Above and Beyond Cancer

Kristin continues to climb any mountain that is in front of her, even mountains in Nepal! She continues to thrive and move ahead with her life. What an honor this trip was.  Hear it loud and clear for those battling cancer...."HOW THINGS ARE TODAY ARE NOT HOW THINGS HAVE TO BE TOMORROW!"

Cancer Survivor hiking Himalayas to raise awareness

HERE IS A LINK TO ANOTHER GREAT STORY ON THE TREK!

Cancer Survivor hiking Himalayas to raise awareness

THIS IS SOME AWESOME NEWS!

KRISTIN AND I ARE TREKKING TO THE HIMALAYAS.  WE WILL BE CARRYING TIBETIAN PRAYER FLAGS IN HONOR OF THOSE WHO ARE IN THE FIGHT/FIGHITNG.  YOU CAN READ MORE ABOUT THE JOURNEY AT THE LINKS BELOW. 
http://www.radiatinghope.org/
http://www.ksl.com/?nid=1010&sid=21958689 

Clinic Follow Up Appointment

Kristin went to the Huntsman Cancer Institute for her followup appointment recently.  Her labs are great. WBC 8.3 good, HGB 14.7 good, Platelets 224 good.  Pretty much normal would sum it up.  She still deals with the late effects that are inevitable.

Life is good, very good.  Kristin and Nate will spend the summer with us while he works with a local judge and laywer. She hopes to spend time with me at the Northern Nevada Children's Cancer Foundation. School is going great and she loves focusing on her art.  She was 1 out of 10 students accepted into the visual arts program and she loves it. Her talent continues to amaze us.  The pictures above are from when we were fortunate enough to hear Mitt Romney speak when he came to town.  The drawing is of our dog Lucy. The bird is a piece that she worked on all last summer.  I wish you could see the detail as it is made up of tiny pieces of beautiful paper and then highlighted with gold leafing. We love the word "HOPE" it has so much meaning to me.  It sits beautifully in my office next to her Beads of Courage. I told you she was good. 

I continue to assist other local families who have had a child diagnosed with cancer and are walking down this bumpy road.  I love it.  Pleasepleasepleaseplease remember all the children in the fight of their lives. Love to you all!

December To Remember Sounds So Cliche

A December to remember sounds so cliche but my reflections on December 17, 2007 run so much deeper. In fact, I often find my self at a loss for the words to adequately express the depth of gratitude for the most precious treasures in my life. They seem so intimate, that at times I feel the only one who truly knows the depth of my gratitude is my Father in Heaven.

Where is all this going? It was just four years ago that Kristin was officially diagnosed with A.L.L. She continues to live by her motto of ...you guessed it..."Live Happy." School is going great and married life is beautiful.....as things should be. Late effects of childhood cancer are what they are. She is learning to deal with them as any responsible young adult would.....(you can interpret that any way you choose)

On her official "D day" she was running on a beach in southern California...quite appropriate. Back in 2007, the day was gray, chilly and drizzling a miserable rain that chilled you to the bone. This year, the skies were beautifully blue and the sun was shinning in all her glory. We talked briefly on the phone and decided that we were amazed at where we had been on this journey, and at the very same time we excitedly are looking forward to where we were going. (I think Lance Armstrong has said something to this effect once)

I concluded that although that December day in 2007 was gloomy and gray in more ways than one, that if we could have risen above the clouds, we could have seen that the sun was still shinning....literally. Childhood cancer has not left us in that miserably cold, gray world that is void of promise and hope. Although is has not been easy, We have risen above those clouds and the view is amazing. The sun shines and our lives are full, so very, very full......

Love to you all,

Yes, she's doing great.....

Here are the cliff notes, up-dated version, of what is going on in our home.

1. Kristin is doing great. Labs are great, late effects are....well, it is what it is and that is all I have to say about that.

2. Junior at BYU.

3. Married the the talented and amazing Nathan Sumbot.

4. HAPPYHAPPYHAPPYHAPPY!

5. She blogs her little heart out at www.bite-ology.com You should check it out. All those days watching Food Network in the hospital and spending days on end at home with me in the kitchen has inspired a new passion in her...cooking.

As for myself....I have taken on a new career. I never thought I would love anything as much as teaching, but I do. I now work passionately for the Northern Nevada Children's Cancer Foundation. Each day I am blessed to assist other families as they journey through childhood cancer. It is humbling to say the least and I absolutely love every minute of it. (www.northernnevadachildrenscancer.org) I posted a promotional movie I helped produce. I wrote the script, which was from my heart. If you think the voice sounds familiar....you guessed it, it's me!
My thought was to depict what life is like before a diagnosis, the devastation and then the foundation's mission.

My experiences have come with a high price, but as Hillary Weeks sings, it is a "Beautiful Heartbreak." A heartbreak only God, Darren and Kristin and I know. I pray for those of you who have not walked this road, that you may never know such heartbreak. We are blessed beyond measure and MY treasures are those that moths and rust cannot corrupt, nor thieves break in and steal."

Kristin inspires me each and everyday and it is an indescribable joy to walk beside her.

NNCCF PROMOTIONAL

The following is a promotional video which we unveiled at our 7th annual golf Tournament of Hope. It was my goal to depict life before a diagnosis, the devastation and then the mission of the foundation. I penned the script from my heart as only a parent who has traveled this road could. A big thank you to Kelly Dack for his talented skills and to Paul Cardall for his permission to use his beautiful music.

Kristin spoke at the tournament's reception. She has amazing. Her closing remarks to the 150+ crowd...."Now I am doing great. I am happy and this is all my own hair!" She received a standing ovation. I wish you all could have been there. I will post pictures soon. I promise.

IMPROVING :-)

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... :-(

"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 count) was 10!!!! Oh my word, really????? We have not seen those numbers since she was diagnosed and honestly, my stomach heaved! A bit later Kristin had the actual lab report in her hands. Here are the real numbers. WBC 6.3, HGB 10, PLATES 167. All within the normal range, although we have not seen a wbc over 6 for some time either. What it means is she is fighting some kind of infection, probably viral. They said she has ulcers which are covering the back of her throat, some on her tongue and uvula. I happened to be at the Hansen's cabin in Tahoe while all this transpired. Gerry also happens to be a dentist and gave her some great advice on how to deal with the ulcers. It was nice to consult with him on the issue at hand and I was grateful for his expertise. Thank you Gerry!

Saturday night was rough, but Sunday morning brought relief and a little perkier Kristin. Unfortunately it was short lived. As I type, she is lying in the ER in Salt Lake with more fever and pain. I am guarded and hope for a better day for her tomorrow. They admitted her for the night to keep her hydrated and the pain under control. We will see what the night brings.

STELLAR!

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 bruises on her thigh. Then she reported a few others. What is going on with those platelets? She had been rather active....water parks, Lake Powell, etc. I was putting my eggs in the "she's doing more physical activities than usual" basket. Yep, I guess have "labxiety." (lab anxiety) The resulting labs led my runaway mind to 1 Chronicles 16:34.

"O give thanks unto the Lord:

for he is good;

for his mercy endureth forever."

I am once again humbled beyond words for our Father in Heaven's very tender mercies. I will love him with all of my heart forever and ever.

WBC 5.2 HGB 14.7 PLATELETS 202 ANC 3000 absolutely beautiful!

JUST AN UPDATE

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 seeing a orthopedist shortly. I suspect that this is a complication from the chemotherapy. Indeed, these children pay a high price. Which leads me to say please continue to pray for all of our brothers and sisters; the young, the old, the care givers, the researchers, the families, who battle cancer. Prayers....I love them and each one of you.

LIFE GOES ON

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 hands.

THE SMILE SAYS IT ALL

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 earth is not finished,we are grateful beyond words for each and every moment.

Please continue to pray for all the families and children bearing this awful burden.

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.... love them dearly, hold them tightly. Look into their eyes.You have touched a piece of heaven and I promise you will never be the same again.

The following is a short story I wrote in honor of Kristin and her tale of kourage. You will only see smiles, and maybe even you. But, know that for every smiling picture, there are ten others telling a story of pain and suffering. A high price Kristin and so many others have paid indeed. The story is not over and I will continue to update Kristin's progress as she heals. Okay Leslie, stop blogging and get on with the show!!!!!!

ps one more thing, the story is printed in book form also. if you wish to purchase one, let me know and i will send you a link to do so. now you can turn up the volume and click play.

Gratefully,

Leslie

COLOR MY WORLD WITH LIFE

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

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

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 blog to give me your input....please. Now,
think big.....
1.what would you do to celebrate this day? 2. what kind of cupcakes would you bake?(if you don't know how to comment just click the "comment" link at the bottom of this post or if you are on facebook, you know the drill)  I'm thinking sky diving, shouting "She did it!!!!"

How grateful we are for a reason to celebrate such as this. This journey has been long, yet I know it will continue on for a lifetime in one way or another. It has taken our lives down a different path, by divine default, if there is such a thing, than the one we had planned. Perhaps a better one for the most part. But, along this path, I have discovered and felt the enabling and healing power of Christ's Atonement. He bore all of our pain and afflictions, not just our sins. Although Kristin's pains and sufferings have not been removed, I have been able to leave them at his feet and our burden's have been made light.I know that at times Kristin has felt this also. His divine grace has given us the strength to carry them. Grace is truly a precious gift that goes hand in hand with Christ's merciful Atonement.

WHO'S COUNTING?

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

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 told her to be aware of unusual symptoms and to be cautious. This may put the damper on the late night shenanigans....



p.s. I have been working on Kristin's end of chemo surprise for a while now...... Mum's the word for right now, but I cannot wait to share it with all of you. Let the count down begin.

Have You done Any Good Today?

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 vincristine,

it is a necessary evil.

She was so happy to see familiar faces at the clinic in Reno. Isn't that strange....happy to see her oncologist and nurses? Never in my life would I have imagined that I would be saying this. But, I will tell you that her caregivers have taken on a very important role in our lives. Not only have they fought to eradicate the leukemia that has invaded Kristin's life, they have come to occupy a very special place in our hearts that only they can lay claim to. Kristin and the other precious children they treat are amazing to say the least. Their spirit and steadfast determination is humbling beyond words. If you have ever wondered if you can do any good in the world today, do something for them. It does not need to be accompanied by fanfare nor does it need to be extravagant. If given straight from the heart it will warm the heart of the recipient and lighten the very heavy burden they carry.

Warmly,
Leslie

P.S. All the gushy stuff aside, I was going through bills the past few days. I have a tendency to put them in one big pile for three months at a time and then start to go through them. One at a time, making phone calls, writing appeals, blahblahblah. This process is almost as painful as the chemo. I think I will frame the one with six figures.......

GOOD LABS

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

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.

HAND IN HAND

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, drainage, and wrapping. I did ask how this happened and the doc told me, "She had it in her gut." Although it never showed up in the blood cultures, (is was confirmed with the skin biopsy)"We are treating it like it is because of her symptoms."

Primary's has a great Immune Compromised Unit. It is quite large compared to Oakland, but with many similarities. I was able to meet some Moms of other patients in similar situations. Of course Kristin was the oldest, but we all shared that common bond. I am sure she is feeling awkward in pediatric hospitals. I can see the doctors and nurses who are adept in caring for adolescents and those who are not. It is very evident and I know she senses this. Maybe it is time to find someone who specializes in young adult hematology/oncology while she is there.......

My long time friend, and I mean back to 9th grade, Delores picked me up from the apartment and took me to the airport. It was so good to see her. Amazing how that is. Thank you so much dear friend. I will always love you!

It will be nice to sleep in my bed tonight. Wyatt has stayed by my side all afternoon. I am glad to have him there. I think the boys survived on cereal and eggs while I was away. So, no doubt they will be hankerin' for a nice warm meal....mmmm chili should do the trick.

Finally, I am grateful for the power of medicine, hope and prayer. There is not a doubt in my mind the three work together, intricately, and hand in hand. Although this is not the life I envisioned for my daughter, it is, none-the-less. I have put it all in Heavenly Father's hands. Then again, isn't everything?

IS THERE SUCH A THING?

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 ANC of O, zip, nada, zilch! Home yes, but not without fanfare. Remember the PICC line that was inserted yesterday? I know I did not elaborate yesterday, but it was decided that it would be best for Kristin to have this procedure done. Her veins were shot and she could not tolerate any more of the meds, not even a saline flush in any of the three iv's that had been already been inserted. Every flush, and antibiotic infusion brought pain and tears. Since she was going to need buckets of antibiotics the docs decided to insert a PICC line. This way she could go home with the iv antibiotics. If not, she would need to stay in the hospital for at least another week. So, back to business..... What the heck is a PICC line? As per the acronym, it is a peripherally inserted central catheter. It was proposed that it would be done under conscious sedation. Just the thought of the procedure made her very, very nervous as this kind of sedation was an unknown to her. No OR nor general anesthesia! She could not imagine being able to be calm enough for such a task. Honestly, I would feel the same way. We put headphones on her and then she was given Versed and Fentanyl. These good guys induced an altered state of awareness. After the room and vicitm were carefully prepped, she blissfully drifted into the perfect conscious sedation with a sinister, smirkish smile on her face. A thin, long and flexible tube was guided through a large vein in the upper arm via an ultrasound. (Nate got a bit woozie and had to leave the room) It was skillfully directed until it came to rest in the superior vena cava, a large vein in the upper part of the heart. An xray was used to confirm the location. Unlike the broviac catheter she had for a year and a half, this one is inserted into the upper arm. It is ideal for prolonged iv needs and less invasive than other central lines. So, she is home. (Georgia, thank you so very much for taking us home!!!! Have fun in Hawaii and we love you tons) Right at this moment, we are waiting for her home meds and supplies to be delivered to her apartment. She will be using a portable pump for the next week to administer the antibiotcs. A nurse will come to draw labs twice a week. I know, more fun than a college freshman can handle! I will stay here with her until I feel comfortable leaving. Is there such a thing?

JUST A FEW WORDS

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

FIRST THINGS... FIRST

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 that a spider bite contributes to being febrile." She was told to come in when she could, but it isn't "urgent." Well, probably not, but we encouraged her to go sooner than later. Her Grandfather and Claudia picked her up and took her to the ER. During this short time her temp quickly and steadily climbed and showed no signs of backing down. Labs were drawn and her WBC was a whopping .5, not good, and her neutrophil count was a big O, not good either. Consequently, she has been admitted. They did start her on an antiobiotic, whose name eludes my fading memory at the moment, to treat the "thing" on her shoulder. That did not go too well as she had an allergic reaction which called for a healthy dose of benadryl. Right now she is REM-ing in benadryl land per nurse Becky.

All her other counts are stable and that is good news. I am hoping that this is just a consequence from uping her oral chemo to 100%. She just cannot tolerate it. I thought we have been through this before, more than once.! Thank heavens she has recovered from pneumonia. That thought makes me shudder!

That aside, I am grateful that we are dealing with neutropenia and not"you know what." I'll try to update when I have something to update about.

What Faith Can Do

I love the delete key.Just one little tap, and gone are my typos. While it can obliterate all traces of word, it cannot delete much else. Words have been swimming in my head...impossible, strength, fear, humility,scared, prayer, courage, pain, gratitude, abandonment, hope, broken, faith...some of them I wish I could delete. That being said, I could not pen the words to reflect on the last 730 days. Then, I heard this song. It was written beautifully, just as Kristin has lived the last two years. Beautifully! She has shown,"that life is more than what your eyes are seeing." What can your faith do?

Kristin, you are MY hero.

Humbly,
Madre

FOLLOW UP XRAY & SOMETHINGS NEVER CHANGE

Kristin had a follow-up xray and chemo on Thursday. The xray was excellent and it showed no signs of pneumonia. We are thrilled. Labs were drawn, which I have not seen, all I know is her ANC was 3000. Which is good. Although I'm thinking that is too high for maintenance?!? She was given vincristine @ 50% intravenously and continues her daily regime of oral chemo and antibiotics.

Kristin's two year mark quickly approaches. Two years seems to be forever. Ambivalent feelings rise. Gratitude for the fact that we have the priceless privilege of still giving Kristin hugs and kisses. Sadness for the life we use to have.... before leukemia invaded our lives. We will see how I feel on the 17th... I love you all and that will never change.

NO NEWS IS GOOD NEWS, I GUESS

Just a quick up date.
Kristin has returned to P-town and I to Nevada. There have been no fever, just exhaustion, nausea and loss of appetite. We contribute the nausea to the meds and the exhaustion to the pneumonia. The daily chemo evidently should have never been stopped?!? So, she needs to start up on it. She has a follow up with an xray and more chemo this coming Thursday. Mean time, she has not called with any fevers or pain and the hospital has not called with any reports of the labs taken. so, no news is good news.

THIS IS SO NOT FUN

I know, the title is not very good grammar, but if the word fits, write it. Right? As of the last post Kristin was not doing so good. The evening brought some pretty high fevers, some awfully low blood pressure (70/34), difficulty breathing, and all around tense moments. BUT, emphasis on the big BUT, is that she made it through the night just a little worse for wear.

Some test results began to come back. No, it is not a-typical pneumonia (walking pneumonia), negative on the H1N1 or seasonal flu, negative for Legionella, negative for aspergillius, negative for a slew of other viruses and bacterias, negative blood cultures. Levaquin seems to be the antibiotic of choice. The trouble was why is she still having such high fevers? What needed to be ruled out was PCP, pneumocystis carinni pneumonia. This is an opportunistic pneumonia that people with compromised immune systems are susceptible. Leukemia patients are prime targets along with HIV and bone marrow patients. Her xray has shown that both lungs are equally covered with a foggy haze that looked "sparkley". The doctors decided to send her for some lung function tests that would produce some "goo" which they could then test for PCP. The test was exhausting, but Kristin did it. The day was half over and Kristin has not presented with any fevers nor did she need oxygen. Good news! Kristin asked if she could go home. The doctor did not recommend it, but said it was up to her. I was not quite comfortable with her being discharged. Nevertheless, theysaid it was Kristin's decision and let her go around 11:30 that night.

As of now we are waiting for the results of the goo test and she is being treated as if she does have PCP. All chemo is "supposedly" being held while on the thrice daily regime of Bactrim and once daily Levaquin. I was told a doctor would look into it and call today and let me know for sure. No one has called yet. I am spent and am really looking forward to getting off this roller coaster. Although, I am sure Kristin is much more deserving of this title than I.

FRIEND OR FOE

Pneumonia has reared it's ugly head. After three hospital visits, Kristin was finally admitted to Primary's Wednesday with a temp of 105, difficulty breathing and low oxygen saturation rates. Darren booked me on the next available flight and I was here by 4:00. Thank you to Nate and his mom Tamara for their help. I had a feeling it would come down to this or that something was brewing the day before Thanksgiving. Monday was very difficult for me. Panicked phone calls and continued high fevers left me spent. And I not the one with pneumonia. I knew she should not have returned to Provo so soon. After the tears, I decided, for myself, it is easier to be angry than upset. Angry at this all. Angry that this @#$% is so all consuming and invasive, frightening and paralyzing, obscure and mysterious.

Thus far, she has had a CT scan, several blood draws for too many tests I cannot begin to name, and a not so fun saline nasal aspirate. (which had to be repeated making it not so fun x2) She actually did the procedure herself. Impressive. With a few exceptions, she had needed O2 (oxygen) most of yesterday, through the night, and so far this morning. There is no news on the tests to report of yet. The CT scan is to be read this morning also.

Last night was very restless for her with lots of monitors going off for this and that, and coughing. When she was able to sleep, she softly moaned from the pain and difficulty breathing.

The big question, is it viral or bacterial, PCP or Legionella, fungi,friend or foe.....? I am thinking we will put our eggs in the friend basket.

CANNOT WAIT TO HEAR THE FAT LADY SING!

Well, against our better judgement, Kristin returned to Provo on Sunday. Actually she only made it to Bountiful. For the entire drive back she was sporting a not so good fever. Coughing fits made for a tense ride. Poor Nate! Good thing the Nevada Highway patrol was understanding. When they arrived in Bountiful, the cold air literally took her breath away. The Sumbots had her stay there for the night. Thank you! The next day fever still persisted and she went to Primary's for followup. A new xray showed "hazy or foggy" lungs. Saturday they only saw something in the lower left lung which I guess is typical for A-typical pneumonia. ie. walking pneumonia. So, they just said it could be viral or bacterial, we don't know. If it is pneumocystis, she'll get much sicker. mmmm that is comforting. She returned home. Last night we talked and her temp 102.2. She called about an hour later struggling to breathe. I talked her through it and she was fine. Early this morning her temp rose to 103.3 and she was having serious trouble breathing. Lindsey rushed her to Utah Valley Regional ER. I nervously called Pam who happen to be working there. She grabbed the respiratory therapist on her to the ER and they were able to get her some oxygen and take oxygen sat readings right away. More labs, an xray, and waiting. She was sent home with a new antibiotic. I just checked on her and she was doing fine. Hopefully we are over the hump and things will be smooth sailing for now.

Some of the organisms that cause pneumonia are commonly found in the air. The lung's natural defenses normally protect against infection from these organisms, but they sometimes break through these defenses. Since Kristin's defenses are not normal, bacteria, fungi, and viruses, lay in wait for just the right opportunity. Leukemia and all the chemotherapy that goes with it, leave one with a severely weakened immune system. Thus, giving the opportunistic "bugs" an open door to the lungs. Kristin is suppose to be taking Bactrim every weekend to help prevent such infections. When asked if she has been taking it faithfully, her reply left us with no doubt that she has not. Here come the big guns! There will be no more of that because she has been warned that if this happens again, with any of her meds, she will be back here in Reno..going to school..making sure she complies with doctor's orders. I will surely be a nervous Nellie for the next few days until all signs of fever are gone.

Kristin and I were talking about the day we "Hear the Fat Lady sing." AHHHH!, it will be so sweet. I already have the post written in my head and cannot wait.

We are grateful to Lindsey, Pam and the Sumbot family.

thankyouthankyouthankyouthankyouthankyou.:)

the "F" word

So, you immediately thought "fever" correct? Good for you! In cancer world fever is an "f" word,one that tends to put parents on edge. The elusive and slippery fever Kristin had been sporting for the last few days took a jump last night into the "spicey" range, as Kristin called it. Earlier in the day she had mentioned she had trouble catching her breath and it hurt to breathe in and when she coughed. From my observations she had no worrisome cough, no runny nose, good color and seemed to have plenty of energy. I tucked the conversation away. She went to study and did not mention it again. Later in the afternoon our family went up to Tahoe for some family pictures with Nigel. We had great light, but the wind was bitterly cold to say the least. As we were wrapping up and walking back to the car, she had some serious trouble catching her breath. Darren rushed her to the car to warm her up and she seemed fine. Later, a similar scenario, occurred in the car with Nate . We took her temp and it was 103. Darn. Really? Let's see if this thing is working right... (ie. the thermometer) Here, you take your temp...98.7 mmm, seems to be. Try this thermometer...96.7.. Nope, this one is way off...Lets take it again in twenty minutes. . ticktock..103.5! Dang it..that's a spicy fever Mom..I know..I really don't feel too well either and am super tired. I'll call Oakland.. we were sent to Renown where Kristin was warmly greeted by nurses Jess and Janet. (some favorites) and a doctor with a great bedside manner. Labs and an x-ray later revealed Pneumonia. Although I was surprised by the declaration, I was very relieved that this is all it was. So, some iv antibiotics, a prescription and orders in hand, we landed home by 1:30 a.m. I know, always on the weekend, always at night, and always when our docs are out of town. Like I said before...an inconvenient truth. Aside from the sarcasm, I am grateful for the outstanding and swift care she received and again reminded to count my "many blessings."

WHAT IN THE WORLD IS A BLOOD PATCH?

Saturday night Kristin called and I could tell by the sound of her voice she was not doing so well. She had been studying and when she got up the nagging headache, which has plaqued her for the last nine days, went straight to a 9 on a scale of 1-10. I told her to call Salt Lake. Long story short she had a procedure for an epidural blood patch mid morning Sunday. Aside from being groggy from whatever it was they gave her and some discomfort, her headache is gone. It was difficult for us to not be there to say the least. I knew she would be scared and she was. Many thank yous to the Sumbot family for a blessing,comforting her, and evidently, a fabulous dinner.

An epidural blood patch is an injection of your own blood into the epidural space. The epidural space is not an injection into the spinal cord itself. The spinal cord and spinal nerves are in a “sack” containing clear fluid (cerebrospinal fluid). The area outside this “sack” is called the epidural space. An injection of the freshly drawn blood into the space "plugs the leak"and VOILA, the headache goes away! (Yes, Kathy, you nailed that one!)A small number of patients will experience a severe headache after an LP like Kristin had. The headache is usually worse with standing and better when lying down. This is due to a persistent leak of spinal fluid into the epidural space. Although the headache itself is harmless, it can be very severe and very debilitating and this was how it was for her. It was a very difficult week at school to say the least. She went to urgent care earlier in the week and talked to Connie. The consensus was that she had the flu. For relief, she took pain meds and tried to lay down as much as possible. Tylenol and Excedrin just didn't cut it. Kristin has avoided taking pain meds as she does not like how they make her feel. For her to be taking narcotics tells us this was more than the flu. At the end of the day, the headache has vanished and all seems to be well. Isn't modern medicine amazing!

CHEMO IS SUCH A HEADACHE!

Since Kristin's return to "P-Town" she has been plagued with a whooping headache and vacillating blood sugars. The headache got the best of her yesterday as she called me in tears frustrated that she cannot get any relief. She did end up taking some powerful pain meds, but not before suffering for the past three days. It has been very difficult to concentrate on school and even go to classes, finish assignments and take tests that have already been delayed. She keeps trying her best though. The 5 day pulse of prednisone is done with so this should squash the blood sugar issue. I am praying that today, and the ones to follow, will see some welcome improvement.

As always, we count each and every blessing. Always giving thanks to our Father in Heaven that Kristin continues positively, ever closer, to her stop chemo day in April.