Wednesday, August 15, 2012

Round Four of Five

I believe an update is in order. We are currently in the hospital (surprised?), but this is planned. We started chemo last night, round 4 of 5 of the standard high risk protocol. If all goes well without any complications (could life be so good?) then we will go home Friday. That seems so amazingly short and wonderful!

We were supposed to start chemo Monday, but we felt like we needed a CT scan before proceeding because we had some cause for worry.  With neuroblastoma a hormone can be measured in the urine, so in essence the increase or decrease of cancer cells can be measured through the increase or decrease of this hormone in his urine. Without going into more medical detail, we will call them "urine catecholamines." 

We have been testing every week and the last two weeks showed an increase...which led to me freaking out! The hormone levels can sometimes be affected by eating bananas, chocolate, vanilla, and by some medication. Case does eat bananas in smoothies I make, and his IV nutrition and his blood pressure medication (because he is an old man) have both been known to raise these levels. But we wanted to make sure.

So into the scanner he went! And we got "good" results. I put that in quotation marks because we would have preferred better, but we will take it! One spot showed a significant decrease, while the rest remained the same size. I have to remind myself of two things:
1. Thank heavens they are not BIGGER!
2. This is a scan we did three weeks after the previous scan. No one in the oncology world scans that often or expects to really see a marked difference in shrinkage in such a short time.

So I am trying to remain calm and take deep breaths.  Trying, trying.

Last week on Thursday we went home...glorious home!  We had such a fantastic time at home. Graydon has really been feeling the stress and separation lately, so it was a necessary break.  We got a trampoline in the backyard and have loved it! Case has started eating and walking around a lot. Remember his super skinny thigh in the car seat picture two weeks ago? Well, I can't help but feel them all day because they are gaining some more chunk. Hooray!

He has continued to be on antibiotics for the crazy Basillus Cerious bug that he got. I know I shared on Facebook but not here, that if this bug goes untreated it acts like Anthrax or meningitis. Seriously? Will life ever be normal? Nope. 

So at home Case is hooked up to IVs for 18 hours a day: antibiotic, nutrition, and lipids. X and I feel like we should be given nursing licenses because we have to hook everything up. We need to video us doing it, because it takes at least 45 minutes each time and it is intense. It's worth being at home though.

As thing stand right now and if they continue to be good, we will have one more round of standard high risk chemo in three weeks, followed by some crazy chaotic chemo that will permanently destroy his bone marrow and WILL require a stem cell transplant. I am dreading that because of the length of the hospital stay (they say to plan on 6 weeks) and for the risk of infection, as well as the strict seclusion to keep germs out. Mentally that will be tough!

Then we will do some kind of radiation, which is nasty, and some follow-up therapy that is a little undefined right now. Either way, we are looking at AT LEAST ONE MORE YEAR OF TREATMENT, and that's the good scenario. Trying to take deep breaths!

Next week we will be meeting with Dr Granger again from Cook Children's in Ft Worth to talk about some drugs that are not yet approved, but are still in phase testing. Scary, but exciting at the same time, as these drugs target a bit more of what Case is dealing with.

And as I have said before, there you have it!


  1. Thank you for the thorough update! I know it is a daunting task to keep up with this blog but it helps so much for soooo many who are wondering and worrying every single second about sweet little Case. I appreciate the specifics as well so we can be specific in our prayers. We love that little man!! So grateful that the scans showed shrinkage so you could move forward. So happy to hear about chunkage in those thighs AND that you got a trampoline! Hopefully that brings many smiles and giggles to your family. Sending love and hugs always.... the Spanglers

  2. Emily and X, My heart is just so full of love for your sweet family. As Heidi said above, thank you so much for the update and all the sweet photos that you post. To see Case's smiles as well as yours just makes me smile. I'm so happy to hear the good news and will pray even harder for those things that you are worried about. We love you tons. The Edwards

  3. Oh Emily, I agree with the other notes. I always appreciate any updates. I am so grateful that things are looking up (even if it is so incredibly daunting at this point). I'm also grateful that you guys had a short time at home and that there are a few things bringing you some smiles. I LOVE seeing the pics of Case smiling! I am constantly praying for your sweet family and hope that you continue to get more and more good news! HUGS!