Out Of Surgery, Plus A Photo Of The Tumor

Ok,

We've been waiting for today's surgery for a long time. The surgeon got a really good look inside Jack, and in addition to removing the tumor, everything looked clean, which is very encouraging. 

Neuroblastoma related rumors often start around the adrenal gland, and his looked clean. There were no infected or out of place lymph nodes either. 

Jack has three very small incisions on his navel line, and then a bit longer one just below his "bikini line".  (An inch, inch and a half maybe.)

If he pees tonight and today, the surgeon felt comfortable with maybe even releasing him tomorrow which would be great. 

And, here is a photo of the tumor being extracted:

The black stuff is from cauterization. The tool they use has a saw to cut and uses ultrasonic vibration to cauterize. 

Jack is napping now, which should help with his pain. Here's hoping he comes home tomorrow, though as far as hospital stays, one won't find a much better place than Children's. 

Next steps:

- Finishing up the chemo protocol with one more cycle of chemo. (He had the same chemicals in cycle 3, and they were hard, but we'll get through it, and know what to expect.)

- starting the autologous stem cell transplant, during which he'll be hospitalized for at least a month, at UNMC. 

I have a lot to be grateful today, but here are the two I'm most grateful for:

- a successful surgery,

- Jack's insides looking clean.

Hardware

We talk a lot about Jack's central line and port and the maintenance that goes along with his fancy hardware.

Central Line: this guy (photo on the left) is connect directly into his jugular vein. The dressing is changed once a week and the area is scrubbed with an antiseptic soap to keep it super clean. The soap stings, and the process is quite unpleasant for Jack. I'm not sure if it stings *that* bad, but I don't question his emotions. 

The white circle thing is a slow release antibiotic, to keep the cut in the skin clean. 

Sarah flushes the two access lines (blue and red) with a solution called Heparin every night. They both wear masks and gloves, and the blue and red caps are sterilized using alcohol wipes before flushing. Heparin stays in the lines and prevents them from closing up. When Jack has labs drawn (twice a week), they are able to just connect the syringe to one of the lines to draw the blood. No more finger pokes! 

Since the dressing can't get wet, Jack can't have any baths, only showers. We put on an aqua guard (a sheet of plastic with sticky tape around edges) or sometimes we use press and seal Saran Wrap (which works better) to keep the dressing dry. 
The central line is fairly new, it was installed when he had his white cells harvested at UNMC. When we're in the hospital, he receives all his fluids, meds and chemo through this line. 

Obviously, cleanliness is the name of the game here... daily flushes, weekly changes, no getting wet, local antibiotic...

Power Port: (pictured on the right) This was put in right when he was first diagnosed and is also connected to a major blood vessel. It's accessed using a needle, and then a dressing is put on to keep the needle in place. Before we would leave for the clinic/hospital, Sarah would apply some numbing cream to help so it wouldn't hurt when it was accessed. Once connected, he would receive all his meds, fluids and chemo though the port. This access method required less maintenance, as once we would leave the hospital, the needle was taken out and he would be good to go. Jack could take baths and even go swimming if he wanted. 

Since the central line was installed, his port is unused and is only accessed once a month to get flushed to keep it from clogging up. 

In essence, both of these access lines do the same thing. One is just bigger, allowing for faster cell harvest and transplant, while the other one requires significantly less at home maintenance (but accessing it required a poke, which too was quite upsetting for Jack.) 

"I'm not getting dressed and just going to wear my PJs all day"

As I looked outside this morning to see the white fluffy snow (yes, I love snow) I was thinking how fast winter came and where did fall go? Fall is our favorite season and I really don't remember the trees changing or the evenings getting cooler. About that same time, Jack (we also call him Buggy) with his big blue eyes and bald head ran to the window to join me to see the snow. Time has certainly flown by and sometimes stood still since the beginning of September. At the same time,  Jack declared he was not getting dressed and planed to stay in his comfy PJs for the rest of the day. Fine by me. I am a firm believer in picking your battles with kiddos - and wearing jammies on a Sunday is the least of my worries.

Our weekend was busy doing house work. We've been slacking off a bit on the "to do list" and it was starting to get out of control. It was actually nice, we kept our minds and bodies busy and the boys played video games. Minecraft is still hot as ever around here, and when Chase's friends join in, excitement flares. When Chase has FaceTime active chatting with friends, you would think his room is filled with kids with all the chatter going on. Hey, if they're happy, so am I.

Bosnia qualified for the World Cup and this weekend they announced groups which was pretty exciting.  If you didn't know, we're not really football fans. I know, I know, Huskers and all doesn't really get us excited but World Cup games coming up next summer is all the talk around here.
(United States is in a very tough group with Germany and Portugal, and with a lot of travel involved.)

I'm graftul for:
- Amazon and Target online. Thank you for helping me get 80% of my Christmas shopping done.
- Snow- white fluff is way better to look at than 200 shades of brown, right! :)
- A low key and productive weekend. Oh and The Little Mermaid is on tonight too on Disney.

Done With Scans, For The Time Being

We went today to do the MIBG scans at UNMC which went well. We haven't received any results, but at least we don't have to go back tomorrow, as they took great pics. 

We learned a lot about the nuclear medicine there, well not a lot, but more than we knew before. 

For example, the machine (camera, as they call it) they used is only 6 years old, and they have five of them at the research center. 

They get their radioactive medicines from a distributor in Omaha, who have their own centrifuge where they can concoct some of the needed medicines. 

Here is Jack waiting for the camera to do its thing:

Unless we hear the results of these scans, and we may not, the next thing on our agenda is surgery at noon on Wednesday. 

CT Scan News

Today we were at Children’s for a CT scan to determine how the cancer is reacting to the chemotherapy. I received a call from the surgeon this afternoon with good news. He’s very happy with the amount of shrinkage and has scheduled surgery for next Wednesday. The plan is laparoscopic surgery, which is a 1-2 day stay, but if larger incisions are needed, it will be a 3-4 day stay. 

The two major masses - one wrapped around his aorta in his abdomen area, was 7-8 cm and now it’s
1 cm and is not longer attached. (They are especially happy with this one, aorta being a major blood vessel they prefer to keep lasers away.) 
The other mass that is by his pelvis/rectum was 10 cm and now is 5 cm. He had other small masses in his abdominal area that are almost 100% shrunk. We’ll have more details after the MIBG scans on Thursday and Friday.

For the MIBG scans they inject a radioactive substance through his central line and the compound attaches to any neuroblastoma tumor cells. When they do the scans, the cells/tumors light up. 
They will scan his whole body, making sure no cells have snuck out of the abdomenal area. 
I remember very well the glowing blobs on the screen the first time around and the tech not being able to tell me anything. (Not because he was being mean, but he’s not a radiologist and can’t officially read the scans) It’s was pretty hard sitting there watching. 

Schedule for the next few days: 
Wednesday: UMNC to get radioactive drug injected
Thursday: Scans
Friday: More scans if necessary.

Grateful for: 

- Seems like a no brainer - great news from surgeon.
- Jack being a super star through all this - I mean all the waiting around we do and he barely complains. 
- For all the prayers and thoughts from everyone. Thank you!

Oh and one more note that will make you chuckle - Jack plans asking the doctor if he can keep his tumors in a baggie and store them in the freezer for ever and ever. Hummm…

Scans Scheduled For This Week

It's been a long day for Sarah and Jack. 

They were in Omaha this morning at 9:30 and started the lab work (checking blood counts.)

His white counts were fine, but platelets and hemoglobin were low, so he got transfusions of those two. 

They were two separate transfusions, each one taking a few hours. Looks like they are about done and will head home soon. 

Doctors are ready to start scanning him this week, tomorrow they will start with a CT scan, and Wednesday and Thursday will be MIBG scans.

 http://www.insideradiology.com.au/pages/view.php?T_id=13#.Up0Sg7K9KK0

Part of Jack's treatment is for doctors to determine if MIBG scans are useful for diagnosing and treating his type of cancer. 

The results will likely go straight to doctors for their interpretation, and they may discuss them with us this week, otherwise I suspect next week. A lot of different eyes will look at them to make sure they're all in agreement on the findings and course of the treatment. 

If everything is as they expect, next step will be a surgery. Maybe next week, but we really don't know. 

Today I'm grateful for:

- fever was gone this morning,

- they had his blood type, so less chance of an adverse reaction,

- calm weather.

Off To Children's With A Fever

Well, it was a very nice, low key, long weekend until this afternoon. 

Jack got a fever of around 101 and is in process of getting transported to Children's. 

He is currently with Sarah at St. Elizabeth's in Lincoln, getting a blood lab, chest X-rays, a nose swab, and urine sample. My guess is that doctors are trying to identify whether he has a bug of some sort, or if the fever is caused by low blood counts. 

It's not unusual to get fevers during his type of a treatment, so all we can do is follow doctors' orders and wait it out. 

So, that's where things stand currently, I'll post more details as I get them. 

In addition to all the standard things to be grateful during thanksgiving (friends and family (oh, and football, right!)), I'm also grateful for:

- tomorrow being Monday, and all the docs will be back at work, and transfusion center will be operational if needed. It would have sucked if he got a fever on Thanksgiving day. 

- the couple of sores in his mouth have healed. He was eating normal today, and was drinking OJ like it was going out of style. (We had to keep OJ away for a couple of days because of its acidity.)

- Sarah's mom coming to Lincoln and helping us take some nice family photos. 

UPDATE: OK, looks like he's not going to Children's after all. He is not showing any flu type symptoms, and his counts are not too terribly low, so they're letting him come home tonight, and we are just to watch him. I think the other tests came back clean too. 

Here is a pic of him waiting for the andibiotic drip to complete, and then they're getting discharged: