Thursday, July 31, 2014

Lots Of Sitting Around, But Getting Better

The little guy still can't stand on his own or walk, but he is getting visibly more stable by the day.
Water weight is gone, YAY!, but he still has a good deal of pain in his feet which keeps him up a couple of times per night. This is a huge improvement compared to five and six times a night earlier. (All last week and earlier this week, it was brutal getting up every two hours.) 

His blood pressure is starting to stabilize, but is still a bit high. We take his BP five times a day and will call the office Friday to see if we need to increase his medicine. He's not taking the Actutane currently, I think we will start back up on Monday. Not sure if this will delay his treatment, since per the study he's too take the Actutane 14 days prior to admission. We have another appointment on Monday and I'm sure we'll find out more. I think we need another week plus to recoup, to start back up in 11 days, yikes. 

Also, the appetite stimulant he takes is working! Jack wanted to go to IHOP this morning for breakfast, which he chowed down like a super star.
So, fingers crossed those muscles start rebuilding. He's pretty skinny again now that he's lost all the water weight and then some being in the hospital with no appetite.

Today we're thankful for:
- Jack eating and hopefully start to gain some weight back.
- Chase, what a kid he is getting up at 4:15am to detasseling corn. It's his first job, not the easiest, but he''s sticking with it. He said he might even do it again next year. Wow!
- going on drives with Jack. Since he can't walk around and be outside, we hop in the car and go for a drive. We've explored a lot of the city. Lincoln is getting a bit boring, I told him we should go some where cool. I was joking and said maybe we'll drive to Colorado and up to Pikes Peak. He was all about that! Too bad it's 8 hours away!
- Jack's eyes. Crazy how much his eyes and a small smile can say speak to your heart. 

Monday, July 28, 2014

Water Weight Is Slowly Coming Off

Jack is losing the extra water weight which is good. His belly, thighs and feet are still swollen but are slowly getting better. 
He's eating really well, so hopefully he's putting on some healthy weight too. 

He had a doctor appointment today and his blood labs and urine sample looked good. 

His blood pressure was very high however, probably due to water retention, so he got a pill for that. 

Unfortunately he still can't stand or walk on his own. I think once he gets rid of the water and gets a little bit stronger we'll be able to take a better look into that. 

Until then the orders are to take it easy, eat and mind the fevers. 

Friday, July 25, 2014

Friday Update

Jack is feeling a little better, but not much. He had a doctor appointment on Thursday; labs came back fine, doctor wants to keep a close eye on his fluid retention and input and output of liquids. He has only lost a half of a pound since leaving the hospital on Tuesday.
We have another appointment (follow up to the follow up appointment) on Monday.
Jack's belly, legs and feet are still really swollen and his joint pain is still hanging around. He's still not able to walk. Two more medicines have been added to his list to help with the pain. His seems happy as long as he doesn't have to move. 
Our doctor called this afternoon to check on the little dude. If his swelling increases or he can't go to the bathroom, we're to call Children's over the weekend. Fingers crossed no trip back up to Omaha. 

No big plans for the weekend, I hope he'll be able to walk...... well I'd just be happy if he could stand without wobbly legs and not cry. Poor little dude. 

Tuesday, July 22, 2014


We're finally home! Jack was released this afternoon from the hospital and is glad to be home. I'm pretty stoked myself and I think Tibor and Chase missed us too. Jack is retaining a lot of fluid still, weighing in at 50 lbs when he left today, he looks a like a little chipmunk. I foresee lots of trips to the bathroom in the next few days. (He weighs about 40lbs.) 

One of the side-effectss of the Immunotherapy is joint pain and swelling. Jack is pretty stiff and can barely walk, or maybe I should say can't walk. He can shuffle a few steps, but then we need to carefully pick him up and carry him. (And weighing in a 50 lbs, he's no feather. :)) 

We have a follow up appointment on Thursday afternoon for labs and to see the doctor. I think we'll talk about tweaking the next round of treatment. Last few days of kidney stress and fancy medical names like actute kidney failure was a bit stressful to hear. Those kidneys were mad as hell and my vote is not to irritate them again. The part of the kidneys that were injured was luckily a part that can heal itself and isn't permeant. 

So, slow and steady for the rest of the week for Jack. The only medicine Jack is allowed to take is Tylenol. He starts taking his Acutane medicine tonight, so we'll expect the dry skin and chapped lips next week. He still has a week or so before we start injections, and back to the hospital August 11th for a week of anti-body treatment. Not even going to think about going back, only R&R on our minds for now. 

Thankful for:
- Jack being released today
- Chase and Tibor decorated the house for us with welcome home balloons, confetti, signs and streamers. It looks like a party in our house. 
- no permeant kidney damage 
- and thank you to everyone who keeps Jack in your thoughts and prayers. It was a tough 8 days in the hospital. Well, more like 13 days. We only had a short recoup weekend (the weekend before last) before having to start this leg of treatment. 

Monday, July 21, 2014

Doing Better Tonight

It was a long day for Jack and Sarah today, again, but it looks like the night is ending on an encouraging note. 

The kidneys and bladder ultrasound (which they took last night at midnight) turned out to be OK. 
Jack was receiving maintenance fluids all day today and drinking well, but not much was going to his bladder. We're still not sure why, but apparently that is one of the rarer side effects of immunotherapy-- fluid retention. 
So he was looking all swollen and plump from retaining all that water. 
This evening he received some medication, I'm not sure what it's called, but it sends a signal to his body to get all that fluid to his bladder and shortly after he peed. 
So, hopefully he will get a handle on this retaining business soon. 
Overall he's making progress, last night he needed a catheter, but tonight he's taking care of business all on his own. (TCB as Elvis would say.)

His bones and joints are also extremely stiff and painful, so he can't move much, but he can take Tylenol for it. I'm not sure if it helps but it's something. 

He also got a blood transfusion tonight, his hemoglobin was a bit low. 
He promptly requested a PBJ sandwich. Carbs, sugar, fats and protein, exactly what he needs. 

No vomiting, no diarrhea, so that's something to be thankful for. 
On a side note, the doctor was still there at the hospital at 10:30 at night... I don't know how they do it. 

Monday - no release today

Still no pee today, so they're staying in hospital tonight. 

Jack is still retaining a lot of the fluids, rather than getting them into the bladder and passing them. 

Next step is to give him some medicine that will help the body get the fluids into urine and into bladder and see if he can pee then. 

If that doesn't work, it's back to the catheter. 

The teacher at Children's brought Junie B Jones books, -- Jacks favorites, so Sarah reads them and makes him laugh. 

Otherwise he snacks and drinks OK, so hopefully the urinary situation will start resolving itself. 

Sunday, July 20, 2014

Sunday - Hopefully They'll Come Home Tomorrow

Well, it's Sunday and Jack and Sarah are still at Children's. 

The kidneys seem to be working fine but the little guy is unable to urinate. He does have a catheter which drains his bladder, so hopefully tomorrow they'll be able to take it out and if he can pee on his own, they should be ready to come home. 

They also have an ultrasound for the kidneys scheduled for tomorrow. 

He was supposed to go to a camp organized by Children's this week, but that won't be happening now. I'm not overly upset, he needs a lot of time to get back in the eating/sleeping sync, but I'm pretty sure Jack will be upset. 

It's been a long week for Sarah and Jack and an even longer weekend, and we'll be so happy to have them back home. 

Saturday, July 19, 2014

Doing Better

Ok, it looks like kidneys are back in business. 
He did get a catheter inserted yesterday, which was removed this morning, to help relieve the bladder and get the filtration back on track. 

It seems that heavy doses of ibuprofen affected the kidneys, and immunotherapy combined with lack of drinking and eating took their toll on the bladder. 

But, things seem to be back on track now. 
He's still talking in his sleep, and zonking out throughout the day. I think that should go away once he gets in a more proper sleeping and eating rhythm. 
His bones are being overworked too making the antibodies, so that keeps him uncomfortable. 

The plan is to stay in hospital one more night, and if he can pee and eat a bit, should be released tomorrow, on Sunday. 

Friday, July 18, 2014

Friday - Still here at Children's Hosp

Jack's labs came back this morning and his kidneys aren't happy. Between the meds, water retention and some dehydration his kidney chemistry panel numbers did a jump in the last 24 hours.

They have increased his fluids and put in a catheter. Also, a kidney doctor is going to come up and take a peak at him. More labs tonight and just continue to monitor him. Jack's taking a late afternoon nap, been a busy day.

Not sure when we're going home, fingers crossed maybe tomorrow at the earliest. Come on kidneys! 

This morning we had some pilots from the Blue Angels stop by the room. Little dude got a really cool autographed poster with all the pilots name on it. Maybe next year we'll go and see them preform at the air show.

Thursday, July 17, 2014

Thursday update

Jack's on the home stretch of treatment this week. The plan is to be released early afternoon on Friday and we can head home for some R&R. It's been a long week with lots of interrupted sleep, as is every week of treatment. Nothing new there. We have an awesome night nurse that is pretty quiet coming in every hour, but I still wake up. (plus the darn monitor alarms are always going off.)

Jack got the thumbs up a while back to go to Camp CoHoLo. It's a camp for Oncology and blood disorders kids. Session 1 (6-11yrs) starts this Sunday and goes through Wednesday. It's staffed by oncology doctors and nurses that keep a close eye on the kids still going through treatment. (and the kids out of treatment too.) Jack's been looking forward to it for weeks. I wish he had a week to recoup from this two weeks of treatment, but I know he'll be in good hands there. And if he's too tired or not feeing good, we'll come and get him. Camp is at the 4-H camp grounds in Gretna, so not too far away from Lincoln. Three nights away from mom and day, first time away from home, should be interesting.

Top Pic: It's "Navy week" plus Offutt air show is this weekend. Jack got a special hat from the Navy -- The USS constitution is the Navy's oldest ship. Pretty cool hat. They were here to visit on Tuesday.

Bottom Pic: These are the lines Jack has hooked up to him, plus stickers on his chest monitoring hear rate and breathing, a sticker on his finger measuring oxygen levels and there's the always blood pressure cuff close by. It can get to be a tangled mess.
Today was pet therapy. He is always excited to see the dogs. I'm told a Dalmatian puppy will soon be added to the pack. After they leave, it's always the question if we can get a dog. He's always changing his mind what kind he wants, a Pug, German Shepard.. this list is ongoing.

Today we're thankful for:
- Treatment going well so far. We have the fevers under control now. It's just that morphine that makes him a bit itchy. He's maxed out on Benadryl. Between the morphine and Benadryl, it makes him pretty loopy. He's made a really nice back scratcher out of plastic forks and popsicle sticks. The nurses here think he has quite the imagination.
- Chase is quite the little cook at home. I've heard he's made a cake and some granola energy balls. Now, not sure how they taste, but it's a step in the right direction.
- White Noise App - this is the best app ever to drown out noise! We have it on all our phones and Jack's iPad. His favorite is the beach waves crashing. So every night when drifting off to sleep, we think about laying in a hammock between two trees, drinking a cold drink and listening to the waves crash against the sand. Ahhhh... hopefully soon, one day when his line is out and he can swim, splash and play in the ocean...

Tuesday, July 15, 2014

Week two of second Immunotherapy treatment

Jack started his second week of with a bang. Both treatments were running by noon on Monday and around 3:00pm he had a fever of 103.5 They drew blood cultures from both his line and arm to see if he had any sort of infection or if it's just the medicine. Almost always, fever is because of the medicines, but they don't take any chances. Doctor started an antibiotic just to cover all bases. On a side note, I would never want to be a pediatric phlebotomist. Man, they are great at drawing blood, quick and it's a one poke deal, but what kiddo is ever happy to see them. I can certainly attest to Jack not being a very happy camper seeing them at the door. They could come bearing gifts, candy or even money, still not a chance of a even the slightest smile.

All night he just couldn't break that darn fever. It was just hanging around 103.7 all night, which increases his heart rate higher, which then was setting off the monitors all night. Also, since he's on the morphine and is super relaxed at night, his oxygen levels drop too, which also set off the monitors. Antibody treatment doesn't get done until 5am, so vitals were every hour. Jack slept great, me, not so much.

Fever finally broke this afternoon. (Tuesday) Jack's getting a dose every three hours of either Tylenol or Ibuprofen. He's been nibbling and picking at food off and on. Nothing too serious, but I'll take all the calories I can. He wanted chicken fingers today for lunch, cafeteria was out, so I ran down the street to Raising Canes for him. He ate not quite half of his lunch and then about an hour later, he got a bad case of hiccups, and then all his lunch came up. :(

Days are a bit long since we can't leave the room. Day two, three more days to go. July is half over, the summer is starting to wind down. Before I know it, Chase will be off to school and fall will be soon behind.

Friday, July 11, 2014

Home for the weekend

Finally home for the weekend! Jack was discharged late this afternoon after getting a blood transfusion. Hopefully over the weekend he'll start feeling better and his energy level will increase. 
He came home almost a pound lighter, so he's hovering around 39lbs right now. Looking a bit thin, so hopefully that appetite stimulant will kick in soon. 

Other than that, nothing else major to report. Back again Monday morning bright and early for the second week of the second round of treatment. (Now that's a tonge twister.) Jack will get both the antibody and the IL-2 drugs. So he'll be hooked up to monitors and 24hr morphine drip. Yuck. But at least we know what to expect, so hopefully no surprises. 

No big plans for the weekend, just looking forward to spending time with Tibor and Chase. 

Thursday, July 10, 2014

A little Thursday Update

The week feels like it's dragging. Jack's energy level is pretty low and he's not too interested in eating.... not even candy, ice cream or chocolate. The medicine he's receiving is giving him fits of urgent bathroom visits. But, on a positive note, I don't think he's as sore as earlier in the week, which is nice. He's been taking two showers a day and stretching out his arm and shoulders. 

Jack's labs came back this morning and his hemoglobin is pretty low. (which explains low energy and no appetite) He'll be getting some blood after his infusion is complete tomorrow afternoon. Even though his central line has two lines, (lumens) they don't want both the IL-2 drug and blood running at the same time in case of a reaction. 

Friday afternoon can't come fast enough. This morning I was dreaming of a huge, soft bed in the middle of a quiet room all to myself. Looking forward to my own bed and kitchen. 

Today I'm thankful for:
- little dude getting some blood tomorrow. It'll give him a boost of energy for a nice weekend to rest, relax and recoup for treatment next week.
- Jack had a fever today of 101. Usually they take blood samples from both lumens on his central line and they have to poke his arm too. Not today, just the central line. Since we're on the downhill side of treatment and fevers are to be expected, they just kept an eye in him. An hour later, the fever came down. 
- a great staff here at Children's! I can't say that enough. I guess that's why their slogan is "We know children." 

Tuesday, July 8, 2014


Today was a much smoother day then yesterday. Jack is still sore from the new line placement and his arm is a bit stiff, but he's in good spirits. 

Children's Hospital now lets one parent back in the recovery room after surgery. This is nice for the kids to see mom or dad right after surgery, but maybe a little tough the first time for mom or dad seeing their child a crying mess from the anesthesia. It was my second time back, so I knew what to expect, and let me tell you, he was not a happy camper when he seen he still had his IV in - Strike 1(They told him it would be placed and taken out while he was still asleep and he would never know.) Strike 2- His new line is not in the exact spot as before, very close and off by only an inch, but he was mad-mad about this. (Surgeon moved it over a bit to avoid infection.) Strike 3- dressing had to be changed after surgery, it was still oozing and not dry and clean like it should be. A rough mid morning through the afternoon.
All is better today after sleeping for 12 hours. He's up and out of bed, relaxing on the couch today.

This week Jack is only getting the drug Interleukin (IL-2) 
IL-2 is a natural part of your immune system, a messenger protein called a cytokine which activates parts of the immune system. IL-2 doesn't kill tumor cells directly like chemotherapy. Instead, IL-2 activates and stimulates the growth of immune cells, most importantly T-Cells, but also Natural Killer Cells (NK Cells), both of which are capable of destroying cancer cells directly. He's receiving a continuous drip for 96 hours. The medicine (only 100 MLs) is in a cartridge contraption with a pump and then put in a little portable bag. (It's the little black bag in bottom left corner of pic. I called it 'purse like', which in turn he rolled his eyes at me. Hey... just saying:)) The only other med Jack receives is Benadryl. (Tylonal as needed.) Vitals every 15 mins the first hour, every hour for the first four hours, and then every four hours throughout the day/night. We can leave the floor and go down to the fountain in the loby.) Not sure if he's up to walking around yet, but we do have play time scheduled to get out of the room. A little Mario Kart racing on the Wii also helps pass the time. 

We took our last dose (for a while) of Acutane. Horray! Little dude's skin and lips were pretty dry and peeling. 

Weighing in at barely 40 pounds, we talked with our doctor about an appetite stimulant to hopefully put some weight on him. Periactin, normally used for allergies, is also great and used as an appetite stimulant. Hopefully this will help out with the always begging (and maybe sometimes bribing) him to eat. 

Other than that, we're just going to hang out here until Friday afternoon. 

Monday, July 7, 2014

Surgery #7 Is Done

Ok, starting the week with a little surgery. 
They installed a new (smaller) central line and Jack is waking up from the surgery now. 
(If you'll remember the previous line sprung a leak during the last treatment and they pulled it out. )
This one is smaller, so it shouldn't be bouncing around as much, and maybe it will be easier to shower with it. 

Little bit later today we start our two week long immunotherapy session. 
Jack won't need to be on maintenance fluids, which will be super nice. He'll be able to sleep through the night because he won't need to pee constantly, and he should be more mobile. 

The doctor also said she'll give him an appetite booster to help him maintain his weight.  

Jack's hair is coming back nicely, we're talking about haircuts. Him and I are thinking mohawk, but I'm not sure if the "council" will approve. 

Sarah will have updates from the hospital in the coming days. 

We're grateful for:
- injury free 4th of July. 
- surgery going well
- playing hard with friends and family this past weekend. 

Tuesday, July 1, 2014

Getting ready for the big weekend.

A quick little update. 

Last weekend we traveled north to spend time with cousins and had a great time. 
We've been watching the World Cup and cheering team USA (and team Bosnia, but they were out earlier than hoped.)
Tonight we saw Transformers 4. Jack liked it, but it was a long movie. He ate a whole thing of popcorn and downed it with you guessed it -- Coca Cola. 

He's eating OK, I think. It's hard to get a feel for how much he eats. Of course he's not hungry when it's meal time, so 45 to 90 minutes after everyone else eats, he wants something, and usually not what we had. But half a taco here, a bowl of cereal there, granola and raisins in between, and he seems to be doing ok. I just wish he'd wake up one morning and ask for scrambled eggs and bacon. 

No diarrhea any more, that seems to have stabilized. One of his medicines is drying out his skin pretty bad, so he gets nightly "lubrication". Otherwise he starts looking like a little lizard, molting his face. He doesn't mind, except in the mornings, his lips are painfully dry, and Chapstick doesn't work quick enough. 

Plan for the next few days:
- 4th of July festivities with family
- Monday: surgery to put in a replacement central line, then weeks two and three of immunotherapy back to back. 
I'm a little concerned about his nutrition during those two weeks, but I guess there's always a feeding tube option. Plus he seemed to eat once a day during the first week. 

Onwards and upwards. 

Today I'm grateful for:
- nice, safe weather. It's tornado season and I'm thankful we don't have that to contend with,
- World Cup. Not only did team USA perform admirably (especially our goalie, wow) but it really gave us an excuse to spend even more time together. 
- Panini soccer stickers. I'll take a picture soon so you know what I'm talking about. They're similar to baseball cards but much better since they're European. We've been collecting them and trading with people on craigslist. I grew up collecting them and am glad that I got to share that part of my childhood with the boys. 

(Notice how I said "a quick little update"? I lied:) )