Jack woke up every morning and said "so what adventures are we going to go on today" and whether it was to the clinic, play dates, farm, zoo, or just playing in the driveway with his friends, he would end each day saying "whew, that was a busy day" he would thank us and go to sleep. So, as we end Jack's final adventures here on earth, surrounded by those that loved him the most, it is only appropriate that we thank you.
To our family and friends, you have been our salvation during the last three years. We've watched you struggle with how to comfort us, but by offering us your time, kindness and laughter, you have fulfilled our every wish for Jack's life to be happy, normal, and surrounded by love.
When we moved into our neighborhood we truly felt at home. We soon realized that families search their whole lives for the kinds of closeness that this neighborhood fosters, and we were blessed with receiving it the first day we stepped foot in our house. We are so fortunate for your generosity, respect and of course chicken parmagian - thank you..
As we watched Jack grow over the past 5 years we have been able watch his little friends grow up to be amazing children. Their ability to love unconditionally and the friendship and compassion they extended towards Jack and Aidan is a true guide to the amazing parents that they have and the incredible people that these children will become. They have truly been our greatest gift.
To our doctors, nurses, child life specialists, families and friends at the Floating Hospital for Children, we are thankful every day for the skill, and support you have provided our family. You have cared not only for Jack's health, but also for the well being of our family as a whole. You have made what is a difficult journey one of dignity, camaraderie and love.
To our extended family at Sentient Jet, simply said, you have given us the gift of time. A legacy we hope to pass on to other families in Jack's honor.
What we ask of you now, as we live on in Jacks memory and start our new life with Aidan and Thomas is not be angry but rejoice in the life that Jack was given through your love. To follow your own words of inspiration to us, that through his story of strength you have taken the time to live everyday as an adventure, hug your children more and revel in the value of time.
We have ended all of updates over the years answering the frequently asked question, "how do you do this" and as we have always proclaimed is that we gained strength through Jack. Most importantly, stay true to your own faith, it is an amazing guide.
Jack Lynch our sweet angel 11.20.06
It is with great sadness and heartbreak that I am writing this update. After Jack's 4 1/2 year valiant life of adventures Jack Edward Lynch passed away yesterday morning in our arms at the Floating Hospital for Children. However heartbroken we are as a family, we are comforted to know that he is finally at peace, pain free and holding hands with Pop-pop, Grandma Magella and his other little friends that he has befriended at the clinic during the past few years.
Jacks final days on this earth were a celebration. On Friday night we were able to get an amazing window of time that Jack was himself, feeling free of pain and playing with Aidan & Thomas. We had a party in his room with balloons, crafts, photos and movies. Jack played from his bed and entertained us with his demand for juice and attention; it was nothing short of magical. We were blessed with this time to see him so happy holding his new brother surrounded by those that loved him most. As the evening progressed his health began to decline and it was apparent to Ed and I that our lives were about the change. In the middle of the night I pushed our hospital beds together and we held hands all night. Ed, Nicole and the boys stayed at the Neely House so we could all be close together. In the morning hours Jack had a few revelations. He told Dr. Pelidis and myself after a painful episode that he was done, I told him that it was okay to be done and to not be afraid, a few minutes later he told us that he was no longer scared. Those last declarations have given us a great deal of peace that only Jack in his infinite wisdom could give us to continue to live on with his memory. Ed and I held his hands during his final moments, talked to him about his amazing life and the peace he was going to receive. It was the most difficult thing we will ever have to do in our lives, but as we have always said, we gained our strength through Jack and always followed his lead, he taught us that straight through the end.
Today as we sit in our house surrounded by family and friends we cannot help but be thankful for the love that everyone had for Jack and the friends we have made through his story and impact on the world. Our second family at the Floating Hospital, the doctors, nurses and families we have grown to love have been our salvation and helped us get through this with love, happiness, dignity and confidence that we have made all of the right decisions for him to live the most fulfilling life possible considering his limitations. We would have been lost without them.
As we struggle to talk to our friends and family we are constantly conscious of the children left behind, how will Jack's friends begin to understand and process the loss of their best friend. Jack's friends have summed it up best with the following quotes. Kira, his cousin and best friend, said that she was happy that Jack could be with pop-pop and that they could run and play together without pain. Nicholas whom we have spoken about often told his parents that he was sad that he could never play with his best friend again, but then decided that wasn't true and that he could play here on earth and Jack could play with him in heaven. His other buddy Jack was at our house today and told us that he really missed Jack, but understands that Jack has hair now. Jack's best girlfriend Julianna, who will miss him dearly, has been thinking about him today and sending notes to God to give to Jack. Davis said on his own yesterday, "When I die, my spirit will get to play with Jack's spirit" . Halle made a turkey in Sunday School, each leaf had "I am thankful for" and she put ...Jack Lynch. We are so grateful for these children for bringing so much joy to Jacks life and for the love and friendship they will give to Aidan and Thomas in the future.
Over the last 3 years Jack has touched so many lives in more ways than we can imagine. We have received hundreds of cards and letters and we are always amazed at the connection he could make with people and how they were drawn to his bright smile and dynamic personality. He taught us a great deal about life and what is important. The irony of yesterday was that while we were in the hospital with Jack, hundreds of people were donating blood at a drive in his name in North Andover. They had a record breaking drive with over 150 in attendance and 47 people that had never given blood before which is amazing. Thank you for everyone that attended it was truly touching.
We had to have our talk with Aidan yesterday morning to try to explain to a 3 year old how is best buddy and big brother has gone to heaven and is with Pop-pop and is playing and running and doesn't have booboo's anymore. This was the hardest thing we have ever had to do. Surprisingly I think Aidan really does understand some of it as he has not asked us once where Jack is or when he is coming back. Aidan is an amazing kid that I hope will remember his brother from pictures and video and from all of our friends and families telling him Jack stories in the future.
Ed and I will be finalizing our plans for Jack's services tomorrow. We do know that the wake will be on Friday at the Doherty Funeral Home in Stoneham and services on Saturday at St. Marie Goretti's in Lynnfield with Father Tom Powers and Mary the Chaplin from the hospital. We will post the information on the event page of www.jacklynchfund.com and please check the obituaries this week for times. The services will be a celebration of Jack and the adventures in his young life, please join us with your fondest memories to celebrate and reflect. Thank you for respecting our privacy during this very difficult time. In lieu of flowers please send donations to The Jack Lynch Fund so that we can continue to make a difference for other kids and families battling this horrible disease (info on the website).
With much love, Dianne, Ed, Nicole, Aidan & Thomas
Jack Update 11.14.06
It has been a long time since I have written an update during which we have had many ups and of course our usual downs. As you all know Thomas Jarrod graced us with his presence and has made our lives a joy. He is a great little baby and Jack and Aidan are in love with him. As Jack said recently, "I think Thomas loves his new home." We all agreed. As we prepared for Thomas's arrival we once again tried to continue our family adventures. Jack was able to make it to a few more days of school, which he loves and regularly hit the clinic for his transfusions. We were able to start the ABT-751 drug that we had anticipated; we figure anything new to his system is always worth a try. He had to take 5-6 pills a night for 7 days and then wait for 21 days for the next dose (we are currently in that time frame).
Ed took over clinic duty for me once TJ arrived and did an amazing job, except for being manipulated by his son to buy him presents every visit. He has enjoyed the clinic time and the one on one time with Jack, as he didnt get to do it before. We are incredibly fortunate that he has been able to take a temporary leave from work so we can all be together, it has truly been a gift to us all and everyone at Sentient should be very proud of the support you have given our family. Time is the one thing you cant buy and you have all given us time to be together through this.
The kids have hit every birthday party on their very busy social schedule (kira, nicholas, olivia, sara & julianna) and had a fantastic Halloween. They attended the neighborhood parade on that Sunday, Jack got super charged with blood and platlettes on Monday and they hit the street by 5:00 on Tuesday dressed as blue and green power rangers (jack was blue) - TJ was a peapod. They trick or treated with Julianna and Will and hit every house on our street in record time. Jack did most of the trip on Ed's shoulders then walked up to every house on his own to personally selected his beloved gummy lifesavers and plain hershey bars, we all have a great time. In the past month, Jack started physical therapy for his walking and he was improving daily thanks to the keen eye of our friend Brett (he owns Partners in Rehab) that realized it was primarily his Achilles / ankle.
So, unfortunately as I write this email we are in the hospital and are on day 7 of what could be a much longer stay. Jack has not been able to hold his platelets more than a day or so and ended up in last Sunday for a series of transfusion after his mouth started to bleed. FYI, he lost his two bottom baby teeth and new ones are growing in - did you know the tooth fairy brings Curious George videos. Anyway, we made it home by Monday to go back in on Tuesday with an extremely high, life threatening fever. By Tuesday afternoon his fever hit 106, he needed blood and platelets, his lungs started taking fluid and the worse of all he has gas due to fluid pressure that is incredibly painful. The doctors had me call Ed and tell him to get to the hospital immediately as they werent sure what was going to happen. We were able to get the fever under control and he is being treated with IV antibiotics for the blood infection that caused the fever.
The bigger issue now is his fluid overload, pain, and increased swelling of his liver due to the disease. We have spent the week trying to get his pain under control along with balancing his electrolytes - basically balancing everything. He has not slept all week, as the cramping pain is something that is excruciatingly painful. They have him on a morphine PCA that is a constant infusion, but he has once again built up an incredible tolerance to the drug and they are trying to put together another treatment plan which will help manage the pain and allow him to rest. It is by far the most helpless we have felt in three years of battling this disease and someplace we had always feared the most not being able to comfort Jack and control his pain is the most infuriating of emotions. As some of you may know, it has always been our goal as this horrible disease progressed that as long as it is safe and he was comfortable, that we keep Jack out of the hospital and at home with the family as much as possible. It is where he is truly the happiest surrounded by his brothers, toys, and in our bed. As we try to achieve this goal this week we are also looking at a major life changes for Jack once again. He has not been able to eat, so we will need iv tpn, his lungs are a shot from all the pressure so he needs oxygen 24 hours a day to breath comfortably, and of course a lot of pain meds. He is also very weak from the infection and discomfort so has not been walking very much and will probably be in bed.
Every day with Jack is a milestone and a gift, we fought to keep him around long enough to meet Thomas and be a part of his arrival and we have been blessed. Beyond that we are just taking this day by day and trying to bring Jack comfort and peace. Our families have all been in during the week from MN, AZ, MD and Littleton to spend time with Jack and play with Aidan. Our friends and neighbors have been such a great support with dinner and babysitting and as always we are thankful for everyones support. Nicole and my Mom have been amazing, it is so difficult to deal with this everyday as we all do and they have been such a salvation for Ed, Thomas, Jack, Aidan and I that we are amazed everyday by their personal strength to support us
A quick Jack story, he has had constant oxygen blowing on him to keep him breathing comfortably. This morning he decided that he didnt want them blowing on him anymore so we have rigged up the oxygen to hang from the ceiling to blow down on him and we put Thomas the Train and Pokemon stickers on the cover so it was fun looking. Jack called me over and told me that he thought the oxygen should be scented like cinnamon toast. Love the way he thinks.
As I end every update, thank you all for giving us our personal space and understanding our lack of communication. We will update the website with any major changes, but that could be tomorrow or in a month, in the meantime please keep us in your prayers and thoughts. Just a quick reminder, the Jack Lynch blood drive in on Saturday in North Andover if you are sitting and wondering what you can do for us GIVE BLODD AND PLATLETTES PLEASE!!!!
On 10/10/06 we welcomed Thomas "TJ" Jarrod Lynch into the world. He weighed in at 9.4 lbs (runt of the 3) and 20 1/4 inches long. Unlike his brothers he is laid back, easy going and has been the perfect new born. Mom and TJ are doing great and should be home by Sat.
Jack and Aidan were there to welcome TJ and were so excited...... It was really special to have them both there. More to come soon.
Jack Update – 9.29.06
Things never really settle down at the Lynch household, but we have been trying to muddle few the past few weeks and enjoy the rest of the summer, despite all of the chaos in our lives. First of all, thank you all for your kindness, donations, sympathy cards, and the neighborhood food patrol, it has been a huge sense of comfort, relief and peace to know that you are all behind us in these challenging times.
So, a few major milestones, Jack started preschool again this year and has enjoyed it immensely. He was able to attend the first full week, one day the following and Ed took him to his first field trip on Monday - apple picking. His teacher has been so incredible and has welcomed him like a son and takes such great care of him. It seems he may even have a love interest - Hannah. She helps him collected "magic rocks" at playtime outside, and he said "aw shucks" like Clifford the Dog the first time she paid attention to him. It is very cute, he even blushes.
We were able to make our yearly trip with the Powderly's to Storyland a few weeks ago, and added in fishing, train ride, three playgrounds, and a lot of playing. The kids had a blast and it was great to get away.
The blood lab machine that we have talked about at length has arrived at the clinic, courtesy of a generous donation from our friends at Golf Fights Cancer. The machine is amazing and gives us lab results almost immediately to prepare the kids for transfusion, chemo, or to go home. Although this doesn't seem very glamorous it give us and the families something extremely precious - time. Every minute we are not in the clinic waiting for labs is time spent out and playing. Thank you!!
The Mom's are doing better. Linda has returned to AZ after staying with my Mom during her initial recovery and seems to be hanging in there, but still looking at a long recovery ahead of her. My Mom is adjusting to the quiet in the house, but has enjoyed spending a lot of time with the grandkids, her friends and my Aunt Marion - her cocktail buddy.
Aidan is awesome as usual. He is such a trooper as we have spent and extensive amount of time during the past month in the clinic. We have started Mom & me classes at a little gym, which he loves. He hangs with Grammy and my sister Sue has been coming in regularly to help out with his care and to spend time with Jack. He keeps us smiling and on our toes everyday. As Jack always says "that baby is trouble!!".
Both boys are anxiously awaiting the arrival of Thomas Jarrod, they have both decided that the baby needs to come out, and Aidan can't wait to be a big brother. So on that front, I'm huge (according to my very kind family) but still have a month to go to the official due date is October 28th. We have been working with my ob at NEMC (she is the best) to jump the date a bit so that we can spend some more quality time together it also helps that I have huge babies and this guys seems to be tracking the same ways as the boys - 10lbs +. So, the official arrival date is October 10th. We will have an amnio in the morning, and if everything is okay he will be delivered at 1:00 via c-section. We are extremely excited, Nicole nested for me and set up the babies room and Ed and I restocked all of the rest of the crap - so all we can say is "bring it on" the happiness a baby will bring to this house is truly a miracle. Wish us luck!
Jacks health has continued to be a challenge over the past month, as many of you know. He had a MRI after his first day of school three weeks ago to figure out why his legs were starting to fail him. The scan revealed that along with more disease progression he also has three more brain lesions that are not operable. His bone marrow tests confirmed our biggest fears that it had once again filled with tumor and was spreading fast. We immediately started a new treatment that includes a combination of 4 drugs and chemos that are taken orally at home along with cranial and spinal radiation to try and stop the central nervous system spread, and help him walk better. We have been in the hospital daily for radiation, and we have also been battling a blood infection that has put him on IV antibiotic at home for the past month or so (every six hours). The IV finished on Tuesday, and we complete radiation on Monday. We also added in a mega dose of radiation last week since his legs were getting worse and starting to cause him a great deal of pain. It seems to have worked and he is getting some relief and moving a little better on his own. For the most part he uses his stroller, or Ed & Nicole's shoulders for long distances and can move slowly, not quite steadily, on his own through the house and to play. He is on low dose morphine for pain management, but remarkably still doesn't complain even though he is acutely aware that his body is not working quite right - it is enough to break your heart, but a few minutes later he is trying to beat on Aidan so he keeps us somewhat grounded. He still requires transfusions a few days a week, and he has soft tissue tumor around his eyes that gives him intermittent black eyes (just in case you are wondering when you do see him).
Now that we have finished the radiation we were able to get a compassion release from Abbot Pharmaceutical and the FDA on the original drug were trying to start at NCI - the ABT-751. We are hoping to get this started in the next week or so with the goal of stopping the progression again. We remain optimistic that there are always new drugs that are being developed that extend our time together, but also want to make sure that he maintains the quality of life he has grown to love.
Jack continues to be the most amazing kid, regardless of the disease that is taking over his body, he remains happy, funny, loving and adventurous. Every morning he wakes up and asks us what kind of adventure is he going on today. Yesterday we had radiation, then met Sue, Nicole, Aidan and Ed for lunch, then took a Duck Boat tour through Boston. Amazingly enough we got home and he went over to play with his little friend Julianna and then a playdate with Kira. He never seems to tire, or give up, so as we have mentioned on many occasions we continue to follow his lead and are charged by his energy and life.
The truth is that we are at a major milestone with Jack's treatment and the disease has become to far ahead of us to successfully fight. We are currently focusing on his quality of life, comfort, happiness, adventures and family time. We are thankful to all of our friends for understanding our sudden drop of communication and hope that you continue to respect Ed and my need for family time. These updates are our easiest way to communicate difficult information with the need to keep our family and friends posted. We are especially grateful to Sentient Jet for supporting Ed's need to spend as much time as possible with the family, and for the days ahead with the new baby. They are a special group of people - thank you.
We will probably not update until after the baby is born with happy news!!! Thank you all for your love and support.
Lynch Family update – 9.2.06
Hi Gang, this is a smaller email than usual, and as some of you may know, not regarding Jack. What I have left out of my Jack updates, (because I don't think you can handle any more bad news) is that my Dad's health had slowly been declining during the past month. After a series of strokes over the past two weeks, and a lot of age related complications, my Dad peacefully passed away yesterday afternoon at the ripe old ornery age of 76. He was surrounded by his whole family and at peace with the idea of watching over us and Jack from above, we could all use a little help around here. We will be having a wake tomorrow afternoon at the Doherty Funeral Home in Reading from 4-8 pm and a small family memorial on Friday. The details will be in the Boston Globe tomorrow (thurs), unfortunately, I don't have it all together to give direction, etc.
This email is purely to keep my closest group in the loop, just in case I am crankier than usual. Please do not feel obligated to attend, but I thought it was important for you all to know. If I have missed someone, please pass this along.
Thank you all for you continued support. Dianne
Jack Update – 8.28.06
I will start this update by sharing with you a story about our neighborhood kids hosting a lemonade stand yesterday to raise money for Jack. AJ and Jake Burkhardt, Klye and Cody Young and Jake Chaff all live up the street from us and are older than Jack and Aidan but have played with them from time to time.
Yesterday when we got home we had a voicemail telling us that they wanted to come by and give Jack the money they raised. The all came to the door this morning and gave Jack and Aidan $130 that they had raised for Jack....it is amazing and I really don't know how to thank them other than to tell them we did take the money and took Jack and Aidan bowling like he told the boys at the door.
He has been bugging us for days to go bowling so we took them Candle pin bowling and they had a blast. My dad and Grandma Nancy are in town visiting so we all went for an afternoon of bowling. I have not seen them have this much fun in a long time. So thank you AJ, Jake, Kyle, Cody and Jake for your hard work, your passion to help others and know that you made a difference.
Jack has taken up a new sport....bowling. He demanded we take him bowling yesterday and we all had a blast. Non of us had been bowling in years and I can tell you that it was the most fun I have seen he and Aidan have in a long time. Grandpa and Grandma were with us and turned out to be the best bowlers of all. Grandma Nancy has game.
He had a full day in the clinic today getting blood and platelets and had to be given something to make him pee as he gained 2.5 lbs today just from fluid and wasn't peeing. After the drugs peed it all out in 10 minutes. He has become very swollen from the Decadron steroid they gave him to keep the swelling down in his brain. It makes him eat insanely and has made him crave steak. He has eaten an entire cow this week and has gained 7 lbs.
We still don't have any answers or real medical update at this point. He is not doing well and we are trying what we can but aren't sure what is going to happen. We don't know how long we are going to have Jack so we are spending every minute with him. For those of you who we aren't calling back or emails that have gone unanswered please do not take it personally but 100% of our time is on Jack. We ask everyone to think about him and say a few prayers. Thank you to everyone for the amazing support!!!
Jack
Update – 8.17.06
Thank you all for you kind emails and words of encouragement.
The day was a long one, but after a 6 1/2 hour "surgery" Jack is home playing with Aidan and his new Diego Rescue Command Center. We arrived at NEMC this morning at 8:30 am to check his counts and get a few iv's to get him ready and then they put him to sleep at 11:30 to start the first of the procedure. The whole thing starts with an MRI of his brain and the insertion of a "halo" to keep his head straight. Once the scan is complete (2 hrs), the results are sent to the "brainy" doctors that put together a 3-dimensional treatment program to "zap" the tumors. Unfortunately, the MRI showed two additional tumors along with the nasal cavity and left side of the brain. We are not sure if they arrived in the past week, or were to small to detect on the general MRI - we'll probably never know. Anyway, the timing was good and they were able to treat all four areas. The radiation portion lasted another 2+ hours, then they removed the screws for his halo and sent him to recover in the pacu. As usual, he awoke looking for his juicy and banana, then proceeded to demand chex mix, cookies and toast. He is also on a steroid that helps to reduce brain swelling, but makes him down right cranky and hungry 24 hours a day (some of you may remember the 9 lb weight gain last year).
Anyway, the final results are still out, but we are just thrilled we all made it out in one piece. As I had mentioned, the initial goal is to stop the spread of the existing tumors, and the radiation has a unique residual effect that continues to treat and reduce over an extended period of time. Our next steps is to help him through recovery, he is even more unsteady on his feet due to some swelling and ALOT of the "white stuff". I just took off his bandages and his spots look great. We head to clinic again on Thursday, probably for a transfusion, and continue his new chemo regiment tonight.
Ed has tomorrow off and we are going to enjoy a little "family time" and probably driving the Hummers. We are grateful for all of your love and support and appreciate your respecting our lack of phone communication. We are truly overwhelmed and hope you understand that these emails are the most detailed information and updates available. Some of you have asked for our home address - 105 Hickory Hill Road, N. Andover, MA 01845. The updates will soon be posted on the website http://www.jacklynchfund.com/
Thank you all!!! Dianne & Ed
Jack
Update – 8.14.06
I just wanted to send a quick update regarding the results of Jack's latest scans and treatment path. I know it seems like every email we send is not what we expected, and this one is unfortunately no different.
Jack's scans were worse than we had anticipated. As a result we were not able to travel to start his clinical trial as we had hoped at the National Cancer Institute in DC. Most importantly, Jack has two new major tumors / lesions located in the left rear side of his brain and left nasal cavity. His bone marrow is pretty close to packed with tumor and as we had anticipated he has extensive metastases to other areas of his bones. Although he is still happily running through his day, we have noticed he is quickly slowing down on his left side and leg which is a potential result of his brain lesion, so we are moving quickly to remove the immediate threat of his brain lesions. We were approved to use the state of the art Gamma Knife at NEMC to non-surgically stop the growth of these tumors. It is referred to as radiation surgery, using 3-D imaging and approximately 200 radiation beams which are directed at the tumor. The goal is to slow down or irradicate the tumors without having to surgically remove them. It is a one day treatment which we will be starting tomorrow morning, Tuesday, at 10:00 am. Although this technique is amazing, it is also extremely risky. Once again, unfortunately, it is our only real option at the moment to support Jacks quality of life as we know it and stop the risk of the tumors hemorrhaging.
We also started a new chemo regiment on Friday that involved a combination of 4 types of chemo given orally, at home and the clinic, which are designed to stop the blood flow to the tumor cells. With these two major changes combined, it is still our optimistic goal to get him slightly back on track to re-approach the ABT-751 trial in MD something this fall.
So, with that horrible news dropped on you, please, as always keep us in your thoughts, especially tomorrow and the coming days and weeks for this stuff to work. Jack went to spend the weekend with his best friend Nicholas on Saturday, they swam, made smores, played power rangers, picked blueberries and he ate Ed's whole steak for dinner. He is only slightly pissed off that he has to now swallow pills with his new chemo, but is thrilled with the two new Hummer ride-ons that Ed got for he and Aidan which are now parked in our garage waiting for him to ride when he gets home from the hospital. The amazing thing about the procedure tomorrow is that barring any major problems, he should be able to go home tomorrow night to recover. If you would like to send a card, please remember that in Jack's mind he is not truly sick, but has "things that need to be fixed." He always asks why he needs to "get well" since he feels fine - but he loves his mail, and I change the words to positive thoughts when I read them to him. Any happy thoughts and pictures would be greatly appreciated, and please don't forget Aidan, anything Jack gets we also add Aidans name to so they always feel equal.
Please forward this onto anyone that might be interested, and please forgive of ahead of time for not checking in with some of you personally, it is extremely overwhelming and our time is consumed with these decisions and the kids.
Sincerely, Dianne & Ed
Jack
Update – 7.24.06
To those of you that have been wondering where the heck we have been we are sorry. When Jack feels good we keep him very busy doing everything we can possibly do to make sure he is having fun and seeing and doing everything a 4.5 yr old kids wants to do, swim, hike, fish and play all the time.
The boys have named their new little brother. We were going to go with Ronan but Jack and Aidan said they wanted his name to be Thomas like Thomas the Tank Engine so that is it. We gave him a middle name Jarrod after my brother so TJ it is. We are excited to have boy #3 as it will make our lives easier than having to figure out how to manage a little girl, use the same clothes and toys. TJ is due to arrive at the end of October. Dianne feels great and looks wonderful!!!!!
We had the Harbor Walk a few weeks ago and Sentient got together and supported the event. I was amazed as 65 of my co-workers attended and walked to support the Jack Lynch Fund!!!! We were really touched by the show of support my new company showed us and the Floating Hospital. They raised $8400 and really showed how amazing of a company Sentient is and incredibly caring people. Honestly amazing as I don't even know many of these people that showed their support and came out to walk. Cant thank them all enough. We also want to thank all of our friends and family that walked with us, it is so great to have your support.
We spent the 4th of July with the Powderly's again and all sorts of friends showed up and the boys had a blast. Again, Jill and I were responsible for the fireworks that got a little carried away this year as I bought some small things and then a women gave the boys a box free that had large fireworks………….really large. It was quite the hit. We cant thank Mike and Kim enough for allowing us to visit Chateau Powderly whenever we want as they shock the pool for us as Jack cant go into non-shocked pools because of the bacteria. He and Aidan love to swim and we cant thank them enough either.
I have been traveling a good bit and it has caused Aidan to get pretty angry and upset when I am gone. Then I come back and they both want all my attention and it causes some pushing and shoving to say the least. Again during my travels Nicole has been a huge savior for Dianne as she helps us constantly with the kids and the house. I don't know what we would do without her.
Dianne turned 40 on the 12th and I had planned a surprise party for her yesterday but we had to cancel it as Jack's counts have dropped and the doctor told us to cancel the party. I also found out that Dianne knew about the party as I forwarded her an email with an update on a friends health and back in the email was my original email to everyone. She of course read it back and saw it. Didn't say anything until we had to cancel it. She was very thankful and sorry we couldn't do it.
Dianne and I took the boys fishing this morning and we had a blast. Caught 7-8 fish and then the boys were done after about 30 minutes. As I mentioned earlier the boys have a busy schedule and we keep them moving. They have also been hitting the Russell's house regularly to swim with their Grammy, they are like little fish themselves.
Jack and Dianne have been in the clinic an average of 3 days a week for checkups and transfusions. His recovery from the major chemo in the spring was less than stellar so we have had to dial it back a bit and wait for a recovery (much longer than we had anticipated). We are doing a high dose chemo now that doesn't cause as much damage to his counts -- meaning hospitalization, so we can enjoy ourselves a little and get him ready for our next major treatment steps. We have decided to follow a phase 1 clinical trial out of NCI - the National Cancer Institute in Bethesda, MD. The earliest we can start is August 14th, so we are doing everything possible to have a great summer and keep the progression of the disease at bay. In the meantime Jack feels great! He will start his next session of scans the second week of August, that will help us further determine what we plan on hitting him with in the fall - which hopefully includes a return to school and a little hair (maybe, being optimistic).
We had a great weekend and went on Saturday for a last minute trip to Hartford to stay the night with the Kurtz family. We all had a blast and the kids were so exhausted by the time we got home. Later on Sunday we drove to the North Shore to see the Pandisio's at their beach house where the kids played until they dropped. Was great to see everyone and had a great weekend.
We hope you are all enjoying your summers and the hot weather.
Jack Update and baby annoucement - 5.19.06
I know that the start of our updates are starting to get repetitive, but please forgive us for not updating earlier, we have been overwhelmed with treatment, recovery, travel, and what is left of our lives for the past 3 months. During that time we have been in the hospital for approximately 40 days, clinic 13 days, radiation 15 days, 18 transfusions, the list goes on.
So, to pick up where we left off, Jack finished his first round of new chemo and went straight into the 15 sessions of spinal / cranial radiation to treat the cells in his spinal cord fluid and brain. He was amazing!! We arrived in the hospital by 10:00 am, they put him to sleep, he was zapped, and then recovered and were home by 1:00 pm each day. Of course being the cute little junky that he is, he loved to be put to sleep and didn't fight going in every day. His most recent scans and spinal tap shows no sign of disease in the central nervous system, so far so good on the brain.
We were lucky enough to have a week off to rest a little and regroup and went straight into the second session of the high dose chemo to treat the lesions in his body. The chemo lasted for 6 days inpatient, of which Jack was a trooper, didn't get sick and was able to handle Aidans daily visits and running around the playroom. Unfortunately, we only made it out of the hospital for 2 days until we checked back in with a fever on May 2nd and we are currently still waiting for his counts to recover so we can get him home (day 19 of captivity - but who is counting). We are in isolation, 2 beds, 1 tv, his playmat and Mom and Jack going stir crazy. Ed was able to come in on Friday night and spring me for the weekend so I could hang out with Aidan and relax a little in my own bed. Aidan and Nicole have been coming in daily to play for a few hours which helps break up the monotony. We had a fantastic Mother's Day together in Jack's room, pizza, cake and a lot of laughing. Jack's counts started to recover over the weekend and then crashed again so we are still waiting - maybe Friday. It will be a relief to all be home together, to enjoy a little sun after the floods and isolation.
During Jack's stay we were able to do his follow up scans and unfortunately, again, they were not what we were hoping. His MIBG scan that identifies old and new Neuroblastoma cells showed that although the radiation eliminated the glow on the brain, a lesion infront of his spine and an area on the front temporal lobe, it looks as though the chemo didn't necessarily work on the rest of his body and even worst he has new lesions on both wrists and elbow. In a strange away it always amazes me how his body is able to fights all this crap - whatever we throw at him his body says "nice try, what are you going to bring on next." He is just about officially immune to low dose, high dose and whatever dose of chemotherapy we've tried. So the question again... what do we do now. First, we get him home with Aidan to rest. Although he is great spirits, or the best to be expected, his body has taken a huge hit during the past few months and will probably not be able to tolerate any immediate chemo until he recovers a little more, maybe a few weeks. You always run the risk of what will grow during that time, but for now a few days at the beach, acouple of play dates and a trip to Virginia to visit his Aunt Sue, Uncle Mike and a bunch of our friends is the plan is what is in the plan.
Jack's Doctor has been looking into an number of newer options that are being experimented with across the country, she is also currently attending the Neuroblastoma Medical Conference in LA. Of course I have been researching every option possible, through the internet, support website and friends. There are some chemos that he has never had (surprise), another type of antibody, and we once again will consider going on the road again to other hospitals that offer some clinical trials that are not available at home. What we do know is that we need a big change up to try and get ahead of this mess and be as positive as we can along the way. Wish us luck.
So, how about a few updates to lighten the mood.
Speaking of needing good news, did we mention that we are also expecting our third in October!! That's right, I'm 4 months pregnant!! So are you thinking - what are these people crazy!! Yes, we are, but incredibly happy. It was something that we had always wanted, and the kids are thrilled to have a new baby in the house. I even have them convinced they have to help changed diapers. Jack is compelled to announce the new baby to total strangers, and Aidan keeps talking about being the "big brother" and asking when it is going to come out. They are both demanding a girl, but we will not be finding out until "it" arrives.
Jack and the "Green Monster". the day before we went back in for chemo 19 days ago our friends at Fensway Sports Group Nick, Brian and Jay set up a day for Jack, Aidan along with thier buddies Nicholas and Catie Powderly got to Tour Fenway, walk on the field, sit in the dugouts and tour the Green Monster. To top it off, they got to sign thier names on the wall like the players and celebs get to do. Honestly it was amazing and is great to think that thier names are forever on that wall. they werent quite as impressed as they were focused on finding out where the Green Monster lived. Thank you to the Sox for a once in a lifetime experience.
Congratulations to Jarrod for graduating from St. Scholastic College in MN this past weekend - great job, we are very proud of you.
A heartfelt thank you to Greg and Eileen Ward, a few old friends from UMass, that generously contributed to Jack's fund. Greg successfully ran the Boston Marathon in Jack's name and did some amazing fundraising. It was incredible to see some of the names of the contributors, friends from my old days and some new ones that have us in their hearts thank you everyone.
We have to thank Outthink who has been hosting and managing Jack's website since day 1. John and Ralph have been amazing and we cant thank them and htier staff enough for supporting our family and providing everyone with an awesome website that has kept thousands of people updated on our progress over the last 3 yrs. John has an ill child as well so he understands how important having support is to fight the fight. if you need an amazing agency go to www.outthink.com .
On the same note, our new host is a company named www.golfbuzz.com and the owner Patrick Coulson. He and i met recently and he heard about Jack and offfered his services. I encourage you all to go to his site and sign up its an amazing site for you golf fans. Thank you to Patrick and his staff.
A wonderful group of Ed's new co-workers at Sentient Jet also have learned about Jack's story and also generously contributed to Jack's fund. Everyone there has been so supportive and helpful so we need to thank them.
Welcome to Deacon the newest addition to the Throop family, what a cutie congratulations Becca, Tom and Austin.
Welcome to Maria Dufour - the sweetest little girl has bless the Dufour home after months of waiting for her arrival. She is truly lucky to be joining such a special family.
Last but not least, the Tufts New England Medical Center Harbor Walk is June 11th. If you haven't already joined the team, please be sure to do so. Please click on this link http://harborwalk.kintera.org and type in Ed Lynch as the walker. We hope that you all can join us for a fun day for an amazing cause. Thank you
I almost forgot a funny Jack anecdote to give you a smile - since he makes us smile all the time. The other day I was standing outside of our room chatting with another Mom. Her son TJ asked how is Jack doing today (very funny kid - he told me I didn't look fat enough to be pregnant and the following day told me my hair looked orange, but that is another story). Anyway, I asked him if you knew what a caged animal felt like and at the same time we turned around and Jack had scaled the window frame of the door to his isolation room and was screaming "TJ are you watching Scooby Doo!!!" TJ simply said, yeah, that's a caged animal all right. On another bright side, he is able to escape at night with a mask and he proceeds to ride the hall of the hospital like "easy rider" on his red rider tricycle -- it is quite a sight.
Thank you all for being so patient with these updates, they'd be a lot easier to do if we had a few positive results sent our way, but we are still fighting and will do our best to let you all know what is in our future. We also have given up sending everyone thank you cards for the amazing support we get as we just cant keep up with it so please accept this mass Thank You for all the wonderful things you all have done for us.
Jack
Update – From Mom 3.26.06
Usually we like to tell you all the no news is good
news, but, unfortunately we have had a long hard past
few months since our last update. The last time I updated
we were getting ready for scans and doing some fairly
easy outpatient chemo. Things change so quickly in this
life I’m not really to sure where to start. Obviously
his scans were less than stellar. The existing disease
that he had in his skull, shoulder and both knees got
worse. He has new lesions on his ankle and a spot in
front of his spine. Also, our fear of the brain activity
has been renewed, Jack’s CT and MRI show cell
growth in the menengies of his brain (the lining of
the brain under his skull) and neuroblastoma cells were
found in his spinal cord fluid. So, we have two new
major things to deal with, first we needed to dramatically
increase his dose and change up his chemo to treat his
body lesions. On February 27th we checked into chateau
Floating for 5 days of transplant level chemo (carbo/iphos/vp16).
We were able to make it home on Saturday, but his counts
crapped out and we ended back in the hospital on March
8th and stayed in for 11 days. Needless to say Jack
has had it pretty rough. He basically stopped eating
for a few weeks and ended up back on the TPN (iv nutrition)
– he lost 4 lbs in 3 weeks (I wish I had that
problem). He had a pretty good amount of pain associated
with the side effects of the chemo and was also put
on morphine, which I’m still weaning him off,
and he generally was in rough shape. Of course he never
ceases to amaze us, he arrived home on Sunday night
after not eating and busted in to tortilla chips and
guacamole and ate half of my steak the other night –
he is trying to get big and strong before his Dad gets
home from his trip. So, as we continue to recover from
his chemo to treat his body, we also have to deal with
the brain – which is almost separate because a
lot of the body treatments do not cross the “blood
/ brain barrier” and will not suitably attack
the cancer cells in the brain. So, on Thursday the 9th,
Jack received his second LP (lumbar puncture / spinal
tap) and they replaced some of his fluid with chemo
(topotician) to treat his central nervous system (brain
and spinal cord fluid). We are currently waiting for
his counts to recover enough so he can start “spinal
/ cranial radiation”. Yes, it is as bad as it
sounds, he will be receiving 3 weeks of high intense
radiation on his brain and spine to try and eradicate
the newly growing cells. Luckily he has hit the 4-year
milestone, which makes a dramatic difference in any
developmental side effects from the radiation treatment,
it may affect his growth, but that is the least of our
worries at this point. The radiation will also create
nausea, exhaustion and potential headaches, and will
lower his counts. The trickiest part of this whole thing
is that we also need to get his second round of chemo
going so that nothing grows back while we wait to finish
the radiation or get his counts to recover. I’m
sure you can only imagine the amount of stress that
this causes. He will be getting intermittent chemo in
the clinic during the 3 weeks of radiation to try and
stay ahead of things, and then as soon as he is ready,
he’ll go back in-patient for the strong stuff
and more than likely will end up in for a few more weeks
to recover. He can only do two rounds of the transplant
strength chemo because it is to toxic for his little
body to handle any more than that. What a mess, but
our goal is to try and get all of this stuff done during
the early spring so that we can focus on a great summer
with less intense treatment for a while. So, there it
is all in a nutshell
Our crazy little monkey Aidan has been doing great,
besides missing everyone, he is well taken care of while
we have been away. He was able to come and visit us
in the hospital a few hours a day to watch TV and say
hello. My sister came up for a week to relieve Nicole
for her school break, my friend Cindy has been taking
Aidan on Fridays and my Mom and Carolin have basically
covered everything else. Nicole, as always, has been
amazing to have with us, the kids love her and she has
been a godsend for our entire family. Most importantly
Aidan is being cared for by everyone that loves him,
and most importantly he has fallen in “love”
with Cindy’s girl Sarah – so anyone thinking
Aidan is on the open market in his 30’s he is
spoken for – are arranged marriages legal in the
US?
A few other milestones in the Lynch family. It has been
a long haul with all of the therapy, hospital stays
and general instability – but, Jack is finally,
officially, potty trained. It doesn’t get any
better than listening to your kid pee on his own, without
any help. He’ll be embarrassed by this when he
is 20, but it brings his parents a great deal of joy!!!
Aidan has started to train himself by watching, so we
are on our way with him also!!
Aidan is talking like a crazy kid, and repeats everything
Jack says. Ed asked him to get his cup the other days
and he said, quite matter of factly, “No Daddy,
I don’t think so.” He has a wild sense of
humor and keeps us on our toes.
Ed loves his new job at Sentient
Jet. He has been traveling a great deal working
the PGA Tour network, the kids & I miss him terribly,
but it has been well worth it to see him so happy and
excited about this opportunity. He still has some more
travel coming up over the next few months but it will
subside soon. An awesome company that has been so supportive
of our situation with Jack.
Nana Smithers is coming for a visit this week from AZ
and the kids are extremely excited to play with her – she does a great lion act that the kids love.
Unfortunately, we had to cancel our trip to Arizona
for Easter because of treatment, but are hoping to get
everyone out to MA in the next few months.
I’d like to end with these thoughts. However horrible
this all sounds, Jack is as happy as ever when he is
feeling well. We played hard yesterday at the park and
visited some animals at the little farm. He plays like
crazy with Aidan and once his counts get a little better
will be able to see his friends to play. He has a smile
on his face 24 hours a day, unless his juicy is not
filled, or his chicken nuggets are delayed. He has had
to stop school, but is just as happy being together
as a family and we live for every happy, healthy day!!!
Optimism is hard to find sometimes, but if you know
Jack, you can only feel that way when you hear him laugh.
I’ll try to update in a few weeks. As always,
thank you for following us, and all of your thoughts
and prayers. Dianne
Jack
Update 3.10.06
So it has been a long time since I sent one of these.
Between my new job and Jack being back in the hospital
it has just been too tough to do it. I have talked with
some of you but wanted to make sure everyone knows what
the deal is so you don’t have to wonder.
Jack has been getting chemo for some time now and it
apparently didn’t work. We did scans last week
and found that there are NB cells in his spinal fluid
and membrane around his brain. That news has led us
to go in-patient and getting a full regiment of chemo
both traditional and a type of chemo that is injected
directly into his spinal fluid called ICE.
Needless to say he feels like shit. He is on anti nausea
meds and morphine around the clock to keep him feeling
ok. He has bone pain and mood swings but all in all
is doing ok. They told us we are going to be in for
a minimum of 10 days as they are going to start his
week of radiation once he recovers from the chemo. So
we are getting comfy here.
I am traveling a ton right now so for work that will
end after the Masters so until then Di has to be on
the job 24/7. She has done such a great job and I can’t
thank her enough for being such an amazing mom/nurse/doctor/wife,
etc. She has helped me focus on my new job and allowed
me to spend the time I have to without worrying about
home.
We have had to cancel our vacation to AZ as Jack wont
be able to travel so my hope is that we can get the
family to Boston in the coming month or so. We have
had to move Aidan around a million times so thank you
to everyone that has been there for babysitting we couldn’t
do this without you.
More to come soon.........
Mom's
Update 2.1.06
Finally it is here, the long awaited Mom and medical
update. I'm so sorry it has been so long since I have
written, although I find it therapeutic most of the
time it is therapy I try to avoid, so thank you for
being patient. As Ed has mentioned, our life continues
to be a whirlwind...everyday. Most days are great, we
are trying our hardest to live our lives as a "normal"
family (whatever that means). The holidays were amazing,
the kids had fun, we got to see a lot of our friends
and family and only made it in the hospital for a few
days after New Years. Jack has been feeling great, despite
his chemo schedule, and as you have all read, he started
pre-school and has been able to go at least once a week
and is really enjoying himself. Of course, maybe not
as much as Ed & I, we are just thrilled that he
is doing what any kid his age would be doing, most of
the time he doesn't understand why we make such a big
deal about it all and looks at us like we are crazy.
We're okay with that though.
As far as Jack's treatment goes, basically, we have
4 straight days of chemo (7 hours a day, outpatient),
then we go in the following week for about 3 days for
blood and platelets, maybe 2 days the following week
as he recovers and gets more transfusions, then we wait
for his counts to be high enough to start all over again.
Unfortunately, there is no end in sight to this regiment,
we are still a little behind the ball on keeping his
cancer at bay so we are on our second combination of
chemo and fourth round. We are scanning him after every
two rounds to see where we stand. The last scans we
okay, not great. It is so tough to get definitive answers
when nothing is really definitive in the cancer world
that we live in. The scans are designed to all work
together to get the best "look" at where we
stand. Jack still has disease in both knees, shoulder,
and back of his head, (not brain). One knee looks a
little worse, the others remained the same, and there
is an iffy spot behind his port that we are reexamining
on the 14th & 15th. The goal is to keep it all the
same, and best case scenario to see the spots start
to fade and eventually disappear entirely. It might
sound crazy, but the same is good, especially since
he feels so good and tolerates the chemo so well. It
can ultimately take a very long time to see any noticeable
difference in the scans, but we are willing to wait
as long as the disease does not progress any further.
So there my friends is the challenge, to use the least
toxic amount and type of chemo that kills the disease
without making him sick 24 hours a day. If this current
stuff we are using (cytoxin / topo) doesn't seem to
be keeping the disease in check we will have to ramp
it up again to prevent any further progression. In the
meantime, the best way to keep it all in perspective
for you all is that Jack is as happy as he appears in
the photos and has little pain (unless you consider
his daily shots). Does he have any easy life, no, he
tolerates more in a week then most people will have
to in a lifetime, but he is an amazing kid that makes
us proud to be parents everyday of our lives.
During a recent 5 day stay at Floating waiting for his
counts to come up we had one of many "talks"
about why we do what we do everyday. He wanted to know
why he couldn't leave his room and go to the playroom.
He proceeded to make a compelling argument that he would
be good and not get the other kids sick - he'd wear
his mask, he just wanted to leave his isolation room
for a few minutes. What you all need to know is that
in Jack's mind he is not sick, we never told him he
was, but that he was different and had to do things
that others didn't so that we could all works together
to make him big and strong. When he was originally diagnosed
he was to young to approach the subject of cancer and
sickness and the future toll it would take on his little
body. Jack accepted the life he lead and was to young
to know anything else. The thought of him thinking he
was always sick while he felt so good was more heartbreaking
a thought than the disease itself. It is also incredibly
important to us as parents for him to be able to tell
us when he is really sick, tired, has a fever, or has
pain, so that we could really help him get the immediate
treatment he needed at the time. So, back to the story,
Jack and I snuggled in my lovely creaking cot in his
room and talked for the first time about "why"
he lives this special life. I told Jack that when he
was born he had a few things inside him that needed
to be fixed and removed (sharkbite), and that his blood
didn't work as well as other kids. I stressed the importance
of him having a safe place in his hospital room when
his blood was "cooky" and couldn't keep him
safe so that he didn't get sick. We talked about his
medicine and transfusions that helped to supercharge
him to help his blood feel better so he can get "big
and strong" again. Jack's simple pure answer to
the conversation...."Mommy, I don't want to have
cooky blood, I just want to be a normal boy", it
broke my heart, but made me smile at the same time.
He is so special and insightful it is staggering. When
I explained that unfortunately, this is just what we
have to do, he said "okay, let's go play Rescue
Heroes."
So here is the good news. We celebrated Aidans 2nd birthday
on December 29th and will be celebrating Jacks 4th on
February 5th and Ed's 40th on March 1st (yes 40). Every
birthday is a treasure to us all, we never know what
each week, month or year will bring so we live for every
moment we can celebrate together. Our friends the Lapadats
came to visit from Minnesota, and of course we have
had fun with Ed being home for a few months which has
allowed him time alot of quality time with the kids,
it has been great. We are planning a trip to Phoenix
with Jarrod, Katie, Murphy and Dillon for Easter to
see all of the kids grandparents and aunts and uncles
for Easter. Its the one time we all get together each
year and we are really looking forward to the trip..
Aidan is awesome as always. He is talking like a maniac
and is testing his skills at forming whole sentences
along with a few strategic curse words (he may have
picked up from his Mom). Jack's doctors and nurses are
always questioning the bruises on Jack's head, for fear
his platelets are to low. I have to explain every time
that it is a result of some crazed wrestling match with
his brother. He had the indentation of a pair of Rescue
Heroe feet on the side of his head for about a month.
Jack gets his fair share of punches in, but they are
the best of friends and have mastered getting in trouble
together on a daily basis. We love to just watch them
play and run and snuggle together in the morning. It
doesn't get any better.
As you know, we have developed a special family at the
Floating Hospital and just recently lost one of those
special people to a long battle with Leukemia. Larry
Dalo was a special person that brought laughter, friendship
and love to the clinic everyday. He will be missed by
us all, and our thoughts and prayers are with his family
and wife Jenny.
And finally a quick thank you to Joe Lester and his
wonderful family and neighbors for the amazing holiday
light show fundraiser. We are forever indebted to them,
they are truly some of the kindness people we have ever
met and we are fortunate to have had them become apart
of our lives.
Thank you all for your continued support and we promise
to try and get update the sight as soon as we the results
of his next test.
Dianne
Jack's
First Day of School! 1.12.06
So today was a day that we never thought we would see.
Jack's first day of preschool. It all started a few
weeks ago when one of Jack's buddies in the neighborhood,
Jack Fay was telling Dianne about this boy in his class
that hadnt been to school yet cause he was sick and
that his name was Jack too. Turns out it was our Jack.
Last spring we had signed Jack up for two schools and
went thru the nightmare with the first choice of schools
that you all heard me talk about and never called the
other school. So all this time the women that runs Century
Preschool has kept Jacks name on his coat hook, name
on the wall and has talked about Jack and his situation
to the kids. She also showed them all the newspaper
article about Jack. It was amazing.
She also has a son who is now 28 who at age 4 had a
tumor and went thru chemo and is doing great. So she
totally knew our situation and apparently kept up on
things on the website. She is amazing.
So Dianne called her and set today up and got everything
ready to go. We told Jack about it a few days ago and
got him all fired up again. He put on his Thomas the
Train backpack this morning and was out the door. Dianne
and I were more nervous and emotional this morning.
We had cameras and cell phones ready when we walked
him into the school.
When we walked in we saw they had his name tag on this
coat hook and his teachers were there to welcome him.
They were so nice and he immediately felt comfortable
and ready to start school. We hung out and watched as
long as we could but knew we had to leave and let him
do it on his own. So Dianne and I left and were so excited.
We went home and waited for the pick up time at 11:30.
Dianne kept saying "its 1 hour into his first day
in school"...........we went to pick him up and
got there and he was playing with the other kids outside
and having a blast. Once he was done he came out and
was talking a hundred miles a minute and has talked
about it all night.
So we have been a busy family since my last update.
We had amazing holidays and Santa couldn't have been
better to the kids. Jack also was lucky enough to be
honored by Joe Lester and his Holiday Light Show. Joe
and his neighbors hosted an amazing light show in honor
of Jack and raised $$$ for the fund. It also got great
TV and newspaper coverage which generated nearly $5,000
from random strangers.
We had a man show up at our door early one morning with
the newspaper article in his hand. He said "you
dont know me but I was going to make my annual donation
some where else and I read this article and had to come
and find Jack Lynch". I was still asleep, I said
thank you so much and they guy walked away after giving
me an envelope. I came in and told Dianne and then opened
the envelope to find $2500 cash. I ran back out to speak
to the man but he was gone. Just an amazingly generous
and kind act that I wish I could thank the man more.
We spent New Years Eve with the Powderlys and Throops
at the house and had a blast. The kids played until
they fell asleep and the adults drank and ate until
12:05 and went to bed. Had to stay up and see how bad
Dick Clark looked.............wow I feel sorry for him.
We also had Dianne's sister Sue and her husband Mike
in town for the holidays and had a ton of fun with them.
Don't see them enough.
Jack is still doing chemo and starts again on Tuesday.
They are trying a number of chemo combinations looking
for the answer and haven't got there yet. Dianne will
update everyone on the medical stuff soon. Jack got
a fever at midnight last Tuesday night and we had to
take him in for a week long stay. It was not fun for
Dianne or Jack as we hadn't been in there in some time.
A funny Jack story...........so for Christmas, Dianne
gave Jack a glow in the dark watch and when he opened
it he got excited and said, "I love my ring clock"
and we laughed for 5 minutes.
We've posted new photos! The pictures are Jack and his
class on the first day of school and then he and his
best friend Jack Fay on his first day of school...........Jack
Fay showed Jack around and introduced him to everyone.
Quick
update
So we have been laying low and stressing about Jack's
latest scans which you cancer families will understand.
There is a tremendous amount of anxiety that leads up
to the scans and then peaks when you are waiting for
results.
So far, some of the preliminary results have shown that
nothing has progressed and there is nothing new. the
last scan which was a bone scan again came back neg
for new disease but showed the previous spots. This
is a huge victory as far as we are concerned as we have
kept the cancer at bay. Big win.
This week was a very special week as we had a Friday
night fundraiser at the Lester Light show. Joe is such
an amazing guy who dedicates his life to really just
being kind to people. We were interviewed for a few
different local papers and did a great TV interview
on NECN last night. We then went out to the light show
where we had Pat the Pariot from the Patriots and Wally
the Green Monster from the Red Sox there signing autographs
and hanging out with kids. It was amazing to watch and
I cant thank those guys enough for their time as they
made many peoples nights.
Jack had a blast but was more interested in going in
the house and playing with Joe's son Justin instead
of standing outside thanking people. We also had NECN
there live so it was a full night. Jack spent some time
with Santa who was there too and who told me that he
was embarrassed to call you.
Bright
fundraiser takes place in Tewksbury, Mass
Ed
has sent you a video!
...Four-year-old Jack Lynch has cancer. Friday night,
a man named Joe Lester is lending his massive Christmas
light show as a fundraiser for Jack. NECN's Ally Donnelly
has more on this worthy cause.
You'll need a version of Windows Media Player 7 or higher
to view the video. If you need to download it, go to
microsoft.com/windows/mediaplayer
The video player is supported by Microsoft IE 5.0 and
above.
UPDATE! Jack Lynch Fund
Holiday Light Show Fundraiser
Please check out the Events Page. This is an update
on the Joe Lester Holiday Light show to benefit the
Jack Lynch Fund. On 12/23 (Friday) from 6-8pm they have
arranged to have a few special guests show up and greet
light visitors and collect donations.
Special Guests: Pat the Patriot (only from 6-7pm)
Wally the Green Monster
Blades the Bruins mascot
Jack Lynch (of course)
Please make sure you bring the kids by or pass this
along to friends and family. Again we can' t thank Joe
Lester and his family enough for the kindness and support
they have shown us this year. They truly are amazing
people.
Happy Holidays to all and a Happy New Year.
Post
Disney Update
So I can't say enough about Make A Wish, Disney and
an amazing place called Give Kids the World at Disney
(links will be at the end of the update). We had so
much fun and were treated like royalty. Jack obviously
was the focus and anytime any of the employees saw him
they stopped and asked if we were having fun, if we
needed anything, etc. I can't thank them enough for
truly giving the kids a once in a lifetime experience.
We met a great family there the Pinon's from North Carolina,
met Mickey Mouse, Barney and Chip and Dale so it was
a great trip.
After coming home I had to make a tough decision about
my career as well and had to resign from All Access
as I just couldn't do the travel that was necessary
to do a good job. It wasn't fair to Pete and my coworkers
and I really just want to be home and spend as much
time with the family as I can and I couldn't do both
well. This was very tough as Pete and John have been
amazing to me and my family the last three years and
I will never be able to repay them. That said, I am
looking for a new job in the NE area. I am working on
a few small consulting projects thru the first of the
year and then will really focus on finding a new job.
As you can tell we have a great deal going on at the
Lynch house this holiday season. It's amazing how stress
free you can be when your only concern is making sure
you spend a ton of time with your kids and that they
enjoy the holidays...........We have had a full schedule
since coming back as Jack as back at Chemo the next
morning after we returned. He did 4 days of chemo and
back to the clinic more days for transfusions to keep
his counts up. His counts have been very low so we have
had to stay clear of other kids so the kids are going
stir crazy.
Awesome mornings the last few mornings as I have the
chance to lounge around with the boys in bed and watch
Barnie, Higglytown Heroes and my personal favorite the
Backyardigans. Aidan has caught a double ear infection
and a chest cold so we are off to the doctor tomorrow.
Confirmed...........double ear infection and sinus congestion.
The Floating Hospital's holiday party was today and
we had a great time. So nice what they do for these
kids and amazing to watch them get their toys and meet
Santa. They serve lunch, Santa comes in and he passes
out gifts to all the kids. All the kids, well parents
wait in line for hours to get the balloon from the "Balloon
Man". We were #58 when they were on 20..........so
Jack decided he wasn't going to wait anymore and just
cut in line to get his Blues Clues balloon. So the guy
said come on in...........I tried to stop him with no
luck. I think the Jack Lynch Fund is going to donate
money to have a second balloon man there next year so
that kids don't have to wait for hours to get the balloon
dog or sword.
Jack had his CAT scan today. Its a very stressful time
the scan week.............you stress about doing the
scans and then really stress to get the results. He
will have his MIBG tomorrow so the tension in the Lynch
house is quite high. Jack will also get a MRI as well
just to round things off and make sure we see every
inch of his body.
Di took the afternoon and night to go and do our holiday
shopping. She acted like it was hard work but she got
to be alone and go shopping all day so I am pretty sure
she had fun. We still haven't found the right picture
for our Christmas Card so I apologize now for those
of you who get cards in the new year. We just don't
have the time and focus to make this happen on time.
So at the Boston fundraiser my friend Scott donated
a weekend in FL on his boat fishing. Another friend
of mine bought the trip at the auction and invited me
to join them on the trip so I am going fishing in FL
this weekend. Sounds rough for an unemployed guy but
it is a much needed break.
Well, this is all for now. I really wish that more of
you could spend time with Jack as I really can't explain
what an amazing kid he is and is becoming. He is so
smart and sensitive. He is the toughest kid you will
meet and at the same time one of the most empathetic
kids as well. Jack's quote of the day today "Mommy
I am having a bad day"......... the anesticia really
makes them cranky. More to come.
I am going to close this out by saying that I am very
proud of Dianne as she really is amazing. She quit her
job and put her career on hold to care for Jack, she
spends most of her time with kids and watching bad kids
cartoons or playing with mindless kid toys and still
keeps a great attitude about everything (most of the
time). I don't tell her enough that I really appreciate
her and am in awe of her most of the time cause we dont
make any time to actually talk to eachother anymore.
Just running and gunning to keep Jack and Aidan out
of the hospital or emergency room. We talk about medicines,
procedures, bodily functions, coordinating schedules
to make sure we have things covered while making sure
that we deal with normal things like bills, dry-cleaning
and oil changes. I swear that having a kid with cancer
gives parents A.D.D. because our short term memory is
shot.
For you Bostonians please make sure you come out and
support the Lester Holiday Light show as they have been
kind enough to support the Jack Lynch Fund this year.
Info is on the website under events.
Well, our last day was the best. We started by sleeping
in and having a breakfast picnic on the floor of our room.
Mickey pancakes and all. We got VIP parking that was so
huge as we were 100 yards from the gate. We got there
to a Jack meltdown in the first 5 minutes because he wanted
candy. Then he and Aidan started fighting because they
didn't want to share the stroller so we knew we were in
for a short day at MGM. Dianne was excited because she
got to ride on the Rock and Roll Rollercoaster and loved
it.
We went directly to the Disney Playhouse Live show which
was a huge hit with the boys. We were in the front row
and there was a great deal of dancing. Although the boys
were shy at first they loosened up. From there the boys
were tired so we went back to the hotel pool and put them
in the kiddie pool and got ourselves margaritas. The Bears
game was on so I was happy as I could get updates every
now and again. Bears Win!!!!
The boys played in the pool with a few friends for 2 hours
and we had lunch at the pool and hung out. We then went
back in and I tried to get the boys to nap while Di went
out for a walk. I had no success and the boys and I goofed
off while Di was gone..............needless to say the
goofing around cost us later in the day.
The big event of the last day was the Christmas Parade
at the Magic Kingdom. We were delayed because Aidan took
his shoe off in the room and we didn't notice until we
were ready to board the bus 2 miles away. We had to get
off the bus and Di ran back to the room and got it.
We got awesome seats at the beginning of the parade and
the kids went nuts. Every character walked by and all
waved at Jack of course. Without sounding too sappy............i
learned tonight the power of Disney and the Magic. Seeing
Jack and Aidans faces as the characters came by and watching
them ooooohh and aaaaahhh was amazing. It was the best
feeling a dad could have.
On the flip side of this feeling was the feeling I had
when the boys started punching each other in the stroller
and screaming get out at each other. I was horrified.
We got to follow the parade up to the Magic Kingdom for
the fireworks and had great seats but the boys didn't
care..........Jack fell asleep and Aidan caused trouble.
The fireworks were incredible ofcourse.
the trip home was a tough work out as we had to turn in
the stroller at the gate and then carry two deadweight
kids to the bus and all the way home then a mile to our
room No, seriously...........our room was nearly 1/2 mile
from the lobby. You know when you get that room that is
so far from the elevator............there were only two
rooms farther from the lobby........we were sweating when
we got to the room.
So your next update will have plenty of pics. Tomorrow
is a full day as well. We are going to spend the day at
Give Kids the World as they have fishing and some rides
tomorrow so we are going out there in the morning to place
Jack's star on the ceiling (every kid gets to put a golf
star on the ceiling) and then we also have to make his
pillow case.........It really is an incredible place.
Our flight is at 4pm back to Boston where we will be picked
up by a limo again..........I am so excited about not
having to haul 2 kids and luggage.....we are so tired
and sore from this trip. My back is terrible as i feel
like i am 90 yrs old. The boys are so ready to come home
as Aidan said it again today "home daddy"? I
think Di is run out of steam as well as she has had to
sleep with Jack every night and i have got my own bed.......so
lucky.
Jack will start chemo again first thing Tuesday morning........no
rest for big Jack. My last day on the job will be Wed
and then I will do some hospital time and start looking
for a Boston job. I am going to take some good time with
Jack before the end of the year.
Day
#4 Update and adendum
So following my last email we decided to go into Downtown
Disney to the Marketplace and go to the Rainforest Cafe
for dinner. The kids were wiped out but we didnt care........just
through them in the strollers and went. I swear we have
walked at least 10 miles a day.....it's killing me.
We got on the bus and there were other kids on there
and they shut the lights out and all of a sudden Adian
starts hooting like an Owl..............so all the kids
are doing it and now we have every animal noise you
can imagine on the bus.........very funny.
There was an hour wait to have dinner so we went walking
around the market place which was very crowded. The
kids rode on the carousel and we went to look for a
few gifts for people. Well, we made a critical error
in that we went into the Costco sized Disney store and
the kids went ape shit..........Jack grabbed a Chip
and Dale DVD and pealed the wrapper off so we had to
buy it. Aidan grabbed a dino and then proceeded to pull
every football, basketball out of the bin and all over
the floor.
Needless to say we got out of there with a DVD and a
ball. The store was huge! We escaped and went back to
have dinner and there was still a 40 minute wait so
as bad as it sounds l put Jack on my shoulders (bald
head and all ) and went up to the desk to ask how much
longer till we were up.........she said 40 minutes.
We turned around and they called my name....she gave
us a wink and Jack a high 5. We got the best table next
to the tree and the aquarium.
Adian proceeded to eat an entire red crayon when we
weren't looking so he wasn't all that hungry when his
meal came. Jack just wanted his DVD.........so we ordered
some margaritas and turned the DVD on and looked like
terrible parents. But boy it was good........
Just had to add this to the day #4 as it was such a
fun night. Off to MGM tomorrow morning and back here
to the pool for the afternoon. We have the Magic Kingdom
fireworks tomorrow night........big deal here. Thanks
again to who ever sent gift bag and to those that have
commented on my reports and requested more. If you werent
one of them just keep reading them and dont say anything.
Good night.
Disney
update day #4
So today was the best day we have had yet. The people
at Universal Studios were incredible and went overboard
making Jack feel like a VIP. We started with two grumpy
kids this morning as we had to wake them up to go to the
parks.........they are almost as tired as we are.
We got to Universal and figured we would just go slow
and take it all in and found that there were a million
things to do there. We went to the Jimmy Neutron show
first and thank god Jack was too short to get on the ride
part cause it would have scared the crap out of them.
It made me dizzy.
We went to the Barney show first and were amazed as they
sent us up front and then Mr. Peek A Boo asked us to stay
after the people left the room. After the show she came
out and asked Jack if he wanted to see Barney and through
the door Barney came. We got pictures, talked with him
and got to keep some of the leaves that fell during the
show (dont ask). Jack and Aidan were so happy.........it
was amazing to watch.
Then we then found the Curious George water park.............best
park of the visit. They had so much fun........we didnt
have a change of clothes and told them to not go in the
water. That lasted about 3 minutes........Aidan went right
in. It was the coolest park. I found Aidan drinking the
water, pushing other kids out of Jack's way to get to
the big fountain and finally found them both sitting in
the water and just said have fun.
Needless to say we finally got them out after an hour
and had to use a changing blanket to dry them. We then
became the tailor trash family with kids in diapers in
the stroller. We went on a mission to find them T-shirts
and found two matching scooby Doo shirts (they have them
on in the picture) to keep them warm while their clothes
dried.
A women in the store approached Dianne and asked her if
she needed pants/shorts that she could lend her some.
Di laughed and said thanks but they got wet............like
we were in need. It was very nice but gave us a great
laugh.
>From there we went to the Animal
Planet Live show and again were amazed at the VIP treatment
as they brought us in to the front row and then asked
us to stay after to meet one of the pet stars. We had
two kids in T-shirts and diapers so they thought we were
insane I am sure. After everyone left they brought out
one of the star dogs and got pictures and hung out with
the host of the show. It was very nice.
We have just got back to the room as we are exhausted
and the kids were at the end for the day. Crying, screaming,
hitting...........i finally reached that point in a parents
life where you look around and think about who you could
dish them off on. Dianne went into a store to try to find
a Curious George T-shirt and left me with the boys who
as soon as she walked away went insane. They both stared
crying and trying to run away to find mommy. I had the
two of them in my arms at one point looking around like
make me invisible please. Di came out laughing of course.
So back at the room we are resting and trying to figure
out if we do room service or go out to dinner as we are
all wiped out. Which ever one of our friends who sent
us the very nice gift basket you have to know that it
was perfect as Jack was melting down because he wanted
candy and Aidan was just crying for no reason........we
walked in the room and they saw it and both stopped. So
thank you to Mickey's Pals...........
I hope we get the energy to go out tonight but if we dont
here is a picture of the boys as soon as we got back to
the room. I am running out of steam so day 5-6 updates
could be shorter than 1-4. Check out www.gktw.org
as it is an amazing place that give thousands of kids
a wonderful time while here at Disney.
Disney
update #3
So today was Sea World and it was very cool. We started
the day by attending the Barney breakfast at Give Kids
the World (www.gktw.org)
which we had to do about an hour of prep to get Jack ready
to meet Barney. All went well and we met Barney got some
good shots and had a great breakfast as well prior to
Sea World.
We met a great family the Pinon's whose little boy Gabe
has leukemia and is doing very well and lives in Raleigh.
Just a great couple who had some ties to MLS oddly enough
as the father Ed played some soccer and had a chance to
play with the Rapids and chose to have a family instead.
We ended up hanging out with them all day and had a great
time. Their oldest Eddie and Aidan had a ton of fun as
did Gabe and Jack until Jack bit Gabe. He just got excited
and bit him on the arm as they played and it started our
day off with both of them crying. I watched the kids while
Sally, Ed and Dianne went on a roller coaster (I hate
rides) so Di was thrilled to have riding buddies.
We ended up losing them when we left to do diaper changes
and waters and didn't hook up with them again but had
a great time with them all the same. We did get to go
and pet the sting rays and feed the dolphins. Jack got
a VIP spot to feed the dolphins and we got some great
pictures. He really loved it. Aidan slept thru the entire
thing.
We then hit the wall and the kids had a melt down following
the dolphin show and we had to hit the room and rest.
We woke up and went for a long walk around the boardwalk
and tried to tire the kids out to no avail. We stopped
and had dinner outside and just got home.............unfortunately
as I am sitting here in my pj's we realized that there
was a huge fireworks show on the boardwalk. No one told
us and they didn't have it listed anywhere.......just
our luck we missed them.
Something that I wish I could bring to life for those
of you who haven't been able to spend time with Jack is
his sense of humor, empathy, sensitivity and sense about
people........today in the lobby of the hotel there was
a magician and Jack ran up and sat in front of him. He
of course was asked to get up and help the guy (only bald
kid in the audience) and he loves the spotlight/stage
as he really was amazing with the guy and the other kids.
Later in the night we ran into two of the kids who said
"hey there is Jack"........it was very cool.
One of the kids jack ran up and hugged...........just
hard to explain what an amazing kid he really is.
Aidan is just out of his mind funny. He is a total handful
and tests us constantly. He runs away, doesnt listen to
a thing and will do exactly what you tell him not to.
However, he is great with Jack most of the time...........they
are very funny together. He definitely has his mothers
"strong ways".........
So tomorrow is fishing at GKTW and the Universal Studios..............dont
know what to expect really. We are all exhausted so we
are going to bed early to that we can all be rested for
our last two days. No pics tonight as i am too tired to
unpack the camera........i will send some tomorrow......
A huge shout out to Make A Wish..........we have been
treated like kings and they really now how to make these
families forget about why they are here...........such
an amazing place.
Night!!
Jack
& Aidan Disney update Day #2
So today started with us all being wiped out from last
night so our start was a little late but we got to the
Animal Kingdom in time to see everything...........i mean
everything. This place is huge. I really needed to train
prior by walking 10 miles a day with a 35 lb kid crying
in my arms or hanging on my shoulders. My back is killing
me.
We went on the great Safari trip in a truck and saw all
the animals we needed to in Africa then on to Asia where
we saw more animals....We stopped to have lunch at this
little cafe in the jungle where as we were eating ducks
came out of the woods and started eating scraps and so
of course Aidan had to get down and chase them around.......it
was funny to watch. We also had Jack come down with a
case of fear of the characters........not good as we saw
Winnie the Pooh, tigger and crew and got to the front
and Jack went into meltdown for some reason......he said
they scared him. So we ended up at the Dinosaur park with
all 4 of us exhausted. So we decided to skip a few things
and go back to the hotel and nap.
We were resting up for our big Thanksgiving dinner at
the Give Kids the World complex. (this is the Walmart
sponsored complex where all the Make A Wish kids stay).
We would have stayed there but it was sold out thru the
end of the year so we decided to stay at the Boardwalk.
Was a good call as the GKTW is about 20 minutes away from
Disney.
We got there just in time for the dinner which is served
to all the families by about 30 volunteers most of whom
where retired people that just donate their time. They
really are amazing people. Great meal but the kids started
to turn into evil little creatures and were reeking havoc
in the dining area so we had to get them outside.
They were also have a special night tonight with Santa..............yep
kids on laps, pictures and even fake snow falling in the
complex.........pretty funny seeing these snow blowing
machines and kids running all over the place. I stood
in line for Santa and Mrs. Santa while the kids and Di
played..........Jack kept coming to check on me and practice
what he was going to say to Santa "where are your
raindeer"? And I have been very good so I want more
trains".........Aidan was his usual bull in a china
shop self and was screaming when Di took him from the
playroom to get his picture. And of course, he pooped
right before it was our turn on Santa's lap...........so
Mrs. Santa got a surprise........we didn't care just wanted
the photo.
They had a ton of toys for the kids once the picture was
done............Jack couldn't decide which one he wanted
and Aidan jumped into the bin of stuffed animals and rolled
around like a pig in the mud. We were so proud. To end
the night, as we were walking back to the car we noticed
that the horse and carriage were still there. They were
supposed to be done at 9pm and it was after 9..............they
saw Jack and made one more trip just for him. We were
so excited because we were telling him everything we could
to get out of it cause the first guy had told us no because
it was late then another guy came up and told him one
more for Jack.
On the way home we had great plans of going to the Magic
Kingdom for the late night fireworks or for a walk on
the Boardwalk but once we got lost on the way home and
Di and i scrapped with one another followed by Jack falling
to the ground screaming in the lobby of the hotel because
he couldn't have the pen and notebook that another kid
had we knew it was time to just call it a night.
Again, this place is amazing and the people couldn't be
nicer to us. We are off to a Barney breakfast in the morning
and then to Sea World for the day followed by a few more
countries at Epcot so Di and I can get the margarita we
missed the other night..........
More tomorrow............
Disney
update Day #1
So our trip here to Disney started with a limo picking
us up and the Fay family there to send us off with hugs
and cheers of have fun. The kids thought the limo was
the coolest thing. Our flight was uneventful but once
we landed we were met by a volunteer (Mo) who was a 77
yr old man who did not stop talking for 1 hr. He was so
nice but boy could he chat.
Our hotel (The Boardwalk) is amazing and the people were
incredible. We went to Give Kids the World last night
to check in and get our info. The kids had an awesome
time with the small rides and toys. Sponge Bob was there
and jack was terrified of him so we thought we were going
to have a problem since Jack got VIP with all the characters.
Our first day at the Magic Kingdom was once in a lifetime.
We have to wear these Make A Wish badges and anyone that
works there treats you like you own the place (or I guess
a kid with cancer). The passes we have allow us to cut
to the front of any line which in some cases saved us
2 hours. Thanksgiving week is a very busy week here at
Disney.
As we walked into the Magic Kingdom I knew it was going
to be a good day as we ran into Mickey and cut in line
and got a great picture with him and the boys. Then got
pics with Goofy, Chip and Dale, Donald Duck and was terrified
of Woody from Toy Story for some reason. We hit the rides
too and had a blast although Jack was afraid of some of
the rides where the lights went out.
Then the boys ran out of steam (Di and I were exhausted)
so we went back to the hotel and rested for a few hours
so that we could go back out to Epcot and see the fireworks.
It had gotten chilly out and we walked what felt like
10 miles so we decided to grab a glass of wine in France
and move on until the fireworks started. Well, what do
you know, every country has a different drink.........we
only made it to Morocco and sat and watched the fireworks
which were amazing. Jack crashed out and fell asleep but
Aidan was wide awake.
The boys were so funny together holding hands all day
and making sure they didn't get lost. Jack said his favorite
thing of the day was meeting Mickey.... more to come tonight........Happy
Thanksgiving to everyone!! and Happy Birthday to Grandpa
Ed.
Jack
Update 11.19.05
The Jack Lynch Fundraisers were amazing!!!! We had many
more people come out this year and although we fell
short of our goal we had an amazing experience seeing
all the people that came out to support our family.
A special thank you to Jen Karpf and Jen Lowy from the
National Sports Marketing Network for organizing the
events are doing all the work to pull off two very successful
events. www.sportsmarketingnetwork.com.
We couldn't have done it without them and are forever
grateful to them and their volunteers.
Additionally, thank you to all of you who attended the
events in Boston and NYC as we were very humbled to
see how many people came out as we had 130 in Boston
and nearly 200 in NYC. Just amazing. Thank you to all
of you for your donations and for bidding on the auction
items. The best items I have seen at an event like this.
We are going to be having an online auction soon with
some of the items we received late or items that didn't
go at the two events. Look for that soon. Great opportunity
for holiday presents.
Unfortunately Jack wasn't able to attend as we are trying
to keep him healthy so that we can go on the Make A
Wish trip on Tuesday to Disney. We figured him being
around all those people was just too risky. We leave
on Tuesday and are staying at the Boardwalk at Disney
for a week. Jack is so excited that Mickey is feeling
better now and we can go see him.
Jack is feeling good and has again lost all of his hair
with this chemo he is getting. He does ask when it is
coming back but we have tried to tell him it is really
cool to have no hair. Look at Michael Jordan, Bruce
Willis and his buddy, Uncle Jay Pilcer. He is getting
chemo this week so that we are ready to go next week
with no hold ups. All should be ok.
Again thank you to everyone for your support and attendance
at the events last week and we will post pictures from
Disney when we return.
Jack
Update 10.21.05
We have been living in this wonderful state of denial
again as Jack has felt great through this whole chemo
treatments. He has been keeping a social calendar that
would tire most adults. How he has made it through this
last treatments as smoothly as we could have hoped for.
Dianne has been amazing keeping on his daily routine
of going to the clinic and doing chemo and then on to
a fun activity. Each day is a different activity like
the zoo, museums, fairs, etc.
We went to the Topsfield fair last week and road on
an elephant. Yes, Dad on an elephant can ya believe
it. I am sure the picture swill be on the site soon.
We also had a ton of fun looking at the largest Pumpkin
in New England. Not every day you can eat fried anything
on a stick, see spitting lamas and watch Americas Most
Wanted run the guess your weight game at the fair. I
swear AMW needs to go to all the local fairs and find
the people they are looking for as they are all there.
Jack has felt great over the last few weeks and has
handled the chemo like a trooper. The out patient treatments
are so much better as we dont have to live in the hospital
and they get to go and play after treatment is over.
We have had to prepare ourselves for this week as he
starts his scans this week. We live in this false state
of comfort while Jack feels good and we are at home.
Reality is coming this week with his scans.
This false sense of security is about to come to an
end and that is stressful. We have so enjoyed the last
few weeks as Jack has felt great, played hard, gotten
strong again, grown up fast and has gotten so smart.
We have had a blast. We went pumpkin picking last weekend
which was fun except for the very windy conditions.
You should have seen how excited they were when they
saw a field full of pumpkins.
Last night I started to assemble a kitchen island cart
that we bought as we have no storage and needed something.
It had 8 million pieces and instructions that were made
for Bob Vila cause I wasnt sure what it said. There
was a ton of Styrofoam in the box and the boys were
trying to play with it and I told them No....it was
messy. As I focused on putting this thing together I
really wasn't paying attention to the boys in the TV
room and after 15 minutes I realized I heard an odd
noise. I went in the room and found the boys covered
in Styrofoam head to toe as well as the entire room
and path from the box to the room. They had been breaking
it up and scrapping it so it made snow. I wanted to
yell and scream as the house was a disaster but seeing
them having so much fun I said go ahead but stay in
this room. Dianne was at a meeting so I sent her a picture
to her phone and she thought the ceiling had fallen
or something.
When Dianne walked in she was horrified at what she
saw but she too saw them having so much fun we couldn't
be mad. A glass of wine and we sat and tried to figure
out how the heck we were going to clean it up. Thankfully
Nicole was home today and said she would figure it out.........she
is a lifesaver on a daily basis.
So Jack and I spent the day in the clinic together yesterday.
He was scheduled for a CAT scan and an MIBG injection.
Dianne has been honored to be invited to sit on the
hospitals board of governors which is a huge honor and
one that she is very excitred about. Yesterday was her
first board meeting and orientation so it was all day
so I had to go solo with Jack. Again Di and I have divided
up responsibilities and knowing his meds and procedures
is not my job so I was a little nervous. We arrived
in the clinic with a full day schedule of tests, scans
and play and it all went haywire from the start.
Usually they sedate Jack and put the contrast (nasty
stuff you have to drink prior to a CAT scan) in via
a tube but they wanted to see if he would drink 10 oz
of it via a bottle. We tried for an hour to bribe, negotiate,
barter, force, trick and beg him to drink it with no
success. So as we got closer to the CAT Scan time the
more we realized it wasn't going to happen. So they
sent us for his vascular ultrasound because they are
doing surgery on Friday to put in the new port in his
chest since the last one was infected after 2 yrs of
use. So they are putting in his chest on the right side
so he will have matching scares on his chest.
He liked the vascular nurse and had fun. When we got
back to the clinic to watch videos, lunch and get ready
of the MIBG scan we walked in and all his friends were
there playing......Maddy Swift, Michael Garfield and
a few other kids. I started talking and forgot that
jack still has to be isolated while in the clinic because
of the C-Diff that he had. So I got yelled at ...........not
good. We then hung out in the room until our next appt
and Jack and I played with his new Care Bear and talked
about his grand parents coming to see him and that Uncle
Jarrod and Murphy were going to come and they were going
to jump on beds he said. Just before we were to leave
to go get his MIBG injection they asked if I had given
him his SSKI which is a drug that protects the liver
from the MIBG......long story. Dianne and I had not
gotten the voicemail from the clinic about this..........so
we had to get the drug and wait another 4 hours before
they could do the injection......so back to the room
we went. Jack was a great kid all day long and had all
the nurses in Nuclear Medicine loving him as he was
handing out candy and telling them Happy Halloween.
I have no idea how Dianne does it quite honestly as
a full day in that hospital is so draining not only
physically but more mentally. I was a mess when I got
home last night. She is incredible.
A few Jack sayings: What?, You have a bad attitude!,
Daddy, I think Aidan needs to go to sleep...., Aidan
did it!, Mommy be nice to daddy!, When I was a little
boy........., I can do it myself dad, mind your own
business and my personal favorite from yesterday was
I dont want to grow up and get big......i like being
little.
So, Jack has scans today and surgery tomorrow and hopefully
by Monday we should have some idea of how well these
last rounds of chemo are working. We thank all of you
for understanding our not being in touch the last couple
of months as we are really just trying to enjoy every
minute that Jack feels good and have as much fun as
we can. We are also working with our friends at NSMN
as they are hosting two more Jack Lynch Fund fundraisers
before the end of the year. On November 14th in Boston
and early December in NYC. We will send out the info
as soon as they are finalized.
Final thoughts: Special prayers go out to Maddy Swift
this week as she is havin gher follow up scans as she
has been in remission for months and is going to stay
cancer free we just know it. Also, to our buddy Duke
Dawson and Michael Garfield as well. Special thanks
to Grandma and Grandpa McCaffrey as they have been watching
Aidan while we are doing clinic with Jack this week........thank
you so much. Note: make sure you
leave messages on the site as we do read them when there
are new ones. Dianne will send an update following the
scans this week.......
Duke
Update 9.28.05
To all Jack's friends,
This is the address for our little friend Duke Dawson
in Chicago who is on the same path as Jack and started
stem cell transplant #1 today. If you get a moment send
him a card, crafts, games or have the kids draw him
pictures as you did for Jack. They are in for the long
haul and need the help to keep Duke occupied in that
room for a month or so. they are special friends of
ours so we want to help.
Patient Hanley "Duke" Dawson c/o
Children's Memorial Hospital
707 W. Fullerton Ave
4th Floor West
Chicago, IL 60614
773-880-4000
Jack
Update 9.27.05
We have had quite the crazy week in the Lynch world.
As Ed mentioned in his last update, we ended up
in the hospital on Saturday night after our exciting
day at Storyland. We were a little slow leaving
the park (Jack and I hit the Polar Coaster on last time),
but made record time from Laconia to Boston. We
were incredibly fortunate seeing that Jack did not get
a fever as a result of the infection, so he was feeling
great and had a blast catching fish. Aidan had
no interest in the fish, he just wanted to throw acorns
in the lake - he was very busy. We got the
hospital by 8:00 pm, checked in and started on IV antibiotics.
It turns out that the infection that started in
NYC didn't go away after 15 days of IV antibiotics and
returned after only 5 days off medicine. Not a
good sign. As the week progressed, we hit obstacle,
after obstacle, and after 6 nights in patient we finally
made it home Friday night.
Jack had surgery on Wednesday to remove his port,
when his Doctor removed the device, it was totally infected
and nasty, we were lucky to get it out when we did without
any damage to anything else. They were able to
put in another "pic" line in his arm after
a day so we could continue with antibiotics - which
we will continue at home 4 times a day for 13 days.
I have only made it through half a day and it
is a grueling schedule for all of us. A few other
highlights of the week, he had an allergic reaction
to his platlettes during surgery and when I finally
got to him he looked like a naked tomato and very irritated.
We got back to his room and he was put on isolation
because he developed C-dif, which is a nasty intestinal
infection as a result of all of the antibiotic - it
is highly contagious (via poop) so we got stuck in the
room for the rest of the week. The C-dif gave
him horrible cramps and just overall nastiness, and
the most ridiculous butt rash imaginable. Even
worst the treatment is oral medicine that is the worst
tasting stuff in the world...of course he is also on
that at home 4 times a day for 13 days. Not including
a few other meds thrown in to keep things interesting
- and of course his shot every day. If I'm
not a certified nurse yet, I will be by the time I finish
this latest mess.
But, despite all my complaining, Jack is great! Happy
to be home and playing with Aidan, and his butt is a
little better (which makes life much easier). The
most amazing thing about this is that we had just finished
a 5 day course of chemo the prior week and he did great,
no nausea, or any side affects, and we got to do it
all in the clinic. Aidan came in with us for three
of the days and had fun following Jack around. He
is so in touch with Jack's world it is staggering at
times. The other day he was playing at the house
and found an alcohol wipe, the calling card of a kid
with cancer, he picked it up, brought it to Nicole and
said "Jack". How does 22 month old baby
know these things??? He was able to visit three
time in the hospital, he plays on the mat, hangs out
in bed with Jack, watches tv and can maneuver around
his IV like and old pro, he is very gentle when Jack
is "hooked up". Which, if you've ever
met Aidan, is not his style.
So, what are Jack's next steps as far as this therapy
goes, we are still not entirely sure. The good
thing is that all of his tests, CT, MRI, Urine, Bone
Marrow, are negative - except of course for his MIBG
that shows two spots on his scull (not brain) and right
knee. He is currently receiving chemo to treat
those spots and whole body and brain. We will
probably do a few more rounds of this combination and
then scan again to see how it is going. Ed and
I have also decided to pursue radiating those area also,
the combination seemed to have worked on the other spots
that are entirely gone, so we must being something right...who
knows? The good thing is that the so far
(knock on wood) the chemo hasn't totally knocked out
his counts so we can still be out and about. And
of course he is a great about going to the clinic and
just about anything else that involves his therapy -
he just goes with the flow. As of course we all
do. Everyday is an adventure in our house, no
plans are told prior to 1 hour of leaving the house,
so there is no disappointment if we can't go, therefore
our whole life is full of fun surprises. Tomorrow
we are going to Edaville Railroad to "A Day Out
With Thomas", he has no idea, and won't until
we pull up into the parking lot (we have a 6 hour window
in between IV's to check it out). He will be so
excited I think he'll pop.
As Ed also pointedly mentioned, he was not able to
attend his first day of pre-school which we had hoped,
and now with his new set-up probably won't until we
get the pic line out and a new port inserted (seeing
that his line is hanging out of his arm). Yes,
we are bitter, but Jack doesn't seem to mind, I had
purposely told him that school was something you visit
when we are not in the clinic so he does really know
he's not missing anything....yet. We are hoping
to get him starting in October - wish us luck.
I had to travel to DC on Thursday night for work and
stayed at the Jackson house which was so much fun as
usual. Davis calls me either Jack Wynch's dad or Mr.
Wynch.........he is very funny. The kids have grown
up so fast......amazing. We had an odd day on
Saturday..........absolutely nothing to do or scheduled
to do. We did go and have brunch with the McCaffrey;s
so Jack and Aidan could play with their cousin Kira........they
had so much fun and missed her so much. We didn't know
what to do with ourselves for the rest of the day with
nothing to do. I actually took a nap with the boys which
i havent done in years......
We are working on another fundraiser in NYC and Boston
in the coming months so we will keep you up to date.
Also, We went to see Thomas The Train on Sunday...........wow
was it fun to see Jack and Aidan's excitement when we
got there. They had so much fun and didn't want to leave.
It was such a special day for Jack he had really wanted
to see Thomas for a long time. He will be home for a
week before he starts outpatient chemo again. Update
soon....thanks everyone.
Jack
Update 9.18.05
Well the journey continues. It started with Jack not
being able to go to his first day of school because
a parent forgot to get their child immunized and chicken
pox is the one thing that could kill Jack so he couldn't
go. We pleaded with the school to change days for him
to go with another group so they did................then
the night before he was to start they called again and
apparently there was another kid that had just gotten
his/her shots and it is a live vaccine so he again couldn't
go. I have never been so angry in my life as Jack was
so happy and excited to start school. He had been to
the orientation two nights before to see the school
and play for an hour or so.
Dianne and I again pleaded with them to call the parent
and explain the situation and ask them to please hold
their kid out for one (1) day so Jack could go. Only
one day because we knew that his counts were going to
crash once the chemo kicked in so he would only get
one day in for a few weeks anyway. The first day was
really important. Needless to say this selfish and obviously
insensitive, arrogant parent said no to our request.
(if I could find out their names I would do something
pretty dumb I am sure). We had so many emotions going
on after the phone call..............it was really unbelievable.
Our
friends the Gaffney's were kind enough to offer us their
lake house up at Lake Winnesquam so we went up on Friday
night and the Powderly's came along last minute to really
make sure Jack had some fun. The lake house was so amazing!!!!
Jack has been trying for months to catch a fish and
was very sad that he hadn't caught one yet. So the minute
we got out of the car we went down to the lake and got
a line in the water...........He finally caught one!!!
This lead to he and Nick catching about 20 sunfish...........they
had a blast (pictures soon).
Unfortunately, Jack had some tests on Friday morning
that came back positive for a bacterial infection but
they didn't get the tests until yesterday (Sat) morning
and they called us to tell us to come home immediately
and get Jack in the hospital. Thankfully, our cell phones
didn't work very well so we didn't get the message until
1pm while we were at Storyland ( a little kid amusement
park in NH). The kids were having a blast ...........
So we had to immediately rush back to the lake house
and pack up Jack and Dianne so they could rush to the
hospital. Unfortunately the timing is horrible as he
will have to be in for at least 2-3 days for this to
get antibiotics and then his counts will crash from
the chemo he got last week so he may be in for 5-7 days.........so
now he will really miss school.
I will send a more detailed update soon...........special
thanks to the Gaffney's for the use of their lake house
as it was truly the most beautiful place we have been
in a long time. The kids didn't stop playing the entire
time we were there. So thank you for allowing Jack to
catch his first fish........he hasnt stopped telling
people since we got to the hospital.
Thank you to the Powderlys for joining us as Jack
loved hanging with his best friend Nicholas........they
had so much fun fishing. Nicole had to chase them around
all day so thank you to her as usual. Also, good luck
to John and Karen Benvenuto as they are expecting their
second child this weekend!!!!