Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourseles, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others. ~Marianne Williamson

Wednesday, December 10, 2008

The Ghost of Christmas Past

I apologize for all the depressing entries lately. I hope for the newbies that they have had a chance to go back and read some of the old ones to know this is not how I always am. Christmas has become a struggle for me because of 2005, but also the continuing financial strain. I will be doing a short series starting today...with Christmas 2005. Now, I don't normally post about Kennedy's cancer journey here but this will begin to explain a lot. I will look at this Christmas, Christmas today and what I hope for future Christmases.

It all started with the family Christmas party...and the few days following...

Kennedy is in the pediatric ICU (December 22nd)

Ok, so I haven’t gotten better at updating but that is my New Year’s Resolution! I just knew I had to post now as Kennedy is in critical condition. Two weeks of Ara-C finally did it and last Thursday she needed a platelet transfusion (her platelets were 7 and normal is 140-440). Normally not a big deal and expected with Ara-C but not the highlight of our day. Friday she needed red cells so we spent a very long day in Day Treatment but again, it was expected. Kennedy’s ANC was at 1470 on Thursday and she was rather chipper, so we went to the family Christmas party at Caryn’s for some yuletide cheer. That is when we first became aware that there was a problem. Kennedy was running a fever (again, another common side effect of Ara-C) but it was 102 and she had a bloody nose that just wouldn’t stop. We called Dr. Norwood and he sent us to the ER not thinking we would actually have to stay. However, her ANC was now 670 and her platelets were less than 5. We didn’t know how much exactly because when they are so low (below 5) they can’t even see them without a very high power microscope which is not used for a general CBC. We were admitted, got platelets and antibiotics and moved forward. Sunday, she got more blood and her platelets were 38. Monday she was still chipper but also still running a fever. Her ANC was coming up, her red count was steady but her platelets were again less than 5. More platelets and antibiotics but plans to go home Tuesday morning. Next morning her ANC was over 1000 and her platlets were…you guessed it, less than 5. WHAT?????? More platelets, chemo (including PEG which only made it worse) and antibiotics and we were on our way home. Later that night both Keith and I knew something was terribly wrong. Kennedy was vomiting stomach fluid everytime she drank water. She had vomitted in the hospital so we didn’t think too much about it. At 10am she vomitted blood (old blood with what appeared to be clots but may have been tissue) but was not running a fever. I called the clinic and Sam (Kenn’s favorite clinic nurse) said that she would fit her in. We were not expected to return until Friday morning. We got here and guess what? Yes, her platelets were less than 5 and she had more bruises and petichiae (more everyday really). On top of it, her torso (both stomach and back) were really hurting her. They knew she was vomitting blood, was clearly bleeding and having severe pain. They ran all kinds of tests hoping something would at least rear it’s ugly head. (Oh, I forgot to mention that she had blood cultures done-looking for bacteria-in the hospital but nothing ever showed up) Several tests came back inconclusive because of the Heparin in her line so they had to access a vein. They poked several times with no luck (her veins were too little and damaged) so in Day Treatment, they had no choice but to access her through her head. You heard me right, the top of her head!! Dr. Olson and Dr. Norwood both showed up and weren’t agreeing on what it was or what to do. We were admitted to the peds floor for plasma and vitamin K. Plasma is RARELY given to patients and only because Kennedy had absolutely no ability to clot. If she had fallen, she could have literally bled to death in a very short time. Oh, and by this time Kennedy had begun to swell. Within a couple of hours, her deep inney belly button was flat and brusing. She received her plasma and morphine and within an hour and a half, her abdomen had grown by 4 cm. The resident was called and she was admitted to the PICU. There one of our favorite Drs. showed and went over all the possiblities from stomach bleeding to major organs uncontrollably bleeding in to her stomach. The options for treatment ranged from stopping the bleeding and healing to surgery and a respirator. She had more testing (requiring more sticks) and had she not been profusely bleeding they would have added a Hickman catheter. They had to find veins for at least 2 more IVs and immediately. It took about 12 additional pokes and nearly sedating her completely to get 3 more. They basically have to flood her body with clotting factors to stop the bleeding. This means pressure on her lungs and a respirator. The only way to do this was to have more access internally. They sent her for a CAT scan which revealed lots of fluid in her stomach and fluid beginning to pool in her lungs that is collapsing the air sachs. They do not know where the bleeding is or what is causing the fluid but Kennedy is not urinating so there is concern regarding liver and kidney function. That is all I know at this time but they have listed her in critical condition and I will post new info as soon as I possibly can. In the mean while, please PRAY and sending healing thoughts her way, spread the word by forwarding her website info to everyone and anyone and post words of encouragement to her guestbook. Right now I have 445 new e-mails so I may not be checking those but I WILL check the guestbook.

We love you all!

HOPE and FAITH-never lose them,

Mel

UPDATE:Kennedy is in liver failure probably brought on by her chemotherapy. They have not yet started a course of treatment but will in the next few hours. The next few days will be critical in knowing whether this can be reversed or is permanant and requiring a transplant; it will all be dependent upon how much damage has occured and how she responds to treatment. Liver failure brings a whole host of complications and has already begun to affect her stomach and lungs. PLEASE PRAY FOR KENNEDY’S RECOVERY!

December 23rd

Okay, it amazes me how things can change so quickly. We just never seem to know what is going on until it is in our faces.

Her liver failure now has a name, Veno-Occlusive Disease (VOD), and to add to the confusion, she also is suffering from Disemminated Intravascular Coagulopathy (DIC). What does this mean? Well, let’s start with the easier one to describe: DIC occurs when your body becomes confused, either by infection or in Kennedy’s case medication, and devours/stops making blood clotting neccesities (platelets, plasma, using vitamin K, etc.) and this is caused by the VOD. Kennedy has no ability to produce her own clotting factors and her liver is using up all the product we are putting in. So what is VOD? According to the information we received and what we can understand from the doctors, it is when there is damage to the blood vessels (which can be caused by chemotherapy) and specifically in the case of VOD, when the damage occurs “to the cells that line the walls of small veins in the liver” and blood clots form “causing swelling of the walls and vein blockage.” Essentially, the veins became damaged, causing her body to send clotting agents to the liver and keeping them from going anywhere else, her liver becomes full of blood clots and no longer processes the chemicals in the body, such as enzymes and ammonia, and backing up the liver. Her blood is no longer able to clear itself of toxins and fluid because it can not access the liver, and this blood and fluids are backing up all over her body causing swelling. Untreated, VOD eventually causes major organ failure and death. So, how are we treating this? Very carefully. Because of Kennedy’s inability to clot blood through out her body (everything is being sent to the liver that we give her and nothing new is being made) we can not just “thin her blood with Heparin” and move on. This overloading of clots has caused full liver failure and thinning them is only part of the solution. Right now, we are flooding her body with blood products to compensate (4 units of platelets, 3 units of plasma, and 2 units of packed red cells in the last 24 hours) and using meds to clear the fluid and ammonia from her system. However, they only do so much. Kennedy’s organs are under tremendous stress and pressure from the build up of fluid so it was necessary to drain off as much fluid as we could to make room and hopefully force the fluid in her chest cavity (lungs and the area between her lungs and ribcage) to move down. This afternoon they drained off 1 liter of fluid and blood from her abdomen with a catheter. Of course, because of the condition of her liver, it will return and need to be drained again everyday or every other day as needed. The good news is Kennedy is not on a respirator at this time although her chances are greater than 50% that she will eventually need to be. She is getting respiratory therapy every two hours and oxygen and we want her to breathe on her own as long as she can without causing too much stress on her heart and lungs. They are literally treating her for the moment and making decisions about her care hourly. Kennedy is considered in critical but stable condition. How can we recover her liver? Kennedy will take a very experimental drug called Defibrotide which is currently manufactured in Italy. This is her best and maybe only chance at recovery. Because it is not currently approved for use in the US, it makes it a little more difficult to come by and now it is a matter of contacting the right people and jumping through the right hoops. Defibrotide will attack and break up only the clots in her liver causing the back up to be stopped and will hopefully allow her liver to begin processing blood products and recover. That is the plan and they have had very good results when it has been used. So the drugs we are giving her now for the VOD are only trying to do what her liver is unable to as we wait for the new drug that can hopefully give her liver the opportunity to function again. She is also beginning to turn “yellow” as billirubin builds up in her system. The conclusion is that she is getting supportive care (treating the symptoms) and soon they will hopefully be curing the problem. They continue to remind us that VOD can be fatal and that while many kids do well-Kennedy is Kennedy.

Some things we did find out. They only see VOD at Emanuel about one case every two years and Dr. Olson can’t remember the last time she saw it occur in a patient that did not have a bone marrow transplant. In her research today, she only found one patient who had DIC and liver problems, but it did not develop in to VOD. This makes our girl one in a million for sure. COG (Children’s Oncology Group), the organization that oversees Kennedy’s and many other oncology research protocols, and it’s doctors all over the US and Canada are reviewing her case and giving input in to how they think it could be treated or prevented. I reminded Dr. Olson that Kennedy has never done anything by the book since she was diagnosed and why should this be any different? We still don’t know how this will affect her chemo-she is working with COG and specifically the head of Kennedy’s particular research (AALL0232-arm DH) to make those decisions because there are drugs she will no longer be able to use. Scary for both her current condition and for treating her leukemia (please remember that Kennedy is high risk for relapse and was a slow responder to chemo).

They are also testing Kennedy for a genetic disorder that causes muscle weakness-after all, let’s just add fuel to the fire, huh?

On top of this wonderful crap sandwich-Kennedy still does NOT have medical coverage for her cancer treatment. She really is our million dollar baby!!! And worth every penny, I might add! Oh, and did I mention it was Christmas??? Merry, merry Christmas!

How long will we be here? Very good question-no one can really tell us for sure. Best case scenario, Kennedy can be transferred to the “peds floor” Sunday (although waiting on the new drug makes this very unlikely) and we will spend a few weeks there. Happy Christmas in the Penthouse suite at Hotel Emanuel. They also reminded us that she will get worse before she gets better. Well now, that is encouraging. You mean it can get worse????

How are we holding up? Again, a very thoughtful question. We get through each moment and each moment only.

How can you help? Please send food-really! We have had our fill of hospital food over the last 7 months and would gladly eat your leftovers. No, not the ones the dog won’t eat-you know those which you can’t be sure when you had them or what they are but if you think about it, and truly want to bless us, please send any extras you have. It costs a fortune to eat here and it’s only good the first few times through the menu (it does repeat remember)-after all, people rarely eat here more than a few days. I mean the grill specials are the same every week we’ve been here (7 months, remember????). Home cooked is best since take out has also been exhausted (pizza and burgers). I’m not picky! Not as bad as Keith and the kids at least. So, prayers and food. Lots of hope and faith also, and food. I actually dream about tomato soup and cheese sandwiches.

Love-Hope-Faith,

Mel

And keep the encouraging messages in the Guestbook and food coming. We actually have our own fridge right now in the PICU.

December 24th

(12:45 AM)
Kennedy update:It was two steps forward and one step back, but it is moving exactly how her drs expected. The GREATEST news of the day is that her medicine is en route!!!! It is true! After trying desperately to reach someone in Como, Italy with little success, Dr. Olson began working to find some here in the US. As a Christmas miracle, she did. Boy, is it funny how things work out. She was told the person who had it was in Cleveland but was given a North Carolina phone number. Darlene called and confirmed that it was North Carolina and after jumping through the hoops (just before 5 pm their time on the 23rd) to get the FDA to let Kennedy have it, an angel in disguise hand delivered 3 boxes to Fed Ex to be overnighted to our baby girl. This was the best news we could get! It will arrive tomorrow afternoon and she will recieve it shortly after. On Tuesday, when Italy reopens, Dr. Olson will have to reorder enough to restock NC and get Kennedy all of the doses she will need but this gets us moving on it. She told us that without this drug, the survival rate was about 20% and with it about 50%. Amazing how in May we groaned about a 70% cure rate at 5 years off chemo. We gladly are taking the 50%. Kennedy has some big things on her side-she only has liver failure as opposed to multi-organ failure and she has not had a liver or bone marrow transplant. The thing hurting her is that she also has the DIC to deal with, hence the need for this experimental drug. While it appears that it has not been studied on children, they do believe it will work the same way. They assured us it will not worsen her condition but there is the possiblity it will not help. A very slim possiblity! The rare times they have been able to use it for children they have had very positive results. We could not have been more excited just to hear a possible cure was on its way to Portland. It was God’s hand as every piece had to fall in to place to make this happen on the biggest holiday of the year and on such short notice.

She is beginning to fill with fluid again and they plan to drain it off tomorrow morning at the latest. It is affecting her breathing again, though not enough to require incubation. We had a couple scares this evening, first Kennedy was coughing and stopped breathing. Her oxygen saturation levels dipped into the 60s and her respiration, when she resumed breathing, was quick and shallow. They moved her back from respiratory therapy every 4 hours (or every 2 hours as needed) to every 2 hours. They also increased her Versed and Morphine to keep her calm. She is doing better but they are watching her blood gas levels very closely as she seems to struggle getting the CO2 out more than good oxygen in. Second, she was straining when she was agitated and burst a blood vessel in her eye. While this was very upsetting for me, the majority of the white part of her eye is now blood red, the nurse was not concerned and this helped me to relax a little. My biggest fear was spontaneous bleeding from her eye but this doesn’t seem to be the case.

I saw April and Josh Brenneman on the School Age side today and was thrilled to have the support of someone who has seen many trials over the last year. Her words of encouragement and empathy were priceless. Josh looked wonderful and has the most beautiful hair on his head. We rejoice with them as they are all home for Christmas this year and will continue to pray for them as they face the future and its obstacles. I’m sure we will have the opportunity to catch up with them again soon.

Also, many thanks to my sister, Katy, Kim and Becky for the food and tons of laughter. I REALLY needed all of it and my spirits were definitely lifted as we laughed about silly kids and husbands (not to mention all the other girl gossip). It was EXACTLY what my heart needed today. I’m so grateful my dad has been able to be here and could bring my little Bubba up today despite it being hard for all of us. Mom brought me the things I needed (thanks for the deo!) and took care of things at work for Keith so he could be here-and that is a HUGE blessing. Last, but certainly not least, thanks so much to my dear brother-in-law, Jeff, and his mother Kathie who have made it possible for my sister to spend 2+ nights with me. You all have no idea how much this all means. (Still keep the home cooked meals coming!!!) Oh, and thanks to Amy (Kennedy’s PT) for the muffins and all the nurses and staff who love our daughter so much that they find free time to visit and encourage us. And how could I forget Dr. Skau. He showed up to see me at my best (again) this morning and offer his soothing words that always take the edge off. He is the BEST pediatrician and along with the other docs (we love you too!) and the incredible staff at EPPC, they have supported us since before Bubba was born through every cold and stitch and staple and now the big stuff to make our lives so much easier and during this time, bearable.

Well, I hate to cut this short (for me anyway) but I am exhausted and Daddy is on watch to night so I want SLEEP and a shower!!!

Until tomorrow,Mel

(11:49 PM)

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

December 26th (I couldn't even write on Christmas Day)

(12:53 AM)

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

December 27th

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

December 30th

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

Christmas present...2008...coming soon...

3 comments:

Liz said...

Oh, Mel. What a nightmare you have made it through. I cannot imagine... you are my hero and I don't say those words lightly, Mama. You've gone to a very dark and terrifying place... and are able to share it with others. You inspire me...

Amy said...

Mel, I am in tears. I cannot imagine the terror of living through all of that. Thank you for sharing your story with us. It will help me appreciate your -- and my -- here and now even more.

Mrs. Darling said...

Merry Christmas Mel. I have a gift for Kennedy for Christmas so I have to see you when this snow storm is over. Maybe one day in January I can over and help you clean house and do laundry and bring you Kennedys gift. You sound totally overwhelmed. I Love you and take care of you this season.