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

Long Overdue!

Sorry for the lack of updates!

Alex was discharged last Sunday. We rushed home and tried to get things put together for Grandpa's arrival on Tuesday. I was able (with the help of Theresa, Alex's nurse) t get the laundry done, the mail sorted, bills paid, house cleaned, supplies ordered and unpacked on Monday. Needless to say I fell into bed early Monday night! We picked Dad up on Tuesday morning and have had a pretty quiet week. Alex is getting back to himself. We really saw him struggle after our Wish trip. We are a few weeks out now and he got blood after being anemic for 2 months and he is getting back to how he was before the trip.  The other thing that has been great is that Alex has gained over 2 kg (or 8 lbs) since restarting his TPN (IV nutrition) in September. We know that TPN is NOT a long term solution. We know as well as anyone the risks that are involved. However, we are SO happy that when needed it can make such a difference.

We are reaching the end of the clinical trial for the EPI-743. We are done with the trial right after Thanksgiving. Luckily, if they determine that we have seen improvements he can stay on the medication. I have no doubt that they will see a huge difference in him!

I am also thrilled with how he is doing since starting the SCIG (immune replacement). While Alex still got sick, this illness did not hit him the way a virus typically does. He recovered quickly and held his own throughout it! I pray that we continue to see his little body fight with the help of all these improved treatments.

Dad is here visiting through Thanksgiving. We all fly out on the same day. Dad will fly home and Alex and I will take off for Stanford. We are only there a couple days this time as we only have a clinic appt and a repeat brain spect.

We are so thankful for you, our family and friends. I know I have not been calling, emailing, on fb as much. Thank you for still checking in on us. I am busy with Alex's schooling, medical needs, taking care of the house and trying to find a few minutes for myself!
Ali

In the Hospital

I really enjoy updating the fun parts of our life so much more then this! I have procrastinated updating because I wish I was talking about all the cool things we had planned this week. Unfortunately, this is what you get!

Alex really hasn't felt great since our trip. We had so much fun, but unfortunately all that fun comes with a price. Alex was really run down when we got back. He was cranky and was running low grade temperatures. He actually had seemed to improve last Sunday and Monday though. On Wednesday, he woke up not feeling well. He complained all morning of not feeling great. He asked to go down  for nap an hour early. He woke up around 3:30 and called me saying I needed to check hi temperature. Never a good sign! His temp was 103.5. I quickly started to throw things together to head to Houston. We arrived at the ER around 9:00. They were ready for us and immediately got things rolling. It still took us a while to get to a room though! They came back and told me Alex's white blood count was VERY high. We started antibiotics and waited to see if it was his port or something else. Yesterday Alex was fever free all day and it looked like this would be a super quick admission. However, Alex woke up with a fever this morning and it has stayed all day.

We still do not know the source of the infection. We think the labs on Wed night were an error and his line cultures were lost so we started over again this morning. He is getting ready to get blood and we have a plan, but his little body isn't cooperating! The plan is to continue anitbiotics for 24 hours once his fever breaks. Then we will stop antibiotics and watch him for another 24 hours. But our 48 hour countdown can't begin as long as he is running a fever! I am hoping the blood will help him tonight and leave more energy for fighting this infection.

The good news is that Alex doesn't feel terrible. We have seen Alex both sick and "scary sick". This is clearly NOT "scary sick". So we sit and wait...

Another fun part of the day is getting started on a new program here at the hospital. It is called the B.E.A.D.S. (Boldly Experiencing and Accomplishing Difficult Situations)program. Alex received a keychain with his name and a turtle representing mito on it. For different tests, procedures, surgeries, ivs, etc he can earn different beads. They started Alex with some beads from past experiences too. Obviously we can't acknowledge every admission, xray and IV Alex has experienced up till now, but we can show some of the big surgeries and tests. Alex's  string is already sporting 36 beads- 8 from this admission and the rest from previous admissions. It is such a neat way to represent all Alex has been through. We will be adding to it each admission.

Thank you to all our faithful friends and family who pray for us and lift us up through the hard times.
We love you.
Ali

A few pics from the breakfast

I was so fortunate to have the help of my friend, Jess Sweetland, who took pictures for us the morning of the surprise. Here are a few to enjoy!

 Alex's reaction upon seeing the limo!

 Alex with his buddies

 The moment he realized we were leaving on our trip!

 The kids enjoying the limo

 Us with ChaCha

 Chillin'

Best Friends Forever

"The Wish"

Alex's actual wish was to sleep with the zebras. While we knew he could not physically sleep with the zebras. He wanted to experience the zoo at night and boy did we get to. The Sleepover program was so much better then we could ever have imagined!

Alex and Kristina

We arrived at the zoo at 4:00 and checked in for the evening. We were greeted by two zoo educators, Kristina and Staci holding a snake. We talked to them and petted the snake for a while and then went in to start working on Alex's treat bag. Dr. Zoolittle, our host, walked around talking to all the guests and teaching the kids magic tricks.

When everyone had arrived they took us into an auditorium where Dr. Zoolittle went over some rules and then asked for some voluteers. Alex was not chosen to go on stage which I think he wound up being pretty happy about! One woman, one boy and one girl were on stage when Dr. Zollittle proceeded to put a Madagascar hissing cockroach on each person. When the boy saw it crawling on him he ran screaming and crying from the stage. The woman wanted to cry, but head her heald up so as not to be embarrassed. The little girl was a champ and stood there with no problem! Then he called new volunteers up who got to eat bugs! Very fun, but no chance my allergic boy was eating anything! At 5:00 we all got on a bus for a guided bus tour through the zoo. By this point we were the only ones left in the zoo (about 40 of us).  The tour dropped us off at camp around six so we could see our tents and eat dinner.

Alex was VERY comfortable!

Once everyone was done with dinner, we roasted marshmallows and made smores around the campfire. The kids also got into costumes for trick or treating and a costume parade. The staff was incredible with Alex. They knew he could not walk long distances (and there was a  lot of walking involved) so they set up a golf cart and his own driver to take us everywhere. That we Bruce and I didn't have to push him in his chair all the way around the zoo. So very helpful and thoughtful! So trick or treating at the zoo is a little different. It takes place in the reptile house and you learn about different animals while you trick or treat. There were 5 stations. At the first station we learned about millipedes and everyone had the opportunity to eat bugs. At the second station we met Ohos, the cutest owl ever. At the third station we learned about a desert blonde tarantula, at the fourth station we got to pet an alligator and at the last station the kids got to play with puppets. Following trick or treating there was a costume parade where everyone won and got a little stuffed animal. Alex, of course, got a zebra!

 Alex the gladiator

Dr. Zoolittle 

 Ohos the owl

After the costume parade, we headed back to camp for ghost stories around the campfire. Alex loved the story of "The Ghost of Eagle's Peak". Once storytime was over, the families had the choice to go on a night prowl or go to bed. It was no choice for us! A night prowl it was! We all loved the time in the zoo seeing nocturnal animals. Alex got to see the hyenas and lots of big cats up and about. Very cool. After the prowl it was to the tent to finally go to bed for the night!

We were awoken bright and early at 6:30 so we could be ready for breakfast at 7:00. bruce and I scrambled to get all of Alex's needs taken care of and all of our things packed in 30 minutes. Then we headed to Elephant Odessey for breakfast!

 After breakfast we got to meet the elephant keepers and watch the elephants get pumpkins which they love! We were able to ask questions and watch two elephants go through their ritual of foot cleaning.





WE left the elephants and headed to the lion enclosure where we got quite a show! We got to watch the lions being fed adn they were extremely playful with each other. One of the guests even got lion pee on him!

Upon conclusion of the lion exhibit our sleepover was over. We took a bus to the front of the zoo before saying goodbye to our new friends. We spent another couple hours finishing up the parts of the zoo we still hadn't seen before heading back to the hotel one last time.

Alex with Kay, his buddy and driver

It was with tears in our eyes that we left our hotel and headed to the airport to say goobye to the trip of a lifetime. There are so many people who helped in putting this together and making this a reality. I will be forever grateful for all the hard work and prayers that went into this week and the incredible memories we will never forget.

Ali

Wish Trip Day 5 and 6

Saturday was zoo day. We planned to go to the zoo for a few hours and then come home before our sleepover.
 The zoo was amazing. We spent a few hours Saturday morning and left having see less then half of the zoo. Here are some pics from the morning:

 Couldn't miss these guys!

 The sweet baby giraffe

 Alex had been begging to see a hyena

 Bug climbing through the polar plunge exhibit

 We ended the morning on the skyfari

When we got back to the hotel Bruce and Alex quickly fell asleep. I packed up some stuff and then sat on the balcony admiring the view!

Next up the sleepover!

Wish Trip Day 4

Legoland take 2...with the camera!

But on our way we decided to stop by LaJolla to see the seals that reside on the beach. Once again I must repeat how gorgeous this part of the country is! I will let the pictures tell the story, but Bug was pretty excited when we parked and immediately heard the barking of seals!

Once we had had our fill of Seals, we headed to legoland for the second day in a row.  There was much of the same...rides, rides and more rides. WE also paied a visit to our friend Renate to thank her for showing us around the day before.

We headed home early afternoon because Alex had begged to try out the water slides at the hotel. Some of you may know that it was only at the ripe old age of 6 that my child went down a "regular" slide by himself for the first time. So to hear him say he wanted to do the water slides i wasn't sure he would follow through. Honestly, I tried to weasel my way out a few times as the air temp was in the low 70's and the pool temp was around 80. Not heated to my liking for sure! But as Alex was sure to tell us al week, "it's MY make a wish". So we deaccessed his port, put on bathing suits and headed to the ice pool! There are no pics of Alex going down the slides bc I was too busy freezing my butt off to take pictures, but one thing is for sure. All our swimming at Mimi's this summer paid off. Bug started on the small slide After a few times of me catching him, he started going down by himself and swimming to the side. So I was able to get out of the cold pool for a few minutes.  Then he decided to brave the big waterslides. They were 3 flights of stairs up and curved down through the trees. They were really fun. Alex and I went down them probably 10 times. I would go first and then be at the bottom to catch him when he came down. After that we raced upstairs to a warm shower! Friday ended with our only "nice" dinner out.

The big slides



The small slide

All in all another great day!

Ali