Sunday, March 17, 2013

Back from Texas

We had such a wonderful trip to Texas and thank you all for your prayers. We LOVE LOVE LOVE Dr. McClain. He was so patient with Brian and super knowledgeable. It's amazing, in the last three and a half years of doing this Fred and I have seen that we typically have to direct the doctor, point out certain things and ask LOTS of questions. With Dr. McClain, we went into the room and didn't have to open our mouths and we were able to tell that this man KNOWS what he is doing. He asked us questions and told us what we probably have experienced and what we can expect. He was right on with everything. His communication with us gave us a huge sense of comfort and peace. Dr. McClain did some clinical evaluation of Brian that assessed what Fred and I were most concerned about, and that is neurological involvement. From that clinical assessment it appears as if Brian does have some neurological involvement, but Dr. McClain commented that he really needed to see an MRI of Brian's brain. All of the scans that were sent to Dr. McClain were unreadable. He described them as an over exposed photo. We had CD's of all of Brian's MRI's, including the one from last Friday (March 8th), and we gave those to Dr. McClain. We are hoping it is a better quality than the ones that were sent to him from Sacred Heart. Dr. McClain wasn't sure if there was some technical problem in the sending of the information, that somehow things went haywire and messed up the imaging, or if the imagining that he was seeing was really the MRI imaging that Sacred Heart had taken. We are praying that the CD we gave him will be readable and not "an over exposed photo".

So, here's where we are:
  We are waiting this week to hear back from Dr. McClain. We will either hear that a.) We need more imaging and to get a new MRI taken somewhere else b.) all is looking good and Brian can complete this protocol and be done with chemo (this protocol that Brian is currently on will complete in a couple of months and was suggested by Dr. McClain last March when Brian was diagnosed with Diabetes Insipidus.) or c.) Brian's MRI revealed the need for more chemo and it will be a higher dose of  Cytarabine (also known as Ara-C) and will extend treatment for six more months.

 We are assuming that Brian will probably end up with more chemo and the higher dose of Ara-C based off what we saw with Dr. McClain in his office. However, we are hopeful that Brian will be done with chemo after this protocol in two months. We would really appreciate your prayers for Brian during this time. We kinda feel like anyway we go, even if he has a few more months of chemo, that we see the finish line. And for that, we are very excited.

     We are so thrilled with Dr. McClain and the work he has done for families like ours with a little one with LCH. Brian has now been added to a study Dr. McClain is doing, and Fred and I even gave samples and filled out a questionnaire. We are happy to help with the research and treatment of LCH in any way we can.

    Dr. McClain is so knowledgeable that there is just a huge relief in knowing that Brian is under his care. The research and treatment of LCH is what he does. It's not just something he may have heard about in medical school years ago, but he has spent his life in research and treatment of LCH. HE KNOWS ALL ABOUT IT. (I cannot stress this enough. We've had several frustrating times as parents trying to convince our local doctors to hear us out, only to be given the response of "that's not related to LCH", when we *know* things are not right. To walk into Dr. McClain's office and get validated that what we experienced IS in fact LCH was a huge relief. Not because we want to be right, but because we can RELAX and know that our little boy is getting the best care possible for his disease.) This disease is so rare and some oncologists may never treat a child with LCH, yet Dr. McClain sees hundreds. People from all over the nation and even the world, travel to Houston for their medical expertise. We were told that a great number of people go to Texas Children's Hospital just to see Dr. McClain. We really wish that we could go back to three and half years ago when Brian was first diagnosed and have gone immediately to Dr. McClain, but we can't. Sitting and thinking about the what if's will not change anything. We are thankful that we are with Dr. McClain now. We feel so blessed that we are able to call Dr. McClain Brian's doctor.

Thursday, March 14, 2013

Texas Bound!

We are headed to Houston today to see Dr. Kenneth McClain. Brian's appointment is tomorrow morning. We picked up the CD of last weeks imaging (from his MRI of the brain) and we are ready!!

Prayers appreciated. We will keep you updated.

Friday, March 8, 2013


Brian had an MRI today. It was scheduled for 11:00 AM with check in at 10:00 AM. We went to chemo at 9:00 AM, then headed to check in with MRI. It was horrible scheduling for a child because Brian hadn't eaten since dinner the night before. (He can't eat or drink because he has to do his MRI's with sedation). Of course they were running an hour and a half behind schedule so the poor boy had to sit hungry and thirsty until we went back got checked in, and got his versed at around noon.

  Brian had a loose tooth that was ready to come out and it had to be removed before they could intubate him. The anesthesiologist said she would pull it after they gave Brian Propofol and save the tooth for us. (The anesthesiologist was super great with Brian when we checked in with her and she gave him Versed before taking him back like we requested. She was very patient and engaged Brian in conversation on his level. She even let him play Angry Birds on her phone while we waited for the Versed.)
  When we were taken to Brian's bed in recovery he woke up vomiting blood. It was very upsetting, but after a couple of minutes the nurse reminded us that he had a tooth taken out. It must have bled down his throat during the procedure. Since they had already de-accessed his port we were unable to get him some anti nausea medicine until he was awake enough to swallow a pill of Zofran. Brian already being de-accessed is a result of a whole other story that I will not get into on the blog. Let's just summarize it by saying that in the past I have de-accessed Brian's port in recovery, and Fred and I have an AMA (leaving the ER Against Medical Advice) and a formal complaint under our belt from a recent ER experience at Sacred. We will not tolerate poor care for little Brian. Pretty sure the words we exchanged with the MRI check in nurse ruffled her feathers and she made sure he was de-accessed before we got back there. STRESS. Poor Brian continued to throw up even after we got home. He was fine by bedtime, but it is so sad to see our sweet Brian go through so much unnecessary drama.