Latest & Greatest

I know it has been a very long time since I've updated the blog. No news IS good news. Both boys are doing well. William had another round of clean scans in June. Reilly's asthma is pretty well controlled with a daily breathing treatment. Aaron and I continue to fight sinus infections and strep this year; both of us have been through multiple rounds of antibiotics. I finally went to an allergist for testing, only to find out that I'm allergic to every TX lawn (Bermuda grass, oak and cedar trees, ragweed and pecan pollen...even cocklebur weeds!). Joy. So, I'm working on getting that under control.

We met with Make-a-Wish Foundation a couple of weeks ago, for round two. The first time we met with them, William was maybe 2 and half. When they asked him what he wished for he said, a Coke. :) We thought we should wait a little while before nailing down his wish. So this time went a little better. He told the wish granters that he either wanted to go to Bisney (Disney) World or a beach (we just went to Barbados for a week in June). I asked him which beach and he said, the white one. So coming this fall, we will either be at Disney World or on a white beach celebrating William's life! God is good!

On a different topic, and since I know I have your ear, I would like to ask for your prayers. We met a family from Abilene, at the beginning of this year, who had to move to Fort Worth in order to treat their son's advanced leukemia. He is 5 years old and his name is Liam. He had a bone marrow transplant, stem cells provided by his 3 year old sister, in March and was able to return to Abilene for the first time June 25. Four days ago, he and his family returned to Fort Worth because he has relapsed. He is already receiving a round of chemo and the family has a plan towards a 2nd remission. I'm asking for your prayers for Liam and his family. You can follow his story on his caringbridge page: http://www.caringbridge.org/visit/liamlowe. My heart aches with empathy for this family. I know they have faith and I have faith that God is working on blessings for them. Please pray for their peace and Liam's healing.

Thank you for your continued prayers and support.

Love, Angela

Reilly Turns Two!!

Our baby just turned two!! We had a small, family birthday party for Reilly, last Saturday. It is hard to believe it has been two years already since Reilly kicked his way out and William was diagnosed. We had cupcakes (a family favorite) and Reilly opened many books (he loves reading and drawing) and some Toy Story toys (the new favorite movie in our house).

Playing Catch Up

Well, I know it has been a while...so I thought I would do a little picture timeline to catch everyone up on the last few months.

Here are the boys helping Daddy put up the Christmas tree, Thanksgiving weekend:

Then we had an enjoyable visit with Fallon/Vorst family for a week, over Christmas. The kids had a great time playing with cousins:

Then for New Years, we went to Houston to see some Wilbers family. We spent quite a bit of time with my neice, Teagan. William LOVED holding her...I think he wants a little sister.

Pathology Update

The NB coordinator at Cook called Aaron back about an yesterday afternoon. The final lab results came back as spindle cell sarcoma. Cook Children’s Oncology position right now is to just continue to monitor William, meaning no additional treatment (chemo or radiation). Just as a precautionary step, we went into the clinic today to sign some consent forms for the lab work to be sent to the Children's Oncology Group (an international group of pediatric oncologists) for a second opinion/analysis. This is the best news we could have asked for! No more treatment and we will work in the further monitoring with William’s already scheduled NB scans. We are praising God for this wonderful news!

Love, Angela

Friday Post-Op Report

Welcome to the rollercoaster. The post-op report was not what we hoped it would be. William did end up getting his mass completely removed but we added a port to his chest. The initial pathology during surgery came up with ‘small blue round cells’. If you Google that you will come up with a few options, none of them are good and they are all a type of carcinoma, including NB.

William is recovering well. He is taking a nap with his dad, as I type this, and sort of watching the movie Cars. J We are on the Oncology floor of Cooks for tonight and should be coming home tomorrow.

We will not get all of the final lab reports until probably Tuesday, next week. Please keep praying for a miracle. We sure are.

Thursday Update on William

The last 24 hours have been very positive. When Aaron met with the surgeon yesterday, the surgeon mentioned that he did not feel like William’s mass could be neuroblastoma (NB) based on a few things. This surgeon operates on more than just children with cancer. He said the shape and location of the mass is similar to other children that run into something, broke some blood vessels and build up scar tissue. The mass is near perfectly circular; William’s initial mass was lumpy with tentacles. Also the mass is very close to the skin and a long distance from the original tumor. Usually a child must have cancer in their bone marrow for a new tumor to show up in a place not in, or adjacent, to the original tumor location. William never had NB in his bone marrow. The mass could still be tons of other things. The surgeon said the soonest he could remove William’s mass is Friday. We are signed up for 815.

Today William had his MIBG scan and to our surprise the surgeon decided to watch the radiology techs perform the scan. He stepped out towards the end of the scan to tell Aaron that so far, nothing has lit up…meaning, no NB! At that point, the scans were not final but this news was a breath of fresh air. Our plan is to remove the mass, send it to the lab for analysis and not put a port back in!

We are still praying that the mass is not a malignant tumor of any kind.

Monday Scan Results

We got some upsetting news on Monday and I have been sharing with folks as I encounter them. But I thought I would send out a quick note to let you all know so I will quit feeling guilty for not making personal phone calls to everyone.

William had scans last Friday. We got the results Monday around 1130 that he has a golf-ball sized mass in his left pelvic area. He does not ‘appear’ sick. You can feel the mass, it is very close to the skin. The oncologist said that it looks like neuroblastoma (NB) based on the CT scan. He will have a NB-specific scan tomorrow (called MIBG) and a bone marrow aspirate to see if the mass and bone marrow absorbs the isotope, like NB would. We might have the scans back by Friday but maybe not until Monday. We are talking to a surgeon today to see how difficult it would be to remove the mass. It needs to come out but that induces a new predicament. Once the tumor is removed, William would be considered without disease. That sounds great but we know that even one cell remaining could cause it to come back. There is no protocol for patients with no disease, only for relapse disease in bone marrow or inoperable masses. So then we would just follow the next course of action suggested by William’s oncologist which is 6 more months of low-dose chemo and radiation (which honestly sounds counter-intuitive to us considering the first round of therapy was every possible chemo, at the highest dose he could stand).

I’m sure you can understand that we are stunned considering he is acting like a very normal, rambunctious 3 year old as opposed to the sickly little boy he was when he was first diagnosed. We are also very stressed seeing as we need to act very quickly to understand what the BEST, next course of action is. And very disappointed that we put our child through a toxic 16 months for this awful disease to return in seven months. We have faith and hope that this is not NB. But we need your prayers for miracle healing, peace during the waiting period and God’s wisdom to make the right decisions over the next week.

Thank you all for continued support, thoughts and prayers.

10-4 Good Buddy

Pictures of the boys celebrating with Daddy's birthday cupcakes...

Been Awhile....

I know it has been awhile since I blogged and many things have happened. I feel like I just need to add pictures instead of explanations.

Here are some pictures from William's Cars Birthday Party:

Fun on the bounce house with the Boone boys

Blowing out the super-sized birthday cupcake...thank you Nicole for making all of the cupcakes!

Pizza, pizza, pizza

And some of my favorite new toys...

Scans Results

William got last week's scan results back today. The bottom line is that they will never be perfect. The AMAZING news is that he has less scar tissue (from his surgery, a year ago) than the last round of scans, three months ago. He is still cancer free! Praise the Lord!

Big Day Tomorrow!

Tomorrow, William is scheduled for CT and bone scans, followed by surgery to remove his port. That's right, you heard me. He is getting his port out!!!

This is a call for prayers. Although this is a huge milestone, indicating treatment is complete, surgery always gives me a little anxiety. Thank you all for your continued support, thoughts and prayers.

Love,
Angela

All Clear...

Reilly had multiple doctors appointments on Monday to prepare for his ear tube surgery on Tuesday morning. Just like the doctor said, it took less than five minutes. We were a little concerned Monday night since Reilly was wheezing and running a little bit of a fever. The nurse practitioner said that the only two things that could call off the surgery were fever and severe wheezing. So we gave him a breathing treatment the night before and the morning of the surgery. Everything went well. Aaron stayed at home with Reilly all day Tuesday, while Reilly slept. By the time I got home, Reilly was up walking around. I think he is already walking less wobbly. I think he can hear better too; he holds his ears when we turn on the TV.

William continues to act like an 'almost 3 year old.' I think he is making up for lost time...what a stinker. :)

Thank you for your continued prayers for my family. Happy Independence Day!
~Angela

Latest Report

William had an ultrasound on Monday to take another look at the spot on his liver. The report came back negative for cancer (most likely scar tissue from his surgery last year). Praise the Lord!!! He officially has a clean bill of health.

His next round of scans are in six weeks (6 months post-treatment) and we are now planning to have his port removed at the same time! That is huge! The port is necessary for chemotherapy and to think we don't need it anymore is nothing short of amazing. It is hard to believe...

Reilly went to an Ears, Nose & Throat specialist last week. He has had multiple ear infections in the last year (almost one a month). The doctor said that he still had fluid behind his right ear (even after 14 days of strong antibiotics) and tubes were a good option. SO, he is scheduled to have tubes put in on the 28th. ...another day in the Fallon household...another medical procedure.

Happy Father's Day!

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: