Update 10-11-10

I thought about titling this post AHHHHH, because that sums up our last week, but it is also an update so here it goes.
  Brian, out of no where, started drinking an excessive amount of water and/or juice about a week to ten days ago. He would wake up in the middle of the night several times requesting ice water and would be totally saturated through a pull up and through his PJ's each time he woke up. Throughout the day he would be going to the bathroom every thirty minutes to an hour. We knew something was not right and started looking up what it could be. (I know doctors hate this, but you really can get some handy info from the internet if you check your sources.) After we talked with the oncologist on Wednesday and looked at Brian's labs(which were suspicious), we were scheduled to do a six hour water deprivation test with a  pediatric endocrinologist. We (including the two doctors) were fairly certain that Brian had Diabetes Insipidus.
   The test meant that Brian was cut off from food and water from 2 AM onward early Friday morning. His appointment wasn't until 8 AM and the test lasted six hours. Every two hours they took his blood, urine, weight and blood pressure. (This also meant that our other three kids were with one of our friends the entire day. She picked them up at 7:45 AM and took them to her house to play with her four kids for over six hours. She is wonder woman. It didn't bother her a bit! She handled it sooooo well. They even made cookies together. It was wonderful to not have to worry one second about our other three. Now, our friends house...it didn't fair as well as she did. The seven kids had tons of fun. Thanks Joyelle!)
  Back to Brian. The poor boy was super wiped out because he was all worked up about having his port accessed and was hungry and thirsty. It was a long day. Things weren't looking so good the first few labs they sent off but by the end of the test Brian's kidneys appeared to be concentrating his urine and all his levels were looking better. He wasn't diagnosed with DI, which is a HUGE praise as it is permanent. We've been told that if Histiocytosis has affected his pituitary gland causing the DI, that the damage is permanent. Some Histio symptoms can come and go, but this damage to the pituitary gland would be irreversible. We are THRILLED that Brian has not been diagnosed with DI, but we still have some concerns and are not totally satisfied with the answer. We were told that some kids just get into the habit of drinking too much and just think they are thirsty, but they are drinking out of habit. Both Fred and I know that this is not what is going on with Brian. His thirst is not attention seeking or a habit that he slowly acquired. He out of no where in one day just could not get his thirst quenched and has drank around the clock ever since. After the test we've restricted his fluids but he still acts thirsty all the time. He will even offer to drink milk if we tell him no water or juice (he's not a big milk fan). Anyway, we are still working on restricting his fluids but trying to find out what is going on. It's not normal for Brian.
    Today we had a MRI of Brian's brain to determine if there is any evidence of the Histiocytosis in the brain. We do not know the results of this yet, but hope to by the end of the week. The findings may change our course of action with the drugs he is using and the frequency he takes them.
   Our morning started off a little wacky as Olivia woke up complaining her tummy was hurting and Brian was scared to death and wanting to be held. If you access his port he thinks he is getting chemo. So, to tell him that he wasn't getting chemo today didn't help much. One of our friends was coming to watch the other three kids today while we took Brian to the hospital. She is so wonderfully helpful that she does Ansley's and William's school work with them so I don't have to do it later in the afternoon. About ten minutes before she arrived Olivia threw up. It was not cool. Talk about adding stress to an already stressful morning! We talked about one of us staying with the three at home and one of us taking Brian, but Brian was so upset and crying. He kept saying that he wanted both of us to take him. We really wanted to both be there for him. Olivia was happy to watch Dora and love on her blankies, but we felt bad leaving our wonderful friend Julie with a sick baby. Since Julie loves our family and has raised three children (and homeschooled all three) we knew she could handle it. She was willing and we were so blessed by her today. She did more than clean up vomit and teach school, she encouraged us spiritually and really carried us through a rough day. Now she is part of the family because she saw our masterbedroom that has everything thrown in it in when we are attempting to appear to have a clean house. So picture that with piles of laundry exploding all over the place and every single toy we own out and about. That was our house this morning. Oh yes, and dishes in the sink. For this OCD mommy it was super humbling. One of my life lessons is going to be to let go and know that God is in control and not me. I am not even in control of my laundry and messy house. I am not capable of doing it all. I have had some wonderful woman encourage me to let the house go and be with the kids because they will be gone before you know it. If I didn't have four kids in four years I am not sure I could have done that. God has forced me to realize I can't do it all. It is a good place to be. I am dependant. Not just on God everyday, but on the body of Christ to help carry us through this time. Thank you Julie for revealing your love for Jesus as you serve our family. You are such a gift! (And totally obligated to come back and see our house when it is clean!!!)
  For this PCA pastors daughter who went to the PCA college and worked during a summer at the PCA camp, it has been such a wonderful thing to see the body of Christ (not just the believers from our PCA church) pull together and help us. Our friends from our Classical Conversations group have really showered us with love. They have meals planned once a week for the next two months. One of our first friends from CC (and becoming a very close friend that we can't do without!) has come and taken Ansley so she didn't miss out on the field trip to the Post Office. Her daughters are the same ages as our girls. She made a morning out of it and even took Ansley and her girls to get ice cream treats and pick out pumpkins. She even thought to bring William some popsicles because his throat was sore. (Thank you, Melanie!) Ansley had a fabulous time and Brian slept with "his" pumpkin for six days straight.
   We have been so loved and taken care of by people that love the Lord. Thank you to everyone who has helped us. Even those in Panama City that have given us gift cards for meals or made a meal for someone in my family to transport over here. THANK YOU!! It really makes a difference. I don't ever want to leave anyone out. So many people have been so helpful. If I fail to highlight someone or get a thank you note out, please accept my apologies. My mind is all over the place right now while I try to juggle so many things. Nothing goes unnoticed. Not even the bags of popcorn that Mrs Londa dropped off last week. That was so awesome. She remembered Brian loved popcorn when he was on chemo last year. She was right on. Brian's must haves when on chemo are popcorn and pizza. A big Thank you VanYperen family for the Dominos gift card. Brian is especially grateful. The Schreiber funds seem to floating in the direction of Sacred Heart (and Nemours, labs and every doctor we glance at!) and very little is left over for the Dominos fund.   :)
We really appreciate all your help and prayers. Thank you so much! While I am giving out the general apologies for not getting thank you's out, I am sorry to anyone who has called or e-mailed and I haven't gotten back to you yet. We appreciate every e-mail  and love getting them. Please don't stop sending the e-mails but don't expect an immediate response. We are trying to get through the day. Not to mention it is incredibly draining to retell what is going on about five times a day. Thank you all for understanding.

Special shout out to Felicity who wants to quit school and come live with us to help out...I love you lots!