Scans Results Plus...

Overall, William's scans came back with good results. His MIBG (neuroblastoma specific scan) came back negative for cancer, the bone scan came back with a hairline fracture in his upper left pelvic bone area (probably happened at the same time he broke his leg) -- already showing healing, bone marrow came back clean but the CT scan was complicated. It is not 100% clean and probably never will be. There were some smears in the left abdomen area (this place was noted a couple of other times and is thought to be scar tissue from his surgery), a small place in his chest took up the isotope but is thought to be residual in the central line (will do a cross section look with next scan in 3 months), and finally there was a 7 mm smear in the left lobe of his liver. Talking with two of his oncologists, the liver spot is most likely nothing but we will take another look at it in six weeks via an ultrasound.

As a family, we feel plagued with some nasty virus that has turned severe for all of my boys. We have all had a cough with runny nose and congestion. Aaron's 'cold' turned into an upper-respiratory infection and has taken two rounds of anti-biotics to kick. Reilly has been fighting with the same 'cold' for many weeks and has gone through 3 rounds of anti-biotics and breathing treatments to eventually kick a stubborn ear infection. Now William is on his 3rd round of anti-biotics and 4th visit to the doctor/ER to hopefully kill a 'cold,' now ear infection.

We are hoping and praying to all be healthy in a week!

More to come...Angela

Too Much To Say...

I was thinking a couple of days ago that I haven't updated the blog in a month...well, now that I pull up the blog and take a look at the last post, it has actually been two months. Whoa!

So much has happened in the last 2 months and it is hard to get it all in writing:
-William got his cast off, after 5 weeks
-He had a brace on the same leg for 4 weeks, full time, and now only wears it at daycare for another couple of weeks
-Reilly had eye surgery and seems to be doing much better
-Attended the NB Walk and there was a HUGE turn out (still hard to see pictures of the angels)
-Aaron went back to work April 5th and both boys have been in daycare since then as well
-Reilly just had his 15 month wellness check (height: 32" and weight: 26.8 lbs.)

It is amazing to look back and think it has been 15 months already. I can still remember many things like they were yesterday.

Aaron completely finished his bachelors degree (the piece of paper is in the mail) and will start a masters degree at the end of May. I am so proud of him and I know he will enjoy being back in school. I really think he ought to go into teaching; he loves learning and trains his peers at work. Must be in the Fallon genes! :)

Next week Reilly goes back for a check up with the eye doctor to make sure he is still progressing well and William has a week of post-treatment scans. That's right, William is COMPLETELY done with treatment! We have an appointment with his oncologist to discuss remission and signs of relapse, which we are not looking forward to discussing or even thinking about. But we look forward to clean results (praying faithfully) from all scans.

I think we are planning to have a remission party the weekend of my birthday (July 4th). More to come....

Thanks for continuing to support our family in prayer and thought.

Love, Angela

Walk for a Cure -- Coming Soon!

It is that time again...the 3rd annual Neuroblastoma Walk for a Cure is planned for April 3rd 2010. Our family is planning to be there; I hope you all can join us. If you can't make it to the walk but would still like to make a donation to benefit neuroblastoma research, you can do that as well. You can find more information about the walk and flat donations at www.nbwalk.org.

Love, The Fallon Family

All Done!

William came home Friday night, from his last round of antibody therapy. This was the first time that his discharge paperwork did NOT say, "social isolation." Praise God!!! We decided to have a small celebration Saturday night to 1) celebrate completion of cancer treatments -- with the exception of two more rounds of oral Accutane which will be taken at home-- and 2) to have a re-do of Reilly's 1st birthday since he had strep throat on his actual birthday and was quarantined from everyone else.

Here are pictures from the event:

What's Next?!?

William came home from the hospital, on Thursday a week ago, and it seemed to be an uneventful week...FINALY! Just kidding...Thursday night, William was back in the ER with a broken leg. That's right, I said a broken leg. He was playing in the living room and fell just right (or wrong) and has a spiral fracture in his right femur. He now has a 'half-body' cast, from his toes to his hip, covering his right leg, and partially covering his left thigh, with a stabilizing bar connecting the two. Here is a picture of our little guy, with his new blue accessory:


We are not sure yet how this new development will affect whether or not William will recieve the final round of antibodies. Of course we would like for him to benefit from as much treatment possible, to kill the cancer; but we are also aware of the fact that he tends to swell (retain water) with the antibody treatment. He will not be able to swell with a cast covering over a quarter of his body. We are asking everyone to pray for the doctors to find a way for William to finish the treatment (giving him the best chance of survival) without compromising his current health.

Reilly is doing much better with his glasses. He still doesn't like them but will tolerate them for longer periods now. I took him to his 12 month wellness check, last Friday, and he weighs 26# 12 oz and stands 31 inches tall. I think he is going to be one big dude! He still isn't walking completely unassisted but is getting there. I think he has more teeth coming in too since he is drooling buckets. Here are a couple of pictures from his birthday:

Three Week Update

Well, no news isn't always good news but here is the latest and greatest...

3 weeks ago, William spent two consecutive days in the ER, with fever, and eventually was admitted with an infection, in his central line. And, to top it all off, Reilly got ahold of some strep, the day before his first birthday. Reilly, part of my Houston family, and I spent his b-day quarantined to the house with chocolate cake and presents! I will post pictures later in a separate post.

Will's infection was cleared up in a few days and he then began his 4th round of immuno-therapy/antibody treatment, on schedule (two weeks in the hospital). During the last two days of the second week, everything was sailing along until his upper-lip swelled up 3-4 times larger than his bottom lip. VERY SCARY! He ended up in PICU for 24 hours, under strict surveillance, to finish up the therapy. Thank God it is finally over.

Now he has three weeks off (well still on Accutane, at home), followed by one final week of antibody therapy. Then he is done...did I say that clear enough?!? He will be done. Done Done. It is hard to believe. All of the prayers have paid off! Thank you all for contributing!

Love, Angela

Sweet Boys

Well, Reilly took an unassisted step on Tuesday night and last night he was clapping when we say, "yay!" I just laughed and cried (still need to get it on camera). He is so sweet...they both are! William came home from the hospital last night but is still on antibiotics. He was cuddling with me in bed this morning, put his arm on top of mine and tucked his little hand under the sleeve of my t-shirt...(sigh)...it is good to be a mommy! I'm really excited about things going on at work right now but nothing beats the joy that kids can bring. It is the simple little things that make me thank God for the sweet little boys he gave me. They are amazing...that's all I can say.

As promised...Intellectual Baby Pics

William got to tour the CareFlight helicopters (his FAVORITE thing), the night before he was released from Cook:

Pictures Plus

Here are a few of the pictures promised...in addition to a quick update.

William hasn't left the hospital yet. He was supposed to come home last Friday but ended up getting an infection and has been on antibiotics since. His blood cultures have come back negative for infection for the last two days so hopefully he will be home tomorrow. He doesn't act like he feels sick...he is still acting like a two-year old!

Now for the pictures...

A Will to Walk - La Cantera Walk

A Will to Run - White Rock Marathon

Christmas for the Boys

Reilly was ready for a nap by the time we started opening gifts...until he heard the paper crinkle.

White Christmas

Antibodies Round Three - Happy New Year!

The last couple of weeks have been nice and relaxing. We had a bunch of family come over for the holidays and enjoyed a white Christmas (very rare for TX). The boys got way too many toys and Reilly's birthday is around the corner.

We just took Reilly to a pediatric opthamologist since his left eye turns in a little. The specialist said that he is significantly far sighted and has strained the muscles in his left eye (but it is correctable). He prescribed glasses (yes, for an 11 month old) and we are set to come back in March. If the glasses don't strengthen the eye muscles and straighten Reilly's eye, then we will try an eye patch. If the patch doesn't work, then he might have a minor surgery to fix his left eye...but that is many steps away. Did I mention that baby glasses are more expensive than Mommy's glasses?!? And they are not Coach or Prada! Luckily we had a very dear family adopt us for Christmas and their generous support covered this very unexpected cost. Thank You, again! God continues to provide! Pictures of our intellectual baby are coming soon....

William heads back to the hospital Sunday, with Aaron. Hopefully this round of antibodies will be easier than the last. Hopefully this year will be easier than the last. We have had an amazing year and an enormous amount of support from so many people. We just can't say 'Thank You' enough. Thank you God for all of the angels you sent us this year to weather this storm and for every day you give us the gift of life.

Happy New Year!
The Fallon Family

Home for the Holidays

I wrote this a couple of weeks ago and never posted it because I didn't have pictures from the the walk and marathon but here it is anyways...pictures soon to follow.

"William finished his second round of antibody treatments, late last Friday, and was able to come home. He still isn't 100% back to his normal self but he is making progress. When he went to the doctor yesterday, they said he doesn't have to go back to the clinic until New Years Eve. What a blessing! Usually he has at least one appointment, at the clinic, per week. Aaron is thrilled that he doesn't have to lug both boys to the clinic and back, for the next couple of weeks.


We would like to thank the many people that organized and came out for the "Will to Walk" 5K in our neighborhood, last Saturday. AND, thank you Amy Carenza for organizing a relay team to run the White Rock Marathon, last Sunday. Thank you to the relay team for running and all the folks that donated money to William's fund. We would also like to thank the family that adopted us for Christmas. What a blessing! We are overwhelmed with the support we've received over the last year. We really don't know the words...


Thank you sincerely,
The Fallon Family"

Many Thanks...

Well, tomorrow is Thanksgiving Day and I feel like we have a LOT to be thankful for. This morning I was on my way to work and I was listening to one of my favorite songs, "We Live" (right click and Open in a New Window) and I just felt so blessed for my life. I have a wonderful husband that spends every day taking care of our two beautiful boys who are healthy, growing bigger, sweeter and more precious by the minute. I have a loving family and friends who support me and a work family that is just as supportive. I am thankful for all of you. And most importantly, I'm thankful for a loving and forgiving God. I'm not perfect (yes, I said it and put it in writing) thankfully my God loves me anyway...it doesn't get more unconditional than that. Life is such a gift. So in the words of Superchick, "Get out and do what we we're meant to do. We live. We love. We forgive and never give up. Cuz the days we are given are gifts from above and today we remember to live and to love."

So, hug and kiss your family. Ask for forgiveness for your sins and thank God for all you have.

I would like to say Thank You to my best friend Amy Carenza-Offerdahl for organizing a relay team for the White Rock Marathon and raising money for William. Her team is called, "A WILL to Run" and here is what she is doing...

"In an effort to honor the strength William has shown us through these trials and raise support for his continued medical needs, the immediate family (and me) have decided to run the White Rock Marathon as a team. William's mother, father, aunt, uncle and me (the surrogate aunt) will be running on December 13th under the team name, "A WILL to Run." We are asking our friends and family to support us at this event by either sponsoring the team per mile or with a flat donation...there is no minimum or maximum gift - any amount would be appreciated.

If you're interested in supporting the team, please make your check out to "William Fallon Neuroblastoma Fund" and mail directly to my attention at the address below. Thank you so much for your consideration of this important cause.

Amy
Amy Carenza
SVP, Senior Client Manager
Middle Market Banking
901 Main St., 10th Floor
Dallas, TX 75202
214.209.0316"

Second, I would like to kick some shouts out to the Chiliheads in Albuquerque who supported their local Relay for Life, in honor of William...what a blessing from people who we've never met!

Finally, I would also like to thank our neighborhood - La Cantera. The entire neighborhood is hosting a 5K in William's honor, on December 12th. Here is more information:



Love, Angela

Maintenance Therapy

I've mentioned before that William is continuing with a maintenance therapy of antibodies, immunizations and oral accutane. If you would like to read more about said therapies, you can click on this link for a better explanation: http://www.curesearch.org/our_research/index_sub.aspx?id=7368

Right now he is taking accutane and visiting the clinic twice a week. His next round of antibody/immunization treatments are scheduled to start Sunday, after Thanksgiving.

Finally, here is a picture - from last night - of the boys in their matching jammies (courtesy of Nana)...

Love, The Fallon Family

On the home front...

William came home Friday afternoon so the whole family is home now...just in time for me to go on a business trip. :) Will looks great but he is still fussy and not feeling 100%. He goes in for a clinic appointment today and again on Thursday, just to check in. He will start the next round of antibodies, in two weeks.

Thank you for your continued prayers.
The Fallon Family

Update on Antibodies

William started the antibody therapy on Monday, and as we thought, he is in a lot of pain. Every day the doctors have to find the right mixture of morphine, Benadryl, Tylenol and Ativan. He is having mild allergic reactions and sometimes when he sleeps, his blood pressure will drop significantly low. All of his side effects have been manageable so far. His cocktail of medicines makes him sleep most of the day but wakes up starving at 2am (meaning Aaron is getting much sleep).

Thank you for your continued prayers - Reilly has recovered from his "jock itch". Please continue to pray for William's health and some rest for Aaron.

Graduation Speech - As Promised

Ladies and Gentlemen, Distinguished Guests, Faculty, Administrators, Friends and Family and, of course, the graduating Class of 2009. Good evening. Well Here we are. WE DID IT! You know it’s funny to think of myself as a college graduate. When my brother graduated from college he landed this great job with a commercial airline. So he shows up on his first day at work and his manager greets him with a warm handshake, and he hands him a push broom. He says “your first job will be to sweep out this hanger.” So my brother gets a little irritated by this and says “but sir I’m a college graduate.” And his manager, taking the broom from him, says “Oh, I’m sorry let me show you how to use it.”

In all seriousness it’s a big honor to be speaking to you tonight. A great deal of work has been done to get us to the point where we are this evening, so a few thank you’s are in order. To our professors, who throughout the years here at Embry Riddle have taken great pride in the academic success that we are enjoying tonight. Like many of us they have careers and work during the day, however they always go the extra mile to teach and give a real world, outlook to ensure our success in today’s demanding world. For that, thank you for your love and for your efforts. Thank you to the ladies in the registration office. Your guidance and administrative support is the backbone of our Fort Worth campus. Thank you to our classmates and friends that have been with us on our educational journey. They have been there with us in the good times and the laughter, but also in those tougher moments of family or personal crises. And most importantly our family, especially our spouses that have been there for us. They have supported us all these years picking up the slack while we were in class. Our parents that love us, care about us and continue to have huge dreams for us. On behalf of the class of 2009, thank you all for the combined efforts of our academic success. A big mental hug to you all. Finally, 2009, when you have a quiet moment in prayer, say thanks to your Maker, for he fashioned you and molded you and gave you the skills and talents you have been developing all these years.

For me, tonight is an accomplishment that less than a year ago seemed more than a million miles away. You see, in January this last year, my son William was diagnosed with a rare form of cancer and had to stay in the hospital for a very long time. This all happened at the same time my youngest son was born 6 weeks premature. I had both my sons in the ICU at the same time and, then and there, school was the last thing on my mind.

Over time, with the help modern medicine, and a whole lot of prayer, William began to get better. He was put on a year-long protocol that consisted of aggressive chemotherapy, surgery, a bone marrow transplant, radiation and finally immuno-therapy. I spent many nights at William’s bed side with little sleep and the feeling, THIS, that tonight was not going to happen for me, and for that I am so thankful, to God, my wife, my family, my friends, and my family here at Embry Riddle. I’m also grateful to people who said a prayer, who wished us well and went out of their way to make a small difference in a little boy’s life, and by extension, a huge difference in my life and the life of my family. It’s that element of the human spirit that I wanted to address here tonight.

When my son got sick my wife encouraged me to study, and keep on keeping on during a time when giving up on classes would have made life much easier. Of course my job was, First to make sure that William was getting the best treatment possible, and second to make good grades in school. So this became a real learning experience for me. On one hand I was studying and writing research papers on aviation safety, and on the other I had to learn everything I could about my son’s disease. I studied all the new innovative and cutting edge technology to make sure that he was getting the best treatment possible.

When word got out about my family’s unfortunate situation, we had people from all aspects of our lives offering their help and prayers. My wife’s work started a foundation and donated money for medical bills, cooked meals and brought us cleaning supplies. At the same time my boss, co-workers, and people I didn’t even know donated their hard-earned leave so that I could be with my boy in the hospital and not be without a paycheck. These are just a few of many kindnesses bestowed upon us in our time of need. I bring all this up for 2 reasons tonight, the first is to say thank you. I know that without their love and support there would be no diploma for me. The second reason is to encourage everyone here this evening to be the kind of people who pro-actively look for opportunities to make a difference in people’s lives. After what has happened to us, it is my hope that we never again pass up a chance to do something for someone in need or to be an angel when one is so desperately needed.

In his epic poem Ulysses, Alfred Lord Tennyson wrote that “heroic hearts are made weak by time and fate, but they are strong in will, To strive, to seek, to find, and not to yield”. I would like to challenge everyone here tonight to find that heroic heart, that momentum to know that as you make your way out into the world tomorrow that you have left it a better place than when you’ve came in, that you’ve changed someone’s life for the better. My life has been changed for the better. My boys are both doing great and I cherish every moment I have with them. And so this evening, I wish all the best for my fellow classmates, the 2009 graduating class of Embry Riddle. May the dedication and devotion we have put into our studies here, reward each of us with success and a bright future. And when the time comes, may we be able to say that we have lived life to the fullest and that we did it deliberately. And if the chance ever comes to make the difference in the life of a fellow human being, it is my sincerest hope that we do it willingly and with our whole hearts. Thank you.

Graduation + Antibodies

Well, Aaron may have a couple of classes to finish but he has officially "walked". Like I said before, he was the student speaker for his graduation and did a great job...so great that he received a standing ovation. I will add his speech as a separate post later for those who want to read it.

William got a 6 hour pass to see his daddy speak and walk across the stage...

William will start antibody treatments today so please keep him in your prayers. We understand that the treatment is very painful. When the antibody attaches itself to the surface of the cancer cells (which are nerve cells since neuroblastoma attacks the sympathetic nervous system), a message is sent to the brain and the patient will feel pain. The pain can be localized to one place or felt in many places. Considering William's tumor was in his left side, I would assume that most of his pain will be in that region. Other potential side effects include high blood pressure, vomiting, and severe allergic reactions. Please pray that these side effects are minimized or non-existent.

More to come as Will goes through this new therapy...

Love, The Fallon Family

Checking in...

Sorry it has been a while since I've posted an update. It has been a really crazy couple of weeks and I'm a little tired. So, forgive me for writing like I talk and keeping it short...or as short as possible.

First, William's EKG came back completely normal. In fact, we think that the first doctor didn't read his chart completely, to realize that Will currently has a central line (looks like a flexible white tube that splits into two) in the right side of his chest and his metaport (looks like a small cylinder, the size of a bobbin) in the left side of his chest. The thickening (or possible clotting) that showed up in William's scans were due to the two lines in his chest. His heart is healthy. Praise the Lord! Another scare dismissed.

Second, I know I posted that William was supposed to start his antibody treatment on Monday but that has been postponed a week. The boys were planning to go trick-or-treating on Saturday but William woke up from his nap shivering, with a 102.6 degree fever. By the time we got to the hospital (less than a 20 minute drive) it had spiked to 105. He received some Tylenol, fluids, started antibiotics and was admitted to the Oncology floor for observation. He hasn't had a fever since Sunday but will continue antibiotics for 10 days.

So! Thank you all for your continued prayers. William will still need prayers to fight his infection and hopefully will not have an allergic reaction to the antibody treatment. Also please pray for Reilly as he is fighting off a stubborn yeast infection (almost two weeks now)...it's always something. And pray for Aaron and I as we spend almost two weeks apart and are both exhausted. A quick praise: Aaron is walking for his undergraduate degree this Friday and they asked him to speak at the commencement -- what an honor! His speech is about the journey we've been on, over the last year and how he has persevered to finish his bachelor's degree at the same time. It's going to be great and I'm so proud of him!

Love, Angela

Please Pray

I'm sure you are all in shock that I would update the blog twice in one day. I just got off the phone with Aaron; and William has an appointment with a heart specialist tomorrow. William's echocardiogram came back with a few places that need further investigation (look like potential clots in his heart). The neuroblastoma (NBL) coordinator at Cook Children's said that there is nothing to worry about, William has never had heart problems and it is normal for NBL patients to have abnormal echo results from the medicines they take. Please pray for him anyways...

Sincerely, Angela

Some Results & Boys Growing Up Too Fast...

We have received some initial results from last weeks scans. The CT scan and bone marrow aspirate/biopsy came back normal. The verbal response from the Oncologist was that the MIBG scan came back normal but we haven't seen it in writing yet. Please keep praying.

As for my two little boys, they are not so little anymore...little Ri-Ri just had his 9 month wellness check and he weighed in at 23lbs and 9 ozs! 29 and 3/4 inches tall! 90th percentile all around...The Dallas Cowboys haven't started calling yet but we are expecting the phone to start ringing any day now. :)

I think Will gets taller everyday and is saying more words. His last audiogram came back with additional hearing loss (his left ear worse than the right) and the audiologist said he may have trouble saying the F sound ('ph' included), the TH sound and plurals (an S on the end). However, Will and I were laying in bed last night and he pointed at the fan and said some word that did not sound like FAN. So laying just to the side of his right ear I said, "William, look at me (so he could see my mouth make the word), that is a FFFFFFan, FFFFan, like FFFFeet." He smiled and said, "fan." It was so sweet to my ears. I just praised him, high-fived, busted knuckles and we both repeated the word a couple more times. He thought it was a fun game but I thank God for proving the audiologist wrong! :) Maybe I'm just a little competitive. :)

Ok, ok more pictures...


Here is more from the FuzzHead - getting more hair, eyebrows, and eyelashes:




And Reilly Roo loving the bath tub and pulling up on everything!




Love to you all...The Fallon Family

Week of Scans + Crazy Animals

This week William will have a bunch scans back to back. Like before, he will go through a 12 hour urine/kidney analysis, MIBG scan, CT scan and and bone marrow aspirates...all to make sure their are no signs of progressive disease. After we get all of the results back, he will be admitted for four days to start his first cycle of antibody treatments.

Many people ask me what the antibody treatment is and it is a little hard to explain. The antibodies are a protein made in cultured cells, using DNA technology to morph/fuse a human antibody with a mice antibody (called ch14.18). The ch14.18 binds well to neuroblastoma (NBL) cells and to tumor cells that are positive for GD2 (a sugar lipid that is strongly expressed on the surface of neuroblastoma cells), and helps destroy cancer cells. It binds very little to normal tissue, unlike chemotherapy that kills most rapidly-forming cells, normally found in our bodies. So to put it a little more simply, these little cooties can ID, bind to and destroy the neuroblastoma cells, but only on a small scale and only specific types of NBL (there are many types). Sorry for going technical on ya...

We are grateful that the antibodies don't beat up on Will's immune system like the chemotherapy but the therapy does have it's own side effects. The treatment does cause significant pain because it is pulsing the nervous system.

Bottomline: Please continue to pray for William as he undergoes this week of testing. Pray for clean test results and that Will will endure the antibody treatment as amazingly as he has everything else. He is truly one tough blonde kid. Oh, did I mention his hair is coming back in, just as white blonde as before. :)

Here are a couple of recent pictures of the boys, in their halloween costumes:
This giraffe looks very excited...



Look who can reach the door bell (and the deadbolt!)...





Then things got a little silly when we gave William his favorite new toy -- a whoopee cushion -- to get him to sit down

New Fuzz Pic: you can see the fuzz on his head, if you click on the picture...

More updates to come...Love, Angela