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.

A VISIT AND CHEMO

Kristin came into town on Wednesday night, Nov. 11, to prepare for a LP with intrathecal methotrexate. Personally, I was thrilled to have her home and could not wait to spend time with her, hold her, take in her sweetness, watch movies, you get the idea. Thursday morning came and I wanted to make her favorite homemade mac n'cheese, Bobby Flay style, so it would be ready when we got home that afternoon. She wanted to go to Galena to say hi to some teachers. Around noon we went to Renown. Kristin was greeted with hugs and then more hugs. They are always so good to her! The LP went smoothly. during the procedure, CNS fluid (centeral nervous system fluid) specimens are always drawn for evaluation and then methotrexate is given directly into the spinal fluid. I have not heard anything regarding the labs on the CNS fluid, so in this case no news is good news. The most recent labs were "glowing." So much so that her meds have now been raised to 100%. Remember, that since her counts had dropped too low a few times, the daily chemo regime she has been on was reduced so that counts can recover and stay in the desired and optimal range. This is per the protocol she is on. That evening Darren brought home a movie that we all enjoyed together, just like the good ol' times. Friday Kristin felt a bit better but I could tell she had been knocked down a notch or two. The notorious chemo headache, sore back and "not such a good feeling" in the stomach all seemed to rear their heads. Saturday seemed to fit this description also, but she certainly tried her best.

Visting Reno was bitter sweet to say the least. There needs to be time to heal all the wounds of this experience, process them, put them in their proper place, and continue on LIVING HAPPY as best as possible. I have no doubt she will shine through them beautifully, full of grace, and triumphant.

thank you for the loving prayers for her all our loved ones who walk through these trials,

CATCHING UP

visiting Kristin, it was great!

It has been a while since I have "picked up the pen and paper." Kristin is doing well. The family went to Utah as part of Eric's Bday and to visit Kristin. It was great! Darren commented,"Well Kristin, you look like you are pretty happy and that you have arrived at a good place." Her reply, "Oh man, I am in such a good place!" I had the chance to visit her classes, met friends and roomates and take notes in chemistry....Every where we went she was saying hello to someone and introducing me to friends. Of course there are a few "Hiccups" with her health, but that is to be expected. We all know things could be worse.

Our visit with the rheumatologist was un-enlightening.....really. Nerve damage to say the least. And is it permanent?....we just do not know..... Yes, I think un-enlightening would be the correct verb here. Although is it a verb, and adjective or adverb and did I even spell it correctly?

All that aside, we are grateful for the yet another year. Labs are good, no infections, transfusions, fevers or rashes. This is good stuff. Looking back at this time last year frightens me and I surely count our blessings. I thank my Father in Heaven each and every day for friends, family and miracles he has sent to us. You are all a part of this and it is humbling.

Kristin comes home next week for an LP with intrathecal methotrexate and vincristine. yum-o!

IT WAS JUST A TEXT...

While getting ready for the day, I noticed an unread text message on my phone. It had come around 10:30 the night before, well past my bed time. It read, "I think I'm coming down with something." Gasp, exhale and then Gasp once more! Those were the foreboding words Kristin had spoken to me about two weeks before she was initially diagnosed. At 6:00 in the morning, the day was still young. My mind had already gone through a very complicated to do list of who to call, arrangements to be made, & items to pack in a matter of minutes. While in the warmth of the shower, my mind went back to earlier conversations with Kristin during the week. She had mentioned she felt like she was coming down with a cold. A cold? That was certainly do-able. My hurried mind sighed and then relaxed. "It is probably just a cold Leslie....she's fine." Darren, never one to panic, echoed the sentiment.I drew from the comfort of blessings and promises she has been given and tucked my worries away.

Yes, she has a whopper of a cold. She's allowed to have a cold. The night she sent that text, she was shivering with a little fever. I felt so bad to have not gotten the message until the morning. We all know what that freshman year is like. Late nights, not eating right, burning the candle at both ends. It has caught up with her for sure. I know that all parents living with childhood cancer, or anyone with cancer for that matter, know all too well, life can take an unwelcoming, uninvited turn, without a moments notice. Even if it is just a text!

Labs were done and all is well. There are no autoimmune disorders that could have been contributing to the feet issues. This is good news. Although the ANC (absolute neutrophil count) is up, meds will not be increased until the next clinic visit. As for seeing the rheumatolgists, that has been difficult. I was able to make an appointment for January. Yep. January....So, I asked the nurse at Primary's to see if they could get her in sooner; as per the request from the rheumatolgists scheduler, by having them call their office. The nurse's comment was, "I don't think I want to get in the middle of that. That is something we don't do. I'll leave a message with Dr. Wright to see if she wants to do that." Really ????? #$*! I couldn't believe she was telling me this. She also said,"Well, it is just Raynaud's isn't it?" Just Raynauds? I don't know,...purple feet, swollen, ice cold to the touch all the time, toes that bleed for no reason? Really, you tell me if you think it is just Raynaud's and if you would be content to brush it off ? How about if it were your child and she was in pain all the time with toes so purple they looked black, and every step was difficult???? Give me a break! I waited all week for Primary's to call back, left two other messages...no such luck. Meantime Connie Goes (from Oakland, we love her as she is very knowledgeable and understands Kristin so well) called and gave us the lowdown on the recent labs and again expressed her concern about the feet. So, after being frustrating with Primary's, I left a message with the specialists MA asking if they could squeeze her in earlier. Then, Friday afternoon, the rheumatolgist's office called and said they could see her on Oct. 29. Great! Until then, Connie has started her on amlodipine, a calcium channel blocker that helps with blood vessel conditions.I'm curious to see how it helps and pray that this condition is only temporary.

Well, that's all folks. Love to you all and thank you so very much for all the continued prayers. Please remember everyone who has been touched by cancer as there are way too many and there are never enough prayers!

GETTING TO THE "FOOT OF THE MATTER"

I received a call from Connie Goes last week saying they are concerned about Kristin's feet and were ordering a slew (is that the correct spelling?) of tests. The next rounds of vincristine would be held for possibly 1-3 months to give her feet time to heal. FINALLY! I spent many hours reading and researching Raynauds, vasculitis, cryoglobulins, acral ulcers, perniosis, blahblahblah......There can be many contributing factors, but I am pretty sure her's is chemotherapy/leukemia related. So, yesterday she went to the health center to have blood drawn to begin the process. I will keep you posted.

In the mean time, she has been invited to go to Disney Land with a "friend's" family. We are still debating the issue. Then again, she is 19 and technically does not need our permission, but being the good girl that she is she has asked our permission. I would certainly want to go if it were me. I guess it is all the "what if's" that I have a hard time with. Let's have a vote!

A DAY AT THE LAKE

Here is a short slide show I created when we took the family and some of their friends out to Pryamid Lake. This was a special day for Darren and I with all the memories to take with us. The day was perfect, (except for the fact that Eric had to work)great water, we had the lake practically all to ourselves, no wind, friends, and loads of oooooos and ahhhhhhs. Along for the ride were Robbie LaRovere, Brandon Daniels, and Sam Foote. Just turn up your volume and click play.



Enjoy the show!



As an update on Kristin, she is feeling the stress of classes complicated by the infusion of vincristine she received. Top it off with prednisone and you have a frustrated freshman. We are working on finding someone help with the foot issues. Salt Lake gave two referrals to try. (hmm,I honestly think they just looked in the directory for Provo and randomly the found two rhuematologists who just happened to be in the neighborhood) I called both and they each declined and said this was not something they specialized in. Which was my suspicion to begin with. Figures, as I spent all morning trying to get someone to answer the phone and get more than a receptionist to answer some questions. Finally I called on the physician line and they apologized for not answering. Alas, Kristin trudges through it all and hopes we can find someone who says more than,"That is strange. I've never seen that before!"

SHE IS 19!

Today is Kristin's 19th birthday...The years leave me speechless, grateful, and amazed all at once.  While it is oddly strange to not have her here at home, we are thrilled that she is celebrating another year of Living Happy. 

still wishing Kristin Happy Birthday!

Kristin's clinic visit in Salt Lake went well.  A huge thank you to the lovely Pam and Lindsey Peperone for escorting her.  Her recent labs were outstanding.  In fact they were a bit too outstanding so they have increased her chemo to 75%. Her ANC was over 4100!  WBC 7.1, HGB 13.3, PLATES 22 Dare I say normal?  Lets hope this little 25% increase does not send her counts crashing like last time.  Once again,she has developed the strange bumps on her feet.  I did some research and have found something that fits her symptoms perfectly.  It is called perniosis.  This is caused by the constriction and damage of the small blood vessels(vasculitis) in her feet and how they react to temperature change.  To me it is quite obvious that the blood flow to her feet is restricted.  They are often times red, purple, swollen, loss of feeling, and hot. I have seen her toes spontaneously bleed at times.  I have read about cryoglobulinemia, which is a the presence of abnormal protein in the blood. This could possibly be related to liver function,  Mmmmmm. Cryogobulins are antibodies... They turn solid when there is a drop in temperature. I looked through her last labs to see what her liver functions were, but there was nothing recorded. Does anyone else have any ideas?

I LOVE MY CLASSES!

Kristin left to school last week. She caught a ride with the famously notorious AJ Hames and arrived on campus at the beginning of the week. Her last clinic visit went well and it did not seem to hold her back at all. Labs are to be drawn next week so I am anxious to see how she is responding to the higher doses of chemo and the methotrexate she received during the lumbar puncture.

I wanted to share this cartoon with you. The cartoon evolved from an assignment about her freshman year experience. Notice the similiar physical attributes? I loved it and hope you do to.

AND I WILL EASE THE BURDENS....

As I was reading the scriptures, I have felt captivated by the following verse. Finding myself drawn to reread it many times, I felt I should post it on the blog. I have found great reassurance and trust in these words, they tell me that my cries and prayers fall upon the ears of a loving Father in Heaven. I know Kristin expresses this sentiment also as she has voiced it many times. Her faith and patience is a light that shines for me as she submits with great patience to the will of our Father.Although prayers are not always answered MY way, the burden upon my shoulders is more often than not, lightened and this load is not so heavy.

"And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of surety that I, the Lord God, do visit my people in their afflictions." mosiah 24:14

"WHOA... WE THOUGHT THAT WAS YOUR HEAD SPINNING AROUND!"

We were anxious to hear all about Kristin's freshman adventures, the people and new friends she has made, and all those first year escapades. This one is hilarious and I thought I would share it with all of you.

" We were all sitting on the couch watching a movie and this guy next to me kept touching my hair. Well, I had my wig on and he did not know about it. He repeatedly said how nice and unreal it felt. So, I casually put my hand on top of the wig and started to spin it around and said, "Actually it is unreal...." The guys in the room freaked out and jumped off the couch shouting, "Whoa!" I explained the hair thing and relieved they said "Man, we thought that was your head spinning around!"

YOU SAY GOODBYE AND I SAY HELLO

Well, Kristin has come and gone.....but our family loved every minute that we had with her. We anxiously awaited her arrival and the hugs felt oh so good! While she was here, she loved sleeping in her own bed, visting friends, having home cooked meals, wakeboarding. Her visit to the Renown Speciality Clinic went well. She had an LP with intrathecal methotrexate. Her meds were kicked up a notch because her counts have come up. They are ANC2322, WBC 5.4 HGB 13.3, PLATES 237.WOW!! She has not had those kind of numbers for a long time. So, she is now taking her daily meds at 50% which are mercaptopurine (affectionately called 6mp), prednisone, once weekly methotrexate, and weekend bactrim. I am hoping that she does not experience the myleosuppression(blood cell production suppression) issues she had this summer.It was very good to see Dr. Raphael, Tia, and Sandy. We were sad to have missed Connie, but I do believe I am having pancakes with her at the Childhood Cancer Awareness Day in September. Her next visit is in September in Salt Lake.

I will say that I loved hearing her bathroom door creak in the middle of the night, breathing in her yummy perfume, hugging her just because and rubbing her head while watching a movie. I cherish these moments so much. I guess we all should as I know there are many parents who would give everything for these moments. Do not let these moments pass as they are what truely matters!

I LOVE YOU

"its the sign for 'i love you'. my friend aubrey bought be new pencils and she is always flashing this sign around so i drew this for her. she also has a stage four brain tumor...


like it?


show dad :)"


Kristin sent this text to me and I was moved....

A GOOD WEEK

Kristin's visit to Salt Lake with her grandfather was uneventful and that is a good thing. Her ANC was 1700 which is a very good thing. She has not had those kind of numbers for a very long time, actually since they increased her meds by 1/2 of a pill way back when. She is now back on all other meds. I am hoping that her counts will not be so suppressed in the future and these neutropenic episodes will be a thing of the past. As expected, Kristin has not felt well, especially since the infusion on Tuesday. She has started her 5 days of prednisone which leaves her with painful heartburn, an insatiable appetite and feeling awful. After staying home on Wednesday to rest and recover she spent a marathon of hours doing homework in the library. We are counting down the days until she comes home on August 14 and so is she. We get texts like, "I'm tired of eating out of a box, I miss you so much, Someone ate my Oreo's...." Ahh, the good ol' days of college!

"WHAT'S UP?," YOU SAY...

Hello friends,

You have to LOVE technology! Without cell phones, text, fax, and the Internet, I know that we would never have been able to let Kristin be so far away. When Kristin was having the strange blisters on her feet, she was able to instantly send pictures over the phone. And, when we were dealing with the shingles, I was able to take pictures for Dr. Raphael who then forwarded them to Dr. Torkelson in Oakland. I called the student health center the other day and was able to have her lab report in front of me in a matter of minutes via fabulous faxing. Through facebook, I can catch a glimpse of the pictures Kristin posts of her new friends and their shenanigans. It is hard to let her go, but how could we not? "Living life" is what cancer patients need to do. Not "living sick." Does that make sense? So, with all the communication technology at my finger tips, it makes letting her go just a little easier.

Anyway, this week has been quiet. No fever, rash, etc. She has been off her meds for a while. Yes, that makes me very nervous. It is easy to say I will worry when they tell me to, but it is harder put those words into action. Everyday I hold my breath knowing that eventually I have to exhale. mmmmm,I wonder when that will be... Next week she has another appointment in Salt Lake. Hopefully it will be smooth sailing.

THANK YOU EVERYONE FOR YOUR KIND WORDS.THEY MAKE THIS JOURNEY NOT SO LONELY.

THANKS FOR FOLLOWING THROUGH, FINALLY

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

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

news flash..."STRANGE RASH & NEUTROPENIA STRIKES FRESHMAN COED, GROUNDED IN PROVO, UTAH!"

BYU freshman, Kristin Katich, reported an odd rash on top of both feet and ankles. What appeared to be large hives seems to have alluded and perplexed the urgent care doctor, Bill Grayden, of Provo, Utah. Dr. Grayden drew labs after examining the suspicious bumps. They did not appear to be shingles. Kristin has complained that the pesky rash has spread to sides and bottom of her feet making it difficult and painful to walk. Tests revealed a dangerously low neutrophil count leaving Kristin neutropenic and susceptible to fever and infection. ANC 290, PLATES 239, HGB 12.0, WBC 1. Her parents question if the rash could be connected to the low counts and hope that it is not a sign of something more serious brewing. Sadly this episode has put a serious caboche on big plans for the weekend and Kristin was unable to attend the highly anticipated campus shin-dig. After consulting with Primary Children's oncologist, Kristin was banished to her lone apartment to reduce the chances of contracting a serious illness. All medications have been stopped so that counts can recover. Kristin reports,"I'm just depressed that everybody else had a good time and I have to stay at home as always, but who is complaining? Haha!" Her parents are reported to be guarded, tense, and hope for improvement to be forthcoming. Mom has her bags close to the door just in case....

KRISTIN'S PERSONAL NARRATIVE

Kristin Katich
Professor Harrison
ENGL 150
29 June 2009
The Stranger in the Mirror

It seemed like every classroom I had been in as a child, all the teachers would have the same inspirational posters hung on the walls. Like the one with the kitten hanging in the tree that says, "Hang in there!" Or the one with the cute little puppy that says, "Attitude is everything!" I had never given these posters much thought, except that they were something to look at while day dreaming during class. Eventually they weeded themselves into my mind, and little did I know they would have a huge impact on my life.
It was raining that day, and I had been feeling unusually tired. My mom had let me stay home from school so I could rest, but just as a precaution we went to the doctor. He assumed that I had mono and asked me to go get some blood work done. I did not think anything of what the results would be as I laid there. My mom announced that she would be leaving for an hour or two to go on an errand with my dad. I was anticipating that tomorrow would just be another nothing-out-of-the-ordinary day, so why not enjoy my time off. I sat peacefully in bed, listening to the quiet pitter patter of the rain against the window pane until I drifted into a light sleep. A knock on my bedroom door ended my mid-morning nap. My mom and dad seemed hesitant as they came in and sat on my bed. "Hey baby girl, how are you feeling?" they asked. I yawned and told them of my snooze-fest. My dad then pulled me into a tight embrace, and my mother started to cry.
"We were at the doctors office," my dad explained. "You don't have mono."
Tears rolled down his cheeks. Mom was under the covers with me now with her head on my shoulder. "You have leukemia."
My heart stopped beating and the world at that moment stood still. Those kinds of things only happen to people in soap operas or to distant relatives you never see. Not a normal teenage girl. Not to me. People with cancer get really sick and cannot go to school. People with cancer lose their hair and get really skinny, and some people that get diagnosed with it even die.
The only thing I could say was, "I don't want to have cancer."
Life was a whirlwind after that day. I was swept off into an unknown territory and given a one way ticket to chaos. Those first few months in the hospital seemed like an eternity. I spent them spiraling into a state of denial, living them in a haze. The doctors would come into my room and rattle off about medicines to my parents, but I would not listen. The nurses would take my temperature; I could care less what it was. Something like this was hard to wrap one's mind around. I could not come face to face with what was happening, and I desperately wanted it to be an impossible nightmare that I would just wake up from. Food soon lost its appeal and I became thin and weak. Getting out of bed would leave mounds of my long dark hair behind. I could run my fingers over my scalp and end up with handfuls of my beloved locks that brought tears to my eyes.
I stood in front of the mirror one morning, unable to recognize the stranger staring back at me. She had a patchy bald head and bony cheeks. Tear tracks marked their way from her red, rounded eyes. The person looking back at me had lost it. I looked pitiful. Disgusted with what I had become, I then decided this could go on no longer. Continuing to be that stranger in the mirror would get me nowhere. I fell to my knees and prayed. I prayed to the Lord for help. Immediately, I received strength I did not know I had. I was blessed with comfort, and also got the sense that I should be patient, for all have trials to bear, which is never an easy task.
Lance Armstrong's motto is to "Live Strong." Give me a break, that is almost impossible to do when you have been hit by the chemo bus. I chose the opposite of my current state. I chose "Live Happy." That motto gave me a sense of hope. Instead of focusing on the fact that my hair was falling out, I looked forward to the day it would grow back and even wore a blonde wig. Honestly, blondes do not have more fun. My doctors were astonished at how well I was responding to treatment. The nursing staff announced that I was the healthiest cancer kid on the floor of the hospital one day. Never before had I appreciated something so simple as being able to brush my teeth without getting tired. By opening my mind and my heart I was able to feel the love others were giving me to help me through this. This gave me a chance to look forward to my future, instead of living in the moment. Because, right then the moment really stunk.
My life was never the same; I saw it in a new light. Now things seem brighter, times seem easier, even though I have never had a normal day since. But, who would want to be normal anyway? Yes, cancer takes and takes. One thing it could not take was my attitude. I never gave up. I am a cancer babe, and I make it look good.

GRADUATION PICTURES

What a year, what an accomplishment!

thank you Mr. Brown

on the jumbo tron....where's the cap?



so happy to walk the walk!


"What lies behind us,
and what lies before us,
are tiny matters
compared to what lies
inside of us."

CHEMO & COLLEGE

Yesterday Kristin went to Primary Children's Hospital in Salt Lake City for her vincristine iv push. Good friends Pam and Lindsay Peperone were gracious to accompany her. Lindsay is actually Kristin's roommate for the fall and winter. (This in itself is a heartwarming story that I will post soon.) Since Kristin's veins have been destroyed by the iv acyclovir, trying to find a good proved difficult. After a few futile attempts, a specialist was called in and they found success. Ironically it was the vein that she told them they should use in the first place. go figure.... She still continues with daily regime of meds as before just on a lighter dose because of her counts falling. I am sure this will be adjusted as they always are so happy to give her the maximum possible, humanly consumable, most toxic dose tolerated. All in all she said everyone was very kind and welcoming. I of course, tried to get the play by play through texting and phone. Later in the evening she sounded "chemo-ed!" Friday will be spent curled up in bed resting. I told her I kept on imagining her tucked into my bed, rubbing her head, and telling the boys to be quiet. I miss her so.....

THIS IS NOT HIGH SCHOOL

Last Thursday Kristin was discharged from the hospital after the lovely shingles' episode. The rapidly growing monsters responded well to the iv meds, fever was resolved and blood pressure eventually stabilized. I am not sure if she grasped the magnitude of the situation as she was so focused on getting out and on her way to BYU. Honestly, I cannot blame her one bit nor did anyone else. But, when the doctor goes from we will take this day by day to hour by hour, you just do that...Thankfully, hour by hour was gracious to her and she was finally released. I will add that it was not without myself and Doctor Raphael being in the dog house for holding her hostage!

Once she made it home, she focused on packing for school. We were on the road by 4:00. Luckily she had gotten a lot done the previous week which was very helpful. We decided to drive to picturesque Wendover and stay the night there. She was so anxious to get there and asked, "Can't we just drive all night?" We were exhausted from all the drama and said no. What did matter was arriving for new student orientation Friday morning. That is exactly what happened and her parents were bright eyed and bushy tailed to boot!!! After all the customary speeches, photo taking, breakout sessions, etc., we checked her into the Wyview apartments. I must say that BYU is a beautiful campus and everyone was extremely helpful. The apartment complex is immaculate and well cared for. Her roomates were nice, we were glad.

Kristin is thrilled beyond words to be there and so are we. I will keep everyone posted.

UPDATE

What a long day.........here is the lowdown on today's events.
1. no fever since last night
2. started third iv line as the acyclovir is unmercifully harsh on the veins
3. blood pressure running on the low side, too low for Dr. Raphael's liking
4. shingles continue to respond well to meds and do not appear so red & angry
5. nothing to report on the blood cultures...this is good
6. labs are nice and stable and this is good too
7. handling pain well, I mean very, very well
8. emotionally drained over the whole situation and desperately wants to be released
9. she is ready for a shower
10. I will leave this one up to your imagination ...%@#&!



Big Thank yous to Melissa Daniels and Kerri Hansen for taking the boys. I am so grateful. Kristin appreciates your comments so keep them coming.

CANCER, THE REAL INCONVIENT TRUTH!

I have just returned from the hospital where Kristin has been the last two days. She has contracted a beastly case of shingles! I know, shingles....could the timing be any worse? Last week a little itch on the back grew to a rash that is now covering her back right shoulder, under the arm and across the chest. By Monday morning I knew they should be looked at as they were progressively getting worse. As shingles run along a nerve, hers are misbehaving and tending to spread out. Which can happen when one is immune compromised. Much to Kristin's disappointment, Dr. Raphael acted quickly and admitted her. Shingles in someone with a weakend immune system is quite serious as it can spread internally to the lungs and liver. He said the timing of this is no coincidence. She is being treated with iv acyclovir and has had four rounds thus far. As for pain, they bother her when they are touched and has break through pain now and again. From my observation she seems to handling the pain quite well. thank heavens! The itching seems to be quite bothersome though. Emotionally this is very trying for her. But, as of this evening she has been so "out of it" she does not care. We will see what tomorrow brings. right now, it is one day at a time. Throughout the afternoon she was sporting a fever from 100-103.5. This meant drawing cultures and that usually means another 72 hours!!! Geez, we were suppose to take her to Provo this Thursday. I am thinking that cancer is the real inconvient truth Al Gore!


on that sarcastic note... I am once again humbled beyond words to be so very grateful to live in a time when Kristin can be treated with the very best medical care. To have the faith to be able to look forward to more healthier days. Even though we have not yet arrived at those unseen days, we hold onto to this knowledge knowing they will be forth coming . This faith gives us hope, helps me to comfort Kristin, and literally gives me the strength to continue on each day. I have never doubted this since the very beginning. As always & warmly, Leslie

NEW LABS

Yesterday labs were drawn as our doctors wanted to repeat them one more time before Kristin leaves for school. The phone rang around 8:30 and I saw that it was from Renown. I knew immediately that something was up with her labs...let me take that back. Something was down with her labs, specifically her ANC. (the absolute neutrophil count=the number of bacteria fighting white blood cells) Sandy Payne reported that her ANC was 168! Yikes..remember the goal during maintenance is to keep the ANC hoovering around 1000-2000. The other counts we look at regularly are WBC 1.2, PLATELETS 256, HGB 12.7. The plates and hgb are nice and stable, just the way we like them. I have been a suspicious, for two months now, that we needed to tweek the meds a bit. I have felt that her counts have been suppressed just a little too much. What does this all mean. Stay away from sick people!!!! don't get any fever, hold all meds and until we repeat labs on Monday. So, if you are visiting the house please leave your germs at home.

Meanwhile, Kristin is busy getting ready for BYU, (We leave on June 17) writing graduation thank you's and finalizing all scholarship requirements.

Wyatt has been playing in the end of the season Little League tournament and his team has been doing quite well. Unfortunately he rolled his ankle running after a ball. When we got home he said,"Excuse me, but should my foot be pointing this way?" After an x-ray, Dr. Mathis confirmed that it was indeed broken. The break is on the 5th metatarsal where the ligament connects to the bone. It is the most common break when you roll your ankle. Needless to say Wyatt was thrilled with the idea of crutches and his boot. But, the excitement quickly dissipated and now he just cannot do much of anything...silly boy.

Thank you for your kindness, prayers, and support,
Leslie

GRADUATION MOVIE

Today is Kristin's graduation....yes, I am feeling a bit blue. This is a slide slide I put together for our family graduation party. I promise to post grad photos later. Enjoy the years, heaven knows I have. (just click the play button and turn up your volume.)

GALENA HIGH SCHOOL AWARDS NIGHT

This is Vicki Woodring. The scholarship was established in honor of her son.

We recently attended the GHS awards night. It was held at the Atlantis courtesy of the Farahi family. Mr. Farahi said,"Your daughter has class." Thank you Mr. Farahi, I have to agree. And, may I add that there were many other young people there that fit the description as well. Kristin was the lucky recipient of the Ricky Woodring Memorial Scholarship, the Michelle Cox Memorial Scholarship and the Galena High School General Scholarship! It was a lovely evening. The following is an email we received from the wonderful Dan Dugan the next day. Dan is a champion for the cause. He summed the evening up pretty well and I will leave you with his kind and thoughtful words.

Katich Family:

I want to tell you all again that no matter how many awards or what types of awards all the other kids got last night, the fact that Kristin was there to collect hers meant more to me than any of the others.
You remain my heroes.

Dan

We are grateful to Galena's scholarship committee for their consideration on Kristin's behalf. The money Kristin received will help her achieve the dream of becoming a nurse. Galena has been instrumental and indispensable in helping Kristin through her turbulent junior and senior year. Without their support, thoughtfulness, empathy, and compassion, graduation would have been next to impossible. School for the critically ill child is about the last thing the patient or their parent should need to fret about. The issues for educating children with cancer can be complex. Because of thorough planning and communication on the school's part, Kristin was able to complete her requirements and graduate. Tests were delayed or modified, homework was often waived, projects were individualized, deadlines delayed, absences were overlooked, a key was given to enter into other doors closer to the parking lot her so she did not have to walk so far, she had a revolving nurse's pass to go rest, take temperatures,call home or just throw-up, and so much more. It took some very well loved teachers to help this child graduate and to them we are forever grateful. Karen Cox, Andrew Haas, Mandy Campbell, Tom Maurer, Tom Brown,Dave Huffmeyer, Kay Horner, Amy Johnson, Nicolette Smith, Ms. Yau,...People like you will never be forgotten. Thank You for your compassion, goodness, and kindness!

LETTER TO CONGRESS

Harry Reid June 2, 2009
Senate Majority Leader
United States Senate
528 Hart Senate Building
Washington, D.C. 20515

I could never have imagined myself in this position. If it could happen to our family, it could happen to you too.

Sadly, on December 17, 2007, our intelligent, intuitive, athletic, beautiful daughter was diagnosed with Acute Lymphoblastic Leukemia. Kristin was just seventeen. She had begun her junior year of high school with all the enthusiasm a smart and active child could possibly possess. While in the throws of building homecoming floats, running cross country races, and life, Kristin stated, “I feel like I am coming down with something.” Little did we know just how wicked that something was.

This diagnosis would certainly have been a death sentence for children a few, not too distant, decades ago. That could have possibly been some of you who are reading this letter. Look around. Imagine your congress twenty years into the future. Are there empty chairs, voids, and echoes?

When we fail to recognize the magnitude and importance of funding childhood cancer research, we pay a dreadfully high price. Simply put, lives are lost. Their void is apparent as the sun failing to rise to their families. The collective promises their precious lives could have contributed to our great country will forever be unknown.

Undeniably, much progress has been made. But… children with cancer need us to do more. We all know what “more” means. Each and everyone of us does. When scientists, and doctors, parents and politicians, all work closely together; with a driven desire in the pursuit of curing the child, answers are discovered. There is a faster transition from research to bedside. Collaborative efforts free bottle necking of information. Lessons learned can be applied to treating other cancers.

“More” cannot be done without research funds. It is as simple as that. With the explosion of information and technology, we are standing on the threshold of a pivotal junction. Let us not lose the footing gained by our dedicated scientists and doctors. Please care enough to give more generously so that children may be blessed with the promise of growing old.

Sincerely and Passionately,
Leslie and Darren Katich

p.s. We are happy to report, that as of this date, Kristin does have the promise of growing old thanks to the science of modern medicine.

LP'S, LABS, & HUGS

Kristin and Tia Speirs in the new wing of Renown's new Children's Hospital. She was the second patient to recover in the room. It is beautiful.

Kristin had labs done Tuesday in preparation for her clinic visit on Thursday. Her counts, particulary the ANC needs to be above 750 in order to proceed. Maintenance consists for cycles of 84 days of meds beginning with an LP and intrathecal methotrexate on day 1. This is repeated until she reaches the one year mark of beginning maintenance which should be approximately April 2010. (umm, I think that is correct) She just completed the first 84 days. Hot Dog! I called to get lab results on Wednesday. HGB 13.7, WBC 1.7, PLATELETS were clumped so they could not be calculated! That is a mistake on LabCorps part and has nothings to do with Leukemia. Her ANC was 680. What does all this mean? So close, but no chemo unless counts come up..... So, the plan was to have Kristin go back to LabCorp and repeat labs as early the next morning as possible. A stat order was sent over the day before so all would be ready because anesthesia, doctors, pharmacy would be needing to know if her counts had come up enough to proceed. Kristin got to LabCorp at 7:40 and had to wait for an hour to be called back to have blood drawn! Then, they said there was not an order for a stat cbc!!!! I don't think so...I am not at all surprised by this at all. Nurse Tia asserted her inner Super Nurse and told them to get on it because yes they did have the order and they needed to get this done asap. You go Tia! Well, of course they found it and her blood was drawn. The results were just good enough to have chemo and proceed with the next 84 day cycle. The new results were ANC 840, WBC 1.5, HGB 12.9, PLATES 282. I still feel they need to reduce the 6mp just a hair because it sure looks like it supressing her counts just a wee bit to me, but what do I know?

The day ended with an LP with methotrexate,(thanks Dr. Lasko) they also drew spinal fluid for testing, vincristin intravenously, a yummy sandwich courtesy Dr. Hastings, and hugs from Tia!

As always, with all my gratitude, Leslie

OUCH! FRIEND, CAN YOU SPARE A BANDAID?

Early, I mean very early yesterday morning, Kristin woke us up to say she wanted to go running. In my sleepy head, I was thinking she should go to the gym instead and did not voice my thoughts. So, off she went without a thought and I regreting I had not spoken up. An hour later she returned with two very bloody knees and hands.The pained look on her face said it all.Ouch! With blood dripping down her legs, I put her in the shower to carefully cleanse the dirt filled wounds with soapy water. The best part of the story is that she was proud of herself for running an entire mile without stopping. Being happy for her was a given, but I did recommend that she stick to the gym until she is more stable and the effects of vincristin have worn off. Chemo has been a ravenous wolf on Kristin's body. She has worked very hard at reclaiming what Leukemia has taken from her. She is bound and determined to claim her former strength, muscle tone, and agility. I say, GO GO GO SPECIAL K!

PROM 2009

Linda, thanks for entrusting the car to Darren!

Kristin and long time friend, Darren Lasko

Well, prom has come and gone....I guess I am feeling a bit blue and lamenting over the fact that I will not have another opportunity to fuss over Kristin going to school dances. The whole process has been a bit of a bonding experience for us. I recall each dance, dress, flower and hair style clearly. Never the less, I have got some indelible memories that is for sure! Last year it was quite a feat to get off to the dance. It took many of us to make it happen. Reading back to this time last year made me shudder. She was going through so much at that time. I found it amazing that she was even able to get dressed.

McThankyou, Ronald McDonald House

Kristin was the fortunate recipient of a scholarship from the local Ronald McDonald House. The well planned and anticipated event was held at The Sienna. We are indebted & appreciative to our community for working and donating generously to this worthwhile foundation. thank you thank you thank you thank you !!!!

p.s. I read back to where we were last year... yikes! Little did we know just how bad things would get It was a good thing we did not know how wicked the storm really was! What a year it has been.I love to see that smile because she has so much to look forward. Even with another year of chemo, there is still soooooo much to smile about.

CLINIC VISIT

I failed to mention Kristin's last clinic visit the other day. Probably because it was uneventful. She received vincristine in her hand and has started the 5 days of prednisone along with the yummy cocktail of 6-MP, methotrexate and bactrim. Her recent labs are as follows: WBC 1.7, HGB 13, PLATELETS 290, ANC 697. Her anc and wbc are down, but they said that this often happens after a virus. I hope they do not go down any further , as any neutropenic episodes will be very difficult right now as she tries to finish up high school! Friday left her feeling on the "yuck" side. Staying home and lots of bed rest seemed to remedy things some what. Even so, throughout the weekend she seemed to wish for better days. Can't say I blame her one bit, I find myself "wanting" for the better days many times. There seems to be a bit of confusion about whether or not her meds are suppose to be adjusted. I am sure Oakland will call shortly. Her next appointment is not until May 28. wow!!`

Dr.Archie Bleyer

Months ago Dr. Hastings invited me to hear Dr. Bleyer speak if she could arrange for him to come to Reno. Her efforts came to fruition and Wednesday night I was able to hear him speak at Rapscallions.(yes, yumm-o) He spoke to a group of doctors, nurses on A.L.L. specifically focusing on adolescents and young adults. I ate up every word he said and found it fascinating. With what is going on around the world concerning advancements in A.L.L. treatment, France is the place to be. Hands down, they are the front runner in this race. Although France does not have an obesity problem like we do here in the states, they are are making great strides in furthering treatments regimes for young adults. (obesity greatly inhibits positive outcomes for patients with leukemia) This is not to say that treatment for patients in the states is inferior, but clearly they are doing amazing things. It is well known that adolescents and young adults, even up to age 40, fair much better being treated on pediatric protocols vs. adult. There is no disputing this when you see the data. He also spoke of certain meds like PEG/aspiriganease, and how they make a difference in cure rates, remissions, etc. He also discussed delayed intensification 1 and delayed intensification 2 and how these phases are vitally important and play a big role in a positive outcome. Kristin has gone through these because of her high risk status. We wish that she did not need to because they were hell and at the same time life saving.

He touched briefly on Kristin's particular genetic expression of leukemia, particularly the t4,11 translocation. Holding my breath, I waited for more information with hopes that I would finally get more answers but, he quickly moved on. I have spent many, many hours researching whatever I could find on this particular subgroup of A.L.L. as it pertains to adolescents. There just is not much out there and our doctors just do not know, or they are just not talking about it. If anyone knew, he would. When it came time for questions, I asked Sandy Payne to speak for me concerning other patients her age with this translocation . (I was a bit nervous amongst all the brainiacs in the room) He gave a good, straight forward answer. I will just say that Kristin is unique and she is boldly setting a new standard. Along with top notch doctors from Children's Hospital Oakland, faith, prayers and blessings, she is getting better and better every day. With each day forward, that means that there is one more day behind, leaving the cancer in the past, and looking forward is where she is going.


read on to see just how amazing Dr. bleyer is....
In the 1980s, Dr. Bleyer served as Professor of Pediatrics, Adjunct Professor of Medicine and Radiation Oncology, and American Cancer Society Professor of Clinical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Children’s Hospital Regional Medical Center in Seattle.

In the 1990s, Dr. Bleyer was Chair of the world’s largest pediatric cancer research organization and Chair of the Pediatrics Department at the largest cancer center in the world, the M.D. Anderson Cancer Center in Houston, Texas. Before moving to Bend, Dr. Bleyer pioneered the adolescent and young adult (AYA) cancer initiative [3,4], which has become a national program [5] adopted by Canada and countries in Europe and Asia [6]. Dr. Bleyer is also a founding member of the LiveStrong Young Adult Alliance and Chair of its Science Task Force.

Since 1999, Bleyer has been named among America’s Top Doctors, and has been a recipient of American Cancer Society’s Partners in Courage Award, the American Society of Pediatric Hematology/Oncology Distinguished Career Award, and a Fellowship in the Royal College of Physicians and Surgeons (Glasgow, Scotland).

During the past three decades, Dr. Bleyer was awarded research grants totaling more than $75 million as a principal investigator from the National Institutes of Health, the American Cancer Society, and the Leukemia Society of America. His research has been published in more than 300 peer-reviewed articles, chapters, and books.

EVERY STEP SHE TAKES

Spring


Vacaville, California with family

they are smiling because there were

gold coins in those eggs!

My apologies for not posting for a while. Here is a quick update to be followed by an explanation for the title. Our family enjoyed a quick trip to Vacaville, California for Easter with my parents. The weather was lovely and it was nice to visit old friends. While we were there we picked up an awesome riding lawn mower my father gave to Darren. It has certainly helped out our yard maintenance efforts, but it still takes about 3+ hours to just do the mowing.

Last week Kristin seem to come down with a cold and wicked cough. She flirted with a fever for about 24 hours earlier in the week and spent two days at home. Luckily it seemed to resolve itself just as I had decided to call, regretfully I may add, Oakland. Then, late Friday afternoon, Kristin called to tell me and said she was shivering, cold and had a temp of 101.8. Rats! Although the Broviac catheter has been removed, fever is still not a good thing and needs to be investigated. I called the clinic and they said to go up to Renown to be checked out. (Of course this could not have happened Friday morning at 9:30. That would be too unlike cancer.... and make life just a wee bit easier) Once we arrived, they did labs, vitals and a chest xray. Temp was 102. The xray was clear and I was relieved as the cough was worrisome. If labs came back and she was neutropenic, it would be a 72 hour stay. Lucky for us the labs were not too bad. ANC 800, WBC 2.0 HGB 12.7 PLATES 226. This meant a yummy dose of iv antibiotics and then she could go home. The rest of the weekend passed having no ugly fever rearing it's ugly head.whew!

Every Step She Takes is painful reminder of the effects that chemo has had on her body. The foot drop caused by the neuropathy is evidence in each step. You may have witnessed this on occasion when you run across someone undergoing chemotherapy of one kind or another. I have personally seen some cases, by far, worse than hers and have been grateful that she has not been affected as badly as some. Never the less, for her, the loss of her athleticism and agility has been a high price to pay, among other things. In the hall at school Kristin had passed two girls going the opposite direction.No one else was around, she said hello and continued on her way. The girls began slapping their feet as they walked and began laughing, mimicking the sound Kristin makes when she walks. She found refuge in her beloved Mrs. Cox who gave her some very wise counsel, then in tears called me asking to come home. She napped all afternoon. Sadly, the world is filled with cruelty. But, I and all who read this blog, know that the world is also filled with compassion and charity. You have each been a part of the virtue and not the vice. For that, we are grateful.

sorry for dead space below. i do not know how to get ride of it, but the rest of the blog is still here in its entirety if you just scroll down. if anyone knows how to resolve this problem, let me know. thanks!

QUIET IS NICE

Any guesses to what she is thinking?

Well, I am thinking that mundane would sum up the week thus far. Mundane as in being ordinary, uneventful and this is a good thing! Except for a headache that seemed to have Kristin down yesterday, the week has passed by quietly. Chemo has been the normal routine of mercaptopurine, methotrexate, and the last dose of prednisone for the month.

UPDATES, CLINIC, & COLLEGE

Kristin's clinic visit went well once she got there....Her appointment was scheduled for 3:00. School dismisses at 2:30 which should be plenty of time for her to make it to Renown. By 2:50 I began to wonder where she was so I called the clinic to see if little Miss Independent went by herself.(more about that later) They had not seen her. Shortly thereafter she called and told me she had been getting help for her math class and forgot. Once we got there she had an iv push of vincristine in her hand and all chemo has resumed with the addition of prednisone for the next five days. yuck......does not do this med justice or really any chemo for that matter. I will leave it up to your own imaginations to come up with a more appropriate word. Her next appointment is in four weeks and hopefully it will be smooth sailing until then.

She is counting down the days until graduation. Kristin was accepted into BYU, HOT DOG, YIPEE, WOO HOO, and has plans to attend the summer session to get a head start.(more on that later also) Does BYU know what accepting her has meant? The night she found out she was accepted was when she had her last clinic visit with the meds infiltrating into her arm. Not a good day. That evening as she lay in my bed, I checked the website to see if there had been any updates on her admission status. She had checked earlier that morning and there had been none. I logged on and immediately noticed a status change. My first impulse was to click on the update immediately...I was good and resisted the urge. I called to Kristin and let her know. After gathering her from under the covers, I helped her to the computer. She sat down, clicked, and wept. Sweet tears rolled down her tired cheeks as she smiled and said, " I got in!" My joy for her was unmeasured. From the beginning of this nightmare, college has come to signify hope for a bright,NORMAL future to her. We have spent many a nights talking about college, her potential, and aspirations. With all of college's promises, it has been a constant for her in this not too constant world she has endured so bravely. I am not sure if that makes sense to any of you, but the pursuit of requirements, testing, essays, grades and admissions has been a huge motivating factor for her. The prize is the promises of dreams fulfilled, and a future filled with hope and new beginnings.

What could bring a child with cancer more hope than a future filled with the imaginings of a world without illness?

Does the admissions committee know what accepting this child has really meant to her? I'm not sure if they ever will, but Darren and I do.

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. That is about it really. She may have issues with this even after chemo is done, but what do you do about that? Labs were drawn today, so we will see when she is able to return to school soon. Hopefully they are on the way up.

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 painful and she could not eat. Thank you to my good friends who comforted me when I needed it! We are guarded as any fever is potentially life threatening. Our home is on lockdown right now and the pass to enter is a clean bill of health. You know the drill.

Leslie

RECENT PICTURES

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 happened-that we were no longer in remission. I have always felt strongly that as her parents we need to show no fear, keep positive, and try our best to establish normalcy for her. So, I waited with baited breath for the lab results. Connie Goes called and asked how she was if she had been sick. (i know, the sick part made me laugh) Her ANC was 600, WBC 1.0, HGB13.6, PLATES 266. Why her ANC is so low we do not know, but at least there were no blasts. (blasts are cancer cells) I immediately said a prayer to give my in undying gratitude and thanks to our Father in Heaven.Aside from some small nose bleeds, she began to feel better later in the week. We have orders to repeats labs on Monday.
St. Baldricks was this week. Wyatt chickened out on the shaving part, but he donated his money to the Team Kristin anyway. I will post pictures shortly of the brave boys who did not chicken out!!!!
Natalie Portman is in town. All joking aside, people are always telling her she looks like Natalie Portman when she had very short hair. She has not gone wigless to school yet, but I am sure she will do so shortly.
Much love, Leslie

AMAZING DOCTOR,NURSES & LOVE

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 establishing the pediatric speciality clinic at Renown.

A feat not to be underestimated!

Dr. Robert Raphael also leaves his family behind

to serve the children in the area also.

It is people like Dr. Hastings,Dr. Raphael, Connie Goes, Tia Speirs, and Sandy Payne who fight for the lives of their patients in a battle that could all too easily be lost without their valiant efforts. How grateful we are for the vast knowledge the Lord has placed upon the earth at this time. Although many still suffer and precious lives are often cut far too soon, many others live. I was pointedly and very humbly reminded the other day, that Kristin continues to be with us expressly as a result of divine intervention. This was a profoundly indelible experience. One not easily forgotten. Why her and not another? We will never know except that her time is not yet appointed. As a mother, this unthinkable thought brings me to by knees. It is only through humility, trust, and faith in an all knowing and powerful Father in Heaven, that we have endured the road placed before us. Not to say that this has been easy, as the faith I have drawn upon has descended upon our home from a source not of our world, and from sweet friends like each of you and the prayers of many faithful. I will tell you all God lives! He loves his children! Families will surely be together forever! There is no other way. Any other way makes no sense and I cannot comprehend anything less. This is His plan and has been since the beginning of time. Faith truly is a hope. A hope for things that are not seen which are true and centered upon our older brother, Jesus Christ. His ministry was one of selfless service and has shown me the way back into his open arms. While in the service of our amazing doctors and nurses, I am sweetly reminded of the following scripture. It has long been a favorite of mine and it is my hope that I will forever be in the service of my fellow man and my God.

"Inasmuch as ye have done it

unto the least of these

my brethren,

ye have done it unto me."

matthew 25;40

Leslie

xoxo

"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 that she is still, and will be for another year, immune compromised. Although she has more white blood cells to fight bacteria, and the broviac has been removed, the danger is not as high as it was just a few short months ago.

The procedure went well. She was hit with lots of chemo this week along with prednisone. Yes, we are all on guard! Prednisone makes for a rough week especially when you factor in all the other meds. Thank heaven it is only for 5 days a month. Dr. Lasko attended and started her iv. Kristin made sure she was well hydrated by drinking clear fluids until the 4 hour mark before surgery. (yes sir, you can have clear fluids up until 4 hours of surgery. this window of time is not advertised because it is usually the standard "nothing after midnight" that we are all told. We have gotten this advice straight from the horses mouth so to speak on several occassions) She was the only patient so there was no waiting. Dr. Lasko used lidocaine on her hand for pain and was successful on the second try. She went to sleep right away. Earlier she said she was looking forward to having a good nap. While she was sleeping, Tia Speirs brought in little hair clips to put in her hair. The nice part was that we COULD because she had hair.

Thank you for your kind comments last week. I love you all!

Leslie

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 desperately wanted to get it over. Sandy Payne, nurse, noticed her arm getting hard. The meds had infiltrated into the surrounding tissue and muscle and had not gone into the vein. At this point exhaustion had set in. It had been about an hours worth of futile attempts. I asked to reschedule for another day and the doctors were happy to agree. Worried that she could become too sedated as the meds were absorbed, she needed to stay for a few hours to be observed to make sure she continued breathing and her heart did not stop! She had received 350 mg of propaphol. (grammatically incorrect) Needless to say, she left without any chemo and plans to come back Monday for another attempt. Although this could have ended much worse, we were grateful to bring her home, tuck her in bed, and hold her in our arms. Please remember all these children who have suffered and are still suffering in your faithful and sincere prayers.

GOING TO J.A.

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 basis was reassuring. I am glad to not have to do them so often because it means she is healthier. On the flip side, there is the nagging worry of not knowing.Other than this, she is still taking her daily regime of meds and continues to love living life to the fullest. Shouldn't we all?

Love to everyone,

Leslie

A BRILLANT HOLIDAY

Kristin and her wish granters

First and foremost, we want to express our deepest and sincerest heartfelt gratitude to MAKE A WISH for granting Kristin's wish. Her wish trip was everything and more. We traveled to the beautiful island of Saint Lucia. It is deep in the Caribbean, fourteen miles wide x twenty seven miles long, green and gracious. Politeness and living slow are the norm, driving on the opposite side of the road is suicidal, and cows and goats grazing lazily in the intersections and roadsides are commonplace. Our hotel came equipped with all the fanfare paradise can offer. Sail boats, kayaks, plenty of "Yah Mons and My Lady,"unlimited smoothies, blue skies, white sand, warm water and towering palms. I think the pictures will tell the rest of the story....

WISH TRIP PICTURES

WISH TRIP PICTURES

WISH TRIP PICTURES

kayaking the big blue

sailing with Darren

our first night in Saint Lucia

flying the plane her way

limo ride to airport

MAKING HER WISH!

Just a quick note to let you all know we are heading for the island of Saint Lucia for Kristin's Make A Wish tomorrow! A limo will be picking our family up at 9:00....unbelieveable. Kristin cannot wait and feels like this is the best medicine ever. Honestly, I cannot wait either. I promise to post fabulous pictures as soon as we return. (Well; maybe, the computer has not been too cooperative. So, right now I am shutting it down for the next ten days and do not plan on spending another minute worrying about it) Leslie

FAITH, PATIENCE, HOPE AND GRATITUDE

The following is an article I was asked to write for,"The Family Pulse" magazine.
It was published for their December issue.


Could I have imagined composing my thoughts about coping with my child’s life threatening illness a year ago? Never! Sadly though, I am doing just that. On December 17, 2007, our amazing daughter Kristin was diagnosed with Acute Lymphoblastic Leukemia, A.L.L.

Shortly after she began her junior year of high school, Kristin began to have difficulty finishing her cross country races. In December she experienced sudden and excruciating pain in both knees. After a frantic visit to our family doctor and some lab work, Kristin was quickly diagnosed with A.L.L. and immediately admitted Children’s Hospital Oakland.

With Christmas a week away, plans for the highly anticipated holiday quickly vaporized. Presents were left unwrapped, sugar cookies were abandoned on the kitchen counter, plane tickets to visit family across the country were unused, and lonely decorations stood as sentries over our vacant home. The customary family traditions we had treasured in the past, were now forgotten. Almost simultaneously, amazing friends and strangers immediately coordinated the “disaster clean-up,” easily putting any FEMA team to shame. They took our other children into their busy homes, watched over pets, cleaned up the holiday mess, and most importantly gave undying support. Oddly, the joy we have found in our familiar holiday traditions were not the ones we were gathering strength from. Instead, we began drawing from the well of what has built the foundation of those “customary traditions.” A well steeped in faith, patience, hope, and gratitude. Are not all of our traditions touched by at least one of these attributes?

Since “D-Day” (diagnosis day) our lives have understandably changed forever. Kristin has borne the full brunt of cancer’s cruel assault on the innocent. While none of us walk in her shoes, as her parents, we certainly walk beside her every step of the way. Her brothers walking in front and behind her, and the many other Angels in her life, too numerous to name, lifting her up each step of the way. Kristin has spoken of this often. Their strength, faith, and hope support and carry her through this trial, making the unbearable load a little more bearable. Again, the “well of traditions” was filling her with the strength to face this trial and her father and I were drawing heavily upon them too.

During those early, ominous days in Oakland, Kristin was given some Lance Armstrong material to read. After looking over them she said, “Live Strong is good, but I want to choose to, “LIVE HAPPY.” She has done exactly that and more! As her parents, we see absolutely no other choice, no other option, than to follow her exceptionally wise declaration. If you could be a “fly on the wall” so to speak, you to would be amazed at her strength. None of it is for show. She gracefully rises each day, willfully facing the challenges that await her. I will honestly say that some of those challenges are awful. Getting rid of cancer is nasty business. On occasion we have asked her about this, or have said we were proud of her. She simply responds, “I just do.” As her parents, we have concluded that Kristin undeniably has a “sure and steadfast” foundation that is built upon the time honored traditions of faith, patience, and hope. Understandably, gratitude is forthcoming, as there are not many teenagers who are grateful to be living with cancer!


Is there is something to learn from all of these experiences and from those waiting down this unchartered, bumpy road? Yes. As a family, we look forward to celebrating our holidays with the “customary fanfare,” but at the same time we will continue to draw from the well that fills us with the comforting traditions of faith, hope, and patience. Then there is gratitude. Are we grateful for this moment in life we are sharing as a family? Oddly yes. We share an overwhelming sense of gratitude and togetherness each day. The more experiences we share, the more blessed we feel. Then, strangely, at the same time, each of us realizes just how little we knew before Kristin’s diagnosis.

Through this trying journey there are a few things we do know to be true, that go hand in hand with those comforting traditions. Say I love more often than you think you should, birthdays are for joyous celebrations, and always love deeper, speak kindly, and give more generously.

Warmly,
Leslie, Darren, Eric, Kristin, Cody, and Wyatt Katich

CLINIC VISIT

Kristin's visit went well yesterday. As we walked in her demeanor quickly changed for the worse. I will explain why shortly...She had a check up and then her push of Vincristine. In the past she had gotten this through the broviac catheter which is painless. Well...we said good by to the catheter last week. Consequently all chemo will now be given intravenously. They have to use the back of her hands for labs and chemo now as the other veins are weakened. On the first try her vein blew and they had to try the other hand. The tears rolled down her cheeks, dripping onto the table. She was quiet and held still accepting what needed to be done. These children are amazing!!!!
As we walked out she said she was sorry for being grouchy. She told me when we got there, she began to think about the procedure, that it would hurt, and she just did not feel like being nice. I said that that was okay and you do not ever need to apologize for that!!!!

SUPERBOWL

Kristin planned and arranged to have friends over for the big game. Evidently she is quite the little party planner. They all had a good time and enjoyed all their junk food and having the house to themselves. They even cleand up! I am grateful for these young people and their friendships. Little do they know how much they can help when it comes to the healing process. Then again, do we ever really know the far reaching depth that friendships really have on the human spirit and it's innate ability to heal?

...she said,"I'M FREE!"

I thought I would let everyone know that Mr. Broviac is no longer a part of Kristin's life! Hallejuah... He was laid to rest at 9:30 a.m. on January 30, 2009 after serving faithfully in the fight against childhood cancer! All kidding aside, we are thrilled to have this part of the the journey behind us. This is a monumental day for cancer patients as it represents that they have completed a very difficult part of their protocol, and can now move on to a less intense phase. Kristin and all the others before her have all paid a big ransome to get to this point. I am so proud of her. It took all of three minutes to remove the broviac and the surgeon seemed to make a point of letting us know that it took such a short time. I got the impression that he was put out for having to do it in the OR. Then again he was not a pediatric surgeon nor an oncologist making him indifferent to what these kids have gone through. No one suffering with cancer needs to "suck it up" for even three minutes after what they have endured. Child and adult alike! Kristin is a bit of a celebrity at Renown and some of the nurses made a big deal about it. The magazine with her picture on the cover was everywhere and people always notice her when she goes there. She is a bit embarassed by this and always down plays the whole thing. She says it is no fun to be popular because you have cancer. I agree!

After recovering we celebrated by going to IHOP for pancakes as she had been craving them since last night. She took a long nap and is currently getting ready to go out for the night. I can tell her counts are low as she is on the pale side of the color wheel. I know this will not stop her....

THANKS EVERYONE....WE LOVE YOU ALL!

HOW IS YOUR DAUGHTER DOING?

This seems to be the most asked question we get. Another Mom who has a darling little boy with A.L.L. put this phase of treatment like this,"We've already done harder, now we just do hard!" That pretty much sums it all up. Although she is done with the "shock and awe" of treatment, she continues to take a cocktail of chemo and antibiotics each day and will continue to do so until April of 2010. These meds seem to keep her dancing close to the edge, but not close enough to need hospitalization or transfusions, etc. Yes, she has perked up since Delayed Intensification 2, but at the same time she still does not feel "much better" like we keep hearing she is suppose to. Maybe I am expecting too much too soon....???? I am sure this day will come, probably when we least expect it.

In the mean time, Kristin is busy filling out scholarship applications and taking the ACT in little doses. Since she pretty much missed her junior year of high school, and has not been healthy enough to sit the for ACT for one reason or another,(ie. hospitalizations, transfusions, neutropenia,etc.) she was able to get special testing accomodations. She can take the test on any given day, with extended time and testing days. Isn't that great! We were so relieved that she was able to do this. BYU accepted her application while waiving the ACT deadline.

Our family continues to be indebted to our Father in Heaven. Without his grace, guiding hand, and blessings, we know that things could be much worse. How grateful we are for his tender mercies which have been showered upon Kristin. We can only speculate the "whys," but honestly, we do not even like to go there. What we do know is that there are lessons to be learned, he is aware of her needs and suffering, and that one beautiful day this will be all worth it if we remain faithful!

MAINTENANCE AND BROVIACS

Kristin went to school "almost" everyday last week for finals. It was a struggle, but she gave it her best. On Monday she came home and slept for three hours. The next day she took four cat naps. By Wednesday I knew something was not quite right so I called to relate this to the Doctors. I had a suspicion that her HGB was running low. She was pale all over and had been having headaches and not much of an appetite. I have been told over and over that she should be feeling and looking much better in Maintenance. Well, I have been waiting....and wondering when that would be. We did labs and her HGB 8.6, WBC 2.0, ANC 1600, PLATELETS 200. She was running low on red blood cells but not low enough for a transfusion. (they transfuse at 7.0) This is fine as I do not want to expose her to any more blood products unless it is absolutely necessary. Even though so many precautions are taken now, there are still some serious risks involved with each transfusion. She has had more than her fair share of them. You should see the consent forms we sign with each one; they make me nervous, but they are life saving and necessary. I hope that this is not a pattern that will follow her throughout maintenance. It will make college very difficult with counts like that. I am pretty sure the Methotrexate is the guilty party here. She takes this once weekly and will continue to do so for another year and a half.

We went for a consult to have the Broviac removed. yipee! The Dr. Stumpf wanted to do it in his office under just a local anesthetic. He did say she could do it in the O.R., but that it would be more of a hassel to schedule and more expensive. So what! Remember, this is inserted directly into the main artery of her heart. There is a small cuff just under the skin where the port comes out of the chest. Kristin went pale when this was presented. How awful! I talked to Dr. Hastings and she said,"Kristin has been through hell and back and having these removed can be very unpleasant. It is always done being sedated. She should not have to endure the procedure awake. Absolutely not. Sometimes doctors are not very aware of what these children have endured." I also talked to Kevin Lasko and he did not recommend doing it this way either. As we walked out of his office I supported to her because the very thought of doing the removal awake caused her to go weak in the knees! She climbed into the car seat with tears in her eyes. I promised I would not let him do it under just a local and reminded her that he left the option of doing it in the OR open, and would call to reschedule the appointmen tomorrow. Dr. Stumpf's office was very obliging and they are going to schedule the procedure in the O.R. Thank you!

As the days go by, I find myself grateful for every moment we have to enjoy Kristin and her brothers. I cannot let a day go by without saying I love you and giving each one of them a hug. I know there are many parents who wish they could have just one more day to do so. So, if you are reading this, hug your children and tell them you love them because you can!

BETTER LATE THAN NEVER?

Okay, I am a bit behind on updating the blog, but found a minute to post a few pictures from Christmas. Christmas Eve we had dinner with the Hames and then acted out the Nativity. Kristin played Joseph. I am thinking she makes a rather handsome one at that!

DAN DUGAN'S "LIVE STRONG RIDE"

Here is an article that was in the RGJ about Dan Dugan. If you have read back, you will know that he was responsible for the young boys "Live Happy" soccer team. He is a passionate supporter to the cause! While Kristin was in the hospital, he personally came down to give her a beautifully framed Live Strong race number that he wore during the ride, along with his team Kristin shirt. Kristin was taken back by the gesture and comments on the picture hanging proudly in our family room often. She feels humbled at his generosity, sacrifice, and contribution to the fight! We are too.
thanks Dan!

Dan Dugan of Reno rode in the Livestrong Challenge on Oct. 26 in Austin, Texas. Dugan placed 129th overall out of the 1,583 riders in the 94-mile race, and 16th in his age group.


He finished the course in 4 hours, 46 minutes. Dugan rode in honor of Kristin Katich, a Galena High senior who is battling leukemia.
Lance Armstrong and his pack of pro cyclists led the annual race which raised more than $4 million for the Lance Armstrong Foundation. Dugan raised more than $6,000 in donations and pledges and was invited to attend the Appreciation Dinner the night before the race.

the following is an inspiring letter he wrote to Kristin after the race...I thought I would share this with all of you.

Kristin:

Attached are some photos taken after my finish in the Livestrong Challenge race in Austin, Texas this last Sunday (I felt better than I look!). I will have some more to send on to you in a while.

I raced very hard in your honor and in honor of my sister-in-law, who is currently going through radiation for breast cancer, and in memory of my brother-in-law, Steve, who suddenly died a few years ago from cancer.

The main messages from Lance Armstrong at the dinner on Saturday night were:
1. We will never give up the fight against cancer. Never. Not ever. Never.
2. You have to have 100% trust in your treatment team. That doesn’t mean you don’t ask questions or find your own answers or seek other opinions, but it does mean that you need to have faith that you can beat this and that your whole team is there with the same goal in mind.
3. You will never be alone in your personal fight.
4. Lance has asked us all to keep cancer research and prevention as top priorities in our communities, in our nation, and around the world.

Here are some facts from my weekend in Austin:
· The four Livestrong races around the country (Portland, San Jose, Philadelphia, and Austin) this year raised over $12 million for cancer research
· The Austin riders raised $4.1 million of that
· My local group of donors, who knew I was riding for you and Sharon and Steve, donated over $5,300.00, which was my personal goal for the year. Usually more donations come in as the month progresses. People here are behind you. I had a few donations from people I don’t even know, but who know you through Galena leadership. Even Mr. Brown and Ms. Cox donated!
· Lance is coming back to racing in order to spread the word about early detection and treatment around the world. He is convinced that as long as he is on his bike, his message will spread faster and farther. He is not even taking a salary from his team—he is just riding to spread the word.
· Lots of people asked about your shirt. Everyone loves the simplicity of the message. Everyone who asked told me to tell you to “Live strong” and they are thinking of you.
· There was a long series of hills between mile 40 and mile 70. My Reno training served me very well through those sections. At mile 70, however, I hit a rough time, legs cramping, lungs sucking for air. What I do at those times is think of people like you and Sharon and Steve and what you all are going through to just stay alive and then I finish with my saying, “Wah Wah Wah.” Wah Wah Wah means, “why are you whining about your pain right now—this is nothing compared to Kristin—shut up and pedal your bike.” I can always get past those rough spots when I employ the “Wah Wah Wah.”
· So, you pushed me to the finish:
o 90 miles in 4 hours and 46 minutes—averaging about 19 miles per hour
o 129th out of 1,583 riders
o 16th in my age group

I hope you can tell from this that the Livestrong Army is behind you. We are dedicated to getting you through your disease and dedicated to keeping the same thing from happening to anyone else. I was momentarily shocked by the news that Max delivered to me as I walked through the door about your set-back, but that changed very quickly to anger at the disease and a deeper resolve to keep the fight going.

What is something the Dugans can do for you or your family today? We will drop everything and do whatever needs to be done. Let us know.

Thank you for your courage. It inspires us all.
Remember the Mission statement for the Foundation: Unity is strength, Knowledge is power, Attitude is everything.
Keep fighting and keep defying the odds.

Dan Dugan

MAYBE JUST A TRIM!

Our clinic visit at Renown went well today. Kristin had an IV push of Vincristin courtesy of the lovely Tia Speirs. This med is the bad boy who is responsible for her neuropathy (nerve damage) that makes it difficult to walk and now even holding a pencil, silverware, etc. you may often see children "marching" and their feet slapping when they walk. This is because their ankles are very weak and they are unable to lift them when they walk causing the foot to drop. They must rely on their quadriceps to lift their feet. Kristin is very self conscience of this and has been working with a physical therapist to regain some strength and balance. It may take a while, but she has been reassured by her Doctors that this will resolve and that they have never had a patient return after therapy with "the dreaded foot drop."

Her med regime continues to be daily 6MP (mercaptopurine), once weekly Methotrexate, monthly Decadron for 5 days.

Did I mention we have had a sighting of hair! It is glorious...

While we were there a previous patient came in. His name is John. He was 18 when he was diagnosed with A.L.L. He is now 22 and doing great. It was good for Kristin to talk about snowboarding, living, and getting the darn Broviac out and have someone know exactly what she was talking about. I was grateful she had the chance to meet him.

As far as labs go today Connie said they were good. She said,"ANC is 2600 something, HGB 10 something, Platelets 200 something, we are not worried about them. You can do the next labs the day before her next appointment in February." Gasp! What will I do without my numbers? I think she was waiting for me to have an anxiety attack. Should I be happy? Well yes, but I know I am going to wonder everyday. I find myself pacing and anxious until I hear her awake every morning; or if she takes a nap for too long, I feel the need to constantly check on her. I wait with baited breath until she returns home from school or when she is out for the night.

Alas, it must be time to cut an apron string. Okay, maybe just a trim........

"TROY, I FINALLY POSTED!"

I apologize for not posting sooner. I have felt the need to take some time off of "all things responsible" and just enjoy the time with the kids and being home. Our family Christmas was beautiful! Free from hospitals, appointments, and drama (well maybe just a little drama, but nothing worth writing about)and filled with charity and kindness from all of you. We loved every card we received. Shame on all of you who do not send cards!We felt like we were away on vacation even though we stayed home the entire break.

Kristin is almost a month into Maintenance. It has not been a walk in the park, but it is certainly a reprieve from the previous. We did labs today in preparation for tomorrow's chemo trip to Renown. I am curious to know the results. Kristin struggles with gaining her pre-leukmeia strength back. She is very determined and we have no doubt that she will obtain this goal in the near future. She is coping with a relentless cough that will not give up and a runny nose. I hope these do not develop into something more serious. The first day back to school after the break was exhausting for her. She came home and slept for three hours!

The following is a link to an excellent website where you can get the very latest on childhood cancer, like Kristin's, and many others. There is even a story of a little girl, Brianna, with the same genetic translocation as Kristin. (T 4,11) Kristin's doctors are affiliated with C.O.G and her treatments are a result of all their research thus far.

http://www.curesearch.org/

JUST POSTING THE LATEST

Kristin's labs from the last report Wednesday Dec. 17: ANC 4000, PLATELETS 230, HGB 10.7, 85% neutrophils! Although her HGB has fallen, her ANC is way up. (ANC=absolute neutrophil count, bacteria fighting white blood cells) Kristin slept until 1:00 Saturday afternoon and looked quite pale. I was worried all day, and had terrible thoughts racing through my head. By Sunday she was feeling and looking better. We ended the night by playing a wicked game of Chinese Checkers.

DECEMBER 17 TO REMEMBER ANNIVERSARY

It has been one year since Kristin was officially diagnosed. I cannot begin to write about the many thoughts and feelings we have had leading up to this day. They are each etched forever in our memory. Of all these experiences, we are celebrating the fact that Kristin is with us to honor the day. The journey has been undaunting and at the same time I want to exclaim, "Look where we were a year ago, look where we are now, look at where we are going!" Kristin named the day, "Happy Cancer Day" um.......I am not too sure about the happy part, but I feel that this day, with each passing year, will grow in significance, especially for her.

WINTER BALL PICTURES

Kristin and Cody
Darren Lasko, Annie Roach and Rob Stachofski

I am finding this time of year, particularly this coming week, to be nostalgic. I compare this pics to those of last year. wow! What a year.

MAINTENANCE BEGINS!

When we arrived at the clinic today Sandy said,"There should be fireworks, bells and whistles!" Yes,there should. I shutter when I think of where we were last year at this very time. Kristin had an LP courtesy of Dr. Hastings and Dr. Lasko with IT methotrexate and an iv push of vincristine.(which has caused the worse neuropathy yet! I am keeping her home from school because it is so bad.) She also began a PO(by mouth) regime of 6MP which will be every day another year and half, DEX for the same duration of time, oral methotrexate once a week for the same time period. Weekend bactrim will continue until the end of maintenance. In a nutshell the goal of Maintenance therapy is as follows. If a patient stays in remission after induction and consolidation therapy,which Kristin has, maintenance therapy begins. I have said many times that is takes a long time to "kill leukemia." The goal is to destroy any disease cells that remain so that the leukemia is completely gone. Maintenance therapy is less intense than the other two phases. It is not a walk in the park, but the transfusions, etc. should be behind us. It may last two to three years. She should be gaining some strength, growing some hair, be in school on a more regular basis,and feel much better soon.

Kristin's official stop chemo date is APRIL 2010!
We are counting the days and NO....I did not type the date wrong. I hope this answers many of your questions about whether or not she is finished with treatment.

This is a huge accomplishment for Kristin. How grateful we are for the gifts and talents of her medical team for bringing her this far. Without their truly amazing talents and the progress of research, Kristin would not be with us today. This alone is our greatest gift!

GREAT LABS!

now that is a bad hair day!

WBC 2.1, HGB 11.3, PLATELETS 410, ANC 996! It has been a very long time since we have seen these numbers. Also, there has been a sighting of eyelashes!

IF IT ISN'T ONE THING IT IS ANOTHER!

December 1st.was to mark the beginning of Maintenance if Kristin's counts had recovered. The morning began with a phone ring...."Kristin's counts are garbage, if she is in school she needs to come home, no chemo or LP, no Maintenance,and she needs to be under social lockdown." Rats! Unfortunately Darren had arranged to have to work done on our electrical and heating system. This project ended up to be more than some minor adjustments. There was way too much unhealthy and potentially life threatening construction dust floating around. To compound the situation Kristin's ANC was almost nonexistent. Along with construction dust comes fungal and bacterial spores that when breathed in by an immune compromised person can be very serious.It was way too risky for her to be home. So, we found new hotel, Stay Bridge,and they had some rooms that had never been used. Kristin had her own little apartment suite for four days. We all enjoyed taking turns spending the night with her and the boys loved the new pool. Darren and I juggled trying to keep things going smoothly at home and at the same time making sure that Kristin did not feel abandoned at the hotel. I am always asked how things are going. My new truism is,"If it is not one thing, it is another!" It just seemed fitting the last few weeks. All that said, the very best part of all this was that fact that she made it through the last few weeks of Delayed Intensification 2 without any fever!!!!!!!

GIVINGTHANKSFULLY!

Thanksgiving 2008
After tanking Kristin up for the long holiday weekend, our family gratefully celebrated Thanksgiving with the Corrie and Alex Hames family. With the exception of Kristin being neutropenic, the day went without incident. We indulged ourselves in fabulously delicious Thanksgiving eats. The evening was topped off with charades and the movie Australia.

As the weekend ended,I found myself profoundly grateful for the significance of Thanksgiving. The depth of gratitude I feel is unmearsured and leaves me hardpressed for the right words. Simply put, thank you. Leslie

NOTHING TO WRITE HOME ABOUT

Kristin had an appointment this morning for Vincristine at Renown. Tomorrow we will go back for stat labs and probably a transfusion. Since her counts are heading south, Dr. Raphael wants to avoid a Thanksgiving Day transfusion as no one from Oakland will be in town after Tuesday. While we were there she talked with some of her favorite nurses, Tia Spiers and Sandy Payne, about her new career decision...nursing. They gave her some good advice. I know she is excited about the future and we are just as thrilled also. We talk about future plans often, knowing that there are so many good things in store for her. I personally think she would make an excellent nurse especially if she chooses the hematology/oncology path as a nurse practitioner. (yes Connie, just like you!)

As of today there are only seven days left of Delayed Intensification 2 and then she will be in Maintenance! (count dependent)This is significant because she can look forward to having her Broviac removed in February. Most of the chemo will be PO. Dr. Hastings said that she would not be needing anymore transfusions and can look forward to feeling much better in the months ahead. Maintenance will continue until March/April of 2010. I know that sounds like a long way away, but we are so close to putting this horrific year behind us,and I guess that really is something to write home about.



counts as of today are WBC 1.2, ANC 240, HGB 8, PLATELETS 80.ALBUMIN 5.6,

Thank you for your continued support and prayers. A day does not go by when our family does not count our blessings and humbly thank our Father in Heaven for the tender mercies that have been showered upon our family. Leslie

WHAT ARE YOU HAVING FOR BREAKFAST?

After chemo on Monday;I know, no rest for the weary, Kristin's platelet count was on the way down. Last week she was at 187 (x1000) and by Monday her count was 30. Connie called with the plan, a stat CBC early Wednesday morning and plan on a transfusion for later in the day. We knew her counts were low as she has had a little nose bleeds since Sunday and the three shots of PEG bled more than usual. So while Kristin ate waffles for breakfast, I drew her labs. Yum-o! Her counts as of today are ANC 200, Platelets 17, HGB 10. We spent the afternoon at Renown getting tanked up on Platelets.

UPDATE

Kristin is currenly in room 5330 getting two units of PRBC's. Her counts are on the way down and I am hoping that this is all the drama we will see. It has been a long, difficult...two months.....seems like forever.... especially as we approach the one year mark. Our daily excursions to Berkley have been uneventful. (I decided that if I had another life, I would like it to be in Berkley. I love this area!) We are going to Alta Bates Hospital. I am taken by the compassion, charity, and warmth that the patients are treated with here. It is the same spirit you feel when you walk onto the 5th floor here at CHO. Wonderful people who truly and compassionately love what they do. Back to her radiation.....Her radiation takes all of two minutes. I call it a "lick." Thankfully she is getting a very low dose so the side effects are pretty much nil. Kristin really looks forward to returning to school on a more regular basis. I cannot begin to tell you of the hardships Kristin has gone through. She is amazing.

thank you to everyone who is helping out at home.....we could not do this without you.

Love,
Leslie

CONTINUING DELAYED INTENSIFICATION 2

We have been here in the bay area for a week now. Kristin was admitted to Oakland where she received Cyclophosphamide (cytoxan) and Ara-C. We are also doing radiation daily in Berkley at Alta Bates Medical Center. Except for a rather severe anaphylactic reaction to IVIG (iv immunoglobulin) so far all is going well. After alarms and the whole hospital descending on Kristin's room, our Doctor said,"We won't be doing that again!"I told Kristin I am over the drama!

Remembering Eric

I am asking all of you to please remember the Trowbridge family in your prayers during this very difficult time. They are a beautiful family who have endured and experienced more than one could imagine with courage and grace beyond my ability to express. I honor his memory with the courage he fought his battles with.

PLEASE REMEMBER ERIC

I would like to ask all of our faithful friends and family to remember Eric Trowbridge in your prayers. He really needs all the help he can get right now. Sadly, there have been many serious complications following his successful bone marrow transplant. Eric is a fellow Galena student who we have grown to love. Heaven is very close to these children. Kristin comments on this often, they feel the strength of your sincere and humble prayers offered on their behalf. Thank you for remembering Eric.

YEA, SHE'S HOME!

Kristin came home around noon today. What a difference from last Friday! From too weak to speak to walking out to the car on her own! She still needs to have TPN for 12 hours a day. This is in addition to anything she can take by mouth. As far as labs go Triglycerides are still very elevated???? Peg asparaginase seems to be the culprit here. Albumin is still low, but seems to be holding. HGB is dancing close to the edge so hopefully we can make it through the weekend without any transfusion issues. The fungi seems to be retreating. An upper GI scan showed the possibility of an ulcer, but we won't know for sure as you have to be scoped to confirm one and that is not an option for Kristin. But, all the symptoms are there and many of these kids have had ulcers so it is not a surprise. She is due at CHO on Monday morning and it looks like we will be there for about 10-12 days for chemo and radiation.Kristin is not quite up to speed, but she has definitely improved thanks to all the great care she received at Renown. She received excellent care from some outstanding nurses who genuinely loved her through this ordeal. Thanks to Dr. David Petersen,Kristen, Denise, Kenna, Jess, Jen, Becky, Kanna, Delores, Cheryl! Nurses are awesome!



I have to thank all the good friends who gave their support and love to all of our family. Please know that this past week would of been unbearable without all the help and prayers we received.

UPDATE

Again, I am stealing a moment in the doctor's dictation room to update. It was decided not to scope Kristin to confirm an ulcer. Dr. Raphael feels her counts are going too far south to risk the procedure, and that they are treating her as if she does have one. Kristin in trying to stay on top of the pain, but it is difficult. Her albumin level dropped more this morning so she is getting albumin. This is a protein that helps cells retain fluid. Fluconazole is still being given along with another antibiotic for the fungus. It seems to be effective. Hopefully she can take in more calories, and stay on top of the pain so we can get the girl home!

thanks for the help and prayers......

VERY QUICKLY

I am stealing a quick moment to give an update on Kristin's condition as I run home to get let the boys know they still have a Mom. The weekend was very rough to say the least. Thank heaven we have had a very hard working doctor, David Peterson, and nurse Kristen advocating for Kristin's behalf. I cannot begin to write about all the road blocks they have run up against. Too much drama. Physically she is very weak, and tires extremely easily. The NG tube was removed Saturday and brought much relief to her sore throat. Unfortunately it was discovered that some creepy crawlies were growing back there. Today the culture showed it to be "multiple fungi agents." They have changed the meds to fluconazole(sp). Hopefully this will not be an opportunistic fungi. An ultrasound revealed a "moderate amount" of fluid in the abdomen and has quite a tender belly and is in pain just about all the time. This may be due to her low levels of albumin. Then there is the terrible relux Kristin describes as a crab biting her in the chest. She continues to be fed through her broviac with TPN which gives her inflamed esophagus a rest, but still tries to eat some by mouth for much needed extra calories. I laughed when they sent "no fat" yogurt with her breakfast. Seriously! Her blood sugars spiked due to the Dex she has been on and required insulin. This simple stick left her with an awful bruise almost immediately so now the insulin is added to the TPN. The bruise is about 2x3! The plan is to not put the NG tube in again, treat the throat with fluconazole, and continue with meds for the acid reflux. She will most likely come home with the TPN. I would not be surprised if she has an ulcer at this point. Her weight is now stabilized, so hopefully she will not be in the starvation mode for much longer and she will perk up. Kristin has said that she has never felt more awful than now. I will second that!

Thank you to all who are helping out. Dinner, picking up kids, laundry...you know who you are! I am very grateful....

"THE BRAVEST THING I HAVE EVER SEEN"

Kristin has taken quite a down slide the last two weeks and yesterday it caught up with her. She quickly lost the last few healthy pounds that she was hanging onto while she has been trying to recover from the last two doses of doxorubicin, dexamethasone and vincristine. Although we are repeating delayed intensification, this go around has been extremely difficult and physically taxing.

Yesterday, she decided; on her own, that she needed extra nutrition. Actually she had gotten ready for school and was desperately trying to eat something for breakfast. We took one look at her struggle and Darren carried her to our bed to rest. "I cannot do this by myself Mom.," was her surrender. She called Connie Goes; our nurse practitioner extraordinaire herself unbeknownest to me,while I was in the shower. Connie ordered an NG tube (nasal gastric) for which liquid nutrition would be given to Kristin at home. Knowing that she truly needed this, Kristin bravely went with me to Renown to have this procedure done. She was extremely weak at this point and we were looking forward to the relief that the extra nutrition would provide. As she sat on the bed the nurse, without warning,forcefully shoved the tubing down her nose. It was such a shock and took her by complete surprise! It had gone down her airway instead and she began to wheeze. Too weak to accept the extremely forceful act, tears began to pour. Honestly, from both of us. Neither of us were prepared for the brutalness. The nurse quickly pulled it out and apologized, saying that she was told it would be better if she did it quickly. I said we needed a moment to regroup and to be alone. Being too quick to opt out of this procedure, I said we did not have to do this. Kristin said,"I have to do this, I don't want to, but I cannot do this on my own. I am too weak." As the moment settled, I offered a humble prayer that only a mother could, asking for peace and the ability to commit to this procedure, for it to go smoothly and without incident. The nurse entered into the room. As a calming spirit enveloped around us, Kristin peacefully, confidently and bravely said, "Can I do it myself?" I was speechless. She took a deep breath and inserted the tube as if she had done it a hundred times before. The nurse then said,"I think that that has to the bravest thing I have ever seen." Yes, it was the bravest thing I had ever seen also. As I write this I am still moved by the surreal moment.

Sadly though, the NG tube was not enough. I slept with her through the night to make sure all went well with the feeding. (I have to say that, from the beginning, I cannot help compare all of her care, returning home from hospital trips, etc. and how they remind me so much of taking care of a new baby.) By the morning she was terribly weak and could not so much as lift her head up. Connie called and I told her of Kristin's condition. She quickly arranged for her to be admitted and to be put on TPN to help stabilize her. The TPN will be administered through her broviac line. Darren came home and called Gerry Hansen. They gave Kristin a beautiful blessing. Too weak to walk, Darren carried her to the car. Upon arrival she was weighed and we were disappointed to see she had lost two pounds since yesterday!

I am very grateful to have her in the hospital. I feel the NG tube and the nutrition we were giving her at home was definitely not enough and things would have only gotten worse. So, right now we are trying to get on top of this. Kristin was dancing pretty close to the edge, but this last go around of chemo was enough to push her over. It happend very quickly and has taken us all by surprise. I have never seen her in this state and hope that it resolves shortly. It is very upsetting. Right now Darren is with her for the night and I will return in the morning. Before I left she softly whispered that she knows everything will be okay. Yes, baby girl!

Tomorrow is Eric's birthday and hopefully we can try to simulate something that resembles a party at the hospital. I am thinking that sushi will somehow have to be involved.

A big thank you to Shelly Gunter who fed my family and brought her puppy,Porsche over to love Kristin.

I will close with asking for more of your prayers to be offered on her behalf and for Eric Trowbridge who is also fighting his battles in Oakland.

Leslie and family

p.s. to read more about Eric, I have his families permission to provide you with his website in hopes that you will include him in your faithful prayers also.
www.caringbridge.org/visit/erictrowbridge

HOMECOMING 2008

This was a priceless moment. After being announced,

Darren carried Kristin

through the honor guard.

"Getting by with a little help from my Dad."

Kristin and Darren Lasko at the homecoming assembly.

a.k.a. Foxy Cleopatra and Austin Powers

Keeping warm before half time.

BEAUTIFUL!

I CANNOT THINK OF A TITLE!

Kristin has requested that all of our friends remember her in their prayers specifically to help her get through this very rough phase for her. Her weight is at an all time low. She has lost 20% of her body weight! That is not good. Our option is to tube feed her through the nights for extra calories if we cannot manage to put on a few pounds in the next 10 days. This verdict brought tears.The last two weeks have been especially hard on her physically and each and every day, every step is a struggle. When people ask how things are going.....well it is just plain awful! She is physically and emotionally spent and frankly so am I.

thank you for your thoughts and prayers....I see innocent children, the preciousnesses of life, on a daily basis; who's lives are forever changed, struggle through the "awfulness" of chemo, and face each day will simply the will to live!

Gratefully,
Leslie

THAT CAN'T BE GOOD...

Just a quick note to top off all the drama of the week. As I went to draw labs yesterday (Thursday), I discovered that her clave on the end of her Broviac catheter was left off. Kristin said, "I didn't do it!" Of course not, but there was no way I was going to flush it like that for fear of sending bacteria straight into her bloodstream. I don't know if that is possible, but I did not want to risk it. So I called the clinic at Renown because our Oakland Docs were in town still. They had us come right down and they did blood cultures and gave her some more fluids. She is still feeling poorly. It has been my experience that no news is good news when it comes to culture results. It is mid afternoon Friday so I am hoping all is fine.

It has been made known;and not very ethically I might add, that some Doctors do not want her on the peds floor anymore because she has turned 18....( yes, a doctor came in the room while I was gone and told Kristin he would not treat her anymore because she is now 18) Why cannot people be flexible? Evidently the peds doctors have a policy to not treat patients after they are 18. Why would you change a patients caregivers in the middle of their treatment, especially one as long as Kristin's, because they are suddenly a day older? So, where are we to go when Oakland is so far away? Do you introduce her to a new adult oncolgist who is completely unfamiliar with her protocol in the middle of this very intense phase? Pediatric cancer protocol is a completely different "beach" than adult cancer protocols. This is one of the reasons for the great successes they see in the cure rate of childhood cancer.I wonder how some of these docs would feel if this were a member of their own family?

LIVING LIFE

RENO BALLOON RACES

LIGHT THE NIGHT WALK

DOWN TOWN RENO

GALENA KIDS SHINE AT LIGHT THE NIGHT

THANK YOU TEAM KRISTIN!

PLEASE PASS THE FLUIDS AND LEAVE THE RED TAPE OUT OF IT!

After Monday's chemo, Kristin has had a rough go of it. She received vincristine, and doxorubicin. This has made her very sick. Without any of the unpleasant details, I will just say she began to lose it out of both ends. by Tuesday afternoon she began to have blurry vision and was too weak to walk! Darren carried her to the car. After some political red tape due, to the absolutely ridiculous fact that Kristin is now 18 and no one would step up to the plate to admit her. (I am not kidding! Renown needs to figure this one out if they want to be a "children's hosital" like they have been saying because Kristin will not be the only 18 year old with a pediatric cancer!) Nicole, as nurse at Renown, said to bring her in which I was about to as she was withering quickly. Oakland had arranged for our home supplier to bring 1 liter of fluids to our home later in the evening due to the fact that no one was willing to admit her at Renown. This was way too long to wait considering all the fluids that she had been losing. She received fluids through the night and was able to come home in the morning. She is still struggling quite a bit with the effects of the last round of chemo. Although her counts are very good right now, I am surprised to still see her "down" like she is. We are hoping that she will bounce back in time to participate in homecoming tomorrow. I would hate to have her miss this. I am holding my breath.

For the wonderful friends including Kristin in your prayers, I ask that you continue to do so and that you add Eric Trowbridge to your prayers also. Thank you sooooooooo much.

AND SO THE STORY GOES...

Oct. 6,2008 marks the beginning of Delayed Intensification 2;DI2, which will last approximately 57 days. This is be an intense phase for her as it also includes eight days of radiation, steroids, ARA-C, and cyclophosphamide. yuck. The first day started with an LP and intrathecal methotrexate, vincristine via the broviac, a six hour infusion of donorubicin (sp)and oral dexamethasone. Yes, it was awful. Thankfully Galena had a three hour delayed start the next day and she was able to sleep in. I could not believe she was off to school even with the extra sleep. Her hair is beginning to grow once again, but we know it will be short lived. This is always a difficult pill to swallow. Wednesday was filled with an echo to monitor the condition of her heart. The donorubicin weakens the heart muscle and she needs to carefully monitored. Then, we went to Renown for three shots of PEG. These are the shots that patients can have severe allergic reactions to. So, she was carefully observed for two hours. A big thanks to nurse Sandy Payne who came in just for this purpose. so kind!

As of the previous post, Kristin had a transfusion. She felt much better and her counts were doing well.This made it possible for our family to travel to Salt Lake to visit family, friends, and attend conference. Although the visit was short, it was good medicine for Kristin. She has been wanting to visit for quite some time, but has been unable. I think the distraction was so good for her and helped to release some of the tensions and pressures she feels. Not only did she visit her grandparents, but she was able to see some well loved childhood friends. On Friday night she went to the Timpanogas football game with some friends from Orem. This brought tears to my eyes to see her reuniting with friends. Everyone was so happy to see her. Saturday we attended conference and sat just a few rows back from the stand! The Brunst family was able to attend the session also. Cody enjoyed sitting with Chris. They have been friends with since they were 3. The tickets were courtesy of Johney and Claudia. thanks, it was Awesome! The boys went to visit Johney and Claudia afterward while Kristin and I were able to visit Georgia and Sarah. We were neighbors in Bountiful and Sarah was Kristin's first best friend, and Georgia is very near and dear to my heart. Again, a few happy tears. We were able to get caught up on each others lives while enjoying a scrumptious dinner at Tsunami in Sandy. Then, Kristin got together with Keith Hubert who is always gentleman. Again, a little tear... They went to a haunted house and if you do not know about the haunted houses in Utah....they are pretty creepy! Keith is a good friend who moved from Reno to Alpine, Utah and now attends BYU. Sunday morning we attended the morning session with Grandma Inza and Keith. We said our good bys, found an empty parking lot to change our clothes in, and drove home. I promise to post pictures soon.

Our thanks and love to you all.

WHAT GOES UP, MUST COME DOWN.....

Like the title says...Oakland called this morning with lab results from yesterday. ANC 490, HGB 6.8, PLATELETS 120. Although the last labs indicated recovering counts, this week that is not the case. It appears that whatever kind of recovery she was having is taking its sweet time, while some counts are on their way down struggling to recover. This translates into running a CBC down to the peds floor at Renown so it can be typed and crossed for two units of packed red blood cells. Since no one from Oakland is in clinic today, I have asked if we could do the transfusion tomorrow instead of going to the pediatric floor and hanging out until 2 a.m. like last time. This way everything can be ready tomorrow morning and the process will not be so long. Making things much easier for Kristin. Here we go again!

RECOVERING COUNTS

Monday morning it was decided that Kristin's marrow was slowly on the upswing and recovering enough to where the docs felt that Kristin could come home. This news was met with much relief on her part. After looking at the monocytes, her labs were all indicating that her ANC was on the way up. Although it is still not good enough for school, it was safe enough to be home. If her ANC is above 500 on Thursday, she would receive vincristine and more methotrexate. The latter being responsible for the low counts. We were secretly hoping that she would be too low for the methotrexate as Kristin did not want a repeat of last week. It was rough for the entire family. Sometimes we jokingly ask if we can get time off for "good behavior." They just laugh and say no. Thursday we returned; relunctantly, to Renown for more chemo.... her ANC was 468! No methotrexate, yes! I asked what bearing this had on her progress and they said that the chemo had done it's job and she did not need another hit! Thank Heavens!

I have mentioned Eric Trowbridge in past posts. I am asking that you please include him in your prayers. His transplant is forthcoming and they have some set backs with donors. Thank you so much for remembering Kristin, Eric, and all the innocent children who endure these life threatening illnesses.

Thankfully, Leslie and Darren

HAPPY 18 "YOU GO, GIRL!"

A JOYFUL CELEBRATION!

Darren, Linda, and Jared Lasko


She's going to love this!

Willie and Amanda Hartman
Rob and Kyle
Darren, Cody, Cory Foulk, and JR Hansen

Braden, Garret, Ryan, Derek, Josh
Karen Cox, Jenny and Tim Amundsen
Devery Amundsen, Chris Dugen
LaRae Wilson, Sherry Foote, Diane Feldman

Only the best of friends!

Happy Birthday!

I am finally getting around to down-loading pictures from Kristin's fabulous 18th birthday. After much ado, we were finally able to pull it off. I knew that picking a day and hoping counts would be good was a shot in the dark. As it turned out, we did it in the nick of time as two days later Kristin's counts crashed and we spent the week at recovering. We want to say; from the bottom of our hearts,"Thank you." The evening was beautiful and it was such a joyous celebration for Kristin. I cannot explain to you all how it made her feel in words. Suffice it to say, she felt very loved. We are very grateful to have been able to joyously celebrate her eighteenth year with her and all of you. To have had this date pass without this possibility would be unbearable! Enjoy the pictures.

HOTEL RENOWN?

Tuesday I picked Kristin up from school after the nurse had called. She had a fever of 100.2 and was complaing of the chills. After talking to Oakland we went straight to Renown. She was immediately started on iv antibiotics, and labs and blood cultures were drawn. Soon the fever was conquered. Labs showed that she was severely neutropenic. Her neutrophils were basically nill meaning she was very susceptible to infection. Although the cultures have been negative thus far, it would be extremely dangerous to go home until her counts are on the up swing and recovering. She has a 50% chance of getting a life threatening infection. Dr. Hastings has said that there have been times when patients have gone home with counts like hers and have not made it back to the hospital in time! That is how quickly these patients have can take a turn for the worse. She spoke right to Kristin as she said this. As stressful as this is for her she is in the best place and receiving excellent care from the great staff at Renown. So, it is Friday and she is still in room 528. The anxiety of school, cancer, and feeling like %$&* are taking their toll. Her weight is at an all time low. She is so thin, bruises easily, and finds sitting and lying in bed painful. We are trying all that we can to make her comfortable and help her sleep peacefully. Wednesday she had moderate nose bleeds as we waited for more platelets. Needless to say, we are all tired of this and cannot wait for some kind of normalcy to enter back into our lives. I am glad though that this is not happening in Oakland. At lease Darren and I can trade off at night. I am able to run home in the morning, take care of the boys, clean up, go back to the hospital, get Cody from football, and Wyatt from school, fix something that resembles a dinner and go back to the hospital......yes, normalcy would be a welcome friend!

On a happier note,
Kristin had an absolutely, hands-down, fantastic BIRTHDAY! We wanted to say thank you to you all and promise to get pictures posted and thank yous written as soon as the dust settles!

My love to you all!

"THESE LEGS WON'T TAKE ME ANYWHERE!"

This was the text that Kristin sent me from school Friday morning. The night before she had been getting dizzy when she stood up and she said her heart was pounding. This usually means that her hemoglobin is low and she needs a transfusion. The past week had been incredibly difficult for her and she was trying desperately to keep up with school but just could not muster up enough energy to do so. She has been terribly pale and tired. So, bright and early Friday morning, we did labs and had them to LabCorp by 7 a.m. Around 11:00 Oakland called with the numbers. HGB 7 and Platelets 20. This meant off to Renown for two units of juicy packed red blood cells and one unit to platelets. We arrived at 1:00 and did not receive any transfusions until 5:00!!!!!! I got some movies and Darren brought fried rice to help pass the time. Needless to say we did not get home unitl 2 a.m. this morning. Thank you to all of you who have donated blood products! These save lives and Kristin is with us today as living proof! It is beyond my comprehension why some people claim religious reasons to not transfuse. What an awful thing to inflict on an innocent child! Does not everything good thing come from God? All this aside, Kristin is feeling and looking much better and we are so very grateful for the gifts of modern medicine!

TRYING....

Chemo on Monday was rough, to say the least. Kristin has slowly gotten back up and is still reeling a bit from the effects. She spent Tuesday sleeping and slept until 10:oo this morning, missing some of school. We dealt with a slight fever that could not decide to stay or go throughout Tuesday night. By the morning, it was gone...whew! Eating has become challenging as she is sooo hungry and very much wants to eat, but her stomach seems to not tolerate very much. Soup is a favorite as she says that the warmth feels good in her stomach.

The good news is that there is no chemo until Sept. 22....Yipee!!!!!!!!!!!!!!!!!!!!!!!!!!!!

CANCER S@#*>!

I guess I am not in the mood to mince words.....Kristin had an LP with chemo today! Yes, cancer, for lack of a better word, just sucks!

OFF TO OAKLAND

Kristin and I left for Oakland on Labor Day afternoon. We had anticipated some traffic, but..... holy cow, it took five and a half hours just to get to Vacaville. With all the heavy construction and holiday traffic we averaged 35 mph the entire trip. Kristin ended up car sick just from all the braking I had to do. Our appointment was for 10:00 Tuesday morning. She received methatrexate and vincristine via an iv push and a drip. We drove back to Vacaville and I had the best nap ever! Kristin rested quietly, but ended up feeling very nauseated later in the evening. Wednesday we drove to Alta Bates Hospital in Berkley (actually it is only minutes away from Children's) where we met radiologist Dr. Swift. I had not wanted to go forward with this meeting and honestly it angers me that she has to endure radiation. But, Kristin has three strikes against her that make this arm of the protocol necessary. 1. pretreatment of steroid before diagnosis 2. her age 3. the mll gene rearrangement. As much as we want to avoid radiation, we cannot overlook these factors. I had many questions lined up for him. He looked at Kristin and asked,"Are you an A student. She said "Yes." (most of the time she can be!) He said, "You will still be an A student!" With young children this is never the case. My biggest worry and most of my questions marched right out the door. He explained that her dose would be less than what we thought it would be and that the side effects would be quite minimal. Although she has tested negative for leukemic cells in her cns (central nervous system) this radiation is prophylactic. Meaning that if the cancer returns., the brain is absolutely not where you want it to come back. no kidding.... While we were there we encountered an interesting woman lurking around the front door and roaming the halls. She had some unkind words for us. We kindly let her go her way, but for the rest of the day we had fun teasing each other and making light of the situation.

After our Berkley visit, we returned to Children's and Kristin took her three shots of Peg like a pro. The nurses loved it because she did not tighten her muscles, kick or scream like many of the little ones do. She is amazing. We had to hang around for 2 hours to make sure she did not stop breathing and then we were free to go. We headed right for home so we would not miss Cody's birthday. With the clock ticking, we desperately looked for a bakery when Corrie Hames called. She offered to pick one up and bring it to the house. thanks Corrie!

Kristin tried to go to school on Thursday, but got sick during seminary and came home. She collasped on her bed and slept all day, completely wiped out by the chemo! Friday she was good to go.......Amazing

We love you all and continually count our many beautiful blessings.

SCHOOL IS IN SESSION!

School has begun and I find myself busier than ever. Kristin started getting busy last week with "student body business." She helped with freshman orientation and made 29 various "I love Freshman" shirts for the rest of the student council members. It took her all day , but they were great! She also helped greet the faculty at a breakfast. Ms. Cox told me when Kristin was introduced, the entire faculty applauded. thank you Galena. Darren,and Alex Hames went for a quick trip to wakeboard at Boca and took her and some friends along. She could not get in the water, but it was a great way to finish off the week. The first day of school came and she was up early getting ready. As she and the boys left for the day, I said a prayer that she would find the strength she needed emotionally and physically to get through the day. This day was met with much anxiety, but the doubt and fear appears to have abated for the moment. yes, prayers are answered!

Health wise, Kristin is limping along as best she can. Her HGB has dropped a bit and she has noticed multiple bruises. I did call Oakland. I drew labs yesterday to see what her counts are. I am currently waiting for the results. Except for being absolutely exhausted all the time, she is holding her own.

We have no chemo this week, just labs in anticipation of next week. We are due in Oakland for two short chemo visits on Tuesday and Wednesday. Sadly, we will miss Cody's b-day on the 2nd. These are just clinic visits and not over night stays. Yea! The frustrating part is that these are things we could do here in Reno, but no one will be here to administer the drugs. So, we have to go all the way down there for shots and iv pushes! I am grateful for the things we can do here, but can someone please build a Children's Hospital in Nevada...soon?

Our love to you all!!!!!! Leslie

REEL KIDS

First "big" catch of the day.

Kristin and fellow Keaton Raphael Kids. Also pictured

is Lizzie Dalton (center), director of Keaton Raphael Memorial,

and Angie, Child life Specialist Renown.

The entire group of participants.

We fish, therefore we are!

Our family was invited to participate in "Reel Kids" by the Keaton Raphael Memorial. The day began early in Markleeville, Ca.(yes, we did sleep in a bit, but still made it with time to spare) We met other local families participating and then headed up to a beautiful preserve tucked away in the Sierras. There, we were tutored in the ancient art of Fly Fishing by the most generous, kind, and likeable anglers one would ever met. Each participant then was paired up with their own personal coach and then made their way to the river to find their "spot." I opted to carry my camera instead of a rod as I was excited to capture the moments and scenery. We fished all morning. There were definitely plenty of trout, many of which proved to be more slippery than a bar of soap.(pardon the poor grammar) Still, lots of bites and catches for us all. We headed back to camp for lunch which was enjoyed by all. (Darren forfeited his lunch for more fishing time.) There was a closing ceremony and some very touching words said for the children. We were then invited to continue fishing for the rest of the day if we wanted. Of course we did.Kristin loves fly fishing and she really developed some excellent skills thanks to her fabulous coaches. I am glad she was feeling well enough to participate and that this was a family event we all could enjoy! Thank you Judy,Scott, Kasey, and Todd.

This was a great outing for our entire family. No, hospitals, doctors, nurses, or chemo. Just peace.

Thank you for the generosity and kindness extended to our family and for the wonderful memories.

enjoy the video!

YES KRISTIN, HE DOES

Talk about "Manic Monday!" The day began driving to Renown for labs and hopefully beginning interim maintenance 2. I say hopefully because as of the last lab report Kristin's ANC too low. It needs to be <750.

Once we were there they immediately did labs to check her ANC so we would know whether we could proceed with chemo or have to wait. After a few hours and a movie later (Super Star...sooooo funny!) It was a go, barely. Since she was NPO, fasting and nothing by mouth, it was a long and miserable wait since there were other patients ahead of us. Around 2:45 she went in for the LP with intrathecal methotrexate. She was also given vincristine and more methotrexate via her broviac cath. That is a lot of chemo. She must of gotten a little extra of "something" because when she woke up she was very loopy. Today we went back for more. Three giant shots of PEG in her thighs and then two hours of observation to make sure she did not stop breathing. PEG can have some serious side affects and she needs to be monitored carefully.

THREE PEAS IN A POD .....
While we were there Kristin was able to visit with two other patients close to her age. Eric and Dustin. This was unusual as there are usually much younger children around. Today was different. I found it amazing to watch the three of them make a connection and see themselves in each other's eyes. They were telling their stories, asking one another questions, and for a brief moment they had control of their world, not cancer, doctors, nurses, parents or chemo! I loved the moment and will cherish the picture in my mind of the three lying in their beds, one bald, one hooked up to machines and one munching on a cookie! I wish you could have been there, as they were just ,"Three peas in a pod!"

AND AT THE END OF THE DAY.........
Once we got home it was a very rough night. I will suffice it to say it was awful and I wish I could take all the "awful" away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We finally Kristin got settled and were lying in bed when she softly whispered,"Mom, I love you. I know my Heavenly Father loves me too. I feel it all the time."

Yes Kristin, he does!

STILL TRYING TO RECOVER

I have learned early on that when I get phone calls from a 510 area code that Oakland is wanting to "discuss a plan." There is always a "plan" for when things do not go exactly as expected which in reality is the norm in this business. We did labs on Friday in hopes that Kristin's counts would have recovered from the evil ARA-C and Cytoxan. Although she is finally on a slow upswing with her counts, they have not quite arrived at the point where we can definitively move forward into Interim Maintenance 2 on Monday. rats! But, I have high hopes that the weekend will give her time to recover so that there will not be any delays in proceeding forward. In all honesty it is really a minor blip in the scheme of things and there are much worse things that can happen.

The latest labs show (I got some numbers wrong on the last report, as the anc count was not that high) ANC 486, WBC 1.8, PLATELETS 387, HGB 9.9. All counts are looking good except the ANC, it must be <750.

I am sure many of you have heard of Eric Trowbridge. He is also a Galena student and does not live too far from us. We have had the privilege of meeting both Eric and his Mom on our clinic visits at the Renown. Please remember Eric, along with Kristin, and all the other innocent children whose lives have been forever changed by cancer. We love you all!

BETTER!

yes... better!

After being down for quite a while, Kristin's counts are finally recovering. ANC 960, HGB 9.9, PLATELETS 122, WBC 1600. These are great compared to what we had been experiencing. Although she is still very tired , she can finally get out of the house and do some things with friends... This was the hardest part of the down time for her and really for the last eight months. She has felt disconnected from everything. Understandably, many kids do not know how to talk or approach her, yes it can be intimidating. I wonder if I would have had the courage to do so at that age. In reality all these children really crave is to be treated and feel; as Kristin says, " treat me like a normal kid!" This has been very difficult in so many aspects. 17 is a tough time developmentally to be going through all of this. Doctors and nurses alike have commented that everything from chemo, down time, side effects and emotional impact are more difficult, complicated and challenging with teens. I say that that is surely an understatement! On the flip side, is there ever a good time? editor's note-this is strictly myself speaking, for my daughter, through my experiences only!

Her anxieties about returning to school in October are completely understandable. She is not the same Kristin who left last December. We talk a lot about the future. There are so many great things to look forward to and she has fantastic dreams and goals to capture! In the mean time she takes each day one at a time and for face value. Meanwhile....she is trying really, really hard to

LIVE HAPPY!

NOW MY HAIR WON'T FLY AWAY WHEN I RIDE IN DARREN'S CONVERTIBLE!

After we got home from Renown, Kristin hopped in the shower. I had noticed that she was itching her face in the hospital a few times and had even splashed her face with water. I did not think anything of it, but did make a mental note. However, after the shower, she looked literally sun burned and it was not pretty! The redness worsened and traveled down her neck and chest. While we were there she had spiked a "tiny" fever. (completely down-played as any fever now is never tiny) Luckily, it resolved itself and we were told to call if it rose above 100. I called Oakland about the itching and redness because it was obvious she was having an allergic reaction. We took some benadryl and kept a check on any fever. She danced pretty close to the edge but, luckily she was able to keep her fevers in check and we did not need to be admitted! As of today her counts are as follows, WBC.4,(rats!!!!) HGB 8.8 (wish it were higher,but could be worse), PLATELETS 107 (nothing to write home about), ANC, GARBAGE!

The next day Kristin received a beautiful new head of "real hair." Thank you HAIR CLUB. This was attached to her head with special tape that should stay for days. No synthetic wigs this time. It is brunette, smooth, soft, and long. (sounds like a commercial) "Now I can ride in Darren's convertible and not worry about my hair flying away!", she said. Now, how many 17 year olds can say that?!

THE GOOD STUFF

By Monday morning it was very obvious that Kristin was in need of a transfusion of red blood cells. She said, "I am so tired of being tired!" The weekend was long and she had barely energy to eat let alone get up off the couch. Her HGB count was 7.8 and she was as pale was they come, including gums, lips, fingernails, etc. So, after they did labs and a type and cross, she got the "Good Stuff." After the first unit, her lips began to pink up and by the end of the second unit she looked so much better and was beginning to feel so also. We also received vincristine via an iv push. Kristin's WBC is still low .4, and that means we still have to keep her away from people and places, but I have a feeling it will be recovering any day .While we were there we watched more Doris Day movies courtesy of Marilyn Malvey. thanks Marilyn!

On Saturday, we wanted to get her out of the house because she has been "grounded" for sometime now. So, we got some take out from Bajio and ate it at the park. Then, we headed for the drive and watched X Files in the back of the truck with the Hames. (i would not recommend the movie even if you are a fan, but it was the only movie playing we had not seen) It was a perfect night for a drive-in movie, just the right temperature, no wind! Al brought his surround

sound and we had plenty of blankets and pillows. (actually some of them flew out of the truck on the freeway and Darren and Cody had to run and go get them!) All in all, it was nice to get her out even though she was soooo tired.

RUNNING ON EMPTY...

I was hoping that we would be on an upswing through the latter part of the week, but Kristin's counts are still "in the garbage." I took labs in yesterday. Her WBC (white blood cells) were .2, PLATELETS 49, HGB 7.9! Her ANC was not calcuable. Yes, she is running on empty and is still confined to the house. Although she is feeling so poorly that she would not leave even if she could. So, if we do not get any fevers, we will go in on Monday. Please know that this is because of the chemo and not the cancer. This is a rough time for her physically and emotionally, so please keep her in your prayers. thanks everyone we love you all!

PASS THE PLATELETS

After spending the entire weekend; and then some, on the couch, we were able to get to Renown for some chemo and a platelet transfusion. We have been anticipating a drop in her blood counts because of the recent chemo and this weekend was it. (each dose has a cumulative effect) I can easily tell when her red blood cell count is low. She is very pale, weak, and has headaches. With her platelet count she usually gets tiny nose bleeds followed by not so tiny nose bleeds that will not let up. Our normal platelet count hoovers around 150-300. This morning she was at 11. She will probably go in the next day or two for some juicy packed red blood cells, but was not quite low enough for a transfusion today. Really? I just want to give them to her myself. All kidding aside, I am grateful for the wonderful care she receives.

Thank you again for your support and prayers. They truly are our "transfusion" when we are low!

p.s. many ask how to leave comments, just click on the comment link at the end of each entry and follow the directions from there. you can also click on the envelope and reach me by e-mail.