Thursday, November 29, 2007
Liam Complaining of Leg Pain.....
The last two weeks have proven to be more of a challenge on the cookie front than we had bargained for and to add further stress things have not been as desired with our Prince. Liam completed his 5th round of 3f8's the week prior to Thanksgiving and then started Acutane the week of the holiday. He was very nauseous all of last week and was not able to keep much of anything down. We of course were concerned since he had not had any issue with Acutane during any of the past rounds and he did not seem to have any flu like symptoms. Anti-nausea medication had little impact and he chose not to eat for fear of throwing up. Liam lost 4 lbs. over the course of two weeks and this was troubling for us to say the least. This week his appetite suddenly returned and the nausea has all but disappeared even though he is still taking Acutane until the end of the week. Unfortunately the nausea has been replaced with something far more scary to any parent who has a child with neuroblastoma....leg pain and a slight limp. The fear this specific symptom strikes in you is all consuming. Liam would not climb the stairs today at school and his loving teacher had to carry him upstairs to the play area. We have been told some kids have severe bone pain while on Acutane so there is some potential reason for his pain other than the first thing that pops into a parent head who is in our situation. Liam just by chance had an appointment today at Memorial for a blood draw to see if he is still HAMMA negative so he can receive another round of 3f8 antibodies (6th round 7 weeks from now). His doctors have been alerted and will see him while he is there this afternoon. I am sharing this with you for the sole reason of sharing the fear of our unknown. Today is one many we will face not knowing if we are to be dragged back down into what can be described as nothing other than hell or if it is nothing to worry about and all due to Acutane. It is ironic this happens now while we are fighting harder than ever, along with the support of many of you, to find away to fight back against this terrible disease. I sit now waiting, worrying, trying to work but hanging on every phone call hoping it is Gretchen. I struggle to find the words to even post and though I have convinced myself it is nothing more than side affects due to Acutane, the fear is real and the feeling felt back in February when Liam was first diagnosed is again present. We of course will update when we know more. Liam is due for his 90 scans and bone marrow tests just prior to Christmas. I guess this is a reminder to continue to pray for him and to keep him in your thoughts. It is a reminder to Gretchen and I that though we have had a small taste of normalcy lately if you take out trying to sell 8,000 dozen cookies, we are always one limp or show of pain away from hell. We need a cure.
Tuesday, November 27, 2007
Cookies for Kids Cancer
The baking is ready to start in just a few days but we are nowhere near where we had hoped to be in terms of cookies sales. Maybe we were too optimistic as to how many the 80 plus parents and members of the Band of Parents foundation would be able to sell? Maybe it is just too much to expect parents of kids with cancer to find the time to sell cookies to raise money for a treatment that may make the difference in their childrens lives. Maybe it would be easier if such funding would be provided by our government like it is for adult cancers, but this is not our reality? If it was we the parents of kids with cancer could spend our extra time with our children instead of helping to develop better treatments. We need your support and the support of everyone you know to make this event a success. To raise the funds needed for the team of reseach scientists at Memoral Sloan-Kettering Cancer Center to begin to develop the humanized antibody and bring it quickly into trials. Hundreds of you visit Liams blog each day and today I ask that you help your Prince by buying some cookies and then asking 10 or more of your closest friends to do the same and so on. Thank you to those who have already ordered and shown your support for Gretchen and her selfless effort to make this event a reality in a matter of weeks for our son and the other children fighting with him.
Monday, November 26, 2007
Thanksgiving for us...
It was nice to be able to spend a few days at our home in New Jersey and to catch our breathe after the hectic weeks leading up to the holiday. Liam just finished his 5th round of 3f8 antibodies and Gretchen and I had been burning the candle at both ends readying the cookie event for the Band of Parents. Thanksgiving is the day when everyone is supposed to reflect on all of the things they are thankful for in their lives. Just as we sat down to dinner it became immediately apparent just how hard this very moment, of this very holiday, was going to be for Gretchen and I. The time when someone would normally say a prayer and thank god for each other, all we have, our health, and for friends and family. Today we just looked into each others eyes and no words needed to be spoken, no words could be spoken. I just looked at her and said...I know...I know...as tears began to stream down each of our cheeks. In an instant anything that needed to be said was said. We are thankful beyond words for how Liam has progressed since diagnosed in February. We are forever thankful for all of you who have cheered Liam on and been there for us for nearly a year now. We are thankful for the dedicated team of doctors and researchers who fight this beast each and everyday. We are thankful for Ella who brings us endless joy and if not for her adoring love this past year, it surely would have been much darker for Liam, Gretchen, and I. We are thankful to have each other to lean on during what is undoubtably one of the toughest tests of physical and mental strength a parent or couple can be forced to endure. We know our lives will never be the same and we will never be able to fully return to the way it was. We are not the same people. We will live with a constant fear of losing our son; of wondering will it come back? We have watched as other parents have lost a child, as lovely children with full heads of new hair, just settling back into the proper world of a being a kid, only to relapse and be brutally yanked back to the world of pain, medicines, hospitals, confusion, and fear. We are thankful for sure but I would not be honest if I did not tell you that we won't be satisfied nor will we rest until we are certain our son is safe and has beaten this unwelcome cancer. We will fight until all children fighting neuroblastoma have a better chance of winning than they do today. You can help. By clicking the following link now http://www.cookiesforkidscancer.org and buying our cookies as gifts this holiday season. We begin baking with an army of 200 volunteers this Saturday and we need your orders. All of you who have followed and been a part of this painful journey can help Liam right now by supporting our efforts to further the development of the next generation antibody treatment. Liam will reject the current mouse based antibody at some point in the future. Without a new humanized version, the treatment options available if he were to relapse as more than half do, are virtually non-existent. Your cookie purchase will directly impact the development of a new treatment at Memorial Sloan-Kettering Cancer Center and it could directly benefit your Brave Prince Liam if he were ever to need it. It is one thing to live with fear and yet another to give into it. Help us fight for Liam and his neuroblastoma brothers and sisters. http://www.cookiesforkidscancer.org/
Monday, November 12, 2007
In Honor of Our Son Liam Witt
Dear Friends and Family,
As most all of you know we have been faced with the challenge of our lives this year as we fight to rid our son Liam of the cancer that has invaded his innocent little body. The reality of his type of cancer, neuroblastoma, leaves us with no guarantee as to his long term prognosis. The grim reality is that more than 50% of the children diagnosed with neuroblastoma relapse, and the survival rate for children diagnosed with high risk disease like Liam is in the neighborhood of 30%.
We, along with other parents facing this reality, find it unacceptable and have decided to act and do all we can to make a difference to improve these terrible odds. As a result the “Band of Parents Foundation” was created and our objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. As a founding board member and VP of Marketing for the Band, I am encouraged by the research and future potential of treatments currently under development at MSKCC. Gretchen and I feel we must do everything in our power to give Liam the best chance possible and if he were to relapse we want to be sure there are treatment options available that today don’t existent. I have watched as other board members have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Gretchen and I have put together an ambitious plan to raise more than $200,000 for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies for Kids’ Cancer.”
We, along with a volunteer army, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author and dear friend, Sally Sampson’s recently released cookbook, Cookies. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.
I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.
The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: http://www.cookiesforkidscancer.org/
You might also want to visit the “Band of Parents” website http://www.bandofparents.org/ to learn more about the foundation we are so passionately involved.
We hope you will pass the email to anyone and everyone you know to help us ensure Liam and all the other children fighting neuroblastoma receive the future treatment options they so desperately need.
Bound by Hope,
Larry & Gretchen Witt
As most all of you know we have been faced with the challenge of our lives this year as we fight to rid our son Liam of the cancer that has invaded his innocent little body. The reality of his type of cancer, neuroblastoma, leaves us with no guarantee as to his long term prognosis. The grim reality is that more than 50% of the children diagnosed with neuroblastoma relapse, and the survival rate for children diagnosed with high risk disease like Liam is in the neighborhood of 30%.
We, along with other parents facing this reality, find it unacceptable and have decided to act and do all we can to make a difference to improve these terrible odds. As a result the “Band of Parents Foundation” was created and our objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. As a founding board member and VP of Marketing for the Band, I am encouraged by the research and future potential of treatments currently under development at MSKCC. Gretchen and I feel we must do everything in our power to give Liam the best chance possible and if he were to relapse we want to be sure there are treatment options available that today don’t existent. I have watched as other board members have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Gretchen and I have put together an ambitious plan to raise more than $200,000 for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies for Kids’ Cancer.”
We, along with a volunteer army, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author and dear friend, Sally Sampson’s recently released cookbook, Cookies. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.
I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.
The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: http://www.cookiesforkidscancer.org/
You might also want to visit the “Band of Parents” website http://www.bandofparents.org/ to learn more about the foundation we are so passionately involved.
We hope you will pass the email to anyone and everyone you know to help us ensure Liam and all the other children fighting neuroblastoma receive the future treatment options they so desperately need.
Bound by Hope,
Larry & Gretchen Witt
Friday, October 19, 2007
Living life 90 days at a time.
Friday, September 21st closed one book on our journey and began a new one. It was the last day of Liam's fourth cycle of mouse antibodies. (The first four cycles, each cycle is five days, were three weeks apart.) With the end of the fourth cycle, we now move to every eight weeks apart. It also was the day of Liam's second full battery of tests to search his little body for any cancer cells that have escaped chemo, surgery, radiation, three rounds of antibodies and retinoid (Accutane) therapy. Liam will undergo, or should I say endure, this battery of tests every 90 days for the next two years to make sure he is "clean." I have a new way of thinking about this period of testing. Instead of thinking about it as two whole years…which sounds very long to me…I think about it as rounds of tests. We have eight or nine of these tests to go through. We've done two and now have six or seven to go. Superstition won't allow me to mark the dates on a calendar…but my internal calendar is extremely aware of the dates. I try not to think about them, but it's impossible not to. And now I realized we're living life in three-month vignettes. And while yes, I know….life has absolutely no guarantees…it's different when you know you have these dates hanging out there reminding you to live and love.
We left town on Saturday, September 22nd for a two-week "regroup as a family" break to the house we've vacationed the last few years. We always go this time of year when the weather isn't blazing hot and there's relatively little traffic so that part felt normal. What didn't feel good was replaying memories of our trip last year when we were still innocent. I also kept trying to find signs of cancer in my memory's eye when I replayed scenes from last year. Was there something I missed that would have told me his body was being invaded? Was it the day he took an early nap? Was that my clue? Was it the day he didn't seem excited about being at the beach? When was it? When? Why didn't I know? I feel like there was something, some little thing other than being a picky eater I should have noticed. And then I remind myself there's a reason this type of cancer is called the silent killer.
We've been talking to Liam and Ella about going to "the beach house" for months. Liam would spin the globe that we brought from his bedroom in NJ to his new one in his "city home" searching for "his" beach house. He would find it (usually he would point to Fiji – which is far away from the actual location in Massachusetts but not a bad place to have a beach house) and talk about all the things he was going to do from building sand castles to fishing with daddy. We made these plans months ago…I think back in May…when the family we rent a house from contacted us when they heard about Liam. We didn't realize when we made the plans just how naïve we were to think we could schedule something months in advance. But now, knowing how many friends are having delays in treatments from complications, we were bloody idiots for thinking we could plan as far in advance as we did. It reminds me of the saying that birds can fly because they think they can. We just always thought we'd be at the beach house when we planned since that's what Liam's medical team projected. A delay never crossed our minds. I suppose ignorance truly is bliss. And except for having to take Accutane twice a day and antibiotics three days/week to prevent a nasty strain of pneumonia that plagues those like Liam who are immuno suppressed, our Prince didn't have any other medical terminology to have to deal with during our stay at the beach house.
Liam and Ella had a wonderful time and seeing how much both children have grown and developed since the last time we were at the beach was amazing. Instead of Ella being a baby, she served as a trusty play companion for Liam. They played, and played and Ella basically did anything Liam instructed her to do. It was heart-warming and heart-breaking to see how much Ella truly idolizes and adores her brother. I would catch her watching him and then repeating everything he did. When she would wake from a nap and didn't see him, she would call out, "Wee-UM! Wee-UM where are you?!" WEE-UM!" They slept in the same room, fought over the same toys, and competed for the "who's going to use the potty first" award which was a hearty round of applause. There are many times Larry and I feel like we have twins seeing how similar in ability the dynamic duo has become. And, true to our journey, for some strange reason that is hard to believe it's only a coincidence…on the morning after our arrival Liam was in his routine of watching Curious George on TV. The Curious George episode airing was an old one…the one where George was at his beach house building sanding castles. It was the episode Liam has seen over and over and asked us question after question about to make sure his beach experience would be exactly like his idol "George the monkey." OK – I know there's a logical explanation as to why that particular episode of Curious George was airing, but of all the episodes that could be airing it was the beach one. Hmm. I think I'll ponder that one.
As the time away from Memorial Sloan-Kettering stretched from hours to days, I found there actually were times I didn't think about "it." Those times were fleeting, but they did exist. And there were other times I looked at my adorable children so full of life, love and energy while the words "CANCER, CANCER, CANCER" screamed in my head. Those are the times I loathe with a passion. I don't want cancer to be a part of our lives any more, thank you very much. I'm done with it. I will never, ever take anything for granted again. I will cherish each moment life has to offer. So, please, cancer, go away. Just please go away.
Most nights of vacation found either one or both of our children in our bed having awakened at some point during the night crying out for mommy or daddy. This is a huge change from life before cancer. Before cancer we were the family who proudly talked about how our children never slept with us. Now we find ourselves with either Liam or Ella soundly sleeping next to us or on top of one of us. It wouldn't be so much of an issue if Ella was a sound sleeper, but instead she's like a breaching whale flopping from side-to-side a dozen times during the night. Many times we'd hear Liam saying, "Ella – Go back to sleep!" The other thing that has changed is how much Liam loves to feel mommy or daddy next to him. Requesting "Twinkle Twinkle Little Star" be sung and feet rubbed are two things Liam asks for every night, something that certainly didn't happen before cancer when he would sometimes put himself to bed with a simple, "I'm going night night" to us.
The big project for Larry during vacation was building a website, the first time he's ever tackled this task, for the Band of Parents group we are a part of. This is the group of 60 families feverishly working to raise money to fund manufacturing of a humanized version of the antibody treatment all our children receive. The belief is that a humanized version would be better because it would be better received and, therefore, more effective. The current antibody, developed by Dr. Cheung at Sloan-Kettering, has been in use for 21 years but is still a phase II clinical trial. As a clinical trial, the hospital can't charge for the treatment and the majority of funds raised to make the current iteration come from Fred's Team, named for the New York City Marathon founder Fred Lebow. In a perfect world, the humanized version would be available for every child battling neuroblastoma, not just those at Sloan-Kettering. It, at least, is our hope that every child can benefit from it.
Teaching yourself how to build a website from scratch with the urgency of knowing several children are in need of a humanized version of 3F8 as soon as it's available carries a certain burden. It was a stressful and time-consuming process, but a necessary one. Two of the Band of Parent members are currently dealing with relapse situations…one of whom Larry is particularly close with whose son is just shy of his fourth birthday. It is for these families that Larry spent hours and hours and even more hours putting together a website. The website is up…it's simple but hopefully effectively communicates the message. The address is http://www.bandofparents.org/.
We very slowly but surely "re-jelled" as a family. Ella got used to seeing both Liam and Mommy around and not off for days at a time. Liam got used to be away from the hospital and didn't once ask, "is tomorrow a hospital day?" And Larry and I got used to seeing each other without one of us wrapped up in caring for Liam.So now we're a few weeks into our second 90-day life. Our first one was from June – September. This one goes until December when Liam's next round of testing commences. We also found out that Liam is cleared to receive a fifth round of antibodies which is scheduled the week before Thanksgiving. A few weeks after each round of antibody treatment, a vial of Liam's blood is drawn from his arm. He now points out which vein he wants to use. The blood goes through an eight-hour test to make sure there are no signs of an antibody to the antibody. The testing always takes place on a Tuesday and it's a nerve-wracking day for us. If we don't receive a phone call by 6:30 p.m., we know Liam is cleared to receive another round of antibody. On the day of the testing, I carry my phone with me and pray it won't ring. And if it doesn't, I still call the hospital on Wednesday to ask if they tried to call me or if I really didn't hear my phone ring. It didn't ring on Tuesday and after I called the hospital on Wednesday morning, confirmed that it really didn't ring. We hope the phone doesn't ring for a long time.
Closing Note: In the time it took to write this post, the little boy just shy of his fourth birthday lost his battle to neuroblastoma and another little boy has relapsed. We need to change this. We can change this. And we have to do it...now.
We left town on Saturday, September 22nd for a two-week "regroup as a family" break to the house we've vacationed the last few years. We always go this time of year when the weather isn't blazing hot and there's relatively little traffic so that part felt normal. What didn't feel good was replaying memories of our trip last year when we were still innocent. I also kept trying to find signs of cancer in my memory's eye when I replayed scenes from last year. Was there something I missed that would have told me his body was being invaded? Was it the day he took an early nap? Was that my clue? Was it the day he didn't seem excited about being at the beach? When was it? When? Why didn't I know? I feel like there was something, some little thing other than being a picky eater I should have noticed. And then I remind myself there's a reason this type of cancer is called the silent killer.
We've been talking to Liam and Ella about going to "the beach house" for months. Liam would spin the globe that we brought from his bedroom in NJ to his new one in his "city home" searching for "his" beach house. He would find it (usually he would point to Fiji – which is far away from the actual location in Massachusetts but not a bad place to have a beach house) and talk about all the things he was going to do from building sand castles to fishing with daddy. We made these plans months ago…I think back in May…when the family we rent a house from contacted us when they heard about Liam. We didn't realize when we made the plans just how naïve we were to think we could schedule something months in advance. But now, knowing how many friends are having delays in treatments from complications, we were bloody idiots for thinking we could plan as far in advance as we did. It reminds me of the saying that birds can fly because they think they can. We just always thought we'd be at the beach house when we planned since that's what Liam's medical team projected. A delay never crossed our minds. I suppose ignorance truly is bliss. And except for having to take Accutane twice a day and antibiotics three days/week to prevent a nasty strain of pneumonia that plagues those like Liam who are immuno suppressed, our Prince didn't have any other medical terminology to have to deal with during our stay at the beach house.
Liam and Ella had a wonderful time and seeing how much both children have grown and developed since the last time we were at the beach was amazing. Instead of Ella being a baby, she served as a trusty play companion for Liam. They played, and played and Ella basically did anything Liam instructed her to do. It was heart-warming and heart-breaking to see how much Ella truly idolizes and adores her brother. I would catch her watching him and then repeating everything he did. When she would wake from a nap and didn't see him, she would call out, "Wee-UM! Wee-UM where are you?!" WEE-UM!" They slept in the same room, fought over the same toys, and competed for the "who's going to use the potty first" award which was a hearty round of applause. There are many times Larry and I feel like we have twins seeing how similar in ability the dynamic duo has become. And, true to our journey, for some strange reason that is hard to believe it's only a coincidence…on the morning after our arrival Liam was in his routine of watching Curious George on TV. The Curious George episode airing was an old one…the one where George was at his beach house building sanding castles. It was the episode Liam has seen over and over and asked us question after question about to make sure his beach experience would be exactly like his idol "George the monkey." OK – I know there's a logical explanation as to why that particular episode of Curious George was airing, but of all the episodes that could be airing it was the beach one. Hmm. I think I'll ponder that one.
As the time away from Memorial Sloan-Kettering stretched from hours to days, I found there actually were times I didn't think about "it." Those times were fleeting, but they did exist. And there were other times I looked at my adorable children so full of life, love and energy while the words "CANCER, CANCER, CANCER" screamed in my head. Those are the times I loathe with a passion. I don't want cancer to be a part of our lives any more, thank you very much. I'm done with it. I will never, ever take anything for granted again. I will cherish each moment life has to offer. So, please, cancer, go away. Just please go away.
Most nights of vacation found either one or both of our children in our bed having awakened at some point during the night crying out for mommy or daddy. This is a huge change from life before cancer. Before cancer we were the family who proudly talked about how our children never slept with us. Now we find ourselves with either Liam or Ella soundly sleeping next to us or on top of one of us. It wouldn't be so much of an issue if Ella was a sound sleeper, but instead she's like a breaching whale flopping from side-to-side a dozen times during the night. Many times we'd hear Liam saying, "Ella – Go back to sleep!" The other thing that has changed is how much Liam loves to feel mommy or daddy next to him. Requesting "Twinkle Twinkle Little Star" be sung and feet rubbed are two things Liam asks for every night, something that certainly didn't happen before cancer when he would sometimes put himself to bed with a simple, "I'm going night night" to us.
The big project for Larry during vacation was building a website, the first time he's ever tackled this task, for the Band of Parents group we are a part of. This is the group of 60 families feverishly working to raise money to fund manufacturing of a humanized version of the antibody treatment all our children receive. The belief is that a humanized version would be better because it would be better received and, therefore, more effective. The current antibody, developed by Dr. Cheung at Sloan-Kettering, has been in use for 21 years but is still a phase II clinical trial. As a clinical trial, the hospital can't charge for the treatment and the majority of funds raised to make the current iteration come from Fred's Team, named for the New York City Marathon founder Fred Lebow. In a perfect world, the humanized version would be available for every child battling neuroblastoma, not just those at Sloan-Kettering. It, at least, is our hope that every child can benefit from it.
Teaching yourself how to build a website from scratch with the urgency of knowing several children are in need of a humanized version of 3F8 as soon as it's available carries a certain burden. It was a stressful and time-consuming process, but a necessary one. Two of the Band of Parent members are currently dealing with relapse situations…one of whom Larry is particularly close with whose son is just shy of his fourth birthday. It is for these families that Larry spent hours and hours and even more hours putting together a website. The website is up…it's simple but hopefully effectively communicates the message. The address is http://www.bandofparents.org/.
We very slowly but surely "re-jelled" as a family. Ella got used to seeing both Liam and Mommy around and not off for days at a time. Liam got used to be away from the hospital and didn't once ask, "is tomorrow a hospital day?" And Larry and I got used to seeing each other without one of us wrapped up in caring for Liam.So now we're a few weeks into our second 90-day life. Our first one was from June – September. This one goes until December when Liam's next round of testing commences. We also found out that Liam is cleared to receive a fifth round of antibodies which is scheduled the week before Thanksgiving. A few weeks after each round of antibody treatment, a vial of Liam's blood is drawn from his arm. He now points out which vein he wants to use. The blood goes through an eight-hour test to make sure there are no signs of an antibody to the antibody. The testing always takes place on a Tuesday and it's a nerve-wracking day for us. If we don't receive a phone call by 6:30 p.m., we know Liam is cleared to receive another round of antibody. On the day of the testing, I carry my phone with me and pray it won't ring. And if it doesn't, I still call the hospital on Wednesday to ask if they tried to call me or if I really didn't hear my phone ring. It didn't ring on Tuesday and after I called the hospital on Wednesday morning, confirmed that it really didn't ring. We hope the phone doesn't ring for a long time.
Closing Note: In the time it took to write this post, the little boy just shy of his fourth birthday lost his battle to neuroblastoma and another little boy has relapsed. We need to change this. We can change this. And we have to do it...now.
Monday, October 15, 2007
Liam the Pill Popper
NOTE: I’m backtracking a little. This is a post that has been in progress for a while. I wasn’t going to post it, but then heard about a few children who have had trouble taking pills and I thought it might be helpful to see how we approached the challenge.
It’s always strange going back to the hospital when I haven’t been there for a while. Between August 24th and September 11th, we’ve only been (I think) twice. But I might be wrong…I’m so used to being at the hospital that sometimes I forget about a quick trip to pick up syringes or a Tiffany-sized box of medicine that costs a few thousand dollars. When I pass through the entrance which typically is flanked with smokers (including some patients in hospital gowns and IV poles) puffing away, I can feel myself going into “hospital mode.” Hospital mode is a mixture of steely reserve, endless patience for Liam’s never-ending “why” questions, a slick coating of “I can handle this” to try and let any surprise thrown at me slide down between my shoulder blades without bothering me (at least as far as Liam can see), and a certain amount of trepidation of what I might find. My fear isn’t necessarily related to Liam, I worry about the other brave children we have met along the way. I never want to see or hear that someone has had a setback, but unfortunately that’s quite often the reality.
During my writing hiatus while I was wrestling with the relapse and hospice gremlins, I didn’t mention how Liam learned how to take pills. What I thought was going to be an agonizing experience in frustration was an unbelievably easy lesson.
The thought of having to teach Liam how to swallow the three, fairly large Accutane pills he has to take twice a day for two weeks with a two week break has weighed heavily on my mind since I found out that it was part of the protocol he would be following. I thought about it a lot and kept wondering how I was going to teach my barely three-year old little boy the concept of swallowing a pill without biting it and tasting the nasty contents or throwing up after trying to choke it down. He already was having an extremely difficult time not vomiting when taking medicines that taste “yucky.” How in the world was this new challenge going to be conquered? I’ve known how important Accutane is at attacking immature cancer cells, so the pressure to get Liam on the pill-popping band wagon was extremely important. And the other option out there – drawing out the liquid with a syringe, transferring the contents to another container, and then getting Liam to drink it - wasn’t ideal. As one of the nurse practioners told me, you never get the same amount of medicine and I want every drop of Accutane in him.
About two months before the Accutane therapy was set to commence, I started having Liam be a part of my daily pill-taking regiment. I would hand him the two pills I take every day, allow him to place each pill on my tongue, and take a very long drink, open up my mouth and let him see that it was gone. If he didn’t place the pill in the right place on my tongue, I would have him redo it. If he tried to put it on the tip of my tongue, I would explain why that wouldn’t work. When he would ask me why I drank so much after swallowing a pill, I’d explain how it made the pill go straight down into my belly. Every day, Liam would remind me it was time to take my pills. He rather enjoyed the concept of mommy having to do something medical related. But helping mom is still a long way from him having to take a pill. The prescription calls for two pills in the morning and one in the evening. The pills are egg-shaped and not too big, but definitely not the smallest pill I’ve seen. Accutane comes with all kinds of warnings and its own set of future worries. It also can cause what has been described as “horrid” side effects ranging from skin sloughing off like a lizard and causing painful bleeding blisters, to mood swings so dramatic they leave parents wondering what happened to their child. The drug is closely monitored by the government and parents have to sign a multi-page contract that left me with the feeling that I was at a house closing, not treating my son’s cancer.
On the morning he was scheduled to begin taking Accutane, he had a bone marrow test which is done under anesthesia. Great. In addition to having to teach him how to take a pill, it was going to have to be done while he was anesthesia “drunk.” Off to Sloan-Kettering we went in the morning for the bone marrow extraction from four sites in his pelvis. And then back to the apartment. I kept looking at my watch to see morning slipping away while Liam slept off the effects of anesthesia. Finally, I decided to wake him up which can always be a risky act when he’s in a drug-induced slumber. I apprehensively woke him up. He didn’t immediately start crying. (OK – Good sign.) And then I said, “Honey – I need to talk with you about something,” which is the way I broach any new topic that needs a little more explanation. “Sure Mommy, what do you want to talk about?” It’s our little routine. He knows that if I tell him we have to talk, that it’s something that requires his full 3-year old attention. I explained in my most optimistic-sounding voice that today was a very big day for him. Today was the day he too would have some pills to take. He asked what the pills were. I told him vitamin A. (Not a lie – they really are high doses of vitamin A. He asked why he had to take them. I told him that vitamins helped make little boys and girls grow up to be big and strong. (Not a lie – Accutane will help him grow up to be big and strong.) And then I explained how this was no big deal since he already knew how to take pills because he had been helping mommy. He looked very earnest, stayed quiet and furrowed his brow. He examined the pills and wanted to know why they were squishy as he tried to pop one. OK – Another good learning opportunity. I reminded him how some medicines taste really icky and sometimes make him throw up. When medicine is in a pill, you don’t have to taste it which is a really good thing. He quietly sat considering what I was saying and then recounted how “one time we had to go to the hospital” to take some medicine because he threw up after taking it (the whole iodine experience). When he goes into his recounting of a memory seared in his mind, he talks about every detail. It always amazes and frightens me how much he remembers. He remembered the team of doctors and nurses kneeling in front of his stroller encouraging him to take the iodine drops. He recalled how the nurse with the long hair mixed the icky tasting medicine with cherry syrup to make it taste better. He remembered that everyone clapped for him. He remembered that he was wearing his jammies. He remembered that it was very late at night. He remembered that it still didn’t taste good but that he took it all. And then he cautiously took one of the pills, placed it on his tongue, took a giant sip of milk, and gagged a little bit while it was going down. I cheered. He fretted about gagging and worried he was going to throw up. I told him to drink, drink, drink, drink, drink to make sure it goes down. He took the second pill; put it in his mouth, drank and drank and drank and drank until he couldn’t drink any more; handed me the cup and said, “Done!” And that’s how Liam learned how to take pills. Now, he even takes both pills at the same time. A week later I introduced a new pill to the mix, Bactrim. It’s one we had to stop taking the liquid form of because he would throw up. For months he has been receiving it via IV every two weeks. It’s not an easy pill to take because it’s a tablet that tastes yucky once it touches your tongue. But, he’s figured out how to do it and with that…the hospital leash loosens just a little bit more. When he asked why he had to take this one, the explanation was a little different, “Because Dr. Kushner loves you and wants to see you grow up to be a big boy.” His response was, “Oh, OK.”
And once again, we find ourselves incredibly fortunate that Liam has had no side effects other than a little bit of dry skin on his nose while taking Accutane. We are so, so, so grateful and take nothing for granted. Nothing.
It’s always strange going back to the hospital when I haven’t been there for a while. Between August 24th and September 11th, we’ve only been (I think) twice. But I might be wrong…I’m so used to being at the hospital that sometimes I forget about a quick trip to pick up syringes or a Tiffany-sized box of medicine that costs a few thousand dollars. When I pass through the entrance which typically is flanked with smokers (including some patients in hospital gowns and IV poles) puffing away, I can feel myself going into “hospital mode.” Hospital mode is a mixture of steely reserve, endless patience for Liam’s never-ending “why” questions, a slick coating of “I can handle this” to try and let any surprise thrown at me slide down between my shoulder blades without bothering me (at least as far as Liam can see), and a certain amount of trepidation of what I might find. My fear isn’t necessarily related to Liam, I worry about the other brave children we have met along the way. I never want to see or hear that someone has had a setback, but unfortunately that’s quite often the reality.
During my writing hiatus while I was wrestling with the relapse and hospice gremlins, I didn’t mention how Liam learned how to take pills. What I thought was going to be an agonizing experience in frustration was an unbelievably easy lesson.
The thought of having to teach Liam how to swallow the three, fairly large Accutane pills he has to take twice a day for two weeks with a two week break has weighed heavily on my mind since I found out that it was part of the protocol he would be following. I thought about it a lot and kept wondering how I was going to teach my barely three-year old little boy the concept of swallowing a pill without biting it and tasting the nasty contents or throwing up after trying to choke it down. He already was having an extremely difficult time not vomiting when taking medicines that taste “yucky.” How in the world was this new challenge going to be conquered? I’ve known how important Accutane is at attacking immature cancer cells, so the pressure to get Liam on the pill-popping band wagon was extremely important. And the other option out there – drawing out the liquid with a syringe, transferring the contents to another container, and then getting Liam to drink it - wasn’t ideal. As one of the nurse practioners told me, you never get the same amount of medicine and I want every drop of Accutane in him.
About two months before the Accutane therapy was set to commence, I started having Liam be a part of my daily pill-taking regiment. I would hand him the two pills I take every day, allow him to place each pill on my tongue, and take a very long drink, open up my mouth and let him see that it was gone. If he didn’t place the pill in the right place on my tongue, I would have him redo it. If he tried to put it on the tip of my tongue, I would explain why that wouldn’t work. When he would ask me why I drank so much after swallowing a pill, I’d explain how it made the pill go straight down into my belly. Every day, Liam would remind me it was time to take my pills. He rather enjoyed the concept of mommy having to do something medical related. But helping mom is still a long way from him having to take a pill. The prescription calls for two pills in the morning and one in the evening. The pills are egg-shaped and not too big, but definitely not the smallest pill I’ve seen. Accutane comes with all kinds of warnings and its own set of future worries. It also can cause what has been described as “horrid” side effects ranging from skin sloughing off like a lizard and causing painful bleeding blisters, to mood swings so dramatic they leave parents wondering what happened to their child. The drug is closely monitored by the government and parents have to sign a multi-page contract that left me with the feeling that I was at a house closing, not treating my son’s cancer.
On the morning he was scheduled to begin taking Accutane, he had a bone marrow test which is done under anesthesia. Great. In addition to having to teach him how to take a pill, it was going to have to be done while he was anesthesia “drunk.” Off to Sloan-Kettering we went in the morning for the bone marrow extraction from four sites in his pelvis. And then back to the apartment. I kept looking at my watch to see morning slipping away while Liam slept off the effects of anesthesia. Finally, I decided to wake him up which can always be a risky act when he’s in a drug-induced slumber. I apprehensively woke him up. He didn’t immediately start crying. (OK – Good sign.) And then I said, “Honey – I need to talk with you about something,” which is the way I broach any new topic that needs a little more explanation. “Sure Mommy, what do you want to talk about?” It’s our little routine. He knows that if I tell him we have to talk, that it’s something that requires his full 3-year old attention. I explained in my most optimistic-sounding voice that today was a very big day for him. Today was the day he too would have some pills to take. He asked what the pills were. I told him vitamin A. (Not a lie – they really are high doses of vitamin A. He asked why he had to take them. I told him that vitamins helped make little boys and girls grow up to be big and strong. (Not a lie – Accutane will help him grow up to be big and strong.) And then I explained how this was no big deal since he already knew how to take pills because he had been helping mommy. He looked very earnest, stayed quiet and furrowed his brow. He examined the pills and wanted to know why they were squishy as he tried to pop one. OK – Another good learning opportunity. I reminded him how some medicines taste really icky and sometimes make him throw up. When medicine is in a pill, you don’t have to taste it which is a really good thing. He quietly sat considering what I was saying and then recounted how “one time we had to go to the hospital” to take some medicine because he threw up after taking it (the whole iodine experience). When he goes into his recounting of a memory seared in his mind, he talks about every detail. It always amazes and frightens me how much he remembers. He remembered the team of doctors and nurses kneeling in front of his stroller encouraging him to take the iodine drops. He recalled how the nurse with the long hair mixed the icky tasting medicine with cherry syrup to make it taste better. He remembered that everyone clapped for him. He remembered that he was wearing his jammies. He remembered that it was very late at night. He remembered that it still didn’t taste good but that he took it all. And then he cautiously took one of the pills, placed it on his tongue, took a giant sip of milk, and gagged a little bit while it was going down. I cheered. He fretted about gagging and worried he was going to throw up. I told him to drink, drink, drink, drink, drink to make sure it goes down. He took the second pill; put it in his mouth, drank and drank and drank and drank until he couldn’t drink any more; handed me the cup and said, “Done!” And that’s how Liam learned how to take pills. Now, he even takes both pills at the same time. A week later I introduced a new pill to the mix, Bactrim. It’s one we had to stop taking the liquid form of because he would throw up. For months he has been receiving it via IV every two weeks. It’s not an easy pill to take because it’s a tablet that tastes yucky once it touches your tongue. But, he’s figured out how to do it and with that…the hospital leash loosens just a little bit more. When he asked why he had to take this one, the explanation was a little different, “Because Dr. Kushner loves you and wants to see you grow up to be a big boy.” His response was, “Oh, OK.”
And once again, we find ourselves incredibly fortunate that Liam has had no side effects other than a little bit of dry skin on his nose while taking Accutane. We are so, so, so grateful and take nothing for granted. Nothing.
Monday, October 1, 2007
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