Glad to be home

Tucker and Will in their new cars on Park street today at 5PM


Will got home last night and the first thing he did was to run out into the backyard and start to play. He was a little unsteady but he seemed much better. He drank lots of milk and ate a little bit of food. We gave him all of his medicine for naseau (orally for the first time since he was getting them via IV) and then proceeded to get sick about 45 minutes later. We cleaned him, and the kitchen, and then he eventually went to bed after 9pm and was sleeping soundly. We had to wake him up around 1:30am in order to give him some medicine...normally I would have let him sleep but he needed to get Benadryl to counteract any of the side effects from the reglan that was still in his system. He stopped getting reglan in the hospital but you have to give benadryl for 24 hours after you stop to be safe. This was a bad idea...he took his medicine but when I went to put him back to bed he wanted his momma...I put him in his crib at around 2:30 but he looked a little green so I picked him up and he got sick in his room...luckily we had a bucket handy so it wasn't too bad. After getting sick he went back downstairs where he made it clear that he was watching the Wiggles and no one was stopping him, so he watched the Wiggles, drank milk, drank yogurt, and ate an extraordinary amount of cheese. He literally ate so much cheese that I had to stop him...and he wouldn't stop..he kept yanking on the fridge screaming for more.....eventually he stopped eating cheese and went into the front room of our house where he found a present from Aunty Bridget and Uncle Carl that we were hiding...it was a red car he could drive and I could push the handle....so we did laps around the house from about 3:00 until 4am...that was loads of fun...Eventually he went back to bed at 4am and slept until about 7:15 when he woke us up getting sick in his crib. We brought him downstairs, changed his sheets, gave him his medicine and called Nana Daryl and Papa Ed at 7:30 in the morning asking for help. They came to the rescue at about 8am....and stayed past noon until he Visiting Nurse (VNA) showed up to give Will his daily shot. This was reason #3,517 since Will was diagnosed why I am glad we bought a house in Braintree..
VNA gave him his shot, Will took his meds, and went down for a nap. His eyes are still a little sunken and his color and energy are a little off but he ate a ton with his grandparents today and was double fisting handfuls of cottage cheese before he went to bed. Below I have posted the names of the two drugs Will just got in the hospital along with their side effects.
Etoposide (VP-16) - Commonly: nausea and vomiting, hair loss. Uncommonly: serious allergic reactions with chills, fever, low blood pressure and breathing difficulty, low blood pressure, swelling or itching of the face, hands and feet, a small risk of developing leukemia.
Cisplatin - Commonly: severe nausea and vomiting and mild, reversible kidney damage. Uncommonly: serious allergic reaction, with low blood pressure and breathing difficulty, severe or irreversible damage to the kidneys, hearing loss which may affect the speech range, ringing in the ears, tetany (spasms of the muscles) or seizures due to chemical imbalance, damage to peripheral nerves that transmit sensations and control body movement.

Heading home...

...Will is in the car with Dina and Aunty Kim and he is on his way home. He should get home sometime afer 7pm.

One more night....?????

On Monday night Will got up at 3:00am and got sick, and then got up again around 3:30 to get sick again. He fell back asleep but then woke up yet again at 5:15 and got sick just around when Papa Ed showed up. They gave him some more medicine but he would not go back to sleep, but luckily he has not gotten sick again today (as of 2:30pm). However, due to the fact that he got sick last night they changed his pain medication dosage, again, and want to keep Will in the hospital for observation to see if the reglan causes the shaking or any other symptoms. I woke up at 2pm and called Dina to find this information out...so we are waiting to see if he will be discharged today. Dina's sister Kim came up from RI this morning and left her car at the house so that she could go in with Dina to the hospital today. Will's oncologist is meeting with he doctors on 7 West right now to figure out what is going on but it sounds like it will be another night in the hospital tonight.

Happy Memorial Day

Well....happy memorial day!!! I used to think a long weekend was not complete unless you did at least three of the following: got a sun burn, ate food cooked on a grill, realized yet again how ice always makes beer really cold, spent time with friends, drank a little too much, or overdid it in the yard trying to make up for months of neglect. A weekend on the pediatric oncology floor of a hospital was never really on my radar of "things to do" when making plans for a holiday weekend, however as hard as it may be to believe, it has made me feel lucky. Lucky to have such a supportive family, lucky to have great in-laws, lucky that Will is such a perfect little man, and truly lucky that we know we are going home Tuesday. People are actually worse off than we are, or are here for the next six months with their 8 month old, others are staying in the "end of life room" at the far end of the hall that you intentionally stay away from. Things are not great, but they could always be worse and Will makes it so easy to forget that we are living in very bad place.
Will had a lot of visitors today..when Dina got here she found both papa ed and grandpa at Will's bedside (that must have been funny). Later in the day Jessica Cabral was great enough to stop by and brighten their day followed by Aunty Bridget and her sister Tara (Will's buddy) in the afternoon.
The parkinson's shakes have subsided but that has meant Will gets sick a couple of times a day..he is pretty sleepy and does not really eat much, however we hope that changes as soon as we go home. He loves to ride the cab around the halls.

Third day

DINA TOOK THIS PICTURE TODAY WITH HER CAMERA PHONE


I got back to the hospital at 6pm Saturday night and Will really wasn't feeling well...he wouldn't let Dina leave the room and was so fussy that I was nervous that he had a fever. We called the nurse in and he did not have a temp so I asked her if he was due any medicine...she had forgotten to give him his 4pm dose so that explained why he was not feeling well..... Eventually he calmed down but he didnt' fall asleep until 9pm so Dina stuck around until he fell asleep. He slept comfortably until about 3am when he woke up to get sick, he fell back to sleep without a problem. We have been concerned about some parkinson like movements of Will's hands....Dina had the doctors check him out and they did see his hands moving and they told Dina that it is a side effect of reglan. We are going to skip his next dose of reglan. Even though they say it is fine, to see him doing this is very unsettling and makes you wonder if there could be some sort of long term neurological effect. We'll see how he does without the reglan and then decide what to do. It is tough to choose between controlling his vomitting and having him shake, or having him get sick all night.

We will try having Will get it every 12 hours instead of every 6 to see if that helps.

Second Day

Will's second day went well...his grandpa, and Nana Ginny kept Dina and Will company in the afternoon playing with stickers, balls, and toys. He didn't get sick all day, and although he is a little sluggish he seems ok. I got in after dinner time and Dina's parents went home. It is tough for Dina because Will has always been very attached to his momma and it is hard for her to leave his side as he cries for momma until she comes back. Dina has stayed late both nights until Will is asleep to make it an easier transition for me.

Papa Ed arrived at 5:30am again and sent me on my way. He stays with Will until about 10:30 or 11 in the morning giving Dina time to come in and get settled. It is very big help as it allows Dina to get some sleep in the morning without having to come in an 'relieve' me and lets me go home and get some sleep as I am unable to do so in the hospital. I got up at 2:00 today and when I checked in with Dina I learned that Will got sick while eating his waffles this morning with Papa Ed. But he is doing better now...he was about to fall asleep for a nap and they had started day three of his chemo.

Waffles with Papa Ed Friday morning

On Will's first night he started getting sick around 8:15pm and this went on for about three hours before the nurse gave him another drug in addition to the steroid, zofran, and atavan. This fourth drug is called reglan and Will has to be given Benadryl before taking it since one of the side effects is the fact that his whole body could go painfully rigid...that did not sound like fun so we have never given it to him before but the nurse assured us that the Benadryl works and that it is a great drug for chemo naseau. He took it at around 11 last night and since then he has been doing very well. Dina went home to sleep and I spent the night in the room, the staff has been great. My dad, Papa Ed, came in a 5:30am this morning and sent me home to sleep. Will slept until 7:30 and then had waffles with papa ed, he ate two of them but only after getting some syrup on them. Dina went back in this morning and I just got up to check in. He was sleeping, at his usual naptime, and they started his chemo at 1pm. He gets it for three hours today, two hours of etoposide followed by one hour of cisplatin. We are hopeful that the combination of steroids, zofran, atavan, benadryl, and reglan can continue to keep him comfortable. Will's room mate is a young girl named Molly, I'm wondering if Will' thinks his dog is on the other side of the curtain every time her parents say her name...I wonder if the hospital is going to object when I bring in a grill and cook hot dogs and wave an American flag all weekend

Back on 7 West 5-25-06

Will got to the Jimmy Fund at 9am today and got his pre-hydration for three hours and then his chemo. After they finished we walked across the street to children's and Will got a room on 7 West. We have not been here since the first week he was diagnosed back in March of 2005. Today he got cisplatin and they say this is the worst drug for naseau and vommiting. The symptoms hit six hours after you get it and last for 24 hours. He gets this every day for five days...we are roughly at hour 5. We are hoping for a good night

More testing 05-19

On Friday we had to go to nuclear medicine at Children's so they could test Will's kidney function. We got there at 9:30, he got an injection at 10, and then he had to come back at 12, 1, and then 2 so they could draw blood. The injection levels in the blood each time the took blood allowed them to see how his kidneys are funtioning. This will give them a baseline to compare future tests with to see if his upcoming chemo damages his kidney function. His kidney function is normal, and they tested his heart and hearing which were also normal.

We have to be at the Jimmy Fund at 9am on Thursday morning where they will begin his chemotherapy and then during the day we will walk Will over to Children's where we will stay until Tuesday night or Wednesday morning on 7 West.
Less that two days now until we have to be there and the anxiety is quickly mounting, hopefully we will be able to get some sleep.

We can update this blog via email so I will do my best to update it while we are in the hospital to let you know how Will is doing.

What to expect...lucky # 26

The initial treatment that Will took part in was a clinical trial. It was designed for kids with intermediate risk disease and was created by a doctor in Australia and was opened in 1998. It closed in the fall of 2005. So for seven years in pediatric oncology hospitals all over the world doctors like Will’s gave this same treatment to kids like Will. For kids like Will, this treatment worked for 9 out of 10 kids, a very good percentage when you are banking on the odds of your 7 month olds survival. All the doctors kept saying that Will had a very favorable prognosis, given the tumor biology and the fact that he was diagnosed under the age of 1 (being less than 1 at diagnosis is statistically significant in improving your odds for some reason). Therefore, we had all the reason in the world to think that this would be a long year, and then Will could resume his path towards being the starting left fielder for the Red Sox.

600 kids a year in the US get this disease, so you figure, how unlucky do you have to be to get it, and then be the 1 out of 10 kids that the treatment does not work for? Well, that is were Will stands right now. According to the doctor in Australia who created this clinical trial, in the past 7 years..WORLD WIDE...there have only been 25 kids that this treatment did not cure...making Will #26. Of those 25 kids, everyone has tried different treatments, some have had success with the drugs that Will just took...but it didn't work for him. All that is left now is the high dose stuff...which is scary..because if it does not work then we are out of curative options...if it does work...the odds are much higher that Will is going to have long term side effects that can potentially impact his hearing, sight, heart function, and growth (Will is going to stop growing while on high dose chemo and will resume when he goes off treatment, but he will have missed out on a year’s worth of growth)

The plan is to give Will the first two rounds of high dose chemo outlined in the 34 dat protocol...and then to do the Cat Scan and MIBG scans again. We will know if this treatment has a chance to cure him after these two cycles...if it does not work, then we will have some decisions to make.
However, I still like to believe that Will is going to beat this disease and still play left field for the Red Sox...only this time I now know what number he will be wearing...lucky # 26.

Unlike the past, this chemo will be done inpatient, so starting next Thursday Will is going to be in the hospital for 6 days (five days of chemo followed by one extra day of fluids). This will be a long week due to the fact that his vomiting will be more severe than in the past. Then, 21 days after the first cycle starts he will go in the hospital again for his second round. Once he gets to go home after the second round we will go back in to find out if this can cure Will. Therefore, we will have an answer in about 30 days or so.

Strike Two - Friday May 12th

We went in for Will's Cat Scan and MIBG scan on Thursday May 11th. This was THE day...we were to find out if the new intermediate dose of chemo was going to do the trick. It did not. We did the MIBG scan at 7:45 am with Will's favorite Greek technician...he held her hand and walked out of nuclear medicine waiting room and into the scan room with her...leaving us in the dust. During the scan we can look at monitors in the room and it did not look like there were any new large areas of disease so we were hopeful, I even thought the tumor looked smaller. We then went on to his CAT scan...this was done in short order and soon enough we were home. We then waited by the phone for the results. On Thursday night Will's oncologist, Sid, called us and said it appeared that Will's tumor did not shrink. There are four possible outcomes we could have expected, the disease grew on treatment, the disease was stable (which is what happened to Will), the disease had a partial response (decrease in size of > 10%, the disease completely disappeared.
Although stable disease is better than the disease growing, it also means that this regimen will NOT cure Will. This was very disappointing. This chemo regimen was a breeze, it was well tolerated, and was done at home. We needed this to work, but it did not. That leaves only one option left on the table that can be considered a cure. Will is now going to start a protocol called 34 dat which was created at Dana Farber to treat the high risk kids. These are the kids who come into clinic who are older than 1, say around 2 ½ or older, and have the fast growing Neuroblastoma that has spread all over, including their bone marrow. These kids used to have no hope, but due to treatment advances in the past decade, roughly 50% of these kids survive. At the Jimmy Fund, these kids immediately are put onto the 34 dat protocol which is five rounds of high dose chemo, followed by two stem cell transplants and possible radiation, and then followed by six months of treatment with oral medication (a variation of the acne drug Accutane). I don't know why but the kids who get this oral drug have shown to be less likely to get a recurrence than kids who don't take it.
This protocol is reserved for kids of last resort. That is where we now find Will.

Will's first fever Since March of 2005

On Saturday, Will had a lot of energy from his blood transfusion the previous day but did not sleep much the night before. He was a bit cranky all morning (he got up at 5:30am) and was not quite himself. At 1pm we had the VNA come to the house to check his vitals and give him his G-CSF shot to boost his ANC. His temp was fine and he went down for a nap.

Around 3:30 he got up from his nap and felt hot...too hot...so we took his temperature and it was 100.7 F so we paged the oncologist and kept taking his temp. At 4pm it was 101.3 so we packed his bags and headed in to the ER at Children's. Upon arrival Will was so uncomfortable and was inconsolable. They took his vitals and in an attempt to give him Tylenol he got so worked up that he made himself sick. After being moved out of the triage area to a room we got his DVD player out and tried to calm him down.

They have to take some blood (to test his ANC) and if his ANC was still low like yesterday's 440 he would be admitted to the hospital and given IV antibiotics every 8 hours. They also did some cultures to see if there were any infections in his blood that take a day or two to come back. While we waited for the blood results Will was give the first dose of the 8 hour antibiotics due to oncology protocol. Eventually, at around 8:30 we found out that Will's AND had gone from 440 to well over 5,000. This was great news as it meant that he did not have to be admitted, instead, they needed to give him another anti-biotic, this was a 24 hour dose. His fever had come back down to almost normal and the good news was also that his ANC count meant he no longer needed to get any more G-CSF shots for this round.

We got home at around 10pm and Will eventually went to bed. He was feeling fine in the am and eventually went over to Nana Daryl's and Papa Ed's for a few hours on Sunday morning so Dina and I could get some rest and recharge.

Now we wait for the Thursday the 11th for Will's CAT scan and MIBG scan to determine if this chemotherapy is working, and if it can continue.

How 4 hours really means 7 at the jfc

We got a call on Thursday stating that Will's crit dropped even lower and that he needed a blood transfusion. It has been a while since we got one for Will so I asked his nurse on the phone what we should expect for a timeline. We were to arrive at 10 where they would take a blood clot and send it over to the blood bank. They would type it and find the best match O+ match and send it over. This takes about 1 to 1.5 hours. He would then get the blood over a 3 hour period before he could leave. So you do the math in your head...10am arrival....Noon (at the latest) for the blood to arrive, 30 minutes in getting a bed and getting started...3 hour transfusion. So factoring in an extra hour for delays we are out the door at 3:30....

Even after maxing out the time and then adding on an hour I was still wrong....we were there until nearly 5pm. It doesn't seem to matter what you are going to the Jimmy Fund for...it just ALWAYS ends up being a full day. Will's ANC was below 500 so he was very susceptible for getting sick...just what you want to hear when you are in a hospital for 7 hours surrounded by kids and you son spends two hours in the play area waiting for a bed

It's back...Recurrence of NB...Feb 06

After our follow up scans in early February things were looking good. We had gotten to this point, relatively unscathed, and were looking forward to a normal life with Will. The next day at work I got a call from Will's oncologist because he got the report from radiology on Will's Cat Scan and his MIBG scan in Nuclear Medicine and wanted to go over them with me. Here is some background on these two scans...

The CAT scan is simply a 3-D x-ray that allows the Doctors to see his tumor in more definition and allows them to take measurements to see if it has grown/shrunk/changed at all. Will has to be put under for CAT scan’s since he has to be motionless.

The MIBG scan is done in nuclear medicine where on one Day Will is injected with a radioactive dye along with a chemical that is absorbed by his tumor. This allows him to come in the next day and get underneath a machine that reads radiation...since they pumped it into his body and it is absorbed by any tumors in his body they can get a good look at the tumor...and potentially any new sites that may have cropped up that were not there before. Will has to be restrained in a tightly wrapped mummy like sheet for this one as it takes over an hour and he needs to remain relatively still. We have to sing songs and show him movies and keep him calm as no kid likes to be restrained underneath a machine for an hour. It's not too much fun, and I've lost count at how many of these he has had, maybe close to 10.

Anyway, the doctor had some alarming news for us...the cat scan showed two areas of the old tumor had grown by small amounts, not enough to be too alarming on their own, however, there was now a new swollen lymph node that appeared right next to his heart (just behind his breastbone) in the Mammary lymph node chain. This was Alarming and indicative of the cancer growing again in the area of the original tumor. This may mean a local recurrence of NB.

In addition, the Nuclear medicine team had more deflating, and potentially HORRIBLE news. They found two NEW areas that showed absorption of the radioactive dye that were outside of the original location. One in his left arm near the elbow; and the other in his bowel. This would mean that not only did his cancer come back, it came back with a vengeance and was disseminated...if this was the case it was extraordinarily bad news.

The next steps were to further scan the bowel and arm to see if they are in fact new areas or if they were just 'pooling' of dye in certain areas. If you swap the first two letters in NUclear medicine you get UNclear medicine which apparently is some sort of inside doctors’ joke. It is a very useful scan but it can sometimes be a little less precise than most of the scans doctors are used to dealing with.

So, now in order to pretend that there is no way his cancer has come back we have to hope for the following... the growth areas on his old tumor are nothing, the new swollen lymph node next to his heart is a coincidence, the two new MIBG spots on his arm and in his bowel are mistakes from the dye having pooled in two areas. The chance for all of these things working in our favor is slim.

In order to find out what is next they order a CAT scan of his bowel and arm to see if those MIBG spots are in fact 'real'. The thinking is that the bowel is nothing, but the arm is very faint and may be something. The CAT scan shows that the bowel is fine and they can not see anything in the arm either. We are very relieved at this news as now we only need to worry about the lymph node in his chest, and we can deal with a local recurrence but we do not want to think about disseminate disease. Our next step is to meet with the surgeons to discuss removal of the lymph node to test it and see if it is in fact cancerous.

However, before this can happen, the oncology team is not convinced that the CAT scan could in fact show the spot in the arm since it is so faint and they can not tell if it is in his tissue or in his arm. Therefore, they now order an MRI of his arm to make sure. We thought we were past this; however, it was just one more test. So we had to come in for the scan and Will had to be knocked out which means No Food or Water after midnight. We got to the hospital at 11am for a 12 o'clock scan. For whatever reason, it was delayed and Will was not knocked out until 2:30!! Keeping a kid from eating and drinking, in a hospital, until 2:30 is stressful, and when you have not eaten is extremely stressful, especially when Will naps from 12 until 3pm most days.

Anyway, after all of this stress, and all of the stuff that went on in the month of February began, we were in the recovery room when Will's oncologist appeared. This is not a good sign...and he went on to tell us that the MRI did in fact pick up a pea sized growth on Will's arm right near his elbow. So what we had feared the most was now delivered to us after an extremely stressful day at the end of an extremely stressful month. Needless to say, this was the worst moment of my life other than the day Will was first diagnosed.

Once the words came out of the doctors mouth I finally hit rock bottom. I had nothing left, all of my optimism and hope was drained from my body right through my chest. We went home and I was as physically, emotionally, and spiritually empty as I could ever be.

Then, what happened next was a good thing for Will's prognosis but very disconcerting for our trust in Will's care givers. What happened? Will's oncologist, in an attempt to find out if this new spot was in fact new disseminated disease or if it was there in any earlier scans, found something that was unexpected when he looked at the prior scans. When looking at all of Will's prior scans he discovered that this faint spot on his elbow appeared on EVERY SINGLE SCAN they had ever taken! In fact, on the very first scan he received when he was diagnosed, it is not only there, but it is in fact brighter than it was now since the chemotherapy in the meantime had (most likely) converted this spot from cancerous to non-cancerous.

What does this mean? It means that Will does not in fact have new disseminated disease; it means that he was mis-diagnosed when he first presented. Instead of being a Stage III intermediate risk, he should have been Stage IV since the cancer had spread outside the region of its original location. We were assured that even had this been known originally, Will would have received the same exact treatment that he already received, the only difference being that they would have been more guarded in their optimism of his prognosis. How did this happen? The location of this spot is right by your left elbow, the same area where these injections are given so the doctors assumed that these sports where the injection sites and that there was some ‘leaking’ at the site of the injection causing the faint spot on the scans. However, the problem is that the doctors in Nuclear Medicine failed to check the chart to see where the actual injection was done. The very first injection was done in his PICC line on his RIGHT arm, two others were done IN HIS FEET. What happened here was a procedural breakdown, human error, and an unfortunate location for disseminated disease to appear. The nuclear medicine doctors just assumed it was the injection site and never tested it. Thanks to this, our family spent three weeks in February of 2006 in a living hell that was completely unnecessary.

So now, the next step was for Will to undergo the SAME EXACT surgery he had performed in August a second time. This time they would remove the new lymph node, take out two areas of growth from the old tumor, and then make a new incision on his neck to look at the lymph node area there which looked swollen. This was scheduled for March 20 of 2006, one day before the anniversary of his diagnosis. They would take a look at the tissue they removed while he was in surgery and if it looked cancerous they would install a port in his chest for administering further treatment. So now we waited….again.

From diagnosis to recurrence...(March 05 - Feb 06)

On March 21st of 2005, three days before Will would be 7 months old; he got a chest X-Ray at Children's Hospital Boston which found a large mass in his chest. The reason for the chest x-ray was that we discovered an enlarged lymph node at the base of his neck where it meets his left shoulder. It wasn't the pea sized kind that you sometimes find on kids after they get sick...it was large enough that we noticed it by SEEING it instead of feeling it. It was in the soft spot of his neck and when I touched it (back in January for the first time) I immediately knew something was wrong. It felt about the size of a very large grape and was 'squishy'. It made my stomach roll, because I knew that nothing in that location should ever feel like that.

We first went to his pediatrician who recommended we go to Children's and get an ultrasound of the node. They did the ultrasound of the node and they took a look at all of his major organs to see if there were any abnormalities (tumors) and nothing was found. As I later learned, each lymph node is responsible for 'draining' certain areas of the body and this was a supraclavicular node which would 'drain' the chest. An enlargement here would indicate a possible malignancy of the chest.
After the ultrasounds showed that the lump was in fact an enlarged lymph node, it was decided by our pediatrician that we should see a Pediatric surgeon to determine what the next step would be. My aunt has worked at Children's as an RN for her whole career and after speaking with her, she did the first of countless favors in helping us with Will's treatment and that was to get us an appointment with the Chief of Surgery at Children's.... Dr. Shamberger. The appointment to see him was about a month out so we just had to sit tight in the meantime and wait to see him.
The lump was on Will's left side, and one other thing of note was that he had a slight eye droop (the top lid seemed almost swollen) on the left side as well. We did not think they were related but we did think it odd that they were both on the left side...Will was born via a C-section after attempts at a natural delivery failed due to his size (10+ lbs) at birth. When he was born he had a very large and pronounced bump on the back left 'corner' of his head from the failed attempt at delivery. We suspected this was related (since we are not doctors we were reaching for answers)

As it turned out, during our wait to see Dr. Shamberger Dina took Will to visit her parents in RI and while down there her parents noted that Will's left arm seemed 'swollen' almost as if filled with fluid. When you compared the two arms side by side you could see a significant difference, which scared us. Therefore, we called up Children’s to make a new appointment, as fast as possible, with the first available surgeon. We were now worried that he had a third left side issue and wanted him to be seen.

We got an appointment with another surgeon and explained the situation: enlarged supraclavicular lymph node, left eye droop, and swollen left arm. She took a look at him and said the eye droop was not a problem, the arm was 'baby fat' and that the node was unremarkable. She recommended that we just watch it for a few months and if it did not go away, to come back for another appointment. She ordered a blood test (which was inconclusive), but other than that, sent us on our way.
This was good and bad...It was good because it was EXACTLY what I wanted to hear and helped justify the denial I was living under....It was BAD because Dina and I both knew that something was wrong. I chose to blissfully follow her advice and ignore my gut feeling...Dina trusted her gut and her mother’s instinct.
We told our Pediatrician about our visit and she was still not impressed....both our pediatrician, one of her colleagues, and my aunt were still advocating that we still keep our appointment with Shamberger. As we later found out.....from Doctors, Nurses, parents of other patients, etc...we were very lucky to have an appointment with Dr. Shamberger so we decided to keep the appointment.
Before that took place we got a call from our pediatricians office telling us that she consulted with another surgeon at Children's and they decided that we should get a chest x-ray of Will. This was on Friday morning and I told Dina that I thought we could wait until Monday...if it was going to be bad news...then I'd just assume get it on Monday and just have a normal weekend, so we pushed it off and decided to wait.

On Monday, I went to work and Dina went to the hospital with my mother to get a chest x-ray. As I was sitting at my desk I got a phone call from Dina saying that they did the chest x-ray and that the found a mass in Will's chest...I hung up the phone, got in cab, and headed to the hospital emergency room.

We met with Will's eventual oncologist, Dr. Sid Rao, his surgeon Dr. Shamberger and they told us that this was most likely a tumor growing out of nerve cells next to Will's spine that is cancerous and called Neuroblastoma. We were to be admitted that night and we spent about a week in the hospital where they did scans, did a bone marrow biopsy, a tumor biopsy, and various other tests. It was determined that Will had Stage III intermediate risk Neuroblastoma. This measn that the tumor had grown large enough (baseball sized) that it was now large enough to be on both sides of his spine and since it had crossed the mid-line (spine) and spread to the lymph node in his neck that it was Stage III, not stage II. It was not stage IV since it did not spread out of the region or into his bone marrow. It was intermediate risk because the tumor biology was not the 'fast growing' type of tumor. With this diagnosis combined with Will being less than the age of 1, he had a very favorable diagnosis. What does that mean?

Statistically, kids with this diagnosis do very well (some studies say 80-90% cure rate) as opposed to kids with the fast growing tumor that are also older than one. That is a 50-50 proposition at best. We were obviously upset, but we felt good about his chances given the fact that he was in a favorable category as far as NB goes.
At the end of the week all of us (Will, myself, Dina) came down with a horrible bug that caused us to get sick and spike a fever. As we were on a pediatric oncology floor we had to stay away to avoid getting anyone sick so Dina and I were locked up in a hotel room across the street getting violently ill while my dad was staying with Will in the hospital through his first round of chemotherapy.

It made a very bad situation intolerable as our son was just diagnosed with cancer and was getting chemotherapy pumped into his body while sharing a hospital room with another family. We were so lucky that any thoughts we had previously given to moving out of state in the past never came to fruition because we wanted to be near our family...thankfully they were here to help. Eventually we got better and were able to stay with Will for his last day in the hospital before heading home.

The plan was as follows: 8 rounds of chemotherapy as part of a clinical trial to shrink the tumor as much as possible...followed by surgery to remove what was left. The chemo would be done on an outpatient basis at the Jimmy fund every 3 weeks for about six months. After six cycles, the tumor stopped shrinking so they decided to perform surgery on August 29th, the day Katrina hit the Gulf coast, and just five days after Will had his first birthday.

The surgery successfully removed about 85% of his tumor, but the remainder had to be left in as removing it would have damaged the nerves controlling motor function in Will's left arm as well as damaging a nerve that controls his diaphragm. This is normal for NB as the tissue is not like most cancers in that it ALL has to be removed to prevent it from spreading. Will spent about a week in the hospital and then we made it home. He had two more rounds of chemo just to make sure that whatever tissue was left was killed, or converted from cancerous (immature) to non-cancerous (mature) tissue.

We finished up with treatment in the beginning of October and started our monthly visits for follow up. By Christmas everything was looking good, and in early February we went in for his first round of follow up scans and blood/urine testing.
Everything looked great, and his oncologist eyeballed the scans and said they looked great...in fact, there was even mention of perhaps skipping his next visit and coming back in two months!

This was great news, it was about five months of living a normal life (finally) and Will was now walking, and his personality continued to grow. Other than being sick from treatment or surgery, he just seemed like a normal (bald) kid. No problems, no issues, and nearly 100 percentile in height/weight/head. We finally stopped being germaphobes and living in a bubble and started doing all the things normal kids do without worrying about Will anymore than a normal parent does.

Then....the next day....I got a phone call from Will's oncologist with some alarming news.