Joshua

Since birth Joshua had this little "thing" he would do. Sometimes it sounded like a laugh, sometimes it sounded like a cry. People would actually ask us, "What is he doing, is he laughing or crying?" We always replied, "we don't know, if he is smiling... then we guess it's a laugh." It was so easy to overlook, not just by the doctors but by us as well. At his one year well check up, I described this repetitive behavior and asked the doctor what his thoughts were. He said probably just anxiety. Yes, we did think, "What could a one year old be anxious about?", but it just didn't seem like that big of a deal. By 18 months, what we referred to as his little "tick" had become more frequent. So we asked another doctor (same practice) what his thoughts were. He seemed not so much alarmed but at least curious enough to ask us questions about when, where, and how often. Still we weren't too worried. As far as we could tell he was healthy in every way, meeting each milestone at or before the 'average' child of same age.

By his two year well check up, we had viewed a story by Dateline NBC that followed a little boy named C.J. Soeby, his mom Lisa and his dad Jon on their journey to get help for their son. Their sweet son had been diagnosed with a hypothalamic hamartoma, a rare brain tumor. They had no success finding a doctor in the USA who would use an approach that was being used successfully in Australia. Eventually, their journey led them to a place of hope down under. Typically, this type of tumor would be approached via the shortest route from underneath. This Australian doctor was taking the longer, more dangerous route and had operated on several patients going from the very top down and it was working. This wonderful doctor's last name is Rosenfeld. We watched with our jaws dropped as we quickly realized that some of Joshua's behaviors and "ticks" were exactly what we were seeing on TV. At his two year well check up we saw the same doctor that we had seen about 6 months earlier. We wanted testing and he actually mentioned something that most people have never even heard of..."...sounds like gelastic..." my heart sunk. I had already absorbed so much from the support group's website that the Soeby's were a part of - HHUGS. He scheduled an EEG, it came back abnormal. By this time, I had already been emailing the wonderful lady we saw on Dateline, Lisa Soeby. She said to push for the MRI. I didn't have to do too much pushing, but I did sob as I asked for it. Joshua's doctor referred us immediately. We had the MRI on a Friday and the Tuesday following we had already set up an appointment with a neurologist in our health plan. He was two hours away.

I picked up his MRIs on Monday so we could take them with us the following day. The HHUGS website offered examples of the 'Real Deal.' I searched through the pages of Joshua's images by window light at Grandma's house, so I could find an image that was the same "view" to compare with the one I printed from the website. I found it, grabbed the printed image and my hands began shaking uncontrollably. I knew our baby had HH. Josh kissed Grandma good bye and he we headed home so he could take a nap. The phone rang at home and it was his doctor, he had just received the results of the MRI and it was fine. I was anxious to see the pediatric neurologist the next day and show him the images so he could verify what I was seeing or not seeing. We drove two hours to see the pediatric neurologist the with MRI images in hand. He actually gave a smirk when I said had a question about one image in particular. Granted, I am not a radiologist but I can compare two pictures and find the similarities and the differences. We called daily several times a day to see what his read on the films were. He had sent Josh's MRIs to a local radiologist and after a week of continual calling and leaving messages, his nurse called and said that the radiologist said the resolution was not of good enough quality to know for sure. Luckily, the same imaging company had just opened a new, state of the art imaging facility local to us. We had another MRI done two weeks to the day of the first one with a 3T MRI machine. It offered us 3 times the resolution. The people there were wonderful. We left a little after office hours and by Monday they called to let me know the neurologist we had seen previously had the results and we might want to call. I did and after leaving a message AGAIN, the doctor called me back, and in a cold, uncaring tone he told me that my 2 year old baby had a hypothalamic hamartoma, he said it was a benign brain tumor associated with epilepsy and there was nothing we could do to treat it and surgery was not an alternative for this type of tumor. We had seen the Dateline piece and joined the HHUGS support group. By this time (February 21, 2003), the Soebys had spearheaded a campaign to bring the good doctor Prof. Rosenfeld to teach the surgeons at Barrow Neurological Institute his novel approach to resect this horrible tumor. Dr. Rosenfeld was actually in Phoenix, Arizona, when we got the definitive results about our son.

Joshua had surgery at Barrow in Phoenix on June 3, 2003, we returned home early morning on June 19, 2003. Our little guy is recovering nicely and is taking no medications at all. He has no seizures, he listens, he is not beating us up, he is happy. He pretend plays now, before he never had the concentration to do this. Everything that was Joshua before his surgery is still Joshua, just without the extreme bad behaviors.

Initially Dr. Rosenfeld's approach did not make sense to the physicians in Phoenix and they are some of the best in the world. After research, observation,and evaluation the doctors at Barrow in Phoenix felt compelled to learn the microscopic dissection that made Dr. Rosenfeld's approach unique and successful. It is hard to look success in the face and remain uninvolved. The team at Barrow is recognized worldwide for a reason. It is through research efforts (that are by and large non-profitable) and the willingness to accept that no one has all of the answers. I experienced the compassion first hand for my family and my son. They just want to help. They really care. Thank God for Prof. Rosenfeld, thank God for the Soebys (and all those who came before), and thank God for Dr. Rekate and the wonderful HH team at Barrow Neurological Institute of St. Joseph's Hospital in Phoenix.

Update 

Two years ago today Joshua's miracle came to pass when God chose all of you to perform his perfect miracle for our precious little boy. His last seizure was during the preps for surgery. We prayed for more faith and our Sweet Father heaped it upon us... and continued to pour out His love on us by finding each of you! Today we celebrate the 2 year mark since Joshua's surgery and his last seizure prior to the miracle that God performed through each of you. "The Lord is near to all who call upon him." Psalm 145:18. We called and our Lord answered with all of you. I am so flooded by such a deep indwelling of love for each of you. I can't describe how much I love each of you but oh how I wish you could feel it, physically feel it. We have claimed & BELIEVED for a complete healing through God's perfect will before June 3rd 2003, we certainly did on that day two years ago and we haven't and won't stop claiming it, ever. Best of all, through this trial, God taught us not only how to believe in Him but to BELIEVE Him. Joshua is so happy and smart. He has a way with people; he brightens even the grumpiest person's day. He is so full of energy, compassion and love. He is so happy. Best of all he loves the Lord. Oh how this child loves the Lord!! After we returned from Phoenix our church's paper wanted to do an article. The guy who volunteered to write it was a professional journalist. When he interviewed me for the article I wondered afterward how he would make anything of it because I felt like a babbling idiot (kind of like now). He wrote such a beautiful article and I still cry when I think of one line he quoted from me which was, "He holds my hand now...", that's HUGE you guys. It brought me to tears of joy the day I read it and it still does at the thought of how far through God's grace we have come. He never would hold anyone's hand before surgery; he was too busy running away to grab things and tip them over or knock them down. People would stare. He was so destructive before. Oh how I will never take hand holding for granted, it's a big deal. He has always had this little gleam in his eyes that was made from his soul's sheer delight of just living. It was so hard to see that gleam get blurred when he would be aggressive or seize. Each of you work so very hard, and I know some days seem much longer and heavier than others. Please know this, I have prayed for you and will continue to do so. Please know, even now... and forever and ever... my gratitude and sincerest appreciation overflows. Oh how each of you have blessed our family! Tuesday Joshua is getting photos taken for a print ad for Dr. Shapiro, he runs our local 3T MRI facility. Getting the proper diagnosis is always important if you want to get help, for us it was more than help it was a cure. As with all of you Dr. Shapiro has a special place in our heart reserved for no one else. And likewise, as we have told him, I would like to remind each of you that there is nothing, God willing, that our family would not for any one of you if it is at all possible. Anything... if you want me to find some place in Phoenix that delivers chicken soup if you have the sniffles, I'll do it. I literally mean anything. I love you each that much and the role you play in helping so many others doesn't go unnoticed, and certainly it doesn't go unappreciated. God will provide your strength & I will always cheer you on.

On behalf of all of us (Tim, Emma, Josh, & I) - we love you,
Lisa