Tuesday, September 9, 2014

In early August, we flew down to Houston for Collin's annual follow-up with his radiation oncologist at MD Anderson Proton Center. She was very pleased with how he's doing. I told her about the reflux issues he's been having, but she did not feel it is a long-term side effect of radiation. I have been trying to help Collin's reflux any way I can. I make sure his clothes aren't too tight, I make sure he stays upright after meals, I prop him up in bed so he's not laying flat, I try to avoid giving him any food that could aggravate the reflux, etc. There were a few weeks where it seemed like there was an improvement in his symptoms, but then he came down with a respiratory infection, and his symptoms increased again. Last week we consulted a pediatric gastroenterologist. He spent a lot of time going over Collin's history and discussing possible causes. He ordered some tests to try to find the cause of the reflux. He ordered bloodwork, an abdominal ultrasound to look for any organ damage that could have been caused by chemo, and a gastric emptying test that will check the motility of Collin's stomach and intestines. If those tests don't show anything, he may do other tests that are more invasive, like an endoscopy an a pH probe test. It sounds funny, but I'm hoping this doctor can find a reason that Collin is having such reflux, because hopefully then we will know how to fix it. It has become a quality of life issue for us. Collin has thrown up in the grocery store, in church, in the car, on the couch, in bed... often there isn't much, if any, warning that it's going to happen. The couch and bed are once again covered in waterproof sheeting to make clean-up a bit easier, and I often follow him around with an emesis basin or bag asking him if he feels like he's going to throw up. Collin is way more aware of things now that he's older, and I worry about him feeling self conscious if/when he throws up in public, especially school. So on Thursday, September 18 we will be at the hospital all day for the tests. The bloodwork and the gastric emptying test are fasting. The labs are scheduled for 9:00 am, the ultrasound is at 9:30 am, and the gastric emptying test goes from 11:00 to 3:00. It's going to be a loooong day.

As I mentioned in my June update, we made the decision to send Collin to a pre-school program this year. It's called transitional kindergarten, and it's for children who are kindergarten age, but may benefit from an extra year before starting kindergarten. The class has two wonderful teachers, and is very small; there are only eight students in the class. Collin will also continue receiving physical and occupational therapy from his therapists from the IU, who will come work with him in the classroom setting. Last Friday we had the opportunity to stop by the school so Collin could see his classroom, and meet his teachers and a few classmates. At first, Collin was pretty reserved, but as we played together, he started to have more fun. By the time we left, he told me he was going to like it there, because his teachers were nice. So yesterday, Collin was eager to get to school for his first day (orientation). As we got ready to leave the house, he solemnly said, "I will try to make friends Mom, I promise." My heart just shattered. When I dropped him off at his classroom, he very bravely waved goodbye to me. When I picked him up, he ran to give me a big hug, and seemed like he had a good time. All of the students and teachers went out to the playground afterwards. Collin hasn't played on a playground too many times, and between uneven surfaces, and lots of kids who can move around a lot faster than he can, it's an unsettling environment for him. I held his hand hand, helped him climb up steps and slide down slides, but after a short time, he was ready to leave.

Today was the first regular day of school for him. He seemed a little more nervous when I dropped him off at his classroom this morning. When his class went out to the playground today, he wouldn't go on any of the playground equipment, even though there was an aid who was able to help him. When she talked to me later, I couldn't hold back my tears. I hate that Collin has already been through so much, and he still has so many challenges ahead of him. I'm sure he realizes that he's different from his peers, and I think he doesn't feel like he fits in. I hope that as time goes on, he'll make friends, and feel more confident in himself.

We had a surgical consult yesterday to discuss the proposed nissen fundoplication procedure to help Collin's reflux problem. A nissen fundoplication is a procedure where "the gastric fundus (upper part) of the stomach is wrapped around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter" (Wikipedia). The surgery would take 2-3 hours, and would initially be done laparoscopically. However if the surgeon were to go in and find a lot of scar tissue from radiation, a larger incision could be needed. Afterwards, Collin would need to stay in the hospital for at least 24 hours, but most children end up staying for 2-3 days.

The procedure is generally considered safe and effective, and there is a 95% chance that it would help fix Collin's reflux over time. However, there are risks with the procedure. After the procedure, it can take patients a while to be able to eat normally, because food can get stuck at the bottom of the esophagus where it has been tightened. There is also a risk of bloating, where air becomes trapped in the stomach. To help manage these risks, a gastrostomy tube (a tube that goes from the stomach through the abdomen) is automatically placed during the surgery, and would be left in for approximately six months. This would allow the stomach to be burped, and if the patient has difficulty eating, they can be fed through the g-tube. Other risks include tearing of the espophagus or stomach, and damage to surrounding organs during surgery. There is a small chance that the procedure would need to be redone in eight to ten years.

One question that we have asked is why Collin's reflux has returned/worsened over the last six months or so. Of course no one knows for sure, but he has been steadily gaining weight since his treatment ended. Since weight gain could be a possible factor, it's possible that changes in his diet could help. Cutting out foods that can aggravate reflux, and slowing his weight gain and giving his height time to catch up could help. Neither Bill or I feel comfortable jumping into this surgery, so over the next three to six months, we will make changes in Collin's diet and routine to try to manage the reflux better. Then down the road we can try stopping one reflux medication at a time to see if there has been an improvement, and possibly have another UGI study done to see if there has been any change. If Collin's symptoms worsen over time, or he aspirates while refluxing (breathes the acid into his lungs), we may reach a point where he would absolutley need the surgery. But since we're not at that point yet, we will try treating it more conservatively and less invasively. If we reach a point where he definitely needs the surgery, at least we'll know we tried everything else first.

Friday, June 20, 2014

Well, we've continued dealing with episodes of vomiting since my last update. The Zantac seemed to work for a while and Collin had a bit of a break from throwing up, but over the last few weeks, the episodes started up again. Earlier this week Prevacid was added, and an upper GI study was ordered for this morning. Collin was a trooper for the test. He was nervous about drinking the barium and started to refuse it tearfully, but I told him we didn't want him to keep throwing up. So he took a breath, and started drinking it. He did such a good job. A series of X-rays were taken while he laid in a few different positions, and we watched as the liquid went down his esophagus into his stomach, and then right back up his esophagus. The report states that the flouroscopy showed "multiple episodes of high volume, high level reflux." The resident explained that the lower esophageal sphincter between the esophagus and stomach, which normally prevents food from moving out of the stomach and back up into the esophagus, isn't closing all the way, which allows stomach acid to flow back up into the esophagus. This is most likely collateral damage from the craniospinal radiation. If it was allowed to continue for a long time, it could eventually cause esophageal cancer. The Zantac and Prevacid will neutralize the acid to prevent damage to Collin's esophagus, but they won't correct the actual problem. To correct it, Collin will probably need a surgical procedure, called a nissen fundoplication. The surgeon would wrap the upper part of the stomach (called the gastric fundus) around the lower end of the esophagus and stitch it in place, reinforcing the closing function of the lower esophageal sphincter. It can be done laparascopically, but may require a short hospital stay, and has it's own side effects. We have a surgical consult on July 16, where we'll find out more information. While I'm relieved they could identify the cause and it can be fixed, I'm sad for Collin that he'll have to go through another surgical procedure, and that it's because of his cancer treatment. This is why children need better, less damaging cancer treatments, which will only be found through research.

Also since my last update, Collin has had routine check-ups with the local pediatric ophthalmologist and endocrinologist. The ophthalmologist was pleased with how Collin's eyes look. The vision in his right eye was better than I expected. I was doing my best with patching but I admit it wasn't being done as much as it should have been; even when it was, Collin would cheat by moving the patch and peeking out of the side of it. The ophthalmologist said we could stop patching because he wasn't sure it would cause much more improvement anyway. The endocrinologist didn't have any new concerns, and was pleased to see that Collin had grown an inch and a half since his visit six months earlier. We've also started the process of re-immunizing Collin, as most of the protection from his original immunizations was destroyed by his stem cell rescue. There has been a surge in some diseases like measles, which could be very dangerous to people with weaker immune systems. We apparently missed coming into contact with someone who had measles by about an hour one day last month, so it's important that Collin be protected as soon as possible.

I guess the only other thing to report is that we've finally made a decision about Collin starting school in the fall, or rather where he would go. We were deciding whether we'd send him to kindergarten, with the possibility of him having to repeat it the following year, or whether he should go to pre-school since he's never had a chance to do so. It was a hard decision. The staff and students at the local elementary school he'd go to have gotten to know him over the last year through fundraisers and school functions, and they have been wonderful to him. I know he'd be in good hands there. It's also the only year he and Neya would ever be in the same school, and the idea of her being able to walk him to his classroom and be there if he needed something was very comforting. However, Collin continues to be overwhelmed in larger groups of people, and he's not used to being around kids his own age since most of his first five years has been spent pretty sheltered, and mostly with adults. So, we've decided to send him to a kindergarten transition program through a local church, which has a great reputation. It will also be half day, mornings, five days a week like our elementary school, but the class has two teachers and is only half the size as the elementary school would be. We think it will be a little easier for Collin to adjust to, and the extra year will hopefully help him in the long run. We know that when he transitions to regular kindergarten the following year, the wonderful staff and students at our local elementary school will welcome him with open arms.

Monday, April 14, 2014

Collin had a good weekend, and thankfully didn't catch strep throat from poor Neya, who felt pretty crummy, especially Saturday. The MRI was scheduled for 8:00 am, so 6:00 am was the cut off for clear liquids and medicines. At 6:00, I rubbed Collin's head and kissed his cheek, and whispered that I needed him to wake up so I could give him his medicine (Zantac, and a stress dose of hydrocortisone since he'd be getting anesthesia). He opened his eyes, sat up, and swallowed the pills in two mouthfuls of Jello. Just like that, no fuss, no complaints. I asked if he wanted anymore Jello, since it was the only thing he could have, right then, until after the MRI. He shook his head, and then said, "I'm done sleeping. What can I do?" He handles morning way better than I do!

We got to the hospital, stopped by clinic to have his port accessed, and headed down to radiology. Collin was calm, but kept making sure I wasn't going to leave him. I reassured him I'd be with him until he was asleep, told him I wasn't allowed to go into the MRI room, but that both Bill and I would be there when he woke up. Then he enjoyed doing stickers while we waited for his turn. When they were ready for him, he walked to where they needed him, watched them put the propofol in his tubie as I hugged and kissed him, and that was it. Since they were only scanning his brain this time, it was quicker than normal. I went upstairs, met Bill (he came to the hospital after getting Neya on the school bus), and ate breakfast. By the time we got back downstairs, we only waited a few minutes until they came to get us. We waited with Collin as he woke up, gave him a snack, got him dressed, and then we were on our way.

This afternoon we got the call that the MRI was all clear. I was definitely relieved! And since the Zantac seems to have helped the vomiting, Dr. Comito is going to keep Collin on it and not put him through a GI study for now. As of Sunday night Neya was on antibiotics for 24 hours, so she's not contagious anymore, and she's feeling better, so today was a win all around!!

Saturday, April 12, 2014

A Quick Update

When I picked Collin up from his group at the IU Thursday morning, his speech therapist told me he had been unsteady on his feet that morning, stumbling a few times and falling once. Hearing that, and thinking about the recent vomiting had me in panic mode Thursday afternoon. Even though logically I knew he probably had an off day and the unsteady balance and recent vomiting were most likely not related, I still let the fear get the best of me. Later I realized too that we're about a week away from the four year anniversary of his diagnosis, so I'm a bit more edgy than normal. Thursday afternoon I got a call from radiology confirming his MRI; somewhere along the line the schedule changed, so the MRI was changed from Friday 4/18 to Monday 4/14. Then I heard from Dr. Comito, who told me that Dr. Iantosca (Collin's neurosurgeon) could see him in brain tumor clinic Friday afternoon.

I felt calmer Friday. Collin had PT and OT in the morning, and worked hard, as he always does. There was nothing out of the ordinary with his balance, personality, etc. Friday afternoon we went back to clinic. Dr. Iantosca checked him out and didn't find anything alarming; in fact he was very pleased with how Collin is doing. Since starting the Zantac Monday night, Collin hasn't thrown up, so most likely the cause of the vomiting will turn out to be reflux, motility problems, or scar tissue as a result of radiation. So, Collin will have the brain MRI Monday morning, and then Dr. Comito can schedule the GI study. 





Wednesday, April 9, 2014

Wow, I've been so busy with the holidays and our appointment schedule that I didn't realize it's been so long since I've updated. I'm happy to say Collin has been doing very well! We celebrated his fifth birthday in December. Every birthday is a blessing, and every day we get to spend with Collin is a gift!

Over the last few months we've had the opportunity to help give back to the Four Diamonds Fund by sharing Collin's story at a few mini-THON assemblies, and attending a few local mini-THONs. Neya's elementary school had their first mini-THON in January, and it was an amazing success. They raised an incredible $20,000, which was $15,000 over their goal!The West Hanover Elementary students worked hard and did a wonderful job! We are blessed to live in such a supportive and caring community! Then in February we attended our fourth THON at Penn State University. It was another amazing weekend, and once again Penn State outdid itself; this year they raised $13.3 million for the Four Diamonds Fund!

Collin continues to receive acupuncture once a week, and tolerates it very well. He even decided he doesn't need lidocaine cream before the tiny needles are inserted; as usual, he amazes me with his bravery. He still has OT and PT at Hershey once a week, and continues to make progress and get stronger. He has now been attending the language group at the Intermediate Unit once a week for the last few months, and he loves it. He has fun when he's there, and he always looks forward to working on his homework. The work can be challenging for him, but small improvements are exciting to see. It's been interesting for me to see how simple tasks or abilities that we take for granted can be more difficult for Collin to learn; once again it puts life into a new perspective.

Collin's latest MRI was in the beginning of February. It was his first MRI since finishing a year of maintenance chemo in November, and I was nervous (historically he has relapsed when he's been off chemo for a short time). I'm happy to report that Collin reached another milestone...the MRI was clear, despite being off chemo for three months!

Over the last two months or so, Collin has had random episodes of vomiting, which have more recently been increasing in frequency. He has a sensitive gag reflex because of where his tumor was, so if he is congested, I'm not really surprised if he gags and throws up. Unfortunately it's just a fact of life for many brain tumor survivors. But the episodes are happening more often even though he's not congested. Logically, I know his scan in February was good, but I'd be lying if I said I'm not scared on some level. We had a monthly clinic appointment Monday, so we discussed it with Dr. Comito. She doesn't think he has relapsed, but knows GI will want to rule that out first, so he will have an MRI of the brain only on April 18 (he was due for brain and spine in May, so she's just skipping the spine this time, and will do both again in July). She said hypothyroidism can cause motility issues, so she checked his thyroid with bloodwork, but that looked normal. After the MRI she will refer him for a GI study to see if there is a motility problem, or a problem with the valve between the esophagus and stomach causing reflux. In the meantime, she gave us a Rx for Zantac to see if that helps. He's been taking the Zantac for 48 hours now, and hasn't thrown up in that time. Hopefully we're on the right path!

Collin had his (every six month) hearing evaluation today. We were happy to learn that his hearing is stable! It's been stable long enough that now he doesn't have to have another hearing test for a whole year. We just have to go back in six months to have his hearing aid checked. I'm thankful for another small victory!

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