We are home again and because Kennedy is sleeping (thank God for Benadryl), I thought this would be a good time to update her site.

We did come home Saturday night but as you read, she went home without TPN or an NG tube and became dehydrated very quickly. Monday she was very lethargic and was only awake for a total of 2 hours, so back the clinic we went. Her liver counts were up again and she was very dehydrated so we received a bolus of fluid and went home. She was due back at day treatment on Tuesday morning so they felt okay about this decision. The insurance has been a huge pain and was the reason Kennedy went home with no nutrition despite not eating or drinking.

Tuesday she was still pretty out of it when we went to day treatment. We had to be there at 9am for blood draws and she was supposed to have physical therapy at 9:30, however she was so out of it that Amy did not think it would be helpful to try and work with her. Kennedy was scheduled to get a lumbar puncture (LP) with intrathecal (in her spinal fluid) Methotrexate, IV Methotrexate and Vincristine but when the nurse practitioner arrived to do her procedure she was very concerned about how unresponsive Kennedy was. There was some panic as she confirmed with the oncologists about what Kennedy was to receive. Kennedy’s liver counts were still high and not in the normal range and her white count was very high. Her white count is where her leukemia is so they were very concerned that she would relapse and even said that without treatment, a relapse would occur within the next week. They went ahead with the LP and intrathecal Methotrexate but held off on the rest of her chemo until they had consulted with other oncologists at hospitals such as Duke University, Children’s Hospital in Seattle, University of Minnesota, MD Anderson in Texas and Doernbecher. They continued to hydrate her in hopes that she would become more responsive. After several hours and many tears they told us that they had no choice but to give her chemo and hope for the best. At this point in the game if we give her chemo we take the risk that her recovering liver will not process it and shut down again and would be fatal, or that we do not give her chemo and her leukemia relapses and because she would not be able to withstand the extreme chemo/radiation necessary for remission/transplant it too would be fatal. All of our faith rested in the hope that Kennedy’s liver had recovered ENOUGH to process the chemotherapy and that we could give her enough chemo to stop a possible relapse. Needless to say, with Kennedy’s condition, they kept us overnight at least. It was all I could do to wait until the next morning for the blood work that would decide her fate. It was a very LONG night. Oh, not to minimize this but they also placed an NG tube onTuesday to insure that Kennedy would get nutrition and medication.

Wednesday blood tests came back very positive. Not only was her liver handling the chemo, but her white count had dropped significantly over night. What an answer to prayer! She still had more chemo to recieve and had her PEG injections later that day. She struggled with her NG tube but did so much better than last time she had one. We switched her food to Peptamen Jr from KinderCal because it is easier to absorb. It is $8 per can and when we received a 4 week supply, it was over $1300!!! And all of our formula feeding friends thought their babies’ food was expensive! At this point she is only tolerating about 1/2 of what she needs though. I personally think that it is psychological because she has no problem keeping it down when she’s asleep. We could not find a company that would allow up to have a pump though because of our insurance company. Now they have changed their story and decided not to cover anything that is under a “clinical study” despite the fact that all of her treatment is FDA approved and would not change whether she is on study or not. AALL0232 is a compariston study that is looking at which of two common steroids is better during induction therapy and whether or not it is better to give high dose Methotrexate or increasing dose Methotrexate during interim maintenance. All of this has been common practice in treating ALL for a long time. They said that her treatment does not need to change, just how it is labeled. The biggest problem with this is that through the study, they will be able to help other kids, especially those that could have the same serious complication that she did. Without this study, there will no need to keep permenant, accessible records regarding her treatment that could save the lives of other children. We are appealing their decision based on the fact that we were already on this study prior to enrollment and that all of her treatment is FDA approved. We are consulting with a national patient advocacy group and our own local insurance commission. The hospital is working to get us charity care for our ever accumulating debt and Providence Home Health is also working with us to pay for Kennedy’s nutrition needs.

After working all of this out and watching Kennedy’s numbers get better, we were able to take her home on Thursday. It has been interesting getting use to the pump but I think it’s getting better. Last night, Keith and I went to dinner at Chang’s then went and picked up a few things at Target. How nice to get out of my house and not be constantly needed. I really appreciated the rest. Then my mom and I went to Costco today and I got a frantic phone call from home. Keith was moving Kennedy and accidently pulled her NG tube out (only about 1 1/2 inches), I told him to tape it and I would be home soon. I checked her placement and it seemed to be fine so I left it alone. Kennedy could not just stop picking at the bandaide and pulled it out another 6-8 inches! I called Dr. Norwood and he said that because I could still hear air going in to the tube, that I should just push it back in and check again. I gave her Benadryl to calm her down but as I said when I started this journal-she’s out cold. I guess I’ll just leave it where it is for right now. For those of you who love talk radio (specifically conservative) I was on the Jeff Kropf show (Saturday and Sunday from 6am to 9am) on KXL (750AM) this morning. No, I did not tell anyone and the only reason my family got to hear was because I had to make the phone call from home. I really appreciate Jeff bringing Kennedy’s story to the attention of others. It helps to have so many people praying for our little girl. I will be doing periodic updates so check back for more info on that.

Please pray as Kennedy has a therapy evaluation this week because of her need for more intensive therapy. She is not hardly speaking, and when she does we can rarely understand her, she is very weak and can not bear weight. They will be determining if she needs very intensive outpatient or inpatient therapy.

Her and I will also be spending time with Russell from the Molalla Pioneer this Tuesday to talk about our journey so watch for that link soon!

Last year I was really struggling in my faith and I specifically remember asking God to show Himself in such a way that I could not possibly question His existence or His hand in my life. I had no idea then what I was really asking for but He has shown Himself to be the great I Am. Kennedy’s faith has carried us through so many times and I believe that she is closer to God than any of us could possibly fathom. I highly recommend a book called “Tuesdays with Morrie,” it was literally life changing for me and has helped me heal so much through this last month.

Continued prayer for Oliver and please pray for Gage who is having kidney problems due to chemo and Joshua who will be having surgery to correct damage done as a result of radiation therapy. Congratulations to Warren who has completed chemo and is doing awesome and to Rebekah who is heading towards her last chemo!

“It’s not the size of the dog in the fight, it’s the size of the fight in the dog.”
– Mark Twain

Thanking heaven that our Kennedy has a lot of fight and refuses to give in to statistics!

Kennedy: Gaelic “hard headed warrior”

And we worried that it was too strong of a name for a girl! 🙂

Love-Hope-Faith,
Melenie

Hi everyone!
I spoke with Melenie tonight and it’s been quite the ordeal. She is exhausted and Kennedy was needing her so she asked me to post an update for everyone. She thanks all of you for your prayers, well wishes and support. It means so much to them!

Kennedy’s liver counts, ANC, etc. are much better than yesterday, and Kennedy is getting some of the nutrition her body badly needs. HOORAY!!!!!! Apparently Kennedy is tolerating the chemo she received. They are at the hospital for another night and will assess everything again tomorrow. Dr. Norwood says they have won this battle but is still understandably cautious.

Keep the faith, Kennedy! Keep fighting the good fight!

We love you!

Becky

Yes, it is true that we went home but as usual there is a snag. Because our insurance refuses to provide any care for Kennedy, we are unable to get any home health care. This means we went home with no TPN (nutrition/pump) for Kennedy and she is not eating or drinking. Between Sunday morning and Monday, she became dehydrated and was sleeping almost continuously. I took her to the clinic and they were able to give her fluids through her port. They also ran some blood work and found that her liver numbers were recovering but her white count was very high for a leukemia patient (over 11,000 and her ANC was 10,400-during treatment they like an ANC of 500-1500).

We were able to go home and spend another night in our bed but we needed to report to day treatment by 9am. Again, her liver counts were good this morning but her white count continues to rise. Please remember that her white count is where her cancer is and while they did not find any suspicious cells, an impending relapse appears to be inevitable. Her liver counts are good but still weak and could change at any time so there was some concern about giving her chemo; on the other hand, she would relapse without treatment and it was critical to give her chemo. There was some panic and confusion because Kennedy is so lethargic so they went ahead with the LP and intrathecal Methotrexate but held for a few hours on the other.

Kennedy also received an NG tube as we can give boluses of nutrition rather than rely on a pump, of course, her stomach is not handling that well. After consulting with several other oncologists, they decided that they must give Kennedy her full dose of IV Methotrexate and 1/2 dose of Vincristine. They are fully aware that her liver could decide to shut down again but at this point liver failure and relapse are equally horrible and most likely fatal. They would not expect her to recover from either one.

So where is our hope??? We are praying that her liver will process the doses with minimal complications despite having been non-functioning 2 weeks ago. Yes, that is it. They have us here at least overnight to ensure good hydration and hope that she will tolerate her nutrition (they are currently only pushing about 1 tsp./hour) and to give her supportive meds.

As of this writing, she has not tolerated the nut. or med. well and she seems to be uncomfortable. They are measuring her tummy and Dr. Norwood is insisting that the residents do not treat her but that the nursing staff contact him at home. We got our Christmas miracle, I just hope God is not running short tonight.

Mel

WE ARE HOME!!!

It’s true-we were able to come home after her last dose of Defibritide at midnight Saturday night! We arrived home exhausted at 2:30am Sunday. It was so worth it to wake up in our own beds that morning. Before we left the hospital we had several visitors. Saturday morning, Princess Sara with Make a Wish came by to see how Kennedy was doing. It did not go well. Kennedy screamed almost the entire hour that she was there. We tried talking about Disneyland and her upcoming trip but she just continued to bury her head and cry. A picture with the princess was totally out of the question at that point. I felt so bad for Sara and Wendy of Make a Wish. Kennedy was just not going to lighten up at all. She was pretty tired though and was out within minutes of them leaving. Later that evening, Roxanne from Arthur Academy came bearing delicious food! Thank you so much. Then Kim was back with Darren, Skyler and Austin with more food and goodies. Home cooked food is such a blessing when you have to be stuck at the hospital-you just can’t appreciate how good it tastes until you’ve eaten hospital and fast food forever. I want to also thank our wonderful nurses and therapists-we could never do this without them. They truly spoiled us this week with a Christmas tree, gifts, cookies, etc. The nurses and staff at Emanuel are absolutely the best!

I packed up the trailer and cleaned it on Saturday and Keith went to play poker. He needed the break and it gave time for me to visit and get the room packed up to go. He was out in the first few rounds so he made it back early. He loaded up the van and the car and we waited…and waited…and waited. Keith suggested we just crash in the trailer but I really wanted to go home.

Sunday morning was wonderful. Kennedy had her Christmas morning and enjoyed all of her goodies. Later that day, Uncle Jeff, Auntie Caryn and Emily (Amber had stayed the night with Grandma) came over to celebrate Christmas Eve. We ate and visited and the kids played. They all had a blast opening presents and the girls were excited to play with all their goodies. Austin is set on books to read-he received all of the “Series of Unfortunate Events” books and the Narnia series.

This morning could have started off better. Kennedy was throwing up and our insurance company called at 8am to tell me that because she is on a clinical trial for chemo, they will not pay anything cancer related or side effect/complication related…EVER. Needless to say, I was reduced to tears and tried not to kill the messenger through the phone. I must have gotten to her because when I got back from taking Austin to school, there was a message on my phone stating that should we pull Kennedy off the study-even if her treatment stays the same-they will begin paying for her treatment from the date of the letter. I am in touch with the oncologists office as we speak to see what we can do. We will still be acquiring tremendous debt but not in the million dollar range. Kennedy desperately needs TPN right now but because of this mess we can not get it. It cost about $10,000/week and that is the max of her home health care benefits. Ugh! It just never ends. This could put us back inpatient just to be able to provide her with nutrition. I hate, hate, hate the system!!!! Please understand, I am not pro-universal health care but I would like to see the government make private insurance companies do their job without causing so much debt and anxiety to families. I mean, what are we paying all this money for anyway??? By not adequately providing benefits to their customers, they are costing EVERYONE more money-not just us. Please keep this ongoing struggle in your prayers. I need strength, patience and wisdom in dealing with this.

Kennedy is very tired today and has been sleeping until the last 10 minutes. She has pt tomorrow and an LP with intrathecal Methotrexate. They are easing her back in to chemo and watching her very closely because her liver still has not fully recovered. She is considered in stable condition.

We continue to hold on to hope and cling to Jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
He has a plan for Kennedy!!

Please pray for little Oliver Trasen. After receiving a related bone marrow transplant in September to treat his AML, his leukemia has returned. He is only a year old and his family is really heartbroken over this.

Love-Hope-Faith,
Mel

Now that Kennedy is awake, that has it’s own host of issues! Rather than make excuses about why I haven’t updated her site, please be aware that it is 4 am on a Saturday morning and I am in the resource center rather than sleeping.

I’m going to go back to New Year’s Eve and catch everything up so that you are all back in the loop…when kids start waking up and screaming in the PICU, it is time to move them! Kennedy managed to stay off the ventilator and because she was in serious but stable condition, they thought we would all benefit from moving back to the schoolage unit. Dr. Norwood, bless him, knew that I would not be happy if we were stuck back in 3530, so he generously moved us to 3526. Oh, how nice to have a shower!! Okay, I was still taking showers, we just didn’t have a shower in our room. Kennedy was moved with a HUGE amount of nursing orders and she still required close monitoring, oxygen and respiratory therapy every 4 hours but we were home (our 2nd home at least). It was quite a production to move her and all of her things. She still had fluid in her right lung and needed her “air” bed but was improving. We were worried about how she would do, in my opinion she still needed more nursing care but I wasn’t going to complain, and it was understood that should she back slide at all, we were to return to the PICU. I slept with her that night just to ensure she wouldn’t have too many problems and to ease my own anxiety.

New Year’s Day-Kennedy continued to do well despite having a bad night of little sleep and vomiting. She was still on the Morphine drip but we were trying to decrease the dosage. Needless to say, mom did not get much sleep for sure. Her ammonia levels and liver enzyme levels hadincreased slightly so her med that attaches to the ammonia was increased. Now, Kennedy has NEVER been great with taking oral meds-even before she was diagnosed with cancer-and to ask her to take 40ml, 3x per day seems very excessive to her. This became a battle for all of us and she either flat out refused to take it (spitting it all over us) or would vomit it up 15-20 minutes after we finished getting it in her. How frustrating!!!! Oh, she is her mother’s daughter! When she was born, we worried about giving her such a strong name-and while she needed it-she can be so difficult! Aunt Amy and Alan were here for the weekend. On Saturday, Austin and mom ran home to get some work done that included paying bills-Yippee-so we missed seeing them. Sunday we were there and really enjoyed visiting. Amazingly, Kennedy really liked Alan and enjoyed playing with him-ok, she threw her kitties at him but she was laughing. They took some really great pictures of the kids and I hope to have them up on the website soon. Sunday night she did better. Oh, I forgot to mention that on Saturday, Kennedy accidentally pulled out her IV in her foot and bled like a faucet. This caused mom to have a little “freak out” at the realization that a new one had to go in ASAP. I demanded that Dr. Norwood get on the phone but he thought it would be a great learning experience for the resident to actually deal with me-we haven’t seen her since. I’m really not that bad but when it comes to my babies, I am as protective as a mother bear. I had had it with the whole “poke her forever just to get one line” and told them they only had two shots at it, could not use her badly bruised arms, her abdomen or head regardless of how good the veins looked. They managed to get one in on the first try. When Dr. N came by Sunday, we scheduled her PICC line in for Tuesday. I was absolutely at the end of my rope. I’m sure poor Keith thinks his wife is turning into Godzilla! Okay, Sunday. Kennedy’s liver function has essentially stabilized and plateaued. They do not expect her to get worse, but there is no time line for her liver fully recovering.

Monday, Keith returned to work and I had Austin for one more day. Kennedy is awake more and getting all kinds of therapy (occupational, physical, speech, music, art, etc.) so things are very busy around here. She is very clingy and anxious after all that has happened. We are having to build trust relationships all over again. She cries if I am just out of her sight! This is emotionally exhausting for all of us. We were still having medicine issues and this is now her chosen battlefield. This and food-her two favorites! She continues to be on TPN, but her drs. want to see her eat to truly assess her liver function. Also, TPN must be processed by her liver. There was some talk about an NG tube to get meds in and for food but we haven’t heard anything more in the last couple of days. Because her ammonia levels were not decreasing, they doubled one of her meds to 20ml every 8 hours. She was so delighted-she just had more to throw up. She was very happy to see daddy when he got off work-she had gotten so used to him and papa being there everyday that she really noticed when they were gone.

Tuesday, Kennedy’s friends Rebekah and Gage were admitted for chemo. Rebekah’s family brought us food and even made us cookies! Thank you, thak you, thank you-another family who spends so much time up here and living out of their trailer can truly understand what the gift of home cooked food means! Kennedy was delighted to see Rebekah and they spent some time playing. Gage and his family had just returned from Boston so it was fabulous to see them again. More physical therapy and a wheelchair on Tuesday. Kennedy can at least sit unsupported for up to 3o minutes but is unable to even stand. She was less than interested in the chair until her brother saw it after school and showed her just how cool it really was. It helps that Amy, her PT, found a pink one! Tuesday was the day that Kennedy realized she had slept through Christmas day. When Austin went to school, she knew break was over and she had not had Christmas. She was pretty ticked off about it but I reassured her that Christmas did not have to happen on a certain day and no one would unwrap her presents or take down the Christmas tree until we had truly celebrated. This helped calm her and gave her something to work towards. Dr. Barclay and Dr. Riley, liver drs., came by and asked a lot of questions about Kennedy’s state of mind because her ammonia levels do not seem to be decreasing. I tried to explain that with the increased amount of meds it was becoming more difficult to administer them but they had no interest in changing that. Aunt Tammy picked Austin up from school and he had a lot of fun hanging out at their house and eating spaghetti for dinner. Cheryl came by to visit, so Keith picked him up from Kylee and Cody’s. We had a great visit. I forgot to mention that Kennedy is also struggling with her speech. It is frustrating for us because we can not understand her clearly and she gets mad and gives up trying to talk. She has to make a concious effort to make her lips, throat and tongue work together and take a deep breath to project her voice. Sometimes she seems to do very well and at other times, it is just not worth all the effort. Lisa, her speech therapist, made her a board with pictures and she does know signs but her desire to speak and be understood at this time is more important than just getting her message across. Just keep bring on that crap buffet!! It will improve and everyone on her care team really believes that getting her home is the best therapy of all. So, she had visitors and seemed to tolerate that well. Before Aunt Tammy picked up Austin, they came by with yummy food and Kylee had a Strawberry Shortcake poster for Kennedy and a red rose for me. She has so much love and compassion for others-what a gift. We had a nice visit with them and even Auntie Caryn and the girls were here. Amber did great and Kennedy just lit up at the sight of Emily. Amber even got in my lap with Kennedy and gave her lots of love. Overall, it was a very busy day and I was happy to hit that pillow.

Wednesday, more therapy. Dr. Barclay declard Kennedy “out of the woods” and feels that it is very unlikely she could slip back now. Kennedy did much better and was only requiring oxygen at night. Daily chest x-rays were still the norm and she continued the Bi-Pap every 4 hours. This made it very hard to sleep. I forgot to mention that on Tuesday Kennedy was supposed to get her PICC line in and an LP with intrathecal Methotrexate. Her counts were too low for any chemo and there was some confusion about the PICC line. While it is possible that she would only need another line until Saturday, it is equally possible that she would need it for future chemo. Because we are not ready to make the decision about adding another central line, this gives us a way to give her meds without adding IVs and 6 months to see what her chemo will look like. So, wednesday, that was done and despite the large amounts of “sleepy milk” as Kennedy calls it, she woke up before we wanted her to. She became upset but quickly calmed down when she realized why we were holding her down and her arm still. We had to hold her this way until x-ray was done and we had the results. I was very pleased with how she reacted. Dr. Olson believes that we can slowly introduce chemo drugs and wait and see what happens. I plan to send Kennedy’s file to several docs at top universities and medical facilities just for opinions before we proceed too quickly. I just want to know that we are doing the very best thing for Kennedy.

Thursday and Friday were of course more therapy. Kennedy can be cooperative but does not always choose to be. She did ride her bike in PT on Wednesday but screamed for all but 10 minutes on Thursday and was some what willing to participate on Friday. She wanted nothing to do with ST at all on Friday and pretty much refused to help. She has started eating small amounts of food so we plan to go home with TPN. She has also begun taking Marinol again. When a person doesn’t eat for long periods of time, their body stops telling them they are hungry and they just continue not eating. Marinol will tell Kennedy that she is hungry and once she begins really eating, her body will get back to “normal.” Grammie and I took her to the cafeteria for dinner and she actually had some spaghetti. It’s nice to just see her being willing to eat something. Dr. Olson told her that her two jobs were to take her meds and eat food. They did talk on Friday that she would try to find better tasting, smaller amounts or just different meds for Kennedy-we’ll see what she comes up with. They are also planning to send us home on Saturday! Woo Hoo!!! Kennedy still requires supportive care for her liver but is no longer requiring Morphine to manage pain or oxygen. In fact, on Thursday, they reduced her Bi-Pap to 2x a day rather than every 4 hours. She will not be walking or standing so that requires more work and she doesn’t talk much but that will all improve with time. Austin stayed the night at Skyler’s house and Kim stayed the night with us. In fact, she and Kennedy are snuggled up and snoozing right now. This allowed me to catch a few zzz’s with Keith in the trailer. Oh, I can’t wait to sleep in my bed again! Also, our Arthur Academy family has been wonderful. They are providing meals for us, providing lunch for Austin (and not just whatever the hot lunch is but stuff he actually likes!) and they are planning a fundraiser at Papa’s Pizza for our family. I will have more details regarding that soon. The Moose Lodge is also working on another fundraiser, perhaps a casino night with movies and popcorn for the kids. There will be another poker tournament in the spring and were working on a golf tournament, too. A quick word of thanks to everyone who has donated through PayPal and to Oregon Catholic Press for their donation of $3000 to Kennedy’s medical fund! We have been so moved by everyone. Thanks to State Representative Jeff Kropf, my former boss and friend, for allowing me to share Kennedy’s story during the Lars Larson show on December 30th’s First Amendment Friday. That really helps to get the word out and I’m thankful for the help and concern that has poured in as a result. I’m sure I’m leaving out things that have happened this last week and people who have visited or helped but know that we appreciate everything that you do-all the prayers, visits, phone calls, e-mails, food, help with Austin, prayers (can’t get enough of those!) and just loving and caring for us during this time. God has angels working right here on earth.

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Margaret Mead (1901 – 1978)

“Life is a long lesson in humility.”
James M. Barrie (1860 – 1937)

Many thanks this morning to the “small group of thoughtful, committed citizens,”

Melenie

I apologize now for the short journal entry but I have had several nights of no sleep and am very tired. We appreciate all the wonderful e-mails, guestbook entries and prayers for our girl during this difficult time. Kennedy is no longer in the PICU. I’m sorry we did not post sooner-she was able to leave and go the schoolage unit on Saturday with many, many orders and only on the condition that her respiratory function improve. She still is receiving the Bi-Pap every 4 hours but can go long periods without her oxygen mask. We are turning the corner for sure. They are placing a PICC line tomorrow because after 5 failed IVs, and more than 30 attempts, I put my foot down and demanded a better means of giving her meds. She is too unstable for heavy sedation/surgery, so this will be performed Tuesday in Day Treatment. Because everyone knows so little about the Defibritide, it must not be combined with other meds or TPN. She is doing much better and appears to be on the mend. She has also been upgraded to Serious but Stable condition. I will write more tomorrow.

Here is to a full 6 hour stretch of sleep-may it be mine!

Mel

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.”
–Anonymous

May tomorrow be filled with hope,
Mel

This will probably be rather short but I plan to update more in the morning. Kennedy’s prognosis is really good and they expect her to make a slow but complete recovery. They also plan to do everything in their power to prevent this from happening again.

Kennedy received a special “air” mattress today that has a continuous flow of air circulating underneath her. This is to prevent any breakdowns in her skin from pressure points. She is already showing signs of redness around her bottom and on the back of her head. It takes up more space but she looks much better.

She had another ultrasound today and it revealed that there is little fluid left in her abdomen around her organs. Her liver, spleen and kidneys were slightly enlarged probably due to the stress of her VOD. This does mean that they do not plan to drain off any more fluid or insert a chest tube they are however, increasing her diuretics to help her void out the fluid in her stomach and intestines.

She is also receiving TPN, a nutritional supplement that goes through her central line. They have modified it so that her liver will not be strained in metabolizing it.

She has a new “mask” for breathing. This gives her a break and allows her to sleep better because they will not be interupting her every 2 hours. It assists her in breathing but is not as invasive as incubating her. Just another tool to keep her off the respirator.

There is some concern about her soft palate/throat function as she was vomiting fluid (from her full stomach) through her nose. That does happen to everyone but she was already having problems when speaking with this closure and now it is more of a worry that she will aspirate fluid/vomit in to her lungs.

She received platelets today but did not need plasma or red cells-much improvement over the last few days for sure!

We signed the paperwork today that needs to be sent to the FDA for Kennedy’s new med. Dr. Olson has 5 days to get all the paperwork submitted. There was some pretty scary info on their regarding severe VOD so I was thankful we were not given it on Saturday. However, we know that this is Kennedy’s best chance at beating the odds.

She will have many changes in her chemo and I will actually give more infomation about that tomorrow.

Holding on to hope and faith,
Mel

Thank heaven for Austin…if it hadn’t been for him, it would have been very hard to believe it was Christmas. Keith and I slept for a few hours in the trailer-I got up around 5:30am to come back up and be with Kennedy. It was wonderful to sleep with my husband without any kids-I can’t remember when the last time was. Kennedy seemed to do well through the night. Her counts are all coming back good and today she only needed one unit of platelets. Her liver enzymes and ammonia levels are continuing to decline and everything indicates that her liver is wanting to function. It still has a lot of healing to do but it is certainly moving in the right direction. They are still saying she is in critical condition, but she appears to be getting better everyday. The drs and respiratory therapists (now only referred to as RTs) are still monitoring her breathing very closely and have increased her oxygen. They are concerned that her lungs are getting “tired of working so hard” and they are looking at possible options to help her including inserting a chest tube to keep the fluid/pressure off. At this point, it can’t be anymore of a risk than poking her several times to drain it off. After 5 pokes tonight, they were only able to take off about 600cc or about 1/2 a liter. In the grand scheme of things, not much. Her ANC/WBC is still in the hole so they are adding one more drug (GCSF) to increase her counts. They would like to see her ANC over 1000. They usually don’t give GCSF to Leukemia patients (after all, it is in the WBC that they have problems) but the benefits outweigh the risks in this case. They are giving it through her IV rather than as injections so it is important she stay in the ICU to have her blood pressure monitored. We have also learned how long she will be taking the experimental drug-about 2 weeks. They did increase her dose today also.

So, her VOD is improving as is her DIC. They are actually more concerned at this point about how they will go about treating her Leukemia. Because Kennedy is both a high-risk and slow-responding case, it is vital they continue some kind of intensive for the next 4 months before she moves on to maintenance. The problem, is that there are drugs she will not be able to take after having VOD. Relapse may be one of our biggest fears, because should she relapse during her intensive, she may need a bone marrow or stem cell transplant. And she has already had VOD so the likelihood that she would get it again is good but they do not believe another round of it would have a positive outcome. She will still get her dose of Vincristine on Tuesday but after that everything is up in the air. Just something new to worry about!

Austin had a good Christmas and Santa even left him an additional 7 presents up here. Boy, he was sure excited to get up here and see what his treasure was. My mom said that he left a note for Santa reminding him that Kennedy was in the PICU and not to forget her. He definitely didn’t and even left goodies for mom and dad. That was very nice and much appreciated. He had a very difficult time leaving tonight and was very upset that he couldn’t spend more time with me. I promised him that we would work out a way for him to stay tomorrow night with us in the trailer and that very soon he would get to stay every night. That did little to comfort him at the time. It is just very different than being in our usual room (it always seems that we get 3530!) because he can’t be loud or really play. If there was an emergency with Kennedy, the nurses and doctors would not appreciate stepping on Legos! It is definitely more boring for him and everyone is so tired and stressed out that they are not in the mood for entertaining. I told him that things would improve soon but that is so hard to see right now. Tomorrow, Keith is taking him to the movies so that will be a nice change of pace for both of them.

Ok, I know it’s short. I want to thank everyone for your encouraging messages-they really help and of course for the great food! It is my night to sleep all night (and daddy’s night to get 3 hours and then be with Kennedy) so I am headed to the trailer for SLEEP.

Love you all so much,

Mel

Why does there always have to be good and bad? We sure could use all good right about now! The best news of the day is that Kennedy’s medicine is here! We were starting to get worried but it showed up around 5pm tonight. The drs had thought she might not need it after her great showing yesterday but she has had a couple of setbacks. Not too serious but serious enough that it reaffirms the importance of taking the experimental meds. Her liver function had been improving but has taken a little backslide. Her ammonia counts were again rising and her clotting elements were falling. The staff is staying right on top of it and working to bring them back down, or up as the case may be. The hope is that this new medicine will release the pressure on the liver and allow it to work. As you can imagine, this is a long and slow process. She is no longer running a fever and when they drained her abdomen today, they removed less than before. We also learned that her white blood count is zero; this of course means that her ANC is also zero. We now have to be VERY careful about visitors and continuously wash our hands to prevent infection. An ANC of zero means absolutely NO immune system. Ideally she should be over 1500 and this is the first time she has been lower than 20. Pretty scary. Overall, things are progressing-just very, very slowly. There was more talk today of putting Kennedy on a respirator. She is doing well as far as keeping her CO2 down today, but the respiratory therapists are concerned that her lungs are getting tired and may need rest. Oh, when will it ever end? We just cling to the good news and wade through the crappy.

On a good note, I was able to go home for a while today and take a shower, in my own shower!, wrap Christmas presents and get the trailer ready to bring up. The trailer is here so that will make things a lot easier for all of us. It will also be nice to take some of our food to the trailer (Thank you, thank you to everyone who has come bearing food-I would also like to add, that those who have brought food have gotten to see our Miss Sassy Pants!). My mom and Caryn were able to stay with Kennedy today and I really appreciated the time I could have at home with Austin. Speaking of Austin, please pray for him as this has been very difficult for him; not just because of his sister’s condition, but because he has to be away from us for long periods of time.

Bill and Lynn Toops came by today. We had a great time laughing, mostly at Bill :), and visiting. They blessed us with a whole array of food that included a variety of sandwich fixins, chips, pop, string cheese, V-8, potato salad and treats for all. They also sent along the necessary paper/plastic items needed. Thank you so much-all of this blessing has made it feel like Christmas again.

Mom and Caryn decorated Kenn’s room for Christmas and one of her rt’s is bringing her a little light up tree tomorrow. There really is a Santa Claus. Speaking of, he should be here soon so I better get some rest.

Merry Christmas to all, and to all a good night.

Mel