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.

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!!

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.

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!

Another hospital trip...

Well we had another trip to the hospital. But, thankfully, we are back home now.

Last friday I woke up at 7:15 a.m. to his heart rate being elevated and setting off the oximeter alarm. I thought he might be in pain so I went and gave him pain medicine. I repositioned him and I could immediately tell he had a fever, he was burning up. I took his temperature and it was 102.0! We are supposed to get him in within and hour of the temperature reaching 101.5 to get antibiotics and I had no idea how long he had this temp. He was also bright red and taking very shallow breaths.
I called the on-call nurse practitioner and she told us to go in immediately if I felt comfortable driving myself, otherwise call 911.

I made a few phone calls and his Aunt/nurse, Maya, was able to go with us. I got ready as quickly as possible and we rushed out the door. Traffic was bad but we eventually got to the ER. The nurses moved quickly when they realized that Nick was having difficulty breathing, he was retracting in his neck area. They gave him oxygen and within 15 minutes he was doing much better, just with the oxygen. His oxygen saturation never went down, which is odd, but just a little oxygen helped him a ton. They also took blood cultures, catheterized him for a urine sample and gave him a broad spectrum antibiotic.

They took a chest x-ray and compared it to the one he had about 5 days earlier and noticed some changes and decided it looked like he might be getting a little pneumonia but the antibiotic they gave him would help take care of that. But he was still working to breath so they decided to admit him.

Nick slept. He pretty much slept for the next two days.

They continued the antibiotics and we waited to see if the blood cultures grew anything.
The next day he was doing fine! It was so strange. He was still retracting a little and he still has the stridor but he really was doing so much better. But they couldn't release us until the blood cultures came back.
They came back the next day and they were negative but his urine grew pseudomonas and a strep.

So we got to go home Sunday on two antibiotics.

Nick is doing good, he is acting like himself again, well like himself on chemo. He is still very weak and is not able to hold onto his toys and play like he normally is able to.

He just seems so frail and every day it seems like he is dealing with something new. It breaks my heart to watch him fight so many different obstacles. The best I can do is hold his hand to help him through everything and pray that God will heal his little body.

Thank you so much for the kind words and for the prayers. Please continue to pray for little Nick, he is only halfway through chemotherapy and still has a lot of fighting to do.

Trying to get him to smile....

Got it!! 

Sweet face boy!

Stridor

Well there always seems to be something happening with Nick, medically speaking that is. A week and a half ago he was diagnosed with C. Diff. For those that do not know what that is, it is one of the worst things you can 'catch', in my opinion. It is terrible diarrhea that can cause severe stomach pain and cramping. It is highly infectious because the only thing that kills it is sodium hypochlorite, or bleach, at least that is what I have been told. Alcohol does not kill it and as many nurses and doctors preferred method of 'washing their hands' is using hand sanitizer, you can quickly figure out why its running rampant through hospitals and long term care facilities.

Terrible. Just wash your hands people.

Anyways, so he just finished his round of Flagyl, an antibiotic, to get rid of it. But the flagyl has many side effects as well so Nick has had bad stomach pain from that and it was causing him to throw up sometimes as well. So glad that part is over. Then almost as soon as he was done with the antibiotics he started getting stridor, which is a high pitched wheezing sound when breathing. This usually comes along with a cold, the croup or asthma but Nick had none of those, so we brought him to the ER. They gave him a breathing treatment and other steroids but they didn't seem to help at all so they knew something else was going on. They put a scope down his nose to look at his upper airway and see if they could figure out what was causing it. They took neck and chest X-rays. The resident though he saw some narrowing in Nick's airway right below his vocal cords. So they decided they needed to put him under anesthesia to figure out why he has narrowing there. As the surgeon described what they had to do he mentioned the word tracheostomy.

Oh no, not that. Please, Lord don't let him need a trach, I prayed.

So they did the scope and determined there was not any narrowing in his airway but his epiglottis was very floppy and he had two ligaments that were really tight so the surgeon cut those hoping it would help with the floppiness and the stridor. Yay, no trach for now at least! But he wasn't sure why all of a sudden his airway was becoming floppy or losing tone. But ever since a short while after Nick started chemo his tone in his legs and hands and arms started to change, he was more floppy.

Bingo! That was it, his airway must be losing tone like the rest of his body. But why was he losing tone? Hopefully, he has not had some type of neurological change.

Obviously, Nick was admitted and they consulted with neurology. We had never seen this neurologist before but he seemed extremely intelligent and he felt that Nick's decrease in tone was due to all the medicines he's on now, especially the chemotherapy drugs. And that the change in his tone would go away once the medicines are stopped and there were not any neurological changes.

Then the neurologist started putting Nick's symptoms and characteristics together and asked us if anyone ever tested Nick for any abnormalities on chromosome 11 the short arm. I told him I didn't think so. He explained that with Nick having Wilms' tumors now that the possibility of him having a deletion there or an abnormality was greatly increased and he would be surprised if that wasn't the case for Nick.

Really? Another different genetic diagnosis? I am just starting to get used to the last one! Well either way I felt that we should figure out if he's been tested for it before and if not that we would go ahead and test him for it. There were two specific syndromes that he mentioned but he had a really thick French accent so it was a little hard to understand which ones he mentioned.

So we'll meet with the genetics doctors again and see what they come up with.

Nick still has the stridor and they are not hugely concerned about it and they don't think it's going to get worse but if Nick gets any type of cold or congestion then he could have a really hard time breathing with all of the secretions. If it became severe enough he would need to be intubated. So we are really going to have to watch him and hopefully we can get his insurance to cover an oxygen saturation machine so we can monitor him at home better.

But (there's always a but) his blood levels are low, especially his hemoglobin. It was 7.2 yesterday so they did  a blood transfusion today. And they want to keep an eye on him again tonight to make sure his breathing does not get worse, then we should be able to go home tomorrow. Transfusions scare me so I'm glad they are keeping him overnight, just in case he has a reaction.

This was a little after the transfusion, his color is already perking up and he seems to feel much better!

Thank you for the prayers and thoughts. Please continue to pray for Nick, that he doesn't have a reaction to the transfusion and that he will stay well and not get sick.

Good news?

Well Nick's oncologist called me right as we were leaving from the CT. His tumors have shrunk 50%! Praise the Lord!
But the surgeon does not feel as if he can resect the left one and leave enough good kidney tissue behind. So the plan right now is to do 6 more weeks of the same chemo medicines then do another CT.

Here's a picture of before and after:

As always, thank you for the continued prayers, they are still very much needed!