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IMPROVING :-)

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I am happy to report that Kristin was released from the hospital yesterday. The pain is not as intense, sores appear to be retreating, fever has subsided, and she seems to be slowly improving with the exception of some sore gums. It seems the worst is over. I was able to talk to the doctor and asked what exactly she has. She said it was the hand, foot and mouth virus...aka coxsackie. Who knew? A big thank you Grandma Inza and Nate for their TLC . Thank you for the prayers offered on her behalf. X & O to everyone .

NOT SO STELLAR... :-(

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"Mom, I have this sore throat, but don't worry, I can handle it," Kristin reported earlier in the week. Well, I have no doubt she knows exactly what to do and that she is more than capable. Unfortunately the unassuming sore throat turned into much more than anyone expected. While visiting her Grandma, the pain became severe and they went in for a strep test Friday afternoon. The test was negative and some meds were prescribed but by Saturday the pain became unbearable (on the handy dandy pain scale she put it at a 9, which is pretty bad) making it too difficult to swallow the meds, and fever reared its ugly head during a nap. A trip to the ER was necessary. Some iv pain meds, other "stuff", fluids and labs were ordered. I was anxious to see the numbers. (and yes, I am hundreds of miles away, but I know Kristin is wanting and learning to take on more of her care herself, it still is hard to be so far away) At first we were told that her WBC (white blood cell coun

STELLAR!

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I think my heart skips a beat or two as the days approaching Kristin's clinic visits approach. Restless sleep consumes the nights preceding the checkup. A simple song on the radio brings torrents of tears . My mind races through all the fears of the unknown, oh no's and what-if's. Am I the only parent who feels this way? I do not think so. I know there are thousands of us who live this scenario every day. I pray that as time and research marches on, that there will be fewer parents who are members of this not so inclusive club we are a part of. I have hope that this day will come. Well, all sentiments aside, Kristin's clinic visit was, " STELLAR! " I was terribly anxious until I had the much anticipated labs in my hot little hands. This was with good reason as Kristin had some crazy bruising going on. Our dog had jumped on her while she was visiting. This, in and of itself, should be of no concern, but the naughty pup left some alarming bruise

JUST AN UPDATE

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Hello everyone! Kristin has had two clinic visits since April. I am happy to report all is going well thus far. For those of you who speak the language, here are the labs from May and June. May WBC 5.0 HGB 15.8 PLATES 182 ANC 240 April WBC 5.0 HGB 13.6 PLATES 200 ANC 360 What do all those numbers mean? She is doing great. Notice how stable the numbers are from month to month, remember having absolutely no ANC whatsoever(is that one word or three?), or hemoglobin and platelets so low she needed a transfusion? She still tires easily and has mentioned several times that her knee is bothering her. After a trip to some national parks it began to flare up and was causing her some significant pain on the pain scale. I know....knee pain!!!! Gasp.....Yes, I had my moment, as those were the words that started this ordeal. We both felt the fear for a short time. Luckily her clinic appointment was just two days away and she checked out fine. She will be seein

LIFE GOES ON

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The title is so true. During the good and the bad, life marches on. I find myself picking up the pieces of the "fallout" from the last few years. First, I am happy to report that all is going smoothly thus far. Kristin is due for labs next week and I am anxious to see them. I wonder if she is? As for the fall out...aside from the wreckage, I find myself grateful for so many things. The many meals brought to our home, mysterious envelopes of money in our mailbox, the sale of the Live Happy t-shirts, loaning of prom and homecoming dresses, free wigs, donations, care for the boys....not to mention the many scholarships and grants Kristin has received making it possible for her to attend college, and of course the prayers of faith, comfort and hope. I find myself sifting and sorting the still growing pile of bills....ugh! Cancer really knows how to break a bank in more ways than one. Never-the-less, life goes on ....as it should and I trust in the Lord that we are in his

THE SMILE SAYS IT ALL

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beautiful! Tia was there on day 1 with a hug and 828 eight days later also. I know this will not be the last. She wears the shirt well.... Connie, Kristin, Dr. Raphael, Tia, and Sandy Everyone loves a cupcake! She decided on strawberry - lime . Kristin made the flowers and they were so cute. We had Martinelli's to toast to the occassion. Kristin's much anticipated visit to the clinic was joyous. There were hugs to cherish, and pictures to capture the memories. Here counts were all good, the physical went well, and she is to have followup appointments and labs once a month for a year. Then, every six months... Our family celebrated quietly with each other. The weekend was magical and emotions came full circle. This is the real test folks. There is no more chemo to keep things at bay. Never-the-less, I have no doubt that the leukemia has been irradicated from her body. We know all too well things could have been different. I simply know that Kristin's time here upon this ear

TRIUMPHANT!

828 days...is a very long time. Our hearts are full of gratitude for this day, and humbled beyond description by the monumental tasks which have lead us here. This has been no small undertaking and should rightfully be shouted from every roof top. Well,that is a little dramatic, but honestly, I am overwhelmed with joy! If you have read our blog from the beginning, you know the story, the heartache, struggles and triumphants. All 828 days of them. Most importantly you know the kourage children living with cancer posses. It is humbling to say the least. Hopefully, one day, children will not have to live with cancer. They will be free of cancer. For those families who have lost their child to cancer, life without them is apparent as the "sun failing to rise." A heartache no one should ever know. If you find yourself privileged to know of a child suffering.... l ove them dearly, hold them tightly. Look into their eyes.You have touched a piece of heaven and I promise you will nev

COLOR MY WORLD WITH LIFE

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If " every man assumes the color of his surroundings " then I believe the days ahead are filled with bright smiles, and colorful promises of a very blessed life. PS tune in to this blog Thursday morning for the big reveal! And, does anyone comment anymore? if ever you do, we would love to hear from all who read and are sharing this journey, on this big day..... # 827!

And Then There Were....

2 days! I can hardly sleep at night Kristin!!!!!!!!

LET THE COUNT DOWN BEGIN

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I have waited for 824 days to write this. Let the count down commence! 3 What have you done with the last 824 days? I feel like I can recall each and day, each moment.  We are not the same people, emotionally, physically, mentally, and financially...... But, which ever way the dice may roll, we are much closer to the things that truly matter in this life.  Amazing what 824 days can do. ps I have a special post ready for Thursday morning....can't wait.

CHEMO, CUPCAKES AND CELEBRATING

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Dear Readers, We are anxiously awaiting the big day. Many feelings are floating around in my head, I can only imagine what is going through Kristin's mind. She is doing well. Problems with her feet still haunt her, but all things considered, "well" seems most appropriate. She has enrolled in a CNA course. She passed with a 97%. Not too bad. Then again, she is getting straight A's in school also. But who's bragging? If you know me at all, you know I love to bake. I have come to realize that this has been my coping strategy and therapy. For those of you close by, you are the ones who have benefited from my obsession. Anyone who comes to the house always leaves with sweets. It is a pleasure for me to give something that puts a smile on some one's face and happens to make their mouths happy at the same time. From complete, all out disasters to "Oh my, that's a good one honey!", I think I am getting better. I am asking all of you who read this blo

WHO'S COUNTING?

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Well folks, this is really big! Kristin has her second to the last push of chemo this week. I know, could it be so..... 27 days left and counting...... Labs are good. I assume. I am not sure Kristin relayed me the correct numbers. She said her hemoglobin was 3.1. (this is terribly low for anyone with a breath left in them and there was no word of a transfusion) Salt Lake never talks to me,which really gets me and I find completely beyond reason, but at this point in the game I will let it be. I find myself terribly anxious and at the same time elated. I have been told the anxious part is normal. But really, what part of any of this has been normal? PS It is that time of year for Saint Baldricks . If you wish to donate to an outstanding and worthy cause, please do so.

I KNOW YOUR ASLEEP BUT

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Things have been wonderfully quiet the last two weeks. Kristin had labs done and her meds are being bumped up to 100%. I called the student health center for results and talked to someone who normally does not report them. Based on those results, her ANC is only 1364. These results were wrong....which I suspected when he said her platelets are high at 17. Salt Lake called Kristin and said her ANC is in the 3000 range and that her meds need to be bumped. At those counts, yes they do. So, at 1:21 a.m., with the preface of " I know you are sleeping but ," Kristin sent me a text letting me know the status change. Given the time change, it was 2:21 a.m. her time.....I know, what ever could she be doing at that hour! Having FUN. Good for her :-) She is very concerned about another neutropenic episode and the ensuing consequences. I do not blame her one bit as they have landed her in the hospital one too many times with some serious complications. shingles, pseudomonas, etc.... I

Have You done Any Good Today?

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Eric, Kristin, Cody and Wyatt Look at that hair!!!!!!! Well, Kristin's lp with intrathecal methotrexate and push of vincristine went well. Her labs were up, consequently her daily oral meds were increased to 75%. This is what we expected. I am keeping my fingers crossed this will not make her counts go in the you-know-what again. One truism throughout maintenance is that she cannot tolerate the oral meds at 100%. Lets not go there again please. After our doctors consulted with the head of the study that Kristin is on, it was determined that she would be given vincristine at only 50% and then increased to 75% to give her feet some time to recover. Vincristine has been brutal on them. (If you could see them, you would be amazed that she can even walk) They need a rest and at only 50% the effects are still bad but not as crippling as when she is given a full dose. I hope that these side effects are not permanent. We have been told that most likely they are not. As much as we hate

GOOD LABS

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Just a quick update folks. Kristin had labs done yesterday. drum roll please.......... WBC 5.6, HGB 13.6, PLATES 322, ANC 2166. I suspect they will increase her daily oral meds a stitch. School is going well and we told her we are expecting straight A's as she has a light academic load this semester. Either way, she works hard and that is what matters. She has a bit of a cold, sore throat and is very tired, but no fever!!! With these labs I am not too worried. As always, your love, support and concern are appreciated more than you will ever, ever know!

NOT SO EASY-PEASY

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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

HAND IN HAND

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I am now home and Kristin remains in Provo. She is settling into her routine of the daily iv antibiotics Gentamicin and Levaquin. (i hope i spelled those right) The Picc line is not as uncomfortable now and she is figuring out how to work with it a little better each day. As of today her ANC hoovers at 596. This is so much better than the last week. For you or I, our ANC (absolute neutrophil count...those awfully important, bacteria fighting, white blood cells that help fight infection) is around 5000, give or take. During maintenance the goal is for this count to dance between 1000-2000. I have no doubt that by the time her next appointment comes around next week she will be within the desired range. The pseudomonas aeruginosa is responding well to the meds. Although we are both a bit frustrated with the fact that she was discharged without any wound care instruction. I am not surprised by this. It is quite nasty and painful and I am not sure quite how to approach the dressing changes

IS THERE SUCH A THING?

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At the start of the day, Kristin and I resolved ourselves to the fact that she would be held hostage for at least two more days as per the resident who spoke with us. There were no improvements on her labs today and the resident said she wanted to see a little more improvement before she went home. Together we conjured up a whirlwind of top notch activities. "we could catch up on the OC, take naps, lots of naps, change the sheets, google gross pictures of pseudomonas', order take out from food service,(actually they do a pretty darn good job if you were to compare this hospital to the others we've frequented), wait with anticipation for Oprah, maybe another nap, zzzzzzzzzz. Then, there was a whisper of good news ... maybe. Evidently the resident was not quite right. Nay, the attending had other ideas. Since the cultures were negative, she had been afebrile (without fever) for 24 hours, and the abcess was not worsening, they felt it was safe to send her home. Even with an

JUST A FEW WORDS

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fever, neutropenic, cultures, specimens, pseudomonas,PICC line, tears, conscience sedation, antibiotics, fortaz, gentamicin, dagdabit!

FIRST THINGS... FIRST

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Well, Christmas was peaceful. Our family is humbled and grateful to be able to celebrate yet another Christmas together. Kristin was able to spend her winter break with us and left for P-Town just in time for New Years. Thank you AJ for letting her ride back with you. Next...I am packing a suitcase, tidying up the house, and finishing laundry to fly out to Salt Lake as we speak. Kristin was admitted for neutropenia and a possible secondary infection. I know....I was shocked when they called and said she was neutropenic. We had talked a few times today. This morning she said she had a large, red bump on her shoulder; yep, call it what it is, a zit, or so we thought... Later in the afternoon she said she was feeling feverish. Well, you know the drill. Take the temp, call it in and see what they say. I know what they will say....You need to be checked. By this point she is thinking she just has a spider bite, but it had grown to the size of a silver dollar. I said," I don't know