Courage for Kennedy – Journal

October 11, 2005

Category: Treatment – Melenie – 1:36 pm

Ok, I have got to get this thing caught up. I know, I know, I am so far behind (weeks even) that it is not even funny. I do apologize. It hasn’t been for lack of information though, quite the contrary. Things have been absolutely crazy and every time I think I’m going to be able to update-something else comes along to distract me.

For instance, the other day, I was working hard on updating this site (had tons of info already typed) when I got a call that kicked me off of the computer deleting everything I had spent over an hour writing! Oh, I hate dial-up! It turned out to be my mom-my dad was in route to Providence Portland ER with chest pain and dizziness. Turned out to be sinusitis but I didn’t know that at the time. Then, that afternoon, I was rough housing with Austin when I deflected his attack and he hit his head on the desk that is flush with my bed and cut his head open. I tried frantically to call Keith, eventually calling his boss to radio him and it turned out he was downstairs already! We took Austin to Dr. Skau’s office and he now has 2 staples in his head thanks to his momma! There goes my award for mother of the year!

Ok, back to the update. Where was I? Oh yeah…while Kennedy spent the week recovering from her first round of high dose Methotrexate, she was evaluated by physical therapy, occupational therapy and speech therapy. Remember I had said previously that Kennedy had lost all of her reflexes? Well, that means all of her reflexive muscles are weak and not working well. These muscles are those like your diaphragm which help project her voice and take deep breaths, the muscles that lift your foot when you walk, balance muscles, swallowing, etc. We had noticed changes but because we see her everyday they were gradual to us. My father in law however, noticed right away as he had not seen for several weeks. We are working on exercises at home and although she still has many doses of Vincristine left (which is the drug that affects her neurologically) we can hopefully slow down the process and help those skills come back sooner rather than later. Her ability to walk and run has been affected and department store style shoes only made this worse with their thick soles and extra material. While searching desperately for shoes that would be more like walking barefoot, I remembered the beautiful pair of Soft Star Shoes she had had as a baby. I checked out their website and much to my delight, they had them even in “big kid” sizes. We were in the hospital at the time so I had my mom order her two pairs to try and after explaining to them the reason why we needed them, they gave us a 15% discount! WOW! As if that wasn’t enough to love them, their located right here in Oregon (Corvallis to be exact-Go Beavers!) and after our first order came up with the “Kennedy Special” for future orders that give us 25% off shoes for Kennedy! What a blessing! Please check them out in our links as they have the most beautiful moccasins for adults too! Tell them “Kennedy sent you” when you talk with them. Okay, we now return to our regularly scheduled programming at the all Duval channel!

So, she had her evals and it turned out that speech was the area that brought the most concern. What a shock to us! We had noticed that her speech was more slurred, quieter and she was gagging more when she ate. She is having problems with voice projection, forming her mouth and tongue properly and some soft palete and throat issues. They gave us exercises to work on but Dr. Norwood doesn’t want us to focus so much on therapy that we lose sight of the goal-saving Kennedy. While that won’t happen for us, sometimes therapists can become consumed by their issues and forget what we’re all working on. We also put in a referral to the Early Childhood Intervention at our local ESD in the Molalla River School District as they have the same services (and more) for free and they can come to our house. It will also help Kennedy when she does begin school to have an Individual Education Plan (IEP) in place.

Next issue, Kennedy’s weight loss. As many of you know, we tried appetite stimulants when Kennedy lost as much as 15% of her body weight only to have an increase in vomiting. After not eating because of mouth sores and digestive sores, she was started on TPN supplements before Labor Day weekend (I think I mentioned this in my last long post). Anyway, TPN is not a long term solution-1) because it requires constant access to her Port which it was not designed for and 2) her liver and kidney must process it instead of her digestive tract. Dr. Norwood thought it would be in her best interest to have an NG tube placed. For those who have heard the term but do not know what it is, it is a flexible, plastic tube which goes through her nose, down her throat to her stomach to get nourishment such as Pediasure or KinderCal for kids. Because Kennedy can be difficult (really? big shock, I know!) her doctor had them place a larger tube that was weighted to discourage her from removing it. First off, she had to be sedated in day treatment for a procedure that normally is done in the clinic or in a hospital room and can even be done by a home health nurse, then when she woke up she was hysterical screaming that she was ugly. Talk about ripping my heart out! And if that wasn’t enough, it wasn’t in far enough and when she got back to her room, the nurse had to put it in further. This hospital stay had started off bad anyway (this was her second dose of Methotrexate) when she climbed behind her bed to get a toy and deaccessed herself. Because there was no Heparin in her line, it had to be reaccessed without any EMLA cream to numb the site. It was very traumatic. Okay, back to the feeding tube issue. She gagged uncontrollably through out the day and was very upset about the whole thing. This was on a Thursday and we went home, after much instruction, on Friday to begin our new routine. I was not on board with the whole thing but told Dr. Norwood I would play it up and trust him for at least the next 2 weeks. We were home only a couple of hours and I had disconnected her from her food to give her meds, but when she changed her shirt in to her jammies, she accidently pulled some of it out. I told her not to touch it before I called Dr. Norwood but before I knew it (and because she realized it would not hurt) she pulled it the rest of the way out. It was a done deal then. The next day the home health nurse called and said she could come out and put it back in-I just laughed. Not to be mean but when I explained everything to her she agreed that it would not be a good idea. At her next appointment the following Tuesday, Dr. Olson said that we would not be trying it again and put Kennedy back on TPN. She wanted to see if this was really a long term issue that would require the insertion of a G-tube (that would require surgery) or if it would resolve on it’s own. She just wanted Kennedy to get to 42 lbs. before the TPN was discontinued.

Let’s see…the 3rd round of chemo. After breezing through the second round with few complications, we thought we were in for a piece of cake. Boy, we should know better than that. Kennedy started out with an allergy issue that caused a runny nose and just feeling cruddy. It is possible that if affected her body’s ability to process the Methotrexate through as it took much longer this time. According to protocol, she needs to have less than 0.4 in her urine to go home but she stayed there for several days and didn’t drop below 0.2 (which is where the doctors really want it) until after Friday night. Dr. Norwood said that when it hangs on like that it can cause complications. The only other child he had seen that metabolized it well one time and then not the other had a severe lung disease which she does not have. He was baffled and concerned and that only caused more stress for me. So Friday night we were supposed to go home but I had this terrible nagging feeling that something was not right with her-I just couldn’t put my finger on it. Dr. Norwood had released us to go home at 8:00 pm but the nurse, Heather, talked him out of it and at 9:00 pm, Kennedy spiked a fever. Well, that meant blood cultures and broad spectrum antibiotics and at least a 48 hour stay. We ended up staying until Tuesday and Kennedy required a platelet and red cell transfusion after vomiting blood and four bloody noses in 2 hours. If it’s not one thing, it’s another! Whew! So we went home with another week’s supply of TPN. The week went okay. She had some mouth sores and felt all around cruddy but we survived. The following Tuesday, last week on the 4th, Kennedy was to return for her last round of high dose Methotrexate. She had horrific bruises and I just knew there was no way she would pass her counts. I even called the doctor the night before and he reassured me that she would be fine and he would see us in the morning. Well, don’t say that mother’s don’t know their kids. As you all read, she did not pass her counts and even required ANOTHER platelet transfusion. What I failed to mention in that was that there was great concern that because of her failed counts and rapidly dropping counts (that should not have happened with Methotrexate) we were worried about a possible relapse. Her doctors said if she did not pass her counts yesterday, we would have to perform a bone marrow aspiration to check for return of leukemia cells. It was a very long week to say the least. A relapse now would mean our only option is a bone marrow transplant. A very scary place to be indeed. But, NO FEAR, as she passed with flying colors yesterday! Her platelets which needed to be 75 were over 200 and her ANC (measures her ability to fight infection) needed to be 750-or half of normal-and it was over 3000! What a relief!

So, here we are. We did bring the trailer this time so Austin and Keith could at least be here. That has helped ease many of Austin’s anxieties.

That is certainly enough for now.


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