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!!   

Update and Scans

Brian had X-rays yesterday to take a peek at his bones. If all is clear then he will be approved to have his port removed. We are obviously excited, but ask for continued prayers. Brian has not received chemotherapy treatment since the first week of April (2013). We believe that he is doing well. He looks great and has tons of little boy energy. That's something he hasn't had much of the last four years! So far, no new LCH symptoms. We we told by Dr. McClain that it would be a less than 20% chance of a recurrence. If LCH is active and going to do more damage it would be in the bone. 

    Brian's diabetes insipidus is being manage with several pills multiple times a day, and he is champ at swallowing his DDAVP. 

    In April of 2010 Brian had his first port removed after six and a half months of chemo. His first couple sets of scans and bloodwork looked good before he started showing symptoms again. That is when in September of 2010 he had his second, and current, port implanted. While we are thrilled to get it out of him, we remember(and so does he) Brian asking,"just two ports, right, Mommy and Daddy?" So getting his port removed is coupled with both excitement and some anxiety. 

  Please keep our family in your prayers. It means so much to know that we have an army of believers supporting us and standing with us! 

 Love, the Schreibers

Here is a cute picture of the kids.

And some pictures of Brian's X-rays

When he's nervous he starts off wild and disobedient...

then he moves to scared and clingly. 

 

They are always so great to let Brian peek at his bones.

 His cute little hands

his sweet little feet

In this one you can see his port line

The hallway from the waiting room to the imaging room has art from students at local schools. Brian likes these monsters the best. He wanted pictures with his favorites. We are hoping and praying that our trips down this hall are dwindling down.

Update Nov. 2 2012

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

 

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

 

 

 

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

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

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

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

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

 

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

 

 

 

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

 

Unnecessary drama.  

 

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

 

 

 

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

 

 and pushing him on back...

 

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

 

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

I thought this one was pretty creative.  

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

Another ER visit

Saturday night we added another ER trip to Brian's journey through chemo. Fred and I both commented on how amazed we are that we were able to go the first two years with absolutely no ER visits or hospital stays, to now monthly ER trips with extended hospital stays. (Thankfully no hospital stay this month!)
  Anyway, Brian was running a fever of 101.8, 101.6 so we had to call in. The on-call oncologist told us to head to the ER for blood cultures and antibiotics.
     We are so grateful that one our friends from CC moved right around the corner in our neighborhood last October. It has been fun to go on walks and play at the parks. This past Saturday when we had to head to the ER it was such a blessing to call them and drop the kids off. I believe it was a 17 second detour.  :-) Thank you Morgan family for taking care of our kiddos.

   Once we were in the ER our nurse asked us what kinda port Brian had. When we told her the brand and type of port (I have a card and booklet I carry in my purse) she looked perplexed. Things kinda went down hill from there. Somehow Brian's tubes of blood for the lab got lost. We couldn't just draw new labs because by that point he had antibiotics in his system. The nurse assured us they would find it and it would all be OK. Fred and I kinda strained a smile.

Brian enjoyed a red Popsicle and of course the ipad.

 
  Eventually they did find the blood and said that Brian's ANC was at 700. (500 and below is neutropenic and requires a hospital stay). Brian was released and we JOYFULLY went home.

Today Brian is feeling fantastic. He and William are playing ninjas (with blue painters tape on their faces?!?!).  His counts are low, so we are staying at the house, avoiding germs. Just because Brian's counts are low doesn't mean that he feels bad, but that his body is unable to fight an infection.  Exposure to an infection could cause Brian's counts to lower even more and require a hospital stay. So, we are keeping it at the house this week.  :-)

 

X rays 7-18-12

Today Brian had some X-rays of his bones. He did great waiting. The ipad is our constant chemo/hospital companion.

    The tech that was positioning Brian was obviously a newbie and kinda young. When we first got in the room he asked me what was going on with Brian and why were we coming in for X rays. It was kinda mean, but I looked at the fresh young lad and said, "Brian has Langerhans Cell Histiocytosis." I knew the young man had no idea what that was. His blank stare confirmed my suspicions. I let him know that not too many people have heard of it and it is a rare disease. He kinda relaxed then started to position Brian. For some reason Brian did his scans with new positions. I am not sure if that is because he is older and more capable, or what, but typically he does everything laying down and today he did not.
 
 After several minutes and few different positions, I noticed that one of the three ladies that kept coming in and out of the room was correcting the tech and offering more instruction. She then whispered to me that the tech was new and he was getting graded on this. A few minutes later she commented that the tech got lucky because Brian was an unusually cooperative child. She said most of the children have to be chased around the room and repeatedly begged to stay still. I laughed and told her I could go whisper in Brian's ear to be silly for a little while to see what the new tech would do. The lady laughed but said no thanks.  :-) Brian did outstanding and we were in and out in a half an hour.

After his scans Brian always enjoys peeking at his bones. They are very sweet to let him look at the pictures.

Here's Brian's head.

And the sweet boys hands.

We will hear the results from the MRI (from last week) and the X rays at Brian's next chemo appointment.
 

MRI

This morning Brian had a MRI of his brain. Because he is five and not going to sit still in a tube for 45 minutes, it was done with sedation. Brian did well. He is still a little "wobbly" as he would put it, but doing well.  
    Because Brian was getting sedated he could not have anything to eat after dinner last night and nothing but clear liquids throughout the night. This morning he was cut off from clear liquids at 8:00 am. Brian didn't get taken back until almost 11am this morning. He's quite a trooper. We gave him an extra DDAVP pill this morning for his DI to help him through the no drinking thing. I think it helped.

 We are not expecting any surprises from the MRI, but please be praying that nothing has changed. We will probably not hear the results from the scans until Brian's next chemo appointment in three weeks.

Here is a picture of Brian from this morning. He was waiting for his turn to go back and he was getting a bit anxious at this point. We were thankful for the distraction of the Buzz Lightyear car thing in the waiting area, even though Brian is a bit too big for it.  :-)

Lots of Thanks!!

 I am totally falling behind on the thank you notes. Quite honestly, I am not sure I am going to catch up. Please forgive me and allow me to just send a shout out to the many people that have blessed our family. It has been so wonderful to know that the body of Christ is standing with us and we are not alone. We appreciate the prayers, e-mails, phone calls and gifts letting us know you love us. We are extremely grateful for all of you.

  Thank you for your sweet packages full of treats for the kids and gift cards for us to use during weeks like that last few. You have no idea just how amazing it has been and how much it has helped.

 Thank You to:

J and KASY Hayes ( YOU get a bold, girl!!)
Aunt Carol
Our dear church family from Saint Andrews
Aunt Crissy and her family
M, J and C Teplicek
D Hayes
The Beach family
D & L Morgan
A & A Morgan
S & L Scott
T & E Keys
S & L Johnson
The VanMeggelen family
The Cokers
C & C Swanson
S & F Swanson
J & S Andress
The Jinks family
R & J Young and family
F & B Skerratt
D Fouraker
J Fouraker
J & C Robinson
D & K DeVries
P & A DeVries
A DeVries
R & C Rowell
L & L Allen
R & M Branch
C & J Wilcox
K. Leamons
T & M Poole
T & A Lucas
B & J Daughdrill
T, D & A Willard

I am going to go ahead and apologize, as I am sure I have left someone off. Please know it is not intentional. I am typically pretty organized but when Brian is in the hospital, all organization of the thank you list goes to the way side. I try to rely on my memory, but that has proven to be loosing its effectiveness.  :-)

We are home!!

Brian was able to come home from the hospital with home health care. This is basically a repeat of several weeks ago. We are giving him Vancomycin every eight hours through an infusion with a rental pump.
   We were suppose to leave Monday for Disney World for Brian's Make A Wish Trip, but that is looking like it is not going to happen. We have an appointment with Hem/Onc on Tuesday to follow up with blood work. I will let you know more as we find out but for now please pray that somehow we are still able to take Brian's special trip next week.

  Because home health care could not deliver our medicines to the house until the evening, Brian had to stay in the hospital to receive another dose of antibiotics in the afternoon. We ended up staying at the hospital until 5:30 last night. We were SO glad to get home.
  
   Brian had lots of time to kill and the day was long. One of the neat things the hospital does is let kids paint ceiling tiles to decorate the children's wing. One of the volunteers that plans activities for  the children came by and asked Brian if he wanted to come play in the play room. When we got down there he saw a stack of ceiling tiles all spread out and some paint (some kids had painted earlier in the day) and he said he would like to paint. The lady sweetly said yes. She got all the paint and brushes for just Brian. He enjoyed himself so much and was quite silly.

example of some of the ceiling tiles

more tiles

Brian, the artist, at work.

Mommy thought to add Brian's handprint, but it only lasted about two minutes before it got covered in paint.

Mr. Silliness showing off his work.

The final product.

Still here...

Brian is still in the hospital. Here's a quick update from last week for those that haven't seen the emails. Because of the holiday Brian's chemo week was Tuesday to Friday. The doctor adjusted the doses so that Brian received the same amount of chemo he would normally receive in five days, but this week it was given in four. Wednesday evening Brian was running a 102 fever with chills and throwing up. (day two of chemo, just like last time) we called the oncologist on call who told us to head to the ER. Brian's blood was taken to check his counts and some cultures run to check for the presence of bacteria in the port. We were told if Brian's ANC was above 500 he would be given antibiotics and allowed to go home. Thankfully that is what happened.

Thursday we went to chemo as normal. Thursday afternoon/early evening Brian did not feel well but was not running a fever and was not throwing up. Friday morning as we were getting ready to head to chemo we got a call that Brian's cultures from the ER were positive. We headed to chemo and saw the doctor to ask what we should do. He told us to receive chemo as normal and then Brian was to be admitted to the hospital. We have been here ever since. Brian has been receiving vancomycin and in between doses he has been given an ethanol lock.(alcohol in the port) We are hoping this cleans the port of bacteria so that it does not need to be removed. We should know more today.

 Thank you praying for our family. This has been very trying on our family. Both Fred and I are torn as we want to be two places (well Fred has the pull of three places as he has to work...) all four kids are ready for Brian, mommy and daddy to be home. We are grateful that Fred's parents are here. They came to visit and see the girls ballet recital. It has been a blessing to know that we don't have to shuffle the kids all around for several days. We are thankful they are getting some time with their grandparents and their grandparents are making sure to shower them with love and attention. Please pray that Brian gets to go home TODAY and that we don't have to have the port removed.

Sweet tired boy. Little bit of a reaction from the antibiotics

still tired and only wanting to eat tomato soup

playing in the closet

Day three and feeling better...checking out his meal

watching netflicks on the iPad

still loving the iPad