I wanted to share something that I read on another NB warrior's site. I mentioned Eric the other day and ask that you would keep him, his mother Donna, and his whole family in your prayers. I read this amazing quote on his site today and it has been on my mind ever since:
Sunday, January 31, 2010
I wanted to share something that I read on another NB warrior's site. I mentioned Eric the other day and ask that you would keep him, his mother Donna, and his whole family in your prayers. I read this amazing quote on his site today and it has been on my mind ever since:
Saturday, January 30, 2010
I can't believe that my 3 will be 3 in less than 3 months! That's a lot of 3's!!! They are getting SO big and SO smart and SO sassy and SO...I'll stop there. They are certainly a mix of delightful and impossible:) Let the party planning begin!
Friday, January 29, 2010
When Brady was first diagnosed, we were the new kids on the block. I remember so well the amazing people that reached out immediately to help us. Three people in particular were Donna, Ellen, and Aaron. Each of them will always hold a special place in my heart and each of their precious children are always in my prayers. Donna's son Eric is in his 20's (only a handful of NB patients are in this age group) and his story is unbelievable, and his faith is awe-inspiring. He is graciously and bravely facing the end of his battle here on earth, and I'm inspired daily by the powerful perspective that he and his mom have. Ellen is a mom to triplets, one of whom had a very similar case of NB as Brady (he is now completely healthy!). She started a resource site for parents called The Loneliest Hour which is a great source of information for those dealing with a new diagnosis. Aaron is a dad who contacted me during the time we were planning our trip to NYC for surgery at Sloan Kettering. His son Eli is certainly on the top of my list of inspirational people! Aaron was a fantastic source of support and information as Eli has spent many, many months living away from their home in Iowa.
I've started a new section of the blog that you can check out in the right column. I can't quite figure out how to space it out correctly, but if you click on the names you can read about some fellow NB warriors who are close to our heart. I'll tell you that it isn't always uplifting to read about the challenges these precious kids are facing, but they need our prayers. Where would we be if our prayer warriors decided that it was just too sad to keep up with Brady's story?
Please be praying for me as I reach out to other families. It is hard to strike a balance between wanting to boldly tell others about the good, bad, and ugly of our experience and also be sensitive to the fact that dealing with and understanding NB is a process. While I'm certainly no expert, I feel that God is leading me to share Brady's story not only to reach people on a spiritual level, but to help others navigate the medical journey as well.
A pretty quiet weekend for us...I hope it stays that way!
Thursday, January 28, 2010
Brady is becoming such a brave and tolerant boy. Today he allowed Dr. Korones to check him over without any complaint. Of course the "inside the diaper poking and prodding" made him quite mad, it always has. When it came time for the nurse to weigh and measure him, he hoped right at the scale and smiled. Then he stuck his arm out for his blood pressure. My scared little-lamb has really become quite sure of himself and he is quite able to perceive safe from scary situations.
Our big week is coming to a close and I couldn't be happier. Thank you for all of you who prayed, emailed, texted, called, and just make us feel so lifted up! Another victory for Brady:)
Wednesday, January 27, 2010
Dr. Sanders's office, the orthopedic surgeon we are seeing in March, called today to tell me that they had to push our appointment from the 2nd to the 17th. Dr. Sanders is going to help out in Haiti. While I think this is wonderful, I burst into tears on the phone with the secretary! I think all my worry and stress just came out on this poor woman. I told her that we were hoping that Brady would be a casting candidate and that we feel it is a race against time. She put me on hold, came back a few minutes later, and told me that we could come on March 4th. So, only a two day delay. I felt awful for the tears, but in the end, I think it got us an earlier appointment.
The next event of the day involved dear, sweet Cara Kathleen. This child has issues going to sleep without a few (dozen) reminders to lay down and be quiet. After her 2nd reminder at nap time today, everything was quiet and all was well....until....
I heard the loudest thud, followed by screams like I've never heard. I ran into the room knowing that she had fallen out onto the hard-wood floor. This has never happened in our house. Brady attempted to slither over the rail and onto the nearby changing table once, but that is the closest anyone has come to getting out. I found her face down and just sobbing. I wasn't sure what to do, so I just picked her up and held her.
Half of me wanted to scold her, the other half of me was terrified that she had broken her arm, her teeth, or cracker her head open. Her face definitely took the brunt of the fall. All of her limbs were fine. She has a baseball sized goose-egg and bruise on her forehead, a contusion on her cheek, and a scrape under her nose. She looks pretty rough and I know she was shaken up quite a bit.
Also during our day I attempted to bag Brady (which involves sticking this plastic bag thing to him and hoping that he pees into it without it falling out all over). It didn't work too well this time as most of his pee was in his diaper and the bag was falling off. I got the tiniest urine sample ever and am sure it isn't enough.
Tomorrow we have to leave at 8:30 to be on the road to Rochester for Brady's follow up appointment with the oncologist. Please keep us in your prayers as we are expected to have bad road conditions in the morning.
Did I mention how we continue to be on cloud 9 after Brady's great scan results? God is SO GOOD!
Tuesday, January 26, 2010
Now we will have to get a urine sample and get those results, but at this point we are breathing a HUGE sigh of relief!
Thank you for your prayers...now we can do some praising:)
ps..Brady is sleeping soundly and seems to be doing fine!
We worked with a wonderful anesthesiologist and Brady did not have any nausea. After about an hour or so he was maintaining a good oxygen level on his own and we could go home. We weren't able to get a urine sample, so I will be working on this at home sometime soon.
I have an email in to the oncologist to check for a preliminary report this afternoon. I'll update ASAP.
Monday, January 25, 2010
I did receive an amazing phone call today. The founder of the Infantile Scoliosis Outreach Program called me. This is a national organization founded by a mom whose daughter has scoliosis. Long story short, she was a wonderful wealth of knowledge and she wanted me to learn as much as possible about Early Treatment of Scoliosis using serial plaster casts. This is the method Matt and I have been reading about. She works with Dr. Mehta who founded this program. There are only a handful of doctors who do this procedure, two of whom being the doctor we saw a few weeks ago and the one we are seeing on March 2nd. This leads us to the biggest, most frustrating question...Why wasn't this option brought up to us at the last appointment? We just don't know..perhaps Brady isn't a good candidate for some reason? However many we have talked to, including the woman I talked with today, thinks that he is and that waiting and watching is a terrible idea and that it will lead us down the road to surgery being the only option. The serial casting method involves taking advantage of the pliable young spine and putting a hard cast around the body to guide the spine as it grows. I'm just beginning to read about the actual process and what goes along with it...and honestly, it scares me. I hate the idea of it and don't want to do it. But, if this is what has to be done to give Brady the best shot at a great life, then that is what we will do. (By the way--I think it is no accident that this woman called us today. Wasn't it just yesterday that I asked you all to be praying that God would give us a direction to go in for treating Brady's spinal problems?)
As we wait for our appointment on March 2nd, we just want to knock the doors down to find out the answers to the questions we have. Not too mention that the success of this casting method decreases the older the child gets, ideally the best ages are from 1-2. Brady turns 3 at the end of April, so it seems as though the race against time is on.
I'm going to try and take a deep breath and put all of this aside for tomorrow. Tomorrow's goal is to get a clear scan! We are leaving home around 7:15--arriving at 8:15--scan at 9:15. Please continue praying for Brady's safety and for continued health. And say a prayer that Matt and I will be ready to advocate for our boy! I have our to-do list ready for the nurses and anesthesiologists:
1. Use Propofol for anesthesia as Brady does the best with it.
2. Give Zofran during the scans to prevent Brady from being nauseous when he wakes up.
3. Don't forget to bag him to collect urine during the scans.
4. Don't forget to push the fluids during scans so that we can get a urine sample.
5. Don't forget to run the HVA/VMA test.
6. Don't forget to run blood work.
Seriously, we have to remind them of all of these things. So far, we have never had a scan day where all of the above happens. Someone always forgets or messes up something. Matt and I are ready for them tomorrow! I'll update as soon as we hear anything, probably later in the afternoon.
Sunday, January 24, 2010
I know by now that scans seem commonplace, and I guess the process for us is quite familiar. However, we have to remember that there is still risk involved. Brady will be put completely under anesthesia (I think this has to the 10th time by now!) and will have his thoracic spine and chest scanned. He will wake up with an IV and will have his blood and urine collected as well. We are working on trying to have a specific anesthesiologist work with us who we have had before. The last time we had a different one, who used different medicines despite us telling him what Brady had done well with in the past. Brady ended up waking up very nauseous and threw up at the hospital and on the way home. We are praying that we can get the anesthesiologist who worked with him in the past when things went well.
I'm also praying that our oncologist will have a preliminary report for us by the end of the day. Waiting stinks...so I hope to have GREAT NEWS sometime Tuesday afternoon. Of course we will have to wait a week or so for the blood/urine results. We have a follow up appointment on Thursday morning.
That is our plan for the week. I know it is easy to forget to pray for Brady considering how well he is doing, but please keep him in your prayers.
We are praying specifically for:
1. A clear scan report showing no change in that tiny area of Brady's spine and no new NB growth anywhere else.
2. Normal urine/blood results.
3. Brady to do well with anesthesia.
4. That some sort of intervention will be successful in treating Brady's scoliosis and kyphosis.
Thank you friends for keeping Brady in your prayers!!!
Saturday, January 23, 2010
Staying in your pjs, well, until it's time to put on a new pair for bed!
Dressing up like a princess and watching your favorite cartoons…
Snuggling up with your brother underneath your favorite fire truck blanket…
Dumping out all of your toys on the dining room floor…
Weekends are the best.
I received some great pictures in response to the January 21st project and want to share them with you today. Here are a few of the many who prayed for sweet Brady and our family.
One year ago today…click here
Friday, January 22, 2010
In the meantime Matt and I are continuing to reach out to doctors, some even outside of the United States, and try and see what the options are. I won't bore you with specifics, the gist of it is that there isn't a tried and true method for treating a spinal deformity like Brady's. So, we have to figure out the option that shows the most promise...and then we'll step up the prayers!
Tonight I wanted to share another email I received from someone I've never met. She is a fellow triplet mom who belongs to the same online community of Triplet Moms that I do. Her name is Kim and this is what she wrote:
Brady Boy's journey has changed the way I look at God. Before there was no possibility of God for me. I would not say that I am religious, but I am leaning more toward believing now, than not. At one point, I prayed to God, telling him that if he cured Brady of cancer, I would give God a chance. Well, I know that he's not really considered "cured" until 5 years pass but he doesn't have cancer now and that is good enough for me.
Brady's journey has also helped me to appreciate my kids more during the rough days that we sometimes encounter. I try to step back and tell myself that many people would give anything to be dealing with a frustrating toddler because that would mean their child was still here. I realize that my kids may not always be here. Anything can happen at any time.
I have fully embraced Brady over the past year. I feel a connection to this little boy and I have never met him. He is special to me. I cant put my finger on why. Of course he is brave and all that but he really didn't have a choice. And still every day I check the blog to see what is going on with the family.
Brady you are such a hero and you have touched so many lives!
Thursday, January 21, 2010
One of the biggest blessings in the past year has definitely been the countless ways our friends and family have supported us. Do you remember that we had dinner delivered to our home 4 nights a week for 4 months! We do, it was a tremendous blessing to our family. Do you remember the fundraisers that were put together that helped us to pay our bills and pay for expenses when Matt was missing so much work? We do! I'm so grateful for the hundreds of cards of support we received for months...sometimes reading them was the only joy in my day. There were friends that came from hundreds of miles away to help out. Perfect strangers sent us care packages to help bring a smile to all of the kids. I tried to keep up with thank you cards throughout the whole process...writing 10-15 a day at times. I hope I didn't forget anyone, but am sure that I did.
So...to all of you that did something to help our family during the worst of times...
I'm going to keep sharing some of the emails I've received for the January 21st project. My goal is to get a digital scrapbook made in the next month or so, and of course I'll share it with you all when it is done.
Here is a great email I received from someone I've never met, but she touched my heart just the same...
My step-sister e-mailed me and asked me to log onto this blog and pray for some kid named Brady. Yeah - right - I have enough to deal with in my life without adding praying to it. For some unknown reason - I did log on and started to read...and pray (for the first time in a very long time). I started to log on to the blog every morning before I started work and felt as though I was a part of everything that was happening. I would find myself praying while driving, asking God to watch over your family and to help you accept whatever He deemed was necessary. I have a husband who has Alzheimer's, I work two jobs and I have more stress in my life than I would like, but because of Brady and your blog, I am learning to let go and let God. If I have a bad day, I log on and scroll through and read of your courage and belief and know I can keep going. Thank you for sharing your pain and joys, and your incredible belief.
Thanks again Kathy for your email and for your prayers even though you are dealing with so much in your own life. I'm so glad that Brady's story gave you a chance to pray...
Wednesday, January 20, 2010
This whole Steps for Brady has been going on for a year. It all started because I needed to write, to think out loud, to record, to remember, and to reach out for prayers. In return our family has been supported by the comments of faithful readers, encouraged during hard times, and now through this project we have been shown that this whole experience is so much more meaningful than a blog about Brady. The true impact of the past year extends beyond our family and into the hearts of those who have prayed. It is a God-thing...for sure.
I've received somewhere around 25 emails. It's been a busy few days and I've spent a lot of my free time returning emails and of course working on getting answers to Brady's spine issues. I want to share some of what I've received, but am realizing that to share all of it here would be too much. I can't wait to put all of the messages into a keepsake book for our family. And over the next few days I'm going to include bits and pieces of the wonderful messages we've received. I really admire all of you who courageously wrote to us in very personal and honest ways. I'm praying that the stories I'll be sharing
To start off the Jan21st project, I want to share some words written to me by a very good friend of mine. She herself is a cancer survivor, and what she wrote is different than anything I've ever considered when thinking about cancer. After I read this, Matt and I literally sat speechless and overwhelmed with emotion. Amazing stuff...
You can’t experience cancer and not be changed.
If you have been touched by cancer, you have been given the opportunity to truly know what it means to live and be alive.
Make a list. Write down all the positives and all the negatives of the experience.
Tuesday, January 19, 2010
To say that this didn't sit well with Matt and I is a huge understatement. If there is one lesson about having health issues that I hope people remember from Brady's story it is this: Always rethink what you are told by doctors. Most of the time they are right about things, but some of the time they don't know it all. It is okay to question authority...it is okay to seek out a 2nd opinion...take advantage of the internet and read everything you can. We are continually amazed by the information out there waiting to be found.
Matt has been reading many, many studies about scoliosis and kyphosis. We are still finding no studies about kids like Brady, there just aren't any out there. So, we have focused on studies dealing with children who have structural scoliosis, which means it is not a birth defect---he is developing this condition because the surgery caused instability. There is even less info out there about pediatric kyphosis. Matt decided to email a couple of experts including one chiropractor and two PTs, all from different parts of the country. He had read some promising studies about bracing and casting. We immediately got responses from all of them, two of them even calling us on the phone.
One wonderfully kind and approachable chiropractor from Massachusetts called us last night and told us that he wanted to help. Although he said that Brady could not be a candidate for his specific type of therapy, he wanted to try and help us find someone else who could give us answers. He contacted two doctors, one in Arizona and one in Germany, both considered leaders in the field of pediatric scoliosis. Their names are all over the research and are certainly considered cutting edge. He promised me last night that he would contact them and get back to us in a few days or so. Well, he called us at home again tonight. The doctor in Germany had never worked with a child like Brady, his only idea was some technique that is only used in Europe. The expert in Arizona recommended a casting technique. Basically, under anesthesia the doctor's manipulate the spine into a better position, and then cast it into that position. Then the casts a changed every 3-4 months to accommodate growing. Again, this process has shown promise with scoliosis, and not specifically the degree of instability Brady has.
Now here is the kicker...there are a handful of doctors that do this in United States. One of them being....the Orthopedic Doctor we have been seeing!!!! I have NO idea why this option was not even discussed last week. We weren't aware of it at that point, and now feel like we have literally gone in a circle this week only to lead us back to where we started. The wonderful doctor in Mass. is going to continue checking into a few things for us, including putting us in touch with pioneer of this casting technique, the woman who trained our doctor in Rochester.
Here is where we are: We have an appointment set up for March 2nd to see the OTHER orthopedic doctor within the practice in Rochester. He works very closely with the doctor we have been seeing, and he also does the casting procedure. My pediatrician suggested we try him as he is very approachable, friendly, and positive. We are trying really hard to get into this appointment sooner as 1 1/2 months seems way too long when we are talking about Brady's spine.
We really need your prayers! We feel like we are out on a limb again, snubbing our nose at the advice we have been giving. However God gave us this boy and we are going to do everything, absolutely everything, to make sure he gets whatever help he needs to live his best life. Please join us in praying:
That God will lead us to just the right person that will have an idea for how best to treat Brady.
That whatever intervention we try will be successful and as minimally invasive as possible.
That precious Brady will not suffer during this process and that he will continue to thrive!
That Matt and I will stay strong physically, spiritually, and emotionally as we continue to advocate and research on behalf of Brady.
That our doctors here at home will keep an open mind and not be too entirely offended that we have done all of this behind their backs (lots of prayer here ;)
Oh, and one last day to email me if you want to be included in the January 21st project. Anything you want to share would be great!
Monday, January 18, 2010
She was out shopping that day with her husband Bob, later he told me they were shopping for warm sleepers for my kids. You see, Grandma always hounded me that my house, and therefore my children, were freezing! She had even gone to stores looking for electric blankets that would fit cribs. Oh Grandma! I guess I could understand why she felt that way, since every time we went to her house I was sweating like crazy within 5 minutes. After shopping that day, she and Bob had dinner and then were sitting at the table when she had a massive stroke. By the time Mom and I got to the hospital she was gone, but being kept alive on a ventilator. I was just shocked, totally shocked to lose someone I loved so quickly. We held her hands and let her go, still unable to comprehend what had happened. As we consoled Bob and tried to figure out what in the world to do next, I remember being so upset because Brady's big scan appointment was the coming Wednesday. How could I possibly handle going to that appointment after just losing my grandma? I remember my mom assuring me that I had to keep it, Grandma would want me to.
The next few days were a blur of grieving, planning, sorting through pictures...all the while my anxiety about Brady remained. I knew we would be getting the confirmation that he did in fact have CP at this appointment that week. I think we had settled that Grandma's memorial service would be at the end of the week.
Well Wednesday came, and you know how the story went. All of a sudden my heart was thrust into an unimaginable place where I could no longer feel the sadness over losing my Grandma because I was in shock, utter shock, about Brady's diagnosis. I don't think I'll ever live another week like that one. I honestly just started hyperventilating from the moment we found out until about 24 hours later when I finally called my doctor to give me something to help me breathe and function. Those next days were such a complete blur. It was a critical time for Brady after that first surgery, and we were being completely immersed into the world of Neuroblastoma. I remember the burning feeling in my eyes, from exhaustion and total grief. My family decided to push the memorial service back to Sunday so that my sister could get into town and I could try and come.
There was a lot of discussion about whether or not I should go. I wanted to go and I felt I needed to go. I remember just sitting in the pew that day, feeling the sadness that I would never see my Grandma again on this Earth, but then quickly feeling the most awful sense of fear about Brady. I didn't get up to speak about Grandma as everyone else in the family did. I just couldn't, I wasn't even thinking clearly.
The enormity of that week didn't allow me to truly grieve for Grandma. In my heart, it wasn't about her that day, it just couldn't be. I felt terrible about that, but didn't know how to feel both things at once. So my mourning has taken place in the quiet moments throughout the past year when I think of Grandma, realize she isn't here, and miss her so very much. She was truly unforgettable...
When I see the white tea pot with tiny purple flowers that she gave me, I think of my grandma.
When mom and I tried to recreate her famous peppery Thanksgiving stuffing, I thought of her.
When I try and fill a spot in my home with just the right thing, I think of Grandma and her amazing decorating talents.
As I wrapped Christmas gifts this year, I thought of Grandma and her gorgeous gifts that we always wrapped perfectly.
When I bounce a ball with my kids, I remember my ever-spry Grandma bouncing a ball, swinging her leg over it, and singing "One, Two, Three, O-Larry!"
Whenever I see a ballroom dancer, I think of Grandma and Bob and how they stole the show on the dancefloor wherever they went!
I think of Grandma's amazing generosity and how she gave to me in such meaningful ways.
When I see the love my mom has for me and my children, I think about the legacy of love that she gave to our family.
I truly miss you Grandma. I'm sorry I didn't get a chance to say these things out loud before. I pray that someday my kids will read this and know that they had a Great-Grandma who was loved and that loved them so much.
Sunday, January 17, 2010
For me I think a lot of the difficult emotions from that day and the ones that followed are brought to the surface at certain times. When I go to Strong Hospital for Brady's scans every three months, when I walk by "the room" where we were told the word cancer, when I sit in the same rocking chair in the MRI recovery area as I held him in for hours as we waited to find out what we would face next...there are just painful emotions attached to those places. I guess the same is true for the upcoming week on the calendar. Those emotions are just attached to January 21st and beyond.
That is why I came up with the idea for the January 21st project. I wanted to somehow dispel some of those feelings and replace them with something positive. By sharing the many ways in which Brady's story has touched others, I am hopefully that our family will try and remember the good that has come out of this terrible experience. With just 4 days to go, I hope that if you still want to contribute your thoughts, you will email me at email@example.com. Some have told me how they heard about Brady and why they felt led to pray for him. Others have shared that praying for Brady has renewed their relationship with God. It has been wonderful to "meet" people whom I didn't even know where reading. I feel like we have a bunch of new friends out there who are on our team cheering for Brady right along with us!
I'm really looking forward to sharing all of the uplifting stories that have been sent to us. I'm praying that they bless your heart as much as they have mine.
Saturday, January 16, 2010
Last year at this time Matt and I were furiously researching everything about Cerebral Palsy. After all, that is what the doctor told us Brady had. We were just trying to use the time inbetween that appointment, and the scan date to confirm it, as wisely as we could. We had found a treatment for cerebral palsy that only a few centers in the US were doing, and we were brainstorming ways to raise the $20,000 it would cost to pay for it. We were on EBAY looking for used hyperbaric oxygen chambers that we could buy because several cutting edge studies had shown that oxygen therapy can improve muscle spasticity. We didn't share these ideas with many people, but we were willing, and making serious plans to do whatever it took and go wherever we had to go to get Brady the best help possible.
12 months later...obviously our plan changed drastically. As my best friend put it the other day, we climbed the mountain and now face a few hills in our path. With Brady's spine starting to change, we again find ourselves searching, reading, emailing, and just looking for the best possible options. All the while we are praying that God would lead us to a treatment, if there is one. So although the circumstance this time is much different than last, I feel exactly the same way as I did then. I feel frustrated that there aren't more answers out there, scared by the prognosis, and most of all sad that my precious boy will be affected by something like this.
BUT---there is something very different about this year, than last. This year I know that God is carrying us as we walk down this new winding path in our lives. Sure, I knew God was with me last year, but I truly didn't understand the amazing ways in which God could bring me to my knees, allow my heart to break, but then masterfully piece it back together again. The sense of security that I have this year that God is going work all things to His glory has been made so much stronger because of the events of this past year. The remarkable way in which Brady's diagnosis came about, his amazing recovery, God's never-ending provision for our family, and certainly the beautiful words many of you have been sharing with me through your email all are living testimonies to the ways in which our circumstance has been used for good.
You all know me well by now...I get down, I get mad, I get scared (probably way more than most) but I'm learning more and more to trust God in all things---even the sad, frustrating, and scary things of life!
in all your ways acknowledge Hm,
Friday, January 15, 2010
This week in our life….
Eli played helicopter wearing his fireman hat that is held together by packing and duct tape.
Allie charmed us all with her cutie smile!
Daddy showed the big kids how to use a drill…
My Christmas cactus bloomed for the first time in many years. I think it was a few weeks late quite purposefully, just to make me smile!
Someone got pulled over, arrested, and his car got towed right in front of our house. Instant entertainment for at least 45 minutes…
A few days later, we had a massive part of our front yard dug. More free entertainment…Does this count as homeschooling?
The big kids in our house played for hours on end together and have starting saying precious things like, “Brady’s my best buddy!” (said by Eli)
Thursday, January 14, 2010
The surgery that was performed was called a laminectomy. The surgeon made an incision directly over the spine, and entered the spinal column by removing the lamina from each of the vertebrae from T2-T7. This is not a terribly uncommon surgery for adults with spine problems, but usually one or two levels are removed, not 5. Here is a diagram of the lamina. I think of lamina as the walls around the spine that keep it straight and supported as it grows.
So, with five of these "supports" missing from Brady's spine, as it grows, it is bending and curving without a structure to keep it straight. Here is a picture of a kyphotic spine. Brady's "hump" is more on the right side, the side where his surgery was performed.
That is my version of Brady's spinal issues. He is also at risk for a significant scoliosis, but so far, that curve is not as severe. Matt and I are diving into research and scouring the internet for information. It won't surprise you that we aren't just accepting the "there is nothing we can do" response. This may turn out to be true, but with a ton of prayer, lots of reading, and consulting as many other professionals as we can, we are trusting that God will lead us to an answer if there is one out there!
There is just one week to go until Brady's 1 year anniversary. I didn't realize this when I started it, but the January 21st project has given me so much encouragement, beyond what I thought I needed. Imagine how all of the amazing stories, testimonies, and pictures will help Brady stay strong and never to give up hope when he reads them some day!
Wednesday, January 13, 2010
The doctor we have been seeing told me that although he understands why I wanted to bring Brady in today, he doesn't want to see him again for 6 months (we will be seeing a different doctor in 6 months), because frankly, there isn't much to do about this problem. Yes there are braces, casting, and even surgical approaches for scoliosis. However, to do any of these to the growing spine brings about other problems and also does not address the biggest issue, the kyphosis (humpback). So his opinion is that we wait, and see what happens in the next 6 months.
This is not easy to swallow for Matt and I. How do we just sit back and watch his spine permanently curve more and more with each day? I made it clear to the doctor that we are willing to go anywhere and research any intervention that may be cutting edge. He simply told me that there just isn't much that can be done to intervene or prevent this. Furthermore, there isn't research that reports long-term outcomes of surgery's like Brady's...it just isn't common.
So. Here we are again. Another great big reminder that we, or course, are not in control. I would be lying if I told you that I wasn't crushed that God is not answering this prayer of mine. Every night I pray over the kids, and one of my prayers for Brady has consistently been for God to spare him from a spinal deformity. I wanted to protect him from having a life-long problem like this and the pain, limitations, and frustration that will come from it. The reality of the long term effects of pediatric cancer is often overlooked when a child survives. The facts are that most survivors experience negative effects from surgical intervention, long term effect from chemotherapy, and sometimes secondary cancers. It is such a battle to balance the feelings of "I should just be happy that God has brought us this far" with the feelings of "Brady deserves only the best from here on out." It will take me some time for sure, but I'm praying that God restores my spirit and sees Brady through this as He has so faithfully done.
On a lighter note, I couldn't have asked more of Brady today. We started our morning at PT and he did a fantastic job. He did all that was asked of him, showed a ton of improvement with independent jumping, and couldn't have been sweeter as he interacted with Linda. We had some time to kill before the next appointment, so we went to breakfast at Perkins. Brady was a total gentleman and I made his day by ordering him pancakes complete with sprinkles. I actually had to cut him off because we had to get to the doctor, or else I think he would have cleaned his plate! At the appointment they started off by doing the XRAYS. He has to stand up while having them done. In the past I have had to wear the protective apron-thing because Brady needed me to stand with him and comfort him during the XRAY. Today the tech asked me how many times I had been with Brady during a scan. I honestly couldn't remember, and she next reminded me that I was also absorbing the radiation each time, so she suggested that I should stand behind the protective glass. For a split second I thought "I can't, Brady will get upset," but I remembered that he has come so far recently with his level of comfort and trust. So I told him I would be watching him through the window and....HE DID IT! No tears at all. This was the first time I cried today:)
Thanks for letting me get this all out...here in my little free-therapy-zone! I'm really down, I'm worried, I'm discouraged, but my faith isn't lost;)
Tuesday, January 12, 2010
Cara, unlike Eli my official "shopping buddy," is not as content to sit in a stroller while mommy shops. She wants to touch everything, she doesn't want me to look at clothes that aren't pink, and she isn't as patient as we wait in line. But, she IS Cara. A sweetie pie who just wants mommy's attention, wants to do what mommy does, and likes to be in charge of the fun. I was so happy to share today with her. And nothing is sweeter than watching her take care of her baby doll throughout the day. When we got home tonight, she played with her baby doll by putting her in the doll stroller and saying, "My baby is all done shopping. She wants to go home!"
Tomorrow Brady and I have to leave the house at 7:30 to get to PT by 8:30. Then we have to be to the orthopedic doctor at 11am. Please keep Brady in prayer as he really struggles with physical exams. He will also probably need to do XRAYS of his spine, and that is stressful for him.
I promise pictures tomorrow!
Don't forget the January 21st project! Only 8 days to go...
Monday, January 11, 2010
Tomorrow is Cara's 3 month post-op appointment with the eye specialist. If you remember she had eye surgery in October to hopefully correct the head tilting she had been doing since about 1 year of age. We were very pleased to see a big improvement right after the surgery and in the month of November. Unfortunately, the head titling has slowly become prominent again. The fact that we saw am improvement right way confirms that this is not just a bad habit. There is something wrong with her vision that leads her to tilt and turn her head when looking into the distance. She only wants to use her right eye.
So tomorrow we go back to the eye doctor to discuss this. Ughh...I really hate the whole "mystery diagnosis" game. I'm praying that he has an explanation for this and a plan to make it better. I do remember him telling me that sometimes the surgery needs to be repeated. Double ughh...Please join us in praying for a resolution to this problem. These are her only eyes for the rest of her life and I really want to get to the bottom of this in the least invasive way possible.
The highlight of the day will be after her appointment. We will be doing "girly things" as Cara calls them. We are going to the mall for a bit and out to lunch. She's so excited, little does she know that I'm even more excited! I LOVE giving her all the one on one attention she deserves and that is hard to come by around here!
Remember...we would love to hear from you as we approach Brady's 1 year cancer anniversary. Click here to read about the January 21st project.
Sunday, January 10, 2010
Of course I would love to hear from many, many more! I guess I always thought people were reading that we didn't know, but I'm so happy to know that those people are still reading and have really come to care about our family. We feel so blessed to be able to share the story of how cancer has affected our family with others. My biggest goal through blogging is to show God's love and share our testimony with others.
Another cold weekend has gone by in western NY. Now we settle in and wait for spring. I don't mind winter as much as others. I'm not a fan of the hot and humid days of summer, so snuggling up for a few cold months doesn't bother me at all.
Now if I can just figure out how to keep 4 kids entertained inside the house all day!!??!?
Saturday, January 9, 2010
Sweet, wonderful, kind and loving Matt was home with the cherubs all day. If I keep up all of this sweet talking I'm hoping I can do this again sometime:) He does this without complaint, and has nothing but great things to say when I get home. I'm blessed.
The delightful hugs and kisses I got when I came home where just as wonderful as the time away!
Now to enjoy the rest of the weekend...
I would love to hear from you in regards to the January 21st project. I'm trying to compile thoughts, feelings, and stories from those who have supported Brady through this journey. I've heard from a few, but would love to hear from many more:)
Friday, January 8, 2010
Grandpa was here for a visit and was in the nursery as we got everyone settled down for bed. I had put some lotion on Brady's cheeks because his skin is so dry. He put up a huge fuss about it, so Grandpa was pretending to put lotion on his face and then onto some of Brady and Eli's stuffed animals in their cribs. I guess this idea peaked Eli's imagination. That coupled with the fact that we had fingerpainted earlier in the day led to Eli deciding that he should grab a container of Vaseline off of the nearby changing table and bring it into his crib after we left the room at bedtime.
Somewhere between the hours of 8pm and 11:30pm, Eli did just that. He got the Vaseline, opened it, and proceeded to spread it all over, everywhere. It was all over his face, his hair, his Snuffleupagus, his Elmo, his stuffed dog, little Snuffy, mickey mouse, his sheets, his blankets, his pillow, and about 8 rungs of his crib. I had just dug that dumb container of Vaseline out of the medicine cabinet last week to protect their cheeks when we went sledding. I left it in there to put on their chapped lips. Little did I know...
We decided to let him just sleep and we would clean it up in the morning. And what a mess it was to clean up. Vaseline just doesn't wipe off and it completely stained his sheet. He thinks the whole thing is very funny. I keep calling him Vaseline Boy and he does this stinker face and laughs.
Another funny thing about Eli these days are his out-of-the-blue revelations about the world around him. A few weeks ago, and now every few days since, he just said in the most astonished voice, "Allie can't talk! She can't!" What a funny boy.
We are hunkering down in the cold and snow for a pretty quiet weekend.
If you didn't read about the January 21st project, you can click here to find out how you can participate. I'm really excited to hear from more of you and to share your stories on the blog. I'm sure others will enjoy reading others' thoughts for a change! Please keep your emails firstname.lastname@example.org and comments coming! Any insights or relections as to how Brady's story impacted you are most welcome! I'm also hoping to have some pictures of those who prayed for Brady or helped our famil in some way. The book will become a treasure for our family for sure:)
Thursday, January 7, 2010
I've got this idea...
Two weeks from today is the one-year anniversary of Brady's diagnosis and his first surgery. January 21st sticks out in my mind like a huge sore thumb this year and probably will for the rest of my life.
After all, it was a bad day.
As this day has been approaching on the calendar, I've been thinking of a meaningful way to mark the day as to hopefully displace some of our bad memories.
So, I starting thinking of ideas. I'm a girl who likes to come up with big ideas. About 90% of them don't ever amount to anything...but I keep dreaming them up anyway. Like the time I thought, "I think we should have this big, huge party this summer to celebrate the end of Brady's treatment. We'll call it the BRADY BASH!" And then the time I had this idea to sell lemonade... Okay so those were the good ideas, but trust me people I've had plenty of silly ones that were downright impossible!
Back to my point. How do we mark this tough day in our family's history?
I came up with the idea called the January 21st.
I've been thinking a lot lately about little man Brady and how someday I will have to tell him all about this time in his life. He’ll have questions about the scars on his body and I will be answering them the best I can. Of course I’ll have the blog to refer to, the pictures, and even the cards that were sent.
But I want him to know more.
I want Brady, Eli, Cara, and Allie to understand that through Brady’s illness, people’s lives were touched. I want them to understand that God took this terrible situation and used it for His purpose. At a time in their lives when they may not yet understand the ripple effect that God’s love can have, I want them to learn that the story of a little boy with cancer truly impacted those who prayed for him and supported his family.
This is where you come in!
My idea is to put together a scrapbook with pictures and thoughts from those who have followed Brady’s story. On January 21 I would love to share some of them on the blog as way to commemorate Brady’s cancer anniversary, but also as a way to keep the testimony of his story alive.
If you are willing, I would love to have anyone who has been impacted by Brady to email me and share how his story impacted you.
Maybe you are someone who has prayed for Brady. I would love to have pictures of those who have prayed for him, maybe even a picture of our prayer warriors holding up a sign with his name, or saying “We pray for Brady!”
There may be some of you out there who have donated to a specific charity, reached out to volunteer, or just changed the way you view life’s ups and downs. Whatever your thoughts, no matter how small they may seem, would be a wonderful contribution to this project.
We have around 250 readers a day and I’m hoping to hear from many of you! I pray that gathering all of these stories will bless our blog readers, provide further healing for our family, and be an amazing testimony of God’s never-ending love for all of us.
Thank you for your help with this project.
Please email me directly at email@example.com or leave a comment on the blog. If you do not want your story or picture shared publicly, please let me know.
Wednesday, January 6, 2010
So it looks like I"ll be fine if I continue the medicine regimen I've been trying. Hopefully that will take care of the problem. I hate to think that I may have to give up coffee...just typing those words makes me shudder a bit!
It was strange to be in a hospital bed, hooked up to monitors, discussing medications. How quickly, and unexpectedly I was zapped back into the many memories of Brady's time in the hospital. I watched my IV drip today and instantly thought back to the first night of Brady's chemotherapy and how I watched a bright red poison drip through his IV. I'll never forget that color...
So that was my day! The nurses told Matt that he should help me to the car and go home so I could rest. Yeah right! We headed right to Olive Garden to enjoy a mini date night! This girl hadn't eaten all day, and drugged up or not, I was out of the house and wanted to enjoy myself. But alas, I'm feeling really tired now, so I'll be headed to be early tonight:)
Tuesday, January 5, 2010
I had to drag sweet Brady out of his crib right in the middle of nap time to get on the road to Rochester. The roads were snowy, but we got there and back by going slowly. Being home most days, I'm not that used to driving in the snow. I'm even less used to wiping the snow off of my car. I was quite glad that my dear husband remembered to put a snowbrush in the van! Brady did great during his appointment. He was far less reserved than ever before and even giggled with our pediatrician a little bit. It is amazing to see him sort of "healing" as he learns to become more and more comfortable around people.
The pediatrician and I discussed Brady's back deformity that is starting and she agreed that perhaps we may want to switch orthopedic doctors to one who deals primarily with pediatric patients. There is another doctor who is affiliated with Strong that we could go see. Our plan is to keep our appointment next week with the doctor we saw a few months ago. I'm interested to see his opinions of things now that something does seem to be happening with Brady's spine. His original thought was that it most likely would happen during adolescence. We'll see what he has to say, and in the meantime make an appointment with the other doctor.
So, here we are. As you all know, Matt and I are willing to go anywhere, see anyone who has the most experience with this type of problem. We have scoured the internet and it is tough to find much of anything related to toddlers who have had 5 level laminectomies. This is an area for prayer right now! We are praying for God's wisdom and direction as we take on this next challenge.
Monday, January 4, 2010
I felt like a prison guard today, one "incident" after another, one timeout after another, one screaming child after another. Thank goodness we all made it to 5pm in one piece. I was elated when Matt walked through the door. After a dinner of mini pizza bagels, canned peaches, and leftover green beans (this type of meal is only served after a day like today), I knew it would only be a few hours till bed time. Matt plays basketball on Mondays, so I was flying solo during those lovely early evening hours with 4 children less than 3.
The craziness continued...but I finally had all 4 in bed. Allie was fast asleep. Teeth had been brushed, faces washed, diapers changed, bedtime books read. All we had to do was pray. Sounds easy enough right?
Only a day like today could end like this...
Me: Okay guys, let's pray (I fold my hands)
Cara: (in the loudest, most obnoxious voice possible) JESUS, GOD, JESUS, GOD, JESUS, GOD, JEEEE....
Me: Cara! You don't have to yell, God can hear you just fine with your nice quiet voice. Come on guys, let's pray. Dear Jesus...
Eli: Mommy! I have boogers on my finger!
Me: (as I clean off the boogers) Seriously guys, Let's pray. Dear Jesus, thank you for our day. Please help us to...
Brady: (the sound that came from his backside at this point lasted 10 seconds and can only be described this way...) ffffffrrrrrrrrrrrrrrrrrrtttt!
Eli, Cara, Brady: Heeeheee Heeee! HaaaaHaaa!!!!!
Brady: That was me!
Me: (bows my head) Thank you Jesus for your sense of humor! AMEN!!!
Sunday, January 3, 2010
Tomorrow life is back to normal. The Williams family resumes the daily schedule where things happen at the same time every day. As mundane as it can be sometimes, I'm actually looking forward to it a little bit. I think we all function a little bit better when we are in our comfortable routine!
January is a busy, busy month for us. We all have doctor's appointments of some sort, 7 of them I think, and of course it is scan month. Brady has his pre-anesthesia physical Tuesday this week. Scans are scheduled for the 26th with a follow up appointment on the 28th. It's time for Brady's prayer warriors to kick it in high gear! The 1 year scan is a big milestone in the cancer world and we are praying for a clear report!!!
I wanted to update you all on the family of Anna McKinney. Her parent's have established an organization in her name dedicated to helping local families affected by pediatric cancer. If you search Anna's Wish on Facebook you can learn more. Or you can go to the website by clicking here. Please continue to lift up this family (Jeff, Jessie, Molly) in your prayers.
Saturday, January 2, 2010
Let us never forget how blessed we are to have moments to love those around us.
Friday, January 1, 2010
The first month of the year is starting off just right. Temperatures in the 20s, even colder tomorrow, and the snow is coming down!
We are all having a great week spending time with my sister and her family! And when they are in town it means more time with my brother and his family. Tonight we went to my brother’s for dinner, old home movies, and a little Wii. It is wonderful seeing all the cousins running around, playing, and making a big mess!
Here are a few pictures from our week:
Cara, Brady, and Eli on the couch with cousin Evan
Allie and cousin Ryan
Brady watching cousin Ryan play Nintendo DS.
Tomorrow we are all going sledding. This should make for an interesting outing. Just picture Matt and I tomorrow with our 4, not-potty-trained, toddlers…trying to get them all in their snow pants, coats, hats, boots…Okay, so it might turn out to be more work than it is worth, but I’m sure to have some great pictures!
With just minutes left in the year 2009, won’t you join me in looking back at the events of the past year that changed our family forever. May these pictures speak to your heart tonight as you look back at how far God has brought us this year.
Our year started off in about the worst way you could imagine…a devastating diagnosis, a life threatening operation, intensive care…
Another surgery to place a central line in Brady’s chest…two cycles of chemotherapy, several hospital stays, our family was apart quite a bit.
As we learned that chemotherapy did not work, we began to search for a different approach. God graced us with Brady’s beautiful smile and deep blue eyes every single day…
People prayed for Brady, thousands of people all over the world. We were uplifted and sustained by these prayer warriors. Our family, friends, and community came together to support us. We are forever changed by the kindness shown to us this past year. Forever…
Brady’s body changed, but his spirit was never lost.
God protected the sacred trust and love between a parent and child. Even though we had to inflict pain upon Brady in order to care for him every day, Brady loved us just the same.
We made the decision to leave our family behind and travel to NYC to seek out the best Neuroblastoma surgeon we could find. And all the while, people prayed and God protected us.
In April Brady had his 2nd major, life-threatening surgery. The heavens poured rain on that day, and God poured out the biggest miracle yet! A planned 3 week recovery in the hospital, turned into 5 days…
Once home, Brady had a lot of healing and catching up to do…
Brady was declared done with treatment, but not completely cancer free. We learned that for the next 5 years we will live day to day watching and worrying. We are learning to watch and to pray…
During the spring and summer months, Brady began to achieve new motor skills every day. He made a miraculous neurologic recovery…Steps for Brady became a wonderful reality!
Summer brought so many delightful memories for our family. It was a blessing to watch Brady starting to catch up to his brother and sister…
Working with Linda, Brady’s physical therapist, we watched Brady achieve goals as fast as we could make them!
It wasn’t just Brady that was changing. We knew that our heats would never be the same. After seeing what we had seen, we knew could never forget the children in our world afflicted with cancer. With the help of our family, friends, and community, we committed to making a difference.
We even took some time to celebrate Brady’s recovery and to give back to the charity that was there for us that very first day.
With every clear scan report, we learned to take a deep breath, thank God for more precious time, and to look ahead with hope and faith. We packed a lot of fun into the moments we had been given.
Goodbye 2009..the Williams Family is ready to take on 2010. And as we do, I’m so thankful for the words to a favorite old hymn;
Many things about tomorrow, I don’t seem to understand.
But I know who holds tomorrow, and I know who holds my hand.
Happy New Year from the Williams Family!