Biopsy Results`

The amazing harmonica duo:
Sarah and Caleb
(after a harmonica teacher
came to the house to
teach the kids)
 Hi everyone,


Sorry it's been a while since we updated.  I try not to bother you all unless we've got news to share, and, well, we haven't had any news.  For the purposes of this blog, if you haven't heard from us, just figure that no news is good news.


For those of you who didn't get the Facebook update, I should let you know that Ethan's recovery from the biopsy went pretty well.  He had some pain and discomfort Wednesday afternoon and night, while the chest tube was in, but the morphine did what it was supposed to do and allowed him to get some rest.  They took a chest x-ray the next morning and pulled the chest tube out about 9 a.m.  Ethan perked up immediately after the pulled the chest tube out, and five minutes later we were out of bed and walking around the ward.  Ethan had his ERT infusion inpatient that day, and we went home right after that.


We just received the biopsy results last Thursday when we were in for Ethan's infusion.  Dr. McMillan, the clinic doc this week, said the biopsy results don't show evidence of any type of infection.  The biopsy showed that the granuloma was the result of thromboemboli (or pulmonary thrombo embolisms), which, the doctor says, is a generally benign clot or clots possibly caused by his central line. McMillan went out of her way to say that these types of embolisms are generally not the type that can break off and kill the patient.  But why, and what the difference is, I can't say.)

Dr. McMillan characterized this as a positive result that most likely indicated that the granuloma were not the result of either bacterial or fungal infections.  She said that given this result it was possible that Ethan might start his chemo before completing the full four week vFend course, but that it would be up to Ethan's primary transplant doc, Dr. Lund. 

Dr. Lund reviewed the results and confirmed that the granuloma do not appear to be infections.  However, he's ordered a follow up CT scan for early next week to confirm that there hasn't been any growth in the granuloma.

If the CT scan doesn't show any growth, then they'll draw some additional labs to ensure Ethan hasn't picked up any viruses in the last few weeks.  Then we'll do another "exit interview" to review Ethan's condition and the transplant protocol before we start.  If the CT scan's okay, I'm guessing that Ethan could start chemotherapy as early as the end of this week, but more likely some point next week.

Ethan digging his new hat.
In the meantime, this has been fairly easy time for us.  Caleb is enjoying school and both boys are enjoying playing around the house.  Sarah and I just had Caleb's regular parent-teacher conference here at the house's charter school.  The teachers say he is doing really well both in meeting and exceeding the Oregon academic goals and standards and in interacting with the other kids in the class (who range from age 8-14).  

Sarah and I have both noticed that Caleb is learning lots.  Last week he read a book to Sarah, which is a huge milestone!  And his numbers are getting better, too.  Caleb has also told me that he likes this school a lot because it's challenging.

Ethan is doing really well, too.  He's energetic and active, and he's learning how to do and say new things.  When I look at him, he's doing so well that I wonder what in the hell we're doing here.  It's really hard to believe that he's got a serious degenerative disease, and that even with all the progress he's making how, he'll lose it all if we don't move forward with this.

We may even have solved the problem we've been having with Ethan's dressing.  After talking with a number of other families, we think he's developed sensitivities to the dressing and skin preparation agents we'd been using.   We moved him from alcohol preps and cleaners to iodine cleaners and to a hypoallergenic dressing.  Unfortunately, scratching his dressing had become habitual for him.  But we've finally focused in on the vest that Grandma Lilianne made from him as the best option to keep his hands out of that area.  I think he'll probably be in that vest for at least a couple of months, and we've asked Lilianne for a couple more.  So far, I think we're on day 5 for the current line dressing, which is the longest we've gone since early December.  None of us like dressing changes, so we're all really happy and hopeful!

Ethan's only real problem at the moment is that he's having a really hard time sleeping.  It often takes him two - three hours to get to sleep, and then he usually wakes up in the middle of the night.  We think the Corteff, which is a steroid that was prescribed to stimulate his adrenal response, is screwing with his sleep.  He's going to have enough other things screwing with his sleep once he starts transplant, so we'd really like to figure this one out soon.

But for today, the big decision is do we try to go sledding or just hang out and watch Scooby-Doo movies and play with Ethan's new Cozy Coupe car and the new laser pistol Caleb won at Bingo Thursday.  A fairly normal Sunday for the Waddell/Aaserude clan, and we plan to enjoy them while we've got them...to savor each other's company in these quiet times in anticipation of the more stressful days to come.  Many thanks,again, to all those who have sent posters and care packages..warm hats and chocolate pretzels, games and toys, Utz potato chips and books galore, posters with tropical birds, fanciful animals, cars, and trains.  We are truly blessed to be surrounded by such a warm blanket of well wishes and positive thoughts and prayers.

Comments

Teresa said…
So so so pleased that the biopsy results weren't anything more sinister.
It sounds like you are thoroughly enjoying the calm before the ensuing stormy weather and because you already know what it involves makes it even more special that you have this extra 'quiet' time together as a family.
Drugs can be marvellous but an annoying requirement and Ethan seems to have had his fair share of sleep disturbing drugs already, I find that giving CJ's steroid earlier in the evening can help with settling him at 'normal' bedtime. Tonight we gave it late and we had trouble settling him.
What did you end up doing today? I would have gone sledding! Lots of love and hugs, Teresa, Shane and Corey x
Cheryl Garris said…
I say there is miracle in prayer! So glad the biopsy came back with good news. I will keep praying that Ethans body tolerates everything so much better for you guys this times since it has been through it before. We can hope that it will make things smooth sailing for all of you.

That is awesome that Caleb is reading books to you. I am so proud of him. He is such a smart little guy.

You are all in my thoughts and prayers.

Hugs,
Cheryl
Y said…
I'm so glad to hear that the biopsy results came back benign! Also, happy to hear that Caleb likes the school, he must be the best older brother in the world! Will Ethan still be on the same steroids as he is going through transplant? Maybe they can be given earlier in the evening like Teresa already said, or maybe Ethan is just enjoying a good conversation before falling asleep? Still praying that everything from now on goes smoothly :)
Thinking of you guys. Prayers and hugs.