Thursday, July 21, 2011

Thursday, July 21, 2011

Collin had his quarterly MRI today. Originally he was given an 8 am timeslot, but we got a call last night that the MRI machine had broken, and they pushed  him back to 9:30 am. I called before leaving the house this morning, and thankfully the part needed for repair was flown in and got to the hospital this morning, and the technician was almost done fixing the machine. I was worried about how Collin would react when I told him he couldn't eat breakfast, but he handled it pretty well.

In the MRI waiting room, Collin looked like he was going to cry, but he leaned his head against mine and stayed strong. I managed to distract him, but seeing him nervous made me want to cry. I was so proud of how brave he was! Then when the anesthesiologist put the mask over Collin's face that would deliver the gas to put him to sleep, he kept saying "shirt, shirt." He was concerned about his Wiggles t-shirt that I had taken off so the anesthesiologist could access his mediport once he was asleep! After the MRI as Collin was waking up, the nurse asked if Collin is always so calm and easygoing, because he wasn't fussing much, he was just cuddly and asking to get dressed.

Once Collin was being put into the MRI machine, I headed up to the 7th floor to visit our nurses. I also ran into little Sean's dad. Sean is doing well, and should be completely done with his treatments in October. Their journey has been even longer than ours; please continue to keep Sean and his family in your prayers!

I didn't expect to get any MRI results until sometime this evening, but our oncologist's nurse called this afternoon. The MRI was ALL CLEAR!!! I can't stop smiling, I am so happy and relieved! Thank you for all of your prayers and positive thoughts! Please keep them going for all of the kids in this fight, their families, and the dedicated doctors and nurses that care for them!

Tuesday, July 19, 2011

Monday, July 18, 2011

Collin had an episode of vomiting last Friday that really made me anxious. He had eaten dinner, and was sitting in the recliner watching Elmo on the iPad when out of the blue, with no crying, gagging, or coughing beforehand, he threw up. He had no fever, and he seemed perfectly fine before and after the episode. Even though I know kids who have had tumors where Collin's was tend to throw up easily, the incident really increased my (already high) anxiety, because vomiting for no apparent reason was one of the first symptoms of the tumor and I dread relapse. Thankfully he has not thrown up since Friday, and seems fine. He also shows no evidence of chicken pox (and my shingles are almost gone-yay!)

Today at his routine clinic visit, I talked to his oncologist about the vomiting, but she wasn't concerned at all. She wasn't surprised or concerned either that he hasn't grown taller in quite a while; she said it's not unusual for it to take at least a year off treatment before kids start to grow taller again.

Collin's last dose of his current chemo (Etoposide) will be July 26. He has two more rounds (14 days each) of Accutane, and then he will be totally finished with chemotherapy by the end of August. On one hand I am excited to be able to stop giving him measured doses of poison. I know it is progress, a milestone in his treatment. However, it's scary as well, because not giving him chemo means we're not physically fighting the cancer anymore. It's a terrifying thought.

Collin's oncologist talked about something (coincidentally) called "Collins' Law." Basically it's a formula for predicting "risk for recurrence of embryonal tumors including medulloblastomas." It is determined by taking the person's age at diagnosis (16 months for Collin), and adding 9. So, the next 10 months are critical; if by May 2010 (25 months from Collin's original diagnosis) he is still free of any clinical evidence of recurrence, he is considered "cured." There is still a small risk of secondary cancer years from now that can be caused by the chemotherapy Collin has received over the last year and a half. So please pray that Collin's next MRI this coming Thursday still shows "No Evidence of Disease." As soon as I know the results, I will share them!

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

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