With this round 8 of chemo (which he started today), we are going to try skipping the G-CSF shots post-chemo and see what the melatonin can do on its own. If it works, we may stick with it as we think the G-CSF shots might be responsible for some if not all the mild leg/joint pain he's been experiencing lately.
5/07/2007
Nutrition update
Max's nutrition has made an amazing recovery from four weeks ago. You'll recall at the end of March post that he had just received his g-tube and was still suffering the effects of not eating much for a few weeks plus the flu. We had also come to find out that he was osteopenic, meaning he didn't have enough minerals in his bones. The g-tube is amazing. Max weighs close to 40lbs now and has more energy. He's gaining muscle mass and his limbs don't look so painfully skinny. His face has filled out and he smiles a lot. Across the board, his calcium, mag, and phosphorous are within the upper range of normal, which is good. Further, his blood counts were high enough that he didn't need a transfusion this week, which I'm attributing to the daily doses of 8mg of melatonin he's getting at bedtime, which has been shown in studies to stimulate platelet and WBC production.
With this round 8 of chemo (which he started today), we are going to try skipping the G-CSF shots post-chemo and see what the melatonin can do on its own. If it works, we may stick with it as we think the G-CSF shots might be responsible for some if not all the mild leg/joint pain he's been experiencing lately.
With this round 8 of chemo (which he started today), we are going to try skipping the G-CSF shots post-chemo and see what the melatonin can do on its own. If it works, we may stick with it as we think the G-CSF shots might be responsible for some if not all the mild leg/joint pain he's been experiencing lately.
5/05/2007
5/01/2007
Ya Can't Let Cancer Ruin Your Day outing #1
Inspired by Syd Birrel (www.JamesFund.ca), whose son James coined the phrase, "ya can't let cancer ruin your day," I rented a convertible to take Max to the Wild Animal Park this past Saturday.
Max getting ready for the open road.
Cruising past Lake Hodges, between RSF and Escondido.
What day at an animal park is not complete without Spongebob?
On our way to the new "heart of Africa" ride which takes you around the park.
Max the bird.
Max getting ready for the open road.
Cruising past Lake Hodges, between RSF and Escondido.
What day at an animal park is not complete without Spongebob?
On our way to the new "heart of Africa" ride which takes you around the park.
Max the bird.
4/30/2007
Saying No to Penelope - WSJ article about neuroblastoma
PAGE ONE
Saying No to Penelope
Father Seeks Experimental Cancer Drug,But a Biotech Firm Says Risk Is Too High
By GEETA ANAND
May 1, 2007
NEW YORK -- John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at New York University Medical Center here, sucking her thumb and clutching her favorite teddy bear.
For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn't blocking the way.
Neotropix Inc. of Malvern, Pa., says it would like to help, but the drug may not be safe for a child and dispensing it would be bad business. "For us to provide the drug to this child would be to put at significant risk a small company with limited financial resources," says P. Sherrill Neff, managing partner of Quaker BioVentures, a major investor in the firm, which is trying to tie up a vital round of financing of about $20 million. "You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient," he says.
The deadlock reflects an increasing tension between individual patients and companies using the revolution in understanding biology to develop new medicines. Ideas for treating deadly diseases are proliferating, and the Internet carries hints of promising results into the homes of dying patients. They are pushing for the chance to bypass the laborious approval process and receive quick access to experimental drugs when all else has failed.
In the U.S. Court of Appeals in Washington last month, a lawyer for a patient-advocacy group argued that patients' constitutional rights are violated when they are deprived of medicines in testing that could save their lives. The Abigail Alliance for Better Access to Developmental Drugs wants the FDA to allow patients to buy drugs in testing directly from companies and to allow the companies to profit from the sale. A three-judge appellate panel last year ruled in favor of the alliance. The FDA appealed the case to the full appellate court, which is scheduled to rule later this year.
Lawyers for the FDA argued that broad access to experimental drugs could harm patients and undermine the incentive for them to participate in clinical trials, the studies companies are required to perform in humans to prove safety and efficacy.
"This is a huge dilemma we face as a society -- it's moral and it's ethical," says Patty Delaney, director of the FDA's cancer liaison program. "We have the incredible pain of an individual -- sometimes it's a 4-year-old child, which pulls at everyone's morality -- versus the societal issue of what happens if a small biotech company diverts its resources to a child or ill mother?"
Mr. London, 40 years old, was raised in Manhattan and spent seven years at Highbridge Capital Management, one of the largest hedge funds in the world. He co-founded SuttonBrook Capital in 2002 with $30 million in capital and built it into a $2 billion hedge fund. On a blind date in 2001, he met his wife, Catherine, a free-lance writer and editor. They married the next year, and she gave birth to Penelope, their first child, on July 6, 2002.
Growth in the Ribs
Penelope was 16 months old when she was diagnosed with neuroblastoma, a rare cancer that develops from nerve tissue and often appears first in the adrenal glands. By the time her parents noticed a growth under her ribs and took her to Mount Sinai Hospital, the disease already had spread to her lymph nodes, liver and bones.
Four days later, Ms. London delivered the couple's second child, a boy named Oliver.
Doctors told the Londons that Penelope had a particularly aggressive form of neuroblastoma and stood just a 25% chance of being cured. Over the next year, she underwent high-dose chemotherapy, radiation, a bone-marrow transplant and surgery.
A few weeks after the treatment ended, the family went on vacation to the Atlantis Paradise Resort, a hotel with a marine park in the Bahamas. They had just gotten off the plane when they noticed a lump on Penelope's neck. They tried to ignore it and enjoy the vacation, taking turns holding her in the underwater tanks for hours to indulge her fascination with the giant stingrays.
Soon after they returned to Manhattan, they discovered the cancer was back. Radiation shrank the tumors in Penelope's neck and skull, but the cancer broke through again after several months, in what would become a pattern. Each time Penelope's cancer progressed, the Londons tried a new treatment -- moving toward therapies earlier and earlier in human testing. Some treatments put her cancer into remission, others kept it in check for weeks, and some didn't work at all.
Mr. London combed the Internet and connected via Web sites with parents of other children with neuroblastoma. When he heard of promising research, he phoned the physicians or scientists involved, pressing them about whether their work could benefit Penelope.
Several times, the Londons say, their doctors told them they were out of options and advised them to take Penelope home to enjoy the time they had left. "More than John, I was willing not to try anything else because I just wanted Penelope to be comfortable," says Mrs. London. "But John just couldn't do that. And many times, he was right. Penelope would not be alive today if it weren't for him."
"Penelope was still laughing those deep belly laughs of hers, still running around and looking healthy," says Mr. London. "I just couldn't give up on her."
Not wanting to miss time with his daughter, Mr. London stopped going regularly to work at the Manhattan office of SuttonBrook. Running his hedge fund from Penelope's bedside at home, he often stayed up all night devouring medical research papers. One day, sifting through 600 papers that were presented at a conference, he read about an antibiotic used overseas that appeared to help a child with neuroblastoma. Pediatric-cancer specialist Giselle Sholler wrote that the child's cancer went into remission after being treated with the antibiotic plus chemotherapy. Dr. Sholler agreed to treat Penelope.
The combination therapy seemed to work, says Dr. Sholler, an assistant professor at the University of Vermont who had been studying the potential treatment in mice. The walnut-size lump over Penelope's collarbone shrank to less than the size of a pea, Dr. Sholler says. For three months, as Penelope's curly brown hair began to grow back, she played like any other child, dressing her dolls, making vanilla pudding with her older half-sister, Isabelle, and teasing the family cat, Charlotte.
"She had an incredible ability to bounce back," says Elizabeth Raetz, a pediatric oncologist at NYU Medical Center who has been treating Penelope and advising the family since she was diagnosed.
Through the struggle, Mr. London grew close to the parents of other children with neuroblastoma. "I felt so alone in going beyond what the medical establishment wanted me to do, that the parents of other sick kids were the only ones I could truly relate to," he says. He invested $100,000 in a fund that is paying for Dr. Sholler to test the antibiotic in combination with chemotherapy in a clinical trial. Dr. Sholler has enrolled eight patients in her trial and most have had their tumors shrink without many side effects, she says, although she cautions that the tests are still at a very early stage.
"John's passion for finding a cure for this disease and his daughter made this trial happen," she says. "And all of these children are seeing a better quality of life."
Cancer Breaks Through
Last November, Penelope's cancer broke through again. After unsuccessfully trying two other experimental drugs, Mr. London was particularly anxious when a parent emailed him in March about Neotropix's therapy.
The experimental medicine is a virus that strikes pigs and appears, in early test-tube and mouse experiments, to attack certain cancer cells in humans. The approach is new and risky, Neotropix Chief Executive Peter Lanciano notes, because it involves injecting a virus into humans that they presumably haven't been exposed to before. The drug is still in its earliest phase of trials for safety. It was tested in just six human beings over the past year. The company hopes to finish the first stage of testing over the next 18 months, giving the virus to another 49 patients, most with small-cell lung cancer.
Mr. Lanciano says that the week he took over as CEO nine months ago, the FDA put Neotropix's trial on hold because the first patient died. Only after four months of testing and analysis was Neotropix able to resume its trial, having demonstrated that the patient died from cancer and not the therapy.
That delay was on Mr. Lanciano's mind when Mr. London and his supporters began calling. The CEO says he wanted to help, but he thinks the drug is too early in testing to be used safely by a child. To give Penelope the dose that was effective in mice, he says he would have to multiply the top dose used in humans so far by 100,000 times. Normally drug companies are careful to raise the experimental dosage in small increments to detect side effects before they become lethal.
"The question is: Can we really help or would we do more harm?" asks Mr. Lanciano.
Mr. London argues this is a risk worth taking. "We're not talking of testing an unproven drug in a child who is perfectly healthy and running around," he says. "My daughter is already in so much pain and is so sick she can't get out of bed. If anything has a prayer of saving her, how can you argue it's not the right thing to do?"
Investors have put about $14 million into Neotropix, which was founded in 2003 by a former Novartis AG scientist. Last year, Mr. Lanciano, a former executive at several biotech companies, took the helm.
Mr. Lanciano and Neotropix board members have expressed concern that the FDA will force Neotropix to put its trial on hold again if Penelope dies. FDA officials called Neotropix and reassured the company that this isn't the case, Mr. Lanciano says. A colleague of Mr. London who is an internist had approached the FDA and asked it to deliver that message.
Despite the verbal assurances, the CEO says he is still worried. "You never have the ability to wash your hands of any adverse events the patient has," says Mr. Lanciano.
FDA officials, agreeing only to speak generally about the issue, said the agency would not hold a company accountable for the death of a very sick patient receiving therapy as a desperate effort.
"The FDA has good appreciation for the fact that we're dealing with people mortally ill and this is a last-ditch effort," says Richard Klein, director of the agency's HIV program. The notion that the FDA would halt trials over a death in such circumstances is "more of a myth, or urban legend," he says.
Nonetheless, "there aren't any absolutes," says Ms. Delaney, the FDA's cancer liaison. "We can never say: 'We won't pay any attention to safety' " when a patient gets a drug.
The Neotropix board held several meetings on the question of giving the drug to Penelope, Mr. Lanciano says. At one point, the board called an ethicist for an opinion. Urged on by the London family, patient groups and politicians, including the staff of House Speaker Pelosi and Pennsylvania Gov. Edward Rendell, lobbied on behalf of giving the drug to the child.
On April 18, the Neotropix board decided not to provide the drug. Yet calls from politicians and Mr. London's supporters continued, Mr. Lanciano says. Finally, four days later, a Sunday, Mr. Lanciano sent out an email, copying them all.
"Tremendous pressure has been brought to bear on all levels of the company" to try to get it to change its position, he said in the email. "We will not do so."
Mr. Lanciano, 50, says he sympathized, having lost his wife several weeks earlier to cancer at age 51. He tried to get her in clinical trials for pancreatic-cancer treatments, but she didn't qualify, he says.
"If I were that father and mother with a dying 4-year-old, I'd be doing exactly the same thing," says Mr. Neff, the partner at the venture-capital firm that has invested in Neotropix. "There is no right answer," he says. "But in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development."
Mr. London is now trying a new avenue. A day after Neotropix turned down Penelope, a friend Mr. London met on a parents' Web site told him about another company, Jennerex Biotherapeutics, also with a virus in the earliest phase of human testing for cancer. Mr. London reached the company's chief executive, David Kirn, on his cellphone and the two spoke for an hour. Dr. Kirn, a cancer specialist, agreed to provide his experimental drug to Penelope if a hospital would agree to administer it.
"If you are in the position where a loved one is dying of a disease, it is impossible to understand how any company can withhold something potentially beneficial," says Dr. Kirn. He says his company has raised $10 million so far, mainly from individual investors who leave medical decisions entirely up to him.
William Carroll, director of pediatric oncology at NYU Medical Center, said Saturday he's trying to get permission to treat Penelope with Jennerex's experimental virus at his hospital. He needs approval from several hospital committees that monitor clinical trials and biosafety because the treatment is a live virus. That process would normally take months.
Dr. Kirn is pitching in to make the case. "We're asking hospitals to compress a six-month procedure into a week and that's very difficult," Dr. Kirn says. "You're asking them to bless a plan with less than the full data that is normally available. But you're asking them to do it for a heroic cause -- to try to save a child."
Running Out of Time
Mr. London knows the family may have run out of time.
Wearing pink pajamas in a ninth-floor room at NYU Medical Center last week, Penelope, frail and partly bald, tucked her favorite stuffed bear under her arm as she watched an Animal Planet television show about a sick walrus that was saved. She cried now and again, sending her parents rushing over. A bowl of half-eaten oatmeal sat on the table; Mrs. London asked a friend to make it with extra butter to try to fatten up her daughter. Mr. London's computer was open to the Web site he uses to keep family and supporters updated about Penelope.
The Londons brought Penelope to the medical center Wednesday because her pain medicine wasn't working. They thought she needed stronger drugs to stay comfortable. The plan was to switch her to methadone, a powerful narcotic, and take her home.
On Friday night, after Penelope had struggled for two days with the pain, her eyes lit up when her big sister, Isabelle, appeared in the doorway. The little girl, who hadn't gotten out of bed in days, pulled herself up -- batting away the outstretched arms of her parents -- and wobbled over to sit on the cot beside her sister. Later, when Dr. Raetz, the oncologist, stopped by, she found Penelope, her arm shaking a little, putting the numbers of a block puzzle into the right spaces, not randomly but meticulously, in ascending order. "She's a very determined little girl," Dr. Raetz said.
"We go into this with our eyes open," Mr. London said, talking in another room out of Penelope's earshot. "The chance of anything bringing her back from the abyss now is very low. But the only thing I know for sure is if we don't treat her, she will die."
Mr. London and his wife say they are searching Penelope's big brown eyes for clues as to how long she wants to continue to battle for life.
For now, says Mr. London: "We see she still wants to fight."
Write to Geeta Anand at geeta.anand@wsj.com
URL for this article:http://online.wsj.com/article/SB117798196751887629.html
4/26/2007
Ryan - angel 4/26/07
This disease sucks. Ryan only got home (Albany, NY) last night from Houston (MD Anderson) where he was being treated. Visit Ryan's site
4/23/2007
Comments!
We'd love to hear from you regarding your thoughts to our posts.
Please click on "comments" at the end of each post and give us your feedback, thoughts, feelings, etc. We love to read them and they're easy to look back on when attached to the blog.
We look forward to hearing from you!
Please click on "comments" at the end of each post and give us your feedback, thoughts, feelings, etc. We love to read them and they're easy to look back on when attached to the blog.
We look forward to hearing from you!
4/22/2007
#7 Complete
Max is finished with round seven of his chemotherapy and is doing great. (I can't say enough good things about that g-tube! Amazing what good nutrition can do for a kids overall well-being.)
While finishing up his last day of chemo this week we were visited by a pair of storytellers who work at the hospital. They were very funny and told us (acted out) a couple of stories. Max actually set aside his Leapster and joined in on the fun shouting directions and laughing.
Our weekend has been very nice. Saturday morning we finally took the Rokenbok (loaned to us by some great friends - thanks!) and set it up in the livingroom on the train table. The kids are having a great time playing with it. Even Nic enjoys putting cargo-balls in the trucks for Max and Hannah to dump. Max has figured out how to drive those trucks really well. Hannah likes to fill the monorail trailer with cargo-balls then drop them on other trucks from high above.
Andy and Max left this morning on a run to the local nursery to pick up some flowers for the yard since it's Earth Day. Max also wants to find a fresh packet of pumpkin seeds in hopes that we can grow a pumpkin for Halloween. The kids are currently growing a batch of peas behind the playhouse just waiting for the day they produce. Hannah decided to stay home and explore the yard in her own fashion. I think chemo week makes Hannah miss home and homelife. Yesterday she stayed home, too. Laid in the sun, decided to wash the playhouse, got her clothes wet and ended up naked in the backyard. Ahh, to be a kid again!
Tonight we start the fun gcsf-shots again. I have to get to a store today and buy a Bionicle for Max's shot prize per his request. I have to tell you how well he does with those shots. He and I have our own jobs each night for the shots and he gets through it with no tears. He's truly amazing.
Tomorrow begins a new week and back to the grind of fitting in as much school as possible for Max with scheduled clinic appointments twice a week. Monday he goes in for vitamin C and zometa infusions; Thursday just vitamin C. Oh, and don't forget blood draws and possible blood transfusions. There's a lot of in-the-car-time for Max and Nic every week.
Until next time...
While finishing up his last day of chemo this week we were visited by a pair of storytellers who work at the hospital. They were very funny and told us (acted out) a couple of stories. Max actually set aside his Leapster and joined in on the fun shouting directions and laughing.
Our weekend has been very nice. Saturday morning we finally took the Rokenbok (loaned to us by some great friends - thanks!) and set it up in the livingroom on the train table. The kids are having a great time playing with it. Even Nic enjoys putting cargo-balls in the trucks for Max and Hannah to dump. Max has figured out how to drive those trucks really well. Hannah likes to fill the monorail trailer with cargo-balls then drop them on other trucks from high above.
Andy and Max left this morning on a run to the local nursery to pick up some flowers for the yard since it's Earth Day. Max also wants to find a fresh packet of pumpkin seeds in hopes that we can grow a pumpkin for Halloween. The kids are currently growing a batch of peas behind the playhouse just waiting for the day they produce. Hannah decided to stay home and explore the yard in her own fashion. I think chemo week makes Hannah miss home and homelife. Yesterday she stayed home, too. Laid in the sun, decided to wash the playhouse, got her clothes wet and ended up naked in the backyard. Ahh, to be a kid again!
Tonight we start the fun gcsf-shots again. I have to get to a store today and buy a Bionicle for Max's shot prize per his request. I have to tell you how well he does with those shots. He and I have our own jobs each night for the shots and he gets through it with no tears. He's truly amazing.
Tomorrow begins a new week and back to the grind of fitting in as much school as possible for Max with scheduled clinic appointments twice a week. Monday he goes in for vitamin C and zometa infusions; Thursday just vitamin C. Oh, and don't forget blood draws and possible blood transfusions. There's a lot of in-the-car-time for Max and Nic every week.
Until next time...
4/19/2007
Pulitzer Prize photos featuring boy with neuroblastoma
Series of photos taken of Derek Maden and his mother Cyndie French during his 11-month battle against neuroblastoma. These photos won the photographer a Pulitzer Prize.
4/16/2007
All Around Update + Chemo VII
Wow... Max started his 7th round of chemo today - on time I'd like to add. The booster GCSF shots he received over the weekend pretty much cinched it for him. Max is feeling good and doesn’t have too many complaints right now. It’s great to see him with a little head of hair and displaying some energy. Not really what you’d expect from someone starting their 7th round of chemo. Max and I had a pretty good day at the hospital from 8:15 to 6:15 (Monday's are long!) but we're no worse for the wear.
Max just had a CTscan of his feet and knee last week as well as a whole body MIBG (bonescan). It doesn't appear that there are any new hot spots (from what my untrained eye could see on the MIBG). There is a singular spot on his spine still, but nothing lit up anywhere else. The CTscan results came back with nothing. Max had been complaining about pain on the bottom of his heels and in his knee/leg area. We have reason to believe that his heels were hurting because he's been way more active (running, playing, etc.) since he began his tube feedings. The cause of his knee pain could be the same, but could also be attributed to one or more of the medications he takes. It's great to have a doctor who's willing to react as fast we need. The emotions of having a child with this cancer can be overwhelming and the help we get from Max's oncologist is one less burden. Thanks, Dr. Roberts!
Max’s g-tube is apparently working. We checked in for chemo today and found that his weight has gone up to 17.1 kg from 15.9 kg when he had it inserted three weeks ago. "Woo-hoo," as Andy so eloquently put it via text message! We are also going to change his appetite enhancer back to Megace. The periactin (sp?) we tried didn’t do anything, so we’re giving the first one another go around. Started it tonight.
Max’s hair is partially grown in and looking very fuzzy – like a duckling. I may need to take him down to the shop for a little buzz to even it out. I did notice some hair on the pillow in clinic today, so maybe I'm jumping the gun on a haircut!
I took Hannah and Max down to the model train museum this weekend. Usually Andy is in charge of this outing, however he had just taken Max there the weekend before so I took the reins and we headed down to Balboa Park for Western Days at the train museum. The kids dressed up in their western finery. Max in his blue plaid Wrangler shirt with slick black leather vest, and Hannah in her pink suede, fringed vest and matching skirt. Don’t forget the hats! We ended up in the fun, loud train room - O gauge - where one of the gals, Amy, who works there noticed Max with his obvious ‘currently-in-chemo-treatment’ look and struck up a conversation with me. She introduced me to Jon Everett, O Gauge Club President, and they offered Max the opportunity to come down on a Tuesday and run the room (control the trains)! F-U-N! Max is stoked and can’t wait for the next Tuesday we can make it down there.
Max and Hannah's school has a KidsKorp group that meets after school once a month. This month they've decided to honor Max and Hannah. They're going to read a beautifully written book called "I'm a Superhero" by Daxton Wilde (and his mom). It's a four year olds' interpretation of fighting cancer. The kids at the meeting will be able to ask questions and Hannah will be there to help answer them. They will make orange bracelets for all the kids in school to wear on a special day just for Max. (date tbd) This will really be a great opportunity for Hannah to feel involved and important during this time where she's a "second-rate-sibling" (to steal a phrase from Syd Birrell).
If you haven't already checked over on Max's Kid Friendly Site, be sure to. Eight year old Cousin Alaina spearheaded a recycling effort at her school and made $600 for the playroom at the hospital. Wow, again, Miss Alaina, and thank you!
A huge thank you going out to everyone bringing over meals and to Kristen and Lori for organizing this project thebelskys@earthlink.net or lorigood@san.rr.com. Getting home tonight at 6:45 and being able to just sit down and eat is such a blessing. You people are great and we really, truly appreciate you! (PS - we're covered this week ;-) contact Kristen or Lori if you'd like to be included in their future emails.)
Goodnight!
Max just had a CTscan of his feet and knee last week as well as a whole body MIBG (bonescan). It doesn't appear that there are any new hot spots (from what my untrained eye could see on the MIBG). There is a singular spot on his spine still, but nothing lit up anywhere else. The CTscan results came back with nothing. Max had been complaining about pain on the bottom of his heels and in his knee/leg area. We have reason to believe that his heels were hurting because he's been way more active (running, playing, etc.) since he began his tube feedings. The cause of his knee pain could be the same, but could also be attributed to one or more of the medications he takes. It's great to have a doctor who's willing to react as fast we need. The emotions of having a child with this cancer can be overwhelming and the help we get from Max's oncologist is one less burden. Thanks, Dr. Roberts!
Max’s g-tube is apparently working. We checked in for chemo today and found that his weight has gone up to 17.1 kg from 15.9 kg when he had it inserted three weeks ago. "Woo-hoo," as Andy so eloquently put it via text message! We are also going to change his appetite enhancer back to Megace. The periactin (sp?) we tried didn’t do anything, so we’re giving the first one another go around. Started it tonight.
Max’s hair is partially grown in and looking very fuzzy – like a duckling. I may need to take him down to the shop for a little buzz to even it out. I did notice some hair on the pillow in clinic today, so maybe I'm jumping the gun on a haircut!
I took Hannah and Max down to the model train museum this weekend. Usually Andy is in charge of this outing, however he had just taken Max there the weekend before so I took the reins and we headed down to Balboa Park for Western Days at the train museum. The kids dressed up in their western finery. Max in his blue plaid Wrangler shirt with slick black leather vest, and Hannah in her pink suede, fringed vest and matching skirt. Don’t forget the hats! We ended up in the fun, loud train room - O gauge - where one of the gals, Amy, who works there noticed Max with his obvious ‘currently-in-chemo-treatment’ look and struck up a conversation with me. She introduced me to Jon Everett, O Gauge Club President, and they offered Max the opportunity to come down on a Tuesday and run the room (control the trains)! F-U-N! Max is stoked and can’t wait for the next Tuesday we can make it down there.
Max and Hannah's school has a KidsKorp group that meets after school once a month. This month they've decided to honor Max and Hannah. They're going to read a beautifully written book called "I'm a Superhero" by Daxton Wilde (and his mom). It's a four year olds' interpretation of fighting cancer. The kids at the meeting will be able to ask questions and Hannah will be there to help answer them. They will make orange bracelets for all the kids in school to wear on a special day just for Max. (date tbd) This will really be a great opportunity for Hannah to feel involved and important during this time where she's a "second-rate-sibling" (to steal a phrase from Syd Birrell).
If you haven't already checked over on Max's Kid Friendly Site, be sure to. Eight year old Cousin Alaina spearheaded a recycling effort at her school and made $600 for the playroom at the hospital. Wow, again, Miss Alaina, and thank you!
A huge thank you going out to everyone bringing over meals and to Kristen and Lori for organizing this project thebelskys@earthlink.net or lorigood@san.rr.com. Getting home tonight at 6:45 and being able to just sit down and eat is such a blessing. You people are great and we really, truly appreciate you! (PS - we're covered this week ;-) contact Kristen or Lori if you'd like to be included in their future emails.)
Goodnight!
4/11/2007
Three kids that could use some good thoughts thrown their way
Kendall http://www.caringbridge.org/ny/kendall/
Penelope http://www.caringbridge.org/ny/penelope/
Ryan www.caringbridge.org/visit/ryanmccormick
Also, both Max and Sam have been complaining of knee and leg pain off-and-on lately so they're both getting scanned ASAP to see what's going on. Max's scans are tomorrow (CT) and Friday (MIBG). Sam's are the following week I think, but I'm seeing his dad tonight and will find out definitively.
Penelope http://www.caringbridge.org/ny/penelope/
Ryan www.caringbridge.org/visit/ryanmccormick
Also, both Max and Sam have been complaining of knee and leg pain off-and-on lately so they're both getting scanned ASAP to see what's going on. Max's scans are tomorrow (CT) and Friday (MIBG). Sam's are the following week I think, but I'm seeing his dad tonight and will find out definitively.
4/07/2007
Top Ten Signs You’ve Been Fighting Neuroblastoma Too Long
Shout out to Margo for coming up with true comedy (that which is funny and makes a point that otherwise would be difficult to make without humor).
10. Every time your child gets a fever you hope it spikes to 101 or higher.
9. You’ve ceased to register the shocked faces at preschool when you off-handedly say, "Oh we can’t make it, we have chemo that day."
8. You’ve started inviting the nurses over to dinner
7. When you are at the ENT with your other child talking about removing his tonsils and the doctors says, "It’s surgery you know, it requires general anesthesia," you involuntarily go "Pfff."
6.When your child is diagnosed with pneumonia, you hope it’s the viral kind on the off chance pneumonia is an oncolytic virus that kills neuroblastoma cells
5. You can spell "pneumonia" and "oncolytic virus"
4. You don’t even flinch at throw up at a birthday party and help clean it up even when it’s somebody else’s child.
3. You can sleep through a stem cell transplant (stole that from the Londons)
2. When your child says something hurts you hope he or she has broken a limb somehow.
1. You have a hard time drumming up sympathy for Elizabeth Edwards and get ticked at all the cheery articles on how great it is to live with cancer these days.
10. Every time your child gets a fever you hope it spikes to 101 or higher.
9. You’ve ceased to register the shocked faces at preschool when you off-handedly say, "Oh we can’t make it, we have chemo that day."
8. You’ve started inviting the nurses over to dinner
7. When you are at the ENT with your other child talking about removing his tonsils and the doctors says, "It’s surgery you know, it requires general anesthesia," you involuntarily go "Pfff."
6.When your child is diagnosed with pneumonia, you hope it’s the viral kind on the off chance pneumonia is an oncolytic virus that kills neuroblastoma cells
5. You can spell "pneumonia" and "oncolytic virus"
4. You don’t even flinch at throw up at a birthday party and help clean it up even when it’s somebody else’s child.
3. You can sleep through a stem cell transplant (stole that from the Londons)
2. When your child says something hurts you hope he or she has broken a limb somehow.
1. You have a hard time drumming up sympathy for Elizabeth Edwards and get ticked at all the cheery articles on how great it is to live with cancer these days.
4/03/2007
General Grevious Gets Gushed
Tuesday Morning
7:00am - Max is a trooper. He's still not eating much but we'll pick up a prescription for a new appetite enhancer this afternoon at clinic. Breakfast was a flop, however, he powered down almost all of his pills (keep this in mind).
9:00am - Nic has an appointment with the peditrician. While I'm checking in I get a phone call from Hannah & Max's school. Its the school nurse: "Hi, Mrs. Mikulak. Max just threw up in class. He's here with me in the nurses office." Ok, um... I can be there in about 30 minutes. Is he feeling okay now? "Yes, he seems to be in good spirits." Ok, I'll be there as soon as I can.
So I get through Nic's appointment: he's a little anemic which could be caused by a virus or ??? And it appears he has a hernia in his diaper area if you know what I mean... So I just need to schedule an appointment with the surgeon, Dr. Hilfiker, who happens to be Max's surgeon, too. (I do not have time for two sick kids. What are these children thinking?)
Back to Max: we get to school and Max is reading happily along with the nurse through a big book of birds. He's happy as a clam and ready to go back to class. I excuse myself and trot down the hall to speak with his teacher, Ms. Weitz, to find out what happened: Today was Max's turn for the Secret Sack (show and tell). He brought his brand new Star Wars Lego General Grevious figure with four light sabers and the empty box showing the cool Lego ship that he has at home. Apparently he got a little excited about showing his new toy and nervious about talking in front of the class and promptly threw up IN the lego box. Ms. Weitz found herself impressed with his throw-up know-how. Mommy quickly remembers that he ate nothing this morning except a handful of pills. Hmm...
The good news is that he went back to class and felt fine the rest of the day.
7:00am - Max is a trooper. He's still not eating much but we'll pick up a prescription for a new appetite enhancer this afternoon at clinic. Breakfast was a flop, however, he powered down almost all of his pills (keep this in mind).
9:00am - Nic has an appointment with the peditrician. While I'm checking in I get a phone call from Hannah & Max's school. Its the school nurse: "Hi, Mrs. Mikulak. Max just threw up in class. He's here with me in the nurses office." Ok, um... I can be there in about 30 minutes. Is he feeling okay now? "Yes, he seems to be in good spirits." Ok, I'll be there as soon as I can.
So I get through Nic's appointment: he's a little anemic which could be caused by a virus or ??? And it appears he has a hernia in his diaper area if you know what I mean... So I just need to schedule an appointment with the surgeon, Dr. Hilfiker, who happens to be Max's surgeon, too. (I do not have time for two sick kids. What are these children thinking?)
Back to Max: we get to school and Max is reading happily along with the nurse through a big book of birds. He's happy as a clam and ready to go back to class. I excuse myself and trot down the hall to speak with his teacher, Ms. Weitz, to find out what happened: Today was Max's turn for the Secret Sack (show and tell). He brought his brand new Star Wars Lego General Grevious figure with four light sabers and the empty box showing the cool Lego ship that he has at home. Apparently he got a little excited about showing his new toy and nervious about talking in front of the class and promptly threw up IN the lego box. Ms. Weitz found herself impressed with his throw-up know-how. Mommy quickly remembers that he ate nothing this morning except a handful of pills. Hmm...
The good news is that he went back to class and felt fine the rest of the day.
3/30/2007
Chemo VI
Max just completed his sixth round of cyclo/topo chemo. At this point the mix is working and we will stay this course until Max is again in remission or the NB cells become resistant to the current treatment. At which point a change would need to be made... however, Max is not at this point and is responding nicely.
Now that he is off-study for the nifurtimox (still taking these) we have added vitamin C and zometa (a bisphosphonate bone strengthener) to his cocktail. His first infusion will be Tuesday. The preliminary studies from Dr. Sholler's lab show that nb cells responded even better to the nifurtimox + vit C. The bone strengthener just seems like an obvious choice due to the fact that the cancer is attacking his bones. There is a study on this somewhere.
Back to Max: He was very tired this week and actually took a nap today in clinic during his post chemo hydration. His appetite was really low. Today he barely ate at all. He has been getting his overnight nutrition, but it's vital that he keeps eating by mouth, too. I'm trying to figure out what the cause is: he is post surgery on his g-tube, it's chemo week, we're feeding him over night. I dunno. I've decided not to call his overnight feedings "feedings" anymore. I don't want him to think that's his new way of eating. We'll figure it out.
Signing out for tonight with a big yawn. Melis
Now that he is off-study for the nifurtimox (still taking these) we have added vitamin C and zometa (a bisphosphonate bone strengthener) to his cocktail. His first infusion will be Tuesday. The preliminary studies from Dr. Sholler's lab show that nb cells responded even better to the nifurtimox + vit C. The bone strengthener just seems like an obvious choice due to the fact that the cancer is attacking his bones. There is a study on this somewhere.
Back to Max: He was very tired this week and actually took a nap today in clinic during his post chemo hydration. His appetite was really low. Today he barely ate at all. He has been getting his overnight nutrition, but it's vital that he keeps eating by mouth, too. I'm trying to figure out what the cause is: he is post surgery on his g-tube, it's chemo week, we're feeding him over night. I dunno. I've decided not to call his overnight feedings "feedings" anymore. I don't want him to think that's his new way of eating. We'll figure it out.
Signing out for tonight with a big yawn. Melis
Butterflies
Syd lost his son James to neuroblastoma, and below offers words of hope for the parents who's kids have probably reached the end of their fight with this evil disease. His message below is to another NB parent who wrote today to Penelope's parents, expressing his grief at Penelope's state.
Henry,
Five years after losing my son to this monster disease I find that dealing with the trauma of watching his suffering is as hard or harder than the loss itself. It is because I do not want other parents to travel this road that I pour heart and soul into the James Fund. But I can say from my experiencethat neuroblastoma cannot defeat the spirit of our children, and it cannot match the strength of the love that surrounds the NB children. I would add that contrary to my thoughts at the time, it is possible to find life after NB, and it is possible to be happy, fulfilled, and to enjoy and cherish my surviving children.I would go further, and say that although I instinctively label myself a failure for not saving my son, I perhaps have been able to contribute something to making this world a better place, if even only half the nice things people say to me are to be believed Now while I was in the place that John and Aimee and others find themselves today, and in the tremendously difficult time that followed, it bothered me ferociously that I did not love my other children as much as I loved James, and that my relationship with them was of a much milder quality. Well wake up Syd, what do you expect if you spend months and years of 24/7attention on a child, dodging the bullets in the trenches, living life's worst fear, and then try to create that same relationship with the "normal" siblings. One of the gifts of childhood cancer is that you get to know a child intimately, it is a relationship that normal parents can never experience. The loss is the greater, but the legacy can help you change this troubled world.
So I am writing all these words as I wait for the next performane of my 14 year old daughter Rebecca at a dance competition Rebecca was pretty cut up as a nine year old, grieving for her eight year old brother. Now she is a confident, cheerful, loving and accomplished young lady. And as I watched her dance, of course I cried quietly in the darkened auditorium, as dads do, but not just for the reasons normal dads do. I cried because she has managed to build a beautiful life despite years of being a second class sibling, despite the lack of stable parenting, despite the enshrining of her brother throught the James Fund and my book, despite the ongoing media fuss about her brother. I cried most of all because I thought of Penelope London, whom I saw smiling and laughing and dancing just three weeks ago, and who loves to run and leap and catch butterflies. What can be done with all our tears as we witness the horror of neuroblastoma? I am just a dad, I have no professional qualifications to comment on such hard things, but it seems to me to boil down the choices. Am I going to let tragedy destroy my family? Am I going to let neuroblatoma fill my life with its fear and horror? It was my son who said "Ya can't let cancer ruin your day" and so we put those words on his tombstone. And every day when as usual I don't feel like getting out of bed, because, remember, I'm a failure, then I remind myself that ya can't let cancer ruin your day, let alone your life, and that it is time to choose to get out of bed, and nurture my daughter, so she can dance, and my son, so that he can run, and my wife, so that she can sing.
My best wishes to you Henry, as you slay your dragon.
Syd. Wife of Pam, father of
Rebecca, James and Ben.
www.jamesfund.com
3/29/2007
Penelope
Darling Penelope London (http://www.caringbridge.org/ny/penelope/index.htm) has gone into hospice at home. Please read her father's post below from last night, go hug your kids if you have them, and then perhaps decide to do something to help in the fight against this absolutely evil disease that strikes those who are least able to defend themselves against it. Penelope can't appear on TV with her husband and presidential candidate to talk about her disease. She can't stand at the podium in the press room of the White House and share her story. Her battle is invisible to most of us, but it is the most courageous battle of all, and it deserves better. There is not one drug that has been specifically developed for pediatric cancer. All drugs used to treat neuroblastoma are used "off-label", unlike higher-profile cancers like breast, lung and prostate which attract the research community's and pharmaceutical company's attention, focus and effort.
Thursday, March 29, 2007 7:07 PM CDT
I am writing this entry so that I remember it in the future. I am hoping it will help Catherine and me and our family one day....
Penelope is doing very, very poorly. Tumors are protruding from her skull, eye socket, spine, abdomen and are in every bone of her body. We know her time with us is so very short. She is in extreme pain, her vision is impaired and we have her on pain medication around the clock.
I was just lying in bed with her, holding her in my arms and I told her "I know you feel very yucky right now. Daddy wishes he could feel yucky instead of you". Penelope shook her head and said to me "I want nobody to feel yucky". Her eyes were closed and she went back to sleep. I squeezed her a little tighter and with tears coming down my face I said "thank you so much for saying that Penelope". She wants us to be happy. She doesnt want us to suffer. She is an angel as she seeks to keep her family from pain. We are so amazingly blessed to know her, to have her as a member of our family. We just want her to be as comfortable as possible in the period to come. I pray she is spared more suffering. Catherine and I tell her soon she will have no more pain and she will be chasing butterflies and laughing and singing. We love you so much Penelope.
Please keep her in your prayers.
Catherine and John
3/25/2007
Surgery photos
Mr Skinny arms doing homework.
Port... Max's second "plug" on his body.
Cute photo of Nic just had to include... tonight, blowing bubbles as the fog rolls in and the temp drops.
3/24/2007
G-Tube Surgery Complete
Thursday Day 0 Post-op: G-tube surgery went well. However…
- Max woke up ready for a popcycle in post-op, as is his routine, just to discover that he would be unable to eat anything for 24 hours post surgery (add to that: he hadn’t eaten for 18 hours already)! Mommy learned this info at the same time and was immediately horrified at the prospect of being in a room with Max over the next 24 hours. It turned out to be just as exciting as I ever could’ve imagined. Not only was he hungry but very sore from surgery.
- For some unknown reason the anesthesiologist decided to give Max an arm IV instead of utilizing his port-a-cathe while he was under, which meant we had to access his port when he was awake, hungry, tired, and sore later that evening. It was a joy, I tell you. Mommy had to hold his arms down so the nurse could pull the tape off his chest. While we did this he screamed and screamed and cried at us, “I CAN DO IT! I CAN DO IT!” which then changed over to “BAD MOMMY! BAD MOMMY!” looking me straight in the eye while I tried my damnedest not to cry. It was over in a minute that seemed like forever. It sucked.
Friday Day 1 Post-op: This morning he woke bright and early already asking for food.
- His orders to ahead with g-tube nutrition starting with pedialite were in by 8:00am but, of course, it took until 11:30 to make that happen. What a pain in the ass. My friggin’ kid is starving and in pain… hello?
- Meanwhile back at the ranch… I find out that we will not go home today because they have to make sure his stomach is going to tolerate food okay following the surgery on his stomach (makes sense, but no one ever mentioned that to me. I think I heard “one night stay”.) In fact, we’re probably going to be here until Sunday, because we also have to learn how to use the g-tube properly and care for it and the surgical site.
- At 1:00pm Dr. Roberts came in and told Max he could start eating food by mouth. My sister, Randee, was here with Max and got to be the food-hero. He ate several bites of: Pirates Bootie, cheerio’s, bagel, sourdough bread, blueberry muffin, pretzels, choc-chip cookie and ½ a banana. Then he ate some chicken noodle soup and half a cup o’ mashed potatoes for dinner.
- Can we talk about a food-induced attitude adjustment? Even better than his pain-meds and morphine. He was smiling and humming all afternoon!
- Tonight they started running the kids’ formula at a low rate through his g-tube. We’ll increase the rate at 6 hour intervals to make sure he’s digesting it okay. I learned how to set the pump up this evening for the all-night feeding. At midnight I learned how to check his stomach for ‘residual’ before pumping more nutrients in using a giant syringe, although I'm not sure when I would actually utilize this knowledge. It’s a little gross but I imagine I’ll be over it midweek. The prospect of Max putting on some pounds outweighs any and all ickiness.
Saturday Day 2 Post-op: Ahhh, finally some good news.
- We had a great, on-the-ball nurse today, Sarah, who answered many a’ question and helped Max get all his ducks lined up for check out today! Yes, as of 2:30pm he was home eating kraft mac & cheese while building his new lego ambulance that Hannah & Daddy picked out for him.
- HomeCare came by this evening and helped us set up an IV pole in Max's room and went over with me again how to set the pump for nighttime feedings. Wow, we have durable medical equipment in our home...!
- He's going to get about 300ml of a kid protein drink while he sleeps tonight. We'll boost the dose as he adjusts up to 750ml per night probably by the end of next week.
Sunday will be a day off for our whole family. What a relief. Monday finds us back on schedule with Max's next round of chemo (this would be a good week to leave some soup at our front door!). The action never stops here at the Mikulak household. Sheesh.
In a nutshell: the g-tube surgery and recovery was far more laborious than we had expected. Now that I see the thing on/in Max (photos posted soon for your viewing pleasure) I see why and I am disappointed that we weren't given better info to then prepare Max for what lay ahead.
3/22/2007
Max update
Visited Max tonight after work. Hannah was with my dad and Nic was with Melis' parents for the night. So here's the scoop. His 'mickey' is right above his belly button. Its about the size of a bottle cap and plastic. There's a removable lid which just hangs - sorta like a gas cap - when removed. You can then attach different types of tubes, some for getting fluid via a pump overnight, some for a quick 'bolus' of liquid. We can even give him any meds that he won't take orally (though that's not really a problem). Post-surgery, he still can't eat until tomorrow and so he's very sad and cranky, as we all would be! Talking with Melis tonight a little bit ago, he's in some pain from the procedure and the nurses are a bit slow tonight in getting his IV removed and his port accessed so that he can get some additional pain meds and zonk out for the night. I'm sure tomorrow will be a better day for him.
Driving from work over to the hospital, another NB dad called me and asked about Max. I told him what I knew and he commented on how this is so unique to cancer parents. Something like this would probably be a HUGE ordeal in other households but its all part of the game - cost vs. benefit - of treating cancer. We know our kids are stronger and better for having this experience, tough as it is to imagine wishing this on anyone (which I don't).
Here's Max sleeping peacefully while I sit with him and Melis grabs some lovely CHSD food.
Driving from work over to the hospital, another NB dad called me and asked about Max. I told him what I knew and he commented on how this is so unique to cancer parents. Something like this would probably be a HUGE ordeal in other households but its all part of the game - cost vs. benefit - of treating cancer. We know our kids are stronger and better for having this experience, tough as it is to imagine wishing this on anyone (which I don't).
Here's Max sleeping peacefully while I sit with him and Melis grabs some lovely CHSD food.
Out of surgery
He's awake. But not allowed to eat today. Not good.
He woke up to a new Lego set that he's been craving. Very good.
Now let's hope we can start putting some muscle back on the boy. Hopefully will have some pics to post later... I'm curious myself what the g-tube actually looks like.
He woke up to a new Lego set that he's been craving. Very good.
Now let's hope we can start putting some muscle back on the boy. Hopefully will have some pics to post later... I'm curious myself what the g-tube actually looks like.
Max goes into surgery today for g-tube
Max will be going in around 11:30am this morning to have his g-tube insertion procedure. Shouldn't be a long one which is good. We held back from telling him until last night and he was actually happy about it, as we had been hinting (as part of our failed attempt to get him to eat more) that he might have to have a tube put up his nose. Hopefully this does the trick. His appetite has improved somewhat but we're committed to doing this anyway until we can see some appreciable weight gain in him. Still on track to start chemo+zometa+nifurtimox+ascorbate on Monday.
3/19/2007
No Chemo Today + Getting a G-Tube
Max was scheduled to start up chemo today, but his ANC (infection fighting part of his blood) is too low. So we have to wait and try again next week.
I just hate when this happens. It used to bug me because I had the whole week figured out with Hannah & Nic and had to redo it for the following week. Now I'm just pissed and worried because it means those damn NB cells have more opportunity to grow and invade. (OK, got that off my chest.)
So what's a G-Tube, right? It's a feeding tube that we're going to have surgically implanted in Max's tummy to feed him while he sleeps at night. His eating habits are so poor. He actually lost a pound last week. He is so painfully skinny - almost 6 yrs old and under 36lbs. He has no energy and he just wants to rest all the time. We'll be able to pump lots of calories into him every night, plug the hole, and send him off to school. I'm sure it's more complicated than that but the other parents say it's the way to go. So, sign us up.
We're looking at a possible surgery for the g-tube on Thursday but may have to wait until April 1 for several scheduling reasons.
I just hate when this happens. It used to bug me because I had the whole week figured out with Hannah & Nic and had to redo it for the following week. Now I'm just pissed and worried because it means those damn NB cells have more opportunity to grow and invade. (OK, got that off my chest.)
So what's a G-Tube, right? It's a feeding tube that we're going to have surgically implanted in Max's tummy to feed him while he sleeps at night. His eating habits are so poor. He actually lost a pound last week. He is so painfully skinny - almost 6 yrs old and under 36lbs. He has no energy and he just wants to rest all the time. We'll be able to pump lots of calories into him every night, plug the hole, and send him off to school. I'm sure it's more complicated than that but the other parents say it's the way to go. So, sign us up.
We're looking at a possible surgery for the g-tube on Thursday but may have to wait until April 1 for several scheduling reasons.
3/18/2007
Max - eating issues
Tomorrow we're consulting with our onc about getting some artificial help for Max's nutritional issues. The darn kid just isn't eating. Last week was tough. He had the flu but by the time we were home from Vermont he was feeling better. And we hoped that with the flu gone and being off the Nifurtimox for the better part of the week, that his appetite would come back. This morning (Sunday) he woke up and asked for french toast. Hurrary! The appetite is back. Max ate a whole piece of french toast (yes, sounds not so huge but considering what he hasn't had to eat in the past week, it was a monster-size meal for us/him). Too bad though, that was the last thing he would eat all day.
At dinner, Melissa and I leaned on him to eat two chicken nuggets and we were rewarded for our tenacity with an-almost-Linda-Blair-like puke all over himself and the kitchen table. We're 99% positive it's all mental at this point, as there is likely no stomach/GI issues that would make him lose it like that. So, while I feel horrible for having pushed Max to eat this evening, only to make him throw up (and he was bawling the whole time so clearly upset), for me at least it sealed the need to get some nutrition and calories into him on a regular basis via artificial means. I've read some good things other NB parents have said about the g-tube, or gastrointestinal tube, that allows them to add 1,000 or more calories to their kids while sleeping or inactive. That would be huge if we could do that. On Thursday Max weighed in at 15.8 kg.... just about 30 lbs. Not good.
At dinner, Melissa and I leaned on him to eat two chicken nuggets and we were rewarded for our tenacity with an-almost-Linda-Blair-like puke all over himself and the kitchen table. We're 99% positive it's all mental at this point, as there is likely no stomach/GI issues that would make him lose it like that. So, while I feel horrible for having pushed Max to eat this evening, only to make him throw up (and he was bawling the whole time so clearly upset), for me at least it sealed the need to get some nutrition and calories into him on a regular basis via artificial means. I've read some good things other NB parents have said about the g-tube, or gastrointestinal tube, that allows them to add 1,000 or more calories to their kids while sleeping or inactive. That would be huge if we could do that. On Thursday Max weighed in at 15.8 kg.... just about 30 lbs. Not good.
3/17/2007
Last Trip to Vermont
We're back in Vermont for the end of Max's Nifurtimox trial. We left on Wednesday (3/14) and are coming home today, 3/17. "We" being Melissa, me, Hannah and Max. We left Nic at home with Melis' parents - word was that he was spotted walking around their house clutching a photo of our family kissing it. :(
Last night and right now, it's snowing in Burlington - a Nor'easter. Our flight at 8am today was cancelled by noon yesterday, but we're re-booked on a 2pm flight today through Dulles (no directs to SD obviously) that we hope gets us home around 830/9pm SD time. Before we leave today I'll take Max out in the parking lot and bust through some drifts (we rented an Xterra as Max likes "Jeeps" and similar).
Yesterday, we attended a conference - Developments in Neuroblastoma - while the kids were babysat at RMH Burlington. It was a fabulous conference organized and hosted by the wonderful Dr. Giselle Sholler who cares so much about our NB kids. Besides some of the big names in NB research, Drs. Maris, Matthay and Modak, there were other UVM researchers presenting some fascinating work in the areas of cancer stem-cells, genetic origins of NB and more. While much of the presentations were so science-heavy Melis and myself couldn't grasp the meaning of what was being presented, we still felt good being there, along with some of the other parents who attended, in order to represent our kids and the ultimate reason everyone was there - to find a cure for this damned disease.
The trip out here was pretty hectic, to say the least. First, we had a 6:20am departure from SAN on Wednesday. So it was a 4am start for us that day. Of course, that Monday Max caught the flu bug that Nic was just getting over (as we dropped him off at Nana & Tata's house that night for 4 nights). So the next day while traveling, Max was wiped out completely. Sleeping most of the time on the flight from SAN to ORD, he threw-up as we were running to catch our connecting flight to BVT. Oh, he also has bone pain, in addition to just being weak from not eating for days and the flu, and so I was carrying him as he started to puke. Luckily we were right next to a men's restroom and so we didn't make too much of a mess ;) Poor guy! I was ready to kill anyone who even said anything negative as I helped him finish his sickness and clean up. Finally, we got to our gate (as usual, United sends the WRONG gate number through their texting service to your mobile phone) in the other terminal just in time to get going.
One of the other great things about this trip was meeting Syd Birrell and family. Syd's son James passed away from Neuroblastoma in 2001. You can visit their website here: http://www.jamesfund.ca/. Syd wrote a book titled after one of James' quotes, "Ya Can't Let Cancer Ruin Your Day." During the course of James' treatment, Syd created the James Fund for Neuroblastoma research. He was able to enlist Tom Hanks to lend access and awareness to the James Fund cause and so far Syd has raised more than $2 million dollars for NB research in Canada at Sick Kids hospital in Toronto. Neil Hutchison, father of Sam and fellow San Diegan, and myself will be tapping Syd's brain for ideas to help do the same here in the US.
Last night and right now, it's snowing in Burlington - a Nor'easter. Our flight at 8am today was cancelled by noon yesterday, but we're re-booked on a 2pm flight today through Dulles (no directs to SD obviously) that we hope gets us home around 830/9pm SD time. Before we leave today I'll take Max out in the parking lot and bust through some drifts (we rented an Xterra as Max likes "Jeeps" and similar).
Yesterday, we attended a conference - Developments in Neuroblastoma - while the kids were babysat at RMH Burlington. It was a fabulous conference organized and hosted by the wonderful Dr. Giselle Sholler who cares so much about our NB kids. Besides some of the big names in NB research, Drs. Maris, Matthay and Modak, there were other UVM researchers presenting some fascinating work in the areas of cancer stem-cells, genetic origins of NB and more. While much of the presentations were so science-heavy Melis and myself couldn't grasp the meaning of what was being presented, we still felt good being there, along with some of the other parents who attended, in order to represent our kids and the ultimate reason everyone was there - to find a cure for this damned disease.
The trip out here was pretty hectic, to say the least. First, we had a 6:20am departure from SAN on Wednesday. So it was a 4am start for us that day. Of course, that Monday Max caught the flu bug that Nic was just getting over (as we dropped him off at Nana & Tata's house that night for 4 nights). So the next day while traveling, Max was wiped out completely. Sleeping most of the time on the flight from SAN to ORD, he threw-up as we were running to catch our connecting flight to BVT. Oh, he also has bone pain, in addition to just being weak from not eating for days and the flu, and so I was carrying him as he started to puke. Luckily we were right next to a men's restroom and so we didn't make too much of a mess ;) Poor guy! I was ready to kill anyone who even said anything negative as I helped him finish his sickness and clean up. Finally, we got to our gate (as usual, United sends the WRONG gate number through their texting service to your mobile phone) in the other terminal just in time to get going.
One of the other great things about this trip was meeting Syd Birrell and family. Syd's son James passed away from Neuroblastoma in 2001. You can visit their website here: http://www.jamesfund.ca/. Syd wrote a book titled after one of James' quotes, "Ya Can't Let Cancer Ruin Your Day." During the course of James' treatment, Syd created the James Fund for Neuroblastoma research. He was able to enlist Tom Hanks to lend access and awareness to the James Fund cause and so far Syd has raised more than $2 million dollars for NB research in Canada at Sick Kids hospital in Toronto. Neil Hutchison, father of Sam and fellow San Diegan, and myself will be tapping Syd's brain for ideas to help do the same here in the US.
3/10/2007
"Max eats two cheeseburgers at McDonalds"
Max's proud parents were seen with tears in their eyes and joyful thoughts of how this could be the turning point in finding something that the boy will eat. "We've been pushing Max to eat... eat anything. We'll drive you around the world in search of the perfect food." Today, they settle for Mickey-D's.
The Results Are In!
Max's MRI and MIBG (bone) scan went well this week. Dr. Roberts call with the results and this is what we know:
- MRI – shows decreased enhancement all along spine. It still shows signs of enhancement on two biggest points on spine (first two spots to show up originally) and some enhancement here and there.
- MIBG – only shows uptake on one spot along the spine that correlates with MRI reading.
- How do these two correlate? GCSF can cause the MRI to look like there is activity similar to what is being seen (activity here and there caused by the GCSF in the bone marrow creating white blood cell development). Also, the one spot on the MIBG could be the only “live” cancer cells with the MRI showing the live and dead tissue along with the GCSF reaction.
- The consensus is that the disease is going away at this point.
- Treatment should stay the way it is as it appears to be working. Continue on current chemo. Adding bisphosphonates, calcium, Vit D and possibly Vit C infusions. All to start 3/19.
This is pretty much what I was expecting and we hope that the current cocktail of drugs continues to work on these cancer cells. The fight is long from over.
Our newest issue is Max eating - or not eating I should say. Had a long discussion with his oncologist about this, too. Here's the scoop:
- Max is down to 16.3 kilos (35.86lbs) from 17.2 (37.84). If we can’t find a way to get Max to eat and he loses one more kilo Dr. Roberts suggests that we put him on IV nutrition for 2-3 weeks everyday. This will require daily clinic visits for up to 12 hours each day. This, however, is not a long term solution.
- We’re still working on the Megace: increased dosage from 4.5ml/day to 6.0ml/day with no results thus far.
- This week Max started antacids to counteract the possibility that the nifurtimox is contributing to his appetite problems. We pondered the possibility of taking Max off the nifurtimox for a week to see what would happen, however Dr. Roberts does not want us to do that, but wait to see if the antacid does work over the next 2 weeks.
- If results are still piss-poor we’ll move Max from Megace to a different appetite medicine to see if that works.
2/27/2007
Upcoming events
Coming up:
- March 1 Thu - Clinic Appt (I'm not making any predictions about transfusions!)
- March 5 Mon - Clinic Appt
- March 7,8,9 Wed Thu Fri - MIBG injection, MRI & MIBG scans to see what's happening inside Max's body.
- Mar 12 Mon - Clinic Appt
- Mar 14-17 Wed-Sat - Trip to Burlington VT for end of Nifurtimox Study and NB Conference
- Mar 19 Mon - Chemo VI slated to start
2/26/2007
You are incorrect, sir!
Okay, so I was way off in my transfusion prediction! Max didn't need anything today at clinic... his reds were good and his platelets were way up there. Last nights' shot didn't even leave a bruise. He was a little moody this morning. Nothing like yesterday. He was even back in school by 10am hanging with his entourage.
I guess everybody has a bad day. Yesterday was Max's. Today was definitely better. We'll take it!
I guess everybody has a bad day. Yesterday was Max's. Today was definitely better. We'll take it!
2/25/2007
Bummer Weekend for Max
We're 6 days post chemo and Max's blood counts have plummeted. His reds were only 8.5 on Thursday with every indication that they'd be dropping over the weekend. (For reference: transfusions take place for reds at 7.5-8.0) His platelets are also really low again with bruising on his legs where I have to give him his GCSF shots.
The poor boy was feeling low yesterday, Saturday, but today was just about the lowest I've seen him - everything made him cry and we were doing our darnedest to keep him happy. He spent the whole day at home, by choice, curled up on the couch in his jammies with his blanket. We watched some TV and read a book about pirates. He didn't even feel like playing his Star Wars video game! A little later in the afternoon he ventured out to the dining room to play with his legos for a while. He had a good breakfast and lunch but was so pooped by dinner that he just wanted to go to bed... 5:30pm.
I'm looking forward to getting him to clinic tomorrow and filling up his tank. I expect him to be a mess in the morning and a chatty-cathy on the way home.
Auch... it's been a tiring day.
The poor boy was feeling low yesterday, Saturday, but today was just about the lowest I've seen him - everything made him cry and we were doing our darnedest to keep him happy. He spent the whole day at home, by choice, curled up on the couch in his jammies with his blanket. We watched some TV and read a book about pirates. He didn't even feel like playing his Star Wars video game! A little later in the afternoon he ventured out to the dining room to play with his legos for a while. He had a good breakfast and lunch but was so pooped by dinner that he just wanted to go to bed... 5:30pm.
I'm looking forward to getting him to clinic tomorrow and filling up his tank. I expect him to be a mess in the morning and a chatty-cathy on the way home.
Auch... it's been a tiring day.
2/15/2007
Chemo V Started
Just a quick note while I'm home collecting stuff for an overnight stay at the hospital:
Max's counts were great today and he's starting his 5th round of chemo. Unfortunately (for us parents) Max has to be inpatient. Starting on a Thursday means he'll need to receive the chemo over the weekend and the outpatient clinic is not open on the weekend. In the past when this has happened we've been able to come to the inpatient ward daily, however, this time the ward is probably going to be full: no bed=no treatment. So to make sure Max can get his chemo everyday with no delay he has to stay for five days in the ward. I would like to point out that Max is very happy with this situation. Inpatient kids get playroom access!
We could have waited until next week to start chemo, but then we'd be dealing with the uncertainty that his blood counts might drop again... further delaying chemo.
Max's counts were great today and he's starting his 5th round of chemo. Unfortunately (for us parents) Max has to be inpatient. Starting on a Thursday means he'll need to receive the chemo over the weekend and the outpatient clinic is not open on the weekend. In the past when this has happened we've been able to come to the inpatient ward daily, however, this time the ward is probably going to be full: no bed=no treatment. So to make sure Max can get his chemo everyday with no delay he has to stay for five days in the ward. I would like to point out that Max is very happy with this situation. Inpatient kids get playroom access!
We could have waited until next week to start chemo, but then we'd be dealing with the uncertainty that his blood counts might drop again... further delaying chemo.
2/12/2007
No Chemo Today
UGH! I thought this would be the case today...
Max's blood counts didn't recover enough to start chemo today. His platelets are still low (even after the transfusion last week) and his ANC (combined blood count stuff) was low also. We're going to give him one GCSF shot tonight to boost his white cells and see if that doesn't lift the ANC. The platelets are on their way up so we'll just cross our fingers that they increase enough to get started on Thursday.
On the bright side, look at Max on Sunday night. Eating crab, smiling. So while the news is sometimes grim-sounding, the reality is that Max has an amazing spirit!
Max's blood counts didn't recover enough to start chemo today. His platelets are still low (even after the transfusion last week) and his ANC (combined blood count stuff) was low also. We're going to give him one GCSF shot tonight to boost his white cells and see if that doesn't lift the ANC. The platelets are on their way up so we'll just cross our fingers that they increase enough to get started on Thursday.
On the bright side, look at Max on Sunday night. Eating crab, smiling. So while the news is sometimes grim-sounding, the reality is that Max has an amazing spirit!
2/08/2007
Week of Feb 5 and the Week Ahead...
This week Max visited the clinic on Tuesday for a much need platelet transfusion. When your platelets get low you bruise really easily. His every night shot in the leg which is as gentle as a shot can be and normally is invisible, looked like I had shot him in both thighs with an elephant tranquilizer.
He'll have his CBCs drawn Friday. I don't expect he needs anything, so we'll get him right back to school for the rest of the day. Of course I'm hoping his counts are really good and don't drop because...
Next week, Feb 12-16, Max starts his 5th round of chemo and we need his blood counts to be A-OK in order for that to happen. (Yeah, I feel like we were just there last week, too!)
Oh no! Is Max going to miss his school Valentine's Day party. No... I already spoke with his oncologist who is sensitive to the kids' needs. He said we could hydrate in clinic before the party then head back down for chemo after. It'll make it a late day at the clinic - but well worth it. And Max did such a nice job writing names on all his cards and making his groovy-animal print box that he would be heart-broken if he missed the fun. Look for pictures of the party on Max's site next week!
He'll have his CBCs drawn Friday. I don't expect he needs anything, so we'll get him right back to school for the rest of the day. Of course I'm hoping his counts are really good and don't drop because...
Next week, Feb 12-16, Max starts his 5th round of chemo and we need his blood counts to be A-OK in order for that to happen. (Yeah, I feel like we were just there last week, too!)
Oh no! Is Max going to miss his school Valentine's Day party. No... I already spoke with his oncologist who is sensitive to the kids' needs. He said we could hydrate in clinic before the party then head back down for chemo after. It'll make it a late day at the clinic - but well worth it. And Max did such a nice job writing names on all his cards and making his groovy-animal print box that he would be heart-broken if he missed the fun. Look for pictures of the party on Max's site next week!
2/03/2007
Nifurtimox Update
Max has been taking the nifurtimox now for about 8 weeks; started Dec 11, 2006. I think he was the second kid on trial. Dose level: ?. It's not a blind study, but the first phase includes increasing dosage every 3-5 patients or something. Max is on the lowest dose which I think is 120 (that's what the pill says on it). He's had two chemo rounds during that time (4 total since he recurred). We have not noticed any side effects from the nifurt and his weekly nuerological examines are fine. He has and mri, mibg and bone marrow aspiration before each chemo for study purposes. Max has also just finished 12 days of radiation.
So far, the scans haven't been able to tell us anything undeniably positive except that the cancer is not growing. They're being done so frequently and at times that are not normally associated with the standard protocol, that the doctors aren't sure how to interpret the data that they're getting (there's nothing to compare it to). The bone marrow stain has been negative the last two times which is great. The mibg doesn't show any change. The mri shows all kinds of activity up and down Max's spine, however, it could be showing cells exploding not cell growth.
Max can't be on any thing else while on the trial. As soon as the trial is over (March) were adding Vit C, Calcium + Vit D, possibly bisphosphonate, and we're looking into a couple other things that John London & Neil Hutcinson just mentioned on acor (artemisinin, calcium butyrate).
From what I understand, the nifurtimox trial runs with topotecan/cytoxin chemo drugs. That's the beauty of this trial - Dr. Sholler is trying to find new means of helping our kids without asking us to stop using methods already in effect that have been proven to do something (hence the topo/cytox + nifurtimox).
Dr. Sholler is really trying to help us help our kids. She's in the right mind set, looking at the here and now, knowing that this is a very aggressive and elusive cancer. She's knows we can't ignore the obvious treatments like chemo just to try a new drug for some study data that may be useful 20 years from now.
My husband and I will be at the NB conference in VT in March. We hope to meet a lot of other NB parents and specialists there as well as at the conference in Chicago this summer.
So far, the scans haven't been able to tell us anything undeniably positive except that the cancer is not growing. They're being done so frequently and at times that are not normally associated with the standard protocol, that the doctors aren't sure how to interpret the data that they're getting (there's nothing to compare it to). The bone marrow stain has been negative the last two times which is great. The mibg doesn't show any change. The mri shows all kinds of activity up and down Max's spine, however, it could be showing cells exploding not cell growth.
Max can't be on any thing else while on the trial. As soon as the trial is over (March) were adding Vit C, Calcium + Vit D, possibly bisphosphonate, and we're looking into a couple other things that John London & Neil Hutcinson just mentioned on acor (artemisinin, calcium butyrate).
From what I understand, the nifurtimox trial runs with topotecan/cytoxin chemo drugs. That's the beauty of this trial - Dr. Sholler is trying to find new means of helping our kids without asking us to stop using methods already in effect that have been proven to do something (hence the topo/cytox + nifurtimox).
Dr. Sholler is really trying to help us help our kids. She's in the right mind set, looking at the here and now, knowing that this is a very aggressive and elusive cancer. She's knows we can't ignore the obvious treatments like chemo just to try a new drug for some study data that may be useful 20 years from now.
My husband and I will be at the NB conference in VT in March. We hope to meet a lot of other NB parents and specialists there as well as at the conference in Chicago this summer.
1/31/2007
New Week, same stuff
He had a clinic appt Monday morning for CBCs. His red blood cells were low, so he stayed for refill (transfusion). We were prepared to stay and had lots to do including gluing a wooden tank together, playing battleship, and laying around watching TV. When Max's reds are low so is his energy level. We'll that all changed once the transfusion was complete. That kid came alive, I tell you. He did a "happy dance" and song about having his port de-accessed. He talked all the way home in the car and continued to talk (non-stop, I kid you not) until he went to bed that night... 5 hours. You couldn't shut him up. He even joked around about taking his medicine and getting his shot. (If you recall, Max has to receive 1 shot in the leg each night for 10 nights following chemo to boost his white cells.) The boy was on fire. What a hoot!
Tuesday morning he had his last radiation appointment! Hooray. Hopefully it did it's job.
He spent the rest of Tuesday at school and is there again today - for the whole day! He's so happy to be there.
Tuesday morning he had his last radiation appointment! Hooray. Hopefully it did it's job.
He spent the rest of Tuesday at school and is there again today - for the whole day! He's so happy to be there.
1/25/2007
Chemo Round IV
Max did get to start his 4th chemo treatment on Monday. His platelets more than recovered from the previous week and he was off to a great Monday start. Also received the results for his bone marrow biopsy from last week - no disease in the marrow. Love that news.
The days are definately long this week: stopping in La Jolla for radiation first, then heading down to Childrens for chemo. Somehow we've managed to get out of there before 5:00 each day. (Much thanks to all the nurses! Those gals rock.)
Max had two fun visitors this week: his very own kindergarten teacher, Ms. Weitz, has stopped by twice to tutor Max in some of the school work he has missed out on this week! The poster in the background was made by all his classmates.
And, a hometown hero here in San Diego: Trevor Hoffman (famous closing pitcher for the San Diego Padres). 
Ol' Trev stopped by with a few friends to drop off autographed baseball caps to Max and his buddy, Sam. Ok... he stopped and talked to all the other kids, too!
Max is feeling good this week. He's a little tired. I'm sure that can be contributed to several things: lack of activity, radiation, chemotherapy, boredom. His attitude is great, however, and he's been a pleasure to hang out with everyday - as usual.
The days are definately long this week: stopping in La Jolla for radiation first, then heading down to Childrens for chemo. Somehow we've managed to get out of there before 5:00 each day. (Much thanks to all the nurses! Those gals rock.)
Max had two fun visitors this week: his very own kindergarten teacher, Ms. Weitz, has stopped by twice to tutor Max in some of the school work he has missed out on this week! The poster in the background was made by all his classmates.
And, a hometown hero here in San Diego: Trevor Hoffman (famous closing pitcher for the San Diego Padres). Ol' Trev stopped by with a few friends to drop off autographed baseball caps to Max and his buddy, Sam. Ok... he stopped and talked to all the other kids, too!Max is feeling good this week. He's a little tired. I'm sure that can be contributed to several things: lack of activity, radiation, chemotherapy, boredom. His attitude is great, however, and he's been a pleasure to hang out with everyday - as usual.
1/21/2007
Chemo #4 comin' up...
Max is scheduled to start his fourth round of chemo tomorrow (Monday, January 22).
He'll start his day with an 8:15am radiation treatment at the UCSD Cancer Center, followed immediately with a CBC panel (blood counts) at Childrens. Provided his blood counts are a-okay (which is a big question this time), he'll get hooked up to the drugs and start his next five-day-whirl-wind-tour-of-chemo. His platelets were low this past week so we're crossing our fingers that they've recovered enough to start chemo tomorrow. If his counts are low we'll try again on Thursday.
He'll start his day with an 8:15am radiation treatment at the UCSD Cancer Center, followed immediately with a CBC panel (blood counts) at Childrens. Provided his blood counts are a-okay (which is a big question this time), he'll get hooked up to the drugs and start his next five-day-whirl-wind-tour-of-chemo. His platelets were low this past week so we're crossing our fingers that they've recovered enough to start chemo tomorrow. If his counts are low we'll try again on Thursday.
1/20/2007
New Scan Results & Radiation Report
Radiation
As per Wonderboy usual, Max is responding with no obvious side effects to this radiation treatments. He's halfway through the treatment with 6 appointments to go. When his tech's come out to get him, he marches right in by himself and is back out in less than ten minutes (which includes taking his shirts off, getting set-up on the table and then redressing when the radiation is finished). I did start giving him zophran (anti-nausea med) starting Thursday. His appetite seemed to be dipping a little following the radiation... and that's about the last thing he needs!
Megace
The Megace (appetite enhancer) seems to be working already. He's certainly not hungry all the time, however, he is saying, "When's dinner gonna be ready? I'm really hungry!" What music to our ears. Of course, then I have to make something he'll actually eat. Currently, boxed Mac & Cheese and Cup O' Noodles are tops on his list; bottom on my list for any nutritional value and protein content. I'll find something that makes us all happy eventually.
MRI & MIBG Scans
Max had an MRI and MIBG this week. His MIBG scan looks exactly the same as the previous - no increase in uptake but no decrease either. His MRI shows more enhancement than the last (which is not what we want to see), however, when comparing the two scans if there were more disease the MIBG would show more uptake. It's very complex and hard to explain, but we're having a leap of faith that what we're seeing on the MRI are cells being killed, not cells growing. (Scans are not typically taken at this point in the protocol, so the doctors are trying to interpret data that they don't usually look at. Max is having all these extra scans for the nifurtimox study.) At some point this conflict in scan results will need to be resolved: all scans need to show a decrease in disease.
VMA & HVA Levels
This is something we haven't mentioned before but plays an important role in tracking NB. These are catecholamines that are traced in the urine and elevate in children with NB. On his chart the levels started going up dramatically about the time he recurred and was diagnosed. These levels are steadily going down, which also supports the belief that his disease is decreasing.
As per Wonderboy usual, Max is responding with no obvious side effects to this radiation treatments. He's halfway through the treatment with 6 appointments to go. When his tech's come out to get him, he marches right in by himself and is back out in less than ten minutes (which includes taking his shirts off, getting set-up on the table and then redressing when the radiation is finished). I did start giving him zophran (anti-nausea med) starting Thursday. His appetite seemed to be dipping a little following the radiation... and that's about the last thing he needs!
Megace
The Megace (appetite enhancer) seems to be working already. He's certainly not hungry all the time, however, he is saying, "When's dinner gonna be ready? I'm really hungry!" What music to our ears. Of course, then I have to make something he'll actually eat. Currently, boxed Mac & Cheese and Cup O' Noodles are tops on his list; bottom on my list for any nutritional value and protein content. I'll find something that makes us all happy eventually.
MRI & MIBG Scans
Max had an MRI and MIBG this week. His MIBG scan looks exactly the same as the previous - no increase in uptake but no decrease either. His MRI shows more enhancement than the last (which is not what we want to see), however, when comparing the two scans if there were more disease the MIBG would show more uptake. It's very complex and hard to explain, but we're having a leap of faith that what we're seeing on the MRI are cells being killed, not cells growing. (Scans are not typically taken at this point in the protocol, so the doctors are trying to interpret data that they don't usually look at. Max is having all these extra scans for the nifurtimox study.) At some point this conflict in scan results will need to be resolved: all scans need to show a decrease in disease.
VMA & HVA Levels
This is something we haven't mentioned before but plays an important role in tracking NB. These are catecholamines that are traced in the urine and elevate in children with NB. On his chart the levels started going up dramatically about the time he recurred and was diagnosed. These levels are steadily going down, which also supports the belief that his disease is decreasing.
1/14/2007
OK, if you REALLY want to help...
Andy & I know you all love Max and want to do something for him, and because of that Max is receiving lots of great stuff from everyone - too much stuff. We're having some issues on the home front due to it. wink ;-)
We thank you for all your thoughtfulness and caring. We know you all want to help Max in some way, however, the gifts, the money to buy a book for himself, the new clothes... it's all a little overwhelming for a five year old boy! (Stop it, and I mean it.) (I'm not kidding.) (Stop looking at me that way!)
"Gee," you say, "I really want to do something for this great little kid. I really want to help!"
Well, we say you still can. You can do something that could stop neuroblastoma in it's tracks and help Max get through this battle and into adulthood. Please make a donation in honor of Max to the Penelope and Sam Fund. We have chosen to support this fund because the research and trials being done through it are multi-agent studies: they utilize drugs that have been shown to work against NB while adding new agents to the mix to hopefully get better results.
The Penelope and Sam Fund was set up by the parents of Penelope London and Sam Hutchison (Max's Nintendo buddy) to fund new treatments for relapsed neuroblastoma. The research is being headed up by the amazing Dr. Giselle Sholler at The University of Vermont. The fund has already made possible a new clinical trial for Nifurtimox (which Max is on right now). We are deeply grateful for any and all donations. Please know that no donation you can make is too little. 100% of your money will go to researching (not a salary) and beating this nasty disease. All donations are tax deductible. Thank you from Max and all kids fighting nb.
You may make your check payable to:
Penelope and Sam Fund
c/o Rick Blount, Assistant Dean for Development & Alumni Relations
The University of Vermont College of Medicine
E-100 Given Building, 89 Beaumont Ave.
Burlington, VT 05405
Voice: 802-656-4405/ Fax: 802-656-5788
Rick.Blount@uvm.edu
We thank you for all your thoughtfulness and caring. We know you all want to help Max in some way, however, the gifts, the money to buy a book for himself, the new clothes... it's all a little overwhelming for a five year old boy! (Stop it, and I mean it.) (I'm not kidding.) (Stop looking at me that way!)
"Gee," you say, "I really want to do something for this great little kid. I really want to help!"
Well, we say you still can. You can do something that could stop neuroblastoma in it's tracks and help Max get through this battle and into adulthood. Please make a donation in honor of Max to the Penelope and Sam Fund. We have chosen to support this fund because the research and trials being done through it are multi-agent studies: they utilize drugs that have been shown to work against NB while adding new agents to the mix to hopefully get better results.
The Penelope and Sam Fund was set up by the parents of Penelope London and Sam Hutchison (Max's Nintendo buddy) to fund new treatments for relapsed neuroblastoma. The research is being headed up by the amazing Dr. Giselle Sholler at The University of Vermont. The fund has already made possible a new clinical trial for Nifurtimox (which Max is on right now). We are deeply grateful for any and all donations. Please know that no donation you can make is too little. 100% of your money will go to researching (not a salary) and beating this nasty disease. All donations are tax deductible. Thank you from Max and all kids fighting nb.
You may make your check payable to:
Penelope and Sam Fund
c/o Rick Blount, Assistant Dean for Development & Alumni Relations
The University of Vermont College of Medicine
E-100 Given Building, 89 Beaumont Ave.
Burlington, VT 05405
Voice: 802-656-4405/ Fax: 802-656-5788
Rick.Blount@uvm.edu
1/12/2007
Lots Going On...
At Max's clinic appointment on Monday 1/8 we spoke with his oncologist about school and when we should keep him at home due to low blood counts (ANC). (If Max gets an infection that results in a fever he will end up in the hospital getting IV antibiotics for 10 days. When his ANC drops this is a distinct possibility.) The doctors' feeling was that even when Max's ANC is low it is much more likely that if he were to get an infection it would be caused by a virus already in his body and not by a runny-nosed friend at school. So this great news... Max can go to school much more often than we were expecting. This is such a great relief for us - and for Max even if he doesn't know it - that he will be able to keep up his social activities with his friends. Along with medical health, mental health is so important!
We started Max on an appetite enhancer, Megace. You'll see in the radiation photo below how thin the boy is! He weighs a whole 37lbs. It will take 2-4 weeks before we start to see a change in his appetite. We can't wait.
We're also looking at adding something called a bisphosphonate to his treatment cocktail. It's a bone strengthener used commonly in cancer treatments and osteoporosis. Since the cancer he has right now is in his bone (and he's receiving radiation to his bone) we thought this would be a good addition. Max may need to wait until the Nifurtimox trial is completed before adding this, because there is also a trial on this drug testing the theory that it may make bones stronger which then makes it more difficult for cancer cells to attack said bone (this is my layman's explanation - don't quote me!). Whether that's true or not we do not know, however, couldn't hurt, could it!
We started Max on an appetite enhancer, Megace. You'll see in the radiation photo below how thin the boy is! He weighs a whole 37lbs. It will take 2-4 weeks before we start to see a change in his appetite. We can't wait.
We're also looking at adding something called a bisphosphonate to his treatment cocktail. It's a bone strengthener used commonly in cancer treatments and osteoporosis. Since the cancer he has right now is in his bone (and he's receiving radiation to his bone) we thought this would be a good addition. Max may need to wait until the Nifurtimox trial is completed before adding this, because there is also a trial on this drug testing the theory that it may make bones stronger which then makes it more difficult for cancer cells to attack said bone (this is my layman's explanation - don't quote me!). Whether that's true or not we do not know, however, couldn't hurt, could it!
Here's yet another photo of Wonderboy (he's smiling in there!). Max just started radiation treatments at the Moores UCSD Cancer Center in La Jolla. He'll be receiving 12 treatments, 12 days in a row(excluding weekends!). The making of this mask was quite possibly one of the most amazing feats Max has pulled off. It starts off as a flat screen. The tech warmed it up in water then stretched it down over Max's face and head and held it there for 15-20 minutes while it cooled and hardened. Max just laid there and did it. No biggy. Of course, I just carried on like this was an everyday event (all the while I thought my eyes might pop out of my head wondering when he was going to reach the end of his rope). Now Max wears his mask everyday for his radiation treatment for about 5 minutes. He lays on the table, puts on the mask and the "guys" get the sharpie marks drawn on his body lined up with the lasers. Then everyone has to leave the room and Max receives the radiation in there all by himself. I even have to wait in the lobby! He comes out all dressed and smiling. Unbelieveable!
Next week he's scheduled for an MRI, bone marrow aspiration, and MIBG scan in addition to radiation. His next chemo is scheduled for 1/22 pending blood counts.
1/09/2007
Clarification
Let me clarify my early morning post below. Actually, the scan results from Vermont were mixed. The MRI results showed lesions at C2, T1-5, T7, T11 and L1 vertebrae. This is - characterized by Max's SD onc - as stable. However, Max will be having his whole spine irradiated starting on this Thursday and will go every weekday for 12 days.
Some progress...
We're back from Vermont. We got back to San Diego on Sunday, around noon, after 6 days away from home. Max was very, very happy to be home, see Hannah and Nic (and Mommy too of course!)... and play his Star Wars video game, 'natch.
Tuesday (1/2), our first day at the hospital, you'll recall that Max had an MRI and bone-marrow aspiration/biopsy. Well we just heard from Dr. Sholler, Max's onc in Vermont and the results of the bone marrow were negative! So we're happy to have some early indication of progress after 3 courses of chemo. Don't know if the Nifurtimox is helping or not and quite honestly am not going to worry about it too much... just like to see progress.
Below, some additional pics from Vermont. It was quite warm during the rest of our stay but Max still had a good time, especially at the ECHO center a few blocks away from the RMH where we stayed.
Tuesday (1/2), our first day at the hospital, you'll recall that Max had an MRI and bone-marrow aspiration/biopsy. Well we just heard from Dr. Sholler, Max's onc in Vermont and the results of the bone marrow were negative! So we're happy to have some early indication of progress after 3 courses of chemo. Don't know if the Nifurtimox is helping or not and quite honestly am not going to worry about it too much... just like to see progress.
Below, some additional pics from Vermont. It was quite warm during the rest of our stay but Max still had a good time, especially at the ECHO center a few blocks away from the RMH where we stayed.
1/02/2007
Vermont - round 2
Arrived in beautiful, snow-covered Burlington Sunday night - New Year's Eve - after a long day in the air. United managed to lose our luggage, leaving it at Dulles where we had transferred from the relative comfort of a UA 757 in Econo Plus to a Embraer regional jet.
Aboard the Embraer United regional jet.
United must've decided the little jet was too heavy as it was obvious why our "big" suitcase was left behind while our smaller two made it through. Of course, the big suitcase held Max's and my clothes so we were without a change of clothes the first night.... and of course Max wet himself Sunday night and I hadn't prepared for that, so he spend Monday morning - New Year's Day - pantless in our room. I have a picture of him playing on my computer that I would love to post as only another parent would appreciate it, but alas I'd probably have the San Diego Police child p*rn team at my house waiting for my return.
Max - in a "clean" photo of the situation I mentioned above.
We had Monday off but didn't do a whole lot... Max got a cool book on dragons at the downtown Burlington Barnes & Noble, one of the few stores open on New Year's. And so we spend most of the day fooling around the house, reading and generally doing “nothing”, which was nice, especially in preparation for today, Tuesday our first official day in clinic.
In front of RMH Burlington.
Today started off pretty good. Max was scheduled for an MRI and bone marrow aspiration, so he couldn’t eat or drink anything after 6am. We got the beautiful UVM medical center at around 7:30, early for our 8:00 start time but hopeful we could get going quickly. Didn't happen though we did start soon after 8am, only to find that our 9am MRI appt was bumped to 11am for some reason. So, Max played video games (they have a cool GameCube cart) and I tried to get organized and do some NB-parent work.
Hooked up for a neurological scan.
Max went in for his MRI around 11:15 and came out around 2:00 after full-body scan plus a bone-marrow aspiration + biopsy procedure on his pelvis. Nevertheless he recovered from the anethesia quite quickly and rose to eat his favorite post-op treat, popsicles. He was still so groggy while eating the popsicles he was having trouble getting them into his mouth, which was both quite funny and sad as the same time. NB parents reading this realize this funny/sad dichotomy happens quite often, and its part of the challenge to embrace both the good and the bad, sometimes at the same time, as it happens.
Eating graham crackers and popsicles while recovering from anesthesia.
The rest of the day was pretty uneventful. The staff at Children's Specialty Center (the outpatient infustion clinic in other words) worked very hard and effectively to get Max out at the scheduled time of 4pm. Tonight, Max ate oranges for dinner. His first time eating an orange and he ate four of them tonight! Actually they're those clementine tangerines that are so yummy and easy to peel. Nevertheless, he's hooked which is great for us and for him!
Finally, after MRI and bone marrow aspiration, chemo and Super Mario Cart Racing on the GameCube.
Tomorrow will be an easier day. I'm going to make Max a giant batch of pancakes for breakfast, as some people here say Vermont has good syrup, whatever that means... I thought Aunt Jemima was from the South...
Aboard the Embraer United regional jet.
United must've decided the little jet was too heavy as it was obvious why our "big" suitcase was left behind while our smaller two made it through. Of course, the big suitcase held Max's and my clothes so we were without a change of clothes the first night.... and of course Max wet himself Sunday night and I hadn't prepared for that, so he spend Monday morning - New Year's Day - pantless in our room. I have a picture of him playing on my computer that I would love to post as only another parent would appreciate it, but alas I'd probably have the San Diego Police child p*rn team at my house waiting for my return.
Max - in a "clean" photo of the situation I mentioned above.
We had Monday off but didn't do a whole lot... Max got a cool book on dragons at the downtown Burlington Barnes & Noble, one of the few stores open on New Year's. And so we spend most of the day fooling around the house, reading and generally doing “nothing”, which was nice, especially in preparation for today, Tuesday our first official day in clinic.
In front of RMH Burlington.
Today started off pretty good. Max was scheduled for an MRI and bone marrow aspiration, so he couldn’t eat or drink anything after 6am. We got the beautiful UVM medical center at around 7:30, early for our 8:00 start time but hopeful we could get going quickly. Didn't happen though we did start soon after 8am, only to find that our 9am MRI appt was bumped to 11am for some reason. So, Max played video games (they have a cool GameCube cart) and I tried to get organized and do some NB-parent work.
Hooked up for a neurological scan.
Max went in for his MRI around 11:15 and came out around 2:00 after full-body scan plus a bone-marrow aspiration + biopsy procedure on his pelvis. Nevertheless he recovered from the anethesia quite quickly and rose to eat his favorite post-op treat, popsicles. He was still so groggy while eating the popsicles he was having trouble getting them into his mouth, which was both quite funny and sad as the same time. NB parents reading this realize this funny/sad dichotomy happens quite often, and its part of the challenge to embrace both the good and the bad, sometimes at the same time, as it happens.
Eating graham crackers and popsicles while recovering from anesthesia.
The rest of the day was pretty uneventful. The staff at Children's Specialty Center (the outpatient infustion clinic in other words) worked very hard and effectively to get Max out at the scheduled time of 4pm. Tonight, Max ate oranges for dinner. His first time eating an orange and he ate four of them tonight! Actually they're those clementine tangerines that are so yummy and easy to peel. Nevertheless, he's hooked which is great for us and for him!
Finally, after MRI and bone marrow aspiration, chemo and Super Mario Cart Racing on the GameCube.
Tomorrow will be an easier day. I'm going to make Max a giant batch of pancakes for breakfast, as some people here say Vermont has good syrup, whatever that means... I thought Aunt Jemima was from the South...
Subscribe to:
Posts (Atom)