Psalm 71:14

Psalm 71:14
But as for me, I will always have hope; I will praise you more and more.

This verse really sums up what goes on in my mind lately. Some days it's like a battle between the praise and the fear! I LOVE this verse because of how it handles both of these feelings for me and reminds me that God has taken care of it all! I hope and pray every day for better days for Brady...continued progress physically, no recurrence of cancer, and as few physical effects from his spine surgery later in life as possible.

And my praises!!!
1. Brady is HERE!
2. Brady can move his limbs!
3. He is home!
4. He can walk!
5. He is done with treatment!
6. He is a bright, intelligent, boy!
7. In 5 months his little light has shown so brightly in the lives of so many!

And I have 3 other kids I could write my hope/praise list for! I am working on trying to think of life this way...instead of what I'm pessimistic and optimistic about, what am I hoping for and what can I praise God for. Neat stuff....

Brady report: Brady had a great time at PT today. We got to go to the gym at the Al Sigl center and there were many fun things for Brady to explore. He is working on endurance, walking up inclines, balance/stability, and strength. In just a few weeks the therapist thinks he has made huge strides. We already had to rewrite his goals because he met them already!

We took Allie with us to PT today because she was up most of the night very fussy. We had an appointment with the doctor on our way home. Her ears were clear, so the doctor thought it may be a new cold coming on along with teething. Yuck...

I got an email from Sloan today. They are expecting the final results from the NMYC test back on Friday or Monday. There was a mix up somehow, so they were resubmitted. The last piece of the puzzle before we can breathe a little easier for a few months. Matt and I have decided for sure to do our scans at Sloan. Now we have to decide if we will wait 6 months, or if we go with the initial recommendation of 3 months. We still aren't sure what made the doctors change their recommendation, or if it is just two different opinions. We have a little while to think about it...

Surprise Call from Dr. L

I realized this morning that I never posted this last night! Oops!

The exciting news first! At about 5:30 tonight I answered the phone and I hear, "Mrs. Williams? This is Sloan Kettering calling, Dr. L will be speaking with you in 20-30 seconds." And sure enough, there he was. He was calling to tell me that he reviewed Brady's scans when they arrived last week, and that the tumor board reviewed his case again today. Here is a summary of their meeting:

1. There is a small amount of tumor still left in the foramina (spinal column area). Having another laminectomy (surgery) is the only option to remove it. However this is very invasive. The tumor board feels that given Brady's intermediate risk status, that it is more reasonable to leave this piece of tumor in there.

2. They estimate that somewhere between 95-99% of the tumor was removed! Hallelujah:)

3. The area where the big tumor was in his chest "looks good."

4. The tumor board recommends rescanning him in 6 months. This differs from the 3 month timetable we were originally told. Matt and I have to really think about this one. Dr. L does not want us to continue doing CT scans. He discussed with me the risks of repeat radiation due to CT scans, something we haven't considered until this point because the scans were necessary. He thinks that MRI scans of the chest should give a good look at the chest and spine area. If something shows up, then a CT can be done.

5. Dr. L kind of "encouraged" me to bring Brady to Sloan for the scans every 6 months. I think Matt and I are seriously considering it. There are many reasons to consider it. Sloan doesn't use intubation during an MRI, Strong does. The radiologists at Sloan see WAY more NB cases than Strong, so the scans will be read by people much more familiar with this disease. The flip side, of course, is that by scanning in NYC we will again be fracturing ourselves from our doctor here at Strong. I think we will continue to have that sense that no one is in charge. A lot to think about.



Tonight we celebrate this wonderful news. Tonight we look ahead to Friday's surgery. I can feel God's amazing grace pulling the storm clouds away from our family. I know this road is so long, certainly there will be times of trial ahead. But I'm so happy that God gives me days like today when it is just impossible not to shout praises to Him for all He has done!!!

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We had a great time today with the reporter and photographer from the Daily News. Hopefully the story (and picture) will run Thursday. The photographer loved the Williams kids! I really think Allie stole his heart :)

Eating Out...Always a Good Time

So we survived our eating out adventure. I truly think this may be the first time we have gone out with the whole family since Allie has been born (6 months ago). After church we went to Kaboodles Cafe in Elba. I suggested to my mom that she call ahead and make a reservation for as many high chairs as they had. Our gang of six, as well as my mom, and my brother's fam of four descended on the place to celebrate Auntie Kristen's birthday. All together there were 6 kids and 5 adults. The kids did a really great job and I'm sure the staff at Kaboodles is more than thankful to my family for reorganizing their jelly containers, creamers, and sugar packets. It's no fun to have them sorted by color and flavor anyway!!!

They heard it was Kristen's birthday and made her wear a big birthday hat! Then, this group of four women offered to sing her "Happy Birthday." They were wearing matching jackets and all of a sudden they broke out into four part harmony! Come to find out they are a professional group called Mach Four who were in town for a competition! They were terrific...what a treat!

Some Brady news: Today Brady took 8 or so steps on the hardwood floor. I've come to the conclusion that he is totally capable, he just is STUBBORN! I love his stubbornness though, but I wish he would just stand up and take off! As I put them to bed tonight, we just walked back and forth from one end to the other in his crib. If he can maintain balance while walking on a mattress, then I know he can walk anywhere!!! Come on Brady...you have a whole world to explore!

Monday means phone calls, and I'm planning on starting off the week right! I need to bug Strong about getting a scan date again. We are only 2 weeks away from when he is supposed to be scanned (6 weeks post-op). Matt and I don't want to wait a day longer than we have to. We are more than anxious to get his Broviac out...his skin is so sensitive under the dressing and I want him to be able to swim and play like everyone else this summer.

Answering Your Questions

Today has been another day of insurance headaches. Here is the bottom line at least how I understand it today: The doctors we are seeing at Sloan DO participate in our insurance, however we have to seek prior authorization for procedures done on an out-patient basis because we are technically traveling "out of network" for treatment. Once Brady is in the hospital, all care will be covered without having to do this process. So, for all appointments and tests next week I have had to call separately to our oncologist at Strong and request that they will out a form documenting medically necessity for whatever the procedure and then send it to the insurance. The insurance company then approves it and sends the approval on to Sloan. My suggestion? Once a child gets a cancer diagnosis, someone should authorize all treatment, scans, and tests that bring that child closer to a cure. There would be no reason to want frivolous testing done on your child, so it seems this system would be cost effective for everyone involved. Why should we all waste so much time calling, faxing, and filling out paperwork when it is ridiculously obvious that my child is sick and needs this treatment to live. Sorry, I needed to get that out to a willing audience:)

I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!

Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.

2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!

3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.

4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.

5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.

Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.