Jake and Sirolimus

Update on Jakers

I wanted to write a post to first of all, update everyone. When we see family and friends who have followed his story from the start, they always are so thoughtful to ask, "Hows Jake?" So many people ask, because not much has happened, and for Jake that is a wonderful thing. I also wanted to post an update because so many other KT kids and families are about to take the leap with a new medication they have found to help our KT kids, Sirolumis (aka Rapamune). We have had such a positive experience with it and so many concerned parents post on the KT pages asking for any advice. Here is our experience.

In the fall of 2013, Jake spent his longest time in the hospital. We had just attended the Vascular Birthmarks Foundation Conference in Irvine and had a wealth of information. We left with so much promise and hope. Just a few days later, we landed in the hospital, yet again, with another infection. This time, it was serious and we couldn't get the pain under control. I turned into a mama on a mission. I gave his doctors down at Rady Children's San Diego a list of names with the doctors we had just met with. I wanted a change. I couldn't continue to bring my 3 year old in to the hospital every 2-3 months to be hooked up to IVs, pumped with medication, poked tons of times, scared and miserable. I wanted to take him to San Francisco for treatment, I wanted to take him to New York. I was not leaving with him until we had a plan. I felt like this was what our life was going to be if I didn't speak up. We stayed at Rady for 2 weeks and after many doctor conferences, phone calls, visits and too many IV pokes to count, went home with a plan. They started Jake on Sirolimus. This medication is typically used for patients with kidney transplants. Somehow, it has worked for kids with KT as well. The hope was that it was slow the growth of the lymphatic portion of the malformation, which is what made his bottom and right leg so swollen and large.

After starting on it, we got to know an entirely new Jake. Jake had been the kid that threw major tantrums, scream and cry constantly, wake up and cry in the middle of the night, it had been rough from day one.  We never knew when we would head into the hospital. Each day was unknown. He couldn't tell us when he was in pain. Jake also peed blood every time he used the bathroom, which is why he was 3 1/2 and in diapers still. He sometimes screamed and shook when he peed because it hurt so bad. I'll never forget him standing in his pull-up shaking and crying as he tried to urinate. It was unbelievably heartbreaking. This was all due to the malformation in his private area. I had to learn his leg and the changes it made, warm red sports and fever mean infection, hard nickel size knots were clots, bruising was usually pooled blood which then got an infection in it. Once he began the Sirolimus, the tantrums lessoned, the blood in the urine stopped and he was funny and happy. I know his pain lessened once the medication kicked in. I think he grew and the lymphatic portion didn't grow as much, which meant less pressure on the inside of his abdomen and leg. We did weekly blood draws until his levels were where the Drs wanted them, typically between a 6 and an 11.  We now do monthly blood draws. We also did MRIs every 3 months to check the growth of this leg. The size and swelling of his leg lessoned dramatically. He's grown taller without the leg growing larger. Granted, his leg is still greatly larger than the other.

Since November 2013, we have been hospital free. Going from every 2-3 months in the hospital since birth to not having to carry the worry of another hospital trip has been unbelievable, although that fear is never far from my mind. Just last night Jake spiked a fever and Travis and I went in to panic mode. Trying to figure out how we'd get Bryce to and from school, what we would do with Trenton, how would we manage as a family all being apart? Scared us. Thankfully he woke up just fine. We do know that a hospital trip is imminent. As this is a chronic illness that will follow Jake for his entire life.

There have been a few downsides from Sirolimus, but no where near enough that it's not worth it. Sirolimus does lower a childs immune system dramatically. In the beginning, I was very careful about where we went and what we did. You cannot live that way tho. By last summer, we were spending our days at the trampoline park, the zoo, the beach and camping. We were out and busy and Jake had no complaints. I think by November, 1 year since starting the medication, things were so good that I became lax on hand sanitizer and keeping him germ free while we were out and about, although its not all avoidable. He's had the chicken pox, tons of colds, stomach flu and pink eye. We have Jake on Bacterium on the weekends to keep his immune system up, but it can't all be avoided.

Overall Sirolimus has been a blessing to us. Dr. Geddis at Rady Children's Hospital said out of the 11 patients she has on this medication, Jake has had the best reaction. She said she wished all of her kids had his reaction to it. We are so grateful for that. Come October this year, we will start to wean him off. The longterm side effects of the medication are unknown. To say I am nervous about taking him off slowly is an understatement. Jake starts kindergarten in the fall and although he will have a health plan in place, I'd hate for him to be in and out of school due to pain, bleeding or hospital trips. The future is unknown but we are grateful for now.

Please message me if you are a parents who's child will be starting the medication soon and if you have any questions. Ill answer them to be best of my ability.
((Jake takes 1mL 2x a day with a little cup of OJ)

You may think I'm crazy...

Last weekend, we drove 2 1/2 hours north to pick up the newest addition to our family. Welcome home Kona the Golden. This bundle of fur, also known as a Golden Retriever, has joined our tribe, as my husband put it. When we told our family and friends of our newest addition, the response from most people was, "What are you thinking?" I laugh it off because, don't get me wrong, this same question has crossed my mind more than once. What am I thinking??? 3 little boys, a 9 year old dog, a cat that brings live birds in our house, 2 chickens, a fish that does swim, a new puppy and a partridge in a pear tree. Sounds about right. This is my life and I love it.

My life has become something I never imagined. Pure chaos. Its messy, its unorganized and its crazy. I look around my home and its messy. Its not dirty, its just lived in. Basket overflowing with shoes by the front door, mail and paperwork piled up on the desk, wet shoe prints on the kitchen floor. Its lived in. There is a "me" before 2011 and a "me" after 2011.

Since Steven passed, there is a new me. Sometimes I wish Steven would have known the me now. Before he passed, I was uptight, easily annoyed, wanted things done a certain way, my way. I wanted to feel in control of my life. I had an idea of how I wanted things to be and when they weren't that way, I was annoyed. I cared too much about what other people thought, even though I would have never admitted that. The me since 2011, doesn't really care what other people think. I enjoy my little world with my little chaotic family and I like it that way. I don't need a ton of friends, I have those friends who have stuck by me, and I don't need to show off what I have and can do. I just don't care. I care about those in my home, my little family. I care about my close family and friends. The rest of the entire world, I just don't care. Sometimes I worry that maybe I just don't care enough what you think.

Don't get me wrong, I am not narcissistic. I care about the planet and do my part to recycle, be friendly and helpful to others. But I don't care what you may think about what I do in my life. So, we have a puppy. Am I taking on too much? Its nothing I cant handle. Believe me. I don't care if he pees on the floor, I'll clean it up. I don't care if he chews up my favorite shoes, I can get another pair. After Steven died, I had a choice. I could curl up and die along with him, or I could do what he'd want me to do. I could do what he no longer couldn't. I could live. I chose to LIVE. Living is what I am doing. Some days I go through the day without accomplishing much. But I am living. I am attempting to take in each and every moment with  my kids while they are little. Even when they are throwing tantrums and I'm really do throw in the towel.

I will Live. Taking on more is nothing I can't handle. Live it, love it and enjoy it while you can. 

MIA

Where have I been? I have been asked this several times over the last few months. Why haven't I written anything? I'm always surprised when I am asked this. I am caught off guard in the realization that people actually read my blog. The idea that I give others the ability to think and learn and live outside of the box of their normal every day lives for just a minute is weird. I am humbled, but again, its a weird reality. I guess when I sit here and stare at the computer screen, I feel like it is just me and the computer. I forget the mass amount of people that are out there, who take time out of their busy lives to read my little bit of feelings and experiences.

So, to answer the question. At the beginning of 2014, I actually made a New Years Resolution. I wanted to blog. I was going to blog. I wanted to write often. It was a release for myself. It gave me moment to be in my head and get the chaos that ensues in ones brain out into the vast world of the internet. Blogging for me is like a weight lifted. So, I guess since I failed at blogging, I have been carrying a weight. I could say that I haven't blogged because I have 3 kids! I HAVE 3 KIDS! Yikes! Talk about a whirlwind! I have life, and laundry, piling up all around me and feeling a tad overwhelmed is an understatement. But, my 3 kids are not my excuse. I'm not quite sure how to explain my absence, because I don't want it to come off wrong. I don't want feelings to be hurt. Which apparently is what my blog had been doing. So I stopped. Enough said.

When I began blogging after Steven passed in 2011 (cannot believe it was that long ago), I blogged because I needed an outlet. I needed to vent and I needed to be heard. The person that used to lay in bed next to me at night and listen to me vent was gone. I was very alone. When I lost Steven, I can remember a night that I sat on my parents computer and searched out anything to make me feel like I was not alone. "Dead husband, motorcycle accident, single mom, widow. Widow." That was a word that took me too long to except. (Thats for another blog, because I think there will be more). Widow, widow widow widow. I was a widow. What I found in my midnight google searches, I was not alone. I was not the only widow in the world. There were other widows! There were other young widows! There were other young widows, in their 20's with little kids! There were other young widows, in their 20's with little kids that had just had their entire lives shattered. I was not alone. I read blogs. I read and I read and I read. I needed hope. I needed someone to tell me I would survive because I felt like I wanted to die right along with him. No matter how many times my mom told me I'd be okay, I needed to hear it from someone who knew it. Someone who had survived it.  I found blog after blog from widows. Young and old. Trying to piece back together their shattered life. They were surviving. Some barely, but they were out there and they were putting one foot in front of the other and choosing to live. Maybe if they could, I could too. I started blogging.

To be honest, my intention for my blog writing was not for YOU to read it. My intention was to share my story, my loss, my grief and my pain with others who understood it. With others who needed to know that they were not alone. What I was surprised to find was that they were not the only ones reading it. My friends, my family and others who had heard my story were reading it too. My intention of this blog is not to hurt feelings, although feelings have been hurt and I apologize if that was the case.

I have found, and been told, that I am stubborn. Shocking I know. I can be a hard egg to crack. I don't want your help and I want to do it myself. I don't open up to just anyone. I don't make my struggle someone else weight to bare. It is mine. I deal with it alone. Its just how I am. Blogging has broken down that barrier a little and given others an insight into a life that they could not imagine. It has given others an understanding of loss and grief. My blog is for me. It is for me and it is for others who need hope. I write what I feel at that moment and I get it off my back. If it is too much for you to read, then don't.

I hope to get back on the blogging bus. Until then, this is my explanation. No longer MIA.

I have no title for this blog

A distraction. Today I need a distraction. I typically spend the last few days and today living what I lived 3 years ago. My mind takes me to places I wish never occurred and I'm consumed with dread. I feel a black shadow is placed over me and I carry the weight of death, loss and grief. This year is a little different. I am distracted with Jake and his medical needs. Of all days, his MRI was scheduled for today. I contemplated rescheduling it. But I knew it needed to be done and just getting it scheduled is a pain. I also knew it needed to be done before the next addition arrives. There, the second distraction. I've been contracting and in lots of pain. Thinking Trenton may arrive early, hoping it would  not be today. Distractions. Can be a blessing and a curse. All of a sudden June 5th is here. I'll be honest, I've avoided Facebook for the past several months. Deleted the app off my phone. It was doing more harm than good for me. I truly want to delete it altogether, but there is this string that keeps me attached. Knowing I have that access to my widowed community, Jakes KT community and photography. Knowing people can contact me directly if needed and makes me easier to find. I've used Facebook to share our story and open others eyes. I'll keep it. When I think about it, as much as Facebook can feel like a bad thing, it has been a blessing too. Will power is all I needed.  I have used incredible will power not to go on it tho unless need be. I have found that I have not missed it one bit.

So I'm sitting at Rady Children's  Hospital. Not the place I want to be spending today. If I had a choice, I'd be at the beach with my boys,  pizza for dinner, living. Living is what Steven would have wanted for us.  Instead, we are here. Travis and I had to hold Jake down while a mask was placed over his little face and he slumped into a deep sleep. I walk away from him with panic and fear, praying it all goes smoothly and I can hold him and take him home this afternoon, with the thought lingering in the back of my mind that things don't always go the way you want. All of a sudden, the deep dread, grief and cloak of sorrow are draped over me. The "what ifs " consume my mind. So I sit here and Travis asks me if I've looked at Facebook. No I say, why let one sad thing replace another because I can only imagine the posts I'll find about Steven and be reminded of what today really is. He says I should look. He says it's a good thing. So he leaves to get lunch and I log on to the Internet Facebook. Knowing I will see things about Steven, I find myself smiling. Laughing at a video Amanda posted of Steven using a hula hoop, the picture of Bryce and Steven making the same face, a picture of Steven kissing my brother bald head, memories that bring back such joy.  Thank you to everyone who is sharing Stevens life today. For today, I am grateful for Facebook. Today I am reminded of all of the people who loved Steven so much, who will share him with his boys and who will continue to love and live and carry on his memory.

I often avoid feeling the loss of Steven.  June 5th is not something I can avoid. I wished last night I could go to sleep and wake up Friday morning. Didn't happen. The pain is deeper than I've ever thought pain could be. I skim the surface of that pain daily. In the small reminders of what he is missing, in the reminders of what the boys are missing and in the reminders of what I miss about having him around. The surface pain is enough to remind me he's gone and enough to hurt. Feeling the entire pain is a place I cannot go.  I'm sure those that feel the loss of Steven or any loved one understand.

So I sit here, waiting for Jake to come out of his MRI, waiting to kiss his face and take him home.  Thank you to everyone who has loved, supported and continues to share Stevens life.

Best Mother's Day gift ever

Happy 6th Birthday to Bryce! I can't believe that 6 years ago today, on Mother's Day, I was made a Mommy.  He was the best Mother's Day gift ever. I was honored today to share this day with him, and like most moms would be, totally okay with making the day all about him. And we did!

We have a 6 year old. Its hard to believe Stevens almost been gone as long as Bryce had him in his life.  Steven would be so proud of him and also so incredibly challenged. He would probably be calling his mother apologizing for being such an ornery kid and giving her such a hard time though out most of his childhood. When Bryce threw the boulder-size rocks over the fence into the neighbors pool a few weeks ago while watching to see if anyone was around, I can't help but think this is his Dads mischievous nature. Bryce loves reading, baseball, legos and has enough energy to keep everyone in this house on their toes. He apparently knows everything, hmmm…sounds like someone else we know and never stops talking unless he has his headphones on rocking out to Kings of Leon, Gaslight Anthem or Bad Religion. (I know, not the best choice for a 6 year old but he rocks). I am grateful to still have so much of Steven left in my life with this ball of energy.

Each year these birthdays, holidays and milestones bring on a new realization for me. This year, I realized that Steven would not ever get the chance to share his experience of becoming a Dad to this kid. I can remember that day well, even after 28+ hours of labor. I remember when Bryce came into this world and the doctor said it was a boy. I remember saying, "I knew it!" and I remember seeing him and crying and the doctor telling me not to cry because it was making me move too much. After that moment, I passed out.  I was exhausted to say the least. After that were moments only shared between Steven and Bryce. Steven got to go off with him and hold him first. Steven walked out to tell all our waiting family, "It was a boy" (something we do have on video). But how he felt, those moments, are something he will never get to share with Bryce, and for that reason, I feel so sad and feel Bryce was so robbed. Of course I could tell him exactly how his Dad felt, but that will never compare to the way Steven would tell it.

Steven is not here to experience these milestones with Bryce. He will soon miss Jakes 4th Birthday. The realization in that is he has now missed 3 of Jakes birthdays. He was only here for one. One. Each year will be another moment gone, missed and a new realization of what he is missing. As heartbreaking as it is, we keep moving forward. We keep moving on. This was a choice I made from day one. Something I read on a widow blog right after Steven passed was a mother who said, "My kids already lost their dad, they couldn't lose their mom too." I have always kept this in my head. Although some days I am so ready to throw in the towel, like most moms I'm sure, I made the decision to keep moving forward.

What I do know for sure, we are beyond blessed to have Travis share these new milestones, birthdays and occasions with us. Travis has not just stepped in as the man figure in their lives. He has jumped, feet first, into helping me raise two boys that will be outstanding men some day. He has committed himself and his entire life to them without ever thinking twice. Its surreal that he is here and has never looked back. There were several moments today where I stopped and looked around. I watched Travis hug his boys, jump all over the trampoline park with them, chase them at the beach and drive us home safe at the end of a long day. He carried each sleeping boy upstairs and put them into their beds. I was grateful that I wasn't alone in this and beyond grateful that he loves those boys as if they were his own. As if he were there the day they were born.

A picture is worth 1,000 words

This is one of the first pictures I can remember taking after Steven died. July 2011. The boys and I had gone to Seattle to stay with Stevens mom and dad for a few weeks. Just to get away I guess. I honestly don't remember much from this trip. I vaguely remember watching the boys play in the grass. Jake was crawling still. He also took his first steps on this trip. Steven missed Jakes first steps. Thats hard to let sink in. I also remember the plane flight home. Both boys were crying, I was alone and knew I looked like a crappy single mom when all I wanted to do was tell everyone that my husband had just died so please don't judge me. No one knew. Not one person on the plane knew that my life had just been turned upside down. No one knew I was walking in and living in a fog. The thickest fog I had ever experienced. Makes you wonder what the person next to you is going though. Makes you feel bad for judging that lady in the store or the homeless guy on the street. You really don't know their story.

This picture tells so much. When I come across this picture, I literally feel like I fall into it. I fall into that stage of grief. I get it. That girl in the picture is just surviving. She is breathing and moving and being a mom because her body just does that. I remember feeling like I wasn't living. It wasn't possible. I smiled because that what you do. The pain behind those eyes is so deep and so unimaginable. So lost. Those first few months after Steven died were such a fog. I felt like a zombie.

Being in pictures would get easier as time moved forward. I needed to be in pictures because I needed to keep living. I needed to keep breathing. I needed to feel human and alive. Just that little piece of me.

Today, pictures are a huge part of our lives. With a husband who is passionate about photography, pictures are in so many aspects of our lives. Pictures tell so many stories. Looking back on all of our pictures, they begin to tell a story of a family, a Dad, a widow, a survivor, love again, and so much more. I remember being so glad I had so many pictures of Steven and the boys. When you think you don't want to be in a pictures because you are too big or too old or your hair doesn't look right, remember that the pictures will tell a story of that moment in time that you can never get back.

Here are just a few pictures that tell our story. All of these pictures are worth 1,000 words…

Bryce with his Dad Steven. Jake was in the hospital at Loma Linda. May 2010

Jake with his Dad Steven in Maui. April 2011. A trip I am beyond grateful for.

June 5, 2011

Our new life

Bryce age 3 and Jake age 1. We stayed at my parents a lot in 2011.

Camp Widow 2011

Jakes 1st hospital admittance after Steven passed. 

Lighting a candle for Steven as a victim of crime

Stevens Birthday we spent camping with family.

Fall 2011

Christmas 2011

On Bryces 3rd birthday, Steven was given the chance to travel for work across country and take a class.
I encouraged him to go, Bryce would have plenty more birthdays.
Never knowing that would be the last Steven would be around to see. 

Summer 2012

Blessed by this guy

Bryces 1st Sport. Soccer. Travis as the coach.

We become a family.
Married Travis July 2013

Summer 2013

Hospital trip October 2013

Late nights….

I can't seem to sleep tonight. At 25 weeks pregnant, its become a little harder to get comfortable at night. I hate saying that so early in my pregnancy, I know I have a long ways to go, but its true. So, I'm up and flipping around pages on the internet and started reading my old widowed blog. I have never gone back and read old posts, for obvious reasons. The fear of taking my mind right back to those awfully painful places. Which is what I did. As I read, I found I was so sad for that girl. I was so heartbroken for the me. The girl with the two babies attempting to make sense of a situation that made no sense. That girl that was hurting beyond belief and insanely lost.

Since losing Steven, I have had many friends send new widows in my direction. I am grateful they feel they can do that. I remember after Steven died, I spoke with a friend/family member who was widowed as well. It was the most comforting feeling to talk to someone who said, "I get it and you will be ok, because I am ok. It just takes time." There is something different in those words when it comes from someone who gets it, rather than your mom or friend who knows I will be okay one day, but still doesn't get it.
When I hear these new widows stories, my heart breaks for them. I know the journey they are about to embark on. I know the nights they will drink a glass of wine or take a sleeping pill just to go to bed without laying there waiting for their husband to come home. I know the letters they will get in the mail addressed to their husbands years down the road and the phone calls they will get asking for their husband by name, only having to say they died. I know the looks they are going to get when their kids are throwing a tantrum in the grocery store and you are about to break down too and you feel like all the eyes on you are because you look like a dumb single mom who got knocked up by some loser father who left, when thats not the case at all. (Don't judge people too harshly. You have no idea what their struggles are). I just know. I am glad that my name can be given to them so they know they are not alone. Whether they contact me or not, I just want them to know they are not alone.

Sometimes I don't feel qualified to be a widow anymore. I am remarried, I am happier than I ever thought possible, I am having a new baby. This is not something widows do. But I am, I am still a widow. Right before Travis and I were married last year, it suddenly came to mind that I wouldn't be a widow any more. I wouldn't have to mark the "widowed" box on paperwork. I could fill in Travis' name on the boys paperwork under father, which was something that took time to get used to. I felt like when I did that, it was just washing away Steven. I felt like I would dishonor him by not giving him some sort of acknowledgement to the boys name. Filling out paperwork also made me want the other person to know that the boys had a great dad but he died and thats tragic and he wasn't a deadbeat who left. Travis' response to my quizzical thought was that I was still a widow and will always be a widow. I am just a remarried widow. I was sad and relieved all at the same time.

As I read back through my old blog posts tonight, I felt the urge to rush upstairs and cuddle my boys. I am so grateful Steven left me these two vibrant and exciting kids. (I say that in the most sincere way possible. LOL.) They are fun and full of energy and although most days I spend yelling at them, I am so so so glad I have them. In the year after losing Steven, they were my huggers, my criers, my cuddles in bed and the reason I got up each morning. I also remember being glad that I had a 3 year old that could hold an adult conversation. Who could communicate all his needs and was insanely helpful. Bryce is and was an awesome kid. I don't know how I would have ever made it through those first few months without them. I am glad I had the ability to blog about it. Those 3 months after losing Steven are such a blur. I lived in such a fog. Reliving that fog is painful, but it is also so real.

Off to kiss my sleeping boys, and my sleeping husband. Whom I am beyond grateful for. He's for a later blog….which Im sure he would appreciate. xoxo