Keeping Kolby

Here is Kolby with her grandma and dad waiting for the doctor to arrive. Kolby being examined by Dr. Cecilia Fu Dr. Fu and Kolby at the end of the appointment. Kolby and her grandparents, Darrell and Diane Thornton We woke up early today to make to our way to the UCLA Medical Center for an 8:00 appointment. The campus of UCLA is huge and you could easily get lost if you didn’t know where you were going. The hotel we are staying at is very nice. It was remodeled and transformed from an old school dormitory into a modern contemporary hotel. The nice thing is that it is a couple blocks from where we needed to go. When we arrived to the registration area…it felt like we just became a number in the mass of people there for a “cattle call”. That feeling immediately changes as soon as get into your room. The staff and doctors there are incredibly friendly and you feel like they really care about you. Countless people popped in, to introduce themselves and offer their individual services. It w...

Today was a pretty significant day in Kolby’s treatment. Last week her blood count numbers were really low and for treatment she was either going to have chemotherapy as scheduled or a blood transfusion if her blood count numbers hadn’t risen significantly enough. Dana does an amazing job getting Kolby ready for each one of her treatments. Not only does she have to get a sleepy teenager up and ready…she also has to gather up all of Kolby’s meds and take them to each appointment. There is also a special numbing cream that must be applied to Kolby’s port at least an hour before her appointment. She nurses Kolby through her day with a heart as large as a city block. After drawing blood to check her numbers we had an unexpected response from Kolby’s physician Dr. Rashid. Her blood count numbers were too low for a chemotherapy treatment, but they were rebounding to the point that her doctor felt like a blood transfusion would carry potential side effects that would not be worth the potentia...

Today Kolby wanted to get out of the house and do a few things before her big chemo day tomorrow. So, we met Kylie and Jeff and had lunch at Panera. Kylie, Kolby's sister is due any day! Then Kolby will be an aunt, and she can hardly wait. Kolby also wanted to practice driving in our neighborhood. She is driving her truck that used to be Kylie's and it is the truck that I won on The Price Is Right almost 5 years ago. She loves it and she is so excited that she has a car to drive. (Us too!) When she is feeling down, all we have to do is ask her if she wants to practice driving around the block. She's getting pretty good at driving too. Then we went and visited my sister and her new little daughter, Austin. We had a long day, but it was so nice for Kolby to get out for a while. She goes in tomorrow for another chemo treatment as long as her blood levels are high. If not, she will have to have a blood transfusion. The doctor also called and she said we will go over all her ...

Today was boring. All I did was lay on the couch and rest. All my friends are either working or up at girls camp. I have felt pretty tired today so it's been nice to lay around. I am going to be 15 1/2 at the end of the month so I have been busy reading the booklet studying for the written driving test. I also found an online practice test. I think I will have my dad help me with it. I am feeling pretty good today. My chest was hurting this morning, but my mom gave me my meds and I felt better. Not looking forward to Thursday. It's Chemo day. We also leave Thursday afternoon to to go UCLA to see an oncologist Friday morning. I hope I feel good and up to traveling. We still haven't heard the results from my bone scan.

Kolby was a little lazy this morning. She woke up around 11:00. I heard her in the kitchen make her breakfast (which usually I do for her). She watched some television, then went in her room and gathered her 3 weeks worth of laundry and separated it. Brought it in the laundry room and started doing laundry. (I did tell her I would finish it for her, which she greatly appreciated). Then she went back in her room, sorted through all her gifts she had received in the hospital and cleaned her room. She did all this without me telling her to. (I love it when she feels good! :o) Then she showered, and her friend Gabby invited her over to hang out before Gabby goes to girls camp this week. So cheers to another great day of Kolby feeling good enough to get out and act like a normal teenager! YAY!!!

Kolby had a really nice weekend. She even went to church on Sunday. She didn't stay the full 3 hours but she did stay after sacrament and visited for a while. That's a great step because she had always wanted to leave a little early. She is starting to feel more comfortable around people and not so overwhelmed. She is still pretty emotional about her condition, especially when people talk to her about it. But she is getting better and better, and I am so proud of her. On Friday, late in the afternoon the nurse called from the doctor's office to tell us they had received results from one of her scans. She told us that Kolby's lymphoids were back to normal size, and that Dr. Rashid was thrilled with the results. However, the nurse told us that she has liquid on the bottom of her lungs. So, she gave us an antibiotic and told us to watch her close. Any signs of coughing or fever we need to contact the doctor. I wasn't sure if it meant that if the lymphoids were back to ...

Today Kolby went in for her third round of scans. In this picture Kolby is being injected with a radioactive tracer. The radiopharmaceutical injected into Kolby for her PET scan is called FDG, which stands for “fluoro-deoxy-glucose”. This is a very low concentrated solution of glucose in water. The glucose, or sugar molecules, have a radioactive isotope of fluorine attached to them which allows the scanner to “see” where the sugar is being used (metabolized) in your body. It came in a special lead container and Kolby asked why it was in there. He explained to her how dangerous radiation is to the skin and it is a way to protect us. We both looked at each other in amazement, and commented on how it was going into her veins. Crazy!!! They inject the radioactive isotope into her veins before her PET scan, and this makes all the "hot spots" (cancer cells) light up so they can measure the progress of the chemo. In the other picture Kolby has to drink this nasty contrasting dye mat...

Kolby went to her weekly doctor's appointment today and as soon as we got there Dr. Kline came right out in the waiting room and told Kolby that there was a 15 year old girl who was just diagnosed with cancer and she was having a really really hard time. He asked Kolby if she would go back and talk to her. Kolby met McKenzie. She is such a darling girl. McKenzie was just diagnosed with brain cancer two weeks ago. She was very quiet and we could tell that she was scared and uncomfortable. She is just beginning to lose her hair and Kolby chatted with her about her experience. Kolby told her about the Wig Cottage and a few web sites with hat hair. McKenzie seemed a little uplifted. Kolby also told her all about her experiences the first few cycles and how much better it does get. Kolby also learned that McKenzie has to have chemo and radiation everyday for 30 days and it really made Kolby appreciate her 21 day cycle. The two were able to get strength from one another. I was really pro...

The last few days have been wonderful for Kolby. She has been able to minimize her pain and nausea medicine and feel pretty normal. She hung out with her friend Gabby and made jewelry (thanks to the MCCallum family :o). She also hung out with her sisters and watched movies, made bracelets, and swam in the pool. Today Kristi treated Kolby to some fun and she took her to the Artful Potter and painted cups. Kolby painted a cute cup and saucer along with Kristi. Kolby still has to be careful going out into public. So, we choose public places that are not very crowded. John told Kristi and I to take Kolby out of the house and off the couch when she is feeling good so she can try to have a little fun this summer, instead of just laying around the house. Kolby is starting to get a little depressed, especially in the evenings. Especially last night when she was talking about how good she feels right now, and come next Wednesday she will have to have chemo again and all the meds for 6 days. She...

I haven't updated Kolby's blog the last couple days because Kolby has felt so good and was back to her old self. She even hung out with her friend Gabby Newman the last couple days. When Kolby hangs out with her friends her attitude is so much better and she acts like her old self. John and I have also been able to sigh a little relief these last few days. I cannot express enough how wonderful it is for Kolby to feel good. She even mentioned to us yesterday that it will be so nice this time next summer, and feeling wonderful all the time. She really misses feeling that way on a constant basis. Today she woke up this morning with a slight fever. 99.1 As long as she doesn't reach 100 then she can stay home. Once her temp reaches 100 we have to take her to the emergency room. She also woke up not feeling and looking too well. Her tummy hurts and she is upset and just wants to stay in bed. She really isn't complaining to much, but she does want John or I by her ...

Brinley Truman, an eight year old girl in our ward and a dear friend of our family over heard her parents discussing Kolby and their desire to make a donation to "Keeping Kolby." Brinley asked her parents, Tom and Taralee, what they were talking about and Taralee explained to Brinley that they were going to donate money to the Cramptons because they wanted to show them that they love them and also because all the medicines and procedures that Kolby has to have cost a lot of money. Brinley told her parents that she wanted to give her money too. She went into their kitchen, climbed on the counter and got her money off the top of the fridge. When she got down she handed her mom 5 one dollar bills, 4 nickles, and 7 pennies. Her mom told her that she didn't have to give her money and that they would donate money as a family and Brinley said, "No, I want to use this!" Taralee told her that she should keep her money since she doesn't get money very often and they d...

These are the instruments and syringes that are used to access Kolby's port. I actually watched the whole process this time and I had to take a picture. It is like a huge tack that the nurses just stick into her skin and into her port. Honestly, it freaks me out, but she doesn't even feel it, thanks to the numbing cream. The port then can be left in for any additional IV's or medicine. This time they took it right out after they took her blood. Kolby didn't have to have chemo today. Which we were really thankful. It has been a rough last 7 days. Kolby lost another 2 pounds this week. Her mouth and throat once again have sores and blisters in them. This is very painful, but at least she doesn't have to take steroids and chemo pills for 15 days. Hopefully in the next couple days Kolby will start to feel more like Kolby until the next round. It is a vicious cycle, and honestly, I am going to dread the next round. Now that Kolby realizes the cycle, it isn't going ...

No more meds after today for 15 days. Yay! Today Kolby mostly slept. When she did wake up up she felt nauseous and didn't feel very well at all. She does not have that much energy and she is very, very tired. Kolby is looking forward to the next two weeks with no required meds. It will be nice for Kolby to feel normal again for a little while. She definitely needs a break emotionally and physically. This disease is very draining and depressing, not only for Kolby but for her whole family. We try to stay as positive as we can, but it is still very difficult at times. It is very difficult and draining to watch a love one suffer so much. Kolby's blog background was changed (thanks to Taralee Truman! Thank you!) today to accommodate a third column for the t-shirt pictures. Remember, anyone who made a donation and received a t-shirt please take a picture and email it to my mom at dmcjpc@gmail.com I want you to be apart of my blog and my journey to recovery. Thank you!!! Also, anonym...

As a family we are struggling hard to find the right words to express our deep heartfelt appreciation for you!! You have truly done wonderful things for us. Flowers, food, calls, visits, gifts, donations, emails, all favors received, (and surely we receive many) and prayers for Kolby and our family. We so greatly appreciate the thought behind every act of kindness you have done!!! Kolby’s Illness has been a burden…but your actions have really lightened the load. For that especially, from the bottom of our hearts…we want to tell you of our gratefulness for you. This time has been difficult for us, but knowing we have the support of people like you truly helps. Please know, that your kind gestures have not gone unnoticed or unappreciated. Every single kind deed that you do opens the floodgates of emotions in our hearts and our eyes are swimming in tears as we feel overwhelmed by the love that you have shown us. We are thankful for kindnesses we cannot measure and for gifts we cannot appr...

Kolby pretty much just slept away the weekend. She wakes up long enough to eat, take her meds and visit for a little while. I did catch her looking on facebook which makes me sad in a way. She looks at all her friends pics and comments. She doesn't say anything, I guess it's just a mom thing. I am probably sadder for her these days. I am sure she wishes she was out hanging with her friends, but she hasn't complained lately. Right now she just wants to feel better. She can hardly wait till the 6 days of the new meds are over. Today is the 5th day. We have figured out a great mixture of her meds to control her pain and nausea. (Hope I am not jinxing it!) Each time she wakes up she wants us to start over the movie "You Got Mail." Then after a few minutes she goes back to sleep. We had a few things to attend this weekend, a bridal shower for Sarah Nielson, a BBQ at the Burrs, and church. She wasn't feeling well enough to attend any of them. John stayed home with ...

After a rough morning and lots of meds Kolby ended up sleeping most of the day. She woke up a few times and stayed awake for a while and overall it ended up being a good day. Kolby does not like sleeping away the day but when she is so violently sick and in pain, I would rather her be comfortable and sleep off the sickness. The Whipples came over and brought her some yummy custard ice cream. Jeff and Kylie came over and John BBQ Carne Asada and Kolby made herself a delicious burrito...she didn't eat it all, but she was able to eat and keep it down. She just finished taking the last of her 33 pills for the day and now she is sleeping beauty!!!

Well, the sickness started at 3:00 a.m. Nausea, stomach ache, body ache, head ache, and legs hurt. Now the legs hurting is new. She finally fell back to sleep a couple hours later but then woke up to throwing up and aching all over. I couldn't believe how fast this came on. I was hoping for Kolby that she would have another great day. Her legs hurting her worried me so I called the doctor and they said to double her douse of morphine. So I did, and it relaxed her and she started feeling better. She doesn't like taking medication, but I would rather her sleep off these next few days and sleep right through the sickness, pain and nausea. She wanted to go for a long drive so we did. We went and picked up Kylie for the day. Then we rented You got Mail and some other "comfort" movies to watch, relax and veg like broccoli!

Today was a great day! The night before Kolby had her chemo treatment she asked her dad to give her a father's blessing. It was a beautiful blessing , asking the Lord to watch over her and give her the strength spiritually as well as physically to handle the effects of the chemo, and that the side effects would not be as hard on her. We sure are thankful for the power of prayer and for father's blessings. Today Kolby had no side effects from the chemo treatment yesterday. We know the effects will probably still come, but we know that the Lord will bless and watch over Kolby. Kolby slept most of the morning after taking her first round of meds. Sleep is good. Later that afternoon Kolby decided to go out to dinner with my friends and I. I was thrilled that she went. Becca her friend went with her mom, and she was able to visit with her while all of us "moms" sat around and visited. Kolby was also able to enjoy the evening with some dear friends. Dallin and Rachel Jenkin...

Here is Kolby getting her vital signs. Kolby is up to 92 pounds. She had a weight gain of 4 pounds in the last two weeks. That's great! She was able to eat normal and keep it down. She was also off chemo and steroids for the last two weeks. Overall she felt so much better. We wish it would last longer..... Kolby has a port implanted underneath her left breast. It is a thin, soft, plastic tube that was inserted into her vein in her chest. This allows medicine to be given into the vein or blood to be taken from the vein. The port is accessed by inserting a special needle called a Huber needle. It is then pushed into the skin and into the port. This is where they take her blood and check her blood levels and also where she receives her chemo. An hour before Kolby goes to the doctor, there is a special cream we rub on it to make it numb. She does not feel the needle go in, but we still close our eyes and cringe each time the nurse accesses her port. In this picture Kolby is having her ...

Tuesday was a "5" Day! Kolby told me she wanted to do something today to keep her mind off of "things". She wanted to go in the pool but then decided she didn't want to. Her friends Gabby and Chloe wanted to hang out and watch movies with her. I thought it was a great idea since she was having her chemo treatment the next day. She vacillated for a while and then she decided to hang out with them. (Which I was really glad for her and me .) I want Kolby to have fun and not just lay around the house. I know it's hard when she doesn't feel good. She admitted to me that she had to make her self take a shower and get ready and then she did feel better. Kolby cannot really go out into public because of her immune system. She is limited to what she can and cannot do. She is starting to get a little cabin fever. I see her wanting to do something, but then on the other hand she wants to just sleep so she doesn't have to feel anything and to forget...

My day was horrible. My stomach has never hurt this bad my whole life. All I wanted to do was sleep so I didn't have to deal with the pain. This day really sucked. I also never cried so much in my life. This is the most I have cried since I have had cancer. Why does this have to happen to me? I am really sad. I just wished this didn't happen to me. My stomach still hurts. I want it to go away. Nothing comforts me but when my mom tickles my back and my dad cracks stupid jokes. I tried taking about 4 baths today to help ease the pain. It helped for one second. This is just horrible and I would never wish this on my worse enemy. I was going to hang out with some friends today and I wanted to sooooo bad but I just wasn't able to. I just do not understand why this is happening to me. Now I am off to Sonic to get a slushy with my mom. Then to sleep. I hope. That's it.

Kolby had a nice and quiet 4th of July weekend with family. Kolby wanted us to have matching T-shirts, so Kristi and I went to Old Navy and bought some. (Thanks Old Navy for the $5.00 sale :o) We took pictures while watching fireworks with the family. It doesn't matter how old my girls get, they still love watching the fireworks. I just love my family, and I am so thankful for moments like these. In the hospital they used this scale to measure pain. For example, a 1 was feeling no pain, and a 10 was unbearable pain. So, I will scale this weekend. Kolby was at a "3" most of the time, and there were a few occasions where she was boarder lining a 10. I am learning a lot about Kolby lately. She is very quiet and reserved about her feelings. Whenever she is at a vulnerable moment, she quietly asks me to not write down that experience in her blog. There are so many experiences she has gone through that she wants to keep private. I understand her requests and I honor them. Watc...

Kolby’s website was originally named so appropriately by Sarah Barlow, one of our family’s closest friends. I think that more than anything it describes this strong selfish desire we have… not to lose our daughter in this battle with NHL cancer. Today we won another round in that fight. We got some results back from the cancer center today that had a lot of positive in it. Kolby’s new MRI and PET scans indicated that the cancer is on the retreat. Her tumors have reduced in size significantly as seen in the MRI photos, and the cancer cell activity has also dropped significantly. This is a good indication that the chemotherapy treatment is having a positive effect on her bone lesions and tumors. She still has mild patchy areas of disease on her sternum, anterior right first rib, anterior left 5th rib, in her lower vertebrate, and in her pelvic area. These areas still lit up on the PET scan, but the activity was greatly reduced. There was one area on her on her right first rib that has mi...

I want thank Kristi and Kylie for designing these T-Shirts. At first I didn't want my name on the shirt. I really do not like having the attention on me. But, after I saw them I really liked them. Thank you Kristi and Kylie. Also, thank you so much Vicki and Dale for making the t-shirts, you did a great job. I just love them. Thank you!!! This has been really hard on me. I wish I felt better and I want my healthy body back. I miss hanging out with my friends and doing the things I like. I also do not like it when I feel sick. The blisters in my throat and mouth are gone right now, but when I take chemo again I know they will come back. It has been nice feeling good these last few days. I haven't had to have chemo this week because of the scans. It is such a good feeling to feel good again. I never really appreciated my healthy body till now. The chemo makes me feel horrible. I have no energy. I feel nauseous all the time and I get horrible headaches. They hurt so bad. I get s...