THANKS FOR FOLLOWING THROUGH, FINALLY

So, pardon the sarcasm in the title, but finally someone in Salt Lake followed through on Kristin's current state. On Monday she had labs repeated as per the doctor's orders on Saturday. The student health center checked the counts and evidently said to go ahead and resume meds, but check with Primary's first. Whoa.....wait, I thought she was possibly having an allergic reaction to something! So, Kristin, being the smart cookie that she is, did not resume her meds. She did call Salt Lake, but only left a message. Her call was never returned. She let me know she was very frustrated with how this is being handled and felt like no one cared about her since there has been no follow through over the weekend and her call was not returned. This did not sit well with me, so I made some phone calls. I finally spoke to a nurse practitioner and they said they nothing was written in her chart and there were no labs....anyho, she was concerned about Kristin's "hive/rash" and why her counts are so suppressed. My dear friend Tammy Brunst from Orem, was there to take Kristin to Salt Lake on a moments notice. I am so grateful. thanks Tammy! Her ANC as of Monday is only 367. This is myelosuppression,blood cell prodction is suppressed. Kristin has been dealing with this since the very beginning. eg.all those life saving transfusions! During maintenance the ANC should run between 1000-2000. Hers has dropped too low three times which means her counts are too suppressed. Now, that I think about it, ever since the 6-mp was increased by 1/2 a pill, she has struggled. Ironically it was increased because her counts were too high. Once again meds are stopped until the next appointment when counts will be rechecked. They will be running a test to see how she metabolizes 6-mp as they suspect this is the culprit.

It is my hope that maintenance will be a bit of a smoother ride from here on out. I want to scream sometimes and shout, "give the girl a break!" I know that things can be worse. We have been there. Yes, blessings are counted every single day. I hold my breath,tighten the old life jacket, start paddling and trust that there are smoother waters ahead.

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