Saturday, March 31, 2012

Everything Changes...

Well, Thursday at 8:30 AM we met with Dr. Parmley and we have been spinning since. So, here's the scoop...
    As I mentioned earlier, Brian has been diagnosed with Central Diabetes Insipidus. This diagnosis is considered a relapse for Brian's Langerhans Cell Histiocytosis (or LCH). Dr. Parmley said there is a sense of urgency to get Brian's LCH treated. Those were his words...a sense of urgency. (The Holy Spirit totally took over and gave us self control because we sure wanted to say, "Well, there sure wasn't a sense of urgency last week. We couldn't get anyone in your office to help us!) As Dr. Parmely was telling us what this meant for Brian, he mentioned twice that he knew we had been communicating with Dr. Schwartz. I wanted to scream, "No, we have not. This is new news to us!!!"  We had not been communicating with anyone other than Dr. Kummer. He is Brian's Endocrinologist.
   So, we learned that Dr. Schwartz has been in contact with Dr. Kenneth McClain in Texas. Dr. McClain is the leading person in research and treatment for LCH. The protocol that Dr. Schwartz is going to follow to treat Brian is straight from Dr. McClain. On Monday Brian will begin a new regimen of chemotherapy. Brian will have chemo Monday -Friday for one full week each month for 12 months. He will have Vincristine and Cytarabine on Monday and Cytarabine by itself on Tuesday, Wednesday, Thursday and Friday. Then he will get a three week break to give his counts a chance to recover before he gets hit again.  Please keep our family in your prayer as Brian begins the chemo journey for a third time. Although this was blow, it was somewhat expected. (Well, I had suspicions, Fred was totally caught off guard.) My suspicions came from the fact that I just couldn't understand how Brian was considered OK if he was still having symptoms of damage from the disease (the DI) while on treatment. Brian's last dose of Vinblastine and Predisnolone were just three weeks ago. So, if he was still on treatment he would have received his next chemo this past Thursday (two days ago). His body didn't know he was "off treatment" yet. All that to say I didn't understand how Brian could be getting symptoms if the disease was under control. If the disease was not under control than more chemo was inevitable. So, here we sit. Brian had one weekend of "No More Chemo". We are thankful to God for the gift of getting to go to Orlando and Legoland when we did.
    Also, we learned that Brian does in fact have multi-system involvement. I am not sure if you remember but several posts back I put that he had it, then I put I obviously didn't understand LCH, because he doesn't have multi system, but single system. Yeah, that is a perfect example of our ups, downs and all arounds. Speaking of ups and downs, I have in the past lamented about Dr. Parmley. I take it all back. I have a new respect for him. Nothing about him has changed, but my perspective is different. I understand him now have a great appreciation for his minimal, no frills, straight forward ways. He's not interested in playing with Brian or getting to know him, but he is concerned about his health. I am happy with that.

That's the update. If you would like to read the journal about Brian's last couple of days then read on. It's just Mommy ramblings to keep an account of what we have walked through and how God has worked in our life.

We were sent on Friday for an MRI, skeletal survey, blood work and urine test. All these tests were ordered by Brian's doctors- Dr. Parmley, Dr. Schwartz, and Dr. Kummer. Getting everything straight at each location is a science. Unfortunately we know our way around the hospital and it was no trouble.

At the Diagnostic Center Brian had his scans. He is so brave. I took a picture of him because I wanted to show his siblings exactly what Brian has to go through. It's alot on Brian. I hope it will help them see why he behaves the way he does sometimes. Brian has a lot in his life that is out of his control. And he HATES it. No matter how much Brian hates chemo, doctors, hospitals, needles and medicine, this boy has such a great attitude. He smiles and is polite to everyone. He is such a sweet boy. I have noticed since Brian was nine months old that he just has a great personality. He has a special spirit about him that is just a joy to be around. People are drawn to his smile. He has never met a stranger. We've said that since he was a baby. The week Brian turned one year we started attending a new church. We put him in the nursery and I was kinda hesitant as to how he would do. When we went to pick him up the lady in charge had declared him her boy. She fell in love and said he was just amazing. When we moved one year later she was so sad to see him go. Every time we go back and visit she likes to say hello and give Brian a hug. She always sweetly says, "I know you probably don't remember me, but I sure remember you! You were the happiest baby ever and I loved having you around!!"
     God has given Brian a special grace to get through these things. He has something about him that others notice. The tech doing Brian's scans remembered him from a previous appointment. She laughed and said, "Oh, I remember you. You're the one that told me the names of all your bones." In our Classical Conversations group we had been learning the names of the bones in the axial skeleton. The tech was impressed that a new five year old was able to tell her Cranium, Vertebrae, Ribs, Sternum.

   After his scans we headed down to the ground level for the MRI. I believe it was around 10:20 ish when we checked in. Brian had not eaten anything since dinner the night before. Because of his D.I. he is not able to go without drinking anything for that length of time so he was given Gatorade, but was cut off from that at 9 AM.
   It was after 1 PM before they took Brian back for his MRI. For the life of me I cannot understand why a tech would see a five year old and a two year on her list (I know she knew both where waiting as she talked to us to let us know they were running an hour or so behind) and then take a lunch break. If the two year old and five year old can make it without food from dinner the night before I think you can work through lunch and eat as you go! I understand that a tech needs to eat too, but my goodness, let's try to schedule the little ones for the first appointment of the day!!
   OK, I will get off my soap box, because I could go on and on and on and on and get the point.  If Sacred Heart wants to become a leading Children's Hospital in the region they need to get some Mommies on their panel for planning and organizing. They do a very poor job of putting the children first.
   During our marathon wait with no food (we didn't want to eat in front of Brian) we got to meet a fellow LCH local. They were waiting for an MRI too (the above mentioned two year old). I am so thankful we got to meet Kara and Kohlton. I will have to tell the story of how we got connected because it was God's hand for sure. Right now the kiddos are starting to wake up so I will post that story later.
Brian after his MRI, still waking up from sedation.

Wednesday, March 28, 2012

Legoland and Update

We spent the weekend with our dear friends that are like family and went to Legoland on Monday. We had a blast.
Friday night we went to a dinner theatre at our old church. Our friend is the music director for the youth choir and she did an amazing job putting together the entire evening. We loved it! The boys (particularly William) were captivated by the music.  They liked when the men played the best.

 Brian is a sweetie, but when he is done...he is done!! I wanted to capture a picture of the four kids and he didn't want to. The picture makes me smile. It's totally Brian when he is tired.

See, Daddy had to carry him back to the van.

By Monday Brian was rested and ready for Legoland. At this point he was still drinking like a thirst machine and peeing every thirty minutes during the day time. We stopped for Brian to go potty on the way to Legoland at least four times. It was an hour and a half from our friends house.

All four kids were excited when we saw the sign!!

The day begins...

Right off the bat we saw Darth Vador and R2-D2 made of Legos.

We also ran into some super heros. We saw a Lego pirate show, rode some rides and traded mini figs with employees. It was a great day. We are super thrilled that we went when we did.

Quick update, Brian has started taking two pills now, one in the AM and one in the PM and has a MRI scheduled for Friday.

Thursday, March 22, 2012

12 Deprivation Test & Diagnosis

Last night was ROUGH. From 2 AM onward Brian was not allowed to have anything to eat or drink. He had his last cup of water at 1:50 AM. I was pretty much awake from that point forward. Every time I heard him stir I would bolt up and make sure he wasn't drinking from the facet in the bathroom. A couple of times I just made it as he was pulling back the shower curtain to get the nasty soap scum cup we use to rinse hair in the bath. He was planning to fill it up and drink from it. He was standing there caught with the blue cup in hand smiling like, "What? I wasn't going to drink from this!" Then as soon as I would take it away from him and say he couldn't drink anything he would cry and say "but I'm thirsty". I ended up putting the baby gate in the doorway of his room. During the daytime I am sure he would have just climbed over it, but in the middle of the night it worked.

So, at 8 AM Fred and Brian left for the hospital while I dropped the other kids off at a friends house with a load of food. I couldn't feed them in front of Brian. She was so sweet to feed our kids and watch them for hours, several days in a row!! (Thanks, April!!)  

Then I headed to Nemours and met Brian and Fred just in time to take his vitals and access his port. Then we headed over to Endocrinology and got settled in for the long day. Brian fussed a bit and when Fred had to leave for an hour and a half for an appointment for work, Brian fell asleep. He woke up for just a minute and transitioned from the "bed" to the chair. It didn't look comfortable.

Dr. Kummer stopped the test an hour early because Brian's sodium was high. He went ahead and diagnosed Brian with Diabetes Insipidus and started him on a low dose of Desmopressin each night. He told us to keep a journal of how much Brian is drinking and how much he is peeing and call him next Tuesday or Wednesday of next week. We had plans to go to Legoland this weekend to celebrate NO MORE CHEMO and Dr. Kummer said that was still OK. Tonight Brian took his first pill (he has to swallow it) and he did AWESOME!!! He popped it in his mouth and swallowed it right down. Fred had made a deal with Brian about a new Lego set. After Brian swallowed his pill he looked at Fred and said, "let's go to Toys R Us right now Daddy!" And we did.    :)

Wednesday, March 21, 2012


Brian was excited to play on the train this morning at his appointment. It's in the waiting area and B has always liked these trains. He doesn't have one int he Oncology waiting area.

Brian's endocrinologist said that his urine and blood from the March 8th labs looked suspicious. You can imagine the frustration given these were the same labs that Dr. Brown looked at and said Brian looked normal.

Dr. Kummer had his nurse take a urine sample from Brian then said don't give Brian anything to eat or drink for the next six hours and then we would get another urine and blood sample. He allowed us to leave and come back for the second urine and blood sample.

Our down the street neighbor and friends from CC had the other three kids so I went to her house to pick them up and ask if I could bring them back later in the afternoon. As soon as we got to her house Brian noticed the six water bottles on the table in the backyard where everyone was playing. He immediately got grumpy and started getting violent. He likes to hit and shove. So, mommy said "Let's jet kiddos...thanks for watching the three...we'll see you this afternoon."  :-)

Knowing that Brian has access to water without me noticing at home we intentionally did not go home but stayed out the entire time. We went to Target to look at toys, we went to Toys R Us and got new mini figs (which Brian did not care about and didn't want to open his), then we went to the mall to look for Brian a pair of tennis shoes. He had decided a few weeks ago he wants light up Sketchers. (today we didn't get any b/c he did not care) Then we went to the hospital for Brian's labs. After that we went to Chick Fil A for lunch and dropped the other kids back off at our friend's house.  
Here's Brian before his blood work and urine at 1:30 PM going on six hours without food or water.

At Brian's follow up appointment that afternoon we were told that Brian's labs looked like he had something to drink because his urine was even more diluted. I was firm that he did not drink anything, he didn't even have the opportunity. Dr. Kummer said he believed me and that Brian's osmolality and sodium look suspicious. He wants to do a 12 hour deprivation test. So tonight Brian will go to bed and not be allowed anything to eat or drink after 2 AM. We will head to Oncology to get his port accessed at 8 then head over to the Endocrinology area to stay in clinic for the day.

While waiting this afternoon for our follow up appointment with Dr. Kummer Brian got to see Lucy the dog. Lucy comes around to cheer up the kids at the clinic. Brian liked her because when he said "sit", she sat. Our dog does not do that.  :-)

Tuesday, March 20, 2012

No Words...

Today has been stressful. We are still going to school every Tuesday for our Classical Conversations home school group. The kids love it. Since I am Brian and William's tutor I am always with Brian. When we are at home he is comfortable and can help himself to some water and the bathroom. While I can tell it is more than normal, today at school I got the full picture because Brian had to ask to go potty or get something to drink. He asked to go potty every thirty minutes. Every time he would come back with his shirt saturated with water from the water fountain. At lunch he was begging me for a water bottle. A little girl in our class left her unopened water in the classroom when she went home before lunch. Brian was eyeing that thing and kept asking if he could have it saying she wouldn't mind. When I finally said yes, "just drink it" he drank the entire thing in two gulps. I'm talking 16.9 ounces in just a matter of seconds. This was after a day of drinking large amounts of water and peeing every thirty minutes. Surely he couldn't be thirsty...
    Well, we were out of toilet paper and pull ups so I had to go to Target before getting the girls to ballet and William to guitar. (Side note: Brian has been wearing pull ups at night since he started treatment. During the summer of 2010 Brian didn't need pull ups. He was off treatment and this was before his re occurrence/chemo round two in the fall of 2010. So, when he started chemo again and started needing pull ups again we assumed it was a side effect of one of his medicines or just a sign of all his little body was going through. We didn't think much of it. It was sad when he noticed his then two and half year old sister wasn't wearing pull ups , but he was. But, we always explained he couldn't help it.) Anyway, I needed pull ups because Brian had been excessively wetting the bed every night the last week or so. He would pee through a pull up and PJ's and saturate his bed. He would wet two to three Good Nights pants every night. It was getting tiring. But if he was wetting so much through a pull up I wasn't going to go with out one. So, back to the quick Target trip, Brian peed when we left the house and started crying that he had to pee when we got into Target (a four minute trip from our house). I wasn't sure what he was going to pee because he had just gone a bunch at home, but he peed ALOT. When continued a speed trip through Target b/c we didn't want to be late for ballet and guitar. We grabbed our T.P. and pull ups and headed to the check out. On our way to the van Brian started fussing about peeing again. Since I didn't want to drag everyone back into Target with our already purchased products I told him to hold it until we got to ballet. He started crying that he couldn't. Let me just say that Fred and I have been pretty structured with our kids from the beginning. I know their cries and voice so I can tell when they are serious. He was hurting and needing to pee. Since we were parked pretty far out I let him pee in a bush by the van. I stood there guarding him to give him some privacy and mainly to make sure no one could see what we were doing. I was shocked he peed so much and just like the rest of the day it looked like water. He peed for a very long time. It was like he hadn't peed in hours and hours, but it had only been minutes. In the previous thirty minutes he went to the bathroom like it was an emergency three times. Each time he went it was excessive and looked like water.
    I got in the car and called Nemours and told them he is not OK. His behavior is not normal and he is unable to quench his thirst. During the past couple of weeks Fred and I had caught Brian shutting himself in the bathroom to drink from the sink or bath tub when he was being restricted. When we didn't restrict him to see how much he would drink it was non stop. As I am giving the nurse all this information she told me that she wasn't sure where the miscommunication came in and that Brian's blood work was taken. And according to Dr. Brown everything looked normal. Dr. Brown said if we had concerns we should call our pediatrician. I cannot even begin to express the shock that I experienced when I heard that. Brian has not seen our pediatrician in two years. Everything and I mean everything goes through the oncologist. I was so shocked that I called Fred, still absolutely stunned. When he asked me what I said to the nurse, I told him that I had asked if I heard her correctly. Then I didn't say anything because I didn't know how to respond. Take to mind that this is the same nurse that told me that Brian's blood work was not run for the tests needed to check for D.I. How she all of the sudden acted like she didn't remember that and I was the one uninformed and had some misinformation blew me away.
     I will not go into the details of our frustrations and with whom, but let's just say Fred took care of it. When I told him we were instructed to see our pediatrician and I didn't say much to the nurse he replied, "give ME the number." Long story short, Fred, on his own (read: no help from Hem/Onc) got us an appointment with the Endocrinologist tomorrow morning at 9:15 AM.

Friday, March 16, 2012

At the Beach and update

On Wednesday we drove over to Port Saint Joe/ Mexico Beach Area and spent Wednesday, Thursday, Friday with three other families. On Thursday Aunt Jess, Uncle Matt and baby Caleb came over to go to the beach with us for a couple of hours. This entire trip was tons of fun, but stressful for Mommy too. Our typically two hour drive to Panama City was WAY longer because we had to stop every half hour to forty five minutes for Brian to go potty.
    We have been dealing with Brian's symptoms of Diabetes Insipidus for a few weeks and had a urine sample and blood work sent off last Thursday the 8th. I called Nemours to find out the results (b/c no one called us) and was told that the urine was normal and the blood work was not tested and I should bring him back in to get the blood drawn and retested. I assumed that since the urine was normal I wouldn't put Brian through anymore unnecessary poking and blood draws. I told the nurse if I was still worried in a couple of days I would call back, but that I was not going to bring him in. We were going to work on limiting Brian's fluid intake and see if maybe he has just gotten in the habit of drinking excessively. (What we were told last time we went through these symptoms in Dec. 2010) The nurse told me that she would check with Dr. Parmley (the doctor we are to see on March 29) and see if that was OK. If I didn't hear from her than it was OK to not redo the lost blood work and wait until Brian's next appointment on March 29th.
    I never heard from her. Assuming all was well with Brian and we needed to limit his fluid intake we continued life as normal just restricting Brian ALL DAY LONG. The requesting and begging for drinks did not stop. My friends even saw Brian lick the valve on a drink dispenser. We had a couple of gallons of pink lemonade or punch made at all times for the kids and the dispenser sat on the counter in the beach house. While we were hustling around getting kids taken care of Brian was sneaking over and licking the valve hoping to get a drop of drink since Mommy kept telling him one drink was enough.
   His frequent need to potty was a source of embarrassment too. He pulled his swim suit down and peed on the concrete next to the hot tub and pool. Not in a bush, or around a corner, but right there in the middle of the action. He peed at the beach two or three times. He was non stop.

We still had tons of fun and enjoyed the fellowship with our friends.

William and Brian had fun at the beach.

Brian's constant thirst didn't take away his silliness. He tried to jump in the picture with baby Caleb.

Florida is beautiful and we will treasure the memories from this time. It was humbling to Mommy to have her friends see the behind the scenes Schreiber's. Brian screamed and cried before bed wanting to go home and wanting Daddy (who wasn't with us for one night). When Brian gets in these moods and we are home I would send him to his bed, but since we were at a condo with friends I just had to hold him and rock him. Of course that made him mad and he was squirming and fussing. I looked like that mom that couldn't handle her own children, but I knew if I let him down he would hit someone or just go cause trouble. Ahh....

anyway, this picture is beautiful. It was a good time despite the growing suspicion that Brian is NOT ok.

Friday, March 9, 2012

Krispy Kreme and Evidence

While Brian had his last chemo yesterday and we celebrated last night, we are still "in it". Fred and I have tried to celebrate that we are finished with the protocol Brian currently doing, but Brian is still not OK. He has some suspicious behavior. Of course Brian is on steroids right now so that will add to his grumpiness and mood changes, but even more than typical steroid behavior Brian is showing signs of diabetes insipidus. He will not eat and only wants to drink ice water all day long. He will cry and moan and carry on, begging for something to drink. He has not been eating much at all. We have to bribe him to get some food in him. 
Thinking that I could get him to eat some Krispy Kreme, I took the kids there for breakfast this morning. We took our time watching the doughnuts being made and then sat and ate our doughnuts in the restaurant.  

I think you get the picture. Brian would NOT eat his doughnut and never did. He's never been much of a sweets person, but usually he will at least some of his doughnut. He was so wiped out from not eating and throwing fits that Brian put himself down for a nap today.

Here he is sleeping with Pepper the dog, his gift for NO MORE CHEMO. Brian picked that out himself.

Thursday, March 8, 2012

No More Chemo Party

Our sweet friends from church, the Beach family, hosted a party to celebrate NO MORE CHEMO on the night of Brian's last chemotherapy appointment. They invited our church and some close friends to come over and celebrate with pizza, salad, fruit and desserts. Everywhere you turned there were smiley faces and BRIAN confetti. It was very special and Brian loved every bit of it!

THANK YOU BEACH FAMILY, Cirlce PCA and "our" Smith family for celebrating with us.

Wednesday, March 7, 2012

bloodwork for last chemo

Today Brian had bloodwork for his last chemo treatment that is scheduled for tomorrow. Since we are such frequent patients Miss Nikki and Miss Teresa got to know and love Brian. Here he is with pictures of the Lab ladies on the second floor Lab Express at Sacred.

 Brian and Miss Nikki. She is the one that actually drew Brian's blood. I would put lidocaine on his arm before we left home so when she drew the blood it would not hurt. Miss Nikki took blood from Brian's arm each visit.
Miss Teresa was the receptionist, intake lady. She pulled the orders out of her "standing orders" file and got us back to Miss Nikki as quickly as she could. On occasion she would have to assist me in holding Brian still.