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Friday, March 13, 2009 2:15 PM CDT

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
~Kahlil Gibran


Last Wednesday I dreamt of him.

He was laying on me, his back to my chest, as he often did. My hands were around his smooth soft Buddha belly. My fingers nimbly tracing the varying blue shaded veins that seemed to lie just beneath the surface of his translucent and creamy pale skin. His mid-section, although distended, was peaceful and calm. It was like viewing the earth from space; cloudy swirls of white amidst a bluish-green topography, like a map—a map that led to heaven.

My cheek was resting on the top of his head. With the slightest movement I could feel the prickly tickling of the tiny course hairs that had begun to emerge. Beautiful and bald, it felt like I was holding the most precious gift in the Universe and I was. My heart and his beating rhythmically, beating together.

“Who loves your face?” I could hear myself ask—something I asked him everyday for as long as I could remember. It was rhetorical and he knew it but I always got an answer, “you do.”

The realness, the vividness, and the comfort with which I dreamt, last Wednesday, was unparalleled since his death.

I awoke in the early dawn hours expecting him to be right next to me. As sad as it was when he was not, I have not felt this much relief and peace in months.

This past Wednesday, marks one week until his 10th Birthday. Last year, we were paralyzed from his death. This year we are giving much more thought to how we would like to honor our sweet boy.

Mike and I are sponsoring another Right Whale, from the New England Aquarium Rescue Project. During Harrison’s last summer, we took him Whale Watching off the coast of Boston. He fell in love with the sea life and sponsored Coral—a young male whale—whose progress we followed for months. Sadly, Coral was no longer on the list, so Mike and I picked Snowball—according to his bio—“Snowball got his name from a unique scar above his left lip that resembles a big white snowball. We do not know what caused this scar, but it does make him easy to identify, even from a distance. Snowball has been seen in habitats where only a few right whales are documented yearly, such as Jeffrey's Ledge off the coast of New Hampshire and in the waters off Long Island.”

It seemed fitting that we choose a whale who ventured where few whales do. That was so like our Harrison, he often ventured where few dared to go. I think he would approve. And we will follow Snowball with the same excitement and enthusiasm that Harrison followed Coral.

Next Wednesday, March 18th, our hero would be turning 10. We will be attending Mass at St. Mark Catholic Church at 9:00 am. We will all be wearing green (his favorite color). We will be gathering every Sunflower we can and lovingly place them where he lays. We will be dinning out for, of course, Japanese food and sipping non-alcoholic (smile) Pina Coladas and we will be eating chocolate cake with green icing. This is what we would be doing with him, so this is what we will do to honor him and celebrate his magnificent life.

Thank you for celebrating Harrison.
Gina and Mike

Saturday, February 14, 2009 11:07 AM CST

Hearts will never be practical until they can be made unbreakable
—The Wizard, The Wizard of Oz




The human heart, by textbook definition, is “the hollow, muscular organ in vertebrates that receives blood from the veins and pumps it into the arteries by regular, rhythmic contraction; the heart considered as an emotional center as mood or disposition, compassion, concern, affection, love and resolute courage."

But I am with the Wizard on this one, “hearts will never be practical until they can be made unbreakable.” When your heart is damaged medically they have procedures, operations and medications. There is often a remedy, for the medically disabled heart, but when its “emotional center” is wounded or even broken there is no repair, no relief, no topical anesthetic for the pain, and certainly no cure. My greatest love was only 8 years-old, when my heart was broken.

Harrison, like for most mothers and somewhat clichéd, was the love of my life. He was what I lived for even before I met him. When you carry a child your life is no longer your own; what you eat, you drink and you breathe is not for yourself but for your unborn baby. Your body is no longer your own. It is the house where your baby resides and when he’s born your heart is the house where his love resides.

He is my heart, I do carry him there—the place where compassion, affection, courage and love all reside—most days it’s just not enough.

February 17, 2009, it will be one year. Our pain is extraordinary and this time will be even more difficult as our year, the year by which all things, events, and feelings are measured, comes to a close.

A Mass will be held for Harrison, on Tuesday (Feb. 17th) at 7:00 am at St. Mark Catholic Church in Huntersville, NC.

Our friends and family are welcome to join us.

Gina

Thursday, January 15, 2009 2:32 PM CST

Let reality be reality
—fortune cookie


…the immortal words of my fortune cookie. Mike and I went for Asian food last night; Harrison was a big fan of Asian food and a proud believer in the power of the cookie. What were the cookie Gods thinking when that fateful cookie was assigned to me. Did the fortune cookie guy fail to realize how much reality actually stinks right now? Or was that the synchronistic perfection of the fortune cookie at work?

There is a mystical allure to the fortune cookie. As if an ancient Chinese elder, whose face is obstructed by the sliver beard so generously offered from his cheeks, sits piously on a mountain top surround by pillows of fog, pondering, meditating, concentrating on those three to five word phrases that we find stuffed into those artfully folded crispy confections know as “the fortune cookie.”

I remember both as a child and a young adult, then as parent— through the eyes of my child— the pre-anticipation of the cookie. Before you even begin the meal…before you even get to the restaurant, in the early inception stages of planning the evening…at the mere suggestion of Chinese food, you are immediately flushed with thoughts of “oh good, the meal that culminates with a fortune cookie.” You hungrily await the salad- sized plate that arrives at the meal’s end. That 6 inch plate adorned with the highly coveted cookie—often accompanied by the ever colorful and sweet orange slices that now pale in comparison to the omnipresent cookie. Everyone knows you must pick your own cookie, one must never be handed a cookie by another or the magic of the fortune is immediately diminished. Even those skeptics, the most suspicious of customers, those who do not believe in the power of the cookie are drawn, as if by an invisible magnetic force, to the plate, compelled to take one and maybe just maybe become fate’s temptress.

For years I allowed myself the privilege or fantasy of clinging to the hopes of the twenty- something fortunes Harrison collected over the years.

A journey must begin with a single step…
Your dream of happiness will soon come true…
Luck is coming your way…
If you continually give you will continually have…
Fortune cookie says your efforts are budding…

Bad judgment? Or eternal optimism? Is it the allure of the imagined ancient philosopher or the simple thrill of cracking the shellacked exterior of the cookie and releasing the gilded hope from within? Is it our inherit goodness that allows us, for a moment, to become susceptible to the lure of the whimsical cookie? Is it the promise that something greater than ourselves is at work, fostering assurance that there will be something better? Are we safer not to hope…to dream…to fantasize…should we just let reality be reality?

For Mike and me, although, this reality stinks; I can with certainty say that I, like Harrison, will always yield to the mystical power of the fortune cookie; preferring to indulge in the luxury that a wise man, at the top of a very magnificent mountain meant those miniature juicy tidbits of greatness for me and that fate guided the hand with which I picked my fortune.


Mike and I have been hanging in, the holidays were especially difficult. Thank you to everyone who participated in sending ornaments for Harrison’s tree-it was really lovely and held so many special memories.

For those of you that may be interested, Mass will be held for Harrison, on February 17th at St. Mark Catholic Church, in Huntersville at 7 am (this marks the one year anniversary of his death) and also on March 18th at 9 am (this would have been his 10th Birthday).

Thank you for continuing to check-in on us and for reading my updates.

With gratitude,
Gina

Tuesday, December 9, 2008 5:03 PM CST

Mom…it is the season of magic and miracles!
—Harrison [Christmas 2007]


It’s hard to believe it has been a full month since my last update. Then again so many things are hard to believe this year. I cannot tell you how difficult this update is to write during the holiday season, without Harrison by my side. Nothing seems the same, feels the same or smells the same without him—what was once such a cherished time of year is now an unwelcome intruder—my heart just wanting to shut the door on this unrecognizable trespasser.

I am trying to remember how much he loved all of this…the driving through the lavishly decorated neighborhoods with blinking lights and illuminated Santas, reindeer with bobbing heads and disco studded presents, wreaths dressed in red velvet bows the more the merrier for Harrison. He would call those houses “fancy.” The endless hours of shopping—grandma and I would buy him new DVD’s or Game Boy games, for his hand-held devices to keep him occupied and he would sit in the stroller for hours after he tired out, never complaining, always willing. The wrapping—he was the “go to guy” for the tape and bows. He would tear small pieces of tape and stick them all along the edges of the kitchen table for me to grab. Then he would thoughtfully choose each bow and carefully place each one on the gift, often choosing the color based on the person’s favorite and not based on matching the wrap. It’s funny how you can remember all the impossibly little things…how I wished he was tearing tape this year. And we can’t forget the baking. He was a master in the kitchen with ginger cookies—rolling the tender dough balls in a bowl of granulated sugar and squashing them with his thumb on the cookie sheet—and pumpkin bread. Most of the MSKCC staff can attest to that as they often were the recipients of a successful neutropenic baking weekend. But…I cannot bring myself to do any of it this year—nothing feels right.

Mike was braver than me…bundled-up this weekend; he spent most of Saturday outside putting the garland and lights around the front door, gingerly circling white lights around what we affectionately call the “Harrison tree” in the front yard [a small willow tree that looks more like a q-tip on steroids that Harrison picked out 2 years ago during a landscaping phase he went through] and with great consideration placed the lighted reindeer near the tree. It’s Mike’s way of remembering—it was his “small pieces of tape.”

And together, while most people shopped for their children, their families and their friends Mike and I shopped for a little Christmas tree and tree-skirt for Harrison’s grave-site. There was our Target shopping cart. It seemed harmless enough, its occupants— one 2’ tree; one mini red tree skirt trimmed in white faux fur; one small silver star; and a package of garden stakes to secure it all into in the ground—all seemingly appropriate. For all those mindlessly peering into our cart, we seemed just like everyone else plucking decorations for the impending season…but we aren’t like everyone else…in fact it feels like we are so alone and that no one else could possibly understand the misery and grief that the contents of our Target cart represented. Who knew that an innocent red buggy filled with such sorrow could be artfully camouflaged as holiday cheer.

So far, that’s all the shopping I have done. I can’t bring myself to go without him. I need to go…I guess. It seems so strange not to shop for him this year. Mike and I are, at least, buying for an angel tree child. We picked a nine-year old boy. Our motives were selfish; we had to do something to dull the pain that swells daily from the inside. I do hope it makes that little boy’s Christmas a bit brighter but honestly I hope it in some way helps to make our Christmas brighter too—we are desperate for something, anything. I long for the woes of the Santa list.

Last year around this time, Santa, was no doubt panicking when he saw Harrison’s Christmas list that included a 1984 vintage Transformer. He reminded me that it was the season for magic and miracles—because I obviously forget when I suggested that Santa may find that to be a challenging request! Thank gosh Santa has so many helpers and elves, especially ones often disguised as grandpas to help get the job done. I remember the look on his face when he opened his 1984 Megatron Transformer—it was a more of a “I told you Santa could do it!” To the elf that made it happen, that look was worth a lifetime of Christmases…thank you.

My dearest Harrison…I am trying to remember that it is the season of magic and miracles. I wish you were here to remind me…




a note to our friends and family:
as you can imagine this holiday season is impossible for mike and i. we are working hard at making sense of it all. as part of our attempts to do that we have placed a small christmas tree at harrison’s gravesite. we have decorated it with some of his favorite ornaments and invite you all to place any additional ornaments on the tree or anything (notes, pictures or harrison memories) under it. it may be something that his young friends would find helpful in their healing process or a tangible way for their generous hearts to share with the friend they can no longer trade gifts with. my niece, emma, was very worried about how harrison would get his stocking in heaven. grandma, in her infinite wisdom as only grandmas have, assured her that harrison was now part of the christmas magic and he would not need his stocking but would instead be helping santa deliver gifts and miracles this year. grandma’s beautiful translation also seems to help my nephew, logan, who is wishing that santa bring harrison back for christmas this year. so for any of you who would like to decorate harrison’s tree, we welcome it. if you are long distance, please feel free to send anything to our home address that you or your children would like to add and we will make sure it gets there.
with gratitude,
gina and mike

Wednesday, November 5, 2008 7:15 PM CST

Run hard, be strong, think big!"
- Percy Cerutty


Well, the marathon was Sunday and—I DID IT! And it was AMAZING. It was one of the hardest, most rewarding, and best experiences I have ever had. We (Jeff and I) finished in 5 hours and 34 minutes, which was fine with me, as a first time marathoner and runner. I raised just under $12,000.00 which in itself was fantastic. But the real reward was in looking at the faces of my family, my friends, other cancer parents, current pediatric patients and Harrison’s nurses and doctors as I ran past the doors of Memorial Sloan-Kettering Cancer Center, at mile 17. It was a feeling I cannot put into words. I knew Harrison was there; I felt him every step of the way.

I cannot thank you all enough for the encouragement and support. Thank you to my family for being there, to Jeff for having the heart and patience to stay with me the whole race, to Linda for jumping-in at the last 13 miles for encouragement, to Leah for waiting at mile 25 and to my precious Harrison for the inspiration and the strength from the start to the finish. You are my role model—the warrior I am proud to fight alongside and the hero who keeps me going. This is for you my love, my Harrison.

With gratitude,
Gina

Next year’s goal: 5 hours and 15,000.00!

Friday, October 31, 2008 10:30 AM CDT

The leaves of memory seemed to make
A mournful rustling in the dark.
~Henry Wadsworth Longfellow


Well, here we are—just days away from the big run. I can’t believe it’s here. I have arrived safely in the New York area but I cannot say my travels were without challenges. I drove myself up from NC, which in itself was fine, what I was unprepared for was the rash of emotions that accompanied me on my drive—both a familiar friend and an unwelcome reminiscence.

The route I took was always the same. The route from one home to another, either heading North into the unknown—the treatment plan, the scans, the uncertainty that comes from living in the world of cancer OR heading South home to the known—the love of my family, the safety of our house and neighborhood and the support of our friends—the foundation that made us strong. But this trip was different—it was neither to treatment nor with Harrison, nevertheless, the highway was the same. The sea of trees that blanketed the mountainside, on hwy 81, through Virginia, still brilliant in their Fall foliage—the colors of golden pattypan squash, the deep orange of pumpkin and the rich dark reds of pomegranates—seemed unaffected even though there was one less passenger on the trip.

Every restaurant, still there, waiting for us to stop for nourishment along the way; Cracker Barrel, Harrison’s favorite roadside dinning joint (all 40 of them along the I-77N/81N) in spite of his death remain in-tacked and patiently awaiting his arrival, impervious to the idea that their most faithful customer would no longer grace their doorway. There would be no pit-stops this time, no pancakes for breakfast or chicken fingers for lunch, no cross-examination of the floor manager regarding the possible vanilla flavoring lurking in the batter or how chicken fingers “hot off the press” not ones that had been sitting under a warmer for hours were an unprecedented necessity to his overall health. It seemed as though our road trip travels always revolved around urine collections or low white counts. Not this trip though—how I longed for the Cracker Barrel manager to bring me the list of ingredients on the pancake mix box or the argument that might ensue when lemonade was not an option due to citric acid restrictions.

For those of you never “privileged” enough to dine at a CB you might not know that the actual draw is the large gift shop that you must actually walk through to get to the dinning area. Much like Disney Land “all roads dump into the gift shop.” But as most of you do know, Harrison was a trinket collector souvenir shopper extraordinaire and the Cracker Barrel was a haven for our little buyer. But this time, there would be no useless items purchased, in attempts to appease him for the last hours of the trip. It was just me, alone with my memories and the nostalgia that will forever link me to the roadways that stretch between our home, the mountains of Virginia, the pastoral Pennsylvania and the heartbeat that is Manhattan.

I arrived safely but I feel like a piece of me is still at the Cracker Barrel on Hwy 81N in Virginia my heart hurting and broken. It is for this reason that I must stay focused on the words of my dear friend, Julie— “Run for Harrison, run for my Adam, run for all the NB kids, run for you, run for life.”

See you at the finish line…
Gina


Tuesday, September 23, 2008 4:00 PM CDT

What can we do but keep on breathing in and out, modest and willing, and in our places?
~Mary Oliver


For almost my entire life, I have never thought about the act of breathing. It’s something, as organic beings that we just do; it’s part of our natural life function…until you actually start to pay attention to your breathing.

The long runs, in my marathon training are getting longer—20 miles last Sunday. As part of the training, you must be acutely aware of your breathing. There is a manual and art to breathing, something to study something tangible to aid your survival. The act of running takes away your ability to breathe easily, it puts you “out of breath” you must learn to breathe against the very force that seeks to seize it. During the running portion of the run I must consciously think “breathe in breathe out” on the walk portion of the run I think three shallow breaths one long belly breath, three shallow one long belly etc…And then my mind drifts to Harrison. His life was a series of breathing rituals and exercises from the day he was born. But there was no manual for him, no survival guide to breathing against that which robs your every breath.

The piercing cry of your newborn—the first sign they are breathing, although it hardly sounds like breathing more like torture. Then the cries settle and the involuntary act of breathing begins. And generally, it is then, that breathing is dismissed as a concern, a thought or even an enemy.

When he was three involuntary breathing was no longer taken for granted and the work to breathe again began, for him and for us. On life support at three with only one working lung, breathing was anything but normal. I learned to breathe again to help him breathe again. His back on my chest—draw in a big breath visualize it moving through the upper lung, down to the lower lung, inflating all the tissue that lies within is pompous reach. Helping him breathe again, helped me breathe again.

As the years moved on, breathing was still a blessing. I would watch him sleep, conscious of the steady flow of cool air in through his delicate pink nostrils converted somewhere in the tiny cavity of his chest to the warm sweet breath that would tickle my cheek, as he gently exhaled. I coveted the nights he was rewarded with fitful slumber and I with the privilege to witness.

In the weeks before his death, the simple act of breathing, the bodily function we most take for granted, became one of our biggest challenges. Each breath was slow, shallow and labored; its only focus to seek the air his body needed to stay alive. Each breath’s sole intention was to make it to the next—purposeful, rhythmic, resolute. This required help, in the form of a large steel drum, inert in appearance but filled with oxygen the symbol life, attach by a tube to the plastic mask that guarded his face, a mask supporting life but a talisman of death.

Like cancer, running seeks to steal your breath, deprive you of the air your body needs and you must fight to breath against it. Maybe that’s why I chose running, so in some small microscopic way I could feel what he felt maybe I could feel him nearer. How I long to feel him near.

I am training to live a life absent of his breath, there is no manual, but I am breathing my dearest Harrison, for you I am breathing. I miss you more everyday, you are my life you are what I breathe in.


breathing one day at a time,
Gina

Note: The above picture is of Harrison when he awoke from his 4 day sleep in Sept. last year. Read Sept. 21, 2007 entry in “journal history” and it will explain the picture. As for the other pictures, they are of Harrison last fall and the one of the exhausted looking adults is Jeff, Sheila and me coming in from our training run last Sunday (20 miles!). Our wonderful neighbors all came out to cheer for us. Jeff is the dad of Harrison’s classmate and friend Jacob Schall. He is running the marathon with me and Sheila, my sister-in-law, bikes every week with me. She is my trainer, my water liaison and one of my greatest supporters. I could never do this without her or the amazing encouragement from the rest of my family and friends! Thank you all so much, I love you and I am grateful for you.

For more info on the marathon click on my Fred’s team page you can also check in on Jeff at Jeff’s page.

Tuesday, August 19, 2008 1:21 PM CDT

What does a snail say when it rides on a turtles back? “WHAHOO!”
—my friend Dave


Last week, I was speaking with one of my dad friends from MSKCC, Dave, who also lost his precious son to NB over a year ago. Dave, with so much kindness and love, reminded me that life is always a matter of perspective. He helped me to remember that were it not for our sons, the lives they led and the places it led us we would never have had the wonderful life we had and still have. We recapped our son’s adventures, both medical and recreational; the unbelievable people and other heroes we met along the way; and the privilege it was to stand by our children every moment of every day. He doth profess that we have indeed had a wonderful life…not everyone would see it that way…it’s a matter of perspective. From where the snail sits, atop a turtle, life seems pretty good.

We talked about how amazing our boys were/are and how they are still making a difference. He asked me…”do you know how lucky we were to have spent everyday with our children, everyday of the 5 plus years each of them was in treatment?” He said he did the math and that in the few years we each had (how ever short they seemed) we had more hours that most of our friends will ever spend with their children because of school, work, and the activities that a traditional life brings. He said…”we were lucky, we had a wonderful life and love with our boys.” He’s right…not everyone would see it that way…it’s a matter of perspective. From where the snail sits, atop a turtle, life seems pretty good.

I needed Dave to remind me, usually I can remember but sometimes it’s hard, not to let what you’ve lost out-way what you’ve had. He’s right, we had more than what some will have in a whole lifetime. So often, it just does not seem like enough but it was all I was given.

Last Sunday, it was six months…how did six months go by? Time is one of those incredible elements that can seem to soar past you at an incredibly slow pace. Kind of like a snail before and during his ride on the turtle.

I miss him, and love him, both, in life and in death…

Thank you, Dave for sharing your perspective.

WHAHOO,
Gina

p.s. as promised my Fred’s team page is up and running. The training is grueling but my role model is mightier. The donations are going well, but the sky is the limit. The more we raise the better the chances for a cure and the hope that one less child will suffer and one less parent will be left behind.
No amount is too small…it all adds up…it’s just a matter of perspective.

Wednesday, July 16, 2008 4:16 PM CDT

A measurement is not an absolute thing, but only relates one entity to another?
H.T. Pledge (1966) Science since 1500. 2nd Edn. London: HMSO. p. 296.


Wow, it has been 2 months since my last update. I am not really sure where the time is going. The summer if flying by and it has been five months since Harrison died. How did that happen? Some days it feels like a lifetime ago and other days it feels like yesterday. Feb. 17, 2008 the day by which all things will now be “measured” that and the year-to-date [the other scale by which absolutely everything is measured, “what were we doing last year at this time” a phrase I continue to find myself using, asking and applying to my current moments]. The real question is what happens when I no longer have a “year-to-date” to measure my life by? What happens on February 18, 2009, the date that I will no longer have the year before to compare, remember, smile about or commiserate over? I find myself desperately grasping onto the only thing I have left of him—the past, the memories—staring at pictures and trying to recount the smells, the sounds, his voice, the weather. How do you move forward, create new memories, and a new life when all you really want is the old one? How do you measure your life if the entity that you relate all things to is longer there?

Looking back at my journals from last year [at this time] I was so touched by the July 11th entry. Harrison’s love for Luke and Bryce was really special. I remember that day we spent with both families—I remember lunch at the hotel; I remember what they ate, sitting Indian style at the coffee table; I remember the walk we took to FAO Swartz and that Harrison declined ice cream to hurry us along to the park where he wanted to rent remote control sail boats; I remember how it was closing time for the boat rentals and Bryce’s Dad talked the man, under the canopied umbrella stand, into “just few minutes for the boys;” I remember that Bryce’s boat got stuck and Harrison helped him; I remember the jungle gym and the climbing in the park they did afterwards; I remember the struggle it was to get him to leave; I remember the smell of the street pretzel he wanted on the way out and I remember having to say no because of blood counts; I remember like it was yesterday but it was this time last year . What a bond they had. And how I adore their parents and how grateful I am to still have them in my life. Harrison looked wonderful this time last year. I look at those pictures and ask myself—how did we get here? How did that happen? But, of course, there is no good explanation. So Mike and I are doing our best to smile, laugh, cry and remember our son and everyday we celebrate “this time last year.” One of my biggest fears is that someday I will forget and my memory will fade or people will stop talking about him. I hope that never happens…I am doing my best so that that never happens.

So as the days of summer and life roll on, it has become increasingly more important for me to find purpose a reason a cause to stay moving forward, and truth be told some days are just in reverse and I accept that as part of the grieving process, for he was my love, my life… but [for me] it honors Harrison more to pick-up and get something done. That’s exactly what he did everyday…how can I not?

The Harrison Nichols Foundation has been a great way to stay active the fight against Neuroblastoma and a beautiful effort to keep Harrison's spirit alive and remembered. We have done well in our fund raising efforts and are looking forward to supporting both new research and assisting several families in the next few months. I am so proud of the work The HNF is doing and I am grateful to all of our supporters and volunteers. We should have a new/revised web site up by the Fall with our latest info and news!

Another opportunity has also recently come my way. I am [for those of you that know me HOLD ONTO YOUR SEATS] running the ING New York Marathon this year! Yes you read correctly. I have the privilege of running with Fred’s Team, which supports the Aubrey Fund for Pediatric Cancer Research at Memorial Sloan-Kettering Cancer Center. I am, of course, running in Harrison’s memory and all the money I raise will go directly to the Aubrey Fund, which very generously gives to Neuroblastoma research, at Memorial, every year. I will be putting together my Fred’s Team web page soon and will post all the info necessary for those of you who would like to support my efforts. I have been training since the beginning of May and so far so good. I never thought this would be something I could accomplish and I am very proud to do it for Harrison.

I am not sure what else to write about or what else to say. This page was always about Harrison, his life, his fight, his journey so I will try and keep it about his memory and the work we are doing in his name.

I hope the rest of the summer finds you all well, rested, enjoying the season and blessed beyond measure.

Warmly,
Gina
p.s. enjoy the pictures from July 07!

Tuesday, May 6, 2008 2:45 PM CDT

Hope is the feeling we have that the feeling we have is not permanent.
~Mignon McLaughlin, The Neurotic's Notebook, 1960


It’s hard to believe that Mother’s Day is almost upon us and my sweet Harrison has been gone almost 3 months. There are days when I wake-up and it still does not seem real, like something I dreamed might happen but was too horrible in every way to really happen. But it did, and we are still here and he is not…

Looking back at last year’s journal around this time, I find that I am jealous, of even myself. For last year, I spent Mother’s Day with Harrison. I could touch him, laugh with him, kiss him and adore him. He was feeling so well, looking great; how is it that one year later I am left without him, with just my memories to cling to, on Mother’s Day.

It seems that every day I cannot imagine bearing one more day without him, but I awake and I do [bear the day]. The daily rituals I perform seem scripted, as if they were written to help me survive one more day without him…wake to brewing coffee, make it to the gym [yes I started working out, perhaps with the deluded idea if my body was in more pain than my heart the aching would lessen—not true], shower and find something to do with rest of the day—something that means as much as taking care of Harrison and of course nothing does.

Plan B—concentrate on hope—that the feeling we have that the feeling we have is not permanent. So I am trying to stay in forward motion. I have found that what gives me the most relief is the idea of staying “in the fight.” I have been concentrating on fundraising efforts for the Harrison Nichols Foundation [which our family started in 2005] to raise money for other families struggling with Neuroblastoma and to fund research with the hopes of someday finding a cure. We have several big events planned locally, in the next few months. It makes me feel like I am still fighting for him and with him [well sort of…]. It has become increasingly more important [to me] to keep his name alive, his memory alive. So if you see me, please talk about him, ask about his life, tell me a story or a moment you remember about him. So…

Here is where I must give thanks to everyone who has done just that. Harrison touched so many lives that the sheer unsolicited willingness from friends, schoolmates, neighbors and utter strangers to keep his beautiful spirit alive has been overwhelming. It’s almost as though Harrison was the first domino in a circle of dominos. He created a chain reaction, one person passing on to the next something they learned, heard or hoped and onto the next and so on and so on… Until every domino in the circle had been touched.

There has been a financial scholarship started at his school via the efforts of one father wanting to make a difference. Jeff [a dad from Harrison’s class] ran a full-marathon last month raising-over 6,000 dollars towards the scholarship. A school “good character” award is being given in Harrison’s name. Newspaper articles have been written about his brilliant life and the difference he’s made and is still making. And one of his Neuroblastoma peers-a girl Harrison’s age—a survivor is walking in Central Park this weekend raising money for research in his name. And one of his Davidson Day schoolmates, a young boy in the 5th grade, for a French class writing assignment, wrote a beautiful story about Harrison [whose favorite flower was the sunflower].

This is where I gain my hope, my strength, my will to keep moving…after all…he could not die and then there be nothing…his life was not and will never be about the 5 ½ years of treatment, suffering and death…it will be about the life he gave up for others to gain.

So I hope and I pray that… the feeling we have that the feeling we have is not permanent.


**see photo album for last May's beautiful pictures



Please take a moment to read Jake’s wonderful story. It was originally written in French, I am sharing the English translation [courtesy of the 5th Grade French teacher].

La Petite Fleur de Soleil
Jake Geller, grade 5, Davidson Day School


Once upon a time there was a tiny sunflower. It was orange, brown, green and yellow. It was incredibly beautiful; however it had a very fragile stem.

One day a strong wind blew. After the storm, the little sunflower became weak but still managed to smile.

The next week there was another storm; however this time it was a snow storm. All night long the little sunflower battled the storm but it was too weak.

The next day when all of the other flowers were waking up, they realized that the small sunflower had passed away during the storm. The other flowers knew that they couldn’t possibly be sad because the small flower had already dropped his seeds so that sunflowers could continue to touch the lives of others, forever, and ever, and ever.

[thank you Jake Geller,, Gina and Mike Nichols]

Friday, March 14, 2008 11:36 AM CDT

i carry your heart with me(i carry it in my heart)
ee cummings

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)






Where do I begin to describe the days and nights that have filled the space between today and February 17th. I am not sure I can—words like empty, sad, broken, lost, desperate and lonely are all good feeling words but none do justice to the reality that Mike, me or our family faces everyday…every second…every minute…every hour… of every day without Harrison. In fact, words [at least in the English language] fall short when trying to describe what this feels like…it feels more physical. Like the time when you were a kid and you would challenge your friends [or sister in my case] to who could hold their breath the longest underwater. And there were those times when you just had to win so you held on a second or two longer than you should have…you emerged from the water like you had been shot through a cannon sputtering, coughing, choking and gasping for air. Your lungs feeling as though they have been seared on a hot grill, you are sure that you have caused some fatal lung damage, surely irreparable by the feelings of sharp pains emanating from deep within your chest with every breath. The only fear larger than the death that you have conjured, in just split seconds in your head, between desperate gulps of air, is the wrath of your parents should you have truly caused irreparable lung damage. I guess this feels something like that only worse and it’s your heart not your lungs and you’re certain it’s irreparable and you’re certain you will never catch your breath again and you don’t fear the idea of death.

I think of him with each breath [I do take]…inhale [Harrison]…exhale [Harrison]…that’s at least one thought of him every second. I breathe him but I cannot smell him, hear him, see him or touch him. I long for his warm breath on my face each night as we say our” I loves you(s)” snuggled in bed and I long for his touch (a poke really) waking me each morning. He is my last tear at night, my first ache each morning and the stuff that floats, fills and occupies the middle.

I hesitated writing this entry because I struggled to find anything really worthy of saying. All that I did, all that I was and even this web site is a reflection of Harrison. I dreaded finding myself spilling misery out across these pages but what else could I possibly share right now?

Harrison was such fighter; graceful and stoic in nature not wild and crude. If it was him, he would still get up each morning, face the tasks of the day head-on and find some pleasantry strewn through the depth of the unpleasant [like the time he had a horrific nose bleed in the middle of the night and during the 1 am drive to Urgent Care he pointed out how all of his favorite buildings in the city were lit up at it made the ride not so bad].

I am trying to do as he would do.

But my days, my life and even I am unrecognizable without him.

I am desperate to find grace in the life we are forced to live without him. I’ve looked, I cannot find it yet. I guess someday…I hope someday grace, peace and meaning will find me again.

I do carry him in my heart…it’s just not enough.

Harrison would have celebrated his 9th Birthday, this Tuesday, March 18th. I will not have the strength for an update on that day but please think of him and that beautiful sweet face and maybe eat a green cupcake or two! (in the photo album are pictures from his 8th birthday)

The kindness of our friends, neighbors and even strangers whose lives Harrison touched has been remarkable; we read each note, each card and each guestbook entry and it serves to soothe the [stabbing, writhing, pulsing] pain even for just a moment and we are grateful.



Tuesay, February 19, 2008 7:40 PM CST

First, Mike and I want to thank everyone from the bottom of our hearts for all of the wonderful warm thoughts and well wishes. We are so grateful that so many of you were touched by Harrison's short but beautiful and brilliant life. For Mike and I the journey has changed and everyday will bring new challenges as we try to live without our precious Harrison but we will find comfort knowing he will live on in our hearts forever. I will write more again soon, the next few days will be busy with celebrations of our greatest gift.

With our deepest gratitude,
Gina and Mike


Arrangements to Honor Michael Harrison Nichols
March 18, 1999-February 17, 2008

A visitation in honor of Harrison will be held on Friday February 22, 2008 from 5pm to 8pm at The Raymer Funeral Home in Huntersville, NC.

A Celebration of Life Mass for Harrison will be held on Saturday February 23, 2008 at 11 am at Saint Mark Catholic Church in Huntersville, NC with the burial to follow at Mt. Zion Community Cemetery.

Raymer Funeral Home
16901 Old Statesville Road
Huntersville, NC 28270
704-892-9669

Saint Mark Catholic Church
14740 Stumptown Road
Huntersville, NC 28270
704-948-0231

For out-of-town friends and family a block of rooms have been held at the Courtyard by Marriott in Huntersville, NC.
Please reference Erin Marriott when making your reservations

Courtyard by Marriott
16700 Northcross Drive
Huntersville, NC 28270
704-949-4900


Directions

From Airport to Courtyard by Marriott:
Exit the Charlotte Douglas airport onto I-85 North and merge onto I-77 North. Continue North on the I-77 until exit 25 (Huntersville/Concord). Take a left at the top of the exit ramp onto Hwy 73. At the second light make a left on to Northcross Drive. The hotel is located on your immediate left.

From the Courtyard by Marriott to the Raymer Funeral Home:
Exit from the hotel parking lot to the right on to Northcross Drive. At the light make a left onto hwy 73. Cross over the I-77 and continue on the 73.
Cross over the railroad tracks (approx 1 mile). Make a right onto Old Statesville Road, The Raymer Funeral Home will be on your right.

From the Courtyard by Marriott to Saint Mark Catholic Church:
Exit from the hotel parking lot to the left onto Northcross Drive.
Continue on Northcross Drive until you get to the circle intersection.
Go around the circle veering to the right onto Stumptown Road. Saint Mark Catholic Church will be on your left hand side.


*Please contact Erin at (home) 704-583-5815 or (cell) 704-771-8406 if you have any questions regarding the above information.






Monday, February 18, 2008

Whenever Harrison would ask me how Mike and I “got” him, I would always tell him that he was our special gift from God, and that it was from God that he came to us. Harrison believed he was from God and would often tell me that he remembered flying down to me from heaven…

Last night, in my arms surrounded by his family, our beautiful little boy flew back to join God.

He was the greatest gift I ever received and always will be the love of my life.

Please look for the posting of arrangements in the next day or so and always think of our beloved Harrison as the truly brilliant light that he was and always will be.

Gina and Mike

Tuesday, February 5, 2008 5:51 PM CST

In the confrontation between the stream and the rock, the stream always wins - not through strength, but through persistence.
- Buddha


It has been weeks since I have written, and I am sorry for the delay. But as I promised, I would only update as emotions and time permitted and time has been precious and emotions to overwhelming to articulate.

My last entry was on January 12th and as planned Radiation Therapy to Harrison’s liver and low dose oral chemo began on Monday, January 14th. By Thursday [Jan. 17th] Harrison was admitted to the hospital—symptoms—in need of oxygen support, a rapidly swelling liver, declining kidney function and the beginnings of extremity swelling…and we were told it was the beginning of the end. So with only 3 days of radiation under our belts the situation turned impossibly bad and treatment ceased. Terrified and stunned we quickly shifted our focus and moved into “keeping him comfortable” mode. We were told that Harrison would pass during this admission. It was as if those weeks in September had reared their ugly heads again…and again we found ourselves opposite our worst enemy…only this time it was even more unbearable because he was suffering. Mike and I were so helpless, a likeness to feeling bound and gagged while the unimaginable unfolded around us.

Miracles do happen…

And, AGAIN, Harrison made us Believe in the Unbelievable and after 10 very dark and scary days and terrifying nights we walked out of the hospital with our precious child, alive. Harrison truly fought his way back. Harrison’s life and journey will clearly be on his terms regardless of what is supposed to medically happen. Harrison has shown us that we must never loose faith, no matter how desperate and bleak the circumstances.
For years, I have prayed for a cure for Harrison and that he be able to lead a long and healthy life and then my prayers changed and I actually found myself, just a few short weeks ago, praying for peace for my child and for the suffering to stop. Harrison has, again, taught me that what I must pray for is the strength to trust my faith and to trust God and the Universe and their infinite perfection and finally to trust Harrison’s amazing spirit.

So today, as I look at my beautiful Harrison we are feeling blessed and hopeful. He was able to complete all 10 radiation treatments, with help of a wonderful team of techs from the radiation department who seemed as determined as me and Mike to save our child. And since we have been out of the hospital Harrison’s continues to get stronger and stronger everyday. We are taking one day at a time and focusing on Harrison’s happiness and well being.

And we will follow where he leads…

Harrison, through this latest experience, has found that he enjoys massage therapy [from a great pediatric massage therapist, Rocco]. It has helped tremendously with his circulation and fluid re-absorption, and this week we are trying some reflexology to help with organ function and circulation. Harrison has also found that he enjoys a Japanese method of energy healing and has received one treatment. We are using all aspects of Western Modern Medicine and Integrative Medicine to help with Harrison health, overall wellness and quality of life.

In the meantime, while I attend to Harrison’s whole body and spirit the Team, on the medical front, is formulating a new plan. Harrison has shown that he is here and plans to stay in the game so they are going to have to get their game faces on and come-up with something for him. We should have some idea later this week about options.

Harrison is such a remarkable child—how I ever got this blessed I will never know but I will forever be grateful. His soul, like a gently flowing body of water, continues its graceful meandering, around, over, under and through the obstacles in its path; always persevering and moving forward with endless energy and an unparalleled life force.

With love and unbounded gratitude,
Gina


Saturday, January 12, 2008 9:02 AM CST

It does not matter how slowly you go so long as you do not stop.
—Confucius
Chinese philosopher & reformer (551 BC - 479 BC)


Do they make a Fentenyl patch (pain medication) for your heart?

Well, once again I find myself writing an update I hoped would never come. Harrison’s tests results are back and his disease has progressed substantially in just a few short weeks. The most alarming thing is his liver, which has never, not in almost 6 years, had any involvement is under siege from Neuroblastoma and in just one week has enlarged to 3 times its normal size. Of course, we are painfully aware of what all this means, we have been around a long time, witnessing those who have come before us in this struggle, but that does not mean that we will ever give up hope. Harrison is our great hope…he feeds our optimism…he is our strength… and he is the light and love of my life. So, we are making a plan. We cannot just sit by and let this beast hurt our child for one more moment that it has too.

The Team is supportive of whatever Mike and I choose but they too are willing to continue to help. And we are all taking Harrison’s lead. I have always known that ultimately Harrison will choose the course and his spirit is driving the ship and that we are honored accompaniment to his amazing sojourn— helping, shepherding, advocating and guiding him along the way—Last September’s turn of events confirmed this further. We will again follow his lead. And again he shows no signs of stopping. Despite the swollen belly and abdominal discomfort, he is happy, eating, playing and still enjoying his Transformers and his Legos…he is not giving up so neither are we.

The plan is to begin a course of radiation to his liver Monday. Dr. Wolden, the amazing radiation oncologist here at MSKCC, is completely on board with offering Harrison as much relief as possible from the continued daily swelling of his belly. He is very responsive to radiation and we are intending that this time will be no different. In the meantime, we have started a low dose 42 day course of Temozolomide (oral chemotherapy) and everyone is agreed that the minute the therapy does more harm then good or the minute Harrison decides to change the course we will. To be honest with you all, Harrison is actually looking forward to the radiation, as he knows it will offer almost immediate relief for the discomfort, much like it did in September…so with our precious child’s consent we begin the next step. We are not labeling it palliative care or active therapy or whatever other terms are out there; we are simply honoring our child and doing everything possible for him.

I am not changing the pictures on the web site, on purpose this time. When you look at them and please do, again and again, this is how I want you to see Harrison—alive, happy, content and full of life. He does look just like these pictures, just with an added potbelly. So picture him with is baby cousin, two lives, two precious children of God, two beautiful spirits full of love for one another...Picture him with his hands thrown up in VICTORY, victory for having received the best Santa Sack of loot, victory for living an amazing life and victory over every obstacle that has ever come his way and…Picture him with his arms wrapped around one of the true loves of his life [Logan] and how the bond they share in their short lifetimes some will never experience. Surround Harrison with your love, your light and your prayers not your fear. He has risen above everyone’s expectations before and your love and support have helped him to do that. After all, he is Harrison.

So as our friends and family, Mike and I only wish is for your prayers and your highest intentions for Harrison. The weeks ahead will be intense, I am sure, and I will update as time and emotions allow. Please always think good thoughts for us and for him.

With love and hope always,
Gina

Sunday, January 6, 2008 10:22 PM CST

You may have to fight a battle more than once to win it.
—Margret Thatcher


Happy New Year! It has been a busy end of 2007 and an even busier start of 2008 for the Nichols Family. Harrison was able to enjoy several weeks home over the Christmas Holiday and really had a great time. He did quite well with Santa, and deserved it all if you ask me. He played with friends and his new gifts in-between trips to clinic for platelets [3 times per week]; yes the platelet crunch has begun again, UGH!
Aside from that and an intermittent cough all is well.

And the really BIG news is that we have a new baby…well not me, of course, but my sister and brother-in-law. Liam Cleminson Marriott, 6 lbs 14 oz, joined our family yesterday afternoon around 3:30 pm. Harrison and I were thrilled to be in NC for the birth. Mom and baby are well and the family was happy to sit in a hospital waiting room for a such nice reason!

Tomorrow, Harrison, Grandpa [Grandma will stay and help Auntie with the new baby] and I will head north back to NYC for the next step…a testing work-up…to assess Harrison’s disease burden and make a new plan…chemo is out due to the low platelet count so we need to find new treatment options.

Harrison is such a fighter and is not giving-up yet he has fought a multitude of battles and someday he will win!

Please continue to send Harrison his friend Luke [who is also fighting the good fight in NYC] love, light and prayers. It is going to be intense week of testing and we need some good results.

May 2008 be a year filled with health and peace for everyone and the year that a cure is found for our children.

With love,
Gina

Wednesday, December 19, 2007 12:24 AM CST

Mom…it is the season of magic and miracles! Yes, Harrison, yes it is!
—Harrison and Gina


This is Harrison’s response to me when I commented on the challenges Santa will face this year as he tries to fill Harrison’s wish list of vintage Transformers from the early 1980’s!

Sorry it has been so long since my last update, but life has not been without its challenges. Harrison was not feeling well at all during the Thanksgiving Holiday but is his light is shinning much brighter now and we have returned home for the Christmas Holiday. His disease burden remains substantial and we are continuing 5-day courses of chemo every 3 weeks.

We are enjoying time home with our family and friends and Harrison loves all the trappings of the holidays; the baking, the shopping and the wrapping and has been quite a help in all 3 categories.

Our intentions are to just enjoy the time we can spend home and count our abundant blessings again this year. Our newest blessing is due in January, as Harrison will become a big cousin for the third time; Auntie Erin (my sister) and Uncle Jason are expecting in just two weeks! Harrison is thrilled with the impending birth and is already planning a close relationship with the new baby.

Sorry this is so brief but I just wanted you to know that Harrison is well. I will update again after the first of the year or when I become an Aunt for the third time, which ever comes first!

The new pictures are of Harrison, “his personal 4 ft tree” and one of his best friends Luke (who Harrison just adores).

I hope you all have a season filled with peace, joy and love,

Gina

Sunday, November 25, 2007 3:24 PM CST

Life is...

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfil it.
Life is a sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

Mother Teresa


It has been a while since I have updated, I hope everyone had a peaceful and blessed Thanksgiving Holiday. We were able to have a week at home in North Carolina, where Harrison attended his first day of the Second Grade with his class. And after a short week at home, we returned north to celebrate Thanksgiving at the apartment and had a lovely dinner filled with many many blessings. Harrison has been a bit on the tired side lately and is clearly battling the after effects of radiation (from October) as well as his continual battle with neuroblastoma. He did mange to climb atop his dad’s shoulders to place the star on the tree, as we began our holiday decorating [in the apartment] this weekend.

As for the medical front, it is week 3 off from chemotherapy and so begins the testing work-up to asses his disease status and to, hopefully, help us determine the next most promising treatment option for Harrison. This month begins, what most feel is, the season of miracles [although I believe in them all year long] and I will never stop believing that someday Harrison will have his miracle and that his Life will be all is should be; until then we will continue to “fight for it.”

Please pray that the test results lead us down the intended path for Harrison and to the next step toward the rest of his life.

With love and never ending hope for Harrison’s Life and all that it could be…
Gina

Thursday, November 1, 2007 7:58 PM CDT

Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish
~John Quincy Adams


Just a quick note to say Happy Halloween! Harrison had a terrific day, after a morning pit stop in clinic for a vampire “filler-up” on blood we were off to a GREAT Halloween Party. Harrison’s friends Luke and Victoria hosted a wonderfully festive party at their home. Harrison and Luke share a very special bond, both are Neuroblastoma survivors whose spirits are gently and beautifully connected. Luke and his family pulled out all the stops and made it a very special day for Harrison, Grandma and I. Thank you Denise, Jeff and Christina for the best Halloween away from home we could have asked for.

Harrison continues to do well. We have enjoyed a full three weeks off from chemo, waiting for Harrison’s counts to recover [good practice for the patience and perseverance thing]. We should be onboard for treatment for Monday. Until then, we will enjoy the weekend with Mike, who is flying-up on Saturday.

Until my next update…be well.

With love and gratitude,
Gina

Monday, October 29, 2007 9:14 PM CDT

So, this past Friday evening, Harrison and I had just picked Mike up from the airport after seven hours of trying to get to NYC because of cancelled fights, bad weather and the chaos of fight travel, when Harrison looked at Mike and I and said

“Mom I knew Dad would make it because sometimes you just have to BELIEVE in the UNbelievable!”


As I drove forward on the highway, the car seemed to propel through the sheets of water washing over the windshield as my body froze, I was sure a bolt of lightening had traveled through the rain straight down from the thundering sky above and struck my soul; my vision was blurred but I had never felt clearer. How does he know these things? How does my eight year-old little Buddha-like child know such Universal Truths as this? How does this child have such unconditional faith? He was absolutely right…sometimes you just have to believe in the unbelievable.

And so we are…believing in the unbelievable that is…especially when your most recent MRI report shows that the leptomeningeal disease, that was previously identified in your child’s head is NO LONGER appreciated and when one of his urine markers drops 7 points and when his LDH is stable and when his total body MIBG reads, overall, stable…especially when one month ago this would have been considered the UNbelievable.

This is what we are praying for…this is what we are asking that you pray for...this is what can happen when we all believe in the unbelievable.

With hope that you will keep believing,
Gina

It is here, where I must make an additional note. On Thursday evening, the day we received the wonderful news of Harrison’s MRI, it was also my dear friend Sharon’s birthday and the two year anniversary of the day her beloved son, Michael’s, body was gently bound by soil as his spirit soared home to God. For me, it was a double-edged sword day that sliced through the dueling emotions of sadness and gladness. For we [Sharon and me] know that Michael is part of the collective oneness that continues to keep Harrison safe but we desperately wished he wasn’t. So, my dear friend Sharon, today [Thursday, Oct. 25th on the day of your birth] your beautiful Angel Michael helped to save his “little buddy” [that’s what Michael always called Harrison] and I hope this adds just a little sprinkle of comfort to your sorrow. I love you.

Wednesday, October 24, 2007 11:27 AM CDT

The family is one of nature’s masterpieces
—George Santayana



The word “masterpiece” can mean any great work of art, a “tour de force” in any medium conjuring many different images but for me I instantly think of a giant canvas, a painting, a masterpiece of light, color, texture and contrast. Our family seems much like a masterpiece in progress, always changing, always growing, always adding more light, color, texture and contrast and this weekend its artists were hard at work adding to the taught-framed fabric of our masterpiece. This weekend our canvas was splashed with the colors of love, joy, beauty, gratitude and even a little adventure as we celebrated the joining of two families—my sister [Erin] and her fiancé [Jason] married in NYC on Sunday. It was an amazing weekend and Harrison was, of course, smack in the middle of all of it!

The weekend began, Friday morning, with a convergence on New York City. My family came from the South [North Carolina] and Jason’s family from slightly more South [South Africa]. It was truly amazing to have both families together for the weekend. Black, Gold and Green [3 of the six colors of the SA flag (the other 3 are red, white and blue)] were lovingly splashed onto our family portrait and everyone was genuinely happy to be in one another’s company. Saturday afternoon brought the colors of bravery, adventure and excitement as the 3 kids [Emma, Logan and Harrison] along with Mike, Uncle Brady and Grandpa soared into the skyline of NYC aboard a helicopter, taking a 30 minute VIP tour of Manhattan with Harrison in the front seat along side the pilot [all this was a very generous gift to Harrison from another family whose child shared Harrison’s journey]. Harrison was beyond thrilled and even wore his army “camo” vest for the occasion. You know the expression “it made my day” well to the family that so graciously gave to Harrison, I think you “made his life” with this unbelievable gift of kindness, you could really tell that he felt larger than life heading into that chopper. It was an emotional moment as Grandma, Aunt Sheila, Auntie [Erin] and I wiped tears of joy off our cheeks, as we watch the helicopter take flight.

And Sunday was the Grand Finale—the Wedding. Erin and Jason, without hesitation, moved their big day to NYC when it became clear that Harrison would not be able to make the trip to Amelia Island, FL [the original site] of the wedding. It was meant to be because the day was absolutely perfect in everyway—from the weather, to how beautiful Erin looked [ok, Jason you looked good too!], to South Africa winning the Rugby and of course to Harrison’s good health. He was so proud to be the best-man and did a terrific job giving his “best-man” toast! He was proud and Mike and I were even prouder. The day was just magnificent and filled with true love for Erin and Jason and for the gratitude we all felt because we were together, our families were complete.

When everyone came back to the apartment after the Wedding, to enjoy [yes] more food and each other’s company it was evident that our families were meant to be joined together on this wonderful day. The laughter, tears and camaraderie were unmatched as we shared the highlights of the weekend. I am so proud of my sister and thrilled for her happiness and delighted to have Jason and his family as part of ours. [And as you can tell from the photos] there are more good times ahead for us—Erin and Jason’s first baby is due in January. It’s a boy and Harrison is all about playing big cousin and can’t wait for the birth.

We were all sad when Monday morning came and everyone departed the city to head back to the real world. But we will always treasure the memories of a special weekend that added such richness to our canvas and further filled our family’s masterpiece with life, love and hope for the future. We are blessed beyond words.

As life returns to its usual ebb and flow, we [Harrison and I] too return to clinic and the routine of blood checks and tests. Tomorrow [Thursday] and Friday, Harrison will undergo his first set of scans, since what he fondly refers to as his “hibernation” in September. I am certain in my heart that the strength of your love, devotion and prayers for Harrison were the blessings that encouraged his awaking. Please continue those prayers and the intention that Harrison chooses life —his family is a masterpiece because he is our artist.

I will update again early next week when the results are in and the treatment plan has been formulated.

with a renewed love and appreciation for the arts,
Gina

Monday, October 8, 2007 7:21 PM CDT

Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.
~Marcel Proust



Just a quick note to let you know that Harrison is doing well; he continues to surprise everyone with his resilience and strong spirit. He is not giving up and we are supporting him in everyway. We are making everyday the best day possible and he seems happy.

This past weekend Mike and I celebrated our thirteenth wedding anniversary and we could not have asked for a better day than the one we had with Harrison. We went to brunch at a beautiful restaurant on the East River, took Harrison to see the movie “The Game Plan” and then, at his request, went out for dinner. Harrison has developed quite an appetite from the steroids used to reduce tumor tissue inflammation [smile]. It was a terrific day and spending it together as a family was a truly wonderful.

As for the medical treatment plan—his team in NYC has been very supportive of providing Harrison with the best possible anti-Neuroblastoma treatment without compromising his quality of life. He is on day 10 out of 15 radiation treatments to his brain and back and is doing beautifully with the treatments. He also started another cycle of moderate dose chemotherapy today, of which he suffers little side effects, thankfully.

We would be grateful if you all continued your prayers for our precious Harrison.

Until the next update…be well.

with gratitude for, Harrison and Mike, my charming gardeners
Gina

Monday, October 1, 2007 9:32 PM CDT

Once you choose hope, anything's possible.
~Christopher Reeve



Well, it has been ten days since I last shared our journey with you. And I am thrilled to be writing tonight about how well Harrison is doing. The day after I posted my last entry, Harrison was released from his inpatient stay and I can truly say it was amazing to watch him get up and walk out of the hospital.

Mike and I decided we would let Harrison guide the way and we would follow. He is choosing to live and we are choosing to hope, so life is moving forward and so are we. I know how many people were praying and sending love to Harrison and I know how many people were scared for him and for us and I know how many lives he touched without ever knowing it—he is an amazing being of light and love. Everyday I feel more blessed than the day before to know him, love him, care for him and honor him. Everyday is a gift I will treasure for a lifetime.

So with life in forward motion we have made everyday a great day…

Harrison started RT (radiation therapy) to his brain and left flank and that is all going well—5 days down and 10 to go. In addition to our daily trips to MSKCC, we have had company. Harrison’s best friend and cousin, Logan, flew up with his Dad [Uncle Brady] last Thursday evening and of course my sister-in-law [Sheila] was already here with us. So we had a great little family reunion last weekend. The boys were thrilled to see each other and it lifted everyone’s spirits, especially Harrison’s. The “Logan Factor” [as we like to call it] is good for Harrison’s body and is healing for his soul so we were glad he was feeling well enough to enjoy his weekend…which started out with a Friday afternoon lunch date with the boy’s First Grade teacher, Mrs. Choate, who was in town for a wedding. Harrison got to show her his favorite NYC dinning establishment [Petaluma’s] of course.

On Saturday, Harrison requested a Fall Apple/Pumpkin Picking excursion. The boys picked 100 lbs of apples! NO REALLY they did pick 100 lbs! I have been baking like a mad woman all weekend! Everyone had a blast. And on Sunday, they snuck in 18 holes of Putt-Putt before the plane took off with our family aboard heading back to NC. We were sad to see everyone go but they will be back in about 2 ½ weeks—my sister and Jason have moved their wedding to NYC so that Harrison [the best man] can still be a part of the festivities without traveling—thanks Auntie and Jason we are all really looking forward to it.

I am trying not to look too far into the future so I am not sure what lies ahead for us. Our plan it just to take one day at a time, enjoying every lovely moment with Harrison. I do know that we plan to finish RT in 10 days and if Harrison continues to look and feel this good we will add a moderate round of chemo next week to complement the RT. We want to do everything possible to give Harrison every chance he deserves.

If nothing else, we have learned that Harrison is the navigator and we are privileged to take his directions—we are grateful and honored to go wherever he goes.

I hope that you will all continue to pray for Harrison; I know in my heart that you are helping to make a difference. Until the next update be well…

Still believing anything is possible,
Gina

Friday, September 21, 2007 7:55 PM CDT

Love floods us with hope.
~Jareb Teague



Dear friends and family,

I know so many of you are praying and thinking of Harrison so I am going to do my best to share with you the events of the last few days. As you saw, from my last journal entry, Harrison was doing very well. Shortly after that, around Labor Day weekend Harrison starting experiencing some pain on his lower left side. We decided to devise a radiation treatment plan to irradiate a piece of tumor in the pleural lining of the lung that has grown and seems to be compressing a nerve causing pain. In the meantime, Harrison was put on a course of steroids to help with the inflammation of this tumor tissue and in turn helping with pain. In addition, a time released pain medication was on board and Harrison seemed to be doing well while waiting for radiation to begin for his stem cells to do their thing. We also decided as soon as we saw signs of counts that we would add a course of Irinotecan (maintenance chemotherapy) to help keep things in check. This past Monday, his counts were really coming in and the chemo started as planned and Harrison was running through the halls of clinic, until Tuesday morning…when, shortly after arriving in clinic he started complaining of a severe headache and vomited. Anyone familiar with the Neuroblastoma world knows headache followed by vomiting equals bad things. We went for an emergency CT scan of Harrison's head which did not reveal anything obvious, meaning no huge growth or fluid build up however, there was enough concern to warrant further investigation and we headed for an MRI of his brain, which revealed by 7 pm, Tuesday evening, that Harrison had new disease in his head, early leptomeningeal disease to be exact, which means that the thin lining that covers the top of the brain shows evidence of Neuroblastoma. It is small but it is there. By the time the news had arrived Harrison had been in pain and shutting down for several hours. He was very sleepy but was oriented. There was major concern. By Wednesday, things had gotten much worse and Harrison was still in a sleeping state and there was much concern that this might have been the beginning of the end of our journey. Everyone was in shock. We were advised to call our family, so within hours Mike, my sister, my future brother-in law, aunt, uncle and sister-in-law few into NYC. By Wednesday night we were bracing ourselves for the worst moment of our lives and were admitted to M9 (the pediatric floor).

Throughout this 5 ½ year journey I have always had faith that I would be lead to make the choices that were best for Harrison, always trying to honor him in the process of saving his life. On Wednesday night, distraught beyond our wildest dreams Mike and I prayed. We prayed for the strength to let him go if that was what he was choosing and we prayed for peace, we prayed for the pain to stop and for suffering to be little and we prayed for the strength to see the signs if he, instead, chose life. Harrison slept until Thursday, from Tuesday until Thursday he slept, we cried and we prayed. We knew that if Harrison was done fighting we would honor him but we also knew that if he showed us that he wanted to stay and carryon that we would support that too. And later last night, Harrison woke-up announced he was hungry, asked for something to drink and chose, for this moment, life.

Things change so quickly. I am so grateful to have my Harrison back. For 2 full days I told him how much I loved him and got no answer, for 2 full days he never called my name, for 2 full days he never touch his favorite brown bear and for 2 full days he slept. I wept last night for joy when I heard “mom I can’t tell you how much I adore you because it is too much.” I wept to see my Harrison sitting up asking for food and drink and to do a Lego.

So, word got around quickly that Harrison woke-up and everyone came to see him, the doctors the nurses the team and everyone is smiling. Harrison’s situation is severe and medically speaking this is a battle we will not win and medically speaking it could be just a few days to a few weeks to a few months but medically speaking no one can explain the last 2 days or the turn around in the last 24 hours.

He has so little recollection of the last few days he was shocked to hear that he had been sleeping for 2 days but asked me why I had cried so much, so somewhere in there he heard and he saw what was happening.

This journey has been about living present moment and for the last 5 ½ years we have never lived and though tomorrow would be our last day and we will not live like that now. For whatever reason Harrison has, today, chosen life and so will we. So, we finished our 5 day course of chemo today and Monday we will begin radiation to Harrison’s left flank and to his total brain. The radiation should help with pain control and should hopefully prevent a seizure or bleeding in the brain while shrinking the tumor cells and if Harrison continues to give us signs that he chooses life will we continue to honor that. If the time comes when he chooses another path then Mike and I will again pray for the strength to not think of ourselves but to do what we have always tried to do, what is best for Harrison, honoring the child, the light and the love that he is.

I respect and honor my son more than any person I have ever known. He is the most beautiful soul and teacher and light. Mike and I are blessed and humbled to be his parents and to share his life wherever it takes us.

These last few days have been very painful and very private. I have decided that I will not publicly chronicle the rest of our journey if it leads us back to that place. I will, however, provide periodic updates about how we are doing on the path that Harrison continues to choose. All of you, those of you that have loved, prayed, fought, cheered and cried along with us for all of these years deserve to know how he is so I will of course do my best to honor that too. Mike and I cannot thank you all enough for all the prayers, notes and well wishes we have received over the course of the last few days. It has meant everything to us to know that people across the globe have joined together for the purpose of helping our precious child. And for those who do not believe in the power of oneness need only to look at this above picture of Harrison [taken this evening]. Please know that if you feel that your single prayer did not help it did because you were not alone and together you all helped change the course of the last few days. From the core of this mother’s heart…I say thank you…thank you…for caring enough.

With love and never ending faith in miracles,
Gina

Tuesday, September 11, 2007 1:35 PM CDT

When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
~Harriet Beecher Stowe


And waiting for the tide to turn is just we plan to do…

Just a brief note to let you all know that, Harrison is hanging-in there. In fact, I would say he is better than just hanging-in. We have been checking counts this week and patiently waiting for those stem cells to give way to the changing tide. It is only day +7 and his white count is already improving. We are hoping by day +10 to see his platelets on the rise. Until then, we will visit clinic every few days to support Harrison’s counts with transfusions and try and fill the in-between time with fun. We did a pretty good job of it this weekend when we all went crabbing at the Jersey Shore and then out for one of Harrison’s favorite meals—Japanese food!

I will update again when a treatment plan has been devised. Until then, please continue to pray that Harrison remains safe from progression while we wait for those counts to rise.

With hope,
Gina

Tuesday, September 4, 2007 8:40 PM CDT

Most people never run far enough on their first wind to find out they've got a second.
~William James


And a second wind is just what we got today…

As most of Harrison’s second grade friends entered the doors of their NEW school campus for the first time today, making their own little piece of history, Harrison too gave way to a new entry in his personal memoirs [for which I am the scribe] when he, after over 5 years of continuous treatment, at 1:20 pm today received his first peripheral stem cell transfusion.

As I looked back at last year’s journal entry for September, I found myself writing similar thoughts regarding the magnitude of the first day of school, for his then First Grade friends as they embarked on uncharted waters outside the shelter of Kindergarten, while Harrison revisited the well-beaten and too familiar path of “high” dose chemotherapy from many years past, leaving the safety of the “lower” dose world behind. This Fall, however, the tone and feeling is much more positive, as we look forward to today as a new beginning in our lives, as we fight to continue living with Neuroblastoma.

Since my last update, Harrison has completed all of the testing work-up to determine where he stands with regards to disease burden, post cycle 4 of radiolabeled 3F8 antibody. And the results were less than what we had hoped for. It appears Harrison had no response to this last cycle of therapy. In fact, there is some question as to whether or not some areas actually look worse while some look stable or slightly better. Again, it is a mixed bag with Harrison.

What we do know is that we have an energetic 8 year-old whose spirit is unmatched and undaunted and today he got his second wind...

To say that he has been excited all week to receive his stem cells back is, in fact, a gross understatement. Determined that this will “boost” his marrow, he is furiously creating and praying for healthy new cells. What could be stronger than the will and devotion of a child unto himself? And the faith that he has to make anything happen? Dr. Modak said the goal is “ROBUST” marrow so robust marrow it will be!

As for the future, it is just one day at a time. It, most likely, will take a few weeks for Harrison’s bone marrow to show the fruits of its labor. So until then, we will sit tight, continue transfusions as necessary and pray that Harrison stays safe from disease progression.

Please continue your prayers for Harrison and join us as we help him create healthy, robust and strong marrow.

A big thank you to Maureen, Harrison's number one nurse for again being part of our History in the making. Maureen has been there since his first cycle of chemo in NYC, back in 2002 and has taken excellent care of Harrison for many years. And to Linda, our favorite nurse practioner for her constant care and knowlegde and to Dr. Modak, who has been leading the way on Harrison's primary care.
We are grateful for your compassion and your dedication.

With new hope,
Gina

The new pictures are from this past weekend when Harrison enjoyed a play date with is friends Luke and Victoria.

Friday, August 24, 2007 4:47 PM CDT

When it is dark enough, you can see the stars.
~Ralph Waldo Emerson


Well, it has been a few weeks since my last update and time has flown by. We actually got 2 weeks to come home to NC (the longest we have been home since December of 2006—YIKES!). Our time in the south is quickly coming to a close, as Harrison, his Grandma and I will be heading north this Sunday. It has been an interesting time home trying to squeeze in some last minute summer fun between 3 trips a week to the clinic for transfusions. Dr. McMahon and his nurses (Kristen) were terrific and took really good care of Harrison while we were home.

As you can see from the pictures, he managed some fun in the sun with Logan and his pal Rachel. Rachel’s family just built a beautiful new home and invited us over for the day to relax by the pool. It was a great day and Harrison really enjoyed his friends, as did I. The remainder of his days were spent tutoring with his new second grade teacher Mrs. Fuller. He was sad to leave the wonderful Mrs. Choate but Mrs. Fuller is terrific too and Harrison really likes her and he is looking forward to the second grade.

There is really not that much else to report. Harrison’s blood counts are really suffering [although you would not know it looking at him while he swims, jumps and plays] and he is in desperate need of a stem cell infusion, which should be coming soon next week when we get to NYC. In addition to beefing up those blood counts, Harrison will begin a whole week of scans/tests starting Monday the 27th. These tests will, of course, evaluate Harrison’s disease status and enable us to formulate a new plan of attack! I fear he will miss the first week of school AGAIN, but hopefully once a plan is underway he will be able to join his friends at The Davidson Day School.

That’s all for now—sorry it’s so brief. I just wanted to let everyone know that we are ok and Harrison is doing well. We are praying and hope you will join us as we ask for good results and that Harrison continues on the path towards a life free from cancer.

I will update when the results roll in…until then be well.

Gina

Tuesday, August 7, 2007 11:09 PM CDT

Just your average, ordinary, everyday superhero…
—Smash Mouth


One of Harrison’s most favorite songs…do you think they wrote it about him?

Well, since I last wrote one very extraordinary thing happened…no we still have Neuroblastoma…but we did go on a mini vacation for the first time since June of 2006!

It was our first real adventure of the summer, it was only 4 hours from NYC and it was only 3 days BUT it was TERRIFIC!!!

Harrison, Mike, me, Grandma and Grandpa all met in Boston for the weekend, where my Uncle Robert and Aunt Mary hosted us for a fabulous weekend filled with fun adventures, beautiful scenery, good food and lots of love.

We arrived on Friday night, after a quick trip to clinic that afternoon to “tank-up” on platelets for the weekend. On Saturday, our first stop was the Boston Aquarium where we saw the I-MAX film on Whales and then we headed out of the Boston Harbor for a 4- hour Whale-Watching expedition 30 miles off the coast. It was the first time any of us had been Whale-Watching and it was amazing. It was the most incredible boat ride through the Massachusetts Bay, cruising past the outer-islands sprinkled with lighthouses protecting the sea traffic from their rocky shores. The weather was just perfect for a day at sea and everyone was in high spirits in anticipation of the “sightings.”

We did have several sightings of at least a dozen Humpback Whales, in an area called Stellwagen Bank. It is a National Marine Sanctuary where Humpback Whales come to feed in the summer months. These same whales migrate to the waters of the Caribbean during the winter months for breeding. Harrison was beyond excited about the trip and really enjoyed himself— and not an ounce of seasickness. After all, what’s a little “motion of the ocean” when you have had 30+ cycles of chemotherapy! In fact, he was so taken with the whole whale thing that he adopted a whale name Coral. The Whale Center of New England is a private non-profit organization that studies and protects marine mammals in the Gulf of Maine. Harrison’s adoption “pledge” goes to the protection, research and conservation of whales. If you ask him he just says, “I helped save a whale named Coral.” And that is good enough for us!

Later that night, we enjoyed a wonderful meal in Chinatown. Harrison loves Asian food and had a blast sampling all of the very authentic dishes. The whole day was a tremendous success and we all slept like babies after a day of fresh sea air!

We woke Sunday morning to spectacular New England summer temperatures, which beckoned another day of outdoor activity. So we headed North, up the coast of New Hampshire and into Maine. The New England shoreline is so different from the coast in the South. The ocean seems much more volatile and angry, violently smashing against the jagged steep cliffs. It’s dramatic in a way that draws you in and swallows you up whole. The towns engulfed by these rock- swelled precipices are the antithesis of their surroundings. They are quiet, small and inhabited by a population of laid-back locals and tourists aimed at rest and relaxation. We drove through several of these quaint shoreline towns and ended up in the coastal town of Ogunquit, ME. We did the tourist thing, walking through the town, sampling the many shops filled with t-shirts, jewelry, art, ice cream and fudge. And, of course, landing at a Lobster Pound for dinner, where Harrison showed no remorse for personally picking his dinner and then allowing us to eat it! Again, it was a magnificent way to end a picture perfect weekend.

We, unfortunately, had to head back to NYC early Monday morning and into clinic for another quick filler-up on platelets. None of us wanted to leave and Harrison asked on the car ride home “when can we go back?” So watch out Uncle Robert and Aunt Mary you may get us back one more time before the summer is over!

When we hit the clinic doors Maureen (his favorite nurse) was waiting with “baited breath” to hear about the trip and Harrison gave her very vivid descriptions of all that he experienced. She was so happy for him and was so encouraging as he went on and on and on…Thanks Maureen, for always making him feel important and special.

For most families a summer vacation is a given for us it is a privilege. I was grateful that we were able to squeeze in at least one great summer trip for Harrison. When he talks to his friends they are conversations filled with talk of vacations to the beach, swim clubs, fishing, boating and fun in the sun. And now Harrison has a summer outing of his own to share and as soon as he got the chance he was on the phone with Logan giving all the details of his trip. It’s funny I found myself really excited to share the intimacies of our weekend with my friends too. I guess it was not just Harrison who really needed the time off. It was truly 3 days uninhibited by the limitations of Neuroblastoma, low platelets and scarce white cells. There were no signs or “sightings” of cancer in Boston!

So a huge thank you to Uncle Robert and Aunt Mary for hosting a weekend that far exceeded any expectations we had, to my Mom for the excellent road trip company and to Mike and my Dad for getting those last minute flights, making the family weekend complete!

In the way of medical news, there is little to report. Harrison is still being transfused 3 to 4 times a week. We are on day 13 out from the last cycle of hot 3f8 so we are just waiting for the next plan. A stem cell rescue is, I am sure, somewhere in our future but it is hard to say exactly when. At around day 21-28 (Aug. 20th) we will do yet another testing work-up and hopefully by then we will have a new treatment plan underway.
I will update when the new plan is in place.

Until then, be well and I hope you all are enjoying the summer at least half as much as we enjoyed last weekend.

With a renewed spirit,
Gina

Thursday, July 26, 2007 4:43 PM CDT

Juxtaposition: the act or an instance of placing two or more things side by side


So as the summer days roll on, our lives continue to be a juxtaposition of medicine and miracles as we strive to balance long clinic days with traditional summertime activities, 8 year-old style.

Shortly after my last update, Harrison began the testing work-up to determine the efficacy of cycle 3 of the “hot” 3F8’s with Avastin. It was a long week of testing and a week of a painfully slow trickling of results. However, during both of these weeks Harrison artfully managed to weave some play time in-between transfusions, G-shots, CBC’s and many blood draws.

As you can see from the pictures, Harrison, Luke and Victoria had a grand time playing PUTT-PUTT—I think even Tiger would be proud of how well everyone played! I was also able to enjoy 2 lovely dinners with my friends Denise, Jeff and Shirley who were not only wonderful company but truly excellent sounding boards as I muddle my way through yet another set of decisions with regards to treatment.

Yes, Harrison does have a way of presenting us with one conundrum after another—most of the results pointed to a response, FINALLY something good after months of “stable” disease, but [there is always a BUT] one lymph node was slightly larger; it, however, was the one node that was NOT MIBG avid! So, what to do?? Well that was another week of talks, debates and decision making…thanks to good friends and brilliant medical advice from his team we, in the end, decided to move ahead with cycle 4 of the trial. In fact, we are inpatient today receiving the treatment. And as it turns out the “suspect” node was hopefully due to a slight “funk” that was heard in the lungs prompting a quick dose of the z-pack.

Harrison is amazing in his ability to navigate life. He moves so gracefully from normalcy to the totally abnormal. Yesterday, just hours before being admitted to the hospital for “liquid radiation” treatment he was feeding the ducks by the apartment, playing army outside at the park and all the while discussing the movies he was going to watch while inpatient tonight. I wish I moved as beautifully as he does between events. He is already planning his weekend activities, for when his Dad and his Grandfather arrive tomorrow. He is truly a terrific little boy.

So, this chapter of treatment is coming to a close. The trial is written for just 4 cycles and Harrison has been the first in the country to complete all four cycles. He was the number 5 child to start the trial and the first to finish—another giant step for Harrison and for science. I hope this one step closer to a life without Neuroblastoma.

As for what lies ahead…most likely a stem cell transfusion. It has been over 5 years and Harrison has never used any of those precious stem cells. But his marrow is tired and is need of replenishing so this will be in our near future.

After that, more testing of course!! I will update when the tests are complete and a new plan is formulated.

I could not be prouder of Harrison than I am in this moment. He continues to rise above and do what is asked of him. While his friends are traveling for the summer, enjoying the beach, fishing, having play dates and attending summer camps Harrison remains full time in treatment fighting uphill all the way. I wish for a better life for him and pray that those days are a shorter distance away all the time. Until then, we will try to continue to juxtapose our days with medicine and miracles.

With love and hope,
Gina

p.s. for those of you wanting the medical version of the work-up here it goes:
The MIBG is "stable" with all the usual spots on the skeletal system (bilateral femurs, bilateral tibia, clavicals, pelvis etc...), the CT is actually improved on 1 node (gastrohepatic, which has been actually shrinking over the course of the last few months and is much smaller than when we started this therapy in March), larger on the non-MIBG avid node (left hilar) and stable on the 2 other nodes (left supraclavicular and left para-aortic)! BM's are at last all negative both the aspirates and biopsies!! This is the first time since last summer (before relapse)!!! LDH down another 12 points and within normal range (177) with 60-200 being normal. Harrison’s norm was always in the 160’s so we are in a good place with LDH and urine is lower with his HVA dropping 9 points but still elevated and his VMA is well within normal range.
The overall consensus was that he had a response to the last cycle or more specifically to the cumulative dose of the 3 cycles. Here’s to hoping that one more cycle will help even more!

Wednesday, July 11, 2007 8:10 AM CDT

Yes'm, old friends is always best, 'less you can catch a new one that's fit to make an old one out of.
~Sarah Orne Jewett


Well, it is hard to believe it has been nearly three weeks since my last update—where has the time gone? I guess it flies when you are trying to balance, cancer treatment, longs days of side effects, transfusion and yes the social life of your 8 year old! In-between the more horrific days of nosebleeds, transfusions and low counts we have been managing to keep Harrison busy and happy in a blaze of activity. The remarkable thing about children is that even while undeniably entrenched in a myriad of tragedy, they manage to find little slices of joy and happiness; like spending time with friends during the free days from the hospital.

Harrison and I have been so fortunate, in so many ways during this long and incredible journey. And one of the most amazing things is the friendships that have touched us along the way, both, at home and in New York. The friends that Harrison and I have made, those that share our life with Neuroblastoma also share a bond from our hearts that is like no other. That double life that is so hard to lead, that makes you feel as though your always straddling a tight rope takes a step towards less difficult when you share it with friends, who for better and for worse, are just like you. And even though those friendships are new in comparison they sure do feel like a fit from a lifetime. I know the value and the blessing of that and it was clear to me, that this past weekend, as Harrison shared some time with 2 very wonderful fellow 7 year-old neuroblastoma survivors, that he too intuitively understood the bond that words could never define. He was so at ease with Bryce and Luke that it seemed as though they were not 7 and 8 but 77 and 88 and had shared and experienced more in their short lives than most who live to 100 ever will. There was such a juxtaposition of childhood innocence and ancient wisdom that was simultaneously, both, wonderful and startling. I found myself feeling that same connection with their beautiful mothers. A connection so tender that it should have taken years to nurture but conversely was woven in just months from one common thread—saving the lives of our children. I am grateful beyond words for the unspoken and shared understanding that I have with these mothers, these women that I feel privileged to call my friends.

He also enjoyed an action-packed day at the Museum with his classmate from North Carolina, Jakob, who was vacationing with his family in NYC! It was great for Harrison to spend time with friends from both of his worlds.

So although the days of seeing summer blockbuster movies [Transformers and Surfs Up], a quick trip to The Hamptons, a day at The American Museum of Natural History, lunch at the Four Seasons, ice cream at FAO Schwartz, sailboats in Central Park and BIG pasta dinners have all been peppered with blood transfusions, managing side effects and low cells counts they are still good days, in a good life, and they are days richly blessed with friendships both old and new that, no matter what the future holds, are tide together for a lifetime.

We are heading into test week [MIBG, CT bone marrows and urine] to determine the efficacy of cycle 3 of the radiolabeled 3F8’s and Avastin. I expect results sometime next week and will post as soon as they become available.

Harrison’s spirit continues to soar as he faces each new day. Our greatest hope is that he remains able to make each day a GREAT DAY and that he is given the strength to travel wherever this journey leads him.

In friendship,
Gina

Friday, June 22, 2007 7:53 PM CDT

Faith is taking the first step even when you don't see the whole staircase.
~Martin Luther King Jr.


All is well, sorry for the delay in updates it has been a busy 2 weeks. Here is what’s been happening with us since we arrived back in NYC, after a few days home.

Wednesday night, Dr. Cheung gave a very informative talk for parents and caregivers of children with Neuroblastoma. I was fortunate enough to attend. Along with an array of information about the disease itself, currently available treatments as well as future treatment possibilities, Dr. Cheung openly and honestly admitted that sometimes doctors are just making “their best guess” regarding the most promising therapy options. He suggested that although decisions are made built from solid science that “there is no crystal ball” to see if those choices are the “right” ones.

Oddly enough, I found this strangely comforting. It would seem that if the worlds leading researchers and primary care physicians are admittedly making “good educated guesses” then we, as parents, should perhaps panic but I did not feel panicky. Instead, what I found reassuring was that, in the hours I have spent thinking, stressing, researching, reading, yelling, crying and agonizing over “the right thing to do” or “the right treatment choice” for Harrison, I have been in good company. Perhaps it was the feeling that if even they are unsure of the right or correct choice then surely I cannot make a wrong one [?]. It is about your best guess, your best feeling, your best information, your best knowledge of your child and of course a huge leap of faith, even when the whole staircase is clearly not within your view. I left last night with a renewed sense of determination to keep making “my best guesses” for the life of my child.

So for now, we are hoping that our leap of faith has paid off. It is hard to look ahead, predict the future or stress the past; all we really have is the present moment. So we find joy with our sorrow, life within the constant fear of death, moments that we stretch hoping for eternity and faith that for today we are walking up the whole staircase.

We recently adorned those leaping shoes…

Harrison has completed cycle 3 of Radiolabeled 3f8/Avastin. The treatment went smoothly and Harrison was released on Friday (6-15-07) afternoon and returned to the apartment tired but well, where Logan had been patiently waiting for him since Wednesday evening.

Harrison has been having his ups and downs. He fluxes between feeling tired and vomiting to feeling energized and eating! I think this cycle hit harder than the last 2 but that is to be expected. Life is full of ups and downs the trick is to “enjoy” during the “ups!” So when our time came to seize the day we did just that and the boys swam, went out for dinner and even had a private birthday celebration for Logan, who turns 7 next week.

The next few weeks will be spent doing the usual 2 to 3 clinic runs per week; receiving transfusions and generally monitoring Harrison’s health. In about 4 weeks we will do yet another “work-up” to see the extent of Harrison’s disease and if cycle 3 made any impact.

Please continue to keep Harrison in your prayers.

With love,
Gina

Monday, June 11, 2007 2:10 PM CDT

Hello everyone, this is just a quick update to let you all know that Harrison is fine. We finished up “test week” last Monday and all the results are finally in. Most of the tests demonstrate a stable disease burden. There has been some shrinkage of a gastrohepatic node and for the first time since re-occurrence Harrison had one negative bone marrow biopsy. He is still receiving transfusions about twice a week and G-CSF a few times a week but so far no stem cell re-infusion has been necessary. All this, we are considering to be good news for us!

With positive results the team was feeling good enough to let Harrison head home to NC for the first time since March. We made it home for the last day of school on Friday and he joined his class for their final celebration as first graders. It was a terrific day and Harrison was just thrilled to be among his peers. We have had a great weekend, enjoying friends for cookouts, swimming and Harrison has had a ball with his boyfriends playing and being active. We feel refreshed and ready to head back to NYC tomorrow. It was only a 5 day break but we definitely made the most of it!

So, stable scans, no stem cell rescue and no HAMA all equal up to a vote for cycle 3 of radiolabeled 3f8 antibodies w/Avastin. I am nervous about cycle 3 and how hard it is hitting his bone marrow but we appear to have some good results so we are taking the plunge Wednesday.

My sister-in-law Sheila and my nephew Logan are heading back with us to NYC, which will make the trip much less stressful for Harrison. After all, if you have to do anti-cancer treatment it helps you have your best friend and soul mate along for the company and Logan and Harrison are just that to each other. I am happy to have Sheila, my best friend along too, and it gives Grandma some time off for good behavior [smile].

I will update again in the next week or so to let everyone know how we did with cycle 3. Until then please keep Harrison in your prayers and our little friend Adam too; he is in NYC having his first surgery with the wonderful Dr. LaQuaglia.

With gratitude and hope,
Gina

Thursday, May 31, 2007 8:30 AM CDT

Do what you can, with what you have, where you are.
~Theodore Roosevelt


We hope this update finds you and your family having had a restful and happy holiday weekend. Ours was quite something...we took a BITE out of the BIG APPLE!

Among the smaller challenges, in living life with cancer, is keeping your 8 year-old happy and emotionally healthy so he will remain strong in spirit, mind and body. Our family has rallied around the philosophy that we must define cancer within our lives and thwart its attempts to define us. So, befitting Memorial Day, new troops arrived for the holiday weekend to “transfuse” the old and tired troops with massive doses of energy, strength and high spirits.

Several trips to the airport later and Grandpa, Mike, Auntie Erin, Uncle Jason and Emma (my niece) all arrived safely and ready to go… First stop on the whirl-wind tour “The Statue of Liberty.” Harrison never refuses an opportunity to take visitors on his own personal tour of the Statue [10 minutes on the Ferry ride over, 15 minutes touring the “history” inside the Statue, 20 minutes at the fast food stand eating chicken fingers (YUCK) and 30 minutes at the first gift shop and of course 15 minutes at the second gift shop on the way back to the 10 minute return Ferry ride!] Next stop, The American Museum of Natural History with even more gift shops!! The day at the Museum was great. There were several terrific special feature exhibits as well as several excellent special films at the Planetarium and IMAX theatre. Later that night was dinner on the Hudson at a beautiful restaurant with a terrific view of lower Manhattan. On Sunday, the adults collapsed at the pool while the kids swam and enjoyed themselves before heading out to a family cook-out! Monday entailed a quick trip to the American Girl Doll Store [more shopping!] and a lazy afternoon at the pool. All in all, it was an amazing weekend and Harrison had a blast! I must say that I had a terrific time too, not much rest but a great family weekend. We were sorry to see Monday evening come and all the planes go with our family aboard.

It is weekends like this one— a little vessel of wonderful adrift amongst the hurricane of cancer— that keeps us going. It is weekends like this one that steady us for the days and weeks ahead and all that they might bring. It is weekends like this one when Harrison sets the agenda and not his disease. It is weekends like this one that send us into test week a little braver, a little less terrified and a lot more hopeful. So, when people ask me, “how we live with cancer and have normal lives? I tell them that normal is in the eye of the beholder; it is how you define it not how it defines you. We are doing what we can, with what we have and we are doing it right where we are!


The pictures speak for themselves. Harrison looks and feels terrific. Counts are falling but our courageous boy is definitely still standing. Transfusions and G –CSF shots are becoming more of a daily ritual but Harrison is managing nicely. The work-up/disease evaluation starts this Friday (CT scans and spinal MRI), Saturday (MIBG) and Monday (Bone Marrows) to determine the efficacy of cycle 2 of the radiolabeled 3f8/Avastin trial. Please keep Harrison in your thoughts and prayers as we move forward living with Neuroblastoma. And thank you to everyone who has donated blood and platelets…you are truly helping to keep this beautiful child healthy, full of energy and living fully everyday.

I will update after scans, with both results and the treatment plan.

With love and gratitude for all the weekends like this one,
Gina


Tuesday, May 15, 2007 9:54 AM CDT

Either the well was very deep, or she fell very slowly, for she had plenty of time as she went down to look about her and to wonder what was going to happen next.
—Lewis Carroll from Alice’s Adventures in Wonderland



On Saturday I fell down the rabbit hole…it was a beautiful day in NYC this past Saturday, Harrison was feeling very well and Mike was in town so we headed to Central Park. Our intentions—to meet up with several other Neuroblastoma families, the team doctors and dozens and dozens of supporters to participate in “KIDS WALK FOR KIDS WITH CANCER” and afterwards take in the Central Park Zoo. The realities of traffic, waking-up late and blocked Manhattan streets going one way the wrong way prevented our arriving on time to start the walk…so frustrated and saddened about missing the “start” we hung around, waited for the walkers to return and in the interim tripped into the rabbit hole.

A girlfriend was visiting from NC, on a mom’s weekend with 10 other mom’s from the Charlotte area. They had stopped by “Tavern on the Green,” as all good out-of-towners do for the quintessential drink and a “look see” just to say you did it while you were in NYC. The “walk” coincidentally gathered at a site directly across from this NYC landmark. The circular paved entrance was crowded with horse-drawn handsome cabs with brightly colored cloaks and costume- clad drivers. It resembled more a fairy tale from a time of Princes and Princesses than a cosmopolitan park in the year 2007. The back drop of runners, babies in joggers, ball players, Frisbees and ball-chasing dogs abruptly stifled the momentary lapse into fantasy. Still, pulled by the lure of a few moments of the fantastic I joined my girlfriends. Walking across the threshold of “Tavern’s” doors, that were well guarded by a dashing gentleman in tails and a top hat whose promise to defend the entrance against the normalcy that lie outside was too tempting to resist. While the soldiers against cancer marched I slipped down the rabbit hole.

The courtyard was beautiful, in the way that postcards are beautiful—it seemed almost impossible. Trees that limped with a kind of sadness just enough to canopy the richly dressed guests cast a shadow like looking through a camera lens that was slightly out of focus. Soft pastel paper lanterns hung from their branches complimenting the delicate pink table clothes and white iron chairs. It was whimsical and fantastic and there was not an ounce of cancer in the sanctum of its walls. There were ladies in bright going-to church-hats and matching outfits, drinking equally as colorful drinks—a rude contrast to the children in shorts and t-shirts walking and running to beat the beast. I sank within the womb of the absurd, looking around but not really hearing anything. I imagined the pounding of little sneakers on the pavement.

An hour later, my shirt and hair dusted with petals from the little white flowers that fell like confetti from the trees in the courtyard of Tavern on the Green, I emerged through the large glass door propped open by the coat-tailed/top hat doorman. The handsome cabs were still in the foreground with reality in the background. The runners and walkers had returned and so had I to my real life. I bid farewell to the mom’s who had whisked me away from my sorrow, even if, just for an hour and set off to embrace the other mom’s in my life whose love and courage keep me more firmly rooted on the path that has become my journey. To all the wonderful moms in my life, especially to my own beautiful mother—my role model—Happy belated Mother’s Day.

I am sorry to have arrived late and missed the KIDS WALK but I am grateful for the hour I spent as “Alice in Wonderland” for it reaffirmed that I would choose no other life that the one I share with my beloved Harrison.

And as you can see from the pictures, Harrison, whilst on the other side of the park with his dad, had his own adventures enjoying the Central Park Zoo and all its lovely creatures. Harrison’s day was truly wonderful, as he put it, “it was one of the best days of my life with my dad!”
I am glad his reality is more balanced with frequent infusions of THE FANTASTIC!!

So life really is a series of events that are normal, absurd, fantastic, average and extraordinary all strung together in rungs that are endlessly intertwined. Somehow we all connect in this intricate web affecting those we have never even met. And even in those moments of sadness, frustration and hopelessness there is light, awareness and joy.

It has been an emotional week with Mother’s Day and today [our 5 years since diagnosis]. I having feelings I cannot begin to pen so I will just leave this entry as I came to it, with profound gratitude for my life and for Harrison’s.

He continues to remain well. We are making visits to clinic 3 times a week for labs and transfusions as needed. Our plan is to just keep Harrison safe, happy and healthy. Of course, I will update with any new events that may arise. Until then be well…

With love and gratitude for that which we have and for all that we dream of,
Gina

Tuesday, May 8, 2007 7:35 PM CDT

I am more and more convinced that our happiness or unhappiness depends more on the way we meet the events of life than on the nature of those events themselves.
—Alexander Humboldt


Hello everyone, I hope this update finds you all healthy and happy. Well, after several weeks of testing, debating, talking and more deliberating/debating, we have chosen to move forward with another cycle of TARGETED 131I-3F8-MEDIATED RADIOIMMUNOTHERAPY AND BEVACIZUMAB (please see March 16th entry in journal history for the link to info).

Careful consideration has been given to the current and future state of both Harrison’s lungs and heart and this therapy was the agreed upon “good choice” for the moment. These are difficult decisions to make—trying to save Harrison from a life-threatening cancer while preserving his organ function, after 5 years of an incredible fight. These are challenges I would be all too happy not to have bestowed upon my 8 year-old but these are the “events of life,” for us anyway.

So, after this unbelievably tough decision was made we moved very quickly to get all the various departments organized and we checked into the inpatient floor, this past Sunday evening for treatment Monday and today.

But before we hit the hospital doors we took Harrison for some last minute outdoor fun and hit the Wild Safari Park at Six Flags Great Adventure, on Saturday. And as you can see from the new pictures, Harrison had a terrific time enjoying the animals and the Exploration Station, where he got to pose with a live snake, a giant tortoise shell and an elephant skull.

Harrison took the news of doing another cycle of the “hot” 3F8 rather well. He was not thrilled with the inpatient stay but never once complained about the treatment. When Dr. Modak came in yesterday and asked if he was ready to go? Harrison replied, “Yes I am ready” and when we asked him if he was in any pain? He replied, “no but I will tell you when” and about 20 minutes later he looked very calmly and coolly at Dr. Modak and said, “I am ready now for my medicine.” He was referring to the narcotic pain meds that they use to rescue the children from the gripping pain that the 3F8 causes. Everyone commented on how brave and mature Harrison was. And yes I was so proud of him; my heart is close to bursting with devotion, love, pride and agony for my precious Harrison. But truly, I would give anything for a future for Harrison where the application has no boxes to check that call for acts of courage, stoicism, bravery or maturity. Harrison’s whole life has been a testament to behavior well beyond his years. Most parents can’t wait for their children to mature, become responsible and “adult-like” but one of my deepest hopes is that someday he can just be a reckless, wild and carefree kid.

Harrison finished the second portion of the treatment today around 2 pm and we are now back at the apartment, comfortable, resting and waiting for the American Idol-- Harrison is a huge Blake fan!!


So, my amazing child continues to rise-up and meet the events of his life, choosing happiness every chance he gets! He is my love, my teacher, my life.

Thank you for checking-in and for leaving those gracious and warm notes in the guestbook.

With hope,
Gina

Saturday, April 28, 2007 7:25 PM CDT

Feed your faith and your fears will starve to death.
~Author Unknown


I just wanted to leave a brief note to let you all know that Harrison continues to remain well. We are still in the process of formulating a treatment plan. The delay has been due to some complications we are having with regards to Harrison’s lungs and cardiac activity. Nothing is drastically wrong, but both his heart and lungs have experienced some damage from the last 5 years of constant treatment. So, to minimize further harm to these organs we have enlisted the expertise of a fantastic pediatric pulmonologist and a pediatric cardiologist, both at Cornell Medical Center in New York City.

These doctors are running a series of tests to asses the current condition of his lungs and heart and are working very closely with myself and his oncology team to provide effective anti-neuroblastoma treatment options that will also be safe for his whole body.

Although, this all is very scary and new territory for us Harrison remains unfettered through it all. He continues to be full of life, energetic, happy and strong.
This next week will be spent doing further tests, assessing our situation and making a plan. I will post as soon as we have news.

Thank you for your continue care and support of Harrison. And a special thanks to my family here in NJ—Skip, Michael and Jim who, in the last few weeks, have donated red blood and platelets for Harrison—he is definitely benefiting from your life-saving gift.

Always with hope,
Gina

p.s. check-out the great new pictures of Harrison's First Grade Class at the Davidson Day School who, through a bake sale, raised over $200.00 for the Harrison Nichols Foundation to aid families in their fight against Neuroblastoma-- WAY TO GO FIRST GRADE!

Sunday, April 22, 2007 10:52 PM CDT

If you don't risk anything you risk even more.
—Erica Jong


Well, we finally got a break…in the weather that is…not so much of a break when it came to Harrison’s disease evaluation.

As it turns out, Harrison’s disease burden remains stable or “grossly unchanged” from the last set of tests in February. Although, we had hoped that enrolling Harrison in a new trial would foster a greater degree of disease resolution we remain eternally grateful that the neuroblastoma has not progressed and that Harrison continues to feel really well. His courage and grace always amaze me. How lucky I am to live everyday with my hero, my son, my light.

In the last nearly 5 years, we [Harrison and our whole family] have done everything humanly possible to “beat” this disease before it has beaten our little boy. But now, nearing our 5 year anniversary since diagnosis, our family is shifting our philosophy. Time has always been the enemy—how long do we have with Harrison, how long can we keep this monster at bay, how long…how long…how long… when time really has been our alley not our enemy. Harrison has been living with neuroblastoma for 5 years and we are focusing on “living with neuroblastoma” for AT LEAST the next 5 years.

As you can see from the pictures, Harrison is doing beautifully. We took advantage of those good feelings and had a wonderful weekend, enjoying the spring weather and the warm company that Mike and Grandpa provided, when they flew in on Thursday evening to join us. We headed to the Jersey Shore on Saturday where Harrison showed neuroblastoma exactly how he intends to live with it; by playing, laughing, running and creating with every ounce of his mind, body and spirit! So watch out NB we are prepared to hang-in there with or without you for a long long time.

We have not formally decided on the next course of action. Harrison did a remarkable job of tolerating the trial and because of that along with “no progression of disease” and a negative HAMA does qualify for a second cycle on the trial—we are working on the details of a treatment plan and I will post soon with regards to that plan.


Thank you to all of you who have been praying for and sending love to Harrison. I know I have said it before but this journey would be much longer, much lonelier and with much more fear if it were not for all of you walking with us. Please continue to keep Harrison in your thoughts and prayers, as his life continues to be one abundant in hope, courage and blessings.

As always, with hope,
Gina


Sunday, April 22, 2007 10:52 PM CDT

If you don't risk anything you risk even more.
—Erica Jong


Well, we finally got a break…in the weather that is…not so much of a break when it came to Harrison’s disease evaluation.

As it turns out, Harrison’s disease burden remains stable or “grossly unchanged” from the last set of tests in February. Although, we had hoped that enrolling Harrison in a new trial would foster a greater degree of disease resolution we remain eternally grateful that the neuroblastoma has not progressed and that Harrison continues to feel really well. His courage and grace always amaze me. How lucky I am to live everyday with my hero, my son, my light.

In the last nearly 5 years, we [Harrison and our whole family] have done everything humanly possible to “beat” this disease before it has beaten our little boy. But now, nearing our 5 year anniversary since diagnosis, our family is shifting our philosophy. Time has always been the enemy—how long do we have with Harrison, how long can we keep this monster at bay, how long…how long…how long… when time really has been our ally not our enemy. Harrison has been living with neuroblastoma for 5 years and we are focusing on “living with neuroblastoma” for AT LEAST the next 5 years.

As you can see from the pictures, Harrison is doing beautifully. We took advantage of those good feelings and had a wonderful weekend, enjoying the spring weather and the warm company that Mike and Grandpa provided, when they flew in on Thursday evening to join us. We headed to the Jersey Shore on Saturday where Harrison showed neuroblastoma exactly how he intends to live with it; by playing, laughing, running and creating with every ounce of his mind, body and spirit! So watch out NB we are prepared to hang-in there with or without you for a long long time.

We have not formally decided on the next course of action. Harrison did a remarkable job of tolerating the trial and because of that along with “no progression of disease” and a negative HAMA does qualify for a second cycle on the trial—we are working on the details of a treatment plan and I will post soon with regards to that plan.


Thank you to all of you who have been praying for and sending love to Harrison. I know I have said it before but this journey would be much longer, much lonelier and with much more fear if it were not for all of you walking with us. Please continue to keep Harrison in your thoughts and prayers, as his life continues to be one abundant in hope, courage and blessings.

As always, with hope,
Gina


Sunday, April 15, 2007 4:24 PM CDT

Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.
~Lin Yutang


I hope this update finds you all well and with a happy and healthy spring holiday behind you. Our Easter was very nice and Harrison enjoyed his “Big Surprise.” As you can see from the pictures we took a very impromptu trip to Washing D.C. for the long Easter weekend.

Harrison completed day 15 of the trial, with his second Avastin infusion (Friday, April 6th). All went well and later that evening we picked Mike up from the airport in NJ to make the 3 ½ hour drive to D.C. with us. We arrived safely and Harrison was so excited to see D.C. and of course the even bigger surprise was that my nephew --his ‘partner in crime’-- Logan was meeting us there along with my sister-in-law and brother-in-law. The boys have been studying many of the U.S. Landmarks that are housed in D.C. in Mrs. Choate's and Mrs. Myers's first grade class and were beyond excited to see them up close and personal. They had a great time despite the cold weather; it snowed on Saturday while we were at the Washington Monument! And of course, the magic of the Easter Bunny lead him right to our hotel room, on Sunday, and the boys had a great morning.

Harrison felt a little under the weather Sunday evening so we decided not to ‘push the envelope’ on a good weekend and we started back to NYC. As it turns out, his counts were quite low by Tuesday (he received red blood cells and platelets) and he had a few days of low grade fevers, from what we now know to be a nasty ear infection. It’s funny, he has never had a “run of the mill’ ear infection and after testing everything we could find from blood to urine I have never been more grateful for such a simple diagnosis treated with just antibiotics.

He seems to be on the road to recovery this weekend and will begin the big ‘scan week’ on Monday to see the results of cycle 1 of the phase I trial of 3F8-Mediated Radioimmunotherapy and Bevacizumab. We have 4 days of testing this week—Monday, MRI of spine; Tuesday, CT scans of chest, abdomen, pelvis, head, neck and orbits; Wednesday, MIBG; Thursday, bone marrow biopsies. And in-between blood and urine tests to help with the extent of disease evaluation.

So far, opinion has it that Harrison has tolerated the first cycle of the trial very well and as long as the tests demonstrate ‘no progression of disease’ he would be a candidate to continue onto cycle 2 with the trial written for a maximum of 4 cycles. He has only required 2 transfusions and his white count has been holding without any artificial support.

I will be sure to post as the results become available and a plan formulates. Please keep Harrison in your prayers this week and join our family as we walk the road that Harrison has paved with love, hope and faith.

With never ending hope,
Gina

Tuesday, April 3, 2007 7:31 PM CDT

Sometimes I’ve believed as many as six impossible things before breakfast.
—Lewis Carroll, Alice in Wonderland


As you can see from the pictures, Harrison is doing just fine. We were able to get some time in with the Easter Bunny this weekend, along with an Easter Egg Hunt!!

We went to clinic yesterday and counts are still holding nicely on their own—so no transfusions! WAY TO GO HARRISON!

Friday will be day 15 and Harrison will receive his second dose of Avastin. We are hoping for an event-free day on Friday and a good weekend. Mike will be joining us for the Easter weekend and we have a surprise in store for Harrison but you will have to check back with us after the weekend to hear the details!

Have a safe and Happy Holiday week!

Still believing in impossible things,
Gina

Tuesday, March 27, 2007 1:37 PM CDT

Challenges are gifts that force us to search for a new center of gravity. Don't fight them. Just find a different way to stand.
—Oprah Winfrey


Hello everyone, I just wanted to leave a brief note. Harrison is doing just fine, so far. He seems to be feeling well with no current side effects from the treatment. We went to clinic yesterday for labs and all his blood counts are also holding—so no transfusions yet. Harrison will be spending this week doing lab checks, transfusions if necessary and going on-line with his class, via his laptop. I will continue to update with any significant information…until then be well and be happy.

All the pictures are recent. The cover picture was taken this afternoon; Harrison went to the park during his morning break from school. As you can see, he looks terrific!

with hope,
Gina

Friday, March 23, 2007 8:25 PM CDT

I just wanted to let you all know that Harrison did very well today with the Avastin infusion. In fact, he did so well that this coupled with safe radiation levels had him discharged by dinner time. So, we are back at the apartment, happy, comfortable and most of all feeling well. Harrison seems to have done just fine with the initial stages of this treatment.
I will update again soon with any news.
Thank you for the prayers,
Gina





MARCH 23, 2007 9:23 AM

The only courage that matters is the kind that gets you from one moment to the next.
—Mignon McLaughlin

Thank you, Beth for sending me this inspirational quote. How perfect for our children.

And Harrison is the definition of the word courage. It takes courage, strength of mind, body and spirit and a whole lot of determination to take on your third Phase I Trial. Harrison made medical history yesterday, as he was the fifth child in the country to receive Radioimmunotherapy and Bevacizumab. It was evident by, what I call, the “white coat paparazzi” that was standing out in the hallway during Harrison’s treatment. When I commented to Dr. Modak “that Harrison was drawing quite a crowd,” he commented back that is very exciting cutting edge therapy and it is a rare chance for staff to see it happening.

Harrison admitted after the treatment that he was a little nervous with all the people watching and asking questions. This treatment was a little different than traditional 3f8’s. First, you are inpatient verses out; second, the room is decorated with 2 lead partitions one at the back of Harrison’s bed and one next to it that I needed to sleep behind to keep my radiation exposure risk lower; third, Dr. Modak plus one Dr. and 2 nurses from the nuclear med department administer the antibody itself in an IV pump surround in a lead container and lastly, the minute Harrison coughed, talked or moved everyone stopped talking, watched and wanted to know if he needed anything or was he ok. In the end he said, “it was kind of OK to have all those people interested in him.”

As for the treatment itself, it went rather well; it was a typical antibody treatment. The neuroblastoma parents reading this will understand that, a drug induced nap, moderate pain (only 1 full rescue needed), some vomiting, a slight rash, low blood pressure, and an hour of stomach massage followed by a evening of chatting, eating and game playing all qualifies this as a “good antibody day.” Everyone else reading this will just have to trust me that “it went well.” Dr. Modak was please with the treatment itself and was very optimistic, as are we or we would have opted for something else.

Harrison had a very good night, no medications, no fluids just some very sound sleep. This morning he is refreshed, chatting and ready to go home. Later today, the nuclear med department will come in and measure, with a meter, Harrison’s radiation levels that must be 7 or below to leave the hospital. He also needs to have the second part of the treatment today, the Avastin (Bevacizumab). So, if all goes well with that 90 infusion and his radiation levels have dropped low enough we could possibly be discharged this evening. And then we will be back in the morning for his first nuclear med scan to examine the placement and level of isotope in his system. This scan is NOT diagnostic, meaning that it will not tell if Harrison has responded to the treatment. That scan will be in about 3-4 weeks.

As for the weeks ahead, they will be spent here in NYC doing blood draws, monitoring Harrison and on day 14 from day 1 we will receive his second dose of Avastin and the first cycle of this trial will be complete. It will be followed with a full testing work-up around the end of April and a determination will be made if Harrison will continue onto the next cycle. The trial is written for up to 4 cycles.

I want to thank my family for their unwavering support through these last couple of weeks. I have leaned heavily on both my family and friends during this process and I could not have done it without you all. Mike, of course was here all week, my parents (Grandma and Grandpa) flew-in this week for the treatment. Aunt Sheila and Logan finally made it in last Saturday, with all the bad weather and left this morning and my Uncle Robert came from Boston to be here for Harrison, who just adores his great-uncle. And my sister, Erin, has been in constant contact by phone. I cannot express to you the love and support Harrison, Mike and I have. The countless emails, phone calls and blessings offered in the guestbook are amazing and we are so grateful to have so many people praying and sending love to Harrison. “Thank you” does not seem to cover our feelings of gratitude adequately enough.

I will continue to post as things progress on our end, until then be happy and be healthy…

With love,
Gina

Thursday, March 22, 2007 9:00 AM CDT

Just a brief update to let you all know that Harrison's treatment was postponed a few days. We needed to do some additional tests to make sure his heart and lungs were up to the challenge of this new treatment. As it turns out, they are and we are a GO for today, Thursday. I will try and post this evening or first thing tomorrow on the details. Thanks for checking-in. Please keep Harrison in your thoughts and prayers, that this is just the thing that Harrison needs to a lead him towards a life free from cancer.

with hope,
Gina



March 16, 2007


It is in your moments of decision that your destiny is shaped.
—Anthony Robbins


Well, it has been several weeks since my last update and I apologize for the delay. It has been a tough couple of weeks, not for Harrison but for me and Mike with some difficult decisions to make.

First let me say, HAPPY BIRTHDAY! to my soon-to-be 8 year-old. I cannot believe that Harrison turns 8 this Sunday—what a blessing. Nearly five years ago, when Harrison was diagnosed, I don’t think many people thought he would be celebrating his 8th birthday in the year 2007 but HE IS!! It has been an extraordinary 8 years and I am looking forward to the next 8!

[These latest pictures are of Harrison and his friends at a Japanese Restaurant last Sunday evening in NC, an impromptu birthday celebration before we left home.]

When I last updated we were heading into “scan week.” Harrison did well and the scans were completed. The results, however, took some time to decipher. Most of the work-up showed stable disease that is just not budging, despite the last 5 cycles of chemo. And there was, once again, a questionable node near his kidney that was cause for some concern. Well, after a week of deliberating the “team” in NYC was recommending a change in the treatment regime, with a call to “step it up a notch” to eradicate the remaining disease.

“Stepping it up a notch”, of course, meant a more intensive treatment plan and Mike and I had some hard decisions to make. There were many discussions between the team, myself, Mike, our family and friends.

We decided what we needed was a few days home, in North Carolina to clear our heads, think clearly and give Harrison some down time with his family and his friends—it had been 4 weeks since we had been home and it was time for a break.

So, off to NC we flew around March 2nd. Harrison headed off to school to do “normal” first grade things and I set off to make a good choice for a life saving treatment. I would have rather been learning about Mount Rushmore with Harrison’s class—UGH!!

Many sleepless nights, a lot of research and with much prayer we finally made a choice with what we thought was the best course, for Harrison.

The hard part about those choices was that he feels just terrific, has no pain, if full of energy, has great cell counts and is, overall, a happy and healthy eight year-old…oh yeah except he has neuroblastoma…and other than the beautiful bald head you would never know it…it is so Harrisonesque.

Here is what we decided to do…the new Combination of Targeted I131-3F8-Mediated Radioimmunotherapy and Bevacizumab in Patients with Relapsed or Refractory Neuroblastoma: A Phase I Study.

Harrison will be going inpatient this Monday, March 19, 2007, the day following his birthday—that must be good luck! He will receive the antibodies on Tuesday and 24 hours later he will get in IV infusion of Avastin (Bevacizumab). If all goes well he should be out of the hospital by Thursday. We will stay in NYC for the several weeks following the treatment to monitor Harrison's counts, have lab draws and scans. Once we see how he has responded to the treatment (around week 4 or 5 from the day of the treatment) we will determine what happens next.

I promise to do a better job updating the site during these next few weeks. Harrison should do very well with this treatment and has had a very good clinical response to antibodies in the past. We are hopeful that this trend will continue. He is going into this strong, eating well, rested, with a very healthy attitude and with great blood counts. These all make for a winning combination. It will not be easy but we are ready to give Harrison all the love and support he needs to make it.

In fact, Daddy, Aunt Sheila, Logan, Grandma and Grandpa are all flying in this weekend to give us the added support and good spirits that we all need! Harrison should be in fine shape after an extra dose of “Logan Love.” The boys are planning a trip to the American Museum of Natural History, on Sunday, to see the Dinosaurs and the Planetarium! It should be great fun with lots of good pictures to share.

Please help us surround Harrison with love and healing thoughts, as we head into this next part of our 5 year long journey. Harrison is a remarkable child with a bright and beautiful future ahead of him. We are so proud of who he is and what he has accomplished, in his few short years. He is our inspiration and we are both blessed and honored to be part of his life.

With love and hope,
Gina

Don’t forget to check-in on our friend and fellow fighter Adam , who is doing beautifully and has new web site of his own.

Tuesday, February 20, 2007 7:16 PM CST

We must accept finite disappointment, but never lose infinite hope.
—Martin Luther King, Jr.



Well, it has been quite some time since my last update. When I last wrote Harrison had just been released from our hospital in NC, due to a fleeting fever and thankfully, a brief stay.

Since that time [around Jan. 22], Harrison attended a few days of school, gave one great presentation on a “sting ray” for his [first] first-grade project on sea creatures, enjoyed his friend Brittney’s birthday party and flew to NYC for his 5th round of Cytoxan/Topotecan [Feb. 5th-9th], which he completed with flying colors. PHEW! I think that brings you all up to speed as of today!

Now for the rest of the week…SCANS! Yes, it is scan time again, starting bright and early Wednesday, morning, Harrison will have a complete work-up [CT-chest, abdomen, pelvis, head, neck and orbits; MIBG, MRI-spinal; Urine and Bone Marrows]. All will be complete by Friday and I should be posting results/ a new plan by Monday.

In the meantime, Harrison, other than the expected chemo pitfalls [blood/platelet transfusions and G-shots] has been feeling well, jumping around and just being 7.

We are always hopeful that the upcoming tests will demonstrate a decrease in disease or stability. Quite frankly, despite his strength and resilience—the chemo route is starting to wear on Harrison and each round seems to be harder on his system. I would be so grateful for enough decrease in disease to move onto a less destructive therapy. However, I no sooner have these thoughts when I remind myself to just be grateful for news that says “the disease has not spread and continues to be contained.”

I was recently speaking with a friend and I told her that my prayers have changed over the years. Of course, I still pray that tomorrow is the day we wake-up and Harrison gets to be free from a life of cancer but my prayers now have a small addendum that just simply asks for a tomorrow with Harrison.

The friend I was speaking with is a very close friend, whose precious 2 year-old has recently been diagnosed with Neuroblastoma. Speaking with Julie, over this last week, has filled my heart and mind with memories of life almost 5 years ago. When things that were once seemingly perfect have turned into utter chaos and there appears to be little or no light at the end of the tunnel. But Harrison has spent the last 5 years proving that there is indeed light at the end of the tunnel. Harrison is my hope my light and to my dear friend Julie, Adam will be your hope and your light. He will give you a renewed sense of the gift of life, the strength of a mother’s love and the divine spirit in each one of us. Revisiting the beginning with Julie and Adam has renewed for me the blessings I sometimes forget to “see.”

Please extend your prayers for Harrison to include Adam and the whole Sparks family, as they begin this new journey and surround them with the love and light that you have so generously given to Harrison all these years. I hope that Harrison’s life and the perfection that he has shown us gives my friends hope and strength.

God’s speed, baby Adam.

I will keep you all posted on both Harrison and Adam, as the weeks progress and I am sure Harrison [in all his wisdom] will be, before long, coaching little Adam in the art of navigating life with cancer.

Until next week…stay well, stay healthy and stay happy,

Gina

Monday, January 22, 2007 11:15 AM CST

Well, the cross-country white cell dancing must have really worked!!! Harrison is getting sprung today, thanks to a rise in his white cell count. We'll have to wait for a quick "filler-up" on red blood cells but we should be home in time for dinner, a bath and a good nite's sleep in our own bed.
Thank you to everyone who said prayers and danced their hearts out! I will update again soon with our latest plans, as soon as I know what they are [smile].

grateful to have Harrison safe and heading home,
Gina and Mike




Friday, January 19, 2007 2:05 pm CST


We do what we must, and call it by the best names.
—Ralph Waldo Emerson


Just a quick update to let you all know that Harrison is well but has made a [hopefully] brief detour to our local hospital here in NC. We arrived home last Sunday from NYC after his 4th cycle of Cytoxan/Topotecan and Harrison attended school on Tuesday and Wednesday. On Wednesday afternoon, Harrison came home from school with a little runny nose and a bit tired and by 8 pm that night had a fever (100.8F/38.2C). So off to CMC we went and were admitted by 9 pm that evening.

As it turns out, thankfully, all blood cultures are negative and the diagnosis of the fever was most likely something viral that he picked-up at school. This along with a white cell count of ZERO, from last week’s chemo is most likely the culprit of the fever. His last spike in temp was Wednesday night around midnight so we are in good shape. He is feeling well and anxious to go home. Dr. McMahon, who takes excellent care of Harrison, is fine with us checking-out as soon as the white cell cavalry arrives. So the waiting game begins, a game we are all too familiar with. In the meantime, Harrison is catching-up on his school-work, watching way too much Sponge Bob and playing way too much X-BOX!

Please say a little prayer for those white cells. I will let you all know if there is any change in our status. Until then…be well.

Warmly,
Gina

Wednesday, January 11, 2007 4:05 PM CST

If you can’t you must. If you must you can.
—Anthony Robbins


First, let me say Happy New Year to everyone. Everything is fine with Harrison so this will be a quick update. It is nice to use words like “uneventful” and “calm” when describing life in our world—2007 is off to a good start.

We did make it home to NC for Christmas around the 16th of December and we were able to stay home until this past Sunday, Jan 7th. We had a wonderful 3 weeks home and a beautiful holiday filled with good health, exciting play time for Harrison and Logan, family, great friends, an amazing visit from Santa, good food and oh yeah one blood and one platelet transfusion and 8 days of G-CSF—but there were NO FEVERS and NO HOSPITAL STAYS and that was terrific! He is feeling great, eating well and his energy levels have exceeded ours and for that we are so grateful.

We are currently in NYC on day 4 of cycle 4 of Cytoxan/Topotecan (cycle 30 something all in all of chemotherapy) and all is going well. Our plan is to finish this cycle tomorrow (Friday the 12th) and possibly head back to NC this coming weekend. It is becoming more and more important to Harrison to spend time home and we are doing our best to honor that while keeping him safe, healthy and maintaining a rigorous treatment schedule, with all of his therapy being conducted in NYC. Long gone are the days of the compliant 3 year-old, my soon to be 8 year-old is having definite opinions about “this cancer thing.” Striking a balance, for Harrison, between having a normal life and fighting cancer has become my greatest challenge. Oh well, it seems that life will continue to send us all kinds of challenges and we will continue to do our best to rise-up and meet them!

Harrison wanted his Dad to come for this round of treatment, so Mike joined us in our NY travels this week. We have really enjoyed having him here and we are hoping Grandma is enjoying her week at home but somehow I think she misses her “best” boy. We miss you too, Grandma!!

As for now, the next step for treatment is to do one more cycle of this chemo, somewhere around the week of Jan 29th and then around the second week in February a full testing work-up. Until then, may the New Year bring you all blessings and a year of peace, happiness and HEALTH.

Warmly,
Gina

Wednesday, January 10, 2007 7:02 PM CST

I am having difficulty getting the page updated. All is fine. Will try and put details on soon.

Gina

Sunday, December 10, 2006 6:13 PM CST

Give thanks for the healthy kids in your life and give to those who are not.
—St. Jude Children’s Research Hospital


Although Harrison is not or never has been treated at St. Jude, I just love this quote. It has been everywhere this holiday season—all the stores in the mall, the famous Christmas windows of Sakes Fifth Avenue in NYC and commercials on TV and it makes an impact on me every time I see it. I was trying to do some Christmas shopping this weekend with Harrison, of course, and every time we were on line in a store, whose holiday sales supported St. Jude the people in front of us and behind us on line, at the checkout, made donations. I guess seeing Harrison made people stop and feel with their hearts what the holidays are really all about—giving selflessly to others. I was very proud of him all weekend, as I know his life and his journey served to remind people of what is really important in their lives. He was stared at, pointed at and talked about in several shops and never seemed upset, confused or concerned about the attention he drew. I did explain that the stores were accepting donations to help other kids like him get their special medicines. He seemed very proud to help the cause on line at Pottery Barn.

For me, I always struggled with trying to find the balance between the frenzy that the holidays create—the shopping, the sending of holiday cards, the parties, the decorating and all the festivities and the reality of our lives as we continue to fight for Harrison’s. For me, the holiday is not much different, in spirit, than any other day of the week—as I give thanks for Harrison’s life, success and love and I ask for peace, hope and faith for those whose paths face bigger challenges than ours. But I will confess that I do love the all the trappings of the holidays and the shopping, addressing of cards, wrapping of gifts and cookie baking are all welcome distractions and provide a semblance of normalcy in an otherwise extra-ordinary experience.

This time of year also brings Harrison so much joy. He truly loves participating in all the hoopla and that, too, brings me joy. We are so grateful to have yet another Christmas with Harrison, feeling well and being happy.
We are blessed.

And now for what is happening in on the medical front this month…

Since I have not posted since before the Thanksgiving holiday let me start there. Harrison recovered from his second round of Cytoxan/Topotecan just in time to head back for Thanksgiving; we made it with 24 hours to spare! We had a terrific holiday, Harrison felt well, ate well and played with is cousins and friends all weekend. Everyone had a wonderful time, our whole family was together along with good friends and it was a cherished time.

We did manage to fit in some of Harrison’s tests before heading home for Thanksgiving and we finished-up the work-up just this past week. The results were, in my book, good although I think the medicals hoped for more. I have to keep reminding them that, “slow and steady wins the race.”

For those of you interested in the medial facts and the official results—here it goes—CAT scans of his chest, abdomen, pelvis, head, neck and orbits all stable with “no new disease appreciated” and one lymph node smaller; the MRI of his spine was stable/slightly better; Bone marrow aspirates all 4 negative but 2 bone marrow biopsies still positive; MIBG of entire body still abnormal but stable/no new disease with “a slight decrease in intensity in some areas”; the urine markers about the same VMA almost normal HVA still quite elevated; LDH down to 227 (60-200 normal) we were near 400 at relapse!

Now in English—Harrison’s appears to be at worst stable and at best “slightly” improved. This translates into more Cytoxan/Topotecan in our future. In fact, cycle 3 starts this Monday with cycle 4 most likely to follow in 21 days. Mike and I are good with this plan. As Harrison’s mom (non-medical personnel) I have seen a drastic positive improvement in his overall health since August (time of relapse), Harrison tolerates this treatment very well (knock on something wood please) with a few transfusions, a few days of G-CSF and so far NO inpatient stays. It is a good choice for now, as there are not many “good” choices left and it will allow Harrison to enjoy the Holidays feeling well and most importantly, for him, we will be home in North Carolina for Christmas.

So that is the short version of our long story. Our hope and wish for this season is that Harrison remains healthy, happy and strong to continue his journey wherever it may lead. And all our children receive the miracles they wish for.

Our family wishes yours a wonderful healthy holiday and every day.

With love and hope,
Gina, Michael and Harrison

Sunday, December 10, 2006 6:13 PM CST

Give thanks for the healthy kids in your life and give to those who are not.
—St. Jude Children’s Research Hospital


Although Harrison is not or never has been treated at St. Jude, I just love this quote. It has been everywhere this holiday season—all the stores in the mall, the famous Christmas windows of Sakes Fifth Avenue in NYC and commercials on TV and it makes an impact on me every time I see it. I was trying to do some Christmas shopping this weekend with Harrison, of course, and every time we were on line in a store, whose holiday sales supported St. Jude the people in front of us and behind us on line, at the checkout, made donations. I guess seeing Harrison made people stop and feel with their hearts what the holidays are really all about—giving selflessly to others. I was very proud of him all weekend, as I know his life and his journey served to remind people of what is really important in their lives. He was stared at, pointed at and talked about in several shops and never seemed upset, confused or concerned about the attention he drew. I did explain that the stores were accepting donations to help other kids like him get their special medicines. He seemed very proud to help the cause on line at Pottery Barn.

For me, I always struggled with trying to find the balance between the frenzy that the holidays create—the shopping, the sending of holiday cards, the parties, the decorating and all the festivities and the reality of our lives as we continue to fight for Harrison’s. For me, the holiday is not much different, in spirit, than any other day of the week—as I give thanks for Harrison’s life, success and love and I ask for peace, hope and faith for those whose paths face bigger challenges than ours. But I will confess that I do love the all the trappings of the holidays and the shopping, addressing of cards, wrapping of gifts and cookie baking are all welcome distractions and provide a semblance of normalcy in an otherwise extra-ordinary experience.

This time of year also brings Harrison so much joy. He truly loves participating in all the hoopla and that, too, brings me joy. We are so grateful to have yet another Christmas with Harrison, feeling well and being happy.
We are blessed.

And now for what is happening in on the medical front this month…

Since I have not posted since before the Thanksgiving holiday let me start there. Harrison recovered from his second round of Cytoxan/Topotecan just in time to head back for Thanksgiving; we made it with 24 hours to spare! We had a terrific holiday, Harrison felt well, ate well and played with is cousins and friends all weekend. Everyone had a wonderful time, our whole family was together along with good friends and it was a cherished time.

We did manage to fit in some of Harrison’s tests before heading home for Thanksgiving and we finished-up the work-up just this past week. The results were, in my book, good although I think the medicals hoped for more. I have to keep reminding them that, “slow and steady wins the race.”

For those of you interested in the medial facts and the official results—here it goes—CAT scans of his chest, abdomen, pelvis, head, neck and orbits all stable with “no new disease appreciated” and one lymph node smaller; the MRI of his spine was stable/slightly better; Bone marrow aspirates all 4 negative but 2 bone marrow biopsies still positive; MIBG of entire body still abnormal but stable/no new disease with “a slight decrease in intensity in some areas”; the urine markers about the same VMA almost normal HVA still quite elevated; LDH down to 227 (60-200 normal) we were near 400 at relapse!

Now in English—Harrison’s appears to be at worst stable and at best “slightly” improved. This translates into more Cytoxan/Topotecan in our future. In fact, cycle 3 starts this Monday with cycle 4 most likely to follow in 21 days. Mike and I are good with this plan. As Harrison’s mom (non-medical personnel) I have seen a drastic positive improvement in his overall health since August (time of relapse), Harrison tolerates this treatment very well (knock on something wood please) with a few transfusions, a few days of G-CSF and so far NO inpatient stays. It is a good choice for now, as there are not many “good” choices left and it will allow Harrison to enjoy the Holidays feeling well and most importantly, for him, we will be home in North Carolina for Christmas.

So that is the short version of our long story. Our hope and wish for this season is that Harrison remains healthy, happy and strong to continue his journey wherever it may lead. And all our children receive the miracles they wish for.

Our family wishes yours a wonderful healthy holiday and every day.

With love and hope,
Gina, Michael and Harrison

Sunday, November 12, 2006 10:08 AM CST

To travel hopefully is a better thing than to have arrived.
—Robert Louis Stevenson (1850- 18940)


I hope this update finds you all doing well. Sorry for the delay but we have been busy since my last update. Since I have last written, Harrison recovered from his last cycle of chemo around October 25th and we headed back to North Carolina for a few days—which turned into 11 whole days at home. Harrison was able to enjoy Halloween with his friends and attend the First Grade for the first time this year.

He had a great time home going to school, playing with friends and, of course, the highlight was Halloween with Logan. His teachers and friends at Davidson Day made him feel so welcome and such a part of the class; it was great to see him so happy.

And while we were enjoying our time off Dr. Kushner and Dr. Kramer were training and running the NYC Marathon to help raise money for Pediatric Cancer Research. Congratulations to both Docs who finished the race and helped raise tons of money! And thank you to those who supported the cause!

The break home, although 11-days, seemed to fly by and we returned to NYC this past Monday when Harrison received his second cycle of Cytoxan/Topotecan which makes somewhere around 30 cycles of chemo in the past 4 ½ years (UGH!). He finished chemo on Friday and now we will wait, again, for his counts to fall and then recover before returning home to NC, hopefully in time for the Thanksgiving Holiday.

The medical plan is to do a full scan work-up shortly after Thanksgiving to check on Harrison’s current disease burden. Our family is hopeful that these last two cycles of chemo have help eradicate some disease or at the very least helped to continue to arrest the progression. It is likely that we will need a new plan soon, as chemo options are exhausted.

As we move into this Thanksgiving Holiday, please keep Harrison in your thoughts and prayers. Our family will definitely be giving thanks for our brave little warrior and for his ability to continue this fight.

I will update again when the testing schedule has been set.

Warmly,
Gina

Sunday, November 12, 2006 10:08 AM CST

To travel hopefully is a better thing than to have arrived.
—Robert Louis Stevenson (1850- 18940)


I hope this update finds you all doing well. Sorry for the delay but we have been busy since my last update. Since I have last written, Harrison recovered from his last cycle of chemo around October 25th and we headed back to North Carolina for a few days—which turned into 11 whole days at home. Harrison was able to enjoy Halloween with his friends and attend the First Grade for the first time this year.

He had a great time home going to school, playing with friends and, of course, the highlight was Halloween with Logan. His teachers and friends at Davidson Day made him feel so welcome and such a part of the class; it was great to see him so happy.

And while we were enjoying our time off Dr. Kushner and Dr. Kramer were training and running the NYC Marathon to help raise money for Pediatric Cancer Research. Congratulations to both Docs who finished the race and helped raise tons of money! And thank you to those who supported the cause!

The break home, although 11-days, seemed to fly by and we returned to NYC this past Monday when Harrison received his second cycle of Cytoxan/Topotecan which makes somewhere around 30 cycles of chemo in the past 4 ½ years (UGH!). He finished chemo on Friday and now we will wait, again, for his counts to fall and then recover before returning home to NC, hopefully in time for the Thanksgiving Holiday.

The medical plan is to do a full scan work-up shortly after Thanksgiving to check on Harrison’s current disease burden. Our family is hopeful that these last two cycles of chemo have help eradicate some disease or at the very least helped to continue to arrest the progression. It is likely that we will need a new plan soon, as chemo options are exhausted.

As we move into this Thanksgiving Holiday, please keep Harrison in your thoughts and prayers. Our family will definitely be giving thanks for our brave little warrior and for his ability to continue this fight.

I will update again when the testing schedule has been set.

Warmly,
Gina

Sunday, November 12, 2006 10:08 AM CST

To travel hopefully is a better thing than to have arrived.
—Robert Louis Stevenson (1850- 18940)


I hope this update finds you all doing well. Sorry for the delay but we have been busy since my last update. Since I have last written, Harrison recovered from his last cycle of chemo around October 25th and we headed back to North Carolina for a few days—which turned into 11 whole days at home. Harrison was able to enjoy Halloween with his friends and attend the First Grade for the first time this year.

He had a great time home going to school, playing with friends and, of course, the highlight was Halloween with Logan. His teachers and friends at Davidson Day made him feel so welcome and such a part of the class; it was great to see him so happy.

And while we were enjoying our time off Dr. Kushner and Dr. Kramer were training and running the NYC Marathon to help raise money for Pediatric Cancer Research. Congratulations to both Docs who finished the race and helped raise tons of money! And thank you to those who supported the cause!

The break home, although 11-days, seemed to fly by and we returned to NYC this past Monday when Harrison received his second cycle of Cytoxan/Topotecan which makes somewhere around 30 cycles of chemo in the past 4 ½ years (UGH!). He finished chemo on Friday and now we will wait, again, for his counts to fall and then recover before returning home to NC, hopefully in time for the Thanksgiving Holiday.

The medical plan is to do a full scan work-up shortly after Thanksgiving to check on Harrison’s current disease burden. Our family is hopeful that these last two cycles of chemo have help eradicate some disease or at the very least helped to continue to arrest the progression. It is likely that we will need a new plan soon, as chemo options are exhausted.

As we move into this Thanksgiving Holiday, please keep Harrison in your thoughts and prayers. Our family will definitely be giving thanks for our brave little warrior and for his ability to continue this fight.

I will update again when the testing schedule has been set.

Warmly,
Gina

Sunday, October 22, 2006 12:55 AM CDT

Do not spoil what you have by desiring what you have not; but remember that what you now have was once among the things you only hoped for.
—Epicurus (341-270 BC)



And what we have now, in this moment, is just what we had hoped for— an energetic, happy and healthy little boy.

Harrison completed his first cycle of standard dose Cyclophosphamide (cytoxan)/Topotecan with flying colors. It is already day 15 from the start of the chemo and he is still flying with those colors. His counts have needed some support; he received a very large bag of red blood cells on Friday, the 13th and it is still holding (thanks Maureen, for insisting that he get every last drop!). He received platelets this past Thursday and has been doing G-CSF shots (to stimulate white cells) since last Tuesday. However, despite needing this support he is feeling very well, full of energy, playing and eating well too.

We have decided to stay in NYC until Harrison’s counts recover, making traveling to NC for a few days a safe option. He is just desperate to see his friends and attend school, but of course we need white cells to do that and they just have not arrived yet. So we wait…hopefully by the middle of next week we can travel home for a long weekend, before his next cycle of chemo—which begins on Monday, Oct. 30th.

That is the current medical update…now for Harrison’s social update. When I last wrote Logan had just left and chemo began. Mike flew back to NYC the following weekend for a visit. He has flown-up every weekend since we returned full-time to NYC and Harrison loves the 3-day visits with his dad. Last weekend, we picked Mike up from the airport and headed right to the Apple/Pumpkin Farm in New Jersey for some Fall fun. We got quite carried away with the apple picking (45 lbs later!!!!) and I ended up baking for the rest of the weekend. The weather was as perfect as the apples, crisp and smelling of autumn. Harrison had a terrific time and spent the whole day getting some fresh air, walking and soaking up the sunshine. The weekend flew by and Mike left again early Monday morning. Thankfully, Harrison’s sadness from his dad’s departure was cut short by an unexpected but terrific visit from Harrison’s Auntie (my sister, Erin) and my niece Emma. Erin had a business meeting in New Jersey and they both flew-up overnight. We had a great time last Wednesday escorting Emma to the American Girl Doll store on 5th Avenue. She had a ball shopping and Harrison did a great job helping her pick-out several outfits for her doll Emily. The visit was unfortunately too short but the kids really enjoyed seeing one another.

That brings us to this weekend. Harrison was hoping to return home but counts just were not high enough so Mike again flew-up to be with us. We have had a good but mellow weekend, just enjoying quite activities at the apartment hoping to avoid a fever and an inpatient stay—so far so good! The saddest part of the weekend was yesterday. We attended Michael’s tree planting memorial ceremony yesterday. I cannot believe it has been one year since Michael passed. Sharon put together a beautiful ceremony, in the park, by the baseball field where we helped to plant a tree in his memory. It was a day filled with tears of joy and sorrow and my heart was heavy for my friend Sharon. She was incredibly brave and amazing yesterday, as she asked those who gathered near the tree to think of today as a celebration of his life and not the mourning of his death. She is truly an inspiration and a mother like no other I have met. I love you my dear friend, Sharon, and Michael will always be alive in our hearts and in our memories.

One of the last things I wanted to mention in this journal is the upcoming NYC Marathon. Every year during the Marathon, Fred’s Team runs to raise money for pediatric cancer research and every year Harrison’s oncologist, Dr. Kushner runs for Fred’s Team . This year, Dr. Kramer is also running and so is one of my good friends, Dave Stegemann , whose son Justin is also treated at MSKCC with Harrison. So many people always ask me what they can do to help, well if you would like just click on one of the links and make a donation to a team member raising money for Neuroblastoma research. The only way that one day our children will be cured of this disease is to continue with the cutting edge research that MSKCC is currently doing. Harrison has benefited from their new trails time and time again, helping to prolong his life until there is a cure. So, if you would like to help us find a cure this is a great way to give.

I have spent a lot of time this week dwelling on what Harrison has been unable to do like attending school, having play dates with his friends and living like a healthy 7 year-old is entitled to live. What I lost track of is that all this is out of my control and I really do have what I always hoped for—Harrison is alive and well. I can touch him, kiss him, hold him and love him everyday. What more, in this moment, is there to desire? I have exactly what I hoped for on May 15, 2002, 4 ½ years ago and for that I will be forever grateful.

Please continue to keep Harrison in your thoughts and prayers; praying that he remains strong and well and able to continue receiving more life-saving therapy.

Until my next update… be well, be healthy and be happy.

With love and gratitude,
Gina



Tuesday, October 10, 2006 7:00 PM CDT

Faithless is he that says farewell when the road darkens.
—J.R.R. Tolkien (1892-1973)


Well, it has been a while since my last update; at least 10 days. It has been an eventful 10 days—but all good!

Harrison’s cousin (and best friend in the whole world) Logan and my sister-in-law Sheila flew to NYC to surprise Harrison and lift his spirits—and boy did it ever. He and Logan had a terrific week dragging Sheila, Grandma and I all over the city. Since Harrison had an extra week off from chemo, to let his counts recover, he was really feeling well and had a blast with Logan by his side.

They arrived Monday night, Oct. 2nd and the fun started right after our clinic visit on Tuesday, when we walked the several miles from clinic to the Toys ‘R’ US in Times Square. We wanted to start the trip off right and what a better way to do it when you are 6 and 7 years old. The boys had a great time shopping and riding the giant Ferris wheel that sits 4 stories tall in the middle of the store.

On Wednesday, after clinic, we headed home early for a day in the park and a late lunch by the water on the Hudson. On Thursday, we had the day off from clinic so we took the boys to see the movie Open Season and out for their very favorite--Japanese food, the poor Hibachi chef had his work cut out for him with two professional hecklers in the audience.

And then on Friday, it was back to clinic for a quick visit followed by a trip across town to the top of the Empire State building and of course, a stop at the tourist gift shop; we are now the proud owners of several miniature replicas of the ESB.

On Saturday, Mike arrived—YEAH reinforcements! Sheila, Grandma and I were wiped out but happy to be tired from such great activities. We spent Saturday on Liberty Island taking an up close look at what Harrison now affectionately refers to as “The Lady.” I had not been there since I was a kid and it was wonderful to see it through the bright and inquisitive eyes of Harrison and Logan. They boys took tons of pictures during the tour, which dumps you out into yet another gift shop, so miniature replicas of “The Lady” now join the mini Empire State buildings on our dresser. You could easily mistake our bedroom for a local Chinatown vendor. Oh well, it makes him happy and that is what it is all about.

Logan and Sheila, sadly, had to leave on Sunday night and Mike on Monday morning leaving Grandma, Grandpa, Harrison and I to begin his second round of Chemo.
I must say though that Harrison was so pumped-up by his “vacation” with Logan that he did not seem to mind starting treatment yesterday. Which brings me to the medical update…

When I last wrote Harrison’s blood counts were struggling to recover and the team opted to do an MIBG scan and see how much good the high dose chemo really did, before administering another round. As it turns out, the chemo did arrest the spread of the disease and there were NO new spots appreciated! However, it did not eradicate the disease altogether. Although, his docs seemed slightly disappointed with the result I was very pleased it had halted the spread of disease. So often, during relapse, as I have seen time and time again the "freight train" of disease takes off and no amout of treatment can stop it. This, thankfully, has not been the case with Harrison. We have always adopted the motto “slow and steady wins the race” so if we can fight slowly but surely for another 4 years—COUNT ME IN!

The team thought it best to try “standard” dose chemotherapy for a while, working to steadily chip away at the disease, keeping Harrison stable and allowing his blood counts to recover on their own without having to use his precious stem cells for a boost. So, the plan for now is 2 cycles of “standard” dose cytoxan/topotecan and then reevaluate his disease status; this should take us to about the second week in November, and then it will be time to make a new plan.

I must say that it is only day two but Harrison is handling this chemo very very well. He has been eating and drinking well, has not been sick, took a long walk outside today and is currently building a Lego City. I think that last hospital stay scared everyone, including me that perhaps his counts would not recover and he would continue to struggle but that has not been the case. His blood counts made a good jump over the weekend, with some extra time off and he is in good shape. I am a firm believer that his physical health is truly affected by his emotional well being and there is no better therapy for Harrison than the love and play time of Logan and his friends. Someday, when Harrison and Logan are older and can appreciate what Harrison has been through, I hope they read these journal entries and can thoroughly understand what they mean to one another. And hopefully, someday Logan will know how he helped to save Harrison’s life and at the very least how much his love and friendship added to the quality of it. They are so blessed to have one another and I will be forever grateful for their bond.

And I would like to thank everyone else out there who has prayed, sent love, positive thoughts, light and healing energy to Harrison. We cannot conquer this alone and all of you are helping him win this war. Harrison is a fighter and with having you all continually supporting him and us there is no way we will not win!! So from the bottom of my heart, thank you for hanging in there with us, he deserves all we can give. I no longer ask for a miracle, I just ask for tomorrow. So please continue to pray that this latest treatment plan keeps Harrison safe and stable and waking up to enjoy every tomorrow.

Please check out the new pictures of Harrison and Logan, working together to conquer both Manhattan and Neuroblastoma!
Grateful just for tomorrow,
Gina

Saturday, September 30, 2006 8:27 PM CDT

The white cell calvary finally arrived and we are back at the apartment, after a 15-day stay. Harrison is thrilled to be home, feeling great, eating like a champ and having a blast playing “Sponge-Bob” Monopoly with his dad! I will update on the details later, just wanted you all to know we are home.

Thank you to all of you who prayed, sent love, positive thoughts and good wishes for our baby. We could not make this journey without your love and support.

Look for more updates soon…

Gina, Mike, Harrison and Grandma, all glad to be home in their own beds!

Monday, September 25, 2006 10:06 AM CDT

When you get to the end of your rope, tie a knot and hang on.
—Franklin D. Roosevelt


…and hanging on is just what we are doing. Harrison is still inpatient due to low cell counts. But let me back-up and update you all from where I left off on the 17th.

Harrison was not feeling well at all when I last wrote. In fact, he started having terrible headaches and the vomiting continued for days. The fevers did, however, stop by Sunday evening the 17th. His headaches became so severe that they required IV pain medications, which panicked me. In the world of pediatric cancer, a headache can never be just a headache, a stomachache is never just a stomachache and a fever is never treated without an admission to the hospital etc…so you can imagine my biggest fear was that the disease had spread to his head.

Dr. Modak ordered an emergency MRI of Harrison’s head and after waiting what seemed like forever (it was actually less than 24 hours) we received news that the disease had NOT spread to his brain, skull or orbits. PHEW!! Dr. Modak was right all along that the chemo and low counts were mostly likely the culprit of his not feeling well. I do trust Dr. Modak’s judgment but it was good to have the information in black and white. Aside from the positive MRI results, we repeated Harrison’s urine markers, which are always a good indication of his disease status. These markers were quite elevated when he relapsed (a bad thing) but after just the first cycle of chemo both markers have come down considerably (a VERY good thing). All this points to Harrison having a good response to the chemo, a VERY VERY good thing!

All that took place last Tuesday and Wednesday. Here we are almost a week later and Harrison’s white count is still at 0 but he feels so much better. He has been eating normally, playing x-box, doing school-work and busying himself in any way he can (check out the pictures of the Lego Star Wars x-box expert talking with Logan on the phone about secret game strategies). So now it is just a waiting game, praying daily for those white cells to show. In addition to those prayers, Harrison has invented himself quite a cute little “white cell” dance that looks something like a modified Hokey Pokey! Surely this will help!!

Mike will be back this weekend. Hopefully, we will be back at the apartment then. His second cycle of high dose chemo was supposed to begin this morning but that, of course, has been postponed until Harrison’s counts recover.

That is really all for now. Although anxious to go home I remain grateful that he feels well, the headaches have stopped, the vomiting has stopped, there are no fevers and that there is no additional disease in his head. The rest should come in time.

We welcome prayers for those white cells as well as for Harrison’s health and happiness.

As my dear friend Suzan (Hazen’s mom) said, “the journey is worth the destination.”

With love and gratitude,
Gina

**This picture is from last week when Clifford made a surprise visit to the hospital!

Sunday, September 17, 2006 2:16 PM CDT

Only those who dare to fail greatly can ever achieve greatly.
—Robert F. Kennedy


Hello everyone, it seems as though the late effects of this chemo are going to give our boy a run for his money. We were admitted to the hospital on Friday evening for a fever. After receiving platelets, in the clinic Friday afternoon they wheeled Harrison across the hall to the impatient side for an admission. His counts are very low, currently without any white cells at all so the usual cocktail of antibiotics was started and here we are. He has still been vomiting almost daily and today he is getting blood transfusion. It sounds awful and he does not feel well but this is all to be expected as the fallout from the high dose therapy.

We have been slightly spoiled in the last few months, with no hospital stays, no fevers and general good health. Harrison, understandably, was none to please about the admission but is taking it in stride.

Mike flew up Saturday morning, and Harrison has enjoyed having him stay with him. We have made him as comfortable as possible with a multitude of DVD’s, videos and we even brought his X-box from the apartment and got it working in his room. Although, for the last 2 days he has generally been sleeping. I am hoping, after his blood transfusion and a good nap that he will be up to a walk down to the playroom.

Although, Harrison is not looking or feeling well, we are trying to keep in mind that this is all normal after this kind of chemo. I am grateful to Dr. Modak, who reminded Mike and I of this when he made rounds this morning. Harrison is a strong boy and he will be feeling much better next week, when his cell counts start to climb.

Harrison is holding his own and I hope that my next update will be to let you know that we are back at the apartment and Harrison is feeling his old self again.

Until then be well, be healthy and be happy.

Warmly,
Gina and Michael from the 9th floor at MSKCC.

Sunday, September 10, 2006 2:04 PM CDT

One cannot get through life without pain…What we can do is choose how to use the pain life presents to us.
—Bernie Siegel



I am happy to post that Harrison is doing well. He completed his first cycle of high dose chemotherapy and has come through with flying colors. I posted these pictures taken of Harrison last night so you all would believe me. Our apartment is on the water, on the Jersey side of the New York Harbor overlooking the Statue of Liberty and Lower Manhattan; it is just beautiful, as you can see from the pictures. There is a restaurant on the property that we can walk to and eat out on the water. Harrison felt like a walk yesterday and dinner out (need to eat out while the white count still permits) and Mike and I were happy to oblige.

The week has gone much better than I had expected. He was sick several times but overall tolerated it quite well. Maureen, his favorite nurse, took care of him all week in clinic. Maureen has taken care of Harrison since we first arrived at Sloan in August of 2002. She administered his first high dose chemo in NYC and was there to do it again for us this past week. I cannot tell you the excellent quality of care Harrison receives here in New York. I will be forever grateful that we are able to travel, have a second home and the privilege of receiving treatment at such an amazing facility. In addition, my parent’s love and devotion are immeasurable, making sure that Harrison and I are comfortable and arrive safely at clinic every morning. I could never walk this journey without them. They have again chosen to be with Harrison rather than anywhere else, helping me as we venture into this next phase of rigorous treatment. Thank you seems such a lame term for what I really feel—blessed, grateful and reinforced.

Yesterday, Harrison was feeling well and took the car ride with me to the airport to pick-up Mike, who flew in for the weekend. Harrison has really enjoyed his company. They have been building with legos and Kinexs and spending time at the outdoor playground. And I have been given some time off for good behavior. Mom and Dad even went away to the New York beach for the weekend. Overall, this weekend has been a major refresher for everyone, shoring us up for next week, which will most likely be days consisting of transfusions and G-shots (for his white cell count).

So, my report is, so far so good. Things often change hourly in the world of cancer battles but for now, we are doing well. Harrison continues to amaze me with his strength, courage and innocence. I am honored and privileged to share in his experiences.

Although, it is not the life we had hope for it is the one we have been given. We are doing our best to embrace our life, help Harrison live it to the fullest, and ensure a brilliant future for him.

Be well and I will update again soon.

With love and hope,
Gina

Sunday, September 3, 2006 12:27 AM CDT

Dear friends and family,

I hope this update finds you all enjoying the end of these beautiful summer days. The fall is upon us, soon the new school year will begin and so too will the start of a new treatment plan for Harrison.

He has enjoyed the summer; swimming, playing with friends and has cherished our summer months at home. So, it is with great heartache that I must give you this latest update…

Harrison, Grandma and I just finished his scheduled 12-week test work-up and the news was not at all what we had hope for. This is an update I hoped NEVER NEVER to write.
Harrison, for the first time in several years, has had progression of disease. In just 12 short weeks, since our last scan, his disease has increased in his bone marrow and he has several new lymph nodes throughout his chest cavity and abdomen, all positive for Neuroblastoma. Our family is, of course, devastated by this setback. And for those of you who have spent any time at all with Harrison, this summer, it is hard to believe that this energetic, active, playful child is experiencing such internal crisis.

Along with you, his doctors and his family were shocked. But we are working together with his amazing medical team to formulate a treatment plan. So far, the plan is to start very high dose chemotherapy this Tuesday, September 5th. Harrison will begin a regime of three chemotherapies; Carboplatin, Irinotecan and Temozolomide. So as Harrison begins high dose again, for the time in 3 years, his classmates, on the same day will begin the first grade. We wish his friends at Davidson Day an excellent first day and we will miss being there. On the brighter side of all this, the medical team, here in NYC, is optimistic that this strong chemo will help eradicate his bone marrow from disease and that one day Harrison may, again, be without remarkable disease. Our family, although heartbroken, remains faithful and hopeful that Harrison will come through this. He is a strong, resilient and remarkable child who is up for the fight—the fight for his life. For years he has been an inspiration to others and we know that his journey will continue to be one of hope, inspiration, grace and gratitude.

So, in the days and weeks ahead, please keep Harrison in your thoughts and prayers. We know that so many of you will be afraid for us, we too are afraid but it is our deepest wish that you surround our baby with love, light, and only good thoughts. Harrison has been in tough predicaments before and has fought valiantly and we will be there to shepherd him through this battle too. He is brave and courageous and he deserves us to be the same.

I will post as often as time permits, keeping you all updated on the days ahead.

The pictures I have posted are from just 2 weeks ago. Harrison today remains this same vibrant child. When you picture him, picture him as this wonderfully healthy soul.

With love and hope,
Gina

Wednesday, August 16, 2006 12:22 AM CDT

God will do for you what you cannot do for yourself. When you get out of your own way and let go of your defenses, you become humble. Humility is the doorway through which the Divine can walk into your life.
—Debbie Ford, The Law of Divine Guidance



First, let me get the apologies out of the way for being a web-slacker. I have not updated the site in almost 2 months, YIKES!! The good news is that the lack of updates is not due to bad news, with all that said let’s get to what’s been happening with Harrison…

When I last updated we were in the throws of a terrific Disney trip, the boys had a blast and the adults did well, too. While enjoying Mickey and his friends, Dr. Kushner did call to tell us that Harrison's second MIBG scan [remember it had to be redone because Harrison would not hold still] was fine and the lymph nodes were not MIBG avid—good news. But, so often with Neuroblastoma, the good news is counterbalance by just a bit of uncertainty. The rest of the story goes like this…although, Harrison’s bone marrow [aspirates and biopsies] were all negative for disease, further testing, that took almost 2 weeks, did demonstrate a very very small focus of Neuroblastoma cells. The consensus was that this is not new disease but old “stuff” that has been hanging around forever. So what do you do when you are “unsure” you change therapies and try to shock the cells into retreating? That is exactly what Dr. Kushner recommended, so that is what we did.

We finished our cycle of Accutane, finished our Disney trip and headed back to NC to begin oral VP-16 [etoposide]. Harrison has done this chemo before, in the IV form, back in 2002 but never orally, and there are some good results with this drug and minimal residual disease. That brings me to the week of July 10th when we started his first cycle. It runs for 21 consecutive days, 3 times a day. He does well taking it and uses milk shots to chase the taste. We finished cycle 1 on July 30th, took the standard 7 days off and began cycle 2 on August 7th. This is week two of the 21 days and Harrison is doing very well. Virtually no side effects, as you can tell from the pictures and he has not let it stop his summer fun. We have been home this whole time enjoying the HOT weather, the pool, friends and especially being inseparable from Logan! The only effect, so far, is hair loss; this prompted a very quick trip to the hair stylist who gave Harrison the latest in Marine quality hair, the “buzz” cut! The upside is those beautiful blue eyes that you can now marvel at verses not being able to tell their color under that “surfer doo” he insisted on at the beginning of the summer. He does not even require any anti-nausea meds.

In addition to chemo and swimming, Harrison has been attending weekly physical therapy sessions with Ms. Jackie, who is working wonders with his upper body and leg strength and weekly tutoring sessions with his future first grade teacher Mrs. Choate, who is terrific and Harrison loves her! So it has been a busy summer and one that, due to fluctuating counts, has keep us close to home—not a bad thing for a family that has spent the better part of 4 years apart!

As for me, I have been spending a great deal of time enjoying, my friends and family and my home. Although, not the exciting summer we had planned with travel etc… uneventful in the cancer world is a welcome blessing.

As for the future, Harrison and I will head to NYC [in the next few weeks] to do the testing “work-up” evaluating the efficacy of the VP-16 and making the next plan. Personally, I hope the next plan includes a treatment that allows Harrison to begin the first grade with the rest of his class on Sept. 5th. Beyond that, I dare not think about.
Again, sorry for the delay in updates, all is well, and Harrison continues to look and be healthy, despite the remaining disease and the chemotherapy. Our family hopes you all have a glorious, happy and healthy remaining summer and wish you all a beautiful start to the school year.

Warmly,
Gina

I will update again closer the to the scan dates.

Wednesday, June 21, 2006 8:39 AM CDT

Hello from sunny and hot Disney World. Just wanted to let everyone know that things are going well. No results from the scan on Friday yet but we did make it to Disney safe and sound on Saturday. The boys are having an absolute blast and actually we are too. We did start Accutane on Monday and no one has called yet to change the plan so I guess things are ok. Harrison looks terrific, on the outside and has tons and tons of energy.

Look for more updates soon…

Gina

Thursday, June 15, 2006 5:41 PM CDT

There is never a single approach to something remembered.
—John Berger


Wow is this quote ever true. I feel like Harrison’s life has been a testament to this quote. He is all about many approaches and he has even made up a few of his own—thankfully.

I know so many of you are waiting for a test result update. I have hesitated posting, as some results are still not in yet. So far, this is what we know—the bone marrows are negative for disease—great news! His urine markers are again within normal limits and his LDH level is good, also within normal limits—all more good news. His CT scans do, however, show that 2 nodes that have been around for a while may be “slightly enlarged.” One of the nodes is near his trachea and the other is abdominal. Both are still within the 1 cm size limit, the problem is that last week Harrison would not lay still for the completion of the MIBG (nuclear medicine) scan so we did not get SPECT (close-up image) of his neck, abdomen and pelvis. Because of this, Harrison and I flew back to NYC today, after only being home for 4 days to redo the MIBG scan. This should give us a clear picture of what those lymph nodes are up to. So, you can see why it is with hesitation that I post before all the news is complete. So, just keep those prayers coming that those nodes are nothing or at the very least manageable.

What does all this mean? It means we don’t know the plan yet. His scan is very early in the morning around 8 am so it is my hope that by the afternoon we may have some preliminary results or at least enough info to make a treatment plan.

As for what my “treatment plan” is that’s easy—take Harrison to Disneyland on Saturday to celebrate his graduation from the Kindergarten, the start of summer and his overall good health and energy. In fact, we leave on Saturday. Harrison, me, Mike and of course Logan, Aunt Sheila, Uncle Brady and even Colby (my 15 year-old nephew) are all joining us. It should be a great time, if last year’s trip was any indication.

So, by Monday, I hope to share with you all, our new treatment plan, Harrison and Logan’s graduation pictures and our graduate with his favorite Disney characters.

Thank you all for your generous and kind emails, your love, your support but most of all for your prayers.

With hope,
Gina

Friday, June 2, 2006 8:37 AM CDT

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.
—Anais Nin


Hello everyone, just a brief update to let you all know what has been happening with us. As you can see from the pictures, Harrison seems to be doing quite well.

We had a great Memorial Day weekend out at Grandma and Grandpa’s, at the beach. He swam, played in the sand and had a great time. We have been home now for 12 weeks and it has been amazing. Life almost feels normal but it is that time again—quarterly scan time, and a stark reminder of how we are indeed far from normal. Harrison, Grandma and I are heading to NYC next week.

So, I humbly ask that you keep Harrison in your prayers, especially on June 7th, 8th and 9th when he will undergo: CT scans of the head, neck, chest, abdomen, pelvis and orbits; a MIBG scan; bone marrow biopsies and aspirates; and urine testing. Since March, Harrison has completed 3 cycles of Accutane and my hope is that it has been enough to keep his disease from reoccurring or advancing. He looks great and feels well but as many of you know this disease can be deceiving. So, we remain hopeful as we head into next week.

I will be sure to post as soon as the results come in but we, most likely, will not have official results until sometime around the 13th or 14th. In fact, Harrison and Logan have their Kindergarten graduation on June 13th, our family hopes for a double celebration for Harrison—our rising first grader who remains “without measurable disease!”

Have a great beginning of the summer!

With love and hope,
Gina

Tuesday, April 25, 2006 10:41 AM CDT

A journey of a thousand miles begins with a single step.
—Author unknown



It has been a while since my last update and I just wanted to let everyone know that we are doing fine—especially Harrison. We have completed our 2 cycles of Accuatane and are waiting to hear our next move from New York. It has been terrific being home for 7 weeks now!! Harrison has been able to participate full-time in school and has been able to attend all things that a seven year-old should do, such as…

Spend the week at the beach during Easter break. As you can see from the pictures, we had a great time at Grandma and Grandpa’s house. Logan and Harrison hit the beach almost everyday, went to the driving range, played miniature golf, dyed eggs and had a traditional Easter-egg hunt. Mom and Dad, along with Aunt Sheila, Uncle Brady, Auntie and Jason had a great time too, both, golfing and beaching. It was a wonderful week! Thank you Grandma and Grandpa for a much needed and fantastic holiday!

In addition, Harrison received his second soccer trophy for completing his second season of Strikers Soccer and is starting golf lessons this spring. Somewhere in here I guess there will be a trip to NYC, I will post when details are decided.

In the meantime, we plan to enjoy the remaining days of spring and hope to finish out the year at school.

Our family hopes your family is as equally happy and healthy. And until the next update please assume we are well, playing soccer, attending school, and enjoying the wonderful Carolina weather!

Grateful beyond words,
Gina

Saturday, March 25, 2006 2:32 PM CST

The painful things seemed like the knots on a beautiful necklace, necessary for the beads to stay in place.
—Anita Diamant, The Red Tent



It was 8:00 am, exactly, on March 18, 1999 when our family received the most amazing gift from God—our baby boy, Michael Harrison Nichols. Now, 7 years later, I can still recall every moment leading up to that one and every moment since. Looking at Harrison, on his seventh birthday I still swell with those same feelings, the kind that make your chest feel like a large balloon might burst from within it. But on the afternoon of March 18, 2006 there was more inside me than just the thrill and terror that comes with a new baby, there was more of a calmness, a knowing that for today, in that moment, in that few seconds while he was blowing out his candles, that Harrison had made it and his life, with all its trappings filled with joy and sorrow was meant to be. Looking at the excited faces of several dozen children anticipating chocolate cake was a startling reflection of my own raw emotions—excitement and anticipation; this was the first day of the rest of his life.

Well, it has been quite some time since I have last written and so much has happened. In February, several days after my last entry Harrison was discharged from the hospital in Charlotte and the pneumonia cleared-up. Harrison and I, along with his grandparents, headed North the first week in March for “scan week” which turned out to be “scan 2 weeks” due to scheduling difficulties and Harrison’s need for anesthesia to complete his 3 MRIs. So scan week finally finished on March 10th and the results were well worth waiting for.

… for the first time in nearly four years Harrison’s test results—MIBG, CT (chest, abdomen, pelvis), MRI (brain, neck, spine), bone marrow biopsies, echocardiogram and urine markers are demonstrating NO EVIDENCE OF MEASUREABLE DISEASE. What does that all mean? Well, in Harrison’s case there still are very small pieces of tumor tissue that are “peppered” up and down his spine. Those pieces are unresectable but apparently also inactive. In addition, with Neuroblastoma it is always considered a very likely possibility that disease still exists on a microscopic level, even when it is undetectable. Again, what does all this mean? It means that Harrison is “as cancer free as cancer free is ever going to be for us” and that is WONDERFUL news. What is hard to explain to those not in the cancer world is that with Neuroblastoma you are never really done. That is the one question that people always want to know, “so, is he finished with treatment? Is he finished going to NYC?” Life with Neuroblastoma will never be over until Mike and I die before Harrison, in the natural cycle of life. And yes, we will continue with our trips to New York and treatment will continue, quite possibly for months but that is fine with us. As long as Harrison is leading a happy and healthy life we are fine with whatever we have to do to keep him happy and healthy.

And happy and healthy are two words that really do describe Harrison. In addition to this amazing news, Harrison just celebrated his 7th Birthday—and boy did we have a true CELEBRATION OF LIFE party. We shared his day with 35 of his closest friends and classmates along with about 30 of our friends and family. We had a grand celebration at our friend’s restaurant—Lucy and Craig I can’t thank you enough for such an amazing display of food and friendship; we were overwhelmed. Harrison had a terrific time with the highlight of the day being the “Star Wars” cake (see pictures). We want to thank everyone who joined us in making this day a true celebration of life. It was a day we prayed for and always dared to hope would happen.

So for now, we are home in North Carolina letting the waves of this unbelievable news wash over us cleansing all the debris and rubble from these past four years. In life, as we are all too painfully aware, there are no guarantees and well, “the best laid plans...” But we can take time to bask in the gift that each day, each month and new each year brings—the gift of hope. That is what we cling to, that is the shoreline that welcomes every powerful and life-sustaining wave.

Congratulations my dearest Harrison, on your seventh birthday, the first day of the rest of your life. Cheers!

Your loving Mom

Sunday, February 19, 2006 7:44 PM CST

Our dearest Harrison,

As part of your scrapbook page this month, Mommy and Daddy were asked to write you a letter telling you why we are thankful to have you in our lives. This is such an easy letter to write because Daddy and I often talk about the reasons we are so grateful to have you. We always tell you that you are our most precious gift from God and you always say that God really knew what he was doing when he gave you to us. We feel the same way; you are perfect for Daddy and me.

When we think of the ways we are thankful for you we think of your beautiful smile, your tender heart, your wisdom beyond your years, the way you say hello to us in your heart, how much we enjoy being together, and how much love we share. You are such a beautiful child both inside and out and we could not be more grateful to share our lives with you.

I know that we often have to do things other families do not do and someday you will understand how much more that makes Daddy and I cherish you each and every moment of each and every day. You are a remarkable child, Harrison, and Daddy and I are so very proud and honored to be your parents.

You mean the world to us, you are our hearts and we love you to the moon and back and bigger than the universe.

Love,
Mommy and Daddy


As part of Harrison’s kindergarten experience we create, as a family, a monthly scrapbook page, his teachers determine the theme. A few months ago, part of the page assignment was a letter from your parents telling why we were thankful to have our child in our lives. How do you even put that into words that are close to adequate? The above letter was our attempt to tell Harrison how truly grateful we were to have him. This letter caused me such pause and reflection; how do you help him understand that our whole world is about him, loving him, cherishing him, protecting him and most of all saving him. We are so lucky to truly know the meaning of being thankful for the life and existence of our child, something we will never ever take for granted.

It has been a while since my last update [over a month] I am afraid. So much has happened, let me see if I can give the condensed version. The week after surgery [January 16th] Harrison began a 5-day course of Irinotecan/Temezolomide, which he completed without any problems. The week after that [January 23rd] he began a 6-day course of radiation [twice a day] to the site in the upper left neck where the lymph nodes were resected. And then finally, on February 2nd, after a month of treatments we were able to come home to NC on a well-needed break.

Since then, Harrison has been attending school daily, playing with friends, rode the Zambonie at a Checkers Ice Hockey game and enjoyed all the Valentine cards and treats at the school party [he missed last year’s party due to treatment]. Life has been good to us and he has truly enjoyed his time at home.

We were due to leave for NYC, Monday, February 20th but Harrison’s body had different plans. As it turns out he came down with a fever this past Saturday and we are currently inpatient at CMC, here in Charlotte. It was confirmed today that he has pneumonia, for the first time this year. We are sort of veterans at the pneumonia thing, as he fought it three times last year. I think we have this pretty well under control and Dr. McMahon is doing a great job treating Harrison. We should be in for a few more days, doing intensive Respitory Therapy, getting IV antibiotics and generally resting under the watchful eye of Dr. McMahon. Harrison is a bit wiped out but overall is tolerating this well. Of course, this throws a total wrench in our plans to have scans staring Tuesday in NYC [time to evaluate if the surgery, chemo and radiation did the trick] but that will just have to wait until Harrison is better and up to traveling—one day at a time is the best any of us can do.

That pretty well brings everyone up to speed on what is happening with us. I will update again as we reschedule “test-week” and make our way to NYC. For now, we are just concentrating on Harrison feeling better and getting rid of the pneumonia that continues year after year to plague his left lung.

Thanks for checking-in and don’t forget to leave a note in the guest book, it always helps Harrison, Mike and I to read your loving thoughts and good wishes.

Until the next update…please continue those prayers for Harrison…and be well yourselves.

Gina

Saturday, January 14, 2006 10:26 AM CST

Children are living jewels dropped unsustained from heaven.
Robert Pollok


Good afternoon everyone. Everything here is fine; I just wanted to leave a brief update on the latest news. Harrison seems to be recovering nicely from his surgery and is feeling well. We received news yesterday that his bone marrow biopsies and aspirates, for the third time, show NO evidence of neuroblastoma!!! And his urine markers are, again, well within normal range—VMA 6 (<8 normal) HVA 10 (<14 normal). The pathology of the 4 dissected nodes is sort of mixed, showing both treated disease and
ganglioneuroblastoma; which is a combination of dead and live tissue, so as it turns out, it was best just to remove the nodes. As for the future treatment plan, Harrison is having his radiation simulation on Monday and will most likely begin a 5-day course of Irinotecan, as a hold over therapy, while we wait to get on the radiation schedule. I should have a more concrete schedule of events later in the week. As for now, we are just enjoying our down time. Thank you for checking-in and I will update later in the week. Our prayers are being heard and Harrison is closer than he has ever been to a life without cancer. We are blessed beyond what we dared to imagine.

With love and gratitude,
Gina

Monday, January 10, 2006 4:15 PM EST

Harrison has been officially discharged from the hospital. I guess when you eat French Toast, crackers, Gatorade, ice pops and granola bars, require no pain meds and beat the play room volunteers at Nickelodeon trivia they have no real cause to keep you—plus a new post-op patient really needed the bed [smile]. So, needles to say, we were discharged from the hospital less than 24 hours after Harrison emerged from the O.R. He is happy to be home playing X-BOX and eating blueberry pancakes and sausage. We should have the rest of the week off to recover, relax and prepare for what comes next, by the way I have no idea what that is but I should have a better idea by the end of the week. Thank you to everyone, again, for the wonderful emails and notes in the guest book! We are blessed and Harrison is once again VICTORIOUS against those nasty neuroblastoma cells. I will update again when the “new” plan is in place. Until then…be well and be happy!

Love,
Gina






January 9, 2006 4:38 PM

Well, surgery is over and Harrison did just GREAT and so did Dr. LaQuaglia. The total procedure lasted only a few hours (including bone marrow biopsies) and everything went very well. Dr. L removed 4-5 lymph nodes from the upper left neck. They will be sent off to pathology and we should have those results in a few days. Harrison skipped recovery and went straight to the POU (pediatric observation unit) and since about 3:00 has eaten 2 pieces of French Toast, a bag of peanut butter crackers, and a glass of Gatorade! He has absolutely no tubes other than his IV and is currently sitting-up watching “Star Wars.” His pain seems well controlled with only one dose of morphine, so far, and there seems to be no additional Horner’s symptoms or voice damage. He is such a trooper! I hope our night goes as well as this afternoon and we will hopefully be sprung sooner rather than later. Thank you all so much for the wonderful notes in the guest book, the amazing personal emails and the phone calls. We are so blessed to have so much love and support. I will post again tomorrow. I hope you all have a terrific night--just knowing that Harrison is one step closer to NED (no evidence of disease) is more than enough for this Mom and Dad to get a good night’s sleep! Until tomorrow…

Both relieved and grateful,
Gina and Mike





Saturday, January, 7, 2006

The Grand Old Oak Tree

For my son Harrison and our loving family

This is a short story about a forty year-old oak tree. A small oak tree was planted sometime during the summer, about forty years ago. Over the course of many many years, the oak’s roots became firm, strong and established. The years were long and the trials and tribulations were many—there were a great many storms with fantastic winds, rains and lighting but the little oak tree weathered each challenge and its roots dug in deeper and it grew more fortified with every passing year, giving rise to new branches that filled the little oak with personality and life. The tree nurtured and loved its branches, which flourished and bore [at first] small leaves of their own. And again, over the long years, the leaves multiplied, changed color, grew and added vibrancy and vitality to the now grand old oak tree.

Life moved on as life will do and one day a man came to clear the land where the grand oak sat. At first, the oak was scared and nervous, unsure how it would survive let alone protect its beautiful branches and the lively leaves. The tree was humbled, the tree wavered and the tree shook far worse than it ever did in years past when it weathered the many treacherous storms.

And then, the tree remembered…it remembered its roots stronger than the thickest steel, and it remembered the earth, which kept it grounded and gave it rich soil to feed from and it remembered the rain water, which nurtured its roots and helped its branches grow long and striking. And it remembered its leaves, the most delicate and treasured part of itself.

And the grand old oak was no longer afraid. You see, the oak knew it had nothing to fear. The oak’s roots, branches and leaves gave it strength and it knew that nothing could destroy it and it was right. The man who came to clear the land did indeed clear all the land except for the place where the grand old oak stood and still stands today with its sovereign roots and its well formed branches outstretched far beyond its trunk, home to the no longer delicate but much coveted leaves.

Each year the grand old oak tree gives thanks to its roots, that for forty years and through each new challenge have grown together becoming stronger every day and to its well formed branches that fostered from its nurturing roots yielding what it is most thankful for—the life of its most beautiful, most glorious and most precious leaves.

—Gina Nichols




This story was my holiday gift to Harrison and to our amazing family this year. I cannot describe to you all what a truly magically holiday we had. We never dreamed we would have such a long and generous break from the hospital. Our family was able to enjoy six wonderful weeks at home. And we made the most of each and every minute. I have not seen Harrison this happy in a long time. He was just thrilled to be spending everyday with his cousins and his daddy and was able to participate full time with his kindergarten class. As for me, I was able to shut out cancer for a few weeks and watch my son thrive. I was able to do the “normal” mom things like bake, shop, decorate and entertain. As magical as our holiday was it is now time for the New Year and to head back into reality…

We are back in NYC and preparing for Harrison's surgery on Monday. I met with Dr. LaQuaglia, on Thursday, to discuss the details of the operation and I must, in all honesty, say that it does not sound nearly as complicated as his first three. Dr. L plans to remove the lymph nodes in the upper left neck and around the trachea/windpipe. The risks are minimal with the exception of increasing the severity of his Horner’s Syndrome and the slight risk that the nerves near the windpipe will be damaged causing Harrison to have a raspy horse voice; all of which we can live with if it means ridding Harrison of the remaining neuroblastoma cells. He is expected to make a quick and total recovery with an estimated 2 nights in the hospital and no PICU (pediatric intensive care unit) stay—this means no trip across the road to New York Hospital—GREAT news for Harrison!

Mike, as well as, Grandma and Grandpa are here and Harrison’s two aunties (my sister and Mike’s sister) will be arriving tonight, so he has a tremendous support system going into the surgery. Harrison is really taking the news well and has already coerced his Grandmother into a pre-surgical Toys ‘R’ Us trip yesterday—as you can imagine he made out pretty well—I am shocked that there is actually something he does not have after Christmas [smile].

As for now, there is little else to report. We plan to enjoy the weekend together as a family. Mike is taking Harrison and I to the big boat show here in NYC today and Harrison requested Japanese for his pre-surgical meal (this kid is really milking this surgery thing!) so it will be off to dinner after the show. And then, of course, the Panthers play the Giants, here at Giants stadium so we will be watching the game on Sunday! GO PANTHERS!!! On Monday morning we will head to the hospital bright and early—he is scheduled for 9:00 am.

Here is when I ask for your love, your light, your gift of warm thoughts and prayers, for Harrison, this coming Monday. Several of Harrison's friends are also having very big days on Monday… Hazen has scans, Dylan starts another cycle of treatment and Christi begins a new phase I trial at CHOP. Harrison and his group are little but they are ones to be reckoned with… brave, courageous, soulful, proud and strong are a just a few words that come to mind. And as for us parents, we are, in a word, “humbled” by them.

Gina


Friday, December 9, 2005 12:04 AM CST

Hello everyone and Happy Holidays. Our family hopes you all are enjoying this beautiful holiday season, we sure are. We have been home from NYC since before Thanksgiving so Michael, Harrison and I have really been getting into the “mood.” This is the first Christmas in 3 years that we have shopped for and decorated our Christmas tree as a family. For the last few years, we have either been in the hospital or have flown in at the last minute. It is amazing what most take for granted is so special to us. We purchased a beautiful 10-foot tree and had a great time with all the trimmings! Until… the tree stand gave way and the tree fell and we had to start again…oh well…life is never what you expect but you pick-up and go on and make the best of it and for us it is near perfect this year! And the tree still looks great!!!

Since I last updated, we have formulated the latest treatment plan and Harrison began a cycle of Isotretinoin, or more commonly known as Accutane, yes the medicine typically used to treat severe acne. In very [very] high doses it is also used as a post treatment anti-neuroblastoma drug. What has been nice about this treatment is that it allows us to stay home through the holidays and it is tolerated fairly well by children. After the holidays, in early January we will head back to NYC where Harrison will undergo his 4th surgery. Yes, you are reading correctly, Harrison is having surgery on January 9th. This is to remove what the team believes are the last remaining lymph nodes that are still positive for disease. These lymph nodes are located in the upper left section of the neck and the upper left chest. Dr. LaQuaglia, the wonderful surgeon who removed Harrison’s original tumor (3 surgeries), will be doing the procedure so we are very confident that all will go well.

After surgery Harrison will have several days of external beam radiation to the removal sites and then we will see what comes next. As for now, he is really enjoying school and getting into all the holiday festivities. His class is participating in the holiday school play, which will be held in the auditorium of Davidson College and we are really looking forward to that. He has also been busy making quite a “wish list” for Santa and I feel sure he will do well in that department!

I cannot express how thrilled and grateful our family is to be spending this holiday at home together with all the normal excitement and stress that comes with preparing for a month filled with family, good friends, good food, and lots and lots of love! We are especially blessed with Harrison’s continued good health and happiness as well as the health and happiness of both Logan and Emma, our family’s other two precious children.

As we move forward into this time of hope, love and miracles our family wishes you and yours peace and joy in the New Year.

I will update again after the holidays…be well…and be joyful!

Love,
Gina, a proud and blessed mother.

Thursday, November 24, 2005 6:06 AM CST

Good morning and Happy Thanksgiving everyone. I just wanted to leave a small note with a BIG message about Harrison's latest test results. It appears that Harrison has had a terrific response to the latest dose escalated/heated inactivated 3f8 trial he completed! His bone marrows are all negative for the third time, his MIBG indicated clearings in both femurs and the pelvis. In addition, the MRI report confirms that the remaining spinal pieces continue to remain stable/treated and inactive. The CT shows no new disease; what’s left are several subcentimeter nodes in the left neck area and the upper chest. This is the least amount of disease Harrison has ever had! So the Nichols family will be both giving thanks and rejoicing this Thanksgiving Day!

As for what is next, other than eating Turkey and marveling at the miracle of our good fortune, the plan is still in the works. It is possible that we may be staying home for a while with some hold-over oral meds while we await the new vaccine trial due out as of now some time in January.

Harrison is feeling great and started back to school last week. He made a terrific pilgrim in the Thanksgiving play and Logan was a fine fine Turkey! Well, that is all for now but certainly that is more than enough.

Our family wishes you and yours a wonderful Thanksgiving Day and please accept our humble thanks and gratitude for all the prayers and good thoughts you, our dear friends and family, have sent to Harrison. Those prayers have been lifted-up and answered.

I will update again soon with more details about what the future hold for us. Until then be well and be happy…

Love,
Gina

Thursday, November 24, 2005 6:06 AM CST

Good morning and Happy Thanksgiving everyone. I just wanted to leave a small note with a BIG message about Harrison's latest test results. It appears that Harrison has had a terrific response to the latest dose escalated/heated inactivated 3f8 trial he completed! His bone marrows are all negative for the third time, his MIBG indicated clearings in both femurs and the pelvis. In addition, the MRI report confirms that the remaining spinal pieces continue to remain stable/treated and inactive. The CT shows no new disease; what’s left are several subcentimeter nodes in the left neck area and the upper chest. This is the least amount of disease Harrison has ever had! So the Nichols family will be both giving thanks and rejoicing this Thanksgiving Day!

As for what is next, other than eating Turkey and marveling at the miracle of our good fortune, the plan is still in the works. It is possible that we may be staying home for a while with some hold-over oral meds while we await the new vaccine trial due out as of now some time in January.

Harrison is feeling great and started back to school last week. He made a terrific pilgrim in the Thanksgiving play and Logan was a fine fine Turkey! Well, that is all for now but certainly that is more than enough.

Our family wishes you and yours a wonderful Thanksgiving Day and please accept our humble thanks and gratitude for all the prayers and good thoughts you, our dear friends and family, have sent to Harrison. Those prayers have been lifted-up and answered.

I will update again soon with more details about what the future hold for us. Until then be well and be happy…

Love,
Gina

Thursday, November 24, 2005 6:06 AM CST

Good morning and Happy Thanksgiving everyone. I just wanted to leave a small note with a BIG message about Harrison's latest test results. It appears that Harrison has had a terrific response to the latest dose escalated/heated inactivated 3f8 trial he completed! His bone marrows are all negative for the third time, his MIBG indicated clearings in both femurs and the pelvis. In addition, the MRI report confirms that the remaining spinal pieces continue to remain stable/treated and inactive. The CT shows no new disease; what’s left are several subcentimeter nodes in the left neck area and the upper chest. This is the least amount of disease Harrison has ever had! So the Nichols family will be both giving thanks and rejoicing this Thanksgiving Day!

As for what is next, other than eating Turkey and marveling at the miracle of our good fortune, the plan is still in the works. It is possible that we may be staying home for a while with some hold-over oral meds while we await the new vaccine trial due out as of now some time in January.

Harrison is feeling great and started back to school last week. He made a terrific pilgrim in the Thanksgiving play and Logan was a fine fine Turkey! Well, that is all for now but certainly that is more than enough.

Our family wishes you and yours a wonderful Thanksgiving Day and please accept our humble thanks and gratitude for all the prayers and good thoughts you, our dear friends and family, have sent to Harrison. Those prayers have been lifted-up and answered.

I will update again soon with more details about what the future hold for us. Until then be well and be happy…

Love,
Gina

Wednesday, November 9, 2005 9:50 AM CST

Although the world is full of suffering, it is full also of the overcoming of it
Helen Keller


Late Happy Halloween to all. It has been a while since I have updated. Things were very rough for a few weeks with Michael passing and Harrison finishing a difficult treatment. Sharon has done a wonderful job of continuing to update Michael’s site so please visit and stop by the guest book while you are there.

On October 28th Harrison was the third child in the country to complete the Phase I trial of dose escalated heat-inactivated 3F8’s. I am so proud of Harrison for not only, once again, being a pioneer, for the development, of a treatment for nb but also for how brave he was during a painful and difficult therapy without ever complaining or refusing to participate. He is truly our hero! His classmates generously provided gifts for him to open everyday while we were in NYC to help brighten his day—and boy did it. He really looked forward to the “gift bag” every morning. Thank you to all the moms at DDS for your generosity. He weathered the treatment and we returned to NC on Sunday the 30th just in time for Halloween. As you can see from the pictures, Harrison and Logan both went as Jengo Fett from “Star Wars” and Emma was Wonder Woman. The kids had a great time trick-or-treating. The day was much better than last year when Harrison had just gotten out of the hospital. When I look back at how far he has come I am reminded of just how blessed we are and remain grateful for the life of my child.

He has been attending school but without regularity. The separation from me has been very hard for him to handle during the school hours so we are just taking one day at a time. His teachers and the staff at The Davidson Day School have been so warm and understanding; letting Harrison take the lead and respecting his feelings and his needs. Again, we are blessed to have such amazing people in our lives.

As for what is next, we will return to NYC for another “test week” starting on Wednesday, November 16th. We will do the whole work-up; CT, MIBG, bone marrows, MRI, urine, and an ECHO. So many people have asked what they can do for Harrison. Well, we are really in need of nothing but your prayers for good health. I will continue to pray that this is the time that we will NOT find cancer. Please send Harrison your love, prayers, warm thoughts, and loving energy as we endeavor into this next week.

I will update as results become available.

I hope all of your children are well, healthy and happy.

With love,
Gina

Saturday, October 22, 2005 12:05 AM CDT

"We shall find peace. We shall hear angels,
we shall see the sky sparkling with diamonds."
-Chekov



I wanted to share with you that our very good and dear friend Michael Romano became an angel early Friday morning. We are devastated by the loss of this beautiful child and my heart is breaking for my friend, Sharon.

Michael was an angel on earth and now he is an angel with God.

We will always love and adore you Michael and we will always be grateful for how richly you blessed our lives. Michael, you are our diamond.

With love and sadness,
The Nichols Family and Rose and John Mollozzi (Harrison’s loving Grandma and Grandpa).

This is a picture of the kids (Michael, Harrison, Anthony and Frankie) enjoying dinner--one of their favorites--JAPANESE when they came to North Carolina this summer; it is a time we will always treasure. Please see the photo album for more picturs of Harrison and Michael.

Sunday, October 16, 2005 8:32 PM CDT

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It's not the load that breaks you down, it's the way you carry it.
— Lena Horne


Hello everyone; it has been a week or two since I last updated and I am so happy to share that Harrison is feeling much better this week than the previous two weeks. His energy levels seem to be returning and his appetite too. We spent the last days home, before we left for NY on Thursday evening, with Harrison attending school and doing “cool” kindergarten “stuff.” I was so grateful to see him finally doing so well. We even had time to take in the Pumpkin Patch with one of his friends and classmate Brittney and her mom Sue. The kids had a great time running around, picking pumpkins, and drinking fresh apple cider. Since we are heading back to NC the day before Halloween it was imperative that we had our pumpkin situation well under control before we left and we did! [see new pictures]

This weekend we attended a family wedding here in NJ. A great time was had by all and we want to wish Jonathan and Wendy a lifetime of love and happiness. Harrison was fortunate enough to have one of his terrific nurses from MSKCC stay with him while I attended the wedding. Rachel took great care of Harrison and he had a ball showing her all his Lego loot…and how at ease was I knowing that he had one of his favorite nurses caring for him?

Harrison’s spirits are high as Halloween approaches. His costume came by mail the morning we left NC so he was able to bring it with him to NY. Needless to say, he has been practically living in his “Jengo Fett” Star Wars outfit for the last 3 days! It is so nice to see him so happy and excited. I promise to post Halloween pictures…they are going to be so cute.

So, spirits are good here at the apartment and I am glad for that as we head into treatment on Monday. For the next two weeks, Harrison will complete the second cycle of heat-inactivated 3f8’s. I do not anticipate the treatment to be easy but we have taken some measures to hopefully help Harrison have an easier time. He has been taking Neurontin, over the course of the last few weeks, to help with the nerve pain and we started on Megace, an appetite enhancer, to help avoid the whole weight loss issue. So, tomorrow we will forge ahead, hopefully, taking one step closer to a cancer-free life for Harrison.

The last thing that I wanted to mention is that I know as faithful followers of Harrison’s journey you all are well aware how hard life is with neuroblastoma and every day his team of doctors work endlessly to find a cure for this wretched disease. But what many of you might not know is that Fred’s Team, a team of marathon runners that participate in the New York Marathon every year, runs to raise money for pediatric cancer research. Harrison’s amazing doctor, Dr. Brian Kushner, for years has run as a part of Fred’s Team. If you can, take a moment and check out his web page and if you are able please support Dr. K’s NYC marathon run and his efforts to help find a cure for Harrison and all his friends who are fighting for their lives everyday as he runs the Marathon on November 6th.

Well, that is all for now. Please keep those warm and loving thoughts and prayers coming Harrison’s way. Please pray that we are again blessed with clean bone marrow from this past Friday’s biopsies [I will post results as soon as them come in] and that Harrison endures these upcoming two weeks with the strength, courage, and little discomfort. And please continue to pray for our very close friend Michael Romano . He has been inpatient for three weeks now battling a lung infection. We love his family dearly and this has been a very difficult time. Thank you for checking in and I will update again soon.

With love and gratitude for all we have been given,
Gina


Tuesday, October 4, 2005 11:22 AM CDT

I find the great thing in this world is not so much where we stand, as in what direction we are moving.
—Oliver Wendell Holmes


Well, once again it has taken me a while to update. Honestly, I wanted to wait until I had some brighter news to share. The two weeks of antibody therapy left me a little shy in the “nice things to say” department. The treatment was very difficult and hard on Harrison. The therapy boasted most of the usual 3F8 side effects, pain, hives, low blood pressure, high heart rate and sleepiness. However, what I was unprepared for was the intense residual evening pain, the complete loss of appetite (we are talking morsels of food for 2 weeks) and the sleeping almost around the clock. As a result of all of this, Harrison has lost over one kilo (2.2 pounds) and most of his stamina. When Harrison had done antibodies in the past he always bounced back quite quickly and by the weekend was feeling fine. This has not been the routine this trip around, unfortunately. It has taken every bit of one week for Harrison to regain half of his appetite and energy levels. I really wanted to wait and update when I could share the news that Harrison was indeed feeling better and getting back to his “old self.” Thankfully, we still have two more weeks off for Harrison to continue to eat, play and attend school before we must return to NYC for yet another round of this therapy.

It was so hard watching Harrison struggle with this treatment. I felt so helpless in my efforts to keep him comfortable and happy. It was like my hands and feet were tied with rope as he was calling for my help. I must say I am not looking forward to returning so I am focusing my thoughts and energy on the above quote reminding myself to remain hopeful that we are indeed moving forward towards eradicating those refractory neuroblastoma cells. As a mother, with a mother’s heart, it’s becoming increasingly more difficult to continue making decisions to participate in these more devastating treatments. My whole life is focused on saving Harrison’s and it is a fine balance between saving his life and him having a life being careful not to loose sight of his happiness and well being along the way. In my wildest dreams I want nothing more than to have my child to love and cherish for the rest of his life, but I want him to be happy too. He is not happy about returning to NYC…I hope that one day when he is older he understands the choices I that I have made for him and why. I hope someday in the far away future to have the good fortune to share with him my part of our journey…of which I have no regrets.

For now, I would say that Harrison also has no regrets and he continues to amaze and surprise me as he moves forward, as six year olds do. He has been attending school for the last week, playing soccer [cautiously] with his team and spending most of his free time enjoying his best friend/cousin Logan. The boys have been inseparable since we arrived home parting only to sleep their “must have” ten hours every night. Harrison and Logan are so blessed to have one another; their love and friendship is unfettered amidst the chaos of Harrison’s rigorous treatment schedule. And I am grateful to Logan; he makes Harrison happy. Someday he too will know his part of our journey.

As for what lies ahead; we return to NYC for bone marrow biopsies/aspirates on October 14th and then begin cycle 2 of the dose escalated/modified/heat in-activated 3F8’s. Harrison will complete this cycle on October 28th, just in time to return to North Carolina to enjoy Halloween with his class. He CURRENTLY and I stress CURRENTLY plans to be one of characters from “Star Wars.” This plan does have a habit of changing every few days so who knows…stay tuned for post treatment news and Halloween pictures in a few weeks. Until then, I would be so grateful if you would continue to keep Harrison in your thoughts and prayers asking for his health, strength and the treatment’s success as we endeavor into the weeks ahead. I am still filled with so much hope and encouragement and the promise of cancer-free days ahead for my precious Harrison.

With hope,
Gina

Thursday, September 8, 2005 12:05 AM CDT

All I Ever Really Needed to Know I Learned in Kindergarten

“Most of what I really need to know about how to live, and what to do, and how to be, I learned in kindergarten. Wisdom was not at the top of the graduate school mountain, but there in the sandbox at nursery school.

These are the things I learned: Share everything. Play fair. Don’t hit people. Put things back where you found them. Clean up your own mess. Don’t take things that aren’t yours. Say you’re sorry when you hurt somebody. Wash your hands before you eat. Flush. Warm cookies and cold milk are good for you. Live a balanced life. Learn some and think some and draw and paint and sing and dance and play and work every day some.

Take a nap every afternoon. When you go out into the world, watch for traffic, hold hands, and stick together. Be aware of wonder. Remember the little seed in the plastic cup. The roots go down and the plant goes up and nobody really knows how or why, but we are all like that.

Goldfish and hamsters and white mice and even the little seed in the plastic cup—the all die. So do we.

And then remember the book about Dick and Jane and the first work you learned, the biggest word of all: LOOK. Everything you need to know is in there somewhere. The Golden Rule and love and basic sanitation. Ecology and politics and sane living.

Think of what a better work it would be if we all – the whole world – had cookies and milk about 3 o’clock every afternoon and then lay down with our blankets for a nap. Or if we had a basic policy in our nation and other nations to always put things back where we found them and cleaned up our own messes. And it is still true, no matter how old you are, when you go out in to the world, it is best to hold hands and stick together.”
—Robert Fulghum



This quote was sent home, by Harrison’s wonderful new teachers [Ms. Greci and Ms. Brown], on the very first day of Kindergarten. In light of what is happening in the world today I think it was just the thing to send home.

Well, I know I have been slow to update regarding all the test results. Many of my close friends have emailed and called anxious for the results and I love you for loving Harrison and me that much. I was waiting until the last of the news came in, which was just this morning regarding his bone marrows. So here it goes…

The news is good; actually it is really pretty good. The MIBG [nuclear med. scan] shows stable persistent disease in all the same places; thoracic spine, bilateral femurs, mid abdomen, and left supraclavicular area. This sounds like a lot but really the disease burden is small. Most of the uptake is due to lymph nodes and those areas are clearly demonstrated on both the CT and the MRI scans. The nodes in the neck [supraclavicular] and abdomen have remained subcentimeter and stable. And the small pieces on the spine [thoracic spine] are also stable and subcentimeter per the MRI. The echocardiogram is normal and his urine markers were about the same too.

The really BIG news is his bone marrow biopsies and aspirates. For the first time in Harrison’s history ALL 4 biopsies and ALL four aspirates were NEGATIVE showing NO evidence of disease. Yes, the presumption is that disease still does exist in the marrow but if MSKCC cannot find it that is good news! Needless to day Dr. Kushner was please with the news, this is what we have been waiting years to hear. So, although not out of the woods yet we are allowing ourselves to relish in this very wonderful news.

Now, as for what is next. Harrison will be participating in the new 3F8 Antibody Phase I trial that opened just a few weeks ago. Harrison will be one of the first 5 children in the country to participate in the study. It uses the same 3F8 antibody that is regularly used at MKSCC but the dose has been escalated to double and triple and the antibody itself has been warmed (temperature) so they are now called modified or heat-inactivated. Harrison will be on the first dosing level, which actually starts at double the dose of the standard amount. When Harrison was treated with 3F8 last year his dosing was 10mg/m2/day—the standard dose. The trial starts at 20mg/m2/day. A small heated portion of the 3F8 will be administered first, with the goal of controlling the pain that such a large dose of antibodies would typically deliver. Then soon after, the remainder of the 3F8 is infused. So far, with the few children that have gone before Harrison, the pain does not appear to be much more intense than it is with the standard protocol. Wish us luck, we start this Monday!!

Actually, aside from the pain that the treatment causes we are excited to begin this therapy. Antibodies have shown great promise in treating kids with very minimal disease. Our hope is that by administering a WHOPPING dose of antibodies children, like Harrison, who carry a moderate to larger disease burden will also benefit from these remarkable mouse antibodies.

Well, enough about treatment strategies and test results. Let me fill you in, on Harrison the 6 year-old, in less clinical terms. Tuesday was a very big day. Not only did Harrison’s bone marrow report stun us but Harrison was equally as impressive as he marched off to his first day of Kindergarten or the K2 as opposed to last year’s K1 class. I almost needed a “Margarita” with breakfast, negative marrows and the Kindergarten was a lot for this Mom to digest in one morning [smile]!! He has 2 terrific teachers who are team-teaching this year and Mike and I could not be more pleased. They are very kind and compassionate about Harrison’s situation and are more than willing to work with our crazy schedule. Logan, of course, is in Harrison’s class and is also having a great start of the year. Emma has transferred to St. Patrick’s, which is closer to her and Erin’s new home in the South side of Charlotte. She is thriving and is also enjoying her new Kindergarten class. I cannot believe all three kids are in the full time Kindergarten this year. I always remained hopeful and confident that this day would come but the emotions that accompanied it were ones I was not prepared for. When I re-read last year’s journal entry I was reminded of just how strong and amazing Harrison is…

“it was here, the day I had always been hopeful about but was ultimately unsure would ever come to pass. After all, so many beautiful children that Harrison has fought bravely along side of will never have the opportunity to attend the Kindergarten. To say we are blessed is severely lacking in magnitude. As he entered the room I desperately wanted to follow, taking care of his every need as I have for the last 5 years but instinctively I knew I should not. This was his time, his day. The warmly lit classroom only added to his radiance and the self-assured confidence that came with being a high school senior—high man on the totem pole—not a kindergartener who was embarking on his first day of real independence. But why shouldn’t he be confident, assured, and ready? After all he has taken on bigger things than this, hasn’t he? Yes, at the tender age of five he has already taken on fate, destiny, and given new meaning to the word faith. Kindergarten would be a breeze.”

I am overwhelmed with a cornucopia of emotions when I think about how much Harrison has endured and how far we have come since I wrote this last year. One whole year is a lifetime when fighting neuroblastoma and we have been more than blessed.

I will update again from NYC after the treatment begins. I hope you will continue to keep Harrison in your thoughts, praying that he remains strong and able to receive these life saving treatments until the cure is eventually found.

I hope all of your children are venturing into this new school year, proud, confident, and healthy too.

Overwhelmed with blessings,
Gina

Sunday, August 28, 2005 2:56 PM CDT

This was one of those perfect New England days in late summer where the spirit of autumn takes a first stealing flight, like a spy, through the ripening country-side, and, with feigned sympathy for those who droop with August heat, puts her cool cloak of bracing air about leaf and flower and human shoulders.
~Sarah Orne Jewett




Hello everyone; It has been becoming quite the “norm” for the weeks to just slip away from me causing my updates to lag behind. Sorry for the delay, I guess we have been enjoying the last delicious days of summer…the last swim dates, boat rides, late evenings and lazy mornings and roaming freely about on those warm sun kissed days. Soon the fall will set in and with the change in seasons vacations will come to a close, everyone will be back to school and work and stringent schedules will resume. But we will have had some wonderful summer days to look back on and smile.

I think when I last left off Sheila, the boys and I were taking NYC 6 year-old style. We ended-up having a great week and arrived home safely around the 13th of August. Our summer fun continued as Sharon, Michael, Anthony and Frankie made their way south and enjoyed a week with us in North Carolina. Unfortunately or fortunately, Michael came down with the shingles while they were visiting. I say fortunately because Sharon and I feared the pain he was having days prior to the rash was stemming from something far worse than shingles. Although disappointed, that it did restrict Michael’s swimming activities, we were most relieved “that it was JUST the shingles” and being the medical pros that we are we were able to navigate the rest of the week so that everyone was able to continue the fun. It’s funny for some families the break out of shingles would devastate a family vacation but for a family fighting cancer it was a mere bump in the road, easily managed and life moved on; it is all about perspective. If nothing else in having a child with cancer we have learned to take what we are given, never take anything for granted, and to make the best of everything for you may not get a second chance. Michael’s determination to forge ahead with the trip, despite the rash and pain, was a true testament to the unfettered spirit of a child. Michael has beaten neuroblastoma, a case of the shingles was no match for him. BRAVO Michael! The younger ones, Harrison and Anthony, along with Frankie were able to hit the beach, the pool and the battleship the USS North Carolina. Harrison even learned to fish off Johnny Mercer Pier. Meanwhile, Michael was treated to wonderful day of fishing with my Dad and his good friend Bob, who was gracious enough to host a day on the ocean in his boat. Michael even treated us to a fresh-caught Flounder dinner—DOUBLE BRAVO!! In the evenings, we enjoyed nice dinners and Grandpa taught Harrison how to play chess, which he is actually very good at. We really enjoyed having Sharon and the boys for a visit and held them to a promise not to wait another 2 years before they come again.

After the Romanos headed back north, Harrison and I spent the rest of the week just hanging out day to day. He had one visit with Dr. McMahon (our Charlotte based oncologist) who thought Harrison looked terrific and upon his physical exam, checked-out well too. But the rest of the week was just spent spending time together. Mike took Harrison out on the boat fishing—and other than soccer it seems to be his new favorite sport. Speaking of which, Harrison joined the town soccer team this year and practices started this past week. He was thrilled to be playing and is looking forward to the games in the weeks ahead. I am sure the web site will be privy to many future pictures of our little “Beckham.” Grandma and Grandpa were in town spending some time with Emma so we were able to visit with them too. Harrison even had a sleepover with Emma at Auntie and Jason’s house. So the last few days of summer were well spent with family and friends.

Today, along with the last days of August and the markings of the end of summer, also came a personal thrust back into reality as Harrison, Grandma and I returned to New York, this morning, in preparation for the beginning of “test week” tomorrow. Harrison will have a full work-up this week complete with MRI, CT scans, bone marrows, an echocardiogram, a MIBG, and urine collection. After the work-up, treatment options will be discussed and a plan of action will be underway. In the meantime, Harrison and I will hopefully return to Charlotte this coming weekend so he can attend his first day of K2 at the Davidson Day School on September 6th; a day we are all excited for.

So, my goal for today is to try and inhale a deep breath, let it out slowly and try not to let the anxiety of “test week” get the better of me. Harrison looks terrific on the outside, has great energy levels, is eating well and his counts have recovered nicely from his 22nd cycle of chemotherapy. I pray that his scans reveal a great looking and healthy inside too…I pray that there is a therapy out there that will continue to help Harrison keep his remaining disease at bay while allowing him to continue with a happy life, a life every child is entitled to live…I pray for Harrison’s life and the lives of his friends…please remember Harrison and his fellow fighters in your prayers too.

I expect to have some results and perhaps the beginnings of a plan by late Friday afternoon or Tuesday at the latest. I will post as a soon as results become available. Until then if you check on us please take a minute and leave a note in the guest book; you all have no idea how much it helps to know how many people are praying and sending love to Harrison. I do read him the entries and he enjoys hearing them.

Have a wonderful last few days of summer, may your children enter the new school year rested, happy, and healthy and may the fall season be a time of settling into old, comfortable and familiar patterns.

With gratitude for sharing another wonderful season with my son,
Gina

Thursday, August 11, 2005 9:03 AM CDT

Outings are so much more fun when we can savor them through the children's eyes.
—Lawana Blackwell


Well, the end of cycle 22 of chemotherapy is drawing to a close and soon we will be leaving for North Carolina and our two-week break. Harrison has done remarkably well this cycle with no vomiting, as of tonight. Perhaps it is just a “good” round of chemo or more likely it is having his best friend in the whole world with him this week. Logan has been a wonderful distraction for Harrison and Sheila has been great company for me. I cannot believe how much energy Harrison has and how much we have done this week. We arrived in NYC last Thursday evening, spent Friday at the pool and Saturday in NYC with our friends the Romanos (Sharon, Michael and Anthony). We had a great time being New York tourists. We took the 90-minute ferry tour of Manhattan, had lunch at Carmines and finished the day with a trip to Toys ‘R’ Us, in Times Square, including a ride on the giant Ferris Wheel that sits in the middle of the store. On Sunday, we spent the day doing some shopping and preparing for the week. Monday was mostly taken-up with a 5-hour clinic day—welcome to Mondays at MSKCC. Tuesday we headed into the city early to hit the American Museum of Natural History. The boys really enjoyed the Dinosaur exhibit and the Marine section; we even stopped to see the IMAX show, “The Living Sea.” Today, we again hit the city early and walked Central Park. The weather was magnificent for a day at the park and the boys ran around exploring the Zoo and later had a terrific time at the 72nd street boat basin. We rented them remote controlled sailboats and they had an absolute blast. It was hard to make them leave the boats to begin day 3 of chemotherapy. Nonetheless, we headed out of the park and enjoyed lunch at a local Bistro before heading to clinic. We have had a great week but Sheila and I are pooped; I am hoping that tomorrow the boys will be happy with sleeping-in but I have a feeling we are up for another adventure of some kind. Truth be told, as long as Harrison looks and feels this good I am up for any adventure he has in mind. We are so blessed to have him endure 22 cycles of chemotherapy, 6 months of Arsenic Trioxide, 7 cycles of antibodies, 3 surgeries and over 30 days of radiation therapy totaling 3 years, 2 months and 29 days [but who’s counting] and still have such a vitality about him—he is truly a force to be reckoned with and our miracle!

We will be heading back to NC on Saturday and then we have another exciting week planned. Sharon, Michael, Anthony and Frankie are all coming to North Carolina to visit us. We are thrilled to have them and have a great week in store for everyone.

Harrison and I will return to NYC the last week in August for “test week.” These tests will help us determine which therapy Harrison will have next. Please continue to keep him in your prayers; they are being heard. He is having a great summer in-between chemo cycles and tests and feels great.

Don’t forget to check out the WONDERFUL pictures of Harrison and Logan, our NYC explorers!!!!

We both hope you all are having a great summer too…it can be an amazing time of year when it is seen through a child’s eyes.

Warmly,
Gina


Tuesday, August 2, 2005 11:17 PM CDT

No great deed, private or public, had ever been undertaken in a bliss of certainty.
—Leon Wieseltier


As our time at home draws to a close, I thought I would update before the busy weekend of travel is upon us and a week of chemo begins. The days have just flown by this trip home but we were able to enjoy ourselves. We arrived home just one week ago and the very next day Harrison had his big oral surgery. All went well. He was in the O. R. for four hours. He had 5 teeth extracted, 2 crowns, 3 composites and a good cleaning. We are thrilled to have that all out of the way and Harrison’s mouth is so much healthier and looks great too.

After the trauma of a day in surgery, Harrison wanted to head out to Grandma and Grandpa’s house on the coast of NC. Beach request?? No problem…so off we went picking-up Auntie (my sister) and Emma (my 5 year-old niece) along the way. Although it rained nearly the entire weekend, it was great to spend some time with my sister and Emma. We had a few really nice meals, relaxed, slept in and we even managed a few hours at the pool (see photos). This week has mostly been spent getting ready for NYC and doing some dull house maintenance “stuff” like cleaning closets and laundry. In fact, I was getting ready to begin my third closet, this afternoon, when I stopped to check email and a few of Harrison’s fellow NB fighter web sites. When I read Hazen’s page, Susan [Hazen’s mom] in her journal entry reminded me how wonderful it was to just stop and savor moments with our children, to just soak up their smiles, their laughter and their love. Something that I usually do daily had some how escaped me, over the last 2 days, in my frenzy to clean and organize. So, I traded my in my “Clorox Clean-Up” for a bottle of suntan lotion and headed for the pool, along with Sheila, Logan, and Harrison. And spending the afternoon swimming and laughing with him was worth having a messy closet and a pile of laundry. Thank you Susan for reminding me how important every moment of everyday is…it is so nice to have friends moving through this journey with you who really understand what it means to cherish the moments as they are gifted to us.

On Thursday, we will forge ahead to NYC. This time Aunt Sheila and cousin Logan will be accompanying Harrison and me. We are heading up a few days before the chemo so that the boys can take advantage of what the city has to offer before the “yucks” of the drugs set-in. We are hoping to get to Central Park, the Museum of Natural History and, of course, at least one excursion to the Toys ‘R’ Us in Times Square to ride the Ferris Wheel. It is a rather ambitious weekend plan but we are looking forward to it. Harrison is actually really excited to have Logan coming this trip and I hope it will be a nice distraction from an otherwise crummy week.

And as always what lies in the weeks ahead is uncertain but like the quote says “no great deed…had ever been undertaken in a bliss of certainty;” Harrison’s life has been a testimony to this.

We hope you will continue to keep Harrison close to your hearts and in your prayers.

With love,
Gina


Wednesday, July 20, 2005 7:05 PM CDT

Remember happiness is a way of travel—not a destination.
—Roy M. Goodman


Well, my promise to update once we arrived in North Carolina has come and gone. Sorry for the delay but life has been busy for us. Our time home was filled with some good family dinners, swimming at the pool, Logan’s 5th birthday party, finally seeing the movie “Madagascar,” spending time with Daddy and a few sleepovers with both Logan and Emma. All in all, our time home was medically uneventful for Harrison and filled with fun and that is the way it should be!

So, after 10 fun-filled days at home, Harrison and I returned to NYC for cycle 9 of Irinotecan/Temodor and cycle 21 total of chemotherapy. The nice thing about coming back this time was that Grandma and Grandpa had returned safe and rested from Europe and Grandma picked us up from the airport. Harrison was excited to see his Grandma [his #1 Lego girl] and has been enjoying his time in the evenings playing with her. Grandpa has gone back to Wilmington but will return this weekend to NYC; he does not know it yet but he has “pool duty” this weekend, as Grandma and I are pooped already.

The week has been going relatively well. Monday was a good day and the chemo seemed to present no real problems. Harrison’s cell counts have been very good so we started Monday in a good place. Tuesday evening did however present with some vomiting and a very late night elevated temperature. Thankfully, the pediatric fellow on-call and our attending were comfortable with allowing Harrison to remain asleep in his bed at home with the promise that if things got worse that I would immediately head to Urgent Care—no problem. Harrison did sleep peacefully through the night despite the fact that I was up taking his temperature every hour on the hour until finally getting-up at 5 am and heading to clinic. As it turns out, the fever left as quickly as it came and the suspected culprit (his lungs) turned out to be clear, in the chest x-ray we did at 8 am this morning; he is feeling great tonight with no problems at all today. So the mystery fever is gone, hopefully, to never return, at least for this cycle.

Thankfully, there is little else in the excitement category to report. We plan to finish out the week of chemo; stay through the weekend to make sure all is well and head home around Tuesday. Harrison has a big oral surgery scheduled in the O.R. at the hospital at home, with his dentist. The anti-cancer treatment regime over the course of the last three years has really taken a toll on his teeth. We are doing some work to save some old teeth, give his new teeth a fighting chance, and remove those teeth that are too far gone to be saved. We are doing all this to continue to give Harrison the best quality of life while he remains in treatment and that includes good oral hygiene.

The plan, for now, is to then return to NYC the week of August 8th for cycle 10 of the same combo of drugs and then re-scan Harrison at the end of August to yet again determine the next course of action.

I will update again when there is more news to share. Until then MY plan is to do my best to use “happiness as a way of travel” and give Harrison a great summer with continued trips to the pool, a trip to Grandma’s house at the beach and some excellent play time with friends and family. I hope wherever your summer travels lead that they are filled with happiness too.

Warmly,
Gina

Sunday, July 3, 2005 3:09 PM CDT

We cannot direct the wind, but we can adjust the sails.
—Bertha Calloway



Sorry, it has taken me so long to finish the updates on the rest of Harrison’s test results. Being here alone, in NYC, with Harrison has definitely given me a new appreciation for my mother, who selflessly accompanies Harrison and me to New York every trip. These past two weeks she and my father have been vacationing in Northern Italy, a trip they both really deserve and I have been on my own. I am not complaining; so many parents are always on their own facing these difficult times with no help whatsoever. But it does make for some busy days and my time is so consumed with taking care of Harrison that it has left little time for much else. So, with that aside, let me fill you in on the rest of the results…

The MRI of the spine shows that the paraspinal piece that we radiated in December is continuing to respond to treatment and has decreased in size again, this is very good. The CT of his chest, abdomen and pelvis show NO new disease and the abdominal node that we have been watching since November, too, has decreased in size indicating a response to treatment. The bone marrows are still positive for neuroblastoma in one out of four sites, this is no more or less than last time so his marrow is still considered as having stable disease. Dr. Kushner seemed please with these results and overall was feeling positive about continuing on this current course of therapy for 2 more cycles, which takes us to the first of August.

We started cycle 8 of Irinotecan/Temozolomide on Monday and completed it Friday. The beginning of the week was off to a rough start and I nearly ate my words from my last journal entry. The part about loving every minute with Harrison in “good” times and in “bad” was definitely up for grabs on Monday. All was going well, he was finishing his one-hour IV infusion of Irinotecan and had just taken his oral Temozolomide when he threw it right back up, both capsules, still whole. Well, he was not happy about that and of course they had to be retaken. So off went Maureen, Harrison’s number one nurse to tell the pharmacist what happened and that we needed another round of oral chemo. While she was gone, I explained to Harrison that he must indeed retake the pills and in his very six year-old style and in no uncertain terms declared that he was in no way shape or form retaking the pills for fear of throwing-up again. This was a difficult point to argue and I could not promise that he would not get sick again but after all it was chemo and not just a Tylenol so not taking it was not an option either. So…after 30 minutes of negotiating, that ranged from flat out bribery to bold threats his lips were still clenched and we were at a standoff…UMMM…time to call in back up!

The neuroblastoma families are definitely lucky in at least one way and that is that our team of nurse practioners and doctors are truly amazing. So desperate for Harrison to take his chemo, I called in some help from Ursula and Linda, two of the terrific PNPs from Harrison’s team. They, too, exhausted efforts at compromise, bribes and threats and in the end we were forced to have the pharmacist open the capsules and mix the powdered contents into a strong cherry syrup in a syringe, then unfortunately we had to restrain Harrison and force it down. Needless to say, much of the syrup was spit back into Ursula’s hand but she very professionally re-suctioned it back into the syringe and then back into Harrison’s mouth. This cycle repeated itself several times but we were, however, able get it all into Harrison. Then in-between giant sobs, he asked for milk to wash down the syrup and of course I complied only to find myself, moments later, with my face and shirt dripping and from milk…yes you guessed it; he was fighting mad and he was going to let me know it. And that is how the week started…”in good times and in bad.”

I am please to report that the rest of the week was not nearly as dramatic and after some careful switching around of Harrison’s anti-nausea meds he only threw-up again on Friday, well after he had taken his pills, thankfully.

So, with cycle 8 of Irino/Temodor (cycle 20 total of chemo) behind us the weekend has started off well. Due to the holiday, flights were difficult to get so Harrison and I are going to enjoy the 4th of July from our apartment. We are very fortunate to be able to have this terrific apartment with the view of the New York Harbor and the Statue of Liberty where the fire works will be set off. And getting Mike to NYC was actually easier than getting Harrison and I home so he flew in Friday evening for the weekend. Harrison was so happy to see his Dad. We spent today by the pool enjoying the beautiful weather and some good family time with thoughts of cherry syrup, syringes and sour milk far behind us! Mike will fly home on Sunday evening [he has to work Monday] but Harrison and I will have friends over for dinner and fireworks on Monday.

I hope you all have a safe and happy holiday weekend. I will update again from North Carolina next week.

With love and gratitude for my life with Harrison,
Gina


Saturday, June 25, 2005 9:43 AM CDT

We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.
Joseph Campbell
US folklorist & expert on mythology (1904 - 1987)



Good morning everyone, this quote really makes you think about life doesn’t it. This is sure not the life I had planned for Harrison, Mike, and I but it is so true that I had to let go of the expectations I had for our life together in order to make the best of the life that was waiting for us. I found that when I spent time dwelling on the life I wished I had it made it so much harder for Harrison and I to navigate the life we have been given. When I am able to cherish the moments I am currently experiencing, both good and bad, there is so much more joy in our lives. This is not always an easy task but one I must challenge myself daily with. Often I fail and long for the days before cancer but even during those times I can sometimes see that I have been given an opportunity that most parents will never have; and that is to have an absolute appreciation for every moment with Harrison, every good and bad behavior he has, every expression on his face, and every moment that I can touch, hug and kiss him. You never really think about those things until you face the possibility of a life without your child and the inability to touch them or smell them or hear them again. I have so many friends whose children have become angels and what they would not give to have just one more moment with their precious children. Because of what those parents have taught me, I will strive to always remain grateful for my life with Harrison in good times and in bad.

And speaking of good times I would like to share some of the test results that are in so far…

Of course, not everything has been reported yet but so far so good…the CT scans of his brain, orbits (eyes), and neck all are stable with no new disease to report. This is very good news meaning that Harrison has no brain metastases, no new lymph node disease in his neck, and no new disease on his orbit bones that were radiated over a year ago. In addition, the MIBG scan reports stable disease and NO NEW spots appreciated; again good news for Harrison. His urine markers dropped again; his VMA=7 (<8 is normal) and his HVA=12 (<14 is normal), this is his best HVA yet and we are still within normal range on both numbers. Friday morning we completed his bone marrow biopsies and MRI of the spine so those results will not be available until next week and the CT of the chest, abdomen and pelvis were not read yet. So based on the results so far, I am not expecting any real surprises. Dr. Kushner must not be expecting any surprises either since he has booked us for treatment on Monday, which is the same chemo cocktail we have been doing since December. So for now, it sounds like Harrison is holding his own and we are going to continue on the same course of drugs for a while longer.

That is the medical update, PHEW!! As for Harrison he is doing just fine. He is feeling great, with the exception of sore hips and back from the marrows. We are looking forward to enjoying the weekend with some friends and a pool party tomorrow. I will update again as more results become available.

Thank you for checking on Harrison, for all the beautiful thoughts and prayers and for the encouraging and thoughtful guest book notes. It makes such a difference knowing how many people care for Harrison and he enjoys when I read him the notes aloud.

With love and appreciation for the life I have been given,
Gina

Tuesday, June 21, 2005 5:59 PM CDT

The gifts we treasure most over the years are often small and simple. In easy times and in tough times, what seems to matter most is the way we show those nearest us that we’ve been listening to their needs, to their joys, and to their challenges.
—Author unknown


Hello everyone and speaking of “gifts we treasure most over the years” Disney was definitely one of those gifts! We all had a wonderful time and I cannot express the joy Mike and I felt watching Harrison so full of energy, life, and smiles. He is already asking, "when can I go back!" Our family will truly treasure this trip for a lifetime.

Well with the magic of Disney soon behind us, we have returned to reality and Harrison and I are already back in New York. We flew-up early this morning in preparation for “test-week” to begin tomorrow. The big days are, however, Thursday and Friday. In these two days Harrison will endure a MIBG scan, CT scans of the chest, abdomen, pelvis, neck, and orbits, a MRI of the spine, and last but not least bone marrow biopsies and aspirates. By late Friday afternoon, we should have some idea of what our next plan should be. And if all goes well, we will begin some form of treatment on Monday.

Usually by test week my nerves are raw and anxiety levels take on a whole new meaning. However, after coming off the high of Disney I am not nearly as nervous as I usually am. I can’t help but be positive after seeing my child climb rock walls (see photos), trampoline jump, beg to do the high slide at the water parks, not take one nap for 7 days, brave the 100 degree temps in Florida and ask when we are going back, and eat enough for 2 children. His stamina, healthy glow, and overall energy levels hopefully will all translate into good things this week.

Please say some extra prayers for Harrison this week. I am praying that his disease burden has lessened or remained stable. I will update as the results roll in but it may not be until the weekend.

Thank you for stopping by and I hope you all get as much joy from viewing the Disney photos as I did taking them. I will cherish that trip always.

Here is to hoping Harrison looks as healthy on the inside as he does on the outside,

Gina

Monday, June 13, 2005 8:18 PM CDT

Hello from WALT DISNEY WORLD!! We are having a blast; Harrison and Logan can barely contain themselves they are having so much fun. I cannot even express to you all how great it is to see Harrison truly enjoying himself and forgetting about “real life” for a while. We arrived in Florida late Saturday afternoon and spent Sunday morning having breakfast with Mickey and his friends. The rest of Sunday was spent in the Magic Kingdom riding the “Buzz Light Year Mission” ride, “Splash Mountain,” and the “Big Thunder Mountain.” This is Harrison’s first trip to an amusement park and I am amazed at his bravery and lack of fear. Sunday evening we attended a Medieval Times dinner complete with knights and jousting. And today was spent finishing-up at the Magic Kingdom. Tomorrow we are off to “Typhoon Lagoon,” a water park and later in the week Animal Kingdom, MGM studios, and then Sea World so look for more updates.

Well, that is all for now. I am not writing a long update I just wanted to let everyone know that we are more than well and having fun! Enjoy the pictures!

Enjoying Disney through my son’s eyes,
Gina

Thursday, June 9, 2005 2:38 PM CDT

For every minute you spend angry you loose sixty seconds of happiness.
-- Ralph Waldo Emerson





Hello everyone, I hope this update finds you all doing well. We are doing just fine. Harrison and I arrived home, safely, thanks to another amazing Corporate Angel Flight on Thursday evening, June 2nd. Since then life has been in full swing with checking Harrison's cell counts three times a week, attending a day or two of school for Harrison and some much needed R&R on the Lake (see pictures)!!

Harrison’s white cells have been a little slower to recover since this last cycle of chemotherapy and whatever that stomach bug was I guess didn’t help. We are, however, still on for our trip to SUNNY and HOT HOT HOT Florida on Saturday just in time for brunch with Mickey and his pals on Sunday morning. Aunt Sheila has done a wonderful job of organizing our trip and planning days filled with fun! Thank you, Aunt Sheila.

Harrison is beyond excited and has worn himself out packing for the trip (see pictures—smile). He seems to be feeling great and has tons of energy. He and Logan have daily talks about the week-long sleepover that they are going to have at Disney, I wonder if we will get any sleep at all they are so excited!!

Well, that is all for now. Please pray that Harrison has a wonderful time at Disney and that the week is medically UNeventful for us all!!

Shamefully excited about Disney too,
Gina

p.s. I will update again from NYC, we are due back there just 2 days after we return from Fla. for “scan-week” so please keep Harrison in your thoughts for the week of June 20th.


Wednesday, June 1, 2005 1:49 PM CDT

I just wanted to let everyone know that Harrison is doing fine. He was released from the POU on Monday and moved into a regular room on the floor and on Tuesday afternoon, around lunchtime, we were released from the hospital altogether. Today we went for a follow-up visit to clinic and Harrison counts were good and they seemed please with how he was doing. Overall, I think he feels much better and the general consensus was that he just had a 24-hour stomach bug. Thankfully, no other issues arose and Harrison and I were cleared to leave for NC. We will be flying home tomorrow evening and we are more than ready to start enjoying our 3 weeks off and begin preparations for the big trip to Disney!

I hope to update again in a week or two. Thanks for checking in on us and for the prayers for Harrison’s quick and safe recovery! I am grateful it was just something as “normal” as a stomach bug, sometimes we do forget that kids with cancer are once and a great while allowed to have something entirely benign happen to them.

With gratitude,
Gina

Monday, May 30, 2005 11:30 AM CDT

What lies behind us and what lies before us are tiny matters compared to what lies within us.
—Ralph Waldo Emerson




Hello everyone, it has been nearly one month since my last update! And things are ok. Let me give you all the details since we arrived home on May 10th, after the last cycle of chemo. Harrison really enjoyed our two weeks home, attending school, playing in a soccer game, and just plain being 6 years old. His class had a terrific field trip to the Asheboro Zoo, which we all were able to enjoy. I owe you all some great pictures of the zoo, but do not currently have my camera to post them…so stay tuned for those! I was able to enjoy some good down time too, doing normal things like dinner with friends (thank you Chip and Gina for a great evening) and attending a Louisiana style Crawfish boil!

After a really great two weeks home, we arrived back in NYC on May 23rd, as planned for his 7th cycle of Irinotecan/Temezolomide, which now makes a total of 20 cycles of chemotherapy, WOW! Harrison really did very well with this last cycle. He was in good sprits, full of energy, and ate well. He even spent Saturday at the outdoor pool at our New York apartment during its first day open. He spent the whole afternoon swimming, diving for toys and had a great time. We were scheduled to return to North Carolina on Sunday morning and then as things go in the life of a child with cancer the unexpected hit and Harrison begin vomiting in the middle of the night on Saturday. He was pretty sick until early Sunday morning and required a trip to the hospital in NYC. As it turned out, in just a few short hours he was on his way to being fairly dehydrated, and had low-grade fever. Due to these symptoms Harrison’s blood pressure dropped to a level that made everyone a bit uncomfortable, so he was given several large bags of IV fluids and we were admitted to the Pediatric Observation Unit (the POU) for at least an overnight observation.

I am please to report that Harrison’s pressure and other stats were stable throughout the evening and he is doing well today. We will, of course, stay another evening inpatient to insure that he does not have a bacterial infection in his line, and to monitor the blood pressure for another 24 hours. He is taking small sips of Gatorade and is generally in good sprits watching his favorite DVDs.

My personal diagnosis, or hope should I say, is that he had a 24hour stomach bug but, of course, when you have cancer, and are within 24hours of finishing chemotherapy there is no such thing as just a stomach bug—we need to go through the overnight inpatient stays, blood cultures, urine cultures, IV anti-nausea drugs, and round the clock IV fluids. Someday it is my hope that Harrison will just be able to have a normal stomach virus, stay home, take some Tylenol and suck on an ice pop! But for now, we will do everything we have to, to keep him safe.

What’s next? Well, after he recovers from whatever this is it is our hope to fly home. Harrison has the next 3 weeks off from treatment and we actually have a trip to Walt Disney World planned for June 11-18th. After that, Harrison is due back in NYC for a full test work-up, June 22nd – 24th to again determine the status of his disease and determine the next treatment plan.

So, please pray for a stomach virus, no line infection and that Harrison will make his trip to Disney World—he so deserves it! Well, I guess that is all for now. I will most likely post a brief update in a day or so and let you all know how things turn out. Please keep Harrison in your prayers for a safe and speedy recovery!

Thank you for checking in on us.

Warmly,
Gina

Monday, May 2, 2005 5:08 PM CDT

THE ROAD NOT TAKEN

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference.

—Robert Frost



While in school and later when teaching High School English this was always one of my favorite pieces of poetry. Today, in clinic, as Harrison began his nineteenth cycle of chemotherapy, I was reminded, in similar words by another parent that Harrison has indeed taken the road less traveled “and that has made all the difference.” Later in the afternoon, we ran into Dr. Modak who asked me how Harrison was doing and with a huge smile I replied, “in this moment we are feeling blessed.” And we are blessed. When I last updated we were waiting for a few more test results. The bone marrow reports and the MIBG also supported the overall consensus that Harrison’s disease status remains stable/or slightly improved.

So after a round a of chemotherapy the week of April 11th we returned home to North Carolina where we have enjoyed the last two weeks doing very normal things. Harrison attended school, had his 4th tooth pulled (UGH!), celebrated his cousin Emma’s 5th Birthday (see gym party pictures and The Band pictures) and basically enjoyed time with friends. Harrison is doing very well; feeling great, and overall seems terrific.

Last night we returned to NYC to begin another cycle of Irinotecan/Temozolomide. When we arrived at the apartment it was later in the evening and each time I look across the New York Harbor the illuminated view of lower Manhattan and the Statue of Liberty always takes my breath away. Yes, that fact that my 6 year-old has cancer and has to do chemotherapy is tragic but each time we return to New York I am so aware of how blessed we are to be here in this wonderful city, with an amazing group of doctors and nurses and with Harrison still fighting. So when Dr. Modak asked me today, “how is he?” I was grateful to give my answer.

Harrison will complete this round of chemotherapy on Friday and shortly after we will return to North Carolina to again enjoy a two-week break. We will return to the Big Apple for his twentieth cycle of chemotherapy on May 23rd after which we will reevaluate Harrison’s disease status with another full test week.

I will keep everyone posted and I hope you all have a healthy, happy and enjoyable summer.

Warmly,
Gina

Saturday, April 9, 2005 8:09 AM CDT

I believe it’s a fact of life that what we have is less important than what we make out of what we have.
—Author unknown


Well, all the results are still not in but I know so many of you are waiting for this update so here it goes… First, let me say thank you to all those who were praying extra for Harrison this week. Our family has received many private emails and phone calls as well as the wonderful notes of encouragement and love that were left in the guest book of Harrison’s web page. And it is with great joy that I am able to report that Harrison’s scans (the ones that are officially in) show that Harrison has indeed had a response to these last few rounds of chemotherapy and his disease burden is lessening and improving. All of your wonderful prayers and good wishes have been well received.

For those of you wanting the medical details here it goes… The CT of Harrison’s abdomen shows the abdominal node, that appeared in November but that currently is going unnamed as “neuroblastoma,” has again shrunk in size from 2.1 x 1.7 cm to 1.8 x 1.5 cm. His chest CT scan shows the paraspinal piece that we radiated in December has also shrunk from 1.9 x 2.0 cm to 1.3 x 1.5 cm. These are considerably good results. Harrison additional CTs of the head, brain, orbits, neck, and pelvis were all clean of disease, thankfully. The MRI of his spine shows “no interval changes” and “no new lesions appreciated.” This is all very good news. In addition, his urine markers dropped again putting Harrison within normal limits. His VMA=8 and his HVA=14, these are his lowest numbers yet. The bone marrow results are still not back nor is the MIBG scan but Dr. Kushner looked at it and he felt that there was some improvement in that scan as well. Official results should be available on Monday.

So, after a great meeting with Dr. K this afternoon, who seemed very optimistic about the test results, we determined that Harrison would continue on this current combination of drugs (Irinotecan/Temezolomide) for at least 2 more cycles taking us through the middle of May. I am thrilled with both the test results and the current treatment plan. Harrison tolerates these drugs very well with little side effects and will able to continue on with all of life’s exciting activities such as school, birthday parties, and riding his 4-wheeler! We will begin treatment on Monday, for 5 days, and then head home for a 2-week break until the next cycle.

Our family is so grateful to have such good news to share. We still have a long road ahead and Harrison by no means is cancer free YET but it is not often that any neuroblastoma family is able to enjoy such news; I am well aware of how fortunate we really are. We will continue to love, support and guide Harrison through his battle with cancer, “so, watch out neuroblastoma here comes Harrison!”

Again, thank you all for the continued compassion, prayers and caring for Harrison and for checking in on us. We are still here and still fighting!

I will post again as soon as more results are available.

And lastly, let me say HOORAY! for our friends Michael R who just received his second cycle of ABT-751 and is doing well; and for Christi T, who just scanned and like Harrison has never been without disease but is stable after 2 ½ years and is beginning year 2 of ABT-751—you go Christi!; and for Crawford, who scanned this week and has again been declared NED!; and prayers for Bryce, who had his 3-month scans Thursday and Friday. This is one terrific group of kids, who absolutely deserve to beat neuroblastoma and are doing a great job at it!

With love and gratitude,
Gina, the very proud Mom of Harrison, cancer fighter and survivor for nearly 3 years.




Tuesday, April 5, 2005 8:10 PM CDT

Hello everyone, I just wanted to let you all know that Harrison, Grandma and I arrived safely in New York yesterday morning for Harrison’s “test week.” Since yesterday, Harrison has undergone CT scans of his chest, abdomen, pelvis, orbits (eyes), head and neck; an MRI of the spine; bone marrow aspirates and biopsies; an MIBG injection; and of course, a 24 hour urine collection. Tomorrow, Harrison will have his MIBG scan and the work-up will be complete. I am anxious for the results to roll in and I will update on Friday, as almost everything, with the exception of bone marrows, should be available.

Harrison looks and feels great so I am hopeful or as we say in the “cancer world” cautiously optimistic that the scans will show Harrison to be at least stable with no new disease. Please pray that all goes well for us this week and that Harrison continues to remain as healthy as he is today. We, of course, are always praying with each set of scans that we may someday hear that Harrison is free of this awful disease but I will be most grateful just to hear that he is stable and that he will be able to continue enjoying the sixth year of his life even if it is filled with a year of treatment; we are ready to fight as long as we have to.

Dr. Kushner and I will meet towards the end of the week to discuss Harrison’s treatment options based on the test results. Please pray and check back with us late Friday afternoon. I hope to be sharing good news and our future treatment plans with you all. Until then… be well and enjoy each day.

Gina

Friday, March 25, 2005 10:31 AM CST

The Story of the Butterfly

One day a small opening appeared on a cocoon, a man sat and watched the
butterfly for several hours as it struggled to force its body through that little
hole. Then it seemed to stop making any progress. It appeared as if it had
gotten as far as it could and it could go no further. So the man decided to help
the butterfly, he took a pair of scissors and snipped off the remaining bit of
the cocoon. The butterfly then emerged easily. But, it had a swollen body and
small, shriveled wings.
The man continued to watch the butterfly because he expected that, at any
moment, the wings would enlarge and expand to be able to support the body, which
would contract in time. Neither happened! In fact, the butterfly spent the
rest of its life crawling around with a swollen body and shriveled wings. It
never was able to fly. What the man in his kindness and haste did not understand
was that the restricting cocoon and the struggle required for the butterfly to
get through the tiny opening were God's way of forcing fluid from the body of
the butterfly into its wings so that it would be ready for flight once it
achieved its freedom from the cocoon.
Sometimes struggles are exactly what we need in our life. If God allowed us
to go through our life without any obstacles, it would cripple us. We would
not be as strong as what we could have been. We could never fly.

I asked for Strength... And God gave me Difficulties to make me strong. I
asked for Wisdom... And God gave me Problems to solve. I asked for Prosperity...
And God gave me a Brain and Brawn to work. I asked for Courage... And God
gave me Danger to overcome. I asked for Love... And God gave me Troubled people
to help. I asked for Favors... And God gave me Opportunities. I received
nothing I wanted, I received everything I needed.

—Author Unknown




I really love this story. I think it has a wonderful philosophy/perspective on how to approach life, especially when we are faced with almost unthinkable challenges, like your 3 year-old being diagnosed with a cancer for which there is no cure. It makes the journey much easier and happier for Harrison to try and face each day with grace and courage rather than with fear and anger. There are days when we hit bottom and cry, scream and are devastated for what Harrison must endure but messages like this story always help me to see the other side of life’s challenges and the day is much easier to conquer when I am able to see our journey as one of faith, opportunity and love rather than just being dealt a band hand. I hope this story in some way carries a personal message for those of you reading it today.

Well, we are out of the hospital, as of Wednesday evening. It has been determined that Harrison did indeed have something viral that did not require any more toxic antibiotics, just some Tylenol for the fevers so we headed home. Unfortunately, “scan-week” in New York has been postponed for a week, giving Harrison’s body time to recover before the rigorous week of tests begins. So, it looks as though we will be home for another week or so, taking it easy and keeping Harrison low-key, which should prove to be a difficult task based on how well he currently feels. I will post again when the NY travel plans are set. Now for the good stuff…the birthday update and fun pictures.

Let me start with last Thursday evening, the school play, “Go Fish.” It was so great to see Harrison, his classmates and his cousins, Logan and Emma, on stage with their sea creature hats singing and dancing. I had kept Harrison out of school all week long due to the illnesses of his classmates but decided to let him attend they play. He was feeling so great and he was just begging to go. I think one of the hardest things about your child having cancer, other than the obvious is trying to give them somewhat of a normal life filled with some pleasures and trying to keep them safe and germ-free at the same time. So you make choices, hope they are the right ones and roll the dice—Harrison went to the play and had a ball—Mike and I were so proud it was a very emotional hour for all of us. Grandma and Grandpa even drove in from the beach to see their three grandchildren perform and they all were wonderful (see cute pictures of Emma the crabby crab and Harrison and Logan as sea horses; they had duel roles as both an electric eel and a sea horse).

The next day, Friday, Harrison’s birthday was a true success and he had a wonderful time. On Friday afternoon, Mike and I gave him his present from us, a four- wheeler. Harrison loves to run and play with the kids in the neighborhood but often does not have the stamina to keep-up on a bicycle so this is perfect for him to enjoy riding around “the hood” with all his friends. Later that day was the big “Dino-Dig” and it was great. The party started with an interactive educational presentation, a tour of a touch-friendly dino-exhibit, a T-Rex cake and ended with a private fossil dig. The kids had a wonderful time and learned a great deal about dinosaurs. Harrison was thrilled to have had his party there and seemed genuinely happy all evening (see pictures).

Saturday was spent playing with his cousins and the kids in the neighborhood and enjoying his new presents.

And then Sunday was the fever… you all know the rest.

Until the next update…be well and if you celebrate, have a beautiful Easter weekend.

Gina

Wednesday, March 23, 2005 8:16 AM CST

Hello everyone. I just wanted to leave a brief note letting you that Harrison is currently in the hospital at home in North Carolina; he had a fever on Sunday evening. He did have a wonderful birthday on Friday and the party was terrific. I will post a full update soon complete with the cutest pictures you have ever seen. Harrison seems to be feeling fine, his blood cultures are negative, urine cultures are negative, it is not pneumonia and he does not have the flu, however, he continues to have fevers once every 24 hours. We were to have left for NYC by now for “scan-week” so all of that has been temporarily postponed. The assumption, for now, is that something viral is at work and just needs to run its course. I hope this is indeed the case. So we are on 7T at Carolina’s Medical Center and I will keep you all posted when we are released and about our travel plans to NYC. As always, thank you for checking in on Harrison and please check again soon for that birthday update.

Gina

Tuesday, March 15, 2005 7:04 PM CST

A butterfly comes and stays on a leaf—
a leaf much warmed by the sun—
and shuts his wings.
In a minute he opens them, shuts them again,
half wheels round, and by and by—
just when he chooses and not before—floats away.
The flowers open, and remain open for hours, to the sun.
Hastelessness is the only word one can make up to describe it;
there is much rest, but no haste.
Each moment is so full of life
that it seems so long
and so sufficient in itself.
—Richard Jeffries



I love this poem; it brings such peace and congers images of spring and the changing of the seasons—a time of renewed life and strengthening of spirit. This trip home has definitely been a time of renewal and refreshment for our family. Harrison completed his last round of chemo without incident and we flew home that Friday afternoon (March 4th). Since then, Harrison has done beautifully. His counts remained stable, which meant no g-shots, and his energy levels, appetite, and overall health would never reveal that he had just finished his 16th round of chemo! In fact, things have been going so well that he was able to attend 2 days of school last week and would have continued this week except several children in his class have come down with viruses and fevers so he cannot attend until they are well. However, in the 2 days that he did manage to attend he had a wonderful time and everyone seemed glad to have him there. I have enjoyed being a kindergarten mom this week by volunteering at “Family Fun Night,” bringing snack to school, participating in the Camp Care Easter Egg Hunt and making cupcakes for Harrison’s birthday this coming Friday. As our family participated in “normal” school-aged activities this week I could not help feeling how terrific this life would be full-time without the trials of fighting cancer in-between. And then I remember that although I wish Harrison did not have cancer I would never want to change anything about him and I know that part of him is this experience. In turn, I feel honored to be his mom accompanying him on such an important journey. I will always remain grateful for all of my days with Harrison no matter if they are spent doing chemotherapy or decorating cupcakes!

This coming week should prove to be as exciting as last week. Thursday night is the spring school play, “Go Fish” where my beloved will be an electric eel. He has only one line but he does it with such style. And then Friday is the BIG 6; yes Harrison turns 6 years old!! This time of year, of course, always brings me back to a time when we were not sure how many birthdays we would be fortunate enough to have with Harrison—he has certainly surprised everyone and we are humbled by his strength and spirit. Two years ago Harrison had surgery on his 4th birthday and last year he was neutropenic (without white cells) in NYC and unable to see anyone. So, this year we are having a great celebration. We are taking Harrison and his friends to Dino-Star, which is a small private dinosaur museum where they will have a field trip like experience touching real fossils, eggs, and other “old” things (smile). In addition, all the kids will participate in a fossil dig keeping the bones they excavate. After which, they will make like carnivores and eat Happy Meals and a cake shaped like a T-Rex! I can’t wait to post those pictures next week. Harrison is truly excited for his party and secretly I can’t wait either.

Until those birthday pictures are posted, you will just have to enjoy the ones taken of him and Logan at the Camp Care Easter Egg-Hunt this past Saturday. Camp Care is a camp for children with cancer and they do a wonderful job putting-on both summer camps and school-year events. Harrison and Logan had a terrific time hunting for eggs, coloring, getting tattoos, and decorating cookies and the weather could not have been more perfect as you can see from the shorts and t-shirts.

After we get through all the festivities of this week Harrison, grandma and I will head back to NYC for “test week” where we will again evaluate Harrison's disease status. To look at him today it is hard to believe that he still has active disease. And as always we will continue to hope and pray that the scans will show stability or improvement. Harrison will have a CT scan on March 23rd, an MIBG on the 24th and bone marrows and an MRI on the 25th. After the scans we will make the next plan, but not until after traveling to grandma and grandpa’s house at the beach for the Easter weekend. I will, of course, keep you all posted on the test results as they come in.

Please keep Harrison and his friends in your thoughts and prayers; they have been working, our friends Jay and Michael are doing much better and Harrison looks the best I have seen him in months!

Until my next update be well and show your children you love them…

Gina



Wednesday, March 2, 2005 7:29 PM CST

As we grow, we laugh and cry at many of the same things, and fear many of the same things. At the end, we all leave the same way—by death. Yet no two threads—no two lives—in that vast tapestry of existence have ever been, or ever will be, the same.


Hello everyone; I just wanted to let everyone know that Harrison is doing just fine. We arrived safely in NYC, last Friday thanks to a wonderful Corporate Angel Flight and started chemo on Monday. Harrison is tolerating this round extraordinarily well with no vomiting or nausea thankfully, so far. In fact today he walked several blocks to his favorite “brick oven” pizza watering hole with two very good friends from clinic Michael and Carolyn. And Mom and I got to enjoy lunch with their mom’s my very good friends Sharon and Jen. So all in all it has been a good week for Harrison.

My heart is heavy though as we have many friends and their family’s who are having very difficult weeks. Our neuroblastoma family has lost several precious children since Valentines Day and 2 children this past week alone. It has been very devastating to everyone. In addition, we have some neuroblastoma warriors fighting very hard right now to win their battles, especially our friend Jay . Although Harrison has never been without disease he is in excellent condition, full of life, and enjoying himself even during his chemo weeks. I will continue to be grateful for each day, each hour, and each minute with my precious child. Please continue all those prayers for Harrison and his friends—the absolute bravest, smartest, and most terrific group of kids I have ever had the great joy and privilege to know and love.

Harrison, grandma, and I plan to fly home to NC on Friday after chemo. We will enjoy a two-week break, celebrate Harrison’s sixth birthday and then return to NYC the week of March 21st for “scan week.” Until then be well… and please pray for us all.

With hope and love,
Gina

Wednesday, February 23, 2005 2:59 PM CST

Finish every day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely, and with too high a spirit to be cumbered with your old nonsense. This day is all that is good and fair. It is too dear with its hopes and invitations, to waste a moment on yesterday.
—Ralph Waldo Emerson


Well, it has been some time since my last update. The men in my life have been keeping me more than busy. Let me start with the last time I updated—the day after Mike’s surgery. All went very well with the knee per say, however within a few days of being discharged from the hospital Mike began to feel very poorly; with all signs leading to another pulmonary embolism, UGH! So we spent the greater part of our days in the ER and multiple doctor’s offices doing an array of tests ranging from CT scans to blood draws to echocardiograms and still no known cause of his physical distress.

As rough as last week was on Mike it was great for Harrison, which suited me just fine because if both Mike and Harrison were having a tough time together I would be in a fix.
So, as I was making doc visits with Mike, Harrison was having a grand time at school for the week. It has been since October that Harrison attended school last and his counts were finally high enough to go—and his whole class seemed to be in good health. He had a terrific week that started with a Valentine’s party and ended with 2 birthday parties over the weekend. By the time Saturday arrived, we were on birthday number 2, a costume party where the girls dressed as princesses and the boys as superheroes. My guy went as none other than “FLASH.” They had such a great time and Harrison seemed to be really enjoying himself. It was also around Saturday that Mike finally started to feel better and still we were no closer to any medical answers but by now it did not really seem to matter.

This brings me to Saturday, early evening when we all went to dinner after the birthday party. Everyone was feeling good and having a nice time. Later that night, after his bath, Harrison spiked a random fever out of nowhere! It was 102.9 by the time we got to the hospital, around 10:00 pm so we were admitted, and within the hour the usual blood cultures were drawn, urine test run, Tylenol administered, chest x-ray ordered and completed, and a whole battery of IV antibiotics stream through his central line. All this is the usual course of action during a fever. My awesome sister-in-law, Sheila accompanied Harrison and I to the hospital and stayed well into the night to get us settled which was finally about 1:00 am. Thank you Sheila for all that you do for us! My family is amazing; this journey would be so hard without them. Speaking of amazing family, since Harrison was technically due in NYC for chemo Monday my Mom was already on her way to NYC on Saturday in anticipation of picking Harrison and I up on Sunday. So here we were admitted to our local North Carolina hospital with Mom on her way to MSKCC! Life with cancer is full of uncertainty right on down to the last minute travel plans.

As it turns out, Harrison had an upper respiratory infection and that was all, thank God. So after 36 hours the IV antibiotics came to a screeching halt, oral zithromax was started along with albuterol breathing treatments and by the 48-hour mark we were discharged home. Dr. McMahon (our home oncologist) is terrific, he diagnosed Harrison’s breathing problem, got him fixed up and we were on our way. Now, what to do about the chemo that was supposed to have started on Monday in NYC? After many emails with NYC it was decided that we would give Harrison this week to finish his z-pack and begin chemo this coming Monday (Feb. 28th) in NYC as planned for last week. So, this brings me to this moment—Harrison and I have a flight early Friday morning to head north. Mike is currently doing great; his is attending physical therapy 3 times a week, and has less pain on week 2 from surgery than he has had in the last year and a half. I think this “new knee” thing is really going to work out for him (smile)!! And as for Harrison, well he really never felt badly during this whole fever thing so after 5 days of antibiotics and breathing treatments he really feels like a million bucks and is driving me crazy [in a good way] being cooped-up in the house so Sheila took him to pick-up his best cousin at school (Logan) and then they are heading to their weekly gymnastics class (see new pictures).

I think this about covers the last 2 weeks of our lives. It is enough excitement for me for now. I am looking forward to a nice boring chemo week in NYC, seeing my NY friends whom I miss, and spending time with my Mom. Most likely Harrison and I will return home for a week or two after the chemo and then back to NYC for the next round of tests. It will be time to pick a new treatment for Harrison—we probably have gotten as much mileage as we are going to out of these last four rounds of the same combo of drugs—so time to switch again. To what, who knows! That is a whole other journal entry.

Until the next update from the BIG APPLE be well…

Love,
Gina


Wednesday, February 9, 2005 3:41 PM CST

Just a quick update to let everyone know that Mike did very well in his surgery on Monday and he will be discharged from the hospital tomorrow. Dr. Mason was very pleased with how things went and we should have a fully functioning knee with no pain in just a few short weeks. As for my other guy he, too, continues to do well. He is currently with Aunt Sheila and Logan at gymnastics class and then out to dinner at his favorite Japanese restaurant. We will both be glad to have Mike home tomorrow and spend some time as a family before Harrison and I head back to NYC for more chemo on the 21st. Thanks for stopping by to check-in on our family. I will keep you updated as life continues…until then…be well.

Feeling exceptionally blessed for the health of my family,
Gina

Sunday, February 6, 2005 6:43 PM CST

Hello everyone. Sorry it has been so long since my last update but things are fine. We arrived home safely a week ago Friday evening, after Harrison completed his 15th round of chemo and have been enjoying our time home. Harrison’s counts have recovered nicely and he seems to be feeling very well. We have been filling our days with schoolwork (I am working with him at home thanks to a great take-home packet of work from his teacher at Sloan-Kettering, Ms. Ann Marie) and playing with his friends in the neighborhood and, of course, his best friend and cousin Logan. Harrison is still enrolled at Davidson Day here in North Carolina but with lower counts from the chemo and many sick children at school that has not been an option at this time.
The current big news is that Mike is having knee replacement surgery bright and early tomorrow morning so we have been getting ready for that. As many of you know, Mike and my brother-in-law were in an accident a year and a half ago. Mike’s knee was severely damaged and knee replacement seems to be the best option. So the timing is good, Harrison does not need to be in NYC for another 2 weeks for chemo so we can spend some time at home taking care of Mike. Mom and Dad came in town this evening to help me out with Harrison for the next few days so I can spend time with Mike at the hospital.
I most likely will not update again for a week or so; I am guessing Mike and Harrison will be keeping me pretty busy for now. As long as both of my men stay safe and healthy I will be forever grateful to take care of them.
So, until the next update…be well.

Love,
Gina

Wednesday, January 26, 2005 7:09 PM CST

Hello everyone. Just wanted to let you all know that all is well here in NYC. Harrison is tolerating his chemo well and the last scan, the MIBG, also stated that Harrison's disease remains stable. So, on Friday we are off to NC for a few weeks off and will return towards the middle of February for another cycle of the same chemo. Since this update is so short I am including a little story with a great moral.

Gina

A carrot, an egg and a cup of coffee... You will never look at a cup of coffee the same way again.


A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose. Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil, without saying a word. In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.
Turning to her daughter, she asked, "Tell me? What do you see?"
"Carrots, eggs, and coffee," she replied. Her mother brought her closer and asked her to feel the carrots.
She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, "What does it mean, mother? "Her mother explained that each of these objects had faced the same adversity... boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile; its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.
"Which are you?" she asked her daughter.
"When adversity knocks on your door, how do you respond?
Are you a carrot, an egg or a coffee bean?"
Think of this: Which am I?
Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?
Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart? Or am I like the coffee bean?
The bean actually changes the hot water, the very circumstance that brings the pain.
When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity?
Are you a carrot, an egg or a coffee bean?

May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.

The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.

Saturday, January 22, 2005 9:19 AM CST

Some days, doing “the best we can” may still fall short of what we would like to be able to do, but life isn’t perfect—on any front—and doing what we can with what we have is the most we should expect of ourselves or anyone else.
Mr. Rogers


Well, “scan week” has come to a close and all is well. So far, the results that are in have determined that Harrison’s disease remains stable—thank God! The MRI of the spine shows the same abnormalities but NO new growth; these means that the 13 days of radiation that we did in December is holding the disease in his spine and epidural area at bay. The CT of his chest, abdomen, pelvis and neck are stable showing some decrease in the size of the upper left abdominal node we found in November. This is great news. The bone marrows are still showing some evidence of neuroblastoma but no more than usual and his urine markers are within normal range. We completed the MIBG scan at 5:30 yesterday so those results will not be available until Monday but I do not expect any surprises.

So, let me say a BIG “PHEW” (sigh of relief) and a BIG THANK YOU to all of you who were praying and sending love and light to Harrison. I used to hope and pray for Harrison to be cancer free and I still do but more often than not I find myself just praying that things remain stable and treatable. In my heart of hearts I would still be grateful if Harrison remains stable and treatable for the rest of our lives and would gladly attend clinic in NYC for years to come.

Harrison has been feeling well and full of energy this week. In between scan days we have been filling our time with legos and transformers and on Wednesday spent the evening with our friends Michael, Anthony, and Sharon. Michael is treated with Harrison in clinic and Sharon is one of my dearest friends. Michael is one of our heroes, fighting neuroblastoma for over 6 years—you go Michael. Last night we picked up my girlfriend Tina and Harrison’s play pal Katie (Tina’s little dog) to spend the weekend at the apartment with us. So we are doing our best to balance a stressful week with some fun, relaxing times and good friends.

So what is next you ask? Well, first a really big snowstorm! We are supposed to get up to a foot of snow in the next 24 hours and Harrison is really excited. If given the chance we will attempt a “snow angel” and a “snowman.” My little southerner is thrilled with the prospect of snow-play tomorrow. And as for the “cancer thing” the plan is to start another cycle of chemotherapy on Monday. It will be the same as the last 2 cycles he has had—a five-day course of Irinotecan and Temozolomide. Harrison has tolerated these drugs well in the past so I do not anticipate any complications. And after that, I don’t know yet.

Thank you for checking in on us. I have received so many thoughtful emails and phone calls this week and I am so appreciative of the love and support. I will update again if anything changes so until then…be well.
One very grateful and blessed Mom,
Gina

Wednesday, January 12, 2005 12:18 AM CST

The first step towards getting somewhere is to decide that you are not going to stay where you are.


Hello all; just a quick note to let you all know that we are currently back in NC and doing well. We had a great New Year with the whole family in NYC and Harrison and I flew back to Charlotte last Wednesday evening. We have really enjoyed the week at home and only made two trips to Dr. McMahon's office to have Harrison's counts checked. He is recovering nicely from the chemo he had Christmas week.

We have been spending time with friends and family and genernally just have enjoyed being home. Harrison and I leave Monday (the 17th) for NYC for "test week" which begins on Tuesday. He will have the full work-up; bone marrow biopsies, MRI of the spine, CT of the chest, abdomen, pelvis and neck, and a MIGB scan. After which, we will determine the status of his disease, the effectivness of 2 rounds of chemo and the 13 days of radiation. Once the results are in and his docs meet a new treatment plan will be formulated.

Please pray for Harrison; that these tests reveal stable disease or improvemnt and that nothing "new" happens. I will keep you all posted as test week progresses. Until then have a great week and don't forget to hug and kiss your little ones everyday and never take them for granted!

Love,
Gina

Sunday, January 2, 2005 6:04 PM CST

A NEW YEAR, 2005; may it be filled with hope for everyone…



Hello everyone and Happy New Year. We hope you all had a wonderful holiday season. Well, I think the last time I updated we were finishing-up radiation and heading home for Christmas Eve. We made it safely home on the evening of the 23rd, thankfully. We saw so many people stranded in the airport; we were so grateful to have made is home without incident. When we landed we headed straight to Aunt Sheila and Uncle Brady’s house where a wonderful meal and a lot of love were waiting for us—it was a great day! The radiation seemed to have done its job and Harrison has been pain free and steroid free since the week before Christmas (YEAH!!!). We had a terrific 3 days at home and Santa was very generous to everyone (see new pictures). Harrison had a great time with his cousin Logan. We had to return to NYC on Monday Dec. 27th to begin our next round of Irinotecan/Temodor and Harrison was in high spirits because our whole family was traveling to NYC to see us on the evening of the 27th. Yes, his 2 aunts, 2 uncles, 2 cousins, and his Daddy all traveled from North Carolina to be with us for New Years.

Harrison was just so excited to show everyone his clinic and his favorite things in the city; needless to say we have had an action packed 5 days. Wednesday started with the whole gang heading to clinic to see the fabulous playroom and new facility that opened last March. Harrison was quite the tour-guide and introduced everyone to his nurses and doctors. The next stop was Harrison favorite NYC restaurant, Petaluma’s, on 73rd and 1st avenues. Then the real tour began with a trip to Rockefeller Center to see the tree, Times Square to the 3-story Toys ‘R’ Us, and then the tour ended with a stop at Dylan’s candy shop on 60th and 3rd avenues. Now that is what I call a whirlwind tour Harrison style! And that was just day 1! On Thursday, Harrison had his last day of chemo and was feeling pretty tired so we spent a clam day playing back at the apartment and then out for a wonderful dinner of Portuguese food. On New Year’s Eve we spent evening at a beautiful restaurant on the water, on the Jersey side of the Hudson with the entire NYC skyline as our view it was magnificent. Later that night, back at the apartment, the kids stayed awake until midnight, watched the ball drop in Times Square (more interested in seeing if they could catch a glimpse of the Toys ‘R’ Us on TV), and viewed the spectacular fire works display in the New York Harbor. Our apartment is on the water so we had a wonderful view from our living room on the 37th floor. It was truly a magical New Years Eve and just knowing that Harrison has beat cancer for yet another year made it even more amazing.

On New Years day I cooked up brunch and then we took the kids to the Intrepid Battleship that is anchored in the Hudson on the West side of the city. Above is a picture of Harrison (left), Emma and Logan on the deck of the Intrepid. They had a terrific day marveling at all the planes, helicopters, and tanks—Daddy, uncle Brady, and Jason didn’t have a bad time either (smile)! I picked up my girlfriend Tina, who lives on the upper west side and when we arrived back at the apartment Mom and Dad had a delicious dinner prepared; a great time was had by all. We were sad to see everyone leave this morning but we hope to be only a few days behind them heading back to North Carolina.

All in all the holiday season was everything we could have hoped for. Not only did we enjoy the festivities and all of the trappings that come with Christmas and New Years but we were also blessed again with knowing what it means to be thankful for a year past and the beginnings of a new one with our entire family. We have had so many friends who have endured the holidays without their children and who will move into 2005, a new year without their little ones. Harrison is the center of our family and he means the world to us all. We are hopeful that 2005 will bring a year of courage, strength, health, and happy times for our family and especially for our precious children, Harrison, Logan, and Emma.

Our family wishes you and yours a very Happy New Year and may you all be as blessed as we feel.

Love,
Gina

Tuesday, December 14, 2004 2:44 PM CST

Wishing you a joyful Holiday Season and a New Year of peace, health and happiness…


Hello everyone and Happy Holidays from our family to yours; it is hard to believe that we are beginning the holiday season already. Despite the year of constant treatment and fighting cancer, it has flown by and the New Year is almost upon us. I was looking back at the journal entries that I was writing this time last year and was overwhelmed by both my gratitude and sadness. During the holidays last year, we lost both Harrison’s dear friend and playmate, Jacob Aaron Courtney and Harrison’s grandfather William Nichols. At the time, we were celebrating Harrison’s continued fight with neuroblastoma, when every new day is a win. However, we were also so grief stricken by the loss of those we loved so very much. And as this New Year awaits us so does the continued promise of hope, a renewed faith in miracles, and an unwavering gratitude that our family remains together to welcome the spirit of Christmas and the New Year.

We are still currently in NYC as Harrison is on day 6 of 13 days of radiation. We finished chemo on Saturday, Dec. 4th and all went well. Yesterday, however, we learned that Harrison has his second case of pneumonia in 6 weeks UGH! Nevertheless, in true Harrison style, he presented with a fever yesterday morning and after one course of antibiotics is feeling much better today and the good news is that the team did not admit us to the hospital (YEAH!!!).

After his last day of radiation on Dec. 23rd we will fly home for 3 days, just in time for Santa to arrive (PHEW)! And as you can see from the picture Harrison met up with Santa last week to make sure he was aware of the last minute add-ons to the already huge Christmas wish list. After receiving what I am sure will be a ridiculous amount of loot from Santa, we will return to NYC on Dec. 27th to begin Harrison’s next round of chemotherapy. After that, it is on to “scan week” where the team will assess Harrison’s disease status in order to formulate the next treatment plan. All in all Harrison has had a tough winter and we are all looking forward to the NEW YEAR, again hopeful that 2005 will be a year of good health and a good life for Harrison.

This will most likely be my last update until Christmas. Time is flying by and between radiation, a quick trip home and more chemo life will be rather busy. Our family does truly hope that you all have a wonderful holiday season and that whatever your circumstances that you are able to find some peace, comfort, and joy during this beautiful time of year. Be well…
Love,
Gina


Tuesday, November 30, 2004 6:48 PM CST

This picture was taken over the weekend of Harrison (left) and his cousin Logan (right). He had some others taken with Emma too but they are not available on disc to put on the site.


Well, it has been quite a while since I have last written and much has happened since my last update. On Nov. 6th when I last posted we were in NYC doing some tests to find the source of the pain Harrison was having and preparing for our next cycle of antibodies. We never did have our next cycle of 3F8’s; instead we have spent the last three weeks investigating the source of Harrison’s pain, which became increasingly worse as the weeks passed. By the third week in November Harrison came down with pneumonia, which landed us in the hospital for 4 days.

Harrison underwent many scans and tests revealing to us a new abdominal node that may or may not be neuroblastoma. The scans were inconclusive regarding this new node. It has been determined that the node is not the source of the pain. However, there is an old piece of tissue near Harrison’s spine that has been stable for almost 2 years now that may be pressing on a nerve causing him the discomfort on the left side. They decided to put Harrison on a steroid and a neuropathy drug the Friday before Thanksgiving that helped a great deal in managing his pain. Additional bone marrow tests showed Harrison’s marrow to have no evidence of neuroblastoma, which was a big win for us! His urine markers are also at an all time low, another big win for us! The Tuesday before Thanksgiving we finished our last scan, an MRI of the spine and we flew home for the Holiday that evening with the intention of returning on the following Monday in preparation for Harrison to have surgery tomorrow to remove the suspected culprit of the pain, the old piece of paraspinal tissue. Well, that plan has since changed and the surgery has been, for the time being, postponed and instead we began a round of chemotherapy today (IV irinotecan and oral temozolomide). The surgery would have been a difficult complicated one with regards to the paraspinal piece and the abdominal node at this time is very small and not for certain neruoblastoma. So, all the doctors including his oncologists, the surgeon, the neurosurgeon, the neurologists, the radiation oncologist, etc.. met and the general consensus was that the surgery was a big ordeal to put him through without guaranteed results of eliminating the pain so they would like to try another avenue first; hence the chemo, hopefully to be followed with radiation to the paraspinal tissue. Also, with this new plan to treat him systemically we are sure to treat his marrow and any other disease that may exist.

So Harrison endured day one of his 13th round of chemotherapy today and took it like a champ. We are weaning down off the steroids but Harrison is starting to have breakthrough pain; thankfully it has been manageable with some oral pain meds. The really hard part of all of this is that they are still uncertain what the pain is from. It is everyone’s best educated guess that he is experiencing nerve pain, not from new disease but from an old existing piece of tissue that may or may not be neuroblastoma or scar tissue. I am hoping that this current treatment plan is the answer we need to relieve Harrison of his pain and contain any disease that we may still be dealing with.

Other than brief periods of side pain, a bout with pneumonia, 3 weeks of constant and relentless testing Harrison is doing very well. Thanks to steroids, and the hugely increased appetite Harrison has gained 5 lbs this month and looks very beefy. His energy level is starting to pick up and he seems to be feeling pretty good. He really enjoyed Thanksgiving with his Dad and of course his cousins Emma and Logan. He is so looking forward to Christmas and has been busy making his list for Santa. It is my hope that we can finish this chemo and get radiation finished in time to make it home for Christmas.

Now that things have settled down a bit for us I will update the site with greater frequency. It has been a very trying couple of weeks but I am feeling much better now that a plan is in place and hopefully we are on our way to helping Harrison to not only feel better but to continue to win his battle with neuroblastoma.

Hoping you all had a Thanksgiving filled with blessings to be thankful for; I know we did.

Love,
Gina








Saturday, November 6, 2004 11:00 AM CST

Hello everyone: I just wanted to let you all know that Harrison is HAMA negative so we are currently in NYC getting ready to begin cycle 6 of 3f8 antibodies.

Harrison did get out of the hospital in NC in time for Halloween. Although he was feeling tired, we did manage to “trick or treat” for a while and enjoy the evening. We never did get to the bottom of the “mystery pain” so, on Tuesday, Harrison and I flew to NYC in order for Harrison to undergo a few additional scans to see what was happening. On Thursday, he had an MIBG scan but as of Friday, late afternoon the results were still not available. He has not complained of any pain since last Monday evening so we are very hopeful it was either some constipation/gas or something viral.

In the meantime his HAMA test showed him to be HAMA negative so we will remain in NYC for the next 2 weeks for antibody treatments. We should have test results Monday so I will keep you all posted. Our prayers are that they find nothing new or exciting and that we can attribute to whole fever/pain episode to something viral.

I hope everyone had a safe and fun Halloween and I will update again soon.

Love,
Gina

Saturday, October 30, 2004 6:37 PM CDT

May today there be peace within. May you trust your highest power that you are exactly where you are meant to be. May you not forget the infinite
possibilities that are born of faith. May you use those gifts that you
have received, and pass on the love that has been given to you. May you
be content knowing you are a child of God. Let this presence settle
into our bones, and allow your soul the freedom to sing, dance, praise and
love. It is there for each and every one of you.
—St. Theresa's Prayer


Thanks Lucy, for sending this beautiful prayer to me this week.

Well, it has been a while since my last update and we have been busy enjoying life at home for a few weeks. The rest of Harrison’s treatment went well and we arrived home on Oct. 16th. Since then, Harrison has been enjoying school and attending many field trips with his kindergarten class including a stop at the Pumpkin Patch and to the local Civic Center for Fire Safety lessons from a local fire department. (see new pictures)

All has been going well and I have been really enjoying being a kindergarten Mom. It has been such a pleasure to participate in Harrison’s school activities watching him learn and grow.

Earlier in the week Harrison was complaining of pains in his side and back. Of course, any complaint from a kid with neuroblastoma sends a parent into complete panic. And knowing that Harrison NEVER complains had me additionally concerned. So on Wednesday we headed to Dr. McMahon’s office for the HAMA labs and to have him check out this mystery pain that I was praying was just gas. After a complete exam our doc could find nothing obvious wrong with Harrison and since he was acting just fine with just mention of the pain every few hours not constantly Dr. McMahon sent us for a chest x-ray, which reveal a perfectly normal chest—PHEW no new obvious tumor growth. Well, the problem was that this was the good news but it still did not explain the pain. So, the next morning we headed for a chest CT just to be on the safe side. The CT scan of course is a much more sensitive scan that, unlike a chest x-ray, would show smaller growth or any irregularity. The CT scan revealed nothing new; Harrison does have some tissue near the spinal canal that we knew of and the scan did not seem to indicate any new growth—another PHEW!!! But the mystery of the pain continued.

Well, by Friday morning (around 5:30 am) Harrison woke with a fever; nothing raging but enough of one to warrant a trip to the hospital. But by the time we arrived at the door of the hospital the fever did not exists. Dr. McMahon met us around 8:00 am and we decided that cultures of his central line and 48 hours of IV antibiotics were good choices just to play it safe. I am happy to report that the fever never reared its ugly head again and once the antibiotics started the pain in his side too subsided and has not returned. (now is when you go knock on something wood for me!). So, the theory is that due to the elevate white count, the strange aches and pains, and the fever, that we just contracted some typical kindergarten funk, something bacterial or viral. However, when you have a central line the typical kindergarten funk lands you inpatient. Harrison did miss the huge Halloween party at school but the hospital had “trick or treat” on Friday and his cousin Logan came Friday night and brought him all the goodies from his class party. So thank you to Aunt Sheila, Logan, and his whole class for making this last 36 hours better for Harrison. He is feeling much better and was unhooked for most of the day from his IV pole terrorizing the pediatric floor with his two cousins and his best friends Emma and Logan. He is currently sitting on his bed playing Legos with Mike and feeling fine.

The plan is to get sprung in the morning if the cultures still look good and the fever stays gone. Our goal is to be home for the evening “trick or treat” festivities in our neighborhood.

So, other than this small detour which turned out to be good on the scale of hospital stays things have been going well at home. We are grateful that as of this minute the pain and the fever seem to be nothing more than a common bug. We should hear from NYC about the HAMA on Wednesday and if he stays on schedule we will be heading to NYC for Nov. 8th.

I guess that is all for now and I will post after we have our NYC plan. Thanks for checking-in and I hope everyone enjoys Halloween.

Love,
Gina

Friday, October 8, 2004 4:56 PM CDT

After ten years, they still fit.
—Mike


This is what Mike said to me on the phone last night about the shoes he wore at our wedding, ten years ago today. I think it sounds like a pretty good metaphor for Mike and I; still a perfect fit after ten years—Happy Anniversary my love.

It has been a while since my last update—sorry we were busy acting normal enjoying the kindergarten and our time home. Harrison has been doing great with school and really enjoys going. He has made so many new friends that he continually talks about. I am so grateful that he is having such a terrific experience and Mike and I are just thrilled with our choice of schools. Thank you Davidson Day for making Harrison and I feel so comfortable.

Harrison’s blood tests last week turned out to be HAMA negative so on Sunday Harrison, Mom, and I packed up and left for NYC where on Monday he began cycle 5 of 3F8 antibody treatments. Today is day 4 of 10 and all is going pretty well. He has had a significant amount of pain and hives so far but everything has been well managed by pain meds and his terrific team of nurses. Thankfully, he has not experienced any vomiting this week and seems to be feeling well most mornings before the treatment begins.

Currently as I type this at his bedside he is in school with Ms. Anne Marie keeping up with his lessons. So Ms. Melissa and Ms Julie if you are reading this Harrison is doing his lessons, reading, and writing. He talks about you all and his friends at school everyday and tells me at night when he thinks of things that make him happy school and his Daddy are at the top of his list (smile).

This weekend we have a family wedding to attend here in the New York area so Mike, my sister, and my Dad are flying in for the weekend and my best friend Tina is staying the night with Harrison. He is so thrilled for Tina to come and stay—I know he will be in great hands and Mike and I are looking forward to enjoying a night out especially since it is our anniversary weekend.

Next week we will continue with treatment and we will head home on Saturday. Dr. Kushner has decided to give Harrison the month off from bone marrow biopsies so we will enjoy another three weeks home hopefully before coming back for another cycle of 3F8’s. This means Halloween will be spent at home with all his friends and his cousins and he is thrilled. Of course, we already have our costume thanks to the convenience of ordering online (smile). Harrison is going to be the Red Dinothunder Triassic Power Ranger. I will be sure to post pictures.

Thank you all for checking in and I will update again after we arrive back home in NC next weekend.

I hope you all are having a wonderful start of fall and enjoying the wonderful cool weather.

Love,
Gina

Friday, September 17, 2004 8:29 AM CDT

The source of my reactions is within me.
—Osho



We made it home safely on Monday evening, after an early bone marrow biopsy (results not available yet), thanks to another terrific corporate angel flight. And bright and early Tuesday morning Harrison began his first day of the Kindergarten at the Davidson Day School. The last week of 3F8’s was better than the first but the days still came with hives and pain—all much better managed on the second week, thankfully.

On Tuesday morning, I surprised myself with a rather clam but excited demeanor regarding Harrison’s first day at school and his first full day away from me in years that did not involve family care. He, too, was excited and proud and looking so handsome in his school embroidered polo shirt and kaki shorts and strutted into his classroom without hesitation. And I thought to myself…

“it was here, the day I had always been hopeful about but was ultimately unsure would ever come to pass. After all, so many beautiful children that Harrison has fought bravely along side of will never have the opportunity to attend the Kindergarten. To say we are blessed is severely lacking in magnitude. As he entered the room I desperately wanted to follow, taking care of his every need as I have for the last 5 years but instinctively I knew I should not. This was his time, his day. The warmly lit classroom only added to his radiance and the self-assured confidence that came with being a high school senior—high man on the totem pole—not a kindergartener who was embarking on his first day of real independence. But why shouldn’t he be confident, assured, and ready? After all he has taken on bigger things than this, hasn’t he? Yes, at the tender age of five he has already taken on fate, destiny, and given new meaning to the word faith. Kindergarten would be a breeze.”

And so it was the first day until rest time when he became sad and missed me. I did pick him up early that day and the few days following have been a bit of a struggle with separating from me but all in all things are going well. His teachers, Ms. Melissa and Ms. Julie are terrific and I could not be more please with how the classroom is run and managed. I think Harrison will flourish and this is, eventually, going to be a wonderful experience. Harrison is feeling great and looks terrific as you can see from the new school photos.

I have been staying busy during the day doing the things one must do after being gone for 3½ weeks. Next week once the “to do list” is out of the way I am hoping to relax a bit and take some time to see friends for lunch or do something as carefree as shopping or a massage. Harrison will also have labs done next week; we will be sending blood to MSKCC on Thursday for the HAMA test. Please say a little prayer that his HAMA is negative and we can continue the antibody treatments that seem to be so helpful in ridding Harrison of his remaining disease.

Mike is also doing well, having just passed the anniversary of that awful truck/boat accident last year. He is working long hours and staying busy during the weeks he is without us.

Well, I guess that is all for now. I will post a quick update when the bone marrow tests are back—should be any day now.

Until my next update, be well…

With gratitude and love,
Gina

3:30 pm today
add on: Just got word this afternoon, bone marrows are still positive for disease. However, we are no worse for the wear so we will just keep on fighting! Have a great weekend.

Tuesday, September 7, 2004 7:16 PM CDT

the secret of heaven: that each effects the other and the other effects the next and the world is full of stories, but the stories are all one.
—Mitch Albom



The above quote comes from a really interesting book I just read this weekend. It is called The Five People You Meet in Heaven. It is about how everyone’s lives are interconnected, even strangers and the how events of our lives are neither meaningless nor random. And when you get to heaven you meet five people who have in some way effected or been effected by your life showing you that all events have meaning. It made me really consider all the people we have met and those whom we have not who have been touched in some way by Harrison and the events of his life and our journey. So often people we do not know sign into his guest book with kind notes or sometimes people approach me in clinic, introduce themselves and tell me that they have heard about Harrison’s life through someone else. It is truly an amazing phenomenon to think about how people you have never met are in some way altered by the events of your life. And speaking of events in our lives…

Last week was a difficult one, hence my delay in this update. I usually shy away from detailing our experiences from a medical viewpoint because it is often sad and overwhelming to both read and write. However, I would like to share with you just what Harrison’s week was like. I think he deserves for people to really know and understand what he goes through time and time again in his fight to survive.

Monday was our toughest day, not unusual for 3F8 treatment. But when the pain started so did the hives so Harrison received a fair amount of medications very quickly. This caused his blood pressure and his oxygen saturations to rapidly decline resulting in an increased heart rate and a catatonic like state. He was non-responsive even with his chest being massaged and 15 liters of oxygen on his face. The end result was a dose of a drug called narcan, which works to quickly withdraw the effects of the narcotics necessary to combat the pain caused by antibodies. It was a little scary for a few moments although his nurses had things under control. Tuesday was better, thankfully but then on Wednesday it was determined that Harrison had developed an allergy to the GM-CSF, which during cycle 4 is given as an IV drug verses as a shot in the leg. This, in turned, caused a severe case of hives and vomiting before the antibodies even began. By Thursday, we had developed a system to control all the side effects of both the GM and the antibodies so Friday was by far his best day.

Friday after treatment, we headed to the airport to get Mike and we did manage to have an excellent weekend. The weather here was beautiful and Harrison spent most of his time in the pool. And now week 2 begins. Hopefully the system we developed last week will still be effective this week in controlling the side effects that come with both the antibodies and the GM.

After this week Harrison will have his bone marrow tested and then we will head home to NC where the Kindergarten awaits him.

We are hoping after the great MIBG results that his marrow too will show the results of the improving disease status. I will update after we head back to NC and when the marrow results are available. Thank you for checking in with us and keep those prayers coming. Harrison is truly doing so well and we are grateful.

Until my next update be well…

Love,
Gina

Friday, August 27, 2004 2:50 PM CDT

Harrison is a Bushwhacker; he’s just blazing his own trail…
—nurse Connie


Subtle, slight, and stable are all the good S words that a cancer parent can appreciate and be grateful for when it comes to their child’s scans. However, when your MIBG scan reads SIGNIFICANT improvement, well then that is really something to talk, no shout about!!! Yes, we have it in black and white the status of Harrison’s disease has significantly improved and to say we are thrilled is a gross understatement. This has been the first time in months and months that we have received such hopeful news. It has been an emotionally trying week but worth all the stress. Oh, and did I mention that Harrison is HAMA negative, again, much to everyone’s surprise so we are resuming 3F8 antibody treatments here in NYC on Monday! Harrison indeed has his own plans for how this cancer thing is going to play out but we are moving in a positive forward direction and we are blessed. All in all, it has been an exciting week and Harrison is doing great. So, today’s plan is to start antibodies Monday for 2 weeks and then during the 3 weeks off we will return to NC where Harrison will attended the transitional kindergarten and start cycle 2 of accutane.

Our family is really feeling rejuvenated by this excellent news and we have been given a whole new perspective of hope and faith that one day we may hear the words “no evidence of disease.”

We want to thank you all for hanging in there with us and for all the prayers. They are being answered!

I will update again next week so until then be well and celebrate our good news!

Love,
Gina

Tuesday, August 17, 2004 12:48 AM CDT

Mommy, you’re my heart
—Harrison


When I woke up this morning Harrison rolled over and said these very words to me. What a way to start the day!! Sorry for the delay in the update but there really has not been much to report, thankfully! Harrison is doing well with the accutane; he is experiencing some peeling lips and dry skin but otherwise so far so good. He is also, as usual, enjoying his time at home with his friends and cousins having daily play dates and activities. So all in all, and give or take a few cancer cells things are good.

We are heading back to NYC on Sunday and the big test work-up begins bright and early on Monday morning at 8:20 am with a CT of his chest/abdomen/pelvis and neck. On Tuesday it’s the MIBG injection, and Wed is the MIBG scan. So far, no word on the MRI of head and orbits but I am sure it is scheduled by now.

I will update again once the test results start to roll in. I am realistic in my expectations regarding the scans and by no means do I expect to hear the words NED. However, my prayers are that there has been no disease progression and that the accutane has kept the remaining neuroblastoma cells at bay during this last two weeks.

And lastly, best of luck to everyone getting their kids off to school, as the new-year commences. If all goes well Harrison, too, will be attending a transitional Kindergarten class this fall at The Davidson Day School here in North Carolina, as treatment permits. It is amazing how we take for granted the ability for our children to attend something as simple as Kindergarten. But nothing is simple when your 5 year old has cancer. So here’s to all the cancer kids that are getting to attend school this year—Michael R, Carolyn C, Bryce, Joshua Y, Joshua F, Crawford, Christi, Morgan, and hopefully many many more and to all the school-aged angels who will be protecting them, guiding them, and loving them from heaven—Simon, Jordan, Jake, Michael D, Robyn, Nick, Alex, and unfortunately too many more.

Thanks for checking in and I will update, as there is news to share.

Hoping to be a normal Kindergarten class Mom this year,
Gina

Tuesday, August 10, 2004 2:00 PM CDT

Just a quick note you let you know that Harrison's bone marrow is still showing microscopic evidence of disease. It is not what we hoped for but it is what we expected. We are no worse off than we were before it just means that the quest to rid Harrison of disease continues. But not to worry there are always the tests in the next few weeks, perhaps we will get lucky then! We are off to NC in a few hours and all is well. So far, Harrison is doing fine with the accutane and feeling great. I will update again soon.
love,
Gina



Sunday, August 8, 2004

The quest for certainty blocks the quest for meaning.
—Erich Fromm



Life with cancer sure does keep you on your toes and living present moment. The plan has changed yet again so let me update you all…

After long a discussion including many questions and answers, we have decided to start Harrison on oral Isotretinoin treatments (accutane) for 2 weeks while trying to wait for the HAMA to disappear. The goal is for Harrison to return to 3F8 antibody treatments on his current protocol. If Harrison deviates from the protocol by taking anything other than accutane he will have to come off of this current phase II study (something we are trying to avoid). Often children will loose their HAMA after a period of time so, for now, it will be a matter of keeping Harrison safe and stable while trying to get back to antibodies (the treatment that his doctors think is our best shot at clearing his marrow). He started accutane this past Sunday, 2 pills in the am and 2 pills in the pm coupled with 1 beta-glucan pill (immune system enhancer) daily. Harrison is a good pill taker so we should do fine. This is also a drug that we can do at home so we are off Tuesday evening, bound for North Carolina. It does require weekly lab draws to monitor electrolytes but that is certainly something Dr. McMahon’s office can handle while we are home.

Many of you may be familiar with accutane, as it is the same drug that many people take for acne problems. However, taken in extremely high almost lethal doses it is also a proven anti-neuroblastoma drug. It is used mostly in the NED setting, meaning as a maintenance drug for children with no disease. As you can imagine, I am slightly nervous about opting for it at this time for Harrison, as we are still positive for nb. The side effects are much like those for people taking the drug for skin healing but intensified due to the extremely high dosing level. We are to expect dry pealing facial skin and lips; possible headaches and leg pain; sensitivity to sunlight; and potentially strong emotional outbursts. All of these are the mildest of the side effects. They are all also manageable. Harrison usually tolerates most treatments well and has a high threshold for discomfort. I think our biggest challenge will be greasing him up daily with thick creamy lotions to keep his skin and lips moist. But, no doubt, we will manage.

I hope and pray that we have made the right decision and that the accutane will be enough in the next 2 weeks to hold Harrison steady, preventing any new disease from occurring. In the 2 years that we have been in treatment, Harrison has always made progress in the right direction. We have always moved forward ridding him of a little disease at a time and thank God; we have never taken any steps backwards. I am praying with all I have inside that this latest decision allows us the good fortune to continue to move in that forward healing direction. His doctors are very confident that due to the biological make-up and the slow-growing nature of his particular disease that he will absolutely be safe for the next 2 weeks—please let them be right.

After our 2 weeks on accutane is over, the week of August 23rd, we will return to NYC for the full work-up including all the tests I mentioned on my previous journal entry as well as a check to see if his HAMA is disappearing. After that, who knows! We are just taking it one day at a time.

I will keep you all posted and try and update on how he does with the accutane treatments as well as the scan schedule as it comes in. And, of course, we are still waiting on the bone marrow reports from last Tuesday’s biopsies. I will post as soon as they are in.

Thank you all for the thoughtful notes in the guest book and the prayers for Harrison’s health and my strength. You really have no idea how warm and comforting it is to read your words of encouragement and hope as this journey continues to surprise us and surpass our wildest dreams in so many ways.

Before I say farewell, I must share with you 2 pieces of news. Both miracles in their own right but one full of hope and joy and the other sadness. The great news is that our dear friend Michael R, who is treated with Harrison at MSKCC has been participating in a phase I trial at the Children’s Hospital of Philadelphia for relapsed disease. And after one cycle of this experimental therapy his disease has had a total response—the spinal tumors are GONE GONE GONE!!! His mother Sharon is one of my dearest and closest friends here in NYC and Harrison adores Michael and is little brother Anthony. We are just THRILLED for their whole family—WAY TO GO MICHAEL!!!
And for the sadder news, our neuroblastoma family has lost yet another of their precious children this week. Simon, a beautiful 6 year-old was also in treatment last year with Harrison. They participated in the phase I trial of 3F8’s and beta-glucan together. Simon passed peacefully with his parents tenderly at his side. Fly Simon fly to a brighter safer place. My emotions are running high during this bittersweet time.

Until the next update…be well.

Love,
Gina

Thursday, August 5, 2004 9:21 AM CDT

The mind of the truly illuminated is calm because the peace of God within all things is known, even within the appearance of misery and disease.
—author unknown




Well, I have a quick update for you all: As it turns out, Harrison is HAMA positive. This was a major shock to us all as he had severe pain and hives everyday of his last cycle of antibodies. These symptoms are usually indicative of a negative HAMA but as we well know Harrison usually likes to play things a little differently than most.
This means that he is no longer eligible for the 3F8 antibody treatments.

I have tried to move through my feelings of disappointment and frustration and adopt the attitude that “it is what it is” I cannot change it but I must work with it so…time to find a new therapy for Harrison.

I guess after 12 cycles of chemo involving 7 different drugs, 3 surgeries, 2 cycles of 3F8/beta-glucan antibodies, 6 cycles of Arsenic Trioxide, and 2 cycles of 3F8/Gm-CSF, Harrison has truly decided that he is going to try everything in the Sloan-Kettering neuroblastoma arsenal before allowing himself to be declared NED (no evidence of disease).

So, am I thrilled about switching gears again? NO, but am I on board to give it all we’ve got? YOU BET YA!!!

Based on these latest developments the most recent recommendation from Dr. Kushner and the team is to do a full testing work-up. This would include at CT of chest, abdomen, pelvis, and neck; MIBG scan; and MRI of the head and orbits. In addition to all of this, we are waiting on the bone marrow results from Tuesday. I must confess, this turn of events would be much easier to swallow if we had clean bone marrow reports.

So now I wait to hear the testing schedule and based on those results we will formulate a new plan.

Please keep Harrison in your thoughts and prayers as we move through this next round of tests and say a little prayer that his doctors and I are able to make the best decisions for Harrison in treating this relentless disease.

Thanks for checking in and I’ll keep you posted on the test schedule and the results as they come in.

Love,
Gina

Monday, August 2, 2004 6:41 PM CDT

Happiness comes through doors you didn’t even know you left open


Hello everyone: Sorry is has been so long since the last update but time flies when you are home having fun. We have just spent 2 weeks at home in NC enjoying the warm weather, our family, and our friends. Harrison had a ball with his cousins and learned to swim independently. That is a really big deal for a 5 year-old who spent his first summer since he was 2 in the water. So far, Harrison has had a great summer and my fingers are crossed that it stays that way.

We have arrived safely back in NYC as of 8:30 this morning thanks to another flawless Corporate Angel Flight. Harrison had his HAMA test today to see if we are eligible to continue 3F8 antibody treatments and tomorrow he will have his bone marrow tested. We are praying that they do NOT find any neuroblastoma cells and that these treatments are doing the trick. Everyone in clinic seems please at how well Harrison looks and feels and that is very reassuring to me. After tomorrow, we will have the rest of the week off to enjoy NYC and the lovely pool in our building.

Well, I guess that is all for now—I will update again to let you all know if we are starting 3F8 treatments on Monday, August 9th. Until then have a great week and thanks for checking in on us.

Love,
Gina

Friday, July 9, 2004 9:33 PM CDT

In these difficult times, you must not lose hope. Never lose faith in the truth. In the end, everything will be all right.
—His Holiness The Dalai Lama


Happy weekend everyone: We hope you all had a great 4th of July weekend and week. We had a great time over the 4th weekend. A good friend of mine, here in New Jersey, chartered a yacht for the weekend and was kind enough to invite our family out to watch the fireworks anchored off the Statue of Liberty. What a show we were privileged to see—it was just spectacular! It was a great way to go into what has turned out to be a very tough week all around.

First, let me share our test results; as it turns out everything is about the same as far as Harrison’s disease status. That is both the great and not so great news. Of course, we would like to someday see Harrison clear of all marrow disease but in the world of neuroblastoma “stable,” “non-progressive,” and “no interval changes” are pretty good things to hear from your child’s oncologist. Harrison’s MIBG scan is identical to the one we did in April; his bone marrow continues to be mostly negative with a small foci of gangleoneuroma cells detected with an advanced staining process—in English this means that there is still a scant amount of matured treated disease found in his marrow; and his urine markers continue to be within normal range. If you don’t hear the words “no evidence of disease” Harrison’s report was the next best thing. His docs, although hoping to get him clean, are happy with his stability and are thrilled with how he looks and feels. So, we are all doing our best to leave disappointment behind and celebrate our good fortune. After all, Harrison is not disappointed and that’s good enough for us.

This week, in addition to receiving our test results has been a difficult one. Harrison had had a tough time with the antibody treatments. He has been experiencing a significant amount of pain, hives on his neck, legs, and back, as well as low blood pressure. He does seem to perk up a bit in the evenings but overall he has had a tough week. The good thing with these treatments is that the tough times are generally limited to the treatment time itself and during the weekends he feels very well and he is able to enjoy himself. The other sort of “good” news regarding all of these side effects is that it means Harrison continues to be HAMA negative so we can continue these treatments (there has to be a sliver lining!).

This weekend, however, we are going to put the stressful week behind us and have some fun. Mike flew in tonight for the weekend (it is the first time we have seen him since Hawaii) so Harrison was thrilled to pick him up at the airport. We have just moved into a beautiful new apartment building with an outdoor built-in pool so Saturday will be spent sunning and funning in the pool with Daddy and some of Harrison’s good friends from clinic. He thinks he is having a pool party and I guess he is!

So, for now the plan is to head into week 2 starting Monday rested and relaxed. After that we hope to head home sometime next weekend for about 2 weeks, after which time we will return to NYC for more marrow tests and hopefully cycle 4 of 3F8 antibody treatments.
Our family hopes all of you are enjoying your summer and your loved ones!
Until my next update…be well.

Love,
Gina



Friday, July 2, 2004 7:10 PM CDT

Good Friday evening everyone: I just wanted to drop a quick update to let you all know that Harrison is HAMA negative, which means he continues to qualify for the 3F8 antibodies. This is terrific news and exactly what we were hoping for. As for the rest of the test results, they are still not back. I am hoping to have news about his MIBG scan on Tuesday and bone marrows later in the week—so keep those prayers coming. We are very optimistic for good news as Harrison looks and feels so well!!

Our family hopes all of you have a safe and fun-filled holiday weekend. I will update sometime after Tuesday as the results come in—thank you for checking on us.

Love,
Gina




Saturday, June 26, 2004 7:10 pm CDT

Welcome to Holland

I am often asked to describe the experience of
raising a child with a disability to try to help
people who have not shared that unique experience to
understand it, to imagine how it would feel. It's
like this...

When you are going to have a baby, it's like
planning a fabulous trip to Italy. You buy a bunch
of guidebooks and make your wonderful plans. The
Coliseum, Michelangelo's David, the gondolas in
Venice. You may learn some handy phrases in
Italian. It's all very exciting.

After months of eager anticipation, the day finally
arrives. You pack your bags and off you go.
Several hours later, the plane lands. The flight
attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say, "What do you mean Holland? I
signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you
to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a
different place.

So you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet
a whole new group of people you would have never
met.

It's just a different place. It's slower paced than
Italy, less flashy than Italy. But after you've
been there for a while and catch your breath, you
look around and notice that Holland has windmills,
Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from
Italy, and they're all bragging about what a
wonderful time they had there. And for the rest of
your life, you will say, "Yes, that's where I was
supposed to go. That's what I had planned."

The pain of that will never, ever, ever go away,
because the loss of that dream is a very significant
loss. But if you spend your life mourning the
fact that you didn't get to Italy, you may never be
free to enjoy the very special, the very lovely
things about Holland.

—Sent to me from another Mom who landed in Holland

Well, if I had been mourning Italy I would have definitely lost out on enjoying Hawaii. And that is exactly what my family just spent 10 days doing, ENJOYING ourselves; almost forgetting that we traveled from Holland. It was just wonderful watching Harrison day after day playing, running, and sunning without so much as the mention of cancer or a hospital. I have not seen him this happy, carefree, or “normal” in a long time. Anyone looking at us would have most definitely assumed we traveled from Italy.

Let me start at the beginning with the update I sent to Jimmy our terrific Make-A-Wish volunteer, without whom our trip would have not been possible;
We started our trip with an amazing tour of the command tower, at Newark airport, with Christa the MAW volunteer and Continental Airlines. She was terrific and so was Darcy, who I believe worked either for the airport itself or for Continental. Harrison was just thrilled with the tour! Then it was off to the gate where we boarded our 767 jumbo jet and where Harrison was soon escorted to the cockpit to have a seat in the Captain's Chair; he even got to push some buttons [I guess we should consider ourselves lucky we landed in Honolulu and not Taiwan (smile)]. There was a flight attendant on the plane named Francine who was absolutely amazing. She made such a big deal out of Harrison and boy was he thrilled to be the center of attention and I mean the whole plane knew who he was. She came to get him about half way through the flight to help her deliver the dinner trays, and what a blessing that was; it killed about 30 minutes but I am not sure everyone in the back of the plane got their dinners (smile)! After that, they brought him a hot fudge sundae from the first class cabin and later invited him to help hand out the agricultural claims forms that you need to fill out for customs. He was so funny, when he handed them out to people, they of course, were asking him what they were for, well his response was, "you know they’re for flowers and stuff." Well, he had the whole plane cracking up including the fight crew. We had a GRAND time even before we touched the ground. The flight was no problem and with the help of Francine and the crew Harrison did just fine in the 10 hours and 7 minutes we were on route.

After we arrived in paradise the rest was sun, fun, and relaxation. Harrison had a ball swimming in each of the 3 pools at the hotel and playing on the beach. The highlights of the trip were, of course, swimming with the dolphins, the 100-foot submarine dive, and the Luau. Each of them taught us about life in Hawaii from the unique customs and language to the marine life and mystic of the sea. There is an island belief about the healing power of the sea and the dolphins; I can only pray that Harrison’s swim added to the healing that has already begun.

Having a child with cancer is not something I would ever wish for but the travels this journey leads you on sure are unforgettable in so many ways. In this case, it was a trip of a lifetime creating memories that we will cherish forever filled with pictures of Harrison’s beautiful, happy, and smiling face.

What happens next: Well, we have arrived safely back in New York and are gearing-up for “test week.” Monday is the HAMA test to see if Harrison has developed an antibody to the 3F8 antibodies; Wednesday is bone marrow biopsies; and Thursday is the MIBG scan. This will be Harrison’s first MIBG scan since he began 3F8’s and since his “healing” swim in Hawaii.

After seeing him the last 10 days in Hawaii, regardless of what the “tests” say Harrison looks, feels, and is terrific!!!

Please keep Harrison in your prayers; praying that this coming week’s tests show what we all already know—Harrison is going to be just fine!

Missing our Pina-Coladas already!
Love, Gina and Harrison

Saturday, June 19, 2004 2:15 PM CDT

ALOHA from paradise!! I don’t even know where to begin other than to say what an absolutely WONDERFUL time we are having. Harrison is just thrilled to be here and as you can see from this picture he has had no problem adjusting to the “shaka” or “hang loose” lifestyle of the islands! I can’t tell you all how amazing it is to see him so HAPPY all the time, even the 10 hour and 7 minute flight was no problem thanks to Continental Airlines and the terrific flight crew! What a blessing to, for 10 days, leave all the trappings of hospital life behind!!!

We have gone on a tour of the island, attended an authentic Luau, and Harrison had an unbelievable day swimming with the dolphins. Oh yeah and did I mention he made Grandpa and I rent one of those water bicycle things and paddle out to sea (see pictures)! And in-between all of this we have managed to swim, build sand castles, eat wonderful food, and indulge Harrison in his latest passion—Pina Coladas—we, of course, have not told him that his has no rum in it!!!

I will update more later… have to run…Harrison and Mike are already at the beach…

Have a great weekend!

Love,
a very relaxed and grateful me!

Sunday, June 6, 2004 7:58 PM CDT

Hello everyone, well, I think this is the longest I have gone without updating the site so I just wanted to give you all a quick update before we take off for Hawaii on June 14th. Harrison is doing very well. When I last wrote we were finishing 12 days of radiation. Since then we have enjoyed a brief break for a few days around Memorial Day weekend so we took a quick trip to Grandma’s house at the beach in NC. Right before we left for the beach we learned that Harrison was HAMA negative, which meant that we could continue with antibody treatment—GREAT NEWS!! The other piece of good news was that Harrison’s most recent bone marrow biopsies (after the first round of antibodies) were negative for neuroblastoma!!! So after a brief break for Memorial Day, we returned to NYC to begin cycle 2 on June 1st. One week down one to go. Harrison has had a considerable amount of pain with this round of treatment but no hives or vomiting so all in all he is weathering it well. After this week we will be off to Hawaii for 10 days. I do not expect that I will update before we go but I definitely will upon our return. I even purchased a new cam/digital camera for the trip! I hope you all are having a great summer. Harrison is doing really well; feels great, looks great, and is keeping us all busy.

Until after our trip to paradise—ALOHA!!

Love,
Gina

Monday, May 17, 2004 5:51 PM CDT

Just for this morning, I am
going to step over the laundry,
and pick you up and take you to the park to
play.

Just for this morning, I will
leave the dishes in the sink,
and let you teach me how to put that puzzle
of yours together.

Just for this afternoon, I will
unplug the telephone and
keep the computer off, and sit with you in the
backyard and blow bubbles.

Just for this afternoon, I will
not yell once, not even a
tiny grumble when
you scream and whine for the ice
cream truck, and I will buy you one if
he comes by.

Just for this afternoon, I won't
worry about what you are
going to be when you grow up, or second guess
every decision I have made
where you are concerned.

Just for this afternoon, I will let
you help me bake cookies, and I won't
stand over you trying to fix them.
Just for this afternoon, I will take
us to McDonald's and buy us both a
Happy Meal so you can have both toys.

Just for this evening, I will hold
you in my arms and tell you a story
about how you were born and how
much I love you.

Just for this evening, I will let
you splash in the tub and
not get angry.

Just for this evening, I will let
you stay up late while we sit on the
porch and count all the stars.


Just for this evening, I will
snuggle beside you for hours,
and miss my favorite TV shows.
Just for this evening when I run
my finger through your hair
as you pray, I will simply be grateful that God
has given me the greatest gift ever
given.

I will think about the mothers
And fathers who are searching
for their missing children,
the mothers and fathers who are
visiting their children's graves
instead of their bedrooms, and mothers and
fathers who are in hospital rooms watching
their children suffer senselessly, and screaming inside that they can't
handle it anymore.

And when I kiss you good night I
will hold you a little tighter, a
little longer. It is then, that I will
thank God for you, and ask
him for nothing, except one more day.............
Author Unknown


Hello everyone! I am so sorry that I have taken so long to update—I guess I just needed a little bit of a break for a while. I do apologize if anyone was worried about Harrison due to my lack of updates but he is doing GREAT!!!

We are currently on week 2 of radiation and all is well. Harrison is feeling well, full of energy, and has gained back that kilo (2.2 lbs) he lost during antibody treatments 2 weeks ago. We have this week to go plus 2 more days next week and then we have one week off until the next round of antibodies begins on June 1st. Harrison had his bone marrow tested again last week but the results are still pending. I will post when we get the results.

These last few weeks have really flown by. We are staying busy after treatments and Harrison has been attending school with the GREATEST Kindergarten teacher ever—Ms. Anne Marie. Clinic provides teachers and private lessons for all school-age children and Harrison has been attending Ms. Anne Marie’s class regularly since he turned 5. So after treatment each day he goes to school and on nice afternoons we have been wandering around the city with trips to Dylan’s candy shop and frequent lunches at Harrison’s new favorite place Petaluma, for brick-oven pizza.

It is hard to believe that 2 years ago this past Saturday Harrison was diagnosed with cancer. In a way it has been a long 2 years and it is often hard to remember what life was like pre-cancer but in another way time has gone by in a flash. Either way, fast or slow it has been a difficult 2 years for our family. I am so thankful to have such an amazing support system in, both, my family and old friends at home and new friends that I have been fortunate enough to meet along the way. And I am eternally grateful that Harrison is still in the fight of his life—in our world there is much to be thankful for.

As for the coming weeks ahead more treatment awaits us but so does a wonderful trip to Hawaii for 10 days on June 14th. Harrison, Mike, Grandma, Grandpa, and of course myself are headed to paradise thanks to the Make-A-Wish Foundation. We are all so thrilled about the trip and Harrison is busting at the seams. I will definitely have some great pictures to share and more details as the date approaches. This will be the first real break for Harrison in 2 years, I am so happy he is so strong and feeling well—the timing is perfect.

I will do my best to update more frequently and please, if you have not heard from me assume the BEST—that Harrison is well, we are staying busy, and enjoying the summer—even with a rigorous treatment schedule!

Until my next update… be well and enjoy the warmth of the summer days!

With love,
Gina

Monday, May 3, 2004 3:12 PM CDT

Life always gives you lemonade, sometimes it’s in a crappy paper to-go cup and sometimes it’s in a graceful fluted champagne glass.
—A friend


Good Monday afternoon: Well, Harrison has completed day 1 of week 2 in his treatment cycle. Last week went pretty well, although, he did experience a fair amount of pain in his lower abdomen and residual evening pain in his ankles, hands, and feet. And as the week progressed so did the hives, by Thursday they were big red welts on his back. Thankfully, all the meds his is taking are really helping to control many of these symptoms.

Mike came in for the weekend and he and Harrison enjoyed some time together while Grandma and I took our own timeout on Saturday. And today was a much better day than any day we had last week. Harrison is currently awake on the couch eating his second bowl of cereal, which is more food than he ate the entire treatment last week.

So I am hopeful that this week will be a tolerable one for him and one that proves to be helpful in eradicating the remainder of his marrow disease. We are also hopeful that his body will continue to receive the antibody therapy without interruption (this means pray for NO HAMA).

And now for some totally NORMAL 5 year-old news: Harrison lost his first tooth today. Well, really he lost it sometime between when he went to bed last night and 8:00 this morning but I cannot find it. I don’t imagine I will so he has a plan to write the Tooth Fairy a note stating that his bottom front tooth did indeed come out but has disappeared, all in high hopes of finding “BIG MONEY” under his pillow in the morning (smile).

That about covers what’s happening here. I will update again at the end of the week or the weekend.

Until then…be well.

Love,
Gina

Wednesday, April 28, 2004 4:00 PM CDT

When we experience displeasure we almost always run to fear: how long will this last, can I stop it? etc. As soon as we go there we disconnect from our ability to feel truth and then we feel like a cork floating in a stormy sea, tossed about relentlessly. It is a challenge for each of us to force ourselves to override the ego and reclaim our truth that there is no storm, and there is no tragedy - ever. I ask you to connect to your truth. Don't stop when you feel that there is perfection in this situation somewhere for yourself, go further. See where you are led.
—Christine MacMahan




Hello dear friends, it has been too long since I have written. Time is just flying by and we have had some very joyful as well as stressful moments over the course of the last few weeks. My greatest challenge lately has been finding my way back to flowing more harmoniously with the Universe while overcoming feelings of fear and uncertainty. Let me bring you all up to speed on what has been happening with us…

My last update had us at Grandma’s house at the beach for a wonderful Easter Holiday weekend as you can see from the above photo of Harrison and Logan doing some serious construction work in the sand—Logan is the one with the hair (smile). The weather was beautiful, Harrison had great fun with his cousins, I relaxed, and the Easter Bunny was WAY OVER INDULGENT!!! The bottom of our wonderful weekend nearly fell out on the Tuesday after Easter when I received an email stating that Harrison’s left bone marrow biopsy came back positive and the team was reevaluating Harrison’s treatment plan. Harrison’s bone marrow disease was not new news based on his continually positive MIBG scans, however, we have not had a positive biopsy in several months so naturally there was concern about the possibility of new disease. Needles to say, I was sweating for several days waiting on the remaining test results, which, finally indicated that Harrison’s disease is indeed stable with NO progression. Despite the anxiety induce from the medical news, we were able to enjoy an additional week at home. And once my fears were dispelled and the treatment plan to start antibodies was resumed I was able to exhale and find my way back into the peaceful flow of life.

It is amazing how when things are going well my ego feels so safe and content. However, the minute a fearful circumstance or thought occurs how contracted and unsafe my heart feels almost giving myself permission to let my faith waver from absolute certainty. I guess that is the nature of being human and the experience of touching contrast. How great it is that we are given the ability to feel the difference between love and fear. And how for me, it is about ceasing to resist the fear around my circumstances and about beginning to embrace the experience that has been chosen (one which I cannot change or will away) allowing myself to live more in love and peace than fear and turbulence. It is now, as I sit journaling to you at Harrison’s bedside, watching him receive his antibody treatments that I know love.

So we are in NYC, where on Monday we began the GM-CSF/3F8 antibody treatments. This is a 2-week therapy after which we will begin 14 days of radiation to Harrison’s orbits. And then, provided he does not develop a HAMA (human anti-mouse antibody), we will begin a second cycle of 3F8’s on May 31st. Harrison is doing well with the treatments, experiencing some pain in his lower abdomen, legs, feet, and throat as well as a small breakout of hives all very typical and common for this treatment. But for the most part things are going well and the pain medications (morphine and dilauded), hot packs, gentle massage, and a lot of TLC from Mom and Grandma are managing his discomfort.

Prior to coming to NYC Harrison was feeling terrific and he was able to participate in his cousin Emma’s equestrian themed birthday party complete with horsing back riding and hay ride (YEE HA!- see pictures). He was excited to come back to the apartment and, of course, spent most of Sunday revisiting all of his favorite toys. He continues to thrill and amaze us with his resilience and vitality. He has more life, will, and determination than anyone I have ever known. I am forever humbled and grateful to share his life and his journey and to stand shadowed by his brilliant light.

Until my next update…be well.

Love,
Gina

Friday, April 9, 2004 4:53 PM CDT

I love you from the Sun to Pluto and back again and that’s really far!
Harrison


It has been a while since I have updated but we were enjoying some excellent down time at home last week. Harrison had a ball running, jumping, and playing with his cousins and friends at home. I enjoyed some dinners out and good friends and family. All in all, it was an excellent time home with beautiful weather. We arrived on Monday night in NYC to begin “scan week.” All went well in clinic and some of the results are in. So far, it looks as though Harrison’s disease remains stable/unchanged from this last round of chemo. Although, we always hope to hear the words “no evidence of disease” we are still grateful for the gift of stability. Harrison is happy, looks and feels great and that, to me, is the most precious gift of all.

The CT scan and MIBG are about the same as March’s scans and the bone marrows, MRI, and urine markers are still pending. After 3 days of tests, Harrison and I flew to Grandma and Grandpa’s house (at the beach!) last night for the Holiday weekend. Our whole family is here and we are having a great time. The sun is shining, the temp is in the upper 70’s, and the beach is on the schedule for tomorrow.

The plan is to return to NYC for April 19th where Harrison will begin the 3F8 antibody therapy. Although, we are not cancer free yet we are still very hopeful and positive that those days are coming soon. Until then, we will continue to support Harrison with, both, medicine and lots of love.

Thank you for checking in. Our family wishes you all a wonderful start of spring and a Happy Holiday! I will update again when we return to NYC with more details about this new therapy.

Love, Gina

Thursday, March 25, 2004 5:08 PM CST

Hi, I just wanted to give a very brief update to let everyone know that we are just fine. Harrison has done beautifully with this round of chemo and is feeling well. His counts, as of today, show him to be nearly recovered and since we have no pressing business in clinic next week and he looks and feels great we are able to head to North Carolina tomorrow for almost 9 days!!! We have not been home since the end of January and here it is almost April so we are all looking forward to the warm weather and seeing our family.

Harrison and I will be back in NYC the week of April 5th for “scan week” and all the usual tests: MIBG, CT, MRI, bone marrows, and urine markers. I will update again from the warm sunny south!

I hope you and your families are all well.

Love,
Gina

Thursday, March 18, 2004 3:06 PM CST

We are all on a journey together…
To the center of the universe…
Look deep
Into yourself, into another.
It is to a center which is everywhere
That is the holy journey…
First you need only look:
Notice and honor the radiance of
Everything about you…
Play in this universe. Tend
All these shinning things around you:
The smallest plant, the creatures and
objects in your care.
Be gentle and nurture. Listen…
As we experience and accept
All that we really are…
We grow in care.
We begin to embrace others
As ourselves, and learn to live
As one among many…
—Anne Hillman




Today is a day of celebration in its purest and most primal form…everyday is a day to celebrate Harrison’s life but today I am giving thanks; for 5 years ago today, God graced me with this wonderful being. HAPPY BIRTHDAY HARRISON!!! I cannot believe it has been 5 years since Mike and I were blessed with our baby. In reminiscing about the years past, I found myself slightly saddened by remembering those care free days when my biggest worries were, how many playdates would we have that week, finding a sitter for date night with Mike, and by far my biggest medical fear was about whether or not he was eating enough vegetables. Now, I worry do we have high enough cell counts to have a play date, a date with my husband must include a 600 mile plane trip, and my biggest medical worry is saving his life. WOW, what contrast, it is amazing how simple life can seem only when it is made complicated by the unexpected. So, I allowed myself to be “slightly” saddened during my trip down memory lane but I was quickly reminded of the beauty and joy of the last year despite the cancer, the hospital stays, and the daily battles with the fear of loosing Harrison.

At this very moment last year Harrison was in surgery with Dr. LaQuaglia. He was surprised that we elected to have surgery on this day but I could not think of a better day to honor Harrison’s life than with a chance to live. The tumor had to go—and it did! So today I am sitting in the apartment in New Jersey, looking at all the snow, and giving thanks that Harrison is next door in Grandma’s bedroom loudly whooping it up with the about one dozen new birthday toys! Yes, blood counts are low and a fever could be just a few hours away but he is here, he is well, and we have had an amazing journey in the last year—amazing in both the best and the worst sense of the word.

People often ask me why I never seem angry, or wonder how I stay for the most part positive about our life and the cancer experience. It is not that at times I am not angry, frustrated, or even have moments of self pity; it is just that I do not have control over what has happened to us. I do, however, have control over how I react to it. I can choose my experience and to a degree Harrison’s too. I choose not to let the cancer decide my experience. His Holiness the Dalai Lama once said, “history is history and no one can change the past.” I cannot change that Harrison has cancer but I can control how I move through the experience with him. So yes, we chose surgery on a significant day, so 20 years from now Harrison, Mike, and I will still be giving thanks that he was not only born on this day but was born again, and again, and again as we take one year, one day, and one moment at a time giving thanks for each of them along the way.


On the medical front:
Harrison continues to do well fighting hard for his cell counts to recover. He had a wonderful birthday celebration in clinic yesterday complete with a construction cake [complements of his Grandmother’s creative hands], presents, and singing thanks to all the Child Life specialists at MSKCC. After the celebration, Harrison and one of his favorite volunteers, Geoff, got down to some serious building with the new lego set he received. Thank you to everyone at clinic for making Harrison’s 5th birthday extra special! Harrison’s blood counts were low but no transfusions needed so basically he spent the day in clinic celebrating and then we left!
As for what’s next? For now, we will wait for Harrison’s body to recover from the chemo with plans to do a full test work up on the week of April 5th. We should have Easter week off and plan to head back to NC and to Grandma and Grandpa’s house at the beach for the holiday weekend—hoping to soak in some Carolina sunshine and fresh air [smile]! After that he is tentatively on the antibody schedule at MSKCC for the week of April 19th. I will, of course, keep you all posted during scan week. Thank you for sharing this special day with us!

***See new pictures of the birthday party***

Thursday, March 11, 2004 3:04 PM CST

God puts rainbows in the clouds
so that each of us—
in the dullest
and most dreary moments—
can see a possibility
of hope.
—Maya Angelou



Well, again I am sorry it has been so long since my last update but it has been a tough beginning of the week here in NYC. Let me start where I last left off…oh yes, test results… I am just thrilled to report that the written word is as good as the oral word. Harrison’s scan results did indeed indicate a response to this last chemo with significant improvements to the pelvic bones and the left orbit area (the eye bones). The neuroblastoma team was very pleased with the results and I feel much better about moving forward with this next round of chemo after having official information that shows us he is responding. With all that said, I had to remind myself that this was a good choice when Harrison was sick on his stomach for over 12 hours on Monday and Tuesday morning. The 10-hour chemo days on Monday and Tuesday were really compounded by an all-nighter on Monday with Harrison in poor shape. However, Harrison was a real trooper rebounding as only he can and by yesterday he was doing his chemo in the playroom. Wednesday and today were sooooooo much better and he seems to be feeling well. We took our last trip to the mall today (cell counts are rapidly falling) and purchased a box of LEGOS to keep us busy for the next few days.

Harrison never ceases to amaze me, and those around him. Everyone has commented on his resilience and strength. I am so grateful that he is strong enough to fight so hard for his own life. I am humbled and overwhelmed by him everyday; when people ask me which little boy in the playroom is mine, I am privileged to say, “it is Harrison.” So we will continue to hold fast to our prayers that Harrison is one step closer to a cancer free life and as always we will keep looking up to see God’s rainbows.
With love and gratitude, Gina

** New pictures of Harrison 2 weeks ago at the Museum of Natural History!

Saturday, March 6, 2004 11:00 AM CST

Hello everyone: Sorry I did not update on Friday but the official reports of Harrison’s scans were not available yet and I hesitate to share information until I have it in “good ol’ black and white.” However, the kindness and interest that many of you have shown in your thoughtful phone calls and emails has prompted me to update even without an official report. Harrison had an MIBG scan on Wednesday, which has been preliminarily reviewed by his team of oncologists and the radiation oncologist. They have collectively determined that there was a significant enough response, to the last round of high dose chemotherapy to warrant another round. This is actually excellent news from the disease perspective. I am, however a little nervous about the chemo but I am hoping and praying that Harrison will remain safe with few side effects and a good disease response. The CT scan results were also not available yet but his last CT was his cleanest ever and with the slight improvement in the MIBG, I think the CT results, too, will be good. The bone marrow biopsies and the MRI of his orbits were both cancelled. The general feeling was that the MIBG provided enough evidence to move forward with the chemo, so the other tests will be delayed until after this round of treatment. Harrison’s radiation simulation was also cancelled based on potential future changes in the disease status of the orbits. So as it stands today, Saturday, March 6th, Harrison will begin 5 days of high dose cyclophosphamide/irinotecan on Monday. I will update again after I receive the official radiology report regarding the MIBG and CT scans. Please keep Harrison in your prayers for an uneventful 12th round of chemotherapy. Thank you for continuing to share our journey. Love, Gina




Sunday, Feb. 29, 2004

If you want to become whole,
let yourself be partial.
If you want to become straight,
let yourself be crooked.
If you want to become full,
let yourself be empty.
If you want to be reborn,
let yourself die.
If you want to be given everything,
give everything up.

LAO-TZU


Well, as life with cancer is uncertain so too is the schedule of a family during life with cancer. And as it turns out, we will not be returning to North Carolina in the near future. I’ll start my update with where I left off last week. We were released from the hospital on Saturday, Feb. 21st with a plan to return to clinic on Monday the 23rd for a radiation consult and labs with a tentative plan to return home to NC around Wednesday or Thursday. Harrison’s counts, as of Monday, were very good and it looked as though he was on his way to recovery. Well, that lasted all of 24 hours, and by Tuesday afternoon Harrison had a fever of 102.0. So, off to clinic we went again but because we had a white cell count of 5.4 he was not put inpatient and they were able to run IV antibiotics in the clinic. His fever lasted until Thursday morning around 1:00 am so needless to say we spent everyday in clinic receiving antibiotics and then finally, on Friday, and after several tests including 3 cultures of his central line and a urine culture, a chest x-ray revealed that Harrison did indeed have pneumonia. It was difficult to assess the problem because he simply was not, in anyway, symptomatic. He was running, playing, his lungs sounded clear, and all in all he was in fairly good shape. He is now on a strong oral antibiotic.

As for the coming week, as you may have noticed, in the beginning of my update, I mentioned a radiation consult. Harrison had, this Fall, completed 14 days of radiation to his primary tumor site and all continues to be well in that area. The current source of interest is his left orbit (eye bone) as well as two other bones in the upper cheek area. These spots are extremely tiny and there was even an initial question if they were too small to radiate but as it turns out it is possible and the general consensus is that this is a fair and reasonable approach to treating this area. Neuroblastoma is very responsive to radiation and the skull area is NOT a place you want to give neuroblastoma a fighting chance to run ramped. We will have Harrison’s radiation simulation on Monday, March 8th followed, at some point, by 12 days of radiation.

As for the near future and next week, it has been decided that we need to assess whether or not this last round of chemo was effective. So we will have another “test week.” Wednesday, March 3rd, Harrison will have an MIBG scan and Thursday the 4th he will have a CT scan and bone marrow biopsies. The results of these tests will determine the next course of action. I think the idea is that another round of high dose chemo is just too risky if there was no improvement in his disease status. However, if the chemo is actually working then the benefits would out way the risks and we would consider another high dose round. So we are again at a very familiar place, a crossroads, where we pray and wait for the results that will lead us to the next part of our journey on our quest to get Harrison to NED (no evidence of disease). I will post later in the week as the results of Harrison’s tests become available. To my friends and family at home, I miss you all and I am grateful for your love and support. If you need to warm up you can consider a trip North but leave the snow home! Mike and Harrison’s Aunt Sheila did just that and flew in for the weekend. They just arrived back at the apartment after a warm and beautiful day at the park and lunch. Harrison is having a ball with Daddy and Aunt Sheila and seems to be feeling great! And I am enjoying the reinforcements—thanks Daddy and Sheila!

Our family continues to remain more than hopeful by following Harrison’s lead. He is always so optimistic and full of life that at times it is hard to fathom a less than favorable outcome. He is the light of my life, my greatest joy, and my greatest strength. He finds a way to weather every storm and to come out stronger for it. I wonder if he will ever truly comprehend the magnitude of his endurance and what an amazing child he really is. My son is my hero and my one true love. With a heart swelled from love and pride, Gina

Sunday, February 22, 2004 5:39 PM CST

A permanent state of transition is man’s most noble condition.
Juan Ramon Jimenez



Good evening all: Well, when we received the news Saturday morning that Harrison’s ANC came in [.1] below where we needed to be to check out, I am not sure if it was the crazed caged animal look in my eyes or the tear filled eyes that came next indicating a pending breakdown or if they had just had enough of Harrison terrorizing the hallways and other the patients, but the docs were kind enough to let us finally go on day 11 of our stay. HOORAY!!! So by Saturday afternoon we were back at our apartment and we were all really glad to be home. Harrison has been feeling fine and enjoying the toys he has missed for the last week and a half. So all in all life is good!

We need to spend this week in clinic checking blood counts and as soon as Harrison has fully recovered we will head to NC for about 2 weeks, until the next round of treatment—the exact plan is still in the creative stages [smile]. I wanted to thank all of you for your prayers for Harrison’s safety during the long 13 days with no white cells. He has made it through yet another round of intense chemotherapy and we are hopeful that it has helped to rid him of the remaining cancer cells. Thank you for checking in and I look forward to updating you all again from back home in NC. With love and gratitude, for the continued health and safety of my child and the blessing of your friendships, Gina

Friday, February 20, 2004 10:37 AM CST

I seek the gift of wisdom in every experience.

Each event in your life, whether you perceive it to be positive or
negative, is indeed divine grace in action.

Each creation, each event, seeks to return you to the essence of who
you are, to return you to love.

You can choose to shift your perception of a negative condition by
seeking the gift of wisdom within it.

John Payne.



Hello everyone: Well, it is day 10 of our inpatient stay. Harrison is GREAT but his counts are very slow to recover this time. He is feeling very well, eating, playing, and is often unhooked from his IV pole for most of the day between antibiotics. We have seen some gains today with his white cells so hopefully it will only be another day or two. So far, the stay has been fine. We have been lucky and have only had a roommate for 2 nights and have otherwise had the room to ourselves and the nurses are terrific. Harrison is weathering the stay quite well and is keeping the wonderful volunteers and Grandma and Grandpa busy in the playroom most of the day but we will be grateful to get back to our beautiful apartment soon. As for me, I am doing my best to heed the amazing quote above and seek the higher purpose for our rather long inpatient detour.
Keeping on dancing for us; Harrison is doing so well.

I will update again soon with pictures of Harrison sporting his new “Mr. Clean” look. Yes, the recent round of chemo look care of all that beautiful hair, but I must say, if you are going to be bald you could do worse than to be as cute as he is with a perfectly shaped head!!! Besides, Harrison's feelings about his recent change in hairstyles is quite positive, “good at least now I don’t have to wash my hair!” [smile]
With love and gratitude, Gina

Monday, February 16, 2004 3:20 PM CST

Just wanted to drop a quick note to let you all know that we are still in the hospital. Harrison is GREAT but still not enough white cells to "blow the joint," as Harrison says. So keep on dancing!! I will update again soon.
Love,
Gina



Thursday, Feb 12, 2004

It is the quiet time…before the Hurricane.
—Vicki




Vicki is one of the wonderful gals who works in the clinic at MSKCC taking care of our children. She nicknamed Harrison “Hurricane” about a year ago because he runs around clinic literally like a Hurricane full of life and zest creating a whirlwind as he whips by people. When Vicki saw Harrison in clinic yesterday it made her sad to see him so wiped out; she said, “it looks like the quiet time before the hurricane comes” and smiled lovingly at him.

Well I no sooner updated you all, when we found ourselves enjoying the view from the 9th floor of the brand new peds floor of MSKCC. Yes, you guessed it on Wednesday morning we got the dreaded fever and went inpatient. Harrison was very very puny on Wednesday and slept most of the day with a fever for about 12 hours—it broke about 9 pm last night and has not returned since (ok go knock on something wood for me!). The culture of his mediport is still negative—this is a good thing—no infection but we also still have no white cells so we have signed on for a room at least until the weekend. He received a red blood transfusion today and is feeling much better. He is currently down in the playroom with Grandma and some volunteers playing a dinosaur game. So things are not so bad, I can definitely handle a little inpatient time as long as there is no raging fever and no infection. And I must admit, we are still riding high on the wave of joy from Harrison’s latest test results.

One of the many morsels of wisdom I have had the good fortune to learn, live, and understand, thanks to this journey, is that so much of life’s events are out of our control; however, what is within my control is how I choose to move through the experience. There are so many moments that lack grace, peace, and understanding when your child has cancer but I am doing my very best to move through our inpatient stay with as little fear and as much love as possible. It does not serve Harrison nor does it honor the process to offer him anything less.

So I will close this journey entry by wishing all of you a very Happy Valentine’s Day—give your loved ones a little extra hug today and never let a day go by without showing them how much they mean to you.
Love, Gina— currently on the 9th floor of MSKCC and doing the WHITE CELL DANCE!

Tuesday, February 10, 2004 12:57 AM CST

Things change moment to moment, things are impermanent. We worry over the past, we anticipate the future, and we barely perceive a shred of the passing moment.
—His Holiness The Dalai Lama



Good afternoon everyone: Well, we have made it to day 9 post chemo and Harrison seems to be doing very well. We had a clinic visit yesterday for a CBC and counts are definitely falling but spirits remain high. Harrison’s HGB was only 8.9 but you would never know it based on how great he looks and how much energy he has. His spirit and fun disposition never cease to amaze me, even when the odds are stacked against him. It is reasonable to assume we will need red blood tomorrow and platelets by Friday. We will also start GCSF shots on Wednesday to help increase his white cell count which yesterday was 0.0. UGH!!! We have not had these shots in a year—but Grandma and I are prepared and replenished the prize bucket for the nightly injections. It is amazing how a small prize helps with the pain and anxiety of “the shot.” Although, things continue to go well we are not out of the woods yet. However, we remain hopeful that we will avoid the usual “f & n” (fever due to neutropenia) and the inpatient stay that follows as a direct consequence of the fever. If not we will make the best of it.

On a much more social and brighter note, Harrison and Mike had a great weekend together. They did some much needed bonding and playing while Grandma and I enjoyed some much needed “us” time. We had a nice girls day on Sunday, including some shopping for ourselves and lunch out. If you have to be stuck in NYC you might as well take advantage of the excellent shopping and food.

I will end this journal entry by sharing some wonderful news; Harrison's urine markers were in on Monday and the results were terrific. For those non-nb readers, HVA and VMA levels in the urine are often part of the diagnostic process for neuroblastoma. For some children, they are an excellent non-evasive method of checking disease status, progression, and/or response. Harrison’s markers have, from the beginning, been a great way to monitor his disease status. They have consistently come down with every treatment but we have been stuck at a certain level for the last 6 months. Until now—his current urine markers are within NORMAL range for the first time since we were diagnosed in May of 2002!!! Way to go Harrison. So the scan results have officially been corroborated with his urine markers indicating that things are indeed improving for Harrison. And the best indicator of all was the smile on Dr. Kushner’s face when he delivered the news to Mike and I during Monday’s clinic visit. I was so happy Mike was there to share in that wonderful moment!

HVA (<19 normal) Harrison’s at diagnosis somewhere above 300
Harrison current HVA 16

VMA (<9 normal) Harrison’s at diagnosis somewhere above 100
Harrison’s current VMA 8

WAY TO GO HARRISON!!!!! WE LOVE YOU TO INFINITY AND BEYOND!!!
Have a wonderful week and I will update with any news as the week unfolds. Personally, my wish is for an UNeventful week filled with nothing more than a few transfusions and some much needed white cells. GROW WHITE CELLS GROW! With love and MUCH gratitude, Gina

Thursday, February 5, 2004 6:04 PM CST

The wind of God's Grace is always blowing, and you need to raise your sail
Vivekananda



Good evening everyone: Well, the CATS lost on Sunday but Harrison was our BIG winner this week. I finally received the results of the MIBG and bone marrows and the news continues to be GOOD! The MIBG, although still positive, states that the “Overall lesion intensity has diminished, suggesting treatment response.” HOORAY for Harrison! This is indeed good news, I will take any day when the disease shows response to treatment. As for the bone marrows, the right was negative for neuroblastoma and the left suggests a “minute focus of cells suspicious for metastatic neuroblastoma.” What does this mean? Well, it means that it if we error on the side of caution we assume that there is still nb present, which comes as no surprise since the MIBG is positive but it is getting harder and harder to detect. So between these latest results, the stable MRI, and his “cleanest” CT ever we could not be more thrilled with how Harrison is responding to the current treatment plan. God’s grace is blowing and we are raising our sails.

So with some great test results under our belt we began Monday morning bright and early with high dose cyclophosphamide (cytoxan) and irinotecan. It was a long day and Harrison seemed a little puny by the end of it but was weathering it well. Tuesday was another story; he was sick several times and slept for over 14 hours. It was sad to see him feeling so poorly after so many months of feeling so well but I remained confident that we made the right decision in doing this line of chemo and that we would come out on top. And by Wednesday all was looking much better. Wednesday through Friday’s treatment does not include the cytoxan, which is a much tougher drug than the irinotecan and Harrison was feeling so much better. By today he was again bouncing around, eating, laughing, and playing. Mom insisted that after 2 very rough days that he deserved a trip to Toys “R” Us before his counts started to drop—so off we went and as you can imagine he racked-up some cool new Transformers! So here we are post dinner and Harrison is playing enjoying his new loot and all is well for now. We are quite aware that next week will bring low counts, transfusions, and a possible inpatient stay but we are ready. We will stay in NYC for the next few weeks until Harrison recovers and we have a firm idea of what will come next.

For now, although we have not heard the word NED [No Evidence of Disease] we are still so grateful to hear that he is showing improvement and response. Any nb parent will tell you, given the options stable with improvement is a gift. So we remain humbled and honored to continue our journey always with the hope of cancer free days ahead. I will update again after the weekend. Mike is flying up and we are looking forward to our family time. With love and gratitude, Gina

Sunday, February 1, 2004 3:56 PM CST

God's plan for every life will only be revealed in glimpses. At times,
it may appear to confound human logic. To do our part, we are required
to step out of our comfort zone. We must trust God more than we fear
the unknown.

Mary Manin Morrissey




Good afternoon everyone: Well, Harrison and I made it safely to NYC, on Tuesday, afternoon just as the snow flurries started. We had several inches of snow here on Wednesday but we were able to make it with no problem to clinic in time for Harrison’s tests. Wednesday consisted of bone marrow biopsies, CT scan, and echocardiogram. Thursday’s test was an MRI of his head and Friday, in the late afternoon, was the MIBG. I was able to get the CT and MRI results on Friday and I am just thrilled to report that things are good. The CT scan showed some improvement in the lymph nodes and in the postoperative tissue and the MRI was stable. Harrison docs were very pleased with results so far. The MIBG results should be available on Monday. We are so grateful for the continued news of Harrison’s improvement and stability. We can only hope that our good fortune continues in the months and weeks ahead as we move further along on our journey.

As for what is next; well, our immediate plans are to shout very loudly today as we route for our favorite football team—THE CAROLINA PANTHERS!!! GO CATS GO!!! As for the treatment plan; it looks like Monday is a go for the high dose chemotherapy. Harrison has not had high dose chemo since February 2003 and it will be a tough road but one we know we can handle. Harrison is stronger than he has ever been and we feel in our hearts we are making the best decision to try and save his life. We trust his team of doctors to give us good sound medical advice and I trust my intuitive connection with Harrison enough to know that it is the highest choice for him in this moment. So with all that said and decided, we will forge ahead on Monday keeping our hearts and minds focused on the positives.

Mike continues to do well with his physical therapy and will be coming up for the weekends over the course of the next few weeks, as we will be staying in NYC for now. Mom (grandma), as usual, is standing by my side helping me care for Harrison. Dad, too, is doing well and getting stronger everyday. So all in all we are very blessed.

As for Harrison’s friends, I was able to spend some time with Chanda (Jake’s mom) when I was last home and I speak to her regularly on the phone. Her and Brian are holding up well considering the loss they have endured. Please continue to pray for their strength and healing. Harrison’s other friend Jordan, who I mentioned to you several weeks ago is still fighting and his mom, Cheryl, has recently created a website for him. If you have time stop by and take a look at this precious child and leave them a note of love in the guestbook. Congratulations to Bryce who recently had scans that show him to be disease free!! Way to go Bryce! And please pray for Christi who will begin accutane with the hopes of it keeping her remaining disease stable; for Simon who is battling disease progression; and for Michael R. who has scans this coming week.

Thank you for checking in on our family. We are so grateful for all the love and support. Monday and Tuesday will be very long days in clinic so I will do my best to update again sometime after Wednesday afternoon. Please keep Harrison surrounded with love, light, and prayer as he faces the days ahead. With love and gratitude, Gina


Friday, January 23, 2004 3:12 PM CST

The solution to the problem of the day is the awakening of
the consciousness of humanity to the divinity within.
—Hazrat Inayat Khan


Good afternoon everyone: Well, I feel as though I am really back; back emotionally and spiritually that is. As you can plainly see from my last few very brief, very removed, and very distant journal entries I have not been myself lately. It has taken a couple of weeks, after the death of Jake as well as some difficult family times, for me to move through some emotional healing and pockets of fear and although my heart still aches with the loss of precious Jake I feel as though some very tough places were touch and mended. I hope that as Harrison and I move forward on this journey I am able to continue to grow and change becoming the better for it.

With all this said, I will share with you what I know of our immediate plans for Harrison’s treatment. After a considerable number of emails with Dr. Kushner, the team in NYC has recommended that Harrison have a full battery of tests to asses the disease status (which, of course, I always hope will be none) and to proceed with one or possibly two rounds of high dose chemotherapy with a goal of returning to the 3F8 antibody therapy that Harrison did in April and May of last year, before getting a HAMA. To refresh you on what a HAMA is; it is a human- anti-mouse-antibody. In laymen’s terms Harrison developed an antibody to the antibodies making him ineligible to continue the treatment. Often the HAMA will go away on its own after a period of time, which in Harrison’s case has happened making him now eligible for the treatments. We are anxious to return to antibodies because Harrison’s marrow did show a response to this therapy. So, the plan is to return to NYC early next week where Harrison will have all the standard NB tests done; MRI, bone marrow biopsies, MIBG, CT, echocardiogram, and urine analysis. After which (on Monday, Feb. 2nd) we will start high dose chemo pending no surprises showing on the previous week’s tests.

Harrison is currently doing very well. He suffered no ill side effects from the last 2 rounds of Irinotecan and his counts recovered well. He is full of energy, eating, playing, and really enjoying his family and friends. Harrison spends most of his days playing full force with Logan (his cousin). They truly love one another and are just thrilled to see each other daily. We have had several visits with Dr. McMahon (our NC based oncologist) and he thought Harrison looked just terrific. Dr. McMahon is wonderfully supportive and an important part of Harrison’s medical team; we are grateful to have him still caring for Harrison while we are home. The rest of the family is also well. My father is still in NYC with my mom recovering from his surgery. He was released on Monday and is recouping at the apartment, hopefully he is enjoying some quiet time before Harrison and I arrive on Tuesday. Mike is doing well, still attending physical therapy sessions three times a week but walking better everyday. We are grateful for everyone’s current health status and to have come this far.

I will continue my update from NYC, after Harrison’s test work-up. Please keep Harrison in your prayers. Our greatest hope is that these tests will show that the last 2 rounds of chemo have kept Harrison’s disease stable or has helped it to improve and that some day he will enjoy life as a cancer free toddler.
As always with love and gratitude, Gina

Saturday, January 17, 2004 9:51 PM CST

Good evening everyone: Just wanted to write a quick note to let everyone that Dad did very well in surgery. The surgeon was very please and thought the disease was very localized. Dad spent last night in recovery and was moved to a regular room this morning. Thank you to everyone who has called and sent me personal emails. Our family is so grateful to have so much love and support. Dad should be released on Monday or Tuesday and will stay in NYC for a few weeks to recover and have follow-up appointments. As for Harrison, there is not a firm plan yet. I should know something early next week. My plan is, however, to return with Harrison to NYC sometime next week in preparation for some treatment starting around the 26th of Jan. Again, thank you to everyone who has been saying prayers and sending love and light to my family.
With love and gratitude, Gina

Wednesday, January 14, 2004 1:17 PM CST

Hello everyone: Just wanted to drop a quick note to let you all know that things are going fine. Harrison is day 10 from his last round of chemotherapy and seems to be doing very well. He has been really enjoying his cousins and his Dad for some very serious playtime. There is still no news about what comes next. I am waiting to hear from Dr. Kushner regarding his recommendations. I should know something by next week. I am heading to NYC tomorrow without Harrison. My Dad is having surgery at Sloan on Friday so I am heading up for that. His prognosis is good and the surgeon is very confident that they will be 100% successful in removing the cancer in his prostate gland. So as you are saying those prayers for Harrison sneak in a few for Harrison’s grandpa too. Thanks and I will update again after I return from NYC and have idea of what is next for Harrison.

Love,
Gina

Wednesday, January 7, 2004 3:09 PM CST

You don’t have to thank God for the bad things—
just for being there in the midst of them.
—Dennis Jernigan




Hello everyone: Sorry it has taken so long for me to update but the Holidays were so difficult this year with the passing of Jake and my father-in-law. There have been times of both such joy and sadness for us this year as for many families. I am looking forward to 2004 and a year filled with hope, the promise of good health, and peace for all. We are currently in NYC for Harrison’s week of chemotherapy. He seems to be doing well, although he is a little more affected by this treament than the last. The side effects seem to be building with each round. We will head home on Friday for a week or so and then back to NYC for more treatment. At this time I am not sure what the next step will be but there definitely will be a next step. I wish I had more to say and to share— something of joy and inspiration but sadness overcomes me as I sit in reflection of the events of the last few months. I will update when the new plan unfolds. Until then, thank you for your continued thoughts, good wishes, and prayers.
Love,
Gina

Sunday, December 28, 2003 12:43 AM CST

A NEW STAR SHINES IN THE SKY.

—in loving memory of Harrison’s best friend and guardian angel Jacob Aaron Courtney 1999-2003. Our love and memories of you will live on forever.


Harrison’s grandfather, William Nichols, also passed very suddenly and peacefully during this holiday season, December 26, 2003; we loved him very much.

Wednesday, December 17, 2003 8:48 PM CST

December 19, 2003 12:00pm

It is with a broken heart that I write to you with news that Jake gained his angel wings last night. He passed peacefully in Chanda and Brian’s arms and is now free from pain and suffering. Please keep their family in your prayers during this very devastating time. I will update more when I return to NC
Love,
Gina






Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there doubt, faith;
Where there despair, light;
Where there is sadness, joy;
O divine Master, grant that I may not so much seek
To be consoled as to console,
To be understood as to understand,
To be loved as to love;
For it is in giving that we receive;
It is in pardoning that we are pardoned;
It is in dying to self that we are born to eternal life.
—Saint Francis of Assisi




Hello everyone: Well, the week is going well and Harrison is tolerating the chemo with no problem. He does not seem to be experiencing any side effects and is feeling just fine. We are going to be heading home to NC on Friday for the holidays and will return to NYC for chemo on Jan 5th; at least that is the current plan. We have enjoyed our time in NYC taking advantage of great stores and doing some last minute Christmas shopping as well as taking in all the Holiday attractions. Yesterday we took Harrison to see the tree at Rockefeller Center but as you can see from the new PHOTOS he fell asleep on the stroll down 5th Ave and did not even see the tree. Mom and I took advantage of the afternoon nap and had a very civilized lunch of pasta and wine in a wonderful Italian restaurant on 51st and 5th Ave. After which, we met my friends for holiday spirits at the Oak Room of the Plaza Hotel. By then Harrison awoke and the promised trip to FAO Schwartz came next. All in all, it was a delightful day that was very much needed by me (emotionally exhausted cancer Mom). It was really nice to do something normal and NON-cancer related for a few hours. Things here in NYC have been fine for Harrison but two of our very close friends are having a really tough time right now and it just has me brokenhearted.

As many of you know one of Harrison’s closest friends JAKE is really struggling right now. He is in NC at home but is on round the clock oxygen and is experiencing some pain. He is the sweetest little boy with the sweetest little voice. He calls my Mom Gwandma Wose (grandma Rose)— I love hearing that precious voice. I will be going over to see him on Sat. and spending some time with Chanda. I am, however, at a loss for what so say or how to comfort her at a time like this. It seems so unfair to see a child suffer anytime during the year but Christmas time seems so extremely cruel. I guess I only have my love and friendship to offer and my prayers for peace for her, Brian, and Jake.

We have another little friend whose family is also facing a very difficult Christmas this year. Jordan is 3 years old and is also treated at Sloan with Harrison. Cheryl (his mom) and I met last year and have kept up with our friendship even when she is in Texas and I am in NC. We were able to spend time with each other a month or so ago when Jordan was last in NYC for treatment. Jordan has recently relapsed after one year NED. He is currently home in Texas and most likely will not receive any further therapy. Cheryl and Don have been so brave in making decisions that are best for Jordan. He does not have a web site but I am hoping Cheryl will email me pictures that I can put on Harrison’s photo page. I will keep you all posted on Jordan.

Please think of Jordan, Jake, and their families this holiday season. It saddens me so much to think of Jake and Jordan suffering and it is so strange to have mixed emotions about the welfare of your own child. I am so grateful that Harrison is alive and well, despite the remaining cancer, but it feels odd to celebrate his life and Christmas when other children we love are not well. In moments of clarity, moments when my connection with my spirit and God is so strong and absent of doubt I am certain that there is purpose and perfection in what we are all going through. But those moments are sometimes assaulted with darkness when I see a child and a family suffering. Those are the moments when we tend to reach for anything to hang onto and it is in those moments that my faith wavers and the clarity is obscured. For me, it is about pulling out of the illusion and reestablishing that connection of truth with God in order to move forward everyday. Sometimes it is hard to imagine that life will ever be normal again. The more I think about it the more I realize that I am going to have to redefine what “normal” means now because no matter what happens, good or bad, life will never be as I once defined it. I have come to realize that through each of my experiences my definition of self and the world around me is forever changing and growing.

Thank you for letting me share my thoughts and feelings with you all. Sometimes the simple act of writing and sharing is so healing. I will update again when we get settled in NC. Thank you for checking in on us and for the continued prayers for Harrison and his friends.
With love and gratitude, Gina

Wednesday, December 10, 2003 10:45 AM CST

By three methods may we learn wisdom: First, by reflection, which is noblest; second, by imitation, which is easiest; and third by experience, which is bitterest.
CONFUCIUS



Good morning everyone: I know you all have been waiting to here a more detailed explanation of the test results and what is next for Harrison and our family. I do not usually post detailed medical updates but today I am so you all can really understand what is happening. Well, I had a great meeting with Dr. Kushner late yesterday afternoon, after waiting all day in clinic to see him. I would like to mention how hard Dr. Kushner works; his tireless efforts were in full swing yesterday treating over 25 children in the clinic, working as the attending on the impatient floor, and seeing parents like myself who are working to formulate a plan to save their children’s lives. He is a remarkable man and I commend his efforts; we are blessed to have him on our side. With all that said, let me give you a more detailed update about what is happening. Harrison’s CT scan, as I mentioned on my earlier post, shows NO evidence of new disease and his lymph nodes remain within normal limit size, which is a real blessing in the world of the ever aggressive neuroblastoma. His MIBG scan, which is a nuclear medicine scan that “illuminates” NB cells is still positive showing “uptake” (little yellow spots) in the pelvic bones, humeri (thigh) bone, lumbar region (back bone), the bilateral femora (both shoulder bones), and again in the left eye bone (which apparently never went away). All these spots together translate into bone marrow still positive for disease. The places that I mentioned are the places in your body that have the most concentrated amounts of marrow, thus the spots light-up consistent with marrow disease. So, basically this scan was identical to Sept’s scan. This is both the good and bad news. Of course, it is excellent news in the sense that there is NO new “uptake” and thus NO new disease on the MIBG. This means that Harrison disease is very stubborn but very very stable and again—good news in the NB world. Dr. Kushner also emailed me late last night that his Bone Marrow Biopsies are negative—again another excellent sign. Now, you are most likely thinking why are the actual blood and tissue biopsies from his marrow negative and his MIBG is positive? Excellent question, here is the armchair oncology answer—marrow is a fluid system and neuroblastoma tends to travel in clumps like grapes—sometimes you catch a clump and sometimes you don’t—pretty scientific eh? Someone once told me it’s like being at the beach and sifting sand for shells—sometimes you catch them and sometimes you don’t but it doesn’t mean that there are no shells on the beach. However, getting negative marrows time and time again means that there is not a lot of disease in the marrow and that is very good. The only tests still pending are the bone marrow aspirates (another method of looking at the marrow) and urine markers (which were at their all time low last month—WAY TO GO HARRISON). Well, that is all the medical info. Now for the plan and the talk with Dr.K—

As of today we are staying in NYC, for at least the time being with the intention of being home for Christmas. The plan is currently two-fold. The first plan is to come up with a therapy that will get us through the Holidays feeling well and keeping the disease at bay until we decided the second part of the plan, which will be to go for NED. Dr. Kushner feels because Harrison’s disease has been so stable he has many options. It is just a matter of choosing what we want to do. So we are formulating a plan now. I think that we are going to do a 5-day course of IV Irinotecan (a low dose chemo) which Dr. K thinks will continue to keep Harrison stable over the Holidays and then we will create a more formidable plan in Jan. Dr. K would like Harrison to have a wonderful holiday, especially since we were inpatient in NYC last Christmas Eve. The low dose chemo effects will be much like the Arsenic—very few side effects and he should feel just fine. After my meeting with Dr. K I feel really positive and upbeat about Harrison’s disease status and treatment options. Back in June we were under the impression that not too many options would be available after Arsenic but things have changed based on how stable Harrison has been. We are feeling very blessed and grateful that the NB has remained consistent and not progressed. We also want to thank all of you for your constant prayers, love, and light. We are humbled by our blessings and are ready for what the New Year brings us.

As for Harrison, he is TERRIFIC. He feels well, looks so handsome,a nd continues to eat well and gain weight. As I spent time with his docs, going over treatment options, discussing chemos, test results, blood counts, and making plans to save his life; Harrison was working on the really important things—like his Santa list. As I thought we were out of treatment options, I also thought Toys R US was out of toy options seeing as our house and apartment are stocked already BUT that is just not so. As we put together a formidable cancer treatment plan, Harrison has managed to put together a formidable Christmas List for Santa and was glad to let him know just how “good” he has been this year-- as you can tell from the new SANTA PHOTO. My guess is that after all he has been through this year Santa will indeed be good to him (smile).

Well, I guess that is all for now. I will update again as more news develops. Until then, we plan to make the most of our stay here in NYC at Christmas time. Sometimes in the hustle and bustle of clinic and fighting cancer we forget that we are in one of the most wonderful cities in the world and at Christmas time NYC is just magical. We hope to take advantage of that over the next 7 or 8 days and visit the Tree at Rockefeller Center, see the famous Macy’s Christmas window, perhaps a trip to FAO Schwartz to see the Christmas decorations, and then a traditional Christmas toast for Grandma and I at the Oak Room of the Plaza Hotel (SMILE). I hope you all have a great week enjoying the holiday spirit, the shopping, and the parties. Just remember to take a minute to honor God for all that you have been blessed with this year.
Love a very relieved, grateful, and honored me.

Monday, December 8, 2003 8:09 PM CST

May today there be peace within,
May you trust your highest power that you are exactly
where you are meant to be…
May you not forget the infinite possibilities that are born
of faith,
May you use those gifts that you have received, and
pass on the love that has been given to you…
May you be content knowing you are a child of God…
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.

It is there for each and every one of you…




Hello everyone: Well, Dr. Kushner emailed me a little while ago stating that his CT scan shows NO evidence of any new disease—this is good news. The MIBG is unchanged. This means that Harrison is still showing evidence of marrow disease—so basically the disease status is the same since Sept. The bone marrow biopsies and urine markers are not in yet. Of course, we were hoping for NED (which is No Evidence of Disease) but we are just not there yet. So we will continue to fight and pray and hope that we will someday achieve NED and continue to remain grateful that Harrison has no new disease, feels well, looks great, and is experiencing excellent quality of life. What does all this mean? Well, for sure it means more therapy but what I do not know. I am meeting with Dr. Kushner in the morning to discuss the next treatment plan. I will post again as soon as I know what we are doing. Thank you for continuing to check in on us and for praying for Harrison. Please continue to pray that whatever the next line of therapy is that it is the answer to a disease free life for Harrison.
Love, Gina

Special requests: Please add Harrison’s friends Jake, Christi, and Carl to you prayers this week. JAKE is really fighting for his life now and is in terrible pain; please pray for relief from the pain and strength for his parents, Chanda and Brian—we love you Jake!! CHRISTI has completed her second MIBG infusion; we are praying her white cells recover on their own without the support of stem cell rescue. And little CARL, who is just a gem, has recently relapsed 8 months post transplant. Harrison has had the pleasure of sharing a clinic room with Carl in the past and he is just as sweet as he looks. Please keep them and Harrison in your prayers as well as all the other children that need extra blessings right now.

Monday, December 8, 2003 11:27 AM CST

May today there be peace within,
May you trust your highest power that you are exactly
where you are meant to be…
May you not forget the infinite possibilities that are born
of faith,
May you use those gifts that you have received, and
pass on the love that has been given to you…
May you be content knowing you are a child of God…
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.

It is there for each and every one of you…




Hello everyone: I know you all have been checking in for the test results and I appreciate all of the notes and calls. I wish I had some news to share but because we finished so late on Friday and the snow etc… the tests have not been read yet. Dr. Kushner will email me later today so I hope to share some news this evening or first thing tomorrow. We are all on pins and needles waiting to see what our future holds—so please keep praying for Harrison. Thanks and I hope to get back with you all REEAAALLLY soon.
Love, Gina

Special requests: Please add Harrison’s friends Jake, Christi, and Carl to you prayers this week. JAKE is really fighting for his life now and is in terrible pain; please pray for relief from the pain and strength for his parents, Chanda and Brian—we love you Jake!! CHRISTI has completed her second MIBG infusion; we are praying her white cells recover on their own without the support of stem cell rescue. And little CARL, who is just a gem, has recently relapsed 8 months post transplant. Harrison has had the pleasure of sharing a clinic room with Carl in the past and he is just as sweet as he looks. Please keep them and Harrison in your prayers as well as all the other children that need extra blessings right now.

Wednesday, December 3, 2003 2:20 PM CST

May today there be peace within,
May you trust your highest power that you are exactly
where you are meant to be…
May you not forget the infinite possibilities that are born
of faith,
May you use those gifts that you have received, and
pass on the love that has been given to you…
May you be content knowing you are a child of God…
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.

It is there for each and every one of you…




Hello everyone: Well, we (Harrison, Grandma, and me) have made it back to the BIG APPLE safe and sound thanks to Corporate Angel and the host company. We had a great 10 days at home playing, spending time with family, and EATING!!! Oh my, we ate soooo much turkey and pie we are still stuffed!!!! Aunt Sheila and Uncle Brady did a great job hosting Thanksgiving Dinner—thank you for a beautiful day! Harrison has been feeling great and looks even better (check out the new pictures). He had a wonderful time home with his Dad and cousins. He did not want to leave for NYC but has settled in nicely and is enjoying revisiting all of his toys in the apartment. Tomorrow, we will head to clinic in the morning for a CT scan and bone marrow biopsies and on Friday afternoon he will have an MIBG scan. These are very BIG tests for us. What happens next will hinge on these test results. We, of course, are hoping with all of our hearts that our prayers will be answered and Harrison will have a disease free Christmas. Please keep Harrison surrounded with love, light, and prayer as we continue to travel this journey. I will post as soon as I have results—most likely on Monday (maybe Friday night if we are lucky) due to the late hour of Friday’s test. With love and gratitude for your continued support and caring for our family, Gina

Special requests: Please add Harrison’s friends Jake, Christi, and Carl to you prayers this week. JAKE is really fighting for his life now and is in terrible pain; please pray for relief from the pain and strength for his parents, Chanda and Brian—we love you Jake!! CHRISTI has completed her second MIBG infusion; we are praying her white cells recover on their own without the support of stem cell rescue. And little CARL, who is just a gem, has recently relapsed 8 months post transplant. Harrison has had the pleasure of sharing a clinic room with Carl in the past and he is just as sweet as he looks. Please keep them and Harrison in your prayers as well as all the other children that need extra blessings right now.

Thursday, November 27, 2003 9:42 AM CST

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

-Albert Einstein




Hello everyone and Happy Thanksgiving. Harrison and I are back in North Carolina after completing his 6th and final round of Arsenic Trioxide treatments in New York. He did very well with the last round of therapy and his time in NYC but, of course, he is glad to be home reunited with his Dad.

While Harrison has been busy playing with his Dad and his cousins Sheila, Erin, and I have been busy planning Thanksgiving dinner. This is my favorite time of year and perhaps my all time favorite week of the year. Because it is Mike’s birthday, my birthday, and my sister’s birthday as well as Thanksgiving, our family celebrates for an entire week! As I remember the years past it always stands out as the one time during the year when I have always made a conscious effort to reflect and give thanks for the previous year’s blessings. This year, however, seems different. I think because I have spent so much time past this year giving thanks everyday for Harrison’s life that it feels less weighted and so much more peaceful this year; it’s a calmer more loving, more authentic, deeper, and truer sense of gratitude than I have known before.

As I was “feeling” how this year was different I was thinking about how I would share my thoughts, of gratitude on Thanksgiving Day. I thought I would share with you all what I plan to share with my family as we gather on Thursday to celebrate, rejoice, and give thanks for all we have been given:

“As I was thinking how best to express my feelings of gratitude this year I started to reminisce about the previous year. What surprised me the most was that my first feelings were those of pride. The pride I felt for how my family, especially Harrison, has embraced the events of the last year and a half. Instead of asking ‘why us?’ we asked ‘why not us?’ Why not our family; a family who’s built on love and strength; a family’s whose foundation only sustained small cracks during the emotional and physical earthquake of this past year. Who better than us to be taught the invaluable gift of always finding the blessing among the tragedy? Why would we not be chosen to experience the contrast that allows us to know how blessed we are. How would we know hope without despair, joy without sadness, gratitude without misfortune, peace without anger, and grace without chaos? Sometimes we grow weary from the challenges of our lives but how wonderful that we are together loving and helping each other through them. Today is a day that we turn our hearts from receiving to giving—honoring God and our Spirit’s for all we have been truly blessed with, on this Thanksgiving Day. We are exactly where we should be—let us gives thanks for the ‘place that God circled on the map for us’.”

Our family hopes you and yours have a peaceful and joyful Thanksgiving Day

Love,
Gina

Thursday, November 13, 2003 6:21 PM CST

Don’t look for miracles. You yourself are the miracle.
Henry Miller



Hello everyone: Sorry for the delay in updating to let you know that we made it safely back to the “Big Apple,” thanks to Corporate Angel and the host company. Grandma and Grandpa were awaiting our arrival at the airport and all went smoothly [thanks Mom and Dad for continuing to travel for Harrison’s treatments]. I have a wonderful story to share with you all tonight. It is one about hope and miracles. Brandon, a young toddler from Atlanta with Neuroblastoma, was “himself a miracle” this week. Kristin, Brandon’s Mom, who I know from a Neuroblastoma parent support group, emailed us all this week to tell us that when the family flew to California a few days ago for scans in preparation for Brandon’s paraspinal surgery the tumor was GONE!! Yes, you read correctly. A previously large visible spinal tumor ready for resection had disappeared. Brandon was a MIRACLE. This story gives so many of us hope and faith that there is a cure beyond the walls of western medicine. We are so thrilled for Brandon and his family; he is disease free for the first time in 2 years. Brandon’s story is reason enough to keep hoping, praying, and fighting everyday.

With my heart still warm from news of Brandon’s miracle I remain even more grateful for Harrison’s good days. Treatment began on schedule Monday morning and all is progressing well. Harrison has grown almost 2 inches since his last height measurement a few months ago and has gained another pound!!! WAY TO GO HARRISON! He does, however, seem a little more whipped from this round of treatment but that’s ok we are just resting more. NYC is its usual bustling self only a little more so with the holidays around the corner. I always find the city such an exciting and festive place to be during the holidays and can’t wait to see the tree in Rockefeller Center. But thankfully, other than the pulse of NYC, there is not too much exciting news to report on the clinic front. As for what is next; well, we finish this round of Arsenic Trioxide on Nov. 21st and head back to North Carolina for the Thanksgiving holiday. Then the first week in Dec. we will return to NYC for scans, tests, and biopsies. And after that we will make a plan based on Harrison’s disease status; which, of course, we always hope is none. So as you say your prayers this Thanksgiving holiday please include Harrison and perhaps for Christmas this year we will be, by medical standards, disease free. Thank you for checking in and for your continued thoughts and prayers for Harrison.
With love and hope, Gina

Friday, November 7, 2003 9:05 PM CST

The place you are right now
God circled on a map for you.
Ibraham Hafiz


Good evening everyone: Sorry it has been so long since my last update but we have been really enjoying a bit of “normal” time at home and it was a little hard to write updates about normal things especially after the journal about Michael D.’s death.

Harrison has been doing just GREAT! He has been playing, eating, and having FUN FUN FUN since we have been home. Halloween was a blast and we are still eating all the goodies that “Batman” collected.

Today we had a play date with Jake and Chanda. That little guy is just too cute for words. Jake is doing great and both boys enjoyed the park and the warm sunny weather. Thanks Jake and Chanda for a day filled with love and laughter.

We head back to NYC on Sunday, thanks to a Corporate Angle flight and will begin our final round of Arsenic Trioxide (round 6) on Monday—time has really flown by with this treatment. I can only hope whatever is next provides the same excellent quality of life that Harrison has enjoyed these last few months.

Well, that’s all for now and I will update again, from the “Big Apple,” in a few days after we get settled and back in the swing of treatment. As always thanks for checking in on Harrison and for all the prayers for both Harrison and his friends who continue to fight for their lives. With love and gratitude, Gina

Special notes: HOORAY for Michael R. and his CLEAN scans this month—way to go Michael R. and we are asking for special prayers for Harrison’s friend Christi who is one of 5 children to enroll in the phase I MIBG double dose trial at CHOP (Children’s Hospital of Philadelphia). Christi, like Harrison, has persistent bone marrow disease. The decision on the part of Angela and Shayne to do this treatment was both a brave and loving decision. Our hearts and prayers are with you Thomas Team! Go Christi Go!

Wednesday, October 29, 2003 3:52 PM CDT

Friend you lie quiet,
watching the dawn light color you heart,
dreaming of healing for your hurt body
laying there unanswerable to your will.
You breathe deep and your breath has two sides:
inside and outside. You are on both, being breathed.
The future approaches. You will heal or
you will go back to being God.
Which will you do?

Oh by all that is beautiful—
May it be that you live!
May your body heal happy and whole!
May energy fill and delight you!
May we join in the dance your presence gives!
May you live!

And if you die?
Oh dear self, by all that is beautiful,
Know you are Safe! Everything is All Right
Forever and Ever and Ever!
The most wonderful, exquisite, familiar
Truth is what is True, and welcomes you.
It will be very easy.

You will lie quiet now, praying.
A great healing is coming
And you want to be ready.
The colors of your heart blend
with the light of morning.
You are blessed.
—Elias Amidon




Harrison and I have made it safely back to NC and are grateful to be enjoying our time at home. The last week we were in NYC was very difficult and filled with sadness. I attended Michael’s evening services on Wednesday and the beautiful mass that was held for him in Queens, NY on Friday. As I was leaving clinic that morning, for the ride across the bridge to Queens, so many people stopped me and told me how great it was that I was going to the funeral and how brave I was for doing it. I was not brave I was terrified. Michael and Harrison were diagnosed only weeks apart (Harrison first) my mind was racing and my heart strained with grief and gratitude all in the same beat; Michael was gone and Harrison was alive. I was not strong I was hopeful that I my spirit would allow me enough strength to make the drive. It was one of the saddest and most difficult days of my life and I could not even believe I was there. I went not to be noble or impressive but simply to honor the spirit of one of Harrison’s best friends and to let my friend Anne know how much I love and care for her and Michael. I think of them both everyday and at times, in moments when my clarity is clouded, I am angry that Michael died and that Anne must live without him. And then I read a poem, like the one above, and I am relieved and filled with a quiet calmness that he no longer has to suffer and that “the colors of your [his] heart blend with the light of the morning.”

Michael’s death has been devastating for all those who knew and loved him. It makes me want to hang on to Harrison and never let go. At night I find myself unable to sleep just staring at him praying, begging for his life. This experience has been unbelievable in so many ways. Harrison and the other parents and children I have had the privilege to meet along the way have given me many gifts. But thanks to my child perhaps one of the greatest truths I have come to realize is this:

As a spiritual traveler I continue to try and accept life as it comes to me. I find it much more difficult and painful to harbor anger and fear than to embrace the idea that life will come to pass even in the face of my anger. Therefore I challenge myself to live more with love than with fear; it makes the road far more manageable for my little spiritual traveler and me.

I hope I have honored Michael and Anne; this entry is for them.
Love,
Gina

Sunday, October 5, 2003 12:54 AM CDT

May the roots of suffering diminish. May warfare, violence, neglect,
indifference, and addictions also decrease.

May the wisdom and compassion of all beings increase, now and in the future.

May we clearly see all the barriers we erect between ourselves and others to be as insubstantial as our dreams.

May we appreciate the great perfection of all phenomena.

May we continue to open our hearts and minds, in order to work ceaselessly for the benefit of all beings.

May we go to the places that scare us.

May we lead the life of a warrior.

Pema Chodron


Hello from NYC: The above quote is from a book I am reading called The Places That Scare You written by a Buddhist nun. She, through the basic principals of Buddhism, teaches that beyond our fear lies a state of openheartedness and tenderness and how to awaken our basic goodness and connect with others, to accept ourselves and others complete with faults and imperfections, and to stay in the present moment by seeing through the strategies of ego that cause us to resist life as it is. It is an amazing book and has helped me touch and really the feel “the places that scare me.” Such places, we as parents are faced with everyday especially when it comes to our children. One of my biggest fears, of course, is experiencing the loss of my child. Harrison, in the present moment is doing great and continues to do better everyday. However, our daily trips to clinic are a painful reminder of my fears as there are always children struggling with survival. To really stay focused in the present moment allows the highest perspective for gratitude in such a fearful space. These are the things I strive to practice as Harrison and I navigate this, often, surreal journey.

We have found NYC well otherwise. It has been nice to see our friends in clinic and we have enjoyed some excellent time with Jake and Chanda as the boys have had the privilege of sharing a room for treatment this week. Jake is in NYC doing tests and low dose chemo. The boys also enjoyed a trip to Toys ‘R’ Us and baking cookies at the apartment. It was nice to give them a bit of normalcy amongst the treatment week. Please keep Jake in your prayers as he continues to fight.

Harrison continues to do well with the Arsenic treatments. His doctors in general seem please by just looking at him. Of course, what’s not to love? He is feeling well, eating, playing, and continues to gain weight. I can only hope these are all signs that this treatment is continuing to work and the cancer is slowing dying.

The “Lunch for Life” campaign continues to go well and we would like to thank everyone who has so generously donated to this terrific cause. We were actually interviewed by the Lake Norman Times and appeared on the front page of Wednesday’s paper.

This weekend we will be heading to our cousins house for more Pumpkin Patch Picking followed by Pumpkin painting, so look forward to more pictures. I hope you all have a great weekend and please continue to pray for Harrison and his friends especially Michael D. who is having a difficult time. He and his Mom, Anne are special friends of ours and can use some prayers for strength, comfort, and peace. Thank you for checking in and I will post again after the weekend.
With love and gratitude, Gina

Tuesday, September 30, 2003 2:56 PM CDT

What Cancer Cannot Do

Cancer is so limited…
It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal eternal Life
It cannot conquer the Spirit.

Author Unknown


Hello everyone: Well, we have made it back to NC and we are doing fine. The flight was great. Corporate Angel asks that we keep the name of the company confidential so I will just say a BIG thanks to the wonderful company that flew Harrison and I home—you all were terrific and Harrison really enjoyed the flight, especially the tour of the cockpit and the goodie bag.

Aunt Sheila took great care of Daddy while we were gone and he and Brady are both doing well. Brady is back almost full time in his office at the house and Mike is going into his office at least half days for now. Both men are doing regular physical therapy and improving daily.

Harrison is doing fine too. He flew through the last round of Arsenic with no problems and has even gained weight. We are up to a hardy 40 lbs—when he was diagnosed 16 months ago he was a slight 28½ lbs. He has been having a ball here at home playing with his cousins and friends non-stop. He is so thrilled to be home and it shows. He is just radiant and full of life—it is wonderful to see him doing so well and we are cherishing every moment. I am so proud of him.

We will return to NYC for the 5th cycle of Arsenic Trioxide the week of Oct. 13th but will return home to NC in time for Halloween. Harrison still cannot decide between the red “Power Ranger” and “Batman.” I am glad these are currently the toughest decisions he has to make [smile]. We plan on doing some pumpkin picking in the next few days so check in again over the weekend for new pictures. I just love this beautiful fall weather and can wait for Halloween and Thanksgiving to arrive!!!

Thank you all for your continued thoughts and prayers for our family. Everyone is coming along nicely, especially Harrison and for this we are most grateful.

Love, Gina

Sunday, September 21, 2003 6:02 PM CDT

Good Sunday evening everyone:
I hope everyone had a good weekend. Our week and weekend went well. Harrison did fine with the first week of treatment and has not experienced any side effects (thankfully). On Sat. Harrison was invited to his friend Anthony’s birthday, a bowling party, and had a great time [see pictures]. Anthony’s older brother, Michael R., is also in treatment at Sloan and doing great. Anthony and Harrison have become great friends over the course of the last few months while Anthony accompanied his brother to clinic, you can visit his web site at www.caringbridge.org/page/friendsformichael.

Today we have spent being what Harrison respectfully calls “lounge lizards” we have not gotten out of our PJs all day (except to dress up as a “Fireman” and “Batman”). We have snuggled, played computer games, napped, and watched movies—it has been the perfect day. We have one more week of treatment to go before getting the next 2 weeks off. We plan to head back to NC for the break and enjoy being “normal” for a while. We are fortunate that Harrison continues to do well and we are asking that our friends and family focus their prayers on Harrison’s friend Michael D. (5 y.o.). Michael and Harrison were diagnosed within 4 weeks of each other and have been battling this disease side by side for over a year now. Harrison is very fond of Michael D and I of his Mom, Anne. They were not given such good news on Friday, as his disease continues to progress. Please pray for Michael, he and his family are in need of a miracle and I for one believe in miracles. Michael D. does not have a web site so I will keep you all posted on him. Thank you for continuing to remember Harrison and all his friends in your prayers. Love, Gina

Wednesday, September 17, 2003 4:33 PM CDT

A moment’s insight
is sometimes worth
a life’s experience.

Oliver Wendell Holmes


Hello everyone: Well, we have settled into our NYC rhythm rather nicely and Harrison has not missed a beat. Treatment started on Monday and he has been doing just fine. It is amazing how many people have told me how great Harrison looks and some have even asked if we are in remission. Well, we are not in remission but we cannot complain about how things are going either. Harrison is feeling very well and we are just thrilled that it seems that the remaining cancer is being chipped away a little at a time.

After receiving all the test results I found myself reminiscing about the last year and half evoking a waterfall of emotions, the likes of which ranged from “thinking” about the days and weeks surrounding diagnosis, its gravity, its weight, and its devastating impact on what you had come to define as your life. And then those thoughts turned to “astonishment” pondering questions like, how did we get this far? Followed by more “thoughts” like, thank God we did get this far. But it seems that all of those thoughts ended with the simplest of emotions—one from the heart—the feeling of “gratitude.” It’s funny how your spirit and God can bring you to a place in your heart where you can find gratitude amid so much misfortune. Today I think I stumbled into one of God’s subtle reminders of how to find the blessings. In clinic this week we have shared a room with a new family; their 3 y.o. has recently been diagnosed with Neuroblastoma and this was their 5th day at Sloan. And as I heard them ask their nurse questions to become educated on how to care for their child it occurred to me how grateful I really am for what I know, what I don’t know, what I have experienced, what Harrison has taught me, and that which Harrison continues to teach me; and then I realized for the first time since our journey began, that I still remember May 15, 2002 like it was yesterday but I am not so afraid of that day and what it means anymore. I imagine that if Harrison’s health was not as good as it is today I might not feel this way but your feelings are based on experience and since this is the only experience I know well these too are the only feelings I know. I hope that regardless of what the future holds I can always touch that place in my heart that allows me to remember how I feel today. Thank you for checking in and for letting me share a piece of my journey today. Love, Gina

Saturday, September 13, 2003 8:48 AM CDT

Learn to wish that everything should come to pass exactly as it does.
Epictetius



Hello everyone: I am sorry it has been so long since I have updated but we have been so busy here and honestly I am just exhausted. Mike and Brady are out of the hospital and are staying at Sheila’s house, as Harrison, Grandma, and I have to head back to NYC on Sunday. Sheila, Mom, and I have been working to get everything organized before I leave, keeping 15-20 hour days. Both men are in wheelchairs but doing well. Mom has been a fulltime SUPER GRANDMA and keeping Harrison round the clock, running errands, cooking meals, and basically keeping life organized while Sheila and I shuttled back and forth to two hospitals and got the house ready. So needless to say, the whole lot of us are tired; NYC is going to be almost like a vacation from the chaos of the last 2 weeks. I cannot thank my Mom enough for everything she has done this week—there is no way Sheila and I could have done this without her. And I must thank my Dad too; he has handled the insurance nightmares and all of the official business that ensues with an accident. On a brighter note, Logan (my 3 y.o. nephew) started preschool this week and is doing great—this is a big stress reliever for Sheila during this difficult time!

Harrison is doing well. He looks and feels great and is actually enjoying his time home (thanks to Mom) despite all of this. All four of his bone marrow aspirates were negative but there showed a “tiny focus” of Neuroblastoma in the left biopsy. They actually had to do a special test to find it—the docs are however encouraged by the improved MIBG and the plan is to continue with cycle 4 of Arsenic Trioxide on Monday.

We, as a family, are still shaken by the events of the last 2 weeks but we are a close family who has endured crisis before and we will make it through all of this too. As challenges continue to come our way we continue to face them together with strength, courage, determination, and absolute certainty that we will ultimately be triumphant. We wanted to thank all of you who have called, offered help, and left words of kindness and encouragement in the guest book. We are so appreciative for our friends; and a special thanks to all of my girlfriends who are bring meals to Sheila’s next week [Kim you are a life-safer by organizing that for me]—I am so grateful to have your help while I am gone. However hidden blessings sometimes seem they, with time, make their presence known.

I will update again after we get to NYC and get settled.

Requests for prayers: Several of Harrison’s friends are really struggling right now. Please say an extra prayer for little Robyn, who has moved to NYC with her family from England for treatment and who has recently relapsed; for Jess who has relapsed with Ewings Sarcoma; for Morgan who has been having fevers; for Michael who heads to Texas for his next vaccine injection; and for little Julia who is struggling with a tough chemo recovery. Thank you for including these wonderful children in your prayers.

Grateful to have come this far, Gina

Saturday, September 6, 2003 3:45 PM CDT

Story of the 4 Candles
The Four Candles

Author Unknown

The Four Candles burned slowly.
Their Ambiance was so soft you could hear them speak.
The first candle said, "I Am Peace, but these days, nobody wants to keep me lit."

Then Peace's flame slowly diminishes and goes out completely.
The second candle says, "I Am Faith, but these days, I am no longer indispensable."

Then Faith's flame slowly diminishes and goes out completely.
Sadly the third candle spoke, "I Am Love and I haven't the strength to stay lit any longer."

"People put me aside and don't understand my importance. They even forget to love those who are nearest to them."
And waiting no longer, Love goes out completely.

Suddenly
A child enters the room and sees the three candles no longer burning.
The child begins to cry, "Why are you not burning? You are supposed to stay lit until the end."

Then the Fourth Candle spoke gently to the little boy, "Don't be afraid, for I Am Hope, and while I still burn, we can re-light the other candles."
With Shining eyes the child took the Candle of Hope and lit the other three candles.

Never let the Flame of Hope go out of your life.
With Hope, no matter how bad things look and are...Peace, Faith and Love can Shine Brightly in our lives.



Saturday evening 8:00pm

Just a quick update to let you know that after further scans, tests, and blood draws they have found a blood clot in Mike’s left lung. They are taking many precautions and treating the condition. The docs think no further damage will result from the clot and that with the right medications it will dissolve itself. Thanks for checking in.
Love, Gina



Saturday 5:00pm

Hello everyone: This afternoon, I write to you with some good news. Harrison’s MIBG scan showed some slight improvement and otherwise stable disease. In the world of Neuroblastoma this is indeed excellent news. So, with the results that are in so far (marrows still pending) the team would like to continue with the Arsenic Trioxide treatments and re-evaluate Harrison in November. His docs are quite pleased with how things are going and we are so grateful that Harrison is holding steady and in some areas improving [no evidence of disease in his left orbit area]. He is feeling great and so happy to be home enjoying his playroom. We will head back to NYC in time for the next round of treatment on Monday, Sept. 15th. It is likely that my Dad will stay behind in Charlotte to help Sheila who will have both Mike and Brady until I return again.

As for Mike and Brady: Mike gave us a bit of a scare yesterday with a racing plus, a fever, and high blood pressure so they moved him to a step-down unit where they could put him on a monitor and run some tests to rule out a pulmonary embolism. I am happy to report that he is fine. They are going to monitor him again overnight and see if the fever returns. He vitals are much more stable today and we hope to be transferred back to the orthopedic floor soon.
Brady is hanging in there in Missouri. Sheila is still with him but she returns tomorrow and Brady will be transferred on Monday. So everyone seems to be doing fine. For the first time in a while I am thrilled to say that Harrison is in better shape than anyone!!! We, as a family, are doing our best to focus on the positives and to find the blessings even when they seem hidden. Of course, the news about Harrison makes it easy to be grateful even in the face of the accident crisis. Mike and Brady are going to be ok and so is Harrison. Thank you to everyone who has stopped by the guest book or has called to offer their prayers. I will update again when anything changes but for now Harrison just plans on enjoying his off week (my parents are doing their best to keep him distracted and having fun after all this is supposed to be his good week—thanks Mom and Dad—and I am hanging out at the hospital with Mike. I hope everyone has a nice weekend. With love and gratitude, Gina

Thursday, September 4, 2003 9:17 PM CDT



Good evening everyone: Before I give you a brief update on the men in my life I wanted to say “thank you” for all of the wonderful words of encouragement and prayers you have all left in the guest book. The support and love my family and I feel is overwhelming. We are blessed to have so many friends and family in our corner.

Mike had surgery this afternoon on his right leg. The damage was more extensive than they had originally thought but all went well. They repaired ligaments and relived some pressure in the knee due to a build up of blood from the torn ligaments and tendons. Unfortunately, the tendons were not repaired due to the stress already on the knee from the other tares but this can be handled at a later date. Mike is in a fair amount of pain but I was able to speak with him this evening—I am grateful that my Dad is with him. I am hoping that he rests comfortably tonight and I can’t wait to see him tomorrow. Brady, too, is in a considerable amount of pain but is otherwise doing ok. He will not be moved to NC until Monday due to pain management; Sheila will stay with him until the move.

Now for my “little man” update: Harrison did well during all of his tests yesterday and today. The results are in for the CT scan and everything is stable. This means that there is NO new disease and the lymph nodes are a normal size—thank you God! The MIBG results will be available in the morning and I will do my best to update before we depart for the airport. The bone marrows will be back sometime next week. Please pray for a speedy recovery and complete healing for Mike and Brady and that we continue to receive good news, for Harrison, with the additional test results. With love and gratitude, Gina

Wednesday, September 3, 2003 10:26 PM CDT

I learn by going where I have to go
Theodore Roethke



Hello everyone: Sorry it has taken me so long to update everyone on what is happening but I have been very busy over the last 4 days. My heart is filled with relief and gratitude as I tell you that Mike and Brady (my brother-in-law) are going to be fine. The accident was indeed a terrible one but they are alive and will be well soon. Let me recap what happened; I will spare you all the not so pleasant details of the accident. Sheila (my sister-in-law) and I flew to Missouri first thing on Sunday morning. Brady’s surgery, on both of his legs went well but due to the extensive nature of the damage they were unable to finish and had to do another surgery, again on both legs today; that, too, went well. Mike does need surgery but did not get it because he needs an orthopedic surgeon who specializes in sports medicine due to a fractured bone near his kneecap and torn ligaments in his leg and the hospital in Missouri had no such specialist. Mike was flown to Presbyterian Hosp. in Charlotte today via a medical plane and is tentatively scheduled for surgery tomorrow. Brady is still in Missouri recovering and we hope he, too, will be transported to Charlotte by Friday. I stayed in Missouri until last night but had to come back to NYC for Harrison’s tests today and tomorrow. Sheila has remained in Missouri to get Mike on his way and of course to stay with Brady. My Dad flew from NYC to Charlotte this morning to meet Mike at the hospital. My Mom is flying to Charlotte tomorrow and Harrison and I will follow on Friday after his final test (Harrison has next week off from treatment—thankfully). My plan is to have Harrison’s next treatment (whatever that may be) organized by the time I leave here on Friday so that I can concentrate on Mike. From what we currently understand Mike will need several weeks to heal and Brady perhaps several months. If you ask either of them they both plan to be ahead of the predicted recovery schedule and they are both in good spirits. Sheila and I are so grateful they have sustained injuries that are repairable. As for Harrison, he seems to be doing great. He stayed in Boston with my parents and Aunt and Uncle for the weekend and had a ball at the Zoo, Aquarium, many dinners out, and of course a shopping spree at Toys ‘R’ Us. I am forever grateful to my family for the unfailing love and support they continue to shower on me. My Mom and Dad have been my rocks—thank you Mom and Dad and a thank you to my sister Erin and her husband who have kept my nephew so that Sheila could be with Brady. Everyone always wonders how I have gotten through the last 16 months—MY FAMILY, that’s how. Well, I guess that is all for now, but I imagine that is enough! I will be sure to update again to let everyone know how not only Harrison does with all the tests but how Mike and Brady are doing as well. It is now that I humbly ask for your prayers for not only my son but for my husband and my brother-in-law. This is an unparalleled time for family as we hope for news of Harrison’s wellness and shepard Mike and Brady towards healing. What is so amazing about all of this is although the events of our lives over the last year and a half seem so unfortunate when you are outside looking in but if you are on the inside looking out we have much to be grateful for— the privilege of raising and loving one of the most amazing children I have ever met and for his current excellent quality of life, Mike and Brady are alive, and for my wonderful family whose love overwhelms me everyday. Eternally grateful for all that I have been given, Gina

Saturday, August 30, 2003 8:33 PM CDT

Good evening everyone: It is with a heavy heart that I write to you all this evening. Harrison is fine, however, Mike and my brother-in-law, Mike Brady, have been in a very serious automobile accident in Missouri today. They were pulling our boat to meet its new owner when the rainy weather caused the truck to spin out of control and crash head-on into a tree. Mike has a broken leg and some other cuts and scrapes, they are evaluating him for any head injuries. My brother-in-law was not as lucky and had emergency surgery on both of his legs but has no other internal injuries that we know of at this time. My sister-in-law, Sheila, and I are flying out there at 6:oo am tomorrow morning—I am flying from Boston and she from Charlotte. Please pray for both of them that there are no additional surprise injuries and that they both will recover fully. Harrison will be staying the weekend in Boston with my parents and my Aunt and Uncle; they will carry on with a fun weekend for Harrison’s sake. Thank you for your thoughts and prayers and I will update again after we arrive in Missouri and I have more information. Gina

Thursday, August 28, 2003 4:59 PM CDT

Picture: This is Harrison with his favorite nurse, Maureen, who takes excellent care of Harrison everyday in clinic. Thanks Maureen for all you do; we love you!


Hello everyone: Well, the week is almost over and I wanted to give you all a quick update because tomorrow after clinic we are headed straight to Boston for the Holiday weekend. My Aunt and Uncle live there and we are going for a long weekend visit. We are all really looking forward to the trip so I will not update again until our return on Tuesday. Harrison has done great with the treatment this week and is feeling fine. All of his tests have been scheduled for next week. On Wed. he will have a CT scan and Bone Marrow Biopsies and on Thurs. he will have his MIBG scan. So the plan is to have a great weekend, prepare for test week, and make a plan based on the results. Have a great weekend and I will update on Tuesday, I am sure with new pictures! Love, Gina

Sunday, August 24, 2003 8:05 PM CDT

I can feel guilty about the past,
Apprehensive about the future,
But only in the present can I act.
The ability to be in the present moment is a major component
of mental wellness.

Abraham Maslow




You’ve heard of “James and the Giant Peach” well this is Harrison and the Giant Orange Bowling Ball. I promised you bowling pictures—better late than never!!!

Good Sunday afternoon everyone: All is well here in NYC. Harrison has done great with the first week of cycle three. He does not even look like he is getting anti-cancer therapy. I hope this is a sign that the cancer is finally departing our lives for good. Despite my hopes for the future we are really trying to live present moment and truly experience everything that is happening to us right now; and being grateful for his excellent quality of life in this very moment is one of the things that we are most grateful for. We have been letting Harrison set the pace for our activities and as a result we have had a really excellent week, even with 7-hour clinic days. Sunday, Monday, and Tuesday he and I spent having some wonderful one on one time getting the apartment organized after our 2-week break. On Tuesday Harrison’s good friend Anthony was in clinic and the boys had a grand time in the play room and created their own impromptu pizza party as Harrison waited for his daily treatments to begin and I was able to spend some quality time with Anthony’s mom and my dear friend Sharon. On Wed. we went to Kristine and Pat’s for dinner [Kris is one of my best friends from childhood] after a quick pit stop at Toys ‘R’ US for being such a good boy all week for mommy—thank you Kris and Pat for a great dinner and some much needed evening company. On Thursday, Grandma and Grandpa arrived from North Carolina and on Friday Mike came for the weekend. Yesterday we went into the city and spent the afternoon at the American Museum of Natural History and saw some really incredible exhibits, “Ocean Life” and “North American Mammals” [see new pics]. Today we are off to a Christening of a family friend’s baby and tomorrow Harrison begins his second week of treatment. So the plan, for today is to enjoy “today” and each moment and to be grateful for these very good, very happy days, and worry about tomorrow only when I have to. Enjoy each of your days and thank you for checking in our son, our hero. Love, Gina

Tuesday, August 19, 2003 3:52 PM CDT

There are moments when wellness escapes us,
moments when pain and suffering
are not dim possibilities
but all to agonizing realities.
At such moments we must open ourselves to healing.

Much we can do for ourselves;
and what we can do
we must do—
healing,
no less than illness,
is participatory.

But even when we do all we can do
there is,
often,
still much left to be done.
And so we turn as well to our healers
seeking their skill to aid in our struggle for wellness.

But even when they do all they can do
there is,
often,
still much left to be done.
And so we turn to Life,
to the vast Power of Being that animates the universe
as the ocean animates the wave,
seeking to let go of that which blocks our healing.

May those
whose lives are gripped in the palm of suffering
open
even now
to the Wonder of Life.
May they let go of the hurt
and Meet the True Self beyond pain,
the Uncarved Block
that is our joyous Unity with Holiness.

May they discover through pain and torment
the strength to love with grace and humor.
May they discover through doubt and anguish
the strength to love with dignity and holiness.
May they discover through suffering and fear
the strength to move toward healing.
—Rabbi Rami M. Shapiro


Hello everyone: Harrison and I made it safely to NYC and to the apartment on Sunday afternoon. We were originally scheduled to depart on Friday morning but, of course, due to the power outage we left on Sunday. That worked out great because we were able to spend some unexpected time with Mike and the rest of the family and really enjoyed the last 48 hours home. Many of our friends were in NYC during the power loss but everyone seemed to have done well and things were in full swing at clinic on Monday. We are grateful to be back in clinic resuming our treatment schedule, always praying that we are moving one step closer to healing. Yesterday went well and Harrison did great on his first day, of cycle three of Arsenic. Many of our friends are in clinic this week right along next to us for treatment so in an odd way it was like coming home; it is a different home with a different family but one we have come to love and feel grateful to be a part of. It always amazes me what strength, love, and faith so many of the parents, who are now some of my closest friends show during these very uncertain and difficult times; times filled with fear and suffering. One of the things I love about the quote above is that it recognizes the strength of both “healers” and “faith” which comes from the Universe, God, and ones highest sense of Self. On this journey one of the most important things I think I have come to learn is that you can reconcile the choice to do everything medically possible to challenge sickness and still maintain an absolute faith in a divine power. We turn over the physical healing to others but we must each do our own healing and teach our children to touch that inner part of themselves in order to feel “healed, safe, and loved.” I have come to realize that it is not a test of faith but more of an education in what it really feels like to experience “truth.” I think part of the reason our children are so strong is because so many “cancer” parents do such a good job exhibiting an excellent balance between faith and medicine; clinic and the park; in-patients stays and a weekend away for fun and always creating a space in which our children feel safe. It is really a matter of balance and peace. I think Harrison was so well prepared to return because of a wonderful two week break with his family doing “normal” things and having fun; and because I was recharged and really not dreading our return. We both have done great and are ready for the weeks ahead. For the next two weeks Harrison will receive Arsenic Trioxide and then during the next two- week break we will have a full set of tests to determine the “state” of the disease. Everyone around here cannot believe how GREAT he looks; we are praying his test results reveal what we have known all along—that we are going to have a cancer free future. Thank you all for checking in and for the great words of love and encouragement and most of all for sharing our journey. With love and gratitude, Gina



Thursday, August 14, 2003 10:40 AM CDT

"Celebrate! Celebrate life! Celebrate Self! Celebrate
the predictions! Celebrate God!
Celebrate! Play the game.
Bring joy to the moment, whatever the moment seems to
bring, because joy is Who You Are, and Who You Will
Always Be.
God cannot create anything imperfect. If you think
that God can create anything imperfect, then you know
nothing of God.
So celebrate. Celebrate the perfection! Smile and
celebrate and see only the perfection, and that which
others call the imperfection will not touch you in any
way which is imperfect for you."

"Face the future fearlessly, understanding The Process
and seeing the perfection of all of it.
That peace, that serenity, that calmness will lead you
away from most of the experiences and outcomes others
would have called "negative.""

"Stay calm, stay peaceful, stay serene, in the face of
these dire predictions of planet-wide calamity, and
you will have the best outcome possible."



Well, let me start by saying that over the course of the last 3 days I have read and re-read this passage to try and keep both my sanity and sense of serenity and it was nearly impossible until this morning. This sudden near loss of control was due to our unexpected inpatient stay at Carolina’s Medical Center (our hospital in NC). Just when we were doing such a good job pretending things were “normal” and having such a good time at home things took a turn, but not too far around the bend Harrison made a nice recovery in the end. On Tuesday afternoon, after a full morning of bowling (will post pictures of Harrison and the giant orange bowling ball soon) and lunch at the park with his cousins and friends Harrison developed a fever (102.8) under the arm—YIKES!!! So off we went to check in at CMC. When we got there his fever had gone but we stayed anyway and thankfully so because it returned at midnight that evening but not since. The cultures of his central line are negative and he seems to have no other symptoms—so after 2 nights and 2 days at CMC we were released this morning and things seem to be fine. This is all just in time for me to pack for our NYC trip—our plane leaves at 7:30 am tomorrow—another YIKES—less than 24 hrs to “pull it together” for the next 3-4 weeks!!! Thanks to Mike, Aunt Sheila, and Auntie Erin I was able to jet home last night for the evening and start the packing for the trip. Well, have to run—much to do for tomorrow—thanks for checking in and despite the surprise detour Harrison seems to be doing great and we are most grateful that is seems to have been just a fluky thing and not something far more serious. I’ll update when we hit the BIG APPLE. Love, Gina

Monday, August 11, 2003 11:01 AM CDT

Out of intense complexities intense simplicities emerge.
Winston Churchill


Hello everyone: WOW is this quote true, especially for us this week. It is amazing how easily Harrison has fit right back into his “normal” life here in NC enjoying the “simplicities” of life that most kids take for granted (swimming, the park, and playing ball). We have really been having a great time home. We have been swimming (as you can see from the new pics), spending time with family and I have even enjoyed a few “girls” nights out to dinner. It’s funny how complex life is in NYC constantly battling Harrison’s disease but here at home you can almost for a minute forget that we are a “cancer” family and just “be” normal for a while. Everyone has commented on how great he looks and I can’t agree more but it is so hard for me to let my guard down because neuroblastoma is so sneaky. As always I pray that Harrison’s insides look as great as his outsides. We are headed back to NYC later this week and we begin his next round of Arsenic Trioxide one week from today; having two weeks off has been great but it sure has gone by in a flash. Thank you to everyone who has made this such a nice trip home; it has really re-charged my battery and I am ready to face the next few weeks. I will hopefully update one more time before we leave for the Big Apple. Thank you and keep those prayers coming our way. Love, Gina

Sunday, August 3, 2003 8:59 PM CDT

There’s no place like home…there’s no place like home…there’s no place like home.
-Dorothy from “The Wizard of Oz”


Now if I just had a pair of those ruby slippers and maybe some help from the Wizard… Hello everyone and in the immortal words of Dorothy, “there is no place like home.” And home we are!!!! We arrived safely back in NC about 11:00 pm Friday evening after driving straight through after Harrison’s last round of Arsenic Trioxide Friday morning. Thank you Mom and Dad for driving and for seeing Harrison and I safely back home and thank you to all of you who continue to show so much love and support to our family. Your words of encouragement and hope give us so much strength as we support and brace Harrison during this fight for his life.

Well, since we have been home we have had a great 2 days. Harrison was so thrilled to be home in his own playroom with his Dad that they stayed up until 1:00 am playing only to get up six hours later and start again on Sat. morning. Mike has been with Harrison non-stop since we got home. We have had 2 great family dinners and I spent today at the pool enjoying my niece and nephew and a few yummy frozen drinks [smile]. Tonight Harrison decided he wanted to sleep at his cousin’s house so off he went with Aunt Sheila, Uncle Brady, Logan, and Colby for a sleepover!!! We are grateful to be home and for the 2-week brake. Harrison looks and feels great and seems to be having a ball and I am just thrilled that he gets to be a “normal” kid for a while even if it’s just for 2 weeks. I am sure I will update again soon with some new “summer fun” pictures. Have a great week!!! With love and gratitude, Gina

Please continue to keep Harrison and all his friends in your thoughts and prayers.

Harrison’s friends:
Jake: is beginning another round of antibodies Monday. Please pray that his pain and the side effects are easier on Jake this time around.
Bryce: begins radiation on Wed. Please pray that all goes well with this new treatment for Bryce
Michael R: all Michael’s scans showed NED (no evidence of disease) Way to go Michael!!! He is currently in Texas as part of a phase I trial for a new vaccine for NB kids. Please pray all goes well with this new trial.
Morgan: has completed her 3rd cycle of 3F8’s and is testing this week. Please pray for “clean” scans.
Christi: is home in Ohio recovering from surgery and will begin a new chemo on Monday. We are praying that this new drug is the answer to clean marrow for Christi; she and Harrison are so much alike fighting so hard and so bravely to get into remission.
Michael D: the preliminary results have been good on his latest set of scans but the official results are still pending. We continue to pray for Michael to demonstrate response to his latest therapy, and Simon: who continues to struggle with low platelet counts.
And for all of the other children facing such difficult and uncertain times.

Sunday, July 27, 2003 11:05 AM CDT

"The bad news is: ours is an arduous, long and sometimes tedious journey through Cesspool and Cosmos. And observe, it is a walk, not a sprint. The good news is: we are not alone on this demanding pilgrimage, which means that some folks we are traveling with make awfully good models to follow. So, follow them!”

I hope everyone is having a good weekend. My very good friend Beth sent me this quote in an email many months ago. I was thinking recently about the people I have met along this journey with my son and I thought, wow, I have really been so blessed. The families that we have met who too are in treatment are among the strongest, kindest, and most faithful people I have known. And likewise the people who are not battling cancer but who have entered our lives to show kindness, love, and support, too, have been amazing. I have been so fortunate to become close with many of the families, especially the Moms that I see almost everyday in clinic and I grateful to have such “good models to follow.”

Well, the weekend is almost over and it soon will be time to begin another week of treatment. The great news is that it is the end of a very long 8 weeks and we should be back in NC by Friday evening or at the latest Sat. afternoon depending on how travel plans unfold. Harrison has done well with the dual treatment week and I am praying this coming week goes as well. Mike came for the weekend on Friday night and Harrison and his Dad have had a great time playing and enjoying each other. We went into Newark last night for a great meal of Portuguese food, one of my very favorites. I really enjoyed myself and Harrison was excellent in the restaurant. The most amazing thing happened at the restaurant; an Aunt and Uncle, who I have not seen in about 15 years, due to a family falling out walked through door and sat at the table right next to us. We immediately saw each other and made contact. It turns out that they had heard about Harrison through family and friends and have prayed for him and asked as they travel to Europe next week could they pray for him when they make their special trip to St. Anthony in Padua, Italy. It just amazes me over and over how Harrison continues to bring people together and in this case helping to heal hearts that have been very heavy over the years. I am always trying to find the blessing in this journey and Harrison’ spirit never fails to bring us to it. Today we are cooking a mini Thanksgiving dinner, both because it is a wonderful meal and because as I see it we have much to be thankful for.

I also wanted to thank everyone for all of their prayers for Harrison and his friends. Michael R and his family received excellent test results on Friday and he remains cancer free!! Michael D is scanning this week; please continue to pray for him. Bryce completed a tough 2 weeks of antibodies but is doing well. Simon continues to battle his low platelet, please pray they find the answer soon. Christi had a very successful surgery and all the tumor was removed but is struggling with some side effects of the surgery, please pray for her. Stephen received his new leg last week and was walking all over the clinic—congratulations Stephen! And Jake is at home in NC moving into his new house and preparing to come back to NYC for scans next week; please pray that the 3F8/beta-glucan is the answer for Jake and that his disease is diminished. And please continue to pray for all of the children, throughout the world who are facing hardship—children should not suffer.

As for what is next for us: we will have 2 weeks off and will return to MSKCC for round 3 of Arsenic Trioxide followed by a week of a full battery of tests to see how much effect the Arsenic and the radiation have had on the remaining disease. Of course I always pray to hear the word NED (no evidence of disease). The team will make a recommendation about what to do depending on what the test show or shall I say don’t show (smile!!!). As it turns out Harrison’s last HAMA test was negative, which means that going back to 3F8’s antibodies is a possibility and that is a great thing because we know that this treatment did indeed help to clear some of the disease in Harrison’s marrow. So the bottom line is that once again Harrison will call the shots based on response but the good news is that there are still options, he feels great, and we are still ready, willing, and able to fight fight fight. I will update again hopefully from home sweet home, North Carolina!!!! With love and gratitude, Gina

Monday, July 21, 2003 3:05 PM CDT

“The spiritual traveler moves at speed, holding on to very little,
tolerating their challenges, and accepting life as they find it.

Moving into the unknown is a matter of melting the resistance that one
has to change, taking responsibility, and being able to accept that
nothing is permanent and it doesn't have to be for you to feel secure.

For in the end, we will all change and melt into something bigger and
better….”


Hello everyone: A friend sent this to me a while ago and it seems a good time to reflect on it and share it with you all. As many of you know last week I attended the services of one of Harrison’s friends, who at the tender age of 5 became an angel. It is more than difficult to try and make sense of this loss but my greatest hope is that Nick’s sprit knows a peace and calmness beyond anything we can imagine and that his parents are able to find some peace and serenity in their own lives as they try and move forward. As a parent of a child battling the same disease I find myself living more present moment than ever; meaning that I am trying to enjoy life and make the highest choices possible in the very moment I have to make them. I think at times circumstances influence us to “live life to the fullest” instead of “living a full life” and if you think about it there is a big difference. It almost feels like the difference of living for death verses living for life. I have resolved myself to the idea that, for Harrison, I am going to do my best to “live a full life.”

With all that said let me say that Harrison is living it up 4 year old style. As you can see from the NEW PICTURES he went swimming this weekend for the first time in over one year! He swam and swam and swam for 2 whole days and DID HEHAVE A BLAST!!! Thank you so much AGAIN Aunt June and Uncle Albert for a great weekend in your pool and a special thanks to Jason, Katie, and Ryne for such a good time playing. As you can see we had a really excellent weekend (you will notice no pictures of me in a bathing suit (HA HA HA!!!) before we started the first of our last 2 weeks of treatment- YEAHHHH!!!! Today started our last 2 weeks of both Radiation and Arsenic Trioxide. So far, Harrison seems to be doing well; they expect that the side effects will build as the week progresses so we will just to have wait and see and pray for the best. As for the weeks ahead we will be getting a 2 week break-YEAH!! And will be able to head home around August 1st. Dr. Kushner (at this time) feels strongly that Harrison will remain stable thus we will not be doing our usual battery of tests until after the 3rd round of Arsenic (August 18th –29th). I guess that is all I have for now but I will update again towards the weekend. Please keep Harrison and his friends in your prayers, especially Michael R (who is doing scans this week), Michael D (who is scanning next week), Bryce (who is doing 3F8 antibodies), Jake (who is back in NC after a tough 2 weeks of 3F8’s), Simon (who is struggling with low platelet counts), and Christi (whose first BIG surgery is July 24th) and of course all of the many children who are so brave as they face the best and worst of times. With love and gratitude, Gina

Wednesday, July 16, 2003 4:53 PM CDT

Hello all: Well, so far so good. Harrison started Radiation on Monday with anesthesia and he seems to be doing well. The Radiation team says everything is going as planned. The CT results are in and it too showed “stable” disease and Dr. Kushner is very happy we are keeping things controlled. Harrison will begin his second round of Arsenic Trioxide on Monday along with Radiation. How will he do with both treatments you ask? Well that is a very good question except that so far there has not been a child to do Radiation and Arsenic together. The team is sure that all will be fine and that there will be no danger to Harrison, let’s hope they are right. As for what is going on in our lives since I last wrote: Mike came for the weekend and Mom and Dad surprised us with a family weekend in Mystic, Conn. Yes Harrison ate at the famous Mystic Pizza restaurant that made Julia Roberts so famous. We had a wonderful weekend and spent some great family time together [see NEW PICS from the weekend]. Thanks Mom and Dad for your unfailing support, for your efforts to lighten my load, and for a GREAT weekend. Today we went to the Children’s Museum then out to lunch and then to the park. We have been trying to fill Harrison’s days with some fun activities after treatment, hoping to give him some sense of a normal life, but in the cancer world life is often anything but normal. I leave you with a bit of very sad information tonight and ask for your prayers. One of Harrison’s friends became an angel last night; Nick, who just had celebrated his 5th birthday, passed peacefully last night from neuroblastoma. Please pray that his parents Fran and Sal are able to find some comfort and peace as they try and heal from the loss of their precious child. I cannot even begin to make sense of why children die. I am going to attend the services tomorrow night in hopes of paying my respects to one of the bravest little guys I had the privilege of knowing. Hug your little ones a little tighter tonight, for they are so very precious. Love, Gina

Thursday, July 10, 2003 4:49 PM CDT

“The Human Spirit is measured not by the size of the act but by the size of the Heart”

This is a quote that is painted on a giant tarp that hangs over a building next to where the twin towers used to stand. We pass it everyday driving to clinic and I think it is such a wonderful summation of the Human Spirit, and in the “Spirit” of celebrating our Nation’s independence I thought I would share it with you.

We hope everyone had as good a 4th of July as we did. What a wonderful weekend we had; after treatment on Friday we set off for the shore to Grandma’s friend’s house and what a beautiful house it was. It was right on the water with a great dock complete with a boat and wave runners, and even a pool for Harrison. June and Albert were such gracious hosts with a beach trip on Sat. and crabbing on Sunday and not to mention all the delicious meals in between. Thank you so much to Aunt June and Uncle Albert for a terrific weekend. And thanks to Jonathan and Keith for spending hours building Harrison one GREAT sandcastle [SEE NEW PICTURES]. We were sad to leave the shore and head back to the Big City on Sunday but alas we needed to be in clinic on Monday. Well, as you know this was once again a big test week for us to find out how well the new treatment of Arsenic Trioxide was working. We had an MIBG scan on Wed. and a CT scan today. The MIBG shows that Harrison’s disease is “stable.” This means that there has not been a dramatic response to the treatment YET but that also means that there is NO “new” disease and in the world of neuroblastoma that is definitely a GOOD thing. His docs are pleased with how things are going so far, another plus for Harrison. As for the CT we will not get the results until Monday but everyone is fairly certain that it too will be considered “stable.” We are not at all discouraged but instead grateful that Harrison remains well. The treatments have a cumulative effect so we are hopeful to see results as we get further along with the treatments and we are so thrilled for the excellent quality of life that Harrison is currently experiencing. For so many months he has endured 8 rounds of chemo and 3 surgeries and that makes for some pretty crummy days. However, with these current treatments he seems to feel very well, is gaining weight, and running full throttle and I hope he is in for a great summer. It’s funny, right after diagnosis last year we so badly wanted Harrison to get into remission as quickly as possible and get on with our lives. Now almost 14 months later, we are still praying and hoping for remission but we are also grateful beyond words to still have Harrison with us and we are just plain thrilled with how well he looks and feels and how much he is enjoying life despite his daily trips to clinic and despite his cancer; children are just amazing beings. What’s next you ask? We will begin radiation treatments on Monday for the next 14 days. They will radiate the original tumor site areas as well as the currently active lymph nodes. The following Monday (July 21st) we will begin our 2nd round of Arsenic Trioxide and pray that we are able to see some positive results as he receives more and more treatment. Thank you so much for stopping by and sharing our triumphs and occasionally our sorrows; your constant love and support are such a source of comfort to our whole family. We hope you all have an excellent weekend. Mike is coming in tomorrow and we are going to have some much-needed family time. With love and gratitude, Gina

Our friend Bryce’s scans turned out just fine and he is now NED (no evidence of disease), way to go Bryce!!!!

Please say some extra prayers for our friend Jake. He is currently doing the beta-glucan/3F8 trial that Harrison was on but is not having an easy time of it. You can stop by Jake’s page and check in on him, don’t forget to leave a note of cheer in his guest book, www.caringbridge.org/nc/hopeforjacob

Thursday, July 3, 2003 2:59 PM CDT

Hello all and Happy 4th of July weekend: Harrison is doing fine. He got his new line today, a med-a-port, and did well with that. We have treatment tomorrow and right after that we are off to the shore to Grandma’s friend’s house for the weekend. Harrison has stocked up on new sand castle building equipment and is really looking forward to the trip. Plans have changed a little for the next 2 weeks. Harrison will not be starting radiation next week but will start the week of July 14th; this is due to the testing schedule. He cannot have his tests the week of radiation because of an anesthesia/sedation issue so it will be postponed one week. On Wed. we have our MIBG scan and on Thurs. he has a CT scan. The MIBG will let us know the status of Harrison’s bone marrow and any live neuroblastoma cells and the CT will tell us about the lymph nodes. So we are praying that the MIBG shows a decrease in cancer in the marrow and that the CT shows that the lymph nodes have stayed in check or responded to the Arsenic Trioxide treatments. Please keep those prayers coming Harrison’s way. We need for this treatment to work!!! WE NEED CLEAN MARROW!!! Please also pray for our brave little friend Bryce who is doing his post transplant scans this week. I know he will be fine but the added prayers always help. HAVE A GREAT WEEKEND, we sure hope to. Love, Gina

Sunday, June 29, 2003 4:01 PM CDT

Hello everyone: We just arrived back at the apartment from dropping Mike off at the airport. He is off to NC and I only got to see him for about 4 hours-- he flew in on Thurs. as I flew out to Chicago-- we actually met at the terminal and then I flew back around 12 pm today and he left at 4 pm for NC, oh well this is life in our world. The good news is the weekend was a success both in NYC for Mike and Harrison and for me in Chicago. The conference was VERY informative and we learned about several new Phase I trials that Harrison may qualify for if we need to choose another therapy. I will spend the next few weeks researching them further and asking many questions—it was definitely worth the trip. The bonus was that I had never been to Chicago before and the time off from the conference allowed Dad and I to do some sightseeing and shopping—what a GREAT city, thank you Pat T. for the wonderful conference and weekend. Mike, Grandma, and Harrison had an equally good time. They spent Sat. sightseeing as well on the famous aircraft carrier "The Intrepid," which is parked in the Harbor on the Westside of the city. Harrison had a great time and loved telling me all about it. His first week of Arsenic Trioxide seemed to go without complication and we are hoping for the same this week. On Thursday Harrison will receive a new catheter, as we are still working with the temporary line they put in during our in-patient stay 2 weeks ago. What’s next after that you ask? Well, after next week’s treatments we will start testing the week of July 7th to see if it had any impact on Harrison’s marrow and we are PRAYING, PRAYING, and PRAYING some more that it has. Also, during the week of July 7th we are starting 2 weeks of radiation therapy to the current lymph nodes and to the original tumor site areas. He will receive anesthesia every morning to keep him asleep during the treatments both so he does not move and so he is not scared—I am not allowed in the room with him and as many of you know Harrison that will not do for him at all. So please pray that all goes well with 14 days of anesthesia. Provided the Arsenic treatments are helping or holding the disease static we will start the second round the week of July 21st. So if you have your calendar out you can see that Harrison has treatment everyday for 6 weeks—unfortunately that means we will not get to NC until around August 2nd. If all is well then we should get almost 2 weeks off!!! YEAH! I am sure we will need a break by then. Well, not much else to report at this time. Just keep those prayers coming—WE NEED CLEAN MARROW!!! Thank you for all the love and support and I will keep you posted. With love and gratitude, Gina

Monday, June 23, 2003 6:43 PM CDT

Hello all: Well we have successfully completed our first infusion of Arsenic Trioxide and you would have thought Harrison was getting just Normal Saline—I hope it works better than that though—he did GREAT. So far so good!!! We also received another piece of good news today; Harrison’s bone marrow biopsies (done on Tuesday, while we were in-patient) came back negative for neuroblastoma. Although his MIBG is still showing contaminated marrow it is always nice to have clean biopsies. Harrison had a very good day spending most of it in the playroom with the great Child Life staff and the volunteers. I hope the rest of the next 2 weeks goes as well as today and that the Arsenic is the key to clean marrow for Harrison. My Dad and I are off to Chicago on Thursday for the 2nd annual Neuroblastoma Conference; we are on an information gathering quest in the event that we need to choose yet another form of therapy for Harrison. Many of the top medical names in the field of Neuroblastoma will be speaking about various topics including different therapies and new trials. The head of the Neuroblastoma team from Sloan will be speaking too. Mike is flying into NYC and he and Grandma will be entertaining “the man” while I am away. I will update again at the end of the week, thanks for stopping by and checking up on our brave little fighter. Warmly, Gina

Friday, June 20, 2003 8:00 PM CDT

Hello all: Just wanted to post a brief update that we are back at the apartment tonight. We are still on schedule for Monday to begin the new treatment. The latest news is that the CT scan we did on Wed. of Harrison's head is NEGATIVE for disease!!!! They were worried about a spot behind his left eye but as it turns out it was nothing-- thank you God. Anyway we hope to enjoy a calm weekend before the start of the next 6 weeks of treatment. Wish us luck and I will keep you posted as we go. Love, Gina


Wednesday, June 18

Good evening all: Well, not much has changed since I have last updated. Harrison is still feeling well and with the exception of the CT scan he had today he was in the playroom the entire day. We had a great visit from some of Grandma’s friends today and the unexpected surprise of getting our pals Stephen and his Mom Eva as our new roommates. Stephen is neutropenic and had a slight fever but he will be fine. The boys are having a ball in their room and I of course always enjoy the late night chats with Eva—we have drawn back the curtains that separate the two sides of the room at it is almost like a big suite now!!! As for the weeks ahead and after many long talks with Harrison’s team of docs and much soul searching and prayer we have made some decisions about what to do next—we are going to start a new treatment on Monday and are possibly starting radiation the week of July 7th. They are running the usual slew of tests this week to get us ready for a new treatment—Arsenic. I know that just by its name it sounds terrible but it is actually such a low dose that it is less toxic than most of the chemos he has had and there should be relatively low side effects (no hair loss, nausea, or neutropenia). Arsenic is actually used as a CURE for some forms of Leukemia and for Neuroblastoma patients with static and refractory disease like Harrison’s it has often done a good job helping to reduce some of the cancer and/or keep it at bay, so we are hoping that this new treatment will allow Harrison to remain stable or improve until we can get HAMA negative and perhaps resume antibody treatments. The radiation is a standard treatment for most all Neuroblastoma patients. They usually radiate the initial primary tumor site or sites to help with some extra insurance against relapse. So Harrison will have very specific radiation to the places in his chest cavity, abdomen, and under the arms and neck where the original tumor was (before Dr. LaQuaglia worked his magic and removed it) and to the current lymph nodes that we have been keeping and eye on. The Arsenic treatments are 2 weeks on 2 weeks off—during the first 2 off weeks we will do the radiation treatments. So Harrison will have some treatment everyday for about the next 6 weeks and then we should be able to get a short break before the 3rd Arsenic cycle. If all goes well the Arsenic is done for 5 cycles, which comes out to about 5 months. So this is the plan which as you all know is always subject to change based on Harrison’s response to the treatments. Mike and I feel good about the decisions we have made; this was the recommended treatment by Harrison’s team and they are hopeful that he will have some response. There are still some treatments available that we can pursue if necessary, so for now we will try this and hope and pray with all our hearts that we have made the best decision for Harrison. Please keep Harrison and his friends in your thoughts and prayers as they make their way through this incredible journey of strength, courage, and faith. As always, with love and gratitude, Gina

Sunday, June 15, 2003 12:16 AM CDT

Hello all: Well, things have definitely taken a turn for the BETTER! Harrison has responded very well to the antibiotics once we removed the contaminated catheter and with the help of all his white cells he is doing great. He requested his usual “feel better” food, Lo Mien, for dinner last night and for breakfast today! We have been moved out of the POU and into a regular room and he is currently in the playroom with Mike for a Father’s Day party. We still have to stay until Thursday so he can get his full course of antibiotics but he is most certainly out of the woods and on the road to recovery; the hardest part now will be entertaining him for the next 5 days in a room the size of a walk-in closet. As for what is to come next we are still exploring the options with Harrison’s amazing team of doctors; we have a few choices but have not made a formal decision yet. They have gone over his test results from last week again and are certain that he is making progress, slow progress but progress nonetheless so Mike and I are certain that Harrison will champion over this disease it is just going to take the right combination of what will work for him. I will keep you all posted on what’s next. Thank you all for the wonderful words of love, encouragement, and support they give me so much strength during these tougher times.
With love and gratitude, Gina
P.S. Thanks Auntie Erin for the “Finding Nemo” computer game; it is a HUGE hit!!!

Friday, June 13, 2003 3:13 PM CDT

Hello everyone: Sorry it has been a while since I have updated but things have been very crazy here. Let me start at the beginning (from last Wed.). As you know the scans were good, meaning they showed stability or improvement and this is a good thing. We do, however, still have a positive HAMA, meaning that the 3F8 antibody trial we were on is no longer an option. So we must now find a new course of treatment. In the meantime, on Wed evening around 8:00 pm Harrison got a fever out of nowhere. His counts are very good so this was very unusual. Of course this means a trip to the hospital and an impatient stay. As it turns out Harrison has a rather serious line infection; they have moved us to the POU (pediatric observation unit) because we had trouble getting his blood pressure stable (due to the infection) and today they surgically removed his central line and put a new temporary line in and they are running IV antibiotics around the clock. He has not had a fever since 6 am this morning (knock wood) and is considered stable at this point. So here we are in the POU but getting better. It looks as though the infection is under control but we will stay in the hospital for at least another seven days. I am not sure what treatment plan we will opt for next (we do still have a few choices), for now we are just working on getting through this current issue. The 2 pieces of good news are that Harrison has plenty of white cells of his own to fight the infection and the residual neuroblastoma that exists has remained stable or has improved so we do have some time, to get through this infection and make a plan for future treatment. In the meantime we could still really use all the prayers and loving thoughts sent our way to get through this current hurdle. Mike and I trust that with the neuroblastoma team's help and by following our hearts we will find a new course of treatment for Harrison and move a few steps closer to remission. Please keep the faith and remember Harrison in your prayers. I will update again when there is more news.
Side note: We saw “Finding Nemo” last weekend and I can finally stop eating all those darn Happy Meals!!!
Thank you all for continuing to stop by and check-in on our precious baby.
With love and gratitude,
Gina

Friday, June 6, 2003 2:04 PM CDT

Hello Everyone: Well, the results are in and Harrison did just fine. Although we still have measurable disease things look like they are continuing to get better!!! The CT scan showed that the lymph nodes we are watching are getting smaller (YEAH) and there is NOTHING new to report (YEAH YEAH)!!! The MIBG scan was still positive in the bone marrow but things there are reported to be stable or slightly improved. So, given the alternative we are grateful for the “overall” improvement and we will continue to work to get Harrison into remission. As for the course of treatment, well, that remains to be seen. The docs are encouraged by the scan results and would like to continue Harrison on the Beta-Glucan/3F8 trial but there is the matter of that little blood test called a HAMA. They reviewed it again and the levels are just too high to begin on Monday; so they are going to re-test his blood on Tuesday and hope that it is HAMA negative. If it is then we will start our 3rd cycle of 3F8s on Monday June 16th. If it is still positive I am not sure what the plan will be but I will keep you all posted. We are so grateful to be making these positive small steps every month. We have some very dear friends who have been really struggling; please pray not only for Harrison to be able to continue on this treatment, that seems to be working for him but for all the other children who are so bravely fighting for their lives everyday. On a personal note Harrison looks great and is feeling wonderful. He has been playing, eating, and giving me a good old fashioned run for my money; and thanks to McDonalds and NEMO I have eaten more bad cheeseburgers than I care to admit in the last 4 days trying to collect all those "darn" Happy Meal toys, UGGGHHHH!!!! Thanks for checking in on us; I won’t have much more medical news until next Wed. but I will post if we do anything fun and exciting over the weekend. As always with love and gratitude, Gina

Thursday, June 5, 2003 7:30 AM CDT

Hello Everyone: PHEW!!! Harrison and I made it to NYC with no problems. We took a wonderful Corporate Angel flight and when we landed a car and driver picked us up at the airport. Ok, so now Harrison not only has what he refers to as his “private plane” but now a car and driver! We arrived safely at the apartment where an Enterprise van later picked us up and took us to our rental car. We then hit the grocery store, cleaned the apartment, and unpacked. WOW, I guess I never realized what a big help Grandma and Grandpa were, I am grateful to have such wonderful parents who are so dedicated to Harrison and I; Harrison and I have come on our own for the first time this week. Anyway we are fine and Harrison has done great. We had a wonderful week off and a great time at the beach (new pics soon to come….). Now for the medical update: We went yesterday to clinic for a CT scan but will not have results until Friday. Today is the nuclear med. scan (MIBG) results also on Friday. We found out yesterday that Harrison’s HAMA test (Human Anti- Mouse Antibody) was slightly positive/inconclusive. What this means is that he is possibly developing an antibody to the antibody; this is eventually a good thing but not this early; we would like to finish the trial. So they are going to repeat the test next week hoping that it will be negative. If the scans are good (meaning they are improved or stable) and the HAMA is negative we will resume antibody treatments a week from Monday (June 16th). If the scans go the other way and/or the HAMA is positive then we will have to find another course of treatment. That’s all the medical scoop for now. I will update again on Friday afternoon after the results are in; in the meantime please pray, pray, pray that the scan results show that Harrison continues to respond to the treatments and that we are able to continue. Love, Gina

Friday, May 30, 2003 9:26 PM CDT

Hello all: Sorry I have been so slack regarding a recent update but we have been really enjoying our time at home. We have spent a lot of time with our family and friends and Harrison has been having a ball. I was even able to get out a few nights out with the girls!!! Anyway, things here in NC are fine and the weather is beautiful. We spent a great day with our friends Jake and Chanda on Thursday (SEE EXCELLENT NEW PHOTOS) and we are currently at Grandma and Grandpa’s house at the beach for a few days of sun, fun, and sand. Harrison and Grandpa are famous for their sand castles so that is on the agenda for tomorrow. I am hoping to post good beach pictures at the end of the weekend. Harrison and I are heading back to NYC on Tuesday, June 3rd for tests on the 4th and 5th to make sure that all those yucky neuroblastoma cells are behaving themselves and not getting out of line. I will update before we leave for NYC. Please continue to pray for Harrison and all the other children fighting so hard everyday. Thanks for checking in with us. Love, Gina

Thursday, May 22, 2003 2:34 PM CDT

Hello all: Well week 2, cycle 2 is almost over and it has gone well. Harrison has had little pain and has tolerated the treatment very well. Everyone is wondering if he has developed a HAMA (human anti mouse antibody) because he has had such little pain. We will know the week of June 2nd. Until then we will just plan to continue on the 3F8/beta-glucan study. On Monday night we went to a friend’s medical school graduation and got to see many friends and even witness a marriage proposal (Congrats Jason and Tracy!!!). On Tuesday we spent the whole afternoon with our friends Bryce and his parents Beth and Bart in Central Park and that was a GREAT day. The weather was beautiful and we really took advantage of it. We had a picnic lunch, played a little softball with the boys (Harrison much to my surprise had great hand/eye coordination—perhaps we have a future baseball player on our hands!), and then Bart rented them remote controlled sailboats on the little pond in the park; we then toured the zoo, and even took a horse and carriage ride. And to end the day perfectly Harrison and I took a taxi ride across town, through Times Square to the Ferry and rode it across to New Jersey and all this after antibody treatments!!! It was one of the best days we have had here in NYC—Thank you Bryce, Beth, and Bart for spending your precious day before transplant with us. Wed. was less eventful than Tuesday and today we are back at the apartment getting ready to head back to NC after treatment tomorrow. The past three weeks have really gone quickly. We have spent the last 2 weeks in clinic with some wonderful families. We have shared a room with Carl, who is just a sweet and as cute as can be (www.caringbridge.org/mn/carcar) and with Morgan who is as fun and as spirited as Harrison, they made great roomies (www.caringbridge.org/nc/morganbarnes). And Jonathan was right across the hall (www.caringbridge.org/canada/jonathanspage), he is as stoic as Harrison with the treatments. Like Morgan’s mom Allison says, we are a club no one ever hopes to join but we are a great group of people who are very dedicated to each other. Anyway sharing the week with these kids and their mom’s and dad’s sure made the weeks fly by. Thanks guys for the company!!! Well, that’s all for now folks. I will update again from NC. Please pray for Harrison and his friends (Bryce, Jonathan, Morgan, Carl, Jake, Christi, and Michael D.) just to name a few and for all the children facing such difficult times, they are all truly inspirations in the face of adversity. Thanks for checking in. Love, Gina

Monday, May 19, 2003 2:17 PM CDT

Hello all: I know it has been a while since I have updated but everything here with Harrison is fine. We finished week 1 on Friday and Harrison did very well. We have had a good weekend; we went to the shore (for my Southern friends that’s what Northerners call the BEACH) on Sunday to a friend’s house (thanks for the hospitality Barbara and John) and had a very nice time out of the city for the day. Today is the beginning of week 2 and so far so good. Harrison did great today, no pain and no sickness!!! We will finish up this cycle on Friday and will then try and head back to NC for a week or so. Harrison has tests scheduled on the 4th and 5th of June to make sure everything is going ok and that he continues to show improvement and that no additional disease occurs. The concern with all the kids doing this trial is that the antibodies seem to work on bone marrow but not too well on solid tumor tissue and Harrison has some lymph nodes that we would like to keep an eye on. Anyway we are doing fine but looking forward to a week back in NC with our friends and family. I do have some special prayer requests today, not for us but for some of Harrison’s friends who are bravely fighting for their lives. Our friend Michael D. (who is also 4 y. o.) is having a tough time of it. He was on the same trial as Harrison but it seems that the antibodies were unable to keep his disease contained. They are exploring other options and trying to keep him comfortable; we are asking everyone to pray for Michael and for strength for his Mom as they try and face a very difficult time. In addition, our dear friend Bryce (he is 3 y.o.) is going to transplant on Wed. He too has bravely battled neuroblastoma for several months now and is doing well. Please pray that Bryce moves safely and easily through transplant and that his road to remission remain unblemished. And of course, please always remember all the children who face remarkable challenges everyday—may they always be triumphant! I will update again before we leave for NC. Thank you for checking in on us and for all the love and light you send to us everyday. With love and gratitude, Gina

Monday, May 12, 2003 6:34 PM CDT

Hello everyone: I wanted to say thank you to everyone who has sent such wonderful notes to us via the web page and my email. I can’t tell you how much strength it gives us to know how many people love and care for us—you all have reached in and touched our hearts—and for that I am so grateful. Well, week one of cycle two has officially begun and although we were off to a rocky start, Harrison has rebounded with his usual determination and strength as is currently playing a very competitive game of JENGA with Grandma and eating pastry from the bakery around the corner!!! Hopefully tomorrow will be better for him but all in all I cannot complain, especially since we know the treatment is working! We did get the marrow biopsy results today and one sample out of four did test positive for neuroblastoma cells, and although we were hoping for all four to be negative it comes as no surprise that some cells were found. Harrison will just have to keep up the good work until all those yucky cells are gone, gone, gone for good. The weekend was really nice. Mike and Harrison enjoyed some excellent father/son time and even bought a goldfish for the apartment (that is all the pet I can handle right now) that Harrison named Denis in honor of “Stanley’s” pet goldfish (you have to watch the Disney channel to really understand that one). Mother’s Day was spent at our cousin’s house for a delicious cookout where we all enjoyed great food and great family. Thank you Aunt Pam and Uncle Peter for a relaxing and fun day. And thank you all for your continued prayers for Harrison and all of his friends who, average about 3 ½ feet tall and about 3 ½ years old but have more strength and character than anyone else I have ever met. Well, that is about all I have to report for now—one day down and nine more to go. I will update again towards the end of the week. Our family hopes yours has a blessed and peaceful week. Love, Gina

Friday, May 9, 2003 11:43 AM CDT

All I can say is YIIIIIIIIPPPPPPEEEEEEEE!!!!!!! Yes, I have GREAT news to share. Harrison’s MIBG scan came back today and it has shown DEFINITE IMPROVEMENT in his bone marrow. This means that the antibody treatment IS WORKING to help rid Harrison’s marrow of neuroblastoma cells and we could not be more delighted or GRATEFUL for the encouraging news. The doctors are as thrilled as we are for the good results. As for the rest of the test results: the CT scan showed NO new disease (YEAH!!!!) but did show some stable lymph nodes around Harrison’s liver that are most likely cancerous. Because they are stable and not growing they are just going to watch them for now, another surgery is possible in the future, but we have NO progressive disease, which means that there is nothing new growing. The bone marrow biopsies will not be back until next week and we are hopeful that they will remain negative. Harrison is also HAMA negative, which means he has not developed an antibody to the antibodies and can continue with the treatments. So that is the plan for Monday morning; we will start another 2 week round of antibodies with the continued hopes these treatments will further rid Harrison of neuroblastoma cells. I want to thank all of you for praying and sending love and light to Harrison. I believe that it is the collective efforts of prayer, divine intervention, and medicine that have brought us this far in our journey. Mike is coming in this weekend and we are going to celebrate our good fortune together as a family. Last year, at this time, Mother’s Day week, we got diagnosed; it is going to be a much better Mother’s Day this year!!! Have a great weekend. As always, with love and gratitude, Gina

Friday, May 9, 2003 11:16 AM CDT

All I can say is YIIIIIIIIPPPPPPEEEEEEEE!!!!!!! Yes, I have GREAT news to share. Harrison’s MIBG scan came back today and it has shown DEFINATE IMPROVEMENT in his bone marrow. This means that the antibody treatment IS WORKING to help rid Harrison’s marrow of neuroblastoma cells and we could not be more delighted or GRATEFUL for the encouraging news. The doctors are as thrilled as we are for the good results. As for the rest of the test results: the CT scan showed NO new disease (YEAH!!!!) but did show some stable lymph nodes around Harrison’s liver that are most likely cancerous. Because they are stable and not growing they are just going to watch them for now, another surgery is possible in the future, but we have NO progressive disease, which means that there is nothing new growing. The bone marrow biopsies will not be back until next week and we are hopeful that they will remain negative. Harrison is also HAMA negative, which means he has not developed an antibody to the antibodies and can continue with the treatments. So that is the plan for Monday morning; we will start another 2 week round of antibodies with the continued hopes these treatments will further rid Harrison of neuroblastoma cells. I want to thank all of you for praying and sending love and light to Harrison. I believe that it is the collective efforts of prayer, divine intervention, and medicine that have brought us this far in our journey. Mike is coming in this weekend and we are going to celebrate our good fortune together as a family. Last year, at this time, Mother’s Day week, we got diagnosed; it is going to be a much better Mother’s Day this year!!! Have a great weekend. As always, with love and gratitude, Gina

Monday, May 5, 2003 4:34 PM CDT

Hello everyone: Yes, I have been a slacker and not updated in a while, but we have had such a good time at home in NC it was nice to forget about the web page, the cancer, the treatments, and all that stuff for just one week. We did make it home, thanks to Corporate Angel, on Friday evening. After arriving around 6 pm we headed right out to a fund-raiser dinner that was hosted by The Brickhouse Restaurant, in Davidson, for Godstock, which is an organization that lends financial and spiritual support to families who have children facing life-threatening illnesses. They are a great group of people whose generosity and support are amazing. Thank you to all those who made that event possible and to those whose generosity during the auction and golf tournament make it possible for many families, like ours, to provided their children with the best that medicine has to offer. And OF COURSE a photographer was there and took our picture for the Lake Norman Times (Harrison looked great and I looked like the typical clinic mom (YUCK!!!) Oh well. Anyway the week home was GREAT. We were able to attend Emma’s birthday party (note the new “Bob The Builder/Scoop” picture), see our family and friends, and spend some time on the lake (thanks Uncle Mark and Aunt Kelly for the warm sunny boat rides: SEE NEW PICS). Harrison had such a good time with his cousins and his friends it was hard for him to come back and I was able to get some much needed rest (thanks to Daddy, Aunt Sheila, and Auntie Erin for the relief pitching). We are back in NYC now for a week of tests to determine if Harrison is responding to the new treatments. Here’s the official medical update: So far Harrison is the number 5 child on the trial. The first 2 children unfortunately had progressive disease (this means that their cancer grew and was worse after one round of treatment, we will continue to pray for them and that they are able to find something new to help). The 3rd child had some improvement in his scans and clean bone marrow biopsies (YEAH) and the 4th little girl had stable disease, meaning the treatment kept it at bay but it did not improve. So this brings us to Harrison, who is number 5 to be tested. Today we had a CT scan to look at tissue (they want to make sure that there is NO new tumor growth), tomorrow we have bone marrow biopsies, and Wed. we have an MIBG (a nuclear medicine scan). We should have the results of most of the tests on Friday. We are PRAYING and HOPING beyond all hope that the bone marrows remain negative, that there is NO new tumor growth, and that the MIBG shows improvement in the areas that indicated disease still present. We are asking that all our friends and family join us in praying for these clean results, it would mean that they have found something that will help Harrison and many more children into remission. So many children with Neuroblastoma are counting on this new treatment to work, for many of us there are very few if any options left. I will keep the site updated as the results come in (I promise). Thank you for all of the love and prayers; this is going to be a very big week for us and I am grateful for all of the support. Please, Please, Please continue to pray for Harrison and for all of his friends who are fighting for their lives. With love and gratitude, Gina

Wednesday, April 23, 2003 8:24 PM CDT

Hello all: Well, three more days down and two to go. Easter weekend was really great and as my friend Tammy wrote we are hoping that large amounts of chocolate combined with Beta-Glucan produces an even better cancer fighting effect!!! Yes, the Easter Bunny was very good to Harrison—it looked like a mini Christmas around here. And the “Dora” show was GREAT—it was almost like a Broadway musical. Harrison is doing much better this week. He has experienced almost no pain and no other side effects. His heart rate gets a little high but that is totally expected and his throat itches a little but it is easily controlled with meds—so we are doing well. We even went Birthday shopping for my niece Emma yesterday after his treatment and then out for dinner. Our last treatment of this cycle is on Friday and then we are able to go home for one week. We have to be back in clinic on Monday, May 5th for the start of the many tests we will do to see if this treatment is working for Harrison. We have met so many nice families and their wonderful children who are also doing the Beta-Glucan/3F8 antibodies and other treatments with hopes of moving towards remission. I am grateful to have found so many lovely and strong people to share this often difficult journey with so if any of you are reading this—thank you for who you are and what you mean to me. We are headed home on Friday or Sat., depending on how Harrison feels, so I will update again after we arrive home this weekend. Until then please keep praying that Harrison and all of his teammates win the big game!!! Love, Gina

Saturday, April 19, 2003 9:02 PM CDT

Hello all: Well, things are looking much better since Daddy arrived on Friday and I got a much needed full night’s sleep. Thursday and Friday’s treatments went much better than the beginning of the week. They amended the protocol and the antibody is now infused over 30 minutes instead of an hour and a half and that really seemed to help—we were finished sooner so he felt better quicker and only required half the pain meds which is good because that’s what was causing the nausea. He has had no other side effects and his nurses are amazed at how well he is doing. He has been playing hard with his Dad all day and really enjoying their time together. We are all looking forward to seeing “Dora” tomorrow and then we are going out for a nice Easter lunch—it should be a really great day and the weather is supposed to be beautiful (65 and sunny). Thank you for checking in on us. I think next week will be better—we know what to expect and how to manage it all and I have slept some (that always helps). Many of you have written that the springtime is a time of “new life” or “rebirth” and we are certainly counting on this for Harrison. With love to you all and best wishes for a wonderful weekend, Gina, Mike, and Harrison.

Wednesday, April 16, 2003 7:03 PM CDT

Hello everyone: UUUGGGHHH!!! Sorry, it has been so long since I have last updated but we have had a time of it up here. We started the 3F8 antibodies on Monday and it has not exactly been a walk in the park. The 3F8s are made from the white blood cells of a mouse. They are administered IV and their job is to attach themselves to neuroblastoma cells, attack them and train your white blood cells to also attach the neurblastoma cells. In a nutshell, it trains your own body to fight the cancer. Well, over the course of the hour and a half infusion time the 3F8s can also attach themselves to your nerve cells causing extreme amounts of pain that require drugs 10 times the strength of morphine to cope with it. In addition to all of this, because the antibodies are from an animal your body can sometimes develop allergic like reactions so, common side effects include but are not limited to; vomiting, hives, full body rashes, closing of the air passage, high blood pressure, low blood pressure, loss of oxygen, facial swelling, loss of appetite, and the list goes on; your hair however does not fall out (I guess that’s the up side). Having said all of this I will tell you that Harrison has done fairly well. We started Monday and he did experience some pain, although it was for a brief period of time and the medications worked to help relieve him. The problem existed when his blood pressure bottomed out, he turned pale, and lifeless. As a result they admitted us for an overnight stay to observe him through the night. As it turns out he was fine. We did Tuesday’s treatment inpatient, just in case we ran into the same problem. They gave him enough fluid that his pressure remained stable through the treatment but we battled some vomiting. They did release us last night around 6 pm and we returned to clinic today for treatment outpatient. Today went pretty well, he did not seem to experience any pain but did get sick again. However, as far as side effects go he is doing pretty well. We have not gotten any rashes or hives and he has not needed any oxygen. The treatment goes for two weeks so we are three days down and 8 to go. He should feel pretty good over the weekend. The nights are hard; he does not feel well in the evenings but is good by morning. He is lively and eating and drinking during the breakfast and lunch hours. So the overall picture is not so great but definitely could be worse. Sorry, this update does not bring better news but reality is reality at this point. I am holding up ok just a little tired. Mike is coming on Friday and I am looking forward to some relief pitching. I will probably not update again until the weekend. We are looking forward to a visit from the Easter Bunny on Sunday and then we are off to Radio City Music Hall to see “Dora the Explorer Live on Stage” early that afternoon. Harrison should feel good for the weekend. I hope you all have a great weekend and if you are celebrating Easter have a nice holiday. We are going to be fine, it always gets better I know that and I am looking forward to the end of the 2 weeks when he feels good. Thank you for all the notes in the guestbook, it is so nice to know how many of you are so involved in our lives. With gratitude and love, Gina

Wednesday, April 16, 2003 7:03 PM CDT

Hello everyone: UUUGGGHHH!!! Sorry, it has been so long since I have last updated but we have had a time of it up here. We started the 3F8 antibodies on Monday and it has not exactly been a walk in the park. The 3F8s are made from the white blood cells of a mouse. They are administered IV and their job is to attach themselves to neuroblastoma cells, attack them and train your white blood cells to also attach the neurblastoma cells. In a nutshell, it trains your own body to fight the cancer. Well, over the course of the hour and a half infusion time the 3F8s can also attach themselves to your nerve cells causing extreme amounts of pain that require drugs 10 times the strength of morphine to cope with it. In addition to all of this, because the antibodies are from an animal your body can sometimes develop allergic like reactions so, common side effects include but are not limited to; vomiting, hives, full body rashes, closing of the air passage, high blood pressure, low blood pressure, loss of oxygen, facial swelling, loss of appetite, and the list goes on; your hair however does not fall out (I guess that’s the up side). Having said all of this I will tell you that Harrison has done fairly well. We started Monday and he did experience some pain, although it was for a brief period of time and the medications worked to help relieve him. The problem existed when his blood pressure bottomed out, he turned pale, and lifeless. As a result they admitted us for an overnight stay to observe him through the night. As it turns out he was fine. We did Tuesday’s treatment inpatient, just in case we ran into the same problem. They gave him enough fluid that his pressure remained stable through the treatment but we battled some vomiting. They did release us last night around 6 pm and we returned to clinic today for treatment outpatient. Today went pretty well, he did not seem to experience any pain but did get sick again. However, as far as side effects go he is doing pretty well. We have not gotten any rashes or hives and he has not needed any oxygen. The treatment goes for two weeks so we are three days down and 8 to go. He should feel pretty good over the weekend. The nights are hard; he does not feel well in the evenings but is good by morning. He is lively and eating and drinking during the breakfast and lunch hours. So the overall picture is not so great but definitely could be worse. Sorry, this update does not bring better news but reality is reality at this point. I am holding up ok just a little tired. Mike is coming on Friday and I am looking forward to some relief pitching. I will probably not update again until the weekend. We are looking forward to a visit from the Easter Bunny on Sunday and then we are off to Radio City Music Hall to see “Dora the Explorer Live on Stage” early that afternoon. Harrison should feel good for the weekend. I hope you all have a great weekend and if you are celebrating Easter have a nice holiday. We are going to be fine, it always gets better I know that and I am looking forward to the end of the 2 weeks when he feels good. Thank you for all the notes in the guestbook, it is so nice to know how many of you are so involved in our lives. With gratitude and love, Gina

Friday, April 11, 2003 5:58 PM CDT

Hello all: Well, as many of you know our stay at home was less than brief. I thought we could get our CT scan at home (NC) but as it turns out that was not possible so we headed back to NYC only 48 hours after we got home. We arrived back in NYC on Tuesday evening around 9 pm and headed to clinic at 8:30 am on Wednesday morning for a CT scan and to sign consent forms for the new trial. Since then we have met up with our friends Jake and Chanda; Jake was also up at Sloan for tests this week. The boys had Wed. afternoon and today free together so we have been traveling to all the best toy stores in the Tri-State area. We were hoping for some good weather so we could hit the park and the zoo again but alas Mother Nature did not cooperate and so toy shopping was the activity of choice. The boys, of course had a ball together and it was great to spend some time with Chanda. Harrison also, as you can see from the new picture had an unexpected but wonderful visit with the Easter Bunny who he promptly sent a letter to with requests to fill his Easter Basket. I hope the Easter Bunny has another connection besides Toys “R” Us because we have exhausted that store. I do not have any results on the CT but will get those on Monday. He does start the trial on Monday but because this is so new we do not know how the 4 kids before him have responded. We should have some idea of how the first group is doing in the next 2 weeks. I am praying for them and for us that this new trial works. I will keep everyone posted as our week progresses. I do know that the pain associated with the antibodies can be difficult for many children and we are keeping our fingers, toes, and anything else we can cross that Harrison does well and the pain is manageable for him. Thank you all for checking in on us and we hope you have a great weekend. We are picking Grandpa up from the airport tomorrow and headed out to a nice dinner for Grandma’s birthday. In peace and love, Gina

P.S. Our friend Stephen had his second lung surgery today and it was a great success. They were able to remove the 2 spots they were after and it looks as though the cancer in those spots was inactive. YEAH!! Way to go Stephen. We are praying for a quick recovery.

Sunday, April 6, 2003 3:27 PM CDT

Hello everyone: Sorry it has been a while since I have posted and I know many of you are anxiously awaiting our results but it has been a tough couple of days. Harrison's test results were not what we had hoped for. The MIBG scan is showing that he still has disease in his marrow despite the negative biopsies and aspirates. The good news is that the bone scans are normal which means that the disease in the hard bone is healing and the MIBG showed no evidence of left over tumor or new disease -- so we are doing our best to be grateful for this gift although we are saddened about the disease in the marrow. This brings us to a crossroads where Michael and I had to make a decision about what we are going to do next. Mike flew up to NYC on Thursday evening to attend the meeting with the docs on Friday and here is what we (the docs, Mike and I)decided: The team (Harrison's 4 doctors) is fairly certain that additional high dose chemo will not be effective in cleaning the marrow. They believe that the disease that is left has possibly built up a tolerance to the chemo and we need to try something else. He does not qualify for the 3F8-GMGCSF antibody treatment that many of the children are getting and that we know works because it only works on very small and almost undetectable amounts of disease and Harrison has more than that. So, without too many choices left, we have enrolled him in a new study which is just beginning at Sloan under the supervision of the doctors that created the 3F8-GMGCSF antibody. Harrison will be participating in a Phase I trial of the 3F8-Beta Glucan antibody. Essentially, it is the same antibody agent (3F8) that we know already works but instead of being coupled with the GMGCSF it is coupled with Beta Glucan, which is natural substances found in yeast, mushrooms,oats, and barley. It has never before been tested on patients but is having great success in lab animals with large amounts of neuroblastoma tumor by stimulating the body's own immune system to fight the tumor cells. Harrison is one of 6 children beginning the study. It has only been in effect for 3 weeks. I am sorry this is so long but I wanted to take the time to really explain to all of you who are so concern about Harrison. So with all this said we are going to start the antibody treatments on April 14th. The study calls for 2 weeks of treatment followed by 2 weeks of rest during which time a series of tests are conducted to evaluate the effect of the treatment. Mike and I are a little nervous about all of this but are faced with little choice. However, what we are confident about is that Harrison's is a strong little guy and it would be sooooo like him to help his doctors prove that this new combination of drugs works and we have a lot of faith in Harrison, God, and that the doctors are helping us make a choice that is in the best interest of Harrison. The most amazing thing is how well Harrison actually looks and feels. Most people, including his doctors, are amazed at his physical and emotional strength-- he looks and feels great right now-- with the exception of the bald head one would never know what he is dealing with. The other piece of news is that we are back in NC for a few days. We needed to be together as a family right now and since treatment does not begin until the 14th of April we decided to come home for a few days-- we will head back to the city around Friday. Thank you all for your continued interest, thoughts, and of course prayers. We will continue to need those prayers a while longer as we begin this new course of treatment with the hopes of a cure ahead. I will update with more as the treatment progresses. With love and gratitude, Gina

Friday, March 28, 2003 10:56 AM CST

Hello all: Sorry it has been a while but all is well. We rested on Monday but Tuesday we headed out to Central Park for a Handsome Cab ride (horse and carriage), a stop at the zoo, and to Serendipity’s for Ice Cream Sundays. We had a GREAT day. Then on Wed. we went to clinic and here is the news: Dr. LaQuaglia was VERY VERY pleased with how our boy is doing and was certain he removed all the tumor he could find. So from a surgical/post-op perspective he is doing great. Then we saw the team and the bone marrow test were NEGATIVE (this means the biopsy and the aspirate showed no evidence of disease). This is great news, although there is a chance that there is still disease on the molecular level meaning micro and very little. Anyway this was all very excellent news. The team has decided that they want to do a series of nuclear medicine tests to evaluate where we stand and to make sure there is no residual Neuroblastoma left before they decide what treatment to do next. So on Tuesday he will have a Bone Scan and on Wed. he will have an MIBG scan. Both scans require a radio active Isotope to be injected in Harrison central line; the isotope attaches to any existing Neuroblastoma cells and lights up on the scan. So we are praying for clean scans—it would be such a gift to finally have beaten this disease—Harrison really deserves clean scans. I will not have any news about the results until next Friday (April 4th) and of course I will post them right away. We are all in good spirits and grateful for having come this far. Harrison as you can see from the NEW PICS (the zoo trip) is doing just fine. We are excited about the weekend; Auntie Erin and Emma are coming for a visit and we are going to a B-Day party on Sat. with about 10 of his cousins mostly all his age. It should be a great weekend. I will update again after the test results. Please also pray for our friend Stephen who is supposed to have surgery today on his lung but was running a fever so I as of right now I am not sure what’s happening but I know that he could use our prayers. I hope you all have a great weekend. Love, Gina

Monday, March 24, 2003 6:40 PM CST

Hello everyone: Well, we made it home to the apartment yesterday and Mike made it safely back to NC. Harrison has been doing great and has completely taken himself off all pain meds and only asked for Tylenol once yesterday. He seems to be feeling pretty good and is starting to nibble on some food. We did not go to clinic today; I elected to take the day off so I don’t have any news about the bone marrow or what is to come next. We are going to clinic on Wed. for a surgical follow-up and to meet with the team to discuss the plan for next week. I am guessing more chemo or antibodies. Until then we are going to try and take advantage of the spring like weather (60’s) and have plans to take a carriage ride through Central Park and get some much-needed fresh air. Harrison has been invited to his cousin’s B-day party on Sat. so if he feels up to it we are going to do that too. I will update after clinic on Wed. I am praying that he will not need much more treatment and that we can get to transplant soon, it has been almost one year since he was diagnosed and we are looking forward to wrapping this up and letting our 4 y.o. get back to the important things like playing, seeing his friends, and just plain being 4. Thank you again for all the wonderful notes in the guest book; it helps me not feel so out of touch with everyone. Love, Gina

Saturday, March 22, 2003 4:25 PM CST

Hello everyone: Well, we made it over to the POU at about 7 pm last night. Harrison did well overnight and in fact he is so stable that they have disconnected him from everything, pulled all the tubes and we are getting ready to move to a regular room on the floor. This is a new Harrison record, less than 24 hrs in the POU. They just want to observe him overnight to make sure he is ok with oral pain meds (they took him off IV morphine around 12 pm today) and if all goes well we should get sprung tomorrow. I can’t begin to tell you all how grateful we are for how well Harrison has done after this surgery. I am not sure what is going to come next; I should know something on Monday or Tuesday, but for now we are just basking in the glory of being tumor free and feeling healthy. Love to all and I will update when we make it back to the apartment. Have a great rest of the weekend. Love, Gina

Friday, March 21, 2003 10:11 AM CST

Good morning everyone: Well, Harrison had a good night last night; blood pressure and oxygen levels were stable all night. We have had a few more tubes removed (a peripheral IV line and the Foley catheter)—this is good progress. The rumor is that we are moving over to the POU (pediatric observation unit) at Sloan today, if there is a bed available. We are waiting for the chest x-ray results and if they are good then they will take out his chest tube and that will be the last thing to be removed!!! Harrison is ready to “blow the joint” as he says, he is not a fan of the PICU and wants his private room at the POU—today’s feisty attitude is a good sign. That’s really all that’s happening for now. Thank you for all your wonderful words of kindness and for all the prayers being sent our way. Let us continue to pray for the safety of all those faced with difficult times and to send love and light to our loved ones in the Middle East. We hope you all have a peaceful day and I hope to update you all from the POU!! Love, Gina

Thursday, March 20, 2003 1:45 PM CST

Hello everyone: Well, the latest from the PICU is that Harrison is VENT FREE, YEAH!!! He was extubated around 12:00 this afternoon and is doing fine. The first thing he asked for was his Daddy, then his paci, and then me; oh well I guess I got demoted somewhere along the line, but Mike was thrilled to be #1, I’ll let him have it for now. Harrison is doing really well, he is resting comfortably sucking away on his paci and waking up for short periods of time to chew ice chips and watch “Transformer” movies. So as you can tell other than a major tumor resection, extubation, and a suite in the PICU Harrison has not missed a beat—that’s our boy!!! The atmosphere in NYC is changing with all the news in the Middle East and we are all praying for not only our children but for all those affected worldwide by the struggle abroad. We are hopeful for peace soon. I will update again tomorrow; have a great rest of the day. Love, Gina

Wednesday, March 19, 2003 7:21 PM CST

Hello everyone and greetings from the PICU. Harrison is doing fine—it has been an uneventful day in the PICU and that’s how we like it. They decided to give him one more day on the ventilator to make sure his lungs are strong enough. He has rested peacefully all day and the plan is to see how the lung x-ray looks in the morning and if all is good the extubation is a GO! The docs and nurses here are taking great care of Harrison and everyone seems pleased with his progress. Mike and I are doing fine; we are both so proud of Harrison—he has been so amazing through all of this. He at times is alert enough to answer yes/no questions and he told us that he is not scared and does not have any pain—he is so brave. We are looking forward to what I hope is a peaceful and restful night for Harrison. Thank you again for all the notes in the guest book, Mike and I just finished reading all of them; you have no idea how much it helps to know how many people are thinking about us. Have a peaceful evening. Love, Gina and Mike

Wednesday, March 19, 2003 9:25 AM CST

Good Morning everyone and I do mean GOOD morning. Well I know Erin kept everybody updated throughout yesterday about all the GREAT news and the night went equally as well. Dr. LaQuaglia was VERY pleased with how things went and as of now there is NO tumor tissue left. YEAH!!!! Dr. L said that he looked and looked and found nothing else to remove. We are currently in the PICU and Harrison got an A+ evaluation from the PICU team when we arrived at Cornell Hospital (it is across the street from Sloan) around 9:00 pm last night. He had a restful night and was stable throughout the evening and early morning. They are talking about extubating him today but his blood pressure has been a little unstable so once they are satisfied with those numbers we will work on getting that tube out. And in accordance with Harrison’s fighter instincts he has been alert and answering questions, as of 10:00 pm last night. The docs are thrilled at how alert and responsive he is. We are expecting a good day and I will update soon if anything changes. Thank you all for the beautiful and encouraging notes in the guest book, we have read every single one of them. Your warms thoughts and prayers mean so much to us and we are grateful. Give your little ones an extra hug today. Love, Gina and Mike

Tuesday, March 18, 2003 9:47 PM CST

Good evening all, I mean GREAT evening. I word has arrived and Harrison is TUMOR FREE!!!! Dr LaQuaglia shared the good news around 7:30pm that he was able to get all the remaining tumor around the aorta out. Harrison did well thru the surgery and there was no damage at all to his kidneys. I will let Gina update in more detail tomorrow for right now she is enjoying her best and tumor free boy but I just thought that everyone deserved good news and sweet dreams tonight seeing how hard everyone prayed today. What a pay off! Well HAPPY BIRTHDAY again Harrison. YOU ARE THE MAN.
Auntie Erin.

Tuesday, March 18, 2003 4:44 PM CST

Hello All: It is 5:35pm and we have just received a brief update, all is WELL. Harrison is doing fine as is Dr. L. Thank You LORD. Thanks again for checking on Harrison. We will udate again real soon.
Love Auntie Erin

Tuesday, March 18, 2003 4:28 PM CST

Hello all family and friends. It is Auntie Erin here with a brief update. So far all is well. Harrison had a smooth transition into OR around 2:15 pm (he fell asleep in his stroller) which means surgery will probably start around 3:30pm by the time they finish all pre-op prep. The esitmated time of surgery is around 6 hours but we are not holding that in stone. Please continue to PRAY PRAY PRAY that Harrison gets the birthday present that he truly deserves, to be tumor free by the end of the day. We will update as the news unfolds. Thank you for checking on our beautiful boy.

Monday, March 17, 2003 3:03 PM CST

Hello everyone: We hope you all had as good a weekend as we did. Daddy arrived on Sat., which was also Grandpa’s Birthday (we won’t say how many old he is but it is more than 4 y.o). We went out for a wonderful dinner here in town and spent Sunday lounging around until we went to Grandma’s friend’s house for dinner and a dual Birthday celebration for Harrison and Grandpa. Thank you June and Albert for the lovely dinner and the warm hospitality; and thank you everyone for all the nice gifts for Harrison. We all had a good time. As for today’s clinic visit—the surgery is definitely scheduled for tomorrow at 11:30 am we are expected in clinic around 9:30 am. The CT scan showed that there is NO evidence of new disease (THANK YOU GOD!) and that the remaining tumor tissue that is left is either improved or stable, meaning unchanged. The surgery will focus on the lower portion of the aorta going around the diaphragm and behind the left kidney. This was the tumor tissue that was very difficult to remove back in Oct. and the surgeon, for Harrison’s safety, had to leave it behind. His hope is that tomorrow he will have an easier time resecting that portion of the tumor. Harrison is doing fine. He is in good spirits and seems to be in good shape physically too. Although surgery is always difficult we are confident that we are making the right decision for Harrison. Tomorrow is Harrison’s actual Birthday and Dr. LaQuaglia said to me, “we are doing this on his actual Birthday?” and my response was that I could not think of a luckier or more special day than the one when he came into my life. I told him it was a day of special gifts and this year was no exception to the rule; we are hopeful for a very very special gift tomorrow. Our family wishes to thank all of you for your continued love and support and we will do our best to update the page throughout the day tomorrow. We will mostly likely not have any news before 2 pm. Please pray for Harrison and that God takes good care of him and helps to guide Dr. LaQuaglia’s skilled hands safely and successfully throughout Harrison’s body.
With love and gratitude, Gina and Michael

Wednesday, March 12, 2003 9:20 AM CST

Hello everyone: Well we braved “Chuck E Cheeses” on Sunday and all 21 kids and 25 adults survived, but I am not sure the staff at Chuck E’s did as well!!! Harrison and his friends had a ball, the party was a success; it was so great to see him so happy (SEE PARTY PICS!!!). He is very proud to be 4 y.o. and is telling everyone! We had a great visit at home and really loved seeing all of our friends and family. We are now back in NYC thanks to Corporate Angel and the wonderful host company that flew us up. We are scheduled tomorrow in clinic at 10 am for a check-up and then at 11:30 for a CT scan. This scan will give the docs an idea about how things are going with the piece of tumor that remains on his left side around his aorta (this is what they are going after on Tuesday’s surgery). Please pray that the tumor tissue has further receded or is unchanged and that there is no additional or new tissue to remove. After tomorrow’s clinic we should have off until Monday, when he goes for pre-op labs and we meet with the surgeon to hear the game plan for the surgery. Daddy arrives on Sat. and will stay through the following Sunday. We plan to have a good weekend and have been invited to Grandma’s friend’s house for dinner on Sunday. I will update again after Monday’s clinic visit. Until then have a wonderful weekend with your family. P.S. please say some extra prayers for our friend Jake who is still at CMC. With peace and love, Gina

Wednesday, March 5, 2003 7:44 PM CST

Hello everyone: Well things are going well. I have enjoyed being home and Harrison is beyond thrilled to be back in his house. Or should I say he is thrilled to be practically living at his Aunt Sheila’s house; Mike’s sister, her husband, and my 2 y.o. nephew have moved to Charlotte this past week and Harrison has decided to live with them. Well, not really but he likes to go there EVERYDAY and play; which works for me because I get some time off and he gets some good playing time with his cousin. Everything is fine with us; we are just catching up with friends and enjoying the NON-hospital time. The Big B-day celebration is just around the corner and I promise to post pictures and the details of our “Rescue Hero” themed party complete with Fire Hat and a Fire Truck cake at, yes you guessed it “Chuck E Cheeses” (home to the 4 y.o. birthday party!) Don’t worry I have a case of anti-bacterial wipes on hand and we have lots of good white cells right now!!! Harrison has seen doc McMahon a few times and we may need some red blood on Friday, but that is no big deal in the scheme of things. We are certainly grateful for these healthy days, some of our dear friends are not having as blessed a week as we are and we are asking everyone who visits our site to say some extra prayers this week. Our friend Jake is at CMC; Stephen is at MSKCC and Michael is also at MSKCC. Please send them all peaceful loving light and prayers as they navigate their own incredible and challenging journeys. With love, Gina

Visit our friends and let them know how many people who have never even met them are praying for their good health

Jake's site www.caringbridge.org/nc/hopefor
Stephen's site www.caringbridge.org/sc/stephengolis
Michael's site www.caringbridge.org/page/friendsformichael

Saturday, March 1, 2003 10:53 AM CST

Hello everyone: I bet you all are wondering where we are. Well we are back in good old NC!!! YEAH!!! Let me back up and give you a brief update of our week. We had a mellow last weekend in NYC. Harrison and I baked a lot of goodies (he loves to bake and it is a good indoor activity while he is neutropenic). As a result of our 3 day Betty Crocker Marathon I gained at least 5lbs as did Harrison’s nurses (he always brings them his home-baked goodies), and Harrison gained over 1.5 lbs YEAH!!! We are back up to a beefy 35.5 lbs after being only 33.5 lbs after chemo. Well, Monday and Wed.’s clinic visits went well, only 1 more blood transfusion and 1 more platelet transfusion were necessary (this is GREAT news). On Wed.’s clinic visit (Feb. 26th) the docs gave us the green light to head home and we did not waste one minute. We got back to the apartment at 2 pm after getting platelets and by 4 pm we were in the car and headed home. We drove about 4.5 hours on Wed. night and stayed in a hotel outside of D.C., in Virginia (Harrison loves to stay in hotels, he was thrilled about it-- I think really he likes the free breakfast in the morning!). Anyway we arrived home around 3 pm on Thursday afternoon and boy is it GREAT to be home. We saw doc McMahon yesterday at CMC for labs and Harrison’s counts were great!!! We should be able to stay until the week of March 10th. Harrison has to be back in NYC on the 13th for a CT scan in preparation for the surgery on the 18th. Until then we are going to enjoy our friends and family. Harrison’s social calendar is filling up quick and we are going to have the big B-day celebration while we are at home (I promise to post pictures). Harrison is doing very well, his recovery from this last surgery and chemo exceeded our expectations—our child is such a wonder to us and never ceases to surprise and amaze us with his strength and positive attitude. As for our friends Jake and Stephen; Jake is at home recovering from a tough round of chemo, so please send him lots of love, light, and prayer while his body and spirit work to keep him safe during this time; and Stephen is currently doing an inpatient stay at MSKCC during the post chemo neutropenic stage so please extend that same loving energy to Stephen and his mom Eva as they brave the inpatient stay. Oh yeah, as for Mike and I we are doing fine. I am a little tired from the past 2 months of activity but it is nothing that the love of my family and friends plus a little extra sleep won’t cure. It is really nice to have my whole family together, I did not realized how much I too missed Mike, I never really give myself time to think about it, usually I am worrying about Harrison’s emotional well being and I will tell you that being with his dad is all the emotional therapy this to-be 4 y.o. needs right now!!! And the last piece of exciting news is that Harrison’s aunt Shelia, uncle Brady, and cousin Logan are moving from Tampa, Fla. to NC right near us this weekend and Harrison is thrilled. He is telling everyone that now both of his aunties are going to live right next to him because they love him so much (oh yeah did I forget to tell you that chemo makes you humble!!!). We are really going to have our whole family in NC for the first time ever!!! Well that’s all for now. I will update again in a few days. We hope you all have a wonderful week and don’t forget to tell your family how much you love and cherish them. Love, Gina

Saturday, February 22, 2003 8:08 AM CST

Hello everyone: Sorry I have been a slacker and not written in a while but our wishes have come true and it has been an uneventful week so there has not been much to report, YEAH!!!!! We have escaped fever and have had routine checkups at clinic. On Wed. he needed blood and on Friday we got platelets, this is all normal post-chemo activity. His white cell count is only .1 so we are camping out at the apartment this weekend (you can’t exactly go to the mall with a WBC of .1 and it’s pouring rain so outdoor activities are limited) so we will make the best of the Toys R US subsidiary in the apartment better know as “Harrison’s room” and stay busy playing games and watching movies. Even though we are midstream of post-chemo neutropenia (that means low cell counts and increased susceptibility to infection) he is doing GREAT. We have been blessed with a good round of chemo, whatever that means, and he has felt good the last two weeks. He is eating, sleeping, and playing and boy are we grateful; even doc Kushner thought we were due for an easy time of it. Anyway, cell counts should be on the rise by Monday (I hope) and we are trying to get home for a few days before we have to be back on March, 13th for the next CT scan in preparation for the March 18th surgery. We are asking our friends and family to focus their prayers on some of Harrison’s friends who are having a tougher time than us right now. Most of you know Jake our 4 y.o. friend, who is also treated at Sloan and CMC. Please send lots of love and prayers to Jake and his parents, Chanda and Brian; his surgery has been postponed again and he is currently at CMC receiving a strong round of chemo. Jake’s page: www.caringbridge.org/nc/hopefor stop by if you have time and leave them a note I know they would love to hear words of encouragement right now. Also our friend Stephen is just finishing a round of chemo so pray that he stays safe from infection and that he has an easy time on Tuesday when they take the stiches out of his leg. You can visit Stephen at www.caringbridge.org/sc/stephengolis. Thank you all for checking in on us, we are eternally grateful for all of the love and inspiration you send to us and our friends facing their own amazing journeys. Our family wishes yours a peaceful and loving week. Love, Gina

Tuesday, February 18, 2003 3:42 PM CST

HELLO and LET IT SNOW…LET IT SNOW…LET IT SNOW… Well snow and snow it has. We got dumped on and other than the rough drive to clinic on Monday it has been great fun to experience all the snow. I think Harrison and I are enjoying the snow so much because Daddy is snowed in with us and cannot seem to get a flight home, YEAH!!! Harrison is doing fine. He has really enjoyed Mike, who has been here since Thursday. He seems to be feeling fine and is eating and sleeping pretty well too. We again are hoping for an uneventful week and praying for NO FEVER. We are headed to clinic tomorrow to check cell counts and get checked out. We are hoping to head home to NC perhaps as early as next week if all goes well; we would like to get home for a week or two before March 18th (the next surgery date). Harrison’s 4th Birthday is March 18th so we are going to try and celebrate at home earlier than the actual date. Thanks for stopping by and we hope wherever you are you are warm and cozy or out building the world’s largest SNOWMAN!!! Have a GREAT week. Love, Gina

Wednesday, February 12, 2003 6:37 PM CST

Hello everyone: Well, the last time I updated was on Monday evening and at time (around 9:00pm) all was well, Harrison was sleeping, no sickness, and I was hoping for an uneventful evening. Well our evening was anything but uneventful. Around 10:00pm I headed for bed and all of a sudden Harrison’s home IV pump (we go home with IV fluids during chemo week) started to go crazy and just shut itself off after making some very bizarre noises. So I immediately called Urgent Care at MSKCC and they said I had to come in and get a new pump. Well this also meant I had to pull Harrison up out of bed because he was attached to the pump. So Harrison, mom, and me trucked back into the city at 10:30pm for a new pump. It was really important that Harrison get hydration over night because one of the chemo drugs he received was Cytoxan and this drug can have adverse side effects on the bladder (bleeding of the bladder to be precise) and the fluids keeping him urinating frequently so the Cytoxan does not sit in his bladder and kidneys, in addition to the fluid he also receives an IV drug called Mesna with the overnight pump, which is a bladder rescue med that protects his bladder from the Cytoxan, so you can see which I hightailed it to Urgent Care. Anyway we were there until after 2:00 am. They gave him lots of fluid while we were there and checked his urine before we left and everything was fine. We have received 5 rounds of Cytoxan and Harrison’s bladder has had no trouble, Thank God. So that’s my long Monday night story. So after mom and I caught about 3.5 hours sleep (Harrison slept both car rides and the 3 hours in Urgent Care, I was grateful) we got up to head back to clinic at 7:00 am for Tuesday’s round. Harrison had a little tougher day yesterday and was sick once but that’s pretty good considering the high dose chemo he is getting. We got home around 6:30 and he and I went to bed around 7:30 pm (I was wiped out) and slept until 6:30 this morning if you don’t count the 4 trips to the bathroom, 4 cries for something to drink, and 2 lost pacifier episodes in the middle of the night. But today was a MUCH BETTER day!!! We only had a 1-hour chemo and some hydration so we were home by 2:00 this afternoon and he is feeling really good (no nausea or sickness!!!!) YEAH!!! The next 2 days should be the same as today and that would be great. Well sorry to ramble on but for now this is the news of the day. Mom, Dad, and I are doing ok too. We usually are doing well when Big Boy is. Mike is coming in tomorrow night and Harrison is so excited and I am grateful for the relief pitcher. Thanks for stopping by to check in on us. Sometimes the news is not so exciting and sometimes not so pleasant but I hope it at least helps you all understand what things are like for Harrison. It also really helps me to be able to share our experience, I think, for me, there is real therapeutic value in writing so when I say thank you for stopping by I really mean it, Thank you for taking the time to read about our lives. As always, with love and gratitude, Gina

Monday, February 10, 2003 8:56 PM CST

Hello All: It has been a few days since I updated. The rest of last week was pretty good. We took it easy and rested and then ventured out this weekend to the mall and to Target for Valentine goodies. Harrison has felt pretty good physically (despite the diet of “tootsie rolls” and “Hershey’s kisses”) over the last few days but has been what I call “emotionally challenged.” This means that he has been very moody and has clung to my side like glue. Some days have been harder than others but we are making it ok. Today was Day 1 of chemo (it’s a 5 day course) and so far so good. It has been a really long day (10 hours in clinic) but Harrison really did great. As this point there has been no nausea or diarrhea and we are grateful; he actually ate McDonalds pancakes and sausage for breakfast and pizza for dinner!!! He is sleeping now and I am praying for a restful and non-eventful evening. We are headed back tomorrow for another long day but Wed. Thurs. and Friday should be shorter because we only have one drug on those days as opposed the two we had today and tomorrow. Well that is most of what is going on here. I will update again later in the week. Thank you for all the positive thoughts and prayers.
Our family wishes yours a peaceful and happy week. Love, Gina

Wednesday, February 5, 2003 3:46 PM CST

Hello everyone: Well we made is back to the apartment and all is well. We saw Dr. Kushner before we left the hospital yesterday and although the bone marrow news was a bummer he is “pleased as punch” about how the surgery went and is thrilled with how well Harrison is doing recovering from the operation. And although we were disappointed to hear about the marrow we have not lost ground we simply have not gained as much as we thought. All in all the docs are really pleased with how things are going and you all are right when you leave us notes that say Harrison is a fighter and remission is just around the corner—he is a miracle and we could not be prouder of his progress and how well he handles all of this; so thank you for all the wonderful words of encouragement and prayers. For now we are just taking it easy, doing some resting and playing with all the “KOOL” toys that everyone sent him before the surgery. The plan is to do chemo on Monday (it’s a 5 day course) and then relax over the weekend. Mike is flying up next week (Feb 14th) and Harrison is looking forward to that. After Harrison recovers from the chemo (about 4 weeks) they plan to do another surgery on the left side. I know this sounds tough but it is actually really good news that the docs feel so encouraged about getting out that last piece on his aorta; then after that they are thinking about the 3F8 antibodies (I’ll explain more about that as the time gets closer) and then perhaps it will be transplant time (around May or June). Well that’s all for now, and that’s enough. I will update again soon. Thank you, as always, with love and gratitude, Gina

UPDATE ON MY FRIENDS:
Stephen is doing great. The tumor they removed, along with the lower portion of his leg was all DEAD tumor cells. This is WONDERFUL news for him. The surgery on his lungs is this Thursday (tomorrow). Please pray for him; he has been through so much. Feel free to leave him and his family some words of encouragement on his web site. They are a great family and have been so supportive to us since we have met them.
Site: www.caringbridge.org/sc/stephengolis

The JAKESTER’S surgery has been postponed until Valentine’s Day. Jake has a viral infection that has caused his platelets to drop so surgery is delayed. Please pray for Jake’s platelets to recover and for there to be no further delays for him.
Site: www.caringbridge.org/hopefor

HAVE A BLESSED AND PEACEFUL DAY!!!

Monday, February 3, 2003 8:34 PM CST

Hello everyone: Sorry I have not written in a few days but it has been somewhat of an emotional time for us. Harrison is doing well and I think we are getting sprung tomorrow. He still has some fluid around the lung area but it is much better and he has been doing a lot of walking around the floor and that has helped. We did get some news that took us back some—the bone marrow tests that they did the day of surgery is showing that there is some neuroblastoma still in Harrison’s marrow. As you all know we thought as of Dec. 1st that Harrison’s marrow was clean but that is not the case. Dr. Kushner is sure that this is NOT new disease and that it just did not show up in the last sampling. This was very difficult news to hear. Anyway the plan is to get out tomorrow and have a few days back at the apartment for recovery and then start a round of chemo on Monday next week. The plan is to do another surgery after that round of chemo to try and remove the small piece of tumor they had to leave around Harrison’s aorta during the Oct. 11th surgery. This should take us well into March and then we will just have to see what comes after that. So once again Harrison needs our love, thoughts, and prayers. Thank you all for stopping by to check on him and for all the loving words of encouragement. With love, Gina

Friday, January 31, 2003 at 04:53 PM (CST)

Hello everyone: Well we made it over to the POU (Peds Observation Unit) today. The transfer went very well, Harrison is looking forward to telling people about his ride in the back of the ambulance. He is doing well but still having some lung trouble; now the right lung has some excess fluid, which in turn is causing him to still be oxygen dependent. They are giving him some special breathing treatments in addition to the usual breathing therapy. They took out the rest of his tubes today (the Foley catheter and the chest tube) and he tolerated that very well. This is especially good for me because now I can crawl up next to my “little pumpkin” in the bed (YEAH!!!) and give him lots of good cuddles. And the other good news is they are allowing him some solid food and the meal of choice tonight is “Corn Pops” cereal, we are patiently waiting for the delivery from room service. Well that is about all the exciting news I have for today. We are actually hoping for an UNexciting and boring evening and that Harrison is able to get some good rest tonight. We appreciate you all checking in on us and we enjoyed reading the latest entries in the guest book. So until tomorrow’s update… Have a peaceful evening, with love, Gina

Thursday, January 30, 2003 at 09:10 PM (CST)

Hello everyone: Sorry it has taken me so long update but it was a long night last night and a long day today. Harrison is doing ok but has been struggling with his oxygen levels on and off since last night. Around 1:00 am some of the air sacs in his left lung collapsed and at one point they had considered re-intubating him but he became more stable and is just on some extra oxygen right now. They are working on getting some fluid off both lungs and are please with his progress thus far. He is stable enough to be transfered to the POU (Peds Observation Unit) at MSKCC and we should be able to go sometime tomorrow. He looks great; his coloring is good and he is very alert and talking. He was mad tonight when he asked for something to drink and eat and I had to tell him no. They are only allowing him ice chips right now (he was not a happy camper, he told me that ice was NOT food). I like it when he gives me a hard time, it's always a good sign. Otherwise all is well. I stayed last night with him so Mike is staying tonight, it is best for us to take turns in the PICU because you really cannot sleep in there. I will update tomorrow, hopefully from the POU. Thank you again for all of your beautiful thoughts and prayers, God is hearing and answering. We are so thrilled to be this much closer to recovery. Harrison is such a wonderful little boy and we are so grateful to share his life and his journey.
Until tomorrow, have a peaceful evening, with love, Gina.

Wednesday, January 29, 2003 at 09:46 AM (CST)

Wednesday 6:00 pm update:

Well Harrison continues to do well. He was extubated around 3:30 this afternoon and is doing fine on his own. He is asking to go home-- this is a good sign. Thank you again for all the wonderful words of encouragement and support, Mike and I have really enjoyed reading the guestbook today. We are praying for a peaceful night. We will update again in the morning. Love, Gina

Hello everyone: I am writing to you from the PICU at Cornell across the street from MSKCC. Harrison is doing very well. As you know from the update last night the surgery was a success and the entire tumor, on the right side was completely resected. Harrison rested comfortably throughout the night. Mike stayed with him while I caught some much-needed rest back at the Ronald McDonald house. He is breathing well above the ventilator so the plan is to get him extubated sometime today, and usually the rest of the tubes come out quickly as he recovers. He is considered medically very stable and doing well. He opens his eyes now and then and is responsive to my voice and is able to nod yes and no to questions. He is so remarkable and we are so grateful to Dr. LaQuaglia for his skills and to you all, our friends and family for the amazing amount of prayer and love that you so unconditionally share with us. I will update again later today when we have more news…until then, thank you and have an extraordinary day; we plan to. As always, with love and gratitude, Gina.

Tuesday, January 28, 2003 at 06:54 PM (CST)

Hello all you Harrison fans its Auntie Erin and Aunt Sheila here with the update because Gina and Mike are back in recovery with BEST BOY YEAHHHH!. Harrison did GREAT thanks to all your prayers. As Gina mentioned in her earlier update the tumor resection began around 12:00pm and ended extremely successfully around 4:00pm(three hours less then expected). Dr. Laquaglia came out around 5:15pm with the most awesome news ever. He was able to resect 100% of the tumor on the right side(which included a piece around the aorta, a piece behind the kidney and a piece on the spinal cord). Dr. L was quoted as saying “it went better than expected”. From the way it was described to all of us, the last two rounds of chemo loosened the tumor enough that Dr. L was able to “peel” it away with more ease than the first surgery. Sheila and I hope that this wonderful news brings the tears of joy and big smiles to all your faces as it has done ours. Harrison is headed over to the PICU across the street at Cornell and will remain there for we don’t know how long. You know Harrison never ceases to amaze any of us and could be moved back over to MSKCC step down unit sooner than later. Well I am sure that Gina or Mike will update you all again tomorrow until now they are enjoying being close to Harrison. Harrison’s family thanks everyone for all their kind thoughts and prayers. Have a pleasant evening, with love Auntie Erin and Aunt Sheila.



Tuesday, January 28, 2003 at 06:29 PM (CST)

Tuesday, January 28, 2003 at 11:31 AM (CST)

Hello everyone: Well it is about 12:30 pm and surgery is underway. So far all is going well. They have done the bone marrow tests, put in his new central line (catheter) and have started the incision for the resection. We are looking at about 8 more hours give or take. Harrison was nervous going in but did great. Now it is just a matter of waiting and praying. Thank you all for checking in on us and PLEASE keep PRAYING!!!! We will update again later this afternoon (after 4 pm or so). As always with love and gratitude, Gina and Mike.

Monday, January 27, 2003 at 04:31 PM (CST)

Hello everyone, Well clinic went fine today and all is a go for tomorrow (at this point anyway). Surgery is scheduled for 9:00 am; we need to be at clinic at 6:30 am (YIKES!!!). Daddy and Harrison’s 2 aunties, Auntie Erin and Aunt Sheila, arrived tonight around 4:30 pm (YEAH!!!!). So we will all spend the evening playing and loving on Harrison. The surgery will be a long and difficult one. This time the Dr. will go in on the right side of Harrison starting behind his right kidney to remove a piece of tumor imbedded deep in his abdomen and then he will travel up removing tumor all the way up to Harrison’s heart (it again is wrapped around his aorta). Then he will go after some lymph nodes up high in the chest cavity (WHEW!!!) it’s a lot to accomplish in on day—please pray for God to keep Dr. LaQuaglia safe and guide his hands safely through Harrison. We will update throughout the day tomorrow as we receive information from the O.R. Thank you for all of your love and concern. We are confident that this surgery will be successful and that we will be one step closer to a full remission very soon. Until tomorrow… JUST PLEASE PRAY. With love and gratitude, Gina

Sunday, January 26, 2003 at 06:49 PM (CST)

Hello everyone: Hope everyone is enjoying the SuperBowl tonight. We have been not only enjoying the game but the whole extra week we have been given. On Wed. afternoon we picked up Jake and Chanda and hit the BIG Toys “R” Us in Times Square—the kids had a blast—and later we played at Ronald McDonald House and ordered out Chinese food. On Thursday we drove back into the city and picked up Jake and Chanda to come and spend the night at the apartment with us. Check out Jake’s page for the cute pics of the evening (www.caringbridge.org/nc/hopefor). On Friday we took them back to clinic—Jake’s test results were really good. No new growth!!! Thank you for all the prayers. I also got a chance to visit with Stephen and Eva on Friday. Stephen is doing great!!! He handled the surgery like a champ and Eva says his spirits are good. On Sat. we just chilled out and much of the same today. Harrison has really enjoyed the time off playing with his friend Jake and enjoying some new toys. We are due in clinic in the a.m. to get the final word for Tuesday and for some blood work. I will update again tomorrow night once I have the details for Tuesday. Thank you for all the prayers for Harrison and his friends—so far everyone is doing great. Love, Gina

Tuesday, January 21, 2003 at 01:56 PM (CST)

Hello everyone: Well I have an interesting update for you all; Surgery has been cancelled for today. We went to the hospital today and around 12:30 when we were supposed to go down to the O.R. Dr. LaQuaglia (the surgeon) came and found us to say that his morning procedures were running about 3.5 hours behind and that he would not be able to start Harrison until around dinnertime. Given the anticipated length of the surgery and its complicated nature he thought it was better to reschedule it. The next available date for that length surgery is not until NEXT Tuesday, Jan. 28th. So here we are again just hanging out. Harrison, of course was thrilled with the news and immediately asked if he could go to the hospital cafeteria and EAT, poor kid was desperate and starving!!! We are all ok with the change in plans. It is the safest and best thing for Harrison and we are grateful for how much concern and care goes into these decisions. We have tremendous faith that everything happens for a reason and that he will be kept safe through divine power until the time comes for the surgery. We are not needed back in clinic until next Monday but we have decided to stay up here and just enjoy the time off. Our friends Jake and Chanda are here and we are thinking about hitting the BIG Toys “R” US in Times Square with the kids tomorrow. Please continue to pray for Jake and that his tests reveal NOTHING new. Also please don’t forget our friend Stephen; his surgery is on Thursday. Both families need our love and prayers. Thank you all for the loving notes you have all written in Harrison’s guest book; you don’t know how much you all mean to us. I will update again if there is any new or different info. But until then I guess we will continue to shop, eat, and play our hardest until next Monday. With love, Gina

Monday evening update:

Today we met with Dr. LaQuaglia and the surgery will be around 12:30 tomorrow afternoon. We initially thought that they would be working on Harrison's spine area but that has changed. They will be going in the right side of his chest and working behind his heart again and in the abdomen area near his right kidney. The most recent CT scan shows that the spinal area is responding to chemo and they are going to leave that area alone for a while and see if it continues to improve (YEAH!!!!!). The surgery will be as serious and as long as the first (he expects it to be another 10 hour day). We will update the site as we get updates. Thank you all for all of your wonderful and loving notes in the guestbook. We are truly grateful for all of the prayers. Tomorrow will be a tough day but we are all ready for it. Harrison is a little nervous but all in all he is in good spirits and great physical condition. Thank you for your continued prayers for Harrison and his friends. Love, Gina
P.S. Check out the new pictures!!!




Sunday, January 19, 2003 at 11:37 AM (CST)

Hello everyone: Just a brief note to let you all know that we are doing fine. Harrison is in great spirits, especially since his Dad arrived yesterday. They have been playing round the clock and really enjoying each other. Harrison’s Aunt Sheila arrives tonight and his Auntie Erin tomorrow. Our friends Chanda and Jake will also be heading up to MSKCC tomorrow; Jake has several tests scheduled for the week. Please help us all pray that Jake’s tests remain “clean” with no new growth. Our friend Stephen’s surgery has been rescheduled for Thursday, please remember him, also, in your prayers this week. We have clinic in the am and will meet with Dr. LaQuaglia to discuss the details of the surgery and I will update you all tomorrow evening. Thank you so very much for all the love, light, and prayers that you all unconditionally continue to extend to our family and the families of all our friends affected by the hardships of this disease.
In love and Peace, Gina

Stephen’s web site: www.caringbridge.org/sc/stephengolis
Jake’s web site: www.caringbridge.com/nc/hopeforjacob

Tuesday, January 14, 2003 at 09:33 AM (CST)

Hello everyone: We hope you all had a good weekend, we certainly did. We had a great time seeing our family and friends and eating great food. Monday’s clinic visit went fine. The CT results showed that the tumor situation was either “slightly improved or stable” which in the world of Neuroblastoma is a good thing. This means that there were no surprises and things looked the same or better in some cases. Dr. Kushner was thrilled to see how well Harrison looked (weighing in at a hefty 36.5 lbs [a 5 lb gain since Christmas]) especially considering the how hard the month of Dec. was on him. The surgery has been rescheduled for next Tuesday, Jan. 21st. Until then we have the week off!!!! YEAH!!!! So we will continue to fill our days with shopping, playing, and eating (sounds good to me). Harrison is doing GREAT! And so far, for him, there is little stress associated with the surgery. Mike is arriving on Sat. and will stay through next week. I saw my friend Eva in clinic, her son is Stephen (www.caringbridge.org/sc/stephengolis) and he too will be having surgery on Tuesday. It is a very serious surgery for Stephen, so as you pray for “Big Boy” please extend your prayers to include Stephen. I will update again after clinic on Monday, we will have the details of the surgery then. Thank you for stopping by and checking on us. We hope you all have a loving and peaceful week. Love, Gina

Friday, January 10, 2003 at 09:28 PM (CST)

Hello everyone. Well I have an interesting update for you all. We have had a scheduling change and the surgery has been cancelled for Tuesday, Jan. 14th. This is not due to Harrison or his condition but rather a personal family emergency of Dr. LaQuaglia’s (the surgeon). It has not been determined when it will be rescheduled for, so for now we are in a holding pattern. We will go to clinic on Monday to see doc Kushner and get the results of the CT scan we had on Wed. this week. Please keep Dr. LaQuaglia and his family in your prayers. As for “Big Boy” he is doing great. He is still eating like a pregnant woman having twins and running us all ragged (we would NOT have it any other way). We have been doing some shopping, having dinner with friends, and generally taking it easy the last few days. So for now we will just wait for Monday and see what the new plan will be and in the meantime we have plans over the weekend with more friends and family for dinner and play. Thanks for stopping by and please continue to pray for all of our precious children. I will update again after clinic on Monday. Have a GREAT weekend! Love, Gina

Tuesday, January 07, 2003 at 07:24 PM (CST)

Hello everyone: Well, we made it safely to what Harrison affectionately calls “the new apartment.” The trip up was smooth sailing thanks to Corporate Angel and the generous companies that share their flights. All is well here and Harrison is in full swing. He was excited to see all the toys that we left here not to mention the suitcase of new ones he made me cart up here. We saw doc McMahon when we were home and Harrison is up about 4 lbs (YEAH!!!!!). Tomorrow we have clinic (CT scan) and the docs will determine the details of the surgery, which is scheduled for the 14th. Not much else to report for now. I will update again when we have more info about the surgery. In the meantime please pray for our new friend Michael Romano
(www.caringbridge.com/page/friendsformichael) who is currently in transplant at Sloan and for our little pal Jake who is doing great and coming up soon for scans to show the docs how great he is doing; and please pray for all the children who need it, there are so many I could not list them all it makes me realize just how grateful I am to have this time with Harrison, he is bouncing off the walls, eating, playing, and having fun and we love it. Thank you for all the wonderful emails and notes in the guest book. Our family wishes that you, too, have a great week. Love, Gina

Tuesday, December 31, 2002 at 07:59 PM (CST)

Hello everyone: We hope you all had a wonderful holiday and a happy New Year. We finally made it home to NC on Friday, Dec. 27th, and celebrated our Christmas Eve that evening, thanks to Auntie Erin, Uncle Rich, Aunt Sheila, and Uncle Brady; they all did a great job putting together a very special holiday celebration for us all. Santa made his rounds and of course Harrison racked up; we may have to build an addition onto the back of the house for all his loot. Actually Harrison will be donating several of his last year’s toys to the playroom at Carolinas Medical Center. If anyone has toys that are in good condition but they no longer need or want please consider the Children’s Hospital at CMC; they will gladly take any toy that is cleanable (no fabric or stuffed animals). I would be glad to collect the toys and deliver them, so email me if I can help. Harrison is doing great. We had a rough month but in the end he rebounded, as only Harrison can, and is now in full swing back doing construction work round the clock in his playroom. They were, in the end and after 3 harvesting sessions, able to collect plenty of stem cells for transplant; and we of course were grateful for this. We will continue to enjoy our time off until we must return to NYC on Jan 7th. Harrison is scheduled for tests on the 8th and surgery is scheduled for Jan. 14th. This surgery will be to remove the soft tumor tissue that remains in the spine area. We know that this New Year will be a year of blessings for our family. We have been so fortunate for how well Harrison has done so far but we will continue to ask our friends and family to pray and hold Harrison in love and light; and we will continue to pray for God to keep Harrison safe as we continue this journey into the New Year. Our family is so grateful to have all of you caring for us. May this New Year be one of love and peace for your family and may you feel as blessed with your journey as we do with ours. Happy New Year! Love, Gina

Tuesday, December 31, 2002 at 07:59 PM (CST)

Hello everyone: We hope you all had a wonderful holiday and a happy New Year. We finally made it home to NC on Friday, Dec. 27th, and celebrated our Christmas Eve that evening, thanks to Auntie Erin, Uncle Rich, Aunt Sheila, and Uncle Brady; they all did a great job putting together a very special holiday celebration for us all. Santa made his rounds and of course Harrison racked up; we may have to build an addition onto the back of the house for all his loot. Actually Harrison will be donating several of his last year’s toys to the playroom at Carolinas Medical Center. If anyone has toys that are in good condition but they no longer need or want please consider the Children’s Hospital at CMC; they will gladly take any toy that is cleanable (no fabric or stuffed animals). I would be glad to collect the toys and deliver them, so email me if I can help. Harrison is doing great. We had a rough month but in the end he rebounded, as only Harrison can, and is now in full swing back doing construction work round the clock in his playroom. They were, in the end and after 3 harvesting sessions, able to collect plenty of stem cells for transplant; and we of course were grateful for this. We will continue to enjoy our time off until we must return to NYC on Jan 7th. Harrison is scheduled for tests on the 8th and surgery is scheduled for Jan. 14th. This surgery will be to remove the soft tumor tissue that remains in the spine area. We know that this New Year will be a year of blessings for our family. We have been so fortunate for how well Harrison has done so far but we will continue to ask our friends and family to pray and hold Harrison in love and light; and we will continue to pray for God to keep Harrison safe as we continue this journey into the New Year. Our family is so grateful to have all of you caring for us. May this New Year be one of love and peace for your family and may you feel as blessed with your journey as we do with ours. Happy New Year! Love, Gina

Monday, December 23, 2002 at 06:09 PM (CST)

Hello everyone: I am just going to write a short update tonight. Things are going well; Harrison is feeling better everyday. The stem cell collection went well today (Harrison did fine) but we will not know if they got enough for a transplant until the morning because we finished so late the lab closed. If we collected enough then we are going to be discharge tomorrow (YEAH!!!!!) and hopefully I can convince them to let us leave for NC. We placed a special request for Santa to come a day or so late this year so we can have Christmas at home under our own tree; and of course he agreed. I must again say thank you for all of your wonderful words of kindness and love. Our family hopes your holiday overflows with health, peace, love, and blessings, for we have truly learned what it is to be thankful for God’s blessings. Peace and Love to all and Happy Holidays from our hearts to yours.
Love, Gina

Saturday, December 21, 2002 at 11:58 AM (CST)

HE IS BACK…!!!!!! Harrison is sitting in front of me drinking chocolate milk watching cartoons and asking to go to the playroom. The docs are thrilled with the progress he has made in the last 36 hours and today his white cell count is 3.8!!!!!!!! Harrison is doing this, on his own and will not need Grandpa’s cells (YEAH)! The docs are going to continue him on antibiotics for the time being and we are still going to be on schedule for Harrison’s stem cell collection on Monday or Tuesday. The stem cell collection will be for the bone marrow transplant in a few months. After Monday or Tuesday they will assess if Harrison will be fine for oral antibiotics and then we should be able to head home (either back to NJ or NC we are not sure). I am so grateful to be able to share such good news with you all; it is your love and prayers and Harrison’s strength that have helped us get through this. I will continue to keep you all updated but I must go now because we are off to the playroom. With love and gratitude, Gina

Friday, December 20, 2002 at 11:48 AM (CST)

Hello everyone: I have very good news to share today. Harrison had a very peaceful night and the transfusion results are good. Harrison accepted the cells and it raised his WBC to 0.9!!! Although this is the result of Mike’s cells Harrison’s body is doing a great job using them to fight the infection and the docs were most impressed this morning with the “VAST” improvement at the site of the infection (YEAH!!!!!) They feel strongly that Harrison is turning the corner to recovery. The docs told Mike they were glad he could help and he replied that he was honored to serve Harrison; I am so proud of my whole family. Today they will give my Dad the high dose GCSF (he too is the same blood type as Harrison) just in case Harrison needs cells tomorrow but they will not determine that until his labs come back in the am. My sister few in last night and she was screened this morning as a potential donor if we should need more (her blood type is used as a universal donor), however, the docs are confident that Harrison will not need many more transfusions. In addition to this Harrison has not had a fever in more than 24 hrs and is awake and alert today watching movies and chatting. I am so grateful to all of you who have held Harrison in love, light, and prayer over the course of the last few days. I would like you all to know that Mike and I feel strongly that you were all part of the healing process for our child; I wish there was more than just thank you. We are blessed to have all of you. We hope that your kindness comes back to you ten fold and that you all have a loving and peaceful Holiday and everyday. Love, Gina

Thursday, December 19, 2002 at 05:48 PM (CST)

Hello all, well here is the latest; All went well with the harvest from Mike (Mike is fine) and Harrison received the transfusion around 3:00 pm. They watched him very closely during the 1-hour transfusion and he experienced no side effects. He again has slept most of the day and his chest (the infection site) looks much better as the day goes on. We do not know what the artificial WBC is right now, they will most likely do labs in the middle of the night. The plan is to give him another transfusion in the morning around 8:30 am (they were able to get enough from Mike for 2 transfusions). After that they will watch him to see if he produces white cells on his own over the weekend. Harrison seems to be doing ok and all the sleeping is not such a bad thing (I am hoping he does not remember most of this stay) it allows his body to get the rest it needs to heal. So many of you have left notes on his site today and we really appreciate that. I know that you all will continue to pray for Harrison and his white cells. Thank you. Love, Gina

Thursday, December 19, 2002 at 08:03 AM (CST)

Good morning everyone: I want to thank you all from the bottom of my heart for the love and prayers that have been pouring out for Harrison and our family; you can’t possibly know how much that means to all of us. Well here is the latest; the infection has not spread any further and all the measures we have taken (prayer, love, energy work, and antibiotics) have worked as a good team to keep the infection from the blood stream and we are very grateful for this. His chest area is showing some improvement, his fever is trending downwards (this is good) and we have controlled some awful diarrhea. This is all the good news. Harrison’s white cells are at 0.1 today which is good because it’s not 0.0 but he does still need the transfusion. Mike turned out to be the best match so he received his high dose GCSF shot last night (this helps you produce a high white cell count) and he has gone down to the blood bank to be harvested. This process should (if all goes well) take about 1.5 hours. We should know something by around noon and hopefully Harrison will receive those cells later this afternoon. Harrison is sleeping most of the day lately; I think his little body is just fighting it’s hardest against this infection so he needs extra rest. We are controlling the pain from the infection with small amounts of morphine and that seems to help him stay comfortable. We are graciously asking everyone to pray for Mike’s white cells and for the transfusion to do what it needs to in order for Harrison to recover. I will update again later this afternoon and thank you again for all the love, prayers, and support. Love, Gina

Tuesday, December 17, 2002 at 02:44 PM (CST)

Hello everyone: Here is the latest from the hospital. Harrison has a very serious infection, in fact, at this point it is life threatening for him. The problem is that even though he is on antibiotics they are not very effective at this time because the infection is in the skin tissue of his chest. It does seem to at times be getting worse so today he underwent a surgical procedure to try and cleanout the area under his left breast from infection but it was not effective. The real problem is we need him to start to produce white blood cells to help his own body fight the infection. Harrison’s counts are very low, he has 0.0 white cell count and is receiving blood and platelet transfusions almost daily. At this point we are going to resort to a somewhat unusual technique of transfusing white blood cells. The docs here do not do this often but Harrison’s case is serious and we desperately need to do something. So the plan is for Mike and my Dad to have high dose GCSF injections in order for them to produce high white cell counts, then they will be harvested for white cells; this requires them to have rather large IVs placed in each arm and hooked up to a machine that will pull the white cells from their blood. Hopefully if all goes well we will be able to give Harrison those cells on Wed. night or Thurs. morning. I will not as of yet be a donor because the adult will often experience bone pain, nausea, and flu like symptoms and I have to be able to take care of Harrison. If Dad and Mike are compatible with Harrison they should produce enough for his transfusions. The idea is to artificially help give Harrison’s body white cells to FIGHT FIGHT FIGHT this nasty and serious infection. Everyone has been so kind here, several of the nurses and docs have offered to be harvested if we need more or a better match (apparently white cells are not stored and need to be found through donors) but Mike should match. At this time we are asking everyone to lift Harrison with light and love and pray, pray, pray that he stays strong until we can give him white cells. Our family also wants to thank all of you who have stopped by the site and shared such loving thoughts, prayers, and support. I will update again when we have more news.
Love, Gina

Saturday, December 14, 2002 at 11:38 AM (CST)

Hello everyone: Sorry it has been so long since I have updated but we have been busy with Harrison. Last weekend as I wrote was great. On Monday (Dec. 9th ) we went to clinic to have his counts checked and we needed blood, no big deal, we were home for dinner. We had the day off on Tuesday, Harrison and I hung around the apt, played and napped while Grandma and Grandpa did some Christmas shopping. On Wed. (Dec. 11th) we had clinic again to check labs and as it turned out Harrison showed the beginning signs of a central line infection (YIKES, this is a bad bad thing). They ran some IV antibiotics in clinic and let us go home because he had no fever but they wanted us to return in the morning so they could reassess it. Well we went back to the apt only to have his docs call at about 5:30 pm saying that they changed their minds and could we come back to be admitted for more IV antibiotics and they wanted to remove the line first thing Thurs morning. So we ate dinner and trucked back into the city and got admitted. They took out the line Thurs morning and put in a temporary one on the other side of his chest. They thought we could go home after some more antibiotics but then changed their minds again because Harrison’s white cell count was 0.0, which means he would be unable to fight an infection without help. We went without fever until yesterday (Friday) and it spiked to 104.4 (YIKES) so they have tripled his antibiotics and this brings us up to date. We are just sitting and waiting for the antibiotics to work and for his counts to go up so that his body is able to do some fighting on its own. Other than all of this we are well. Harrison is tired and sleeps often but he is otherwise in good spirits. He desperately wants to get out of the hospital and we are hoping his counts will start to recover by the beginning to the middle of next week. We are still on schedule for stem cell harvesting next week and the plan is still to come home for Christmas. Harrison requested that his whole family be together when Santa comes (I almost cried when he said that), he wants to have his cousins Emma and Logan over to play with all the new toys. So I am on a mission to get out of here and grant my baby’s wish to be in NC for Christmas. Please help me by praying and sending love and light so Harrison recovers soon. As for the MRI they are still in debate about the surgery. They have not decided what they are going to do, hopefully we will meet with the surgeon soon to discuss the options. But for now the plan is to take it day by day and get him well. Sorry this is so long but I wanted to let you all know the details of what’s happening. Mike arrived last night and he has been by Harrison’s side constantly. He will stay until Monday morning, and I am grateful for the relief pitcher. The last bit of really wonderful news I will share is about our friend Jake Courtney. He had his scans this weekend and they looked GREAT!!! No new tumor tissue (YEAH!!!) Please continue to pray for Jake and Harrison and all the children who need it, miracles do happen, I fully expect to have one for Harrison. That’s all for now and I will update again when our situation changes. Thank your for all your continued prayers and support. Please sign in to the guest book if you visit our site, reading your words of love and encouragement are really helpful for our family during times like this. Love, Gina

Saturday, December 14, 2002 at 11:34 AM (CST)

Hello everyone: Sorry it has been so long since I have updated but we have been busy with Harrison. Last weekend as I wrote was great. On Monday (Dec. 9th ) we went to clinic to have his counts checked and we needed blood, no big deal, we were home for dinner. We had the day off on Tuesday, Harrison and I hung around the apt, played and napped while Grandma and Grandpa did some Christmas shopping. On Wed. (Dec. 11th) we had clinic again to check labs and as it turned out Harrison showed the beginning signs of a central line infection (YIKES, this is a bad bad thing). They ran some IV antibiotics in clinic and let us go home because he had no fever but they wanted us to return in the morning so they could reassess it. Well we went back to the apt only to have his docs call at about 5:30 pm saying that they changed their minds and could we come back to be admitted for more IV antibiotics and they wanted to remove the line first thing Thurs morning. So we ate dinner and trucked back into the city and got admitted. They took out the line Thurs morning and put in a temporary one on the other side of his chest. They thought we could go home after some more antibiotics but then changed their minds again because Harrison’s white cell count was 0.0, which means he would be unable to fight an infection without help. We went without fever until yesterday (Friday) and it spiked to 104.4 (YIKES) so they have tripled his antibiotics and this brings us up to date. We are just sitting and waiting for the antibiotics to work and for his counts to go up so that his body is able to do some fighting on its own. Other than all of this we are well. Harrison is tired and sleeps often but he is otherwise in good spirits. He desperately wants to get out of the hospital and we are hoping his counts will start to recover by the beginning to the middle of next week. We are still on schedule for stem cell harvesting next week and the plan is still to come home for Christmas. Harrison requested that his whole family be together when Santa comes (I almost cried when he said that), he wants to have his cousins Emma and Logan over to play with all the new toys. So I am on a mission to get out of here and grant my baby’s wish to be in NC for Christmas. Please help me by praying and sending love and light so Harrison recovers soon. As for the MRI they are still in debate about the surgery. They have not decided what they are going to do, hopefully we will meet with the surgeon soon to discuss the options. But for now the plan is to take it day by day and get him well. Sorry this is so long but I wanted to let you all know the details of what’s happening. Mike arrived last night and he has been by Harrison’s side constantly. He will stay until Monday morning, and I am grateful for the relief pitcher. The last bit of really wonderful news I will share is about our friend Jake Courtney. He had his scans this weekend and they looked GREAT!!! No new tumor tissue (YEAH!!!) Please continue to pray for Jake and Harrison and all the children who need it, miracles do happen, I fully expect to have one for Harrison. That’s all for now and I will update again when our situation changes. Thank your for all your continued prayers and support. Please sign in to the guest book if you visit our site, reading your words of love and encouragement are really helpful for our family during times like this. Love, Gina

Saturday, December 14, 2002 at 11:30 AM (CST)

Hello everyone: Sorry it has been so long since I have updated but we have been busy with Harrison. Last weekend as I wrote was great. On Monday (Dec. 9th ) we went to clinic to have his counts checked and we needed blood, no big deal, we were home for dinner. We had the day off on Tuesday, Harrison and I hung around the apt, played and napped while Grandma and Grandpa did some Christmas shopping. On Wed. (Dec. 11th) we had clinic again to check labs and as it turned out Harrison showed the beginning signs of a central line infection (YIKES, this is a bad bad thing). They ran some IV antibiotics in clinic and let us go home because he had no fever but they wanted us to return in the morning so they could reassess it. Well we went back to the apt only to have his docs call at about 5:30 pm saying that they changed their minds and could we come back to be admitted for more IV antibiotics and they wanted to remove the line first thing Thurs morning. So we ate dinner and trucked back into the city and got admitted. They took out the line Thurs morning and put in a temporary one on the other side of his chest. They thought we could go home after some more antibiotics but then changed their minds again because Harrison’s white cell count was 0.0, which means he would be unable to fight an infection without help. We went without fever until yesterday (Friday) and it spiked to 104.4 (YIKES) so they have tripled his antibiotics and this brings us up to date. We are just sitting and waiting for the antibiotics to work and for his counts to go up so that his body is able to do some fighting on its own. Other than all of this we are well. Harrison is tired and sleeps often but he is otherwise in good spirits. He desperately wants to get out of the hospital and we are hoping his counts will start to recover by the beginning to the middle of next week. We are still on schedule for stem cell harvesting next week and the plan is still to come home for Christmas. Harrison requested that his whole family be together when Santa comes (I almost cried when he said that), he wants to have his cousins Emma and Logan over to play with all the new toys. So I am on a mission to get out of here and grant my baby’s wish to be in NC for Christmas. Please help me by praying and sending love and light so Harrison recovers soon. As for the MRI they are still in debate about the surgery. They have not decided what they are going to do, hopefully we will meet with the surgeon soon to discuss the options. But for now the plan is to take it day by day and get him well. Sorry this is so long but I wanted to let you all know the details of what’s happening. Mike arrived last night and he has been by Harrison’s side constantly. He will stay until Monday morning, and I am grateful for the relief pitcher. The last bit of really wonderful news I will share is about our friend Jake Courtney. He had his scans this weekend and they looked GREAT!!! No new tumor tissue (YEAH!!!) Please continue to pray for Jake and Harrison and all the children who need it, miracles do happen, I fully expect to have one for Harrison. That’s all for now and I will update again when our situation changes. Thank your for all your continued prayers and support. Please sign in to the guest book if you visit our site, reading your words of love and encouragement are really helpful for our family during times like this. Love, Gina

Saturday, December 14, 2002 at 11:29 AM (CST)

Hello everyone: Sorry it has been so long since I have updated but we have been busy with Harrison. Last weekend as I wrote was great. On Monday (Dec. 9th ) we went to clinic to have his counts checked and we needed blood, no big deal, we were home for dinner. We had the day off on Tuesday, Harrison and I hung around the apt, played and napped while Grandma and Grandpa did some Christmas shopping. On Wed. (Dec. 11th) we had clinic again to check labs and as it turned out Harrison showed the beginning signs of a central line infection (YIKES, this is a bad bad thing). They ran some IV antibiotics in clinic and let us go home because he had no fever but they wanted us to return in the morning so they could reassess it. Well we went back to the apt only to have his docs call at about 5:30 pm saying that they changed their minds and could we come back to be admitted for more IV antibiotics and they wanted to remove the line first thing Thurs morning. So we ate dinner and trucked back into the city and got admitted. They took out the line Thurs morning and put in a temporary one on the other side of his chest. They thought we could go home after some more antibiotics but then changed their minds again because Harrison’s white cell count was 0.0, which means he would be unable to fight an infection without help. We went without fever until yesterday (Friday) and it spiked to 104.4 (YIKES) so they have tripled his antibiotics and this brings us up to date. We are just sitting and waiting for the antibiotics to work and for his counts to go up so that his body is able to do some fighting on its own. Other than all of this we are well. Harrison is tired and sleeps often but he is otherwise in good spirits. He desperately wants to get out of the hospital and we are hoping his counts will start to recover by the beginning to the middle of next week. We are still on schedule for stem cell harvesting next week and the plan is still to come home for Christmas. Harrison requested that his whole family be together when Santa comes (I almost cried when he said that), he wants to have his cousins Emma and Logan over to play with all the new toys. So I am on a mission to get out of here and grant my baby’s wish to be in NC for Christmas. Please help me by praying and sending love and light so Harrison recovers soon. As for the MRI they are still in debate about the surgery. They have not decided what they are going to do, hopefully we will meet with the surgeon soon to discuss the options. But for now the plan is to take it day by day and get him well. Sorry this is so long but I wanted to let you all know the details of what’s happening. Mike arrived last night and he has been by Harrison’s side constantly. He will stay until Monday morning, and I am grateful for the relief pitcher. The last bit of really wonderful news I will share is about our friend Jake Courtney. He had his scans this weekend and they looked GREAT!!! No new tumor tissue (YEAH!!!) Please continue to pray for Jake and Harrison and all the children who need it, miracles do happen, I fully expect to have one for Harrison. That’s all for now and I will update again when our situation changes. Thank your for all your continued prayers and support. Please sign in to the guest book if you visit our site, reading your words of love and encouragement are really helpful for our family during times like this. Love, Gina

Saturday, December 14, 2002 at 10:53 AM (CST)

Hello everyone: Sorry it has been so long since I have updated but we have been busy with Harrison. Last weekend as I wrote was great. On Monday (Dec. 9th ) we went to clinic to have his counts checked and we needed blood, no big deal, we were home for dinner. We had the day off on Tuesday, Harrison and I hung around the apt, played and napped while Grandma and Grandpa did some Christmas shopping. On Wed. (Dec. 11th) we had clinic again to check labs and as it turned out Harrison showed the beginning signs of a central line infection (YIKES, this is a bad bad thing). They ran some IV antibiotics in clinic and let us go home because he had no fever but they wanted us to return in the morning so they could reassess it. Well we went back to the apt only to have his docs call at about 5:30 pm saying that they changed their minds and could we come back to be admitted for more IV antibiotics and they wanted to remove the line first thing Thurs morning. So we ate dinner and trucked back into the city and got admitted. They took out the line Thurs morning and put in a temporary one on the other side of his chest. They thought we could go home after some more antibiotics but then changed their minds again because Harrison’s white cell count was 0.0, which means he would be unable to fight an infection without help. We went without fever until yesterday (Friday) and it spiked to 104.4 (YIKES) so they have tripled his antibiotics and this brings us up to date. We are just sitting and waiting for the antibiotics to work and for his counts to go up so that his body is able to do some fighting on its own. Other than all of this we are well. Harrison is tired and sleeps often but he is otherwise in good spirits. He desperately wants to get out of the hospital and we are hoping his counts will start to recover by the beginning to the middle of next week. We are still on schedule for stem cell harvesting next week and the plan is still to come home for Christmas. Harrison requested that his whole family be together when Santa comes (I almost cried when he said that), he wants to have his cousins Emma and Logan over to play with all the new toys. So I am on a mission to get out of here and grant my baby’s wish to be in NC for Christmas. Please help me by praying and sending love and light so Harrison recovers soon. As for the MRI they are still in debate about the surgery. They have not decided what they are going to do, hopefully we will meet with the surgeon soon to discuss the options. But for now the plan is to take it day by day and get him well. Sorry this is so long but I wanted to let you all know the details of what’s happening. Mike arrived last night and he has been by Harrison’s side constantly. He will stay until Monday morning, and I am grateful for the relief pitcher. The last bit of really wonderful news I will share is about our friend Jake Courtney. He had his scans this weekend and they looked GREAT!!! No new tumor tissue (YEAH!!!) Please continue to pray for Jake and Harrison and all the children who need it, miracles do happen, I fully expect to have one for Harrison. That’s all for now and I will update again when our situation changes. Thank your for all your continued prayers and support. Please sign in to the guest book if you visit our site, reading your words of love and encouragement are really helpful for our family during times like this. Love, Gina

Sunday, December 08, 2002 at 12:16 PM (CST)

Hello Everyone: Hope you all are doing well—we are doing very well. Harrison did great with the last 2 days of chemo, he was not sick at all. He also did well for his MRI scan on Friday—we will have those results on Monday. They are just trying to determine if Harrison’s January surgery will require a neurosurgeon because there is some neuroblastoma in the spinal area—I will post the results when we get them. Mike arrived safe and sound on Friday afternoon despite the ice storm in Charlotte. We have had a great weekend. Harrison was so thrilled to see his dad and they spent a great Saturday playing while I did some much needed Christmas shopping. Today we bought and decorated a Christmas tree and he really enjoyed that. I can’t tell you how great it is to have a normal happy and hospital free weekend. That’s all for now—big boy is taking a nap so I am off to do some more damage at the Mall. Our family hopes all of you are having a blessed weekend too. Love, Gina

Wednesday, December 04, 2002 at 07:54 PM (CST)

Hello everyone, I just wanted to leave a brief update on how the week is going. Chemo started on Tuesday and it is a four-day course so we will be done on Friday and so far so good. This is the same combination that we had last time and it is very strong. Harrison is tolerating it well he has only been sick once yesterday and once today. He is really tired and the days are long but he has been a real trooper. We are looking forward to Friday, Mike is coming in for the weekend and we are going to spend some family time together. Perhaps we will get a Christmas tree this weekend and decorate the apartment. Harrison is worried that Santa will not be able to find him without a tree. His next concern is how is Santa going to get into the apartment when there is no chimney. I told him fortunately there is a balcony with a back door and he can land on it and come in!! I also told him we hope to be back in NC for Christmas day and Santa would surely find him. We hope you all are having a great week and I will update again towards the weekend. Love, Gina

Monday, December 02, 2002 at 07:26 PM (CST)

Hello everyone: We hope you all had a wonderful Thanksgiving holiday. Well today we finally got the news we were waiting for; Harrison’s bone marrow is CLEAN!!!!! This means that there is no evidence of neuroblastoma in his marrow. YEAAAAAHHHHH!!!!! We are so grateful for the news. All of our doctors in NC and NYC as well as Christine (the energy healer Harrison receives treatments from) have all been working very hard to heal our little prince and it looks like we are on our way. The CT scan showed that there is not much change in the tumor left in the chest cavity and the docs here are planning another surgery sometime in January. For now we will begin another round of chemo tomorrow (4 day course) in the outpatient clinic and then after we recover they will schedule Harrison for stem cell collection. This should bring us to around the week of Christmas and we hope to then come home to celebrate the holidays in NC. Harrison is in very good spirits and is doing very well. He is eating (we are back up to a very beefy 33.5 lbs), playing, and is usually in a great mood; we are going into this chemo in great shape and we are all hoping that he sails right through it. He even agreed to have his picture taken with Santa yesterday and if we can figure it out I will post them on the site (please forgive my technologically impaired self). Our family wants to extend its deepest thanks to all of you who have so generously prayed and sent us so much love and light. I will update again later in the week. Have a great day—we are!!!!!
Love, Gina

Thursday, November 28, 2002 at 10:18 AM (CST)

Hello everyone and Happy Thanksgiving. All of the tests went well this week and we will have our results on Monday; until then we are going to enjoy Thanksgiving dinner with family and friends. We hope all of you have a wonderful day; our family has a lot to be grateful and thankful for this year. I’ll write again late Monday afternoon with all the results. Thank you for stopping by.
Love,
Gina

Friday, November 22, 2002 at 08:57 AM (CST)

Hello all:
Well me made it to the “BIG CITY” thanks to Corporate Angel and Bank of America, it was a wonderful trip; everyone at BoA was great. Clinic went very well on Wed. Harrison’s counts were great and our weight is maintaining. We have tests scheduled for next week, CT and Bone Marrow for Tues. and Wed. and then we plan to enjoy a Happy Thanksgiving with our family and friends. We should have the results on the Friday after Thanksgiving so I will let you all know as soon as we do. Please add our precious child to your Thanksgiving prayers. Our family wishes yours a peaceful and loving Holiday. Love, Gina

Sunday, November 17, 2002 at 12:20 PM (CST)

“The best laid plans…” Well, the Nichols’ plans have changed again and the Monday flight we were on was cancelled. We are on a new flight for later in the week, which means that the tests will be pushed back a few days. We are hoping to get everything scheduled for the week of the 25th, so it looks like a New York Thanksgiving. This is not a bad thing because many friends and family have invited us over so we will be in good hands. We will see Doc McMahon on Wed. of this week and I will update further when we get the new test schedule. As for Master Harrison, he is doing much better this week. He has been a little emotionally unsettled since we got home but is becoming stronger and more back to himself with each day. We have been really enjoying being home, have had a few play dates, and spent some good quality time with Daddy. I will let you know as our plans take shape. Thanks for stopping by—LOTS of love from our family to yours. Gina

Thursday, November 14, 2002 at 10:03 AM (CST)

Hello everyone: Well the clinic visit on Wed. went well. It’s always a good visit when you don’t have to stay. Harrison’s counts were GREAT so we did NOT need any blood or platelets, YEAH!!!!! They also repeated the chest x-ray and that looks better. Here is the update: We think that we are leaving on Monday (18th) on a Corporate Angel Flight. Harrison has tests scheduled up a Sloan on Wed. the 20th (CT scan and Bone Marrow) and again on Fri. the 22nd (MRI). Who knows what will come after that. We take one day at a time around here. The test results will decide what comes next. So if you are inclined to pray please pray for clean Bone Marrow, that is the biggest threat that we currently face. I will update when we arrive in NYC and in the meantime we plan to play, play, play (he is wearing me out-- but that’s a good thing). Thank you for stopping by and for all the prayers. Love, Gina

Sunday, November 10, 2002 at 12:42 PM (CST)

Hello all: Well, in the famous words of Dora the Explorer, “WE DID IT, WE DID IT,” we got out of the hospital on Sat. late in the afternoon. Harrison is doing well and we are all grateful to be home. His counts are good and we hope to take advantage of this week and do some fun activities. We have pushed back the tests at Sloan until the week of the 18th to give us a well-deserved break. We will have a follow up with Doc McMahon at clinic on Wed. and I will mostly likely not update until then. Thank you for checking in we are so thrilled to have so many people praying and caring for us. And for those of you following Jake’s progress he is doing great, the surgery went well and he is doing great in the ICU—these little guys never cease to amaze and inspire me.
Love, Gina

Thursday, November 07, 2002 at 09:13 AM (CST)

Hello all: Sorry I have been a slacker about updating the web page but I really don’t like just giving you medical information day after day, especially when the news is not fun to report and since we are still in the hospital medical info is what I have. Harrison is doing much better today and the GOOD news is that we should be going home tomorrow. As I reported earlier fever is what brought us here and has kept us here. In addition, Harrison has developed some fluid in his lungs and they have been watching that closely and treating it with antibiotics and respiratory therapy. He sounds and looks much better today and they are going to repeat the chest x-ray today. In addition, to all the medical treatment Christine has seen Harrison almost everyday since we have been back and has spent a lot of time with us here in the hospital doing energy healing treatments. Hopefully we will be out tomorrow and I am not sure when we will be back in NYC. Tests are scheduled for next week but we might see about putting them off for a week or so. I will update after we get out to let everyone know what is happening. Also please extend your prayers today for our friend Jake Courtney; he is having a major surgery up at Sloan-Kettering today, you can check in on Jake from the link on Harrison’s page. He is a brave and wonderful child and we know that God is holding him in his hands today. Thanks for checking in on us; our family wishes you all a healthy and happy day.
Love, Gina

Saturday, November 02, 2002 at 06:56 PM (CST)

Hello all: Sorry we have not updated in a while but Harrison has once again kept us very busy. We had a nice relaxing evening on Tuesday (our first night home) and on Wed. had our first clinic appt., as it turned out we needed blood and platelets and Wed. turned into a 12 hour day, we spent the day at our hospital getting transfused. On Thursday Harrison did get dressed up for Halloween and he looked GREAT unfortunately our whole family is technologically challenged and we have been unable to get the pictures onto the web site, but we are still trying and have enlisted some help!!! I hope to post them soon so keep checking. On Friday Harrison was running a low temp on and off all day and by 9:30 pm it reached over 101.0 and alas we had to check into the hospital for antibiotics, and this is where I am currently updating you from. We will be here at least until Monday; I hope to be out by then to finally enjoy a few days at home before we return to NYC. Harrison is doing well and is extremely tolerant of the whole ordeal although he does frequently ask to go home, who can blame him. He has also received energy treatments from Christine everyday since we have been home, the energy work is moving very quickly now and we are all looking forward to the day that the merger between western medicine and complementary medicine reveals its success in Harrison’s wellness. I will keep the site updated as things progress here. Thank you for checking in on us, our family wishes yours a peaceful evening. Love, Gina

Tuesday, October 29, 2002 at 07:35 PM (CST)

Hello everyone: Well, we made it home, thanks to Bank of America and their beautiful jet. Harrison is doing well, he was really happy to see his Dad and his playroom. He was tired this afternoon from the trip and slept a lot. His Auntie bought him a Billy Blazes Rescue Hero costume for Halloween so we are ready to go… We will see doc McMahon in clinic tomorrow and find out if we can go “trick or treating” if not we will get dressed up and hand out candy. I hope to post new pictures on the site for the weekend. Thank you everyone for stopping by the site, your kind words continue to overwhelm and inspire us. I will update in a few days after our Wed. clinic apt. and Thursday’s Halloween festivities. With Love, Gina

Sunday, October 27, 2002 at 07:43 AM (CST)

Hello all: Well we did make it home (back to the apartment) on Friday as planned (YEAHHH!!!!). Grandma and Grandpa cooked us a GREAT meal and we relaxed and enjoyed ourselves. On Sat. we had a really wonderful visit with Auntie Julie, Aunt Krissy, and Uncle Pat (thanks everyone for all the great toys, especially Katie and Ryne for sharing with us we hope to see you both on our next trip up). We called the hospital yesterday and all the cultures are still negative (another YEAHHHH!!!!). Today we may venture out for a ride to see the changing leaves, Harrison is still taking it easy so we will honor that and take it slow today. Tomorrow is another clinic day, just for labs I hope and then on Tuesday we get to fly home for a week or so to visit our Daddy and all our friends (a BIG YEAHHHHHH!!!!!). We hope to be in full swing for the neighborhood “TRICK or TREAT” festivities and then it’s back up to NYC for more tests and further treatment. We are grateful to be home and doing well and thank you all for stopping by to see how we are doing. Have a great rest of this beautiful fall weekend. Love, Gina and Harrison

Thursday, October 24, 2002 at 04:20 PM (CDT)

Hello everyone: Well I guess I spoke to soon; Tuesday was a better day but not a better night. At around 9:30 pm Harrison had 102.0 temp. (YIKES) and we had to go into the hospital. When we got there his blood pressure was low and they had to manage him with IV fluids in Urgent Care until about 3:30 am and then they were able to transfer us to a regular room. We had to have his catheter lines cultured for infection and start on an IV antibiotic (just in case there was an infection). And the GOOD NEWS is so far the cultures are negative (YEAH!) They did give him the day off from chemo yesterday but since he is doing well they resumed his course today. We will stay inpatient until tomorrow evening and finish the chemo. The plan is to spend the weekend at the apartment and then back for a clinic visit on Monday and then hopefully we can get to NC for a week or so after that. Well, that was a mouthful. As for the rest, Harrison is doing ok. He is not really eating but that’s ok he usually rebounds (today he drank a few drinkable yogurts). Harrison is ready for a break and is looking forward to seeing his dad and his friends next week at home. He is trying to decide what to be for Halloween, he is as fickle as a pregnant woman and changes his mind daily. His latest choice is a “Transformer,” YIKES, where am I going to come up with that??? I will update again on the weekend after, as Harrison says, “we blow this joint.” Our family hopes you all are well and thanks you for checking on us.
Love, Gina

Tuesday, October 22, 2002 at 06:52 PM (CDT)

Hello everyone, and thanks for checking up on us. Today was another long one (11 hrs) in clinic. Harrison did much better today (he did not get sick!!!) He is pretty pooped though. He is in his PJs watching “SPONGE BOB HALLOWEEN” (a gift from our friends Jake and Chanda). We are going to hit the hay early tonight; we have another long one tomorrow—2 down and 2 to go. We are trying to get back to NC on Friday for a brief visit and then it’s back up here for more tests and the next round of treatment. Thank you all again for all your thoughts and prayers, it’s working today was definitely a better day!!!
Love, Gina and Harrison

Monday, October 21, 2002 at 07:22 PM (CDT)

Hello all: Well we have endured our first day of chemo as outpatients in the peds clinic and it was a long day. We started at 6:30am and did not get home until after 7:00pm. We spent 11 hours at the clinic. The chemo went ok and even the 11 hours went fine. Harrison watched T.V., thank God for Nick Jr., he also played a little in the playroom with grandpa and then napped for a few hours. Everything was going ok until the car ride home when he started to get sick and it has continued a few times this evening. He is really wiped out tonight. I think this is going to be a tough round, it is only day 1 and he feels rotten. He has not eaten anything today and I hope he at least feels like some breakfast in the morning. Sorry I wish I had better news, for Harrison’s sake. We all hope tomorrow brings a better day. The good news is that Harrison’s counts are really up there (YEAH!!!) and that should help with how he feels (WBC 12.3, HBG 10.3, and platelets 543). We just ask your help in sending prayer, love, and light so that Harrison is able to sail through this as he did the surgery. His back and side are still sore from that but the oral pain meds are helping us manage. Well have to go we need to be up at 6:00 am to start this all over. Wish us luck.
Love, Gina

Friday, October 18, 2002 at 08:06 PM (CDT)

Hello all: Well, I am so sorry it has taken us so long to update the page but Harrison has kept us all busy. After 2 nights in the POU Harrison was doing so well that they shipped us off to a regular room on the peds floor. We only spent 1 night there (Wed.) and they released us on Thursday!!! YEAH!!!! I guess if he was well enough to spend more time in the hospital playroom than in bed they decided he was ready to go. He is so amazing, he was in a 12 hour chest surgery only 6 days ago—he is a real miracle. Well as for the rest of us we are holding up. We did receive the news on Wed. that Harrison’s bone marrow is still positive for disease. That was news we could live without. What this means in terms of Harrison is that it is going to take longer than we had hoped to become cancer free, but we know that it will still happen. The docs here want to start chemo on Monday. We were hoping to go back to NC for that but they would like us to stay here for it. It will be a 4-day course outpatient, so the good news is that we get to come back to this beautiful apartment every night. We are hoping to go back to NC for a visit after this chemo and before the next round of treatment in Nov. Please pray that Harrison tolerates this chemo with no problem. It is going to be a tough round (very strong) to try and get to the bone marrow. So far we have been blessed with swift recovery and we hope this trend continues so that Harrison does not experience any discomfort. We will keep you posted on how the week goes. Until then Daddy arrives tomorrow and we are planning a quiet weekend just relaxing and enjoying each other. Thank you for continuing to demonstrate all your love and support. Even though things have gone exceptionally well it has been a difficult time for our family and we are grateful to have you all pulling for us. Your notes and prayers are our inspiration.
Love, Gina, Mike, and Harrison (newly named WONDER BOY!)

Monday, October 14, 2002 at 09:35 PM (CDT)

Hello all: Well, Mike so sooner got the internet access figured out in the PICU and we moved to the POU (Pediatric Observation Unit) at Sloan-Kettering. This required a trip across the street in an ambulance, which Harrison thought was really cool. Harrison is doing better than we could have hoped for. Today they took out his chest tube (it was used to drain fluid from the lungs and chest cavity), they also took out his Foley catheter (into his bladder), and his Arterial IV line in his wrist (used to draw blood and take blood pressure). WE ARE TUBE FREE!!!!! Everyone here seems to be impressed with him, we could have told them how extraordinary he was. Our room on the POU is great; it is large, private, and quiet. In addition to all this activity Harrison had time to eat a bowl of rice krispies, a cinnamon roll, and a chicken finger each followed by several glasses of Gatorade and Lemonade (so much for the standard Jell-O and chicken broth). His nurses at CMC will be happy to hear that he is teaching all his nurses here how to do transformers and build construction sites (our boy is in full swing). Thank you for all your wonderful thoughts, prayers, and love. Mike and I are grateful to have the support of so many friends and family. We will continue to keep you posted as things unfold.
Love, Gina, Mike, and Harrison

Sunday, October 13, 2002 at 05:28 PM (CDT)

Hello everyone: Mike finally figured out how to access the phone line from Harrison’s PICU room for me, so I could write this update. Thanks for all the lovely notes. This is the first time I have read them since Thursday, although my Mom and sister do a good job telling me about your entries. Harrison is doing VERY well. He is breathing nicely on his own and they continue to remove tubes. In addition, to removing the vent (breathing tube) and his NG tube this morning, as my Mom told you, they have removed a peripheral IV line in his foot and have stopped the suction on his chest tube, which means that, too, should come out soon!!! He is drinking GREEN GATORADE (as all his CMC nurses know it’s his favorite) and watching SPONGE BOB SQUARE PANTS movies. He is talking well and has let us know that he wants to go back to the apartment to play with his toys, (not bad for only being out of a major chest surgery less than 36 hours) so things are almost back to normal. The Docs here are estimating that he will get out of PICU possibly sometime tomorrow and into a regular room. That's the medical update. As for energetic work, Christine has worked on Harrison's lungs and has given him large amounts of energy. She has also worked on his throat and nasal passage during the extubation process. Due to the benefits of Western medicine and Engergy Healing Harrison is experiencing little pain and much success. As usual Harrison continues to amaze and teach everyone he comes in contact with—that’s our boy!!! Mike and I are doing well and our family has been wonderful. We will update again soon. We expect a peaceful evening and our family hopes you, too, have a peaceful and loving night. Give your children an extra hug and kiss tonight, they are such blessings. Mike and I are privileged to have Harrison as our blessing.
Love
Gina

Sunday, October 13, 2002 at 10:05 AM (CDT)

Good Morning! The latest news is that Harrison is doing GREAT! He never ceases to amaze us with his courage and his strength. He is truely our miracle boy. Now for some details. Harrison is still in the PIC unit. This morning they removed his ventilater tube, and his nose tube. His chest tube has been draining on it's own without the help of the pump. The docs are very impressed with his progress (we could have told them that"wonder boy" is always impressive). Our goal now is to get out of PIC and into Sponge Bob p.j's tomorrow. Gina and Michael are holding up well, and looking forward to every day being better than the last. We as a family are encouraged by, and grateful for your constant prayers and support. We are very thankful for all of you. As always, "Greatful Grandma Rose."

Saturday, October 12, 2002 at 07:20 AM (CDT)

Good Morning Harrison Fans! Let me start by saying we all thank you for prayers and positive thoughts and that Harrison is doing fine. Gina and Mike have spent the night at Harrison's side so I will attempt to update you all as best I can. The surgery took a total of 12 hours so by the time we spoke to Dr. LaQuaglia it was around 9:45pm. The update goes like this: Dr. LaQuaglia was able to remove 90% of the tumor on the left side of Harrison's chest cavity so from an x-ray you can now see all of his ribs clearly. The 10% that he was not able to remove is located on Harrison's aorta. Dr. LaQuaglia did however atempt to remove this portion but due to some bleeding decided that a complete scraping to thin it out was the best option. So what remains of that 10% is a thin shell. The future plan for this remaining 10% will be to attack it with both chemo and radiation. The best news of all this is that the tumor (neuroblastoma cells) did not appear to be what we or Dr. LaQuaglia expected. We have learned that neuroblastoma cells tend to be grey spongy matter much like that of the brain. Dr. LaQuaglia discovered that Harrison's tumor was a white, hard stickly like matter, much like that of a ganglianeuroblastoma tumor. Gangliaqneuroblastoma cells appear be be cells that are turning "cold" or benign. We will not know for sure these exact results until the pathology reports return next week but all the signs point in Harrison;s favor. Harrison had a stable night last night but did however spike a 102 fever and experienced a drop in blood pressure (we have been told this is not uncommon after a major surgery) but thanks to tylenol and some plasma he is doing just fine. For the next few days Harrison will remain sedated and comfortable allowing him to regain his full strength. We were all able to see him last night and his color is great and his looks quite peaceful. Thank you everyone for everything. We talk again real soon.
Love Aunt Erin.

Friday, October 11, 2002 at 02:45 PM (CDT)

Hello Everyone,
This is Michael here and we just wanted to update everyone on how the surgery is going. He has been in surgery since 9:30 this morning and it is going to be a long day. We have received 2 updates, the first one the surgeon replaced his central line with a new one. The second update was to let us know that everything was going as plannned, no big surprises, just removing lots of tissue. They are going to update us again by five. The surgeon has booked the O.R. for 10 hours, so it will be a long day. We are all hanging in there, just keep praying for Harrison.

Thursday, October 10, 2002 at 06:11 PM (CDT)

Hello Everyone,
All of your notes to our family are so beautiful, thank you. Well, today we received our CT test results and we will receive the Bone Marrow results by Tuesday. The CT shows that we still have a tumor in the chest cavity. We met with the surgeon he is a very kind and compassionate man and he was honest in telling us that we will have a tough surgery but is hopeful that all will go well. It will take an estimated 10 hours, we will start at 9:00am and will make an effort to update the web site throughout the day. Harrison is doing GREAT. His dad and his aunties arrived today and he is thrilled with all the attention. He knows he has a big day tomorrow but is not worried, we have surrounded him with love and lots of toys (that always helps). I think he and his aunties are secretly planning an all nighter with him and his new toys!!! We are thankful for all the prayers and positive energy you are all sending our way. Our family is confident that God and Harrison's spirit will keep him safe and see him through tomorrow's challenge.
Love, Gina, Mike, and Harrison

Tuesday, October 08, 2002 at 04:23 PM (CDT)

Hello Harrison fans: Thanks for all the great notes you have been posting!!!! Well, we have been busy here in the city. On Sat. we spent the day with our cousins and had a wonderful time. We ate lunch, went on a hay ride, picked pumpkins, painted the pumpkins, and had a lovely dinner. It was a full 10 hr. day (Thanks Uncle Peter, Aunt Pam, Taylor, Gabriella, and little Peter)!!! On Sunday we laid low, did some shopping, and had a quiet dinner at home and on Monday we went on a shopping spree at FAO Schwarz!!! Harrison had a GREAT time and Grandpa's wallet was a little lighter in the end but what a FUN day! Thanks Grandpa and Grandma (Harrison and I would be lost without you). You would think we all forgot why we came but Tuesday arrived and it was our first day at clinic. It wasn't FAO Schwarz but everything went very well and Harrison assessed the Playroom with the confidence of a FAO professional. Harrison's labs look good and Doc Kushner, like Doc McMahon was impressed at how terrific Harrison seems to be doing. His weight is holding at a beefy 34 lbs (this is the most we have weighed since last March)!!! and he continues to eat well (do cinnimon rolls and Goldfish count as a food group???) Tomorrow we will have a CT scan and a Bone Marrow test. Please pray that these test results reveal what we all already know, that Harrison is going to be fine and remission is a stone's throw away. I will keep you all updated as the results come in. Surgery is still scheduled for Friday and we are ready. Harrison is so strong and is physically and emotionally in great shape. We are all feeling peaceful about the days ahead and honored to share Harrison's journey. Thank you again for all the love and support.
Love, Gina, Mike, and Harrison

Friday, October 04, 2002 at 10:47 PM (CDT)

HELLO EVERYONE AND WOW!!! What wonderfully thoughtful and touching notes we are receiving from all of you-- I don't know what to say, except keep them coming because they keep us going and thank you. Well, we have made it to the "Big City" safe and sound thanks to Corporate Angel and the VF Corp. What a terrific week we had in NC prior to coming North. It was busy but lots of fun. Harrison played a lot in his playroom, had several play dates with friends (so did mommy), baked cookies and banana bread, went out to dinner with his Auntie Erin, Uncle Rich, and Emma, spent the night at their house, ran ALMOST naked in a public fountain, and went to the Pumpkin Patch and picked pumpkins!!! In addition to all this we even made time for Doc McMahon who said Harrison looks terrific on paper (labs were good!!!) and even better in person. And on top of all that he had a session with Christine. As most of you know, Harrison enjoys the benefit of both Western Medicine and Complementary Medicine. Christine MacMahan, an Asatti Practionier, uses universal healing energy to help accelerate the body's natural healing processes. This week she was able to energetically transfer homeopathic doses of Iron into Harrison to help with HCT levels-- pretty cool stuff. Harrison loves seeing her and enjoys the energy treatments. If anyone would like more info. on Asatti you can go to the web site at www.asatti.com, using alternative medicine has been a great experience for Harrison and our family. And as for the Western Medicine--we start at Sloan-Kettering on Tuesday with a clinic visit, Wed. we have a CT Scan and Bone Marrow test, Thurs. surgical consult, and Fri. is the surgery. But until then it's more FUN FUN FUN!!! We are hoping to visit the Liberty Science Center, see our cousins and do another Pumpkin Patch (you can never have enough pumpkins), and maybe even the Bronx Zoo if time permits. Next week Daddy arrives with Harrison's two Aunties and Uncle Robert and Aunt Mary are flying in from Boston. We are going to surround Harrison with Love and Light so please join us in whatever way you are able to. I will continue to update as we move forward on this ever changing journey and thank you for all the thoughts and prayers as our family prepares to embrace our upcoming challenges.
Have a beautiful and peaceful day.
Love,
Gina, Mike, and Harrison

Thursday, September 26, 2002 at 02:33 PM (CDT)

Hello everyone,
First let me say how touched we are to have received all of your guest book notes. We are thrilled to read them and are truly blessed to have soooooo many people who love and care for our family, so we all wanted to say thank you from our hearts. Sorry it has taken me so long to update the site but our computer has been down (UGHHHHH)! Well we are all doing great. Harrison has been non-stop action since we got home from the hospital on Sat. He is eating great and his cell counts are terrific! He is such a warm and beautiful child and his spirit just shines through. I wish you all could see how great he is doing. We have been in a mad dash around here preparing for our trip. Mom and Dad, as usual have come to the rescue, and are taking care of everything from sheets to pots for the apartment (with the help of the NJ clan we should have everything we need to set up camp for a few months-- thanks to all those who have helped us get ready, and to all of you who have offered unconditional love and supplies). We have a few extra days to prepare because NY has postponed his surgery a few days (Oct. 11), it was a scheduling conflict, it had nothing to do with Harrison's health. Doc McMahon feels great about Harrison being ready for the surgery, the real question is, is NYC ready for "Big Boy?" Harrison's list of concerns about the trip includes 1) how many toys he is able to pack and 2)are they going to be too large for the plane or for the living room at the Marriott Residence. I have tried to convince him that we have a beautiful apartment to stay in that will accomodate everything but he informed us that HE would be at his favorite hotel!!! Harrison is also worried about his friend Jake. Please continue your prayers for Harrison, Jake (who is still in the hospital), and all the "rainbow of hope children" we all thank you and are grateful for the light and love you continue to send to all of our children and our families.
Love, Gina, Mike, and Harrison

Sunday, September 22, 2002 at 09:28 AM (CDT)

Hello everyone,
Well, we made it home from the hospital yesterday. YEAHHHHHHH! It was a long 11 days and we are grateful to be home. As most of you know we were battling dehydration and nutrition issues but now Harrison is doing GREAT! He hit the ground running and has not come out of his playroom since. He is eating very well but Doc wants to continue the TPN (nutrition) at night for a few days to give him every advantage. Mike has been playing hard with Harrison while I prepare us for our trip, it's only 9 days away. YIKESSSSS!!! We plan to do some fun activities next week when our counts come up a bit and will spend the rest of the week getting ready for "The Big Apple." Thank you to everyone who has visited and signed in to the Guest Book. It is heart-warming to read your entries and it really helps to keep us going knowing how many people are pulling for us. Please keep all the Rainbow kids in your prayers, you can visit their sites by clicking on the link provided on Harrison's page.
Thank you and have a peaceful day.
Love,
Gina, Mike, and Harrison

Friday, September 20, 2002 at 12:14 PM (CDT)

Hello Everyone,
Well thanks to Chanda (Jake's mom) I finally got his page up and running. Since this is our first journal entry I wanted to give an overview of what has been happening with us. Harrison was diagnosed in May of 2002 with Stage IV Neuroblastoma. Neuroblastoma is a solid tumor mass most commonly found in the stomach area, Harrison's is in his chest cavity behind his left lung. We spent about two weeks in the hospital in May when he first got diagnosed. We had surgery to biopsy the tumor, put in a chest tube (his left lung was collapsed), and to place the Hickman cath. in his chest. He also had a bone marrow test to confirm that the cancer had spread to the marrow (Stage IV vs. Stage III). We then received our first round of chemo. Since May he has had 4 more rounds of chemo., 2 fevers,one infection, 2 trips to Grandma and Grandpa's house at the beach, and several trips to Chuck E Cheeses, as well as 1 trip to NYC including a stay at his favorite hotel, the Marriott Residence. All in all, he is a real trooper and puts up a good fight. Doc McMahon says we are doing well except that he would have liked to see us cancer free by now so he is going to turn us over to Dr. Kushner and the Neuroblastoma team at Sloan-Kettering in NYC. They have some new and experimental treatments up there that are unavailable at CMC that Harrison should benefit from. We would like to thank Dr. McMahon and his staff at the clinic for taking great care of us as well as our nurses on the 7th floor (we call them the angels of 7T) their care, love, and support have gotten us through some very tough days. We will miss you all. So we are off to NYC on Oct. 1st. Harrison will have his first (and hopefully only) big surgery to remove to tumor on Oct. 8th in NYC and then treatment to get rid of the bone marrow involement begins. I will keep everyone posted as we go. As most of you know Harrison's personality, it is no surprise that he is looking forward to the plane trip to NYC and since his new best buddy Jake Courtney is also going to NYC he is really looking forward to it. Please read Jake's page ("Hope for Jacob" you can access it from the "rainbow of hope" web site) he is going for surgery the week after us and will also be treated at Sloan. Please pray for both of our boys as they face this incredible journey. Thank you for checking in and our family hopes you have a peaceful day.
Love,
Gina, Mike, and of course Harrison

Thursday, September 19, 2002 at 04:01 PM (CDT)

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