Tuesday, April 7, 2015

So this month marks five years since Collin was originally diagnosed with a brain tumor. This year April seems to be weighing on me more than the last few years. I think it's because Easter fell on the same weekend five years ago. I remember five years ago the weather was nice, and the four of us had gone to the playground. Collin didn't seem quite himself, and that night he started throwing up. The vomiting continued for 24 hours, and the next night we took him to the emergency room to be evaluated. He was dehydrated, so he was admitted, and Collin and I spent Easter weekend in the hospital. We thought he had a stomach bug. Little did we know that that was just the beginning, and life as we knew it was about to fall apart. Last Wednesday evening, Collin started throwing up before he went to bed. He also threw up in his sleep a few hours later. He didn't have a fever, and it brought me back to that night five years ago. I had what I guess was a panic attack; I was crying, shaking, and felt very anxious. It wasn't until he started running a low-grade fever on Thursday that I felt more relaxed. I don't often have moments where ptsd sends me into a tailspin, but it happens occasionally, and it's not fun. As it turns out, Collin must have had a 24 hour bug; by Friday he was better. We enjoyed our Easter weekend, and I kept thinking sbout how lucky we are that Collin is still here, and doing as well as he is. I don't ever take that for granted.

Yesterday afternoon Collin was tired, and after lunch he told me he didn't feel well. I took his temperature, and it was 101.8. He had no other symptoms of being sick, just a fever and fatigue. Of course in the back of my cancer-mom mind, I was thinking "Aren't these symptoms of leukemia? He's at risk of secondary cancers because of all the chemo he's already had; does this mean anything?" My mind is not a very peaceful place anymore. At least I know that every other parent of a child who's had cancer does the same thing, so I'm in good company. Today he seems to feel fine but he still had a low temperature when he woke up, so I had to keep him home from school today. I did take him to his GI appointment yesterday even though he didn't feel well because his reflux is still a problem. Some days he seems ok, and other days he throws up and/or complains of burning in his chest. He's been taking Prevacid which reduces the amount of stomach acid produced, and Carafate which coats the esophagus and stomach to protect them from the acid. Dr. Qureshi has decided to continue the Carafate, stop the Prevacid, and try a different medication called Bethanecol. This drug is supposed to increase the rate that the acid is emptied from the stomach. I'll touch base with him in a month, and he'll see Collin again in July, at which point he may discuss doing another endoscopy to see how things look.

Collin's TSS, Jordan, has been working with him for a little over two weeks now. He spends the morning in school with Collin, and facilitates interaction with the other kids in the classroom. He does a good job encouraging Collin to do things that are outside his comfort zone, which is harder for me to do as his mom (and also I'm not in the classroom every day), and he does it in a way that is compassionate. I know he's in good hands with Jordan, and Collin enjoys spending time with him.

Collin's next MRI is scheduled for April 15. As soon as I know results, I'll post them. If you don't mind, please send prayers, postive thoughts, etc. that there will still be no evidence of disease. Thank you!

Tuesday, March 24, 2015

February was pretty uneventful, other than Collin and me having a stomach bug that lasted eight days. Unfortunately we missed THON weekend at Penn State because of it, so we spent the weekend watching the live stream. It's not quite the same as being there in person though! Once again PSU raised $13 million for The Four Diamonds Fund... amazing!!

The last few weeks have kept us busy. Collin is officially registered for Kindergarten in the fall. He told me he doesn't want to leave the teachers he has this year, but I know he'll be in good hands next year too. After seeing how difficult it is for him to relate to his peers though, I do worry about how he's going to do in a larger, busier group of kids. He has difficulty tolerating loud noise, which also doesn't help. He has told me kids his age are "kind of wild," and it's easy to see that he's unsure how to fit in. Thankfully we just got paired with a TSS, or therapeutic support staff, which is an additional service that he qualifies for since being given the autism diagnosis in December. The TSS will spend time with Collin each week both at school and at home/in the community, and help Collin learn to socialize with his peers, coping skills to help with anxiety, etc. We met the TSS today, and he was wonderful with Collin. I think Collin will enjoy and benefit from their time together.

Collin's ophthalmologist, Dr. Frankel, who helped diagnose the brain tumor in 2010, unfortunately had to retire suddenly in December. So this month, we saw a new pediatric ophthalmologist who recently started at Hershey. Dr. Ely was very compassionate and kind, and she thinks she remembers seeing Collin during her residency when he was inpatient in 2010. She reviewed Collin's history, and did a very thorough exam with dilation.

Collin's right eye always looks bloodshot. Dr. Ely explained that this is called pannus. Blood vessels have grown into bottom of the cornea, which is normally avascular. This happened as the eye worked to heal the corneal abrasion he got in 2010. At this time the blood vessels are not blocking the vision in that eye, but they could if they grow into the cornea anymore. Dr. Ely will monitor this closely. She wants us to continue with lubricating drops, and has added Restasis to try to decrease the inflammation. Currently the right eye is legally blind, and is more nearsighted than before. She changed the prescription in the right eyeglass lense because of this. Both eyes have tiny cataracts, but they are worse in the left eye. These are likely a side effect of radiation, and I know of other kids who have needed cataract surgery years after radiation. The vision in Collin's left eye tested as less farsighted than before, so Dr. Ely changed the prescription in the left eyeglass lense to reflect this.

Since patching hasn't been easy (Collin frequently takes the patch off or peeks around it if I'm not right next to him to stop him), she discussed other options to try. Right now, a sticker has been placed over the left eyeglass lense to make the lense foggy and make the vision in the left eye almost equal to right eye. He can't see much with his glasses like this, and as he wears them, the right eye will be worked more. As it improves, a foggier sticker can be put on, and as the right eye gets stronger and he can see more with it, maybe Collin will be more willing to leave the patch on. Since he will have difficulty seeing with this filter over the left lense, he's allowed to take his glasses off to do schoolwork, because the prescription in the left lense is not significant. Dr. Ely said we have until 8-10 years of age to try to preserve any vision in the right eye. She will see Collin again in two months.

The day after the ophthalmology visit, we went back to Hershey for an ear cleaning and to have a new hearing aid mold made. Ever since radiation, the wax in Collin's ears is very dry, and needs to be removed by an ENT. Collin's next hearing test is in April, so he'll get the new hearing aid mold during that visit. We were also going to order new glasses that day, but for some reason Hershey isn't an authorized eyeglass provider by our insurance. So I got a list of authorized providers, and then went on a search for new frames. The first place we tried had very little selection, and didn't carry any frames that had detachable sunglasses. Collin's eyes are very sensitive to sunlight, so the sunglasses are important. The second place had more of a selection, and they were able to order a frame that comes with magnetic sunglasses for us to look at. It came in yesterday and we liked it, so now the prescription lenses have been ordered. Hopefully in another week, Collin will be wearing his new glasses.

Monday, January 19, 2015

Once again, an update is WAY overdue. Collin had his most recent visit with his endocrinologist in November. In the six months since his previous visit with Dr. D'Arcangelo, he has gained 7.5 lbs and 1.11 inches, so he's growing, slowly but surely. Despite being born an inch longer than Neya was at birth, he is now quite a bit shorter than she was at this age, thanks to chemo and radiation. The good news is that currently his growth hormone levels are within normal range, so we don't yet need to think about starting daily growth hormone injections. Collin's most recent MRI was on December 5, and thankfully it was clear. We're now scheduling them every four months instead of every three, so his next one will be in April. During his check-up with Dr. Comito in December, she noticed lordosis in his lower spine, which means the curve of his lower back is more exaggerated. This could be caused by the radiation to his spine, and we will continue to monitor it. On January 5th, Collin had a visit with the gastroenterologist. His reflux has been pretty well controlled by the Prevacid and Carafate over the last three months, so Dr. Qureshi is having him continue the medications for another three months to give his esophagus enough time to heal. If Collin is still doing well the next time he sees Dr. Qureshi, we will talk about slowly weaning the medication.

With another clear MRI on file, we finally decided it was time to take out the mediport in Collin's chest. Due to an increased risk of infection with a central line, illness accompanied by a fever of 101 meant a trip to the ER for blood cultures to make sure the fever wasn't being caused by an infection in the port. Now that Collin is in school and exposed to bugs that often cause fevers, we've had to make three of these trips in four months. Since he doesn't need regular bloodwork, the port wasn't being used much, so it was time to let it go. The surgery to remove it was January 9th. We were at the hospital for six hours that morning, and everything went very smoothly. After Collin woke up from anesthesia, we had lunch and then came home. Less than 30 minutes after getting home though, Collin threw up, and began shaking. In ten minutes, his fever climbed to 101.7, so we quickly headed back to the hospital to make sure he hadn't gotten an infection. An IV was placed in his foot, bloodwork was done, and a chest X-ray was taken to rule out atelectasis (collapsed lung), which can be a complication from surgery. Everything checked out fine, so after five hours in the ER, we returned home once again. Thankfully, Collin has been fine ever since.

In 2012, before starting his radiation treatments, Collin had a baseline neuropsychological evaluation at MD Anderson, and in 2013 he had a second neuropsych eval done there as well. A neuropsych evaluation is a series of tests that give an overall picture of how the brain is working, specifically in the areas of reasoning, concentration, visual-spacial, problem solving, counting, language skills, and memory. Children who've had radiation to their brain typically have this evaluation done yearly, to monitor the effects the radiation has on their brain as they continue to grow and help determine what kind of assistance they need in school to help them learn. Collin's third neuropsych eval was done on December 30 by a well respected clinical psychologist in Hershey. He came out of this evaluation with a new diagnosis: mild autism.

Now, to say I was surprised by this diagnosis would be putting it mildly. There are so many people who know plenty about autism and have worked closely with Collin over the last six years, from his pediatrician, his inpatient and outpatient therapists at Hershey and the IU, to the psychologist at MD Anderson who tested him twice; but not one of them have ever mentioned a suspicion of autism. I'm not quite sure I agree with the diagnosis; personally I think every single item on the diagnostic checklist can be explained by his treatment, or conditions he was in during treatment. He was isolated from other kids his age from the time he was diagnosed at 16 months old, until starting in the speech/language group at the IU in 2013. After being diagnosed with the brain tumor, he spent most of the following seven months in the hospital. Then, after his stem cell rescue, he had no immune system, so we still had to keep him away from most people. After that, our time was spent going to multiple appointments every week, such as clinic, ST, OT, and PT appointments. He never had the opportunity to go to playdates, storytime at the library, preschool, etc. like Neya did at that age. Since he's never had a chance to spend much time around peers, he's way more comfortable with and better at interacting with adults. He has social anxiety around peers and larger groups, because he doesn't have a lot of experience around them. He has told me he doesn't want to make a mistake when he asks classmates to play with him in school; he's afraid they won't like him. He desperately wants to fit in though, and doesn't like feeling different. He's sensitive to loud noises, which I was told was due to his high frequency hearing loss. He wasn't speaking more than one or two words before he was diagnosed with the brain tumor at 16 months, but I had been told this was because of the location of his tumor. He doesn't always make eye contact with people he doesn't know well, but he's more reserved/shy around new people because he's unsure of how to interact with them. He was always cuddly and made eye contact as in infant though. He likes to imitate the tv shows he watches, like The Wiggles, but with no friends his age and very limited experience in normal social situations, is it really all that surprising that he fantasizes about characters who are like friends to him? I could go on, but you get the idea.

So where does this leave Collin? While I question whether he's truly autistic, the diagnosis doesn't change anything about him. What it may change however, is what services he qualifies for when it comes to his education. Dr. Mayes made a referral for wrap-around services, which will get him a one-on-one therapeutic support staff for school. If we can find a TSS who is good, and consistent, it could be a very good thing for Collin. He deserves the best chance at becoming an independent and productive member of society, and if this will help him reach his full potential, then I can accept it. It isn't something I would have chosen for him, but compared to the possible alternative... a child has to survive cancer first to deal with everything that comes after it, so we'll learn to handle it and keep moving forward.

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.