Friday, February 22, 2013

Update 2-22-13

WOW, I have really neglected our blog. I am so sorry. Some of you receive e-mail updates from my dad so you are in the loop, but I will go ahead and give a quick recap of the last month.

Several weeks ago I found out I had shingles. I am thankful that it was a very mild case. I was told it can be brought on by stress. We live at "stressed". :) Fred and I often talk about what life would look like if Brian didn't have LCH. We cannot imagine. We cannot even comprehend what life would be like without chemo, Diabetes Insipidus, blood work, MRI's, doctors appointments, several pills a day and several prescriptions a month...

I am thankful that it was a very mild case of shingles.

Brian's last treatment week was delayed one week because of his ANC being low. It stinks that his counts were low, but it was kinda an answer to Brian's prayer. God shows us HIS love for us all the time. Brian's treatment week was scheduled the week of Olivia's birthday. He was very upset about "missing" her birthday. When he has his port accessed he doesn't like to go anywhere or do anything. We stay at home and leave only to go to the hospital for treatment. Olivia's birthday was a Tuesday and while we planned her party with her friends for the following Saturday, Brian was very upset about being accessed on her actual birthday. With the low ANC, chemo was delayed and Brian was able to enjoy the birthday festivities port needle free. Brian was glad and this mama smiled at just another way God shows us that HE cares for us.

Brian's chemo week was February 4-8th. Monday and Tuesday were not good days. Brian got very upset when we had to access his port on Monday. It was horrible and both Fred and I were spent when it was all over. Tuesday Brian got sick. Not sure what it is about magical day two, but Brian always gets sick on Tuesday. Uncle James and Aunt Kasy were in town all week so Aunt Kasy went to chemo with us on Thursday. Brian really enjoys having his entourage of siblings. He prefers it and doesn't want to go to an appointment without them. Having Aunt Kasy come along was fun for all the kids. They enjoyed telling her everything she needs to know about chemo appointments.

The Friday before treatment week we went back to the lab to get Brian's ANC checked.
Brian upset at the lab. He didn't want to get his blood work done.
 After school on Monday we went to lunch at Chick Fil A with Uncle James and Aunt Kasy before we headed to chemo and they headed to the Navy Base for the week.
The girls with Aunt Kasy.

The boys with Uncle James.
 The pictures are out of order as Tuesday was PJ day because Brian didn't feel well. But, here are some pictures from treatment.

On Thursday we also finished signing all the releases and filling out all the paperwork for Brian's referral to Texas Children's in Houston to see Dr. Kenneth McClain. We don't have an appointment date yet, but when we do we will let you know.

 Brian has to have another MRI in the next couple of weeks and his next chemo week is scheduled for March 4-8th. Please be in prayer for him as he doesn't like MRI's. A couple of days ago I overheard William and Brian talking to each other. They were playing "MRI." Brian was telling William all about it and explaining that "when I wake up my legs don't work for a while."

It makes this mama's heart sad to Brian's voice get shaky and scared when he tells William about a MRI.  I am thankful that I was able to overhear the private moment between brothers. It lets us know what's going on inside of Brian and we can better help him process and deal with what is in front of him and what he has already endured the last three and a half years.

It has been three and a half years of battling LCH. It's been long and it's been taxing. We would change it in a heartbeat if we could, but we have seen how God has used it, and is still using it, for HIS glory and our good. We know that we are lifted up in prayer all over the world. It is such an encouragement to know that we are not alone and that other people care. The body of Christ has supported us physically as well. When our van needed more repairs, when our washing machine needed a part replaced, when I had shingles and was just exhausted, we received gifts from the Lucas family, the Wit family, and the G & J Hayes family and the Chocolate Circle Bible Study Group (headed up by K. DeVries). God provided through the generosity of others and we are so blessed. THANK YOU SO MUCH!!! 

Several of you have asked us what we need and how can you help us. We never know quite how to answer that. We have never had to ask for anything, God always provides right when we need it. For example, The Wit family gave us some restaurant gift cards for Christmas. They were to be delivered by my sister. We just saw my sister for the first time since Thanksgiving at Olivia's birthday celebration. Had we received the gift cards at Christmas time we might have used them for a treat for family fun night or something like that. Instead, we received them when I had shingles. While the case of shingles was so very mild, the medicine I was taking made me so dizzy that I felt sick every time I took it. I was suppose to take it three times a day. The timing of receiving the gift cards was perfect. We were able to use the gift cards when we needed them. God is pretty amazing like that. Fred and I see it over and over again.

I do have an opportunity for a fundraiser that will directly help us out if anyone is interested. PLEASE DO NOT FEEL OBLIGATED. I tossed the idea of putting this on the blog around for quite some time. I don't want to come across as "give to us". The reason I put the last paragraph up was to show that we KNOW everything comes from God. HE provides. With that being said, a couple of my friends scolded me for not posting about the fundraiser. So, here it goes...

We are a part of a home school group, Classical Conversations. We LOVE it and cannot say enough wonderful things about our group. We meet on Monday's at a local church and the kids are each in a class. They get to do science projects, art projects, learn about the orchestra, classical music, timeline, history, math, Latin, science, English grammar, geography, etc. It is a non negotiable in our house. It gives me some accountability in our home school and keeps us on track. The kids LOVE it and we gain so much from being a part of this community. Just this year the kids have dissected owl pellets, drawn like El Greco and learned to play the tin whistle. All things I would not have done with just the five of us at home. There is a cost to be a part of the group. It covers registration, supply fees and tuition. Our community is currently doing a fundraiser to help each family raise money to cover their fees. So, the money we raise goes directly to my kids and my fees, not to the entire group. If you are interested you can purchase something from Mixed Bag Designs and 50% of your purchase goes directly to my kids. (If you are not local and you order online it's shipped to you and 40% of your purchase goes to my kids.) I am including a picture of the handout we received so you can follow those instructions if interested. If you have any further questions you can e-mail me. I cropped April Morgan's e-mail address off the flyer because I didn't want her to get a bunch of junk mail because I posted her address on the Internet.(She's the CC Director here in Pensacola)
  If you want to email me and don't know my e-mail address please post a comment on the blog and I will get with you.

Sorry, it was raining the day we got these and there is a smudge from a  rain drop. The web address is   The referring participant's name to enter is SCHREIBER

Thank you for your love to our family and constant prayers for Brian Robert.

Brian doing a presentation at school two weeks ago.

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