Saturday, October 27, 2012

In the last few days, it seems like Collin's fatigue may be turning the corner. He has been napping less (or not at all) during the day, but is still going to bed early and sleeping 12-13 hours at night. Thursday night was our trick-or-treat night, and Collin was excited to go. I expected him to just make it to a few houses and then want to come home, but he surprised me! We were out for an hour, and he enjoyed every minute of it! We did have to put him into his stroller after the first few minutes, but he didn't ask to go home once. After each house, he'd say, "Now what? Another house?" When we got home, he had fun looking at his candy. It was really great to see him have fun just being a kid!

This morning we had the honor of presenting the official Iron Butt Association certificates to the Guardian Knights who rode over 1000 miles in under 24 hours for Collin this past September. As always, we had a lot of fun with this great group of people. We really are blessed to have them in our lives!

The rest of this weekend we will be preparing for Sandy's arrival. Lee flooded our basement in the beginning of September of 2011. For nearly two months, our house was in a state of upheaval while the basement dried out and was repaired. The last thing that needed to be done to get the basement back together was installing new carpet. That happened on October 25 last year. The very next day was the MRI that showed Collin had relapsed (for the first time). We haven't had any down time since that storm and Collin's relapse (and really not since he was originally diagnosed in 2010). That storm last year was supposed to be the "once in a lifetime" storm, but now here comes this storm which sounds even worse. I can't handle the thought of flooding again. I am mentally and emotionally drained, and was really looking forward to having some time just to breathe after we got the great MRI results last Friday. But thanks to some other unforseen events this week, and now this approaching storm, a break is apparently not in the cards just yet. Collin is supposed to be seen in clinic and start his maintenance meds on Monday. I'm not sure if we'll even be able to get to the clinic; if we do, we have some concerns about starting Collin on a new drug in the midst of the storm, because if he has any serious reactions, it could be difficult to get to the hospital. The only thing we can do is take one day at a time, hope for the best, and never forget that things could always be worse.

Tuesday, October 23, 2012

Collin has continued to have a lot of fatigue since my last post. On Saturday October 13, we decided to make a trip up to State College to attend the THON 5K. My hope was that Collin would sleep in the car on the way there and back, and hopefully be able to have a few hours of fun in between. It was a beautiful, brisk fall day, and we were excited to see our THON students and fellow Four Diamonds Families. Unfortunately, it turned out to be too much activity for Collin; he was pretty unhappy the entire time we were there, and just kept saying he wanted to go home. Throughout last week, he has asked to go to bed around 6:00 pm, and has been sleeping eleven to twelve hours a night, as well as two to four hours during the day. When awake, he hasn't wanted to play much; he's been playing on the iPad, looking at books, or watching TV...things that don't take a lot of energy.

Last Friday, October 19, Collin had his first post-radiation MRI. To say I was anxious would be a huge understatement. The night before the MRI, I barely slept. I couldn't focus, and I couldn't turn my mind off. I wanted the results to be all clear more than I've ever wanted anything. I truly felt like I couldn't breathe. I was terrified. It was a horrible, dark place to be in. Friday morning, everything at the hospital went smoothly. Collin said he didn't want to go to the hospital to have his "pictures" taken, but when it came time for him to be put under, he sat on the table, calmly held my hand, and didn't fight the anesthesia. Finally, late Friday afternoon, we got the call. There is no evidence of any tumors in Collin's brain!! There is an area at the bottom of Collin's spine, where his original tumor had spread to in 2010, that has always been watched closely. Thankfully there are no changes in that area either!!

I can't describe the feeling of relief that we feel with this news!! We are so very thankful for this blessing, and the blessing of the love, support, and prayers of so many around us!! We will finish 2012 with cautious optimism, and renewed hope that Collin will beat this once and for all. Our fight is far from over, but it's nice to be able to breathe again. Our next step is to decide, with the help of Collin's oncologist, whether to start Collin on more maintenance drugs that will hopefully kill off any cancer cells that may be left, or just wait and watch.

Thursday, October 11, 2012

Despite being a bit nervous about getting his teeth cleaned, Collin did a great job at the dentist yesterday! He watched me first, and then when it was his turn, he climbed right up in the chair by himself and let the hygienist clean his teeth with no fuss. Best of all, he had no cavities! The dentist said he does have some staining on his teeth, and that his permanent teeth may take longer to come in. The permanent teeth may be weaker because of the effects of chemo and radiation, but he said there are things that can be done to help strengthen and protect them once they come in.

As soon as we got home from the dentist, Collin wanted to put his pjs back on. It seems his fatigue has been increasing, especially over the last few days. He had a nap after lunch, and then was asking to go to bed at 6:30 pm. I was able to get him to bed at 7:30, and he immediately fell asleep. This morning he woke up at 6:00 am, and was pretty cranky. He fell asleep for about 30 minutes around 9:50 this morning and woke up around 10:20. Then he went downstairs, climbed up on the couch, and almost immediately went back to sleep. We were planning on going out today, but I cancelled our plans because clearly Collin just needs the rest. I knew extreme fatigue was a possibility after radiation, but it still makes me sad to see my poor kiddo with absolutely no energy or desire to do anything.

Guardian Knights Motorcycle Club

As you probably know, one of the blessings we have received along Collin's journey has been the amazing kindness and support from the Guardian Knights Motorcycle Club. This past September, they held a fundraising ride, called an Iron Butt Ride, in which participants rode 1000 miles, from Harrisburg, PA to Lexington, KY and back, in 24 hours.

I had very much wanted to be there to see the riders off and to welcome them home, but it wasn't possible since Collin, Neya, and I were still in Houston when the ride took place. Today I got to read the account of the whole event, from the idea, through the planning, to the ride itself, written by Guardian Kight Rick Cagno. Once again, I am humbled by the incredible dedication and generosity of people around us. I had no idea the amount of time and effort that went into this event, and I don't know how to begin to thank John, Rick, and this wonderful group of people for all they have done for Collin and our family. Take a few minutes to read Rick's blog entry...you'll be glad you did.

http://rcagno2010.blogspot.com/p/collin-1000.html

Tuesday, October 9, 2012

Collin had his first clinic appointment back at Hershey yesterday. While I was very happy to see our social worker, nurses, and Dr. Comito, poor Collin wasn't overly thrilled to be there, as he has really had his fill of medical appointments. When we first got there, he refused to take his sunglasses and jacket off, and he wouldn't say much. As we sat in the waiting room, I said to him, "Oh good, make sure you don't smile, they don't like it when you smile here. No, no, don't do it!" Soon my teasing (and maybe some tickling) had him back to his smiling, charming self!

While we waited for Dr. Comito, Collin went to sleep on the exam table. His fatigue, along with the fact that he looked pretty pale, had us thinking that we might need to return to clinic for a blood transfusion today. When it was time to get his blood drawn, his only concern was whether he'd go home with a tubie or not. We told him the tubie would come out right after the blood draw was done, and he happily exclaimed, "I take regular bath tonight. I HATE sponge baths!" He barely flinched when his port was accessed, and later I was very happy to hear his lab results. His white count was good, his hemoglobin was still high enough that we didn't need to return for a blood transfusion, and his ANC was 3740, which means his immune system is good! The fatigue is expected following radiation, and hopefully it won't increase any more, or last for a long time.

Tomorrow Collin has his first dental cleaning. He said to me tonight, "I have go ANOTHER doctor?" As much as I hate to make him go, I know the chemo and radiation can affect the health and growth of his teeth, so it's important to get him in for regular dental check-ups. He told me he would watch me have my teeth cleaned first, and then I could watch him "be like a big boy!" I think things will go pretty smoothly; he's watched Neya have her teeth cleaned before, so it's not completely new to him, and in the end he always has a way of just handling what he has to do.

Collin's first post-radiation MRI is scheduled for the end of next week. I can tell myself that logically, with the recent chemo and the radiation, results should be good, but the fear can still be paralyzing. I keep tamping it down as much as I can so it doesn't take over, but it's hard to do. Please keep Collin in your prayers for a clear scan....I'll share the results as soon as I know them!

Sunday, October 7, 2012

We flew home one week ago today, and our homecoming was more amazing than anything we could have imagined. Our friends, the Guardian Knights, met us at the PA/MD border to escort us home. When we pulled up alongside them and got out of the car, they applauded for Collin. When we got back on the road, they rode in front of and behind us, and where necessary, they even stopped oncoming traffic to let us pass/turn. Then when we got to our house, we were greeted by more friends and neighbors. We pulled into our driveway to find it had been decorated with chalk drawings done by some of our awesome THON family. We walked into our house to find it decorated with banners, streamers, and balloons, also courtesy of our THON family. We felt very loved, and blessed that Collin received a hero's welcome home.

Our Guardian Knights

Neya & Collin admiring the driveway in the daylight

When we turned the corner into our development last Sunday night, Collin and Neya suddenly yelled at the same time, "We're home!!" Collin was excited to see his toys, and for two days he kept telling me, "I glad be home!!" Ten weeks was a long time to be away, especially for Collin and Neya. We've spent the last week getting back to our "normal" routines. Neya has started back at her school and dance class. Collin has had a quiet week at home, relaxing, with no appointments to go to. Bailey (our dog) is back home too, so we are all finally under the same roof again. I have unpacked some of what we came home with, and have made our travel arrangements for Collin's eye surgery in Houston on December 3rd. I have a lot more on my to do list, but I'm having trouble finding energy and motivation to get things done. I feel tired and burned out, and I have to figure out how to snap myself out of it.

Tomorrow we have our first clinic appointment at Penn State Hershey Children's Hospital with Collin's oncologist since coming home. Collin's counts will be checked, and we'll talk to Dr. Comito about the next step in Collin's care. I'm looking forward to seeing our care team-it's been a long time!

Collin spending the day relaxing at home, in his pjs

Thursday, September 28, 2012

On Tuesday the 18th, we had our weekly visit with Collin's oncologist at MDACC. Collin's appetite was still very small, so I asked the doctor if an appetite stimulant would help. He said it was worth a try, and prescribed a low dose of Megace to be given once a day. Collin's labs were good, and the doctor said that if the labs were good the following week, he would start Collin on one more course of chemo. He also explained that the MRI that was on the schedule for Sept. 26 was really too soon; they typically wait until four weeks after the end of radiation to do the post-treatment MRI because if the scan is done too early, there is a chance the results will be interpreted as false positive, meaning there may still be inflammation that looks like a tumor. I had also been told this by the radiation oncologist; no one knows how the MRI got on the schedule. So the scan originally scheduled for yesterday was canceled, and Collin will have his first post-radiation MRI at home on October 18.

On Wednesday the 19th, the weather was beautiful with low humidity, so on a whim I decided to take Collin and Neya downtown to the Houston Zoo. We had a good time, and our favorite part was feeding the giraffes. While we were there, the shuttle Endeavour flew over Houston (piggybacked on it's 747) on it's way to Ellington Field where it would be on display until that evening. So, since it was a once-in-a-lifetime opportunity, after we left the zoo, we drove to Ellington Field to see the shuttle. It was amazing to see!

Feeding giraffes

Neya takes a picture while Collin waits patiently

Visiting the Space Shuttle (Collin was sleeping)

On Saturday the 22nd, I went out to lunch with a childhood friend who happens to live in Houston. She brought gifts for the kids, which included cups with straws from the Disney Store. Collin hasn't been able to drink from a straw, because the weakness on the right side of his face prevents him from closing his lips enough to get a good seal around the straw. But when he saw the cup, he wanted to try, so I cleaned it, filled it, and put it to his lips. I held the right side of his lips closed, and told him to suck like he was sucking a spaghetti noodle. Low and behold, he did it!! Then, I stopped holding his lips, and he was able to drink from the straw all by himself!! It may not seem like a big deal, but Collin has wanted to be able to do this for quite a while. He was very proud of himself, and kept saying, "I'm like a big boy now!!" It was very exciting, and I can't wait to show his speech therapist!!

On Monday the 24th, Bill flew back down to be with us this week. We have really missed him, and were so excited when he finally arrived!

This past Tuesday (Sept. 25), we were again gone for 11 hours, driving, waiting, and having our last appointments at the Medical Center. We had our last visit with the oncologist. We've noticed some improvement in Collin's appetite since starting on the Megace, and I was happy to see that he had gained a few ounces since starting it a week ago. The burned skin on his head and back is mostly healed. His labs were good, but after speaking with Collin's oncologist in Hershey, the oncologist in Houston told us Collin would not be starting the last course of chemo as we expected. Since Collin has had enough chemo in the last two years to be at risk for a secondary cancer like leukemia, they decided to try something else instead. He explained that sometimes with radiation, there are cancer cells that are only partially damaged from radiation, and as the body begins to heal and grow again after treatment, these cells can begin to grow again, and the cancer comes back. So, they will put Collin on two drugs that will help prevent this. One drug, called Vorinostat, will help kill cancer cells that are only partially damaged before they have a chance to start growing again. The other drug, called Accutane, helps convert damaged cells into healthy cells. Collin has been on Accutane before, and tolerated it pretty well. These two drugs will be started sometime after we return home.

Collin had his post-radiation audiogram Tuesday as well. The results were mostly consistent with past hearing tests; there is high frequency hearing loss in Collin's right ear, but his left ear is still good. Collin will need a hearing aide in his right ear when he gets older and starts school, so that he can adequately hear when there is background noise that would make it too difficult for him to hear.

Collin at his audiogram

Collin at his audiogram

Our final visit Tuesday was a follow-up with the pediatric neuro-ophthalmologist at Texas Children's Hospital. She said there was definite improvement in the surface of Collin's right eye thanks to the lubricating drops and ointment. However, the vision in Collin's right eye is still very bad. I used to be very good about patching his good eye, which forces his brain to listen to the bad eye, but I let patching go by the wayside while dealing with his relapses. My neglect has hurt his vision. So I will begin patching him again, starting with five minutes and working up to two hours a day. Hopefully his brain will begin to listen to that eye again. The ophthalmologist was discussing the surgery she will do to straighten his eyes in 2-3 months, and was trying to figure out what she can do to help the vertical nystagmus as well. Collin's eyes bob up and down constantly, and the opthalmologist feels this is related to the damage in the cerebellum where Collin's original tumor was; that area of the brain controls things like balance and eye movement. She thinks she can tighten the muscles behind the eyes to cut down on the vertical bobbing at the same time she does the procedure to straighten Collin's eyes. She then referred us to an Ophthalmic Plastic, Lacrimal, and Orbital Surgeon at Baylor College of Medicine. She wanted us to consult with him about either a permanent tarsorraphy to the right eye (where a portion of the top and bottom eyelids are sewn together to make the opening of the eye smaller) or a gold weight (a small gold weight that is surgically implanted into the eyelid to help the eyelid close all the way). The hope is that one of these procedures would help Collin's right eye feel more comfortable and keep it from drying out so much. Collin spends most of his awake time holding his right eye closed, probably because it is just so uncomfortable from not closing.

So, we went back to the Medical Center one last time Wednesday afternoon to consult with the Ophthalmic Plastic Surgeon at BCM before we fly home. He observed Collin's eyes for a few minutes, and feels the gold weight will be better for Collin from an aesthetic standpoint. It would be a 1.2 g weight, and it uses gravity to help the eyelid close. He said Collin's eye will look a bit droopy compared to his left eye, but right now the right eye is open wider than the the left eye, so they aren't symmetrical anyway. He could do the procedure about a month after Collin's eyes are straightened. So as it looks right now, Collin is tentatively scheduled for the surgery to straighten his eyes on December 3; and then early in the new year the gold weight can be implanted. Collin and I will fly back down to Houston for a week or so for both of those surgeries, which will be performed at TCH.

As our time in Houston comes to a close, I have mixed emotions. We have received great care here, and there are many people I will miss. At the same time, we are eager to get home and back to "normal." We are flying home Sunday the 30th, so I'll be spending the next few days packing our suitcases and the boxes we'll need to mail home. Interestingly, the very reason we've been unable to come visit my parents here in Houston in the last few years (Collin's cancer) is now the thing that will bring us back regularly.