Alex and Maddy

Alex and Maddy

Wednesday, August 31, 2011

Doing Great

I cannot believe we have only been here for two days! We have been BUSY!!! Alex and I arrived safely on Monday afternoon. Although I was worried I was able to juggle my Bug, a suitcase, a car seat, a wheelchair and two carryons and safely make it onto a monorail to the rental car center and then drive the 30 min to our hotel! Needless to say we were happy to arrive at our hotel. But WOW I was not prepared for the beauty of Northern California. I truly enjoyed the scenic drive from the airport to our hotel. Buggy just wished I would stop telling him to check out the scenery. Shortly after arriving we were able to visit with one of my good friends (Erin) since high school who made the trip up from Southern Cal to visit!

Tuesday I wasn't sure what to expect. All I knew was that we were supposed to meet at the clinic at 9 with Dr. E (the geneticist in charge of the study) and his clinical coordinator, Katherine. After a LARGE starbucks to help propel me through the day, we were off. I must say I have been thrilled with how nice and accomodating the staff here has been. Katherine met us in the waiting room and immediately took us back to a room. We were in clinic for 2 and a half hours! The first little bit was going over Alex's meds and allergies. Then we went over his history. Finally, Dr. E explained the trial and let me ask as many questions as I had. Last he examined/videotaped Bug. I was impressed with how patient they were with both Alex and I and how willing to answer all of our questions. Dr. E also asked us about participating in a few other studies he is doing and offered some possible suggestions to help his liver. After finishing in clinic we headed downstairs to run labs. Then we had a quick hour break to grab a bite to eat before we were off to the hospital for an EKG and Echocardiogram of Bug's heart. We finally finished up for the day at 2:45. We hurried back to the hotel to meet up with our dear friends the Spry's. I have blogged many times about the special friendship Mariah and I have. Mariah and I met online when we thought the kids "just" had food allergies. Her twins (who are just 2 weeks younger then Alex) and Alex were diagnosed with eosinophilic disorders, got tubes and were diagnosed with mito within months of each other. Mariah and I have buoyed each other through 6 years of this journey, but have rarely gotten to see each other in person. Luckily they were able to spend a few hours with us yesterday. We are hopeful that we will have more time together on subsequent trips. Then Erin and I were able to spend more time grabbing dinner and chatting late into the night before she had to head back home. I was so blessed to have these two special friends take the time to come to Stanford to make this trip easier for Alex and I.

This morning we had to be at the hospital at 8 for a special test called a Brain Spect. It was difficult for Alex. I was so proud of him as he did a GREAT job. We had been told to prepare for him to have to lay still for 25 min. however, they failed to mention the first part of the test. Alex and I were taken into a holding room. he had to lay on a bed with the lights out for 30 min as still as possible and he wasn't allowed to talk to me or me to him. Then they injected him with the radioactive tracer before he had to lay still and quiet for another 30 min. Finally he was taken to the scanner room where he was strapped to a table and unable to move at all for the final 25 min while they did the scan. Well, anyone who knows Alex and I knows being quiet for an hour and a half is NOT easy!!! While this wasn't a painful or scary test, it was hard. I was so proud of my mature, brave boy who did fantastic. When that first scan was done, we had a break until 1, when we had to be back to repeat another 25 min scan (but did not have the hour lead up). I was lucky to get to spend some time talking to the radiologist who pioneered this test and the use of studying the function of the mitochondria in the brain. Once again he was so nice and forthcoming and willing to answer ALL my questions. Once the second scan was done, Alex and I came back to the hotel and crashed! We were still tired after waking up and decided to get room service instead of going out to eat.

Tomorrow is the big day! It will once again be quite busy. He has his first dose of the medication, 3 separate sets of labs throughout the day and another EKG of his heart.

I have been very happy with the care here and excited for the prospects of what is to come. I have felt you all lifting us up this week as I have been calm and at peace throughout. We are so lucky to have so many friends and family who say faithfully love us and pray for us. I ask specifically for prayers tomorrow that Alex does not have an allergic reaction to the medication. I will update tomorrow to let you know how he does!

Sunday, August 28, 2011

A Roller Coaster of Emotions

Tomorrow is a day we will both celebrate and cry. Tomorrow is a day we embark on a journey that we hope will change the course of Alex's life. Tomorrow we will also celebrate Samuel's 5th birthday without him.

Anyone who has spoken to me over the last week can tell you that my emotions have been raw and close to the surface. I am sad. Sad for my best friend, sad for myself, sad for Buggy. We all miss Samuel. We all grieve. And right now it is just a little harder then it has been for a while. There is not a day that passes in our house when we don't talk about Samuel at some point. Alex longs for his best buddy daily. He so desparately misses having someone "who is just like him". Someone who went through the same experiences and who helped him through hard times. I miss the little snuggle bug who always crawled up in my lap and who begged me to lay with him (but only after Mommy had left the room). I miss that sweet voice calling my name.

But tomorrow, while sad, will also be a day of celebration. I do not for one minute find it a coincidence that Alex and I will fly to Stanford on Samuel's birthday. I wholeheartedly believe that Samuel is watching over Alex. As Missy has told me all week there is no place Samuel would rather have us tomorrow then someplace doing something to try and help Alex feel better. Alex has already been sure to let me know that we will be having dessert tomorrow and singing Happy Birthday to our Buddy.

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...

Please pray...pray for my emotions, for Buggy's safety (specifically no allergic reaction), for our travel.
Thank you for being there to celebrate our joys and hold us through the sadness.

Sunday, August 21, 2011

Not much to report

I figure I owe you an update though!

Alex and I are back in the swing of our "normal" schedule. We are 2 weeks into our new school curriculum and we are both REALLY enjoying it. It is much more well rounded (vs history based) then our past curriculum. I think Alex likes the different subjects and not having it be so monotonous. He says, "its fun and I really like computer, science and reading". We are also gearing up for another year of Cub Scouts. Bug is really looking forward to seeing all his friends from his Den again. He is also excited to sell popcorn again.

Alex and I leave next Monday (August 29th) for California to start the trial. We are both excited and anxious. We would appreciate some extra prayers for safe travels and for Buggy to do OK with the medication. We will be there until Friday undergoing testing and appointments. We are hopeful to meet up with a few good friends while there as well.

On a not so bright note....Buggy continues to struggle. He is losing weight and having quite a few days where he isn't feeling great. The Doctors and I have been in close communication and we are all relatively sure we know the cause of the issues. Once we are home from california we will most likely be making a trip to Houston to try and figure out a new plan. We had thought we would be heading there before CA, but it was decided we shouldn't rock the boat before going to Stanford.

Thank you for your continued love and support.

Wednesday, August 10, 2011

More Pics and Good News

As you can see we have been having fun in the pool! I will let the pics speak for themselves. We also got Alex's 7 year pics done. I posted a few so you could see a preview! Look closely, something is missing!

The next few weeks are going to be CRAZY!!!!! Sometime next week Alex will be admitted to the hospital in Houston. There is some concern for how skinny he is and how puny he has been acting. We will be inpatient for 4-5 days while we try and come up with a plan to get him back to baseline.

Then on August 29th, Alex and I will fly to California to begin the new medication. We are so thankful to the team at Stanford and in Dr. K's office for working so hard to get Alex in the trial and set up so quickly. We will be at Stanford for 3 days (and travelling for 2). In that time Alex will have a clinic appointment, a heart eval, 2 brain scans and get his first dose of medication. Assuming he does well we will fly home on Friday and continue the medication. The next few months will be a whirlwind of travel back and forth between home, Houston and california, but we are so hopeful we will see good results from this medication and it will all be worth it.

Thank you to all who continue to pray so fervently for us.

We went on a dolphin watching cruise and saw a ton of dolphins!

Wednesday, August 3, 2011

Not Feeling Great, But Still Having Fun

I haven't updated in a week so I thought I would give a quick update on the last few days and some pics!

Alex is still not himself! He has been pretty puny. Mostly wanting to stay in bed and watch videos and play his Nintendo DS. Mimi and I have been "forcing" him to get out and have some fun the last few days with lots of quiet time in between. We have seen friends, been swimming and riding go-karts. I'll let the pics tell the story.

Alex and his Cousins

Want some Seaweed?

Sand Monster

Beach bum

At the creamery with Mimi and PopPop

Mommy's Angel

Buggy and Cayman

PopPop and Bug leading the Race

Buggy DID NOT like driving himself!

Win #2

Where Bug has spent most of his time!

In some other exciting news....I had mentioned a clinical trial for a new medication they are using with some Mito patients. We just got word today that Alex has been accepted into the trial. Thank you for all who prayed for us. We are very hopeful for what this may mean for our Bug!