We just love the nurses at Emanuel so much we can’t possibly stay away! 🙂 Ok, we do love them but we wish we could visit with them outside the hospital. Kennedy couldn’t make it until Tuesday and now we’re not sure if her counts will be good enough for her Ara-C. She had been running a low grade fever (99-100) the days following her chemo but we expected her ANC to continue to rise. By Friday evening her fever was over the magic 101 (101.3) and Dr. Olson had us return to the ER (we were just there on the 4th) for a CBC (complete blood count), blood culture and a dose of antibiotics. If her ANC was over 750, we would be able to go home. It was only at 200 and her WBC was at 0.8 so we were admitted. Not only admitted, but sent to a “clean” room with the HEPA filter, door monitors, etc. Her temperature has been between normal and 100, and she has been playing but it is still a mandatory 48 hour stay. When Dr. Olson came in today, she said as long as there were no spikes or bacteria growth in her cultures, we could go home sometime tomorrow. We’re praying that things go well. On a good note she has had both of her favorite nurses, Megan and Melissa. Today she played playdough and painted nails with Melissa. When Megan came on she brought Kennedy’s picture of Gretchen Wilson and they sang both Redneck Woman and Homewrecker. Megan brought her camera to take a picture but Kennedy would barely sing, let alone stand and perform; maybe next time. Daddy and Austin were here all day and the kids had a lot of fun playing. We decided to order pizza and while Kennedy didn’t want any, the rest of us scarfed it up. Austin especially loved the breadsticks. Tonight Auntie Caryn came to stay the night with us. We had a great time watching a movie, eating pizza and making “tooting” sounds with our mouth, tummy, legs and straws (long story!!!). The kids, Caryn and I loved the potty humor but I think Keith was embarressed by our rowdiness. This was the first time I had showed anyone the straw trick besides the kids and he did not know what to think. It was a hit with Caryn, and Megan and Caryn think I should go on David Letterman’s Stupid Human Tricks. After all of that, Kennedy crashed!

Ok, gotta run. I am totally exhausted tonight.

Sweet dreams,
Mel

Kennedy met her new Chemo Pal, Amy, yesterday. I was really worried that it would take a few visits for her to warm up but she liked her instantly. She was drawn in by the story books and within a few minutes was actually talking to her. We requested that she not wear a badge, since Kennedy doesn’t trust anyone with a badge anymore, and I’m sure this helped. She had a great time playing games, looking at books, doing puzzles and playing with the Madeline stickers. It was a nice change from her usual mood the morning of procedures. Typically the day starts off bad because she has to go without breakfast and within a few minutes of arriving she has to have her port accessed. After what happened at the ER I was worried it would not go well but she did better with Nellie and Libby, of course she knows them though. I was just so delighted that she enjoyed playing with Amy so much. Amy told us that she is a 6th grade teacher in the Beaverton school district. She was a cheerleader and dancer, Kennedy was thrilled to hear this, and went to school at Linfield in McMinnville. She even has a brother four years older, just like Kennedy. We couldn’t ask for a better match; Amy is a delight. Kennedy is looking forward to playing with Amy again on Tuesday when we will be in Day Treatment all day. When it was time to go, she said goodbye and had no problem going to the procedure room. What a nice change!

Kennedy had another LP yesterday and more Methotrexate in her CNS (central nervous system/spinal fluid) and the ever lovely Vincristine. She slept all evening, was up for a few hours and then slept until 10:30 this morning. She was exhausted. She doesn’t have a lot of the nasty side effects she has had in the past but of course it has only been 24 hours. We’ll see how she feels in a couple of days. Next week she is back to 4 days of Ara-C. Her platelets were good, after her middle of the night transfusion in the ER, and her RBC was good but her WBC was critically low. This made her ANC 440. Dr. Norwood said that it must be 750 by Tuesday for the Ara-C otherwise she is at high risk for a bacterial blood infection. He does not believe the chemo she had yesterday would cause her numbers to fall, but we are just lying low so she won’t pick up a virus by then. She was mad because Emily was supposed to stay the night but it will have to be in a couple of weeks. If her numbers are low then it will delay the Ara-C another week-something we do not need. Then she’ll have 3 days to recover before she gets another 4 day dose. I will be posting her treatment schedule for the current phase so everyone will have an idea of where she is at. Of course, it is always tentative and many things could affect the schedule.

Holly and Sammi watched Austin yesterday. He had such a great time that he wanted to go back today even though Kennedy didn’t have chemo. I told him maybe next week since Tuesday will be a long day. Kennedy will be getting Cyclophosphamide which takes 30 minutes. She must have 2 hours of fluid prior to the dose and then 4 hours of fluid after. This is to ensure that her kidneys will process it without toxic build up. This chemo drug gave her a very unusual metallic smell for about 48 hours. She also ended up with a 6 day hospital stay after this and the Ara-C. Not fun at all! Please pray that it goes well and Kennedy does not have to be in the hospital. I know she is looking forward to attending the Spaghetti Feed and would be disappointed if something happened.

On a note of good news, Kennedy qualified and will be receiving SSI benefits while she is in treatment. We have a follow-up interview tomorrow via phone and then her benefits will begin. They are retroactive to the date of her diagnosis, since we applied ASAP, so that will help. We’re still examining all of our options for insurance coverage because I am very worried about what will happen with OHP.

Please pray for:

-Kennedy’s health, healing and chemo
-Austin
-Melenie
-Keith
-work/finances

-Warren, a 12 year old with Burkitt’s Lymphoma who is having a very difficult time with side effects from his chemo schedule. His tumor is gone but he still must finish treatment to ensure it does not return.

-Maggie, a 3 year old with very rare mixed-lineage leukemia who began radiation and intense chemotherapy to prepare her for her unrelated donor transplant.

-Oliver, an 8 month old fighting AML leukemia and just recently diagnosed.

-All the kids fighting for their lives in their battle with cancer.

Thank you for everything. We love you all so much!

Melenie

When Kennedy was first diagnosed, we heard the doctors, nurses and other families describe the journey as a rollercoaster. While the first two weeks of induction were crazy, things slowed down and returned to “normal” for the last two weeks. We assumed that when induction was over things would begin to stabilize but it just continues to be crazy with corkscrew turns, steep hills, sheer drops and upside down loops. What a wild ride! Kennedy has been handling the side effects of Vincristine much better this time. Her WBC has risen and dipped and risen again. Her platelets however, have suffered terribly this round. As I mentioned on Saturday, her platelets were low (76), remember normal is 140, but we were sure she could make it until Tuesday when she was scheduled for her next round of chemo in Day Treatment. When she woke up Sunday morning she had about 5 noticable bruises and when I brushed her teeth, she had 4 spots that bled a significant amount. I continued to watch her and by the evening she had close to 30 bruises and had not been playing rough or fallen. I called Dr. Norwood who told us to watch her and call him in the morning (July 4). She woke up about 11 pm with more bruises, that were red, and petechiae on her legs, arms and torso. I called him back and he told us to go to Emanuel’s ER for platelets. Kennedy has experienced internal bleeding in her kidneys and stomach with low platelets before and he felt it could not wait until morning. He called me back to remind me to pack a bag because if Kennedy was running a fever we would not be going home. Keith and I drove to Emanuel despite being exhausted. After finally becoming comfortable with the staff at the Onc/Hemat clinic, Day Treatment and peds floor she encountered strangers who wore gowns, masks and gloves and wanted to access her port. She was horrified and began screaming and crying. We had to hold her down while they accessed and taped her port. It was terrible. I do realize they were doing their best, helping us and doing their job but I HATE going through this crap! We no more get her comfortable and used to things when something else happens that blows it! The good news of the night was her favorite nurses (Megan) popped in to see her. We were relieved. It always feels better to see a familiar face. Kennedy’s favorite singer is Gretchen Wilson (Red Neck Woman) and Megan had been to the concert last weekend. While she was there she bought Kennedy a poster. Kennedy was excited about it today but was just too upset last night. After receiving platelets, and because she did not have a fever, we were free to go and crashed in our beds around 5 am. I do love a good sunrise but I was not happy to see the one this morning 🙂 The ER staff was wonderful and got us through as quickly as possible, it was just that the whole ordeal was traumatic.

Last night at the ER as we walked by the room where Kennedy was diagnosed, I realized today (Monday) was 8 weeks for us since we heard the words “leukemia” and “your daughter” in the same sentence. Wow. A lot has changed in just 8 weeks. I still long to run back in time to before she was sick. The feeling is worse when I see pictures of her or watch a home video. This horrible sinking pit in my stomach returns. I still feel like I have jumped out of an airplane with no parachute. I struggle to grasp something to keep from falling. I now cling tightly to my faith. It’s amazing. The last couple of years I have really struggled with my beliefs and my faith. Going to school has made me question so much of what I thought I knew. From the moment of Kennedy’s diagnosis, the moment we heard those words, I knew without a doubt that God had a purpose and plan for Kennedy and our family. It was faith in its purest form. A trusting and believing I have never felt through all of my trials. I know that no matter the outcome, that God will use our experience to bless others beyond anything we can imagine. It is this faith and undying hope that allows me to have strength for my trials and strength for my family. I am extremely grateful that so many people have prayed for Kennedy and shared with others her story. God continues to provide exactly what we need for each and every moment.

On the note of God providing…after having a crazy night, and early morning, my Auntie Sue and cousins Holly and Sammi came over. We always laugh like crazy together and I needed that to uplift my spirits. Holly shared something wonderful, 50 minutes of laughter is equivalant to 30 minutes on a treadmill. I certainly did well today. In addition to bringing Kennedy a wonderful horse that she loves to sit on, a new Barbie plate, a beautiful bandana for her hair, a soft knitted chemo cap and “fancy” (in her words!) zipper pull, they brought laughter and funny stories to our house. Holly shared her stories from Mexico (including a touching story about the family they built a house for), Sammi shared her gorgeous new smile (no braces) and Auntie Sue shared her magical laughter and warming hugs. It was exactly what we needed. God knows precisily what will help us and we don’t always have to tell Him. Terry, our neighbor, also brought the most beautiful blue Hydrangeas over this evening to share with Kennedy. My mom normally can not have flowers in the house, but these were fine and look wonderful on our table.

Austin and Keith went to the Buckeroo. They had a wonderful time and Austin won a big Tigger for him and a husky dog for Kennedy. They enjoyed the clowns, horses, bull riders and sunshine. They needed the “guy time” and Kennedy and I needed a nap! We slept the afternoon away and Kennedy still wants to go to sleep tonight. That is a blessing.

Well, tomorrow it’s off to Day Treatment for an LP with MTX and more Mean Christine (or Mr. Grinch!) the lovely-Vincristine**** 🙁

We’ll check in soon. Lots of love and Happy 4th of July!!

Keith, Mel, Austin and Kennedy

What a difference one day of chemo makes compared to four days. While Kennedy is weak and tires quickly, she enjoys playing games again and is back to driving her Bubba crazy! Her numbers are falling (Tuesday her ANC was 180 and we want it over 1500) but she is happy to have a two week break from the 6mp (oral meds). She has new bruises despite not falling or playing rough so I’m sure platelets will be in order for Tuesday. A week ago they were below normal (140) but still respectable (127) but by Tuesday they had fallen to 76. With more chemo and these new bruises they are at least 1/2 that if not worse. We’re just taking it easy this holiday weekend. We had plans to attend the Molalla Buckeroo but Daddy and Bubba may have to go this year and take lots of pictures. Kennedy and Mommy will rent movies and have a make-up party. Phooey on sitting in the sun watching the horses, bull riders and clowns. Who wants to do that anyway! 🙁 We’ll just enjoy these 2 weeks for what we have and not worry about the 4 day a week schedule in the future! After all, the Lord says that we should be content and I will find contentment with all the blessings I do have.

Since getting her new jogging stroller, Kennedy has insisted on going for a walk out to the bridge every night. Yesterday, Kylee and Cody were here so we went all the way to the top of the pasture. While the view is incredible, my legs are killing me! She was all giggles and enjoyed seeing the hawks fly over the very long hay and diving into it. Yes, it was a good day and worth the soreness this morning. Tonight we went over and fed Colton’s baby goats carrots. “WhiteTail” got his head stuck through the fence and we had to get Jerry to nudge it back through. Kennedy was very amused by all of this and inisted if he hadn’t been trying to hog the carrots from his sister, he never would have gotten stuck in the first place. She told me she would like to have goats to follow her around too. I told her she would just have to enjoy these for now, Meow was enough pet for all of us. She was a very tuckered little girl and crashed on the couch after Austin read “Monster Musical Chairs” twice.

Her fungal infection is almost cleared up so she is feeling better. I asked the Dr. about treating with Probiotics to counter the effects but she said that with the high doses of chemo that Kennedy gets, the probiotics would be wiped out before they could do any good. It would just be a losing battle-something we don’t need.

We have already heard back from some families planning to attend the Spaghetti feed. We can’t wait to see you. While Kennedy does have OHP for the next few months there is no guarantee after that and we’re finding that some of her prescriptions are not covered. Just a vicious cycle. Now we just kick ourselves for not getting health insurance before this. It is just so expensive and with the high deductibles it seemed like it was pointless. Boy, were we wrong. Now we can’t get even the worst coverage for our family. It just seems so very wrong. Keith found out this week about a driving job with a very large local company that he currently contracts with but when he asked about health insurance, he was told there is a one year wait on pre-existing conditions. One year and she’ll be in maintenance and we’ll possibly be bankrupt. I was never a big advocate for vast social services but universal health care gets better looking everyday. Sorry, my rant for the day but it is a big worry for me and this is my place to rant 🙂

On a good note, I did find a great group of families on-line whose children are fighting/or have fought ALL. It is very encouraging to know that things get better and that there are other families making it through. I was thrilled to find one family we met in day treatment on Tuesday. Our husbands are both dumptruck drivers and actually contract with the same company so they have been on some of the same jobs. What a small world it really is!

I’m going to take a wonderful idea from another child’s site (Thanks Mark!) and ask that you also pray for the following families that are in our prayers.

Please pray for 12 year old Warren Mattox who is fighting Burkitt’s Lymphoma. He is having a difficult time with side effects from chemo and could use prayer. Also, please pray for his family during these months of treatment.

Also, pray for 3 year old Maggie. While we do not know the family well, we have been following her progress. She will be transferring to Doernbecher for a bone marrow transplant. She also has Leukemia but has a very rare form, MML which is both ALL and AML. She will be leaving on Tuesday to get ready for her transplant.

We love you all and look forward to seeing you at the Spaghetti Feed!!

Mel

The good news is that this week we are not doing 4 days of Ara-C. Kennedy did have chemo yesterday so she’s pretty wiped out today but at least we are home. They did a lumbar puncture with more Methotrexate into her spinal fluid. She has a silver dollar size bruise on her back which has never happened before but she is not complaining of pain. She also had Vincristine, which causes her to have “needle poking” sensations but giving her Benadryl seems to help with that. In addition to these, she had two shots of PEG, which is made from the E-coli bacteria, in her legs. These are not actually bothering her but this drug has a huge list of side effects both long and short term. One of the benefits to being on a research program is more information and the doctors are very interested in the effects and progress of her treatment. I have certainly appreciated all of the concern.

Some people have been concerned at the amount of lumbar punctures Kennedy has received (5 so far). The reason they are doing them, aside from dosing the Mx into her spinal fluid, is to check for leukemia cells in her CNS (fluid). This is a very serious possiblity and her doctors were extremely surprised that with her levels of WBC (200k) that she did not have this at the time of her diagnosis. By putting the Mx directly into her spinal fluid, they hope to prevent Leukemia cells from congregating there and reduce her chances for a relapse and need for a bone marrow transplant. This is also why she will be having radiation therapy to her brain. While they are giving her high doses of chemo drugs in her blood, these do not cross over at the same level into her spinal fluid and brain, therefore allowing leukemia cells to build up there. It seems extreme to us too, but healing Kennedy is the ultimate goal.

Kennedy is also being treated for a mild fungal infection which is the result of two weeks of very high dose antibiotics. This is worrisome to me but does not seem to be bothering her.

Oh, we purchased a racing stroller for Kennedy with some of the funds from the poker tournament. Now I can take her for walks around the property and she loves it. It is so good for her to be out in the fresh air. It also fits better in the trunk of the car and holds a lot more weight than a standard stroller. Thank you again to those of you who helped out and raised the money at the tournament. I understand everyone had a wonderful time.

Please see future entries for further information regarding fundraisers. July 16th there will a Spaghetti feed and raffle and July 30th a plant sale/car wash at Platt Electric in Gresham. Future fundraisers include a fall Spaghetti feed, bowling tournament (in which kids can also participate) and garage sale.

Please continue to pray for:
-Kennedy’s fight with leukemia
-Kennedy’s recovery and minimal effects from chemo drugs
-Austin’s emotions and dealing with the changes in our family
-Keith’s work/benefits
-Melenie emotional well being/opportunities
-Finances

Thank you all for the wonderful emotional support over the last 7 weeks. We could not have done it without you.

Melenie

First I would like to thank Bill, Lynn and Terry for hosting a wonderful and successful fundraiser for Kennedy. What a surprise it was! Their 1st Annual Kennedy Trust Texas Hold-Em Tournament raised $2400 for Kennedy’s trust fund. Thank you for taking the time to do this for our baby. It really means alot to all of us that we are part of your family. I would also like to thank all of the companies who donated such fabulous prizes and to all of those who didn’t even know us but came out to support our family during this very difficult time. Somehow “thank you” just isn’t enough. 🙂

Kennedy attended the fundraiser but wasn’t feeling well so she had a difficult time being social. I’m so thankful that many of the people there had seen her before and know what a social butterfly she can be. After 4 days of chemo and running a fever she was probably as pleasant as she could possibly be. She hasn’t been eating much (the equivalent to less than a pb & j sandwich a day for almost 2 weeks) and has not been drinking much. I’m concerned that she is losing weight and I am watching her for signs of dehydration. Sadly, I have to force her to take meds and do not want to force feed her. Either nothing sounds good or it doesn’t taste good once she takes a few bites. I bought some Pediasure today but she didn’t like it. I was hoping she would because I know she needs the vitamins and calories. We know all the high-calorie, high-protein food she should be eating but she won’t eat even ice cream. If anyone has any advice, please feel free to e-mail me directly. I’m getting desperate. I know that when she is hungry she will eat but she has now lost the weight she gained back and is around 37 lbs. Before she got sick, this was a child who would eat two sandwiches for lunch or an entire small pizza by herself (not an individual one). She was a hearty eater and loved drinking water. She just seems so tiny to me now. My fear is we could return to the hospital for nutritional supplements and fluids. Of course, she is trying to control anything and everything she can and even when I explain to her the importance of eating and drinking she will do what she wants. We could definitely use prayer in this battle.

Many people have asked whether or not they can make direct blood donations to Kennedy. Here is the answer: she can take direct donations from donors who are 0+ only. They will bank the blood specifically for her personal use. Because blood expires, if the expiration date is approaching and Kennedy is not using blood, they will release it for the general public. Right now she is averaging a red blood transfusion every other week. There is no cost to those who have donated blood to the Red Cross previously. They recommended that first time donors, rather than pay the $300 fee, should donate a first time to the general public and then donate to Kennedy. For those people who feel moved to donate platelets (it is a 2 hour process but harmless) you can also donate those in her name if you are 0+. When giving blood or platelets, the donor can just specify that the blood go directly to Kennedy Brooke Duval (birthdate 10/12/2000), treated at Legacy Emanuel Children’s Hospital Cancer Program. Healthy red blood cells and platelets are vital to her recovery because the chemo drugs do not differentiate between good cells and leukemia cells. Red blood cells move oxygen throughout her body-these are also the hardest for her bone marrow to make. Without them she becomes anemic, lethargic and suffers from weakness and exhaustion. Platelets are needed to clot her blood in case of an injury. They are vital to her safety and without them she has had severe bruising, petechiae (blood leaking from the veins and leaving a purple rash) and internal bleeding (in her kidneys and stomach). For those of you who feel led, this is a wonderful gift that you can give Kennedy that makes a huge difference in her recovery. With blood and blood products banked for her, there will be little for us to worry about should The Red Cross have a shortage.

These last 6 weeks have been such a whirlwind for us. We could not have made it without the wonderful love, prayers and support of our friends and family. It is heartbreaking to watch our precious girl fight for her life and I am so proud of her courage and trust in those helping her. I pray for days when she is healthy and giving her medicine will not result in a crying battle where she pleads that she just can’t do it anymore. Please continue praying for Kennedy, not just for a cure but for getting through each day; this Tuesday will be her sixth lumbar puncture and seventh week of chemotherapy. I thank God everyday for all the outpouring of prayer and love for us and I want you all to know how very much we appreciate everything big and small.

Mel

Today is the last day of Ara-C for 2 weeks. She will have LPs done the next two weeks with Methotrexate injected directly into her spinal fluid. This luckily does not seem to have any side effects (that we can see anyway). Next week she will have PEG (made from E-coli) injections into her thighs (which is very painful and upsetting) but they should be able to do it while she is out with her procedure. She will also have Vincristine the next two weeks. The worst part about this drug is the neurological side effects. Kennedy suffers from needle prick sensations that she feels she needs to itch. Benadryl is the best way to combat this but then she is sleepy/groggy. She also must continue the oral meds through Tuesday. She absolutely hates them and each time it is a fight. We have taken to administering them while she is sleepy for less of a battle.

Kennedy’s platelets are high, her WBC is low (making her neutropenic) and her RBC is right on the border. As pale as she is this morning, I expect her to need a blood transfusion. She has been riding the fence on this one all week. Now with a few more days of Ara-C I won’t be surprised. The good news is that she will perk up for a few days before the next dose of chemo.

Kennedy ran a temp of 102.5 the other night and we were worried we would be readmitted, especially after she vomited. Dr. Olson and Dr. Norwood believe that this is a pattern and is resulting from the Ara-C. Because she would be in the next morning and was showing no signs of distress, they allowed us to giver her Tylenol and stay home. Of course, they are also giving her doses of strong, broad-spectrum antibiotics as a precaution. This was probably in large part to just having her hospitalized for 6 days with no origin for her fever. On Wednesday, Candlelighters (a support organization for kids with cancer and their families) brought us lunch in the clinic. Kennedy has had a hard time eating this last couple of weeks and has lost the weight she gained back. Either nothing sounds good, or we get her what she wants and after a few bites she realizes it’s not as good as she hoped. We knew this would happen but it still worries me a lot. I even took her to DQ yesterday for chicken strips with ranch and ice cream. She ate 2-3 bites of the chicken and refused the ice cream all together. It is hard to have her on a high calorie diet when she won’t eat anything. Mom and I went grocery shopping last night hoping to find stuff she would eat.

There will be a Spaghetti feed at the Moose Lodge in Portland on July 16th (I will get back with all the details) and a Carwash/Plant sale at Platt Electic in Gresham on July 30. We sure hope everyone can join us. If Kennedy is doing well we plan to have her at both events.

I want friends and family to know that I do appreciate the phone calls and e-mails very much. I want everyone to know that I still love to talk about things other than Kennedy’s cancer and would enjoy hearing the going ons of your families and your kiddos antics. While we are dealing with Kennedy’s diagnosis, we are also dealing with the everyday stuff like Austin’s new front teeth (after 5 years!!!), Keith working like crazy, plans for a late summer campout, the Molalla Buckeroo, yardwork, bills, discipline issues, my research project, discipline/tempertantrums and I would love to hear about yours.

Love and healthfull blessings,
Mel

We were able to come home last night 🙂 As mysteriously as the fever appeared, it disappeared. Dr. Olson wanted us to wait for a few hours after Kennedy had her Ara-C (chemo med) to see if she would develop a fever before sending us home. Kennedy felt so good she wanted me to call someone from Child Life to come and play games with her. What a change from the previous few days. It amazes me how she can become sick or well literally overnight.

Today, she went to the clinic and had another dose of Ara-C and blood drawn. Most of her counts look good but her WBC is low making her neutropenic (weak immune system). This means that we are avoiding large crowds and Kennedy is wearing a mask when we do go out (like to the hospital clinic). Candlelighters was having a lunch for cancer kids and their families so that was a nice treat and really helped with expenses. Also, Austin got to go with us. Everyone has been looking forward to finally meeting him. Kennedy was very proud of her big brother and she actually wanted to play in the playroom with him today. She will be going back tomorrow and Friday for more Ara-C. They moved us to starting on Tuesday so that we wouldn’t have to come in on Saturdays, therefore allowing us to have more family time on the days Keith has off.

Also, Make-A-Wish contacted us to set up a time to meet with Kennedy about her wish. I decided to talk with her about it ahead of time so she wouldn’t wish for something like lunch at Chuck E Cheese’s. She has decided that she would like to go to Disneyland and meet the Disney Princesses. This came as no real shock to anyone. We are hoping to go the week of her birthday (October) when it is not peak season and I am going to see if they can arrange a birthday lunch for her with the princesses. She is so excited. I will keep everyone updated.

I have more pictures from this hospital stay but I still need to download them to our computer.

Here’s to healthy days!

Melenie

Well, we are still here and it doesn’t look like we are going home tomorrow. There are two main criterias for going home: 1) no bacterial growth in her blood cultures for 48 hours and 2) no fever for 24 hours. She has not yet had any bacterial growth in her cultures, but she can not seem to manage her fevers. She maintains a low grade fever around 100.0 but randomly spikes at 103. Within the last 30 minutes, her fever hit 104.5 so it is a safe bet that she will be here until at least Monday. On top of this, she has not eaten in 48 hours or drank anything in 24 hours. They are keeping her well hydrated with fluids but this does little to ease my worry. We just tried to give her Tylenol and she began to vomit so we may be back to the ice packs by 9:00 pm. She has averaged 3 spikes in temperature over the last few days and Dr. Norwood was insistent that they have to stop for 24 hours to go home. I agree with him, after all I would not want to go home only to return in a few hours, but I’m feeling caged too. Last night when Keith got here he strongly encouraged me to get out of the room and even leave the hospital. I went to Fred Meyer’s but when I’m away I find it difficult to really relax and enjoy the moment. I found myself looking at the clock and trying to rush to get back. One of the difficult things for me has been not having any time to myself anymore. I want to be with my children and am devoting my time to them, but I’m already feeling a sense of losing myself in this and it scares me. I know that it is vital to my well-being to nurture myself but actually doing it is very difficult.

Austin was supposed to come and spend yesterday with Kennedy and I but after being here a few hours he was also sick. He recovered quickly and within 24 hours was back to his old self and eating everything. Dr. Norwood believes they may have the same bug but because Kennedy’s defenses are down she can’t seem to fight it off. Even with heavy doses of broad spectrum antibiotics it continues to maintain a hold on her.

Love your babies and continue to pray for healing for ours.

Mel

So goes the roller coaster we call Kennedy’s Leukemia. Remember my last posting that things were just great and wonderful-well, things are still good, we just have a few set backs.

Kennedy started consolidation yesterday which meant a very long day for us. We had to be at the Day Treatment Center (DTC) at 8:30 for blood draws. She had a lumbar puncture at 11:30 then more fluid, chemo drugs, more fluid and a dose of a drug that makes her kidneys function very effectively. We were finally able to leave at 5:30. After arriving home, she developed a fever which meant a phone call to the doctor and a return to the clinic first thing in the morning. A low-grade (100 degree) fever is expected with Ara-C but hers was hovering around 102.5 degrees. There are two possible explanations: a possible viral or bacterial infection she picked up before her chemo or Ara-C can sometimes cause bacterial blood infections. Either way she gets several days of high dose, broad spectrum antibiotics and a hospital stay. They are doing a blood culture and are watching her carefully. One of the antibiotics gave her “red man syndrome” which caused her body to look very sunburnt. They are now dosing it over a greater amount of time and giving her benadryl so hopefully that will help. They are planning for her to go home either Saturday or Sunday but we will see. Next week she has the same treatment so we could be here then too. Of course she is getting spoiled again and doesn’t necessarily mind being here.

We did find out Wednesday that although Kennedy has less than 1% MRD, she is classified as a Slow Early Responder (SER) because she has between 0.1 and 1% MRD. This means 4 more months of intensive therapy and radiation to her brain. Unlike with a tumor, the radiation will be directed at her brain as a whole. We have been reassured that it is a very low dose but that does little to ease my fears about the side effects. This group with MRD is still seeing a more frequent relapse than those with less than 0.1 and the study is looking at the idea that an increase in intensive chemo and radiation will give the SER kids the same cure rates as Rapid Early Responders (RER). This was very upsetting to me and it was almost like hearing the news anew. I have had the urge to scream and beat my fists against something all day but have resisted. I’m afraid I will look like some crazy woman. I do realize that it can’t be healthy to keep it inside but for those of you who know me well, losing control is not really an option. I just long to run back in time to a place where Kennedy was healthy and happy.

Please, hold your children extra tight tonight and thank God that they are here with you.

Melenie