Tuesday Night Update

Our awesome Home Healthcare nurse came over on Monday and put Jack's NG tube back down. Oh, and lucky me, I got trained too. So next time it comes out, I'm the one that gets to put it back down. (eyes rolling) I can't even imagine the drama radiating from our house when that happens. Calming meds for two please! :)

Jack's busy working on school work and the glasses make reading so much easier. As we are continuing through treatment, his pupils are slowly bouncing back to normal size. He's been wearing his glasses more and more. Getting used to the bifocal only took a few days and he was good to go. 

Today, little dude was in good spirits and didn't need any pain meds until 6pm this evening. 

He was up late last night, not sure what was going on, but he was still snoozing at 1pm today. In the last few days, he's really been getting up and walking around.. without his walker!! He's still a bit shaky but doing pretty darn good. He's still skinny, but I know he's put on a pound from our last doctor's visit. It was slow coming off, so it will be slow putting it back on. 

This afternoon we made a pit stop at Ivanna Cone. He was craving some good old fashioned ice cream. 

He's usually a mint chocolate fan, but today he went with straight up chocolate. 

We have physical therapy Wednesday and Thursday to help with strength training. He really likes going. They have a punching bag that he is giving some good punches too and kicking the soccer ball around. Other than that, our daily routine is pretty low key since his energy level and walking is still low. 

Today I'm grateful for:

- for our awesome neighbor mowing our yard. 

- Jack starting to feel better each day. He's even a happier little guy too.

- the glasses were pretty easy to get used to. I was a bit worried, but he loves them now. 

Kind Of A Crazy Weekend

Jack had a busy weekend. 

On Friday evening, he and mom had to go to the emergency room in Omaha because his central line was plugged up. (Blood naturally clots around such things.) Since that is the line through which he receives his treatments and transfusions it has to be kept open and able to "flush". So, a couple of hours at the ER and anticoagulant flushes later he was scott free. (When they left, around 10 pm or so, apparently the place was still full of little tykes. Those nurses must never get a break...)

On Saturday, we went to see inlaws and play with cousins. 

Today we just watched movies and critiqued the latest spider-man flick. (Three out of five stars from both of us.)

One little setback tonight is that he vomited, so his feeding tube came out. I guess that's actually two setbacks as he'll miss out on a night of calories and he'll be pretty worked up tomorrow when the nurse reinserts the tube. 

Tonight (well this morning) I'm grateful for:

- the line flushing on Friday. If it hadn't flushed, he would have needed another surgery to replace it. I was doing a happy dance when Sarah texted me from Omaha. 

- a fun day yesterday, giving Jack an opportunity to be active and play with his little cousins. 

- Jack got some glasses, yay, so he can finally go back to reading and seeing things on the iPad. (The treatment dialates his eyes pretty bad, so things are fuzzy up close.) He's got some snazzy bifocals now and is happy to be able to see and read things. 

Quick update

Jack is home! Horray! He was released Monday and we got home in the early afternoon.

Monday night was pretty tough with aches, pains and just didn't feel too hot. I think by 4AM, he was up 10 times. NG tube was vomited up too. :(

Tuesday was a lazy day of taking naps off and on catching up on sleep. Wednesday we were at the doctor's all afternoon. Labs, dressing change, replacing the NG (feeding) tube. We are still taking the GMCSF injections until Sunday. (A few got added to the schedule.) 

Labs looked good today, so not sure when we'll be back at the clinic. I need to call on Monday with how the weekend went. Fingers crossed for smooth sailing. 

Jack started taking the Acutane pills, so here soon, he and his Burt's Bees Chapstick will be best friends. 

His NG feeds are just running at night to give him some extra calories. (About 800 calories over 12 hours.) Hopefully in the next few weeks he'll start to put on and keep on the weight. Today, he weighed in at 39lbs. 

He is able to walk on his own, but is a bit shakey, so we still use the walker or he just holds our hand. But he is visibly walking better. 

He'll have some physical therapy tomorrow, and that really seems to help. 

Tonight he tried some chamomile tea, so Tibor and Jack drank it up like a couple of gents. Pinky up and everything. 

Hoping For A Release Tomorrow (Monday)

This treatment was an easy one compared to the last few. 

Jack received only half the normal dose, so he needed much less morphine. 

He may need a little transfusion tomorrow but maybe not. His blood counts were borderline, so the doctors will make a decision tomorrow. 

More importantly, his urine samples are clean and nominal, so it looks like kidneys and bladder are handling everything like superstars. 

Jack had a busy day with company, which was really great for him and made the day go by faster. 

He even went for a walk around the floor and walked around four times, plus two and a half times in another session for a total of six and a half laps. This is more walking than he did in the past three weeks combined. 

Tonight, I'm grateful for: 

- kidneys handling everything

- Jack getting stronger

- fun company, giving Jack an opportunity to socialize, eat better and get more exercise!

Week 4 of Immunotherapy Treatment

Jack started his antibody treatment today. It's just half of his usual dose, so it will be a little easier on him. He's still on morphine and all hooked up to monitors, but I can tell the pain isn't as bad. He spiked a fever of 103 tonight, so they drew cultures from his line and he's getting an antibiotic, Rocephin every 24 hours for the next few days.


Jack's weight is down 15% from June, so NG tube was placed today for a while to help him gain some weight. We're going home with it, so I'll get trained on Monday on how to do the feedings at home. He says it doesn't bother him now, he's used to it, so hopefully it stays that way.

Today we had the Storm Chasers Baseball team come in with some cool stuff for Jack. Also, Thursday is pet therapy day, so a visit from the dogs is always fun.

Kinda of a quiet day, (except when the put in the NG tube, Yikes!) but quiet is good. He even took a walk around the nurses station with his walker, making all the nurses hoot and holler how strong he's getting.

Today I'm thankful for:
-Jack's not feeling so rough today with only getting half the dose of medicine. Hopefully in the next few weeks with NG tube and PT, he will gain some of that strength back so we can get back on track with treatment.
- Chase seems to be really liking High School so far. Granted it's only the first week, but going to a new school and making new friends seems to be going good.

It's Wednesday.

Jack was released on Tuesday afternoon from Children's Hospital. Word was to keep an eye on the rash and wait for more tests to come back from the lab. It's not chicken pox or anything in that contagious category of viruses, which is good. 

Today Jack and I had a busy day. We spend enough time in the hospital, and with a day at home, no way were we going to be bumps on a log. 

We spent almost two hours at the Lincoln Zoo. He's a big fan of the turtles. He wants to build a little area in the backyard for some turtles to roam around during the summer. In the winter we can bring them in the house, or he said we can move somewhere warm where they can be outside year round. I said no to both. (I know, such a mean mom.) 

Later on this afternoon, we had an eye doctor appointment. His vision is pretty blurry still and he says words and letters on the ipad look like Chinese characters. His pupils are constantly dialated and pretty sluggish responding to light, causing the blurriness. Not a good thing since school is starting. He will be soon sporting a nice pair of bifocal glasses. He's happy to be able to see better. 

Lunch was at his favorite place, Raising Canes. He's still a big fan of the chicken fingers and Texas toast. And to finish out our day, we had our home healthcare nurse pop over for a dressing change. 

Our suitcases are packed and ready for tomorrow when Jack will start his fourth round of Immuneotherapy. Hopefully the plan is to get released on Monday, but who knows. We'll just play it by ear. 

Monday Update

Oh man, what a day! We were here bright and early this morning gearing up for treatment and ran into a big hiccup. First, his heart rate was pretty high, so he had another EKG and Echogram to make sure heart looks good. Heart is good, just beating about 160/minute. A bit fast for their liking.

Pic: Jack sporting a pudding mustache earlier today.

Then as Jack was changing into some shorts around 10am, I noticed he had a pretty good patch of raised bumps on his thigh, a few on his knee and some around his groin area. I didn't see them there last night and this morning Jack was dressed quick like in the dark and popped in the car right before it was time to leave. That little rash patch caused quite the stir, we had three doctors checking it out and then a team from Infection Control to take a looksie at them. Labs were drawn and rash was swabbed and all came back negative for anything serious. The plan is to watch it through tomorrow and if it looks better, we get to go home until Thursday. The doctors want the cultures to grow for 48 hours to make sure it's nothing serious. His immune system is all out of wack and since we were out and about this weekend, who knows what he could have picked up. As of now, we don't know what has caused this little raised rash.

His weight is still down, lower again since last week. Which I have no idea how, he has been eating like a super star. It's very frustrating playing the roller coaster weight game. We never have enough time in-between treatments to put any weight on him. It's to the point where there isn't any more wiggle room for weight loss. There is talk about a NG tube again to help with a nutrition supplement. He has no idea about this and glad he doesn't read the blog. Sorry little dude. 

Physical therapy came in today and worked with Jack. They did some stretches, range of motion exercises and some standing and sitting. Jack did good and didn't give the lady to much flack. :) 

Also, we asked that a Child Psychologist came in to talk to Jack. He's been having some increased anxiety since starting the Immuneotherapy. It's been a long road, almost a year now of being sick, poked and going through this whole shebang of treatment. Although he has been amazing throughout this, there is only so much a seven year old can handle. Hopefully we can get him back to being happy, somewhat carefree and whistling.

On a side note, the moon looked pretty cool this evening from our room. It was the highlight of our crazy day!

Happy Sunday which is ---- National S'mores Day!

Jack had an great weekend. He's feeling a little better each day. Still not walking on his own, but he is getting around pretty good with the walker. His appetite is pretty good but is still pretty skinny. He's been drinking chocolate milk like no other. I am sneaking in some Carnations Instant breakfast for more calories, protein and fat. He thinks this 'new' chocolate milk is delightful.

We quit taking a couple of meds this weekend, Periactin (appetite stimulant) and Gabapentin (nerve pain). I think the side effects of were doing more harm that good. Jack is also having to take the injections every morning. They are going so-so. There isn't any fat on him, so I think this little thighs will be getting sore. He will have to take shots for the next 12 days.

Saturday, Jack and Tibor went and saw Teenage Mutant Turtles. Jack loved it! Saturday night Tibor built a little fire pit, and we roasted some marshmallows and made some s'mores. Yea, it was in our backyard, but we pretend we were in Colorado camping in the mountains. Sunday we all went to see the movie Into the Storm. It was pretty good. Walked (Jack wheeled) around the South Pointe Mall for a bit. It was nice to get out for a while. We had tacos tonight for dinner and for desert, it was custard from Culvers (Bonefire S'mores of course) for desert.

We are packed and ready for our week of treatment. Check in Monday at 7am. He'll be getting the anti-body med, so he'll be hooked up to monitors. Just a half dose this time, so hopefully an easier go around this week. I hope and fingers crossed.

Today I'm thankful for:
- having a nice weekend. It was calm and relaxing. Just what I needed.
- Chase starting school on Tuesday. He's ready for school, I think he's been ready for a while.
- for great co-workers at Duncan Aviation. It was my last day on Friday. Jack's treatment this last phase is pretty intense and I felt that all my time and energy should be spent on him and keeping our crazy family in order. :) We didn't say good bye, but a 'see you later.' In the 2.5 yrs that I have been there, I have meet some incredible people that I can call friends now. I foresee lunches in the future together, I know they would like to continue to see and hear how Jack is doing. 

Monday Update

Today Jack had another followup at the clinic. Labs all look good and blood pressure is coming down. (High BP was related to kidneys being damaged. BP lowering, kidneys healing themselves more and more. We are halving the dose of BP medicine.)

His weight is pretty low, only clocking in at 39lbs, this is the thinnest he's ever been. We're encouraging lots of protein, fats and what ever else looks good to eat. I'm hoping the increase in mobility will get him more hungry. We have also increased his appetite stimulant to 3X a day. He's not a fan of peanut butter or nuts, some cheese is ok, he used to love yogurt and granola, but not sure what happened there and won't drink shakes either. Sigh.... he makes it difficult at times when it comes to meal and snack time.

Plan is to still admit on the 11th of August for a week of anti-body treatment with some adjustments. He is only going to receive half the dose this time around. I asked about waiting a week or so and the doctor said a week isn't enough time to really make any great weight gain. So, some medicine is better than none, I guess that's the logic.

Because Jack has lost a lot of strength, the doctor wants us to start some physical therapy. We have an appointment at Handprints and Footsteps (Pediatric PT) on Thursday morning. Back up to Children's Thursday afternoon for another follow up. I'm pretty sure we will start the injections on Friday and they go throughout treatment. Not sure how these are going to go since there is no fat on on him. Maybe I'll see if he'll let me try his hip instead of thigh, not looking forward to these. Ugg!!

Thursday evening we have open house at his school. Even though he won't be starting this fall, it will be good for him to meet his teacher. Maybe we can do some FaceTime with the classroom too when he's feeling up to it. So, a busy day on Thursday. He asked to go to the Lincoln Zoo on Wednesday, it's nice to hear him wanting to get out and about.


Today we're thankful for:
- Jack being able to use his walker more, which is saving both my and Tibor's back. :) We have a wheel chair too if he wants to go out and about.
- finally we are starting to see small baby steps to Jack starting to feel a bit better. Though I haven't heard him whistle in a while, (he whistles when he's happy and feeling good) hopefully soon I'll hear that melody out of his lips again. 

Starting To Walk

Jack is feeling better and stronger and he even took a few steps on his own today. He has a couple of walkers too that he can now use around the house. 

Tomorrow we may even take the wheelchair and go outside or to the store. 

His blood pressure is nice and normal now. 

So, all in all, seems like we're finally on the upswing. We'll focus on rest and eating this week and hopefully he'll be ready for the next round of immunotherapy in a week.