Thursday, June 28, 2012

Sorry, late update... Nick's surgery was successful. Praise the Lord! So we're now waiting for the pathology report to come back so we know what are next step in this journey will be. Nick was in a lot of pain right after the surgery but he had a pain pump and we got it under control easily but it depresses his breathing so he needs oxygen. The surgeon said since he had to move Nick's small intestines completely out of his body during surgery it has caused his bowels to stop working. So hopefully by not feeding him they will wake back up soon. So we tried clear liquids yesterday but his stomach started to get distended, so we stopped clears too. We're hoping that today he will be able to start clears again today, but we have to wait for the surgeon to come by to see him. So at this point we are just waiting, please pray the results come back today. Nicks oncologist is not here tomorrow and his will be doing rounds all next week so it may be hard to get it to see him and apparently we can only get the results from him.

Tuesday, June 26, 2012

Surgery today

We are in the surgery waiting area waiting for an update from the surgeon. Nick went back at about 7:30 a.m.

We were able to meet with the surgeon yesterday at his pre-admission testing appointment. He seems like a good doctor and he's dealt with bilateral Wilms tumors before. But he said that Nicks case was the worst he had ever seen.

Nicks tumors are shrinking towards his blood vessels, or the tree trunk of the kidney.

More bad news, they are inoperable.

The best hope we have now is that chemotherapy and radiation will shrink them away completely.
This surgery is a big deal. It's going to determine a lot. It will also make Nick's staging change. He will now be at stage 4 instead of 5. It sounds better but when you look at the staging it's actually worse.

I will update as soon as he's out of recovery I get a chance. Please pray!!

Thursday, June 14, 2012

CT results

We got the results of the CT today.

It's not the best news, it's not terrible but not what we hoped for.

The right one has shrunk a few centimeters, and the left one, which was the larger one, has shrunk from 4.5 inches to 3.8 inches.

But the bad part is they are shrinking towards his blood vessels, making them inoperable right now. So he'll need an open biopsy to determine if we're using the right chemotherapy drugs for his type of cancer.

Also, the doctor that our oncologist originally consulted with is going to be out of town next week and is unable to meet with us or do the biopsy until the June 26th. I don't know if I feel comfortable waiting until then. It's standard protocol to do either surgery or a biopsy during week 13 and June 26th will be week 14. I don't know if thats a huge deal...I just hate to wait and put stuff off till later when dealing with Nick's tumors. I would hate for him to be getting the wrong chemo drugs.

The wonderful director of the Britain Center that Nick goes to is friends with an oncologist at Children's and she gave us the name of another surgeon that has dealt with Wilms' tumors so we're trying to decide if its a good idea to consult him or just wait until our original doctor is available.

We're praying for wisdom, we just want whats best for Nick. Please pray with us.

We have chemo again tomorrow and we really need to decide by then if we want to check this other doctors schedule and see if he is available to do the biopsy or just prayerfully wait things out.

Monday, June 11, 2012

Another Big CT

Tomorrow is the next big CT. This will determine what type of surgery Nick will have, either a biopsy or resection of the tumors from his kidneys. Hopefully, prayerfully, the tumors will have shrunk enough so the surgeon will feel confident enough to do surgery and leave plenty of good kidney tissue behind.

We have to be there at noon, the CT is scheduled for 2 p.m.

We also started a new medicine to help with the neuropathy we think Nick is having, it's called Neurontin. His neurologist thinks that the oxycodone and lorazepam Nick has been taking for pain and agitation are causing his lowered tone and breathing issues. So Nick's oncologist wants us to hopefully stop, or at least greatly decrease, the pain medicines. And so far it seems he seems to be doing great on it, but it probably needs to be increased right after he gets his weekly chemo meds. Surprisingly after week 11's chemo, which is all three drugs, Nick didn't vomit at all, not even once. His nutritionist told me about a study one hospital did on kids that were learning to eat after having a g-tube of some type and Neurontin seemed to help quite a few of them, especially with the gagging issues they were having.

I will update as soon as we know when surgery is scheduled. Please pray for whatever is best for Nick, which at this point is that they have shrunk enough to remove them completely!