Monday, June 20, 2016

New Adventures

Holy smokes have we been busy!

Recently, Isaiah and I sat down and looked over finances. UGH. When you have a mailbox full of medical bills each day, that is quite the depressing task. We discovered that even though we had put most of the bills on payment plans, (because let's face it... who on earth can pay those outright every time) we just have too much money going out every month and not enough money coming in. Without medical bills, we are totally fine, but with... not so good. While trying to figure out what we were going to do about it, I was invited to an online LuLaRoe pop up. Initially I didn't think much of it, but because a good friend of mine invited me, I thought I'd see what it was all about.

It's actually pretty darn cool. LuLaRoe is a clothing company started by an amazing husband and wife team (a lot of their family actually work for the company as well). They specialize in incredibly comfortable but super cute clothing for women (XXS-3XL) as well as kids and even men's clothes. I will admit, I was skeptical at first but the more that I learned about the company... the more that I loved it. They have their own team who create all of their prints and then each print is only used on 2,500-3,000 (ish) items (they have SOOOO many styles) and then that print is discontinued. Essentially each print is limited edition and that means that they have new prints coming out constantly. I did all sorts of research on the company and their clothes... and then I tried the clothes. Oh my goodness. I was hooked. After MUCH discussion and Isaiah urging me to give it a try, I submitted my paperwork to become an Independent Fashion Consultant.

I will still continue working at my full-time job during the week but on my lunch breaks, nights, weekends, and holidays I will be selling LuLaRoe. I know that it isn't going to be easy, but feeling useful and providing for my family makes it so worth. Then you add the fact that I have always loved working in retail AND I love love love the clothes and the company. It is really a no brainer. I'd be silly not to try.

After submitting my paperwork, I waited a very long 11 weeks until I got my official call to place my initial order, and then 2 subsequent orders for a grand total of 504 items. Less than a week later, the boxes started to arrive. The past few months have been absolute craziness with preparing space in my house to store all of my inventory and actually processing those initial shipments but I just keep in mind my ultimate goal, paying off those pesky medical bills! So far I've sold a few items to my mom and a few to the ladies that I work with but this coming weekend I'm having my very first open house (YIKES!) and then I'll follow it up with my first online sale. I'm super excited and super terrified. Obviously there is always self doubt when you are doing something that is so huge. This new business is an investment in our future though. We are investing time, money, sleep, etc but I just know that with a lot of hard work, this is going to pay off.

So if you are in the market for some new clothes or just want to check out what this company is all about, I'd love to have you join my Facebook group or like my business page. This is a new adventure for my family and I would love to help you find some clothes that make you look and feel amazing.

Okay, now my lunch break is over... back to my other job :)

Facebook business page: https://www.facebook.com/LuLaRoeShelbyVreeman/
Facebook VIP Shopping Group: https://www.facebook.com/groups/LuLaRoeShelbyVreemanVIP/
Email: LuLaRoeShelbyVreeman@gmail.com

Sunday, May 1, 2016

Results

It was around this time 2 years ago that Isaiah and I flew to Seattle and first met with Seattle Cancer Care Alliance. It was around this time 2 years ago that we learned that Isaiah had cancer and that I was pregnant (for the 5th time) with Audrey. This time last year, Isaiah, Audrey, and I were living in a small apartment in Seattle waiting for them to let us go home after all that followed Isaiah's heart failure. What a crazy few years it has been.

This year, things look so much better. We have an amazing 15 month old who keeps us VERY busy. Isaiah finally heard back from the doctors that is is NOT cancer. We aren't sure exactly what "it" is that they saw and biopsied, but we are very happy that it is not cancer this time. Unfortunately during Isaiah's week in the hospital (thank you blood thinners and LVAD for keeping him in the hospital for a week for something that should be MAYBE an overnight stay), not only did the poor guy have to sit in the hospital forever, but once he was ready to actually leave, discharge paperwork signed, bags packed, everything... they came in and told him he'd probably be there for another day. Apparently they did a culture of what was biopsied and they found that he had an infection. Again. An infection that only responds to IV antibiotics. Again. The poor guy has already done 2 weeks and then a separate 12 weeks of IV antibiotics for a different infection during the end of last year and the beginning of this year. Now, he would need IV antibiotics yet again. Which means another PICC line (and believe me when I say, those things are a PAIN in the butt).

Thankfully, we were able to convince them to get the PICC line put in ASAP, give him his first 2 doses of meds, and let him go! It may have been midnight before he was able to leave, but he still got out of there that night. Which worked out well too since he was able to get on a flight early that morning.

While IV antibiotics seriously suck, we are so glad that this doesn't require him to stay in the hospital. We are so glad that he was able to come home. We are so glad that we were able to spend a few hours yesterday, going from park to park with some family to let the little ones play. Isaiah even got on the swings for a bit. It was a lot of fun.

We are trying to not let any of this medical stuff or every day stresses get in the way of living our lives. We want to still take time for date nights and family days. We can't let this stuff run our lives. We can't waste however many days we are lucky enough to have together, thinking about how things should have gone. Yes, SHOULD. Because no one should be diagnosed with cancer, and certainly not at such a young age. No one should go into heart failure ever, let alone in their 30s after battling cancer. No one should have to have SO much bad happen in such a short period of time. But it happens. Every day people deal with stuff, some much worse than what we've encountered. It sucks.

But you can't let it consume you.

You can't allow the circumstances in your life to take over. You have to live your life. You have to have fun. Go on that vacation. Have that date night. Enjoy every moment that you get. Each day is a precious gift. I am so thankful for each day with Isaiah and Audrey. I am so lucky for our family. Speaking of which... it's time to go spend the rest of the day with them.

Thank you for all of the prayers these past few weeks.

Oh, and here is a picture of Audrey yesterday. She's such a happy kid.

Thursday, April 14, 2016

Waiting...

Back in February, Isaiah went back to Seattle for follow up scans to make sure that he is still cancer free. Unfortunately, the scans were inconclusive. The radiologist thought that he saw something but with all of the hardware in there, it is so hard to see very clearly. They decided to just wait a few months and scan again.

A few weeks ago we got a call letting us know that he'd been added to the surgery schedule for the same week as his follow up scans. Surgery? Uhh... why? Well, we finally got everything mostly sorted out. He insisted that I stay home with Audrey, so I did. He was set to fly out this past Monday. Sunday night, Audrey kept me up all night (she got sick and is getting 4 molars in all at one time) so I ended up staying home Monday. Shortly before we were going to head in to the airport, we got a call that his dad had had a stroke and was on the way to the hospital. We packed up and went to the hospital for a little bit before it was time for Isaiah to get to the airport.

After Isaiah's flight took off, I was on the phone with my mom and a HUGE gust of wind hit our house out of nowhere and ripped a bunch of shingles off our roof. They flew everywhere. We had plastic just flapping in the wind up there. Thankfully, my dad recommend a local roofer who was at my house in about 15 minutes. Sure enough, we could patch it but with just a little more wind, we'd end up patching it again, and again, and again. We knew we'd need to get a new roof soon, but this was not WHEN were expecting it.

Monday was a weird day.

Tuesday, Isaiah had his scans but we didn't hear what was on them until yesterday. Yesterday afternoon, Isaiah talked to the surgical team. The CT scan didn't really show much of anything (same type of scan that they did back in February). However, the PET scan showed that there is definitely something there. The basic concept of the PET scan, if I understand it correctly, is that they inject you with sugar, some of which is radioactive sugar. The radioactive sugar will collect in an area where there is a mass. They then scan a few more times at specific intervals in order to see how the area is taking up the sugar. If it is taking up only small amounts, it is likely non cancerous, that is normal. If it is taking up a lot of sugar it can mean cancer. Through some research, I found that this can also happen, even when cancer is not present, when the area is inflamed or infected.

His PET scan revealed that something is definitely there and it was taking up a lot of sugar. Definitely not the results that we had hoped for but the only way that we will KNOW what it is, is a biopsy. Very early this morning, Isaiah was taken into surgery. He's been in there for almost 4 hours so far. Waiting is not fun. Oh, and we are getting a new roof put on our house today as well haha. I guess we like to do everything at one time.

So for now, I am waiting... Waiting is hard. I knew that I would be useless at work so I stayed home with Audrey. I am waiting, and praying, and trying not to obsess. Obviously that's working well since I'm here writing it all out.

Prayers would be greatly appreciated!!!

Saturday, March 19, 2016

Part 3

Wow... I've been a BAD blogger :/ I have been so caught up with everything that I just haven't had a chance to sit down and write things out. I think part of it has been due to being busy and the other part is that I have SO much I want to say and it is overwhelming. If I started typing now, I think I'd have to be on my computer for a good week straight to get it all written down... probably even longer.  Then you add in the emotions that come back whenever I start reliving it... ya, it's a lot.

Anyway, where did I leave off after the last update? I believe with Isaiah waking up at the beginning of February and finding out what all he had been through over the previous week. I ended my last update replaying how he had finally been able to hold Audrey after waking up. Before Audrey was even born, we knew that he was sick. We had been told pneumonia but after she was born, the docs were so unsure of what was going on with him that Isaiah was worried he was contagious so he really only held her a few times before everything happened. Watching him hold her and in spite of everything that his body had gone through and was still going through, he looked so much better. So much healthier. He looked so happy. Heck, just thinking about it gets me all teary eyed.

After a few days with the second temporary heart pump, the doctors informed us that unfortunately his heart had not continued to heal as they had hoped. They believed that an LVAD would be the likely next step. Just to double check, they gave him a few extra days to heal and then ran some tests. While closely monitoring all of his vitals and his heart, they turned down the temporary heart pump to see if his heart continued to function properly or if it was clear that he still needed that support. It was pretty clear to them that he still needed the help. His next heart surgery was scheduled. He would be getting the LVAD.

I can't remember if I've explained what that really is and if so to what extent I explained it so here is a brief rundown. You can always google it too. It's pretty incredible. A LVAD is a Left Ventricular Assisted Device. Essentially this pump sits underneath his heart to do the work of the left side of his heart. He has no pulse. Isn't that bizarre?! I believe I've read that the newer versions have a simulated pulse of sorts but the version that he has is just a continuous flow... so no heartbeat. Although, we've discovered in recent months that if his blood pressure is higher than it should be, his heartbeat is definitely identifiable. The pump that sits under his heart is attached to a long cable that comes out around the right side of his belly. The cord is called a driveline. The driveline site is constantly covered by a see-through bandage that we change weekly and use to watch for any sort of infection or blood. (LVAD means he is also on A LOT of blood thinners so he bleeds super easily.) The driveline connects to his "controller". Yep, controller. Sounds like parts of a video game system to me. The controller is the brains of the operation. It displays various numbers regarding the pump and is also what will alarm if the pump is having issues. The controller is then connected by two cords to either batteries or his power module (plugs into the wall). He has to be connected to either the batteries (2 of them) or the power module at ALL times. It is was keeps the pump, and inevitably his heart, functioning.

There are A LOT of things that go along with a LVAD. He can't be submerged in water, he has quite a few steps that he has to do in order to take a shower. He has to be on a lot of blood thinners. He takes a lot of medication. He can't have CPR. He has to be very careful about infections. He has to make sure he drinks enough water, eats regularly (and hopefully healthy). He has a TON of equipment that he actually has to have with him at all times. He has to have a back up controller and back up batteries with him always. You just never know. I also bought him a raincoat to keep with his backup equipment since a heavy downpour could end up being fatal for him. How crazy is that?!

The LVAD has changed our lives in many ways and sometimes I can tell that it really gets to Isaiah. But what I try to always remind him of is that the LVAD is the whole reason that he is alive today. He has been able to watch our daughter grow over the last year. He wouldn't have had that otherwise. He would have only had a little over a week with her. During which time he was soo sick. I would have been a 24 year old widow. That's terrifying. He has been through SO much in the last few years and I just couldn't stand thinking that that could possibly be the end for him. It didn't make sense to me. I didn't want it to make sense either.

Isaiah underwent open heart surgery about a week after he woke up from sedation after his 2nd heart surgery. By this point, I believe this was the 7th time that I'd sat in a waiting room while he went into an OR. 4 with his cancer stuff and then this was the 3rd heart surgery. 7! In under a year. He did well, and was back in the Cardiac ICU in a matter of hours and was awake with the breathing tube out the following morning.

Because it was open heart surgery and his chest had to be cracked open, he was put on a weight restriction. For the next 6 weeks, he was not allowed to lift, carry, push, pull anything 10lbs or more. By this time, Audrey was JUST on the edge of being too heavy so I would just get him all set up with pillows and place her in his arms so that he could still hold her. He was also not allowed to reach his arms up over his head or too far behind himself. This was especially difficult since he had only been able to move around at all by using his arms since he was still unable to use his right leg. Then you add in the fact that he'd been in a hospital bed for a couple of weeks and muscles were weakening like crazy. We knew it was going to be a tough 6 weeks until those restrictions were lifted but Isaiah was determined to get as strong as he could, as soon as he could.

A few days after surgery while Isaiah was still in the ICU, my mom, Audrey, and I flew back to Alaska, leaving Isaiah in Seattle. Thankfully some of his family flew back to Seattle to be with him while I was gone. Obviously he was being very well cared for at UWMC but it just felt wrong to leave him there without friends or family to help the time go by.

Since we had left in such a rush, I'd left the house in total destruction but when I came home, my amazing sister-in-law had been at my house and cleaned up A LOT. She also left some sweet little gifts for Audrey and I. We seriously lucked out with amazing friends and family, didn't we?! :) I flew home Sunday morning, got some stuff done around the house, and then Audrey and I were off to a fundraiser. Did I mention how incredible our friends and family are?

With the help of family, friends, acquaintances and many total strangers, some friends and family put together a fundraiser for our family. It was... incredible. I seriously don't even know how to describe it. I was running on a few hours of sleep and was already incredibly emotional thanks to all that had happened and the incredible postpartum hormone craziness (Audrey wasn't even 2 weeks old yet). We even made our local paper (article here). There were SO many people at our fundraiser. I cried. A lot. There were hundreds of people. Some were friends or family of my family or Isaiah's. Others were co-workers (past and present) of myself, Isaiah, or of someone in our family. Some were total strangers. There was a dessert auction, a silent auction, a live auction, a raffle (or maybe more than one), etc. People were so loving and giving. It was such a humbling night.

Our community just came around us to support us during such a difficult time in our lives. It was such a surreal experience to see all of these people there for us to offer their love, kind words, prayers, hugs, and financial support. We couldn't have made it financially without that fundraiser. Without a doubt. I was in total awe the entire night. A support system like that is so much better than anything I could've imagined or hoped for. We are truly blessed and we do not take that for granted.

After the fundraiser Sunday night, I had 2 more days to get some stuff in order before I flew back to Seattle with Audrey. I collected all of our mail (BILLS... lots and lots of bills), met with my boss to discuss a plan, re-packed for the 3 of us for a few months. It was a lot to do in a short amount of time but I did not want to be away from Isaiah for very long. I wanted to get back as soon as possible.

While I was gone, Isaiah's orthopedic surgeon who did the cancer removal surgery, gave him clearance to put as much weight on his right leg as he could tolerate. This was incredible news as he hadn't done that since the beginning of September. The next few weeks were rough.

I know that Isaiah felt bad that Audrey and I spent all day with him in the hospital, but I wouldn't have had it any other way. It wasn't hard for us. We stayed in an apartment very close to the hospital. We'd get up in the morning, get ready, and head over to the hospital where we usually spent the whole day. As it got closer to bed time, I'd pack Audrey up and head back to the apartment so that I could get her to bed at a decent time.

Those weeks were very tough on Isaiah though. Not only was he in the hospital (one of his most hated places) but he was in a lot of pain and working VERY hard to re-gain his strength. He had to learn how to stand again. It took a long time. He was basically starting from scratch and for a 6'5" guy, that is NOT an easy task. Especially because he couldn't use his arms at all. So not only was he weak from everything he'd been through, but he was only able to use his legs which at this point, were the weakest muscles in his body.

The staff at UWMC is absolutely incredible. They fought the insurance company for us to get him into the inpatient rehab unit (so he could avoid going to a nursing home until the 6 weeks were up). In the rehab unit he learned how to stand again. How to walk again. It wasn't fast and it wasn't easy but he made huge improvements every single day. He was determined.

Some of his amazing college friends actually came to visit while we were there. They actually flew to Seattle for the weekend to come see him. It was awesome. It really lifted his spirits. While he was in the hospital we had family and friends periodically coming to town.

Finally the day had come, he was being discharged from the hospital. After his cancer removal surgery, he spent exactly 4 weeks in the hospital. This time, he spent almost 8 weeks in the hospital. He was SOOOO excited to leave. We were required to stay in Seattle (a few minutes from UWMC) for almost 8 more weeks.

While stay in Seattle we did get to spend a lot of time together, the 3 of us. That is time that we wouldn't have had together if we'd been at home. I know that Isaiah would have been working. It was so nice to get that time together. We did go to the hospital most days for blood work and various appointments but we were able to feel a lot more normal. We went to the grocery store, went to lunch, spent time with family as they'd fly in to visit for a few days here and there.

It was hard to be away from home for so long but there were some really good parts and overall, the fact that Isaiah was alive and healing... it was more than worth it. Once Isaiah has been cancer free for a few more years, we hope that we will be able to get him listed for a heart transplant. More than likely, we will end up back in Seattle for a few months if he is to get a heart transplant in the future. For now though, we want to be boring. We want uneventful, boring lives. We want to be home, see our friends and family, spend time together as a family, go to work, and avoid any more hospital stays. Isaiah has had to go back to Seattle a few more times since we got home in mid May 2015 but for much shorter periods of time and ironically none of them had to do with his heart or his LVAD. They were actually due to an infection that developed in the incision from his cancer removal and then to go back again for scans and follow up with his oncology team at Seattle Cancer Care Alliance.

I seriously can't even describe how thankful we are for the incredible people who have been placed in our lives over the last few years. The teams at Seattle Cancer Care Alliance and University of Washington Medical Center are absolutely incredible. We actually wanted to bring a few of them back to Alaska with us. They are skilled, knowledgeable, and caring. As they did rounds, they'd stop and talk to me and Audrey. They saved Isaiah's life. They became invested in us. They care about us.

The last few years have been so up and down. We have experienced some of the scariest, most awful days of our lives, and some of the happiest days of our lives. It has been a whirlwind. I am so so grateful for everyone who has prayed for us, offered kind words or words of encouragement, offered financial support, a hug... everything. We could not be where we are today without each and every one of you. Thank you so much. You have changed our lives.

This is by no means the end of our craziness, I'm sure. But for now, we get to be normal... well our version of it anyway.

I'm sure that there will be random follow ups in the future or moments of rehashing something else that I didn't recap. Obviously, there has been a lot happening! :)

Daddy-Daughter time watching March Madness 2015