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Tuesday, May 18, 2004 11:47 AM CDT
John's VMA/HVA is completely normal.... I have a very special story to share which ran in the Atlanta Journal Constitution yesterday. I urge every visitor to read the story thoroughly. I honestly never thought I would be thankful to this horrid disease we all call pediatric cancer but I am thankful for one thing. I am thankful for Kristin Connor. Kristin if you are reading please know I am truly blest to have such an incredble friend. From the bottom of my heart Thank you for all you have done for our children and of course me!
Family's miracle inspires zeal to help heal others
By VIRGINIA ANDERSON
The Atlanta Journal-Constitution
Published on: 05/16/04
Kristin Connor got a get-out-of-hell-free pass, but she has chosen to linger at its doors.
She and her family believe they received a miracle in November, when a tumor on her toddler Brandon's spine disappeared on the eve of risky surgery.
For Connor and Brandon, it meant no more needles, no more surgery, no more hospitals.
But instead of walking away from the trauma of that life, Connor is running into it. She is working on a national campaign to raise millions to fund research for it, and she has met with executives of the American Cancer Society to share her vision. She also has enlisted the help of former Atlanta Braves pitcher Tom Glavine and his wife, Chris.
"You ask why couldn't I walk away? Because I can't," said Connor, 35, of Peachtree Corners. "I couldn't have. I couldn't leave that world knowing how many others are still there suffering."
Earlier this month, Connor, a lawyer with Arnall Golden Gregory, gathered six months of work and presented an argument to the headquarters of the cancer society that it needs to fund a separate division for research into childhood cancer.
The society isn't making any promises yet, but Jack Shipkoski, chief of its South Atlantic division, said the organization is seriously studying her proposals. She will meet with society officials again today.
"What we're going to do is come up with a plan of action," Shipkoski said. The group would set a fund-raising goal and timetable and raise the money from corporations and others.
"She's quite a lady," Shipkoski said. "A lot of times, people talk about things and don't act on them. She's talking it and doing it."
Shipkoski said he could see a national drive against childhood cancer happening. "We'd like to make sure we bring the right players to the plate," he said.
Connor has worked on that part, enlisting the help of Glavine, now with the New York Mets..
"There's a lot of suffering going on, and you just thank God your kids are healthy," Glavine said in a recent interview. "Right now we are just trying to raise people's awareness, because I don't think most people know there's not a specific branch dedicated to childhood cancer."
Connor also speaks at and walks in fund-raising events and plans to host a lemonade stand fund-raiser next month in conjunction with a Philadelphia girl with cancer.
Allocation of cancer research funds generally has been determined by numbers, but advocacy such as Connor's plays a role. Breast cancer advocates' success in lobbying Congress has yielded $1.66 billion since 1992 from the U.S. Army Medical Research and Materiel Command, which awards grants to universities, hospitals and other research agencies.
Childhood cancer receives no such grants. Overall funding for childhood cancer research this year is $29 million, according to the Children's Oncology Group.
Far fewer children have cancer than women have breast cancer. The COG estimates that 12,400 new cases of childhood cancer will occur this year, with 2,300 expected to die. More than 200,000 cases of breast cancer will be diagnosed; 40,000 will die.
But Connor and her supporters don't measure childhood cancer in numbers. They look at the pain and suffering in the children they love and in their families.
"The word 'cancer' and 'child' should not be in the same sentence," said Chris Glavine. "So yes, I'll be one of Kristin's little disciples, and Tommy will too."
The Glavines aren't sure what form their contributions will take. "You can give someone an autographed cap or shirt, and that might make them feel better, but when you think about all the money you can raise, money for a cure, that really could mean something," she said.
"It always catches me by surprise what name recognition will do," said Tom Glavine, a Cy Young Award winner. "But if we can use it for something good like this, then we'll do it."
Mike and Kristin Connor learned, while Kristin was pregnant with their second child, that the baby had a suspicious mass on his spine. Doctors thought that Brandon, born Sept. 13, 2001, had neuroblastoma, a rare and often deadly form of childhood cancer. Dozens of doctor visits, medical procedures and heartaches later, the Connors flew to San Francisco, where a neurosurgeon was to remove the tumor from Brandon's spine. His older brother, Ryan, stayed home with his grandparents.
The evening before the surgery, one final MRI (magnetic resonance imaging) test showed that the tumor had disappeared. The family rejoiced, and vowed that they would share their good fortune with others.
Kristin Connor's original vision was to raise awareness of and funds for neuroblastoma. In February, she expanded it to include all childhood cancers after learning that a son of close friends had relapsed with Ewing's sarcoma.
"It has been the most gut-wrenching experience of my life," Connor said of Carter Martin's battle with cancer.
Carter's parents, Scott and Leigh Ann, learned last week that the 7-year-old's cancer has spread yet again. Carter has had part of a leg amputated and has undergone brain surgery and several rounds of chemotherapy.
Leigh Ann Martin said her son's unfailing optimism gives her strength.
"I've learned so much from him throughout this ordeal," she said. "He's never complained. He never says 'Why me?' He looks like a human cutting board, and he just keeps smiling through."
Connor said she keeps thinking of Carter and his family.
"I just so painfully want all these families to have this kind of ending," she said. "When we got the news that Brandon's tumor had disappeared, when it came time to tell our friends, most of whom have children with cancer, I thought, 'How do I call them and tell them this happened unless I do something about it?' "
Wednesday, May 05, 2004 11:45 AM CST
After speaking with the doctor at length this morning I will have to ask for prayers that we are just dealing with yet another bizarre thing that will turn out to be nothing.... Basically there were two findings on John's CT the first is a thickened appendix indicitive of infection. No big deal if he starts exhibiting symotoms they will remove it. I can handle that routine kind of thing.
The second finding was alarming and confusing to Dr. Cohn, hence the need to go the X-ray board (I'll explain later)John now has pathologically enlarged bi-lateral auxillary lymph nodes. In fact at least one is measuring over 2 cm. We have been told this area is atypical (not impossible)of Neuroblastoma but not a secondary cancer such as lymphoma.
John's lungs are indeed stable...I suspect they will always be.... and I'll need to find a way to live with it.
The X-ray board is group of doctors primarily radiologists surgeons and oncologists (in our case) which reviews those unique cases when the treating doctor hasn't a clue what is going on or what to do about it. They will all put their brilliant minds together and decide the best route to take at this time... Whether it be immediate biopsy or a repeat of the scan in a couple of weeks or whatever brilliant minds might think is the best thing. We should have a decision early next week, probably because they will be awaiting results of VMA/HVA....
If you feel compelled a brief prayer for Phil and my sanity while we wait yet again to know the future of our son would be deeply appreciated....
To quote what we have been told... Radiology has read John's films as stable, Dr. Cohn looked at the films as well and will be presenting them to X-ray board in order to determine what to do next. Whatever that means..... However, it seems nothing glaring is popping out at the docs, hopefully everything is indeed stable, and X-ray board (whatever that might be) will agree. It was a long day, and John has indeed begun to assert himself as individual. I'll go into detail sometime after I sleep for more than two hours.
The coping process is on hold for the time being. I can't seem to cope at all with the news the Martin Family has received. Please remeber Carter and his family in your prayers. Please dear God give this little boy a miracle.
My heart is shattered for Carter, his family, and my dear friend Kristin Brandon's mom.
John has his quarterly scans on the fourth. I am optismistic for the first time since this whole debacle began. Optismistic does not mean I am not completely psychotic with fear.
The Coping Process… Part 3
“The wise man is he who knows the relative value of things.”
-William Ralph Inge-
What is the relative value of things? For me, the meaning behind Inge’s words has changed dramatically in the past two years. When I reflect on the relativity of life and where my son has been and what he has endured, the world slows to halt. Alas we live in a fast paced society, scampering here and there, shuttling our children to and fro, and all the while the roses are withering. I used to be one of those people who despised waiting in line at the grocery store, today I play patty cake, peek a boo, or sing a silly song with John. Every moment of waiting is now a time for bonding, every red light, every traffic jam. Nothing profound, just a simple sweet time to smell the roses and behold the three most beautiful gifts I could have ever been bestowed.
That which is relative transcends the way I view the world around me. From the obvious to the obscure; pneumonia is now a good thing relatively, it comprehensively explains the cough and fever… Likewise, inflamed livers without lesions are a good thing relatively, it explains the distended abdomen. Moreover, the fingerprints on the windows symbolize a house full of children actively engaging in childhood antics. The playroom in utter dishevel represents children playing and enjoying life as they should.
In closing, I’d like to quote Leigh Ann Martin, whose son,Carter, is battling recurrent Ewing’s Sarcoma. “Thank you, God, for another day...a day that my son was healthy enough to have his chemo.” For me, none of the great philosophers through the ages have matched the relative value of Leigh Ann’s words. Clearly, nothing more needs to be stated, this sentence speaks volumes on the relative value of things, direct from a mother’s heart and soul.
Please continue to add your thoughts or reflections to the guestbook or via my e-mail address below. I have been immensely humbled by the response to date. Stay tuned for part 4….
Jen
Monday, March 15, 2004 9:30 PM CST
*DISCLAIMER* Perhaps I should have offered a disclaimer, prior to my “Coping Process” series. I began this process for several reasons, namely as a therapy for myself as well as others who might relate. I never intended to erect a wall between myself and those who do show compassion, empathy or for that matter any form of support. We have been truly blest with so many who have supported us in this journey. However, there have also been numerous people whom I thought were friends/supporters/acquaintances/co-workers etc who are simply to self-absorbed to have compassion, empathy much less offer any sort of support. I suspect most of the people who check in on John are COMPASSIONATE, KIND, and EXTREMELY LOVING members of society, hence not a fleeting outsider….
In conclusion, I am going to continue my series because it’s relevant to me and just might be to someone else. I am in no way trying to emphasize anything, however, the thoughts and feelings need an escape. I simply cannot carry them around as added baggage anymore and I will not walk on eggshells in order to protect the feelings of “fleeting” people who will not even try to understand. I need to continue my coping process, if only for myself.
The Coping Process… PART 2 PART 1 Below....
Perhaps my last entry left everyone in a bit of shock. I suppose that was part of my intent, to put the thoughts I’ve never dared to say “out there.” Another, intent of mine was to feel out my level of insanity. By the response I received via the guest book and private e-mail, I am feeling a bit more, no, a ton saner. It truly is a remarkable feeling to know that your sanity has not been broken.
I’ve never credited myself as being a deeply spiritual person. Please don’t misunderstand, I am a Christian, I still read the Bible, I pray…correction beg, plead and debate with God, and I do feel it is my limited spirituality that has kept me afloat during the most difficult of moments.
With that said I want to elaborate on an infamous saying Marie reminded me of in the guest book. I suspect each and every parent of a child with cancer has heard
I suspect the “strong” statement from above, is another prime example of my theory the outside world simply hasn’t clue how to deal with us. I do not believe God called upon me to be a mother of a child with cancer because I am strong. I do not believe God calls the qualified, but rather, God qualifies those who call upon him. For me, any ounce of strength I might have comes from the man above and from the love I have for my son.
We all love our children, but those on the “outside” haven’t a clue of the true depths of love, and the strength which can be gained by love alone.
Please continue to add comments and reflections in guest book, I need my sanity reinforced.
Jen
*I felt the desire to add a couple more thoughts to my musings, Please sign the guestbook with your reflections on the subject. I think the coping process needs to be a bit more on the forefront of all of our journeys.*
The Coping Process: Fear and Joy… In simple terms Cancer Sucks Part 1
I suspect all parents of children with cancer will agree there are many facets of the coping process. In my experience there was the diagnosis, followed by treatment, followed by a brief remission, followed by who knows what. In some respects all the facets are the same. At times the fear is overwhelming perhaps paralyzing. Cancer kills more children than any other disease “will my child be next?” At other times hope is the driving force behind life, children are cured “perhaps my child be on the positive side of the statistics.”
When John was originally diagnosed I simply could not believe that a malignant tumor could be overtaking his abdomen. For all intensive purposes the child was healthy, and now we are going to pump poison into his tiny little body in an attempt to kill the cancer taking over his body. Within moments of the dreaded chemotherapy being pumped into John’s veins he became a sick child. I will never forget the images and thoughts…how could loving parents possibly sign the consents to turn their healthy little boy into a toxic waste dump. If it weren’t for the cancer, we’d be in prison. Clearly, these thoughts are irrational, but nonetheless they plague my mind to this day.
Next came surgery. I simply haven’t a clue if there is any way to adequately prepare any human being much less a parent, for what the child will look like after a nine hour tumor resection. We knew we had no other choice, but to consent to an operation and recovery which is tantamount to torture is testing the limits of a parents coping process. Six long days we witnessed a machine breathe life into John’s body, six long days in critical condition, six long days I will never forget. The images are forged in my brain, the thoughts wander to the surface from time to time, I’ll never escape them nor would I want to. They symbolize the lengths to which John has fought to remain here on earth for another day.
Relatively clean scans came next. Can we really breathe? Yes and no, the fear is still omnipresent, however, the hope begins to shed it’s light a bit more with each and every passing day.
New tumors, shock dismay and the horrible feelings that all that has been done to your child was worthless. The nightmare truly never ends, but this put a new perspective on the nightmare. Another surgery, in which, absolutely nothing is accomplished, with the exception of two more scars. Great now my son’s body looks like a worn out cutting board. Each and every glimpse brings tears to my eyes of both joy and hate. Joy because he’s still here to for me to see why I hate what the cancer has done to my perfect little baby boy.
It’s been over a year since those new tumors were found, and while we are certainly beyond overjoyed everything has remained stable to date, clearly the future is not as bright as it would be with “clean” scans.
The aftermath of chemotherapy, is one to be noted. Unlike the aftermath of a tornado or other natural disaster, this aftermath can’t be kindly cleaned up and made to look and act like new. The very nature of chemotherapy, is to kill rapidly dividing cells. For children, all cells are rapidly dividing, as growth is a cornerstone of children. Oftentimes the cure kills, and if the child is fortunate enough to survive the cure, the child is likely left with a host of “long-term effects.” These effects range from mild in nature to very severe and life-threatening. Both John’s heart and lungs have taken a beating, and while we have symptoms and progression under control with medication, the damage can not be undone. Once again parents of children with cancer are faced head on with fear and joy. Fear of what damage the cure might cause and joy that the cure might just buy one more day.
We continue to live life hoping for John’s complete healing of cancer. We also live life fearing the return and/or progression of the cancer. Every little “virus” signals the alarms and the fear comes to the surface with tenacity. We haven’t a clue what the future holds so for today and all the today’s to come we shall cherish the gift of another day that God has bestowed upon us.
I honestly don’t think MOST of the “outside” world has a clue how to deal with us. I know because I lived on the “outside” for many years. We are changed, we live knowing without a shadow of a doubt how precious life is, and how fast the life of our very young child can ripped from our arms. We’ve seen it happen way too many times, and fear the day it might be us. I never thought life could be so difficult yet so rewarding in the very same instant. I no longer relate much to those on the “outside” albeit I try to keep my mouth shut and listen to them tell me how thankful I should be, when they haven’t a clue how thankful I really am for living a life full of fear and joy. I forgive the people on the “outside” because they haven’t a clue of our life or what they do unto us.
Monday, March 8, 2004 7:08 PM CST
*I felt the desire to add a couple more thoughts to my musings, Please sign the guestbook with your reflections on the subject. I think the coping process needs to be a bit more on the forefront of all of our journeys.*
The Coping Process: Fear and Joy… In simple terms Cancer Sucks
I suspect all parents of children with cancer will agree there are many facets of the coping process. In my experience there was the diagnosis, followed by treatment, followed by a brief remission, followed by who knows what. In some respects all the facets are the same. At times the fear is overwhelming perhaps paralyzing. Cancer kills more children than any other disease “will my child be next?” At other times hope is the driving force behind life, children are cured “perhaps my child be on the positive side of the statistics.”
When John was originally diagnosed I simply could not believe that a malignant tumor could be overtaking his abdomen. For all intensive purposes the child was healthy, and now we are going to pump poison into his tiny little body in an attempt to kill the cancer taking over his body. Within moments of the dreaded chemotherapy being pumped into John’s veins he became a sick child. I will never forget the images and thoughts…how could loving parents possibly sign the consents to turn their healthy little boy into a toxic waste dump. If it weren’t for the cancer, we’d be in prison. Clearly, these thoughts are irrational, but nonetheless they plague my mind to this day.
Next came surgery. I simply haven’t a clue if there is any way to adequately prepare any human being much less a parent, for what the child will look like after a nine hour tumor resection. We knew we had no other choice, but to consent to an operation and recovery which is tantamount to torture is testing the limits of a parents coping process. Six long days we witnessed a machine breathe life into John’s body, six long days in critical condition, six long days I will never forget. The images are forged in my brain, the thoughts wander to the surface from time to time, I’ll never escape them nor would I want to. They symbolize the lengths to which John has fought to remain here on earth for another day.
Relatively clean scans came next. Can we really breathe? Yes and no, the fear is still omnipresent, however, the hope begins to shed it’s light a bit more with each and every passing day.
New tumors, shock dismay and the horrible feelings that all that has been done to your child was worthless. The nightmare truly never ends, but this put a new perspective on the nightmare. Another surgery, in which, absolutely nothing is accomplished, with the exception of two more scars. Great now my son’s body looks like a worn out cutting board. Each and every glimpse brings tears to my eyes of both joy and hate. Joy because he’s still here to for me to see why I hate what the cancer has done to my perfect little baby boy.
It’s been over a year since those new tumors were found, and while we are certainly beyond overjoyed everything has remained stable to date, clearly the future is not as bright as it would be with “clean” scans.
The aftermath of chemotherapy, is one to be noted. Unlike the aftermath of a tornado or other natural disaster, this aftermath can’t be kindly cleaned up and made to look and act like new. The very nature of chemotherapy, is to kill rapidly dividing cells. For children, all cells are rapidly dividing, as growth is a cornerstone of children. Oftentimes the cure kills, and if the child is fortunate enough to survive the cure, the child is likely left with a host of “long-term effects.” These effects range from mild in nature to very severe and life-threatening. Both John’s heart and lungs have taken a beating, and while we have symptoms and progression under control with medication, the damage can not be undone. Once again parents of children with cancer are faced head on with fear and joy. Fear of what damage the cure might cause and joy that the cure might just buy one more day.
We continue to live life hoping for John’s complete healing of cancer. We also live life fearing the return and/or progression of the cancer. Every little “virus” signals the alarms and the fear comes to the surface with tenacity. We haven’t a clue what the future holds so for today and all the today’s to come we shall cherish the gift of another day that God has bestowed upon us.
I honestly don’t think MOST of the “outside” world has a clue how to deal with us. I know because I lived on the “outside” for many years. We are changed, we live knowing without a shadow of a doubt how precious life is, and how fast the life of our very young child can ripped from our arms. We’ve seen it happen way too many times, and fear the day it might be us. I never thought life could be so difficult yet so rewarding in the very same instant. I no longer relate much to those on the “outside” albeit I try to keep my mouth shut and listen to them tell me how thankful I should be, when they haven’t a clue how thankful I really am for living a life full of fear and joy. I forgive the people on the “outside” because they haven’t a clue of our life or what they do unto us.
Jen
Saturday, March 6, 2004 7:34 PM CST
The Coping Process:
I suspect all parents of children with cancer will agree there are many facets of the coping process. In my experience there was the diagnosis, followed by treatment, followed by a brief remission, followed by who knows what. In some respects all the facets are the same. At times the fear is overwhelming perhaps paralyzing. Cancer kills more children than any other disease “will my child be next?” At other times hope is the driving force behind life, children are cured “perhaps my child be on the positive side of the statistics.”
When John was originally diagnosed I simply could not believe that a malignant tumor could be overtaking his abdomen. For all intensive purposes the child was healthy, and now we are going to pump poison into his tiny little body in an attempt to kill the cancer taking over his body. Within moments of the dreaded chemotherapy being pumped into John’s veins he became a sick child. I will never forget the images and thoughts…how could loving parents possibly sign the consents to turn their healthy little boy into a toxic waste dump. If it weren’t for the cancer, we’d be in prison. Clearly, these thoughts are irrational, but nonetheless they plague my mind to this day.
Next came surgery. I simply haven’t a clue if there is any way to adequately prepare any human being much less a parent, for what the child will look like after a nine hour tumor resection. We knew we had no other choice, but to consent to an operation and recovery which is tantamount to torture is testing the limits of a parents coping process. Six long days we witnessed a machine breathe life into John’s body, six long days in critical condition, six long days I will never forget. The images are forged in my brain, the thoughts wander to the surface from time to time, I’ll never escape them nor would I want to. They symbolize the lengths to which John has fought to remain here on earth for another day.
Relatively clean scans came next. Can we really breathe? Yes and no, the fear is still omnipresent, however, the hope begins to shed it’s light a bit more with each and every passing day.
New tumors, shock dismay and the horrible feelings that all that has been done to your child was worthless. The nightmare never ends, but this put a new perspective on the nightmare. Another surgery, in which, absolutely nothing is accomplished, with the exception of two more scars. Great now my son’s body looks like a worn out cutting board. Each and every glimpse brings tears to my eyes of both joy and hate. Joy because he’s still here to for me to see why I hate what the cancer has done to my perfect little baby boy.
It’s been over a year since those new tumors were found, and while we are certainly beyond overjoyed everything has remained stable to date, clearly the future is not as bright as it would be with “clean” scans.
The aftermath of chemotherapy, is one to be noted. Unlike the aftermath of a tornado or other natural disaster, this aftermath can’t be kindly cleaned up and made to look and act like new. Both John’s heart and lungs have taken a beating, and while we have symptoms and progression under control with medication, the damage can not be undone.
We continue to live life hoping for John’s complete healing of cancer. We also live life fearing the return and/or progression of the cancer. Every little “virus” signals the alarms and the fear comes to the surface with tenacity. We haven’t a clue what the future holds so for today and all the today’s to come we shall cherish the gift of another day that God has bestowed upon us.
I honestly don’t think MOST the “outside” world has a clue how to deal with us. We are changed, we live knowing without a shadow of a doubt how precious life is, and how fast the life of our very young child can ripped from our arms. We’ve seen it happen way too many times, and fear the day it might be us. I forgive the people on the “outside” because they haven’t a clue of our life or what they do unto us.
Jen
Monday, December 22, 2003 8:18 PM CST
And how’s the other two holding up?
It has been some time since I have updated, partially because every time I sit down to type an update, I get way to emotional. John is doing well, we have continued with the high dose steroid regimen and to date have had only one brief bout with “wheezing” and difficulty breathing. What a change! We decided to wait until after the New Year to do more scans and will rescan on the sixth of January. Hopefully, the next set of films will not weave a web of more confusion, but I will be prepared to deal with whatever comes our way. Oftentimes, I find myself pondering over words doctors use to describe their feeling when they interpret John’s films. After the last films were reviewed the end outcome was --I am concerned about the abdominal findings, however, since we continue to monitor John very closely, I am not significantly concerned at this moment. I have gone over this statement in my mind a million times and truly can not come to grips with it. I suppose as is always the case the truth will be revealed in His time not mine. Nonetheless, I still find myself in heated debates with God, begging him to speed up the process. John is still living life to it’s very fullest, and does seem to be a bit more subdued than his older brother was at this age. Don’t get me wrong the tenacity is fierce and the temper, well you better watch out. The other night he was simply obsessed with trying to hit Rebecca and Philip over the head with his Lincoln Logs. I have fallen prey on more than one occasion to the Lincoln log over the head, and am now very cautious while my back is turned to him. John is still not talking, but I am certain with time his voice will encompass this house. He clearly understands most everything we say or ask of him, which reassures me the vocalization is just a matter of time.
I also wanted to share a very touching experience.. On Saturday evening a gentleman came to our door, clearly I did not recognize him, but did notice a police badge embroidered on his jacket, so I proceeded to open the door. This gentleman handed me an envelope and told me that Father Nangle had asked him to deliver it. It wasn’t until he left did I venture to open the envelope. Inside I found a very generous gift from the Chicago Police Chaplin’s Ministry. I proceeded to read the letter enclosed and found the gift came from the many fine men and women who serve the Chicago Police Department and Father Nangle’s ministries. They donated both their time and money to brighten our holidays, to say I was immensely humbled is an understatement. Father Nangle, has worked miraculous deeds for the CPD and is tireless in his devotion. He has done so much for our family since John was diagnosed from the heartfelt prayers at police masses to the generous gift of the other night, for these gestures of the heart we will be forever grateful.
And now for the promised year in review of both Rebecca and Philip:
Rebecca is now seven and is enjoying second grade. She is again actively involved in Girl Scouts as a Brownie, and does so enjoy the companionship of the girls in her troop. Yes the cookie sale is right around the corner! Rebecca has also developed an affection for what I view as classic children’s literature. We have recently completed reading both Ramona and her Father and Charlotte’s Web and look forward to an exiting year of new and more difficult reading adventures. Math still seems to be Rebecca’s strongest academic subject, however, her Spanish has developed beyond that of mine. Rebecca’s favorite pastime continues to be creating artworks or “masterpieces” as she will say. As a matter of fact, she recently won the art equilevent of the science fair on the local level, with her Reflections artwork. Her project will move on to the regional competition next month. Rebecca will also be making her stage debut this holiday season, as the narrator in the play ‘Twas the Night before Christmas. All in all 2003 has proven to be a year rich in both intellectual and spiritual growth for Rebecca.
Philip is now five and is trying to enjoy the Kindergarten experience. Clearly Philip enjoys “play time” and recess over the academic endeavors school has to offer. I am confident that as he continues with his school career he will come to recognize the vast fruits an education will bring his way. Actually, we have begun to see a slight passion for science break through. He does enjoy pretending he is a scientist solving the many theories that have plagued the minds of great scientists across the world, i.e. why did the dinosaur become extinct? As Philip promised last year, the tricks have begun! He spent a good deal of his spare time over the summer riding his bicycle and performing his tricks. Albeit, Philip’s tricks are still rudimentary in nature I would like to encase him in bubble wrap prior to his “performing” However, for some reason I do not think he would be too keen on my idea. I look forward to the watching him grow and develop over the next year as he begins to carve his niche into society.
Merry Christmas,
Jen
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.
And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.
So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.
To Donate to the Children's Neuroblastoma Cancer click here CNCF
To visit all the families participating in this effort click here Familes Say Thank You
To link to all the media coverage Lunch For Life has picked up Click here In The News
To visit Mark's diary click here Dad's diary
Please take note Mark Dungan launched Lunch For Life on Oct 1st 2003. His daughter Sydney is fighting NB IV.
To visit The NBC 5 Chicago news brief Click here NBC 5 News Brief
Saturday, November 15, 2003 9:39 AM CST
Dare to be a Daniel
Sorry it has taken so long…but I just don’t know what to say or feel anymore, which makes it difficult to type out an update. First off, John’s Chest films are indeed stable. I suppose I should rejoice over stability, but I really desire films that are unremarkable, free of the nodules that have plagued the lung fields for almost a yaer now. The Head and neck Ct revealed a thickening in the mucosal lining—nothing of much substance so I am very thankful over that piece of good news. John’s pelvis is unremarkable…. At least one area of his body respects my wishes. His abdominal CT was certainly not what I had hoped for. John’s primary tumor bed is stable with no changes since last go around.. but there seems to be new areas of concern. Perhaps lymphadenopathy, or something else. Of course, the new areas of concern are not open and shut or textbook NB so once again we will proceed with the watch and wait approach. While I am confident all John’s doctors have his best interest at heart, it proves to be very stressful watching and waiting.
Otherwise John seems to be doing very well medically as of late. The “asthma-like” symptoms seem to be completely under control, with the addition of the high dose steroids. And, although this course of treatment carries a good deal of risk we hope to be able to wean him down to moderate doses in a year or two, at which point I will feel much more comfortable.
As of late John has grown very fond of our Cedarmount Kids videotapes. We have accumulated all of the wonderful tapes, over the years, but true to John form he seems to have a favorite song. Dare to be a Daniel is rewound over and over again, for his viewing pleasure. Oftentimes, we (I should say I) sing and dance to the song together. After repetitive viewing and listening to Dare to be a Daniel, over the past 10 days or so, it finally hit meÂ…. IÂ’ll end this journal entry with the chorus, with the hope it might touch others hearts and souls as it has touched and inspired mine. Dare to be a Daniel, Dare to Stand alone, Dare to Have a Purpose Firm, Dare to Make it Known.
Daring to be a Daniel,
Jen
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.
And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.
So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.
To Donate to the Children's Neuroblastoma Cancer click here CNCF
To visit all the families participating in this effort click here Familes Say Thank You
To link to all the media coverage Lunch For Life has picked up Click here In The News
To visit Mark's diary click here Dad's diary
Please take note Mark Dungan launched Lunch For Life on Oct 1st 2003. His daughter Sydney is fighting NB IV.
To visit The NBC 5 Chicago news brief Click here NBC 5 News Brief
Saturday, October 25, 2003 9:53 AM CDT
As Of Saturady October 25th 2003 Lunch For Life is nearing 100,000 dollars in donations.
The John update is below the Lunch For Life update.
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.
And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.
So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.
To Donate to the Children's Neuroblastoma Cancer click here CNCF
To visit all the families participating in this effort click here Familes Say Thank You
To link to all the media coverage Lunch For Life has picked up Click here In The News
To visit Mark's diary click here Dad's diary
Please take note Mark Dungan launched Lunch For Life on Oct 1st 2003. His daughter Sydney is fighting NB IV.
To visit The NBC 5 Chicago news brief Click here NBC 5 News Brief
To Move a Mountain
To move a mountain,
It seems absurd.
Until that day one took a stand.
Through his vigilance the message was heard.
It started with a prayer,
And evolved to a plea.
Soon the idea was alive.
"Lunch for Life" was our cry to be free.
We have seen the darkness,
Even faced it's wrath.
Yet we have bonded together.
One family, walking a path.
We will make a difference,
There is no doubt.
May God hear our will,
And stamp this disease out.
- written by Tony Pasma, dad to Roxie, stage IV neuroblastoma...
I have hesitated updating John’s page with his status, for some time now. I suppose every time I sit down to do it, I just can’t seem to get the thoughts translated into words.
We have had issues with his breathing, and I suppose this might become “something” I just need to deal with. I guess I am just fearful he is a ticking time bomb ready to explode. Other than his ongoing issue with severe asthma-like symptoms, he is a cheerful and active toddler.
Just the other day John decided he desired acrobatics in his life. In the ten seconds I turned my head he had climbed onto the coffee table and proceeded to jump onto the couch. I have probably said this one too many times, but I want a five minute glimpse into his mind.
The pre-scan jitters have already set in and I am notably nervous and apprehensive this time around. Perhaps John’s newfound disdain for the Children’s has come into play. On approach to the parking garage at Children’s he starts screaming, and simply doesn’t relent until we exit the building. Gone are the days of a passive infant, we now have a rather intelligent toddler, who is able to make the connection, with unpleasant prior experiences. I suppose, between the uncertainties of the future, the emotional impact on John, and the post-scan chaos, there a rationale behind my pre-scan jitters.
With that said please start lifting up the prayers, not only, for John’s well-being, but also, for the wisdom of all John’s doctors. We really hope and pray John’s body will be rid of any and all abnormalities, but I have come to realize that I must accept the path that is chosen for John. I cannot claim to know or even understand the mind of God. My mind is simply not that of a divine creator. Oneday all will be revealed at which point I might be able to wrap my humanness around the complexity of the world we live in and the situations we are faced with. Until that time, I have a purpose….
With much gratitude,
Jen
Wednesday, October 15, 2003 9:46 AM CDT
LUNCH FOR LIFE UPDATE
As Of Sunday OCT. 19 Lunch for Life has raised over 80,000.
Friday, October 10, 2003
Well, we aren't going to reach $10 million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Austrailia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country and, obviously, beyond.
And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children. I hope you'll click on the link listed below and visit some of the websites of these children. They look just like your children -- angelic, healthy, happy. They're normal kids just like everyone else's kids...except for this monster that is inside of them. This monster can kill them, and does kill too many of them. It is nothing less than devastating to those who survive it, and it turns the lives of their families upside down. Yes, Lunch for Life is all about beating this monster. Which brings us back to the money. I wish it wasn't about money. I hate asking for money. But we, the PARENTS, have to fight for our kids because if we don't, no one will, so we have to ask for your money, and for the money of your friends, their companies...whomever will give so that our children have a chance to live. It stinks all the way around. But we have to do what we have to do. If I have to ask for your $5 (or more if you are so inclined) so that these kids can grow up, graduate from highschool, live their lives, well, then I guess I have to.
So our Lunch for Life effort will continue beyond Day 10 because it has to. Remember, we as parents of these kids have to change the world. We may not have been able to do it in 10 days, but mark my word, we'll do it.
To Donate to the Children's Neuroblastoma Cancer click here CNCF
To visit all the families participating in this effort click here Familes Say Thank You
To link to all the media coverage Lunch For Life has picked up Click here In The News
To visit Mark's diary click here Dad's diary
Please take note Mark Dungan launched Lunch For Life on Oct 1st 2003. His daughter Sydney is fighting NB IV.
To visit The NBC 5 Chicago news brief Click here NBC 5 News Brief
To Move a Mountain
To move a mountain,
It seems absurd.
Until that day one took a stand.
Through his vigilance the message was heard.
It started with a prayer,
And evolved to a plea.
Soon the idea was alive.
"Lunch for Life" was our cry to be free.
We have seen the darkness,
Even faced it's wrath.
Yet we have bonded together.
One family, walking a path.
We will make a difference,
There is no doubt.
May God hear our will,
And stamp this disease out.
- written by Tony Pasma, dad to Roxie, stage IV neuroblastoma...
I would also like to take this opportunity to remind all to remember John on Nov 4th. Perhaps we should all start lifting up the prayers. His next scans Head through Pelvis will occur on that day.... I really hope and pray we receive the news we have waited all to long for NO ABNORMALITIES! However, Whatever the Lord wills for us we will endure with humility... I have a purpose.
With much Gratitude,
Jen
Thursday, October 2, 2003 9:07 AM CDT
Chicago area residents check out the Pioneer Press next week they have committed to running the story!!!!
A CALL TO ACTION FROM PARENTS WITH A PURPOSE
It is October 2, 2003, a day that will live in the hearts and the memories of John, Philip, Rebecca, Philip Jr. and I for the rest of our lives. Today is the day that will mark a significant change in the world of neuroblastoma. With your help we will level the playing field and give research the necessary boost to obliterate this human tragedy from this earth. I plead with all of you, that today you help our family -- and therefore the families of Neuroblastoma victims all over the country. This will only work once and this is my best hope at making a truly significant impact while I still have the opportunity to do so.
The goal : 10 million dollars in ten days
The action: I ask you to make a donation to the Children's Neuroblastoma Cancer Foundation in the amount of five dollars - just the cost of lunch for one day - right now. Please do it for John, for the thousands of parents crying for a cure, or do it for the thousands who are yet to be diagnosed. Do it because you are our friends and family. Whatever reason you find. It can be because of the statistics - because neuroblastoma is greatly under funded. Do it because of our story. Do it because of somebody else's story.
Whatever your reason, please do it, and do it now.
Think of it as giving up one lunch this month for a cause that is important to some one who is close to you. I am only asking for five dollars that will be used for curative research. Hopefully, five dollars is an amount that no one will miss but that could make the difference in thousands of lives. If you have decided that this is your cause, that you are inspired to do more, then please give now. Give up one lunch a month for the year, for the rest of your life, whatever your tolerance is to give to a cause that you believe in.
I then ask that you call 5 of your best friends. Friends that you can trust and people that will do this favor for you as you have done for me. Give them the information, tell them the story, inspire them and ask them to do the same as I have asked you. Ask them to call five of their friends and pass on the challenge. This will only work, it will only make the needed impact, if we go ten levels deep in this web of giving. If you can find more people to give, great, if not that is okay. Some of you will tell hundreds and for that I am truly grateful, but no matter what, I need you to be diligent. Please follow up with your five best hopes and keep the giving growing. We have to make sure that we inspire our five friends to follow in our footsteps. Pick five friends that you know will do it and that will continue the effort. Follow up with them. Use this as your opportunity to stay in touch with someone that is close to you. Everybody must inspire the group below them and follow up. I know it is work. I know I am asking a lot. But this could do it. This could make the difference today, right now. Honestly, for me it would be worth the five dollars and five phone calls just to see if the theory behind a chain letter actually works. Nevertheless, I implore you. You have asked how you can help. Help me change the world over the next 10 days.
Your donations will go to research to cure neuroblastoma. It goes to an organization that is lead by parents and medical professionals dedicated to the cause whose sole purpose in life is for the love of their families, these children, and the cure of neuroblastoma. It is a tax deductible contribution to you. You can give directly to the CNCF, it is a secure web site.
or
You can mail your check to this address:
CNCF
P.O. Box 6635
Bloomingdale, IL 60108
or
You can call this 800 number and give your gift by phone
1-866-671-2623
or
If that is not enough you can call me and I will have a volunteer call you back for the donation.
1-773-631-9050
We can do this. It isn't only about the five dollars, it is about your five friends. That is the tough part, but it will be what makes the difference.
Let's take a stand together. From the bottom of my heart, I thank you once again for helping me. I don't have the words but I can tell you that it makes all of the difference in the world to both me and my family. Just imagine, we are now a part of changing the world, saving thousands of children's lives, and we did it for five dollars.
Wednesday, October 1, 2003 10:45 AM CDT
To Sleep….Perchance to Dream
Oh how I miss the more simple times in life. A dream is a thing of past and I long for the day that I might once again delve into the deep sleep that allows one to dream.
On to John’s films… Dr. Green is unimpressed with the progress being seen in John’s lungs. I am too spent to get into the nitty gritty, of it all, but the bottom-line is although, we are seeing improvements, which is promising, nothing is resolved. In addition, we have been following a soft tissue prominence in John’s abdomen since Feb. I believe. This appears to have become denser. The mesenteric nodes also appear more prominent than in July. Not exactly what anyone was hoping for. I should know tomorrow what the exact game plan is. The radiology report suggests we keep a close eye on these areas with follow-up CT’s.
For now, John was put on very high dose inhaled steroids. John’s pediatrician has NEVER seen a child of any age on such high doses and he has been practicing medicine for 25 years. And as always everything comes with a price… hopefully we can get his back down to the lower doses before they cause any long-term issues.
Today I will take of John and tomorrow I hope to aide in changing the world.
Stay tuned for further details,
Jen
Tuesday, September 30, 2003 7:06 PM CDT
I promise to update as soon as we get our computer glitches fixed. I hate this laptop! Hopefully tomorrow morning and as always we have just a bit more grey areas after Monday's all expense paid visit to the plush and elegant Children's Memorial Spa and retreat....
Jen
Wednesday, September 10, 2003 8:47 AM CDT
Good, Bad, or Neither.. You Pick
I tried to post this last night but could not get onto the site, sorry for the delay.
Today proved to be both interesting and a total waste of time and energy. Since John was actively wheezing it was decided that we will return on 29th for further assessment of the chest and abdomen and pelvis, a repeat of labs, and physical exam. Nevertheless we still did labs and a physical exam. The CBC revealed that perhaps the CO2 issue is starting to spill over into the volume and width of the Red Blood Cells. A RBC morphology was run and we should have results tomorrow. We should also have all the panels back tomorrow, but frankly I’m not too worried about those yet. John would not urinate so I ‘ll have to run a urine sample down sometime this week.
On to the interesting, since John was actively wheezing I had the opportunity to address the lung problem situations we are encountering. Sometimes ignorance just may be bliss, however, this is our son and I will die by my motto Knowledge is Power. Anyway Dr. Cohn related her feeling on John’s breathing problems and she actually told me she felt the majority of his problems were the two right hillar masses (that supposedly were not there in July–even the radiology report read completely resolved) and nodules ,however, after actually looking at the films and comparing them to his normal chest CT’s from last year there is clearly still “something there” They do not feel they are masses but quite certainly do not know what they are seeing. We will be trying to figure something out with pulmonology–Dr. Green had eluded to “ mild-moderate pulmonary fibrosis secondary to doxirubicin” in letters to the pediatrician so I will explore that with him.
I also insisted that we place a port if this keeps up. It has gotten to the point that all of John’s veins are shot. Seven sticks and forty five consecutive minutes to get the two vials of blood necessary for labs. Maybe I am overreacting but I believe that is pure torture on a regular basis. For those that know John know he is one of the most happy go lucky children around, however, the moment we step foot into clinic he screams and will not stop until we leave. He clearly associates clinic with terrible things and it must be put to end. Hopefully it won’t come to placing the port but I want the option out there if need be.
Jen
Monday, September 8, 2003 8:55 PM CDT
Please take the time say a special prayer for both JAY and BRANDON. Jay needs great results on his recent scans and Brandon will be having surgery in Oct to remove a paraspinal NB tumor. Also please take a moment to offer both families a word of encouragement or support.
BACK TO REALITY....
A week of school has gone by and the common cold has already invaded my home. While some might not think too much of the common cold it has been notorious to wreak utter havoc on John’s already comprosied lungs. So we brought out more steriods and now I have a psychotic 17 month old who is still struggling to breathe.
Nevertheless, we will be at Children’s tomorrow(to access his lung nodules and whatever else might have decided to put up stake in his body), perhaps they will figure out how to help him breathe easier. Although I don’t really expect Dr. Cohn to have any real answers (just not her expertise) I hope she will at least take the steps to ask someone who might have the answers.
Hopefully we will have some kind of answers tomorrow, if not Wednesday the latest.. I promise to update with GOOD (where’s the wood I need to knock) news as soon as I hear.
The following is an update that I had failed to post...
John has been successfully introduced to finer aspects of life– sweet tea and good ole Southern BBQ.
We left Friday morning at about 5:00 AM and arrived in Dresdan TN at about 1:30 PM. Upon our arrival we stopped at Sunset cemetery to greet Grandma Manda (my mother’s mom) and Meme. Gosh, how I wish grandma was still here, it’s has been almost 20 years and I still miss her dearly.... We then headed over to the hotel. Of course, suppertime (as Aunt Vivian calls it) was right around the corner. Aunt Vivian is my great aunt and will 90 in two weeks. She made all the “fixins” for 20 people on Friday night. It seems she has more energy than me.. And she is still as sharp as a knife.
Saturday was the 13th annual reunion of the descendants of Thomas Dunn and Mary Elizabeth Covington(they would be my great-great grandparents). It never ceases to amaze me how many people make the journey home (Sharon, TN) every year. My great grandmother Cordie (Meme) was a truly the family matriarch (ok well at least in my eyes). Meme left this earth to reside in heaven back in 1982, but the impact she made on this earth is very apparent to me. Meme is the mother of five children Avis, Vivian, Ida Bell, Russell, and Ray. Aunt Avis passed away just two years ago at the age of 92. Vivian still resides in Dresdan Tn. Her husband Uncle Uver passed away in 1982. Ida Bell (age 86) resides in the greater St. Louis area with her husband the Rev. Mac Martin. Russell (age 80) (my grandfather) moved to Dresdan five years ago from Chicago with his wife Irma and daughter Elizabeth. Ray (age 78) still resides in Chicago with his wife Margaret. All of Cordie’s living children made the trip home to attend the reunion. In my ever so humble opinion Cordie lived an exceptional life and made a lasting impact on all of her descendants.
Anyway the food was great, we just don’t have access to good ole Southern cookin’ in Chicago. And the sweet tea-- well I’m desperate to recreate it. I keep ending up with sugar water. I am quite certain there is a secret process that I am not privy too. Is it possible that I can screw up boiling water and sugar, steeping a tea bag, and adding more water.... time and time again?
We made the 500 mile trip home on my birthday–yep 21 again. We then successfully (well, almost – I was a nervous wreck) introduced John to wonderful world of sailing. He slept for about half of our intro four hour tour of the lakefront, and seemed kind of perplexed for another hour, but during the last hour he seemed to enjoy the different view of the world.
On the 24th we celebrated Rebecca’s seventh birthday–Hmm I just might be getting older! And this past weekend we headed up to St Joseph MI and Michigan City, IN for a port to port race. Rebecca and Phil had a great time as did Phil and I. John spent the weekend with Phil’s parents and is being spoiled. Today (Sept 2nd) was the first day of school–Hip Hip Hooray– and both Phil and Rebecca are now gone all day.. What will John and I do with ourselves? Phil did, however,
inform me he will not be returning to that place tomorrow, which should make for a very interesting morning.
Anyway John has been doing good---- I think.. We switched his meds around a bit for his lungs because the pulmonologist didn’t feel he was getting enough oxygen into the lower lobes and there was quite a bit of hyperluceny in the hillar region of the right lung ..Every doctor that has looked at his films has a different opinion, or something else to add, which one do you believe??? Anyway, I guess for now we will repeat the films on Sept. 9th at Children’s and go from there, perhaps this set will give someone a real clue.
Jen
Sunday, July 27, 2003 0:09 AM CDT
Added in Aug 4th
John has finally been introduced to the finer aspects of life--sweet tea and good ole Southern BBQ. We are home and I'll post update in the next day or two.
New Pictures added July 27th and somehow I found my way into a picture
Yes we are alive!! No news is generally good news. We are all finally home and reunited in Chicago. I'll update tomorrow or the next with details of all our adventures.
I do, however, have a prayer request for the Connor family. Although I have met the Connors, Kristin has been an absolute lifesaver in some of my most desperate moments with John's care. She has not only been there to listen to me rant and rave but also gave me the little nudge I needed to get second and thrid opinions when I was paralyzed with fear. Her 22 month old son Brandon was born with NB and for almost two months has been complaining of pelvic pain along with low and high grade fevers. They are headed out to San Fran for a MIBG on Aug 11 as well as a meeting with a neurosurgeon. Please remeber Brandon in your prayers.
Added in July 27th at 9:00 PM
Home Sweet Home!!! Let me backtrack with the highlights of all of our wonderful adventures.
July 12th
The kids and I dropped Phil off at Monroe Harbor at 9:00 AM. Erliechda (translation lighten up) set sail for Mackinac Island at 2:15 PM. Boo and Dzia came to pick John up at about 2:00.
July 13th
Rebecca, Phil, and I left about 5:00 AM destination Mackinaw City. We arrived in Mackinaw City just after 1:00 PM and caught the ferry to the island. Upon departing the ferry, we made our way to the Island House Hotel to check in. Of course the kids wanted no part of taking in the island then but rather chose to go swimming. After an hour or so in the pool I convinced them we needed to go shopping before dad (Phil hates shopping) got in. We grabbed a bite to eat and off to Main Street.
July 14th
We (Bec, Phil Jr and I) started the day down at the Chicago Yacht Club tent to see when Erliechda called in at the 45th parallel. Due to very light winds the race was slow going this year. Erliechda called in at the 45th parallel at about 2:30 AM which meant they probably would not be in until around 2:30 PM. We then headed off to breakfast at which point Phil and Bec decided they wanted to rent bikes to tour the island (remember Mackinac Island has no cars, only horses and bikes). So after breakfast it was off to the one of the many bike rental facilities. Of course Bec and Phil left me in the dust and I spent the better part of two hours trying to find them. After the biking escapades I thought it fine time to grab some ice cream and fudge (I bought three pounds of fudge and didn’t have any left to take home-maybe I have an fudge obsession problem). We then headed over to the marina to watch the boats come in. Erliechda made it to the marina at about 2:00 PM which put them at a 1:00 PM finish. Consequently they finished middle of class and fleet. They were hoping for a better finish but I for one am proud of them. Bec, Phil Jr., and I joined the guys and boat and of course the kids had to go for a dip in the freezing cold lake. I couldn’t resist pushing hubbo into the lake with them. We spent about an hour on the boat and then it was time to drop Bec and Phil off at the babysitter, and for Phil Sr. to take a nice warm shower. Phil and I then headed out to dinner.
July15th
Wow what a day!! We were off to explore the island. We began our day at the butterfly house and then we decided to rent our very own horse driven carriage for a tour of the island. Phil drove the carriage which was guided by I am sure the slowest horse on the island. Interestingly enough our horses’ name was John. After our carriage ride we went back to the hotel for the annual Mount Gay Rum party. Shortly thereafter, it was time to drop Bec and Phil off at the babysitter so Phil and I could meet the crew of Erliechda at the Mission Point Dining Room for dinner. Thank You Stan and Natalie for a very memorable evening!
July 16th
Phil and kids started the day taking Erliechda back to Mackinaw City for temporary dockage. We revisited the Butterfly House and took in a couple more sights and at about 3:00 headed over to the ferry to begin our journey home. We ended up arriving home at about 1:00 AM. Home was short-lived as we were leaving the next evening for WI.
July17th, and 18th
We drove up to Boo and Dzia’s pretty late trying to avoid the traffic. On Friday we were off to Marshall WI (just outside of Madison) to Little A Mericka. Bec, Phil, and John had a great time. If anyone is ever in the Madison WI area go to Little A Mericka. It is an amusement park that is very reasonably priced without crowds. I think the longest we have ever waited in line is about 5 minutes. If anyone is interested just e-mail me and I’ll give you all the info. We drove home late that night, but again home was short-lived.
July 19th and 20th
Somehow I managed to get everything ready for the next adventure, visit with my grandfather who made the trip up to Chicago from TN with his wife Irma and daughter Elizabeth. Yes my grandfather is 80 years old and still going strong despite the prostate cancer that was supposed to kill him five years ago. He is now cancer free without conventional medicine and keeps up better than me with his eight year old daughter and 35 year old wife.
July 21st
Boo and Dzia came to pick up all three kids at around noon. They headed up to WI for the week. Phil and I jumped into the car and drove up to Muskegon MI to the Muskegon County airport. We arrived at Muskegon County just in time for our 5:00 flight to Detroit. We were flagged as potential terrorists- you know the blonde hair and blue eyes gives us away every time-so it took forever getting through security. We were quite surprised when the Northwest attendants approached to carry our luggage on to balance the plane What???? We made it safely to Detroit for our three hour layover. We then caught our 9:00 PM flight to Pellston Regional Airport, just outside of Mackinaw City. We arrived safely at Pellston and caught the shuttle to the Mackinaw City marina. We felt it was fine time to catch a few zzzz’s before our dawn departure on Erliechda destination Muskegon MI.. Erliechda needed some repairs hence the Muskegon destination.
July 22nd and 23rd
We (Phil, Bill, Clay and I) set sail for Muskegon. We had planned to stop in Leeland MI for the night but the harbor was too shallow so we pressed on to Frankfurt. At about dusk the winds kicked up to about 25 knots and the waves were 8-10 feet. I swear the giant squid is what drove me to bed but no one seems to believe me. Anyway after about an hour of fighting to stay in one position I felt it was fine time for me to go to bed. Sorry guys but I’m not strong enough to battle those darn waves and once I have to start tethering myself to stay on deck it’s time to go below. We arrived in Frankfurt MI marina just before dawn and we slept until early afternoon. Of course by early afternoon the lake was glass. We decided to spend the night in Frankfurt and push it out to Muskegon MI the next day.
July 24th and 25th
Somehow we made it to Muskegon just before dusk despite the lack of wind. We did run the diesel but that is very slow-going. We decided to pack up all of gear and head home instead of spending another night on the boat. We got home about 2:00 AM thanks to horrible traffic. We slept late and enjoyed a very nice dinner.
July 26th
Time to pick up the kids... Boo and Dzia were nothing short of exhausted. Thank You Mom and Dad for an experience of a lifetime. We met Boo and Dzia in Rockford for the transfer. We took the kids out for a late lunch and headed home. Somehow I managed to unpack and finish all the laundry. All the kids and I will be leaving again on Friday for TN. The Dunn Family reunion (my maternal grandfather’s side) is on Saturday. We will head home on Sunday.
So I plan on spending a very lazy week a home.
In Medical News....
I received the radiology report before our adventures, but did not have time to send the films to Dr. Maris. I did e-mail Dr. Kushner the report. The films will go out to Sloan and CHOP next week. There has been something in the right suprarenal area for three scans in row now. Back in Feb it was described a two small masses in April they were about the same size. Dr Kushner and Cohn felt at that time it was probably unopacificied bowel loops and an unopacificied section of the pancreatic tail. This go around it is being described as one mass and more prominent than the previous scan. There are also and I quote several prominent and well defined mesenteric lymph nodes that are not yet pathologically enlarged. What is the radiologist trying to say with that one???? In speaking with Dr. Cohn over John’s abdomen I got the impression she isn’t overly concerned but concerned enough to keep the scan schedule at 10 week intervals. As always my questions can NEVER be answered and I realize with this one we will probably just have to wait and see. As always nothing with John is black and white... Anyway we are still overjoyed with the first finding on the Chest CT . Hopefully the nodules will go away and leave me alone also. That’s about it for today...
Jen
Tuesday, July 1, 2003 2:29 AM CDT
Added in July 9 th at 4:30
John's VMA is 20.2 HVA is 58
Why won't these levels just go away and leave me alone????? We did repeat his CO2 and it is still quite low at 15 last week it was 13 and normal is between 23-32. Nothing makes much sense, at least to me. I am still waiting for my copy of the radiology report. Otherwise John seems to be doing great. John will be headed to Boo and Dzia's summer house in WI on Saturday for the week. Phil Sr. leaves for the Mac-a 40 hour sail-on Saturday. Rebecca, Phil Jr. and I are going to tackle the 500 mile drive on Sunday-I must be nuts.
Added In JULY 4 th at 6:30
Just wanted to wish everyone a very happy fourth. We are still waiting for the VMA/HVA and some opinions on what to do about John's labs. I guess his CO2 level came back way low, so I think we need to repeat and hope everything is ok.
Added in July 1 st at 9:30
CT results----Although John is still sporting about 10-15 subpleural peripheral nodules the two right hillar masses have Completely Resolved. I'll update with more details tomorrow but I really wanted to share our first piece of good news in a very long time....
Hmm!! It's 2:30 in the morning and I can't seem to practice my talent. You see Rebecca decided we should have a family talent show. And guess what she thought my talent should be---nothing other than sleeping. This kid slays me. I admit once I fall asleep I can sleep through a cyclone but it's that falling asleep thing that I have had a hard time with for the past 13 months. Nonetheless many sleepless nights are spent doing laundry, washing floors you know the routine..So I asked Bec when she thought I did all this stuff. Of course, I should have anticipated the response....The laundry fairy, the floor fairy. You've got to love it!!!
Well Rebecca and Phil are safe and sound in WI with Boo and Dzia. Phil, John, and I begin our day in just three short hours. Please don't forget to say a prayer for John's scans and his parents sanity. We will update as soon as we know what is going on. Probably late afternoon or early Wednesday.
Jennifer
Friday, June 20, 2003 11:53 PM CDT
I guess I am way overdue for an update! I must say life has been very hectic lately. Phil is out of school and Rebecca has one hour left on Tuesday. I have yet to figure out why Chicago Public Schools make these children go for one hour after a three day weekend, I guess they know something I don't.
Last weekend I sent all three children up to WI with Boo and Dzia (Phil's parents), and yes both Phil and Rebecca played hookey for two days. John had his first swimming experience and was quite terrified and apprehensive of the big pool. He is still uses crawling as his primary mode of transportation but does venture into walking several times a day. Of course he is still coughing but it is much better. We still hear the occasional wheeze but overall I think he is quite stable, with the help of all the wonderful steroids. The craziest thing about John is how well he listens to NO. Maybe Rebecca and Phil were psycho, because they never once listened to that word. When they were little my house was so childproofed Phil and I couldn't get into anything. We have not had to childproof anything (with the exception of the medicine cabinet and cleaning products, just for peace of mind) this go around, knock on wood. John is also the only one of the three who actually enjoys and wants to be held.
Now back to last weekend... Well in the wonderful world of sailing there is a competion known as the NOOD (National Organization of One Design) races. These races are the huge, surpassed only by the MAC in Chicago. Phil Sr. raced all three days and I meet him at the Chicago yacht club after the days races. Friday we enjoyed the company of many fine sailors at the yacht club reception and Saturday and Sunday we opted for the quiet dinner at two of our favorite restaurants. I think we really needed the freedom from all responsibilities. On Monday I headed up to WI to gather the children and give Boo and Dzia some much needed rest.
Obviously we have opted to wait and see what the scans show here on July 1st. At that point we will make decisions on what to do next. So please remeber to keep John in your thoughts and prayers as the days dwindle down to July 1st.
Please stop by Jay's page and offer him support and words of encouragement. In addition, please don not forget Akaida's family, please continue to pray for their strengh and courage as they greive the loss of their only daughter.
Jennifer
Thursday, June 12, 2003 9:13 PM CDT
We would like to extend our deepest condolences to Rick, Marie and Adam as they begin their journey without their Princess. Princess Akaida sprouted her Angel Wings on June 9th. She will forever sing and dance and play in my heart. Angel Akaida touched so very many lives throughout her battle and I am honored to have had the opportunity to know her. Please stop by her page and offer Rick Marie and baby Adam your support and prayers.
Sunday, June 8, 2003 4:18 PM CDT
Despite the cough and intermittent low-grade fevers, John took his first steps the other day. Since then he has become braver and braver and I believe we are up to about 15 steps. Wow!!!
The cough is better but with that came these intermittent low fevers (under 101). Who knows? He seems fine so we will see.
John has spent the last two days at Boo and Dzia's while Rebecca, Phil Jr. and I drove up to Michigan City to greet Phil Sr. and the entire crew of Erlichta (the sailboat Phil crews on) They had a great trip up to Michigan City and are sitting pretty in the standings, but have not quite made it back to Chicago yet. Hopefully within the hour they will be safly docked at Monroe Harbor. The Mac is just a couple of weeks away Go Phil and Erlichta....
Other than being totally confused about what to do with John everything is great and we are having tons of fun in the sun.
I talked to Doc Kushner and he felt we could redo the MIBG anytime now. Well John has a CT scheduled July 1st here and I was thinking maybe we should wait and see how that looks. Maybe I am being totally naive but we have spent a whole lot of time doing nothing what difference does two more weeks make? Maybe just maybe someone up there is listening to me and his lungs will look better. Then again maybe I have totally lost my mind. I guess I have to make some kind of decision real fast.
Well I gotta run but please remember to visit Akaida and Jay. They both really need prayers and words of encouragement.
Jen
Friday, May 23, 2003 0:02 AM CDT
HAPPY BIRTDAY PHILIP!!! I can't believe my second baby is FIVE!!!!
Finally results!!!!!! Although the numbers are not exactly what I was hoping for (I was hoping somehow they magically dropped into the normal range) they are stable. We will see what Doc Kushner thinks next week.
The numbers are:
VMA 16.1
normal less than 7
HVA 52.6
normal less than 24
So about the same as the first of April.
It's 3:00 and the darn results are not in yet. If they aren't in by 5:00 guess I have to wait out the long weekend. Does anyone realize people's lives are predicated on those stupid numbers???????
Somehow we made it down to Children's for the VMA/HVA on Monday and survived. Since Dr. Cohn would not order - the least invasive and most inexpensive- the test we got to use the lab in the basement (mental note avoid the lab in the basemenst at all costs. Three hours for John to pee in a bag - I don't think futher explanation is required. Hopefully we will have the results tomorrow. When I know I will be sure to post them in a very timely fashion.
On the medical front John is still wheezing in the right lung, the cough is unforgiving, and sleepless nights are the rule rather than the exception. Hopefully things will be looking a bit better soon.
Please don't forget to visit Jay and Akaida both are in need of prayers and words of encouragement.
Jennifer
Saturday, May 17, 2003 9:09 PM CDT
Where to begin????????? First and Foremost I want to Thank "Basketball" Sarah. Sarah is Phil's niece, Tom and Angela's daughter. At barely 20 years old she and her team managed to raise over $16,000 for the ACS Relay for Life. As I reflect on the Illumanaria ceremony, watching carefully as Sarah, Rebecca and Philip Jr., lit John's candles, I not only think about how much I hate cancer but also all the hidden blessings cancer has given me. I know an oxymoron but nonetheless true. Hopefully in the near future I will be able to translate in words what I mean but right now the thoughts and feelings are too powerful.
So once again I owe Sarah a huge thank you for a very memorable night.
In medical new I wish I had something positive to say but I realy don't. John is still wheezing coughing and has increased respirations. I think the respirations might be a bit better. He is beyond crabby I don't think 30 minutes went by today that he wasn't whining. The thing behind his ear is growing still and now it is very noticible from a distance. Probably the size of 1 1/2 marbles cut in half. I'm tired exhausted and don't feel like fighting with doctors anymore. Monday I will get the VMA/HVA done by Friday we should have the results. Who knows if the numbers even mean anything anymore. Hopefully someone will look at this thing behind his ear next week or make a decision on how big it needs to get before they actually do something real. Maybe they want it the size of a baseball I'm not really sure anymore. But I am sick what I deem to be pathetic excuses for doing nothing.
Please don't forgot to visit Akaida and Jay. They both could use words of encouragement and prayers.
Of course don't forget John-John (Phil asked me today if I thought I was a Kennedy).
Jennifer
Friday, May 16, 2003 0:07 AM CDT
Wheezing Wheezing and a bit more wheezing. After a long reprive form the wheezing it's back. I'm pretty sure I heard it start on Sunday but by Monday you could hear it from a mile away. And of course the wheezing never comes alone it always brings the increased respirations with it. So if I wasn't a complete nut last week I am now. We added a few more drugs to the cocktail and while he hasn't gotten any better he hasn't gotten any worse. And if the wheezing and respirations in the 50's wasn't enough John decided to cut his molars. I must say this week has been so much fun.
Needless to say we didn't get to run the VMA/HVA this week so hopefully on Monday we will get the go ahead. One of the drugs we had to give John is a contraindiction.
Other than that John is still a quite the charmer. He did figure out how to climb into and out of his walker. Go figure most kids learn how to walk then climb not mine he climbs and as soon as he feels the need he will walk.
That's about all for today Please remember to stop by Akaida's and Jay's site.
Tuesday, May 6, 2003 7:46 PM CDT
Urgent Prayer request for Princess Akaida. Please pray for Akaida. You can visit her site via the hyperlink above.
Wow does a lot change in just a couple of days. After we changed John's milk to Lactose free he chippered up within hours. By the next day he was back to his normal charming self. He figured out how to give kisses--tongue and all. Becky was pretty grossed out when drool got on her face. Oh well she'll get over it. John's still not walking but I'm sure it will come soon??? Tomorrow we go to the pediatrician for counts and height and weight. The following week Doc Rosenbaum (pediatrician) will run the VMA/HVA Doc Kushner wants. Since Dr. Cohn does not want to cooperate with Doc Kushner's requests we will do this stuff through the pediatrician. Thank Heaven for all the time and effort Doc Rosenbaum is willing to give for John. Pending the results of the VMA/HVA we will determine how soon the MIBG needs to be repeated. If the numbers are stable or lower Doc Kushner feels we can wait until mid-June. If the numbers are higher obviously the sooner the better.
Becky officially demoted me to the worst mother she has ever had. All because I won't let her do whatever she wants. I hated to inform her that I was the ONLY mother she has ever had. Phil is doing well also. I can't believe he will be five in less than a month. Wow I must be getting old! That's about it for today.
Jennifer
Thursday, May 1, 2003 1:29 AM CDT
God grant me the Serenity
to accept the things
I cannot change......
Courage to change the things I can
and Wisdom to know the difference
The Difference
I got up early one morning
and rushed right into the day
I had so much to accomplish
that I didn't have time to pray,
Promblems just tumbled about me,
and heavier came each task.
"Why doesn't God help me?"
I wondered.
He answered, "You didn't ask."
I wanted to see joy and beauty,
but the day toied on, gray and bleak;
I wondered why God didn't show me.
He said, "But you didn't seek."
I tried to come into God's presence;
I used all my keys at the lock.
God gently and lovingly chided,
"My child you didn't knock."
I woke up early this morning,
and paused before entering the day;
I had so much to accomplish
I had to take time to pray.
Ok I admit I am probably the most guilty person when it comes to prayer. It's not that I don't pray but I tend to make demands and irrational pleas and bargains. Especially when life isn't going just as I would like it to. Just something else for me to work on the faster the better he's probably sick and tired of listening to me demand.
On the medical front crabby crabby crabby is the only words to describe John. His appetite has dwindled to the bare minimum and his sleep has been quite fitful. Something is definitely bothering him and I'm hoping it is either teeth or the milk we put him on last week. We took him off milk today and switched to a Lactose free milk. If there are no improvements by tomorrow we will switch again to a Soy protein milk. If that doesn't work well then we know it isn't the milk. It has been a full week without Mr. Personality, I miss him and want him back.
Clinic went quite well on Tuesday I showed up very very late (Dr. Cohn only sees patients in clinic on Tuesday between 8:00 and 11:30). John and I waltzed in at 11:45 and there only one child in front of us. Wow I guess it only took me a year to figure out how NOT to play the hurry up and wait game. The four twiddles had met on Monday and quite frankly I don't know why they include the pulmnologist anymore because they just pooh-pooh everything he says. Anyway they basically agree with Dr. Kushner on the CT with some few minor discrepencies. Dr. Cohn and collegues feel the right hillar mass is either stable or a bit smaller while Dr. Kushner feels it is just stable. Both sets of docs agree there a couple (3 or 4) of peripheral nodules that have more than doubled in size. He does still have quite a bit of healthy lung tissue. I mention that because in the areas surrounding the nodules the lung tissue has become hyperlucent redering it useless in the air exchange process.
Well it is the middle of the night and sleep is a must what little I get anymore so I'm off to cuddle with my John.
Jennifer
Saturday, April 26, 2003 10:02 AM CDT
If anyone doesn't understand why I am completely losing my mind and cannot sleep read on... I have come to a conclusion there is a conspiracy to drive me to psychosis.
HE SAID, SHE SAID? I have hesitated updating with Dr. Cohn's interpretations until I heard back from Dr. Kushner just to make sure that I understood him correctly.
Dr. Cohn went over the MIBG films with Richard Shore who is the head of Nuc Med. at Children's Memorial. They feel the right hillar and right peripheral lung lit up because of residual isotope from the heart (the heart is one of the organs that just naturally lights up.)
Obviously Dr. Kushner and colleuges completely disagree with her and their only explanation was that it is very difficult to read MIBG films??????
The four twiddles will meet on Monday regarding the CT so i will update at that point what her opinion is on that one..
Anyway John is doing good a bit crabby as of late but I think he is getting very frustrated with not being able to walk yet. For whatever reason he stands on his tiptoes with the right leg but not with the left. If he would only listen to me and put that foot flat.
Jennifer
Friday, April 25, 2003 8:09 PM CDT
Now on to why we are jumping into surgery or treatment. First off surgery appears not to be an option. Dr. LaQualgia feels the morbidity rate of the sugery is way to high. He would have to remove about 90% of John's lung and just doesn't think it is something that should be done. Dr. Kushner and Cheung both agree that NO test is 100% so we will monitor the abnormalities via MIBG and CT. And undoubtedly if this is indeed NB it will go elsewhere possibly somewhere that can be biopsied. Dr. Kushner and LaQualgia feel comfortable waiting 4-6 weeks and assured us nothing would get out of control. I can only hope and pray this crap just disappears.
Wednesday, April 23, 2003 9:28 PM CDT
Still no comparisons.... Dr. Cohn has not yet received the films?
Here's a summary of what we do know
Urinary Tumor Markers
VMA is elevated but not as elevated as he was at DX
HVA is barely normal at DX he was elevated by .9
Serrum Ferritin is normal
LDH is elevated
Children's Memorial does not run LDH and serrum ferritin so who knows what John's were at DX, after two cycles of chemo these numbers were normal.
Now for the CT John has numerous nodules (according to Sloan) or numerous nodules and a mass (according to Childrens) For whatever reason Sloan calls everything in the lung a nodule and Children's call the nodules that exceed 1.5 cm a mass. Whatever from now on I am referring to everything as a nodule. Whatever these nodules are they have exactly mimicked NB in both their location and the intense uptake on MIBG. Real reassuring to say the least. John also has a 1.5 cm mass at the site of his primary tumor this was not there on the last scan but it is NOT lighting up on MIBG so it is possible that we a seeing a "very delayed post-surgical change". John also has two masses in the right suprarenal area that have remained unchanged since last scan and DID NOT LIGHT UP ON MIBG. John also has a lesion on his humerous I think left that did not light up on MIBG. John has this thing growing behind his left ear. This one was a bit tricky because of its proximity to his salivary glands but it appears the left side salivary gland had more prominent uptake than the right and the uptake seemed to rise higher into the skull. John's orbits showed mild increased uptake over previous MIBG that can just be nothing but with everything else going on it freaks me out.
Sorry for my cynical attitude as of late but this is really taking a toll on me. I'll try to get into the reason the docs do not want to jump into treating or operating hopefully tomorrow.
Wednesday, April 23, 2003 0:11 AM CDT
We still don't know much more because when Cohn and Kushner chatted there was no talk of the size of the masses or nodules. Personally I would have thought this would be the first thing on their question list but then again I am not a doctor so I have common sense. As you can see I am getting very frustrated. Three weeks ago we were told if he had uptake on MIBG we would know he had recurrent disease. The child had intense abnormal uptake in areas we can see masses and nodules on CT. Now they can't make up their minds on what to do. What happened to the conversations three weeks ago and why the hell would you say smething like that if you didn't mean it. I am beginning to think there is a conspiracy to drive me absolutely nuts. The first words out of Dr. Cohn's mouth were "How are you coping" if I would have been honest I would be doing this update from a jail cell.
Well supposedly the films have been Fed-exed to Dr. Cohn and then the four twiddles here can "put their heads together" and pretend like they are doing something and we can be in limbo for another month or two.
Friday, April 18, 2003 5:35 PM CDT
April 21 2003
Happy Birthday John!
Sorry for the lack of an update but we are now waiting For Dr. Kushner and Dr. Cohn to chat. We should know something by later today or tomorrow at the latest. I don't really think this conservation is going to change anything but who knows. Maybe for once we can forgo egos and get something accomplished.
I will update in detail tomorrow when we get home. But basically the only thing we have learned is John had intense MIBG uptake in the right lung and left lower abdomen. They could not see a mass in the left lower abdomen on Ct so we are hoping that was just bowel lighting up. Kushner wants to repeat the MIBG and CT in a month. THIS SUCKS!!!!!!!!
Tuesday, April 15, 2003 11:16 PM CDT
Well I was almost on target when I said we would see Dr. Kushner at 4:00 it was 3:35. Anyway he didn't want to speculate on anything until Friday afternoon. So I will meet with him again later in the day on Friday and we will discuss what is going on.
John got his MIBG injection and has been hitting himself in the head ever since. I know the isotope can give the child an upset stomach but has anyone ever heard of a headache from the isotope? Hmm!! I finally gave John some Tyelenol and he just feel asleep so Hopefully it did the job.
Other than that John is being his typical charming self. He hung out with Richie for awile and ate chocolate (Rich's idea, with my protests) Then Rich wanted me to clean up the mess. HA! I just can't believe this child he will just go with anyone!!
He also figured out how to widdle his way out of the strollers seatbelt. Lovely!! So here's idiot me trying to push a stroller grasping Johns arm with John standing in it facing me on the wonderful NY busy sidewalks.
Please remember John in your thoughts and prayers and please pray for the wisdom of the doctors.
Monday, April 14, 2003 7:09 PM CDT
I got the laptop to work!!!! I am sitting here in our room at the RMDH and John is beyond obsessed with the bathroom door so I figured I would let everyone Know we had a very uneventful flight and we are safe and sound. John slept the whole way Thanks to Benadryl. Well I need to run to the store and get some water and treats for John.
We see Dr. Kushner at 11:00 tomorrow so by the time we actually see him it will be 4:00 and John has the MIBG injection at 2:00.
Please remember mister charming in your thoughts and prayers
Jennifer
Saturday, April 12, 2003 0:26 AM CDT
Jonh is home after three greuling days of being spoiled rotten. Boo and Dzia claim he was already spoiled when he got there but I say let's blame the grandparents!!! Anyway he is doing real good. Since it's the midlle of night and I can't sleep he's all cuddled up to daddy.
Rebecca and Phil moaned and groaned the whole time he gone because they wanted to play with him. So he comes home and they are moaning and groaning that he wrecks everything. I can't win.
The kids are on spring break and since the Jupiter paper was due yesterday we have yet another project to do. And this one is an art project. Since I have yet to master the stick figure it should be interesting. We have to make a robot and it the only requirement is that aluminum foil needs to be used. Feel free to share any ideas. She has already told me my idea would get her a F. What can I say I'm trying.
Phillsers is doing good. The city is putting in new sewers for the third year in a row. Let's hope they get it right this time. So he has been very busy tormenting the construction guys!! When he isn't tormenting the construction guys he has been been "helping" Phil get the boat ready for sailing season.
Speaking of sailing season John's very first lifejacket came the other day. This should be interesting!! We didn't take the other two out until they were older but Phil is determined to get John on the boat if only while it is docked. I'm real apprehensive about leaving the harbor with John but as long as we are docked I think he might enjoy it, if only for the change of scenary.
Please take the time to visit Akaida and Jay and say a prayer for them. And don't forget Mister Charming please pray that he is healed of whatever is going on inside his body.
Jennifer
Wednesday, April 9, 2003 0:46 AM CDT
Ok folks I'm finially all calmed down. It seems to take longer and longer every time we get hit with these blows. John is still doing good so we are laying all of our hope and prayers in his incredible disposition and healthy looking appearance. Anyway Phil's parents are back from Flordia as of Sunday night and guess who is over there for a sleepover. Yes they came home to our 5 inches of snow because they had Kwasinski children withdraw. So John is going to hang with Boo and Dzia for a couple of days and get SPOILED ROTTEN. Rebecca and Phil will get their turn next week.
Enough about that Rebecca who is in first grade has had this darn research paper to do about Jupiter. Yes first grade and this paper has to be two pages with a model and she has to do an oral presentation. SOOOOO I am beginning to think these schools are trying to re-educate the parent. This poor child has just learned to read and now has memorize words like atmosphere and Callisto where are we going with this stuff......Anyway she has done remarkably well with this paper and I know everything there is to know about Jupiter. Michael is back in Rebecca's life For those that don't know Michael is our neighboor who is a year older than Bec. Late last summer they were going to get married and one day Bec informed me that they kissed. When Michael found out she told me he was so scared he wouldn't even look at me for months let alone play with Bec and Phil. Well I guess he isn't so scared anymore because he came knocking the other day and wanted to play with Bec. Now this kid is probably bigger than me(heres me barely five feet and 85 pounds dripping wet) heck Bec is almost as big as me so I really can't figure out why he was so terrified.
I took the Phillsers to his kindergarten tea the other day yep come Sept. 8:50 -2:30 freedom rings!!!! and of course I am chatting my head off with some other parents when the principal taps me on the shoulder and says "Ms. Kwasinski Philip has climbed the fire escape, and I really thought you should be aware" So here are all these nice innocent little boys playing on the playground and there's my kid on the second story of the school. Go figure!! Phil's IEP is coming up and I am very anxious to see how he does. I sure hope the past three years of therapy and early childhood special ed have paid off. His teacher seems to feel he will do fine with all of his current provisions and an aide so we will see. It is going to be such a dramatic change I don't want him to get overwhelmed and discouraged.
Please stop by Akaida and Jay's page (click the hyperlink at the top of this page) they both really need prayers and words of encouragement. And don't forget mister charming please pray that his docs will be inspired with wisdom and for complete healing of whatever is going on inside his little body.
In Love and Prayer,
Jennifer
Monday, April 7, 2003 8:07 PM CDT
I Want To Scream Again!!!!!
I am so sick of all these damn tests and all of the damn abnormalties. On the first we decided to check John's VMA/HVA probably a big mistake. For this new lab Children's uses the normal range for under 12 months is radically different than for 12 months and over. Here are the ranges
Under 12 months
VMA less than 14
12 months and over less than 7
John's Vma 16.7
under 12 months
HVA less than 57
12 months and over
HVA less than 24
John's HVA 54
So not only have they decided to use a new lab but he was 20 days shy of 12 months. At least we all agree these are not the results we were hoping for but the words "I'm not quite sure" have come to haunt us again.
Just one more thing on the plate, but VMA/HVA levels can be indictive of other things besides NB including adrenal function. HMM I have asked for that stupid bloodtest 30 times and it was never necessary maybe now it is.
Maybe just maybe parents aren't as stupid as they look and just because they don't have MD behind their name they just might know a little bit about their child.
Dr. Cohn has also scheduled John for a CT of the chest abdoman and pelvis on the 29th of April, because she wants no part of Sloan's tests. The only thing that comes to mind is CAN'T we all just get along and do what is best for JOHN. There is NOTHING standard about cancer and two heads are undoubtly better than one. Hmm, isn't that why all the Oncology depts. have TUMOR BOARDS. Hell Children's has a tumor board but JOHN HAS NEVER ONCE BEEN PRESENTED TO TUMOR BOARD AT CHILDREN'S. HELLO maybe we have an EGO PROBLEM!!!!! Even Kushner has presented John to tumor board at Sloan on numerous occasions.
Ok enough beating up on Dr. Cohn (I do think she thinks she is giving him the best care in her mind) all I demand is the best possible care for my son and I surely think it takes more than one head when it comes to cancer(I only mention cancer because that is what I know and have to deal with) and it's unpredictable behavior.
Thursday, April 3, 2003 8:34 PM CST
The four twiddle's finally decided that the Chest X-ray is not significantely worse so they want to do a CT in a month. All his blood work came back within normal range except for his platlets which were 100 so not to shabby. John must have the weirdest platlet production because four weeks ago they 698 which is really high. We did all this blood work hoping something would come back abnormal that would explain whatever was going on inside of him. But to no avail...
Finally the story everyone has been holding their breath for. First let me explain Dr. Cohn's credintials she is truly a worldwide expert on NB, highly regarded by the docs at Sloan, and the chair of the COG (Children's Oncology Group) steering committee for Neuroblastoma. Ok so here goes. Dr. Cohn is totally against us going back to Sloan. Here are the reasons
1. "We have already let them do a morbidly aggressive surgery and they consistently do morbidly aggressive surgeries and treatment."
2. "A negative on their tests will not rule out cancer in her eyes." She was referring to the MIBG but when probed if a positive would mean he has disease she said "Well of course"
3. "A positive on the PET does not mean for sure it is cancer because SHE feels other things can light up."
So there you have it..Well needless to say John and I will be heading to NY on the 14th for the morbidly aggressive testing. If all that comes out of it is peace of mind for Phil and I that we have done everything in our power for John then we will consider the trip a success. All Twiddle dee (onc-doc), twiddle dum (surgeon) twiddle dumber (pulmonologist) and twiddle dumbest (radiologist) here can tell us is I don't know.
Jennifer
Wednesday, April 2, 2003 6:51 PM CST
We really don't know anything new today except that John's lung might be a little worse or the same. Since he didnt' have a CXR back in February they have nothing to compare this one to. So I guess they are playing a guessing game. I had posed this question yesterday and never got a real answer. She just told me let's see what it shows. It's always nice being dismissed. Anyway twiddle dee (onc-doc) and twiddle dum (surgeon) want twiddle dumber (the pulmonologist)to look at the CXR. I'm sick of jumping through hoops for these doctors when they won't even crawl through a hoop for me. As for ear growth she wants to examine it again in two weeks. Yep too bad We'll be NYat Sloan. I'm exhausted probably because I haven't slept in two days so still to come Dr. Cohn's explanation for our flabbergasting conversation.
Jennifer
Friday, March 28, 2003 8:18 PM CST
April 1st
I WANT TO SCREAM !!!! We ended up doing an ultrasound of the thing growing behind his ear and a chest x-ray, for what purpose I'm not quite sure. Of course we don't really get to know anything until Dr. Cohn talks with Dr. Reynolds (the surgeon). Dr. Cohn is concerned with ear growth thing because it is an enlarged lymph node and it has also attached itself to his skull. Sounds just lovely. Anyway I got the impression she wants to watch it for a couple of weeks. I'll update more tomorrow hopefully after twiddle dee and twiddle dum talk about todays tests. Everyone is just going to love the explanation about our flabbergasting conservation yesterday.
Added March 31
The best laid plans of mice and men....
Dr Cohn got back to me this morning after speaking with Dr. Rosenbaum. She would like to see John in clinic tomorrow for a head CT. This damn thing behind his ear is driving me nuts so I guess it is for the best.
Now everyone can get a glimpse into my world with Dr. Cohn. I also asked her for the SSKI drops (iodine to protect John's thyroid from the radioactive isotope injected for the MIBG scan) And the answer was- If you go to NY Dr. Kushner should oversee John's care and the head CT can certainly wait until then. Needless to say the head CT will be done at Children's tomorrow. We will see what happens with SSKI drops, its become an even more personal issue now.
NEW PICTURE ADDED MARCH 29 th
ISN'T HE TOO CUTE!!!!!!!!!
I have been so out of the loop lately. John is doing good still hacking away I think we are running an all time record for a cough maybe the lung nodules have something to do with it. But then again maybe I'm crazy. I think John has been on every steroid known to humankind and I currently think he is on enough inhaled steroids for an elephant but these docs keep telling me they are moderate doses.
In other medical news I took John to the pediatrician yesterday for this thing we have been watching grow behind his left ear for the past couple of weeks. I had initially thought it was a reactive node or the like, but it just kept getting bigger. Doc Rosenbaum agreed that it was probably too big to be a reactive node and wants us to see Doc Cohn the onc doc. So we will see what she has to say when she gets back to us. If I hear one more I don't know I will most likely end up in jail.
In other news John gets more charming every day. He is just amazing. He now has eight teeth and wakes Phil up in the morning by biting his toes. He is cruising the furniture and tries to stand by himself.
On another note we would like to send our deepest sympathies to the Hendry family. Matthew became an angel earlier this week, but Matthew will forever live in our hearts. Please pray for Nadia, Keith, and brother Michael to somehow find peace and hope.
Jennifer
Wednesday, March 19, 2003 9:02 PM CST
May God Bless the USA, the men and women of the armed forces, their families and loved ones, and the civilians of Iraq. I won't get political but I was really hoping the leaders of Iraq would be inspired with a shred of sanity and just leave.
Jennifer
Monday, March 3, 2003 8:28 PM CST
March 5th 2003
HAPPY BIRTHDAY PHIL! One more year and he'll be forty. I on the other hand will be celebrating 21 again in August.
Family and Friends,
I have calmed down since my last entry. Dr. LaQualgia and Dr. Kushner feel we should wait six weeks and rescan. They are both adament about running their own scans this time around so John and I will go to Sloan the 14-18 of April. Both were quite concerned with the suprarenal masses found but also relieved at how early they were caught. The smaller mass is not quite a cm yet I think it is 0.6 x 0.9 cm and the larger mass is just over a cm measuring 1.3 x 1.1 cm. The nine new lung nodules has also baffled them. So we will see if they have uptake on MIBG or PET.
On the 22nd of April John will have a CT of the chest abdomen and pelvis here with Dr. Cohn. At this point we should have a clue what the future holds.
Gotta Run John is calling,
Jennifer
Tuesday, February 25, 2003 9:10 PM CST
Family and Friends,
I AM SO PISSED OFF!!!! We found out today John has two masses in the right suprarenal region (he originally presented in the left suprarenal region). Supposedly we were told about these masses last week but come on do we both have moron written across our foreheads. Does anyone actually think Phil and I both just forgot about that part of the conversation. Anyway this doesn't change Dr. Cohn and Dr. Reynolds minds they still want to rescan in eight weeks. Dr. Green the pulmonologist has looked at the films and believes this is oncology's problem which I totally understand.
Anyway we have major decisions to make YESTERDAY. We are seriously considering going back to Sloan. There is just too much unexplained going on in John's little body. John has been struggling in the breathing dept. with quite a bit of wheezing but hopefully this will be short-lived.
Please pray that Phil and I make the right decision for John.
God Bless,
Jennifer
Thursday, February 20, 2003 0:35 AM CST
Family and Friends,
Another CT, more abnormalities. The tumor in the middle lobe of John's lung appears to be stable, possibly smaller which we are regarding as good news. However several new abnormalities were found. Possibly patches of nodules on the peripheral of the right lung or enlarged lymph nodes in that area. I am going to have to clarify the exact location of the new abnormalities with the Dr. Cohn (oncologist) and Dr. Green (pulmonologist) tomorrow. Dr. Cohn is hoping these abnormalities are a result of trauma but she just doen't know what is going on and why. I am going to speak with Dr. Green hopefully by the end of the week but I think we are leaning towards a second opinion. Dr. Cohn would like to wait eight weeks and do another CT. I am a bit uncomfortable with this approach and would feel so much more at ease if a different team of docs agreed with the approach.
I'll post a better update later this week after spending the evening at Lutheran General getting stiches on Rebecca's lip I am exhausted.
God Bless,
Jennifer
Tueday, February 4, 2003 9:12 PM CST
Family and Friends,
Well other than the stomach flu from hell and a virus that created like 40 mouth sores John has been doing pretty good. Actually we all fell prey to the stomach flu-the two Phils had it for maybe an hour and Rebecca and I got hit for about eight hours- but John, seven full days.
Other than that we took John to another pulmnologist down at Children's. Dr. Cohn recommeded him and he was great. Dr. Greene took over an hour going over films with me. Quite frankly he is quite worried. In addition, to the tumor most of the broncholi in both the upper lobe and middle lobe-the area around the tumor- is completely destroyed. The broncholi exchange the gases- Oxygen and CO2-for the body. He feels we need to get a look at the tumor now rather than wait until the 18th. So he is going to talk with both Dr. Cohn and Dr. Reynolds to get their input. The good news is John's left lung appears to be perfect and John can live with only one lung functioning. We are hoping to hear back from either Dr. Greene or Dr. Cohn by tomorrow evening.
Please say a prayer all John's docs are inspired by God with the answers they need.
Also I want to ask everyone to remember Akaida in their prayers. You can visit Akaida at www.akaida.org.
God Bless,
Jennifer
Wednesday, January 15, 2003 at 06:12 PM (CST)
Family and Friends,
Sorry for the delay in the update, but JOHN IS HOME!!!
He is doing very good pulling himself around the house and smiling. I think that smile is the only that is keeping me the least bit sane anymore.
After talking to every doctor involved at length Dr. Cohn-oncology, Dr. Reynolds-surgery, and Dr. Aljadeff-pulmnology, I think they have all come to the conclusion this upper tumor is the great unknown. Dr. Aljadeff is sorting through "stuff" and really can not find anything to support oncology's previous assumption-but he adds never say never. Dr. Cohn wants to be the one to follow this tumor on CT at a 4-6 week interval for now. Actually the next CT is Feb. 18th but as per today's conversation she will move it up if John's breathing gets real troublesome. Dr. Aljadeff feels John is on all the frontline breathing meds which reduce inflammation so something else must be going on. What that something else is He's not sure. He is wondering if the "pseudotumor" on the peripheral might be a reaction to the other larger tumor.
I guess the "great unknown" really bothers me especially in this day and age. Come on it is 2003 and no one can tell me what is wrong with my son. And these are the best doctors. Baffling just baffling!
God Bless,
Jennifer
Saturday, January 11, 2003 at 01:13 PM (CST)
Family and Friends,
GOD TRULY WORKS MIRACALES! The bottom tumor is a psuedotumor. Benign in nature but acts like malignancy. The doctors at Children's Memorial have only seen this type of tumor in the lung once in 25 years. The top tumor was way to deep in the middle lobe of the lung to even get a biopsy the surgeon would have had to take John's whole lung. The current plan with that tumor is to wait for final pathologies on the bottom tumor and assume it is the same thing. Hopefully we can then come up with a treatment plan, so he can finally breathe easier. We will also watch it very closely. Dr. Cohn has suggested monthly CT for the next six months. We feel very comfortable with this plan and will precede to have faith that the top tumor is a psuedotumor also. I can not begin to say how very grateful we are for everyone prayers. John is truly a miracle.
John is doing great and resting comfortably. We are hoping to get the chest tube out tomorrow. He is such a trooper. He is already smiling so we know his spirit is alive and well!
We will give a more thourough update on the miracle that has taken place as soon as we break out of the "expensive hotel"
God Bless,
Jennifer and Phil
Thursday, January 09, 2003 at 08:44 AM (CST)
Family and Friends,
Mini Update:
Surgery is scheduled for 9:45 AM not 7:30.
Wow! We are so very grateful for all the prayers on John's behalf. We would also like to thank everyone for the words of encouragement we definately needed it. We have begun the move from fear to faith and we know God will be looking down and protecting John.
We are hoping Dr. Reynolds will be able to get both tumors via thorascopy (a small incision on the side). We have been forwarned the tumor next to John's heart will probably not be able to be reached with this method. If this is the case Dr. Reynolds will open John's chest to resect the tumor.
Both Phil and Rebecca know John will be going back into the hospital for a surgery to remove the bad guys. They are handleing everything like true champs. I think they are looking forward to be spoiled once again with Phil's parents. They do so enjoy being with Boo and Dzia which really takes a huge burden off our shoulders. Not only do we know they are receiving the best care but also they extremely happy.
John is still living his life to the fullest. He started to pull himself up the stairs. This is quite the awesome sight and he is so proud of himself once he gets to the top. (Don't be too concerned it's only three stairs and we are hoovering over him) He has also cut some more teeth but you would never know it from his disposition. His smile is still a treasure.
We will be heading down to Children's this morning for the normal pre-op testing. Tomorrow he will be admitted and we expect surgery to begin around 7:30 AM. We or someone in the family will update as soon as he is recovering at which point I assume we should have frozen section results.
Please keep John and the entire medical team in your thoughts and prayers.
God Bless,
The Kwasinski's
Jennifer, Philip, Rebecca, Philip, and John
Tuesday, January 07, 2003 at 03:49 PM (CST)
Family and Friends,
John has two tumors one small one on the bottom of his lung. The second one is quite large right next to his heart possibly in the lung possibly a lymph node. Biopsy and Resection are scheduled for Friday morning. Please keep John and all his doctors and nurses in your prayers. I really can not to bear to say anything more right now.
God Bless,
Jennifer
Thursday, January 02, 2003 at 08:23 PM (CST)
Family and Friends,
Happy New Year To Everyone!! I hope 2003 will bring the cure for cancer we so desperately need!!!
I took John to the ortho. surgeon on Monday. Dr. Knuth wants John to see a neurologist/neurosurgeon for the right leg. He also wants us to mention the leg to the onc-doc. He did not see anything obvious on X-ray but he also said CT is a much better method to pick up bone lesions. X-ray only works about 20% of the time. So I asked Dr. Knuth to take a peek at the X-ray films from John's arm. He immediately said Oh that's nothing and I will prove it to you right now! Dr. Knuth added that because it was nothing it would be gone. Boy did I feel hopeful. We did repeat X-ray films right there in his office. Dr. Knuth came back a couple of minutes later to inform us not only was that damn lesion still there but it is growing. We studyed the films and it appears to be moving deeper into the bone but not really growing length wise. Of course he has no clue what it is and wants us to let the onc-docs do repeat films next week to see what they say.
We have a couple of days left before we go in for the scans that will determine the next three months of our lives.
The Scan
A Sleepless Night
Tomorrow our lives could change again
Forever...Forever
Will the scan be clear, will the tumor return,
now... or never?.....
We try to smooth the ups, the downs,
Its been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
forever...forever
Tomorrow we'll sit while the bangs and clicks,
surround us.......engulf us
staring down the tunnel, waiting for the films,
that free us..... or damn us,
The probabtion could last for another four months
Or find us retreating behind false fronts,
That we take out tomorrow to hide the anguish,
around us..... within us,
Tomorrow our lives could continue on course,
or falter.... get altered
It's amazing to think that one simple test has,
Such power.....such impact,
To the world around us the test date comes,
one after another......eventually numb.
To the fact that tomorrow could leave us again
bewildered.......off kilter,
Tomorrow we hope that the treatments have helped,
change things....delay things,
Are there further treatments that we can survive,
do we want them?.....can we stand them?
Has the cancer been killed: Or does it lie there in wait?
Will it show up tomorrow? Or some much later date?
Tomorrow a crossroads, or merely a rest stop,
on a journey.....to eternity
Tomorrow our lives could change again
forever...forever
Tomorrow our world could be turned upside down
tossed asunder....it's no wonder
That we dwell in thwe past, trying to recall the way
That we made it through "tomorrow"
when it was yesterday
And why we hope to face tomorrow again and again
forever.......forever
Steve Foss
Please keep Akaida, Matthew H., Jay B., Daniel, Robyn, Grace, Brandon, and all the children who are fighting or have fought cancer in your prayers! Virginia B Jay's mom said it best they march on day after day with hardly a complaint.
God Bless,
Jennifer
Thursday, January 02, 2003 at 08:23 PM (CST)
Family and Friends,
Happy New Year To Everyone!! I hope 2003 will bring the cure for cancer we so desperately need!!!
I took John to the ortho. surgeon on Monday. Dr. Knuth wants John to see a neurologist/neurosurgeon for the right leg. He also wants us to mention the leg to the onc-doc. He did not see anything obvious on X-ray but he also said CT is a much better method to pick up bone lesions. X-ray only works about 20% of the time. So I asked Dr. Knuth to take a peek at the X-ray films from John's arm. He immediately said Oh that's nothing and I will prove it to you right now! Dr. Knuth added that because it was nothing it would be gone. Boy did I feel hopeful. We did repeat X-ray films right there in his office. Dr. Knuth came back a couple of minutes later to inform us not only was that damn lesion still there but it is growing. We studyed the films and it appears to be moving deeper into the bone but not really growing length wise. Of course he has no clue what it is and wants us to let the onc-docs do repeat films next week to see what they say.
We have a couple of days left before we go in for the scans that will determine the next three months of our lives.
The Scan
A Sleepless Night
Tomorrow our lives could change again
Forever...Forever
Will the scan be clear, will the tumor return,
now... or never?.....
We try to smooth the ups, the downs,
Its been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
forever...forever
Tomorrow we'll sit while the bangs and clicks,
surround us.......engulf us
staring down the tunnel, waiting for the films,
that free us..... or damn us,
The probabtion could last for another four months
Or find us retreating behind false fronts,
That we take out tomorrow to hide the anguish,
around us..... within us,
Tomorrow our lives could continue on course,
or falter.... get altered
It's amazing to think that one simple test has,
Such power.....such impact,
To the world around us the test date comes,
one after another......eventually numb.
To the fact that tomorrow could leave us again
bewildered.......off kilter,
Tomorrow we hope that the treatments have helped,
change things....delay things,
Are there further treatments that we can survive,
do we want them?.....can we stand them?
Has the cancer been killed: Or does it lie there in wait?
Will it show up tomorrow? Or some much later date?
Tomorrow a crossroads, or merely a rest stop,
on a journey.....to eternity
Tomorrow our lives could change again
forever...forever
Tomorrow our world could be turned upside down
tossed asunder....it's no wonder
That we dwell in thwe past, trying to recall the way
That we made it through "tomorrow"
when it was yesterday
And why we hope to face tomorrow again and again
forever.......forever
Steve Foss
Please keep Akaida, Matthew H., Jay B., Daniel, Robyn, Grace, Brandon, and all the children who are fighting or have fought cancer in your prayers! Virginia B Jay's mom said it best they march on day after day with hardly a complaint.
God Bless,
Jennifer
Sunday, December 29, 2002 at 11:32 PM (CST)
Family and Friends,
We hope everyone had a wonderful Christmas. The kids are finally done opening all 20,000 presents they received. We truly had a remarkable Christmas. John was enamored with the Santa Clause at the mall, however, when Santa awoke at Phil's parents house on Christmas Eve he was quite terrified. So if anyone wants to visit Toys r Kwasinski's feel free to pop by our Greenleaf Ave address.
As Phil likes to say John's lungs crapped out again. We were fortunate to catch it early on bypassing the need for inpatient care. Both Phil and I didn't sleep those first couple of days I think we became obsessive with listening to him breathe. Other than that John has started to lose weight and is not using his right leg. We will be taking him to an orthopedic surgeon tomorrow and hopefully to the neurologist next week. The hem/oncs still want to wait until the seventh for scans.
John manages to pull himself all over the house with his arms and left leg so he is officially mobile. And the curosity is quite fierce. He loves attention and I'm pretty sure someone is at least making eye contact his every waking moment.
All else is well only one more week and the kids go back to school. Hip, Hip, Hooray!!!
I also want to request prayers for Akaida. Akaisa has been battling Neuroblastoma for way to long it is time for this ugly disease to exit her body and let her live her life. Her parents Rick and Marie are very special people to us and have helped us out a great deal. You can visit Akaida and her journey at www.Akaida.org. Her parents have given permission to add Akaida to prayer lists so please keep her in your thoughts and prayers and pray for the doctors find a way to cure Akaida.
God Bless,
Jennifer
Wednesday, December 11, 2002 at 08:42 AM (CST)
Family and Friends,
The ever awaited phone call came last yesterday afternoon and I will preface this with we still don't know. John's VMA was 24 and his HVA was 40. At any other point we would be quite alarmed with these results but Dr. Cohn is attributing the results to one of the asthma meds John was on in the hospital. Yes, the one she swore to me would not affect the results. Since I have taken the time to do my own research I know epinephrine is a contraindiction, what is not clear is how long a child needs to be off the med before taking the test. John was off epinephrine for about 10 days before the VMA/HVA collection so it seems he was off the drug long enough but then again maybe he wasn't. In addition I would think by this point John would be in some kind of pain if this were NB and he really doesn't seem to be in any pain. So for now the game plan remains the same. Jan 7 they will redo the plain films and bone scan and possibly perhaps magically come up with a diagnosis. At this point we will also be doing a CT of the chest abdomen and pelvis which will hopefully reveal what the "jargon" is in John's abdomen and if those lymph nodes in his chest have resolved themselves.
I would also like to ask everyone to add the Rierson family to their prayer rolls. Trinty gained her angel wings this weekend after fighting Neuroblastoma from birth. She had just turned 18 months. Please keep Tracey, Sean and big brother Seth in your prayers.
God Bless,
Jennifer
Saturday, December 07, 2002 at 12:30 PM (CST)
Family and Friends,
CHECK OUT THE PHOTO ALBUM! The smile I treasure has been
added for everyone else to treasure.
After of hour of begging and pleading with the computer to upload the picture I decided to cry well the computer felt it wasn't necessary for a grown woman to cry to a coumpter and uploaded the picture. I will try to get a picture of Rebecca and Phil uploaded hopefully the computer will not make me cry again.
God Bless,
Jennifer
Tuesday, December 03, 2002 at 08:35 PM (CST)
Family and Friends,
Just a quick update, John and I went to clinic on Monday to submit his urine for a VMA/HVA level. We should have the results by the beginning of next week. I will update as soon a we hear from Children's.
God Bless,
Jennifer
Thursday, November 28, 2002 at 09:48 AM (CST)
Family And Friends,
Happy Thanksgiving!!! This year Thanksgiving has taken on a new meaning for us. We have become thankful for all the little moments. Those moments one would have taken for granted just a year ago. Those little smiles or amusing stories are cheerished and reflected on. We are thankful we have today.
Things had gotton a bit hectic trying to figure out why John's bone scan lit up and we really still do not have any answers. Both Dr. Cohn and Dr. Kushner agree this time around phew. We have been told the statistics say this is not Neuroblastoma but the films definatley do not rule it out. Since a bone scan is not specific to diagnosis we have no clue. A positive bone scan just means there is rapidly dividing cells where there is uptake. We will be running a VMA/HVA next week to try to slim the stats of this being Neuroblastoma. The closer we can get to 100% the better. Since only about 20% of infants develop bone disease right now we stand at about 80% ruled out. If John has a stable VMA/HVA we can narrow those numbers to about 95%. Much better in my eyes. We should have those results the following week. Neverhteless both doctors also agree we will need to follow his bones very closely for the time being with X-ray CT and bone scan.
On the lung front John is doing much better. I think we have things under control. He is still wheezing a bit but not in any distress. Unfortunatly John has not been able to leave the house since released from the hospital (other than doctors appt). John's lungs just are not strong enough for Chicago weather. Phil's parents have had to pick both Becky and Phil up from school for two weeks now and we truly appreciate all their efforts. This entails two different schools at two different times. They have taken on a lot of burden to aide us in John's contining care.
John is still quite the charmer despite everything he continues to prosper. We have truly been blest with a very special soul.
I would also like to send a very special Thank You to the Melanie, Nadia, Marie and Karen for the thoughtful and strengthening correspondence while John was so sick.
God Bless,
Jennifer
Tuesday, November 19, 2002 at 07:48 PM (CST)
Family and Friends,
John is HOME!!!! I would like to thank everyone for their words of encouragement, thoughts and prayers. My John is truly an amazing child. In as much distress as he was in he always had a smile reserved for everyone including the doctors and nurses. Just writing of his remarkable personality brings tears of joy to my eyes. I am so proud of my little soldier.
Last week I had written that the docs had found a "lesion" on Jonh's arm. I am very sorry to report the "lesion" has been confirmed on bone scan. I have been in contact with Dr. Cohn, Dr. Kushner, and Dr. LaQualgia. A bone scan does not tell us what this "lesion" is per say and most likely more testing will need to be done. Dr. Kushner actually called me tonight after receiving my e-mail earlier today (for those that don't know Doc Kushner, he only communciates via e-mail). Doc Kushner contacted the hem-oncs at Lutheran General and he wants the films on his desk no later than Thursday morning. He is taking this very seriously and seemed quite concerned.
We will also see Dr. Cohn on Tuesday and get her opinion on this matter. I am bringing films downtown tomorrow and the tumor board will meet on Thursday and the X-ray board meets on Friday. Dr. Cohn will then give us her conclusions on Tuesday.
We will continue to update as we get more information. Please keep John and his doctors in your thoughts and prayers.
God Blesss,
Jennifer
Thursday, November 14, 2002 at 03:30 PM (CST)
Family and Friends,
John is still treading water, no improvmement but not getting any worse. I am hopeful things will take a turn for the better soon. On a much more scary note during a routine X-ray this week, the docs have informed me there is a lesion on a bone in John's arm. We are scared to death. Dr. Cohn is in contact with the docs at Lutheran Generanl and further testing is being done. We hope to know the results soon. I will update again when I know more. Please keep John and his doctors in your prayers.
God Bless,
Jennifer
Wednesday, November 13, 2002 at 01:34 PM (CST)
Family and Friends,
John is still inpatient at Lutheran General Hospital in Park Ridge. His condition has worsened over the past 24 hours and is now requiring oxygen. He is receiving nebs iv steroids and iv antibiotics and fluids. We hope he turns the corner soon and does not require any more assistance. Please pray for John and his doctors. As usual John is the medical mystery.
God Bless,
Jennifer
Tuesday, November 12, 2002 at 12:42 PM (CST)
Family and Friends,
Please say extra prayers for my prince. John was admitted to Lutheran General Hospital yesterday for respiratory distress. He is stable and doing better but the docs have no clue what is going on inside his little body. At last count his White Blood Cells were 43,000 normal is under 11,000. And no signs of infection. I'll update when I know more but please keep John and his doctors in your prayers.
God Bless,
The Kwasinski's
Sunday, November 03, 2002 at 10:47 PM (CST)
Friends and Family,
Sorry for the delay in an update but I had to gather some thoughts before aporoaching this. As scheduled John was at the hem-onc clinic on Tuesday. Dr. Cohn is very positive about John's future, and has decided not to heed Dr. Laqualgia's recommendations. No VMA/HVA no scans nothing until January 7. John did have a CBC w/differential on Tuesday. I'll get to those results in a few moments. Dr. Cohn told us everything was going good and the bloodwork looked fine. Nevertheless, I will be in contact with NY this week to see if Dr. LaQualgia wants John in NY for a MIBG and if he wants us to send urine via FED EX for VMA/HVA testing. I have no idea what he is going to say but I do know Dr. LaQualgia and Dr. Cohn had a lengthy discussion about John.
I think it is quite obvious I have major trust issues with Dr. Cohn, I believe rightfully so. This has made a difficult situation even more difficult. We were told on Tuesday John's blood looked good, however, the auto differential that was done was elevated. The auto-differential is a morphology of the white blood cells. John's basophils, eosinphils, and lymphocytes were elevated. His neutrophils and monocytes were in the normal range. Morphology is a complicated matter because elevation in these cells could mean anything from an allergic reaction to leukemia. Hence the importance for a manuel differential when the auto comes back elevated. John has not had a manuel done and is not currently scheduled to. I am going to try to convince the pediatrician to order one up this week but he is very hesistent on stepping on the onc/doc's feet. I am also going to see what the docs in NY think about running a manuel differential. These little issues keep complicating my trust issues with Dr. Cohn. I feel as though I have to constantly double check everything she does and we are talking about a very heavy-hitter in the world of neuroblastoma.
On a brighter note I want to send my congratulations to Dr. Kushner- John's onc-doc in NY- He finished the NYC Marathon in 3 hours 18 minutes this morning. Way to go Dr. Kushner.
Everything else is going quite well. All three kids are healthy what more can you ask for.
God Bless,
Jennifer
Thursday, October 24, 2002 at 05:34 PM (CDT)
Dear Family and Friends,
I would like to ask everyone to remember a very special family in your thoughts and prayers. Dreau earned his angel wings Tuesday afternoon. Dreau beat neuroblastoma but succombed to the after effects of treatment. He has been fighting since August in PICU. On Monday the docs told Tammy and Phil Dreau was in desperate need of a liver and small intestine transplant. On Tuesday he took his last breath. Please remeber this family in your thoughts and prayers. Once again God's heaven has gained a very special soul. Tammy and Phil were awesome and bent over backwards to help us out while we were in NY. Phil would walk me to the hospital while John was inpatient so I could relieve my Phil. Again please remeber Tammy Phil Dreau and baby brother Chandler in your thoughts and prayers.
On our front everything is going quite well. I am starting to get nervous because we have clinic on Tuesday. They will be doing a VMA/HVA (which takes about a week to come back) Last month John's was higher than it had been in August and this level should be decreasing. I think it is just par for the course to be nervous but I hate the feeling.
John is still always smiling what an inspiration. His hair has really started to come back and boy is it blonde. I think my grandfather would call him a toehead. More and more his personality is developing. He is quite the attention seeker. He has mastered this unique cough when someone is not at least looking at him. Ahh the price we have pay for recovery.
Please remember John next week while he undergoes testing. Prayers are very powerful. John is indeed a miracle.
God Bless,
Jennifer
Saturday, October 19, 2002 at 01:58 PM (CDT)
Dear Friends and Family,
As you all know John is approaching six months of age. He will officially be six months on Monday. I am going to share my feelings briefly here.
Dearest John,
It has been six short months since I was blessed with your birth. Somehow I made it throught the nine long grueling months. But on April 21 at 9:30 in the morning those nine months seemed like an eternity ago. Boy was it worth every moment. Family and friends all came to welcome you into our family. One thing that everyone seemed to agree upon was you were a very old soul, a soul who had much work to be done, and a soul with wisdom beyond our understanding. We had no idea how fast you wanted to accomplish your work, just four weeks later the "C" word was uttered and my world was turned upside down. "Why me" I immediately pondered. Why my precious baby boy. I soon moved to "Why John". I quickly realized this line of thought was not for me to ask what good would an answer do anyway? We had a battle and it was time to fight. Fight you have done and win you will. Where ever this journey takes us I am prepared to go. You have given me the courage to never give up to keep seeking and for you will find.
John you are my hero and a poem only befitting of you..
Quiet Hero
My hero is the quiet type,
no marching bands or media hype,
but through my eyes it's plain to see,
a hero, God has sent to me
With gentle strength and quiet pride,
all self concern is set aside,
to reach out to our fellow man,
and be there with a helping hand.
Heros are a rarity,
a blessing to humanity.
With all they give and all they do,
I'll bet the thing you never knew,
my hero will always be you.
John you'll always be my hero. You could have chosen to battle the NB monster with disdain and hatred but instead you have fought with a smile. A smile no one can wipe off your face. You laugh and giggle while most would cry or complain. I am truly blest to be able to call you my son.
All my love,
Mom
Friday, October 18, 2002 at 05:53 PM (CDT)
Dear Friends and Family,
First a Quick Note on a few Dear friends of ours:
Two very special children Cory and Brendan have lost the battle to NB, both valiently fought but ultimately succombed the ugly monster. Cory battled with Stage III NB for 5 of his 6 brief years and Brendan battled Stage IV for the past year. Neuroblastoma is a mean ugly monster and is my "Public Enemy #1" I just ask everyone to remember both Cory's and Brendan's family in your paryers. Both Cory and Brendan will always be remembered for now they are angels watching over us. God's Heaven is surely a better place.
For now, my little soldier is in a waiting pattern. After speaking at length with Dr. Laqualgia, we and Dr. Laqualgia feel it is in John's best interest to hold off interceding at this point. Indeed, Dr. Laqualgia sees a mass not present in August, however, the mass is tiny approx. 1x2 cm (he always over measures masses). The mass is presenting in the orignal primary tumor bed which is worrisome. So for now we have increased the VMA/HVA urine test. Currently John's levels are on the rise but still within the "normal" range. Dr. LaQualgia also wants an MIBG (a Nucleur Medicine scan in which a labled radio-active isotope is injected 24 hours prior to "table time" this isotope is taken up by the neuroblastoma cells and lights up on the scan films) Since NB doesn't always have MIBG uptake if the mass appears larger on the Dec.1 CT films Dr. Laqualgia feels he will intercede. One of the major reasons Dr. Laqualgia feels we can hold off right now is because of these metal clips Dr. LaQualgia put in John. He put these clips very tight up against the aorta and the left kidney and these clips are remaining stable. Dr.LaQualgia feels if we were dealing with an aggressive tumor the clips would be disturbed. I just love living in the 21 st century and the best the docs can say is well the metal clips are stable so let's hold off for now. I really would love to hear no way not neuroblastoma. But I must add we truly trust Dr. LaQualgia and feel he has John's best interest at heart. He is definitely the only doctor in this whole debacle I truly trust without hesistation. So with all that said all of us are in need of major prayers.
We will be at the clinic on Oct 29 for the VMA/HVA test as well as a routine blood draw. All my toes and fingers are crossed for stable VMA/HVA.
God Bless,
Jennifer
Saturday, October 05, 2002 at 11:44 AM (CDT)
Dear Family and Friends,
I am so sorry I haven't updated in quite some time. We have been very busy with routine follow-up as well as very busy with Rebecca and Philip. John has had to see an ENT, cardiologist, and pulmnologist. The cardiologist has given John's heart a clean bill of health for the next six months. Every six months for the next five years and yearly after that John will have and echocardigram and EKG to determine his heart function. One of the chemo drugs he received has the effect of aging the heart rapidly especially among infants. The pulmanologist has diagnosed John with basic asthma most likely as a result of being intabated for six days. The ENT dectected a hering loss, but we will redo the tests in six months. People are supposed to hear to 25 decibles and John can only hear to 27 decibles. Not to bad. Some peolpe have asked why John needs so much follow-up resulting from only two cycles of chemo. Well the answer is quite simple, infants are in nature growing very rapidly, every aspect of them. Since chemo attacks rapidly dividing cells it really attacks children and infants especially very hard. The medical community is finally seeing long term survivors of childhood cancer and they all agree something needs to be found (preferably a cure) which will improve the long term side affects of chemo among the infants and children. Just the rate of a secondary cancer (usually AML) is around 20% for children receiving as little a four rounds of chemo. The odds for infants receiving four cycles runs about 30% pretty disgusting to me. Since all four drugs John received have the potential to create a secondary cancer we will just have to be vigilent in his pre-puberty years.
On Tuesday we took John for a CT of his chest abdomen and pelvis to eveluate his diagnosis status. Since mass confusion abounds with these films please pray the results turn out to be awesome. The report reads as follows:
Comparision Date 5/24/02
"There has been interval decrease in the size of the previously seen left suprarenal mass. Soft tissue fullness remains in the left suprarenal region consistent with interval surgical resection. Clips are identified in the suprarenal region consistent with interval surgical resection."
Findings:
Interval decrease in size of left suprarenal mass.
Diagnosis:
Same
This report has troubled me and films are on their way across the country to New York. In August our report read NO EVIDENCE OF THE PREVIOUSLY SEEN LEFT SUPRARENAL MASS. Soft tissue fullness is noted in the left suprarenal region consistent with interval surgical resection. Clips are noted in the left suprarenal region consistent with interval surgical resection.
For those who do not know clips are the medical term for scar tissue. And soft tissue fullness is just swelling.
Dr. Cohn (our home onc-doc at Children's Memorial Hospital)is not at all concerned with these findings. She is blaminmg my disdain with the report on "jargon" ,however, I feel a second opinion is warrented. The radiologist who read John's films is refusing to speak with both myself and my pediatrician about her report ( this is really adding what is hopefully undo duress to the situation).
As soon as I hear somthing back from NY I will update hopefully with awesome news that John remains to be Cancer-Free.
Please pray that this is all just a result of "jargon"
God Bless,
Jennifer
Friday, September 06, 2002 at 09:34 PM (CDT)
Dear All,
We made through the first two teeth. John was quite fussy but that has disappearedwith the rupture of tooth number two. How am I going to this 18 more times. I guess I should just remind myself how much worse it could be.
Many people have commented on how strong Phil and I are. I never know quite what to say because, in fact, we are very fragile when it comes to cancer. So I just wanted to share a very fitting response.
The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock" Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you'll see the point I make.
An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amouts of pressure and cannot be cracked nor broken. Yet the same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.
That's where the parents of children of cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. We are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. Balancing an egg while running a household, going for doctor's visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Ocassionally, the angle will be off and the shell will break, shattering hope and neatly secured appearances of a truely fragile existence. Unlike Humpty Dumpty, though, we will pick ourselves up and put the pieces back together again.
In addition, I must add we would not have ever been able to put the pieces back together without the help and support of many family, friends, as well as complete strangers who entered our lives and gave us a glimmer of hope. Each and every glimmer added up to rays which kept the night shining bright. Fron the bottom of our hearts Thank You!
Please continue to keep John in your prayers!
God Bless
Jen
Wednesday, September 04, 2002 at 06:00 PM (CDT)
Dear All,
Hmm, Where do I begin? John is doing great. He got his first tooth yesterday Go John Go! Dr. Kushner called yesterday and informed us John's cathecolimines were normal in August. So far so good. We still haven't reached a consensus in regards to follow-up but I am going to start hounding the docs tomorrow. Not knowing has become old.
Rebecca started first grade yesterday and Philip started his second year in Pre-K. Thank heaven for small favors. I never thought I would enjoy school as much as I do now.
Please keep praying although, John is officially NED (no evidence of disease) he has a long road to travel. We just pray the road is straight (no relapse). John will not be considered cured for five years, probably the longest five years of my life. I know we have been blessed beyond belief, just meeting John is a blessing.
I also have to ask once again for some special prayers. Please pray for Matt who is battling his third relapse of ALL. Please say some very special prayers for Brandon, He goes to Dana Farber next week for scans and we are all praying for awesome scans. Also say a special prayer for Brendan, Akaida, Jay, and Adam they are all fighting progressive Neuroblastoma.
God Bless,
Jen
Friday, August 30, 2002 at 09:07 PM (CDT)
Dear All,
Everyday life seems to challenge you to the limits. Today we received a call from NY and a dear friend of ours has relapsed. Matt has been fighting ALL for three years now. He was diagnosed at 3 achieved remission with cytotoxic therapy and relapsed 6 months later. He is now 90 days out of transplant and has relapsed again. I just ask everyone to say some very special prayers for Matt and his family.
John is doing good smiling and cooing more and more. I talked to Dr. Kushner in NY today and we are still waiting for cathecolimines to come back. We are really hoping they are back on Tuesday the waiting is trecherous. Dr. Kushner is debating the follow-up issue He thinks he wants to get a baseline MIBG in September but is not 100% positive. He is supposed to be meeting on Tuesday morning with Dr. Cheung and Dr. Kramer so maybe they can come to some kind of consensus. John's case is a bit confusing because he has the typical neuroblastoma tumor which is rarely seen in an infant.
A lot of people have asked me about his tumor characteristics I am going to post them here because it is much easier than sending everyone an individual e-mail.
MYCN=3
neuron specific enolase=positive
DNA=1.75
Shimada Report
poor stroma
undifferentiated
MKI uptake=200
Chromosome 1p is still pending I should be getting that in the mail next week (Hopefully)
For those who do not understand any of this and want to please feel free to e-mail me privately at jrkwas@msn.com.
As soon as I talk to Kushner I will be sure to update with all the reasons for their confusion as well as what the plan is.
Remember September is Childhood Cancer Awareness Month!!!!
Again We wish to thank everyone for their prayers and support.
Please do not forget to pray for Matt!
God Bless,
Jen
Monday, August 26, 2002 at 04:09 PM (CDT)
Dear All,
Boy a lot happens in just two days. Saturday was Rebecca's birthday I can't believe it but she is officially six years old. Sunday I took Rebecca shopping and out to lunch. She decided she wanted to go to Taco Bell for lunch. We went to the mall and Toys R Us after lunch. She had 70.00 to spend at Toys R Us so she decided she wanted a Game Boy Advance. At the mall I bought her two pair of pants and a top. As a mother you know you are in trouble when your six-year says "Look mom these are so cool they have flare legs" Needless to say she got them. While Rebecca John and I were out for Rebecca's birthday Phil and Philip went out sailing. Philip came home and informed me daddy let him swim in the lake. But it was ok because daddy tied a rope to his life jacket. Of course I cringed.
Today John had his four month physical with Dr. Rosenbaum, he is up to 14lb 8oz and 25 1/4 inches. He is growing like a weed. Dr. Rosenbaum is a bit concerned with all the wheezing and is sending us to a pediatric pulmnologist. Since there are only two in the Chicago area we can not get in until December 10th. John also needs to be followed by a cardiologist due to the toxic affects chemo can have on the heart. We will be going to see Dr Dubrow on September 30th. John will also have full audiological testing done on September 24th to access his hearing post-chemo. Some of the chemo drugs he received can cause nerve damage in the ears. We still have to make an appointment with a neurologist to access his brain function post-chemo. This is not as pressing because brain damage is the rarest of side effects and John seems to neurologically progressing just fine. After an hour at Dr. Rosenbaum's office discussing all the other doctors we have to see I am all doctored out.
John will also be starting physical and occupational therapy next week. He is delayed in gross and fine motor about 70%. No great shakes considering the docs pretty much cut him in half last month. The therapists will come to our house so I won't have to drag poor John all over town every day.
Again I thank you for your prayers they are working!
God Bless,
Jen
Friday, August 23, 2002 at 08:57 PM (CDT)
Dear All,
Our feet are firmly planted on Chicago soil and Rebecca and Philip have rejoined us from their hiatus in WI. We are all very happy to all be together again.
John's CT scan was CLEAN AND STABLE!!!!!!!!!!!!!!!!!!!!!!!!!
His cathelomines will be back next Thursday, however, the docs expect them to be normal. Awesome!
We had the opportunity to speak with Dr. Cheung for almost an hour. I had four pages of questions for him and if I recall correctly he could not answer one with statistical data. (The data just does not exist as of yet) Dr. Cheung informed me all my questions were questions he would love to be able to answer because the researchers would be great strides ahead of where they are today. Dr. Cheung did assure us, based on his experience, that John's overall prognosis is great, however, much caution and follow-up must be in place for the next five years. He reminded us that neuroblastoma does not follow the textbooks and it needs to be taken seriously. He also reiterated that neuroblastoma is different in every child and despite all the research they really do not know which child will relapse and which child won't.
Again I would like to thank everyone for their prayers. They have been answered John is doing great. If you haven't already done so order the gold ribbons. These children deserve recognition
God Bless
Jen
Monday, August 19, 2002 at 06:22 PM (CDT)
Dear All,
Rebecca and Philip have just left for WI with Boo and Dzia they should have a lot of fun. Phil and I are just finishing our New York readiness checklist (we have this down to a science). The kids had so much fun last night at Chuck E Cheese's although Phil and I were Chuckied out by the end of the night.
John is doing great, gaining weight and growing like a weed. As soon as we get back from New York I am going to get the pictures on I tried, however, I just couldn't figure out the software.
Since John has decided to do his job with fierce courage and determination I have to ask everyone to do John a favor, please visit www.childhoodcancerawareness.org and order your Gold Ribbons, they are free of charge. Next month is Childhood Cancer Awareness Month and the gold ribbon worn on your lapel will signify your support for John as well as all the children who are battling cancer. I must say, with all my heart, these children are the most courageous and honorable people I have ever met.
I wish to also thank everyone who has prayed for John-keep praying your prayers are working.
God Bless
Jen
Sunday, August 18, 2002 at 12:41 PM (CDT)
Dear All,
Phil, I and the kids had a great time last night. The kids ended up falling asleep about 9:00 on the boat. We staye out on the Lake until after the fireworks. We got back to Montrose Harbor at about 1:00 AM. A bit too late for me but considering all the fun it was worth it. Phil took the kids to church this morning and we are now getting ready to take Rebecca to Chuck E Cheese's for her birthday. She'll be 6 next Saturday. Where has the time gone?
We will be leaving for New York on Tuesday say a prayer for clean scans and normal cathecolimines. Cathecolimines are naturally occuring hormones that usually elevate when neuroblastoma is present. Since John's were elevated before chemo and during chemo cathecolimines are a great indicator for him.
I must also add that I have begun my "crusade" to help chidren with cancer. Most of you already know Phil and I were not presented with any options at the time of John's diagnosis. We had to find out there was an alternative to chemo on our own. I feel it is imperative parents know there are multiple approaches to attacking and beating childhood cancer. Without this knowledge we, as parents, are powerless. We, as parents, must be advocates for our children and too few parents know this.
Please say a special prayer for Akaida, Robyn, Jay, and Adam they are fighting progressive neuroblastoma.
Love to All,
Jen
Saturday, August 17, 2002 at 02:32 PM (CDT)
Dear All,
Today has been a wonderful day John went to grammy's for an overnight visit. Phil and I will be taking Rebecca and Philip to the boat for the Air and Water Show. It should be loads of fun for all. Phil and I are getting ready for our trip to New York next week and the kids are looking forward to visiting Boo and Dzia. Let's all pray for clean scans next week, so we can officially be NED (no evidence of disease).
Love to All,
Jen
Saturday, August 17, 2002 at 10:17 AM (CDT)
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