Wednesday, December 9, 2015

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.


  1. The strength and love that you and your family have continues to inspire me! Collin is ALWAYS in my thoughts and prayers. -love Andra

  2. Go Collin Go! And wowza to your family, who tirelessly continue to give you the good life!! All the best!! xo Emily and Dan

  3. God be with you as you travel this path with your brave son.