Friday, January 27, 2012

The Infusion Center

Brian had chemo yesterday. Nemours and Sacred Heart are streamlining the whole chemo infusion thing and working together to create a "simpler" process. It will be better for the children. It only adds another hour to the day. One more medical place to visit. New staff to get comfortable with. The exact same questions and more vitals to take back to back. I was so tempted to have a smart remark when the nurse in the infusion center asked us medical questions about Brian. For example "has he had ________(fill in the blank-nausea, vomiting, fever, muscle weakness, etc.) since he's been seen last." I was sooo tempted to say, "Nope, not in the last 30 minutes." :-) As you can read I have a terrible attitude about the whole thing. I'm sure there is some medical reason that they are doing this, but I come at if from a Mommy's perspective. Plus what we've heard is that this is being done to create a better partnership between Sacred and Nemours. My child HATES chemo and doctors as it is. Routine and predictability are VERY important for Brian. The entire chemo process is difficult because there is so much that is out of Brian's control. He has to be pinned down, physically restrained to access his port. He takes lots of medicine. He has no control. He is not a part of making decisions that are about him and what he goes through. Now, I am not saying our kids have a say in every decision, because they don't. All kids are "forced" to do things they don't want to do at some level. But I am not talking about going to Great Aunt Jane's house to visit distant family members when the kids would rather go to a best friends birthday party. (We don't have a great aunt Jane, just go with me. I am using it as  an example.) Our sweet boy has absolutely no control of major things in his life. It makes the minor things important to him. If he lines his stuffed animals just so, one of his siblings better not come move them. It's extremely important Brian. He will cry and fall apart over someone rearranging his things. Not in a selfish "you touched my stuff" sort of way, but in a "my world is crashing, please, just leave my stuffed animals alone" sort of way. I have talked about his love of tight spaces before. Fred and I pray with and for Brian everyday. We pray that he understands that while everything is out of our control, our loving Heavenly Father has us in His hands. There is nothing that is out of His sovereign hand and He will (and already has) used Brian's illness for our good. Our prayer is that Brian will know that God is love and He cares for Brian.  

Here's Brian getting his vitals taken in the new infusion center. To be accessed and get his chemo administered he sits in my lap and it takes two to three of us to restrain him.

Thursday, January 19, 2012

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!!

Sunday, January 15, 2012

Update coming soon

Sorry for the long delay. Update coming later this afternoon. Just had to share this cute pic of all four kids.