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.

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.

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 Change.org 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.

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!