Courage for Kennedy – Journal


May 31, 2005

Category: Treatment – Melenie 12:51 am

We received some very good news today-Kennedy is in remission! At her last aspiration on Day 15 of treatment, there were no more active leukemia cells! They are not calling her an early or slow responder because she went into remission in the middle of her induction period. Now it becomes a wait and see as far as making adjustments to her treatment. I’m not sure if they will decide to continue with standard treatment or boost certain phases into higher doses between now and maintenance. I will know more tomorrow after her clinic visit. She is very happy though not to have any back pokes (spinal taps or bone marrow aspirations) tomorrow. She will still have a blood draw and chemotherapy but she will have no muscle soreness. When I was on the phone with the nurse, I mentioned that Kennedy is complaining of having the sensation that needles are poking out of her skin and if she itches them, she can push them back in. The nurse told us to mention it to Dr. Norwood tomorrow but she believe that it could be the Vincristine (a chemo drug) causing neurological side effects. Hmmm…not encouraging.

We applied for Social Security disability benefits for Kennedy today-or we actually had our interview. We’ll see what happens with that. It probably wouldn’t be a large amount of money, but it could help us to get through the next few years.

Everyone is doing well. As you could see by the pictures, most of the family has shaved their head while Kennedy goes through this difficult phase of losing her hair. She seems to accept that fact that it is happening but I think she thought it would all fall out at once so it seems to be taking a long time. Everything is covered in Kennedy’s hair: the couch, our clothes, her bed, her clothes, chairs and anyone who holds her. She had a lot of hair to begin with, it was just very fine, so while we can tell that she has lost a lot of hair, because it is not “patchy” it is hard for others to tell.

This weekend my father-in-law and his family were in town and my sister, her husband and kids came over for a BBQ. Kennedy loved playing with her cousin Emily and realized how very much she missed her. It was hard for her to pick up because she knew that meant that they were leaving. I will be happy when her ANC numbers come up and she can spend time with the people she loves.

Blessings,
Mel

May 28, 2005

Category: General – Melenie 12:09 am

Kennedy has done very well since her chemo on Wednesday. With the exception of some muscle ache in her back, she has been pain free and without steroids is returning to her normal self. Yesterday, we had to take Austin to see Dr. Skau and Kennedy was thrilled to be out in the “real world” again. She enjoyed seeing everyone, even though she wouldn’t talk to them at the time, and bragged about the attention the rest of the day. Dr. Skau showed us a hallway to help avoid the most contact with people so that when we come in next time we can keep her as safe as possible. After that, she got to go and see her papa’s and her cousin Jay’s new bald heads. She liked them very much and is looking forward to Daddy and Austin shaving their hair off this weekend. Kennedy’s hair is falling out now and becoming thinner every day. I just run my fingers through it and pull out 10-12 strands at a time. We ordered her hip-hat yesterday and she is looking forward to wearing her “new” hair. When we first looked at the catalog, she wanted 18″ of jet black hair. 🙂 I talked her into 12″ of golden blond; she’s very excited to have long hair without the maintenance.

Kennedy walked up the stairs yesterday. We were very surprised as she has barely had the energy to walk from the couch to the bathroom. And then we bought a new pool and she was able to play in it. We wrapped her arm to protect her “straw” and she had a blast! 🙂 It was so good to see her doing normal kid things again. I attribute her well-being to no steroids, no spinal tap on Wednesday and no chemo directly into her spinal fluid. This week she only has chemo so I am hoping for a good week again. I have some new pictures and will post them soon.

Love and good wishes,
Mel

May 25, 2005

Category: General – Melenie 9:20 pm

Things are good, then bad and then good again. It feels more like a rollercoaster than my life 🙂

Yesterday, Kennedy complained of abdominal pain and was vomiting so I took her to the oncologist’s office and they decided to admit her overnight for observation-especially since she had chemo this morning. Last night went well-she ate everything (hotdogs, cheese pizza, etc.) with no problem. This morning she was mad as could be because she could not eat breakfast before her bone marrow aspiration. When we got to day treatment, she just protested that she would not allow us to do any back pokes. We told her she was welcome to tell Dr. Chu but we could not do anything about it. Luckily, she did not need a lumbar puncture (spinal tap) or Methotrexate (chemo meds) in her spinal fluid. This was a relief to all of us. They had some problems getting bone marrow from her left hip because it was crumbly, so they had to also draw from her right which was much softer. This is probably not good news but I’m holding out hope for remission anyway. Next week she will only have to come in for chemo so we can just go to the Dr.’s office. How nice for her not to be poked in the back again. While we were at the hospital they did x-rays of her abdomen but couldn’t find any explanation for her pain-I’m not sure if that is good or bad. After having her procedure, they gave her Morphine-of course that was when they decided to photograph her for the new family brochure. My perfect 4 year old will be immortalized stoned-every mother’s dream 🙂 It did help with pain and she ate a 1/4 lb. hotdog and a large bag of Doritos. I guess that meant she was not feeling sick to her stomach. When it was time to leave she protested loudly that she wanted to stay the night. I was not surprised as she loves keeping the night nurses on their toes with requests for water, bandaids, potty visits, food, etc. She is home this evening and doing well.

Kennedy finished her steroids yesterday so hopefully she will return to her normal self. She has lost 7 lbs. since she has gotten sick but her Dr. thinks it is muscle mass. Of course, it freaks me out and we spent some time with a dietician today. In addition to increasing her exercise (as tolerable) we will be increasing calories. We were worried that she would gain weight, not lose it. She has not begun to lose her hair although we have had a couple of opportunities to talk about it. I have been assured that it won’t be too much longer.

Thank you all for your encouraging e-mails, cards and messages. We all love you very much and do think of you.

Melenie

May 22, 2005

Category: General – Melenie 11:18 pm

Well, we came home last night under the condition that Kennedy would continue to take her meds and use the bathroom which she has done both. It is amazing to me how much her spirits are uplifted when we walk through the door. She has had no fevers and is back to eating everything in sight. Today is my birthday and I couldn’t have received a better gift than sleeping in my own bed! It is amazing the little things you appreciate after sleeping in a hospital for almost 2 weeks…your own shower, a soft bed, no IV monitors going off, no one interupting your sleep every two hours, homecooked food, etc.

Austin is beginning to understand that Kennedy’s illness has changed our family and that things will not be “normal” for a while. His sister tires easily and requires more attention so she is not the playmate he has known. We have set aside more time for individual attention but it is difficult. Today he went with his dad to see the new Star Wars movie and tomorrow I will take him to the mall to do some shopping for his sister (new hats). He helps out as much as he can and is now the “hand washing police” when visitors come over. He had a wonderful time Friday at a sleepover/birthday party for his friend Skyler and enjoyed being a normal kid.

I know that God has a plan for our family and for Kennedy but some days I am overwhelmed. I pray everyday that He gives me just what I need for that day-sometimes just for the moment. This is the first time ever that I have felt as if I have no control over what is happening or the outcome-a very hard lesson to learn. Please continue to pray for us and know that we love all of you and appreciate everything.

Mel

May 20, 2005

Category: Gratitude – Melenie 1:36 pm

I realized when I came back and read what I wrote that my spelling was horrendous-sorry! Also, while we were at Dr. Skau’s office, it was Dr. Stanton who had sent us to Emanuel.

Ok, the real reason I decided to come back and post another journal…I want to thank everyone for all your wonderful thoughts and prayers for us during this time. While I may not always have a chance to respond to e-mails, I do read them and pass on your love to Kennedy (Nacho and family, Rebecca, Prof. Clark, Prof. Covarrubias, Willard & Kathy, Scott, my aunties I love!, Marleen, Becky, Amy, Christy etc.) Your e-mails and messages on this site help meet my need for support and connection as we walk through this very difficult time. A quick note to the wonderful staff at East Portland Pediatric: you guys are the best! Dr. Stanton, Dr. Sequira and Dr. Skau have all been very supportive and have taken the time to visit with us and Dr. Skau especially who has spent time with us, called us and eased many of my fears during these past 11 days. To all the wonderful nurses and staff…Kennedy loved the masks you got. She was so excited to finally have “cute” masks that actually fit. Her grammie is making her some and between the two she will be set.

Everyone has been so wonderful to us…I can’t thank you enough.

The Duval Family

Category: Treatment – Melenie 10:52 am

Everyday I hope to be able to work on this and it just never seems to happen. We went home on Sunday and Kennedy really perked up and the sight of her toys and familiar surroundings. She had some pain but seemed to manage it well despite her unpredictable personality. She was walking around the house, though not up the stairs, and even wanted to help put the dishes away on Tuesday. Wednesday we returned to Day Treatment at Emanuel and things appeared to be well. Kennedy’s counts were where they expected and she did not even need any transfusions. She was very hungry and moody from not having been able to eat breakfast and devoured her lunch before her chemo. Everything appeared to be good and we left the hospital in time to get her brother.

That afternoon, she began to complain of pain in her back and legs so I gave her some Tylenol with Codeine. After a few hours the pain had increased to a level that was intolerable and her head was pounding. I called her Oncologist and she had us admitted for pain management. After riding for 45 minutes in a car with a very upset and nauseated child, we arrived and went directly to the toddler unit. Her termperature was normal but within an hour it had spiked to 104 degrees, her heartrate was 150 bpm and her blood pressure was low. We found out yesterday that she was going in to shock. Wednesday night was a battle as they tried to manage the fever with Tylenol, the pain with Morphine and the vomiting. They believe she may have had a spinal headache and infection. They started her on large doses of antibiotics and did a blood culture. Yesterday morning she was vomiting blood and was lethargic-it was a debate about whether to send her to Ped ICU. She received a transfusion of platelets and the antibiotics kicked in and by evening she still had an elevated heartrate but her fever was subsiding and her blood pressure was closer to normal. This morning, her temp was 101.5 and her bp was low but they expect her to be doing much better. She is eating today so that is always a good sign and she’s back to being Dr. Pickle and Mr. Bean. They are decreasing her fluids (this was used to bring her bp up) but are giving a whole blood transfusion. This is just such a roller coaster ride-you can’t predict anything.

Other news, her bone marrow biopsy came back yesterday with high levels of Leukemia still in it. This was a huge disappointment and she is now classified as a slow responder increasing her intensive treatment for up to 1 year. I was just devestated and upset but her doctor still believes she will fall into the 99% who are in remission in the first 30 days. Of course, this means another spinal tap, more Methotrexate in the spinal fluid and another bone marrow biopsy on Wednesday. They are sending us home with stronger pain meds that she will take for 12-24 hours after her procedures as a preventative. Dr. Olson reminds us that it is only a set back, not a problem.

Ok, a quick response to how we discovered this. While Kennedy had been tired, had bruises and had decreased her appetite (Kennedy had an ENORMOUS appetite before) we were able to dismiss them because she got up at 5 am, was a typical 4 year old and was coming off a growth spurt we could not dismiss the blood in her urine. On a trip to Newport, I took her to the bathroom and discovered she had urine the color of cranberry juice. I called Dr. Skau’s office and took her there for what I thought was a severe bladder infection. He told us that there was no bacteria in her urine and began checking her out and asking questions. They all seemed easy enough to explain away until he said her liver and spleen were enlarged along with her lymph nodes. He mentioned a couple of things and said she needed to be admitted to Emanuel immediately. Sonja drove us and within 30 minutes of arriving Keith was here. Six or seven doctors came in and examined her but I should have known something was up when we were only in the ER waiting room 5 minutes despite the fact that it was packed with kids. They did a CBC and before midnight they confirmed that it was a type of Leukemia. We did not find out until the next day that it was Acute Lymphoblastic Leukemia Pre-B High Risk (and now slow response). Her WBC were dangerously high 200K (50K made her high risk) and we needed to make a decision immediately about whether to stay here not knowing if we would qualify for OHP or fly to St. Jude’s in Memphis. She could not be sent to St. Jude’s if we started treatment and she needed it now. We decided to stay here knowing that if we went we would have to relocate and have no family or friends support for 3 years +. We opted for the research treatment and still believe it is the best choice. She has a great team of doctors and staff here so we know that it was best.

I hope to write soon-we’ll see how things go! Please continue to pray-it’s a long and difficult road for all of us.

Mel

May 15, 2005

Category: Treatment – Melenie 11:07 am

We had good news today after having a very hard day yesterday. Kennedy’s numbers look well enough for her to go home! We will still wait for her numbers after her 4:00 pm blood draw but things look very good. She is eating Orange Chicken literally by the pound (2 lbs. in a day!) and last night she was acting like the Kennedy we all know and love.

Yesterday, she had an injection of chemo and they gave her Fentenyl (a narcotic) to help her remain calm but she had an allergic reaction and began to become hysterical and was covered in a rash. Luckily, her nurse had chased it with Benadryl so within 30 minutes she was calm and almost rash free. It is very difficult to see our little baby act like someone we don’t know. We were warned that the steroids would make her aggitated and they were not kidding, we just weren’t prepared.

This is a quick note so I will try and find time later to answer the questions we have been getting and give more detailed information.

For now, please keep us in your thoughts and prayers.

Melenie

May 14, 2005

Category: Treatment – Melenie 12:49 am

After sending out an e-mail, I thought it might be easier for everyone to stay updated if we had a central location so this seemed like a wonderful place to start.

Kennedy is extremely tired today-she was only awake about 5-6 hours total. This was no surprise after 2 days of raging tempertantrums that seemed to come to a head yesterday afternoon. This was expected with her receiving steroids but I was surprised by the extent of her anger. Everything and everyone was irritating to her and she was convinced that if I would let her in her wagon she would get out of here herself! By evening she was better and enjoyed visiting. We are warning those who want to spend time with her that it is not personal. We have begun to set clear boundaries again about what is acceptable and what is not. This has actually helped.

She is responding well to chemo and her white blood count has dropped from 119K yesterday morning to 25K today. Because originally her count was 200K this is all wonderful news. To give you an idea of what that means, a normal person has a WBC of 10K-12K. 200K was extremely high and very dangerous so this is all good news. Her platelets are continuing to drop. These aid her in blood clotting so she bruises easily and new purple spots have begun to appear. Upon admission her’s were at 13-normal is over 100. Even with a platelet transfusion she has never been above 96 and this morning they were at 17-the hope is that as the Leukemia cells are taken out, the bone marrow will on its own begin to create platelets. This hasn’t happened yet and because they continue to decrease by half daily, tomorrow she will need another transfusion. Today we were given her discharge meds and I only hope I can remember to give what at what time. We also went over all of things to watch for-this was overwhelming because after we got through it they said if I just didn’t feel something was right I should call her Oncologist. Boy, that could be frequent! For those of you who know how paranoid I am you are laughing! 🙂

We are expected to go home Sunday and she is doing remarkably well but is still very high risk. Her official diagnosis is: Acute Lymphoblastic Leukemia Pre-B High-Risk. While it is very aggressive as high risk, she is responding equally fast.

Please keep us in your prayers-a note of good news…she qualified for OHP and will be receiving insurance at least through the most expensive portion.

I hope to have more time tomorrow to give some details as to how this was discovered and what our treatment looks like because these are the most common questions. Also, more information will be coming regarding fundraising-it is well underway and there will be opportunities for those of you who want to help.

Good morning and God bless,
Melenie