Saturday, June 23, 2012

What a busy week we've had!

Last Saturday was Neya's dance recital. We spent a fun afternoon and evening with nine members of our THON family who came to see the recital with us. They helped make Neya's big day extra special! Neya was beautiful, and did a great job in the recital! I'm SO proud of her!

Neya's recital portrait

6/18/12-Neya and some of our THON family

6/18/12-Neya and another special PSU student

Sunday was Father's Day, and we spent the afternoon with family and friends. We shared lots of laughs and a yummy dinner! Sunday night after the kids were asleep, I did laundry and packed some toys to take to the hospital for Collin's chemo admission.

Monday morning was Neya's first swim lesson. I had one hour from the time we got home from swimming until we had to leave for Collin's clinic appointment before admission. While I was trying to finish packing the rest of what we needed for the hospital, Collin stood in the living room yelling,"Num on Mom, I weady to go clinic!" He couldn't wait to leave! Later, when he walked into his hospital room, he looked around and said, "I yike dis woom. I yike dis bed." He was pretty happy to be there...frankly, it was kind of...weird (but I'm not complaining!)

6/18/12-Collin and his new book

6/18/12-Of course we bring Potato Heads to the hospital with us!

A close up of the Potatoes, by Collin

Overall, things went smoothly. Collin was happy despite being in the hospital, and I felt like we were staying with friends for a few days because we got to see many of the nurses we love. Collin hasn't been eating well over the last few weeks, and has lost a little weight, so we are keeping an eye on that. He had his Cytoxan (chemo) from 10-11 on Monday and Tuesday nights. Once the chemo was done, the Mesna (rescue agent) ran for 12 hours, and he was also given Lasix to flush out his system. Of course this meant his diaper had to be changed every hour overnight, but luckily our nurse was able to do it without waking him too much, so I got a little "rest." The biggest challenge was just keeping him occupied. The chemo didn't make him sick until Wednesday morning. He threw up at 3:30, and then again at 7:30 in the morning. It wasn't a lot, and didn't seem to bother him much. The worst part was that after both times, he said "I no mean to, it was a accident" like he felt bad for doing it. We came home Wednesday after lunch (despite the fact that Collin said he didn't want to go home!) and thankfully he has been feeling fine.

Thursday night we started the GCSF shots that will help Collin's bone marrow kick out lots of new white blood cells. As in the past, Bill gives the shots because I can't bring myself to do it. But Collin is handling them very well! Tonight I called him into the kitchen so I could put lidocaine cream on his leg. He came in right away even though he knew the lidocaine cream meant he was getting another shot. After I finished, he wanted to pick the bandaid that he would get after the shot. He asked if we would do the shot on the couch like we did the night before, and I asked where he wanted us to do it. He chose the couch, and when the time came, he sat right down. He said, "I don't want my shot" but he didn't try to resist at all. Neya sat next to him, got his bandaid ready, and held his hand. I cleaned the site with alcohol, held his other hand, and pinched the part of his leg where the shot would go. Then Bill gave the shot. Collin didn't make a peep until the medicine went in; it stings going in and that seems to bother him more than the needle. He whimpered for a second or two, but didn't cry, and as soon as it was over, Neya put his bandaid on and Collin said, "Yay, I did good job! I brave!" We gave him a Hershey Kiss afterwards for a job well done, and Neya asked for one too. Then she sat next to Collin and gave her Hershey Kiss to him!

Friday afternoon, Collin had his latest hearing test. He still has just the high frequency loss in his right ear. It's not affecting his speech, since he hears fine out of his left ear. The audiologist said eventually she'll want to fit him with a hearing aide, especially once he's in a classroom setting, but for now we can just focus on getting him healthy. I hope the radiation doesn't impact his hearing more, but I've been told there is a good chance it will. Time will tell, and we'll cross that bridge when we get there.

At the yardsale fundraiser in February, I met a wonderful girl, a friend of a friend, who later emailed me and asked if she could hold a Zumbathon fundraiser for us. The event was today, at a local firehouse, and it was amazing. So many generous, caring people, many of whom had not met us before today, gave their time and talents to make the day special. We continue to be humbled and extremely grateful for the love and support of those around us. Thanks to the many people who've contributed to fundraisers for us over the last few months, we have the funds to cover plane tickets, lodging, car rental, and whatever other expenses we encounter when we go to Houston for radiation. We are very blessed, and very thankful, to be able to take Collin where he needs to be without having to worry about the cost involved in getting him there. I've said this before...the words "thank you" don't seem like nearly enough. But thank you all, for the love, support, prayers, and assistance that are helping to carry us through this journey.

6/23/12-the awesome group of ladies that came to Zumba for Collin

6/23/12-THON family members who came to the Zumbathon

6/23/12-Fireman Collin got a tour of the fire trucks during the Zumbathon

6/23/12-"Driving" the ladder truck

This coming week will be another busy one; swim lessons for Neya Monday through Friday, a clinic visit one of those days and therapy appointments three of those days for Collin, and I've got to start working on making our travel arrangements. We are scheduled for a consult at MD Anderson on July 23, and after that it will be 7-10 days until they have everything ready to begin radiation. The radiation will take 6-8 weeks, so Collin, Neya, and I will be finishing out the summer in Houston. We'll also be watching Collin for a fever this coming week as his immune system crashes, and of course if that happens we'll be back in the hospital for a few days. One day at a time!

Tuesday, June 5, 2010

Collin had a very busy day today. He had speech therapy at 10 am, and then occupational therapy at 11 am. He worked very hard, and did really well in both sessions. After therapy, we had lunch in the cafeteria, and then we went to the clinic.

As of last Friday, the plan was to start five days of Temodar tonight, and then be admitted to the hospital Friday (June 8) through Sunday (June 10) for Cytoxan. However, plans have changed a bit. Since talking to me Friday afternoon, Dr. Comito spoke with the pharmacist, who recommended allowing more time between the two chemo drugs instead of having them overlap. So, Collin will start the Temodar this Friday evening, and then he'll be admitted to the hospital for the Cytoxan on Monday, June 18. He'd probably be discharged Wednesday, June 20. Then about a week later he'll likely be readmitted with a neutropenic fever.

Dr. Comito is still waiting to hear from MD Anderson as to whether they'll be willing to treat Collin. She said she doesn't think they'd turn him down unless they feel the radiation would be palliative instead of curative. I asked whether she still feels he's curable, and she said that as long as he gets the high dose of radiation, 36 Gy,* she still feels he has a chance at a complete cure. However, he will likely suffer throat pain and mucositis, as well as other GI issues, during the radiation. As close as he is to needing hearing aides now, she feels chances are good that he will need them after radiation. He will eventually need growth hormone as a result of the radiation. I don't know what the cognitive effects will be. She also said the odds of him being completely cured are not in his favor; they never have been. But certainly without radiation, he won't survive. Deep down I knew this, but it's hard, so damn hard, to hear it said. I'm terrified at the thought he won't survive this, but somehow I have to fight the fear and not let it win. I don't know how to do that. I don't know how to go on and live the rest of my life without my sweet son.

*[Up until recently, Dr. Comito had been talking about possibly doing a lower dose of radiation; however now that he has multiple new tumors, and we only have one chance to do radiation, it has become clear that a lower dose is out of the question. Also, she feels that the radiation may only take four weeks instead of six or seven. Usually the last two or three weeks of treatment are evidently just boosts (higher doses of radiation to the tumor bed), but since his tumors are in multiple places and none of them are in the original tumor bed, she doesn't know that they will be able to boost anything.]

Friday, June 1, 2012

Collin and I kicked off our day with an inpromptu trip to the grocery store for a jello breakfast this morning. The poor kid was starving, but he was only allowed clear liquids and Jello until 10 am. Unfortunately I didn't think to make sure I had Jello in the fridge ahead of time, so after Neya left for school, away we went. After that, Collin was much happier. His MRI was scheduled for noon, and thankfully they were running right on schedule. Everything went very smoothly.

Collin's oncologist called this evening after Collin's neurosurgeon had a chance to review the scan. All of the tumors enhanced much brighter this time, so they were easier to see. There isn't much change, so they're considering him "stable." However, Dr. Comito wants to be a bit more aggressive than the maintenance therapy, so we are stopping that for now, and next Tuesday Collin will start on another oral chemo (Temodar) for five days. On Friday, June 8, he'll be admitted to the hospital for the weekend for a round of Cytoxan. He'll probably come home Sunday. It should be just like the round of chemo he did just before Thanksgiving. Then his counts will drop, we'll once again do the Neupogen injections at home, and he'll most likely be re-admitted to the hospital a week later with a neutropenic fever. Of course that weekend is Neya's dance recital, but my parents will be here for it, so it'll be nice to have the extra help.

Dr. Comito will send the MRI to MD Anderson on Monday, and Collin will have another MRI in about a month. Hopefully that will show a good response to the chemo, just as he had last December following the round of chemo in November. Then probably around mid July we will head to Houston, where we will spend the rest of the summer getting radiation.

While I'm happy today's scan was stable, I'm once again overwhelmed at the thought of what lies ahead of us these next few months. Just this morning I was thinking it's time to trim Collin's hair (at least around his ears), and now tonight I realize between the chemo and the radiation, he'll lose it once again. The upcoming hospitalizations will be short, and we'll be in familiar surroundings with our favorite caregivers, but it's still stressful and tiring. Then when I think about the (at least) seven weeks away from home, family, and friends, the trip we had hoped to make to the beach, the swim lessons and dance class I had signed Neya up for, Collin's therapies that will again be put on hold, and wonder what Collin will be like after we radiate his brain and spine, I feel...sad. How much more will cancer take from us?