TO ANSWER YOUR QUESTIONS

Our last trip went very well and again Kristin cleared the high dose methotrexate like a pro. Although she will continue to receive methotrexate in the future, she does not need to have the high dose methotrexate again. We are glad to say good by to that bad boy. Kristin developed an unusual side effect that is not seen too often. After the second dose, and we returned home, she said the bottom of her feet hurt. In fact, she walked on her tip toes for several days until the pain subsided. Shortly thereafter, huge blisters erupted on the heels of her feet (huge, think Texas!) and her thumb. They were filled with fluid and very painful! I have noticed a pattern in that after each cycle of high dose mtx, there seems to the pain, new blisters bubbling up underneath the old ones, peeling and then it is repeated over a period of two weeks. Hopefully we have seen the last of them. Her feet have really taken a beating and I think it is because our feet have poorer circulation. Unfortunately it is sandal time and she hates all the war wounds visible.

We are just about done with Interim Maintenance 1. This is the 63 day course of chemo that we have recently been on and it ended on June 1. Yipee! this means that Kristin has endured approximately 149 days of chemo therapy. I often have people ask, " Is that it?, Are you finished?" Sadly, no. To date we have completed the following:
1. Induction (29 days)
2. Consolidation (57 days)
3. Interim Maintenance 1 (63 days)

We have the following to complete:
4.Delayed Intensification 1 (57 days) scheduled to begin on June 9th at Renown
5.Interim Maintenance 2 (56 days)
6. Delayed Intensification 2 (57 days)
7.Maintenance (84 day cycles repeated until one year after beginning maintenance, approx. April 2010)

We do not have to go back to Oakland until the beginning of July. We will be able to go to Renown for much of the upcoming chemo. We are so glad. There are often a few days to a week of waiting to move on until Kristin's counts have recovered. (some meds cause her counts to drop slightly while others cause dramatic drops.) For example: ANC (absolute neutrophil count) must be greater than 750 and platelets must be greater than 75,000.

Add this all up and that is 403 days to wipe out ALL forever. We were told plan on 2 1/2 years in treatment. Yes, she will go to college on chemo, but she will not be in the intensive phase. A high price but well worth it! Dr. Raphael said,"We are hitting her with everything we've got!" no kidding...... People always ask "why does it take so long?" Keep in mind that in the 1960's leukemia was described in medical texts as "incurable." Curing ALL is one of modern medicine's greatest achievements and Kristin is a recipient of that miracle. In a nutshell it takes that long to completely wipe out all leukemic cells when treating ALL. This is not the same for all types of leukemia and obviously other cancers, each one calls for different protocol.

Lastly, Darren and I are continually humbled by the outpouring of support, prayers and compassion that has been extended to Kristin. Please continue to pray for her and the many other children in the fight against childhood cancer. We love you all!


Comments

Post a Comment

Popular posts from this blog

The Beginning

Image
Hello to all from Children's Hospital Oakland, California To it still difficult to grasp that we are actually here...hearing this news...living in this new world. Kristin's official diagnosis is ACUTE LYMPHOBLASTIC LEUKEMIA precursor b. This is very treatable form of cancer. She is enrolled in a cutting edge program for treating A.L.L.. All of us here are very optimistic. She is under the care of amazing Doctors and the recipient of the miracles of modern medicine. It will be a very rough 2 years or so, but she will survive. Thus far, we have been on the fast track. This is an amazing institution and we are very, very fortunate to be here. Nothing short of kindness and compassion have been shown to us from the very beginning. Upon our arrival on Monday, she has undergone a bone marrow biopsy, 2 lunbar punctures, echo cardiogram, chest x-ray, broviac cath . placement, and numerous pokes and prods. She received her first chemo treatment; injected into the spinal fluid, Wednes...
Read more

GO GO SPECIAL K!

Our last bone marrow biopsy went great! It showed no leukemia cells. This shows that she is having a positive early response to the chemo which is a very, very good thing! All of her labs are coming back "smashing!" We are dealing with secondary complications such as situational diabetes. This is only tempoary and should resolve once we are off the strong steroids. Consequently she has to have blood sugars checked often, insulin injections, and follow a carb controlled diet. not fun! In trying to be supportive, I am counting carbs along with her. It is hard when someone has a birthday up here every other day and wants to share their cake. Keep the dang cake to yourselves! Kristin is getting very tired more often and is noticing that she can pull out clumps of hair....I am sad. Although I knew this was coming, I was taken back by the situation and caught off guard. Baldness goes hand in hand with leukemia and every parent up here would rather have a beautifully healthy, shini...
Read more

UPDATE

Kristin is currenly in room 5330 getting two units of PRBC's. Her counts are on the way down and I am hoping that this is all the drama we will see. It has been a long, difficult...two months.....seems like forever.... especially as we approach the one year mark. Our daily excursions to Berkley have been uneventful. (I decided that if I had another life, I would like it to be in Berkley. I love this area!) We are going to Alta Bates Hospital. I am taken by the compassion, charity, and warmth that the patients are treated with here. It is the same spirit you feel when you walk onto the 5th floor here at CHO. Wonderful people who truly and compassionately love what they do. Back to her radiation.....Her radiation takes all of two minutes. I call it a "lick." Thankfully she is getting a very low dose so the side effects are pretty much nil. Kristin really looks forward to returning to school on a more regular basis. I cannot begin to tell you of the hardships Kristin has ...
Read more