Gearing up for next phase of treatment

Many people are constantly asking me if I have posted lately. There is a feature on the blog to follow us, and it will send you an email when I post. If you have problems finding it, please let me know and I will help you.  You do need have a google email account I believe.

It's been close to a month since Noah has finished chemo, and it's been a nice break not having to run back and forth to the hospital and blood draws, etc. We had an amazing week in Lake Arrowhead with many friends and family, and it was an absolute joy to see Noah so happy. He spent a lot of time with his cousins from New York who he adores, and had a lot of quality time with Eli and Simon which was so wonderful to see. It was like he was back to himself again. He was running around like every other kid. Boating, arts and crafts, capture the flag, soccer, games, archery, etc.  The only thing he didn't do was swim.  We know it's because of his hair loss, which makes us so sad that he feels that way, but it made him uncomfortable so we didn't say a word. He even ate like any growing 10 year old boy, and I think he must have put on at least 3-4 lbs. from the 10-12 he lost during treatment. He has an appetite for destruction and it is very fun to feed him because he is a gourmet kid. He can't get enough salmon.  He can eat it all day long. Smoked, roasted, bbq, poached....it's so interesting. His body just craves it. 

Along with the week of bliss for him, came endless stress for Adam and I for a variety of reasons, mainly his upcoming brain surgery and finding the right surgeon for the job. His tumor is in the pineal gland of the brain which regulates the circadian rhythm. Tumors in this area of the brain are extremely rare. Top surgeons around the country only remove 6-10 per year, which is really very minimal.  We have amazing friends and contacts that helped us to get appointments with top doctors across the state for their opinions. Each surgeon has their own approach and technique, and it is hard to determine what's the best option. In the end, we decided that the surgery is part art form, and the technique they used was less important than the surgeon. We are so thankful to have had so many amazing choices. These surgeons are brilliantly skilled people with many many years of training at top institutions in the country. We felt so lucky to have so many great options. 

The surgery will be 6-10 hours long. He will have a craniotomy which is something we were hoping to avoid, and find someone with a less invasive technique. Unfortunately, the location of the tumor is smack in the middle of the brain, so a full craniotomy is our only option. It will take the surgeon 90 min to even get to that part of the brain, and then the removal of the actual tumor could take up to 4 hours. In total, he will likely be in surgery 8-10 hours. It will be a very long day. The risks are many. If everything goes perfect, he will still likely have some lifelong side effects, though they may be minimal.  We expect that he will have double vision immediately post-operative.  He will come home with a patch over one eye, and within 4-6 weeks, most of the double vision should subside.  It will probably be something lifelong, though only noticeable to him when he is extremely tired or has to really stretch his vision.  Most parents whose children have had the same surgery that I have been in contact with report that their kids bare notice it, and it really does not affect them.  The other possibility is some loss of coordination.  I believe he said this was only in 25% of cases, and with physical therapy most of that will go away.  Then, of course, there are major risks like stroke and paralysis, however, we have the utmost confidence in this surgeon that things will go as they should, and we are hoping for the best possilbe outcome.  His surgery will be at UCSF on Wednesday, August 16th.  Two weeks later, we will return to Boston to get him set up once again for radiation, and it should begin the 2nd week of September if everything goes smoothly.

Eli and Simon start school tomorrow, and I know it will be very difficult for Noah. He is one of those kids who just loved school, and truly defined himself as a student. I know he wishes more than anything that he too could go back tomorrow and feel like every other 10 year old he knows.    As time has gone by, he has become more and more attached to me, and less interested in seeing his friends.  We don't think he is depressed, and his attitude is just incredible.  He doesn't feel sorry for himself, but he just seems to feel most comfortable around family and some very close friends that are kind of like cousins.  My biggest hope for him is that he too can return to school as soon as he is done with radiation, but we will just have to see how he feels.  One thing we have learned through all this is that you can't plan too far ahead.

I will post after his surgery to let everyone know how he is doing.

Some pics from the last month

 Eli and Noah at the car museum in LA.  We went to meet with some doctors and were able to get some fun in.  Car museum, fun with cousisn, and even a trip to Universal Studios

 Our annual trip to Bruin Woods.  This was the first day.  He was so happy all week.

 Some of our Bruin Cheerleaders.  These were some of Noah's counselors during the week.  They made him feel like a "king" and awarded him the "warrior" award.  He was so happy.

A trip to Universal Studios in between many doctor appointments in LA.  His very best friend in the whole world came as well!!!  He has flown to Northern California 3 times to see him and it gives him a major boost each time.  We love you Noah Barme.