Lego Woe

I know that people live in their own bubble. We're all guilty of this. Of not really being involved or interested in something until it affects us personally. And that's ok. People get affected by stuff every day and then they are motivated. It would be awesome if people got more internal motivation but whatever. However it comes, we'll take it. I've been going to all kinds of charity events lately. I've realized, that while the cliché- "Everything happens for a reason" is annoying, sometimes it's true. Sometimes a famous person gets a disease and becomes a crusader to bring money and awareness to it. And sometimes a big company pulls a big, disappointing act where you get a bigmouth like me to spread some awareness.

I'd never thought much about someone having a "port" until Jocelyn, my friend with cancer, had one put in to deliver her chemo medication. It never looked odd to me, I guess because I'm an adult. And to some degree understand what it does. I never really thought about what it would look like to a child and how a child who has one might feel in front of other kids...

The following is Evan's story, as written to me by his mom. Be prepared for some extensive but explained medical terminology. I thought it was important to understand the whole scope of his story to get to why I'm doing this blog entry. Evan just turned six years old this past summer.

He was diagnosed with severe hemophilia at less than 48 hours old. The hospital does a heel test to newborn babies for all kinds of illness, disease, syndromes, etc at some point in your short stay after giving birth. A baby without hemophilia bleeds for a second then stops. Like a "normal" needle stick. Evan's PKU heel stick didn't stop bleeding. His foot bracelet had fallen off and the nurse that came in to check on him saw it on my bed. She offered to put it back on him while bringing him to the place where babies stay in the room since he'd just finished eating and fallen asleep.

When she unswaddled him she was alarmed because the feet and legs up to the mid-calf area were soaked in blood on his clothes. He went to the nursery where they held pressure for an hour before he clotted and stopped bleeding. He was brought to the NICU for tests that later confirmed his diagnosis.

At age sixteen months, E had a head bleed. It was a subdural hematoma in the left frontal and parietal lobes. It was a spontaneous bleed, meaning there was no injury to have caused it, that caused loss of muscle control, speech ability, and seizures. These seizures were ruled out as being caused by epilepsy, though he was medicated with anti-seizure medication for 12 months following this whole ordeal. We stayed two nights/three days in PICU, then were transferred to regular floor for the last 36 hours. During this time a PICC line to administer his factor (clotting medication) at home was unsuccessfully attempted to place twice. A PICC line is a peripherally inserted central catheter. It's a form of intravenous access that can be used for a prolonged period of time. Because inserting the PICC was unsuccessful, it was necessary for him to go through radiology, and under general anesthesia, for the second time in 24 hours, in order to have it placed. When he was discharged, we were told of the precautions with the PICC and to bring him back for possible infection if he gets fever of 100.5 or higher (which is the same guideline we have been following since he got his port). I was to infuse him every 8 hours through the line for the following four weeks on this regimen.

Three weeks after we got home, he had a fever, so went to hospital to be sure there wasn't an infection in his PICC line. No infection, but fever was terribly high. He suffered two seizures on this trip. First one he was blue/purple from not breathing. Took him a while to understand anything after nurse gave CPR and got him to start breathing again. Had another CT scan and found that the hematoma from three weeks prior had absolved. That seizure was considered a febrile seizure by the doctor.

He had surgery for his first port to be placed three weeks later. Surgery was easy, and recovery was good. Stayed in hospital three days. Has had several multiple night stays to rule out port infection due to fever.

When he was 4 his port was constantly squirting blood out whenever I would take the needle out
after infusing him. He was terribly bruised and it was tough not to go through the bruise anymore to access him (which I am not supposed to do). Had an IV placed in his hand that we went home with for one week to let the port rest. Blood spatter continued after we rested, so we did a dye study (where he goes in with a radiologist and they inject dye into the line while watching via some kind of ultrasound to see if the dye leaks. It did leak. The port line had pulled out of the aorta, so the meds weren't being distributed properly. He had four weeks of IVs in the hand. We'd go for a new one every Monday and he'd be on a board and wrapped up all week long so we could still infuse while waiting for surgery.

Evan got the port taken out and replaced July 2010. Surgery was scary for him this time, but recovery was excellent. He has had a few more hospitalizations for fevers with the new port, including one that caused him to miss the first two days of kindergarten last year.

In his life, Evan has never complained about pokes (as we call them). He has never cried or jerked away or fussed when I have come at him with a needle. He has been just as amazing with getting his blood drawn and IVs started. The only time he ever fussed was in the ER during the head bleed debacle, but mostly I believe it was because he just didn't know what the hell was going on.

He never really said much about the port or the infusions until the end of pre-k when he was invited to a classmates birthday party. He had always been cool at the beach or swimming in the pool with his cousins, and thought it was kind of cool when they'd watch him be infused. But at this party, he definitely felt different with his port. I don't recall anyone asking him about it, but that doesn't mean that one of the kids didn't.

Since then, he has had a tough time feeling like he's "normal". He doesn't like to swim in front of strangers or friends that aren't family. He doesn't want anyone to know about his port or his hemophilia.

He went through a period of saying that he hates hemophilia and wishing that he didn't have it so he wouldn't be different.


Who reads a story like this and doesn't feel touched? At least if you're a parent, you should. I have a boy not too much younger than Evan. It breaks my heart when a kid in his class tells him he isn't his friend and my son is upset about it. So I can only imagine having a kid with a physical difference that makes him feel self-conscious. Sure, we all have something. My two friends told me in Hebrew school that my ears were so big they looked like soup cups. Kids get made fun of for big ears, big noses, lazy eyes, etc. But to me, something like a port is different. Because there is real, life-threatening issue that goes along with reasons for needing a port, especially with hemophilia. Which, admittedly, I knew little about until my friend Sara & her son Evan, because it didn't affect me directly. I've never known anyone with hemophilia. BUT, I do have some limited experience, secondhand, with a port. Only recently, with Jocelyn. Had Jocelyn not discussed hers with me and showed it to me, I'd be clueless. As clueless as I imagine most people are, especially other children. It was scary for Jocelyn so I can only imagine what it's like for Evan!

So Evan likes Legos. Most little boys do. Sara says he mostly likes to make a Lego shop where the customers (she & her husband) can custom order their people. He gets the Lego magazine in the mail and follows the directions for their creations. He asks for Lego sets for all holidays and went to Lego land for the first time this past summer. Ethan likes them, but we're not "INTO" them like that. We have some Minifigures but only Harry Potter ones that came in the few sets I was able to purchase. I don't know much about them EXCEPT that you do build them like anything else with Lego. As in, you COULD put Hermoine's head on Harry's body if you want. So I'm thinking, it couldn't be that hard to make some "special needs" bodies. Like one with a port, if need be....The following is where Lego fits into Sara & Evan's story:

Now, to where the LEGO part comes in. He has always loved playing with them. He likes to create his own buildings/vehicles and play with them all the time. He most likes to create the Minifigures. It started as wanting certain types of people from sets that he wanted, but morphed into creating all kinds of people for him to play with and make as characters that he would literally sit for hours and create dialogue for.

A few months ago E was telling me that he was feeling down about having his port and wished that he didn't need it. I explained to him what we'd need to do in order for him not to have one anymore, but we're totally not at that point. That's going to take time. We were in Target at the time and he was looking at the LEGO sets. He wanted to get one of those packs that is just a little Minifigure. And when he took it out of the package to build it, he looked at the paper that had all of the different people offered in the series and he said that he wished there was a Minifigure with a port like he had. 

I told him that I wished there was one too, and that maybe he could write a letter to LEGO about his idea, because there are lots of kids that have ports to treat various disorders and illnesses, and they'd probably like to see a toy that is like them, too. So he wrote the letter to LEGO and we took some pictures for him to include and I mailed it off to the Lego company.

Evan's letter to Lego

Translation of letter if you can't read 6 yr old handwriting: Dear LEGO Builders:

My name is Evan and I am 6 years old. I have severe hemophilia A. I have a port in my chest and it helps me get factor. Factor helps keep me alive by it helps me clot.

I would like it if I could have a peach Minifigure of me. There are no Minifigures with ports. To make a port you get the same small circle from the belly of the droid. You put it on the right top of the Minifigure chest and attach a flat peach stud. And a hair piece.

It would be cool to have a LEGO me with a port because it makes me think of me.

Thank you,

Evan

PS - Here are pictures for you.

It was about a week after I mailed his letter that I got the response in my email. And he was just so disappointed. He talked about it for a few days. And when I finally asked what bothered him most, he said that he just really wanted there to be something that had a port like him so that he didn't feel so different. That he always sees toys that look like everyone else, but none that look like him and that it makes him feel even more different.


Ok, so Lego responded. And I will say this- It wasn't rude. It wasn't mean. But it is just NOT how a company should respond to a little boy in what I would consider extenuating circumstances. He wasn't asking for free toys. He wasn't asking to be CEO of their company. He wasn't even really complaining. He wasn't SUING. In this litigious society, he wasn't threatening some kind of lawsuit and that is a positive! All the kid wants is a figure with what he considers a disability or something that makes him look different.

I've asked around- there are websites of people who take Lego pieces and make their own kind of figures. Apparently Evan knew how to make a port on a figure. Clearly if a six year old could give directions for how to make one, it wouldn't even be difficult to port one. Certainly easier and more pleasant than a small human child enduring the procedure of a real one. But from this letter, "Moira" didn't even know what a port is, she could've been talking about a prosthesis, or a bandaid. He's SIX. At the bottom of the email- they couldn't even send a snail mail letter on Lego letterhead or something, it asked him to complete an online survey to help them better assist their customers. Well, I'd bet good money, there are no specific questions about ports and Minifigures on that survey and I don't know many first graders able to complete online customer service surveys. Not to mention, I don't think they'd want the feedback after sending a form letter kind of email to a heartfelt plea of a child.

Lego's response:

Dear Evan, 

Thanks for getting in touch with us. We always enjoy hearing from enthusiastic fans and are so glad LEGO® products bring you joy

It's great to hear what you like. You sound like a very brave little boy and I bet your parents are very proud of you. There was a lot of thought put into the design of a special figure with a port just like you.  I am sorry but we are unable to make custom mini figures.We'll pass your comments on to our talented team of designers who will be thrilled to hear from such a huge LEGO fan.

It’s wonderful to know that you've had so much fun creating with LEGO bricks. As a LEGO builder, I'm sure you know that our huge selection of building and model sets offers unlimited possibilities. You can create almost anything your imagination dreams up!

Thanks again for getting in touch.  We're always pleased to receive feedback from LEGO fans!  If you could take a moment to complete a four question survey by going to the link below, it will help us make sure we are providing the best customer service to you.

LEGO Survey link
Please let us know if you need anything else.

Happy building!
 

Moira

LEGO Service

 

Basically Moira said he can build whatever he wants...the possibilities are endless, EXCEPT for your Minifigure with a port. Thanks Moira.

 

Look, Sara and I both understand that they can't just make Minifigures with every kind of physical affliction. And if they do one, they open themselves up to everyone having an issue, etc. But this is a KID company. THEY MAKE TOYS. SO what better an idea to really drive home that they care, than to take a kid's request a little more seriously in a matter like this. He didn't ask for hair pieces that are mohawks, or earrings, or some other superficial "look" to be rolled out. It's a PORT. It's something I'd have to assume most kids with them DON'T WANT. Hell, if it was chicken pox or measles Minifigure, we could just draw some red spots on them and call it a day. But those illnesses also end. Needing a port may not? I don't know. But Evan has been living with one long enough that he's bothered by it. So, as a company, I'd be like- Wow. Great idea. Wonder how we could do this. Even from just a good-feeling marketing standpoint, it's genius.

 

Evan is a huge Lego fan, spending a lot of time and money on their products. I just don't see how they don't spend a few extra minutes, either thinking about how they can do this, or at least sending a handwritten letter explaining why they can't do this particular Minifigure. It also wasn't like he was asking just for himself. He was asking for all kids with ports to have a Minifigure representative. I think that was pretty brilliant and caring of a six year old to think about what would make him happier about having to deal with a port and thinking it would make other kids feel better as well.

I'd also have to assume that no one on their "talented team of designers" has a port either. So Evan could've been their little port ambassador, helping them come up with the best way to keep it real. Lego- you missed the boat here. I kind of want to buy some Minifigures and other Lego parts for Ethan to try ourselves to make a ported Minifigure just in solidarity.

Evan wearing a Minifigure shirt of his own creation