I was going to update tomorrow but since I know that if I put it off until I have tons to write, I only want to put it off more so here is the latest and I will plan to update this weekend.
Well, the snow is gone and the sun is shining. You would think that the kids would be heartbroken but this was the 5th or 6th time it snowed already this year at our house and because they homeschool they don’t get snow days so it’s not that exciting anymore…plus, mom won’t go anywhere in it so if they want to do something they have to wait until dad gets home and after working since before the sun rose he sure as heck isn’t going anywhere to do anything. I wasn’t a complete “Shrek” (as Kennedy likes to call us when we are being mean 🙂 after all, I did let them play in the snow and cut back on how much school work they had to do. We did miss 2 weeks at the clinic for counts checks and at least one pt and ot session-thankfully we are at a point where we can miss and nothing too serious will happen.
Kennedy is doing well in OT. She struggles and it is hard work but she perseveres and does not give up. We will be starting a new program for her that her OT has recommended called “Handwriting Without Tears.” For those of you who are homeschoolers, you have probably heard about it or use it yourself. While Kennedy can write most of her letters and numbers, her inability to hold her pencil correctly due to weak grasp in her fingers has caused her to form the letters incorrectly. She grasps pencils, crayons, her toothbrush, her utensils, etc. between her thumb and hand and uses her fingers for balance. She uses the strength in her wrist and forearm to do the things she wants to and because she already has weakness in her hands and arms, she tires quickly. We have purchased plates with high sides to help her and thick handled toddler utensils but she does give up soon and eats with her hands. Very frustrating considering she ate with utensils great when she was 2 years old. She is working hard and truly desires to regain those skills and I know she can do it. I’m just so thankful we didn’t have to wait any longer to get her started!
She had PT with Amy today and was just a bundle of energy! Amy re-evaluated Kennedy with the test she did in August to see if Kennedy was progressing. We both have concerns that she may have maxed out her potential at this point. She is doing well, but not really progressing anymore. Amy feels that Kennedy could be in PT indefinitely and while she would gain some benefits from it, she needs the opportunity to be a kid! I couldn’t agree more. And if she is not making headway, this may be a good time to change the plan. So, we are thinking (and I am praying) and we will regroup next week but it looks like we may do another month and then continue with a home program. Amy thinks we may be able to go as long as 6 months between evaluations but I would like to see us closer to 12 weeks. For a home program we will continue with ballet as she is gaining/maintaining coordination, balance and strength, we will also do horsebackriding, of course, for those skills and we have discussed swimming lessons to help with muscle development. We will continue with the yoga program as that helps in the above areas but also with flexibility and her attention/focusing skills. We definitely plan to see Amy (and hopefully Sean) outside the hospital as we have come to love and adore her very much. It really is a waiting game but it appears that Kennedy will continue to struggle with balance and coordination for many years. That’s ok. Her braces are made to last about a year and she is wearing them every day and doing much better with them on. Plus, you sure can’t beat disabled parking! 🙂 There has be a bright side after all! So she won’t be a triathlete or walk a tightrope…I can live with that!
Let’s see…tomorrow she has her back poke. Yippee! 🙁 She doesn’t mind, in fact, she runs to the procedure room, hops on the table and helps them set-up! What a goofy girl! Who would have guessed that a spinal tap and chemo would be so routine? I remember when it was the most traumatic event of the week! For me it is still upsetting as I know that it is possible for tests to come back with leukemia in her spinal fluid but it is also a reminder of how bad things have been. You know, we go along for 3 months living the good life and this just takes me back to the first days of her diagnosis when back pokes were just one more new thing to adjust to. One more thing I wish I could have gone on being nieve about. It just stinks. But it is over quickly, the results are in the next day and we go back to being happy go lucky for another 12 weeks!
You know, I was looking at pictures the other day of Kennedy before she was dx’d and it was so weird. I mean, I have scrapped pictures from her first 2 years and seen her but she was really still a baby. These were pictures of the year before we found out. She was so blond and so chubby. She was so happy and giggly and was often holding tight to her brother. It looked like somebody else’s child. I know that sounds strange but it was like I had no idea who that little girl was. When I think of Kennedy I only picture her the way she is today. She has been totally bald or had very short hair for well over a year and a half. When her hair has grown in, it is not the same hair she had. It was so strange. Even Kennedy looked at her pictures and commented about how different she looked with hair. She also kept saying she was sick as if that is all her life has been.
When she was first diagnosed, the thought of losing her hair was devestating to her. She was worried she would look like a boy and not look like her mommy (everyone called her my mini-me). When it fell out though, she wasn’t too bothered and was actually relieved when it was finally all gone. We let her cut it a couple of times and you all remember the time she cut it and stuffed it in her brother’s dirty sock! She liked the freedom of being bald (not having to deal with hair in her face, washing it, tangles, have her hair put up) but when people stare at her she is reminded that she is different and she doesn’t like that. She hates being called a boy and her and I have resorted to “boy comments” with “she’s a girl, thank you, she has cancer.” That shuts people up in a hurry. I use to be nice about it and worry about others feelings but decided that it is not her fault and it is her feelings I am really most concerned with. She has worn her fake hair occasionally and has loved the shock value of removing it in public! The other night we took her out to dinner (her brother was staying the night with a friend) and a woman came up to our table and said she had been looking at Kennedy all night and had to tell us what an amazingly beautiful daughter we had. She described Kennedy as angelic. We all graciously thanked her and wondered if she knew how much it meant to Kennedy. People do comment to her that she is beautiful but that time it really made an impression on Kenne. Many times she has commented that she doesn’t feel pretty, she wishes she had long hair or that she just looks ugly (when she had her feeding tube) and as a mom it just breaks my heart. We never think of it at home but I have learned that people are definitely a different breed. I never thought about what it must be like for someone in society to be different until Kennedy went through this and it can be really tough. While I haven’t said anything, the hair loss has bothered me tremendously. I have hated the way people stare or comment. I hate that no matter how good she looks during treatment, the fact that she has no hair tells everyone that she has cancer. You don’t think it does and you all can say it doesn’t make a difference but it does! People (imperfect strangers) have asked us what kind of cancer she has just because she is bald (or has short hair). One of the things I have struggled with as a result (and knew would be a problem from day 1) is that I HATE that people look at her and see her only as a kid with cancer. As if that is who she is! That is such a small part of Kennedy. She is a daughter, sister, granddaughter, niece, cousin, friend, ballet dancer, horseback rider, rodeo queen, student, lover of books, princess, artist, hair and make up stylist, fashion designer, she is imaginative, thoughtful, funny, smart, loving, kind, she loves horses and dogs and cries when she sees them being hurt on TV, she wants to be a mommy and homeschool her kids, she loves pink and wants to grow up to be a princess and somewhere in there, really small and if you look real close, she is also a warrior and is working to win the battle with cancer but it is NOT who she is. I wish they could see beyond the hair. You know, maybe God is working in me by not allowing her hair to grow back all this time. We know kids who have never lost their hair or who have beautiful full heads of hair during maintenance and no one knows they are sick but maybe God is working on my own vanity. Hmmm…not fun. Or perhaps He is speaking to me through my children again. I LOVE that He uses my children to teach me. How they teach us with their spirit and all their innocence. Who couldn’t help but love that? Kennedy has been commenting lately that she plans to grow her hair long and donate it to Locks of Love so other kids don’t have to be bald if they don’t want to. She also plans to grow up and work for Santa making dolls with removal hair for kids with cancer 🙂
Well, as you all know, I could go on and on and on and on but the night is late and tomorrow is a long day.
In His hands,
Mel
