Finally Home

So I have been super slacking on my blogging this last 2 months, mostly because I have been at the hospital and haven't had my computer. But I also think that I haven't because its hard to only write bad news. Now that Lily is officially done with Delayed Intensification I'm praying for no more drama! I think that everyone in my house is ready for things to calm down and go back to whatever normal is. I don't want to dwell too much on what happened in the hospital because its still so stressful to think about, but I will give you the short version. Lily was taking an oral chemo (Thyoguinine or 6TG) in her last treatment phase and it caused her to develop a very rare but potentially serious liver disease called Veno-Occlusive Disease or VOD. Its basically where the little blood vessels inside your liver form little clots that wont allow the blood to flow properly. If the blood cant flow through it than the liver cant accept any fluid to flow through it and filter out to the rest of the body. We took her into the ER initially for dehydration and they kept her one night, gave her 24hr of IV fluid, and sent us home. The next morning her stomach was very engorged and firm so I took her back in. All the IV fluid that they had given her just resorbed into her abdomen where it was just sitting and unable to be used by the body. An ultrasound was done to confirm her VOD diagnosis. After we knew what we were dealing with her Drs had the task of doing a large fluid shift in her body. She was given a diuretic to block sodium at the bottom of the kidneys, then she was given a protein which sucks fluid into the blood vessels and then another diuretic to flush everything out. After three days of this she was able to loose over 6 lbs of water weight. Lily only had a moderate case of VOD and still doesn't have 100% normal liver function but the VOD did reverse its self and shouldn't ever be a problem again. It took about a good week in the hospital before we really started to get some positive responses form the Drs that the VOD was reversing permanently. On top of all that we also had to deal with Cdiff which is a contagious bacterial infection that you get in your gut. Most likely Lily got it from taking so many antibiotics for so long. So she was put in isolation at the hospital which means no visitors from other patients, no playroom, and if we left our room she wasn't allowed to touch anything. Fortunately her Dr. felt bad for us and said that we could do outside! That was so amazing. One of Lily's friends actually brought her a huge bag of 'Frozen' things, stickers, place mats, coloring books, and her favorite thing a singing Ana dress. She put it on for our trip outside and stood on the grass and sang to everyone at the hospital. It was so adorable.

Okay so I'm just so glad to be HOME!!! We went back to clinic yesterday and they said that she wasn't quite ready to start the next phase of treatment yet so we get a week off and I couldn't be more happy. This is going to be a week to play! We have been cooped up for so long we just want to get out and enjoy the weather!

With all the big and little complications that she has had lately we are really understanding how lucky we have been up until now. I am very hopeful that we have gotten all of our big drama out of the way now, and things will be smooth sailing from here on out. We truly appreciate all the love and support we get from all of you and I'm really hoping that my posts from now on can be fun and uplifting!

Lazy and Unstructured

I came to the realization today that life is nothing at all what I would have planned it to be. I suspect that at some point everybody will come to this realization in their lives but for me, it was still a shock. I was standing in line at Winco to buy a few groceries and I realize I'm wearing yoga pants with yogurt stains on them, a cheap tank top, and my hair is a humid frizzy mess. Makinlee is also covered in yogurt and somewhat causing a scene rocking back and forth in the cart yelling. Then I have my tiny bald headed 3 yr old wearing a bright pink hat, a medical mask, and brown cowboy boots, with a white tank top that unintentionally allows her port access to hang out and black sparkly leggings. Let’s not forget about my husband, wearing his basketball shorts and flip flops which I don’t usually associate with being too informal, but somehow it seems less organized when you put everything together. Now honestly, this is not untypical for my family, but as I look around the store, I'm realizing that we are the people in line that most others (including myself in my pre ALL life) would have judged me as a lazy and unstructured mother. I realize at that moment today that my life is just that, a little lazy and unstructured. Allow me to elaborate...

Lazy; having 2 kids in diapers, (one of which has recently discovered that she can move around pretty quickly and that its fun when mommy has to chase her naked bum around the house) It’s not uncommon to find dirty diapers laying around the house in places other than the garbage can outside.

Lazy; when you do 2 weeks’ worth of laundry in 1 day but don’t get around to folding it so you spend the next week digging through the clean cloths piled on "the small couch"  until laundry time comes again and you decide you really should finally fold the laundry from the previous week.

Lazy; when you are so busy during the week that you eat out like 3 nights in a row because you are too exhausted to cook and subsequently don’t do the dishes the entire time thinking that since you didn’t cook dinner the dishes "aren’t that bad" and then when you finally do the dishes its 2 dishwasher loads full, which then again prompts the urge to eat out having just cleaned the kitchen and having gotten all the dishes clean. Vicious cycle

Lazy; putting chicken nuggets in the oven and cooking peas in the microwave for lunch because you are so ready for nap time so you can just sit after being up most of the night with a sick child. But then the guilt sets in that you are sitting on the couch instead cleaning. Refer back up to the laundry and dishes.


Unstructured; spending 13 nights in the hospital. Need I say more?

Unstructured; Coming home from said hospital stay and everyone in the family (besides our daddy who goes to work) sleeps in until 10am, takes their nap from 3-5pm, (excluding mommy) and then stays up until 9pm. Mommy is usually up well into the night. I think it’s got to be an actual syndrome, mommy-is-exhausted-all-day-until-the-kids-go-to-sleep-and-then-she-gets-a-burst-of-energy-so-is-up-all-nightitous.

Unstructured; going to the Dr. at least once a week and planning to spend all day there because the appointments can take anywhere from 2hrs to 6hrs easily.

Unstructured; having to go into the ER for every concern that comes up during nonclinic hours for something even as little as a minor rash, to UTI symptoms, to an unknown fever over 100.5 while neutropenic. Also expect either blood and or urine samples every time and it’s probably best if you just keep an overnight hospital stay bag in your car because its quiet likely that once you go in, its 2 days at least before you get out.

Unstructured; planning your day around having to give IV antibiotics at exactly 12:10pm because it takes an hour to go in and you have to give chemo at home at exactly 1:15pm and you dent want to have to give too much heparin (anti-clotting agent) through the port. Which is especially hard when you have an appointment with one specialist at 1pm one day and a different specialist at 1:15pm the next day.

Unstructured; giving your baby a bottle in bed (despite your best judgment and knowing the negative health risks associated) because that’s what she has gotten used to and sometimes you just need to focus on the steroid raged child in the living room and knowing you can only do that if you put the baby down for an early nap.

Unstructured; The million mixed emotions you feel as you take your 3 year old daughter to get her head shaved while she sits on your lap screaming, or to know that you are taking her to the hospital to get a lumbar puncture with intrathecal methotrexate and 4 other new chemotherapies and other drugs that are simultaneously going to make her feel exhausted and nauseous for days but also allow her to live for years.

You read all those facebook posts that say "enjoy every single second of life cause you never know when it will be your last!" (Which I fully agree on in so many ways) But also make me so sad because the thought of my daughter spending the last years of her life being spent in DRs offices being poked and prodded constantly, having no hair and not growing at all while still losing weight, and her having to miss out on normal 3 yr old activities like preschool and dance class makes life hard to enjoy. I prefer to miss those moments. With September being Childhood Cancer Awareness month I am even more emotional. We are 4 days shy of 6 months of treatment and I still feel so new at all this. Honestly the last 6 months have seemed like years and counting. But then I look at Lily. Strong, resilient, polite and ridiculously smart and its then I realize I have the duty, and honor, of calling this amazing human my daughter. Then I look at Makinlee. I peer into her piercing blue eyes, and see her humor, resilience, and forgiveness for the inevitable lack of attention she has to work through. I know with Makinlee it’s even more important that I show her how much I love her.

I honestly know, despite the fact that Lily is so torn apart from her friends, that I have to fully accept that this cancer situation isn't going away! I know I have to hit this thing head on. IT"S NOT EASY, but as parents it’s the only choice we have! So I guess if you are going to judge me for my house being a pig pen, or my whole family’s clothes being dirty when we are out grocery shopping, or my lawn not being mowed just go ahead. But I know that we are mostly just in survival mode and usually on the verge of laughing so hard you cry, which then turns into real sobs, or just going just completely crazy (and then no one is safe). I guess my point is I don’t have the time or energy to make my whole life the happy fun charismatic life I used to have, we are too focused now. But I will continue to smile. I will continue to laugh at funny movies and plan pranks and breakfast-in-bed for dad that gets to sleep in. I will still enjoy making Halloween cookies and shopping for a costumes, I’m still excited to sit at Thanksgiving dinner surrounded by family, and I will still get giddy while figuring out what gifts to give Lily and Makinlee from Santa that give them real hope.

I guess my goal this next month is to keep the hope and trust everything will get better. I trust life will send us down the right path and when this is all over, we will be a stronger family and love more deeply.