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Showing posts from March, 2009

LAB UPDATE

Having not been out of the house for a week or to the gym, Kristin was anxiously awaiting the lab results. She was dressed for the gym and keys in her hand ready to go if she got the green light . It was a GO ! WBC 2.0 good, ANC 840 getting better, PLATES 270 good, HGB 13.4. We are excited to have gotten through this bump without too much incident...cold feet or not...things could always be worse...right? Shout outs to all who thought of Kristin, prayers, and kind words, she is truly blessed. Love to each and every one of you!

he said,"I KNOW EXACTLY WHAT THIS IS."

We just returned from Renown. Dr. Torkleson was in town so it was nice to see him for a moment. He examined Kristin's feet and ankles and "I know exactly what this is...it is called Raynaud's syndrone." Raynaud's is a condition that causes some areas of your body — such as your fingers, toes, tip of your nose and your ears — to feel numb and cool in response to cold temperatures or stress. In Raynaud's , arteries that supply blood to your skin narrow and constrict, limiting blood circulation to affected areas. In Kristin's case this is due to the meds that cause her neuropathy particulary vincristine. Although the right foot seems to have the worst of it, both feet and ankles are affected. Over the weekend one toe was so purple it looked nearly black ,her feet were and still are very cold to the touch and the feeling in them has"dulled." Even though she does not feel that her feet are cold, she needs to keep socks on them and try to stay warm. T

JUST HANGING OUT AT HOME

As of today Kristin has had no fevers. I am grateful and count this as a blessing in her life. Except for an odd rash on the bottom of her foot and around a few toes, all is going smoothly and there have been no complications from this neutropenic episode thus far. I believe we repeat labs on Monday, so until then I still have absolute control of my 18 year old! ( evil snicker ) How many of us can say that? I am suspecting that the rash is a reaction from the mercaptopurine.

NEW DEVELOPMENTS

Kristin had labs drawn yesterday. The labs last week indicated that her counts were falling as I had mentioned earlier. The results showed they are unfortunately on a down ward slide and not on an upswing as I had hoped last week: ANC 4 not good news, WBC 0 this is the white blood cell count and that is not good either,PLATES 270 that is good, HGB 13 this is good also. What does this all mean? Neutropenia. Which is simply you have no white blood cells,neutrophils, which play a major role in the body's defense against bacteria. So, now that she is neutropenic all chemo is stopped until counts can recover and then meds will be adjusted accordingly. I should add that this is chemo related not relapse and that yes, there is still a remission.I was crushed by the timing of this news yesterday and took it a bit hard. We have had worse news, but this time it did not still well for a moment. Her sore throat is NOT mucositis as I worried that it would be, but as of last night it was very

RECENT PICTURES

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I just wanted to share some pictures from Saint Baldricks 2009. Connie Goes nurse practitioner & Dr. Caroline Hastings Jackson Cirillo & Mom, Tammy Kristin and Jackson Jackson,Justin Christie, Wyatt (aka chicken little) Kristin and Connie

LABS, ST.BALDRICKS & NATALIE PORTMAN

Earlier in the week Kristin was feeling,"not right" as she put it. She came home from school exhausted and stated that she had fallen asleep a couple of times in her classes. The next day she did not even go to school and rested most of the day. She complained of a headache that seemed to persist for the previous three days, and that her knee had begun to hurt her. I was mortified to say the least and went to call Oakland. We did labs and could only wait. Between this blog and myself, I usually refrain from posting much of my anxiety, fears and what Kristin is going through, as I try so hard to focus on only the positive. Short to say, if you could read between the lines..... I have done this out of respect for Kristin and for some sense of privacy. Not to mention the fact that there are some very awful experiences which are better left forgotten. But, this time...I will let it all out and say that I was terrified. Terrified that the worst possible scenario imaginable had hap

AMAZING DOCTOR,NURSES & LOVE

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Tia Speirs, Kristin, Sandy Payne oncology nurses at Renown After working a long day in the clinic, Sandy and Tia made sure all the families had a fabulous time. They work tirelessly and are so very kind, compassionate and tender to the children. I wish each of you could catch a glimpse of their passion and love for the children they serve. Kristin and Dr. Caroline Hastings pediatric hematologist/oncologist Children's Hospital Oakland Oakland, California & Renown Reno, Nevada These pictures were taken at the Angel Kiss, Keaton Raphael, Give Hope Christmas party for the local families in our area. Dr. Caroline Hastings is a gifted and much loved healer. Her compassionate service and sacrifice has blessed many families in our area. Weekly, while leaving her own family behind, she travels to Reno to tend to Kristin and other children. Without her services, Kristin and many other children, would have to travel to Oakland more often to be treated. She is responsible for establishin

"I AM LOOKING FORWARD TO A GOOD NAP!"

Kristin's clinic visit went much better this week. Here are her most recent labs;ANC 2600, HGB 13, PLATELETS 260, WBC 3. Because the ANC is higher than 2600, they will increase the meracaptopurine a wee bit. She is pretty good at taking her meds, but I found one in my car the other day. I thought, "how odd, is that one of Kristin's pills?" sure enough it was. She has no idea how it arrived at that point, nor do I. I wonder if others have escaped their fate also and this is why the count is a little elevated? When I asked why we needed to increase the dosage, I was told that the goal during maintenance is to keep the ANC (absolute neutrophil count, bacteria fighting white blood cells) between 1000-2000. The normal range for a healthy person without "whacked out" labs would be 3000-5000. I knew all of this. But, for a brief and fleeting moment, the burdensome thought had recessed into a corner of my mind and lay dormant. Then, once again, I am reminded

THINGS COULD ALWAYS BE WORSE, RIGHT?

Kristin had her clinic appointment today. Since she was having an LP (lumbar puncture with chemo injected into the spinal fluid, drawing off fluid for testing, and vincristine injected intravenously...yucky day) she needed to be NPO.(nothing by mouth) So, after a very light dinner last night, she was a very good girl and did not eat or drink in anticipation of the procedure. She was scheduled to be there at 12:00 for her physical. Around 3:00 they tried starting her iv's. Unfortunately she was quite dehydrated by this point making it very difficult to successfully start the iv. After a few unsuccessful, painful attempts, she passed out in my arms. They moved her to another room and tried to start an iv in her arm. Once again, after more tearful pokes, they got one started. While trying to inject the anesthesia, Kristin did not go to sleep, she they gave her more. This is usually a quick acting anesthesia, but we were getting no where. She was at the end of her rope and des

GOING TO J.A.

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What a difference from just one year makes. She is all smiles and so very much stronger than last year at this very time. If you read back in the blog to this time last year, you will see exactly what was happening. In 08, her date, the same as this year, Robbi, and the rest of the group brought her flowers and wished her well. Her dress we bought was left hanging and the tickets unused. She was so disappointed, but at the same time realized just how bad she was feeling and knew it would have been an impossible feat to attend the dance. Not this year! She had a great time , with the same date she had planned on going with last year, Robbi LaRovere. Just a note- This week Kristin is scheduled for an LP (lumbar puncture with intrathecal methotrexate, simply put, chemo injected directly into the spinal fluid) They will be drawing off some fluid for testing. We will also be doing labs to see what her counts are. I am anxious to see all these results. Having them done on a regular ba