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!!