YOU SAY GOODBYE AND I SAY HELLO

Well, Kristin has come and gone.....but our family loved every minute that we had with her. We anxiously awaited her arrival and the hugs felt oh so good! While she was here, she loved sleeping in her own bed, visting friends, having home cooked meals, wakeboarding. Her visit to the Renown Speciality Clinic went well. She had an LP with intrathecal methotrexate. Her meds were kicked up a notch because her counts have come up. They are ANC2322, WBC 5.4 HGB 13.3, PLATES 237.WOW!! She has not had those kind of numbers for a long time. So, she is now taking her daily meds at 50% which are mercaptopurine (affectionately called 6mp), prednisone, once weekly methotrexate, and weekend bactrim. I am hoping that she does not experience the myleosuppression(blood cell production suppression) issues she had this summer.It was very good to see Dr. Raphael, Tia, and Sandy. We were sad to have missed Connie, but I do believe I am having pancakes with her at the Childhood Cancer Awareness Day in September. Her next visit is in September in Salt Lake.

I will say that I loved hearing her bathroom door creak in the middle of the night, breathing in her yummy perfume, hugging her just because and rubbing her head while watching a movie. I cherish these moments so much. I guess we all should as I know there are many parents who would give everything for these moments. Do not let these moments pass as they are what truely matters!

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