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Miracle Workers- Day 2

The next two miracle workers are a team. They are neonatologists at St. Barnabas Medical Center.


Dr. Santo Domingo and Dr. Tien, Neonatologist at St. Barnabas Medical Center


When Aidan was born he had breathing issues. Our poor baby boy was on oxygen and was hooked up to IVs when he was just hours hold. We couldn't even hold or touch our baby for four days--and even then, we had to be so careful because of all the wires he was hooked up to. Aidan spent eight days in the NICU. One of the hardest things I ever did was leave the hospital without my baby.

Drs. Tien and Santo Domingo cared for him in their NICU with caring, competence and compassion, along with all the NICU nurses. I remember when Dr. Tien would come to my hospital room to see me, he would always touch my hand and try to make me more comfortable with the whole situation. Both doctors acted like it was their own children in that NICU.

Fortunetely, Aidan's story has a happy ending. He left the NICU eight days after he was born a perfectly healthy baby.

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posted by Sandi at 8:30 AM.

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Genes and Children

I want to thank everyone for all their support and well-wishes. I can't believe the "friends" I've made through this blog and the support I've received.

My recovery is much slower than I expected. Of course I had nothing to base it on. I thought it was going to be like a C-section. The good news is that my recovery is not slower than anyone else expected. I guess I set my goals too high.

The scariest part about the news I received yesterday is thinking about the future of my children. They have a genetic pre-disposition for pancreatic cancer from me, and all the oncologists we spoke to believed that John's cancer was also genetic. For him to have gotten it so young was a big factor in that assumption. I learned when John was sick that his grandfather had "back cancer". John had cancer in his back, too. I strongly suspect he had pancreatic cancer that had metasticized to his spine, just like John.

So now my children are genetically pre-disposed from both parents. Dr. Frucht, my gastroenerologist at the Pancreas Center, assures me that by the time we need to worry about them, there will be many, less invasive tests. I hope so.

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posted by Sandi at 8:40 PM.

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The Language Police

I realized today I need to watch what I say in front of the kids. My mother asked Aidan what he wanted for his birthday and he told her, "Friggin' nothing."

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posted by Sandi at 8:02 PM.

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Sensitivity

While my children's current daycare center is very sensitive to the fact that their father had died, I am not sure all the schools they will attend will be the same way. Here is an excellent article on the subject.

http://www.rethinkingschools.org/archive/19_03/fram193.shtml

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posted by Sandi at 11:14 AM.

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Fishing

Aidan has been asking me to take him fishing. I've never been fishing. His father loved to fish and had plans last summer to take him to the pond in our neighborhood fishing. He had even bought him a fishing pole. We all know how those plans turned out, though.

Thankfully, Aidan's Uncle Patrick (my husband's brother) loves to fish, too. Here's a picture of them with the fish Aidan caught.

He was so excited and caught over a dozen fish that day.

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posted by Sandi at 9:09 AM.

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Teacher Conference

Today I am having a meeting with Aidan and Ava's preschool teachers. I am dreading this meeting. I am not dreading it because of anything the teachers are going to tell me about my children. The kids are doing really well. Ava never stops talking unless she's singing and is as happy as can be. Aidan is very smart, a bit stubborn, and very funny--sometimes in that "he's in trouble because he shouldn't do that, but I have to hide the fact that I'm laughing" way.

I'm the one who asked for the meeting. On June 17, I will be going into the hospital for 5 days to have surgery. My brother and sister-in-law and their baby will move into my home to take care of the kids. Aidan's psychologist recommends that I tell them the truth about my surgery and going to the hospital. I want their teachers to know what's going on because they may be out of sorts while I'm gone. And they may be very scared.

Their only experience with hospitals has been their father. Each time he went into a hospital he came back worse--first using a walker, then a wheelchair, then he died.

It's not going to be that way with me, but they don't know that. They can only draw from past experience. I can reassure them, but I doubt they will be convinced until I am home again.

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posted by Sandi at 11:51 AM.

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Single Moms Part 2

I posted previously about single mom blogs and how they tend to sugarcoat and gloss over some very serious issues regarding single parenting. Here is one that doesn't. Tiffanie at Gotta Be Me just posted about providing for our children vs. parenting our children. It hit home for me. It's honest and heartfelt. Check it out if you have a chance--and I don't think you have to be a single parent to relate to it.

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posted by Sandi at 5:37 PM.

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Surgery

I have posted about my experiences at The Pancreas Center at Columbia University Medical Center. I have posted about the small, benign cyst they found on my pancreas. In February, I met with a surgeon at The Pancreas Center and while he was very adamant that this cyst is benign, he was also adamant that although in another patient they would most likely leave it alone, because of my family history it has to come out. I agreed with that. I had already spoken to Dr. Frucht about it. I had sought a second opinion from Dr. Teri Brentnall at the University of Washington. I believe it should come out, too.

So, on June 17, I will check into New York Presbyterian Hospital and Dr. John Chabot, Director of the Pancreas Center, will perform surgery, removing 35-40% of my pancreas.

I will spend 4-5 days in the hospital and it should take me about another 2 weeks to fully recover. The surgery itself has a 0% mortality rate and the good news is that it can be done laparascopically.

I should have no long term quality of life issues. I may have a smaller threshold for developing diabetes later in life because part of my pancreas will be gone. Dr. Chabot explained it this way: rather than developing diabetes if I were 50 lbs. overweight, my threshold may now be if I become 30 lbs. overweight. Those of you who know me in person are probably laughing at this example, as was my mother. Those of you who don't know me in person, this is funny because if anything, my weight problem has been that I tend to be underweight, especially during periods of stress. Basically, I really am at a very low risk for ever developing diabetes, and if I do, so be it. People live a long time with diabetes. All I need is 25- 30 years, so that my children are grown and independent.

Here is my biggest fear regarding the surgery. What am I going to tell my children? I was honest with them about their father. I explained to Aidan that Daddy had to go to the doctor and would be away for a while, like when he went on business trips. Aidan is well aware that the end result of all Daddy's trips was his death. I have no idea how I can explain my absence for 4 days and reassure him, and Ava, that I am NOT going to die.

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posted by Sandi at 8:30 AM.

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Captivity

While in Punta Cana we took advantage of one of the many excursions Club Med had to offer. We went to Manati Park with the kids. It was kind of a poor man's zoo. Since the Dominican Republic is such a poor country, that makes sense. There were a lot of birds and reptiles at this "zoo", but the main attractions were the shows. They had an Indian Show that was supposed to represent the ancient rituals of the original tribes from the Dominican Republic. The girl with dyed pink hair and the one with the tramp stamp kind of ruined the authenticity, though.

Then they had a dolphin and sea lion show. Throughout the whole thing I kept thinking, why am I never at one of the shows where the animal turns on the trainer. That would be so cool.

Come on. Think about it. Can you really blame these animals when they do turn on their trainers? What do you think is going through their heads? Gee, I really LOVE living in captivity performing all these stupid tricks for these stupid people. Thank God someone rescued me from the wide open ocean for this shit.

Then I started to think about our resort and how nice all the workers there were? What are they really thinking behind their smiles and their "bonjours", "holas" and "hellos"? Fucking rich-ass American, Canadian, European tourists...think they're better than me. I could kill you in your sleep and no one would ever find me.

Yes, this is the stuff that goes on in my head while having a nice day out with my kids at a a poor excuse for a zoo.

The highlight of the trip for the kids was the horse show. At the end, Aidan got to ride a pony. Don't even get me started on what I think was going on in that pony's head.

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posted by Sandi at 1:00 PM.

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Single Moms

I hate mommy blogs. I really do. The only thing I hate more than mommy blogs are single mommy blogs. At the risk of offending a large portion of the audience I write for on Singlemindedwomen.com, I will say it again. I HATE SINGLE MOMMY BLOGS. Here is why.

They don't tell the truth. They are defensive regarding their single mom status. They ignore the realities and statistics of raising children without a father. They act like there is absolutely nothing wrong or unusual about their family situations. And they appear not the least bit concerned that the odds are stacked against their children.

Yes, Barack Obama was raised by a single mom. He is one presidential candidate. Would you like to measure that against the number of prisoners who were also raised by single moms? Ok, that's an extreme, but let's face the reality here--raising children as a single parent is NOT the ideal situation.

I am going to say what these other women refuse to acknowledge--being a single parent sucks. I love my children more than anything in the world, but I am tired all the time. I take care of everything--paying the bills, making all the decisions, taking care of their needs, getting them to doctors. I like having someone to share those responsibilities with. I like being able to say on a Sunday morning, can you get up with the kids, so I can get a little more sleep? I loved that my husband would take the kids outside to play in the spring and summer while I could get dinner ready in peace. And I am at least a single mom with means. I have the ability to hire babysitters and housekeepers and nannies to help me. Many single moms are not in that situation. Yet, I still get frustrated; I'm still exhausted all the time; I'm still racked with guilt about what my children are missing and what they will continue to miss as they get older.

I also, quite honestly, I feel a child's relationship with his or her father is important. I think many of these women dismiss the importance of that relationship. I know some of the fathers of these children refuse to be in the picture. But again, on their blogs at least, they never seem to question why they choose to have relationships with men who disappear when they become pregnant or when the child is born. I read some of these blogs and think, shouldn't you be questioning your judgement of men? Once, you make a mistake; more than once, it's a pattern, one that needs to be broken.

But there seems to be no introspection. It's all good and everything is wonderful and they stick their heads in the sand and never concern themselves with the hard questions. They sugarcoat the difficulties of being a single parent.

I can assure you of one thing. My 17-year-old babysitter will NEVER become a single parent. She sees how hard it is everyday. She adores my children and knows that I love them with all my heart, but she sees firsthand how exhausting and how difficult it is. She does not see a sugarcoated, happy-go-lucky version of single parenthood.

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posted by Sandi at 9:00 AM.

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Instincts

I have good instincts. Twice in my life I was talked out of following my instincts and regretted it both times.

The first time was the summer after my and John's broken engagement. I was seeing a gentleman (boy, do I use that term loosely). It was a long distance thing, so it never got very serious. Our families were friends and our respective mothers got us together. He was smart, good-looking; he seemed very nice. We got along very well, but something didn't sit right with me. It began when he revealed a bit about a past relationship. Listen, I was no one to really judge--I was pretty much a runaway bride. But I had concerns. When I voiced them to friends and family they dismissed my concerns, feeling that I had been burned in my last relationship and I was looking for problems. I wasn't, but I let everyone talk me into continuing things.

Thank heavens I never got in too deep.

I slowly found out that the past relationship was with a married woman--and he was the cause for ending the marriage--and she was about 20 years older than him--and had teen-age children--and her husband was a superior to him (he was a naval officer). I am not the moral police, but there were a lot of ANDs in that revelation. There was even more, but for the sake of this individual's privacy I won't go further. I happily ended things. But I should have followed my instincts immediately.

The second time I should have followed my instincts was very recently. About a month ago, my family thought it would be a great idea to go out to brunch for Mother's Day. I did not think it would be a good idea.

My reasoning was that a buffet with my two kids was not going to be a relaxing Mother's Day for me. A sit down lunch where we are being served would be much better. A barbecue at someone's home would be ideal.

I was vetoed and talked into going.

My original reasoning was flawed. My children became very used to buffet dining on vacation, and my mother was a huge help.

My instincts were correct however. The day before Mother's Day, I had an anxiety attack and was either in tears or on the verge of tears the entire day. I couldn't go out to brunch and watch all the other intact families with children celebrating.

We had just left a birthday party where my son announced that his dad died, really bad--he got hurt in his back and then died. The other children stared at him and the parents' mouths dropped. I welled up with tears. I called my mother on the way home and told her I couldn't go to brunch the following day. No one argued with me this time.

In the end, I did go to brunch. I woke up the next day feeling a little (not much) better, and decided my children would love to see their aunt, uncle, cousin, grandmother and great-grandmother. As much as it was Mother's Day, it still wasn't only about me. I cried the whole way home though.

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posted by Sandi at 9:15 AM.

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Mother's Day

This will be my first Mother's Day without John. I told him last year that I am not his mother and he did not need to buy me a gift. The kids were at an age where they make me something at daycare and that is just fine with me. When they get older, his responsibility was to take them shopping for a Mother's Day gift from them.

He didn't listen, though. Every year since Aidan was born my husband bought me something beautiful for Mother's Day. The year Ava was born, he bought me my favorite gift, a locket with an engraving of a mother and child on the front.

I know the children have been working on their Mother's Day gifts at daycare this year. Aidan is so excited he wanted to give me his gift yesterday, but his teacher talked him into waiting.

I'm not too concerned about Mother's Day. It's Father's Day I'm worried about.

Last year Aidan made John a "#1 Dad" hat and Ava made him a t-shirt with her handprints on it. I knew it was his last Father's Day. Even then, I stressed about the following year, and now it is creeping up on us.

The children have three very active uncles in their lives--my two brothers and John's one brother. My youngest brother and John's brother are Aidan's Godfathers (yes, he has two Godfather's instead of a Godfather and Godmother--I never do things traditionally). My other brother is Ava's Godfather.

I will be making another call to daycare as the day gets closer, although they are so sensitive to our situation that I wouldn't be surprised if they contact me first.

While they can make Father's Day gifts for their uncles, I worry that they will be hit hard by the loss of their father as all the other children make gifts for their fathers.

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posted by Sandi at 8:59 AM.

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A Clone


Here's picture of Aidan, Ava and me from our vacation.

Every day Aidan reminds me more and more of his father. Ava's personality is much more like mine, but Aidan is his dad through and through.

On Monday the daycare center had a Cinco de Mayo celebration and they had a pinata. Aidan came home with a bag of candy and spent the rest of the evening plotting how he was going to get his hands on all the chocolate candy (I let him have one piece after dinner). He had no use for the rest of the candy; he only likes chocolate.

John was the same way. John LOVED anything chocolate, but he had no use for anything else sweet. He used to say, "If it's not chocolate, why bother?"

Aidan also has his dad's sense of humor. John was very funny. Aidan has become quite the class clown at daycare (I'm not really sure if this is a good thing).

And he has his dad's stubborness. This I could live without.

Mostly, though, Aidan looks like his father. See?






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posted by Sandi at 9:27 AM.

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The Bravest Man I Knew

John has spinal surgery at the beginning of June. He was forced to wear a contraption that looked like this:



It was hideously uncomfortable for him.

After he recovered from surgery he began chemotherapy and radiation. Oncologists don't usually like to do both at the same do. There's only so much the human body can handle and both treatments basically poison your system. But John needed to do both.

He also needed a walker to get around (eventually he would need a wheelchair).

Besides all of this, John was still a dad first and foremost.

In July, we decided to take the kids to the Land of Make Believe, which is a small amusement park about an hour from our home.

I gave John the option of not going, but he was determined to come with us.

He re-arranged his radiation appointment to first thing in the morning, so we could get to the park when it opened.

We spent the morning putting the kids on rides and John videotaped them. We had lunch around noon and then we headed off to the wading pool to take the kids swimming. John was tired by then and went back to the car to listen to sports radio. He was emphatic that we not cut the day short for him and he would be fine in the car.

When we did get back to the car, he was napping.

My mother says to this day, he had balls of steel.

I cannot even begin to imagine the pain and discomfort he was in. I cannot even imagine the exhaustion he felt from all his treatments. But this man loved his family so much, he ignored all of that to spend a fun day in an amusement park with his children.

He was the bravest man I will ever have the pleasure of knowing.

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posted by Sandi at 9:09 AM.

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Happy Birthday to Me

Oh, even the best laid plans. Yesterday was my birthday and I was home with two sick kids, both suffering from a stomach virus. Actually I'm stuck inside all weekend with my two sickies. The only consolation I take from this is that it didn't happen next weekend when we are leaving for a one week vacation to Punta Cana.

I think I feel more badly for Aidan than for me. He was so terribly overcompensating for my birthday because his dad isn't here. He invited all his friends from pre-school and gave them all jobs to do--decorating, games, making a cake. It was really cute (thank God none of them really showed up).

His and Ava's teachers I think also felt badly. He talked up my birthday so much and then I called to ask if they could let the kids make me a little something. They did have the kids make me cards, but they went above and beyond anything I ever expected--they had a bouquet of balloons from Aidan (Aidan picked them out which is why I have Spiderman and Batman balloons) and a beautiful plant from Ava. I had tears in my eyes over the kindness and generosity they demonstrated.

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posted by Sandi at 12:43 PM.

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Birthday Gifts

Yesterday I got a birthday card from my grandmother. Thanks Nanny (ok, so she's 88 and doesn't even know how to turn on a computer, never mind read this blog). Aidan started talking about my birthday when he saw the card. I mentioned before that my birthday is coming up and how there is no one to take my children shopping to get me a gift and a card. Well, this upset Aidan a bit. He really wants to give me a gift. He then decided to give me one of his balls, his orange ball to be exact. I started crying.

Today I decided to take care of this little issue. I called his pre-school teacher and explained the situation. I asked if he could have some time to make me a card or a little something for my birthday. She told me absolutely.

I think this solution will make both Aidan and I feel better.

As for my birthday, my friends and family have all that under control. My oldest and one of my dearest friends is coming over to my house with her family to celebrate with me on Friday. On Saturday, my brother-in-law and sister-in-law are taking the kids to their house to spend the night and I am spending the day and the night with my mother. We have no real plans (my decision), but I know we will enjoy just playing it by ear and spending time together. Besides, as much as I love my children (and I don't know where I would be right now without them), it will be nice to have some time away from them. Sometimes a mommy needs a break.

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posted by Sandi at 9:17 AM.

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Children's Shows

This weekend Aidan and Ava attended a birthday party. The theme was Backyardigans.



I have been subjected to repeated episodes of Dora, Diego, Max and Ruby (which I happen to truly enjoy). I have found myself quoting the Berenstain Bears to my son ("to have a good friend, you need to be a good friend") and expounding on the theme of the Wonder Pets (Teamwork).



I have thanked God that my children were never into, as my brother calls him, that Big Purple Hemorrhoid, Barney, although I have had to suffer through the equally annoying Elmo (what is with him constantly referring to himself in the third-person?). There was no Elmo when I watched Sesame Street and when did everyone on Sesame Street discover that Mr. Snuffelupugus was real? The last I had seen the show, no one believed Big Bird.



However, my kids have never really been into the Backyardigans, and so I never paid much attention. Now that I had them staring at me for an entire 2 hours, I have just one question:



What the hell is this?


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posted by Sandi at 8:58 AM.

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Number One Mommy

Today is March 31. Next month I will turn 40. I am not looking forward to my birthday. It's not the age. I couldn't care less about being 40 (after all it's the new 30).

If I had turned 40 last year I would have been thrilled. I would have been thrilled to have reached 40 and achieved such a fulfilling life. I had a wonderful husband I loved, two beautiful children and a job I truly enjoyed. When John asked what I wanted for my birthday last year, all I wanted was a day out with him. And we had that. We went to see my favorite actor in the world, Philip Seymour Hoffman in Jack Goes Boating at the Public Theater in New York and then went out to dinner.

At 30, I pictured myself turning 40 one of two ways: quietly with my husband, much like the way we spent my 39th birthday, or throwing myself a fabulous party with my girlfriends. I didn't know whether I would ever marry at that point and didn't care. I was willing to take whatever life threw at me--or so I thought.

I NEVER imagined spending my 40th birthday as a widow with two young children.

It's not having an adult day out I will miss. It's not receiving a beautiful gift from the man I love (John always went with jewelry). It's the fact that my husband, the father of my children, will not be here to take the kids out and pick out a "World's Greatest Mom" coffee mug for me (or whatever novelty gift that declares me to be number 1).

The major holidays are covered at daycare/preschool. The children will make me something adorable for Mother's Day, as they did for Christmas and Valentine's Day. But daycare isn't going to cover my birthday. That's a dad's job.

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posted by Sandi at 8:52 AM.

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Two Years Ago Today...

Ava was born. She was born at 1 pm via c-section and weighed 10 lbs. 15 ounce. Yes, she was almost 11 pounds! When the doctor pulled her out of me she exclaimed, "She's a toddler!". Shockingly, Ava was 10 days early. Who knows how much bigger she could have been.

As John and I drove to the hospital that morning, we had so many hopes and dreams for our future and the future of our children. Never in a million years would we have thought that two years later I would be raising our daugher and andher big brother without him.

Was the radical cell that caused his cancer in him then? There is know way I will ever know the answer to that. There is no way we could have foreseen the speeding train barreling down on us. We lived in that moment, so happy to be adding a baby girl to our family.

I'm thankful for that, for our ability to live in that moment. I'm thankful we didn't know what was coming. If we had, we never could have experienced the pure joy that was the birth of our daughter.

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posted by Sandi at 8:37 AM.

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A Little Comedy

Aidan: Mommy I have a joke for you. Who tucks a mummy in bed at night?


Me: I don't know, Aidan, who?


Aidan: A mommy! Ha! Ha! Ha!



Aidan again: Mommy, knock, knock.


Me: Who's there?

Aidan: Orange banana. Ha! Ha! Ha!



My son the comedian.

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posted by Sandi at 8:50 AM.

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