Friday, July 31, 2009

Aidan Sees the Sea

Aidan got close today. Hasn't put his feet in the sand yet, but he did stand at the top of the boardwalk and looked at the ocean.

Have a guess what his favorite color is?

No More Line!

Aidan outlasted me yesterday, so no blog post. Here he is at 10:30 PM tonight. Doesn't look very sleepy does he?

Though some things remain the same (adolescent sleep schedule), he has made big strides this week. He's eating and drinking without hesitation and fewer reminders now. Yesterday he had his PICC line removed! Tomorrow we will go to the beach.

Tuesday, July 28, 2009

Cousin Therapy

It is so very good not to be in the hospital! We returned home on Sunday for a couple of hours to a clean, made-over and stocked home - banners, cards and flowers everywhere. We switched some bags around and then headed to Bethany for cousin therapy. Aidan is brighter, eating more and loves to be with his cousins! He's not out of the woods yet (temp a little higher tonight), but I'm hoping he'll be well enough to have his line taken out tomorrow. Then we can really go to the beach.

Monday, July 27, 2009

Aidan Has Left the Building

Aidan was discharged yesterday. Hallelujah! He had a farewell tricycle race in the hall, hugged the nurses, drank some yogurt, and left smiling. He and Julie headed off to Pennsylvania to unpack the car, repack, and drive to the beach for a family vacation. He is still reluctant to eat and drink enough (getting full very quickly) and there are side effects from the radiation and medical issues to monitor, but he loves to be with his cousins and was thrilled to be going to the beach. This may be just the medicine he needs.

Saturday, July 25, 2009

Yesterday was rough, but today was much better. Aidan was able to go out on pass and felt well enough to really enjoy a live butterfly exhibit at Brookside Gardens. He drank on and off during the day and asked for and ate solid food this evening. He's eager to go to the beach to be with his cousins. He's almost there!

Friday, July 24, 2009

Getting Closer

Day 33. We're still here. Aidan is asleep after a long night. Yesterday was MRI day. Nothing by mouth in the morning (aka NPO for sedation). He was under sedation from 11-3 and then slow to wake up after that. He did take his Zofran (antiemetic) by mouth in the afternoon. The oral Zofran is not working as well for him (absorption factors), so he became nauseous and threw up his second oral dose plus a good bit of yogurt during the night. Back to fluids and IV Zofran for the remainder of the night.

The MRI. Aidan's scan was scheduled as part of the study he's in here at NIH. He would normally not have one done this soon after radiation, as is too early to draw any meaningful conclusions. Radiation typically causes some swelling. Also, there continue to be changes on the cellular level for several weeks following treatment. That said, there was some enlargement of Aidan's spinal lesion. Again, it is too soon to know how to interpret this finding. Aidan is scheduled for another scan on September 10. At that time, we'll know more.

The Plan. We'll work today to see if we can get a combination of oral meds in place to adequately control his nausea. Nausea seems to be the primary factor impeding discharge. He is otherwise strong and rearing to go.

Thursday, July 23, 2009

To Infinity and Beyond!

Aidan and Buzz Lightyear blast the linear accelerator for the final time. (Buzz accompanied Aidan to treatment every day for the ritualized destruction of the equipment.) Jim steadies Aidan who stands atop the treatment table.

Aidan in his own words.

Wednesday, July 22, 2009

Making it Real: Radiation

Aidan's mask with the focal site circled

Radiation burns

Axis marks for focal boost to spine

Aidan has his last treatment on July 22! He drank more yogurt today (25 oz), so he is one step closer to discharge. He has an MRI on Thursday - we'll see after that...

A few facts:
31 total treatments beginning on June 9th
30 days as inpatient and still counting

Tuesday, July 21, 2009

A Mystery Solved

So I had a hunch after watching Aidan today, that nausea is what is keeping him from drinking his yogurt. It took him the entire day to drink 10 oz. Half of that he consumed shortly after receiving his 4 PM dose of Zofran (antiemetic). At 10 PM I asked for a second anti-nausea medication. I told the nurse I was doing an experiment. Minutes after the infusion was started, Aidan spontaneously picked up his cup and started drinking. Then within the next hour and a half he drank the better part of a second cup (7-8 oz total). Stopped because his stomach was full. Nurse will be reporting about it tomorrow!

Now for some fun... Aidan loves to assist the nurses when they take his vitals. Here he is attempting a temp. Enjoy!

Sunday, July 19, 2009

Slow but Steady

Aidan is entering his fifth week as an inpatient with only three treatments left. His weight is much lower than it was, but has stabalized. He has onging nausea and pain for which he is being medicated. Today he rode the borrowed trike again in the morning and then was able to spend several hours out of the hospital. Over the day, he drank a whole cup of yogurt! We are still hoping that discharge will be possible by Friday. We'll see... No pictures from today. I'll try to take some more tomorrow.

Trike Racing

Aidan is getting much stronger and more confident physically. Today we borrowed a tricycle from Rec. Therapy which he rode all around the unit, atrium, courtyard and playground. He's pictured here with the Rec. Therapist, racer Vanida, and starter Bob. He won this race handily, finishing half a lap ahead of Vanida!

He made a couple of little steps with eating too. With morphine on board (along with the fentanyl patch) he was able to gnaw on one side of a chicken nugget and drink about 6 oz of yogurt.

Friday, July 17, 2009

Aidan eats pizza!

Another big step tonight - Aidan ate almost half a piece of pizza. It was preceded by morphine but didn't involve any bribery or convincing this time - he just saw it, asked for some and ate it. We'll see what tomorrow brings...

Aidan Drinks Yogurt!

It finally happened. Three weeks and four days after admission, Aidan drank half a cup of yogurt. 

Wednesday, July 15, 2009

The Wind on HIs Bald Head

A mixed day today. Grumpy Gills but did allow himself some fun and progress. Friends Mira and Isher (big kids whom he adores) came to visit. (I'll add a silly mustache pic tomorrow.) Then Pops came with his convertible. When Pops left, of course we had to walk him out to the valet attendant. And of course Aidan needed to feel the wind on his bald head. So we hopped in (breaking a few more rules in the process), and drove a loop around the front of the Clinical Center. It was well worth it.

And now for the progress part...

Aidan drank 2 sips of yogurt! Through a combination of subtle and finessed efforts, reason, natural incentives, sticker charts and even out right bribery(the promise of a very cool Thomas toy), oh and did I mention morphine, Aidan was very brave and tried the yogurt. His throat still does hurt, but he seemed to really enjoy tasting his yogurt again and was excited about the progress.

Night Out - So to Speak

The upward trend continues! Still no intake by mouth, but Aidan definitely is brighter. Last night and tonight we snuck out to experience the night, IV pole, stroller and all. Last night we sat on the warm concrete and put our feet in the grass. Tonight we ventured to the Children's Inn where we sat and enjoyed the stars and night-time sounds.

Monday, July 13, 2009

A Nice Afternoon: Trains and Dvorak

Aidan was up for an outing this afternoon, so we took a bag full of his engines, his IV pole and walked to the play room.  After some train table time and sand play, we packed up the engines and moved onto the atrium where we saw the BSO perform Dvorak. At the end, Aidan chatted with the contra bassoon player and heard an impromptu rendition of the grandfather from Peter and the Wolf. He was all smiles. 

Sunday, July 12, 2009

Day 21

Aidan now has spent a full 3 weeks as an inpatient. Thought not totally smooth sailing, this past week was much easier than the first two. Hopefully, we are really on an upswing. Only 8 more treatments!

Also of note: the planets finally aligned, so we have new photos on the blog. The skate board pic was taken the week before treatments started. All the others were taken in the past three weeks. More to follow as we climb this technological mountain (new computer, multiple cameras, highly secure wifi network...).

Thursday, July 9, 2009

Amy and a full can of shaving cream spent the afternoon with Aidan today. Aidan had a really good time, as evidenced by Amy's great photo!

It's wonderful to see him smiling and laughing. By evening he's tired and uncomfortable but each day seems a little better.

Fun and Games

The upward trend continues! Yesterday, after Aidan awoke from sedation, a package was delivered to his room - a belated b-day present from friends Lily, Ruby and May. Now, on a good day, a remote controlled Lightning McQueen would be a score. But when you're in the hospital with a captive nursing staff, it's the mother load of prank potential... So we spent the early part of the afternoon ambushing anyone who set foot in the room. Here's the low-down: car would be stashed where it had a straight shot to the door. Aidan would lie innocently in his bed, controller in hand. Someone would be summoned to the room, and KAPOW! Lightning would careen out of his hiding place and crash into their feet.

When the staff was all ambushed out, cousins Ali and Lizzie arrived for a visit. The fun and games continued on the playground, where LMcQ did death defying stunts on the slide. Though we did have a return visit from Grumpy Gills (Aidan's alter-ego) in the evening, the day was a pretty outstanding one.

Wednesday, July 8, 2009


Remarkably, once Aidan awoke from his propafol (short-acting intravenous nonbarbituate sedative agent) induced slumber yesterday he was charming (no sarcasasm!). It was his best day since admission!! No morphine for break-through pain. He played and smiled and was as active as a 5 year old tethered to an IV pole who hasn't eaten for over two weeks can be. Go figure. His POB (attending pediatric oncologist from the floor) felt the improvement might be due to the three-day weekend without treatments. He did get a tranfusion in the afternoon, but the trend for the day was already well established by that time. I'll take it whatever the explanation.

We started the "cone down" (i.e., focal boosts) this morning. How's that for jargon? He sleeps as I type, so no news yet for today. Stay tuned...

Tuesday, July 7, 2009

Finished CSI!

The good news is Aidan had his last CSI (full brain and spine) treatment today! He has 11 treatments left all of which will be focal boosts to tumor sites.

You might gather that the good news implies some not so good news... The down side of having received the last CSI treatment is that this will be the toughest week yet for side-effects. If yesterday is any indication, the next week will suck (i.e, pain, nausea, breakdown of skin, the super-duper crankies...). There is comfort in hitting bottom however - the bottom means that there is only one way to go!

Meanwhile, I'm exploring options to help Aidan sleep through as much of the next week as possible. For myself, I've asked that the team order vodka. Unfortunately, they've informed me that this is a dry campus. Coffee will have to do I guess.

Sunday, July 5, 2009

A Special July 4th Visitor!

We're just winding down from our 14th day of inpatient status! Aidan was able to leave the Clinical Center (aka Building 10/the hospital) both yesterday and today. Though our outings are brief, they do lend some structure and excitment to the days. Yesterday, Carole smuggled Jasmine (our dog) onto NIH grounds. We had a clandestine meeting with her on the playground. As soon as we work out some technical difficulties (i.e., getting a wireless pass code), there will be pictures! (Rumor has it that the individual responsible for wireless access will be back in the office tomorrow. )

Meanwhile a few highlights/factoids...
Aidan slumbers before midnight 7/5!
He gained 0.1kg (TPN successful!)
Pain management still #1 goal
2 days of CSI (craniospinal irridation) to go - 2 weeks of focal treatments after that

Friday, July 3, 2009

The Big Outing

Aidan now has a fentanyl (narcotic) patch and can be disconnected from his IV tubing for brief periods of time. Today he was able to go to the Children's Inn (on the NIH campus) for a while. He chose to play pool, air hockey and several Wii games then went to the playground briefly. When he returned to his room he was tired and took a very long nap. His nurse woke him for vitals and medication at 8 pm. Julie asked if he needed a minute to wake up and he answered yes and added that he would need 20 minutes!

He's awake as we write this post and there's no clear sign that bedtime is approaching. . .

Wednesday, July 1, 2009

Now I Am Five!

Aidan turned five on Monday! The celebration started on the Friday before his birthday and continues. His room is decorated and festive and he's busy telling people he's five now.

He's looking forward to a big celebration with all of his friends later this summer when he's home and able to really enjoy it. Meanwhile, family and local friends have been visiting when he's up for it.