BB the brave

I am just dumping some pictures from my phone. This one is of Brian getting his blood pressure taken on his arm instead of the leg. He's a brave big boy. Funny story...Back in January we went to the pediatrician because Ansley was sick. They weighed her and checked her height, then we headed to the room. Brian announced, "Wait, you forgot to take her blood pressure!"

It went well

When they started Brian's IVIG the nurse also gave him some Tylenol and Benadryl. After picking at his lunch a bit Brian fell asleep and slept through most of the afternoon. He did awesome. Brian is such a trooper. We got home around dinner time and Brian was totally normal. He even made it to Wed night church. On Thursday night he did wake up throwing up, but we think that was because the meds he was given broke up all the mucas in his head and it went into his stomach causing him to throw up. He has almost rid himself of that nasty cough he's been battling for about five weeks. He's on the mend. :)

and we have begun

We arrived at Nemours at 8:30 AM for Brian to be accessed. Then we waited for a while for a room to be ready at the hospital. We moved over to hospital around 9:45 ish and ended up in a regular peds room because every single oncology bed is full. That's sad. I think our oncology wing has nine rooms. The two times we've been admitted since our journey began there have never been more than a couple of kids. Now, they are full. Fred and I are grateful we are just here for the day. After a couple hours in our room we are just now a little before noon getting started. I remembered this thing being a crazy long procedure but apparently the crazy long part is not the actual administering of the IVIG but the hospital side of getting it set up and then discharging us.
 Right now Brian is playing his Leapster and Daddy is working from his laptop (comfortably from the bed since B is still scared if it.)  We should be done in four hours.

hello

You've got to love technology. I am adding pictures to the blog from my phone. So fun. Brian and Daddy are watching something on Daddy's laptop. good times. 

at hospital

On Monday we got a call from Nemours saying that Brian's immunoglobin levels were low and we had to go back to the hospital for another IVIG. We are at Sacred today for our second IVIG. Brian did excellent back in December and we are praying this one goes just as well. Sorry this is short and not punctuated correctly and contains mispellings. I am on my phone and this is somewhat of a challenge.

Feb Update

little disclaimer...I am sick and have not edited this. I think I ramble...(no surprise)

Brian went to Nemours yesterday for his regular monthly infusion. He is still taking his oral meds daily. Yesterday we were able to see Brian's regular Hemotologist/Oncologist. We discussed our concerns with him about Brian's symptoms and our fear that the oral meds Brian is currently taking are not quite enough to keep symptoms away. We know that Vinblastine and steroids work for Brian so we discussed going back to those meds. Returning to that specific drug and steroid combination could happen a few different ways. We could either do another initial six weeks of weekly infusion and daily steroids followed by the "pulse" of every three weeks of chemo with the following five days of steroids (Exactly like round one of chemo. That was effective at treating the symptoms but didn't quite "kick it". Perhaps a year of treatment verses seven months would work.) Or we could go straight to the pulse. Our other option is to continue with the 6mp (Mercaptopurine) and Methatrexate that we give Brian orally at home with his once a month infusion at the clinic.
   Right now we are waiting one more month to see if Brian's symptoms go away, get worse or remain the same. We (well, really the doctor...) will decided after the March appointment what route we will go. Obviously the most convenient treatment for Brian and our family is to have him go once a month to the clinic. Plus his energy level and behavior is very normal while on the drugs he is currently taking. It makes me sad to think about going back to weekly chemo at the clinic with steroids. Brian becomes a fixture on the couch. He sleeps ALOT and doesn't have energy to do anything. AT ALL. However, both Fred and I have said it before, we want to take care of this now. Brian prays every day to have "no more chemo when I am 5".  We would rather have a year of "the bad" then keep revisiting chemo drug combinations every year because of recurrence. Brian really wants his port out because he knows that no port means no more chemo. Having the first one removed only to have a second one put back in five months later was TOUGH. Brian sobbed. We sobbed. It was really a blow. Now, Fred and I don't want to make the decision to remove the second one until we know that the meds Brian is taking have done their job. While there is no 100% guarantee, we will be more cautious this second go around. Brian would not deal well with having a third port put in. Anyway, I digress. I guess I am just putting all the thoughts that are swirling around in my head out there. We are kinda thinking that we would rather be more aggressive and prayerfully have Brian's port out by five or very soon thereafter. If we stick with the drugs we are using now the port removal is a possibility, but we are hesitant to take it out given Brian's current symptoms. If he moves back to Vinblastine he will not be having his port out as that is how they administer that drug. Anyway...
    Please pray that God would give the doctor wisdom and that we would have a peace about what route to take. Obviously we just want to be DONE with chemo, ports and hospitals.
  Just another peak into some hospital drama. When I took Brian to the ER on Jan 18 Fred was in Atlanta for work. I called him crying saying they were going to admit us because of Brian's fever and he was neutropenic. (As I had been told by the nurse attending to us.) The nurse came back in the room and said, "You are lucky, Mama, your doctor said you could go home and follow up in the morning. I had all your admissions paper work ready." So, yesterday at our appointment the doctor was going over Brian's labs from the ER and said his counts were low, but he wasn't neutropenic. I immediately told him what the nurse said, etc.. Come to find out according to adult patients Brian's counts were neutropenic, but for a child he was OK. You would think that the Pediatric ER nurse would be all over that, but apparently she didn't remember the difference between child/adult numbers. Our Hem/Onc nurse said she was not surprised and gave us the speech to give during any future ER visits. Our nurse also told me what size needle we use to access Brian's port b/c the ER nurse wasn't sure. Before accessing Brian in the ER the nurse asked me what size to get and came in and out of the room about five times looking at her tray and coming back with something new. She ended up using too large of a needle. It left a mark. It kinda looks like a hole in an ear after you've taken an earring out and let it grow back together.  And people wander why we are skiddish about taking Brian away from his doctor. We can't even leave the fifth floor of the same hospital without some sort of drama. He's four. Keeping things predictable and the same makes a huge difference in how he responds to the visit.

Still Here

Hello to all that are still following the blog. Thank you. We are still here but we are very busy. I have learned to let unimportant things slip away and focus on what matters. We have been pouring ourselves into our children. It's tiring to be good parent. :)  The blog has been ignored so I will try to update as best as I can. I will warn you that I will probably ramble. For those of you that don't want the long version: Brian is still taking oral chemo drugs daily and goes to the clinic for an infusion once a month. He had an ER visit almost two weeks ago for a 102 fever. (That of course would be the week Fred had to be in Atlanta for work. Life is stressful. Thank you Julie for being willing to sit with the other three until midnight. We LOVE you! ) We knew he just had the bug all the other kids took their turn getting, but since he has a port any fever over 100.5 has to be reported to the hem/onc doctor. (We are not allowed to give him Tylenol.) The doctor sent us to the ER and Brian had three hours of an antibiotic infusion and a chest X ray. His lab work came back with his counts low so the ER doctor was going to admit us, but THANK THE LORD he called our Oncologist who said we could be released and follow up with him in the morning a few hours later. There's our medical update. :)
Now, life...
    Brian is doing well, we think. Fred and I are a little concerned as we have noticed some of Brian's original symptoms presenting themselves again. We discussed this with the doctor we saw in Jan, and he did some extra blood work to check Brian's lipils or lipids (OK, something, but I'm not sure if that's correct...I will check and get back to you). He said all that was normal. This was our first time seeing this doctor and we most likely will not see him again. Brian is not his patient so he wasn't as attentive as our regular doctor. I don't mean to sound hateful, but we noticed a difference in level of care. We don't meet with Brian's oncologist until Feb. 11. We will discuss our concerns with him then. We are praying that everything will be OK and that we continue with the treatment plan for the full year as it was laid out for us. It does kind of unnerve us that the end of November into December Brian went without treatment for three weeks (because his counts were so low) and he started presenting symptoms again. They have not gone away. This timing coincided with the change of drugs in Brian's treatment plan. Since I am not a doctor I don't want to diagnose but it seems like the new drugs are not as effective as the infusions he was receiving. (Vinblastine) Of course he took Vinblastine for the entire term of treatment last time he was on chemo and he had a recurrence within four months of completing that cycle. The thought this time around was that Brian needed a full year of chemo and not just seven months. We are praying that is so. We are praying this round of chemo gets it.
      I haven't posted about the Wings of Hope Christmas party yet, but I wanted to share something that has stuck with me and Fred since then. We didn't join or participate in WOH last year because we didn't want to be "one of those families" with a seriously ill child. By the second round of chemo we decided, for Brian, it was a good idea to see other little kids (outside of the hospital) that have to go through the things he does. We signed up and we went. I teared up as we moved around the room meeting people, realizing that we belonged there. It was sad. (Ask anyone that knows me well, I rarely cry.) One of the things that Fred and I had validated is that all these people understand the process. They get it. So often people ask us Brian diagnosis and prognosis and when they hear the prognosis is good it's as if they fail to think about the "getting through it". If you haven't had a child on chemo then you don't understand what all is involved. It's understandable that they mind kinda goes to "Well, that's good. They do chemo for a year and he should respond and be OK. What a blessing it's treatable."  While that is true, we are grateful that there are medicines that have successfully treated Histiocytosis, the process sucks. We are seeing the process take a toll on everyone in our family, not just Brian. Some problems we are currently working on include our seven year old being very perceptive that Brian gets more time and special privileges. She doesn't understand why she doesn't get the same. For example, when Brian was getting infusions of chemo weekly and on steroids he didn't do anything. Literally. Nothing. On the actual day of his infusion he would want pizza and popcorn for dinner. There were some weeks that he wouldn't eat his pizza and he would request to just be on the couch with his popcorn. During that time it was work for him to sit at the dinner table for 45 minutes. We didn't make him. After a few weeks of that Ansley started to state, "I want Chick Fil A for dinner. If Brian gets what he wants I get what I want!" Sometimes we would let her sometimes we would not. Other issues we've had was my time. Back in Oct/Nov/Dec. I was consumed with phone calls, paper work, staying on top of insurance, juggling doctors and appointments, etc.. Naptime became my time to get most of that accomplished because there were just two kids in the background as opposed to four. I would typically let Ansley and William watch a movie, go outside, or play with playdough. I tried to give them something that was a treat during this time. That all sounds lovely and well organized but it didn't always work out so nice. There were plenty of days that I ended up on the phone mid morning plopping all four kids in front of the TV as I battle things out with whatever drama was going in the moment. Not to mention that when I did get a naptime to get these things accomplished Ansley and William would inevitably run in and and want to show me their play dough art, point out a bird in the backyard, etc.. They wanted to continue sharing their life with Mommy. They understood and "got it" when I explained that Mommy has to take care of issues with the doctors, insurance, etc., and I think that they would have been OK had that been the exception, but when Mommy's time was taken up almost daily they got frustrated. They associated that as more attention Brian got. "Everything's about Brian."
   Money was another issue that we had to deal with. I think this was good. Our children have been very blessed in that they don't know what it means to do without. I don't mean that we give them everything they want the second they want it or do they have to have everything, but they don't know what it means to not be able to afford something. If they see a toy they want they assume they will get it for their birthday or Christmas (and they probably will). Since money was/is ALWAYS (and I do mean always...we used to play a game of how many bills will we get today...) flying out the window we started talking to our kids more about budgets, planning, saving and being good stewards. Stuff we should have been doing anyways. We would explain to Ansley that just because we technically have the money for something doesn't mean that you should buy it. We also explained that when Mommy said we don't have the money for that right now it didn't mean we have "NO money" (as Ansley would say), but that we were not going to spend the money that we do have in that way. Again, all good stuff that we should have been teaching already. I think I have to get it into my mind that our kids are getting older and are becoming big kids. We are no longer in the toddler/preschool phase. Our youngest Olivia turns 3 today! By that age Ansley already had two baby brothers. She could run grab a diaper and tell the babysitter where we kept things in our house. Yes, my babies are big and I can no longer have adult conversations around them because they know what I am saying and Ansley can even spell it. Not realizing this earlier I have made comments to people soliciting money that we don't have any to give because we are paying for chemo. Yeah, poor judgement on my part. All Ansley heard is that we don't have money because of Brian.
   I have learn ALOT these last few months. I've made a ton of mistakes, but God is good. His mercies are new every morning. He is faithful and He will use this challenging time for His glory. Our prayer is that we glorify Him. We hope people see that we aim to glorify Him, NOT because we expect Brian to be miraculously healed and our children grow up to be perfect, but that we glorify Him with whatever we have been given. Right now we have been given chemo with our four year old son. Glorifying God sometimes that means looking at our seven year old and saying I messed up and I am sorry.

At Chemo

On Friday Brian had an infusion and some blood drawn for labs. Now that he has his surgery behind him we can move forward and enjoy Brian's new chemo/clinic routine. We go to the clinic once a month for an infusion and labs. At home Brian is taking two different chemo drugs orally. One he takes daily and one is once a week. Brian was thrilled to find out this past Friday that his next clinic appointment (which means getting his port accessed) is not until Jan. 14th.

 On Saturday (Dec 18) our family went to the Gulf Coast Wings of Hope Christmas party. It was such a good experience for Brian to see his two doctors outside of the clinic and hospital. He was really nervous and excited, but it was really good for him because we have heard lots of chatter from him about Dr. Chatch and Dr. Schwartz since yesterday's party.  I will do another post in the next couple of days all about the party and include some pictures. It was a really good experience for our family. It was nice to meet other families that have had a child go through chemo.

Here is a picture of Mommy and Brian from this past Friday. We were in the play area picking out some books to take back to B's room. His monthly infusion is an hour long. It's kinda sad to watch Brian walk with his blue pump. He knows how to move with out getting his tubing tangled. Definitely one of those things I never thought we would have to do.  

Happy!

I could title this THANK YOU AUNT DABNEY or HAPPY BOY!!! Aunt Dabney won favorite person in the world award in Brian's book. She found this Wall E plate and just couldn't wait until Christmas to give it to him. He was one happy boy!

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 IVIG

This morning Brian went to the clinic to have his port accessed and labs drawn. From there we walked to our floor in the hospital to be admitted. There are not many perks to being a kid on chemo, but at Sacred the oncology patients have a special unit that is a cut above the normal peds floor. Here is the doorway into the Oncology Unit. Notice the hospital floor in the first picture then you will notice in the following pictures the oncology unit is a bit nicer and newer. When we were admitted last year there were only six rooms. They have expanded to nine rooms. Brian remember that he had the red room last time. This time we were in the light green room. It was funded by Publix. Perfect room for us. Only thing that could have been a bit more "schreiber" would have been a Chick Fil A room or a Target room.  :)

Notice the ceiling tiles are painted by kids. They let their patients paint a picture and write their name on it.

Brian was all smiles and peeking out to see what crazy mommy was taking pictures of.

This is the playroom for the nine oncology rooms.

Here are Brian and Mommy sitting in the chair because Brian was SCARED of the bed.

Still in the chair.

Mommy's mission today was to get Brian over his fear of the hospital bed. He saw the Chipmunks movie and there was a scene that was in the hospital. Apparently Dave gets smashed in the bed because the chipmunks stepped on the remote and it made it go up and down and closed, then flat. Brian was convinced that he was going to be shut in the bed. He investigated it for a while then decided it was OK, but he didn't want to be on the bed if he didn't have to.

Brian tolerated the IVIG very well and was able to have it administered as fast as they could pump it in. They upped the dose of the infusion every 30 minutes. If Brian was to get sick or lightheaded, etc they would drop the amount down the the previous dose. Well, Brian never minded the increase and was able to have the infusion in a little over four hours.
   When he gets his port flushed he can taste the saline and he HATES it. He always asks for one of us to plug his nose.

He hates having the "sticker" removed.

We were discharged from the hospital and home by 5:40 PM. Brian took both his oral chemo meds tonight and didn't mind it one bit. They are both strawberry flavored. Because we are getting the chemo drugs made into an oral solution we have to go the Pensacola Apothecary to get them made by special compound pharmacist. Apparently not every pharmacy can do this because they need a special hood to vent the fumes, dust or whatever is expelled during the process of compounding the meds. This is so the pharmacist doesn't accidentally inhale what we are intentionally giving to our four year old. It's crazy how something can be very harmful to one person but helpful to another.
   Thank you for praying for Brian Robert today. The day went very well (for Brian). He's a trooper. His older sister didn't have such a great day. She gave our babysitter quite a bit of trouble. Not to excuse her horrible behavior today, but she is just six. She is not doing very well at handling all that we are going through. I know this is a public blog, but it's also our journal to remember this time. I don't want to paint it as super cheerful and rosy when it isn't. Times are stressful. Just to top it off my dishwasher died last night. Like I said stressful. I can guess what I'm getting for Christmas this year.

 Please continue to pray for our family. We appreciate all the prayers and e-mails of encouragement.We love you all.

Friday

Well, we just heard from our Hem/Onc nurse. Brian will go to the clinic on Friday for his port to be accessed and labs drawn. Then we will be admitted to the hospital. In the hospital Brian will receive an IV-IG. Since it is his first time to have one he will have to be in the hospital and it will take all day. We will be allowed to be discharged when the infusion is complete, but we were told to plan on it being an all day thing. Please pray for Brian as he is already nervous about this. He heard me talking on the phone with his nurse. He came in and crawled up on the church pew beside me  and sadly looked at me and asked, "Do I have to be hooked up to a machine again?"
  Please pray for Brian. He will get this boost just to get kicked back down again as we are suppose to start his oral chemo drugs this Friday. We will probably have to postpone his oral surgery. We will see how Friday and Saturday play out before we make that decision. Thanks for caring about our boy!

Still No News

 We are waiting to hear from the Hem/Onc nurse about Brian's counts. Yesterday morning I took him to the Pediatric Lab to get his blood drawn. After that we headed down to get X-rays that Brian has to do periodically to check for Histio involvement. I'm not a Radiologist but from what I saw it looked good except for the mouth area. :) We knew that anyway. Brian is scheduled to have oral surgery next week, but if his counts don't improve we will have to postpone it. I am just waiting to hear back from the clinic after the doctor has a chance to review yesterday's tests. I will let you all know what's up when we know. Thanks for praying for Brian.
 

Keep Praying

 On Tuesday we had Brian's blood work done to check his counts. The results came back on Wednesday and his counts were even lower than the previous Friday. We took him back this morning and the lab was closed. We ended up going downstairs to the diagnostic center (all of this is at the hospital) and it was a disaster. Poor Brian was poked several times and the lady fished around in his arm with the needle but never got blood. If Brian needs blood work that they don't get from his port we typically put some Lidocaine cream on him so he doesn't feel the prick. When the lady fished in the numb arm it wasn't too bad. When she moved over to the arm that didn't have cream Brian screamed. The lady was getting ready to move down to Brian's hand/wrist to fish around there and Mommy called a halt. Mommy said we were not going to keep "trying" but we would come back on Monday and go to the lab. Thank you very much. Mommy should have immediately protested as soon as she recognized the nurse as the women being trained in the lab on Tuesday. It was this lady's first week at Sacred Heart. Everybody needs time to learn and get comfortable, but little Brian will not be anybody's testing ground. He goes through so much already. Anytime we can minimize some stress and discomfort we do. So, Monday we will go back and see our lady, Miss Jean, at the Pediatric Lab. We will keep you posted.

  

These are old pictures of Brian, but it gives you a peek at some of the places he frequents at Nemours. They try to make it as cheery as possible.

The hematology/oncology clinic has a play area in the back near the infusion rooms. No children except patients have access to this area. It's different than the waiting room.

This picture is just adorable. This is from Brian's birthday in August. Grandma Hayes gave Brian a HUGE Woody doll and the Woody PJ's he is wearing. I included this picture because it shows what our Brian normally looks like. The steroids and chemo have made Brian look huge and swollen. It's sad to look at him now because he just looks like a sick child to us. This is our BB...

Some pictures of Brian

Here are some pictures of Brian at the hospital on Friday. He didn't have chemo on Friday but he had an hour long infusion of the drug Pentamidine. He doesn't understand that he didn't have chemo because they accessed his port. That is the bad part for Brian. He hates getting accessed. When you say chemo Brian thinks getting his port accessed. So whether he gets chemo drugs or not is completely irrelevant to him if his port is accessed. We are switching over to oral chemo drugs but we will still have to go the clinic once a month for Brian to get his port flushed and his Pentamidine infusion.

Brian's favorite part of the infusion. It says COMPLETE!

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.

Pray for Brian

The chemo drug Vinblastine can cause constipation. Well, Brian has suffered with that on and off the last week and a half. His stomach got so bloated that he looked like a starved orphan in a third world country. We've been giving him Miralax and straight apple juice and he was going potty but this morning he was doubled over in pain and sweating. He kept complaining and crying so we took him to the hospital. He got some X rays and an Ultrasound done which revealed that Brian had an insane amount of gas in his abdomen. He is constipated and backed up. Every time he breaths he is taking in more air and it's just not coming out.  I will try to post the X-ray picture. It was kinda cool. Of course it wasn't cool for Brian because he could feel the balloon ball of gas in there! We are still giving him LOTS of Miralax trying to work the stuff out of his system.

The gray area on the right that is kinda shaped like a potatoe is a big ball of gas!

Catching Up

The last month or so of our life has been out of control. There are so many things going on (things not even directly related to Brian's illness) that cause stress and  make life difficult. I will not share all on this blog but the long and short of it is pray for the Schreiber family!

We have called for reinforcements and Fred's mom has been here a week and will be here for three more weeks. It has been so nice to not have to exasperate all our friends to help us or to have to pay for child care. It has been such a wonderful blessing to be able to just go and do something without having to plan childcare. Fred and I have enjoyed being able to do something by ourselves too. Even if it is just go grab Starbucks really quickly. (THANK YOU, Aarin, for the generous gift card!!) I have been able to catch up on doctors appointments for myself that have been put off due to having so many children so close together. In the last week I have been able to get my teeth cleaned, get four of six cavities filled and go to the girl doctor for my yearly. (Apparently you can brush your teeth too hard and brush the enamel right off. I have done that. It's really not cool.) I am feeling some sadness for what Brian is about to go through in the next couple of weeks because as I sit here and type I have a numb tongue and cheek all the way up to my nose. Of course Brian's oral stuff is more involved, but I remember last year when he woke up from having his two year old molars removed he didn't understand why his entire mouth was numb. He kept rubbing his face like he was trying to get something off of it. Well, here we go again. He has to have his one year old molars removed in the next couple of weeks. The bone loss in his mouth makes the gums recede because there is no bone for them to adhere to, thus exposing the entire tooth. When Brian has all four molars removed the doctor will do a biopsy of the tissue in the gums to check for the presence of LCH. Something to praise God for in all of the this is that last year when he had the two year old molars removed we were told that Brian might not get the permanent molars that would grow in after the two year old ones because they bud off of baby teeth. Well, when we had Brian's X rays last week we saw three of the four permanent molars growing under the gums. The fourth one could be there but we didn't see it because it was a bad picture. After Brian gets his one year old  molars removed next week he will have NO molars to chew with until the six year molars come in. It's kinda sad to think about looking into his mouth and eight of his teeth be missing but in the big picture this is so minor. 

  Just to give you a peek into some of the stress involved with things like this let me tell you about one of the most stressful aspects. Dealing with insurance. I spent two hours and a couple of days on the phone getting our oral surgeon authorized as an in network doctor since our insurance doesn't have one in the area. Then we had to get our medical insurance to authorize payment to the oral surgeon's office since this surgery is a result of a medical condition. After getting all that worked out, the oral surgeons office let me know they don't work with Blue Cross Blue Shield and we will be paying for the entire surgery out of our pocket in advance and then file a claim with Blue Cross ourselves. Now, it's just the oral surgeon's office, not the hospital and anesthesia so it will only be a little over $1000. Not too major, but given that we currently deal with Sacred Heart, Nemours, Anesthesia, the hematologist/oncologist, the pediatric dentist, the pediatrician, labs and the offices of whatever specialist we are currently dealing with, we are not in favor of having our money out there to be held and then returned to us four to six weeks later. 

 This is all just for Brian. In the past six weeks Fred has had two procedures for his back. So that has costs $$ too. PLUS, I have had my doctors appointments and mouth fixed up. I also need to have surgery in the next few weeks to repair some damage from when Ansley was born. All this info is just to give you a peek into how stressful the Schreiber house is right now. So, if we haven't called you back or responded to an e-mail hopefully you see it is not about you. :) 

I'll leave you with a picture of William and Brian. This is Brian's permanent spot when he is awake. He and William like to watch the show Dino Dan on Nick Jr. They are probably watching it in this picture. (Don't worry the boys have been told that the world is not millions of years old and dinosaurs are not millions of years old.)

Aunt Carol, notice that both boys have their blankets you made them as newborns. They are still very special blankies that we can't live without.

Life is Crazy!

Well, Brian's compromised immune system means that when he got the throw up virus he held onto it for 11 days. We spent several hours at the hospital a week ago getting Brian some fluids, an antibiotic and a prescription for Zofran to help him out.
Add to that some side effects from the Vinblastine and we've had some really rough weeks. Brian's latest side effect is that he has really weak legs. He is falling alot and then has a hard time pulling himself up.

ok...life calls. more later.

Super Cute

Freddie and Brian outside tonight. They spent some time in the quiet outdoors looking at the moon and stars. Brian fell asleep on Daddy's lap.




My how times have changed. Some time ago this might have been Mommy and Daddy sitting outside talking while Daddy drank a cold beer. Nowadays, Daddy's cup holder is sportin' a Cars Thermos with Gatorade.