Although the Archives page give our more personal details about Dylan's life with cancer, this page is more directed strictly at his medical history. I would often have to refer to this page with doctors to remember when certain things were done to Dylan as we discussed the next thing to do. Unlike the Archives, this one reads chronologically from top to bottom.
SYMPTOMS/SURGERY - 2007
In June 2007 Dylan had been having bouts of nausea, vomiting and headaches, throwing up and then going off to school and being fine for the day; then the bouts came more frequently as we headed into the summer. He would often go to sleep after throwing up and we also noticed he was falling more frequently, having trouble writing his letters and had become more violent and irritable. Jana (aka mommy) took him to his pediatrician,who found an ear infection and prescribed antibiotics. She thought it was possible the infection could cause these symptoms, but feared something worse, but said to keep an eye on him and let her know if things declined. Jana and the boys went on a vacation together in July (I was too new at work to afford to leave for 10 days), and things got worse there. They returned, and Jana took Dylan to see a neurologist, who ran an EKG, and did not like the findings. He scheduled an MRI for the end of July, the 31st. On the 27th Dylan threw up, in his sleep this time, and it did not wake him up. Fearing the possibility that he might choke to death, we moved up the MRI to that night, a Friday, at 6 pm. By that time, there was only a technician to run the machine, but no one to give a contrast injection to get better clarity and no one to read the results. We could see a mass in his brain, in the back, near the spinal cord, about the size of a ping pong ball (which seems even larger, proportionately, to his small head).
We came back the next morning and took Dylan to the ER at Cedars Sinai, just to see if someone could read the MRI. Despite the mediocrity of the images, the neurosurgeon there called his boss (one of the best in the country), and his supervisor, the lead brain surgeon, said he would take the case himself personally and bump him up to the first appointment on Sunday. The speed with which this all happened was frightening. On Sunday morning, I wrote this to everyone I could reach via email: July 29: If you haven't heard yet: It's been the worst weekend of my life as we have had to rush our son Dylan, 5, to emergency brain surgery to have a golf ball sized tumor removed from the back of his head. He is in the OR as I type this and we do not have a prognosis yet. We should know more tonight after the 6-8 hour procedure. It has been very hard on us all; we are really scared. The surgery lasted 8 hours. The surgeon thought it was an ependymoma, but he tumor would be analyzed and determined to be anaplastic medulloblastoma, part of the family of tumors called SRBCTs (small, rounds, blue cell tumors), malignant tumors commonly found in children. Medulloblastoma is the most common malignant (cancerous) central nervous system tumor in children. It accounts for 15 to 20 percent of all pediatric brain tumors. The anaplastic subtype is more rare, and more aggressive. Dylan also suffered the equivalent of a stroke during surgery (more in the next block of text).REHAB/EYE SURGERY/SIDE EFFECTS - 2007 Rehab was (and remains) necessary because of a stroke Dylan suffered during the craniotomy surgery (technically posterior fossa syndrome) which gave him severe ataxia or lack of coordination and muscle movement. He also had a VP shunt installed during surgery, to help drain excess brain fluids to his bladder, which could (and probably will) malfunction. After the surgery, as a result of the stroke, his right side (he's right-handed) was very weak, his speech was slurred and his eyes were slightly crossed (called strabismus a result of sixth-nerve palsy). He could not open his eyes, smile, or sit up. While in the hospital, Dylan's monthly course of treatment basically ran a week on chemo drugs, a week of side effects and two weeks of rehab (physical, occupational and speech therapies, plus school taught by LAUSD teachers). He started walking in December, about ten paces steadily, and was able to run in March. He lost all of his hair, which grew back (March 2008). He has had eye surgery but will need more to correct his eyes. His growth has slowed, almost to a standstill. Human growth hormone was suggested, but this can also help speed the growth of cancer cells.
Finally, Dylan has suffered some permanent hearing damage as a side effect of the chemo. Hearing aids will help here, which we are in the process of trying to get for him.
CHEMO - 2007- 2008
Rounds 1-5: Head Start high-dose chemo The chemoRx meds Dylan was on during his first five rounds were: vincristine, cisplatin, etoposide, cyclophosphamide, high dose methotrexate with leukovorin rescue, then Neupogen to aid with recovery of blood counts. He had frequent infusions of blood and platelets through all six rounds. Each round took about a month to complete. Supporting meds he has taken have been: G-CSF, Zofran, Mesna, Flagyl, Fluconazole, Bactrim, Dulcolax, , Dapsone, numerous other antibiotics, Phenadoz suppositories, and, for pain, morphine, Benadryl and Tylenol, sometimes with codeine. They give him propofol to put him under for MRIs. Round 6: BMT In late February 2008, Dylan completed the final of six rounds of chemo, the first of which started in August. This round involved an extra powerful dose of methotrexate as well as a hematopoietic stem cell transplant (his own stem cells from his bone marrow were harvested and kept on ice). He was also given thiotepa and carboplatin during the sixth round. Because his immunity drops so drastically, he was in isolation the whole time, not able to leave his room and not able to accept visitors. It is by far the most intense of the six rounds he has endured. During this final round, and at the worst possible time, Dylan developed pneumonia as a result of the RSV virus for which they gave him Synagis, and is undergoing Ribavirin treatments three times per day, which are intimidating and difficult for everyone involved. Dylan was extremely ill and our head nurse said she wasn't sure if Dylan was going to make it at one point. Dylan originally had a "power line" -- two IV lines that go directly to his heart, hanging from a hole in his chest, covered with clear plastic dressing, which was cleaned daily with heparin (now made famous by the sad case of Dennis Quaid's twins), but which became unusable -- for the last two rounds he was switched to a port-a-cath and a PIC line. He also got loads of IV hydration to flush out the chemo drugs, which kept him busy in the bathroom.
CANCER-FREE (?) - 2008 Prior to the above 2009 scan, checkpoint MRIs and spinal taps in October 2007, January, March, July & October 2008 were clean. Dylan returned to school and lived a relatively normal life. He loves Scooby Doo, Ben 10 and Pokemon. He earned a yellow belt in karate and loves climbing on the monkey bars and playing anything with a ball (his first word). Through all our struggles, Dylan's determination to recover and willingness to go through the sheer hell of chemo, medicines, side effects, and boredom of hospital routines has been an inspiration to us and many who have heard his story.FIRST RELAPSE - 2009 Dylan had an MRI on January 23, 2009. His brain scanned clean, but his spine showed small tumors (see image to the right). Nearly a year after beating cancer, relapse has hit us harder in many ways than the first time through. A spinal tap on January 29 was negative for cancer cells in the spinal fluid. This was good news among all the bad: it had not spread. A biopsy on February 5, however, showed it to be positive for a recurrence of medulloblastoma, manifested as Leptomeningeal Disease, which online medical textbooks say is a grim prognosis. There are anecdotal stories of survivors of this, but the odds are not great, scientifically speaking. Nevertheless, we refuse to give in, and try to stay positive and hopeful for cure. The plan was chemo for two months at UCLA, then radation for six weeks, and then an experimental antibody treatment at Sloan Kettering in New York for four more weeks. Side effects of the chemo involve low blood and platelet counts, hair loss, nausea, more heaing loss, but thankfully not the mouth sores he had the first time. Side effects of the radiation can be damage to his intellectual functioning in addition to the same side effects of chemo. Also, the area where the blast of radiation was sent into his brain stops his hair growth permanently, a three-inch spread around the back bottom of his head. Side effects of the antibody treatment are headaches (from the antibodies latching on to nerve cells) and nausea. They have drugs to combat most of these side effects.
Chemo We began chemo February 19. Here are the meds and basic roadmap of treatment: CHEMO FOR 1 or 2 months: Cytoxan days 1 and 2 (in hosp) Irinotecan days 1 and 7 (day 7 outpatient) Temodar days 1 thru 5 (oral) Radiation Then on April 27, we started radiation therapy for 6 weeks, plus carboplatin Mon through Fri (and vincristine on Mondays). The chemo was paused in Maybecause Dylan's blood counts were dropping too low. Radiation continued after some pauses and completed June 23rd. An MRI on July 8 showed that the tumors had shrunk to about half their size. This was great news and we hope the shrinking continues, since radiation continues to have an effect even after the treatments have stopped. He also had an infection at the time called bacteroides that caused him to be in the hospital for 4 nights and to miss the 4th of July fireworks. Antibody The next treatment is an open study of antibody treatment that is very promising. It is in phase 2 of the study, which determines the amount of dose that is safe to give. A couple dozen other children are or have been on this study.
Prior to beginning treatment, Dylan had a Medtronic Strata II programmable valve installed where his shunt is now. All our surgeries are done at Cedars Sinai, since that is where his original brain surgery was done.
- Then we flew to New York for treatment at Sloan Kettering (late July through the end of August, possibly into early September) for the antibody treatment (technically intrathecal monoclonal antibody treatment, aka 3F8). The idea is to radiate mouse antibodies and inject them into Dylan's brain and spinal fluid. They float around in there, and latch on to any cancer cells that are in there, and are not detectable by scans, and kill them. The antibodies also work by alerting the body's white blood cells that the cancer cells are foreign and should be eliminated. Cancer cells masquerade as normal cells, which is why it is such an insidious disease. This is cutting edge and still somewhat experimental medical technology. We hope it is the path to curing Dylan's cancer. According to the paperwork we had to sign: 3F8 is an antibody, a protein that attaches to cancer cells. When radioactive iodine has been attached to the antibody, it is referred to as 124I-3f8 and 131I-3F8, which delivers radiation right to the tumor. The 124I-3F8 (about 2 millicuries [mCi] are put into Dylan's valve. A few days after this, four weekly injections of 131I-3F8 (about 10 millicuries [mCi]) are injected. Before the injections, Dylan will be given several medications (listed below) to project the tyroid gland from the radioactive iodine and to prevent other side effects. He may also be given Tylenol, Vistaril, Atavan and/or Dilaudid to prevent allergic reaction or fever. He is given periodic treatments of pentamidine to prevent pneumonia. Before treatment could begin, Dylan had a 48-hour CSF flow study which determined how well his cerebral-spinal fluid is flowing. He passed the test, although it did not look promising after the first 24 hours. Additionally, his platelet count was low and bilirubin (TBIL, AST and ALT) counts (a liver enzyme test) were high (Prehepatic). Both prevented commencing the treatment until the levels normalized. Having cleared those hurdles, we were told that Dylan's CSF flow was too slow and that he would only get one instead of four therapeutic treatments. This was a blow to us, so my wife looked into some alternative therapies that say they can increase CSF flow. We returned to Los Angeles on September 8 to let the boys attend the first week of school, and to get Dylan the cranial-sacral therapy. Unfortunately, the alternative therapies and antibody treatments were not successful: scans showed the treatment just stayed up in Dylan's brain and did not move down into his spine, where the cancer is. However, MRIs during our trip showed no change in his tumors, and a test of his CSF fluid at the end of treatment was clean of cancer cells. The medications he took during the week throughout this course of treatment were: Cytomel (liothyronine sodium) to shut down his thyroid. 2 tablets nightly at bedtime: started 7-31: F S Su M T W
- SSKI (potassium iodide) to shut down his thyroid. dilute 7 drops in liquid and drink nightly: started 7-31: F S Su M T W
- Dexamethasone Steroid to reduce inflammation. 2 tablets 2 x/day on the day before, the day of and 2 days after injection.
- Ranitidine Protects stomach from Dexamethasone. take 1.5 ml by mouth 2 x/ day on days then taking steroids: 10 – 15 minutes before Dex.
- Zofran (anti-nausea), as needed.
- Hydroxyzine (anti-nausea) as needed.
- Acetaminophen /codeine (pain), as needed.
- Propofol to put him under for MRIs.
MAINTENANCE - 2009-2010
In September 2009 Dylan's oncologist felt hopeful since the MRIs done over the summer showed no change, and that the CSF fluid they tested had no tumor cells in it. He was also hopeful because we have many things left to try. No one has the corner on the market treating this kind of cancer, he said. Dylan was given a few oral medications for "maintenance" - SAHA (aka Zolinza), and Accutane. He also was on a prescription vitamin D medication Rocaltrol (aka Calcitriol). The plan was to give him pills long enough to cover the time span from the first diagnosis until the relapse, and since this recurring cancer is more aggressive, the chances are that it would have shown up by then or else it is all cleared out of his body. Dylan's hair thinned as a side-effect of the Accutane and some of it may be permanent; it does not appear to have grown back. He is also going to be short all his life, currently skewing toward the lower percentiles for height for kids his age, as a result of the radiation to his spine. An MRI in October 2009 and it showed no change from the previous scans. Our hope was that, with the good MRIs and negative CSF fluid tests, it could be that the tumors that it shows haven't changed are dead, although it's hard to tell without another biopsy, which was too dangerous to perform. MRIs in January and April 2010 also showed no changes. According to our oncologist: "If Dylan’s cancer recurs again, then I fear he will not be cured, although further treatments may palliate him for a while……maybe months, but not years." There are some new highly investigational agents being studied for medulloblastoma -– of course, Dylan has already received one (the radiolabeled antibody from MSKCC) and is currently receiving the “hottest” new drugs!!! But there are a couple of others only available in a clinical trial and as a single agent (ie no other drugs permitted)….but hopefully, our current strategy of treatment over the last 16 months will prevent this from happening!"
Since we were more outpatient than the first time, he was able to lead a relatively normal life. He went to school, had playdates, sleepovers and other kidstuff.
SECOND RELAPSE - 2010-2012
We met with our oncologist at Children's Hospital on July 22, 2010 to go over the results of the MRI scan they did of Dylan’s brain and spine on July 21, which showed the cancer had returned. The spine was clean, but there were a couple of spots in the brain scan. There is one tumor in the leptomeninges (outer coating of the brain and spinal cord) near the right temporal lobe; about 8mm x 5mm x 8mm in size. He showed us the MRI, with an arrow pointing to the tumor (at right). There is another spot in the temporal horn that he was not certain is cancer; but which subsequent scans showed to be growing. His fear, and ours, is that this is just “the tip of the iceberg” and there are other cells floating around, perhaps growing as tumors, that are too small for MRI detection. Although he is an inveterate optimist, he did not sugar coat things for us: this prognosis is very dire and there are not very many treatments left in the arsenal to use. The silver lining is that this relapse took longer to show up than the first one did, which is rare; and Dylan is strong and has gained back a lot of his energy since the last MRI showed any tumor growth. Also relatively good news is that they have caught this fairly early in the stages, instead of finding it through symptoms Dylan might show. They also both mentioned the fact that we have a huge network of support, that they have witnessed first hand, to rely on, and that is no small benefit to families going through such a trial. We kept a planned vacation to New York in August, took Dylan off the "biological therapy" maintenance pills he was on, and then returned for another brain scan on August 25, which showed the tumor had grown. The second spot had no significant change. However, there were no new spots and the spinal fluid was clean, which was good news. Our oncologist was also elated that the tumors were growing so slowly. Second Brain surgery
Dylan had surgery on September 22 at Cedars Sinai and the neurosurgeon got all the tumor out. Post-surgical scans showed that the second spot had grown, more bad news. Our next step was to investigage using stertotactical radiation surgery, called gamma knife (also known as cyber knife), which uses highly focused beams of radiation to blast the tumor and those cells only. We spoke with our radiation therapist at UCLA about gamma knife, but he did not recommend it, as he wanted to leave the tumor in there as an indicator of the success of our next therapy: vaccine treatment. We made plans to travel to Belgium for six weeks. Vaccine treatment "Adjuvant dendritic cell-based tumour vaccination", administered at University Hospital Gasthuisberg in Belgium (Leuven, near Brussels), uses a vaccine approach against cancer. It is a fourth "modality" for cancer treatment (in addition to the standard three: surgery, chemo and radiation). They take a sample of the tumor and inject it back in as a vaccine, the doctor said. It is a six-week therapy, so I think we would all travel together. Dylan would be a perfect patient for this program, he said. Even better, he added, most hospital expenses are paid for by the state.
In the words of our oncologist, "Basically, the Belgian trial is the BEST established trial for CHILDREN with brain tumors anywhere in the world, particularly for medulloblastoma; the currently available trials in the US FOR CHILDREN, are restricted to children with malignant gliomas -NOT medulloblastoma." Here is a good video with more information about this tumor vaccination. And this recent paper gives the results of the project through a couple of months ago. And, lastly, you can click on the Download link for the PDF link at the bottom of this page ("vaccine.pdf") for our informed consent form, which outlines the therapy in medical detail, as well as the graphic explanation attached below as well ("principle of tumor vaccination.pdf") that shows the normal vaccine process on the leftt and the cancer vaccine process on the right. On October 11, Dylan had a spinal MRI which showed two small spots at the bottom of the spine. This was hard news to take. Dylan had a serology to confirm that he does not have HIV, hepatitis B/C, syphilis or HTLV, and was cleared to go to Belgium. We did receive the good news on Oct 31 that the CMYC assay on the recent tumor sample indicated that CMYC was NOT amplified in Dylan's tumor; while the significance of this in recurrent tumors is nor known, CMYC amplification in anaplastic medulloblastoma is a particularly bad prognostic sign -- and therefore its absence in Dylan may provide encouragement that his tumor is still responsive to treatments. The leukapheresis was on the 21st of October. In the afternoon, a deep venous catheter was placed in Dylan's right leg (into his vena cava), under short general anesthesia. The catheter was only in on the evening before the apheresis and during the apheresis which occurred on October 22. Dylan only had one overnight stay in the hospital with one parent allowed in the room.
- The dates of the first four weekly injections were Thursday 4/11
- Wednesday 10/11
- Wednesday 17/11
- Wednesday 24/11
The vaccinations were given in the morning between 11.00 AM and 1.00 PM, afterwards we could leave the hospital. The injections are just little ones in the arms, and he was feeling strong and healthy, so we toured Europe between injections. We returned to the U.S. on the 25th of November, Thanksgiving Day, with much to be thankful for. The 5th injection is scheduled for 4 weeks after the last one, (Dec 22), so we were planning to return to Belgium then (either Jana or myself and Dylan, not the four of us). Injections are now once per month for three months, before we go to quarterly injections, as long as there is enough tumor material to continue to manufacture the vaccine. It may run out before we go to quarterly. Gamma Knife
Dylan had a brain and spine MRI scheduled at Children's Hospital Los Angeles on December 13. The spine was stable, but the lesion in the brain had grown.
Since the vaccine appeared not to be working, we cancelled further plans to return to Belgium for any further injections and decided to stay close to home, for gamma knife at UCLA and some open studies (oral medications) we can take here. Dylan had gamma knife sugery on January 5, 2011 at UCLA Hospital, where we have been before (below). There is possible risk of damage to about 1-3 mm of healthy tissue, which in this area of the brain might make Dylan susceptible to seizures or headaches for a while after surgery. Dylan did in fact have a grand mal seizure on January 8, and has been put on Keppra, an anti-seizure medication. He had a few smaller seizures that made him have a "scary feeling," so we were already preparing to take him to the hospital when the big one hit. He was alright, although we were scared. A sleep-deprived EEG given the following week showed no more seizure activity, but our oncologist wants to keep him on the Keppra until all the tumors in his head are dealt with. We had an MRI scans six weeks after the surgery, on February 10. That showed a decrease in size to the tumor that was radiated; along with a new spot around 9 mm in size in the left temporal lobe. Despite this news, we decided to continue on with the next planned treatment, an internal study at Children's Hospital. * Dylan's latest clinical note is attached at bottom, dated 12-22-2010. CHLA Internal Study We started Dylan on February 16, 2011 with an internal study done at CHLA under Dr. Dhall. This is a study of a combination of three drugs that, independently, have shown effectiveness in stopping tumor growth. The three drugs are all oral and have a low toxic profile. Relivmid: http://en.wikipedia.org/wiki/Lenalidomide Sprycel: http://en.wikipedia.org/wiki/Dasatinib Temodar: http://en.wikipedia.org/wiki/Temozolomide Temodar is a chemo drug that kills the cancer cells, but also stops the blood flow to the tumors, as does Revlimid. Dylan will take those two once a day for 21 days. Sprycel targets the genes that make tumors grow. He'll take that twice a day for the same 21 days. Then he'll take a week off. This repeats as long as it seems to be working. While Dylan's Echo/EKG tests and blood tests were alright on the medication, his platelets dropped low enough for him to take a break on it after a month of taking the pills, but he resumed after a week off. However, an MRI on April 18, 2011 showed that Dylan was not responding to the medicines so, after consulting with our oncologist on the various options (one which includes a new stem cell transfer, possibly with Dylan's brother being a donor if he is a match), we decided to try a new open study in Boston.
Dylan and mom flew to Boston in early June to start a Phase 1 Open Study at the Dana Farber Cancer Center to test a drug called LDE225. Phase 1 studies aren't just testing to see if a drug works with humans, but also to determine the level of dose they can give without it being toxic to the patient. So this is doubly frightening in the potential side effects it may have. And long term effects are not known at all since the drug is so new. The drug goes after a pathway that allows tumors to grow, called a Sonic Hedgehog Pathway Inhibitor, we are hoping this medicine does not stop other parts of his body from growing. They have taken x-rays of his bones and teeth to measure if there is any slowing in his growth (which is already slowed from his many other treatments). They also did another MRI as a baseline and ran a battery of blood tests. Dylan had an MRI on July 27, 2011, which showed that the tumors had continued to grow. Oral Etoposide Having returned to Los Angeles, Dylan is currently on oral etoposide, the single-best chemo drug one can try alone (instead of as part of a cocktail). An MRI on August 31, 2011 showed that the tumors had shrunk, some even disappeared, which was the first good news we have received in years. Additional MRI and PET scans on October 4 and 5, respectively, showed additional tumor shrinkage along with a reduction in the swelling around the dying tumors from August. Also, the PET scan showed the tumors were for the most part dead, as much as can be detected with their samples. A lumbar puncture (spinal tap) showed no change in the number of "suspicious" cells, which can also be taken as good news and no cause for worry, according to our oncologist. Dylan's blood counts remained steady and strong. additional scans in early November and December showed continuing shrinkage, and "stable" in January and March 2012.
Third Brain Surgery We were facing a bone-marrow transplant with high-dose chemo in the June 2012 time frame. They have found a man in January who is a 9-out-of-10 match in Germany and June was the time he could donate. We put Dylan through a score of invasive tests for insurance approval and medical appropriateness of the match and then had to run the tests all over again because they have to be used to set a baseline 30 days before starting the procedure (insurance took longer than 30 days to approve). However, the final MRI of these tests showed that the lesions had grown and the bone marrow procedure was put on hold. Dylan underwent brain surgery again, on the left side this time, on June 14, 2012, to remove as much of the tumor as possible and to biopsy it to see if it is medulloblastoma or another, mutated form, of brain cancer. The results showed it was medulloblastoma, and most of it was alive, not necrosed as we had hoped, but they got most of it out. Erbitux On July 11, 2012, Dylan started a new antibody therapy, Erbitux, that has been successful with one other kid with medulloblastoma. The treatment is outpatient and is a simple injection into his port in his chest. After a month of injections, Dylan showed only minor side effects until he suffered multiple seizures on September 5, 2012. An MRI the same day showed the tumors had grown, and that Dylan had more tumor load than ever before and that it was growing faster than ever before.THIRD RELAPSE - 2012-presentNOTE: the definition of a relapse has not always been sharply defined for us. The below "first" and "second" relapses were major growths of tumor, detectable with scans. We may have had others, technically, but this divides up the journey more distinctly. An MRI on September 5, 2012 showed the tumors had grown, and that Dylan had more tumor load than ever before and that it was growing faster than ever before. Basically, he is out of options. We could try a few other things out of desperation, but our self-described "cockeyed optimist" oncologist has recommended hospice and palliative measures. Dylan started palliative whole-brain radiation on September 17, 2012. On September 18, he suffered more tonic-clonic (grand mal) seizures. Trinity Kids Care Hospice, which we had recently set up, came and administered medication to control it. This round of seizures left him with severe amnesia and no ability to store short term memories. He remembers long-term memories, who we are in our family, but can't remember much since he got cancer and also can't remember anything that just happened to him. He completed radiation on October 10 with no more seizures. He is on more Keppra, and is also taking Decadron to reduce swelling inside his head (thus causing the outside of his head to swell). It also makes him very hungry, so he has gained a lot of weight, nearly 20 pounds. He has also lost most of his hair, again.
An MRI on November 13, 2012 showed significant shrinkage of the tumors, which buys him some more time. Some were not visible where before there were small lesions, two remaining shrank by about a third, which was greater than expected.
A meeting with the oncologist on November 28 addressed some issues: Dylan had been sleeping literally all day long because of the prolonged taking of the steroid Decadron. We tapered off that for another week and set a meeting for December 5 to check his blood counts. We learned there were no Phase 1 studies for which Dylan qualifies, but that's almost a relief since those are to determine toxicity levels and can be quite harrowing, and also usually involve travel. The doctor suggested we start on the chemo drug Avastin, which may also alleviate any sleepiness, and on CCNU (three rounds of Avastin to one of CCNU, every six to eight weeks), which usually works for children who have failed with Temozolomide (which Dylan has had, and which did not work). We decided to start this regimen on December 5, 2012. Dylan also received Pentamidine that day, which prevents pneumonia, a potential side effect of the chemo, and which is breathed in the mouth through a nebulizer. Prior to the Pentamidine, he was also given Albuterol to inhale, which opens up his lung passages to make the Pentamidine more effective. We also discontinued the steroids that day, switching to hydrocortisone to allow his adrenal glands to wake up again. Avastin also helps work against the necrosis (tissue death) that radiation can cause. And, perhaps most hopefully, it may also work against the cancer itself as an "anti-angiogenic" agent: by killing the blood vessels that feed the cancer cells and, since Dylan has never tried it, the doctor is hopeful. Dylan got the Avastin as an I.V. outpatient once every two weeks, receiving a lower dose each time. Possible side effects are bleeding in the brain or urine, since it also affects other blood vessels; and it also makes him susceptible to infections, because of the lowered blood counts. So they checked his urine, blood pressure and blood counts every week. He did not have the third dose of Avastin as planned, because his platelet counts were extremely low, and he had protein in his urine from kidney damage. He also had elevated liver numbers, a result of the CCNU, but his liver was functioning normally, so he may have more after 6-8 weeks from taking it the first time. CCNU is a "classic" chemo, as old as the 1980s. It's oral, and does cause hair loss (although there is not much left to lose after radiation). He only takes one pill every 6-8 weeks, at home at night and, since it causes nausea, we gave him Zofran, an anti-nausea medicine, just prior to taking it and also a couple of times the next day.
An MRI on February 13, 2013 showed the tumors to have shrunk even further after two rounds of CCNU and Avastin. He will continue on these meds as long as his body will let him (the effects on his blood counts are cumulative, so this is not a permanent solution).
The oncologist did say there were a few small spots in the spine, but also that since we haven't scanned the spine in a while, it's hard to tell if these have been growing slowly or that they were worse before and now are also shrinking. Another MRI on May 3, 2013 was stable, with less edema around the residual tumors, great news.Final medications (list needed for hospice care info):
- Levothyroxine, 25 mcg, 1x in the a.m., for thyroid function, more energy
- Methylphenidate (Ritalin), 2.5 mg, 2 x in the a.m. and at noon, for more energy
- Levetiracetam (Keppra), 500 mg, 3x, a.m., noon, p.m., anti-seizure
- Milk Thistle, 250 mg, 3x, with Keppra, to protect liver
- Ondansetron (Zofran), 4mg, as needed for nausea
- Methadone, 1 ml, as needed for breakthrough pain
- Diazepam, 20 mg, as needed for breakthrough seizures
- Phenobarbital, 150 mg (300 mg loading dose), as needed for severe seizures
- Atropine, 2 drops under tongue for excessive secretions
We were about to look into a possible option of a Phase 1 trial in Houston of a similar vaccine approach to the one we did in Belgium, although using a different mechanism of the immune system. However, on May 18, Dylan suffered a seizure and apparent stroke that lasted for days. His condition progressively worsened, including hiccuping, vomiting, unconsciousness and fever. His breathing became labored and then congested; we gave him most of the medicines listed above, but his body couldn't take it any more and he finally breathed his last on May 22, 2013 at 5:20 a.m. In the words of his oncologist, who wrote these words to the entire medical team:Dear Colleagues:
With much sadness, I write to inform you that Dylan passed away at 5 this morning at home, after an extremely peaceful terminal decline since last Saturday. Dylan would have been 11 years old next Sunday.
He was initially diagnosed in July 2007 with disseminated anaplastic medulloblastoma.
Medical Team/Primary Doctors (in reverse order of our starting to work with them):
- Trinity Kids Care, Los Angeles (hospice/home care): Glen Komatsu
- Children's Hospital Los Angeles (neurosurgeon): Mark Krieger and Nathan Robison
- Dana-Farber/Harvard Cancer Center, Boston (hedgehog inhibitor study): Mark Kieran
- Children's Hospital Los Angeles (internal study): Ghirish Dhall
- UCLA (gamma knife): Antonio DeSalles
- University Hospital Gasthuisberg, Leuven, Belgium (vaccine therapy): Stefaan van Gool
- Sloan Kettering, New York, NY (intrathecal therapy study): Ira Dunkel and Kim Kramer
- UCLA (radiation therapy): Joseph Lasky and Michael Selch
- Children's Hospital Los Angeles (oncologist, chemotherapy): Jonathan Finlay
- Cedars Sinai, Beverly Hills (neurosurgeon): Moise Danielpour
- Tenth Street Pediatrics (pediatricians): Harvey Karp, Kara Natterson Familian, Lisa Stern, Jim Varga
- Mom, Dad and Chandler (continuous caregivers, nurses, huggers, readers, game players, serenaders, ministers, and lovers of Dylan: family: the best medicine)
Dylan, above, with Dr. Finlay at the doctor's 60th birthday party.
Over these last 6 years, Dylan, magnificently supported by his parents Jana and Eric, and his older brother, Chandler, bravely, with love and with humor, fought against his cancer every step of the way. Dylan never, ever complained of anything (except when he was hungry!) and had appropriately funny facial expressions and phrases for everyone on all occasions.Dylan will be sorely missed, not only by his devoted parents, brother and family, but by all of us who had the privilege of working with him and his family these last six years to try to overcome his dreadful cancer. He taught us a great deal, not only about his tumor, but about the inner strengths of little children overcoming adversity. Dylan has lost the battle for his life, but he most certainly won the battle for his dignity, his spirit and his soul.My personal thanks to all of you for your contributions to his care.Jonathan Finlay
May 26, 2002 - May 22, 2013
"Remember just to love"