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.
Saturday, April 25, 2009
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.
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