Day of Surgery

I havent really had a chance to sit down and spend the time I have needed to update the blog.  This week has been solely focused on Noah's recovery and trying to be with Eli and Simon as much as possible.  It has been a very long, exhausting week for all of us, and we are starting to come out the other side.

We left for the surgery last Wednesday around 6am, and headed to UCSF medical center for Noah's surgery.  He actually came into our room at 4am, and wondered when it was time to go.  It was the first time in a while he had shown any anxiety about the surgery.  He crawled in our bed, and stayed with us until it was time to go.  I didn't want to get out of the bed.  I just wanted to stay there with him cuddled up next to us because I knew in some way his life was going to be different after the surgery, I just wasn't sure how.  But the thought of it had kept me awake for the 3 weeks prior since I found out he was going to have to do this.  In fact many nights, I would crawl into his bed after he had gone to sleep, just to breathe him in.  I just couldn't believe he was going to have to go through with this.  Meanwhile, he was super brave as usual, never once mentioning to me how afraid he was.  He sat through all of our meetings with doctors, had heard much of the possible side effects, and still never once flinched or said he didn't want the surgery.  He is a warrior.

6am finally arrived, and it was time to leave.  We loaded up the car, and headed out the door.  We were all anxious of course, and I wanted the car ride to be as slow as possible.  When we arrived at the hospital, they checked us in very quickly, and we headed to pre-op.  Things went as smoothly as they could.  Blood pressure check.  Fever, none.  Height and weight, check.  We met the operating nurse, the anesthesiologist, the resident, our neurosurgeon.  We signed papers which felt like signing our lives away, and by 8:30am it was time to take him in.  He was given the choice to have his port accessed first and put the medecine through there to fall asleep, or to get some gas and then they would access him.  He chose the gas, and I wondered how he would deal with that, since he was relatively comforatable getting his port accessed and then have the anasthesia administered through it.

They said one of us could be with him until he fell asleep, and he asked for me to go.  As we walked down the hall to the OR, he started crying.  He was so afraid.  It felt like the longest walk ever.  I wanted to just keep walking on out of there.  I just didn't know what the outcome would be.  He was so anxious, and it was all starting to come out.  We got to the OR, and he laid on the table.  They showed him the mask, and he started to freak out.  He was hysterical.  He didn't like the smell.  He didn't like the feeling.  He was stalling, and I was just fine with it.  The anesthesiologist cradled his head like a baby, assured him he was safe, and held the mask there until he went to sleep.  I stayed until he was totally asleep, and then walked out.  The clock began.  I was dreading this day.

The nurse escorted me down the hall, and I went to find Adam.  He was going to have an MRI before the surgery began, and then they would begin around 9am.  They said they would update us every few hours, so we went downstairs to get something to eat.  They called at 9 to tell us he was entering the OR, and would call with an update when the surgery began.  We didn't hear from them until 10:45am to let us know they were beginning.  Thats how long it takes to set up for this kind of surgery.  He was face down on a table because they enter the brain through the back of the head.  They must secure his head with some kind of apparatus.  In fact, when he came out of surgery he had 3 little holes, 2 near his forehead and one on the side.  These were pins they used to secure his head.

We didn't get another call until 12:30 to let us know they had reached the tumor and they were beginning the resection.  It takes almost 2 hours to reach that part of the brain.  Actually, once they separate out the muscles in the back of the neck, they retract the brain to the side, and can get a clear entry to the pineal region without cutting anything.  It is one of the most difficult areas to reach in the brain, as it is smack in the middle.  He told us it would take between 1.5- 4 hours to get the tumor depending how stuck it was to the varioius areas.  They called about 2 hours later to let us know everything was going well and they were still resecting the tumor.  By 3:30pm my patience was weaning and I wanted this to be over.  Thankfully, we had lots of friends and family there to pass the time, and at this point I was counting every second.  They called around 4:30, close to 4 hours after they began resecting the tumor, and told us they had removed the entire thing, and were preparing to close up.  We were so happy and relieved.  It was the first full breath I had taken all day.

It took about another 1.5 hours to close him up, and then he had a final MRI to make sure they got everything. The doctor came out to speak with us, and told us that the surgery went as well as it could, and he was quite pleased.  I told him I felt like kissing him.  He was pretty funny, and told me a handshake would be just fine, and I should kiss my husband.   Around 6:45 pm, he was out of the operating room, and in ICU, and within 30 minutes starting to stir and wake up.  He woke up around 7:15, and the first thing he said was, "will my body work the same?"  We were overcome with joy.  His brain was working just fine, though I realized we will need to help him psychologically for months to come.  He clearly wasn't sharing much of his fears, and they were real.

That evening went as well as one could expect.  He was so darling when he was waking up.  I think he must have felt so happy his brain was working just fine.  He was asking the nurse about everything he could, just as he usually does, and once again he could run all of the equipment had he needed to.  He was in quite a bit of pain as soon as the anasthesia wore off, but once they got the right dose of pain meds, he was ok.  He was extremely thirsty, and I kept feeding him ice chips, but he really couldn't hold anything down.  Ice chips, then throwing up.  More ice chips, more throw up.  He had a pretty rough night, but by the morning, he had stopped throwing up, and we he was able to hold down a little ginger ale.

His vision seems to be the only thing affected so far.  He has double vision, and at first he kind of looked like a deer in headlights.  In the ICU, he put on a patch rather quickly and kept reading us the time, down to the second, and I'm sure this was his way to make sure he could still see.  He was also calculating how many seconds and minutes until something else would happen, which was another way he was assuring himself that his brain was working just fine.  Which it was, and we were super thankful for.  So far, he is unable to look up.  He can look to the sides and in front of him, and is having trouble focusing, but all of this should improve with time.  Probably over the next 3-6 weeks he will have a marked improvement.  Swelling in the brain needs to go down, and his brain needs to recover from the trauma.

10 hours of surgery - total success

Thank you for all of your prayers and love and support today.  We felt so incredibly supported and can't convey enough to everyone how much we appreciate it.  Noah is awake and the surgery was extremely successful. Our incredibly talented surgeon got the entire tumor without leaving an ounce.  He worked diligently for 10 straight hours. 

Noah needs a lot of attention right now, but I will post more tomorrow. 

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.