Wednesday, September 2, 2009


one of my favorite pictures of all time, Will in his shirt - NEVER GIVE UP!!
Will and his gorgeous sisters Catherine and Evelyn

An introduction to the amazing Will Lacey and a bit of the journey he has been on over the last 5 years, from his blogspot

Will was diagnosed with Stage III (later found to be stage IV) intermediate risk Neuroblastoma at the age of 7 months at Children's Hospital in Boston in March of 2005. Initial outlook was very good and the trial that he was enrolled in (COG A3961)has a greater than 90% success rate. Will would receive either 4 or 8 rounds of intermediate dose outpatient chemotherapy based on this pathology followed by resection of his primary tumor in his chest/neck.

He received six rounds of chemo followed by surgery to remove the baseball sized tumor. The whole tumor could not be removed so a golf ball size chunk had to be left since it was interwoven in his brachial plexus (its removal would have severely damaged function in his left arm). This surgery was in August of 2005 just after his first birthday and followed by two more rounds of chemo to ensure that the remaining tumor was matured (no longer cancerous). Contrary to your common sense assumptions about tumors we were told that leaving this type of tumor (NB) in the body is not a bad thing, and not uncommon, since it tends to turn into 'benign' tissue, or die, with the help of chemo.

The first round of post treatment scans in February of 2006 indicated that the tumor was not mature as the doctors had hoped and new lesions appeared in the supraclavicular nodes and in the mammary chain. Relapsed/refractory Neuroblatoma treatment ensued.

Will had a second surgery to remove the new nodes and then went on to two rounds of Topo/Cyclo. Post Topo/Cyclo scans indicated stable disease so it was determined we had to go onto the high dose chemo path. Five rounds of high dose chemo and a stem cell collection took place with scans before the transplant phase to see if the chemo was working. It was determined that his tumor had grown very slightly at this point and Dana Farber in Boston deemed him incurable.

Will then went back on Topo/Cyclo for four more rounds since that kept his disease stable and could be given at home while we waited for a second opinion. Consulted with Sloan in NYC and Children's in Philly (CHOP) and decided on going to CHOP for MIBG therapy in January of 2007. The scans indicated stable disease so we did another round of MIBG at the end of March.

We then scanned again after another 8 weeks at the end of May 2007 and his diseases was still stable. He tolerated this treatment well, did not require a stem cell rescue, and the quality of life was very high.

To keep that quality of life we started ABT-751 on June 8th 2007. Just over a year later on June 26 2008 Will progressed after 18 cycles of ABT with a new 11mm pleural node.

After consulting with Dr. Sholler at the Vermont Cancer Center we decided to try their suggestion. This is a compassionate release protocol that involves a weekly IV push of vinblastine and daily rapamycin (rapamune). Each cycle lasts 28 days with the 4th week being a week 'off' of the vinblastine.In addition Will is also taking 100mg of Celebrex twice a day; is taking daily lovastatin, is taking bactrim; and is taking a stool softener for the constipation that can occur from vinblastine.

Will did this therapy for 10 cycles from July 15th 2008 until the end of cycle 10 in the first week of April 2009. He remained stable on this therapy and the minimal residual disease seen in his marrow no longer contains CD34 positive cells which was part of the goal of this treatment.

On Tuesday April 14th Will is started 2 cycles of Velcade and oral cytoxan. Will has not takencytoxan (or any alkylating agent) since December of 2006 but this is a much lower oral dose. Each cycle is 21 days and Will is took 100mg of cytoxan by mouth on Days 1-8 and he received 1.3mg/m2 of Velcade via IV push on Day 1 in Burlington VT and his 2nd and 3rd doses of Velcade on days 4 and 8 at home from Brockton VNA.

Will remained stable on this therapy and then begain the TPI-287 phase I study being conducted at the Universtity of Vermont. Will was the 4th patient on this study - patient 1 in cohort 2. For this study I created a seperate BLOG and SPREADSHEET to track his results, the side effects, and the quality of life. This study involves weekly infusions of TPI-287 in VT 3 out of every 4 weeks. After scans showed stable disease after 2 cycles Temodar was added in daily on days 1-5 starting at cycle 3 (maximum of 6 total cycles).

Cycle 3 of TPI-287 began on Friday July 31st 2009 and this was Will's 52nd cycle since diagnosis.

We met Will and his family through an online support group for neuroblastoma families, back in 2007. We have loved following Will and his family's journey and adventures and have prayed and encouraged this amazing family!

Will's Dad Pat has the most amazing way of writing and putting Wills journey into words - once you visit his blog you will be hooked! Will is blessed to have amazing parents in Pat and Dina and the most gorgeous little sisters Evelyn and Catherine who also keep us smiling and laughing with their antics!!

Will's family is involved in so many amazing projects to raise funds, through Friends of Will and Magic Water,to assist an incredible Dr Giselle Sholler who has dedicated herself to finding the cure for neuroblastoma - i believe that so many amazing discoveries and even cures will come from work like hers, and thats why its so important , to create awareness that will get people to provide funding for more research and ultimately save many many lives.

I urge you to go and become a Friend of Will on his blog and watch the video clip Pat has put together of the last 4 years of Wills fight against neuroblastoma.

Will has just turned 5 and his amazing spirit and love for life comes alive through his blog! Please join us in praying that Will continues to do so well and that he will be cured in the very near future!!!

Lots of love Will from " your friends in Africa"


MaryBeth in PA said...

I also follow Will's site, which is how I found Deqlan's story. Beautifully written and what an amazing tribute you are doing during Childhoood Cancer Awareness Month! I love reading your blog and feeling the positive, encouraging outlook that comes from your words and photographs.

Anonymous said...

To an amazing family, the Lacey's,

Through your blog we have come to know and love you, especially inimitable Will (what a character !!!), Evelyn (adorable) and the latest little lady Catherine (too cute). Pat and Dina you are both wonderful parents and you are as blessed to have Will has your son as he is to have you as parents.

Will has experienced so much in his 5 years and therefore it is our solemn prayer that a cure for neuroblastoma is found and confirmed in the very near future. The cure that cures Will !
You all, as a family, have a special place in our hearts.

God's richest blessings always.

Lots of love,

Aunty Bev Bourne in South Africa.
Nanna to Deqlan Higgins

Conrad, Megan and Our Precious Keaton said...

Will - you make me smile every single day when I log onto your blog! Your dad really knows how to write with such love, conviction, humour and integrity! We could not love you and your sisters more! Big hugs from your friends in africa! Megan and Keaton

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