My Day with Eli

I'm stopping in with a brief post and no pictures...sorry:( Life is in hectic mode this week with many Tastefully Simple parties going on and a MOPS get together at our house tomorrow night. Ironically, as I'm sure many of you know, a lot of fun= a lot of work!

Eli had his 3 year check up today, so we made today a date day for he and I. This morning we drove to Canandaigua to visit Matt's grandma who is recuperating after her stroke and heart attack. Eli was quite overwhelmed by being in a hospital-like facility. He started opening up right when it was time to go. We stopped at a few stores and had lunch together. Eli's observations of the world around him never cease to amaze me, and always make me laugh. On our way into McDonald's there was a person walking with a sort-of western hat on. Eli says very loudly, "Is that a cowboy?" Upon realizing it was a woman, he added, "Not a cowBOy is that a cowGirl?" The cowgirl person didn't seem too thrilled with Eli's comment. Not 2 minutes later we were standing in line, and I noticed a foreign man in the line next to us wearing an even funnier hat. His looked like those kind of straw hats that people wear at political rallies (do you know what I mean?). I was trying to shield Eli from seeing him, because I just knew what would happen...

Well, it happened. "Momma, is that a FAR-MER?" The funniest part is that Eli said this and at the same time kind of stroked the man's pant leg. I wanted to crawl behind the counter and start serving some McNuggets! I just started laughing because the people behind us were laughing so hard. Oh Eli...you are TOO funny!

We got caught in a heavy rainstorm and I just pulled into the parking lot of a store and decided to wait the rain out while Eli slept. After only a few minutes, he woke up and wanted to sit with me. I'm going to add "snuggling with your little boy in the car during a rain storm" to my list of one of my happiest life moments:)

We ended the day with Eli's doctor's visit. He continues to be of average height and on the very-skinny side!

I'm Afraid to Think It!

I'm afraid to think it, but it just may be that this virus might leave the rest of us alone? Matt made it back to work today which I thought was downright amazing. So far, the other 5 Williams' seem to be okay. Short of spraying Matt down with Lysol, I think I did a pretty decent job of washing and sanitizing everything he touched. Poor guy...I think I make him feel like he had leprosy or something:(

I grabbed my Eli today and we took a drive to bring daddy lunch at work. He was so cute as he walked in holding the container and said, "Here's your lunch daddy!" Afterward we had to pick up some things at Target. As I stopped at the foil pan section, Eli pointed at the pans and said, "Oooo! Chinese for dinner...Yes!" I'm not sure if you get the connection, but the Chinese place we get take out from once in a while serves the food to you in foil pans! As we checked out he and the cashier were talking back and forth. He proudly showed her his baseball hat and said, "Here's my hat! You like it?" Of course she replied that she liked it very much. Then he said, pointing to me, "This is my mommy. She's nice!" Ooo, he is the sweetest:)

We are coming up on a big milestone in Brady's journey. It was one year ago that we prepared for our final battle (God willing) with Neuroblastoma. On March 31st last year we headed to NYC for Brady's consultation appointment and testing leading up to his surgery on April 6th. Reading my words from that time brings me right back to the mountain of emotion that I was feeling.
written March 27th 2009

Joshua 1:9
"Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Thank you God for the truth in Your word. Thank you for this verse. Please make me the strongest most courageous mom I can be. I trust that You will be with me wherever I go...You'll be with me as I kiss my sweet babies goodbye, You'll be with me as I hold Brady on the airplane knowing where we are going, You'll be with me as I walk to the hospital with him on April 6th, and You'll be with me as I sit and wait during his surgery. Thank you for your promises, and thank you that they are true for me, for Brady, and for everyone who trusts in You. Amen

It is a pretty cool thing to actually have a prayer from a year ago written down. By reading it and thinking about the events of the last year, I can actually see how God has been faithful. I'm not talking about God making our lives without problems, worries, or obstacles. Of course we continue to experience all of those. I'm talking about the part where God tells us that He will be with us wherever we go. And He has been. He was with us the night before we left, as we tried to sleep with the weight of the world on our shoulders. He was with us the morning of Brady's surgery, as we held him tight as unimaginable fear was weighing on our hearts. And He has been with us, sustaining us, encouraging us, and blessing us every day since.

Wherever you are tonight, I pray that you know that God is with you wherever you are:)

Vaseline Boy!

Oh Eli! I have to write this all down so that someday I can tell you how silly and quirky you were as a toddler. It all started last night...

Grandpa was here for a visit and was in the nursery as we got everyone settled down for bed. I had put some lotion on Brady's cheeks because his skin is so dry. He put up a huge fuss about it, so Grandpa was pretending to put lotion on his face and then onto some of Brady and Eli's stuffed animals in their cribs. I guess this idea peaked Eli's imagination. That coupled with the fact that we had fingerpainted earlier in the day led to Eli deciding that he should grab a container of Vaseline off of the nearby changing table and bring it into his crib after we left the room at bedtime.

Somewhere between the hours of 8pm and 11:30pm, Eli did just that. He got the Vaseline, opened it, and proceeded to spread it all over, everywhere. It was all over his face, his hair, his Snuffleupagus, his Elmo, his stuffed dog, little Snuffy, mickey mouse, his sheets, his blankets, his pillow, and about 8 rungs of his crib. I had just dug that dumb container of Vaseline out of the medicine cabinet last week to protect their cheeks when we went sledding. I left it in there to put on their chapped lips. Little did I know...

We decided to let him just sleep and we would clean it up in the morning. And what a mess it was to clean up. Vaseline just doesn't wipe off and it completely stained his sheet. He thinks the whole thing is very funny. I keep calling him Vaseline Boy and he does this stinker face and laughs.

Another funny thing about Eli these days are his out-of-the-blue revelations about the world around him. A few weeks ago, and now every few days since, he just said in the most astonished voice, "Allie can't talk! She can't!" What a funny boy.

We are hunkering down in the cold and snow for a pretty quiet weekend.

If you didn't read about the January 21st project, you can click here to find out how you can participate. I'm really excited to hear from more of you and to share your stories on the blog. I'm sure others will enjoy reading others' thoughts for a change! Please keep your emails mwilliams91@rochester.rr.com and comments coming! Any insights or relections as to how Brady's story impacted you are most welcome! I'm also hoping to have some pictures of those who prayed for Brady or helped our famil in some way. The book will become a treasure for our family for sure:)

Mommy and Eli Day!

Today Eli and I went shopping...and shopping...and shopping some more! I had him out from 10am until after 3pm! That's a long time for a 2 1/2 year old who doesn't get out much:) He was a perfect, delightful, polite, adorable, hilarious, and lovable angel boy the whole time! I dragged him to 6 stores and to all of the big stores in the mall and he never once complained! We even had lunch a Friendly's complete with an ice cream sundae. I know I said this last week, but I LOVE enjoying my kids one at a time. No one is pulling on my pant legs and pulling my attention away. It's the best...

I let Eli bring his good pal Snuffy on our adventure. He dragged that thing around by the snout all day long, too cute! He even told the waitress, "This is my nuffy. He lives on Sesame Street and in my crib!"

Our mission was to find outfits for the boys to wear for our family pictures Saturday. Our mission sadly failed. It is SO tough to find boys' clothes, especially dressy ones. When I did find a few things, they didn't have the boys size and more than one of each item. So the search goes on...

Brady, Cara, and Allie had a fun day at home with Grandma. I'm so blessed to have such wonderful grandparents in our lives. Not only do I trust them completely, but the kids are so comfortable with them and I don't think they miss mommy much when they get to spend time with them!

That's all for tonight! Can you believe Thanksgiving is next week?

Great Day!

I have to admit that I wasn't looking forward to today! Matt leaves for work at 7:30am and gets home at 7:30 pm on Tuesdays and Thursdays. To my great surprise, tooday ended up being an awesome day! Days like this are SO rare here...no tantrums, no major boo boos, no illness...just the 5 of us and lots of fun:) It was way too muggy out for me today, so we went about our routine inside. My friend brought her two boys over in the late morning for playtime and the kids had a great time!

It was hilarious to watch Allie crawling all over today. Of course she wants nothing to do with her baby toys, she kept going right for Eli's prized possessions...he sunglasses, his ice cream cone toy, and his helicopter. He is SO territorial and just got very protective over his things. I heard a lot of, "No No Allie" coming from him all day long. She is very persistent and not at all bothered when he scolds her. This stage should be interesting!

Here is a picture of Eli. He is such a funny little boy. He loves to wear many things and push the strollers around the house. He is totally into the sunglasses right now.

Please Pray for Our Friends

Not too much to report today. We had another day spending time with daddy. I got to go to dinner with my best bud which is always a treat:)

Since I don't have an awful lot to say tonight about Brady (who by the way continues to do great!), I want to ask for prayer for 3 specific people I met in NY. Please pray for these children and their families:

Ben: He was our amazing roomate for Brady's 3 1/2 day recovery on the pediatric unit. He is in his early 20's and has Ewing's Sarcoma. He is a Christian and he had the most genuine, caring, compassionate spirit of any young man I've ever met. He was quite sick from the chemo he was receiving, but constantly worrying about how he was bothering Brady (which he never was!). He had this cancer in his midteens, but beat it. Now he has relasped. His doctors in NC told him there was nothing they could do to fight the tumors throughout his pelvis, other than amputate his entire lower body. His father found a doctor at Sloan who could take out the massive tumor and offer him a good prognosis using chemotherapy. Please pray for Ben, a person in the prime of his life fighting this terrible disease. He has some orthapedic issues as well because of the cancer, and we are praying for complete healing for Ben. He has SO much to offer the world!

Eli: Eli is a 5 year old little boy from Iowa. I met his dad Aaron in the online world right after Brady's diagnosis and he has been a great friend to us every since. Eli has been battling Stage IV Neuroblastoma for almost two years. He and his dad spend many many weeks away from home in order to seek treatment at Sloan. Eli has endured so much in the way of treatment, chemo, radiation, surgeries...He has a contagious, enegergetic spirit. Please pray that that the treatment he is receiving will provide complete healing for Eli.

Nathaniel: Nathaniel is an 17 month old boy from California. I also met his mom Gillian in the online world as he and Brady has SO many similarities. He also has Stage III NB with spinal involvement. He had an emergency laminectomy on the day of his diagnosis because the tumor was compressing his spinal cord, just like Brady's. He and his parents are now in NYC awaiting surgery with Dr. Laquaglia tomorrow morning. We are praying for Nathaniel's surgery to be a success and that the surgery will be the final step in his treatment!

Thank you friends for praying for others fighting this fight. Our trip to NY really opened my eyes to a whole world of suffering children and families. I have not been able to stop thinking about these children and others that we met. It is obvious that this experience has changed me forever. I'm certain that we want to make a difference in the world of neuroblastoma somehow, someday. I'm praying that in time God will show us how we can help other families.

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:)