Monthly Appointment

Brian's counts continue to be good (given all he has going on) and his liver function is good too. After today's appointment we went over the infusion side and said hello to one of our favorite nurses that we miss. We hate not seeing her often but we are SOOO thankful that we don't HAVE to see her often. She had to get a wheelchair for another patient so she walked with us to the elevators. We enjoyed chatting with her and getting the update on another nurse from the infusion center that we miss.

Brian and Nurse Sherry

Update

The PET scan was never sent to Texas Children's for Dr. McClain to view. Fred went down to Sacred Heart and got it on CD to send it Fed Ex to Texas.
  After Dr. McClain and the Histio review board looked at the images we heard back on the findings. Apparently they were not able to merge the images to view things like you are typically able to do. Each individual image appeared OK, but not being able to merge made it difficult to really diagnosis anything from this particular PET scan.
   OK, all that means nothing to me, but Dr. McClain said we could redo the PET scan in Texas, but there was no sense of urgency so we could wait until we are there in April. We are taking that as good news.

The PET scan

                                       Brian had his PET scan at Sacred Heart this afternoon. He attempted it without sedation. They were fantastic and let him walk through what was going to happen and actually go see the machine before he was given his IV and injected with dye.  After given the dye Brian had to sit absolutely still for an hour. We watched Netflix on the ipad. The ipad is our constant chemo companion. Worth every penny!!

      

Brian "sat still" and did the entire procedure without sedation. I say "sat still" in quotes because I was in the room with him and felt like he was moving quite a lot. The tech said they got what they needed but we will see. :) 

We were proud of our boy for making it through the PET scan like a champ! Here he is posing in front of the machine. Of course blankie was with Brian too. Sir Blanks A Lot, Blankie, Kee-Kee- it has had several names through the years, but has always been within arms reach of Brian. I often think about my Aunt Carol stitching Brian's blanket together many years ago. She had no idea that the baby blanket she was making for her precious great nephew would be such a source of comfort and stability and would travel to so many things. Well, maybe she did. She saw me love on my Aunt Carol blanket for ten years. My blanket was so loved it was really shreds of yarn. Aunt Carol made me replacement blanket when I was a teenager. I have it displayed in Olivia's bedroom and my original blanket is in a drawer.

 Blankie is more than just a lovey. It kinda makes me want to learn how to knit (again) so that I can carry on the Aunt Carol tradition. She tried to teach me how to knit. My sweet Aunt Carol came over to my house a couple of weeks after Brian was born and spent a few hours with me attempting to teach me how to knit. I "got it" but being that I had a newborn and two other toddlers there wasn't much time for knitting. I don't really remember how to knit now. Anyway, Blankie and Brian made it through a PET scan without sedation!!   

PET SCAN & pictures

I am sorry it has taken me so long to get back on here and update. Thank you to the many of you at church in PC that asked my dad for an update. As he informed me yesterday, as did my mother in law, neither of them had the update. Apparently I forgot to tell them we had a date for the PET scan. I am so sorry. TOMORROW, Tuesday the 30th is the scan here in Pensacola.
   Please be in prayer for Brian the entire day tomorrow. It's going to be a long one. He may not eat after 4 AM. He may not have anything to drink after 10 AM.  He may not take his lunch time DDAVP for his Diabetes Insipidis. We'll see how that goes. We check in at the hospital at noon. They inject him with the dye at one, then I believe his procedure is at 2. We were told the PET scan could be anywhere from an 1-2 hours. By the time he wakes up and recovers from sedation it will have been almost 24 hours since he will have eaten last. My mama's heart was so upset about that. The nurse's response to me was that I should wake him up at 3 AM and feed him breakfast. I'm just going to end this paragraph right there. I think you can tell from my tone I am not happy about it.
  Here are some pictures from the last couple of weeks. It's our evidence that we have been BUSY these last couple of weeks.
Two weeks ago today Brian had his stitches from his biopsy removed from his head. He had two sites as two lesions were removed. One to biopsy and one for research. Fred, myself and Brian are all a part of some research that Dr. McClain's is doing for Histiocytosis. 
 

 Brian informed me that I was wrong and it did hurt worse than the biopsy. He expressed his displeasure by shutting us all out.

    At dinnertime he told Daddy that Mommy lied. Brian and Daddy talked as Daddy has also had stitches in his head. They both agreed that those of us that haven't had it done should not comment on the level of pain. :)

On Wednesday of that same week we went to doctors visit number 2 for the week. This visit was just a regular quarterly visit with Brian's endocrinologist. It went well.
   Brian still enjoys pressing the hand near the elevator. He has grown a lot over the last four years. Some people have adorable growth charts on their walls, others have a door frame, we have the hand button next to the elevator on our way to chemo.  
  

2013

 A little flash back...

2009

2010

and for some reason I cannot find a 2011 and a 2012 picture near the hand. I know we have them, I'm just not sure where on my unorganized picture files on my desktop. So, instead here's a cute one I found while searching for a 2011 and 2012 hand picture. It's too cute. I had to share it. Here's a picture of Brian and William from 2008. They were riding on Thomas the Tank Engine.

 Alrighty, back to 2013...

Our kids know the drill. They do such at great job at all of Brian's appointments and treatments. Here they are waiting quietly while Brian gets vitals.

  The afternoon of Brian's endo appointment was quite exciting for our kiddos. Fred called and let me know that he and one of his plant guys found five kittens under one of their work trailers. We of course had to go down and see them. After a couple of days when they noticed that no mama was around we rescued the kitties. We couldn't keep them for several reasons, but they kids enjoyed the time they did have with the kittens.

 

There are four kittens in this pile.

The weekend after the great kitty rescue (they are now at their adoptive homes)  we went to the pumpkin patch with some friends from church. We had a great time.

 Fred happens to be the world's best pumpkin carver. He never disappoints. Here's our 2013 pumpkin choices: a ballerina, an airplane, Batman and Robin, & Rapunzel

After our pumpkin patch weekend, we started the next week (last week, Monday Oct. 21) saying goodbye to Daddy as he headed out of town for four days for work. We stayed busy with Tumbling Tuesday...

a field trip to the Planetarium at Pensacola Christian College...

 texting Daddy pictures of ourselves...

and snuggling Daddy when he got to come home one day early because bad weather canceled his fishing trip...

Throw in a couple more doctors appointments, homeschooling and keeping a house running with clean laundry and meals, and you have our last two weeks. We have stayed very busy and we are adjusting to Brian being on chemo again. He isn't getting sick, but he gets very emotional and tired. He was proud this past Thursday to show off to some friends that he could swallow all six chemo pills at one time.
   We are PRAYING that the PET scan does not reveal that any changes need to be made to Brian's chemo meds. His other options are all infusions. That would require him getting another port implanted. We do not want that. We are praying that he can stay on the oral chemo. Thank you for your love and support for our family. We appreciate the many believers that are lifting our family up in prayer.

Here is some cute art work Brian drew during church. Makes my heart smile.

  "Shout for joy, you heavens; rejoice, you earth; burst into song, O mountains! For the Lord comforts his people and will have compassion on them in their suffering."
-Isaiah 49:13

Our Trip in Pictures

Our hotel was across the street from Texas Children's hospital. It was SOOO nice to be able to walk over to hospital. We sat outside of the Starbucks by our hotel and ate breakfast. The kids enjoyed the busy downtown Houston street.  

 

Brian's first appointment was meeting with a couple of dermatologists to look over his skin. The waiting area had a mirrored room the kids enjoyed.

After meeting with the dermatology we went back out to the waiting room to wait for Brian to be called back for his biopsy. He did so amazing through the entire biopsy that the nurse handed Brian two fistfuls of treats and toys. He was quite proud. He didn't even realize he had stitches in his head.

The eyeball bouncy ball was a favorite.

   The appointment with Dr. McClain was next. Brian gave enough blood to drain his body. Obviously, not really, but it was a lot. He's a trooper!

When Dr. McClain came in the room he asked Brian several questions then decided we needed to go straight down to radiology and get some X-rays. There were some technical issues with the computer system and perhaps they had changed some codes for ordering specific images (without telling the doctors) so we sat in the room for quite some time watching Dr. McClain try to figure out how to order what he wanted to be done. Fred and I chuckled because Dr. McClain ended up writing what he wanted on a blank sheet of paper and signed it. He included his pager number and told us to head downstairs. In the meantime, Brian was getting restless so I gave him my phone. He took several pictures.

The view from the 14th floor.

We got down to radiology and changed Brian into his gown. There was a waiting room that looked like a dressing room in a department store. Brian was goofing off and managed to run straight into a wall and bust his lip. He was upset and just wanted to get out of there. Since the day was almost over (by this time it was well after 4) and most people had cleared out, I let Brian come peek at his siblings through the glass. They were in the main lobby waiting room for the entire eighth floor.  Right about that time it was Brian's turn to go back for imaging.

Again, Brian did an impressive job. We were in and out and headed back upstairs to see Dr. McClain by 5:15-5:30 PM. By this time all the office staff was out of the office. Fred flagged someone down and told them we were told to come back upstairs and see Dr. McClain.  We waited in the waiting room for a few moments and the kids were totally restless by this point. I believe Brian began milking the Winnie the Pooh cow. You can tell by the decorations that we were in Texas.  :-)

Dr. McClain came out and said that the report from the X-rays were not in yet (probably because it was after hours) but that from what he could see it looked good. Fred and I were a little confused and said, "Well, that's great, but what's on his head...we thought it was LCH again? What's going on?"
    Dr. McClain then casually stated, "Oh, yeah. I'm 100% confident that it's LCH. He'll be on chemo for six months for that...I was just talking about the bone!! As far as I can tell LCH is not in the bone right now."
     Picking up on our confusion and shock, Dr. McClain took us back into a room and talked with us for a little bit longer. He answered our questions, but we were so stunned that we didn't think of some of our questions until after things had processed later that evening. It was about that time that Brian's head was no longer numb and he started complaining about it itching. He got really clingy and fussy. We took the kids to the pool for a bit, but Brian couldn't get his head wet. The evening was kinda stressful as we juggled talking through everything, trying to accommodate Brian, and letting the other three burn off their pent up energy. I (Carrie) also started to feel poorly and notice a familiar rash I had earlier in the year. Yes, welcome back Shingles. The shingles virus lays dormant in your body after you've had chicken pox. I laugh because the doctor told me that it can be "brought back up" by stress.Yes, we've been VERY stressed the last 12 days. (I started the medicine for shingles last night and it makes me sick and dizzy. Hopefully I will be over shingles soon.) Anyway, back to Brian,  Dr. McClain told us that Brian should have a PET scan soon and in April '14 a new MRI. It's really too soon to do another MRI and notice the LCH involvement in the Central Nervous System if it's there. He really needs a good year in between the two images as things change so slowly. 
   Brian will begin his new oral chemo this week. He will need blood work every two weeks to check counts and liver function. While we are SOOO thankful that Brian doesn't need a new port and can take his six chemo pills one day a week for six months from home, we are ready to identify where LCH is active in his body and deal with it once and for all!!! We have suspicions that it is in the Central Nervous System. April of 2014 will be a telling time as we will be able to compare the two MRI images.
Please keep Brian in your prayers as he begins his next chemo phase. We will keep you updated.

More Chemo for Brian

We are in Houston at Texas Children's Hospital. Brian had an appointment at 1 today to biopsy his scalp. Things were running a little behind schedule and we didn't get up to the 14th floor to see Dr. McClain until a little after 3. After talking with him for a little bit he sent us straight down to radiology to get some scans. When the x-rays were complete we headed back up to the 14th floor to talk to Dr. McClain again. At this point it was after 5:00 and the office staff had gone home. Dr. McClain talked with us more and we discovered Brian will need six more months of chemo. We are VERY thankful that he is able to do this specific chemo drug orally rather than an infusion. That means no port which is an answer to prayer, but Brian is going to require chemo that is known to lower counts. I will update more thoroughly and add pictures when we get home, but I know several of you are anxiously waiting for an update. Thank you for your faithful prayers.

Prayers Appreciated

    Several weeks ago we found some bumps on Brian's scalp. Immediately we called the oncologist and asked to be seen. His nurse let us know that the he said we didn't need to come in, just to watch the scalp and he would see Brian at next month's appointment. Fast forward a couple of weeks and we take Brian to a well child appointment with our pediatrician, Dr. Foland. We scheduled it a couple of months ago when we decided that since Brian was done with chemo and we were moving into a more normal time period that it was time to get him back established with her. At the beginning of Brian's diagnosis she had sweetly said that if it helps Brian to have one less doctors appointment then don't bother bringing him in for well child checks. Other than the appointment back in July for Brian's eczema right before he had his port removed, he hadn't been to the Pediatrician for an appointment about him in four years. Last Wednesday at the well child appointment she noticed the bumps and was obviously as concerned as we were. She called the dermatologist that did Brian's biopsies both four and three years ago and set up an appointment to get another biopsy. We were devastated because we already knew what all this meant.
   This past Monday we took Brian to see Dr. Watson for his biopsy. When asked about Brian we told her about his eczema that wasn't really going away. She could see it and knew right away that the scalp and the "eczema" were both Histio. Dr. Watson didn't even biopsy the scalp. She was so positive it is LCH again. Her recommendation, and our desire, is to go straight to Texas Children's and see Dr. McClain. We have an appointment in Texas for next Monday, but should hear back today if we need to plan to stay for multiple days to run more tests and scans. We will keep you updated as we know more. Right now please pray specifically that maybe, just maybe we can treat Brian with something other than chemo. He is so sad at the thought of another port and more chemo. It's been a very long four years.  

Last Wednesday when the pediatrician confirmed what we had suspected, Fred and I were very upset. That evening at our church prayer and praise every song was speaking to our hurting hearts. I talked with a sweet friend, who is also dealing with her own illness and possible additional chemo, about the song All Who Are Thirsty. The chorus Come, Lord Jesus, come is the prayer of our heart. We have a longing and desire for our Savior that deepens with each step we take in this life. Psalm 42 is on our hearts. We do not question His love for us or His faithfulness to us, if anything it is more confirmed in our life. But our hearts still hurt for Brian.

Some of the songs we sang: It is Well With My Soul, All Who Are Thirsty, He Knows My Name

    

 Majority of our church was in tears last Wednesday evening. We have a lot of illness and pain right now. Not just in our family, but there are several families in our church with heavy burdens right now. The tears shed with our family encourage us as we know we are not alone. God reminds us of HIS presence through the body of Christ.

Our sweet small group on Sunday evening spent time in prayer for all the things going on in the lives of our church family. The children were asked to write a prayer or a praise. Brian drew this picture:

 It's a picture of himself on a hospital bed with a doctor beside him holding his port. He said it's a praise that the doctor took his port out and he doesn't want another one. As you can imagine several of us were in tears. It's been a difficult few days and we imagine the coming days will also be a challenge. We plan on having EVERYTHING that requires the eyes of the doctor to be done in Texas. We want Dr. McClain to be the one looking at Brian and making decisions. We know how hard and how costly this experience was here in Pensacola with the hospital down the road. We get overwhelmed at the thought of going through all of it again and in Texas. One day at a time. HIS mercies are new every morning.   We appreciate the prayers.

He Has An Extra Curricular Activity!!!

Many of you may remember me making mention of the extra curricular activities in our house. The conversation went something like this, "Ansley has dance and piano, William has guitar and piano, Olivia has dance and piano...and I have chemo!!"
   Yes, Brian would happily shout that he "gets to do chemo". He just hasn't had the energy or desire to do anything. Legos and video games have been his thing. Well, getting that port out has been a life changer for Brian. He is THRILLED to run around and be rough and tumble with his friends.
    On Tuesday evenings Olivia has a dance class from 4-5. At the end of the class the dance teacher instructed the students staying for the tumbling class to sit against the wall. Olivia sweetly asked if she could stay because she has wanted to take gymnastics for quite some time. We haven't looked into it too seriously because we have not been able to add one more thing to our schedule. I am very protective of our time and do not over schedule us outside of our home. It's something I have had to do because of Brian's illness, but now I treasure it. Anyway, I got permission for Olivia to try the class out. While standing outside watching through the window I noticed a little boy in the class. William and Brian expressed interest and the one little boy's mom overheard. She looked at me and said, "Oh please do let them go in. My son would love to have more little boys in the class." I asked for permission to send my boys in. It was an instant hit. The teacher is a male, coach Dale. Our boys LOVED every second of the class, so much so that they have renamed our Tuesdays. Tuesday is our Classical Conversations day and it has been the highlight of our week for years. Apparently it has moved to the back burner because our three tumbling kiddos now refer to Tuesday's as our Tumbling Tuesdays.

  The class will not be this large. Apparently several parents heard "try it out" and sent their kids in there. We are thankful that our three got to slide on in and be a part of this class. We LOVE In His Steps. It's not just a studio were they learn some music, dance and tumbling, but it is a ministry. (We do all of our extra curricular activities at IHS.) The teachers are pouring their hearts and their love for the Lord into our children. We love that our boys have another positive male role model. Coach Dale is also a pastor. :)
  So, hooray! for Brian being able to say he does something other than chemo!!!

Back to School 2013

Here's our crew posing for our back to school 2013 picture.

Ansley 4th grade, William 2nd grade, Brian 1st grade and Olivia Kindergarten
Both of our boys have summer birthday's and we chose to have them be the oldest in their class rather than the youngest. I polled no less than 38 mama's of older boys and THEY ALL said the exact same thing...give your boy the extra year. We've never regretted that decision. I often get asked why it matters if we homeschool. It matters because we like to keep our children in line with tradition schools if for some reason they should have to be enrolled. We have learned from our experience with Brian's illness that you do not know what the future holds. 
  Our kids get excited for back to school time. Yes, we homeschool, but we are a part of a community that meets once a week. If you ask our kids Tuesday's are our "real school" days.They miss our Classical Conversations community during the summer and wish we met year round. We do school year round at home. Because of life the last four years we really can't take a traditional summer break. This past year we did our school week along with Brian's chemo schedule. Three weeks of school and then one week off during the chemo week. It works for us, but I must say I get burn out and want to take a traditional summer break. So even though we school during the summer, it is very relaxed. Here you can see Brian working on some math during the summer.

Woody from Toy Story

Buzz Lightyear

Turbo

Best Buddies

William and Brian are best buddies.