Tuesday, February 26, 2013
Monday, September 10, 2012
Cancer Survivor hiking Himalayas to raise awareness
Wednesday, May 2, 2012
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!
Thursday, December 22, 2011
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,
Saturday, October 15, 2011
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.
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.
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.
Tuesday, July 27, 2010
Sunday, July 25, 2010
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.
Wednesday, July 14, 2010
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.
WBC 5.2 HGB 14.7 PLATELETS 202 ANC 3000 absolutely beautiful!
Sunday, June 13, 2010
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.
Friday, April 30, 2010
Wednesday, April 14, 2010
Connie, Kristin, Dr. Raphael, Tia, and Sandy
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.
Thursday, April 8, 2010
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.
Tuesday, April 6, 2010
Monday, April 5, 2010
Sunday, April 4, 2010
ps I have a special post ready for Thursday morning....can't wait.
Friday, March 26, 2010
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,
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.
Thursday, March 11, 2010
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.
Saturday, February 27, 2010
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.
Friday, February 19, 2010
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%.
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
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.
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.......
Thursday, January 28, 2010
As always, your love, support and concern are appreciated more than you will ever, ever know!
Saturday, January 16, 2010
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-
Thursday, January 7, 2010
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?
Tuesday, January 5, 2010
Monday, January 4, 2010
Saturday, January 2, 2010
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.
Wednesday, December 16, 2009
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.
Saturday, December 12, 2009
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.
Monday, December 7, 2009
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.
Saturday, December 5, 2009
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.
Thursday, December 3, 2009
Tuesday, December 1, 2009
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.
Sunday, November 29, 2009
Sunday, November 22, 2009
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!
Wednesday, November 18, 2009
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.