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.
Sunday, May 1, 2016
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!! |
Wednesday, April 6, 2016
Ups and Downs
This weekend brought a lot of new lessons and emotions to contend with. Noah's energy over the weekend wasn't the greatest. He really didn't seem motivated to do anything but watch t.v., and his color was quite pale. I figured that some days were just going to be better than others, and we just did what we could to make him comfortable. He was complaining of some pain on the sides of his back near his incision site, and we were hoping it was just his back healing and nothing serious. It did cross my mind that maybe the chemo wasn't working, but I tried to put that out of my head as quickly as possible.
On Sunday, he was really quite pale and had super low energy, so our dear friend came by to take a look at him. She thought maybe we would need a blood or platelet transfusion as he seemed quite anemic. (Apparently, this is par for the course, and we should expect to have a transfusion at some point in the future. ) Since we were having a blood test in the morning, we decided to just wait out the night instead of dealing with the E.R. and everything else that comes along with that. By 10 p.m. however, he spiked a fever. Any fever over 100°F earns us a trip to the ER, so we called the oncology resident at the hospital who said to wait an hour, and if it was still over 100°F we needed to bring him in. He went to sleep and we checked on him an hour later, and sure enough it was off to the ER. Under any circumstances, taking a child to the ER is stressful on everyone. But this was close to catastrophic. We woke him up and told him we needed to go. He went absolutely crazy. Screaming, crying, shouting obscenities, and that was just to get him in the car. Adam insisted that he take him, and somehow through all of the arguing, he got him into the car. I assumed that I would hear from them after they were seen. Within 1 minute of driving out of the driveway however, I got the call. He was hysterical, screaming, crying, and once again blaming me for making him go. It takes such an emotional toll on everyone, and I just have to keep in mind that he is just terribly scared and justifiably so.
We talked the entire way to the hospital. He was most upset that they would have to take blood and access his port. He did not want any more pain. Of course, no one wants him to have anymore pain. I talked to him about the fact that each time he has had to do a blood draw, he gets so worked up and upset that the fear is worse than the actual blood draw. We had all of the right tools in place to minimize the pain, and if he really thought about it, the actual needle wasn't so bad. He said he didn't care. I suggested that he try to stay calm and breathe....just once and see what happens. He argued. I said, just try it my way one time. Adam said that when they got there, they numbed him even more and assured him he wouln't feel a thing. Sure enough, he breathed through it and said it didn't hurt. I just hope he will remember that next time.
By 4am, the we were moved to our new home away from the home, the 5th floor oncology at Childrens Hospital. They started him on an antibiotic drip and soon enough the fever was gone. However, they don't allow you to leave until you have at least 24 hours fever free. So the waiting game began. We stayed all of Monday and by Tuesday around noon, we were able to go home. It was sort of a strange feeling, but going back to the oncology floor felt kind of comforting to both Adam and I. We sort of knew the routine, some of the nurses, what to expect, and having him there cared for by professionals was strangely soothing. We of course were thrilled to go home, acutely aware that we would be headed back there on Sunday for a week of chemo.
The other issue we are contending with is his hair loss. On Saturday he noticed his hair was starting to fall out. This has been at the forefront of his mind the entire time. He mentioned to my mom that he noticed he was losing some of his hair, but he really kept it to himself. Hair contributes to one's identity so much, and the thought of losing all of it without any control is terrifying. In fact, since its begun to fall out, he hasn't wanted to wash it or even get it wet. He is constantly asking us to wipe the hair off his neck and we are finding hair everywhere. I suggested to him numerous times that he could shave it off so that he was in control of it, but he has been adamant that he doesn't want to do that. As soon as we got home from the hospital on Tuesday, our amazing hairdresser, Long, came to the house to cut his wig on his head. Most of the nurses told me it would be unlikely he would wear it, but we bought one anyway, and I hope it makes him feel more secure. Long gave the wig a perfect cut, and literally you can't tell its not his hair. It did put quite a smile on his face when he saw it. He has yet to actually wear it though.
We learned quite a few lessons in the last few days. First of all, it is important to pack a bag of clothing for both us and him that is ready to go in case of an emergency. It needs to have overnight clothing, a phone charger, tooth brush, and some chocolate bars for the blood draw. We also learned that we need to anticipate the unexpected and role play some various situations with him in the event they do occur in the future. He likes to be involved and informed of every detail, and hates surprises so anything we can do to minimize the surprise will hopefully give all of us a better experience.
Some Highlights from the week:
On Sunday, he was really quite pale and had super low energy, so our dear friend came by to take a look at him. She thought maybe we would need a blood or platelet transfusion as he seemed quite anemic. (Apparently, this is par for the course, and we should expect to have a transfusion at some point in the future. ) Since we were having a blood test in the morning, we decided to just wait out the night instead of dealing with the E.R. and everything else that comes along with that. By 10 p.m. however, he spiked a fever. Any fever over 100°F earns us a trip to the ER, so we called the oncology resident at the hospital who said to wait an hour, and if it was still over 100°F we needed to bring him in. He went to sleep and we checked on him an hour later, and sure enough it was off to the ER. Under any circumstances, taking a child to the ER is stressful on everyone. But this was close to catastrophic. We woke him up and told him we needed to go. He went absolutely crazy. Screaming, crying, shouting obscenities, and that was just to get him in the car. Adam insisted that he take him, and somehow through all of the arguing, he got him into the car. I assumed that I would hear from them after they were seen. Within 1 minute of driving out of the driveway however, I got the call. He was hysterical, screaming, crying, and once again blaming me for making him go. It takes such an emotional toll on everyone, and I just have to keep in mind that he is just terribly scared and justifiably so.
We talked the entire way to the hospital. He was most upset that they would have to take blood and access his port. He did not want any more pain. Of course, no one wants him to have anymore pain. I talked to him about the fact that each time he has had to do a blood draw, he gets so worked up and upset that the fear is worse than the actual blood draw. We had all of the right tools in place to minimize the pain, and if he really thought about it, the actual needle wasn't so bad. He said he didn't care. I suggested that he try to stay calm and breathe....just once and see what happens. He argued. I said, just try it my way one time. Adam said that when they got there, they numbed him even more and assured him he wouln't feel a thing. Sure enough, he breathed through it and said it didn't hurt. I just hope he will remember that next time.
By 4am, the we were moved to our new home away from the home, the 5th floor oncology at Childrens Hospital. They started him on an antibiotic drip and soon enough the fever was gone. However, they don't allow you to leave until you have at least 24 hours fever free. So the waiting game began. We stayed all of Monday and by Tuesday around noon, we were able to go home. It was sort of a strange feeling, but going back to the oncology floor felt kind of comforting to both Adam and I. We sort of knew the routine, some of the nurses, what to expect, and having him there cared for by professionals was strangely soothing. We of course were thrilled to go home, acutely aware that we would be headed back there on Sunday for a week of chemo.
The other issue we are contending with is his hair loss. On Saturday he noticed his hair was starting to fall out. This has been at the forefront of his mind the entire time. He mentioned to my mom that he noticed he was losing some of his hair, but he really kept it to himself. Hair contributes to one's identity so much, and the thought of losing all of it without any control is terrifying. In fact, since its begun to fall out, he hasn't wanted to wash it or even get it wet. He is constantly asking us to wipe the hair off his neck and we are finding hair everywhere. I suggested to him numerous times that he could shave it off so that he was in control of it, but he has been adamant that he doesn't want to do that. As soon as we got home from the hospital on Tuesday, our amazing hairdresser, Long, came to the house to cut his wig on his head. Most of the nurses told me it would be unlikely he would wear it, but we bought one anyway, and I hope it makes him feel more secure. Long gave the wig a perfect cut, and literally you can't tell its not his hair. It did put quite a smile on his face when he saw it. He has yet to actually wear it though.
We learned quite a few lessons in the last few days. First of all, it is important to pack a bag of clothing for both us and him that is ready to go in case of an emergency. It needs to have overnight clothing, a phone charger, tooth brush, and some chocolate bars for the blood draw. We also learned that we need to anticipate the unexpected and role play some various situations with him in the event they do occur in the future. He likes to be involved and informed of every detail, and hates surprises so anything we can do to minimize the surprise will hopefully give all of us a better experience.
Some Highlights from the week:
We were able to have Shabbat dinner on Friday with our very close friends. There are about 11 kids between 4 families and the kids are as close as siblings/cousins.
While we were in the hospital for the fever, a man from the Lawrence Hall of Science came and worked with Noah on magnets and electrons and the science and mechanics of airplanes. They built a cylidrical airplane out of paper and Noah loved every single minute. He was so curious about every detail, and could barely let the guy leave.
He really didn't want me taking this photo, but this is him with the wig on. Looks perfect!!
One of the many wonderful books we have been sent and he is enjoying!! Thank you to everyone supporting him!! All of the support brings a huge smile to him and us!!
Thursday, March 31, 2016
First week home
We have been home a week now, and things are going as well as they can. The first few days home, Noah was still recovering from the chemo, and was still pretty nauseous. He woke up throwing up one morning, and for a few days was just laying around, not wanting to move. But it feels wonderful to have him home, and it felt amazing to have dinners together again, and have some semblence of normal or our new normal.
By Sunday, he seemed to perk up a little, and things went up from there. Monday, he had to have some blood work, and was obsessing about it all weekend. When Monday arrived, he was again lashing out at me that it was my fault he had to do this, and why was I making him, and he was pretty upset. When we arrived to get the blood test, I was fully prepared. Arm was numbed, we had a kit kat ready to go, and even purchased a little tool that you put on your arm that vibrates, which is supposed to change your brain connection to the pain. We got into the room, and he went crazy. Screaming, arguing with me, arguing with the nurse. I got him to sit in my lap, and they had to bring someone else in to hold his arm straight. I assured him that he had been through much worse, and we had taken all the right steps so he wouldn't feel a thing, but there was no rationalizing with him. He screamed as the needle went in, and then a calm came over him. I know it didn't hurt as much as he imagined, and tried to make that point to him, but he disagreed. We got through it, and I have been trying to process it with him all week because this is his new normal. He will need 1-2 blood tests a week during this chemo period, and he will have to come to terms with it.
His walking has improved greatly. He is more cooperative with his brace, and in general is walking ok. He is not that steady on his feet yet, but is definitly able to get around and wants to be independent. Over the weekend, he had 2 different friends come to play which was so positive for him. I think he felt normal again. He also loves receiving texts and videos from friends. Please text me for his phone number is your child can communicate with him.
My dad doesn't like to leave his side. He comes in the morning at 7:45 before I take the other 2 kids to school, and they play cards. Between my inlaws who taught him how to play poker in the hospital, and my dad who has taught him gin rummy, he is becoming quite the professional card player. He had a friend come from school to say hi which was awesome, and we welcome more friends as long as his white blood cell count stays high enough.
He had his first physical therapy appointment today. It was another battle to get him there, though it actaully was a very positive experience. He has been asking us to get him an electric razor that you sit on so he can go on the trail with his brothers, and the physical therapist thought it was a perfect thing for him. So that was a win for him. The therapist was teriffic with him, and at the end I think he even had fun. She works with kids who stuggle through cancer, and was able to talk to him with compassion, understanding, and even helped him feel better about his situation. I am hoping he will want to go next time.
We have one more week until we head back for a 6 day chemo round in the hospital, and at some point after that, they will take another MRI to make sure the chemo is working. Once again, we feel so fortuante and blessed by all of the love and supoprt. We have heard from friends and family all around the world, and it is a huge boost for him and all of us.
Some highlights from the week:
My brother and nephews sent this from New York. Noah just loves it and we keep it in the entry of our house.
His friend Race from his class came to visit, and they had a tough few games of War!!!
Simon had a baseball game. We got to go and support him.
By Sunday, he seemed to perk up a little, and things went up from there. Monday, he had to have some blood work, and was obsessing about it all weekend. When Monday arrived, he was again lashing out at me that it was my fault he had to do this, and why was I making him, and he was pretty upset. When we arrived to get the blood test, I was fully prepared. Arm was numbed, we had a kit kat ready to go, and even purchased a little tool that you put on your arm that vibrates, which is supposed to change your brain connection to the pain. We got into the room, and he went crazy. Screaming, arguing with me, arguing with the nurse. I got him to sit in my lap, and they had to bring someone else in to hold his arm straight. I assured him that he had been through much worse, and we had taken all the right steps so he wouldn't feel a thing, but there was no rationalizing with him. He screamed as the needle went in, and then a calm came over him. I know it didn't hurt as much as he imagined, and tried to make that point to him, but he disagreed. We got through it, and I have been trying to process it with him all week because this is his new normal. He will need 1-2 blood tests a week during this chemo period, and he will have to come to terms with it.
His walking has improved greatly. He is more cooperative with his brace, and in general is walking ok. He is not that steady on his feet yet, but is definitly able to get around and wants to be independent. Over the weekend, he had 2 different friends come to play which was so positive for him. I think he felt normal again. He also loves receiving texts and videos from friends. Please text me for his phone number is your child can communicate with him.
My dad doesn't like to leave his side. He comes in the morning at 7:45 before I take the other 2 kids to school, and they play cards. Between my inlaws who taught him how to play poker in the hospital, and my dad who has taught him gin rummy, he is becoming quite the professional card player. He had a friend come from school to say hi which was awesome, and we welcome more friends as long as his white blood cell count stays high enough.
He had his first physical therapy appointment today. It was another battle to get him there, though it actaully was a very positive experience. He has been asking us to get him an electric razor that you sit on so he can go on the trail with his brothers, and the physical therapist thought it was a perfect thing for him. So that was a win for him. The therapist was teriffic with him, and at the end I think he even had fun. She works with kids who stuggle through cancer, and was able to talk to him with compassion, understanding, and even helped him feel better about his situation. I am hoping he will want to go next time.
We have one more week until we head back for a 6 day chemo round in the hospital, and at some point after that, they will take another MRI to make sure the chemo is working. Once again, we feel so fortuante and blessed by all of the love and supoprt. We have heard from friends and family all around the world, and it is a huge boost for him and all of us.
Some highlights from the week:
My brother and nephews sent this from New York. Noah just loves it and we keep it in the entry of our house.
We heated the pool for the weekend. Hoping Noah will jump in soon!!!
Thursday, March 24, 2016
Chemo, Pnumonia, and Going Home!!!
Per my last post, becuase his lung collapsed during surgery last Friday, we were unable to begin treatment as planned. We worked with him hourly to breathe through a sperometer to induce a cough, but it was a very difficult power struggle, and we were less than successful. He was still in quite a bit of pain from surgery, and he had a new wound to contend with that was quite sore - his port. On Saturday morning, he had an X-ray of his lung, and we were crossing our fingers that chemo could start becuase the type of tumor that he has is very fast growing. Since the brain tumor was not impeding any brain function, we wanted to prevent any chance that it may block a channel. Unfortunately, his lungs were too congested, and not strong enough so we held off another day. On Sunday morning, the lung culture came back from the lab - a confirmation of pnuemonia. However, they decided they couldn't wait for the chemo any longer, and ordered the pharmacy to prepare the first dose. They started him on an antibiotic, and we were very happy he was going to receive the treatment.
It takes quite a while to have the chemo cocktail prepared, and it was a day filled with anxiety for him. When he realized he might lose his hair from the side effects of chemo, he put it together that he has cancer. Up until this point, we told him he had a tumor that was going to be treated with medicine. Becuase there has been so much overload for him, we made a conscious decsion to answer all questions honestly, but to only present with information needed at any given time. Once he asked me if he had cancer, I felt like I couldn't protect his childhood innocence any longer.
His only personal experience with cancer are stories that have ended in death, and he was very frightened. We had a long talk about all different kinds of cancer, and I assured him that the kind he had was very curable. He also asked if there was something he did wrong to cause this, and it just broke my heart. He wondered if it was something he ate or didn't eat, or somewhere he went. Of course I told him he had nothing to do with it, and couldn't do anything to prevent it, but I am not sure how convinced he was. We had a wonderful male nurse who sat with him and gave him quite the science lesson on cells, and cell aptosis, and by the end of the conversation, I think he felt ok.
Around 5pm on Sunday night, we started the first of 3 days of chemotherapy. The first night consisted of 3 different drugs that dripped into his IV over 3 hours. His biggest fear is that he will lose his hair. He was absolutely obsessed about it. His nurse assured him it will take a few weeks before he has any hair loss if any at all, and I assured him that I would get a wig for him and many different hats and he can choose his own style. They also work very hard to try to avoid the harsh side effects of chemo. Every 2 hours round the clock, they trade off between benedryl, ativan, and zofran to counteract any nausea that may occur. We got through the first night pretty well, and I was super pleaseed he wasn't sick. His next dose was Monday and then again Tuesday. We noticed by Monday evening, he was ok as long as he was laying in bed, but any time someone asked him to stand up like in physical therapy or even to just sit up caused him great discomfort.
We expected to stay in the rehab part of the hospital for a few weeks after this chemo round, but we got very good news after his physical therapy on Tuesday. They decided that we could go home on Thursday, and we were thrilled. We set up an appointment with our lovely nursing case manager Amy, who taught us as much as we could learn about caring for someone undergoing chemotherapy at home. My head was spinning, but I was super happy to hear a few things that I know are important to Noah. There will definitely be some days that he is uanble to play and have visitors, but there will be many when his blood count is good, that he will be able to participate in many activites, and see friends as we see fit. He can have playdates, and swim, and even bike if he's up to it. Just no contact sports....which of course was fine for us.
I am writing this blog from home now, and very happy to report that we are home altogether as a family. Noah was released today from the hospital after a pretty successful first round of chemotherapy. His brothers were so happy to have him home, and we had dinner together for the frist time in over two weeks. We have been so fortunate to have so many people reach out to us sending their wishes, prayers, goodies, food, and love. We feel so supported and loved by our friends, family, and greater community, and the support brings light to this very heart-wrenching experience. Thank you to all of you!!! If all goes well, we will be home for the next 17 days, and then head back to the hospital for a 6 day treatment. Round 2
Noah arriving at home. He must wear this chest brace for about a month while the bones heal in his spine.
We had a visit today from our dear friend Sagiv. Gave us an entire lesson on Purim, taught Noah the entire story, and read him the entire "megillah." The one shown here is an ancient scroll made from lambs skin.
It takes quite a while to have the chemo cocktail prepared, and it was a day filled with anxiety for him. When he realized he might lose his hair from the side effects of chemo, he put it together that he has cancer. Up until this point, we told him he had a tumor that was going to be treated with medicine. Becuase there has been so much overload for him, we made a conscious decsion to answer all questions honestly, but to only present with information needed at any given time. Once he asked me if he had cancer, I felt like I couldn't protect his childhood innocence any longer.
His only personal experience with cancer are stories that have ended in death, and he was very frightened. We had a long talk about all different kinds of cancer, and I assured him that the kind he had was very curable. He also asked if there was something he did wrong to cause this, and it just broke my heart. He wondered if it was something he ate or didn't eat, or somewhere he went. Of course I told him he had nothing to do with it, and couldn't do anything to prevent it, but I am not sure how convinced he was. We had a wonderful male nurse who sat with him and gave him quite the science lesson on cells, and cell aptosis, and by the end of the conversation, I think he felt ok.
Around 5pm on Sunday night, we started the first of 3 days of chemotherapy. The first night consisted of 3 different drugs that dripped into his IV over 3 hours. His biggest fear is that he will lose his hair. He was absolutely obsessed about it. His nurse assured him it will take a few weeks before he has any hair loss if any at all, and I assured him that I would get a wig for him and many different hats and he can choose his own style. They also work very hard to try to avoid the harsh side effects of chemo. Every 2 hours round the clock, they trade off between benedryl, ativan, and zofran to counteract any nausea that may occur. We got through the first night pretty well, and I was super pleaseed he wasn't sick. His next dose was Monday and then again Tuesday. We noticed by Monday evening, he was ok as long as he was laying in bed, but any time someone asked him to stand up like in physical therapy or even to just sit up caused him great discomfort.
We expected to stay in the rehab part of the hospital for a few weeks after this chemo round, but we got very good news after his physical therapy on Tuesday. They decided that we could go home on Thursday, and we were thrilled. We set up an appointment with our lovely nursing case manager Amy, who taught us as much as we could learn about caring for someone undergoing chemotherapy at home. My head was spinning, but I was super happy to hear a few things that I know are important to Noah. There will definitely be some days that he is uanble to play and have visitors, but there will be many when his blood count is good, that he will be able to participate in many activites, and see friends as we see fit. He can have playdates, and swim, and even bike if he's up to it. Just no contact sports....which of course was fine for us.
I am writing this blog from home now, and very happy to report that we are home altogether as a family. Noah was released today from the hospital after a pretty successful first round of chemotherapy. His brothers were so happy to have him home, and we had dinner together for the frist time in over two weeks. We have been so fortunate to have so many people reach out to us sending their wishes, prayers, goodies, food, and love. We feel so supported and loved by our friends, family, and greater community, and the support brings light to this very heart-wrenching experience. Thank you to all of you!!! If all goes well, we will be home for the next 17 days, and then head back to the hospital for a 6 day treatment. Round 2
Simon and Eli will be returning to their rooms tonight. They have slept in Noah's room for the past 2 weeks, waiting for him to return home.
Sunday, March 20, 2016
A small victory
In our new found world, today was a day to celebrate. We have all been anxious to start chemo as soon as possible because of the speed rate of the tumor. First thing this morning, they did another x-ray of his lungs and decide that even though there was not really improvement, we would proceed with the chemo anyway because he did not have pneumonia. This was a step in the right direction.
The pain from his back has significantly decreased and is mostly very sore from such an extensive surgery. It was most evident today because he was able to pull himself into a seated position much more easily, and he even got out of bed a few times and took a few steps. Even though he was only able to walk 5 feet with support, it was a major improvement. In addition, his mood has returned to normal, and his agitation is less. We are celebrating.
We waited all day for the chemo to be prepared. Apparently, there are over 50 types of chemo, and hundreds of derivatives and mixtures. As it got closer to administering it, he was a little more anxious. His first and foremost concern is losing his hair. We talked about getting a wig if it made him more comfortable, and he insisted that I take photos of each side of his head so we could find a wig with the exact same color and texture as his. He told me he's like his hair dresser to cut it in the exact same style as now. He even joked that he'd never have bed head again. I was pinching myself that his spirit was back.
He also asked me a lot of questions regarding how this happened. He asked if it was something he did or didn't do and was it his fault. I am so thankful he is asking these things so we can help him process all of this. I, of course, assured him it was nothing he could have done and his nurse gave him a lesson on cells. He loved his science lesson and felt much better.
The nursing staff is amazing with him and prepares him for each little step along the way. He did have a pretty good stalking technique to receiving his first dose. About 30 minutes before we began, he asked if we could play monopoly. First time he asked to do something the entire time we've been here. I am sure he calculated the fact that monopoly is by far the longest game ever. It wasn't a coincidence I am sure.
Around 6 pm, he received the first dose. It dropped in for about 3 hours. They do everything they can to manage the side effects. So far so good.
We are on our way!!!
The pain from his back has significantly decreased and is mostly very sore from such an extensive surgery. It was most evident today because he was able to pull himself into a seated position much more easily, and he even got out of bed a few times and took a few steps. Even though he was only able to walk 5 feet with support, it was a major improvement. In addition, his mood has returned to normal, and his agitation is less. We are celebrating.
We waited all day for the chemo to be prepared. Apparently, there are over 50 types of chemo, and hundreds of derivatives and mixtures. As it got closer to administering it, he was a little more anxious. His first and foremost concern is losing his hair. We talked about getting a wig if it made him more comfortable, and he insisted that I take photos of each side of his head so we could find a wig with the exact same color and texture as his. He told me he's like his hair dresser to cut it in the exact same style as now. He even joked that he'd never have bed head again. I was pinching myself that his spirit was back.
He also asked me a lot of questions regarding how this happened. He asked if it was something he did or didn't do and was it his fault. I am so thankful he is asking these things so we can help him process all of this. I, of course, assured him it was nothing he could have done and his nurse gave him a lesson on cells. He loved his science lesson and felt much better.
The nursing staff is amazing with him and prepares him for each little step along the way. He did have a pretty good stalking technique to receiving his first dose. About 30 minutes before we began, he asked if we could play monopoly. First time he asked to do something the entire time we've been here. I am sure he calculated the fact that monopoly is by far the longest game ever. It wasn't a coincidence I am sure.
Around 6 pm, he received the first dose. It dropped in for about 3 hours. They do everything they can to manage the side effects. So far so good.
We are on our way!!!
Saturday, March 19, 2016
Port Surgery and Chemo?
Thank you for following Noah's journey here. I moved sites for various reasons, and I am glad you found us here.
Because the tumor is so rapidly growing, and it has not yet affected his brain, we are in a race against time to get the chemo started. The plan was to have his port put in during surgery Friday morning, and then start chemo the same evening. The day started very difficult. When he woke up, he discovered that he was not allowed to eat, which immediately set off the bells that he was having another surgery. He is still so scared to be sedated and feels so out of control, and since food is one of the only things he can decide and control, withholding it from him is an absolute injustice. He was an add on to the surgery schedule, and so we couldn't even tell him when he could eat again. He was screaming, agitated, and super annoyed at the prospect of an entire day without food. Anytime somone mentioned the word surgery or port, he went ballistic. They did reduce the steroids, so we are hoping the rage will come down soon.
Because the tumor is so rapidly growing, and it has not yet affected his brain, we are in a race against time to get the chemo started. The plan was to have his port put in during surgery Friday morning, and then start chemo the same evening. The day started very difficult. When he woke up, he discovered that he was not allowed to eat, which immediately set off the bells that he was having another surgery. He is still so scared to be sedated and feels so out of control, and since food is one of the only things he can decide and control, withholding it from him is an absolute injustice. He was an add on to the surgery schedule, and so we couldn't even tell him when he could eat again. He was screaming, agitated, and super annoyed at the prospect of an entire day without food. Anytime somone mentioned the word surgery or port, he went ballistic. They did reduce the steroids, so we are hoping the rage will come down soon.
We got news that they would do the surgery around 2pm. I met with the surgeon and we went over all the risks. He kept telling me how low the percentage was that we'd have any complications, and I just rolled my eyes since percentages have really not worked in our favor. He went for surgery, and when he woke up we were told one of his lungs' collapsed during the procedure and that we would have to postpone chemo. (Serious hiccup of the day, and clearly odds not in our favor). We would have a chest xray first thing Saturday morning to see if he could start.
On a positive note, we were moved out of ICU and onto the oncology floor. While it may not sound so amazing, we at least have our own room for now, and he is not being woken up and disturbed by a nurse every hour. It is quiet and he can rest more. In addition, we have been able to ween him off of many of the drugs, and he is returning to himself a little more. In fact, he doesn't even remember telling the nurse to "shut her pinhole." Which, if any of you know Noah, is totally out of character.
He woke up Saturday morning happy to order his breakfast his mood was much more stable. The technician came in to give him an xray but was unsuccessful becuase of the amount of pain. He decided he'd rather try to stand up and go down to the lab in a wheelchair to get it done. I was celebrating. Unfortunately, the X-ray showed his lung is still not ready to endure the chemo so we will have to wait another day.
We also had a heart to heart talk today. He finally asked if he had cancer, and I told him yes. We had used the words tumor, mass, chemo, but not cancer. I told him that he had a certain kind that was very treatable, and went over the treatment course. We spoke about him losing his hair, which is just devastating to him, and we talked about different options he had. I am hoping to be able to get him a wig that matches his hair before he loses it. He is very scared, and we are just heartbroken.
He did receive some very close friends this afternoon which I know made his day. They were able to play xbox in his room which I know he loved, and we are grateful for.
We are crossing our fingers and toes that he can get the chemo tomorrow.
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