Thursday, November 14, 2013 -- Big Changes

Since my last update, Collin has had seven acupuncture sessions. He tolerates them well. He has just a tiny bit of anxiety as the needles are placed (they are very tiny needles, and I use a little lidocaine cream to numb the sites that the needles go into, so I think it's more the anticipation than discomfort that makes him anxious) but as soon as they are in, he relaxes and dozes off. Then when the doctor comes back and removes the needles, Collin sits up and says "I didn't feel a thing!" He has been going twice a week, and although he's been on a little break while the doctor is out of the country, he will resume acupuncture next week. I definitely think the acupuncture is making a difference; Collin's right eye seems to be blinking more during the day, and closing more when he sleeps. I used to have to clean a lot of matter out of his right eye in the morning when he wakes up, but over the last few weeks I've noticed his eye is now almost completely clear in the morning. This makes both Collin and I happy, because my having to clean his eye tended to be a big ordeal, so neither of us misses it! I have also noticed more muscle tone in the right side of Collin's face, especially in his cheek around his mouth. His face looks a bit less droopy and more symmetrical. At first I thought maybe I was just imagining it, but a few other people have said they can see the change too. 

Relaxing during acupuncture

Right eye looking mostly closed during sleep

The right side of Collin's face looks less droopy

Collin also had his 6-month audiogram (hearing test) in the beginning of October. There were no changes, so his hearing is stable. He did however need a larger mold for his hearing aide, because he seems to have gone through a bit of a growth spurt! I finally had to take him shopping for some bigger clothes, which I hadn't had to do in over a year, so I wasn't surprised when the hearing aide mold suddenly wasn't fitting correctly anymore. It took a month for the new mold to come in, so Collin didn't wear his hearing aide for that time, but since he really only needs it when there is a lot of background noise, he didn't seem to have any trouble hearing without it. He was also fitted for new Sure Steps orthotics for his feet due to his growth spurt. At his 6-month endocrinology appointment yesterday, the doctor was pleased with how he's doing. He's in the 75th% for weight and the 5th% for height.

On Wednesday November 6th, Collin had his "routine" quarterly MRI. As always, Collin was very brave, and handled everything like a pro. It's tougher as he gets older; he understands more of what's happening and asks more, sometimes tougher questions. Nothing gets by him. He knew we were going to clinic first thing that morning to get a "tubie" in. This means that the anesthesiologist can put IV propofol directly into his mediport to put him to sleep instead of first using gas to put him to sleep and then putting an IV into his arm to put the propofol into. Collin hates the gas mask being put over his face, and he checked with me over and over to make sure that they wouldn't use the mask. He did great in clinic having his port accessed, but as we made our way down to radiology I could tell he was nervous. He wanted to walk (not ride in the stroller), but he walked very slowly. He kept making sure I was going to be right there with him, that I wouldn't leave his side. He said, "You're always with me, mom." Once all of the paperwork was signed and they were ready to administer the anesthesia outside of the MRI room, he bravely sat on the gurney. When he realized I couldn't be in the MRI room with him, even though I told him he'd be asleep by then, his little lower lip quivered. But he never cried. I hugged him and talked to him while the propofol was given, and kissed him as he went to sleep. Then as I left the room, I couldn't hold back my tears any longer. It never gets easier watching your baby be put to sleep, no matter how many times you watch it or how brave he is. 

Here is Collin bravely having his port accessed:

After the MRI was finished, I sat next to him as he began to wake up. It didn't take him long to wake up and start asking for lunch. Then his nose started bleeding. He was on his last round of accutane, so he was dry to begin with, and the oxygen they keep on him during the MRI dried him out even more. His nose bled fairly heavily for nearly half an hour, and they were getting ready to take us to the emergency department by the time it finally stopped. Collin was annoyed that the nosebleed kept us in recovery a bit longer and delayed his lunch, so he was happy to finally be able to eat and then go home.

The radiologist who was so great about reading the MRIs so quickly recently moved to another state, so I wasn't sure how quickly our oncologist would have the results. That evening she called to tell me it hadn't been read yet, but that she looked at it herself and didn't see anything concerning. This was reassuring, but it was still nice to hear an official "all clear" from her the next morning. So, we can breathe a bit easier until the next MRI in February. 

A little Sweet Frog to celebrate a clear MRI

Last Saturday evening, Collin took his last dose of vorinostat, and Monday he took his last dose of accutane. He has completed twelve rounds of maintenance chemo since finishing radiation, and is officially finished with treatment. I'm very happy about this, but very nervous too. We've been here twice before, so I'm not ready to celebrate just yet. Maybe after we've reached a year or more without relapse, I won't feel like I'm tempting fate by throwing a party. It feels very strange not to have to go to clinic every two weeks for lab work; now we don't have to go back until December to have his port flushed (this needs to be done every four to six weeks). Dr. Comito hasn't made plans yet to remove his port; she said we're leaving it in for a little while longer as kind of an insurance policy (the last time his port was removed, it had to be replaced a month later due to relapse), and I'm fine with that for now.

Taking his last dose of vorinostat

There have been some pretty big changes recently in Collin's therapies as well. Over the summer he was evaluated at the Capital Area Intermediate Unit. This means an evaluation of Collin's developmental level was done to determine what, if any, support services he could benefit from to help him get ready for school. The areas that were evaluated included child development, speech and language, occupational therapy, physical therapy, psychology, audiology, and vision. The evaluation determined that Collin would benefit from further speech, occupational, and physical therapy, and possibly some vision support. Since he qualified for early intervention services, an individual educational program (IEP) was developed. So, in addition to the occupational and physical therapy that Collin is getting at Hershey Medical Center, he began OT, PT, and ST through the IU. Since Collin's articulation has greatly improved, his speech therapist at Hershey discharged him from her care once he was scheduled to begin services at the IU. We've worked closely with her for three years, so it was very difficult to say goodbye to her, and I will always be grateful for the difference she has made in Collin's life. 

The speech therapy at the IU focuses on areas such as cognitive aspects of communication (e.g., attention, memory, and problem solving), social aspects of communication, language comprehension, expressive vocabulary skills, following multi-step directions, etc. For a few weeks, Collin had the IU occupational and physical therapies on Thursday mornings, and the IU speech therapy on Friday mornings. Then, after seeing Collin a few times, the speech therapist determined he would be a great fit for the language group that she runs on Thursday mornings. In this group, the skills that she was working on with Collin are practiced with a small group of up to six other peers. So, it's more like a preschool setting with a small group of four-year-olds, where they practice things like listening, recall, following directions, socializing with others, etc. This type of setting will be extremely beneficial to Collin, because his exposure to other children his age has been so limited before now. It will help prepare him for starting kindergarten next year too. While he is in this language group for 2.45 hours every Thursday morning, the OT and PT will see him there as well. So Thursdays will be busy and somewhat tiring for Collin, but they will be very fun for him too. This morning was his "first day of school," and he's been talking about it and looking forward to it for over a week. He picked out a backpack, he's been asking questions, making sure I would drop him off and pick him up, and reassuring himself (and me) that he would come back home afterwards. This morning when I dropped him off, he put his coat and backpack in his cubby, and didn't look back. As wonderful as it's been to see his excitement, it was a tough morning for me. Sure, it's hard for many parents to send their little ones off to school for the first time, and I remember shedding a few tears as I sent Neya out into the big world. But Collin...well he's never been away from my side as I've watched him fight so hard with everything he has just to live, and I've been by his side every moment to cheer him on and encourage him, and celebrate his victories. So as happy as I was to see his excitement to go to school and make new friends, I was also sad to turn him over to someone else for a few hours, and not be right next to him to watch him learn and make progress and have fun. But in the end, Collin had a fantastic morning (of course he can't wait to go back!) and even though I shed more than a few tears, I survived. After celebrating his first day of school with a special lunch, Collin recovered from his busy morning with a nap. :)

All ready for his first day of school

After school we came home to a great note from Neya

Going to school and having 3 therapies in one day is tiring!

So, over the last month and a half, there have been lots of changes. We've added appointments to our busy schedule, and taken others off. We've come to the end of treatment, and now we just wait and watch. Collin is slowly doing more "normal" kid activities, like participating in his very first kid's race at the THON 5K at Penn State, attending his first Hershey Bears hockey game, and going to "school." Change, especially a lot of changes in a short amount of time, is unsettling, but I'm trying to focus on the positives as we adjust to yet another "new normal." It is a blessing and an honor to watch this boy of mine grow and experience new things, and touch many others as he does.

Collin captured many hearts as he ran in his first THON 5K kid's race

First Hershey Bears hockey game

Halloween 2013 as Spiderman

Tuesday, October 1, 2013

Our time in Houston in August was good, despite the eye surgery being canceled. The worst part of that experience was not finding out the surgery was canceled until we got to the hospital. I figure if the doctor was sick enough to cancel, he knew it Sunday night, and I actually would have preferred a phone call in the middle of the night telling me the surgery was canceled. That way I wouldn't have had to put Collin through the motions of getting up before dawn, not being able to eat, etc. I quickly made peace with the whole thing though, and once we were back in PA, I made an appointment with the eye surgeon who had sewn Collin's right eye partially (and temporarily) closed to allow it to heal when he had a corneal abrasion in the fall of 2010. After a consult with him, we scheduled the surgery to place the weight in Collin's eyelid for October 22.

Since returning home from Houston in August, Neya started fourth grade, and now has dance class twice a week. She also decided she wants to play the flute, and had her first lesson last week. Collin has resumed all three of his therapies at Hershey, and will soon be receiving additional therapies through the county Intermediate Unit. He is currently in the middle of his tenth cycle of maintenance chemo. He has finally grown enough that I had to buy him some bigger clothes for the first time in about 2 years.

Last week, we had the amazing opportunity to participate in a press conference at the Pennsylvania State Capitol Building, where State Representative Kerry Benninghoff discussed House Resolution 389 designating the month of September as “Childhood Cancer Awareness Month” in Pennsylvania. During the half hour press conference, Representative Benninghoff, doctors (including Collin's oncologist), and parents (including myself), spoke about the importance of childhood cancer awareness. It was an honor to participate, and we had some fun after the press conference, when Representative Benninghoff gave the group of us a tour of the capitol building.

Childhood Cancer Awareness Press Conference, PA State Capitol Building, 9/25/13

Rep. Benninghoff, and some very special doctors and parents who also spoke that morning.

Collin's beloved oncologist, Dr. Comito.

Neya and Collin being supportive during my speech.

Rep. Benninghoff teaching us some interesting facts about the capitol building and how things work.

Trying out the desks in the PA House.

Last Friday after Collin's OT appointment, we went to the building at Hershey Medical Center where the medical records office is. I needed to request a copy of some records to take to our first IEP meeting this coming Friday. I filled out the release form, and completely expected to return a few days later to pick up the records, because that's how it has always worked in the past. Well, this time it was different. As soon as I filled out the release form, we were taken back to an office where a medical records staff person pulled up the records I needed and printed them right away for us. After about ten minutes, Collin and I left with the records we needed. Then something kind of incredible happened.

As we were getting off the elevator on our way back to our car, a doctor who was going to get on the elevator leaned down to look at Collin. It happened very quickly, and I'm not even sure what drew her attention to his face, but she stopped me and asked about his facial paralysis and his right eye not closing. Most people probably don't notice the asymmetry in his face in quick passing. I explained that it's due to nerve damage following his brain surgery in 2010. She then said, "I can help him, I want to help him." She asked if we could wait for her to run up to her office for some information, and I agreed to wait. Sure enough, just minutes later, she returned with a copy of a newspaper article. The article describes how she used accupuncture to help a woman who had nerve damage to her face following surgery to remove a rare tumor from her neck. This woman had experienced terrible pain for years, and was unable to open one of her eyes due to the nerve damage. After just a few sessions of accupuncture with this doctor, her pain was significantly reduced, and she was able to open her eye again! I told the doctor that we have surgery scheduled for the weight to be put in Collin's eyelid, and she said, "Don't do surgery, I can help him." I figured we have nothing to lose by trying, and if it prevents us from having to do another invasive procedure, it will be worth it, so I agreed to call and set up an appointment.

I can't describe the feeling I had as we walked to our car. I was shaking, and I had tears in my eyes. I have always said that all along this journey over the last three years, the right people have been put in our path at the right time. I thought about the things that had to fall into place that morning to allow that encounter to take place: the amount of time I spent looking something up on my phone before leaving the therapy parking lot (which I rarely do), the 10-15 minutes it took to wait for the medical records I hadn't expected to leave witsh the same day, down to us getting out of the same elevator (out of three) that the doctor was getting into. And of course the eye surgery not taking place in Houston in August. I had a profound feeling in my soul that this whole encounter was more than just coincidence, and I had to sit in my car for a few minutes to collect myself before driving home. I am very eager for Collin to see this doctor Friday and I'm hoping and praying she can make a difference!

This past weekend was the first of three canning weekends during which Penn State Students collect donations in their big blue and white cans.  They will be out again in October and November, so if you see them, please consider making a donation. Even if it's just some spare change you have laying around-no amount is too small! Every penny raised by THON goes to the Four Diamonds Fund, which benefits children like Collin treated for cancer at Penn State Hershey Children's Hospital in so many ways! We were very excited to see some canners Sunday morning!

Also, this coming Sunday, October 6, we will be participating in the Four Diamonds 5K Run & Fun Walk for the second time. It's just one small way we can try to give back to the Four Diamonds Fund for everything they have done, and continue to do, for Collin and so many other amazing kids! If you'd like to make a donation to our team, you can go to the 2013 Four Diamonds 5K Run & Fun Walk page, click the button that says "Donate To This Event" and type in Team Kratzer. Again, no amount is too small, every penny helps!

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!

Thursday, March 14, 2013

It seems I am WAY overdue for an update!! Basically, things have been going along smoothly since my last post. Collin is well...healthy and happy. He has resumed his therapies, so we are at Hershey three days a week (four when he has clinic, every other week). He had a six to seven month break from his therapies, starting last summer when we went to Houston for radiation, until the beginning of this year when the worst of the radiation fatigue was behind us. I didn't think the time off caused him to lose any abilities, and it seems he continued to move forward even with the break. It has been exciting to watch him resume therapy and to see what he can do now that he wasn't able to do seven months ago!

The end of January brought some snow our way, and Collin decided he wanted to go out and play in it for a few minutes. It was only his second time ever playing in the snow. He played for about 15 minutes; he didn't last long because he minds the cold, but he said he had fun while he was outside!

January, 2013

The first Saturday in February, we spent a day with our THON organization at Penn State Altoona. They held a carnival with games and activities, and as always, we had a blast with the students. It also made us very excited to spend THON weekend with them on February 15-17. Our Altoona group broke the fundraising record for the Penn State Commonwealth campuses by raising over $100k for the Four Diamonds Fund...$105,570.01 to be exact! And the grand total raised for the Four Diamonds Fund by Penn State's Dance MaraTHON for the 2012-2013 school year was over $12 million!!! AMAZING!!!

Collin pie-ing Daddy in the face at the family carnival

Our 6 awesome dancers and us THON weekend 2013

Water gun battles are a favorite activity at THON, so Collin decided to give it a try. He was NOT a fan of getting wet!

There are many things to see at THON...Collin isn't familiar with Star Wars or Storm Troopers yet; he thought it was "exciting to see robots, Mom!!"

THON 2013...FTK

Collin continues with his maintenance chemo two weeks a month. He's also (unhappily) wearing his eye patch for two hours every day. Collin and I will be flying to Houston for a few days next week for a check-up with Dr. Edmond, the pediatric ophthalmologist at Texas Children's Hospital who did his eye surgery in December. And we're already only a few weeks away from Collin's next MRI at Hershey, scheduled for April 8. In the meantime, we're just trying to be present and enjoy each day we have together!

Friday, January 11, 2013

Yesterday, we got to clinic bright and early for the fasting labwork ordered by the endocrinologist. Then we hung around until it was time for the MRI. First Collin asked me if we HAD to get his pictures taken (that's how I explain the MRI to him), and then he told me he didn't WANT to get his pictures taken. Then he kept making sure Bill and I would be there with him when he went to sleep and when he woke up. When it was finally time for anesthesia, Collin was calm and cooperative. In some ways it's easier now that he's older, because I can explain things to him in simple terms so he understands and knows what to expect. Of course he can also more easily tell me he doesn't want to do something, which is hard when there's not a choice.

The MRI went smoothly, and Collin came out of anesthesia fairly quickly and easily. While we were waiting for him to wake up, Dr. Comito came to tell us that although not all of the images were read yet (an MRI of the brain and spine is made up of literally hundreds of pictures, so it takes time to get them and read them), the images of his brain looked good. We breathed a HUGE sigh of relief! Ironically, while Collin was in MRI, we got a call from the endocrinologist saying all of his labwork came back normal, so he doesn't need to start on oral hydrocortisone yet! For now we'll just keep monitoring him.

This morning Collin had his speech therapy evaluation. Collin grew tired fairly quickly and needed encouragement to finish the hour-long session. His speech therapist could see some improvement, but there is still a lot to work on. She will see him once a week, and will initially see him for 45 minutes due to his fatigue.

After speech therapy, we went home for lunch, and Collin took a little nap. Then we went back to Hershey for his neuro-oncology clinic appointment. We met with two of the other oncologists and the neurosurgeon, who reviewed the MRI report with us. There is no evidence of active disease. The areas where the relapses were do not enhance (show up brightly), and there is decreased blood flow to those areas as well (tumors need a blood supply to grow). The neurosurgeon mentioned how Collin seems to have this "life force" in him because he keeps managing to "bounce back" from every setback he's ever had, and how the person least affected by everything he's been through is Collin himself. Tonight, I'm just so incredibly grateful...for another three months to live "normally" and watch Collin continue to move forward, for the amazing doctors, nurses, and therapists who take such wonderful care of him, and the constant love and support from our family, friends, and so many others around us. We are blessed.

Wednesday, January 9, 2013

Collin has had two of his three therapy evals so far this week. Monday we saw his physical therapist. She will see him once a week to work on strengthening and balance; some things we need to work on at home include having him stand and walk on his knees, and catch and kick a ball without losing his balance. Today we had occupational therapy. He will also be getting OT once a week, to also work on strengthening and coordination. We will see his speech therapist Friday. I've also been working on patching Collin's left eye, and got him up to an hour yesterday. Our goal is two hours a day.

Today we saw a pediatric endocrinologist due to the low Cortisol level found last week. Collin has hypopituitarism; basically the radiation has damaged his pituitary gland, which in turn is not controling the thyroid and adrenal glands properly. Cortisol is produced by the adrenal glands, and controls blood pressure and blood sugar, helps the immune system, and is released as part of the body's response to stress. When Collin has anesthesia tomorrow for his MRI, he will receive a "stress dose" of hydrocortisone to prevent an adrenal crisis, which can be life threatening. The endocrinologist ordered fasting bloodwork to be done early tomorrow morning before his MRI; she is checking his thyroid, cortisol levels, etc. She suspects the labwork to show he has hypothyroidism as well. If this is the case, he will need to take medication three times a day...for the rest of his life. A few years down the road, he will also need daily injections of growth hormone. None of this really comes as a surprise; I knew this was likely because of the radiation. I'm just a bit surprised that it has shown up so soon, but Collin's oncologist said this is not uncommon.

The morning after Christmas, Neya woke up at 2 am with severe ear pain, so the next day I took her to our pediatrician. As I suspected, she had an ear infection. While we were there, I mentioned that Neya has complained to me a few times about a rapid heartbeat and pain in her chest. So, the doctor ordered bloodwork and an EKG. Yesterday we met with the pediatrician to discuss the results. All of her bloodwork was fine. Her EKG showed a normal sinus rhythm, but also showed a "mild right ventricular conduction delay". Our pediatrician doesn't think it's anything serious, but since it's not something he would have expected, he has referred Neya to a pediatric cardiologist for a cardiac workup. Her appointment will be next Tuesday.

Tomorrow will be a long, stressful day. We'll be at clinic at 8 am for labwork, and the MRI is scheduled for 11. Hopefully we will be able to get a preliminary read tomorrow. My anxiety over scan results has reached a new level now that Collin has had radiation. Before, I always knew that we still had radiation to try, which was some reassurance. It was his best chance at a "cure". Now that we've done radiation, I know there is not a lot left to try if he relapses again. It's a terrifying thought. There is nothing in the world I want more than to see my sweet boy grow up.

Tuesday, January 1, 2013

First, as I said on Collin's facebook page last evening, I want to wish you all a Happy New Year, full of the things that are most important: FAMILY, TRUE FRIENDS, and GOOD HEALTH!!! It would also be wonderful if 2013 could bring much needed CURES for our kids!!!

Once again, I can't believe it's been nearly a month since my last update! Highlights of the last month include Collin's fourth birthday, visits and birthday wishes from our THON family, a visit with Santa, a great Christmas spent with family and friends, and a quiet New Year's Eve at home.

During our follow-up with Dr. Edmond three days after the eye surgery, she was very pleased with how much straighter Collin's right eye looked. His eyes have healed very nicely, and starting this month, we will resume patching to strengthen the weak right eye. When we see Dr. Edmond again in mid-March, she will see if the vision in the right eye has improved, and whether she needs to make any further adjustments. Our trip to and from Houston went smoothly; Collin has proven to be a pretty laid-back little traveler.

This was taken today-hair is growing in and eyes are looking straighter!

Collin turned four on December 18th. He was very excited to open cards and gifts, and for us to sing "Happy Birthday" to him! That week we had some visits from some of our THON kids as well, and were surprised when they stopped by to decorate our house for Christmas!

12-18-12...Opening birthday gifts

Surprise Christmas decorations...

...courtesy of our Altoona THON family

The weeks before Christmas brought some unexpected and incredible deliveries! If you follow Collin's facebook page, you know that we were searching for the Penn State Mr. Potato Head. Well, in an effort to locate one, a friend of ours contacted Hasbro, who referred her to Promotional Partners Worldwide. A wonderful gentleman at PPW Toys searched high and low, and found what is apparently the original prototype of the Penn State Mr. Potato Head. He sent this elusive Mr. Potato Head to Collin, along with a few other things he knew Collin would enjoy. Then, about a week or so later, a huge delivery came from Hasbro Toys, who had also become aware of Collin's love for Mr. Potato Head. They also included things for Neya for being such a great big sister! I cannot thank PPW Toys and Hasbro enough for their kindness and generosity!!!

Special delivery from PPW Toys

Plush MPH and Toy Story 3 Operation

Toy Story 3 MPH set

Some great MPH t-shirts

The Hasbro delivery was so big, Neya and Collin could fit in the box with room to spare!

Collin was very excited for Christmas, and had a chance to visit with Santa on December 16 when he came through our neighborhood with the West Hanover Fire Department. On Christmas Eve, he kept asking if he'd be able to see Santa when he came, and was pretty disappointed when I told him that Santa would only come if he was asleep, or he'd never get all of his deliveries made. Of course Collin had a lot of fun opening gifts on Christmas Day!

12-16-12...Neya & Santa

12-16-12...Collin & Santa

12-25-12...opening Christmas presents
 

This afternoon we had a visit from our friends the Guardian Knights, who delivered a few more Christmas gifts. They brought motorcycle vests to Collin and Neya, with their new "road names" on them. They also brought a one-of-a-kind Guardian Knight Mr. Potato head to add to Collin's collection!

"Tater Tot"

Guardian Knight Mr. Potato Head

Tonight Collin finished his second course of maintenance chemo; this course has gone as smoothly as the first with no nausea or drop in blood counts. Although his fatigue isn't as extreme as it was after the radiation, Collin still tires easily and needs to take rests throughout the day, especially from mid-morning/early afternoon on. He also asks to go to bed between 6:00-7:00 every evening. I mentioned this to his oncologist, and she had us come into clinic early yesterday morning to check his cortisol level with his bloodwork. As it turns out, his level was extremely low (normal is between 1.7 and 22.7; Collin's was below .2). I've done some online research, and it seems this could be a potentially life-threatening condition if it continued undetected. Thankfully we've caught it, and we may be consulting with an endocrinologist very soon to further investigate and treat the issue.

With the first full week of 2013 (starting Jan. 7), our schedule will go back to being extremely busy! For starters, Collin's therapies will begin again. It has been five months since Collin has had therapy, and I am eager for his therapists to see how much progress he's made since they saw him in July. He has a PT eval Monday morning, an OT eval Wednesday morning, and a ST eval Friday morning. On Thursday of that week (Jan. 10) he has his next MRI. Then the next day, after his speech therapy eval, we have an appointment with his oncologist and neurosurgeon to review the MRI results. It's hard to believe that scan time is upon us again already. Although I try to ignore the fear that is always lurking in my soul and not let it get the best of me, scan time tends to bring it to the surface where it threatens to take over, because I know all too well how things can change in a heartbeat. We'll either hear "all clear" and be handed another three months of "normal" life, or we'll get unwanted news that will push us back into the pit of despair where we will desperately claw our way out to the next treatment option to try, if there are any options left. Please, please let the MRI be clear!!!