Slideshow

Yesterday it was a month since Henry died. To say we miss him is the most ridiculous understatement. I think we're still just trying to get through each day. We are finding happiness in the fact that Eli's feeling better and stronger each day. We know there could still be bumps in the road for him but right now he's doing great. 

Here's the photo slideshow we played at Henry's service. 

Video from Henry's Service

I thought you might like to see the video that Ms Kluth and Mrs Freeman played at Henry's memorial service. We have been very lucky to have them and so, so many others from school in our lives. Special thanks goes to Ms Wallace for putting this together - it's amazing!

Eli's Hopes & Dreams

At the beginning of January Eli brought home this letter from school for Troy and me. Can you read it? It says: 

Dear Mom and Dad.

I made a new hope and dream for 2013. It is I hope to help others when they need help. I hope to get better at math strategies. I'm thankful for you guys because you are not afraid of telling me bad news.

From Eli

To say this brought tears to my eyes is an understatement. As you know, we've had to give Eli quite a bit of bad news lately. This past week we had to give him even more. 

As it turns out, Eli also has Adrenoleukodystrophy (ALD). We've actually known about this for a while but it was unclear if his disease was active &/or progressing. Eli had a repeat MRI recently that showed a small but clear amount of progression of the demyelination of his white matter. Unlike Henry though, his is early and at this point he's showing no outward symptoms. Due to that, Eli is eligible for a bone marrow transplant (BMT) to halt the progression of his disease. 

We're in the process right now of planning for his BMT. We're hoping to get started at the end of February at Amplatz in Minneapolis. I'm not sure if I've mentioned it before but the doctors at Amplatz are the premier experts in the world for ALD patients. They are one of the only hospitals that does BMTs on these boys. We are incredibly fortunate to have this right in our back yard.

Eli's schedule will go something like this:

• 5 days of outpatient pre-op testing and lab work
• Couple of rest days
• 3 or 4 days of inpatient chemo
• At least a week of rest days at home
• Then Eli will be admitted to the hospital for about 6 weeks. 
• This will include 8 days of chemo, then a rest day, then transplant day. After that he'll spend the rest of the time recovering.
• Once he's ready to come home, we expect him to be home-bound until around October.

This is a long, scary process. Eli is going to be a very sick little boy for a while. But, we have every reason to be hopeful. Eli now has the opportunity to grow up to be a normal, healthy adult - that's amazing!

Think good thoughts for my little guy and my bigger little guy too. Actually we're all going to need them. 

Merry Christmas!

  

I don't usually write a holiday letter but this year I thought I'd say a little something. I'm not sure if it should be one of those letters where you get to hear about all of our health problems, doctor appointments and new medications or a brag letter about how awesome our kids are and all the cool things we've done this year. I guess it'll be a little of both. Lucky you ...

By now I'm sure you've heard that 2012 wasn't the greatest year ever for our family. In August, after months of worry and appointments and tests, Henry was diagnosed with Adrenoleukodystrophy (or as Eli more appropriately calls it, Adrenoleuko-catastrophy!). And even though we just found out, his disease is too far progressed to qualify for the only treatment available, which is a bone marrow transplant. Every day we are learning how to live with his terminal diagnosis. How to find joy in the little things and be thankful for the time we've been given. How to deal with our grief and sadness and frustrations. How to guide our boys through this journey. But mostly we're learning how to choose happiness. I'm not saying it's easy because it certainly isn't but we are trying. 

... cue the laundry list of stuff we did this year ...

It feels like our lives stopped there for a little bit but despite that we've had a busy and fun year. Earlier this year Henry played basketball and baseball with his buddies. He's also been known to fill our home with his loud and blaring passions for preteen sitcoms, questionable pop music and the Green Bay Packers. Eli, per his norm, is not playing any sports with the word "ball" in the name. But, he has set up a dojo in our basement where he is training Troy and me so that we can fight against each other in a mixed martial (marital??) arts battle. The boys have had countless play dates, field trips, get together parties and tons other fun activities. This year we added two new faces to our household. The boys are the proud "parents" of Simon, an 18-month-old tiger kitty and Scarlett, an 8-month-old black kitty. It's been a lot of fun having them be a part of our family. Troy ran Grandma's Marathon this spring in an impressive time of 3:14:58! I did not run a marathon this year ... not in the traditional sense of the word anyway. We made lots of trips to Iowa to see everyone there and they traveled to the Twin Cities as well. We went to Twins, Vikings and Gopher football games. We went on an awesome vacation to Palm Springs, CA and Las Vegas right before school started this summer. Basically we spent a lot of time with our friends and family and had a lot of fun.

... awkward segue to sappy part ...

Troy and I are incredibly proud of our boys. They are facing things kids should never have to face. Their challenges are different but they are both meeting them with so much bravery, honesty and love. Each week the list of things that Henry can't do anymore and the list of new things he must do each day gets longer but Henry is amazing, taking it all in stride - we hear "as ready as I'll ever be" quite often. Sure, he gets frustrated just like everyone else but he is the happiest, most loving kid ever. He greets the world each day with a smile on his face and joy that is completely contagious. He is quite charming and endears himself to everyone around him. And Eli. Eli is amazing. He is the little brother turned big brother. He is ever mindful of Henry. He is matter-of-fact and stubborn; dealing with his challenges with a quiet reserve. But he is also funny and kind and insightful. He incredibly imaginative and makes friends everywhere he goes. He is helpful and so grown up and charming but in a completely different way than Henry. 

Troy and I could not be luckier. We have two of the most precious and amazing children. We don't know what next year will bring but we do know that we'll be facing it together, surrounded by all of you. 

Happy New Year!

Christmas Past

I love Christmas cards and I especially love cards with my boys' sweet faces on them. Here are our past cards. I don't have this year's card done yet but soon ...

It's actually kind of crazy looking at these because they all seem like just yesterday. I can't believe this is 8 years worth of cards. As they say, the days are long and the years are short. Isn't that the truth?

I hope you're enjoying this holiday season. I know we are!

Happy Thanksgiving

I have so much to be thankful for this year. It's hard to put it all into words.

I am thankful for Troy who, like always, is completely awesome. This man does everything and anything without complaint. He loves our boys with a fierceness that I adore. He takes care of them as good or better than me. He lets me cry and be sad without trying to fix it for me. He is amazing. I should tell him that more often!

I am thankful for our families who love the boys like their own. I am so, so thankful that they are all healthy and happy! They take whatever burdens off of us that they can. They are walking this path with us, holding our hands, giving big hugs, making sure we never feel alone.

I am thankful for all of our friends who have surrounded us with so much love, friendship, kindness, generosity, and support. I am thankful to live in a neighborhood full of truly wonderful people. A place where we've become good friends with some really awesome families who we wouldn't have met otherwise. We really hit the jackpot!

I am thankful for the boys' school. They have been exceptional and have stepped up beyond my wildest dreams. The teachers and staff are some of the most compassionate, caring, devoted people I've ever met.

I am thankful for our amazing doctors, nurses, therapists, hospital & clinic staff, social workers, child life specialists. They completely rock. I am thankful we have insurance to pay for these things. I am thankful we have jobs that gives us insurance. I am especially thankful for the flexibility both of our workplaces have afforded us this year.

Mostly I am thankful for my boys. I love them like crazy! Knowing what I know now, I would not change a thing. The love and joy they give me is immeasurable. They have taught me so many things that I didn't even know I needed to know. They are my heart. I am thankful for each and every day I get to spend with them.

Here's What Happened

I'm sorry to have posted the news about Henry and then disappear. I'm not the best blogger in the world, that's for sure. I did want to give you just a little more info on how we came to his diagnosis.

In January of this year we started receiving emails from Henry's 3rd grade teacher regarding problems he was having at school. What seemed like all the sudden his attention span decreased dramatically. His handwriting began changing and got to the point where it was illegible. He could not follow along in class and his grades suffered. He was exhibiting very anxious behaviors - biting &/or breaking pencils, picking at his skin, ripping his clothes. He went from being above grade level in basically every subject to pretty much failing by the end of the school year. 

During the first few months of the year we did a lot of talking with Henry, trying to figure out what was going on. What changed? What was causing him to have so many problems? He was as perplexed as we were but he did not seem one bit worried about it. He didn't like that he couldn't get his homework done and got frustrated at certain things but it didn't really bother him too much.

Around this same time we had to find a new pediatrician b/c of an insurance change. We found a new clinic and took Henry in - this was in April. She was not super helpful and basically told us that he had anxiety. We should feed him more protein and make sure he gets enough sleep and to just try to make it through the end of the school year b/c summer would be better. We had Henry see the school psychologist but there wasn't enough time left in the school year for her to really gain any real understanding about what was going on with him. We then had him see an outside psychologist to go through all of the ADHD, anxiety, mental health testing to see if that would shed some light on what was going on. We had a couple of visits with him and left with no answers whatsoever. At one point I asked him "do you ever see kids with these types of symptoms and have it end up being something medical?" and he emphatically said no, never. We went back to the pediatrician and she humored me and ran some very basic tests on Henry and they all came back normal. Her great advice was for us to be nicer to Henry and let him just be a kid. Ummm, OK. At this point I knew we had to cut ties with all of these people b/c they had already made up their minds that Henry just had some sort of anxiety. The problem in my mind was that they were not listening to us. They didn't believe us when we told them that all of this just started in January and before that he was perfectly normal. 

I decided to email our old pediatrician and ask for her advice. I sent her a list of everything that was going on and that same day I had a phone call from her telling me that this was indeed not normal - that it could be anxiety-related but it also could be something else, something in his brain. She was terrific and got us names of recommended pediatricians. She was very worried and that made me even more worried. 

We ended up with a new pediatrician at Children's Hospital and he is amazing. We saw him late in the afternoon on a Tuesday (this was in August) and before 8am the next morning he had us set up with a brain MRI, an EEG and a neurology appointment - all within a few days. After struggling with this was 7 months someone was finally listening to us and taking everything really seriously. It made me feel better but also so much worse. 

This post isn't meant to throw anyone under the bus. Apparently our story is very typical for these kids and their journey to get diagnosed. Most doctors will never see Adrenoleukodystrophy in their entire career. I hope that now that ours have, they will use that knowledge to be better doctors. 

The bottom line is - trust your instincts. Do whatever you need to do to feel comfortable. You are the expert on your child, not the doctor. 

I am the expert on this awesome little person. How lucky am I?