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!