I'm feeling like a working mommy these past few days! I have been out of my house more yesterday and today than I have in a LONG time! I miss my kiddos and dare I say my "routine?"
Yard sale day 1 was AMAZING! My friend and I have done SO much work for this sale, we had truckloads of things, and we did GREAT! We feel so blessed to be able to make money for our families with just a little elbow grease and time! I'm using our proceeds to throw an awesome party on August 15th...by the way, it's not to late to RSVP to mwilliams91@rochester.rr.com :)
Tomorrow is our 2nd and last day of the sale. I went around and collected 3 more big bins of things to sell. Woo-hoo! Decluttering is a great feeling!
Brady boy is doing very well. He had a fun day with Grandma Sandy (thank you Sandy!!!) and the few times I saw him he looked tired, a little puffy, but happy! We didn't hear anything from Strong today, I'm still quite sure we will be waiting until our appt next Thursday.
Thank you all for your prayers for us this week. I'm so glad that God doesn't grow tired of hearing prayers for Brady! 4 hours of anesthesia is quite a big deal for my little man, and no matter how often he will have to endure it in the next years, it is still a big deal for us. Thank you for staying on our prayer team!!
I'm off to bed with sore feet, a happy heart, and Sharpie marker all over me!
Friday, July 31, 2009
Thursday, July 30, 2009
LONG DAY
I snuck upstairs to write as I know many are probably wondering how Brady did today. We are in "garage sale" mode!!
Brady was an amazing boy today! We left at 8am and didn't get home unil 6pm! We started the day at PT, then killed some time on the playground, and then headed to Strong around 11am. Brady only asked for a snack once, and was a wonderful boy despite no food or drink!
We went back to the MRI room early, at around 12, he was in by 12:15. There was a minor glitch and we had to wait about 20 minutes because the correct documentation wasn't on file (are you surprised? I just laughed!) He was in the scanner from 12:15 to about 4:15! They scanned his whole spine, chest, and abdomen which required several position changes. About half way through Matt reminded me that the nurses had forgotten about the blood/urine collection. They got his blood right before he woke up, and we put a urine bag on as he was waking up. He woke up great, asked for cookies, and was quite silly due to the drugs! He finally peed a little, and we were on our way home around 5:30.
He is feeling fine, a little out of it, but is resting in his bed now! We didn't hear anything alarming from radiology, so we are hoping that is a good sign. However, the changes we are looking for are quite subtle, so we will have to wait until next week for a full report.
Praise God for a good day and for our good boy! Keep praying for great results:)
Reminder:
Yard Sale at our house FRIDAY 9-4 AND SATURDAY 9-2
We have SOOOOOOOOOOO much stuff!
The daily news forgot to put our ad in today, so we need some word of mouth advertising! This is a great sale for expecting moms and grandparents!
Brady was an amazing boy today! We left at 8am and didn't get home unil 6pm! We started the day at PT, then killed some time on the playground, and then headed to Strong around 11am. Brady only asked for a snack once, and was a wonderful boy despite no food or drink!
We went back to the MRI room early, at around 12, he was in by 12:15. There was a minor glitch and we had to wait about 20 minutes because the correct documentation wasn't on file (are you surprised? I just laughed!) He was in the scanner from 12:15 to about 4:15! They scanned his whole spine, chest, and abdomen which required several position changes. About half way through Matt reminded me that the nurses had forgotten about the blood/urine collection. They got his blood right before he woke up, and we put a urine bag on as he was waking up. He woke up great, asked for cookies, and was quite silly due to the drugs! He finally peed a little, and we were on our way home around 5:30.
He is feeling fine, a little out of it, but is resting in his bed now! We didn't hear anything alarming from radiology, so we are hoping that is a good sign. However, the changes we are looking for are quite subtle, so we will have to wait until next week for a full report.
Praise God for a good day and for our good boy! Keep praying for great results:)
Reminder:
Yard Sale at our house FRIDAY 9-4 AND SATURDAY 9-2
We have SOOOOOOOOOOO much stuff!
The daily news forgot to put our ad in today, so we need some word of mouth advertising! This is a great sale for expecting moms and grandparents!
Wednesday, July 29, 2009
Facing Tomorrow
Thank goodness for this garage sale! I've been a busy girl in preparation for the big sale, so it has been a great distraction!
Tomorrow is scan day. Not sure why I insist on getting all worked up as we probably won't even know the results until our appointment with the new doctor next Thursday. I'm assuming if anything is glaringly wrong, then we will be notified. I'm sure Matt will try and find a way to get the radiology report before then!
I'm still plugging my way through the book, "Finding Light in Cancer's Shadow." I came across a great thought while reading tonight. Author Lynn Eib is discussing the fear and paranoia that come with being a survivor, or in my case a mom of a survivor. She says, "You may not be able to completely cancel your membership to Club Paranoia, but you don't have to be a card-carrying member every day!" I love it! Although this week I feel like the president of that club, I know that in time, I will learn to live with these feelings and manage them better. She also reminded me that it is okay to be vigilant, and on top of things...it makes us smart, not paranoid! I think I have a foot in both of those camps though!
So, tomorrow we will leave here by 8am, PT at 9am, to Strong by 11:30am, scans at 12:30am, hopefully home in the late afternoon. I did hear from the NP today who got a call from radiology. You'll remember that Matt and I had several specific requests, one of which being that they just use MRI in order to limit Brady's radiation exposure. I guess the radiology department feels that at CT scan in addition to the MRI is warranted in order to get a good view of the chest. You'll remember that Sloan told us that an MRI would be fine. I guess we have some things to discuss with radiology tomorrow. Perhaps we will go with both scans this time since we are not that far "out of the woods" yet.
Please be praying:
-For Brady as he can't eat or drink until after the scans. He LOVES breakfast and it is so hard to watch him be hungry and not understand why we won't feed him
-For Brady's comfort. These are the first scans since his Broviac was taken out, so he will need to have an IV
-For wisdom and precision of nurses, anesthesiologists, radiologist working with Brady
-For peace and comfort for Matt and I as we keep Brady company and then wait...
We appreciate your love and support more than you know!
Tomorrow is scan day. Not sure why I insist on getting all worked up as we probably won't even know the results until our appointment with the new doctor next Thursday. I'm assuming if anything is glaringly wrong, then we will be notified. I'm sure Matt will try and find a way to get the radiology report before then!
I'm still plugging my way through the book, "Finding Light in Cancer's Shadow." I came across a great thought while reading tonight. Author Lynn Eib is discussing the fear and paranoia that come with being a survivor, or in my case a mom of a survivor. She says, "You may not be able to completely cancel your membership to Club Paranoia, but you don't have to be a card-carrying member every day!" I love it! Although this week I feel like the president of that club, I know that in time, I will learn to live with these feelings and manage them better. She also reminded me that it is okay to be vigilant, and on top of things...it makes us smart, not paranoid! I think I have a foot in both of those camps though!
So, tomorrow we will leave here by 8am, PT at 9am, to Strong by 11:30am, scans at 12:30am, hopefully home in the late afternoon. I did hear from the NP today who got a call from radiology. You'll remember that Matt and I had several specific requests, one of which being that they just use MRI in order to limit Brady's radiation exposure. I guess the radiology department feels that at CT scan in addition to the MRI is warranted in order to get a good view of the chest. You'll remember that Sloan told us that an MRI would be fine. I guess we have some things to discuss with radiology tomorrow. Perhaps we will go with both scans this time since we are not that far "out of the woods" yet.
Please be praying:
-For Brady as he can't eat or drink until after the scans. He LOVES breakfast and it is so hard to watch him be hungry and not understand why we won't feed him
-For Brady's comfort. These are the first scans since his Broviac was taken out, so he will need to have an IV
-For wisdom and precision of nurses, anesthesiologists, radiologist working with Brady
-For peace and comfort for Matt and I as we keep Brady company and then wait...
We appreciate your love and support more than you know!
Tuesday, July 28, 2009
Brady's Moving Along!
Brady had another great day at PT today. I took several pictures to share with you all that he is working on. Today Linda even got him on the tricycle for the first time! Hooray Brady!
Jumping with both feet off the ground
Push that ball Brady!
Kicking a ball and knocking down the tower!
Going down the stairs!
Our plan for Thursday is for Matt and I to take Brady to PT at 8am. After PT we will try and waste a few hours before heading to Strong by 11:30. His scans are scheduled for 12:30. He can only drink juice until 9:30am, no other food or milk. Poor little guy, he LOVES breakfast, and it is going to be hard for him. Hopefully PT and maybe some playground time will be a good distraction.
Please keep your prayers coming!
Jumping with both feet off the ground
Push that ball Brady!
Kicking a ball and knocking down the tower!
Going down the stairs!
Our plan for Thursday is for Matt and I to take Brady to PT at 8am. After PT we will try and waste a few hours before heading to Strong by 11:30. His scans are scheduled for 12:30. He can only drink juice until 9:30am, no other food or milk. Poor little guy, he LOVES breakfast, and it is going to be hard for him. Hopefully PT and maybe some playground time will be a good distraction.
Please keep your prayers coming!
Monday, July 27, 2009
Getting a Time Tomorrow
No big news today. We headed out to my friend's house "way out in the country" for a playdate. She lives on a gorgeous piece of land, in a pretty house at the end of a long driveway, nestled next to a pasture, near a pretty old barn, up the hill from a pond. It was very pretty indeed! And the kids got to do all sorts of "country things" that they don't do here. They got to see some chickens and watch my friend catch a fish from her pond. Pretty cool...
Cara decided that she wouldn't nap today which was very annoying! I hope this is just a one day fluke and not a trend that could end the most tranquil hours of my day (1-3pm).
The pediatric MRI department is closed on Mondays, so I'm hoping for a call tomorrow to give us our time for Thursday. If I don't hear from them by noon, yours truly will be on the horn looking for a time. If our time is later in the morning, we might try and squeeze in PT that day. I'm praying for an early appointment as our little Brady won't be able to eat or drink. It is getting more difficult the older he gets to distract him from the breakfast that he loves so much!
Our hero conquered a new thing today...he climbed into the van all by himself! Way to go buddy! Well I'm off to my basement for some more work among the piles of stuff down there, yard sale in 4 days!
Cara decided that she wouldn't nap today which was very annoying! I hope this is just a one day fluke and not a trend that could end the most tranquil hours of my day (1-3pm).
The pediatric MRI department is closed on Mondays, so I'm hoping for a call tomorrow to give us our time for Thursday. If I don't hear from them by noon, yours truly will be on the horn looking for a time. If our time is later in the morning, we might try and squeeze in PT that day. I'm praying for an early appointment as our little Brady won't be able to eat or drink. It is getting more difficult the older he gets to distract him from the breakfast that he loves so much!
Our hero conquered a new thing today...he climbed into the van all by himself! Way to go buddy! Well I'm off to my basement for some more work among the piles of stuff down there, yard sale in 4 days!
Sunday, July 26, 2009
4 Days Until Scans
I haven't been rained on so much in a long time! First the baseball tournament yesterday, and today the skies opened up again at the church picnic. We managed to enjoy the service and eat lunch, well almost our whole lunch. Then the winds picked up, the thunder rolled, and it started pouring. We decided to head for home and got the kids down for a nap as the storm raged on. My theory is that God is saving that perfect summer day for August 15th!!
Please, please be praying this week for Brady and his scans on Thursday. It's hard to explain to people the anxiety that goes along with these scan dates. Oh how I wish it was just a simple "check up." But really, we are going to find out if the cancer is growing again in his spine or if it has popped up somewhere else in his body. We are PRAYING that these scans will show nothing at all, that God has taken the remaining tumor out of his body and claimed him cancer-free in His name!
My amazing prayer-warrior cousin Brenda reminded me of a verse last week, one that she had written down in a special notebook for me months ago. There is power in this verse!
Nahum 1:9
What do ye imagine against the LORD? He will make an utter end: affliction shall not rise up the second time.
That is what we are trusting in. Please be praying for this for Brady, and for our hearts to be at peace this week.
________________________________________________________________________
Other news: My friend and I are having a HUGE garage sale at my house this coming Friday (July 31) 9-5 and Saturday (Aug 1) 9-2. We are calling it the EVERYTHING BABY AND MORE SALE. Specifically we have complete wardrobes of boys clothes in sizes NB-18 months. We have beautiful baby girl's clothes in sizes 3-6 and 6-9. Included are many, like-new dress outfits (think Christmas and Easter dresses, adorable 3 piece boy dress outfits). We also have winter coats, snowsuits, boots. Other items: Cradle Swing, boy and girl bouncy seats, a really old, but still usable triple jogger, baby/toddler toys, highchair, excersaucers. Also A TON of great household items and some small furniture. If you don't know where I live, please email me mwilliams91@rochester.rr.com. This is a great sale for someone expecting, with a new baby, or for grandparents!!
Please, please be praying this week for Brady and his scans on Thursday. It's hard to explain to people the anxiety that goes along with these scan dates. Oh how I wish it was just a simple "check up." But really, we are going to find out if the cancer is growing again in his spine or if it has popped up somewhere else in his body. We are PRAYING that these scans will show nothing at all, that God has taken the remaining tumor out of his body and claimed him cancer-free in His name!
My amazing prayer-warrior cousin Brenda reminded me of a verse last week, one that she had written down in a special notebook for me months ago. There is power in this verse!
Nahum 1:9
What do ye imagine against the LORD? He will make an utter end: affliction shall not rise up the second time.
That is what we are trusting in. Please be praying for this for Brady, and for our hearts to be at peace this week.
________________________________________________________________________
Other news: My friend and I are having a HUGE garage sale at my house this coming Friday (July 31) 9-5 and Saturday (Aug 1) 9-2. We are calling it the EVERYTHING BABY AND MORE SALE. Specifically we have complete wardrobes of boys clothes in sizes NB-18 months. We have beautiful baby girl's clothes in sizes 3-6 and 6-9. Included are many, like-new dress outfits (think Christmas and Easter dresses, adorable 3 piece boy dress outfits). We also have winter coats, snowsuits, boots. Other items: Cradle Swing, boy and girl bouncy seats, a really old, but still usable triple jogger, baby/toddler toys, highchair, excersaucers. Also A TON of great household items and some small furniture. If you don't know where I live, please email me mwilliams91@rochester.rr.com. This is a great sale for someone expecting, with a new baby, or for grandparents!!
Saturday, July 25, 2009
Michael's Rainbow
Tonight we went to the awareness ceremony during the Michael Napoleone Memorial Foundation youth baseball tournament. I was asked to share a little bit about Brady's story and how this wonderful foundation helped our family. I'm so honored to speak on behalf of all families dealing with cancer.
The weather this afternoon and evening was SO wild here! As we loaded the family in the van, the thunder and lighting started. Then as we drove to the event, the pouring rain started with a strange wind. Come to find out a tornado touched down in our county (very usual for our area). When we got to the stadium, the rain had stopped. About 30 minutes later, the skies opened up again and it poured. The ceremony started, the rain held off. As the ceremony ended, the thunder started again, and it rained, AGAIN!
As we were driving home, the most beautiful rainbow was in the sky. At one point we could see it stretching all the way across the stormy sky!!! I like to think it was Michael's rainbow...
The weather this afternoon and evening was SO wild here! As we loaded the family in the van, the thunder and lighting started. Then as we drove to the event, the pouring rain started with a strange wind. Come to find out a tornado touched down in our county (very usual for our area). When we got to the stadium, the rain had stopped. About 30 minutes later, the skies opened up again and it poured. The ceremony started, the rain held off. As the ceremony ended, the thunder started again, and it rained, AGAIN!
As we were driving home, the most beautiful rainbow was in the sky. At one point we could see it stretching all the way across the stormy sky!!! I like to think it was Michael's rainbow...
Friday, July 24, 2009
Hooray for Cousins!
I'm beginning to think I packed the summer schedule a little too tight! Baseball Tournament tomorrow, church picnic Sunday, PT Tuesday, Playgroup Wednesday, Scans Thursday, Garage Sale Friday/Saturday...then we have two weeks until Brady Bash! What do you do when you are feeling a little stressed? Call grandma and the cousins over for dinner!
Of course we ordered Santinos and then went on a walk for icecream and a trip to our favorite park. Cousin Aubrey is 5 months older than the triplets, and Natalie is 4 months older than Allie. I LOVE seeing all 6 of them together. We put Allie in the choo choo with the triplets (Matt added the 4th car) and we put the "babies" in the double stroller. Too cute!
Look cousin Aubrey! A bug!
The girls!
Of course we ordered Santinos and then went on a walk for icecream and a trip to our favorite park. Cousin Aubrey is 5 months older than the triplets, and Natalie is 4 months older than Allie. I LOVE seeing all 6 of them together. We put Allie in the choo choo with the triplets (Matt added the 4th car) and we put the "babies" in the double stroller. Too cute!
Look cousin Aubrey! A bug!
The girls!
Thursday, July 23, 2009
Moving On...
I got a lot of answers today as to why things haven't been moving along with Brady's scans...
The answer???
My doctor never ordered them! I struggle with whether or not I should put some things on the blog related to our dissatisfaction with our experiences, but I think if I am always honest, then perhaps our story will help someone else. I found all of this out by calling the MRI department for the 3rd day in a row. My wonderful nurse friend there and I have been playing phone tag. She finally got a hold of me and told me that they haven't been able to schedule Brady because they haven't received an order from the doctor. I emailed the doctor on July 16th, and she replied that she was putting in the order the next day. Thank goodness I saved all of the emails...
I was SO outraged by this, and so many other times that we have seemingly been forgotten, that I composed myself and called the oncology department. I told them what had happened, that I had emails documenting everything, and that this is not the first time our doctor has failed to communicate with us. I explained that I could no longer trust our doctor to do what she says she will, and that I am completely uncomfortable putting Brady's care in her hands. I then asked for a different doctor. I felt a little uneasy since I hadn't spoken to Matt about any of this, but I knew he would agree 100% (and they should be glad it wasn't him calling!!) A got a call back from a NP about 30 minutes later who wanted to know the whole story. I told her about this incident, about our doctor not remembering that she had met with us regarding Brady's post-op scans, and how no one called me back 3 weeks ago when I was concerned about his belly. She asked me to forward her the emails that I had, so I did.
An hour or so later, the secretary called me with a date of July 30th for scans, and an appointment August 5th with a new doctor. I'm sad that we are starting over with a new doctor (seems to be a trend in our lives lately). However, I will never, ever apologize for expecting Brady's doctor to communicate with us and treat him as though he matters. So, one week from today we go to Strong for MRIs of Brady spine and abdomen, as well as blood/urine tests. Then we have to wait until the next week to meet with the new doctor (who by the way we liked very much when we met him right after Brady's diagnosis). I also reiterated to the NP our requests regarding anesthesia. I'm not sure what will happen on that, I have a feeling we will be hashing it out with the anesthesiologists that day.
In other "Brady News": Brady had a GREAT day at PT today. He was a willing and energetic participant in all activities! I was very proud of him!
This Saturday at Dwyer Stadium (where the Muckdogs play) the Michael Napoleone Memorial Foundation will be holding a Youth Baseball Tournament. It actually runs from Friday-Sunday. On Saturday you can come to the stadium throughout the day and enjoy free baseball, raffles, food, and free crafts for kids! There is an awareness ceremony at 6pm on the field. I will be speaking and singing (please be praying for me!). Come out and support a great cause!!!
The answer???
My doctor never ordered them! I struggle with whether or not I should put some things on the blog related to our dissatisfaction with our experiences, but I think if I am always honest, then perhaps our story will help someone else. I found all of this out by calling the MRI department for the 3rd day in a row. My wonderful nurse friend there and I have been playing phone tag. She finally got a hold of me and told me that they haven't been able to schedule Brady because they haven't received an order from the doctor. I emailed the doctor on July 16th, and she replied that she was putting in the order the next day. Thank goodness I saved all of the emails...
I was SO outraged by this, and so many other times that we have seemingly been forgotten, that I composed myself and called the oncology department. I told them what had happened, that I had emails documenting everything, and that this is not the first time our doctor has failed to communicate with us. I explained that I could no longer trust our doctor to do what she says she will, and that I am completely uncomfortable putting Brady's care in her hands. I then asked for a different doctor. I felt a little uneasy since I hadn't spoken to Matt about any of this, but I knew he would agree 100% (and they should be glad it wasn't him calling!!) A got a call back from a NP about 30 minutes later who wanted to know the whole story. I told her about this incident, about our doctor not remembering that she had met with us regarding Brady's post-op scans, and how no one called me back 3 weeks ago when I was concerned about his belly. She asked me to forward her the emails that I had, so I did.
An hour or so later, the secretary called me with a date of July 30th for scans, and an appointment August 5th with a new doctor. I'm sad that we are starting over with a new doctor (seems to be a trend in our lives lately). However, I will never, ever apologize for expecting Brady's doctor to communicate with us and treat him as though he matters. So, one week from today we go to Strong for MRIs of Brady spine and abdomen, as well as blood/urine tests. Then we have to wait until the next week to meet with the new doctor (who by the way we liked very much when we met him right after Brady's diagnosis). I also reiterated to the NP our requests regarding anesthesia. I'm not sure what will happen on that, I have a feeling we will be hashing it out with the anesthesiologists that day.
In other "Brady News": Brady had a GREAT day at PT today. He was a willing and energetic participant in all activities! I was very proud of him!
This Saturday at Dwyer Stadium (where the Muckdogs play) the Michael Napoleone Memorial Foundation will be holding a Youth Baseball Tournament. It actually runs from Friday-Sunday. On Saturday you can come to the stadium throughout the day and enjoy free baseball, raffles, food, and free crafts for kids! There is an awareness ceremony at 6pm on the field. I will be speaking and singing (please be praying for me!). Come out and support a great cause!!!
Wednesday, July 22, 2009
A Laugh a Minute
Two year olds...they are hilarious! Amidst the whining and fighting, they say the most amazingly funny things! A few quotes heard in our house lately:
Eli: "Daddy's a guy. Mommy's a lady. Eli's a....a kid!"
Cara: Mommy says,"Cara, let's go do your hair." Cara says,"Ok, let's!"
Brady: As I come down the stairs tonight in a dress (I was going to Calling Hours for my Aunt's sister), "Oooo, mommy go to the grocery store. BUY DONUTS!" Apparently if I am not in my typical mommy clothes, then of course I must be going to the grocery store!
Then there are the sweet things that two year olds say. I love that they are picking up on manners and being so loving.
Eli: As he puckers up for a kiss, "Lots of kisses today mommy!"
Eli: Every night during dinner he says, "Good dinner mommy!"
Cara: "I love you mommy. Mommy pretty!" She says that even when I'm in pjs!
Brady: "MOMMY, open the door please mommy!"
________________________________________________________________________
I called Strong again today and left a message in the CT department. They called back while I was at an appointment this afternoon! I'm so frustrated yet again that we are hunting down an appointment. The message on my machine says,"Mrs. Williams I have information for you, but not an answer. Please call me back." I'm already annoyed! I think it is time for very-stern-on-the-verge-of-rude Mrs. Williams to get on the phone tomorrow. Why must things be so difficult. He needs an appointment, make it already!!!
Please keep sweet Brady in your prayers! We are off to PT tomorrow. He has come so far, but still needs to overcome quite a few skill deficits. We are working very hard on conquering stairs, strength, balance, and more age appropriate skills. The PT and I have been discussing how it is difficult to know what he will be able to overcome and what may be permanent damage. With the type of spinal cord "injury" that he had, only time will tell! We are over the moon that he is walking, but I guess we need to really focus on getting him even better at it! Go Brady!!!
Eli: "Daddy's a guy. Mommy's a lady. Eli's a....a kid!"
Cara: Mommy says,"Cara, let's go do your hair." Cara says,"Ok, let's!"
Brady: As I come down the stairs tonight in a dress (I was going to Calling Hours for my Aunt's sister), "Oooo, mommy go to the grocery store. BUY DONUTS!" Apparently if I am not in my typical mommy clothes, then of course I must be going to the grocery store!
Then there are the sweet things that two year olds say. I love that they are picking up on manners and being so loving.
Eli: As he puckers up for a kiss, "Lots of kisses today mommy!"
Eli: Every night during dinner he says, "Good dinner mommy!"
Cara: "I love you mommy. Mommy pretty!" She says that even when I'm in pjs!
Brady: "MOMMY, open the door please mommy!"
________________________________________________________________________
I called Strong again today and left a message in the CT department. They called back while I was at an appointment this afternoon! I'm so frustrated yet again that we are hunting down an appointment. The message on my machine says,"Mrs. Williams I have information for you, but not an answer. Please call me back." I'm already annoyed! I think it is time for very-stern-on-the-verge-of-rude Mrs. Williams to get on the phone tomorrow. Why must things be so difficult. He needs an appointment, make it already!!!
Please keep sweet Brady in your prayers! We are off to PT tomorrow. He has come so far, but still needs to overcome quite a few skill deficits. We are working very hard on conquering stairs, strength, balance, and more age appropriate skills. The PT and I have been discussing how it is difficult to know what he will be able to overcome and what may be permanent damage. With the type of spinal cord "injury" that he had, only time will tell! We are over the moon that he is walking, but I guess we need to really focus on getting him even better at it! Go Brady!!!
Tuesday, July 21, 2009
Allie is Such a Big Girl
Why didn't someone warn me how hard it would be to see my last "baby" grow up so fast? I feel like I'm savoring every moment as much as I can with Allie, but I can feel her "babyness" slipping through my fingers every day. She is truly a fabulous, sweet girl. I worry that she may be completely spoiled in our family! Allie will be 9 months old at the beginning of August. She was just 2 1/2 months old when Brady was diagnosed so it seems her whole life has been consumed by the memories of cancer. God certainly knew what he was doing when he plopped her into our life amidst these tough times. She is a daily sunbeam in our world...
Allie taking a bath like a big girl in the sink. She is admiring her frog prince!
____________________________________________________________________
Other news from the day:
No word from Strong today about a scan date. I called yesterday and today to speak with my nurse friends who work in pediatric radiology. I'm expecting them to return my call tomorrow, I hope!
I was interviewed on the phone today by Reader's Digest. They are doing a story about the Dolly Parton Imagination Library Program that a local family in our area sponsors for all kids who live in our town. I'll let you know if they use any of my comments in an upcoming issue!
A brief article I wrote for the Make a Difference To One blog was published today. You can click here and scroll down to read it!
Allie taking a bath like a big girl in the sink. She is admiring her frog prince!
____________________________________________________________________
Other news from the day:
No word from Strong today about a scan date. I called yesterday and today to speak with my nurse friends who work in pediatric radiology. I'm expecting them to return my call tomorrow, I hope!
I was interviewed on the phone today by Reader's Digest. They are doing a story about the Dolly Parton Imagination Library Program that a local family in our area sponsors for all kids who live in our town. I'll let you know if they use any of my comments in an upcoming issue!
A brief article I wrote for the Make a Difference To One blog was published today. You can click here and scroll down to read it!
Monday, July 20, 2009
6 Months Ago
Tomorrow is July 21 and 6 months ago on January 21 our whole world changed. It was 6 months ago tomorrow that our son Brady was diagnosed with cancer. Many of you have been following our story since about that time, and to you it may seem like yesterday. To us it seems like years ago, almost like we have lived a lifetime since then. To think of all that happened just in that first 24 hours, that first week...it boggles my mind. And to think of how dark those days were makes me tremble as I remember the agony.
Here are my words from the first day after diagnosis:
I know many of you want information, so we are going to try and continue updating via this blog as best we can. Our world has come crashing down and we desperately need the prayers of our friends and family. I'm having a hard time putting thoughts together, so I will just list the events of yesterday and today so far;
1.Came in for an MRI--unexpectedly they found a mass on Brady's spine.
2. Within a few hours we were told that Brady would be having spinal surgery to relieve pressure caused by the tumor on the spinal cord.
3. Later we found out the tumor was much larger than earlier thought...what we know is that it is cancer, it is big, it is in his chest.
4. The surgery was from 7-9:30pm. They removed some of the tumor and that part was successful in that his spine was somewhat decompressed. A lot of tumor remains. What was removed will be tested to diagnose the specific kind of cancer.
5. Brady is intubated and being kept somewhat sedated until further notice.
6. A risk of surgery was loss of function in one or all of his limbs. So far, his movement in all limbs looks good..Praise God.
7. At 9am this morning they did a bone marrow extraction to test if the cancer is in his bone marrow. This will be followed up by a CAT scan to look for other areas of cancer in his body. 8. We expect to hear more about the chemotherapy process, learn what type of cancer/prognosis, and possibly another surgery to place a central line today.
We need our friends and family right now. Please please pray for Brady. Please pray for our family as we continue to try and decide what is best to do in regards to having a memorial for my grandma. Please pray for Matt and I to find the courage to face all of this.
But in six months God has taken my boy, the one who doctors told us had Cerebral Palsy and wouldn't ever run like his peers, the one who then doctors told us had the most deadly form of pediatric cancer, the one who had two life threatening surgeries that could have paralyzed him...
God took this boy and he made him whole again. He took Brady who could only crawl, and he gave him steady feet and legs and made him WALK!! We have no choice but to believe that Brady will someday celebrate a complete victory over cancer!!!
The words from Psalm 40 seem to have been written just for Brady:
Psalm 40
1 I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
2 He lifted me out of the pit of despair, out of the mud and the mire.
He set my feet on solid ground and steadied me as I walked along.
3 He has given me a new song to sing, a hymn of praise to our God.
Many will see what he has done and be amazed. They will put their trust in the Lord.
No matter how deep the pit we find ourselves in, God can pull us out! We pray that Brady's life we always be a testimony to what our God can do!
Here are my words from the first day after diagnosis:
I know many of you want information, so we are going to try and continue updating via this blog as best we can. Our world has come crashing down and we desperately need the prayers of our friends and family. I'm having a hard time putting thoughts together, so I will just list the events of yesterday and today so far;
1.Came in for an MRI--unexpectedly they found a mass on Brady's spine.
2. Within a few hours we were told that Brady would be having spinal surgery to relieve pressure caused by the tumor on the spinal cord.
3. Later we found out the tumor was much larger than earlier thought...what we know is that it is cancer, it is big, it is in his chest.
4. The surgery was from 7-9:30pm. They removed some of the tumor and that part was successful in that his spine was somewhat decompressed. A lot of tumor remains. What was removed will be tested to diagnose the specific kind of cancer.
5. Brady is intubated and being kept somewhat sedated until further notice.
6. A risk of surgery was loss of function in one or all of his limbs. So far, his movement in all limbs looks good..Praise God.
7. At 9am this morning they did a bone marrow extraction to test if the cancer is in his bone marrow. This will be followed up by a CAT scan to look for other areas of cancer in his body. 8. We expect to hear more about the chemotherapy process, learn what type of cancer/prognosis, and possibly another surgery to place a central line today.
We need our friends and family right now. Please please pray for Brady. Please pray for our family as we continue to try and decide what is best to do in regards to having a memorial for my grandma. Please pray for Matt and I to find the courage to face all of this.
But in six months God has taken my boy, the one who doctors told us had Cerebral Palsy and wouldn't ever run like his peers, the one who then doctors told us had the most deadly form of pediatric cancer, the one who had two life threatening surgeries that could have paralyzed him...
God took this boy and he made him whole again. He took Brady who could only crawl, and he gave him steady feet and legs and made him WALK!! We have no choice but to believe that Brady will someday celebrate a complete victory over cancer!!!
The words from Psalm 40 seem to have been written just for Brady:
Psalm 40
1 I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
2 He lifted me out of the pit of despair, out of the mud and the mire.
He set my feet on solid ground and steadied me as I walked along.
3 He has given me a new song to sing, a hymn of praise to our God.
Many will see what he has done and be amazed. They will put their trust in the Lord.
No matter how deep the pit we find ourselves in, God can pull us out! We pray that Brady's life we always be a testimony to what our God can do!
Saturday, July 18, 2009
Triplets, Triplets Everywhere!
Today the family traveled to the annual Rochester Area Triplet Group Picnic! We have a dinner group of triplet moms that meet once a month for dinner. I have been going for about two years now and love getting to know other moms in the same crazy boat that I'm in! So many of these moms have been wonderful to our family during Brady's illness...truly they all are wonderful people! Today 8 families of triplets met to enjoy some fun. As one of the other moms said, "It's great to be among so many families with triplets, we don't stick out so much!"
Here are some great pictures:
All 8 sets of triplets and their siblings. Our crew is on the right side...you'll notice Cara's head tilt!
The bounce house was there. This is the one that will also be appearing at Brady Bash 2009! Woo hoo!
Pretty girl...
Cutie pie Eli!
Daddy and Brady in the bouncehouse. Brady was a little too intimidated to jump!
We commented all day how much more fun we had this year compared to last year. Brady was crawling in the grass last year...this year he played just like all the other kids!
Oh yes, and one more change since last year....
Allie!!! She was crawling off the blanket going after scraps of food!!!
Friday, July 17, 2009
The Potty Blog
I certainly don't want this to turn into the "potty blog" but I have to say that amazing things are happening on that potty! Today's score:
Cara: 2 pees, 2 poops
Brady: 1 pee
Eli: 0 pees, 0 poops, 1 snack eaten very slowly while sitting on the potty
I'm not trying to train them at all. They are asking, so I put them on. Cara seems to be able to go on demand. All are still going in their diapers as well. I think it is just a fad with the boys, but I'm wondering if Cara is ready for it. I can tell you that one of the funniest things I have ever experienced is watching three two year olds watching each other go the potty. The commentary is hilarious!!!
No word from Strong about a scan date. I had this sinking feeling today...you know, the what if feeling. While checking out party supplies for the Brady Bash I started asking myself, "What if the scans show something, and we have this big celebration planned...what then?" Those feelings bugged me, nagged at me, all while I was out. On my way home I stopped at Benders and found a book I'd been looking for. It is the follow up book to "When God and Cancer Meet" by Lynn Eib. This book is called "Finding the Light in Cancer's Shadow." The first book is more people dealing with a cancer diagnosis and treatment, and the second is for people done with their treatment. I've only read a few pages, but she likens surviving cancer with driving on black ice. You had completely lost control, not knowing if you would ever stop, but you did. Now you have to keep driving, but you are scared out of your mind that you will loose control and hit the black ice again. That is EXACTLY what I feel like! I haven't gotten to the good stuff yet, the "how to" handle all of these feelings chapters, but when I do, I'll share! I'm just so relieved to read a book by a Christian who acknowledges that the "after" of cancer can be just as terrifying as the going through it stage.
We will be here August 15th...we are celebrating Brady...come what may!
Cara: 2 pees, 2 poops
Brady: 1 pee
Eli: 0 pees, 0 poops, 1 snack eaten very slowly while sitting on the potty
I'm not trying to train them at all. They are asking, so I put them on. Cara seems to be able to go on demand. All are still going in their diapers as well. I think it is just a fad with the boys, but I'm wondering if Cara is ready for it. I can tell you that one of the funniest things I have ever experienced is watching three two year olds watching each other go the potty. The commentary is hilarious!!!
No word from Strong about a scan date. I had this sinking feeling today...you know, the what if feeling. While checking out party supplies for the Brady Bash I started asking myself, "What if the scans show something, and we have this big celebration planned...what then?" Those feelings bugged me, nagged at me, all while I was out. On my way home I stopped at Benders and found a book I'd been looking for. It is the follow up book to "When God and Cancer Meet" by Lynn Eib. This book is called "Finding the Light in Cancer's Shadow." The first book is more people dealing with a cancer diagnosis and treatment, and the second is for people done with their treatment. I've only read a few pages, but she likens surviving cancer with driving on black ice. You had completely lost control, not knowing if you would ever stop, but you did. Now you have to keep driving, but you are scared out of your mind that you will loose control and hit the black ice again. That is EXACTLY what I feel like! I haven't gotten to the good stuff yet, the "how to" handle all of these feelings chapters, but when I do, I'll share! I'm just so relieved to read a book by a Christian who acknowledges that the "after" of cancer can be just as terrifying as the going through it stage.
We will be here August 15th...we are celebrating Brady...come what may!
Thursday, July 16, 2009
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.
Wednesday, July 15, 2009
Growing Up Too Fast
I guess this is the week my kids all decided to grow up! First we got rid of the binkies...Now, Allie decided it is time to crawl!!! Then today Cara went pee pee on the potty!!! I had thoroughly decided to put off potty training until the winter, but I bought a potty just to bring some awareness of how the whole thing works. She asked to sit on it today, and a few minutes later, tinkle tinkle! And my little Allie, she has been scooting and rolling around for weeks, but last night started using her arms and legs together! All of these things and the fact that I'm cleaning out all of the baby stuff for a garage sale I'm having are making me very sad for the "baby days" long gone. Don't get me wrong, I wouldn't go back to the days of infant triplets, but it is heart wrenching to see your kids leaving the baby stage behind for good. Don't even get me started about having to get rid of my maternity clothes...sniffle, sniffle!
No news from Strong today. Brady was certainly in better spirits today. We go to a playgroup on Wednesday mornings and he toddles around the big playground just like every other kid. Sure he is a little slower on the steps, and sure he looks for mommy at the bottom of the slide, but he IS THERE!! As I say about many moments these days, I think I'm the proudest mommy at the playground!
I wanted to share a list of items that the Ronald Mc Donald House in Rochester is in need of. We will have a collection box at the Brady Bash. If you would like to donate, we would appreciate it so much!!! Here is the list of what is needed:
Individual sized cereals
Individual sized snack foods
Granola Bars, Breakfast Bars, Pop Tarts
Individual Sized juices
Individual microwave meals
Coffee Creamer & Sugar
Canned pasta: Spaghetti O’s, Ravioli
Tuna
Chunky soups & stews
Mayonnaise
Individual sized snack foods
Granola Bars, Breakfast Bars, Pop Tarts
Individual Sized juices
Individual microwave meals
Coffee Creamer & Sugar
Canned pasta: Spaghetti O’s, Ravioli
Tuna
Chunky soups & stews
Mayonnaise
Basically anything nonperishable that can be eaten easily and quickly is needed. One idea Matt and I had was to donate travel coffee mugs. We are huge coffee drinkers and would always bring coffee down in the morning while staying at the RMH to whichever one of us stayed in the room with Brady. Those little Styrofoam cups were never enough:)
Thank you all for your continued prayers and support! We love our friends and family:)
Tuesday, July 14, 2009
We Have Contact!!
I received a reply from our oncologist at Strong today! She seems willing to help us get scans done here in late July or early August. She did not respond to our specific request regarding anesthesia, perhaps we will have to deal with that on the day of the scans. I was a little disturbed that she asked me if Brady had scans done after his April surgery!!?! Uh...yes...he did...at Strong...and we met with YOU to discuss the results. See what I mean? Brady is like the invisible patient!!! Anyway, it seems as though we are moving in the right direction for the time being.
Brady and I went to PT today. When we got there he was not cooperative and did not want to interact with Linda very much. Perhaps the few weeks off of PT made him not very comfortable. Truthfully, he acted much like he has been at home. He is rather clingy, whiny, and moody. Other times he is his silly self. Normal toddler stuff, or is he trying to tell me something. I HATE wondering and worrying as I try and analyze his behavior. Scans couldn't come soon enough.
Brady and I went to PT today. When we got there he was not cooperative and did not want to interact with Linda very much. Perhaps the few weeks off of PT made him not very comfortable. Truthfully, he acted much like he has been at home. He is rather clingy, whiny, and moody. Other times he is his silly self. Normal toddler stuff, or is he trying to tell me something. I HATE wondering and worrying as I try and analyze his behavior. Scans couldn't come soon enough.
Monday, July 13, 2009
Bye Bye Binkies
So we did it. Matt and I (well Matt did it really) decided that Friday was the day that our two "binky lovin two year olds" should kick the habit and grow up! Eli and Cara have had binkies since forever, but only ever use them in their cribs. Brady doesn't use one, but he certainly loves to bite his blankie! I never really cared much because it kept the noise level down at nighttime. We always said that when they turned two those things would be gone. Unfortunately their second birthday coincided with Brady's surgery time and we were gone quite a bit and things were so chaotic. I didn't want to change things for them during such an unsettled time, so the binkies remained. All of a sudden Friday night Matt got out the scissors and just cut the ends off! I truly was heartbroken inside, but knew my husband had just bravely done what I never would have had the courage to do (I'm sounding kind of dramatic, huh?)
The best part of Matt's plan was that he quickly claimed the baby at bedtime leaving me to put Eli, Cara, and Brady to bed...BINKY-LESS! I mustered up all of my creativity and started telling them this ridiculous story about the binky fairy while I brushed their teeth. I told them that now that they are two, the binky fairy came to our house and cut their binkies because they are big kids now. And if they go to sleep all night without their binkies, the binky fairy would leave them a present. They listened with wide-eyes and thought the story was so funny! I recommend these types of stories to parents like me, who in no way want to take responsibility for doing something like this to their children!
Then...I put them in their cribs......
Eli instantly started searching for that binky like a crazy man! He found it, put the stubby little thing to his mouth, and it fell down. He picked it up and realized it had been "broken"..."Mommy fix it?" Cara did the same thing and replied in the same way. I kept reassuring them that they are big kids now, and that they still have all their "friends" (meaning 3 baby dolls, a Care Bear, a Snuffleupagus, a little Snuffy, a Mickey Mouse, a Minnie Mouse, and of course Dog) to snuggle with in their beds. I reminded them of their presents in the morning, all while hoping that I could scrape up 3 "presents" that would appeal to them after they went to bed!
The crying started at 8pm and lasted 3/4 of the way through Paul Blart, Mall Cop. Matt and I decided we would wait it out while watching a movie. They finally fell asleep, and to their surprise in the morning they each got a surprise. Luckily I found a helicopter I had gotten for $1 at a garage sale last week, an unopened ABC puzzle, and a bridge for our train table that I had taken away from them 6 months ago all in my basement. They were thrilled!!!
They are getting better each time they go to sleep. Mommy is sad...and proud!!!
On a more serious note, I emailed the oncologist at Strong today and am waiting to hear back. We have asked that the scans be done here, as well as blood work and urine testing. We also asked that they follow the procedures that Sloan was going to use (MRI only, no intubation, and propofol for anesthesia). We will be sending the scans to Sloan for review each time as well. I'm praying that we hear back quickly from them. I need some positive feedback that we have made the right choice!
Please remember to email me at mwilliams91@rochester.rr.com to RSVP for the Brady Bash
August 15 at 4pm, our house! We have 75 people coming already and couldn't be more excited!
The best part of Matt's plan was that he quickly claimed the baby at bedtime leaving me to put Eli, Cara, and Brady to bed...BINKY-LESS! I mustered up all of my creativity and started telling them this ridiculous story about the binky fairy while I brushed their teeth. I told them that now that they are two, the binky fairy came to our house and cut their binkies because they are big kids now. And if they go to sleep all night without their binkies, the binky fairy would leave them a present. They listened with wide-eyes and thought the story was so funny! I recommend these types of stories to parents like me, who in no way want to take responsibility for doing something like this to their children!
Then...I put them in their cribs......
Eli instantly started searching for that binky like a crazy man! He found it, put the stubby little thing to his mouth, and it fell down. He picked it up and realized it had been "broken"..."Mommy fix it?" Cara did the same thing and replied in the same way. I kept reassuring them that they are big kids now, and that they still have all their "friends" (meaning 3 baby dolls, a Care Bear, a Snuffleupagus, a little Snuffy, a Mickey Mouse, a Minnie Mouse, and of course Dog) to snuggle with in their beds. I reminded them of their presents in the morning, all while hoping that I could scrape up 3 "presents" that would appeal to them after they went to bed!
The crying started at 8pm and lasted 3/4 of the way through Paul Blart, Mall Cop. Matt and I decided we would wait it out while watching a movie. They finally fell asleep, and to their surprise in the morning they each got a surprise. Luckily I found a helicopter I had gotten for $1 at a garage sale last week, an unopened ABC puzzle, and a bridge for our train table that I had taken away from them 6 months ago all in my basement. They were thrilled!!!
They are getting better each time they go to sleep. Mommy is sad...and proud!!!
On a more serious note, I emailed the oncologist at Strong today and am waiting to hear back. We have asked that the scans be done here, as well as blood work and urine testing. We also asked that they follow the procedures that Sloan was going to use (MRI only, no intubation, and propofol for anesthesia). We will be sending the scans to Sloan for review each time as well. I'm praying that we hear back quickly from them. I need some positive feedback that we have made the right choice!
Please remember to email me at mwilliams91@rochester.rr.com to RSVP for the Brady Bash
August 15 at 4pm, our house! We have 75 people coming already and couldn't be more excited!
Sunday, July 12, 2009
Ex-Haus-Ted!
Summer + 3 toddlers + 1 baby + lots of fun= tired! We just got home, tucked our four little ones in bed, and are trying to wrap up this weekend. Of course that means unpacking bags, doing a few loads of laundry, taking out garbage...These summer weekends are proving to be a lot of fun. What a difference a year makes. Last year Brady wasn't walking, so every outing became quite difficult. He had to be carried everywhere, or we had to allow him to crawl around. I was pregnant and not always a lot of help. This year we are all mobile and have a very easy-tempered baby tagging along on all of our adventures. Not that it is easy (trust me, it's NOT) but once we get where we are going, we find that we have a great time!
Today we went to church, had a quick lunch at church, then got back in the car and drove 1 1/2 hours to visit Grandma and Grandpa at their lake cottage. The kids just loved walking near the water and throwing stones, and sand! We had a nice dinner outside and more time for play. Last year the kids didn't nearly as dirty at the lake. This year, a different story. They were covered head to toe with sand. Matt stuck them each in the shower and then we put their pjs on. Then we were on the road home. Sorry no pictures tonight...I didn't bring my camera:(
Matt and I have been discussing our game plan for Brady all weekend. We are actually changing our plan a bit. We are going to contact Strong and get his scans, blood work, and urine testing scheduled for there later this month. We are going to insist on the anesthesia medication that we are comfortable with and only using the MRI instead of both CT and MRI to reduce Brady's exposure to radiation. From there, we will send the scans and reports to Sloan for their review. If anything seems out of the ordinary we will defer to Sloan for a treatment plan. Right now we are praying for peace with this plan and that our doctor here will understand our need to step up communication and have someone in charge of things.
As always, we appreciate your prayers for our family. Life is so complicated right now. We are enjoying our wonderful family and all the fun that this age brings. However, since cancer entered our lives, there is always this dark cloud hanging around threatening our security. Please pray that we would not doubt God's hand at work in our lives for even a second!
Today we went to church, had a quick lunch at church, then got back in the car and drove 1 1/2 hours to visit Grandma and Grandpa at their lake cottage. The kids just loved walking near the water and throwing stones, and sand! We had a nice dinner outside and more time for play. Last year the kids didn't nearly as dirty at the lake. This year, a different story. They were covered head to toe with sand. Matt stuck them each in the shower and then we put their pjs on. Then we were on the road home. Sorry no pictures tonight...I didn't bring my camera:(
Matt and I have been discussing our game plan for Brady all weekend. We are actually changing our plan a bit. We are going to contact Strong and get his scans, blood work, and urine testing scheduled for there later this month. We are going to insist on the anesthesia medication that we are comfortable with and only using the MRI instead of both CT and MRI to reduce Brady's exposure to radiation. From there, we will send the scans and reports to Sloan for their review. If anything seems out of the ordinary we will defer to Sloan for a treatment plan. Right now we are praying for peace with this plan and that our doctor here will understand our need to step up communication and have someone in charge of things.
As always, we appreciate your prayers for our family. Life is so complicated right now. We are enjoying our wonderful family and all the fun that this age brings. However, since cancer entered our lives, there is always this dark cloud hanging around threatening our security. Please pray that we would not doubt God's hand at work in our lives for even a second!
Friday, July 10, 2009
Summer is for...
Happy Weekend Everyone!
Summer is for smiles
Summer is for ice cream!
Hey brother, can I have a scoop?
Summer is for walks to the park
Summer is for exploring...
and conquering new things!
Summer is for smiles
Summer is for ice cream!
Hey brother, can I have a scoop?
Summer is for walks to the park
Summer is for exploring...
and conquering new things!
This summer is for thinking about how far we've come
and looking ahead to many summers we'll share...
and looking ahead to many summers we'll share...
Thursday, July 9, 2009
Feeling Confused
Matt and I are still trying to sort through what this next phase of Brady's care is going to look like. In all honesty, we feel WAY out in left field, all by ourselves, calling all the shots. By going to Sloan we in turn seemed to have almost cut ties with Strong. I know I have used this expression before, but Brady isn't on any one's "To Do" list. It is up to us to ask for blood work, urine analysis, scan dates, and I have to say I'm started to crack a little under this pressure. So we thought we had made a clear decision to just go to Sloan for the scans. However, in just dealing with the scheduling process, I feel all the old familiar frustrations of being a little fish in a big pond. For example, we still don't have a doctor there who we deal with. We have very briefly met with 3 of their oncologists during our 3 trips there, all of whom learned about Brady upon walking into the office to meet with us. We don't have "a doctor" to call when we have a concern. For example, I had to call the surgeon's office to ask how to get scans scheduled. They gave me the number of the oncologist's office that I said I had liked the best. A different oncologist's office called me two days later with scan dates. If we do go there we will just have the scans done, then come home. We will have to initiate a meeting with "a doctor" if we want one, and if you remember there are no real appointments, you just kind of go and wait. So how does this play out if we are having to go down there every 3-6 months for the next 5 years? Who is our go-to person? When/where is Brady having his blood/urine tested? We are toiling over these questions and are frustrated that we have been sort of left in the dark to make these decisions. Please be praying that we will have a clear cut plan of action soon...My opinion is that we have enough to worry about just living with a child with cancer, we need a doctor to coordinate his care. We don't want that job anymore!
I forgot to give an update on Cara's appointment yesterday! I really liked the new eye doctor. He is noticing some irregular movement with her right eye, however, she did not do the head tilt that we see at home. It is hard to recreate the situations where we see it when she is in a small exam room. She only tilts her head when looking at things in the distance, further than about 10 feet. He feels that what I am describing and what he saw sound like a 4th nerve palsy in that eye, basically a weakening of her eye muscle. There is a quick surgical procedure to correct this, but he needs to see her again at least once to really pin down the problem. Although we have been dealing with this for 1 1/2 years now, I'm glad I found a doctor that is listening and willing to do something about it. We go back in September.
Allie had her appointment with the dermatologist today regarding the spot on her leg. The doctor said it is a Juvenile Xanthogranuloma (technical, I know, but I like to have it written down somewhere!) Basically it is just a small, bumpy, orangey-brown spot on the back of her thigh. It may grow, it may go away, but it isn't likely dangerous. He gave us the option of leaving it or removing it. Hey---if this mom is given the option of easily removing something from her kids body--that is a no-brainer! We are going to have it taken off, it will be an office procedure with a numbing needle-stick and then a few stitches. Poor Allie, but in the scheme of life in the past year, seems easy!
RSVP's for the Brady Bash are rolling in! Hooray! Can't wait to celebrate!
I forgot to give an update on Cara's appointment yesterday! I really liked the new eye doctor. He is noticing some irregular movement with her right eye, however, she did not do the head tilt that we see at home. It is hard to recreate the situations where we see it when she is in a small exam room. She only tilts her head when looking at things in the distance, further than about 10 feet. He feels that what I am describing and what he saw sound like a 4th nerve palsy in that eye, basically a weakening of her eye muscle. There is a quick surgical procedure to correct this, but he needs to see her again at least once to really pin down the problem. Although we have been dealing with this for 1 1/2 years now, I'm glad I found a doctor that is listening and willing to do something about it. We go back in September.
Allie had her appointment with the dermatologist today regarding the spot on her leg. The doctor said it is a Juvenile Xanthogranuloma (technical, I know, but I like to have it written down somewhere!) Basically it is just a small, bumpy, orangey-brown spot on the back of her thigh. It may grow, it may go away, but it isn't likely dangerous. He gave us the option of leaving it or removing it. Hey---if this mom is given the option of easily removing something from her kids body--that is a no-brainer! We are going to have it taken off, it will be an office procedure with a numbing needle-stick and then a few stitches. Poor Allie, but in the scheme of life in the past year, seems easy!
RSVP's for the Brady Bash are rolling in! Hooray! Can't wait to celebrate!
Wednesday, July 8, 2009
Can I Be Picky?
So I got a random voice mail on my cell phone from Sloan today. They have never called my cell before, so it was strange. The message told us that Brady's scans have been scheduled for August 10th and 11th. Wow! Unfortunately, we just can't do those dates. I feel slightly bad for being so picky, but hey, this is summer and we have plans! My sister and her family will be here that week and we only see them twice a year. That week is just not an option. I called them back and thanked them for their timeliness, but asked them to please reschedule us for either of the next two weeks in August. They need to coordinate with anesthesia and MRI again, so they will get back to me. I guess I figured I would be in on the discussion regarding when the scans were, but they probably don't have a lot of parents telling them no! Either way we will be squeezing in our trip sometime after the Brady Bash and before our Lemonade Stand!
All 6 of us took a fantastic walk after dinner tonight. We got ice cream at our favorite spot (Santinos...remember my love for their pizza? Well they added ice cream a few years ago...pitter patter goes my heart!) Then we walked over to the new park in the village. It is just a paved path through a small wooded lot, but it is lovely. We let the kids run around and explore. Matt and I sat in awe and fell even more in love with our kids:)
A few things I learned on our walk....
Eli takes the longest to eat ice cream (by about 10 minutes).
Brady can climb in and out of the wagon now all by himself...AMAZING!
Cara has no shame about singing Twinkle Twinkle at the top of her lungs as we stroll through town, completely monotone of course.
Allie likes ice cream! She got her first taste tonight!
Eli likes to hold mommy's hand as he rides in the wagon.
Brady can kill a tiny caterpillar with his bare hands. He also will cry after he does so, and at his mommy's request, say to the caterpillar, "Sorry caterpillar. Feel better." And then blow it a kiss...
Cara likes to look at bugs, but only at a safe distance.
My children are truly amazing creatures to just sit back and observe...they take my breath away!
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Don't forget! You are invited to our Brady Bash! Saturday August 15 at 4pm. Please come to our house and join us as we celebrate Brady's journey and his life! We want to join together to say thank you to our friends, family, and community for all of their support!!! Please email me and let me know if you can come mwilliams91@rochester.rr.com
ALL ARE INVITED!
As many of you remember, the Ronald McDonald house provided us with lodging both at Strong Hospital in Rochester and in NYC during both of Brady's surgeries. We have never forgotten how invaluable being able to stay so close to Brady was during those touch and go times. At the Brady Bash, we would like to collect food items to donate to the Ronald Mc Donald House at Strong. Several people have offered to bring something to the party. In lieu of bringing a dish to pass, please consider helping us collect items for the RMH! I have contacted a friend who is on the board at the RMH and she told me that they are in most need of small packs of snacks, convenience food items, and anything that can be quickly grabbed and eaten in a hospital room. Ideas: boxes of granola bars, animal crackers, pkgs of cheese or pj crackers, chips, trail mix, cans of tuna, soup.
If you are coming to the party, would you please consider bringing one or more items to donate to this VERY worthy cause. We are going to collect the items and deliver them along with a letter thanking the RMH for being there for the Williams family! Thank you for helping us give back to this amazing organization!!!
All 6 of us took a fantastic walk after dinner tonight. We got ice cream at our favorite spot (Santinos...remember my love for their pizza? Well they added ice cream a few years ago...pitter patter goes my heart!) Then we walked over to the new park in the village. It is just a paved path through a small wooded lot, but it is lovely. We let the kids run around and explore. Matt and I sat in awe and fell even more in love with our kids:)
A few things I learned on our walk....
Eli takes the longest to eat ice cream (by about 10 minutes).
Brady can climb in and out of the wagon now all by himself...AMAZING!
Cara has no shame about singing Twinkle Twinkle at the top of her lungs as we stroll through town, completely monotone of course.
Allie likes ice cream! She got her first taste tonight!
Eli likes to hold mommy's hand as he rides in the wagon.
Brady can kill a tiny caterpillar with his bare hands. He also will cry after he does so, and at his mommy's request, say to the caterpillar, "Sorry caterpillar. Feel better." And then blow it a kiss...
Cara likes to look at bugs, but only at a safe distance.
My children are truly amazing creatures to just sit back and observe...they take my breath away!
--------------------------------------------------------------------------------
Don't forget! You are invited to our Brady Bash! Saturday August 15 at 4pm. Please come to our house and join us as we celebrate Brady's journey and his life! We want to join together to say thank you to our friends, family, and community for all of their support!!! Please email me and let me know if you can come mwilliams91@rochester.rr.com
ALL ARE INVITED!
As many of you remember, the Ronald McDonald house provided us with lodging both at Strong Hospital in Rochester and in NYC during both of Brady's surgeries. We have never forgotten how invaluable being able to stay so close to Brady was during those touch and go times. At the Brady Bash, we would like to collect food items to donate to the Ronald Mc Donald House at Strong. Several people have offered to bring something to the party. In lieu of bringing a dish to pass, please consider helping us collect items for the RMH! I have contacted a friend who is on the board at the RMH and she told me that they are in most need of small packs of snacks, convenience food items, and anything that can be quickly grabbed and eaten in a hospital room. Ideas: boxes of granola bars, animal crackers, pkgs of cheese or pj crackers, chips, trail mix, cans of tuna, soup.
If you are coming to the party, would you please consider bringing one or more items to donate to this VERY worthy cause. We are going to collect the items and deliver them along with a letter thanking the RMH for being there for the Williams family! Thank you for helping us give back to this amazing organization!!!
Tuesday, July 7, 2009
You are Invited!
For a while now we have had the idea of having a big celebration to mark the end of Brady's treatment! I remember during the really tough times in NYC, Matt and I would look at each other and say, "When this is all over, we are going to have a huge BRADY BASH!" Well, we are ready to celebrate!
We would like to invite you, yes YOU, to our home to help us celebrate Brady's journey, his life, and the miracles God has done for him. Matt and I also want to share a time of celebration with our family, friends, and community as a way to say THANK YOU to all who have stood by us in the last 6 months. What better way to put chemotherapy and two major surgeries behind us then to have a BIG PARTY!
Here are the details:
WHEN: Saturday August 15th 4pm until ?
WHERE: Our house (most of you know where we live, if you don't please email me and I'll give you directions:)
WHO: We want to include as many of "Brady's supporters" as possible! If you are reading this, YOU ARE INVITED!! I would love to send out invites to every single person who has supported, us, prayed for us, or donated to our cause, but it just isn't possible!
DETAILS: Come for dinner, dessert, and to have a great time! Some great friends of ours have donated the use of a huge bounce house and we will have many other fun activities for kids!
HOW TO RSVP: Please send me an email at mwilliams91@rochester.rr.com to RSVP. I do need somewhat of a count so that I can plan for food!
__________________________________________________________
No news from Sloan today. I'm hoping to hear from them by the end of the week. Our summer schedule is pretty busy, so it will be interesting to see how a trip to NYC fits in. Hopefully it will be just a 2 day trip.
Please pray for Cara as we go to the new eye specialist tomorrow regarding her head tilting. This is our "second opinion" doctor, and I'm really praying that he hears my concerns and can help us solve this mystery! Our appointment is at 8am in Rochester.
We would like to invite you, yes YOU, to our home to help us celebrate Brady's journey, his life, and the miracles God has done for him. Matt and I also want to share a time of celebration with our family, friends, and community as a way to say THANK YOU to all who have stood by us in the last 6 months. What better way to put chemotherapy and two major surgeries behind us then to have a BIG PARTY!
Here are the details:
WHEN: Saturday August 15th 4pm until ?
WHERE: Our house (most of you know where we live, if you don't please email me and I'll give you directions:)
WHO: We want to include as many of "Brady's supporters" as possible! If you are reading this, YOU ARE INVITED!! I would love to send out invites to every single person who has supported, us, prayed for us, or donated to our cause, but it just isn't possible!
DETAILS: Come for dinner, dessert, and to have a great time! Some great friends of ours have donated the use of a huge bounce house and we will have many other fun activities for kids!
HOW TO RSVP: Please send me an email at mwilliams91@rochester.rr.com to RSVP. I do need somewhat of a count so that I can plan for food!
__________________________________________________________
No news from Sloan today. I'm hoping to hear from them by the end of the week. Our summer schedule is pretty busy, so it will be interesting to see how a trip to NYC fits in. Hopefully it will be just a 2 day trip.
Please pray for Cara as we go to the new eye specialist tomorrow regarding her head tilting. This is our "second opinion" doctor, and I'm really praying that he hears my concerns and can help us solve this mystery! Our appointment is at 8am in Rochester.
Monday, July 6, 2009
More Great Pictures to Share
I raided my mom and my mother in law's camera cards today and saved a bunch of pictures that I just have to share! Before I do I should tell you that I spoke with two secretaries at Sloan today. Both are forwarding our request to do scans in August on to the Neuroblastoma team who needs to "ok" it in order to start the scheduling process. Before anyone gets upset at August versus July, remember that these things take time. Remember how long it took to get us there in the first place? Brady needs anesthesia for his MRI so there is a lot of coordination that needs to happen. We also have to make travel and other arrangements. So although August seems forever away, Matt and I think it is reasonable. After all, the NB team recommended November, so we will see if they agree to doing it early. If not, we will schedule here at Strong.
Now the fun stuff!!
Now the fun stuff!!
Allison Elizabeth...couldn't love her more!
Sunny days make Brady silly!
The Williams Family Harmonica Band!
A rare snuggle with Eli who is always on the move!
We had a Choo Choo Wagon Wash day!
My sweet pea!
While they do this they say, "Teeter-totter, teeter-totter!"
Home run Brady!
Sunday, July 5, 2009
"Boom Up in the Sky"
Well, we did it. We kept our family out at a social function until well past 10pm! My friends and family are giggling at me as they read this, but this is a big accomplishment for us.
My gorgeous niece Natalie celebrated her 1st birthday on the 4th of July, so we got to celebrate at her birthday party complete with a wonderful display of fireworks! It was a wonderful time and I think I was probably the only one in the crowd watching with tears in my eyes the whole time. Imagine, my whole "little" family snuggled around each other in the dark celebrating a wonderful time with family and friends. These are the times I long for and months ago feared would never be happy times again. God is good and last night I was so happy, so thankful, so hopeful...
My favorite quotes overheard during the fireworks:
Eli: (after an hour or so sitting and watching the fireworks) "Eli outside!"
Eli: "Daddy boom it up in the sky!" (He thought Daddy was in charge of the whole show!)
Brady: after watching quietly for 30 minutes:"How about blllluuuuee? How about ye-yo? How about pu-ple?" After a few more minutes, "How about marshmallow?
Cara: "How about pink?" After about an hour, "Cara go in the van, go night-night?"
And of course, some pictures of my beauties!
Eli did a lot of mowing. He was born to be a country boy!
Love this one!
Brady in the middle, keeping up with the gang!
Brothers
Allie was a sweetheart and enjoyed the fireworks sleeping in her daddy's arms!
Cara checking out the "deer."
Cara checking out the "deer."
Nothing makes my heart happier than seeing this boy running around with that smile!
Friday, July 3, 2009
Happy 4th of July
Have a wonderful 4th of July weekend everyone!
Celebrate family, friends, and freedom:)
Celebrate family, friends, and freedom:)
Thursday, July 2, 2009
It's Late, I Know:(
Matt's good friend from high school and his wife are in town this week, so we had company tonight. I'm just sitting down to the computer and at the same time wish I was snuggling into bed!
No news today. I didn't hear back from Sloan, as I had emailed them yesterday. I'm planning on calling tomorrow, although I'm not sure who I need to call. I'll start with my surgeon's office and see if they can direct me to someone that can help get Brady's scans scheduled. As far as our concerns with Brady this week, he is such a little mystery. He is very clingy one minute, and then chasing Eli around the house giggling the next. His tummy seems better, but his rib still looks funny to us. The feeling I got from Strong was that all they would do for us is schedule as scan, since there is no way to know if something is wrong without doing a scan first. It is reassuring to know that his urine levels (catecholamines) were collected in May and were normal. So I'm focusing my attention on getting a scan date for August at Sloan and just watching him like a hawk in the meantime.
For months I've been able to focus my prayer life on a whole lot of praise for all that God has done to heal Brady and bring our family back together again. I'm NEVER going to stop doing that, until my dying day!!! But, as I feel the grip of fear rising in me, I'm praying like I did back in January for God to show His awesome power and to keep this cancer away from Brady. I even felt a little bit bitter for having to pray that way again. Please keep our family in your prayers, that we will continue to trust God even in the scariest of circumstances and that His peace would pass all understanding as we continue on this roller coaster.
No news today. I didn't hear back from Sloan, as I had emailed them yesterday. I'm planning on calling tomorrow, although I'm not sure who I need to call. I'll start with my surgeon's office and see if they can direct me to someone that can help get Brady's scans scheduled. As far as our concerns with Brady this week, he is such a little mystery. He is very clingy one minute, and then chasing Eli around the house giggling the next. His tummy seems better, but his rib still looks funny to us. The feeling I got from Strong was that all they would do for us is schedule as scan, since there is no way to know if something is wrong without doing a scan first. It is reassuring to know that his urine levels (catecholamines) were collected in May and were normal. So I'm focusing my attention on getting a scan date for August at Sloan and just watching him like a hawk in the meantime.
For months I've been able to focus my prayer life on a whole lot of praise for all that God has done to heal Brady and bring our family back together again. I'm NEVER going to stop doing that, until my dying day!!! But, as I feel the grip of fear rising in me, I'm praying like I did back in January for God to show His awesome power and to keep this cancer away from Brady. I even felt a little bit bitter for having to pray that way again. Please keep our family in your prayers, that we will continue to trust God even in the scariest of circumstances and that His peace would pass all understanding as we continue on this roller coaster.
Wednesday, July 1, 2009
Familiar Territory
As of this morning I still hadn't heard back from the oncologist. Allie had her follow up appointment at 1pm, so I knew if they hadn't called by the time we got back, I would call them again. Allie's ears look better, but there is still fluid in both. She has to do 6 extra days of antibiotics to hopefully clear them up once and for all. We drove home from Rochester in some heavy rain, but it was sunny skies back home. Weird weather lately...
By 4pm I decided to call again. I spoke to the same nurse and was disappointed to find out that I can't directly call the nurse practitioner who works with our oncologist. You have to call an office, speak to an in-take person, who then relays the message to a nurse, who then emails your oncologist. Oh my...not liking the new system. I got a call back and the nurse told me that our oncologist wants to scan Brady in July rather than August. If you remember our last meeting with her was when she recommended a 3 month scan schedule. After that meeting, we sent the scans to Sloan and they recommended a 6 month scan schedule.
So, we are back in that familiar territory where we have to decide what to do. I told the nurse at Strong to hold off on making the appointment there. Matt and I emailed Sloan and asked if it would be possible to have a scan done there in July or August rather than wait until November. We want to go there for several reasons, but mostly because they do not intubate, they use much "easier" anesthesia, and their radiologists read NB scans every day. So we are waiting to hear back from them.
And Brady's tummy...Matt noticed that in the mornings it almost seems back to normal. So perhaps it is his tummy is very full after meals? His left lower rib does seem to protude more than the other, perhaps this is because the surgery on the other side changed his anatomy in some way? I was a bit perplexed that the oncologist here didn't want to see us before doing a scan. I asked the nurse flat out if I could get an appointment if I continued to be concerned in a few days. She said that of course they would see us, but reminded me that in every other way he is doing great, so try not to worry too much.
So friends, there you have it. I hope you are still reading after all the mumbo jumbo. If you have been with us a while you know that Brady's care has never been clear cut. BUT, the same God that was with us during surgery, during chemo, during our trip to NYC, is with us during this time. He is bringing me the strength to keep going even as I live with this nagging fear, and to keep pressing on and advocating for Brady even though I don't know what the best choices are. Just where would I be without His assurance?
Don't forget to check out our Alex's Lemonade Stand page to find out what's happening!
By 4pm I decided to call again. I spoke to the same nurse and was disappointed to find out that I can't directly call the nurse practitioner who works with our oncologist. You have to call an office, speak to an in-take person, who then relays the message to a nurse, who then emails your oncologist. Oh my...not liking the new system. I got a call back and the nurse told me that our oncologist wants to scan Brady in July rather than August. If you remember our last meeting with her was when she recommended a 3 month scan schedule. After that meeting, we sent the scans to Sloan and they recommended a 6 month scan schedule.
So, we are back in that familiar territory where we have to decide what to do. I told the nurse at Strong to hold off on making the appointment there. Matt and I emailed Sloan and asked if it would be possible to have a scan done there in July or August rather than wait until November. We want to go there for several reasons, but mostly because they do not intubate, they use much "easier" anesthesia, and their radiologists read NB scans every day. So we are waiting to hear back from them.
And Brady's tummy...Matt noticed that in the mornings it almost seems back to normal. So perhaps it is his tummy is very full after meals? His left lower rib does seem to protude more than the other, perhaps this is because the surgery on the other side changed his anatomy in some way? I was a bit perplexed that the oncologist here didn't want to see us before doing a scan. I asked the nurse flat out if I could get an appointment if I continued to be concerned in a few days. She said that of course they would see us, but reminded me that in every other way he is doing great, so try not to worry too much.
So friends, there you have it. I hope you are still reading after all the mumbo jumbo. If you have been with us a while you know that Brady's care has never been clear cut. BUT, the same God that was with us during surgery, during chemo, during our trip to NYC, is with us during this time. He is bringing me the strength to keep going even as I live with this nagging fear, and to keep pressing on and advocating for Brady even though I don't know what the best choices are. Just where would I be without His assurance?
Don't forget to check out our Alex's Lemonade Stand page to find out what's happening!
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