Tuesday, November 27, 2012

Update 11/27/12

Thanks to all of you that keep checking on the blog for updates on Brian. We appreciate your thoughtfulness, prayers, concern and love for us.
   We have enjoyed the last three weeks of a break and even traveled over to Panama City for Thanksgiving. It was a wonderful time and the first time we had all  been together in a year. We even managed a family photo of all twenty of us.

Yesterday we went in an hour before Brian's appointment to do his blood work. While his counts were up to 750, and he is able to receive chemo, they are a little concerned that his counts have remained very low the last three months. Some blood was taken before he received chemo yesterday and we are guessing we will hear soon if he will need another IVIG. He has had three of them in the last three years of chemo. Actually, he managed to do just fine the first go around of chemo, it's the second round that he started having things happened that required more treatment or IVIG's. So, he has had three IVIG's in the last two years.
   Yesterday was really hard. I think Brian really enjoyed playing with his cousins and shooting guns with his daddy, uncles and cousin. He longs for the day when he has "no more chemo". (As he says in his prayers all the time)  In addition to transitioning back into chemo week, they sprung a surprise on us and gave Brian a flu shot. While that may not sound like a big deal to most of you, it was MAJOR for Brian. He is constantly asking for reassurance and making sure he knows what to expect. It is very difficult when he gets hit with something outside of what he was expecting. We can tell it has had its consequences because Brian will somberly come near us and lay his head down on one of our shoulders and ask, "What is tomorrow? What is the next day? What is the day after that? And then, what's the day after that?"

    Today is the sick day. Day two. Always. Right now, Brian is in bed with Fred watching a movie. He hasn't eaten and doesn't want to. Because he doesn't eat or drink anything we don't give him his DDAVP pills for his Diabetes Insipidus until he starts to urinate and drink again. The whole day is just off and Brian feels so ill. We hate it for him.
   Just to sprinkle some more stress in our life, our van is messed up again. Fortunately it's the same problem so it shouldn't cost us anything to repair. However, we don't want to have to keep repairing a van every couple of months. When we do have to take it in for repairs we are out of transportation. Given our situation with Brian we don't really like the idea of not having some wheels in an emergency situation. So, something to pray about.
      I would type more and I have some great pictures but for some reason Blogger is giving me fits. I might scream if I sit here longer and fool with more. :-) I will try again tomorrow. Thanks so much for praying for our sweet Brian Robert and all our kiddos.

Friday, November 2, 2012

Update Nov. 2 2012

Thank you to everyone that prayed for us this week. It was a rough one!!! Not only was it a chemo week, but Brian had his MRI on Wednesday. They always do that with sedation, so it's kind of a big deal. We also had some home problems that included plumbing issues backed up into our shower, bathtub, and bathroom floors and some termites. It got ugly. We ended up calling roto rooter and using a lot of bleach. :-) That, of course, happened on Tuesday, Brian's day two of treatment. Ya know, the dreaded day that Brian always gets sick. Ahh...glad the week is over. (well, the termite drama started two weeks before.)
Here's Brian's next couple of months of chemo calendars. I didn't circle the week in December b/c he is technically suppose to receive chemo the week of Christmas. Brian will not, but we aren't sure if it will be the week before or the week after.

Here are some pictures from the week. Friday (10/26) we did bloodwork. The Saturday before chemo we carved our pumpkins as a family. It's always a big deal in our house because Fred is kinda the world's best pumpkin carver. The kids always get excited to choose what Daddy will carve into their pumpkin. I believe Brian was attempting to pick the most complicated thing he could. He finally settled on Darth Vadar and he was happy with it.

Here is a picture of the pumpkins in the dark. Super cool!

Monday we went to school, then headed to Nemours for Brian's doctor appointment and chemo. I know I had mentioned that Brian wasn't going to participate in CC this year, but about week 6 or 7 he decided that he did want to be in a class. Fortunately there was room for Brian to join Olivia's class.

Sweet Brian doing his presentation on the Lego Company. Oh, how he LOVES Legos!

    Monday we found out that Brian's counts from Friday were at 620. The doctor wanted to redo labs to see where Brian's counts were. They were at 650 so we went ahead with chemo. The kids were tired after our morning at school so we all just watched a TV show while Brian got his chemo. Olivia always has a smile! We ended up being there for over three hours because of the extra lab work and the pharmacy was behind or not informed we were there. Not sure what was going on.
Tuesday was HORRIBLE. In the midst of all the mess, a sweet family from our CC group came over and delivered a surprise for the kids. We didn't believe we were going to get to do anything for Halloween. So, the Duncan family brought over enough candy for the entire neighborhood!! It was so thoughtful and generous and sweet. Very creative too. I totally teared up b/c I was on the edge emotionally. They delivered the surprise as the Roto Rooter man was doing his thing. When he knocked on the door to tell me what was up and to collect payment, I totally said goodbye to the Duncan's without realizing I was basically throwing them out of the house. When it dawned on me (after they left) I was so upset and embarrassed. Tuesday was not a good day.

Wednesday was an early morning as Brian was scheduled for his MRI at 7:00 AM. Fred dropped the other three off at a friends house while Brian and I headed to the hospital. I had to call Fred for back up because the lady checking me in at MRI was giving me some problems. They had the wrong doctor listed as the ordering physician and I wanted them to correct it. I am talking totally wrong. Not a different doctor in the practice, but a combination of Brian's name and Brian's doctors name. I told her that there must have been a mistake and would she please correct it. She wouldn't. So, I scratched out the name and wrote the correct one in. The lady was frustrated with me. She took my papers away and printed off another copy with the incorrect name still on it. I told her that I wouldn't sign it until she corrected it. She was firm that it was right and I was mistaken. She was sure that I just didn't know all the pediatric hem/onc doctors. I firmly reassured her that we have been playing this game for three years and, yes, we do know all the doctors. Brian Schwartz may be a real doctor, but he is not our real doctor and he is not in pediatric hem/onc at Nemours. Fred was frustrated and told me to tell them that it is wrong and we don't care if the name Brian Schwartz is a real doctor or a mistake of Brian's name and his doctors name being combined. But, what we do care about is please correct the error so that our doctor gets the results of the imaging. We dont' want to have to track it down b/c the wrong doctor got sent the results or delay the process of finding out the results ourselves.
Unnecessary drama.  
The anesthesiologist that was taking care of Brian, Dr. Cutrone, is a tall Italian man. He's hard to forget. This is the third MRI he has done with Brian. He remembered us and was very friendly to Brian. Before taking Brian back he sat down next to Brian and drew something on his hand. Then he asked Brian to guess. It was super sweet. I took a great picture of Dr. Cutrone holding Brian's hand and drawing on it, but for some reason my phone didn't save it. I was pretty bummed. Here's Brian's hand.
They gave Brian some versed, then immediately took him back. They didn't really give the Versed a chance to take effect, so Brian remembers and was sad that we were separated. However, you can tell in the picture that he was a little drugged.
 and pushing him on back...
After he woke up we stayed in recovery for thirty minutes. Then we headed over to Nemours for chemo. Brian was still a little out of it. Since it was Halloween they handed out treats. Apparently some of the local elementary schools put together some gift baskets. It was really sweet.
Brian was too out of it to care about his gift basket of candy.
I thought this one was pretty creative.  
Thursday we were the first chemo appointment of the day so we had to wait a couple of hours again. Same problem on Friday. It has been taking several hours to get the chemo upstairs so we end up waiting for two and three hours. We were told on Friday that they are coming up with a new system so that chemo is ready for each patient as they arrive, rather than waiting on three or four patients and making the chemo in bulk. I don't understand any of this as all the kids are on different meds and doses based on their weight, illness, etc. So, I have no clue what is really going on. I just know that Friday was not a good day. We had all four kids with us and we were all zapped. It had been a long, bad week. Brian was really upset. He fought a whole bunch and accidentally kicked his nurse as she was trying to take the port needle out. We are very thankful the week is over and look forward to having three weeks of a break.
  Thank you for your prayers. We know that God using you all to lift us up and encourage us. God reminds us of His presence through each of you loving on us and caring for us. We are tired and so sick of doing this. Three years has really worn on us. Especially Brian. It just tears our parents hearts to see his spirit down and broken when he knows chemo is coming.