At it again

Yesterday we started another week of chemo. Today is the big "day two" that always leaves Brian with a fever. We went for chemo as typical, taking the entire family knowing it was an in and out sort of thing. The kids were cute and enjoyed peeking out the window of the playroom from our fifth floor view.

I didn't dress them alike today and not one person stared... I wonder if my theory is correct?  :-)

  We got home around 11 and ate some lunch. Brian did not want to eat. I took his temperature and he was running a fever of 100.7. I gave him some more Zofran and cranked the AC down to 70 in our back room and put Brian on the couch in the cold room. (We have a separate split system AC in the back of our house in an addition that was added on almost twenty years after the house was built. That room can get cold!) In the cold room his fever went down to 100.5. By this time it was around 1:00 ish and Brian had been running a fever for over an hour. We called the doctor hoping that we could go to the clinic and get antibiotics and cultures taken during regular hours and avoid the ER. By two they called back and said come on in. Fred took Brian to the clinic and the other three went with me to get some groceries because we were out of everything.
  We all got home within a half hour of each other and our dear friends the Knutsons brought us dinner. We are so thankful! Laura, the peach cobbler was so fantastic I think Fred and I can finish it off by tomorrow morning.   :-)
     While Fred and I are enjoying the cobbler, Brian isn't feeling so hot. He didn't eat tonight and fell asleep in the chair while I was dishing up the kids plates. He slept through dinner and is still running a fever of 101-102.

Tomorrow morning we go back for chemo day three. Please continue to pray for Brian as this is a hard week on him emotionally and physically.
 

Our 100th Post

This is the 100th post for the blog. For the occasion, I thought I would share some cute pictures from the other celebration we had today.

Cousin Caleb will turn one on Monday and today we drove over to Panama City for his birthday party. It was a good day.

Funny story, yesterday when we were at the hospital getting Brian's blood work done, we had three different people point and stare at us. I couldn't figure out why we were such a sight. I mean, four kids is not that many...

   I finally put it all together when I looked at a picture I took of the kids yesterday. You can see what I mean in the picture below too. I think because I dress the boys alike and the girls alike OR dress them all coordinating (because I think it's cute) in combination with them being so close in age, that people are staring to see if they are multiples.

So, here are our cute kids that get stares almost everywhere we go.

Everyone (except Liv) is holding up one finger for Caleb turning ONE.

Schreiber kids with the birthday boy.

And all nine grandchildren for Bigdaddy and Grandma Hayes. From ages 1 to 10! (And I still have two other siblings that haven't had children yet.)

William, Brian, Joseph, Natalie, Noah, Ansley, Caleb, Claire and Olivia

My older brother Jonathan and I kept our families nice and even. We each have two boys and two girls. So, Jess and Matt, now that Caleb is one it's time to have triplets...one boy and two girls!!

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.
 

Enjoying some down time...

We have enjoyed the down time this week. Brian did have his MRI on Tuesday and we still have to go back to the hospital for a skeletal survey sometime this coming week, but the week has been so calm. It has been nice. Brian ran a low grade fever last night. We were thankful that it didn't go over the 100.5 mark so we didn't have to call in. He stayed at 99.9 and 100.1. He wasn't too interested in eating either. He's been filling up on water then doesn't want food. I think we are going to have to increase his DDAVP meds for his Diabetes Insipidus.

  Last night Fred and the boys built a lego set together.

Tonight the boys and I pulled out all the instruction booklets to their Duplo Lego sets and put them together. Even Ansley joined in. We love Legos. Right now Duplos are my favorite because I cannot stand stepping on small lego pieces that inevitably end up on the floor.  :-)

Thank you for praying for our family.

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.  :-)

From Yesterday

I have a couple of pictures of Brian from yesterday's chemo appointment. I would have posted them yesterday but we didn't have electricity. There were some severe lightening storms yesterday morning and of course, as always, our pole took a direct hit. We were without power for 26 hours. We got restored today and thankfully nothing was lost in this storm. (Remember we lost a TV a month ago). Anyway, here are some pictures of all four kids in awe as the G.P. man replaced our transformer.

   Today, Fred and I celebrate 11 years of marriage and we bought ourselves a new TV. Very romantic, I know, but we realized it was kinda a necessity for our family. As horrible as I am sure that sounds to a lot of people, I am not ashamed to admit we use our TV alot. It has helped Brian get through many, many dumpy feeling days. The TV from '99 that we pulled out and put in place of the one we lost was just not cutting it. I guess because everything is HD TV now it didn't meet standards or something. It would drive me crazy to watch something that we had seen before and know that three people should be in the scene, but our TV showed one person in the center and half of the bodies of the other two people on either side of the center person. Is that confusing? Anyway, our old TV didn't show the entire picture and it drove me crazy.

Fred and I laughed because the TV we lost in the storm a month ago was so heavy it was overwhelming for the two of us to carry out together. Our new TV probably weighs as much as our old remote control!!  :-)

Well, here is the brave boy getting a saline flush. He gets a little flush, the nurse checks for blood return, then pushes the rest of the saline through. Brian can taste the saline and he hates it!

To try and distract him from the taste the nurse let him push the rest of the saline through. He liked that. :-)

Please keep praying for Brian as he has the next three weeks to "recover". This medicine kinda works like a time release capsule and he will continue to have lower and lower counts as the next three weeks unfold. We appreciate the love and support from all of our loved ones. THANK YOU!!!

PRAISE

We all went to Brian's chemo appointment this morning and we were THRILLED to have not heard from anyone regarding the blood cultures taken on Tuesday.

Fred asked our nurse if there were results or any updated information. So far, at almost 48 hours out there is still NO bacteria growing from the cultures.

While this is awesome news, it is also kinda sad to know that Brian's previous hospitalizations were probably unnecessary. Plus, we know that this is his reaction to the meds. Every day two of treatment he gets pretty sick. As we move forward we will have to work with the doctor to prevent unnecessary hospital stays, but still wanting to not ignore fevers just in case of infection. It's going to be a tough act to coordinate.  

Thank you for your prayers and please continue to pray for Brian Robert.

All the kids with their electronics to get us through the appointment.

A tired boy tuckered out from the week.

Brian's new calendars. I remade the July calendar because everything was off from Brian's week of low counts that prevented him from getting treatment last week. Everyone enjoyed checking out the new calendars.

Everyone checking out the new calendars.

Brian excited to see his birthday on there.

Update- July 4, 2012

Well, we made it through the night!! For those of you not on the e-mail lists here is the quick run down.

Monday- Brian's first day of chemo (fourth week of new treatment schedule...remember, one week of chemo, five days in a row, followed by three weeks to "recover"). Brian got accessed and cried saying he was scared. It was sad. He received Vincristine and Cytarabine. Aunt Dabney came over to hang out with the other three kids and treated them to some Chick Fil A and Great American Cookie Company cookies. Aunt Dabney also taught Ansley a couple of lessons along the way during the day.   :-) It was a good day. Brian handled chemo quite well.

Tuesday-  Brian started the day off OK, running around with William and playing Star Wars. By 9:00 AM he didn't feel well and was slowing it down. Daddy carried Brian into Nemours and B didn't even want to bring the ipad. He was really not feeling well. The nurse started Brian's treatment around 11:20 ish. Brian wore a mask so he didn't have to smell the alcohol they clean with. He cannot stand that smell.

Brian's cytarabine treatment for day two of treatment is only a fifteen minute infusion. He was feeling so poorly that he fell asleep.

   By the end of the infusion he was burning up. The nurse took his temperature and it was 100.4. We are instructed to call the on-call oncologist if Brian's fever is 100.5. Since it was so close and Brian was obviously not feeling well, the Infusion Center nurse (Ashley) went ahead and called Dr. Schwartz to let him know what was going on with Brian. We really appreciated her doing that because with the holiday the following day (today) we would be certain to end up in the ER since the clinic is closed.
  Dr. Schwartz came and saw Brian and talked with us. He ordered a round of Rocephin and blood cultures to be taken. (What we have typically done in the ER the previous two weeks of treatment before being admitted.) He let us know that we are allowed to give Brian one dose of Tylenol to see if that helps lower Brian's fever later in the day. If the fever is a result of an infection in his port, the fever will persist and the one dose of Tylenol will not do too much for the fever in the long run. Because the previous two chemo weeks have ended up with Brian being admitted to the hospital for a week, followed by a week of antibiotics at home, we were really trying to avoid that. (That is two weeks in a row that Brian has his port accessed, with a two week break before he starts again!)
    We have discussed with our doctor the possibility that the fever and throwing up, etc are just the side effects of the chemo and not an indication of an infection in his port. The previous two "infections" have been common contaminates and only the first culture taken in the ER ever grow bacteria. All cultures taken after that point are clean and clear. It is entirely possible that Brian didn't have infections in his port. The timeline for how things unfold for Brian on day two of chemo are almost exact each time. So, after his antibiotic treatment at the Infusion Center and blood cultures were taken, Brian got to go home. We were told that as long as Brian didn't have a continuous high fever, chills or obvious changes, don't worry about taking him to the ER that night because we had basically done what they were going to do anyway. If Brian has an infection in his port the cultures will show something and we will hear from them today. At which point he will be admitted to the hospital. So, basically we are waiting to hear from the today. Actually, we are waiting to NOT hear from them today.
    Brian did OK, through the night. He had a fever that hung around 101.3-101.8 most of the night until about 2 AM when it went down to 99.9. Fred and I kept talking back and forth about the ER if the fever didn't go away. We were SO thankful that by 2 it was down. Plus, Brian did not throw up. We gave Brian his Zofran a little earlier than his dose is "suppose" to be given (but still inside an allowable time frame) and I think that proactive move helped his nausea.
   Please pray that we do NOT hear from the lab about Brian's blood cultures. We are praying that he does not have an infection in his port. On the other hand, if he doesn't have an infection in his port it is really sad to know that this is our boys reaction to the medicine. He will go through this each time. That is really sad and makes the ten more months he has of this look really long.

Update 7-1-12

The boys were sitting around the coffee table in our playroom/school room tonight drawing and doodling. Brian then asked me to spell something because he wanted to make a sign.

He wrote NO on his own and asked me to spell CHEMO. Super sad. He has a lot going through his mind right now as he will have chemo tomorrow. We found out on Friday (two days ago) that Brian's counts are at 1100, so he can receive treatment this week. Please keep praying for sweet Brian Robert. This is what is on his heart tonight...