Phase I - Phased Out

We have thought long and hard for weeks about Tynan's options.  We have cried ourselves to sleep, we have asked questions, and we have prayed for answers. The answers we heard, from the doctors, were that Tynan would be the first child in the US to receive this treatment. There are no statistics; no failures, BUT no successes either. They do not know what amount is safe to give him so they will be guessing.  Phase I is only for research purposes, and is NEVER intended to cure.  IF you start Phase I, he will start to "shut down" within about 2 weeks.  We were told several weeks ago that his kidneys were functioning at about 60% and causing his high blood pressure, which will only get worse before any good can come of this.  St. Jude has the same study to offer, and MD Anderson has other Phase I studies as well; however they are just that, a study.  So the decision, as hard as it is for a parent to make, was that we can not bare to see Tynan used as a guinea pig.  Tynan has already begin to express resistance to clinic, the nurses, the doctors, the procedures, to everything.  What use to come easy to him is now what he dreads most.  He has to be held down by two nurses while a third nurse accesses his port.  He kicks and screams at them; and rarley takes his medicines without a fight.  This is all weighs heavy in our hearts and contributes to our decision.

He is an angel of God, and deserves better; deserves to be here where he is loved and where he can make the most of his last days, weeks, or months.  He deserves to smile, and play, and walk, and run among those who will give him all that life has to offer. Phase I will not give him that.  God gave us our miracle in September; with our transplant. He gave us time. Time to love Tynan and care for him, be a family, and enjoy him every minute of every day. 

There may have been a sliver of a chance; however there is also a sliver of a chance that on a rainy day you will walk to your car and get struck by lightning; and even those chances times 10 are far greater than the chance that Phase I may have given Tynan. There is always a chance, but the doctors give us no hope that this could ever work, not now.  We have participated in every study that has been brought before us; in hopes that one day they can make heads or tails of things and that not another child will have to endure what Tynan, and so many others just like Tynan endure for months and years at a time. 

We continue to struggle with his medications.  He is on 4 antibiotics, chemo, steroids, high blood pressure med, a pain med, & an anxiety med. This just makes for some really moody days, manners are out the window on most days, BUT then there are always the moments that melt your heart.  We don't know how much more time God will give us, but we will do our best to make the most of every day.

We talked to Tynan about his situation, since he often asks why we cry. We let him know that it looked like Jesus had chosen him to be one his angles and asked how he felt about that. When he replied, with fear and said, "I'm just a little boy, I will be all alone;" we reminded him that he would NOT be alone and that those who have gone before us would be there to help him through, and to love him, until mom and dad could join him;.  His first concerns were, "Who will take care of sister?" and "Who will be my dad?"  Speechless as I was, I said to him, "You could probably pick anyone you wanted, they would be lucky to have you."  And his reply was, "Well, then I guess I'll pick *Bodacious"  As the conversation went on, he took a deep breath and said, "I don't know why, but I'm so happy now." And I asked him again if he was scared of heaven and he said, "No, who else will I see in heaven."  He now talks of heaven often and refers to himself as Baby Bodacious and makes reference to..."when I get to heaven....."

We know that our faith will carry us all through as we know that Jesus has been present in Tynan's life since the begining.  Tynan tells us that he speaks to God and says random things that only God could relay to him. When Tynan was in the hospital for his transplant, he was looking up and beyond the ceiling, when Tia Norma said, .  In January Sykora, Tynan and I were sitting at the table talking about New Years resolutions, and he said, "Mine is to go to church every Sunday." This was just 2 weeks before we found out that he had replapsed.  The night we got the call to confirm his relapse, I layed in bed with him and said, "I just want to hold you forever and ever."  He looked up at the ceiling and said to me, "But we all have to die one day."  A few weeks later, watching Smurfs at the hospital, I was mimicing Gargamel talking to a butterfly, and I said, "fly, fly, fly (I turned to him and as our eyes met, I continued), can you fly?" Tynan looked right at me and said, "nooooooo(with a shake of his head), but Jesus will help me fly.......when I die, Jesus will help me fly."

We know Jesus walks with our son, and loves him just as we have been taught, as the bible says, and as we believe.  God is Great, and we thank him for every extra day, for every smile, every chuckle, every thank you, every I Love You, for every good 15 minutes in a day, and even for every sassy remark and every fit he throws.  God has also blessed us with an abundance of wonderful, and generous people, who who have given Tynan countless opportunities.  We thank him for those who were once strangers, but have unselfishly sacraficed to help us fulfill Tynan's dreams.  We thank him for our friends and our families, who continue to be our backbone, with their support, faith, and love.

Thank you all for your love, prayers, and continued support. This has not been an easy decision, but we can not hang on to Tynan for fear of the pain that we will feel when he starts his party in heaven. 

THE PARTY'S NOT OVER

*Bodacious was a rodeo bull and was known for one particular trick that resulted in many a broken face for the riders. It involved him bringing his rear up with his head to the ground, forcing a rider to shift his weight forward. Bodacious would then lift his head up full force, smashing the rider's face.
In 1995, rider Scott Breding tried wearing a hockey mask. However, this failed to protect him adequately. Bodacious headbutted Breding, breaking his nose and bursting his eye sockets.
A few days later, Bodacious was retired from professional bull riding forever. In 1999, Bodacious was inducted into the ProRodeo Hall of Fame and many know him as "the greatest bull to ever buck."^[3]