Monday, August 19, 2013

Well, today didn't go as planned. We got up at 4:00 am, and left the house at 5:00 am to be at TCH at 6:00 am. We were directed to the wrong place, and then I got a call on my cell phone saying that the doctor was sick and had to cancel the surgery. We chose to have this procedure done here because the ophthalmologist highly recommended this oculoplastic surgeon, and we were going to be here anyway, but this is the second time he's canceled on us (the day we flew down, his office called to cancel the pre-op appointment, and Bill had to make a few calls to get it rescheduled to a different day). I know there are surgeons closer to home who can do the procedure, so I'll make arrangements to have it done sometime after we get home. Sigh...I'm so frustrated!

Sunday, August 18, 2013

Collin's latest MRI was on Wednesday, August 7th. Everything went smoothly despite a late start caused by one of the MRI machines breaking down. Best of all, the results were what we were hoping for...no evidence of disease!!

Then on Friday, August 9th, Collin, Neya, and I flew to Houston. On August 12th, we had a one year post-radiation follow-up with Dr. Mahajan, the radiation oncologist at MD Anderson. She was very happy with how Collin is doing! There are still spots on his MRIs where the recurrent tumors were, but they are smaller and don't enhance (light up). Most likely the spots are scar tissue. We talked about my fears of recurrence after he finishes the last few rounds of maintenance chemo (historically Collin's cancer has disappeared while he's on chemo, but comes back soon after he's off treatment), and she reminded me that "we haven't been in this place before," meaning after having had radiation.

After seeing Dr. Mahajan, we went to the main hospital for Collin's neuro-psych testing, which monitors the effect of treatment on Collin's memory, cognitive status, etc. It was frustrating to watch because there were many questions he refused to answer, or answered incorrectly, even though I know he knew the correct answers. I guess that's what happens when a four year old boy becomes bored with answering a lot of questions! It will be six weeks or so before we have the test results.

On August 14th we saw the pediatric ophthalmologist from Texas Children's Hospital who straightened Collin's eyes in December. I was nervous about the visit, because I didn't know if there would be any improvement in the vision in his right eye because he cheats when he wears the eye patch. Much to my surprise, she did notice a slight improvement, and told me to keep patching! She wants us to follow up with the pediatric ophthalmologist at home in a few months, and she doesn't need to see us until next summer.

The beginning of the week was busy with appointments, but we've had some fun too. We visited some friends of my parents, and got to feed the turtles in a lake near their house...




We also got to spend an afternoon visiting Hannah, another medulloblastoma fighter we met last summer at the proton center, and her mom. Here is a picture of Hannah and Collin (notice they are both wearing their Peach's Neet Feet shoes!)




On Friday, we went to the Memorial City Mall so Neya could go to the American Girl store. As it turns out, Collin left the store with a new friend! They sell the Bitty Baby twins seperately in the store, so Collin chose a little boy. The staff at the store wanted to help make the doll look like Collin, so they put a hearing aid in the doll's right ear, and we got him a pair of glasses too. At home I have a tiny eye patch that matches Collin's and will fit over the doll's glasses. Collin is thrilled to have a friend that looks like him!




Yesterday morning we went to the Houston Zoo for a few hours. We enjoyed seeing a LEGO exhibit, as well as some of our favorite animals. And of course we had to feed the giraffes again!



















Tomorrow Collin will have a small surgical procedure at Texas Children's Hospital during which an oculoplastic surgeon will place a gold weight into his right eyelid. This weight will work with gravity to help Collin's eyelid close more. Hopefully it will keep his eye more comfortable and protected, and lessen the need for lubricating eyedrops.

Thursday, July 25, 2013

Well once again, I can't believe how much time has gone by since my last update. We've had a busy but good three months.

Collin came down with a virus in April that ended up going through all four of us. It lingered with him though, and he was admitted to the hospital for one night for observation. His doctor ordered a few emergency doses of hydrocortisone, which helped his body handle the stress of being sick, and was what he needed to get over the bug. At his next appointment with his endocrinologist a few weeks later, I told her about him needing the hydrocortisone when he was sick, and we talked about how he wasn't eating much and hadn't gained any weight in a while. She decided to put him on a two-week trial of a low dose of cortef. During those two weeks, he was also on accutane, and I noticed that the cortef seemed to be a huge help in preventing his skin from getting so dry. It also increased his appetite. So she decided to keep him on it, and told me to let her know if he gained too much weight. Well, this Monday in clinic, he was at an all time high of 18k (39.6lbs). I checked with the dietician, and she said he is below 3% for height, and around 50% for weight on the growth chart. This means he's not overweight, he's undertall (hey wait, that's my excuse!) Ideally for his height, his weight should be around 15.7k. I let the endocrinologist know about his weight, and asked if he could just take the cortef for the two weeks of each month that he is on accutane, and she said yes. Hopefully this will work well for him.

Collin's one night stay in the new Penn State Hershey Children's Hospital

At the end of May, Collin got his hearing aid. He has adjusted well to it, and says it does help him hear better. Here is a picture of him after he got it:

Collin's new hearing aid came with a matching friend

He also had a dental check up in June, and we found out he had his first cavity. It was very tiny, and the dentist was able to fill it quickly. The cavity was so small he didn't have to drill enough that Collin would even feel it, so he didn't even numb Collin before filling it (the needle would have hurt more then the drill). We were in and out in about five minutes, and Collin didn't even flinch! He was just proud that "the dentist fixed my tooth!"

Collin having his teeth cleaned

We've been enjoying our summer, and have finally gotten to do some of the "normal" family activities that we haven't been able to do in a long time. Collin loves music, and has enjoyed going back to Kindermusik classes. We took him to his first movie in a movie theater recently (to see Despicable Me 2), and he loved the movie and the experience (not to mention the minions!) And, we finally got to get away for out first family "just for fun" vacation since before Collin was born! We spent a week at the beach. Collin wasn't too fond of the sand (he definitely doesn't like getting dirty) but he did walk in it a little and sit on a towel on the beach. When he decided he was ready, he stood at the edge of the water and let the water wash over his feet and legs. He was content to stand in the surf for a while a few times, and he really enjoyed it. He had a little run in with a ghost crab who pinched his finger, but Collin wasn't bothered by it until I put a bandaid on him. That's when he got mad...at me, because he didn't want a bandaid! Silly Mom! It was wonderful to get away, go somewhere new, finally relax a bit, and not have to go to appointments every day. By the end of the week, he was telling me he didn't want to come home! (Neither did the rest of us!)

Very reluctantly playing in the sand

Letting the waves come over his legs

Hi Mom!

On August 7, Collin has his next MRI. Then two days later he, Neya, and I will return to Houston for two weeks. Collin will have his one year post treatment follow-up with his radiation oncologist at MD Anderson. He will also have another follow-up with the pediatric neuro-ophthalmologist who did his eye surgery in December. As long as everything looks fine, he will have what I hope will be the last eye surgery, during which the oculoplastic surgeon we met last summer will put the tiny weight in his right eyelid that will help his eye close more. Then two days after we come home, Neya will start fourth grade!

Three years ago today, while I held my 16 month old baby boy in my arms, I called my parents (who live out of state) and tearfully told them they had to get here fast because I knew my son was going to die. He had been sick for weeks, unable to eat much of anything, and throwing up what little bit he managed to get down. He had lost weight, and had gone from sweet and happy, to inconsolably fussy, to weak and lethargic. There was an emergency MRI scheduled for that afternoon, because a pediatric ophthalmologist was concerned about something he'd seen during a follow-up exam the day before. Hours after calling my parents, after the excruciating wait for the MRI to be completed, we heard the words, "There is a large tumor in your son's brain." Life as we knew it ended that day three years ago, and it would never be the same again.

Today I proudly watched my now four year old son enthusiastically participate in his OT session, where he continues to make incredible progress. It has been a long, hard journey since that day three years ago. There have been surgeries, long hospital stays with lots of chemo, a stem cell rescue with life threatening complications, two relapses, more chemo, gamma knife radiation, a drug trial, and radiation to his whole brain and spine. There has been three years of OT, PT, and ST. The very first goal was for him to turn his head to the right again. Since then, he has learned to sit, stand, and walk again. He has learned to swallow, eat, and talk again. He is still gaining strength, coordination, and motor planning skills. He has vision and hearing problems. He is brave, and strong. He is sweet, loving, and funny. He is happy, and joyful. He is inspiring. He is one of the most amazing children you could ever meet. He is Collin, my hero. ❤

Thursday, April 11, 2013

Well, Monday Collin had his routine every-three-month MRI. As usual, I was a nervous wreck in the days leading up to it, because I know things can change in a heart-stopping instant, no matter how well Collin seems to be doing. Thankfully, everything looks good-there is no evidence of any new disease!! So, we've been given three more months to live "normally" until we go through the worry again. I swear, every MRI takes a year off my life!

While we were discussing the results with Collin's oncologist, we were talking about how medulloblastoma behaves differently in different people. Sometimes it goes away after chemo and never comes back, and never needs any additional treatment such as radiation. Sometimes it continues to grow even while being fought with heavy chemo and radiation. In Collin's case, historically it responds very well to chemo, but comes back when the chemo stops. That was the reason we finally had to do the radiation. Collin has been on maintenance chemo since shortly after finishing radiation, but eventually he'll have to stop taking it. I worry about what will happen when he stops taking the chemo; it will be a while before we know if the radiation worked to get rid of the cancer once and for all. So unfortunately I think scan time will become even more nerve wracking in the future.

Last Friday, Collin had his latest hearing test. His hearing has not changed since the last audiogram six months ago; the hearing in his left ear is normal, and the hearing loss in his right ear remains limited to high frequency sounds. We've known for a while that Collin would need a hearing aid for his right ear, and the audiologist decided it was time to start the process. It takes some time to get the hearing aid made, and by starting the process now, Collin will be used to it by the time he starts school, which is where he'll need the hearing aid most. A mold was made of Collin's right ear, and he got to choose the color the mold will be made in, and the color of the hearing aid. He chose green for the mold, and bright blue for the hearing aid! In Pennsylvania, before you can get a hearing aid, you need to be cleared by an Ear, Nose, & Throat doctor, so Collin has that appointment toward the end of May. Then he'll get the hearing aid the following week. I was a little bummed thinking about the hearing aid now becoming a reality; it's something else for Collin to have to get used to, something else that I fear will make him a target of bullying in school, etc. But Monday helped put things back into perspective for me. I remember in 2010 thinking that even if chemo completely robbed Collin of his hearing, we could live with that if it meant he was still alive. The anxiety I felt about the MRI, and the relief that I felt when we were told it was clear, helped remind me that in the scheme of things, a hearing aid is no big deal. I can't control the things that Collin has to deal with, but I can control how I choose to handle them, and therefore hopefully how Collin will handle them.

Thursday, March 28, 2013

I got a call Tuesday afternoon that Collins glasses were ready, so we went and picked them up. He was excited to get them, and said, "Now I look like you and Daddy and Neya!" A little later however, he was crying, "I don't want to wear them! I don't like them!" He's slowly getting used to them. I think he looks extremely adorable in them!

Friday, March 22, 2013

Collin and I flew down to Houston Monday for the follow-up appointment with Dr. Edmond Tuesday afternoon. As usual, Collin was a great traveler, and the trip went smoothly. The appointment Tuesday was a bit long once you factor in time spent waiting, but overall it went very well.

Dr. Edmond said the condition of the surface of Collin's right eye has improved about 90% with the frequency of the lubricating drops, but she feels it is still a bit dry which is why he holds it closed with his finger so much. At first she didn't feel the patching was helping, but she had been thinking we had been doing it for a longer time. When I reminded her that we had only been patching since January (after Collin's eyes had healed following the surgery in December), and told her that I've noticed a difference in how he sees out of the right eye when the left eye is patched now versus when we first started in January, she said to continue patching for two hours a day. Collin is very near sighted in his right eye, so she gave us a prescription for glasses, which will help with a few things. First, glasses will help protect his good eye, which will be reassuring once he is in school. Second, the right lense will help a bit with the near sightedness in the right eye, which will help him see even better when the left eye is patched. Third, we can use an eye patch that will fit over the eyeglass frames instead of the patches that stick to Collin's face; when he's on the Accutane and his skin is very dry, the patch either pulls off skin, or doesn't stick if there is moisturizer on his face. And fourth, since Collin's eyes are very sensitive to sunlight and he wears sunglasses outside, she said we might be able to find glasses that come with clip on sunglasses. So the plan is to get Collin his glasses, and keep using the lubricating drops and eye patch for the next few months. When we are back in Houston over the summer for his one-year post-radiation follow-up appointments with MD Anderson, Dr. Edmond will check his vision again. Then while we're there, she wants Collin to have the surgery to put the small gold weight in his right eyelid to help that eye close a bit more so Collin might be more comfortable.

After the appointment, we stopped in to visit our friend Hannah, who we met last summer at MD Anderson Proton Center. She is also fighting medulloblastoma, and has been getting her chemo at MD Anderson Cancer Center. It was really nice to see her and her parents, even if it was a quick visit!

Wednesday we had a relaxing day with my parents, and bright and early Thursday morning, Collin and I flew home. Our flight left at 7:30 am, so we were up by 3:30-4:00 am (central time). I chose that flight because it got us back to BWI early enough that Bill had time to pick us up and get us back home before it was time to pick Neya up from school, but it turned out to be too early for Collin. He started crying about ten minutes before we boarded the plane. Once we were on the plane, he went to sleep for a little while, but when he woke up, he was very unhappy. He dozed once or twice more, but when he wasn't dozing, he was whining or crying or throwing a tantrum. Needless to say, it made for a stressful flight. It was pretty out of character for him, so I think he was tired and had just had enough. When we finally got home, he was happier, and when he saw Neya after she got home, he was VERY happy!

Today Collin and I went and picked out his glasses. He looks very cute in the frames we chose, and we were able to get clip-on sunglasses that fit the frames perfectly. Collin was excited to pick out the frames; he said "Now I wear glasses like mommy, and daddy, and Neya!" I hope he still feels excited when they're ready to be picked up in about a week and he realizes he has to wear them all the time!