Saturday, January 29, 2011

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.