NOT SO EASY-PEASY

First things first.....a HUGE thank YOU to our good friend Tammy Brunst for escorting Kristin to her clinic visit. I worried all morning and hated the fact that I was not there. As hard as that is, I know she is exactly where she should be and so, so happy. You are the best Tammy and we love you!! Kristin's recent labs are WBC 5.2 great, HGB 13.3 great, PLATES 354 you guessed it...great, ANC 2.7 great. What does this all mean? The daily oral regime can begin again at 25% and then it will be adjusted as per her labs to see what she can tolerate. We all know she does not tolerate the meds at 100% so I am hoping that we don't go there again. We have gone down that road one too many times (I think it has been at least 3 or 4 times) with unpleasant consquences resulting in having to hold all chemo. I know it is through trial and error to find the right balance, but I am hoping there will be smoother waters for the duration of maintenance. Looking back through maintenance thus far, I think she has been "off" chemo more than "on"due to one thing or another.

The pseudomonas infection is clearing up beautifully. In fact,they were extremely happy to see how well it is healing and that is was not as bad as the doctor thought it would be.

Since Kristin still had the PICC line, she was able to get vincristine through the line before they pulled it out. This leads into the title post.....Having never seen a PICC line removed, I looked it up. On You Tube it doesn't look so bad. I also asked a friend and she said,"like a spaghetti noodle, completely painless." The nurse echoed the same sentiment and then the tug of war commenced. Funny how if anything out of the ordinary happened, it has happened to Kristin. This proved no different. Her vein did not want to give up the catheter. The nurse began saying things like, "I've done so many of these and this has never happend, we don't want to go to the O.R." Kristin was saying,"Where is my ativan?" I guess the catheter kept pulling back. Eventually it did come out, but not without a fight and some tears. Oddly there was not one drop of blood either. Easy-Peasy.... my pa-2-t.

Connie gave us Kristin's official stop chemo date-
APRIL 7,2010
Thank you, from the bottom of our hearts, for your continued prayers and kindness. Please remember Kristin and all the other children suffering. I am a personal witness to the fact that these prayers are felt and that they help to "ease the burdens" on our shoulders. Love to you all.

Comments

Christine Lothrop said…
Leslie, I am thrilled to see Kristin's blood work look so beautiful. You would not know that she is still in the mist of chemo. The goal for Liz in this phase is to keep her ANC between 1000 and 1500. I guess they don't want her body to fight off the chemo. Her counts are in the toilet at the moment. They will stop her chemo on Thurs. if her count continue to go down. Liz is at 100% right now, where everyone starts. She is have delayed fatigue from the radiation she received but hoping for a better week to come.
She did not have the mll gene arrangement. What is that? You can email me at: clothrop.lothrop@gmail.com
January 16, 2010 at 5:21 PM
Kyle Alfriend said…
hey there Kristin-

We will keep you in our prayers! Always fight to win.

I saw your cancer free day of April 7, 2010 That is my sons birthday. He will be 18 years old, healthy, and 18 months in remission from cancer.

You will out of this mess soon, and living a long and wonderful life!

TylerAlfriend.blogspot.com
January 17, 2010 at 6:15 AM
susieq said…
Kristin,

A catheter of any kind is NEVER fun - going in or out! Thanks to you and your mom for keeping this blog going. We will keep 'watching' your progress from Cali.

Take care,

Sue Lee
January 21, 2010 at 11:44 PM
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