Andrew Thibeault

Endures

a Heroic Moment.

Go see the plaque

in the park

in Cardiff by the Sea:



GUESTBOOK ENTRIES- ORIGINAL AND UNEDITED:






An Overview of Andrew's Challenges

and accounts of his courage in responding to them



2002

2002 - June-ish: Andrew lets us know for the first time about the pain in his hip. He begins stretching more, both before and after soccer practices, but the pain never really subsides, and it never really goes away. When kids are in sports, there's always some new tweak or bruise every week, so he gets a lot of encouragement to stretch a lot, and to rest it whenever possible.

2002 - August: The pain in his hip now has become nagging and chronic, and we realize that it has lingered much too long for a temporary, passing, injury. We think it might be a more serious tear than we thought. We visit the family pediatrician, who orders a slew of X-Rays. He is very concerned, but the radiologist returns a "can't see anything" verdict. The official diagnosis is "we don't really know, but continue stretching and rest it whenever possible", which doesn't offer any relief.

2002 - December: After slowing down noticeably on the field, and taking some ribbing from teammates, Andrew lets us know, blurting out in a fit of frustration, that "it hurts so bad that I can't even walk any more, let alone run." Doctors' appointments are set for more detailed diagnostics. We hope that the holiday rest will help, and he enjoys the break from school under a pile of warm blankets.

2002 - January: Additional scans, MRI's and CT scans, discover a mass engulfing Andrew's right pelvis, and a needle biopsy is scheduled. The preliminary results suggest either Ewing's sarcoma or Chondroblastic Osteosarcoma- two varieties of bone cancer that are very similar, but respond differently to various treatments. Doctors at Children's Hospital in San Diego identify the protocol for treatment: Chemotherapy to kill as much of the cancer as possible, surgery to remove the tumor from his body, and more chemo to kill any remaining cancer, and to kill any metastatic cancer cells (cancer cells that have spread from the tumor in his pelvis to other parts of his body via the circulatory system.)



2003

2003 - February: Chemo begins, and includes courses of 4 different "agents." Not pretty. The poor guy ends up vomiting his guts out and dry heaving; we end up holding Mr. Tough Guy's hand as tears stream down his face, and he sweats, and his body convulses. We are told that not everyone has this severe a reaction, and hope that some of those times will come later for Andrew on other courses of chemo.

2003 - June 4: Resection (surgical removal) of the tumor with clear margins. Traumas during surgery include blood loss (and blood products use) of 310 units in 2-3 days. Andrew codes for 90 minutes (his heart stops beating, and he stops breathing.) The secondary objective of the surgery shifts from implanting an allograft (a frozen pelvis from a donor to replace Andrew's old pelvis) to everyone scrambling to simply save his life. His brother Alex calls in people for a prayer session, and folks in the waiting room begin doing their best to communicate with the Higher Power. After Andrew's still body has laid on the operating table for an hour and a half, and the surgeon prepares to "call the procedure", Andrew suddenly comes back to life and 45 people in the Operating Room gasp in disbelief. Mark Estes, one of the two cardiac techs who did CPR for 90 minutes, is a first-hand witness to the miracle and tells the story the best. The miracle is 2-part: Andrew "came back to life" and he had no brain damage.

Andrew spends a week in Intensive Care, and about a month in the hospital recovering. He gains some feeling in his toes, and scar tissue begins filling in the huge hole where his pelvis used to be. He is stoked because they were able to perform "limb salvage surgery" (they didn't have to amputate his leg) and even though his leg is, at this point, free-floating since there's no pelvis for it to be attached to, he looks forward to rehab and an opportunity to regain at least some use of the leg. Dr. Vaughan reassures him that his leg is securely attached, and that he should begin standing on the leg to promote the growth of stabilizing scar tissue.

2003 - September: About a month before Andrew is scheduled to begin the post-surgical chemotherapy, he is still about 43 pounds below his normal weight; subtracting for the 14 pounds of bone, tumor and tissue that was removed in the Hemipelvectomy (surgery to remove half of the pelvis) he is about 50 pounds lighter than his optimum weight. He is emaciated and pale, and we all fear that he is too weak to survive the upcoming chemo. We discover TPN, a form of liquid nutrition that is fed a person intravenously, and the doctors agree to begin administering it. He begins to bulk up, and goes into the chemo a bit stronger. The good thing about the TPN, is that he can still be getting nutrients even when he is severely nauseated and laying immobilized in bed trying to recover from treatments.



2004

2004 - April: By this time he's gone through almost 30 chemotherapy treatments, neo-adjuvant and adjuvant courses with either individual, or combined, applications of high-dose methotrexate, cisplatinum, ifosfamide, etoposide, and doxyrubicin.

2004 - April 28: The chemotherapy protocol concludes, and we all pray that the treatment hell that Andrew has endured has been worth it. But CT scans show 2 nodules in Andrew's left lung (3-4mm, calcified) and 1 in his right lung (1-2mm.)

2004 - April 28: A thoracotomy (surgery) on Andrew's left lung (the surgeon cuts an incision on the side of the body, reaches up under the ribcage and runs his hand over the lung to feel for little sand-like bits of tumor in the lung) yields 8 nodules, all w/viable (live) tumor cells. While this elective procedure will be another weakening blow, Andrew courageously tells us that it's the only way to "know for sure" and directs the general surgeon to "put a date on the calendar".

2004 - May 5: A thoracotomy on the right lung yields >10 nodules. We are aghast. We panic. The latest 2 sets of tests indicate that the cancer has metastasized (spread) through Andrew's body. Bone cancer often shows up in the lungs because all the blood in the body flows through the lungs, and the lungs act as a sort of "strainer" that catch tumor cells and offer a great growing ground for them. The national protocol for the treatment of bone cancer has effectively failed for Andrew, and there's nothing that any doctor knows that will be guaranteed to work.

In looking over the information, it seems that none of the prognostic indicators (the facts that can predict the odds that Andrew will even survive) are in his favor: 1) late discovery of the tumor (7 months between first symptoms and actual diagnosis), 2) the location of the tumor is on the body core (not an extremity that can be cut off), 3) tumor necrosis (the percentage of cancer cells killed by the chemotherapy before the surgery) was only about 60% rather than the 95-98% that is the target. Other issues stack up against him, but Andrew's real concerns are getting to visit his friends while at home, and to see people when he's stuck in the hospital. By now we've made sure he's gotten all the "modes of communication" that he needs to stay in touch with others: cell phone, laptop, message couriers (brother, Mom, Dad, friends, nurses - actually everyone within command range :)

Doctors indicate that there's nothing more that can be done, and we begin to explore experimental options. We begin beating the bushes for clinical trials, for any other treatments that have provided results, to any extent at all, and for stray ideas that may be of use.

2004 - 2nd Half of the Year: Andrew is now treated with chemo agents that are used to primarily treat other forms of cancer, but may have success in addressing the protein pathways that are actually responsible for the unique cancer that Andrew is fighting. He tries Gleevec, and we research other possibilites, since he "has nothing to lose." The primary maxim of medicine, "First, do no harm" seems to have no relevance to us now. We brush it aside.



2005

2004-2005: We visit UCLA, MD Anderson in Texas, and Dana-Farber (associated with Harvard Medical School) for ideas that may work. All of these are respected Sarcoma centers, and have experts who focus on the specific kind of cancer that Andrew needs to target. Norman Jaffe at MD Anderson is the doctor who treated Ted Kennedy, Jr., when he was fighting osteosarcoma, and Karen Albritton at Dana-Farber has sarcoma experience with both adult and pediatric populations. In narrowing down possible avenues of attack, Dr. Albritton indicates that the likely focus of treatment that might help Andrew hasn't even been researched yet, and our discussion is purely theoretical at this point. Not one penny has been spent on the variants of the cancer that Andrew might have, just because there are so many kinds of cancer, and sarcomas, especially, are relatively rare; therefore, fewer research dollars are dedicated to finding a cure for it. It just doesn't make any business sense, especially relative to other more prevalent cancers, and other diseases.

In addition to the awesome individual caring by Andrew's oncologist Dr. Jenny Kim, and the other physicians at Children's Hospital in San Diego, we get feedback and suggestions from Dr. Lasky at UCLA, Dr. Carola Arndt at the Mayo Clinic in Minnesota, Dr. Judith Sato at the City of Hope in LA, and Drs. Ross Wilkins and Lorrie Odom in Denver, among others who generously give their time without concern for billable hours.

2005: Scans reveal that the cancer has re-occurred in the pelvic area, and metastasized to spots on his spine, and in his liver. As we begin to run out of time, we discover that Ariad Pharmaceuticals has a new chemo agent, an mTor-Inhibitor, in Stage 2 Clinical Trials, which is being fast-tracked because of its efficacy (it works!) and patients suffer minimal side-effects. Working through Dr. Chawla, a doctor at a medical practice near UCLA, it looks hopeful that Andrew will be able to get the treatment through a Clinical Trial, replacing a participant who dropped out. The risk is that he has to stop all treatments for a full month.

2005 - February: Andrew begins receiving palliative care through Home Hospice- the huge advantage is that the hospice folks are experts in pain management, and the commitment to the palliative care program is reversible if a patient decides to seek additional curative treatment (the goal of curative treatment is to cure a condition, while palliation is concerned mostly with "quality of life" where a patient is most likely terminal.)

2005 - February/March: We schedule Andrew to begin treatment with AP-23573, relieved that we are not forced to subject him to treatments of High-Dose Ifosfamide, or High-Dose Etoposide- two chemo agents that would most likely shut down the functioning of his kidneys or other vital organ. By now, the tube to one of Andrew's kidneys is being crimped by one of the tumors, and he basically has only one good kidney- which increases the risk of doing any traditional chemo.

2005 - March: Suddenly, Ariad Pharmaceuticals denies Andrew participation in the Clinical Trial, and denies him off-trial use of their new chemo agent, even though the FDA gives approval for them to sell it to us at market price, for application either by his oncologist, or the oncologist administering the drug near UCLA. Emails fly, and we pressure them into a conference call with Andrew's oncologist, their medical director and their legal department. They indicate that there is no mandate requiring them to allow Andrew access to the drug, and that the "Compassionate Use" option is elective on their part. They indicate that they don't even have a department that could process the request paperwork.

2005 - Mid-March: By now we have seemingly exhausted all possible angles, including: 1) the use of a frequency generator to create a "mortal oscillatory rate" that destroys the cell structure of tumors (based on the same theory as an opera singer holding a note long enough for a wine glass to shatter because the vibration has weakened the structure of the glass), 2) the experimental use of a common blood growth agent, when nebulized and inhaled, retards the growth of tumors in the lungs, 3) despite the predicted lack of results from treating Osteosarcoma, the use of radiation therapy on the sacrum, now engulfed by a tumor eating into Andrew's spine- surprisingly, the tumor is affected, as expected when radiation is used on Ewing's Sarcoma.

2005 - Late March: Andrew calls us to his bedside and tells us that, "I'm not going to do any more treatments. I know it's going to be hard, but I'm giving my life to God." Then he closes his eyes, and lies back to rest again, still and resolute. We all sit silently, trying to understand what it means.

His breathing is labored and he has at least two tumors in his lungs that are the size of baseballs. The tumors on his spine have numbed his entire torso, so he has a colostomy with a bag that collects waste matter, and a catheter that drains urine. The tumor on his sacrum can actually be seen in the hole in his back, so it is uncomfortable to even lie in bed. The Wound Vac continues to gurgle and suck fluids out of the original surgical wound from the hemipelvectomy. His belly is swollen with ascites, fluid from the cancerous cells in his torso, and tube hangs out of his tummy and drips some of the watery liquid.

Andrew has said that he dreams of looking down on himself in bed, motionless, and feels like he is getting smaller, and just keeps shrinking.

2005 - Early April: In discussing his plight with his pal Ryan, Ryan asks "How do you feel?" After a moment Andrew answers "I'm confident". While we all continue to work feverishly to find a cure, and keep him alive, Andrew has begun "healing towards death" (experts say there is a huge difference between a cure (temporary), and either "healing towards life" (temporary), or "healing towards death" (permanent).

While we all scurry, with barely subdued panic awkwardly hidden (we think), Andrew realizes that his faith will save him. With the help of his friend, Ryan, and his brother, Alex, somehow Andrew "knows", and that knowing is the proof. We don't understand his bravery in being ready to go somewhere that none of us, here, have even been. Yet. We merely stand in awe of it.

2005 - April 12: 1:52pm: Andrew was born on a sunny day, and leaves us on a sunny day. The ocean breeze gently blows in from the ocean. He lived as fully as possible, always spoke the inconvenient truth, and taught us all about courage, kindness and how an imperfect human being can strive to become a better person. He showed us that to really live, it takes a lot of heart. To be truly alive, we must be fully immersed in life, and not be afraid to get banged around. When Andrew came to the end, he embraced a perfect, permanent, home that we can all choose if we want to do so.

Andrew did not go gentle into that good night; he transformed his essence gracefully, and admirably, and finally left an imperfect place to go wait for us in a perfect place of pure love.



2005 - April 24: Folks in the community participate in a "Celebration of Life" for Andrew, hosted by La Costa Canyon High School, attended by over 2,000 folks who knew Andrew, and say that he "touched their lives" in a unique way. You can see some photos of the event by clicking on the link above.

2005 - May 30: Andrew would have turned 18.

2008 - May 30: Andrew would have been 21.

2009 - May: Andrew would have graduated from college. He said he wanted to either get a PhD in Physics or start a business selling stuff on eBay. Gotta be diversified, I suppose.




TWO THINGS FOR YOUR TO-DO LIST:

1- Please perform a random act of Greatness to keep Andrew's spirit alive!

2- Please give blood in Andrew's name - see Blood Services below.

3- Please donate to the "Make a Wish Foundation".




The Number of Visits to the old Web Site, before April 12, 2005: 131,151 to the Home Page!


Please go to any blood service that is convenient for you and donate blood in Andrew's name. Every day people everywhere need blood, and supplies are always transitional. In addition, please contribute either time or money to the Make a Wish Foundation - it's a great organization that "gives a wish" to a child with a life-threatening illness.



 Please follow one of the links below, and sign up today.

 

1) Link to Make a Wish:

        CLICK HERE TO DONATE to Make A Wish

2) Link to the American Red Cross BloodServices:

        CLICK HERE TO SET AN APPOINTMENT TO GIVE BLOOD


3) Link to the San Diego BloodBank:

        CLICK HERE TO SET AN APPOINTMENT TO GIVE BLOOD



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