Wednesday, April 9, 2014

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

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

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

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

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

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

Thursday, November 14, 2013 -- Big Changes

Since my last update, Collin has had seven acupuncture sessions. He tolerates them well. He has just a tiny bit of anxiety as the needles are placed (they are very tiny needles, and I use a little lidocaine cream to numb the sites that the needles go into, so I think it's more the anticipation than discomfort that makes him anxious) but as soon as they are in, he relaxes and dozes off. Then when the doctor comes back and removes the needles, Collin sits up and says "I didn't feel a thing!" He has been going twice a week, and although he's been on a little break while the doctor is out of the country, he will resume acupuncture next week. I definitely think the acupuncture is making a difference; Collin's right eye seems to be blinking more during the day, and closing more when he sleeps. I used to have to clean a lot of matter out of his right eye in the morning when he wakes up, but over the last few weeks I've noticed his eye is now almost completely clear in the morning. This makes both Collin and I happy, because my having to clean his eye tended to be a big ordeal, so neither of us misses it! I have also noticed more muscle tone in the right side of Collin's face, especially in his cheek around his mouth. His face looks a bit less droopy and more symmetrical. At first I thought maybe I was just imagining it, but a few other people have said they can see the change too. 

Relaxing during acupuncture

Right eye looking mostly closed during sleep

The right side of Collin's face looks less droopy

Collin also had his 6-month audiogram (hearing test) in the beginning of October. There were no changes, so his hearing is stable. He did however need a larger mold for his hearing aide, because he seems to have gone through a bit of a growth spurt! I finally had to take him shopping for some bigger clothes, which I hadn't had to do in over a year, so I wasn't surprised when the hearing aide mold suddenly wasn't fitting correctly anymore. It took a month for the new mold to come in, so Collin didn't wear his hearing aide for that time, but since he really only needs it when there is a lot of background noise, he didn't seem to have any trouble hearing without it. He was also fitted for new Sure Steps orthotics for his feet due to his growth spurt. At his 6-month endocrinology appointment yesterday, the doctor was pleased with how he's doing. He's in the 75th% for weight and the 5th% for height.

On Wednesday November 6th, Collin had his "routine" quarterly MRI. As always, Collin was very brave, and handled everything like a pro. It's tougher as he gets older; he understands more of what's happening and asks more, sometimes tougher questions. Nothing gets by him. He knew we were going to clinic first thing that morning to get a "tubie" in. This means that the anesthesiologist can put IV propofol directly into his mediport to put him to sleep instead of first using gas to put him to sleep and then putting an IV into his arm to put the propofol into. Collin hates the gas mask being put over his face, and he checked with me over and over to make sure that they wouldn't use the mask. He did great in clinic having his port accessed, but as we made our way down to radiology I could tell he was nervous. He wanted to walk (not ride in the stroller), but he walked very slowly. He kept making sure I was going to be right there with him, that I wouldn't leave his side. He said, "You're always with me, mom." Once all of the paperwork was signed and they were ready to administer the anesthesia outside of the MRI room, he bravely sat on the gurney. When he realized I couldn't be in the MRI room with him, even though I told him he'd be asleep by then, his little lower lip quivered. But he never cried. I hugged him and talked to him while the propofol was given, and kissed him as he went to sleep. Then as I left the room, I couldn't hold back my tears any longer. It never gets easier watching your baby be put to sleep, no matter how many times you watch it or how brave he is. 

Here is Collin bravely having his port accessed:

After the MRI was finished, I sat next to him as he began to wake up. It didn't take him long to wake up and start asking for lunch. Then his nose started bleeding. He was on his last round of accutane, so he was dry to begin with, and the oxygen they keep on him during the MRI dried him out even more. His nose bled fairly heavily for nearly half an hour, and they were getting ready to take us to the emergency department by the time it finally stopped. Collin was annoyed that the nosebleed kept us in recovery a bit longer and delayed his lunch, so he was happy to finally be able to eat and then go home.

The radiologist who was so great about reading the MRIs so quickly recently moved to another state, so I wasn't sure how quickly our oncologist would have the results. That evening she called to tell me it hadn't been read yet, but that she looked at it herself and didn't see anything concerning. This was reassuring, but it was still nice to hear an official "all clear" from her the next morning. So, we can breathe a bit easier until the next MRI in February. 

A little Sweet Frog to celebrate a clear MRI

Last Saturday evening, Collin took his last dose of vorinostat, and Monday he took his last dose of accutane. He has completed twelve rounds of maintenance chemo since finishing radiation, and is officially finished with treatment. I'm very happy about this, but very nervous too. We've been here twice before, so I'm not ready to celebrate just yet. Maybe after we've reached a year or more without relapse, I won't feel like I'm tempting fate by throwing a party. It feels very strange not to have to go to clinic every two weeks for lab work; now we don't have to go back until December to have his port flushed (this needs to be done every four to six weeks). Dr. Comito hasn't made plans yet to remove his port; she said we're leaving it in for a little while longer as kind of an insurance policy (the last time his port was removed, it had to be replaced a month later due to relapse), and I'm fine with that for now.

Taking his last dose of vorinostat

There have been some pretty big changes recently in Collin's therapies as well. Over the summer he was evaluated at the Capital Area Intermediate Unit. This means an evaluation of Collin's developmental level was done to determine what, if any, support services he could benefit from to help him get ready for school. The areas that were evaluated included child development, speech and language, occupational therapy, physical therapy, psychology, audiology, and vision. The evaluation determined that Collin would benefit from further speech, occupational, and physical therapy, and possibly some vision support. Since he qualified for early intervention services, an individual educational program (IEP) was developed. So, in addition to the occupational and physical therapy that Collin is getting at Hershey Medical Center, he began OT, PT, and ST through the IU. Since Collin's articulation has greatly improved, his speech therapist at Hershey discharged him from her care once he was scheduled to begin services at the IU. We've worked closely with her for three years, so it was very difficult to say goodbye to her, and I will always be grateful for the difference she has made in Collin's life. 

The speech therapy at the IU focuses on areas such as cognitive aspects of communication (e.g., attention, memory, and problem solving), social aspects of communication, language comprehension, expressive vocabulary skills, following multi-step directions, etc. For a few weeks, Collin had the IU occupational and physical therapies on Thursday mornings, and the IU speech therapy on Friday mornings. Then, after seeing Collin a few times, the speech therapist determined he would be a great fit for the language group that she runs on Thursday mornings. In this group, the skills that she was working on with Collin are practiced with a small group of up to six other peers. So, it's more like a preschool setting with a small group of four-year-olds, where they practice things like listening, recall, following directions, socializing with others, etc. This type of setting will be extremely beneficial to Collin, because his exposure to other children his age has been so limited before now. It will help prepare him for starting kindergarten next year too. While he is in this language group for 2.45 hours every Thursday morning, the OT and PT will see him there as well. So Thursdays will be busy and somewhat tiring for Collin, but they will be very fun for him too. This morning was his "first day of school," and he's been talking about it and looking forward to it for over a week. He picked out a backpack, he's been asking questions, making sure I would drop him off and pick him up, and reassuring himself (and me) that he would come back home afterwards. This morning when I dropped him off, he put his coat and backpack in his cubby, and didn't look back. As wonderful as it's been to see his excitement, it was a tough morning for me. Sure, it's hard for many parents to send their little ones off to school for the first time, and I remember shedding a few tears as I sent Neya out into the big world. But Collin...well he's never been away from my side as I've watched him fight so hard with everything he has just to live, and I've been by his side every moment to cheer him on and encourage him, and celebrate his victories. So as happy as I was to see his excitement to go to school and make new friends, I was also sad to turn him over to someone else for a few hours, and not be right next to him to watch him learn and make progress and have fun. But in the end, Collin had a fantastic morning (of course he can't wait to go back!) and even though I shed more than a few tears, I survived. After celebrating his first day of school with a special lunch, Collin recovered from his busy morning with a nap. :)

All ready for his first day of school

After school we came home to a great note from Neya

Going to school and having 3 therapies in one day is tiring!

So, over the last month and a half, there have been lots of changes. We've added appointments to our busy schedule, and taken others off. We've come to the end of treatment, and now we just wait and watch. Collin is slowly doing more "normal" kid activities, like participating in his very first kid's race at the THON 5K at Penn State, attending his first Hershey Bears hockey game, and going to "school." Change, especially a lot of changes in a short amount of time, is unsettling, but I'm trying to focus on the positives as we adjust to yet another "new normal." It is a blessing and an honor to watch this boy of mine grow and experience new things, and touch many others as he does.

Collin captured many hearts as he ran in his first THON 5K kid's race

First Hershey Bears hockey game

Halloween 2013 as Spiderman

Tuesday, October 1, 2013

Our time in Houston in August was good, despite the eye surgery being canceled. The worst part of that experience was not finding out the surgery was canceled until we got to the hospital. I figure if the doctor was sick enough to cancel, he knew it Sunday night, and I actually would have preferred a phone call in the middle of the night telling me the surgery was canceled. That way I wouldn't have had to put Collin through the motions of getting up before dawn, not being able to eat, etc. I quickly made peace with the whole thing though, and once we were back in PA, I made an appointment with the eye surgeon who had sewn Collin's right eye partially (and temporarily) closed to allow it to heal when he had a corneal abrasion in the fall of 2010. After a consult with him, we scheduled the surgery to place the weight in Collin's eyelid for October 22.

Since returning home from Houston in August, Neya started fourth grade, and now has dance class twice a week. She also decided she wants to play the flute, and had her first lesson last week. Collin has resumed all three of his therapies at Hershey, and will soon be receiving additional therapies through the county Intermediate Unit. He is currently in the middle of his tenth cycle of maintenance chemo. He has finally grown enough that I had to buy him some bigger clothes for the first time in about 2 years.

Last week, we had the amazing opportunity to participate in a press conference at the Pennsylvania State Capitol Building, where State Representative Kerry Benninghoff discussed House Resolution 389 designating the month of September as “Childhood Cancer Awareness Month” in Pennsylvania. During the half hour press conference, Representative Benninghoff, doctors (including Collin's oncologist), and parents (including myself), spoke about the importance of childhood cancer awareness. It was an honor to participate, and we had some fun after the press conference, when Representative Benninghoff gave the group of us a tour of the capitol building.

Childhood Cancer Awareness Press Conference, PA State Capitol Building, 9/25/13

Rep. Benninghoff, and some very special doctors and parents who also spoke that morning.

Collin's beloved oncologist, Dr. Comito.

Neya and Collin being supportive during my speech.

Rep. Benninghoff teaching us some interesting facts about the capitol building and how things work.

Trying out the desks in the PA House.

Last Friday after Collin's OT appointment, we went to the building at Hershey Medical Center where the medical records office is. I needed to request a copy of some records to take to our first IEP meeting this coming Friday. I filled out the release form, and completely expected to return a few days later to pick up the records, because that's how it has always worked in the past. Well, this time it was different. As soon as I filled out the release form, we were taken back to an office where a medical records staff person pulled up the records I needed and printed them right away for us. After about ten minutes, Collin and I left with the records we needed. Then something kind of incredible happened.

As we were getting off the elevator on our way back to our car, a doctor who was going to get on the elevator leaned down to look at Collin. It happened very quickly, and I'm not even sure what drew her attention to his face, but she stopped me and asked about his facial paralysis and his right eye not closing. Most people probably don't notice the asymmetry in his face in quick passing. I explained that it's due to nerve damage following his brain surgery in 2010. She then said, "I can help him, I want to help him." She asked if we could wait for her to run up to her office for some information, and I agreed to wait. Sure enough, just minutes later, she returned with a copy of a newspaper article. The article describes how she used accupuncture to help a woman who had nerve damage to her face following surgery to remove a rare tumor from her neck. This woman had experienced terrible pain for years, and was unable to open one of her eyes due to the nerve damage. After just a few sessions of accupuncture with this doctor, her pain was significantly reduced, and she was able to open her eye again! I told the doctor that we have surgery scheduled for the weight to be put in Collin's eyelid, and she said, "Don't do surgery, I can help him." I figured we have nothing to lose by trying, and if it prevents us from having to do another invasive procedure, it will be worth it, so I agreed to call and set up an appointment.

I can't describe the feeling I had as we walked to our car. I was shaking, and I had tears in my eyes. I have always said that all along this journey over the last three years, the right people have been put in our path at the right time. I thought about the things that had to fall into place that morning to allow that encounter to take place: the amount of time I spent looking something up on my phone before leaving the therapy parking lot (which I rarely do), the 10-15 minutes it took to wait for the medical records I hadn't expected to leave witsh the same day, down to us getting out of the same elevator (out of three) that the doctor was getting into. And of course the eye surgery not taking place in Houston in August. I had a profound feeling in my soul that this whole encounter was more than just coincidence, and I had to sit in my car for a few minutes to collect myself before driving home. I am very eager for Collin to see this doctor Friday and I'm hoping and praying she can make a difference!

This past weekend was the first of three canning weekends during which Penn State Students collect donations in their big blue and white cans.  They will be out again in October and November, so if you see them, please consider making a donation. Even if it's just some spare change you have laying around-no amount is too small! Every penny raised by THON goes to the Four Diamonds Fund, which benefits children like Collin treated for cancer at Penn State Hershey Children's Hospital in so many ways! We were very excited to see some canners Sunday morning!

Also, this coming Sunday, October 6, we will be participating in the Four Diamonds 5K Run & Fun Walk for the second time. It's just one small way we can try to give back to the Four Diamonds Fund for everything they have done, and continue to do, for Collin and so many other amazing kids! If you'd like to make a donation to our team, you can go to the 2013 Four Diamonds 5K Run & Fun Walk page, click the button that says "Donate To This Event" and type in Team Kratzer. Again, no amount is too small, every penny helps!

Monday, August 19, 2013

Well, today didn't go as planned. We got up at 4:00 am, and left the house at 5:00 am to be at TCH at 6:00 am. We were directed to the wrong place, and then I got a call on my cell phone saying that the doctor was sick and had to cancel the surgery. We chose to have this procedure done here because the ophthalmologist highly recommended this oculoplastic surgeon, and we were going to be here anyway, but this is the second time he's canceled on us (the day we flew down, his office called to cancel the pre-op appointment, and Bill had to make a few calls to get it rescheduled to a different day). I know there are surgeons closer to home who can do the procedure, so I'll make arrangements to have it done sometime after we get home. Sigh...I'm so frustrated!

Sunday, August 18, 2013

Collin's latest MRI was on Wednesday, August 7th. Everything went smoothly despite a late start caused by one of the MRI machines breaking down. Best of all, the results were what we were hoping for...no evidence of disease!!

Then on Friday, August 9th, Collin, Neya, and I flew to Houston. On August 12th, we had a one year post-radiation follow-up with Dr. Mahajan, the radiation oncologist at MD Anderson. She was very happy with how Collin is doing! There are still spots on his MRIs where the recurrent tumors were, but they are smaller and don't enhance (light up). Most likely the spots are scar tissue. We talked about my fears of recurrence after he finishes the last few rounds of maintenance chemo (historically Collin's cancer has disappeared while he's on chemo, but comes back soon after he's off treatment), and she reminded me that "we haven't been in this place before," meaning after having had radiation.

After seeing Dr. Mahajan, we went to the main hospital for Collin's neuro-psych testing, which monitors the effect of treatment on Collin's memory, cognitive status, etc. It was frustrating to watch because there were many questions he refused to answer, or answered incorrectly, even though I know he knew the correct answers. I guess that's what happens when a four year old boy becomes bored with answering a lot of questions! It will be six weeks or so before we have the test results.

On August 14th we saw the pediatric ophthalmologist from Texas Children's Hospital who straightened Collin's eyes in December. I was nervous about the visit, because I didn't know if there would be any improvement in the vision in his right eye because he cheats when he wears the eye patch. Much to my surprise, she did notice a slight improvement, and told me to keep patching! She wants us to follow up with the pediatric ophthalmologist at home in a few months, and she doesn't need to see us until next summer.

The beginning of the week was busy with appointments, but we've had some fun too. We visited some friends of my parents, and got to feed the turtles in a lake near their house...




We also got to spend an afternoon visiting Hannah, another medulloblastoma fighter we met last summer at the proton center, and her mom. Here is a picture of Hannah and Collin (notice they are both wearing their Peach's Neet Feet shoes!)




On Friday, we went to the Memorial City Mall so Neya could go to the American Girl store. As it turns out, Collin left the store with a new friend! They sell the Bitty Baby twins seperately in the store, so Collin chose a little boy. The staff at the store wanted to help make the doll look like Collin, so they put a hearing aid in the doll's right ear, and we got him a pair of glasses too. At home I have a tiny eye patch that matches Collin's and will fit over the doll's glasses. Collin is thrilled to have a friend that looks like him!




Yesterday morning we went to the Houston Zoo for a few hours. We enjoyed seeing a LEGO exhibit, as well as some of our favorite animals. And of course we had to feed the giraffes again!



















Tomorrow Collin will have a small surgical procedure at Texas Children's Hospital during which an oculoplastic surgeon will place a gold weight into his right eyelid. This weight will work with gravity to help Collin's eyelid close more. Hopefully it will keep his eye more comfortable and protected, and lessen the need for lubricating eyedrops.

Thursday, July 25, 2013

Well once again, I can't believe how much time has gone by since my last update. We've had a busy but good three months.

Collin came down with a virus in April that ended up going through all four of us. It lingered with him though, and he was admitted to the hospital for one night for observation. His doctor ordered a few emergency doses of hydrocortisone, which helped his body handle the stress of being sick, and was what he needed to get over the bug. At his next appointment with his endocrinologist a few weeks later, I told her about him needing the hydrocortisone when he was sick, and we talked about how he wasn't eating much and hadn't gained any weight in a while. She decided to put him on a two-week trial of a low dose of cortef. During those two weeks, he was also on accutane, and I noticed that the cortef seemed to be a huge help in preventing his skin from getting so dry. It also increased his appetite. So she decided to keep him on it, and told me to let her know if he gained too much weight. Well, this Monday in clinic, he was at an all time high of 18k (39.6lbs). I checked with the dietician, and she said he is below 3% for height, and around 50% for weight on the growth chart. This means he's not overweight, he's undertall (hey wait, that's my excuse!) Ideally for his height, his weight should be around 15.7k. I let the endocrinologist know about his weight, and asked if he could just take the cortef for the two weeks of each month that he is on accutane, and she said yes. Hopefully this will work well for him.

Collin's one night stay in the new Penn State Hershey Children's Hospital

At the end of May, Collin got his hearing aid. He has adjusted well to it, and says it does help him hear better. Here is a picture of him after he got it:

Collin's new hearing aid came with a matching friend

He also had a dental check up in June, and we found out he had his first cavity. It was very tiny, and the dentist was able to fill it quickly. The cavity was so small he didn't have to drill enough that Collin would even feel it, so he didn't even numb Collin before filling it (the needle would have hurt more then the drill). We were in and out in about five minutes, and Collin didn't even flinch! He was just proud that "the dentist fixed my tooth!"

Collin having his teeth cleaned

We've been enjoying our summer, and have finally gotten to do some of the "normal" family activities that we haven't been able to do in a long time. Collin loves music, and has enjoyed going back to Kindermusik classes. We took him to his first movie in a movie theater recently (to see Despicable Me 2), and he loved the movie and the experience (not to mention the minions!) And, we finally got to get away for out first family "just for fun" vacation since before Collin was born! We spent a week at the beach. Collin wasn't too fond of the sand (he definitely doesn't like getting dirty) but he did walk in it a little and sit on a towel on the beach. When he decided he was ready, he stood at the edge of the water and let the water wash over his feet and legs. He was content to stand in the surf for a while a few times, and he really enjoyed it. He had a little run in with a ghost crab who pinched his finger, but Collin wasn't bothered by it until I put a bandaid on him. That's when he got mad...at me, because he didn't want a bandaid! Silly Mom! It was wonderful to get away, go somewhere new, finally relax a bit, and not have to go to appointments every day. By the end of the week, he was telling me he didn't want to come home! (Neither did the rest of us!)

Very reluctantly playing in the sand

Letting the waves come over his legs

Hi Mom!

On August 7, Collin has his next MRI. Then two days later he, Neya, and I will return to Houston for two weeks. Collin will have his one year post treatment follow-up with his radiation oncologist at MD Anderson. He will also have another follow-up with the pediatric neuro-ophthalmologist who did his eye surgery in December. As long as everything looks fine, he will have what I hope will be the last eye surgery, during which the oculoplastic surgeon we met last summer will put the tiny weight in his right eyelid that will help his eye close more. Then two days after we come home, Neya will start fourth grade!

Three years ago today, while I held my 16 month old baby boy in my arms, I called my parents (who live out of state) and tearfully told them they had to get here fast because I knew my son was going to die. He had been sick for weeks, unable to eat much of anything, and throwing up what little bit he managed to get down. He had lost weight, and had gone from sweet and happy, to inconsolably fussy, to weak and lethargic. There was an emergency MRI scheduled for that afternoon, because a pediatric ophthalmologist was concerned about something he'd seen during a follow-up exam the day before. Hours after calling my parents, after the excruciating wait for the MRI to be completed, we heard the words, "There is a large tumor in your son's brain." Life as we knew it ended that day three years ago, and it would never be the same again.

Today I proudly watched my now four year old son enthusiastically participate in his OT session, where he continues to make incredible progress. It has been a long, hard journey since that day three years ago. There have been surgeries, long hospital stays with lots of chemo, a stem cell rescue with life threatening complications, two relapses, more chemo, gamma knife radiation, a drug trial, and radiation to his whole brain and spine. There has been three years of OT, PT, and ST. The very first goal was for him to turn his head to the right again. Since then, he has learned to sit, stand, and walk again. He has learned to swallow, eat, and talk again. He is still gaining strength, coordination, and motor planning skills. He has vision and hearing problems. He is brave, and strong. He is sweet, loving, and funny. He is happy, and joyful. He is inspiring. He is one of the most amazing children you could ever meet. He is Collin, my hero. ❤