Update with Pictures

Fred is back to work after six weeks at home on short term disability. Of the past eleven years and I think he has called in sick once maybe twice so I wasn't too sure how he would do being out for six weeks. I was mighty proud of him because while he did answer the phone and field some work from the house, he did a great job following doctors orders for recuperating.

Here are some images of Fred's back now, after his spinal fusion.

                                  Pretty nifty, eh! (Quite pricey too!)

Brian had another IVIG this week. His counts were so low he needed the immunity boost.

He asked me who was going to watch the kids while we were in the hospital and I told him Ms. Shelley. MAKE ME CRY MY EYES OUT...Brian looked at me sadly and said, "you mean they get to play at Griffin's?! I wish I wasn't the one that always had to go to chemo!"

Yes, rip my heart out and make me sad for him. So, that would be why we purchased Cars 2 secretly the night before and surprised him when he got to the hospital. Wouldn't you know it the oncology wing was full so we were in the regular peds unit and what a disappointment. It's like the difference between staying at the Motel 8 verses the Plaza. Obviously the Pediatric Oncology wing is the much nicer one. So, when we got to our room we discovered the DVD player was broken. Brian ended up watching Cars 2 on Fred's laptop.

Brian is still afraid of the bed so here was his set up for the day.

Fred still had to work so after we got in and settled he left and went back to work. Brian was absolutely silent and when I tried to talk to him he would just say "I don't want to talk right now."
In between his Cars 2 viewings he played with the iPad and made some videos. I over heard him saying "Hi, this is Brian. Here's my Cars 2 movie. I am at Chemo. My Daddy left me. He went in his car. I am all alone."
  Again, rip my heart out. I called Fred who flew up to the hospital in flash and stayed with us the rest of the day. Brian was so happy to see Daddy he even got in the bed with Daddy.
We of course talked to Brian about all the above, but quite honestly we were just thrilled because if you remember Brian used to get so angry at Fred that he wouldn't talk to him. Brian wouldn't even acknowledge Fred talking to him. If Fred said, "I love you Brian." Brian would look away and say, "I love you Mommy." We are way past those days, HALLELUJAH, and Brian is a total Daddy's boy.

(The bear Fred is holding was a gift from the UWF Rugby team. They came around saying hello and giving gifts. They wanted a picture with Brian but B said "NO! That makes me scared.")

Our newest drama is poor Miss Olivia Eden. She and Brian were fighting yesterday and he pulled a scarf she was standing on which caused her to fall on her mouth. She tore the frenulum labii superioris and somehow managed to pull a tooth down and push the gums up. She might have permanently altered her gum line and we are still watching the tooth to see if it is going to die. And oh my goodness the amount of blood!! Drama, Drama, Drama. We should write a book about living with the Schreibers. Never a dull  moment. All this happened after we returned our late library books. They were due the day before but we were unexpectly at the hospital all day. As I am asking the lady how much we owe I see my boys scaling a statue. Yes, the Schreibers are always full of entertainment.

Here is Miss Olivia at the dentist. She was quite fussy and demanded to have my phone to play with and take pictures.

As you see from my picture of Olivia it wasn't worth the scene we would have made so here are Olivia's pictures from the dentist.

The joy at the end of this day was the left over cookie cake that Shelley had made for us the day of Brian's IVIG. Oh my goodness was it wonderful!!! I might have eaten about six pieces...

Update 9-27

Thank you all for your prayers during the last couple of weeks. Your calls and e-mails letting us know you love us and are praying for us are such an encouragement. Fred is doing well. His surgery was suppose to be two hours but it ended up being close to four. As the doctor told me "everything was  mess in there." Because of all the scar tissue and herniated disc that was "all over" the doctor said that there ended up being a tear in the dura, but he stitched up the dural tear real tight before there was any leaking cerebral spinal fluid. Because of the tear Fred had to either lay flat or stand up straight, no sitting for the first couple of days. Even so, it was a huge praise that there were no complications and no leakage of fluid b/c of the tear. It could have been a real set back.
  Fred is continuing to do well, he has a back brace that he wears when he gets up for more than a trip to the bathroom and he stays in bed most of the rest of the day getting up only to walk around the house for his exercise. Yesterday we took a quick outing to the christian book store and Barnes and Noble to look for Fred an audio book. But the 30 min excursion was too much and we realized he isn't quite up to all that yet.
  And on to Brian... His scan results from last week revealed that he has a lesion on his left femur. That changes his diagnosis from single system to multisystem. We do not know what this means as far as treatment as we have not met with the oncologist and don't until next week. What we did find out was that the lesion was there in April of 2010. The radiologist went back and looked at Brian's old scans from April of 2010 and saw why he missed the lesion. Apparently the image was not clear because Brian didn't sit still. Now, having the new images from last week, Sept 14 2011, and going back to compare to the April 2010 he was able to recognize and make out the lesion and determined that it is not new, it has been there and it has not changed in size. So many thoughts go through my mind when I hear that. Number one, honestly, a bit of frustration that they didn't get a good image in April of '10. If you remember those are the scans that helped make the determination that Brian was "good to go" and cleared to have his port removed after completing his first round of chemo. If you didn't get a good image, do it a second time!!!! Anyway, thought number two is "well, that explains why the almost immediate reccurrence. We never dealt with the disease complelety. It didn't 'come back' it was never gone." Thought number three would be that praise the Lord the lesion has not grown or spread in the last year and a half. That's a good sign.
  We will keep you updated as we learn more and move forward with Brian's treatment. Thank you for your continued prayers and love for our family.
 On a totally random side note, I have always like medical shows and the like. A month ago or so I was watching some of my episodes of Mystery Diagnosis that were recorded on my DVR. There is an episode titled The Lady that Saw Pink (Season 7 episode 8 originally aired Aug 17, 2009). One of the story's from that episode highlights a case of a little girl with LCH. I cannot even begin to describe to you what I was thinking and feeling as I watched a TV show called MYSTERY DIAGNOSIS that featured my child's illness. If you look it up and find it airing soon you should watch it. It really explains Brian's illness well.

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 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.

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. 

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!