Sunday, October 17, 2010

Super Cute

Freddie and Brian outside tonight. They spent some time in the quiet outdoors looking at the moon and stars. Brian fell asleep on Daddy's lap.

My how times have changed. Some time ago this might have been Mommy and Daddy sitting outside talking while Daddy drank a cold beer. Nowadays, Daddy's cup holder is sportin' a Cars Thermos with Gatorade.

some recent pictures

Even before Brian got the throw ups today he has started to show some signs of the chemo slowing him down. Nowadays it is not uncommon for him to just go plop himself down somewhere and fall asleep. Sometimes he will even say he just wants to go get in his bed. Here is a picture of Brian asleep on our church pew. (It's at our house not a church. It's from Carrie's church that her Daddy was the pastor of . Carrie grew up at the church and married Fred in that church. Carrie's uncle Rod cut the pew down to size. It's special. Brian has claimed it as a special spot too.)    

One of Brian's things he has become pretty obsessed with since chemo round one is being in small spaces. I don't know if it a control issue or what. It is kinda like he prefers to be in a small kingdom where he feels safe and in charge. He HATES when the other kids mess up his "cage" or "dog house". Those are just some of the names he calls his tight spaces. Here is a series of pictures of Brian from the other day. He made himself a cage and happily sat and watched Wall E while eating a bagel. Brian is mildly obsessed with Wall E right now too. He watches the movie at least once a day. He has told us that we are going to name our next baby Eve or Eva after the Wall E movie. We went a head and told him that we would definitely name our next baby Eva Wall E.  

Not too far into his movie Brian hopped on the couch and fell asleep. It doesn't take much to tire him out.

William and Brian are best buddies. They are almost 14 months apart. They miss each other when they are apart and are excited to be reunited. They share a room and typically chat/play/bond for about 35 minutes to an hour every night before bed. We had to start putting them in bed a little early because we didn't want them to miss out on this time. It is truly sweet brotherly love. When Brian got sick last year we moved the baby monitor into the boy's room. It was soooo much fun to sit and listen to their conversations and encouragement to each other. That made us want to give the boys their bonding time. Of course they are not perfect and there are some nights we have to go in and say "No talking. Go to bed!" We can typically tell when the night is going to go down hill. I digress. Recently Brian has started falling asleep as soon as he gets in bed. Plus he has been a bit moody lately. William takes this personally and gets frustrated at Brian for being so mean to him. While we do correct Brian when he is out of line and don't allow him to be mean, William has been convinced that Brian doesn't like him. Plus he thinks Brian is getting some special time with Mommy and Daddy then a trip to Toys R Us for a new toy each week. To resolve any uncertainty William may have had we took him with us to Brian's appointment on Friday. It all became clear that Brian was not having fun with Mommy and Daddy and didn't get a new toy each week. In fact William has been so compassionate and understanding of what Brian has to go through. When we got home from the appointment William gave Brian his medal for being such a brave boy. Mission accomplished. I think Miss Ansley will go next week! In all seriousness it was good for Brian too. He really liked having William there supporting him and offering encouragement.

Trying to Update You...

Poor Brian. This has become the spot for BB.
Well, we had some great news this week but I haven't been able to update you. We've had the throw up virus at our house and our computer died. The computer thing wasn't unexpected. It has been dying a slow and painful death for months now. We were just trying to stretch it out until the beginning of next year. Didn't happen. New computer up and running.
   Last night started Brian's turn with the throw ups. In the middle of the night he started complaining about throwing up and dry heaved enough to make his nose bleed out of both nostrils. It was really sad!! I freaked out just a wee bit. :) Back to the update. Brian's water deprivation test and brain MRI came back revealing that he didn't have DI and he did not appear to have Histio involvement in the brain. This is all good news. It means that they are leaving Brian's diagnosis as single system involvement and low risk. We kinda have two doctors right now as our original doctor has clinic days on Tuesday and Wednesday and we really needed Friday to be our chemo day. We've switched to Friday's and it works out because we love the doctor that we see on Friday too. Although this Friday we will see our first doctor as our Friday doctor will be on vacation. OK, wow, too much information. :) Between our two doctors the latest information we've received is that Brian will now be on chemo for one year. After consulting with three of the leading experts in Histiocytosis and reading a bunch of articles, studies, etc. our doctor has changed our course of action to an initial six weeks of Vinblastine and Dexamethasone, then the remaining ten and half months will be two other chemo drugs that are most frequently used to treat leukemia. Brian took Vinblastine for seven months during his first round of chemo, but he took it with a less powerful steroid. The other two chemo drugs we have not played around with. We shall see how he responds. We are praying that this time we "get it" and Brian will not have another recurrence. Must run. Poor little guy is really tuckered out from the throw ups. I will call his oncologist in the morning and I am praying that he will not have to go in or be admitted to the hospital.

Tuesday, October 12, 2010

things that stink & some encouragement

To get through chemo without Fred having to hold Brian down we have been doing a lot of positive talk to Brian. We repeatedly say things like, "you're the bravest boy we know" or "not a lot of four year olds could do what you're the best four year old in the world!" etc. So, after his marathon appointment on Friday Brian said no less then 205 times, "I'm was the bravest boy when I got my butterfly out." (that would be the needle used to access his port.) Every single time we reaffirm just how wonderful Brian is and what a trooper he has been. We even initiate the compliments and out of no where we will tell him just how brave he is and how wonderful he has been.
   So on Friday we kept pumping Brian up on how brave he will be about getting his port accessed for his MRI. We were thrilled when we discovered they would not be accessing his port, but would be putting in an IV after he was asleep with the gas. Brian, supposedly, would never know. No needles, that was what the anesthesiologist told him. When it was time for B to go into the MRI room they let me carry him to the door then took him crying and upset. They put our scared little boy on the table and shut the door in our faces. Brian was really upset. We didn't like it either. We were comforted that Brian would not be remembering it. Supposedly the medicines he was to be given had an amnesia effect. Well, imagine my horror when later that night Brian said, "I was so brave when they put my mask on me. Remember, Mommy, when I was in the room by myself. They made me breath my mask. I was so brave. The doctors are so mean to not let you come in."

He also woke up from his sedation requesting his IV to be removed- no needles, remember! He doesn't understand that the doctor was saying no needles initially.

These are just things that stink.

Things that encourage...

I took a picture of Brian with all the cards, pictures and banner that the students at Covenant Christian School made for Brian. I sent the picture to my dad and he posted as part of the slide show at the beginning of chapel and the evening church service. Thank you to EVERYONE who continues to lift us up in prayer and support us through communicating with Brian. He loves receiving all the mail!

BB's hair

People keep asking how Brian responds to the chemo. While it is different for everyone and they can't predict who will lose their hair and who will not, here is what Brian experienced last go around. He is taking a more aggressive approach this time.

Brian's double crown is too cute. Mommy took this picture in September 2009. Brian's before picture.

This picture was taken in February 2010. This is Brian's during picture. There were no hair cuts or trims. This is his hair left alone while on chemo. It is thin and fried with some bald spots.  

When Brian's hair was wet you could really see his bald spots.

Brian's hair October 2010. Before chemo. I love this hot mess! He really needs a hair cut but knowing it is probably about to fall out makes me not want to cut it. I LOVE Brian's double crown.

The above two pictures of Brian's hair right now are what our boys call "popped up" hair. Both William and Brian have a double crown. When they get some length to their hair it gets a little crazy. If it is cut too short it stands straight up all the time. I love their swirls on the top of their heads!!

Monday, October 11, 2010

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 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!

Thursday, October 7, 2010

Chemo 10-6-10

Brian had his first dose of chemo yesterday. It went well. He did not have to be held down and physically restrained by Fred. That is a HUGE answer to prayer as Brian has blamed Fred for all this happening to him and channeling all of his anger and emotion toward Fred. That would show itself in Brian saying he was mad at Daddy or he would quite frequently not even acknowledge that Fred was talking to him or even in the room. If Fred said "I love you Brian" Brian would then look away from Fred and not acknowledge he heard Fred. Then Brian would look at me and say, "I love you, Mommy." Even two weeks ago when Brian got his port implanted he was angry at Fred. Brian knows that port means chemo and chemo means "Daddy pins me down while nurses stick me and take my blood." While he is young, Brian is very aware of what is going on and remembers a lot more than we had hoped he would. When we ask Brian what we can do for him as he is upset or getting nervous about a doctors appointment, Brian's response is almost always "pray that I don't have to have a port and chemo when I am five."

   Brian has been showing a few more symptoms lately. He is having a water deprivation test with a Pediatric Endocrinologist (Dr. Kummer) tomorrow morning to rule out Diabetes Insipidus. We are pretty confident he has it, which is evidence that the Histiocytosis is attacking his brain, specifically the pituitary gland. Brian will have a MRI early next week to see if there is a presence of Histio in his brain. If he has this diabetes insipidus (and the brain involvement of Histio) than we will change the level of chemo we are currently scheduled to do, to something much more aggressive. Please be in prayer for Brian and our family this coming week.

Romans 11:33-36
   Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable his judgements and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been his counselor? Who has ever given to God, that God should repay him? For from him and through him and to him are all things. To him be the glory forever! Amen.