Courage for Kennedy – Journal

December 30, 2005

Category: Treatment – Melenie – 12:45 am

I am sure I have caused some panic by not updating, but things have been busy and at the end of the day I am just too exhausted. I thought I had better get on it though as my cell phone has had way too many messages. First, I would like to say that Keith and I greatly appreciate all the messages, guestbook entries and e-mails of hope and encouragement for our baby girl. They definitely help to keep our spirits up. It’s always nice to know that there are people praying for us.

Tuesday night I finally hit the wall. All of the emotion and frustration of the last 7 months came flooding out. The bad news was that it was directed at the new doctor in the PICU that we needed to work with. Keith said that thankfully, none of the drs I was really upset with were there and being the incredibly smart and patient guy he is, he didn’t say a word. I was crying and venting about my frustration that no one had a plan beyond supportive care, I was mad that Kennedy did not appear to be getting better and that no one seemed to be on the same page about what was going to happen. The nurses thought I had valid points, and only because he wanted me to calm down, the dr suggested that we have a care conference. This is when everyone gets together (Kennedy’s team and us) to discuss what is really going on and what the plan is for her. I went off to do the most comforting thing I could…research. I read every study regarding 6tg and VOD and alternative treatment drugs that did not involve overdosing the liver. I was not going to be unprepared or uneducated when making decisions. I spent a considerable amount of the night on the phone with my friend, Tammy, and in prayer. Rather than spend all night venting at God about my overwhelming situation, I asked Him for his strength, wisdom and guidance in making the best decisions for Kennedy. I had finally come to a point of utter dependence upon Him. I knew I could not get through the next moment without His guidance and so I waited. He shared with me that I only needed to trust that He would give me the next step. After I lost my pregnancy between the kids, I read that when we step out in to the darkness, one of two things will happen; either we will have something solid to stand on or we will be taught to fly. Kennedy has absolute faith that God is in control of her cancer and her. She told me a few months ago that even dying is getting better. Her trust in God is so strong that she believes whatever outcome He gives her, it will be the very best thing for her. Every moment, He has given me the next step. Certainly not the whole path, nor does He show me where on the map I’ll be next week, but there is always solid ground where I stand.

Yesterday, we were finally able to start seeing, on Kennedy, signs of improvement. She answered a few questions coherently and opened her eyes. One of the therapy dogs came in, Pogo-a Papillion, and she worked very hard to raise her hand to him. This was one of the first deliberate acts we have seen all week. My aunt Sue also came by and she could tell that she was there and also was responding to both Grammie and Papa’s voice. Even when Kennedy appears to be sleeping, she often can be seen “blinking” her eyes and turning her head towards thoses voices that are familiar. She needed more platelets too and is now using a CPAP machine to help her breathe. For those of you with sleep apnea, it is very similar to the machine you use when sleeping. It forces oxygen in with pressure and helps to expand the lungs and fill the air sachs to keep them from collapsing. Kennedy’s lungs appear to be improving as the pressure from her organs is relieved. She even spent some time today just receiving oxygen and did very well. It helps her body to rest on top of assisting her in keeping fluid from filling her lungs. She is receiving TPN with a very small amount of lipids to maintain her nutrition. There was some concern about the lipids as they must be processed through her liver, so the amount is small and obviously her liver function is being very closely monitored.

Austin had spent Tuesday and Wednesday night with Aunt Tammy, Kylee and Cody and was having a blast. When my Auntie Sue came by yesterday, she also brought gifts left by “Santa” on her door step at Christmas for the kids. Today when Aunt Tammy brought him to her house, there was pleasant surprise waiting for him. Tonight he is sleeping at her house and tomorrow will be able to spend more time with my cousins and their new puppy. Of course, he loves their big dogs too, but how exciting is a puppy??? When I have talked to him, he has been having a blast. Thank you guys for helping him to have such a wonderful time. I do miss him terribly but feel that this distraction is very beneficial. Tomorrow my Auntie will bring him here and he will be spending the night with us. As if all that fun is not enough, Saturday him and Papa will be going to Albany to watch bull riding. What fun! The PICU is just not a fun place for him and while he loves his sister very, very much, he is showing signs of resentment about her being sick and taking them out on me. I’m glad that I have had some time to rest and will be looking forward to having him beat me at a few games of Clue tomorrow night.

Today went well. I want to make it very clear though that Kennedy is still in critical but stable condition. There appears to be a misconception that because she is beginning to do well that we are “out of the woods.” While her condition is no longer hour to hour, it is day to day and could change drastically at any time. Okay, enough about that, yesterday Kennedy was moved to the other side of the PICU. With her ANC being zero, having liver failure and still having bleeding problems, it was necessary to move her as far as they could from infectious diseases. In room 10, we were sandwiched between a child with E-coli and a child with Meningococcal. Not a good place for her to be! So, it took us three hours to get her completely moved to the otherside of the PICU with all of her Christmas presents, our junk and everything needed to take care of her. Oh, we also had to move her and her bed. We are settling in nicely.

Our care conference went well. Papa was also able to attend so we had more people on “our side” and that was helpful. My dad has been incredible. Keith and I go to bed in the early morning hours and he is able to be here around 6 am so she is not alone very long. He has been a big support during the day and was very helpful with Austin when he was here. Grammie holds down the fort and thankfully runs errands that are impossible for us to accomplish. I can’t imagine not having all of their help. Okay, back to the conference…I finally feel like we are all on the same page. Dr. Barclay (the liver specialist) feels that Kennedy is starting to improve. He reminded us of how well her numbers are and is hopeful that she will recover with no long term effects. He did remind us that VOD is very serious, and her case is considered severe, and was unwilling to project too far in to the future. He said that things could slide backwards but he did not feel they would. He did not know how long she would be receiving supportive care (basicially as long as she needs it) and said that we’ll have more answers as she comes off the meds that are working so hard. She was unable to take oral meds for about 24 hours and her ammonia levels did go up so clearly that time will not be coming too soon. Dr. Norwood (one of her oncologists) said that right now the concern is for her VOD and infection. Kennedy has NO IMMUNE system-not run down but literally no defenses against infection-so that is a huge worry and concern. When a person has an ANC of zero, if they get a cut on their hand that becomes infected there will be no signs of infection other than a fever. If you or I get a cut, it will become red, inflammed and may ooze pus and we know it is infected; not in her case. Cancer families live in constant fear of sepsis and now that is what we are continually trying to fend off with all the antibiotics. Kennedy was running a fever of unknown origin and they have taken blood cultures with no luck so if it continues a few more days, she will be given a anti-fungal and probably another antibiotic. They have no plans yet to treat her Leukemia or prevent a relapse. Her body is simply too weak to receive chemo and she did not receive her dose of Vincristine on Tuesday. They are consulting with other oncologists who have dealt with high-risk, slow-response kids suffering from rare but severe side effects and will watch and see as to how her treatment will go. Not a fun place to be that’s for sure. Should this problem continue for a few weeks, they will look in to options that are either “liver lite” or that bypass the liver all together. Dr. Norwood was very honest and said in his experience with severe VOD, all of the cases have been fatal. What Kennedy has going for her is that she has not had a transplant and all the complications that go with that. He also said that if we don’t heal her liver, there is no point in even discussing how to treat her leukemia. To sum it up, her treatment concerning Leukemia is in limbo for now. Dr. Christophenie (the intensivist that I hope I spelled her name correctly) just reiterated what we had been talking about and started discussing ways to give Kennedy quality of life. We talked with Child Life and other therapies to schedule times for them to play with and encourage Kennedy. We have to let her know that are things worth waking up for and worth getting better for. Dianne and Kristina came by today and Kennedy was pretty responsive to them. They have cut back on her Morphine and Versed and while she is upset at the prospect of being sick, she does not appear to be having pain. She is still on a Morphine drip, she just has a slightly reduced dose. She was awake for a while today but very clingy to mom. It is just heartbreaking for her to cry out for me to “uppy” her when it is not always possible. I did get to hold her a couple of times and lay with her in her bed but in her mind it just wasn’t enough. She was opening her eyes more and focusing in on particular items. She even made decisions about what she wanted and reached out for toys with Dianne. This was fantastic!!! The nurse and I also gave her a bath-which she wasn’t happy about-and I was able to spend more time rocking her in my lap. We are only speaking positive words in her room so that she will believe she is getting better and will have the desire to get moving as much as possible. I am asking that any conversations that could scare or sadden Kennedy be taken out in to the hallway and even if she appears to be sleeping, she can and does hear everything that goes on. Only healing, strong, happy thoughts for my princess.

I have written a novel and Keith said he did not want to go to bed at 3 am tonight so I leave you with this thought:
“The best bridge between despair and hope is a good night’s sleep.”

May tomorrow be filled with hope,

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