Bowled Over!

Once again today I was completely in awe of the generosity of my community. Our 2nd bowl a thon was held, this time in my hometown. Words will never be enough to thank my friends from Jackson school for their hard work in putting together yet another wonderful event. I stand in amazement at the way God is providing for our every need...

I wanted to share a picture of Brady minus hair! I have to say, he has still maintained his handsome charm:) He continues to be nauseous in the morning, but after his dose of Zofran, it seems to improve. He is certainly moody lately, but we just keep loving him the best we can. No other big news today. I did want to share a bible verse that we have kind of "claimed" to represent Brady and his journey:

2 Corinthians 5:7 For we walk by faith, not by sight.
Each step of this journey is a walk of faith. We had no way of seeing this coming in our lives and we have no way to predict what will happen next. We are praying continually that each day will draw us closer to Jesus, each day will bring less reliance on what we think should happen, and more faith in what God wants to happen.

What's New Today

Not too much to report from the Williams household today. Brady continues to hold his own. I think he is queasy at times, but isn't throwing up. He had a little diarrhea, but overall seems pretty happy. His appetite is fairly normal overall. The last cycle his counts didn't drop until around Day 9, so we can expect that the middle of next week he will probably be most sick.

I'm planning on stopping by the bowl a thon in Oakfield tomorrow. We continue to be in awe each day of God's provision for our family. He has placed so many wonderful people in our path along this journey. People may think they are just donating money, or dropping by with food, but truly every act of kindness that has been shown to us has been a tremendous source of encouragement on days when we really need it. We truly feel blessed..

New Pictures

Brady is doing great on his first day home. He did throw up just a little before breakfast, but since then he has been okay. He is less active than usual, but is eating quite well. I have to share an amazing story with you! Today Matt saw Brady sitting in his rocking chair in the living room. When he and his mom went back in the room, Brady had somehow gone from his rocking chair into our large recliner. He somehow must have climbed from one chair to another. I just wish I could have been a fly on the wall. What a boy...

I heard from the oncologist today with the results of his catecholamine level tests. I guess the accurate name for these tests are HVA and VMA (I am learning so many new acronyms!) The test was done just before his 2nd round, so the results reflect the effects of only one round of chemo. BOTH LEVELS HAVE GONE DOWN!!! This is yet another sign that Brady is fighting against this cancer! The doctor said a great result would be a 25% reduction of the levels, his was a little less, but after this round they are sure to go down again! God is so good...

That is all for now. We are having fun visiting with my friend Julie. We all took a walk today and the fresh air felt wonderful! There are a few more family pictures up on Laura's blog. Her work really takes my breath away. You can check them out at momentsphotographybylaura.blogspot.com

We're Home

We arrived home at about 3:30pm!!! Brady tolerated the chemo so well again! No nausea or vomiting so far. Brady took a nice nap all the way home. His hair had been falling out all day, all over the place. We decided to just buzz it into a really short brush cut (almost shaved). So, it's gone and we are moving on...

We had many consults with different doctors today. Here is a summary:

1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.

2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.

3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!

4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.

5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.

6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.

So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.

My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!

God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!

Giggles and Graham Crackers

It's 8am..Brady slept on and off all night until about 7:30. He talked during his sleep all night about "socks on!" No that he is awake he is sitting here with me just being hilarious. I LOVE this boy! Everytime he notices the tubes attached to his Broviac that are giving him fluids he says "Uh-oh..no no!" He is playing with all of the medical equipment left in the room from during the night. Right now he has a paper tape measure in his mouth and a graham cracker in his hand. I tell you, this child's silly side amazes me! No signs of nausea this morning. He was moaning throughout the night quite a bit, but I decided to stick by the choice not to give the Decadron. If we had, he wouldn't be this happy boy this morning.

The rounding doctor told me that CT and MRI will be scheduled for two weeks from now (both done under sedation). A follow up meeting about results will be 1-2 days after that. Neurosurgery is stopping by this morning to look at his back. Someone from physcial therapy is coming by as well to look at him. So, a busy morning here, wanted to share some sunshine with you all this morning!

Thank you friends

You'll notice more blogging during hospital times. Let's just say, there's a lot of down time...too dark to read, so I have my prayers and my computer:)

Thank you all for your comments after my last post. I struggle sometime over whether or not to let it all out and be honest about how I'm feeling. I'm glad to know I can do so and be uplifted. There are so many dark emotions that come along with this journey...ones I never knew I would feel in my life. But like I keep saying over and over, through it all we continue to be blessed too! Sometimes I pray for that..."God I know today there will be trials for Brady and our family, I pray that the small blessings You send will outshine our trials on this day." Simple, maybe too simple, but sometimes that is what my heart longs for.

Matt just left:( Brady woke up upset about an hour and a half ago. We had to take the dumb bag off of him that was "collecting" his pee. Who would want to wake up to that? It took him about an hour to settle down again. He is sleeping now. One drug down, two more to go. I might stay on the computer for quite a while as the thought of climbing into my pull-out chair-bed is enough to make me want to blog all night!
ps Did I mention we have a private room? It was the only space that opened up...thank you God!

We're Here

We made it here at about 6:30 (We were half an hour late due to a stop at Mc Donald's for chicken nuggets---so worth it!) We got settled in the room for about 30 seconds before the nurses came in and wanted him stripped down to weigh him, and to do vitals. Brady really remembers this place and instantly started pointing at the door and saying "out." That was really heartbreaking. We met with one of the oncologists (not our usual one) and I feel bad for her because I just started asking all of our questions. I asked when they would be retesting his catecholamine levels (a urine test that is elevated in people with neuroblastoma--his levels should be decreased if the chemo is working). They put a bag on him to collect his urine, not sure when we will have those results. They told us they would be giving him decadron (the dreaded steroid!) and I just looked at her like she was crazy. Decadron is used as an antinausea med, last time he was taking it prior to starting chemo as a drug to help with post operative swelling. By the time the chemo started his dose was very low. They wanted to start with a small dose and increase to a huge dose tomorrow. If you remember though, he had a lot of adverse side effects (sweating, irritable, swelling, weight gain due to increased appetite). Let's just say we went back and forth on this one with her, and it was decided that he won't be getting it unless nausea is a problem. Our whole philosophy is that he did so well last time, let's just do the same drugs again. We don't want to add anything new unless we have to. I also "fessed up" that I had called Sloan about the possibility of doing the scans there. They looked surprised that we would do that and said they don't really see the benefit. I'm going to see if Sloan calls back tomorrow, if not I'll try again. I guess that decision will be ours.

I asked the doctor about hair loss. She said it would start anytime. After she left I put on Brady's pjs and I noticed hair all over me. It is Brady's hair, it all of a sudden started falling out once we got here. I just broke down at the sight of it (I left the room of course). You are probably thinking, "it's just hair, it will grow back, you knew it was going to happen, why are you so upset?" I just have a hard time knowing that he will now officially "look sick." On days he is feeling well it is so easy to let my mind forget that he has cancer. He looks like Brady, plays like Brady, smells like Brady... Now he won't look like Brady. I've seen cancer change people I love before and they don't look like themselves and it is a daily reminder of the illness inside of them. So that is why it hurts me so.

Matt is here now. He and Brady are snuggled in the chair watching basketball. Brady is getting 2 hours of fluids before the chemo will start. Matt will head home in a few hours. We are praying for a peaceful night...