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.
Saturday, July 30, 2016
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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