Courage for Kennedy – Journal


February 22, 2008

Two Topics

Category: General,Gratitude,Treatment – Melenie 11:28 pm

Yes, I have two separate things to talk about…oh, where to start…this should be a long one…are they ever short??

Hmmm…Kennedy had language therapy today (lt or slt) and did well despite being tired. Her random “holes” became evident when today her processing was right on! Sometimes not so much but today it was and the “holes” were somewhere else! Her processing you say? Why, yes, I did say that! JR and Kennedy played Slamwich! and Kennedy was right on the money. Visual processing, mind you, but processing none the less. Wow! She was taking names and kicking butt! Then later I gave her what seemed to be a simple instruction and she was totally lost. That’s how things are some times. Sometimes it is just easier to say “coat,” than “Kennedy, get your coat on.” You just never know how things will be that day. Also, when calling Keith tonight, to come to mom’s for dinner (she is just across the driveway, after all), Kennedy remembered to say “Hello, Daddy” first! We have been working diligently on phone manners. Kennedy would often just dive in to what she needed to say (before she forgot) and wouldn’t ask for the right person or even greet them. Now, everytime she calls, no matter who it is, I remind her to say “Hello” first. I’m hoping we have set up a pattern. We’ll have to see what happens the next time she calls someone.

She also had her physical therapy (pt) evaluation with AS. I’ve probably posted the therapists names all along but I have recently become aware that some may not want their names posted in a public forum with so many identifying remarks. If I have done that to anyone, and you don’t like it…please e-mail me and let me know. Let’s see…she appears to be scoring just where we thought she would…below 4 years old to about 4 1/2 years. It is also evident that her reflexes are not returning and may very well never return. Apparently, the pathways between her brain and her lower legs has been severly damaged because they don’t talk well to each other. No point in surgery as they don’t really have anything developed to fix this problem. She has amazing range of motion though! We’re not sure what we are doing right there…ballet maybe?…but we are not going to change anything in that department. She still hyperextends her knees when she walks and her pt is very concerned about that. It is important to protect her knees or the long term effects of walking that way could be devastating…man, I sure wish I had spell check on here! The goals are to get Kennedy to her best and protect her from further damage. So, she was cast for new AFOs (leg braces) which she is just “thrilled” about. At 7 years old, it is hard to comprehend if you can walk, run and dance to your standard why you would need to wear them. Falling is routine enough for her that it is simply not a reason. She’s excited now because they are new again, but we will have to come up with a motivation when that wears off. No night splints though, so that was good. We will be seeing AS for about 8 weeks to work on balance and coordination, so that will be fun. With deficiences in muscle tone, balance and coordination and at least 3 years behind in gross motor skills, riding a bike without training wheels will be impossible for now…at least we thought. AS is looking in to bikes with a lower center of gravity and other assistance to help her…and still look like a normal bike. Please pray for the finances to cover such a bike as I expect it to be way out of our price range. When Kennedy needed a stroller that would fit her, it cost $500!! We LOVE the stroller and are so thankful to the Wheel to Walk Foundation for the generous donation (a little plug here doesn’t hurt)! How we will get a bike I’m not sure…it’s hard enough just to cover her insurance premiums and medical bills alone…and she is no longer receiving chemotherapy!

Ok, topic number 2…I can’t be around cancer families. There…I said it. I feel horribly guilty and ashamed at this realization but I can’t hide it any more. Now, I know that families we have grown to love so much read this and to them, I am truly sorry. It is not personal and I don’t think it will last forever. For now, it is severely anxiety inducing. The secret is out. I know that you may think I am avoiding you…and I am…well, not really you…it is the cancer I can’t hardly face. It hurts me terribly to say it but at the thought of facing anyone’s cancer, I feel very physically ill. I do continue to follow several blogs and pray for all of you every single day, but like Kennedy, I just want it to go away. Not you…just it.

It is my heart’s desire to help families and I know that someday that will be my reality…but not today…and I know that God has something to do with that. I know that I will be of no use to any family where I am at now. I have much work and healing to do first. You see, I am broken. I have been trampled on and beaten down and am simply worn out. God needs to spend some time with me rebuilding before I can reach out. My faith is strong but my spirit is weak. I want a time out. I want some time to regroup and process this journey I have traveled.

It’s like I have been walking and walking and running and climbing and made it to the top of the mountain and it has taken so, so long to get here and while the view is spectacular…just a few lingering clouds that won’t give up…the weather is managable and for the most part, quite pleasant. But my boots are worn clear through and my feet are throbbing. I have overdeveloped leg muscles and my skin is battered and bruised. My back aches and as I look at my massive pack beside me, I feel so thankful I wasn’t carrying it at all but that my Friend…who never let me doubt the purpose of this journey and provided all that I needed to survive…He also carried that enormous pack. I never would have made it all these miles otherwise. I’m burned and scraped up but here, and just trying to rest for a moment and take in the view.

When I look far below me at the base of this mountain, everything looks so small and far away. I can hardly remember the valley I leisurely strolled through before embarking on this journey. I was moving so fast that I couldn’t appreciate the vast richness that surrounded me. It is absolutely breathtaking from this point of view. The grass in the meadow is so lush, it must have felt soft and fresh beneath my feet. I should have walked barefoot and really enjoyed it.

The trees are so tall and provided the most luxurious shade to rest under but I was just too busy and blazed right on through. The river from which cool, clear water flowed looks like just a trickling creek from this height but I heard it as I passed. I should have watched it as it flowed peacefully over rocks and logs bringing life and refreshment…but I had somewhere to be and something to do. Life surrounded me, nourishment was there to replenish me, cool shade abounded to protect me and I was too busy.

Then, I hit the rocks. No more cool grass, no sweet water and no comforting shade here. Just hard, hot, unforgiving rocks to struggle over and under. Occasionally, there would be an overhang that would provide shade and sometimes fresh water would flow from between the rocks but when I looked up, I was awed by the magnitude of what was still left to cross. I would turn to my Friend and beg to turn around, to repel down the side back to the valley floor and He would encourage me, promising me that the other side of the mountain was far more than I could imagine. More trees, lakes and rivers so clear you could see all the way down and grass so lush it would be like sleeping in a cloud. And so I pressed on. There was no point in going down anyway, I could trip and fall and that would be the end of me.

He would carry the pack the whole way….He promised. And He did. When it was more than I could bear, He handed me more manna or cool water…and sometimes nothing else would do but to carry me. He couldn’t carry me the whole way though. If He did, I could not appreciate all it took to get to the top. I could not feel the accomplishment of being pushed beyond my limits and succeeding. I never could have finished this race before. I was busy, overweight, overstressed and rundown. I was weak, emotional, whiny and selfish. He picked the worse climbing partner imaginable. I thought, He made a mistake. But He insisted that I was the one…and without Him…I wouldn’t have made it ten feet…not even over the first boulder.

And now, I sit. I sit and I reflect and it is time to rest. I see them…fellow climbers…fellow hikers. Some are so in shape…they just zoom up this mountain….hair flowing behind them…face towards the sky…no cares in sight…and sometimes their path up here is smooth with steps thrusting them forward. Others…their boulders cause them to hang sometimes by one hand…just four fingers…but He has a harness on them…He is safely attached…He is holding their one arm with both hands very tightly. He is never afraid. I ask Him why some paths up this mountain are so easy and some so crippling…I simply can not understand. Each path can only belong to one person. Each is uniquely different. Each person must take their path and overcome their boulders…some big and some small…some can walk beside Him the whole way…although no one on the mountain walks alone or is strong enough to carry their own pack! Others must be carried many times and must never let go of His hand….some walk hand in hand with Him. Those who try to climb alone are often seen slowing, stopping and falling. They are determined to climb regardless of the fact that their packs are pulling them down and their missing vital safetly equipment. It will take them longer to get to the top…they may never.

Here I am…I am breathing in and blowing out. I am looking at this mountain and taking it all in. Where I have come from. It’s another perspective up here. Not bad…just different. I can see more clearly. Sometimes on the mountain, I felt surrounded by storm clouds. It was pretty hard to see above or below me. I could only see My friend and exactly where I was at that very moment. Sometimes I couldn’t see even the very next step but my Friend told me exactly where to put my right hand and then my left foot and then my right foot and my left hand. He already knew where the perfect spot was. I was often grateful for the clouds. Had I been able to see how high the mountain really was or how steep the next cliff would be, I might have just let myself slide back down. I would have sat and stayed there in utter despair and disbelief. His words never failed to encourage me to just take the next step.

I have to sit and just think. I can’t yet tell the other climbers about my journey. I am out of breath. I can breathe deep enough, but at this altitude it is difficult to talk without running out of air and feeling as though I may suffocate. My Friend knows though. I don’t have to tell Him. He was there the whole time. No words need to be spoken…we are kindred spirits.

New climbers want so much for me come and get them. I just can’t. I don’t think I could climb this again. Not right now. My body and heart and mind just hurt too bad. Someone else will go. Someone who has had time to rest and heal their wounds. Whose heart and chest are no longer burning with the fire of running. Someone whose cuts are scarred over and whose bones have repaired. They are strong enough to get back down and up again. Several helped me. My Friend knew that seeing climbers who had already been all the way to the top and could come back down and climb again would renew my hope. They could help carry me and inspire me. He always chose wisely. Some climbers had a fairly easy trip the first time and could go up and down multiple times and some had a terrible go of it, but had healed well and were ready to help one more. Some just healed and pondered and moved down the other side of the mountain to the next valley. The thought of heading back down and then back up again was more than they could bear. He knew. He was all right with that and was happy to send them on their way. He would be there for the next journey.

Again, here I am. I’m not ready to go over to the other side, nor am I ready and willing to head back down from where I came from. I sit here. I think…I pray…I reflect…I pray and I wait. I don’t know how long I’ll be here. You can join me if you wish. I won’t talk much. I may not be as friendly as I would like. I’m pondering. I’ll be very glad you are here. I’ll smile and nod and can listen sometimes. And I’ll pray…for me and for you.

Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies. ~Erich Fromm

Damaged people are dangerous. They know they can survive. ~Josephine Hart

Prosperity is a great teacher; adversity is a greater. ~William Hazlitt

February 18, 2008

Feeling Better

Category: General,Treatment – Melenie 12:31 pm

It’s true…I am feeling better. I’m still not happy about the situation, but I am not feeling super angry or like having a pity party anymore. It’s time to pick up the pieces and move forward. Ultimately, my goal is to raise Kennedy in to the very best woman she can be…whatever that is. I want to take her strengths and help her to use them to the best of their ability and to help compensate her weaknesses as much as possible. I also want to give her tools to navigate through this world and teach her to be able to ask for what she needs and wants in an effective manner. Much the same things every mother wants for her child. That is my plan. So, we will be using the resources available (her language, occupational and physical therapists, Mrs. Darling (her tutor) and I will be reading, reading, reading and
researching, researching, researching) and I am working on some things (tools) to implement at home to encourage and teach her to be as self sufficient as possible.

I forgot to mention about her last appointment that Kennedy had her first blood draw without her port. It could have gone better. We numbed both arms in the crook of her elbow. It took several minutes to decide which arm to use (which had the more prominent vein) and they attempted the right one. Bad choice. It did not go well. They were unable to get the needle in enough to get blood. They pulled it out slightly, pushed it further in and dug around in her arm to no avail. Not good at all! Kennedy just started screaming her head off and crying and asking us to put her port back in! To her credit though, as angry, scared and upset as she was…she held very still. When it became obvious that it was not working, they pulled the needle out and bandaged her arm. She was still crying but went back to eating her Valentine’s candy from Adonna. Until they returned. She had no idea that they were not done…to her utter horror they wanted to try the other arm. Another nurse made this attempt and it went right in with the problems what so ever…didn’t even have to go in very deep…drew blood and they were all done and Kennedy (although crying) held totally still and didn’t feel a thing. Thank heaven for that! I don’t think either of us could have endured another failed attempt. But all is well now.

Overall, not a good day. We also got her OT and SLT evaluations back on Friday. It was what we expected but that doesn’t make it any easier to handle. Let me break down the results in the easiest way possible starting with language and the good news first:

In expressive vocabulary she scored at the 8 year old level! Woo Hoo! She could use tenses of verbs properly and was able to express herself very well.

In word class-expressive she scored at the 7 year 6 month level…almost right on target! Again, we were very happy here.

In word class-receptive she scored very nicely at 7 years 11 months.

In her ability to structure words, she scored at 6 years 11 months…really only about 5 months behind…not bad.

Her ability to formulate sentences, she scored at 6 years 4 months…ok, a year behind but still doing okay here.

Her ability to recall sentences was a little lower at 5 years 11 months but that was expected.

Finally, her ability to comprehend concepts and directions…5 years 3 months…over 2 years behind. This was expected and did not come as a surprise but none the less, not exactly what we would like for her.

Kennedy’s ability to identify pictures and use correct terms (expressive language) has improved significantly from before, so that is fantastic. We have been working with Kennedy by giving her the proper names for things and sometimes it is hard for her to recall the specific word (she called broccoli celery the other day) she always names with in the catagory and often self corrects. She is getting better at accessing that file in her brain.

We have come up with some workable goals and were approved for 24 weeks of weekly sessions with her therapist. Thank heaven for good insurance.

Now, for occupational therapy…not quite as well here. Again, I will give the catagory and then the age equivelancy.

For fine motor precision (activities such as drawing, folding and cutting), Kennedy scored between 5 years 2 months and 5 years 3 months…over 2 years behind (she is 7 years 4 months now).

For fine motor integration (activities including the reproduction of drawings and geometric shapes) she was in the age range of 5 years 8 months to 5 years 9 months…better.

For manual dexterity (reaching, grasping and bimanual coordination with small objects) she scored “below 4 years.” The test is for 4 years to 21 years and if your score is too low, it will only say “below 4 years.” How far? We are not sure…perhaps as much as the 3 year old range. Hmmm…that’s over 3 years behind. It makes perfect sense why buttons, zippers, snaps, shoe laces (although she can tie), brushing her teeth, using utensils, brushing her hair, writing, etc. can be difficult tasks for her.

Finally on this one, upper limb coordination…well, she scored in the 3rd percentile but it wasn’t too terrible. She was about 5 years 6 months to 5 years 7 months. Again, this was not a surprise to us.

What is so frustrating for us is that this is a child who was on time or advanced developmentally prior to treatment. She had wonderful verbal skills and coordination. Her brother was even teaching her how to play songs on the piano…an impossible task now. She had radiation at 5 years 5 months and as you can see…she really got stuck there. She had over 30 rounds of intrathecal (in her spinal fluid…think sometimes weekly and at the very least quarterly spinal taps with chemo injected directly in to her spinal fluid) chemotherapy between the ages of 4 years 7 months and 6 years 10 months during which time period she also was heavily sedated often and would sometimes spend up to 14 days in a drug induced coma state. She also lost her abilty to walk and talk at one point. Nearly every skill she has had to be relearned at some point…sometimes more than once. None of these scores surprise us but we are bothered by them.

So, we have goals we are working towards. She is making steady improvement (sometimes slow) all the time and is a very happy child. We have the most awesome therapy team who are willing to go the extra mile for us and always willing to research and come up with new ideas…we couldn’t ask for more.

Let’s see…this week Kennedy has her PT eval and I know Amy will have a plan for her legs and feet…that is encouraging.

Optimism is the foundation of courage. ~Nicholas Murray Butler

An optimist is the human personification of spring. ~Susan J. Bissonette

and finally…

A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties. ~Harry Truman

Mel

February 14, 2008

Oooh How I Hate cancer!

Category: Treatment – Melenie 10:51 pm

No, Kennedy’s cancer is not back (Thank God!) but I hate it anyway. I just hate it and I wish I could spit in it’s face! I honestly don’t think this experience will ever go away. It just has lingering effects that are constant reminders of what happened. Tonight, I am going to throw a pity party for myself. If you just don’t want to go there…tune in a couple days when I am over it.

Kennedy had her 6th off treatment check-up today. Wow! Nearly 6 months off treatment and still cancer free! That is worth praising for sure. For that I am so grateful. She is growing, her hair is fabulous (note the hair envy from mom), she feels really good and her counts are normal for any healthy child. The long term effects, however, are being stubborn and showing that they are in it for the long haul.

Before I get to that, let me touch on the other easier stuff. First, as some of you know, Kennedy appears to have lost all of her immunities. All those vaccines we gave her? For not. Ok, we don’t know that for sure, but she lost Hep B, tetanus and chicken pox for sure. In fact, the numbers were so low that her oncologist today plans to test her for more, but assured us that there is nearly a 100% chance she has none left. We pretty much annihilated those when we killed her bone marrow repeatedly for 2 1/2 years. He said he expected them to be low but not wiped out completely…that generally only happens when you have a bone marrow transplant. Lucky us. He did say to continue with the boosters for MMR and polio, although we won’t test for those, as her chances of coming across an active case of polio is not likely and the MMR series covers diseases that are much more harmful to very young children. She will be repeating Hep B and Hep A series, chicken pox (they are deadly in our house with Austin), Dtap, pneumoccal and I think Hib in addition to getting her boosters. I am going to talk to her pediatrician about how we want to do this as it seems like a lot to do at once and can’t even be done until her bone marrow fully recovers (hopefully) at one year post treatment. Hep B and A are absolutely essential with her liver issue. I did ask what would happen if she gets cut (we have horses and therefore manure which leads to tetanus) and he said it would be very, very bad. He made it sound like preventitively treating for tetanus in that case would be easier than giving her the vaccine. Yuck! One more thing to worry about.

Let’s see, what else…he did say he was concerned that Kennedy might be “developing” and asked me to watch for any signs. WHAT!!??!! It is not common but can occur when children get cranial radiation and because she seems to have been very sensitive to treatment (I don’t even have to go in to this with all the long term readers) this could be a possiblity. OH MY GOSH! He said if we can catch it early enough we can stop it, if not there are a whole host of new issues to deal with. We had to go through all the possible early symptoms and I am NOT happy about this. UGH! I may just ask him to check her hormone levels at the next visit to reassure all of us. Not what I needed! Could we just tack on something else to worry about here? Oh wait, I haven’t gone there yet!

Let’s see…her learning challenges…he feels that we have not even seen the full extent of those. Lovely. You mean there could be more? What happened to this just being a bump in the road??? He agrees with the language therapist that Kennedy needs to be tested for CAPD (a Central Auditory Processing Disorder). It is apparent to anyone who spends much time with her that this is an issue. I would rather not go through the list of symptoms, but she has about 90% of them. As I said in the previous post, she has some pretty big holes. Amazing strengths but big holes. He agrees that we need to use those strengths to compensate for her weaknesses and give her tools to work within the real world. On a good note, he thinks we are doing an amazing job with Kennedy and providing tons of resources for her (her tutor, slt, ot and all the work at home). He feels that homeschooling is a good choice for her and urged me to continue with the extra outside fun classes to help her continue to develop her social skills. She’s not the child who has an issue there. I am brainstorming ways to help her more…any ideas? She has to be constantly reminded…I mean every single time about most tasks (shutting the door when you come in, taking off your boots, saying Hello first when you call someone) but I hate to be such a nag. The oncologist said the full extent won’t be seen until about 5 years post treatment. Oh, goody.

Finally, her legs. As many of you know, this has been a constant concern. I have been asking everyone for at least 2 years what was going to happen here and every time I either got 1) it would go away after treatment or 2) they simply didn’t know but did not expect it to be long term. That changed today. To give a general overview, Kennedy began losing her reflexes about 2 months in to treatment. From there she quickly progressed to foot slapping when she walked, balance and coordination issues, neuropathy and finally to the point she was unable to walk at all. They could not stop the medication causing it until she got to the point that she could not sit unsupported and even when that happened, because they believed that weakness was caused by her ICU stay (and the events that led up to it), they still could not stop the vincristine. She literally had to learn to walk all over again and again and again. Even when she could walk, for a while she had a stiff legged rocking gate rather than actually walking because walking as we know it was simply impossible. Today she can walk and does it very well in comparison. However, she still foot slaps, she falls frequently and she does not run well. It is difficult and requires lots of thinking on her part. Now, for a child that has problems moving both sides of her body at one time, this is a problem. Stairs are still a problem. She no longer falls on them, but going up or down more than 3 is time consuming. The weakness is more apparent in her left leg than her right but both are not well. Her left foot turns in and her right is beginning to as well. This contributes to the falling and the difficulty in navigating. The nerve damage and muscle weakness in her left foot is severe. Without treatment it will progress and lead to more falling, a foot deformity, surgery, arthritis and probably broken ankles and feet. Read that again…I’ll wait. Her right foot? Not as bad but heading down the same path. Her braces are too small and I can’t get in to have new ones made until the end of March (when she’ll be cast) and then it is several weeks before they arrive. Lovely. I will talk to her PT tomorrow and see if we can slip in anywhere and then I will just make the appointment happen. I asked if he thought we should test for Charcot-Marie-Toothe Syndrome (as the other oncologist suggested) and he said it wouldn’t change much as far as treatment but he is thinking this may be contributing to the problem. These are all the things you see in CMTS but often they happen much later in life…her progression has been sped up by the vincristine. He does NOT think this will get better and strongly expressed to me how very important treatment is. He used the dreaded four letter…word…wheelchair. Kennedy does not like wheelchairs…not even for fun. He said that if she was going to recover she would have already started and would not be getting worse. He told me if I continue to ignore it and hope it goes away (ok, I’ve been in denial and was really hoping and believing it would get better like all the books said) the consequences will be severe and possibly crippling. I get it now. I haven’t seen him this serious since Kennedy was in the ICU. I heard him perfectly. He also said I need to be as aggressive with her foot/leg issue as I have been with her brain/learning issues. I do understand now…as if that wasn’t enough, she has tightening/shortening of the heel tendons that are getting worse. She has even begun to walk on her toes when it bothers her. Not good…that also would require corrective surgery if it continues. She has leg braces just for at night to address that issue…but again…too small. Those were given to her when she was 5yo. I really tried to get her feet in to them tonight but it was impossible without leaving red marks on her feet and with the bruise she got from Chazz stepping on her, there was simply no way. Great. I’m really doing well on my quest for Mom of the Year, huh?

So, let’s see…did I cover all of our conversation? Oh, he wants Kennedy to get more exercise as radiation can also cause problems with obesity. Lovely…with her genes that will be fun, huh? Hmm….what else. Did I mention her counts were great? Red cells were a little high but he said that was fine. We had a great time visiting with Adonna too. She is just perfect for Kennedy. Kennedy just loves her so much. I’m sure there was something else but I just can’t think of it right now…maybe it will give me something to write about this weekend.

Oh, we talked about how all kids react differently to treatment. True, and I expressed how angry I am about the lumping of leukemia kids in to one catagory. We are not like other leukemia kids. I’m going to slap the next person that tells me how everything will be just fine because their brother’s wife’s cousin’s boyfriend’s sister had leukemia and is now a genius in med school. Fantastic…that is not our journey but good for her. Leukemia is NOT one catagory. Not everyone has a 95% cure rate (in fact, most kids are not even close) as about 80% is the average only because more than 60% of leukemia kids have the favorable types and subtypes. 40%??? Not so good. It’s like a bell curve really and the kids who do well (there are a lot of them and that is fantastic) bring the curve up making the general population (and even other cancer families) think that it is all good to have leukemia. Please don’t ever tell a leukemia family that they should be happy they have the “good” cancer. They might slap you. Even if they don’t…they’ll wish they had. There are several forms of leukemia that have very poor outcomes and in addition to this, it is very insulting to call any form of childhood cancer (any cancer really) “good.” Kennedy’s long term survival rate? A whopping 60%…not exactly 95%. Not the worst…in some leukemias it is less than 5%. Betcha didn’t know that, huh? More kids die of leukemia than any other type of cancer. Sure more are diagnosed but if the cure rate is so high, why do so many still die? We have the longest treatment schedule (27 months for girls and 39 months for boys-minimum). That is daily chemo people! When we finally make it to long term maintenance, we have already endured at least 4 months of intensive (Kennedy’s was 1 YEAR!) and then they get to have daily chemo at home, monthly IV chemo and quarterly LPs with chemo until they finally finish. How is that the “good” cancer? Some still have radiation (Kennedy’s targeted ONLY HEALTHY CELLS with the hopes that we might get some leukemia cells we could not confirm were even there) and some have bone marrow transplants. No, it is not common for them to lose limbs or have major tumor removing surgery…true…but is not a “good” cancer to have-it is inoperable as there is no “mass” to remove…not without removing all their bones anyway. Even among other cancer families this is common language. Why? One mom even said to me (her daughter had a tumor) that we were so lucky that our child didn’t have a “real” cancer. WHAT???!! And long term side effects? We still have those as well. Leukemia kids have strokes, we have brain damage, they develop secondary cancers, they relapse, they have serious issues too. Please don’t diminish the pain we have by patronizing us by telling us our children have a “good” cancer or that it is not “real.”

Ok, I am really on a tyraid tonight. Sorry, just a lot on my mind. I’ll be better soon and after much prayer and time with Him, I will be ready to take on this new challenge. I’m off to gain much peace, understanding, wisdom and tons of grace.

Love to all of you…

February 10, 2008

How is Kennedy you ask?

Category: Treatment – Melenie 10:35 pm

Ok, so that last post with today’s date was not really written today…didn’t think so, huh? It was actually from more than a week ago but I had not finished it and since I wanted to write about things that have happened since, I decided to publish it anyway. So, here is the latest on the Kennedy front…

Kennedy did have her eye appointment and it went so much better than I had anticipated! She didn’t cry or pitch a fit, despite the fact that I knew she was very uncomfortable and very anxious. She answered most questions clearly, the ones she understood at least, and I helped with the rest by rephrasing for her in a way that she could quickly understand what was being asked. And the best news? Her eyes are doing just fine and look normal. Now, I know that the problems we are looking for won’t even show up until we are at least 5 years post treatment (peak period being 10 years post treatment) but I am going to rejoice in the good news where I can get it.

Kennedy also had her occupational therapy and language therapy evaluations since my last post. Hmm…what to say here…frustrated perhaps? I don’t have the official reports as of today, but the preliminary discussion was that Kennedy has tremendous strengths that put her way ahead of other kids her age. Good, huh? They also said, however, that Kennedy has enormous holes that put her way behind other kids her age…sometimes in the 3 to 4 year old range. Ugh! How in the world am I supposed to take that? Kennedy has ginormous issues with auditory processing…her ability to understand what she hears…what does this look like for her? Well, I’ll list the symptoms she has according to information from an audiology website: often seems to ignore people, is less attentive/productive in busy surroundings, difficulty following a series of spoken directions (she can often repeat what you have said but will complete less than half of what she was told), unusually forgetful of information previously memorized or of routines despite frequent reminders, difficulty with phonics approach to reading, confuses similar sounding words, needs to (or should) ask many questions to clarify task before starting; “doesn’t get the picture,” interprets words too literally, becoming confused or suffering hurt feelings, speaks “telegraphically”-omits facts or switches topic, so that audience cannot follow train of thought, one thing we notice in particular is that Kennedy will suddenly comment on a conversation that happened 1/2 hour ago as if it is still the topic. (symptoms taken from www.judithpaton.com/checklist.html) For another example, we have been working on phonics/letter sounds for more than a year and she still has a lot of trouble distinguishing between many of them. This is just one issue we are working on…she also has weakness in her fingers making it hard to write without using her wrist and forearm, decreased stamina when doing activities such as eating with utensils, brusing her teeth, tying her shoes and writing. Extreme difficulty performing activites bilaterally…using both hands at the same time whether doing exactly the same task or two different tasks. Problems with coordination, fine motor skills, yada yada yada…it just becomes a conversation I get sick of having.

Sure, we see the issues here at home. Every day, but we have developed ways to assist her, compensate her, help her…whatever…so things just don’t seem as bad. It isn’t until we are out in the world that her deficancies become obvious. And yet…there are people everywhere who think we are making a big deal out of nothing…after a few minutes with Kennedy, they will say, “there’s nothing wrong with her! She’s fine!” Ok, whatever. Yes, she is fine. She has so many outstanding qualities and amazing strengths that it can appear that things are going along great but if they spent time with her, they would see her shortcomings…and some are not so short. Ok, so I am venting here. Sometimes I just have to do that. Oh, and the bad thing about people thinking she is just fine is when she does finally show an area where she is weak or struggling, they act as if she is either dumb or just plain weird. Ugh! Now, how is that helpful???? Even those close to her sometimes don’t stop and remember that some things are VERY DIFFICULT for her. Things that should be easy for any other 7 year old can cause her to just shut down completely. Heck, even I can get frustrated but it is certainly not her fault. Ok, I am venting, but sometimes I just want to shake the hell out of people and tell them to KNOCK IT OFF AND CUT HER SOME SLACK! There, I said it. Not sure that I feel better though. The neuropsychologist told us in 2006 that it would be necessary for us to be the bridge between Kennedy and the world…an interpreter so to speak, or advocate…that becomes more obvious all the time. Now, before you all think that Kennedy is not doing well, she is…she just has areas that are a real struggle for her…they’re just not screaming “look at me, look at me!” and because of her strengths, there are times when she can mask them pretty well. Just please be patient when she can’t.

Ok, off that one for now…I’m sure I’ll have more when the final reports come in. The only good thing about having a therapist write this depressing report is that I know I am not making it up and going cuckoo! She has started OT again (Joannie had an opening right away) and will be starting SLT this Friday with Julianne. We are still waiting to get in with Amy for PT but hoping that will be soon as we are also having issues there.

Oh, and she has a clinic appointment on Thursday.

Well, she is doing just fantastic with her new tutor, Mrs. Darling. She raves and raves about how much fun she has and I am excited that Mrs. Darling understands Kennedy and is willing to work with us on getting Kennedy going in the right direction. Her creativity inspires me (as does her organization) and gives me hope after feeling like I’m hitting a brick wall with reading. She also told us about classes offered to homeschoolers and Kennedy is taking a fun science class along with a music class and choir. Kennedy absolutely LOVES music and it seems to help with recall for her. We did not look for anything academic as frustrating Kennedy will not help and truly we just wanted a supplement to what we are doing at home. She is doing well in math and loves history and science. Her handwriting is also improving but again, much repetition is needed in forming letters correctly. I absolutely believe that this will come with more repetition as that seems to be how most things work for her. The radiation oncologists told us that everything Kennedy learned prior to radiation she would retain but anything new she had to learn (she was barely 5 at the time) would take lots and lots and lots of repeating along with a multi-sensory approach to be remembered and understood. He wasn’t kidding 🙂

She loves her classes so far but had a little scare last Wednesday. Now, Kennedy has NEVER attended school…not even preschool and has very little (less than 2 weeks) worth of day care experience so this is a very new concept for her. On Wednesday, Mrs. Darling takes her to choir which Kennedy is signed up for with her daughter, Tink, who is older. Kennedy was very confused (despite us all telling her and reassuring her for some time) and thought that Tink would not be staying with her. Panic was the result. She had to literally be touching Tink (according to Kennedy) and would not participate until about 45 minutes in to class. Mrs. Darling and Tink are so wonderful and reassured Kennedy that Tink would never leave her during choir (if Kennedy had to go to the bathroom, for instance, Tink would be with her) and now she is feeling okay about the idea. For science and music both Austin and I are with her so she is fine but she wasn’t sure how to ask Tink or Mrs. Darling what she should do if they were separated or if that was going to happen (again, here goes the auditory processing issue) and began to panic and was unable to properly express herself. Everything seems to be okay now and we will again reassure her as she has expressed that she wants to attend choir, especially because she adores Tink very much.

Let’s see, we also got together with Kennedy’s chemo pal, Adonna, and went bowling and had ice cream. It was so much fun and even better that we were pretty much the only ones in the bowling alley as I took a very ungraceful tumble when I went too far on the lane and slipped! Not my best moment 🙂 The kids had a blast though but were definitely tired when all was said and done (Austin has classes on Thursdays at the same school).

Let’s see…we also had the horse runaway this weekend…you can find that at my other blog here and if you want to keep up to date on Austin’s rodeo stuff you can find that here and if you just want to know what’s going on in our lives as far as homeschooling…you can find that here. Yes, I know, I have a hard enough time keeping up with the blog…what on earth am I doing with 3 more? Well, sometimes I like to write about stuff other than Kennedy and cancer…hard to believe I know that I have other things going on in my life 🙂

Love you guys…all of you!

Mel

Not Rain…But SNOW!!

Category: Treatment – Melenie 9:45 pm

Yes, I know that I said it was raining the other night…and it was! It was nearly 40 degrees when I went to bed and RAINING! However, when I awoke the next morning at 8am (the perfect time to rise, btw) there was 4 inches and it was still coming down 🙂 The total so far? A glorious 10+ inches of snow with more predicted! It is SO beautiful and if you head on over to my other blog you’ll see it there. It is so amazing to see God’s handiwork…it is as if everything is coated in a lacy veil. Just awesome. Cold, but awesome. The kids could hardly stand it and are often seen tearing through the house with snowpants and coats on their way out to frolic with the dog and horses before they’ve even had a chance to have breakfast…oh to be young and not bothered by the biting cold! I just take pictures and watch them with my warm cup of tea, cozy behind the windows. I know, I should be out playing in it but I would be far too whiny for their liking. The downside was I allowed way too much playing and only accomplished about half of my to do list today 🙁

Kennedy has an appointment with the opthamologist tomorrow. He is a very kind and gentle man who specializes in children who have had cranial radiation either for a brain tumor or leukemia. It makes no difference to Kennedy how kind he is because she absolutely hates this yearly appointment. They check for any vision changes including cataracts but also any damage to the optic nerve as the back of her eye and socket were a highly targeted area. Why? Because enough kids with high risk leukemia were relapsing with clusters (not tumors) of leukemia cells in this area. The possible damage from radiation could lead to destruction of the optic nerve, cataracts and brain tumors…a relapse would drop Kennedy’s long term survival rate to 30%. We had to pick the lesser of the two evils. So, tomorrow is the day. The worst part? The dilation drops and severly bright light needed to view the optic nerve. While they do use drops to numb the eye, it is all trauma for Kennedy. Thankfully it is once a year and it is my hope and prayer that she will over time reconcile herself to this and the other follow-up tests needed to keep her as healthy as possible. Research has been done on long term survivors of childhood cancer and 2/3 will suffer with some kind of serious illness. Good follow-up is vital to quality of health and life. That, however, is difficult to explain to a 7 year old. So, to NW Portland we go!

The kids recieved gift cards for both Old Navy and Borders for Christmas so on our way home we are going to stop and spend them…how odd for them that they won’t be following mom through the history, literature, gardening, fantasy, bargins sections of Borders but will get to spend the ENTIRE time looking for kids books! Hip hip hooray!

Well, it’s off to bed before another busy day!!