Update on Brian

Brian had chemo two weeks ago. Here are some pictures from his last visit. He's quite a trooper but he still HATES having his port accessed.

 Here is the tray of meds. I especially hate seeing the warnings on the Vinblastine that it is fatal if given intra something or another (given in the spine). Yes, I asked "WHAT DOES THAT MEAN?!!!" Fred reminded me later that we had already had this discussion as I had noticed that before and asked about it. I have absolutely no recollection of that. It's amazing what you block out and don't want to remember.There are a lot of chemo visits that we don't dwell on, we just get through them.

We were in the spider man room. This would be our original room. The one that Dr. Chatch and nurse Jennifer handed us our big "your child has cancer" binder and told us we were going to be admitted to the hospital to have a port put in and then start chemo...right then. I still think of that day every time we are in this room.

   Brian had a skeletal survey today to see if he has any new lesions on his bones and to peek at the one we found on his leg a few months ago. Please pray that there are no surprises and that everything is clear. We will find out the results of these scans next week at Brian's chemo appointment.
       Please be in prayer for Brian's next few chemo appointments as they might be our last. He finishes up the protocol in three more treatments. Then we enter the "watch" time for one year. He will of course have scans and blood work during this time but no chemo. He will also have to have his port flushed every month and he will hate that. But, NO CHEMO!! If he doesn't have a recurrence of systems then he is considered in remission and probably "cured" of his LCH. If he does have a recurrence of symptoms then we start over again with more chemo and a different combination of drugs. We are of course thrilled of the idea of no more chemo, but it is also a little bit stressful to be done with treatment. Brian completed his first round of chemo in April of 2010 and had a recurrence of symptoms within a few months. It was quite a blow to start over. We will not be removing Brian's port this time. We will wait and see how things go before making that decision. Anyway, with almost two and half years of chemo behind us, Brian knows the drill. He thrives on routine and having things exactly the same. We got a letter in the mail today stating that things are changing and Nemours will no longer be giving chemo on the Hem/Onc floor. We will first have our appointment with the physician and then have to go to an infusion center. This adds one more step in the process. It adds one more place to go, more medical staff to get used to and the appointments are then much longer. In our two years we've gone from everything being done in a couple of hours in one room, to having to go to a lab the day before for blood work, then our appointment and now add  an infusion center for chemo. It seems if the focus was really on the children that it shouldn't be this complicated. I will not say anymore about all that because, oh my, I could go off. I don't believe this new procedure is "for the children".
   We really appreciate your prayers and know that they are effective. God protected Brian on our trip to New Mexico during Christmas. It was truly an answer to many, many prayers. The day before we left we thought about canceling the entire trip because Brian had a low grade fever. We took him in to see the doctor and she said, "When his fever hits 100.5 take him to the ER and tell them your son has cancer and you need cultures taken from his port and a round of antibiotics.Then call us." Brian's fever stayed at 99.9 and 100.2 the entire trip, but we never needed an ER visit. Fred and I are extremely grateful for all of you faithful prayer warriors that lift our family and specifically Brian up in prayer. Thank you!!

some recent pictures

Even before Brian got the throw ups today he has started to show some signs of the chemo slowing him down. Nowadays it is not uncommon for him to just go plop himself down somewhere and fall asleep. Sometimes he will even say he just wants to go get in his bed. Here is a picture of Brian asleep on our church pew. (It's at our house not a church. It's from Carrie's church that her Daddy was the pastor of . Carrie grew up at the church and married Fred in that church. Carrie's uncle Rod cut the pew down to size. It's special. Brian has claimed it as a special spot too.)    

One of Brian's things he has become pretty obsessed with since chemo round one is being in small spaces. I don't know if it a control issue or what. It is kinda like he prefers to be in a small kingdom where he feels safe and in charge. He HATES when the other kids mess up his "cage" or "dog house". Those are just some of the names he calls his tight spaces. Here is a series of pictures of Brian from the other day. He made himself a cage and happily sat and watched Wall E while eating a bagel. Brian is mildly obsessed with Wall E right now too. He watches the movie at least once a day. He has told us that we are going to name our next baby Eve or Eva after the Wall E movie. We went a head and told him that we would definitely name our next baby Eva Wall E.  

 
Not too far into his movie Brian hopped on the couch and fell asleep. It doesn't take much to tire him out.

William and Brian are best buddies. They are almost 14 months apart. They miss each other when they are apart and are excited to be reunited. They share a room and typically chat/play/bond for about 35 minutes to an hour every night before bed. We had to start putting them in bed a little early because we didn't want them to miss out on this time. It is truly sweet brotherly love. When Brian got sick last year we moved the baby monitor into the boy's room. It was soooo much fun to sit and listen to their conversations and encouragement to each other. That made us want to give the boys their bonding time. Of course they are not perfect and there are some nights we have to go in and say "No talking. Go to bed!" We can typically tell when the night is going to go down hill. I digress. Recently Brian has started falling asleep as soon as he gets in bed. Plus he has been a bit moody lately. William takes this personally and gets frustrated at Brian for being so mean to him. While we do correct Brian when he is out of line and don't allow him to be mean, William has been convinced that Brian doesn't like him. Plus he thinks Brian is getting some special time with Mommy and Daddy then a trip to Toys R Us for a new toy each week. To resolve any uncertainty William may have had we took him with us to Brian's appointment on Friday. It all became clear that Brian was not having fun with Mommy and Daddy and didn't get a new toy each week. In fact William has been so compassionate and understanding of what Brian has to go through. When we got home from the appointment William gave Brian his medal for being such a brave boy. Mission accomplished. I think Miss Ansley will go next week! In all seriousness it was good for Brian too. He really liked having William there supporting him and offering encouragement.
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BB's hair

People keep asking how Brian responds to the chemo. While it is different for everyone and they can't predict who will lose their hair and who will not, here is what Brian experienced last go around. He is taking a more aggressive approach this time.

Brian's double crown is too cute. Mommy took this picture in September 2009. Brian's before picture.

This picture was taken in February 2010. This is Brian's during picture. There were no hair cuts or trims. This is his hair left alone while on chemo. It is thin and fried with some bald spots.  

When Brian's hair was wet you could really see his bald spots.

Brian's hair October 2010. Before chemo. I love this hot mess! He really needs a hair cut but knowing it is probably about to fall out makes me not want to cut it. I LOVE Brian's double crown.

The above two pictures of Brian's hair right now are what our boys call "popped up" hair. Both William and Brian have a double crown. When they get some length to their hair it gets a little crazy. If it is cut too short it stands straight up all the time. I love their swirls on the top of their heads!!