Monday, August 31, 2009

A Very Grand Day Out

Aidan had a great time at his party! Muchos gracias to Megan and Laura for their creativity, energy and time. We have many wonderful memories to savor. Cory took photos, so I have only a few from the end.

Aidan had a quiet day today. Has had a fever since last night. Over did it a bit yesterday I suppose.

Saturday, August 29, 2009

Count Down

It's almost party time, and we're not almost ready. But we are getting close. Aidan is excited. Here he is helping with set-up.

Friday, August 28, 2009


Whatever caused the fever seems to have passed. Aidan is brighter and eating a little better (though still not enough). His dad being here has definitely contributed to the upswing in his spirits. He also is looking forward to his party for which we are busy preparing. Today's picture is one we used for his invitation (thanks Megan, Stacey and Nate). He is next to Gromit in a rocket. Thumbs up lad.

Thursday, August 27, 2009

Much Ado About Nothing

Aidan had a fever, when was it? Tuesday. Because of his immune status, he had to be evaluated (6:30 PM Wednesday). Heart rate was elevated (due to dehydration) and abdomen was tender, so he had to go to the ER for blood work and x-rays (8:30 PM Wednesday). No significant findings, but with fever and compromised immune status docs felt he needed to stay for observation and fluids (admitted to hematology oncology unit at 4:00 AM Thursday). Was stable through the morning and general surgeon was not concerned about his abdomen (r/o appendicitis). Mom fit to be tied. Aidan hungry (had been NPO since ER admission). Aidan finally cleared to eat at noon Thursday. Discharged 1 PM Thursday. Safely at home 2 PM. Asleep on couch 4 PM. All in a day. Pics tomorrow.

Tuesday, August 25, 2009


Aidan definitely has a bug. Temp went up again tonight, and he started coughing. He has moments of perkiness amid signs of illness. He had a nice day with Amy: lunch out, video games at her house, then he crashed here with videos.

Aidan's dad comes to visit him tonight - a visit he's really been looking forward to.

Monday, August 24, 2009

Home Again

We're back home and back to laying low/party planning. Aidan had a great time at the beach and is looking forward to his party, but his appetite and energy have headed south. Pics are from Thursday through Sunday - party prep, swimming, hanging in Amy's car, putt-putt, and beach.

Sunday, August 23, 2009

Outside at the Beach

We made it out today! Aidan really, really wanted to play putt-putt, so we went. Mid-day. He was covered from head to toe in UV clothing with only his hands and face exposed. Hands and face were coated with clear zinc. (Radiation makes the skin much more sensitive to sun.) He ran out of steam after 9 holes, but really seemed to enjoy it in spite of being tired. Back to the house for the afternoon. Now we're headed to the beach!

Saturday, August 22, 2009

Inside at the Beach

Aidan laid low today. His fever is gone, but his energy and appetite remain low. He had periods of play (train, indoor putt-putt, water play in the tub) alternating with video, computer, and hammock time. If all goes well, tomorrow will be a beach day. Aidan has new sand toys he can't wait to use (thanks Pamela!).

Post #50

After a busy week of party prep, Aidan and I arrived in LBI this evening. He fell asleep on the way and woke up long enough to recognize where he was. Should be an interesting weekend with Hurricane Bill calling. We passed emergency signs on the island warning of dangerous surf and currents (and rip tides...). I suppose Aidan and I will have to stay dry this weekend. Just as well - he's had a bug. Low grade fever yesterday and very quiet today. Hopefully, the sea air and a restful weekend will have him back in shape.

Wednesday, August 19, 2009

Doctor, Doctor

More party work. so no pictures from yesterday. Our big activity today was seeing the pediatrician for a well child visit - something new and different. Aidan enjoyed the visit and really liked the doctor (he was worked in, so saw someone else in the practice), but was so nervous about going to see a doctor that he fell asleep waiting (a long time). He laid low after the appointment, then chose to play frisbee for blog photos.

Monday, August 17, 2009

Another Day, Another Step

Aidan had a full day skiing! Just kidding. Though a little quieter than skiing, his day was wonderful and included a visit with friends Wylie, Mavis, Megan and Laura followed by music therapy. He was smoked (like he would be after a full day of skiing) and fell asleep first in the car and then on the couch. In spite of the fatigue, he seems happier and more confident.

No pictures from today (busy planning his party - Thanks Megan and Laura!), so I'm posting one from 6 months ago. It was taken on February 15 while we were in Seven Springs, PA with Ali, Lizzie, Emily and Chris. He's just gone off a ski jump. Note his tongue and chubby cheeks (click on the picture to enlarge it). Thought it might be fun to see where he was a few months ago.

Sunday on LBI

Aidan had a full and fantastic day on LBI. Much of it he spent doing quiet things around the house (videos, DS with Allura, train construction and play, hammock time with Carole...). Then we headed to the beach for the evening where he cooked up a 7 course meal including soup, pizza, and hotdogs. In the picture above, he's roasting a marshmallow over a fire.


We headed back to the beach over Saturday night, this time LBI. On the way, we did some errands for Aidan's upcoming welcome home/belated birthday party. Aidan was very excited with our pants purchases for "The Wrong Trousers" relay. Here he is with Chris and Carole testing them out!

Friday, August 14, 2009

A Big Finish!

The day got off to a slow start with Aidan reluctant to do anything but watch videos. He was tired, and his stomach was bothering him again. Then he played some computer games. Another rest. Bubbles outside. More quiet time inside. Trampoline. Swim play date with Lily, Ruby and May (by whom he was given a Buzz Lightyear costume - thanks Bonnie). Then out to dinner where he ate 4 pieces of chicken satay! Whoa.

Thursday, August 13, 2009

A Good Day with Amy (and Dan)

Aidan seemed to really enjoy his day which was mostly spent with Amy. They managed a lunch outing, an errand and some time at her house as well as at ours. Here he is with his gaming buddy Dan (who also happens to be Amy's husband!).

3 Weeks Out

We've reached the three week mark since Aidan's last treatment. He is almost off the fentanyl and stopped the Zofran today. His intake is holding steady if not slightly improved. Though he continues to be fatigued/feel some malaise, he is open for new challenges and trying to work things out... Today his play centered on puzzles, mazes and making playdo food. Here he is at bed time reading with Nini.

Tuesday, August 11, 2009

Drumming Along

Another day, another few steps. Aidan spent a good bit of the day with Amy while I did some much needed catch-up with admin/household items. They went for a swim - his first since early June, and they went out for lunch - another first since June! Then more train time in his loft - which now has one continuous track covering most of the surface area. He fits fine. For the rest of us, it's a tight squeeze. Between those activities and waking up early (no more adolescent schedule!) he was pretty well smoked, so the rest of the day was mostly quiet (i.e., time spent with electronic devices). Except, when he heard me vacuuming and wanted to help! Here is my one shot of him from today. Drumming. He slept with the drum and woke me up by pounding on it rapidly. By the time I took the video, we had worked our way downstairs and, thankfully I had had some coffee.

Monday, August 10, 2009

A Quiet Day at Home

Aidan's request for today was that we have an "inside" day (meaning a quiet day at home). It was our first "inside" day in two months and much needed. Aidan enjoyed playing with toys he has missed or hasn't had the energy for in a while. We had a nice first half of the day playing with Legos, trains (the sets in the loft), the castle, and cars. We briefly were in the house corner (see picture of Aidan driving over to my house). Mixed in we did some toy organizing as our inventory is getting out of control! Then Aidan was tired so he moved onto even quieter activities of books, videos and computer.

Another few days and we should be mostly caught up and settled in. Aidan may rebound more gradually this time as his body and spirit are still healing. (Supposedly blood counts return to normal levels more slowly after radiation than after chemo especially in a case like Aidan's where his bone marrow has already been through a lot of chemo .) He remains thin, anemic, and easily tired. On the good side, his nausea is largely resolved (still with meds), and we have begun his fentanyl taper. And bonus... with the fentanyl taper his appetite has improved!

Aidan is eager to reconnect with friends and is looking forward to his Grand Day out of the Hospital/ 5th BAA-thday Party.

Sunday, August 9, 2009


Our first weekend at home in two months. Yeah. Aidan loves being back with all of his stuff, cats and people. He's up in his loft with C & C playing with trains as I type. Earlier he (and I) rode his bike around the driveway.

Saturday, August 8, 2009

Two Days at Home

Home from the beach and keeping busy - catching up... Here are a few shots of Aidan since he's been home. Back on the trampoline and visiting with Amy and her sister Amanda.

Thursday, August 6, 2009

Home at Last

We made it!

Going Home

Aidan, Ali and Lizzie get one last snowball.

Aidan honed his growl while at NIH. Here he is with Ali, Lizzie and Uncle Chris growling as we left the beach!

Wednesday, August 5, 2009

Winding Down

Aidan had a good day today. The new meds seem to be helping. No more nausea!

Our time at the beach is winding down - tomorrow we head for home. Aidan is sad to be leaving his cousins, but can't wait to get home and see his friends again.

Pic is from an evening beach outing.

Tuesday, August 4, 2009

Bucket Bath

Aidan had his first bath in 2 months! He had a blast.

He had more nausea this AM, but we have added two meds (Decadron and Zantac). Hopefully, we'll beat it tomorrow.

Monday, August 3, 2009


Nausea got the best of Aidan this morning, but he hung in, kept his meds down and by the afternoon was rockin.

Sunday, August 2, 2009

Light on the Horrizon

We arrived at the beach a week ago Sunday, and what a difference a week makes! Aidan is gaining strength and confidence by the day. He fatigues easily and still needs a lot of vegetative time (as in computer and video), but his interactions are richer, his frustration tolerance greatly improved, and his sense of humor back. Today, he made it out of the house only once - to chase down the snowball truck. That was fine though considering the storms and flash flooding. (I did make it out briefly and had to wade back to the car after my errand - pants rolled up to my knees and all.) He had a blue snowball and loved it.

Saturday, August 1, 2009


We made it today! After much time on the couch this AM, Aidan spent the late afternoon on the beach.