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.
Thursday, November 12, 2009
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.
Sunday, May 3, 2009
Round 3 - Never the same thing twice
We were all set to begin round 3 last Monday, when we were notified that there was a scheduling mess-up and that Nick needed to have his lumbar puncture on Monday and would not be able to start his chemo on the same day, especially after what happened last round. This meant that he would not be able to begin Round 3 until Thursday. The good news is that he had a few extra days off. The best news is that the lumbar puncture came back clean, meaning no abnormal cells were found!
So on Thursday, Deb and Nick headed back to CHOP to begin treatment. We are now on Day 4, which is his hydration day before he receives his stem cells tomorrow. The worst of Round 3 is now behind him and we are all breathing a collective sigh of relief. Not to say that this wasn't difficult, but it was a whole lot better than the last time. The drugs really do take their toll and the cumulative effective of receiving them every 4 weeks is noticeable. The best way to put it is that he truly feels like hell for about a week. His blood pressures remained stable this time around, but he did seem to react to the drugs and had a fever of 104 for a couple of days.
So now we start the recovery phase. Deb is ready to get him up and about (she even managed to find a stationary bike that is now a permanent fixture in his room) and back on his feet, walking and getting his school work done. I am sure it will be a welcome change from being in bed for the week.
I will update everyone again later in the week as things progress.
So on Thursday, Deb and Nick headed back to CHOP to begin treatment. We are now on Day 4, which is his hydration day before he receives his stem cells tomorrow. The worst of Round 3 is now behind him and we are all breathing a collective sigh of relief. Not to say that this wasn't difficult, but it was a whole lot better than the last time. The drugs really do take their toll and the cumulative effective of receiving them every 4 weeks is noticeable. The best way to put it is that he truly feels like hell for about a week. His blood pressures remained stable this time around, but he did seem to react to the drugs and had a fever of 104 for a couple of days.
So now we start the recovery phase. Deb is ready to get him up and about (she even managed to find a stationary bike that is now a permanent fixture in his room) and back on his feet, walking and getting his school work done. I am sure it will be a welcome change from being in bed for the week.
I will update everyone again later in the week as things progress.
Saturday, April 25, 2009
Halfway There!
I am happy to say that things have been going as good as we can hope for these days. Nick has been home since Easter weekend and doing great. Last week Nick had an MRI to check on the status and the results came back clear which is great news!
People always ask me, how Nick is doing and how is the rest of the family holding up. I can honestly say that we are all doing pretty well. For sure there have been some ups and downs, but all in all, everyone is doing well.
Nick has been working hard during his off time to get caught up with school work. He had been working several hours a day to catch back up to his class in reading, spelling and math. We are hopeful that by the end of next week, he will be pretty close to caught up. Physically, Nick is also doing quite well. Yesterday, we both went for a 1.5 mile jog down the trail with the dogs and he did very well. He even managed to go out and play a little flag football last night with Peter's team and even caught a pass. Both of these were a tremendous boost to his confidence because i know that he was concerned about how well he would be able to play.
On Wednesday evening, we were able to go see the Phillies play the Brewers. We received the tickets through CHOP and were even treated to going down onto the field during batting practice to meet Brad Lidge (a pitcher for those of you who don't know, although that's hard to imagine given their incredible year last year). It was supposed to be just Nick and Peter, but a family didn't show up and we were all able to go. It was pretty cool and the kids were really excited. The game was wet, cold and fun (in that order).
This weekend is Peter's confirmation (he chose Nicholas as his confirmed name). Next week, Nick has another lumbar puncture on Monday and then we start Round 3 on thursday. I will keep everyone up to date as we get more information.
Have a great weekend.
People always ask me, how Nick is doing and how is the rest of the family holding up. I can honestly say that we are all doing pretty well. For sure there have been some ups and downs, but all in all, everyone is doing well.
Nick has been working hard during his off time to get caught up with school work. He had been working several hours a day to catch back up to his class in reading, spelling and math. We are hopeful that by the end of next week, he will be pretty close to caught up. Physically, Nick is also doing quite well. Yesterday, we both went for a 1.5 mile jog down the trail with the dogs and he did very well. He even managed to go out and play a little flag football last night with Peter's team and even caught a pass. Both of these were a tremendous boost to his confidence because i know that he was concerned about how well he would be able to play.
On Wednesday evening, we were able to go see the Phillies play the Brewers. We received the tickets through CHOP and were even treated to going down onto the field during batting practice to meet Brad Lidge (a pitcher for those of you who don't know, although that's hard to imagine given their incredible year last year). It was supposed to be just Nick and Peter, but a family didn't show up and we were all able to go. It was pretty cool and the kids were really excited. The game was wet, cold and fun (in that order).
This weekend is Peter's confirmation (he chose Nicholas as his confirmed name). Next week, Nick has another lumbar puncture on Monday and then we start Round 3 on thursday. I will keep everyone up to date as we get more information.
Have a great weekend.
Saturday, April 11, 2009
A Strong Finish - End of Round 2
As you all know by now, the second round started out a bit rough. Nick spent 3 days in intensive care recovering from what they believe to have been an infection. At least that is what we are hoping it was, because the alternative is that he had a reaction to the treatment which means that this could happen 2 more times.
Well Nick bounce right back and believe it or not, his first day back from the ICU, he was back to walking his 1.5 miles a day and going to his tutor. You would not have believed that 2 days earlier he was in such bad shape.
According to the staff here, the usual course is that every round is at least 1 day longer than the previous as your body takes longer to recover each time. Given the complications at the beginning, we thought that it may even be longer this time around. If you do the math, this meant Nick wouldn't be home until mid week, next week and he would have to spend Easter in the hospital. We were all disappointed about this, but there really wasn't much that we could do about it, so we set about making plans for Easter at CHOP.
Now those of you that know Deb, know that she is quite the determined gal. It turns out that she must have passed this gene on to Nick. Because even though there wasn't much we could do about it, that didn't mean that Nick couldn't! On Friday his counts started to rise to about 500 and on Saturday they had jumped to 3,900. This means that we are going home today! This is 2 days earlier than last time! People here are amazed and quite honestly, so are we.
So yesterday I set off to Wegman's to buy all the fixings for Easter Dinner. For all the men, and some of the women, out there, just an FYI.....never go to Wegman's 2 days before a holiday. It was madness (John Barton knows what I mean), but for the first time, i didn't really care.
Right now, Nick and I are just sitting around, waiting to be discharged so we can get home. We will have to come back early next week for some tests, but then we get to spend spring break together as a family. Timing is everything!
Happy Easter to everyone!
Well Nick bounce right back and believe it or not, his first day back from the ICU, he was back to walking his 1.5 miles a day and going to his tutor. You would not have believed that 2 days earlier he was in such bad shape.
According to the staff here, the usual course is that every round is at least 1 day longer than the previous as your body takes longer to recover each time. Given the complications at the beginning, we thought that it may even be longer this time around. If you do the math, this meant Nick wouldn't be home until mid week, next week and he would have to spend Easter in the hospital. We were all disappointed about this, but there really wasn't much that we could do about it, so we set about making plans for Easter at CHOP.
Now those of you that know Deb, know that she is quite the determined gal. It turns out that she must have passed this gene on to Nick. Because even though there wasn't much we could do about it, that didn't mean that Nick couldn't! On Friday his counts started to rise to about 500 and on Saturday they had jumped to 3,900. This means that we are going home today! This is 2 days earlier than last time! People here are amazed and quite honestly, so are we.
So yesterday I set off to Wegman's to buy all the fixings for Easter Dinner. For all the men, and some of the women, out there, just an FYI.....never go to Wegman's 2 days before a holiday. It was madness (John Barton knows what I mean), but for the first time, i didn't really care.
Right now, Nick and I are just sitting around, waiting to be discharged so we can get home. We will have to come back early next week for some tests, but then we get to spend spring break together as a family. Timing is everything!
Happy Easter to everyone!
Friday, April 3, 2009
Back on Track
I am glad to say that yesterday was a much better day. When i got to the hospital, Nick was sitting up in bed and looking much better than he had the previous two days. By the end of the day, he was no longer receiving epinephrine and norepinephrine and they had already cut the dopamine dosage in half. All of his vital signs remained stable, so it appears we are our of the woods for now. Him and Deb were actually able to take a walk around the floor (IV pole and all). We are pretty sure that he will be moved out of the ICU today and back to the oncology floor.
The best news for Nick is that he can finally eat and drink again. He has not been able to take anything in since early Monday due to the various medications he was on. It turns out that the aforementioned drugs (called catecholamines) are vasoconstrictors and help divert the blood to only the essential organs. Therefore, any food or drink in his stomach would make him sick since he would not have the ability to digest it properly. So today I was provided with a list of foods to bring in now that he is able to eat again.
Yesterday he did receive his stem cells, so now we will just begin the waiting process for his cell counts to come back. I am off to the hospital now. I will keep everyone posted on his progress.
The best news for Nick is that he can finally eat and drink again. He has not been able to take anything in since early Monday due to the various medications he was on. It turns out that the aforementioned drugs (called catecholamines) are vasoconstrictors and help divert the blood to only the essential organs. Therefore, any food or drink in his stomach would make him sick since he would not have the ability to digest it properly. So today I was provided with a list of foods to bring in now that he is able to eat again.
Yesterday he did receive his stem cells, so now we will just begin the waiting process for his cell counts to come back. I am off to the hospital now. I will keep everyone posted on his progress.
Wednesday, April 1, 2009
The Scare of Nick's Life
Well we began Round 2 on Monday morning. Deb and Nick arrived around 9am and spent the first few hours waiting. Waiting for the blood work, waiting for the doctor's, waiting for a room. Finally around 4 pm, Nick began to receive his treatments. All went well for the first 12 hours.
Sometime during the night, Nick's temperature began to creep up and we started to fear that he may have an infection. By mid day on Tuesday, Nick's temp had hit 104 and his blood pressure had dropped to a dangerously low level. The fear of a systemic blood infection was real. Since Nick was already into his course of chemo, this meant that he had a limited ability to fight the infection, so they began to aggressively treat him as if this were a life threatening issue. He was immediately brought up to the intensive care unit and put on numerous drugs to try and get his blood pressure up to normal levels. These included dopamine, norepinephrine and epinephrine. These are naturally occurring chemicals in your body that are usually released during times of stress, like when you are scared. The doctor equated these medications to Nick medically receiving "the scare of his life". Deb and I can attest to the fact that it was one of the biggest scare of our lives. It actually becomes surreal to see. One minute it is relatively calm and then all of a sudden there are over a dozen people in the room, doctors, oncologists, pharmacists, nurses, etc. I have to say that for all that was going on, putting in multiple IV's drugs, transferring to a different floor, it was relatively calm. To see him hooked up to several IV's with a combination of 8 different drugs running is something I hope we never have to see again.
The good news is that by this morning, Nick was back to his normal self. His pressures were stable, his fever down and he was constantly complaining about all of the stuff attached to him. Complaining is a good sign and today they hope to ween him off of the meds and hope that his body picks up where it left off yesterday. We are still waiting for the results of the blood culture to see what the infection was or whether or not this was some reaction to the chemo drugs. So for today, they have decided to suspend his cyclophosphamide treatment so as not to stress his body any more than necessary. He will remain in the ICU for another day just to make sure he is stable and then he will hopefully be able to move back downstairs and regain some of his freedom. I know that both he and Deb are looking forward to their daily walks around the hallways.
I will keep you all posted on his progress over the next few days.
Sometime during the night, Nick's temperature began to creep up and we started to fear that he may have an infection. By mid day on Tuesday, Nick's temp had hit 104 and his blood pressure had dropped to a dangerously low level. The fear of a systemic blood infection was real. Since Nick was already into his course of chemo, this meant that he had a limited ability to fight the infection, so they began to aggressively treat him as if this were a life threatening issue. He was immediately brought up to the intensive care unit and put on numerous drugs to try and get his blood pressure up to normal levels. These included dopamine, norepinephrine and epinephrine. These are naturally occurring chemicals in your body that are usually released during times of stress, like when you are scared. The doctor equated these medications to Nick medically receiving "the scare of his life". Deb and I can attest to the fact that it was one of the biggest scare of our lives. It actually becomes surreal to see. One minute it is relatively calm and then all of a sudden there are over a dozen people in the room, doctors, oncologists, pharmacists, nurses, etc. I have to say that for all that was going on, putting in multiple IV's drugs, transferring to a different floor, it was relatively calm. To see him hooked up to several IV's with a combination of 8 different drugs running is something I hope we never have to see again.
The good news is that by this morning, Nick was back to his normal self. His pressures were stable, his fever down and he was constantly complaining about all of the stuff attached to him. Complaining is a good sign and today they hope to ween him off of the meds and hope that his body picks up where it left off yesterday. We are still waiting for the results of the blood culture to see what the infection was or whether or not this was some reaction to the chemo drugs. So for today, they have decided to suspend his cyclophosphamide treatment so as not to stress his body any more than necessary. He will remain in the ICU for another day just to make sure he is stable and then he will hopefully be able to move back downstairs and regain some of his freedom. I know that both he and Deb are looking forward to their daily walks around the hallways.
I will keep you all posted on his progress over the next few days.
Wednesday, March 18, 2009
Nick Takes Round 1
If this were a boxing match, it would be a unanimous decision by the judges that Nick took Round 1! Just 2 weeks after starting, Nick was able to come home. The average time is usually about 21 days before individuals cell counts have returned to a safe level. Nick managed to do it in just 14 days. Maybe it's the luck of the Irish (or that Deb was determined to be home for St. Patrick's Day!) or the fact that Nick remained active throughout his treatment and therefore was able to fight back harder than most. Either way, the doctor's were all amazed and we were thrilled.
We are now looking forward to a couple of weeks back home, with just day trips back to CHOP for tests and check-ups. Round 2 starts March 30th, so until then, we will enjoy the time off for good behavior.
We are now looking forward to a couple of weeks back home, with just day trips back to CHOP for tests and check-ups. Round 2 starts March 30th, so until then, we will enjoy the time off for good behavior.
Thursday, March 12, 2009
Still Waiting
Today was the last day of chemo for the first round. today was also the first time that Nick's cell counts hit zero. This means that he is now neutropenic and does not have any white blood cells available to fight infection. His platelet count is also significantly decreased. Fortunately, his hemoglobin counts have remained high enough so that he has not yet needed a transfusion. We are hoping that will remain the case.
So now we wait and wait and wait. It takes 7-10 days for the stem cells to engraft and begin the process of re-populating his red blood cells, white blood cells and platelets. We have no idea how long it will actually take, but once his cell count gets up above 2000, he should be able to come home for a bit.
You might think that Deb and Nick would be pretty bored, but those of you that know Deb, will appreciate that their day is anything but boring. The day starts with breakfast, and then some school work. Mid morning, there is usually an art class or activity going on and then it is time for lunch. After lunch, Nick has school for an hour where he works with an in house teacher on his work sent home from Brandywine Wallace. After lunch, Nick and Deb do 16 laps around the hallways (this is equal to 1 mile based on Nick's pedometer). After his walk, he has either occupational therapy or physical therapy (today was yoga). Later in the day Deb and Nick will play games (we even have wiffle ball in the room), learn Spanish (they have the Rosetta Stone for Spanish) or do more school work before dinner. A pretty full day given the circumstances. I do have to say that even the staff is very impressed with the level of activity he is able to maintain throughout this entire ordeal. Deb is determined to make the most she can out of this all.
The other day, Nick had some very impressive visitors come by to say hello and give him their best wishes (actually they were their to visit all of the children, but he can dream). I have included a photo of Nick with his special guests. I can tell you he was not to keen on having to take the picture, but my guess is that in a few years he would kill for this opportunity again!
So everything is going as good as we can hope for. I will continue to provide updates regarding Nick's progress. Thanks for keeping us in your thoughts!
So now we wait and wait and wait. It takes 7-10 days for the stem cells to engraft and begin the process of re-populating his red blood cells, white blood cells and platelets. We have no idea how long it will actually take, but once his cell count gets up above 2000, he should be able to come home for a bit.
You might think that Deb and Nick would be pretty bored, but those of you that know Deb, will appreciate that their day is anything but boring. The day starts with breakfast, and then some school work. Mid morning, there is usually an art class or activity going on and then it is time for lunch. After lunch, Nick has school for an hour where he works with an in house teacher on his work sent home from Brandywine Wallace. After lunch, Nick and Deb do 16 laps around the hallways (this is equal to 1 mile based on Nick's pedometer). After his walk, he has either occupational therapy or physical therapy (today was yoga). Later in the day Deb and Nick will play games (we even have wiffle ball in the room), learn Spanish (they have the Rosetta Stone for Spanish) or do more school work before dinner. A pretty full day given the circumstances. I do have to say that even the staff is very impressed with the level of activity he is able to maintain throughout this entire ordeal. Deb is determined to make the most she can out of this all.
The other day, Nick had some very impressive visitors come by to say hello and give him their best wishes (actually they were their to visit all of the children, but he can dream). I have included a photo of Nick with his special guests. I can tell you he was not to keen on having to take the picture, but my guess is that in a few years he would kill for this opportunity again!
So everything is going as good as we can hope for. I will continue to provide updates regarding Nick's progress. Thanks for keeping us in your thoughts!
Thursday, March 5, 2009
The Beginning of Phase 3 - Chemotherapy
On Monday, Nick went to CHOP at 6am to begin the next phase of his treatment. Deb and Nick braved the snow storm and drove into the city at 5 am for his 6am appointment. For those of you who were up at 5am, (hopefully nobody), there was amazingly a break in the storm and there was actually no snow for the trip to the city.
The first step was an operation to insert a Broviac Catheter. This catheter is inserted into a major vein located in Nick's Chest. This line will be used to infuse the various medications directly into his blood stream to be distributed throughout his body. The line will remain in for the next four months until all of the treatments are over.
After Nick recovered from his anesthesia, he came back to his room to recover and get ready to receive his first round of chemo treatments. We are happy to say that Nick has fared quite well during this first course of treatment. One drug in particular, amifostine, is supposed to be very hard on your stomach and almost always causes nausea. Nick managed to get through this with minimal sickness (about 95% have pretty severe discomfort with this drug). He has had some nausea, and no appetite, but today is a recovery day with no drugs and he seems to be doing better. On Friday Nick will get his stem cell rescue and we will begin the recovery period which could last up to 2 weeks. The past few days have been pretty hard. While the past 6 weeks were a nice respite, it is mentally difficult to be back in the hospital and feeling so lousy. To help with this transition, Deb had a great idea. Last week Deb took Nick to see a doctor who specializes in self-hypnosis. The idea is that through the power of positive suggestion, Nick would be able to create a place inside his own head where he could go when times were tough. It seemed to have worked as Nick was able to rest fairly peacefully during the worst of the treatment.
As I type, Nick is catching up on his homework so as not to get too far behind his class. I know that he misses school and seeing all of his friends and this is a way that he can stay somewhat connected to them all. If anyone wants to drop Nick a note, please feel free to send him an email at nickc27@comcast.net.
The first step was an operation to insert a Broviac Catheter. This catheter is inserted into a major vein located in Nick's Chest. This line will be used to infuse the various medications directly into his blood stream to be distributed throughout his body. The line will remain in for the next four months until all of the treatments are over.
After Nick recovered from his anesthesia, he came back to his room to recover and get ready to receive his first round of chemo treatments. We are happy to say that Nick has fared quite well during this first course of treatment. One drug in particular, amifostine, is supposed to be very hard on your stomach and almost always causes nausea. Nick managed to get through this with minimal sickness (about 95% have pretty severe discomfort with this drug). He has had some nausea, and no appetite, but today is a recovery day with no drugs and he seems to be doing better. On Friday Nick will get his stem cell rescue and we will begin the recovery period which could last up to 2 weeks. The past few days have been pretty hard. While the past 6 weeks were a nice respite, it is mentally difficult to be back in the hospital and feeling so lousy. To help with this transition, Deb had a great idea. Last week Deb took Nick to see a doctor who specializes in self-hypnosis. The idea is that through the power of positive suggestion, Nick would be able to create a place inside his own head where he could go when times were tough. It seemed to have worked as Nick was able to rest fairly peacefully during the worst of the treatment.
As I type, Nick is catching up on his homework so as not to get too far behind his class. I know that he misses school and seeing all of his friends and this is a way that he can stay somewhat connected to them all. If anyone wants to drop Nick a note, please feel free to send him an email at nickc27@comcast.net.
Monday, March 2, 2009
Hoops For Hope
The Hoops for Hope Event this past Sunday was an incredible success. Given the short amount of time to get everything organized, things could not have gone better....even the weather cooperated and the snow held off until later in the evening. This event was to raise money to benefit Children's Hospital childhood cancer research center. I am proud to say that in one afternoon, we were able to raise over $8,000 for this great cause.
While it is great to be able to raise this kind of money to help a worthwhile cause, I think it would be prudent to mention some of the other intangible benefits of such and event. First of all, I don't think any of us realized just how many people's lives we had touched over the last 13 years. To see hundreds of kids, almost all of whom we know, out there having fun and playing together was great to see. I also think that this event was helpful to all of the families who think about our situation, want to help, but just don't know what they can do. This was a way for everyone to rally, help out and be part of something a little bit bigger. I also know that this event had a profound impact on many of the children there. These children are able to connect with a peer who is going through a very difficult time and they are able to reach out and do something nice for someone that needs their help. I think that for some of these children, they are able to learn a very valuable life lesson about empathy, community and friendship. If I could say that there is anything positive that could come from such a terrible thing, it would be how our situation has touched so many people's lives and hopefully made them better because of it.
I would be remiss if I did not thank certain individuals for their tireless effort in making this event such a success. They were the inspiration behind the event and did EVERYTHING to make it happen. Thanks to Mary Ferrer, Eleanor McNulty, Mike Gallagher, Brian Manning and Brian Roselli, for taking time out of their very busy lives. I also want to thank all of the parents, teachers and friends who helped out all afternoon long to make sure that the kids all had a great time. And lastly, i would like to thank all of the individuals and local businesses that generously donated items for our auction and raffle.
Here is a link to the article in the Daily Local News about the event. Hoops for Hope Article
Here is a link to some photos from the event. Hoops for Hope Photos
Thursday, February 26, 2009
The Calm before the Storm
As I mentioned in the last entry, this week was back to reality for Nick and the rest of us. The week started out tuesday with a hearing test, pulmonary function test and then an MRI of his brain and spine. Today was a grueling 9 hour day which consisted of numerous doctor consults and a lumbar puncture (most unpleasant). All of this is in preparation for his chemotherapy treatments which begin next week, but more about that in a bit.
We also received some good news today. First were the results of his hearing test, which were all normal. This means 2 things. First, that there was minimal damage caused by the radiation treatment, and second that Nick really can hear us when we ask him to do things and he just ignores us. For those of you who have adolescent/teen children, you may want to consider this test just to confirm that they really can hear you and just choose not to listen!
The most important results were those of the MRI and Lumbar Puncture. We are thrilled to be able to say that the MRI showed no visible signs of residual tumor and the lumbar puncture too showed no malignant cells. It appears that the radiation did it's job well. We are now hoping that the chemo will take care of any remaining tumor cells which might be lurking about. Needless to say we were all thrilled as this was a very anxious moment for all of us for up until now, we really had no idea what the outcome of the radiation treatment would be.
So now we forge on to the 3rd and final phase of treatment, Chemotherapy. This will begin early on Monday morning with them putting in a double boviac port. This is basically a multi-port tube that they insert into one of the veins in his neck. This will remain their for the entire course of his treatment (4 months) for them to administer his medications, give IV fluids and draw blood. Nick will also begin his chemo treatments on Monday. The schedule will be something like 4 days of intensive chemotherapy, followed by re-introduction of his stem cells that were harvested back in November. It will take 1-2 weeks for the stem cells to nest and proliferate such that his cell counts will return to normal. Nick will then be able to come home for a few days before he has to go back in for another round. He will have to repeat this 4 times in all, which equates to about 4 months. The drugs are pretty nasty (Vincristine, Cisplatin, Amifostine, Mesna and cylclophosphamide) Any one of these drugs are pretty potent and have some tough side effects. All of them combined will be really hard on him.
On a lighter note, this Sunday there will be a fundraising event to support childhood cancer research. The event is hoops for hope and was organized by friends and neighbors. The event will take place Sunday from 4 to 7pm at the Downingtown Middle School. Children will be "shooting for a cure" by making free throws, lay-ups, 3 pointers and half court shots. Our hope is to raise awareness of childhood cancer and to raise critical funds for on-going clinical research. Because these types of tumors are so rare (approximately 500 cases per year in the US), there is not a lot of funding available. We are thrilled to be a part of this event and grateful to everyone who has helped plan and organize this event. I hope to have some great photos to post next week when I provide my next update.
We also received some good news today. First were the results of his hearing test, which were all normal. This means 2 things. First, that there was minimal damage caused by the radiation treatment, and second that Nick really can hear us when we ask him to do things and he just ignores us. For those of you who have adolescent/teen children, you may want to consider this test just to confirm that they really can hear you and just choose not to listen!
The most important results were those of the MRI and Lumbar Puncture. We are thrilled to be able to say that the MRI showed no visible signs of residual tumor and the lumbar puncture too showed no malignant cells. It appears that the radiation did it's job well. We are now hoping that the chemo will take care of any remaining tumor cells which might be lurking about. Needless to say we were all thrilled as this was a very anxious moment for all of us for up until now, we really had no idea what the outcome of the radiation treatment would be.
So now we forge on to the 3rd and final phase of treatment, Chemotherapy. This will begin early on Monday morning with them putting in a double boviac port. This is basically a multi-port tube that they insert into one of the veins in his neck. This will remain their for the entire course of his treatment (4 months) for them to administer his medications, give IV fluids and draw blood. Nick will also begin his chemo treatments on Monday. The schedule will be something like 4 days of intensive chemotherapy, followed by re-introduction of his stem cells that were harvested back in November. It will take 1-2 weeks for the stem cells to nest and proliferate such that his cell counts will return to normal. Nick will then be able to come home for a few days before he has to go back in for another round. He will have to repeat this 4 times in all, which equates to about 4 months. The drugs are pretty nasty (Vincristine, Cisplatin, Amifostine, Mesna and cylclophosphamide) Any one of these drugs are pretty potent and have some tough side effects. All of them combined will be really hard on him.
On a lighter note, this Sunday there will be a fundraising event to support childhood cancer research. The event is hoops for hope and was organized by friends and neighbors. The event will take place Sunday from 4 to 7pm at the Downingtown Middle School. Children will be "shooting for a cure" by making free throws, lay-ups, 3 pointers and half court shots. Our hope is to raise awareness of childhood cancer and to raise critical funds for on-going clinical research. Because these types of tumors are so rare (approximately 500 cases per year in the US), there is not a lot of funding available. We are thrilled to be a part of this event and grateful to everyone who has helped plan and organize this event. I hope to have some great photos to post next week when I provide my next update.
Sunday, February 8, 2009
Fun while it lasted
I have to say that the past couple of weeks have been great. We slipped into our normal routines of every day life, put the past behind us, and tried hard not to think of the near future. As you can tell, the past couple of weeks have been relatively calm, with some notable, positive, exceptions.
First of all, Nick is doing really well. He has lost a fair amount of weight, but he seems to be putting some of that back on. We are trying hard to bulk him up before he goes in for his chemo treatments, so it is lots of potatoes, pasta and fried foods (needless to say it is not helping me any, although Deb seems to be able to show more restraint).
Last week, the children at Shamona Creek Elementary School held a community service day where many of the children sewed pillowcases from fabric that they picked out. These pillowcases are then donated to Children's Hospital for kids who have extended stays in the hospital. The organization is call Con Kerr and was started by a mom who sewed pillowcases for her child when she was in the hospital. She then began sewing them for other children and so it began. When nick was in CHOP for his surgery, he received a couple of pillowcases himself and he still has them. I was not there during the school day, but from what I understand, there were several moms there with their sewing machines helping out throughout the day. The kids made over 200 pillowcases that will be donated this coming week. After school, Nick and some of his fellow teammates from his football team went over to the school to make some pillowcases as well. Thanks to everyone that helped this worthy cause. I have attached a couple of pictures.
First of all, Nick is doing really well. He has lost a fair amount of weight, but he seems to be putting some of that back on. We are trying hard to bulk him up before he goes in for his chemo treatments, so it is lots of potatoes, pasta and fried foods (needless to say it is not helping me any, although Deb seems to be able to show more restraint).
Last week, the children at Shamona Creek Elementary School held a community service day where many of the children sewed pillowcases from fabric that they picked out. These pillowcases are then donated to Children's Hospital for kids who have extended stays in the hospital. The organization is call Con Kerr and was started by a mom who sewed pillowcases for her child when she was in the hospital. She then began sewing them for other children and so it began. When nick was in CHOP for his surgery, he received a couple of pillowcases himself and he still has them. I was not there during the school day, but from what I understand, there were several moms there with their sewing machines helping out throughout the day. The kids made over 200 pillowcases that will be donated this coming week. After school, Nick and some of his fellow teammates from his football team went over to the school to make some pillowcases as well. Thanks to everyone that helped this worthy cause. I have attached a couple of pictures.
A lot of people have been asking whether or not Nick is going back to school. The short answer to that is no. Unfortunately, Nick will need to have a series of tests (MRI, CT Scan, Spinal Tap, X-Rays, etc) over the next couple of weeks. The beginning of March, he will then begin the final phase of his treatment, chemotherapy. While he may not be in school everyday, we do try to keep him occupied. He is taking a pottery class with his mom and Nick and I try to go to the gym a few days a week to play basketball and/or swim. He also has to do a couple of hours of schoolwork each day so that he can try to keep up with his class. I think Nick would admit that he would rather have Mrs. DiMartin as a teacher than me. I am sure it is not easy since we don't really teach him. We give him the work, his book and then answer questions if he has any. It's kind of like taking a correspondence course, except he is only 10. We did make a surprise visit last week to his class. I am sure they were all glad to see Nick, and although he was a bit nervous, I know that he was happy to see them all as well.
Last week's snow day was a very welcomed surprise for all of us (especially Samantha and Peter). We took advantage of the day off to head up to Bear Creek to do a little bit of skiing. The timing could not have been any better. After Nick's surgery, he was told that he needed to "keep both feet on the ground", meaning no contact sports, etc. Well that snow day happened to fall exactly on his 3 month anniversary! We didn't know what to expect, but lo and behold, he hit the slopes without missing a beat. We spent about 5 hours skiing the entire mountain before calling it quits. Since D'Town was the only school district off that day, the slopes were empty, which ensured wide open slopes, no lift lines and numerous runs.
Today we spent a couple of hours with Nick's football team playing basketball at the YMCA. It was great to see all of the boys again. It was even better seeing them all playing together as if nothing had ever happened. We were curious to see how Nick would do as well as how he would be treated by his team. We were happy to see that, while everyone was glad to see him, he was treated just like any of the other kids and they all had a great time. Thanks to the Lionville YMCA for allowing us to have the use of their gym this Sunday afternoon.
So, our 2 week hiatus is coming to a close. This Thursday we are back at CHOP for a check-up and to schedule the aforementioned tests before the beginning of March. It was nice to have this time together as a family to just relax and enjoy each other. I will keep everyone up to date over the next couple of weeks as we get more information.
Wednesday, January 21, 2009
Another Milestone Completed!
I am glad to say that Nick's final treatment went without a hitch and he is now resting comfortably at home. It has been a long six weeks and even longer 11 weeks (Nick had only been home 8 days in the past 11 weeks). While the sunny and warm weather of Florida was nice, it sure is nice to be back home again. It was even nicer to come home to a little bit of snow! We arrived home late last night, weary from a long day (both physically and emotionally). It was nice to have all 3 kids back home again (we even welcome the bickering and bantering of siblings as they jockey for position in the bathroom, or argue over who gets the syrup first). Nick was so excited to see snow that all 3 of them went out right after breakfast, still dressed in their PJ's, to play for a bit before getting ready for school. With the temps hovering around a balmy 15 degrees (It was 67 in Jacksonville yesterday), the frolicking did not last very long.
While I am here with the kids, Deb will begin the long journey back from Jacksonville. If you remember, we drove down, just after Thanksgiving. She will be driving back, with Mary Ferrer riding shot-gun, and a packed car full of stuff. It is amazing what you can accumulate in just a mere 6 weeks. Anyone who has ever seen Mary and Deb together, will certainly appreciate how interesting that car ride will be. Personally, i wanted to record the whole thing since i am sure there would be enough material to write a couple of best selling novels. I will leave it to them though to fill you in on how the trip went.
We now will begin to re-integrate back into our normal routine, at least for the next 6 weeks. We are very much looking forward to some time off without doctor's visits, plane rides, etc to re-group as a family and just face the normal drudgery of every day life (oh how appealing that sounds).
As for Nick, he survived the radiation treatments well, with only some loss of hair and a tan line down his back. He is very excited to be back home. I will try and update things every week or so over the next several weeks, but hopefully there will be not much to tell other than everything is OK. Thanks to all who continue to follow Nick's progress. Your hopes and prayers are very much appreciated.
While I am here with the kids, Deb will begin the long journey back from Jacksonville. If you remember, we drove down, just after Thanksgiving. She will be driving back, with Mary Ferrer riding shot-gun, and a packed car full of stuff. It is amazing what you can accumulate in just a mere 6 weeks. Anyone who has ever seen Mary and Deb together, will certainly appreciate how interesting that car ride will be. Personally, i wanted to record the whole thing since i am sure there would be enough material to write a couple of best selling novels. I will leave it to them though to fill you in on how the trip went.
We now will begin to re-integrate back into our normal routine, at least for the next 6 weeks. We are very much looking forward to some time off without doctor's visits, plane rides, etc to re-group as a family and just face the normal drudgery of every day life (oh how appealing that sounds).
As for Nick, he survived the radiation treatments well, with only some loss of hair and a tan line down his back. He is very excited to be back home. I will try and update things every week or so over the next several weeks, but hopefully there will be not much to tell other than everything is OK. Thanks to all who continue to follow Nick's progress. Your hopes and prayers are very much appreciated.
Friday, January 16, 2009
Heading for the Finish Line!
Today marks the 29th treatment......that means only 1 more to go! Unfortunately the way the timing worked out, this treatment won't happen until next Tuesday (monday being a holiday and all). As much as we would have liked to have the weekend to pack up and head home, we have decided to make the most of it and are all heading to Florida for the long weekend (and escaping this insanely cold weather!). Nicholas is very excited to be coming home. It's hard to believe, but he has only been home a total of 6 days since October. I know he is missing all of his friends and we are hoping that over the coming weeks, we will be able to catch up with everyone we haven't seen in a while.
Once the radiation treatment has ended, Nick will have about a 6 week break before he begins the final phase of his treatment (chemotherapy). This will be the toughest part, but at least it will be done at CHOP and there won't be as much traveling involved. I do know that Samantha, Peter and I are really looking forward to having Nick and Deb back home and getting our whole family under 1 roof again.
Everytime Deb or I see folks, they all ask whether or not there is anything that they can do to help. To be honest, right now things are going as well as we can hope. Since most of the time, we have been traveling, we have not been around much ourselves. We greatly appreciate everyone's concern, and willingness to help out. Most importantly, we ask that everyone keep Nick in their thoughts and prayers as we continue on this journey to recovery.
I look forward to the next posting when we are all back together in PA!
Once the radiation treatment has ended, Nick will have about a 6 week break before he begins the final phase of his treatment (chemotherapy). This will be the toughest part, but at least it will be done at CHOP and there won't be as much traveling involved. I do know that Samantha, Peter and I are really looking forward to having Nick and Deb back home and getting our whole family under 1 roof again.
Everytime Deb or I see folks, they all ask whether or not there is anything that they can do to help. To be honest, right now things are going as well as we can hope. Since most of the time, we have been traveling, we have not been around much ourselves. We greatly appreciate everyone's concern, and willingness to help out. Most importantly, we ask that everyone keep Nick in their thoughts and prayers as we continue on this journey to recovery.
I look forward to the next posting when we are all back together in PA!
Tuesday, January 6, 2009
Heading for the Home Stretch
Nick is into his last third of his radiation treatments! Aside from being close to the end, this also means that his treatments will now only consist of the boost to the original tumor bed in brain as well as the tumor site in his spine. Hopefully since they no longer need to do his entire brain and spine, the treatment time should be a little bit less.
The entire family joined Nick in Florida for the New Year. We decided to take a trip to Orlando to see our favorite mouse. Boy was it crazy! The Magic Kingdom stopped admitting people by 11am! We tried hard to avoid the crowds and actually headed to the hotel early New Years Eve. Our goal was to get an early start on New Years Day while the majority of the people nursed their ailments caused from the previous nights festivities. Fortunately for us, one of the girls at the hospital had a brother who worked at Disney and they were able to secure a pass for us. This pass is equivalent to the "Keys to the Kingdom". It allowed us to get priority boarding on the rides, avoiding most of the lines (some of which approached 3 hours). I don't know how we would have fared had we not had this magical piece of paper. I have included a couple of pictures (much to the dismay of Samantha).
Many of you that we were able to see over the holiday, commented on how great Nick looked and how well he seemed to be doing. Well, he is doing great. He is a bit more tired than usual, but overall, he is holding up well. We too were amazed, and thought that all of the stuff we heard about the side effects of radiation just may not apply to Nick.....well of course we were wrong. A couple of days after Christmas, Nick started to notice a lot of hair on his pillow in the mornings. Each day, more and more hair started to fall out. It got so bad that even brushing his hair was impossible. This is a common side effect of the radiation treatment and should not be permanent. We have left it up to him as to whether or not he wants to shave his head completely. He has yet to decide, so for now he is wearing a hat all of the time. His initial reaction to losing his hair was pretty tough, especially after all that has gone on, but after a few days he seems to be handling it as well as he can. When the doctor asked him if he was losing his hair, he just reached up, grabbed a bunch, pulled and handed it to him without saying anything. I think that answered his question.
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