Posted on January 6, 2014
If love were the currency for a cure
Welcome to 2014 and the latest update on Jack’s fight. Lots to share. And the usual rules apply: the good and the not so good included. We have been extremely blessed by the generosity of friends, family and strangers alike particularly since Jack’s glioma diagnosis and certainly during the holidays. We have received care packages from the McLaughlin’s, Gordon’s, Fagan’s, Palbicke’s, Davis’ and others. All have been received and have served as a particularly great distraction on chemo days and those tough days after. There are a lot of “things” in those packages but most importantly there is tremendous love. If love were the currency for a cure than we would have one!
I wanted to share with you a few stories about children that are helping us fight our battle. My college friend, Laura Daniluk McGaffigan, is a mom of 2 young boys who are great hockey players from Boston. Together with other families and teammates, they spent the MONTH of November raising money and awareness about NF by shooting over 1000 hockey pucks. These boys have never met Jack. They don’t know him or anyone with NF, but they and their families spent countless hours to help. They raised over $3,200 collected from many families that are now part of the fight! The McGaffigan boys also sent Jack and Luke their Boston Stars hockey jerseys! They even sent Grace some items too! The attached photo to this article says it all! If love were the currency…
HUGE supporter of Jack, Joanne Rizzotto-McKay sent us a hardcover bound book over Christmas. It was a 50-page story custom written and illustrated by her 3rd grade class in Medford, MA. The story was about Jack, Luke and Grace and Santa Claus. They included specifics about our kids, their favorite things and it was truly amazing. These 9-10 year olds did all the drawings and it was quite an effort that brought us all many smiles. If love were the currency…
Our friend Allison Maffei and her kids and their friends none of whom have met Jack, spent the day selling cookies and lemonade to help raise money and awareness. Again, these kids sent cards and hopes for a cure for Jack and wanted to meet him one day. If love was the currency…
Luke’s friend Hudson Onians just had his 7th birthday party this past Saturday. In lieu of receiving gifts from his friends and their families, he asked that people make donations to CureNFwithJack! That’s right, he is SEVEN. And yes, he is Luke’s friend, not Jack’s. He wanted to contribute. If love were the currency…
Yesterday, we received a donation from Emma Flynn. She is our neighbor who has helped with previous events to raise money and awareness. She put on her Christmas list to Santa that she would like a donation to CNFWJ so that we can get a cure. If love were the currency…
This past week our friend Jennifer Barr’s daughter Olivia wanted to help raise money and awareness as part of her Confirmation project. She is making and selling meringue cookies. They are custom made blue and green to reflect the NF and CNFWJ colors. In 2 days she had SIXTY orders of cookies and a whole bunch of folks who now know about NF! She is making a difference. She is 9. If love were the currency…
This last story is not about a kid, but a good friend of mine. Dan Ryan has been a friend and colleague for years. We are not best friends. In fact, we rarely get to see one another. We disagree on many things and love to rib each other on a myriad of topics. Dan has not met Jack. But, Dan knows Jack. Dan is a Dad. Dan hates NF. When we first got the news on the glioma, Dan sent a Chili’s gift card. Around Thanksgiving he sent a get well card signed by Chicago Blackhawks player, Patrick Kane. Last week he managed to get and send a SIGNED Patrick Kane hockey jersey! We timed it so we could give it to Jack during his latest chemo/oncology/mri/gameplan meeting. The attached photo says it all. If love were the currency…
Which brings me to the situation we now face. The MRI showed no shrinkage in the tumor. While you can imagine our disappointment, we were not totally surprised based on expectations that were laid out for us, but we had hoped for some change. Bad news. There was no growth either. There were no other detectable tumors. Good news. In consultation with his doctor, we are trying a new medicine and regimen. Good news: apparently it will minimize some of his side effects and hopefully shrink/eliminate the tumor. Bad news: His regimen WAS going to be 52 weeks with 4 weeks on 2 weeks off with the other medicines. It is now 52 weeks, no breaks.
So, if love were the currency for a cure for NF then we would have one. But, alas, it is not. Scientific research (funded by private companies, philanthropists and individuals like you) that supports passionate, brilliant, dedicated and scientists, physicians will bring the cure. It’s what we all want. It’s what we need. Don’t EVER kid yourself that we can survive without the love, because we can’t. It is and has been a major part of what keeps us going. Remember that. Remember what you have done, what you are going to do and that when the cure comes you can say that you were part of a world changing event. Think about that.
Many of you know what I mean when I say F NF! It has caught on a little bit and the “F” may be offensive to some. Well, for those who don’t like THAT “F” word, substitute it for FUND. Now, let’s go F NF! together in 2014.
With deepest thanks, we remain grateful and hopeful,
Jake, Beth, Jack, Luke and Grace
Posted on December 27, 2013
KISS-MY-ASS CHEMO AND OUR ARMY
Several weeks ago, Jack went to his typical chemo infusion. It started off as usual – first to the front desk to get his wrist band after numbing cream is applied to his port, blood work and weigh-in with the nurse, the 100-point check list with another nurse, and the wait to see the oncologist, before the wait (and wait) in the infusion room. When Jack’s oncologist came in, he of course asked Jack how he was feeling and what he did that week. He replied that he was doing well, and that he is planning a “kiss-my-sweet-ass chemo party” the next day. (Yes, ordinarily we would not allow him to say “ass,” but with what Jack is going through, Jake and I thought that was the least we could grant him (he is absolutely allowed to say that chemo sucks too!)). Upon the announcement of his . . . unique . . . party, his doctor laughed until he cried, and later told me he could not remember laughing that hard, thinks Jack is a riot, and that one of the reasons he went into this field in the first place was because kids are just so great and that you can do this for 20 years like him and still hear something new! Apparently, Jack, with his sharp taste in clothes and ability to make people laugh, has already earned quite the reputation at Aflac Cancer Center.
I won’t deny that Jack has an unbelievable attitude, and sets the pace for us to follow. I marvel at him. But his spirit and perseverance does not exist in a vacuum. As my good friend told me months ago, we do not have support – we have an ARMY of people around us, providing love and support every day. Jack feels this every day – his family feels it – and it enables him to think of the good things, as he says, like the kiss-my-ass chemo parties (ok, yes that was an O’Brien-side idea – clearly) and the special visitors during infusions and the seemingly endless care packages that he gets to open each time he has chemo. He has his strongest supporter and protector by his side – his brother Luke – and his sister Gracie to make him laugh. He has been made honorary captain of the Cambridge wrestling team, with another wrestler dedicating his season to him, and been given a Christmas pickle to put on his tree, and been sent a blender in hopes of making smoothies to fatten him up. Patrick Kane sent him a get-well card! Packages arrive as far as Belgium with sweet treats and things to occupy him (and often for his siblings too – which is so touching), and we have secret supporters (the Milton Love Club) – who put a good luck sign in our yard, along with other anonymous treats left at our door, help caring for Jack’s siblings, and numerous, numerous meals from friends and neighbors who know the last thing I have the energy to do is to cook when we get back from chemo. We have family here and in Boston that are all over this and fighting with us and who have our backs, from more care packages, to caring for our whole family, to making sure that Jack laughs and laughs, and letting us cry when we need to. We have 3 men in our lives (and those close to them) that have changed the course of CureNFwithJack. The Burke boys’ after-school family is another one of Jack and his family’s lifelines, and loves ours like their own. And the teachers, oh the teachers – from his 2nd grade teacher who loves him so and is doing everything in her power to make 2nd grade a rewarding and growing time for him, to others who have cooked for our family and provided every type of support. Oh the Christmas the Burke children are going to have thanks to so many! We have cases of Muscle Milk from friends who know Jack needs all the calories he can get, and received an unbelievable book – The Special Christmas Wish – written by our special friend’s 3rd grade class. People from all over – several whom we don’t know personally – want to know about NF and run to fight NF and shoot many pucks to fight NF and who sell lots of lemonade to fight NF, and send letters to Jack to keep fighting (from student council and neighbors and far beyond). One of those letters came just last week, from a young boy who learned about NF through CureNFwithJack and who wants to cure it when he grows up. And I’m just scratching the surface.
Then there is support for Jack’s Mom. There have been meals just for me (that “yucky” healthy stuff only Mom loves to eat) and wine and messages of love and support sent in every medium – too many sometimes to even respond – but all read and deeply heart felt. My peeps have texted me and called me and told me that to care for Jack – I need to accept help, and that I can do this, and that they are here for me so that I am here for Jack. Thank you for giving me permission (indeed, insisting that I better!) to rely on so many – from our Alpharetta and Milton friends to our irreplaceable friends next door (Go Blue!) and down the street to those who have contacted me from Illinois and Boston and Florida and Philly and honestly from too many places to remember. My Michigan women also have wisdom wise beyond their years (again, Go Blue!) and somehow know just the right thing to say when there exists no right thing to say. I am a very wealthy woman when it comes to supportive friends.
I would be remiss without mentioning the one person without whom I could not fight NF – Jack’s Dad. He has faced NF head-on with bravery and determination, and there are not enough words to describe what he has done for our son’s cause, particularly in terms of communication these last several months, particularly when I could not talk. Thank you, Jake, for keeping everyone in the loop when you don’t want to even think about NF or chemotherapy, and for the blog, and for everything that you do to keep the CureNFwithJack machine moving. With him by my side, I know that WE will never, never, ever give up this fight.
So when people say “I don’t know how you are doing it” well, we are doing it because we have Jack’s ARMY behind us. That’s how we are doing it — and that is how we will do it. This is what goes through my head when we are in the infusion room and every challenging moment in between. This is why I cannot ever adequately express our gratitude, and indeed I break down with tears when I think of our ARMY.
If I could be so bold as to ask something of each of you this Christmas season, I ask to not only keep bringing awareness of NF wherever you go and however you can, but to also think of and pray for those sick children – far too many – who don’t have Jack’s army behind them.
Merry Christmas to all, and just for the record, I’m with Jack: Kiss-My-Ass Chemo!
With much appreciation,
Jack’s Mom
Posted on December 4, 2013
Week 9: The haircut can wait.
Tomorrow is the 9th week of Jack’s chemotherapy. God how I hate this. I always like to have my boy’s hair neat and on the short side. I don’t know why, but perhaps I inherited that from my Dad. I was brushing Jack’s hair this morning before school and I said to him…we have to get this hair cut. He didn’t say much, he was pretty tired and suffering an upset stomach. As I said that, I stopped and realized briefly how thankful I was for that hair to brush. It has always been one of the great things about him..He has beautiful, brown curly “chicks dig me” hair. My bathroom sink counter is white and as I finished I looked down and saw what I wish I hadn’t. Quite a bit of those brown locks sprayed all over the sink. It stopped me briefly and as I looked at this reality it shook me. He hadn’t noticed. Now the thing about Jack is that he is strong at heart and powerful. Unlike Samson from the bible he doesn’t NEED his hair to be powerful. I just wish he could keep it. So much has already been taken from him. So another reality hit me today and we will move forward.
On another note today also marks the birthday of one of our great friends and Jack supporters Matt Benson. I wrote about him today on Facebook and for those of you who don’t know him or what he has done for Jack and don’t read FB, here is the text of my birthday note to him:
Posted on November 15, 2013
Lesson Taught…Lessons Learned
As I write this update, Jacko is getting ready for WEEK SIX of his chemo treatments. I told myself I would do these about once a week but alas it just gets harder to find time and find words. With that in mind… Here goes.
About 3 weeks ago as Jack was getting ready for week 3, he presented to his fellow second graders. The topic was about Neurofibromatosis, how the disorder impacts him and chemotherapy. With some help from his teacher Amanda Bausman (saint) and his Mom they came up with a 10 minute presentation, an accompanying quiz and prizes for the person who got the highest score on the quiz. Of course, this was about Jack communicating to his classmates in an age-appropriate, educational way about what he is going to endure. He laid to rest and addressed head-on how he may get sick, he may lose his hair, etc. He assured them that he is not contagious. He asked them for continued friendship and support. His classmates were eager to say they would be happy to comply. Jack’s uncle, David Stordy made a trip to see him for the weekend and he was in attendance too. Jack love Dave and I loved watching them interact. Luke and Grace got plenty of Uncle Dave time too. After the quiz and prizes and applause, it was off to chemo..again.
Halloween came and went and Jack enjoyed his favorite holiday by hosting a haunted house for his and Luke’s friends. His Grandmother Mary Anne helps coordinate this event and it truly was spectacular. Brenda and Kevin Miller joined in the. Brenda watches and instructs Jack and Luke in an afternoon program and quickly has become a great part of our family. AVERY special Halloween treat was having Grammy Burke and Aunt Peggy come down for a trick or treat visit! A treat for Grammy Burke was the opening of a brand NEW Dunkin Donuts a mile from our house LOL… Great to have them here with us to support Jack and spend time. Then it was off to week three.
While all this is going on, friends, family and neighbors who are continually sending us reminders of their concern are supporting us. Additionally, every Friday someone is dropping off a meal! Coordinated by Jennifer Jones-Reeves, apparently neighbors and friends have signed up for months to do this for us. After a long day at the hospital each Friday, this is a welcome treat that is full of concern and care…and delicious!
Last week, thanks to family, Beth and I went to the CTF Gala in NYC and actually had 2 nights outside the house!! It was wonderful to connect with other families impacted by NF. It was great to meet doctors and fund raisers, etc. Bailey Gribben, who is also battling NF, was a very deserving CTF Ambassador and we were glad to see him recognized. His family has incredible strength. Most importantly for Beth and I was that we got to spend time and party with Matt Benson, Carol O’Connell, Pat Kelly and Dan Allen. Together with our team in Atlanta, these guys helped coordinate events this year that resulted in almost $180,000 in fundraising for CTF through CureNFwithJack. On this night we discussed that a bit but for the most part we just had fun. Never will be able to repay those guys.
Stewie RahRah! Stewart Rahr is a philanthropic billionaire who we got to know through Matt Benson and Heather Hickox. His office is in Trump Tower in NYC and we went by to share our story and thank him for his $25,000 contribution to CureNFwithJack DC golf tournament. Beth and I were amazed at the time he took, the genuine concern he had for Jack and the insightful questions he asked. This is a man who can spend his time and money ANYWAY he wants. He decided to give some of both to Jack. He will be joining us in 2014 in Palm Beach at the 2nd annual tournament.
Our friends the Dubuc’s held a weekend-long fundraiser yard sale for us and it was a spectacular success! Uncle Mike O’Brien showed up along with Aunt KC to help see Jack through a few of his past treatments.
Jack is doing OK but starting to be impacted. The issues he faces as someone with NF get exacerbated by chemo (weakness, lethargy, attention) and we are fearful of what lies ahead. I say that because I will never lie to you. This sucks. It’s scary. And I hate it. However, we will fight for him and with you all the way. Thanks as always for reading, for caring, for asking, for checking in, for finding out more on your own and to those who choose to in February…thanks for running in the Cupid Undie run in your underwear!
Jake, Beth, Jack, Luke and Gracie
Posted on October 22, 2013
How do you eat the elephant? One bite at a time….
It has been a few weeks since my last update. Apparently people are reading the updates because I have been asked when the next one was coming. Hard to find the words sometimes, so sorry for the delay. As I write this, Jack has completed two of the FIFTY TWO chemo sessions. The Carboplatin and Vincristine regimen he is on has caused him some jaw pain that makes him not want to eat. It was determined that it was likely the Vincristine and that for the second treatment they did not give him any. He has not complained of that pain so far, so we may be changing the plan going forward and reduce or eliminate the “V”. No way around this folks..it sucks. But we persevere. Ryan Eversley stopped by for Jack’s first infusion and stayed with him the entire time which Jack loved. He played on his phone with Jack and made a bunch of Vine videos and provided support and needed distraction. He is a great friend to us all. Jack’s Grandmother, Mary Anne O’Brien has been immeasurable in her love and support. She has attended both infusions and offers great perspective and guidance as a professional nurse, cancer survivor and loving grandmother. Essentially, she is “the bomb”.
OTHER UPDATES:
We had a haunted house this past weekend that was a great success. Many of Jack and Luke’s friends and their families stopped by for some fun. The boys really had fun scaring people with their cousins. It was a nice distraction for all of us and really a great time. Ken Rada is a local professional photographer who photographed our wedding. He called and asked if he could come by and “shoot” the Haunted House. Many of you know Ken has volunteered and has photographed both golf tournaments and has donated prizes for our auctions. He has been a great friend and supporter who is absolutely brilliant. Check out the photos here: https://www.dropbox.com/sh/ebwa0v73tqfgthh/ssoHNCaVCB#/
Our great friend and neighbor, Jeannine Jannot started a facebook page for people locally who want to lend some type of support. We are very fortunate to have so many local friends and neighbors who want to “do something”. The challenge is figuring out what we really “need” and organizing all of that in a way that works for all. The page is https://www.facebook.com/groups/339950336150898/ This has been great and thanks.
Maha Mamdouh Mostafa El-Sayed is a Mom, friend, neighbor and dentist. She has asked to help by providing her expertise and love for Jack by maintaining and monitoring his oral and mouth health while he endures chemo. Time, Talent and Treasure indeed.
Beth and I are planning to attend the annual Children’s Tumor Foundation Gala in NYC next month. We are pleased that our friends Dan Allen, Patrick Kelly, Matt Benson and Carol O’Connelll will be joining us. They all worked very hard this year hosting TWO golf tournaments for Jack and others with NF. It will be nice to just relax and enjoy their company and thank them for all they did in 2013 for CureNFwithJack.
Brad Leathers who is also an NF DAD has been donating and creating our custom CureNFwithJack golf hats that are a tremendous marketing and awareness. I have had many requests from people who want to purchase a hat or t-shirt and he has agreed to help us create and manage our “store” so stay tuned for that.
Last weekend, in addition to our haunted house friends in New Hampshire and Massachusetts were supporting Jack. Our great friends, teh Dubuc’s had a multi-day, multi-family yard sale to raise money. Sandy and John Dubuc along with their kids and family worked hard over two days so that more people would learn about NF! At the exact same time, Diane Amirault, Joanne McKay, Nancy Murphy and Sarah Ahern walked for NF in Wakefield, MA and met up with Hank Morse who was emceeing. These wonderful people have been friends since high school and college and have been there for us for a long time. Awesome.
CUPID”S UNDIE RUN
Perhaps the largest growing fundraiser in the COUNTRY much less for CTF. Beth and I participated last year. In one day, simply from people running 1 mile in their underwear in 17 cities they raised $1.3M for NF research! In 2014 they have expanded to include Boston and Chicago and several other cities. In lieu of an official CNFWJ event in my hometown and Beth’s hometown we decided to ask people to create teams in these cities and others to raise $ and awareness. My goal is to have the largest group of underwear clad runners in the country. In Boston, we already have 40 people signed up to run! In DC, Austin, Chicago and Atlanta there are CNFWJ teams already in place. Here is the link to the Boston team page
http://hopecur.com/cur/teampage.asp?fundid=9064 You will find lots of info about the event here, but to summarize 1 mile of running, 4 hours of drinking! My kind of race 🙂
FUNDRAISING 2013
Lastly, I wanted to talk about this. When we started to try to make a difference by raising awareness and $ we hoped to raise $20 K per year and that MAYBE by the time Jack graduated high school we could raise $1M in his name. I attached a screen shot from CTF page today. I want you all to look at that number. I want you to know that YOU are part of that number. I want you to know that we are so pleased and happy that Jack’s story has benefited and will continue to benefit so many other families impacted by NF. Whether you wrote a check, played golf, wrote a note, sent an email, “liked” a picture or comment, made a call, sent a prayer, ran a race YOU make a difference. To date after just about 3 years, CureNFwithJack has raised a tremendous amount of awareness and almost $250,000! As the attached photo shows, in 2013 so far alone we have raised over $172,000! Amazing. Powerful. Impactful. Jack really loves knowing that he is making a difference. It empowers him.
As his struggle intensifies, as he gets sick before he gets better, he will need you. As his appetite and all of our appetites for that matter get disrupted he will need your help to eat that elephant, one bite at a time. THANK YOU ALL.
Jake, Beth, Jack, Luke and Gracie
Posted on October 7, 2013
T’was the night before chemo….
I don’t have anything cute or deep or inspiring to say tonight. I am just a Dad waiting for his son to have chemo tomorrow. I am not unique unfortunately but it doesn’t make it easier. I spent a bit of the day with him, Starbucks in the morning and a special post-school movie. I just wanted it to be a good day for him. I won’t go on too long tonight, not much more to say. I know this… my boy is courageous, inspiring and powerful. He, of course, does not know all of the challenges he faces but who does? Sadly and undeniably it is a new life for him starting tomorrow. As I watch him tonight, I know this. As his father, I know this. As adults life experiences give us these days and that is OK. Death of a parent, a marriage, a divorce, the birth if a child, a new career. Life changing, irreversible days. As an 8 year-old, Jack should not have these yet.
He will face tomorrow and every day after tomorrow the best that he can. With dignity, humor and grace. With concern not for himself but for others. He will want to continue to do well in school and will not want to miss a thing. He has handled this disorder and what it has reaped upon him with great tenacity, bravery and curiosity. No doubt he will again face challenges that will effect how he feels and looks. While most adults would find that difficult to face he will do so seamlessly. I will help him but I can’t take the pain of the chemo away. I can’t take the stares away. I can’t take the NF away. I can and will with Beth be the best parent I can be for him on the good days and bad days.
Over the years I have had created videos that document his journey. One of my favorites is one of the first. This was in support of Tami Liptak who was running a marathon for Jack back in 2009. The song that accompanies the video is “Closer” by Better Than Ezra and the lyrics describe the joy of a father and his newborn boy. Back in 2005, before Jack was born this song became our anthem to him assuming he was going to be a boy. This song remains special to Beth and I and if I ever meet Kevin Griffin, who wrote the song, I would like to shake his hand and say thanks. The video serves a purpose tonight, even this many years later. If you decide to watch it, I think you will know what I mean. This is the link from youtube.
Lastly, thank you again for your support. It means the world to us and to Jack. Onward, forward and F NF!
Best,
Jake and Beth
Posted on October 1, 2013
Tonsils, Triumph and Tribulation
It has been several weeks since our last update. Lots to report and as I warned before, if you want to read on…it is a combo of good and bad.
Let’s start with Jack’s biggest supporter. Luke. He has been suffering for quite awhile with tonsils and adenoids thatjust constantly make him sick and uncomfortable. Tomorrow he has surgery to remove them and get on a path of comfort and restful sleep. He is going to need some TLC and we are all ready to give him that attention. He’s a tough kid, a brave fighter but also just 6.
As you may know, CureNFwithJack hosts golf tournaments to raise money and awareness. The last one of 2013 was last Friday in Clifton, VA hosted and organized once again by Matt Benson. Matt has been a huge force for Jack and once again came up big for him and all those impacted by NF. Through his work, networking, passion and focus he had the most successful event to date.
Along with Beth, the unprecedented medical symposium happened concurrently. Folks, we had almost 20 physicians from across the country together for the first time in one room to discuss how better to care for NF patients and find a quicker path to treatment and a cure! The doctors were actually thanking US! First of it’s kind…but not last for sure. Stay tuned for results reported back from this historic meeting.
In its second year, CNFWJDC has 94 golfers! A 25% increase over 2012. All involved had a great time and I have the pictures to prove it. http://tinyurl.com/las49d3
Other NF families were in attendance, which always make it that much better. Through the generosity of attendees, partner supporters and sponsors including Long and Foster and the Stewart Rahr Foundation we were able to raise close to $70,000! CNFWJ annual total for 2013 is going to approach $180,000! An astonishing number for us and a triumph for all of you who have supported Jack with your time, talent and treasure!
We came home on Saturday to a clean house thanks to the O’Brien family and a team of professionals helping us maintain a clean, safe environment for Jack. Also, our friends Brenda and Kevin Miller decorated our house for Halloween knowing how much Jack loves this holiday. After 11 hours in the car, we approached our house lit up in orange and ghouls, ghosts and goblins ewere verywhere. Needless to say both boys were thrilled! Thanks to family and Jeannine Pattillo and family Gracie was well cared for too.
The road that we did not want to walk starts next week. Jack will begin a rigorous course of chemotherapy on October 8th and will continue to do so for 15 damn months. He will make it through this challenge with the knowledge that he has HUNDREDS, maybe THOUSANDS of people cheering him on and “holding his hand”. It helps. Trust me. I will be updating again soon and as always if you have questions for me or a message for Jack…fire away.
Thanks very much and F NF!
Posted on September 12, 2013
HE did NOT sign up for this…but Beth and I kinda did
If you have been following the latest news over the past 7 days about Jack you know that it has not been good. In a matter of seven days we learned quickly about chiari malformations, cerebral tonsils, CSF, brain stem tumors and the list goes on. What started as an annual (routine) MRI set us on a course we hoped we would not have to travel. One that many parents inside and outside the NF community have traveled. On Monday, we were told to get Jack to DC to see his doctors on Wednesday. We went up and had a great night with Steve Rau, Matt Benson, Carol O’Connell, Pete Norton and Dan Allen. Jack loved being with his “adult friends” and it was very comforting for Beth and I to be surrounded by these concerned friends and Jack fighters. Yesterday we met with one of the best known physicians in the world who has been caring for Jack for years. Dr. Packer is a neurologist who specializes in NF. Frankly, if he was in Timbuktu we would have flown there.
He did not have great news. He discovered a glioma on Jack’s brain stem. He needs help immediately. NF kids can’t be radiated and surgery is not an option. He will begin 15 months of chemotherapy next week to battle this glioma and shrink it and kill it. He will be receiving treatment here in Atlanta and be monitored by the best in the world here in Atlanta and DC. It will, no doubt, be a long road. I would gladly take this burden if I could…but I can’t.
The title of this entry may puzzle you so let me explain. On the way home yesterday I kept saying to myself that this kid just didn’t sign up for this shit. Over and over again. So sad. But as his Dad I did. You see the day he was born I assumed and accepted the entirety of this amazing life before me. I would live for him and I would die for him if I had to. I would do anything for him. For all of my children. So in a weird way I signed up for this. If you are a parent or have a relationship with someone you truly love than you know what I mean. I think that is almost everyone reading this. So, even though he is just 8..it is his battle. He has to do the treatments. He has to react. He has to get tired. He has to get sick. He has to get better. We just have to do as much as we can along side of him and that is what we will do. It is what we signed up for 8 plus years ago.
We have been overwhelmed by the outreach and concern for Jack and our family. We are fortunate to have great friends and family close by and far away. People we have known for decades…and others for just days. All concerned for Jack and our family. Keep your support going. Change your profile picture to his logo, like a picture, share a thought, send a message, attend a golf tournament or event, donate $10. SHARE HIS STORY ON YOUR PAGE. Tell people to like his page (over 500 people did that). 1700 people saw my last update! 1700! I don’t know 1700 people. Now I do.
So it is. There is no room for negativity. No room for wallowing. No room for despair. Hope, medicine, courage, tenacity, positive feelings, humor and love. Play your role. However you define it. It is important. Believe me. Your impact is immense. No doubt these updates will get harder and I am not looking forward to explaining this to Jack and Luke but we will do so soon.
Please keep Lukey in your thoughts too. He is a tough but sensitive and caring little brother who will understand a lot but also have scary moments and thoughts. We love him and Grace dearly and thankfully most of this will go over Grace’s head. Not so with Luke. So remember him too. Jack will want that too.
Stay with Jack folks. Be with him. You will get way more back than you will ever give. Trust me. I know.
Thanks again,
Jake, Beth, Jack, Luke and Grace
Posted on September 10, 2013
A harsh dose of reality and a path of continued hope
On my post last Friday, I told you I would update you and share events with you whether it be good or bad. Here goes:
You may recall that Jack was having some issues with pressure on his brain due to a chiari malformation which is causing his brain stem and cerebral tonsils (yes you have more than one set of tonsils apparently) to get squeezed together causing some headache pain. We were discussing the very distressful possibilty of a surgical procedure to help solve this issue. With NF you just never know what is coming.
Case in point:
We always send the scans done in Atlanta to his doctors in DC. They read them yesterday and they detected what they believe (hope) is a low grade glioma on his brain stem. For those of you who do not know, a glioma is a fancy term for tumor (at least that is how I define it). Needless to say NOT good news. In fact, terrible fucking news. Dr. Packer told us yesterday to bring Jack up ASAP to discuss action plans and coordinate care between both cities (ATL & DC) so we can meet all of Jack’s needs and start killing this glioma. Booked a flight for the three of us for today. We hate, hate, hate to leave Luke and Grace behind but we have to keep things close to normal for them.
So it is that we fly to DC today, meet with the team on Wednesday and fly home Wednesday night. We have had a number of people reach out and want to help and we will not be shy about taking you up on your offers. True to form, we are blessed to have Steve Rau in our lives and he has offered to put us up tonight, play lots of Wii with Jack and even make pancakes Wednesday morning! Of course, there will be beers in the house too, otherwise I wouldn’t stay! Beth is also coordinating with doctors here in Atlanta while we take care of business in DC and we will follow up with them upon our return home.
Please keep thinking good thoughts for our boy. Don’t know about you, but this picture from a few years back is right on in that it shows his personality which has only been enhanced with his age. If you have had the pleasure and opportunity to meet him you will know what I am talking about.
Once again and with much appreciation, thanks
Jake, Beth, Jack, Luke & Grace
Posted on September 6, 2013
Jack Burke, NF, MRI’s and Progression
If you are reading this then you were probably redirected from facebook. The last 24 hours has been very challenging for us. As you may know, yesterday Jack had yet another MRI. Again, he came through it amazingly well and is a very courageous 8 year old. I’m saddened to say that he has become used to a process that no child should get used to. Ever. I posted the update yesterday about his courage and a few hundred of you responded with very positive feedback. While the scan went well the results were a cause for alarm from his doctors. We were asked to immediately bring him to the emergency room to be seen my a neurologist. At 8 PM last night we checked into the emergency room and based on some observations and discussions it was decided to admit him. In a matter of hours NF fucked with us again. The attending doctor began to tell us that he will likely need surgery within days so they can put a shunt in his brain to relieve pressure that has been created causing his headaches. I was devastated. This was not happening. No F’n way. But it was. Quickly, Beth and I decided that we would need consensus from others doctors that this was the path to go down and although they were prepping for brain surgery they were not going to do anything until we got our answers. In a matter of hours it went from imminent surgery to let’s step back and watch for a bit. He will likely need a procedure and I won’t go into details on that yet. For now we observe, engage with him and consult with his physicians. In the very near future we will scan and see what shows up. Of course if things get worse we will react as well with appropriate and informed action plan.
At this point I want to share a few thoughts:
1. Thanks for being interested and caring. You have NO IDEA how much it means to us and Jack that you comment or “like” the updates. It reassures him how much support he has behind him and I truly believe it gives him strength and confidence to look right at the needles as they go in while we turn away (literally). He is scared but not fearful. He is courage in every sense of the word.
2. You may feel that we share too much of his story to the world. We debate about this often and have asked opinions of some of you. Our decision is that by sharing with others who care it raises awareness and hope and gives Jack support that we otherwise could not get for him in this very tangible way. I suggest if you like these updates then get ready for more. Many of them will hopefully continue to be positive but we are going to present the whole picture to you where ever it leads. He wants us to do that too. “It will make them think about me and the other kids Dad.” If that is too much for you I suggest you stop following me and CureNFwithJack on Facebook. And if that is your decision it has no change on how I feel about you…it’s all good. I get it.
3. Know that you are appreciated whether you give your time, talent or treasure or all three! If you are reading updates, commenting, liking, emailing, tweeting, researching or just lurking you are impactful. If you want to do something more, if you want to ask me any questions about our challenge just let me know. It’s cool.
4. If you are here you may be discovering Jack’s page for the first time. This is a work in progress and a labor of love from our good friend Casey Fox who was Jack’s nanny a few years ago. Come back and visit for updates and events.
Thank you
Jake and Beth
Jack , Luke and Grace