parental feelings that we are not supposed to have. Finally, the messages from parents whose kid’s lesions are healed or almost healed, were very uplifting and full of hope. Some of these readers sent me pictures of their children’s lesions prior JXG and after JXG and they always mentioned how they could relate to parts of the story. Another wonderful surprise has been the support offered by non-JXG-related people, some of which, I have never met. One of my 3er cousins, that I have not seen in at least fifteen years, decided to translate my texts to Spanish. He said he wanted to support the blog and help Spanish speaking JXG parents not to feel alone. A friend of a friend, who assesses websites for a living, provided me with a complete evaluation on how to improve the blog and gave me many excellent ideas to reach more people (hopefully, we will be able to implement some of her suggestions in the near future). But, since this is the real world and not Disneyland, there is the other side of the story too. After writing the texts: “Asking for Help”, “Looking Inside” and “Not always on the same page”, I have received some pretty harsh criticism. One reader told me that “I was putting myself in a victim role and that I was expecting people to pat my back but she would not do that”. A few others wrote saying that “I was exaggerating and seeing things out of proportions and I needed to remember that JXG was benign and temporary”. Other follower indicated that “I should reevaluate my priorities because it was clear to him that I was putting the disease before my son and husband”. And someone suggested that “instead of spending time writing this blog, I should play with Santiago or return to work”. As you can imagine all these comments were painful to read and as a consequence I stop writing for several days. I felt too exposed and hurt and I needed some time to rethink about my commitment to truth. After this time to cool off I was able to see that: 1) None of these opinions came from people that dealt with JXG, actually all of them started with something among the lines of: “I never experienced JXG and I can’t imagine what you are dealing with, but…”. 2) People who wrote them did not mean harm. They just lived my distress so vividly that they were too upset to comprehend the point of the blog. So, here is my conclusion: I accept that not everybody is going to understand what I am trying to do, that not every reader is going to like each of my columns and that from time to time I will receive negative emails, yet I will not reply to them anymore. The purpose statement of the Blog clearly says: “Take whatever is useful to particular situation and leave the rest!” and the option of not reading the blog is always available. At the end of the day, I am not willing to turn down the intensity of my writing or my desire of being frank to avoid upsetting people or getting unkind criticism. The rewards completely outweigh the risks!

Friday, March 12, 2010

THE BLOG (16 weeks old)

I started to write this blog the first Sunday of February, 2010. I remember it well because it was Super bowl Sunday and I could not focus on the game at all (not that I am a crazy American football fan either). I went to the office and sat down at the computer for a while, I really did not know where to start or how. I just wanted to connect with other JXG parents wherever they were: "a very simple goal". The only thing that made sense to me was to write about our story, and I made a conscious choice of telling the good, the bad and the ugly. I am a firm believer that for anything to be good, it has to be truthful even if that means making myself vulnerable or upsetting other people. I wanted this blog to be very good (not just good) and make it a safe place where people could share the feelings that they do not show anywhere else. This was part of the beauty of using the internet. Writing has always helped me processing difficult moments of my life and this time has been no exception. But besides, creating a “stress releaser” for me, I wanted to validate other parent’s journeys with JXG. After I wrote my first text, I went to Google to find my blog and I learned, to my big disappointment, that the Internet is not magic and my page was not showing. I ran to my husband to tell him what happened and he said that it would take about a month for my page to show up, he said that Google needed to “index” my page. “What do you mean?” I said, “Google gotta be faster than that. Plus, I do not want to wait a month to connect with JXG parents”. I left the room thinking that my “tech support guy” did not know what he was talking about and I emailed my Internet savvy friends (who do this for a living) just to find out the same answer. They told me about “mega tags”, “crawlers” and websites that would help my blog to show up faster in the net. Someone also suggested to email my friends and family and ask them to visit the site often. What a pain! I thought. I hate dealing with computer stuff (I am terrible at it) and I am not sure if I want to share my inner feelings with people that know me so much. But well, if that was what was needed, I would do it. So I did the best I could with the mega tags, I posted notes about my blog in all the Spanish and English speaking histiocytic associations that I could think of, also left comments in all blogs, forums and facebook related sites and I emailed my friends and family. A few days went by and nothing, I checked the computer every couple of hours and it was always the same: no comment, no reader. I kept writing to fulfill my venting purpose and one day when I opened the blog, surprise, I had a reader, yeah! I clicked and found out that it was my sweet husband. I Kept writing and sometimes was hard to relive some situations but I wanted to tell the events in chronological order and stick to my goal of honesty. More days went by and more readers show up, always friends and family members that were giving me their support. I started to lose my confidence and told my husband that no one besides him, some friends and family were reading the blog. He assured me that was not the case and to prove his point he installed a visitor counter. To my surprise, he was right, I do not have such big family and I have not that many friends either. So someone else was reading the blog but who? Were they JXG parents?. A few days later, I opened the blog and a “Michael Golding” showed up as a reader. I did not know him, which meant that he was a "real" reader!. It took me forever to figure out that he was the same Michael Golding of the “Sydney Salem Golding Fund” that had inspired me so much. Mike gave me the names of all the JXG families associated with his organization (Histio Heroes Research Fund), and since that moment he has been a great asset to the blog and a wonderful role model. With this information, I looked everybody up in Facebook and emailed each of them. I finally connected with my target audience!

*My most sincere thanks to Michael Golding and the Histiocytosis Association of America that have helped me to connect with other JXG parents and have provided Histio families with much needed leadership to find a cure.

Tuesday, March 9, 2010

REACHING OUT (16 week old)

“God grant me the serenity to accept the things I cannot change. Courage to change the things I can, and wisdom to know the difference”. During the first three months of Santi’s JXG diagnosis, I used to repeat this countless times throughout the day. The first part was crystal clear to me, I felt powerless about pretty much the whole condition. But the second part, what were the things that I was supposed to change? We had already done our deep research about JXG, gotten two second opinions and Santiago had a protocol that the three doctors agreed on. Yet, I did not feel at peace. I knew there was something more to the second part of the prayer. Following the Latin advise "mens sana in corpore sano" (healthy mind in healthy body), I decided to join a gym. If I could not make my mind think clearly at least my body would work properly. When I went to visit the “fitness” facility, I took special interest in their child care center. It would be the first time I was going to leave my 3 month old baby with someone else and as a first time mom, I was a little paranoid about it. To my surprise, I loved the child care center and the entire gym. I was impressed with the size of the club and the country club level of service. When I had no more questions to ask and ran out of excuses not to commit, I told the “fitness advisor” about Santi’s condition. I did not explain to him what JXG was but I told him that my baby had a skin condition that it was not contagious but expresses with little bumps in his body. I was honest and shared my concern of other moms inquiring about him and I offered to provide a letter from our dermatologist. Unfortunately, I know the case of a mom whose baby has very visible JXG lesions (like Santi’s) and that was denied service at a children’s hairdressing salon after a customer complained to management (the client thought that the baby had chicken pox). To my delight, the gym representative assured me that it would be no problem and if someone complained, he or his boss would personally take care of the matter. The following Monday, I showed up with Santi for our first “work-out”. There were four other babies and tons of toddlers and older kids running around. I left Santi with his hat on and sleeping in his car seat, in the most perfect scenario. When I came back, he was being held by one of the baby sitter as she was walking around the center supervising other kids. No hat, no tears and with a tranquility that you would think this baby lived in a house with ten other siblings. It has been two months since then, and I am happy to report that there has been no incident (or at least nothing has been said to me). Santiago loves the child care and all the caregivers fight over taking care of him. He has a little “girlfriend” whom he giggles with constantly and when they talk, it looks like a Johnson & Johnson commercial. Besides the benefits of getting back in shape, the gym has given me confidence to interact with the real world again and has provided me with opportunities to prepare answers about JXG in a very relax atmosphere. Example: I was feeding Santi his bottle when a beautiful 3 year old girl asked me: “is your baby sick?”. Before I could reply, her mom jerked her back and told her that it was not polite to ask those questions and took her home. I was not mad or offended, I just did not know what to respond to someone this little. I started to think what type of responses I could have given to this little girl. I talked to one of my best girlfriends and together came up with a toddler/ preschooler answer. Sure enough, less than 2 weeks later another opportunity came along. This time I was bottle-feeding Santi at the entrance of the gym when this cute 4 year old boy came up to me, while his mom was checking in, and said: “is that baby real?” and I said: “yes, he is eating”. And then he asked “what does he have on his face?” so I told him: “he has big freckles that will go away when he is older”. “Ahhh…” he said, and continued asking other things about Santi. The scene has repeated itself 4 times (the last one was yesterday) and each time I feel more comfortable when it happens. I know it is not a true answer and that it does not fly with all ages but for older kids and adults I have another “easy answer”. For them, I say that he has “Allergies”. Once again, not true but: 1) people know that it is not contagious, 2) that it goes away and 3) I can get going with whatever I was doing in less than a minute. It is not that I am ashamed of Santi’s condition as I once was, but I do not always have the time or the patience to give the mini JXG explanation, specially to people that I do not know. I know the way I handle people’s questions about JXG will have a huge impact on how Santi will feel about himself. Therefore, if I make a big deal out of them every time somebody asks, he will feel like it is a big deal. My husband and I have thought of many ideas how to make Santiago feel comfortable with his condition. I wondered what the other JXG parents were doing. What worked for them, what did not. Again, I yearned to have a JXG Support Group, but where could I find the members for it?.

Saturday, February 27, 2010


Denial is a powerful mechanism and the foundation of the saying “ignorance is a blessing”. In my many years educating against sexual violence, I dealt with it firsthand. I had people playing with their cell phones during my presentations, falling sleep, and even walking away. As the matter was only job related, I did not take these reactions personally. I was bursting people’s imaginary bubble of safety and they did not like it. Eventually, I knew they would get it. Today, my baby is one of the 30 million Americans affected by one of the 7,000 conditions labeled as a “rare disease” and I am up against denial again. The issue hits too close to home to have the patience to accept people’s indifference. According to the National Organization for Rare Disorders (NORD), some of the challenges that families afflicted by these conditions experience are: Difficulty in obtaining a timely, accurate diagnosis. Limited treatment options. Difficulty in finding physicians or treatment centers with needed expertise. Treatments that are generally more expensive than those for common diseases. A sense of isolation and hopelessness. I said yes to all of them!. Rare Diseases are considered “orphaned”, meaning that they affect too few people to warrant government-funded research. As I started to learn more about histiocytic conditions, the concept of our children suffering and dying in such small number that our tax money is not worth to be spent on finding a cure became more UNACCEPATBLE and ABSURD. We must make a change but how do we get public support? I started by thinking of my mind-set before JXG. What would have been necessary to catch my attention then?. After all, I was a “privileged” healthy women with a perfectly “privileged” healthy family and Rare Diseases could not been further away from my reality. Here are my answers: 1) I would need to realize that it could happen to me or someone that I care about. 2) The information would need to come from someone that I respect in a very “easy-to-understand” manner so I could remember it and 3) I would need to believe that my actions could make a difference. If you are reading this blog, you already covered point 1, so let’s talk about 2 and 3. It is nearly impossible to learn about all rare diseases so let’s pick one or two and process them so well that they became as easy to digest as baby food. This is how I explain histiocitosis conditions and JXG to my friends and family: “Histiocytic conditions are associated with an excess of white blood cells called histiocytes which function is to fight infections. They are part of the immune system but for some unknown reason they start clustering. In most cases, histiocitosis diseases attack children under 10 and some of them are life-threatening and need to be treated with chemotherapy or steroids. They are not the same as cancer though, one of the difference is that sometimes they can regress without treatment, like Santi’s condition. In the case of JXG, the histiocytes believe that foreign materials are in certain parts of Santiago’s skin and they accumulate one on top of another forming bumps. Sure, this is not the best medical explanation out there but people can understand it and therefore pass it on. Working on point 3 now, if we share our knowledge of rare diseases with one or two of our friends and they do they same with other friends, eventually will be a big group of people raising our voices and the Government will need to listen. Also, imagine how much comfort and support families that are battling theses conditions will feel just by knowing that they are not alone and that you took the time to learn about Rare Diseases. If we want to speed things up a little and be more aggressive, we can write a letter to our representatives or to the editor of you local newspaper (please visit our "Take Action" section). To close this article, I am attaching a link to a very powerful video that the Histio Hero Research Fund put on You Tube: For some people, educating themselves about Rare Diseases is a downer, they do not want to leave their happy bubble for a minute. But to me, the real downer happens each time a “privileged” healthy adult rather live in comfortable ignorance instead of helping sick children to find a cure.

*In memory of all the “Histio Angels” that lost their battle against Histiocytosis and in honor of all the “Histio Warriors” and their families that are still fighting it.

Thursday, February 25, 2010


So what happened when I googled Juvenile Xanthogranuloma Support? A bunch of websites with information on JXG came up but nothing about support. Then I tried, Juvenile Xanthogranuloma Group, the same. I typed Juvenile Xanthogranuloma Blog and I finally found a place where a mom was telling about her daily dealings with the condition (see “My Two Happy Home Schoolers blog” under the "About JXG" section). There were many notes from parents like me that turned to cyberspace for answers and they wanted to connect with each other. I spent the following 3 nights “hunting” blogs and discussion forums and I posted my comments in ALL OF THEM. I anxiously waited a couple of days but nothing happened. After a few more nights of short sleep, I decided that I was going to form the first “JXG Online Support Group”. I was so excited about my idea that the minute my husband got up, I told him about it. “Good luck with that. You are going to be the only one out there” he said. I told him for the 40th time about the online notes I read. He proceeded to point out again, that Santiago’s condition was not life-threatening therefore people would not find a need for a support group. I was furious and as a result we had one more of our JXG related fights. In the early days of Santi’s diagnoses, one experienced friend told me: “you need to be really careful how you handle this. It can cost you your marriage if you do not”. What an exaggeration and what a bad timing to tell me this, I thought. Three months from that day, I can tell you that JXG has brought a lot more moments of tension than I initially anticipated. For some weird reason, it seemed that our timing was always off. Example: despite his initial lack of enthusiasm about my idea, nowadays, my husband is the technical support of the blog (I am not a computer person at all). The same thing happened when I wanted a second opinion about Santiago’s condition. He did not think it was that necessary and at the end, he was the one that contacted the doctors and made the arrangements. Our reactions about JXG were always different too. There were moments that made me very sad or upset and he remained positive instead. When I was anxious thinking of internals bumps, he would say: “Skin JXG is just an annoying disease. It doesn't do anything but it takes forever to go way”. I used to count Santi’s spots and while I would freak out every time I there was a new one, his reaction was: “They’ll go away baby, do not worry”. It drove me crazy, didn’t we have the same kid with the same condition? It was not until I saw him touching Santiago’s head in circles with his whole palm extended that I figured it out. That was his way of counting them and feeling if they grew! Recently, and only after I was doing better for a couple of weeks, he finally said “I wish JXG would go away. I hate it”. I was so upset and fragile before that I did not leave any room for him to let his guard down. It would have not served Santiago that both of us were crying, mad or sad at the same time. Most men are wired to be “fixers”, they feel good when they can solve something. Women, on the other hand, usually feel better just by expressing our emotions. The talking does the healing for most of us. Dr. Gray titled his book:“Men are from Mars, Women are from Venus” and even though I believe that both genders have more things in common than not, processing JXG was not one of those for us. And it was not a bad thing!

*To my adored husband, who always supports my dreams and keeps loving me even when I don’t.

Wednesday, February 24, 2010

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”.

Sunday, February 21, 2010

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.

Saturday, February 20, 2010


The day we returned from Maryland, we had an appointment with Santiago’s dermatologist. He was scheduled to see his doctor a month from that day but due to the increasing numbers of lesions and because some of them were developing under his skin, I asked to be seen as soon as we arrived in Columbus. Dr. Witman and her group of residents checked Santi’s new spots carefully while they quietly listening to the details of how the condition was advancing. My husband brought a recent medical paper from 2007 that had many statistics about JXG and we discussed it with the doctors. We wanted to hear them saying that the scabbing of the lesions meant that they were healing, that Santi was like the kid on the medical journal whose spots went away at 4 months but they could not say that. Dr. Witman, explained to us that the peeling and scabbing were part of the normal life cycle of the lesions, however, the yellowing was a sign of maturity. She also told us that the bumps under his skin were not “soft tissue” JXG and that was a great relief! We told her that we wanted to get a second opinion and she gladly gave us the name of 3 very well known children dermatologist in the US and offered to write a letter to our insurance in case they would not cover out-of-state consultations. I brought up again my concern about Santiago’s abdominal pain but this time I could not hide my tears. I told her about my struggle with his condition and she assured me once again that Santi was not in pain. I shared my fears of Santi being discriminated by his appearance and asked her about the possibility of removing the spots. She said that only if by age 6 the JXG did not go away, she would suggest plastic surgery for cosmetic reasons. She explained that plastic surgery will leave scars and there was no way of knowing how big they would be. On the other hand, she said: "we know that mother nature will take care of them with time and most of them will disappear without leaving any marks. Only for the big papules there is a risk of having a residual extra skin (kind of what happens when you take the water out of a blister) and then we would have our friends of plastic surgery help us”. I understood her logic but I still did not like her answers. So I vented, I vented it all, and she listened to me with no rush and an enormous sense of compassion. After I calmed down, Dr. Witman said that she was going to request an abdominal ultrasound for Santiago and that the Ophthalmology Department see him immediately. I thanked her deeply and we were sent to have the eye exam right there. Santi hated every single minute of it. The tests were not painful but long, and for a 3 month old to have all those light going to his eyes and not been allowed to close them was very uncomfortable. Plus, he wanted to sleep and we would not let him. After 2 hours of tests, the ophthalmologist said that his eyes were clear and taught us what signs to look for in case the JXG develop in his iris. She agreed with Dr. Witman that Santi should have these tests every 3 months until he was 2 years old and scheduled our next visit for April. We came home completely exhausted. I called the Radiology Department to make the appointment for the ultrasound and was told that Santi should not eat for 4 hours prior. I told the person on the phone that he was only 3 months, that it would be torture for him not to eat for that long during the day. She repeated again: “4 hours, ma’am”. As my husband left for work, I kept wondering if we were doing the right thing? Did we really need to travel 6 or 8 hours and have a second opinion to hear the same thing? The literature was pretty forward about Skin JXG course of treatment (meaning nothing you can do about it) and there was no doubt about his diagnoses. Did Santiago really need to go through an ultrasound because of the JXG or because his mom could not control her anxiety? I started to realize that maybe this was a bigger issue for me than for Santiago. Then, when a month later I found Dr. Sheila Weitzman video lecture on YouTube (available on our " About JXG" section), her words changed something inside me. “This is a real cosmetic issue for the parents. The kid obviously does not care at all but the parent does…”

*Our deepest gratitude to Doctor Patricia Witman and her team of residents who have been taking care of Santiago with great knowledge and sensitivity.

Tuesday, February 16, 2010

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.

Sunday, February 14, 2010

SHARING THE NEWS (11 week old)

My husband and I though very deeply about how to share Santiago’s condition. Who to tell? How much info to give? At the end, we decided to send a email only to our closest friends and family members, explaining what skin JXG was (we added some links) and describing the medical procedures that Santi went through (i.e. biopsy) and what was next for him (i.e. eye exam). We believed that as he only had a few lesions (5 on his head and 3 on his face), we would put a hat on him and say that the spots in his face were moles. If you are reading this blog, you probably realized that this first plan did not work out for us. The main reasons: People’s reactions, our reaction to people reactions, and the new lesions that Santiago kept developing (as of today, he has over 50). Here are the three types of responses that we encountered: 1) Those that seemed not to have read the part where we said that Santiago had a confirmed diagnoses via biopsy and offered other possible “explanations and course of treatments” . 2) Those that read the email and called right away to offer their support and asked how they could help, and 3) Those that thought that everything was already taken care of and there was no need to contact us. Well, for any significant other reading this blog, “option 2” is the way to go. Number 1 and 3 were painful and even offensive at times. I had people telling me that maybe “my milk” was the reason of Santi’s spots and I should stop breastfeeding him for a while. Others who told me that he could be allergic to our dog, so we should send the dog away for a couple of days. Some others suggested that the spots were a family condition that could be treated with papaya milk, and we also had those who did their own research and came up with other possible diagnoses, treatments and potential problems. Do not get me wrong, I completely understand that all these opinions came only from the most sincere concern that people that love us and love Santiago had. But ultimately, they were not good for us! I was so fragile that I actually thought thoroughly about each of these opinions, forgetting that I already had a biopsy and doubting the knowledge of our doctors. It was also exhausting to be educating people about Santi’s condition over and over. To my surprise, many loved ones seemed not to have read the links we sent about JXG and we had to respond the same questions many times. Lastly, in a few occasions, I ended up comforting others who felt so distressed by Santi’s appearance and possible consequences that did not realize I was the last person to share their concerns with. On the other side of the fence, people on group number 3, made me feel extremely lonely. I tried to make excuses for them. I thought: “Well, the holidays are just around the corner and people are all over the place”. “They live so far away and they never met Santiago. They do not get it”. “It could also be our fault. We did not clarify in our email what we needed from them, maybe our tone was to calm”. Now that many weeks have passed and I am in a better place, I see that every interaction, positive or negative, had a magnified effect on me. So here is what helped. The loved ones who called every couple of days or after Santi’s appointments just to check on us and also talk about others things besides his condition. People that told us that Santi was on their prayers and thoughts, and offered their support in any way, shape or form we needed. And those that let us know that were educating themselves about JXG. Writing about these days is not easy for me. My intention is not to place blame on anybody or make anybody feel bad. I only hope that one day my words will help a parent or loved one that just received the news about JXG and is wondering what to do. That day, all this work will be worthy!

* My warmest thanks to the Nuñez Campero Family, specially Pia, Fita and Juan Manuel, who have been accompanying us since the very beginning.

Thursday, February 11, 2010


I remember very well the morning that we drove to Children’s hospital to receive the results of Santi’s biopsy. My husband was listening to NPR on the radio and my mind was completely blank. No one said a word and once again I was in auto-pilot mode. When Dr. Witman came to the room with a big smile, I knew she got good news, Santiago had Cutaneous JXG. What a relief! I could breathe again! She said that out of all the histiocytoses diseases, Skin JXG is the most common one and the least dangerous. This was really great news until we started to ask questions: “What do we do now?”, answer: “There is no treatment. The condition reverts by itself.” “But when?”, answer: “We do not know exactly. It usually regresses between 3 to 5 years but there are kids that take longer and others that take less”. “ Isn’t there a lotion or special cream we could use?, answer: “No, since JXG is not caused by a bacteria or a virus, we just need to let mother nature takes its course”. “Why did he get it?”, answer: “We do not know. The cause is unknown”. “How many more spots is Santiago going to have?” answer: “We do not know but probably more as he has a multiple expression of the disease”. “How much bigger are his current lesions going to get?”, answer: “We do not know. Papules are usually under 0.5 cm but there are giant nodules, called giant JXG, that are 4cm or more. Like the one he has in his head (the one we initially thought it was a bump)”. “Is he going to get more of those”. Answer: “We do not know for sure but hopefully not”. “Will they hurt him”, answer: “No. The lesions are asymptomatic but can be a problem if they grow in an area of the body that interfere with normal functions, i.e. his eyelid”. WHAT TYPE OF MEDICINE WAS THIS? My feelings of relief were starting to disappear and my anguish was coming up again. Dr. Witman mentioned that the eye was the most frequent organ involved with cutaneous JXG and even though the occurrence was low, earlier detection was key. Santiago would need to have an eye exam every 3 months until he was two years old. I asked her if his severe acid reflux could be linked to JXG. She said that probably not but she could not give me a definite answer. I asked her if we could test him for it and she said that we could, but she thought it was unnecessary since Santiago was developing normally and gaining weight. I gave her my most confused looked and she said “Even if something showed up in the scan, I would not remove it. The only way we could do that is either by surgery or chemotherapy, none of those are recommendable for young babies unless it is indispensable. Santi is responding well to his acid reflux medicine”. On the way back home, my husband was happiest as he could be but I was not and I knew very well why. If you asked any of my bosses about my qualities, they would probably tell you that my planning and organizational skills are my biggest assets. If you asked my husband about them, he would tell you that I am a control freak, and he is absolutely right. I have too many years of therapy not to recognize that I do not deal well with uncertainty. It drives me crazy! I also have a really hard time focusing mainly in the present instead of anticipating the future. JXG was asking me to face my two biggest weaknesses and I was not ready for it, specially with something that involved my little prince.

Wednesday, February 10, 2010


I came home from the hospital with the name of the disease written on a sticker. “Juvenile Xanthogranuloma”, I could not even pronounce the stupid word. I looked it up online and there it was, sure the spots that these kids had were like my Santi’s. It had to be this condition. Surprisingly, there was not tons of websites that popped up right away with clear or easy to understand language, but all of them were in the lines of what our dermatologist told us. Still in my auto-pilot mode, I emailed the news to my husband and parents in-laws and I added some JXG basic websites. Now, many months later, reading that email, I see how naive I was. The “happy go lucky” tone and the minimization of what happened show how powerful denial can be. In the following days, my husband and I surfed the web intensely and discovered that JXG has two types of manifestations: 1) a cutaneous (skin) one, mostly benign and that regresses by itself. Nevertheless, in very few occasions, it can develop in the eye or internal organs in which cases surgery or chemotherapy are required and 2) Systemic JXG, that can present in the brain, liver, kidney, marrow bone and /or longs, and it could be associated with leukemia. This form of JXG has a risk of mortality and not always presents skin lesions. The stories that you find online about babies and parents fighting this disease are just heartbreaking (please read Sydney Salem Golding’s story: I cried myself to sleep many nights and during the days, I would go to the bathroom to sob quietly thus my baby could not hear me. The last thing I wanted was to transfer my anguish to Santiago. My husband was amazing, always trying to keep me grounded in the present and reminding me that we did not have a proven diagnoses yet. He eventually learnt that whether I had a confirmed label for my baby’s spot or not, the only thing he could do was to hold me and kiss me until I calmed down. This WAS NOT how I imagine spending the 2nd month of the life of my child and I felt that we, specially my little angel, did not deserve to be in this situation. Oh gosh, how angry I was!

Tuesday, February 9, 2010

A VERY LONG WAIT (4 to 6 week old)

It took almost a month to get to see the dermatologist at Children’s Hospital and even though it was a long wait, I was not worried about Santi’s skin condition. The spots did not seem to bother him at all and his acid reflux was by far more annoying to him. He had a very hard time latching and breastfeeding became a nightmare time for both of us. Then Thanksgiving arrived, and we hosted our first dinner and had out-of town family staying with us. With so many things happening, the new spots that Santi developed in his head, legs and back were not that concerning to me. I was sure they had to be some sort of allergy (my husband’ side is prominent to have all sort of allergies) and the opinion of our pediatrician’s colleague was not one from a specialist. Plus, we spent a whole Sunday looking at pictures of kid skin conditions on the internet and nothing, absolutely nothing, looked like the spots that Santi had! On the day of the appointment, I told my husband that it was not necessary that he came with us (he already missed a few hours of work due to other doctor visits) and I thought that the most that could happen was that the dermatologist would prescribe a lotion for the spots. Our Children Hospital is a teaching hospital, so if you watch “Grey’s Anatomy” that is exactly the type of feeling you get. First, we had a young doctor, “George O’Malley”, who introduced himself as a resident and checked Santi’s spots. He said that he was pretty sure he could identify what Santiago had and that it was not dangerous. He also mentioned that Santi’s bump was not a bump but a lesion of the same condition. I was so relieved that he recognized the spots so quickly! A few seconds later, Dr. Patricia Witman (the equivalent of McDreamy"), came and checked the marks and agreed with George’s assessment. She was 90% certain that my baby had “Juvenile Xanthogranuloma” (JXG), a rare and benign disorder typical in babies and young children, that usually goes away in 3 to 5 years and whose lesions tend to disappear on their own, without any kind of treatment. What? What did she say? I was in shocked, happy and upset, at the same time. Glad to hear it was nothing dangerous and distress that our pediatrician’s colleague was right! But that was not the end of the surprising news, Dr. Witman told me that unfortunately, JXG belongs to a family of diseases called “Histiocytoses” where there are too many histiocyte cells in the skin. Normal histiocyte cells are part of the immune system, alerting infection-fighting cells to the presence of foreign material such as bacteria However, some of these histiocytosis were not benign and the only way to know what type Santiago had with 100% of certainty was by biopsy. From that moment on, I was in “auto pilot mode” and I stopped feeling anything. I agreed to the biopsy to be performed right away and also that my baby’s lesions would be photographed for teaching purposes and to have a base line of his condition. George performed the biopsy very quickly and besides the initial stain of the anesthesia shot, Santi did not feel pain. Of course to see my 9 week old baby, laying on the medical bed while crying at the top of his longs was devastating and I had tears coming down from my eyes during the whole procedure. I regretted so much to have told my husband not to come. Once the skin sample was removed, “Dr. O’Malley” closed the wound with one stitch and told us that the results would be ready in 2weeks…more waiting ahead!

Monday, February 8, 2010


Last October, in a very cold afternoon, my husband and I were blessed with the arrival of our little angel, Santiago. The joy and wisdom that Santi has brought to our lives have been indescribable and crucial to our daily dealing with Xanthogranuloma (JXG). At around his 4th week of life, I noticed two tiny pink spots by Santiago’s right eye that did not look like the rest of his regular “baby acne” and a big “red bump” in his head the size of a raisin. After asking my husband and mother-in-law about them (no one remembered bumping the baby’s head into anything), I decided to make a doctor’s appointment. Fortunately, our pediatrician saw us that same afternoon and she agreed that “those tiny pink spots” were not baby acne and told us not worry about the bump. As she has a lot of experience, I did not like at all that she did not recognize the spots right away, but before I could say anything, she told us to wait to have another colleague take a look at them. After a few minutes, the new doctor (whose husband is a dermatologist), came and gave her opinion: “mmm….this look like a skin condition that a patient of my husband had. I do not remember the name of it but it is usually benign and generally goes away by itself by school age”. I almost had a heart attack! What was this lady talking about? Once again, my face must have shown such a horror that before I could open my mouth, our pediatrician told us that she would make a referral to the Dermatologist Department at Nationwide Children's Hospital in Columbus. Before we left, she explained that since the spots were not a life threatening condition, it could take a while until we got in for the appointment.

*My most sincere gratitude to Dr. Gray who has always taken care of  Santiago with uttermost love and excelent medical diligence.