Courage for Kennedy – Journal


January 30, 2006

Things are Calming Down…

Category: General,Gratitude,Treatment – Melenie 12:01 pm

It’s amazing how quickly things can go from critical to almost normal. A month ago, Kennedy was still in the PICU fighting and now she is antagonizing her brother.

Friday, Kennedy had a counts check and I thought we would be getting chemo. This Interim Maintenance 2 phase is really confusing. Apparently because her numbers weren’t good on the 20th (scheduled chemo day) they needed to take them again in 4 days (the 23rd) and while they weren’t high enough to get IV Methotrexate, it was absolutely necessary to give the Vincristine at full dose. So, then we went in on Friday (the 27th) and she is not due for chemo until tomorrow (the 31st). It looks like her platelets will be high enough tomorrow so she will get more Vincristine and IV Methotrexate. Because she had a hard time metabolizing it (due to her liver) and it took too long for her blood counts to recover, she will only be getting 80% of what she got last time as opposed to the 120% increasing dose. If she handles this well then in 10 days she will get 100% again. Her liver is still not processing enzymes or ammonia well, so it was necessary to increase the Lactulose again to 20mg/2x per day. We were all so happy. NOT! It causes almost continuous diarrhea. Thank heaven for Butt Paste-yes, that’s really what it is called and she would be in a world of hurt without it. She also pulled her NG tube out on Thursday, purely by accident. She was behind the front door getting something out of her DVD bag and it got caught on the zipper but then I opened the front door from outside causing her to sit and out it came. I was shocked that it was just lying and the floor and Kennedy was totally oblivious to it. She has been eating a lot so after talking to Tricia, we decided not to put it in at that time. We still however, have 5 ½ cases of Peptamine Jr. worth over $1000 that we will have to pay for because the insurance company decided not to pay it after pre-authorizing it. We are going to keep it rather than donate it until Kennedy goes in to maintenance so we don’t have to buy it again if she needs another NG. We will be fighting them and hopefully getting reimbursed for all of these expenses. I guess either way it will be fine as we can use it as a tax right off! Always trying to see the glass half full!!!

Saturday I met my sister for breakfast and then we headed to a day of Scrapbooking with her friends. It was so much fun and I was able to get Austin’s 2nd book finished and get started on Kennedy’s 2nd book. It was nice to have girl time and laugh and talk about kiddos and husbands and such. I will just leave it at such but they all know what I’m talking about! Tammy generously opened her house and everyone made me feel so welcome. She even sent me home with what was left of dinner-yummy enchiladas! They were fabulous! I was totally crashing around 6 pm despite their enthusiasm to scrap all night and went home early to hit the hay. After having the kids all day, Keith went to get some quiet time by heading out to a late showing of Underworld. Not my idea of a good time so I just went to bed. Sunday we had a date afternoon and ate at our favorite place: Chang’s Mongolian Grill.

I do have this nasty chest cough thing that is hanging on and I even pulled a muscle in my side last night so please pray for healing and that it doesn’t become pneumonia. It’s hard to justify going to the Dr. when my only symptom is a cough-no fever, stuffiness, ear ache, etc.

I was thinking the other day…God does not promise that our life will be free from adversity or troubles when we choose to follow Him, only that He will walk beside us and carry the burden. This life has been full of struggle and at time overwhelming but boy, has it been rich. I am having a fabulous time and I am learning something new and wonderful about Him every single day. He is showing me things I have never dreamed of and allowing me to share those experiences with others in ways I never could have before. Is this journey hard? Does it hurt? Sure, but oh the blessings that He has given me and the insight has been worth every tear and every stumble. It is true that we do not learn from our successes in the way that we learn from our failures and we can not possibly comfort others in a genuine way when we do not understand the darkness they are walking in. Despite all that I have walked through (and that is for another day), I can look at my life and see tremendous blessing and richness far beyond what is in my purse. Had I not walked through so much before, I could NEVER have walked through this journey with Kennedy. I would have been swallowed up in darkness if I had never seen the triumph that comes after the journey-the pure and illuminating light that comes when His path is followed and healing has taken place. I know that I know that regardless of how this journey ends, He has a plan and his purpose is for a greater good. We do not have a heavenly Father that would allow suffering without having an incredible reward. I know that we may never see how He uses this but I know without a doubt that something miraculous will come of it. After we almost lost Kennedy over Christmas, I began really thinking about and praying about what my part is in this journey. I can NOT be God to Kennedy or anyone else (nor do I want to be) but I do have a part to play. Whether we have Kennedy for a year or 80 years is not up to us but what kind of quality of life am I offering to her, Keith, Austin, my parents, grandparents, sister and family, extended family, friends, those I come in contact with everyday and most importantly myself. What is the quality of my life here? It is not about possessions or money. It is not about vacations or success. It is about living the life that He would have me to live. It is about having Jesus shine through me everyday in such a way that there is no question as to who I follow. It is about sharing my life with those I love and care about the most and making them a top priority in my life. It is about showing kindness to everyone-even the creep on my tail that I just have to let pass. 😉 It’s about fulfilling His purpose for my life and laying mine aside. What I have found in reading about others journeys is that when we truly listen to Him, His desires for us become our desires and we truly are fulfilled in all we do. Here’s to following His purpose for your life-May you always see the right path for you.

Many heartfelt sympathies and love to Nikolette’s family. She ended her battle with ALL on Friday, January 27th after fighting for over 10 years. God and heaven are rejoicing at the sight of their new butterfly.

A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul. ~Author Unknown

Love-Hope-Faith,
Mel

I’ve Been Tagged!

Category: Treatment – Melenie 10:47 am

My dear friend Becky has tagged me! Really, it’s true…

Four jobs you have had in your life:

-Drive through girl at McDonald’s
-Athletic shoe salesperson at Athletic X-Press
-Receptionist for a collection agency
-Photographer for Olan Mills

Four Movies you would watch over and over:

-All of The Lord of The Rings movies
-The 13th Warrior
-Anne of Green Gables
-Wizard of Oz

Four Places You’ve Lived:

Portland, Oregon
Kent, Washington
Yakima, Washington
Mulino, Oregon

Four TV Shows you love to watch:

-ER
-Judging Amy
-Law and Order SVU
-Oprah

Four websites I visit daily:

-Growing Acorns
-Help Rebekah
-CaringBridge sites: Josh, Oliver, Kaitlin, Gage and Warren
-Courage4Kennedy

Four of my favorite foods:

-Chang’s Mongolian Grill
-Szechuan Kitchen
-Mexican food
-CHOCOLATE

Four places I’d rather be right now:

-in my bed taking a nap
-at school (GO BEARCATS!)
-somewhere tropical with just my husband
-Disneyland with my family

Four bloggers I am tagging:

-You’ll have to wait and see! 🙂

January 26, 2006

Indoor Garage Sale

Category: Treatment – Melenie 10:58 am

The organizers had a little glitch in their e-mail and lost all of it. If you had sent them one regarding the sale or donations, we would appreciate you taking the time to re-send it so they have time to respond. We really are blessed that everyone wants to help so much and could never do it without you. Thank you, thank you, thank you for taking the time to do this for us-You all make it possible to keep fighting!

Love-Hope-Faith,
Mel

January 24, 2006

Just Another Day In Paradise

Category: General,Treatment – Melenie 7:51 pm

Well, we survived another day at the clinic and we got some good news and some not so good news (I just hate to say bad news at this point!). Kennedy’s bilirubin levels were low enough to receive her Vincristine (Mean Christine) and her white count is in check. We were so excited to see Kaitlin and her mommy and are absolutely thrilled that they will be joining us in Mulino! It’s true! They bought property near us and are building a house! How fun for all of us. Keith and Roger actually knew each other before the girls were diagnosed and we met in day treatment. The girls are only a year apart and we can’t wait to get them together outside the setting of the hospital. Kennedy has also gained 2lbs this week. I’m sure it has a lot to do with the fact that she is no longer vomiting and eating in addition to receiving formula through her NG tube.

Now the not so good news…Kennedy had pt today and it was obvious to Amy that her foot drop is significantly worse. She is now walking with a “toddle.” She walks with her feet apart and toes pointed out, then she toddles back and forth to get where she wants. Dr. Olson said that she now considered at Level 3 toxicity to the Vincristine. At Level 4, when she is unable to stand unassisted, they will either discontinue the Vincristine or significantly modify it. Amy will be talking with Dr. Shih to get Kennedy some different style foot braces that will have a hinge allowing her foot to pull up but not flop down. Because she has many doses of Vincristine left, she will be wearing them for a while. Dr. Olson again brought up the idea of testing Kennedy for a genetic disorder called Charcot-Marie-Tooth Syndrome. CMT is defined by Linda Crabtree as “It is also called peroneal muscular atrophy because the peroneal muscle down the front of the shin that enables you to pull your foot up is usually the first muscle to be affected. A weakened peroneal muscle can cause sloppy walking, drop foot which causes tripping and you must lift your leg from the thigh so that your toes clear the ground and your foot slaps onto the ground, hopefully heel first.” Check out her website at http://www.kaikracht.de/cmt/english/text.htm for more information. She will first need to have a EMG or electromyography to determine what strain she should be tested for. An EMG is a test that assesses the health of the muscles and the nerves controlling the muscles. You can find more information about this test at http://www.nlm.nih.gov/medlineplus/ency/article/003929.htm. It is not a rare condition but is not often seen in children. It most often affects older people but because my grandparents had diabetes, polio or died young, it’s very hard to tell if they had it without testing them. Unfortunately, all it means is that they will be more aware when dosing her chemo and in treating her for therapy. Kennedy also was given a new prescription to deal with the side effects of Vincristine. She has been having severe pain and says that it feels like “needles coming out of her skin.” It is common to have a “pins and needles” sensation similar to your foot waking up but what she has is more than this. She literally tenses up and screams. It is often centered between her shoulder blades which is also frustrating because she can’t reach it. This new med will hopefully help ease this pain or at least decrease it’s frequency. Kennedy’s counts were also too low to receive her IV Methotrexate. Her platelets needed to be 50 but were only 46 so we will be back on Friday to check her counts again. I guess it is always something!

Oh, I forgot to mention that it looks like the “boot camp” therapy is the plan. Kennedy will be so thrilled after the episode she had today! She had decided that she was done walking and navigating unstable surfaces and just gave up. She began screaming and demanding that she needed me. It was very difficult for me to stand by and not rescue her from her work. I try not to intervene unless absolutely necessary so I stood by even after she went to the “quiet room” with a timer to regain her composure. I can understand her frustration but also know how important it is for her do her exercises. Boot camp ought to be a blast 🙂

Things continue to go good here though. I’ll be glad when she gets back to her normal sleep patterns. Being in the hospital for so long only confuses your body about normal cycles with night and day so we are having problems getting back to that. Check out our fundraisers page for the upcoming Indoor Garage Sale. Oh, and we are working on the guestbook issue so please do not despair. We meant to stop in and see Rebekah today but we finished up at the clinic just in time to get Austin from school-hopefully we’ll see her and her family soon.

Pray for all the kiddos fighting cancer or working through the effects of treatment including:
Gage
Joshua
Oliver
Nikolette
Madeline
Kaitlin
Rebekah
And many, many more…

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown

Love-Hope-Faith
Mel

Catchin Up On Life

Category: Treatment – Melenie 12:17 am

Now that we’ve been home for a few days it was time to get back to our real lives. I had the pleasure of paying bills, cleaning my messy bedroom/office, doing laundry, etc. And for all that hard work, I treated myself to getting my hair done and a little shopping (I needed a new pair of jeans that fit since I lost 10lbs!). My sister watched Kennedy today while I had my hair cut and colored. Many thanks to Kim for only charging me for the cut! Then I decided to go to Old Navy and find a pair of jeans and walked to Borders and got Keith a new Thomas Guide of the NW for work. Not exciting but a big treat for me. If that wasn’t enough, Caryn made me yummy Chinese chicken salad for lunch! The only thing that could have made it better would have been a nice, long nap.

Austin returned to school today-finally. He’s still coughing a lot but at least we can manage it now. As he has gotten older, his asthma attacks have been less frequent but more severe. Please continue to pray for him; he has missed so much school this year. We did get his report card today and it was fantastic despite his frequent absences. He earned all A’s and B’s and even brought some B’s up to A’s this past quarter. We are so proud of his achievements! He is such a wonderful brother-always getting Kennedy water, toys, diapers and helping with her medicine or entertaining her in the hospital. It is easy to forget the silent survivors in this-the siblings. Many times his needs are moved to the way side because hers are so demanding. He spent his birthday and Christmas Break either with friends and family or in the hospital. He has spent a lot of weekends there or at home because we couldn’t go anywhere. He has struggled to eat dinner while his sister is losing hers and been woke up in the night because her bed had to be changed. He’s been asked to retrieve clean clothes, towels, diapers and wipes, medicines and blankets. He has spent late nights in the ER or in the hospital room. He has spent days away from his mommy and dad. He has had to learn lots of new medical terms and explain them to everyone-family, friends and strangers. He has cleaned up puke in the car and held the bowl for his sister. He shaved his head and had to explain to all of his friends why. He has had to worry about his sister dying and wondered if his parents were losing their minds. He’s been taken to baseball and soccer games by his friends and grandparents and hoped his mom and dad could show up. He even missed out on a birthday party because people had colds or coughs and could not be around Kennedy. He’s gotten to know every inch of the 3rd floor at Emanuel and pulled the wagon around and around more times than he can count. He has pushed the wheelchair and stroller to the clinic, carried the diaper bag, been forced to watch princess movies over and over and over, and played with his sister to coax her in to doing her exercises for physical, occupational and speech therapy. Tonight, Austin is my hero. I couldn’t be more proud of my little boy. Thank you to everyone who has taken the extra time to send him cards, encouraged him, spent time with him, taken him fun places or had him overnight to distract him and notice how important he is in all of this. It means the world to all of us.

Kennedy has been doing very well. She is not only tolerating her feeds through her NG tube, but she is eating as much as we can give her. She has even began asking to use the potty instead of her diaper! Yeah for Mommy!!! I would guess that her counts are recovering as she looks great. She is walking but has a very awkward gait so we’ll see what Amy has to say tomorrow. We are looking forward to seeing Kaitlin and dropping in on Rebekah and her mommy. She is scheduled for chemo so we’ll see how that goes. I’ll be updating soon on how things went.

Sometimes being a brother is even better than being a superhero. ~Marc Brown

Love-Hope-Faith
Melenie

January 21, 2006

Home Again-Another Short Stay

Category: General,Gratitude,Treatment – Melenie 9:41 pm

Well, we had a whole 6 days out of the hospital before we had to stay again at Hotel Emanuel. We just can’t stay away from the luxury suites, gourmet food, unlimited amenities and pampering staff-okay, I’m sorry for the sarcasm but I wasn’t kidding about the pampering staff! There are definitely benefits to being a frequent flyer.

Kennedy had count checks on Monday and I was not surprised to see that her red counts were very low. Because her appointment had been in the afternoon, it was really too late to get blood so we decided to return Tuesday. Kennedy received a unit of red cells and everything seemed to be cruising along fine. She was feeling so good that we were able to join Grammie, Papa, Bammie Kathie, Uncle Jeff, Auntie Caryn, Emily and Amber for dinner at Szechuan Kitchen for Auntie’s birthday. Kennedy even ate some of their infamous egg drop soup-for those of you who know her well, she will eat this no matter how crappy she feels. After heading back to Auntie’s, to get in to her jammies and say goodnight, we headed home and she crashed out. As I was laying her in bed, she started vomiting blood; not just old blood but bright red with clots in it. This sure woke us up. I was bummed for her but also because I really wanted to sleep in my own bed and read my book. I called Dr. Olson and she thought it would be a good idea to do a direct admit to receive platelets. A direct short-stay admit allowed us to avoid the ER which is very traumatic for Kennedy. After arriving, and being admitted by our favorite RN-Megan, Kennedy continued to throw-up blood and we had no choice but to deal with the resident who was on. Now, I realize that the residents have to use this as a learning experience and are the eyes, ears and hands of the drs. when they can’t be there, but they drive me crazy! Dr. Norwood reminded me recently that he was once a resident-I told him that I would not have liked him either. Every month it is someone new and they always ask the same questions…again, and again, and again. I want to ask them if they have read her chart-I mean, 8 months later and they’re still wanting me to recite the story of how we found out Kennedy had leukemia. Anyway, she had not written the orders for platelets despite the fact that we had been there over an hour! By the time the platelets arrived, were administered, Kennedy received Zofran for vomiting and was hydrated, it was after 2:30am. So much for a short stay. I arrived at h0me in time to see my husband out the door to work.

I was able to sleep a whopping 2 hours before Kennedy started having horrible diarrhea. Now, for those who do not want the graphic details skip the next few sentences. *The first diaper leaked on my bed and was thick, gooey and bloody. The next 4 were also yucky but managed to stay in the diaper. When I stripped my bed, it was actually bright red despite being dark in the diaper.* I called the clinic but they were swamped and after 30 minutes no one had called me back so I called and asked Darlene to get a nurse. Now, on top of dealing with this, I also had to find a way to get Austin back to the doctor for his asthma. He had been having problems for a while and had even seen Dr. Skau on Friday but he did not seem to be improving. I was able to get Kennedy in at 1pm and Austin at 3:30pm. I figured that way either I would be able to take him or Keith or my mom would be off in time to take him.

After arriving at the clinic, we found out that while Kennedy’s platelets were stable, her red counts were shot again. All I could think was, “Oh my God! Didn’t we just go through this?” She fell asleep and I began to worry as I watched her cheeks get more and more flushed. Sure enough, she had a fever. As most of you know, a fever means an automatic 48 hour stay. They probably would have asked us to stay anyway because of the unexplained bleeding. Keith arrived in time to take Austin and after adding another med to his regimine, they returned so I could go home and get a few things to get us through for a couple of days. Kennedy was admitted and there were orders to receive blood and an abdominal x-ray to check for bleeding. Dr. Olson thought it could be that Kennedy had developed vericose veins at the base of her esophagus as the result of her VOD and that the NG tube could have irritated them. Combined with low platelets, this would cause bleeding in her stomach. They started Kennedy on IV antibiotics, started her feed back up and waited. By Thursday she had no more bloody stool or vomit and was onery as could be. She also had no fevers but that night her cultures came back and it revealed that she had a bacterial infection in her PICC line. Now, to go home, she needed to be fever free for 24 hours and have 2 negative blood cultures. This put us going home possibly Saturday. Ugh!

On Friday, Dr. Olson came by to say that she had decided that Kennedy was doing so well that we were going home (good thing because Kennedy was FULL of energy) it was just a matter of whether or not we went home with antibiotics for her PICC or not. After some consideration, she decided to just pull her line. I had mixed feelings about this-I mean all the work it took just to get it in-but decided it probably was our best option. Kennedy was less than thrilled to say the least but when she was ready she wanted it done immediately. Our disappointment in leaving so early was that we had been so happy to have Nurse Raeann. She is usually working in rehabilitation now so it has been awhile-Kennedy loves stories about naughty Roxy (her pug). She also loves stories from Amy (pt) about crazy Lucy. Soon we’ll have stories about our own wild Bailey (Kennedy’s dog at Papa’s).

Before we left, Kennedy had her therapy evaluation with Dr. Shih. After talking with us, he would like to have Kennedy re-evaluated by occupational therapy, read the assessments from physical and speech therapy and look at doing a “boot camp” style outpatient with Kennedy for 2 weeks (really hard 4-5 hours 5 days a week) then back down to 2 hours/week of pt, 1 hour/week of speech and 1 hour/week of occup. Of course, we have insurance to deal with. Speaking of, we just received a letter today saying they will not pay for dietary (what??? for a child who doesn’t eat???) or home health care! It is so absurd!! Many thanks to Gina, April, Al and Kim for giving me information regarding groups that will be able to help us in addition to fundraising. What a pain!!! Maybe when I finish school, I will make a career change working for healthcare/insurance reform. I hear that both Kitzhaber and Kulongowski are interested in this issue-while I won’t give up being conservative, I would be glad to give them input from a personal perspective!

Oh, Kennedy was supposed to have chemo on Friday but as you can imagine it didn’t happen. We have an appointment in the clinic on Tuesday so we’ll see what the plan is. It is not only dependent upon her blood counts but also on how her liver is functioning. Her liver hmm…according to Dr. Barclay she is doing just what we expect her to. Her numbers are still considered high by normal liver function but they are getting closer to normal-they are definitely stable.

Check out our fundraiser page for information regarding the Indoor Garage Sale. If you have anything to donate there is information on how to get donations to the site and there are also flyers available for print to promote the event. As you may have seen, both bracelets and t-shirts will be available soon. The bracelets have been ordered and I think we have finalized everything on the shirts to move them to production. This is so exciting! 🙂 I also know that there are other fundraisers in the works so check back soon.

Austin is doing better-he missed a whole week of school due to asthma-and I think we have it under control. I must say that having both kids to entertain at the hospital was a little much!

I also would like to thank Soft Star Shoes (Check them out in the links section) for their generous donation of shoes for Kennedy! Their elves are absolutely wonderful! They make shoes for all ages and the quality is outstanding. Every pair of shoes is handcrafted of top quality leather. Thanks to our neighbors, the Graves, for their generous donation, thanks to Kim and Roxanne and so many others at Arthur Academy for the Christmas gifts and food, thanks to Oregon Catholic Press for their generous monetary donation, thanks to all our close neighbors for their prayers and love and concern, thanks to Peter and Elaine for the donation of “Lunch” and “Dinner,” thanks to all who have made donations through her bank account and this website and for all of those leaving caring, loving messages in her guestbook and all who pray, love and adore our little baby. You are all so wonderful and we could never do this without you. Thanks to her nurses who are so devoted to their jobs and us as a family. Thanks to Becky for support and this website-you are the best. Thanks to everyone with advice and help in dealing with insurance. Thank you to Kristy Parrish and her stamping friends for the beautiful hand-made cards that have come for all of us from all over the US. Thank you to our family and friends for doing all that you do. Thank you, thank you, thank you to all of you; you all make this journey easier to walk. We are so blessed and ultimately we thank the good Lord for everyday.

“In prosperity our friends know us; in adversity we know our friends.”
John Churton Collins

Love-Hope-Faith
Melenie

January 15, 2006

Cruising Along

Category: General,Treatment – Melenie 9:09 pm

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

January 12, 2006

Update – Kennedy is improving

Category: Treatment – admin_c4K 12:20 am

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

January 11, 2006

Please Pray For Kennedy

Category: Treatment – Melenie 12:16 pm

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

January 9, 2006

Category: Gratitude,Treatment – Melenie 12:51 pm

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