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.
Tuesday, August 23, 2016
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!!!
Sunday, May 1, 2016
Long overdue post with great news to share
I know many people have been asking whats happening, and I am sorry its taken me so long to follow up. We checked out of the hospital for our first round of inpatient chemo on the 15th of April. This is 1 of 3 inpatient rounds we need. The other 3 rounds are outpatient which we had completed the first in the hospital due to his surgery. He has now completed 2 of 6 chemo rounds. In general he tolerated the treatment well, but because it was such an intense treatment with some very nasty drugs, we found out that we would need to administer a shot at home for 7-10 days following treatment in order to boost his white blood cell count. They told us the shot was no big deal, similar to that of diabetic, and we needed to choose someone who would be trained at the hospital. Unfortunately the shot was anything but easy.
Noah was so upset about this shot. He even suggested that he stay in the hospital an extra week just so they could administer the drug via his port. He is so exhausted of needles, pricks and pokes, and has created a fear in his head about the pain of a shot. I tried to reassure him that he has been through so much worse, but it was not worth trying to rationalize. He was hysterical. Absolutely out of control
We elected my dad to administer the shot. He figured he has given over 100,000 shots in peoples mouths and had no problem giving one to Noah. My poor dad.....boy was he wrong. This was not like any shot given before. The first one was given in the hospital before we could check out. They decided they would find a quiet small room with no distractions to give him the shot because he was so defiant and angry. The child-life specialist (a professional in the hospital there just to deal with the emotions of the child and help them through different challenges) was there, along with my dad, Adam, and a few nurses. He was absolutely hysterical. Screaming, crying, kicking, hitting, avoiding at any cost. The added stress was too much. We had the area numb, and when we he finally agreed to it, he screamed louder than one could imagine the entire time the medicine went in and then cried for 15 minutes after. We didn't know how we were going to do this for another week.
When we got home, the aftermath of the chemo set in a little. He was pretty tired and nauseous for about 4-5 days. He mostly laid on the couch and really didn't eat a thing. It was a Friday when we left the hospital and by Wednesday he was doing pretty well. The shot however was causing severe stress in the house. We needed to give it to him in the late afternoon daily, and he would hide, play games, and scream for about an hour until he would finally agree to sit in my lap and get the shot, which took another 30 min. I think the only reason he actually agreed to it was because I told him he absolutely had to have it within 24 hours of the last dose, and as much as he hated it, he believed it wouldn't work unless he got it in the appropriate timeframe.
The stress was too much though and by Tuesday we went to Plan B. We arranged for him to get the shot at our pediatricians office and though it wasn't perfect, it was much much better. By the second time he did it there, he even admitted it wasn't too bad, though he only admitted it once.
On Wednesday, he was doing so well, I took him to Whole Foods on his electric scooter, and was so happy he was doing better. But by 5pm his back pain returned and I knew we'd be headed to the hospital eventually. Fever surfaced around 8pm and we were in the ER by 9:15. Just like last time, his blood cell count was extremely low (this time it was 30 and normal counts are 1500-8000). His fever was swinging between 101-104 and when we got to the ER, it was jam packed. I tried to isolate him the best I could and waited to get him admitted. Eventually we made our way to the front and as soon as they knew he was neutropenic with fever they brought us into a special room just for this purpose. It is called a positive airflow room and doesn't allow germs to circulate from other places and vents. He had to have his port accessed to draw blood and start antibiotics. Pretty routine at this point. And with the numbing cream, he handles it beautifully. By midnight, they transferred us to our room on the 5th floor (our new home away from home) and we earned ourselves a few days in the hospital. The ticket to exiting is an ANC count above 700 and no fever for 24 hours. This took 48 hours.
We checked out just as Passover was beginning, and in a way felt that we had our own exodus from slavery. He had already put in requests for a special Passover Seder at my mother in laws house and we were able to celebrate the next day. The kids each requested their special foods, and Noah insisted we do it at her house becaues he loves the way she decorates the table. One can imagine that she went all out...not a detail missed, and we were so thankful and happy that we were altogether and had him home.
Since Saturday the 23rd, he has been doing amazing. Feeling really well, and getting strong for his next round of chemo on May 2. On April 27, he had his first follow up MRI since chemo had started, and we received really wonderful news. The spinal tumor is almost completely gone, and though the brain tumor has only shrunk ever so slightly, it is now full of holes as if it were swiss cheese which means the chemo is working. We are seriously overjoyed and celebrating. He has been able to swim, and hang out in the jacuzzi with family, and feel normal for a little bit. It makes all of the stress and agony feel palatable. We feel so positive that we will beat this and move on from this journey feeling stronger and more appreciate of our lives. We are even going away to Half Moon Bay for the evening on Saturday to celebrate and have a little break before chemo starts on Monday.
Noah was so upset about this shot. He even suggested that he stay in the hospital an extra week just so they could administer the drug via his port. He is so exhausted of needles, pricks and pokes, and has created a fear in his head about the pain of a shot. I tried to reassure him that he has been through so much worse, but it was not worth trying to rationalize. He was hysterical. Absolutely out of control
We elected my dad to administer the shot. He figured he has given over 100,000 shots in peoples mouths and had no problem giving one to Noah. My poor dad.....boy was he wrong. This was not like any shot given before. The first one was given in the hospital before we could check out. They decided they would find a quiet small room with no distractions to give him the shot because he was so defiant and angry. The child-life specialist (a professional in the hospital there just to deal with the emotions of the child and help them through different challenges) was there, along with my dad, Adam, and a few nurses. He was absolutely hysterical. Screaming, crying, kicking, hitting, avoiding at any cost. The added stress was too much. We had the area numb, and when we he finally agreed to it, he screamed louder than one could imagine the entire time the medicine went in and then cried for 15 minutes after. We didn't know how we were going to do this for another week.
When we got home, the aftermath of the chemo set in a little. He was pretty tired and nauseous for about 4-5 days. He mostly laid on the couch and really didn't eat a thing. It was a Friday when we left the hospital and by Wednesday he was doing pretty well. The shot however was causing severe stress in the house. We needed to give it to him in the late afternoon daily, and he would hide, play games, and scream for about an hour until he would finally agree to sit in my lap and get the shot, which took another 30 min. I think the only reason he actually agreed to it was because I told him he absolutely had to have it within 24 hours of the last dose, and as much as he hated it, he believed it wouldn't work unless he got it in the appropriate timeframe.
The stress was too much though and by Tuesday we went to Plan B. We arranged for him to get the shot at our pediatricians office and though it wasn't perfect, it was much much better. By the second time he did it there, he even admitted it wasn't too bad, though he only admitted it once.
On Wednesday, he was doing so well, I took him to Whole Foods on his electric scooter, and was so happy he was doing better. But by 5pm his back pain returned and I knew we'd be headed to the hospital eventually. Fever surfaced around 8pm and we were in the ER by 9:15. Just like last time, his blood cell count was extremely low (this time it was 30 and normal counts are 1500-8000). His fever was swinging between 101-104 and when we got to the ER, it was jam packed. I tried to isolate him the best I could and waited to get him admitted. Eventually we made our way to the front and as soon as they knew he was neutropenic with fever they brought us into a special room just for this purpose. It is called a positive airflow room and doesn't allow germs to circulate from other places and vents. He had to have his port accessed to draw blood and start antibiotics. Pretty routine at this point. And with the numbing cream, he handles it beautifully. By midnight, they transferred us to our room on the 5th floor (our new home away from home) and we earned ourselves a few days in the hospital. The ticket to exiting is an ANC count above 700 and no fever for 24 hours. This took 48 hours.
We checked out just as Passover was beginning, and in a way felt that we had our own exodus from slavery. He had already put in requests for a special Passover Seder at my mother in laws house and we were able to celebrate the next day. The kids each requested their special foods, and Noah insisted we do it at her house becaues he loves the way she decorates the table. One can imagine that she went all out...not a detail missed, and we were so thankful and happy that we were altogether and had him home.
Since Saturday the 23rd, he has been doing amazing. Feeling really well, and getting strong for his next round of chemo on May 2. On April 27, he had his first follow up MRI since chemo had started, and we received really wonderful news. The spinal tumor is almost completely gone, and though the brain tumor has only shrunk ever so slightly, it is now full of holes as if it were swiss cheese which means the chemo is working. We are seriously overjoyed and celebrating. He has been able to swim, and hang out in the jacuzzi with family, and feel normal for a little bit. It makes all of the stress and agony feel palatable. We feel so positive that we will beat this and move on from this journey feeling stronger and more appreciate of our lives. We are even going away to Half Moon Bay for the evening on Saturday to celebrate and have a little break before chemo starts on Monday.
Tuesday, April 12, 2016
Huge Week
Neutripenic. This is a word that one would never need to know unless you are in the medical field, or someone dealing with cancer. We of course find ourselves in the latter group, and neutripenic was exactly what we were trying to overcome last week. Neutripenia is an extremely low level of neutrophils in your blood, which are a type of white blood cells that fight off infections, especially bacteria. Since the neutrophils are manufactured in the bone marrow, and the chemo destroys those cells, people receiving chemo are at an extremely high risk of infection when they become nuetripenic, which happens mid-cyle of Noah's chemo regime. This was most likely the cause of his fever which landed him in the hospital for a few days.
When we checked out, we were told he really shouldn't even go outside until his neutrophil count or more specifically his ANC goes above 1000. This meant masks to and from the car, and minimum contact with people. When we checked into the hospital he was around 100, so we were expecting a long wait. But, its just remarkable how the body recovers. Within a day or so of checking out of the hospital, his energy and appetite were better and we could just tell his numbers must have climbed dramatically. Which, or course, was confirmed by a blood test. He was back near 1000 within a day.
We were so happy, and it couldn't have come at a better time. His very closest friend who is not even 10 yrs. old yet, and lives in Southern California, got on a plane all by himself to come and stay with us for 2 nights. It was the most special expereince we've had in a long time. It was as if Noah had forgotten he was sick. They played from the minute they woke up until dark. We were able to take them out for a few meals, and he even came to the blood draw which was a huge boost for Noah. We had ordered an electric scooter that you sit on and is not in anyway orthopedic. In fact, it is made by Razor and is "super cool" according to our 6 year old. This way, Noah he can join us or other friends on the bike trail. It arrived just in time for his friend's visit, and it couldn't have worked out better. It was amazing. He was able to ride to our local center where we had bagels and tons of laughs. It gave him mobility and freedom. Together with his friend and newfound mobility, Noah seemed to forget about his problems for a little bit and just be 10 years old again. We are so thankful and appreicative his friend came, and we count every great day, becuase there are so many that are so difficult.
The evening his friend left, his hair was really starting to fall out. It had been coming out little by little all week, but by Friday it didn't just look thinner, he was getting some bald spots. He has been so sensitive about his hair that he didn't even want to shower all week becuase he was worried a little water even getting near his scalp would cause his hair to fall out more. We talked to him about shaving his head, but he had been adamant that he didn't want to. After going to bed that evening, he he came to our room complaining of the discomfort from all of the hair on his pillow. I was downstairs, and I came upstairs to find one of the most heartbreaking things I had seen yet. He was sitting in a chair in our bathroom with Adam and he was looking in a mirror and pulling his hair out in chunks. Initially, they tried to shave it, but it was more uncomfortable that just pulling it apparantly. So there he sat, calmly, and without too much emotion, pulling out strands of his hair. Chunk by chunk. I couldn't even stay in there. It was too heart wrenching. He was extremely brave and strong, and I will never forget how beautiful he looks without hair.
For him, losing his hair has been a huge blow. In fact he hasn't taken off a hat since its been gone. He sleeps in it round the clock, and wouldn't even allow the doctors to take a look at his head. He said he really hates the way he looks and feels so ashamed. We have enlisted help from a lot of staff at the hospital, and we are hoping that it is something he will feel better about very soon. Hair loss is a constant reminder of cancer, and it is the first thing someone thinks of when they see it, so we totally empathize and understand how difficult it is. We try our best to remind him how brave, strong, and handsome he is, and we know he will adjust eventually.
Round 2 of chemo started on Sunday. It is 5 day cyle of a different concoction of chemo than last time. It is administered in the hospital becuase of the possible side effects and it necessitates a constant heavy flow of IV fluid to flush it out of the system. So we checked in to our home away from home and will be there through Friday. This time it has been so much better than the first. We were able to organize a schedule and all 4 grandparents, Adam, and I take shifts round the clock so he is never alone. He has full time attention and I think he kind of likes that. He plays cards, backgammon, chess, and monopoly. The hospital has also provided some incredible activities. The have volunteers come and do a variety of things at his bedside. In just 2 days he has built a very intricate lego robot with someone from Playwell Technologies, he played chess with a retiree who visits the hospital once in a while, and he keeps a running tab of his wins of cards with his grandparents.
We feel fortunate that so far he has tolerated the chemo pretty well. Because he was so nauseous last time, they suggested we try a new drug this time. When I picked it up at the pharmacy, I found out it costs $1500.00 for the 3 pill dose. Thank goodness our insurance covered it, but I would pay for it if I had to. It has been an absolute miracle so far. No nausea or throwing up, and in general he has really been feeling good considering.
We also had some wonderful news this evening which we are celebrating. His particular type of cancer is partially detected with a certain blood count call AFP. A healthy person has an AFP of less than 10ng/ML. When Noah was first tested, his was 1400ng/ML. Just to give an idea, a liver cancer patient with a very high AFP is around 550ng/ML, so his was extremely high. They retested it when we came into the hospital and the results were quite positive. His is now down to 135ng/ML so we can assume the treatment is working. We will know even more before his next round when he has another MRI.
Once again, we are so fortunate and feel so loved by our friends, family, and greater community. We are thankful for everyones well wishes, meals, gifts, thoughts, playdates, rides, and even trees planted in Israel. Please know we receive it all, and so appreciate everything, and I hope to be able to thank each of you individually one day.
Some Highlights from the week:
When we checked out, we were told he really shouldn't even go outside until his neutrophil count or more specifically his ANC goes above 1000. This meant masks to and from the car, and minimum contact with people. When we checked into the hospital he was around 100, so we were expecting a long wait. But, its just remarkable how the body recovers. Within a day or so of checking out of the hospital, his energy and appetite were better and we could just tell his numbers must have climbed dramatically. Which, or course, was confirmed by a blood test. He was back near 1000 within a day.
We were so happy, and it couldn't have come at a better time. His very closest friend who is not even 10 yrs. old yet, and lives in Southern California, got on a plane all by himself to come and stay with us for 2 nights. It was the most special expereince we've had in a long time. It was as if Noah had forgotten he was sick. They played from the minute they woke up until dark. We were able to take them out for a few meals, and he even came to the blood draw which was a huge boost for Noah. We had ordered an electric scooter that you sit on and is not in anyway orthopedic. In fact, it is made by Razor and is "super cool" according to our 6 year old. This way, Noah he can join us or other friends on the bike trail. It arrived just in time for his friend's visit, and it couldn't have worked out better. It was amazing. He was able to ride to our local center where we had bagels and tons of laughs. It gave him mobility and freedom. Together with his friend and newfound mobility, Noah seemed to forget about his problems for a little bit and just be 10 years old again. We are so thankful and appreicative his friend came, and we count every great day, becuase there are so many that are so difficult.
The evening his friend left, his hair was really starting to fall out. It had been coming out little by little all week, but by Friday it didn't just look thinner, he was getting some bald spots. He has been so sensitive about his hair that he didn't even want to shower all week becuase he was worried a little water even getting near his scalp would cause his hair to fall out more. We talked to him about shaving his head, but he had been adamant that he didn't want to. After going to bed that evening, he he came to our room complaining of the discomfort from all of the hair on his pillow. I was downstairs, and I came upstairs to find one of the most heartbreaking things I had seen yet. He was sitting in a chair in our bathroom with Adam and he was looking in a mirror and pulling his hair out in chunks. Initially, they tried to shave it, but it was more uncomfortable that just pulling it apparantly. So there he sat, calmly, and without too much emotion, pulling out strands of his hair. Chunk by chunk. I couldn't even stay in there. It was too heart wrenching. He was extremely brave and strong, and I will never forget how beautiful he looks without hair.
For him, losing his hair has been a huge blow. In fact he hasn't taken off a hat since its been gone. He sleeps in it round the clock, and wouldn't even allow the doctors to take a look at his head. He said he really hates the way he looks and feels so ashamed. We have enlisted help from a lot of staff at the hospital, and we are hoping that it is something he will feel better about very soon. Hair loss is a constant reminder of cancer, and it is the first thing someone thinks of when they see it, so we totally empathize and understand how difficult it is. We try our best to remind him how brave, strong, and handsome he is, and we know he will adjust eventually.
Round 2 of chemo started on Sunday. It is 5 day cyle of a different concoction of chemo than last time. It is administered in the hospital becuase of the possible side effects and it necessitates a constant heavy flow of IV fluid to flush it out of the system. So we checked in to our home away from home and will be there through Friday. This time it has been so much better than the first. We were able to organize a schedule and all 4 grandparents, Adam, and I take shifts round the clock so he is never alone. He has full time attention and I think he kind of likes that. He plays cards, backgammon, chess, and monopoly. The hospital has also provided some incredible activities. The have volunteers come and do a variety of things at his bedside. In just 2 days he has built a very intricate lego robot with someone from Playwell Technologies, he played chess with a retiree who visits the hospital once in a while, and he keeps a running tab of his wins of cards with his grandparents.
We feel fortunate that so far he has tolerated the chemo pretty well. Because he was so nauseous last time, they suggested we try a new drug this time. When I picked it up at the pharmacy, I found out it costs $1500.00 for the 3 pill dose. Thank goodness our insurance covered it, but I would pay for it if I had to. It has been an absolute miracle so far. No nausea or throwing up, and in general he has really been feeling good considering.
We also had some wonderful news this evening which we are celebrating. His particular type of cancer is partially detected with a certain blood count call AFP. A healthy person has an AFP of less than 10ng/ML. When Noah was first tested, his was 1400ng/ML. Just to give an idea, a liver cancer patient with a very high AFP is around 550ng/ML, so his was extremely high. They retested it when we came into the hospital and the results were quite positive. His is now down to 135ng/ML so we can assume the treatment is working. We will know even more before his next round when he has another MRI.
Once again, we are so fortunate and feel so loved by our friends, family, and greater community. We are thankful for everyones well wishes, meals, gifts, thoughts, playdates, rides, and even trees planted in Israel. Please know we receive it all, and so appreciate everything, and I hope to be able to thank each of you individually one day.
Some Highlights from the week:
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| Math time with Grandpa Alan |
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| Backgammon with Saba in the hospital |
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| Backgammon Professional |
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| Simon visits the hospital and perfoms magic tricks |
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| Friend Noah and Noah Barme at the blood draw |
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| Hospital food? Forget it mom. I want sushi!! |
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