One Year....

One year ago today we walked into a nightmare that I will never forget. One year ago today, I watched my baby spike a fever, start hallucinating, having seizures, bleeding and winding up on a ventilator over the course of a few hours. It was the scariest day of my life, a day that I can still picture so vividly in my mind.

I can not believe it has been a year. In some ways it seems so much longer and in some ways it seems like just yesterday. This last year we have seen some major changes in our care for Alex and we have seen him blossom in so many ways. In my mind, December 19th will always be Alex's second birthday. So many angels were at work on this day a year ago to work and keep my sweet boy safe so he could be with us longer. I will forever be grateful to the staff at Cook Children's hospital who worked so incredibly fast to get Alex airlifted to Houston. Once we arrived n Houston, Esther, one of our "regular" nurses quickly recognized that Alex was not well. The residents on call, Dr. Nguyen and Dr. Doan were two who know us extremely well and made the immediate decision send him to the PICU. To Dr. Pacheco and Dr. Koenig who were in constant communication making sure everyone knew exactly what needed to be done and what Alex's history is. And finally to Dr. Thapar, the PICU attending who was by Alex's side for hours and acted quickly and aggressively to save Alex's life. I am blessed every day with the joy of being a mother to this amazing boy. What a gift I have been given!

Alex at the beach in Half Moon Bay

Alex and his best friend, Walker

What a difference a year makes!

I have been quiet over the last few weeks...After returning from Stanford, I came down with a sinus infection and asthma flare that left me without a voice for a week and still recovering 2 weeks later! I am FINALLY starting to feel better. After a rough few days, Alex and I got back into the swing of our regular schedule. We have been hard at work at school and therapy. We have been preparing for Christmas. We had a fun 2 week visit with Grandpa. We are looking forward to having Mimi and PopPop with us for Christmas. We have enjoyed having Daddy home from work for a few days. Alex continues to do well on his EPI-743 and SCIG. Overall, things are going well.

At this time of year, I am especially grateful for the incredible friends and family who walk this incredible journey with us. Those of you who share in our joys and carry us through our sorrows. We are so thankful for the blessing you are in our lives.

Ali



Amazing News!

13 weeks ago today, I posted this:

The rest of the roller coaster has been in regards to Alex, his less then stellar health these days, and the hope this medication brings. I cannot begin to explain to others the emotions that come with being the mother of a child with Mito. Not only is it a disease that could take my childs life at any moment, but it is also a disease that has no way to fight it. With cancer you are given odds and a plan of attack. With mito you have to sit back and watch your loved one fade away while you do nothing. It is a helpless feeling. Enter EPI-743...This medication may do nothing for Alex or it could change everything. It is so hard to not be hopeful and so scary to let our hopes rise and possibly have them dashed. As I have watched Alex struggle over the last 2 months, I have worried. He doesn't have his usual spunk, he is losing weight, he doesn't feel good. And so I hope, I hope for a fighting chance. A chance that starts tomorrow...

I sit here today unable to believe the difference we have seen! Alex is full of life sometimes so much so he drives me crazy. He is feeling good. he has put on weight. I came into this trial with hope, but our realistic expectations were that on a cellular level this would make a difference. We did not think we would see the visible changes we have seen. Alex had his repeat brain spects and the results are incredible! Alex's first spects showed "diminishement" or problems. The scans done yesterday show a 50% improvement. This makes Alex one of the best responders to the drug. We are amazed. These results validate the clinical changes we have seen and give us so much hope!

Dr. E thought he walked into the wrong exam room on Tuesday! He was so happy with the changes. He does feel like we need to satrt Alex on a medication to help his liver. Him and Dr. K will discuss doses and work on getting that going. We will need to come out here a few times a year to follow up with Dr. E unless the FDA changes there requirements, but we are allowed to stay on the medication!!!

In other news...We received some news from the genetic testing we had done in July. We did not get as much information as we had hoped. Dr. K does believe we have found the cause of Alex's seizures, but not much else.

Please pray for safe travels for Alex and I tomorrow.
Ali