Tuesday, March 29, 2011

The New Plan, part two

Brian is such a little trooper. He certainly has a big helping of God's grace on him. He just handles things so well for a little four year old. That's not to say that he doesn't have his moments of total meltdown, but he is really great about all this. It's a lot for a little guy to handle.
   Last week he received his first infusion of "the new plan" and took five days of steroids. He threw up several times, had diarrhea, spit out his medicine and didn't want to take it. We noticed an increase in his emotional outbursts and a decrease in his energy level.
   Last week at his appointment we also learned that Nemours has a new procedure for chemo. Brian has to get his blood work to check his counts the day before chemo. We were told that they were wasting alot of drugs from kids with low counts (b/c if counts are low they can't receive their meds). In order to prevent wasted chemo meds we now have to get Brian's blood drawn the day before his drugs are to be prepared and administered. Sounds great for not wasting meds, but for a little four year old it means going to the hospital twice a week and getting stuck twice instead of once. It was not fun telling Brian we had to do that today. He cried and announced how scared he was. It took Mommy and two nurses to hold him still to get his blood drawn. We could have used his port but it really was easier to just draw it out of his arm. The entire experience was not pleasant. Here's a picture of Brian waiting to get his blood drawn.

We had CC today so one of our friends took Ansley and William home with them after school and then met us at ballet at 4:00. I only had Olivia with me for B's bloodwork. Olivia still naps and she was especially tired after our morning at school. Instead of trying to carry a tired Olivia and hold a scared boy that needed to be comforted, I used our double stroller that we haven't used out and about in quite some time. Maybe even more than a year. Anyway, pulling the stroller out was super exciting to Olivia and she kept buckling herself in and saying "I'm locked. I'm locked...please let me be free". She was saying it like a princess that needed to be rescued. Brian was not amused and it didn't distract him one bit.
     While we were in the car on the way to the hospital I asked Brian what I could do for him. I told him that I wanted to help him not be so scared and then tried to encourage him that we thought he was doing an awesome job being so brave and enduring what alot of people couldn't handle. He said that I could pray for him and hold him and snuggle him. (SO SWEET!) He then told Olivia she should pray for him too. So as we are leaving the hospital Brian turns to Olivia and gets onto her for her "rescue a locked princess" dramactic play. He says "OLIVIA! I told you to pray for me and you didn't!!!" She ever so sweetly responds with, "I did, in the car. Thank you God that Brian doesn't have chemo when he is five."
  We surely pray everyday that when Brian finishes this round of chemo when he is five and a half that he will be done for life with NO long term side effects.

On a happy note, Brian loved his happy meal toy from today's lunch.
Every little boy loves a super hero. Here is Brian and Robin. Thank you McDonalds for 20 minutes of smiles.

Monday, March 21, 2011

The New Plan

We heard from our Hem/Onc doctor and have a new course of treatment. Starting this Wednesday (3/23/11) we will go back to the drug Vinblastine with a steroid combination. We are switching back to the original steroid that Brian took during his first round of chemo. (Sept 2009-April 2010) The steroid that he took from Sept 2010- Dec. 2010 has too many long term side effects that we are not interested in. Apparently it was a stronger steroid. The doctor told us that he was switchingback to Prednisone because he didn't want Brian to need a hip replacement in a few years as the stronger steroid causes bone issues. Umm....YEAH!
   Instead of doing the initial six week induction period for a third time in Brian's young life the doctor modified it. Brian will have four weeks of weekly infusions of Vinblatine with steroids on week one and week three. Then he will move to a every three week infusion followed by five days of steroids. He will have to do this for one year.
  This is a lot. The infusions are not fun. Getting Brian accessed has become more of a struggle. He doesn't like "being hooked up to a machine" as he says. And he isn't too fond of going to the doctor at all. This past Thursday the kids and I had a picnic outside and we saw a helicopter flying. We live near Sacred Heart and the airport. Brian has seen Life Flight land on the roof at Sacred while we were at one of our appointments. When one of the kids pointed out the helicopter Brian smile mischievously and stated, "I hope it crushes my doctor." He knows that the helicopters land at his doctors office and he thought if it crushes the building then he wouldn't have to go to chemo anymore.
   Please keep our family in your prayers. We pray that we are a testimony of God's faithfulness and reveal His glory to the Pediatric Hematology/Oncology doctors and nurses. Well, and the other six thousand nurses, specialist and techs we come in contact with.  :)

And lastly, Brian will have to have a chest X-ray this week because he STILL has a nasty cough from when he was sick in January.

Monday, March 14, 2011

Some News

Just had to share some cute pictures we have taken recently. We have lots of news to share. But first, aren't  our boys adorable?! They are best buds. Super cute.

  Our family has been through some pet trauma the last year. Fred and I have had two dogs since before the kids were born. Our kids are used to animals being around and love it. Well, last May our mutt (which the vet said looked like a Redbone Coonhound) killed our cat. It was pretty aggressive so we put him down. (He had started to turn on our golden and attack her too. It wasn't an isolated one time act of aggression.) Three months later Ansley found our Golden Retriever dead in the back yard. She must have died of a lonely heart because there was nothing wrong with her. (Fred teased that Hawn had the best three months of her life since Ansley was born and the dogs took back burner.) We went from two dogs and a cat to no animals in a matter of months. We have been wanting to get the kids a new golden but quite frankly they were too pricey. Fred and I prayed about it, thought about it and talked it over and over and over. Finally we decided to do it. When I called the breeder to discuss coming and picking out a pup from the litter she opened the conversation with "I'll be completely honest. We are moving in a week and I have two dogs left that I haven't sold. I have to get rid of them. I will take whatever you can give me." What a blessing!!! Every time we are patient and cover an issue in prayer God blesses us. We are happy to announce the newest addition to our family...Eva Schreiber.
Brian picked out her name (and everyone agreed) after his beloved Wall E movie. Eva is our baby Golden Retriever. We are super excited about our new girl. All four kids are eager to participate in the care and training of our new dog.

   Mr. Brian had an appointment last Thursday with the Hem./Onc. doctor. It was a regularly scheduled infusion, but we had planned to address the Histio symptoms that are not going away. More info coming but as of right now we know that the doctor is going to be changing Brian's treatment. The meds he is taking are not working. Our doctor is going to contact us in a week after he has the opportunity to discuss Brian's case with one of the leading doctors in Histio research and treatment. Our doctor has e-mailed with this other doctor before. We are very thankful for the thought, time and concern our Hem/Onc doctor puts into Brian's case. Please pray as we go through these changes. What we do know is that Brian will have treatment for one full year. The clock starts over now. He will NOT have his port out by five.