Nick just passed his one year anniversary from Treatment!!!! We are thrilled to say that his last check-up went very well. The doctor's are very encouraged by his progress and he has regained all of his weight back. Nick has kept busy this summer with Baseball and Swim Team. He just finished his last meet and was able to take 2 seconds off his time for a very exciting win in his heat. He is now turning his thoughts to the football season which starts in another week.
It has been great to see Nick return to his old self this year. He did really well in 5th grade and was able to re-integrate back into his sports.
A few weeks ago, we got word that another little girl from our area was diagnosed with Medulloblastoma. Julia has undergone surgery and is still recovering. We will do everything we can to help this family, and I would ask that anyone who is still reading this blog, please pray for Julia and her family.
I will provide another update after Nick's next check-up in 3 months.
Sunday, July 25, 2010
Tuesday, January 26, 2010
The Second Check-Up
Nick had is second check-up which consisted of an MRI and Spinal Tap just before the holidays. The MRI of his brain looked good. No sign of any tumor which is great news. His spinal MRI looked good also. There was a small spot that was questionable, but not enough to warrant any further action. Unfortunately, as good as technology is, it is not without its flaws, which leads to some apprehension every time we go through this process. Fortunately the spinal fluid had no abnormal cells which is a positive. So now we will wait another 3 months to the next check-up and hope for the best.
Nick, meanwhile is doing great. He is having a great year in school and continues to amaze us. You would never know that he missed a whole year of school. In his spare time, he is playing basketball and we have enrolled him in Parisi to work on his coordination, speed and agility. One of the lasting effects of the surgery, chemo and long hospitalization is that he has lost a fair amount of muscle mass and this has thrown off his balance and coordination. We are seeing continual improvements and know that it is just a matter of time (and effort) before he is back to his old self.
Now it is back to the normal daily grind for another 3 months until his next check-up. The best way I can summarize it is long stretches of normal, punctuated by a couple of weeks of hell, anticipating the tests and waiting for the results. Fortunately with 3 active kids, there is not a lot of time to dwell on anything for more than a minute before another parenting crisis hits!
I will continue to provide quarterly updates on his check-ups (and hopefully it will stay that way forever!)
Nick, meanwhile is doing great. He is having a great year in school and continues to amaze us. You would never know that he missed a whole year of school. In his spare time, he is playing basketball and we have enrolled him in Parisi to work on his coordination, speed and agility. One of the lasting effects of the surgery, chemo and long hospitalization is that he has lost a fair amount of muscle mass and this has thrown off his balance and coordination. We are seeing continual improvements and know that it is just a matter of time (and effort) before he is back to his old self.
Now it is back to the normal daily grind for another 3 months until his next check-up. The best way I can summarize it is long stretches of normal, punctuated by a couple of weeks of hell, anticipating the tests and waiting for the results. Fortunately with 3 active kids, there is not a lot of time to dwell on anything for more than a minute before another parenting crisis hits!
I will continue to provide quarterly updates on his check-ups (and hopefully it will stay that way forever!)
Thursday, November 12, 2009
I guess I meant it when I said a while!
What can I say, the past few months have been back to the "NORMAL" grind of everyday life. It is hard to believe that we just past the 1 year (i hate to say the word anniversary as that word conjures up feelings of celebration) mark of Nick's ordeal. He has been 5 months out of Chemo and things have been going well (hence the lack of communication on my part). Here are some of the highlights of the past few months:
July- Spent most of the time enjoying the summer and hanging at the pool and/or beach. It was great to power down and get caught up on life again.
August - Football!!!! yes, Nicholas actually played football this season. We were very scared/concerned, but he was determined. He made it through the conditioning phase of the first 2 weeks quite well given the fact that he had only been out of the hospital for 5 weeks. His weight was down and he was weaker than he had been, but this was the best physical therapy there was. He was with his friends and teammates, doing something that he loves (i still remember the day of his surgery, him being concerned about whether or not he would be able to play in his final game that weekend). The season progressed into pads, with full contact and he did remarkably well. He made it all the way through the season (11 games and 14 weeks of practice, 3 nights a week). I am happy to say that he is stronger, faster and his coordination is so much better than when he started back in August. All in all, a very good experience.
September - Back to School! His return was fraught with much apprehension at first, but after the first day, all was well. The teachers and kids were all great and welcomed him back. Most importantly, after the first day, it was as if he never had left. Returning back to a normal life is the greatest pleasure one can know after a year of total chaos.
Now for the great news (saved the best for last). Nick had his first follow-up MRI and Spinal in September (he will go every 3 months for the next several years) and everything came back great. I must say that the week prior to his follow-up is quite stressful, but for now we can live in ignorant bliss until sometime next month!
I will try and post some photos and try to be more diligent (at least every 3 months) in keeping everyone up to date with Nick's on-going results. So many people (some i know, some i have never met) have come up to me and told me how they have been praying for Nick. All I can say is "THANK YOU" all and please don't stop.
July- Spent most of the time enjoying the summer and hanging at the pool and/or beach. It was great to power down and get caught up on life again.
August - Football!!!! yes, Nicholas actually played football this season. We were very scared/concerned, but he was determined. He made it through the conditioning phase of the first 2 weeks quite well given the fact that he had only been out of the hospital for 5 weeks. His weight was down and he was weaker than he had been, but this was the best physical therapy there was. He was with his friends and teammates, doing something that he loves (i still remember the day of his surgery, him being concerned about whether or not he would be able to play in his final game that weekend). The season progressed into pads, with full contact and he did remarkably well. He made it all the way through the season (11 games and 14 weeks of practice, 3 nights a week). I am happy to say that he is stronger, faster and his coordination is so much better than when he started back in August. All in all, a very good experience.
September - Back to School! His return was fraught with much apprehension at first, but after the first day, all was well. The teachers and kids were all great and welcomed him back. Most importantly, after the first day, it was as if he never had left. Returning back to a normal life is the greatest pleasure one can know after a year of total chaos.
Now for the great news (saved the best for last). Nick had his first follow-up MRI and Spinal in September (he will go every 3 months for the next several years) and everything came back great. I must say that the week prior to his follow-up is quite stressful, but for now we can live in ignorant bliss until sometime next month!
I will try and post some photos and try to be more diligent (at least every 3 months) in keeping everyone up to date with Nick's on-going results. So many people (some i know, some i have never met) have come up to me and told me how they have been praying for Nick. All I can say is "THANK YOU" all and please don't stop.
Wednesday, June 24, 2009
Signing off for a While (Hopefully!)
Well the end of our journey (at least for a little while), is finally over. Nick's MRI and lumbar puncture all came back fine. We did get a bit of a scare last week when his blood work came back abnormal. It turns out that the medication used to stimulate his bone marrow to begin reproducing cells worked a little too good and sent his marrow into overdrive. Fortunately this reversed quickly once we stopped giving him the injections and his blood work on Monday was back to normal.
Nick now gets to to have his life back, with no additional testing scheduled until November! He will still need to be monitored (MRI, Lumbar Puncture, etc) every 3 months for the first 3 years, then every six months for the next 2 years and then once a year for the next 5 years (10 years in total). The toughest part is over, but the road ahead is a long one still. Unfortunately curing this disease is not as simple as just taking some medicine and then it is gone. There is no way of knowing for sure if you are cured other than just waiting. There are no tests, just those that can confirm if it has returned. So every three months will will head back to CHOP and hope and pray for good results. There are a lot of happy endings for kids with this disease and we hope to one more.
To Everyone who read about Nick, prayed for Nick, and supported our family through this incredible ordeal, we cannot thank you enough. So many people have told us how this has impacted their lives, in a positive way. You see, it is so easy to take for granted just how lucky we all are and how that can change so quickly. So make the most of every day and take time to appreciate all of the great things around you.
Nick now gets to to have his life back, with no additional testing scheduled until November! He will still need to be monitored (MRI, Lumbar Puncture, etc) every 3 months for the first 3 years, then every six months for the next 2 years and then once a year for the next 5 years (10 years in total). The toughest part is over, but the road ahead is a long one still. Unfortunately curing this disease is not as simple as just taking some medicine and then it is gone. There is no way of knowing for sure if you are cured other than just waiting. There are no tests, just those that can confirm if it has returned. So every three months will will head back to CHOP and hope and pray for good results. There are a lot of happy endings for kids with this disease and we hope to one more.
To Everyone who read about Nick, prayed for Nick, and supported our family through this incredible ordeal, we cannot thank you enough. So many people have told us how this has impacted their lives, in a positive way. You see, it is so easy to take for granted just how lucky we all are and how that can change so quickly. So make the most of every day and take time to appreciate all of the great things around you.
Monday, June 15, 2009
The HomeComing
Nick was able to beat the odds and finish on time again. He and Deb left the hospital on Friday at noon. Now many of you know that there was a lot of preparation going on for the homecoming festivities and there was an extremely narrow window of opportunity to make it all happen.
Well the stars all aligned, the weather cooperated and at 6:30pm Nicholas was surprised with a parade to honor his achievement and success over the past 7 months. To say he was surprised, is probably an understatement, but I think that everyone that was there would agree that the smile on his face when he realized that all of it was for him said it all.
The parade was led by a fire truck and consisted of so many friends, neighbors, classmates and teammates. There were kids from the middle school and high school marching bands, baton twirlers, unicycle riders, decorated tractors, bikes ATVs.
At the end of the parade, the bands played for us while the national anthem was sung by our neighborhood girls. The festivities culminated with Nick receiving a trophy from one of our own local sports celebrities, Pat Devlin.
I think the highlight for me was after the parade and ceremonies were all over, I would look over and see Nick playing ball with all of his friends and teammates, like nothing had ever happened. Just being a kid again with no worries and fear. Watching him laugh and run and play....we couldn't have asked for anything better. Needless to say, he was exhausted by the end and did not want to leave (a family trait), but for once it was a good tired and he fell into his bed with a smile on his face, still talking about how much fun he had.
We can't say thank you enough to everyone who made this day so special. Those who planned it, those who helped and those who participated. This is truly what a community should be like and we are very fortunate to be surrounded by great people.
Well the stars all aligned, the weather cooperated and at 6:30pm Nicholas was surprised with a parade to honor his achievement and success over the past 7 months. To say he was surprised, is probably an understatement, but I think that everyone that was there would agree that the smile on his face when he realized that all of it was for him said it all.
The parade was led by a fire truck and consisted of so many friends, neighbors, classmates and teammates. There were kids from the middle school and high school marching bands, baton twirlers, unicycle riders, decorated tractors, bikes ATVs.
At the end of the parade, the bands played for us while the national anthem was sung by our neighborhood girls. The festivities culminated with Nick receiving a trophy from one of our own local sports celebrities, Pat Devlin.
I think the highlight for me was after the parade and ceremonies were all over, I would look over and see Nick playing ball with all of his friends and teammates, like nothing had ever happened. Just being a kid again with no worries and fear. Watching him laugh and run and play....we couldn't have asked for anything better. Needless to say, he was exhausted by the end and did not want to leave (a family trait), but for once it was a good tired and he fell into his bed with a smile on his face, still talking about how much fun he had.
We can't say thank you enough to everyone who made this day so special. Those who planned it, those who helped and those who participated. This is truly what a community should be like and we are very fortunate to be surrounded by great people.
Friday, June 12, 2009
Heading for Home!
If nothing else, we can say Nick is consistent. Yesterday his counts rebounded from zero to 386 and today he is at 1300. This means that he will be COMING HOME! This time for good. He is feeling well, his weight has been stable and his spirits are good. On Monday, he will have to go back to have his lumbar puncture and then they will remove the Broviac. Hopefully within a couple of days after that, he will have no restrictions and be able to swim, play etc. We will need to continue to monitor his blood counts and platelets, so no rough play for a while, but we now move onto the rehab phase of getting him back into fighting shape. With football around the corner, we have a lot of work to do, but as you have probably noticed from previous entries, Nick is a strong, highly motivated (and most importantly) very positive young man. There is no doubt he will be ready come September!
That's it for now. I will post about the homecoming later this weekend.
That's it for now. I will post about the homecoming later this weekend.
Sunday, June 7, 2009
Sailing on Through
Round 4 has gone as good as we could hope for so far. Nick is nearing the end and doing GREAT! His cell counts hit zero today which means that he is following the same schedule as the last few times. His spirits are good and his energy level is good, so we are hopeful that he will continue to follow that same path and finish up later this week. If all goes well, Nick will be done by week's end, and then back home again.
Once he is finished, he will need to have another MRI and Spinal Tap, and then his Broviac can come out and he will be a free man again! Just in time to hit the pool and start swimming again. I know that he can't wait! We will continue to provide updates throughout the week on cell count progress.
ALMOST THERE!
Saturday, May 30, 2009
The Final Round
On Thursday, Nick and Deb headed back into CHOP to begin the Last and Final Round of his Chemo treatments. While I know that he was excited that this would be it, I think it was also the most difficult. The weather is nice and his brother and sister are finishing up school this week. The pool is open and the last place you want to be is stuck inside the hospital for 2 week!
The good news is that he has made it through the toughest part of the treatment and is doing quite well. He has tolerated the chemo with only slight nausea and a low grade fever. The worst of it is over. Today is hydration day and on Monday, he will receive his stem cells and then the waiting game begins. We are hopeful that he will follow the same routine and be out in a couple of weeks.
We are so very proud of Nick. He has really powered through this, with good spirits and a great attitude. In talking with the oncology staff this week, Deb asked about the protocol and whether or not what we are experiencing is the norm. It turns out that only about 50% of the kids actually make it through the study and others have significant delays due to complications (infections, relapse, etc) that can last months. We are thankful that Nick was able to avoid that hardship.
I also want to mention how proud we are of Samantha and Peter. While i write a lot about Nick and his progress, i feel the obligation to let everyone know how they are both doing. As you can imagine, this whole ordeal has been very difficult for all of us. Sam and Pete have had to endure many late nights at the hospital, constant traveling, and an altogether chaotic schedule. Most weekends were spent at the hospital, along with many nights of us not getting home to after 10pm. Throughout all of this, they were able to juggle school work, sports and increased responsibilities at home. Deb and I are very proud of them both. Never once did they complain, get angry or jealous of the attention Nick would receive. They have been supportive of him throughout and really stepped up big this year.
I will keep everyone updated on his progress over the next few days and look forward to the Count Up (increasing cell counts) to the end of Round 4!
The good news is that he has made it through the toughest part of the treatment and is doing quite well. He has tolerated the chemo with only slight nausea and a low grade fever. The worst of it is over. Today is hydration day and on Monday, he will receive his stem cells and then the waiting game begins. We are hopeful that he will follow the same routine and be out in a couple of weeks.
We are so very proud of Nick. He has really powered through this, with good spirits and a great attitude. In talking with the oncology staff this week, Deb asked about the protocol and whether or not what we are experiencing is the norm. It turns out that only about 50% of the kids actually make it through the study and others have significant delays due to complications (infections, relapse, etc) that can last months. We are thankful that Nick was able to avoid that hardship.
I also want to mention how proud we are of Samantha and Peter. While i write a lot about Nick and his progress, i feel the obligation to let everyone know how they are both doing. As you can imagine, this whole ordeal has been very difficult for all of us. Sam and Pete have had to endure many late nights at the hospital, constant traveling, and an altogether chaotic schedule. Most weekends were spent at the hospital, along with many nights of us not getting home to after 10pm. Throughout all of this, they were able to juggle school work, sports and increased responsibilities at home. Deb and I are very proud of them both. Never once did they complain, get angry or jealous of the attention Nick would receive. They have been supportive of him throughout and really stepped up big this year.
I will keep everyone updated on his progress over the next few days and look forward to the Count Up (increasing cell counts) to the end of Round 4!
Tuesday, May 19, 2009
He did it again!
Nick was able to get home again after just 14 days. Now when we first started the Chemo, everyone told us that each successive treatment usually takes 1-2 days longer than the first. Nick was able to stay on plan and get home in the same amount of time as the first. We are so proud of all that he has accomplished. His positive attitude and determination is a true inspiration to all of us. Many of you have seen him over the past couple of weeks and i think you would agree that he is looking great.
Now usually at this point in the treatment, kids tend to get tired and just physically worn out. Part of it is I am sure psychological, but a lot of it is also physical. Part of the collateral damage of the chemo process is destruction of white blood cells, red blood cells and platelets. The reason for this is that they are all rapidly dividing cells within your body. The mechanism of the chemo drugs is to interfere with the cell division process and destroy the cells during the division process. The premise is that cancer cells are rapidly dividing cells as well, so you can destroy them without harming other normal cells. This means that during the chemo process, Nick's body is depleted of white and red blood cells as well of platelets. This puts him at a higher risk for infection, as well as an increased risk for bleeding. Because of the low RBC count, he is also considered anemic and as a result needs transfusions periodically of blood and platelets. All of this obviously takes its toll on your body and with the diminished RBC count, low energy and lethargy are common.
So how does this affect Nick.....well let's just say he powers through. On Thursday, Nick was released from CHOP in the afternoon. He and Deb came home, only for us to get dressed and turn around to go back in to CHOP for the CHOP Prom! The prom is an annual event held at CHOP for all of the patients and their caregivers. The cafeteria is closed, they decorate the dining hall and bring in a DJ with food and drink. Oh yeah and I forgot to mention that it is a formal affair! Many local clothing companies donate dresses, gowns, suits, etc for the children to wear (and keep). The nursing staff also participate and it is a big party. I spoke to some of the organizers of the event and they said that a lot of the kids that have chronic illnesses and that are hospitalized, miss their proms during this time of year, so they wanted to do something special for them. It was a great time and all of the kids had a good time.
On Saturday, our entire family participated in the Relay for Life, held at the Downingtown West High School. Both Samantha and Peter were on teams and Nick walked as a Survivor. The relay is a 24 hour walk to raise money for the American Cancer Society. There are teams of 10-15 and you walk in groups for 24 hours straight around the track. Everyone pitches tents in the fields and there are games and events going on throughout the day. In the evening, there is a candlelight ceremony to honor and commemorate those lost or battling cancer. Everything went well until the weather decided to no longer cooperate and some severe thunder/lightning storms rolled through around 11pm. We all headed for shelter in the cafeteria for a couple of hours. Now just imagine about 100 sweaty wet kids in a cafeteria with no air conditioning. Needless to say, we left and went home rather than spend the night in the cafeteria. In the end, the remainder of the walk was cancelled due to the esther, but the kids had a great time doing something worthwhile. Nick walked throughout the day with his friends and also participated in the survivor walk. All in all, a very busy few days after just getting released from the hospital. Sunday was a very quiet day with a couple of naps for all of us to re-charge for the coming week.
So now we are back to normal, waiting for the holiday weekend to arrive. We are all looking to some time off to just hang out and relax before we head back in for the FINAL ROUND. Yes, that is correct, we are now nearing the end of this crazy journey that started 6 months ago. A lot has happened during that time, and to be honest, a lot of seems like a dream, well nightmare actually. While some days seemed to last an eternity, I have to say that these 6 months seemed to have gone by so fast. We have had such tremendous support from Friends and Family. It is nice to be rounding the Clubhouse Turn and heading into the Home Stretch!
Now usually at this point in the treatment, kids tend to get tired and just physically worn out. Part of it is I am sure psychological, but a lot of it is also physical. Part of the collateral damage of the chemo process is destruction of white blood cells, red blood cells and platelets. The reason for this is that they are all rapidly dividing cells within your body. The mechanism of the chemo drugs is to interfere with the cell division process and destroy the cells during the division process. The premise is that cancer cells are rapidly dividing cells as well, so you can destroy them without harming other normal cells. This means that during the chemo process, Nick's body is depleted of white and red blood cells as well of platelets. This puts him at a higher risk for infection, as well as an increased risk for bleeding. Because of the low RBC count, he is also considered anemic and as a result needs transfusions periodically of blood and platelets. All of this obviously takes its toll on your body and with the diminished RBC count, low energy and lethargy are common.
So how does this affect Nick.....well let's just say he powers through. On Thursday, Nick was released from CHOP in the afternoon. He and Deb came home, only for us to get dressed and turn around to go back in to CHOP for the CHOP Prom! The prom is an annual event held at CHOP for all of the patients and their caregivers. The cafeteria is closed, they decorate the dining hall and bring in a DJ with food and drink. Oh yeah and I forgot to mention that it is a formal affair! Many local clothing companies donate dresses, gowns, suits, etc for the children to wear (and keep). The nursing staff also participate and it is a big party. I spoke to some of the organizers of the event and they said that a lot of the kids that have chronic illnesses and that are hospitalized, miss their proms during this time of year, so they wanted to do something special for them. It was a great time and all of the kids had a good time.
On Saturday, our entire family participated in the Relay for Life, held at the Downingtown West High School. Both Samantha and Peter were on teams and Nick walked as a Survivor. The relay is a 24 hour walk to raise money for the American Cancer Society. There are teams of 10-15 and you walk in groups for 24 hours straight around the track. Everyone pitches tents in the fields and there are games and events going on throughout the day. In the evening, there is a candlelight ceremony to honor and commemorate those lost or battling cancer. Everything went well until the weather decided to no longer cooperate and some severe thunder/lightning storms rolled through around 11pm. We all headed for shelter in the cafeteria for a couple of hours. Now just imagine about 100 sweaty wet kids in a cafeteria with no air conditioning. Needless to say, we left and went home rather than spend the night in the cafeteria. In the end, the remainder of the walk was cancelled due to the esther, but the kids had a great time doing something worthwhile. Nick walked throughout the day with his friends and also participated in the survivor walk. All in all, a very busy few days after just getting released from the hospital. Sunday was a very quiet day with a couple of naps for all of us to re-charge for the coming week.
So now we are back to normal, waiting for the holiday weekend to arrive. We are all looking to some time off to just hang out and relax before we head back in for the FINAL ROUND. Yes, that is correct, we are now nearing the end of this crazy journey that started 6 months ago. A lot has happened during that time, and to be honest, a lot of seems like a dream, well nightmare actually. While some days seemed to last an eternity, I have to say that these 6 months seemed to have gone by so fast. We have had such tremendous support from Friends and Family. It is nice to be rounding the Clubhouse Turn and heading into the Home Stretch!
Saturday, May 9, 2009
Changing of the Guard
Today is day 10 and I am happy to report that all is well. Nick's cell counts have just about reached 0 and we should start to see him rebound tomorrow or Monday at the latest. If all goes according to plan, we are hopeful that he will be able to come home later in the week. Tomorrow he gets his last dose of chemo and then we wait for his counts to rise. He received his stem cells, ( or as Deb likes to refer to them as the "Nick Starter Package") a few days ago, so he should hopefully rebound quickly.
This time in, we were placed on the transplant side of the floor. The rooms are smaller, positive pressure, rooms primarily used for patients that are having bone marrow transplants. The environment is much different on this side compared to the regular oncology floor. Most of the patients are not allowed to leave their rooms and any visitors have to wear masks. These kids can be here for weeks at a time, confined to their room.
To make things a little more like home, family, friends, and staff help decorate the rooms. You are allowed to paint the windows, hang posters and pictures, anything that makes you more comfortable. Some friends created a poster for Nick of a football field. The fields is broken into quarters, one for each treatment. The field has stands that include some funny pics of friends and family (we added a bit to the pictures to have a little fun).
After 10 days sleeping on a 6' by 3' couch, Deb headed home today for a much needed rest. I am sure Sam and Peter are also happy with the change, even if it is only for one day. I know it is difficult for her to leave, but the good nights sleep will help to re-charge her batteries for the last few days, and besides, tomorrow is Mother's Day and the kids have a special surprise for her!
To all the Mom's out there who read this, Happy Mother's Day. We are looking forward to having no other activities and spending the day together as a family, even if the location is not what we would have hoped for.
This time in, we were placed on the transplant side of the floor. The rooms are smaller, positive pressure, rooms primarily used for patients that are having bone marrow transplants. The environment is much different on this side compared to the regular oncology floor. Most of the patients are not allowed to leave their rooms and any visitors have to wear masks. These kids can be here for weeks at a time, confined to their room.
To make things a little more like home, family, friends, and staff help decorate the rooms. You are allowed to paint the windows, hang posters and pictures, anything that makes you more comfortable. Some friends created a poster for Nick of a football field. The fields is broken into quarters, one for each treatment. The field has stands that include some funny pics of friends and family (we added a bit to the pictures to have a little fun).
After 10 days sleeping on a 6' by 3' couch, Deb headed home today for a much needed rest. I am sure Sam and Peter are also happy with the change, even if it is only for one day. I know it is difficult for her to leave, but the good nights sleep will help to re-charge her batteries for the last few days, and besides, tomorrow is Mother's Day and the kids have a special surprise for her!
To all the Mom's out there who read this, Happy Mother's Day. We are looking forward to having no other activities and spending the day together as a family, even if the location is not what we would have hoped for.
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