The first day after surgery was truly better than expected. He had vomited quite a bit the night before, and though he was asking for food a drink, he really couldn't hold anything down. After they were able to get his pain under control, we just couldn't believe how well he tolerated the surgery. He did refuse to move his neck or body for that matter, but his spirits were up, and I'm sure some it was just pure relief that everything was working well. He even told the doctor he loved having the catheter in place, which was an absolute first for the physician. They like to remove the catheters as soon as possible to limit the risk of infection. Plus, getting it out forces the patient to move around a little more. I am certain Noah understood this perfectly, and would have rather risked infection than having to move his very sore neck and head. So, he won, and they kept it in for an extra 24 hours.
The nursing shifts at UCSF are 12 hours long each so you only have 2 nurses per day, which I think is very positive for the patient. At Oakland, the shifts are 8 hours each, so just when you're settling into the person, they change shifts. We were also very fortunate to have 2 male nurses. I never realized how important nurse gender was to Noah. He relates to the male nurses so much better, feels more comfortable with his body, and frankly is so much more cooperative with them. Our 2 nurses in the ICU were both kind of cool, hip, in their late 20's men, and they truly contributed to his sense of well being. It really was a different dynamic than a female nurse is for him, and I can't stress the value of having men in the nursing field. I am more and more appreciative all the time.
By Friday evening, which was about 48 hours after the surgery, we were transferred to a transitional unit where he would stay until we were released. It is here that things took a turn for the worse, and brought us back to "Roid Rage" all over again. From about Friday evening until Monday afternoon, the steroids they gave him to keep the swelling in the brain down, really started to affect him negatively. We had been through this before so it was not as frightening, but it was still very difficult to watch him suffer so greatly. He was totally paranoid about his IV lines and his port. He had IV lines in each arm crease, and they were also using his port to deliver meds and fluids. He really wasn't able to see that well which I am sure contributed to the problem, but if someone got within 5 feet of him, he'd scream "don't touch me, don't touch my IV, don't touch my port." He was super agitated, and very combative to the nurses. He refused to eat, drink, or even have his leg rubbed. He was miserable. They tried various meds to keep him a little calmer, but they sedated him too much, and that was unacceptable to him, so he refused the medication as well.
We felt very lucky to have the family support during this time. In addition to our parents who have been at our side since the beginiing, Adam's aunt came to stay with Eli and Simon for the week, and also brought her daughter who is Simon's age. They were so well taken care of and loved, we will never forget how much she helped us. She brought the kids to the hospital a few days in a row, and even brought friends as well. Unfortunately, Noah was either too sleepy or too agitated to engage, but I know how much it meant to Eli especially to be there, even it was for a few min. By Monday, the steroids had begun tapering off, and we could see he was returning back to normal. It was a very long 5 days, but we were starting to see the light at the end of the tunnel. The physical therapist came and was able to get him off the bed, albeit screaming and shouting at her, but he did it. And we know its this fighting spirit that has made him so strong throughout. By Tuesday, the doctor told us there was no medical reason he needed to be here anymore, but that he had to be able to walk on his own, and eat. As soon as he heard that, the light went on!! He said to send in the physical therapist, and he ordered a huge plate of food.
When she arrived he used all of his might and strength to pull himself out of that bed and walk a little down the hall. He made it about 20 feet to a a little step which was another ticket out of the hospital. He climbed that step with all his might, took a rest in a chair, and then headed back. She said it was sufficient, and I assured her we could manage him at home. She gave us the green light and we were out of there. Very happily I must say.
Wednesday, September 14, 2016
Boston Round 2 and Baseball
We returned to Boston the last week of August, just 10 days after brain surgery, to get him set up for the radiation. We spent 3 days there, mostly in the hospital; neurology appointments, oncology appointments, social workers, labs drawn, CT scans, and MRIs. Most everything routine except for one thing. Because he needs to be perfectly still for the radiation, they make a custom mask that attaches to the table so he is immobilized. I had been having nightmares about it for 2 months, just thinking about the idea. And because they need to radiate his entire brain and spine, he also needs to be still for 45 min to an hour each day. He needs 30 radiation treatments, and then we are praying that this is the end of his cancer therapies. He will go for radiation 5 days per week for 6 weeks straight. He is receiving a special kind of radiation called proton radiation. The hope is that it will spare the healthy tissue and target just the area that needs to be treated. This is what makes proton radiation unique. It is extremely precise and spares the healthy tissue. This is why we came all the way across the country to get it done. Boston had the first machine in the country, and they have the most experience. There are only about 15 machines nationwide, many of which are very new.
Most kids who are 10 are unable to be immobilized for such a long period, so they must be sedated via general anesthesia every day for their therapy. This obviously comes with its own risks and annoyances, and he was determined not to need anesthesia. We had talked about this mask for weeks, and what it would be like, and even looked at pictures online often. He was 100% sure he could do this, and was as prepared as one could be.
The man at Mass General Hospital in Boston who makes the masks is named Jim, and he has been doing his job or some form of it for over 30 years. He was absolutely wonderful and was extremely patient with Noah's millions of questions. And I mean millions!! In fact, he said in 30 years, he had never had so many questions. This was not unusual to hear, as Noah needs to know everything. He has always been like that. He not only craves information, I think its also soothing for him. Jim explained the entire process to Noah, and even gave him a little piece of plastic to practice with. They basically start with a piece of hard plastic that has holes in it and then heat it in some kind of solution so it is malleable. With Noah laid down on a table, 3 men placed the now soft plastic over his entire head and part of his chest, and mold it as close as they can to the contours on his face until it hardens. The whole process from start to finish took about 10 min. They then attach the mask to the table and that is the position he must stay in while his radiation takes place.
With the new custom mask in hand, we headed to the CT scanner where they would take many images to build the software needed for his radiation. Its amazing to me how many people are involved and how many jobs that are involved for this one patient. A physicist decides where the beams should go, x-ray technicians, CT scanner techs, nurses, even specialized proton radiation techs. When we arrived to the CT room, they needed to put some dye into his veins called contrast dye. He has done that numerous times before for his MRIs, but this time was an absolute disaster. Ever since his surgery, he has had a hang up and a complex about his port, and he refused to allow them to access it. Instead, he wanted them to insert the contrast dye through his IV. We had the skin on both of his arms numb so they could decide which was the best vein. However due to the IVs in his arm for so long from surgery, they couldn't get the IV in the vein. I had to ask for a different nurse thinking maybe it was her technique, but when the second nurse came in to try the other arm, she too had no luck. He was screaming at them, at me, at everyone, and eventually we said stop. It was enough. After calming down, he said they could do the part of the CT scan that didn't require the contrast dye, but he refused any more poking, which was perfectly acceptable to me. They loaded him up onto the table, put his mask on, attached him to the table, and he was able to lay there perfectly still for 30 min. He passed the test. He would not need anesthesia.
There was one more thing that needed to be done, and I wasn't about to tell him. They needed to make 2 small tattoo marks on his stomach so that when he comes in for radiation each day, he would be perfectly lined up. I suggested to the nurse that they tell him they needed to make a mark on his skin to make sure he is in the same place every day. I also told her it would be best to have 2 people at the same time make the marks because they were going to get one chance. He'd never let them do it twice. So thats exactly what happened. 2 nurses, simultaneously, gave him the little tattoos which at the end of the day was just a little pinprick. He was angry, hysterical, and screaming once again, but it was over.
At this point, I myself could have used some sedation. It was an extremely stressful day, and I was ready to go home. I am 100% convinced that if it were me, and I had to be attached to the table, I need to be in a psych ward or a straight jacket. It is claustrophobic, scary, and he made me so proud, once again. He is a strong, incredible human being, and we all admire him.
We headed home that night, knowing we had a very exciting day the next day. He was going to throw the first pitch at the Oakland A's baseball game. September is pediatric cancer awareness month, and many teams across the nation, honor the kids in various ways. He was asked to throw the first pitch and nothing was going to stop him. It was a perfect way to end a not so perfect week, and he was super excited. We were all excited for him.
Adam surprised him us a party bus, and we had our close friends join us on the bus. It was a so fun. The party bus had strobe lights, and tons of music and the kids just loved it. We got to the game a little early, and Noah headed straight to the field to meet the players and get ready. It was his moment to shine and he stole the spotlight. He threw the pitch from the mound all the way to the plate. He was up on the screen, and the announcer was talking about his journey. We cried. We were so proud. It was his moment to shine, and shine he did. We couldn't believe it. Just 15 days out from major brain surgery, and there he was standing proud. He is truly a warrior or our hero.
This was a practice piece to feel what the warm mask was going to feel like. He seemed to like it.
This took about 5-10 min. They placed the mask on his head and molded it to his face. Then, we waited for it to harden.
This is a CT scanner. With the images, they are able to design the software needed specific to his treatment.
This is the mask with him attached to the table. The green lasers allow them to line him up in the same place daily
First Pitch!! Rock Star
Noah with Catcher Stephen Vogt. He was incredibly motivating and kind.
Some Pics
This is how the mask starts out. Hard plastic that then gets heated to mold to face
Tuesday, August 23, 2016
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.
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.
Wednesday, August 17, 2016
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.
Sunday, August 14, 2016
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.
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
Saturday, July 30, 2016
SFO - BOS - SFO
I am sitting in the airport right now as I write this post. We are headed to UCLA family camp, a place where we have been going for the past 6 years. It is like a haven for the kids, and Noah has been hoping and crossing his fingers we could go for the past 3 months. He has successfully finished his 6 rounds of chemo, and we get to take a break from cancer for the next week to be with old and new friends, family, and most important to him, his cousins. We are so happy this is able to happen, knowing what's ahead for him. I am hoping he will participate like any other 10 year old, fishing, swimming, tennis, etc. and forget about blood draws, MRI's, spinal taps, exams, chemo, and everything else that has become part of this new normal.
We have noticed he has become a little more clingy to us. He really doesn't seem to want to go to friend's houses, and when kids come to our house, he kind of hangs out in the background. Although we don't think he is depressed, he just seems to want to be nearer to us and to home. He did have one incident that we know about that was absolutely heartbreaking, and I know it scarred him slightly. We sent him to an art camp last month for 3 hours each morning, with 2 very close friends. Towards the end of the week, some of the kids asked him why he was always wearing a cap, and he didn't really respond. Apparently, a 10 year old girl came from behind him and took off his cap. He was totally humiliated. The friends he was with gave the girl hell, supported him, and everyone seemed to move on, but I know deep down it left him scarred and a little more aware of his appearance. It infuriated us, left us so sad that he has to deal with stuff like that on top of everything he is going through, and has left us to protect him even more. I have dreams of revenge. Of course nothing substantial, but I'd love to have a word with that girl.
We took him to Boston this week to get him set up for radiation. The plan was to have an MRI, a CT scan, and simulations of the radiation so they could build the software necessary to obliterate the tumor. Then, we were to return to Boston on August 15th to start radiation for 6 weeks. I guess the best laid out plans are never as you expect them. He spent 3 hours in the MRI machine, which by the way is absolutely torturous no matter what age you are, and he handles it better than I could. His head must be secured in a cage like device so it is still, and then his body is buckled into a belt. It is loud, hot, and clausterphobic all the way back inside that tube, but he handles it like a warrior. He doesn't complain much, and typically gets through the whole thing with just one break for the bathroom. I have a present waiting for him each time he finishes one, and this time, I brought him a new lego set. I've learned that little surprises for him go a long way, and he truly appreciates them.
After the MRI, we went to meet the doctors for the proton radiation. The hospital in Boston is like a city. Not only is it huge, it feels like a college campus. Instead of a political science hall, or math wing, we found ourselves in the Proton Radiation center. We arrived and were greeted by the kindest human being who runs the center. He immediately made a connection with Noah and told him they would be seeing a lot of each other and would become fast friends. Nothing better than a tootsie pop and a massage chair for a 10 year old. We then were led to a conference room to meet our new team of doctors and support staff.
They took some measurements of Noah's height and weight, and also measured the length of his spine. It is likely his growth will be slightly impaired from the radiation to the spine, and so they will track his growth for years to come. We feel fortunate he has genes to be super tall anyway. There were about 6 people in the room other than us. The head radiation oncologist who specializes in this type of radiation, a pediatric oncologist, an attending, a researcher, a social worker, and a nurse. The group didn't even phase him. Six months ago, he would have been so shy and afraid, but now he addressed everyone, conversed, asked questions. He was as adorable as ever, and we felt so proud of him.
Unfortunately, we had a major blow. They told us that the non-cancerous part of the tumor, called the teratoma, had not shrunk enough to proceed forward with the radiation and before we begin, he will need to have 2nd look surgery, a nice way of saying brain surgery. Though this is something they told us about from day one, we could have never imagined he would need one. His tumor is called a Nongerminatous germ cell tumor in the pineal gland. It is made up of cancer cells and non cancer cells. While the chemo has taken care of the cancer, it does not affect the non-cancer cells. We needed the tumor to be no more than 1.0-1.2 cm in order to avoid the operation. His is about 1.6cm. Four millimeters? That's the difference between surgery and no surgery. Its so little. The width of my nail bed. It's nothing. But apparently it's more than something. We don't seem to have a choice.
Without surgery, the tumor can grow and impair him in unimaginable ways. If we do the radiation first and then wait to see if he needs surgery, it becomes even more risky with the scar tissue and that's left from radiation. Furthermore, the radiation has the potential to be less effective if we don't remove what we can first. So, with many tears, trepidation and anxiety, we will proceed forward and get the surgery done. I laid in his bed while he slept in our hotel room with tears running down my face the entire evening. I just can't even imagine what this is going to be like, and I definitely don't want him to have to experience any of it. Either of us would trade places with him in a heartbeat if we had the chance. We have the utmost faith in our neurosurgeon, but no matter how good he is, we are devastated by this and what could be. The pineal gland is smack in the center of the brain, and it is not an easy place to access. We are trying to just stay present and remember and acknowledge that he did an incredible job on his spinal surgery and that the outcome will be just as good for the brain. We have our minds set that this is the only possibility, and nothing else. As of right now, it will be scheduled for the 15th or 16th of August and then we will return to Boston for radiation around the 5th of September to begin the radiation.
For now, we will get on our plane, and enjoy this week together, hopefully putting all of this away from our thoughts for the week, and eventually behind us for good.
We have noticed he has become a little more clingy to us. He really doesn't seem to want to go to friend's houses, and when kids come to our house, he kind of hangs out in the background. Although we don't think he is depressed, he just seems to want to be nearer to us and to home. He did have one incident that we know about that was absolutely heartbreaking, and I know it scarred him slightly. We sent him to an art camp last month for 3 hours each morning, with 2 very close friends. Towards the end of the week, some of the kids asked him why he was always wearing a cap, and he didn't really respond. Apparently, a 10 year old girl came from behind him and took off his cap. He was totally humiliated. The friends he was with gave the girl hell, supported him, and everyone seemed to move on, but I know deep down it left him scarred and a little more aware of his appearance. It infuriated us, left us so sad that he has to deal with stuff like that on top of everything he is going through, and has left us to protect him even more. I have dreams of revenge. Of course nothing substantial, but I'd love to have a word with that girl.
We took him to Boston this week to get him set up for radiation. The plan was to have an MRI, a CT scan, and simulations of the radiation so they could build the software necessary to obliterate the tumor. Then, we were to return to Boston on August 15th to start radiation for 6 weeks. I guess the best laid out plans are never as you expect them. He spent 3 hours in the MRI machine, which by the way is absolutely torturous no matter what age you are, and he handles it better than I could. His head must be secured in a cage like device so it is still, and then his body is buckled into a belt. It is loud, hot, and clausterphobic all the way back inside that tube, but he handles it like a warrior. He doesn't complain much, and typically gets through the whole thing with just one break for the bathroom. I have a present waiting for him each time he finishes one, and this time, I brought him a new lego set. I've learned that little surprises for him go a long way, and he truly appreciates them.
After the MRI, we went to meet the doctors for the proton radiation. The hospital in Boston is like a city. Not only is it huge, it feels like a college campus. Instead of a political science hall, or math wing, we found ourselves in the Proton Radiation center. We arrived and were greeted by the kindest human being who runs the center. He immediately made a connection with Noah and told him they would be seeing a lot of each other and would become fast friends. Nothing better than a tootsie pop and a massage chair for a 10 year old. We then were led to a conference room to meet our new team of doctors and support staff.
They took some measurements of Noah's height and weight, and also measured the length of his spine. It is likely his growth will be slightly impaired from the radiation to the spine, and so they will track his growth for years to come. We feel fortunate he has genes to be super tall anyway. There were about 6 people in the room other than us. The head radiation oncologist who specializes in this type of radiation, a pediatric oncologist, an attending, a researcher, a social worker, and a nurse. The group didn't even phase him. Six months ago, he would have been so shy and afraid, but now he addressed everyone, conversed, asked questions. He was as adorable as ever, and we felt so proud of him.
Unfortunately, we had a major blow. They told us that the non-cancerous part of the tumor, called the teratoma, had not shrunk enough to proceed forward with the radiation and before we begin, he will need to have 2nd look surgery, a nice way of saying brain surgery. Though this is something they told us about from day one, we could have never imagined he would need one. His tumor is called a Nongerminatous germ cell tumor in the pineal gland. It is made up of cancer cells and non cancer cells. While the chemo has taken care of the cancer, it does not affect the non-cancer cells. We needed the tumor to be no more than 1.0-1.2 cm in order to avoid the operation. His is about 1.6cm. Four millimeters? That's the difference between surgery and no surgery. Its so little. The width of my nail bed. It's nothing. But apparently it's more than something. We don't seem to have a choice.
Without surgery, the tumor can grow and impair him in unimaginable ways. If we do the radiation first and then wait to see if he needs surgery, it becomes even more risky with the scar tissue and that's left from radiation. Furthermore, the radiation has the potential to be less effective if we don't remove what we can first. So, with many tears, trepidation and anxiety, we will proceed forward and get the surgery done. I laid in his bed while he slept in our hotel room with tears running down my face the entire evening. I just can't even imagine what this is going to be like, and I definitely don't want him to have to experience any of it. Either of us would trade places with him in a heartbeat if we had the chance. We have the utmost faith in our neurosurgeon, but no matter how good he is, we are devastated by this and what could be. The pineal gland is smack in the center of the brain, and it is not an easy place to access. We are trying to just stay present and remember and acknowledge that he did an incredible job on his spinal surgery and that the outcome will be just as good for the brain. We have our minds set that this is the only possibility, and nothing else. As of right now, it will be scheduled for the 15th or 16th of August and then we will return to Boston for radiation around the 5th of September to begin the radiation.
For now, we will get on our plane, and enjoy this week together, hopefully putting all of this away from our thoughts for the week, and eventually behind us for good.
Sunday, July 3, 2016
Catching Up - Doing pretty well right now
Hi all,
I am sorry I haven't written in the longest time. I know many of you have reached out personally to me to check on Noah, and everyday I have meant to sit down and let everyone know his status, but I never seem to get around to it. So forgive me. I will try to update blog every 1-2 weeks from now on. Also, if you "follow" the blog, then you will receive a notice when I post something. You will need a google account to do so.
In general things for the past 5-6 weeks have been going pretty well. Chemotherapy has kind of become routine for him, and he really doesn't fight going. He has completed cycle 5/6 and will go in for the last cycle on July 11. This last cycle really beat him up and he was pretty sick for over a week after receiveing round 5. The particular drugs he needs for that series seem to affect him much more than the in-hospital treatment which will be our next round. So, I am crossing my fingers that he will tolerate this next round pretty well.
He was able to get rid of his brace mid June which has been so freeing. He can run around and play with other kids much more easily and is not as uncomfortable. We were all so happy to get rid of it. Funny enough though, he ended up feeling more secure with it on. He was so worried that his spine wouldn't heal as well, that he was super diligent with the brace. It showed us how strong and comfortable he feels about his situation, and he feels very secure that he will heal and move on from this nightmare.
We have had some really positive, amazing opportunities large and small that we have been able to celebrate that he could participate in. We cherish all of our family moments together, and the bond that the kids have created is priceless. We used to get into the car and within 11 seconds flat, someone would start fighting. Boy have times changed. No more fighting. Eli and Simon (Eli especially) has developed so much empathy and strength and supports Noah in a way that is so heartwarming. He cheers when Noah is able to do something unexpected, he brings him little presents when he misses out on something, he sits with him when he's sick from chemo, he incudes him in his playdates with his friends, and the list goes on and on. His humanity is increidble and we are so proud of him. The bond between the 3 of them has grown tremendously as well. Simon had an incident with a friend that was truly upsetting to him. They all sat around and listened to him, and then went to his room to read to him till he went to sleep. I can't say I would ever ask for my child to be sick, but this is truly a special heartwarming outcome.
In late May, Noah's immune numbers weren't very good, and he was not able to recieve chemo on time. It ended up being the biggest gift ever. Because of that, he was able to attend his 4th grade field trip to a mining town called Colombia. We weren't 100% sure he would make it, so only his teacher knew. We arrived at the school a few minutes behind everyone else and all of the kids were seated in at their desks. Noah's teacher had left his desk open the whole year, and Noah walked into the room with confidence and self esteem and sat right down. When the kids noticed he was there, they startted cheering and clapping. I had tears rolling down my face uncontrollably. What a high that was. I drove him to the field trip and he as able to run around and buy candy, "mind for gold" and do everything else the other kids did. His class had a horseshoe personally stamped with a message for him and presented it to him at the end. It will be something he will cherish forever.
Also because his numbers delayed his chemo schedule, it also worked out that Adam was able to take him on the annual boys camping trip. 6 dads, 16 kids, 3 nights near Tahoe. He was like one of the kids and it was so heartwarming and uplifting for him to feel like a normal kid for a little bit. We were pinching ourselves that he did so well.
He had a spinal tap towards the end of June and we got very good news from that. It appears that the cancer is undetectable. While they are not able to test for errant cells, there was no cancer in his spinal fluid which was a huge victory. He does still have a tumor in his brain however. His particular tumor is made up of mixed cells. Some of them were cancerous and then some were non cancercous cells called teratomas. Chemo doesn't always destroy the non cancerous part very well. Per his last MRI, his teratoma has not reduced to the size they were hoping, and so there is a strong possibility he will need a "clean out" or brain surgery to get rid of the teratoma before chemo. Right now the teratoma was measured around 1.5 cm, and it needs to be 1 cm. or less to go straight to radiation. We will have an MRI the week of July 25 and then have a better idea. We are a bit hysterical about that possibility. Because the tumor is in the pineal gland, they will need to enter through the back of the skull into the middle of the brain and remove what they can without affecting him. The most common complication is that he wont be able to use his eyes to look up and rather have to move his head. It is a rough thought to come to terms with.
Regardless of the brain surgery, our next big hill to climb will be radiation. We will begin mid August, and we are going to Mass General in Boston for the radiation. After doing extensive research, (and thank you to everyone who helped) we decided Boston or MD Anderson in Texas were our only 2 choices. There are not that many of these proton machines in the country, and he needs something called crainal sacral radiation. This means they will need to radiate his entire brain and spinal cord. While everyone who has the machine is very qualified, we found out that its in the art of the delivery that you minimize the effects. Mass General has absolutely the most experience with this type of radiation, and so we are crossing our fingers big time that going there will make a difference. The side effects (long term and short) can be horrible. They range from extreme exhustion and hormone regulation issues, to a loss of processing abilities and even IQ. The thought of what could be is terrifying, so its kind of a topic that is not discussed. I have done a ton of research about it, but Adam is not able to even talk about it.
The radiation will not be a walk in the park. It will be about an hour process every day. They will customize a mask for him that they will put over his face and then attach it to the table so that he cannot move his head. This part makes me the most upset. The thought of him being bolted to a table makes the whole thing feel archaic and torturous. They will do a lot of imaging to get him exactly in the right position, and then the actual delivery of the radiation takes about 7 minutes. During this time I will not be able to stay in the room. Apparantly the smell is horrible and many patients use vics vapor rub in the mask to cope with the smell. They told us that 99% of 10 year olds are not able to get through the process without sedation, and so there is a strong possiblity that he will have general anasthesia 5 days a week for 6 weeks to get through the radiaiton. I have been talking to him about this for weeks. He is afraid of being put to sleep and feels that he will get through it. I am sure if he can tolerate it for the first 3 days without sedation, then he will make it through the whole process. We really would prefer he doesn't have to be sedated, but obviuosly we will do what we have to. We are headed to Boston to be set up for the therapy the week of July 25. We will have a better idea then what his tolerance level is going to be. I also found out that radiation may make him as sick as he's been with chemo or more. Because it breaks down your bone marrow in the same way chemo does, patients can be very sick, so they are preparing us for that as well.
I have also slowly prepared him for the possibility of a brain surgery which he is deathly afraid of. (as are we) I am hoping and praying that these last 2 rounds of chemo will have affected the turmor enough to give us a break!!!
Thank you to everyone for your love and support that you shower on us. We feel it and plesae know that your prayers and support are truly appreciated and that we couldn't get throuth this without such a supportive group of friends and family.
Receving outpatient chemo. His quasi brother Eitan came to keep him company. They played video games and had chipotle.
End of the year party at our house. We were thrilled. Noah had about 10 friends over for swimming and BBQ. Very special day!!!!
An unforgettable memory. Uncle Josh took Noah to the Warriors Final Game 5. He was sooooo happy.
Boys from the 4th grade field trip. Another special day!!!
I am sorry I haven't written in the longest time. I know many of you have reached out personally to me to check on Noah, and everyday I have meant to sit down and let everyone know his status, but I never seem to get around to it. So forgive me. I will try to update blog every 1-2 weeks from now on. Also, if you "follow" the blog, then you will receive a notice when I post something. You will need a google account to do so.
In general things for the past 5-6 weeks have been going pretty well. Chemotherapy has kind of become routine for him, and he really doesn't fight going. He has completed cycle 5/6 and will go in for the last cycle on July 11. This last cycle really beat him up and he was pretty sick for over a week after receiveing round 5. The particular drugs he needs for that series seem to affect him much more than the in-hospital treatment which will be our next round. So, I am crossing my fingers that he will tolerate this next round pretty well.
He was able to get rid of his brace mid June which has been so freeing. He can run around and play with other kids much more easily and is not as uncomfortable. We were all so happy to get rid of it. Funny enough though, he ended up feeling more secure with it on. He was so worried that his spine wouldn't heal as well, that he was super diligent with the brace. It showed us how strong and comfortable he feels about his situation, and he feels very secure that he will heal and move on from this nightmare.
We have had some really positive, amazing opportunities large and small that we have been able to celebrate that he could participate in. We cherish all of our family moments together, and the bond that the kids have created is priceless. We used to get into the car and within 11 seconds flat, someone would start fighting. Boy have times changed. No more fighting. Eli and Simon (Eli especially) has developed so much empathy and strength and supports Noah in a way that is so heartwarming. He cheers when Noah is able to do something unexpected, he brings him little presents when he misses out on something, he sits with him when he's sick from chemo, he incudes him in his playdates with his friends, and the list goes on and on. His humanity is increidble and we are so proud of him. The bond between the 3 of them has grown tremendously as well. Simon had an incident with a friend that was truly upsetting to him. They all sat around and listened to him, and then went to his room to read to him till he went to sleep. I can't say I would ever ask for my child to be sick, but this is truly a special heartwarming outcome.
In late May, Noah's immune numbers weren't very good, and he was not able to recieve chemo on time. It ended up being the biggest gift ever. Because of that, he was able to attend his 4th grade field trip to a mining town called Colombia. We weren't 100% sure he would make it, so only his teacher knew. We arrived at the school a few minutes behind everyone else and all of the kids were seated in at their desks. Noah's teacher had left his desk open the whole year, and Noah walked into the room with confidence and self esteem and sat right down. When the kids noticed he was there, they startted cheering and clapping. I had tears rolling down my face uncontrollably. What a high that was. I drove him to the field trip and he as able to run around and buy candy, "mind for gold" and do everything else the other kids did. His class had a horseshoe personally stamped with a message for him and presented it to him at the end. It will be something he will cherish forever.
Also because his numbers delayed his chemo schedule, it also worked out that Adam was able to take him on the annual boys camping trip. 6 dads, 16 kids, 3 nights near Tahoe. He was like one of the kids and it was so heartwarming and uplifting for him to feel like a normal kid for a little bit. We were pinching ourselves that he did so well.
He had a spinal tap towards the end of June and we got very good news from that. It appears that the cancer is undetectable. While they are not able to test for errant cells, there was no cancer in his spinal fluid which was a huge victory. He does still have a tumor in his brain however. His particular tumor is made up of mixed cells. Some of them were cancerous and then some were non cancercous cells called teratomas. Chemo doesn't always destroy the non cancerous part very well. Per his last MRI, his teratoma has not reduced to the size they were hoping, and so there is a strong possibility he will need a "clean out" or brain surgery to get rid of the teratoma before chemo. Right now the teratoma was measured around 1.5 cm, and it needs to be 1 cm. or less to go straight to radiation. We will have an MRI the week of July 25 and then have a better idea. We are a bit hysterical about that possibility. Because the tumor is in the pineal gland, they will need to enter through the back of the skull into the middle of the brain and remove what they can without affecting him. The most common complication is that he wont be able to use his eyes to look up and rather have to move his head. It is a rough thought to come to terms with.
Regardless of the brain surgery, our next big hill to climb will be radiation. We will begin mid August, and we are going to Mass General in Boston for the radiation. After doing extensive research, (and thank you to everyone who helped) we decided Boston or MD Anderson in Texas were our only 2 choices. There are not that many of these proton machines in the country, and he needs something called crainal sacral radiation. This means they will need to radiate his entire brain and spinal cord. While everyone who has the machine is very qualified, we found out that its in the art of the delivery that you minimize the effects. Mass General has absolutely the most experience with this type of radiation, and so we are crossing our fingers big time that going there will make a difference. The side effects (long term and short) can be horrible. They range from extreme exhustion and hormone regulation issues, to a loss of processing abilities and even IQ. The thought of what could be is terrifying, so its kind of a topic that is not discussed. I have done a ton of research about it, but Adam is not able to even talk about it.
The radiation will not be a walk in the park. It will be about an hour process every day. They will customize a mask for him that they will put over his face and then attach it to the table so that he cannot move his head. This part makes me the most upset. The thought of him being bolted to a table makes the whole thing feel archaic and torturous. They will do a lot of imaging to get him exactly in the right position, and then the actual delivery of the radiation takes about 7 minutes. During this time I will not be able to stay in the room. Apparantly the smell is horrible and many patients use vics vapor rub in the mask to cope with the smell. They told us that 99% of 10 year olds are not able to get through the process without sedation, and so there is a strong possiblity that he will have general anasthesia 5 days a week for 6 weeks to get through the radiaiton. I have been talking to him about this for weeks. He is afraid of being put to sleep and feels that he will get through it. I am sure if he can tolerate it for the first 3 days without sedation, then he will make it through the whole process. We really would prefer he doesn't have to be sedated, but obviuosly we will do what we have to. We are headed to Boston to be set up for the therapy the week of July 25. We will have a better idea then what his tolerance level is going to be. I also found out that radiation may make him as sick as he's been with chemo or more. Because it breaks down your bone marrow in the same way chemo does, patients can be very sick, so they are preparing us for that as well.
I have also slowly prepared him for the possibility of a brain surgery which he is deathly afraid of. (as are we) I am hoping and praying that these last 2 rounds of chemo will have affected the turmor enough to give us a break!!!
Thank you to everyone for your love and support that you shower on us. We feel it and plesae know that your prayers and support are truly appreciated and that we couldn't get throuth this without such a supportive group of friends and family.
Boys from the 4th grade field trip. Another special day!!!
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