Letters to my son.
|
|
| Dear Henry Letters to my son. |
|
|
Sunday, November 30, 2003   This is from the day after Mom's reunion. Everyone met at Candy Cane city with their kids. I know Mom was sad that she went kidless. There was an amazing website for the Bethesda Chevy Chase High School Class of 1983 reunion. Everyone was able to read what everyone had been doing for the last 20 years. Mom's page talked about you. The people in her class were really nice and told Mom they were sorry about what happened, and sorry they never got to know you.  posted by Allen | Sunday, November 30, 2003 Saturday, November 29, 2003 Thanksgiving made me think about your first Thanksgiving, when you were one month old. We all went out to Annapolis to be with Nana and Papa Sy. There was no Jack and there was no Joe, just you. Nana and Papa Sy sold that house and moved out to St. Michaels when you were maybe 2 years old. This house in St. Michaels seems like home now. There are a lot of good Henry memories out here. I wish I had been doing what I am doing now, taking lots of pictures and writing everything down, when you were alive.  Joe and I drove into town in the morning to get Mom some mushrooms. Mom wanted one pound. I didn't know how many ounces are in a pound so I ended up buying close to 3 pounds of mushrooms. I guess that is why it is important to pay attention in school. When we drove back there were a few people out taking walks. Everyone waves to you when you pass by. That is nice. What else is nice is that cell phones don't work out here. It is very quiet except for the sound of the water and the occasional shotgun barrage, which sounds like popcorn popping in the distance. There were new signs on the doors all over Minneapolis that said "Please do not bring in your guns." I don't know what that is all about. Papa Sy didn't get a goose this morning even though he had "non toxic" shotgun shells. I thought that was kinda funny.  When he came back we went out to bag us a cow. There are some beautiful cows -- they are called Scottish Highlanders and look like big shaggy dogs with horns -- that now live up the street.  Joe was probably the most excited. We all cracked up when the big bull turned his tushy toward us and pooped. Joe learned a new expression, "Poopy Cow."  From big bulls to little bugs, Joe is having a great time. We found a praying mantis and put it up in the tree. Joe sat in the tree and put his nose right up close to the praying mantis, just studying it. It was just like when we were at the zoo and he would not leave the hippos. "Big."  In the afternoon Jack wanted to take out the rowboat. I had never been in it before. We rowed all the way across the cove and back. Jack wanted to row and it was a little hard so I helped him. One day he'll be taking the Tashmoo out all by himself.  Jack had a homework assignment. He had to list the things for which he is thankful. Jack said he is thankful for: 1. Family 2. You 3. Animals 4. Water 5. Food 6. Air  Later in the day we took a drive to Tighlman Island. It got beat up by the hurricane. Joe slept as we drove over to Uncle Peter's new house. They aren't here this weekend. I hear they have real pool inside this house. You and Jack used to think their bathtub in New Jersey was a pool. Baths there were so great because we could all fit. There were 10 deer on the driveway as we came up to the house. I am sorry Joe was asleep and missed them. He would have been very excited. Before dinner was ready I sat at my usual spot in front of the fireplace and looked at photo albums that Nana has on her coffee table. I thought I had looked through them before but all of the pictures seemed new to me. Finally we were all ready to sit down for dinner and I lost it. Thinking of you, seeing your face I just fell apart and wept. posted by Allen | Saturday, November 29, 2003 Wednesday, November 26, 2003 We are in St. Michaels. Joe cried the whole way. I think parents should carry ear plugs to wear sometimes. Joe was tired but wouldn't fall asleep. The headaches we all had when we got here are gone. It feels good to be out in the country. Papa Sy is going goose hunting in the morning. Mom asked me if I wanted to go. I told her that I have no quarrel with the geese, though they do poop all over the place. Joe is going to sleep on the bottom bunk of the bunk bed. He is getting all grown up. There are a lot of good photos of you out here that I want to borrow and scan. I love you pumpkin pie.
posted by Allen |
Wednesday, November 26, 2003
Tuesday, November 25, 2003 Here is some good news for a change. I get emails telling me that there are stories about Fanconi anemia in newspapers. This is left over from when you were alive and I wanted to know everything I could about your disease so we could beat it. I like reading nice things like this. I hope Anthony's transplant goes well.  Transplant donor found for Clovis boy Tuesday, November 25, 2003 A 5-year-old Clovis boy who needs a bone-marrow transplant is one step closer to having the procedure. The parents of Anthony Arroyo heard Friday that a transplant donor had been located. "It's a six out of six -- perfect match," said Anthony's father, Ronald Arroyo. Marrow donors must share six molecular markers, or antigens, with the patient for a perfect match. Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow. Doctors told the Arroyos in May that Anthony would need a transplant within three to six months. The Arroyos got the good news just hours before a bone-marrow donor registration drive on Saturday in Fresno. No one in the Arroyo family was a perfect match, and because Anthony is Hispanic, the Arroyos knew it could be a challenge finding an unrelated donor. Minorities are under-represented on the National Marrow Donor Program registry. A total of 229 people participated in the bone-marrow donor registration, Ronald Arroyo said. "We have our [donor], but we wanted to do it anyway to help other people. Hopefully, somebody else will find a match." The Arroyos are waiting for the donor to meet with officials at Lucille Packard Children's Hospital in Palo Alto, where the transplant will take place. ___________________________________________ Date: 22 Nov 2003 23:24:31 -0000 From: fanconi@yahoogroups.com Add To Address Book Subject: [fanconi] Digest Number 981 To: fanconi@yahoogroups.com Information provided in these emails about medications, treatments or products should not be construed as medical instruction or scientific endorsement. Always consult your physician before taking any action based on this information. ------------------------------------------------------------------------ There is 1 message in this issue. Topics in this digest: 1. National Marrow Donor Awareness Month From: "Allen Goldberg" ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sat, 22 Nov 2003 22:26:27 -0000 From: "Allen Goldberg" Subject: National Marrow Donor Awareness Month As you may know, November is National Marrow Donor Awareness Month. I was fortunate enough to be able to produce some Public Service Announcements through my work to encourage people to sign up for the Registry. If you go to http://www.marrowpsa.org you will find these PSAs. If you have time, email the http://www.marrowpsa.org URL to the General Managers of your local radio stations and ask them to play the PSAs. You can find contact information easily for most radio stations online on their websites. If you don't know their URL you can Google them or search through Yahoo. The Quincy Jones PSAs are good year-round and they are targeted at signing up black and African American donors. The NASCAR PSAs are for Marrow Awareness Month. Thanks, Allen Donor search filled with hope Bone-marrow drive today seeks to find a match for a Fresno boy. By Barbara Anderson The Fresno Bee (Published Saturday, November 22, 2003, 5:49 AM) Anthony Arroyo, 5, rocks back and forth on black cowboy boots, the heels landing perilously close to his younger sister Annalyza's bare toes. Juanita Arroyo admonishes her son to be careful, and Anthony scoots off to watch cartoons, with 3-year-old Annalyza running after him. Anthony is never in one place longer than a minute, which is why his parents didn't expect what doctors told them in May: Anthony would need a bone-marrow transplant within three to six months. Juanita and Ronald Arroyo of Clovis knew Anthony would someday need a transplant, but they had hoped their son would remain healthy longer. Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow. Because Anthony is Hispanic, the Arroyos know it will be harder to find a non-relative donor. Minorities are underrepresented on the National Marrow Donor Program registry. Anthony almost certainly will need a Hispanic donor. Marrow donors must share six molecular markers, or antigens, with the patient to be a perfect match. The Arroyos' relatives and friends are holding a bone-marrow donor registration drive today at a Fresno elementary school, hoping to find a suitable match for the boy. Doctors diagnosed Anthony two years ago. They suspected the boy had the rare disorder because of his thumbs: small, spongelike appendages, about the size of almonds. Birth defects, including small or absent thumbs, are tip-offs to the condition. Children with Fanconi anemia are at risk for leukemia and other cancers. They often show signs of the disorder -- fatigue, frequent infections -- between the ages of 3 and 12. But the only clue that Anthony's bone marrow was failing: monthly blood tests that showed a steady decline in the production of healthy blood cells. Marrow produces red and white blood cells, platelets and other blood products. A bone-marrow biopsy in May confirmed the Arroyos' worst fears. Anthony's bone marrow was shutting down. A bone-marrow transplant is the only option, Juanita Arroyo says. The Arroyos are ready. They just need a donor. They have visited Lucille Packard Children's Hospital in Palo Alto, where the transplant will be done. They took Anthony out of kindergarten at Our Lady of Perpetual Help school in Clovis so he would not be exposed to viruses and be too sick for a transplant. Ronald Arroyo, a supervisor at Lyons Magnus, is ready to spend three to four months with his son at the hospital and while he recovers. Juanita Arroyo, a state employee, also will be by Anthony's side. The concern is that a perfect bone-marrow match will be elusive. No one in Anthony's family is a suitable genetic match. But one of Anthony's uncles, Mike Torres, learned this week he could be a match for a 2-year-old Sacramento boy with leukemia who needs a bone-marrow transplant. And a family friend, Rhonda Capriolgio of Fresno, was a perfect match for a 31-year-old man with leukemia. She donated bone marrow in July. Torres and Capriolgio say they would not have been in the bone-marrow registry except for Anthony's need of a transplant. "I'm glad I'm a match for somebody," Torres says. "We had hoped it would be Anthony, being he's my nephew, but there are other people out there in the same situation as my sister and her family." Capriolgio, who is Hispanic, says she would donate marrow again. "It's definitely an emotional commitment, but you feel good about it afterward and it's worthwhile." The Arroyos say they want Hispanics to be tested for the registry, but they wish people of all races to join the bone-marrow donor drive. Fanconi anemia can occur in any racial or ethnic group. The Arroyos continue to hope someone already in the registry will be a match. A search of the registry began last month. Two years ago, the Arroyos' family and friends hosted a bone-marrow drive that drew 369 people. The idea was to have someone in the registry should Anthony need a transplant. But there was no guarantee that a match would be found from this group of potential donors. The Arroyos considered trying umbilical-cord blood for a bone-marrow transplant. The couple tried test-tube technology last year to genetically select a healthy embryo with a bone-marrow match for Anthony. But Juanita did not become pregnant. Juanita was seven months pregnant with Annalyza when Anthony's condition was diagnosed. Annalyza is healthy, but not a genetic donor match for her brother. The focus now is on finding a bone-marrow donor and keeping Anthony healthy for a transplant. "You could never get ready for something like this," Juanita Arroyo says. "But we know we have no options." The reporter can be reached at banderson@fresnobee.com or 441-6310. posted by Allen | Tuesday, November 25, 2003 I get sad at the same place every time I drive to work. U Street somewhere between 12th and 11th Streets. Sometimes I look around to see if there is anything that I see that makes me think of you. I haven't found anything. I wonder why that happens. Tonight is Aunt Abby's 40th birthday party. I am psyched for her. She definitely does not look or act like she is 40. She seems much younger, like Mom. I am not feeling much like a party right now, though. Maybe it is because I remember where I was on my 40th. Sitting shiva for you. I'll snap out of it for Aunt Abby and for Mommy, and we'll have a good time.  On Friday there is another party. This one is for Mommy. It is her 20th high school reunion. That means all of the people who went to school with Mommy 20 years ago will get together and talk about what they have been doing all this time. Everyone looks at everyone else to see if they still look like they did when they were in school. It is all very silly grown up nonsense. People that Mom hasn't seen in forever tell her she hasn't changed one bit.  I think it will be fun for Mom to see all of her friends from so long ago. At the same time I am a little worried for Mommy because she is going to get asked all night about her family. She might get sad telling our story so many times, but I don't know. When you get past the whole "death" thing, it does feel good to be able to tell people about what a great kid you are/were, and of course it is great to be able to brag about Jack and Joe. I'll take pictures and report back to you.
posted by Allen |
Tuesday, November 25, 2003
Sunday, November 23, 2003 When I was driving home on Friday night the weirdest thing happened. I was thinking about something I wanted to tell you and for a split second I thought about calling you at home. It was like I forgot you were dead. Pop Pop Teddy came over for Shabbat dinner that night. At one point Mom called Joe, "Joseph." It made me think of Joseph and the Amazing Technicolor Dreamcoat and that made me think of you. I loved the way you always wanted to hear the part near the end where Joseph reveals himself to his brothers. I would fast forward the CD to Track 13, I think it was. You knew how to do it yourself. When I wrote you the other night about how a lot of Disney movies have someone die, I had forgotten one of the reasons why. I read in a magazine this week a story about how after Walt Disney made Snow White and the Seven Dwarfs he built his mom and dad a brand new house. That was a really nice thing to do. The sad part is that there was a problem with the furnace (that is the thing that makes houses warm) and his mom died. People think that he was so sad about his mom dying that he made movies with children being separated from parents, like Dumbo. I made the mistake of playing Dumbo for you guys when Mom was up in New York doing IVF. Jack loved Dumbo but it would make him terribly sad. I think that the song "When I See and Elephant Fly" is one of the greatest songs ever. Cartoon Network is having an Iron Giant marathon this weekend. They are playing it twelve times in a row which is fine by me. "Rock." "Tree." "Soopermaan." On Saturday we went down to the Mall for a Walk-a-thon to Help the Homeless which Mommy's work puts together every year. We were in Minnesota last year and couldn't go.  This year we went and Pop Pop Teddy came with us. It was very warm out and thousands of people walked. We went kinda slow because Joe wanted to walk and he walks as fast as a really slow turtle, and Jack didn't want to walk, which slowed him down to as fast as a really slow turtle. It didn't matter because it was so beautiful and we got to walk by all of the monuments.   At the very end we ran into friends and then we went to Cactus Cantina for lunch. It was a close to perfect day. Today we took Joe to see The Wiggles. Joe fell asleep in the car and we waited outside for him to get a least a half-an-hour sleep before we woke him up and took him in. He was kinda grumpy but after a while he got into it. He finally started dancing toward the end.  I think he had fun. I bet you don't remember when we went to Disney on Ice and Jack freaked out. I miss you. We're getting close to the day you died.
posted by Allen |
Sunday, November 23, 2003
Wednesday, November 19, 2003 I jinxed Jack and me. Remember how I said I hadn't signed anyone out of school all year. That changed today. I had just dropped Jack and David off at school and gotten to work when Mom called me. The school called her to say Jack has the chicken pox and we had to come get him. I went back and there he was looking very sad sitting at the front desk waiting for me. I took the clipboard for "Signing out Students" and started to write "H-e" when I stopped and realized I was writing your name. I scratched that out and wrote, "Jack Goldberg." Jack said that he was very bummed to miss Hebrew today. He did not want to leave. Wow, that is so cool. Jack and I drove over to the doctor's office. The doctor counted 40 bumps on Jack. He isn't too sure that it is chicken pox. Jack had the vaccine and then he had what we thought were the chicken pox 2 years ago when Mom was about to have Joe and you were immune compromised. That was the time that you had to rush over to the hospital with Mom to get V-Zig to protect you. Jack and I lived in the basement for a week so he wouldn't infect you. The incubation period was so long and Mom and I were incredibly worried that you were going to get sick. The only way for the doctor to know for sure that Jack has chicken pox this time is to do a blood test. You know how Jack is about needles, so that ain't gonna happen. So whatever it is, Jack will stay home the rest of the week and go back to school on Monday. I hope he won't be too bored. He has his Lego, Pokemon cards, Game Boy and some new movies to watch, "Holes" and "Sinbad." Joe will be excited to have Jack around. I have to go back to the office. It is raining out.
posted by Allen |
Wednesday, November 19, 2003
Tuesday, November 18, 2003 I was looking for a picture of the Batman cape and mask the kid I saw was wearing and I found this. I think it is pretty funny. I hope you do too.  When I was a little kid, probably your age, I once put feet pajamas on our dog Dizzy. Dogs shouldn't really wear pajamas. You want to know why. Because Dizzy went outside to pee and he peed all over the pajama bottoms. They were my pajamas. Aunt Jen thought it was the funniest thing ever. I miss your laugh. posted by Allen | Tuesday, November 18, 2003 Here is the brochure that we created to let people know about the Hope for Henry Foundation. Hannah designed it. That is fitting since she designed your birth announcement. I wish you weren't a brochure.       Hannah has been so good to us. You remember that she designed the Hannukah stamp. That is something happy to look at.  Hannukah is around the corner. I think we'll take Jack and Joe over to Georgetown and bring the kids Hannukah and Christmas presents. Do you remember how whenever anyone came to wish you a Merry Christmas or give you a Christmas present in the hospital you and Jack would thank them and explain that you are Jewish. We used to giggle about the funny way you'd say, "We don't celebrate Christmas; we're Jewish." You were a nut.
posted by Allen |
Tuesday, November 18, 2003
Monday, November 17, 2003 Hey, I forgot to tell you that Dr. Mendelsohn was at the unveiling.  She had some great news. She and Rabbi Winaker are getting married.  Yeah! posted by Allen | Monday, November 17, 2003 We had a parent-teacher conference with Mrs. Singer and Jack's other teachers this morning. They all said he is super-duper smart and enthusiastic. It was so good to hear. I am proud of Jack. It is hard to have your brother die and go on being a normal, good kid. Jack is doing it. This is something Mrs. Singer gave us to show how Jack's writing has improved since the beginning of school.  He doesn't write his name on everything like you did.`Meanwhile, Jack's Judaics teacher said that he really likes this prayer.  It is the prayer you say when you get up in the morning thanking God for giving you back your soul all fresh for the new day. It also means something about the concept of God bringing the righteous people of all generations back to life. That is some heavy duty stuff. I like the tune I once learned for this, but never really focused on what it is saying. Now I know. You guys are lucky that you don't ever have to go to Hebrew school. I never liked going when I was a kid. A lot of the stuff that Jack's teachers said about Jack reminded me of me when I was in school. I think we are a lot alike, but he is definitely smarter and can do harder Legos. We got him the Orient Express for 8 year olds and he did it all by himself without getting frustrated. You'd be proud of Jack too.
posted by Allen |
Monday, November 17, 2003
When we were in Minneapolis, Joe and Jack were in St. Michaels with Nana and Papa Sy. Nana said that Joe try to strip off his clothes. It sounded so much like you, nature boy. You know that Joe loves animals the way you loved superheroes. Joe loves to watch Animal Planet and Stanley. Did you know Stanley's best friend Lester is Jewish. His full name is Lester Goldberg. He has a pretty square head. I guess he is like Billy who is Roly Poly Olly's square headed friend.  Well at least I think Lester is Jewish. You never know these days. I bought Jack the Stanley book about sharks, "Shark Mad Stanley," when we first got to Minnesota for your transplant. This was way before they had a television show. I saw it at that store Mom likes, Patina. I just like the way it was drawn and I knew that Jack would like anything with sharks or whales in it. Maybe Joe will be the Crocodile Hunter when he grows up. I never understand why the crocodile hunter keeps moving the crocodiles at his zoo from one enclosure to another. Joe and I went to the zoo last weekend and he wouldn't let us leave the hippos. We watched them for 20 minutes and Joe just kept saying, "big." Maybe Joe and Jack can have an animal show like the Kratt brothers' show we used to watch on PBS, Kratt's Creatures. When we were over at the Abramson's house in Minneapolis this weekend, Louie asked me what was your favorite animal. I totally spaced. I asked Mom and she said "horses." How could I have forgotten that?  I took these pictures when we went to a farm. I don't think you ever caught the ducks but you gave them a good run.   I wish I had brought the movie camera with us. posted by Allen | Monday, November 17, 2003 Saturday, November 15, 2003 Mom and I went to lunch at the Loring Pasta Bar after the morning sessions. It is the restaurant where we took Jack to tell him that you were going to die. I had the same thing to eat this time.  After lunch we drove over to Fairview. When we got to the hospital we saw the most amazing thing. We were walking in the front of the building and there was no-one around except a little boy about 4 years old. I didn't see his parents. I also didn't see his face because he was wearing a Batman mask and cape. He was literally dancing around. I said "hello." He said "hi" back. Someone I know who is really smart about these things said that if they ever made a movie about your life, that would be the closing scene. I think he is right. We went up to the transplant floor, 4A. Most of the nurses remember you. Sasha was there and Kent. We asked the nurses how many boy and girls were on the floor and how old they are. There were a few kids who have Fanconi anemia. There was a kid with FA in your room, 5.  Such a plain place but I wish we were back. I got very sad looking at the door. I looked at the door next to it where Jaxon was. He died in that room. We then went upstairs to see where you died. First we went to 5B and saw Carol, who was one of your nurses. She was surprised to see us. She said that your name comes up all the time. Then we walked over to 5C. It was really quiet there. There were no families in the hallways or doctors talking. I looked out the window at your end of the hall and it was "smokey" out. There was no-one in the room where you died. I wasn't as sad as I thought I would be. We left the hospital and went to the Target in our old neighborhood. I was walking down the toy aisles and I looked up and saw a friend. Laura Silberfarb, who originally is from around here but now lives in Minnesota, was there shopping with her daughters. She is friends with Caryn Pass. Jack was in her daughter's class at the Minneapolis Jewish Day School. It was an incredible coincidence to run into someone I know just like it was an incredible coincidence -- or magic or whatever makes special things happen -- to see Batman in front of the hospital. Mom and I bought presents for all of the kids going through transplant on 4A. We got Game Boy Advance players and games for the boys, and CD players and CDs for the girls. We also bought some little kid toys for the really young guys. At some point I want to get everyone portable DVD players and XM radios. We went back over to the hospital and gave the gifts to the nurses to give to the kids.  Someone asked me if we wanted to but I said I didn't think it was a good idea. I didn't think the parents would want to meet us. It just felt good to know the kids were getting something nice. Hopefully it would help them forget for just a tiny bit how hard their lives are.    It would be good to get something for the parents, too. This is what the Hope for Henry Foundation is all about. I need to show you the brochure that Hannah made. I'll get that up on here. I love you. posted by Allen | Saturday, November 15, 2003 After we got our car we drove next door to the Mall of America. Did you know that the Mall of America isn't heated. The body heat of all of the people who are shopping keeps the place toasty warm. That's so cool. Mom and I headed straight for the Lego store. There was one change. They have a "Pick a Brick" section where you fill a container with different Legos of all different colors. It is like a candy store. I bought Jack a really big Lego. I owed him. I'll explain that too you later.  This is a picture of you at the Lego store at Mall of America on our last trip. I think the new Harry Potter movie is coming out soon. The previews for it are already showing. Do you remember how I found on the Internet the previews for the last Harry Potter movie. You and Jack watched and got very excited for the movie. It says "The Boy Who Lived," on your headstone. At the unveiling service I explained how that came from Harry Potter, and that you, like Harry, had escaped death. I also said that like Harry, you lived life to its fullest. The Mall of America wasn't as much fun as it used to be. In fact, it wasn't very much fun at all. The fun used to be watching you and Jack on all the rides, or getting excited about racing cars at the Lego store or climbing the climbing wall, or buying you presents to get you to smile. There was none of that, so Mom and I didn't stay very long. As we drove into town we stopped by some of "our" places. We went to the bread bakery in Lake Harriet and to Creative Kidstuff, which is across the street.  Last November you and I bought a nok hockey game for Hannukah. We had it shipped home. It got there; you didn't. It really has never been used by Jack. You need two people. Then Mom and I walked over to Wild Rumpus. Do you remember that bookstore where we bought the Encyclopedia Brown books? They have tarantulas, chickens, cats and a bunch of other wild things running around. Joe would love it.  We found a new Nate the Great book and I bought it for Jack. That is a series I think you liked more than Jack, but I hope he enjoys it. We headed to the hotel which was downtown. I only remember coming down there once when we bought you and Jack a fish tank and a fish, a Beta. We set up the fish tank in the Radisson. Mom said she had come downtown with Jack and Molly Nash and her parents to see Bear and the Big Blue House. posted by Allen | Saturday, November 15, 2003 When I was on the plane I took a look back at emails that we were sending around this time last year. I had set up an email account for you. I think this might have been the first email that you ever sent. -----Original Message----- From: Henry Strongin Goldberg Sent: Monday, October 14, 2002 10:28 PM To: 'Liane (E-mail)' Subject: Hi Bella Hi Bella: How are you doing? I would like to know when I can see you around my birthday. I really look forward to seeing you. I miss you a lot. Love, Henry When we were in Minnesota you sent emails back to everyone to let them know how you were doing. -----Original Message----- From: Henry Strongin Goldberg Sent: Friday, November 15, 2002 2:41 PM To: 'Suzanne Knubel' Subject: RE: Hi from Minnesota That is my J G tube. In fact it is freezing here, literally. I am really glad my mom and dad got me that Patagonia stuff for my birthday. Here is one last photo that dad took just a little while ago in our hospital room, which has a DVD player and home theatre surround sound speakers mounted on the walls -- I am not kidding! My mom's plane just landed and I am going to take a nap now to get ready for her. Have a great weekend. Love, Henry P.s. the hospital food here is better than Georgetown's. I can get happy meals with toys, fruit roll ups, chocolate milk with marshmallows, you name it.  And you got emails back. -----Original Message----- From: Suzanne Knubel Sent: Friday, November 15, 2002 2:20 PM To: henrygoldberg@starpower.net Subject: RE: Hi from Minnesota Dear Henry- Thanks for the picture from today. Anna wants to know if it is really hot in Minnesota there which is why you aren't wearing any pants.....:>:>:>:>:>:>:> I hope your counts come up now! Send me more pictures. I like them! Is that your new J-G tube? Suzanne  I sent emails home, too. I was so certain we were coming back soon. -----Original Message----- From: Allen Goldberg [mailto:allengoldberg@starpower.net] Sent: Thursday, November 14, 2002 1:12 AM To: Subject: surgery in the a.m. (pretty trivial) to place a J G-tube, then a few more days in the hospital -- maybe a week -- and then hopefully home. Laurie and Jack and Harry Potter are coming this friday. henry VERY depressed right now. we are counting the hours til mom gets here. thanks for everything. i think mom and harry potter will give him what he needs to make it through this stretch. Mom and Jack came out this very day last year. Mom thought it was earlier but I just found an email that says they joined up with us on November 15.
posted by Allen |
Saturday, November 15, 2003
Walking into National Airport instantly took me back to last year when we left on our trip. I thought back to us going through security. I was carrying you and our bags and they made me sit down and take off my shoes and do all this stuff. I wasn't psyched about this because we were phyically separated for a few minutes. That was on top of me being so worried about you getting sick from the people around us. Mom was off getting water when they announced they were "pre boarding" the plane. I got really sad. I clearly recall carrying you on and settling into seats in the very back of the plane. You laid down and slept a lot of the way. I had brought with us some Star Wars activities books that I bought at the JPDS book fair with Jack the night before. I was so nervous about flying. There are a lot of germs on airplanes. I didn't want a sick person getting you sick even though you were wearing your mask. You went on a corporate jet back to Washington from Minnesota after your transplant to make sure you didn't get sick. Dr. Wagner told us that you were more susceptible to infection when we were going back to Minnesota last November than you were right after your transplant. On this flight I was squeezed in the middle seat with a man on the aisle and Mom at the window. It was really cramped. I wish I had your mask because the guy on the aisle was farting something awful. Maybe he was nervous about germs or something. It was the worst but I was stuck with nowhere to hide. I wanted to write something on the computer and show it to Mom so she would know it wasn't me. After we got off the plane I said to her, "What was the deal with that guy. Oh man!" When Mom and I walked through the gate at the Minnesota airport it seemed to me that everyone in the airport was coughing. I still hear coughing and get nervous. I am sure that will go away some day. When you and I got there it was night time. It was the first time we ever had a motorized cart meet us at the gate. That was kinda cool. I wondered why we had never requested that before. I don't think I made things as easy as I could have. At the baggage claim you were incredibly miserable. You were so uncomfortable in your mask that you didn't want to wear it. You sat on the baggage cart and cried. You were inconsolable. I called Mom. Nothing was helping. We went and got our car from Hertz and drove to our home away from home at the Radisson and settled in. This time with Mom we rented an Avis car because they have XM radios in them. I am usually very loyal to people and companies that were good to you and the Minneapolis Hertz people were always a big help. But since I work at XM I thought I better get Avis. posted by Allen | Saturday, November 15, 2003 Driving to Hackensack was a breeze. Georgetown was so close we could walk, but getting to Minnesota was heartbreaking. I was looking back at some of the emails I was sending out when we got ready to go back last November. -----Original Message----- From: Northwest Airlines [mailto:northwest.airlines@nwa.com] Sent: Tuesday, November 05, 2002 10:52 AM To: Allen Goldberg Subject: RE: Other: (please specify) looking for flt w/least no. of passengers (KMM5115398V10935L0KM) Dear Mr. Goldberg, Actually I will be happy to document your concerns regarding the restrictions for our Medical Emergency fares. I will also forward these on to the appropriate executives in charge of future planning. With that said, have you tried contacting our Medical Fares Desk at 612-727-5867. I know that we have special rates for passengers traveling to the Mayo Clinic, St. Jude's, and other destinations. If they cannot assist, please forward your current confirmation number to my attention for further review. Any other questions or concerns, please don't hesitate to ask. Sincerely, Julie Lindsholm Special Needs Coordinator, Customer Relations Northwest/KLM Airlines Original Message Follows: ------------------------- Julie: Thanks for your assistance. I have gone ahead and made our reservation. I have a follow up question. Who can I write to at NWA to ask that you review and hopefully revise your emergency fare policy. In 2000, my entire family drove to Minnesota for my son, Henry's, bone marrow transplant (he flew back with my wife on a corporate jet). This now is the second time since then that my son has had to travel to Minneapolis for an unscheduled admittance to Fairview Children's Medical Center due to a possibly life-threatening complication. If I am not mistaken, as the NWA emergency fare policy currently stands I could put Henry (though he's only 7) on a flight in the morning and then I could take a later flight and qualify for the discounted fare because I'd be traveling to visit him in the hospital. Is there any way the emergency policy can be amended to reflect that some passengers are traveling to a hospital to be patients themselves. I can imagine that with the Mayo Clinic and other fine medical institutions in the home state of NWA, this revision to your already very compassionate policy would make sense. I paid full fare and will go ahead and write back to customer service with full documentation to appeal for a refund as I did last year. Meanwhile, I hope that NWA reconsiders its emergency fare policy, so emotionally and financially strapped families, like mine, do not have to put out thousands of dollars just to get to the health care we so desperately need. Thanks for your continued help. Regards, Allen -----Original Message----- From: Northwest Airlines [mailto:northwest.airlines@nwa.com] Sent: Monday, November 04, 2002 4:07 PM To: Allen Goldberg Subject: Re: Other: (please specify) looking for flt w/least no. of passengers (KMM5107228V43950L0KM) Dear Mr. Goldberg, In your email, you wrote requesting information regarding the flight capacity for travel between Washington D.C. and Minneapolis/St. Paul. While I cannot give specific numbers, I can advise that the following flights would be what you are looking for: NW 395 DCAMSP 640A 821A NW 553 DCAMSP 410P 556P (except Friday) NW1715 DCAMSP 740P 932P If you require further assistance with seat assignments or special requests such as wheelchair assistance, please don't hesitate to ask. I am willing to try to assist you and your family in any way I possibly can. Sincerely, Julie Lindsholm Special Needs Coordinator, Customer Relations Northwest/KLM Airlines Original Message Follows: ------------------------- Area of nwa.com: nwa.com Reservations The Northwest Support Talk to Us form has been submitted with: Area of nwa.com: nwa.com Reservations Subject type selection: Other: (please specify) Other Subject: looking for flt w/least no. of passengers First Name: Allen Last Name: Goldberg Reply-To Email Address: allengoldberg@starpower.net WP number: Flight Date: Flight Number: Origin: DCA Destination: MSP Tkt Number: Conf number: Message: The following is an email that explains my family situation. My son is severely immune compromised and has just become ill this past week. We live in Washington, DC and must return to Minnesota this week to see his doctors. I am worried about traveling on a commercial flight, but have no other realistic option. What I would like to do is ease my concerns by taking a flight that traditionally has fewer passengers. Can you let me know which Washington, DC to Minneapolis, MN flight is the least travelled. Northwest Airlines has been incredibly helpful and compassionate to out family throughout our ordeal and I thank you for your continued assistance. I hope it is easier for other people. posted by Allen | Saturday, November 15, 2003 Thursday, November 13, 2003 Mom and I went to some fancy-schmancy dinner tonight.  You always wanted to wear your sports jacket, which you called a your tuxedo. Then we finally rented you a tuxedo for Catherine and Tim's wedding. You looked so handsome. You were so happy.  You were "elegant." Tomorrow morning we leave early to go to the National Marrow Donor Program meeting in Minneapolis. It'll be our first time back since you died. I really liked Minneapolis. I lived there almost longer than anywhere other than home in Washington. I hope I still like it.
posted by Allen |
Thursday, November 13, 2003
Wednesday, November 12, 2003 You know how you liked teeny tiny things. Joe likes really big things. We went to the toy store and all he wanted were the big plastic animals. I got him a few small monkeys and rhinos and elephants. I think he was bummed out. He calls his animals his "guys." He carries as many of his guys with him wherever he goes. His favorite thing to do is throw the animals behind the couch and then insist we retrieve them for him. We do this over and over again. The cool thing is that he is a mini Jack in the way he loves animals. He loves watching Animal Planet. Joe isn't much of a cartoon watcher, unless there are animals. He is watching Finding Nemo a lot. When Mom and I are in Minnesota, Jack and Joe will be in St. Michaels with Nana, Papa Sy, Uncle Stinky, Aunt Tracy, Emma and Sam. It will be fun. We are all going to go back there for Thanksgiving. Last November, we spent Thanksgiving at the Ronald McDonald House in Minneapolis. I wonder if Mom and I will go by there. I don't know. Maybe I'll go by and take a picture. I have finally caught up with my letters to you. I have a bunch of notes and things I still need to add but it feels good to be writing to you regularly again. Joe doesn't ever want to go to bed. Sound familiar. Kiss goodnight big guy. I love you. posted by Allen | Wednesday, November 12, 2003 Tuesday, November 11, 2003 There is a friend of Roger's who is painting the inside of the house. His name, and I am not making this up, is "Wild Pig." I met him this morning. He is really nice and really cool. I think he is a surfer like Roger. This weekend when Mom was gone, Jack and I pulled out the Yahtzee game in the basement closet. No-one had played since you and Jack played sometime last year. Your scoresheet was on top.  Mom went to Jack's Veteran's Day assembly. I couldn't go because I have a lot of work. So does Mom - she is better at managing her time (that's a grown up thing). I missed the assembly last year, too. All I could think of today was Jack's Hannukah performance last year with his school in Minnesota. It was the night before everything happened. We saw a lot of friends there. I remember what I ate. I remember being in the car and calling Nana who was with you at the hospital. I remember her telling Mom that she should get back, that you needed her. I remember everything about that night. I wish I had gone with Mom to the hospital.
posted by Allen |
Tuesday, November 11, 2003
Monday, November 10, 2003 This morning I went out to the car and the windows were frozen over for the first time. I instantly thought back to the day you went into intensive care. I was out scraping the ice off the windows of the rental car when Nana called my cell phone and told me I had to get back to the hospital right away. Mom went to New York this past weekend with Helaine and Susan to do girl things. I had a nice time with Jack and Joe. On Saturday Jack went to the movies with Ari and Simon and Jake. It must have felt good for him to be with all of your best buddies. They went to a movie called "Elf." There is a Disney movie out now called "Brother Bear." Something I read about it made me think that Jack would get sad seeing it. A boy's older brother gets killed by a bear. A lot of times someone dies or comes close in Disney movies. Remember how Mufasa died, Bambi's Mom died, Tarzan's parents are killed and the Beast almost died. There is a movie that came out after you died called "Saving Nemo." Nemo's mother dies. The movie isn't too sad, though. We got it this week and I saw it for the first time. Mom saw it with Jack when it was in the theater. I must have babysat Joe. When I watched the movie I got really sad because I know you would have loved it, and it was the first Disney movie to come out after you died that you never got a chance to get excited about and see. The two parts that really got me were when Nemo's dad got upset because he said that he told Nemo that he would always protect him and not let anything ever happen to him, and at the end when Nemo swims back to his dad to give him a great big hug before going off to school. That crushed me. When Jack and Ari and Simon and Jake went to the movies, Joe and I went out to the cemetery.   Your headstone was kinda muddy but I cleaned it off. There has still been a lot of rain. I was listening to this song the other day and thought of you. It is a boy girl song but the words made me think of us. Rain Patty Griffin (1000 Kisses) It's hard to listen to a hard hard heart Beating close to mine Pounding up against the stone and steel Walls that I won't climb Sometimes a hurt is so deep deep deep You think that you're gonna drown Sometimes all I can do is weep weep weep With all this rain falling down Chorus: Strange how hard it rains now Rows and rows of big dark clouds When I'm holding on underneath this shroud Rain Its hard to know when to give up the fight Two things you want will just never be right Its never rained like it has to night before Now I don't wanna beg you baby For something maybe you could never give I'm not looking for the rest of your life I just want another chance to live Strange how hard it rains now Rows and rows of big dark clouds When I'm still alive underneath this shroud Rain Rain Rain There are a lot of evergreen trees at the cemetery. I guess that is on purpose. I don't know if it is on purpose so they don't have to rake a lot of leaves or because they don't want to remind the people who visit of things that die or are dying. No, that doesn't make sense. It has to be the raking. It is too bad, though because the changing leaves are so beautiful. When we were there a pickup truck pulled up not too far from us and 2 hunters with bows and arrows got out. I don't know how I feel about that. I wasn't too psyched that they were going out to kill something even though there are too many deer in Montgomery County. It was just so strange to see them park in the cemetery and head off into the woods. I wasn't expecting that. Mom was pretty sad up in New York. We talked about how we are feeling when we think of you and Mom says her stomach hurts and I feel really weak.
posted by Allen |
Monday, November 10, 2003
Sunday, November 09, 2003 Mom and I are going back to Minnesota this weekend. There is a meeting of the National Marrow Donor Program (they are the people who found someone to give you new blood, remember when we met your donor Beverly?) and Mom was invited to attend. She asked me if I would go with her. I am feeling a lot of things about this trip. I am scared to go. I am worried about how it will feel. Someone I work with asked me why I was going back if it would be so hard. I had described it as part of the grieving process, part of the healing process. I likened it to returning to the site of a plane crash. After thinking some more I now realize what the real answer is. The real answer is that I am desperate to be near you, and Minnesota was the last place we were together, the last place I held you, the last place we spoke. Molly just came back to Minnesota. Her brother Adam is getting big. She has an even littler brother now. It seems like it was a pretty emotional trip for them, too.  November 5, 2003 U breaks ground on new research facility By Geoffrey Ziezulewicz Despite Tuesday’s gray weather, University officials and politicians maintained a sunny disposition at the ground-breaking ceremony for the institution’s new Translational Research Facility. The crowd of 140 people gathered just northwest of the Huron Boulevard Parking Complex near the Lions Research Building to celebrate what officials heralded as a significant step in the University’s return to medical prominence. Attendees included Gov. Tim Pawlenty, University President Bob Bruininks, University researchers and other officials. Funded by state bonds and private donations, the facility will turn scientific developments into patient treatments and therapies. Much of the work will focus on genetics and molecular biology. Academic Health Center Senior Vice President Frank Cerra said the facility should be completed in about 18 months. “I cannot tell you the feeling I had walking across this grass. Where you are sitting is where this Translational Research Facility will be,” he said, referring to a lawn that had been cleared of snow for the ceremony. The facility’s creation is a step forward in the University’s and state’s efforts to be at the forefront of biomedical research and development. Pawlenty declared Tuesday Translational Research Day in Minnesota and said the facility will help move educational discoveries to the marketplace and the patients who need them. He thanked legislators for helping make the facility a reality in tight fiscal times. Pawlenty said the cold, pre-winter ceremonial setting and the University band members on hand reminded him of college football time. Bruininks said attracting and retaining top researchers is not possible without resources such as the Translational Research Facility. It will also provide a “badly needed link” between diverse levels of University science and medicine, he said. “There is not a more pressing need than to support the University of Minnesota,” Bruininks said, thanking all those involved in funding and supporting the new facility. The work of Dr. John Wagner, pediatric hematologist at the University and medical director of the University’s Stem Cell Institute, showcased the importance of the work that will be done at the translational facility, he said.  Molly Nash, left, and her brother help break ground for the University’s Translational Research Facility on Tuesday afternoon at the Lions Research Building. Three years ago at the University, Nash received the first umbilical cord transplant to successfully treat Fanconi anemia. In 1999, Wagner transplanted stem cells from newborn Adam Nash into the body of his older sister Molly, Bruininks said. Molly was suffering from a rare genetic bone marrow disease called Fanconi anemia. Using genetic information from Adam and innovative transplant techniques, Wagner injected healthy stem cells from Adam’s umbilical blood into his older sister. The new cells took over where Molly’s sick cells could not, and Molly’s bone marrow is now full of Adam’s healthy cells. Both children were happy, healthy and vibrant as they helped shovel dirt at the ceremony. As Molly and Adam’s parents choked up, Wagner said the Nash children were an example of the medical possibilities that will come out of the new facility. “This is all really about people,” Wagner said. -------------------------------------------------------------------------------- © Copyright 2002 The Minnesota Daily We'll be okay. I can't wait to see the lakes. I hear it is very cold and wintery up there. Maybe the lakes have frozen over.
posted by Allen |
Sunday, November 09, 2003
Friday, November 07, 2003 I dropped Mom off at JPDS. She was going with Helaine and Susan to New York. I was really sad for some reason. At the front desk I looked at the Student Sign Out sheet that is on a clipboard. All I could think about is how I used to sign you out almost everyday to take you to the doctor or take you home early because you weren't feeling too great. I haven't written on that paper at all this year. posted by Allen | Friday, November 07, 2003 Tuesday, November 04, 2003 This is a page from Jack's journal when we went to Six Flags a few weeks ago. He had a much better time than when we all went and you rode on the Bat Cycle and he was so scared of the Joker.  And this is a page from Jack's journal after we did the unveiling of your headstone. The smiles got turned upside down, even Joe's.  posted by Allen | Tuesday, November 04, 2003 Monday, November 03, 2003 This was your headstone unveiling service October 26, 2003 1. Introduction and Welcome Henry died on Wednesday, December 11, 2002. He is the son of Allen and Laurie. He is the brother of Jack and Joe. He is the grandson of Pat, Sy, Phyllis and Ted. He is the nephew of Jen, Dan, Tracey, Andrew, Abby and Andy. He is the cousin of Joshua, Rachel, Michael, Hannah, Sam and Emma. Today we gather to remember him and to dedicate a monument in his memory. 2. The Little Prince, Antoine de Saint-Exupery  "People have stars, but they aren't the same. For travelers, the stars are guides. For other people, they're nothing but tiny lights. And for still others, for scholars, they're problems. For my businessman, they were gold. But all those stars are silent stars. You, though, you'll have stars like nobody else." "What do you mean?" "When you look up at the sky at night, since I'll be living on one of them, since I'll be laughing on one of them, for you it'll be as if all the stars are laughing. You'll have stars that can laugh!" And he laughed again. "And when you're consoled (everyone eventually is consoled), you'll be glad you've known me. You'll always be my friend. You'll feel like laughing with me. And you'll open your window sometimes just for the fun of it...And your friends will be amazed to see you laughing while you're looking up at the sky. Then you'll tell them, 'Yes, it's the stars; they always make me laugh!'" 3. Mi Ha'ish Psalm 134  Me ha-ish hefafetz chayim, Ohev yamim lirot tov Who is the one who desires life, loving their days, doing good? N'tzor l'shoncha marah, guard your tongue from evil Us'ftecha d'daber mirma, and your lips from speaking falsehood. Sur marah, v'aseh tov, Depart from evil and do good; Bakesh shalom v'rodfayhu, Seek peace and pursue it. 4. There are Stars, Hannah Szenes There are stars whose light reaches the earth Only after they themselves have disintegrated and are no more. And there are people whose scintillating memory Lights the world after they have passed from it. These lights which shine in the darkest night are those which illumine for us the path. 5. Relatives at Judean Memorial Gardens We note that this cemetery, Judean Memorial Gardens, is where a number of Henry's relative's are buried. His Grandma Phyllis Goldberg, Great Aunt Ida Tishman, Great Uncle Ben, Great Grandparents Miriam and Sol Strongin and Great Aunt Ruth. 6. Unveiling and Dedication [We remove the cloth from the stone and read from the stone's inscription.]  In memory of Henry Strongin Goldberg, we establish and consecrate this monument. It is a token of our deep love and respect. He is remembered now, and forever, part of the good in each of us. May his soul be bound up in the bonds of life. 7. Eulogy Laurie Strongin 8. El Malei Rachamim, God Filled with Compassion Let God remember the soul of Henry Strongin Goldberg who went to his place of eternal rest. Please let his soul be bound up with living in the continuum of life, and may his rest be honorable. Grant him abundant joy in your presence, and sweet pleasures at your right hand for eternity. Amen. God filled with mercy dwelling in the heavens' heights, grant perfect peace beneath the wings of your Shechinah, amid the ranks of the holy and the pure, illuminating like the brilliance of the skies the souls of our beloved and our blameless who went to their eternal place of rest. May you who are the source of mercy shelter them beneath your wings eternally, and bind their souls among the living, that they may rest in peace. And let us say: Amen. 9. We Remember Them, Ronald Gittelsohn At the rising of the sun and at its going down We remember them. At the blowing of the wind and in the chill of winter We remember them. At the opening of the buds and in the rebirth of spring... We remember them. At the blueness of the skies and in the warmth of summer We remember them. At the rustling of the leaves and in the beauty of autumn We remember them. At the beginning of the year and when it ends We remember them. When we are lost and sick at heart We remember them. When we have joy we crave to share We remember them. When we have decisions that are difficult to make We remember them. As long as we live, they too will live, for they are now a part of us And we remember them. 10. Mourner's Kaddish Mourners: Yit-ga-dal ve-yit-ka-dash she-mey ra-ba Be-al-ma div-ra chir-u-tey Ve-yam-lich mal-chu-tey Be-cha-yey-chon uv-yo-me-chon uv-cha-yey de-chol beyt yis-ra-el Ba-a-ga-la u-viz-man ka-riv ve-im-ru a-men. Congregation: Ye-hey she-mey ra-ba me-va-rach le-a-lam ul-al-mey al-ma-ya. Mourners: Yit-ba-rach ve-yish-ta-bach ve-yit-pa-ar ve-yit-ro-mam ve-yit-na-sey Ve-yit-ha-dar ve-yit-a-leh ve-yit-ha-lal she-mey de-kud-sha Be-rich hu Le-ela le-ela mi-kol bir-cha-ta ve-shi-ra-ta tush-be-cha-ta ve-ne-che-ma-ta da-a-mi-ran be-al-ma ve-im-ru a-men. Ye-hey she-la-ma ra-ba min she-ma-ya Ve-cha-yim a-ley-nu ve-al kol yis-ra-el ve-im-ru a-men. O-seh sha-lom bim-ro-mav hu ya-a-seh sha-lom a-ley-nu ve-al kol yis-ra-el ve-al kol yosh-vey tevel ve-im-ru amen. Mourners: Let God's name be made great and holy in the world that was created as God willed. May God complete the holy realm in your own lifetime, in your days, and in the days of all the house of Israel, quickly and soon. And say: Amen. Congregation: May God's great name be blessed, forever and as long as worlds endure. Mourners: May it be blessed, and praised, and glorified, and held in honor, viewed with awe, embellished, and revered; and may the blessed name of holiness be hailed, though it be higher by far than all the blessings, songs, praises, and consolations that we utter in this world. And say: Amen. May Heaven grant a universal peace, and life for us, and for all Israel. And say: Amen. May the one who creates harmony above, make peace for us and for all Israel, and for all who dwell on earth. And say: Amen This is what Mom said for her eulogy. She was able to read the whole thing which was very hard. Everyone was crying. Mom's Eulogy On October 25, 1995, just eight years ago yesterday, my son Henry was born. Two weeks later, he was diagnosed with Fanconi anemia, a disease that threatened to take his life, and challenged us to live well despite it. And live well, we did. Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile was a call to action to smile back, laugh along, and dance with him. Instead of associating each doctor with one who inflicts pain, Henry had a special nickname for each. Dr. Gillio became Dr. Silly-o; Dr. Wagner became “Dr. Have you Wagged Your Tail Lately?” Henry didn’t associate hospitals with procedures, but rather, by their proximity to the things that he loved to do. So, trips to hospitals in or near New York didn’t mean bone marrow biopsies and surgeries, but rather opportunities to ride the black panther on the carousel in Central Park or to go to Joker’s Child, the best Batman store ever; Minneapolis was not about Henry’s seemingly endless transplant-related hospitalizations, but was synonymous with the Mall of America. Despite the relentless wrath of his disease, Henry had the physical and emotional strength to fight back. His ear-to-ear smile and joyous laughter were far more noticeable than his many surgical scars and low-platelet related bruises. He suffered plenty of setbacks and spent more nights in the hospital fighting against whatever Fanconi anemia would throw his way, but just when it looked like the disease was too tough of an opponent, Henry would rise like a phoenix from the ashes and get back to the life he chose to lead. He would transition from the hospital to running a lemonade stand in a matter of minutes; from the intensive care unit to hitting a baseball over our neighbor’s fence. Henry was a superb athlete. By age three, he could traverse the monkey bars over and over again, triggering disbelief from other parents and envy from their children. Just days prior to departing for Minneapolis for his transplant, Henry scored the winning goal of the Dolphins’ season closing soccer game. He secured a punching bag and boxing gloves in his transplant isolation room to help regain his strength while he recovered from the negative effects of the radiation and chemotherapy. Once he was discharged from the hospital, Henry asked us to get a karate instructor so he could begin working on his white belt basics. The power of the chemotherapy was apparent by Henry’s bald head, but it was powerless against his determination to master new skills, build his strength and defeat Fanconi anemia. With each blood draw, blood transfusion or other medical treatment, Henry would grin and exclaim “Let’s just do it” so he could get out of the clinic and get back to living his life. Seven months after Henry’s transplant, we took him out in public for the very first time to the most “Henry” destination in Minneapolis, the Mall of America. As we walked past the indoor rock climbing wall, Henry got that look of determination in his eyes. With IV lines hanging out of his shirt and a protective mask on his face, Henry practiced numerous times on three separate occasions, first making it halfway, then two-thirds, over and over again. Finally the day before we were to leave Minneapolis, Henry wanted to go back and try one last time. He would settle for nothing short of victory. With a burst of energy, Henry made it all the way to the top and rang that buzzer symbolizing to everyone in Camp Snoopy that he made it. Fist in the air, he made his descent and once on land, did his hip shaking, ear-to-ear smiling, “oh yeah” dance. During Henry’s bone marrow transplant recovery, he and Jack developed an assessment scale of Henry’s health status that ranged from “Not Good” to “Super, Duper Better.” Every day, Henry worked towards Super Better. He possessed a level of patience that eludes me, and thankfully, was willing to suffer through plenty of Not Good Days, recognizing them as a necessary means to an end. He stayed focused on the end game of Super, Duper Better, settling for moments or hours of great times here and there, as he worked hard for it to become his way of life. Henry taught his friends how to negotiate the monkey bars and hit a waffle ball across our street, and shared his encyclopedic knowledge of everything Batman and Pokemon. As he got older, Henry’s lessons went beyond the typical little boy stuff. At a school assembly, his fellow first-graders shared what they had learned from Henry, ranging from teaching them all about whales and nature; to basic truths including to love super heroes and brothers, to smile a lot, and my favorite, “to take a good nap when we need one.” For adults, Henry was a walking motivational speaker. Despite the adversity he faced, he never felt sorry for himself. His positive attitude and courage inspired people to be and do better, and as a result, thousands joined the National Bone Marrow Registry, collectively donated money to support research into Fanconi anemia, and noticed things about their children and themselves that they may otherwise have overlooked. Henry had an ability to enjoy all the enjoyable things in life, even when they were sorely outnumbered by the hardships, and he taught those around him to do the same. One of Henry’s doctors described him as a 30 year-old trapped in a child’s body. He was so mature that he was asked to present to a group of medical students about how to care for pediatric patients. Henry often diagnosed his own ailments, flushed his own IV lines and told us when he needed to be checked into the hospital and when he was well enough to leave and head for the beach. He was honest and open and wise beyond his years, but possessed the innocence and playfulness of a child. As you know, Henry was fascinated with Batman. Like Batman, Henry’s special powers were his strength and intelligence which he developed through hard work and training. While Batman faced numerous adversaries including the Joker, Ra’s al Ghul, Riddler, Two-Face, and Poison Ivy; Henry faced only one, Fanconi anemia. Batman had Robin; Henry had Jack, Joe, Allen, me and thousands of friends and admirers willing to join his troupe of superheroes and fight for his life. Perhaps even more than Batman, Henry was a master of illusion. He made everyone believe that anything was possible. The only thing that seemed impossible was that inside his beautiful body, every single cell possessed a genetic defect so deadly that one day he could die. On December 11, 2002, nearly one year ago, the impossible happened. Fanconi anemia took our son, Jack and Joe’s brother, and your friend away. The fact that every picture has been taken, every word has been spoken and that I will never again be able to hold my son’s hand or read him a bedtime story and kiss him goodnight is close to unbearable. But my broken heart is restored by the feeling of incredible good fortune that I got to be Henry’s mother. The impact of Henry’s life astounds me. I think he did more in his short life than most do in eight or nine decades. One of Henry’s doctors, Dr. John Wagner, recently told me that Henry taught him things that will unequivocally help other children with FA facing transplant today and tomorrow. He said, “Every survivor at some point must thank their lucky stars that one of them happened to be Henry.” The day Henry died, I got the following note from my dear friend Sharon Harari in Tel Aviv. Her son Amitai has Fanconi anemia. Allen and I met them in New York and introduced them to the doctors working with us on preimplantation genetic diagnosis. She wrote: The night Henry died, I had this feeling just like I did on the millenium night. In my head I knew that after midnight our lives would continue just as they did, but my gut felt like the world might be coming to an end. If it wasn't for Henry we would have never met you. If it wasn't for you we would have never made it through preimplantation genetic diagnosis. If it wasn't for PGD we would have never had Alma. If it wasn't for Alma Amitai would probably be dead today. We believe Henry saved our son's life. And, just a couple of months ago, Allen and I received this letter: Dear Allen and Laurie, I don't think you know me but boy I sure know you and Henry. I have been struggling with the right time to write this letter. I am the father of Hunter Kelley. Hunter too has Fanconi anemia. For a year and a half we searched for answers as to how to help Hunter. In 2001 we learned that PGD was now available to FA (A) patients. It was about this time my wife (Christie) read your New York Times Magazine article. We immediately decided we had to give PGD a try. After 4 cycles and many ups and downs we got pregnant. Eggs were implanted on Easter Sunday of 2002, and on Dec. 9th, Cooper Kelley was born. A perfect match for Hunter. On January 21 Hunter underwent a Sibling Matched Cord Blood Transplant at University of Minnesota. Today we are back in Birmingham and Hunter is outside shooting basketball. The reason for writing this letter is to thank you and especially thank Henry. You see if we had never read that NY Times article we would have never tried PGD. Hunter was to the point he needed a transplant and we didn't have long. Your determination to succeed at PGD gave us inspiration. Henry did not die in vain. Henry is a pioneer who has and is saving lives everyday. I can only imagine what it is like to lose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son's life. Thanks Henry Goldberg, your sacrifice has saved many. Randy Kelley Henry, you always said you wanted to be a superhero when you grew up. Your wish came true.
posted by Allen |
Monday, November 03, 2003
Saturday, November 01, 2003 We went on a hike with Jack and Joe through the woods of Glover Archibold Park at the end of 39th Street. It was fun. The leaves were falling from the trees like snow. The difference was they made a lot of noise as they fell. I thought back to a memory I have of me carrying you out of the house while it was snowing. I told you to look up and try to catch snowflakes in your mouth. I was pretty worried about stuff that went into your body so that was either before your transplant or I thought the snow that was falling wasn't too dirty or polluted. Sometimes I got carried away. There was one time after you had your transplant and we were in your hospital room and I was trying to get you to a pill because your blood pressure had gotten too high. It was the middle of the night and neither of us was getting any sleep and by accident I dropped it on the floor. I picked it up and gave it to you to take. After you took it your blood pressure went down but I couldn't shake the idea that you might get sick (and maybe die) from a germ that got on the pill when it hit the floor. I held my breath for days worrying that you were going to get an infection. You didn't. Jack learned two things on the hike  1. How to blow through an empty acorn top and whistle 2. How to burn a leaf with a magnifying glass and the sun. I keep this book right by my bed.  Maybe one day Jack and I will hike the Appalachian Trail. I told you in one of my earlier letters that I had wanted to do it with you when you got better. Maybe Jack and I can collect pledges for every mile we hike and raise money for the Hope for Henry Foundation. We'll see. Whatever he wants to do. posted by Allen | Saturday, November 01, 2003 |
|
|
|
|
|
|
 | ||||
| |||||