Saturday, March 31, 2012

Everything Changes...

Well, Thursday at 8:30 AM we met with Dr. Parmley and we have been spinning since. So, here's the scoop...
    As I mentioned earlier, Brian has been diagnosed with Central Diabetes Insipidus. This diagnosis is considered a relapse for Brian's Langerhans Cell Histiocytosis (or LCH). Dr. Parmley said there is a sense of urgency to get Brian's LCH treated. Those were his words...a sense of urgency. (The Holy Spirit totally took over and gave us self control because we sure wanted to say, "Well, there sure wasn't a sense of urgency last week. We couldn't get anyone in your office to help us!) As Dr. Parmely was telling us what this meant for Brian, he mentioned twice that he knew we had been communicating with Dr. Schwartz. I wanted to scream, "No, we have not. This is new news to us!!!"  We had not been communicating with anyone other than Dr. Kummer. He is Brian's Endocrinologist.
   So, we learned that Dr. Schwartz has been in contact with Dr. Kenneth McClain in Texas. Dr. McClain is the leading person in research and treatment for LCH. The protocol that Dr. Schwartz is going to follow to treat Brian is straight from Dr. McClain. On Monday Brian will begin a new regimen of chemotherapy. Brian will have chemo Monday -Friday for one full week each month for 12 months. He will have Vincristine and Cytarabine on Monday and Cytarabine by itself on Tuesday, Wednesday, Thursday and Friday. Then he will get a three week break to give his counts a chance to recover before he gets hit again.  Please keep our family in your prayer as Brian begins the chemo journey for a third time. Although this was blow, it was somewhat expected. (Well, I had suspicions, Fred was totally caught off guard.) My suspicions came from the fact that I just couldn't understand how Brian was considered OK if he was still having symptoms of damage from the disease (the DI) while on treatment. Brian's last dose of Vinblastine and Predisnolone were just three weeks ago. So, if he was still on treatment he would have received his next chemo this past Thursday (two days ago). His body didn't know he was "off treatment" yet. All that to say I didn't understand how Brian could be getting symptoms if the disease was under control. If the disease was not under control than more chemo was inevitable. So, here we sit. Brian had one weekend of "No More Chemo". We are thankful to God for the gift of getting to go to Orlando and Legoland when we did.
    Also, we learned that Brian does in fact have multi-system involvement. I am not sure if you remember but several posts back I put that he had it, then I put I obviously didn't understand LCH, because he doesn't have multi system, but single system. Yeah, that is a perfect example of our ups, downs and all arounds. Speaking of ups and downs, I have in the past lamented about Dr. Parmley. I take it all back. I have a new respect for him. Nothing about him has changed, but my perspective is different. I understand him now have a great appreciation for his minimal, no frills, straight forward ways. He's not interested in playing with Brian or getting to know him, but he is concerned about his health. I am happy with that.

That's the update. If you would like to read the journal about Brian's last couple of days then read on. It's just Mommy ramblings to keep an account of what we have walked through and how God has worked in our life.

We were sent on Friday for an MRI, skeletal survey, blood work and urine test. All these tests were ordered by Brian's doctors- Dr. Parmley, Dr. Schwartz, and Dr. Kummer. Getting everything straight at each location is a science. Unfortunately we know our way around the hospital and it was no trouble.

At the Diagnostic Center Brian had his scans. He is so brave. I took a picture of him because I wanted to show his siblings exactly what Brian has to go through. It's alot on Brian. I hope it will help them see why he behaves the way he does sometimes. Brian has a lot in his life that is out of his control. And he HATES it. No matter how much Brian hates chemo, doctors, hospitals, needles and medicine, this boy has such a great attitude. He smiles and is polite to everyone. He is such a sweet boy. I have noticed since Brian was nine months old that he just has a great personality. He has a special spirit about him that is just a joy to be around. People are drawn to his smile. He has never met a stranger. We've said that since he was a baby. The week Brian turned one year we started attending a new church. We put him in the nursery and I was kinda hesitant as to how he would do. When we went to pick him up the lady in charge had declared him her boy. She fell in love and said he was just amazing. When we moved one year later she was so sad to see him go. Every time we go back and visit she likes to say hello and give Brian a hug. She always sweetly says, "I know you probably don't remember me, but I sure remember you! You were the happiest baby ever and I loved having you around!!"
     God has given Brian a special grace to get through these things. He has something about him that others notice. The tech doing Brian's scans remembered him from a previous appointment. She laughed and said, "Oh, I remember you. You're the one that told me the names of all your bones." In our Classical Conversations group we had been learning the names of the bones in the axial skeleton. The tech was impressed that a new five year old was able to tell her Cranium, Vertebrae, Ribs, Sternum.

   After his scans we headed down to the ground level for the MRI. I believe it was around 10:20 ish when we checked in. Brian had not eaten anything since dinner the night before. Because of his D.I. he is not able to go without drinking anything for that length of time so he was given Gatorade, but was cut off from that at 9 AM.
   It was after 1 PM before they took Brian back for his MRI. For the life of me I cannot understand why a tech would see a five year old and a two year on her list (I know she knew both where waiting as she talked to us to let us know they were running an hour or so behind) and then take a lunch break. If the two year old and five year old can make it without food from dinner the night before I think you can work through lunch and eat as you go! I understand that a tech needs to eat too, but my goodness, let's try to schedule the little ones for the first appointment of the day!!
   OK, I will get off my soap box, because I could go on and on and on and on and get the point.  If Sacred Heart wants to become a leading Children's Hospital in the region they need to get some Mommies on their panel for planning and organizing. They do a very poor job of putting the children first.
   During our marathon wait with no food (we didn't want to eat in front of Brian) we got to meet a fellow LCH local. They were waiting for an MRI too (the above mentioned two year old). I am so thankful we got to meet Kara and Kohlton. I will have to tell the story of how we got connected because it was God's hand for sure. Right now the kiddos are starting to wake up so I will post that story later.
Brian after his MRI, still waking up from sedation.


David and Kate said...

Oh Carrie... there are no words. We are PRAYING!! Love to you all!


nancygrayce said...

Carrie....I have nothing but admiration for the way you are able to even journal about this. You and Fred have to be under tremendous stress and we are praying for strength for you and healing for Brian. Obviously, God is supplying you with grace!