At Chemo

On Friday Brian had an infusion and some blood drawn for labs. Now that he has his surgery behind him we can move forward and enjoy Brian's new chemo/clinic routine. We go to the clinic once a month for an infusion and labs. At home Brian is taking two different chemo drugs orally. One he takes daily and one is once a week. Brian was thrilled to find out this past Friday that his next clinic appointment (which means getting his port accessed) is not until Jan. 14th.

 On Saturday (Dec 18) our family went to the Gulf Coast Wings of Hope Christmas party. It was such a good experience for Brian to see his two doctors outside of the clinic and hospital. He was really nervous and excited, but it was really good for him because we have heard lots of chatter from him about Dr. Chatch and Dr. Schwartz since yesterday's party.  I will do another post in the next couple of days all about the party and include some pictures. It was a really good experience for our family. It was nice to meet other families that have had a child go through chemo.

Here is a picture of Mommy and Brian from this past Friday. We were in the play area picking out some books to take back to B's room. His monthly infusion is an hour long. It's kinda sad to watch Brian walk with his blue pump. He knows how to move with out getting his tubing tangled. Definitely one of those things I never thought we would have to do.  

Happy!

I could title this THANK YOU AUNT DABNEY or HAPPY BOY!!! Aunt Dabney won favorite person in the world award in Brian's book. She found this Wall E plate and just couldn't wait until Christmas to give it to him. He was one happy boy!

Brian's Surgery

Brian's surgery went very well today. We were thrilled with how great he did waking up from general anesthesia. Typically he wakes up fighting mad trying to pull of any lines that may be connected to him. Today he was crying and upset about his mouth being numb but he did really well after we repeatedly explained that would go away. Brian HATED having to wear the "butterfly and sticker" home the night before surgery. Mommy asked him if she could take a picture so that we could look back one day and say "remember when..." Brian didn't want anyone to look at his port but when Mommy took the picture he was all smiles. He's such a sweet boy. Even as he went in for surgery this morning he was as nervous as could be, but he flashed that smile to anyone that looked his way.

 The reason Brian was accessed the day before surgery was because his wonderful nurse wouldn't be at work at 5:30 AM when we had to arrive for surgery. The Hem/Onc clinic doesn't open until 8. We do not let anyone mess with Brian if they have no idea what they are doing. We've learned from experience that once we leave the fifth floor not too many people are familiar with a pediatric Bardport implanted port. Last year one of Brian's first surgeries left us dumbfounded as the nurse taking care of Brian in recovery asked US what to do and when to administer the Heparin. We looked at each other with total shock in our eyes thinking, "this lady is going to take care of our baby?!" 

  We have just enough experience under our belt that we know that we have options and we don't have to just sit and do what we are told. When it comes to her baby, Mommy will be sure he gets the best care and is not too shy to say to a nurse, "You're not doing that...let's get someone else in here." Mommy knows that we are Brian's best advocates and the only people that know EVERYTHING that Brian has had done or is about to go through. Sometimes it can be so frustrating to see just how little the right hand knows what the left hand is doing. You would think there would be a better internal communication system in the hospital. Anyway, today's experience was not that bad. Brian's nurse in recovery admitted that she didn't know about children's ports and needed to ask someone what to do.She called Brian's nurse on the Hem/Onc floor and got the information (by this time the clinic was open). When she attempted to deaccess the port she forgot to clamp the line and blood came pouring out. Mommy freaked out, as that had never happened before, and was ready to say STOP. The recovery nurse left the room to get more Heparin. During this time Mommy calmed down and Daddy explained why that happened. After a second conversation with Brian's Hem/Onc nurse the recovery nurse attempted to deaccess Brian's port again and did well. It was stressful. That would be the theme of our life right now...stressful.  

B at home last night.

At 5:30 AM we headed to the hospital. Brian's surgery was the first on the books at 7. We passed the time playing with Wall E toys that Mrs. Zimmerman gave Brian. Thank you to the Z family. Brian LOVED LOVED LOVED his gift from you guys. He was upset that Mommy forgot to grab the Wall E comforter to bring with us to the hospital. As soon as we got home he snuggled up with Mommy and all his Wall E toys on the couch under his Wall E comforter. Then when he took a nap on his bed he slept with his Wall E comforter. After his naps the Wall E comforter became a fort with the Chick Fil A box that Bigdaddy sent over with Grandma Hayes.
  Grandma Hayes watched the other three kiddos today and even successfully navigated her way to Pace and back home. She took the kids to their Classical Conversations Christmas party. They were excited that they did not miss out on their party and thrilled to show off Grandma Hayes. They had tons of fun with her today and even convinced her to stop by McDonald's on the way home for some apple dippers. Thank you Grandma Hayes for coming over and taking a day off of work. It was a blessing to us!

Brian's beloved Wall E comforter from the Zimmerman's.

. When we got the mail today Brian received a video from the Tinklenbergs. He and William were excited to watch the Veggie Tales Christmas video while the girls were at ballet with Daddy this afternoon. Thank you to the Tinklenberg family. That was very thoughtful and we have one little four year old that was thrilled to open his own mail.

There are so many wonderful people that have served us, encouraged us, helped us and prayed for us. We appreciate EVERYONE!  A special thank you to the Shanagahan's for dropping by the other day to bring us dinner. Of course they know how tough things have been as Kylee is our wonderful babysitter. She is in our home and has seen Miss Ansley "loose it". Kylee took a verbal lashing from Ansley last week. Kylee is so wonderful to know that Ansley is typically a sweet girl, but she is definitely going through a lot right now. We appreciate how patient Kylee is with our kids.

We REALLY appreciate our CC group. Those wonderful group of ladies have rallied around us and made sure we have a meal every week. It has been such a life saver. Thanks to Joyelle who coordinated that and stays on top of making sure everything is organized well.

The women's ministry at McIlwain gave our kiddos a wonderful gift bag of goodies. All four ripped through the bag like it was Christmas. I am not sure what the favorite gift was as they have enjoyed it all already. Literally, they have played with the play dough; they put the pill things in water to watch them grow into sponge shapes; they have used their snow man cups; and danced in the dark with their glow bracelets. Thank you to everyone that donated something for our little ones. We really appreciate it. We are excited about the pizza gift card too. Mommy wants to say a special thank you to Mrs. Yates who thought to freeze the Christmas Cookies until later when Brian can enjoy them too. It will be a couple of weeks before he can eat a cookie. He now has NO molars in his mouth. He has six teeth across the top and six teeth across the bottom.

Please continue to pray for our family. It is such an encouragement to know that we have a huge army of people in the body of Christ supporting us and coming along side of us as we take this journey.

I am adding this picture later then when the rest of this post was written. When I was getting him ready for bed I noticed his skin was really irritated by the adhesive from the dressing over his port. He has always had sensitive skin, but he really reacted to the bandage this time. I guess because he wore it for 18 hours.

Brian's IVIG

This morning Brian went to the clinic to have his port accessed and labs drawn. From there we walked to our floor in the hospital to be admitted. There are not many perks to being a kid on chemo, but at Sacred the oncology patients have a special unit that is a cut above the normal peds floor. Here is the doorway into the Oncology Unit. Notice the hospital floor in the first picture then you will notice in the following pictures the oncology unit is a bit nicer and newer. When we were admitted last year there were only six rooms. They have expanded to nine rooms. Brian remember that he had the red room last time. This time we were in the light green room. It was funded by Publix. Perfect room for us. Only thing that could have been a bit more "schreiber" would have been a Chick Fil A room or a Target room.  :)

Notice the ceiling tiles are painted by kids. They let their patients paint a picture and write their name on it.

Brian was all smiles and peeking out to see what crazy mommy was taking pictures of.

This is the playroom for the nine oncology rooms.

Here are Brian and Mommy sitting in the chair because Brian was SCARED of the bed.

Still in the chair.

Mommy's mission today was to get Brian over his fear of the hospital bed. He saw the Chipmunks movie and there was a scene that was in the hospital. Apparently Dave gets smashed in the bed because the chipmunks stepped on the remote and it made it go up and down and closed, then flat. Brian was convinced that he was going to be shut in the bed. He investigated it for a while then decided it was OK, but he didn't want to be on the bed if he didn't have to.

Brian tolerated the IVIG very well and was able to have it administered as fast as they could pump it in. They upped the dose of the infusion every 30 minutes. If Brian was to get sick or lightheaded, etc they would drop the amount down the the previous dose. Well, Brian never minded the increase and was able to have the infusion in a little over four hours.
   When he gets his port flushed he can taste the saline and he HATES it. He always asks for one of us to plug his nose.

He hates having the "sticker" removed.

We were discharged from the hospital and home by 5:40 PM. Brian took both his oral chemo meds tonight and didn't mind it one bit. They are both strawberry flavored. Because we are getting the chemo drugs made into an oral solution we have to go the Pensacola Apothecary to get them made by special compound pharmacist. Apparently not every pharmacy can do this because they need a special hood to vent the fumes, dust or whatever is expelled during the process of compounding the meds. This is so the pharmacist doesn't accidentally inhale what we are intentionally giving to our four year old. It's crazy how something can be very harmful to one person but helpful to another.
   Thank you for praying for Brian Robert today. The day went very well (for Brian). He's a trooper. His older sister didn't have such a great day. She gave our babysitter quite a bit of trouble. Not to excuse her horrible behavior today, but she is just six. She is not doing very well at handling all that we are going through. I know this is a public blog, but it's also our journal to remember this time. I don't want to paint it as super cheerful and rosy when it isn't. Times are stressful. Just to top it off my dishwasher died last night. Like I said stressful. I can guess what I'm getting for Christmas this year.

 Please continue to pray for our family. We appreciate all the prayers and e-mails of encouragement.We love you all.

Friday

Well, we just heard from our Hem/Onc nurse. Brian will go to the clinic on Friday for his port to be accessed and labs drawn. Then we will be admitted to the hospital. In the hospital Brian will receive an IV-IG. Since it is his first time to have one he will have to be in the hospital and it will take all day. We will be allowed to be discharged when the infusion is complete, but we were told to plan on it being an all day thing. Please pray for Brian as he is already nervous about this. He heard me talking on the phone with his nurse. He came in and crawled up on the church pew beside me  and sadly looked at me and asked, "Do I have to be hooked up to a machine again?"
  Please pray for Brian. He will get this boost just to get kicked back down again as we are suppose to start his oral chemo drugs this Friday. We will probably have to postpone his oral surgery. We will see how Friday and Saturday play out before we make that decision. Thanks for caring about our boy!

Still No News

 We are waiting to hear from the Hem/Onc nurse about Brian's counts. Yesterday morning I took him to the Pediatric Lab to get his blood drawn. After that we headed down to get X-rays that Brian has to do periodically to check for Histio involvement. I'm not a Radiologist but from what I saw it looked good except for the mouth area. :) We knew that anyway. Brian is scheduled to have oral surgery next week, but if his counts don't improve we will have to postpone it. I am just waiting to hear back from the clinic after the doctor has a chance to review yesterday's tests. I will let you all know what's up when we know. Thanks for praying for Brian.
 

Keep Praying

 On Tuesday we had Brian's blood work done to check his counts. The results came back on Wednesday and his counts were even lower than the previous Friday. We took him back this morning and the lab was closed. We ended up going downstairs to the diagnostic center (all of this is at the hospital) and it was a disaster. Poor Brian was poked several times and the lady fished around in his arm with the needle but never got blood. If Brian needs blood work that they don't get from his port we typically put some Lidocaine cream on him so he doesn't feel the prick. When the lady fished in the numb arm it wasn't too bad. When she moved over to the arm that didn't have cream Brian screamed. The lady was getting ready to move down to Brian's hand/wrist to fish around there and Mommy called a halt. Mommy said we were not going to keep "trying" but we would come back on Monday and go to the lab. Thank you very much. Mommy should have immediately protested as soon as she recognized the nurse as the women being trained in the lab on Tuesday. It was this lady's first week at Sacred Heart. Everybody needs time to learn and get comfortable, but little Brian will not be anybody's testing ground. He goes through so much already. Anytime we can minimize some stress and discomfort we do. So, Monday we will go back and see our lady, Miss Jean, at the Pediatric Lab. We will keep you posted.

  

These are old pictures of Brian, but it gives you a peek at some of the places he frequents at Nemours. They try to make it as cheery as possible.

The hematology/oncology clinic has a play area in the back near the infusion rooms. No children except patients have access to this area. It's different than the waiting room.

This picture is just adorable. This is from Brian's birthday in August. Grandma Hayes gave Brian a HUGE Woody doll and the Woody PJ's he is wearing. I included this picture because it shows what our Brian normally looks like. The steroids and chemo have made Brian look huge and swollen. It's sad to look at him now because he just looks like a sick child to us. This is our BB...

Some pictures of Brian

Here are some pictures of Brian at the hospital on Friday. He didn't have chemo on Friday but he had an hour long infusion of the drug Pentamidine. He doesn't understand that he didn't have chemo because they accessed his port. That is the bad part for Brian. He hates getting accessed. When you say chemo Brian thinks getting his port accessed. So whether he gets chemo drugs or not is completely irrelevant to him if his port is accessed. We are switching over to oral chemo drugs but we will still have to go the clinic once a month for Brian to get his port flushed and his Pentamidine infusion.

Brian's favorite part of the infusion. It says COMPLETE!

Brian's counts are low

Please pray for Brian as his counts are low. He was suppose to start his oral chemo drugs this past Friday (two days ago) but was unable to because of his low ANC level. He is considered Neutropenic. You can read HERE  about Neutropenia. Brian's counts are suppose to be above 500 to be able to receive chemo and his counts were at 480. We will go in on Tuesday morning for more blood work to check his counts and see if he will be able to start his oral chemo drugs this coming Friday. Until Tuesday Brian is to stay at home and we aren't to have people over. We were told that our normal home germs are OK, but new germs are dangerous.
    Brian is home bound and watching movies. Really he has been home bound for the last seven weeks. Brian hasn't wanted to go anywhere. If we were to go anywhere, even really quickly he would be asking to go home and whining about being tired within ten minutes of leaving the house. I took all four through the drive thru pharmacy to pick up some meds a few weeks back and Brian was crying to go home. He didn't even have to walk anywhere or do anything but the activity of getting in the car and driving there was too much for him. His little body has been so tired all the time. We think the steroid was causing his extreme tiredness and weakness. Now that Brian has weaned off the steroid (this past Thursday was his last dose, but he has been taking a tapering dose the past two weeks) he has had more energy and is actually doing things! He and William are playing and interacting (and fighting!) again. William LOVES having his buddy back. While he is still limited in his activity and can't really run or move too quickly he has improved. The last couple of months Brian has literally not done anything other than watch TV, SLEEP! or have books read to him. Coloring made him too tired. Now, he at least will sit and play Lego's or color with William. He still strains to bend over and looks pained to step up on the stool to brush his teeth, but he is trying to move around more rather than just sit on the couch. It's slow moving. Please keep praying.
   Brian's oral surgery has been scheduled for December 7. We will keep you posted. Thanks for praying for Brian Robert.

Pray for Brian

The chemo drug Vinblastine can cause constipation. Well, Brian has suffered with that on and off the last week and a half. His stomach got so bloated that he looked like a starved orphan in a third world country. We've been giving him Miralax and straight apple juice and he was going potty but this morning he was doubled over in pain and sweating. He kept complaining and crying so we took him to the hospital. He got some X rays and an Ultrasound done which revealed that Brian had an insane amount of gas in his abdomen. He is constipated and backed up. Every time he breaths he is taking in more air and it's just not coming out.  I will try to post the X-ray picture. It was kinda cool. Of course it wasn't cool for Brian because he could feel the balloon ball of gas in there! We are still giving him LOTS of Miralax trying to work the stuff out of his system.

The gray area on the right that is kinda shaped like a potatoe is a big ball of gas!

Catching Up

The last month or so of our life has been out of control. There are so many things going on (things not even directly related to Brian's illness) that cause stress and  make life difficult. I will not share all on this blog but the long and short of it is pray for the Schreiber family!

We have called for reinforcements and Fred's mom has been here a week and will be here for three more weeks. It has been so nice to not have to exasperate all our friends to help us or to have to pay for child care. It has been such a wonderful blessing to be able to just go and do something without having to plan childcare. Fred and I have enjoyed being able to do something by ourselves too. Even if it is just go grab Starbucks really quickly. (THANK YOU, Aarin, for the generous gift card!!) I have been able to catch up on doctors appointments for myself that have been put off due to having so many children so close together. In the last week I have been able to get my teeth cleaned, get four of six cavities filled and go to the girl doctor for my yearly. (Apparently you can brush your teeth too hard and brush the enamel right off. I have done that. It's really not cool.) I am feeling some sadness for what Brian is about to go through in the next couple of weeks because as I sit here and type I have a numb tongue and cheek all the way up to my nose. Of course Brian's oral stuff is more involved, but I remember last year when he woke up from having his two year old molars removed he didn't understand why his entire mouth was numb. He kept rubbing his face like he was trying to get something off of it. Well, here we go again. He has to have his one year old molars removed in the next couple of weeks. The bone loss in his mouth makes the gums recede because there is no bone for them to adhere to, thus exposing the entire tooth. When Brian has all four molars removed the doctor will do a biopsy of the tissue in the gums to check for the presence of LCH. Something to praise God for in all of the this is that last year when he had the two year old molars removed we were told that Brian might not get the permanent molars that would grow in after the two year old ones because they bud off of baby teeth. Well, when we had Brian's X rays last week we saw three of the four permanent molars growing under the gums. The fourth one could be there but we didn't see it because it was a bad picture. After Brian gets his one year old  molars removed next week he will have NO molars to chew with until the six year molars come in. It's kinda sad to think about looking into his mouth and eight of his teeth be missing but in the big picture this is so minor. 

  Just to give you a peek into some of the stress involved with things like this let me tell you about one of the most stressful aspects. Dealing with insurance. I spent two hours and a couple of days on the phone getting our oral surgeon authorized as an in network doctor since our insurance doesn't have one in the area. Then we had to get our medical insurance to authorize payment to the oral surgeon's office since this surgery is a result of a medical condition. After getting all that worked out, the oral surgeons office let me know they don't work with Blue Cross Blue Shield and we will be paying for the entire surgery out of our pocket in advance and then file a claim with Blue Cross ourselves. Now, it's just the oral surgeon's office, not the hospital and anesthesia so it will only be a little over $1000. Not too major, but given that we currently deal with Sacred Heart, Nemours, Anesthesia, the hematologist/oncologist, the pediatric dentist, the pediatrician, labs and the offices of whatever specialist we are currently dealing with, we are not in favor of having our money out there to be held and then returned to us four to six weeks later. 

 This is all just for Brian. In the past six weeks Fred has had two procedures for his back. So that has costs $$ too. PLUS, I have had my doctors appointments and mouth fixed up. I also need to have surgery in the next few weeks to repair some damage from when Ansley was born. All this info is just to give you a peek into how stressful the Schreiber house is right now. So, if we haven't called you back or responded to an e-mail hopefully you see it is not about you. :) 

I'll leave you with a picture of William and Brian. This is Brian's permanent spot when he is awake. He and William like to watch the show Dino Dan on Nick Jr. They are probably watching it in this picture. (Don't worry the boys have been told that the world is not millions of years old and dinosaurs are not millions of years old.)

Aunt Carol, notice that both boys have their blankets you made them as newborns. They are still very special blankies that we can't live without.

Life is Crazy!

Well, Brian's compromised immune system means that when he got the throw up virus he held onto it for 11 days. We spent several hours at the hospital a week ago getting Brian some fluids, an antibiotic and a prescription for Zofran to help him out.
Add to that some side effects from the Vinblastine and we've had some really rough weeks. Brian's latest side effect is that he has really weak legs. He is falling alot and then has a hard time pulling himself up.

ok...life calls. more later.

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.

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 do...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!!

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!

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.  

Brian's Second Port

Always a happy boy! Brian is so happy that when he is upset or really grumpy/angry it tears us up. He has such a great personality. Here is Brian on Wednesday, five days after surgery. They used the same site as the first port that we had removed almost five months ago. (removed April 30, 2010) The doctor said that he removed some scar tissue from the previous two surgeries- one to put the first port in and one to take it out. So, here is a happy BB showing off his battle wounds. 

Chemo & Steroids

Today we had our appointment with our Pediatric Hematologist/Oncologist. Brian has 30 weeks of chemo and steroids ahead of him. His steroids are 4 to 5 times stronger than the one he took last go around. Brian knows just how difficult this is on him and he remembers how much he hates chemo. He was so tuckered out today from the stress and build up of "the appointment" that he fell asleep in my lap as we chatted with the doctor. Brian ended up not having his first dose of chemo today as we are giving him another week to adjust to the new port and let the surgical wound heal. He will be starting steroids tomorrow as soon as I get the prescription filled.
  I am sure there is plenty more I could add or write but we are all just plain tired. This is emotionally draining and leaves us physically exhausted. More later.

Our Weekend

So, Brian has been getting a lot of attention the last few days. (Well, really, the entire last year.) This past weekend William has been sick with the throw ups. He has gotten some attention (read: normal level of attention for a sick child) and even got to sleep on the floor in Mommy and Daddy's room. However, William is our sensitive guy. Where Miss Ansley will demand your attention and tell you straight up that you are failing her, William will internalize his feelings and take everything personally. He can tell that Brian is getting some extra attention and "how are you doings?". William threw up most of Saturday evening and has been unable to eat and complaining about his throat ever since. While Mommy assumed that William's throat was hurting, she assumed it was just sore from throwing up so much. Mommy thought William was just searching for reassurance that we will give the same level of care to him when he is sick as what Brian is receiving. Since William was still complaining this morning and didn't eat breakfast, Mommy called the pediatrician. Turns out William has sores in his mouth and in his throat from some virus. Good thing we LOVE our pediatrician. I think we will be seeing her frequently this fall/winter as we try to keep the kids well so Brian can avoid hospitalization.  

This past Friday we were sent home with some sterile packages and instructions on sterile field and what to do to change Brian's bandages from his surgery. Apparently this is NOT the norm. I will not say which side, but we were dealing with the surgical nurses and the oncology nurses and apparently one side didn't provide weekend support (a doctor changing the dressing). We were left with the responsibility of changing a wound that CANNOT get infected as it is a line into the main artery. Apparently they didn't realize that we were still in shock about walking down this path again and probably missed half of what they said. This is just a peek into some of the stress we deal with. One of the instructions was DO NOT remove the steri strips. When we got the bandage off we realized there were no steri strips! WHAT?! It has been stressful. We try to lighten the mood and be silly when possible because stress levels have increased dramatically in our home the last few days. Here is a picture of the kids and me making faces in the mirror at the pediatrician's office this morning.



being silly at the pediatrician's office while we wait our turn



Brian's Best Friend



Brian (as Spiderman) and Ellie

    This precious little girl is Brian's best friend. One year ago when Brian was first diagnosed Ellie colored a picture and decorated it with Cars stickers just for Brian. Brian liked it so much that we taped it to his wall beside his bed. Today after church Ellie dropped by our house to give Brian another sweet picture and note. She looked through her coloring book for just the right picture for Brian. If you can see it is of Hello Kitty at the hospital and the doctor is giving her a check up.

 Brian's first picture from Ellie stayed taped to his wall for months and months! We still have it. It's wrinkled and torn and very special. Mommy had set it aside to go in Brian's scrapbook, but when the new picture was dropped off this afternoon Brian wanted them both taped up next to his bed. William asked Brian if he was going to marry Ellie since he likes her so much. Brian said, "No. I am going to marry Mommy, but Ellie is going to be my best friend forever."

Ellie's mommy told me that Ellie never forgets to pray for Brian and consistently reminds her parents to please pray for him. 

Deuteronomy 6:5-9  Ellie's parents do a wonderful job teaching and showing her God's love and His commandments. Ellie's love for God and compassion for others (right now specifically Brian) is such an encouragement. What a reminder to us adults as we see this four year old live and love. Mark 10:13-16  



Brian's special Ellie pictures next to his bed

Update Friday 9/24/2010

Today Brian had surgery to have his port implanted. He was NOT happy to go and it was a very difficult day. It started off kinda crazy as everyone we attempted to contact to watch the other three kids was not available to help. Fred had to stay home with them while we waited for Aunt Dabney to arrive from Panama City. (She's the perfect example of a selfless servant. God gave her a heart to think of others before self for sure!!) So, Mommy and Brian went to the hospital at noon and Daddy met up with us a little after 2:00 PM. As is typical for the hospital, they were running about an hour behind schedule. That totally worked in our favor today. We were fortunate that Fred arrived about five minutes before Brian went back for surgery. Fred got to hold Brian and reassure him that we were both there for him. Brian got Versed to calm him down before going back for surgery but they gave it to him about an hour before they took him back so it was starting to wear off. Mommy had promised Brian she would be with him until he fell asleep and there when he woke up. In the past when Brian has had a surgery they take him back at the height of the Versed drug working. So typically he would go just about anywhere with anyone and have no idea what was going on. Today he cried and got upset. He was reaching his arms back towards us as the nurse walked away. He was saying "Mommy, Mommy, can't you be with me in my room?" It was tough. Fortunately he doesn't remember that. Unfortunately Mommy does.  

The surgery went well and Brian now has a port in his chest to start chemo again on Tuesday. When he woke up from surgery he was crying and said "what's in me?" Brian was also really upset with Fred. Brian didn't want to talk to him or look at him. When I talked to Brian about why he was mad at Daddy he said he was mad because he didn't want Daddy to hold him down again. He knows that a port means chemo, and chemo means Daddy having to physically hold him down and restrain him to have the port accessed. It's just tough. Brian's four. We're praying that Brian will not need to be restrained to access the port this time around.

Brian before surgery. While we talked about his port he said to me, "Mommy, just two ports, right?" Meaning the port he had last year, the one he was about to get and then looking for reassurance that he would not need another one after this.

      




Photo by Brian. This is what he saw while waiting for surgery.


 

Brian was very grumpy and mad that he had to have a new port. Mommy and Brian were making faces to show just how grumpy we were about the port. The grumpy mommy face made Brian laugh. It lightened the mood a little bit.




Brian enjoying a little bit of Versed. That stuff totally relaxes him! (For the record he does the thumbs up thing alot. It's adorable. I didn't make him do that.)




Brian after surgery, but before he woke up in recovery.





Brian at home tonight. He got a new toy for being so brave today. If he keeps this medical track record going he will own every Toy Story character ever made really soon!