We're riding in the Courage Classic

Hi friends,

This is Eli. Guess what everybody? There's a thing called the Courage Classic. Have you heard of it? It's where my Daddy rides his bike in the mountains. I am supposed to ask everyone to give money because my Daddy is riding his bike in the Courage Classic. You know what? All the money goes to The Children's Hospital, my hospital, where all my doctors are. It's a really long bike ride, like 3 thousand hundred twenty million miles, and Daddy has been riding his bike all the time. So much that he can't even walk some days. He's gonna ride for three days on twisty, turny roads, up and down mountains and then he will probably hurt a lot and say ouch when he walks.

I love my hospital and all the doctors there that help me feel better. Daddy says he is riding for me because he wants to help other kids who are sick too. Help him give something to the amazing place that has given me so much.

Please help The Children's Hospital by sponsoring him in this year's ride. Check out his page on the Courage Classic website and click the big green button to donate:

http://www.couragetours.com/2010/ridingforeli

Guess what else? I am going to ride in my trailer with Daddy, but he says only one day and only on the downhill parts.

Thanks,
ELI

Summertime

Hello everybody,

Sorry it's been so long since our last update. Everyone is happy and healthy, and the results of Eli's latest MRI were good news.

Eli is having a great summer: he loves his new summer school and his wonderful teachers and we are finally starting to take advantage the pool. We have been up to the mountains a few times and are really enjoying the beautiful Colorado summer. Eli is really getting into music, playing drums, singing and dancing. At the renaissance festival a few weeks ago Eli started chatting with one of the performers (the kid sure loves to talk) who invited him on stage, handed him the microphone and Eli started singing "Puff the Magic Dragon." It was hilariously cute and I am kicking myself for not getting it on video. One of Eli's favorite new things is his Hip-hop dance class. He loves hip-hop and always makes us stop on hip-hop songs on the radio. There are a couple of great youtube videos of some of the first moves he learned.

Eli's health is great (in many ways better than ever) and he seems to have completely recovered from the surgery. They seem to have gotten nearly all of the tumor. There is a little bit of tumor tissue left in the sella as shown in the picture below from his MRI on July 7. We are hopeful that this mass will remain stable for as long as possible to avoid radiation or another surgery until he is older. He'll have another MRI in October and hopefully everything will look exactly the same.

One unfortunate and potentially terrible consequence of the surgery was apparent shortly after the surgery and has been confirmed to us over the last 3 months. Eli appears to have what we are calling hypothalamic insatiety. One of the most common consequences of this surgery is damage to the hypothalamus which controls, among other things, appetite. Without this part of the brain to sense fullness, you are constantly hungry. Many of the people with this type of brain damage are unable to control their appetite and they become morbidly obese. For this reason the condition is usually referred to as hypothalamic obesity. We don't like this term because it implies that everyone with this type of damage becomes obese. We are optimistic that we can avoid this for Eli and so far things are going pretty well. We are being extremely vigilant and have him on a strict calorie restricted diet. Eli hasn't gained much weight so far and is still looking pretty slim. Hopefully the weight he has gained is related to him recovering from surgery and his increased stature (he's 2 1/2 inches taller than he was in november when he started growth hormone). As you might guess, the diet is pretty hard on Eli, I can't imagine how hard it must be to be hungry almost all the time. He is dealing with it remarkably well though, some days are great and some days are pretty hard. We are all getting better and better at dealing with this and maybe because Eli is so young the healthy eating habits we start now will keep him from becoming obese.

Have a great summer!

Sleeping like a baby - literaly.

I just wanted to give a quick update on how Eli is doing and share some pictures of him and his brain.

We got out of the ICU on sunday and are relaxing in a room that doesn't have windows on all three sides where you can watch the saddest things you've ever seen in your life. Eli is doing well: eating well (if you count ice cream as good food), walking around a bit, chatting with the doctors and SLEEPING. This kid is very tired, but can you blame him? He's sleeping like a baby. Just like a newborn. He sleeps, wakes up, eats, goes back to sleep.... The first couple of days he was actually even nursing in his sleep, which he hasn't done in well over a year. It was pretty cute. I guess maybe the trauma made him regress back a bit. I know when I get sick I'm a whiny little brat. Anyway, he's not quite the chipper Eli we usually see in the hospital after surgeries, he's just exhausted. He is however, getting better and stronger every day and we know that after such a major surgery it will take him alot longer to get back to his old self.

He has also developed a strange urge to create combinations with his food - he doesn't want red or orange jello, he wants red AND orange jello, together. We asked him the other night if he wanted some soup or some crackers or some jello or some chocolate pudding and he said "I want to dip crackers in pudding." So that's what he had to eat, saltines dipped in pudding.

Lastly, here's what Eli's post-surgery MRI looks like. Look mommy there's no tumor! The image on the left is from February, the one on the right is from saturday.

We are set to go home either tomorrow or thursday! Yay!!!

Post-Op Status: Where's ELMO!!!

Eli's surgery finished up at about 7:30 last night. The surgery went pretty well. No major problems or obstacles. The neurosurgeon believes he was able to remove most of the tumor. There is some residual, an unknown amount, just below the optic chiasm (see pictures). This is difficult to remove in a child due to the surgical approach that must be used. Removal of tumor in this area can lead to total vision loss and stroke. We will know on Monday after the MRI the extend of the residual/remaining tumor and what the next treatment steps will be.

When we first arrived in the recovery room, Eli was just waking up. I have him his favorite blankie and then he opened his eyes and in a gruff-whisper said "Elmo, I want Elmo." We could not have been happier than to hear those words! Odd as that may sound it was an indication to us that he was going to be okay! He remembered Elmo and remembered just how much he loves Elmo.

This morning, after a bit of a rough night sleep due to a little fever Eli told me "Mommy, my watch says I need to sleep more!" So there you have it! After a little orange and red jello ("orange it better") Eli went back off to sleep. He is moving all his fingers, toes arms and legs and counting fingers and reading "GET WELL" on a balloon.

So that's it for now. We will be in the PICU for the weekend to monitor his electrolytes and manage his pain.

We will keep you updated. Thank you for ALL the wishes, love and support. It is truly helping him recover.

Our love,
Always,
Meagan and Jacob

In this picture the #2 is the optic chiasm. In the picture above one can see how the optic nerve which crosses at the chiasm lies just above the tumor area.

TWO POSTS TODAY 4/2/10

In Surgery...

As I sit here typing our dear Eli is under the expert and caring hands of our wonderful neurosurgeon. In 6 hours we hope that the tumor is out and Eli is returned to us just as he went in. We know you are all thinking of him and sending lots of love.

Thank you,
Meagan and Jacob

Eli's New Road

Dear Friends and Family,

Eli is feeling very good, growing stronger and more nimble each day, making friends, running, jumping and playing more and more like a boy his age each day. He is doing better than ever. He has grown three inches in the last year and the growth hormone has visibly redistributed his mass from chubby baby fat into lean muscle.



Unfortunately, what we are seeing on the outside is not representative of what is going on inside, in his head. Eli's latest MRI shows that the solid portion of the tumor is beginning to fill up the hollow part of the cyst (at least from what we can see by MRI). Therefore, we can no longer continue to drain the cyst to make the tumor smaller because soon there will be little fluid to drain off. This leaves us in the position of having to remove the tumor earlier than we hoped. Eli will be having surgery to remove the tumor the beginning of April. Depending on how things look after his surgery, this may be followed by a 6 week radiation regimen to kill any tumor remaining after the surgery.

July 2009 (top) vs February 2010 (bottom):


We were very much hoping not to have to do this until Eli was considerably older, but unfortunately surgery appears to be the only option remaining at this point. Our entire reason for draining the cyst was to avoid surgery and radiation because of the potential to harm his little brain. Older kids and adults fair far better with radiation treatment so we think it is best to try to avoid it until we absolutely have to.

Clearly we are very unhappy about this turn of events. We have struggeled to seek other options and potential reasons and/or ways of dealing with these new complications. But from our review of the literature, speaking to others and seeing how these tumors are being treated around the world, there are no other good alternatives.

We know how strong and resilient Eli is. And we know how much he is loved. And this gives us great strength to know that he will rise above this challenge as he has the others.

Thank you as always, again and everyday for the thoughts and prayers that you send to Eli. We are ever greatful for your love and support.

If you would like to learn more about the treatment options and the potential side effects please read below.

So what are the complications of sugery vs radiation and the different combinations currently being used? There are many different treatment paths, but unfortunately, little data exists on what path is actually best (i.e. what path results is minimal additional morbidities (blindness, obesity, IQ drop etc) while also avoiding relaspe and tumor regrowth). Furthermore, what treatnment path is best most probably depends on the child's age, the size and relative location of the tumor and their current pre-tx deficits. For example, Eli has already lost vision in one eye and has no pituitary function. For some kids they are totally blind by the time the tumor is recognised or have other deficits. So, in my opinion, there are many considerations to be made when deciding the best care-plan.

Surgery Only vs Surgery and Radiation:
There are many who advocate to do an aggressive surgical resection and avoid radiation entirely. While others contend that a conservative resection followed by radiation treatment has a better outcome.

So what are they disagreeing on?
The complications commonly seen with a total resection are hypothalamic dysfunctions. This is because the tumor tends to grown little finger-like projections into the hypothalamus. In order to remove the tumor in total, portions of normal brain must also be removed. Now, sometimes the invasion is minimal - sometimes it is not.

So what is hypothalamic damage?
The most common type is called hypothalamic obesity. It results what a portion of the brain involved in satiety (hence called the satiety center) is damaged. This leads to uncontrollable eating. They child simply cannot stop. They always feel hungry and the overwhelming urge to eat is stronger than any power of conscious mind. This can be a very debilitating disease. It often results in multiple gastric-bypass surgeries and significant stigma and health problems. Damage to the hypothalamus can also damage the bodies ability to regulate body temperature. In other words, when you go for a run, sit in the sun or go to the sauna your body temperature rises. This temperature increase is received by your brain as a signal to turn on "cooling" responses. These are generally to sweat, open skin pores, cause increases in blood to the skins surface so that is can be cooled by its proximity to the out-side world etc. Conversely, when you play in the snow, swim in your favorite lake buck-naked or otherwise get cold, your brain senses this decrease in temperature and causes your skin pores to close, for you to shiver (yup that uncontrollable shaking-teeth-chattering-thing is cause by your brain is trying to get you to warm up by making you move) etc. So, if this temperature sensing center is damaged then your body doesn't know that you're overheating or freezing. It does not make the necessary physiological adjustments to regulate your body temperature. Clearly this can be a problem. Finally, damage to the hypothalamus that is seen due to cranio resections (just to clarify that there are many other areas of the hypothalamus that do a million other things) is rage control. Pretty simply your brain helps control you from throwing total tantrums and becoming mad with rage! Loss of this center can cause random temporary uncontrollable fits. Not so fun.

Well, what about radiation? What are its risk factors!
Most notable - in a YOUNG patient (i.e. this is not so much a problem if your over 15 and even a 7 year old suffer's less loss than a 3 year old) they will suffer some degree of IQ (memory, processing time, concentration, overall intelligence) drop. The drop may be so mild that it is not apparent. It also may be more severe such that the child has problems learning new tasks, remembering new information etc.
The second problem that is seen more when cranio's are irradiated it vasculopathies (that's fancy for problems with the blood vessels in the brain). These can be short term or not cause any problems for 40 years!
Finally, subsequent tumors! As with many treatments for cancer. What we use to treat them can also induce additional tumors! Shitty huh!

So that's it more or less!!! We hope that Eli will not suffer any of these fates. That his tumor will be easily resectable and the removal will not cause any damage and he will never need radiation. As with all children - we wish him to have the fullest life. Be happy and eventually healthy. Sometimes the best path to attain these outcomes is uncertain - not only for parents, but even from the best minds in the field.

Thanks for listening. We hope this information is helpful.
Meagan

Pictures and 2 New Blog Posts: "Growing Like a Beanstalk" and "Reflections: One Year With a Brain Tumor."

Spelling better than Mommy at age 3!

Eli Plays Doctor! "TIme for YOUR medicine Daddy."

Growing Like a Beanstalk!

It's truly amazing - what pharmacological enhancement can do! Better than eating your lima beans and broccoli - and arguably less painful and nauseating. Eli started on growth hormone injections just over 2 months ago and he growing like a beanstalk! The cute little gap-jeans that have fit him for the past 2 years are finally looking like capri's (or waders - take your pick).

Beyond the height (Jacob and I argue that it is between 1/2 to 1 inch: yes, of course we argue over 1/2 an inch!), Eli's body composition has also changed. Without growth hormone for the past year and a half Eli's little belly had become a pudgy-dimpling little thing (yup-like cellulite!) and his arms and legs lacked any significant muscle mass. But since starting growth hormone his belly is nearly gone, no more dimples, and he has started to get stronger and stronger as he builds lean muscle mass. It is really remarkable how rapid the change has been. I wish that I taken "before" and "after" pictures!!!

While we are very excited I don't think Eli has totally caught on! We have set up a little measuring "station" on the kitchen wall. Eli has measured all his stuffed animals, his trains, his belly-button, even his blanket has a place on the wall. He knows that the shots are going to help him grow big and strong, but he's not sure it's worth the 15 seconds of pain every night! He is amazing about getting his shots: He chooses which leg he wants the injection and then says "Okay, I'll take my shot, but I'm not going to like it!" Sometimes we don't know whether to laugh or cry. After each shot Eli places a sticker in a little calendar book. He loves stickers and it helps to give him some purpose and control over the situation. He likes to see how many stickers he has accrued!

We have an appointment with endocrinology next month and we will get an official height check! For now it looks like Eli is about 35.5". We'll give you all an official report after our appointment.

That's it for now!
Our best to you and yours...and don't forget to eat your spinach (because we all can't get growth hormone prescriptions and I'd rather get a shot every night than have to eat lima beans or broccoli!)...yuck!!!

Meagan

ps check out Eli's newest videos on youtube:
http://www.youtube.com/user/goldngump

Reflections: One Year With a Brain Tumor

This January 2nd marked the one year anniversary of Eli's diagnosis with a craniopharyngioma. Thinking back on that fateful day it is hard to believe that it has already been one year. Some of the memories are so clear still, so close to the surface I can still feel them, still see them as if they happened just yesterday. On the other hand, we have become so accustomed to the routine, to the daily meds, the shots, the many doctors visits that they fade into the background and seem insignificant. Brain tumor life has almost become normal life. I say almost, because I don't know if it will ever really seem normal.

Thinking about it all, I believe I should have some new perspective, some wisdom, some insight to offer about life with cancer in this New Year...but I don't. While I have learned so much about medicine, about the resilience of my son, the strength of my marriage, the amazing support of my friends and family, my perspective, my insight into the world, into "reality" has not changed. Granted, I have learned an immense amount about myself, my need for control, my ability to forgive, my desire to repair, my quest to educate - but these traits have always been present, they just became pronounced.

Cancer has not given me a "golden light" with which to view the world. It has not provided me with some new-enlightened perspective or zen-like take on life. I have not found God nor rejected him. However, it has been brought to my attention that what has happened to me is something much more human (to borrow a term bestowed upon me by another); I have become a "warrior." Strong, tenacious, arduously studious, strategic, courageous, forgiving, determined, methodical, demanding, cautious, aggressive, diligent, precise, loyal and merciful. These traits can be used for beneficence as well as maleficence. They have both positive and negative attributes. Sometimes they make me proud, other times they make me cry. Others who face tough-life-altering changes will respond differently - some will find enlightenment, others the infinite blessings of the world, others total darkness.

Eli's diagnosis the day after the New Year allows for a unique opportunity to reflect. Over the years I imagine my beliefs and reflections will change. It will be interesting to compare this year's thoughts with next years. So until then I have an entire year to make resolutions and watch my child grow and prosper - for which I am ever thankful.

Thanks for listening,
Meagan