MRI & Eye Exam Results

Friday was mri day. We checked in at radiology at 12:30, and the mri was scheduled for 1:00. Collin couldn't eat anything after midnight Thursday. Since he couldn't eat, I didn't either, so by 1:00 I was not feeling very well. I'm sure he wasn't either, but as always, he never once complained or asked when he could eat.

The radiology nurse and the anesthesiologist went over the usual paperwork and consent forms. I asked them twice to get me from the waiting room before he woke up; Collin was anxious and needed repeated reassurance that I wasn't going to leave him, and I hoped to talk to Dr. Ely after she did the sedated eye exam following the mri. As always, Collin was also a little anxious about the induction mask, but we talked about it multiple times, and he chose the chapstick scent he wanted on the inside of the mask (chocolate and peanut butter cup, which I thought was torture since we were starving, lol!) When they were ready to put him to sleep, he bravely climbed on the table and lay down. I held the induction mask and spoke softly to him as he went to sleep at 1:40. 

We were scheduled to be seen in the oncology clinic at 3:00 pm. At 3:30, I was still in the mri waiting room, wondering what was taking so long. There is no phone reception there, but I got a notification of a voice mail. When I checked it, it was Amy, one of the nurse practitioners from the clinic. She said she saw that Collin was in recovery, but because of the time, they needed to reschedule his clinic appointment to Monday. I called her back and left a message, and then I walked down to where Collin was. I walked in, and he was sitting up in the bed, awake, and crying because I wasn't there. I was MAD. I reminded them that I had asked twice for them to get me BEFORE he woke up. The nurse said she was the only one there so she wasn't able to leave, but she called down to the waiting area and was told I wasn't there. I told her no one had come into the waiting room once looking for me. I don't know where the communication breakdown occurred, but next time I will not wait for them to get me, I will go back to mri on my own when I know he should be finished. Next time, Collin will be more anxious before the mri because he won't trust that I'll be there when he wakes up. 

I'm happy to report that the mri showed no evidence of disease! This means Collin has been clear of disease for four years now. He's been off treatment for three years. 

Dr. Ely said the eye exam showed that his astigmatism is definitely worse, so she wrote a new prescription for his glasses. As far as his cataracts, the one in the left eye isn't low enough to block his vision at this time. The one in the right eye is lower, but she was able to see behind it with her light, so she says that means he should still be able to see through it.

At this time Dr. Ely is not ready to remove the cataracts yet; for now, we'll get the new glasses, continue patching at home, and she will re-evaluate him in January.

A Long Overdue Update

I recently realized it's been nearly a year since I last updated the blog. I don't know where the time has gone!! So I've gone through my notes month by month to summarize everything I haven't updated on.

January
Collin saw the gastroenterologist in January for a routine check up. Since his reflux was pretty well controlled with the two medications he was on (Carafate four times a day and Prevacid twice a day), Dr. Qureshi decided not to make any changes, and asked us to come back in six months.

Later in the month, Collin had his annual neuropsych exam with Dr. Mayes. During the intelligence testing, Collin demonstrated average verbal and visual intelligence, but performed below age level on tests measuring attention, working memory, writing skills, and fine motor skills. His academic achievement test scores are below expectancy for his IQ, indicating a learning disability. Dr. Mayes' testing also showed Collin continues to have mild high functioning autism. He continues to have difficulty initiating and sustaining social interaction, difficulty establishing friendships, he engages in parallel rather than interactive play with peers, makes inconsistent eye contact, and misinterprets the actions of others. He demonstrates the perseverative characteristics of autism including distress with change, repetitive questions about what is going to happen, literal thinking, and body tensing when excited.  He has some of the somatosensory characteristics of autism including hypersensitivity to loud noise, distress with commotion and crowds, tactile defensiveness (difficulty tolerating the feel of certain clothing and dirty hands), and high tolerance for pain. He exhibits the atypical developmental pattern found in high functioning autism including early motor and delayed speech milestones, dysgraphia (difficulty with handwriting), and strength in rote memory (like memorizing lines from movies). Collin can be overreactive and distressed by input or occurrences that most children can tolerate (such as change and sensory experiences) and when misinterpreting the actions of others, which is common in autism. He also continues to show symptoms of social anxiety disorder, including shyness, social reserve, limited spontaneous speech, constricted affect, low self-confidence, self-consciousness, and worrying. Typical of social anxiety disorder, Collin is comfortable and not reserved at home and is interactive with family members and familiar people. I wish that everyone could see him the way we get to see him at home!

The third appointment in January was for a routine six month dental cleaning and check up. The dentist took X-rays, which showed some more "gifts" from Collin's cancer treatments. There are a few places where no adult teeth have formed, and a few other places where the adult teeth are not fully developed. So some of his baby teeth will not come out since there are no adult teeth behind them, and it's possible that around 18 to 20 years of age when he is done growing, he may need dental implants. While none of this came as a complete surprise since I know of older children who have had similar issues because of their cancer treatments at a young age, it was still depressing to see it in front of me on Collin's X-rays.

February
In February Collin had his bi-monthly ophthalmology check-up. When Dr. Ely saw Collin last December, the vision in his left eye had improved from 20/80 in July to 20/60, and his right eye improved from 20/300 in September to 20/70. By the February's check-up, his vision was 20/80 in the left eye, 20/200 in the right eye, and 20/70 with both eyes. Dr. Ely felt he was more nearsighted in the right eye and had more astigmatism in the left eye, which was affecting the numbers. She said his cataracts were still tiny, so she wasn't concerned about them. She wanted us to keep patching and come back in two months.

The next appointment in February was with the endocrinologist. The growth hormone shots are going smoothly, and since seeing Dr. D'Arcangelo in July, Collin gained another two inches in height. However, the bloodwork done at his mri last December showed his thyroid levels were low (hypothyroidism), so it was time to start Collin on synthroid, a man-made replacement for a hormone normally produced by the thyroid gland to regulate the body's energy and metabolism. The synthroid works best if it's taken in the morning on an empty stomach, but shouldn't be taken within so many hours of antacids, which Collin was already taking in the morning on an empty stomach. This led to me discussing his medication schedule with a pharmacist at Hershey's Cancer Institute Pharmacy. She layed out the following schedule:

•Give Synthroid first thing in morning with 4 oz water
•1/2 hour later give Prevacid with water
•1/2 hour later give Carafate
•1/2 hour later give breakfast
•Give Carafate 1/2 hour before lunch
•Give Prevacid at least 1 hour before dinner
•Give Carafate 1/2 hour later
•1/2 hour later give dinner
•Give Vit D with dinner
•Give Carafate and Growth Hormone at bedtime

Then she also advised me to ask to have Collin's aluminum level, vitamin D level, and his renal and liver functions checked the next time he had labwork done, because vitamin D can increase the absorption of aluminum in Carafate. The next day, the Cancer Institute pharmacists discussed it further, and discussed their concerns with Dr. Qureshi. He then called me, and told me to stop giving the Carafate altogether.

April
In April, we saw Dr. Barbour, Collin's new oncologist, for a routine check-up. I asked if he would consider ordering a mra (magnetic resonance angiogram) to be done as a baseline with Collin's next mri. The mra looks specifically at the blood vessels in the brain, whereas the mri looks at the soft tissue of the brain. Many of the kids I know of who've had brain radiation have developed problems years later like brain bleeds and strokes, and some doctors think it is a good idea to do at least a baseline mra. Dr. Barbour said he would research it and see if was worth doing. Then I asked him about a referral to dermatology, since I regularly find new freckles or moles on Collin, and it's the one discipline we've never followed up with. He felt it was a good idea to have him checked because of the radiation. The soonest available appointment was in August.

Collin also saw Dr. Ely again in April. The vision in his left eye was 20/40, and the vision in his right eye was 20/70. If his vision were to remain that good years down the road, and he has no other issues (problems with peripheral vision, reaction time, cognition, etc.), he could qualify for a restricted driver's license. Dr. Ely told us to keep patching, and she'd see him again in another two months.

May
In May, Collin saw his pediatrician, Dr. Rose, a few times for various reasons. He got the last of his vaccinations redone, so he is finally protected again. I had also found a lump in the side of his neck, so we were monitoring it. Dr. Rose felt it was benign, but because it got larger, he ordered an ultrasound, which confirmed the lump is a cebaceous cyst. It is harmless, and may eventually go away on its own.

At the end of May, Collin had his mri and mra. Thankfully, the mri showed no evidence of disease, and the mra showed no problems with the arteries in his head. However, his bloodwork showed iron deficiency anemia, so in the beginning of June, he had an Iron Dextran infusion in the clinic, which took a few hours. Collin had discomfort with the IV, but we couldn't figure out if it was the IV itself, or if the infusion stung going in. We tried everything we could think of short of taking the IV out and reinserting it, but since it's so difficult to get an IV into him in the first place, we didn't want to do that. Collin has a fairly high pain tolerance and is usually calm and collected during procedures, so it was pretty hard for me and the nurses to see him upset and uncomfortable.

June
In June Collin had another vision check with Dr. Ely. The vision in Collin's left eye was 20/40. The vision in his right eye was around 20/80 reading a line of letters, which is harder than reading just a single letter on a screen. Dr. Ely wanted us to keep patching, and come back in two months for a re-check.

July
In July Collin had his 63rd acupuncture session. Dr. Xu is now seeing him every six months. We also saw Dr. Qureshi, the gastroenterologist, in July. He didn't want to make any changes since Collin is doing well.
I told him about the anemia and iron transfusion, and explained that I had been trying to figure out what caused the iron deficiency since nothing in Collin's diet had changed. He said he would be willing to do another endoscopy if there was a reason to suspect bleeding somewhere. He will see Collin again in 6 months.

August
In August Collin had a clinic visit with Dr. Barbour. I was still trying to figure out what caused Collin to become iron deficient when he never was before. In my research, I read that it is recommended to take vitamin C with supplemental iron, because the acid in the vitamin C helps increase the amount of iron that is absorbed. That led me to wonder if the Prevacid that Collin has been taking for so long is preventing iron absorbtion since it cuts the stomach acid. Dr. Barbour agreed the theory makes sense, especially if there is no bleeding anywhere causing the deficiency. He sent me home with the supplies needed to get three samples for occult blood tests. If any of them were to be positive, we would look at doing another endoscopy (it turns out all three were negative, so it doesn't apoear that Collin is bleeding internally). The next time Collin has labwork, Dr. Barbour will check Collin's iron and vitamin D levels and decide if we need to increase his vitamin D, add vitamin C, and add a multi vitamin to increase his iron.

After seeing Dr. Barbour, we went to dermatology and saw Dr. Barros. He looked at Collin's freckles/moles and the spot on Collin's chin that appeared in April. He had the department chair, Dr. Miller, come in and look as well. They said chemo can cause a lot of moles, as can radiation. They looked very closely at a large freckle on Collin's head, and took pictures of it. They told me that if that freckle, or any of the others, change in appearance, size, etc., I am to let them know immediately. The spot on Collin's chin is a juvenile xanthogranuloma, and it can be left alone for now. They want to see Collin again in six months, and then yearly after that.

September
We returned to Dr. Ely in September. The vision in Collin's left eye was 20/50, but the vision in his right eye was 20/200. I told her we hadn't been doing so well with patching once school started because he's there all day now, so there  are a lot fewer hours to fit it in. She tried to examine his eyes the best she could without dilating them, and used a special camera to get a good look inside them. The camera indicated
there was a significant change in the astigmatism in his right eye, so she felt that might be making it harder for him to see. She wanted us to patch as intensely as we could for the next month, and then she would dilate his eyes and check him again. She said he may need a new prescription for his glasses.

October
So we returned to Dr. Ely in October. Collin's vision was 20/60 in his left eye, and 20/400 in his right eye. On a second test, the right eye appeared to be around 20/125. It was very difficult to get a good exam done. One reason for this is because of Collin's nystagmus; he cannot hold his eyes still for any length of time to get a good look at something. When she looked inside Collin's eyes, Dr. Ely didn't feel the astigmatism was as bad as the special camera had indicated, but again it was hard to get a good look because of Collin's eyes bouncing around. Dr. Ely also felt that his cataracts were hazier, which would also be affecting his vision, and talked about the possibility of cataract surgery. She decided that it would be best to do an eye exam while Collin is sedated so she could get the best look possible. I told her his next mri was coming up in a few weeks, so she was going to make arrangements to do the exam after the mri while Collin is still asleep.

November
This month we had an endocrinology appointment. Dr. D'Arcangelo left, so we saw an endocrinologist new to Hershey, Dr. Hale. We really liked him. Collin has continued to gain height with the growth hormone; since his last visit in February he has gained 5.8 cm in height.
However, he continues to gain weight as well, which has me a bit concerned and is making it difficult to find clothes to fit him properly. Dr. Hale had us talk to a dietician before we left. She felt that overall Collin is eating pretty healthy, but she did suggest a few changes we could make.

I think that pretty much catches you up on how Collin is doing medically. As far as other things, he's now in first grade, going to school all day. He loves school, and takes it very seriously. If he has to miss school to go to an appointment, he becomes very anxious about making up the work he'll miss. He has OT and PT at school; we put his OT services at Hershey on hold for now since he's in school all day. He continues to improve with things like handwriting, which he works very hard at. His TSS has been working with him for about three hours each day in school and five hours a week at home; however those hours are going to be weaned back over the next two months because he is doing so well. Collin is raising his hand and participating in class. He is interacting more with peers, and says yes when peers ask him to play at recess. His class is very caring, and many of his classmates enjoy looking out for him and offering help. The staff at his school is wonderful, and he is well taken care of during the day. Collin is happy and doing very well all around, and I am extremely grateful every day.

This Friday, November 11, is Collin's next mri and the sedated eye exam. Please send prayers and positive thoughts his way. I will be sure to post an update as soon as I know the results.

Monday, December 14, 2016

Collin had his mri on Friday. Since he wasn't getting anesthesia and didn't need to fast, he went to school as he normally does. I tried to keep myself busy for two hours so I wasn't focused too much on the mri, but in that time I found out that my hairdresser and friend of over 20 years had suddenly passed away. She did my hair for my wedding, she brought me a meal when Neya was born, she gave Neya her first haircut, and she came to my house to cut my hair when Collin was sick. She's been a part of my life for a very long time, and I was completely caught off guard with the news. It left me feeling sad and unsettled. She will be missed.

Finally it was time for me to pick Collin up from school and take him to the hospital for his 11:15 appointment. We started in clinic, where they took his vital signs. They measured his height as 43.9". When it was last checked in October at the endocrinologist's office, it was 42.58". So as long as it was measured correctly both times, he's gained 1.32" in the nearly two months he's been taking growth hormone shots! I didn't expect it to work that quickly, but I'll take it!

Then we went to the room where the nurse would put an IV in for bloodwork and contrast dye for the mri. Collin remembers the four attempts at placing an IV for the growth hormone stim test over the summer, so he was nervous enough about getting the IV placed this time that he was shaking. Joanne took her time finding a good vein, and then had Holly come in to hold Collin's arm still and hold the shot blocker in place to help prevent pain. I held Collin's other hand, and had him look at me. When Joanne inserted the needle, Collin didn't even flinch! He didn't feel it. It took a few tries to get the needle into his vein because it moved around and seemed to disappear, but as Joanne was about to take the needle out to try again, she got it in his vein. Then she taped the IV up so it wouldn't come out, and we were on our way down to radiology.

They called us back and had me change Collin into hospital pjs. After Collin picked the movie he wanted to watch, we went into the room with the mri machine. They got Collin positioned on the table, and placed headphones over his ears and movie goggles over his eyes. The room was chilly, so they covered him with a heated blanket. They placed a cage type thing over his head (he couldn't see it because of the movie goggles), and they moved him into the tube part of the machine. They gave me headphones to put on, and let me stay next to the machine where I could hold on to his feet so he knew I was there. An mri is a loud and noisy procedure. There are a lot of banging, knocking, and beeping sounds throughout the test. I was holding on to Collin's foot, and then he moved it a couple of times. I thought he was just checking if I was there, but when I moved so I could see into the tube, I could see that he was crying. I started rubbing his legs and trying to talk to him, but he told me later he couldn't hear me. I was worried that he was moving too much, but they didn't say anything. Once they got the first set of images, they came in and injected the contrast into Collin's IV. Then the test resumed. Once again, Collin started crying when the noises got loud. I just kept rubbing his legs to try to comfort him. I have no idea how long the test took since I couldn't have my phone or watch with me. I don't think it took more than an hour, but to Collin it probably seemed like an eternity. Eventually the mri was finished, and they came in to get Collin out of the tube. They took off the movie goggles, headphones, and blanket, and I realized the poor kid was sweaty from head to toe. We told him what a great job he did, and on the way out of the room, we showed him some of the images they took. When I was helping him change back into his own clothes, he said to me, "I didn't care for the noise." It was all I could do not to laugh at the contrast between how calmly he said it, and how upset he had seemed during the scan.

We had a late lunch in the cafeteria, and then headed back to clinic for his 3:00 neurooncology appointment with the doctors. First, one of the neurosurgeons came in to do a quick exam, and he showed me the preliminary results on the computer: "No recurrent or residual tumor seen." Another clear scan! Collin has been off treatment for two years, and has had no evidence of disease for three years! Then, Dr. Comito came in to see us. With her was her right-hand woman, nurse practitioner Amy, as well as Dr. Barbour, who was a resident in 2010 when Collin was diagnosed. He had left Hershey to finish his fellowship, and is now back at Hershey as an attending pediatric oncologist. They examined Collin, got up to date on his endocrine and gastroenterology issues, how he's doing in school, etc. Now that we only go to clinic every few months, in a way it feels like a family reunion of sorts when we're there. We discussed moving Collin's mris to every six months now. It's a little scary, but it's time. It's progress. Another step in the right direction.

Then Dr. Comito told me something I never wanted to hear. She's leaving. There is a great opportunity waiting for her in New York. The minute she said it, I cried. I can't begin to describe what she means to me. She saved my son's life. She guided us through every single step of Collin's diagnosis, treatment, and relapses. She has been to our house to celebrate Collin's birthday, and she was there for his pre-school graduation. She has laughed and cried with me through the highs and lows of this "journey." She's part of our family, and her presence is reassuring. I'm going to miss her so, so much.

Collin and I finally got home around 5:00. We were both drained, exhausted. MRIs never get easier. There's too much at stake, and no matter how long things look good, they can change in an instant. I've seen it happen too many times. Collin is unsure if he wants to be awake for the next scan in six months, but says if he can wear earplugs under the headphones to better block the loud noise, he might think about it. In the meantime, we continue with growth hormone and reflux meds. We see the gastroenterologist in January, the endocrinologist in February, and return to clinic in March for a check-up with Dr. Barbour. We'll keep living in the moment, enjoying the little things, reveling in Collin's love of learning, and celebrating each step forward.

Wednesday, December 9, 2015

I've had this update on my to do list for quite a while, but I can't believe it's been 8 months since I posted last! Life has been busy to say the least, and there never seem to be enough hours in the day!

When I last updated, Collin's school year at Linglestown Christian Nursery School was winding down. It was a fantastic year, at the best preschool I could have imagined. The staff and families of LCNS were caring and compassionate. They were so impacted by Collin and what he's been through that they decided to hold a mini-THON to raise awareness and benefit the Four Diamonds Fund. They raised nearly $4000 for the fight against childhood cancer!

Collin's first TSS was with us until the end of April. Jordan spent the mornings with Collin in preschool, helping Collin interact with his peers more, encouraging him to try new things, and helping build his self confidence. Collin loved spending time with Jordan, and it was hard to say good-bye to him. I'm certain he is continuing to impact others positively in his new job, and we wish him the best. Collin's new TSS, Jen, started with us over the summer, and is now with Collin every day in school. She picked up where Jordan left off, and Collin looks forward to seeing her every day. She has become like another member of our family.

Collin graduated from pre-school on May 13. It was a wonderful ceremony, complete with little caps and gowns. The kids and teachers did a fantastic job! We were very blessed to have family and friends with us that night to celebrate Collin, including his oncologist and hospital social worker, and four members of our Altoona THON family!

Collin started Kindergarten at the end of August. It took a few weeks for him to adjust and settle in, but it helped to have Jen with him every day. He is now enjoying school, and his enthusiasm for learning is exciting to see. He is getting better at writing his letters, and is learning new sight words all the time. He's also become good friends with a very sweet little boy in his class. It's wonderful to see him so happy!

At the end of April, Collin had his yearly hearing test. Thankfully there have been no changes in his hearing in the last year. He also continues to have acupuncture treatments every two months. With the end of pre-school came the end of OT and PT through the Capital Area Intermediate Unit, so Collin is back to having weekly OT sessions at HMC Outpatient Services. Collin is close to the maximum weight limit for the stroller we have. We don't use it often, but we definitely need it in situations where we have to walk a lot, far distances, or at quicker speeds. So his physical therapist at Hershey helped us order an adaptive stroller to have on hand. It should arrive in the next month or two. He also receives PT and OT once a week in school.

In July, Collin was seen again by his gastroenterologist. The last time Dr. Qureshi saw Collin, he started him on a new medication called Bethanecol, but we had to stop the medication after about a week because it made Collin sick to his stomach. At this time Dr. Qureshi is keeping Collin on the Prevacid and Carafate for his reflux. At some point he may want to do another endoscopy to see if Collin's inflammation and esophageal ulcer are healed, but he wanted to wait for at least a year since the previous endoscopy (done a year ago in September). He also suggested trying Collin on almond or coconut milk, since regular milk seems to cause Collin to spit up. He said Collin is not lactose intolerant, but he may have a sensitivity to a protein in milk. Switching to almond coconut milk has made a tremendous difference, and it has never caused him to spit up. Right now his reflux is also very well controlled. I don't know if it is because of the change in milk, the medications, or if Collin is growing out of it, but I'm happy Collin is feeling a lot better! We see Dr. Qureshi again in January.

Also in July, Collin had his semi-annual endocrinology check-up. Since being seen last November, Collin grew an inch taller. However, an IGF screening test done a few months before was low. Growth hormone, which is produced by the pituitary gland, stimulates the production of insulin-like growth factor (IGF), which is a hormone that mediates the effects of growth hormone and helps promote normal bone and tissue growth and development. However, unlike growth hormone levels which fluctuate throughout the day, IGF is stable in the blood throughout the day. This makes IGF a useful indicator of average growth hormone levels, and the IGF test is often used to help evaluate growth hormone deficiency or excess. So since Collin's IGF was low, he is short in stature, has pale skin and low energy, and has been off treatment for two years, Dr. D'Arcangelo felt it was time to look at starting growth hormone. Before doing this, two tests would have to be done:

1. A bone age test, which tells how many years are left for bones to be able to grow; this is done with a hand xray.

2. A growth hormone stimulation test. For a growth hormone stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then the person is given an intravenous solution of a substance that normally stimulates the release of growth hormone from the pituitary. Blood samples are then drawn at timed intervals, and growth hormone levels are tested in each sample to see if the pituitary gland was stimulated to produce the expected levels of growth hormone.

Collin's growth hormone stim test was scheduled for July 20. He's used to having to fast for anesthesia, so that part was no problem. However, both endocrinology nurses, who have done this countless times before, tried a number of times to get an IV inserted in Collin's arms. Thanks to chemo, his veins are so bad that after four tries, the nurses stopped. They couldn't bring themselves to stick him and dig a needle around in his arms one more time.  It really sucks watching your child sit, holding his breath but trying to be tough, not even crying even though it hurts and he wants to cry (and so do you), as he is stuck multiple times with a needle.

Without the growth hormone stim test, our insurance company decided not to cover the cost of Collin's growth hormone. Growth hormone costs somewhere in the ballpark of $85 per mg, and Collin's dose is 1.3 mg per day, six days a week. The cost is astronomical, and he will be on it for years, possibly even the rest of his life. The Four Diamonds Fund doesn't cover growth hormone either, due to the cost. Even though the need for the drug is treatment related, it is not a life saving drug, so Four Diamonds will not take that money away from life saving treatments or drugs. Thankfully, Collin's brain tumor diagnosis automatically qualified him for medical assistance through the state of PA, and the medical assistance agreed to cover the growth hormone. Between the primary insurance deciding not to cover the growth hormone, and then Walgreen's Specialty Pharmacy's inability to do anything correctly, we waited two and a half months to get the growth hormone. It wasn't until finally being able to switch to another pharmacy that the first shipment of growth hormone arrived in the middle of October. Once the drug arrived at our house, we had to go back to the endocrinologist's office to be taught how to give the daily injection. I gave Collin his first growth hormone shot as part of his new bedtime routine at home on October 20. After each shot he says "that didn't hurt at all," but I hate that he needs to have them in the first place.

In the beginning of August, Collin and I flew down to Houston for his annual check-up with his radiation oncologist at MD Anderson, Dr. Mahajan. It was a quick and uneventful visit, and she is very pleased with how Collin is doing. Collin's most recent labwork, done a few months ago, showed that he is still slightly anemic. This is a result of how hard treatment was on his bone marrow, and is not the kind of anemia that would be helped with an iron supplement. At this point, it may not ever improve.

Collin continues to be seen by the pediatric ophthalmologist every two months. In May, Dr. Ely could tell that the surface of Collin's right cornea was almost all the way healed, and instructed us to continue with the lubricating drops and Restasis. Due to fluctuations in the vision in Collin's right eye, she wanted to continue with the sticker on the left lens of his eyeglasses. This filter blurs his dominant left eye so that his brain will force the weaker right eye to function.

In July, Dr. Ely saw a very slight improvement in Collin's vision, although he is still considered visually impaired in the left eye, and legally blind in the right. She also explained that since his eyes are not perfectly aligned, he doesn't have depth perception. This can make things like curbs, steps, etc. tricky. Since it's been like that for so long though, he has adapted and can use shadows to help him see. She said that with his vision the way it was at that time (20/80 in his good eye), he would never be able to drive a car. If the vision in his left eye were to improve (to at least 20/70), he may be able to get a restricted license at best, which means no highways or night driving.

In September, the vision specialist for our school district joined us at Collin's ophthalmology appointment in an effort to make sure they were doing everything possible at school to accomodate Collin's vision challenges. At this appointment, Dr. Ely noticed more of an improvement in Collin's right eye. In July his right eye was 20/600, but since the filter on the left lens of his eyeglasses was forcing his right eye to work harder, the right eye had now improved to 20/300. If someone has 20/20 vision, it means they can see a specific sized letter/symbol clearly from 20 feet away. If someone has 20/200 vision, it means they can see a 20/20 letter/symbol at 20 feet away that someone with "perfect" 20/20 vision can see at 200 feet away. 20/200 is legally blind, but one still has significant vision capabilities at that measurement. Since the filter resulted in some improvement, the school vision specialist asked Dr. Ely about trying aggressive patching again. Dr. Ely agreed that if Collin would wear an eye patch over his left eye for six hours a day, we could take the filter off the left eyeglass lense, since he spent a lot of time "cheating" by looking under the lense anyway. If there was no improvement, or a decline in his vision the next time she saw him, the filter would go back on. We only have until between seven and eight years of age to preserve (and with any luck, improve) vision in Collin's right eye, so we are running out of time.

We explained to Collin that it was going to be very important for him to cooperate with wearing the eye patch for five to six hours a day. It took some reminding, a lot of encouragement, and occasional rewards, but he has finally been compliant. We had Collin's latest ophthalmology appointment on December 8, and both the vision specialist and myself were anxious to see if the patching had made any difference. We were hopeful, but we were both shocked at what the vision test showed. The vision in Collin's left eye improved from 20/80 in July to 20/60, and his right eye improved from 20/300 in September to 20/70!! His vision is almost the same in both eyes!! The improvement is HUGE, and better than any of us expected!! So what does this mean? Collin's eyes are still not perfectly aligned, nor will they ever be, so he still has no depth perception. Most of the time, his brain will still listen to the left eye and ignore his right eye. But the right eye has improved, and we will continue patching over the next few months to a year to preserve the vision in it. Eventually we will reach a point where even when we stop patching, the right eye won't get worse. And that means that if, God forbid, something were to happen to Collin's left eye, he'll still have functional vision in his right eye to fall back on.

When I last updated, it was nearly time for Collin's quarterly MRI. It was his first MRI in quite a while without his port, so they had to use an induction mask for anesthesia, which he has really hated in the past. In an effort to reduce some of his fear about the mask, I had asked if I could take home a mask the day they removed his mediport. Collin played with it at home, pretending he was a fireman. He got used to it on his own terms, and when they used it to put him under for the MRI, he handled it like a champ. They let him pick the scent of chapstick that they rub on the inside of the mask to help reduce the smell of the anesthetic gas, and he didn't complain or fuss once. Things could not have gone more smoothly, and we were thrilled that the MRI was all clear. That marked 2.5 years that Collin was cancer free!

Collin's next MRI was August 17. It was the last time they would scan his spine during the MRI, unless there are concerning symptoms in the future. This is another step forward, and it means his future MRIs will take about one third of the time we're used to. His next MRI will be of his brain only, and after that, he'll move to MRIs every six months instead of every four. Yet another step forward, but it's still more than a little nervewracking to me to be giving up that reassuring look inside as often as I'm used to.

Typically, we have a follow-up in clinic the week after an MRI, but in August we had the follow-up later the same day. This turned out to be a very good thing. Prior to the MRI, I explained to anesthesia that due to adrenal insufficiency from radiation, they would need to give Collin hydrocortisone while he was under for the scan, as per his endocrinologist. They said they would give him hydrocortisone if they saw any signs of distress during the mri, which as it turned out, there were none of. Well later that day as we sat in clinic for his appointment with his oncologist, Collin started to look very pale and kind of lethargic, began feeling nauseated, complained of a headache, and started coughing and sounding hoarse. We were a little puzzled by this, and then suddenly the nurse practitioner said, "he needs Cortef!" She recognized that his cortisol (stress hormone) level had probably dropped, and that evidently anesthesia never gave the hydrocortisone like they should have. She got a dose of Cortef from the pharmacy and gave it to him, and instructed me to give another dose at home that night and the next morning. That night, his stomach still hurt, and he was so pale that after his bath I could see just how beaten up his poor little body was. He had red marks all over his face from the tape they used to keep his eyes closed and the O2 canula in place during the MRI, and I counted 7 holes where they attempted to place IVs (3 in each foot/ankle, and one in his wrist). His throat hurt and his voice was still hoarse from the LMA breathing tube that goes down the throat during anesthesia. Next time he goes under anesthesia, I will have to insist they give him hydrocortisone, even if he doesn't appear to be in distress at the time. At the advice of our endocrinology nurse, he also now wears a medical alert necklace stating that he has adrenal insufficiency and needs hydrocortisone in the event of a medical emergency.

Since Collin's next MRI will only take one hour instead of three because they won't be scanning his spine, we've decided to see if he can handle staying awake for the scan. The nice thing is that he won't have to fast since he won't be getting anesthesia. The tough parts may be having to get an IV in for bloodwork, and having to stay perfectly still for an hour while they do the scan. He's scheduled for the scanner that has movie goggles, which will hopefully help the time pass more quickly for Collin. The next MRI is scheduled for this Friday. Prayers and positive thoughts are appreciated, and I will be sure to post an update over the weekend.

Finally, April 22 of this year marked five years since Collin was first diagnosed with a brain tumor that had already spread to his spine by the time it was found. He has already endured so much more in his short life than many adults will ever have to. Brain surgery. Being tied to a bed so he couldn't pull out the drain in his head. Surgeries to place and remove a broviac line, mediports, and an ommaya reservoir. Feeding tubes. Poison being dripped into his body. Morphine addiction. Nerve damage. Facial paralysis. Countless blood transfusions, CT scans, X-rays, and MRIs. Hair loss. Mucositis. Having to relearn how to swallow, talk, sit, stand, and walk. Secondary infections because chemo wiped out his body's ability to fight them off. Life threatening organ damage. Vision loss. Eye surgeries. Hearing loss. Reflux. An esophageal ulcer. Anxiety. Learning and memory challenges in school. Risk of stroke, secondary cancers, infertility, the possibility of never driving a car or living independently, etc. I'm in awe of how Collin has handled all of it. I know how blessed we are that he's still here, and doing so well. There is not a day that goes by that I'm not grateful... For Collin, our family, our friends, all of the amazing people who've come into our lives on this journey. For perspective, lessons, and countless blessings. For opportunities to give back, help others, and make something good come out of something terrible.

Thank you for the love and support that has helped carry us through the last five years.

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.