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

Happy Thanksgiving

How do you so Thank you when your life is so full of blessings?

Top 10 things I am thankful for:

#1- My Sweet Buggy. Almost a year ago we almost lost our precious boy. I am so THANKFUL everyday for his sweet voice, his kind spirit, his quick wit, his joyful smile, his unwavering faith, his incredible bravery. I treasure each moment I get to share with this amazing child.

#2- My family who always steps up. Whether it is Mom jumping on a plane to be by our side when Bug is sick or Dad helping us when times are touch, or countless other relatives who support us, our family is ALWAYS there for us.

#3- My friends- I have some of the most incredible friends around the country. I have been so lucky my whole life with my friends. My friends are the ones I lean on. They are the ones who get the phone calls full of tears and full of laughter. I have friends from high school, college and motherhood who are willing to reach out and see how we are doing. Friends who understand that sometimes I go months without calling or emailing when times are hectic.

#4- Doctors, Nurses and Hospital Staff- I am more than THANKFUL that 4 years ago our path led us to Children's Memorial Hermann Hospital. I am continually amazed at the care and LOVE we find there. Alex's life is not easy and yet the staff at CMHH make it so much better. Alex is not only cared for physically, but his well being and chilhood is always considered. He is surrounded with love and kindness. Dr. Koenig, Dr. Pacheco and countless others are always tryign to improve Alex's health and Quality of life. There is always a volunteeer to play with. His "girls" (both nurses and child life) are always willing to do things a little differently so Alex can feel safe and secure and happy. Even the cleaning ladies go out of there way to say hi and see if we need anything. CMHH truly is a second home to us and we are so fortunate for that.

#5- Our "help" at home- First and foremost, Theresa, who has been our faithful nurse for over 4 years. She puts up with the craziness of th Beckwith clan on a regular basis. She has to deal with our crankiness and exhaustion. She is my right hand. I am forever asking her if she remembers something (because I have the world's worst memory, except for my mom :)). She keeps me on track with appts, supplies, household goods, prescriptions, etc. When I am annoyed with Bruce or Alex or someone else it is Theresa who has to listen to me vent. I am so thankful for her dedication and commitment to us. Then there is Liz, our beloved OT who has been with us for so long. She started working with Alex 6 long years ago. She has been through so much with us. She loves Alex and is able and wiling to work with him no matter what the situation or mood! Dr. Kristy- Last March Alex was at his lowest point emotionally. I was scared for his well being. He was scared, angry, sad. That is when we first walked into Dr. Kristy's office and our lives were changed. She is Alex's psycholigist and savior. I don't know where we would be without her. Our time with her has been nothing short of miraculous. Alex loves her and we will forever be grateful for the love and compassion she shows. Last, our amazing pharmacy and DME. Our compounder Stacia has been the only person to EVER make Alex's medications. Because of his allergies medications have been very difficult. Stacia has been relentless in finding and making safe meds. Neena and Michelle- Our sweet ladies from Optioncare who have to put up with harassement from both Theresa and I on a weekly basis as we track down labs and supplies. They are always so gracious and kind.

#6- Our awesome church family. They pray for us and welcome us back whenever we are able to make it. Over the years they have been willing to make so many accomodations so Alex could attend Sunday school or VBS.

#7- I am thankful for Bruce's Job. While it is certainly been a challenge to adjust to a new income and Bruce communting an hour each way to work, I know how many people are still unemployed.

#8- I am thankful to the Make A Wish Foundation of North Texas for making Alex's dreams come true this year. Our trip to San Diego was so incredible. So many people worked to make that week magical.

#9- I am thankful for research and new treatments that have made such a difference for Alex!

#10- The power of Prayer. I have been awed and amazed by how many people pray for Alex all over the country. I believe that those prayers make a difference and will continue to in my sweet boy's life.

I am sure I have forgotten someone or something...As I said at the beginning, How do you give Thanks for SO many blessings. I hope our family has in some way blessed you with our friendship and love. I know you have blessed us.

Have a very Happy Thanksgiving!
Love,
Ali