Monday, December 28, 2009

Home Again

Picture quality not the best, but the kleenex up the nose cracks me up.

Amanda came home this afternoon. She looked pretty miserable yesterday afternoon, but started perking up in the evening. The fluids and antibiotics seemed to kick in. She's still on the IV meds. We're happy to have them at home rather than in the hospital now that she is past the worst of it. She's still coughing a lot, but is happy and acting more like herself. It will be several more days of rest and recovery to get her blood counts back up. She'll start chemo again once she bounces back. We're glad it was only three days at Primary's.

Sunday, December 27, 2009

Virtue and Vice

I'm very glad that Amanda is in the hospital. I am much less worried now that she's here. She has been diagnosed with croup. It fortunately has not turned into pneumonia. That was our biggest concern. She was admitted because her immune system was dangerously low and she likely would have developed a serious bacterial infection. She's been taken off her chemotherapy and already her immune system is inching back up. The doctor thinks we can be released tomorrow. She'll be wiped out for a while. Scott stayed the night with her and he said she only slept one hour. She finally fell asleep on my shift. Erin has the same crud, but fortunately Will is OK. Caring for two sick kids and a nursing baby has it's challenges. But being here reminds me that the last time was much harder and that handling this is much easier now. Amanda picked up the bug from school. I don't want to send her back. But as my brother-in-law pointed out, I can't keep her in a bubble forever. Amanda is just too social, and she has been so much happier since she went back to school. A couple days of misery is the vice to allowing her some social freedom.

I had hoped to post a bunch of pictures about Christmas but was obviously side tracked a bit. I had this feeling that we'd end up at Primary's some time this week. I'm glad it was after Christmas and we were able to enjoy the holiday together. There are a lot of kids up here that did not get that luxury. We owe a big thank you to the mystery Santa that brought over a big bag of extra presents for our kids. It made Amanda's day. She was so excited about Christmas #2. It will give her plenty to do to keep her busy while she recuperates. We appreciate the efforts made to make her life happier and ours a little easier.

Saturday, December 26, 2009

Blessings and Trials

As I'm typing this Amanda is getting accessed and a blood draw at the ER here at Primary's. Its the day after Christmas and we weren't able to make it through the holidays without an extra trip to the hospital. As we've looked back over this year we've been looking more forward to having it behind us. Amanda is being very brave having to go through this experience yet again. It is another reminder of how blessed we have been during our trials this year. She has a bad cold and a fever. A good round of fluids and antibiotics should do the trick. That and a lot of nintendo gaming with dad.

Update. It looks like we'll be staying the night here. Not where anyone wants to spend their Christmas time off but at least we know Amanda will be watched over.

Another update. These cool new phones that Mary Ann got us allow us to update the blog from the hospital. Unfortunately we can't text or call from the super dead zone of cell service. Teri gets a cookie for responding the fatsest. Wow.

Sunday, December 13, 2009


"I've got my hands on a miracle, and there's no way that you take it away."
- Foo Fighters

Amanda is settling down a bit and her health is fortunately very good right now. I suppose I should take a moment and divert attention from her to finalize the chapter to Will's health.

We finally have answers. We have known for a while, but wanted the chance to update our family first as he tested positive for a genetic condition that many other family members will test positive for as well. The condition is called Factor V Leiden. My first impression was, "huh?" Never heard of it, and yet, it's the most common genetic blood condition among Caucasians. It's a blood clotting disorder. The proteins in his blood do not function properly and are about 10 times more likely to clot than the normal population. It's a dominant Gene. Scott tested positive for it, Amanda tested positive for it, one of Scott's parents has get the idea. It also explains why Amanda's port gets clotted so frequently and can be tricky to access.

Will inherited the mutated gene and developed a blood clot in his portal vein near his liver. Apparently fetus' are very high risk to clot with this condition. Tossing a mom with hyperemesis into the mix did not help. I always felt that my poor health contributed to his. It will never be proven, but I will always believe that. The clot cut off necessary circulation for him to grow properly and caused the umbilical cord to be abnormally long. This in turn strained his heart and caused it to enlarge. The enlarged heart strained his organs which decreased his amniotic fluid. The combination of the two are what nearly took his life. At some point the circulation improved.

Overall, the lack of blood supply and strain on his body caused his pancreas and liver to not have adequate reserves to function on their own when he was born. They are now working properly, his heart is healthy, and the clot is nearly gone. He's developing just like he should, just at a smaller size. We are so relieved to have answers and to have him alive. Factor V Leiden can be a very manageable health condition once you know you have it. The prognosis is very good.

There you have it. He is a miracle. I will forever believe that the prayers of many are what spared his life. He is meant to be a part of our family. I've started to realize lately that God hasn't taken many of our families challenges away despite a lot of asking. Instead, he's given us a great gift to help take our mind off hardships. When Will's health was poor every night I would pray to God and say, "Thy will be done." Hence his name. Our prayers were answered and God's Will is here!!!

Friday, December 11, 2009

Ahhhhh - I hate steroids

As a mom, a quick venting session is needed. Steroids are no fun. I was told she'd be a little ornery for a few days a month during maintenance. That's an understatement! Its more like five torturous days involving a minimum of two hours a day of tantruming, three hours a day of moping, one hour of clinging, lots of whining, and going to school as an angel. And that's if we can get to school without everybody coming unglued as her yelling sets off Erin's. Amanda keeps telling me that she thinks she's on Santa's bad list because she's cried so much during treatment. Pretty heartbreaking. But if you saw one of her tantrums you might understand her logic. If she feels well enough tomorrow we'll let her visit him to clear things up.

I wanted to post a picture depicting all this drama but couldn't capture the moment in time. Amanda was screaming right next to Will and Erin was covering Will's ears to try and protect him. Here's the irony; he has ear infections and when I told Amanda about it she said that Erin's screaming must have caused it.

Friday, December 4, 2009


"It's not having what you want. It's wanting what you've got."
- Sheryl Crow

Amanda began school on Tuesday. After 8 long months she's finally back at school. Yeah!!!!
We arranged for her favorite Child Life Specialist from Primary's to come and do a presentation on cancer. The staff at Primary's are so good at what they do. Rachelle presented questions and information that I never would have thought of. Thank you Rachelle!!! Amanda showed off her colors of courage (the necklace she's wearing). Each bead represents a part of cancer treatment that she's completed. It really helps put into perspective how much she's done. Amanda's classmates were so responsive and curious. They are smart enough to understand what cancer is and young enough to be very non-judgemental. It's a great combination. Amanda was treated like a celebrity. The girls swarmed her at recess and all wanted to be her friend. However, she did come home and have a HUGE tantrum that lasted about an hour. I supposed she needed to decompress some stress. But since then she's been very happy and acting like herself again. School is wearing her out. We've had to up her bedtime and I still struggle to get her up in the morning. But she's sleeping better, which is a nice change. As a parent the adjustment has been hard. To go from total germ control and total care and now to send her to a place where I'm not there and kids eat their boogers gives me really bad vibes. But her teacher is awesome and is trying to follow all of the hand-washing and crowd avoidance protocols. Ironically, Erin and I have been really sick with a cold. Amanda's stayed healthy. She may fair better than expected. Regardless, seeing her so happy is making the risk worth it. She's finally where she wants to be.