One Step Forward, Half a Step Back

Sorry for the late post. I had a chance to have dinner with my best friend...how wonderful!

Here is the latest. The oncologist called us back this morning. She is on her way out of town, but wanted to give us the info she has received from Sloan in more detail. Basically, she told me that she faxed all reports to them (about 325 pages!) and that I needed to call Dr. Laquaglia's office to talk about insurance. I called them during nap time and it was quite frustrating. They told me they have never heard of Brady or spoken to our oncologist...huh??? She also said they hadn't received any fax in regard to Brady. She went through the whole song and dance about what paperwork they would need to even have a chance at an appointment. I reiterated that I knew what they needed because our doctor had called there yesterday and since passed the info on to us. I also told them that our doctor had spoken with someone who told them that late March might be a possibility for surgery. I hung up with them and instantly called the NP at the oncologist's office. She is SO fabulous and got right on it. They re-faxed everything and had no explanation for why Dr. L's office claims to know nothing about Brady. All I know is that they will know quite a bit about Brady by the end of the week because I will be calling daily. Here we go again, advocate, advocate! The secretary did tell me that late March could still work if we can get things together quickly. That is an area for prayer!

I'm in touch with a wonderful case manager at our insurance who has been a great help. She is helping us with the details of making sure things are covered and approved ahead of time.

We continue to rack our brains as to how this whole scenario in NYC will play out. There is just no way to predict how long we will be there and all of the details. We are also in touch with a few families who have walked this road before. We've met one family in cyber world who spends a lot of time at Sloan and to whom I've been able to ask a lot of practical questions. Please pray for this family...their son Eli has Stage IV NB and his battle is much more involved than Brady's and he is a true warrior. There are so many children fighting this fight. My heart aches every day thinking of families who spend months apart in order to seek treatment at Sloan.

Brady is doing great! I gave him his "sink bath" which involves taping up the tubies and being careful not to get the site wet. After his bath I flushed both lines. No tears from my brave boy! He has come so far...my heart bursts with pride at how amazing he is:)

A Shocking Second Opinion

I'm just writing about this early this morning because I came home last night to sleep. I wanted to write sooner, but honestly, I was just too exhausted.

The oncologist came into our room last night with a rather shocked expression on her face. We knew the only news we were waiting for was the 2nd opinion from Sloan. She said she had spoken to them a few hours ago and that she had been trying to process what they said ever since. It seems their opinion varies greatly from the treatment plan laid about by Strong (which is according to national Children's Oncology Group protocols for treating neuroblastomas like Brady). The doctor at Sloan said that for Brady's Stage 3 NB they would NOT do chemo, instead they would use VERY aggressive surgery, possibly many surgeries, to try and take out the cancer. You are probably as shocked as we were as you are reading this.

Our oncologist said that their opinion shocked her as well. We spent the next 40 minutes hashing out the details, the research, the what ifs. Basically we have been giving two choices, two very different ways at hopefully achieving the same outcome. Each choice carries risks, possible life long consequences. Both hospitals are throwing around the figure 90% as a possible chance at cure (not sure if that includes long-term cure or just short term remission). Here is a a little more about the two options:

Option 1: Go to Sloan Kettering in NYC. Have their surgeon, who does 5 NB surgeries a week, operate on Brady to remove as much tumor as possible. Rescan to see where areas of cancer remain. More surgery.
pros of this approach: No long term side effects of chemo
cons of this approach: Brady's tumor involves his spinal cord. This is VERY risky surgery, just as his surgery was that started this whole process. There is serious risk of paralysis, or other neurological complications, also the risk that comes with surgeries. Our other thought is, how can they be sure they are getting all of the microscopic cancer cells that are in his body? It seems logical to us that relapse would be a strong possiblity with this approach alone.

Option 2: Complete 2 rounds of chemo at Strong. Rescan. The 2 round study says that it expects to see a 50% reduction in tumor size. After chemo, go to Sloan Kettering in NYC for surgery by their surgeon to remove what is left.
pros of this approach: The idea with chemo is that it works on the whole body, hopefully killing any cells, anywhere that are cancerous. By using chemo to reduce the tumor size, we hopefully can improve the outcome of surgery.
cons of this approach: Chemo is poison. The long and short term side effects can be horrendous. Organ damage, infection, and sterility are just a few possible ones.

Our doctor will be stopping by this morning to see what we have decided. Our logic seems to be leading us toward the 2nd option, kind of using both methods in moderation. However, we are haunted that the experts in the field at SK are giving us a different suggestion. We wish we could just go down to NYC and meet with the docotr. But time isn't on our side. We need to choose and get started.

Our need for prayer is simple: God lead us with your grace in the direction we should go.

Thank you friends and family for continuing to follow us on this roller coaster ride. Brady is SO worth it:)

It's All in the Details

We survived our first night at the hospital. It was rough, little sleep for Brady or I. The surgery team came in and expects his surgery to be this morning at 9am. I feel like I'm bursting the bubble of excitement about chemo with the info I'm going to share with you. Remember the news about 2 round of chemo being a possibility? Well, it still is. But after a more lengthy discussion with our oncologist last night, it seems the 2 rounds of chemo is a "research study." She explained it like this: 8 rounds of chemo used to be standard for this stage of neuroblastoma in children. Chemo is a poison to your body, and produces many side effects, some can cause long term damage to parts of the body. In recent years, 4 rounds has shown to be successful in treating the kind of cancer that Brady has. Now that 4 rounds has shown to work, they are experimenting with 2 rounds. The thought is that if two rounds can get rid of the cancer, with fewer side effects, than that is a better treatment plan. The problem is, the chance of reoccurrence may be higher with only 2 cycles. So for now we are still in the discussion stage of what to do. We are waiting to hear from Sloan Kettering to see what they would reccommend. It sounds like it will be left up to us to decide.

Brady had surgery at about noon today. He hadn't eaten since dinner last night, and had two rounds of steroids on an empty stomach. Needless to say he was quite a grouchy boy. The surgery was pretty quick and he did well. The Broviac is placed the left side of his chest. He came out of surgery very upset...I was able to be with him in recovery, but he was hurting quite a bit and was just frustrated. Now we are up in the room (about 3 hours later) and he has since had a lot to drink, some goldfish, and is talking and sitting up.

We are expecting to meet again with our oncologist tonight. Chemo might start tonight, or maybe tomorrow morning. It all depends on the Sloan Kettering info and some further discussion. Please keep praying, pray for:
1. Comfort and rest for Brady. His little body is very beat up right now (lots of owies!) Pray he gets a good night's sleep.
2. Clarity for Matt, I, and our treatment team as we decide on the best treatment plan. What tough choices we have to make, we are trusting God to lead us in the direction we should go.
3. Continued strength for Matt, I, and our families as we continue to spend so much time apart. I miss home and the kids so much;)
4. Safe travel for all of us back and forth. I'm thinking about going home tonight and getting some sleep so Matt can stay with Brady tonight. We are realizing that there is little sleep in the hospital with a toddler!

Thank you for continuing to pray for us!

Sweet Brady

I just wanted to quickly share some precious pictures of Brady from last night. What a brave and amazing boy he is. We got to snuggle for quite a while and it never felt so good to hold a baby in my arms. We will update again later today.