From our CaringBridge site:
It's official - we leave for Houston on Saturday morning April 23rd! Brady has appointments with Texas Children's Hospital and Proton Therapy Center next week for tests and getting him set up for radiation therapy. We have an apartment booked close to the hospital and are getting things packed.
I have to say that we have been very pampered this week with all the wonderful meals that have been delivered! Many folks from the Safford Grandparents sunday school class at First Baptist Church of Saginaw have come bearing homemade-with-love dishes and desserts, Mandy B. brought us the most amazing white pizza I have ever eaten and my sweet Aunt Gail brought dropped roasted chicken by as well. I've made meals for others before but I didn't realize how much appreciation we would have knowing that dinner was taken care of so we could tend to all the regular things of the house, plus get all the loose ends tied up to go to Houston. It truly has been a blessing! So thanks all of you for making this week a bit easier!
Brady is doing so well today. The spinal fluid that has collected from the surgery is decreasing but it moves so today it would appear that there is more because it has migrated to the temple area of his right side, but its not all over the place, just right in that spot. Anyway, he is definitly up and around and feeling so good!
In trying to wrap up my classes for this semseter I took 2 Child Growth and Development exams yesterday to be done with the class. I'm curious to see how I did as I did one review but just skimmed over the 2nd review questions and remembered most of the answers. Maybe an "A" maybe not, at this point I don't care! In A&P I will take an "Incomplete" and will take the final exam when we get back in June. Angelina will be withdrawn early from her PPCD pre-k class on Friday when we pick her up from school. I'm kind of sad for her that she doesn't get to finish out the school year but she is desparately needed in Houston!
Ok, the brood is getting out of hand so I've got to go mediate!
Thursday, April 21, 2011
Tuesday, April 19, 2011
A dear friend asked me to take a look at this entry from last year on my blog....
http://saffordblog.blogspot.com/2010/06/what-is-it-lately-about-next-blog.html
Interesting!
http://saffordblog.blogspot.com/2010/06/what-is-it-lately-about-next-blog.html
Interesting!
Brady rocked his procedures and awesome news!
From our CaringBridge site:
It was an early morning for us and I'm really tired, so this one is going to be short and sweet. Brady did very well through his procedures today and we got him home before lunch. He's bounced back wonderfully as the day passed. Dr. Murray called around 5:30 p.m. this evening with the wonderful news that Bradys cerebrospinal fluid looks to be clear of cancer cells!
So it looks like we will be packing up and heading out to Houston on Saturday morning to get Brady going on proton radiation treatment at MD Anderson!
Thank you all for your prayers for our sweet boy!
It was an early morning for us and I'm really tired, so this one is going to be short and sweet. Brady did very well through his procedures today and we got him home before lunch. He's bounced back wonderfully as the day passed. Dr. Murray called around 5:30 p.m. this evening with the wonderful news that Bradys cerebrospinal fluid looks to be clear of cancer cells!
So it looks like we will be packing up and heading out to Houston on Saturday morning to get Brady going on proton radiation treatment at MD Anderson!
Thank you all for your prayers for our sweet boy!
Monday, April 18, 2011
Procedures for Brady tomorrow
From our CaringBridge site:
Met with Dr. Murray, the oncologist, and his entourage today. He thought Brady looked really good and behaving like a 4 year old should be - silly, making jokes and trying to capture everyone's attention! We talked about procedures for tomorrow and what we can expect to happen if all the tests come back as expected.
Tomorrow morning we will arrive at Cook Children's registration at 5:30 a.m. - YES THAT EARLY - to register Brady for (1) port placement, (2) quick MRI, (3) lumbar puncture and (4) labs. The procedures actually start at 7:30 a.m., first on his surgeon's schedule, and should be finished around 11:30 a.m. or so. He will be completely under for all of this so he won't feel a thing. Dr. Murray said that the port placement will probably feel like he's been kicked in the shoulder so they will prescribe something for pain management, but the lumbar puncture he shouldn't even feel. Dr. Murray said that they will be at the lower end of the spinal column for the puncture so as not to damage any nerve endings and will be taking about 2 tsp of CSF (cerebrospinal fluid).
After the port placement the quick MRI will take place. Dr. Roberts (neurosurgeon) will immediatly read the quick MRI to make sure there is no collection of CSF in the cavity where the tumor was resected from so we can proceed from there. Once the "go-ahead" comes from Dr. Roberts, then Dr. Murray can do the lumbar puncture. [He is doing the lumbar puncture to make sure there are no cancerous cells in the CSF. If there are, then we have to regroup and take a different course entirely with treatment. Basically this will mean that Brady won't be eligible for the clinical trial that includes a shot at chemotherapy paired with the radiation. Also, it may mean that this cancer has matastisized to another location in his body.] All the docs feel very good that they will find no cancer cells in the CSF but they have to be 100% positive before we can move on with treatment. Finally blood will be drawn for various labs that have to be done for the trial.
We will have results late Tuesday or early Wednesday as to how the CSF looks and when we will take Brady for his first radiation treatment. If all goes well then we could be looking at next Monday! It's late and I have to be up at 4:30 a.m. so I will update more tomorrow. Good night!
Met with Dr. Murray, the oncologist, and his entourage today. He thought Brady looked really good and behaving like a 4 year old should be - silly, making jokes and trying to capture everyone's attention! We talked about procedures for tomorrow and what we can expect to happen if all the tests come back as expected.
Tomorrow morning we will arrive at Cook Children's registration at 5:30 a.m. - YES THAT EARLY - to register Brady for (1) port placement, (2) quick MRI, (3) lumbar puncture and (4) labs. The procedures actually start at 7:30 a.m., first on his surgeon's schedule, and should be finished around 11:30 a.m. or so. He will be completely under for all of this so he won't feel a thing. Dr. Murray said that the port placement will probably feel like he's been kicked in the shoulder so they will prescribe something for pain management, but the lumbar puncture he shouldn't even feel. Dr. Murray said that they will be at the lower end of the spinal column for the puncture so as not to damage any nerve endings and will be taking about 2 tsp of CSF (cerebrospinal fluid).
After the port placement the quick MRI will take place. Dr. Roberts (neurosurgeon) will immediatly read the quick MRI to make sure there is no collection of CSF in the cavity where the tumor was resected from so we can proceed from there. Once the "go-ahead" comes from Dr. Roberts, then Dr. Murray can do the lumbar puncture. [He is doing the lumbar puncture to make sure there are no cancerous cells in the CSF. If there are, then we have to regroup and take a different course entirely with treatment. Basically this will mean that Brady won't be eligible for the clinical trial that includes a shot at chemotherapy paired with the radiation. Also, it may mean that this cancer has matastisized to another location in his body.] All the docs feel very good that they will find no cancer cells in the CSF but they have to be 100% positive before we can move on with treatment. Finally blood will be drawn for various labs that have to be done for the trial.
We will have results late Tuesday or early Wednesday as to how the CSF looks and when we will take Brady for his first radiation treatment. If all goes well then we could be looking at next Monday! It's late and I have to be up at 4:30 a.m. so I will update more tomorrow. Good night!
Saturday, April 16, 2011
My Small Wonder
From our CaringBridge site:
let it go
let it roll right off your shoulders
don't you know
the hardest part is over
let it in
let your clarity define you
in the end
we will only just remember how it feels
our lives are made
in these small hours
these little wonders
these twists and turns of fate
time falls away
but these small hours,
these small hours still remain
let it slide
let your troubles fall behind you
let it shine
until you feel it all around you
and i don't mind
if its me you need to turn to
we'll get by
its the heart that really matters in the end
our lives are made
in these small hours
these little wonders
these twists and turns of fate
time falls away
but these small hours
these small hours still remain
all of my regret
will wash away some how
but i will not forget
the way i feel right now
in these small hours
these little wonders
these twists and turns of fate
these twists and turns of fate
time falls away
but these small hours
these small hours, still remain,
they still remain
these little wonders
these twists and turns of fate
time falls away
but these small hours
these little wonders still remain
rob thomas/small wonders
this song was an anthem for me when Angelina and Brady were in the NICU. all the small hours spent way into the night, talking, holding, crying, praying, watching. it felt like time stood still for hours. once they came home, the hardest part was over. shouldering all that came after paled in comparison to those first five months. i never thought anything could be so helpless and difficult to watch, to experience, even to remember.
now with all of this happening with Brady, i am drawn to this same anthem, some of the same feelings. today i feel the hardest part is over - he survived surgery, he came back to us completely. my perfect little boy, one of my smalll wonders, has amazed me again in his enduring strength. in preparing for our impending trip to Houston for his proton radiation therapy there are lots of details being tended to and checked off the list. sometimes i find myself still thinking - omg my baby boy has brain cancer, seriously?? seriously. its still difficult to wrap my mind around it all and how fast the last 11 days have come and gone. God continues to answer our prayers for our baby so i continue to remind Him i'm not questioning, just trying to sort it all out. some of the same feelings harken back to those NICU days but at least this time i don't have to get permission or help to hold my baby, he can just crawl up into my lap, give a big hug and say "mommy, i'm loving you" with a sweet Brady smile! seeing him in such wonderful shape gives me something to hold on tight to and believe that God is seeing this through. he is such a sweet and fascinating little man.
let it go
let it roll right off your shoulders
don't you know
the hardest part is over
let it in
let your clarity define you
in the end
we will only just remember how it feels
our lives are made
in these small hours
these little wonders
these twists and turns of fate
time falls away
but these small hours,
these small hours still remain
let it slide
let your troubles fall behind you
let it shine
until you feel it all around you
and i don't mind
if its me you need to turn to
we'll get by
its the heart that really matters in the end
our lives are made
in these small hours
these little wonders
these twists and turns of fate
time falls away
but these small hours
these small hours still remain
all of my regret
will wash away some how
but i will not forget
the way i feel right now
in these small hours
these little wonders
these twists and turns of fate
these twists and turns of fate
time falls away
but these small hours
these small hours, still remain,
they still remain
these little wonders
these twists and turns of fate
time falls away
but these small hours
these little wonders still remain
rob thomas/small wonders
this song was an anthem for me when Angelina and Brady were in the NICU. all the small hours spent way into the night, talking, holding, crying, praying, watching. it felt like time stood still for hours. once they came home, the hardest part was over. shouldering all that came after paled in comparison to those first five months. i never thought anything could be so helpless and difficult to watch, to experience, even to remember.
now with all of this happening with Brady, i am drawn to this same anthem, some of the same feelings. today i feel the hardest part is over - he survived surgery, he came back to us completely. my perfect little boy, one of my smalll wonders, has amazed me again in his enduring strength. in preparing for our impending trip to Houston for his proton radiation therapy there are lots of details being tended to and checked off the list. sometimes i find myself still thinking - omg my baby boy has brain cancer, seriously?? seriously. its still difficult to wrap my mind around it all and how fast the last 11 days have come and gone. God continues to answer our prayers for our baby so i continue to remind Him i'm not questioning, just trying to sort it all out. some of the same feelings harken back to those NICU days but at least this time i don't have to get permission or help to hold my baby, he can just crawl up into my lap, give a big hug and say "mommy, i'm loving you" with a sweet Brady smile! seeing him in such wonderful shape gives me something to hold on tight to and believe that God is seeing this through. he is such a sweet and fascinating little man.
Thursday, April 14, 2011
Getting back to life
From our CaringBridge site:
Let's begin with an edit from last night's entry! The Steven's came by with yummy dinner for us last night. We were talking about The Hatton's and they were stuck in my brain!
We got a deliver of delicious cookies from The Hatton's today and they were definintly made with love! Brady is doing so well with walking and coordination. Coming home has made all the difference for that. He is a bit emotional because of the steriod he is still taking but with his last dose being tomorrow morning that should subside in about a week. He has been eating everything in sight. We have to really be careful what we are allowing him to consume since he is on the mend. He complains some when I tell him no snacks just fruit and veggies, but he eats them anyway! I am trying to take advangtage of his eating right now to introduce him to other healthy things he normally wouldn't have eaten.
I actually got out of the house this morning to take Angelina to see Dr. Hunt her optomologist. She missed an appointment last week with all the chaos so getting her back on track and ready to hit the road to Houston. I stopped by to see my long time friend Michelle DiCola and get a hug from her. I don't get to see her very often so I was impressed with myself that I remembered we were in her neighborhood and could stop by. She always knows just what to say and has a huge hug waiting.
Debbie Barnes and her daughter, April, came by the house today for a visit. Larry and I haven't seen them in such a long time, it was really good to hug their necks! Thank you Debbie for your generosity and sweet well wishes. We appreciate you more than I have words for!
I am in the process of many things right now, one of which is to get Brady set up with Physical Therapy. I am hopeful tomorrow I will be able to get an appointment for a therapist to visit here in our home. Cross your fingers for me please!
I have been praying more than usual these days and more specifically as well. I really feel like God is helping Larry and I stay positive and strong for our little man and really guiding our decisions. I say that because of the decisions we have made none have left a lingering feeling of doubt, so that is really comforting to me. He is putting people in our lives that we need right now and making it possible for our close family members to be able to attend to all of us right now. I am so very thankful for all of this. I really feel that God has Brady wrapped up in his arms right now and will hold him close throughout all of the radiation and possible chemotherapy he'll endure. He's a tough kid and I am so blessed to be his Mommy!
Let's begin with an edit from last night's entry! The Steven's came by with yummy dinner for us last night. We were talking about The Hatton's and they were stuck in my brain!
We got a deliver of delicious cookies from The Hatton's today and they were definintly made with love! Brady is doing so well with walking and coordination. Coming home has made all the difference for that. He is a bit emotional because of the steriod he is still taking but with his last dose being tomorrow morning that should subside in about a week. He has been eating everything in sight. We have to really be careful what we are allowing him to consume since he is on the mend. He complains some when I tell him no snacks just fruit and veggies, but he eats them anyway! I am trying to take advangtage of his eating right now to introduce him to other healthy things he normally wouldn't have eaten.
I actually got out of the house this morning to take Angelina to see Dr. Hunt her optomologist. She missed an appointment last week with all the chaos so getting her back on track and ready to hit the road to Houston. I stopped by to see my long time friend Michelle DiCola and get a hug from her. I don't get to see her very often so I was impressed with myself that I remembered we were in her neighborhood and could stop by. She always knows just what to say and has a huge hug waiting.
Debbie Barnes and her daughter, April, came by the house today for a visit. Larry and I haven't seen them in such a long time, it was really good to hug their necks! Thank you Debbie for your generosity and sweet well wishes. We appreciate you more than I have words for!
I am in the process of many things right now, one of which is to get Brady set up with Physical Therapy. I am hopeful tomorrow I will be able to get an appointment for a therapist to visit here in our home. Cross your fingers for me please!
I have been praying more than usual these days and more specifically as well. I really feel like God is helping Larry and I stay positive and strong for our little man and really guiding our decisions. I say that because of the decisions we have made none have left a lingering feeling of doubt, so that is really comforting to me. He is putting people in our lives that we need right now and making it possible for our close family members to be able to attend to all of us right now. I am so very thankful for all of this. I really feel that God has Brady wrapped up in his arms right now and will hold him close throughout all of the radiation and possible chemotherapy he'll endure. He's a tough kid and I am so blessed to be his Mommy!
Wednesday, April 13, 2011
Homecoming fun
From our CaringBridge site:
After a car ride home to The Blackeyed Peas - Pump It listening to him sing along and bob his head to the beat we had a very decent night of sleep in our beds. Well, I was in my bed, Larry was on the floor next to Brady and Brady was in his old toddler car bed in our room.
Brady's first day back at home was really good. I explained to Cirstyn that Brady had an "owie" on his head and under no circumstances was she to smack him. She did pretty good for most of the day and only got him one time on the non-surgery side! I thought her Daddy was going to jerk her head off! Needless to say she spent some time alone in time-out in her room with the door shut - to her that is like Chinese water torture! Anyway, none of left the house all day long. No school, no appointments, nothing. It was really nice to hang out with the kiddos since we had been away from the girls for a week. Brady missed them so much and was telling us what we needed to do for his girls. He is so cute! I didn't get any pictures of them all together because mine scatter when the camera is out but I did get pictures of Brady climbing the stairs with his Daddy! He is getting stronger and stronger every day that passes. He went up to play with Dad then back down, made a lap around the sofa then parked it there for a while. I was so proud of him. His coordination and balance are coming back very well, what do we expect when the kid has been laid up in bed for 8 days and 5 of those on only fluids??!!
Larry's mom had dinner made for us last night when we got home and Larry and I believe it was the best hamburger pie we have ever eaten. My mom came by after work to check in on us and The Hattons, friends of Larry's parents, dropped by with a spaghetti casserole, salad, bread rolls and brownies - can you say yummy??!! We were quite touched that they were thinking of us, you could just taste the love! Larry's parents when grocery shopping for us so we wouldn't have to leave Brady - he kind of freaks out when one of us leaves the room much less the house! Well, it's more when Larry leaves, but then he starts looking for Mom! He played away in his room with Daddy to day with his football players and metal old school football game.
We have decided he is the glue of our little family. As the "good" child we have leaned on him to draw strength during other difficult times with Angelina and the girls both miss him when he is away. He was the breath of fresh air when he and his sister were still growing in the NICU and continues to be a beacon of spirit and strength. His resilience is amazing and words are not enough to express what this little boy truly means to his Mommy and Daddy. We love you Brady Baby!
After a car ride home to The Blackeyed Peas - Pump It listening to him sing along and bob his head to the beat we had a very decent night of sleep in our beds. Well, I was in my bed, Larry was on the floor next to Brady and Brady was in his old toddler car bed in our room.
Brady's first day back at home was really good. I explained to Cirstyn that Brady had an "owie" on his head and under no circumstances was she to smack him. She did pretty good for most of the day and only got him one time on the non-surgery side! I thought her Daddy was going to jerk her head off! Needless to say she spent some time alone in time-out in her room with the door shut - to her that is like Chinese water torture! Anyway, none of left the house all day long. No school, no appointments, nothing. It was really nice to hang out with the kiddos since we had been away from the girls for a week. Brady missed them so much and was telling us what we needed to do for his girls. He is so cute! I didn't get any pictures of them all together because mine scatter when the camera is out but I did get pictures of Brady climbing the stairs with his Daddy! He is getting stronger and stronger every day that passes. He went up to play with Dad then back down, made a lap around the sofa then parked it there for a while. I was so proud of him. His coordination and balance are coming back very well, what do we expect when the kid has been laid up in bed for 8 days and 5 of those on only fluids??!!
Larry's mom had dinner made for us last night when we got home and Larry and I believe it was the best hamburger pie we have ever eaten. My mom came by after work to check in on us and The Hattons, friends of Larry's parents, dropped by with a spaghetti casserole, salad, bread rolls and brownies - can you say yummy??!! We were quite touched that they were thinking of us, you could just taste the love! Larry's parents when grocery shopping for us so we wouldn't have to leave Brady - he kind of freaks out when one of us leaves the room much less the house! Well, it's more when Larry leaves, but then he starts looking for Mom! He played away in his room with Daddy to day with his football players and metal old school football game.
We have decided he is the glue of our little family. As the "good" child we have leaned on him to draw strength during other difficult times with Angelina and the girls both miss him when he is away. He was the breath of fresh air when he and his sister were still growing in the NICU and continues to be a beacon of spirit and strength. His resilience is amazing and words are not enough to express what this little boy truly means to his Mommy and Daddy. We love you Brady Baby!
Tuesday, April 12, 2011
Home from the hospital!
From our CaringBridge site:
Bradyn is home! The wish he has been presenting to us for 6 days now has finally come true! Today was an espcially rough day post-op. He had 6 tests to be done before going home, but they all came together wonderfully and he got his orders to come home. He was such a rock star today and totally got all this out of the way with a tear and a smile! It was almost 8pm when we got here and he was tired, but he was so excited that he was in his own home. Nana and Papa were here, the girls were in bed but he got to spend a little bit of time with Nana and Papa. After that all he wanted to do was crawl into bed.
We set up his old toddler car bed in our room so we could monitor him for the next few days or so especially since we would be getting up at odd hours for medicine. He has to be under supervision at all times since he is still wobbly but he is getting better with that every day. He will have to have outpatient physical therapy and hopefully we can do that here at home with Angelina's PT.
We will know more in the coming days about when we leave for his radiation treatment. We will be taking the 5 of us to Houston for about 2 months for Brady to have proton radiaiton treatment. They don't have that here at Cook's and it's a cleaner radiation treatment so we have to do it. We will more than likely be heading down there around the first of May. That will mean no school for Angelina and I don't know yet what I am going to do about my classes. It's not really the issue on the forefront of my mind right now!
God answered our prayer that he make it out of surgery and let him come home - we'll deal with the rest! Praise God for this!
We still can't thank everyone enough for all your prayers, love and support! Our families, the Cook Children's family that apparently adores Larry so much, all our friends and extensions of all these people - THANK YOU FOR PRAYING FOR OUR BABY!
For all those who came to visit, brought well wish gifts that put the smile on Brady's most handsome face, for the hugs, tears and supporting arms there just aren't words.
We are so glad to have brought him home. The hardest part is over - getting him through surgery - now treatment begins. He is a strong little boy and we intend to help him stay that way so he'll be around for a long, long time. Larry and I can't imagine life without him!
Love to you all!
Bradyn is home! The wish he has been presenting to us for 6 days now has finally come true! Today was an espcially rough day post-op. He had 6 tests to be done before going home, but they all came together wonderfully and he got his orders to come home. He was such a rock star today and totally got all this out of the way with a tear and a smile! It was almost 8pm when we got here and he was tired, but he was so excited that he was in his own home. Nana and Papa were here, the girls were in bed but he got to spend a little bit of time with Nana and Papa. After that all he wanted to do was crawl into bed.
We set up his old toddler car bed in our room so we could monitor him for the next few days or so especially since we would be getting up at odd hours for medicine. He has to be under supervision at all times since he is still wobbly but he is getting better with that every day. He will have to have outpatient physical therapy and hopefully we can do that here at home with Angelina's PT.
We will know more in the coming days about when we leave for his radiation treatment. We will be taking the 5 of us to Houston for about 2 months for Brady to have proton radiaiton treatment. They don't have that here at Cook's and it's a cleaner radiation treatment so we have to do it. We will more than likely be heading down there around the first of May. That will mean no school for Angelina and I don't know yet what I am going to do about my classes. It's not really the issue on the forefront of my mind right now!
God answered our prayer that he make it out of surgery and let him come home - we'll deal with the rest! Praise God for this!
We still can't thank everyone enough for all your prayers, love and support! Our families, the Cook Children's family that apparently adores Larry so much, all our friends and extensions of all these people - THANK YOU FOR PRAYING FOR OUR BABY!
For all those who came to visit, brought well wish gifts that put the smile on Brady's most handsome face, for the hugs, tears and supporting arms there just aren't words.
We are so glad to have brought him home. The hardest part is over - getting him through surgery - now treatment begins. He is a strong little boy and we intend to help him stay that way so he'll be around for a long, long time. Larry and I can't imagine life without him!
Love to you all!
Monday, April 11, 2011
The OFFICIAL diagnosis and prognosis
From our CaringBridge site:
Monday came and nerves set it. Today we are supposed to hear back on the pathology of this tumor. About an hour after getting up we got the call on what time we would conference about this thing. The close 1:30 pm came the more nervous I would get! Finally it was time to learn what was inside my baby's head and how it could be treated - if at all. Really that was my true prayer, please just let this thing be treatable and not life threatening, Lord. Well, he delivered our prayers!
Anaplastic Ependymoma - the official name of this cancerous tumor. Yes, it's brain cancer but not untreatable. It's a level III so it's a high-level agressive tumor. The treatment is surgery first - get it all out! That is key in treatment. Luckliy for Bradyn, Dr. Roberts is one of the best in his field and was so agressive in getting it out tha the got it all. Next, is radiation therapy. He will need to start this in a few week. It will take 6 weeks, 5 days per week. Then maintenance scans to make sure it's not coming back.
We are so relieved that it's not the worst kind of cancer and there is a treatment for a cure! All the prayers for Bradyn have been heard and he is on the way to be free of all this.
Monday came and nerves set it. Today we are supposed to hear back on the pathology of this tumor. About an hour after getting up we got the call on what time we would conference about this thing. The close 1:30 pm came the more nervous I would get! Finally it was time to learn what was inside my baby's head and how it could be treated - if at all. Really that was my true prayer, please just let this thing be treatable and not life threatening, Lord. Well, he delivered our prayers!
Anaplastic Ependymoma - the official name of this cancerous tumor. Yes, it's brain cancer but not untreatable. It's a level III so it's a high-level agressive tumor. The treatment is surgery first - get it all out! That is key in treatment. Luckliy for Bradyn, Dr. Roberts is one of the best in his field and was so agressive in getting it out tha the got it all. Next, is radiation therapy. He will need to start this in a few week. It will take 6 weeks, 5 days per week. Then maintenance scans to make sure it's not coming back.
We are so relieved that it's not the worst kind of cancer and there is a treatment for a cure! All the prayers for Bradyn have been heard and he is on the way to be free of all this.
Brady's Turn - and so the other shoe drops
From our CaringBridge site:
Tuesday morning, April 5, 2011, the shoe we thought that rested neatly in the closet of our minds decided to drop. An ER doctor told us Brady has a mass in his brain and it's not small. My healthy boy who all this time we thought had made it out of his bumpy entry into the world virtually unscathed is now on an operating table in a Cook Children's OR having brain surgery to remove a mass the size of a baseball in his brain.
This all started about 4 weeks ago when Brady started vomitting intermittently every couple of days and complaining of headaches. He also had allergies, like the rest of us, so we monitored it for about a week. After that we took him to see his pediatrician because we were worried it was something else. Since his reflexes were good and he wasn't displaying any other signs or symptoms to send up red flags she thought it was more just related to allergies. She told us to watch for waking up in the middle of the night from a headache, uncoordination or other things similar that would be odd. None of these things had happened so we continued to watch him. This lasted for about a week longer but he still was behaving fine, playing, eating but only tired some. That finally subsided and life went on as normal. Then last Friday he vomitted again but it didn't seem to affect him other than just going to bed early that night. Saturday we had a full day with the MS walk then to a birthday party at a bouncy house place, he had a blast all day so going to bed early wasn't a shock to me. Sunday he was still tire, but played with his sisters.
Monday he got up with lots of energy ate breakfast but then was laying his head down on the kitchen table complaining of a headache. So he gets set up on the couch with a blanket and pillow watching a movie when out of nowhere vomit all over the place! After that he couldn't keep anything down, not even water. This lasted for 24 hrs then we were at the pedi's office. We didn't see their regular pediatrician but one of the partners. I explained what had been happening while Brady lay sleeping on the exam bed. Dr. Worsley seemed concerened about the headaches coupled with the vomitting. Again, Brady's reflexes were good but he was doing something wierd with his mouth. He wouldn't say if he was being silly or not so Dr. Worsley said let's go to Cook Children's and get him some fluids and we'll do a CT scan just to rule out anything neuro. So away we went. We met Larry at Cook's ER and got back really quickly to get him assessed. Fluids were started and a little while later we head back for a CT scan.
About an hour later the ER doc came in and settled against the counter. "Unfortunately it's not good. There is a mass and its sizeable." Oh my God, NO! NO, NO, NO! This was supposed to rule out all the bad head stuff not produce it! How can this be happening to my baby?? What now?
After an initial cry, I went back to look at the CT scan while Larry stayed with Brady. I knew it when I saw it and it was huge. I don't really recall what the NP was saying about the scan, I know enough about them and she wasn't going to be able to tell me anything I didn't already know. All I could think was how could this thing have been growing inside my baby's head all this time and we never knew. Refocus, how do we take care of this? What’s the next step? After talking to a few different doctors the next step is to wait for an MRI. So we wait for the rest of Tuesday and half of Wednesday to get him into an MRI machine.
This was the longest wait, wondering what the hell is growing inside my baby. Is it a cyst, is it cancer, is it treatable? We got the report back on the MRI and it seemed not so bad the way it was explained. Basically it was a watery mass with a formed circular wall. Hopefully this meant it was a cyst but cysts don't have formed walls. It was a relief somewhat because they were hopeful that it wasn't a malignancy. Not completely sure, but hopeful.
Now we prepare for the long day ahead for surgery. This evening Brady needed to get another IV line started. It took 7 nurses and 1 doctor before they finally got it to stay. His veins kept blowing the IV right out. We felt so sorry for him because he was so distraught and begging us to stop hurting him. Finally, when the doctor came to take a look Larry just told him. If he didn't think he was gonig to get it then no more! That is when they finally got it to stay. This whole process took about 2 hours and now Brady was totally exhausted it was like midnight so no good sleep for him or us before the worst day of our lives to date!
Thursday morning surgery time came and Larry and I were dreading it. We walked with Brady down to the OR and all he could talk about was that Andre Johnson was his favorite player and how he wanted to tell the nurses who his favorite player was! It was so cute and funny that it made it a little easier to let him go to surgery in good spirits. We later got a call from the nurse letting us know that they asked him if he knew who Brett Farve was and his response..."Brett Farve's a LOSER!" They thought he was so funny! During his 10 hour surgery they called every hour to let us know how he was doing and he was stable the entire time only needing one transfusion for normal blood loss.
Finally, it was over and Dr. Roberts, the surgeon, arrived to talk with us about the procedure. All went well, text book even, but it was very large and looked to be a high-level malignancy but couldn't say for sure on anything until the final pathology report came out. That was hard to swallow, but we were bound to keep it together. The room was so quiet and I just needed to pace a little, breathe and process this information. After about 5 minutes the surgeon came back in with a much better look on his face and told us Bradyn had other plans. He had extubated himself and was asking for help and his mommy and daddy! We were so ecstatic! I know I couldn't wait to get to his bedside to see him, I could barely contain myself! He was telling the nurses and techs to leave him alone, he didn't want to get mad! He nearly came off the bed when they tried to put a pull up on him exclaiming he wasn't a baby, he was a big boy, he wears underwear! Larry and I couldn't have been more relieved. We both had this huge underlying fear that Brady wasn't going to make it through surgery alive so this was so awesome! I was so glad we didn't lose it after talking with the surgeon since this surprise was waiting for us.
We both finally got a few more hours sleep Thursday night and Friday he was scheduled for a post-op MRI to make sure they got it all and it looked really clean. Now we wait to be moved out of ICU and to see wha thte final pathology report would tell us about this tumor.
The weekend was good with many more visitors and goodies for Brady! We moved out of the ICU and up to the 4th floor on Saturday afternoon. Brady is recovering well from his surgery and by Sunday evening his right eye that was swollen shut has almost completely opened up. He really became himself over the weekend after getting all that anesthesia out of his system. He talked and ate all day Sunday making up for lost time!!
Tuesday morning, April 5, 2011, the shoe we thought that rested neatly in the closet of our minds decided to drop. An ER doctor told us Brady has a mass in his brain and it's not small. My healthy boy who all this time we thought had made it out of his bumpy entry into the world virtually unscathed is now on an operating table in a Cook Children's OR having brain surgery to remove a mass the size of a baseball in his brain.
This all started about 4 weeks ago when Brady started vomitting intermittently every couple of days and complaining of headaches. He also had allergies, like the rest of us, so we monitored it for about a week. After that we took him to see his pediatrician because we were worried it was something else. Since his reflexes were good and he wasn't displaying any other signs or symptoms to send up red flags she thought it was more just related to allergies. She told us to watch for waking up in the middle of the night from a headache, uncoordination or other things similar that would be odd. None of these things had happened so we continued to watch him. This lasted for about a week longer but he still was behaving fine, playing, eating but only tired some. That finally subsided and life went on as normal. Then last Friday he vomitted again but it didn't seem to affect him other than just going to bed early that night. Saturday we had a full day with the MS walk then to a birthday party at a bouncy house place, he had a blast all day so going to bed early wasn't a shock to me. Sunday he was still tire, but played with his sisters.
Monday he got up with lots of energy ate breakfast but then was laying his head down on the kitchen table complaining of a headache. So he gets set up on the couch with a blanket and pillow watching a movie when out of nowhere vomit all over the place! After that he couldn't keep anything down, not even water. This lasted for 24 hrs then we were at the pedi's office. We didn't see their regular pediatrician but one of the partners. I explained what had been happening while Brady lay sleeping on the exam bed. Dr. Worsley seemed concerened about the headaches coupled with the vomitting. Again, Brady's reflexes were good but he was doing something wierd with his mouth. He wouldn't say if he was being silly or not so Dr. Worsley said let's go to Cook Children's and get him some fluids and we'll do a CT scan just to rule out anything neuro. So away we went. We met Larry at Cook's ER and got back really quickly to get him assessed. Fluids were started and a little while later we head back for a CT scan.
About an hour later the ER doc came in and settled against the counter. "Unfortunately it's not good. There is a mass and its sizeable." Oh my God, NO! NO, NO, NO! This was supposed to rule out all the bad head stuff not produce it! How can this be happening to my baby?? What now?
After an initial cry, I went back to look at the CT scan while Larry stayed with Brady. I knew it when I saw it and it was huge. I don't really recall what the NP was saying about the scan, I know enough about them and she wasn't going to be able to tell me anything I didn't already know. All I could think was how could this thing have been growing inside my baby's head all this time and we never knew. Refocus, how do we take care of this? What’s the next step? After talking to a few different doctors the next step is to wait for an MRI. So we wait for the rest of Tuesday and half of Wednesday to get him into an MRI machine.
This was the longest wait, wondering what the hell is growing inside my baby. Is it a cyst, is it cancer, is it treatable? We got the report back on the MRI and it seemed not so bad the way it was explained. Basically it was a watery mass with a formed circular wall. Hopefully this meant it was a cyst but cysts don't have formed walls. It was a relief somewhat because they were hopeful that it wasn't a malignancy. Not completely sure, but hopeful.
Now we prepare for the long day ahead for surgery. This evening Brady needed to get another IV line started. It took 7 nurses and 1 doctor before they finally got it to stay. His veins kept blowing the IV right out. We felt so sorry for him because he was so distraught and begging us to stop hurting him. Finally, when the doctor came to take a look Larry just told him. If he didn't think he was gonig to get it then no more! That is when they finally got it to stay. This whole process took about 2 hours and now Brady was totally exhausted it was like midnight so no good sleep for him or us before the worst day of our lives to date!
Thursday morning surgery time came and Larry and I were dreading it. We walked with Brady down to the OR and all he could talk about was that Andre Johnson was his favorite player and how he wanted to tell the nurses who his favorite player was! It was so cute and funny that it made it a little easier to let him go to surgery in good spirits. We later got a call from the nurse letting us know that they asked him if he knew who Brett Farve was and his response..."Brett Farve's a LOSER!" They thought he was so funny! During his 10 hour surgery they called every hour to let us know how he was doing and he was stable the entire time only needing one transfusion for normal blood loss.
Finally, it was over and Dr. Roberts, the surgeon, arrived to talk with us about the procedure. All went well, text book even, but it was very large and looked to be a high-level malignancy but couldn't say for sure on anything until the final pathology report came out. That was hard to swallow, but we were bound to keep it together. The room was so quiet and I just needed to pace a little, breathe and process this information. After about 5 minutes the surgeon came back in with a much better look on his face and told us Bradyn had other plans. He had extubated himself and was asking for help and his mommy and daddy! We were so ecstatic! I know I couldn't wait to get to his bedside to see him, I could barely contain myself! He was telling the nurses and techs to leave him alone, he didn't want to get mad! He nearly came off the bed when they tried to put a pull up on him exclaiming he wasn't a baby, he was a big boy, he wears underwear! Larry and I couldn't have been more relieved. We both had this huge underlying fear that Brady wasn't going to make it through surgery alive so this was so awesome! I was so glad we didn't lose it after talking with the surgeon since this surprise was waiting for us.
We both finally got a few more hours sleep Thursday night and Friday he was scheduled for a post-op MRI to make sure they got it all and it looked really clean. Now we wait to be moved out of ICU and to see wha thte final pathology report would tell us about this tumor.
The weekend was good with many more visitors and goodies for Brady! We moved out of the ICU and up to the 4th floor on Saturday afternoon. Brady is recovering well from his surgery and by Sunday evening his right eye that was swollen shut has almost completely opened up. He really became himself over the weekend after getting all that anesthesia out of his system. He talked and ate all day Sunday making up for lost time!!
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