Going to a show

I dropped Will off for his last day of preschool today and it was surpisingly bittersweet. I was so very happy to see Will complete a whole year of school, something I wasn't sure we would ever get to see. But I also felt that Will thrived on the routine of school and feel that in about a week he is going to miss it.

We have been extremely fortunate to get to where we are today with Will. There are three months between now and September when he will hopefully be back with the same teachers in the afternoon session while hopefully feeling and doing as well as he is today.

Tomorrow Will is going to see "Backyardigans Live" with his cousin Emily. I will be chilling out at home with Evelyn but I know he is going to have a fantastic time at the show.

Yawn

Here you can see Will exploring the world through appropriate risk taking for his age (he is in the tree with his "big papi" shirt. Every athlete is either Big Papi or Tom Brady to Will).

He is playing with his buddies the "Rust kids" at a tree near the playground at Sunset Lake.

Will had me out in the backyard climbing on his swing set before we went to school today. It is hard to believe but tomorrow is his last day of pre-school. He really enjoys school and his classmates and we are working on getting him into a few camps this summer so that he can spend some more time with his buddies. Yesterday Evelyn and Will played nicely together with one of Will's old toys, one of those bead and wire toys that most pediatric waiting rooms have. They have 'shared' it before but it usually involves Will pushing Evelyn's hands off or yelling "NO" when she tries to grab some of the beads.

Last night Will actually was sharing one bead for each wire as Evelyn's. While not a 50/50 or even 80/20 split it certainly is progress. Evelyn is forcing Will to warm up to her because she laughs at everything he does and, try as he might to dislike her, he really likes when she laughs at this antics. It is great to monitor this slow but steady progress.

Deqlan received continued good news at his follow up scans which was great to hear.

Here is todays:
"Interesting observation that I may have shared before but it bothers me constantly so I need to share it."

Whenever I am in a crowd of people in public (either on the train coming to work, in a waiting room, or even at a bar or restaurant) there is a new affliction sweeping the nation that I like to call the "electronic yawn".

Everyone knows how if you see someone else 'yawn' you can't help but yawn yourself even if you try to stop it. An electronic yawn follows that same pattern but instead of a yawn people catch an 'electonic yawn'. This is when someone in your sight pulls out their cell phone or blackberry to text or email someone and invariably your hand, unbeknownst to you, slips into your pocket to do the same.

It is fascinating to watch and has reached the point where it has replaced reading the newspaper as my favorite activity on the train. I find myself in a constant battle of wills, with MYSELF, to NOT reach into my pocket and pull out my blackberry when I look up and see someone texting or typing. It is an instant reaction like blinking, and it takes actual effort to quiet this newly ingrained response.

I've found myself noticing that if no one is doing it on the train I'll take my phone out just to see how many people catch it. It is surprising how many people will do it.

It is a fascinating wrinkle to people watching on the train that I hope will now drive all of you just as crazy as it has been driving me.

(note: I must have yawned about 15 times in the past five minutes I spent typing this)

Will and his dog Molly

Will wanted to put on his "Molly sweatshirt" today and the two of them were playing out in the front yard before Kim picked up Will for yoga today.

Will also gave me a nice fake smile for the camera in this picture.



Before I left the guys showed up to install the swing set and it is now in place and awaiting Will's arrival home. To those of you who think I am some sort of ogre for denying Will a swing to hang from I thought I'd point out that Will's cousin Tucker has a swing set about 150 steps from our front porch so Will has not been deprived of this childhood joy...he just had to walk a bit further to get it. (And no Andy...he does not play nails and paint thinner in lieu of toys.)

Clear Channel emailed me today to say the first of the 3 billboards have gone up. The first one is on the McClellan Highway in East Boston. This is seen by people leaving the Callahan tunnel from Logan airport and headed to the north shore.

Remove the shackles

Will had a fun weekend and really enjoyed the weather. On Saturday night our friends Mark and Kim came over with their two dogs that Will loves. He thinks their puppy Rascal is his friend and he talked to the dog and played with him for a large amount of time as if he was playing with another kid. On Sunday our friends the Cabral's had us over for a cookout and Will had fun playing the their kids and the Cosgrave's. Monday found us basking in the sun in our backyard and Will wearing his new bathing suit as he played in his kiddy pool in what had to be 40 degree water from the hose in spite of the sun and heat of the day.

Tomorrow a swing set is FINALLY being delivered to our house. Will loves swing sets and it has been a VERY long time coming. However, I have to be honest that until this winter I was somewhat reluctant to buy a swing set.

I try my hardest to convey some of this experience via this webpage but at times I feel like when I do share the thoughts, fleeting or otherwise, that run across my brain that people feel that I am some sort of crybaby who sits around feeling sorry for himself and sobbing uncontrollably all day.

I'm not. I've managed to compartmentalize a lot of this stuff but I like to share what goes on nonetheless. I am a foolishly optimistic person but I feel the need to remind people of this so no one worries about my state of mind.

So, back to my story....I was reluctant to buy a swing set because we had an only child who just happened to have terminal cancer. The thought of a gigantic swing set as some sort of half assed memorial/reminder/kick in the gut staring at me....empty.....every time I went into my backyard was a bit too much to swallow. I have 'what if' thoughts from time to time and they are manageable since Will is so fantastic. However...the idea of a gargantuan swing set mocking me from the backyard was too much to take. After Evelyn arrived I decided to stop depriving Will because of my childish misgivings...so tomorrow is going to be a special day for Will. The further away from the "your son is incurable' speech we get the more I stop holding back on living.

Regardless of how things turn out I'll look at that swing set and remember the smile that is going to be on Will's face tomorrow, the bumps and bruises my kids get from playing on it, and happy memories of living life as a family instead of as hostages to a dad's frustrated mind.

It is time to shake off any self imposed shackles and start following Will's lead as it comes to living life.

The Green Mountain State

Click Here to see a news story about the work being done in Vermont. This is where Will is enrolled in the biology study and where good things are happening. This is a place that gives hope to kids like Will. This is also a place that many families can turn to when they have run out of options elsewhere.

There is a time when your hospital will tell you it is time to give up, time to go to hospice, time to 'die with dignity'. That is not an option or a choice that every family wants to make and the fact that there is a place willing to offer reasonable treatment options for these families is an amazing thing.

Not everyone will choose this option and not everyone should.

But the fact that it is available for those who have made this choice is just one of the things to make this place special. We are talking about a hospital and a doctor who have chosen to make a commitment to an impossibly underserved subset of patients.

It is a difficult yet wonderful commitment they are making.

When you make the decision to commit your life to treating a group of patients that are statistically all supposed to die in an effort to change that fact is no small thing.

When you make that emotional connection to the families and these kids and they look to you as the last thing standing between life and death for their child that is something you simply DO NOT leave at the office when you go home for the weekend. That sacrifice, giving enormous hope to countless families, is something that I am unable to wrap my brain around. I can't stand the heartache from 'seeing' all these kids dying that I only read about.

And it is not as if I chose this life.

To make the life decision to treat these children and take the intense loss and heartache home with you while trying everything possible to save them is utterly remarkable.

This is why volunteering as much time as I can spare toward fundraising is so important to me. There is more that can be done for these kids, however, there are just too few institutions, doctors, and dollars dedicated to this patient population. Trying anything I can do to get more money into their hands is just about the most important thing I can do with my time outside of spending it with my family.

My man Max

I know it is strange but as many of you can attest it IS possible to fall in love with a kid simply be reading about him and his journey in this battle. I have heard this from many of you and I know it to be true because it happens to me all the time as well.

I have been fortunate enough to actually meet a few of these kids and their families and Max, and his family, just happen to be people that I care a lot about. There is a new web page documenting Max's journey via the pictures of a wonderful photographer along with comments from both the photographer Deb and Max's parents.

This is an extraordinarily powerful thing.

This is the equivalent of bringing a gun to a knife fight as it relates to the emotional resonance and impact these photos can have when compared to the standard parental photos.

Why?

Because the most intense moments in this journey are not times where you stop and say "hold on honey while I go get the camera". Because of this, those moments are rarely captured, seen, or shared so by Deb's participation you will be privy to a lot of moments that otherwise don't see the light of day.

I think that this is a very brave and powerful step by all involved especially for Deb as he has just decided to toss her heart right into the center of the ring. She has been reading Max's website too, so it is easy to understand why she was willing to join the fray if his life has had the same impact on her as it has on me.

The new page is called "Mashed Potatoes for Breakfast".

Grooming a pill popper

Dina was giving Evelyn a bath in the sink this morning and we truly are blessed with exceptional children. She is such a great baby. We noticed last night that teeth 7 & 8 are starting to show up and she is just 7 months today. At this rate she'll be eating steak in two months.

I have spent a lot of time pondering an email that Spencer's dad had posted to the neuroblastoma parent email list. You can see that email on Max's website HERE. I'm still uncertain of it's impact upon me but I feel that it will have a profound change upon how I live my life going forward....once I sort out just how I want to do it. I'm unhappy with the current balance in my life and this was a great reminder of how important getting that balance 'right' truly is. Spencer was an extraordinary boy.

Will finished up his chemo today and we were both (Dina and I...not Will & I) pleasantly surprised at how this round of treatment went. "Our" oncologist had one other suggestion that he felt 'may' have contributed to some of Will's prior issues that may have been 'routine' related versus drug related so we tried to eliminate those issues. We'll most likely do another cycle and then Will would get scans in mid-June.

Will has been exhibiting his quest for independence and this is helping a lot as it relates to the fact that he has to take a lot of drugs. He started asking to help 'push' the syringe on his meds and has progressed to the point where now I give him the syringe (today with 12.5ml of zofran) and he sticks the syringe in his mouth and pushes in the plunger.

I'm sure there a plenty of parents out there who secretly push their kids to excel at some unusual task for their age for various reasons. Perhaps they are competing with their neighbors kids, or they want little Johnny to appear to be the smartest 2 year old on earth, or maybe they just love their kids and want to give them every opportunity to succeed. In any event I have been secretly working on a skill with Will and I'm very proud of his progress. The skill we have been working on?

The art of swallowing a pill.

While it's not exactly reading a book or conducting a stuffed animal orchestra it is important in our world.

Will has been taking countless medications for the past 3 years and all his medication has been oral liquid or via IV. While he currently does not have an issue with any of his current oral meds (most likely due to the fact that he probably has no taste buds) there are treatment options that are pill only. It has been my goal to get him to be an Olympic quality pill swallower so that his next treatment option will not be restricted to clinical trials that don't require pills.

To do this I have started by buying a bottle of Motrin Jr. pills that are fairly small. While on ABT he takes tylenol in the morning and at night to prevent any neuropathy related pain. I decided to replace his liquid or meltaway tylenol with two of these pills in the morning and two at night. The first time I gave him one he promptly began to chew the pill....not the most auspicious of beginnings.....however we kept at.

My first attempt was to engage the 'cannonball' approach to pill taking. I would have Will pop in a pill and then start shouting Cannonball as Will would pick up his milk and begin chugging it to launch the pills into his belly like cannoball.

This was going pretty well.

Will then stepped it up to a whole new level one day by simply tossing a pill in his mouth and dry swallowing it. Perhaps he was growing tired of my cannonball antics.

My reaction was completely over the top...and bordered on insanity....I acted as compeltely shocked and astonished as if a UFO had landed in our backyard. I actually employed the "there is NO way you did that!!!" approach. I basically started calling him a liar and demanded to look under his tonque. I told him to stop using his fancy magic tricks and to give me the pill because there was NO way on Gods green earth that any 3 year old in recorded human history could have possibly swallowed a pill.

Tell a 3 year old he can't do something, especially a determined one, and you simply know that it is going to get done.

So this morning before his breakfast I brought out a paper plate with his zofran syringe, multivitamin, and motrin. He picked up the two motrin off his plate popped them in his mouth and dry swallowed them both. I of course carried on, gave him a high five, and basically told him how amazed I was that he was doing things like a really big kid and at this rate he'd be driving a car pretty soon. He thought that was funny. Now I need to identify a bigger pill to start practicing on in the event one of these trials comes along with those giant horse pills that even us adults have a hard time gagging down. Perhaps I'll start a non-profit where we can have a Pediatric Cancer Olympics where the kids can compete in such events as pill swallowing, self injection, how to pause an infusion pump, who can flush their broviac line the fastest, and projectile vomiting into a bucket.

These are all thing that, while not playing the piano, are skills and talents that are beyond these kids years and truly reflect just how normal our kids are even though they are forced to grow up in a very abnormal world. It's kind of hard to brag on your son at the playground about how incredible it is that your 2 year old wakes up at night and pukes into a bucket...there is no quantifying what an incredible thing that is... (So take THAT all of you preschool aged pilots, musicians, scientist, astronauts, and college grads.....Cancer kids kick your butt!)

Will is on his way to clinic right now to drop off medicine and get checked out by his doctor. We are going to try and do labs tomorrow afternoon with VNA instead of

Cate

Here is Will and his buddy Cate on New Year's eve about five months ago. I've been great friends with Cate's dad for about 20 years (good GOD) as we grew up about 2 miles apart and went to school together. We were also roommates in college and his wife Sue is a great friend as well. They have the most wonderful kids Cate & Mikey and they live in Milton and are about five miles away from our house.

Cate had to have a brain MRI last Friday to rule out any structural issues and/or a tumor as the cause for a recent diagnosis of diabetes insipidus. They went to Children's in Boston on Friday and a quick scan turned into a long one and unbelievably they received the news that a mass was found in their daughters brain.

The full body scan has shown no other masses outside of this 5-7mm tumor near her pituitary gland. She has started medication to replace the hormone that her gland should be releasing that tells her kidneys to retain water instead of just letting it pass right through. She will need to have a lumbar puncture to confirm the doctors assumption about the tumor type (germinoma). Until that is done and a definitive diagnosis is made they are stuck in the indescribable hell of not knowing what it is; not knowing what the treatment will be; not knowing what the survival rates are; not knowing what the most likely impact will be; and basically going through hell on earth until you finally have a plan in place.

I am absolutely devastated for my friends while also unable to shake this feeling of disbelief.

I don't have a lot of friends. How is it possible that one of my friends; one of Will's buddies; could also be diagnosed with cancer? Cate also has a cousin who was treated at Dana Farber for Leukemia (we used to see her in clinic).

About 12,000 kids a year get cancer in the entire country. I simply can't get over the fact that my friends daughter could also have cancer...I just don't understand.

I was so scared and confused at diagnosis and I can remember having our meeting where we were told:

-This is what it is
-Here is what we are going to do

We walked out of that meeting and I felt 300 pounds lighter and literally floated down the hallway. I am hoping my friends get that relief soon and get a plan in place that effectively removes this tumor and does no harm to their darling daughter Cate.

I can't believe it's not butter

Thirty three percent of the days for the past year Will has been taking ABT-751. Unlike his other harsh prior treatments his blood work looks fabulous ever day, his hair did not fall out, and he doesn't vomit uncontrollably or have moth sores. So exactly how can you tell the difference?

Any time Will runs out of the kitchen holding a bottle of "I Can't Believe it's not Butter!" and is spraying it directly into his mouth as it if it were some spray to soothe a sore throat you would have a pretty good idea it must be chemo time.

Will is getting a haircut at Hilaire's today after he returns from his "Adventures with Yoga Kim". Nana Ginny came up today to watch Evelyn so Dina could go off to the doctors and sadly I am still home from work sick. I'm better than I was but still have not fully recovered.

I was so very sad to hear that Spencer was taken by NB today.

No dogs, no seizures

Will always sleeps with his door open but he saw something on tv (max and ruby?) that involved a "No girls allowed" sign so Will demanded this sign on his door. He then demanded that his door be closed. He started his chemo and we are holding our breath. I couldn't tell you how he did this weekend as I have been missing in action until about 3 hours ago.

I woke up at 2 am on Thursday night and I wasn't breathing very well. I quickly sat up to gather myself when I further realized that my jaw was shivering uncontrollably. Dina woke up and it was at this point I realized that both of my legs had been uncontrollably spasming. This spasm then spread to my arms, shoulders, and basically my whole body. It was quite an odd sensation. I sat there trying to determine if I was sick, had somehow suffered hypothermia in my 68 degree bedroom, of if I needed to call 911.

Dina helped me get down stairs and after wrapping up in a blanket the shivers went away and the spasms slowed down and finally stopped. I was awake the whole time but didn't quite know what to make of it. I never had a temperature.

By noon on Friday after calling my doctor and hearing the nurse say "seizure activity" I became alarmed enough to call the one medical professional I could trust: my son's oncologist.

For those of you that have not had the joy of establishing a family friendship with your pediatric oncologist let me just say that it is really nice to have his cell phone, work phone, pager, home phone, email, and wife's cell phone in your address book when something medically goes wrong....be it with his real patient "Will" or his extended patient network "me". Will's doc spends half his time acting as my shrink...so I dont think he was surprised to hear me asking him about my episode.

He asked some questions and quickly deduced that I had not had a seizure. His thought was that I awoke during a sleep transition. This made me feel better.

So I went to my doc a few hours later who thought that I did have a seizure. He called the neurologist on call to run it by him and, lo an behold, the neurologist stated precisely what my son's oncologist said! So I'll see if there is any way that I can get a pediatric oncologist to take me on as a primary care doctor. In any event, to be safe they did in fact want me to go in for a brain MRI and EEG next week. Good stuff. Getting a scan is so much more fun that sitting outside waiting for one to be performed on someone else since you get to wear a really cool johnnie.

So I got home from the doctor (with no fever) took 2 tylenol and went to bed only to wake up a 2am with a temp of 102 degrees. So, I think I'll be canceling that MRI next week as the cause for my episode now seems more apparent.

I'd like to think from my symptoms it was food poisoning (I'll spare you the data I compiled in order to reach that conclusion) but there has been a bug going around that I just heard about. I hope it was food poisoning and that my hand washing and isolation will spare my family from what was a very unpleasant weekend. My fever broke today so I hope to be a useful member of this household soon. I owe a bunch of people calls and emails and will get back to you this week

Fly a kite

This is how Will flies a kite...he runs around the yard towing it behind him. I don't discourage this as it is good exercise but some day when he figures out what I've been up to I'll be sure and catch an earful...deservedly so.

Will went to clinic today, got checked out, picked up his chemo, and then stopped by my office with Dina for a visit. Labs below:

WBC 9.3
HGB 11.7
HCT 32.2
PLT 213
AST 37
ALT 22
LDH 275

In regards to my prior post...for those of you that want to see what is going on and how you can help you can visit www.FriendsOfWill.com instead of just emailing Melissa. There are updates on upcoming meetings, fundraisers, what is needed, and what is going on. Melissa 'owns' this page so she'll be putting stuff up there as needed that I'll link to from here.

Presidential worries

This photo scares me...it looks like a monster. Will went to a birthday party on Friday after school for one of his preschool buddies. They obviously had a face painter (and also did finger painting) and Will requested "a LION..ROAR!!" so that is what he got. I did not drop Will off at the party but I picked him up and it took me five minutes to spot him in the crowd since I didn't realize his face would be covered in paint. I never realized how coloring your nose black could obscure your parents ability to employ facial recognition to identify you in a group of kids...I'll have to remember this the next time I am hiding out from the law at a face painting party. We asked him to growl for the camera...I think it is an effectively disturbing roar.

I was angry to learn that our future President, Erin Buenger, has to change treatment as her tumor has outsmarted her current treatment plan. This is always an extraordinarly stressful time so feel free to visit Erin's page and lend her and her family your supportive comments....you can tell your friends about this when she is running the free world.

Will had his labs drawn by VNA today and was full of energy. He starts cycle 17 of this chemo tomorrow and we are somewhere around a 6 or 7 out of 10 on the anxiety scale about what is going to happen. We fear that, much like Erin's parents, we will soon be forced to select a new treatment plan. Will's behavior over the next week is going to make the decision for us very easy as it relates to staying on ABT or going off.

What will be difficult is figuring out what to do next if we have to leave study. Either way, we'll figure it out as always, however one way will be easy... and the other way will be stressful, exhuasting, and filled with anxiety and uncertainty.

I'll try and highlight what is going on in an attmept to let you understand why this is so difficult. Try to imagine the stress and worry that would take place in your house under the following circumstances. Your wife stays at home to raise your children and you have a great job with benefits, tons of vacation time, and great pay. Then one day you are unexpectedly laid off from your job during a recession and you have just 3 weeks (length of a chemo cycle) to decide what your next job will be.

This would be stressful, you and your wife would have a lot of late nights talking, you'd be scouring the want ads, reaching out to your contacts, putting your resume everywhere, trying to get interviews, staying up too late, maybe drinking too much.

It would be a tough time.

Now....imagine all of that with the added wrinkle that if you chose poorly for your next job the consequences wouldn't just be an unhappy work situation but that your child would die a painful death.

Once you make a decision for new treatment it is ok because you are commited to it.

You have to move on.

But once you pass the curative stage of treatment options, where we have been living, you are long past getting definitive answers from anyone wearing a white jacket and stethoscope...simply because there aren't any.

Cowboy Spirit

Here is my beautiful wife and daughter out in our backyard on Mother’s day. As I was getting ready for work today Dina called upstairs to tell me that Ev was standing and holding onto something on her own. It is simply a matter of time until Will’s world is turned upside down as Evelyn was rolling towards Molly last night to get her tennis ball.

Just a few updates about things going on that I wanted to point out.

One of the mom’s from preschool, Chrisi, makes handcrafted jewelry and makes a number of ‘Awareness’ bracelets and she was kind enough to make a neuroblastoma awareness bracelet and she donates a portion of the proceeds to MagicWater.org. Thus far her donations have totaled $340. Thank you to Chrisi for doing this and for all of you that have purchased a bracelet (Dina’s pictured below).



Also, the “Friends of Will Lacey” have already started organizing for their next fundraiser that will take place in January. If you would like to help you can contact Melissa Kipp via email friendsofWillLacey@hotmail.com.

A special thank you to my cousin Daryl and her wonderful daughter Sydney who held a yard sale so that she could donate the proceeds to MagicWater. It is remarkable how every single one of my cousins children have always been just so wonderful to Will.

And finally I wanted to point out a fundraiser that is taking place next month that is going to be a very family friendly event. This event is taking place in Marshfield Massachusetts at the fairgrounds and being run by www.CowboySpirit.org which is a Boston based, and volunteer led, charity dedicated to raising money for children’s cancer care and research. This event is called the “New England Wild West Fest” and the money they raise supports kids cancer at Dana Farber, Children’s Hospital, St. Judes, and I’m incredibly happy to say it also supports The MagicWater Project via “Operation Trail Dust”.

It is a family friendly event with stick horse races for the kids, a calf scramble, chili cook off, hay rides, barrel racing, horseshoe tournament, a horse six shooter demonstration, a live professional rodeo performance each night, and much more. Here is a video from their website.



About their choice to support childhood cancer

"To a certain extent it is because we believe that the sports of rodeo and bullriding reach their highest calling when put forth in the name of a charitable cause. They are a unique legacy of a great nation - one with a generous and courageous heart. But there is more to it than that.
The true cowboy spirit is about being brave enough to face a foe that is much greater than any man. It's about being courageous enough to fight through the physical pain that comes with facing that foe time after time. It's about having the strength of mind and spirit to never quit, to never give up, no matter how difficult the struggle or bleak the odds. This is how the cowboy spirit is related to the fight against childhood cancer.
The original inspiration for the work of the Foundation came from the battle fought and won by an exceedingly courageous young man named Ian Emery and his family. We remain humbled by, and in awe of, the strength and courage that sustained them through their long struggle.
It has been said that there are no atheists in a rodeo arena. So too can that most certainly be said about any pediatric oncology ward. Showing a willingness to reach beyond themselves and their own abilities and limitations, seeking out a higher power, and finding the added inner strength to never give up the fight against a fearsome and powerful foe that they do not understand nor know that they can conquer is what children who face this deadly disease do each and every day during their struggle. In that, there is no better example of what we call the Spirit of the American Cowboy."
-www.cowboyspirit.org

Feeling fortunate

Dina's plan for mother’s day was impossibly simple: sleep in a little later than usual and then spend the day with her family as seen above in this picture from yesterday. Everything went according to plan, except of course, the sleep.

This was because Will and I had been talking about making breakfast in bed for Dina all week and he was so excited by this prospect that he woke up early and we were in Dina's room at about 6:45am yesterday with her breakfast! Will was hysterical because he kept adding things to her 'tray' (a cookie sheet). These things included the list below, along with what Will said, that he added:

-Cottage cheese "Momma loves cottage cheese!"
-Yogurt "she'll be so surprised!"
-Water "she's thirsty"
-Orange juice "mmm...juice!"
-Coffee "should we make momma coffee or go to store...hmmm....make it"
-Strawberries "I love strawberry"

Will then climbed into bed and ate about half of Dina's breakfast, which oddly, consisted of some of Will’s favorite things.

I couldn't help but think of how lucky we are to be together as a family and at home. I was sadly reminded of how many mothers had to experience mother’s day yesterday for the first time after having lost a child to neuroblastoma since last year and it was a sobering reminder of how unforgiving this disease is. I know so many others who spend yesterday inpatient with their children. We are very fortunate.

Will went off to school today and we are fast approaching (May 30th) the last day of school for Will. It is absolutely amazing that the school year has so quickly passed when I can remember at this time last year writing a post about how terrified I was that Will may not have survived long enough to even enroll in preschool in September and here we are a year later and finishing a year of school.

I am so very thankful to have such a wonderful family.

And no, Evelyn barely has any hair but Will did not have any hair really when he started treatment and he was roughly the same age as Evelyn now so I guess our kids are of the slow hair growth variety.

Staggering

I constantly see, hear, and read bad news as it relates to neuroblastoma patients but today I am so very happy to share good news. That is right, occasionally there actually is good news to report in the neuroblastoma world.

Erik received great scans last week showing that his skeletal disease has resolved. They are awaiting the bone marrow results but his scans are clean which is truly remarkable.

This is remarkable because Erik was diagnosed with stage IV high risk disease in 1991 (same surgeon as Will) and went into remission for 13 years. He was diagnosed with recurrent neuroblastoma at 20 years old in his bone and marrow and got back into remission (AGAIN!) from a year before relapsing again in his bone and bone marrow in November of 2006 at 21 years of age. Just take a look at his treatment history below. I

Staggering is the only word I can think of when reading his treatment history.

FRONTLINE TREATMENT (1991-1992)
for high-risk neuroblastoma at Dana Farber and Boston Children's (right adrenal primary, bone+bone marrow packed, MYCN non-amp, 1p del, poor histology, diploid DNA):
9 rounds chemo, surgery, 16 doses radiation to abdomen, autologous bone marrow transplant, no retinoids or antibodies

TREATMENT FOR FIRST RELAPSE (2005-2006):
two rounds dox/vin/cyclo and four rounds topo/cyclo at MeritCare Fargo, ND and U of MN.
Erik was the world's first patient to undergo a stem cell transplant with head-to-toe total marrow irradiation conditioning (included busulfan, melphalan, and thiotepa) at University of Minnesota-Fairview in Minneapolis (Nov 2005).
He was on high-dose 13-cis-retinoic acid (Accutane) for 6 months.

He was again in remission for one year

FOR SECOND RELAPSE (2006-2008):
Nov and Dec 2006: two courses of hu14.18-IL2 antibody trial (Phase II), but progressed with skull, spine, pelvis, and femur involvement, and bone marrow biopsy showed 70% NB
Jan 15, 2007: began IV irinotecan (2 weeks) + oral temozolomide (1 week) and had a miraculous response after two courses!!!
Feb 20 & 21, 2007: scans dramatically improved, bone marrow biopsies clear!!!
March 2007: one more round irino+temo
April 26, 2007: scans were again significantly improved, only two light spots remain in pelvis, two light spots in spine, faint uptake in femurs, and small amount in marrow
Mar 23 to Aug 15, 2007: no treatment
July 31, 2007: scans showed five spots in spine, one spot in pelvis, femurs clear, and biopsy (right side) positive
Aug 15, 2007:started new oral formulation of fenretinide (Phase I trial); completed 2 rounds
Sept 24, 2007: scans show more progression in skeletal system, especially entire spine
Oct 2007: two rounds of irino+temo with Celebrex
Nov 2007: great improvement in scans again (few spots in spine, pelvis, femur)
Dec 2007 and Jan 2008: two more rounds of irino + temo with Celebrex

Jan 31 & Feb 1, 2008: scans "borderline normal" with faint uptake remaining in marrow, and bone marrow biopsies clear!!! (first clear biopsies in 18 months)

Mar & April 2008: two more rounds of irino + temo with Celebrex; also gallbladder surgery (2/21) and another hospitalization (3/29 to 4/1) for fever

Guitar shades

Will enjoys playing with his many guitars and also sports some red guitar rain boots. Therefore, when Nana Daryl spotted these guitar sunglasses while her and Papa Ed where in Florida it made perfect sense that she must buy them for Will.

They look even better in real life than this photo could ever capture…..but they aren’t really the best shades for shagging flies or swinging the bat out in the street as seen here. He was wearing his red guitar boots in the picture but sadly we didn’t capture that image.

Happy mother’s day to all you mom’s out there and remember to give everyone an extra hug, an extra kiss, and don’t forget to tell everyone important in your life how you feel about them the next time you see them

Type A blood donors

Below is an email I just received from Children's Hospital Boston and their blood donor center. I'm type A so I'm going to go donate as I am now again eligible to do so. If you can help that would be great.

Information about donating at Children's Boston is HERE.

========================================

We really need your help!!!!!!!
During the next few weeks, May 5 – May 20, we are in GREAT need of your blood type.

If you are able to come to Children’s to donate for our many upcoming surgical patients we would really appreciate it!

One of these patients needs 50 units of blood. That is one patient!

Our hours are Monday-Thursday 9-7 and Friday from 7-4. Please call 617-355-6677 for an appointment. If you decide to walk-in, please be sure to eat a meal beforehand and have a valid photo ID.

Parking is free for those who donate blood.

Your blood donation is an important gift that can help up to four patients.

Thank you for your donation(s) in the past, and I hope we will see you soon!

Annie Mulvihill
Blood Donor Recruitment Associate
anne.mulvihill@childrens.harvard.edu
(617) 355-6677

Curing the incurable.....today

I find myself reading a lot of research papers as it relates to cancer and, more specifically, to neuroblastoma and sometimes I wonder why I even bother.

I have a better understanding of some things, a clearer picture of what may be relevant, but at the end of the day it's the equivalent of reading a schematic of a nuclear power plant. I'm not more or less qualified to work at a power plant for having read the schematic...in fact I'm probably less qualified since in many cases "a TINY bit of knowledge" can be more dangerous than complete ignorance.

Where am I going with this?

Well, the reason for this is the fact that I just read this article and their research has drawn the following conclusion:

A common genetic variation at chromosome band 6p22 is associated with susceptibility to neuroblastoma.

This is a very exciting and important discovery but the further into this world of neuroblastoma I travel, the more kids whose stories I read are dying or have progressed, I find myself becoming more frustrated.

It is great that doctors are doing research into what may cause neuroblastoma but I don't really care what causes it at this point, I just want a cure for the kids dying today.

Quite frankly, how are we any closer to finding a cure for the kid’s battling this disease today?

If you look at a person’s karyotype you will see, in a 'healthy' person, 22 evenly paired chromosomes (each pair numbered 1 -22) along with the sex chromosomes….so 22 evenly paired chromosomes and XX for a female or XY for a male. (That is Will's karyotype in the picture above)

In the case of Down syndrome if you look at the karyotype you'll notice a problem with the 21st pair of chromosomes because instead of 2 evenly paired chromosomes you'll instead find 3 chromosomes and this is what causes Down syndrome. Normally when 3 chromosomes are found in one of these pairings the result is a lost pregnancy but since the 21st chromosome is so small (see the picture) it is possible to have a full term pregnancy that, while resulting in Down syndrome, does not always encounter the kinds of catastrophic problems you’d have with another chromosome pair. Down syndrome was described in 1866 and it was identified as chromosome 21 trisomy in 1959.

Why am I talking about Down syndrome? Because the fact that we know there is a very specific genetic cause for trisomy 21 does not have us any closer to a cure for it.

It is great that we now know what may be part of the cause for high risk neuroblastoma but I just can't get that excited about it as I'd like to because it isn't clinically relevant in any time horizon to save Will's life.

I'd rather be spending time with my family than working to raise money for research. I'd rather have you all over for dinner than continually haunt you for your money.

There are only so many researchers and clinicians interested in neuroblastoma. On top of that fact there are only so many dollars that are spent on this 'orphan disease'. The fact that so many dollars and research hours are focused on finding the cause of a disease versus a cure for it is something that I find frustrating now that we are on the edge of the cliff. This is something that I did not fully appreciate before relapse and even before we were given the 'you son is going to die' speech.

Back before relapse, and even "the speech", I lived in a world of denial to the odds. I'd think "sure... kids relapse, and the odds look terrible, but that won't happen to me. I'm happy for any research being done and maybe in 5-10 years time we'll be a few steps closer to a cure but my kid will be in remission and this will all be a sad memory of a difficult chapter in our happy lives."

You simply can’t, as much as you think you might, have an appreciation for the immediacy of the situation you are faced with when you exhaust all known curative options. It is impossible to stress how different your outlook and opinions on treatment changes each time you are one step closer to deciding between cremation or burial of your child.

I know long term that finding a cause can lead to a cure. But once again I go back to Down Syndrome...has knowing the cause all of these years led to a cure? It was labeled trisomy 21 in 1959. How has knowing the genetic cause of this problem for nearly 50 years helped us to figure it out? I'm not upset at these researchers for they are simply doing work that they are passionate about and it is important. They must do this to move forward and discover more about this disease but since I'm sitting here precariously balanced on the edge of the cliff I'd love to see some clinical breakthroughs that will start saving lives.

I'm just feeling powerless.

It is just so hard to comprehend the reality of truly how little is being done clinically to save the lives of refractory/multiple relapsed kids dying each day. That is why I feel it is so important to do anything I can to help give to the the few clinicians and researchers who share the passion that we as parents have to 'Cure the the incurable'.

Right now I don't need to know what caused Will to develop a deadly incurable tumor; I need someone to save Will's life.

I need someone to ‘solve the problem’ instead of debating how it is we got here.

It doesn’t matter.

We are here so let’s stop worrying about how we got here and deal with the problem at hand.

Ev

I just wanted to pass on this picture from Dina's cell phone today. Wednesday is 'yoga day' for Will as Kim Taylor picks Will up at 9am and he goes to yoga class with his new buddy James. After class yoga Kim takes Will and he plays with the "Rust kids" that Kim takes care of. He has a great time and is probably at the playground right now.

Last night we played a little baseball out back and I am very impressed with his ability to hit the ball. I started pitching overhand from about 20 feet out and as long as I put the ball at shoulder level...he hits it! It is actually a lot of fun.

Why complain?

I am so very happy to learn Max has finally been able to get his pain under control so that he can get home. There is a wonderful post HERE describing, through his teachers eyes, how courageous Max is.

It is also a great reminder on how to live.

Infants

Evelyn had a long wait to see her doctor yesterday at the pediatrician due to an emergency but Will was there to keep her entertained and to keep her company. We were both very happy with Will's patience and helpfulness as he had to wait a long time and usually that isn't something he does very well with so it was a nice development for him.

Evelyn weighed in at 17lbs 7oz (71%) and was 28 inches long (97%). Dina checked to see what Will was at 6 months and he was over 20 pounds but was only 1/4 of an inch longer at 28.25 inches long. Before the appointment Will was running around the house in his big boy underwear as he has been spending a bit too much time without clothes on lately. Dina was trying to get him dressed in an effort to get out of the door on time for their appointment and Will simply would not cooperate. So Dina starting joking with Will by saying that he couldn't go outside without any clothes on because the police would come and get him!!

Fast forward to Evelyn's appointment (for the record...Will is wearing clothes)and their doctor starts to take off Evelyn's clothes so that she can check on her and Will says to the doctor "Put Evelyn's clothes back on so that the police don't get her!".

In two weeks time Evelyn is going to be the same age that Will was when he was diagnosed with cancer...3 days shy of 7 months old.

It has been a long 3+ years for our family since Will was that age and as time passes you can tend to forget (repress?) certain details or facts that are just too hard to keep in the front of your mind. But as I look at Evelyn I simply can not conceive of the fact that when Will was this size/age we starting giving him chemotherapy.

As far as I know there isn't a more toxic or deadly FDA approved drug in the world that you can give a human being outside of chemotherapy yet we started pouring this into our infant. And here is Evelyn at the same age and I'm hesitant to give her Tylenol for her teething other than at bedtime. It is remarkable what a difference the word ‘cancer’ has on your tolerance for what drugs you’ll allow or worry about your infant ingesting.

Speaking of which, poor Evelyn did get Tylenol at bedtime last night but it didn't help too much as she has had back to back sleepless nights. She doesn't seem too bad during the day but hopefully she'll be feeling better (and we'll all be sleeping better) very soon. One interesting thing is that since Saturday night Will has slept through the night without getting up, so Evelyn has apparently decided to assume those duties on his behalf and he feels that he can sleep since Ev is on the job.

Put that clown in a cage

Will had a very interesting weekend as he received a last minute invite to the circus on Saturday. Will and Dina drove down to RI and went to the Ringling Brothers circus with his cousins Emily and Michael, their parents, and Nana Ginny. Will apparently enjoyed the motorcycles, animals, and the popcorn most of all and after dinner he decided that he would like to do a sleepover after Emily asked him to stay. It was a fun and action packed day for him.

Apparently there was a clown who was being fresh and kept stealing the ringmaster’s hat. He kept doing it over and over again and finally Will leaned to Dina and in a very serious tone said: “I don’t like that clown. I wish they’d just stick him in a cage”.

That of course cracked me up. Will was back to school today and is currently on his way to the pediatrician with Evelyn for her checkup and shots. Poor Evelyn was up all last night as she has four teeth (top front four) erupting through her gums and is understandably very uncomfortable. I’m very curious to see her height/weight at six months during today’s visit as she seems very long to me.

Will has continued to act like himself and seems to be feeling well so we are going to give one more round of ABT a try and see what happens.

Big boy

Will loves the garbage truck and the garbage men so he was thrilled that this truck was around on Saturday for him to climb on. Today Will left the house for the first time ever in his life without either a diaper or pull up under his clothes. Instead, he walked out of the house with big boy underwear. I’m sure his teachers at school are delighted with this new development.

In a much less exciting first.....Max Mikulak took his first ambulance ride ever yesterday.

Max has been in the hospital this week in an attempt to get the severe pain he is enduring under control via the combined administration of IV narcotics and firing radiation at his thighs in an attempt to reduce the tumor burden that is creating such agony for him. He had started a new treatment plan of irinotecan/temodar but since that apparently did not work he has moved on to Gemzar/Velcade and radiation this week. Max, his siblings, and his wonderful parents Andy and Melissa could certainly use all the support they can get. Feel free to visit Max’s site and leave a comment to let them know you are thinking of their family right now, it can be a very powerful thing. I know it has been for me.

Will’s labs from Wednesday.
WBC 7.6
HGB 11.4
CRT 31.2
PLT 209
AST 37
ALT 24
LDH 245 (was 282 a week ago)

Will continues to be himself and that (obviously) is a good thing. We'll figure out what to do next sometime next week after monitoring his behavior and sleep patterns.

Flip the switch

It seemed rather clear on Tuesday that Will had been suffering from a trial ending toxicity over the weekend. We are going to finish out this current cycle of ABT, his 16th, and then watch him next week. Depending on how things go this week and next we will have to decide if we need to scrap this current treatment plan or if one more cycle is in order to determine if his behavior is a drug toxicity or some aberration unrelated to ABT.

When he woke up yesterday (Wed) morning it was like a switch had been flipped and our son came back (and he started actually sleeping). Since we are mid-cycle I don't know what to make of it.

Yesterday Will said to take off Evelyn's clothes to make it easier for Dina to put her back in her belly. He's still not a huge fan of Evelyn but yesterday we did play hide and seek together. Will is TERRIBLE at this game. Absolutely TERRIBLE.

Evelyn and I counted and Will would announce out loud "I'm going to hide under the table..." and once we started hunting for him and I'd talk in my "Evelyn voice" saying "I'm going to FIND you!"

Will would start giggling and would say "No you won't!" thus giving away his hiding spot.

I also found as the game went on Evelyn's voice started to sound like the wicked witch of the west and her laughter was more of a cackle...Eventually all three of us hid while waiting for momma to come downstairs. I made Will guess what color shoes Dina would be wearing he said "YELLOW!" and I started to laugh and said I'd give him 20 bucks if Dina came downstairs with yellow shoes on her feet. I won the bet and kept my money.

Evelyn has what appears to be four teeth bursting through her upper gums right now to finally join the two lone sentries that have been standing guard on her lower gums for quite some time now. I don't imagine that can feel to good. I said to Will how fun it would be for Evelyn to grow up so that we could all play hide and seek together so that I wouldn't have to carry her. Will said that when she grew up she could play hide and seek and go to the hospital just like him. Hopefully it will not be from lead poisoning from sticking this painted wooden toy her in her mouth in the picture below.