Thursday, July 26, 2012

Team Natester

I hated fundraising in school. Putting people on the spot by asking them for monetary support in exchange for horribly expensive wrapping paper or boxes of chocolates or other insignificant items seemed absurd and annoying, and I simply reached the point where I just wouldn't even do it. But every once in a while, I was tempted and pulled in with some pretty cool prizes...a glow in the dark frisbie, a water bottle, and even 30 seconds in a money box where you could try to catch as many $1 bills that blew around. Those incentives would sometimes entice me enough to knock on neighbor's doors and corner church members with fundraising equipment in hand.
Fast forward 20 or so years, and those early introductions into fundraising are continuing at a different level. The "prize" for our efforts this time around are unlike anything I could have ever imagined. They are for the betterment of my son's life and the lives of many of his friends who grace the halls of Shands Children's Hospital at the University of Florida. Fundraising for CMN has a direct impact on Nathan's life in countless ways.

As a new ambassador for the Children's Miracle Network, Nathan has been asked to be a captain for their annual radiothon. With technology constantly changing the world, CMN has decided to change up how they do the radiothon this year, creating a 6 week online campaign to help drum up support via social media. On September 18th, we will do the actual radiothon for a few hours, but the heart of the donations will be through online giving.
What we currently need are people who are willing to join Team Natester and help us drum up support through social media (emails, facebook, blogs, etc) over the next few weeks...just a mention here and there about Children's Miracle Network and/or Nate while adding the link to our team page. We are hopeful that between quite a few of us, we can gather support from others in the form of donations to help make a difference. Every last little bit earned in this fundraiser will go directly to Shands Children's Hospital at the University of Florida.

So please consider joining Team Natester and helping us by periodically petitioning your friends and family to help donate to the Children's Miracle Network.

Important Links:
Team Natester
To join Team Natester, just click on the blue words "Join our Team".
You will then have your own page that you can send the link to your friends and family in trying to gain monetary support. The actual start date of the fundraiser is August 1st and ends September 18th, but all of the teams are technically starting now that we have had our first official meeting.

This shows all of the groups and teams. We are in the Red Group. Each group consists of a CMN ambassador (Nate's role), an on-air radio host, a pediatric department (we are fortunate to have the Peds ER Dept), 2 pediatric doctors (we have 2 ER docs that we love dearly), and a corporate partner (American Integrity Insurance Group is our support company).

 And thank you dearly.

Saturday, July 21, 2012


For the past 23 years, my father has granted me an eccentric "Happy Anniversary" on every single February 2nd...groundhog's day. He has created a bit of confusion offering these salutations on my facebook wall the past couple of years, causing many to wonder if it was my wedding anniversary or the like. The reason for this greeting he has offered on that day for over 2 decades: February 2, 1988 was the day of my tonsillectomy. To continue this unconventional tradition (because the apple doesn't fall too far from the quirky tree), July 20th will forever be known as Emma's tonsilversary.
Emma has been looking forward to this day for months...complete with a countdown until her big day. I'm sure any psychologist would have fun with that interpretation. She did enjoy the undivided attention yesterday. The anesthesiologist was amazing...quite an old guy who had "pretty much already retired", according to his own words, but still worked here and there. He was a gem. She said that she laid against the sweet anesthesiologist while he stroked her arm until she was asleep.

The surgery went perfectly. Her ENT said that her adenoids were huge and nasty. She sure did need this surgery, and we hope that this will help her feel much better. She woke up perfectly, ate a popsicle as soon as she was reunited with us and sat wide awake and happy until we were ready to head home. With my only experience with kids and anesthesia being Nate, I was nothing but shocked at how well everything went. I was literally amazed at how well and quickly she woke and immediately wanted to eat. It was such a far cry difference than any experience we have had with Nate, whose body does not seem to like anesthesia at all.
Em has continued to amaze us once being home. She is doing fabulous. Obviously, her throat hurts, but she is doing so great despite it all. The biggest problem has been that she has so much drainage now that is making her cough and sneeze, and neither of those are comfortable at all on a really raw throat. But she continues to show us that she is made from some pretty sturdy stuff with how much of a trooper she has been through all of this. This kid continues to surprise us. 

Thursday, July 19, 2012

Crossing paths

I have shared many times in the course of this journey how amazed I am at how God has placed countless others in our lives the past 4 years that have played an integral roll in our family and found a special place in our hearts. I wish things were different for Nate...I really do. But seeing all of the positive aspects encircling his and our lives as a direct result of the trials he has faced has given us a true thankfulness for the aspects of these trials. This is the grace that God has given us all to continue through all of this joyfully. If we would have never gone through the aspects of this difficult journey, we would have missed out on some incredible blessings.
One of these blessings took the form of a beautiful, witty woman and her 3 precious blonde-headed boys. Beth and I first made contact a little over 2 years ago due to that fact that we had quite a bit in common. She was a photographer whose work I had admired and studied, and she had a son who was just a few months older than Nate who was battling his own medical struggles: leukemia. I found it even more incredible that after writing back and forth a bit, we found out that we lived in the same city and our boys were frequent fixtures at the same children's hospital, sometimes at the same time but in different departments. Talks of "meeting" were put on the backburner while we both fought the front lines of the medical world head on for our sons.
On one of the first days of school last year, I recognized an adorable little toe-headed boy walking with his class at the end of the day. From the pictures I had come to admire, I immediately remembered that he was her oldest son. And just a few weeks later, Beth and I "met" for the first time at pick-up. Her family had moved over the summer and her oldest was now attending school with my girls.
Throughout the school year, we would talk for the few minutes we waited at pick-up...sharing the news and sympathy of what our boys were experiencing, along with different everyday stuff. Nate and Ezra, who shared so much in common and didn't really know it, chased each other around the same tree day in and day out. With Nathan not having much experience with kids his own age, Ezra was quite instrumental in silently teaching him how to interact. Nate has a tendency to scare any kid his age with his unusual appearance coupled with his social awkwardness in learning how to be friends, but Ezra soon became accustomed to his oddities and the two created a bond over Mario Brothers, Angry Birds and whatever else they found entertaining while chasing each other around that big oak tree.
Through our encounters with each other, Beth and I experienced and underlying unspoken bond. A bond created from fear and stress and sleepless nights...from concern for the future, lonely walks through hospital walls, and difficult talks with medical personnel...from heartache and exhaustion and intense hope. The two of us have always carried that unspoken, unbroken bond shared by mothers of ill children...its a friendship that can not be replicated in the "real world" and one that most don't understand. But those of us that carry it understand that feeling to its core.
After an incredibly courageous 3+ year battle with leukemia, Ezra's last dose of chemo through his port was today. He will continue to take chemo by mouth for a while longer, but this ending of intravenous chemo means that he will be able to have his port removed next week by a surgeon both our boys share. And shortly thereafter, this precious family will move to Minnesota, where they will embark on a new chapter in their journey closer to their immediate family. We will miss them all greatly.
At the beginning of the summer, Beth (who I believe is one of the most talented photographers in this area) so graciously took pictures of our family through the organization Inspiration through Art, an organization that gives pictures to families with children who are battling life threatening diseases. Since I always take pictures of our kids, we do not have any family pictures. Beth changed that, and the gift of family portraits that she has left with us is one I could never repay. They are simply priceless. Memories of our family love captured in a split second by such a talented photographer...moments that we will all cherish forever. Irreplaceable memories caught on film...absolutely priceless.
Its continually amazes me to think of the relationships we have been blessed to create through this journey. We will miss the Mancuso family.

Sunday, July 15, 2012

After a long hiatus...

After a month of craziness and a huge hiatus from writing here, everything seems to have settled down at least a little bit. We were gone for the last bit of June and first of July, totaling about 3 weeks. While the trips were wonderful and much needed, it is so good to be home and settling back into the lull of summertime around here. I hope to add photos from our trips to Marco Island and Kentucky throughout the next few weeks.
The kids had a blast on our long adventure. I can't get over how much easier it is to travel with them the older they get, and how they can adapt to later bedtimes and crazy schedules with much more ease. I also can't believe that school starts in a month where Abby and Emma will be in 3rd and 1st grade. We hope to make the most out of the rest of the free time we have this summer...
...starting with Emma getting her tonsils and adenoids removed this coming Friday. She is a bit excited about the popsicles, ice cream, pudding, and added attention she is going to get (she has a count down every day until surgery day) and just a wee bit nervous about the actual procedure. Her best friend's dad is her ENT, so she is a lot more at ease with "Mr. Garrett" taking good care of her. And even though we are well versed and strangely more comfortable with medical procedures, it is quite comforting knowing that she will be under the care of one of our friends. And I am really looking forward to seeing how this surgery will impact her positively afterward...she really needs these huge suckas out!
After having a rather rough month of May, Nafey boy has been doing outstanding the past few weeks. It has truly been incredible to see the transformation in him once again with better eating, better energy, and pure happiness. His surgeon increased a couple of the settings on his stimulator the end of May because he was once again vomiting, nauseous and bloating pretty badly and was getting most of his calories through his gtube once again because of his lack of eating. The changes in his stim settings really helped him through the rough patches of his body trying to bounce back from being pretty sick, and I think it has definitely played a huge role in how well he has done through the craziness of this summer. He's consistently eating better now than he has in a really long time, and that along with still supplementing with formula at night has helped him gain some much needed weight and height.
Nate had an immunology appt in June that brought about some more changes for the little guy. He was diagnosed with hypogammaglobulinemia (low IgG) when he was just a few months old, and IVIG therapy has been mentioned at nearly every appt with our immunologist here and in Houston as a probable treatment at some point. We have been hesitant about it until just recently for several reasons. But looking at the trend of his IgG, along with his t- and b-cell subsets on his lymphocyte panel, he may have a common variable immune deficiency (CVID) now instead of just hypogam. Additionally, he had blood work sent to a lab in Cincinnati that tests for certain types of lymphoproliferative disorders, and this can help us determine if he has a true increase in double negative t-cells like his labs may be pointing toward.
So, Nathan's immune system is struggling, and his immunologist here has said that she believes that he will benefit from IVIG. In fact, she said that due to the detrimental effect illness can have immediately and in the long run for patients with mito, she would rather most of her mito kids partake in this therapy. From what we have been told, it takes a lot of energy to create properly functioning immune cells, so immune deficiency is often seen in mito disorders. We have finally "come around" to the idea of IVIG for a few reasons...his immune system is not improving at all, his organ function seems to decrease at some level each time he gets sick, we want to preserve the function of his ICC cells in his stomach so that his stimulator can continue to work well, we want to keep open the idea of him attending school, and IVIG is now offered as subcutaneous infusions that can be given at home.

Nate's first infusion will be within the next few days. He will be getting 2g of Hizentra each week and will see his immunologist every 4 months to keep track of his immune levels. A nurse will come to the house for the infusions for the first couple of weeks, and then I'll take over the care from there. He should have 2 subcutaneous needles inserted, and the infusion will more than likely last just an hour and a half. Our hope is that this treatment is the catalyst to keep him well, improves his wacky immune labs (and get his IgG to stay above 500!), and helps him continue to improve overall.
And finally on the changes with the little guy, we were approached a few months ago by our local Children's Miracle Network asking if we would consider Nathan being a local ambassador for CMN and Shands Childrens. Of course we were honored. The ball quickly got rolling with interviews and fundraising opportunities. We are participating in an online/radio fundraiser for about 6 weeks coming up. Team Natester will need participants on our team to help drum up support via online social media, etc for this fundraiser that gives directly to Shands Childrens. I will include more information once we have the initial captain's meeting next week. This is definitely going to be a fun adventure for our family, and we are so happy to be a part of such an amazing organization!
Okay, more pics will follow in the coming days. Just wanted to jot down some of the changes over the past few weeks for us all. I look forward to writing more on here again.

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