Hey everybody it's Eli, mommy let me on the computer to tell you all something incredible! Guess what!?! (Yes I still use this phrase way too often!!!) My dad is once again riding in the Courage Classic. My awesome daddy will “suffer” through 3 days of mountain passes, conquering over 150 miles of asphalt to honor ME and all the shots, blood draws, bad tasting medicine and sleepless nights I have spent in the hospital. He is also riding to help raise money for my wonderful hospital so that they can continue to help me and other little kids who are sick. Because I am so loved, my Papa (my mommy’s dad) and 3 of my daddy’s friends will also be riding in the Courage Classic. My daddy is really happy that he won’t have to ride alone this year and I’m really excited to cheer everyone on to the finish line. If you would like to help honor me, support my daddy, my hospital, my doctors and all the other children whose lives are forever changed by the care they get at the Children’s Hospital then please follow the link below and donate to my Daddy’s ride! I will be sure to smile big with my family and all the people riding for me on the last day and send you a huge thank you hug!
Please donate today by clicking the link below!
As most of you know, we have done nearly everything to avoid using radiation to treat/cure Eli's tumor. While it is "THE" definitive treatment, with a very high cure rate it also has very terrible and lifelong side effects and consequences. Unlike many parents we have been lucky to have the option to try other treatment options as Eli's tumor was not directly risking his life. After all prior attempts failed, Eli had surgery to remove the tumor in April 2010. We told our neurosurgeon "take out ALL the tumor, WITHOUT touching the hypothalamus and give us back our boy just as he went in!!!" Well, even miracle working neurosurgeons have limits and such a resection was not possible.
In late October, Eli had his 2nd scan following the brain tumor resection. At that time we learned that Eli’s tumor was starting to grow back, but just a little. We were very sad to hear this news but at the same time expected that eventually he would have to have radiation. Although we had hoped to avoid radiation altogether, the neurosurgeon was not able to remove all the tumor mass without causing significant damage to Eli’s optic nerves (vision) and hypothalamus (too many complications to mention! Of the potential consequences Eli had damage to the center that regulates metabolism and hunger, causing him to have a massive drop in his metabolic rate and constant hunger referred to as hyperphagia. Damage to this center usually leads to morbid obesity. More of this will be discussed in future posts). The neuro-oncologist said that Eli would likely need radiation within the next 12 months. Although we were sad we figured we had some time to spare before Eli would need radiation treatment. We also kinda new that I was about 3 weeks pregnant!!! The "plan" was to wait as long as possible to do the radiation, but also know that by the time the baby came Eli would likely need radiation. Being the planner-control freak that I am I said “Okay, I’ll have the baby in July and Eli can have his radiation in August and then I can take time off for both of them at the same time and it will all work out well and I can finish my 3rd year of medical school and then have time to be home with my kids!” Yeah! Like all of life’s best laid plans…failure!
Three months later, just after the New Year, Eli had his 3rd MRI. The tumor had now doubled in size and was rapidly growing. The growth we had seen on the scan in October was only a very small change. This was a drastic change, undeniable to all. In fact it appeared as though the tumor had exploded overnight. It was so large, we were worried that he would have to have another surgery BEFORE we could even do the radiation. Fortunately, the consensus was that he would only need radiation, but the radiation would need to begin immediately. So, contrary to my prior “plans”, we began radiation on February 14th.
I took off from school and Eli and I went to radiation every morning, Monday through Friday for 6 weeks. Because he is still so little and because he had to be perfectly still for the radiation AND because he had to be strapped in and wear this insane mask for each radiation treatment, Eli had to be put to sleep for each treatment session. This meant that each morning he had to go without breakfast (which is really hard for a kid with hyperphagia) and be put to sleep with propofol by the anesthesiologist, everyday. He had a “button” or PICC line which is like a semi-permanent IV for the “sleeping medicine.” Eli did an amazing job. Every morning we would bring one of his favorite CD’s and we would put it in the little CD player they had in the room. Eli would choose a song and then dance and sing for a few minutes before coming to sit in my lap to be put to sleep. On many days he would still be singing as he went off to sleep. It was a very interesting experience for all parties involved…watching this beautiful child handle this stressful situation with so much resolve and calm. It was touching and sad and inspiring all at the same time.
Eli had minimal side effects during radiation, including hair loss and fatigue. The minimal fatigue lasted for about 2 weeks after radiation ended and then he started to act like himself again. He had one small cold during treatment, which he promptly passed on to me. Otherwise, it was very uneventful. Then about 5 weeks after radiation ended things changed. We were called by his Waldorf school teacher who told us that he had fallen asleep at school in the middle of the playroom. Over the next 1-2 weeks he seemed to sleep all the time. He would take a 3 hour nap in the morning and then 3 more hours in the afternoon. He also seemed to be very down and sad. He also started to complain that his stomach hurt. Concerned that his VP shunt was failing we took him to the neuro-oncologist. To top it off he puked all over the oncologist (or his exam table) and everyone was sure that his shunt had indeed failed! Fortunately, the MRI showed it was working just fine!!! It was determined that he must have a condition called “post-radiation somnolence.” His “somnolence” lasted about 4 weeks. At one point I was sure we were going to need to start Eli on some antidepressants…or I was going to need them! He was just so miserable and tired. The little boy who would talk non-stop while he played stopped talking. The little boy who loved to dance, never asked for his hip-hop music. He stopped talking to all his “friends” (stuffed animals) and sat quietly to the side at school while the other children played and sang. It was a very difficult time at our house and we were so relieved the day he spontaneously started singing again.
If you have read our prior posts then you are familiar with the more devastating and serious side effects of radiation including its effects on IQ (processesing speed, memory and attention) vision, future risk for malignant brain tumors and vasculopathies (blood vessel problems). Eli will be followed every 6 months and then yearly for the rest of his life with MRI’s to check for signs of malignant tumors, vessel problems and to ensure that the primary craniopharyngioma tumor does not return. It is rare for craniopharyngioma’s to be resistant to radiation, but they have been known to recur 20-25 years after treatment.
Of greater concern, because it is much more likely and more treatable is any change in his cognition, behavior or vision. Eli will be followed by the neuropsychology department at Children’s Hospital yearly to assess changes in his cognition. Unfortunately, because of his age it is difficult to test him and therefore difficult to discern changes. Therefore, it will take years to really assess what changes if any occurred to his intelligence.
A New Focus:
The next months to years will likely be a very different experience for us and Eli. Instead of focusing on treating and killing the tumor, we will now be turning our focus almost entirely to managing the sequalae of the tumor as well as the side effects of radiation, surgery and the other treatments. The consequences of the tumor we will follow include: managing his endocrine disorders (hormonal deficiencies including thyroid, growth hormone, anti-diuretic hormone, sex hormones and hyperphagia) to ensure he grows properly and that his weight and diet are controlled to prevent the morbid obesity that is so common among kids with cranio's. Special attention will be given to his eyesight. He will start wearing glasses to help his vision but mainly for protection of his one "good" eye. We will also start vision therapy in the coming years to help him use his eyes together (so he looks less goofy!) as well as teach him how to use his limited vision more completely by moving his eye and head to get greater peripheral vision. He will continue and likely intensify his physical and occupational therapy sessions to help him improve his running, stair climbing, ability to draw and write letters and dress/wash himself etc. He will get help with his cognitive and visual reasoning and we will continue to see specialists to help us understand and treat his bone/orthopedic needs and his digestive and stomach problems. Most of these issues will be lifelong concerns, so it will be important for Eli to establish good habits, continue to work with great doctors and get as much support as he can early on to minimize any deficiencies and teach him ways to compensate. We look forward to focusing on the issues that will be central to Eli's life and helping him reach his highest potential, finding and encouraging him in the things he loves most, like music and dancing!
OUR YEAR: FUN FAMILY EVENTS
Colorado Avalanche Better Halves Charity Brunch: Eli was invited to "strut his stuff" on the runway in this fashion show put on by the Avalanche girlfriends and wives to support Children's Hospital! Eli got to walk and dance with his favorite Ave's player David Jones - who also happens to be my parents neighbor. Eli had a great time meeting all the players, but the highlights were chatting it up with the "sweet girls" (aka the girlfriends and wives of the players) and dancing on stage! Oh and meeting Bernie the Ave's mascot!!
American Cancer Society Relay for Life Event - La Plata County, CO:
Jacob, who is the recipient of an ACS fellowship was asked to come and speak at this event. It was a great day demonstrating all the amazing work done by people around the country and even in the small rural areas of Colorado who do so much throughout the year to raise money for cancer research. It was an uplifting event for Jacob, as all the people were so thankful for the work he does. It was also a very emotional day, hearing the stories of cancer survivors and loved ones taken by cancer. After more than 10 years on cancer research, Jacob's research now has a personal connection, making these events even more important and heart-wrenching.
Eli's First Hip-Hop/Break-dancing Performance:
Eli has been taking break-dancing or hip-hop classes for the past year. It has been amazing for him. The owner of the dance company Motion Underground is Kenny. He has been instrumental in helping Eli become more comfortable in his body, helping him learn to jump and promoting the natural rhythm Eli has. It has been wonderful watching Eli learn to move his body while also enjoying movement. Eli still has a LONG way to go in terms of his motor development but we are sure that dancing will be a great vehicle and something he will always love.
Water Play: It seems that Eli is happiest playing NEAR the water...whether its the beach, the pool, the hot springs, hikes over rivers, or fountains. Eli loves to splash around. The BEACH definitely takes the tops as there's SAND!!! Here are some pictures from last summer's trip to the Hampton's with mommy's family and to the Glenwood Hot-Springs as well as this years trip to the hot-springs near Durango, Co, hikes and other days!
