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 met with the bone marrow staff and the director of pediatric leukemia and lymphoma. Dr. Cecilia Fu was the doctor who sat down with us to discuss Kolby’s disease, its treatment, and the long term side effects. You could tell pretty quickly that she was a gifted and brilliant physician. We had sent Kolby’s file down in advance of her appointment at UCLA. She was really versed on Kolby’s sickness even though she said it was incredibly rare as far as lymphomas go. She spent a considerable amount of time helping us understand what they knew about her disease. With diagrams and discussion, she educated us all about what Kolby was going through, as well as what are some of things we might expect to see in her future. The doctor explained that we all have 23 pairs of chromosomes in our genetic code. For some reason in Kolby’s situation, her number 2 chromosome and her number 5 chromosome have attached themselves together and created an ALK protein that develops into a cancer cell with its own unique genetic code.
There are currently differences in opinion between doctors on what treatment regime works best. There is not a lot of clinical information available on the type of cancer that Kolby has, and most of it was gathered within the last ten years. Dr. Fu did say that the protocol that Kolby is undergoing is considered to be the most common, least obtrusive protocol and that her potential for success was consistent with some of the more aggressive treatment regimes. That is important when you monitor or gage success. A good treatment regime is only good when the patient experiences success. More aggressive treatments carry more damaging side effects. So the idea is to try and find the least aggressive treatment with the most amount of success.
The doctor indicated that they had met in committee to discuss her file. They also have consulted outside doctors as well to get additional opinions. They confirmed her original diagnoses from the pathologist reports. They indicated that her initial response to the current treatment was a good sign that she is chemo receptive. Some patients are chemo resistant and need to have a different more intense treatment protocol. However with respect to Kolby, the doctor was also very pleased with the response to the treatment found in Kolby’s scans. That was very comforting to know that they felt like we were winning the battle in fighting this cancer. It also helped knowing that she was going in the right direction with her care and treatment. We felt comfortable with the doctors in Las Vegas and Dr. Fu repeatedly praised the hospital and doctors from the Pediatric Oncology Department at Sunrise Hospital. Her opinion was that she was getting as good of care as UCLA could provide. Pediatric oncology is a relatively small group of doctors who network and consult with each other regularly. They are very familiar with one another and treatment protocols are shared openly in that small community.
While we were discussing where we currently are, Dr. Fu wanted us to know of some things that we might be experiencing in the future. Kolby’s cancer spread from her lymphatic system to her bones, and because of that there are some potential dangers still ahead. There is a significant number of patients who when they have the kind of bone involvement that Kolby had, tend to be chemo receptive initially and then just when you think the cancer is gone, it turns around and the cancer becomes chemo resistant. She said that the cancer gets “smarter” than the chemo and they need to come up with an alternative treatment. Typically that treatment will include a bone marrow transplant. The doctor did not feel like Kolby was in need of a bone marrow transplant at this time, but that it was a potential rescue treatment, should the cancer return. Many patients with Kolby’s type of cancer tend to relapse within the first 1-2 years after treatment. It appears that in Kolby’s case that they feel like because of the excessive bone involvement, that she will not be her own donor and that we will need to find a bone marrow donor should she need a bone marrow transplant. They want us to get tested soon, as a family, and also encourage friends and relatives to be tested as potential bone marrow donors; so that we will be ready should Kolby ever need that treatment.
I think the low part of the visit was when she discussed the long term side effects on the chemo protocol that Kolby is on. The doctor indicated that the drugs Kolby is currently on.. are really hard on her body. She will have a weakened heart and she will need to have regular EKG’s throughout the remainder of her life to check the condition of her heart. She is at a very high risk when it comes to exertion on her heart. For example she can do aerobics but not really any significant weight lifting. This drug damages the fertility system and if she does get pregnant in the future, she will have to be seen by a high risk OBGYN doctor. While she may be able to fight off this initial battle with cancer she will be at a higher risk later of getting other types of cancer, or struggle from the harsh side effects caused by this treatment regimen. Her hands now shake like a person with Parkinson’s disease, but that will eventually stop after she is done with all of her chemo treatments. The constant pain she feels in her bones is due to the drugs they give her to bump up her bone marrow blood making factory. It is like having growing pains times 15.
The reality of her situation comes back every time we think things are getting back to the way they used to be. Some people say that change is good. But what they are really saying is that the one thing that you never thought would happen…has happened. This is Kolby’s new life and it is still really hard getting used to.
The high point of the trip was the wonderful weekend we got to spend with our parents Darrell and Diane. They have really been concerned with Kolby getting the best care possible. They also tend to spoil their kids and grandkids with kindness. We sat in a cabana around the pool at the hotel and caught some cool California sun and some great food. We really appreciate all they do for their children and grandchildren. They are both amazing!!! Kolby felt well enough to do a little walking and window shopping as well. It has been a relaxing little weekend trip, but we are actually really anxious to get back home in anticipation of Kylie and Jeff having their first little newborn baby. Kylie is due any minute and we are about as excited as soon to be “Grandparents” could possibly be!!! All in all it was an important and significant trip in Keeping Kolby. We had some highs and some lows…but I guess everyone has days like that!
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 was really nice.
We met with the bone marrow staff and the director of pediatric leukemia and lymphoma. Dr. Cecilia Fu was the doctor who sat down with us to discuss Kolby’s disease, its treatment, and the long term side effects. You could tell pretty quickly that she was a gifted and brilliant physician. We had sent Kolby’s file down in advance of her appointment at UCLA. She was really versed on Kolby’s sickness even though she said it was incredibly rare as far as lymphomas go. She spent a considerable amount of time helping us understand what they knew about her disease. With diagrams and discussion, she educated us all about what Kolby was going through, as well as what are some of things we might expect to see in her future. The doctor explained that we all have 23 pairs of chromosomes in our genetic code. For some reason in Kolby’s situation, her number 2 chromosome and her number 5 chromosome have attached themselves together and created an ALK protein that develops into a cancer cell with its own unique genetic code.
There are currently differences in opinion between doctors on what treatment regime works best. There is not a lot of clinical information available on the type of cancer that Kolby has, and most of it was gathered within the last ten years. Dr. Fu did say that the protocol that Kolby is undergoing is considered to be the most common, least obtrusive protocol and that her potential for success was consistent with some of the more aggressive treatment regimes. That is important when you monitor or gage success. A good treatment regime is only good when the patient experiences success. More aggressive treatments carry more damaging side effects. So the idea is to try and find the least aggressive treatment with the most amount of success.
The doctor indicated that they had met in committee to discuss her file. They also have consulted outside doctors as well to get additional opinions. They confirmed her original diagnoses from the pathologist reports. They indicated that her initial response to the current treatment was a good sign that she is chemo receptive. Some patients are chemo resistant and need to have a different more intense treatment protocol. However with respect to Kolby, the doctor was also very pleased with the response to the treatment found in Kolby’s scans. That was very comforting to know that they felt like we were winning the battle in fighting this cancer. It also helped knowing that she was going in the right direction with her care and treatment. We felt comfortable with the doctors in Las Vegas and Dr. Fu repeatedly praised the hospital and doctors from the Pediatric Oncology Department at Sunrise Hospital. Her opinion was that she was getting as good of care as UCLA could provide. Pediatric oncology is a relatively small group of doctors who network and consult with each other regularly. They are very familiar with one another and treatment protocols are shared openly in that small community.
While we were discussing where we currently are, Dr. Fu wanted us to know of some things that we might be experiencing in the future. Kolby’s cancer spread from her lymphatic system to her bones, and because of that there are some potential dangers still ahead. There is a significant number of patients who when they have the kind of bone involvement that Kolby had, tend to be chemo receptive initially and then just when you think the cancer is gone, it turns around and the cancer becomes chemo resistant. She said that the cancer gets “smarter” than the chemo and they need to come up with an alternative treatment. Typically that treatment will include a bone marrow transplant. The doctor did not feel like Kolby was in need of a bone marrow transplant at this time, but that it was a potential rescue treatment, should the cancer return. Many patients with Kolby’s type of cancer tend to relapse within the first 1-2 years after treatment. It appears that in Kolby’s case that they feel like because of the excessive bone involvement, that she will not be her own donor and that we will need to find a bone marrow donor should she need a bone marrow transplant. They want us to get tested soon, as a family, and also encourage friends and relatives to be tested as potential bone marrow donors; so that we will be ready should Kolby ever need that treatment.
I think the low part of the visit was when she discussed the long term side effects on the chemo protocol that Kolby is on. The doctor indicated that the drugs Kolby is currently on.. are really hard on her body. She will have a weakened heart and she will need to have regular EKG’s throughout the remainder of her life to check the condition of her heart. She is at a very high risk when it comes to exertion on her heart. For example she can do aerobics but not really any significant weight lifting. This drug damages the fertility system and if she does get pregnant in the future, she will have to be seen by a high risk OBGYN doctor. While she may be able to fight off this initial battle with cancer she will be at a higher risk later of getting other types of cancer, or struggle from the harsh side effects caused by this treatment regimen. Her hands now shake like a person with Parkinson’s disease, but that will eventually stop after she is done with all of her chemo treatments. The constant pain she feels in her bones is due to the drugs they give her to bump up her bone marrow blood making factory. It is like having growing pains times 15.
The reality of her situation comes back every time we think things are getting back to the way they used to be. Some people say that change is good. But what they are really saying is that the one thing that you never thought would happen…has happened. This is Kolby’s new life and it is still really hard getting used to.
The high point of the trip was the wonderful weekend we got to spend with our parents Darrell and Diane. They have really been concerned with Kolby getting the best care possible. They also tend to spoil their kids and grandkids with kindness. We sat in a cabana around the pool at the hotel and caught some cool California sun and some great food. We really appreciate all they do for their children and grandchildren. They are both amazing!!! Kolby felt well enough to do a little walking and window shopping as well. It has been a relaxing little weekend trip, but we are actually really anxious to get back home in anticipation of Kylie and Jeff having their first little newborn baby. Kylie is due any minute and we are about as excited as soon to be “Grandparents” could possibly be!!! All in all it was an important and significant trip in Keeping Kolby. We had some highs and some lows…but I guess everyone has days like that!
I am completely fascinated with everything you shared in this post! I am also amazed at the compassion of the medical professionals that are treating Kolby. What a blessing! It must be so comforting to have that second opinion and to know that the care Kolby is receiving in Las Vegas has been discussed and approved by several pediatric oncologists. Amazing...
ReplyDeleteI hope you're able to make it home without the misery of nausea. And hooray for Kylie! Good luck to everybody in the days ahead :)
I'm just being honest here, but that post made me cry!! I really appreciate all the detailed info that was shared. I want to know the details! That's great that you're responding the the Chemo for now and that you're doctors are truly helping in the best way they know. That's probably VERY comforting!!! If there's a chance to beat this, you have it!!
ReplyDeleteNow knowing the side effects puts it on a whole different level (in my head). I thought about those things as I read them and I can't help but sit here and cry.
I am just so sorry that you have to go through this as KOLBY and as a family. It just doesn't seem right, but obviously it's how it has to be. It's a huge blessing to have wonderful family and friends to help you through it though! We love you dearly and always know that you are in our prayers...always!
I am so glad that you could get the opinions of UCLA. I think that will make you feel extra confident in Sunrise Hospital doctors. Kolby, I am so, so sorry you have to go through this. I know that the Lord can work miracles and every prayer of mine includes you.
ReplyDeleteJohn, thank you for posting such detailed information. I can't image how much knowledge you've gained through your research and diligence in learning more about Kolby's condition and treatment. I am awed at the way you are able to write and explain the complexities of the medical issues Kolby is facing. I often have a hard time myself trying to repeat and recite accurately what my doctor tells me. It sounds like you are in good hands with the doctors in LV and at UCLA. My heart aches for what must seem like a mountain ahead for Kolby and your family. I love you all and will continue my prayers for you. Oh, and I agree Dana does have the heart of a city block!!!
ReplyDelete