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Wednesday, January 17, 2007 7:26 AM CST
The news we got on Monday was good, but preliminary. As always, Dr. Halpern likes to see the written reports before he tells me anything of a definitive nature. That call came last night close to 5 PM. There are no tumors showing up on CT, which makes me soooo happy. The PET is still lighting in his tonsils, but no worse than in October. I just wish that would go away. I know that Dr. Halpern and Dr. Wolden feel that it is not metastatic cancer, but it leaves a lingering worry. That is the way things have been for him right from the beginning. There is always some qualifier mixed in with the good news. You would think that I would get used to it, but I don't.
Both Jack and I are having some difficulty adjusting to life post his cancer treatment. I am finally processing the events of the last two plus years, and it is painful. Much more so than I anticipated. Dr. Halpern equates it to post traumatic stress disorder, and tells me that it is normal. His words reassure me and motivate me to get Jack the help he needs to get over this next hurdle. There are people on staff at Tomorrows Children to help, and CancerCare has an office in Ridgewood, where I have been talking to an amazing counselor for over a year.
I believe in Jack and in his ability to face adversity. In my heart, I know that both of us will find our way. I hope it comes soon.
On a happy note, Kate is now a licensed driver! Her brother, Alex, requested her first official trip. He drove her to Ridgewood HS to see friends last night, and Jack went along for this historic event. Life marches on.
Sunday, January 14, 2007 5:11 PM CST
Tomorrow is Jack's big day. Today is Kate's. She turned seventeen this morning and is getting ready to take her road test first thing on Tuesday. As is her way, she made this appointment on her sixteenth birthday, so not a moment would be wasted. Celebrating her birthday has taken the edge off tomorrow's tests for Jack. We went out to lunch with my mom and focused our attention on something a bit more fun.
Jack's scans require that he sit quietly for 48 hours before the tests. The reasoning is that the technicians do not want to confuse muscle repair with uptake on PET. This time is never easy for him, and by the end he is jittery with pent-up energy. The timing was actually perfect for Jack to work on a literary essay for his English teacher, Mrs. Munro. He has connected with her throughout the day via an electronic blackboard of sorts, and has done a nice job in his writing.
We have spoken on and off about his scans, me and Jack. The other day he sat on the edge of my bed with his back to me, as he was dressing for the day. He took his pajama top off, and I could see the clear lines of his shoulder blades as he hunched over to reach for his shirt. In an instant, I could see the worry in his slim form. Whenever Jack has something difficult to ask, he has a habit of facing away from me. I knew that this was one of those moments, and waited quietly while he put his thoughts into words. He asked me if I was worried about his tests, and I took my time before answering. To me, it was important not to sound cavalier, or to brush off his concerns. I told him that I was nervous, but not worried. It is hard not to be. The timing off treatment is almost exactly as it was when he relapsed last year. We both know that, and it fuels our anxiety. Then he asked me to tell him what it was like for me when he was undergoing transplant in the spring. It was hard for him to express what he was feeling, but then he simply asked. He wanted to know if I ever felt like giving up. I watched the arch of his back tighten, and it broke my heart that someone so young should have thoughts like these. My answer came ready and sure. It had never occurred to me. He asked me about his odds for survival, and if that had any effect on my feelings. I explained that he had something so much better than "the odds". He had "The Jack Factor". He had the right attitude and the love and support of countless friends and family. Of course, I told him, you will survive. I watched the tension ease from his slender shoulders as he turned around to face me for the first time. His beautiful face formed the sweetest smile, and I had to keep myself from crying. As quickly as the moment began, it was over. He slipped his shirt over his head and was on to his next task. It took me a bit longer to recover.
I will write as quickly as I can, after we return from seeing Dr. Halpern. Alex and Kate both have doctors appointments tomorrow, so perhaps I will write on Tuesday at the latest. Please say an extra-special prayer for my sweet boy tomorrow.
Sunday, December 31, 2006 6:18 PM CST
The last few weeks have been so jam-packed with good things for Jack that it is hard to know where to start. Here goes. On December 12th, the God Squad interview with Jack and Ray Negron aired. It was sweet to see them both together on the air, and Father Tom and Rabbi Gellman were so kind to Jack. Somehow in the editing, Mike Geoghan, the show's producer was able to capture Jack's charm.
On December 16th, Mike Marion, Rich, Alex and Jack went to MSG to see that now-infamous Knicks game with the Denver Nuggets. The tickets came courtesy of Mike Breen, the NBC sportscaster for the NBA. Alex and Jack were sitting courtside behind the Nuggets for the entire game! Mike and Rich sat several rows behind. Mike came for lunch, which was a treat for me, and then the boys went into the city early. Jack and Alex got to see the tree at Rockefeller Center and some of the holiday decorations before heading to the game. Naturally, when Jack walked in the door all he could talk about was the fight and how cool it was to be sitting so close to all the action. Funny how things work out. While they were there, the boys got to meet Walt Frazier. He took some photos with the kids and signed autographs. I think Rich and Mike were more excited than Alex and Jack. When they arrived, Jack gave Mike Breen a JACKstrong band. Mike read the note the kids from school wrote, and told Jack he was proud to wear it. Jack beamed as he told me the story, and I couldn't help but feel grateful to this man for making Jack smile. It gets me every single time.
On the 19th, Jack went into the NY Board of Trade for a press conference regarding The Boy of Steel. Ray Negron's assistant, Theresa, called to ask Jack to be with Ray as they announced the details for an upcoming movie deal. Ray spoke with emotion as he introduced Jack, and asked Jack to speak about his battle fighting cancer. As is his style, Jack spoke with ease and eloquence about the events of these last two years and the audience embraced him. I think that these are the times that help me get over the hurdles. I know how fortunate Jack has been to meet so many remarkable people during this journey. I know, too, how much harder it would be for all of us without this support. One final note - as with the book, Ray has decided that all of the proceeds from the movie will be donated to various children's charities.
On Christmas morning, Jack opened the "stocking stuffer" that Mike Marion left here for him on the 16th. Inside this neatly wrapped package was a signed photo of Jack's golf hero, Tiger Woods. It reads " To Jack, All the Best, Tiger Woods" Rich almost passed out! I have always considered Mike to be the closest thing Jack will ever have to a Fairy Godmother. Now it seems that he's trading in his wings for a Santa suit. I have no idea how he got the photo. I only know that Jack had seen a signed photo at Mike's house and loved it. That was all it took for Mike to move into action. See what I mean? Truly, Mike has meant so much to all of us, but especially to Jack and Rich. Time and time again, he has selflessly put Jack first. He has become for me the embodiment of the "silver lining".
Jack had a pulmonary function test on the 27th with my amazing friend, Lori, administering the test. Dr. Ngai came in before we got started and I told him how grateful I was to have Lori here. He said he wanted to make things go easier for Jack, so they brought Lori in to work in Hackensack. Next time, he said, they will come to our house. Jack laughed and told Dr. Ngai this would do just fine. I have not gotten any results, which is a good sign. When I see Dr. Halpern on the 15th, I will know more.
On the 28th, Jack, Kate and I went into CBS studios for a tour of the newsroom, and to watch the live broadcast of the noon news. We were all in the studio for the entire show. Our host for the afternoon was Brendan Keefe, CBS News correspondent. My mom met Brendan back in September after Jack spoke at the Cox Classic. Brendan works with John Bolaris, the weatherman, who had Jack on the air with him during the broadcast. As they were having lunch in a local restaurant a table away from my mom and uncle, Brendan realized that the boy John was speaking to him about was the same child my mom was speaking about. It sure is a small world. Anyway, Brendan called back then to offer to have Jack visit and we finally made it in. Brendan took all of us around to see the technical people that make the news happen and Jack had a great time. It was a terrific way to spend a day during the break.
There is so much more to say, but I am getting tired. Here's to a terrific, healthy start to the new year.
Friday, December 15, 2006 3:08 PM CST
It has been more than two weeks since I have written, the longest I have gone in posting a journal entry. I am testing the waters, kinda practicing for taking the training wheels off for good. It is hard for me to let go even though I know it is time. The outpouring of support and concern for Jack has meant so much to all of us, and I am grateful for every single entry in his guestbook. Yet, how can Jack resume a normal life when I am still talking about his illness? I have decided to write a few more times since Jack is just a month away from his quarterly PET/CT scans. Hopefully the results will be positive and I can end on that note.
Jack's bout with shingles has been pretty painful, as expected. He continued to develop new lesions for about a week, despite being on an anti-viral. I visited the NIH, Mayo Clinic and Med Line web pages in an attempt to educate myself about Jack's care. They were all very consistent and somewhat depressing. It is an illness of the elderly and the immuno-suppressed, people with cancer and HIV. I wish I had been further along in my reading about late effects stemming from his chemotherapy and radiation. Perhaps I would have discovered that he was at risk, perhaps I would have realized why he was in such pain. It makes me hyper-vigilant in my determination to understand the road that lies ahead. I am taking my reading in small doses. It is all I can manage.
The book I am reading, Childhood Cancer Survivors, a guide to your future, is beautifully written by the mother of a leukemia survivor. There are so many poignant passages written by the children and their parents, and I find myself identifying so easily with their stories and their heartaches. While there is so much to celebrate, the author gives credence to feelings of loss. She encourages her readers to get whatever medical assistance is necessary to understand and treat the side effects of cancer care. She has my attention.
So, remember the story about my friend, Lori, performing a PFT for Jack, and attaining really good results? I was wishing that she worked for Hackensack when she called to tell me the funniest story. It seems that Hackensack is creating a position in pediatric pulmonology and was looking for a tech dedicated to pediatrics. A friend of Lori's suggested that she apply, and after much thought and 26 years with her current employer, she decided to give it a shot. So, which doc interviews her? You bet, Jack's pediatric pulmonologist, Dr. Ngai. Of course, he remembers her success with Jack, and before she knew it, they offered her the job. All I can think about is how lucky Jack is to have her performing his tests for him. We are both ecstatic and grateful for the break. It sure is a small world.
Friday, December 1, 2006 4:39 AM CST
I am exhausted by the events of the last few days. Most of it is mental. On Tuesday morning, Jack was still complaining about the pain being excruciating. I was beginning to lose my patience, which is an absolutely awful thing to do. But, there was no break or tumor on his x-ray, he had gotten his first good night's sleep on Monday night and physical therapy gave him some relief. I thought he pulled a muscle lifting Alex's weights. So, Tuesday morning I told Jack to knock it off. He had been through so much, and it seemed out of character for him to be acting like this over a muscle ache. I should have put those two thoughts together, but instead I gave him a dressing down. Hours later, when I saw the rash, it all made sense. Rich had shingles over 30 years ago, and I remember how painful it was. He has an extraordinarily high threshhold for pain, and it was unbearable.
It broke my heart that I had yelled at Jack. In all honesty, I can't forgive myself. But, Jack is the sweetest child I know. When I told him how I was feeling, he said, "Mom, I think you need a hug". I wept in his arms, and asked him to accept my apology. He said, "No apology necessary". I cried harder.
On our way home from the hospital, he told me that he didn't realize that I was worried about his cancer coming back. I told him that it will always be in the back of my mind, and that I was not accustomed to being a worrier. The most important thing was that I didn't want him to become a worrier, too. He thought about it for a second, and said, "Mom, I'm not a worrier, I'm a warrior"! God, I love this child. This experience has shaped the young boy he has become, and I am so proud of and awed by his strength. On days like these, he keeps me strong.
On a medical note, Dr. Halpern believes we caught the virus early. I spoke to him yesterday, and told him that the lesions were still blooming, with new ones forming over the last two days. I don't think he was particularly happy, and he asked that I call again today. Dr. Stoller called last night and said that Jack could go back to school on Monday, if he could manage the pain. He is not contagious. My biggest concern is that he is falling behind in his work again, and it is so hard to catch up. I wonder how much longer it will be before Jack's life resembles that of an ordinary middle school child.
I finally spoke to Dr. Wolden yesterday about Jack's PET/CT scans. She read them with two of her residents, and feels confident that Jack's tonsils are not cancerous, although she cannot say 100 percent. I know that there are no guarantees, but I believe in her, so we will leave Jack's tonsils alone.
On a final note, Jack and Ray Negron will be on the air with The God Squad on Tuesday, December 12th at 8 AM, channel WLNY-TV55.
Wednesday, November 29, 2006 4:44 AM CST
I think I am losing my mind. Actually, I am certain of it. More than anything else, I want to put Jack's illness behind him, behind all of us. It feels almost impossible to do. Something always seems to happen. Case in point. Jack has had a harrowing few days, and only yesterday were we able to understand what was happening. I would like to go on record and state that he was accurately diagnosed by his favorite faux doctors, Mrs. Coakley and Mom. On Saturday, Jack began to complain about excruciating pain in his right hip. Now Jack is no whiner, so I took this seriously from the start. That day, I gave him Tylenol first and then Advil. Nothing seemed to help. He was up and out of bed three times complaining that he couldn't sleep Saturday night. I thought that he might have pulled a muscle and tried massaging the area. No luck. We tried a topical cream for muscle aches, it didn't help. Finally, I called Dr. Stoller's office and asked if I could give him a Valium. He takes those before his PET/CT scans and I know they are muscle relaxants. Dr. Rosenzweig said to give it a shot, so I did. He got absolutely no relief.
At this point, I genuinely began to worry. I have been reading a publication from the Children's Oncology Group on late effects for his disease. I happened to be reading the chapter on secondary cancers. It is an ugly truth that children treated for blood cancers have an increased risk of developing another cancer, bone cancer being one of them. Now, this isn't supposed to be a threat for several years, but that didn't stop me from jumping to my own conclusions. By Sunday night, I was out of my mind. Jack was in agony. Neither of us slept as he tossed and turned throughout the night. Monday morning I called Dr. Stoller's office right away. She was scheduled to be in at 1:15, and they gave me her first appointment. As always, she was deliberate in her exam, asking Jack several questions. I could tell that she wasn't convinced that it was muscular, either. She was worried about his bone, and explained to Jack that she needed to get an x-ray to make sure nothing was broken. For my part, I was really hoping for a clean, obvious break. Who knows, maybe the chemotherapy and radiation weakened his bones enough to cause a problem. I took him up to Mahwah Radiology, and the technician that took Jack's x-rays said it would be about two hours before they had some answers. My sister-in-law, Joann, said they were the longest hours of her life. For my part, there have been way too many contenders to pin the title on this one, so I waited. Coincidentally, Rich had to take Alex up to see Dr. Stoller. Amazingly, he has his second case of poisin ivy, long after the season has ended. It is almost winter. While Rich was with Dr. Stoller, the imaging center called to say that Jack's x-rays were negative, no breaks, no tumors, not that they could see, anyway. I was incredibly relieved. Jack went for physical therapy, and Joy was able to give him some relief from the pain. Also, Dr. Stoller gave Jack a prescription for Tylenol with codeine, and he got his first good night's sleep Monday night. At this point, the plan was to see if he got better over the next few days. If not, we would think about a bone scan or possibly an MRI. I knew, also, that if things didn't resolve, I would need to call Dr. Halpern. But it never came to that. Yesterday, Jack asked me to look at a rash that was developing on his leg. I was on my way out for a walk with Kelly, and bent down quickly to take a look. The minute I saw it, I knew exactly what was wrong. Jack had shingles. I called Dr. Stoller right away and she said it all made perfect sense now. The rash explained everything. I called Dr. Halpern, since Jack was supposed to see him on Thursday, and brought him down a couple of days early. He confirmed the diagnosis, gave me a prescription for an anti-viral and we were on our way home. Jack had another good night's sleep last night. Finally, so did I.
Saturday, November 18, 2006 5:36 AM CST
It has taken me a long time to write. I know that. Part of it is that I am so busy that it is hard to find the time. But there's another side of this, too. In this family, we are all trying so hard to pick up our lives where we left them two-plus years ago. There is a part of me that knows that I need to let go of Jack's caring bridge site to do that. It is almost time. So, to all of you who have been so devoted to Jack, so generous in your time and thoughts, get ready. I will probably write once more.
Okay, let's talk medicine. I spoke to Dr. Ngai myself this week. Rich faxed him the reports from Lori, and I could tell by the content of what he was saying, that he went over them with a fine tooth comb. He was concerned about the differences in the equipment at each hospital, so he took the raw data only, and compared Lori's numbers to Hackensack's. He was pleased to see that Jack has made progress, and that Dr. Stoller's numbers and Lori's tracked closely. Both of those tests were far more positive than the test Jack had on October 9th in Hackensack. He is making strides toward recovery. It feels really good. Dr. Ngai wants me to keep the prescriptions that he has given me for an inhaler and steroids for Jack, but I don't have to fill them just yet. Jack will have another PFT on December 27. Let's hope the technicians in Hackensack have the talent to get the results that Lori can from Jack.
I still have not spoken to Dr. Wolden. I called on Thursday, but her phone just rang. I am wondering if she will be away for Thanksgiving next week, but I will call again. I am trying to figure out whether I am so sure that things are fine, that I am lax about getting an answer, or whether it is the other way around.
Yesterday was our annual Turkey Trot at BF Middle School. This is a wonderful event that combines charitable giving with physical fitness. The children and their parents run laps to earn turkeys for the Social Service Association of Ridgewood. I started doing it five years ago when Kate was a sixth grader. For those of you who know me well, I run like the wind, and appear like a blur to those I whiz by. Okay, I lied. I don't whiz by anything. In fifth grade, Alex had to give all of us Native American names. Mine was Runs Like Turtle. My very kind running partner, Monica, tells me all the time that I am ahead of everyone who doesn't get out there. So I keep going. When Jack got sick again in February, I just stopped running altogether. But about six weeks ago, Monica and I hit the streets again. I am now running 24 minutes, closing in on my goal of 30 minutes, three times a week.
Back to Turkey Trot. Each year, I take Sparky Phillips with me to run. It is our annual Girls Day Out. She is the sweetest Bichon Havinese, and the darling of the event.
She also takes the attention away from me, which is a source of great comfort to my children, who hope every year that I have forgotten the date. Anyway, yesterday we ran 13 laps together, the equivalent of almost six miles. Sometimes Sparky ran with Jack, and towards the end, I carried her like a football, cause she was tired. The best part of the day for me was seeing Jack run. His cheeks were rosy and his heart was pumping. He looked fabulous. As Sparky and I ran, we saw teachers and other parents who commented on how fit Jack is looking. God I love those folks at CORE.
I just read Woody's entry to Jack. In the next week or so, perhaps when you log on to read my journal, you can send a last message to Jack. It really means alot to both of us, and would be a great way to send him back to a simple, normal life (for Jack, that is).
One last note, The car we saw on the Grand Central belongs to Pat Lang, Jack's very own angel at BF. Her son is a newly licensed airline pilot, and he was driving out to work at Kennedy. Finally, I have to give credit to Bob Schecter for the creation of those wonderful bumper stickers. Bob, each and every time I see one, it makes me smile.
Friday, November 10, 2006 6:48 AM CST
Kate and I are down in Philly visiting four local colleges. Her experiences at The Bergen County Academies have helped her decide that she wants to pursue a life in science, most likely some form of biology. Yesterday we went to the University of Pennsylvania and Swarthmore. Today it is Haverford and Bryn Mawr. It is a very emotional experience for both of us. While I want her to go and have a life rich with studies she is passionate about, it breaks my heart to know we have so little time left.
Enough of that. I did finally get up the nerve to call Dr. Halpern about the findings on Jack's PET/CT. I also went back to review the August reports. This growth that I was worried about appears to be his thymus, rebounding from chemotherapy. I could not make the correlation on my own, because his docs are measuring the change in size for the first time, without making specific reference to the thymus. Dr. Halpern was terrific, as he always is, and reviewed the reports line-by-line with me until my worry eased. He also spoke to Dr. Wolden about his tonsils. She has read the reports, but is having trouble uploading the actual scans. At this point, she concurs with Hackensack, which eases my mind. I will call her again next week, because I really want her to put her eyes on the raw data. The upshot of all of this is that Jack can go back to a normal schedule of PET/CT scans. We have the next three months off, a nice break for the holiday season.
On Wednesday, in torrential rain, we drove out to Long Island for the taping of The God Squad. Father Tom Quinn from Mt. Carmel joined us, which was such a treat for me. As always, Jack loves spending time with Ray Negron, and it was fun to watch them together on the air. It was something of a strange experience, because they didn't spend any time talking to Jack before he went on the air. Fr. Tom Hartman asked me about Tomorrows Children's Hope, and I wasn't sure he was talking about Tomorrows Children's Institute, so I didn't know how to answer. The program will air in about a month, and I will get the date and channel out as soon as I know it. Now, here's my favorite part of the day. Driving in the rain was incredibly unnerving due to the flooding and traffic. The trip took two hours and fifteen minutes. At one point, the car next to us hit an enormous puddle, and swerved into our lane. We had no view of the road as water covered the windshield. When the wipers cleared the water, I could see the bumper of the car directly in front of us. Okay, Woody, we are out on the Grand Central in Long Island, and what do I see? Yup, a bright, beautiful, blue JackStrong bumper sticker. Talk about a tension tamer; you made us laugh. Here's my next question. Who was driving that car? It was a new, green Honda Civic with Jersey plates. Call me if you know.
The last piece of info to update on Jack is his meeting with Dr. Ngai. We finally got to see him on Wednesday afternoon, and he recognized Jack right away. He was one of the doctors in the audience when Jack spoke at the hospital dedication last December. This happens to Jack all the time. We find ourselves in a new department, meeting a new physician, only to discover that they already know Jack. Anyway, Dr. Ngai was extremely thorough in reviewing Jack's history and in his examination. It broke my heart to see the changes in his lung function as a result of his last three rounds of chemotherapy. Dr. Ngai believes that he will regain some of it, but he will probably need medication to help for the short term. I told him about my friend Lori repeating his pulmonary function tests, and he thought that was a great idea. So, Lori's husband, Ken, took Jack to see her yesterday. Rich told me last night that Lori had great success with Jack, and felt that Jack has made progress since his last tests. I will know more when I speak to Lori this weekend.
It is time to leave for Haverford with Kate. I will write early next week.
Monday, November 6, 2006 5:30 AM CST
We never did see Dr. Ngai last Monday. He had a family emergency and rescheduled for Thursday. His office called again on Thursday to cancel and our visit has been planned for Wednesday. We'll see how that works out.
I have finally sat down with a fine tooth comb to review the reports from Jack's PET/CT scans. Everything looks as Dr. Halpern said, except that the radiologist has noted a soft tissue growth in his mediastinum which appears larger than in August. Why don't I remember reading about this back then? Anyway, the mediastinum is the area of the chest where Jack's cancer was most pervasive, and my body goes into worry-mode when things happen there. Today I will try to speak with Dr. Halpern and Dr. Wolden.
On Wednesday, Jack and I will go out to Long Island to be interviewed by Fr. Tom Hartman and Rabbi Gellman for their cable TV program "The God Squad". Fr. Tom has been on the air many times with Don Imus and I have seen him on Good Morning America. Ray Negron will speak about his book, The Boy of Steel, and then Jack will talk about his experiences these last two years. I will let you know when the program will air.
Thankfully, Kate took her SAT II on Saturday and was happy with her work. I am relieved that it is behind her. Thanks to everyone who sent her e-mails of encouragement. Next up is the chemistry SAT II in January, followed by the SAT in March and then finally the SAT II in biology after her AP bio exam in May. Quite a workload for a kid of sixteen.
Sunday, October 29, 2006 7:25 AM CST
Jack and I saw Dr. Halpern on Friday, and he is pleased with Jack's progress. Although he hasn't gained any more weight than that measly half a pound, Dr. Halpern loves that he looks so darn good. Jack is happy, engaged and energetic. It is enough for me, too.
On Monday, I will take Jack to see the pediatric pulmonologist, and we will get his thoughts on the asthma issue. Jack's shortness of breath has resolved, due in large measure to his work with Frank at CORE. Think about this. It just might be that Frank has saved Jack from an untimely diagnosis of asthma, and the drugs that come with it. If Jack had not been making steady progress, I would have placed more value on those PFT results. Now I am not so sure. But I do have Lori's thoughts and Dr. Stoller's test results to discuss with Dr. Ngai tomorrow. It should prove informative.
Dr. Halpern has given me copies of Jack's PET/CT reports, but I have not had a chance to read them yet. I think I'm turning into a bit of a slacker. Strange, but it feels kinda good. Dr. Halpern FedExed CDs of his scans along with copies of the reports to Dr. Wolden, so I have a bit of time before I have to know what I'm doing. It all appears to be really good news. Okay, I lied just a little. I did quickly scan those reports and it looks like the SUV values are the same or lower. Furthermore, the swelling of his lymph nodes is down, meaning that the August scans were probably picking up something physiologic. My anxiety is beginning to ease.
In the midst of all this, Kate is planning to take her Math IIc SAT II on November 4th. As many of you know, she is the most self-directed of my three kids. I don't think I have been involved in a single piece of her academic work since elementary school. So, I don't give any thought to this intense one hour exam until she tells me last Saturday that she is performing poorly on the diagnostics. As she is taking calculus this year, I have trouble registering this news. I don't understand how this can be until I realize that she doesn't commit anything to memory. She is a derivative learner. Not only that, she has no speed. The test requires that she complete 50 incredibly detailed questions in 60 minutes. So, at 10:30 PM, just 2 weeeks before the test, I am in Barnes & Noble with a stack of books, trying to find a way to help her. My nerves are already shot from the ordeal that day with Jack. His tests have been cancelled and rescheduled for Tuesday. I am ready for a nursing home. Instead, I am up working through the night on trigonometry, solid geometry and logarithmic functions. Why am I telling you all of this? Because, once again, one of my amazing friends jumps in to help. I am in complete panic mode when I get a phone call from my friend, Marisa. She wants to do something, but hasn't done this kind of work in years. I thank her and hang up. As I work through every spare moment this week, it occurs to me that I need to make flashcards for Kate that will help her commit to memory all of these hideous formulas. Enter my pal, Marisa. So, on Friday we have lunch together while her youngest daughter naps. I labor through problems that are difficult and time consuming. Marisa prepares flashcards, and it is nice to take a break from being alone with this. When I return home, bearing Marisa's gift, Kate gives me the most beautiful smile. It is a good way to end the day.
Wednesday, October 25, 2006 8:31 PM CDT
I have the most wicked headache, the equivalent of the aftermath of spending the entire day with Uncle Richie. So, my sense of humor is still intact, therefore the news on Jack must be good, and it is. I am not going to write very much because I am emotionally spent. Jack's CT was negative, meaning there are no visible tumors. Is that incredible, or what? I am beyond elated. His PET is a bit iffier, like it was in August. Actually, there is no change. His tonsils are lighting up with the same intensity , but, that's okay. Dr. Wolden and Dr. Shah told Jack that as long as the scan was not more intense, we could assume there was another reason, read who cares as long as they don't think it's cancer. Write to Jack, if you can.
Monday, October 23, 2006 5:01 AM CDT
I am in a bad mood. Again. These feelings, this sentiment grates on the nerves of the people I live with. It is hard to blame them. Now, don't confuse bad mood with bad test results. They are not the same. In fact, it is way too early in the day for us to know anything. But, there's nothing to know today anyway. That's why I'm in a bad mood. As we were preparing for his scans on Saturday, Jack had a question about the placement of his numbing cream for the IV. I called the imaging center to speak with one of the nurses, and found out that they were experiencing problems rebooting the software for the PET/CT. If only they had my friend, Mike Moran, on staff none of this would be happening. Too bad for me. Anyway, we were told to hold off at home while the techs did their work. Half an hour later they called to cancel. Jack was devastated. By then the numbing cream was oozing out of the adhesive that holds it in place and I had Saran-wrapped his elbows in an attempt to do damage control. It was about as effective as you might think, and Jack was tired of hyper-extending his arms like some Halloween monster. Nothing to do but start crying. The tension and frustration combine to make a wicked cocktail of emotions and it is best to just let it out. The days that lead up to this test are difficult for Jack. For the 48 hours prior, he has to try and sit still. Has anyone ever seen Jack try to do this? It is brutal to watch. It's not that he doesn't understand, he gets it. But his body hums with a frenetic energy, which is the envy of the exhausted and dazed members of this family. Sit on the couch, Jack. Please, for God's sake, stop chasing the cat. Could you just put that ball down and STAY STILL? Truly, I don't think he can, but he tries so hard, and that just makes me cry harder when things fall apart like they did on Saturday.
So we are back at it today and tomorrow. No activity, no carbs or fats in his breakfast and lunch tomorrow, and lots of water. He fasts for four hours and then gets scanned tomorrow at 4 PM. Please say a prayer that that stupid software is working.
Now we come to the time in our program where we thank the countless people doing their part to make Jack well. I'm not talking about Jack's doctors and nurses who get paid to take care of him. No, these are friends and family members who have experience, both personal and professional with his latest travails. Today, it is his pulmonary function tests and potential asthma diagnosis that are up for discussion. Unbeknownst to me, my friend, Lori Chiavelli, performs PFTs for a living. She offered to take a look at Jack's test results and help me learn to read the data. Since Dr. Stoller's test did not show any abnormalities and I am headed to see the pediatric pulmonologist next Monday, I was excited to learn. However, two years of attempting to learn the nuances of Jack's care have dulled my senses, and it took me quite a while to understand what Lori was trying to teach me. She was undeterred. Lori stayed with it until I could repeat back to her what we had seen in those tests. Potentially, there could be another reason that Jack performed better after the albuterol, and I am now comfortable talking to Dr. Ngai. Thank you also to all of my mom friends who have written about treating their kids for asthma. It was a perfect primer, and I am more relaxed about helping Jack.
On another front, Jack is making tremendous strides in regaining his appetite and his strength. Thank you to all of the relentless participants in the "Let's Get Jack To Bulk Up" program. He continues to gain weight, rather than lose, and this provides me with a wonderful sense of calm. Truly, I just didn't know how to get the job done. Thank you, Barbara, for harnessing the power of that amazing Help Circle. It was an absolute stroke of genius.
When I think about his increased physical strength and stamina, there's only one person to thank. Frank Giannantonio at CORE has been working with Jack twice a week for over two months now. They are the best days of the week for him. When Jack is having trouble starting the day, all I have to do is check the calendar. If I'm lucky, it's a "Frank Day". It's enough to get him out of bed and moving. He even has "CORE clothing" which makes it easy for him to workout with Frank. It is all UnderArmor, which comes to him in the mail, from his shopping buddy, Mrs. Condella. In the spring, when Mary still lived in Ridgewood, they did their shopping together. Jack liked it better that way. But, Mary moved to New England in July and we miss her. I am happy that she is still a part of Jack's life.
It is time to start the day, time for me to gently nudge Jack into his routine. These moments are some of the best of the day for me. I always allow a couple of minutes to stare at him while he's sleeping before I bend down to kiss him. What a way to start my day.
Thursday, October 19, 2006 6:49 AM CDT
I spoke with Dr. Halpern early Monday morning and he still had not gotten the report on Jack's pulmonary function tests. He got right off the phone with me and called for the results, which were mixed. Jack's function has decreased since he had his two rounds of salvage chemo and the high dose chemo before transplant. The question is, "Was he headed there anyway"?, but I think it would all be conjecture, as it doesn't much matter. This is always hard for me, because I want to know. So, he's got reactive airway disease, which sounds like a euphemism for asthma. The bottom line here is what to do. It seems that when he was given albuterol, it opened up his airway and he could breathe with more ease. That sounds like good news to me. Dr. Halpern wants Jack to see Dr. Pakkay Ngai, a pediatric pulmonologist at HUMC, so we are scheduled to go on October 30. If anyone has experience with asthma, I would love to hear from you.
I had a really good idea. Jack's PET/CT is scheduled for this Saturday. The big question left to be answered is whether his tonsils will be reactive on PET. In August, Jack had a wicked sore throat going into his tests, and I believe that it skewed his test results. This time I am a little bit wiser. I'm thinking that if his throat is sore, I will hold off just a bit on his tests. In this way, we can eliminate the issue of tonsillitis. Dr. Halpern agreed that I should have Dr. Stoller look at his tonsils, so I took him up there yesterday. His tonsils looked normal, and we are both keeping our fingers crossed that it will last until Saturday. Of course, that was yesterday, and today he woke up with a sore throat. Why can't this little boy catch a break? Truly, I'm not sure what to do. The imaging center needs time if we are going to cancel, and I am headed in to Memorial Sloan-Kettering today with my dad, who is a cancer survivor. Dr. Stoller leaves today for an out of town conference, so seeing her tomorrow is not an option. On these days, in these situations, I resort to my Scarlett O'Hara way of doing things, and decide I will think about it tomorrow.
While we are at Dr. Stoller's, she wants to talk about Jack's pulmonary issues. She has requested copies of his reports from the hospital via fax, but they have not arrived. So she decides to use her own equipment and test him right there. His results appear to be normal, and this raises questions for me to ask of Dr. Ngai. She also wants to see what the hospital reports say. Again, we wait.
Please say a prayer for Jack on Saturday morning. We are due at the imaging center at 9:45, with his IV getting started at 10. Jack always has trouble with the IV because it is painful. It is hard for me to watch him struggle, because there is nothing I can do. His results won't be read until Monday, and I will try to write as soon as we have the details.
Thursday, October 12, 2006 4:34 AM CDT
I know, I know, but I am so far behind in everything that taking the time to write seems like a luxury. Of course, it doesn't seem like that to the people who love Jack and are anxious to know how things are going for him. So, here I am, in the early hours of the morning trying to catch up.
The biggest news here is that Jack was able to complete his pulmonary function test on Monday. As of late yesterday afternoon, Dr. Halpern still had not gotten the results. The data must be read and interpreted by a pediatric pulmonolgist before Dr. Halpern gets a written report. It all takes time, so we wait.
It is now time to report on the success of our "Can We Get Jack To Gain Weight Program"? Based on Uncle Richie's wildly successful personal story, I have crafted a winning strategy. Thank you to all of the other successful entrants for providing your own tips as well. For most of us, it appears that gaining weight is as easy as drawing breath. This is in no way meant to diminish your unique achievement, Uncle Richie. Having said all this, we see our young hero running around town, frequenting every known ice cream parlor and candy store in Ridgewood and the neighboring towns. You name it, Jack's eating it. Now, as many of you know, we eat a very healthy diet in this house. The Dessert Nazi, who shall go nameless, can routinely be heard screaming "No Crap for You". It is anarchy here now. The residents are dazed and confused, wondering "What the heck has happened to my mother"? Who knows? The only question I really care about is "Has Jack gained any weight"? Fortunately, I can say he has, but sadly, only half a pound. Those of us trying to help are collectively exhausted by the effort. Jack is zipping around the house on a sugar buzz and burning off almost all of the calories he has consumed. This prompts Diane Davis and Traci Tummillo to switch from sugars to fats. Jack is invited to Traci's where he is given lasagna and cheesecake. He has a wonderful time in this all-female household, but quickly aligns himself with Traci's husband, Lud. We are all invited to the Davis'. Diane prepared a pot roast, yummy mashed potatoes, buttery biscuits, and steamed green beans. Jack eats a first serving and Diane prompts him to eat a little more. He reaches for the green beans, and in slow motion, I see Diane extend her hand. She deftly blocks Jack's path and pushes the potatoes toward him. Politely, he accepts the redirect. I have to turn my face to keep from laughing.
Into the mix we add moms who are willing to pick Jack up from school at lunch along with their own child and take him out for fast food. Yesterday, he went to Wendy's with Genny Allard and her son, Jack. Today it is Marie and Nick Tucci.
On Sunday, Jack was invited to the Giants game with Courtney Pfeiffer and Pat Lang. He decided to go, and had a great time. Of course, they took him out for lunch, and he got homemade potato chips with his meal. Pat and Courtney made sure that he brought the leftovers home, and he ate them Sunday night. He also got a Manning jersey, courtesy of Mrs. Lang, the big softy.
All of this means so much to Jack. He loves his daily adventures, and he always comes home with a smile and a fabulous story for me. I am incredibly grateful to all of you for loving Jack so well and so often.
Tuesday, October 3, 2006 7:43 PM CDT
From time to time, I have gotten an e-mail asking who Briana is and how she knows Jack. For anyone who reads Jack's guestbook, you will recognize her as the young woman who calls Jack "Squishy". Her notes to him are always heartfelt, always full of affection for him. They have known each other a long time. In fact, all of Jack's life. She is a college freshman this year, Jack a seventh grader. Each year our families have gone to see the holiday decorations at the Bronx Zoo. It has become a tradition for all of us to meet with Uncle Richie and his family, Aunt Mary and her family and Briana's family the day after Thanksgiving. The last two years we have not been able to get there, due in part to Jack's illness. The memories last, though, for all of us.
Briana was asked by her English professor to write about a person who has affected her life. She chose to write about Jack. I received her poem in my e-mail just before I left to meet Jack at The Cox Classic. I was already somewhat emotional, but her words touched such a chord, that I broke down in tears. I am ready now to share her poem.
JackStrong
By: Briana Pittari
Jack once rode on my back.
His skinny little arms would lock between mine
And he would stand so tall, so strong-
King of the Zoo…Crowned by his youth.
His smile warmed your heart.
It would touch the tips of your fingers,
Racing to reach the center square-
And fill you fully, joyfully, tranquilly.
And he never physically touched you.
His big eyes glanced at the gators,
Giggled at the monkeys, glamoured at the tigers-
And stared at me.
Stared at me, smiled at me, Completed me.
My soul would burn so bright in his innocent face,
And the company around was gayer, quicker, united.
It was him. We were looking at him.
The lights would blink bright,
The funnel cake sweet and warm-
Our breath would smoke the December night
As we would sneak through the back entrance of the mouse house door…
Jack is eleven, and I haven’t seen him in months.
They prepare him for battle-
Shave his head-
Admit him to a hospital bed.
The sky is a bit darker, God cries tears of pain.
Millions surround him, the invaders attack his body.
His scrawny bones may fail,
The spirit will triumphantly overcome.
JackStrong was born.
Jack is twelve, and the war wages on.
I haven’t seen him in two years but still I dream…
He leads us in the sand, thousands following, friends, family, strangers alike.
He laughs and smiles, and when he falls, we pick him up.
He stands on our shoulders-
Tall, Proud, JackStrong.
It is not a saying. It is a way of life.
After years of struggle, hopefully now, the war ends for good.
Is it not the greatest feeling when a boy steals your heart?
Not to whisk you away or kiss your neck or reveal love inside you-
But a mere boy of twelve comes into your life, steals your soul-
And you are left inspired, awakened, renewed.
I wish I had something to add, but I don't. Thank you, Briana, for honoring Jack.
Saturday, September 30, 2006 6:45 PM CDT
It has been a busy few days for Jack. On Wednesday, I took him out of school at noon for a visit at Hackensack University Medical Center with several of his buddies from the NY Yankees. He got to meet Chien-Ming Wang for the first time. Whenever he is at the stadium, Wang is in the bullpen when Jack is in the dugout. So, this was pretty exciting. Wang was pitching on Wednesday, so I was kind of surprised to see him there. He didn't say very much; I'm not sure how much English he speaks, but Jack was happy just to sit with him and get an autograph. I wanted to get a photo of the two of them, but it was a madhouse. David Jurist took Wang outside, and I was supposed to bring Jack out, but it all happened so quickly and I missed the opportunity. I felt bad, Jack was unfazed.
Deirdre Imus and Ray Negron were there talking about Ray's book, The Boy of Steel. Jack read a page from the book to an audience of children from the hospital, and Deirdre read the rest. It was televised on MSNBC, and Rich taped it, but I haven't had time to watch it.
Jack got to visit again with Robinson Cano and Ron Villone, and met several other players that I never saw before. Way too much to keep up with, but Jack knew them all and was happy to be introduced.
Here's my favorite part of the day. I got to reconnect with Rob Narvaez from Spalding. We met last April, two days before Jack was admitted to the hospital for his transplant. Jack was on the field at Yankee Stadium with Robinson Cano when he received a humanitarian award from Spalding. Rob, along with Spalding's CEO, Carl Ferraro, gave Jack all kinds of baseball gear from the company. In return, Jack gave them each a JackStrong band, which they politely put on. Five months later, Rob rolls up his shirtsleeve to reveal his JackStrong, and he tells Jack that he has never taken it off. Jack responds by giving Rob his brightest smile of the day. In Jack's journey from diagnosis to recovery, we are lucky to meet so many people who are touched by his story. It keeps Jack strong. You can view pictures from the day at www. theboyofsteel.com/newsletters/9_28_06.pdf.
Yesterday, Jack went back to the hospital for another non-medical visit. These are my favorite kind. Frank Callaghan and Tony Barbera coach a sixth and seventh grade girl's softball team in Ridgewood. Recently, the girls competed in and won a tournament and received $400 in prize money. The girls wanted to donate to a pediatric cancer program, and honored Jack by giving the money to Tomorrows Children. Kathy Ambrose spoke about the things their donation will do for the children, showed a video of former patients and gave the girls a tour of the clinic. Jack, being outnumbered by this vocal group of girls, stayed a safe distance from all the activity. I spent most of my time, like I always do, watching him. On this day I did not get caught once. I'm getting good.
Wednesday, September 27, 2006 2:55 AM CDT
I am awake, therefore I write. The early hours of the morning are hardest when I cannot sleep. It is best to get up and get something accomplished.
Jack spiked fever again late last week. His third one since returning to school. His fevers never get above 102.5, so I try not to give him any Tylenol. It is best, I think, to let the fever burn off the infection. Already, his rhythm at school is off. When he is sick for a couple of days, he gets behind in his work, and when he returns, his classmates are taking tests in what seems like every subject, which he is unprepared for. So he tries to make up his work, sit for tests, and complete standardized tests. He feels tired, out of sorts and unable to keep up with the demands of his day. He told me today that he believes the whole world needs a day off every now and again. He has a point. All the while, he cannnot gain weight.
I had to call in the big guns, and have my extraordinary friend, Barbara Del Vecchio, help me with this. Which, of course she did, seamlessly. Barbara has reached out to the 257 families on our help circle list to fatten up Jack. Today, Rich's softball buddy, Bob Salerno, will pick Jack up from physical therapy and take him for ice cream. Lisa Paterson will do the same after school on Friday. Genny Allard wanted to take him for fast food, also known as fat food, for lunch today, but he is scheduled to be at the hospital. Seven of his Yankee buddies are visiting the sick kids, and Jack has been invited to join them. Both Pat Lang and Rose Boniello have offered him tickets to tonight's game, but he feels that going will put him even further behind in his work. This makes me feel awful, but I have to let him choose what will work for him.
Anyone who has suggestions for weight gain beyond milkshakes and nutritional supplements should e-mail me. I am thinking of having Jack live with Uncle Richie, because he seems to have figured out how to do it. Lots of my friends have said the same, so if this doesn't work, we will be rotating Jack through your homes until he comes back a little heftier.
My mom is the friendliest person I know. My dad used to say that they named a restaurant after her. As luck would have it, she was eating lunch with my uncle at a table next to a young couple who were discussing the Yankees. Of course, my mom had to explain Jack's connection to Mariano. Turns out the man, whose name is Brendan Keefe, is a correspondent for CBS News, and gives his cell phone number to my mom to give to me. Talk about coincidence, he works with John Bolaris, the weatherman who interviewed Jack on the air at The Cox Classic. John came into the studio Monday night and talked about Jack. He told Brendan, and the rest of the news staff that he met a kid that was going to be president someday. I'm not sure when Brendan made the connection between his lunch and this kid, but ultimately he realized that he had met Jack's grandmother. He told me that he had lost two brothers, both in their forties to cancer, and his dad all in under four years. He offered to help Jack in any way he could. If Jack wanted to visit the studios, he and John would give him the grand tour. If he wanted his story told, he would help make that happen. Jack responded by saying that he is too far behind in his schoolwork, and couldn't even consider that now. My mom wants to know if she can go on the tour without him. Nice try, Nunu.
Friday, September 22, 2006 6:31 AM CDT
We did not film Jack's speech on Monday at The Cox Classic. So many people have asked if we planned to link this speech with the others on his website. As of right now, I am not sure that will happen. So, I've decided to import his talk from Word to be read here. It is a tear-jerker, and when I went up to the podium to help him get ready, he said "Why are you crying, I haven't even started yet?". I hope you fare better than I did.
"Today is the third Monday in September. It is the day each year that Steve’s friends celebrate his life by carrying on the tradition of The Cox Classic. Last year I became a member of this family, and consider myself lucky to be a friend of Steve’s. But, the third Monday in September is a significant day in my life for another reason. On September 20, 2004, while the many people who make this outing a success were playing golf, I was playing football with my friends after school. Going out for a pass, I jumped up into the air and lost my balance. When I hit the ground I knew that my arm was broken. It was to be the beginning of my cancer diagnosis. The doctors in the emergency room were able to see the many tumors in my chest when the x-rays of my upper arm were taken. I had no symptoms, and had no idea my body was under attack.
The third Monday in September my life changed for good, and I mean that in a couple of ways. Yes, things would not and, in fact, have not been the same since. My life will never resemble those days again, but that is okay. There have been some very good things that have happened to me because of my illness. I have met, and have been treated by the most amazing medical team. The town where I live, Ridgewood, NJ, has provided unending support for me and my family throughout these past 2 years. There have been countless meals including lasagnas that seemed to multiply while they were settling into the cold of my mom’s freezer. There is so much to describe, but I want to go back to that third Monday in September.
Fifty-two weeks ago today, I was standing at this podium ready to tell the story of what I hoped would be the beginning and the end of my cancer experience. Other than my family, the only person I knew was Lynn Hoffman. Today, she is more like family. As we were approaching the entrance to the golf course that day, I could feel myself getting nervous. That’s when we met Julie Rygiel. My mom started to explain to her who we were and why we were here, but Julie knew all that already. She had the kindest smile, and she told me that I could focus on her if I got nervous while I was speaking. I relaxed right away. She kept her word, and I looked up at her for strength whenever I felt anxious. I made many new friends that day, and I see some of you here now.
So, I thought I was done. On November 10, 2005, I had my PET and CAT scans to see if my cancer was in remission. Those scans happen every three months, and for this set we got good news. It would not last, though. On February 21, my cancer came back. This time there was a tumor in my abdomen. My mom got the call from my oncologist, Dr. Halpern, as we were coming in the door from the hospital. She told me that she understood more by what Dr. Halpern didn’t say than by what he did. His voice was filled with concern and he had a hard time speaking. She knew it was serious because I had already gotten six rounds of chemotherapy and radiation to my chest and spleen, more than Dr. Halpern originally thought I would need to keep me cancer-free. The protocol was designed to make sure that I never relapsed. The fact that it happened at all, and then happened so quickly was not good. It means that my cancer is aggressive. My mom waited two days before telling me the news. Hearing it for the second time was a million times worse than the first. This time I did not have ignorance on my side. I knew exactly what I was facing, and it felt awful.
My mom is a research nut, and I mean that in a good way. Dr. Halpern once told her that she takes five times the energy of any of his other patients. I remember one day she asked him if he was calling her a pain in the “you know what”. He replied by telling her that he was calling her when he got sick. That was okay by her. So when I relapsed, she launched into mega-research mode and peppered Dr. Halpern with a gazillion questions. He dealt with her as only he can, by being well informed and consulting with his colleagues at Tomorrows Children, Memorial Sloan-Kettering and Brown. At the same time, friends recommended that we get a second opinion from The Cancer Institute of New Jersey. All four medical teams unanimously recommended that I have an autologous peripheral blood stem cell transplant. Try saying that 3 times fast!
On March 1, I had a biopsy to confirm that the tumor was in fact recurrent Hodgkin’s lymphoma. My mom was praying that the biopsy would come back negative, but that didn’t happen. As soon as I recovered from the surgery I was readmitted to the hospital for 5 days for my first round of salvage chemotherapy. It was extremely hard to bear, and some days I was sick to my stomach 14 times a day. The worst part was that my body was still weak from the biopsy, plus I knew that I had to be admitted for the same chemo in another two weeks. It seemed impossible to do. My mom worked with my pediatrician, Dr. Stoller, to learn everything she could about anti-nausea medication. Based on our discussions, Dr. Halpern made some promising changes. My next round of chemotherapy was not nearly as bad as the first, and there were even a couple of days when I did not throw up at all.
Finally, I had arrived at the point where I was ready to have my stem cells harvested. This was a pretty big deal, and my whole family jammed themselves into the tiny apheresis lab to watch the process happen. My mom and dad, sister and brother, aunt and uncle and grandma were all there to show their support. They were remarkably loud, and I remember thinking that what I really needed was some peace and quiet. I decided to close my eyes and pretend that I was sleeping to see if that would settle them down, but nothing subtle works with my family. Finally, my mom invited everyone to enjoy the comforts of the waiting area outside the lab.
Once my stem cells were collected and preserved, I could have the 6 days of high-dose chemotherapy designed to wipe out my cancer for good. It is the elephant gun of oncology treatment, and the very best chance for my care to be successful. But, it is also highly toxic, and made me pretty sick. My skin turned black, I lost the lining of my mouth and gastrointestinal tract, my hair was already gone, and I would begin the process of losing the skin on my hands and feet and all of my fingernails and toenails. That month in the hospital was almost more than I could bear. But, here’s where it gets good again. I got so many hits on my website from family and friends, including members of The Cox Classic family. When I was feeling down, my mom would read entries to me from Mike Marion, Donna Cox, Dave Chmiel, Gene Innocenti, Henry Cox and so many more. Every single one of those notes lifted my spirits, and I am grateful to all of you for thinking of me.
As often as they could, David and Alice Jurist came up to visit. David spends a lot of time teasing my mom, and no matter how awful I was feeling, he could always make me smile. Then there was the annual Radiothon that Don Imus does for Tomorrows Children, The Imus Ranch and The CJ Foundation for SIDS. It began on Wednesday, May 3rd, the last day of my high dose chemotherapy and ended on the day of my transplant, Cinco de Mayo. During the event, Deirdre Imus came to visit with Mike Francesca and Chris Russo, and on another day stopped by with her son, Wyatt. Those visits helped to break up the long hours of being confined to my hospital bed.
The high dose chemo was designed to eradicate the cancer from my body, and in the process wiped out my immune system. By May 5th, I had no white blood cells to fight infection, and my red blood cells and platelet levels were dangerously low. Over the course of the next weeks, I would require several red blood cell and platelet transfusions. It would take about a week to ten days for my transplanted stem cells to find their way home to my bone marrow. By May 10th, my level was .3, and my mom thought I would get an early break. But then my levels dropped off again, and it was several tense days while we waited for those stem cells to cross the bone into my marrow. Each day, a nurse would draw my blood at 5 AM, and my mom or dad would be at the nurses’ station by 6AM waiting for a verbal report. This scene repeated itself for many long days without any change, and my mom and dad were frantic. Then, on Mother’s Day, my white blood cell count spiked to .8. My mom says it was the best Mother’s Day gift she ever got.
After the transplant, I started to feel a little better. But then the high fevers started. The first one was 104 degrees and my mom and dad freaked out. At their worst I ran fever of almost 106 degrees. Once Dr. Boscamp, my infectious disease doc, figured out that I had an infection in my port, he prescribed antibiotics and my fevers stopped. Finally, I was free to come home from the hospital. It was my fourth hospital stay in less than three months, and I was there for 25 consecutive days. When we were discharged, my mom decided to wrap me up and take me out into the warm May weather while my dad got the car from the parking lot. I drew those first breaths of fresh spring air into my lungs with pure joy.
As soon as my white blood cell, platelet and red blood cell counts were high enough, I began 3 weeks of daily radiation to my abdomen. On June 29, I had the surgery to remove my med-comp port, which was used for my chemotherapy and transfusions. Today I am 136 days post-transplant and feeling stronger each day. Next month I will have the PET and CAT scans that will tell us if my cancer is still in remission.
As I said earlier, having cancer has changed my life, and at times it has been a hard road for my family. But, I know this. It would be so much worse without all of you. I am grateful for the many things that the Tomorrows Children’s Fund has been able to do for me and for all the sick children, some with the help of this event. I am grateful for having Mike Marion in my life. My mom says that he is as close as I’ll ever get to having a fairy godmother. It seems like every other week I get a package or a letter, a phone call from a famous person, or tickets to a sporting event in the mail. Mike’s name is never on any of it, but that doesn’t fool me or my clever mom one bit. My mom says that Mike is shameless in his determination to keep me feeling positive. In so many ways, on so many levels, he is a success.
Then I think about David and Alice Jurist. Back in December, David asked me to speak at the dedication to the new women’s and children’s hospital at Hackensack University Medical Center. He has been a constant in my life ever since. I got to attend the retirement of Mark Messier’s number at Madison Square Garden in January, and even be out on the ice with him for a tribute from Tomorrows Children. Although David would never admit it, I know that it was David and Alice who made that possible. It was the thrill of a lifetime for me to stand at Mark’s side for a part of those festivities.
This list would not be complete without Lynn Hoffman, my TCI “angel with an attitude”. She is the person who introduced me to the Cox Classic, and it’s because of her that I am here today. Whenever I am in the clinic for blood work or some test, I head straight to her office. She is the person I reach out to when things get really bad. I remember the day I was told I would need my first blood transfusion. I was so frightened and angry, and I took it all out on my mom. She just stood there and let me scream and get out my rage. Acting that way made me feel awful, and I took off for the one person I knew could help me through it. I ran straight into Lynn’s office and into her open arms. I cried, she cried and in the end she stayed with me for the worst of it. Then, of course, there is my road trip with my sports heroes, The NY Yankees. It was Lynn who chose me for that trip, and I will never, ever stop being grateful to her for giving me the greatest adventure of my life.
Sometimes it is difficult to think about my disease, and I wonder about what the future will hold. Being a part of The Cox Classic family helps to keep some of the worry away. When I feel sad or frightened, I think about all of my new friends, many of whom have come into my life through Tomorrows Children and The Cox Classic and I remember that I am not alone.
My mom talks a lot about her hopes for the years to come. She says that at one point she had lots of ideas about what life had in store for me. Now she thinks about just one thing. When I grow up, she doesn’t want me to be something specific like a teacher or a doctor. She simply wants me to grow up to be a cancer survivor. She wants me to be 80 years old and still attending The Cox Classic. It is the third Monday in September, and there is no place I would rather be. Thank you for having me here again today."
Jack got a thunderous standing ovation. When he read the part about being eighty and still attending The Classic, the audience cheered, and Jack had a hard time getting out his closing sentences. What a moment, what a day.
Tuesday, September 19, 2006 6:26 AM CDT
The boys and I had a great time at the Yankee game. We did get to sit in the dugout, but the players did not take batting practice, because it was a double-header. I was disappointed that Brendan and Travis could not see all of the players up close. But Jack has friends at the stadium, and Byron Hunter, the man who wrote the article about Jack for LatinoSports.com, brought us all back to the wind tunnel outside the clubhouse. I have such fond memories of that dank and ugly space from my visit in April. The clubhouse was closed to press, so Byron couldn't go inside to get Mariano for us, so we waited outside and saw players as they came and went. The boys got autographs from Robinson Cano, Scott Proctor, Kyle Farnsworth and Alex Rodriguez. Then they got to see some of the players for the Red Sox, and even got an autograph from David Ortiz. Jack looked at Big Papi with those wide eyes and asked if it was hard for him when the fans booed. He just said you get used to it after awhile. When it happened in the stands and people around us booed, I absolutely wouldn't let Brendan or Travis join in. Not on my watch.
Byron and I talked about the last time Jack was in the clubhouse, right before his transplant. He said that over the course of the years, he has seen many kids visit with the players, but that it is different with Jack. As he watched Jack with Mariano, the players were actually waiting in line to speak with Jack. Jeter, Damon and Cano all anxious to catch up and find out how Jack was doing. I asked Jack about this, and he said he was too excited to notice. In his speech last week about Jack, Ray Negron told the audience that Jack has more joo-joo with Mariano than he does. I watch Jack come to life as people say these kind words, and I know that he is healed by these connections he has made. Unlucky situation, lucky happenings.
Yesterday was the 17th annual Cox Classic. It is a big, spirited event that honors the life of Steve Cox, a young man who died at the age of 32 of a bone cancer. Over the years, they have raised more than 6 million dollars for charity. Rich golfed with Kate, Alex and Jack. My brothers, Jimmy and Rich, golfed with Mike Hansen and Bill Kennedy behind them. Kate got a prize for the longest drive by a woman, and Alex and Jack said they played a good game and totally loved driving the golf cart. I am happy for Rich; he loves this sport, and playing with his kids is such a thrill.
Jack was chosen this year to hit the ceremonial first shot in the Imus Teed Off Challenge, and got up to the tee like an old hand. I think he hit the ball 112 yards, and people commented that he might want to hit for some of the celebrities. The challengers included Phil Simms, Mike Lupica, Chris Russo and Joe Benigno.
Mike Marion, along with the foundation, honored Jack with a hero's award, which was presented to him by the only other recipient of this award, Chris Fallon. It reads: "For exhibiting exceptional courage, poise and strength...For being a true inspiration to countless friends and supporters..." Chris was emotional as he talked about his battle and drew parallels to Jack's own fight. Jack was flush with pride as Chris told him that he saw himself in Jack, just twenty years earlier. I was reduced to tears.
After the presentation, Jack spoke about his illness, and what it means to be a "Friend of Steve's". He shared the ups and downs of this past year and thanked members of The Cox Classic family for walking this road with him.
Then, Jack got to be on CBS News with their weatherman, John Bolaris. I'm not sure what he was doing, but we got several calls saying that friends saw Jack on TV. I hope to get a tape to watch at home.
There was a drawing for prizes and Mike Hansen won two roundtrip tickets and promised to take my mom. My brothers and I heard it, and intend to make Mike keep his promise! The man sitting behind my mom, gave her his prize, and when my mom went to collect it, several people in line recognized her as Jack's grandmother. Many gave her their prize tickets which just plain made her cry. I am an emotional wreck today, but the outpouring of love for my son makes me strong. Time for a strong cup of coffee and a slow start to the day.
Saturday, September 16, 2006 4:01 PM CDT
Jack lasted all of two and a half days at school before he came down with a cold. On Monday, he came home with sniffles, sneezing and a runny nose. I kept him home with me on Tuesday, but he wanted to go back to school on Wednesday. Since I had to go to work, I didn't really fight him. After all, it was just a cold. When he came home on Wednesday, he was exhausted, and running a slight fever. He went to bed at 8:45 and slept until after 10 the next day. He had an appointment with his new pediatrician because of insurance issues, and it was easy to have him examine Jack at the same time. When we got there, Jack's fever spiked to 100.9, and he was extremely lethargic. Additionally, Jack weighed three pounds less than he did at the pediatric cardiologist's office on Tuesday. Because the doctor thought he might be dehydrated, he wanted me to take Jack to the ER at Valley, immediately. Oh, brother. We agreed instead, to call Dr. Halpern, who told me that he would be on call at the hospital all night. He and I decided that I would try to hydrate Jack at home, and keep in touch with him at the hospital if things changed. We spoke when Jack's fever hit 101.5, but he was wasn't worried because Jack was taking fluids and he was animated. Go, Jack.
On Friday, I took him in to the clinic to see Dr. Halpern for his monthly visit. By then, the fever was gone, and Jack was back to himself. Dr. Stoller reminded me yesterday that she was sick with one thing or another her first winter following chemotherapy. Dr. Halpern feels that Jack's immune system is ready to handle the challenges of being in school. The bigger question is, "Am I?". Stay tuned for the next installment of "How Can We Ravage Karen's Few Remaining Nerves Next?"
On Tuesday, Jack saw his pediatric cardiologist, Dr. Tozzi. He performed an EKG and an echocardiogram, which were both normal. This was the absolute highlight of my week. I was truly worried that Jack's chemotherapy drugs caused permanent damage to his heart. It was great to be wrong. Dr. Tozzi is concerned that Jack is sleeping too much and has no appetite. He wants Jack to walk for an hour each day to build up his endurance. How will I make this happen with his schedule and mine? Not to worry. I was telling this to my friend, Cathy Brienza, who immediately talked to her son and a couple of his friends. They are happy to walk with Jack a couple of times a week. God, I love my friends.
Okay, here's some good news. Last Thursday night, we took Jack out to a book signing for his Yankee buddy, Ray Negron. Ray has written a book called "The Boy of Steel". It is about a young Yankee fan, suffering with cancer, who gets to meet Robinson Cano, and experience a wonderful baseball adventure. The book is beautifully written and illustrated, and Ray has shared the galleys with Jack over the last few months. It was published last August. Anyway, at the book signing, Ray wanted to recognize significant people in his life, and honored Jack with a beautiful plaque. It reads " To Jack Szigety, in recognition of your courage faced during your time of adversity. You are an inspiration to us all." Jack was beaming as Ray talked about him to a crowd of several hundred people. Me, too. Here's my favorite part of this story. Ray is donating all of the proceeds of this book to cancer research, and Tomorrows Children will benefit as a result of his work.
Jack just came home from going to the Yankee game with Rich and Justine Del Vecchio. Lynn Hoffman, from Tomorrows Children, gave us the tickets. At the game, they met up with Jack's buddy, Steve Monahan, from CORE. Steve's seats were so good that Jack and Justine ended up watching the game with him and his daughter, Moe. Rich stayed up with the pigeons. Jack and I are headed back to the stadium tomorrow with Jack's buddy, Brendan Carroll, and Dr. Stoller's son, Travis. Rich has worked out field access with Jerry, Jack's buddy from Yankee security. Should be fun.
Saturday, September 9, 2006 1:06 PM CDT
It is a compelling story; I can finally see that. After two years of caring for Jack, even I am anxious to know what will happen next. Through this journey, Jack has made so many new and wonderful friends, and he has become such an integral part of so many peoples' lives. It has eased the sadness of these last couple of years. Anyway, when I don't write for awhile my e-mail inbox fills up with gentle queries and reminders. Or I see someone on the street, and I can tell that they want to ask, but are being respectful. Friends want to know, and I understand that now, because I want to know, too.
It has been an eventful couple of days. When last we met our oddly happy protagonist, he was headed into MSKCC to see Dr. Wolden so that she could review his recent set of scans. She was pleased to see that his abdomen, chest and spleen are all still free of cancer. These are the areas of Jack's body that she has irradiated, and it is a great comfort to all of us that his cancer has not recurred there. She was less pleased, but not greatly concerned that Jack's tonsils are lighting up on PET. I did not realize that she has a specialty in head and neck cancers, and has been called in to advise on cases like Jack's many times. She has seen this happen fairly routinely in pediatric Hodgkin's cases, especially following stem cell transplant. Rich and I were relieved, and so grateful that she is Jack's radiation oncologist. It could be rebound from the chemo, like Jack has experienced with his thymus on every scan since he went into remission in April,2005. It could be an infection, or the tonsils could be reacting to some contaminant entering his body. But, it could be recurrent Hodgkin's. So, she tells Jack that she wants to perform a laryngoscopy, and he freaks out. He tells her that he aready did that on Friday and he will get the video from Dr. Henick. She tells him that she wants to see for herself, and might even want a colleague who is an ENT to examine Jack. This puts him right over the edge. Dr. Wolden decides to see if we can get this over with in one fell swoop, and reaches out to see if Dr. Shah can examine Jack right then and there. In a matter of minutes, she makes this happen. Carol, her nurse, gives Jack a local anesthetic, and we head over to otolaryngology. As we are walking, Dr. Wolden tells Jack that Dr. Shah is a world-renowned physician and people wait months to see him. I find myself thinking, yet again, how lucky we have been in this unlucky situation.
Dr. Shah enters the room where we are waiting with an entourage of doctors who all want to see Jack. He gives Jack another local, and decides to manipulate Jack's tonsils manually. It is extremely painful, and Jack is on the verge of falling apart, but he keeps it all together. He is brave and strong in the face of whatever we throw at him. It takes me a long time to recover.
Dr. Shah is thoughtful in the questions he poses and the suggestions he makes. He is relieved to hear that Jack has had a sore throat, but not happy that the tonsils are not uniform in their presentation. When he examines Jack, he notes that the right tonsil is larger and more rigid than the left. It would be better if there was symmetry. He decides that we can safely wait another month to repeat Jack's scans, and possibly give his tonsils a chance to return to normal. We will reach a crossroads then. If the intensity of the brightness of the scans is the same or is diminshed, we can conclude that this is not cancer. If the scans light up more intensely, we will have decisions to make. The logic here is that cancer does not wax and wane. It gets progressively more intense. If we decide to take his tonsils out, Dr. Wolden is almost sure that the biopsy will be benign, but we cannot take a chance. I understand the direction she and Dr. Shah have decided on, and I am more relieved than I have been in days. My body shifts a notch down from high alert, but I am weary from worry. There is so much more to say, but I am tired. I will write as soon as I can.
Thursday, September 7, 2006 5:55 AM CDT
I have been unable to write. It is an emotional rather than a physical thing. On Friday, Rich and I took Jack to see Dr. Henick, the ENT that Dr. Halpern wanted to examine Jack. I think I went in there with the wrong attitude. I really did expect him to tell us definitively that Jack had tonsillitis. That certainly did not happen, and on a number of occasions he said that he could not rule out recurrent Hodgkin's. I took this about as well as you might expect. In an effort to diagnose Jack, he wanted to perform a laryngoscopy, under local anesthesia. I took this equally well. Jack had this procedure done as a 5 month old, and I remember it vividly. Jack got nervous, I tried to rein myself in and ultimately was able to explain to Jack why this was necessary. It was exhausting. The procedure involves threading a small scope through Jack's nose and down into his throat. While this is happening, a camera records everything. It was amazing, and Jack was anxious to watch the video when Dr. Henick was finished. We were all relieved to hear the doctor say that there wasn't anything there that wasn't supposed to be there.
So what do we do about Jack's tonsils? Here's the plan. Dr. Henick put Jack on a course of antibiotics for two weeks in the hope that he has a bacterial infection. If it resolves then we can assume it was tonsillitis. Jack has to repeat his PET/CT scans in six weeks, and Dr. Halpern does not want to see any activity on the PET. If his tonsils are lighting up then, Dr. Halpern wants to have them removed. I absolutely hate the thought of putting Jack through another surgical procedure. Here's where I thank God for my friends.
On Saturday, I spent some time with my medical friends, Pat Roth and Gary Louizides. On Thursday, Rich picked up the reports on Jack's scans, and I was having trouble reading them. Gary and Pat helped me decipher the language. They also provided a sounding board for my fears. In the end, they eased my mind, and I had a sense of what I needed to do. I will get a second opinion today from an ENT that they both have a professional relationship with. I feel better.
This morning we are headed into Memorial Sloan-Kettering to see Dr. Wolden. This is Jack's 6 week check-up after completing radiation (we are a little late, due to insurance snafus). I sent ahead all of Jack's scans so that Dr. Wolden would have a chance to review them before we arrived today. I will ask her advice on his tonsils as well.
On a brighter note, Jack is back to school, and so happy to see all of his friends. He's not so crazy about all of the work, but that's to be expected.
Thursday, August 31, 2006 6:21 AM CDT
My mind is focused on the beginning of school. I have started to worry about exposing Jack to 600 kids each day. His immune system is still so new, and virtually untested. Even now, I run interference for him, making sure that the friends he sees are well. Tuesday, all bets are off. When I actually began to process this information, I got a little panicky. There was an article in The Ridgewood News regarding an outbreak of avian flu in town. The school doctor is concerned that we are not adequately prepared. Now, I'm really out of my mind. Yesterday, Tony Orsini, Jack's principal, called with the same worries. Joyce Fogg, our school nurse, is not returning for health reasons, and a replacement will not arrive for another 4 weeks. I am sad to see Joyce go. She knows Jack so well, and it was a comfort to know he would be in her care during school hours. Tony suggested that I touch base with Jack's physicians, so I called the hospital yesterday. I spoke to Noreen, one of his nurses, and she said that once we pass Day 100, Jack is in the clear. I felt relieved, temporarily, but am feeling nervous again today. The only cure is to call back and speak with Dr. Halpern, or Carly, his other Advance Practice Nurse. They will all understand. They are used to me by now.
Here's the thing. Jack has the immune system of a newborn. The high dose chemotherapy wiped out his marrow completely. He had chicken pox as a four-year old. It doesn't matter. His immunity to this disease is gone. The immunizations he received as a baby are rendered useless by his oncology treatments. In so many ways, I feel that he is without defense. In my mind I hear the music from those superhero cartoons. Time for Mommy Power.
Now here's another thing that makes me smile. Jack has so many people in that building that love him, and will be watching out for him when he is in school. I almost don't have to worry. In my mind, where so many peculiar things live, I see his teachers, and the staff popping their heads out of classrooms and offices to check on him. I hope they are more discreet than I've been, but I doubt it. I see his Latin teacher, Magistra Carroll, putting herself between him and a sneezing student. Laugh all you like, but I've seen her do it, and no one messes with Magistra. Then there's Pat Lang in the office. She's Jack's personal BF angel, composed in equal parts of softness and steel. It is a wicked combination, and I absolutely will rest easier knowing she is near to Jack. So, I am trying to relax, trying to tell myself that it is time to let him go. It is time for him to resume his life, and me mine. Transitions can be so tough.
Saturday, August 26, 2006 3:43 AM CDT
I cannot sleep. If I had a nickel for every time I have said that in these last two years, I would be jingling by now. There's a thought. Yesterday was Jack's 12th birthday, and Jack began the day with a celebration, courtesy of Barbara Del Vecchio and her daughters, Justine and Marissa. Justine baked brownies, and brought Jack one with a candle in it. Marissa used her considerable art skills to make him a card, and Jack found a place of honor for it on our refrigerator. So, at 9 AM, we sang Happy Birthday for the first time, and all made a birthday wish for Jack. I hope God hears our prayers.
Jack and I spoke during the day about his last two birthdays and Jack said that he hopes 12 will be better than 10 and 11. Gotta be, I told him, and I mean it. For someone so young, he has endured so much. Always with his head held high, and his own sense of grace. I am so proud of him, so proud to be his mom. I am patiently waiting for the time in my life where those thoughts don't come to me so often. I am waiting for my life to be uneventful again, and I know when it happens this time I will appreciate it more, recognize it for the gift it is. Jack's illness has taught me so much about gifts that went unnoticed. I am not so naive anymore.
Jack wanted very much to spend his birthday with crazy Uncle Richie, Aunt Jojo, Mikey and Danny. But, Mikey and his dad had to work, leaving the quietest members of his family the only ones available to celebrate. That worked for me, as Uncle Richie can be wearing, but Jack really couldn't give up his cousin Mikey. So we will wait until Sunday, and take Jack up to Dave and Buster's with his cousins.
Jack's other favorite spot is the TGI Friday's in Ramsey. He likes the food there, but he likes the restaurant manager, Bob Dandeneau, even more. We took Jack there for his tenth birthday, and our meal was slow in coming. Bob came over to the table, apologized to Jack, and in the process made a new friend. I told Bob last night that meeting him was the last good thing to happen to Jack in the summmer of 2004. It would be less than a month later that Jack was diagnosed. Our visit was bittersweet because Bob leaves Ramsey in less than a week to head up a new restaurant in Charlotte, NC. Jack never goes to the restaurant unless Bob is there, and I'm not sure what that will mean in the future. Another unknown.
Jack's celebration was terrific, because we invited along his friend, Connor Kim, and Connor's parents, Mary and Thomas. The entire waitstaff came out to sing Happy Birthday, and Bob gave Jack a Ramsey TGIF cap. Jack politely placed it on his head, over his ever-present Yankees cap. Rich got a picture of Jack and Bob before we all said goodbye.
Last Wednesday, the night before Jack's scans, we got to meet representatives from the Make-A-Wish organization. Tomorrow's Children did all the paperwork so Jack could apply to have a wish granted. We got a letter about a month ago, saying it had been approved, and asking Jack to think about what he would like to have. His options fell into four categories- something he would like to own, a place he would like to go, a person he would like to meet, or a job he would like to have for a day. Jack quickly got out four pieces of paper, and started brainstorming. It is a big responsibility, and Jack wanted to choose wisely. The letter was interesting. On several occasions we were informed that this wish had to come from Jack. It could not be our wish "in disguise". Furthermore, he could not ask for money for college or something like an in-ground pool or a motorized vehicle. Huh. At the end of much writing, thinking, talking, and research on the Internet, here's what he narrowed his list down to. He would like to visit the resort, Atlantis, in Paradise Island, or meet Tiger Woods, get a lesson and play a round of golf, and finally the most ambitious is to own a luxury box at Yankee Stadium. Aim high, Jack, is what his Uncle Jimmy has taught him to do. Well, The MAW volunteers nodded as he talked about his first two, and sputtered and stammered over the last. Jack was quick to put them at ease, to explain that he was just dreaming. Gary Moran called yesterday to wish Jack a Happy Birthday and to say that his wish had been approved. It was a wonderful birthday gift, and I found myself hoping that Jack would get all of his birthday wishes granted this year. Jack has some time and is vacillating a little on what he really wants. I am grateful to Gary and his colleague, Frank, for taking the time to come meet with Jack and to let him dream for just a while.
I am tired, and am going to see if I can sleep.
Thursday, August 24, 2006 9:45 AM CDT
Even I'm annoyed that it has taken me so long to write. I know how many people are anxious to hear about Jack's lunch with Mariano and his family, but I haven't been feeling so great. Blah, blah, blah, get to the details. Here they are. Both Jack and Rich said that Mariano made them feel like family. Mariano noticed that Jack is thin, and made him promise to eat everything on his plate. Jack did just that, and I'm hoping in this way we can stretch his stomach just a bit each day. Uncle Richie said it worked flawlessly for him, so I have every confidence. Back to Mariano. Jack got to meet his wife, Clara, and his two oldest sons, who are close in age to Jack. They talked about baseball, and Jack asked the boys if their dad pitched to them, and they said he had. Jack thought it must be amazing to be on the receiving end of Mariano's pitching arm.
Then Jack asked about what it was like playing baseball in Panama as a young boy. He told Jack that he used empty milk cartons and rags as a glove. Jack wanted to know if Mariano was going to go back to Panama when he retired, and he said he was. I could tell that that was not what Jack wanted to hear. They talked about soccer, and Jack told Mariano he plays for a club team, and knew that Mariano played as a young boy. Mariano encouraged him to stay with it in an effort to build back his endurance, and I was glad to have his support.
Rich told me that Mariano focused his attention on Jack the entire time they were together, asking about his illness and recovery. I think the nicest thing I can say about him is that Rich told me he was as kind to Jack as Mark Messier has been. That's saying a lot. I am intrigued by these men who are such fierce competitors in their sport, yet have a soft spot for children. I know, without hesitation, that both of them have helped Jack get well. After all chemotherapy can only go so far. Jack is blessed to have both medical and non-medical healing.
The rest of their time in Boston was wonderful. Mike Marion put Rich in touch with some folks at Fenway that gave Jack the royal treatment. He got to tour the stadium, touch the Green Monster, and visit with the players on the field. Derek Jeter, Robinson Cano and Melky Cabrera all recognized him immediately, and asked when he was coming back to Yankee Stadium. Not soon enough, I'm sure. He even got to meet Mr. October, Reggie Jackson. I know that he is Dave Tashian's (Jack's guidance counselor) favorite Yankee of all time, and I asked Jack if he got him a signed ball. But, Reggie said he would only sign one per child. Sorry, Dave.
I want to write more about our meeting last Wednesday night with the Make-A-Wish volunteers, Gary Moran and Frank Gonzalez, but Jack has to be at physical therapy.
Sunday, August 20, 2006 10:43 AM CDT
Kate and I are down at the beach visiting with Kelly Coakley's family. We are having the time of our lives, enjoying the ocean, the pool, and the kids. But, I miss Jack. He came down with us on Thursday night, and Rich picked him up yesterday morning to head up to Fenway. Jack really wanted to come down to the beach, and Rich was willing to add another 3 hours of driving to their trip by coming down to get him. It was great for Jack to be here, and generous of Rich to encourage it.
I spoke to Jack last night on the phone and he sounded so deflated. The trip took forever, and he had still not heard from Mariano. Rich figured out Moe's schedule and thought that yesterday at 9:30 AM would be the perfect time to call. When Jack called he had to leave a message, and did not hear back from Mariano until late this morning. When I called this morning, I could hear the excitement in his voice, and knew without any exchange of words that they had made plans. So here's the deal. Jack has to call Mariano at 12:30 to confirm, but they are scheduled to meet for lunch at The Cheesecake Factory at 1 PM. Jack was completely jazzed as he was giving me the details. It is contagious - I feel the same way.
Back to being at the beach. The weather has been glorious, but the company has been better. This is, without reservation, the best antidote to last week's events. Each time Jack has scans, the anxiety begins about a week before they are scheduled. I start to feel the worry building until the day before when I have to get Jack ready. Things top out then, until it is all over the next day. Jack cannot be physically active, so that muscle activity is not confused with rapidly growing cells. His last meal of the day cannot include any carbohydrates, just protein and fat. So Jack feasts on a meal of steak, bacon and cheese. Seems like a recipe for a heart attack, but then I remind myself that it is only one meal. He must have three tall glasses of water before bed, and then again in the morning. The day of the scans he cannot eat. Right before he leaves, he must take a muscle relaxant, so that his body is still while he is being scanned. By the time we leave I am one taut jangle of nerves. Jack is blissfully doped up on meds, and I am happy that he cannot tell I am so anxious.
Back to being at the beach, part two. Kelly's parents have a beautiful home across the street from the beach. When we pulled up at 10 o'clock Thursday night, Jack said, "I hope it is that pretty, big one". It was. Kate, Jack and I settled into two bedrooms on the third floor, with an expansive sitting room in between. Jack's whole body was one big giggle as I tucked him into bed. Kate was trying to keep herself in check, but she wasn't far behind him. They slept until late morning the next day, and are so relaxed here. I am beyond grateful to Kelly, Bebe and Mobebe for having us. All three of them act like having houseguests is a breeze. Yet, we have had three big meals each day (Kelly and I can vouch for this), run through countless towels and laundry, and are in and out of the pool all day long. Just writing about all this activity annoys me, never mind having it happen under my feet. But Bebe seems genuinely happy. Even if she gets sick of us today and politely asks us to go home, she is still my hero.
Dr. Halpern told us on Thursday that Jack is losing weight. Even Lynn Hoffman said that Jack felt bony after hugging him a couple of times. Bebe decided to make a homemade vegetable soup which Jack loved. So did Kelly, Kate and I, and after Jack had his fill we dipped into the pot. Bebe was watching. She and I came up with a strategy of milkshakes at 3 PM everyday to help fatten him up. I will start that when I return home.
Kate is out at the surf shop with Kelly and the girls, and I am headed down to the pool. It is so nice to take a break from Jack's illness, even if it is just for a lttle while.
Thursday, August 17, 2006 6:44 PM CDT
It was a long and tiring day, but we are home, and the news is mostly good. We got to the imaging center at 9:45 AM, and were on our way to see Dr. Halpern by 12 noon. Jack's appointment for his pulmonary function tests was at 1 PM, so we couldn't stay. To make a long story short, we didn't see D. Halpern until after 4:00 PM. I could tell, just from making eye contact, that the news was mixed. I could also tell that he wasn't very worried, so I relaxed and waited to hear what he had to say. The CT scan came up clean, which was awesome. It means that the radiologists did not pick up any abnormal growths. Pretty terrrific stuff. So, here's the but. The PET scan shows uptake in the neck, in the tonsils. It is in both tonsils, and the activity is fairly uniform. A tumor wouldn't present like that. Then when I told Dr. Halpern that Jack wakes up each day with an awful sore throat, I could see him relax visibly. Also, the tonsils are not a typical location for Hodgkin's, so Jack needs to see an ENT to help resolve this.
Jack did poorly on his pulmonary function tests, and needs to repeat them within the month. He also needs to see his pediatric cardiologist because he got so easily winded during the test. The question we are all asking is "How much did the high dose chemo affect his heart and lungs?".
With all of this accomplished, he will have another PET/CT in two months instead of the typical three.
I am headed to Bay Head and will write more next week.
Wednesday, August 16, 2006 8:05 PM CDT
I cannot quiet my mind, and I don't know what to do, so I have decided to write. Maybe it will help. Tomorrow is Jack's big day, and it is the only thing I can think about. My tutoring schedule was jam-packed today, and it prevented me from dwelling on Jack's PET/CT until I finished at 7:15 PM. Each of the kids I tutor has a special place in my heart and in my life. It makes my life richer and fuller, and I am so grateful to their parents for entrusting each one of these kids to me.
It took a while, but I realized well into the week that my friends were collectively trying to keep me busy. When it dawned on me that this was happening, it made me laugh. On Sunday, we were invited to the Kavanaugh's for dinner. It was a beautiful Sunday afternoon, perfect for a barbeque. Rich and I spent our time talking with Cheryl and Tom, and watching the kids play badminton. Kate had tons of AP Biology to do and left early with Rich, and the boys and I stayed behind to play word games. We were having lots of laughs until something went wrong between Jack and Alex, and Jack fell apart. I know that it had nothing to do with the game and everything to do with his scans this week. The strain is almost unmanageable, but the wait is just about over.
The Cohans called on Sunday to see if we could join them at the Paramus pool, but we were already booked. Jack and I were both disappointed, and asked for a raincheck. Tonight, in my e-mail, there was a message from Bobby, Bob and their kids saying they were praying for Jack. I cried when I read it because I know how much Jack means to them.
Also on Sunday, I got a call from my friend, Liz Louizides, saying that she wanted us to come for dinner on Monday. That sounded terrific, and then Liz and I made plans to have lunch as well. It was pretty much a repeat of the night before without any rough patches for Jack. Liz's husband, Gary, is a Nurse Practioner at Hackensack University Medical Center, working in the operating room. He talked at length with Kate about her internship at Columbia, and the work she is doing in the lab for Mehmet Oz. Then Kate shared with Liz the details of her trip to Japan, and I was happy just to listen.
I would like to write more, but I am tired now, and writing has helped take the edge off. I will write again tomorrow.
Friday, August 11, 2006 7:15 PM CDT
We are back from the beach, back from weaseling our way into another friend's family vacation. This time our destination was Ocean Beach and a visit with my friend Mary Lyons Kim's family. This place was a blast. Mary goes to the shore with her mom, brother, sister, and a friend, each taking a separate cottage, across the road or next door to each other. There were tons of kids to play with, enough to have a pick up game of wiffle ball or soccer, and even a shootout with cap guns. Jack was in his glory. So we spent our days swimming, boogie boarding and being with friends. It was fabulous. Mary's brother, John, and her husband, Thomas, took sailing lessons, and treated us to some time with them on the water. The day was dry and cool, perfect for sailing. We watched a young group of kids learning to sail, all negotiating their way around bouys, and following single file behind their teacher. We didn't crash into a single one of them, although we got good and close a couple of times. My guess is that an hour and a half of sailing lessons can only take you so far.
At night, the beach was lit up by streetlamps, and the kids could play well into the night. It was my favorite time of the day. On Wednesday, we made the dreaded trip to the boardwalk at Seaside Heights, thinking that the kids would scatter like bugs, and argue about what rides to go on. But that never happened. They moved like a pack, from one ride to another, with Mary's friend, Gail, joining them. Jack seemed to find his way to Gail's side on most of the rides, which I thought showed extremely good taste on his part. I watched Jack scurry to the very top of this hideous swinging pirate ship ride, only to see him settle in right next to Gail. As the ride accelerated, Jack moved closer to Gail, she reached over to put her arms around him, and by the end of the ride, he was just about in her lap. Sharp thinking, Jack. From my stationary vantage point on the ground, I was grateful to Gail for being so nurturing. Lucky me.
So, we spent lazy days at the beach, came together late in the day to plan and prepare dinner, and enjoyed the kids. It was a perfect few days. I found myself thinking that it doesn't require a trip to the south of France, or palatial surroundings to make a terrific vacation. It's really a pretty simple formula, one that our parents used over and over. Not because they were more clever in their thinking, but because they simply didn't have the resources to do otherwise. Funny how things work out.
So we are home, and Jack has resumed his quest for strength and endurance with his new and fabulous friend, Frank. At an early age, my mother taught me that it was impolite to stare, so I try as often as possible not to do it. Past results have been mixed, current trends not looking any better. So I find myself in the gym, craning to watch Jack workout with Frank. I know I shouldn't do this, but Jack is one massive smile with feet when he is with Frank, and I need to see this in a bad way. So, I ignore everything I have been told and watch them together for as long as I can get away with it. When Jack has had enough he gives me the face, and I sit down again to wait. Yesterday, Jack was tired after their work together and hit the couch for some rest. I did the same.
Mike Marion is still at it. This guy is like the hallmark of consistency. Yesterday in the mail, came two tickets to Fenway to see the Yankees play the Red Sox on August 20th. Mike has worked with some colleagues to get these tickets for Jack and Rich. He has sent along a Red Sox cap for Jack to wear over his Yankees hat. This is Mike at his best. He knows Jack never, ever takes off his Yankees gear, and wants him to be safe at Fenway. After all he's been through, Mike wants Jack to come home in one piece. It is a brilliant piece of diplomacy on Mike's part.
Now, Jack wants to see his buddy, Moe, when they are in Boston, so he calls Moe's wife, Clara, on her cell phone. She picks up and tells Jack that Mariano is driving, but he wants to speak with him quickly. They make tentative plans to meet for lunch on Sunday, and Jack gets off the phone all hopped up on baseball mania. God, I hope this works out. Jack absolutely loves this guy, and wants to spend more than 10 minutes talking to him. Very pushy kid.
As our summer of mooching on other people's vacations continues, I realize that Jack is supposed to go with me to visit my friend, Kelly Coakley's family in Bay Head next weekend. Of course, I still want to go, as I love spending time with Kelly's mom, Bebe, and her dad, Mobebe (great names, I know). Now, as nice as they are, they're a little overworked, what with Kelly and the girls visiting constantly, so they're not at the top of their game, mentally. I'm thinking of making a quick substitution with my daughter, Kate, and going anyway. By the time they figure out it's Kate and not Jack, I am hoping that she will grow on them, and we can stay. Stay tuned for details of "Can This Woman Get Any Whackier". If Kelly were writing she would say, "Absolutely".
Okay, the fun is over, and now it's time to pick up my life again, but I am grateful for having had a diversion. On Thursday, Jack will have the PET/CT scans that will tell us if his cancer is still in remission. I am beginning to unravel, actually that started a couple of days ago, but that's okay. Please pray for Jack, and for a successful outcome. I will write as quickly as I can.
Friday, August 4, 2006 6:00 AM CDT
It has been an action-packed week for Jack. Just the way he likes it. His trip to Cooperstown was amazing, largely because he got to spend time with his friends from home. Funny how that works. You drive 4 hours from Ridgewood to The Baseball Hall of Fame, and the best part isn’t the exhibits or these amazing athletes, it’s hangin’ with your buds. It seems that things haven’t changed very much since I was a kid. Anyway, the boys invited Jack to sit in the dugout with him to watch one of their first games. Jack called to tell me beforehand, and I could easily sense his excitement. For me, these are the best moments. Seeing Jack so happy is my favorite thing. The game went really well and Ridgewood won. Jack called to tell me, and to let me know that each of the boys signed the winning ball, and gave it to him. It is upstairs in his room sitting right next to his 1999 World Series ball signed by his favorite Yankee and Series MVP, Mariano Rivera, or as my mom likes to call him “Mario Riviera”. Panamanian, Mom, not Italian!
The boys went to The Hall together, and invited Jack and Rich to a team bbq. Jack was in his glory. At some point, Rich and Jack met up with Ray and Kengo Kawahara for dinner. Meanwhile, back at the ranch, I was experiencing some major symptoms of withdrawal. It occurred to me at some point that I was feeling nauseous and out of sorts, and it took some time before I figured out exactly what it was I was experiencing. These last two years, Jack has been a constant in my life. Without realizing it, we have become dependent on each other. That will right itself in September when he returns to school.
While Rich and Jack were at The Hall, they saw Yogi Berra signing autographs. Jack asked if he remembered the picture he took with Yogi and George in Steinbrenner’s office. He looked closely at Jack, smiled, and said he did. I’m not so sure.
Next up was a visit with Mike Marion at Fiddler’s Elbow. Jack absolutely loves Mike, and driving 50 miles to see him was easy. Jack has given a lot of thought as to whether or not he wants to speak at The Cox Classic again this year. Writing a speech is time-consuming, and he is more nervous this year about speaking in front of hundreds of people. But ultimately, he decided he wants to do it, to make the effort for Mike. Jack was rewarded with one of Mike’s big smiles when Jack gave him his answer.
At lunch we met two business associates of Mike’s, Glenn and Ari, who attended The Cox Classic last year and heard Jack speak. They are part of a public relations firm, and want to help Mike spread the word about this wonderful event. To that end, they brought with them a sports writer for The Star Ledger, who spoke with Jack. I am not sure whether he is planning to write something. As events unfold, I will have more details.
So the week is shaping up really well for Jack. He is active, happy and engaged. Yesterday, we made our first visit to CORE, a facility in Ridgewood geared toward helping athletes and ordinary folks improve performance and increase strength and endurance. A couple of months ago, Frank Giannantonio, one of the owners, offered to help Jack get his strength back when he was ready. Frank is doing this for Jack at his own expense, and Jack is the envy of his 14 year-old brother and many of his friends. I sat in the office and visited with Lucille Cigolini, Kate and Alex’s seventh-grade English teacher, as Jack worked with Frank. I tried to be discrete, and casually watch Jack through the office window, but it was impossible to do both. Jack had the most wonderful time and asked Frank if he could come everyday. Frank said that three times a week was more than enough. When he was done, Jack had a chance to meet Steve, Frank’s partner. Frank explained that Steve was the world’s biggest Yankee fan, and would love to talk baseball with Jack. Although I think Jack owns that title, Frank had a point, and it was fun for me to listen to them both speak so passionately about Mariano Rivera. I am grateful to Frank and Steve for giving Jack this opportunity. It is wonderful to see Jack focus on regaining his strength, and so little on his battle with cancer. Time and time again the people in this community have shown Jack how much they care. It means so much to me, Rich, Kate and Alex. It helps all of us endure.
Sunday, July 30, 2006 12:39 AM CDT
Rich and Jack took off early this morning for Cooperstown and The Baseball Hall of Fame. It was hard for me to tell who was more excited. Rich has wanted to take the boys for the longest time, and this summer he was determined to do it. The nicest thing about it is that Jack's friends will be up there this week also, playing in some kind of baseball tournament. He and Rich have made plans to see some of their games and hang out with the boys during the off time. It should be a great couple of days.
This week in the mail, Jack got a package from Mike Breen of NBC Sports. He called Jack from Miami last month when he was commentating for the NBA Finals. He promised Jack a cap and made good by sending three. Yesterday, Jack rotated all of them in an effort to find his favorite. It is proving more difficult than he thought. I am enjoying watching him immensely. This has become my favorite pastime. He is less than thrilled with my new hobby.
Speaking of new hobbies, I am learning how to type at this ridiculously late stage of my life, courtesy of computer software entitled " Mavis Beacon Teaches Typing". Mavis and I have developed something of a love-hate relationship, as I am determined, but remarkably inept. It might be too late to teach this old dog new tricks, but I'm not giving up. Our family motto pretty much sums up my feelings on this- "What we lack in skill we make up for in tenacity." Truth be told, you have never seen a less talented more tenacious typist. So despite Mavis' quickly escalating frustration, I am in for the long haul. Title of her next CD "Mavis Beacon Teaches Almost Everyone to Type with The Notable Exception of Karen Szigety". I am undeterred.
Mike Marion is at it again. As some of you know, Jack will be hitting the first shot in "The Imus Teed Off Challenge" at this year's Cox Classic. It is an honor, and Jack knows it, so he will be working with Rich to get ready. I love this kind of thing because it is not something that I am responsible for, and it gives Jack a reason to work on his endurance. But, Mike is not content to leave well enough alone. So many of the people involved in the Cox Classic have followed Jack's battle from his relapse to his salvage chemo through his transplant and recovery. Mike wants Jack to give a speech again, so that all of his friends can hear, firsthand, what these past months have been like for him. Furthermore, Mike has set up an interview with The Star Ledger this week, so that Jack can speak about what The Cox Classic has meant to him. All of this is tinged with emotion for me, and I hope that I don't embarass Jack or Mike. If I do, I am fairly confident that Jack can help Mike find the nearest exit. Details to follow.
Thursday, July 27, 2006 4:36 PM CDT
It is a hot, sultry summer day and Alex and Jack are at loose ends. All of their friends are away on vacation or at camp and they don't know what to do with themselves. Alex is snowed under with his summer reading assignments and is working several hours a day on that. But a boy can only take so much schoolwork in late July. Jack has retreated to his room to play on his laptop.
I am tired, and not worth much in terms of entertainment value. My tutoring schedule is very busy and I am behind in so much of my work, as a result of Jack's illness. Trying to keep pace leaves me little time to attend to the boys. In a way, it is time for them to fend for themselves, yet it is hard to shed old habits.
Jack is making significant progress in his return to vitality. The days at the beach did him a world of good, and have jump-started his efforts to increase his stamina. For the first time since he got home from the hospital he has a spring in his step. I am relieved to see him making progress, no matter how slow.
Earlier in the week Jack stubbed his toe badly, and it blew up like a balloon. He said that as it bent back he heard a crunching noise. Not what I wanted to hear. I called his pediatrician, Dr. Stoller, and she said she wanted to come see him at home, after she was done with office hours. By then the toe was completely black-and-blue. Jack's physical therapist saw him that day and felt it needed to be x-rayed. So not what I wanted to hear. During the day, I started to think about his cancer, and wondered if the chemotherapy weakened his bones. Then I realized that it probably bruised as badly as it did because his platelet counts are low. Dr. Stoller agreed that that was likely the case. The good news was that the toe was not misshapen and Jack could bear weight on it. Now here was news I could use. She wasn't particularly worried, and in the end everything was fine. God I love that woman. Afterwards we went back to her house to see her new kitty, Maggie, who Jack absolutely loved. On our way home, Jack said even he realized how lucky he is to have her for his doctor.
The new picture comes to us courtesy of the professional photographer for the New York Yankees. Doesn't Mariano Rivera look sharp standing next to our guy, Jack? Rich is having an 8x10 copy made for Jack to take to the ball park the next time he goes to see the Yankees, so he can have it autographed. It made Jack so happy to get it in his e-mail. There are more photos of Jack with Derek Jeter, Jorge Posada and Robinson Cano in the dugout, but I need Kate to load them on the website.
Speaking of Kate, she is home from Japan, and had an amazing experience. Her circadian rhythm is out of whack and she is roaming the house all night, cooking rice and eating Japanese food. At 5 AM she goes to sleep and wakes up at 5 PM. Today she attempted to get back on EST and is not having much success. I am told by my friend, Rei Kawahara, that it takes time. We've got plenty of that.
Well, Woody and Aunt Betsy are bound and determined to walk this road with Jack for as long as it takes. Woody is right, the guestbook really does lift his spirits, so write to him if you can. It makes a difference.
Saturday, July 22, 2006 10:54 AM CDT
The week didn't start off very well for Alex. It seems that everyone in this house takes a turn in the hospital. Alex went to work at Eisele's, the garden center where he and Kate work. It was over ninety degrees and empty. He called to say that the heat was bothering him and he wanted to come home. I picked him up settled him in the ac and took Jack to physical therapy. Two hours later he called to say that he had fallen off his bike and I should come home. Dr. Stoller's office recommended that I take him to the ER. Sure enough, he broke his elbow in two places and will be in a cast from his fingers to his upper arm until mid September. This went over very badly.
Jack and I are home from the beach. It was a spectacular 4 days with our friends Lisa, Lucy and Wyatt Paterson. Lisa just purchased a brand new home on LBI, and it is gorgeous. The sun sets over the bay, and the view from her living room and front deck is perfect. My favorite part of the trip was watching Jack revel in the sun, sand and water. He and Lucy hit the boogie boards and skim boards with pure glee. It was hard to take my eyes off them, it was magic. I think that's what Lisa had in mind for Jack, I just got lucky enough to be there to watch.
On our first night, we all went out to dinner at a restaurant right on the bay. Lisa insisted that Jack order exactly what he wanted, so he had soda with his meal. He was thrilled to have Lisa advocating for him. It happened over and over throughout our visit. He picked and chose things that he ordinarily would not ask for because Lisa was intent on making it a memorable vacation. It worked seamlessly for both of them.
On Wednesday, I took Wyatt grocery shopping and we got the fixings for a home cooked meal. Wyatt loved the store and ran up and down the aisles selecting our ingredients. He surveyed produce with a discerning eye and chose potatoes, onions and broccoli for our meal. At home, Lucy and Jack helped do the cooking. We marinated chicken, chopped and sauteed broccoli in garlic and olive oil and roasted potatoes. Alex would have been impressed.
The kids went crabbing with Lisa. Jack deemed this a "low energy" outing and had some difficulty sitting still for any length of time. The amusement pier was more to his liking, and all 3 of the kids loved the rides. I was content to watch their faces as they hit the roller coaster, bumper cars, and scrambler. Lisa would not let me buy a single token, and I could see that there was pleasure in her ability to do something for Jack.
Thursday morning was overcast and Jack slept until noon. Lucy and I made homemade waffles and potatoe pancakes, bacon and a fruit salad while Jack slept, Lisa took a bike ride and Wyatt played with his amazing collection of Thomas trains. We all sat down to a late breakfast, and Lucy and I got rave reviews for our efforts. The whole process of cooking again and working together with Lucy made me very happy. It doesn't take much.
On Thursday night, Lisa went out to dinner with some friends from Ridgewood, and I took the kids for mini-golf and ice cream. Lucy got a hole-in-one and Wyatt sent his ball careening over the rocks and down a waterfall. We enjoyed both in equal measure.
We are home now, and I am glad to be back. It was a terrific trip, but there's no place like home. The big news here is that Kate is due back from Japan late in the day tomorrow. I don't know how I will pass this next day and a half.
Speaking of Kate, she applied for admission to the Columbia University Science Honors Program again this year. It is an all expenses paid program that is difficult to get into. Her test was scheduled in the midst of Jack's transplant, and I absolutely forgot all about it. The night before I was able to get her a ride with a classmate. She took the test, said it was difficult, and thought she might not get in again. But the envelope came, and I did the pinch test. It was thicker than last time. She got accepted! So throughout the school year she will attend Columbia each Saturday from 10-12:30, and take courses in biology, physics, chemistry, etc.. It is a wonderful opportunity for her, and Rich and I are so happy for her.
Monday, July 17, 2006 6:23 AM CDT
I had a wonderful birthday celebration last Sunday, courtesy of the Waga/Schechter clan. Woody and his daughter, Lauren, had their annual lasagna bake-off, and my extended family acted as taste-testers. Lucky us. Woody and Lauren worked the crowd, subtly and not so subtly extolling the virtues of their lasagna. As for my family, we totally agreed with whomever we were speaking to. After all, we were being fed some pretty amazing food. Why risk offending anyone? I think Alex is ready for politics. Lauren’s husband, Bob, made a lemon chicken, and his world famous