Courage for Kennedy – Journal

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…

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