Friday, July 15, 2011

When Collin was still in the hospital, we tried to keep him busy any way we could...different toys, dvd's, etc. One of the things he loved (and still loves) was watching videos of The Wiggles. He knows all of the songs, and he sings and dances to them regularly. So when Bill found out that The Wiggles would be playing at the Hershey Theater, we knew we had to get tickets and take Collin to the show.

Then I thought it would be neat if Collin couldget a chance to meet The Wiggles in person, and I decided on a whim to call the theater box office. I explained just how much The Wiggles meant to Collin and what they've helped him get through, and asked whether it would be possible for Collin to meet them. Phone calls were made and emails were sent, and in the end we received an email offering a meet-and-greet. We were so excited, and I couldn't wait to see Collin's reaction when he was face-to-face with The Wiggles!

The concert was yesterday. We had to be there an hour before the show. There were about four or five other families there for the meet-and-greet aswell. We sat in the theater, and talked to two of the dancers. Then Sam, Murray, Anthony, Captain Feathersword, and Brad (who was standing in for Jeff who had recently had surgery and wasn't able to travel yet) came out, and spent time talking and posing for pictures with each family. They were SO very nice!

The concert was a lot of fun, and Bill and I enjoyed it as much as all the kids there. The Wiggles put on a great show; they were very interactive with the wholeaudience, and genuinely looked like they enjoyed every minute of the show! I had expected Collin to sing and dance along as he does at home, but instead he just watched and took it all in. He did fall asleep for a while in the middle (it was his normal naptime, and he couldn't fight sleep any longer), but he woke up before the end of the show. At the end of the show, he kept waving to the stage and saying "Wiggles, Wiggles!" Now, Collin loves to wear his Wiggles concert t-shirt and look at the pictures!

Sunday, July 10, 2011

Recently Collin's physical and speech therapists used certain words to describe some of the difficulties he has. I have done some quick research (Google) to try to understand the terminology.

His physical therapist mentioned ataxia, which describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects. It usually results from damage to the cerebellum (where Collin's tumor was), the part of the brain that controls movement, muscle coordination, and balance. It can affect any part of the body. When it affects mechanisms of walking (as it does with Collin), there is instability with a tendency to fall. The gait appears "drunken" (I've told Collin he walks like a drunken sailor many times!) His balance is also affected; he may fall spontaneously or be unable to compensate for variations in the ground or a mild push from the side. He is making progress with walking, and the slower he walks, the better he does (the less he falls). I asked if the ataxia will eventually go away, but of course his physical therapist can't give me any guarantees.

His speech therapist used the words Apraxia and Dysarthria.

Apraxia of speech is a motor speech disorder. Children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. One of the most notable symptoms of apraxia is difficulty putting sounds and syllables together in the correct order to form words (I notice this in Collin). Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia is the incorrect use of the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Dysarthria is a condition that occurs when a nerve, brain, or muscle disorder makes it difficult to use or control the muscles of the mouth, tongue, larynx, or vocal cords, which make it difficult to pronounce words. Dysarthria often is characterized by slurred or slow speech that can be difficult to understand. In Collin's case, the dysarthria is the result of damage due to the location of his brain tumor, and from damage (from the tumor surgery) to the nerves that supply the muscles that help him talk. Collin is continuing to make progress with his speech, but no one knows how long it will take for the damaged nerves to recover, or the extent to which they will recover.

Friday, July 8, 2011

Wow! I've been meaning to write an update for a while now. I didn't realize I haven't written since the middle of May! I guess the busier life is, the faster time seems to fly by...

Neya had a great year in first grade, and is enjoying her summer. She had her ballet recital a week after school ended, and I was so excited to be able to attend this year! She danced in three numbers and did a great job! The recital was spectacular. I signed her up for our township recreation program's summer camp, which runs for three hours a morning four days a week for the month of July. She seems to be enjoying it and at least it gets her out of the house and she can spend time with friends. Of course the added benefit is not having to drag her to all of Collin's therapy and clinic appointments. When she does accompany us to therapy appointments, she enjoys being involved and helping Collin, and he enjoys having her by his side, but eventually she gets tired of going with us. We (and by that I mean Bill!) have finally been able to teach her to ride her bike without training wheels. I feel bad that it has taken this long, but last year we just never gave it a thought. So since her bike was a few years old and her knees where hitting the handlebars, we took her shopping for a new bike last weekend. She's very proud of her new bike!

Collin continues to go to therapy every week, and clinic appointments every other Monday. He is doing well and making progress in therapy. He is now walking very short distances in the house without holding on, but his balance still needs a lot of work. Between not walking for a year and the location of the tumor, the balance will take a while to come back (if it comes back completely). Today his physical therapist reviewed her current goals for him, and since he has met many of them, she has decided to give him a few weeks break. We have reduced occupational therapy to once a week for the summer to lighten our schedule a bit with Neya being out of school. Collin is doing very well feeding himself, but continues to need to work on strengthening his right hand. In speech therapy he continues to work on strengthening his facial muscles, and of course learning to speak. Progress is slow, but he continues to try new words all the time, and we are learning to understand him better, which definitely makes life easier (sometimes)! He understands everything we say; imagine how incredibly frustrating it is to him when we can't understand him! During his last hearing test, the audiologist still couldn't get a complete read on his right ear, but he really seems to have no trouble at all with hearing. The eye surgery in March didn't help his eyes the way we had hoped, and they have turned in again. His ophthalmologist has recommended two more surgeries, but nothing will be done until he is finished with his maintenance chemo, which will be sometime in August. He is eating well and has even been called chubby, but unfortunately his height has not increased in quite a while (another side effect from chemo). His hair is growing, and he even needs another haircut!

Even though I thought I was handling my stress pretty well, I guess I was wrong; I developed my first case of shingles last week. Since Collin's vaccines were wiped out with the chemo and stem cell transplant, he has no defense against chicken pox (the dormant virus that causes shingles) so it would be very dangerous for him to catch that from me now. His oncologist had me bring him in to the clinic Wednesday for an IVIG (immunoglobulin) infusion to give his immune system a boost. I'm just praying he doesn't get chicken pox from me. I try my best to care for him and protect him, and never thought I could be a threat to him.

Along with the shingles, this has been a tough week on my emotions. I was very worried for our little friend Caiden, who has been unable to put weight on his right leg since the end of last week. X-rays didn't reveal any breaks or fractures, so the oncologist ordered an MRI for July 5. When Caiden showed symptoms of his brain tumor last year, inability to bear weight on his right leg was one of his symptoms, so there was fear his cancer had returned. Thankfully the MRI showed no tumors, but it did show that his bones are very thin as a result of the chemo he had. He is now in a cast for three weeks. Also, on July 4, a little six-year-old boy whose parents are part of the online Medulloblastoma group we belong to earned his angel wings quite suddenly. The loss of Tony and fear for Caiden, as well as some shocking news about one of our doctors, really had me in a tailspin. As if that wasn't enough, Collin's next MRI is coming up on July 21, and "scanxiety" has set in early for me. Collin falls regularly, and has had a few episodes of looking nauseous or vomitting. Now, I know there are perfectly rational explanations for these occurrences: he is walking more on his own, and since his balance is still not great, falls are expected. He falls more when he tries to walk too fast. As for the nausea/vomitting, he didn't have the anti-emetic the morning of those days, and vomitting is also a common residual effect from where his tumor was located. But it's hard to see your baby take face plants into furniture or the floor regularly, and it's frustrating to see him throw up his dinner after he happily ate it. And since falling all the time and throwing up were symptoms of his tumor last year, it's very hard for me to just assume these things mean nothing. As his mom, my fears that his cancer will return will never disappear, and they easily take over at times. I know of kids who have relapsed even though they are on chemo, and/or showing no outward signs of recurrence. I know just how quickly the rug can be pulled out from under us, even if we don't see it coming.

Please continue to pray for healing for Caiden, Conner (who I wrote about in May; he has just returned home for a week long break after four long months in the hospital before he continues his treatment at CHOP), Collin, and all of the other children who are undergoing treatment and/or dealing with the ongoing side effects of treatment. Please pray for comfort for Tony's wonderful and devoted family and friends, and all of the other childhood cancer warriors who have lost their battle. Please continue to pray for the wonderful doctors, nurses, therapists, and other caregivers who do their best caring for the children battling cancer. And please continue to pray for the cure that is needed so desperately.

Neya before her recital with some of the awesome students from Penn State Altoona THON who helped make her day special...

...and after the recital with some of her beautiful flowers

Neya on her new bike and Collin in his car, ready for a ride

Collin finger painting on the mirror with shaving cream during OT

Collin giving in to the Benadryl during his IVIG infusion Wednesday

Tuesday, May 17

Just a quick update. Collin had a clinic appointment yesterday to re-check his creatinine level. I found out this afternoon that it was back down, to .34. So this evening he can resume his maintenance chemo, and the Acyclovir.

This morning Collin put two words together. He said "bye bye Neya," instead of just "bye-bye." I think that is only the second two-word phrase I've heard him say, other than when he says "all done." I was excited to tell his Speech Therapist! He did well in Speech today; he blew ten bubbles in a row off the wand, which is not as easy as it sound with right side facial paralysis. He is also recognizing more of his word cards and needing fewer cues to say the words. He did well in Physical Therapy as well today. He enjoys practing going up and down the steps, and kicking a ball. His Physical Therapist joked that she may start a pool for people to guess when Collin will start walking on his own because he's so close, and give the proceeds to the Four Diamonds Fund! He manages to take about two to three little steps on his own before he falls. I figure once he gets the hang of it, there will be no slowing him down!

May 12, 2011

Collin has been getting a break from chemo this week since his creatinine level was found to be elevated Monday. He is also getting a break from his twice daily dose of Acyclovir, an antiviral drug being used to protect from chickenpox and shingles (which would be dangerous for him to contract) since the drug is also filtered through the kidneys. A normal creatinine level for someone Collin's age is .3 to .7; his level typically runs between .33 to .38. On Monday his level was .73, so even though it's not too far above the high end of normal, it's higher than usual for Collin. By giving his kidneys a break this week, his creatinine level is expected to be lower next Monday. Then his creatinine level may be checked more often the next time he receives Accutane.

The Accutane has also taken a toll on Collin's skin. As I mentioned during his first round of the drug, it can be very drying. I kept his skin and lips moisturized during his first round, and it didn't seem to affect him too much. During the second round though, it seemed to affect him more, and more quickly, than the first round. His cheeks, lips, arms, and legs are red and look sunburned, and are dry and flaky despite the moisturizer. Hopefully this will clear up soon!

I would like to ask for prayers for another little cancer warrior named Conner. He is a sweet five-year-old boy whose family learned today that his cancer has relapsed a second time. He is fighting hard, and at the same time is trying to heal from neurological toxicity caused by a chemo drug. The challenge ahead is to find a chemo drug that will be strong enough to fight his cancer without causing more neurological damage. Having been dealt some tough blows during Collin's journey, I can imagine the despair is parents might be feeling after today's news, and my heart is breaking for them. Please pray hard for healing for Conner, strength for his family, and wisdom and guidance for the doctors treating him.

May 9, 2011

I had a very nice Mother's Day yesterday, spent with family and friends. It was a joyful day, such a welcome change compared to Mother's Day last year, when I didn't even know if Collin was going to survive. It really is amazing to think about how far we've come in a year.

Today was another busy day, but it was a good day. Collin had speech and occupational therapy this morning. He worked hard in both therapy sessions, and I expected him to be asleep before we left the parking lot. But he stayed awake as we drove over to the other end of the hospital campus. We had lunch, ran into Caiden and his family (he's doing well, he looks great, and his hair is starting to grow back), visited our nurses on 7W and met another friend (a wonderful mom of another tough fighter), and then headed back down to the clinic for Collin's next appointment. Collin's weight was 14k (30.8lbs) which is the highest it's ever been. He's definitely been eating well! Today's visit was just to check his bloodwork, so once the nurse drew blood, we were able to leave. It wasn't until the ride home the Collin finally conked out and napped for about an hour.

Later this afternoon, a nurse from the clinic called me with the CBC part of Collin's lab results. His white blood cell count was a little lower than it's been recently, as was his ANC. His ANC was still above 1000 though, so he still has a bit of an immune system. Then early this evening, his oncologist called to say that his kidney functions had come back, and his creatinine was high. This indicates his kidneys are not filtering his blood the way they should be. Collin just finished his second round of Accutane this morning, and his oncologist said she has seen Accutane affect renal function. So, she is having me hold the chemo drug Etoposide for this week to give his kidneys a break, and will have his bloodwork re-tested in one week, instead of the usual two weeks.

May 5, 2011

In my last blog post, I mentioned that Collin had his six-week post-op visit with the ophthalmologist who did his eye surgery in March. It was a frustrating visit; to make a long story short, there was a lot (ie. too much!) of waiting, and in the end we only saw the ophthalmologist for about three minutes, and I never got to finish talking to him. He emailed us a copy of his visit summary & recommendations. Collin's eyes did not respond to the surgery as well as the ophthalmologist originally expected, (and I actually think the right eye has turned back in a little bit since the surgery), and he is recommending two more surgeries. I'm not sure what his timeline is for the second surgery, but the third surgery would have to be at least six months after the second surgery. When I discussed his recommendations with Collin's oncologist, she recommends waiting until Collin is finished with his maintenance chemo, which I believe will be sometime in July. So as things stand now, nothing further will be happening with Collin's eyes in the near future, other than possibly seeking a second opinion. So, I continue to patch his left eye for two to three hours a day. I recently decided to start patching him during his therapy appointments so he is kept more occupied and distracted while the eye patch is on. Originally I was purposely not patching him during his therapies because I was afraid the eye patch may hinder his therapy, but interestingly enough, it hasn't gotten in his way at all. There are actually times when he seems to do better with the patch, so his therapists and I have speculated that the patch probably takes away the double vision we assume he has, and allows him to see things easier. Oh how I wish Collin could tell us!

Collin has been doing so well in his therapies. In speech therapy, he continues to learn new words, and his ability to blow a bubble on a wand or to blow a plastic horn hard enough to make it whistle is progressing. Yesterday in occupational therapy, he used his hands (with some assistance of course) to make a Mother's Day gift for me; he decorated a styrofoam cup with crayons and stickers, scooped soil into the cup, put marigold seeds into the soil, and poured water into the cup. Today in physical therapy he worked on balance and walking, and even though his legs were getting so tired they were shaking and we kept encouraging him to take a break, he wanted to keep going. He usually works so hard in his therapies that he is asleep before we leave the parking lot!

Today I took Collin shopping for new sneakers, and then decided to take him to the barber to get his hair trimmed. It was his first real haircut by a barber. I wasn't sure how he would handle it, but he sat in the chair and was a perfect angel the whole time! I guess after everything he's been through, a little haircut isn't scary at all! It was a beautiful and fun day, and it was nice to take Collin out to do some "normal" things.










I don't want to forget to mention that May is Brain Cancer Awareness month-spread the word!