Tuesday, December 29, 2009
9pm Cara cried and cried in her crib. She is not feeling well and sounds very croupy.
10pm Still struggling to get to sleep, Cara is really wheezing.
11:30pm Still wheezing, Cara and I sit in the bathroom while the hot water creates enough steam to hopefully open up her little lungs.
1am Matt and I decide that Cara can't wait until tomorrow morning to get something to help her wheezing. We have a quick "Who's going to take her" discussion and I, despite having taken a Tylenol PM earlier in the night, decide I'll go.
2am Little Cara and I are seen by a very nice doctor in the ER who confirms, yes it's croup, but she will be fine with a dose of steroids.
3am We arrive home (did I mention it was 9 degrees on our ride home?) and Cara settles down for bed.
Matt, my sweet and considerate husband, called his mom to see if she would come over in the morning so that I could sleep. When I woke up the furnace repair men were already busy in the basement. So dear, sweet Grandma Sandy had the 4 kids in Allie's room, with all the doors closed, with a bunch of toys trying to keep warm while we were without heat. Cara was already feeling better, although kind of cranky (those darn steroids).
Allie continues to be quite stuffy and has a little cough, and poor Eli is pretty sick himself. I was able to take my nephews to the movies in the middle part of the day and we had a great time!
I think the Williams family is going to be just fine in a couple of days. I'm so happy to just have stuffy noses and coughs compared to what I know other families are dealing with. For now, I have four sleeping babies, a nice warm house, and a really great family picture that I'll be sharing with you sometime this week. Let's just say, there must have been some divine intervention to capture this picture! I LOVE it!
Monday, December 28, 2009
Around 9am this morning I finally sat down to have my first cup of coffee. I had been running around for the past 1 1/2 getting breakfast ready, feeding the kids, cleaning up, changing some diapers...Once I sat down I started to notice I was a little chilly. I asked Brady to come sit next to me and warm me up. Then I asked Eli to come over with us...that is when I noticed his teeth were chattering. Brady's nose was red and his cheeks were really cold too! So I checked the thermostat which is always set at 68 during the day and it read...62!
It was then I realized something was wrong with the furnace. I turned it up, nothing. I turned it off, then on again, nothing. I looked at my four kids, all of whom are sick, and knew it was going to be one of those days. I gave Matt a quick "We have a problem, fix it!" phone call. He got a hold of someone but they couldn't come until later in the day. He gave me a few options of using an oil heater and a tiny electric one. The idea of keeping my 4 monsters off of heaters all day long frightened me down to my very chilly bones. I made the decision that we would pack up and head to Grandma's for a while.
So we spent a few hours over there with all of the cousins. After lunch the repairman called to say that the problem was our thermostat and that our 21 year old furnace wasn't great, but it was working okay. So we decided to head home at nap time. It was snowing pretty hard, that really wet snow. The kids noses were running all over, they were cranky, I was getting soaked. I almost cried when I pulled into the driveway to see that the repairman was parked directly in front of the garage. That meant I had to schlep the kids out of the van, into the snow-filled driveway, while carrying the baby--and two huge bags, and get us all across the driveway, through the garage, up the sidewalk, up the stairs, and into the house. We finally made it there and thank God it was nap time.
It turns out we will be getting a new furnace tomorrow anyway. Apparently the tax incentive and energy efficiency make it a good purchase. That old thing could go any day. So tomorrow, with temps in the teens I think, we will be without heat for part of the day. Great plan for those who will be at work tomorrow, scary plan for the person who will be here with 4 sick and cold children!
Actually I'll be gone tomorrow for a little bit and Grandma Sandy will be here with the kids. I'm taking my nephews on a lunch/movie date. It's an annual tradition! Of course I'll have to see how the situation is going here at home. We may need to take another field trip to stay warm!
Here's hoping you are staying warm wherever you are!
Sunday, December 27, 2009
Later on in the day everyone came over to our place for pizza and wings. My sister and her family just crave NY pizza and wings and Santinos never fails to satisfy their craving:) I think it is safe to say that Minnesota isn't known for its pizza. My kids played with their big cousins like wild hooligans for hours. It's amazing to see how out of control they get with just a little bit of extra attention!
Matt is back to work tomorrow:( But how nice to have my sister and family to fill in the lonely time without him!
Saturday, December 26, 2009
Christmas 2009! The day truly exceeded our expectations! We started the day at home, with Grandma, Grandpa, and Great Grandma Vera joining us for Christmas morning!
The kids followed me into the living room as I jingled the sleigh bells. Here they are as they first saw the Christmas tree!
Brady quickly realized that the cookies we had left for Santa were gone!
Then the fun began!
Allie came down with a cold on Christmas Eve, but she had a fun day despite not feeling well!
Eli opened a small helicopter and decided he didn’t need anymore gifts. He went into the playroom and sat all alone, to play with his new helicopter. What a sweet boy…
Allie climbed on top of the pile of gifts!
Brady wanted to open every gift and FAST!
Later we were off to Grandma Kathy’s for dinner and gifts with my side of the family. This of course includes 8 grandkids, 6 of whom are 3 and under! My mom doesn’t “do” baby proofing, so it is non stop baby chasing!
Here are 5 of the kids: Allie, Natalie, Aubrey, Cara, and Eli
Cara’s beautiful princess outfit!
Uncle Andy showing Brady his new car set.
Grandma Kathy and Allie, snuggling her new baby doll.
And my favorite picture of the day. Grandma and Brady by the tree. They are our two cancer survivors, or as they call each other “Numma and Goofball!”
I posted a facebook status update yesterday that went something like this, “Present are opened, stockings unstuffed, the excitement has dwindled. But the true meaning of Christmas, the birth of our Savior, is the gift that goes on and on…”
I’m so glad for that!
Thursday, December 24, 2009
And all through the house…
Not a creature was stirring, not even a mouse…
The children were nestled, all snug in their beds. While visions of sugarplums danced in their heads.
The Williams family
is ready for Christmas!
The cookies for Santa are out…
The stockings are filled…
And our hearts are filled with the joy of Jesus’ birth!
O Come, Let Us Adore HIM!
Merry Christmas from our family to yours!
Wednesday, December 23, 2009
You can't complain when you kids sing you Happy Birthday all throughout your day! They were so sweet about it and couldn't wait to have cake!
I started the day having breakfast with two other special people at my church who share my birthday. We had such a great time that we are going to try and make it a tradition. Thanks Pastor, Joyce, Greg, Laurie, and Allison for a great start to my day! By the way---did you know you get a free Grand Slam at Dennys on your birthday? Now you know!
The middle part of my day was spent home with the kids. I did a lot of cleaning and prayed that they would settle down for a long nap. Happy Birthday mommy, they all slept from 1-4!!! Matt came home a little early and he and I snuck away for a quick dinner out. My sister and her family flew here from MN today and were at our house after dinner for cake, along with mom, and my brother's family. Total chaos ensued as the 8 cousin (6 of them 3 and under) played, wrestled, chased, and got reacquainted!
So--it's official! It's Christmas! Merry Christmas to all!!!
Tuesday, December 22, 2009
December 23, 2008
It was 2 days before Christmas and our house was busy! The triplets were 1 1/2 and Allison was just 6 weeks old. It also happened to be my 30th birthday. We had made an appointment 2 months prior to see a developmental pediatrician at Strong Hospital. Despite being told my 2 physical therapists and even our own pediatrician that Brady was probably just "behind", we both knew something was wrong.
Brady had done everything first. He was the first to come home from the NICU, first to sleep through the night, first to sit up and to crawl...but then the firsts stopped. Eli and Cara caught up to him and then surpassed him. At 18 months of age he wasn't walking, and in fact seemed to be regressing. We had sought out early intervention for him 2 times, and he finally qualified when he reached an age at which the gap between his age and his motor skills was big enough. Physical therapy wasn't going well. Brady was unhappy and just seemed to be falling further behind. Our boy that used to pull to stand rather quickly began to struggle to get his legs under his body.
I don't remember too much about what I was thinking on our way to the appointment. Looking back I was totally oblivious to what "could" be wrong. I thoroughly thought the doctor would just tell us that Brady was a low tone kid, maybe because he was born 6 weeks early. The doctor listened to us describe Brady's history, and then began evaluating his reflexes. This is something Matt had done several times and had detected an irregular reflex. The doctor asked to see him walk, Brady reluctantly held our arms and attempted walking. I remember the doctor asking Matt and I what thoughts came to mind when we heard the term, "Cerebral palsy." I instantly remember that horrible flushed, hot, sick feeling you get when you hear words that will change your life forever. I remember answering him by saying, "It's a life long condition, you don't get better, you can't physically do everything a typical person can." He shook his head in agreement and then went on to tell us that Brady had spastic diplegia, a form of cerebral palsy that affects both legs. The next few minutes were a blur for me, I remember hearing that this problem probably occurred at birth, due to prematurity and small brain bleeds that often accompany being born early.
I hated that he was telling me that this was because Brady was a triplet born early. In my head, I argued with him, "No, I carried those babies to 34 weeks. All the doctors told us that we were out of the woods for those types of things." I was devastated that this had to do with my pregnancy and carried a lot of guilt out of that office.
He told us that Brady would need to have an MRI of the brain to confirm evidence of a brain bleed. The scan wouldn't be for another month. I think at some point I interrupted him and blurted out, "So, will Brady ever play t-ball?" It sounded like a stupid question, t-ball? My son was just diagnosed with a permanent, life long condition and all I could think about was t-ball? I asked this question because I knew at the moment, in that room, my husband's heart was breaking. This was his Brady boy, his little clone. I knew that all of Matt's hopes and dreams for Brady were now in limbo and that with a little bit of hope from this doctor that yes, he would play t-ball, that Matt would be okay. I'll never forget when the doctor looked at me and answered, "He won't be able to do everything, but he will find plenty he can do." After that heart-breaking response, he went on to tell us that he was confident Brady would walk, but when and how well would remain to be seen.
Matt and I didn't talk much on the way home. We cried and cried, we sat in silence. I was overwhelmed to think that I had triplets, a newborn, and now a disabled child. How would God give me the strength to handle this all? Why was God piling this all on me? Didn't He remember that I was the kind of person who could find herself depressed and anxious when life handed out too much?
He knew all of that. He also knew that He was preparing me for the biggest battle of my life. This terrible day really brought Matt and I together. In the month that followed, leading up to the scan, Matt and I scoured the internet during every waking moment. Every night he would be on the computer upstairs, while I was on the laptop downstairs, reading every article, journal, and blog we could about CP. We read, we took notes, we discussed, and a seed of doubt started to grow. We both started to question this doctor's diagnosis, the pieces just didn't fit. CP is a condition from birth, Brady had developed normally until about 13 months. A regression of skills led us to believe that Brady wasn't born with this, something had happened at some point. We didn't know what it was, but I started to really believe that the doctor should scan Brady's back just to check things out. I even remember saying to Matt, "Honey, people have all sorts of tumors in weird places that can cause all kind of problems." We frequently watched Mystery Diagnosis, and I was a bit of a hypochondriac after learning about all of the diseases out there! I told him I was going to call the doctor and insist on a spinal scan.
When I did call, the receptionist questioned me and said, "What makes you think this needs to be done? You aren't the doctor!" I called again and again. She finally told me that if our insurance would cover it, then they would do it. Our insurance denied the scan. Luckily it was the beginning of January, and open enrollment for insurance plans was just starting. Matt had to switch plans at work, and once we did, we resubmitted our request and then scan was approved immediately. This is one of those times in my life that I know God intervened on Brady's behalf. Without this scan, we never would have known that Brady had cancer. The tumor would have paralyzed him without us even knowing it was there, and most likely the Neuroblastoma would have spread beyond a point of survival.
You all know the rest of the story. If perhaps you are new to our blog, you can go back and start reading at January 21, 2009.
Christmas was a very sad time last year. We had broken hearts, a crippled son, and our hope was fading.
What a different feeling this year. My sister arrives tomorrow, the Christmas season will be in full swing, and my heart is full of so much joy and hope. This isn't just because Brady is healthy this year, but because of all that God has shown me in the year 2008. He has taken my broken heart and restored it. He has taken our sorrow and shown us a greater purpose. He has taken our critically sick son and given him a hope for a full life! All of this from the God that was born in a simple manger so long ago. It is my hope that all who read our story will come to know the hope and joy that can only be found through Jesus.
Thanks for allowing me to share that story with you all tonight. I'm sure I'll be checking in with some great pictures in the next few days.
From our very merry family to yours, Merry Christmas one and all!
Monday, December 21, 2009
Brady and I need to be on the road at 7:30 tomorrow morning for PT. If you would, please say a prayer for us all to be restored to great health soon. A sick family for Christmas would be so sad!
Sunday, December 20, 2009
The kids came house pretty exhausted and after a bath and a bowl of cereal they were off to bed. I can hardly wait to get this week started! They are going to be so wiped out everyday, but are going to have the best time!
3 more days until my sister and her family come to town and we can't wait. Something about having family come home at Christmas that makes everything even more exciting.
My heart is to full of joy this year. The events of this week last year are still fresh in my mind and it's hard to not get sad when I think about them. But, just to look at my children this year, happy, healthy, and thriving reminds me of what a mighty God we serve. So this year we are not only celebrating the birth of our Savior, but the many ways in which He has made this Christmas so special.
Saturday, December 19, 2009
What a great time I had today with my little girl and my mom! Today was our big outing to see Madeline’s Christmas in Rochester. The show was lovely and of course Cara just loved that the whole cast was made up of little girls! She did very well sitting through the whole performance. Of course I was slipping her mini marshmallows and my mom was giving her Smarties throughout the entire show! It was great to spoil just her for the day.
Any Williams family outing is not complete without a little mishap. My mom had to make a quick stop after the show and Cara and I were waiting in the car. She announced that she had wet through her diaper by saying, “Mommy, I wet through it all!” Sure enough, she was drenched…but I was relieved I had packed an extra outfit. She had pants, a shirt, and s….oh wait, I didn’t pack socks! She was wearing tights (which also were soaked) and I hadn’t thought to pack socks. So my poor baby went to lunch with no socks and her dress shoes. She was hilarious as her and I were cramped in the back of the van changing her. As people walked by she would say, “Hi lady, do you have a pair of socks?” Then we we drove to lunch, she pointed at the car next to us and said, “She got no socks, just gloves!” I did put my mittens on her bare feet on the drive to the restaurant which she thought was too funny! As always, she was a great sport about the whole thing!
Here we are today before we left for the show!
Friday, December 18, 2009
Perhaps it isn't the ideal time of year to replace the 7 sets of windows in our sunroom, but when we can feel our hair moving with the winter wind, we knew it had to be done. This room is right in the middle of our house and also is our playroom. Grandma Sandy and I camped out with the kids in the basement all morning. I have to say it was rough. I need to be in my element, with our "stuff," and have to say I felt slightly trapped being in the same room with the kids all morning. The usually have free reign of the main level of our house. They meander around the 6 rooms and play with each other and once in a while even let me play:) But I guess I realized today that it is nice to have them spaced out a little more. There were plenty of fights among them and I was starting to feel like I was trapped in a cage! By naptime the workers were pretty much finished and the windows look great:)
Tonight we went to Grandma and Granpa's to celebrate my birthday a few days early! Grandma and I decided that neither of us should cook, so take out Chinese it was! Watching Brady slurp lo-mein noodles into his mouth was our dinnertime entertainment:) Matt and I feel like it is vacation over there...Grandpa entertained the kids all night and we had nothing else to do but sit and relax!!!
Tomorrow Cara, my mom, and I are going to see a stage production of Madeline's Christmas. This is my first special outing with Cara and I can't wait!!!
I truly hope you all are enjoying peace, joy, and love this Christmas season. May we all feel the joy of God's love in our hearts and may we share that love we everyone we meet!
Wednesday, December 16, 2009
The first video is from April of this year. Brady was done with treatment and had his surgery just weeks before. He was just over 2 years old and was taking his first steps with only traces of new hair on his cute little head. We shared this video back then, but in order to see how far we've come, we need to remember where we started! Turn your sound on, and click the link below:
And now for proof that miracles happen! Here is Brady a few days ago in one of his silly Brady moods. He was running through the house, jingling a bell, and singing Jingle Bells over and over. He, like many 2 year olds, sometimes confuses lyrics. Instead of hearing, "Jingle Bells, jingle bells, jingle all the way! Oh what fun it is to ride in a one----horse---o---pen---sleigh," Brady heard "Jingle Bells, jingle bells, jingle all the way, door open!" Ha! Oh, and there is a short clip of Allie at the beginning of this video. She was walking around with Cara's baby doll and I couldn't believe how she was mothering it! And you will notice Brady trying to get on camera in the background.
Now does that look like a boy who was almost completely paralyzed by a spinal tumor to you?
Thank you Brady for being my daily reminder of what God can do. And thank you Matt for getting these videos up for us:)
I got the most hilarious video of Brady running through the house yesterday singing Jingle Bells. My sweet hubby tried for hours last night to get it on the blog. Turns out our video camera (which we bought around the time our kids were born) is somehow not new enough to work with our new laptop. I love technology. The thought of missing some amazing Christmas morning memories was just too much for Matt, so he ordered us a new video camera today! Hopefully we will be able to share some videos with you soon!
Here is a picture of the kids at snack time today. They are each toting their “friends” with them. They also got haircuts this morning so they look a little less like hobo children:)
Holding up their friends for all to see!
Cara and Baby Bear
Eli and you know who!
Allie and Pluto. She sleeps with him, drags him around the house all day, and pretty much adores him more than just about anything!
Brady and his Elmo!
I’m heading upstairs to finish up wrapping! This whole “little bit everyday” philosophy has turned our bedroom into a giant pile of gifts, wrapping paper, scotch tape…but who cares? I LOVE Christmas!
Tuesday, December 15, 2009
I again want to thank all of you who reached out to send this family $1 to help raise funds for MIBG therapy for Kyler. :)
Christmas is next week! Our family has an especially exciting time during Christmas. My sister, her husband, and her two boys come "home" every year from Minnesota. Although they stay with my mom, we see them every day while they are home (this year for 10 days). There will be lots of play among cousins, laughs, and just wonderful family memories. They arrive next Wednesday the 23rd, which is also my birthday:) Can't wait!!!
Monday, December 14, 2009
The kids are getting into Christmas carols. They ask me to sing them all day long! They love Silent Night, O Holy Night, and of course some less sacred favorites like Rudolph and Frosty.
Today the kids started taking about Rudolph the Red-Nosed Reindeer during lunch. This is what ensued:
Who knew that a 2 year old brain and a side of BBQ sauce would lead to a dramatic interpretation of Rudolph. Real funny guys…
Sunday, December 13, 2009
There is an 8 year old boy who lives in Ohio who is dying of brain cancer. I heard about this boy from my father in law who somehow heard about him at work. He would like to receive Christmas cards to help lift his spirits during this time of year. Here is his information:
2415 Taylor Blair Rd
West Jefferson, OH 43162
Thank you all for sharing your Christmas joy with a precious boy. Just imagine if this was your child's last Christmas with you...
Wishing you all a blessed week
Saturday, December 12, 2009
So today, for the first time ever, our family was scattered in three different directions for the morning. Eli, Cara, and Brady went to the Christmas tree farm with Grandma and Grandpa, I went to run errands, and Matt stayed home with Allie. I promise I will get some pictures of the kids’ adventure! Grandpa pulled them on the sled to pick out a tree. Oh the stories they told me after their naps! “A big man came with a saw, cut it down, and it went boom!” “Grandpa pulled us fast over the bridge!” “He put the tree on top of the van mommy, ON TOP!” How fun! Santa was there too, and I was proud when Grandma told me that my little cherubs said “Thank you Santa” in unison after he gave them all candy canes. Of course they did, they are angels after all!
Speaking of angels, here are a few funny pictures I snapped today during a double time out! Cara is in time out 2-3 times a day, so it doesn’t bother her much (as evidenced by the look on her face in the following pictures). Eli is in time out maybe 1-2 times a month, and when it happens, it is completely devastating (as evidenced below). And Allie, she just thinks the whole thing is funny when her siblings are in timeout, so she toddlers over and sits down with them on the naughty mat!
Okay, so I have been sitting here laughing like crazy at this picture. Hilarious!!!
This next picture is for you Michelle (a faithful blog reader from Australia.) Here is a picture that I literally opened the door and took on Friday. You can see in the distance the wind whipping around in the field.
Less than two weeks until Christmas!!!
Friday, December 11, 2009
By far the best part of this year is sharing the true meaning of Christmas with my children. Sure they love to read stories about Santa and watch Rudolph on tv with me (and so do I!) but they are so eager to hear the wonderful story of Jesus' birth. And the best part is to hear their interpretation and telling of the story. Cara has renamed her baby doll Jesus and told me to call her Mary. She even said, "Mommy, you can be Joseph!" She dumped Allie's books out of her book basket, dumped baby Jesus in, and told me "Look Momma, Jesus in the danger (instead of manger." And perhaps the funniest thing they say is in regards to the three wise men bringing frankincense to the Jesus. When I say the word frankincense, they instantly reply, "Frank...where's Frank!?!" We know a few Franks, so I think they are looking for Frank in the picture!
This weekend is a pretty quiet one around here. The kids are going with Grandma and Grandpa to get their Christmas tree and see Santa. I hope your weekend is a wonderful one!
Thursday, December 10, 2009
I had my sweet Eli with me today though (I thanked God an extra dozen times for you today buddy). If I ask something, Eli does it. When I speak, he responds politely. Did I mention the many unsolicited, "I love you mommy's?"
Then there is sneaky Brady. The boy wants to carry his blankie around with him all day. We have asked him to keep it in his crib as he ends up dragging it around, leaving it somewhere, and then someone else trips on it. He whined, he cried, he begged, he pleaded...then he snuck into his room, moved his crib, and slithered along the wall to retrieve the blanket that I so cleverly (or so I thought) placed at the farthest-most corner of the crib. Sneaky...Then I walked into the kitchen and saw Brady, hands behind his back, looking me right in the eyes (guilty eyes I add), turning his body as he maneuvers by me, so that I can't see behind him. I caught on to the fact that he is hiding something, and was shocked that he knew how to hide something and almost is getting away with it. I found a few diapers behind his back and followed him into Allie's room where for some strange reason he and Eli were stockpiling diapers and using them to build "towers."
Naughty. Cara is a sweet pea 75% of the time. But then...she reaches up and open my laptop and pretends to type on the keys. And then there is the throwing of the toys...how they keep ending up hitting Allie in the head is starting to make me think that perhaps she has really good aim, and really bad intentions. A little too naughty today...
And Allie is my spunky girl. I think of spunky as sweet and silly with a touch of naughty thrown in. She is climbing into her rocking chair and then standing up and laughing at me. She is currently growing lots of new teeth in that cute little mouth which causes her to come up and bite on my leg several times a day. And the touching of the Christmas tree...don't get me started. She didn't realize that we had a tree the first whole week it was up, but now...
You all know how much I adore these kids, and of course my descriptions don't mean that this is who they are everyday. Just like it's not everyday that I'm a mom who dragged kids to timeout all day, drank a few too many cups of coffee, and was counting the minutes until daddy got home. That was just me today:)
PS--for my out of towners: Yes, all of my friends (except my poor sister in law) had a snow day today! And yes, my mom is safely on her way to Indiana, although it was a pretty rough start at 6am through ice, wind, and snow!
Wednesday, December 9, 2009
So I didn't get around to any wrapping today. Not yet, at least. Somehow the demands of caring for my 4 very needy children prevented me from doing so. Well that and the dust that was really starting to get to me on the tables.
I have to tell you all that right now, at 8:30pm, it's 34 degrees outside, with winds gusting at around 40mph, my husband is outside taking a screen out of the sunroom windows. What a guy...
That's all for tonight! Please keep my mom in your prayers as she will be leaving very early tomorrow morning and returning late Friday night.
Tuesday, December 8, 2009
We had our MOPS Christmas party tonight and it was such a great evening. My brother and I got to sing together for the entertainment. We have sung together many, many times in the last 15 or so years, but don't get the chance to much anymore. It was a true blessing to share our music with the ladies at MOPS.
Well, tomorrow my gift wrapping starts. Lots and lots of wrapping needs to be done!!!
It's beginning to look a lot like Christmas:)
P.S. I don't know how many of you read the comments section of the blog, but in the last months I've been humbled by some of the people who have been stopping by and commenting. A few months back Lynn Eib left a comment saying she stumbled upon our blog and was so glad that I have enjoyed her books When God and Cancer Meet and Finding Light in Cancer's Shadow. Just the other day the founder of the Arms Wide Open Cancer Foundation stopped by. And then yesterday Jay Scott, founder of Alex's Lemonade Stand (Alex's dad) commented on Brady's good HVA VMA results! It is so incredible how simple words on a computer can connect people so easily! And of course---all of you regular readers are just as important to me! Your support has gotten us through our darkest days! Thanks to all!
Monday, December 7, 2009
The oncologist called today. I emailed him 20 minutes earlier to inquire about the results of Brady urine test.
Both HVA and VMA are well within normal limits! This is the first time since diagnosis that both levels have been normal. Last time one of them was still one point above. If you remember these are the urine markers for NB. What a great way to start the Christmas season!!!
This gives us a little bit more confidence that things will look okay for next months scans, but of course you never know with Neuroblastoma.
Something to be praying about: There is a spot on Brady's back, to the right of his spine way up high on his back, where a noticable area has started protruding. It's hard to explain, but unfortunately might indicate that some spinal deformity is starting. If you remember, Brady's initial spinal surgery last Januray left his spine at risk for deformity. We have a follow up appointment with the orthopedic doctor in January, so we will know more then. We are praying that God will keep Brady's spine straight and that he will continue to grow big and strong:)
Sunday, December 6, 2009
Just imagine, all 6 of us, crammed in the trusty blue mini van for 4 hours today! The kids were really good today, well until the ride home. We spent all afternoon at Matt's cousin's home in Penn Yan. We had a lovely Christmas celebration with lots of kids running around and playing. I was very proud of my brood who interacted quite appropriately, weren't shy at all, and even managed to say thank you when prompted. We knew we couldn't make it home without stopping to feed the kids, so we hit the Mc Donalds in Canandaigua. At this point, Allie was in pajamas, the big kids were all still dressed up, so I'm sure we looked pretty strange. There we were with our 4 high chairs, eating chicken nuggets together. We we got back on the road it was certainly an annoying ride home. Brady whining, Cara crying, Eli snoozing, and Matt and I wondering when Allie would throw up! Great news---she didn't throw up today! She slept almost the whole way there, she started to not look so good with about 20 minutes left, but we made it just in time. Then it was dark on the way home, and somehow I think not being able to see things out of the window helped her vestibular system not get out of whack.
This week brings baking, wrapping, MOPS party, a dinner with a great friend, and maybe a few other adventures. I LOVE Christmas time!
Saturday, December 5, 2009
Allie was just a few weeks old. I remember still being in pain from my c-section, worried about what clothes I would fit into, worried about leaving her for the evening.
Brady was a 19 month old boy who wasn't walking. He was having trouble pulling up like he used to be able to do. He was pretty clingy and the feeling in my heart that something was wrong started nagging me more and more.
We were only weeks away from the appointment with the developmental specialist where we would find out that Brady had cerebral palsy and would never gain typical motor skills, and might never walk. As you know this diagnosis was wrong, and as God knew, there was something much more serious happening in his tiny body.
One year...I'm sure I'll be talking a lot in the next months about where we were one year ago. I guess I do this because it is somewhat therapeutic for me. I can't say that the events in the last year haven't traumatized me in some way, they have. BUt I also want to remember because I want to share the beauty that God has made from the ashes that covered our lives one year ago.
There is a beautiful passage from scripture in Isaiah 61 about how God wants to restore our broken hearts, bring us back to a place of peace when we are hurting, and comfort us in times of despair. So when I look back at our year and describe what we were experiencing and feeling, I hope that I am showing you how God has done all of those things for our family.
Having a child diagnosed with a disease that is more often deadly than survivable is the scariest thing that has ever happened to me. But seeing the beauty God has created in our lives since that day is the most remarkable thing that I've ever experienced. We all have a new appreciation for life, a stronger connection to God and each other, and certainly a powerful story to tell.
To console those who mourn in Zion,
To give them beauty for ashes,
The oil of joy for mourning,
The garment of praise for the spirit of heaviness;
That they may be called trees of righteousness,
The planting of the LORD, that He may be glorified.”
Friday, December 4, 2009
With the bustle of this season, it's so easy to get caught up in it all and forget the focus that should be in our hearts. I find that my children are wonderful reminders for me about the true reason for celebration at Christmas. Sure they are SO intrigued by Santa this year, the love looking at the tree, and they are getting excited about presents. But there have been so many special moments when they climb into my lap with one of their Christmas story books and want me to read it to them. It is so precious to share with them the story of Jesus' birth. They just adore the story of Mary and Joseph, Jesus being born among the animals, and how the wisemen followed the star to Bethlehem. It's wonderful to see God opening their hearts to want to learn the most important story ever told!
Amidst the craziness, I pray that you'll find quiet moments to reflect on the importance of the Christmas season.
Thursday, December 3, 2009
I want to say thank you to everyone who is reaching out to help Kyler Van Nocker and his family. I don’t think this family has a carepage, caringbridge site, or blog. Their story was first told by a local reporter in Philadelphia and is spreading on the web and on other pediatric cancer blogs. I did read today that Medicaid (the family must have picked up secondary insurance for Kyler) might have covered their first treatment. But the bottom line is, this family has depleted their savings and all assets to try and find a cure. Thank you to all who have given $1 to help this family during a time of unimaginable stress and grief.
It’s picture day! I’ve had some fantastic pictures to share with you. On Wednesday my mom and I took the kids to visit Santa at the mall. We have never done this before and of course the many different personalities among the kids made for an interesting time!
When we got to the mall, Santa wasn’t there yet. Don’t they know this mother went online, checked the Santa times at the mall, and arrived at 11:08 to see Santa who was supposed to start at 11? We had some time to waste so we took the kids to Friendly’s for lunch. They were SO well behaved. Many people came up to us to tell us how wonderful they were throughout the meal. I was a proud momma:)
Finally, we saw Santa sitting in front of his house in the distance. It turned out to be perfect timing, as their were no other kids in line. We had him all to ourselves for about 30 minutes! After I politely declined the photo package for $45.00, I took out the camera and got some great shots!
Here is Mr.. Friendly Eli who walked right up and made friends with Santa instantly. Throughout the whole visit he was mumbling under his breath about “trains, cars, Snuffy, big rigs, puzzles,….”
This Santa was the kindest, most gentle and patient man! He called each of my kids by name after hearing me say their names one time.
So that was Eli, now here are the other two scaredy-cats who huddled together back by the photographers. They look like they are in a lineup!
So, I decided to plunk Allie on Santa’s lap. I present the classic 1 year old with Santa picture….
Santa had this bouncy ball that he called his Snow Ball. It really helped break the ice with Brady and Cara.
This is as close as Brady ever got to Santa. Of course, he has nothing but rave reviews when you ask him about his Santa experience!
And here is my Cara with one of the most lovely Santa pictures I’ve ever seen:)
I decided to try and squeeze all 4 monkeys in the tub tonight, and boy, I’m SO glad I did. If only I hadn’t just sent my Christmas cards out today, I seriously would have found a way for these pictures into a Christmas greeting!
Wednesday, December 2, 2009
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.
From Megan: I know that this time of year we are getting hit in all directions to donate to SO many charities. A lot of times you don't know where your money goes, or how much of it is actually used to meet a specific need versus administrative costs. I can tell you that a small donation to this family will be a meaningful and powerful act of love that will be used to help save this child's life. There are SO many children who are alive today after having received 3F8 treatment. It frustrates me that the FDA hasn't approved this, but the main reason is because only 4% of money allotted by our government to cancer research goes to pediatric cancer!!! Only 4%!!! That means that 96% of cancer funding for research and life saving treatments is for adults! Obviously both are more than worthy causes, but the disparity has an obvious effect on the number of apporved treatments available for children.
If you are willing to give, even just $1, please do. I would love for you to leave us a comment and let us know! Thank you SO very much!
Tuesday, December 1, 2009
I delivered "the sample" to the hospital today without any problem. I will be emailing our doctor at the beginning of next week to check on results. Of course clear results will give us a big sigh of relief, well at least until next month's scans.
Matt sprained his ankle last night playing basketball. Mr. Tough Guy doesn't complain much and tells me it feels "great," but looking at the swelling and bruising, I'm sure it hurts more than he lets on.
Allie got another tooth today which brings her total to 5! She is a drooly mess these days, but really is a good girl about it.
We had our first dinner tonight using the beef that we purchased last week. We split 1/2 a cow with Matt's parents. It was raised organically and slaughtered locally. We have a ton of beef in our freezer which we will use all winter. Tonight's menu was beef stew with veggies...yum!
The first measurable snow fell today. I have to say it was really pretty to wake up to the ground, trees, and rooftops covered in snow. Of course the kids saw this and thought they should spend the rest of the day wearing their mittens in the house...goofballs!
That is it for my nothing much day! I prefer these sort of days to the chaotic, crisis-filled ones:)
Monday, November 30, 2009
Because Brady isn't potty trained, collecting his urine is very tough. It involves sticking a bag to him and hoping that when he pees it goes in the bag. He hates this process (who wouldn't?) so we always try and do it while he is under anesthesia. As I carried him into the nursery to explain things to him, it hit me. This Brady is a VERY different Brady than he was months ago when we needed to do "procedures" every day. Back then, he was still a "baby." There wasn't a lot of explaining that needed to be done. Mostly we just had to distract him and console him when something hurt. Well, I realized as I looked at him, that he is so much more aware of his world, understands when something not normal is going on, and needs a lot more than just distraction to comply with something like this. I quickly told him that Dr. Korones called and told me that he needed to have some of his pee pee so that he could make sure everything is okay. He looked at me like I had three heads, and then I showed him the bag. He instantly got upset, almost like he remembered the look of sterile packages and those types of things. I was able to talk him down and promised him it wouldn't hurt. We got the bag on and about an hour later when I checked, he had a good sample in there. When I went to put it in the sterile cup, Brady REALLY looked at me like I had three heads. He sees me putting pee into a cup, then looks at me and says, "Dr. Korones not drink pee pee in the cup!" Oh Brady, mommy just about dropped it and ruined everything!
All afternoon I thought about this whole scenario. It was really no big deal, but yet, it just dragged my heart right back into the days of harder times. But just as fast as I started feeling awful about what we have been through, I thought of how blessed I am. Thank you God that all I had to do today was collect pee from my child. Thank you God that I didn't have to flush a Broviac coming out of his chest, or change a dressing that ripped at his skin, or watch as nurses pull out a chest tube from his tiny body. Thank you God that it wasn't the day that chemo dripped into his body as I sat and watched, and thank you God that tomorrow will be as normal as today was for my boy.
There are SO many families dealing with those realities today. And I say this not to sound condescending, but you have NO idea how awful it is until you have to deal with it. I don't even know the horror of some families who have lived this life for years. And there are families out there doing these things every day with the full knowledge that the cancer is not going away.
As the CHRISTmas season begins, I feel so differently about things this year. Just to have us all here, in this house, brings me the greatest joy. I'm so blessed to share the wonder and miracle of CHRISTmas with my children. Matt and I say everyday how excited we are about this year.
Thank for listening to my ramblings tonight. I'm so glad to have a place to share my feelings as I continue on this journey...
Sunday, November 29, 2009
The kids goofing around with Grandpa
We got the kids adorable Polar Bear cookies while in Syracuse. They loved them!