Back to Texas

We're heading back to Texas.

This week is a chemo week but we are headed back to Texas on April 15th. Brian will have an MRI at Texas Children's on April 16th. Please be in prayer for our family as we are really hoping that Brian will not need more chemo. We found out on Monday that this week is the last week of treatment for the current protocol. So, drum roll please... if Brian doesn't require more treatment (to be determined from the MRI done in Texas) than he will be FINISHED with chemo by the end of this week. We are really hopeful and are praying constantly that our sweet boy can finally be done with chemotherapy after a very long three and half years of treatment.

Here's this month's chemo calendar.

The birthday cake on April 15th is for my b-day. (Carrie) My gift this year is that I get to go the DMV and renew my drivers license that will expires on the 15th. I certainly hope they don't make me take that written exam about traffic laws and how many car lengths you should be from the car in front of you. It's been almost 20 years since I have read about all that. :-)

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.

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.

MRI

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.

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 www.mixedbagdesigns.com   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.


 

                        

                          chemo calendars

Please Pray

Please pray for Brian as his counts are low. His ANC is 520, so his chemo that was scheduled for this week has been pushed back to next week. Please pray that Brian doesn't catch any of the yucky illnesses that have been going around. Also pray that his counts improve so he can receive treatment next week.
  Still no word on our Texas trip...we will let you know. Thanks for praying.

Hello

We are still here. :-)

We had a wonderful four week break from chemo. Brian was scheduled to have the week of Christmas as his next chemo week. We said "no thank you", and his doctor agreed. We pushed chemo to the week of New Years.

This year we decided to stay home and rest the week of Christmas instead of traveling to see family. It was so providential because we ended up with the flu. I (Carrie) got it first on Christmas Eve. I assumed I had the illness my sister had earlier in the week, so I kept thinking I would be OK in a day or two. By Thursday I was saying my goodbyes to everyone because I was sure I was dying. So, when William and Fred started to feel poorly on Thursday evening, we took William in to the doctor Friday. We discovered it was the flu and the entire family got on Tamiflu, except me. Apparently you have to start Tamiflu within so many hours of your first symptoms. Out of the six of us everyone but Brian ended up getting sick. (remember he got the flu shot.)  PRAISE THE LORD THAT BRIAN DIDN'T GET IT!!!! Fred, Ansley, William and Olivia didn't get too sick because of the Tamiflu, but Miss Ansley had the horrible Tamiflu side effect of throwing up. Praise the Lord we are over it and we are healthy. Fred was a great husband and took care of EVERYTHING while I was in the bed or on the couch. (He even made Christmas dinner all by himself.) I was kinda useless for a full week.
    Brian's chemo week was at the tail end of our flu week so we had a sweet friend (Thank you Cheryl B.) come watch the three kiddos while Fred and I took Brian in for his Monday doctors appointment. (Dec. 31). We needed to both be there to present some concerns and discuss options with the doctor. We prayed about this visit and God totally answered our prayers. Dr. Brown handled the entire situation wonderfully and we are being referred to Dr. Kenneth McClain of Texas Children's in Houston. We are super excited and cannot wait to see him as he is the expert on LCH. We do not have a date set yet, but when we do, we will let you know.

     Chemo went ok. Brian had chemo Monday, Wednesday, Thursday and Friday b/c of the New Years holiday on Tuesday. So his doses were increased to get the normal five days of drugs administered in four days. He did alright. He felt a little sick and yucky on Monday, but did fine the rest of the week.
   This week are we getting back in the swing of things. Music and dance lessons start back today and our Classical Conversations group starts back Monday. Thank you for your prayers. I still have not fixed my photo problem. This past month has been on fast forward with a full week taken out b/c of the flu. Hopefully as we get back into our normal routine I will be able to get that up and running this week. I have some super cute pictures to share.

Pictures

Well, apparently I am going to have to buy more storage for pictures to be uploaded to the blog. I will work on that later today and then post lots.  :-)
 
 Thanks for continuing to check on Brian Robert.

Update 11/27/12

Thanks to all of you that keep checking on the blog for updates on Brian. We appreciate your thoughtfulness, prayers, concern and love for us.
   We have enjoyed the last three weeks of a break and even traveled over to Panama City for Thanksgiving. It was a wonderful time and the first time we had all  been together in a year. We even managed a family photo of all twenty of us.


Yesterday we went in an hour before Brian's appointment to do his blood work. While his counts were up to 750, and he is able to receive chemo, they are a little concerned that his counts have remained very low the last three months. Some blood was taken before he received chemo yesterday and we are guessing we will hear soon if he will need another IVIG. He has had three of them in the last three years of chemo. Actually, he managed to do just fine the first go around of chemo, it's the second round that he started having things happened that required more treatment or IVIG's. So, he has had three IVIG's in the last two years.
   Yesterday was really hard. I think Brian really enjoyed playing with his cousins and shooting guns with his daddy, uncles and cousin. He longs for the day when he has "no more chemo". (As he says in his prayers all the time)  In addition to transitioning back into chemo week, they sprung a surprise on us and gave Brian a flu shot. While that may not sound like a big deal to most of you, it was MAJOR for Brian. He is constantly asking for reassurance and making sure he knows what to expect. It is very difficult when he gets hit with something outside of what he was expecting. We can tell it has had its consequences because Brian will somberly come near us and lay his head down on one of our shoulders and ask, "What is tomorrow? What is the next day? What is the day after that? And then, what's the day after that?"


    Today is the sick day. Day two. Always. Right now, Brian is in bed with Fred watching a movie. He hasn't eaten and doesn't want to. Because he doesn't eat or drink anything we don't give him his DDAVP pills for his Diabetes Insipidus until he starts to urinate and drink again. The whole day is just off and Brian feels so ill. We hate it for him.
   Just to sprinkle some more stress in our life, our van is messed up again. Fortunately it's the same problem so it shouldn't cost us anything to repair. However, we don't want to have to keep repairing a van every couple of months. When we do have to take it in for repairs we are out of transportation. Given our situation with Brian we don't really like the idea of not having some wheels in an emergency situation. So, something to pray about.
      I would type more and I have some great pictures but for some reason Blogger is giving me fits. I might scream if I sit here longer and fool with more. :-) I will try again tomorrow. Thanks so much for praying for our sweet Brian Robert and all our kiddos.
   
  

Update Nov. 2 2012

Thank you to everyone that prayed for us this week. It was a rough one!!! Not only was it a chemo week, but Brian had his MRI on Wednesday. They always do that with sedation, so it's kind of a big deal. We also had some home problems that included plumbing issues backed up into our shower, bathtub, and bathroom floors and some termites. It got ugly. We ended up calling roto rooter and using a lot of bleach. :-) That, of course, happened on Tuesday, Brian's day two of treatment. Ya know, the dreaded day that Brian always gets sick. Ahh...glad the week is over. (well, the termite drama started two weeks before.)

 

Here's Brian's next couple of months of chemo calendars. I didn't circle the week in December b/c he is technically suppose to receive chemo the week of Christmas. Brian will not, but we aren't sure if it will be the week before or the week after.

 

 

 

Here are some pictures from the week. Friday (10/26) we did bloodwork. The Saturday before chemo we carved our pumpkins as a family. It's always a big deal in our house because Fred is kinda the world's best pumpkin carver. The kids always get excited to choose what Daddy will carve into their pumpkin. I believe Brian was attempting to pick the most complicated thing he could. He finally settled on Darth Vadar and he was happy with it.

Here is a picture of the pumpkins in the dark. Super cool!

 
Monday we went to school, then headed to Nemours for Brian's doctor appointment and chemo. I know I had mentioned that Brian wasn't going to participate in CC this year, but about week 6 or 7 he decided that he did want to be in a class. Fortunately there was room for Brian to join Olivia's class.

Sweet Brian doing his presentation on the Lego Company. Oh, how he LOVES Legos!

    Monday we found out that Brian's counts from Friday were at 620. The doctor wanted to redo labs to see where Brian's counts were. They were at 650 so we went ahead with chemo. The kids were tired after our morning at school so we all just watched a TV show while Brian got his chemo. Olivia always has a smile! We ended up being there for over three hours because of the extra lab work and the pharmacy was behind or not informed we were there. Not sure what was going on.

 

Tuesday was HORRIBLE. In the midst of all the mess, a sweet family from our CC group came over and delivered a surprise for the kids. We didn't believe we were going to get to do anything for Halloween. So, the Duncan family brought over enough candy for the entire neighborhood!! It was so thoughtful and generous and sweet. Very creative too. I totally teared up b/c I was on the edge emotionally. They delivered the surprise as the Roto Rooter man was doing his thing. When he knocked on the door to tell me what was up and to collect payment, I totally said goodbye to the Duncan's without realizing I was basically throwing them out of the house. When it dawned on me (after they left) I was so upset and embarrassed. Tuesday was not a good day.

 

 

 

Wednesday was an early morning as Brian was scheduled for his MRI at 7:00 AM. Fred dropped the other three off at a friends house while Brian and I headed to the hospital. I had to call Fred for back up because the lady checking me in at MRI was giving me some problems. They had the wrong doctor listed as the ordering physician and I wanted them to correct it. I am talking totally wrong. Not a different doctor in the practice, but a combination of Brian's name and Brian's doctors name. I told her that there must have been a mistake and would she please correct it. She wouldn't. So, I scratched out the name and wrote the correct one in. The lady was frustrated with me. She took my papers away and printed off another copy with the incorrect name still on it. I told her that I wouldn't sign it until she corrected it. She was firm that it was right and I was mistaken. She was sure that I just didn't know all the pediatric hem/onc doctors. I firmly reassured her that we have been playing this game for three years and, yes, we do know all the doctors. Brian Schwartz may be a real doctor, but he is not our real doctor and he is not in pediatric hem/onc at Nemours. Fred was frustrated and told me to tell them that it is wrong and we don't care if the name Brian Schwartz is a real doctor or a mistake of Brian's name and his doctors name being combined. But, what we do care about is please correct the error so that our doctor gets the results of the imaging. We dont' want to have to track it down b/c the wrong doctor got sent the results or delay the process of finding out the results ourselves.

 

Unnecessary drama.  

 

The anesthesiologist that was taking care of Brian, Dr. Cutrone, is a tall Italian man. He's hard to forget. This is the third MRI he has done with Brian. He remembered us and was very friendly to Brian. Before taking Brian back he sat down next to Brian and drew something on his hand. Then he asked Brian to guess. It was super sweet. I took a great picture of Dr. Cutrone holding Brian's hand and drawing on it, but for some reason my phone didn't save it. I was pretty bummed. Here's Brian's hand.

 

 

 

They gave Brian some versed, then immediately took him back. They didn't really give the Versed a chance to take effect, so Brian remembers and was sad that we were separated. However, you can tell in the picture that he was a little drugged.

 

 and pushing him on back...

 

After he woke up we stayed in recovery for thirty minutes. Then we headed over to Nemours for chemo. Brian was still a little out of it. Since it was Halloween they handed out treats. Apparently some of the local elementary schools put together some gift baskets. It was really sweet.

 

Brian was too out of it to care about his gift basket of candy.

I thought this one was pretty creative.  

 
Thursday we were the first chemo appointment of the day so we had to wait a couple of hours again. Same problem on Friday. It has been taking several hours to get the chemo upstairs so we end up waiting for two and three hours. We were told on Friday that they are coming up with a new system so that chemo is ready for each patient as they arrive, rather than waiting on three or four patients and making the chemo in bulk. I don't understand any of this as all the kids are on different meds and doses based on their weight, illness, etc. So, I have no clue what is really going on. I just know that Friday was not a good day. We had all four kids with us and we were all zapped. It had been a long, bad week. Brian was really upset. He fought a whole bunch and accidentally kicked his nurse as she was trying to take the port needle out. We are very thankful the week is over and look forward to having three weeks of a break.
  Thank you for your prayers. We know that God using you all to lift us up and encourage us. God reminds us of His presence through each of you loving on us and caring for us. We are tired and so sick of doing this. Three years has really worn on us. Especially Brian. It just tears our parents hearts to see his spirit down and broken when he knows chemo is coming.

Photos

I found these pictures that I meant to post from two weeks ago. I never got to it, so here they are now.

 

Wednesday we didn't get a room. We were out in the open area with a curtain drawn around Brian's chair. The kids were a bit wild and cranky. And, yes, I let Brian wear his PJ pants and white undershirt out in public!! I am going to blame that fashion choice on the fact that we were headed to chemo and I didn't care what he looked like or what anyone thought. That was the day that Fred had to drive to Orlando and back for a one hour and ten minute meeting. I think his day was worse than ours because he hated to miss Brian's chemo appointment.

 

 

 

We were ALL super tired and grumpy on Thursday. Here we are piled up on the bed watching Disney Jr. (Fred was sitting in the chair beside the bed.)  

 

Another Week Complete

 

 Another week of chemo is behind us. It was a rough one. Brian fought a lot on Monday when they had to access his port and today when the needle was taken out. Brian got sick on Tuesday, day two of chemo, and Fred had to drive to Orlando (and back) on Wednesday for a required one hour training. We've had a long week.

 

 We also learned on Monday that Brian's counts were at 720. They are suppose to be at 750 to receive chemo but the doctor said it was close enough, so we went ahead with treatment. However, we can expect Brian to be neutropenic in the coming days as the chemo starts to take it's toll. (Remember below 500 is neutropenic.) Because of this we will not be doing much outside of the home the next few weeks.

These things have become a part of our norm. I'm afraid that we have gotten "too good" at juggling all we have going on. Perhaps we don't let everyone see the pain and difficulty as often as we should. Or perhaps we don't even know how to answer questions like, "what do you need?"  

 

I had a whole long post typed up but just deleted it. All I will say is that God has been working mightily in our marriage and in our parenting as a result of all we have going on. For that we are thankful and we do see the good (Rom 8: 28). Just because we see the good, and we are blessed by God's work in our life, that doesn't mean that we don't struggle and have difficult days. This week has been difficult. 

 

Please keep praying for our family and for precious Brian Robert. He has a MRI on Wednesday of next week. Those are always done with sedation.

 

Here are some pictures of Brian from Tuesday when he got sick. We are thankful that it is just day two that completely knocks him out.  

 

At it again

We're at it again this week. Brian started chemo yesterday. His appointment wasn't until 1:30 PM, so we did some school work in the morning. (Typically we don't do too much during a chemo week.) While I was working with Ansley and William, Brian and Liv were drawing and coloring. I took a picture of Brian's art work because it made me super sad. He spent the entire morning consumed with thoughts of chemotherapy. The picture on the left is Brian sitting on the hospital bed playing with the iPad. The picture on the right is the pump on a pole. The huge thing coming out of the pole on the right side is the tubing that attaches to Brian. He drew it huge because, in his mind, lots of medicine goes into him.

 

 

But you can see, even though he was describing chemo and saying, "I'm scared", he has a huge smile on his face. He's such a sweet boy!

Yesterday was draining. Brian fought a bunch more than typical and he cried and screamed. We ended up having to physically restrain him. Brian has a look of terror and disappointment right after his port is accessed that just crushes us.

Please pray for Brian this week as he receives his chemo treatments. We pray every day that these treatments and this protocol would work. 

Indiana Jones

 

Brian LOVES Legos and gets fixed on one set. He plays with that theme over and over all day long. He uses all the Legos that he and William share to build whatever the story may be for his favorite theme. Brian has loved Indiana Jones since February. In fact when he was interviewed for his Make A Wish trip he said he wanted to meet Indiana Jones. They granted his wish and Brian had a great experience. (I still need to post all the pics). I was reminded to post the following picture of Brian and Indiana Jones when I found this drawing on my computer desk last week. Our kids draw pictures everyday and everyone is their new favorite. But this one, yes, this one IS a new favorite.  Brian drew Indiana Jones.

 

 

Brian and Indiana Jones.

When Indiana Jones found out Brian was on his Make A Wish Trip he gave Brian a hat. It's special, you can't go buy it in the gift shop. It is the hat the actor wears in the stunt show. Brian felt like a king. It was great. So of course for Brian's birthday he wanted Indiana Jones Legos. We searched and realized they no longer sell them in the stores. We had to search on E-bay and my, oh my, are they pricey. I must say though, he is one sweet and grateful boy.

Chemo Calendar

This is Brian's second September calendar. The hurricane kinda messed up his schedule. Remember I said he would be having chemo next week? Well, scratch that. He will have it the week of October the first. If you remember we even asked why they were scheduling Brian with a two week break instead of the usual three. Anywho...we got a call that somehow the scheduling was overlooked and he was pushed back to the week of October 1st. So, here are Brian's chemo calendars for Sept. and October.

 

All is Well

 Thanks for praying for Brian last week. He did get sick on day two (as always), however, we didn't have to go to the ER. That's a huge blessing.
   We had our AC on our van repaired. We are so thankful that Fred knows a good mechanic that we trust.  We aren't out an outrageous amount of money. I am pretty sure he gave us a break on labor costs because he ended up having to repair a part he replaced last summer. The warranty expired at 12 months, but the mechanic still felt bad that it went out so quickly. Very awesome. God provides.
    Brian's counts will drop over this coming week and a half. Instead of having three weeks to recover he will only have two. I guess they are trying to get him back on track after missing a week b/c of the hurricane. Plus, if they didn't try to "make that time up" he would be due to receive chemo the week of Christmas. That's not cool, so we are thankful that they are looking at things like that. We are concerned about his little body so please pray that he is able to handle chemo sooner than his body is used to.
  All is well in the Schreiber house. Thank you for loving us and praying for us.



Here are some cute pictures of Mr. Brian and his bestie and older brother, William.

These two always have tons of fun together, but when it comes to school I typically have to separate them. They are only a year apart, so there are some things that they do together. William gets SO mad if I am asking him a question and Brian yells out the answer. God has just gifted Brian with some smarts. He has never really "done" school, but he has just absorbed everything he hears Ansley and William learning. This year Brian is in Kindergarten. Yesterday I attempted to be fun Mom and we did our spelling and phonics outside. I made boys sit back to back so they couldn't see what the other was writing.
   For those of you that are curious what we are doing, we are using our All About Spelling curriculum. I LOVE it. In this picture you see me reviewing with the boys. I say a sound and they write down what they heard. Then we mix it up and I say a letter and they tell me the sounds that letter makes. For exampe, C says /k/ and /s/. They then say the rule that C says /s/ before e, i or y.

These boys are just too cute!!!

Chemo 9-5-12

Brian started his chemo week yesterday. In true Schreiber fashion the week is not without some drama.

 

 We started the day early as we had to get Brian's blood work done before we headed to Classical Conversations at 9:00. Because of the holiday, our Monday school met on Tuesday this week. We typically do blood work the Friday before a chemo week, however, this past Friday, in an effort to complete school assignments before we headed to the lab, we ended up not getting blood work done. I didn't realize the lab closed early on Fridays. Oops. That's what I get for making school a priority.  :-)

 

So, Tuesday we headed to the clinic at 8:00 AM to get some blood work done, then went to our CC day. After school we headed back to the hospital for Brian's doctor appointment and chemo at 1:30. Several days ago William was sick and his cough has lingered (mostly at night), so we made an appointment with his pediatrician for 3:30. We wanted to make sure there wasn't anything we should be doing for William and didn't want to put it off another day. As it was, we had already put it off thinking he would get rid of that cough soon enough. William hadn't been sick the last few days, but Sunday night and Monday night were not good nights of sleep for William as he was constantly hacking and coughing.

 

Tuesday afternoon at 1:30 we saw the oncologist, got Brian checked in on the infusion side, had his port accessed, then waited. When the chemo drugs still had not arrived by 3:00, William, Olivia and I left Fred, Ansley and Brian at the hospital and headed to the pediatrician's office.

 

Olivia was a goof and having a great time in the waiting room. William was having a good time taking pictures. I felt silly sitting in the sick waiting area because clearly my kids were not sick. :-)

 

 

 

When we got back to our room we waited a while. The doctor was busy and since they were working us in I didn't mind the wait. Olivia, William and I had read about seven books when Olivia wanted to sit on my lap. She sat quietly at first. I assumed she was tired from the long day. Then she started getting whiny and fussy. She felt like dead weight and was hot.

That's when the pediatrician came in.  I told her we were there for William's lingering cough, but in the last thirty minutes of waiting Olivia had gotten sick! Sure enough, Olivia had a temp of almost 102. I am sure she has whatever William had.

 

 

 

We love our pediatrician and she took good care of both kiddos. We got home just a few minutes after the other three. Brian did well through chemo and was excited for us all to be home.

 

 

With sick kiddos, Fred worked from home while I took Brian to chemo at 8:00 this morning. The pharmacy didn't have the chemo ready so we played until it was ready a little after 9:00. We were home by 10:00 and Fred went off to work. The drama of today is that I have come to grips with the fact that my AC in my van is out. It has been faulty for the last several weeks, working off and on at random times. For some reason it decided to bite the bullet and quit putting out cold air altogether. We will take it in and get it fixed soon, but this week we need our transportation. Thankfully it isn't too hot. It was kinda nice to drive around with our windows down today.  

 

 

One of the things that Brian did this morning to pass some time while waiting on the pharmacy to get the chemo ready was draw pictures. There is a golf tournament next week and I believe it is to raise funds for Nemours. I was told they like to give pictures drawn by the patients to those individuals that donate money. Brian was asked to draw a picture about golf and to write his name and age on it.

 

This is what he came up with:

 

 

It was so adorable. I was so proud. When I told Brian that Miss Erin (the Sacred Heart employee that asked him to do it) would love the picture he looked at me and said, "Nope. This isn't for her, this is for Daddy."

 

We're going to have to get it framed for Daddy. It's a special picture. So, I asked Brian to draw a different picture we could give to Miss Erin for the fund raiser and he drew the picture below.

Sweet boy!!!

Please keep praying for him. This is the dreaded day two that always makes him sick. We are praying that if he is going to get sick it will be in the next few hours so we can go back to the clinic rather than the ER.  :-)

Hurricane Isaac

Thank you to all our friends that have been concerned and texted to check on us. This is a chemo week for Brian, but because of the storm headed this way they delayed his treatments until next week. Since next Monday is a holiday he will have chemo Tuesday- Friday with the higher dosing.

Right now we are just hanging out at home and doing some school work before the bad weather comes.

We didn't do too much extra to prepare for the storm. We live pretty prepared. We have a generator and a window AC unit, so we went and got some gas for those. We always have a stock pile of food because of the way I shop with coupons and sales. I did go buy a huge dog bone so the dog will have something to do when the bad weather forces her to be in the house all day long. :-) We also put the cats in the garage with a litter box so that they don't have to be outside in the wind and rain. We went ahead and brought them in last night because I was fearful they wouldn't come out of hiding if the weather was starting to get bad. One of our outdoor cats is always in our yard. The second one only comes around at meal times. That's the one Miss Ansley is really attached to. So, with the animals secure we are set.

First Day of School

We homeschool our children, but we are also a part of a homeschool community that meets once a week at a local church. This is our fourth school year with Classical Conversations. We have LOVED our community in Pace. So much so, that our CC community has become some of our closest friends here in P'cola. The group has grown so much that a second location was opened here in Pensacola this fall. We prayed, cried and discussed what to do b/c we didn't want to leave our Pace group, but it just made so much sense for our family to move to the Pensacola location. So, today we started our first day with a new group of people in a new location. We do know a handful of families that made the move too.

We got everything ready for school the night before so that we were not late. I was so proud of myself on the way to school for all we had accomplished by 8:30 AM. (Spoiler alert...look out ahead for the train wreck!)

The night before...we are ready!!

I woke up at 6:30 AM and started making eggs for breakfast. (both scrambled and hard boiled b/c I have one that doesn't eat scrambled and two that if they see hard boiled want that kind too, and one that only eats scrambled.) As I am getting breakfast underway, Brian comes out of his room upset that he had wet the bed. He had only had two DDAVP pills the night before and, apparently, he really needs three or he will wet the bed. Brian was totally upset about it. I put breakfast on pause and quick started a bath. Once B was in the bath I ran to his room and started stripping his bed to wash the linens. It smelled like a urinal. It was beyond gross. I am pretty sure he slept in pee for a few hours b/c it wasn't completely wet. (Remember he can't help it...he has Diabetes Insipidus.)

By that point I have laundry going, I have breakfast going, I am getting lunches finished up and I happily decide I will go ahead and scrub everyone in the bath myself. Three of the four had bathed themselves the night before, but I hadn't scrubbed them since Friday, and they still need mama to wash their hair every now and again. I figured for the first day of school we would be squeaky clean.

Everything is rockin' along and I feel like wonder woman. It didn't even fluster me when twenty minutes before we needed to leave, Brian came in without shorts, shoes and underwear, announcing he had an accident because he couldn't get his pants down in time. He, who was already bathed that morning, got cleaned up a second time and we put new unders, shorts and shoes on him. At this point Fred jumped in and made the boys PBJ's for their lunch boxes so I had time to squeeze in a shower. (b/c I spent a good five to seven minutes attempting to get a cute picture of the four.)

We were working together as a family and I was feeling awesome. Super mom, that's me!

Olivia wasn't up for pictures. She busted her chin open last night. She probably could have used a stitch or three, but we cleaned her up and steri stripped at home. We used one of our left over sterile packages from Brian's home health care weeks. It would have been WAY more traumatic to take her to the ER. All our kids know of hospitals is what they see with Brian. I am confident she will be fine or we would have taken her in, but needless to say it was a bad wound.

A couple more pictures at the church before we went inside.

Brian wanted to showcase his lunch box.

We arrive with three minutes to spare. I am pretty sure I called my sister, Jess, on the way to school to tell her how awesome I am.

We found some seats and my friend and neighbor, April Morgan (the director of our new CC community), came up to me and said, "I am going to go up in about a minute and welcome everybody. I will make a couple of announcements..."

As she is saying all this I look at her with a goofy "you got it, girl" smile, thinking she is just chatting with me. I am sure I gave her the thumbs up or something dorky to encourage her. She then says, "and then I will call you guys up to the stage."

Umm, excuse me...WHAT?!

April then looks at me and said, "Oh, did you forget? It's your day for family presentation."

OK, as a matter of fact, I totally don't remember that AT ALL!!!

So, right after April walks away I gave Ansley and William a panicked look and and said, "We have family presentation! WHAT ARE WE GOING TO SAY?!!!" William said he would tell everyone that Bigdaddy was coming home from Africa today. I said awesome!

We got up front and I introduced us and prayed. Then we had to lead the pledges to the Christian Flag, Bible and American Flag. I know all three by heart, but I was so flustered I stared down at the page and read them word for word. I am sure I looked real intelligent. :-) My kids just played with the flags.

Then William stated, "Bigdaddy gets home from Africa tonight." That's it. William was done. Nothing further. So, I jumped in and said why our Bigdaddy was in Africa and a little bit about the ministry there. I then ended our "family presentation" with a quick disclaimer. I think I said, "Hello lots of people we don't know...we just bombed family presentation. Hopefully this shows you that you don't have to do anything awesome. It can't get any worse then this." :-)

After morning assembly the kids broke up into their classes to head to their rooms. I didn't know any of my kids schedules and or where to find them for art or science. I had Brian in tow because he isn't going to be in CC this year. He missed several weeks last year and just doesn't want to participate. So, we are not going to have him in a class of his own, but today he didn't want to miss out on the fun of the first day. He has stated that he will stay home every Monday with Daddy who will just have to work from home. :-)

After a good 40 minutes of dragging Brian all around the campus, and yet another emergency trip to the bathroom AND downing an 8 ounce water bottle in two sips, it occurred to me that I forgot to give Brian his DDAVP this morning!! I felt horrible.The poor boy!!! Yes, that completely deflated my super mom ego.

So, our first day of school was memorable. We had a great time and all four kids have lots of stories to share. Hopefully we encouraged some of the families that perfect is no where to be found. :-)