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
Bobby Williams here, just wanted to say hi to you guys and tell Neya that she looked beautiful in the pics. Also, as always we are praying for all the little warriors and there families.
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