Monday, October 6, 2014

On Tuesday, September 30, we left our house at 6 am to be at Carlisle Regional Medical Center by 7 am, for an 8 am endoscopy. It's a little nervewracking going to a new facility that we're not familiar with, but all of the staff was very nice! Usually when Collin has anesthesia at PSHCH, we stop into clinic first for a nurse to access his port; then the anesthesiologist can administer the anesthetic right through the "tubie" instead of using gas to put Collin to sleep. This is our preferred method, since Collin really doesn't like the mask and gas. However, this time I expected the anesthesiologist to use the gas since we didn't have the luxury of being accessed in clinic beforehand. I spoke to the anesthesiologist before the procedure and shared with her Collin's dislike of the mask. I was very pleasantly surprised, and very grateful, when they called a nurse over from their Cancer Center nextdoor to access Collin's port! When they saw how well Collin handled his port being accessed (he didn't even flinch) they were amazed! Then, even though it's not standard procedure for them, they got me scrubs to put on and they let me accompany Collin into the OR for anesthesia. As long as he knows I'm with him, he remains very calm, and it's just easier on everyone. I was very grateful they bent the rules for me.

The procedure was over in less than an hour. Dr. Qureshi found a few areas that are very inflamed in the esophagus and stomach, and he found an ulcer in Collin's esophagus. He took biopsies from five areas to check for allergies, infection, etc. Then after the endoscopy was finished, he placed a pH probe. It looked like a feeding tube coming out of Collin's nose, and was connected to a little monitor. Collin wasn't too happy when he woke up and realized there was something in his throat. He doesn't remember having a feeding tube throughout his treatment in 2010. I can tell you from when I learned to place the feeding tube (by doing it on myself) that it's a pretty uncomfortable feeling to have a tube going down your throat. But in true Collin fashion, he adjusted to it as the day went on, and he handled the whole experience amazingly well! We had to keep a journal and push certain buttons on the monitor when Collin ate or drank something, layed down flat, or had any reflux symptoms. Then we had to return the following day for the pH probe to be removed.

Today we followed-up with Dr. Qureshi. As we knew, Collin definitely has a reflux problem. As for what is causing the reflux, Dr. Qureshi said it could be one of three things. 1) Collin's stomach may be producing too much acid; 2) his stomach may produce a normal amount of acid but his esophagus and stomach are very sensitive to acid; or 3) it's an injury from radiation that hasn't had a chance to heal and has become more and more irritated. He ordered a fasting blood test to check Collin's gastrin level, which indicates the level of acid production.

Thankfully the biopsies were negative for allergy or infection. The plan is to treat with medication for six months, and then Dr. Qureshi may decide to repeat the endoscopy to see if everything is healed. Collin will continue on the Prevacid twice a day, which will prevent stomach acid from being produced and give his digestive tract time to heal. He will also start taking a medicine called Carafate, which is a liquid that he will take four times a day. Carafate will coat the inflamed areas, creating a barrier to any irritation.

One test came back showing Collin's lactase level is low; a normal range is between 15 and 45.5, but his was 13.4. Dr. Qureshi said that if Collin has increased belly pain, gas, or diarrhea after having dairy products, it means he's slightly lactose intolerant, and we can give him a pack of lactaid before he has dairy products.

Dr. Qureshi will call me when he gets the results of the pH probe test tomorrow.

Friday, September 26, 2014

Last Thursday (the 18th), Collin and I started our day at clinic at 9:00 am for the labwork that the gastroenterologist ordered. Then we went down to radiology where Collin had an abdominal ultrasound. This was to check his organs to see if there were any problems that could be causing the reflux/vomiting. The ultrasound tech was the same one who had done Collin's ultrasound in 2010, after he had the VOD from the heavy duty chemo for his stem cell rescue. Collin did very well for the ultrasound, laying very still, turning onto his side when the tech asked him to, etc., but he whispered to me, "Are we almost done? This is boring." When the ultrasound was finished, we went to nuclear medicine for the last test, called a gastric emptying test. The purpose of this test was to check the motility of Collin's digestive system, to make sure food moved through the stomach and upper intestine completely, and as fast as it should. Collin had 10 minutes to eat scrambled eggs that had radioactive dye in them, along with a piece of toast and some water. The nuclear medicine tech gave me specific directions to only use the fork to feed Collin the eggs; he warned us not to touch them with our hands (and yet I had to feed them to my child!) After Collin ate what he could in the ten minutes, a scan was done of his stomach. A second scan was done an hour later, a third scan was done an hour after that, and a fourth scan was done two hours after the third one. In between the scans, we walked around the hospital, played on the playground behind the cafeteria, and hung out in the waiting room playing with the things I had brought with us. It was a long day of not being able to eat and just waiting around, but as usual Collin handled it like a champ. He told me one time that he was hungry, but he didn't complain at all. Finally, after the last scan at around 3:20 pm, we were able to have something to eat.

On Monday, we met with the gastroenterologist to get the test results. He let us know that the labwork, the ultrasound, and the gastric emptying test were all normal. On one hand it's nice to know that things are working as they should be, but on the other hand it doesn't help explain what could be causing Collin's reflux. So, the doctor recommended two more tests, an endoscopy and a pH probe, which will be done next Tuesday. For the endoscopy, the doctor will insert a small scope into Collin's mouth, down into his esophagus, stomach, and the top of his intestines. He will take some tissue samples, and will look for any signs of infection, ulcers, etc. Then for the pH probe, he will insert a small flexible wire in through Collin's nose down into his esophagus. The wire will be taped to his cheek, and be connected to a small monitor. Collin will wear this probe for 24 hours, and it will record the amount and seriousness of the acid backing up into Collin's esophagus. After the 24 hours, we will return to the outpatient surgical center so the probe can be removed. Then a week later, we will meet with the doctor to find out the results. Collin will be put to sleep for the endoscopy and pH probe placement, and he had to stop taking the Prevacid a week before the procedure. Since he started having Prevacid twice a day, he has been more comfortable and had very little symptoms of reflux. Unfortunately, since stopping it Monday evening in preparation for these tests next Tuesday, the symptoms have increased. Yesterday they were pretty bad. Collin threw up in the car on the way to school, and again last night after dinner. He complained all day that his tummy hurt/burned, and the only thing I could do was give him Maalox every four hours. After throwing up yesterday morning, he asked me, "Do you think I'm broken?" I'm hoping the doctor can figure out what's wrong so it can be fixed!

I am thrilled to report that school is going very well for Collin! He's excited to go every day, and he doesn't want to miss anything. He's even enjoying the playground more and letting the teachers and the classroom aid help him. When Collin missed school for the first round of tests and then the appointment with the gastroenterologist, his teacher told me that his classmates were concerned when they heard he was going to the doctor. So earlier this week, I spent a few minutes in his class telling his cancer story and explaining things to help his classmates understand better. They listened carefully and asked good questions. It was a great experience, and I am so happy to know that Collin is surrounded by such caring people every day at school!

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!