It's Been Four Years

      Tomorrow is the 4 year anniversary of Brady's Neuroblastoma diagnosis. There are so many dark memories of that day and those that followed. It's would be so easy to dwell on that aspect of things. And truthfully, there are moments when I do. But this January 21st, I am choosing to focus on the greatness of my God. He has seen us through those dark days of diagnosis, surgery, chemo, more surgery, and healing. And for reasons I hope to one day understand, he has restored our family and blessed us beyond measure.
       As the mom of a survivor, it is so hard to fully "accept" that my son is alive and well. Some call it survivor's guilt, I just recognize it as an intense awareness that for some, the fear that I carried for so long has become a reality. That some must walk the path of life after losing their precious child breaks my heart into a million pieces. But my trust in a Savior that promises that he works all things together for our good allows me to continue to mourn with those who have lost, while still praising God for Brady's healing. What a delicate balance that is.
    I sat here tonight and read through the notebooks I used during the time of Brady's illness. I had one where I kept medical notes, phone numbers, and questions I had for doctors. The other notebook is where I kept lists of cards that were sent to us, meals that were made, fundraisers that were held, and donations that were given. I am in awe, even four years later, at the amazingly generous people that God put in our life during that time. I have pages and pages of names of people who supported us. I read the cards again and just cried. We NEVER felt alone. Thank you if you were one of the hundreds who prayed, gave from your own family's money, took time to write a note or make a meal, or showed that you cared in some other way. Matt and I are forever challenged to give more generously and to step out and help those in need.
     I also came across some notes that I had written for the time I spoke at the Genesee Cancer Assistance Festival of Hope. One of the last things I said was, "I like to sit and think about years from now, when Matt and I watch Eli, Cara, and Brady graduate from high school. On that day I am sure that I will be reminded of his battle with cancer. But all of those years from now, I pray that I can look back on his journey and feel proud that my son was a warrior against cancer. It is my hope that God will continue to use Brady's life and story to inspire hope in others for many years to come."
      Yes, yes, yes! I still feel this way. Brady is just a 5 year old boy. But, his little life is a testimony! It is always my prayer that through his story we can point to Jesus. Our hope is in him, and we trust that he will continue to use Brady's life to bring people into a closer relationship with him! So today we celebrate how far God has brought us as a family.

Those who have read the blog for years will probably remember these pictures!

(warning: some images are graphic!)


The first time I held Brady in the ICU after his spinal surgery (Jan2009), the day he was taken off the ventilator.

 

 The ladies from Angels of Mercy praying over Brady at a benefit in his honor. I thought, and still do, that he was so handsome with a bald head!

 

 

 

                               Adjusting to life with a Broviac catheter for chemotherapy.

       
                           At Memorial Sloan Kettering (remember those bunny ears?)
                                                                just before his 2nd surgery.
              

                                          ;

                                       Recovering after 2nd surgery, while still recovering from the first!

 

 

 

 

Learning to walk, ride, and get stronger through months of physical therapy.

 

Committing as a family to help raise money for pediatric cancer research and to raise awareness!

 

 

 

These 4 blessings are the light of our life. They are as close as can be and Matt and I couldn't love them any more than we do! 

                               

                                    I can't wait to see where the next four years will take us!

 

(photo courtesy of Kristen Hamm Photography)

 

Jeremiah 29:11

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

 

 

 

Depends on How You Slice It

Brady had his scan today to follow up on October's developments. As always, he handled the process like a brave boy. He walked down to the MRI room with a smile, allowed the anesthesia team to put the mask over his face, and fell asleep like a good boy. He was under for about 2 hours and awoke quite groggy, but rather contently. His first request was for a cookie, followed by his second and third requests...cookie and cookie, respectively. I emailed the doctor when we got home this afternoon and asked for results as soon as they were available. I wasn't sure if the oncologist would call us with only a preliminary report available today since last time the final report revealed that the spot had indeed changed. But alas, our doctor who always seems to be working, called me at 8pm. His words were that, "the report looks good. The spot looks the same, if not possibly a bit smaller. It literally could depend on how you slice it,or how the image is taken. I am taking this as a good omen for the new year." We meet with him next Thursday for our follow up appointment. He will go over the final report and hopefully make some sense out of all of this. This tumor, or "the spot" as we call it, is one strange mystery. It stays the same for years, then it strangely grows, now it is the same again, or perhaps smaller. What will it do next???!? Matt and I are sure that the power of prayer is at work in Brady's life. What we can't make sense of is just as it should be in the eyes of God. There is so much peace in knowing and trusting in that. Thank you if you are someone who lifts Brady up in your prayers. Thank you if you are someone who offers kind words of encouragement to us. Knowing that we have so many who continue to support Brady is such a blessing. />

On the Offensive

Believe it or not, it has been one month since Brady's scan. Today Brady and I met with our local oncologist. His first question to me was, "So, have you had a chance to digest everything?" And the answer is, yes. Yes, we have.

It is a unique situation in that despite this recent "change" within Brady's body, nothing else has changed. After the initial shock, fear, and grief passed, we have just settled back into normal life. Certainly there is that tiny black rain cloud hanging over the corner of our home, but most days it has been overshadowed by the crazy-fun-loud life with our 4 under 6. Who has time for cancer talk?

Dr. Korones asked me if I wanted to "see" the film of the recent scans. It was very interesting as it was a view looking from the bottom up. The spot looked huge, although it is only centimeters big. It had a very strange shape and Brady yelled out, "Did I swallow a hairdryer?!?!?" What a nut!

There is a vertical sliver that runs along his thoracic spine (think between shoulder blades) and then at the top of this piece it extends in a right angle toward his spine. I did not like seeing that the horizontal segment butts right up against his spinal fluid. I will never, ever forget seeing the original tumor when he was diagnosed and how it almost completely strangulated his spinal cord. There was almost no spinal fluid visible, which accounted for the fact that his legs were almost paralyzed. This time, however, the spinal fluid is completely fine. This spot is just sitting there, right next to it though, and that was very unnerving.

So, what do the experts think?
The experts think that this spot is slow growing, and possibly could be done growing.

The experts think that we should rescan in 3 months from the last scan (January). If the spot remains unchanged, we will rescan again in 3 months. If it has changed, we will stay on the offensive and decide if surgery is necessary. The surgeon in NYC is very confident that they can remove this spot.

 Many have asked, why not just take it out, regardless of it changes or not? The experts are advocating the least invasive approach. Brady's body has already endured 2 radical surgeries, including a 5 level laminectomy. Spinal surgery is risky business. He already deals with life long side effects from the first two surgeries, and if we can avoid further risk and complication, we have to follow that plan.

  Our doctor said this to me today. "I am fully confident that Brady will go on to live a full life. I am somewhat confident that no further surgery will be needed. I am very confident that this spot is a slow growing, most likely mature Neuroblastoma-Gangliorneuroma. I am very confident that we will stay ahead of it"

Matt and I have gone back and forth about whether to stay here for scans in January or go to Sloan. For right now, we have a scan scheduled here in January. Our doctor here will send the scans to the NB team at Sloan afterward. Matt and I are praying on this decision.

We are very grateful for the kindness shown to us this past month. Your prayers and encouragement have been wonderful. I joke all the time that it is hard to be my friend. The non stop drama for the past 6 years is exhausting to witness, I am sure! I hope though that the story of our lives is more a story of God's faithfulness, than one of trial...one of abundant blessings, more than struggle.

Hello Old Friends

They say no news is good news. I guess that is the best excuse I have for not blogging for almost a year.

We are coming up on four years (January) since Brady's diagnosis and well over 3 years since his treatment ended. He, as well as his brother and sisters have been flourishing.

We have continued on our follow up schedule of MRI every 6 months here at our home hospital. The end has been been in sight recently as our oncologist has told us that we have 5 years of this schedule to complete, and with Brady's latest scan this month we had 2 years left!

I'm so sorry to say that the plan has changed.

The real reason I'm updating the blog is to let those who love our family, those who have prayed with us, and even though who just follow our story to learn more about this disease know that there has been a bump in the road, for lack of a better term.

Brady had his MRI under anesthesia on October 2nd of this month. As I always do, I emailed our oncologist and asked him to call us right away to let us know the preliminary results. He called late that evening and let us know that preliminarily, everything "looked good." We breathed the familiar sigh of relief and celebrated another scan down!

One week later, on October 9th, the oncologist called late in day to tell us that the final radiology report did not, in fact, come back "good." You may remember that after Brady's final surgery, there was a small piece of "something" that the surgeons were not able to remove from the area next to his spine. Due to the extremely delicate nature of his surgery at Sloan, to access this small piece would have required turning Brady which would be too risky. The surgeons and the oncologist thought that leaving this piece, given Brady's type of tumor and how these tumors usually respond after surgery, would not likely cause a threat to him.

The doctors have never been able to give Brady a diagnosis of "cured," "no cancer," or "No Evidence of Disease" as it called in the Neuroblastoma world. He has been labeled as Stable Disease for the past 3 years given that there is no way to tell if the "spot" is cancer or scar tissue.

So back to the phone call on October 9th. Our doctor told my husband that this scan, when compared to those done back in 2009 after his 2nd surgery, show that that the spot has grown. He estimated that it had grown by .5-.8 centimeters. Clearly this change is not big compared to the original tumor. However, a change at all means that the assumption we had been trusting in for 3 years, that this thing was a "dead tumor" or scar tissue, was not true.

Our doctor here is not a specialist in Neuorblastoma. He is a brilliant and wonderful doctor and person, and he is also humble. He absolutely knew that he wanted to consult immediately with the doctors at Sloan in NYC. He told us that he would send Brady's scans down to Dr. Laquaglia, the surgeon that performed Brady's final surgery in April of 2009.

So we began a period of agonizing waiting. We waited 6 days with no word. I called Sloan myself the following Monday and found out that Brady's scans were received and that soon we would hear something from them. Our oncologist called next and told us that Dr. Laquaglia had asked that Brady's case be reviewed by the tumor board there on October 23rd. We would have another week of waiting. The tumor board is made up of surgeons, oncologist, and practitioners on the Neuroblastoma team at Sloan. It is a meeting of minds of the people that have the most experience with NB. They make decisions and recommendations based on best practices for children with NB.

October 23rd came and went. We knew that the tumor board met let in the day and prepared to hear from them the next day. But we didn't. I emailed our oncologist Wednesday night and he answered back that he hadn't heard anything, but would try to find out some answers. By Thursday morning I couldn't stand the waiting anymore. The scan had taken place over 3 weeks ago and we still didn't know what we were dealing with. I called Dr. Laqualgia's office in the morning. His secretary told me that the tumor board DID NOT discuss Brady's case because of some insurance glitch. Apparently, they now have to charge families for tumor board review and they were trying to access our insurance to do so. I was infuriated that we were not made aware of this. We would have immediately agreed to pay out of pocket had we have known. The secretary asked to put me on hold. So I held. Five minutes on hold...ten minutes...twelve minutes. I was just about to hang up as I thought I might have been hung up on. All of a sudden I hear, "Mrs. Williams? It is Dr. Laquaglia."

I sat down in my kitchen and for the next 10 minutes I spoke with the best Neuroblastoma surgeon in the world. Here is a summary of what he said:

-The “tumor” (we are once again referring to it as a tumor) has grown when you compare its size now to the size it was right after surgery in 2009.

-The growth is small, but it is definitely measurable.

-It is not something that just happened in recent months, but more likely has taken place slowly over time.

-The tumor is in one of the holes that goes from the spinal cord to the outside of the spinal column.

-Sometimes tumors like Brady’s do come back a bit. We can be encouraged that if it were a super aggressive cancerous tumor, it would be bigger and growing faster. This is “good news.”

-He theorized that it might be turning from Neuroblastoma to Ganglioneuroma. Ganglioneuroma is a benign tumor and sometimes Neuroblastomas mature into Ganglioneuromas. There is no way to know for sure which it is.

-The concern is less about the tumor itself and more about where it is and possible neurological damage.

-His recommendation was to "wait and see." He would like to rescan Brady in 3 months.

-If there is more growth, we will reevaluate. .Surgery will be the recommended course of treatment if one is needed. Dr. L is confident they could get this thing out. He indicated that Sloan will always advocate surgery only if necessary.

Our oncologist and I discussed the recommendations over email later that day. He fully agrees with Dr. L's assessment and also let me know that Dr. L did review the case with an oncologist on the NB at Sloan.

Matt and I have many questions that we are left with. Not the least of these is when did this "tumor" start growing, or did it ever stop? Perhaps it has been growing ever since surgery, but just so slowly that it was undetectable? Why didn't the radiologists here pick up on the change until now? How long will we now have to monitor this tumor? What sort of neurological damage could happen if it grows?

The next step is to meet with our oncologist here for follow up on November 8th. In the meantime we have to decide if we will continue Brady's follow up care here or if we will go to Sloan. We always said that we were comfortable staying locally if nothing unusual came up on his scans. Well, the unusual has happened and now we must decide. It sort of seems like we would be cutting out the middle man by going there, but we also respect and trust our doctor here so much. Unfortunately in the world of pediatric cancer, your local oncologist's experience just can't compare with that of the NB team at Sloan. We need to figure out insurance issues, traveling arrangements, and of course just handling life here at home if while we would be gone.

There you have it. A really big, sort of not so great update. We waited several weeks to make tell those outside of our closest friends and family because we just haven't known what we are dealing with. Our biggest concern is the well-being of Brady, Eli, Cara, and Allie. They know nothing of what is going on with this, and for now, that is okay. We will have to tell Brady when it comes time and figure out how to explain what is happening in a way that is not traumatic or causes him to worry. We ask that you use discretion when speaking to us in front of our kids regarding this issue. Their sweet innocence is such a precious gift.

I think I have asked for more than my fair share of prayer in my 33 years. If you wouldn't mind, we could use your prayers once again. I could write an entire post just about the spiritual journey I have been on this past month, and perhaps I will sometime. For now, just know that we place our trust in the God of things seen and unseen. He knows our joys and sorrows, and we know that he listens to those who call on His name. Thank you for doing so on our behalf.

With love,

Megan

My Baby is 3!

Tomorrow is Allison's official birthday. Today we officially celebrated!


The theme of her party was owls. It was so much fun for me to plan. It seemed that everywhere I went, I saw owls!


Here was her party invite. I purchased a pdf from etsy.com I think I paid $11.95 for the designer to personalize the card and then email me the pdf. I then saved it, took it to Target, and printed the invites out as a regular picture size for 32 cents I think.



My mom and I were shopping at Walmart the other day, and I saw this silly bat pinata on clearance for $5.00. As soon as I saw it I knew I could transform this little bat into a beautiful owl! My mom has the before picture on her phone...all I have is the after picture. The kids and I named her Ollie the owl!
She was WAY too cute to let the kids whack with a bat. So instead, she was our centerpiece in the kitchen. I used a woven basket as her "nest", turned my stock pot upside down inside the basket, covered that with a brown fleece blanket, and then added a few sticks we had collected earlier in the week. Cara was happy to lend Ollie one of her bright pink hair pretties to wear! I think she may have to find a permanent home in the girls' room!



Here are a few more owl touches that were around the house!

These were just some foam owls that I bought in a pack from JoAnn Fabric for under $4.



I also used the foam owls to make a garland. I had several great pictures of Allie wearing her owl hat on a recent trip to a pumpkin patch with her preschool.









Unfortunately, most of my pictures don't have our friends and family in them! I'm always so busy during the party, that I take many of my pictures before it even starts! My awesomely talented photographer-sister-in-law will share some great pictures with me soon! I'll have to update with more "people shots" later.

I found these cute foam owl hats at Michael's.
One of my favorite details was the adorable owl pitcher that I found at Christmas Tree Shop (love that place) for only $1.00! I filled it with gummy worms. They were a HUGE hit with the kids. I am definitely going to keep this cute little piece out somewhere in the house.

If you haven't tried pinterest yet, what are you waiting for?!? I love gathering ideas. Gathering recipes. Gathering quotes. Pinterest is a place to store all of the wonderful tidbits of creativity that you find online. I saw someone use branches as a centerpiece on pinterest, and that is where I got the idea for these. The tiny owl ornaments that I found at JoAnns were the perfect touch!


Allie gave owl notepads to the girls and green owl bags to the boys.
Here is the birthday girl!
Certainly the CUTEST detail at the party was the awesome cake made by Jen Kirkum of Kirkum Cakes.

Brace yourself for some serious adorable-ness!

I just set it right on the cake stand my mom gave Allie to use on all of her special occasions in life, and added some branches around the bottom!
This is what it looked like with a few up lights and when we lit the candles.
After we lit the candles, big-brother-Eli helped Allie blow them out. Allie yelled, "Eli, you are not supposed to blow the candles out!" So, we lit them again, and she got to do it all by herself!
For those of you who have known our family a while, you know that Allie's arrival into our family was a pretty big surprise! The triplets were only just over 9 months old when I found out I was pregnant with her. 9 months later I found myself with 4 kids under 2! Then just two and a half months after that, Brady was diagnosed with cancer. That first year of her life was really consumed by Brady's surgeries and treatment. In so many ways that makes me sad. Many of the wonderful memories I should have of her first months are clouded by all that occurred as we fought for Brady's life. However, I believe that God knew just what we needed during that dark time. We all needed a beautiful new baby to remind us that life goes on, happiness can always be found, and that we could still have some joy in the midst of darkness.

We love you Allison Elizabeth! It's okay that you are turning 3...but how about you hold off on getting any older for a long, long time:)

September Fun

The big kids are in preschool each morning from 8:30 until 11. This means that I get lots of one on one time with my baby, I mean almost 3 year old, Allie.

I absolutely love it.

I love just being able to get things done and have her alongside me. I love just  having one small person making demands, messes, and noises rather than 4 for at least part of my day.

Things like just sitting in the kitchen, her eating an apple and me catching up on work, make me so happy.

She can be a handful in the group, but one on one she is delightful and affectionate. I get many kisses, lots of hugs, and we can talk to each other uninterrupted.

Eli, Cara, and Brady have only been in UPK for a week and a half, but I have already seen so many changes in them. They spend a lot of time singing their songs from school, telling me how cool it is when I say “s” words as it is their letter of the week, and then there have been little surprises like this…

Eli couldn’t wait to show me this! I told him how impressed I was that he could tell me the names of these letters. He responded, “No mommy. I wrote this for you. It says Mommy Loves Eli.” 

Wow. He’s a genius. A very, very sweet genius.

This afternoon the kids and I went to Brown’s Berry Patch with some other local moms. It was a gorgeous day and I really wanted to get some great pictures of the kids. Mission accomplished!

Apple picking

On our way there, I told the kids that we would be picking apples and there would be a playground. A few minutes later, Eli said from the back seat, “Okay Mom. I have a plan. You can pick the apples and we will play on the playground.”

Pictures like this will forever be etched in my memory.

This next one made me laugh. Triplets +1