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We are working on a detailed update but have been insanly
busy so i thought i would post something fast so everyone
knows where we are and what is happening.
We are back in Boston for at least the nex few months
for sure as the treatment at Sloan Kettering in NYC worked
but Jack's strong little body developed an anti body
to the antibody so they kicked us out. The NY trip was
amazing and we learned a great deal about the disease
and how we can battle it. We met amazing people and were
at the best cancer facility in the world and cant thank
the people enough. His nurses were incredible and his
doctors were exactly what we had hoped. The other families
we met were such troopers and so welcoming to us while
we were there. The dickinson family who we met prior
to going there were our buddies that we hung out with
and got treatment with in the same room. Jeremy is a
tough little kid who is going to get thru this as well.
We are back in Boston now and doing outpatient chemo
and going to be doing radiation as well. Our doctors
from both hospitals have been working together to find
the best treatment for Jack. We really are impressed
with thier willingness to "play in the same sandbox" and
appreciate their professionalism.
Jack starts pre-school tomorrow which is a big deal in
the world of pediactic cancer as most people never think
they will see the day........as did we. Di and i are
both giong to go to school tomorrow as Jack is so excited
to start school and "meet new friends". The
school has bent over backwards to make him feel welcome
and ensure his health as they have asked families to
be sensitive to his situation. They have also allowed
us to come and go as there are going to be days that
Jack isnt going to be able to go because of chemo so
we thank them!!
We are very excited to be back at Floating as we missed
our friends there (i know that sounds insane but if
you have to be somewhere this is the place to be). Jack was
so excited to go and see his doctors, nurses, child
life buddies as well as all of his old playmates.
Agian, we are doing a more detailed update but wanted
people to know what the deal was and know that we are
trying to get in as much fun before the chemo again
kicks his ass and he is in lockdown. We have booked
every minute to make sure he and Aidan have a blast
and get to see all thier friends. So if we are not
around, dont return calls or emails, etc just know
that we thank everyone and are so appreciative of everything
you do for our family. A special thanks to the Griffin's
for taking us into thier home in NYC while we were
there for treatment it really saved us and we are forever
thankful to you.
Also a special thank you to Nicole our live in nanny
and friend who has been absolutly amazing to our family.
she has kept us sane, given us time to recharge and
allowed us to try to be normal. She has also played
referee at times and is wise beyond her years. Thank
you to her family for sharing her with us this year.
We couldnt do this without her.
Thank you to John Cooney and Omer Jilani who played
in the Golf fights Cancer Golf Marathon earlier this
week and played 104 holes to raise money for GFC and
Jack Lynch. You can still make a donation to the cause............we
really thank you guys! Good luck this week to Duke
Dawson a good friend in Chicago...........!
Update to follow soon....... |
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We are so sorry we have not written an update in a few weeks,
everything is moving so quickly and changing daily that it
is hard for even our family to keep up with us. As many of you know, we are in NYC currently on our second week of the anti-body treatment at Memorial Sloan Kettering. We were delayed by a week based on Jack's updated results. It seems that after further evaluation of his scans he still showed residual disease in the right hip and left knee (the primary areas that he had originally relapsed). They held back his therapy for a week to add an additional element, but luckily we still qualified for a different phase of the 3f8 protocol. We left for New York last Friday morning to collect his medicine and get started over the weekend. We had last minute glitch with our accommodations and are grateful to Amy, John, Jack and Lizzy for letting us stay at there home for the weekend, it is beautiful and Aidan actually got to sleep in little Jacks crib - he's always happy in a crib. We moved into All Access's corporate apt for the past two weeks which has made out life much easier seeing that we traveled as a family with Mom, Dad, Jack, Aidan and Nicole - it's cozy, but it's nice to have a little home away from home during this ordeal. Thank you to Pete and John for allowing us to stay there. We had a great weekend playing in the city, it is strange to be back, but we have enjoyed every minute of it and taking advantage of all the fun kid stuff. We
went to the beach in Ct. with the Buesse clan and the kids
had a blast, hung out with our buddy Nicole Snow on Saturday
night (wait til you see the picture of the piggy back race
on the west side) and then played in the Park on Sunday.
Monday was the start of his therapy,
and as I promised, I'll give you a description of how it
all works. We are in NY because Sloan Kettering is the only institution in the country that offers this specific immunotherapy specializing in Neuroblastoma. This is the best explaination I can come up with, without attaching a copy of his protocol. Neuroblastoma cells are a natural part of the human body. Those cells have the ability to stay within your body as regular cells, hanging out, or flip like a switch into active cancer cells which eventually grow to tumor, bone marrow, etc. To date, no reason is known as to why this happens, it just does (which drives Ed crazy). Anyway, as far as the immune system goes, it does not identify the neuroblastoma cancer cells as disease (because it is natural part of the body), therefore the disease continues to grow without any defense. Sloan has created an element, that is made from a mouse antibody, that is able to identify the neuroblastoma cells, attach to them, and serve as a marker for your white cells to identify and fight the neuroblastoma cells. This is how it works, Jack is given a series of shots (GMCSF), that I give him at home for 5 days leading up to the therapy, and then daily for the 2 weeks of therapy. The shot is a super booster than dramatically increases his white cell count to create an "army" to attach the nb cells (ex: jacks average white count is about 4000, it goes up to 23,000 during the shots). He has also added in glucan, a natural barley derivative that has anti-nb properties that he takes orally that also make the white cells stronger. Unfortunately, it is a large quantity of bitter clear goo, that like tastes like crap, and is also taken daily leading up to and during therapy (for every dose he takes, jack & aidan get something from the treasure chest of kid junk, it makes life much easier). He also sucks on a lolly pop while he is taking it as it kills the bad taste. Starting on that Monday, we arrive at the day hospital, check his counts, get him hooked up for iv and then get started. He is pre-meded with vistril (anti-allergen / nausea), then diloted (pain killer which I have spelled wrong) and then he is infused with the anti-body(3f8). It takes approximately a half an hour for the infusion to make it into his system and then the "effect" kicks in. As we had mentioned, there is unfortunately a great deal of pain involved in the infusion process. As the anti-body attaches to the nb cells and the white cells start to attach, it creates tremors of pain within the nerve endings that can only be compared to labor pains. Of course the nurses do everything in there power to counteract the pain with the pre-med and rescue doses, but it is also important to know the stuff is working, and the only indication is the pain. The "effect" last approximately 40 minutes of intense pain, and then he falls asleep for anywhere from a hour to all day and night, it seems to be different every time. The most miraculous thing is that as soon as he wakes up from the diloted, he has absolutely no recollection of the entire process, and there is very little residual pain afterwards. Even more amazing is my young sons addiction to mind altering medication, he actually asks to come in every morning to the clinic so he can get the "sleepy stuff", much like his addiction to the "white stuff" anesthesia. He is so crazy, the other day he decided not to attend the talent show in the clinic so he could get started on the tubey stuff and get his medicine. As I'm sure you can imagine, as Jack forgets the pain, it is oddly harder on Ed and I to put him through it everyday, and is something we will never be able to forget. Personally, I still think I can deal with this stuff better than I was able to handle Jack's mouth care during transplant, it was something he remembered everyday and that tore my heart out 4 times a day, for weeks at a time. I
look forward to the day this all being a distant memory, with
no pain - physical or mental.
Ed has been working hard and being our
labor coach every day. I'm sure he would like me to thank Relay Sports for supplying him with an office space to work from everyday, he has been able to continue working daily without being entirely displaced from his office at home. I don't envy his schedule, he leaves before Jack and I in the morning, and I call him in a half hour prior to the "reaction", he rushes across town, gives Jack oxygen and cool packs until he falls asleep, and then goes back to work until about 7:00 pm. I can't imagine a better use of a lunch hour than being there for Jack and I. On
his spare time he is trying to find us a place to stay during
this process so we can keep us all together and avoid the Ronald
McDonald House as much as possible.
As he was at home at Floating Jack lights
up this hospital and is starting to charm all the nurses
and doctors. They have a great facility, beautiful playroom and a wonderful staff. This treatment is particularly grueling, and it always amazing to me how the nurses are able to come back to work every day, but as a parent, we are greatful to them for helping us through it all. FYI,
we miss our gang at home very much..no jealousy please,
we'll see you all next Thursday for our clinic visit.
As
far as New York goes, Aidan is a natural city kid - which
came to quite a surprise to me seeing that he is the
crazy outdoor kid. He is addicted to cars, trucks, taxi, anything that moves and stimulates, and this city really does it for him. He has toured the city with Nicole, and is having a blast, he has hit every park on the west side, art museums, and has been meeting up with us every afternoon to go museums, zoo and park hopping after Jack's therapy. So far, we have all gone to the Museum of Natural History (dinosaurs), Childrens Museum, Amusement park, train ride, Central Park Zoo, Time Square, bar hopping, and a bunch of park picnics. Jack also thinks that the taxi ride back and forth everyday is an amusement park ride and request the route through the park so he can count the tunnels. I think the hardest thing about being away is that the boys miss their cousin Kira and friends desperately, but they are also getting closer spending so much time together. Jack decided the other day (at 5:30 am) that Grammy would love Manhattan, and should come and visit - he misses her and pop-pop. We have been very fortunate to be able to overlap our schedule with his buddy Jeremy who is also going through the same treatment (we have mentioned him before). They are currently sharing rooms during the day and having dueling flat screen tv's with Barney blaring. His Dad Scott has been a great help to me everyday as I learn to manuever through a new facility, staff, treatment, etc. We
also got to meet Lisa his mom and Andrew his brother last week
and hung out with them for the day.
So, it looks like we are heading home
tomorrow for a two week break, seeing that we switched
protocols based on the change of results, we are in New
York for two week, the home for two weeks for four sessions. At that point they re-evaluate his current disease with the hope it is all gone, or has not spread. If we are in good shape then we will be added to the primary protocol that has an additional 4 sessions with a three weeks break. Basically, if his disease does not progress, which it won't, we are in this for about a year, then we will look into the next steps of therapy to keep the disease in check. In the meantime, the most important thing for our friends and family to know, that we do not see everyday, is that Jack is happy, healthy, active, hairless, fat, not in any discomfort (beside taking yucky tasting medicine and shots), and does not know any other life than the one he currently leads. He is well adjusted to a fault and is as "fresh" as any three year old can possibly be. When we talk about everything that we have to do with the doctors and going to hospital, all he knows is that he has some things that need to be fixed inside and we are working to make him big and strong. He is happy with that answer and has a gentle and unique understanding of his life and those of the kids he spends time with in the clinic. For example, today Jeremy threw up on his shirt (bad reaction) and Jack actually lent him his favorite Thomas t-shirt so he would feel better. Aidan, on the other hand, is as happy as he has ever been just being with the whole family for extended periods of time, and no distractions of our everyday life, and of course Nicole (babysitter) is spoiling him rotten and we love every minute of it. She
has been godsend - thank you as we couldnt do this without
you. She is also oddly enough a great middle-man for Ed and
I and referees our disagreements from time to time.
So, short and sweet this is not, but
it will hopefully cover us through our next trip to New
York. Our weeks home are entirely un-eventful and blissfully lacking in any clinic visits, chemo, low counts, etc. We are always thankful for our family and friends for standing by us - for Ed, keeping him sane, and for myself, giving me the quiet space that I always need and still being there for me whenever I'm in need. I am eternally grateful for you not getting angry for non-returned phone calls. (fyi,
my phone is dead again thanks to a poorly placed squirt gun,
so I have borrowed my Moms for the past few weeks).
I hope all is well with you all. If I haven't
covered anything, give Ed and call, he'll get back to you
quicker (ha, ha). |
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| So
we have officially moved into NYC and have tried to make
the best of it. Jack and Aidan think we are on a long “adventure”.
They have seen all the parks and playgrounds in Manhattan
while getting much better at eating out.
I am writing this as I am on a plane
to San Fran for work. A last minute trip came up and I
had to leave today and return on the redeye on Sat night.
It really sucks but I had to be here for this event.
Jack’s treatment started last Monday and we had to
come down to the hospital the Friday before so he could start
taking some of his pre meds. Every day before his treatment
we have to give him 6 syringes full of this tasteless clear
fluid that is thick like dish soap. We shoot a dose in and
give him a lollypop to suck on to kill the after taste that
it does have. We wait for a few and do it again.
After that we have to get to the hospital
by no later than 9am to start the treatment. I have been
dropping them off and then going to work until his treatment
starts. I come back for the tough part of the treatment
to help Dianne. She is a saint as she has again had to
deal with the medical things………its been tough
on her but she is really doing great.
The treatment is horrible……Dianne will give a medical description at some point but basically this doctor figured out how to create an antibody (from a mouse) that would trick the body into fighting the NB cells because the body doesn’t know to fight them. So they put it in and it searches out the NB cells and attach to them and the body fights them. The tough part is that the treatment takes about 2 hours and after about 30 minutes Jack is severe pain. The antibody starts at the body’s
nerve endings (stomach, fingers, feet) and for 40 minutes
he is writhing in pain. It so hard to watch and hear. Dianne
holds him in bed with her while I put ice packs on his head
and warm packs on his stomach. Both make them feel better.
They give him meds but nothing dulls
the pain that these kids have to endure. What gets us through
it each day is knowing that it is working and that they
are having success with it. We have described it as “Silence of the Lambs” because you can hear all the other kids that are getting treatment start to cry and scream………so
Di is going to start using her iPod to drown it out.
We have been staying at the All Access
company apt in the city which has saved us big time so
thank you to Pete and John. We are getting rid of it at
the end of August so we are going to have to move into
the Ronald McDonald House for the remainder of the treatment
or find a sublet in the city as the RMDH is always sold
out. Our schedule is 2 weeks in NYC and 2 weeks at home
and so on. We could do that 4 week cycle for up to 4 months
and they will evaluate him to see if we go on or until
he HAMA’s which is where his body creates an anti body
to the antibody and then he is done.
We have had to face reality since
coming to NYC as the first time around we lived in this
very positive state of denial and now have had to be informed
so that we could make the best decisions for Jack and it
has opened us up to reality. The hard part is you are just
trying to keep your kid alive long enough so they can find
a cure. Sloan Kettering is an amazing place and is the
leader in treating this cancer but they still don’t have
an answer. They have created a vaccine that clinical studies
are going to start in 2 months so we hope that this is something
that makes sense for him. The doctors and nurses we have are
amazing and do incredible things every day. We thank them for
what they do.
We decided to bring Aidan along with
us which was a great decision as he really was not happy
being away from us. He and Jack are so much fun together
and are really best buddies so they are both happier knowing the
other is there. We might start keeping him at home for
one of the two weeks but don’t know yet.
We have also met some amazing parents
and kids while in NYC. The Dickenson’s who I have mentioned
before have a boy Jeremy who is a little younger than Jack
and is doing very well. He is about a month ahead of us in
treatment. Ironically, when Jack was in remission I went to
meet them in NYC to try to give them some advice and experience
and now have had to come back and lean on them a great deal.
Scott and Lisa are incredible parents as they commute between
NYC and Albany as they have another son Andrew who they have
to take care of too.
That is all for now as I am about
to land in SF. It is so hard being away from them right
now as it is such a difficult time for him. Could be worse
I guess I could be gone for a week. I know we have been
MIA for the last week or so and we are sorry but this adventure
we are on is very overwhelming and has taken all our energy.
So thank you to all of you who have been there for us,
helped out or just offered to help. A special shout out
to The Shagrue;s and Equis for watching Harley while we are gone as well
as the Griffin family for letting us stay at their house
here in NYC for a couple of nights when we got in town.
The RMD house had a waiting list…………
A mom update to follow……….. |
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We are almost ready to set off on our next "adventure" as
Jack calls it. We leave for NYC and Sloan Kettering tonight.
We will be sending everyone an detailed update on what is
going on but i wanted everyone to know the basics. We are
embarcing on an intersting schedule of NYC for 2 weeks and
home for 3 weeks and do that over and over for up to 9 cycles. Luckily we have the Ronald McDonald House in NYC as our "resort" during
our stays and have a ton of friends in the area to have
some fun with while we are there. This first two weeks
is going to be very tough as we have heard is is very painful
and tough to watch your kids go through it. The nice part
is that his hair will come back, he wont have any of the
side efects that chemo had, it is all outpatient so they
can go play after and Aidan and Nicole will be along with
us so they can all play.
We will give everyone instructions on sending us cards
and things as we just dont know yet. You can contact
us via my cell at 978-265-2499 if you need to get us. Email
will work as well............
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| Jack Update
- Mom version! I love my husband,
but, sometimes he gets a little overexcited and doesn't hear
everything I say. (some of you didn't receive his original
email..so go with it) Yes, Jack tests results from Sloan Kettering
were great!! I just want to clarify the results and what the
next steps are so that our family and friend are all on the
same page - yeah, I'm freaky about the details. As Ed mentioned
the results so far are negative, but most importantly, we are
still waiting for two that will complete the picture before
we can positively say that Jack is free of disease and ready
to head to New York. The test we had last week are as follows:
MIBG - a scan that identifies Neuroblastoma on a cellular
level - tissue, bone, marrow. - Negative
Bone Scan - a scan that identifies Neuroblastoma cells
on or in the bone (not marrow) - Negative
CT - shows "mass" or tumors - Negative
Bone Marrow Aspiration - samples of marrow are taken from
both sides of his back and hips - Negative
Bone Biopsy - test cancer cells "in" the bone
- TBD
Urine - tests the levels of cancer markers within the urine
- TBD (imagine putting a baggie over a 3 year olds penis
for 4 hours and chasing him around with a bag as he plays
in the awesome playroom at Sloan)
If and when (I'm always cautious) we start in New York we
are looking an a grueling schedule. We will start as early
as July 18th and we'll have the antibody treatment for 2
weeks and then home for 3 weeks, then do that again for what
seems like forever..... I'll send another email next week
that will get into the details a little more, it is a lot
to digest. Unfortunately, as we entered the world of "relapse" we
are really not fortunate enough to use the words remission,
we have now entered the world of "NED" No evidence
of disease - which is awesome, but is how we will classify
his status from this day forward. So as we lived to fight
another day, our long term goal is to keep him NED until
a cure is found, whether that is next year or 20 years from
now...we can wait and in the meantime keeping Jack healthy
and happy during that time is our main priority along with
kissing Aidan until he can't handle it anymore (he doesn't
really have a choice, have you seen those baby cheeks). As Ed had mentioned, we have to commend NEMC / Floating
for their major part in helping us "kick the crap" out
of his relapse during the past few months. They are an amazing
institution that have worked with us since day one to help
us make the right decisions on behalf of Jacks care and we
are incredibly grateful to have them in our corner as we move
forward. We don't have Jacks doctors emails - jamie & carol,
please forward this onto the gang at NEMC. We love you all!!! I'm heading to Chicago next week for a Neuroblastoma conference
that educates parents on the latest and greatest in cancer
research for our kids. I'm not sure what to expect, but it
can only help further educate Ed and I on our future. A quick thought to our little Colby, Joey & Sophie...
thanks for watching over us, we think about you and your
families everyday. Love you all,
Dianne |
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| Jack's going to NYC-Great News! This last week has been extremely stressful as we knew
that if Jack was not accepted into the sloan Kettering program
that our battle was going to be one that was larger than
we had already had and would be back to the drawing board. Dianne just called me crying to tell me that not only did
Jack get into the program but he is in complete remission.
All but two of the tests came back negative and he is cancer
free so far.......we are waiting on one more bone biopsy
and his urine test but all his scans, bone marrow tests
were cancer free...........!! Great job Floating Hopsital
family getting us to the next step!!! I know i cant bring this one to life for you guys cause
i really cant believe it myself as i sit here balling my
eyes out at my desk but this was really the 3 point shot
at the buzzer to tie the game for us. This has been hanging
over us for over a month now knowing how important this
was to us. I am going home now and will call and email everyone a
more detailed update later..............this really is
amazing. I will tell ya this, his buddy Colby Dufour was
watching over him yesterday on his one year anniversary
of leaving us........... We love you all and cant thank you enough............have
a great weekend. Ed |
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| So it is a beautiful day here in Boston and we have been
busy since coming home last week. WE have done yard work
that we did nt get to in the spring, we did some home organization
that we have blown off for a year and have seen some friends
we havent see in some time. Jack had a bone scan on Wed that
was very nerve racking and i know we didnt share it with
many but waiting for the results was touch. If it came back
positive we had to go back to the chemo drawing board but
it came back negative so we can now go to NYC and start the
Sloan Kettering treatment. So that is great news!!! Dianne's mom had an accident this week and fell and broke
her knee so she is laid up in a cast for a few months so
the kids have been over there trying to cheer her up and
making her feel better. Dianne and i also got to go and play
9 holes of golf with another couple in the neighborhood the
Dion's. It was fun but weather cut it short so we went to
a local pub for some cocktails and dinner while we both had
babysitters. It was awesome and now we are going to try to
get more couples out so we can play more........yah right. So a year ago we were introduced to the Dickinson family
who's little boy is Jack's age and has NB as well. They were
at Sloan Kettering in NY and i went and saw them and talked
about what we had been through and how to overcome. Dianne
also went to see them another time and we really tried to
help by sharing our experience and advice. Ironically, we
are now calling on them as they are still at Sloan treating
Jeremy. They are now going to be our insight as to what to
expect. Here is some of what she shared with us. "A little about the treatment The 3F8 treatment I call
labor pains for chidren. The first 20 minutes Jeremy is himself
and then he has some pain which is treated with medicine, blow
by oxygen, and warm packs. The pain last for 30-40 minutes
and then Jeremy sleeps it off for a few hours and bounces back
to himself." Scott and Lisa have been a great support
for us. We are going to a neighborhood bbq today and then to our
friends the Powderly's tomorrow and the 4th for pool party
and fireworks. Aidan is going to go on his own adventure
while we are in NYC as he is going to Maine with Nciole
and her family for some summer fun. She has 3 younger sisters
that i am sure will keep Aidan entertained. She has been
a life saver to us and we couldnt do all this without her.
We are going to leave from the Powderlys to drive to NYC
on Tuesday morning and will return on Friday night. Next week will consist of an orientation, tests and scans
and just getting to know the doctors, nurses, facility
and understanding the treatment. As we understand so far
it is 2 weeks of treatment (M-F) and then home for 3 weeks
and repeat this cycle 4-9 times depending on Jack. So we
wil llet you all know what it is going to be when we know
more. Dianne is going to Chicago in a few weeks with some of
the other NB moms and doctors as there is an annual NB
conventions that is attended by other families, doctors,
nurses, etc to talk about the disease, treatments, new
treatments and studies, etc. She is looking forward to
it and i think is going to really enjoy the time away as
she really likes the other mom's and they understand what
we are going through obviously.  On July 7th it is the one year anniversary of the passing
of our friend Colby Dufour who was one of jack's buddies
in the hospital. His family is very important to us and
share a bond that we will never be able to explain to most
people. they have been rocks for us through all of this
and we would like everyone to celebrate Colby's day in
some way. Donate to something special to you in Colby's
name, say a prayer for his family, send us a card that
we can forward to them, donate blood, write his name down
or just think of him and his family. I have put a photo
of the three boys on the website. His life was cut short
but the impact he had on people was priceless. He affected
more peoples lives than most people do in a lifetime. We
will think of him fondly and will honor his memory in our
own way. Our dear friends the Angello's in NY are expecting thier
second baby next week and i find it ironic that Tom was
Jack's pediatrician and our friends when we left NY to
go to Boston and now we will be back in NY near them and
spending time with them and will be welcoming another to
thier family as they did with us as well. We are looking
forward to spending some time with our NY family that we
have missed since moving. Happy 4th of July to everyone and thank you so much for
the support and friendship. The neighborhood food and support
is amazing..........i got in trouble for pointing out any
one famliies cooking......it is all very good. |
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| As we have learned you can’t plan more than an hour at a time in the world
of cancer. After having a great week at home following chemo Jack had to go in
on Friday to get transfusions of red blood and platelets as his counts continued
to drop (its normal). After getting done they sent him home. He got home and
got a fever 2 hours later so we had to take him back in as it is mandatory 48
hours in when he gets a fever of above 101. The other unfortunate thing is once
he is admitted and his immune system is below a certain level he has to stay
until it reached a certain level. Given his past track record we know he will
be in for at least a week and up to 2 weeks. So we went from having a great Fathers Day weekend planned
with a garage sale as well to being back in the hospital.
How quickly things change. I did however get to keep my Fathers
Day golf outing with the guys from the neighborhood. Great
day, good fun and great golf. When I got to the hospital
after Jack had made me Fathers Day cards that were plastered
all over the room. It was very nice. Dianne is being the trooper right now as Jack won't let
her out of here sight so she is trapped with him in the room.
She got out to a movie on Sat and went for a walk today while
I was there. It is wearing on her and we just hope we get
home soon. We are trying to get the doctors to let Jack come home
early and we will give him his IV drugs but I don’t know if they are going to let us. We will
see. We are still looking at having to go to NYC to Sloan Kettering for scans
and evaluation starting on July 5th for the entire week. Jack has a friend next door this time and her name is Leanne.
She is the cutest little girl who is 4 yrs old and is a firecracker.
The last two days she and Jack have played at Jack’s door. Jack is in isolation so he cant leave
the room except at night when there aren’t any kids around so Leanne comes
to the door and they push things under the door to each other. It is very funny
and the whole floor comes to watch as they laugh and fight and argue over the
things they are passing back and forth. It has kept his busy for a few hours………that
is good. Jack woke up this morning late, which was nice for dad.
He also got his counts and his ANC (immune system) is finally
up from 0 to 18. We have to be at 200 to go home but it is
a start. It amazing the little victories that are a big deal
to us but most people wouldn’t understand. The fact that he ate a
banana this morning was huge; he didn’t totally scream and jump around I have taken today off to give Dianne a break. She needs
to go home and spend some time with Aidan as he is feeling
a little neglected I think. He has been acting out his frustrations
and has become extremely jealous of Jack when he is around.
Jack on the other hand doesn’t want Dianne out of his site for
even a second so we have to try to balance the two. Lucky for me but not for Dianne is that it is raining………lot
easier to be in here when it is raining. Dianne just called and Jack heard me
talking to her so I put him on with her now he is having a total meltdown. Not
a good idea……Dianne sounded so happy to be home and Aidan was definitly
happy to have mommy there. I am glad it worked out.....…They opened up
the playroom today at noon for Jack......so he had the run of the place. He road
the tricycle around fast cause no one else was up there. Thank you to the Childlife
people........they are life savers. The cards and pictures everyone has sent have been awesome
as Jack loves getting the mail and he is really into seeing
pictures of the kids that sent them. So if you are going
to send stuff make sure you drop in a picture cause we put
them on the wall for him to look at. Olivia Benvenuto is
the current “Best Card” winner…….. Lastly, thank you to the neighborhood again for all of
the meals and help. It has made a huge difference. I have
to give the current neighborhood “Best
Meal” to the Burkhart’s MN Wild rice and Chicken………amazing
taste of home for me. Thank you everyone we really apprecite it.With any luck
we will be home this weekend........... |
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Jack has done it again!!! He finished his chemo last night and they said he had gotten
through it so well that he could go home today. So they
just got home and he immediately went to the back yard
with Aidan and are playing in the sandbox. And people wonder
why we cant plan anything in our lives. We thought we would
be in for at least another week. He really was such a trooper through this round of chemo
as it was a very strong dose of chemo and we know he felt
like crap but he still had fun, played with the other kids
in there and really made the best of it. He had his meltdowns
like when Mom and dad left to go to the Harbor Walk fundraiser
for the hospital on Sunday morning. The Walk........what an amazing showing by the Lynch friends
and family. Jack's Floating Family was the #2 in fundraising
and still gaining on the #1 spot as people still donate
money to the fundraiser. WE had 35 walkers yesterday who
were troopers out there in the 95 degree weather and at
least that % of humidity. It was the longest 6 miles of
my life. I kept looking for the beer station but all they
had was water and Gatorade. So thank you to all of you
that walked and donated to the cause we really did make
a difference. Yesterday after the race Di and I snuck out for a quick
lunch before going back to the hospital and relieving my
mother who has been here helping us out. When we got back
Jack was asleep so we got a bit of a break and took naps.
Then the soreness of the walk set in and I realized that
I need to start walking more.........wow. Last night following Jack's chemo you would think he would
be in bed tired and sleeping but no he was out in the halls
screaming and playing with his friend Sammy who is 3 yrs
old and in with cancer too. They played in the hall for
over an hour with stuffed animals and just had a blast
together. Earlier Jack was sad because his friend Michael
Garfield got to go home because his counts were up. He
is the best 4 yr old basketball player you will ever see.
He also plays video games like a 12 yr old.........or so
I thought. All this time I see him playing video games
but come to find out he is just making the characters jump
around as he really doesn't know how to play the games.
His Mom told me the news......... Well, we are home and enjoying it. We could go back in
at any minute if he spikes a fever again supporting my
original statement that we cant plan anything these days.
He is going to get a fever as his counts drop from the
chemo so we will be back in the hospital in the next 5
days but just for a few. Then home for 2-3 weeks and to
NYC and Sloan Kettering for scans and evaluation the first
week of July. So until then we are at home and trying to
keep Jack healthy so all sick kids stay away. I am going to update the pictures this week to all of you
that have emailed for new pics. Thank you to my Mom for
coming in and helping us out for 2 weeks as well as a continued
thank you to Nicole for baby-sitting and putting up with
us........to our neighbors who have stepped up big these
last few weeks with food for us. I cant name the best cook
but wow are you ladies really in a heated race. Keep it
up. The Benvenutos do get a mention for not only a great
Italian meal but they included a bottle of wine. Thank you to the school kids that have been sending Jack
cards. We really do look at everyone and I read them to
him. I do have to edit them as some of them are sweet but
a bit to honest in their wishes. We really do love getting
the mail and art, cards, pictures he thinks its the coolest
thing that people send him things. Another thank you has
to go out to the folks at Outthink. They are the agency
that does his website that so many people visit to see
how things are going. Tracy, John and Ralph are just amazing
people who have done an amazing job for us and have donated
their time and creativity to help our family so please
send them an email and thank them for their work. www.outthink.com Check out the upcoming events as we have the Golf Marathon
and the Cycle for Life in the fall that will be fun. |
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| Today the fun begins as Jack is on his way into the hospital
now to see if his counts are high enough to start chemo.
We really hope so as every day that goes by is another day
that the cancer could be spreading. It sucks waiting. We
have been bad at keeping you all updated but hope you understand
that when we are home we savor every minute we can and just
dont want to take time to type. NOTE: Jack's counts are high
enough and he has been admitted for more chemo!!! Sounds
insane to wish for chemo but its a good thing. So we are
in for about 2 weeks starting today....... We have been on somewhat of a rollercoaster in that Jack
has been scheduled to start his second round of chemo twice
already and both times he was sent home because his platelet
count is too low. He has been hanging around 50 which is
too low to start chemo and too high to do a transfusion so
we pack up the car go in and turn around and come back. The last few weeks have been awesome because Jack feels
great. He is slowing down as his counts fade but we have
made sure that everything a kid would want to do we have
done. He has played with all of his buddies and had gone
to the farm, water parks, playgrounds, Children's and Science
Museums and has had a blast. He actually got to swim in a
pool for the first time in his life. He was not allowed before
because of all the bacteria but his counts were high enough
to where the doctors said sure why not. He went to his buddy
Nicholas's house and swam for hours. He screamed when Di
made him get out and he was even taunting Nicholas to get
back in the pool when he got out. I got a surprise last week as well. Every year for 8 years
I have gone to VA to play in a golf tournament called the
DJ Invitational with 19 other guys. This year I was going
to not attend because of Jack and the day before Dianne said
here is your ticket get on the plane and have fun. I went
down did some fishing played a ton of golf and hung out with
some of the best guys around. My scramble team did win the
event and Team USA beat Team VA for the first time in many
years. So it was big fun and I am very lucky to have the
best wife out there........I did miss Jack's pool experience
which was on my mind all day Sat as I played but I will see
it again soon. On Sunday we have the Harbor Walk http://harborwalk.kintera.org (type
in Jack Lynch under sponsor walker) it raises money for the
hospital and specifically for Jack's clinic. We have blown
away our goal and have 33 people joining us in the walk.
We are still $400 short to be in first place and will get
there. Also, tomorrow is National Alex's Lemonade Stand day
so go to www.alexslemonade.com and
click on the "find a stand near you this weekend link".
She was an amazing little girl so please support the cause. On that note, we have to thank everyone for the amazing
generosity that you all have shown whether it was to our
family or one of the fundraisers we have sent around. Please
dont feel obligated to donate every time we send you an email
with another event just know that we appreciate you giving
what you can and that "you
get what you give". The last few weeks have been such a joy. The boys are amazing
together and they are so much fun to watch with their buddies.
Jack has seen and done so much in the last few weeks I
think he thinks that this is the way all kids live. He asked
Di the other day if we could still go to Disney even though
Mickey was sick. He said we could just go and see Minnie
and Goofy.............the kid is smart. |
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| Jack is still in the hospital as
his counts are still not coming back up yet. This was expected but I think we just didn't want
to believe it as we wanted to be home. When he went in for
radiation a week ago today he got a fever (normal with chemo
kids) but once his fever was gone it had zapped his immune
system down to nothing so they are keeping us. He is still
getting radiation twice a day until Wed. With that said, our baby-sitter (Nicole), and now live
in nanny has been staying with Aidan and Dianne and I have
been switching nights in the hospital. I am back to work
during the day. My father came in on Saturday as we thought
we would be home and now he is visiting us in the hospital.
The good side is that it has been raining for 3 weeks so
we haven't missed much. When we do come home (hopefully this week) we will be in
lock down. We start more chemo a week from today and will
be in again for a week or so. As you can tell we cant make
or keep any plans as things change hourly. We hope to see
you all soon and trust me Jack misses his buddies very
much. If you all can send some pictures of the kids that we can
put up in his room it would make him feel good I think.
You can just leave them at the house and we will get them.
We will keep you all in the loop as to when we are home
and what we need. Again you all have been amazing and we
will never be able to thank you. make sure you join
us for the Walk on 6/12 if you can. |
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| It is Friday the 13th so nothing
should surprise us. Jack has gotten another fever (very
common) so we have to stay another 24-48 hrs mandatory. We
have been hours from going home twice this week then got a
fever so you can see why I tell people that we can't plan
anything around cancer. It is one of the hardest things to
come to grips with during cancer treatment is that you can
plan nothing and have to be prepared for everything. On Thursday
we were all ready to go that day and he spiked a fever at
6am and boom we knew we were in until Sat. Then this morning
same thing.....fever at 6am and boom it could be Sunday. Cancer
lives by no schedule or pattern so neither can we. It is supposed
to rain all weekend now so I guess it could be worse. I wanted to share something that I have tried to explain
to people verbally but can't so maybe in email I can. One
of my least favorite things to do is to take jack to his
scans and radiation because you take them into the basement
of the hospital where the nuclear medicine dept is and go
into a room with huge machines and an odd humming noise that
is constant. You lay Jack awake on the table and try to describe
to him what is going on and what is going to happen. Dianne
tells him that they are taking pictures of him while he is
asleep and oddly enough every time he wakes up he says "I want
to take the pictures" not knowing that they are done.
But for me, this is very hard to watch as they lay him down
and give him the anesthesia his eyes roll back in his head
and he goes to sleep. As a parent that knows the challenge
ahead of us it is far too hard for me to watch him on the
bed closing his eyes. Dianne has become far to used to it as she has been with
him for the majority of his procedures and all of his outpatient
radiation treatments which were long days. They arrive at
the hospital at 8am for the first of two treatments that
take about 30 minutes. Then he goes to recovery, wakes up
from anesthesia wait 6 hrs at the hospital/Neely House and
do it again at 3:30 then try to be home for dinner and baths.
The worst part, he can't eat or drink from midnight the night
before until after he wakes up from the second treatment.
Starting Tuesday that will be Dianne and Jack's day for the
next 7 days. We have to stay away from sick kids as Jack's
counts are going to start dropping and we need to be careful
to not expose him to anything that can compromise his immune
system. Hand washing is the key! Here is what our schedule looks like so far. We will go
home for 2-3 weeks for Jack to recover but he will have to
come in daily to do 14 radiation treatments to his legs and
head (2x a day for 7 days, skipping the weekend). We do the
drive in and home because we want him to sleep in his own
bed and have time to play with Aidan not to mention we get
to sleep in our bed and eat regular food. As Jack recovers
from the chemo, his counts will drop and will need regular
infusions of blood and platelets in the clinic. If he recovers
on schedule we will have three weeks at home then back into
Floating for his second round of chemo. All of this chemo
and radiation is preparing him for scans and an evaluation
at Memorial Sloan Kettering in New York at the end of June
to see if Jack eligible for a protocol that they have been
working on there. If he is then it looks like we will be
summering in NYC at the Ronald McDonald House if they will
take us - not quite the Hampton's. You know everyone tells us how amazing Jack is, how strong,
brave, smart, inspiring, etc. but I can tell you he is even
more than that. A very close friend of mine told me the other
day that Jack has brought together so many people across
the country via his story and that he was amazed by this.
I guess I hadn't given it much thought until John said this
and now that I have thought about it and looked at the emails,
letters, website postings, etc it really is true. We are
very lucky to have amazing friends and family that have shared
Jack's story with thousands of people who have in turn shared
with their circles. If he has given one other family hope
and comfort, provided doctors with knowledge to treat others
or have made a workaholic stop and enjoy their kids or made
someone realize that life could be worse or that their situation
isn't so bad then all that Jack is going through has not
been in vain. We are home today and unfortunately got a rainy day. Jack
is feeling good but his mood swings are incredible and frustrating.
His new thing is that he continually says "I don't like
you." I think he is so very frustrated with the whole
thing now that he is starting to figure it out and needs someone
to vent at, of course it would be his Mom and Dad. Its hard
on us as the emotions we feel are so strong that when he says
something like "I don't like you" it can crush you
in a heartbeat. Its hard. And of course on it can also be
funny. The other day in the hospital as Jacks mood got increasingly
nastier, his Child Life Specialist, Carol brought him a Sponge
Bob punching bag (take out a little aggression). Well instead
of punching it, he body slammed it and popped open the base
flooding the floor with water then he went running around
the floor looking for Carol his nurse to help him clean up
the mess. I am going back to work starting Tuesday and Dianne is
starting the radiation marathon. The boys babysitter Nicole
Cyr has moved in with us for the summer to help us deal with
this insane schedule. She is primarily taking care of Aidan
while we are away, but we are fortunate that both of the
boys love her dearly and Aidan can keep up with his friends
at home. We can't thank her enough for her time and help
and a special thanks to her family for letting us keep her
for the summer. She is a welcome part of our family. Grandpa and Grandma Lynch are coming to town next weekend
to spend some time with the boys. It will be fun as Jack
misses them dearly and I know they both have been dying
to come to Boston to see them. We have to thank Kathy and
Tim Maletich as they donated a SW Air ticket to fly them
in. Again people's generosity has been incredible. Also,
Jack's cousin Kira has been in Germany for 4 weeks and
he misses her terribly and is going to call her today in
the hopes that she will come home. They are so cute together. We will try to update the site as quick as we can but things
are going to get even busier. We are listing a few fundraising
events that we are supporting so check out the events page
later this week. We are doing the Harbor Walk on June 12th,
if you want to join our team and walk with us you can sign
up on the link. Thank you again to everyone for your continued
support and friendship. |
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| What a fun week!!!
So our week at home recovering from surgery and preparing
for chemo was amazing. We tried to give Jack and Aidan as
much play time as we could so they got to hang with all of
us buddies in the neighborhood and his friends around town.
On Mother's Day, while the dads watched the kids and played
the Mom's went shopping and to a movie as it rained out their
annual Mothers Day golf outing. Honestly I think they enjoyed
the shopping and the movie more. Jack really had a great time
last week. We also played in the back yard and at the playground every
day. He visited with Debbie his physical therapist. We went
over to his friend Austin's and they played all day long while
Di and I celebrated his fathers 41st bday. Saturday we went
down to our friends the Powderly's to see Jack's best friends
Nicholas and Catie. Jack and Nick are two peas in a pod and
have as much fun as three year olds can possible have. It
rained so we were inside most of the time but on Mothers Day
it cleared enough for Jack to go out and ride Nick's small
battery powered motorcycle around the driveway. It was the
funniest thing you have ever seen with Jack on the bike driving
around helmet and all. He did run Catie over but there were
no major injuries. Kim wanted me to make sure I told people
it was a mini Harley Davidson. He loved it. His friend Kelly Mowtschan came to visit him from Florida
and played for the weekend. Kelly helped us last summer for
a few months when we were in the hospital. She watched Aidan
and would come to the hospital and play with Jack so they
both are very fond of her. We took the kids to the Children's
Museum last week as it was also Jack's friend Cooper's birthday
and he was going to be there celebrating. The boys so enjoyed
hanging out with Kelly and playing in the back yard. Because of Jack's surgery he has to take steroids to prevent
swelling...well...one of the side effects of the steroids
(besides mood swings, which resemble a typical 3 year old
melt down) is that Jack has a ridiculously increased appetite.
This is an understatement as Jack has gained 6 lbs in 2 weeks.
He has been eating hot dogs and popcorn like there is nothing
else available - he can eat up to 5 hot dogs in one sitting.
He has gone up a size and his clothes don't fit and he walks
funny. It is funny but also sad as he told us his "belly
was soooo big". Fortunately, he is only on them for another
week and he will be off them. We checked into our suite at Chateau Floating today (Monday)
and Jack has started his chemo. He is doing some very heavy
doses of chemo to start working on his spot in his leg and
anything else remaining from the surgery. We may also be following
up the chemo with radiation to make sure we are getting everything
we can. We are also potentially looking at a treatment out
of New York at Sloan Kettering Memorial that specializes in
Neuroblastoma and relapse therapy. We will have to make some
tough decisions on Jack's treatment that we didn't have to
make the first time. There are options all over the country
at different hospitals but the sad fact is that they all have
similar successes, none are a cure. So we are in the process
of evaluating all the options, with his doctors and are going
to make the best decision we can for Jack's happiness, health
and our family. We are not only speaking with our doctors,
and other institutions but also talking with other families
that either have been through it or are currently in treatment.
They have been an amazing support and source of information
for us to make sure we are making the right decision. The
fortunate part of the Sloan protocol if we choose this route,
is that we have such great friends there to keep us busy that
we won't ever be alone. Today is the 11th and Jack has now had 3 days of chemo and
although he is starting to feel a little yucky once in a while,
is running right through it. We have been in the playroom
all morning painting, and now he is playing playdoh with Dad.
He crashes once in a while and curls up under his new Incredible's
blanket which he loves......thank you Diane D. Jack has been
testing us while deciding on which DVD to watch he asks us
to read them all off to him. Its like a pitcher shaking off
the catchers pitch selection and drags on for some time and
then ends up with his top 3 anyway, Peter Pan (thanks Val),
Veggie Tales and Monsters Inc. When you are in here you live in this weird state of denial
as you try to make the best of things and stay positive and
try to make the kids feel normal. Last night however we started
to feel it as Jack started to have the bone pain that comes
along with this kind of chemo. He was crying and at the same
time his IV broke and when Dianne leaned him forward there
was blood all over the pillow and shooting out his IV because
he was crying about his leg - it sucked. As much as you try
to not panic to not scare him it is hard running to get the
nurse without looking like something is wrong. I am not good
with blood to begin with and this was scary, Dianne of course
reconnected his line to stop the blood - she doesn't get queasy.
It quickly reeled us back in to reality for a moment and gave
us flashbacks from his transplants last year. I like to end the updates with a funny Jack story. As I
had mentioned previously, the pain in Jacks leg was awful
so they gave him a good dose of morphine to take care of it.
Of course it was my night to sleep in the room with him and
instead of him going to sleep......... he was wired. He was
bouncing off the walls and yelling in the halls laughing so
loud that security came to see what was going on. He was like
my college roommate drunk as he was laughing and being crazy.
The nurses got a big laugh watching him as he sat in this
wagon and I pulled him around the 7th floor with an IV pole
tagging behind. He stayed up until 12:30am watching movies
(peter pan of course). Again, there is no way we can send thank you cards out as
we just don't have the time to do it so please accept our
thanks and know that we really appreciate your support of
our family. A quick thank you to our neighbors for the dinners
last week, they were awesome!! EVENTS:
On June 12th we are going to participate in the Floating Hospital's
Harbor Walk to raise money for the hospital. We encourage
everyone to join us or support us. Our hope is that Jack will
be able to join us if he feels ok. Go to www.harborwalk.kintera.org
to register to walk with us or sponsor us. |
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| We are going home! Jack has done so well that they are sending us home this
morning. They took his bandage off and said we are good to
go. He has been running all over and eating like crazy because
of the steroids he is on. His hotdog breakfast this morning
topped it off. Our friends Mike and Kim came in last night
for dinner in Jack's room and snuck in a little vino for us
and Melissa and Uncle Bob came in the night before to have
Chinese food and a movie with Jack. The Incredible's is a
big hit with Jack as the baby in the movie is named Jack.
It was my turn to stay at the Neely House last night so
Jack and Dianne surprised me by showing up at the room at
8am to tell me we were going home. The only problem is that
while they were there the doctor came to the room to discharge
us and they were gone.......so now we are sitting here waiting
for him to come back. This is painful. The brief update is that we will go home today, come back
in at some point next week to discuss next steps with the
doctors and he will come back next Friday to get the stitches
out. I tried to explain to someone this morning the feeling
of finding out you can go home.............and I cant. It
means we get out of our "suite" here at Chateau
Floating and it means that Jack can go home and see his brother.
Lastly, yesterday the Boston Bruins came in for a hospital
visit and Jack got his picture taken and had some fun with
Blades the mascot. if you pick up today's Boston Herald there
is an article on it. Jack's buddy Bobby is the one in the
picture. I will update everyone early next week as we are taking the
weekend to enjoy being home. Thank you to everyone for your
love and support. A quick shout out to a few friends fighting
the fight......Duke Dawson, Tom Murphy, Allison Hawkes, Diamond
and Jack's buddy Michael Garfield. |
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| Jack’s surgery is a success!!!
They were able to fully remove the tumor, it was fortunately
located near the surface of the membrane so they did not have
to disrupt any of the “good brain” stuff. He awoke
immediately after surgery looking for his juicey, nuk and
then Mom & Dad…in that order. He is remarkable,
eating, drinking, giving orders and already up and walking
and playing in the playroom less then 24 hours after surgery.
Best case scenario, we could be home by Friday or Saturday. So, the cancer roller coaster continues. The last two weeks
have been surreal for us. We went from being a remission family
that was finally getting back to normal to a relapse family
struggling to find answers and solutions to how this could
happen after the success we had. It’s also harder because
we were in for so long, then home leading a somewhat normal
life, then again in a matter of minutes our lives became so
unsure. Recently some of our little friends have also relapsed
and have sadly not survived their cancer our hearts were broken
for the kids and their families. It is incredibly hard to
comprehend that we are now a relapse family and the realization
of years of treatment ahead of us until they find a cure that
will potentially work for Jack is completely overwhelming.
It’s hard being on both sides, when you are a healthy
family you constantly worry about relapse, and when you relapse
can’t help but worry about your other friends out there.
Just as a quick reminder to them, one of our kids will get
it the first time around, we are confident and always praying
that it is our two Madisons’ – stay positive!! As far as our future treatment goes, the relapse therapy
is very different than the first time around. When you relapse
there isn’t a “protocol” or plan of attack
that is set like the first time around. The doctors evaluate
where it is, how much of it there is and decide how to attack
it. The process is going to be more painful and stressful,
since we have no set plan in place for treatment or timeline
- we are in limbo for a long time. To start, as soon as Jack
recovers from surgery he will surely start a full regiment
of chemo to start working on the remaining cells from his
first scans – primarily the leg and anything else left
in his head and body. On the back end, there could be travel
involved to other facilities for experimental treatment, we
are keeping all of our options open to make the right choices
for Jack and our family. Fortunately we know our way around
this place and the people so the learning curve is short and
we are incredibly fortunate to have great support within the
hospital with the other families, nurses, doctors, and staff
– they are a wealth of knowledge and support and we
are greatful for them. Simply put, cancer is a crap shoot
and nothing about it is predictable. As parents, we struggle
with the fact that we have absolutely no control over anything
but keeping him as happy, well adjusted, and comfortable as
we go through this treatment. Staying positive and strong
for Jack and Aidan is really our mission on a daily basis.
He is so smart that he can sense everything and I think deep
down knows what he is up against – so, we have to put
on the best face all the time which is very difficult at times.
Dianne and I are both “planners” and with cancer
you can’t plan anything as things change by the hour.
Prior to the surgery we had to explain to Jack what was going
to happen over the next few days. He is amazing in that if
you tell him what is happening he is ok with it versus surprising
him. He has been watching the Peter Pan movie that his buddy
jack Fay lent him and he loves it. So much that we told him
that his new stitches were happening cause the doctors were
making him better and that he could tell “buddy boy”
(Jack Fay) that Captain Hook made the scar. He thought it
was a great idea. We have to start by again thanking so many people for their
help during this time. Jack’s Auntie Susan who has flown
in from MD to take care of Aidan while we are in the hospital
as well as her husband Mike for lending her to us for so long.
Also to our families as they have sacrificed so much to be
there for us, we cant thank you enough. All Access Sports,
my co-workers, have been amazing since the beginning allowing
me to spend the time with my family and specifically Jack.
They have picked up the slack and done my work and I will
never truly be able to thank them. Pete and Michele again
I will never be able to really thank you and hope that I never
have to repay the favor. To our crazy little Aidan, when you
read this years from now, we miss you with all our hearts
every day we are away from you, but you are in good hands
and loved deeply – Jack told me today he “really,
really loves Aidan.” Always remember that!!! We have also realized this week how many people’s
lives that Jack has touched. The outpouring of support, emails,
mail, website postings and phone calls has been unreal. Hundreds
of people that I don’t even know follow Jack’s
story on his site and when the first update went up it started.
Whether your religious or not prayer and positive thinking
has really helped us beat this thing. I will finish today’s update with a funny Jack story.
While we were in surgical prep there is a tech (Mary) who
we have gotten to know very well wanted to bless Jack before
surgery. The surgical recovery nurse Barbara told Mary to
go over and give him one of her famous blessings. She came
over and started to do the blessing which was very nice and
special but running long at which point Jack looked around
and said “Ok Mary thank you”. She sped up and
finished……….had to be there but it was funny
and broke the ice for us because one of the hardest things
to do is watch Jack go under sedation and shut his eyes. Crushes
us every time. P.S. Another update with pictures soon. Also, for those
of you who attended the AZ Fundraiser we can’t thank
you enough for your support and generousity, but unfortunately,
we want to tell you not to expect any thank you cards like
the other fundraisers as we just can’t focus on anything
but jack’s treatment. So this is a big thank you to
everyone. |
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| We are heartbroken to be writing this update,
we received news last week that Jack’s latest scans
have come back positive with relapsed Neuroblastoma cells.
To make what has been an incredibly long week shorter, it
appears that the primary cells that appeared in his MIBG scan
(tumor cell scan) have appeared in the front quadrant of his
brain. We came into clinic yesterday for CAT scans to determine
the extent of the cells and they tragically found that the
tumor has bleed and has started to cause swelling and pressure
on the brain. We were immediately admitted and are currently
being treated with steroids to decrease swelling and have
been schedule for brain surgery on Tuesday 4/27 to remove
the tumor and surrounding damage. However horrible this may
sound, in order for us to move forward we have to look at
the bright side of the whole situation. As we have always
said, a positive attitude is the most important part of our
survival in the world of pediatric cancer. So, here goes….
we were scheduled to leave on Sunday for our Make A Wish trip
to Disney, we are incredibly lucky that we were able to catch
the tumor prior to our trip otherwise his chances of seizure
were likely and it could have been an even worse scenario
that what we face next week. The area of the brain that the
tumor is located, according to his Neurosurgeons (an army
of 5 so far) is actually the best location for a brain tumor,
sounds crazy doesn’t it. The frontal lobe typically
does not affect any major body function, except for personality
(which may explain his “fresh” attitude lately),
but he currently he has no visibly signs of damage. So far
the additional tests look pretty good (minus the brain tumor).
There are no visible signs of cancer in his bone marrow, or
bones, but they are still trying to check out a spot in his
femur to determine what it is – we are a little anxious,
and will let you know when we do. We have an MRI today that
will give everyone a better picture of the tumor and any activity
in his leg, so please be thinking about us today and send
positive thoughts. So, however optimistic this may be, if our surgeons can
successfully remove the tumor, we are in a little better place
to start his chemo treatment to get him back into remission.
Unfortunately, there is really not a set protocol for his
relapse treatment like he had for his original diagnosis.
Once he recovers from his surgery then his oncology team along
with Ed and I will figure out what the next steps are for
treatment. Which will mainly consist of chemotherapy to blow
out the remaining cells and possible radiation for the brain
area. We honestly don’t know, but at this point we are
up for anything. Jack on the other hand still thinks he is at summer camp.
For those of you that have seen him recently he has been his
best ever. We have had the best few months and he feels great
and has been incredibly active which is why we were so surprised
by the results. He and Aidan have their playgroup on Mondays,
music on Wednesday morning and his gym / playgroup on Thursdays
and visits Miss Debbie at physical therapy twice a week. He
has been having a blast with his buddies Kira, Nicholas, Jack,
Cooper, Austin and his playgroup harem when ever he gets the
chance and is generally giving us a hard time like any normal
healthy 3 year old. Ed brilliantly came up with our Disney
trip out, we told him yesterday that Mickey has a cold and
doesn’t feel well so we will visit him some other time…he
said “okay, can we go play trains now?”. As for
next week, and staying in the hospital, he just goes with
the flow, unfortunately he has lived this life already and
he doesn’t really know anything different so he’s
pretty happy., but misses Aidan desperately. So, what is ahead for the Lynch family, once again our world
will change drastically once the chemo begins, his counts
will drop and his immune systems will start to weaken which
will limit a lot of our interaction, but luckily it is easier
for us to play outside (less germs) so the timing is pretty
good. We will also eventually resume our daily visits to the
clinic and the hospital for treatment and any unexpected infections.
Our priority will be to keep him healthy and happy. Our adorably
crazy Aidan is, as always, in great hands with the help of
my Mom, Sue, his baby sitter Nicole and our neighborhood.
We eventually hope to get into some type of routine, if that
can possibly exists, so that we can all spend as much time
together as possible, but the one man wrecking crew (aidan)
wouldn’t do so well in the clinic, (he is very funny).
What you all can do……….just keep checking
in on our website for updates on his condition and our needs,
as you can imagine, we are not exactly sure what is ahead
of us, but will need the love and support of our friends and
family even more than last time. The immediate request is
for everyone to go give platelets and blood as you would be
shocked at how much we use while in the hospital and they
are LOW here in NE area. Also, please understand that once
Jack starts treatment he will need to be kept away from anyone
that is sick in any way, something as simple as a cold could
be devastating to his immune system. The “Keep Jack
Healthy” sign will be put back up on the door so don’t
take it personally if we decline offers, and make people wash
their hands 20 times while at our house. Just think of it
this way, if you are in doubt, don’t come, or call first.
At the same time, we will let you all know when we are in
“good shape” within his chemo cycle and can entertain
and play, which will hopefully be more often than not. Hang in there with us, we love you all, thank you for your
support and continue to keep Jack in your prayers and thoughts.
Love, Dianne, Ed, Jack & Aidan |
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| Jack celebrated his 3rd birthday
in typical Jack style with 20 kids and parents at the Monkey
Gym where they played, ate cake and destroyed the place. They
had a blast. Jack had to visit the hospital dentist today
to get some scar tissue removed from his mouth that the Accutane
caused and is now as good as new. He feels great and is doing
very well. We are heading to Scottsdale, AZ around Easter to visit
friends and family and to host our 4th Jack Lynch Fund fundraiser.
Our family and friends have organized it and it promises to
be another wonderful success. More details to follow soon. Thanks again to everyone for your continued support as we
continue to fight this terrible disease. We are working with
the hospital, other families and a few charities to continue
to raise monies to help support Jack as well as other families
and the Floating Hospital. |
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| Happy Birthday to Jack!!!
Jack turns 3 years old tomorrow 2/5 and we couldn't be more
thankful that we are not celebrating from a hospital room
like last year. We are lucky that he is even here to see #3.
Unfortunately dad has to go to Super Bowl for work this weekend
and will be away for Jack's birthday so we are going to have
his party on 2/12 at the Monkey gym where he goes during the
week. Dianne has worked with the hospital to come up with a "Wish
List" of items that people should send to us to give
to the hospital instead of presents for Jack. He has been
blanketed with gifts this year and we want to start a tradition
of donating gift to the other kids on their birthdays. You
can send it to the house to Dianne and we can have Jack deliver
it to the hospital. (our address in on the site)
The Wish List:
Craft supplies
XBox games
Videos/DVD's
autographed items to provide for other families fundraiser's
Band-Aid
music cd's
Super Bowl merchandise for kids, families and nurses
World Series merchandise too
NOTE: no stuffed animals as they cant be wiped down and
sterilized.
Jack is really doing great and is an inspiration to not only
his friends and family but all the other families with kids
fighting similar diseases. Thank you again to everyone for
your help, support and friendship........thank you. |
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| The scans are all negative!!! We have finally made it through another very difficult part
of Jack's recovery....the follow up scans. Last week was a
very important week as Jack's 6 month scans took place on
3 different days. It has been very stressful waiting for these
results even as each test came back negative as we knew that
even though one was negative another one could show something.
He had a bone scan, a CAT scan and a nuclear MIBG scan and
all were negative and showed no cancer activity. This is an
amazing thing and Jack continues to motivate us and inspire
us by his wonderful attitude and strength. Dianne too has
been amazing as I have been working a great deal and she has
had to handle most of the scans without me. She has been so
strong and has showed how to handle this in a positive way.
I will follow up with a more detailed update and some new
photos soon. Thank you again for everyone's support as we
need you to make it through this. Its a long way from being
over as we have to get to the 5 year mark but this is a huge
first step. |
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| Happy Holidays and a very Happy New Year.
Two after Thanksgiving Jack took us back into the hospital
for two days when he got a fever of 103. It is mandatory to
go in for a 48-hour stay so they can run tests to make sure
it isn’t anything more serious than a cold. Jack had
the flu and was back on his feet in 24 hours. Mommy of course
had Jack’s room feeling just like home in about 5 minutes
with tons of toys, crafts, pictures and fun stuff to do. She
is amazing. Christmas was amazing as it reminded me again how lucky
we are to be home as a family and to have an amazing extended
family and friends that have helped us get through the last
year and half. The fundraisers, donations, gifts, visits,
advice, understanding and help is something that I can not
describe in words as it has really inspired me to be a better
person and has given me an insight to the goodness in people
and the power of positive thinking, prayer and spiritual energy.
We will never be able to thank everyone except to simply say
thank you. Christmas morning was very funny and brought me back to
my childhood as jack and Aidan came down the stairs with eyes
wide open and ooohing and ahhhing like the 4th of July. Jack
understood the idea of Santa and was amazed that he brought
him they toys he asked for and a few others. Ironically the
boxes were a bigger hit than most of the toys. The rest of our holidays were very busy seeing friends and
family. We ended up doing more entertaining than we expected
and were so tired of cleaning up toys before out next guests
got here. We were busy. New Years Eve was lots of fun but interesting. We went to
Jack’s best friends house for the night because we couldn’t
get a babysitter. He fell off of a toy and bumped his head
and ended up in the emergency room with a concussion. They
made it back to the house by 11pm so just made the ball drop.
We played in the snow for a few hours and had a blast. Today was a big day as we started our 6 months scans. These
scans are very important in that we will know if the cancer
is still in remission or is coming back. Our house has been
rather stressful leading up to today. Jack had his bone scan
today and had a cold so they were going to send him home because
they cant put him under anesthesia because of the cold but
he fell asleep. They were able to do the scans while he slept
so we got one down and 2 more to go. He will have his MIBG
scan on 1/10 and CAT scan on 1/12 then we will know how he
is doing. We are confident that he is doing well. We do have some sad news that one of Jack’s dear friends
Sophie died last week. We found out late, as the clinic didn’t
want to tell us over the holidays. We will miss her very much
as she was an inspiration to us this year and was a very special
little girl. I will post information on how you can remember
her and where to send cards. |
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| So it has been some time since our last update. Again we
have been so very busy trying to be normal again. I have been
on the road for work and Jack, Aidan and Mommy have a full
social calendar. Jack now has playgroup every Monday here
in the neighborhood; he goes to music class at Tiny Tunes
one day a week and goes to the Monkey Gym at least once a
week. He also is going to physical rehab to strengthen his
legs and his stomach muscles. So you can see he is very busy.
Thanksgiving was so very special this year as you can all
imagine. We kept it to immediate family and enjoyed being
together after dealing with life this year. We are very blessed
to have an amazing family who has supported us through this
experience. So the last month has been busy but we had some fun too.
The morning after Thanksgiving Jack and I boarded a plane
for Arizona to surprise my father at his 60th Birthday party.
It was so special and grandpa was very surprised and so very
happy to see Jack. Jack also got to meet many of his cousins
and relatives that he hadn’t met before. It was a very
special experience that we all will cherish for some time.
We really have to thank Dianne for letting her little boy
go away for 4 days. We got to see our very special aunt Helen and uncle Jack
from CA who we don’t get to see as much as we would
like but our time there was very special. We spent some time
with Jack’s godfather Todd while were there and got
to see many cousins that he had never met. Jack had so much
fun with his cousin Calysta who he had never met but felt
very comfortable with the moment they met. They played all
weekend long. Jack was a superstar on the flights and we actually
flew back first class and were spoiled a bit. He got to spend
a great deal of time with Grandpa and Grandma and spent a
night with Nana and Papa John. Also, keep in mind that The Floating Hospital created a
fundraising calendar every year that has photos of all of
the kids that are being treated there. This year yours truly
(Jack) is on the cover and all over the pages inside. He is
quite the ham. If you would like to support the hospital and
would like to buy one of these calendars you can send a check
for $10 to: The Floating Hospital for Children
750 Washington st
Hemoc Clinic 2nd Fl
Boston, MA
Attn: Carol Farwell (cfarwell@tufts-nemc.org) |
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