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

Kennedy was able to go to the Grand Floral Parade on Saturday. She had a wonderful time with Grammie, Mom, Austin, Papa, Uncle Bob, Auntie Sue, Ashley and Troy. She was so excited to see Holly, Heather and Sammi marching with the Centennial High School band (Go Eagles!)and was thrilled that they waived to her. It rained on us but the kids got umbrella hats so they didn’t mind. It did help that it wasn’t cold outside. Her spirits were lifted by all the activity and being out in the fresh air certainly helped. She was wiped out though and slept on the way home and most of the afternoon.

On Sunday, Uncle Mark, Aunt Judy, Chelsea and Joseph came to visit and brought a wonderful book that Joseph’s class created for Kennedy. She loved it and has enjoyed looking at the pictures.

I spoke with the clinic this morning and Kennedy had less than 1RD so she is officially in remission and is moving on to the consolidation phase in her treatment. This means daily medication for the first two weeks of each “month” and more frequent visits to the clinic for treatment. For the next two weeks she has chemo on Wed, Thurs, Fri and Sat then I believe she has two weeks of just Wed then back to the four day a week schedule for another two weeks. This is to kill any remaining leukemia cells before we move to interim maintenance which keeps leukemia from coming back. IM is the 2 month phase in which Kennedy gets the most intensive treatment that requires hospitalization-but we don’t yet need to worry about that! 🙂 Her port is healing but she is not looking forward to having it accessed tomorrow because it is bruised and very tender. For the next 4 weeks she also is requiring lumbar punctures and Methotrexate into her spinal fluid. This last time went very well and they believe she will continue to do well. It is unclear when or if she will need another bone marrow aspiration.

Austin’s last day of school is Thursday and he can’t wait. He is looking forward to spending time with his friends this summer and playing. He also wants to spend mornings sleeping in instead of rising early for school.

Well, I have to run-Kennedy is ready for lunch. One thing that has been weird is her eating habits. She now hates foods she loved and loves foods she hated. She eats eggs like crazy and grilled cheese sandwiches and hates pb and j and chips with ranch (two of her favorite foods).

Thank you to Christy, Amy and Aunt Judy for food-this is such a big help.

Blessings,
Mel

Kennedy is doing very well and recovering from her surgery yesterday. She is having very little pain and has not even required Tylenol to manage it. The only time she is hurting is when it gets touched which we are being careful not to do. She is having a small amount of pain from her bone marrow aspiration and lumbar puncture but nowhere near the problems we have had in the past. Her surgeon, Dr. Salin, said everything went well with no complications. Dr. Olson, the oncologist, agreed that things were looking good and expects her to begin the consolidation phase next week (of course, it will depend on whether MRD is found but she does not expect that it will). I know that all of your prayers have made the difference in her remission and surgery. Thank you everyone for keeping Kennedy in your thoughts.

She is nervous about how her port will be accessed now that her straw is gone but she is looking forward to playing in the pool and taking a long bath. I told her that I will be putting special numbing cream on before we go and that although they will use a needle, it won’t be “pokey” it will just feel like they are pressing on it. The first month it will be tender but it gets better after that. I was surprised at how big the bump was. I thought it would be like a mosquito bite but it is more like the size of a silver dollar. Of course it is swollen but still not visible under her clothes. This will be nice when she does go to school. One of her biggest concerns is that she will not look like other kids.

As I was about to update this journal, Kennedy’s new hair arrived. She was so excited! It was just like Christmas! She tried it on and could wear it with the hair she has left (because it is thin). It’s longer than we thought it would be (down to the middle of her back) and she loves it 🙂 It is almost identical to the shade of hair she has so that was fun. She just can’t get over how long it is. She just told me that when her hair grows back she wants it to be long.

Thank you again for all of your prayers and heartfelt wishes. We love you all and hope to see you soon.

Mel

Kennedy had a pre-op lab draw this morning which brought back some good news. Now that her bone marrow is free of Leukemia, it is producing its own platelets and healthy white blood cells. Her platelet count was in the normal range and while her white blood cells were still low, they are recovering. Her ANC, her immunity wbc, were at 260; normal is over 1500 but this is increasing substantially from where she has been. Her red blood cells were critically low so she received a transfusion today to prepare her for tomorrow. Dr. Chu said that when the bone marrow begins to produce healthy cells it always produces platelets and wbc first so the fact that her rbc were low is normal and expected. Everything looks good for tomorrow’s surgery. Both Dr. Chu and Dr. Norwood believe that the joining of ch 9 to ch 19 are insignificant to Kennedy’s treatment but are waiting for a final report back from the Children’s Oncology Group. There were some changes made to her treatment plan by the research organization but they are minor-they needed me to read the changes and initial that I understood them so they could continue her treatment plan. Dr. Chu said that Kennedy was the first child they had placed on this particular program so they are very interested in any side effects and her response to treatment. She was chosen to take part in the DH program which has the strongest and highest levels of treatment but also the most severe and long term side effects. I guess there has to be a trade off somewhere.

Kennedy is feeling anxious about tomorrow. She knows that her “straw” will be coming out and a port will be placed in her chest. She has asked to keep her straw (Pick line) because it is familiar and safe but we have been telling her about all the wonderful things she will get to do now that she will have a port such as swimming, taking a bath without worrying about her bandages getting wet, no bandage changes, etc. She is not convinced. Of course, the whole idea of “going to sleep” and that sense of losing control is probably most upsetting to her. Please pray for her during her surgery (1:00 pm) and during her recovery. She will also be having a bone marrow aspiration and lumbar puncture with Methotrexate directly into her spinal fluid. The last 2 times she has had a lumbar puncture, she has had a terrible reaction and a lot of pain.

She is still waiting for her hair to arrive via UPS. The doctors and nurses are amazed that she has so much of her hair left. It is getting patchy but because it is chin length, we have been able to conceal it well. They have said that most kids are bald by this stage. They assured us that she will lose her hair during the consolidation phase though. Of course, we still don’t know if we are doing two more weeks of induction or moving to consolidation. We did find out though that during the 2 months of consolidation, Kennedy will be going to Emanuel every Wednesday, Thursday, Friday and Saturday for chemo in addition to taking daily medication. That ought to be a blast 🙁

Austin is doing better-of course school will be out next week. The hospital Child Life staff allowed us to borrow a video titled, “Why, Charlie Brown, Why?” about Linus’ friend Janet who has Leukemia. It generated a lot of discussion and compassion for our family and helped the kids to understand why Austin shaved his head. Now his best friend, Skyler, and a few other kids want to shave their heads to support Austin and Kennedy. There are wonderful things about going to a small school. Baseball is over 🙂 and things are slowing down for Austin. He is looking forward to playing with his friends this summer, riding his bike, and going to work with his dad.

I can’t say enough wonderful things about Keith. He has really been my rock through all of this. When I became overwhelmed he stepped up and made the decisions and coordinated Austin’s schedule to ensure that things remained normal. Without him and my mom, I would have been lost. I have been amazed and delighted by Keith’s leadership and absolutely in awe of his sensitivity and devotion to Kennedy. He has truly honored his family with his presence.

One quick note to Christy, thank you for allowing Kennedy and I to use your unpadded sling. Between the sling (which is so easy to use) and the Baby Bundler, Kennedy and I have been set and both have made our life in public so much easier! Thank you everyone for all of your help, prayers and wonderful messages.

Keep praying and loving Kennedy-God is blessing us beyond our dreams through this with guidance, direction and overwhelming love.

Melenie

I have been trying to update this all week but ran into some problems after they made changes to the caringbridge program. Everything seems to be fine now though 🙂

Kennedy is doing remarkably well this week. On Wednesday her ANC (immune fighting cells) were at 162. 1000 is what we are shooting for but we would be happy to have any over 500. This was not great but it shows that her body is trying to recover itself now that the leukemia cells are gone-unfortunately, her chemo does not distinguish between good and bad and kills all the cells. Her platelets were at 49 (keep in mind that 100 is normal). Dr. Norwood had something he was going to check into-it could mean nothing-but her chromosome 9 has attached itself to chromosome 19. He said that often times with leukemia ch 1 will attach to ch 19. He doesn’t remember this combination as being good or bad exactly but he wanted to do some more reading. As of Day 15 in her treatment, when looking at 1/10,000 cells she is leukemia free and in remission. On Day 29, June 8 although it is going to be done now on June 9 or Day 30, they will send her labs to the research institute where they will exam them at 1/1,000,000 and they will look for any MRD (minimal residual disease) or any possible leukemia cells; if they find less than 1% then she moves to the consolidation phase, if they find more than 1% then she will have 2 more weeks of induction phase which includes 2 more weeks of Dexamethasone steroids. We will know either Friday or Monday following her bone marrow aspiration on June 9.

Kennedy will be having surgery on Thursday, June 9th to have a Port catheter inserted into her chest, her Pick line removed from her arm, bone marrow aspiration and a lumbar puncture with Methotrexate in her spinal fluid. She has a lab work up at the Oncologists’ office on Wednesday morning because they expect her to need at least a platelet transfusion and possibly a red blood transfusion. Because her platelets are expected to drop, and because she is having a catheter inserted into a main vein near her heart, they want to be absolutely certain she will have the ability to clot her blood. On Thursday morning, we will have our pre-op consultation and she has surgery at 1:00 pm. Depending on who you talk to depends on whether or not she will be staying the night-we’ll see. Everything is moving very quickly with her surgery because this is our best opportunity for the next couple of months. I have no idea what her treatment looks like after next week as it will depend on the genetic labs that have not come back (whether this was a DNA mutation or a blood cell mutation) and her MRD both could change the course of the treatment.

Her hair has become pretty thin and when we went to the National Cancer Survivors Day Celebration at Emanuel, she refused to have her picture taken. She is handling it well though and is looking forward to the UPS man bringing her “new hair” this week. I took some fun pictures of her in day treatment playing while getting her chemo so I will post those soon.

Austin finished baseball and had a wonderful time with Kim, Darren and Skyler Vess at the Arthur Academy carnival. He is doing better and looking forward to summer. Please continue to keep him in your prayers as this is very difficult for him too.

Thank you everyone for your thoughtful e-mails and posts. Thank you, Terrie, for the BabyBundler to carry Kennedy in. This certainly helps for her comfort and to keep strangers from feeling like they can just invade her personal space and touch her. I’m having a very hard time with this and by carrying her we have been able to almost eliminate this. I’m also trying to remember that touch is some people’s love language and while I am trying to protect Kennedy, they are trying to show their love and concern for her.

Mel