Here we go again...

You know that time in your life, when everything is going okay?

I mean, you still have to pay bills and do the dishes, but in general, life is pretty good.  You have enough money to pay those bills and put food on those dishes.  Your concerns are about your kid's grades and what we should make for dinner and who's going to fold the laundry. You start discussing plans for next year and a few years down the road.  Your monthly schedule is filled with things like nail appointments or school concerts.  And, for a few moments, you almost feel normal.

Then life just kicks you in the ass and reminds you that you are NOT normal. 

Yea, that would be us.

A quick background, for those who don't know us:

Ryan was born with a genetic disease called Hirschprung's, where the intestine doesn't work correctly.  Through multiple surgeries, we couldn't fix it, and by the time he was a year old, we needed a liver and small bowel transplant.  We got our miracle transplant in November of 2005, when Ryan was almost 2.  However, about six months later, we discovered a blood clotting disorder (which was responsible for lots of trouble for the previous 2 years), that damaged our transplanted bowel. 

Over the next 3-4 years, we spent most of our time at UCLA Children's Hospital, dealing with infections and complications.  However, he was finally growing and starting to live his life. 

In 2011, we moved to Montana (a radical idea, I'm sure).  I don't know if it was the clean air or the cold weather or if his body just decided it was time, but he finally began to thrive.  The infections almost stopped, he started attending school and making friends, and life became almost normal.  I actually began to forget his medical record number and baseline blood numbers (H&H, PT, PTT, Bili vs total Bili, WBC, etc)   There are nurses on the floor who do NOT know us.  I mean, hey, life was pretty good.  Almost normal...

Okay, so we still had TPN (an IV solution for his nutrition) every other day. And, he was pretty far behind on his schooling.  And we did run into the occasional infection or issue (like having our line replaced, as an outpatient, because he had grown too much).  But, we were good.

About 2 weeks ago, we noticed a small, marble sized lump on Ryan's neck.  A little strange, a little tender, but not too worried.  We took him to the hospital, where they kept him overnight and ran some tests.  The lumps (there were about 3 by this time) were his lymph nodes, and they were swollen.  Not terribly, but enough that they were noticeable.  Some blood work was taken and ultrasounds done, but everyone figured it was just an infection, and sent us home on some antibiotics, with a follow-up appointment the next week.

So, the following Monday, we come back into the hospital, and he's checked out again.  The blood work came back as positive for Epstein-Barr, the virus that causes mononucleosis. Ahh, Ryan has the 'kissing disease', which is even funnier when you know Ryan.  He will be tired and his lymph nodes will be swollen.  It might take 4-6 weeks for him to recover, so that kinda sucks, but we can handle that.  Lots of sleep, breakfast shakes and extra TPN to keep him from losing weight.  School is almost out anyway, so yea, no worries.  It could be so much worse...

Over the next week, Ryan stayed home from school, mostly sleeping.  We head back to the doctors on Monday, and he looks a little pale and his lymph nodes are now bigger.  But, this isn't unusual, so we go home.  Then, this Thursday evening, Ryan starts complaining about his abdomen.  He says it hurts.  Ryan doesn't usually complain about pain, so this is new.  He is holding his side, where is spleen is located.  Hmm, we call the docs, and they said to keep an eye on it and let them know if it gets worse.  We get through the night, and he seems to be feeling better by Friday morning. 

However, on Friday afternoon, Ryan starts doubling over in pain, screaming that his side hurts.  Oh jeez, we start going over options, the first of which is that his spleen has ruptured.  Terrified, we race into the ER for a CT scan.  (quick shout out to the ER, which got us into a room in less than a minute from walking in the door)  Doctors checked us out, gave him some pain meds, did some blood work, a CT scan and an X-Ray. 

The good news, his spleen was not ruptured (although it was highly enlarged).  The bad news is that his White Blood Count was over 65,000 (normal is less than 11,000), which is bad.  The CT and xrays suggest that there is some type of lymphoma beating up his body.  Oh, and a small infarction (lack of oxygen causing a part of it to die) in his spleen, which was causing all his pain. 

We jumped on the Mercy Flight transport plane over to Seattle Childrens around midnight on Friday evening.  (While Benefis is a wonderful hospital, the Seattle Transplant team took over Ryan's transplant care for UCLA when we moved to Great Falls.  Whenever we need more specific treatment, Benefis has flown us over to them.).  Patrick and Ryan arrived early Saturday morning, and has been meeting with the Hematology/Oncology and Transplant teams.

The team is keeping him comfortable with morphine and fluids.  They have him in the Pediatric Intensive Care Unit (PICU), so they can keep a better eye on him.   He's a little overloaded with fluid (so he looks very puffy), so they are using meds to try to keep the fluid in his system and keep him hydrated.  His blood is also not clotting correctly (really slow), so they are looking at that. 

Around 6pm this evening, the Hem-Oc doctor came in and explained that we are pretty sure of a diagnosis.  Ryan has T-Cell Acute Lymphoblastic Leukemia.  Leukemia is a cancer of the white blood cells.  (the snarky side of me is saying "REALLY?  Was this necessary??")  Oh joy, another medical field that I need to learn about and lots of new numbers to analyze and memories... So glad I'm a math person. 

Sooooooo, now the fun part.  The doctors need us to stay in Seattle until he finishes the course of treatment, which should last between 8-12 months.  He will start with some fun steroids (which bring out the worst in him), and then start up Chemotherapy.  The current plan (and anyone who knows Ryan knows that we just don't plan... ever... he NEVER follows the plan) is to stay in the hospital until he's finished the first course of treatment and is stable.  Then we will have to stay in the Seattle area for the next 7-10 months, as he finishes the rest of the treatment.  With cancer, the theory of chemotherapy is to kill off all of the mean nasty T-Cells.  Of course, you also kill of the immune systems in the process. 

We are so lucky that Patrick can work from anywhere.  He called his boss today, who was extremely sympathetic.  In all honesty, Patrick will probably get more work done from the hospital than home (since he doesn't have a gaming computer there...😉 )  Once we are released from the hospital, we'll probably get a short term furnished apartment (ahh, the memories... We had an apartment in LA for over 2 years after his transplant).  

Grandma Ann and Grandpa Greg have offered to take over for Patrick when he needs a break.  I've talked to Allen, Connor and Kathryn, who are worried, but with faith and trust, are dealing with it in their own ways.  These kids have dealt with Ryan and his medical issues for so long now, they have learned to take each day as it comes. 

As for Ryan, he just wants his ice chips and sleep...  Once he feels better, I'm sure he'll have questions, but he usually handles medical issues really well.  Just give him his movies and his games and his lemons, and life is grand.

I'll be trying to update daily for a while, until things get stable.  If you have any questions, you can post them here or on Facebook or you can try to call or email me.  (if you know me, you know I'm more than willing to talk about what we are going through).  We really appreciate your thoughts and prayers.  We know from personal experience how useful prayer is, especially in times like these. 

I've often had people ask:  "How do you get through something like this?"... The funny part is, it's not like you have a choice... There is no point at which we can throw our hands up and say, "That's it, I'm done."  This is my son.  This is my family.  You get through this by getting up in the morning, getting through the day, learning everything you can learn, and thanking God that you made it through today to get up tomorrow. 

Thank you all for your support and love and prayers!