Surgery went well

Surgery went well today. Jack is a little sore, but Tylenol seems to take the edge off the discomfort. We were home early afternoon and had a relaxing afternoon shooting up bad guys on the PS4.

We'll find out bone marrow results in the next day or two. I did ask about his first biopsy again and our doctor confirmed it came back negative. (Which is a good thing, negative for traces of cancer in the marrow.) We had a slight (yea.. not exactly how I would describe it) miscommunication during his last treatment, and was told by the ARPN (assistant nurse) that she thought the first biospy was positive. Which then I had a slight meltdown and called Tibor to pick his memory. Saying prayers for biopsy results to stay negative. 

Pics: Jack after surgery playing the Nintendo DS. He got keep his port and just one steri-strip showing where they removed it. 

We're thankful today for

- surgery going smoothly,

- good weather for driving to the hospital,

- Chase being very mature and carrying more than his own weight when we're busy with Jack,

- Jack being a trooper and continuing to make it easy on the hospital staff,

- Scooters coffee -- oh do I love their coffee! They have a location right by our house that makes it more than convenient to drive though to grab a coffee on our way out of town. 

All set for surgery tomorrow

This afternoon we ran a few errands and enjoyed the nice weather and fresh air. Grabbed a few of things at Sam's Club, stopped by the Lincoln Zoo and then off to the Children's Museum where we spent time running around and being silly. It was great! Tibor took the afternoon off to hang out with us, we had a good time together. 

For dinner, Jack wanted Raising Canes. The kid is in love, and I mean in LOVE with their chicken strips, fries and garlic toast. Oh and don't forget the lemonade. It has become our new dinner tradition when he goes in for treatment or surgery to go out and eat, his choice of course. They have a new  location coming soon on the north side - about 27th and Cornhusker. The kid is stoked! 

Tibor emailed the senators regarding our support for the LB764 bill today and we heard back from Danielle Conrad with a great response. Fingers crossed that she and the other senators have lots of emails with positive supports filling their inboxes. 

Hoping for a quick surgery tomorrow and back home in the late afternoon. He wants to keep his Power Port, I'm pretty sure the surgeon will let him hang onto that. What he plans to do with it, I didn't even ask. 

It should be a quick surgery to remove his port, which is not used very much, since they've installed the central line, and they'll get bone marrow samples throug a biopsy. In and out, we should be home tomorrow afternoon. 

Today I'm thankful for:

-having an awesome chat with my brother. He lives in Texas and looking forward to seeing him this summer,

- nice weather today,

- Tibor taking time off to hang with us -- I think he misses us sometimes during the day. 

Legislative Bill 764

A bill is being submitted to Nebraska's legislature, LB764, which proposes to allocate $1.8 million out of Nebraska's general fund to UNMC for pediatric cancer research. 

The bill would not raise any new taxes, but would dip slightly into the existing general fund, at the cost of one dollar per Nebraska resident. 

A few things to note about pediatric cancers... Children do not get cancers in as great numbers as adults do. (Kids are healthier, they get more exercise, they don't smoke and drink, etc.) 

As a result, pediatric cancers are not understood or researched as well as adult cancers. Drugs are not tested on children, so their side effects are not completely established and understood. 

The more research that can be done, the better our protocols for dealing with cancer will be. This will improve survivability, recovery and quality of life for our little ones. 

If you would like to voice your support for this bill, please email the following senators and request their support:

hmello@leg.ne.gov, jharms@leg.ne.gov, kbolz@leg.ne.gov, dconrad@leg.ne.gov, bkintner@leg.ne.gov, tlarson@leg.ne.gov, jnelson@leg.ne.gov, jnordquist@leg.ne.gov, jwightman@leg.ne.gov

The bill:

http://www.nebraskalegislature.gov/FloorDocs/Current/PDF/Intro/LB764.pdf

And, as a disclaimer, I don't expect this bill would have any effect on Jack's battle, this is something we need to do for future generations. 

Weekend Update

It was a quiet weekend around our house, a bit of traveling on Friday to see family followed by a relaxing day of movie watching back home on Sunday. Jack had labs on Friday- they came back good so no Neupogen shots for a while.

Surgery has been moved up to Thursday at 10AM. (no urgent reason, just a scheduling conflict)
We'll be there at 8AM with an EKG and Echocardiogram scheduled before surgery. These tests are not necessary for the surgery, but just done while we wait -- saves us a trip to Omaha. The purpose of repeating these tests again are so doctors can compare the heart damage, if any, before and after chemo treatment. I know there is an Audiogram test also, but that has to be done in a special sound proof room. I guess we'll see if time allows for that.

Dressing change today, nothing  exciting to report on that.

Jack and I watched a few episodes of Buying Alaska on the Discovery Channel. We've decided this would be an awesome family vacation maybe in the next few years. Drive time --56 hours and 6 minutes. Hummm... that seems like a very long time in the car with two boys.

Little dude is weighing in at 43 lbs. Hoping to gain a few extra pounds in the next few weeks. He's eating pretty good so far.

I'm grateful for:
- spending time with family this weekend.
- a no hassle dinner tonight. Roast, carrots and potatoes in the crockpot for dinner tonight -- the house smells heavenly! Fingers crossed it tastes as good as it smells.
- tomorrow is my day to go into work, Yay! I always look forward to getting out of the house and having adult conversations.

Biopsy Next Friday, Doing Good For Now

Our Jack is back, full of energy, his color is back and most importantly, he is happy, running around and laughing!

He got platelets on Monday and a unit of blood on Tuesday. He's off fluid, but the doc added 3 more Neupogen shots. Labs came back and his counts are still recovering. Slowly but surely they'll come up. 

The plan is for another surgery next Friday (this will be #5)  - another bone marrow biopsy and they are removing his port. The central line is staying put and he will have that throughout the rest of his treatment. Should be a quick one, in and out on the same day. 

Lots more appointments in the next few weeks, but I'm not thinking of those today - one day at a time.

We need to bulk Jack up a bit, he has lost a little weight, but nothing dramatic. What's on the menu -  lots of good fats, carbs and protein. He ate pretty good today - so we're moving in the right direction.

I'm thankful for:
- Jack's energy level is on its way back. Maybe a Nerf war in the next day or so.

- not living on the east coast, brrrrr.

- popcorn. One of our favorite snacks around here. I like white with just salt, Chase is a butter lover fan, Jack loves the carmel and Tibor is game for any flavor. We just discovered Just Pop'd Popcorn on the north side of town. We give it two thumbs up! 

Got A Little Infusion Today

Jack's temperature has been keeping at bay, so there were no trips to the ER. 

Sarah did take him to Saint Elizabeth's for a little infusion of platelets. Jack's appetite made a sudden and welcoming appearance this afternoon. While at the infusion center, he had a snack of graham crackers and apple juice, and upon returning home he ate a whole taco, a dozen tater tots, two glasses of water and a cookie. Hopefully tomorrow the doctor will give thumbs up to stop fluid.

Tomorrow morning, he's off to Children's for a checkup. In the coming days he'll have some more CT and MIBG scans and tests to establish baselines for his cardiovascular functions, and compare his hearing to pre-chemo levels.

Here is a little collage of us being goofy:

Today I'm grateful for:

- a long weekend,

- playing video games and watching funny vides with my boys,

- only two Neupogen shots left. Not that it's a big deal anymore, it just makes the bedtime routine longer. 

Weekend Update

Jack's counts have hit rock bottom, which means he has no energy, appetite is pretty much non existent and he's looking pretty pale. His temp has been like a roller coaster for the past two days. We made a call to the doctor last night at 11PM with a temp, and then as we were about it walk out, it had dropped. After calling the doctor back, she said no ER, just watch it closely through the night. (I was doing a happy dance -- I very much dislike doing to the ER)

Today the weather was gorgeous, but little dude declined a short motorcycle ride around the block, a Nerf gun battle and didn't even want to go outside. He was camped out on the couch, channel surfing in PJs all day. He's still on continuous fluids, so at least he's getting hydrated and will eat a few hundred calories a day. Tonight, Chase wanted Ego Waffles and Jack pipped in and was game for one too. Of course we were out, so I ran to the store and grabbed a box. He ate a waffle. Yay!

We have labs and a dressing change tomorrow. I'm pretty sure they will schedule a blood transfusion for Tuesday. After a blood transfusion, it's pretty amazing how quick (within 24 hours) he will start to get color back in his checks, will have more energy and his appetite will start to come back. It's like a whole new Jack. He's a lot more agreeable too.

Today I'm grateful for:
- AWESOME January weather.
- no trips to ER this weekend.
- my sis and Jason watching the kids for a few hours so Tibor and I could sneak away for a few hours.

Everything Stayed Down Today.

Day is not over yet, but we've had first 24 hours without vomiting today (since getting released from the hospital.) Hopefully that trend will continue over the next few days, and we can get Jack back on a higher calorie diet. 

Today was all about small portions and fun foods. Cereal, gogurt, ice cream and goldfish crackers. He even had a BM, after which he declared "Now, that feels good."

The chemicals used in this round of chemo can have serious side effects, so the hospital outfitted us with a pump and a few liters of IV fluids to make sure everything gets flushed out of his system. This makes him get up at night a couple of times, but luckily he goes right back to sleep. 

He had a blood lab done today, his counts are going down, so we're on a fever watch for the next couple of weeks. 

Otherwise, it's "steady as she goes". 

Follow Up Appointment

Jack and I spent the better part of our day at Children's in the Infusion Center getting more tummy meds and hydration. Our pharmacy didn't have two of the meds in stock, so they're ordered and we had today's dose in the Infusion Center.

Jack has an appetite, but nothing stays down. It doesn't matter how bland, sweet or fried the food is, it comes back up 2-4 hours later. Last night Jack was hungry at 11:00 PM, so after throwing up already twice, we weren't sure what to give him that might have a chance at staying down. He wanted some grapes and peanut butter. (sounds like a weird combo, but it's really tasty.) Tibor and I were chatting this morning how happy we were that Jack didn't make a mad dash to the bathroom last night. On the way to Omaha, lets just say thank goodness I have a few of those blue bags tucked away by his seat for emergencies. It was the same for the ride home too. Poor little dude.
He's on fluid 24/hrs now until his tummy calms down and he can keep food down. We'll check in with the doctor daily to let them know how's he doing. I'm hoping in a few days, we'll get over this hump.

What's going on in our house tonight:

Tibor has discovered the BEIN channel - soccer all day, every day. Soccer or Cartoon Network, my vote is neither, I'd rather tweeze out every eyebrow hair I have than watch either.
Chase came home, did his homework and then is on the computer playing games with friends from school. He pops his head out a precisely 6:00 PM stating that he is famished and he can't possibly wait another minute for dinner. When I ask for help, he makes a mad dash back to his computer.
So.... tonight I may take longer cooking dinner than normal.
Jack is my multi tasker, he has no troubles playing on his iPad, watching an episode of Good Luck Charlie, ears tuned in to any conversations going on around him and eating a snack. If a cat is near by, he'll give them a little pet with his toes. He usually has a Nerf gun in reaching distance incase of Chase coming by and causing him trouble.
Me, I'm sending out our Happy New Year and some Thank You cards. A bit late, but they're going out by tomorrow. House is a bit of a mess, but it will have to wait until tomorrow, I'm tired.

There you have it, a day with the Moldovan family, intriguing huh? Ha! :)

Having A Hard Time Keeping Food Down

Things are going OK, Jack gets hungry and eats, but shortly afterwards everything comes back up. 

He doesn't really have nausea, his stomach just can't handle much. 

Small, high calorie meals work the best, but he gets pretty hungry and wants to eat some more. 

He is eating grapes and peanut butter now, hopefully that will stay down overnight. 

We're used to the whole song and dance by now, so no one is too stressed out. In a few days at most, the vomiting should stop. 

His blood counts are still fine, so he still has lots of energy and is pretty active. In a couple of days, his levels will start dropping, and that's when he'll start getting tired and will need more rest, and more high calorie foods. 

But, things are going well, all things considered.

Back Home

After a long morning of waiting for the doctor to make her rounds, we got the thumbs up and were on the road by 1:30 headed home. One pitstop before we hit I80 -- McDonalds. Jack wanted sliced apples and french fries. The fries were fresh, piping hot and perfectly salted. He declared them the best french fries ever made.

It's good to be home! Jack is happy to see all 5 fish are still swimming around and gave his cat a "Hi fluffy, you miss me?" in a high, funny voice. We start Neupogen shots tonight before bed and he's already asked if we can call the doctor and ask if we can start tomorrow. Other than that, all is well. Stocked up on meds for a gurgly tummy and maintenance fluids for a few days. The fluids run 12 hours during the day, so no getting up in the middle of the night. 

We have a follow up appointment on Tuesday and will start to talk/schedule more CT and MIBG scans, a surgery where they'll do another bone marrow biopsy, take out his port and do something fancy with his central line in preparation for the big transplant at UNMC early next month. 

Today I'm thankful for:

- going home! 

- coming home to a clean house - thank you Tibor and Chase!

- the forecast for Sunday - 52. 

Day 4 or I think ... I'm starting to lose track of my days

Room 612 has not been a fun and exciting room for the past few days. On Thursday morning, the side effects of chemo made a "Hello I'm here and sorry I'm late" visit. Not the ideal visitor I was hoping for. Jack was in bed all day yesterday hugging the yellow bucket. Doctor added another anti nausea med to his list, this was number six to get his gurgly tummy under control. Finally at 6:00 last night, right as they were starting chemo (6:00 PM is what time we start this go around) he decided to get up and walk around the room a bit. Gradually he started feeling a bit better, so we went to the toy room to play Ants in My Pants and a few rounds of Mario Kart. Later in the evening he was a brave kid and  declared he was going to try and eat something. Hot dog, Cheetos and apple juice to drink. He ate about half, which I was pretty excited.

The night was long like every night here, I'm up every 90 minutes whispering in his ear "it's time to go the bathroom." At 6:00AM, instead of the soft strumming of my iPhone alarm, it was "mom, grab the bucket." Not a good start to the morning. He's been laying around today, declared he's not tired as he is dozing in and out. (This is one of those arguments I don't even touch. I nod and smile.) 

We took a walk this afternoon and meet a little girl down the hall from us. She's the same age as Jack and had/has brain cancer. She's celebrating her last 'scheduled' chemo treatment and was talking about her trip to Disneyland in April. She's the sweetest thing ever.

Tonight, we went downstairs for movie night - How to Train Your Dragon is playing and then we meet LaMya, (the little girl we met earlier) in the atrium to fly some remote control helicopters. He had soooo much fun, It was heartwarming to see Jack smile and giggle again.

I ordered him some dinner tonight, a little of this and that, hoping he'll pick at it and eat a few bites.
He declined the smorgasbord. (even the ice cream) Maybe later on tonight he'll want a little snack, even a midnight snack is fine by me. Ice cream-- sure thing! :)

Home Healthcare came in this morning and trained me how to hook up the maintenance fluid for a few days when we get home. It's really important that he's at least drinking a liter a day to make sure the chemo is flushed out of his body. Last time around when he went home, he didn't do so hot, so this is hoping to prevent dehydration and a trip in the Infusion center for fluids.

Other than that, nothing to exciting to report. No visitors, he's just not up to seeing anyone this time around. (it's one of the harder treatments) 

(Left Pic: Down stairs in the Atrium today, he likes to throw pennies in the fountain.
Top right: Jack and LaMya chatting and flying the helicopter.
Bottom right: Jack playing Minecraft on his iPad)

Today I'm thankful for:

- last chemo treatment! Yay! Way to go champ!

- looking forward to going home and seeing Chase and Tibor.

- so proud of Chase getting accepted into the IB program at Lincoln High. Congrats! 

- the hugs, smiles, warm wishes and silent prayers we have received from all our family, friends and kind strangers. 

Tolerating Chemo Surprisingly Well

Today was a surprisingly good chemo day. 

Jack wasn't nauseous at all, or didn't seem to be, and he even ate a bit. 

He slept in until 10, had Nutella for "brunch", some Kid's Cuisine later on, and diced pears. So, overall, things went well today. 

Chase and I visited after work, and three of us spent the whole time playing Minecraft. Jack was happy to do that, and Sarah got a little break too.

Today, I'm thankful for:

- no snow on the road to Omaha

- our neighbor cleaning our driveway and sidewalk. Three cheers for great neighbors!

Chemo Is Going In

Today's hospital admitting was very efficient. 

Jack was checked into a room without much waiting and was ready to start receiving chemo around 6 PM. That bodes pretty well for the release time which should be some time on Saturday. 

He is doing really good at the moment. He ate chicken nuggets for lunch, grilled cheese and ramans for dinner, and is snacking on KitKats now. He's also been drinking water pretty steadily. Hopefully all that food will clear the stomach before nausea kicks in. 

Here is what one type of chemo looks like (etoposide).  (The clear cylinder on the left.) Jack gets all of his chemo drugs intravenously, but in certain cases they can also be given as pills or potable liquids. 

He will get a cocktail of three different drugs, and they all take about an hour or two each. 

That is not bad. For his last cycle, one of the drugs was running for 24 hours, during which he couldn't leave the floor. Now at least he can go for walks around the hospital. 

This is the view from our room, looking eastward at Dodge St. :

Today I'm grateful for:

- spending time on my birthday with my family,

- easy admittance, makes Sarah's and Jack's visit easier,

- timely start for chemo infusion. 

Fifth Chemo Cycle On Tuesday

Ok, the specialists OK'd us for the fifth cycle of chemo on Tuesday. 

We had a great weekend, playing board games, building things, and watching some motorcycling shows. 

Jack is doing great, he's not bothered any more by nightly line flushes, weekly dressing changes and monthly port flushes. 

Nothing else to report, we're hunkered down, waiting for the cold snap to pass over us. 

Had A Great Checkup With The Surgeon

After a few great (normal) weeks, it was time to get back into the treatment mode today. 

We had a great follow up with Jack's surgeon today. Well, Jack got a brief rectal exam, which he labeled as "pretty weird", so I'm not sure that it was great in his mind. 

But, here is what we learned today...

At the moment, Jack is free of tumors. (Not to say that he is cured, just whatever was in him was either killed by chemo, or removed during surgery.) The surgeon took qute a good look inside and around him, and is very confident he didn't miss anything. 

The tumor that was removed, was indeed the "two" masses that were originally detected by CAT scans. It turned out that the two were connected by tissue, and were in a shape of a dumbbell or a peanut, if you will. That was what was removed during surgery. 

Pathology confirmed that the tumor was neuroblastoma, and it was responding positively to chemo. 

Size of the tumor was about 12cm in length, so around 3-4 inches, and about a golf ball size on each end. 

We are now clear for the "last" round of chemo, which will probably be starting next week. 

I say "last" in quotes, because he will be receiving one more dose after this, but that dose is a part of the second phase of his treatment, and not a part of the chemotherapy phase. (That is a part of the Autologous stem cell transplant, I'll write more about that as it nears.)

For now we are very happy with where things are, and are ready to wrap up this first phase, and go on to the next. 

Here is a little pic of the top of his head. This white fuzz hair came after his regular brown hair fell out. Also, a little patch of brown is still visible, the little tornado where his hair starts growing I think.

I'm grateful for:

- treatment going as planned,

- Jack being a good sport during "the exam" (he was laughing with the surgeon after it...)

- playing a board game (one of the Christmas gifts) as a family yesterday, (Though I'm not grateful I lost to Sarah, twice!)

- carrying Jack to his bed on New Year's Eve. (He won't let me carry him around anymore, partly because he is 7 now, and partly because of the ports in his chest, so I appreciate holding him like in the old days, when he was a little guy.)