Luke's Life

8 Years Ago

lukasvoss — Tue, 21 Jun 2011 04:00:33 +0000

My life turned upside down 8 years ago. June is always a weird month for me. I guess that’s how anniversaries are – whether they mark good or bad times, they are reminders of time passing from some initial big moment that can bring you right back there as if it were yesterday. 8 of his not even 10 years of life have been spent battling and enduring damage from tumors that have invaded his spine and brain. I’m not sure how to feel. I’m happy that he’s made it 8 years but so sad when I think about all he’s had to go through these past 8 years. June is tough for me.

MRI

lukasvoss — Thu, 10 Feb 2011 06:36:15 +0000

Luke had an MRI this morning. No significant change since his last one in November. Which is just fine. Not the best news it could be but not the worst either. Just fine.

Reflection

lukasvoss — Sat, 01 Jan 2011 02:48:22 +0000

I think the reason I try so hard to stay “in the moment” is that when it comes to Lukas, the past and the future are scary and emotional and heavy. I’ve had a really rough week thinking about what could have happened with Luke if things hadn’t turned around for him when they did last week. The severity always hits me after the fact. If I think about the number of times that Luke has pulled through I realize just how lucky I am to still have him in my life. And if I let myself think about the future struggles he will most likely encounter, it is just too much to handle. So I am grateful that we have all made it through another year and I’m going to continue to try to stay “in the moment” as much as I can in this next year. And in this moment right now I have both my boys at home on either side of me on the couch with a dog at our feet…life is pretty darn good at this moment.

Happy New Year!

Follow-up

lukasvoss — Thu, 30 Dec 2010 00:44:03 +0000

Luke had a follow-up appointment with Dr. Geyer (oncologist) today. His lungs sound pretty good and his oxygen saturation stats are okay. He is going to restart his chemo starting tomorrow morning. He has been pretty happy and content to be home and it is so apparent that he just feels so much better.

I, on the other hand, am not doing as well. I’m having this weird post-situational depression I think. I guess I had to maintain a certain amount of resolve to get through the worry and strain of the 10 day hospital stay and now that it’s over my resolve is gone and I just feel blah. I know it will pass.

GOING HOME!!!!!

lukasvoss — Mon, 27 Dec 2010 18:47:38 +0000

Oh my goodness I’m not sure I even believe the doctors. I kept waiting for them to say that they just want to wait one more day…but it’s true – we get to go home! I was so excited to tell Benson and he let out a big “yay!” Oh I just can’t wait for all of us to be home together. Feels too good to be true.

Monday morning – 10th day here

lukasvoss — Mon, 27 Dec 2010 16:59:50 +0000

Luke ended up having 7 seizures yesterday. Rough day for him and so disheartening for me. Was feeling like we may never leave. Then one of the heme onc doctors came down late last night and said she thought she figured out why he was having so many seizures all of a sudden. Apparently one of the IV antibiotics that he was on was interfering with one of his anti-seizure meds. So they went ahead and switched him to his oral antibiotic that he will be taking at home and redosed his anti-seizure med to try to catch up with the level it should be at in order for it to be effective. They just drew labs this morning and they will recheck the anti-seizure med level to make sure it is coming back up.

THEN…he came off of oxygen and did really well for the last half of the night. We haven’t seen the doctors this morning for rounds yet but I am really hoping for good news.

Benson’s Christmas Gift

lukasvoss — Sun, 26 Dec 2010 19:21:17 +0000

So if you have ever asked Benson what he has wanted for any Christmas or birthday over the last few years you know that his response has been: a dog, a real dog. He has asked and begged for a dog for as long as I can remember and I just haven’t felt like it’s been something that we can take on in our lives. Until I heard about the perfect dog looking for a new home. He is an older dog…a big black soft fluffy mellow easy going loving dog. My plan was to get him under the tree for Christmas morning so Benson could have the best Christmas ever. Then we ended up in the hospital. I had been trying to figure out how I was going to make it still happen for Benson and then I came up with the perfect plan. This is how it all went down:

Friday afternoon I left the hospital and came to my house where Benson was with Uncle Pete. I walked in the door and told Benson…”You are never going to believe what happened to me! You know where that Christmas tree is at the hospital? Well, I was walking down to get some coffee and there was one of Santa’s helpers by the tree and I heard him say, “Are you Benson’s mom?” and I said yes but I was kinda freaked out and he said, “Well, Santa really wants Benson to get his Christmas present a year early but you have to go to this address to go get it” and he handed me a piece of paper. So I found someone to sit with Luke and came here to get you so we can go to this address.” Benson was jumping out of his skin with shock and excitement. I had him get his shoes on and hurry out to the car to go to the address. The drive there was pretty fun…Benson was trying to figure the whole thing out and wondered if we were driving all the way to the north pole. He kept saying that it was the coolest and kind of freakiest thing that had ever happened to him. We pulled up to the address and this girl came out and asked Benson if his name was Benson. Benson said yes and she said she had a letter for him. So he opened it and started reading it outloud:

MERRY CHRISTMAS 2010

Dear Benson,
You have been a very good boy this year. I know you are having a tough time right now, with your brother being in the hospital, and your mommy being gone some, too. I thought you could use an early Christmas present. You deserve it! Please take good care of Bear, your new buddy. He is a very special dog. (at this point Benson looked up at me in shock and could barely finish reading the letter) I chose you to have Bear, because I know you can take great care of him. There are some instructions for you and your mommy to help you know what to do. I know you will be Bear’s best buddy. That is why I wanted YOU to have him.

Merry Christmas, Benson,
Love,
Santa Claus

And out of their garage comes a big fluffy black dog with a bow on him. Pretty magical. Benson and I had such a great moment and neither of us could stop grinning. The ride back home was pretty fun and he’s been in heaven since and loves saying that he has a dog. It sure made leaving him again to come back to the hospital a little easier. He has decided that Santa must have saved him from the snow and wanted Benson to take care of him. It felt so good to have a little joy on Christmas Eve day and Benson loves hearing me tell the story again and again.

Sunday morning

lukasvoss — Sun, 26 Dec 2010 19:08:32 +0000

Luke slept alright last night but had another seizure this morning. He is so pale and not looking so hot. He is still on oxygen. His lungs are sounding pretty clear now but he’s not moving much air in his lower lobes. I’m supposed to get him to take deep breaths. Not working out so well. I’ve got him laying flat which he’s not happy about and if he feels better later I’m going to try and get him in his wheelchair and see if that helps him move a little more air. Feeling like we are going to be here forever.

And now seizures

lukasvoss — Sun, 26 Dec 2010 05:19:31 +0000

Luke’s had two pretty big seizures tonight in the last couple hours. Requiring even more oxygen now. Feels like we will never get out of here. And he just keeps repeating, “I want to go home.” over and over and over again every 2 seconds.

Christmas in the hospital

lukasvoss — Sat, 25 Dec 2010 18:43:01 +0000

We are celebrating (?) Christmas in the hospital this year. Doesn’t feel like much of a celebration. Benson is on his way and we are going to open up all our gifts here with Luke. I need to put a smile on my face for Benson’s sake because he is the one that is most impacted by this. Not sure when we’ll be out of here. Luke is still requiring oxygen.