Tuesday, December 4, 2012

Collin's first round of maintenance medication, which was given for two weeks in November, went well. It didn't make him sick to his stomach, and his blood counts weren't hit hard like they could have been. The biggest side effect was the dry skin from the Accutane. His second round was postponed for the eye surgery that was scheduled for the beginning of this month. Collin and I flew to Houston on Thursday November 30, the surgery took place yesterday, and we will fly back home to Harrisburg on Saturday December 8. Overall, yesterday's surgery went well; it just didn't go quite as planned.

Just to review some background...In 2010 as a result of either his brain surgery or hydrocephalus, some of the nerves that control Collin's eyes and facial muscles were damaged, which caused the right side of his face to be paralyzed and his eyes to turn in (looking crossed). Back in 2011, Collin had the first surgery to try to straighten his eyes. At that time, the ophthalmologist (Dr. Weinstein) tightened the muscles on the outside of each of the eyeballs, and injected botox into the inner muscles of each eyeball to help those muscles relax so the outer muscles could more easily pull the eyes outward. There was an immediate change in Collin's eyes, but over time they turned back in, although not as far as they originally were. Dr. Weinstein then recommended a second procedure, where he would loosen the same inside muscles that he had injected the botox into, to help the eyes turn out again. He also recommended a third procedure where he would move the muscles from the top and bottom of the eyes, which move the eyes up and down, to the outside of the eyeballs, to further help the weak outer muscles pull the eyes outward.

Before proceding with a second and third surgery, we took Collin back to the opthalmologist (Dr. Frankel) who found the pressure on his optic nerve which lead to the brain tumor diagnosis in 2010, to get a second opinion. He didn't feel the second procedure would benefit Collin at all, but did agree with the third recommended procedure. However, he said we would need to find a skilled surgeon to do the procedure. Then Collin relapsed, and scheduling more eye surgery was put on hold.

So over this past summer, while we were in Houston for Collin's proton radiation, we saw an ophthalmologist (Dr. Edmond) who also agreed that the third procedure would be best way to go. Furthermore, she had done the procedure many times before, so we felt comfortable having her do the surgery. She also wanted to do something to lessen the vertical nystagmus, or bobbing up and down of the eyes, that is also a result of the nerve damage. That is how we ended up back in Houston this week for Collin's eye surgery.

We left the house yesterday at 4:30 am to be at Texas Children's Hospital by 6:00 am for the 7:30 surgery. Before the surgery, he was given a pair of TCH pajamas to put on for the surgery, and then take home. He was so excited about this, and he couldn't wait to "tell Neya and Daddy about my new jammies!" I left Collin asleep in the operating room around 7:45, and he was finished around 9:45. Dr. Edmond's plan was to move half of the muscles from the top and bottom of the right eye to the outer edge of the eye to pull it outward, and then tighten the remaining muscle below each eye to lessen the vertical bobbing. During the surgery however, she found that the inner muscle of the right eye was extremely tight, tighter than she has ever seen before. This happened because the outer muscle of the eye was so weak that it just couldn't counteract the inner muscle. So, she ended up loosening the inner muscle, which enabled the eye to straighten pretty well right away; then she tigtened the muscles below each eye. She didn't move any muscles to the outside of the right eye as originally planned, because she didn't want him to go from looking at his nose to looking at his ear. If any further adjustments need to be made, they can be done at a future date.

Collin woke from anesthesia fairly quickly and calmly, but was very drowsy due to a dose of morphine. We stayed by his side and let him sleep for a few hours in recovery before taking him home. He held onto my hand for the whole time, and would periodically ask, "Are you still here with me, Mom?" Once we got him home, he rested on the couch, and ate soup and crackers, which thankfully he kept down.

Collin's eyes were swollen closed after the surgery. This morning his right eye, which is more swollen than the left eye since it had more done to it, was stuck closed. It took me quite some time this morning to clean it up so that it could open. Poor Collin just cried the whole time, because he is understandably anxious when anyone touches his eyes. He is on some Tylenol with Codeine for pain, and antibiotic eye drops to prevent infection. Today I've also applied some cool compresses to help any discomfort and reduce swelling. As the day has gone on, his right eye has opened some more, and from what I can see, his eye looks more centered. The vertical nystagmus in the left eye does seem greatly improved. We will follow-up with Dr. Edmond Thursday. As usual, Collin has been a brave trooper, and is in good spirits.

Wednesday, November 14, 2012

I'm happy to report that despite our worry and subsequent preparation for Sandy, we had no flooding or damage. Surprisingly, we didn't even lose power. Our hearts and prayers go out to all of those who lost so much as a result of the storm.

This two and a half year journey through valleys of despair and peaks of joy and hope has been mentally and emotionally exhausting. Ever since returning from Houston, I had been feeling worn out, and was having trouble finding energy to do even the most basic household tasks. After receiving the great MRI results, and once we were sure our basement wouldn't flood as it had the year before, I finally worked up the motivation to put the basement, and the rest of the house, back in order. As I moved things back into the basement, I used the opportunity to go through things again to see if there was anything we didn't need anymore. I've noticed that in the periods of time when Collin is stable and doing well, I have this need to simplify and organize; it's almost as if I'm trying to get things back in order in preparation for the next period of time when they could fall apart again. The scan in October was good, so that means I have three months before the next scan that could potentially turn it all upside down again. It's not like I'm expecting to get bad news in January, it's just that we've heard "no evidence of disease" before, only to have the next scan show relapse and send us into a tailspin. It's happened twice, and it is extremely difficult to let go of the fear of it happening again that lurks in the shadows. Anyway, I'm finally starting to feel like I'm back on my feet again, and that hopefully life will soon be more "normal" again.

Collin is doing very well. His fatigue continues to improve, and he has a renewed interest in playing. He is great company and a lot of fun to be around every day. He finds humor in things, and keeps me laughing. He is loving and gentle and sweet. I've noticed that he can be very reserved around other kids his age, probably because he's never had much of an opportunity to be around kids other than his sister and a few family friends. In the new year, I will try to get him involved in some social activities with other kids so he can make some friends his own age. I will also get him back into his therapies so he can continue to make progress.

I started Collin back on the appetite stimulant Megace, because he hasn't regained any of the weight that he lost over the summer. He is also finishing up his first round of maintenance medication, which consists of two weeks of two medications, and then two weeks off before starting them again. He could do up to twelve rounds like that. The first medication is cis-retinoic acid, aka Accutane, which he has been on before. The Accutane dries his skin out, so I use moisturizer and chapstick to try to lessen the dry, flaky skin. The second medication is Vorinostat, which he has never had before. Thankfully he doesn't seem to have experienced any side effects from this drug so far, but it can lower his platelet count and his immune system, so we go to clinic every week to check his blood counts. Since his eye surgery is coming up after Thanksgiving, we will wait for a few weeks after the eye surgery to start the second round of maintenance medication so that nothing interferes with his post-surgery healing.

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.

Sunday, September 16, 2012

I can't believe it's been two weeks since my last update. Ugh, there are just never enough hours in the day!

On Friday, September 7, Collin's radiation appointment was earlier in the day, so I had hoped we would be finished early and be able to get an early start on the weekend. Blood had been drawn the day before, but I expected his labwork to be fine. Unfortunately though, that wasn't quite the case; his hemoglobin had dropped to 9.5, so after radiation on Friday, we had to go to the clinic for a blood transfusion. We didn't leave clinic until around 5:30 that evening, so by the time we got home, we had been out of the house for eleven hours again. So much for getting done early!

Collin gets blood

When we had our last "weekly see" with the radiation oncologist on Monday (Sept. 10), she said that overall, Collin had handled the radiation very well. His skin is not as red, but it is dry and peeling now. It's healing though, so that's the important thing. Collin has seemed more tired recently, and it is normal for fatigue to set in towards the end of or following radiation. Some kids need to go to bed earlier or have a nap during the day because of "radiation somnolence;" others sleep 14-16 hours a day. Only time will tell if, or to what degree, this will affect Collin.

On Tuesday, September 11, after Collin's radiation session was finished, I was talking to another mom before we left. One of the radiation techs came out to me and said that according to the computer, that had been Collin's final session. I had expected his final session to be two days later, on Thursday, since that's what had been on the schedule. Evidently, the doctor's order was for a total of 28 sessions, but whoever makes the schedule wasn't aware of this and had scheduled him for 30 sessions. Whenever someone finishes their proton therapy, they "graduate" and ring a gong in the hallway. We expected Thursday to be Collin's last session and we planned to make a big deal of it; my dad even took off work Thursday to come watch Collin ring the gong. So, since we and the staff expected Thursday to be Collin's last day, I decided we would return to the Proton Center Thursday and celebrate Collin's "graduation" then, as we had originally expected to do.

Collin with some of the radiation team

After leaving the Proton center Tuesday, we went to the clinic for our weekly visit with the oncologist. Collin's counts were looking good after the blood transfusion the week before. The oncologist will monitor Collin's counts over the next two weeks, and if they continue to be stable, he will start Collin on one more course of chemo on the 25th, right before we return home. It will consist of ten days of oral chemo, and two days of IV chemo given in the hospital. That means that at the end of the week we return home, Collin will be admitted to Hershey for the two days of IV chemo. Then of course about a week later, we'll be watching closely for a fever and hoping for no infections.

Thursday morning, Collin, Neya, my parents and I drove to the Medical Center. We had to first go to the clinic so blood could be drawn for labs for an appointment later in the day. Then we drove to the Proton Center for Collin's graduation. Kelly, the child life counselor, had a wagon of new toys, and Collin got to pick three gifts. Then he tried to ring the gong, and we all applauded for him. After he rang it, I helped him ring it again a little louder. He was also given some balloons. The staff are very caring at the Proton Center, and they really make each and every patient feel special.

Collin and his graduation gifts

Collin rings the gong

Collin, Mommy, and Neya

After Collin's graduation ceremony, we drove back to the main hospital to go back to the clinic. Throughout our time here, Collin has had visits with many different kinds of doctors, who have established a baseline against which he can be evaluated over time to see if/how the radiation has affected him. Thursday Collin was evaluated by a pediatric endocrinologist. She reviewed with us the things that Collin will have to be monitored for throughout his adolesence and into adulthood, and recommends that he sees an endocrinologist every six months.

-We will have to monitor certain blood levels to determine if he needs growth hormone; typically kids who've gone through radiation to the brian eventually need to take growth hormone injections throughout the rest of their lives because the radiation damages the pituitary gland. Typically, kids who've had radiation therapy are expected to be about 2.5 inches shorter than they would have been without radiation. According to the endocrinologist's calculations, Collin's expected height is now 68 inches.

-We will have to monitor Collin for something called precocious puberty. Typically boys go through puberty between the ages of 9 and 14 (it's 8 and 13 for girls), but kids who've had radiation to the brain, which can damage the endocrine system (particularly the hypothalamus and pituitary glands), can begin puberty at a very early age. If this happens, or a child is not mentally or emotionally ready for puberty due to cognitive damage from radiation even if they are at the right chronological age for puberty, there are medications that can be given to temporarily stop puberty. The endocrinologist said Collin is also at risk for precocious puberty because he had hydrocephalus.

-Collin will need to be monitored for hypothyroidism. Since he had radiation to his brain and spine, Collin's thyroid could have been damaged by the radiation. Symptoms of hypothyroidism include fatigue, dry/brittle skin/hair, constipation, and intolerance to cold. Hypothyroidism can be treated with medication.

-Diabetes insipidus can also be caused by damage to the hypothalamus and/or pituitary gland. There can be a problem with the manufacturing or storage of a certain hormone which causes the kidneys to have difficulty conserving water as they filter blood. Symptoms of DI include excessive thirst and urination, and can be treated with medication.

-The endocrinologist also recommended that Collin be monitored for adrenal insufficiency, although she doesn't think it is likely to be an issue.

Finally last week, I had a phone consult with the pediatric neuro-psychologist who reviewed Collin's neuro-cognitive tests with me on Friday. Overall, Collin's test results were pretty good. In most areas tested, Collin was either average or slightly above average for his age. There was one area that Collin came out slightly below average for his age, but the doctor felt this was more due to physical issues (mainly vision) rather than cognitive deficits. These tests, along with the others done by the endocrinologist, pediatric neuro-ophthalmologist, etc., will be repeated every year when we return to MD Anderson for follow-up visits, to monitor the effects of radiation.

We are looking forward to Bill's arrival on September 24. That week will be busy with some final doctors' appointments and a post-treatment MRI. Then we will all fly home on Sunday September 30.

Friday, August 31, 2012

Last week the oncologist had talked about starting the next course of chemo, but then we found out that Collin's platelet count was too low. This week, we found out that his counts had gone up on their own, but Dr. Vats felt that doing the chemo right now during radiation would hit Collin's counts too hard. Dr. Comito agreed; we don't want Collin to become dependent on weekly transfusions. Plus each time we give him more chemo, we increase his chance of developing a secondary cancer like leukemia. So we will wait until after the radiation is complete, see what the post radiation MRI shows, and decide whether to do the chemo or go back on maintenance therapy.

Wednesday was Collin's final session of full craniospinal radiation, and Thursday he started the first of 10 sessions of what's called a boost. Now, instead of getting a consistent dose of 36gy to his entire brain and spine, he will be getting a higher dose of 54gy to certain areas of his brain only, where the new tumors had grown. His last boost will be on September 13, and then the radiation will be done. Overall, Collin seems to be handling the radiation pretty well...he hasn't been nauseous or vomitted in a while, he doesn't have any mouth sores, throat pain, etc. but the skin along his spine, the back of his neck, and especially on his head is red and looks sunburned. There are even small areas on his ears and head that look blistered. Thankfully they don't seem to be causing him any pain, but I'm putting aloe all over his head and ears to help his skin heal.

This week, Neya would have started third grade if we were home. I feel bad that she is missing out on being back at school, and with her friends, but I don't regret keeping her and Collin together for the rest of his treatment. I just hate that we've had to make the decision in the first place. She has been journaling, reading, and working on math and spelling with my mom while Collin and I are at his appointments. Thankfully her teacher got some of her schoolwork together and Bill has sent it down, so she will have that to work on as well and she won't get behind.

We had a great, but way too short, visit with Bill, who flew home Tuesday. Collin doesn't have radiation on Monday (Labor Day), so he has a three day weekend during which he can eat whenever he wants and take regular baths. On our way home this afternoon, he said, "My tubie gone. No more sponge bath! Yay, me!!!" I'm hoping to catch up on email, thank you notes, etc., and just having some down time this weekend. We're coming into the home stretch, and are looking forward to getting home and having the four of us together under one roof again. It may sound strange, but as much as I'm looking forward to the end of Collin's treatment, I am also very apprehensive at the same time. Historically Collin's cancer has responded well to treatment, but then comes back. When I think of the upcoming MRI, and the ones that will follow, I feel sick to my stomach. If the cancer returns after the radiation, I don't know what will be left to try. I'm really struggling with not letting fear get the best of me.

Friday, August 24, 2012

I can't believe another week has flown by; of course it's been another busy one. I really had no idea our schedule was going to be this intense!

Monday we had our "Weekly See" with the radiation oncologist, which is basically a quick weekly check-up. Overall, Collin seems to be handling the radiation well. He's not feeling sick, hasn't thrown up in a while, doesn't complain of his throat or anything else hurting, and doesn't seem to have much of a decrease in his energy level. He did lose a bit more weight though; according to the scale at the Proton Center, his weight went from 15.3k on Aug. 13 to 13.9k on Aug. 20. That's a little over 3 lbs in one week. I think he may have had his shoes on when he was weighed on the 13th, but his shoes certainly don't weigh anywhere close to 3lbs! It can be tough to get enough food into him during the week. Most of his radiation treatments are scheduled in the afternoon, and since he's put to sleep for each treatment and can't eat for the eight hours beforehand, he basically misses breakfast and lunch five days a week. Then, when he wakes up from anesthesia, his moods vary. Some days he wakes up happy and will eat something right away; other days he is still groggy and grumpy when he wakes up, and won't eat anything. Then when we get home, and he may or may not be interested in dinner, but even if he is, he usually doesn't eat much. I touched base with the nutritionist, but other than one or two suggestions, she feels we're doing everything we can to get him to eat; we just have to keep at it. Whatever he asks for, we'll give to him, even if it's not the most nutritious thing for him.

Tuesday morning we had a clinic visit with the oncologist. Ironically their scale showed Collin was up almost a quarter of a pound in a week. I expected that Collin would need more platelets, because he seemed to be bruising very easily. I was surprised when the labs from the day before showed that his platelets had dropped, but not low enough to need a platelet transfusion yet. The labs also showed that his hemoglobin had dropped to 8.3, which meant he needed a blood transfusion asap to get his hemoglobin back up to at least 10. The trick was fitting it into our schedule. A transfusion of packed red blood cells usually takes 3-4 hours, but there wasn't enough time in our schedule Tuesday or Wednesday to fit it in (radiation treatment times for the week are pretty much set in stone). In the end, we squeezed a transfusion in that day before his radiation treatment; he only got about half the blood because that's all there was time for, but at least it was better than nothing. His labs would be checked again in the middle of the week, and another transfusion could be more easily scheduled at the end of the week if it was needed. The oncologist had planned to start another course of chemo Tuesday, but even though Collin's platelets were not low enough to warrant a transfusion, they were too low to start the chemo. Hopefully they will be higher next week.

Wednesday was the longest day of the week; we were gone for nearly 11 hours that day! First, we had an appointment with the pediatric neuro-ophthalmologist we were referred to. We were able to get a quick appointment date due to a cancelation in their schedule, which is why we couldn't easily change the appointment for anything. The doctor was excellent, and I left after the appointment crying tears of relief and happiness. After the surgery to straighten Collin's eyes in 2011 didn't work, that ophthalmologist recommended two more surgeries. Before making any decisions, we took Collin back to the original ophthalmologist who sent us for the original MRI in 2010 for a second opinion. He disagreed with the second surgery that the other eye doctor wanted to do, but agreed with the need for the third surgery. However, he was not able to do it himself. Well, the ophthalmologist we saw Wednesday agrees with the original ophthalmologist, AND can do the surgery. She also knows of another specialized doctor who can actually insert a tiny weight into Collin's right eyelid to help it close all the way! Those two surgeries would help Collin's eyes so much!! So the plan right now is for me to really lubricate Collin's right eye for the next month. Since his right eye doesn't close all the way and I have not been good about putting drops in it, it is extremely dry and he cannot see very well out of it. She feels that some of the vision in the right eye will improve if the dryness is decreased, so I'm now putting a drop in the eye every hour while Collin is awake, and putting ointment in the eye at night when he is asleep. Then we will see her again in about a month, after Collin is done with radiation, and we can schedule the surgery to straighten his eyes. Depending on when the surgery can be scheduled, Collin and I can either stay here a little longer, or fly back down for it. After the eyes are straightened, we can look into having the tiny weight put into his eyelid.

So, after an early start Wednesday to see the eye doctor and spending a few hours in her office, we headed across Houston to the Proton Center for Collin's 2pm radiation appointment (which was #15, the halfway point of his treatment!). However, part of the gantry wasn't working, so they had people there trying to repair it. By the time everything was back up and running, it was over two hours after Collin's appointment time, and there were still two patients before him. One of the patients does her radiation treatments without anesthesia, so in an effort to not keep Collin waiting any longer, she was given the choice of coming later, or skipping her appointment. I guess the other patient skipped their appointment too, because once the machine was fixed, they treated Collin right away. Since we ended up spending about 5 hours at the Proton Center that day, we got home pretty late. Thankfully, Collin handled the delay without one complaint, even though he must have been starving! He was quite happy to spend a few extra hours playing in the playroom!

Blood was taken at the Proton Center Wednesday afternoon to check Collin's labs, and he was tentatively scheduled for a blood and/or platelet transfusion at the clinic Thursday morning before his radiation treatment in the afternoon. Thankfully his hemoglobin had increased to just over 10, and his platelets had increased a little on their own (although still not enough to start chemo), so we finally caught a break and didn't need to head downtown early for any transfusions. Thursday evening Bill arrived for a few days, and we were all very excited to see him! Today, Bill finally got to see the gantry, learn a little bit about how it works, and see the control room. It is really quite fascinating, but that will be a blog post for another time. Collin is very happy that his port is de-accessed for the weekend; no tubies means no sponge bath! Poor Collin has been talking all week about when his tubie comes out and he can take a regular bath; he truly does find joy in the smallest things the rest of us take for granted! This weekend, we're just going to have some fun, relaxing time together as a family!

Wednesday, August 15, 2012

As you can imagine, by the time I get home each day, eat dinner, and get Neya and Collin to bed, I am exhausted and have been going to bed as well. Then, at the hospital and proton center, I haven't been able to connect to the internet since Saturday, so that's why it has taken so long to get these updates posted.

Collin had his 9th radiation treatment yesterday. I have been talking to the Child Life counselor, who is a wealth of good information. Collin has been asking questions about radiation, and I've been answering them the best I can in a way I think he can understand. But he's also been telling me he doesn't like the medicine that puts him to sleep (propofol) and that it, or the radiation, scares him. Wendy was able to describe to me what children see and hear as they fall asleep, and this insight will help me be able to ask more specific questions about what bothers him so I can try to help him feel better about it.

After radiation yesterday, Collin was seen by the oncologist who is following him here. We had been discussing whether Collin would have any chemo during his radiation, which could help sensitize the tumors and cancer cells to the radiation. Dr. Vats spoke with Dr. Comito, and they have decided that one of the drugs they were considering would drop Collin's counts too low, and the other drug will be used as a maintenance drug for a length of time after the radiation, so they don't want him to develop a toxicity to it by using it now. Instead, towards the end of the course of radiation, Collin will do another round of chemo like the last three he has done, consisting of ten days of oral chemo, and then a short inpatient stay for Cytoxan. I am unsure whether this round of chemo will be completed while we are still here in Houston, or after we return home.

Last night out of the blue as we were sitting in church, Collin's nose started bleeding. It bled on and off for about an hour, and while we were holding tissues under his nose, Collin became very drowsy and difficult to rouse. I called the after hours emergency number because I was concerned that the bleeding wasn't stopping, and that he was becoming lethargic. The covering resident spoke to the fellow, and although Collin's platelet level was fine according to the previous day's labs, he advised us to take Collin to the nearest emergency department to have him evaluated. By the time we got Collin into the car, the bleeding stopped, and he was his normal self. In the end we decided that he was just tired, and had been falling asleep because he finally relaxed when we made him sit still, so we decided not to go to the emergency department unless the bleeding started again over night. Thankfully it didn't!

Today while Collin was having his radiation treatment, I was talking with a mother who is also having radiation to her brain. I have talked with her a few times, and she has described some of the side effects she has has experienced during radiation. I told her about Collin's nosebleed last night, and she told me how the radiation makes her nose burn and feel very dried out. Her eyes and mouth are also very dry from the radiation, so she uses saline nasal spray, eyedrops, and sugar free candy throughout the day. Tonight I used saline nasal spray on Collin, and although he screamed when I gave it to him, when I was done he said, "That feels better. That's not so bad." I wonder if he'll remember that the next time I give it to him?

Monday, August 13, 2012

This morning when I woke up, I went to change Collin's diaper, and found out it had leaked, so I had to get him and the bed cleaned up and changed. In the process, his IV line got caught somewhere (I think in the siderail) and pulled out of his port. So the line had to be taken out, his chest had to be numbed, and his port had to be reaccessed with a new line. I felt horrible, because it caused Collin enough pain that he was screaming. Thankfully as soon as the line was taken all the way out, he felt a lot better, and he didn't even cry when I re-numbed the area and the new line was put in.

Since Collin was still inpatient this morning, arrangements were made for an ambulance transport over to the Proton Center for his radiation treatment. I told Collin it would be an adventure, and he was quite excited. He eagerly rode on the stretcher, and seemed to enjoy the whole experience. Of course once we got to the Proton Center, he couldn't get to the playroom fast enough! After his radiation, he woke up in a good mood, and was very happy to return to the playroom to wait for the ambulance to take us back to the hospital. He was still a bit loopy from the anesthesia, and was so funny on the ride back! The ambulance crews were great with Collin, and seemed to get a kick out of him.

Collin enjoying his ride on the stretcher to the ambulance

The ambulance that transported Collin between the hospital & proton center

Collin in the ambulance

Loopy Collin chillin in the ambulance after radiation

When we got back to the hospital, we learned that his cultures were still negative, which meant we could go home. Collin's blood counts are also high enough that I can stop giving him the G-CSF shots! I ordered a late lunch for us (at 2:30) before we left, since neither of us had eaten yet (MD Anderson has room service for all meals, so you pick what you want from their menu, call it in, and they bring it to the room. They will bring orders for the patient and guests, so it's great because I don't have to leave Collin by himself to get myself something to eat). The ride home was quite...an adventure.

We were coming home during rush hour, so there was quite a lot of traffic and it was moving pretty slowly. In the lane next to me, there was a guy riding a sporty motorcycle, going a bit faster than he should have, weaving his bike back and forth in his lane, just being careless (in my humble opinion). All of a sudden, he had to brake hard to avoid running into the car in front of him, his back tire slid out from under him, and he and his bike wiped out, right there near the front of me. Thankfully traffic was going slow enough that we could easily stop without hitting him! He got right up, I stopped next to him, and rolled down my window to ask if he was ok. He said he was, and got his bike off to the side of the road. He was wearing shorts and a t-shirt (so I'm sure he had a nasty case of road rash), and no helmet. I hope he realizes how lucky he was today, because if traffic was going any faster, I or the car to my right would have hit him after he fell. Then, a little while later as I neared the exit I needed, I noticed quite a lot of smoke up ahead. As I got closer, I could tell it was coming from the road, and figured it was a car fire. As it turned out, the grass between the highway and my exit lane was on fire, so when I stopped at the traffic light, I called 911. Luckily, they already knew about it and had a fire truck on it's way. Thankfully it wasn't a burning car and no one was hurt!

Sunday, August 12, 2012

I was looking forward to a relaxed weekend, but it wasn't meant to be this weekend. Saturday morning I went to get my haircut. When my mom and I left, Collin was fine. When we got home an hour and a half later, my dad said he had taken Collin's temperature because he had thrown up; the first time it was 101, and the second time it was 102. I took it again, and it had climbed to 102.5, so I immediately called the hospital. We loaded our stuff into the car, and off we went to the MD Anderson Emergency Center. My adrenaline was high, because I know how quickly things can happen, and we're not a quick ten minutes away from the hospital like we are at home. Thankfully we got there without Collin getting worse. They took blood for cultures, started him on broad spectrum antibiotics, and admitted him to the pediatric floor. He was tentatively scheduled to have a platelet transfusion Monday afternoon, but his level was significantly lower than it was Thursday, so he got platelets Saturday evening. I also had to give him another G-CSF shot because his white count was still very low. By the end of the day, Collin's fever was down to normal, he was keeping food down, and was clearly feeling better.

Collin in the emergency center

Collin sleeping while getting antibiotics

So today, Collin will continue to have his antibiotics. Tomorrow he will be transported via ambulance to the Proton Center for his radiation treatment. The doctor said this morning that if the cultures are still negative by tonight or tomorrow, and Collin's counts come up enough, he may be discharged later tomorrow after radiation. Fingers crossed!

Friday, August 10, 2012

This week has been so busy that it's flown by...I can't believe it's Friday! Our schedule is grueling, and it's probably not helped by the fact that I've chosen to drive back and forth for now-it certainly takes up more of my time and adds to my exhaustion. But it's a trade-off; in return for driving back and forth, Collin and I get to see Neya every day, and have is family support and help when we get home. So the drive is worth it even though it can be difficult. It's a good thing my perspective has been changed over the last few years, and a lot of things don't bother me the way they used to. Traffic can be unbelievable at certain times of the day, but I'm not letting it get to me.

Radiation seems to be going pretty well. So far, Collin doesn't seem to be feeling too sick from it. Sunday he threw up without warning as he finished eating his dinner, and Tuesday it happened again (that time it was in the hospital cafeteria after a very long day...I'll spare you the details, but let me just say it was NOT fun!) I've started giving him Zofran every 8 hours, which seems to be helping. I don't know if these incidents were related to the chemo he recently finished, or the radiation, but I'm very glad it's only been a few times! Collin asks me questions every day about radiation, such as "Why I need radiation, Mommy?", "I have more radiation tomorrow?", "Why I go to sleep for radiation?" and "I eat after radiation?" He tells me he doesn't like taking the medicine that makes him go to sleep, and sometimes he tells me he's afraid. I can't even describe how it feels to hear him say that; it breaks my heart. I've seen him put to sleep countless times, but it's still unnerving. And to see him positioned on the gantry, with the mask over his face and bolted to the table...it really looks barbaric. But the radiation staff are amazing, wonderful people, and they take great care of Collin, so I know he's in good hands.

Collin's Radiation Mask

Collin needed another blood transfusion Tuesday because his hemoglobin had again dipped below 10. Then because his white blood cell count had gone so low, meaning his immune system is basically non-existant, I had to start giving him the G-CSF (neupogen) shots. At home, Bill gives the shots, but since he's back in PA, I have to give them. They have gone amazingly well, and Collin hasn't cried at all during them (except when he and Neya fight over who gets to put on the band-aid!) I feel much more confident giving the shots now than I have in the past.

Sunday, August 5, 2012

Monday we met with the pediatric oncologist who will be following Collin while we are here in Houston, and learned that he was still planning on admitting Collin that day for his IV chemo. He also informed us that Collin's hemoglobin was low (it was 7.9, and needs to be at least 10), so he needed a blood transfusion that day as well. We were admitted around 3:30 Monday afternoon. They had to type and cross Collin's blood, which took hours, so his blood transfusion didn't start until 10:15 pm. The transfusion took four hours, and then Collin had to have his IV hydration for the chemo. This ran over three hours. So his chemo didn't actually start until 5:00 Tuesday morning. Once it finished at 11:00 am, the mesna (rescue agent) ran for 12 hours. The second dose of chemo started at 5:00 Wednesday morning, so the mesna wouldn't be done until 11:00 Wednesday night, so we stayed in the hospital until Thursday morning. Thankfully the hospital stay was uneventful; Collin did not get sick at all from the chemo, and I had my hands full entertaining him the whole time (which is a good problem to have!) The hospital room was comfortable, and every single member of the hospital staff was very friendly and caring.

Captain Collin

Collin trying on a new hat...yes, it was clean!

Collin napping in the hospital

Collin wearing face paint

Collin and Neya on the observation deck

We were discharged Thursday morning around 11:30, and went directly to the Proton Center for Collin's first radiation treatment which was scheduled for 1:30. At the same time Collin was being prepped for treatment, Bill was taking off on his return flight home. I was holding it together pretty well until the anesthesiologist asked "Where's Dad?" As I watched Collin be put to sleep and be positioned on the gantry, I fell apart. I wished we didn't have to put Collin through any of this, and I wished Bill could be there with me. I tried to pull myself together while I tried to eat a little lunch, but it was hard. The first treatment took about an hour and fifteen minutes. When Collin was in recovery, I went to sit with him. It took him a while to wake up, and when he did he was very groggy and cranky. He was hungry, but he just kept putting his head down and not eating when I offered him food. Finally I just got him into the car and drove home. He slept the whole way, but his mood was a bit better when he woke up. The only thing we could get him to eat that evening was some ice cream.

Friday was his second treatment. Again he couldn't have anything to eat for eight hours before the treatment. He handled it pretty well though, despite his treatment being delayed for over an hour Friday afternoon because one of the machines broke down. Thankfully he woke up much quicker and happier, and he ate a bit of lunch (at 3:30) before we got in the car to drive home. They are constantly rearranging the schedule as people begin and end treatment, and they do their best to get the younger kids scheduled early, so next week Collin's treatments will be earlier in the day. I am hopeful that will help get him back into a more normal routine for eating.

Collin making Mr. Potato Heads before radiation Friday (because, what else would Collin be doing in a playroom?)

Next week will be busy again; along with the daily radiation treatments, Collin has clinic visits and a hearing test on the schedule. With all of these different appointments, along with the drive back and forth, we'll be keeping pretty busy.

Please keep our friend Bella in your prayers. Hospice has been called in, and she's on morphine around the clock to keep her pain at bay. I can't believe that when we saw her a few weeks ago in clinic, it would be the last time we'd see her. It breaks my heart to think about what her family is going through. I hate cancer soooooo much!!!

Friday, July 27, 2012

Overall, things have gone very smoothly so far at MD Anderson. The whole medical center in downtown Houston, where MD Anderson is located, is very large and consists of many different hospitals and clinics. Things seem very organized, and we even have access to Collin's appointment schedule and records online.


Thursday we went to MD Anderson Cancer Center for the radiation consultation. We met with Dr. Mahajan, the radiation oncologist who will be overseeing Collin's radiation treatment. Collin will have 28-30 radiation treatments, under anesthesia, each one lasting about an hour, Monday through Friday, for about six weeks. The first four weeks will be radiation to his whole brain and spine (36 CGE), and the last two weeks will be a higher dose (54 Gy) "boost" delivered to the areas where the relapsed tumors currently are. Possible side effects during radiation include hair loss that may take a long time to grow back and may grow in patchy and/or a different color; sunburn-like skin irritation on the scalp and spine; nausea/vomitting; and low blood counts that may require blood transfusions. Side effects that may occur in the weeks, months, or years after radiation include shorter stature due to damage to the spine and pituitary gland; cognitive delays; hearing loss; fatigue; and secondary tumors in the brain or spine.

Today got off to an early start because Collin had to have anesthesia this afternoon for his radiation simulation at 2:30 pm. I woke him at 6:00 am so he could be finished with breakfast by 6:30. Between 6:30 and 10:30, he was only allowed 4 oz of clear liquids, and then couldn't have anything to eat or drink after 10:30. Despite not being able to eat all day, he handled it well. He was put to sleep, had a CT scan, and was fitted for the metal mesh mask that will be used to bolt his head to the table so that it cannot move during the radiation. Then when he woke up, we sat in the waiting room and fed him lunch before the drive back to my parents' house.


Originally we had planned that Collin and I would stay at Ronald McDonald House once his treatments started to reduce our commute time back and forth, especially during morning rush hour. However, so far his radiation is scheduled after lunch and the drive during that time of day hasn't been too bad, so we're going to see how it goes commuting every day. If necessary, we can always make arrangements to stay at RMH at a later date.

We had been under the impression that Collin would be admitted Monday for his IV chemo, but although we have questioned everyone we've spoken to, we have not been able to get any information about this. However, Collin's next appointment is now on Monday, with a pediatric neuro-oncologist. During our consult with Dr. Mahajan on Thursday, we had discussed whether Collin would be given any chemo during the radiation (sometimes certain chemos are given during radiation to further sensitize the tumors to the chemo). She wanted to talk with the neuro-oncologist, because Collin has already had a LOT of chemo in his short life. We also discussed how the low blood counts and possible neutropenic fever following the IV chemo could delay the start of radiation. We are now speculating that the IV chemo planned for Monday may not be given, and instead a different chemo may be given with the radiation, which is scheduled to start Thursday, August 2. I guess we'll find out Monday.

On Tuesday Collin has an appointment for neuro-cognitive testing. This will provide a baseline against which future periodic testing can be compared, to see how the radiation affects him cognitively. I also noticed on the schedule that there is a baseline hearing test scheduled in the near future. Between radiation appointments, weekly clinic appointments, and other miscellaneous appointments, our time in Houston will be pretty busy!

Tuesday, July 24, 2012

I'm sorry I haven't updated before now! The week leading up to our trip to Houston was incredibly busy, and now that we're here, I've finally had a few days to relax, which hasn't happened in quite a while. I've been taking full advantage of it! Since arriving on Friday, we've pretty much just been "home" at my parents' house, just enjoying some down time and enjoying time together as a family. Even though I'm forty years old, there is just something nice about being at my parents' house, and feeling...taken care of, safe. It's...luxurious!

A few days after Collin's MRI, Collin's oncologist at Hershey let us know that the doctors at MD Anderson agreed with her suggestion of doing another round of chemo during this time before the radiation begins, so that the tumors don't have a chance to grow. Collin is on ten days of oral chemo (Temodar & Etoposide), which started the night we arrived in Houston, and then he will be admitted to MD Anderson on July 30 for three days for IV chemo (Cytoxan). She also let us know that the cytology from the lumbar puncture on the 13th was negative, which is what we expected, but it's always a relief to hear. She was unable to take a CSF sample from the ommaya reservoir on the 13th, so we went to clinic on Tuesday the 17th for that to be done. Collin handled it like a champ as always. He was not bothered at all by the fact that a needle was being stuck in his head; he actually started to fall asleep during the procedure. What made him angry was that he had to lay flat for about 15 minutes afterwards!

The rest of the week was spent running last minute errands, finishing laundry, cleaning up the house, packing, etc. I am not a fan of traveling, and I like to leave the house clean and in order so I don't come home to a mess to clean up, so I add to my own anxiety trying to get everything done. But it always works out, and I got everything done that I wanted to or had to before we left. One of the hardest things was saying goodbye to our dog for two months. He's getting on in years, and has had some health issues over the last few months, so leaving him was extra hard. Neya and I cried as we said goodbye, and we miss him a lot. We are blessed to be able to leave him with great friends who will take excellent care of him. We are also blessed to have great friends taking care of our house for us. I managed to get our suitcases packed AND keep them under the airline weight limit! We left our house Friday morning with plenty of time to get to the airport without having to worry about getting caught in traffic and getting through security. I was a bit nervous about getting through security with liquid medication that had to be kept cold, but everything went very smoothly. The flight went well, and overall both Neya and Collin did well on the plane. Collin was asleep before we even took off, and slept for about half the flight. He was definitely ready to get off the plane by the time we landed though!

Houston has been warm and humid, and since I am always warm, I'm definitely feeling the heat! We have encountered many kind and welcoming people, from my parents' friends and neighbors to a mom on our flight who invited us to a playdate, and a lady at the grocery store who asked if she could buy Collin a hot chocolate because she just wanted to do something nice for him. We took Collin and Neya to a house not far from where my parents live that has some goats, horses, and a longhorn steer on the property, and we stood by the fence and watched them for a few minutes. Collin was amused by the goats, and made the pretty accurate observation that they sound like sheep. He also enjoyed seeing the horses when they came over to the fence, although he was a bit intimidated by their size. We picked up our rental car yesterday, found our way to the Proton Center, and toured Ronald McDonald House. This evening Bill and I are going out to dinner by ourselves, for the second time in the last two years! Our consult at the Proton Center is Thursday morning, so I will update as soon as I can after that. As always, thank you for the prayers, positive thoughts, emails, etc. over the last few weeks!! They mean a lot to us!!

Friday, July 13, 2012

Collin had his MRI and lumbar puncture today. The MRI was scheduled for 1 pm, but it was about 2:30 when he was finally put to sleep. The only thing he could have for breakfast was jello, so by 2:30 he was starving, but other than begging to eat a few times, he handled the delay pretty well.

Collin's oncologist took us to the radiologist's office before Collin woke up so we could see some of the MRI pictures. His preliminary read of the scan is that the largest tumor, in the floor of the fourth ventricle, is significantly smaller, and we were able to clearly see that for ourselves on the MRI. The other tumors are either slightly smaller or stable, so needless to say I'm thankful for the results. While we were there, I asked to see the original MRI from 2010. The radiologist pulled it up for us, and the minute I saw it I cried. The original tumor was so big, and the ventricles in Collin's brain were so enlarged...it was just unbelievable to see. For the millionth time I thought about how much pain Collin must have been in by the time he was diagnosed, and it breaks my heart. I remembered how that morning of April 22, 2010, a few hours before that MRI, I called my parents and told them they had to get here, because I knew my baby was going to die. As we looked at the image of that original tumor this evening, and I told Collin's oncologist about that morning in 2010, she said he probably would have stopped breathing had the tumor not been found when it was.

Once again the cancer has responded to the round of chemo Collin had a few weeks ago. Since it will be a few weeks until the radiation starts, Dr. Comito feels it would be a good idea to do another round of chemo during that time so the tumors aren't given a chance to grow again. Collin could do ten days of oral chemo beginning sometime next week, and by the time he'd be ready for the Cytoxan, we'd be in Houston and he could be admitted to MD Anderson for a few days for that part of the chemo. Dr. Comito is going to talk to the team in Houston to make sure they are in agreement with that plan. We may also have to see Collin's neurosurgeon next week so he can take a CSF sample from Collin's ommaya reservoir for testing.

Thank you for all of the prayers and good wishes today. Please keep them coming, for Collin and all of the other fighters in this battle against childhood cancer. Please remember the families of the fighters who've earned their wings, especially sweet little Maddie, who was about a month younger than Collin and had beautiful blue eyes; she passed away this morning with her parents by her side. And please keep Collin's oncologist in your prayers as well as she enters the next phase of her own battle against cancer.

Many have asked me about upcoming fundraisers, so here's info for the next one. Please spread the word, and thank you for your support!!

Sunday, July 8, 2012

Collin has been feeling good and doing well over the last few weeks. We did twelve days of G-CSF shots to help boost his white blood cell production, and he handled every single shot like a champ...bravely and with very few tears. His blood counts were checked every few days in clinic, and on June 29 he had a platelet transfusion. Everything went smoothly, and with the help of the Tylenol and Benadryl used to prevent an allergic reaction, he slept through most of the hour-long transfusion. I had to wake him up so we could go home, and he must have been in a pretty deep sleep because he had an all out tantrum when I woke him. Since his platelets were low, he ended up with a nosebleed because he was crying so hard. Thankfully we were still in the clinic when it happened, and not in the car! The next day, we returned to clinic for a three-hour blood transfusion, which was uneventful. Throughout the week I monitored Collin's temperature because he usually ends up back in the hospital with a neutropenic fever about a week or so after higher dose chemo. Thankfully his fever never went high enough to warrant a re-admission!

6/28/12-Sleeping during platelet transfusion

6/29/12-Sleeping during blood tranfusion

6/29/12-Collin's & my snowmen made out of Model Magic

6/29/12-Collin was very brave as his port was deaccessed

Collin's hair began falling out thanks to the chemo, so once again we took him to the barber and had his head shaved. I think it will be a long time until he has hair again, because the radiation would also cause it to fall out, and it can take a long time to grow back after radiation, if it comes back at all. We also took Collin to see his first fireworks last week. I was slightly concerned that the sound would bother him since he is so sensitive to loud noises, but we were a few blocks away from where the fireworks were being set off, so other than being tired, he enjoyed them.

7/2/12-Last moments with hair

7/2/12-Sitting very still for the barber

7/2/12-A new look, yet again

We will fly down to Houston on July 20, and our consult at MD Anderson Cancer Center has now been changed from July 23rd to July 26th. The radiation won't start until the beginning of August, and I think it will last about two months. Unfortunately Neya's first day of school is August 27. Right now we think Bill, who will be home working for the majority of the time the rest of us are in Houston, will fly down to bring Neya home in time for school, but that means Collin and I will be apart from her and Bill for most of September. These next two months are going to be difficult since the four of us won't be together, but I keep telling myself that although it will feel like forever, two months isn't long in the scheme of things.

Between all of our activities, doctor, and therapy appointments, as well as trying to get things ready for our trip, the next two weeks are going to fly by. Collin has his next MRI this Friday the 13th, and I'm trying not to be superstitious. Please say a prayer that the MRI will show improvement after this most recent round of chemo! I will share the results as soon as I know them!

7/8/12-Napping in the bean bag chair