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091


Last Chemo Coming Up!
Tuesday, June 5, 2001 -- 5:57pm
Posted by Bar


Hi everybody,It's finally sunny today. The last couple of weeks have been non-stop raining here and we're tired of it. The sun feels nice.After Forrest's weekly bloodwork was drawn yesterday, his doctor thought he would feel better now, and be stronger for chemo on Friday, if he got a blood transfusion this morning. His hemaglobin was low and someone else's blood has now rejuvenated him. WHOA! The kid's got TONS of energy this afternoon. Now I understand why mothers and fathers of 2 and 3-year-olds are always so tired. He's wearin' me out. Thankfully, Hannah is doing the running at this moment. She's here this afternoon to give Peter and me a chance to get some parts of our lives back together. Speaking of Hannah, she has decided - we have collectively decided - that having her here regularly would be excellent for all of us. She started last week by coming every morning for three hours. What a change for me! I have actually had time to open my mail, start my book, play the piano, make some long-procrastinated-on phone calls, and generally take a deep breath. Forrest is thrilled to. They have such a great time together. She has a wonderful gift. She can create all kinds of magic around kids and does so every time she comes here to play with Forrest. And Peter? WOW! He decided to build a shed on Tuesday, and by last night, the roof was on and he'd nearly killed himself by darn-near falling off that roof as the sun was setting around 9:00. He's amazing. AND he's stiff. It's a beautiful shed and he seems really pleased, REALLY pleased, to actually be getting something done. Not going to work much this last year has been hard on him emotionally, I think. Lots of things to tell you..... First, Forrest may have chicken pox! What a great thing! So normal. So regular. So EASY!! We'll know for sure one of these days. He just has a few suspect bumps on his head....We go for our last chemo on Friday through Monday, and I'm a wreck and excited about it at the same time. Just think, this time next week, we will be done with chemotherapy. I'm psyched!!Here's hoping and praying that no side effects decide to crop up now. I've been re-reading all of the e-mails I have written to you this last year in an attempt to put this book together. It's an emotional journey I assure you. So much to re-live and to feel again. I'm not sure I'm totally ready to do that re-living yet, but I'm going ahead with it. Trying not to be too self-critical. Also trying to just read and see what comes from just reading and not judging. It's weird to be reading back over things at the same time that I am thinking about what I want to write today. I got a letter from a friend of mine a couple of weeks ago, and a similar message from another parent whose child has hepatoblastoma in the preceding week, asking my advice on things. My friend and her husband had just learned that their son had a rare and difficult disease, and she felt like she might lose her mind trying to find a way to cope. Did I have any advice? It took me several days to respond to both of these people. I don't feel like I know at all what to say to anybody about how to deal with their child's health. But Forrest did something the other day that taught me something which is worth sharing. Basically, his message was: "Listen to me, and I will tell you what I need".: He and I were sitting on the bed playing with the 12 or so bottles of essential oil that we have on the bedside table. They are very small and colorful bottles and Forrest was arranging them by height and by the colors he liked to see next to one another. I remembered that I had another 6 or so different bottles in the kitchen, so I ran and got them and added them to our collection. As he was sorting them out, he would ask "what's this one? what's this one?" and with each bottle I would read the name not knowing one from the other in terms of their benefit to the person using them. When we got to the yellow one, he asked again, "what's this one?", and I said, "that's Lemon". Then he responded, "Get the book. What's it for?" Up until that moment, he had showed no interest in the function of any of the oils we were playing with, but for Lemon, he was adamant that I get the book and look it up. ('The book' is the reference text that describes the therapeutic uses of each of the oils available from the company I buy my oils from). So, I went to get the book, and sure enough, one of lemon's uses in aromatherapy is to re-build white blood cells! And that was precisely what Forrest was needing the most when he insisted on finding out what Lemon was good for! Now, I don't know how you feel about aromatherapy, the point is, Forrest's intuition was strong and he wanted me to listen. It's pretty powerful, I think, and valuable to recognize that our children DO know what they need. I feel really strongly that if we can hear them and take the time to respond and figure out their language, that we can help them in ways we have never imagined. That story gives me the chills even now when I tell you. It was just unbelievable to me that he communicated with me in that way. Needless to say, we used the Lemon oil right away and it was wonderful. What a great smell. The other thing Forrest reminded me of the other night is that he will inevitably repeat everything that I say in one form or another. We were changing his diaper and for some reason he wanted to do it on the very edge of the bed. (We don't have a changing table. Never believed in all of the furniture we are told we need when having a baby.) Anyway, he likes to sort of roll off the bed onto the floor when the new diaper is on. That same night, as we were getting ready to go to bed, he went out to the very farthest corner of the bed and announced, "I'm living on the edge!" WOW! Ain't that the truth! At least he wasn't repeating some awful gossip I'd let slip in a weak moment! Guess I better start being more careful, huh? Tonight our dog, Boo, comes home from being cared for by our friend, Helga, for the last 10 months. Tomorrow, Hannah will be here in the morning to play, and my parents will stop in on their way to Vermont to say hello. Thursday, Forrest will get to school for the first time in a long time, and Hannah will come again in the afternoon. Friday morning we go back to Albany for the last round of chemo and Monday, thank God, we'll be done with it. Life is rich and great. I am learning how to feel joy again, and it's a good thing. Thank you so much for encouraging me to put this book together. The response has been overwhelmingly positive and I feel supported and ready to do it. I am particularly moved that so many of you feel that I should keep everything pretty much as I wrote it. I agree, and will ultimately look for an editor who is compassionate about wanting to keep the original energy alive in the e-mails. And still more thanks for sticking with Peter and Forrest and me through this long year. Love to you all, Bar

 

092


Chemo is Done!!!!!!!
Tuesday, June 12, 2001 -- 3:57pm
Posted by Bar


Hello everybody! Yes indeedy, chemo is done for us. We finished last night at 9:03 pm,minutes ahead of schedule since Forrest's nurse mis-promgrammed the pump for his final med. It was supposed to infuse over 15 minutes and she programmed it for 5. YAY! Who cares? It did not matter, and we were thrilled with the final beep that said, "YOU ARE DONE!" It was very emotional to leave and to say good-bye, but mostly, we were thrilled. After going to the hospital over and over again for a year,we'd made lots of friends.The nurse who took care of Forrest on the night that wewere admitted last July 19th, was working last night too. She cried when we left. We gave her a big hug and took her picture. Then we left the floor. Forrest - in one of those fold-up strollers that you get from Wal-Mart - and Peter and I, literally ran down the halls, into the elevators, talking to everyone and singing, and then over the indoor bridge to the parking lot happily disturbing the peace as we went along. On-lookers seemed to enjoy our happiness, so I guess it was ok! (There's a line from one of Blue's Clues movies that sings "You can be anything that you wanna be, do anything that you wanna do, yeah, yeah, yeah, yeah, yeah". That's what we sang as we ran down the somewhat deserted hospital halls!! What a blast!) I sent you an e-mail last week before we left, but something happened with the server and it did not go out. I wanted to let you know that Forrest does not have chicken pox. Looks like it was poison ivy or a nasty, hungry spider. Many of you were worried about him because his immune system is suppressed. No worries there. I had also let you know about last week's AFP which at the time was not as good as we had dreamed of. It was/is 25 - essentially identical to the previous week's 23. Peter and I were so set on it going in to normal range that we were shocked and sickened that it hadn't changed. He had a long talk with the head pediatric oncologist while we were in Albany over the weekend, and she assured him that 25 is a very good number. What they don't want to see is a very sharp increase in his AFP. That would indicate renewed and energetic life in the cancer cells. They had warned us long ago not to get too attached to his AFP - that it would make us crazy, especially in this final phase as it seems to be dropping into the normal range. They expect it to go up and down. Everyone at the hospital is still very excited about how Forrest has done. The mood around him is VERY full of hope and life. It makes a world of difference ESPECIALLY coming from the medical staff. We got home last night just after 10pm and slept pretty well. This morning Forrest and I went off to school and he was really, really happy to be with his friends again. Hannah was here to play when we got home from school and now he is fast asleep. The chemo-related nausea kicked in while Hannah was here, so I sent her home and put Forrest to bed. I don't know if I can describe how good it feels to be here and to know that within a month or so the effects of chemo will have worn off and he will begin to feel like he should feel again. Afterall, he's got no tumors in his body, his cancer is essentially dead, the strength in his legs is much, much better, and it's summertime! YIPPEE! . Before I sign off, I wanted to tell you something about Peter since I don't know that I ever have in all of my e-mails: On Sunday morning, the Ronald McDonald House of Albany asked one of us to speak at their annual lunch for their volunteers. Initially, I thought that it would be me that would speak since I'm the PR person, or so I assumed, in our family. As it turned out, Peter was the one who went and he did a beautiful job apparently. He was very nervous on Sunday morning before he left - wondering what he would say and how he would say it. The whole thing is so emotional. I was saying things like "don't worry, just tell them our situation and tell them what we were going through and they'll love it and be moved and be grateful to hear your story etc etc". As I was coaching him in my sometimes know-it-all way, I realized that I was asking him to say what I wanted to say, or, what I thought they might like to hear versus what he might be moved to say. Thankfully, I finally shut myself up enough to just listen to his worry and to his thoughts. On Monday morning, when I went to Ronald's for my shower, I got to talking to Debby Moss, the director of Ronald McDonald's in Albany. She sat me down and said, "I have to tell you that the volunteers felt that Peter's was the most inspired and moving speech they'd ever heard at their annual lunch." She said that he was honest and emotional and true and grateful to the core and that his message really came through to them all. His angle was one of thankfulness for their willingness to volunteer and how much that changed our lives. He wanted to communicate how much their generosity had effected Forrest's healing and that's exactly what he did. I am VERY proud of him. Debby also said that over this last year lots of the volunteers have admired Peter and his fathering. She said in all of her 20 years of running the house, she has rarely seen a dad willing to be there ALL OF THE TIME for his child. She said that even the dads who could afford to take off from work, usually do not. Peter is the exception, and I have to say that I don't know if we would be where we are today if he had not been so committed to his role as dad. He's known all along that he HAD to be there. He would not have wanted to be anywhere else. Forrest and I have needed him and he has been there. There is no way I would have had the strength to do my mommy-ing if Peter weren't right beside me doing the daddy-ing. I keep thinking that if the power of parenting could help so much in Forrest's healing, just think what it does for a healthy child?? It's HUGE! I love this man. And I feel lucky and grateful to have crossed his path. So what do we do now? We go to Albany on Thursday to check Forrest's blood, and then we just keep going back but less and less frequently over time, just checking and waiting and living. It's a thrilling and acutely alive time. It could not be better. Much love to all of you, Bar

 

093


We're Still Here
Wednesday, June 20, 2001 -- 1:00pm
Posted by Bar


It's been a while, I know. I haven't felt like I had anything to say or report so I've kept from writing. After the last e-mail, I sort of felt like I was done, but alas, I have more to say. It's safe to say that I always have more to say. That drives Peter nuts a lot of the time..... It's Wednesday morning and that means that Forrest's AFP was done last night in the lab. I cannot tell you how awful it feels waiting for the results. Happily, the number is not doing some awful thing like rising to 1000 or 10,0000. Nor is it going into a truly normal range so it's hard to be thrilled. Today, his AFP is 32, up from 25 last week. Our oncologist is not worried and continues to feel like it will go down eventually - or not. Which is to say that Forrest may well live happily ever after with an almost normal AFP. That would most assuredly make me nutso over the next several years! When we called for the test result this morning, Albany Medical was installing a new computer system so we were put on hold. Finally the seceretary got on the line and said they could not find the results because of the new computer. Meanwhile, Peter and I were sitting in his office ready to puke from fear. I keep feeling like somehow this thing is going to come around and kick us in the butt again. I prepare for that, but there is no way to prepare really. I just have to keep on celebrating the distance that Forrest has come so far and be grateful. I'd rather the whole thing would just go away or be a memory or whatever! This post cancer phase is really hard. In the meantime, Forrest is doing really well - better than he ever has. Today he's a bit punky, (typical in the week after this particular chemotherapy). But in general, he's been full of more energy than I have ever seen from him. His strength is really coming back and he's talking up a storm. Peter and I are getting more and more work done - wondering how we got anything done in the last year with all that we have had to do in Albany. Truth is, we got very little done! We have been encouraged to finish up Forrest's therapy with some radiation to the part of his liver where the tumor was closest to his heart. The surgeon at Sloan-Kettering would feel better about the area he cleaned up if a little radiation were to follow. So.........off we go. It's VERY tedious. Forrest will get about a minute of radiation per day for 2-3 weeks (as of yet undetermined), not including the weekends. That means we'll drive an hour to Albany, sit in a waiting room for God knows how long, get a minute of radiation, and then drive home! UGH! Boring. I complain, but if it's the difference between really putting the final nail in the proverbial cancer coffin, I will do it with a smile on my face. In fact, radiation is kind of interesting. For kids at least, the technician makes a sort of mold of their body around the area to be radiated. That way, they will know that they are zapping exactly the right spot on consecutive days. I don't know if Forrest will be sedated yet. I haven't asked. I'm hoping that he will not be and that I will be able to stay in the room with him wearing a lead apron. We'll see. Just so you know, I think that radiation will start in a couple of weeks. Otherwise, it's hot. Peter is nearly done his shed. I bought an upright piano yesterday to put in my studio. Hopefully now I can get some music writing done. My big piano is in the living room where all the activity of our life takes place. I haven't played for more than 10 hours altogether in the last year because of the lack of privacy and general chaos of that room. I've needed to play, so I bit the bullet yesterday and bought a piano. It's very exciting for me. Now I will be able to come downstairs, close the door, shut my eyes and begin to make music again. I can hardly wait. It will be delivered on Friday or Saturday. I can see my life opening up again and it's really exciting, but also scary. I think that Peter feels the same way. He is changing course, it seems, and I'm glad for it. He's going to cut back on his hours so that he can be around here more and work on his wood turnings and generally be more creative. We are really grateful for the lessons learned in the last year. Summer is nearly here. Enjoy it. With love,Bar PS Forrest's graduation was on Saturday. What a day! He was so thrilled to be back at school with his friends. Everybody sang "Happy Birthday" to the 10 or so kids who have birthdays over the summer - including Forrest. It was very emotional for me. I have dreamed about celebrating his birthday this year so much. b

 

094


Some Thoughts on a Rainy Saturday....
Saturday, June 23, 2001 -- 8:59pm
Posted by Bar


It's Saturday morning and a very muggy one at that. Summer is truly here. I feel a little dubious about writing this e-mail, but I'm going to go for it. Don't worry. It has nothing to do with Forrest's health. It has to do with my insecurity around money and life. When I wrote that last e-mail to you, I debated telling you all about the piano that I was buying. So many of you are responsible for keeping me and my family alive financially this past year. I feel as though I have to justify to you the big expenses that we take on. In other words, I feel a little guilty. Here's the real truth. We have been given enough money to keep ourselves afloat, pay our bills, go out for dinner when cooking a meal is just too hard, and, most importantly, to do all of this without going to work in the morning. It's been the most incredible gift, and I believe has played a major part in Forrest's being here today. Having Peter around, and not having financial worries, has been huge for all three of us. Anyway, throughout the year, and for that matter, ever since Peter and I have been married, I have been neurotically careful about keeping my music expenses to myself. That is, if I can't afford it personally, the family purse is not tapped to make some not-really-necessary purchase related to my music-making. I am this way because I have a weakness for recording gizmos and musical instruments that I think I need, and it would be VERY easy for me to sink this little ship of ours if I were free to buy whatever my little heart desireth. I spend money only when I've sold enough CDs or done enough performances to cover the cost of whatever I think I need. So, since all of you have bought enough CDs to get me out of debt and into the black with all three of my CDs (YIPPEE!), I decided that having this piano here in my studio, despite the apparent luxury of it, warranted a return to the land of debt. Soooooo, I yanked out one of my long-since-tucked-away credit cards, found a super low, transfer-your-debt-to-our-bank-and-we'll-lend-you-the-money-you-need-for-a- low,-low-4.9%-annual-percentage-rate, and I made the deal. The piano arrived yesterday in all of its glory, and I have already played more in the last 24 hours than I have in the last 6 months. I'll need to build up strength in my fingers again, but otherwise I am thrilled......AND hoping that people continue to buy my CDs so I can make my monthly payments! I'll finish this long and maybe tedious paragraph by thanking you a million times over for supporting my music habit. It means a lot to me and I cannot say enough about how great it feels to buy a piano that I love. I'll take good care of it, and hopefully I will have another CD for you to get by the end of next year. We'll see. I hope that all of that doesn't sound too apologetic. I have to tell you, though, that I DO feel self-conscious about spending money these days - and I know that Peter does too. It's the oddest thing to be given so much and then to carry on living. We wonder if people think that we are taking advantage of our good fortune, or if we should live a more threadbare existence because it is somehow in better taste. I don't know. We decided early-on that the best thing for all three of us, and particularly for Forrest, was to carry on with life as though nothing had changed. There's one final comment that I'd like to make on this subject which I think is very important. I hope that you will tuck this thought away in your heart somewhere if ever the issue of giving money to a family in crises comes up again. All I can say is, do it! I cannot tell you how gigantic it has been for us not to have to worry about money this past year. And not only that, the supportive energy that comes with that money has been HUGE! Every time we went to the bank this year, more money had accumulated in the savings account that one of our friends had set up for Forrestjust after he was diagnosed. The gifts were mostly anonymous,and it's been remarkable and so loving and powerful to receive them. I cannot thank you enough! It is also worth adding that it is better not to ask someone who may need your help if they would call you if they need money. It is VERY hard to accept help let alone ask for it. If you think that someone may need your help, they probably do. They probably do NOT have the courage to ask for it even if you have offered. Besides, if you give it to them, they may not need it today, but just having reserves in the bank could make all of the difference in their frame of mind. My feeling is that this kind of help and generosity comes back to you. One book that I read suggested that a giver send their friend in need the amount of money that they would like to receive themself if in the same situation. My advice would be to give what you can. It'll come back to you somehow. I know this to be true. All of this said, please do not send us more!! We have plenty.Thank you one more time!!! Because of all of this thank-youing that I am doing, and because a lot of people, particularly here in Woodstock, would like to express their thanks for Forrest's healing, a Thanksgiving Celebration has been planned. A friend of mine named Katy Taylor, and her dance company, Mirabilis, will be performing in celebration on Wednesday night June 27th at 7:30 in Woodstock at the St Gregory's Church on Rt 212 just east of Woodstock center. This is a non-denominational celebration and I hope that any of you who can come, will come. Please bring your children, too. I hope that you are enjoying this indoor day. And if you are in the Philadelphia area like most of Peter's and my family, that your basement is at least sort of dry!! Much love and another thank you, too! Bar PS It's later on Saturday afternoon. I have finally learned how to write my e-mails to you off-line so I have the luxury of writing this one over time today. Just thought I'd include this little story: Forrest and I had a difficult encounter today. He woke up from his nap, and, as is typical of his post-slumber ways, he tried repeatedly to man-handle my chin. Now this may sound harmless to you, but after two years of his insisting on holding my chin even when I'm insistent that he leave my chin alone, (he's rather aggressive about it and VERY persistent),I moved away from him and said, for the gillionth time, "why do you keep doing that even when I've asked you stop? Are you trying to make me mad? Are you mad at me?" And he responded, "yes". I asked again, "are you mad at me?" He said, "yes". So I asked "why?" - a difficult question for a two year old to answer. Since he couldn't answer that question, I asked him if he was mad because I wouldn't let him touch my chin. And he said, "no".So I went on with, "are you mad because of cancer?" (I was just checking), and he said, most affirmatively, "yes!". YIKES! Turns out, he's mad at me for giving him cancer! I told him it wasn't anyone's fault, that cancer was just one of those things that happens. I couldn't very well say, "God gave you cancer so that you would learn and grow and inspire people with your courage and strength" - that would only confuse him. (And by the way, I don't think God did give him cancer. I think God, however you look at him, helped Forrest to cope and apparently heal from cancer......) Anyway, it was a difficult conversation, and I deferred to Peter for the discussion that will continue later on tonight. Peter's good at knowing how to deal with subjects that are too advanced for Forrest (and me!) to handle. No doubt we will have to deal with Forrest's anger on some level later in his life. For that I am grateful. b

 

095


Update
Friday, June 29, 2001 -- 12:36pm
Posted by Bar


Just wanted to let you know that Forrest's AFP is down again to 22!! Hallelujah! What another relief!! I was so miserable on Thursday morning about it. We generally get the results on Wednesdays since the blood test is run on Tuesday nights. I was convinced all day Wednesday that Peter had gotten the results and that he'd decided not to tell me because it had gone up. I didn't have the courage to ask, so I wandered around stressing about it all day and through the night. When we got to clinic on Thursday morning, I heard Peter ask the doctor for the AFP result since he'd forgotten to call the day before!! Sigh! When he came into the room where Forrest and I were waiting to tell me it was down to its-all-time-low of 22, I started to weep. I just lost it. He didn't realize I was crying, so he walked off to go to the lab for some other blood work that we needed to deliver. My sobs continued until one of the doctors came into the room and in a rather shocked way, asked, "What's wrong, did something happen??" Forrest was nursing and I was trying to explain to both he and the doctor that I was happy beyond words; that I had been so stressed out, convinced that Forrest's numbers were going back up. It was awful and wonderful. Forrest was confused, but he did seem to get it finally. I was really shook up. After that, all of the nurses came in one by one to say hello and cheer me up. No one knew what had happened, just that something was bugging me. It was very nice. I ended-up having to spend some time in the chapel alone so that I could get myself together again. I can't really describe how awful this waiting is.In many ways, I think that it is harder than all that we have been through. There's just no form to it. It just hangs over us like its ready to pounce or something. I hate it. I really do. Within a couple of hours, I was back on my feet. We were home again, and Forrest was playing happily as he has been all along these last few weeks. Thank God for that. We are glad and scared and thankful and a whole range of other emotions all of the time. Finally, I wanted to tell you that we have been picking lots of red clover blossoms this past week. Our friend, Maiya - our guardian angel really - has a gift for herbs and for making teas that are good for what ails you. She has been putting teas together for Forrest and me all year. Anyway, right now, red clover is in blossom and it happens to be a really good anti-tumorial. We have picked TONS of it since Sunday and it's been great fun and really relaxing. Maiya has set-up certain rules for herself which she "imposed" on us,like: only pick 1/2 of the blossoms that you see. (In other words, leave the other half to seed or to be picked by someone else who may need it, or for some little creature that could use its juice). Another rule is not to pick things that are too near to the road because they will have absorbed lots of toxicity from car traffic. She also encourages us to pick blossoms that are near our house. The idea is that whatever environmental details we experience are the same that the plant has experienced, which will add to its therapeutic benefit. All of this may sound too crazy, but I have to say, it has opened my eyes - quite literally. I went out this morning to pick at a field down the way. On my way there, I walked in and around the straight-line path that I usually take. I discovered all sorts of new areas. I saw all kinds of plants I can't name. I probably got poison ivy (but I was happy doing it!). When I approached a blossom with a moth or butterfly already on it, I had to discipline myself to let them be. It brought up the question "who needs that blossom more, me or you? If I answered the question "I need it more," I was very aware of the environmental questions we all should be asking, and industries should be asking with every thing that we consume. And if I take every blossom, there will be none for next year or coming generations. You get my drift. It has been a learning experience and really brought to the fore all of the issues that our culture faces with regard to taking care of our planet. (I was suprpised to feel how nervous my body got when I went off the path that I always walk when I was looking for red clover this morning. I could feel my body wondering what terrors lurked in the woods around my house? What a wimp! But an interesting metaphor for other parts of my life......) Besides all of that, I have to say that I have gained tremendous strength from walking down the street into the meadows around here, picking blossoms that could very well keep cancer from reforming in my baby's belly. What a thought! I felt like a real woman; a real momfighting for her son's life! I can see myself being increasingly involved with this sort of stuff. I mean, maybe someday I could learn to cook something other than macaroni and cheese for Forrest!? Gotta go.Hope that all is well in your meadow! Bar

 

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