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Living A Dream! (in a good way this time!)
Posted Aug 26, 2008 7:43am
Since much of our life has
seemed like a bad dream these
past few months, it was nice
to live a GOOD dream for a
change!
What a weekend Tommy had! Thanks to the wonderful generosity of some great, great people in the Yankees organization (Chris Wagenti, Jason Zillo, and Mike Margolis), not to mention Margo Potter from my office who first got us in contact with Ms. Wagenti, Tommy (and the rest of the Belsky Boys) had the chance to meet his (their) idol, Derek Jeter! So, this is how it all went down: We knew that our good friends from Maryland (Mark, Lexie, and Laura Owens) had gotten Tommy front row seats for the Yankees - Orioles game on Sunday right by third base (and right by Derek Jeter), but we weren't sure Tommy would be out of the hospital in time to go. Once we learned Tommy would be out in time, I e-mailed Chris Wagenti, the angel who works at the Yankees head office in Tampa, and who has been a huge promoter of Tommy down there. I selfishly asked if she knew of any way we could get Mr. Jeter to give Tommy a hi-5 or something during batting practice before the game, and she said she'd see what she could do. Well, on Saturday afternoon during Tommy's birthday party (which was great in itself and I'll describe in another e-mail), I received a phone call from Mike Margolis, manager of media relations for the Yanks, who tells me we'll have some passes waiting for us at the game Sunday. . . and that's when the party REALLY began! The rest of the day was spent in anticipation, and Sunday morning, Tommy had his first road trip with the Belsky Boys (Dad, Uncle Scott, and Pop-Pop). I'll spare you the stories of the bad habits we taught him on the trip down, but we rolled into Baltimore at 11:00, contacted Mike, and got our passes (Mike was even able to get a last minute pass for Pop-Pop - what a great guy!). Next, we're being led out the tunnel onto the field behind home plate. The rest of the time was a blur of awe and excitement, but I will try to explain it as best I can. Although there was no batting practice that day, players started filing by us doing pre-game warm-ups. First, we met Yankees announcers Michael Kay and Kim Jones. Then, at one point, Yankees pitcher Edwar Ramirez started an impromptu game of catch with Tommy. The look on Tommy's face was priceless. Then, Jason Zillo, the director of media relations, came over, introduced himself, and invited us to sit in the Yankees dugout - are you kidding me? So, there we were, hanging out just like the big leaguers, watching players come and go from the clubhouse, getting autographs from the likes of Joe Girardi, Jose Molina, and others (thanks to Mr. Zillo who helped guide the players in our direction). Then, suddenly, "THE MAN" comes out of the clubhouse. Tommy immediately stands up and his eyes practically popped out of his head. Unfortunately, all of us (even the lawyer) were speechless, but Mr. Jeter was a true class act! He signed autographs, posed for pictures, and chatted with Tommy a little bit. Then he was off to warm-up in the batting cage. It was an unbelievable moment. Check out the pictures in the photo gallery. After Mr. Jeter left, Tommy turns to me and asks, "Dad, was I dreaming or did this really happen?" Then, for the next ½ hour he would periodically turn to me, grab my hand and say, "Dad, I love you!" From a parent's stand point, being able to make your son feel like that, especially given the circumstances over the past few months and all the bad things we've had to make Tommy endure, was truly a redemptive moment, indescribably satisfying, and something I will ALWAYS keep with me. And, we owe it all to Chris, Jason, Mike, Margo, and the Owens's. Thanks to all of you for making this weekend a dream come true for Tommy . . . and his Dad . . . An Unexpected Discharge
Posted Aug 20, 2008 11:08pm
Things are always changing
on the onco floor and they
changed in our favor this
afternoon. As we posted
earlier, Tommy's ANC dipped
a bit today which was a
little bit of a blow to our
spirits. I so desperately
wanted to get Tommy home in
time for his birthday and he
was getting more and more
crazy with cabin fever and
emotionally very edgy. It
has also been a difficult
few weeks on the onco floor
as well as many families
have had sad news. It has
been a test in fortitude
this time around being that
we are on month 5 of this
journey and lifestyle. So as
I was walking along the
hall, calling on our special
angel Avery to help us
through and provide us with
a little extra ANC, I saw a
bright shiny penny in the
middle of the floor. "See a
penny, pick it up and all
day long you'll have good
luck" I declared out loud.
About a half hour later the
charge nurse comes to our
room to tell us that we need
to change rooms b/c our room
is needed for a radiation
patient (we had been
occupying a special, lead
lined room which is used for
patients receiving a
particular type of radiation
treatment). It's not an easy
task to just change rooms
after you have been living
in it for a month and to do
it for what I hoped would be
only another day or two was
a real bummer. It's like
moving out of a dorm. I
joked w/ her and said we
would move out in exchange
for discharge papers. Our
doc was actually present in
the room (which was odd as
well b/c it was much later
in the day than when she
typically sees us) and I saw
the thought flicker in her
eyes. There was a dramatic
pause.... I was silently
hopeful..... Holding my
breath....would she say yes?
I saw her review Tommy's
numbers posted on the chart
on the wall. " OK, I'll let
you go home, conditionally,
of course" WHAWHOOOOO!!!!!!!
Tommy just couldn't contain
himself. He danced all over
the room and immediately
grabbed his "toy" suitcase
and started packing up!!! We
actually got out of there in
record time b/c they needed
the room. We are under very
strict rules until his
numbers are at the
exceptable level. NO
visitors, NO public places
including the grocery store,
mall, icecream shop etc..,
return to the clinic
tomorrow and Fri and until
the ANC is up. We are OK
with all of it. It is a very
welcome relief!!! Thank you,
thank you , thank you. So it
is from my kitchen table
that I write this as my
family is snuggled up in
their beds. It feels so
good. I am so grateful to
have Tommy home, here with
us. Coming from the onco
floor makes you frightfully
aware of just how precious
our children are.
God
bless all.
July 25,
2008 at 10:11 PM EDT
A Quiet Night. I am having an unusually quiet, Benadryl and fever induced night tonight. Tommy had a little bit of a rough day today. As we mentioned earlier this round has intense doses of chemo and it has caused Tommy to feel nauseous and suffer some vomiting. But the nurses were able to add yet another med to the cocktail to alleviate his symptoms. He is now on three different meds for this with yet another rescue med waiting in the wings. Because of this Tommy was not his typical self running and jumping down the halls or entertaining with his guitar so he created a stir of concern among his "fans". Yet he was able to soak up all the sympathy in good form. :-) The eye drops continue to bother him but instead of it taking an hour to get 4 eye drops in it only takes 20 min. Go Tommy! We will see how it goes when I have to wake him at midnight. Initially he was so scared to take the eye drops he asked for a "bravery hug" from me. He hugged and held me so tight and close that I felt as though i could literally transfer my "bravery" to him. So before each drop we do a series of bravery hugs. Now I think I am beginning to enjoy them more than he needs them. :-) He ran a low grade fever last night but he was able to beat it before he was required to start antibiotics. However this afternoon he spiked a high fever which meant he had to start broad spectrum antibiotics as per protocol. Unfortunately the one (he actually gets 2)gives him red man's syndrome ( an allergic reaction) so he then needs to be pre-medicated with IV Benadryl. Lights out for Tommy! So I have now lost count of the number of meds coursing through his blood (not including chemo)! I shouldn't be complaining though. Tommy has been blessed with tolerating everything very well compared to how it can be and is for many other little ones here. To be here and look around at the brave little faces of infants, babies, toddlers, children, pre-teens, teens and all the parents is a humbling experience everyday. CHOP administers intense doses of HOPE, LOVE, and STRENGTH prn (or "as needed"). Thank you for all your prayers, messages, and acts of kindness. It's all working! Staying Strong, Team Tommy
July 24, 2008 at 09:43 AM EDT
Round 3 . . . INTENSIFICATION! After a GREAT week at home, we're back at Chateau CHOP for round 3. Its sort of a reunion since we get to see all our "Onco" friends we haven't seen for a while and catch up on how everyone is doing. (There's too many to name, but please keep all the "Onco" kids in your prayers). Because of overcrowding, our accommodations are not as nice this time around. We're in a VERY small (you can call it cozy) room, w/o any of the amenities we became used to here. CHOP really spoiled us the first 2 rounds, so I guess we can "rough" it this round, especially since "roughing" it at CHOP is still much, much better than any other hospital we've seen! The doctors call this round "Intensification" b/c Tommy's doses of chemo get increased pretty significantly! The good news is that Tommy only gets 5 days of chemo this round . . . the bad news is that he gets about 3 weeks worth of chemo during those 5 days! So, we're buckling up in anticipation of a bumpy ride. Also, b/c of the amount he's receiving, Tommy needs to take steroid eye drops every 6 hours for the next 6 days to prevent some potential eye troubles. Aside from not liking the feeling of drops going in his eyes, though, Tommy's had no troubles so far. In other medical news, Tommy's second bone marrow test, which he had on Monday, showed the same results as the first . . . no sign of any leukemia whatsoever! So for those of you keeping score at home, its now Tommy 2 - Leukemia 0! Also, we found out that Tommy's little brother, Matt, is not a bone marrow match, but that is not too much of a worry right now, since Tommy is not slated for a bone marrow transplant b/c he's been responding so well to the chemo alone. A transplant will only become a concern if Tommy has a relapse down the road... Thanks to some generous donation of gift cards (again too many kind people to mention), Tommy had a pretty exciting week away from CHOP. He took his first Amtrak train ride down to Baltimore to see some old friends, and went to his first major league baseball game at Camden Yards to see the Orioles beat the Detroit Tigers. Tommy also made it on TV (yet again) when a home run ball landed a few seats away from us. Tommy also managed, in less than 3 innings (and with the help of his friend Lexie), to down 2 jumbo pretzels, 2 HUGE tubs of cotton candy, a hot dog, and a coke! (apparently the folks at Camden Yards sell their cotton candy in tubs so when the kids throw up, the parents have something handy)! Tommy also got a chance to see his Uncle Scott play in his softball league's championship game, and to everyone's surprise Tommy received the game ball. It was a very touching moment as both teams gathered around home plate after the game, called Tommy up front, gave him the ball, reminded all us adults of what is really important in life, and then had Tommy take a "victory" lap giving everyone high fives as the crowd gave a standing ovation. There was not a dry eye in the park, and the look on Tommy's face was unforgettable! It was a combination of appreciation and shyness, but also an awareness and pride that he is doing something truly remarkable (fighting leukemia), and doing it in a way that is inspiring to all! Well, that's all for now. We'll keep updating our progress as we move through Round 3, and as always, Thanks to every single part of TEAM TOMMY!!! Peace & Love,
July 14, 2008 at
12:58 PM EDT
Big News! Big, big news!!!!! The "numbers" are in and we are going home for a break! Tommy will be home for a week then return to oncology clinic for a check of his "numbers". According to how they are will determine if we start the next round or get an additional week at home. Due to the intensity of the chemo in round three, his bone marrow needs to recover to a greater extent than the last time. This is probably the one time I will say that i don't want Tommy to recover so quickly. HaHa! We are very excited and looking forward to experiencing some typical home life and enjoying a little summer. The only drawback for Tommy is that he can not participate in any water activities b/c of his brachiovac. But there are plenty of other things to do besides that! We will probably be sitting here all day waiting for the paperwork to go through so we can bust this joint! We will still have our thoughts and prayers on all of our friends here at CHOP. Especially Avery who is putting up a strong fight in PICU. I will miss her and her Mom, Stacey. It's actually a little difficult to leave when you look upon your friends still here. I can not wait until the day when we are together in a typical social setting. One big party! Check in later to read Tommy's "interview" of his summary of Round II. I can't post it now b/c I am being beckoned to put Star Wars Legos together. :-) Staying Strong, Jo
July 04,
2008 at 07:19 PM EDT
HAPPY 4th of JULY!!!!
June 26, 2008 at 11:12
AM EDT
Greetings From the Inside
Initially, "re-entry" was difficult for Tommy emotionally. He was wrestling with feelings of anger, frustration, and grief which presented as loud, physical, combative behavior. (That is putting it politely.) For a parent, it was heartbreaking and scary. Tommy knows what he is "in" for this time and I think that makes it harder to face. But CHOP does it right here and has wonderful nurses and a fantastic child life program to distract kids from the challenges they face. They are also our friends while we are here and they truly adore him. On Mon. 6/23 they had a fun festival called Michael's Way (a foundation set up by a family that has been through this) that had face painting, guitar playing, magicians, clowns, cookie decorating.......and more. Tommy had a blast (and was luckily able to participate because his ANC had not dropped yet). Our friend and co-patient, Avery, who we met during our last admission, was also here that day which cheered Tommy up. (see the face painting pics- that's Tommy and Avery) We also had a GREAT visit from Mrs. Smith and the DiNardo gang. Tommy and Mariano were wrestling within 2 minutes of him walking into the room. Yes, Tommy is feeling very well! and up to all the typical boy activities which is proven by the collection of bruises all over Tommy's head and body! (He bruises very easily because of low platelets) The kids also tore up the hospital by pulling each other in a wagon around the hospital! And I promised I would not tell who else he pulled around in the wagon. HaHa! Beside hospital activities and visitors, Tommy found another way to channel his emotions ( he never ceases to amaze me). He wrote a couple of songs related to his hospital experience. The first is about his IV pole and another about having to deal with Mom and Dad leaving and returning to the hospital. When he first played his guitar and sang for me, I had to use all my self control not to burst into tears! How amazing he is! Singing away his blues! He first shared his tunes with Avery and then went public and began singing the blues in the hall for staff and passersby. All of whom fell in love with him. Avery's mom suggested that he put out a hat and play for tips. He found a great spot in front of the elevators and collected $18 dollars! He spent his loot on a gift for Avery and himself. He is just too much! I will post his songs later. Carepage is going to kick me off because of time limit. More to come later. Staying Strong, Team Tommy
June 18, 2008 at 11:02 AM EDT
Tommy's Miracle WhhhaaaaWhhhooooooo!!!!!!!!!!!!!!!!! I can not find words to express how I feel or express the immense gratitude I feel. I feel like we have received nothing less than a miracle. We could not have received any better news than what we did. Complete REMISSION! Clean bone marrow! When the doc gave us the news, I heard the words but could not immediately comprehend the meaning. There was a definite processing delay. But once it processed I had a flood of tears!!!!Great, big wonderful tears!!!!! Tommy did it! He beat the odds and won the first battle! As I began to make phone calls to spread the joy and tell the nurses our GREAT news it finally began to realy sink in. I realized that I was actually breathing easier and I felt physically lighter. The vice gripping my lungs and the boulders on my shoulders have been lightened. I am so GRATEFUL!!!! Thanks be to God. Thank you to all of you for your love, support, and prayers. With much gratitude, Jo
June
17, 2008 at 10:17 PM EDT
COMPLETE REMISSION! Sorry it took us so long to get this information out, but 1) we just got the news this afternoon; and 2) we wanted to make sure this was not some twisted oncologist practical joke (apparently, though, unlike on the show Scrubs, pediatric oncologists don't do that kind of thing). I was so excited and so full of energy that I went for a run through our town when I got home, and felt like Jimmy Stewart in "It's a Wonderful Life." But, instead of telling everyone and everything "Merry Christmas" like in the movie, it was "complete remission, movie house!" "complete remission, Mr. Potter!" So, here was the scene. Tommy had his bone marrow test yesterday at 10:30 a.m., and since that time we had been sitting around on pins and needles waiting for the results (no alcohol allowed in the hospital -crazy rule!) Then, at approximately 2:00 p.m. this afternoon, the attending oncologist walks into our room with this smile on her face and says very simply that Tommy's bone marrow came back "perfect." No sign of any leukemia cells. Which is no small feat, because 1) a sizeable number of kids with AML do not go into remission after the first round, 2) remission is even more unlikely given the rare form of AML that Tommy has; and 3) it is extremely rare to have no leukemic cells whatsoever . . . none . . . nada . . . zippo . . . zilch (apparently, you can have up to 5% leukemic cells and still be considered in remission - who knew?) So, what does all this mean? Well, while this is a huge accomplishment, the battle is far from over. The type of leukemia we're dealing with tends to be persistent, and almost certainly would come back if treatment ended at this point. So, under the standard protocol, Tommy will have another round of "induction" therapy, which is basically identical to the last round (so, yes, another 4-6 weeks in the hospital watching blood counts drop, praying he doesn't get an infection, and watching the counts come back up). Then, if this round goes similar to the first round, we'll move into three rounds of "consolidation" therapy, each of which would be another 4-6 weeks at Hotel CHOP, but involves different chemo drugs. If anything goes awry during these periods, we'd then look into doing a bone marrow or stem cell transplant. So, we're far from done, but after one inning of play it's Tommy 1 - leukemia 0!!!! Also, attaining remission this quickly, along with with a normal white blood count at diagnosis (which Tommy also had), are the two biggest prognostic indicators of a cure in AML cases. So, at some point over the next few days, we're hoping everyone can take a moment to share a few toasts. First, to Tommy, who is an incredible fighter with amazingly strong spirit and determination! The second toast is to each of you who read this page and send us messages of hope and support, care packages, gift cards, etc. The toast is for your unyielding passion, compassion, faith, love, support, friendship, loyalty, and strength. It's not easy giving this day in and day out, and each of you truly deserve recognition! So, HERE HERE! Let's keep the good vibes going, and get ready for one heck of a block party when this is all done! Keep the Faith, Team Tommy P.S. - the shore was great!!!
June
07, 2008 at 11:37 AM EDT
Well . . . picking up on the theme from yesterday's update . . . something good did come this way! Tommy's ANC went up again this morning . . . so . . . that means we're going home today!!!!! And, even better . . . it looks like we don't need to come back until the 16th. A whole week at home . . . what are we going to do with all the free time . . . So, the next time you hear from us, we'll be updating you from our backyard . . . or, front porch . . . or, family room . . .or, where ever, but at least we'll be HOME! Man, that word never sounded so good! As always, thanks to everyone for your prayers, well wishes, concern, jokes, care packages and love. We would've never gotten to this point without all of it!!! Peace and Love, Team Tommy
June 06,
2008 at 08:16 AM EDT
Just as with life, Tommy's ANC is up today . . . way UP - 253! Let's hope this is the start of something good. Speaking of something good . . . I (Tommy's Dad) have a new theme song . . . Jakob Dylan's new song "Something Good This Way Comes." To me, it speaks to the simple pleasures in life . . . You know, the things we either take for granted everyday, or completely fail to even recognize because we're so busy rushing from one unnecessary appointment to another. When you wake up day after day with you son in a hospital bed, you learn to appreciate the simple fact that the sun comes up and gives you one more day with someone you love, or that a complete stranger smiles and says "good morning" when passing by, or that the family dog, while causing trouble most days, has unwavering loyalty and gives you unconditional love. So, if you get a chance, take a listen to the song, and hopefully when you hear it, you'll think of Tommy, and all the little things we overlook in life but for which we should be grateful! Peace and Love, Team Tommy Diclaimer: I get no monetary consideration for my shameless plug of Mr. Dylan's new song... :-)
June 02, 2008
at 01:26 PM EDT
More good news!!!!!!!!! Tommy's ANC went up to 171!!!! The doc thinks we might be able go home either Thur or Fri for a few days! Tommy is more than ready for a break! We all are. I can not wait to see our family together in our home. I can not wait to sit at the dinner table together, to tell Matty and Tommy to "stop fighting w/ your brother!", to see Tommy squint in the sunshine, to see Tommy run across the lawn, to buckle the boys in their car booster seats in my minivan, to tuck the boys in at night in their room in their own beds........The list of the most mundane, ordinary things goes on and on but now seem so sweet. I asked Tommy what he would like to do when he went home and he gave me the following list ( he obviously inherited his father's adventurous character): 1. Go to Disney World 2. Go to Pop-pop's beach house 3. Go to Oma's house 4. Go to Yankee game 5. See his classmates at school ( but not do school work) 6. Play baseball Hopefully we can refine the list in the next day or so. HaHa! :) Full of Gratitude, Love and Hope, Jo
May 31, 2008 at
10:07 AM EDT
SOME GOOD NEWS! Today, Tommy's ANC (absolute neutrophil count) went up for the first time since he started his chemo!!! ANC is the blood number the doctors look at to determine when he can go home. Now, it only went up to a level 14 (normal is above 2000). But, the word is that once the ANC starts, it usually jumps as much as 500 points a day. Plus, in order to go home, Tommy only needs: 1) to get above 500, and 2) show consistent increase in ANC. SO, long story short, there's a good chance Tommy might be able to go home in the next few days (keep those fingers crossed!)
May 29, 2008 at
11:19 AM EDT
Hi All! Sorry we haven't updated in while, but things have been pretty boring around here (which is really what you want). Tommy finished his first round of chemo on May 9, and as intended and expected, it basically knocked out his entire white and red blood cells and platelets. The plan is then for the cells to come back on their own, which usually takes 3-5 weeks. However, b/c he has no white blood cells, he can't fight off infections, which is why he has to stay in the hospital during this time. Despite his low blood counts, though, Tommy's energy and strength consistently remains high, and he is in great spirits (aside from temporary bouts with acute cabin fever!) In fact, the doctors are incredibly impressed with his strength, which bodes well. As to where we go from here, once his blood counts hit a certain level he can go home for a few days b/f starting Round 2 of chemo, which is basically identical to the first round. Ironically, the better (faster) his blood count start to recover, the less time he'll have at home, b/c they want to start the next round as soon as he gets to a certain level (so, the widow of time between when he's safe enough to go home w/o the risk of infection and when he can start round 2 depends on how fast his numbers are recovering) Got all that? The next big step, though, is his bone marrow test, which he'll have before he leaves to go home. This will tell us how well the leukemia responded to the chemo. Ideally, we'd like to see no leukemia cells present, but its not uncommon for there to be some that survived the first round of chemo (which is why they want to start round 2 as fast as possible). And, in some cases the leukemia can actually be resistant to the chemo. So, depending on how the leukemia reacted will determine whether Tommy will be classified as low risk, medium risk, or high risk. If he's low risk, he'll just continue on a chemo regimen. If he's medium or high risk, the doctors will want to do a bone marrow transplant, with his little brother Matt being the most likely candidate. (siblings have the greatest chance (1 in 4) of being a perfect match). If Matt's not a match, then its out to the general public to find one. So, as you can tell, the next few weeks will be very nerve-wrecking. Please say some extra prayers and cross extra fingers (and toes even) that the news is good... One funny thing, CHOP runs a telethon every year to benefit Alex's Lemonade Stand, a non-profit organization aimed at curing childhood cancers. Well, the entire staff here votes for one patient to be interviewed as part of the telethon and (please, ignore the parent bragging) Tommy received the overwhelming number of votes. So, Tommy was interviewed by the local ABC station here in Philly, and it will air during the telethon. We also will get a copy of it, so we can send it to whoever wants one. Finally, there have been reports of fist fights breaking out among the nurses because they all want to be Tommy's nurse. He has certainly wooed/ charmed everyone here. So, the combination of the Irish charm and German genes are serving him very well! Thanks again for all the well wishes and efforts of support. Although we will never be able to express to all of you just how much you all mean to us, please know we sincerely appreciate ALL you efforts and concern. It really buoys our spirits as we continue our fight. Keep the messages and well wishes coming.... Peace and Love, Team Tommy
May 12,
2008 at 03:05 PM EDT
Happy Mother's Day (belated)! I split the day between Tommy( at the hospital) and Matt (at home). My time with each of them felt very precious. I wish I could clone myself so I wouldn't have to feel split in two. The Tommy update: He is still in good spirits with a little bit of cabin fever. Last Fri(5/9/08) he finished his 10 consecutive days of chemo. He tolerated it very well and the nausea was well controlled with a "coctail". His blood numbers dropped down and his white blood cell count went to 0- as desired. Now is when he is most vulnerable to infection from his own body and from others. So now we wait for the bone marrow to regenerate and his blood counts to come back up. This should take a couple of weeks. The good news for Tommy is that he is now considered "healthy" so his IV fluids were discontinued and he doesn't have to be connected to "Buzz" the IV pole 24/7, only for meds. Yeah. Anybody walking by his room would think he is in here for spring training the way he is throwing the ball around. With all the practice, even I am becoming quite a good catcher. HaHa! Staying Strong, Jo
May 07, 2008 at 02:38 PM
EDT
As you can read, Tommy's spirits are good. He is teasing the heck out of me and his nurse Lyndsy (one of my favorites :)). He is being a very good patient. He is diligent about washing his hands, doesn't fuss too much about mouth care, and really hasn't complained about having to stay in his room. I am gettting a crash course in how to play Star Wars, sort and name baseball cards/ teams/ players. Can anyone say arts & crafts? We did get news that as of tommorrow he will be able to attend "school" in the study room. He continues to be amazed and touched by all the messages. It brings me many smiles as well. Much love. God bless. "Team Tommy"
May 03, 2008 at 01:09 PM EDT
Greetings "from the inside!" Tommy just wanted to say hi to everyone and let you all know how much he appreciates ALL the messages of love and support. He loves seeing who is writing him, and is amazed how many people from all over the Country know him :-) Things are going very well here (knock on wood). Looking at Tommy, you'd never know he was sick, or is in his 5th day of multiple Chemo treatments. We've spent the last few days playing catch (Dad thinks the Chemo has added a few MPHs to his fastball), playing HORSE, and playing Star Wars. His appetite is just as strong as ever, and his energy level is incredible . . . Plus, no nausea (other than a small bout right when the treatments started). The nurses say that he honestly is an incredibly strong kid physically, mentally, and spiritually (Plus, they all think he's soooo cute!) Dad will never again knock those strong German genes from his Mom's side of the family . . . Those genes, combined with his Irish charm and faith, will do him well!!!!! We really feel we are in good hands here at CHOP (this place is the major leagues - its not considered one of the best children's cancer hospitals in the world for nothing). And, the love and support everyone has shown has been such a source of strength and encouragement as we continue our battle . . . Keep it coming! And be sure to keep checking back for updates and pictures. Love and Peace to All, "Team Tommy" Tommy, Matt, Jo, and Tom
May 01, 2008 at 09:20 PM
EDT
Hi Everyone! Thank you so much for all of your caring messages and thoughtful prayers. We feel bolstered and uplifted by everything that is being done to support us in this fight. I can not thank everyone enough. Tommy is doing amazingly well!!!!!!!!!! His spirit and will are amazing. I can not keep track of all the moments that he has inspired me. He has a good understanding of his illness and knows that he has what it takes to get through it. We have named us "Team Tommy", our motto is "Go Tommy", and our three rules are 1) DETERMINATION 2) Everybody loves you 3) Follow the rules of the doctors and nurses. We have immense faith and we lean on it daily. It is a long road but we will make it. God bless everyone. Goodnight. Love, Jo
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