|
||||||||||||
Click here to go back to the main page.
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 sorbet. My friend, Mary, made her signature salad and brought a beautiful birthday cake. When it was time to blow out the candles, I asked everyone to make a wish with me. I’m pretty sure we were all wishing for the same thing. I hope the Wish Fairy, sometimes known as Uncle Richie, will grant my wish this year.
We are back from Cape Cod. The weather was not so great, but the visit was wonderful. Jack got to go out with his Uncle Jimmy and his cousins to play mini-golf a couple of times. Jimmy also took him to the driving range, but it wore Jack out. My brother, Ray, was on the Cape at the same time, speaking at a conference at the Wood’s Hole Oceanographic Institute so we got to see him and his family as well.
Rich’s friend, Dermot, took Rich and Jack to the Yankee game on Friday night. When they got to the stadium, Jack saw Jerry, one of his friends from Yankee Security, and Jerry brought them down to the field . Jack watched the players take batting practice and spotted Mariano Rivera signing autographs for some kids. He waited patiently for Mariano to look up and notice him. When he caught sight of Jack, Rich said it was magic. He stopped what he was doing, told the kids he needed to talk to his buddy Jack, and gave him a bear hug. Then he took Jack over to the dugout and spoke to him alone for about ten minutes. Rich said Jack beamed the entire time they were together. Professional photographers snapped shots while they were speaking, and the photographer for the team promised Rich a copy of his best shot.
Jack sat in the dugout for awhile, visiting with his friend, Ray Negron, and Joe, another buddy from Security. Ray asked Jack to come to the stadium on Wednesday for a publicity shoot with Channel 12, but we will be in Long Beach Island with the Patersons. Jack and Rich stayed for the whole game, and watched Mariano get his 399th career save.
On Saturday we went to the Paramus Pool with the Cohans, Bob, Hannah and Bobby. The weather was perfect for swimming, and Jack played ping-pong with Hannah (she whooped him pretty bad, but in the end, he took one match) and a game called newcomb(?). It was a lot of exercise for Jack, and he was worn out by the end of the day. For my part, I sat on my butt and talked to Bob, Bobby, and Bobby’s parents. Something for everyone.
Jack has started physical therapy in earnest and is seeing a therapist twice a week. He is getting some relief for the pain in his back, but it is slow going. The bigger question right now is building his endurance back up. He is tired so much of the time, and it is an effort to get him going. His doctors tell me that this is perfectly normal and that it will take some time, but I hate to see him like this. So often he is discouraged by how he feels, and I don’t see much improvement over the last month. The only option is to keep going, keep making the effort. It will come, I am sure.
I think the import of what Jack has been through these last five months is catching up with him. He is quieter, more introspective and thoughtful. I am not surprised, but I miss that bubbly effervescent boy, the one without a care in the world. I am not sure if this is temporary, or if this is a new baseline. Time will tell.
Saturday, July 8, 2006 4:07 PM CDT
Okay, okay. So I took the week off. My inbox has been filling up with queries about Jack’s first week back to ordinary-boy life. I have received some gentle, some not so gentle (you people know who you are) reminders that everyone wants to know how Jack is making out. It occurs to me that Jack is loved by so many, and his quest for health followed passionately by friends and family. The recognition creates for me a sense of calm, a feeling that my family is not alone. I wonder for the gazillionth time about people who aren’t fortunate enough to have the support we have, to have to endure this on their own. But who wants to go there and get all depressed?
So here’s what Jack’s been up to. He healed beautifully from Thursday’s surgery. Jack took some Tylenol Friday morning and went off to his summer CCD program as if Thursday’s happenings were uneventful. On Sunday, Jack, Kate and I were invited to swim at our friends, the Boswick's. Jack was able to shower by then but not swim, so I took some tiny liberties and allowed him to go into the pool. Jack absolutely did not want his bandaging to get wet, so I taped him up pretty well, and let him go. He sat on the sidelines for awhile before jumping in and then checked with me periodically to make sure he was staying dry. After awhile, I could see that he was anxious and told him to enjoy one more jump in the pool before he dried off. As I was changing his dressing for the last time, we talked about the fact that this was my last official duty as the mom of an incredibly brave child recovering from cancer. Pretty heady stuff.
We had another reason to be at the Boswick's. Kate has been selected by The Academies to represent her school in a trip to Japan. It is a collaborative effort by the Japanese government, the Fulbright Memorial Fund and the United States. Four students and two teachers from The Academies will join another group from a magnet school in LA, and work with eight Japanese students on a joint science project. The trip will last for 12 days beginning July 12. It is the experience of a lifetime, and the first time Kate will travel outside the country. She is anxious to do the right thing and has spent time with our Japanese friends, Ray, Rei, Yuki and Kengo Kawahara, learning as much as she can about Japanese culture and customs. On this day we are meeting with my friend Kate’s mother-in-law, June, who has traveled extensively, and has offered to help my Kate with the nuances of long distance travel. June and Kate form an immediate bond, and I watch as Kate takes copious notes. June kindly shares her years of experience, and Kate is riveted by what June tells her. As I write today, Kate is referring to her notes as she begins to pack for her trip. For my part, I am grateful to my friend, Mary Lyons Kim, who is constantly thinking of my daughter, for putting this together for Kate.
On Tuesday, Jack had complete clearance to get wet. It was perfect timing for all the July 4th festivities that have become legend on Fairway Road in Ridgewood. Kelly Coakley has a huge inflatable water slide delivered to her front lawn, and it runs continuously from mid-morning until 8 PM at night. Jack had a ball with all his friends, just by getting wet.
On Thursday, Jack was getting wet again. We went back to Kate Boswick’s house to swim. This time Jack enjoyed himself, in earnest. Kate’s next door neighbors, the Zellers boys, Scott and Kevin, joined him in the pool with Connor. Their mom, Jo Anne, joined Mary and me at the side of the pool. It was a terrific afternoon for all of us. The best part of the day for me was watching Jack do the ordinary things that come from being eleven years old. The process of cancer treatments sometimes make days like this seem to be nothing more than old memories. It was nice to be reminded that that is not always true.
That evening Jack began physical therapy for the gripping pain in his back and upper body. I was very worried that it was a long term side effect from his chemotherapy. Luckily, the therapist believes that it is short term, due to the weeks in bed. Jack got a painful, but wonderful massage, lots of stretching and some exercises to help him in his recovery. He will also begin to do some work to build up his endurance again. Jack sees that he has work to do, but is excited by the prospect of grabbing back his health. Me, too.
Yesterday was the biggest day of the week for us. Jack went into the clinic to see Dr. Halpern. As we were pulling into the parking lot, Jack told me how much he didn’t want to be there. I reminded him that we were going to see Dr. Halpern and his whole attitude changed. He worked his way around the hospital, checking in quickly before running off to see Lynn Hoffman. The new picture with Lynn shows him giving her the donations from The Latin Banquet and The Travell Fun Run, totaling $1245. I listened to them catch up with each other, and I had to drag him from her office when it was time to see Dr. Halpern.
Jack showed Dr. Halpern his fingernails, which are all damaged from the chemotherapy. He is losing his nails, as if he closed a car door on each and every one of them, It is painful, but to be expected, and Dr. Halpern reminds me to keep his nails short until the new ones grow in. Jack is animated and happy, and Dr. Halpern is pleased to see him feeling so good. He asks Jack if he feels like this is something that never happened, and Jack looks at him like he’s lost his mind. Jack tells him that he knows what he’s been through, he’s just decided to put it behind him. Dr. Halpern acknowledges that he is on the right track. We talk about fatigue and he tells Jack that he will have to gradually build up his endurance, that he must start the process soon.
Now, I am tired of writing. I hope this will hold all of you for a bit. Jack and I are headed up to Cape Cod with my mom for a week. I will try to write from the local library, but there are no guarantees. Thanks for loving Jack so much.
Friday, June 30, 2006 2:22 PM CDT
Jack is done. He moved through his surgery yesterday like a seasoned pro. We arrived at the hospital early; Jack was anxious and wanted to get the procedure done and out of the way. His favorite nurse, Dorothy, was there beside him the entire time. She was the one to start his IV for the anesthesiologist. It took two tries before she got a good spot in the top of his right hand. IV starts are always painful for Jack and leave us both so nervous. He asked to have his sister, Kate, with him as all this work was being done, and she took her place by his side with ease. I absolutely can see her pursuing a career in medicine. She has the intelligence and the heart to make a compassionate physician.
Once the IV was in, the anesthesiologist put him right out. Kate and I watched as he went to sleep. The surgery itself took less than half an hour, and I was back next to him in no time. When he was done, Dorothy wheeled him in to another room for recovery. Within half an hour he was sitting up, drinking and eating. By noon we were on our way to NYC for his final round of radiation.
When we arrived and checked in, Kathleen paged Jack and asked him to come back for the last time. He hopped onto the table, showed her his port-free, scrawny chest, and got the job done. It was a glorious day.
Jack sees Dr. Halpern again on July 7th. Until then it is summer, wonderful summer.
Wednesday, June 28, 2006 6:42 PM CDT
It is Day 54, the eve of Jack’s last day of active treatment. Tomorrow is a busy day. Dr. Valda moved up the time for Jack’s surgery so he cannot have radiation before the port gets removed. If we risk it and run late, Dr. Valda has another surgery scheduled for 11:30 and would be unable to remove Jack’s port until July 5th. This means that Jack would miss all the fun on the 4th and he doesn’t want to do that. Jack and I talked this over at length when he came home from radiation with Mike Hansen. I am amazed at his ability to problem solve and to understand the complications of his care. When all was said and done, he chose what was right for him. He reminded me that if he was feeling sick from the anesthesia he could always postpone radiation until Friday. I had completely forgotten that this was an option. I am glad that he is here to keep me on course.
So we leave at 9 AM with my friend, Kate Boswick, keeping us company. I am glad to have her join us. Kate is easy to be with and can take the edge off what Jack and I are feeling now. Jack is nervous, so am I. But I think we are feeling the same thing for very different reasons. Jack is worried about the surgery tomorrow, my anxiety has more staying power. There is a common feeling amongst cancer patients who are undergoing active treatment – while you are receiving therapy you are protected. When that ends, the worry begins. While I am ecstatic to have Jack complete this journey, I wonder what these next days, months and years will feel like. I wonder how to balance the joy of remission and the fear of relapse. The possibility of relapse seems so much more concrete now than it did last time. After all, it has already happened. It has been my reality these last 4 plus months. I am happy to say that this is not Jack’s reality. He is embracing summer with a full heart, and is genuinely ready to have fun with his friends. I get a rush just by being near him, just by siphoning off some of his love of life. For now it will have to be enough. And maybe that’s the point; maybe I don’t look so far down the road; maybe I can enjoy what’s here, what’s now. Maybe I strive for balance, knowing that some days will be good, some not so good.
Yesterday, I went to see Josie Dvorken at her studio in town. She had the portraits that I selected ready for pickup, and I was anxious to see how they turned out. Josie wanted to give us an 8x10 of the family, and I chose for purchase 5 smaller prints. When I got there, Josie had the 8x10 mounted and framed. It is spectacular, and captures the unique qualities of each of our children. Rich looks pretty terrific, too. The smaller photos were packaged in a beautiful box, each protected in a plastic sleeve, waiting for mounting and framing. I was thrilled to have them, and ready to pay Josie, but she refused to take my money. It was such a gracious gift, and I was absolutely speechless. She spent quite some time the day of the shoot, then chose her favorites for us to review in a slide show, prepared a small photo album as a gift to me, and then printed the six photos. It was very generous, and very much appreciated.
As a final note, I want to ask each person that logs onto Jack’s site in the next few days to send him a message as he complete his treatment. His guestbook really lifts his spirits, and mine, too.
Monday, June 26, 2006 12:07 AM CDT
I woke up early this morning, intent on writing a journal entry. Sometimes the words come readily, other times it is an effort. Today it is the latter, but after a time I was satisfied with my words, and hit enter to update Jack’s home page. All of my work was done on Alex’s laptop, as mine is in for repair, and when I went to record my writing, it disappeared. It is only now that I am ready to try again.
Jack’s weekend started off really well because Michael Kavanaugh accompanied us to both hospital visits on Friday. Michael’s school work coupled with some illness has kept him away from seeing Jack. With that behind him, Jack was thrilled to find Michael at our front door. We went to Hackensack first, and the boys played video games in the teen lounge until it was time to have Jack’s blood drawn and his port flushed. Michael stayed beside Jack the entire time Dorothy worked her magic. Then it was off to MSKCC for radiation, and then some fun at The ESPN Zone. Being with Michael makes Jack happy, and his joy is contagious. I was glad to just be with them.
When Jack got home he rested up a bit before going to see Lorraine O’Brien, a close friend of Pat Lang’s for a massage. Lorraine has generously agreed to help Jack with the muscle tightness in his neck and back. Jack is so ticklish that it takes Lorraine some time before she can get Jack to relax. But she is determined, and Jack really needs her help. They find their rhythm together, and I leave Jack in her capable hands. When he emerges an hour later, he is relaxed and visibly more comfortable. He is holding a bottle of peppermint-scented oil for me to use at home. Lorraine has shown me how to help Jack, and he is willing to let me practice on him. We’ll see how that goes.
The four of us head out to Nellie’s for pizza, and Jack seems to be completely at ease with all us women. We talk about school, healing and summer fun. It is a perfect way to cap off the day.
Today, Jack began his summer CCD instruction, and it is nice for him to be with friends again. Marty picked him up from church, and they went into NYC for radiation together. It is his last time there with Marty. I am hoping this whole week is a week of last times. Everything is set for Jack to have his port removed on Thursday. His platelet count is responding to the radiation, but is still reasonable at 114.
Friday, June 23, 2006 5:17 AM CDT
Jack has had an amazing couple of days. He was so excited to return to school and see his friends for Field Day. It did not disappoint. Pat Lang, one of the secretaries at BF, e-mailed me to say that the atmosphere at school was electric with the buzz that Jack was back. It must have been wonderful for him to be treated as such a celebrity, and I am glad he got to cap off the year in this way.
Although he got to participate in Field Day events, he was somewhat restricted in what he could do, because of the port in his chest, and the fact that he tires so easily. We focused instead on what he could do, and he chose a bubble gum blowing contest and golf accuracy. All in all, it was a great way to return to BF. Wednesday was his first day back, yesterday was the last day of school. Not a bad school week all-in-all.
After school, I picked Jack up to go to MSKCC with his friend, Connor Kim. We hit a ridiculous amount of traffic, but the boys made the best of it. At the hospital, Jack introduced Connor to Wilson, his favorite parking attendant, and then to the radiation techs, Matt and Kathy. Kathy explained the radiation process, in detail, to Connor, who feigned a genuine interest. I know this because I have seen the same expression on Connor's face when I am all hopped up about some math work we are doing. Kathy doesn't know Connor that well, so it really worked out for her.
When Jack finished his radiation, it was time to see Dr. Wolden. While we were waiting in an exam room, the boys played "sink basketball" with a tennis ball Jack plays with in the waiting room. Jack has given me the cover of the Treasure Chest to use as a backboard. This is a fabulous game, except that whenever one of them gets a basket, the electric eye in the sink turns the faucet on, hitting the "backboard" and completely soaking me. The boys love this more than I do, so we keep playing. Now, Dr. Wolden's nurse, Carol, comes in, and I can't hear her with the water running and the ball hitting the cover of he Treasure Chest. It is time for the boys to hunt for treasure in the box while I talk to Carol. They find what they are looking for and play Jack's favorite game with the sticky hands on a long string and tattoos in a small plastic sleeve. Here's how it works. An odd number of tattoos is placed around the room, and on the count of three, the boys start throwing their sticky hands toward the tattoos. The room is small, they are loud, but Carol is gracious, and marvels at their creativity. I remind them that we are in a hospital, and it is no place for fun. We all laugh and go right back to what we are doing.
Carol helps me to resolve some of my concerns, and Dr. Wolden irons out the details for Jack to have radiation early on Thursday, June 29th. She is fine with him having general anesthesia and the port removed in the same day. I can see the light at the end of the tunnel.
Yesterday, I went to the grocery store for the second time in four months. It is nice to resume old habits. When I came out to the parking lot, there was a truck parked next to my car, with a Jackstrong bumper sticker firmly in place. As I was wondering who the truck belonged to, the owner came out. It was someone I did not recognize, and he told me that he was Bob Schechter's neighbor. It seems Bob has kept him apprised of Jack's progress, and he asked Bob for a bumper sticker. I love the fact that so many people are rooting for Jack, some we don't even know.
A couple of miscellaneous notes and then I'm done. Monica Buesser had her annual fun run at Travell, and raised $345 for Tomorrows Children, in Jack's name. Magistra Carroll stopped by to see me at BF on Tuesday, and handed me a check for $900 to be donated to Tomorrows Children, in Jack's name. The money was raised at their annual Latin Banquet. Speaking of the Latin Banquet, a group of seventh grade students made a banner for Jack that reads "May Fortune Smile on You, Jack". It is written in Latin on top and translated on the bottom. Jack's picture with Steinbrenner and Yogi graces the center. It hung at the entrance to the banquet, and now belongs to Jack. I cannot pass that banner without tears coming to my eyes. I will stitch a pocket for a dowel, and hang it in his room. Thank you to Maddie Moran, and the other students for remembering Jack in such a thoughtful way.
Okay, I will leave you with the best news of the week. Jack's got the softest peach fuzz sprouting from the top of his head. He looks like a baby bird, and I have to restrain myself from rubbing his head. Some days I am better at this than others, but who can blame me?
Wednesday, June 21, 2006 5:29 AM CDT
It is Day 47, and Jack is headed back to school for the first time in months. He is excited to see his friends and teachers for these last two days of the school year. Yesterday, he was speaking to Pat Weeks about finishing up the work he owes his teachers. Pat has been coming to our home to help with his instruction since he completed his transplant. He works so hard for her, intent on doing what his teachers ask of every sixth grade student. He tells Pat that they can work together at BF, if it will help him stay caught up. She smiles at him and says that he should just have fun with his friends these couple of days. They have made excellent progress together and there is very little left to do. He consults a checklist of outstanding work that he has constructed, and agrees to take today and tomorrow off. I listen to these negotiations while I am doing work of my own, and smile at their ease with each other. Having Pat here with Jack everyday has been a gift, and we both know it.
I spoke with Jack's pediatric surgeon, Dr. Valda, on Monday, with the hope of having his port removed on 6/30. He is leaving for vacation the evening before, so that won't work. We begin to talk about the 29th and how Jack can have radiation and then surgery. MSKCC has agreed to see Jack for radiation at 9:15 AM. Dr. Valda can operate at 11:00 AM in Hackensack. It seems a little tight to me, but this is so important to Jack. Today, I will try to coordinate all of the opinions of his medical docs to see if this is reasonable. Then I have to get insurance clearance and button everything down.
Jack's counts all look good. His platelets are steady at 149.
Monday, June 19, 2006 6:34 AM CDT
One would think that Mike Marion would be occupied celebrating his birthday last week, and take some time off from thinking about Jack. It didn't work out that way. Early in the week, Jack got a Fed Ex from Jimmy Roberts at NBC Sports. Jack met Jimmy at The Cox Classic, and he was happy to receive the package. Inside, nestled between two pieces of cardboard was a personal letter from Jack Nicklaus, Rich's favorite golfer of all time. Jimmy attached a note of his own, saying that he thinks of Jack often and is wishing him success with his current treatment. Jack is ecstatic, as he reads the letter and carefully places it back in the envelope. I just watch this smile spread across my sweet boy's face and thank God for all the wonderful people in Jack's life.
But, Mike's not done for the week. Last night, a call comes from Mike Breen at NBC Sports saying that he is a good friend of Mike Marion's (such a surprise), and could he please talk to Jack (another big surprise). He explains that he is in Miami doing commentary for the NBA Finals, and wants to see how Jack is making out. You and everybody else, I want to say. But I don't want to risk my position as Jack's agent, so I politely hand the phone to Jack. This is always the best part for me. It takes a moment for Jack to register who is calling and why. When recognition kicks in, he begins to beam, and his whole body shivers with excitement. It gets me every single time.
But we are not done with Random Acts of Kindness this week. Alex has a big math exam, and I have miscalculated my schedule. I do not have the time to help, and he reaches out to Courtney Pfeiffer, his seventh grade pre-algebra teacher. It is short notice, and I am reluctant to have him call. I am also feeling sick and weak, afraid that I am coming down with something. None of this matters to Courtney, who shows up and saves the day. Before she arrives, Alex is anxious and pacing the floor. He greets me with a tight grimace, and I think, "uh oh". They work together for 2 hours, and Alex comes up to see me when they are done. He is relaxed and confident. I am incredibly grateful to Courtney for doing what I could not.
I also got a chance recently to see the photos Josie Dvorken took of my family. They are surprisingly beautiful, as we are not a photogenic lot, and I am amazed at just what real talent can produce. When we arrive at her studio, Josie hands me a small photo album of her favorite shots. I am in tears, as I see Jack smiling and hamming it up for the camera. It doesn't hurt that he has a full head of hair in these photos. Josie gives us a beautiful 8x10 of all five of us, and then I purchase smaller photos of Rich with the kids, me with the kids, and one of Kate, Alex and Jack together.
Jack is headed back into NYC with Mike Hansen today for radiation. His platelet count was 153 on Friday, and I am thinking about scheduling the surgery to remove his port. Radiation should finish up on 6/29, and I would like to have the port removed on 6/30. He should be healed and ready for some wet fun on the Fourth of July. It feels great to be winding down.
Saturday, June 17, 2006 10:41 AM CDT
It is Day 43; Jack is almost there. On Day 45, he is free to resume his life without the restrictions necessitated by his transplant. I see the excitement building in him, the anticipation of glorious freedom. The timing could not be better. It is the last week of school, and Jack can return for a portion of the day to be with his friends. To him, this is the sweetest of gifts, and I am happy to share his joy.
I went back to MSKCC with Jack for radiation on Thursday, ready to kick some tech butt if Jack got the same treatment. It was not necessary because Kathy and Matt were far more attentive to Jack, going to the other extreme. I took my time by Jack's side, and was encouraged to do so. What a difference a day makes.
Yesterday, Mike Hansen took Jack into the city for radiation, but first we had to stop in at TCI for bloodwork. I went with them to Hackensack so Mike could see the routine in case he needed to take Jack for blood in the future. The best way for Jack to have a blood draw is for one of the nurses to access his port. It is painless, and we get the port flushed at the same time. But, it requires that we sign in and deal with too much administrative stuff. Last time we waited an hour and 15 minutes. Today, we don't have that luxury, and I ask Jack if he is willing to have a venous draw. He agrees and winces just a little when Teresita inserts the needle. It is over in 5 minutes and Mike and Jack are off to Memorial. I am going to work, just down the road.
As Jack is going in to the hospital parking lot, he remembers that he has not taken his Kytril for nausea. There is nothing to be done, as the medication is with me and he is in NYC. I am annoyed with myself for not remembering. He tells me that it's no problem, he'll just throw up, if he has to.
When he is up on the treatment table, he notices that one of the lines in his port looks slightly pink. He calls me immediately, worried that something is wrong. Mike tells him to ask one of the radiation techs to look at it. Jack smiles politely and explains to Mike that they are not oncology nurses and know nothing about his port. I try not to laugh as Mike recounts this story to me. I tell Jack that I will call TCI and get back to him. When I speak to Carly, she tells me that he has to come back to the clinic to have it looked at.
I leave work and meet the boys in the hospital. Jack gets checked in after a little nudging, and I find his nurse, Dorothy. By now Jack is nauseous, and gets sick to his stomach as Dorothy is flushing his port. I have the bucket, Mike reaches out to wet cloths to wipe his face and it is over quickly. Jack's port looks as it should and we all head for home. I am wiped out, and glad Jack's medical day is over.
Wednesday, June 14, 2006 5:53 AM CDT
It is Day 40. Jack began radiation on Monday, and is already struggling with its effects on his weakened body. He is nauseous and sick to his stomach several times as he works with Mary Ann Kwiatkowski on his science project. They are working at the kitchen table, and I stay close by to clean him up and offer encouragement. Mary Ann is in tune with what he is feeling, and quietly shifts the work to her hands. She offers to be his scribe as they create "sloppy copies" of the text that will accompany his invention. He never complains or asks to stop, only comes to rest his head against my body from time to time. I am heartsick at his struggle, and realize that we have 3 weeks of this to face. I wonder if he sees my despair, knows that I am anguished. It becomes increasingly difficult to hide my feelings from him, and this makes me feel worse. I am at a loss as to what to do. Sleep eludes me now and I am up almost every night for several hours. Maybe this is fatigue, and I tell them both that I need to lie down for awhile.
I have cancelled his work with Mrs. Weeks this afternoon, and when Mary Ann leaves, he comes to sit by my side. Being with him makes me feel better, and I am able to cope with the rest of my day. All of my students have finals this week and my schedule is jam-packed. I am tutoring 5 hours a day, and there's none of this fun enrichment work this week. I am bound and determined to see my students succeed, and adjust my schedule to meet their needs. The year is winding down and I am looking forward to a break.
We left early yesterday morning to have Jack's blood drawn at TCI. Dr. Wolden wants counts on Tuesday and Friday. Our insurance will not approve bloodwork at MSKCC so we have to go to Hackensack and then NYC. His counts are a mixed bag. WBC count has dropped to 3.1, hemoglobin to 10, but his platelets are up to 129.
When his bloodwork is done, we are scheduled to be in the Learning Center at TCI. The Bergen County Academies have purchased a robot that is in use at HUMC, and the hospital has asked Jack to be at the joystick operating the robot at BCA remotely. This is so cool. The robot is called Mr. Rounder and is used by physicians in the hospital to visit patients. A doctor could be in California at a conference and still make rounds. It is interactive so the physician can "examine" a patient remotely and prescribe care. It is this very robot that the hospital agreed to send to BF, so Jack could attend his classes, via the robot, while he was inpatient for his transplant. I was really hoping we could pull it off, but there were cable problems that could not be resolved.
Anyway, The Superintendent of Schools, Robert Aloia, is in the school with Kate and Alex, and their principal, Patricia Cosgrove. Jack introduces his brother and sister, and talks with students about MLB batting averages. At the hospital, we are viewing this from a computer monitor on a split screen. I can see my older two in one location, and see Jack in another. The technology is absolutely amazing, and I am so glad to be part of this groundbreaking adventure.
We leave Tomorrows Children and head straight into Memorial for radiation. I am hoping things go better than they did on Friday. We are quickly called into the treatment room, and Matt lines Jack up on the machine with a stern request to stop moving, and I can see Jack's anxiety. I watch to see that the field is as it should be, and then he is ready to begin. We are all leaving the room when Jack calls out to me, and I turn to see what he needs. Kathy is in my way, and says "he doesn't need anything". I push past her in anger to get to Jack. All he needs is a kind word, and some encouragement. It takes all of 5 seconds, and I am furious at this cranky woman. Fortunately for her, she is nowhere to be seen when I emerge from the room. When I see Dr.Wolden tomorrow, I will ask for her advice on this.
Last note, I have been working with Carlos Nodares, Alex's famed tech teacher from the Academies, on getting videos and photos of Jack linked to the website. He has done an amazing job, and I ask that you let me know, via e-mail, if you can access it. We won't have space on the Academies' server for very long, but I am trying to find a new home for all of it.
Monday, June 12, 2006 5:17 AM CDT
Okay, okay, so I left the most important piece of news out of Jack's journal entry on Saturday. I have gotten so many phone calls over the weekend about his radiation that I can now remember what really matters. So, here goes. Jack was invited to the hospital to meet his buddy Robinson Cano along with Melky Cabrera. Jack told me that there was going to be a surprise guest, but that he couldn't tell me who it was. I was very understanding, and not the least bit bitter, considering that I am his mother. But, I love a kid who can keep a secret, so I didn't ask any questions.
When the players arrive, there is lots of fanfare, and I am craning my neck to see who Ray Negron has brought along. This is not really necessary because it is a giant human being, who comes into my field of vision fairly easily. It is Darryl Strawberry, former Mets and Yankees player, and now I think, we've got something for everybody today. Jack takes off with Ray and David Jurist, and leaves me to hang with Annie Campbell and Lesley Bruno from PR. There are reporters from The NY Daily News, The NY Post, The Record, The Ridgewood News and BC Magazine snapping pictures of the players and Jack.
Robinson remembers Jack from their night together on the infield of Yankee Stadium, and asks Jack how he's doing. He wants to know when Jack will be well enough to come back to the stadium to see "The guys". I'm not falling for that trick again. The last time all I got to do was stand in the wind tunnel. Jack, on the other hand, tells Rob that when he reaches Day 45 on 6/19, he will be free to go.
The players tour the new children's hospital, and it is the first time that Jack is back since we left, 2 1/2 weeks ago. It is somewhat eerie and we wait in the corridor while the players visit patients. I stare down the hall to Jack's old room, and quickly turn my attention back to the festivities.
Jack had his blood drawn when we arrived, with the hope that his counts would come back up. On Tuesday, his platelets dropped to 63, and Noreen, one of Jack's nurses, said there was a chance it would come up to 100 by Friday. His counts are back and his platelets ease in under the wire at 102! We are both ecstatic as we leave the hospital to go into NYC to meet Dr. Wolden. They are doing a run through of his treatment today, to make sure everything is set for Monday.
Jack is being treated on the same machine as last year, number 443. We check in, ready to do some schoolwork while we're waiting, and I hear his name called over the loudspeaker. He slips off the chair and scurries back to the treatment room. It bothers me that he knows this routine so well, knows exactly where to go and what to do. The techs are new and introduce themselves as Matt and Kathy. I ask a gazillion questions and it takes a shockingly short period of time before I get on Kathy's nerves. But, I want to understand what the regional field looks like, whether there is pelvic involvement that will affect his marrow, and how the blocks were cut. They look strange to me because they are one-sided. Matt explains that the machine ends at his outer borders, so it is not necessary to block him there.
When Kathy is lining him up with the lasers I ask her why she is not using an old tattoo in his sternum. She's listened to enough of my questions and tells me that this tattoo is not to be used as there are no instructions documented in his file. I tell her that I was in the room for Jack's simulation, and I know better. It is getting uncomfortable, and before I suggest that she speak to Dr. Wolden, she concedes that what I said makes sense. She notes this in his file. Now, this is the third time Jack will receive radiation to his small body, and I want to make sure we are irradiating the right spot. This works out well, as they were setting him up for his spleen. The blocks have been mounted on the plexiglass frame incorrectly, making the spleen look like the right location, I'm guessing. Jack and I are asked to leave the room while his blocks are remounted at a 90 degree change in angle. Now things are looking as I expected them to look. Kathy applies a red vegetable dye that will center her field and they tell me Jack can have radiation today if that is what I want. I talk with Dr. Wolden's fellow and we decide it is better for him to start Monday and get 5 consecutive days of treatment. Besides, I am exhausted and want to leave.
Jack begins radiation at 10:45 today, with Rich leading off for the week. I go tomorrow and Thursday. Marty Walter and Mike Hansen take the other two days. Mike and Marty helped last year and Jack is so happy to have them with us again. After awhile, Jack needs a break from his parents, I guess. Probably me more than Rich.
Saturday, June 10, 2006 10:58 AM CDT
It has been an exciting, jam-packed week for Jack. Some disappointing stuff, mostly wonderful news. I wrote briefly about the Tomorrows Children's Fund Picnic, but I didn't do it justice. David and Alice Jurist have been hosting this celebration at their home for 21 years. It is an enormous undertaking for Lynn Hoffman and the staff from TCI, with attendance reaching 1200 people. There are carnival games for the kids, homemade Italian ices (from Brooklyn, no less), caricatures, and non-stop food. In addition, the Jurists' have their own tennis court, where kids got mini-lessons, and an in-ground swimming pool staffed with lifeguards.
The best part of the day for me was being with my wonderful friend, Barbara Del Vecchio. David is on Barbara's e-mail distribution list, and was anxious to meet her. So I got to bring her and her daughter, Justine along with me. David has commented many times that he has never in his twenty-plus years of doing this, seen another family receive such constant and generous support. He recognizes that Barbara is at the center of so much of this. Me, too. The thing about Jack's illness is that there is very little time left for the fun stuff. Sunday, Barbara and I got a chance to catch up while Jack and Justine enjoyed the picnic.
Now David is very attached to Jack, and at some point felt like I was neglecting him, so he sent Jack inside to rest. Jack does his version of a meet-and-greet with David and Alice's seven (you heard right) children and makes himself right at home. Long past the time required to gain his strength back, Jack is still on the inside. I am not. What I know is this - Jack had the most glorious day. His face was lit with the smile of a child who knows with certainty that he is loved. I am grateful to David and Alice, Lynn, and Ray Negron for caring so much about Jack. Without question, it speeds his recovery.
On Monday, we got home from our appointment at Memorial Sloan-Kettering to find a voicemail message from Phil Simms! Jack met Simms in September at The Cox Classic and he is calling to speak to Jack. He tells us that he hears wonderful news, and I know instinctively that Mike Marion has been keeping him abreast of Jack's medical treatment. God I love that Mike Marion. He is shameless in his desire to help Jack, and I know he has reached out to Jim Nantz, Rudy Guiliani, Phil Simms, etc. to keep Jack upbeat. It is working. Jack flashes me his signature smile as Phil asks Jack to call him back because he wants to speak to him, and come for a visit, if Jack is available. As personal secretary to Jack, I am trying to find an opening. We shall see.
So things remain somewhat quiet for the rest of the week. Jack works with Mrs. Weeks on school assignments everyday and then spends some time with Kathy Shambura and Mary Ann Kwiatkowski. Kathy has done extensive research on the oceans unit that Jack is working on for science. She comes into the house loaded down with all kinds of experiments, books, a video and supplies. It seems that she and Jack are going to create an oil spill in our kitchen. I am nosy and listen to their conversation as they talk about the Exxon Valdez, and the effects on wildlife and the environment. There is a big Rubbermaid container filled with water, which they spill vegetable oil into. Feathers are everywhere, coated in oil, and they attempt to contain the spill with string and then talk about cleanup ideas. It is a perfect way to demonstarte the devastation of a spill, and I am so glad to have her here, teaching Jack again. I can tell that she has reached him, because we discuss the subject later in the day. He tells me that people should take greater care when they are responsible for the environment. I tell him he is right, and we discuss his role in making changes.
Mary Ann Kwiatkowski has taken on the task of helping Jack invent a working product for science, designed to make life easier. They are fully engaged in the scientific process as they brainstorm several ideas. Ultimately, they decide on a device that can be engaged when our cat goes out late at night, and we all want to go to sleep. It is pretty clever, and reminds me of the game, Mousetrap. My advice is requested on several occasions, but mostly I am free to work on medical paperwork for Jack. It is such a relief to me to have her help.
On Thursday, my sister-in-law Carol, came to visit with my neice and nephews. They had off from school for Brooklyn-Queens Day and were anxious to see Jack. The kids are young, and always coming down with something, so they have not seen Jack in a long time. We went out for lunch. No one fought in the restaurant (pretty big surprise), so we weren't asked to leave. That is how I define a successful meal. I have so much more to write, but Jack and I are headed out for a visit with Connor Kim, master jokester.
Tuesday, June 6, 2006 6:12 PM CDT
It was nice to see Dr. Wolden again. She is a kind, compassionate physician and we are lucky to have her taking care of Jack. I gave her Jack's scans and a brief medical history since Jack's relapse in February. She examined him, and then went off to take a look at the CT scan so that she could define the borders of his abdominal tumor. This is important because you want to make sure to irradiate all of the original tumor site and then some. She wants to include a wider field than last time, but at the same intensity. This is a relief to me, because there are some pretty intense side effects at higher doses. I am buoyed by her confidence.
Jack is scheduled for simulation at noon, so we have about an hour to kill. He is hungry and we take off for First Avenue in search of food. He spots a pizza shop and we both have a terrific square slice. Nothing like NYC pizza.
Back at the hospital, Jack gets ready for his simulation by stripping down to his shorts. His chest is so skinny and small. He still has not regained the weight he lost during the process of his transplant. I see his eleven surgical incision scars plus the scar from his subcutaneous port and his current med-comp port. The radiation techs are focused on the numerous permanent tattoos that dot his body. I don't know where to look, so I focus on his face. He is tense, and the techs are trying to get him to relax his shoulders, which are up around his ears. Mine, too.
Now the lasers are activated, and I watch the process of lining up his little body begin. There is a lot of geometry involved in his measurements, and briefly I am distracted by this. But, I am anxious to know how many of his existing tattoos can be reused, and where the new ones will go. Last time, he had at least one tattoo in his sternum and the placement was painful. My body is taut with the anticipation of what is happening. The tech is telling me that he can use several of his existing tattoos and decides to inject dye in just one location. As I bend over his Jack's slight frame, I can see that it is well below his sternum, and we both relax visibly. Another hurdle passed.
The simulation takes over half an hour, and Jack has had to lay completely still on this rigid board the entire time. It is painful and difficult to do. I am relieved when it is done, and he can dress to go home. The tech tells me that we must be there on Friday at 2 PM for a dry run. If all goes well and his counts are good, we can begin on Monday.
This morning Jack went to the clinic with Rich for blood work. His counts have been steadily rising, and so I was sure his platelets would be greater than his Thursday reading of 80. Of course, things didn't work out that way. His platelets dropped to 63, with his WBC count and hemoglobin dropping as well. Dr. Wolden will absolutely not begin his radiation until he is at 100. It feels awful to me and to Jack, too. I worry that the clock is ticking, but there is nothing to be done. Just wait. It is hard to do, and I am tired of doing hard things.
Friday, we will go into the clinic for bloodwork again. Maybe his counts will come back up. Ray Negron will be there with Robinson Cano, second baseman for The NY Yankees, and Melky Cabrera, Yankees outfielder. Jack spent time during the day talking with Ray at the TCF picnic on Sunday. Ray has written a children's book called "The Boy of Steel", and Jack got to review the galleys with Ray. The picnic was held at the home of David and Alice Jurist, founding members of TCF. David was so focused on Jack's health, and wanted him to stay inside to rest for part of the day. At some point, I went to get Jack to sit for a caricature that I waited on line for over an hour to get. There I am, like a big dope, tapping gently on the patio door and motioning for Jack to come outside. He is curled up on the couch with Max, the dog, watching The Yankees and hangin' with Ray. He mouths "You can't come in here" to me. Take a guess at what I mouth back. He moves quickly to have his portrait done. I am impressed at how clever this child is.
Monday, June 5, 2006 6:28 AM CDT
I spoke to Dr. Wolden early Friday morning, as I was out walking with my friends, Mary Lyons Kim and Kate Boswick. She agreed that we had to begin the work to get Jack ready for radiation, and offered that we could come in first thing Monday morning. I was so relieved to hear her voice, and know that she would be able to work through the process of getting Jack appointments on Monday with specialists throughout the hospital. All I had to do was get insurance clearance and pick up copies of Jack's PET and CT scans from February 21 and April 18 at the radiology center. The scans were the easier of the two, despite the fact that their computers were down. I knew that I could go on Saturday, and even this morning before going in to Memorial Sloan-Kettering if necessary. I have them now, they were all ready Saturday morning. The insurance was a bit trickier. I left word for Jack's case manager first thing Friday morning and heard nothing by midday. On Thursday, she told me that Jack's transplant docs had to demonstrate medical necessity or she could not approve his radiation. I asked Dr. Gillio to call her and asked the same of Dr. Wolden. Late afternoon, she called with the authorization number, and I was relieved to the point of tears. Very often, I feel that life and death decisions are made for Jack, and the weight of his care can be hard to bear. I worry that his cancer will return, and I will not have advocated for him enough. I am so frightened to make a mistake.
Today will take a weight off my mind. Dr. Wolden will work with her team of radiologists to read and interpret Jack's scans. She will define his borders, mark his body with permanent tattoos, and order the cutting of his lead blocks. I pray to God that this can all happen by Friday, so that if Jack's counts are high enough, he can begin radiation therapy next Monday. Last week, I made an appointment for Jack to have bloodwork drawn on Tuesday, but I think I will change it to Friday. This will give him the best possible chance to have a platelet count of 100, which Dr. Brochstein wants before he can begin radiation.
I am calmer than I was on Friday, more in control again. I am ready to go back there, ready to finish this thing.
Friday, June 2, 2006 5:20 AM CDT
The day started out so beautifully yesterday. Three of Kate, Alex and Jack's former teachers from Travell came to have breakfast at 8:00 AM. They came in bearing bagels, muffins, juice and fruit. All I had to do was put up a pot of coffee. They are all retired now, pursuing rich and interesting lives. Kathy Shambura is the only teacher brave enough to take on all three of my kids, as first graders, no less. I absolutely credit her with getting each of them off on the right foot. Kathy set the bar high, and each of my children (to various degrees, of course) rose to do the work she expected of them. I remember Alex coming home with a skeletal drawing of the Nina, Pinta and the Santa Maria. Up top were Kathy's infamous words - "Alex, is this your BEST work?". Time and again he had to concede that it wasn't, and would set himself to the task of starting over. Eventually, he learned to give her what she was looking for with his first attempt, knowing full well that it was coming right back if it wasn't. At times, she made me look like a slacker. Okay, maybe not.
Mary Ann Kwiatkowsi was Kate's second grade teacher, and gave her such a solid foundation in writing. I can see Kate, poised over her first research "paper" on African animals, attempting to come up with a strong "topic sentence". These are very funny words for an eight year old. That year, Kate wrote a story each week, based on a list of words Mary Ann provided to her students. The week would begin with sentences, and build up to the climax of her story. Our routine was that I was the "city editor", and she was the promising new journalist. Early in the week she would pitch me her ideas, and we would hone and sharpen them until she had a product she was proud of. More than once, when things were not going well, she would suggest that I should be relieved of my duties. Fat chance.
Diane Paoli taught Kate in the fourth grade. It was Kate's greatest wish in third grade to have Diane as her teacher, but I thought she might retire before Kate had her shot. Actually, Diane stayed for one more year after Kate's time with her. More than anything else, I remember her devotion to Kate. Her absolute willingness to take Kate wherever it was she wanted to go. That year Kate worked so hard on Continental Math League, and won the medal for the first time. I still see Diane's handwriting on Kate's CML work that I keep for my students. There was always a kind word, an encouraging thought or a hand drawn smiley face on her papers.
These amazing women have come to my home to see if there is a place for them in Jack's home instruction. Last year, Mary Ann and Kathy each worked with Jack on a fifth grade project. It was wonderful for me, because Jack is so at ease with each of them. They relieved me of the burden of his work, which freed me up to take a walk, manage paperwork, or spend some time with a friend. It also gave Jack a much needed break from me. We spent so much time together, and we all know how draining that can be (beat you to it, Uncle Richie).
So we are sitting at the kitchen table, and I tell Mary Ann that Jack has to invent some kind of simple machine for science. Jack's tutor from BF, Pat Weeks, thinks that Mary Ann is the person for this job. She was an aid for Mary Ann at Travell way back when and remembers her gift for science. Kathy wants to help Jack on his science unit on oceans, and Diane thinks his english work on Ulysses looks good. Jack is making excellent progress in all of his studies, and I will discuss this with Pat when she comes today.
It is time to leave for the hospital, and we both realize that it is Jack's last visit with the transplant team. After today, Dr. Halpern is once again, officially responsible for Jack's care. When I was out walking with my friend Carolina Rosen on Tuesday, it dawned on me that there is much to do in preparation for radiation. Jack's radiation oncologist at Memorial Sloan-Kettering has been out on maternity leave, and is due back today. He needs to see her, and we need to begin conversations regarding the radiation field, and the dosages. When I took Jack up to Brown to see Dr. Schwartz, she had some input, and I asked that she communicate her recommendations to Dr. Halpern. The general sense of things is that the radiation protected Jack because he did not relapse in an irradiated site, but well outside the involved field. Dr. Schwartz wants Dr. Wolden to consider a wider field at higher intensity. The problem is that radiation has been implicated in the diagnosis of secondary cancers, so you walk a fine line. My head is beginning to throb with the laundry list of things to be accomplished, and the coordination of medical opinions which I rely on for excellence in Jack's care. On top of all of this, effective yesterday, Dr. Stoller no longer participates in my health care plan, but we are petitioning for continuance of care until I can change insurance plans in January. Layer on top of this that Memorial is out-of-network, and I need to get approval from Jack's case manager to seek his care there. I am officially out of my mind.
The good news is that Jack's counts continue their steady climb back to normal levels. His WBC is 4.1, hemoglobin 10.6 and platelets 80. This is the number that catches my attention. Jack's platelets have to hit 100 before he can begin radiation. That should be sometime next week, which is terrific, except that he hasn't been mapped, no lead blocks cut, no permanent tattoos placed, and this all takes time, which is in short supply. Dr. Wolden wanted Jack to have radiation before the transplant, but we all agreed due to the systemic concerns with his disease that he would be transplanted first. The proviso was that radiation would happen quickly. Now I worry that too much time has elapsed. Dr. Wolden will call today, and help with this, I hope.
Wednesday, May 31, 2006 11:38 AM CDT
Jack is out today with my friend, Mary Condella, so I am home alone. It is, I think, the first time that I am here without him since he got home from the hospital. I feel strange in a way, untethered. We are joined together, Jack and I, bound by the constraints and demands of his illness. Today it is different. I was unsure of how this would go for him, but Mary is so easy to be with. Yet again, I find myself feeling lucky in the most unlucky of situations.
When Mary arrives, Jack is tugging on his sneakers and eager to go. I am pleasantly surprised, because he was so tentative on his last two outings. Silently, I wonder if it will last, if he will get nervous about germs and cooties and want to come back home. I am snowed under with medical paperwork, and don't notice the time passing when the phone rings an hour later. I am treated to Jack's excited voice as he tells me about his morning. He and Mary have made fresh pancakes and had a filling breakfast together. They are off to the stores and Jack wants to know what is on our grocery list. He asks for an inventory of his favorite items, things that might not have made it onto his list. I run through the fridge and pantry with Jack taking notes as we speak. Midway through our conversation it dawns on me that the hesitation is gone from his voice. He is confident, relaxed and I am glad.
As I am leaving a message for one of his doctors he comes bounding in the front door, arms full of all kinds of goodies. He is eager to show me what they have purchased, but Mary's dog, Sophie is waiting in the car. They have got to go. Jack waves goodbye, tells me that they are having "white hots" for lunch, and disappears out the front door. I have not seen him so at ease in months, and I realize that I have just witnessed by blessing for the week.
Sunday, May 28, 2006 8:04 PM CDT
I started this journal entry last night, but then my mom came to visit, so I waited until this morning to polish it off. However, things did not go as planned. The computer has been acting up , so I decided to take the battery out, and have a look. In hindsight, it might have gone better if I had saved my work first. So, once again, I lost everything and had to start from scratch. The thought of this had no appeal this morning, but now seems like a better time.
On Thursday, Jack had to be in the clinic for bloodwork. His doctors wanted to measure the level of vancomycin in his bloodstream and asked that I wait to give it to him until after his blood draw. So that's what happened. I hooked his meds up to both lines of his port, opened the clamps in the line and he was good to go. Or so I thought. Half an hour later Jack pulled the pressurized meds from his pocket only to notice that they were still completely full. He looked at me, said something was wrong, and I told him not to be ridiculous. After all, I know what I'm doing. Then he narrowed his eyes and asked if I remembered to open up the clamps on his port as well. Uh oh. I thought about this all morning. He is so in touch, so aware of what's going on, that he has the capacity to realize when something is not right with his care. Once again, I found myself in awe of his abilities. I corrected the problem, and half an hour later when he checked again, things looked as they should.
On Friday, BF had an awards breakfast to acknowledge the top performers in Continental Math League and New Jersey Math League. Jack was invited, and very much wanted to attend. Before we left the hospital, he got the okay from his docs to go. It was the first time he had been at school in exactly a month, and it felt good to be back. He received awards for both contests, had breakfast with some friends, took a group picture and came home.
Yesterday Jack went out to visit his friend, Ryan, for the first time since he's been home. I could tell that he was nervous, but Ryan's house is a home away from home for Jack. He worries about everything now and is fearful of getting sick and winding back up in the hospital. I hope as time goes by that he will regain his confidence.
It is wonderful having him home with us, watching him play ball in the yard with Alex and Rich, and eating all our meals together. It doesn't take much.
Thursday, May 25, 2006 6:33 PM CDT
Well, well, well. I see lots of my friends poking fun at me over school work on Jack's guestbook. Has Uncle Richie finally infected everyone? Not that it matters, I just continue to do what I will. Poor Jack is such a good guy that he simply goes along; it probably is easier that way. We'll just see who laughs last when he finishes up his schoolwork and has time to enjoy summer.
We went to the hospital this morning for bloodwork. Jack has been writing his questions down in my notebook all week, and he was ready for Dr. Brochstein and Nancy when they came in to see him. As he fired off each question, he noted their answers in my notebook, and was meticulous about making sure he understood what he was being told. I had to smile at this small, yet savvy boy taking complete charge of his health. No one will believe this, but I said almost nothing the entire visit. Now I hear many people laughing; I guess it's to be expected.
Jack's counts look down right marvelous. His WBC count is up to 5.4 again, well within the range of normal. This time he gets there courtesy of his newly engrafted stem cells. No help from Neupogen required. His hemoglobin is 10.6, just under the threshhold of 12, which is normal. The best news is that he is making platelets, and his count has risen from 40 on Monday to 63 today. He is still well below a bottom number of normal (135) but he is working his way back. There are no plans to transfuse him over the short term. I am giddy with the news, and relieved that he continues to make steady progress.
Yesterday was the debut of the "Walk Karen Around The Neighborhood Program" and we led off with my new friend, Bob Cohan. I am achy from too little exercise and too much time spent in Jack's hospital room. Over the course of an hour, we walked 3 miles. We had a blast together, tackling knotty problems related to life in Ridgewood, kids, and education. My creaky back and my dulled brain are grateful for time spent out in the warmth and the sun with a kind, new friend.
While we were walking, Melinda Sohval kept Jack company. When I returned they were sitting together at the kitchen table, Jack doing schoolwork and Melinda reading The NY Times. As I was saying my goodbyes, my friend Susan Corkery came by to see Jack. Everyone is dying to hug and squeeze him, but there is none of that for the short term. It is awkward and so unnatural for Jack. He wants to extend a greeting and then pulls back when he remembers he is not allowed to touch anyone. I am hoping it won't be long before we can lift some of these restrictions. He is at Day 20, and we have to make it to Day 45.
Susan stayed to help me with some paperwork, and then offered to go to the grocery store. Jack has been compiling a list of favorites, and asked if he could go out with Susan. Jack can be in the stores during off hours, so I let him go with the understanding that he shouldn't touch anything. It was wonderful for everyone. I got a ton of work done, Jack got to have an outing, and Susan had some time alone with Jack. On these days, I can see how lucky I am.
Tuesday, May 23, 2006 5:03 PM CDT
JACK IS HOME. Some of the sweetest words I have ever spoken. Jack finished his IV vancomycin by 11:30 AM yesterday, and we were ready to go. Dr. Gillio even came to see us in the morning so that we could get out early. But, of course, we hit several snafus, and didn't leave until about 1:30. We had to go through extensive discharge instructions, and Jack's transplant nurse, Nancy Durning, was stuck in the clinic. It was frustrating waiting for her and watching the clock, but it was so worth it. Rich made several trips to the car, bringing home all of the things we used to make his room feel like home. When Nancy was finished, we were free to hold Jack's hands as we left. It was emotional for me to walk out of that room for the last time, and I turned around and paused to reflect on the past 26 days, before walking away. Inside those four walls I watched as Jack went through the most grueling chemotherapy of his cancer experience. It was tough on him, but he made it through, sometimes with a faint smile on his face, always happy to see me return to him.
How can I explain what it feels like to have him home? It is the simplest of experiences, something that would not have registered on my radar screen two years ago. Yet it pervades my every thought today. I listen for his voice, see him on the front lawn with baseball glove at the ready, and enjoy his company at meals. God, it feels so good.
Last night, Mike Marion brought dinner for us. A wonderful homemade Yankee bean soup, with Portugese rolls and salad all packed in a cooler, sloshing around in the trunk of his car. Mike lives in the western part of the state, probably 90 minutes from Ridgewood, but that didn't stop him from cooking for us. It was a wonderful coincidence to have him here for Jack's homecoming, and the Yankee game to boot. He brought with him the trophy from The Cox Classic, which is engraved with the names of the annual winners. In 2005, when Jack spoke, it was Phil Simms and Kathleen Melli. Below their names is inscribed, "Jack Szigety MVP". Leave it to Mike to think of Jack.
Rei Kawahara bought a cake from Haagen Dazs, and we lit candles and had Jack make a wish. Mike's wife made homemade brownies, and it was a perfect celebration. Rei and I hugged and cried and hugged some more. Thank God for our friends.
So, today it was back to business for Jack. I dragged out his math book amid scowls, and we worked together on catching up. His math teacher, Courtney Pfeiffer, came by to see Jack, and brought his missing tests, quizzes and assignments. She told him that it would look really bad if the kid who missed months of school passed the rest of the class. He assured her that he would not be doing that much math, and then gave me his sternest look. We'll see!
Jack has received two doses of vancomycin at home, with Rich prepping and administering his meds. It is pretty cool to see the way they get delivered, via a ball pre-loaded with the antibiotic and saline and pressurized to infuse over two hours. He gets one for each lumen, keeps them in his pocket, and just walks around like that. No pole, no backpack with an infusion pump. It is amazing. Tonight, I take over, as Rich is headed back to work tomorrow.
Jack and I have a quiet day at home, doing schoolwork together and unpacking from the hospital. I am so looking forward to the day.
Sunday, May 21, 2006 7:38 PM CDT
Jack has had a terrific couple of days. My friend, Mary Lyons Kim and her sister, Kate Boswick, came to see Jack, at his request. He is achy from being in bed for 3 plus weeks and asked Kate to work out the knots in his muscles. Although he was sore,he smiled ear-to-ear as Kate worked her magic. All the while, Mary is giving him a foot massage. As I watch his face relax, and see the tension dissolve from his small body, I can't help but think about what a blessing these kind women are to him. Jack is so at ease around them, and so willing to reach out to them when he needs their help. I am just a bystander, but happy to be here.
Jack has been fever-free for several days now, and there are plans to send him home tomorrow. He will have to continue IV antibiotics through Saturday. The home care company will come tomorrow and teach me how to administer his drugs. Jack, Rich and I are ecstatic, after this long, eventful journey. I am emotional, thinking of all he has been through over these last 3 months. To me, God has asked an awful lot of a young, eleven year old boy. Jack has done such a stellar job. He has risen to the occasion each and every time, stumbling only now and again. With each bump in the road he has eloquently expressed his pain and fears, and ultimately gotten right back up to do what his doctors and nurses require of him. I am humbled by his strength, courage and dignity. I wonder if either of my other two children could manage it as well.
Today my friend, Maggie Sisco, and her blond beauties, Maclaine, Brindley and Hollis drove me to the hospital. We spent several hours celebrating Jack's last night as a transplant patient. We had a picnic, made sorbet sippers and played cards together. Maggie and I began to disassemble Jack's room, taking down his posters, photos and cards in preparation for our exit. It felt glorious.
Jack's counts are bouncing around a little. His WBC count was 2.8, down from 3.8 yesterday. His hemoglobin was 9.6, up from 8.9 yesterday. Lastly, his platelets are holding steady at 42. All of this is normal, and Dr. Gregory has decided not to transfuse him before we go home. He will check in at the clinic on Thursday.
I am happy to be going home, happy to have my beautiful son with me all day, every day. I am grateful that Jack has made it through this ordeal intact. I know that despite all he has been through that we are fortunate. I ask God to continue to bless Jack, to keep him always in His sight, to guide him on the next leg of this incredible journey.
Sunday, May 21, 2006 7:38 PM CDT
Jack has had a terrific couple of days. My friend, Mary Lyons Kim and her sister, Kate Boswick, came to see Jack, at his request. He is achy from being in bed for 3 plus weeks and asked Kate to work out the knots in his muscles. Although he was sore,he smiled ear-to-ear as Kate worked her magic. All the while, Mary is giving him a foot massage. As I watch his face relax, and see the tension dissolve from his small body, I can't help but think about what a blessing these kind women are to him. Jack is so at ease around them, and so willing to reach out to them when he needs their help. I am just a bystander, but happy to be here.
Jack has been fever-free for several days now, and there are plans to send him home tomorrow. He will have to continue IV antibiotics through Saturday. The home care company will come tomorrow and teach me how to administer his drugs. Jack, Rich and I are ecstatic, after this long, eventful journey. I am emotional, thinking of all he has been through over these last 3 months. To me, God has asked an awful lot of a young, eleven year old boy. Jack has done such a stellar job. He has risen to the occasion each and every time, stumbling only now and again. With each bump in the road he has eloquently expressed his pain and fears, and ultimately gotten right back up to do what his doctors and nurses require of him. I am humbled by his strength, courage and dignity. I wonder if either of my other two children could manage it as well.
Today my friend, Maggie Sisco, and her blond beauties, Maclaine, Brindley and Hollis drove me to the hospital. We spent several hours celebrating Jack's last night as a transplant patient. We had a picnic, made sorbet sippers and played cards together. Maggie and I began to disassemble Jack's room, taking down his posters, photos and cards in preparation for our exit. It felt glorious.
Jack's counts are bouncing around a little. His WBC count was 2.8, down from 3.8 yesterday. His hemoglobin was 9.6, up from 8.9 yesterday. Lastly, his platelets are holding steady at 42. All of this is normal, and Dr. Gregory has decided not to transfuse him before we go home. He will check in at the clinic on Thursday.
I am happy to be going home, happy to have my beautiful son with me all day, every day. I am grateful that Jack has made it through this ordeal intact. I know that despite all he has been through that we are fortunate. I ask God to continue to bless Jack, to keep him always in His sight, to guide him on the next leg of this incredible journey.
Friday, May 19, 2006 7:29 AM CDT
We had the most amazing news from Dr. Gillio yesterday afternoon. His medical team is looking at every possibility to find the cause for Jack's fevers. He has had chest x-rays, cultures of blood and other less glamorous body fluids and even a CT scan. I can tell that Dr. Gillio is uncomfortable with these fevers because Jack's WBC has come up and he should be able to counter any infections on his own now. Yesterday the culture taken from the blue lumen of his med-comp port came back positive for a staph infection. It is terrific news, strangely enough, and I could see the relief in Dr. Gillio and Jack's nurse, Nancy Polifroni.
Unfortunately, the only antibiotic that works on this bacteria is our old friend, vancomycin. Jack remembered all of what his nurses and docs said when he got this drug the first time. He asked Dr. Gillio and Dr. Boscamp to give him Tylenol and Benadryl before starting the drug. He also asked that they slow the infusion down so that the drug is administered over 3 hours instead of one. I think that Jack has a shot at interning under Dr. Boscamp as soon as he is well!
He started the drug last night, without complications and is fever free today. Dr. Boscamp came to see Jack yesterday afternoon, and explained in detail what was happening, and how everything finally makes sense. With this bacteria growing in Jack's port, it gets reintroduced to the bloodstream every time the port gets accessed and used. I think that's why he gets fever and then it is resolved by the antibiotic, only to reoccur. Dr. Boscamp said that Jack has to get this antibiotic for the next ten days. Of course, it comes in pill form, I say to Dr. Boscamp. No such luck, it has to be administered via both lines of his port to ensure that the infection is rooted out at its source. I tell him that Jack cannot stay here another ten days, and he suggests that we might be able to administer it at home. But, it is too early to have those conversations. Jack has to be well for a few days first. We can wait.
I almost forgot to update his counts. Jack's WBC count is down to 2.0. Dr. Gillio said that this is normal, but I forgot to ask when it will start back up again. His platelets are up from 41 to 47 and that seems positive to me. I thought they would drop again. Maybe his platelets are finally starting to recover and rebuild from his infused stem cells. Last to report is his hemoglobin which is down to 9.6.
The infectious disease fellow just walked in to examine Jack. She tells me that yesterday's culture from his blue line is negative. This was taken before Jack began the vancomycin, and I expected it to be positive. Now I am confused. We have this discussion about "what" works and we don't worry so much about the "why". He has been fever-free since beginning the vancomycin and that will have to be enough. It's just that I'm such a "why" girl and I am really tired of trying to get on a new page. Too bad for me, part two zillion.
Thursday, May 18, 2006 9:04 AM CDT
Jack had a rough night on Tuesday, waking every 45 minutes to an hour. A painful headache marked the beginning of a new round of fevers. His temperature topped out at 103, and eventually broke in the early hours of the morning. These fevers are exhausting for Jack and wreak havoc with his hydration. At some point his nurse put up a bolus of fluids. I'm not sure what this means exactly, but I think the fluids move at a higher rate and have some added ingredients. Sad to say that it has been explained to me a number of times and I still don't get it. My brain is crusting over from too little sleep and too much new information. Today Jack has been here for 21 days. It feels endless.
Yesterday Jack's counts were WBC 5.4, hemoglobin 8.4 and platelets 53. Today his WBC count dropped to 4.0. Rich tells me that this is because he did not get a shot of Neupogen yesterday, and this was expected by his medical team. I will ask Dr. Gillio when he comes to see Jack. His hemoglobin came up to 10.9 and his platelets are 41. He will probably need platelets in the next few days, and I am grateful to Barbara and everyone who has agreed to donate.
Alex is home sick today, and I feel bad that I cannot be home to take care of him. It is hard for Kate and Alex, being on their own for so much of Jack's illness. When Jack is home, things will be better for all of us, I am sure. Despite fending for himself so much, Alex had great news this weekend. He has been intensely preparing for a state-wide quiz bowl competition in Somerset as part of Skills USA. The Bergen County Academies' team was the youngest competing (four freshmen and one junior), and they still took third place. Alex is sporting the most beautiful bronze medal, and I am so proud of him for his hard work and accomplishments.
Jack has begun working with Chris Wallace on an English and a Social Studies project here in the hospital. Initially, he was reluctant, but now he seems to enjoy their time together. I am grateful to the Tomorrows Childrens Fund for making it possible for Jack to have Chris' help. I am absolutely wiped out and I think I'll do some light reading before Jack wakes up. Kelly Coakley bought "Marley and Me" for me and I have just begun it. The subtitle of the book ,"life and love with the world's worst dog", gives me an idea of what is in store. Sounds like a canine version of life with Jack.
Tuesday, May 16, 2006 6:36 PM CDT
Jack's counts continue their climb back up. This morning his WBC count was 5.2, well within the range of normal! His hemoglobin is 10.6 and his platelets are 114. He got a transfusion late last night, and I am hoping that they were the very same ones donated by our friend, Liz Louizides. Liz is a famous (at least to us, and her family) radio personality for ABC. If Jack starts writing and speaking really well, I think we'll have our answer.
Last night Jack spiked a fever of 105.9. This was registered by our own Nurse Dad in between the vitals taken by the staff. The nurses placed ice on Jack's neck and hips, and cool towels on his forehead and stomach. His fever came down to 103. Who ever thinks of a fever coming down to that level?
Each day Dr. Halpern comes to visit Jack with one of Jack's clinic nurses, Carly or Noreen. They never miss a day, and Jack is always happy to see them. I know how tight their schedules are, yet they always make time for Jack. On one of their very first visits, I showed Dr. Halpern and Carly how to play SET. Little did I know how competitive they are, and I ended up having to separate them and take the cards away. This proved to be a great distraction to Jack, who was intriged by this new side of his medical team.
I spoke with Dr. Halpern this morning, and he was totally on top of Jack's status, despite the fact that he is not responsible for Jack while he is on transplant service. I feel blessed to have this warm, compassionate and talented physician in our lives right now. Over the past eighteen months, he has become as important to us as Jack's pediatrician, Dr. Stoller. We all know how I just plain love that woman.
It is quiet in Jack's room now. Rich gave him his eleventh shot of Neupogen, and hopefully his last. We will know more tomorrow. I like the feeling. Jack looks good, and has not had fever all day. I am hoping for a quiet, uneventful night. One can always dream.
Monday, May 15, 2006 9:37 AM CDT
On Friday, I got a call from Jack's friend, Jen, from the YES Network. She had received an e-mail from Rich saying that Jack's counts were taking their sweet time coming back up. Jen and Mariano Rivera try to keep tabs on Jack, and Jen said Mariano was upset to hear the news from her. He wasn't feeling well to begin with and the Yankees had a game that night. So, yesterday, in the clubhouse, she was reluctant to bring Jack up again. But Rich had already e-mailed Joe, Jack's buddy from security, to tell him the good news. Joe told everyone about Jack's counts,and this time it was Moe telling Jen about Jack! I absolutely love these guys for their devotion to Jack. He gets so excited when he hears from them or knows they are thinking of him.
It was a long night for Jack. First, we had a visit from Terry and Jay Egan. Terry brought Kate and Alex with her so they could spend time with Jack. Of course, Alex and Jay, being testosterone-riddled 14/15 year olds, wrestled each other to the ground the entire time they were here. The rest of us tried to step over them in some kind of a double-dutch foot routine. Terry showed up dressed like a marshmallow Peep, and was actually surprised that none of the kids wanted to be seen in public with her. Just when you think things can't get any more peculiar. Kate handled all of this by attempting to keep Jack company, and attack the mountains of homework she is working on. I am amazed that we didn't get thrown out.
Jack finally fell asleep around midnight. His temperature was 101.3. At 2:30 AM it had spiked to 104.1. He was frightened, and it took some time to calm him down. His nurse said that she would be back to take his vitals at 3 AM and again at 4 AM. His fever broke at some point (hard to get the details straight), and he was drenched in sweat. I changed his clothes and sheets and he fell back to sleep. I did not. Most of the night I lay awake listening to a book on tape, and keeping my eyes on Jack.
An hour ago he developed shaking and a tingling in his legs and arms. The resident came to see him and said that this is normal, but they are ordering new cultures and a chest x-ray.
His counts continue their journey back to normalcy. His WBC count is 2.6, hemoglobin 10.0 and platelets 17. Dr. Gillio will probably give him platelets today.
This morning Magistra Carroll called Jack to give him an update on the goings-on in Latin. He spoke to her and each of his classmates before they all sang "The Hat Dance" song.
Jack loved it.
Sunday, May 14, 2006 3:27 PM CDT
I got my Mother's Day present early this morning, at 6:05 AM to be exact. Jack's nurses go through the same routine each morning, relative to his bloodwork, and I know just when to expect his counts. Yesterday was a tough day. His counts didn't budge, staying at .3, and I began to worry that his stem cells might not find their way home. Engraftment should take place on Day 7 or Day 8. Last night I lay awake thinking of possibilities, not probabilities. It is certainly possible, if not probable, that Jack could have a bizarre, unlikely outcome. Before Jack's initial diagnosis, I found great comfort in numbers. But those days are long gone now, as Jack, time and time again has defied the odds. His chances were 8 in a million that he would get this disease, 2 percent that he would not be cancer free after 4 courses of chemotherapy, 15 percent that he would relapse, etc. This is such a difficult position for me to parent from. By nature, I am not a worrier. Those days, too, are long gone. I am forever looking over my shoulder now, and wonder how I will learn to live this way. Anyway, I digress.
So, I didn't sleep too well last night, and called the nurses' station at the hospital at 6 AM. I didn't want to wake Jack, but I had to know. Coincidentally, Rich was walking by and they gave him the news, and then put him on the phone with me. Jack's WBC count has begun its rise, spiking to .8 this morning. I wept uncontrollably, thinking of Jack. He is in sync with my mood, my feelings, and I know he sensed my apprehension yesterday. Today he is ecstatic. I hear it in his voice. It feels like the personification of a giggle. He wishes me a Happy Mother's Day, and tells me that he feels lucky to have me for his mom. I tell him that we are quite a pair, he and I.
Before I sat down to write this entry, I read Jack's guestbook. Thank you to all of you for your kind words. You touched my heart deeply, and I am grateful. A special thank you to Rich for being my partner in all of this. It takes a unique grace to stand firmly next to a tornado throwing off gale force winds. You have the deepest roots of anyone I know.
One last medical note. Friday night Jack's fever climbed to 102.2. Yesterday morning it was normal, but Dr. Brochstein didn't want to take any chances. He started Jack on vancomycin, a broad spectrum antibiotic. In a matter of minutes, Jack began to scratch at his head and face, causing white welts to appear on his scalp. Immediately, his nurse, Laurie, called Dr. Brochstein, and they slowed down the rate of infusion, and gave him a dose of Benadryl. By then, his face became bright red around his forehead, eyes, nose and mouth. I am told that this can happen, and has been named red man's syndrome. Next his lips began to swell, and Laurie asked about his throat. That was it. Laurie stopped the medication, and hooked Jack up to a monitor. It took a while, but Jack gradually returned to normal. More fun for everyone in the daily adventures of Jack Does Hodgkin's. Future episodes promise to be equally eventful. I will be reporting from the Rest Home for Crazy Mothers.
Today, Kate and I have been working for hours on Jack's website. We have been uploading pictures from his long and illustrious journey. You can view some of the new photos, but it will be a couple of days before it is done. Keep checking. It will be worth the wait.
Yesterday, we had a wonderful visit from Nadine and Lou Dubrosa, and their adorable daughters, Maddie and Fiona. They brought Jack an endless supply of amazing handmade hats, including an elephant, a shark, a clown fish, a dolphin, an octopus, etc. Prepare to see Jack sporting some of these beauties around Ridgewood. Lou is a big Rangers fan and loved the Mark Messier skyway, until he got thrown into the penalty box for checking his daughters. This seems like behavior that Lou picked up from hanging around Crazy Uncle Johnny, the sports lunatic. Game over.
Friday, May 12, 2006 9;00 PM CDT
I have reasons to be both happy and sad today. Happy first. I came home from the hospital yesterday to a spotlessly clean house. "Get The Job Done" Del Vecchio, known to everyone else as Barb, organized another cleaning crew to set things right in the Szigety home. No short order given that I have been out of commission for the last two plus weeks. I have focused all of my energy on Jack's medical care, and have let everything else go. It shows, or more accurately, showed. In comes Kelly Coakley and her mom, Bebe, along with Yvonne Francis and her mother-in-law. How does this happen? My friends are dragging their folks out to clean, and these amazing women just go. You gotta love it! Joining them are Traci Tummillo, Susan Macchiarola, Elena Dieseldorff, Linda Moran, Bonnie Malajian and Mary Lyons Kim. Rich is at home watching these women and he absolutely doesn't know what to do with himself. He decides to go out and buy coffee and donuts. Smart guy. Barb tells me that she and Kelly have purchased new sheets for every bed in the house, and Bebe has paid for them. It is a wonderful treat for me, and I slept so soundly last night. Thank you to all of you, from the bottom of my heart. It brought a smile to my face to see my home sparkle again, and to have a sense of order in the face of such chaos.
Now for the not so happy news. I was really hoping to see a spike today in Jack's WBC count, but it dropped from .3 to .2. We are going in the wrong direction. I was setting my sights on a .7, but Dr. Halpern said that we shouldn't be discouraged. This is all normal, and we just have to be patient. I can do that. So we wait, and I hope that we have something by Mother's Day.
Today Uncle Jimmy came to donate platelets, and brought my mom, Nunu, to visit. Now Uncle Jimmy is no Uncle Richie (there is an absolute limit of one per family), but Jack is genuinely happy to see him. Me, too. Jimmy brings news of my nephews James and Andrew, and my niece Victoria, and his crazy wife Carol. Every time Aunt Carol plans to visit, one of her kids catches some cootie illness, and she gets banned. Carol is Jack's godmother, and wants so much to see him. In our family, Aunt Carol is the female equivalent of Uncle Richie - loony and lovable.
Not surprisingly, Uncle Jimmy gets turned away at the blood bank. His veins are too narrow. Lately, it that seems that all of Jack's donors are leaving without being able to give. Today, Bob Sohval was 20 minutes into his donation when the machine failed. In his e-mail to Barb, I could sense his frustration and disappointment. So, Jack was transfused with platelets today and we didn't have any banked. No big deal.
Tonight, as I am writing, Sherrill Masi comes in to visit with her three boys. They all look terrific, and regale Jack with stories about things that are happening in their lives. I am tired now, and Jack needs my help. Next time I write, I hope there are exciting developments.
Thursday, May 11, 2006 8:00 AM CDT
It is Day 6. Jack's white blood cell count is .3. The bottom threshhold number for normal is 4.5. After transplant his number stayed consistently at .1. Things are beginning to bubble and brew, I hope. Here's how the process works. The high-dose chemo has wiped out Jack's bone marrow. Without the infusion of his stem cells last Friday, his body could never recover. This rescue takes about 7-8 days, as his infused stem cells find their way back to the marrow. Then they engraft and begin to multiply. I am on the edge of my seat waiting for the numbers to tell the story. His stem cells can grow up to be any kind of a blood cell they choose to be. The guys first up are the white blood cells (WBC), next are the red blood cells, and finally his platelets. Once engraftment occurs, things happen quickly. Tomorrow his WBC count might be .7, and Saturday 2.something. His blood gets drawn each day at 5 AM. Details to follow tomorrow morning.
His first transfusion of this hospital stay happened on Sunday. He got both blood and platelets. Today his counts are borderline, and I think Dr. Gillio will probably transfuse him again tomorrow. Thanks to everyone who has donated blood products for Jack. When he is transfused, each bag has a bright orange tag, announcing that it has been donated especially for him. The privacy laws don't allow us to know who has donated the blood, and Jack and I spend a great deal of time sleuthing it out. We know donation date, we know blood type. Mrs. Del Vecchio helps with the rest. These are the things we entertain ourselves with during these long days inpatient.
Last night was a rough night for Jack. He had an unmanageable amount of stomach pain, and it kept him awake and struggling. It is contagious, I think, and I am in pain along with him. He will not take the morphine, so there is a lot of alternative medicine happening here. I am pounding on his back, to get a burp up. We are walking the halls to relieve the gas, using Tums for heartburn, heating pads of warm compresses for stomachaches, etc. This morning my head pulses, and my body aches. I am too old for this.
Today we will get a visit from Katie Cammann and her mom, Karen. Katie had a transplant just like Jack's on February 3rd at Memorial Sloan-Kettering, and has been helping me find my way through this. She came to us through a colleague of Woody Waga's, and we are glad to know her.
Jack is well enough to start back on his academic studies. Of course, I am leading the way with pre-algebra, and Jack and I are having riveting conversations on the hierarchy of numbers. Just what does constitute the difference between integers and whole numbers, you ask? Jack can help you out now (not you, Uncle Richie. No one can do that).
There is a whole army of people who will be helping Jack make up the work he has missed. Chris Wallace, a former social studies teacher at The Bergen County Academies, will work with him here in the hospital. Then Pat Weeks from BF will come every afternoon when he comes home. In the mornings he will spend time with three retired teachers from Travell, Kathy Shambura, MaryAnn Kwiatkowski and Diane Paoli, as their time allows. We are blessed to have so much help from so many wonderful teachers and friends.
Having the opportunity to think about Jack's studies makes me realize that we are approaching the end of this leg of his journey. Once his counts are high enough Jack will begin daily radiation therapy at Memorial Sloan-Kettering. That presents a whole new set of challenges, but we have time.
Tuesday, May 9, 2006 9:21 PM CDT
It is late and I am tired, but I know everyone is anxious for an update. It is Day 4. The clocks all get reset on the day of Jack's transplant, that being Day 0. I told one of his nurses that being a numbers person, I find this a bit crazy. Is it really possible that nothing he did prior to his transplant counts for anything? We both laughed at the notion.
Jack is doing remarkably well this week. I am in complete and total awe of his resilience. He has mouth sores, heartburn, and a sore throat, but none of it dampens his enthusiasm. He is alert, gracious and upbeat, despite his circumstances. God, I love this child.
Last night he had a taste for my homemade quesadilla, at 7:40 PM. I called my friend Monica, to see if she had an unopened package of cheese, because the dietician worries about mold developing on any foods Jack might eat. She rushed it over. I warmed the tortillas, layered cheese, refried beans and sliced olives, and had those quesadillas cooked and ready to go in no time. I covered the skillet, drove to Hackensack, and they were in his mouth, all toasty and warm, by 8:20. He was happy and eating. Life sure is good.
Jack has had three fever spikes since transplant. Everything shifts into gear the first time this happens. We went for a chest x-ray at midnight. Cultures of his med-comp port were taken, as well as blood work and urine specimens. Everything has come back negative. More good news. These tests don't get repeated until his fever spikes to 101. Today he hit 100.8.
Jack has only had one dose of morphine early on for the pain. The side effects were so unpleasant that we decided to go a different route. Last night he used "magic mouthwash", which is some brew of benadryl, lidocaine, bicarb, and some corticosteroids, I think. Rich said that it worked fine, and Jack was happy.
On Sunday, Uncle Richie and Aunt Joann came to see Jack. Before we went for a walk together, Jack had to put on a mask. Uncle Richie asked the nurse for another mask for me. When she said that I didn't need a mask, he said "Have you seen my sister?". This made Jack and Auntie Jojo laugh, and the nurse a bit nervous. When I told her that it was okay, she laughed, too. Uncle Richie is such an idiot. We went to the Messier skyway, where Uncle Richie tried to hit his wife and me with a hockey stick and then a puck. He laughs louder at his own bizarre humor than anyone I know. We made our way to the family lounge, where Uncle Richie purchased ridiculous amounts of junk food for Jack, and we played a game of SET. All of this wore Jack out, most of it by just being with Uncle Richie. Tell me about it.
Yesterday, my friend, Sherrill, came to spend the morning in the hospital with Jack and me. She has been through this experience with her mom and husband, and has so much to give. Nevermind the fact that she is one of the most nurturing people I know. Combine that with the fact that she loves Jack deeply, and you have the recipe for relief. Into the mix comes my friend, Mary, all set to give Jack a foot massage. He smiles from ear-to-ear. It is contagious; I feel the same way, just watching him with her. Today Mary tells me that she loves my kids like her own, and could absolutely take them in, if anything ever happened to Rich and me. I believe her, and when I tell the story to Alex, he agrees with me. He is 14 and male, and still he can see how much she loves him. I am startled by his grasp of her importance to us.
I have been home for 24 hours, the longest I have been away from Jack since he relapsed. It has been good for me to catch up a bit at home, yet I miss him deeply. His voice on the phone, soft and sweet, melts my heart. He tells me how much he misses me, but wants me to stay home tonight to sleep. I will take Kate and Alex to school in the morning and be at the hospital by 8 AM. I can hardly wait.
Sunday, May 7, 2006 7:07 EST
On Friday afternoon, Jack got a visit from Deirdre and Wyatt Imus. With the Radiothon behind them, they had time to spend with us. Jack perked up for the first time in a couple of days when he saw Wyatt. I was so happy to see him talking and engaged. Wyatt brought Jack a drawing of a horse that he had done, and asked Jack about coming to The Imus Ranch this summer. Up to this point, I have not been able to get him to show any interest. But, as I watched Wyatt and Deirdre talk about it, I could see the first sparks of possibilty. Jack told Wyatt he was nervous about riding, and Wyatt offered to be his personal coach. He helped Jack get over his fear of falling off the horse, and Jack seemed to relax a bit. Deirdre told him that even she was nervous when she first learned to ride. It also helps that one of Jack's Advance Practice Nurses, Carly Cord, would be there the same week. Carly is very much in tune with what Jack is thinking, and has helped him through tough times in the clinic on a number of occasions. So he would have friendly faces to look to. Even Wyatt's nanny, Sarah, who remembered Jack from his speech, said she would be there to make him feel at home.
So Jack asked Deirdre what it was like. She told him that when he arrived at the airport, there would be a Hummer to take him to the ranch. That first night the kids get to go The General Store and choose their cowboy gear from head to toe. Authentic boots, jeans, and cowboy hat included. The kids spend most of the week riding, and doing chores around the ranch. I've seen the setting, and it is a beautiful place. I hope Jack will consider it.
The transplant has caused changes for Jack. His taste buds have been affected, and eating feels very strange to him. It is not painful, and it does not make him nauseous, but he is not comfortable eating. When I gave him a bite of pizza, he said it had no taste. Same for Mrs. Cohan's wonderful chicken soup. Uh oh. The texture is off, too, and he does not like the feeling of pasta in his mouth. I am worried, and even a little bit angry with Jack. I pulled out my best sales pitch and explained why eating was so important. We talked about doing what it takes to get out of the hospital as soon as possible. He would not budge, and I responded by scowling at him. Talk about two crazy people squaring off. I knew that my best move was to leave before I did or said something stupid. Been there before. So I came home and slept for part of the day yesterday. I feel more like myself, but not by much. What do I do today? Normally, I would go right back to the hospital. Today, I am not so sure. I will call Jack's room and see what he wants.
Saturday, May 6, 2006 8:50 AM CDT
The transplant went well. Dr. Brochstein came by at around 10 AM with the technicians from Progenitor, where Jack's stem cells were being cryo-preserved. They came with the equipment to thaw three small bags of his stem cells in a water bath. When they reached the right temperature, Dr. Brochstein was ready to begin. As time went by, Jack became more uncomfortable, and moaned softly from time to time. At the end, beads of sweat appeared on his face, and Rich brought a wet towel for me cool him off. The whole process lasted under an hour and I was glad to be done.
While Jack was undergoing transplant, Dr. Brochstein asked me about my journal entry from Saturday, April 29. He expressed concern over my questions regarding differences in the BVAC regimen from the University of Iowa vs Hackensack. He asked that I update Jack's web page when I had time to read and review the journal article that Dr. Gillio gave me on Tuesday. I showed him the web page where I got my data, which was titled "Patients with lymphoma who failed on induction therapy" which I thought applied to Jack. He explained that the web page I should have viewed was titled "Patients with Hodgkin's disease in relapse". This morning I read both, and they coincide with Dr. Brochstein's handwritten notes. I hope this clears up any confusion.
Friday, May 5, 2006 4:53 AM CDT
I can see it. Things have begun to bottom out for Jack. My body hisses and crackles with the tension of what these next ten days will bring. I wonder how I will keep it together, knowing I have nothing left. It has been two and a half months since Jack relapsed, since his PET/CT came back positive. There is not a day that I don't replay that phone call with Dr. Halpern in my head. In slow motion, I pick up the phone, register his voice and glance at the clock. It is too early to hear good news. Only bad news travels this fast. I listen to the cadence of his speech, halting and uncertain. I can actually feel the pain in his voice. I am aware that what he is telling me is bad, but I cannot process actual data. I do not understand, and ask him to wait so I can write. This helps me to catalog the facts, but the words blur on the paper, and it takes several attempts before I truly recognize what has happened. It was February break for all three of my kids, and I remember Kate quickly registering my pain. I hear her ask Jack to go upstairs with her, and I go into the basement, into the farthest reaches of the house and stay there. She comes to me, and simply asks that I wait to tell Jack, wait until I am calm. She knows nothing but what she sees on my face. It is enough. She is just sixteen, but wise and selfless beyond her years.
I am at my breaking point, and I genuinely don't know what to do. Today is Jack's transplant, and I should be happy to be here, yet all I feel is dread. Dr. Halpern always tries to put a positive spin on things, but there is no coloring the events of the next ten days. They will be the worst days of my life and Jack's, he tells me. How will I do this, how will I stay strong for Jack, in the face of his pain? I think about the Blessed Mother so often these days; I pray to her for strength. Today nothing comes to me, today I feel so empty, and I am afraid that I do not have the strength to bear his pain. Here's my latest burning question. Did someone edit out all the painful scenes with Mary in the Bible? Where do we see it documented that she kicked the crap out of the Pharisees for villifying her only child? How about Pontius Pilate? Did she open up a can of whoopass behind the scenes? I'm thinking yes, but no one had the nerve to write it into the whole story. This leaves a big niche market open for me. The Bible is the best selling book of all time. My next project - rewrite the Bible from a woman's perspective. On your bookshelves six months after my release from the mental hospital.
Sometimes I feel better when I write. Today is one of those days. I feel a small reserve of strength building up. It is enough to get me through this morning. I guess that this will be a good strategy going forward. Maybe now I must be satisfied with getting through the very next challenge, and not over thinking the days to come. It is absolutely not my style, but I will try, yet again, to reinvent myself.
Today is Cinco De Mayo. Today is Jack's second birthday. My amazing friend, Marisa, brought a sombrero for Jack to commemorate this day. She created a banner for the brim that reads "JackStrong, JackFuerte, JuanFuerte". It makes everyone laugh. It sits on top of a monitor by the head of his bed. He said nothing to her, just gave us a weak smile.
Speaking of which, Jack is uncharacteristically quiet. He has developed a tingling in his mouth, which I am sure is the precursor of these horrific mouth sores. I noticed that his face was rounding out, and I now know that he is retaining water. His hydration is backing up, and the docs worry about concentrations of something in his body. It is difficult for me to understand, but I will ask again today. He needs more hydration, but also something called lasiks (not sure of spelling) to flush this water from his system. It seems to me that one medical intervention fixes a specific problem, only to cause another. I will learn more today.
The Radiothon is off to a good start. Rich and I watched it this morning with Jack, and we heard Deirdre, Don and Dr. Boscamp mention him several times. It was fun for all of us, and brought a small smile to Jack's face. Then John Ferguson, the CEO of the hospital, came by to see Jack with Dr. Boscamp. Jack really enjoys celebrity status here.
Mike Marion also came up with Donna Cox, who was scheduled to be on the air with Mike and The Mad Dog later in the day. Rich made arrangements with Mike for us to go out to lunch, and it was nice to get away from the hospital for a little while. Marisa joined us and we talked about our times at AT&T. At one point, we all worked for the company in different departments. Those days are long gone now.
The big event of the day happened at noontime, when Mike Francesa and Chris Russo came to see Jack with Deirdre Imus and David and Alice Jurist. I know that Jack was happy to see them, but he said almost nothing the entire time they were there. David kept telling Jack that he could ask the guys any question about any sports figure. He smiled and said not a word. It broke my heart to see him this way. If Jack were well he would have been bursting with excitement and energy. Then Mike told Jack that he had a gift for him, and pulled out a game ball from the 1999 World Series, signed by series MVP, Mariano Rivera! Jack's whole face lit up, and he clutched that ball the entire time Mike and Chris were there. Rich and I are so grateful to them for spending time with Jack, and helping him put another chunk of this hospital stay behind him.
It is time to get ready for the hospital. Happy Birthday, Jack.
Wednesday, May 3, 2006 9:00 CDT
Jack is through his last chemo drug. He has handled it all with the grace and courage that has come to define him in my eyes. I am relieved that this round (it is his ninth) has been relatively uneventful. Thank you, God, for giving me a pass, I really needed it.
On Monday afternoon Deirdre Imus came back to see Jack. I am very touched by this kind woman who has taken such an interest in my son. She brought with her Dr. Boscamp, Head of Pediatrics. Jack heard him speak at the dedication, back in December, and remembered him for his sense of humor. Deirdre bought Jack a book written by Jorge Posada. It is a favorite of her son, Wyatt's, and she knows how much Jack loves the Yankees and Jorge, their catcher. I am trying to find a quiet moment when I can read it to him. The book tells the story of Jorge's life-long love of the game. It was a very thoughtful gift.
Jack has had many visitors these past few days. Rose, Anthony and Christina Boniello just back from London, came bearing chocolates from Harrod's. Jack and I enjoyed listening to stories of their adventures, and we all played a game of SET, courtesy of Mary Condella. I am still terrible at this game, but I'm working on it.
Jack's crazy Aunt Jean also came with yet another game for his PSP. Each time she walks into the room, he looks at her like a love-sick puppy. To him, she is the perfect woman - all candy and video games. Uncle Richie is waiting for her to resort to cold hard cash; nothing would surprise me. The thing about Jean is that she is shameless in her zeal to keep Jack from going under. On this day she brings another PSP game and a movie. He continues to stare at her as if she were a love goddess.
Yesterday we had Mary Lyons Kim and her sister Kate come to see us. I absolutely love these two. Never in my life have I missed having a sister (Uncle Richie was a big sissy when we were kids and made a pretty good substitute) until I met these amazing women. I told Mary that Jack needed slippers for the hospital, and the next thing I know, she shows up with sandals (too late in the season for slippers) that Joanne Zellers has purchased for Jack. Kate came with the supplies to rub out all the knots in my back, and didn't let up until I felt better. Then Rei Kawahara joined us. She is making one thousand paper cranes with her son, Yuki, for Jack. It is an age old Japanese tradition, and they are supposed to bring health to the sick. It is important to hang them over the bed, right next to his head. Kate, with the skill of a seasoned nurse, released the brake on Jack's bed, and I climbed up on a chair, and hung the first beautiful chain of birds.
Jack needs to get out of bed each day, and get some exercise. This makes him very cranky, and I'm an easy target. I dragged him out of bed and we all walked the halls together. In the course of our stroll, he told me that he had no idea I could be so mean. I asked him where he's been for the last 11 plus years. He gave me his grandest crabby face ever. It produced my best smile of the day.
Mary Lou Fulford came when Mary and Kate left, bearing a Haagen Dazs milkshake for Jack and a Sudoku/Math article from the NY Times for me. We were both thrilled with our gifts. Then Lesley Bruno from Public Relations came and we all talked about her time as a student at BF. I am always happy to see her.
Tomorrow is the first day of the annual Radiothon that Don Imus does to support Tomorrows Children. Last year, Jack was on the air with Mike and The Mad Dog, and had a ball speaking with them. Jack and I are hoping they will stop by for a visit before they go on the air. Dr. Halpern came by to see Jack and told us that he heard Imus talking about Jack on the air this morning. I wish I had heard it. Annie Campbell, from Public Relations, is going to try to get a tape for us from MSNBC.
Donna Cox will be on the air at some point, and is planning to visit with Jack. Donna was married to Steve Cox when he lost his battle with cancer at the age of 32. Jack met Donna last September when he spoke at The Cox Classic, the golf charity that was begun by Steve's friends to honor his memory. Over the course of the last 16 years, almost 6 million dollars has been raised for various charities, including Tomorrows Children. Jack is very taken with the stories he has been told about Steve, and is anxious to spend time with Donna. When he met Steve's dad, Henry, last year, he was flush with pride when Henry told him that Jack reminded him of Steve. In conversation later that day, Jack told me that Henry said he was proud to know him, and he thought that Steve would feel the same way. Jack met lots of celebs that day, but it was his conversation with Henry that stayed with him. We will see Henry again in September, when Jack hits the first ball at The Imus Teed Off Challenge at The Cox Classic.
Tomorrow promises to be a busy and exciting day.
Monday, May 1, 2006 7:10 AM CDT
I am here at the hospital again. Jack is just waking up, and I am trying to convince him to work on his mouth care. He goes through this process four times a day, in an effort to keep his mouth clean. When the mouth sores come, it is really important to prevent infection from taking root. Mouth care is our only protection, and I want Jack to develop really good habits now. He has agreed to let Katie, his favorite nurse, do this for him this morning. I am relieved.
Today is another full day of chemo for Jack, but then we begin to wind down. Tomorrow he has one more dose of cytarabine and on Wednesday a single dose of cytoxan. This drug has me paying attention, especially after Jack's experience with BCNU. Thursday is a day of rest, and then the transplant happens on Friday, Cinco De Mayo. His blood counts are beginning to drop as a result of all the chemo and he is sleeping more. I am happy to sit by his bed and listen to him breathe.
We have taken some terrific pictures this past week, but have not been able to upload them to Jack's web-site yet. However, Mike Marion has put many of them on the Cox Classic site, and you can view them at www.coxcharityclassic.com. Just look for the piece on Jack, and click there.
I am so tired, and will try to catch up on my sleep while Jack is napping.
Sunday, April 30, 2006 10:05 AM CDT
I came back to the hospital around noon yesterday. Jack was resting comfortably, and Rich said he had an easy night. Friday night Tom Coakley came to keep Rich company, and brought with him baseball cards from his youth for Jack to look through. They are here, waiting for Jack when he is up to it.
The anti-nausea regimen that we put in place for his salvage chemo is working nicely for this high dose chemo as well. I was somewhat worried that the high doses would wreak havoc, and Jack would be incredibly sick. What a relief that he is not terribly nauseous.
Jack is struggling emotionally today. He feels as though he has been here forever, and it is less than three days. I am trying to teach him to look at what he's accomplished and not what still lies ahead, but it is hard, even for me. Each day he needs to get out of bed, walk the floors of the hospital, and spend some time sitting in a chair. When we went for our walk, his pole tipped over, going from linoleum to carpet. I was trying to keep him steady and catch the pole on its way down. I was able to right everything just before it hit the carpet. That was enough for me, and we are back in his room. He is sleeping softly in a chair as I write.
Yesterday, Jack's fifth grade teacher, Shauna Stovell, came, and we were all happy to see her. She brought news of Travell, and in our time together I realized how much I miss seeing her. She is responsible for keeping Jack up to speed on his work last year, despite being so ill. He went into middle school well prepared because of her.
When Shauna left, Uncle Richie came by with my mom and my nephew, Michael. Never a dull moment with Uncle Richie around. We had lots of laughs, mostly at Uncle Richie's expense, but that can't be a surprise to anyone by now.
Last night was exhausting, with Jack waking up every 70 minutes to give back all this hydration they are pumping into him. I am looking forward to going home today to sleep. Rich will be back by 1 PM.
One Final Note: Jack is featured in an article on latinosports.com. It is a very sweet write up on his time at Yankee Stadium Tuesday night.
Saturday, April 29, 2006 6:48 AM CDT
When Jack fell asleep early Friday morning, I went back to my research to see if I had missed something on BCNU, the chemo drug that caused Jack such excruciating pain. I could find nothing to explain his reaction. Then I remembered that my brother, Ray, found a web-site from the University of Iowa that detailed the exact administration of drugs for the BVAC protocol that Jack is following. Jack's pediatric oncologist, Dr. Halpern, always gives me the printed sheets from The Children's Oncology Group, so I can calculate his exact drugs using this fabulous calculation called meters squared. It is based on the square root of his weight in kilograms times his height in centimeters divided by 3600. In this way I know exactly what to expect. It calms me down. But I never got the printed protocol from Dr. Brochstein, just handwritten notes on a calendar. When I compared what he had written, vs what I read on the web, I calculated that Jack got 30 percent more BCNU than Iowa was prescribing. I freaked out.
Kelly Coakley called after reading my journal entry and we decided together that Jack should not get another drug until I talked with his docs. Furthermore, I created a table that compared Iowa with Hackensack for the rest of his meds so I could see, up front, what differences there were, drug by drug. Consistently, Hackensack was giving as much or more meds. I needed answers, and went out to find the nurse manager, and bumped into Dr. Halpern. He looked at everything with a fine tooth comb, and we reviewed his drugs line by line. He explained that Jack would most likely have reacted the same way at lower dosages of BCNU; he called it an idiosyncratic response. He also said that sometimes hospitals adjust drug dosages, based on their own experience and success, so he wasn't worried about the differences between the two hospitals. Also, he told me to remember that this particular protocol has been used in Hackensack for many years. It is known by the pharmacists and nurses, as well as Jack's docs. The likelihood that an error was made was small. As always, he put my mind at ease. Ultimately, however, we both agreed that the transplant docs were the ones to talk with. I waited for rounds, and then spoke with Dr. Gillio, Jack's other transplant doc. He understood my concerns, and said he would speak with Dr. Brochstein on the genesis of their BVAC protocol. He believed that it came from Memorial Sloan-Kettering, where he trained with Dr. Brochstein and Dr. Pecora, who is on the adult transplant service here. Dr. Gillio assured me that the dosages they were administering for Jack were accurate. I am relieved, but anxious to talk with Dr. Brochstein on Monday.
I am alone now. Kate and Alex are sleeping upstairs, and Rich is at the hospital with Jack. I am disoriented, confused about the day, uncertain about how Jack made out last night. I want to call the hospital, know, in fact, that I should, but I am afraid. Afraid to wake Jack up, but more frightened that he had a bad night and Rich is trying to protect me by not calling.
It has been good for me to come home, although it was so hard to leave. Jack is always in tears, I am torn by what is right. Rich is left feeling distraught. It is best to go quickly.
Today, Kate is taking an exam for the Columbia Science Honors Program, which we all forgot about. I will try to get her a ride into the city and back with a classmate. She is embarrassed because she was scheduled to work and feels she is letting Eisele's down. I agree, but have less time for social convention these days. She can blame me, although she won't.
Yesterday, David and Alice Jurist came to see Jack. They are two of the founders of the Tomorrows Children's Fund and had a meeting at the hospital with Deirdre Imus. Jack and Deirdre spoke together at the dedication of the new children's hospital, and it was nice for Jack to see her again. David took a picture of Alice, Deirdre and me with Jack, and told him he was labeling the picture "Jack with 3 powerful women". I was proud to be part of that group. Jack was less impressed, but smiled nonetheless.
I came home from the hospital yesterday to find a beautifully wrapped present at my front door. Kate picked it up, and gave it to me to open, but I was exhausted, and went straight upstairs to sleep. When I woke up she was rattling the box and begging me to open it. The contents shifted, and it was somewhat heavy for a small shirt box. When I opened it, there were 13 packages of bubble gum inside in assorted flavors and brands. A note attached to one package said "Spit Not Included". I laughed out loud thinking of my kind friend, Marianne Helmstetter. That morning I posted on Jack's journal that my heart was held together these days with spit and bubble gum. In an attempt to keep my heart from breaking, Marianne decided to stock up my supply of bubble gum! I was blown away by her thoughtfulness, nevermind her speed. Throughout the day, I would think of her gift and smile. So many times during Jack's illness all of you have picked up the pieces for me and my family, have kept us strong for Jack. I wonder, time and time again, how I will ever be able to adequately demonstrate my gratitude. It will come to me, I am sure.
Friday, April 28, 2006 5:48 AM CDT
It has been a brutal beginning for Jack. When his nurses came in to access his med-comp port to start his hydration he flat-out refused. Throughout these last few weeks, Jack and I have spoken a number of times about the fact that this cycle would be very different from his recent experience with the salvage regimen. I explained that while the dosages would be much higher, he would also have a break between the different drugs. Jack saw that as an opportunity to be without the IV pole. Psychologically, he needs to know that he can walk away for a bit. He interpreted my words as meaning that he could leave the hospital, take a walk, eat at a restaurant, etc.. This, of course, is not the case, and the realization put Jack over the edge. He took his rage out on me, convinced that I had lied to him. My heart is held together these days with spit and bubble gum, the cracks getting wider and deeper. It was hard for me to help Jack through this, because I am weakened by his tears. It is so hard to stay strong and to stay on task when I fel so distraught.
As time went by, his nurses became more anxious to get started. Jack would not budge, and in tears, I asked them to leave the room. Tears spilled down Jack's tiny face, and he told me how hard it was to begin again, how the next month seems too much to take on. I held him close, said he had every right to be angry and told him it was crunch time. Cancer is a tough and formidable disease. We were sure that Jack was cured last fall, after 6 cycles of chemotherapy and daily radiation for 6 weeks. We were wrong and now it is time to drag out the elephant gun and stare this sucker down. I told him that we could walk away, but he quickly said that only an idiot would do that. We both looked around for Uncle Richie.
So, he got hooked up at around 6:30 PM and his first chemo drug went up at 8 PM. Rich and Kate came by with some pasta for Jack, and he ate a nice meal. While they visited, I brushed up on the immediate side effects of this drug. Although Dr. Brochstein went through his concerns, I think it gets kind of watered down. I like (poor choice of words) to read the literature prepared for health professionals so I get the real deal. When Rich and Kate left at 10 PM, I thought I was prepared. Jack was sleeping quietly, and I was assessing how quickly his hydration was moving, so that I would be awake the first time he needed to empty his bladder. The Yankee game just finished up, and I was enjoying Moe's save when things started to unravel. Jack began to writhe in pain, as the chemo hit him full force. His body was flush and his heart racing, but I was prepared for that. I quickly called the nursing station and was told that Jack's nurse would be in when she finished some paperwork. This went over very badly, as you might guess. Meanwhile, Jack is in screaming pain, and I am absolutely terrified. The resident on call has known Jack since he was diagnosed in 2004, but has no experience with this drug. She orders morphine for the pain, and quickly calls Dr. Brochstein, who tells her not to worry. This can happen. The morphine kicks in, and I am holding Jack in my arms, with my hands placed tightly on his temples. The pain and tension leave his body, and he slowly falls asleep in my arms. We are huddled together in this small bed, and I am so relieved that he is out of pain. To me, it feels like the descent has begun.
Thursday, April 27, 2006 5:05 AM CDT
Things have changed quickly for Jack. Tuesday afternoon I spoke with Dr. Brochstein at length regarding Kepivance. The hospital has serious reservations, and will not administer the drug for several reasons. Neither the pediatric pharmacists nor the nursing staff has any experience with it, and there are concerns about side effects, both long and short term. It has not yet been approved in peds, but what really bothers them is that there's no study data regarding its use. Dr. Brochstein said he didn't just give this lip service (I'm sure he knows that would never fly with me) and I believe him. I am, however, anxious about going ahead without it. I worry about these sores and Jack's ability to eat, drink and swallow. The thought makes my stomach queasy and my head pound.
So, today is the day. There is no reason to wait, so Jack will be admitted this afternoon, and his first drug, BCNU, administered this evening. Please pray that this is the last chemotherapy cycle that Jack will ever have to endure, and that the transplant cures him.
Now for the fun stuff. We did go to Yankee Stadium on Tuesday evening. When we arrived, Ray Negron met us at the press gate with Carl Ferraro, the CEO for Spalding. He had this enormous Spalding backpack for Jack and 2 baseball gloves. One was a pro glove designed by Robinson Cano, and the other was a signature glove with Cano's name on it. Carl gave Jack a pen so that Rob could sign the glove for him. Jack was on the field for about 2 hours, from 5-7, although he did not really visit with the players. There was an all Spanish interview with the Latin version of ESPN. Jack forgot all of his spanish, and just waved. Magistra Carroll has turned him into a true latin student, and there's no going back. He had another interview, in english, with someone from WFAN. Rich and I were watching all of this with Kate and Alex from seats right next to the dugout. At some point, Ray Negron left the field with him. Where were they going, you ask? Up to see George Steinbrenner, who wanted to meet Jack. Yes, Jack was hangin' with George in his office. Who else did he visit with up there? Yogi Bera! We have the most hilarious picture of the 3 of them hanging on the fridge. Hopefully Rich can post it on the web-site.
When they came back, Jack went to sit in the dugout with David and Alice Jurist, two of his favorite people from Tomorrows Children. At some point Derek Jeter walked by and extended his hand for Jack to shake. The he decided to stay and talk with Jack for awhile. With his arms around Jack's tiny shoulders, photographs were taken. I hope one finds its way back to us. On Saturday when they were in the clubhouse together, Derek asked if he was staying out of trouble. Jack smiled and said not really. Derek said that that was what he figured. When they were sitting in the dugout together Jack said that Derek asked him if he was at least trying to stay out of trouble. Jack said he was, but wasn't being too successful. I saw him rub Jack's bald little head and laugh. Jack was beaming.
The entire time Jack was on the field he kept hoping to catch Mariano's eye. But he was in the outfield, and never saw Jack searching for him. Joe, one of the security guys that Jack spent time with in Baltimore, promised to get him to Moe at the end of the game. We never made it. All three of my kids were wiped out, and we left before the game was over.
The pre-game ceremony for Robinson Cano was really sweet, and Jack was thrilled to be out in the infield of Yankee Stadium. There he was with Cano's arm around him, smiling happily with his new friends from Spalding and Ray Negron. He tells me that his name was on the board in big lights, but I never saw it. My eyes were trained on him. I think I will call the YES network to see if they can get us a tape.
Monday, April 24, 2006 8:53 PM CDT
I am playing the research game again. It is an old, familiar favorite. This time the topic is pediatric use of Kepivance, a drug just recently approved in January, 2005 by the FDA. Use is narrowly restricted to adult leukemia and lymphoma patients undergoing bone marrow/stem cell transplants. I am hoping to learn enough to help Dr. Brochstein feel comfortable in using it for Jack. In addition to our old nemesis, nausea, Jack will have to contend with serious mouth sores when he undergoes high dose chemotherapy next week. Kepivance has received wide acclaim in helping with this problem. It works by thickening the lining of the mouth, esophagus and stomach, and is administered for three days prior to chemotherapy, via his med comp port. My friend, Nadine Flynn, found a 23 page document produced by Amgen, the drug manufacturer, for pediatric use. Rich printed it out and I am good to go.
I am also trying to get a web cam hook-up for Jack when he is in the hospital for a month. His nurses feel that he will not be up to any "active learning", but could watch his classes via the plasma TV in his room. I think it would be so comforting for him to be able to connect with his classmates and teachers each day. The hospital seems ready to go on this, and I will meet tomorrow with Jack's principal, Tony Orsini, to determine whether it is something they will be able to do.
When I was standing in the wind tunnel at Yankee Stadium last Saturday, I met Ray Negron, Special Assistant, Baseball Operations, for the New York Yankees. He was talking with Jack in the clubhouse, and then with me about a children's book he's written that will be published in September. The story is about a young boy undergoing treatment for cancer, and the importance of staying strong. He said that so much of it would have meaning for Jack, and when I read it, I realized he was right. During our conversation, he told me that Robinson Cano, who is featured in the book, will be on the field at Yankee Stadium tomorrow with Jack's pal, David Jurist, in a pre-game ceremony. He asked that Jack join them to represent all of the kids from Tomorrows Children. Hopefully, I can pull it all together tomorrow. The Yankees, twice in one week - amazing!
Saturday, April 22, 2006 6:28 PM CDT
It has been a jam-packed and exciting three days. Our trip to Rhode Island on Thursday was long and tiring, but so worthwhile. Simply seeing Dr. Schwartz smile at Jack when she caught sight of him in the waiting room was enough for me. She spent several hours with us, and I had the pleasure of listening to her wisdom. Her words were reassuring, and I am confident Jack is on the right path. It does so much to ease my mind. As always, she had some suggestions that she wants me to follow. These regard radiation to his abdomen. Dr. Brochstein wants to do the radiation after high-dose chemo and she is okay with that, even though the latest clinical trials do it first. Because this was the site of relapse, she wants it irradiated as soon as possible, within 2-3 weeks of being released from the hospital. Second, she wants an extended involved field, wider than he had for his chest and spleen. I will take her requests to Dr. Wolden at Memorial Sloan-Kettering when he is ready.
The road trip was better than expected thanks to the PSP for Jack, and my friend, Kate Boswick, for me. Neither of us could have chosen bettter travelling partners. Jack zoned out in the back seat, math and vocab books forgotten, and I had the pleasure of Kate's company. She has worked on a transplant service before as an RN, and had so much to add in my conversations with Dr. Schwartz. On our way home, we stopped at a small coastal town that Kate's husband, John, selected for us, after much conversation by cell phone. We ate dinner at a waterfront restaurant - scallops for Kate & me, chicken for Jack. While we were waiting for our meal, we did some brain teasers that Jack got, courtesy of The Busy Fund. They were tough, but we were persistent and in the end, we prevailed (although not by much). Speaking of playing games with Jack - I brought on the trip a card game called SET that Jack got from my friend, Mary Condella. Jack and Kate played in the waiting room at the hospital while I did paperwork. From the outside looking in, this was one tough game. Judging from Kate's win pile vs Jack's I determined that she felt as I did. We decided to pool our resources, and attempt to beat Jack. Anybody know how this turned out? Probably everybody. Jack whooped us good, and then we quit. Only thing worse than a sore loser is two of them.
Yesterday Jack took his bike to school for the first time this spring. Other than the bald head, it felt so ordinary, so right for a sixth grade boy to do. Waving goodbye, I forgot about his cancer for just a bit. I spent most of the morning on insurance and medical paperwork, and then went out to breakfast and for a walk with my friend, Kelly Coakley. More normalcy. Things are looking up.
Last night was the healing service at church for Jack. My friends Mary Pat Phillips, Diane Lynch, Rose Boniello, and Paula Metzger did an amazing job organizing this for Jack. Father Tom's words were inspirational and very much focused on Jack's strength in dealing with adversity. He even raised his forearm in unity to show us his newly acquired JackStrong band. The church was filled with so many of our family and friends, and I count myself blessed to be part of this Christian community.
Lisa Gibble and Kelly Coakley organized an ice cream social afterwards, and I got to visit there with almost everyone. Woody Waga and his daughter, Lauren Schecter, had JackStrong bumper stickers made and handed them out to everyone.It was a spectacular evening, overflowing with restorative powers. Thank you to everyone who made it possible. It meant more than you know to every member of my family.
Today two really exciting things happened. First, in today's mail was a letter for Jack from Rudy Guiliani. They met last September at The Cox Classic when Jack spoke about his battle with cancer. Of course, Crazy Uncle Richie was in the audience, and Rudy thought he was Jack's dad. Jack was out on the golf course with Mike Francesa and Chris Russo choosing a raffle winner. So, Rudy asked my brother to let Jack know that he hoped he would never have to run against him. I always liked that guy. He definitely knows a worthy adversary!
Then we went to Yankee Stadium so Jack could reconnect with the players he met last fall. For those of you who don't know, Jack spent a week at Camden Yards with his absolute favorite sports team. Sonny Hight, VP for security, gave Rich his card when their week was done, and told Rich to call him when we were coming to the stadium anytime in the future. So, he did, and Sonny got us clearance to see the team.
That trip to Camden Yards was the experience of a lifetime for Jack, and he forged a tangible bond to Mariano Rivera. They spoke once in the hospital, but Jack was so happy to see him in person. Me, too. He told Jack to stay strong, never,ever give up, and to remember to pray. Then he looked into his face and told him that he loved him. Jack beamed back at him, hanging on his every word. I was in tears, but clear-headed enough to ask for a hug, which I got.
Rich, Jack and Alex got to go into the clubhouse where very handsome, fit and well-paid athletes were in various stages of dress. I got to stand in this wind tunnel of a corridor, in bone-chilling cold waiting for them. Almost the same experience, except not. Everyone remembered Jack, and he spoke with Derek Jeter, Johnny Damon, Jason Giambi, A Rod, Mike Mussina, Hideki Matsui, Robinson Cano, Don Mattingly, and a million other people. All the while I am standing in the wind tunnel. Not that I'm bitter.
When they come out, I get to walk out onto the field with my guys and visit with Jerry, one of the security people we met in Baltimore. Alex and Jack are sitting in the Yankee dugout, slack-jawed. I am thrilled to see them so excited. They are eager to show off the balls that the players have signed. When the game is about to begin, Jerry asks to look at the tickets we have, then asks us to wait just a minute. He comes back with tickets to sit with the players' families, right behind home plate, in a covered area. He is worried about wind and rain for Jack. It is frigid, and after an hour, Jack and I go to find Rick Cerrone, and we watch the game from his office. He brings hot chocolate for Jack and me. We thaw out before heading to the press box to meet Michael Kay. He knows Jack right away, and tells Jack that he was sitting next to Mariano on the team bus when he called Jack in the hospital. We also get to reconnect with Jennifer, from the YES Network. I met her in Baltimore and was impressed with how kind she was to Jack. Now they are hugging and Jack is smiling. I get pictures of everyone. We go back to Rick Cerrone's office and Alex joins us. Rick stays for a bit and then takes the boys for something to eat. They come back with hotdogs, sodas and smiles. It is a fabulous day and the Yankees win 6-1.
Thursday, April 20, 2006 5:32 AM CDT
We are preparing for our road trip to Rhode Island. Jack is sleeping in, and I am running around the house collecting scans and binders of medical research, test results, treatment plans, etc. When all of this began, back in October, 2004, I had one small binder. My highly organized friend, Barbara Del Vecchio, helped me separate everything with a series of tabs, indices and cross references. So, no matter what I needed, it was at my finger tips. It has served me well, even while the volume of data has grown five-fold. Now my information is separated by volume, my binders numbered one through five. They are sitting by my front door, along with my notebook and an inches thick stack of PET and CT scans.
I have packed nothing else for the trip. I have given no thought to tasty snacks to keep Jack fed, or books and games to keep him entertained. My wonderful friend, Mary Lyons Kim, has taken care of the snacks. She has a keen sense of what Jack likes, and has filled a cooler for him to make his way through. He will be happy to see this gift from her. Next up is for me to compile interesting things for Jack to do in the car. I will get the math and vocabulary books ready! (Almost-illiterate Uncle Richie laughing somewhere in Brooklyn sometime today).
Seeing Dr Schwartz today is the last thing I need to do to make myself comfortable with this process. We took Jack to see her last March at Johns Hopkins when the cancer in his chest would not resolve. Jack's docs at Tomorrows Children felt that the radiation would do the clean-up. His radiation oncologist, Dr. Suzanne Wolden, at Memorial Sloan-Kettering wasn't so sure. Neither was his medical oncologist at Memorial. We called in Dr. Schwartz to help us decide. She has dedicated her life to pediatric Hodgkin's and was the author of the chemo protocol for the clinical trial Jack was following. We reasoned that if anyone would know about kids like Jack, it would be her. Our instincts were correct, and she was a wealth of information. My favorite thing about her is how thorough she is. I remember sitting in her office with her poring over my binders, and then going down to discuss his case with the radiology team reading Jack's scans. She would come back and ask the most detailed questions, and I knew that she had developed a strong understanding of Jack's illness.
At the end of the day she sat down to tell us that Jack was one of the worst responders she had ever seen. He absolutely needed more chemotherapy before radiation, to prevent a relapse. At the end of those two cycles of more toxic drugs, Jack was finally cancer-free, or so we thought. It would be just 10 short months before he relapsed.
The last couple of days have been a terrific change of pace for Jack. He went to school Tuesday afternoon and all day yesterday. He played baseball with his team the first night, and went out to dinner with Mary Condella last night. Of course, they squeezed in a quick shopping trip, and Jack was so happy with their finds. I can't help but smile watching the two of them together. They are an unlikely pair - Mary soft and thoughtful, Jack wild and energetic. For the millionth time, I thank God for my friends, and for the people in my life that help Jack endure this terrible ordeal. I wonder how I can ever repay so much kindness.
These past few days have been highly emotional for Rich and me. On Monday, we sat down for 2 1/2 hours with Dr. Brochstein and Nancy Durning, one of Jack's nurses, and asked all of our questions while Jack was in the apheresis lab. I had compiled a list 4 pages long. It was a very reassuring meeting, and I was impressed with Jack's latest medical team. Dr. Halpern is a tough act to follow, but Dr. Brochstein can hold his own, I am sure. I feel confident that Jack is right where he should be. That's saying an awful lot, because I was truly getting cold feet, after all of my research. Dr. Brochstein patiently explained those topics that were confusing, and even beat me to the punch on a couple of issues. I always like it when medical professionals are really well informed!
When today is done, Jack will be ready for transplant. He will most likely be admitted to the hospital on May 1st for 3 weeks. Next week he will have to visit the clinic a few times in preparation for his admission. My friend, Sherrill Masi, told me about a drug called Kepivance, which can help Jack manage the pain of his transplant. Dr. Brochstein has never used Kepivance, as it has not been formally approved in pediatrics, but is willing to work with his pediatric pharmacists to determine if it is safe for Jack. If so, he needs to get it into his system, via an IV, before the high dose chemo begins on the 1st. My friend Nadine, at Bristol Myers Squibb, is approaching this from her end, too. I hope we have as much success as we did with the anti-nausea regimen.
Today should be an interesting day.
Tuesday, April 18, 2006 5:02 PM CDT
Yesterday was a harrowing day. Not only did Jack have to be in the clinic for bloodwork at 9:00 AM, we also had to spend the entire afternoon with Uncle Richie. The day was doomed from the start. Based on his counts, the docs decided that Rich needed to give Jack another injection of Neupogen to move his stem cells from his marrow into his bloodstream. Jack greeted this news about like you would expect.
At noon we got word that the apheresis lab was running behind and our appointment was moved up an hour to 2 o'clock. We called Kate who was getting ready for lunch and picked her up for a bite to eat. Jack was really happy to see her, and it took the edge off a little bit. Kate has an instinct when it comes to her brother, and she knows how to distract him. I thank God for her devotion to Jack.
We arrived at the lab to be told that it would be another 20 minutes. The receptionist recognized Jack from his speech at the dedication of the new children's hospital, and I left him to chat with her. Meanwhile, Uncle Richie shows up at the blood bank with my sister-in-law, Joann, to donate blood and platelets, respectively. During a series of questions posed to him, Uncle Richie tries to convince the interviewer that he is not a blood relative,despite the fact that I am his sister. After much conversation (all of it tiring for the bloodbank employee), Uncle Richie accepts the fact that he is related to Jack by blood. They explain that he should donate after Jack's transplant, because blood relatives are a more perfect match. This becomes critical in the days after they reinfuse Jack's stem cells. Now, my sister-in-law, Joann, who is a PhD in psychology has been absolutely no help in all of this. They return the favor by turning her away. Her iron levels are too low, and she cannot donate platelets. I am not there but I believe that those bloodbank folks are happy to see Uncle Richie go. He is headed, like a guided missile, to the apheresis lab.
So, picture this, there's Jack, hooked up to this loud, whirring machine. Blood is moving out of one side of his port, into the machine, where his stem cells are harvested, and then back into his body through the other part of his port. I am there with my mom and Rich, when in runs Crazy Uncle Richie. Jack rolls his eyes, makes the attendant laugh, and goes back to playing PSP. Now, in this tiny room are Rich and me, my mom, Uncle Richie and Aunt Jojo. It is suggested that some of us might be more comfortable in the room next door. I believe they are talking to my brother. He believes otherwise, and I leave him to visit with Jack. As I am leaving Jack throws me a "please don't leave me with him" look, and then laughs. They are two of a kind.
The whole process takes almost 4 hours, and Jack is wiped out when we leave at 8 PM. There is an 80 percent chance we will be back tomorrow, and I feel bad that he has to spend another day like this. But, Jack continues to defy the odds, and I get the most amazing news early this morning. They harvested 3,500,000 stem cells per kg of his body weight, and they were shooting for a total of 3,000,000. I am so happy for his good luck, and it is an awesome way to start the day.
Next up is Jack's PET/CT scans. They have to start an IV in his arm, and it is painful. He is in tears, but it does not last long. We sit in a quiet room, and wait 45 minutes for the glucose infused with a radioactive isotope to make its way into his body. The scans take about an hour and we are done before noon. Jack wants to go to school, and I think it's a great idea. When I get home, there is a message from Dr. Halpern. I know the results are in and I am anxious as I dial the phone. It is fabulous news. There is no evidence of cancer in his body, and he is cleared for transplant! It is a wonderful day.
Sunday, April 16, 2006 12:08 AM CDT
I have finished my research in preparation for meeeting with Jack's transplant team tomorrow. Through the medical librarians at The Cancer Institute of NJ, Hackensack University Medical Center and Valley Hospital as well as my friend Nadine at Bristol Myers Squibb and my brother, Ray, I have compiled quite a reading list on relapsed Hodgkin's Lymphoma. Initially, the articles were confusing, but I have read each of them so many times that after a while you begin to understand. One of the things that is troubling me shows up in the pediatric vs. adult literature. While Autologous Stem Cell Transplant has been proven to be more efficacious than second-line chemotherapy in adults, it is not borne out in the pediatric literature. My timing in figuring this out is pretty bad. In many ways I feel like the train is leaving the station, and I'm having second thoughts about the destination. Part of the problem is that Dr. Brochstein, Jack's transplant doc, was off this week, and stem cell harvest is scheduled for tomorrow. Things are moving too quickly for me, as I tend to be a plodder. What I need to keep reminding myself is that I had these discussions with docs in 4 different hospitals when Jack relapsed initially. His medical team in Hackensack made the recommendation, Dr. Kamen at The Cancer Institute agreed as did Dr. Trippett at Memorial Sloan-Kettering and Dr. Schwartz at Brown. I am just getting nervous.
There's nothing to do but stop the train till I feel better. That's hard to do with cancer, because I feel a sense of urgency with this hideous disease. But, I know how I'm wired, know what it is like when I am uncertain. Time to take a road trip to see Dr. Cindy Schwartz. She will know how to help, and everyone could use a little diversion. So, tomorrow and possibly Tuesday, Hackensack will harvest Jack's stem cells. Hopefully, Wednesday he will have his PET/CT, and Thursday we will go to Brown. I pray that she can resolve this sinking feeling that is my constant companion.
Jack's apheresis tomorrow is a really big deal. All of the transplant literature cites a direct correlation between the volume of cells harvested, and the success of his transplant. Minimum numbers are 2 something something and maximum yields are 5 something something. I would quote the actual formula, but I believe I wrote the wrong thing down. My biggest concern is that Jack is considered heavily pre-treated, and that has a negative impact on yields. My stomach is in knots.
As I am writing, a beautiful black lab races through my backyard, and I run outside to try and grab her. She is very happy to see me, and runs inside the house. Our cat is very unhappy to meet her. I find her name, Shanna, and the phone number of her owners; I call and they are relieved and happy to hear from me. Shanna is well behaved, and I feed her leftover chicken. I wish my kids were here to meet her.
Josie Dvorken sent an e-mail containing the photos from our session with her. I cannot take my eyes off my beautiful children. Josie has captured their individual personalities in these wonderful portraits, and I am so glad to have them. How lucky we are to have her do this for us; I want to remember them like this. It lifts my spirits.
As I am writing, the doorbell rings again, and I think another one of Shanna's owners has come looking for her. I politely explain to this kind man that I have sent his dog home with his son, who was just here. He has no idea what I am talking about, as he is here to drop off a water botttle for Jack. As it turns out, it is James Fogg, the man who installed our water filtration system. He thinks, I am sure, that I am peculiar, but that doesn't stop him from staying for a visit. His wife, Joyce, is the school nurse at BF, and has taught all three of my kids. She had James install this system as a gift to Jack, and he is following marching orders by bringing this personal filtration system here today. He wants to make sure that Jack does not need to drink tap water, considering that his immune system is so compromised. I get the opportunity to speak with Joyce and catch up with her.
It is Easter Sunday afternoon, and I am alone at home. I sent Rich in to New York with the kids, so I could finish some work. It is time to join my family.
Friday, April 14, 2006 6:20 PM CDT
I have started this entry several times, but never got very far. Under the weight of Jack's illness, my family is coming apart. Being at the center of this perfect storm makes life unbearably difficult for me. Sometimes I need to opt out for a stretch of time to get my strength back. These have been 3 such days. We are better now, I am able to cope again. My mom and I discussed challenges we have faced in our past, and have compared Jack's illness to prior events. Never in my life have I felt a sadness so pervasive. There are days that it is crippling, and there is less and less time between the episodes of despair.
Yesterday, Jack's hemoglobin and platelet counts were low. He is not bouncing back as quickly as last cycle, because of the cumulative effects of the chemo on his body. After much discussion between the transplant docs and his pediatric oncology team, it was decided that Jack needed a transfusion of red blood cells. This went over like a lead sinker, and Jack blamed me. He took off for Lynn Hoffman's office. She has always been a safe haven for Jack, a true source of comfort when he is in pain. Behind closed doors, Lynn was able to bring Jack around, and I thought about how fortunate both of us are to have her in our lives. They returned to the clinic and we began to make plans.
Carly gave him the choice of getting transfused right away or waiting until today. His instinct was to bolt. I thought it was best to just get the thing done and have today free, but I didn't say a word. His extended scowl convinced me of my status as persona non-grata. Lynn and Carly worked with his Child Life Specialist and RN to convince him. After everyone agreed, I told Jack that I was proud of his choice, and happy that this would all be over. He asked me to leave and call his dad to be with him. I was devastated, but waited for Rich, and then quietly left.
Last night, in tears,Jack apologized. It broke my heart to see him struggling and in such pain. The thing that is so terrifying to me is that I know we have not hit bottom yet. We are still in descent, and I am not sure how much more of this hell we can take. I don't know where to put the pain.
Wednesday, April 12, 2006 6:25 AM CDT
The day began on a tough note for Jack yesterday. He is not sleeping well, and he wakes up very cranky. Normally, I can get him back to sleep by rubbing his back, but he is in pain now. Each night, beginning last Thursday, Rich gives him an injection of Neupogen, which is designed to promote the production of blood cells produced in the bone marrow. After a typical cycle of chemotherapy, it is the white blood cells that you are after. Now, in preparation for apheresis, it is all stem cells, and Jack's Neupogen dose has doubled to get the job done. Marrow is rich in several places in the body, specifically in the hip bones. Neupogen calls on these bones to work at Herculean rates, and the net effect is excruciating pain. I can only offer Jack a heating pad and some Tylenol. It is not enough. His despair is contagious and I have to watch that Jack doesn't see me upset. It is almost impossible to do.
Jack and I went, begrudgingly, to Pediatric Audiology in the late morning. We both know the drill and move effortlessly from one soundproof booth to the next, donning headphones and earplugs as we go. In a bizarre move that makes Jack laugh, I can recall the sequence of compound words that he is given, and start to rattle them off as he is listening to the audiologist, Megan. He is totally convinced that there is something wrong with me, and he turns his attention back to Megan. I attempt to fade into the background. Good luck.
We get really great news. Jack's tests look markedly better than December, and Megan feels that he did have a cold back then, which skewed the numbers. I am ecstatic and we leave as quickly as we came.
On our way back home, we decide to stop in at The Academies to see Jack's favorite Hackensack personality, Pat Cosgrove. She sees him pass her office, and heads out to the main office to greet us. Jack is so happy to see her, and they chat with several of the school administrators with whom Jack has become friendly. Next, it is over to see Rona Gabin, Kate's guidance counselor. Jack knows that she has the best treats in the school and he comes back with a bag full of candies. I give him The Stare, and Pat suggests that they leave quickly to get something healthy to eat first. It is off to the kitchen where a Culinary Arts class is in session. One of the students offers to make a Cuban roast pork sandwich, and Jack reluctantly agrees, as he is not a big pork fan. By association, I get one, too. I make a note to myself that where ever I go, things are always better for me when I am around Jack. The sandwich is amazing, stuffed with eggplant, roasted red peppers and pork.
While Jack is visiting with the culinary kids, I cross over to the biotech lab to stop in at my daughter's home away from home. Donna Leonardi, Kate's biotech teacher for the last two years, has offered to read some of the journal articles for me. Specifically, I want her to help me understand immunotherapy and monoclonal antibodies. She willingly takes my binder of research material, agrees to copy what she needs, and then give the binder back to Kate. It reassures me to have her help.
On our way home, I drop Jack off at his friend Brendan's house, and they watch the Yankees home opener together. My friend, Nancy tells me that she hears them laughing and having a great time throughout the afternoon. I am glad that Jack gets to do normal kid stuff, and happy that Mariano Rivera closes the game out with a win for Jack's favorite baseball team.
Last night we had a wonderful meal with the Hansens. The culinary kids made chicken soup with barley, salad and a wonderful loaf of homemade bread. While we were all eating that, Sharon heated up trays of saffron rice, marinated roast pork, mixed grilled vegetables and a corn salsa. For dessert Chef Brace prepared a homemade fruit tart. The meal was spectacular, and a perfect way to end the day.
Monday, April 10, 2006 8:12 PM CDT
The new picture was taken just before the boys got their heads shaved a couple of weeks ago at Salon Eliya. I absolutely love this photo because it captures the devotion of these boys to their friend. Jack is so lucky to have them in his life.
Jack slept in this morning and then it was off to the clinic for counts. He woke up well rested and eager to get the trip over with. It is a vacation week in Ridgewood and it's hard for him when all of his friends are away or enjoying the break at home and he is in the hospital. I totally commiserate with what he is feeling and that somehow makes it better. As happened last time, the nurses had trouble drawing blood from one of the two lumens (a stiff tube) in his port. This is not good, as both lumens will be used next Monday when his apheresis or harvest of stem cells is planned. So, blood is drawn from the blue lumen and we use some kind of blood thinner to correct problems in the red lumen. After an hour, the nurse tries again, without luck. The process begins again, and after another hour, the lumen is functional. Escalating melodrama averted.
Jack's counts come back, and they are not good. Any hopes of going to the Yankee home opener are dashed, but we both kind of expected that. Jack needs to stay out of big crowds, and away from young children. I will keep him here, and restrict visitors now. It is easier than letting him out of the house and having to grill prospective hosts, even though I am very good at that. Laugh all you like, Uncle Richie, but we all have our gifts.
Tomorrow Jack has to be back in the hospital for a visit to Pediatric Audiology. I made this appointment before Jack's relapse, and we are both annoyed that we have to go back so soon. Dr. Halpern said too bad. The drugs that Jack took for his fifth and sixth courses of chemotherapy permanently damaged his hearing, and he has to be monitored every three months. Last time, his tests looked bad, and his audiologist thought it might have been due to a cold. I am hoping things look better tomorrow. All of these small losses have a way of accumulating.
Also on tap for tomorrow is a meal prepared for us by the kids in the Culinary Arts Program at The Bergen County Academies. This is the academy that Alex attends, and he is so happy there. The last time, Pat Cosgrove, Kate and Alex's principal at The Academies, hand delivered an absolute feast. We will share the meal with the Hansens at their home if everyone there is healthy. Mike Hansen is one of Jack's favorite adults. Last spring when Jack was taking daily trips to Memorial Sloan-Kettering Cancer Center (MSKCC), Mike made the trip with him once a week. Mike always managed to find a way to make Jack feel special when they were together. While I was on the phone with Mike, working on plans for tomorrow, Jack had something he wanted to say. He asked me to tell Mike that he was really looking forward to having radiation again (this time to his abdomen) because he would get to be with Mike. Leave it to Jack to see the cup as half full. He amazes me. So does Mike.
Tonight I spoke with my friend, Dr. Peter Maslak, Chief of Hematology Laboratory Services at MSKCC (yes, he is a really, really smart guy and a bigshot in his field). I wanted to keep him apprised of Jack's progress and ask questions about the drugs on Jack's conditioning regimen. He felt, as did Dr. Schwartz, that the drugs were not a place to concentrate my efforts. He wants me to focus instead on the yield of stem cells from his apheresis, because there is a direct correlation between the volume of cells collected and success of the transplant. I am switching gears.
Sunday, April 9, 2006 8:37 AM CDT
My friend, Maggie is away on vacation with her family, and Alex offered to help walk her dogs. The only problem with this ambitious plan is that Alex is away on his confirmation retreat. You guessed it, add dog-walker to my skill set. Actually, this works out really well for me, because there is so little I can do these days to help Alex out of a tight squeeze. I am a small-scale hero again to my beautiful blue-eyed son. As an additional plus, these dogs are a riot, and I find myself twisted in their leashes and laughing at their antics. This morning I walked them at 7 AM, and returned to find Jack asleep in bed. As I write, he is breathing softly and sleeping peacefully beside me. Funny how things work out.
Before I left the hospital late Thursday night, I tried to think about how to keep Jack well and out of the hospital. His medical team's biggest concern was that he stay well hydrated and away from anyone who might be ill. To that end, I had the home infusion company bring back a pump and IV fluids. In that way, if Jack was sick to his stomach and couldn't drink, I was prepared to respond at home. It has been a seamless transition, though, mostly due, I believe, to the changes in his anti-nausea regimen. Jack has been alert, energetic and confident, so very different than last time he came home. It makes me feel powerful.
Yesterday, Mike Moran came again to help us with our relentless printer problem. This time he brought along his technically savvy friend, Bob McGowan. He was a poor substitute for Mike's son, David, but what can you do. In a very witty e-mail, Mike stated that this is a jihad for him, and he was determined to win (talk about kindred spirits). I listened to a medley of grunts and groans (even a little whining) from the family room as these kind men tried to help us out of a jam. It seems that they have put a band-aid on it for now, and will return later, when technical support is available from the print server's manufacturer. God I love my friends.
On the roster of entertaining activites yesterday for Jack was a tour of Bob and Barb Del Vecchio's stunning new home. Jack fell in love and is now trying to insinuate himself into their lives and home. Knowing all parties involved, I believe he has a real shot. He decided to stay to cook Palm Sunday dinner with Justine, Bob and Barbara's oldest daughter. Woody Waga called to say that he made chicken soup and wanted to visit with Jack. For his part, Jack refused to leave his new home, and I brought Woody to the Del Vecchio's along with his daughter, Lauren and granddaughter, Amanda. We settled in, a little too comfortably and for a little too long, for a visit. That's what you get, Barbara, for building such an exquisite home, and making people feel so welcome. It might be best to make advance plans for visitors who come unexpectedly and then refuse to leave.
I know this site is devoted to Jack, but I have to share some wonderful news. My oldest daughter, Kate, is a sophomore at The Bergen County Academies (Bergen County's answer to Bronx Science). She is part of a program called the Global Leaderhip Exchange in Biotechnology. As part of that academy, she is slated to finish high school at the end of this year. Next year all of her course work will be college level, and she will intern at least two days a week. She has worked hard to find an internship that meets her needs this summer, because she will have the opportunity to continue through the school year. To that end, she has had to write a resume for the first time. With Jack being so ill, I knew that I had to reach out to friends that could help. I chose well. Kate Boswick and her son, Aidan, stepped in to fill the void. While I was in the hospital with Jack, they picked Kate up, brought her to their home, and worked tirelessly to put together a resume that reflects my daughter's accomplishments. Resume in hand, Kate applied for an internship in the translational lab of Dr. Mehmet Oz, a well-known cardiac surgeon at Columbia Presbyterian Medical Center. She was told, well in advance, that taking students still in high school was not the norm, and that she would have to have unique skills to be considered. I guess they liked what they saw, because this week she was offered a position in the lab. I am so proud of this hard-working, earnest child, and grateful to Kate and Aidan for guiding her.
One last note regarding Kate. Yesterday she presented the results of her yearlong research on DMSO (whatever that is) at a science fair at NJ Institute of Technology. Rich tells me that she took first place in her category, and has been asked to present her work in San Francisco. It is so nice to have cause for celebration.
Today we will have an easy day. Jack will go out to visit with his friend, Connor. Kate is sleeping in, and Rich will attend Mass and pick Alex up from his retreat. I have some heavy reading to finish.
Friday, April 7, 2006 5:31 PM CDT
We are home, and it is glorious to be here. The house looks like a train wreck in my absence, and I could care less. Pretty scary thought for those of you who know me well. It truly is hard to see because I have so much research to review on Jack's upcoming transplant. In fact, I am taking a break from my current article "High-Dose Therapy and Autologous Hematopoietic Stem-Cell Transplantation for Recurrent or Refractory Pediatric Hodgkin's Disease: Results and Prognostic Indices" to update Jack's journal. It is an absolute page-turner, but somewhat anti-climactic for me, because I believe Jack will come through with flying colors.
I am a little stressed out because Jack will not be part of a clinical trial, as I suspected. The trial closed 2 weeks ago, and Dr. Brochstein will rely on a drug combination that he has used for the past 16 years. During my faux medical training, I decided that he should follow that protocol, whether or not we actively participated in the trial. One informative call this afternoon to Dr. Cindy Schwartz quickly disabused me of that idea. She agrees with Dr. Brochstein, and gave her blessing to his drug choices, of which 3 out of 4 are the same as the clinical trial. I will ask about the switch-up in the fourth when I see him on Monday. By then I should have privileges at the hospital (just kidding).
My youngest brother, Ray, is a scientist, and we got together briefly over the phone to discuss several journal articles. Ray has been reading with me since Jack relapsed, and has helped me to understand so much of what Jack is facing. Together, with Rich, we have come to believe that transplant is ultimately the right path for Jack. Now we will attempt to understand this process and how we can help Jack to succeed. There are 5 new articles to consider, and they are all as weighty as the one I referenced. I will pace myself over the weekend, and we will put our heads together before my next meeting with Dr. Brochstein. My brother keeps me strong.
You guessed it, now is the time in our program when we get to review the roster of fun and entertaining guests visiting Jack. David and Alice Jurist made a surprise visit, and rode up in the elevator with Sharon, Matt, Andrew and Reid Simoncini. To no one's surprise, Reid talked non-stop and charmed David. The Jurists have been instrumental in the design and construction of this magnificent facility, and they were checking to see that Jack was comfortable in his new digs. Reid surprised Jack with a $20 ITunes gift certificate for his IPod. Sharon told me that she had a lemonade stand for Jack and marched right up to passing cars to sell her drinks. I just love a kid with moxie. Then Matt and I talked about a Sudoku puzzle and strategies to solve them. Sharon stated the obvious and said only I could turn a hospital visit into a math session. Hello.
Lori Garrity came next with Brody, Tanner and Isabel. They brought individual Twizzlers for Jack (no germs here) and Advil for me. We were both thrilled. Brody brought Jack his baseball team uniform, and the boys talked about the upcoming season. They will play together on a team with many of their Travell friends. Lori and Jack broke into the Twizzlers and made a decent dent. Dr. Brochstein came by with Maureen and the Garritys took off for the skyway. Next up was Mary Lou Fulford, her son, Paul and Chris Roth. I do math enrichment work with the boys, and Jack and I decided to show them a website with amazing puzzles, using the plasma TV and a wireless keyboard. We chose an easy one, and collectively we did okay. It was fun to focus on something other than Jack's illness.
Then came Maureen Hommen and her boys, Kurt and Kevin, and Michael Schneider. They brought Jack snacks from their favorite local candy store, Wilkes. While we were visiting, Barbara Del Vecchio came with her daughters, Justine and Marissa and Tori Tucci. Barbara said that she began to ask for a pass, and the guard said "John Szigety, right". Time for everyone to head down to the skyway. God bless Mark Messier. Jack walked, but was extremely weak, and it ended up being a short visit. He was happy to climb back into bed.
Yes, hard to believe, but there's more. Last up were Dr. Kevin Emery and his son Collin. They were there to see Jack get unhooked; it was glorious. Annie Campbell stopped by and before long she and Kevin were talking real estate in Midland Park. I think Kevin found her a lead on a house.
Today Bob Cohan came by with his daughter, Hannah (Jack's special friend), with chicken soup for Jack. It was homemade by Hannah's mom, Bobby, and the enormous pot will keep Jack well for several weeks. They also brought Jack a Yankee poster, Jack's head on Derek Jeter's body. I knew it; I could spot that man anywhere. I told Jack we needed to get it framed, and shortly thereafter, Bob came back with a frame. Then he offered to run some errands, and I took him up on it. Another new friend; this is great.
Julie Ann Camporini came by with her homemade chicken soup. It came as a personal request from Jack because she was feeding him the hospital version which tastes like swill. Is anyone out there not feeling well? We can help.
Jack is having a marvelous first day home. He slept late, ate a big breakfast and lunch and went out for ice cream with Dr. Emery. Now he's at the movies with Rami Elsabeh and Matt Simoncini. It is great to be back in the "Wood".
Thursday, April 6, 2006 8:04 AM CDT
Today is the big day-we get to go home early this evening. It has been a torturously long 6 days, and we are both glad to head for home. This admission has been markedly better than the last and I hope we can say the same for our next time, but I doubt it. The only thing that I know is that I will continue to run interference for Jack in any way I can. I think it makes him feel better, just knowing that I am there to advocate for him. He looks so small and helpless in that bed.
The new hospital is spectacular. All of the rooms in peds oncology are private, and all have a window. These two things alone do so much to lift our moods. Then there is the plasma TV with a wireless keyboard so that patients can surf the web and e-mail. Jack has tried to IM his buddies, but we are not quite there yet.
Having a private room also makes having visitors so much easier, because you don't have the worry of disturbing others. That was definitely an issue last night when Alex's visit with Scott coincided with Kav's visit. What is it about 15 year old boys and enclosed spaces? It took me right back to the hair salon last week. Thank God for the Mark Messier skyway; the boys went down to play some hockey and let out some of that energy. Dr. Brochstein, Jack's transplant doc, came by to see Jack, and told us that he saw the boys in the hockey rink. He also said that he almost got hit in the face by a hockey puck, courtesy of Alex. Wonderful boy.
We again had a cast of thousands visit us, some in clear violation of Kelly's scheduling rules. Unorthodox do-gooders beware! First up was Jack's buddy from The Cox Classic, Mike Marion. For those of you just tuning in, The Cox Classic celebrated 16 years of honoring Steven Cox in September, 2005. During that time they have raised approximately $16,000,000 for charities, including The Tomorrows Children's Fund. God bless Mike for the work he does as director of the foundation. Anyway, Mike and Jack met last year when Jack was asked to speak at this event, and they formed a solid friendship. Mike has placed Jack's story on the web page for The Classic, right next to a photo of Tom Brokaw. For those of you that have not seen it, the URL is www.coxcharityclassic.com
Although Kelly has strict rules on visiting, she shows up whenever she needs a Jack-fix, which happened to be yesterday, as well as the day before.
Jack's Aunt Mary came next and spent several hours keeping the two of us company, and the room in neat order. Lots of clearing of tray tops and straightening of bed linens. She also brought Jack a photo collage of all of his cousins to keep by his bed. When Kate and Alex wanted to visit after school Mary picked them up, fed them dinner and brought them back to see Jack.
Then Liz, Emily, Julia and Gary Louizides found their way to Jack's room. Gary works for the hospital and dragged his family to the old building, thinking Jack was still there. So much for being in the know. It was great to see the girls and Julia worked very hard along with Ryan Phillips to get Jack on AIM through the plasma TV. No luck.
Ines Bunza, reading all of my journal entries, came with Chinese chicken noodle soup, which is a favorite of Dr. Bunza's. Jack had to agree and ate almost the whole quart yesterday. Her daughter, Catherine, brought Jack his choice of slurpees, cherry or pina-colada. Jack chose cherry and I had the pina-colada. Basically, the rest of my family is now in position to take Jack's cast-offs, as they happen.
At the end of the schedule were Patti Roche and the Kavanaughs. It was a very good day for visiting with friends.
Jack continued to do well throughout the day and had his nausea under control. We both had a decent night's sleep, waking several times for Jack to go to the bathroom. I am tired now but it is almost over.
I am going to leave you with the most exciting thought of the day. Rich and I have been working so hard to contact Mariano Rivera, Jack's favorite NY Yankee. For those of you who do not know, Jack spent a week with the Yankees at Camden Yards, last September. While he loved all of the players, it was Moe that he developed a real connection to. We have tried, through so many friends, to get word of Jack's relapse to Moe. Yesterday, Rich got the job done. He reached out to Sonny, from security for the team, and he promised to get word to Moe. Early last evening, the call came in from California, and Jack was ecstatic. They talked for some time and Moe gave Jack a number where he can be reached. He also hopes to call again and possibly visit Jack when he is in NY. I love that guy!
Wednesday, April 5, 2006 3:45 EST
I had touble keeping it together yesterday and my incredibly kind friend, Nancy Imperatore let me let it out with her. I had a good long, shoulders shaking, nose running cry and Nancy held my hands through all of it. The same thing happened this morning with my friend Carolina Rosen, and I am calmer now. She said that she understood how angry I am with God and suggested that we pray to Mary for intercession. The wisdom of women. Never in my life have I felt such bone-numbing despair and sadness. Keeping it together all day, every day is not in the cards, so I got to get it out where it is safe. Now I can be strong for Jack, and that is the most important thing in my life right now.
Speaking of Jack, I talked to him briefly about the transplant yesterday. At the beginning of treatment for his relapse,one of his nurses, Carly Cord, told Jack to focus on the day at hand and not to try and take the whole process in. So, I have given him an understanding of the salvage regimen, and stayed away from transplant. Now that has to change, and I began the process yesterday. It did not go well, because I have never mentioned that there is more chemotherapy involved. It was heartbreaking to see him so distraught, and I decided that his Child Life Specialist, Maureen McLaughlin, has to be here when we talk. She has always been the one to soften the blow when he takes bad news, and I need her help with this.
Now we can talk about fun stuff. Yesterday's cast of characters was diversified and fun. Kelly Coakley took an open slot and came to visit in the morning, as did Diane Lynch. Kelly was loud, as usual, and filled the room with her laugh. Diane stayed in character as well and was determined to speak in hush tones, so that Jack would continue his sleep. Yin and Yang, right here in Hackensack.
I already told you about my crying jag with Nancy, but seeing her really did brighten my day. So many of my friends and family have a habit of doing that; I am fortunate. In the evening, Ashley Berk came with news of Travell, and I was happy to catch up on the goings on there. Kate, Alex and Jack spent 10 years, collectively, at this school. It is a big change not to be a part of this community anymore, and I miss the staff, teachers and moms.
Last up was Carolina Rosen and her son Paul, #10 from the Ridgewood freshmen basketball team. Paul fed Jack the last of the chicken broth (he ate the whole quart, Melinda!)and then sat quietly with Jack as he slept. Carolina and I were not quiet. Before they left, Jack asked for something substantial to eat, and Carolina and Paul set out for Boston Market. Jack ate broiled chicken, potatoes, mac and cheese and cornbread. I got chills watching him eat. The best news is that he kept it all down. One bout of nausea early in the day yesterday and nothing since then. He is so pleased at the changes he has been able to make and it helps cement the thought that there is some of this that he can control. Pretty heady stuff.
One final note: Jack's new telephone number is 201-270-3885. He will be staying through tomorrow and would love to have visitors. Check with Kelly Coakley.
Tuesday, April 4, 2006 3:43 AM CDT
I cannot sleep. Jack is having the most awful night and needs me often. I finally figured out that it was easier to stay awake and at the ready. He gets so upset if he needs me and I cannot respond through the haze. It is better like this. I have used the time to reply to e-mail and to think about platelet and blood donations, which will be coming up this weekend.
Yesterday Jack ate for the first time since Saturday, thanks to the wisdom of Melinda Sohval. Putting her nursing skills to good use, Melinda decided that Jack needed a strong dose of "jewish penicillin". She set off for The Kosher Nosh and hand delivered a quart of chicken broth with her kids, Daniel and Sophie. I felt bad that she went to so much trouble, but she was right. Jack took almost a third of it with some saltines and has kept it all down. It is a turning point for him, he's eating and keeping it down. I am ecstatic and grateful for the kindness of this new friend.
Speaking of nausea, Jack has responded well to the changes we have made in his meds. Yesterday he did not get sick at all, and the day before, just once. This is a vast improvement over the last time he was admitted, and I am glad that all my efforts have yielded such positive results. It makes me feel less powerless.
We are moving to the new hospital this morning before 7 AM. I am excited, Jack could care less. All he really wants is to go home and he says that to me over and over. Perhaps we will do the same thing we did last time and leave a night early with pumps from the home infusion company. It is nice to have options.
The meeting with the transplant team was informative and somewhat depressing. Jack has so much left to do, and it won't be easy. Yesterday, I spoke to a young woman, named Katie Cammann, who underwent transplant in January at Memorial. She is willing to share her experience with me, and it is helpful to have someone to talk with. She has a caringbridge site like Jack and she suggested that I go in and read her journal entries, which I did. It gives me a bit of a roadmap to follow so that I have a sense of what to expect. I am not happy. What else is new.
I had another fun day of visitors yesterday, beginning with my friend Jean. In an effort to keep the gravy train chugging, she bought Jack a new game for his PSP. While she was here Uncle Richie called and asked if she brought Jack gold bullion this time. I think he is a very bitter and cranky man. Ryan Phillips came with his Uncle Marty and Jack actually woke up to visit with his friend. Marty brought his well developed sense of humor and made Rich laugh. They talked about golf for an excruciatingly long period of time. The only thing more boring than playing that game is listening to guys talk about it, Then, spotting an opening in the schedule, Julie Ann Camporini made an impromptu visit. Jack ate a little pasta for her and then was knocked unconscious by the golf talk. I totally got it. Jack wanted a Slurpee, and spotting an opportunity to stop this golf nonsense, I sent Marty to 7-11 with Ryan.
Next up was a classmate of Jack's, Jack Allard and his mom, Genny. Genny and I play softball together in the same league, she with significantly more skill than me (that's not really saying too much). Jack A helped Jack S with his Slurpee and Genny and I had a chance to talk. It really does help to pass the time.
In the anchor position this evening were Michael and Cheryl Kavanaugh and Dr. Paul Arilotta, Jack's principal from Travell. Cheryl and Paul chatted about people they knew in school districts in Hasbrouck Heights and Wood Ridge. Michael was stuck talking to me because Jack never really recovered from Marty's visit. He tried to be polite, but it's not easy. Jack is waking up and I am called to duty.
Monday, April 3, 2006 7:48 AM CDT
Jack's success in his battle against nausea was short-lived. He began vomiting in earnest at about 10 AM yesterday morning and continued throughout his day of visitors. His nurse and I started to develop alternate strategies as the day went by. We are now staggering the doses of Ativan and Decadron so that he gets something every 3 hours. Also, I have pulled up his Kyril dose so that it coincides with the cycle of gut cell replication that peaks in the morning. That advice came to me from a pediatric pharmacist through Nadine Flynn and her extraordinary network of contacts. When I spoke with Nadine yesterday, we decided that I should keep a journal of his nausea episodes and a schedule of his delivery of anti-nausea drugs. She feels that it will help in our future discussions with medical professionals on how to help Jack through this awful part of his treatment. God I love my friends.
Thursday when we checked in to the hospital, Alex and his friend, Jay came with us. Once we got settled in, I took the boys down to Security, to see if we could get access to The Mark Messier Skyway for Tomorrows Children. As many of you know, Mark is a huge supporter of Tomorrows Children and has been very kind to Jack. The skyway is his contribution to the new children's hospital and it is stunning. There is a miniature hockey rink and a series of cases that house Messier's jerseys, skates and trophies. Each time I visit, I find something else to admire about this sports hero. Jack, the security guard who accompanied us, told the boys that he was a big hockey fan and enjoyed watching the boys play. He said he got chills just seeing the kids so happy, and I found myself wondering if Messier realizes how many people he has touched by his generosity. I will tell him the next time we speak.
When I got the boys back to the room, Angela Eng was there with her boys, Derek and Andrew. She bought Chinese food for Jack and he ate ravenously, not to mention what his enormous brother Alex and Jay consumed. It was Jack's last good meal and I worry about the weight he will lose this week. Jack played a game of Sorry with the boys all the while playing with his PSP.
Andrew and Derek fought over some rubbery toy and it created a feeling of home for Jack. Nice for me to know that Alex and Jack aren't the only ones. I got to spend some time with Angela while the boys were occupied.
Well, it was a cast of thousands yesterday at the hospital. First up were Woody, Lauren and Amanda. Woody brought Jack a Super Bowl hat to add to his collection, and Jack smiled weakly through his Ativan-induced haze at his new friend. Why doesn't somebody give me Ativan, especially because who shows up next but crazy Uncle Richie and his lovely wife, Joann. As if that's not enough they are joined by Terry Egan, the wackiest woman I know. But having them all there takes my mind off things for a short period of time and I am glad for the relief and the laughter. It is amazing to me that I have not lost my abiity to laugh despite Jack's illness. God I love my friends.
Maggie Sisco came with her daughter, Maclaine and brought, Mary Kate, my friend Kelly's daughter, too. Jack responded to their visit by throwing up(I think he thought Uncle Richie was still there). They came with homemade cupcakes for Jack and snacks for me; nuts because we are and olives for "olive you". I say this to my kids all the time. Mary Kate and Maclaine, tired of talking to uninteresting adults, decided to get markers and leave messages for Jack on his white boards. Maggie, in clear violation of Kelly's visiting rules, refused to leave at her appointed time. The girls responded by going to the gift shop to buy sour gum for Jack. No sour gum in evidence, they began to combine fruity gums wrapped in sour candies until they reached a duo that worked to their satisfaction. Gum wrappers and candies lay strewn over the bed in the aftermath of their efforts. I believe we will all see the fruits of their labor next year at Super Science Saturday in Ridgewood.
Joining them later in the afternoon were Melinda and Sophie Sohval. Melinda is a nurse practioner and had lots of advice on Jack's nausea. Her daughter, Sophie is a classmate of Jack's and writes to him often via his guestbook. They brought Jack a sudoku book,which Jack loves. The funny part of this story is that Sophie made her dad return the first one that he bought, because it was for beginners. Sophie explained to her dad that Jack's a math guy, so he went out and got "Sudoku for Brown Belts". Nicely done, Mr. Sohval.
Rounding out our visitors for the day were Thomas Kim and his son, Connor. Jack slept through the whole visit, which left Connor and me plenty of time to talk about math. Now, Connor and I do enrichment work together and he knows me very well. When he walked into the room and saw Jack sleeping, he knew right away what he was up against. But, I was too slick for him. I softened him up by asking lots of questions about Lacrosse. He loves that sport and I know it. Then when his guard was down, I brought up math(which is my favorite sport and he knows it). He was cornered and did his best not to look defeated. Just then his mom called, saying that their hour was up and he had to leave. Unlike, Maggie, the rule breaker, they got up to go, Connor moving noticably faster than Thomas.
I keep forgetting to mention my girls night out courtesy of Maggie DaVita. Friday, the night before Jack's admission to the hospital, Maggie had a group of women at her house to help send me off feeling upbeat. It was a wonderful thought and an even more enjoyable evening. I didn't spend a moment worrying about the week to come(those Cosmos were awesome, Tom). Seeing all of my closest friends together in support of Jack was absolutely amazing. God I love my friends.
Also on Friday night, Jack got a visit from Rose Boniello and her children, Anthony and Christina. When they came to visit Jack in the hospital last time, it bothered Christina that Jack's room did not have a window. She decided to do something about it and took on a "construction" project with her art teacher, Mrs. Pifher. They designed and created a "window" for Jack's room. I can tell that a lot of thought and effort went into Jack's window and he loves it.
We have a meeting planned with the transplant team this afternoon. I am anxious to hear what they have to tell us.
Saturday, April 1, 2006 9:18 PM CST
So many times when I sit down to write in this journal my thoughts are of Jack. I am keenly aware of how he's feeling, how his mood is shifting. My focus is so narrow now. While I understand and worked hard to map out this journey, I am now determined to concentrate on the task at hand. This past week I have been resolved to figuring out how to stop his nausea (so far so good). He is asleep, listening to sounds of the ocean, courtesy of his Aunt Mary. The room is filled with calming smells from his aromatherapy machine, thanks to his Child Life Specialist, Maureen. Then there's the navy blue pillowcase with the Superman logo ( embossed with a J instead of an S) created by Ms. Hyer, Jack's art teacher,which discreetly conceals his chemotherapy drugs. Finally, he is wearing his Uncle Ray's relief bands, which emit a small electrical charge designed to block seasickness. It looks like an alternative medicine shop in here.
The net effect of all of this is that I forget to acknowledge the many gifts that have come to my family these past weeks (is it really less than 6 weeks ago that Jack relapsed?). For instance, Mrs. Fogg's husband, James, came to the house last week while Jack and I were in the clinic and installed a water filtration system for Jack. So now we don't have to worry about toxins in our drinking water. We are all big water drinkers and Jack is thrilled to have this in our home.
This week, Terry Caliendo's CCD class stopped by with a gift for Jack. The girls wove together 2 fleece blankets so that Jack would have something to keep him warm. When we were packing for the hospital, Jack grabbed it and gave me a smile. He is sound asleep under it right now.
Alright, so many of you have asked me who Woody Waga is. If this question were posed to me 6 weeks ago, I would respond by saying that I have no idea. How time changes things. Woody is the grandfather of one of the girls Jack goes to school with. Under any other circumstances, I am sure that our paths would never have crossed, but Jack's illness changed all that. There is something in Jack's story that touched a chord with Woody and he has become a champion to a child he has never formally met. So much so that he wrote a human interest piece that was sent via e-mail to 32,000 of his fellow court reporters. Now Jack receives guestbook entries from all over the nation.
Tonight while Jack was sleeping, Mary Ellen O'Keefe, and her daughter, Anna Teresa stopped in to see Jack. Anna Teresa, like so many Ridgewood kids, wanted to find a way to cheer Jack up. She came up with something pretty special. Her tennis teacher, Alice, helped her write a song celebrating all that is unique about Jack. Collaborating on this effort were some people who know Jack really well - Mary Pat and Ryan Phillips and Nancy and Brendan Carroll. The song is upbeat and the lyrics are pure Jack. I've decided that when he wakes up I'm going to suggest that we listen to some music on the radio and then play the CD. I am in awe of this young girl who went to so much trouble to help a sick child.
Final note: It has been 5 hours since they started Jack's chemo and no nausea yet. I am psyched. Anyone who wants to give him a call can reach him on 201-270-3536.
Friday, March 31, 2006 5:22 AM CST
I am sitting in Jack's room, watching him sleep. When I get anxious, being near him, hearing him breathe, helps to calm me down. It is easy to write now with him so close.
These past few days have been more difficult than usual. I have had a harder time picking myself back up and getting going again. The enormity of Jack's illness hits me in waves , and I feel responsible for running interference for him all of the time. He is such a smart, sweet kid that he understands this, instinctively. I try to act like it is just another day, but he knows it is not. The other day I was knee deep in research on pediatric anti-emetic protocols and trying to learn about the different classes of drugs, what affects their efficacy, and what combinations will help Jack fight his nausea. I know I was getting frustrated because my faux medical degree can only take me so far. Jack could see that I was getting crabby (he's had a lot of practice lately) and tried to console me. This is what my tender child said to me, " I am sorry about all of this, mom. I know how hard my being sick is on you". Tears came at the awareness of his compassion for me when he is so sick. I would like to say that he caught me off guard, but he didn't. This is who Jack is, and I believe it is why so many people are drawn to him. God has blessed him with a gentle goodness and a kindness of spirit that is rare in a child so young. I remember a conference with his fourth grade teacher, Cathy Hanna. We talked about Jack's work in his academic studies, how he related to his classmates and his level of respect for his teachers. I was happy with his progress. Then Cathy told me she wanted to discuss one more thing. She said that for a child his age, Jack had a keen sense of justice. It took me a minute to process what she was saying. She explained that Jack was always willing to defend the underdog, to go against what was in his best interests to help others. Absolutely amazing.
Now back to his crabby mother. Yesterday we went into the clinic for bloodwork and I scowled at every single person I came in contact with. Guess how many extended conversations I had. That's right - none. Where ever I went, it was like parting the seas. Dorothy, Jack's compassionate nurse, had his IV pole of hydration ready, thinking we were staying. I gave her an extra-long scowl and she backed away. Today I will apologize. Dr. Halpern called shortly after I got home and said Jack's counts were good, and by the way he forgot to tell me, he needs to examine Jack before he gets admitted on Saturday. I gave him my best and lengthiest telepathic scowl. He got it quickly and apologized profusely. I said too bad, I'm not bringing him back today, tomorrow will have to do. Sharp man that he is, he readily agreed and I hung up.
Once again, it is time in our program to discuss the ever-talented, ultra-hardworking Nadine Flynn. For those of you who just tuned in, Nadine is an attorney for Bristol Myers Squibb, with some serious research skills. This woman's got game when it comes to figuring stuff out. Talk about tenacious. Makin' me look like a slacker (I'm definitely hanging around Jack too much, he really wants to be black). Anyway, I read a couple of very promising articles on acupuncture's effectiveness in reducing or resolving chemotherapy induced nausea and vomiting. These came to me courtesy of Claudia Allocco, the medical librarian at Valley Hospital. Nadine reached the same conclusion at about the same time. I worked with my insurance company, Nadine went looking for a practitioner. We both struck gold. The list of providers Aetna gave me did not work out and they agreed that I could look out of network. Nadine found someone in Paramus, Rulon Brown, interrogated the daylights out of this guy in true lawyer fashion, and we are set to meet at 3:30 this afternoon. Pretty powerful stuff. Jack was reluctant at first, but warmed to the idea after speaking to Scott Mayr, a friend of Alex's that has had acupuncture before. I would like to time the acupuncture closely with the beginning of chemo, so Rulon has agreed to come to the hospital. Let's see what the hospital thinks about this. More fun to follow - I'm back.
Wednesday, March 29, 2006 7:27 PM CST
I am tired and cranky. Not a winning combination, by a long stretch. These days leading up to Jack's admission are fraught with tension, anxiety and fatigue. More than anything else, I want Jack to have an easier time than he did 3 weeks ago. I want desperately to get his nausea under control and stop this relentless vomiting. Sorry for the indelicate choice of words, but cancer just isn't pretty. We save that for me. Do I hear laughing? Probably.
Anyway, I have made small inroads in my quest to have Jack do his time in the new hospital. Today, I told Dr. Halpern that Jack could not do another week in that dungeon. It is important to allow Jack to have some control, in an uncontrollable situation. Dr. Halpern agreed, but would only go so far. He is comfortable with giving Jack 2 days, but no more. The protocols are written as standard of care and there are reasons to operate within their guidelines. I am happy with the compromise and relieved that we will only be in the old hospital for 3 nights; we can put up with that.
Yesterday Jack and I went to Salon Eliya with Michael Kavanaugh, Brendan Carroll, Brody Garrity, Michael Schneider, Kurt Hommen and Alex for the shaving of the heads. We had to wait for a while and the boys lost their marbles. The only reason we were not asked to leave is the kindness of the salon owners, Najat and Lina. Even then, we were pushing it. While we were waiting, one of the customers, Katie Pepe, asked if we could all pray for Jack. She is an Interfaith Minister and wanted to offer her support. We held hands in the tiny waiting area and prayed The Lord's Prayer. We also rubbed our hands together to create warmth and then extended them over Jack to send healing thoughts his way. There were intermittent bouts of the giggles from the boys, but it was very touching. I love it when God shows up in unusual ways.
I have to say that watching Najat shear all of Jack's hair made me unbearably sad. I have been here before, I have done this already. I do not want to walk on this path any more. Too bad for me.
While Jack's head was being buzzed, he looked for KAV to be near him. I watched him extend his small hand and saw Michael right there to take it. I looked up to see this beautiful smile spread across Jack's face and for the hundredth time I thanked God that Michael is a part of Jack's life. I am keenly aware of the blessings of friends.
As each of his friends got buzzed, Jack was there to take a picture. They are all funny and animated shots. If I had any talent with the digital camera, you would be looking at them now. As it is, I have to rely on the help of my daughter, Kate. Maybe over the weekend.
Tuesday, March 28, 2006 1:49 PM CST
We got in under the wire with our photography session with Josie Dvorken. Jack's hair is coming out quickly and there was no way to even get a brush through it, so he has that mussed bed-head look that is popular now. Josie made our time with her lots of fun, and we forgot Jack's illness for a while. We took the group photo first and then some of just Kate, Alex and Jack. The boys took a photo with their dad , and Kate and I posed together. There wasn't a combination Josie didn't get and I am so grateful to her for doing this for us. Hopefully, we will have something to post on the web-site that reflects our time with her.
This is the big afternoon for Jack. The one where we say goodbye to his hair for the short term. Like last time, he'll have his friends and his brother right by his side. I couldn't ask for a better group of boys to take this journey with him. New for this go-around is Jack's best basketball buddy, #14 Michael Kavanaugh, known affectionately as "KAV". His mom has kept in touch so that Michael would be available to Jack when the time came. It is here now and they are ready. I truly hate the fact that he has to do this again, but having these boys by Jack's side does so much to ease my pain. It is emotional, but better.
Now back to our story on Jack's next round of chemo as part of the salvage regimen. When last we left his medical team, we were hoping that the new children's hospital would open on schedule. So far so good, per Annie Campbell. It looks like they will be in on 4/4. Jack's docs still want him to be admitted on Thursday, but I am trying to make a change. It would do Jack a world of good to be in a private room, in beautiful new surroundings. I know that the chemo drugs are important, but I also know that many other factors contribute to his wellbeing. Say a prayer that his doctors agree and will be willing to make this concession for him.
Sunday, March 26, 2006 9:04 PM CST
It has been a fun filled and action packed weekend. When Jack came home from school on Friday, he had a gift from Ms. Hyer and some talented art students. Earlier in the week I asked Ms. Hyer, Jack's art teacher, to help me decorate pillowcases to cover Jack's IV drugs which hang on his pole. The idea came from Nancy Imperatore, my resourceful friend. She noticed that the sight of these bottles made Jack sick and suggested that we cover them immediately with pillowcases. It helped. Then we discussed drawing on them with fabric markers which brought me to Ms. Hyer. She did an amazing job. One has a drawing of Popeye flexing his muscles with JACKSTRONG written below it. The other has Superman's emblem, with a big J to replace the S. They are Navy blue, the color of the JACKSTRONG bands.
Jack and I went to dinner Saturday night with Rose Boniello and her two terrific children, Anthony and Christina. I am sure that you have seen their entries in Jack's guestbook. Each of them, in their own way, writes straight from the heart and their words are always touching to read. Rose came up with the idea of eating out instead of cooking for us and it worked out really well. It was fun to be out in a restaurant with friends while Jack is able to do that.
Today Jack's grandmother, Nunu, came to visit with Jack's Uncle Jimmy and his cousins Mikey, Danny and Andrew. Later in the day, my friend Nadine Flynn came with her husband Lou and her girls, Maddie and Fiona. Jack was genuinely happy to see everyone, especially the girls. Nadine brought with her more research on chemotherapy induced nausea and vomiting and we talked about strategies for Jack's next round. I am always happy for her help.
Jack went out to his Maroons soccer team's game this afternoon with Coach Schneider, as his Assistant Coach. The team played phenomenally well. Everyone involved was very pleased to start off the season with a 6-0 victory. Ryan Phillips and Michael Schneider,two of Jack's best friends each had a goal. Jack came home flush with excitement.
This evening our entire family went to dinner with the Kims. We all had a great time, until Jack realized that his hair is beginning to fall out. I have been expecting it, but it still hits hard. Jack and I have been sitting here talking about this and remembering what it was like last time. It feels awful.
A respected photographer in town, Josie Dvorken, will take a family portrait for us on Tuesday. She made this offer last year and I decided to contact her on Saturday. She called back quickly to say that she would be happy to help. Keep your fingers crossed that Jack still has his hair. On that topic, I think that Jack will have his head buzzed at Salon Eliya Tuesday afternoon. Nancy Carroll has offered to help coordinate this effort for anyone who wants to join him. I would like to take a group portrait before and after the cuts so Jack can remember the experience.
Saturday, March 25, 2006 7:11 AM CST
It has been an easy couple of days for us. Jack's white blood cell counts are high enough that Rich can stop the daily injections of neupogen. Jack is thrilled. He gets these shots in his thighs and after a week, he is very sore. Icing the area beforehand helps, but it can take him an hour to be ready. By then all of our nerves are frazzled.
In my duties as Nurse Ratchit, I have to flush both lines of Jack's port 3 days a week. There have been times that simply talking about it causes him to get sick to his stomach. He and I have begun to work on mental strategies to stop this before it begins. I am no match for him, and I have to listen carefully to what it is he needs. We are making limited progress, but progress nonetheless.
A lot of this is key to getting his nausea under control before he begins his second cycle of chemotherapy at the end of this week. Dr. Stoller has worked very hard to help me research options as well as different meds that Jack could try. Nadine Flynn has reached out to pharmacists so that I can interpret what I'm reading. Maureen McLaughlin, Jack's Child Life Specialist, is going at this from the mind-body connection. Dr. Halpern, Jack's pediatric oncologist, has agreed to incorporate what we bring and has investigated a new drug called Emend. Collectively, here is the plan. We will pre-load Jack with anti-nausea drugs right before they begin his chemo. The meds will be given around the clock and any changes will be discussed beforehand. Hopefully, this plan will prevent the awful experience he had during his first cycle.
Now back to Jack's adventures over the past two days. When last we met, Jack was headed out the door with the Condellas for a brief shopping trip. They were gone for several hours, which should have tipped me off(for those of you who know me well, this is a big stretch these days). Anyway, Mrs. Condella and Anna seem to have confused the seasons, for it looks like Christmas morning as Jack hauls in his booty. He pulls several pairs of windpants(much cooler than sweats) out of bags from Old Navy and The Gap. Next come shorts, jeans and assorted tops. I am horrified; he is ecstatic, and I rein myself in. Anna and Mary have brought this beautiful smile to my sweet son's face, and I will not take that from any of them. I cast aside my lecture about the hand-me-downs in his closet and let him enjoy the moment.
Shopping mission completed, they head to the food court for lunch. Jack is a very economical shopper and has carefully watched the prices on the clothing he has chosen. He uses the same skills to purchase lunch. He convinces Mary to buy one extra value meal from Nathan's and ask for extra cups so they can share the large soft drink. Everyone gets what they want. I am sure Mary does not know what to make of this young child( just so you know, yes, I can hear you laughing, Uncle Richie).When I call Mary to thank her, she tells me that they had the best time together and can hardly wait to go again. Jack flashes me that Groucho Marx face and I know that he is happy, too.
Yesterday, Jack got up and chose a new outfit and looked pretty terrific. I chose an old outfit and looked pretty much like you would expect. I dropped him at school and went to work. I think it was good for both of us to turn our attention to other things. After work, Uncle Richie came for a visit with my dad. Jack was with his friends and reluctant to come back to the house. Exhaustive negotiating ensued and Jack agreed to come home while his friend Michael went to the orthodontist. Uncle Richie and Jido had about 20 minutes to squeeze in all of their good wishes before Michael's dad, Mark, returned to reclaim Jack. The pressure was brutal, and truthfully, Uncle Richie collapsed under the weight of it. We got him back by reminding him that dinner was on the way, courtesy of Rosemary and Paul Miller, teachers from Jack's middle school. Jido was oblivious.
During all of this, Mike Moran stopped by to repair a computer glitch. He came without his son, David, and frankly, we were all a little less enthusiastic about his visit. He forged a real connection to Uncle Richie, to no one's surprise.
Last night was Spirit Night at BF and I offered to chaperone. Jack told me, in no uncertain terms, not to speak to him, look at him, or make contact of any kind, unless, of course, he needed more money. I refused to comply and did all of those things. He gave me back my money and hid for the rest of the evening. I had a great time.
Thursday, March 23, 2006 1:50 PM CST
Jack's counts are high enough for him to be out and about. I am relieved that he is out of harm's way for a short period of time. He is happy for a return to some sense of normalcy and his resilience is something to marvel at. Each struggle he faces is met as the challenge that it is. He takes his knocks, licks his wounds and gets back up. As his mom, I am proud of his fortitude and broken-hearted at the road he has to travel. It saps my strength.
At the hospital yesterday, we paid a visit to Public Relations while we were waiting for Jack's counts to come back from the lab. Jack has friends everywhere, in so many departments, that it feels like home. Annie Campbell and Lesley Bruno were truly happy to see Jack. He settled into a comfy chair and talked with them about school. They each, at different times, attended his school and the three of them compared notes about teachers and classes. Jack lit up when Lesley asked about his Latin teacher, Magistra Carroll, and they each addressed each other in their latin names. I love to see Jack laugh. He is so pale now because his hemoglobin is low, but that smile still lights up his face.
We also get to visit Lynn Hoffman, the executive director of The Tomorrow Children's Fund. Jack has a $500 check from his dad's coworkers at AT&T to present to her. They had a fundraiser in Jack's honor and he is proud to give her the check. While we are there, he asks Lynn about Yankee tickets and they discuss the possibilities. It is sweet to watch them engrossed in the brochure, trying to figure out what will work given the constraints of Jack's medical care. I am an outsider now and grateful to Lynn for her connection to Jack.
This morning, I let Jack sleep in. Noreen, his APN, wants him to take things slowly. He has a late breakfast and we decide to stay home and write thank you notes. The task is daunting and I tell him that he only has to send them for some gifts. Last time he wrote one for very item and I told him that he could stop when I realized the total reached 83. I will not make him do that again. It got to the point that he would cry if he saw a package waiting at our front door when we returned home. Nice mother.
He is out shopping now with our friend, Mary Condella, and her daughter, Anna. They are back from London after being away for several years. Jack needs sweatpants for the hospital and Mary picked up 4 pairs, but they were huge on him. He is so slight that I thought it best for him to go on a shopping adventure and try them on. He seemed more than eager to go. I think it is nice for both of us to spend some time apart. His illness binds us tightly together and it can leave us both drained.
We do not have to check in with the hospital for the next week, unless something goes wrong. Jack is scheduled to be admitted on 3/30, but we are hoping to delay things for just a few days. The new hospital will be ready for pediatric oncology on 4/4. It is a magnificent facility, one Jack helped to dedicate back in December. If Dr. Halpern feels that it is safe, we will be among the first patients admitted there. Keep your fingers crossed.
Tuesday, March 21, 2006 2:40 PM CST
It was a really rough weekend for Jack. He spiked fever and felt sick right through Monday. I got a good dressing down from Carly, his APN, for not bringing him into the emergency room on Saturday night. Her feeling was that I put him at risk because his counts were so low and his fever was hovering around 101. In that situation, his body is unable to fight back and a bacterial infection could cause grave problems. I was glad she was so candid with me and learned a valuable lesson.
Yesterday we went into the hospital for counts, and they are slowly coming back. Today, Jack had to stay home from school, but tomorrow, depending on his counts, he might be able to go in the afternoon. We will go to the clinic first thing in the morning.
Jack had an amazing night last night. Mark Messier called Rich to ask if Jack could go to MSG to see The Rangers play. Rich explained that Jack could not be in large indoor public spaces because of the risk of infection. Mark said that this would not affect them because they would be watching from his luxury suite. Jack was ecstatic. So, Rich, Alex and Jack watched the game in the company of Mark, Adam Graves and Mike Richter! It was the event of a lifetime for all of them. Mark spent the entire first period sitting, just he and Jack. They mingled for the second period and then during the third, Jack had Mike Richter all to himself. Jack smiled from ear-to-ear as he was telling me the details. I am grateful to all of them for making Jack's illness recede, even briefly.
In January, Jack was out on the ice at MSG with Mark when they retired his number. Rich bought tee shirts for both of the boys and Alex wore his last night. Mark, Adam and Mike signed it for him, and Alex has vowed never to wash it again. I hope that means that he will never wear it again, either. One never knows.
Last Friday night, I had the opportunity to meet Pat Gonelli, from Smile Forever. This non-profit is dedicated to the memory of his wife, who died of cancer. The organization helps families struggling with the financial burdens of fighting this disease, and my friend, Sherrill Masi introduced us. I am grateful for their help and support.
Sunday, March 19, 2006 6:02 AM CST
Yesterday was a day of mood swings and emotional contrasts. Things got started early when Mike Moran and Douglas Swanson came to help with our computer problems. Naively, I thought this would take under two hours and the guys would be done. Unfortunately, the documentation that we should be keeping on passwords,etc. has been very fragmented and it took over 2 hours just to get started. Most of what they needed apparently was housed only in Kate's head and she was at school. Cell phone off plus school administration gone for the weekend equalled a road trip for David, Mike's son, and me. We had a wonderful adventure, sort of like Thelma and Louis.
The school auditorium was bustling with activity due to a dance competition. David and I were tempted to take in a few numbers, but we had work to do. We located a member of the custodial staff and we got an escort, through locked gates, to Kate's classroom. Very Mission Impossible. En route, we paid a visit to Kate's biotech teacher, Mrs. Leonardi, who was so happy to meet David. We explained that we could not stay, as we were trying to crack computer codes and needed to move quickly. She was impressed, and we offered to return, if possible. She understood. On arrival in Kate's class, we met Ms. Man, who also loved David (I am beginning to see a pattern here. Lots of attention to David, very little to me). Kate provides the needed info, but it is too late. Douglas has figured it out on his own. Oh, well.
Kate tells us that Mrs. Leonardi has cookies in her classroom and David and I see this as added incentive to stop in again. Unfortunately, Kate has a pesky habit of lying and there are no cookies. We are both annoyed, but just then I remember that the Math Team is meeting and they always have goodies. I tell David that Mr. Holbrook, the math team advisor, has donuts and candy which keep the kids sugared up and willing to do math. This, of course, is never necessary with any of Mrs. Szigety's math students. David agrees to pay a visit to Mr. Holbrook, who also likes David, but he has no cookies. David tries to be polite, shakes Mr. Holbrook's hand, but we are both getting a little bit frustrated. We few every single donut, and finally David decides to take a chocolate glazed. No one offers Mrs. Szigety anything; I appear to be invisible around David. It is time to head back home. David eats his donut, half-heartedly, and I am more determined than ever to get those cookies.
David is having a wonderful time on the road and we make a plan to run some errands together. First stop, Martha and Ido Rossi's to return dishes from a wonderful meal that Martha prepared earlier in the week. Guess what? They both love David and we are invited in for milk and cookies. I tell them about David's basketball trophy and he lights up as he talks about playing the game. David has just finished his season with Special Stars, an organization devoted to getting children with developmental disabilities into the game. They want us to stay, but we are very popular today and have many other places to go. Next stop, the Ridgewood Public Library. We return some books and wait our turn at the desk to pick up books they are holding; all the while David is eyeing those elevator doors. He is thrilled to see the doors open and close and we decide to go for a ride. We go up to the top floor, walk around and head down to reference, where we wave to people we know. Just then I remember that there are two sets of elevators, and we walk across the floor to ride those. David treats me to a dazzling smile; we are having a wonderful time together. Outside we meet Sydney, a beautiful and friendly black lab. She likes David right away and he asks if we can stay awhile and visit. He hops up on the bench next to Sydney's owner, and we make a new friend. Sydney tries , in earnest, to lick David's face and her charm wears off quickly. David blows her a kiss and we are on our way.
Next, I have to return a container to Mrs. Emery. She brought brownies to the hospital last week, when Jack had his surgery. David and I visit with Dr. Emery, Collin and Peter McGinley. The boys are watching cartoons,and ask David to join them. It is 1:20 and I promised Mike that I would have David back and ready for home at 1:45. We still have to have lunch. David is unimpressed with my request to get going; he is happy to be with his friends and does not want to leave. Dr. Emery offers to have David stay. No such offer is extended to me. A commercial comes on the TV and I use the opportunity to get David going. He shakes hands with Dr. Emery, his daughters, Tori and Jillian, and tries to be polite to their dog, Brogan. But it looks like Brogan might try to kiss him and David is not going down that road again. It has been a spectacular morning for both of us.
Back at the ranch, things are moving slowly for Mike and Douglas. I feel bad that they are working so hard to help us. They are undaunted and eventually get the wireless network up and running. Kate and Alex are thrilled to have this problem resolved. Me, too. Douglas gives us a punch list of things to purchase and offers to come back again in May, when he returns from Yale. I will get working on it.
When I return, Jack is feeling pretty bad. He gets sick to his stomach and has spiked a fever; I know the hospital will want him to go in. Jack is so upset that I decide to wait and see how things progress; I do not leave his side for any length of time for the rest of the day. At 9:30, Dr. Terrin calls to say that he wants Jack to go to the ER, just to be examined by a doctor. Jack is terrified that they will admit him. His fever is hovering around 100.5 and I decide to put him in bed, rather than subject him to an ordeal. It is a wise choice; Jack sleeps through the night and is feeling much better today. We will check in with the hospital again this morning. There is so much more to say, but Nurse Ratchit is being paged.
Friday, March 17, 2006 7:46 PM CST
Okay, I did it again. Typed almost my whole entry and then lost the entire thing. No real excuse either, just ordinary fatigue. So here goes, one more time.
This morning Jack got up bright and early and we were off to the hospital, or so I thought. As I headed out to Route 17, Jack began to panic. He thought he was going to school first and then to the clinic later in the morning. I pulled over. When I asked him what the issue was, he said that he promised a classmate that he would be in homeroom, and he wanted to be there. I came up with Plan B. Jack cannot take PE because of the port in his chest. So I suggested that we go to the hospital at 10:15 when that class was scheduled. Mini-crisis averted. That's the thing about Jack's illness. He meets the stiffest challenges with dignity and courage. Then sometimes he falls apart over seemingly inconsequential issues. It has the effect of keeping me off-balance and I feel the need to stay on the alert all of the time. I am tired.
So, the hospital takes blood and his white blood cell counts are much lower than expected. Carly, his APN, does not want Jack to return to school. This does not go over well and Jack hunkers down for some very artful negotiating. He asks her what is at issue and she explains that she doesn't want him in enclosed spaces with large crowds of potentially sick kids. He offers to stay out of the lunchroom and she agrees to let him attend social studies and math, with stipulations. Every child must clean their hands before class and he has to sit a slight distance from his classmates. They smile, shake hands and it is done. The most amazing part for me is watching Jack control a small part of his destiny in an absolutely uncontrollable situation. I believe it pays great dividends, as he does not feel totally powerless. Score one for Jack!
Monday morning we return to the clinic for another round of bloodwork. Carly feels that he has a 50/50 chance of being transfused. Rich gives Jack daily injections of Neupogen, a drug designed to increase his white blood cells. The shots are painful and I just cannot bring myself to do it. Thank God Rich can. This began on Wednesday and lasts anywhere from 10 to 14 days, depending on his counts. Maybe it will be enough. Jack can't attend school on Monday, so he begins home instruction with Pat Weeks. Pat teaches part time at BF and will help Jack stay on top of his work.
The big news today is the unveiling of a secret project that Jack's closest friends have been working on with their guidance counselor, Dave Tashian. It seems that the boys wanted to find a way to show Jack their unity and support in his fight against cancer. When Dave queried the boys about what it was they wanted to do, the resounding response was that they wanted to honor Jack's amazing strength. The sentiment was that some people are strong, but few, if any, are JACKSTRONG. They decided on a silicon bracelet bearing their new word. I am blown away by the thought of these young kids doing what they can to support their friend.
Today, in John Fiocchi's social studies class, the boys presented Jack with his bracelet. They explained that the proceeds would go for the purchase of a laptop for him to use in the hospital. He can keep up with his schoolwork, contact friends and play games. All of this was designed to help Jack pass the time in his journey back to health. Jack was beaming and once again, I found myself overwhelmed with emotion. Truly, I can't take too much more of this. I am the equivalent of an emotional train wreck.
Tomorrow, Mike Moran and Caryn Swanson's son, Douglas, are coming to the house to troubleshoot some computer problems with Rich and Alex. I am so glad to have their help and relieved that it is one less thing for me to do.
Thursday, March 16, 2006 6:47 PM CST
Jack and I had the most spectacular day. He slept in and looked a little pale when he woke up. We decided jointly to take it easy today and catch up on some rest. Our itinerary included reading (me, not Jack), video games with the new PSP (Jack, not me),popcorn and a viewing of the new Harry Potter DVD as well as some much needed sleep. It was magical and had the effect of recharging our batteries. Although my life and my home are in complete disarray, it was a wise way to spend the day.
Tomorrow I will work on learning more about anti-nausea drugs, so that Jack has a better shot at staying ahead of this thing for his next cycle. The constant retching is so debilitating and hard for Jack to recover from. Jack's docs and his APN feel that this is all part of the process and have offered Jack all the standard options for remedy. But none of it is really working and I have to keep trying. So,I reached out to the medical librarians at The National Cancer Institute and at Valley. One of the suggestions I got was to contact the pediatric pharmacist at HUMC. What a brilliant idea; I will work on that tomorrow when I'm at the clinic. If anyone has advice or experience, please e-mail me. It would really help. My address is at the bottom of this page.
Speaking of the clinic, Jack has to be there in the morning to have blood counts taken. His APN thinks that there is a 30 hance he will need blood or platelets. Monday is the low point and his counts should start to rebound early next week. Thank you, (yet again) Barbara, for organizing all of the donors. Thank you also to all of the people who have signed up to do this for Jack. It is touching to see the names of friends, some of whom I have not spoken to in years, show up on that list.
I forgot to mention something in yesterday's journal entry. Tuesday night Jack got a visit from Alex's closest friend, Colin Thurston, and his mom, Gaye. They came in with a big wrapped box and equally big smiles. Jack opened the box to find that wishes really do come true because inside was an XBox 360. Colin has been saving to buy this thing for himself for quite some time. Instead, he used his savings as seed money to fund raise through the Freshman class at RHS to buy it for Jack. I am blown away by the kindness of this odd and peculiar child (absolute terms of endearment). I didn't think it was possible to get a system, as they have been on back order for quite some time. Gaye said that she was prepared to go directly to Bill Gates. She tried Toys-R-Us first and lucked out on her second call. They were showing a delivery of one and agreed to save it for Jack. He is thrilled because he never would have gotten it from me.
Now comes the time in our program where I speak directly to the people bringing meals and snacks to my home (and you know who you are). The food has been amazing and my family has enjoyed all of it. However, I must remind you that we are only five people and we are not large people ( no one is pointing fingers at you, Uncle Richie). Furthermore, we are not housing illegal immigrants in our basement that need to be fed. I have been forced to insist that, in the future, anyone bringing food into this house will have strict limits on what they can leave here. Either that, or Uncle Richie,and my nephew, Mikey, will have to live here for the foreseeable future. Believe me, that would be fair to no one. On second thought, Jack would love it.
Wednesday, March 15, 2006 7:39 PM CST
JACK IS BACK! What a difference a day makes. From being virtually catatonic to wanting to go to school, all in less than 24 hours. This morning we went out to see Lina and Najat, the women who cut my hair, so that Jack could have a shampoo and blow dry. His new port cannot get wet and so washing his hair is a problem. It did him a world of good and he really came to life, so much so that he wanted to go to school. On a whim, I decided to take him. At that point he was still hooked up to IV fluids. His pump is housed in a backpack that he wears where ever he goes.
When we entered the main hallway several children recognized him and were genuinely happy that he was back at school. He enjoyed the celebrity of the moment and I was glad to see him so happy. Moments later his best buds were there to greet him and he was surrounded by the kids who love him best.
Jack timed his entrance beautifully and it was off to lunch(no pesky class work for him). When we arrived in the cafeteria, he was treated to thunderous applause and a standing ovation. I was in tears and had to turn away. It is overwhelming to see the amount of support he gets from his classmates, teachers and administration. I cannot help but feel that it plays a part in his quest to get well.
This afternoon I got to unhook his pump, which was not so bad. That faux medical degree is really paying off. Jack had a visit today from his friend, Connor, and his mom,my wonderful friend, Mary Lyons Kim. Mary put a spreadsheet together of people who would be available to help me if I get into a bind. Her timing was perfect. Kate called from The Academies, saying that she would not be able to get the bus home. I checked the list and found that Dr. Sal Stolfo could pick her up on his way home from a class at Columbia. The problem was solved quickly and Kate enjoyed her time with Sal. Thank you to all of you for making yourselves available. It eases my mind to know that there are friends I can reach out to as a need arises.
Tuesday, March 14, 2006 5:16 PM CST
We are home from the hospital! Truthfully, I couldn't take much more and I told Dr. Gregory that when he came to see Jack. I asked that we be discharged to the clinic this morning to finish up chemo there. Dr. Gregory had a better idea. He suggested that we leave the hospital last night with the help of a home infusion company. The thought was this: the docs could push up his 24 hour infusion and we could finish that part of the chemo last night. Then I would administer the next 24 hours of hydration at home. As I am very close to completing my correspondence school medical degree, this had great appeal to me. The home infusion company arrived at 5 PM and we switched Jack from the hospital pumps to theirs. Definitely not Florence Nightingale, maybe more like Nurse Ratchit. We were on our way home by 6 PM. I was ecstatic. We had to return to the clinic this morning for Jack's last chemo drug, but that was easy.
Once again, the roster of visitors was impressive. My oldest friend, Jean, came in the morning. She bought a PSP for Jack; it had the same effect as the money game - cash or cash equivalents, it's all good to Jack. Note to Uncle Richie: Those circus peanuts you bought are looking kinda lame now. Aunt Jean really raised the bar. Next came Patti Roche and her daughter Haley and Jack's friend Nick. Jack slept through all of it. To close out the schedule we had a visit from Mrs. Pfeiffer, Mrs. Hansen,her son, Tyler, and Mrs. Lang. They brought news from BF, Jack's school, to keep us up-to-date. The school has created a big JACKSTRONG banner and it is placed in the hall near Jack's locker. Pat brought a picture to show Jack what it looks like; it is touching to see Jack's name and spirit in such a prominent place. It was terrific for me to finish our stay in the hospital with such wonderful friends.
Now for the medical news. The last few days have taken their toll on Jack. He has not eaten since Saturday and is weak from the constant nausea and lack of nourishment. It is disheartening to see him so unresponsive. This morning we saw Dr.Halpern; Jack was totally uninterested and he loves his doc. Next came his favorite nurse, Dorothy, and I was sure we were golden. Nothing. Next up was Maureen McLaughlin, his Child Life Specialist. Maureen has so many novel ways to engage Jack that I was relieved to finally see her. My joy was short-lived. It did not matter that Maureen was back from vacation. I was crestfallen. Until late this afternoon, nothing could budge him from this stupor.
So who pulls this out for Jack? None other than the amazing Ryan Phillips. Jack gives him the faintest hint of a smile when he arrives and things gradually get better for him. Rich takes the boys to the deli, where they get a nice walk in and stock up on tons of candy. I realize that Jack has been very deliberate in his choice of adult accompaniment, and I see just a glimmer of the Jack I want back. Things are looking up.
Monday, March 13, 2006 5:34 AM CST
Saturday was such a good day for Jack. Sunday was not. I really thought that we had the nausea under control, but it came back full force yesterday. Getting sick to his stomach so often wipes Jack out, it also discourages him and it is hard to shift his focus away from his illness. Today I will work with Dr. Halpern on possible remedies.
So many of you have asked what the administration of chemotherapy drugs is like for Jack. This is the third protocol and the seventh cycle of chemo drugs Jack has had. Each protocol is different, and they seem to get tougher to handle as you go along. I guess that they bring out the bigger guns to fight resistant or relapsed disease. That's what Jack is up against now. Anyway, this cycle of chemo involves a 24 hour infusion for 4 days. That means that Jack cannot leave the floor for a breath of fresh air or a change of scenery. Our room does not have a window and by now we are somewhat stir-crazy. The icing on the cake is that Jack got a roommate yesterday who doesn't really understand that nausea and eating large quantities of food don't mix. So here's what we are listening to, over and over. Big orders placed for several cups of jello, pudding, soda and cake. Kitchen personnel arrive, food is ingested shockingly fast. Wait for a few minutes and major barfing begins, replete with all the loud gagging and nauseating whoosh of liquids. Jack is horrified as are the rest of us and he begins to get sick himself.
I have already asked them to lower the volume on the endless Jerry Springer style shows that they both like ( boy is 15, mom is insane) and truly can't think of the right words to use for this issue. We need to get out of this room. In the interim, we spend time with guests in the Family Room.
Speaking of guests, so many people came to see Jack yesterday. First were Fred and Barbara Barbi. Fred is Jack's homeroom teacher this year and Barbara taught him as a third grader. Although his energy level on a normal day can drive a teacher to distraction, both of them want that Jack to come back as soon as possible. Me,too.
Then Rose Boniello came by with her kids, Anthony and Christina. Rose is a Eucharistic Minister and brought Communion for Jack. We prayed and received Communion; it was a blessing for all of us. Next came Grandma and cousin Adrienne, followed by Mike Marion, Jack's point guy from The Cox Classic. When Jack woke up and saw him there, he broke out in the sweetest smile. Mike said it made his day. Tell me about it!
Ryan Phillips, determined to see Jack awake, returned with Michael Schneider and Geri Walter. No such luck. That's okay, because I made them both tell me what they were working on in school, especially math. They didn't seem too happy. I don't think they're coming back, too much risk. It's tough being pinned in a room with Mrs. Szigety - on the one hand, you really want to see your friend, on the other....
When Geri left with the boys, Mike Moran came up with his son, David. For those of you who don't know him (and too bad for you), David is a classmate of Jack's with Down Syndrome. That very afternoon, he finished up a basketball program in Ridgewood called Special Stars. He brought Jack his trophy, which moves and lights up, so that he could share it with his friend. He also made a card that we taped up to Jack's bulletin board. Jack woke up briefly, spoke to David and drifted back to sleep. It was a sweet moment for both of them.
So the social calendar keeps rolling, thanks to Mrs. Coakley, and Carolina Rosen calls to say that the front desk will not let her come up with her son, Paul until David and Mike leave. Carolina explains that they are here to see Jack and wants to give her Jack's room number. She tells Carolina that that won't be necessary, she knows it by heart, as she has been handing out passes for Jack all day. It makes both of us laugh. Paul is one of the players on the RHS freshmen basketball team and he provides sips of Gatorade for Jack, as needed. Jack is happy to see him, too.
Just when you think the day is over, Cheryl Kavanaugh calls to say that she wants to stop for a quick visit, with her son Patrick. Jack surprises us all and sleeps through the whole thing!
So we are almost done with the first cycle of Jack's salvage regimen. With any luck he should be home late Tuesday night or early Wednesday morning. Thanks to all of you for helping us through.
Saturday, March 11, 2006 7:30 PM CST
God bless Dr. Stoller. She read my journal entry last night and called minutes later to offer advice on resolving Jack's nausea. In her personal experience with cancer, she had success with a drug called Kytril and wanted me to ask that it be prescribed for Jack. First thing this morning I spoke with the attending, Dr. Harlow, and he agreed that it was the right thing to try. We decided that Jack would get Kytril, Decadron and a low dose of Ativan on a regular basis. Dr. Stoller feels that it is important to stop the cycle of nausea and we need to do what we can to make that happen. Her recommendations are working. Jack's nausea was markedly better today and he was able to eat throughout the day.
Jack had lots of visitors today and even the front desk employee commented on it when I checked in. The Roth/ Brienza crew was first up and Jack enjoyed their company. Then Mark and Max Needle came and brought Jack a Nets Jersey signed by Vince Carter. Things are looking up. Jim Garrity came by with Brody, Tanner and Brendan Carroll, but Jack was sound asleep. Lori sent a voodoo doll, which made Uncle Richie visibly nervous.
Speaking of Uncle Richie, he and Aunt Mary came without checking in with Kelly Coakley and she threatened to throw them out, family or not. When Nancy Imperatore showed up we were all actively trying to get Jack out of bed. He would not budge. Then I came up with the money game. We sent Uncle Richie and Nancy ahead to the Family Room to hide dollar bills everywhere. Jack jumped out of the bed, like Lazarus, and the hunt was on. All told, Jack found $25 stuffed under seat cushions, inside dresser drawers and under artwork hanging on the walls. He sorted all the bills, and counted his cash several times before putting it away. Truthfully, I will do just about anything to lift his spirits. This one was a perfect hit. I got some great photos and I will have Rich put them on the site.
We decided to play a card game that Jack really enjoys. Uncle Richie cheated relentlessly by taking Aunt Mary's cards and looking at Nancy's cards. No wonder no one wants to play with him. Throughout the course of play Jack tried to come up with new versions of the money game. No one paid any attention, as there was no more money left to hide. It was a great visit for all of us.
Next up were the Emerys and Jack and I got to have dinner with Collin, Chris and Kevin. They picked up pizza and salad from Renato's and we sat together in the Family Room while we ate. Last, but not least, were Cheryl and Michael Kavanaugh. Kav stayed with Jack until he was close to sleep. It is a nice diversion for us, having all our friends and family visit. The time seems to pass more quickly. Jack is halfway through his chemo drugs and we are both looking forward to busting out of this place.
I keep forgetting to mention Jack's trip to the clinic on Wednesday with Kurt and Brendan. The boys took the trip with us to have Jack's port flushed and met all of Jack's nurses. They even went into the exam room with Jack and watched the whole process. Afterwards, Jack really wanted to show his friends the Mark Messier Skyway for Tomorrows Children but the support people in the clinic said it was closed. I decided to ask Annie Campbell if there was any way to get up there. She contacted security and made it happen. I was so happy for Jack; he is proud of his connection to this hospital and wanted his friends to see this inspiring place. The three of them played happily, while Annie and I watched. It made it easier to show up here on Thursday to begin treatment. Thank you, Annie.
Friday, March 10, 2006 5:31 PM CST
I am sitting here in Jack's room with his favorite RHS freshman, Michael Kavanaugh. As sick as he is, he has asked three times in the last hour when "KAV" will be here. I am happy to say that the waiting is over, for both of us. When Michael is here, Jack has no interest in anyone else; that works fine for me.
The day was a little difficult for Jack. The nausea started in earnest this morning and he got sick to his stomach one too many times for my liking. They tried Zofran, then Decadron but neither helped. His APN offered Ativan in his IV and I jumped on it. The decision was perfect, he slept from 12:30 until 4:30. Unfortunately, Ryan Phillips came to see Jack, but he slept through Ryan's whole visit. When he woke up, the nausea began again.
Last night Rich tried to get internet access for Jack, but had no success. Lisa Paterson came to see Jack and we tried to solve the problem without luck. We decided to have Barbara ask for help through an e-mail. I also reached out to Annie Campbell, Director of Public Relations here at the hospital. Within 5 minutes a group of IT people were in Jack's room. The place was buzzing with activity; wireless internet was connected and a new laptop was resting on Jack's bed, with AOL Instant Messaging installed. Jack slept through the whole thing. During all of this we got calls from Thomas Kim, Mike Moran and Carlos Nodarse saying that they were available to help. When Jack woke up he was good to go. Thank God for all of our amazing friends.
Speaking of amazing, Courtney Pfeiffer, Jack's Pre-Algebra teacher offered to help Alex get ready for his second trimester Algebra II final. Alex jumped on it and she came and spent 2 1/2 hours working with him. I was still knee deep in research and was thrilled for the help. Alex went into his final feeling strong. He came home yesterday to say he got the highest score in the class - 100 I wish you could see the smile he flashed at me as he told me the news. How lucky he is to be so well cared for.
Yesterday when Kelly Coakley came to visit, I told her that Jack needed a new box to house all of his memorabilia. Today Rich stopped at BF and there was this beautiful box, decorated for Jack by Maggie Davita. In the note, tucked inside, Maggie wrote that she accessed his website for thoughts on what to write. She chose inspirational adjectives written by friends and family to inscribe on the box. Jack read them all and absolutely loves the gift. Through his nausea, she brought a smile to his face. It is hard to explain how much this matters, how much it helps Rich and me get through this ordeal.
This morning, I spoke to Pat Cosgrove, Katie and Alex's principal at The Bergen County Academies. I told her that I didn't understand what God was thinking. She said that she had given it a lot of thought and feels that God has plans for Jack. She believes that Jack has something to teach us all about strength and grace under tough circumstances. She just might be right.
Thursday, March 9, 2006 4:21 PM CST
Yesterday was an amazing day for Jack. His principal, guidance counselor and house administrator wanted to send him off in a big way. This is the plan they came up with. Jack has math ninth period with a handful of other sixth graders. He is two years ahead in his coursework, so almost all of his classmates were in other classes. Approximately 125 students lined the hallway of his school and greeted him as he left class. Jack ran down the center giving students a high-five and listening to their cheers of support. It was overwhelming to watch.
Last night there was an awards dinner for the RHS freshman basketball team and Jack was a part of it because of his role as scorekeeper. He sat with his team and had a terrific time. Coach Fiocchi told a couple of stories about how well Jack did his job, despite being so young. He also spoke about the admiration his teammates have for him and how he has garnered the respect of scorekeepers for opposing teams. I am so proud to be his mom.
It has been a tiring day. I let Jack sleep in and worked on paperwork and cleaning up the mess here. It is amazing what happens in 2 weeks when nothing else gets done. I was relieved to put some of it in order.
We left for the hospital just after 10 and spent about 3 hours in the clinic. Dorothy, Jack's favorite nurse, was all set to hook up his IV and the impact of what was happening hit Jack full force. He lost his composure briefly, but then Dorothy was able to bring him back. Looking ahead, this journey seems awfully long and I am trying to figure out how to pace it for both of us. Time will tell.
I have read about Jack's drugs and calculated his dosages myself. His nurse gave me the numbers and they match exactly with mine. They think I'm nuts. I think it is a compliment. He is officially back on chemotherapy.
Wednesday, March 8, 2006 4:49 AM CST
We are ready for tomorrow. I finished up my research with a phone call last night from Dr. Schwartz. We talked at length about gemcitabine and she agreed that the drug does show promise. There is a small study in place, but there is no solid data she is comfortable quoting. It is just too early. Most of what she knows is anecdotal, based on one case here and there. The only pediatric paper that I read discussed the drug's use in relapse after HDT/ASCT for 2 patients. Also, there is some concern with the drug causing problems in the lungs. When I asked for specifics, she said that it has been implicated in fibrosis. The last thing we discussed is gemcitabine's effect on the harvest of Jack's stem cells. I think she said that it made things more difficult before transplant. That was enough for me.
When I asked her what she would do if Jack was with her up at Brown, she said she would do exactly what Dr. Halpern is doing in Hackensack. Probably the most calming words of the day for me. Without reservation, she, Dr. Halpern, Dr. Kamen and Dr. Stoller are the most important medical people in Jack's life right now. It is so reassuring to know that every one of them is on the same page. Tomorrow will be a big day.
The next phase of Jack's road to cure is called the salvage regimen. It involves two chemotherapy drugs called ifosfamide and vinorelbine. In a paper that I read with my brother, Ray, there was a detailed discussion about the toxicity of salvage drugs. Study data showed that the less toxic drugs were every bit as effective and less dangerous than the more toxic ones. Jack's drugs are in this category and I am relieved to know that he can benefit from this wisdom. His nurses tell me that this course of chemo shouldn't be any harder for Jack than the last two cycles he had a year ago, almost to the day. Pray that it works out that way for him. Last time was pretty bad.
These drugs must be delivered in-patient, so he will be admitted for just under a week. The cycle lasts three weeks and I'm not sure what his recovery will be like in those last two weeks. Perhaps he can get to school at some point. I know that would make him happy; he's enjoying celebrity status there these days.
Many people have written my e-mail address to ask how they can help. For those of you who don't know her (and too bad for you), my precious friend, Barbara Del Vecchio, is coordinating a number of efforts. You can reach her on e-mail at barbdv@earthlink.net.
Monday, March 6, 2006 9:04 PM CST
It has been a jam-packed couple of days. I have felt a certain degree of urgency in researching protocols and attempting to understand Jack's options for salvage and HDT/ASCT. The task is daunting, but purposeful.
Yesterday I spent time with Pat Roth going over a massive amount of journal articles, clinical trials, abtracts and chemotherapy drug descriptions. It is hard to keep all of this straight. Pat is a neurosurgeon and unfamiliar with much of this, but that didn't stop him from digging in and zeroing in on the critical questions. I know this was a time-consuming effort for him and he has little spare time.
At so many points over the last few weeks, I have had to stop and really think about the number of blessings in my life. Jack's relapse has hit me hard and it has had the effect of blotting out what is good in my life. So many of you have told me that you wish that you could make this go away, make this all just stop. I wish you could, too, but barring that, this truly is the next best thing. Thank you to all of you for keeping me in the game, for doing all you can to make Jack well. I believe, without reservation, that it helps to strengthen Jack's odds.
The game plan for this morning changed a bit. I did not make the trip to see Dr. Schwartz, because I felt that she might not be able to get the pathology done in time. Instead we picked up the slides and drove down to see Dr. Kamen. He called Saturday night to say that he could have his pathology department review the slides by Tuesday. I still wanted Dr. Schwartz's opinion on drug choices, so Dr. Stoller took the responsibilty for contacting her and I went to see Dr. Kamen.
My brother, Ray, met me in New Brunswick, and we peppered Dr. Kamen with our questions. Ray has read all the research, too, and wanted Dr. Kamen's advice on a change in the chemo piece of the transplant process. He read about something called sequential high dose chemotherapy that looked promising. Dr. Kamen listened carefully to Ray's questions and then explained that he felt it was more chemo than Jack should have. He cited statistics on the risks of secondary cancers that come with so much treatment. Furthermore, he believes that we can effect a cure with traditional HDT/ASCT.
At the same time, Dr. Stoller got to talk with Dr. Schwartz and she is in agreement with the plan Dr. Halpern has to treat Jack. This makes me relax because Dr.Schwartz has dedicated herself to treating Hodgkin's Lymphoma and she knows Jack's case so well. We are getting close to the end.
Pat called tonight after reviewing the last few articles that I gave him and he wants me to dig deeper on this new drug called gemcitabene. It shows promise in a paper we read and he thinks that Dr. Schwartz might have the inside track on some as-yet unpublished study data. I will have Dr.Stoller help me with this tomorrow.
Jack had a visit from Dr. Arilotta, his elementary school principal, tonight. It was nice to see them both catch up now that Jack is in middle school.
Last note- Jack went to school today and had a perfectly normal day. I watched from the sidelines as friends greeted him and promised their support. It was heartwarming and emotional to watch.
PS Kate fixed the link on photos housed on the server at her school. Also, if you're having trouble accessing The Cox Classic website, try it this way : www.coxcharityclassic.com
Saturday, March 4, 2006 4:43 PM CST
Yesterday was a pretty bad day. We met with Dr. Halpern and he went over what the next few months will look like. The standard of care in relapsed Hodgkin's is High Dose Chemotherapy with Autologous Stem Cell Transplant (HDT with ASCT). Autologous means that they will use Jack's own stem cells. Before he can do this, his doctors have to get him into remission. This is called the salvage regimen and his docs want to start immediately. I am not so sure. When we saw Dr. Kamen at The Cancer Institute of NJ, I am sure that he said that we had some time. This morning, Dr.Stoller confirmed that. I have spent most of my energy getting Jack through the biopsy and have not begun to start researching drug choices for the salvage and HDT chemo regimens. I don't feel comfortable proceeding until I know more.
This afternoon I went to see Peter Maslak, Chief of Hematology at Memorial Sloan-Kettering Cancer Center(MSKCC). Peter is married to my friend, Donna, and has helped me in the past with my dad's cancer care. I brought all of my binders, Jack's drugs, radiation therapy schedules, PET/CT scans and test results. Peter quickly found what he wanted and we decided on a strategy. First, get a written copy of the pathology report and the original pathology slides from HUMC. Next, take everything to Dr. Schwartz and ask the pathology department at Brown/Rhode Island Hospital to give us their opinion on the tumor. If they confirm Hodgkin's, then I want her opinion on chemotherapy protocols. She will probably confirm Dr. Halpern's choices because she just co-authored a paper on this very salvage regimen. Peter wants me to ask why she is choosing these drugs and what our other options are. Peter also agreed that we had some time. I am very relieved to have a course of action and grateful to Peter for his help.
Today the boys from the freshman basketball team at Ridgewood HS came to see Jack. I got a mini-break from being his biggest cheerleader. He got an afternoon of fun with some pretty great guys. The boys brought Jack a basketball signed by the entire team and a blow up of a team photo. The picture is amazing and something Jack will take with him when he goes into the hospital. I had a chance to chat With Mike Kavanaugh's mom, Cheryl, Paul Rosen's mom, Carolina and Max Needle's dad, Mark. It was nice to take a break from the seriousness of Jack's disease.
Today I went to get my hair done and saw my friend, Stephanie at the salon. I told her that I was angry with God and when I got to the Pearly Gates I was going to throw God a beating. She said that she was betting on me and that I could definitely take Him. I laughed for the first time in 10 days.
I have been reading journal articles all day. So many people have told me that the information written there can only go so far. None of them take into account "The Jack Factor". I agree and truly believe that he can swing the odds in his favor. With the non-stop support of our community and the strength of family, I am certain that Jack will prevail. Today was a better day.
Friday, March 3, 2006 6:23 PM CST
We are home from the hospital and Jack has taken up residence in the family room. Rich put up a fire and got Jack the laptop and he is reading his guestbook. I am beyond tired and do not feel able to slog through any more journal articles about Jack's disease. Tomorrow I will try again.
Dr. Halpern laid out the next few weeks for us and wants Jack to begin on Monday. I just don't understand how Jack can do that, he seems so weak. A bit of a break would be good for me as well. I told him we would talk again on Monday morning.
I would like to write more, but I just can't.
Thursday, March 2, 2006 1:39 PM CST
Sherrill Masi came to see us last night after all the excitement quieted down. I can't tell you how happy Jack and I were to see her. She brought food for the masses, despite the fact that it was just me. On the phone, my brother said it sounded like enough to feed the Szigetys for a week or any other family for a day. Everybody's a jokester.
Rich called when he got home to say that he had never seen our house so clean and quickly realized what a stupid thing he just said. Of course, he was trying to pay a huge compliment to Barbara Del Vecchio, Kelly Coakley, Traci Tummillo, Carolina Rosen, Cathy Goldberg, Kate Boswick, Donna Hansen, et. al. I wish I could remember the other few women that were there, but I got further than I thought I would, having seen Barb's e-mail so briefly. My brain function is just about shot. Thank you all for doing such a terrific thing for us. My mind is at ease, bringing Jack home tomorrow.
Jack had a tough night last night, waking up every 90 minutes to use his PCA. We did a couple of personal hygiene things and then he went back to sleep. It took me over an hour to fall back to sleep and when I did, it seemed like he was waking up again. Memories of being here in the past flooded back to me, and I realized that we are on that page again. First thing this morning, Jack asked if I was able to get any sleep. He was so concerned that I would be exhausted. Time and time again I marvel at his compassion for others when things are going so poorly for him. On that note, I was telling him that maybe the Yankees would come to visit him in the hospital at some point. His first thought was for his friend Brendan. Did I think he could be there if Mariano Rivera or Derek Jeter came by? I told him we would definitely work it out.
As I am writing, a call comes from Dr. Halpern that he has the definitive diagnosis back from the lab. Dr. Halpern and Jack's Advance Practice Nurse(APN), Carly, are in his room and waiting to talk with us. I leave the offices of TCF and head back upstairs. I know because I don't hear any excitement in Rich's phone voice that they are going to confirm that it is Hodgkin's and that is exactly what happens. I feel deflated. On the really positive side, his bone and bone marrow biopsies are negative. The disease has not taken up residence in these places and I am ecstatic. You take your good news where you can get it and I am celebrating this small victory.
Dr. Halpern tells Jack that he will have two more cycles of chemotherapy before we reassess his condition. The hope is that he will again be in remission. Please pray for this.
Jack is still in an awful lot of pain and I think I have a potent pain killer coming up. Nancy Carroll called to say that Brendan and Ryan are definitely coming with Ryan's Aunt Geri. Nancy is trying to get Kurt, Michael and Brody to come, too. I am grateful to have a break in my duties as pain distractor.
Jack has been out of bed twice today, both times with a great amount of coaxing. The first time he made it about 20 feet to the toy room and needed to sit and take a break. Confident that he could not make it back, he refused to get out of that chair. I told Rich to throw a $20 bill on his bed and if he could reach it he could have the money. Cold hard cash has always been a powerful motivator for Jack. As I write, he is pocketing that money for the XBox 360 fund.
Karl Nelson came to visit Jack today and signed a photo from his Super Bowl winning season. Jack asked about the other players in the photo and was intrigued by the stories of Joe Morris. Karl pointed him out and said that at the time, Morris weighed about 200 pounds. Today he tips the scales at 300+. Gee, I hope this doesn't happen to anyone in our family.
I believe that having visitors will be terrific for Jack this weekend. Please call if you would like to see him, even if it is for a short time. Uncle Richie, if the phone rings and rings, we are out skiing with Jack.
Wednesday, March 1, 2006 4:22 PM CST
I am sitting in the administrative offices at The Tomorrows Children's Fund typing this entry. Rich and Kate are up in the hospital with Jack and that gives me a moment to write. It feels like being with family when I'm here. Actually in my case, it's a little bit better. Only kidding, you big baby members of the Najjar family!
Anyway Rich, Jack and I left the house this morning at 6:10 AM and checked in at the surgical admissions area by 6:30 AM. Father Peter from pastoral care came and anointed Jack before surgery and then his surgeon, Dr. Valda, his anaesthesiologist, Dr. Dragone and his advanced laparoscopist, Dr. Ewing stopped by to see him and answer questions. His biggest concern was about the amount of post-operative pain and how it could be managed. Dr. Ewing told him it would feel like he had done 1000 sit-ups and Dr. Valda promised that he would have a patient controlled analgesic(PCA) that he could use to administer his morphine.
Considering that he has had several surgeries, some painful, I expected him to be more anxious. When Dr. Valda arrived he greeted him with his usual full body laugh. Dr. Valda did the same. Then our friend, Pat Roth (world-class neurosurgeon), stopped by and spent about 20 minutes talking to Jack before going to his office in the Medi-Plex. I wish you could have seen the smile flash across Jack's face when Pat came in. Being with Pat put Jack at ease and I was grateful to him for taking the time to be with Jack.
When it was time to head down to the OR, I donned that fabulous protective jumpsuit and cap and walked down the corridor with Jack. We passed several doctors and one of them recognized Jack from the dedication of the new children's hospital in December. Jack spoke in front of 2000 people about his experiences as a cancer patient at Tomorrows Children and received a standing ovation. This doctor told his colleagues that Jack was the boy that everyone in the hospital was talking about and many people approached him to congratulate him. This brought a huge smile to Jack's face and totally distracted him. It was terrific to see.
In the OR we met Dr. Dragone's brother who is also an anaesthesiologist. Dr. Valda said that he appeared because Jack blinked twice and if he didn't stop, the OR would be filled with Dragones. Jack said "How about this -how about if I blink twice and we get another Jack Szigety in here and you can operate on him and I can go home?" Everyone in the room laughed hysterically and I couldn't help but think of this little boy who could still crack a joke at the toughest of times. Really makes you wonder.
Jack's surgery lasted for 5 long hours. Our friend Gary Louizides went into the OR after 2 1/2 hours and said that they had just gotten to the point where they had a clear view of the tumor. It would be another hour before they had a sample the pathologists were happy with. I think it was on their third try and at that point, they took the whole thing out.
Upon reviewing the frozen tissue, the lab confirmed that the specimen was malignant (these diagnoses are not 100% accurate, but close to it). I know that we anticpated hearing those words, but it broke my heart, as well as my reserve. I am heartsick for Jack and am praying for the strength to be a solid support for him. At that point Rich and I had a decision to make. Wait for definitive diagnosis on friday and schedule another surgery or have Jack's port placed today. We decide with consensus among his docs to go ahead and put in his port.
It is the first thing he notices when he comes out of anaesthesia and he is crushed. Tears begin to flow for both of us. The illusion that this is an infection is shattered and we both feel lost.
His time in recovery is just over an hour and we head up to his room. I was truly hoping for a private room but the floor is busy. Jack has a steady stream of visitors all afternoon and is not happy to see most of them. Then Lynn Hoffman comes in and he comes to life. Lynn is the woman that chose Jack for the Yankees trip and there is a tangible bond between them. I am relieved to have her here, grateful that she can distract Jack from his pain.
Then David Jurist arrives with a big fluffy dog, light as a feather and Jack screams at me for resting it on his hand and pressing on his IV. He has one in the top of each hand and they are painful. He hates these things and I want at least one of them out. His nurse will talk to Dr. Valda. Jack gives her the evil eye and she slinks from the room. I am glad he's turned his rage on someone else. I play my trump card and offer to schedule a visit from Ryan and Brendan; he is not amused.
Next come Annie Campbell, the Director of Public Relations and her associate, Peggy Schunk. Jack needs to have his ice pack changed and not a one of us can open the bag. When we do, ice spills everywhere, including all over Jack's feet. I do not hear him, because his voice won't go over a whisper and I am trying to clean up the mess we made. By the time I realize what he is saying the ice has melted and he is soaking wet. I am invited to leave the room. At this point Rich comes back with Kate and I decide to come down here and write this note. Pretty sharp on my part.
Dr. Valda expects to have Jack stay at least until tomorrow, most likely friday. We will know more then and Dr. Halpern will speak to Jack about what lies ahead. I refuse to think about it for now.
Tuesday, February 28, 2006 8:44 PM CST
Jack went to school today,having decided to talk with his 6th grade classmates about his cancer. Mrs. Fogg, the school nurse, called last night to say that there was a tremendous buzz at school about Jack and that she wanted to address the issue in each class without having Jack subjected to it. When he and I talked about it, the idea made him uncomfortable. So Lorna Oates-Santos, his assistant principal, Dave Tashian, his guidance counselor and Mrs. Fogg and I accompanied Jack into each of 5 sixth grade classrooms and he spoke for himself. The first time was tough and I thought he might be taking on too much. But he persevered and had an easier time as he went along. I couldn't help but admire his bravery and determination. During the course of his illness I have seen this combination come together many times.
When he finished up, it was business as usual and Jack attended all of his classes until 12:15 when we left for the hospital. All his tests looked good and we were cleared for surgery. At 5:15 we went back to Tomorrows Children and got the news that the mono titer was negative. It seems that when I hope for negative results, like the PET/CT, they are positive and when I hope for positive, they are negative. I know it was a long shot, but I was really hoping to spare Jack this ordeal.
One of Jack's favorite teachers from Travell, Ashley Berk, brought dinner over and, more importantly, brought her video game loving husband. We had pizza from Best of Everything, a personal favorite of Jack's. It was terrific to take our minds off his cancer for a few hours. Dr. Berk whooped Alex in some football video game, but Alex still had a ball. We are lucky to have such good friends.
On a humorous note, Barbara Del Vecchio, famous orgaNazi, will be here with a cleaning crew of ten to put this house in order for Jack's return. Someone please take a video.
So we leave for the hospital at 6AM. Pat Roth, put-upon local physician by so many crazy Travell mothers is hoping to join us just before surgery. Gary Louizides will be by to see Jack when he is in recovery. I am grateful for the help. I think Jack is pumped and ready to cut this cancer out of his body and his life. Me,too.
Monday, February 27, 2006 5:37 PM CST
We are just home from the hospital and through with the daunting task of returning so many phone calls. My emotions swing wildly from despair to calm as I process new information, then read Jack's guestbook entries.
I worked most of the day yesterday reading articles with titles like "Patterns of Treatment Failure in Pediatric and Young Adult Patients with Hodgkin's Disease: Local Disease Control with Combined-Modality Therapy" , "Prognostic factors affecting long-term outcome after stem cell transplantation in Hodgkin's lymphoma autografted after a first relapse" and my personal favorite "Effectiveness of high dose chemoradiotherapy and autologous stem cell transplantation for patients with biopsy-proven primary refractory Hodgkin's disease". Quite a day. The articles are sobering and give you a clear picture of this disease that Jack is fighting. I am determined to fight back.
Today we met an amazing physician, Bart Kamen, at The Cancer Institute of New Jersey. He is an MD and a PhD who has dedicated himself to pediatric cancer. He sees patients on one floor and conducts research on the floor above. I was impressed with his ability to accurately digest 16 months of Jack's medical history in less than an hour. The most reassuring thing was that his recommendations tracked exactly with those of Dr. Halpern and Dr. Trippett. Furthermore, he spoke very highly of the transplant team in Hackensack and has sent his own patients there. We all want Jack to receive his care in the best possible place and we love his medical team in Hackensack, so this news was the bright spot in our day.
Another positive note - Jack has a place of honor on the Cox Classic website that you might like to see. On September 19, 2005 Jack spoke in front of 300 people at a charity golf outing to support Tomorrows Children. The foundation director, Mike Marion, has put Jack's story on their web page. Please keep in mind that Jack was in remission when this happened. A week has changed everything. THE URL is www.coxcharityclassic.com/dev .
Last note - we are still waiting for the results of Jack's mono titer. If they prove positive then we will delay his biopsy for two weeks and repeat his scans. Wouldn't that be great?
As I am writing this note, a call comes in from Karl Nelson from The NY Giants for Jack. I tell him that Jack is not here and he asks if he can call back when he gets home. I tell him that I think I can make that happen. Yesterday Dick Grasso, former chairman of the NY Stock Exchange, called and basically told Jack he had what it takes to beat this. I am applying for the job of Jack's executive assistant. Interviews begin this week for all others interested. Uncle Richie need not apply.
Sunday, February 26, 2006 7:40 AM CST
I am attempting to educate myself on Jack's relapse in preparation for our visit to Dr. Kamen tomorrow. The studies, clinical trials and articles are sobering. Each has relevance in some way to Jack's relapse, but not completely, so it is hard to feel like I am getting anywhere. It is frustrating because I want to know, I want to affect the outcomes, I want to make a difference.
Jack's pediatrician, Dr. Stoller returns from vacation today and I am so grateful that I will have her to talk to. She has the ability to ground me, to help me focus my energies and I need that right now. Dr. Smaldone's office has sent a number of articles for me to read; Dr. Stoller will know how to interpret them, know what's significant.
On a positive note, Jack is feeling strong. He spent the afternoon with a friend from school swimming and having dinner at Nellie's. He came home happy and tired. Also, friends are returning from vacation and he feels like there is a place to put his worry. Jack's best bud, Ryan, came home late last night and called here. When Jack got home at 10PM, I told him that he would have to wait until the morning to call. I know him, it will be the first thing he does.
Jack got a phone call midday from Mary Kay Messier saying that Mark wanted to speak with Jack if it was okay with him. Jack was flush with excitement and minutes later the call came. They spoke for about 15 minutes and Mark asked Jack to attend a leadership camp that he is giving next week. Unfortunately, Jack will be recovering from his surgery and cannot attend.
I want to thank all of you for your inspiring messages in Jack's guestbook. They keep us strong.
Saturday, February 25, 2006 6:16 AM CST
Yesterday was a very full and productive day. It always feels better to me when I have a sense of actively fighting Jack's disease. In the morning we prepared for our visit with Dr. Valda by working on the insurance issues surrounding Jack's surgery. Dr. Valda does not participate with Aetna and we had to get a non- participating agreement written. After much paperwork and skill on the part of Dr. Stoller(Jack's pediatrician)'s office we got approval. Next was to look at the Advanced Laparoscopists that Gary recommended. One of them took our insurance but when I called their office this obnoxious woman told me that he did not operate on children and certainly not with a pediatric surgeon in the OR. I left it to Gary to sort through and he did.
Next was to convince Dr. Valda that he was our guy. Of course, he had chosen someone else and when I looked up his credentials and spoke with Gary, I saw that almost all of his work was with gastric bypass. Because Jack's surgery will be tricky, I needed someone with a bit more depth and Dr. Valda agreed to talk with both surgeons. Late in the day I got the call that it worked out the way I hoped; Dr. Douglas Ewing will perform the surgery with Dr. Valda. I am praying that this will increase our odds that the biopsy can be safely taken without the need for open laparotomy. Jack is scheduled to be in the hospital at 6:30 AM on March 1st. One last thought on the biopsy - many people have asked me why Dr. Valda doesn't just remove the tumor and be done with it. It has to do with the fact that it is tangled with the porta and cava blood vessels and to do so would compromise Jack's safety. Additionally, the cancer is in Jack's bloodstream and the only way to rid him of it is chemotherapy.
Next up was to get everything ready for Jack to see Dr. Cindy Schwartz. She is the doc at John's Hopkins that we went to see for a 3rd opinion last March. Of course, she's no longer there and I could not locate an Aetna provider number for her. Dr. Stoller's office to the rescue again. After several calls to Rhode Island Hospital, where she works today, I got their billing dept to agree to bill for Jack's visit under the hospital's provider number. All I had to do now was get the referral and wait for Dr. Schwartz to return on Monday to schedule our visit. Her office told me that they received a FedEx package from Dr. Halpern and I know that Jack's scans and reports are waiting for her. Things began to look up.
When I got home from Dr. Valda's office there was a message from Nadine Flynn, a friend who works for Bristol Myers Squibb. She contacted one of her colleagues, Dr. Laurie Smaldone, who is on the board at The Cancer Institute of New Jersey(CINJ) in New Brunswick. We spoke to her for 30 minutes and she was amazing. Part of what is difficult for me is trying to figure out where to get additional opinions. I know that MD Anderson in Houston, St. Jude's in Memphis and Fred Hutchinson in Seattle all have good lymphoma programs, but I don't know who is best for Jack's condition. Enter Dr. Bart Kamen at the CINJ. Dr. Smaldone believes that he is the guy to help me sort through this. As we speak, I have a palpable sense of relief for the first time since Tuesday. It is late in the day now, almost 4PM on a Friday afternoon. No matter, says Laurie, she has cleared a path for us. Telephone numbers are exchanged, key players identified and I begin to reach out to this comprehesive NIH backed hospital.
It is time to leave for Dr. Stoller's office to pick up referrals for Dr. Schwartz and Dr. Ewing. In the office my cell phone rings and it is Dr. Kamen's office. He will see us any time before 3PM on Monday and he accepts our insurance. Tears come swiftly and I thank God for all the people who care for Jack. I ask for a referral for him as well. It is 5PM and I realize that I do not have copies of Jack's scans or reports; without them seeing Dr. Kamen is worthless. I call the radiology center and they tell me that copies will be available for me by 5PM on Monday. I explain our situation and they agree to do the work right then and there. By 5:45 PM, scans in hand, we are heading home. For the millionth time since Jack has gotten sick, I realize that we have been lucky in an unlucky situation.
Friday, February 24, 2006 7:13 AM CST
It is happening again. The shock of Jack's relapse has not worn off and yet there is so much to do. At 3:00 AM I got out of bed to post this entry, because sleep just wasn't happening. Not wanting to leave Jack's bedside, I wrote for almost an hour in the dark. When I was ready to post my entry I accidentally hit the wrong button and lost everything. The tears came swiftly over something so stupid, but it is hard to keep my composure. Now,I will try again.
Tuesday, Jack went into the hospital for his quarterly scans and I approached the tests with my usual level of anxiety. The PET scan of Jack's mediastinum has never been negative and my fear has been that on his newest set of scans we will finally see the tumor correlates. That did not happen. Instead the doctors saw a 2cm tumor in his abdomen. Jack has never had cancer there and his doctors are surprised. The radiologists are 100% certain that it is cancer, Dr. Halpern, Jack's medical oncologist, about 95% sure. Only biopsy will tell us conclusively.
Yesterday, we spent the morning in the hospital talking about how to handle this. The fact that Jack relapsed at all is a concern, but the fact that it happened so quickly makes his doctors worry. This is serious and Jack needs to know that. Talking with him Tuesday night was one of the hardest things I've ever done. He is smart and savvy and he asked all of the right questions. Some of which I did not feel qualified to answer. So when we got to the hospital, he made a beeline for Dr. Halpern and he asked him if he was going to die. Dr. Halpern told him that he had an excellent chance of beating this. Jack relaxed visibly. My concern is that Jack keeps coming out on the wrong side of all these excellent chances. My sense is that Jack's disease has not "read the textbook" on Hodgkin's and has decided to do it's own thing. That is a worry because cure rates are good with this cancer and there's not much out there to help with cases that relapse. Key for me right now is finding those doctors who have dedicated themselves to working with Hodgkin's relapse patients. Please talk to anyone you know that might be able to help us, medical professionals, patients, etc. My e-mail is kszigety@optonline.net.
Today we have a visit to Dr. Valda, who will be performing Jack's biopsy on Wednesday. The hope is that they will be able to perform the surgery laparoscopically and Dr. Valda will have an MD in the OR who is an Advanced Laparoscopist. Of course, the tumor is in a location that is difficult to access and they might not be able to get it this way, so we must be prepared for open laparotomy. The skill of the laparoscopist is critical and a close family friend, Gary Louizides, who is an Advance Practice nurse in the OR has recommended 2 docs that he feels are top-notch. Today I will ask Dr. Valda to work with one of them.
There is so much more to tell but I am tired and have many calls to make to get ready for today. I will write again soon. Please keep Jack in your prayers and close to your heart.
Saturday, September 17, 2005 7:10 AM EST
Jack is doing amazingly well with his re-entry to life as a normal boy. Yes, Pinocchio, you are a real boy now and you need to do all the things you used to do. Of course, Jack thinks this is a very bizarre statement and basically ignores me. Back to business as usual; isn't life grand!
Starting school was a little tough, as Jack spent too much time in the "School of Mom" last year. You would think that that alone would make him run to middle school, but instead I've just given him a little shove. It worked.
As many of you know, Jack and Rich are leaving for Camden Yards on 9/25 for 5 days in Baltimore with the NY Yankees. Jack was chosen by the director of the Tomorrows Children Fund, Lynn Hoffman, to receive this honor. The package was purchased for $100,000 by an anonymous donor during Don Imus' radiothon last spring and returned to the hospital for them to give to child. Aren't people amazing? I still can't get over the generosity of this couple.
As part of the deal, he gets to fly with the Yankees on their corporate jet, stay in the hotel, warm-up on the fields and hang out in the dugout and manager's box. They will even custom make a Yankee uniform for him. Can't you just see Jack leaning in to Joe Torre with advice on strategy? I hope they know what they're getting themselves into. Probably not.
My favorite part of this whole story is that Jack wanted to take his friend, Brendan, with him instead of Rich. Jack told Lynn that Brendan is also a huge Yankee fan and has had it much harder than he has. When I think about how sick Jack was, I am amazed that he can see anyone else's pain. But, that's Jack. Brendan's dad was a firefighter and he gave his life on 9/11. When Lynn explained that the Yankees had rules and he needed to be with an adult, he offered to stay with A Rod and promised that he and Brendan would be good. We were all in tears.
Our only plan to get Brendan some kind of face time with the team is to have Jack shmooze the Yankees for 3 days and then I would drive the kids down late Tuesday night. If anyone can pull this off, it's Jack. Keep your fingers crossed.
Sunday, August 28, 2005 7:50 EST
Jack had the surgery to remove his port on the 23rd. We were all incredibly nervous and Jack was shaking as we walked to the OR. I am amazed at his bravery when he is so frightened, and I think he gets strength from the people at the hospital. The nurse assigned to us remembered him from the placement of his port because she took care of him back then. It was a wonderful coincidence.
When Dr.Valda came in to see him, he gave Jack his signature smile, and Jack forgot for a moment why we were there.
The surgery lasted for about 75 minutes and Dr. Valda was pleased. Jack stayed in recovery for a few hours because he was in pain. Two doses of Demerol did the trick and we were off to his room.
His nurse tried giving him food and he wasn't able to keep it down. On the third attempt we had success. A few hours later we were on our way home. This Wednesday we go in for a post op visit.
On many levels, I feel a chapter closing in our lives. It feels really, really good.
Thursday, August 11, 2005 8:04 PM CDT
We got the news on Monday that Jack's scans look good. I waited until today to write because I wanted to read the reports myself. Everything looks good on the CT and there are no discernible tumors. The PET, however, shows some activity in the thymus and a part of his lung. Dr. Halpern doesn't think we are looking at cancer, because nothing shows up on the CT.
I have asked that Jack's radiation oncologist, Dr. Wolden, be sent a copy of his scans. It is likely that the uptake on the PET is healing due to radiation therapy and I am hoping that she can confirm that. In any case we are going ahead with the removal of his port on 8/23.
Sunday, August 7, 2005 6:30PM EST
Jack had a wonderful and uneventful 5 weeks off. On July 28th we went into the hospital to have blood drawn and his port flushed. Although Jack was visibly uncomfortable being there, both tasks were accomplished without a terrible amount of stress. Dorothy, his favorite nurse, made herself available to him, even though she was scheduled to assist in a spinal tap. His bloodwork was normal for the first time in 10 months. We no longer speak about "chemo normal".
On Saturday, Jack had his most recent PET/CT. The nurse had a tough time accessing a vein and then bent the needle going in. I asked her to remove the catheter and start again when Jack broke into tears. Perhaps the valium that he takes an hour before these tests had a part in it but he was very upset. Once she started again on his other arm things went more smoothly. It is so hard to see him in pain and I can't wait for all of this to be a distant memory.
Tomorrow, the radiologists will read his scans to see if he has relapsed. Dr. Halpern assures me that the chances are small. If he is cancer-free, we go in for pre-admission testing on the 17th and he is scheduled for surgery to remove his port on the 22nd. Please continue to keep him in your prayers.
Monday, July 4, 2005 7:30 AM EST
It is early morning and the kids are all sleeping. Jack is snoring softly and I am watching him sleep for the millionth time since he got sick. His slow, sweet breath has the effect of calming and relaxing my entire body. No short order. His illness has taught me to value every single moment with him. It has altered my way of thinking on so many levels and when I look at this experience in totality, I try to focus on that. I read an article and in it a woman said that her life was better because she had cancer. I get it.
Jack finished his radiation on Friday and came bounding into the house with a huge smile. Mike Hansen and his son Tyler took Jack in for his last treatment. To quote Jack, they had a great time together and I am grateful to Mike and Tyler for being so kind to Jack and generous with their time.
On Wednesday, I took Jack into Tomorrows Children to have his port flushed and he asked them to take it out before his PET/CT in August. Dr. Halpern told Jack that he needs to wait, just in case he needs more chemo. That was hard to hear, but he understood. So we wait.
The next five weeks are quiet. No bloodwork, no tests, no radiation, no chemo. Just glorious summer.
Wednesday, June 22, 2005 6:15 PM EST
This has been an exciting week for Jack, as he graduated from grade school at Travell and is headed to middle school now. He and his classmates had the opportunity to speak about favorite memories and heroes. Many children spoke about their parents and teachers as heroes. But, when three of Jack's friends got up, they talked about a classmate who is brave and full of energy despite facing a difficult ordeal. They each took turns speaking and talked about their friend with admiration. At the end,they told us that this special classmate was Jack. I wish you could have seen Jack's face light up, he was so happy. Friends and family always seem to be there to lift his spirits. How blessed he is.
We are almost through our final week of radiation. Another reason to celebrate. Rich takes Jack tomorrow and our friend Mike Hansen on Friday. I am officially off duty!
The next six weeks are event-free for Jack. We wait for the radiation to work its magic and then do PET/CT scans. If he is still cancer-free we will schedule the surgery to remove his port. Hopefully treatment ends and celebrations begin mid-August. Stay tuned for details
Friday, June 10, 2005 9:05 AM EST
Monday morning at TCI proved to be very interesting. It took the hospital 2 hours to locate the vaccines and another hour to transport them to TCI. Jack didn't end up getting vaccinated until 11:30 AM. He got an injection in each arm, simultaneously by two of the nurses. The menningococcal is very painful and so was administered in his left arm. He took it without complaint and barely flinched as the needles were going in. I'm getting weary from watching him be brave; it is so hard to do.
We went to see Dr. Halpern, Jack's medical oncologist about waiting on the radiation. He was adamant that Jack start immediately, because his spleen has not been treated since his last chemo on April 8th. It is incredibly difficult to know what is right for Jack because treatments are at cross-purposes with each other. All thanks to the fact that he didn't get his vaccines when he should have.
Do we give his body a chance to mount a response to the vaccine and risk waiting to undergo radiation? Is the risk of bacterial menningitis greater than a relapse of his cancer? Ultimately, all of his doctors agreed that he should start splenic irradiation. So at 12 noon, I drove into Memorial and he had radiation on his spleen.
He's been in a lot of pain these past few days from the shots. His left arm hung at his side for two days and he couldn't be touched there. It is better now.
This week has been an entertaining one for Jack. On Tuesday, our friend Marty took him in, and Jack always looks forward to his time with Marty. When I was in the hospital yesterday I met a woman that Jack visits with and she was telling me how much she enjoys Jack. She told me that she thought she heard him calling Marty "Smarty" and Jack explained that although his name is Marty, you could certainly call him Smarty because he really is. She said she just laughed and laughed.
Then, yesterday, our cousins from Florida, Michael, Mary and Juliet met us at the hospital to go through radiation with Jack. It was so nice to have their company. Things worked out really well; because there was a problem with Jack's machine, we all got to have lunch together. Then I dropped them at the IMAX and headed home. Jack spent the rest of the day in NYC with Michael's sisters and loved every minute of it.
Today he gets to enjoy the company of our friend, Mike Hansen. Mike got tickets for Jack and Rich to see a Yankee game with him and his son Tyler when Jack got the news that he was cancer-free. Rich came home that day and told me that Mike was so happy that he bent down, hugged Jack and kissed the top of his bald head. Thank God for friends and family.
Monday, June 6, 2005 8:30 AM EST
Jack is upstairs sleeping right now and it gives me the opportunity to write this journal entry. On Friday, Jack finished the 3 weeks of radiation to his chest. In the end he had some discomfort in his throat and mouth, but otherwise did remarkably well. His bloodwork, done on Wednesday, looked good and we were all set to start radiation to his spleen today. Jack and I were thrilled because we had a definite date now to complete treatment. However, I realized late Friday night that Jack never got the vaccines required before the start of splenic irradiation. This made me very unhappy and more than a little bit angry. I called Tomorrows Children right away and spoke to a physician who was not at all versed in Jack's care. She told me that I was making her uncomfortable and asked why I waited so long to contact the hospital. This made me even angrier, since I am not the one primarily responsible for Jack's care. But that's a story for another time.
So, I called Jack's radiation oncologist, Dr. Wolden, and she was upset and apologetic that she did not make sure that he had been vaccinated and recommended that I speak to Dr. Stoller, Jack's pediatrician, right away about getting this done. Dr. Stoller, as always, was there to help. Even though we didn't speak until almost 10 PM Friday night, she set things up for us to go into her office on Saturday for the menningococcal and pneumococcal vaccines.
So off we went, only to discover that the vaccine they had was expired. But she doesn't give up so easily. From home she tries to reach other pediatric offices because the clock is ticking and Jack needs this vaccine. However, she doesn't have any luck and we end up having to wait until this morning to go in to TCI.
Once Jack is vaccinated, his body needs to mount a response to produce the antibodies needed to protect his body against bacterial menningitis and pneumonia. Dr. Wolden is willing to wait one week, but Dr. Stoller wants two. Today I will speak to Dr. Halpern, Jack's medical oncologist, and seek his advice. I am in a very bad mood.
Friday, May 20, 2005 12:35 AM CDT
I am sitting at a laptop at Memorial Sloan-Kettering Cancer Center and feeling incredibly irritable. Yes, Uncle Richie, I know you do not see this as especially newsworthy. Nonetheless, we have been here for almost an hour waiting for Jack to get a simple venous blood draw. In Hackensack this would have taken 5 minutes. Note to Karen: never do this again!
Jack has made it through the first week of radiation with his usual mix of style and smile. I have not fared as well, which of course is somewhat ironic, being that I am just doing transport. Driving in NYC is nothing short of horrendous and I cannot believe how out of touch I am. I feel like I should have been issued combat fatigues. Yes, Uncle Richie, I have turned into a major suburban weenie. Such is life.
Anyway, Jack has completely charmed his radiation therapist simply by being Jack. It is fun to see new people react to him; the upside for me in being here.
Dr.Wolden has been terrific and she makes the trip here worthwhile. There were some problems with the simulation because I noticed on the x-rays that he was being treated too high up on the neck on his left side. Dr. Wolden looked at his films and agreed that an error had been made. They did a re-sim yesterday and Jack was miserable. He had to lie on this rigid board again for almost an hour and he was very angry with me. Tough noogies.
I am now going to scream at the receptionist because this is ridiculous. Should be fun.
Friday, May 13, 2005 3:00 PM EST
Jack and I went down to the hospital this morning for blood work. He and I talked about how it was so hard for him to do this the first time, back in September. Now he feels like it is a piece of cake, and I am amazed at how he sees things in such a positive light. It has been his gift to me, and yet I am sure he is not the least bit aware of his affect on all of us.
We got the news we were hoping for. His counts are headed back up and high enough to start radiation. Jack will attend school for half a day and he will leave for the hospital at 11:45 AM each day for six weeks. Rich will take him one day a week, our wonderful friend, Marty, will go one day a week and I will do the other three. If anyone wants to take the trip with us or even take him alone, it would be a nice diversion for Jack.
Friday, May 6, 2005 1:16 PM CDT
I took Jack into Tomorrows Children this morning for bloodwork. Dr. Wolden was planning to start Jack's radiation on Monday, but his counts are too low. In fact his white blood cell count is still dropping and she wants us to wait until next Friday before he has blood drawn again. If his counts are high enough, he will start radiation on the 16th.
Dr. Wolden is concerned that I am being too ambitious in having Jack go to school full time during radiation. Her feeling is that the radiation will be tough on his body. She has suggested that he try a half day and head into the hospital at noon for his treatments. I have decided that she is right and am changing plans to accomodate this new schedule. It should make getting in and out of NYC much easier also.
I'll update everyone next week when his blood counts are back.
Sunday, May 1, 2005 11:38 AM CDT
Jack is at the Yankee game today with his dad and the Hansens, Mike and Tyler, celebrating his new status of being CANCER-FREE. I just can't say that enough.
This week he completed his mapping for radiation at Memorial Sloan-Kettering. Dr. Wolden was able to use many of his existing permanent tattoos, needing to add only two new ones. We were both very relieved. The process went smoothly, no need for a mold for his body or a mask for his head. The one they made in Hackensack scared Jack terribly and I was glad that he won't need it at all.
The plan is for him to start radiation on May 9th, so he gets a week off. I am looking forward to having one normal week - no tests, no treatment, no decisions to be made.
The new picture was taken of Jack and me in the teen lounge at the hospital, by a professional photographer. Tomorrows Children asked our permission to place it on their web site! Jack's celebrity status continues unchecked.
Saturday, April 23, 2005 5:25 PM EST
I have tried several times to sit down and write this message, but the phone doesn't stop ringing. So, here I go again. We got the most incredible news yesterday. JACK IS CANCER FREE! The PET/CT is negative, according to Dr. Halpern. There is some uptake in the supraclavicular region, but the radiologists believe that it is muscle activity, as opposed to rapidly growing cancer cells. There is also something going on in the thymus, but again Dr. Halpern feels that it is not cancerous, because this area was never involved initially. The thymus, it seems, takes a hit from the chemo and any cellular growth is thought to be healing. I will check both issues with Dr. Wolden, Jack's radiation oncologist, at Memorial Sloan-Kettering on Monday.
I want to thank everyone who helped me make the decision to take Jack to Johns Hopkins for a third opinion. I was so unsure as to how to proceed and it was wonderful to have so many people genuinely care about Jack. Thank you, Ines, for doing something so difficult. I'm not sure I could have read your brother's e-mail to anyone and I am grateful for your courage and devotion to Jack.
Our next step is a meeting with Dr. Wolden to discuss involved fields for the radiation and then the mapping of his body. Jack will have a new set of permanent tattoos because Memorial likes to do their own work. I'll have more to say on Monday.
Thursday, April 21, 2005 11:30AM EST
We got great news from the hospital yesterday. Jack's counts are headed back up! His platelet counts are high enough for him to resume playing soccer, and that makes all of us happy. Despite having cancer and undergoing chemotherapy, Jack still has plenty of energy and soccer offers him a perfect outlet. Thank God for Coach Cobb and all the Maroons. Also, I want to extend a special thank you to all of our friends and family who donated blood and platelets for Jack. We had a lot of fun imagining what he would be like, if your kindness found its way into his personality, via your blood.
Jack is at school today and that gives me the opportunity to catch up a bit, even have lunch out with my friend, Liz. It is nice to think about something other than illness and disease. I'm sure Jack feels the same way.
Tomorrow is a big day for us. Jack has his PET/CT and we should have some word on whether the cancer is all gone. Say an extra prayer tonight that he gets good news. Speaking of tonight, Jack's got to sit still on the couch again, so that no muscle activity shows up on the scan tomorrow. If you can, give him a call later today. It really lifts his spirits. Stay tuned for test results sometime tomorrow or Saturday.
Friday, April 15, 2005 6:00AM EST
Yesterday was an absolutely amazing day for Jack. He was so excited about being on the radio and could hardly contain his enthusiasm. I know what you're thinking, just another day for him. But that hasn't been exactly true lately. This chemo protocol has been tougher to get through and the strain shows. Yesterday, I got to see the Jack we all love and know and it was fabulous. Thank you, Maureen for making that possible. It did so much for Jack and everyone who loves him.
When we arrived at the hospital where WFAN was broadcasting, Jack, Monica and I got to watch people being interviewed. Jack was intrigued and Maureen was nervous. So, what does Jack do - he begins to say soothing things to help Maureen relax a bit. I watch this sweet role reversal and I wonder, does Maureen see herself in him, does she recognize her own kind words in his scratchy voice. It's hard to say because they are so focused on each other and I realize for the thousandth time that Jack is lucky and it feels weird to say that, knowing that he has cancer.
Now it is almost time to go up to meet Mike and the Dog and crazy Uncle Richie calls spewing some nonsense about Amando Benito or however you say the name. I have to put Jack on the phone because he is starting to babble and I never listen to anything he says anyway. Jack looks very intent, nods and tells CUR he'll take care of it. As they are seating us, Jack takes a detour to speak to Mike and gives him the CUR speech. The rest is history,as they say, it really set the tone for the entire interview and Jack had a lot of fun razzing the Dog.
Yesterday, when we got home, I was hoping to be able to hear the tape on radio. I saw Julie Ann Camporini at school and she was waving an audio cassette, with a promise to bring it by after dinner. But Marianne Helmstetter beat her to it. There she was, at my door with a VHS tape; she filmed us on the YES network! Thanks to both of you for doing that. We watched the tape as a family and really enjoyed it.
I think the thing that hit me most was watching how kind Mike and Chris were to Jack. And Jack could sense it, too. During times like these, if you can lift a young child's spirits, you're ok in my book. Jack loved all your entries in his guestbook and will be signing autographs shortly. Please stay tuned, details to follow.
Wednesday, April 13, 2005 6:51 PM CDT
I just heard from Jack's nurse and his counts look amazingly good. They are holding off on any decisions to transfuse until Friday when we go back to have his blood drawn again. Everyone who sees him tells me that his coloring is back and he does have a lot of energy, so I feel encouraged.
Tomorrow is Jack's big day on WFAN and he is so excited. Can hardly wait to hear that gravelly voice on the radio.
We have more fun news. The Travell community is hosting a pasta party and Fun Run on April 29/30 in Jack's name. All proceeds will go to The Leukemia and Lymphoma Society to support research. If anyone is interested in attending, please let me know.
Tuesday, April 12, 2005 7:45AM EST
Jack is upstairs sleeping right now and it gives me a moment to write this entry. He went to school yesterday, somewhat reluctantly, but I think it's time for him to "take back his life". He's still nauseous, but the vomitting has stopped and he is so happy with this slight improvement.
Tomorrow we go the hospital to have his blood drawn. If his counts are low, the blood bank will send platelets/blood to the hospital for transfusion on Thursday. I see from Barbara's e-mails that we have all that we need. I have a special note of thanks to Kelly Coakley who gave 2 units of platelets, to balance out for Nancy Kennedy and Maggie Sisco who couldn't donate. You really are the gift that keeps on giving! Also, thanks to Frank Callaghan for reaching out, far and wide, to bolster our list of donors with people he is connected to. I know how tirelessly you and Barb have worked to pull this off and Jack is lucky to have you in his corner.
One of my favorite things about Jack is how aware he is of how much people are doing for him. He always acknowledges an act of kindness and can see clearly how much our friends and family are giving. Truly, no effort goes unnoticed. To me, this is remarkable in a child so young.
We got the word from Memorial Sloan-Kettering that Jack will have his mapping done for radiation on April 25th. It is a good day because results will be in from his PET/CT and he is out of school. Dr. Wolden, his pediatric radiation oncologist, believes that he will begin radiation the first week of May. With any luck, treatment will end by late June.
Sunday, April 10, 2005 11:23 AM CDT
Jack is still incredibly sick to his stomach. The vomitting has lasted much longer this cycle and I am worried about keeping him hydrated. Considering the fact that he is so sick, his spirits are remarkable. He simply "tosses his cookies" and keeps right on going. For the rest of us it is more difficult to rebound. We are all trying to figure this thing out, with mixed results.
Barb DelVecchio is coordinating the blood/platelet drive for Jack and it is just about done. Thanks to all of you for giving so generously. I hope to see a little bit of each of you "show up" in Jack over the next 2 weeks.
The scheduling is set for Jack's PET/CT on April 22nd at 8:30 AM. It was an insurance nightmare to get this accomplished but Ann at the Hackensack Radiology Group came to our rescue. So often we have seen the kindness of strangers in working to get Jack well. We should have results by Monday, at the latest and are praying that this time his chest is completely clean.
On a final note, we have some good news, totally unrelated to Jack's lymphoma. Alex received his acceptance into The Bergen County Academies program for Culinary Arts. He will join Kate next year in Hackensack for high school. We are so proud of him and grateful to all of our friends and family who helped to succeed with his application, exam and interview.
Friday, April 8, 2005 5:18 PM EST
We are home from the hospital and Jack is absolutely wiped out. He is sleeping now on the couch and I am so glad to have him here with us and to be home myself. This new combination of chemotherapy drugs is much harder on him, on all of us for that matter. I can see why it has to be administered inpatient.
Jack's doctors are pleased with the way he handled this last course and I am confident that this is the end of chemotherapy. Now for the questions of transfusions. The docs feel that there is a 75% chance that he will need blood, platelets or both. We will be in the clinic on Wednesday for blood counts. So many friends have offered to help and it made things easier to bear for Jack. We joke that maybe he'll tell really funny jokes if he gets Uncle Richie's blood,or run like the wind if he gets Mrs. Buesser's blood.
We have the definitive word on Jack's radio debut. He will be interviewed on April 14th at 1:30 PM on WFAN 660 AM. If anyone knows how to tape a radio show please let me know or do it for me if possible.
Thursday, April 7, 2005 11:14 AM CDT
Jack started chemo late last night and had a good night sleep. This morning the vomitting began and he is feeling very weak. I came home to deal with insurance issues, but need to head back to the hospital. It's very hard to be away from him when he's so sick. Hopefully we are still set to come home tomorrow or Saturday.
Wednesday, April 6, 2005 11:11 AM CDT
We just heard from the hospital that they've got a bed for Jack. He will be admitted at about 1PM and we are getting ready to go. He is anxious about the next few days, because last month was so hard. Please come to visit him in the hospital if you can.
Tuesday, April 5, 2005 12:19 PM EST
I just heard from Jack's nurse at the hospital that his counts were all good. It's great to see him rebound so well after a week off. We were planning to head straight into the hospital tomorrow, but there are no beds available. Can you believe his rotten luck? At this point he really, really wants to be done with this. Say a prayer that his doctors throw some unsuspecting child out and Jack can be admitted. I think maybe I should start working on that empathy for others thing.
Note to Uncle Richie: no responses yet on the "missing" charm, good looks and whatever other nonsense you were talking about.
Monday, April 4, 2005 6:37PM EST
Jack and I just got back from the hospital. The good news is that the Audiologist told us that Jack's hearing has not changed significantly since his last chemotherapy cycle. Things can change later on, but this is still good news.
Tomorrow we will find out whether or not Jack will be admitted to the hospital on Wednesday. We are waiting on clearance for his blood counts and kidney function. Keep your fingers crossed, Jack really wants to be done with this part of his treatment.
Latest news on Jack's multimedia debut - we will be on air on MSNBC on April 14 at 1:30 PM. Still not sure whether it is radio or TV or both. And NO Uncle Richie, they do not want you, despite your good looks, charm, and personality (has anyone seen any sign of any of these???).
Thursday, March 31, 2005 6:55 EST
Jack has spent the last two days at school and it has really lifted his spirits. He has a week off before his treatment begins again and he feels like he's on vacation. Next Monday we head back to the hospital for bloodwork, audiogram and clearance for his kidneys. If everything looks good, he will be admitted on Wednesday, 4/6 for three days. I believe that this will be the end of chemotherapy, even if the cancer still remains in his chest.
We got some fun news from Jack's Child Life Specialist, Maureen Mc Laughlin. Tomorrows Children is doing a radiothon on MSNBC on April 14. She was asked to choose one patient to represent the hospital and she chose Jack. He is incredibly excited. Stay tuned for more details.
Monday, March 28, 2005 6:23 PM EST
Jack and I got to the hospital early today, thinking he would need a transfusion of blood or platelets or both. We got his blood drawn and went to the local diner for a late breakfast. The results were not back from the lab so we decided to visit Kate's principal at The Academies and pick Kate up for lunch.
When we got back the results still were not in, so we hit the game room with Kate to wait things out. Dr. Halpern came in a little while later to let Jack know the good news. No transfusions and no more neupogen injections this cycle! I think you could hear us both back in Ridgewood. He has the next week off and will be admitted to the hospital on the 6th provided that his counts are good.
Friday, March 25, 2005 12:15 PM EST
Hi everyone. We just started this new page so the people we love can learn about how things are going with Jack.
Friday, March 25, 2005 4:08 PM EST
Jack went to the hospital for blood counts this morning and his platelets and white blood cell count numbers are getting low. His doctors decided to check his blood again on Monday with the likelihood that they will transfuse then. We have plans to check his blood and wait for the results. If he needs blood we'll be ready.
I donated platelets and red blood cells yesterday at The Community Blood Center in Paramus. Anyone interested in donating can call them at 201-444-3900.
Jack's spirits are still remarkably good and I am amazed at his ability to deal with this illness. His doctors are beginning to restrict his activities due to his platelet counts. No more organized sports this weekend, but he can still play informal sports.
Friday, March 25, 2005 12:15 PM EST
Hi everyone. We just started this new page so the people we love can learn about how things are going with Jack.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |