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!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 :)

Psalm 55:22

"Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken."

I read this verse, one I've read several times before, a few days ago in a devotional. It has been stuck in my head ever since. The first part of the verse is something I'm learning to do more and more everyday. All of the trials, all of the worry, all of the anxiety...I'm working so hard every day just to lay it all down to Him. And He is sustaining me! Am I the picture of perfect peace? Definitely not. But I am being sustained. The 2nd part of the verse talks about "the righteous not being shaken." I certainly feel like I've been turned upside down and shaken! But, I'm still going to cling to the hope that God will see us through this...I'm praying that God will sustain my faith, that it won't be shaken.

In the past week it is almost like life is "normal" again (as normal as life can be with 4 kids under 2!) Brady seems so healthy...he is gaining new skills, new words, he laughs, he gets mad, he tackles his brother. It's very sad for me to think of plucking him once again out of his home and taking him to a place where they are going to "make him sick." I know the surgery is going to try and get rid of the tumor, but the risks of a surgery like this are very real, the setbacks are disheartening. So, there I go again with those burdens...please be praying that I can just keep surrendering them to He that has faithfully sustained me so far. Thanks for bearing with me through that little "therapeutic release!"

Sloan did call today and told me that the team had reviewed Brady's information. They are trying to set up a time for him to come for consult/surgery. The office kind of put us on "red alert" that it would probably be the week after next, but it could possibly be next week. Hopefully we will hear from them tomorrow.
The preliminary report for Cara's MRI looked good, now they go through it with a fine-toothed comb.

Matt is working on uploading some great video. I will update later...(Brady stood unassisted today for over a minute!!!)

The Storm Rolls On

The day started off with a bang. The hospital called to tell me that Cara needed a recent physical before they could do the MRI. I knew we were in trouble because she hadn't been to the doctor since October. I called the new pediatrician's office and she was amazingly accommodating. She told me they would fit Cara in at 11:15. So, instead of Matt taking her, I packed her up and took her to the doctor for the physical then on to the hospital for the MRI. Matt wasn't due home from work until 11:15, so he took Allie to the doctor at 1pm.

Cara was scheduled for 1pm...she didn't even go in until 2:30. So the poor thing hadn't eaten since 7pm last night and she missed her nap time. She was VERY good though, charming everyone she could find of course. I got to go with her as they put her under anesthesia and she did fine. She was done at about 3:45. She woke up really grouchy and tried to pull out her IV (that's my girl!) She cried most of the way home, but after a few minutes home she was fine. The radiologist came out, and knowing our situation, she looked at me and told me there was nothing "catastrophic" viewable on the scan. We won't get the details until tomorrow, but I can live with nothing catastrophic until then.

On to Allie...unfortunately today we found she has a heart murmur. The doctor detected what she thinks is a ventricular septal defect, basically a hole in the lining between the lower chambers of the heart. Most of the time these will correct themselves without incident. However, she did want us to see a pediatric cardiology specialist. So, off we go to another specialist next Tuesday. Other than that, she is the picture of health, a real butterball (92% in height & weight). She is the first Williams baby to make the normal growth curve by 4 months...go Allie!

I know you are probably thinking "what next?" Yes, I think that way too...A LOT! It's really easy to get stuck in the "why me" way of thinking, I do it at least 5 times a day!!! I'm trying, trying so very hard, to focus on the hope that I have in my faith. One of my new favorite songs:
"Our Hope Endures" by Natalie Grant

You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

I just have no doubt that God is right there with us, everyday giving us strength, putting wonderful people in our lives, and brining so many people together in prayer!

Nothing from Sloan today. I'm planning on calling tomorrow to check on progress. Thank you for your prayers today:)

An MRI for Cara

Cara's appointment with the eye specialist went well today. Remember we were bringing her there because for a year now she has tipped her head (almost 45 degrees) to her left side when looking at things in the distance. I brought several pictures to show the doctor of her doing this and he was quite surprised at the severity of the tilt. He did an eye exam and noted that her right eye is moving in an upward and out pattern. This is consistent with 4th nerve palsy (what I had googled and suspected it was). The problem is that last time he noted this happening with the other eye, so he hasn't established a clear pattern. He wanted to wait three more months. He knew by my facial expression that I was upset by that suggestion. I calmly and politely explained our life in the last two months and told him why I was no longer comfortable with a "wait and see" approach when it came to diagnosing problems. He was VERY kind and understanding and he instantly told me that he would order an MRI to rule out something more serious. I asked him "what is the worst thing it could be?" and he told me "a brain tumor, but don't worry, it isn't." He said that the MRI will most likely show nothing but it will give me peace of mind. At that point we will watch it for three more months and see if the right eye continues to show that upward, outward movement. Once a pattern is established and if the head tilt continues, he will be confident that it is 4th nerve palsy, and then a surgery will be necessary to correct. This I can handle... So we called our favorite MRI nurses Sharon and Nancy at Strong and told them that we will probably only be in town next week and if they could squeeze us in that would be great. They got a cancellation, so Cara will have her MRI on Tuesday. Just like both of Brady's MRIs, she will be under general anesthesia (yuck). Unfortunately the appt is the same day as Allie's 4 month appt. Allie really needs to get her 4 month shots, and we can't reschedule due to Brady's surgery coming up...SO, Matt will take Allie and I will take Cara or vice versa. By the way, Cara was darling throughout the appointment...she was flirting with an older man in the hallway saying "Hi guy! Cara, pretty!" What a nut...

The only word from the insurance company was that we will only be able to get approval one step at a time for now. That means we have our first appt at Sloan approved, from there, the doctor at Sloan will have to document medical necessity for the surgery (uh, it's a tumor??!!??) and then we will submit it "urgently" while in NYC. Sounds like more of a headache, but this is the way the world on insurance works.

Matt is trying to upload a video right now of Brady doing some walking while holding onto grandma today. He is so much more coordinated and quick with his movements. It seems all that is lacking is a little strength and balance. We did cancel our PT appt for next week as we have way too much going on. It didn't seem logical to go to one appt and then have to take a break while we are in NYC. We will start up as soon as we are home again. UPDATE: CLICK BELOW TO SEE THE BRADY VIDEO!!

Something to pray about: We are going to try our best to get all 6 Williams TOGETHER in church on Sunday morning. This is so important to me as I don't know when we will be able to do this again. Be praying that God blesses our hearts and that we have a wonderful time worshiping together with our church family.

CLICK HERE FOR BRADY VIDEO