Need we say more?
Antibody is finished, the temporary line in his groin has been taken out and he will be heading home tomorrow.
Now things get interesting....
Thursday, February 12, 2009
Wednesday, February 11, 2009
Fortune Cookie Says...
Well, we're certainly on the same page now.... I am at the hospital this week with Andrew and have been meaning to write. I signed on to post just now and, lo and behold, Cynthia had just made her post. That must be teamwork. I will try not to be redundant.
Before I continue, I do have to say that I have received all of your notes, cards, messages, posts, etc. expressing your sympathy, support and love over the passing of my dad. I am grateful for all of them and sincerely thank you. It goes without saying that this is an incredibly difficult and bittersweet time for me--for us--and I appreciate you thinking of me. Like Cynthia, I have not been here to post for the last few weeks, because it was simply too hard to come here. Never would I have thought that a blog to write about my sick son would turn into a place to post my dad's (premature) obituary. I am posting tonight, because you deserve an update on Andrew and because we are at such a pivotal and optimistic time. I do feel like I will eventually post here about my dad, but it is all a bit too raw and unprocessed at the moment.
Cynthia already gave a rundown of the week and how Andrew has been handling everything: It has been pretty manageable, he has been in overall good spirits, and the bottom line is that we are now one day away from completing treatment. Well, at least hospital-bound treatment. As Cynthia mentioned, Andrew will have oral meds at home for at least another six months, but that seems strangely light and easy compared to what we have been through. We have been at this for over a year now and we are exhausted, yet looking ahead to what next week looks like and the week after that and the week after that, it's hard not to get excited at all the UNINTERRUPTED living we will actually be doing: We will all be sleeping under one roof together next week and the week after and the week after; Andrew will be able to string together whole weeks of school, followed by more whole weeks of school; we will be able to plan family outings and trips on the weekends; we will stop dragging out and delaying getting a family pet; Lucia will stop feeling left out and isolated by her brother's illness and care....
In other words, we are about to embark on life "post-cancer." Of course, as we are reminded constantly, Neuroblastoma is a nasty, angry, bitter cancer and it likes to come back--typically within two years. So, we are not naive. We are not ignorant. We will be living, but it will be impossible not to have one eye looking back over our shoulder, watching, waiting, wondering if there is a relapse in store for Andrew and for us. We are excited for life now and we are cautiously optimistic, but we respect this disease enough to carry a deep sense of dread as we tip-toe through the coming weeks, then months, then (touch wood) years.
I have to close with this: On Monday, Uncle Vince and Uncle Dave brought Andrew his favorite hospital dinner--Chinese noodles with soy sauce and lots and lots of fortune cookies. Andrew loves to eat fortune cookies and when he does, he asks me to read the fortunes to him. Of course, he never understands them and then always asks me to explain them. Well, he got one that needed no explanation: You will live a long, prosperous life. Not to pin too much hope on a fortune cookie, but the unfortunate thing was that he ripped it taking it out of the cookie, which--being oddly superstitious at times--I took as a pretty bad sign. Well, he asked for another fortune cookie today at lunch time, opened it up and handed it to me to read to him. And you know what? He got it again: You will live a long, prosperous life. No rip. It's hard not to buy into that....
Love,
Paul
Before I continue, I do have to say that I have received all of your notes, cards, messages, posts, etc. expressing your sympathy, support and love over the passing of my dad. I am grateful for all of them and sincerely thank you. It goes without saying that this is an incredibly difficult and bittersweet time for me--for us--and I appreciate you thinking of me. Like Cynthia, I have not been here to post for the last few weeks, because it was simply too hard to come here. Never would I have thought that a blog to write about my sick son would turn into a place to post my dad's (premature) obituary. I am posting tonight, because you deserve an update on Andrew and because we are at such a pivotal and optimistic time. I do feel like I will eventually post here about my dad, but it is all a bit too raw and unprocessed at the moment.
Cynthia already gave a rundown of the week and how Andrew has been handling everything: It has been pretty manageable, he has been in overall good spirits, and the bottom line is that we are now one day away from completing treatment. Well, at least hospital-bound treatment. As Cynthia mentioned, Andrew will have oral meds at home for at least another six months, but that seems strangely light and easy compared to what we have been through. We have been at this for over a year now and we are exhausted, yet looking ahead to what next week looks like and the week after that and the week after that, it's hard not to get excited at all the UNINTERRUPTED living we will actually be doing: We will all be sleeping under one roof together next week and the week after and the week after; Andrew will be able to string together whole weeks of school, followed by more whole weeks of school; we will be able to plan family outings and trips on the weekends; we will stop dragging out and delaying getting a family pet; Lucia will stop feeling left out and isolated by her brother's illness and care....
In other words, we are about to embark on life "post-cancer." Of course, as we are reminded constantly, Neuroblastoma is a nasty, angry, bitter cancer and it likes to come back--typically within two years. So, we are not naive. We are not ignorant. We will be living, but it will be impossible not to have one eye looking back over our shoulder, watching, waiting, wondering if there is a relapse in store for Andrew and for us. We are excited for life now and we are cautiously optimistic, but we respect this disease enough to carry a deep sense of dread as we tip-toe through the coming weeks, then months, then (touch wood) years.
I have to close with this: On Monday, Uncle Vince and Uncle Dave brought Andrew his favorite hospital dinner--Chinese noodles with soy sauce and lots and lots of fortune cookies. Andrew loves to eat fortune cookies and when he does, he asks me to read the fortunes to him. Of course, he never understands them and then always asks me to explain them. Well, he got one that needed no explanation: You will live a long, prosperous life. Not to pin too much hope on a fortune cookie, but the unfortunate thing was that he ripped it taking it out of the cookie, which--being oddly superstitious at times--I took as a pretty bad sign. Well, he asked for another fortune cookie today at lunch time, opened it up and handed it to me to read to him. And you know what? He got it again: You will live a long, prosperous life. No rip. It's hard not to buy into that....
Love,
Paul
Last Week In the Hospital
Sorry for the delay in posting...I tried to post many times but each time I came here I saw my father-in-law's obituary and I just couldn't write a new post. But I'm ready now.
So Andrew is in the hospital this week for his LAST treatment. That's right, his LAST treatment. He checked in on Sunday night and, of course, had to get a blood transfusion. Yes, he still needs them. We are not sure why. Most kids have recovered by now but he hasn't. Because the antibody treatment requires his hemoglobin to be at a certain level, we have to transfuse. Once the treatment is over, however, we are going to let his hemoglobin get very low and hope that his marrow will kick in and start producing more red blood cells. We are still hopeful that this isn't a permanent problem.
Treatment this week is going okay. He had some pain on Monday, had some swelling and vomitted once. Poor baby. Yesterday he had no pain (although was uncomfortable and fidgeted all day) and had swelling again, but was generally in a better mood. His favorite fellow patient, Kelsey, stopped by for a visit so he was all smiles. And he has been getting lots of Valentine's Day candy from the staff. So he was in a very good mood yesterday.
After this week, Andrew will get a full disease evaluation; CT scan, MIBG scan, bone scan, bone marrow biopsy, blood and urine work to see where we are. Assuming we get an all clear, Andrew will continue to receive his oral chemo (Accutane) two weeks every month for the next 6 months. He will also have scans done every three months. Pretty soon we will only have to see the doctor once a month! Much less than the twice a week schedule we are on now. And of course we still have the virus/vaccine therapy that we are going to do in Houston - his vaccine is not quite ready so our trip has been pushed back to sometime around June. Yes, our future looks a lot less busy!!
So Andrew is in the hospital this week for his LAST treatment. That's right, his LAST treatment. He checked in on Sunday night and, of course, had to get a blood transfusion. Yes, he still needs them. We are not sure why. Most kids have recovered by now but he hasn't. Because the antibody treatment requires his hemoglobin to be at a certain level, we have to transfuse. Once the treatment is over, however, we are going to let his hemoglobin get very low and hope that his marrow will kick in and start producing more red blood cells. We are still hopeful that this isn't a permanent problem.
Treatment this week is going okay. He had some pain on Monday, had some swelling and vomitted once. Poor baby. Yesterday he had no pain (although was uncomfortable and fidgeted all day) and had swelling again, but was generally in a better mood. His favorite fellow patient, Kelsey, stopped by for a visit so he was all smiles. And he has been getting lots of Valentine's Day candy from the staff. So he was in a very good mood yesterday.
After this week, Andrew will get a full disease evaluation; CT scan, MIBG scan, bone scan, bone marrow biopsy, blood and urine work to see where we are. Assuming we get an all clear, Andrew will continue to receive his oral chemo (Accutane) two weeks every month for the next 6 months. He will also have scans done every three months. Pretty soon we will only have to see the doctor once a month! Much less than the twice a week schedule we are on now. And of course we still have the virus/vaccine therapy that we are going to do in Houston - his vaccine is not quite ready so our trip has been pushed back to sometime around June. Yes, our future looks a lot less busy!!
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