about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation

Click here to go back to the main page.

Wednesday, March 12, 2008 0:00 AM CDT

It has been so long that I could barely remember the address for Tuli's website. I would have to say that the reason is that life is normal. I guess I just don't have the obsessive need that I had before to spill my guts. Life is "Normal". Thank heavens.

Only thing going on right now is Tuli will be having a surgery on Mar 24. This is actually to correct his ankle where they took the small fibula out of his leg. He has been having pain in this ankle for quite some time, and even though the doctor said "he won't have any problems with it", he has problems with it. His ankle will have to be stapled on one side to impede the growth on that side and allow the other side to straighten his ankle back out. Right now it looks like his ankle is "falling" or pushing inward. Yes, this will affect the length of his right leg to his left leg, and the doctor said the difference shouldn't be more than 1/4 inch. He better be right this time. I would rather be informed than hear what doctors think I want to hear. I don't have time for bull crap.

But, I wanted all of you to know that we are doing great. Life is good. Tuli is still in remission and we always pray that it will be so.

Thanks to all of you,

Janelle

Friday, July 6, 2007 6:45 PM CDT

Well, it has been one jam packed summer full of events! We sent the kids off to Camp Hobe, which is camp for both cancer patients, survivors, and their siblings. We had the Kinikini family reunion, which was tons of fun! We were going to go to Virginia and visit my sister, but that didn't pan out. We had graduations on both sides of the family, as well as graduation parties. We had a Youth Conference for the youth of our local church, which both Lia and I attended. Tomorrow we are going to the local amusement park, Lagoon, for the Candlelighter's Lagoon day. Next week we have a Young Women's rough out camp, for our local church, which both Lia and I will be attending. We have Ben's immediate family's, Family Reunion, which we are planning, and putting on. And I've probably forgotten something or other. So needless to say, my updates here on Tuli's page have taken a back seat to everything else. Anyhow, that is our summer. Our kids had fun at Camp Hobe, and unfortunately it will be their last summer there, their eligibility has run its course, so we are sad about that! I'll see if I can't get some pics posted here from the camp and their other summer activities. I miss my Caringbridge family! I hope you all are doing well, our prayers are always with you! I promise I will try to be better about updates!

Tuesday, July 3, 2007 10:27 PM CDT

Wow, it really has been a long time.

Life has been great. We took a trip to Hawaii in February with the kids. The school year ended without too much fanfare, and summer has been busy, but fun. Tuli is doing fabulously well. His last orthopedic appointment said that his arm should be fine from now on. It's still growing nicely, and he doesn't have to see the doc for another year. Woo hoo!

Lia's hip has also recovered, and she is off of her "no running" prescription. Things overall are just great.

Ben started a new job. After working for the Post Office for 9 years, he quit and got a job at the Chevron Refinery here. It looks like it's going to be a great opportunity for him, and is already been a great blessing.

What do we have left this summer? Well, the 4th of July tomorrow, and a Relay for Life in August. If you're interested in donating to Tuli's Relay...he is on the same team as Devin go to:

acsevents.org/relay/ut/sandy/tuli

Every little bit helps!

Hope all is well, keep your chin up...it does get better.

Love,

Janelle & the Kinikini Krew

Tuesday, February 6, 2007 1:14 PM CST

Hey all, it has been so long since we've updated this page! We really want to apologize and thank you all for continuing to come by and see how Tuli has been doing.
We have so much to be thankful for, family, good friends, and good health.

We want to thank the Ross family for putting Tuli's name on the National Candlelighter's Christmas tree, while they were on their trip to Washington D.C., and hope that your family had a fun and exciting time there! We're so grateful for your friendship, it has meant so much to us!

We want to thank Mrs. Pam for continuing to check up on Tuli and the family and for being such a wonderful inspiration to us! Your caring has lifted our spirits on so many occasions!

To all our caringbridge friends, we love and pray for you all, more than you'll ever know! You know who you are, and know that we haven't forgotten about you all!

Thanks for helping, sharing, and caring about our family.
Well enough of the mushy stuff, even though it is heartfelt.
Next week we are off to Honolulu, Hawaii! We are so excited to be leaving the frigid cold of Salt Lake. Winter has been especially cold here, and the air quality here in the valley is horrendous, you're afraid to breathe for fear that you may catch emphysema, I am serious the air is that bad. So needless to say, we're happy to be leaving.

We are going for vacation, but Ben has a neice that is getting married there, so we figure we'll kill two birds with one stone.

We plan on doing some snorkeling, sightseeing, and shopping. The kids have never been there, so this will be great for them!

I promise to post pics of the trip upon our return, and let you all know how it went.

Other than that, Tuli continues to do the quarterly check-ups at the hospital, make sure that all is still well. He so wants to play sports, but with his arm the way it is and all, that is a near impossibility, and it breaks his heart. But we keep telling him that there are other things that he is good at that he can pursue, and so now he is looking at learning how to play the guitar. He has an uncle that plays, and he has offered to teach Tuli, so we're excited.

I just want to thank you all again, and I'll be making my rounds now on Caringbridge to check on you all, so til next time, thanks.

Tuesday, November 21, 2006 3:28 PM MT

Thanks Mrs. Pam for your recent mailing. Sounds like you had a fun month celebrating Halloween with the kids.

The Ross family and us have an outing planned for next week. We're excited to go spend some time with Devin and Kara. It should be a lot of fun. Thanksgiving is going to be with the grandparents. First we'll hit up my mom and dad and then Ben's mom in the evening. I'm excited because after tomorrow I have 5 days off. Whew, that will be a relief.

Eveything else here is going fine. Lia is still around the house on crutches and in a wheelchair at school. Just 2 weeks left to go with that and she can start walking without them. I have an appointment with the doctor next week.

Hope all is well with each of you. May you have a wonderful Thanksgiving!! We have much to be thankful about!

Love,

Janelle & the Kinikini Krew

Well, Daddy was right. Everything turned out just fine. We never made it to the MRI. We were going to go to a corn maze for Halloween, and Lia fell in a public restroom. She went down right on her hip, and let out a scream so loud I thought she had broken it. She was really in pain. We decided to take her up to the emergency room at.....you guessed it....Primary Children's.

They took her back relatively quick. Probably because she was hysterical and just touching her made her scream out in pain. I wish sometimes that Tuli had been that dramatic, and maybe they would have done more (well, maybe not...I got so frustrated with her sometimes. She doesn't "hack it" like Tuli does).

Anyway, 6 doses of morphine later, 2 pokes one in her hand and one in her arm, a nightmare on the x-ray table with an additional 2 more doses of morphine, and 6 hours later we were admitted to a room. Lia has SCFE. Otherwise know as Slipped Capital Femeral Epiphysis. Your femur doesn't fuse at the top into that round part until you're older. Sometimes when you have a child that is a little more....how do you say it...beefy, chunky, heavy, stocky, overweight....I heard all of them...that femur slips out of that round part. Lia also has a hereditary history of bad hips. She had a second cousin who had the same surgery 15 years ago.

When she fell, it pushed it out even further. The only remedy: surgery to "pin" the hip where it is with screws. Lia had this surgery on Saturday afternoon. We came home on Sunday.

She is doing great. She has gone that last two days without any pain meds, and is finally transferring herself from the wheelchair to the toilet. I think I will actually be able to sleep in my own bed tonight instead of sleeping on her floor.

It's funny, I think if this had happened before Tuli, I would've thought it was the end of the world. But, I'm actually happy. In a way it was an answer to a prayer. We prayed that we would find out what was wrong and that it would be fixed, and after a few months she will be able to walk again. I also dreaded the surgery, thinking that it would deform her like it did Tuli. The surgery had changed so drastically from my cousin's surgery 15 years ago, and they only made a 1 1/2 inch incision. They went in, moved very little, and placed 2 screws. I am so grateful. It's probably going to leave a tiny little scar that you won't see after she's 20.

On a bad note, she probably will have to have a hip replacement surgery in her 30's, and there is a huge chance of this happening to the other hip. But, I can't tell you how grateful that her life isn't in danger, and that she will not be disabled (not that disability makes her unpretty, just that it's not our first choice), but still my beautiful Lia. I'm so grateful.

Thanks so much for the prayers, and the entries and your kind words of support! Alisa, Mrs. Pam, all of you are awesome! Alisa, Devin, Kara, Randy, thanks for coming to see Lia. She talked about it for hours after while we did our nails.

We love you so much!

Love,

Janelle & the Kinikini Krew

Thursday, October 26, 2006 5:50 PM MT

Well, although we know nothing new, I feel much better today. I had a hard couple of days. I was scared, and angry, and all kinds of stuff. But, today I'm much better. It's partly because my dad came by last night to see the girls for their birthdays, and he told me everything would be fine. That sounds weird, but I believe him. He told me he had been praying very hard and that he had been comforted, and I wholeheartedly believe that is true, because I feel it today. I think I was just so angry for awhile there, that the Lord couldn't talk to me at all. I wasn't feeling any peace.

The doctor ended up not being able to get the MRI schedule for today, so like I said, we still don't know anything. We have an MRI scheduled for Monday. I'm praying that everything is OK. Lia came home today and didn't have too great of a day at school. She felt bad because she had to deal with her crutches, and it was her birthday. It's funny, and I hate to compare, but when Tuli went through chemo, I think he probably only cried when they had cut in to his arm. But, Lia, she is definitely more emotional. She's a girl. She deals with things differently. Part of that differently is that she cries things through and then she's OK.

Today my baby is 12 years old. Like I said, she has been nothing but a joy to me, and I hope she is OK. She is a young woman now and not a baby anymore.

Thanks for stopping by. I'll update after we hear more from the MRI.

Janelle & the Kinikini Krew

Tuesday, October 24, 2006 8:52 PM MT

I want to die right now. I'm so scared I cannot even tell you how scared I am. About a week ago, my oldest daughter woke up in the morning and said that her hip was hurting. At first even she said that she must have slept on it wrong, because it hadn't hurt when she went to bed. Now, when you read this story, you are going to think it is so obvious. But really, does lightning strike twice? Anyway...so last night she was crying it was hurting so bad. It just wasn't getting better, but worse. So, today we took her to the doctor. My husband took her. I had to co-op at the kid's preschool. When Ben picked us up, he was kind of moody. I just figured he hadn't eaten. He is diabetic. I asked him about her leg. He said that the doctor was going to call later tonight or tomorrow. We came home, and I helped Lia with a school project that is due tomorrow, and then went on to work. When I took my break at 7:45p, Ben pulled me aside, and said that the doctor had called and had told him that there was an "irregularity" at the top of her femur. What?.....What?.....

Holy hell. If this ends up being cancer, there is something seriously wrong. What was in that house that we lived in? I'm about ready to give up. I cannot do this again. Especially knowing now how it really is. When Tuli was diagnosed, I didn't know what I was getting into. Now I'm all too aware, and I'm scared to death. What is going on with my children? What am I going to do? This is just not right. Life cannot do this to me again. Life cannot alter one of my children again. It's just not fair. I just can't imagine now having another crippled child. Maybe that is terrible to say, but to me it's almost worse that losing her. She is so beautiful to me. She always will be, but I don't want to see that change. I just want to stay the same way she is. I don't want her to be different than she is right now. I have a lot of faith in what God has in store, but really. This cannot be what is in store for us. It just can't. It's not something I can wrap my brain around.

I'm just beside myself right now. I have to hold myself back from breaking down in front of her. She asked what was wrong with her leg, and I told her that the doctors didn't know. Thursday, her 12th birthday, they will do an MRI. Here we go again. Different child, same drill.

I'm in shock. I want to call my mom and talk to her, but I know I'm just going to bawl and bawl on the phone, and I can't do that to her. I mean really, it can't be cancer. It really can't be, right? How is that going to happen? It's someone else's turn. Not us. Not again. Not with a different child. I half expected a relapse, but not with a different child. Not with my Lia.

Please Lord, let it happen with me, but not her. Not my kids. Not my Lia. Please!!! From the time she was born 12 years ago, she has been nothing but a joy to me. I have not had one day of sorrow from that child. She has brought us nothing but happiness, and I can't fathom it.

Anyway, I have to go. I can't sit here anymore and talk about anymore. I'm getting a headache from crying. I had to work until about 10 minutes ago, and getting through those last 3 hrs was torture. I'm wanted to sit and sob, and instead I'm sitting here going "Hi, this is Jetblue, I'm Janelle...how can I help you?" How freaking obnoxious is that? Then I get to hear people whine about how they can't sit right next to each other on the flight. I have a hard time having sympathy for that right now.

I'm going to go and try to sleep. I'm don't know if I'm going to be able to do that right now, but I'll try. I'm just praying my guts out, trying to make a deal with God.

Thanks for stopping by. Hope this message finds you happy and healthy.

Love,

Janelle & the Kinikini Krew

Wednesday, October 18, 2006 5:10 PM MT

Last week we had a great vacation down to Lake Powell. There are still pictures of our trip from last year. I can't really believe that it's been a whole year since those pictures were taken. I guess I need to update the picture album. Once again, things are getting back to normal and I just get swept away in the day to day things. I'm busy. It's good, but in some ways it's not. I don't really have time for things outside of here. I'm constantly running kids here and there, supporting family, helping out extended family, doing 2 to 3 hours of homework a night with my 3 kids, co-oping once a week at JJ and Arla's school, working 24 hours a week and sometimes more, teaching a sunday school class at church, getting Lia and Tuli to church activities during the week, it's hard to keep track of so many relationships. It's hard to sometimes not get caught up in everything. But, it just seems like I don't have enough time. Granted, I do like to sleep in, but you would too if you worked until midnight every night. But still, when someone asks me to do something, I always think "Well, I don't have to deal with cancer, so I have all the time in the world." I don't realize how stressed out I really am, and how I just don't have time to add much more.

Case in point. I just moved to this area. At a church function, I had this girl just kind of come up to me and say , "I'm so lonely, I really need someone to be my friend." My first reaction, "Oh yes, I can be your friend. After all, that would be the nice thing to do." So, I get caught up in this whole "Maybe I'll come over sometime on Wednesday and we'll do something." Mind you, I'm not one to plan way in advance. My schedule is so tight, that I don't really know from one day to the next how it's going to be. I'm just kind of like a play it by ear person, so I just said "Maybe on Wednesday, if I have time." Well, it didn't happen. Maybe because I didn't prioritize it, but really, I work so much and don't get to spend a lot of time with my kids, that sometimes when I have a minute, I just want to be with them here at home. This girl calls me later that evening and wondered why I hadn't come to her house promptly at 4:00p. I thought the whole thing was weird. After all, we really didn't set up any specific time of any specific appointment.

I'm probably totally wrong in this whole thing. I guess I don't try. It's just that right now, I feel like a guitar string that is strung to the limit. I can't be tuned any more.

Well, that was my tangent for today. I just felt like unloading it. I'm actually being very retrospective and trying to think how I can make myself better, but the truth is my family is A-#1. I like to take my extra time to really be a Mom to them. It's hard when you work, because you feel like the time you do have with them is so precious, I don't want to go do just anything. I want that time to be for them.

On another note, Tuli's Onco doc had great things to say about his arm. So much so, that after one year, Tuli no longer has to wear his sling! Yeah! Those slings were more expensive than his clothing. Anyway, he said that the bone growth is just getting better and better, and that in 3 months he might even be able to take the brace off. It was such great news. It's taken a whole year this time to get to this point. I've reminded Tuli that he still has to take care of his arm. He goes to football games and watches his cousin who is the same age play. He wants to play so badly. But, it's really not to be. I keep telling him that he can do other things, and he has said many times in the last few weeks that he wants to learn to play the guitar. I think I'm going to see about getting him some lessons. Maybe he just needs his own "thing" so he can stop feeling sad that he can't play with the other kids.

This summer, we had some friends from Germany come and visit. The mother Verena (my oldest has her name as her middle name - Lia Verena), her husband Yenz, and her daugher Anna who is 10 and her foster child Sven who is 7. While she was here, her leg started to hurt. We didn't think anything of it. But, when she returned home it didn't go away, so she went to the doctor. They told her she had breast cancer. When she first told us, we didn't know much, but just last week they said it has metastisized and is now in her spine. We learned about that while driving to Lake Powell, and for 3 hours I just cried. It's so not fair. Did I tell you I hate cancer? I hate it with a passion. I've never hated anything so much.

Well, we'll be up for scans again the first week of November. Don't know when scans will ever end. I guess never. Ben is trying to start some business ventures on the internet. I hope it works and takes off soon. It's what he has always wanted to do.

Thanks for stopping by and checking up on us!

Talk to you later,

Janelle & the Kinikini Krew

Saturday, September 30, 2006 7:37 PM MT

OK, I know. I know. I have been seriously remiss in not updating Tuli's site. I really don't have any good excuse. School started and it seemed like my time just got cut in half. I'm working right now and seems like I work a lot. There's just not enough time to do anything.

The kids are liking school. Last scans came up clear, and all is well. Thanks for stopping by! I'll update more when I have time later.

Love,

Janelle & the Kinikini Krew

Sunday, August 13, 2006 10:13 PM MT

Where has this summer gone? It seems like we moved in the house and lost all track of time. I've been working a lot. That always seems to bite in to the time I have. We've been settling in, and still getting unpacked....so I guess we've just been chillin'. I actually love the summer. Not to much to worry about. No real schedules to keep. It's been great.

Tuli did have his scans last week, and came up clear and clean. They also said that the node in his lung wasn't even there, and that it was never there, and that they had made a mistake...what? Weird. Oh well, I'm just glad that it's gone. Osteo doc says the arm is healing still. I should be grateful that he's just alive, but in a way I'm very sad right now. The thing that I've been dreading is happening. Tuli's body is growing and his arm is not. It's become really noticeable to me lately. I thought it would be several more years maybe even in to his teens before this became an issue. But it's there. It's obvious. And now the reality for me is that the cancer has really changed our lives forever. I'll get to stare it in the face every day of our lives.

Kids start school in August 28th. Things have been tight for us, so no school clothes right now. I hate sending my kids to school like that. It's so unfair. I just wish I could at least send them to school on the first day with a new backpack & outfit. Oh well, I'll find a way I guess.

Today our whole family spoke in church. Arla, Lani, Tuli & Lia all spoke and sang a song. Ben and I spoke, and Ben's family came and sang a Tongan hymn. It turned out very nice

Anyway, that's pretty much it. We didn't make it to the Relay For Life, because we had some previous plans that night.

Thanks for stopping by, hope all is well with each of you!

Thanks,

Janelle & the Kinikini Krew

Friday, June 30, 2006 5:28 PM MT

Moving has been an interesting experience. In 13 years of marriage and having children I have never moved. I have accumulated years of junk, and it has been very cleansing to throw some stuff out. Now Ben on the other hand....he doesn't like to throw away anything.

Anyway, I made a momentous step today. I finally threw away all of the heparing flushes, sodium chloride syringes, claves, lines, etc. to Tuli's port. I also threw away about 10 or 15 prescription bottles full of medicine. I have just held on to those things just in case. I finally threw them away in a test against fate. I hope fate proves me right.

Sunday was Ben and my 13 year anniversary. I can't believe he's held on to me this long...poor guy. Anyway, it's been tough many times, but I wouldn't trade it for anything. It's made me who I am.

Lake Powell was lots of fun, but very tiring for me. I felt responsible for everyone's good time, and wasn't really able to relax. I need a vacation now to rest up from the trip. I hope everyone had a good time. I know my in-laws were a little shocked at the primitive environment down there. But, after all, it is the dessert and it is roughing it. I don't think they believed me that it was hot, but it was 104 degrees every day.

Well, Tuli is calling me for something about his arm. It has become very swollen the last few weeks and is worrying me a little. I hope everything is ok. We have an appointment in a couple of weeks.

Later,

Love,

Janelle & the Kinikini Krew

Monday, June 12, 2006 9:12 PM MT

OK Alisa, here it is. Sorry it's been awhile. I haven't had internet for the last week. We have been moving 13 years worth of our life to Sandy. For those of you who are not in the "know" that is a suburb of Salt Lake and is about 20 minutes from city center. We have some nice digs out there and I'm excited to be moving into a newer house. Yes, it was a quick decision, and yes it has turned out better for us to be in this house in this place than to be in our house in Sugarhouse. The kids love the new place and Lia finally has her own bedroom. She's only been asking me for the last 3 years!

Everything is good with Tuli. We went to Raging Waters on Saturday for the JetBlue party. The kiddies had a great time. I bought these tickets before I knew we were moving this last week, so it was a hectic time to go, but the kids needed a break after all the packing and moving. I'm still unpacking boxes and will be for probably the next month. Moving is hard work. No wonder I haven't done it for the last 13 years.

Well, thanks for everyone who stops by and checks on our little family. Things are good!

Love,

Janelle & the Kinikini Krew

Wednesday, May 17, 2006 8:37 AM MT

It was 6:45 in the morning on Mother's Day. I couldn't believe the kids were up that early. After about the third time I heard giggling from the other room, I told them in not so nice words to go upstairs and let me sleep. A few minutes later I heard a voice at the bottom of my bed.."Mom, I don't know where to set the tray." The fare included cold, soggy eggo waffles with syrup. Crispy bacon that can break a tooth off cooked just a little too long in the microwave. Warm milk that had probably had a least a half hour of setting time.

I actually wanted to sleep, and wasn't even hungry. I thanked them, and told them to set it on the edge of the bed. They went upstairs and I started to eat. The meal had looked cold, unappetizing, and downright torturous. But as I started to eat with the biggest smile on my face.....I realized something....

it was the best breakfast I'd ever had in my whole life.

Hope each of your Mother's Day was wonderful as well!

On another note:

THE ARM IS HEALING, THE ARM IS HEALING, THE ARM IS HEALING!! It is healing very very slowly and not fast enough for me, but it is the most encouraging news we have received on it for some time. It is actually doing what it is supposed to do, and although it is going to take some time to completely heal, it is on it's way. I'm very happy about that. I was dreading the appointment thinking that it was going to be something bad.

Not much news otherwise. We are excited to have a BBQ this friday with some caringbridge friends. We're going to Devin's house and Rosi, Parker, and Mrs. Pam are going to be there. Should be lots of fun. We can't wait to meet you Mrs Pam!!

Love,

Janelle & the Kinikini Krew

Thursday, April 13, 2006 8:22 AM MT

Hi Everyone!

Well, sorry it's been awhile. Everything on the Tuli news is still the same. I haven't heard any complaints from school at present, so I'm hoping that means that things are a little better. Not necessarily so. His teacher isn't the queen of communication, but then again I've kind of given up on the situation with her this year. The kids are out for spring break next week, and then they have just over a month of school. I'm just trying to get his neuro-psyche test done over the summer so we can try something new next year with a new teacher.

The only other news is that Ben and I used my flight benefit (finally) and took a trip to Hawaii with my parents last week. It was a blast. I love Maui, and now officially want to live there. "Slow down man, this ain't the mainland", was the motto. We went there to see my brother who lives in Kihei, Maui. We went up to see the crater (Hale'akala), went to the beach, went boating & snorkeling, saw whales & sea turtles, and had awesome food! After a few days in Maui, we flew over to O'ahu to go to the PCC (Polynesian Cultural Center) and see the Arizona War Memorial (Pearl Harbor) and the Battleship Missouri. The Arizona was an awesome experience. Just to be in that place where so many perished for freedom was an extremely moving experience. I can't wait to go back again. We're thinking of maybe taking the kids next year. But, like all adult trips, Ben and I thought it was awesome fun, but for kids they would be whining the whole time to go back to the beach. They're not big on site-seeing and all that jazz. We would go for a strictly swimming trip. We'll see.

In a few months we have our annual trip to Lake Powell. It's going to be in June this year, and we're combining it with the Kinikini Reunion. So, there are going to be 40 or 50 people on this trip. Should be a blast!

Thanks for stopping by! Hope all is well with each of you!

Love,

Janelle & the Kinikini Krew

Monday, March 20, 2006 4:12 PM MT

Well, life can never be easy, right? I called the neuro doc to reschedule the appointment because it was going to interefere with my work. When I spoke with them I said "I have to reschedule a neuro-psyche test". The lady said "We don't do neuro-psyche tests." Ok, then what the heck testing were we scheduled for? How frustrating. I don't know what they were going to do, but it wasn't for what we needed. I had explained the whole situation to the lady that was scheduling and I don't know what the heck she was smoking. Anyway, so we cancelled that appointment, and started calling around. After about 16 referrals to "wonderful" pediatric neurologists, I found none that were on my insurance plan. The ones that are on my insurance are "for adult neurological patients only." This is sooooo frustrating. It's like children are a part of another species. "Oh, we can't accept a child species.....they have a completely different brain from older people species." It's weird and frustrating all at the same time. Finally I decided to try and go through the hemo/onc clinic at PMC. I called and left a message. They said they would have someone call me back. My first thought was "OK, now I'm going to have to wait 2 weeks and try calling back 4 times before I get someone to talk to me about this." Amazingly enough, I got a call back within an hour and spoke to one of the nurses who has already tried getting a hold of our social worker at PMC. I was excited about receiving that call so soon. Hopefully it continues to be a good experience and we can get something done for Tuli.

Well, this is the update on our battle to become a member of society again. I can't believe that there are not more options for these kids. It's so frustrating. Please, they're made the same way.

Thanks for stopping by.

Love,

Janelle & the Kinikini Krew

Friday, March 17, 2006 3:30 PM MT

Hello everyone.

I know we don't really update very often, but the truth is, there is just not too much going on. Life is pretty normal. We did go to the bone doc yesterday, and news was the same. The arm looks the same. In some ways that is good, but in some ways also frustrating. I want some bone growth! I've started Tuli on some supplements that are supposed to help bone growth, and gotten back on his bone stimulator. For awhile, I didn't even do the stimulator because I was so frustrated. I had been so good about it before the last appointment and it hadn't made any difference...so I went on bone stimulator strike.

Well, Tuli is doing pretty well. We are having some problems in school, behavior-wise. He wasn't the world's best little angel before all this, but he never got the kind of citizenship scores that he gets now either. His academics are ok. But, before all this he was at the top of his class for math, and now he's just average. There's nothing wrong with average. I've been chalking it up to the fact that he was out of school for so long. But, I have this small fear that there really is some sort of brain function that has been altered. After talking to Alisa at length about it, I realized that I have to face it now, and not wait until later. If there is a problem, we have to address it today and not pretent like it's not there so it can get worse. After some prodding from Alisa, I got Tuli scheduled for a neuro-psyche test. It's not with Primary Children's. I wanted to do it there. But, of course, insurance always plays a huge role in these things, and they say that Altius won't pay for the testing because they are not in-network and the test costs $1400-$1600. Plus, there is a 4-5 month waiting period. Even if Altius paid out-of-network, my portion would still be $300-$500. I don't really have that right now. So, I found another pediatric neurologist in St. Mark's and we have an appointment with him next week.

Well, much love to you all! Have a happy St. Patty's Day.

Love,

Janelle & the Kinikini Krew

Wednesday, February 8, 2006 7:49 AM MT

Well, the appointment went OK. I wouldn't say I'm discouraged, but a little disappointed. After seeing so much bone growth right after taking his cast off, there is no more improvement. It looks the same. Also, the plate right at the top of his arm has moved about a millimeter or two. It's so frustrating, because I know that Tuli is really trying his best and really has cut out a lot of activity that he used to do. I've really put my foot down this time, but if it doesn't work this time, I just don't know what I'm going to do. Besides the usual normal everyday movements, Tuli really isn't doing much more than that. I know that he plays a little bit of ball bounce, and stuff like that at school, but besides putting him in a glass box, I don't think I can keep him down much more. I cannot get him to sit still for a year until this heals. The arm even moves a little when he's just walking, so it's just not realistic. I have had so many people around the valley say what a great doctor his orthopedic doc is. And, I think they're right. But, I'm wondering if the method that he chose to fix his arm just isn't the right choice for Tuli. I've really tried to stick by this decision with how much pain, time, and effort we have put in to it, but if I can't get this last graph to take, then we might just have to do something different (i.e. prosthetic, etc.). I'm just so frustrated right now. I'm putting the stimulator on his arm twice a day and it seems like it's not doing anything. I'm tempted to tell Dr. Scott to put his arm in a cast again for 5 weeks or so to allow the stimulator to do it's best work. Maybe I just need to pray, pray, pray. Please, this was supposed to be over by now, right?

Anyway, everyone else is doing fine. Ben and I are just working (what else). I've got so much remodeling I want to do this summer, and since we're getting a little warm spell, I decided to go rip down some walls downstairs in Lia's room (Did I say room? It's more like a large closet), and start building her bed that I've said I'm going to do for a year. Her room is only just long enough for a twin bed and just wide enough for the twin bed and about 2 feet of walking space. I told you it was a closet. She wants her own room, though and doesn't want to share with the little girls anymore. I'm going to build her bed up like a bunk bed but with no bed underneath. That way she can use the floor space under her bed for her desk and dresser and things like that.

Well, so much to do and not enough time to do it.

Thanks for stopping by!

Love,

Janelle & the Kinikini Krew

Wednesday, January 25, 2006 2:50 PM MT

Well, thanks to everyone for their well wishes with the theatre troop thing. Unfortunately, Tuli backed out at the last minute. He practiced and everything, but when it came time, he said he didn't want to do it. He was pretty adamant about it, and I wasn't going to force him. I told him, there would be other boys trying out and he didn't have to feel embarassed, but he didn't want to do it. I don't know if his friends talked him out of it or what, but it was his decision for whatever reason.

Lia did an awesome job, and got in to the troop. They were so impressed with her solo, that they decided to have her sing it in the program they are doing the end of March. She is going to be singing "Castle on a Cloud" from Les Miserables. She is also going to be in other bits and pieces from broadway musicals. I'm excited for her to have this opportunity to try to overcome some of her shyness.

Everything is well here. I'm still down to one car, which makes it even more interesting now trying to get Lia to school early 2 days a week for rehearsal. Hopefully soon I can get my van fixed. A friend of mine who had been gone just got back in to town, and he's a mechanic, so I'm very excited to have him here. I'm sure he'll come up and take care of it for me next week.

Anyhoo, thanks for stopping by. Tuli's next appointment is with the Orthopedic on Feb. 2. We'll see how his arm is doing then. Hope all is well with each of you!

Love,

Janelle & the Kinikini Krew

Tuesday, January 17, 2006 10:16 PM MT

The news was good. Apparently, they were looking at two spots over the last couple of months. One in his lung, and one in his lymph nodes in his right armpit. I got a little confused, because at our appointment in August the doc talked about the lymph nodes, but nothing about his lungs. Then on a follow-up 6 weeks later, the other doc said something about a node in his lung that they had been watching. Ben went to that appointment, so I wasn't there to question them about it, but I did question them about it today. Apparently, there was a spot in his lung, but it is unchanged and the lymph nodes are a little large. I think the lymph nodes are due to all of the surgeries and stuff we've had on that arm. You can see that arm is still swollen months after surgery. It's just a very inflamed area and will be for a long time. But, the node has not changed, and there are no new ones in the last 6 months, meaning there is no sign of metastatic disease. Also the spot they see is very vague and hard to make out, and also has no fluid lesions. So, the news was relatively good. Nothing new to report (thank goodness).

A funny thing happened. The Physical Therapist came in the room, and besides talking about the arm, she actually started telling me that Tuli needs to go for a walk a few times a week. Well, let me see when I'm going to fit that one in. He is getting heavy. I know he needs exercise, but what irks me about these people is sometimes they just don't get it. I told her that I work 4 days a week, and I also have 4 other children and a household to take care of, and that sometimes there just is not time. She didn't get it. She was like "Well, maybe you can get everyone up and go for a walk." I felt like asking her if she thought I was fat, too. It was just annoying to me, because she wouldn't just say "Well, I can understand about being busy. Sometimes there isn't time. But, if you can, that would be great". I was ready to bust out with the "There are worse things in life than being fat....like having cancer." I got that line from Tuli's dentist. He said "Well, there are things in life that are worse than cavities...like cancer." I enjoyed that one.

Tomorrow it's back to work. It's funny, the longer you have off, the less you want to go back. At least that's how I feel. I like having extra time.

This Friday Tuli and Lia are going to try out for a theatre group at school. Lia is excited and has been practicing her solo all week. Today I'm going to show her some dance steps and work on a little number she can show them. I'm hoping they both get in. I think it would be great to get them involved in something like that. Ben was worried because Ben is a "manly man" I guess you can say, and he jokingly said "Oh great, now Tuli is going to be a theatre kid." I said, "Well, he can't play football anymore, so he has to do something." I really think deep down inside Ben thinks Tuli can play football one day. He was just so looking forward to it before all this happened.

Well, March 19 will be our two year anniversary from diagnosis. Time flies when you're having fun. Life sure can get away from you. Thanks to all of you who have been here for us, and continue to support us.

Love,

Janelle & the Kinikini Krew

Sunday, January 15, 2006 6:08 PM MT

Well, we finally got scans scheduled. Tuesday is the day. I'm a little nervous. Probably more so than I used to be. Everything is just going so well right now. Besides his arm, and the restrictions with that, Tuli's life is downright wonderful. He's doing well in school, and I think his citizenship has gotten a little better (hopefully, I still have to talk to the teacher, but he says he's doing better, and I believe him). When he went back to school after the new year, he didn't have his cast on, and I called his teacher to let her know. I also let her know that his writing will suffer, and that is to be expected (in other words, don't mark him down for it). I had called the school to arrange a 504, but never heard back from the lady. It's possible she called, and I didn't get her message. Then, it was the holiday, and I figured we'd take it up again after the new year. So, I guess it's time to get on it again. She said they were going to arrange a meeting with the teacher, principle, and parents. Yipee. I can't stand his principle either, we go back a long way, from other issues. Oh well, bring it on. I can take her.

Right now we are out of town. We decided to take the weekend and get away. We are up in Logan. It is snowing out like no tomorrow, but the kiddos are having fun. We've been out to eat, and have gone swimming a few times, and tomorrow we're going to go bowling and skating and stuff. It's been a nice little time away. We have a nice hotel room with 2 queen beds and a hideaway, so no one has to sleep on the floor...bonus! We'll be back on Monday night.

Thanks everyone for stopping by. Hope all is well with each of you. Have a great week!

Love,

Janelle & the Kinikini Krew

Sunday, January 8, 2006 3:34 PM MT

Well, here is that much awaited update. The holidays just kind of got us caught up, and we didn't have much time to do anything else. We're pretty much partied out, and have already decided to boycott all parties next year. Ben's family had the twelve days of Christmas, so for 2 weeks before Christmas, we were at the Kinikini's every night exchanging secret santa gifts. They also put on a little Christmas pageant just for our little family on Christmas Eve. It was fun, but a lot of work. Then, on Dec. 26 we had a potluck at the Kinikini's.

For the new year, we had a grandkids party at my mom's house, and the Kohler party on New Year's Day. Then we also had the Kinikini Reunion on Jan. 2 for all of the extended family. So, all of this was a lot for us.

The one thing I really loved about the holidays this year, is that they all fell on Sunday. This actually allowed us two days to celebrate the holiday. One to just stay home (Sunday) and one for parties and gatherings (Monday). The kids also had a wonderful Christmas, and the Lord provided a way again for them to receive some nice presents. Tuli got the video games he wanted, Lia got her CD player, Lani (My little Diva) got her karaoke machine (although I think that it was really for Ben since he spends so much time on it), Arla got her Barbie and the Magic of Pegasus dolls, and JJ got that big car. It was great. Last year we had a sub for santa, so this year they didn't even get half as much, but hey, we got it all by ourselves, and appreciated it so much. It's not about how much stuff, it's the spirit that counts.

Anyway, Tuli went in to his Orthopedic doc just two days before Christmas and got his cast off. There was great news also, and there is new bone there that is growing in. It's new bone though, and I have to stimulate his arm twice a day with the bone stimulator. It makes me so nervous. I don't even want his arm to move at all, and taking it in and out of the brace is stressful. We have also banned Tuli from outdoor sports at school. That was hard. He loves to play football and soccer, but no more. He has to play four square with Lia and her friends and I know he hates it. I put his arm in a brace, and a sling, and then I also strap it to his side with an ace bandage. Sounds like overkill, but not for this kid. I'm hoping that we don't do anything to cancel out all of the headway we've made in the last couple of months.

Well, I'm also extremely frustrated right now. I have called Tuli's Onc clinic 3 times this month to get scans scheduled for him. Each time, they have said that they will schedule them, and get back to me. Each time, I have heard nothing back from them. They just don't give a crap. I guess when you deal with cancer kids all day long, a certain part of you becomes immune to it all. I really think two things can happen. You can start to care too much, in which case you have to get out of it or it eats you away on the inside, or you can just start to not give a crap and that way you survive. In the case of the later, it's hard on the patients who want some caring and feeling from their "caregivers". At any rate, I really am getting nervous not having this kid scanned again with that node in his lung. If it comes up as cancer, I think I going to sue them for negligence. The scans are over 6-8 weeks overdue.

I am still working at JetBlue and I'm getting used to it. I really hated it at first, until I started to learn how to deal with people and their issues. Ben is still at the post office, and still trying to get the Diabetes under control, although it is much better. The kids are all doing well in school. Lia is taking violin through the school district, and Lani loves her teacher. Arla enjoys preschool 2 times a week and can now write her name, Dad, Mom and JJ.

If you have a moment, please pray for our friend Devin (caringbridge.org/ut/devinross). He is having a hard time right now, and needs lots of blessings.

Well, hope all of you had a fabulous holiday season. Time to get back to reality and 2006. We love you all. Thanks for stopping by to check on us.

Love,

Janelle & the Kinikini Krew

Monday, December 12, 2005 1:13 PM MT

Hello everyone! Not much to report. We've had some illness this past week, and it seems like the head cold just won't leave our house. Lani seems especially hit with it, and has missed 3 days of school. I just can't get rid of her cough.

The Christmas season is creeping up quick. Only just under 2 weeks until Christmas. I'm not sure I'm going to be done. My van broke down last week, which has limited the time that I'm able to leave the house and get things done. It's hard to be down to just one car with all these kids. We don't even fit in my Taurus. Hopefully I can get it fixed soon. I'm trying to get my brother-in-law to come do it. It's the line between the gear shift and the motor, so thankfully the car will still start, I just can't get it from park to drive, teehee.

Well, I'm counting down the days to Tuli's appointment with Dr. Scott. Only eight days left and maybe the cast will come off. Hopefully everything is healing up nicely. It seems like I'm more excited for it to come off than Tuli. He never even says anything about it. He's such a trooper.

Well, much love to you all! Hope your holidays are bright!

Love,

Janelle & the Kinikini Krew

Friday, December 2, 2005 3:10 PM MT

I had a little scare last week with Tuli. He woke up with his jaw swollen. My fear was that it was his perotid gland, and that was going to smell trouble. I took him to the doctor, and he said that it wasn't the perotid, but just a lymph node and took some blood tests just to make sure. The CBC and the LDH came back normal, so everything is good right now. That's kind of a relief.

Everyone is doing fine. Just working, going to school, doing the everyday things to run a family. I got the Christmas tree up yesterday, which is probably the earliest I've ever done that. I'm just really in the holiday spirit this year, and I'm excited for Christmas. I'm excited for the kids to get out of school for a few weeks. I'm excited for Tuli to get his cast off (hopefully on the 20th, just before Christmas). I'm hoping the surgery worked. It's just a great time of year.

I am arranging a 504 with Tuli's school. It's something I've been putting off, because first of all I wanted to see if he needed it. This last teacher conference made me realize that it is most likely necessary. It will be mainly for his handwriting, which has suffered, but we are also going to talk about his citizenship, and I want to cover future issues like "Chemo-brain" as they like to call it. Tuli says that he has done so much better, and I'm sure he has, but we're going to monitor it. His "goofing off" really has been a result of having such a crappy year and having no fun, it's like he's trying to make up for lost time. I asked him if that was the case, and he got a little smirk on his face and shook his head yes. It's like he's just trying to take advantage of life by playing. I told him that was great, but that there is a time and a place for everything.

Have you ever decorated a house for Christmas with several small children around? If they take another ornament off the tree, I'm going to scream!

Take care,

Love,

Janelle & the Kinikini Krew

Friday, November 18, 2005 10:11 AM CST

Last night we went to the kids Parent-Teacher conferences. They all did great. Academically they are right on course. I'm amazed that with all Tuli's gone through, he just jumps right back in and doesn't miss a beat. Especially after missing what accumulatively is more than a year at school. I think his reading has suffered just a little, because he used to be above grade level and I think that now he is just about on grade level, so that's a little frustrating, but I'm just glad that he can still learn new things because there is always that fear with me that he will have some kind of learning disability with all the chemo he had. I really don't like his teacher, either. She is younger. In her 20's. I was amazed that a 20-year-old could be that....what do you call it?....spinster? She didn't seem like she even slightly understood what he had been through in the last year and actually gave him a lot of "N"'s for his citizenship (N is "Needs Improvement"). I guess that's OK. I didn't really care. She said that he laughs too much, and isn't serious enough. Well, thank heavens!! I understand that he needs to know when to chill out and work, but really, 6 N's? I really feel there are some teachers that expect kids to sit for 6 hours a day and not talk the whole time. There needs to be some point of realism. I guess he had one instance where he was teasing one of his friends, because his friend liked this girl. Apparently it bothered this child's mother who called the school (why hadn't I heard about any of this before). Because of this one instance in 3 months, she gave him an N for respect. He's never gotten that many N's in all the years he's been in school. Sometimes it's just hard too, because the cultural difference that he has to deal with. He goes down to his cousins and they tease each other unmercifully, and then he goes to school, and when he pokes fun there we have parents calling the school. I keep trying to explain to him that there are certain boundaries that his Tongan family doesn't keep that he needs to keep in other social situations. Oh well, 2 years ago this would have really upset me. Now it's just a little glitch. Not such a big deal. Something that can be dealt with. Tuli needs to give a little, but his teacher needs to give a little. The more I think about her, the more I don't like her.

I love, love, love Lani's teacher. This is the same teacher that Tuli had the year that he was diagnosed. She came for a whole year and tutored Tuli. Now, there is a teacher that instills a desire to do your best. When Tuli was in her class, she praised how smart he was, and how brilliant his mind was, and how he was such a good kid. She never dwelt on the other things that I know he even struggled with there. I know that he sometimes teased, I know that he goofed off sometimes, but it was never her focus, and he excelled there. I thought it was just Tuli that she did this for, but when I went in for Lani, she praised Lani's good points, and said what a great kid she was. She is such a great lady! She said that in 3 years she is retiring, so Lani will be the last one that she will teach. I'm so sad about that! Miss Kate, we love you!!!

Well, just in case you're all thinking that I didn't care if
Tuli was mean or goofed off in school, I did give him a little lecture about being a better citizen. He's going to try and work on that. But, he's still such a good kid.

Thanks for stopping by. I'm still in shock knowing that it's so close to Christmas, and don't have one thing done. Of course, that's nothing new for me. I just never have the money to start, and hope that I can make a good Christmas for my kids this year. They need so much, and I'm not going to be able to get even half of it. I keep telling myself it doesn't matter, but oh well.

Love ya,

Janelle & the Kinikini Krew

Wednesday, November 9, 2005 5:40 PM MT

All is well in the Kinikini Household. Tuli is doing well. We went on Tues and got a hole put in his cast so that we can stimulate his arm bone twice a day. It still looks the same on the x-rays. We will know in about 6 weeks if the surgery worked.

Lani's arm is still hurting her. I have an appointment with Tuli's doc, Dr. Scott on Tues. It was the earliest I could get in, and I hope that everything will still be OK with her. She wears a splint on it. Otherwise, it is really painful. I'm so ticked off at the doctor that casted it before. I really think she took off that cast too soon. So frustrating.

Anyway, thanks for stopping by. We're doing great.

Love,

Janelle & the Kinikini Klan

Monday, November 7, 2005 2:10 PM MT

I had a great week last week. On Thursday, Ben and I went to the temple. It was such a nice, peaceful experience. Nowhere else in the world can you feel such a peace in your heart. It's like being in heaven. You go in there and everything is so beautiful, and everyone is in white and I really think that it is a lot like what heaven is going to look like.

Sunday, I went to church, and there was a wonderful lesson on Missionary work. The teacher challenged us to bear our testimony of Christ and to reach out to others and let them know about the gospel and what a blessing it is in our lives. I accepted the challenge, so I've decided that I'm going to bear my testimony here.

I can honestly say, that I would have had a very hard time throughout my life without the gospel of Jesus Christ. It truly guides me in my life and gives me comfort in times of trial. Because of the gospel, I've never had to guess what is right and what is wrong. I've never had to wonder why we have trials, and why things happen in life. I know that we are here for a purpose, and that is to learn and grow and be tested so that we can return to our Father in Heaven. The gospel not only helped me, but gave my son a grounding through his trial. It allowed him to understand that what he was going through had a purpose. That it was his "test" in life. That God and a purpose for him and that no matter what happens we need to trust in him. There are no mistakes for God.

I also have a testimony of the Book of Mormon. The book of Mormon truly testifies of Christ. Over and over the prophets of this book talk of a Christ, of a Savior who will come. Towards the end of the book, Christ does come, and appears to the people in the Americas (ancestors to the Indians). I believe that this book was preserved by God to be brought forth in this time to guide us and teach us the will of God. I believe that when the apostles were taken from this earth, that the Gospel of Jesus Christ was also taken, and that there was a great apostasy and a darkness that was left on the earth. I believe that because of this, the gospel needed to be restored, and that God did not choose a powerful, learned man, but a young, humble farm-boy named Joseph Smith to restore that gospel.

I believe that we are eternal families. That we are striving to be our best so that we can live together forever with God. This is why temples are so important, because we are sealed there for time and all eternity.

This is but a small part of the testimony I have. I share this with you, not to deceive, or confuse, but to share with you the greatest joy of my life. To know with a surety that God lives, that he loves us, that he knows each one of us individually, and that he can truly help us in our lives. I would be seriously remiss if I didn't share such a wonderful thing with everyone. The gospel is me, without it I am not Janelle. It explains a lot about me, and why I think, feel, and do the things that I do. I am not perfect, but trying daily to do what is right.

I say these things in the Name of Jesus Christ, Amen.

If you want to know more you can go to This Website, email me, or read the Book of Mormon. I Love each of you!

All my love,

Janelle

Tuesday, November 1, 2005 4:30 PM MT

Where has this week gone? It seems like with Halloween, and Lani's birthday, and everything that it just disappeared. Well, I've also been taking care of Tuli and that has been a little time consuming. Plus, I haven't been working, and when that happens, it seems like time flies. I'm on the phones right now, and boy was I dreading having to work again. Only 5 1/2 hours to go!

Tuli is doing amazingly well, but then we knew that would happen, right? Nothing keeps this kid down. My parents brought the wheelchair, and I had to force him to use it for Halloween. But, he had a fabulous time. He went as the screamer (again). We had a trunk or treat on Saturday, and a big family party on Halloween where he went trick or treating with all his Kinikini cousins. They had a blast! Sunday, Tuli gave a talk in church. Along with Lani's sleepover on Friday, a fun time was had by all.

Thanks everyone for your well wishes and all your support. Hope you had a great Halloween!

Love,

Janelle & the Kinikini Krew

Wednesday, October 26, 2005 1:28 PM MT

Tuli's surgery went well. It was supposed to be only a 2 or 3 hours surgery, but ended up going 4 hours. They had to take that bone graph out of his hip, and that has been very sore for him. We just got home today, and he's pretty stiff and can't move too much. We got home just in time for Lia's birthday today. She is turning 11 years old, and in a minute I'm going to make a cake for her. She will be so surprised and happy when she comes home from school.

Other events this week. Lani's birthday on Sunday, and Halloween on Monday. My mom and dad are bringing down a wheelchair for Tuli so I can wheel him around for trick or treating. We don't want to miss all that.

Tuli is just going to hang out and on Tues. next week he will get yet another spica cast on his arm. That's the almost full upper body cast. It will be on for at least a month and a half. Also, down the road we're going to still have to fix that broken screw in his ankle.

Well, Ben is doing OK. He's done pretty well with his diet, but his glucose is still off the charts.

Thanks Alisa, Devin, Kara for the goodies for Tuli. You guys are awesome!

Love,

Janelle & the Kinikini Krew

Wednesday, October 19, 2005 3:43 PM MT

Last week was a great week for us. On Thursday, we drove down to Lake Powell in Southern Utah and went on my parent's houseboat for a few days. It was a nice relaxing getaway. The kids just swam all day, and rode in the tube behind the speed boat. It wasn't too hot, in the 70's. We got back on Sunday night.

I am feeling better. I just had a mental low for awhile there. Basically I've gotten back to my "Whatever will be, will be." Ben was diagnosed with Diabetes II last week. That has been not just a bump in the road, but a big mountain in the road, and is the start of a big lifestyle change for us.

Tuli is scheduled for surgery on Monday for his arm. I'm hoping all goes well, and that he isn't too sore and sick for Halloween. I told Lia the other day that Tuli was probably going to be in the hospital for her birthday, and she cried. It's not fair, but I don't know when else to do it. It has to be done soon. I just can't put it off anymore.

Hope everything is well with each one of you!

Love,

Janelle & the Kinikini Krew

Friday, October 7, 2005 6:15 PM MT

I just want to thank everyone for the outpouring of love that you have all given me with your messages and your words of encouragement in the guestbook. I just sat here and read them and cried. I think for awhile that I thought that not very many people came on Tuli's website. Which, really was OK, because it's very therapeutic and I still use it as a journal and a record of what is happening with his illness. But, it sure does feel good to know that so many people care about what is going on with us/him. Thank you so much for your love and support.

I still am struggling with things. I'm trying to just have a happy outlook, but it's hard to keep the "spirit" when so many things drag you down.

I forgot to tell all of you that Tuli turned a proud 9 years old on Monday. I can't believe it has been just over 1 1/2 years since he was diagnosed. Boy, has our life changed. That day I took some candy suckers in the morning and dropped them off at his classroom so he could share them with his friends. In the afternoon Grandma & Grandpa Kohler (my mom and dad) came by and gave him a game for the PS2. Tuli was at Boy Scouts and was so sad to have missed them. The best I could do was bake him a homemade cake, and take it down to Grandma Kinikini's house and share it with the family. I felt so bad, because I didn't even have the money to buy him the video game that he wanted for his birthday, or give him a birthday party. His Siblings, Cousins, Aunts, Uncles, and Grandma Kinikini all sang to him and wished him Happy Birthday. His best friend and cousin Tuli Sela gave Tuli his two most prized possessions: a petrified rock (tee hee) and a tiki pig (another tee hee) that Grandma had brought from Tonga. His Aunt Priscilla gave him twenty dollars, and everyone gave him lots of hugs and kisses. After we left, we came home and I was feeling terrible, because I hadn't been able to buy his gift, and I felt so bad for him. To me, it wasn't really that great of a day. I wanted to do so much more for him. I felt like he deserved so much more. As I was putting him to bed, he said, "This was the best day I've ever had.", and he started to cry. The love of his family, and being with them was greater to him than any party he could have had. Gosh, I can't tell you how much I love this kid. He's such a handfull, that sometimes you forget what a big heart he has. He is so accepting of his lot in life, and doesn't question why he doesn't have more, or why things are different. He's such a great example to me.

Well, tonight we're trying to have some semblence of a birthday party. Tuli Sela is sleeping over and they're in there playing video games. I think I might send them to a dollar movie.

Thanks for stopping by, and again thanks for all of your kind words.

Love,

Janelle & the Kinikini Krew

PS - MRS PAM, MY FAVORITE JOSH GROBAN IS "FLY ME UP TO WHERE YOU ARE" (I think that's the name of it.). Also, there is a great one called "The Prayer" with Josh Groban and Charlotte Church. Good stuff!

Thursday, October 6, 2005 9:03 AM MT

Didn't mean to leave all you hanging with that last entry. But, the truth is, we won't know anything else about it for another 5 weeks or so until he gets scanned again. In 2 1/2 weeks we are going to be having surgery on Tuli's arm again. I pray and hope this will be the last one. What was supposed to be this great thing where he would only have to have one surgery in his life, he's having multiple and it's frustrating.

On another note, I feel terrible this morning. I'm in kind of a depression. There's several things involved in this, one of the main ones being that I'm tired. But, I let someone down too, and that has made me sad, especially this morning. You know that feeling you get when you know you let someone down? Yeah.

I think it's that, and all the stress of everything going on in my own life and not knowing what is going to happen with everything. Not just Tuli's cancer, but other things, too. I feel like things are so out of control now, and I'm trying to trust in my Heavenly Father, but every once in awhile I just feel down. There are just things beyond my control. I feel like I'm subject to what other people want to do, and it's frustrating. I think that I've been trying to be an example to everyone, and I think that I put a lot inside me to "protect" other people. And, I think that it's wearing on me a little. I'm trying to be forgiving. I'm trying to just take it a swallow it and not have feeling of anger and resentment. I'm trying.

Well, our prophet Gordon B. Hinckley challenged each member of the church to read the Book of Mormon by the end of the year, even if you had read it before. I figured I just didn't have time to do that. But, a few weeks ago, I picked it up and didn't stop reading until I was done. I read it in two weeks. I was so proud of myself that first of all I did something the prophet told us to, and secondly about how I felt during that time. I just need to get back to reading it daily. It truly gives you a feeling of peace in your life. If you have never read this book, I recommend it highly. Even if you don't "believe", this book will testify of Christ, just like the bible. I believe it with all my heart, and hope that I can be a better person because of it. Time to let go, do what is right, and trust in Christ.

Thanks for reading about the evolution of an imperfect person. That's what this life is all about, right? To teach us to be better. My mom always said...."life is like a box....", no wait that's Forest Gump. She always said, "You'll keep going through the same trials until you learn what you have to learn." I hope I learn my lesson soon!

Love you all,

Janelle & the Kinikini Krew

Thursday, September 29, 2005 3:15 PM MT

Well, I don't really know how to say this, but....Tuli got his scans today, and....my husband asked them about the lymph nodes in his arm, and apparently, that wasn't what they were looking at at all. Apparently, they were watching a spot in his right lung. I think I just had my bubble burst. I don't really know what to do now. I guess the "good" news is that in 6 weeks there was no change to the size of the spot.

Well, that's all I can really say right now. I just wanted to let you know. I can't really think or talk about it right now. Our next scans are going to be in 6 weeks again. Please pray for my Tuli.

Thanks,

Janelle & the Kinikini Krew

Wednesday, September 21, 2005 8:38 AM MT

For those of you who looked and saw that the time for my journal entry was 8:30 in the morning, this is not a typo. I am really awake! If you know me well enough, you know that I'm rarely coherent before noon. But, I have to get kiddies ready for school, and that means getting out of bed. Don't worry, I'll be back in bed shortly.

Tuli's surgery is now scheduled for October 24. I wasn't able to get time off work for another month, and we're going to Lake Powell on the weekend of the 14-15 of October, and so I wanted to do it after that. This was the first available day for the doc. We got pre-auth, so that's not a problem anymore.

Tuli also has a CT scan planned for Sept. 29. This was a follow-up for those lymph nodes in his underarm. Please give us your hope and prayers that all will be well with that scan.

You can see that the time between journal entries is sometimes quite long. Such is life when you are busy taking care of 5 kids and working 25 hours a week. The J-O-B is alright. I've gotten used to it. It's just extremely boring, because it's the same thing over and over again. It seems like sometimes I just don't have a lot of time, or when I do have free time, I just want to relax.

Mrs. Pam, sorry we missed you the other night. You're a great lady to fly over for Devin.

Later,

Janelle & the Kinikini Krew

Monday, September 12, 2005 9:48 AM MT

Due to the fact that we had problems with our insurance, Tuli is not going in for surgery today. I think we are going to have to delay the surgery until October. I can't get off again this month and then the 3rd of Oct is his birthday and the week after that we are going out of town. So, it looks like it might be the 17th of Oct. I have mixed feelings about this one. In a way, I'm relieved because I feel like we've been given more time to just enjoy life, but I also know that it has to happen sometime, and I want to get it over with. I got all geared up to take him to the hospital this morning and as packing, and then got a call from his orthopaedic and they hadn't gotten pre-auth. In this whole thing, I had forgotten to call them. I had been talking with the hospital, and I thought they were in communicado with Dr. Scott, but apparently that wasn't true. So, his ortho didn't even know he had changed insurance. That was my fault, but sheesh, the girl from his Doc's office was rude. Some people. I'm finding that in life there really is no reason to be rude about anything. It's not like I did it on purpose.

Anyway, such is life. Surgery is delayed and I have the week off for no reason. I think that I will paint my house. It is getting cold outside and it's now or never before it snows.

See you all later,

Love,

Janelle & the Kinikini Krew

Saturday, September 10, 2005 9:16 PM MT

Tuli's baptism was a wonderful night. There was such a great spirit there. Tuli was so excited to finally be baptized. My mom sang and that made me cry, but after that I just had this peace. I couldn't cry after that. For some reason I felt like I should be sobbing the whole time, but I think I was more happy than sad. Someone after asked me "Where are the tears?" I said "I've cried enough." It's weird, but sometimes I just go for the longest time without shedding a tear, and then all the sudden I'll break down, but it will only be for a few seconds, and then I'm fine again. It just takes a lot to make me cry anymore. After the baptism we had a light dinner with the family. It was a good day. Tuli was so happy. I had made Tuli a white sling to wear during his baptism, and my friend Tiffany embroidered his name and the date on it so that he can keep it always and remember. We also showed a slideshow that Ben and I put together of Tuli. A lot of the pictures were of his illness. Gosh, I can't believe how bad he looked. Especially towards the end. My dad sat next to me and sobbed the whole time.

Well, Tuli is supposed to get surgery on Monday. This is nerve racking enough, but we're also having problems with our insurance. Our previous insurance lapsed (it was our own fault, but that's another story). So, we picked up another insurance. What I thought was going to actually be a better insurance. When I called them on Thursday about another matter, they said that we still weren't in their system. We had been covered by this insurance since the 3rd of Sept. Apparently, the hospital had also called to pre-authorize Tuli for his surgery, about 4 times, and they just kept saying that he wasn't in the system, and that they were working on it. They kept saying "We need you to fax this, and that, and there might be a pre-existing condition. Oh, but actually there's not any pre-existing conditions because you had insurance before" (what a roller coaster). After half the day on the phone on Thursday and another hour on Friday, on Fri afternoon at 4:00 they still didn't have him in the system and we still didn't have pre-authorization for Monday. I just don't know what we're going to do. The hospital hasn't called with his surgery time, so I guess they're not expecting him. But, the lady in the pre-insurance department said that she had talked with her supervisor and they said to go ahead and do it, because they have all this documentation that they have done their part and that the insurance is lacking. I just don't want to have this huge bill to deal with. It's really upsetting, because I have taken next week off to be with him, and I can't take any more days for the rest of the month, so if we don't do it Monday, we're looking at postponing until the middle of October. Ahhhh, what to do? I just don't know. Everyone is closed down until Monday morning, so I can't even call people to try and resolve it.

Anyway, we'll see on Monday what happens. I guess it's not a life or death situation, but I have been waiting a month and a half for this surgery and shouldn't have to postpone it because the insurance is inept. That's their problem, not mine. Insurance is so nit picky about dates, but only for other people, not for themselves. Funny how that works.

Well, wish me luck.

One good note. They changed the bus stop back to the original place, and it even comes a little later, so my kids get to sleep in a few extra minutes. Nice!!!

Later,

Janelle & the Kinikini Krew

Thursday, September 8, 2005 7:04 AM MT

Well, we survived our road trip to California. We really had a good time. We went to 3 parks. Legoland, Knotts Berry, & Six Flags. Legoland was the first day, and JJ and Arla loved it. It has so many kiddie rides, but we all had fun. Especially looking at the miniland with all the lego buildings and stuff. The second day, we went to Knott's Berry and they were awesome. They gave Tuli a VIP pass, and he went to the front of the line on everything. I just thought that was an awesome thing to do, considering that he already had his Make A Wish. They treated it like another Make A Wish for him. On Sunday we went to Six Flags, and left after 4 hours. I have finally gotten smart about Tuli and requested disability assistance so that he didn't have to wait in those long lines, because he really is physically not able to. Well, they gave me this "pass" and basically we had to hike up the exit ramps and show this pass and then they would give us a time to come back, usually about 2 hours later. Then we would have to hike all the way back down the ramp and come back 2 hours later and hike all the way back up. Their disability policy really upset me. I can't believe they require that of the disabled. The whole point of disabled assistance is to make it easier for a disabled person to have access, not make it harder. Very disappointing. So after 4 hours, we left because Tuli was crying so hard. It was very difficult for him. He just doesn't have the physicaly capacity anymore for that kind of stuff. Very unfair. I think I'm going to send a letter to their corporate.

Anyway, we even fit an hour in at the beach. I'm still getting sand out of our clothing. JJ was much better than I thought he would be, and I'm even thinking that we will take him to Lake Powell with us in October. I was thinking before that we would leave him, but he had so much fun on this trip. Watching him and Arla ride those kiddie rides was the best. We'll be posting lots of pictures later!

Tomorrow is Tuli's baptism. I went up to my mom's house yesterday and made a white sling for him to wear. I'm so excited for him. This is a day we've been waiting for, and weren't sure we would have sometimes. It's going to be a great day of celebration.

On Monday Tuli goes in for what I hope will be his last surgery. This time they're probably going to have to cut him in 3 places. His pelvis to take bone out for the graph, his arm, and his leg to fix that broken screw. Ahhhh, I'm so sick of surgeries. I am so angry right now that they have to cut his little boy again. How many scars is he supposed to have?

Anyway, hope all is well with all of you. Pray for Tuli this weekend, that everything goes well on Monday and they don't have to do too much cutting.

Thanks,

Janelle & the Kinikini Krew

Sunday, August 28, 2005 9:02 PM MT

Hello! Tuli is doing well. On Thursday, they had a field trip at school. They decided to walk about 4 or 5 blocks to the park and spend some time there and walk back. He had a great time, but the day after he woke up and couldn't even walk. Remember how I said he had been complaining of some pain off and on in his right heel? Well, since he couldn't even walk across the street to the bus stop, I had him stay home from school and made a doctor's appointment. We went to our pediatrician, and took an x-ray and well....how do I say this? It's not cancerous (thank heavens), but apparently when they took that bone out of his leg, they had to put a screw in his leg to keep the bone stable. Well, he has broken that screw in half. You look at the x-ray and it's just this screw that is sheered in half. I tell you, this boy and screws don't mix. I just had to laugh, but now I'm not too excited, because I'm thinking we're going to have to cut into there, too to fix that situation. This is becoming very frustrating.

Just a little side note, too. Lani fell off the monkey bars on the first day of school, and hurt her wrist. They couldn't tell if it was broken, so they put a splint on it, and we're supposed to go in next week before our trip to see if there is any new bone growth showing a break that is healing. With children, the bones are soft, and hide breaks well, so we don't know if it's broken or not until next week, but it hurts her, so I think it's broken or something.

Oh, and what else? We went swimming 3 times last week. 2 times to Raging Waters and once to the Kamas Req for my sister Alicia's birthday. We had a fun, eventful week with school starting and everything.

One more note, they tore down my kid's school to build a new one. Meanwhile, they accomodated them at a school farther away for the school year. This means they have to be bussed. We had a nice stop right across the street, and after two days they decided that their bus was too full and moved the bus stop a block away. This doesn't sound like a big deal, but is down a hill, a hill that Tuli is going to have to hike up for the rest of the school year after his surgery to remove bone from his pelvis. I think not. I think that the bus people are going to have a problem with me. What do you think?

Anyway, I'll let you know how that goes.

Talk to you later,

Janelle

Sunday, August 21, 2005 6:29 PM MT

Hello everyone!

Lagoon was a blast, but we didn't get any pics. I forgot the camera. That's OK, we'll get lot of pictures in Cali. Only 2 weeks away for that! I'm excited!

Well, boys and girls. It looks like baptism on the 9th of
September. I want to invite everyone within driving distance to come. You're all welcome, and we'd love to see you! We're all planning on some kind of potluck or something that evening, too. So, come eat up!

Scans went well. Of course they had to find something questionable. They found that his lymph nodes in his right armpit were a little large. So, we have to go back in 6 weeks and get it scanned again to make sure there's no change. I have resigned myself to the fact that they're always going to find something. It's their way of making sure that he stays well. I had my fav Oncology doc in that day. He is very friendly, and was just so excited about how well Tuli looked and everything. He said it just made it all worth it (for him). I thought that was nice of him to say. It was worth if for me, too, when I look at Tuli. I wish I didn't have to do all the stuff we did, but it that's what I had to do to have him, it really wasn't hard.

My kiddos start school on Wednesday. It will be nice to have some peace and quiet around here for a few hours a day.

See ya later,

Janelle & the Kinikini Krew

PS - Did I tell you? Ms. Pam is coming to town!!

Tuesday, August 16, 2005 1:18 PM MT

Well, we tried to get Tuli's baptism scheduled for this Friday, but it didn't work out. So we're looking at Sept 9th. Hopefully it will take place then. It's the very last day we can do it before his surgery and his 9th birthday, at which point in the church records he would be listed as a "convert". For those who are not in the LDS lingo, this just means that he wouldn't be listed as born in the church, but that he is not a member and is converted into the church. All very confusing, I'm sure, and not the end of the world if it happens, but I would just rather get him done before he turns 9. Records are very important in our religion. I would hate for every geneologist in our family to have to figure out why he was listed as a convert.

Anyway, I could spend all day explaining that one, but sufficient to say, there is not reason to delay his baptism anymore, in fact we need to do it soon before surgery.

Tomorrow we are going to Lagoon. It should be a fun day. I will take pictures and post them. Roller coasters, merry-go-rounds, all that good stuff.

I spent all day Saturday scraping the outside of my house trying to get it ready to paint. My goal is to have the outside of my house done by winter. No small task. Ben and I both hate yardwork, and my house shows it. The weeds in our yard flourish more than anything else, the grass is dead, and it's overall an eyesore. We decided to put the neighbors out of their misery and actually do something with it this summer. More than one jaw dropped to see me working outside as people walked and drove by on Saturday. The last few days, it has rained, so I haven't done much else on it. Time to get back on the wagon.

Thursday Tuli has scans. I'm not too worried. Although, he did regal me with this story of his foot yesterday, about how it hurts sometimes and how it doesn't hurt for periods of time, and then it will all the sudden hurt again. There was a niggling in the back of my brain thinking "Don't tell me there's something there", but then I kept saying "You're overracting, it's nothing". We'll see if anything shows up. Pray that it doesn't, or pray that it does it there is something there so we can take care of it. I don't know what to pray for sometimes. Only our Heavenly Father knows what's going on. Just pray that everything will happen as it should.

Well, thanks for stopping by to check on us. We are doing well, and just planning regular normal life. Well, except for that tiny little detail called a surgery next month.

Later!

Love,

Janelle & the Kinikini Krew

Tuesday, August 9, 2005 9:22 PM MT

Well, I'm excited for this month. We have our complimentary tickets to Lagoon on the 17th, and Raging Waters on the 22nd. We're getting our trip to Cali planned, and it is making me excited to hit the road and do it. We have decided to drive, because I don't think we'll be able to get on standby with JetBlue. It's a busy weekend, and there is only one flight a day between SLC & Long Beach and I don't want to get stuck somewhere or not be able to get out when we want to. So, we are going to rent a van and go that way. Drive all night long. Should be a load of fun!

Well, everything is good here. My mom came down tonight to my enrichment night for church. It was good to see her, and spend some time with her.

Love all of you.

Thanks for stopping!

Love,

Janelle & the Kinikini Krew

Tuesday, August 2, 2005 1:35 PM MT

Bad news! I took Tuli to the Doctor this morning because of that bone that I thought I saw move and the Orthopedic said that he thinks the bone is actually getting father apart. It looks like that bone graph is just not going to take. I'm really disappointed, but in a way I don't really dwell on it. I'm glad we're going to do something now, rather than wait another 7 months and have to do it then. I'm ready to do the next thing that we have to do to get his arm working again.

Yesterday we had a fun day. We went to the Salt Lake City Zoo with the Candlelighters. We had a good time seeing all the animals and playing on their playground. By 3:00, I was exhausted and the kids wanted to wet their feet in the little pool/fountain. Wouldn't you know it, by the time they were done they were all soaking wet. You should've seen some of the looks we got from people. Some people are so uptight and snobby. Parents thought we were crazy, and their children stared in envy. I figure if it's not hurting anyone, who cares.

Well, surgery is set for September 12, after our plans we have this month and our trip the first week of Sept. We are going to baptize Tuli this month before his surgery. He has an appointment with the Bishop on Sunday to get his interview and the Bishop said that we can do it by special appointment during a weekday, most likely in the evening. It's going to be a fun month in August. Besides Tuli's Baptism, we have the Kinikini Reunion this weekend, Camping with Ben's Mom, Swimming parties, Lagoon amusement park, and Raging Waters all planned for the next few weeks, followed up by our trip the first week of Sept. We're making up for the summer that we missed last year.

See you later!

Love,

Janelle & the Kinikini Krew

Sunday, July 31, 2005 6:07 PM MT

Hello!!!! I've missed you too!! It just seems like the summer is whizing by. I told someone the other day that since Tuli is better, I keep thinking that I can do everything. I just say to myself "Well, Tuli doesn't have chemo or anything, so I have all the time in the world." Really, what takes most of my time is just my job and keeping up with the kids and the house. It sure is nice to be able to try and keep up though, rather than come home to mounds of laundry, only to have to go up to the hospital again. It's nice to have some "normalcy".

Tuli is doing well. He is just all over the place. The other night when we were doing his bone stimulator, he lifted his arm 1/2 an inch and I could have sworn that the bone popped out on his arm. But, I'm completely paranoid anyway. I keep just thinking that arm is moving and I think I dream at night about it. I made an appointment with the Dr. for Tuesday to see what's going on. I just feel like it's not going to heal. There has been no change to the bone for weeks and weeks and I'm just feeling like we're not getting anywhere. It's frustrating, because I feel like we're doing all of this for nothing. I feel like in the end we're still going to have to do surgery again and we're just dragging out the inevitable. It's so frustrating.

Anyway, we're planning a little trip for Labor Day. We want to fly on JetBlue and then go to a bunch of the parks that Tuli got free passes to through his MAW trip. So, basically we just have to pick up the cost for our hotel (which we have a great deal through my bro-in-law) and our rental car (anybody have a connection?). So, it shouldn't be that expensive. I'm so excited for the trip. We're planning on Legoland and Knott's Berry Farm and the beach for sure. I'm excited!!

Well, hope all is well with everyone! Talk to you later!

Love,

Janelle & the Kinikini Krew (gotcha)

Tuesday, July 26, 2005 12:05 PM MT

Hey everybody! Sorry it took so long for me to update. Been a little busy this week. I did a Luau for Joel and the Search and Rescue of Wasatch County. It turned out great (thanks to my mom and my cousin Nanette, and my friend Valene who came a cut all the fruit and generally helped out with everything). It turned out even better than I had hoped, thanks to proper planning. I had thought about it for weeks. Anyway, I was pretty proud of myself. But, I still couldn't have done it without my mommmy. Moms are just always there when you need them.

Sunday (pioneer day in Utah) was my birthday. I turned a young 31. We spent the day going to church and hanging out at my in-laws. We ate some of the left over food from the Luau, and it was a good day. On Monday, we celebrated Pioneer Day. This is a huge holiday in Utah. Probably as big or bigger than the 4th of July. It was the day that the Pioneers first came in to the Salt Lake Valley, and Brigham Young said "This is the place." My girls went with their Aunt Sela and hung out at the park, and we took the 2 Tuli's (My Tuli and his cousin Tuli) and baby J to eat and then went bowling. We had a great time. The two Tulis are two of a kind and love to hang out with each other. They're hilarious. Later that evening we walked down to the park from Grandma's house and watched the fireworks. It was a fun time. We got home late last night.

I think today we're going to spend the day cleaning up the house. I still have a bunch of coolers from the Luau that need cleaned. Sounds like lots of fun, huh?

In the midst of all this business, I took Tuli to his orthopedic appointment on Thursday. Everything looks the same. No better or worse. I really wish this bone would grow in. But, the good news, is Dr. Scott cleared Tuli to go to the amusement park, as long as he doesn't ride anything that puts him upside down. He wasn't too happy about not being able to go upside down, but wasn't too mad about it. I think that he was happy that he would be able to go at all and have some fun. Dr. Scott also cleared him to go to the water slides, but he can't go on the long ones that throw him in to the water. Not this year. I will be happy when this kid can just be a kid. But, we are thankful for what we've got.

Thanks for stopping by and checking on Tuli.

Love,

Janelle & the Kinikini Klan

Thursday, July 14, 2005 2:43 PM MT

Well, today was Ben's day off, so we went out to lunch as a family. It was nice to eat out. We haven't done that for a few months. After we had ate, and when we were leaving, this old couple said to Tuli "What did you do to your arm?" Tuli said "I broke it."

I have actually told him to give that explanation, because people would ask him that question and he just didn't know how to answer it. Most of the time, he would just say "I don't know." I think he would say that for several different reasons: One, I don't think he wanted people to think he was "different" or feel sorry for him. Two, he didn't "Do" anything to it. And three, how do sum it up in a one sentence expanation? So, this is the alternative I told him to use, and it seems it's the one he likes. It actually made me happy, because it is true. He did break it. He doesn't really have cancer anymore. When he has a runny nose, he doesn't have to tell people that he had cancer when he was seven. Maybe this is a whacked view, but I am extremely proud of my son. Not only did he take a terrible disease, that could have taken his life, and face it with more poise and maturity than most adults, but he doesn't want any pity or sympathy for it either. You know, Tuli is a handfull. I know that there are even members of my family who just about go crazy when he's around. But, you know what? I used to get a little embarrassed about it, because sometimes he was so out of control. I know I'm not a perfect mother either, and I don't always have the best handle on him, but I think for the most part I do the best I can. He has always been from the time he was a baby less than mellow. I was scared to death to send him to school, because I didn't know how he would behave, and I had several family members tell me that he was ADD or ADHD. I used to think he had hyperactive disorder. But, you know what? I do not apologize for it anymore!! Ben and I were talking about it the other night and when Tuli is happy and even when he is being naughty sometimes I AM GRATEFUL!! I saw what chemo did to his personality. I saw a change that shouldn't have happened, and it made me sad to see it. It makes me happy to see his real personality, even when it's CRAZY!!

Well, that's all for now. Hope all of you are doing well!

Love,

Janelle & the Kinikini Klan<

Wednesday, July 13, 2005 8:20 PM MT

Ahhhhhhh! The song is killing me. It was OK at first, but when you have heard this song (the one on this website) over and over it is just too much. Too sappy for my tastes right now. It's starting to annoy me.

Well, I have been JetBlue-ing like a dog and I'm just about jetblue-d out. I've been working some extra hours and I have had it. I was hoping that by now I would really like my job, but I'm just tolerating it. I guess that's what most people do anyway. It just makes me sad, because I left a job that I really liked.

So anyway, I called the Hem/Onc clinic the other day, and I asked when Tuli's next scans are going to be scheduled (it's been over 3 months). The person I talked to said that he would look into it and call me back. That was two days ago. I called again today and talked to another person and left my cell phone, and it didn't ring all day. Sometimes I wonder if they really care. It's kind of frustrating. I guess his scans aren't high on their priority list.

Well, we'll see what's going on with his scans sometime. See ya'll later.

Janelle

Sunday, July 10, 2005 6:18 PM MT

Hi everyone! For the most part the doc appointment went well, and the good news is there was no change. Tuli being out of his cast didn't cause any breakage in the arm. The next step is to just keep him out of trouble and wait and see if the arm will heal. Dr. Scott did say that if the arm doesn't heal, we will have to do surgery again. I am so not looking forward to that. I really do hope that it does heal. I don't want to put this kid through another surgery again.

Well, so kind of good and bad news. Not as good as I've been hoping. I'm still praying for a miracle, but I guess my miracle has already happened. My son is still here, and I am so grateful for that, that I am really no begruding God on having all these problems with his arm. I've learned that it's life. It's a part of our time here on earth. I just accept and move on, and most of the time (I try) to be grateful for what I have.

Well, hope all of you have a great week!

Janelle & the Kinikini Klan

Wednesday, July 6, 2005 9:29 PM MT

Well, tomorrow we get to go to the doc and see if Tuli did any damage to his arm this week. Overall (besides the motorbike incident) I've been pretty proud of him. He still just has a really hard time keeping it still all the time, but for the most part no crazy stuff.

Today Tuli went to the Hyundai Hope on Wheels at Primary Children's. They asked him to come put his handprint on a car that is going on tour. Check out the pics in the photo gallery.

Later,

Janelle & the Kinikini Klan

Tuesday, July 5, 2005 1:06 PM MT

How was everyone's 4th of July weekend? We had a wonderful weekend, starting with our Kohler Family Reunion. We had a pretty good turnout with 54 people. We had a lot of fun camping out at our Uncle Norm's house and just hanging out with people that we hadn't spent time with in years. It was a wonderful experience.

We came home on Saturday night and on Sunday afternoon we were down at Grandma Kinikini's spending time. I was in the kitchen cooking and went in the livingroom where I was visiting with Ben and his mom, and pretty soon this police car rolls up. Ben went out to see what was wrong, and the policeman said that Tuli was out on the little motorbike (The one that I have told him about 30 times since Thursday that he absolutely cannot ride with the cast off, and the same one that I had reminded him an just an hour earlier that he could not ride.). Not only was he out on the motorbike, but he figured that he would give JJ a ride as well. So, they're going up and down the side of the street and somebody called the police. I'm really glad that someone saw them, but I really cannot stand holier than now policeman either. The guy was a total jerk. He took my husband's name and went and ran a check on him in the car like he was going to find something. If any of you have seen how brown people are treated by the "public servants" you would be appauled. I sometimes wonder if things would be handled differently if they were white. Then, I come out and I'm the white trash because I'm married to a brown guy. Well, in his opinion, he saw they were minorities and he had already decided that my husband must have a record, and that we were terrible parents. I had to take the boys and go inside before I really got into it with him, because I was arguing with him. Apparently, he felt like he had to have an explanation and wanted to know what we had been doing, and needed to tell us what terrible parents we were and how to parent. You know, it was one of those things. We had sent the kids out to play for a few minutes and thought they were just out there playing ball. Please, you cannot tell me that if you have children you have never let them go outside and play on Sunday afternoon while you're cooking dinner. And, the problem was, Tuli was doing it in secret because he knew that I had told him he couldn't ride it. So, it's not like he was doing it right in front of the house.

Don't get me wrong. I'm glad someone caught them before they got hurt. But this world that we live in really upsets me. If they cared about the kids getting hurt, why wouldn't they come to the door and say "Did you know that your kids are out here riding this bike with the baby on it?" No, they call police because they want someone to get in trouble. I'm a good parent. Sometimes kids get away from you and do something stupid behind your back, like climb things they're not supposed to, break the neighbor's window, sneak off to the candy store, and even ride a bike they're not supposed to. So, yeah. Go write a report so that social services can come take my kids away and give them to some Foster Parents that can molest them. Oooh, I hate government.

Ok, so now half of you think I'm a bad parent, and half of you are thinking it's OK. So, I don't know how you feel either way about it. It's something that happened. I should've been watching them better. Especially the baby. But, I just about strangled Tuli. If he had minded me (something I told him just an hour before) the whole incident never would've happened. Sometimes that kid.

Anyway, it happened. Can't change it now, just learn from it (or kill Tuli). No, you all know that I don't really mean that. But, this kid is a handful. Most of you didn't know him before his cancer diagnosis, and don't know what a crazy man he can be. But, you're sure learning, aren't you?

4th of July was great. We spent the day BBQing with Ben's family celebrating Ana's birthday and Le'o's "Hope of America" award. Later, we went up to Sugarhouse Park and watched the fireworks. We had a fun time.

Well, it was a pretty eventful weekend. I'll be glad to have a few quiet days. Thanks for stopping by.

Love,

Janelle & the Kinikini Klan

Thursday, June 30, 2005 3:30 PM MT

The news on the arm is ok, but not fabulous. It hasn't moved anymore, so it is still healing, but it's almost as if the healing slowed down a little bit. Still, Dr. Scott decided to take the cast off and give his skin a little break. For a week he is going to be in a brace with a sling and he is supposed to seriously chill out. No riding bikes, no running, no climbing trees. I think that Dr. Scott doesn't know this kid very well. I have lectured him about 20 times already on what he can and cannot do while his cast is off. He said "Well, what if I do it and you don't know." I could kill this kid sometimes. I have to keep pounding it into his head that it's the bike or his arm. I just hope he gets it and doesn't give me a heart attack this week.

Well, tomorrow we are headed up to Midway for the Kohler family reunion. I am supposed to be in charge, but I don't know. It should be interesting. I delegated most of what is supposed to happen, so it shouldn't be too stressful. I just have a slide show that I have to finish today and I have to pack. We are camping out at Uncle Norm's house.

Well, hope all of you have a great 4th of July. I have to weekend off, so I am really excited!!

Later,

Janelle

Monday, June 20, 2005 1:24 PM MT

Friday night Relay for Life was good. Tuli is very proud of his medal. He has been showing it to everyone. I told him he was a hero for a lot of people, and he couldn't understand why.

Tuli did well on his speech. He wrote it all by himself and he talked about how we went down to the fountain at the hospital and snitched quarters out of it to by a candy bar. Those were the good memories. He thanked everyone for helping him and talked about the nurses and Steve and how they used to come on and make jokes and try to cheer him up.

I feel kind of bad for Tuli because I can see that the cast is really wearing on him sometimes. He sweats like crazy since summer started and it just looks like a little torture chamber. We go in to the doctor this week to see how everything is coming and then maybe we'll know then how much long he is going to have to wear it. We still haven't gotten him baptised because of this whole cast and arm thing. I would like to do that soon.

Well, thanks for stopping by. Hope all of you had a wonderful Father's Day.

Thanks,

Janelle & the Kinikini Klan

Friday, June 17, 2005 11:05 AM MT

Hey everyone!

Things are going good here. There's really nothing to report, except that I noticed it had been a week since I updated. Tonight we are going to our first Relay for Life. Tuli has been asked to say a few words, and last night he sat down and wrote his speech. I read it. It was very good. I'm excited for him. We are looking forward to going tonight to to see the Ross family.

I'll update later and let me know what happened.

Love,

Janelle & the Kinikini Klan

Monday, June 13, 2005 1:36 PM MT

Well, we picked up the kids from camp on Friday all in one piece. It took a few days for them to recouperate. They were pretty tired. They all said that they had a wonderful time. That was pretty apparent when Lia and Tuli sat and cried when we came and picked them up and they had to say goodbye to all of the friends they had made. I'm glad they had such a good time they didn't want to leave.
What a wonderful place Camp Hobe is. It's a little piece of heaven in a cancer world that doesn't always make sense. Tuli's cast was an even darker shade of black, if that is possible.

Well, hope all is well with each and every one of you. I am finally working at home, but it is still work. When I'm on the phones I have to shut myself in a room and not let the kids in, but it is nice to be able to go and see them on my breaks. I even took one of my 15 min breaks last night to bathe the baby. It's cool.

Well, it's a super busy next couple of months. I have taken on organizing the Kohler family reunion and I have a few Luaus to arrange for family members, so it's going to be crazy.

Have a great week!

Love,

Janelle & the Kinikini Klan

Wednesday, June 8, 2005 12:57 PM MT

I dropped Lia, Tuli and Lani off at Camp Hobe on Monday. They were excited to attend Cancer Camp, and I had stayed up all night the previous night to pack them. I had to work my shift at JetBlue, then I camp home and got them all finished. I hadn't had time to pack them before because of my Grandma's funeral and all that had been going on. There just doesn't ever seem to be enough time.

Anyway, I think that right now they are having a fabulous time. Tuli was bunking right next to Devin and Lani was bunking right next to Kara. Alisa had requested them to be together, and I was glad. I think that will make it easier for them, especially Lani. This will be the first time that she will spend this much time away from home, and away from family. I'm kind of worried about her right now, and I miss them. It is very quiet here at the Kinikini house without Tuli tormenting someone. But, already the time is flying by. We already pick them up in two days.

Yesterday was Ben's day off, and we went to the park with JJ and Arla. It was a nice day and we had a great time.

Well, thanks for stopping to check on us.

Love,

Janelle & the Kinikini Klan

Tuesday, May 31, 2005 2:41 PM MT

Yesterday for Memorial Day, we went up to Midway to see my Grandmother. She was very sick and her liver was failing. They told her surgery would be very risky, and she decided against it. My mother called, and told us that she had passed away this morning around 8 a.m. My last living grandparent is gone now. I will miss her terribly, but I know that she is in heaven with Grandpa.

Here is a picture of my Grandma Lucile and My Dad Arlin.

Saturday, May 28, 2005 11:35 PM CDT

Tuli's appointment went well, and the bone is growing in!!! I'm very excited about that, but Tuli is not excited because it meant that he has to leave his cast on at least another 4 weeks and that means no Raging Waters and no swimming at Camp Hobe. That kind of stinks, but I'm sure there will be other kids who can't swim either with the picc lines and stuff. I'm so excited about the bone growth, though, and I think that the stimulator is helping even though they said it would take 6-8 weeks. Hallelujah! Maybe we can avoid any more surgeries this year.

Well, I just wanted everyone to know that Tuli is healing up. Thanks for stopping by and hope all of you are enjoying the start of summer!

Love,

Janelle & the Kinikini Klan

Monday, May 23, 2005 12:22 PM MT

Tuli slept over at his Grandma Kinikini's on friday night. When I came to pick him up on Saturday, he was slip and sliding in the back yard. For those of you who are not slip and slide savvy, it's a big piece of plastic with a hose running down it, and as the name assumes, you run and slide on it. Well, needless to say, the cast was sopping wet. I said "You know, if you can't get it wet in the bath tub, what made you think you could get it wet in the water hose?" I think that if this boy doesn't kill me, it will be a miracle. It was funny though, and I laughed at him the rest of the day, because his shirt wouldn't stay dry because the cast kept leaking water. In the evening when we went home, it was still a little damp, and he laid in bed and I blow dried his cast. Only Tuli. He's one of a kind. Never a dull moment.

On Thursday we have the awaited Orthopedic appointment. I'm not thinking that it will show if the stimulator is working, because they said that would be 6-8 weeks to show that. I am thinking that if we're not going to take it out of a cast, that we can at least put on a new cast. Now that this one has been wet, it is even a little soft around the chest, and Tuli keeps breaking it where the stick hooks in to the front and supports his arm. We have duct taped it about 10 times. With his shirt off, he is looking like a pear because he's putting on weight so fast and has a big spare tire and can't gain weight on the top because of the cast. It's quite funny.

Anyway, it's much better than chemo. Tuli asked me the other day when the cast is going to come off, and I said "Well, not sure, but even if you can't get it off this week, it's still better than chemo." And he had to agree.

Hope all is well with each and every one of you!

Love,

Janelle & the Kinikini Klan

Friday, May 20, 2005 8:36 PM CDT

Well, I survived JetBlue U and had my graduation today. Now I have 3 weeks in the call center, and then I get to come home and work from here! I'm very excited about that!

Things are still going well, and I'm excited that I get to slow down a little in the J-O-B department for the next few weeks. I might pick up extra hours here and there but not 40 hours a week. Ben and I are thinking we might start taking a few trips to New York and stuff too, since it's free to fly. No, I don't get discounts, and no I don't have buddy passes yet.

Tuli is still riding motor bikes and being crazy. He is excited to see if he can get his cast off soon. I hope so, but then again I don't want it off if it's not strong, but I feel so bad for him. He looks soooo uncomfortable.

Summer is almost here, and today was the hottest day yet this year. It doesn't look good. It looks like it's going to be a hot, hot summer. I'm not looking forward to that. A week from today Ben's sister is getting married, and the day after we are going to Raging Waters (water park) for a JetBlue company party. I think the kids will enjoy that, and I really hope that Tuli has his cast off. He's not going to be able to swim if he doesn't. I didn't even think about that until right now.

Well, talk to you later!

Love,

Janelle & the Kinikini Klan

Wednesday, May 18, 2005 1:40 PM CDT

Well, I haven't been in hybernation. I've been working full time and it's killing me. But, the good news, is after this week I will go to a 24hour a week schedule, and that will be much better.

This weekend was fun. On Saturday we had a wedding shower for Ben's sister Mea. We roasted 6 pigs and made a lot of Haka (side dishes like taro and sweet potatoes). We also had lamb, fish, and chicken. There was a lot of food and it was all gone by the end of the night.

On Sunday, we went up to Whiskey Springs by Heber and roasted marshmallows and hotdogs. We all had a nice time, I think. The kids did their usual arguing all the way there and all the way back. I never know if they're having a good time or not, but I had a great time.

Tuli is still in his cast and we're still doing the bone stimulator and we're still trying to get it to heal. On Saturday at the wedding shower, he came in and was covered in dirt. It just makes me laugh. I can't believe he just still keeps going with that cast on. Apparently he had been out riding a mini motorcycle and kept falling off. We did have a little talk on the way home about learning our limits. I sure hope he learns his, or he's going to break this arm again. I almost think that if it breaks again I'm going to tell them to put a metal rod in there. I know we were doing all of this to try and stay away from foreign bodies in his arm, and so we would not have to have multiple surgeries later on in life, but he needs an arm he can use, and if this arm is not going to work, then we might have to look at something else. I don't really know what to do. I am hoping that on the 26th at his ortho appointment that it will show that this bone is graphing in.

Well, I'm going to go. Lani passed her Kindergarten assessment and is going to 1st grade next year. She's very excited. She wrote me a note that I posted on my computer that says "Bot (but) the most inprtin (important) thing of ol (all) is I Love You." She's so cute.

Talk to you later,

Love,

Janelle & the Kinikini Klan

Tuesday, May 10, 2005 2:12 PM MT

Hope everyone had a great mother's day. I had a pretty good one. We spent the day at Grandma Kinikini's ward and house. We had a nice little dinner after church.

Ben and the kids bought me flowers and shoes, so what else could I ask for? I am feeling better slowly but surely. I am still training with jetBlue, and that has taken just about all of my time because I work 4p to midnight and then I come home and sleep late and by the time I get up I only have a few hours until I have to go to work again. Just another week and a half and I will be done and things can kind of get better. I will then go to a 24 hour a week schedule.

Tuli is doing well. Even with his cast on, he just looks so good to me. Sometimes I just catch myself crying for no reason just because I'm looking and him and I can't believe that he looks so good. I can't believe that he's so happy. When he smiles, my heart just wants to burst. I can remember a time when he wasn't so happy. On mother's day, all the kids got up and said a few words and Tuli said "Mom, I want to thank you for helping me with my chemo." Such simple words, but so much meaning for me.

I'm thanking my heavenly father for every single day!

Love,

Janelle & the Kinikini Klan

Saturday, May 7, 2005 1:37 PM MT

Hi everyone.

If you haven't heard from me for awhile, it's because my training is taking up basically my whole life. I work full time from 4p to 12a and then come home and sleep, get up get the kids ready for school, try to sleep some more, and then get up, get ready, and go to work again. I had forgotten how hard it was to work full time and be a mom. I haven't worked a 40 hour week in a few years and it's hard with how much I have to do here. Being sick didn't help either.

So, I am to Saturday, and my house is a catastrophy area. I'm going to have to spend the rest of the week trying to get things together. So, I have a lot to do, but just wanted everyone to know that we were still alive.

Talk to you later,

Janelle & the Kinikini Klan

Wednesday, May 4, 2005 2:15 PM MT

Well, I am feeling much, much better now. Thanks for all your comments in the guestbook. I have avoided all the foods that I used to love and have eaten strictly salads, yogurt, and fruit. I don't ever want to feel like that again. I think I'm going to lay off the red meat. The gall bladder diet says you should eat fresh fish and veggies and fruit. Yummy!! No sugar, no ice cream (my favorite food), no dairy, no red meat. Hmmmmm...that's what I used to live on. I'm seriously going to have to have a life change or I'm going to get these attacks more often, and I don't want that. We tried to lay off the sugar for awhile for Tuli's sake, and it just didn't last. It's very hard in this world of processed, preserved foods to get things in your body that are good for you. But, I will try (at least for awhile).

Today was a good day. We did a little polynesian number for a luncheon in our church. It was for all the 75 and older crowd. They really enjoyed it, especially the little girls doing the Hula. It was a lot of fun.

Training with jetBlue is going well. I will be excited when I can come home in June.

Thanks for stopping.

Love,

Janelle & the Kinikini Klan

Tuesday, May 3, 2005 2:07 PM MT

Well, it's been another eventful week at the Kinikini house. Thursday we went to the orthopedic doc and got the bone stimulator. I'm really excited about that. I hope that is going to work. We do the stimulation twice a day at home and it will take 6 to 8 weeks to see if it's working. We cut a 2x2 square in the cast right above the graph and put in a little button that you can open and close where the stimulator goes in. We also patched back up Tuli's cast. Now I call him a bionicle because if his extra cool cap that opens and closes. We also tease him about Quazimoto (it's all in good fun) and we laugh because with the cast it looks like he has a hump on his back.

On Friday I started jetBlue with my orientation. They provided lunch, and the food was great. That night we also went out and ate Chinese. At 4:30a I woke up feeling pretty lousy. I thought it was my acid-reflux disease flaring up. I sat up in the recliner and went to sleep and took some pepto and advil and about 11:30a it finally went away. For lunch we went down to Fat Cat's and the Candlelighter's Party. My stomach was hurting like I was hungry, and so I ate a lot of pizza. This was a big mistake. When I came home, my whole torso began to burn. My back hurt from the middle of my shoulder blades to the curve in my back. My whole abdomen was burning and my lower chest. I took pepto, rolaids, advil, anything I could think of, but nothing helped. Finally at 9:30p, I couldn't stand it anymore and I decided that I was going to go to the emergency room. I went with Mea (Ben's sister) and got there at 10:08p. We waited and waited, and finally got taken back close to midnight. I told them that my pain was about a 7 on the scale of 1 to 10. I don't think they believed me, because they didn't do a dang thing about it. It took forever. They gave my the maylox/lidocaine thing and I immediately threw it up. I threw up in the ER about 6 or 7 times through the night. They wanted to do a CT scan, and brought about 1/2 gallon of contrasting fluid and told me to drink it. I said "You're kidding right?" Finally at about 4:00a I started to tear up a little because I had tolerated the pain for so long, and I just couldn't deal with it anymore. It felt like it was getting worse. Finally they brought in a shot of morphine, and...whew! Finally no more pain. I never drank the contrasting fluid. When they took me down to CT, they just gave me a contrast injection. Funny how they didn't offer that to me before. The nurse actually had the gall to come in and say "You haven't drank any of the contrast". Well, duh! Since my son gets CT scans all the time, I had a feeling that they would just inject me with something. Oooh, healthcare is so frustrating. Don't they even care? They had me sit in that ER for 6 hours with no pain med and actually expected me to drink 1/2 gallon of nasty contrast. It's unbelievable to me with how much healthcare costs these days that we get such shoddy service. It's the only business that still survives even when it treats it's customers like crap. Really, I'm not just a drug addict that wants a high, I really need some pain meds because I'm in pain!!

So anyway, I finally got out of there at 5:30a. The CT scan showed that my gall bladder is inflamed. I lived on hydrocodon all day Sunday and felt like crap. I slept constantly. My husband and his brother gave me a blessing, and Monday morning Ben drove me up to Heber to see our holistic doc. He adjusted my back, and ran the electrode thing on me. Not surprisingly, it showed that my gall bladder was either infected or seriously bogged down with sludge. He gave me a few holistic medicines that he thought would help, and I started taking them. I decided to lay off the hydrocodon, because I had to start my jetBlue training at 4:00p. So, I went home and slept and when I woke up I felt a little better. Not much, but a little. I went to my training and talked with the instructor about maybe getting put in a later class down the road. I told her I would wait and see how I felt. I was taking the stuff that our holistic doc gave me. I was in pain still, so I took some advil instead of hydrocodon, and felt much better. By midnight when I got off last night I was feeling 80etter.

Well, thanks for joining me on my gall bladder trip (like you wanted to).

Love,

Janelle & the Kinikini Klan

Wednesday, April 27, 2005 12:41 PM CDT

This kid is crazy!!! Tuli broke his cast. Maybe it's all of that "head-standing" on the arm of his cast. He broke it where the supporting stick comes up right under the elbow. I called the Orthopedic doc and they said to duct tape it. How funny. They are going to look at it when we go in tomorrow for our bone stimulation. I am still really excited about the fact that we get to use the bone stimulator.

Well, not much else to report. We are doing well. Today is my last day at Quest Diagnostics and Friday I start at Jet Blue. I have an orientation on Friday and then 6 weeks of training in the office. Then, I get to come home and work from my house. I'm really excited about it.

Hope all of you are well! Thanks for stopping.

Love,

Janelle & the Kinikini Klan

Tuesday, April 26, 2005 1:48 PM MT

Good news! On Thursday we have an appointment to use the bone stimulator on Tuli's arm. I'm excited that the insurance is going to pay for it.

I have to run right now, but I will tell you all more about it later.

Thanks for stopping by.

Love,

Janelle & the Kinikini Klan

Thursday, April 21, 2005 12:27 PM MT

Just wanted to thank everyone that came and showed their support. Wow, to be honest I didn't know that so many people still checked up on Tuli now, and then and it really made my heart glad to know that so many people cared. Thanks to all of you. I can feel your relief along with mine and it brings tears to my eyes and happiness to my heart! Love ya,

Janelle & the Kinikini Klan

April 19, 2005

Whew!!! All of the Kinikini household just breathed a collective sigh of relief. I took Tuli to his orthopedic appointment and we x-rayed the left shoulder. There was nothing there. What happened, is on the bone scan, all of the growth plates light up. If there is an inconsistency from one side ot the body to the other (in other words if one side lights up brighter than the other side) they mark it as a possibly troubled area. Well, since Tuli has no growth plate in his right shoulder, obviously the left shoulder lit up brighter than the right and hence the inconsistency, or "extra" activity in his left shoulder. I'm sure that the doctors just wanted to be sure about what they were dealing with, but I didn't even need Dr. Scott to explain that to me. When he told me they were looking at inconsistencies in growth plates, I immediately said "So, there is no growth plate in his right shoulder, so that is what they were worried about." Bingo. Dr. Scott said "You're not even an oncologist and you could figure that one out." I bet you a hundred bucks that none of the oncologists in the hemo/onc clinic even remembered what kind of cancer Tuli had, let alone that he had a limb salvage surgery that took out his entire shoulder socket alone with the growth plate. Sheesh, do they read people's charts? When the Oncologist came in our room last Tues., I could tell that he didn't even recognize us, even though I have met him multiple times. It's so frustrating sometimes. But, I am relieved to say the least about our doctor appointment today. It was really starting to eat at me, and this morning my gut just kept clenching and I kept having a lot of anxiety when we were going in for the appointment. I am so relieved!!! Now I'll know that if they ever question the shoulders again that they need to look at the growth plates.

Anyway, now we can get back to normal again and not think about possibly starting up a chemo protocol or maybe looking at something alternative, or all of the penetrating, soul-searching questions that I thought I might be facing....again. We also talked to Dr. Scott about possibly trying a bone stimulator to see if we can get this bone to grow together. He said that was a great idea (much to my relief). I thought maybe he would think it was quirky and not beneficial and then I was going to have to argue with him and insist on doing it. We are going to see if the insurance will pay for it. I think that if they turn him down the first time, that I might call them and tell them that if they won't pay for the bone stimulator that we are looking at more and multiple surgeries that they are going to have to pay for down the road. I'm so worried that they won't pay for the stimulator because there's not a lot of data that proves that it works. I got the idea from our holistic doc. I'm praying that something will come of it and that the insurance will pay for it. It is daily treatments of 40 minutes each. Tuli also has to stay in the cast for another 4 weeks whether we stimulate it or not. I don't know how this kid puts up with it. He never complains about it. I would be complaining through the whole thing, but not the stone.

Well, thanks for stopping by. I'm happy and excited by the news, and I hope you are too!

Love,

Janelle & the Kinikini Klan

Thursday, April 14, 2005 8:06 AM MT

OK, here's the lowdown on the trip to scanville. On our way to our destination, we had several road blocks. Not figuratively speaking, I mean we had tons of construction, so we were late, even though I left early. Doesn't it always kind of go like that? It seems like no matter what time I leave, I'm always ten minutes late.

So, we get to the hospital and have to wait again in registration. Once we get to radiology, we are taken back, and Tuli gets poked for his bone scan. Right after we are taken to CT scan, and then x-ray. All of this happens relatively quickly, and I am excited thinking that we may get out of there before Christmas. When we go to his x-ray, the technician lines him up in front of the machine, looks at his cast and goes to consult some phantom of higher authority. She comes back and says that they have cancelled the chest x-ray and shoulder x-ray. I told her that I didn't think it was a big deal if it wasn't perfect, but that if we could at least get most of his lungs and maybe turn him and get a better shot of his shoulder. But, to no avail, because she wasn't even willing to try. It is so frustrating when people are in the medical field and they are lazy. She didn't even take one picture to see how it turned out. It's funny how when Tuli goes to the orthopedic doc, they take an x-ray, even with the cast on. Funny how they can and she can't. That was a little irksome. So, we have about 45 minutes before the bone scan and we go down and wait. Buzz Lightyear was the game of choice, and I brought a trusty novel. Wasn't so bad, we're used to it by now.

I love the techs in the bone scan. There are always two guys there, and they are super nice, and they know Tuli by now, and really went out of their way to get a really good picture of the arm. They about turned the machine upside down just so it would work. Talk about two different extremes from x-ray to bone scan.

It is noon and we are done (No echogram. There's no way with the upper body cast.). Instead of "wasting time" getting lunch, we head straight down to the clinic so that we can hurry and get out of there. At the clinic we are weighed and tagged and sent to our room. Now is the waiting game. I asked the weigh-in nurse how long they were going to hold us, and if we should order some food? She went and consulted some higher power (probably her facial hair tweezers), and came and told us "Oh no, you're not even going to be here long enough for it to come and be delivered." Hallelujah, could it be true? Oh, this was a wonderful turn of events...Until 2 hours later, and we were still there. We didn't get out of there until 3:00 and hadn't eaten all day. I was ticked. I actually expected to wait (hence the reason I asked for nourishment), and I don't even think they even know why they are keeping you there. I guess we were waiting for the bone scan. But why can't they just send you home and then call you with the results? I don't understand that one.

Now for the news. The CT scan looked fine. Didn't see anything. The bone scan showed some activity in the left shoulder. Yes, I said the left shoulder. This is the opposite of the original tumor. Then they said that they didn't think it was anything, but just to make sure, and since they don't have an x-ray to refer to (now at this point I feel like going down to that x-ray tech and beating her up), they are going to have us take an x-ray at the orthopedic doctor the following Tuesday and have him look at it. Now, I can't decide if this is because he is qualified to look at tumors or if our Oncologist is too lazy. It's such a great feeling to have them basically say "We think there might be cancer in his arm, but just wait a week or so and then we'll see." As if scans are not nerve racking enough, now I get to wait a week to make sure it's NOT another tumor. Oooooo, the frustration.

OK, I keep telling myself not to worry until they tell me to worry. It saddens me to think it might be something (I think that's an understatement). It seems like my son just barely learned how to really laugh again after a year. I don't want that taken away again. I just praying there is nothing wrong.

Well, I wish I could end on a much happier note, but not this time.

See ya later,

Janelle & the Kinikini Klan

Friday, April 8, 2005 3:30 PM MT

Things are going relatively well. Tuli hates his cast. I would too. It looks as uncomfortable as heck, but I'm resting a lot easier knowing that arm can't move at all!!

Tuesday, April 12 Tuli is getting his 3 months scans. I would be lying if I said I'm not nervous.

Remember, Sunday is our prayer/fasting day for Tuli's arm. Could you please include his scans as well? Thanks everyone!

Love,

Janelle & the Kinikini Klan

Monday, April 4, 2005 8:54 PM MT

Well, I have some not so great news. On Thursday, we took Tuli to the orthopaedic doc and the x-ray showed that he is once again slowly working out the screws from his arm. After thinking about it over the weekend and telling him about 2 billion times to sit down and stop swinging his arm around, we have decided to once again put him in the upper body cast. This I am not looking forward to, but we are between a rock and a hard place. If we can't get his arm to heal, we are looking at more surgery and possibly going into his pelvis to get bone graphs. It's going to get to a point where there's not much more to work with. You can only screw into a spot on a bone so many times.

So, this Sunday is fast Sunday. For those of you who are not of our faith, this is a day where we go without food so that we can do away with the natural man and become more in tune with the spirit of God. It is also a time where we pray for things we may need (in this case healing) and show our commitment to Heavenly Father by casting off the natural man and going without food. Whether you are fasting on Sunday, or not fasting, please either include Tuli in your fasting prayers or say a prayer for him that his arm may heal, and heal quickly. Each and every prayer helps so much, and each one of you with your prayers of support will help our family get through this.

Thanks to everyone. We love you all so much and feel your love.

Thanks,

Janelle & the Kinikini Klan

Wednesday, March 30, 2005 1:15 PM MT

So, continuing where I left off...I remember turning to Ben and doing what any good informed parent would do. I said "Shouldn't we get a second opinion?" The oncologist was...should I say annoyed?...I know she meant well. They were so sure. She said "The lady that looked at the tumor wrote the book on Osteosarcoma. You can ask someone else, but you wouldn't have someone more qualified." I remember feeling very inferior. Aren't you supposed to ask for a second opinion? I think she thought time was of the essence, but didn't want to tell us that if we waited he would only get worse. I now know that this is what she was thinking. That we would spend weeks or months trying to "make sure" and that he wouldn't have a fighting chance when the results came back that it was Osteo. We would be too late. I see that now. The night before we went in for chemo, his shoulder was so big that it had almost doubled in size. I think that tumor was growing faster then they wanted us to know. That's how I know that not getting a second opinion was a good decision. I think if we would have waited, Tuli wouldn't be here today. I was so lost. I didn't know if I was doing the right thing. I always was against chemo. I figured that if anyone in my family got cancer, that we would try some different treatment. Something ground breaking. Well, when you're scared to death, you don't feel like messing around. That was the point where I said "Give him what you have to to make him well."

We found out on a Friday. March 19, 2004. They sent us home and told us that we had to be there Tuesday, March 23 to have a port implanted and the first dose of chemo administered. I remember them giving me the treatment schedule. Pages and pages of information that I didn't want to read. I didn't want to read about the side effects. It's not that I didn't want to be informed, well, I just didn't want to know. I didn't want to read about all these awful things that might happen because I knew the decision would still be the same. We would still do chemo, and there was nothing I could do about the side effects. I honestly could not read that list for months.

The schedule spelled out 12 weeks of chemo and then surgery. After surgery there was then an additional 22 weeks of chemotherapy. I remember my brain not being able to wrap itself around it. I went and told my boss that it would be 12 or 13 weeks and then we would be done. I know...you're saying...huh? Yeah, that's what I mean. I couldn't wrap my brain around the fact that this was going to take like 8 or 9 months. They say that your mind only comprehends what it can handle. Well, this was the case. It took me another week or two to realize that this was going to be much longer than a few months.

The morning of the 23rd, I woke early. Early you say? (I am not an early riser). Yes, it was early. I felt so mixed up inside. I was so against chemo. I just couldn't stomach the fact that we were going to do that to him, and I had had some bad experiences in the previous days with people who had given me a hard time. Some close family members denied it. They did not believe he had cancer. They told me that the doctors didn't know anything. They said that when the doctors can't understand something, they just say it's cancer. This made my confusion worse. I really needed some united support in my time of turmoil. I woke in the morning and called my mom and dad and said "Please tell me I'm doing the right thing." My parents said "What else would you do? There is no other way right now. You're doing the right thing. You're trying to save your child the best way you know how." Then they told me to get on my knees and pray. Ask my father in heaven to give my peace in my decision. I did this. I got on my knees and said "We are going to take my son up to the hospital to get chemo. This is the decision we've made. If it is not right, please let me know." I waited there for some time. I finally rose up from my knees and knew that what we were doing was right. I have not doubted since this day that chemo was the best choice for Tuli. I also knew without a doubt in my heart that everything was going to be fine. I'm not saying that I knew Tuli was going to make it. It was more of putting it in God's hands. I knew that if Tuli didn't make it that it was God's will. I knew that no matter what the outcome, that all would be well. I have a firm belief of a life after this. I knew that the Lord would take care of Tuli. That he would take care of all of us. This was a defining moment in my life. The time when you realize that that giving up control is the ultimate freedom. I just gave it to Heavenly Father. I know God is there, but through that experience and ones since then, I know that he loves each of us more deeply than we can comprehend. Through the coming months I felt peace at times that I should be in an insane asylum. I felt joy at times when I should be sobbing uncontrollably. I felt pride at a little boy who has grown and learned so much about himself and his purpose in life. There are still times when I say "I hate this." That is true. But, I know that it is for something greater than us. I don't know what, but I know that someday I will know why. I don't ask why. I know there is a reason for everything.

Love you all,

Janelle & the Kinikini Klan

Thursday, March 17, 2005 1:12 PM MT

>March 12, 2004 was the first day I ever hear the "C" word in relation to my child. I came home from work to a sobbing little boy. My seven year old had been complaining about his shoulder for what had seemed like several months now. Right after Christmas Tuli had gone snowmobiling and had fallen off a few times. He told me his shoulder hurt, and I told him he must have just landed hard. On New Year's Day, we did a talent for the Kinikini New Year, and Tuli could not lift his arm. I shamefully now remember being a little peturbed that something was wrong with it. I was worried, but to me it was just frustrating and annoying that there was something wrong because I didn't know how to fix it. It seems like with 5 kids there is always someone who has an ache or pain or they're sick. I told him that he was probably sleeping wrong on it or something. Finally, a few weeks later, I could no longer ignore that he was complaining about it more and more and took him to the doc. His pediatrician said that it was most likely tendonitis and that he need to wear a sling to keep it immoble so that the inflammation would come down and it would heal. For 3 to 5 weeks we kept this sling on. Nothing helped. I finally went and saw another doc and she was mystified and told me to go see an orthopaetic doc. I made an appointment 2 weeks out because there was some big Orthopaedic Convention and no orthopaedic in town was taking appointments. This all led up to March 12th.

I came home to not just a crying child, but a sobbing hysterical one. What you have to understand, is Tuli is not a cry baby. He doesn't cry unless something is very wrong. To hear him wailing in pain just because one of his sisters had bumped his arm was heart wrenching. I could remember the week before when we had a slumber party with all the cousins. I was going to lay down on the floor with the kids and I pushed Tuli to the side. It made his arm move, and he cried out in pain in his sleep and kept sobbing while he was sleeping. I remember sitting there next to him, in the dark, crying, holding my legs and rocking back and forth and crying out "What is wrong with you? What is wrong with my boy?" I never thought that something was eating away at him from the inside.

So, as I came home on March 12, I called down to the same Pediatrician's office that had diagnosed tendonitis and spoke, no, pleaded and begged on the phone for the doctor that was in that day to look at my son. His Orthopaedic appointment was still a week or two away. I just couldn't see him waiting that long. The nurse on the phone could hear Tuli wailing in the background and bless her heart she said they would stay late and look at him.

We went down, just Tuli and me. They decided to take an x-ray. Why no one ever thought of that before is beyond me. But, it finally got done. I remember being kind of relieved because I figured now we would find something wrong and be able to fix it. I figured that there was a hairline fracture or something and it just need to be in a cast. When the doctor called us back to the room, and as I walked through the door, I remember saying "Please tell me you found something." The doctor let out a little half laugh. One that was kind of forced, and not really a laugh. He put the xray up on the light and started into a very long explanation of what he called "Ewing's Sarcoma". Something tickled in the back of my brain, because just a few months earlier, there had been a boy here in Utah who had Ewing's Sarcoma who had refused chemo and his parents had been taken to court by the state. There was a huge uproar about parent's rights and all that stuff. That's why it was right there in my mind. I said "I think I've heard of that." It took a few minutes to register. As the doctor started to go on about something else (he never wanted to say the words "tumor" or "cancer") I said, "Wait...are you saying this is a tumor?" He said "yes". I said, "That's not good." I looked at Tuli and I quickly turned around because I didn't want him to see the tears that came and quickly ran down my face. Thankfully, his wonderful doctor filled in the void and reached over and started to talk to Tuli about what was going on. Once I got myself together I turned around, and I told Tuli this wasn't for sure, and that no matter what was wrong, that he was going to be alright and he didn't need to worry. I still go to that Pediatrician. He was so wonderful that day, and I'm so grateful that he saw Tuli that day and had the insight to finally take an xray.

The appointment was on a Friday. After we were done, we went home. I remember my heart feeling so heavy. Here was my little boy who I had once called "Unbreakable" because he had never gotten sick, and he might have a terrible disease that could kill him. I have never felt so scared. Worse than that, I had to still tell Ben. I took him straight into the room, and when I said "cancer" Ben collapsed on the bed. It's like someone had knocked the wind out of him. He immediately denied that it could be happening. My husband, the kind of cynic said "No, that's not what it is. The doctor is wrong." I said, "I think he's right. I saw the xray." Once again, this was a friday. We were not scheduled for testing at Primary Children's until Monday, March 15. That was one of the longest weekends of my life. I think I just stared at Tuli all weekend. I kept looking at his shoulder to see if there was something growing there, as if it would change before my eyes. It was pretty swollen.

Monday, the 15th we went up to Primary Children's. Tuli's MRI was first, and I remember him being kind of traumatized and crying in the MRI. What we found out the next day was that the arm was broken and it was incredibly painful for him to lay there with his arm strapped to his side. We told Tuli that the MRI was his special rocket ship. He didn't buy that. It was hard for him. I remember sitting outside the machine with my head down just praying my guts out that it not be true. I know Ben was praying the whole time as well. By March 17th, one year ago today, we had had our first dose of what was going to be one crazy ride. By this time Tuli had undergone MRI's, CT scans, biopsies, xrays, audiograms, cardiograms, you name it. We had one day off on the 18th, and were due to go back to the hospital on the 19th of March. I already knew. I already knew what was there. I knew it in my heart. I knew he had cancer. When the oncologist told me that it was positive Osteosarcoma, I had already known. What was even harder was actually making the decision to put the poison we call chemo into my child. I'll talk about that later. I think I've cried enough for today.

On a happy note, we went to Disney on Ice last night with Jo, Parker, Neal, Christine and some of their friends. We also went with Alisa, Devin, Kara, and their Grandma Gwen. We got a picture of the three boys. Parker wasn't too happy at that point, but it is a picture. We wanted it for Ms. Pam.

Thanks for stopping by. It's been a crazy year.

Love,

Janelle & the Kinikini Klan

Saturday, March 5, 2005 2:20 PM MT

Well, I have to apologize to everyone. I am so thankful to all of you who check up on our little family. Unfortunately, I haven't had a lot of time to answer back to everyone. I have just been overwhelmed this week. It's partly my own fault, but it's also the fact that I'm back to work. That and the fact that I want to get my house done so bad. I just don't want to drag it out anymore. Every spare minute I have is painting, or sanding, or stripping.

So, thank you to all of you. Know that we are thinking of you and are so thankful for your love and support. Tuli is doing well. Going to school, and doing normal kid things. His hair is growing in ernest. Sometimes I just get a little teary-eyed knowing that it was almost this time last year that we didn't know if we would have him here on this earth today. March 19th will be his anniversary of diagnosis. I get all choked up sometimes when I see him playing and goofing around and being silly. I wonder how I would feel if I didn't have him here right now to do that. I am so thankful, and I am counting my blessings every day. It also makes my heart ache for the parents who are not so lucky.

We went to the ortho doc on thursday, and they x-rayed his arm and the have a heavy duty plate in there. If they knew my son well enough, they would've put that plate in there to start with. It's going to take a lot to break it this time. We are in no hurry to take it out of splint, and only take it out to shower or bathe. It's just some added strength right now while it's healing. We will go back and see the doc on the 31st.

Thanks everyone!

Love ya!

Janelle & the Kinikini Klan

Friday, February 25, 2005 1:51 PM MT

Tile after tile after tile. It is not a big entryway, but wow, tile sure is a process. Ben layed it all by himself. I'm so proud of my big guy! Today I am putting on the corner rounds and mudding up the wall some more. After that I'm going to strip the cupboards in the kitchen and after that I'm going to paint the livingroom...then after that...well, there's so much to do, we'll talk about that when we get there.

Tuli is doing well. He is back in school. They had half days this week because of parent conferences, so it's been a good week for him to go back and adjust. Next week he will go back full days. The nurse took off the splint at Dr. Scott's the other day, and I can't believe how fast the incision is healing. Tuli's last incision took forever to get better, but maybe it's because he had no white blood cells? It looks great, and I can't wait for him to be able to use it again.

So, how is everyone? I've been so busy remodeling that I haven't gotten onto the internet much lately. There just isn't a lot of time. Hope all of you are doing well. I better get back to the joint compound!!!

See ya later,

Janelle & the Kinikini Klan

Saturday, February 19, 2005 12:24 PM MT

Well, we did get out on Wednesday. We did one of those 5 minute disappearing acts like Alisa said. It was so nice to come home. Tuli seemed much better, and by yesterday was off pain pills and running around the house sword fighting with his sisters (one handed of course!). Nothing gets this kid down. His inner spirit is one of the most resilient I have ever seen. He just has this amazing ability to get happy quick.

Well, I haven't updated until today because I spent all day Thursday helping Ben put up a wall in the house. We are trying to slowly but surely get out house fixed up a little bit. We are laying tile this weekend. I'm excited for things to finally be going forward and to have the time to actually get some things done.

I am also going back to work a week from Monday. Quest finally called me and they have a position open. Part time nights. Ben wanted me to work days, which is nice, but I don't really like to have to drop off the babies every day. Even though my in-laws take care of them, it's still hard for them to have to "relocate" every day and not be able to be home with Mom or Dad. So, I am going to work evenings 7:00p to midnight. I am going to try and get them to let me come in 4 days a week instead of 5. Tuesday through Friday. It's a pretty good schedule, and things are always changing, so later on I will probably be able to go days. I can't wait to get all of my kids in school so I can just work while they are there and not have to leave my family so much.

Well, isn't it nice to worry about these "normal" things? I'm sorry if it's boring. I couldn't be happier about our life being boring right now!

Thanks for stopping by.

Love,

Janelle & the Kinikini Klan

Wednesday, February 16, 2005 2:05 PM MT

We are doing much better. Last night we had his pain under control and we were able to sleep through the night. Well, except for the times when Tuli would murmur in his sleep. He talks in his sleep just like his dad, and when he is on pain meds, he does it even a little more. I think it was a dream about being a super hero or something. Well kiddo, you're closer to that dream being a reality than you even realize.

Last night was a great night. We had lots of visitors. Jo came with her RM (for those not in the Utah lingo, that means Return Missionary...check out Parker's site linked from Tuli's) Christine. She really is very tiny!!! But, cute as a bug's ear! My parents stopped by right after and kept trying to set her up with my nephew Ryan. I told Christine to leave me a note on Tuli's site if she was interested. She's sooooo cute! It was so great to visit with Jo and her. We had a great time laughing and talking with my parents. After my parents left, Ben came by and we had more great time talking with Jo and Christine. Jo, I love you so much! Thank you so much for thinking about our little family. It really means so much and is such a great example of Christ-like love. Also, along these same lines I have to thank Alisa. She has been there for me so much in the last couple of months and I only wish I had known her from the very beginning. I am also grateful to Tina, who has been such a true friend through this whole thing and has religiously read my emails for almost a year. And let me tell you. Once you've know me for a month, there's not much else to tell. Thanks for bearing with me Tina! These friends mean so much to me, as do all of you who send a kind note, email, make a call, or just care. I am so grateful for all of you.

Ben came by later on today and we just got back from eating lunch in the cafeteria. Tuli got in a wheelchair and came down with us. He is off his morphine pump, off his IV, and off his catheter. We are just waiting for some urine output so that we can go home. We should be out of here within the next couple of hours. We don't really stick around much longer than we need to. It's not like this is a bowl of laughs for us. When they say we can go, we can be out of here within five minutes. It's really something to see.

Anyway, thanks to all of you who have been thinking about Tuli and our little family these past few days. We feel your thoughts and prayers and are so grateful to all of you.

One final note. If you tuned in to the KSL Radiothon today that raises money for the financial charity organization at PCMC, you could've caught Ben, Tuli, and me at 12:00 noon. I didn't have time to call and tell anyone about it, but Shelly Osterlow interviewed us and Tuli and we were able to help with a good cause and ask people to call in and donate money to help these family with their medical bills. It was a nice experience and will be a good memory for us.

It's been a good day, and we know that there are more good days to come. I know that we've come to that light at the end of the tunnel that we've waiting all year to reach. I feel a great sense of accomplishment, if not for accomplishing something, at least just surviving something with my mind intact. I feel a better person for all of it, and I know that I have learned so much. I love my little boy. I'm so proud of him. I'm proud of all my family. We made it, and God willing won't have to do it again. If we have to do it again, we know that we will survive, and knowing that you can do it is half the battle.

We love you all,

Love,

Janelle & the Kinikini Klan

Tuesday, February 15, 2005 10:54 AM MT

Well, I'm sorry that I haven't really been updating, but I wanted to give everyone time to come and read about our vacation. But, there is a new development that I haven't really talked about, and that is the fact that Tuli has been scheduled for surgery soon. And by soon, I mean that his surgery was yesterday. I'm sorry that I haven't said anything, but really it seemed like just another thing that we had to do. I didn't really feel stressed about it or anything, but I just knew it was something that was going to happen. You know, just major surgery. No biggie.

Well, here is my timeline for yesterday's surgery:

7:30a....Alarm goes off, but I don't wake up and sleep in until 8:07. Run in, wake up the girls, make them get dressed quickly and get them out the door at 8:27 (school is at 8:30).

8:30a....Watch TV on the couch with Ben and Tuli.

9:30a....Start getting ready to go. Laundry, packing, waking up baby JJ and Arla. Get everyone dressed. Get all the stuff in the car. Get all the people in the car.

11:00a....Arrive at Grandma Kinikin's and drop off the kids. Didn't have time to buy diapers, feed them breakfast, so plunk some money on the table and kiss them quickly and leave to a screaming child.

11:20a....Arrive at surgery and check in.

11:25a....Get taken back where Tuli puts on pajamas, gets a finger poke and milked like a cow for a CBC.

11:45a....Go to surgical waiting room and watch Tuli and Ben play Nintendo for over an hour!! Talk to doctors, nurses, etc. Doctor Scott tells us that they may have to take some bone from Tuli's hip. Bad news.

1:00p....Ben and I walk Tuli down the hallway and say goodbye. I haven't really been stressed up to this point. Then I realize that we're going to have major surgery.

1:30p....After getting lunch, Ben and I go to the waiting room and wait.

3:15p....Tuli comes out of surgery and everything went well. Dr. Scott said that the screws were trying to work their way through the skin and that was what had been so painful in Orlando. He gave me the old screws as a "momento". They didn't have to take any bone from his hip. For that I am so grateful. They used donor bone. I did not want another part of his body violated. I have just had enough.

3:45p....They take me to recovery where Tuli is screaming. We spend the next 45 minutes trying to get enough morphine into him so that he wasn't in pain. Morphine, Zofran, and a dose of Tylenol later, he finally calms down and dozes off.

5:00p....We roll him up to his room on the 3rd floor. No more 4th floor for this kid. He doesn't have cancer anymore, so they don't take him to the cancer ward. They take him in with the "normal" kids. Weird feeling.

5:05p....Ben comes back from picking up the girls, and Ben, Lia, Lani, Tuli, and I all watch Peter Pan on the TV.

6:30p....Ben and the girls leave. Tuli gets teary-eyed wanting them to stay. This is the beginning of a long night.

6:30p to 12:00p....On and off pain, but pretty much under control. Mom reads a book. Tuli wakes up at one point and starts crying saying "I can't do my chores. If I can't do my chores, then I won't get my allowance." I reassure him that he has earned any allowance he would've gotten this week for what he had to go through this day. Alisa called me during this time, and I was so grateful to her. Tuli said "She's cool." That is a huge compliment from this kid.

12:30a....In a lot of pain. Asked for another dose of Tylenol.

1:30a....Talked to nurse about pain, and the docs ordered the demand dose upped to .75 instead of .5. This seems to help for a time.

2:00a....Tuli's pretty calm and we have a nice long talk about his baptism, and what it all means, and about life in general and how his life is all part of a plan. We talk about having faith that everything is going to be fine. He tells me about how when he sees homeless people on the street that it makes him sad because he wants to help them. He doesn't see me, because I'm sitting next to the bed but I'm crying the whole time. I think I covered it well.

3:30a....Tuli has not been able to go to the bathroom. His kidneys just won't wake up. The nurse decides that we have to put in a temporary catheter to drain his bladder. We do this in the middle of the night and take it back out.

4:00a....Finally lay down and try to get some sleep. What seemed like 5 minutes later, Tuli askes me to come adjust his pillows. He's angry, tired, in pain. We push the demand dose and he goes back to sleep.

5:00a....Writhing, flinging, rolling himself around, Tuli's pain is out of control. I stand by the bed with my 8 year old screaming for me to help him. Tell me that I'm not helping him, and would I please do something? I tell him that the nurse is getting something more. That there's nothing else I can do. The whole night is "I'm sorry son. I'm trying to help you. I just don't know what to do." I stood over him and gave him 3 doses of morphine 1 dose every 10 minutes until finally it calmed him and put him to sleep again (sitting up of course. He won't sleep any other way after surgery.). He says "Sorry Mom, it's all my fault." I tell him it's not. It's not his fault. And he says "Yes, it is."

5:30a....Nurse administers dose of Valium, which seems to help for the next few hours.

6:00a....Tuli wakes up and pushes his dose button and calls for me. I go and stand by the bed, and as he dozes off, I decide to wait 10 minutes and push his button again for the heck of it so the kid will sleep. The nurse comes in and tells me that "Really, he should push his own button." OK, don't get me started. I felt like popping her in the mouth. She has no freakin' idea. She can take her self-righteous attitude and go fry in it!

7:00a....What has been a long night seems like it may end and we can get a little sleep until....3 nurses, 4 doctors, 1 phlebotomist, and a partridge in a pear tree decide to all come in the room within the next hour. As if since they went home and got a fabulous night's sleep, they feel that everyone else should've had the same and come in talking and chit chatting, leaving open the door, and my favorite....training a new nurse. Oh yes please, let's do that blood pressure just one more time on this kid. There's no other kid in the entire hospital that may have had a less stressful night.

Did I ever mention that I'm so sick of hospitals, that I could just puke. Well, I am.

Thanks for joining me for the last 24hrs. I better get back to my baby and help him eat breakfast.

Thanks to everyone!

Love,

Janelle & the Kinikini Klan

Sunday, February 6, 2005 10:19 AM MT

THE PICS FOR THE TRIP ARE UP!!! CHECK THEM OUT!!1

THE TRIP WAS AWESOME!!!! I just wanted the trip to be good, and it was better than I ever could have hoped for. The only bad thing, is we got pretty tired towards the end of the week, but still had a lot of fun.

On Sunday we arrived in Give Kids the World. It was amazing. It's a little Disney resort in itself. It was an arcade, train rides, pony rides, miniature golf, a movie theatre, and two swimming pools, one with a water playland. It has a restaurant that serves breakfast and dinner, and an ice cream palace that serves ice cream and sandwiches for lunch. In Give Kids, you don't have to spend a dime. Everything is free. You can even order pizza from 4:30p to 10:30p....free. I was blown away by this place. You could spend the whole week there and not go to the parks. But, you have to do the parks. They are a must.

On Monday we started out at the Magic Kingdom, and since we were all fresh it ended up being the best day. We were able to ride everything. We saw Mickey and Minnie, Winnie the Pooh, and the Princesses (Arla loved that). Tuli got VIP treatment all the way. We would take him to the exits or to the wheelchair entrance and they would see his Give Kids pin and we would go straight to the front of the line. This happened in all the parks. It was awesome!

Tuesday was Epcot and MGM. It was almost impossible to fit in two parks in one day, so we missed a lot at MGM, but at least we got to ride the Tower of Terror, Aerosmith's Rockin' Roller Coaster, and see the Fantasmic show at the end of the night. That was Ben's favorite show. I would recommend that if you have kids, you go to Epcot and ride the Test Track and then leave. There's really not a lot for young children. It's more museum type stuff and a cultural experience. More adult oriented.

Wednesday, was the Animal Kingdom. I just loved it there. It was so beautiful. We went on safari, and rode the water rapids where Tuli lost his hat. We also saw the Lion King show. That was my favorite show.

On Thursday we went to Sea World. We were so exhausted by this day, that at about 4:00 we were ready to call it a day instead of staying until 7:00 when the parks closes. We did stay to catch feeding the dolphins, and left there at about 5:30. It was fun, but I think if I could have done it again, I would have spent the morning at Sea World and then gone to Universal Studios.

On Friday we did go to Universal Studios. There are two parks there. Universal Studios and Islands of Adventure. We did all of Universal, but only got half way through Islands. My two favorite rides were here. The Mummy and The Hulk which was my favorite roller coaster. In Islands of Adventure they also have a section that is all the super heroes. When we walked through there, they saw Tuli's button, and they called us over and we were able to take pictures with all the X-Men and Spiderman. Just Tuli and our family with all of them together. It was so cool. An awesome experience for Tuli who loves Wolverine and Spiderman. I so want to go back to Islands of Adventure and do the other side of it.

So, as you can see, it was awesome. We had a little misshap with Lani when we were leaving Animal Kingdom on Wednesday. We were renting (Did I say renting? When they see Tuli's button they are free rentals.) wheelchairs for Tuli and when I went to drop it off, we all took off and Lani got left behind. It only took me about 30 seconds to realize that she wasn't there, but by that time we had covered about 30 or 40 feet. I ran back to the entrance frantic and trying to find her. Then my phone rang, and Ben said that she was at the shop where we had dropped off the wheelchair. I ran back there and the attendant at the shop said that he had found the index card in her fanny pack and called the number. Before I left for the trip my mom brought all of these fanny packs and told me that she thought it would be a good idea to fill out cards that had all of the kids info on them and who to call in case they got lost. Well, I did that, and wouldn't you know. Mom always knows best. Lani said that this little family coming out of the park saw that she was lost and took her over to the store, and they used that card, and well, what a blessing.

Anyway, also on the downside, Tuli's arm was hurting. I think that it was all the riding and the fact that he was so tired. But, he had a really hard time, especially towards the end of the week. We are going to schedule his operation ASAP.

I just can't tell you how awesome Give Kids the World is. By the way, if any of you still have your Disney wish to fill, check out the orientation video. The Kinikini family is on the video. It shows us checking in. They were making the new video the day we arrived, and asked us to be in it. It's very authentic because we really had just gotten in, and looked very travel worn.

Also, we have tons of pics, so I will be posting them soon.

Thanks for stopping by and reading about our Disney trip. It was awesome, and I recommend it to anyone. Leaving JJ home was hard, but a good call. I think it would have been way too hard to take him. If the kids are over 3 years old, it's a great trip.

Now I'm going to go sleep for 3 days.

See ya later!

Love,

Janelle & the Kinikini Klan

Monday, January 24, 2005 3:19 PM MT

Hey there everyone! Well, we had a great party at Make A Wish. I want to thank everyone who came and everyone who gave Tuli some great stuff for his trip. We have so many activities for the plane, and snacks, and all kinds of stuff. At the party we went in the "Wishing Room". It is a white, round room and it lights up in different colors. In there, Tuli made his wish, and put it in a pod and when we came out of the room, everyone was waiting and surprised him. In there, the told him his wish had come true and that we were going to Disney World in 10 days. I don't think he realized what was going on at first. I said to him after the party "So, are you excited to go to Disney World." And he said "When are we going?".

We are so excited to leave on our trip. We are leaving on Sunday morning and returning the 5th of February. We have already started to pack. Thanks to everyone!!!

Good bye cold Utah!!!!!!

Love,

Janelle & the Kinikini Klan

Monday, January 17, 2005 12:49 PM MT

Well, we made a big step today. Tuli got his port out this morning. When his scans came back clear they were pushing to do it ASAP. So, it's out. That just kind of hit home for me that the chemo is really done. He went up with Dad at 8:30 this morning and was back at 11:00a no worse for the wear. He's playing video games right now with his cousin.

Well, we just love the emergency room. We just can't seem to stay away. On Thursday night last week, I had to take Arla up there. I went to put her to bed, and noticed that her jaw right under her ear was swollen so big that it looked like her jaw was broken. Ben's sister came over and we rushed to the hospital so that we could wait. After 3 hours we heard the words we had waited for: "It's a virus, it will go away by itself. The parotid gland was swollen up." This used to be common with Mumps. They said that it could be like 6 or 7 different viruses, but to find out which virus it was they would have to stick a cotton swab all the way up her nose and run the test just for curiosity sake. Since she was sleeping, I was really in no mood to stick something up her nose just for the heck of it, so we left. The next day the swelling went down and she never had any other symptoms. The funny thing about all this, is Arla got one of the wrist bands that they all get at the hospital. She thought this was really neat and kept telling everyone that she had "cancer on her ear". Oh sheesh, I hope not. But it was funny, because she's only 3 years old. Then, when I cut the bracelet off, she said "OK, I'm all done with my cancer." Wish it could be that easy.

We spent the weekend up in Midway. We went to my Grandma Kohler's 90th birthday. On Sunday we went to church with my mom and dad. We had a good time. On Thursday, we are going to have Tuli's Make A Wish party. They are going to grant his wish for him, and we are going to spend the next week getting ready. We are also trying to schedule his baptism around the 29th of January, just the few days before we leave. So, friends and family that want to come, keep this in mind. I will let you know the exact date when it is finalized.

Now, I am going to see what I can do to get this house fixed up. I've been needing to do it for a long time, but it needs done badly. I've had enough. I'm going to try and get as much done as I can before I go back to work. I called Quest the other day, but just got Matt's voicemail. I'm going to see if they have anything open there since I haven't heard from JetBlue (dang it!).

Thanks for stopping by! Much love to you all!

Love,

Janelle & the Kinikini Klan

Thursday, January 13, 2005 2:17 PM MT

Hi everyone. Sorry that I am not as good with updates now as I used to be. It's nice though to be back doing normal things and not be so caught up in the turmoil of chemo. It is just all consuming, so I have to vent my feelings more often. So, it is a good thing that I don't feel like I have to update as much because it means things are more normal.

Tuesday and yesterday were both taken up by follow-up scans. Everything came back good. There was just one little place below his right lung that they said looked like a small infection, but they didn't think it was cancer cells. I would love for them to just say that they didn't see anything. I hate it when they even see something like that, because it doesn't give you total peace of mind. But, I am grateful that they think that he's OK, and that everything looks relatively good. No cancer growing. They want to take out his port, so we think that we may do that next week before we go to Florida.

Speaking of which, we are going to have a big bash at Make A Wish and they will grant Tuli's wish and have a big party for him. We are going to do it the week before we leave on our trip. We are excited about our trip and can't wait until we can tell the kids. They won't know until we have this party, and it is killing Ben and me because we want to tell them so bad.

We are also trying to arrange Tuli's baptism for the day before we leave on our trip. This is not the best day to do it, in my mother's opinion, because I will be trying to get ready to go, but it is when Ben, the priesthood holder wants to do it. So, I am going to try and keep it low key and just do a small thing so that we can get ready for our trip.

Thanks for stopping by. We should be getting surgery in February or March. Not too excited about that. Hopefully the bone stimulator will help.

Love all of you,

Janelle & the Kinikini Klan

Wednesday, January 5, 2005 1:28 PM MT

Well, there is good news and bad news. The bad news first. We went to the orthopaedic doc yesterday and the arm is not healing. Tuli is going to have to have surgery to repair the arm. It will involve another bone graph and plate and more screws. We had been so good about not taking the arm out of the brace. We hadn't taken the brace off for at least six weeks and the sock on his arm was black. This was all for nothing, because the middle of his upper arm still moves like rubber.

I put him in the tub last night and finally took the brace off so we could wash the skin because it gets so incredibly dry, and it was grossing me out. I was holding the arm to keep it from moving too much and breaking more, and I could feel it moving around against the screws. Ewwwwwww. I kept gagging like I was going to throw up and it was making Tuli laugh.

The good news is that we don't have to do this surgery immediately. We could even wait 3 or 4 months if we want to and just keep the arm in a brace. It's not going to affect it either way. This gives us some breathing space, because I wasn't really in the mood surgery and admittance for 5 or 6 days again, and recovery for 6 to 8 weeks. Plus, as I said before, we are going to DisneyWorld soon. We are just waiting for Make A Wish to say the word...shhhh don't tell Tuli. He doesn't know. They are going to surprise him. So, we are going to wait until after our trip. The only drawback is we can't go swimming.

I am seriously debating just letting it go like 3 or 4 months and seeing what happens. Seeing if we can get a bone stimulator or something from Dr. Jarvis (our holistic doc). Dr. Jarvis said that with an electric stimulator, he was able to make a bone in his leg fuse back together that the orthos kept telling him would never heal. It's not second rate info, he did it on himself.

Well, you probably have seen all of these reality shows where these people want to get plastic surgery for this or that. They don't like their nose, or their chin, or they want the fat sucked off their hips, or their stomach, or something like that. It made me cry last night, because I looked at my little boy who had absolutely no choice as to whether or not he wanted his arm mutilated, and these people make me sick. "Oh, this bump on my nose is just too much, and I need it taken off." What a sick world we live in. It just seems so unfair somehow. Tuli and his arm, and these people worrying about a bump on their nose. I wish that was all we had to worry about.

Thanks for stopping by! Love to you all!

Love,

Janelle & the Kinikini Klan

Tuesday, January 4, 2005 8:21 AM MT

I just got the kids off to school. Boy, after such a crazy year, it is amazing how things can go from turmoil to normalcy. No hospital since the 18th of December feels like forever. It has been such a wonderful holiday with no hospitals, no scans, no nothing.

Today we will go see the orthopedic doc. It is our first appointment since November and when Tuli broke his arm. We have kept it in a brace for a month and a half and I hope that there has been some healing taking place. If not, then we may have to do surgery again to brace the bone on the inside with a plate. Yesterday Tuli came home and told me that he had been playing football at recess. Yikes! This kid is going to give me an early heart attack. But, then he assured me that they don't allow tackle football at their school, that it was just touch football. Somehow, that doesn't reassure me. I can't put him in a bubble. I just told him that he is a smart kid, and to please be smart about what he can and cannot do. He is having to learn at such an early age about what his limitations are. He told me, that he had told the kids that he couldn't carry the ball, and that he could only play on the line. Hmmmmmm. He wants to play football so bad someday. We have been telling him that he can be the kicker.

Well, these are the things that I am glad to be worrying about. To not be worrying about fevers, mouth sores, infections, hospitalizations, emergency room, ANC's, WBC's, RBC's, HCT, hydration, and my favorite: peeing every two hours all through the day and night. Oh, to not be the official urinal holder, and to not know the last time we pissed is a wonderful thing.

The baptism is sometime this month. We are going to probably be getting a special appointment for Tuli. He will not be baptised with all the other kids in the stake, because although he is doing so well, his immune system is still not the best. I think it will take him 6 months to a year to really be up to par for a lot of things. He still gets tired when he walks a far distance. But, he is eating like a horse. I think he may just catch back up to Lani (my six year old) again this year. She is in the 80 pounders somewhere now. I had this feeling that Lani would end up weighing more than Tuli by the time this whole thing was over and I was right. LOL... Tuli is in the 70's somewhere.

Well, the thing that has kept us going on many a stinky day is finally coming to fruition. Make A Wish called yesterday and I think that we will be going to DisneyWorld soon. What a wonderful thing that will be for us. I can't wait!

Thanks for stopping by. Hope that your New Year is happy and healthy! 2004 stunk! 2005 is going to be better.

Love,

Janelle

Tuesday, December 28, 2004 8:39 PM MT

I have been putting off coming on and updating our page because I am just so full of thanks for what a wonderful Christmas we had. I think that I almost didn't know how to thank everyone that was so kind to my little family this year. I didn't know how to put it into words because there was so much thanks I wanted to give. So, I'm going to try and give you a little taste of what a wonderful day it was.

We had some Sub for Santas. They kids had bags full of stuff. Lots of clothes, toys, babies, transformers, games, coats, & shoes. Quest Diagnostics (where I was working when Tuli was diagnosed) brought over bags of stuff for the kids. Aunt Raylynne, Uncle Mark, Aunt Angie, Uncle David, and Sammy sent some shoes for the kids. Sunny's mom Suzanne sent us some Xango and some much needed cash. Grandma Kinikini got some toys for them and a refurbished bike for Tuli (Oh, the arm). Grandma and Grandpa Kohler brought coats and a brand new suit for Tuli to wear at his baptism. Grandma Kohler and Aunt Priscilla and Uncle Sione Manu gave them some money. What a day!

All of these kind people helped make this the best Christmas for my children that they have ever had. In fact, I had to remind them that not all of our Christmases will probably have quite that many presents. But, they know that. They appreciated everything that was given, and I was so happy to see them have such a wonderful day after so many awful days they have had this year. Tuli was so full of joy and feeling well. I can even see sparse hairs coming in on his head and eyebrows. My son is coming back to me.

Happy New Year to you all! Hope that this new year brings lots of happiness and good health.

Love,

Janelle & the Kinikini Klan

Thursday, December 23, 2004 1:51 PM MT

All of the kids are sick with a cold/fever that has been running through the house. They are slowly getting better and we just keep giving them medicine and running the humidifier. We're still trying to get both of our vehicles fixed and having to rent a van which is serious denting our pocket book. But, despite all of this we are thankful and excitedly looking forward for Christmas.

Tuli is doing well. He is sick too, and we're pumping in the supplements and Xango. I can tell that he was a little fatigued at times this week, but I know that he is getting a little stronger each day and that things are just going to get better and better for him.

I wanted to share with all of you something that I learned at Christmas a few years ago. It is a new version of the story of Jesus' birth:

When Mary and Joseph went to the inn, there was no room. The innkeeper offered the stall for them to stay. Now, we picture the place where Jesus was born as a nice, private little building (albiet shack) with lots of warm hay in which Mary could lay down and rest. But, if you look back in history, you can learn that the place where the animals were kept was a huge courtyard. The outer perimeter of the courtyard there was sectioned off little open "rooms". These rooms had 3 walls, but no front wall and no door. They were open to the courtyard. In each of these "rooms" a family stayed. They made their beds there and their animals stayed in the middle of the courtyard. Since all of these little cubicles were full, the place that the innkeeper offered Mary and Joseph was the only place left....the center of the courtyard. So, contrary to popular belief, Jesus was not born in a nice quiet hovel. Mary probably endured labor and delivery in the dirt, out in the open, right in the middle of that courtyard with the cows, horses, camels, etc. Can you imagine? Cold, embarassment, smelly, dirty. And...that is where the King of Kings, The only perfect being to walk to earth, and our brother Jesus Christ was born.

I just want to wish all of you the best Christmas this year. Please remember that Christmas is not about trees, lights, presents, Santas, parties, cookies, candy canes, and all of that stuff. Please remember that Christmas all started with our Savior of the World, who from the day of his birth in that courtyard, lived with humility.

I love you all!!

Love,

Janelle & the Kinikini Klan

Tuesday, December 21, 2004 9:25 AM MT

A BIG HANDEL'S MESSIAH HALLELUIA CHORUS!!!

WE ARE DONE!! WE ARE DONE!! WE ARE DONE!!

Just in time for Christmas. I paid Tuli a quarter for each glass of water that he would drink and by Friday morning (about 60 hours after chemo infusion) Tuli was .07. Our target is .10 or below. Yee haw!! That is the fastest that Tuli has ever cleared.

To celebrate we bought a big cake that said "Thank you ICS and Hem/Onc, Love Tuli and Family" and brought it and ice cream up to the unit and had a little impromptu party before we left. The Child Life sang "Happy Last Chemo to You" and gave him a blanket, and then we were outta there! I had so many emotions. Mainly relief. I was also going to miss a lot of the people I had come to know over the last few months. I was sad to say goodbye to my favorite nurses. Manny was Tuli's last nurse and he is one of his favorites. They played a little PS2 for old times sake.

There were still prescriptions to pick up, and discharges to sign, and then we were gone. When we got down to the van, I had forgotten something, and asked Tuli if he wanted to go back up with me. He said "No way.". Never has there been a more happier kid.

The weekend was spent at my mom's house. We had the Kohler family Christmas party and spent a great day with my mom and dad. I spent most of the afternoon wiring on the lights for my mom's Christmas tree so she wouldn't have to do it every year, and it was strangely satisfying knowing that I was doing that for her.

At the Christmas party for the first time in years everyone in our family was there. We waited for the arrival of my husband who got off of work late. But, it was not to be. Our van broke down (our car was already broken) and Ben was unable to make it. So, we were one person short on having everyone there. We almost made it. But it was great to see Jay and his kids (Kelli who lives with his ex-wife) there, and to just at least have all of the Grandkids and siblings in attendance. I don't think that has happened in a long time. My mom and dad were very happy. My Grandma Kohler was there. She is getting very frail and is the last surviving Grandparent on my side of the family. It was good to see her.

Monday I had scheduled Dental Surgery for Arla and Lani. After arriving at the surgery center at 7:30 for an 8:00 appointment, we waited 3 1/2 hours to get in. If I wasn't so sick, I would have really been ticked. I was throwing up in the sink in the pre-op room. Lani got 7 crowns, and Arla got a few fillings. Tuli had to get labs drawn yesterday and by the time I got home at 3:30 I was sick and exhausted. Now all the kiddos are sick to with various forms of the same virus. Coughing, fever, stuffy nose, sore throat, vomiting, diarrhea. Chemo is over and we're having meltdown. I don't think I was sick this whole time, but it is like my body said "OK, you're done. You can be sick now."

On Friday, we also got a surprise. UPS delivered 10 cases of Xango. I thought for sure it must be a mistake. One was from Suzanne (Sunny's Mom), so I thought maybe we must have gotten her distributor shipment. I asked Sunny about it on Saturday, and she said that she thinks that it was a gift from someone. I don't know who, though. Whoever it is, that is like $1100 worth of Xango. I know that it will help Tuli and I really want to thank whoever it is.

Well, I can't really explain the relief and the satisfaction of knowing that we made it through. Some people just don't really understand what has happened in our lives. It is so life-changing and so life-altering that it is impossible to explain unless it happens to you. I've learned a lot about other people. I've learned that some people are so caught up in their own lives that they can't stop and see what's going on with someone else. I hope that I've learned to stop and see other people. After all, we are in this world together. If we get so caught up in what we are doing, and don't see other of God's children around us, I think we are going to be held accountable for it. I don't mean just by seeing, but by doing.


Thank you to all of you who helped us through this journey. We realize that it is not over. Scans every few months and months of rehab for Tuli's arm will constantly remind us of what has happened. But, I feel like a huge burden has been lifted and that we have accomplished what we wanted to this year. Chemo is done. This is a huge thing. Tuli will be able to have some normalcy back. He will be able to be a kid again. Go to school. Play outside. Sleep overs. But most of all, we are so thankful to have our little boy alive and well.

Scans again in January. Please pray that they are clear. Much love to all of you!

Love,

Janelle & the Kinikini Klan

Wednesday, December 15, 2004 3:02 PM MT

WISHES FOR CHRISTMAS

On the 4th floor in the children's hospital there is a big banner on the wall. It says:

"MY WISH FOR CHRISTMAS"

Children there are invited to fill out a card and put whatever their deepest wish in all the world would be for Christmas. There are so many things to wish for, isn't there? What about a new dolly, or that new bike you've been wanting so badly? How about peace on earth? What about a new baby brother? What would your wish be?

On the banner three children had chosen to write down their deepest wish. What do you think the wish was? The card that was placed directly in the middle of the banner read:

"I WANT TO BE OUT OF THE HOSPITAL FOR CHRISTMAS"

Two other children decided to add their wishes. Do you know what they were? The other two wishes were the same. They simply said"

"ME TOO", and pointed to the first.

Why can't children be children? It's so unfair.

Well, we are going to be out for Christmas. We have two more days in the hospital (pending clearing of metho, which usually happens within 72 hours). Friday is our target date. It is unbelieveable that it is finally here. So unbelieveable that I keep asking everyone at the hospital just to make sure. "Now this is our last one, right?", "This is our last time here?". Everyone keeps saying yes, so it must be true!! I'm walking around with a perma-grin and the other parents can't understand why I have this big smile on my face. My cheeks are hurting!

Well, I'll update again later when we are out of the hospital! All of you have a great week, and thanks for stopping!

Love,

Janelle & the Kinikini Klan

Thursday, December 9, 2004 10:25 PM MT

Well, we did get counts today and will get results in the morning, but when they drew his blood he just wouldn't stop bleeding. So, I know the platelets are still not up. It will be interesting to see if they will even be up next week. I still don't understand why they didn't want to transfuse platelets this week. It's like I was used to something for months and then all the sudden they are doing weird stuff. Well, if it were up to me I wouldn't want to ever see them again either. But, hey. It is our last one. Can we please get it over with? Can't they do something to hurry it along? It's just methotrexate (Just methotrexate! That cracks me up when I say that.) I think I just need to relax and chill. Until next week.

Tuli is doing well in school, but says that he doesn't have any friends. This is actually a problem with all of my kids. I don't really understand what is the deal with my children, but they must have a low self-esteem or something. It's probably my fault. I don't know what I can do to change their outlook on stuff. I wish they would just take things in stride a little bit more and stop making everything so drama. I just tell them "Find someone that doesn't have a friend and be a friend to them. I'm sure you're not the only one." But they say "I'm the only one that doesn't have a friend." Sheesh. I don't know what to do about it.

Tuli did pretty well before his DX. I think that a lot of it has to do with the fact that he can't really relate to a lot of his peers anymore. I mean, he's seen and done too much. I think that he and his friends just grew apart this year. It's unfortunate, but I hope that soon he will be able to feel like he's "normal" again and find some friends.

Anyway, I'll let you all know if we are going in tomorrow, but I think that it is about 99

Tuesday, December 7, 2004 1:35 PM MT

DELAYED, DELAYED, DELAYED!!

As if a winter storm hit the airport, our flight plan for this week reads ALL FLIGHTS DELAYED. Today counts came back and the platelets are still too low. Funny, I never remember them delaying him for platelets before. It sounds kind of fishy. I did everything but beg them to let him come in. Oh well, this is one more week that I will have to get some Christmas shopping done early, right? But we will not, I REPEAT NOT, go in for Christmas. I don't care what they say. Over my dead body.

Again, in a way this is a blessing because Arla now has the Herpes virus that JJ had. JJ is getting better but his mouth still bugs him and Arla is just starting in at the beginning of it, so it's probably good that Mommy is still home. Before the hospital called and said not to come in I was packing our bags getting ready and JJ kept crying at my feet (like this is anything new). I think he knew that I was leaving and has been having a hard time all morning. It's amazing what a 1 1/2 year old understands. He was in a panic!!! So, I keep telling him "Mommy is not leaving today. It is OK, Mommy is not leaving." He finally wore himself out and is asleep.

Tuli is having a fabulous time at home and going to school, but is anxious to get this last one done as well. I told him we were going in today and he called me after lunch and told me that he was waiting for me in the office and could I please come get him so we can go do his chemo? I told him to go back to class, he said OK. But, I know how he feels. He just wants to BE DONE!! It's like a little cloud hanging over everything and we want the storm to pass.

Yesterday I also took all the kids to the dentist. I think between the 5 of them there are between 20 and 25 cavities and 3 or 4 crowns. Lovely. Tuli has been getting chemo this last year and all of our teeth have been rotting out of our heads. For a time that was the least of my worries, but we are going to try and get all of this dental work done this month.

Please stop by Devin's page and leave a message for him. He's in the hospital again and not feeling well.

See you all later.

Love,

Janelle & the Kinikini Klan

Sunday, December 5, 2004 4:29 PM MT

"Mom, I have show and tell tomorrow. What should I take?"

Remember when these were the normal "problems" that you had to deal with? Well, this has been our week. Normal stuff. Nothing much is going on around here. Just a few sick kiddos. JJ is getting over his mouth sores and Arla woke up at 3:00a last night with a fever. She says her stomach hurts. This is the same thing she had a few weeks ago. Wonder what is going on there.

The kids are doing great. Tuli got counts done on Monday and after they said he was fine on Monday, and to stop his neupogen, I had sent him to school. Well, after getting drawn on Thursday they call Friday morning and say that his ANC is low again and he needs to start his neupogen again, and here I had been sending him to school!! Eeeek! Ok, I didn't freak out. He hasn't gotten sick yet, so I guess he'll be alright. He had a great day on Friday because they had show and tell and he took part of his cast from his arm and they also had a popcorn party. It was so great to see him having a good time seeing friends and hanging out with "normal" kids.

Last night we went to the Make A Wish "Cookies with Santa" party. The kids all sat on Santa's lap. This is the first year we have done this. We just don't really do the Santa thing. I have always tried to teach them that Christmas is not about a man in a red suit, it is about Christ. Christmas is to celebrate the birth of our Lord and Savior. It is not about presents, it is not about raindeer, and it is certainly not about a man in a red suit. So, they don't "believe" in Santa, but we still had a good time and it was a lot of fun. We watched The Peanuts Christmas Movie and lots of cookies and milk were consumed. What is funny is I have even told Arla that Santa is not real, but now that she has seen him a few times this year she doesn't understand that he is not real, but believes that he is really this guy. Too funny. Anyway, for all of you who feel sorry for my kids because they never had the Santa experience don't be. They are fine, and well adjusted and I've never had to try and carry out this very complicated story. So, for me it works. Like I said, Jesus is our focus and who we focus Christmas on.

Tuli goes in on Tuesday pending his counts. Hopefully the neupogen has boosted them and we're good to go. If not, I'm going to be kind of peeved off because he was good to go last week and THEY delayed him. We would be done right now, but all in good time. It will happen.

Lots of love,

Janelle & the Kinikini Klan

Wednesday, December 1, 2004 1:27 PM MT

>OH, how excited I was for this week. This was the last chemo. This was the end. I was grinning all the time and no one could understand why I was so happy, especially on a chemo week. Well, that was all kind of deflated because we got Tuli's counts on Monday and they called us back and didn't have enough beds for him to come in. I guess with the Thanksgiving holiday (no one wanted to come in on Thanksgiving), and it getting colder (more people getting sick) they were filled up. Darn it! But it ended up being for the best, so read on.

Baby J has been acting sick the last few days but besides a fever and irratibility there was really nothing to pinpoint it. I figured he was teething because there was some redness in his mouth. I noticed that he had a chipped front tooth (this kid runs in to everything) on Thanksgiving and figured that I would watch it. I sat up half the night last night after another crying session trying to get him to sleep and figured that it had to be the tooth. I looked in his mouth this morning and saw some swelling and redness around his two front teeth. Well, I figured for sure that it was abscessed and called and made a dental appointment. I dragged baby and Arla out of bed and went to the Dentist and he looked in the mouth and Baby J has HERPES! Kind of like when you get a cold sore, but it is all inside his mouth and there are a few little pimple-like sores on the outside of his mouth. OUCH! And I thought that we had avoided mouth sores for this month, except it's not Tuli getting them, it's JJ. I think Lia gave it to him, because she had a cold sore on the side of her mouth for like 3 weeks or something like that and she also had a case like this one except even worse when she was 3 or 4 years old. So, it is actually a good thing that I am not in the hospital with Tuli because the baby is sick.

Oh yes, Tuli. He is feeling wonderful. I don't know if it's Peridex, Xango, diet, or all of the supplements that he is getting but he has not felt this well in months. Even after getting cisplatin a few weeks ago he hardly even skipped a beat. He is feeling so great. And they say that diet doesn't make a difference? Right. We have not been able to cut out all sugar, I mean really that is tough. But, I have cut down any candy intake. We have had no pop or cool-aid. We have eaten a lot of raw carrots and oranges. I don't even buy a lot of crackers and stuff. I give them carrots and dressing. I even found a salad dressing that has no sugar. It's called Carb Well from Kraft. It's really very good. We don't eat white bread anymore. We don't eat margarine or oil only butter. He is also not supposed to eat beaf, and we did have some the other night because it was in the freezer and I wanted to get rid of it, but from now on we're just eating chicken, fish, turkey, and occassionally pork. Thanks to the peridex he also didn't have one mouth sore in the month of November!! Yee haw!! And the docs told me that peridex didn't really work either. Says you.

So, all that said Tuli is at school today. Yes, I said he's at school. This is the first day in months and probably only the 3rd or 4th day since we took him out in March. He went to "protect" his sister Lia because she was having problems with a bully at school. She came home yesterday and told me about it and Tuli immediately said "I want to go to school tomorrow." They are best friends. He wanted to go and give her support and help her out. I told Lia that if she was in class that she needed to go immediately to the teacher and tell her that this girl was still bothering her and that her mother said that the minute that she touched her again that I wanted this other girl moved. If she doesn't get moved away from her, there is going to be problems. I'm going to go over there myself and make sure that it gets done. Then, I told Lia that if it happened outside or off of the school grounds that if this girl hit her again that she had my permission to punch her right in the nose. OHHHHHHHH!!! I know, some of you just gave a collective "Oh that's terrible!". I don't care. My kids need to learn how to protect themselves and the fact is that some people only understand what they dish out. My daughter as told the teacher, she has asked nicely for the girl to stop, and none of this has worked. If this girl seems to think that she can sit and punch and kick my daughter on the playground and pinch her in class and nothing's going to happen to her (because she lies to the teacher) then she's got another thing coming, and it's going to bloody her nose. So, that's the school of Janelle. I told Lia, "The next time she punches you, you better bloody her nose or she's not going to leave you alone for the whole year."

So, I'm kind of excited to see what happened today. If that girl touched Lia, I hope that she gave her what she deserved. If not, it will surely happen another day.

Hope all of you have a wonderful week. Next week is the last chemo FOR SURE!! Then, Christmas. Oh, I'm so excited.

Love you all,

Janelle & the Kinikini Klan

Friday, November 26, 2004 9:58 AM MT

Whew! I didn't do any computer stuff for Thanksgiving and logged on today and saw so many people come to the Guestbook!! Thank you all of you for your support and information during this time that I am making some lifestyle changes. So far, it's only been a few days and well...the first day was Thanksgiving so cutting too much out didn't go over big. We decided not to make the traditional yams where you add a ton of brown sugar and marshmallows. We had wheat rolls (thanks Mom). We did pretty well with one piece of pie and didn't take home the halloween candy that my dad wanted to send with us. Tuli did have one can of pop at Grandma Kinikini's but I said "OK, today is a holiday, but after today NO POP." That one is going to be harder than I thought. Whenever my kids wanted a snack we gave them oranges and carrots and stuff like that. It's going to be hard to stock fresh fruits and veggies here and not let them go bad, but I'm going to have to do it. I was reading on another website where one cancer Mom lightly cooks her veggies, and then purees them. She uses the puree in all sorts of different things from potatoes, to eggs. She said that a lot of times it either enhances the flavor or you don't even know it's there but you just have to experiment.

So, I have to take a minute to thank a few people. I want to thank Alisa for help with Tuli's medicine. She saved me from having to pay medicine co-pays this month. I would like to thank Mrs. Pam and her Pre-school class for the books and happy mail that they sent Tuli!! I would like to again thank Suzanne Mair (Sunny's Mom) for all the help that she gave us over the past few months. Thank you to them and thank you to everyone else who helps us in small ways and in big ways. We love you all!

It is quiet in the house. The babies are asleep and my three oldest are sleeping at various relatives houses. Lia is at Sela's, Tuli is at Grandma's, and Lani is at Dorothy's. It's so nice that they have cousins that are the same age, and sometimes want to stay away from home. Well, I don't alwasy let them as much as they want to, but it's nice every once in awhile.

Hope all of you enjoy your weekend.

Love,

Janelle & the Kinikini Klan

Wednesday, November 24, 2004 3:05 PM MT

Yesterday we headed up to Midway to take a ride on the Polar Express. The kids had a great time and were able to meet Santa Claus and have hot chocolate and cookies and a train ride. Heber Valley Railroad donated the tickets for our little family because we were unable to go with the Candlelighters.

After staying the night at my mom's, today we went over and saw Dr. Kelly Jarvis about rebuilding Tuli's immune system. He is a wholeistic doctor and is good friends with the Grandfather of the now famous (in Utah) Parker Jensen. Parker Jensen had Ewing's Sarcoma. It was a small little growth on the underside of his tongue. After it's removal the doctors wanted to do chemotherapy, but his parents and Parker didn't feel that it was in his best interest because his cancer was not very advanced. They took a different route and a year later Parker is still in remission. Parker Jensen's Grandfather is a wholeistic doctor as well and that is how they treated his Ewing Sarcoma. Kelly told me that he would never have counseled me to not get chemo for Tuli because his Sarcoma was so far advanced, but that we can do a lot to de-toxify him from the chemo and help rebuild his immune system. We talked about the NK cells that no one tells you about. These cells are naturally recurring cells in the body that naturally fight cancer. In someone who "gets" cancer, the NK cells are lower than the normal person. In other words they don't have the natural immunity to cancer that you and I do. He gave me several supplements to give Tuli including naturally forming Vitamin C (did you know that absorbic acid that everyone tells you is vitamin C feeds cancer cells?). A supplement that is basically like eating your greens (broccoli, spinach, flax seed oil, etc.). A bone stimulant to help the bone in his arm heal on it's own without surgery. Also, he wanted us to try and ultrasound Tuli's arm everyday, but since we don't live close and don't have an ultrasound machine we are going to have to settle for once a week. We also have several other supplements all designed to build his natural immunity and ability to fight off cancer in the future. Also, Tuli is supposed to have no sugar and no white flour. This is going to be a toughy. He is also supposed to have NO soda. No sugary drinks of any kind. I always knew these were bad for you, but still kept drinking them anyway. After all, they're convenient. No white bread, no candy, no lots of stuff. This is going to be a little trying, but maybe if not cold turkey, I think we can do a lot towards cutting back a lot of these foods that are terrible for you. Mainly sugar and white flour. Sugar and Vitamin C both feed cancer. Only the naturally occuring sugar like in an Orange is good for you. There is so much to do and I feel like I am finally doing something to "help" my son stay in remission. I think that diet has so much to do with cancer and it's cause. I think that our lifestyles have so much to do with this disease. If I can make these changes, even if they don't make a difference, and my son relapses, I'll know I did everything I could and I know that we're all going to be healthier. I know that helping our bodies can't hurt us. I have read about little kids who have relapsed. I have read about some doing chemo again and I have also read about some going to homeopathy. In a way, I'm doing both. I'm trying to prevent us ever getting to that point where we have to make the chemo decision again. It's one that I never want to have to make again in my life.

Well, we are going to be here at my mom's for Thanksgiving. I hope that all of your thanksgivings are wonderful. I have much to be grateful for this year. I have my family, my health. I have my husband, my mom and dad, my brothers and sisters, my children, and a son who is still alive and who is in remission. Back in March I didn't know if he would still be alive. For me, like many, I thought cancer was probably a death sentence. It's still scary. I still worry. But, my outlook is much better. Now even more so because I feel like I'm "doing" something.

HAPPY THANKSGIVING TO YOU ALL!!

Love,

Janelle & the Kinikini Klan

Friday, November 19, 2004 6:28 PM MT

Well, it didn't quite go as planned yesterday. We had to abide by the hospital schedule and didn't get out of there until 4:00p. This left just barely enough time for us to leave, pick up the other kids, get home, pick out clothes, get dressed, and load up in the car for Disney on Ice. We didn't even have time to eat before we went, and had to settle for popcorn and hotdogs. We got to see Devin and Kara and their Mom and Dad Alisa and Randy. We sat pretty close to each other, but not close enough to visit. The show was great, and the kids had a wonderful time. I spent most of the time in the bathroom (figures) with different children. It's either the bathroom or the concession stand, but I got to catch some of the good parts of the show.

Tuli is doing suprisingly well after this dose. This medicine usually really does a number on him, but he still has a pretty good appetite and has been making multiple members of the family scream throughout the day. Right now as I'm typing this he is begging me for some toy that I took away from him today because he was making his sister scream with it.

We have sickness going through the house again. Ben is still having problems with his feet and now he has a lot of pain in his knee. Lani and JJ both have a deep chest cough, and Arla had an upset stomach today and threw up. It never really ends, does it? Today is also Arla's birthday. She is 3 years old now. We are going to celebrate with a trip to her favorite place in the whole world...All-A-Dollar.

One more chemo to go! I can't believe that we're almost done! What a year!

Have a great weekend!

Love,

Janelle & the Kinikini Klan

Thursday, November 18, 2004 7:47 AM MT

I want to thank everyone who came on and gave such wonderful words of support. It's nice to know that people really do care. Even people I've never met before. I love you all so much for your support and love.

Well, the word on the street is we're supposed to get two units of blood today before they'll let us out of the looney bin! Grrrrr...I was kind of annoyed by this, because they didn't say anything about it before and I know it's important, but sheesh! Don't they know that people need to plan their lives somewhat? I have a doctor's appointment today and I have parent/teacher conference this afternoon all because I thought we would be out this morning and it's kind of annoying. Now if all goes well we will be out of here early afternoon. It's so frustrating sometimes.

I had Lia come home the other day and tell me that her teacher was having a fit because she missed a day of school last week. Well, Lia had told me she was sick (she really wasn't), but I let her stay home. This was the second time in a month but only 2 days in three months. Pretty dang good considering that I'm not even home half the time. I feel like telling her teacher to shove it. She knows that Tuli is ill. I told Lia to tell her that she's lucky that Lia is there at all and to do her job and teach her when she is there. Lia will probably not say this to her (in fact I'm about 99ure) so I think that I will probably say that to her today if she says anything about it to me at parent/teacher conference. The nerve of people sometimes. They are so caught up in their own little world that they can't see what's going on around them. Teachers need to teach, not tell people how to live their lives. Sometimes they think that they need to say more than they're supposed to. It's times like these that I'm tempted to take my kids out of the school system and home school them. I don't like the fact that educators seem to think they know what's better for my kids than I do. I think that the educational system is almost like Nazi Germay at this point. There is no freedom. They teach what they think your kids should learn, and they tell you when and where your children should be at all times. If you don't do these things, and send your child there, you go to jail. Doesn't this sound very SS to you?

Anyway, we should be out of here this afternoon and then we are going to Disney on Ice tonight. We got tickets through CandleLighers. We are going to kick it with Alisa, Devin and Family! That should be fun. Tuli got a big "Cookies by Design" basket from Janet and McKenna (in the guestbook) yesterday. He was so excited. Thank you Janet! What a sweet thing to do!

Much love to all of you!

Love,

Janelle

Monday, November 15, 2004 8:42 AM MT

Well, time marches on. We still have a broken arm, we still have no hair, we're still getting mouth sores, we're still fatigued, we are still quick to cry, we are still mad sometimes, we still joke around, we still get up in the morning (well, mid-morning), we still laugh, we still have a smile on our face, we still get down sometimes, we still stay strong, we still hope for the future, we still pray, we still have faith, we still love each other, and we still just try to muddle through.

Baptism update: Well, we wanted to do it this month. We had planned to do it Dec. 4th. But, now Tuli has a broken arm and I am not exactly sure if he will be able to get his arm wet. I'm thinking we should have done it the beginning of this month because he ended up being delayed for counts, something we didn't foresee. But, since we didn't get it done, this makes for an interesting development, so I am just going to say February to be safe. His arm is starting to feel like it is not even apart of him. It's like some appendage that doesn't always serve a great purpose. The doctor said that some day the arm will be very strong. Just as strong as his other arm. I'm assuming that this is at least several years. Oh, to put an eight year old in a padded room. You just can't do it. I'm afraid that this break has delayed the healing process once again. We are kind of in a "back to square one" kind of thing.

We are supposed to go in tomorrow for cisplatin. This drug over time tends to affect their hearing. We have been very fortunate thus far, because I know a lot of other Osteo kids who have lost a lot of hearing. Tuli has lost a little bit. Not enough to stop or lower the drug dose, but just enough to be noticeable during a hearing test. When I heard that he had lost a little of his high frequency hearing I told Ben "If he loses any more hearing I'm going to be so mad (understatement). This kid has lost enough. I don't want any more taken from him.". That's what cancer does. It just takes, and takes and takes. It sometimes gives, but always has a price. It doesn't make deals, it doesn't have mercy. Only God has mercy. Only God can heal. I'm praying and trying to keep faith that this final dose of cisplatin will leave my little boy alone. Please, let it just attack any cancer. Leave my little boy's ears, and heart, and mind, and everything else in between alone!

I can remember the first time we took Tuli in for chemo. I sat there in terror waiting for the minute that he would become violently ill. I thought that the minute they pumped that stuff into him, that he would start throwing up and wouldn't stop throwing up for the next year. This is somewhat true, but slightly less so. It doesn't happen right away. It's a process. It's like a hot tub. You don't just jump in. It's too hot. You go over and stick your toe in first. Then you somehow get up to your knees, then your waist, then you slowly lower down until you are sitting in the water. Some people even have to put their head in, but some people prefer to keep it out. Pretty soon you're there, and the water doesn't feel as hot as it did at first. You don't know why you were afraid of the hot water anyway. It's not too bad once you're used to it. You read the warning signs that are posted up on the wall. The list seems to go on and on and on. Are there really that many possible side-effects? But you know that they are probably not going to apply to you because you're different. Those warning signs are for other people. Those things don't happen to you. After awhile you start to feel tired and it's time to go and you get out of the water. Once you're out, you start to get cold. It was warm in the water, and now you're just out there. You don't know what is going to happen next. You feel like crap. The water did it's job to relax you, but you're not the same. You're never really the same.

I can remember that first time. It was RSV season, and everyone that came in Tuli's room (besides family) had to wear a mask. To "protect" Tuli they said. I felt like Tuli was the one that everyone was "protecting" themselves against. I felt like he was contagious or something. It was a weird thing to feel, logic telling me that I was just being silly and it really was to protect him. I felt like "cancer by association" or something since they had to wear a mask and I didn't. I don't know. Some weird mental thing with me. I tried not to be offended, knowing that again, they were right. They were trying to keep Tuli from getting sick.

So, you're sitting there. You order tons of food from the kitchen. Two hamburgers, order of fries, salad, ice cream, beef jerky, etc. You try to get your son to eat as much as he can. You feel like it's his last meal before the electric chair or something like that. I felt like it was the last bit of food he would eat for a year. They explain to you that he has to have a lot of fluid to protect his kidneys and you start forcing water down his throat. You don't realize that he could probably get all he needed and more from his IV. True, water the natural way is better anyway. But now, I don't bother. Try and get a chemo kid to drink when he is on IV fluids is like trying to get a fish to walk on dry land. You see, he wasn't a chemo kid yet. It takes awhile. You have to have that certain look. I can remember when Tuli started to take on that look. I cried myself to sleep that night. All I had known his whole life was this healthy, strong boy, with pink cheeks, and unmanageable hair that wanted to lay this way and that. I would try to wet it down and it just wouldn't lay down and Tuli wanted to wear his hair just like Uncle Muli..all slicked back. What I was starting to see was this gaunt, hairless, skinny, black circles under his eyes, holocaust kid. I say holocaust not to offend, because I know this is nothing compared to that, but the truth of the matter is these drugs do things to these kids that shouldn't have to happen to any child. Did you know that many of these drugs that they put in my child were used as biological warfare in WWII? How they ever went, bio-warfare...cancer, bio-warfare...cancer, is beyond me. You see, these drugs kill. They kill cancer, but they kill lots of other good things. They wreak havoc in their path. They can't decipher what is good stuff and what is bad.

So anyway, since we know this now that would explain the next part. I'm sitting there in terror. The nurse acts like it's no big deal, and I feel like saying "Don't you know that you're going to inject poison in my kid?". But, they've done it a thousand times, and they know it's supposed to help them so it's not a big deal anymore. They build up a callous. So, I'm waiting and pretty soon they say that it's time to start. They bring it in. The chemo is red. I didn't expect that. I never knew that the different things they pumped into you could be multi-colored. In fact down the road we would have red, yellow, white, and of course the "clear". I thought they were all clear. I think a clear chemo would have made me feel better, but it was not to be. They started me right out on the shocking red. Doubly worse is what the "nurse" comes in wearing. All remnants of the nurse had disappeared and in his place was a bio-engineer. They deck themselves out in an anti-splash, biohazard, bright aqua blue robe. They put a splash guard over their face, and they put on heavy duty rubber gloves (also aqua in case of a fall-out the rescuers can find them, I assume). Not the sweet thin latex gloves that you see when you get a blood draw, but the do-your-dishes kind of gloves that nothing seems to penetrate. I tried to tell myself that this was another precaution to protect Tuli against something, but then I realized that this was not the case. They are doing what I thought they were doing. They were protecting themselves from the chemo (chemo=chemical) that they were pumping into Tuli's vein hence they really were protecting themselves FROM Tuli and not the other way around. Hah! I was right! I must have had a look of shock, because in order to make me feel at "better" the nurse said, "All of this stuff I'm wearing is just in case it splashes.". Oh, well that made me feel better, didn't it make you feel better?

But like I said, things don't happen overnight. It took four days before I noticed the chemo (chemo=chemical) was doing something to my son. He just got more and more subdued and tired with each passing day. It was a hard thing to watch. It still is. The first time he threw up, I felt like the world had come to an end. I didn't want him to lose one pound. Now, it's part of the process. I just hope that he won't lose more than 40 before it's all over. Knowing that soon he will be able to eat well again is comforting. I'm sure he'll make up ground then. For now, we don't worry about it. It won't kill him, right? No, it won't. I'm not going to let it.

Well, thanks for taking this short little ride with me into the chemo-cancer world. As you can see, it's not all fun and games. It's life. Hard and not always fun.

Thanks for stopping by,

Love,

Janelle and the Kinikini Klan

Friday, November 12, 2004 12:09 PM MT

Well, we ended up being admitted because they advised us not to delay. The good news is my dad talked to the Heber Creeper and they have donated tickets for my whole family to go on November 23rd, so it all worked out. We are still here today. We thought we would be out this morning, but the metho level came back at .22. It has to be .10 or below. We are going to draw again this afternoon to see if we can get home today.

Well, that is the good news. The bad news is that on Friday Tuli was running through the house (I didn't know this until I heard him run through the kitchen). At which point I heard "slam, bam"... and the words that I have been dreading to hear for the last 5 months "ouch my arm!" and people crying. Tuli had run in to my soon to be 3 year old and fell on his arm. He gave her a bloody nose, and he was crying. He cried for a little while and then stopped and then later on he said that his arm still hurt. Well, being the almost too laid back person I am, I told him to wait a little while to see if it got any better. I figured he might have just kind of jarred it or bruised it. He went to bed that night and didn't really complain about it the next day. On Monday he went to his Grandma Kinikini's house and stayed the night. I could tell he was favoring his arm and he said that he couldn't really lift it, but I was thinking about his impending admission the next day and wondering when we were going to get to the doc. Since it wasn't overly painful, I didn't really think anything of it. On Tuesday I went and picked him up at his Grandma's and took him right to the hospital for admittance. In passing I mentioned the incident to the NP and took Tuli's shirt off and low and behold it was swollen!!! X-rays were taken. The NP said he wasn't sure if he could see anything, so it was sent to Dr. Scott (Tuli's Orthopedic). He called back yesterday and said that it is broken next to the screws in his humerus. I can't believe the pain tolerance on this kid. I mean, the arm is broken. He hardly ever complains. But again, the good news is that it will heal itself. He just has to have a brace put on his arm so that he can't move it for the next month or two, but no surgery! Am I relieved to hear that! Ooooooh! Eight year olds! Some day he is going to have to accept that he has some limitations now.

Well, like I said. Hopefully we are out of here this afternoon. Thanks everyone for stopping by!

Love,

Janelle and the Kinikini Klan

Monday, November 8, 2004 9:06 PM MT

Sorry that the updates have been a ways apart. We had a pretty busy weekend with the fundraiser and everything. It didn't turn out as well as we would have liked (there were three people), but Sunny worked her heart out. It was so great because of her. I didn't do anything. She did everything and did such a great job. I only felt bad there weren't more people because of how hard she worked. But, we've decided that we are going to to another one here in Salt Lake probably in January. All of you shouldn't just come out for Tuli, but to see what Sunny can do! She is AMAZING! I couldn't believe some of the things that she does with her scrapbooks! Thank you Sunny (and my bro John) so much! You are such a blessing in our lives!

On Saturday I also went and interviewed for JetBlue. If I get hired there I will be doing reservations from the comfort of my own home! Please, everyone pray that I get this position! It would be so wonderful to not have to leave the kids to go and work every day!

Tuli also got his counts today. They must have been high enough, because the nurse called and left a message saying that they want to admit tomorrow. We are going to ask them to postpone it so that Tuli can go to the Candlelighter's Christmas Party. It is a train ride on the Heber Creeper and they read the Polar Express and they get to meet Santa. We so want to go to that.

Hope you all have a great week! Thanks for all your words of comfort and prayers! We love you all so much! Tuli always says that he has "lots of friends on the internet".

Love,

Janelle & the Kinikini Klan

Friday, November 5, 2004 2:37 PM MT

Tuli has a hard time going to sleep. If I send him to his room to go to bed, he won't even lay down. He just sits there in the dark. Last night I finally went and laid with him to try and get him to go to sleep. It ended up being one of those talks that I love having with him. It kind of goes like this:

Tuli: "Mom, why is your nose pointy and my nose is flat?"

Me: "Because your daddy's nose is flat and you have his nose."

Tuli: "I don't want my hair to grow in blonde."

Me: "It won't be blonde, it will be pink...tee hee."

Tuli: "No it won't!"

Me: "No it won't, but it might be green."

Tuli: "Do some people's hair grow in green?"

Me: "No, I was just kidding."

Tuli: "Yeah, but your eyes grow in green...LOL."

Me: ...LOL.

This also leads to a whole discussion about DNA and why hair is brown, and why Tuli has big feet, etc. How some genes "beat up" the other genes because they're stronger (dominate) and that's why you look the way you do.

Tuli: "If I had had cancer a long time ago, would they have cut off my arm?"

Me: "Probably. You know, the chemo makes you really sick, but without the chemo the cancer wouldn't have gone away. The chemo saved your life. We don't always know what is going to happen, but we are thankful you have your arm and we just have to do the best we can with what we have."

Tuli: "If I had a time machine it wouldn't have mattered, because Jesus already had a plan about how my life would be, huh."

Me: "Yeah, Jesus and Heavenly Father know exactly what is going to happen. They know that everything is going to be alright no matter what."

Me: "Your scans came up clear, that means that you don't have any cancer in your body anymore."

Tuli: *smiles* "So, if the cancer is gone, why do I still have to get chemo?"

Me: "Because it's just to make sure that it's not in your blood or anything. They might have let some cells out when they took out the tumor."

Tuli: "Oh, I see. When I'm done with my chemo the cancer will stay away?"

Me: "I sure hope so hon. We're going to go get scans every few months or so to make sure."

These kind of conversations are the kinds of conversations that I never though I would have to have with one of my children, but I can't say that these conversations are bad. They give me a whole new insight into what kind of man my son is going to be. What kind of spirit he has inside of him. This past year has allowed me to grow more closer to Tuli than I ever thought I would be. For that I feel extremely lucky. I don't necessarily like the process which we had to go through for that to happen, but I am thankful for it all the same.

We did go to the Jazz game. Lani (my 6 year old) kept saying that we were "voting" for the Jazz. Heehee, I kept telling her that the election was over. We stayed through the 3rd quarter and Lani caught a free T-shirt, which really excited her. Tuli had a good time, but kept whining that he was hungry. I didn't have any money, so I felt bad, but he survived. We came home and ate oatmeal. That's the food of choice lately.

Well, thanks for stopping by! Hope everyone has a great weekend!

Remember:

Crop 4 Cancer, Nov. 6th at the Charleston Town Hall (south of Midway) 3454 West 3000 South, Charleston, UT. Registration $30.00 includes breakfast, lunch, dinner, make-and-takes, door prizes, and scrapbook workshops at 11:00a & 3:00p. 9:00a to 9:00p.

You can call me if you need directions:

801-467-3589 or 801-259-8638

Love,

Janelle & the Kinikini Klan

P.S. Counts are still pretty low. WBC is only 2.0 and ANC is only 500 (down from Monday). It's partly because I didn't have any money to get his neupogen shot so he missed it for two days. Hematocrit is also low at 26.5. They said that if he showed any signs of fatigue or dizziness this weekend to call the Oncologist on call and have him transfused at the emergency room. Something that I am dreading and don't want to happen. They just don't always know what to do with the Oncology patients in the emergency room. It's too complicated of a a situation. Hopefully counts will be up Monday for chemo next week. Actually we have mixed feelings about that because we want to go on the Candlelighter's Polar Express Christmas Party and it's on Thursday. If Tuli goes in for chemo we'll miss it. So, it's mixed feelings right now. Get done, or go to the party? We'll just see what fate has in store for us. See you all later!

Wednesday, November 3, 2004 6:30 PM MT

Well that election was drama! Whew, that's the longest we've ever had to wait to find out who won, thanks to Ohio! Angie, what took you so long? Heehee.

Tuli is feeling a little better today and the sores are on their way out. However he was at his lowest weight that he ever has been yesterday. The scale came up at 33.5 kilos which is about 73 or 74 pounds. Tuli now weighs less than Lani....LOL.

Tonight Ben's cousin Miles is trying to get us tickets to the Jazz game. Tuli is excited to go. Besides that, Tuli is working hard on homeschooling and his P/T, and of course beating Sly Cooper on the PS2...LOL.

Hope all of you are having a great week.

Remember:

Crop 4 Cancer Nov. 5, 2004 at Charleston Town Hall (just outside of Midway) 3454 West 3000 South, Charleston, UT. 9:00a to 9:00p. $30.00 registration, and you can pay at the door. It includes breakfast, lunch, dinner, make and takes, shopping, workshops at 11:00a and 3:00p, and lots of fun!

Thanks everyone!

Love,

Janelle & the Kinikini Klan

Tuesday, November 2, 2004 9:19 PM MT

Well, ANC was only 700, so no chemo this week. We still spent almost the entire day at the hospital getting scans and platelets. The scans came up relatively clear. There was just one little inconsistency on Tuli's CT chest scan. It showed some streaking in his right lung. Something the doctor said was normal and meant that he had probably had some allergies or a slight cold recently that made that part of the lung unable to get enough oxygen. It is something we are going to closely monitor in the next few months to make sure that it's nothing. Tuli will have more scans in late December or early January.

Other than that, all of the scans came up clear. No new growth. Bascially Tuli is cancer free right now. We hope and pray that things will stay this way, and that the future holds no chemo for our little boy. Right now we still have 3 treatments left until we're done. It seems like these last 5 treatments have just dragged. Tuli is just having a very hard time bouncing back from the treatments. The delays get longer and longer and I'm seriously wondering if we will be done before Christmas now. I want Christmas to be chemo free. We are going to have our hands full building up Tuli's immune system after this is all over. I have been talking to my mom and dad and we are going to look into holistic therapy for him with a chiropractor. This should include supplements and diet changes. I'm hoping this will give Tuli more of a fighting chance in staying in remission.

Well, did all of you vote? I did, and I'm nervous right now. Yes, I will admit I'm a diehard Bush fan. Sorry for all of you liberals out there. I hope that we can still be friends. Hahahahaha. That's all I'm going to say on that matter, because this isn't a political forum, it's about Tuli. So, let's not hold anything against each other and think about the children. Teehee. Anyway, hope all of you got out and voted and let your voice be heard!!

Reminder:

Tuli's Crop for Cancer is on November 5th at the Charleston Town Hall 3454 West 3000 South Charleston, UT. (just outside of Midway). Registration is $30.00 per person. This includes breakfast, lunch, and dinner and runs from 9:00a to 9:00p. Bring your pictures and come ready to have fun. You can pre-register by sending your registration to:

Sunny Kohler
PO Box 113
Midway, UT. 84049

Make Checks payable to:

Tuli's Cancer Fund

Please come if you can! Thanks.

Later! Thanks for stopping by!

Love,

Janelle & the Kinikini Klan

Sunday, October 31, 2004 6:09 PM MT

Tuli is starting to talk again, so I guess the sores are on their way out. That means his counts are probably going up, and we're probably going to be good to go for chemo on Tuesday.

Trick or treating was a blast. We had a lot of fun at the Tongan Ward trunk or treat. We ended up with about half a garbage bag full of candy, but for these hard core trick or treaters it just wasn't enough. After the party they had to go house to house trick or treating, and I just followed behind them in the van. About half way through, Tuli got to tired and was up on a lady's porch sitting on the railing. She said to him "What's your problem? You should be smiling." Lia said in her matter-of-fact way "He has cancer." It was actually funny the way that she said it. Sela (Ben's sister) and I were both in the van and we just cracked up laughing.

After that Tuli came and rode in the van with us, but still had a good time watching the kids go house to house. I'm hoping that next year will be a year that he can enjoy this time in his life. I'm so looking forward to that.

The other night Make-A-Wish came by the house and Tuli's wishes were #1-DisneyWorld and #2-to meet Orlando Bloom. Ben was not too excited about the second wish, but I'm about 99ure that it will be DisneyWorld. We look forward to the trip, it will be nice for our family after such a hard year.

Lots of love to you all.

Love,

Janelle & the Kinikini Klan

Saturday, October 30, 2004 2:11 PM MT

It was a cold, dark night. In the air there was a hint of danger. A feeling that floated like the snow that fell silently to the ground. I waited. Not knowing what was going to happen next. Would the enemy show itself, or hide out for hours, wearing me down slowly, slowly, until I screamed out from the sheer torment of not knowing?

OK, I'll quit with the drama. I'm practicing my novel-writing skills. What do you think?....OK, I didn't tell you that you had to be honest...LOL. You could've humored me for just a minute...LOL.

Seriously though, I overestimated the enemy by 10. There were only 20 kids here, but we still went hard! Here is the rundown:

5 rolls of toilet paper
8 large pizzas
4 liters of lemonade
2 liters of fruit punch
3 pitchers of Tang
6 dozen cupcakes
3 pounds bacon
2 loaves bread
3 dozen eggs
1 bloody nose

.......and a partridge in a pear treeeeeeeeee.

After waking up the next morning, we decided that we just hadn't had enough excitement and decided to drive up to Midway to see the family. We stopped in Park City to see Shark Tale and get something to eat, and when we came out of the movie it was a friggin' blizzard! Why didn't they tell me that it snowed in Utah?..LOL. My van was not sea worthy, so we parked it in Park City and we rode with my dad. It was kind of funny, because after we came up over the hill just past Park City the roads were clear the rest of the way. Oh well, better safe than sorry. We spent the night with Sunny and the kids and then came home yesterday just in time for the Halloween Party at our church.

JJ is sick. He was running a fever last night after we got home. Ben stayed with him and the kids and I went to the party. The party was fun, but Tuli has developed sores in his mouth again. Imagine, sores in the mouth and all the Halloween candy in the world. I cannot tell you had hard it is to see what this boy goes through. He has sores in his mouth, he has hardly eaten for over 48 hours, and he still wanted to go to the party. So, what do you think we did? We went. He asked for some water, and then started to cry because "It didn't fill him up." Well son, it is only water. I told him to drink some soup, and he just started to cry and shake his head. I know he wants to eat. I know he's hungry, but his body will not let him. It's so frustrating. Well, I went and got some pain killer. I set them both on the table and asked him if he wanted children's advil or the "hard stuff". He pointed to the oxycodon and then I knew he really was in pain. He hates that stuff. He said he was tired, so I took him out in the foyer and he fell asleep on the couch. Before he fell asleep he said "Mom, wake me up for the Trunk or Treat." Right then I wanted to just cry. I wanted to just sit there and sob. I thought it was so unfair. I know he's sick, but it makes it so much more obvious and hard to deal with when he is around a room full of very healthy children. They are all running around being children and he can't. When it was time for the Trunk or Treat, I saw him come out with all the kids and he went around and got candy. You could see it was wearing him down. When we got home, he went straight downstairs and fell on the bed. He hadn't even taken the time to take his coat and shoes off and he was still clutching his bag of candy. I started to take off his clothes. Part way through I woke him and he looked up at me and I said "Let's get your costume off." He helped me undress him and then threw his arms around me. We sat that way for the longest time. That's when I finally allowed myself to cry. I cried on his little shoulder.

Oh, these are the times when I shake my fist at the heavens. It's not because I don't have faith in the whole scheme of things, but it is just a "I know that you know what you're doing....but darn it...it seems so unfair sometimes. Please, just help me get through."

Tonight is more trunk or treating. We are going to the Tongan Ward. It is a blast because the kids get to go around and around until the candy is gone. It should do them good enough so that we don't have to do the house to house thing. I'm happy about that. A night out in the cold walking the streets sounds a lot like torture. Plus, I have a cold so I'm not sure if I could handle it.

Hope all of your Halloween is full of more Treats than Tricks!

Love,

Janelle and the Kinikini Klan

Monday, October 25, 2004 9:07 PM MT

Is everyone cold? I am!! It's freezing! Today we had the first snow of the year. Boy, how time flies. This summer is just a blurr for us. Where did it all go? Oh yeah...thanks for reminding me...it got sucked up in the cancer machine. Swooooooop!

We had a good weekend. On Saturday Lia, Tuli and Lani went to a Candlelighters costume party. For those of you who are not in on the lingo, the Candlelighters For Childhood Cancer is a support group for families who are battling or have battled cancer. They had a great time. After, we planned on going up to Midway to go to my cousin Kourtnie's baby shower, but the weather was so nasty that I didn't dare take my van with it's bare tires up the canyon. It just made me extremely nervous. Sorry Kourtnie!! We love you and wish you the best with your new little one!

We are preparing for an invasion. We are stocking supplies (halloween candy), and buying lots of toilet paper (tee hee). We are washing all of our bedding and making sure that all of the laundry is done. Wednesday is the day, and we are going to have about 30 kids in this house sleeping over. Oh, what did I get myself into? Since my kid's birthdays are all so close together I figure that I would rather do it once with everyone, rather than many different parties over time. I have found that this is the only way I survive. I take my poison all at once. I should either be lots of fun, or kill me. I may be taken captive, or tortured. Who knows what the enemy has in store? I'll keep you posted, so stay tuned and see if I survive!

Tuli is doing well. We had counts drawn today, but didn't receive the results yet. We should find out tomorrow, but I know they are low because he gets tired so easily. He eats a little here and there and I'm happy and content with that. I don't think I could get much more. He is doing the best he can.

Yesterday we had our Primary Program at church. All of the kids did wonderful. There was a little part in the middle where the kids and I got up together and spoke. The Primary had asked me to speak about extended families and how they help each other in times of need. Boy, do I know this. My extended family has been so wonderful, and so many people have reached out loving arms to help us! We love you all so much! Thank you!

Love,

Janelle

Friday, October 22, 2004 10:15 AM MT

I just wanted to give a cyber shout out to all of our caringbridge family! You know, you guys are awesome! Jo and Alisa, you are wonderful and everyone who signs Tuli's guestbook I appreciate you soooo much! It's nice to be loved!

Tuli's appetite which had picked up just a little bit before coming home from the hospital is zero again. He ate nothing yesterday but drank two glasses of milk which is better than nothing, but still frustrating. We beg, and plead, and beg some more but to no avail. I guess if he is not eating by the end of the day, then I will have to call the hospital and get some nausea meds for him. Ahhhh, this wonderful chemo weight loss plan. Some people would pay big money to loose this kind of weight.

Physical therapy is coming by at 11:00a. For some reason Tuli has two physical therapists. One at PCMC and one from IHC Home Health. I don't know what that is all about, but Oh well. We'll see what she says and does.

Have a great, if not cold, weekend! Brrrrr, it's freezing here.

Love,

Janelle & the Kinikini Klan

Wednesday, October 20, 2004 2:02 PM MT

There is a war going on. No, I don't mean in Iraq, although the implications are almost as important. My husband and I have varying opinions on how warm or cold the house should be. I keep turning on the heat and Ben keeps turning on the fans. Can someone tell my husband that it is October? I think he wants to freeze me so that I will stay young forever.. LOL!

We are home and are very happy to be here. Yesterday Tuli had to be pre-medicated with benedryl before getting a unit of blood because he always gets hives. Can you say "18 hrs!". Between the benedryl and cisplatin he was only awake between 11:00a and noon and back to bed until 7:00p. Needless to say we then had to have a movie marathon until 3:00a before he would go to sleep again. Thanks to his much needed rest, he was in a much better mood last night and we joked around and watched movies together. He had to have Mom sleep in his bed and I stayed there until about 5:00a before evacuating and sleeping on the fold out. This is a common occurance. He has a lot of nightmares especially in the hospital. I have to put my foot down when we get home and make him sleep by himself. He wants to sleep in Mom's room. Yes, regression is sometimes part of this whole process. But, really. Between Tuli wanting to sleep with me, and Arla or Lani wanting to sleep with me, and JJ does sleep with me, sometimes my bed looks more like a sardine can than a bed. Have you ever seen Charlie and the Chocolate Factory? You know how his family is all laying in the same bed. Some heads up and some heads down. LOL! That's the Kinikini's!! What a picture! Ben comes in and says "What the heck? Can I sleep with Mom?" LOL!

We have a bone scan scheduled on the 27th. Please give us your prayers that it will be clear and also his scans and x-rays that he will get on the 2nd of November! These are so important. They are going to determine if all of this hard work has paid off. Please let them be clear!! Besides the added stress of having more chemo, etc. it would mean that there is still cancer. And cancer is bad news (in case you didn't know, tee hee).

Also on the 27th we are having a mega sleepover with all the cousins to celebrate all of the fall birthdays in our family. It's going to be a big blast-o-rama and hopefully Tuli will remain out of the hospital and not end up getting any kind of fevers. Knock on wood!

Hope you all have a great week. We have all of our costumes for Halloween picked out and ready to go. Do you? I remember when Halloween used to be this exciting for me too, and it's so much fun to see my own children getting excited about their costumes and trick-or-treating and all of that stuff. It's amazing how time flies. I can remember one year that I wanted to be Annie the Orphan SO BAD!! My dad bought me one of those little plastic numbers. A red dress with the white belt and white collar and a happier child there never was! It was a great time! Pretty soon my kids will be getting costumes for their kids. Life is really too short sometimes.

Thanks to all of you for your love and support!

Love,

Janelle

Tuesday, October 19, 2004 3:43 PM MT

Well, Tuli was eating well and now after one dose of cisplatin we are back to eating... Nothing! Please Lord, just help me get through this week. It's so hard. He starts to feel wonderful and everything is great and then the hard stuff and he feels like crap. Right up until he got that stuff in his veins last night he was walking all over the halls and riding the exercise bike that they put out in the hallway and laughing and eating pistacios and everything. It stinks!

We should be home in the morning. Tuli is really not happy about being here now that he has gotten his chemo. He has been depressed and crying a lot today. He won't talk to anyone. Not even the people I know he likes. I will be so glad when my baby can be a normal kid again and do all the things he used to. I pray that will happen soon. We should be done with all the chemo by December. At that point we have follow-up scans to make sure there are no new "developements". If that comes up clear, then we will move to scans every month or so and then every 6 months and then every year. If we go five years without any growth, then there is a pretty good chance it will never come back. Talk about worrying. It just never ends.

I am looking into changing our diet. I don't mean just Tuli's diet, but my whole family. I've been reading some disturbing things about white sugar, white flour, chemical salt, corn syrup. These things are so terrible for us. In the next few months I'm going to be looking for some other "alternatives" to keeping Tuli in remission. I keep you guys updated.

Much love to you all. Thanks for stopping by!

Love,

Janelle & the Kinikini Klan

Thursday, October 14, 2004 11:56 AM MT

Last night Tuli came and poked out his belly and wanted me to pay close attention to the extra squishies that he has acquired this week. He is very proud of himself. He should be proud. He hasn't eaten this well in a long time. I wish I could be proud of the extra squishies that I have acquired... LOL! Tuli likes to punch me in the stomach there. I guess he thinks the extra padding softens the blow... Not!

Because of illness and counts Tuli has been off the hard chemo stuff for almost a month. It's good to know that he can bounce back so quickly. That will all change when we are admitted on Monday again for cisplatin... Yuck!

I'm glad for the chemo delay. I'm happy not to be driving the chemo monster this week. Yee haw!! Ride 'em cowboy!! There's so much I want to do. I have a little boy that feels half normal and time. What ever will I do with myself? I'm giddy just thinking about it!!

Anyway, the great news!!

Tuli has no sores! He had a few in his throat, and usually we have a big blow-up in his mouth that is excruciatingly painful. But, nothing this week. Throat sores are gone. I have been throwing everything at him, so I don't know exactly what worked but I think the Xango had a lot to do with it. Every time he drank it, he got a little better. Thank you so much Suzanne! She has sent us a few cases at great cost to herself! We love you!

Time to go work on the house. I have cupboards to strip!!

Love you all,

Janelle & the Kinikini Klan

Monday, October 11, 2004 4:40 PM MT

WELCOME EVERYONE! WE ARE HOME FOR NOW AND ARE ENJOYING IT.

We had a great weekend that included some times at home, church on Sunday, and visiting up in Midway with the Kohlers in the afternoon. We went and saw Grandma and Grandpa Kohler, Grandma Lucile, Joel and Luann, and Sunny and all of the cousins. The kids had a good time. Tonight for family night we are going to hop on tracks and take the train up to Temple Square and do some sight seeing.

Tuli has a few sores in his throat, but I am using everything in my power to keep them to a minimum. We are giving him glutamine & lysine. We are also cleaning his mouth several times a day and making him swish with the peridex mouthwash. We are also having him drink Xango several times a day hoping that will help. We hope that all of this will give him a fighting chance this time around and we won't have any hospitalizations!!!

We were supposed to go in for chemo today, but told the hospital that we just couldn't handle it right now and "Could we please come in tomorrow?". They said that was fine, so we went and got counts today, but they came back and Tuli's WBC were 1.1 and his ANC was on 600. His ANC has to be 750 to do chemo, so here we are. We probably won't be admitted again until Thursday. I have mixed feelings. I'm glad to be home for a few more days, but I also want to get all of this over with! This will probably push us into Thanksgiving. Oh well, I may as well go with the flow!! Like I've said, we'll be done for sure by Christmas. What a great Christmas we are going to have!

Thanks for stopping by!

Love ya,

Janelle and the Kinikini Klan

Monday, October 11, 2004 4:40 PM MT

WELCOME EVERYONE! WE ARE HOME FOR NOW AND ARE ENJOYING IT.

We had a great weekend that included some times at home, church on Sunday, and visiting up in Midway with the Kohlers in the afternoon. We went and saw Grandma and Grandpa Kohler, Grandma Lucile, Joel and Luann, and Sunny and all of the cousins. The kids had a good time. Tonight for family night we are going to hop on tracks and take the train up to Temple Square and do some sight seeing.

Tuli has a few sores in his throat, but I am using everything in my power to keep them to a minimum. We are giving him glutamine & lysine. We are also cleaning his mouth several times a day and making him swish with the peridex mouthwash. We are also having him drink Xango several times a day hoping that will help. We hope that all of this will give him a fighting chance this time around and we won't have any hospitalizations!!!

We were supposed to go in for chemo today, but told the hospital that we just couldn't handle it right now and "Could we please come in tomorrow?". They said that was fine, so we went and got counts today, but they came back and Tuli's WBC were 1.1 and his ANC was on 600. His ANC has to be 750 to do chemo, so here we are. We probably won't be admitted again until Thursday. I have mixed feelings. I'm glad to be home for a few more days, but I also want to get all of this over with! This will probably push us into Thanksgiving. Oh well, I may as well go with the flow!! Like I've said, we'll be done for sure by Christmas. What a great Christmas we are going to have!

Thanks for stopping by!

Love ya,

Janelle and the Kinikini Klan

Thursday, October 7, 2004 12:00 PM MT

It's like the game "She loves me, she loves me not.", except it's called "You can go home, you can't go home.".

This morning his methotrexate level was .19. Tuli can go home when his level is below .10. Sometimes they will let him go him when his level is .12 or.11 and they give him home fluids for a couple of days just to make sure they he gets that nasty stuff out of his body. It can't sit in there or it will have a field day with his kidneys.

NEW UPDATE!! WE ARE HOME NOW! TULI HAD A BLOOD DRAW AT 2:00P THIS AFTERNOON AND IT CAME BACK AT .10. JUST BARELY LOW ENOUGH TO GO HOME!!

Grandma and Grandpa Kohler came last night and gave Tuli another game for his PS2. He was so excited and stayed up and played it until 1:00a. He was still sleeping when I left the room at 11:00a to go get something to eat.

Ben's nephew Ti and his wife Ni'i and their baby Liutai came by the other night and gave Tuli a remote control car. He has been driving it up and down the hallways attacking doctors and nurses shoes and seeing how far it will go before it's out of range. Hence how our days pass here.

During this same visit from Ti we met a friend of theirs who has a very sick little girl here. She has a disease that attacks her own body as if it were a sickness. It attacks, organs, skin, and everything in between. They don't really know what to do for her. The family is very distraught. They are searching for some answers about why these things happen. Why it happens to one so young and why she has to suffer. Boy, I understand how they feel, but I also understand that the trials we go through in life are for a reason. They are from a loving Father in Heaven who wants us to learn and grow and trust in him. How thankful I am to have this knowledge and to know that God loves me and wants what is best for me and my little family. The gosple has taught me these things. How grateful I am for it's direction and light especially in these last few months. The Church of Jesus Christ of Latter-Day Saints is true! The gosple is true! This has become even more evident to me through all that is happened. If you are searching for something to hold on to, the gosple is a solid grip in the darkness. Of this I testify!!

Thank you for stopping by. May all of you find that light and truth you are searching for.

Love,

Janelle and the Kinikini Klan

Tuesday, October 5, 2004 6:16 PM MT

For everyone who wanted to know, Tuli got "Jet Li, Rise to Honor" for his PS2. This was not Mom's first choice, but Tuli really wanted it and it's karate but not overly bloody or violent. Now he wants a GameCube. Whew, isn't two game systems enough?

We are in the hospital now getting chemo. We are waiting for Tuli to clear his methotrexate from his system. We should be out of here on Thursday. Tuli also started his physical therapy today and the therapist said that his movement was wonderful and she was going to have to think about what she could improve on. That is good news. Tuli wants to play football next year, but I'm thinking that his arm will break too easily. I don't know. Thats going to be for his orthopedic doctor to decide. I don't want to have to go through a surgery involving repair of the arm.

I have been thinking about Tuli's arm a lot and wondering if we could have done more. I don't know. Did we pick the right doctor? Did we make the right choices? Should I have questioned more, resesarched more, traveled to some far away hospital and met with the best orthopedic doctor in the country. There's no changing it now, but maybe in the future we can have more surgeries that give him more. I understand that we should be grateful that he has his arm, but I want him to do everything in life that he wants to do. I really like his doctor, and I think he is good. I just think that when you have to make a decision of this magnitude that you are always going to question yourself. You're always going to wonder if you could have done something more or better. I think that maybe in 20 years there might be more for him, and they can make changes. He still has his arm there. We can still do things with it.

Anyway, I was going to go on about that, but I realize that I'm just rambling and need to give it a rest. It's not everyday that you have to make a decision like this. It's not like trying to decide if you want to wear the blue shirt or the white shirt. You're picking a quality of life. You're picking... I want to say "a level of happiness.". That's a lot of pressure to put on someone. I just hope I made the right choice. I hear people talk about other orthopedic doctors in Salt Lake and say how good they are, and I want to say "What about Tuli's doctor? What do you think of him?" But of course, when I asked people before the surgery they said he was one of the best.

Well, this whole thing is giving me another tension headache. These have been happening a lot lately. The soreness in my neck and my jaw are awful. But it's really nothing compared to what Tuli and even Ben are going through so I'm not going to complain.

Hope this entry meets you all well and happy.

Love,

Janelle and the Kinikini Klan

Monday, October 4, 2004 8:40 AM MT

I JUST WANTED TO THANK EVERYONE WHO CAME AND WISHED TULI A HAPPY BIRTHDAY! THANKS TO ALL OF OUR CARINGBRIDGE FRIENDS!!

It was a good birthday. We had family over and cooked lots of good food. Long rice, potato salad, pork roast, steeped veggies, curry chicken, rice, cupcakes, ice cream.... Ummmmm! We had a nice little dinner. It was last minute, but turned out great. Tuli got a video game for his birthday... What else? We also went to the circus on Thursday. That was lots of fun.

We had a good week or so since Tuli got out of the hospital from his infection. We had a few days in the clinic last week, but nothing major (isn't it funny how 2 units of blood is nothing major at this point in our lives). It seems like we've had all the time in the world. Now we go back to the hospital today for more chemo. We still have 5 treatments left. I have been saying that for a few weeks, and because of Tuli's illness we haven't made any headway. It's good to be going back just for that reason, to know that we are moving forward again and will be done soon.

I'm thinking of putting off the fundraiser for the beginning of next year. I know that we will be done with treatment, but those bills will still be there. And, we are really getting to the busy time of year where everyone is getting ready for the holidays and Christmas and everything. It just gets kind of hectic. What do you think?

Anyway, again thanks to everyone who came and gave birthday wishes! We love all of you so much and appreciate your love and support!

Love,

Janelle and the Kinikini Klan

Wednesday, September 29, 2004 11:14 AM MT

Well, I just looked up at a little wooden calender that I have where you can change the little characters to match the time of year. The character on it right now is a bunny rabbit. It seems like time stopped around that time of year. It's almost midnight and Cinderella needs to get home so maybe it's about time I change it to a pumpkin?

All and all it has been a pretty good week so far. Monday and Tuesday were clinic visits with Tues being a marathon 5 or 6 hrs. Tuli had to get 2 units of blood. He is not scheduled for anything until Monday when he will start up on chemo again. We are excited to have the rest of the week off and get to enjoy each other as a family again without the hospital and chemo stress.

The clinic was kind of cool in a way, because I got to see a lot of the cancer kids and parents that I know. I got to meet Alisa Ross and Devin and Randy. She had noticed me getting a Nintendo for Tuli and asked if it was me. She said my hair wasn't as bad as I had said. Well, thanks Alisa. The funny thing is I needed a shower so bad, and I looked like death warmed over, but you know that is how I look a lot lately. LOL! I also saw another boy named Mitchell Parker who goes to Tuli's school. His mom is Tuli's P.E. teacher. It's interesting to note that there are about 6 kids recorded in Highland Park Elementary over the last couple of years who have had cancer. Is it something in the water? I don't know. Weird. Mitchell came in and played X box with Tuli for awhile. It was good to see these people. When your admitted to the hospital, it's kind of a luck of the draw if you see one of your cancer parent friends. Everyone is just in their little room and only come out to get food and movies. Sometimes you're a little isolated. Clinic is like everyone is just up and walking around and the doors to the rooms are usually open. It's a different atmosphere.

Tuli's birthday is Sunday, Oct. 3rd. He will be eight years old. Never in our wildest or worst nightmare did we think this was how we would be celebrating Tuli's baptism. Needless to say, we have scheduled his baptism for Dec. 4th because baptism in Oct. or Nov. might prove to be too complicated. Tuli could be sick, or have low counts, or be just getting off chemo, or be hospitalized at a moments notice. We never know what is going to happen, so even though Dec. is a busy month for all, that is the month that his baptism will be. Tuli wants to be baptised immediately, but I explained to him why it might be better to wait. I think he's OK with it.

Hope all of you are doing well. There is not much else to report, and for that we are grateful. School for Lani and Lia, Dad at work, Mommy home with Arla, JJ, and Tuli, and all of us enjoying a little bit or normalcy for the time being (if you can call 5 different drugs, and TPN that I'm trying to finish up over a 15hr infusion today normal). Only 5 treatments left!!

Love,

Janelle & the Kinikini Klan

Sunday, September 26, 2004 8:56 PM MT

I was standing in line at the local buffet, when this old lady came in and got in line behind us. She asked Tuli to give up his seat, which he gladly did (I was actually thinking that of all the people to give up his seat, she shouldn't be asking him. I mean, couldn't she see that he was sick?). I was not in the best state of mind and feeling sorry for myself and didn't have the spirit of Christ in me. Immediately I started thinking "What is my problem? I'm so consumed with my own problems that I can't even think of others?" I kept remembering wise counsel that said "When you're feeling sorry for yourself and have the world on your shoulders, do something good for someone else.". I could tell this lady couldn't stand for a long period of time, so I told her that she could sit there and that we would wait in line for her and save her place until it was time to pay. There was also this little voice that kept saying "Pay for her to eat.". By the time I got up to the register, I had talked myself out of paying for her, I mean we're broke. We've got our own problems, right? I'm sure that she has family to take care of her, or something. My husband had been talking to her through the line, and when it came time to pay he said "Three adults." (There was only Ben and me.). I knew then that it was the spirit speaking to me and that he had been speaking to Ben also. I paid for the kind lady, and we invited her to sit at our table.

Upon arriving at our table, Ben did not sit her at the end. Oh no, Grandma Edna(The kids had automatically dubbed her their Grandma) sat right next to Ben and I and we proceeded to visit. We learned about why she had lived so many places. Why she was a single Mom for 40 years. Why she moved to Salt Lake. What religion she was. Why she was practically strangers with her three children and eight grandchildren. I realized that my burden was becomming lighter, and so was hers. Grandma Edna told us that she had not been to that buffet in 5 years, because it was so far on her little scooter. She said that she just felt like she should come today. She told us that she felt like our little family was the reason. I told her that I felt like she was a blessing for us. Not the other way around.

After we were all full of stories and food, we went outside and each of the kids got to drive Grandma's scooter. What a treat! What a great blessing this was, to sit and visit with this special lady! God brings people to people. This is what Grandma Edna said. Nothing is by accident. I believe that with all my heart.

On another note. Yesterday we went to Lagoon again. It was great fun. We spent the day riding rides, and eating out of the cooler in the van. We had a huge group. My kids Lia, Lani, Tuli, Arla, JJ & Aunt Oti. We also took a bunch of the cousins including Le'o, Peta, Mafi, Valeti & Tuli Sela. We also met up with my sister Julie, her husband Reed, and her kids Clarissa, Rachel, and Robert. Later we ran in to Tuli's uncle Muli, cousin Charlie, and his aunts Hola and Mea. It was a mass of humanity!! It was lots of fun, and Tuli had a great day.

Tuli was on TPN, but he has been eating so well that I am not going to give him his last two days worth. His counts started to come up when we left the hospital on Thursday, and when that happens I know those sores are going to go away quick.

Thanks everyone for everything. This whole experience has really shown me how kind people can be. I appreciate all of you so much!

Love,

Janelle & the Kinikini Klan

Friday, September 24, 2004 8:37 AM MT

Hey Everyone!

I just want to say a quick thanks to everyone who was such a great support this week. Thanks JO, and thanks Alisa for all that you guys have done for us. It was so great to meet you Jo, and talk to Alisa on the phone. I sure hope that Devin starts feeling better. You guys don't need to deal with any more. Jo brought Tuli a toy and me some much needed reading material (and chocolate) and Alisa, Devin, and Kara sent Tuli candy and a balloon. Suzanne (Sunny's mom) sent money and some more Xango!! Hoorah! I think that's why he got the sores so bad, is because I had run out. Hopefully this batch will help him be able to counteract it a little better next time. Ben also takes the Xango. He says it helps his joints feel better. Anyway, thanks to everyone!

Things got better after my last entry. We got the pain under control, and the rest of the next day Tuli didn't even need any pain meds. His counts started coming up very quickly and we were out of the hospital by 1:00p on Thursday. So, we are home now, and it feels wonderful! Tuli's not mad anymore. I think a lot of that is pain, but I think the pain just brings out anger that he already has inside and he just can't keep it in anymore. His mouth is still a little sore, and even though he can force down some meds, he is still on TPN at home because he can't eat yet.

On Saturday we are planning on going to Lagoon. For those of you who don't know, that is a local amusement park. We have bounce back tickets from when my mom and dad took us, so it's only going to be $5 a person, or something like that. We couldn't pass it up. Tuli needs something. We are so excited to go. Last night we kept talking about it, and it's so good to see Tuli's dimples come out on his face.

Tuli has also started up tutoring again with his first grade teacher. This has made everything so much easier, because he loves her and know her so well. Thanks Kate!! She even has her students call her Kate. How cool is that?

We also had some drama on Wed. with Lani. The school called Ben and told him that some little punk had been touching Lani on her chest and saying some not so appropriate things about her womanly parts (we will keep it edited in case any under 18's are reading). She was such a smart girl about it and went and told the teacher. Well, needless to say, Ben was ready to find out where the kid lived and go "talk to" his parents and possibly fire bomb their house if it happened again. LOL. I wish I could say I was kidding, but well, for those of you who know Ben, you know that he's a great guy.

Anyway, we told the school in no uncertain terms that it better not happen again. In a way, I feel sorry for the kid and his parents, but I'm not going to sacrifice my daughter's welfare for the sake of some kid who likes to touch girls. There is a sexual harassment code at the school that is no tolerance so the kid was kicked out of the school. Well, like I said, part of me felt sorry for them, but the bigger part of me was relieved. I wanted to almost laugh at the whole situation because here I am sitting at the hospital with my very sick child and I send my girls to school and they get molested! Oooooo, it would be funny if it didn't mean harm for Lani. Poor kid. It didn't affect her or anything. She knows she didn't do anything wrong. We just told her that if it every happens again that she better punch (no I think Ben used the word "pummel") the kid in the nose and then go and tell the teacher. Hehehehe.

Well, I think that in terms of things that can happen, we've encountered probably a lot of them through this year. If someone had told me what was going to happen on New Year's Eve 2003, I might have turned tail and run. Isn't that the jewel of not knowing what is going to happen? You don't have to worry about it, because you don't know it's there yet. Thank goodness. I think that the anticipation would be worse than the actual.

We only have 5 treatments left! 3 metho and 2 cisplatin. The metho stays are about 4 days and the cisplatin are two days. 16 days in the hospital doesn't sound so long anymore. It sounds like a snap of the fingers. Yehaw!!

Thanks for stopping. Love you all!

Love,

Janelle

Wednesday, September 22, 2004 2:18 PM CDT

Yesterday had a some wonderful highs and a few bad lows. The day started out pretty good. The nurses came in and "woke him up" to take pain medication. Now, I've never understood this practice. I've also never understood why on earth you are going to force a kid who has extremely painful mucositis to take oral medications. I hadn't been really strict about changing to IV meds because they kept telling us they would keep us longer if we had to go on IV because then they would have to wean Tuli off of it. I think it's a money issue. IV meds cost more. But anyway, I got him to take the first dose at 8:30a. Around lunch time we got a visit from an internet friend, Parker's mom Jo. It was so wonderful to meet her and talk and laugh and cry. I feel like I've known her for a long time. It's amazing really the people that this experience has allowed me to meet. Even though cancer is horrible, I'm at least grateful for that. I'm grateful for all of the wonderful, caring friends we have made. Thank you so much Jo. You are truly an angel.

At 2:00p I had to pay him a dollar to take the med. At 3:30 Tuli had to take his antibiotics and I paid him another dollar. He did it, but then he screamed and cried bloody murder for the next hour. I finally called the nurse in and said "He's been like this for an hour. Even if he can take his meds orally, I don't want to do it anymore. If it's not something physical, it's definitely mental now, and that can be just as bad." Tuli just had a complete breakdown. I thought he was going to hit me. He was screaming and yelling at me and anytime someone asked him something he would say "Stop talking to me!" Kicking, screaming, flailing of the arms. The anger and frustration is just hard. The nurse went out and thankfully switched everything to IV meds. This worked pretty well. At 5:00p they gave him platelets. He has to be pre-medicated with benedryl because he gets hives when he gets platelets. The benedryl knocked him out until 8:30p. At which time he woke up in pain. More morphine. An hour or two, more pain and more morphine. 11:30p more morphine and back to sleep. 1:30a up again in serious pain. I just started to cry and said "I can't stand it anymore!" The nurse came in and I told her that things were just not working. We had to do something about his pain. It just wasn't acceptable. So, she said that she would up the dose. Tuli wasn't tired anymore and stayed up until 4:00a watching a DVD. Then he finally went to sleep, and thankfully no more pain! The nurse took care of it after that, and I was so grateful he finally wasn't suffering anymore.

I know they have to start out at the lowest dose of pain med, but sheesh it's frustrating! It's like you have to beg to get the proper amount of drug. It's not like my son is addicted. When you ask him if he wants medicine he gets very angry and screams "No!". We've been in here five days and we finally have him comfortable? I could keep him at home and have him suffer through it. That's not why I'm here. On top of all of that, they are having a problem drawing blood from his port. They want to do another dye study, but I don't think it's the port. They keep saying that the blood clots almost immediately. Hello, I said they gave him platelets yesterday. When they gave him the platelets he was 27. Usually they give platelets between 19 and 25. Some resident ordered them. They weren't really necessary, but now I think he has too many platelets and it's clotting very quickly. Doesn't anyone read the chart? At parent break yesterday, we were saying that probably the biggest thing that annoys oncology patients is we never see the same doc on a consistent basis. Because of that, things in general aren't consistent. It's impossible for every doctor to understand every case inside and out with all of the daily developments. Because of this, you can't let your guard down for even one minute. You have to know exactly what is going on with your child every second. You can't trust the docs to pick up on it. Alisa, you know what I'm talking about. We should know what is going on as parents, but the docs should know at least the ame amount or more. That's just my opinion.

Well, like I said ups and downs. Tuli did get up and is humming and turned on the Nintendo 64. This is a good sign. He is getting back to the Tuli that we all know and love. What a relief! We better be out of here by tomorrow, or I'm going to be mad! He hasn't had a fever in over 24hrs, but now he is on IV meds and we have to get him back off. Also, they're worried about the staph in the blood and want to make sure it's under control. Please, I want to go home now! Ben said that last night the baby cried and cried until Ben picked him up and cuddled him for a long time. I think even he, at the age of 1, is so sick of everything. Ben said he kept looking up at him to make sure it was still his daddy. We are gone way too much.

Lots of love to you all!

Love,

Janelle & the Kinikini Klan

Tuesday, September 21, 2004 3:05 AM CDT

OK, I've had a lot of people want to see the hair, but the bad news is I got so sick of looking at it that first day that I took some hospital scissors and chopped off the back myself! I had the nurses even it up. It actually does look a little better, but today Lia said "When you had me, you got that haircut. When you had Tuli, you got that haircut. When you had Lani, you got that haircut. When you had Arla, (you guessed it) you got that haircut." and "You just had JJ, and you got that haircut.". I said, "What are you saying? That I've had this haircut too long, and I need a change?" She said "Yeah.". I never thought I would see the day when I was out of the times and my 9 year old would be telling me what is stylish. Haha, too funny.

Tuli is still in the hospital. I left last night because they were going to come and lay the carpet today. I was soooooo sick of not having carpet, that I said "I don't care if we can't afford it. We are getting carpet for winter." The house was so cold and uninviting I couldn't stand it anymore. Auntie Mea stayed with Tuli today while I took care of that. It looks nice, but it took the carpet layer 7 hrs to do it. Sheesh! When I came back tonight, I could tell Tuli had made another turn for the worst. He was feeling so awful. I had called the nutritionist and got them to give him a TPN because he had eaten nothing in 4 days. His mucositis is out of control and very painful. And, the cultures came back and he has a staph infection in his blood. On top of that, he has diarrhea and the nurse thinks that's another viral infection besides everything else that's going on. Lovely. I don't know when we're getting out of here. We had planned on the amusement park on saturday, but I don't know if that's going to happen. And, if that doesn't happen Tuli is going to be crushed. He couldn't go to his school Carnival last week because of his admittance and he cried and cried. Lia, the sweet girl that she is won him a Hulk poster that we hung in his room. She wouldn't leave the carnival until she had something for Tuli. She's that way. Today we went over to Wal-Mart to get a few things. When we first walked in she asked me for quarters. I said I didn't have any. At the checkout she took out a handfull of pennies, dimes, and nickles, and asked the cashier for four quarters. When we were walking out she ran on ahead to the vending machines. I figured she just wanted some candy. She came back with a little white cup in her hand that was no bigger than a ping pong ball. She said it was for Tuli. She had been finding coins around the house for weeks, and took her dollar and spent it on something she thought Tuli would like. She said "I hope he likes it. I tried to get the one with Ron and Rufus on it, but I got KimPossible instead." I told her that he would probably love it and that she was such a sweet little girl.

Hope we get out of here soon. Thanks to everyone who have stopped by and left messages, and even those of you who haven't (I know you're there)! I appreciate it.

Love ya,

Janelle & the Kinikini Klan

Saturday, September 18, 2004 5:45 PM MT

Today Tuli wanted some strawberry Nesquick, so I left for a few minutes to get some. I really needed a haircut, so I stopped at Great Clips because it's right by the store. Can you say mullet? I am not happy to say that now I look like Billy Ray Cyrus. I didn't realize that it was still that long in the back. I would have told her take of another inch or two. Are we living in Utah? I'm going to have to have my sister Julie fix it.

Like I said, on thursday we went and got blood drawn. It came back ANC=114, WBC=0.4, RBC (Hematocrit)=19, platelets=80. They asked us to come in for a transfusion on Friday. It was so hard to get Tuli out of bed. He was so worn out. He had hardly eaten for a few days. He as weak, tired, and overall crummy. I woke him up and accessed his port so we wouldn't have to wait at the hospital for them to do it (that can take up to an hour and a half). I took him and the babies (Arla & J) up to the hospital. I didn't want to drop them off at Grandma's because I missed them so much. We got there at 9:30a. Tuli could barely walk in to the hospital and had to stop and rest 3 times. They put us in a room, and came in a drew Tuli for a blood count. Then we waited. I took the babies down to the cafeteria and we ate, and Tuli just stayed there and slept. We came back at 11:00 and still no blood. We waited some more, and finally the blood came in. It took 2 1/2 hours to get it there. Then, they took Tuli's temperature and viola... A fever! Well, that didn't delay the transfusion, just made it go longer. It took 4 hours to transfuse. During which time, I debated about taking the babies to Grandma's and finally just decided to take them outside to play. When we were done with lunch and went back, the babies fell asleep on my lap and I sat there and counted down the volume to be infused from 250ML to zero and wanted to shout halelujia! But... There's a catch. Isn't there always? The fever that he was running before the transfusion was still there and had even gone up a few points. Well, that meant admittance time. And to think that I promised Tuli that we wouldn't sleep here. LOL! Oh yes... During his clinic visit we actually saw 3 different doctors. I almost went in to shock! I almost forgot, because I'm still in denial. I thought they were cardboard cutouts, hahahaha! One of them was a doc that was on call one weekend when I told him on the phone that I was so sick of doctors and hospitals that I could puke! Hehehehe. It was funny to see him face to face. He was probably thinking "This lady doesn't look as crazy as I thought she was."

Well, we got up to our favorite place... You guess it!... The 4th floor at about 5:30p. So, here we are playing a waiting game hoping that his fever will go down so we can go home. It's like being in prison waiting for parole. He starts metho on Tuesday again, and I'm thinking that we will either never get home before then, or we'll get home for like 24 or 48 hrs. Just enough time to start to feel free and then they slap the cuffs on again.

Needless to say, this kind of puts a kink in my fundraising efforts. I will try to do what I can from the hospital, but my biggest problem right now is finding a hall. Does anyone know a hall that is cheap or that would be willing to donate the time for a good cause? If worse comes to worse, we will have a little fundraising party in someone's back yard. We will have plates of food or something.

Again, if you would like to help with fundraising, let me know.

Love ya'll

Janelle & the Kinikini Klan

Thursday, September 16, 2004 5:22 PM CDT

Well, we've had an alright couple of days. Tuli went to school on Wednesday, green mask and all, but overall has not really felt his best. He was so worn out by the end of the school day that he slept for 3 1/2 hrs in the afternoon. Today we went up to a park and ate with Ben on his lunchbreak, and Tuli blacked out for a minute. He didn't fall over because I ran over to him and caught him in time. He just isn't eating anything because his nausea has really gotten to him.

We went over this morning to get his blood drawn, and he was so angry. He kept yelling at me. Finally I was like "What is your problem?" I said, "Are you mad?" He said "No.". I said "If you're mad, it's OK to be mad. You can shout and scream and say you're mad because I know it's not fair!" Then I said, "Do you think it's fair?" Tuli said "No!". I said "Good. Yell that you're mad." And I yelled and shouted, and beat on the steering wheel just to let him know that it was OK. He still didn't scream, but was able to release a little bit of the anger that was there and voice that it wasn't fair! He said "My body is just acting weird." I told him that I understood and that the chemo stuff was nasty and it wasn't fair! After that, he smiled. He felt much better. I hope I'm doing what I need to for him. I want him to know that it's OK to let your feelings out. You can scream and yell and cry, and that doesn't mean that you aren't strong. You are strong! He is the strongest kid I know.

Well, the fundraiser is coming along slowly. It looks like I will be making a date for a fundraising dance in October. We will be having a dance/raffle. I will give more details on here next week. I am going to try and do it for Oct. 27, because it is the night before UEA, and also a week that Tuli is off of chemo (pending any delays). If not the 27th, then probably a friday or saturday night the first 3 weeks of October. I would like him to be there for his fundraiser, but if he can't be then that is how it will go. I just can't plan something far in advance that centers around him. The chemo schedule is just too crazy. I will also be setting up an account for Tuli, and will post that info on here at a later date as well.

If anyone would like to help distribute flyers next week to businesses, and ask for product/services donations for the raffle, please let me know. This would be relatively simple, because the information would be on the flyer. You would just have to go in and give it to the manager and answer any questions they might have, and also collect any donations that the businesses would like to donate. If the business cannot donate immediately, and would like to think about it, you can leave the flyer and it has information about where to send donations. Also, if anyone has any ideas for advertising, please let me know. We were going to distribute flyers, and hang flyers in businesses around town. If you have other ideas, I would love to hear them. Also, some of you know a lot more about fundraising than I do. If you have any insight, please call me!! 801-467-3589 or 801-259-8638. If I am in the hospital you can call 801-588-4400 and ask for Tuli's room.

Thanks to Cindy and Tiffani for helping me get motivated to do the fundraiser. I need someone to push me to do it. It's hard to ask for money. But, I just wanted to say "thanks". Thanks for all your help.

Love,

Janelle & the Kinikini Klan

Monday, September 13, 2004 4:11 PM MT

WHAT A BEAUTIFUL DAY!!!

We got out of the hospital at about 12:30 and it was perfect. Hardly a cloud in the beautiful blue sky and only about 78 degrees out. It had cooled down from the rain before. It's like the day was just waitin' for Tuli to make his entrance.

I was walking into the hospital the other day, and there was a mother there who had three young children. It was hot, she was holding a baby, and I could tell that she just wanted to get inside where there was air conditioning and she could set the baby down. Her little boy, who looked about 3 years old, kept running over to the fountain. He couldn't resist that cool, clear water. He wanted to put his feet in it... To see what it felt like to have that first feeling of cold water on a hot day, only to be follow by that feeling of pure enjoyment once your feet recover from the shock. He wanted to splash and play and enjoy the day. I thought that life is a lot like that. We want so badly to hurry along. To get inside where it's safe. Where we can be more comfortable. It takes a small child to make us stop and look at what is around us. To breathe in the fresh air and look at the sky. To put our feet in the water and experience the joy of life. It's amazing how through this experience with my son how much clearer that air smells. How much cooler and surprising the water feels. It's days like this that I'm so grateful to be alive! I am so grateful my son is alive!

Let us all be grateful for every day we have!

Love,

Janelle & the Kinikini Klan

Sunday, September 12, 2004 4:37 PM MT

The babies are on the mend. Arla is clearing up very quickly thanks to acyclovir (zovirax) and it looks like Baby J's foot is going to heal. After a few days it looks a little better. I'm just keeping it clean and dry and covered with a little bit of antibiotic ointment. There's nothing like Mom being home for a day or two to help everyone feel better. The kids are clean, fed, and I'm feeling like a much better person. No more beating myself up... For now. So Tina you don't have to fly out to Utah to smack me side the head!

I had the nurse at the hospital ask me last night when I was going to nursing school. LOL! She was serious. I am about to that point. A nursing certification would just be a technicality. I think when you're a Mom you have to be part doctor, social worker, couselor, master chef, janitor, cruise director, and weight lifter. You also have to have a hidden pocket with a trash can (because when your kids finish that candy, inevitably they are going to hand you the wrapper).

I just wanted to say thanks to everyone. I am going to try and work on our fundraiser this week, because it looks like we are going to have those medical bills from March to May and maybe even some from Sept. to the end of the year. IF ANYONE WOULD LIKE TO HELP ORGANIZE THIS FUNDRAISER, PLEASE, PLEASE, PLEASE LET ME KNOW. EVEN IF YOU CAN JUST DONATE ONE AFTERNOON OF YOUR TIME, THAT WOULD BE APPRECIATED!

Thanks for caring!

Love,

Janelle & the Kinikini Klan

Friday, September 10, 2004 9:45 AM MT

You know a lot of the guestbook entries kind of absolved me of being a terrible mother. But, you know I had to think about it again this morning when Lani was getting ready for school. She said "Oh, today is sharing day." I said, "Well, pick out something to take." She looked and looked and couldn't find anything. We are absolutely not attached to one thing. We don't have a favorite toy, we don't have a favorite blanket, we don't even have a favorite picture. Either this is a sign that I am a great Mom because my child has not had to attach herself to anything material, or I'm a terrible Mom for not giving her a sense of self. I don't know. I would vote somewhat for the terrible Mom because I dropped her off at school and she was too shy to walk up the sidewalk to go get breakfast. Sheesh!

What else have I done this week? Well, I brought Lia to tears yesterday trying to get her to do her reading homework. Which, really isn't a hard thing to do because she's so softhearted. But, I could be nicer to her. It's so aggravating to me sometimes though, because she drags her feet when it comes to school work. She never wants to apply herself. Sheesh!

I ended up taking Tuli up to get chemo on Wed. We got there at 2:10p which was really a miracle. That morning I had fit in a trip to the store to buy benedryl for Arla. An appointment to the doctor for Lani (which took four people to hold her down for her shots), and I had also taken JJ along for the ride and got him a varicella shot. Fielding calls from the hospital saying that they wanted Tuli there by noon. Dropping off a prescription, lunch from McDonalds, dropping Lani back off at school, packing for the hospital, getting a sick little girl, her aunt, Tuli, and the baby back in the van and taking them to Grandma's house, picking up the prescription, dropping that off and explaining the miriad of medication to Auntie, saying goodbye to my very poxy daughter and clingy baby, and whew, loading Tuli into the van to get to the hospital.

I'm tired just writing it. I felt like I had run a marathon and was crawling over the finish line. The thought of "Run and not be weary, walk and not faint" (or something like that) kept running through my mind. I kept saying to myself what marathon runners might say "The finish line is almost there. Just keep pushing, just keep pushing." I hadn't eaten, showered, or slept. I did all of the above when I got to the hospital.

That crazy day ended and Tuli got his chemo at 10:30p. I stayed there that night and yesterday all day. At 9:30p Ben called and said that Baby J had an accident. That morning he had gotten a 3rd degree burn on his foot from an iron that had been left down. Arla had been crying for her Mommy all day. Tuli's aunt Mea came up to the hospital to sit with him so I could go take care of those two. Thank goodness she was able to do that. Grandma took good care, but there's no one like Mom when you're not feeling good. I brought them home and Arla and J just laid on my bed and cried for an hour while I tended to them. If J cried loud, Arla cried louder. Ben came in and looked like death warmed over. He laid on the bed and kept joking about how he was going to just have a heart attack on the route one day because his heart isn't good anymore and he can "feel it". That was it. I started to cry.

Well, I bandaged up J's foot and gave Arla her medicine and they slept until about 6:00 this morning. They are still asleep now. Lia woke up this morning crying because she got a bee sting at school on Wed, and it has now swelled up to encompase her entire upper thigh. She bellowed and hollered this morning and I gave her ibuprofen and benedryl and told her to go back to bed.

So, I've got a sick husband, three sick kids at home and one in the hospital getting chemo. I wonder, could it get worse? I'm sure it could. I'm not even going to tempt fate. I'm just going to do my best and know that it could be so much worse. I'm just going to be thankful for what I have. Lani kept saying "I'm da lucky one." because she hasn't been sick. Yeah baby, you and I are the lucky ones. Hope it stays that way.

There were some bright spots this week. My mom and dad brought down a bed for Lia (she needed one bad) that my cousins Bill and Nanette gave to her, and my brother Joel and his wife Luann gave me a freezer full of food. I mean they gave me a freezer that was full of food. For real. The ward has been bringing in dinner. Our bishop has been a huge help. People have sent us money. I don't know how to thank everyone. But, thanks everyone! We love and appreciate everything!

Thanks for stopping by!

Love ya,

Janelle & the Kinikini Klan

Wednesday, September 8, 2004 9:52 AM CDT

CHICKEN POX! CHICKEN POX! OK, I'm a terrible mother. I know that this childhood disease has been all but irradicated and now my two youngest babies are going to get it because I was too lazy to keep current on their immunizations. In my defense, I was a working mother for the past 3 years and had two pregnancies during that time and it's been hard. But, I know. I screwed up and now Arla and JJ are both going to get it. Arla had a high fever yesterday and we ruled out strep at the doctor's office. Well, this morning she had pox all over her forehead and back. Now, how to fit this in with a 5 day chemo schedule this week and a doctor's appointment for Lani for school immunizations today. This should be interesting.

I'm waiting for a call back from the clinic to see if we are slated for chemo today. They said to call back yesterday, but it was after 5:00p and I'm wondering if Tuli's counts are too low. Well, we can hope.

CHICKEN POX! CHICKEN POX! AHHHHHHHHHHHHHHH!

OK, you're witness to the breakdown. I knew it was coming at some point! AHHHHHHHHHHHHHHHHHHHHH!

Now, if Arla or JJ get any pox scars I can have guilt payback for life! Isn't parenting wonderful?

Have a great day!

Love,

Janelle

Monday, September 6, 2004 9:51 PM MT

Thank goodness for holidays!
Today we attended the Fangupo family reunion. The Fangupo family are Tuli's paternal grandmother's family. Tuli took part in the water balloon toss, egg toss, tug-of-war, dance contest, and many other fun activities. It was so liberating to see him smile, laugh, and have fun. He ate some barbecue chicken, hot dog, and tonight he even ate some chicken nuggets! How we take eating for granted, just this simple act is such a struggle for this young man! When he was well he could eat any youngster under the table, his entire family can attest to that fact, and he was as rambunctious as they come. How we long for those days! We just want our "Little Bear" back!
Lately the only word in our minds is "remission", what a blessed word! Please let our little boy stay in remission, we may be getting a little ahead of ourselves, but chemo is he_ _, I will let you fill in the spaces. To see a powerful, spirited, active, upbeat, sporty, troublemaking, humorous, gentle, little teddy bear reduced to a shadow of his former self is an unbearable experience for any parent. We just hate seeing him go through this!
But if at all possible, we are both sorrowful, and proud of Tuli all at the same time. He has been a "Bear", he has met this challenge head on, and we ARE goona beat this, heck we're already part way there. We are also so proud of his siblings, they have taken a backseat to Tuli, and they have never complained about it. When they cry, it's because they are worried about their brother, and can't stand that he has to go through this ordeal. What selflessness. In the scriptures it says, "and a little child shall lead them." Truer words couldn't have been spoken, in a way our children have led and we've followed. They are so innocent, and they say exactly what is on their minds, oh that we could all just "become as little children."
Well, thanks for stopping by and checking on Dools! He is trooping through this, and anxious, as we all are, to get to the other side! One day Son, soon!
Love,
Ben, Janelle, Lia, Tuli, Lani, Arla, JJ

Thursday, September 2, 2004 11:03 AM MT

Mom, are time machines real?"

"No, they're just make believe. Like fairytale stories and stuff."

"I wish I had a time machine."

"Do you? What would you do with a time machine?"

"I would go back to when I was a little kid."

"Why's that?"

"Because when I was a little kid I had fun. I would make the cancer stop before it had a chance to grow."

"Sweetheart, I don't think there's any way that you could have made the cancer not grow. I don't think there's any way you could have changed it, because it's nothing that you or anyone else did."

"But why did I get cancer?"

"Because there's lots of little guys in your body called cells. They all have a job to do. There's hair cells, and skin cells, and bone cells, and even booger cells. hahahah. What happened is you had a little bone cell that didn't know what to do, so it just kept growing and growing and made more and more cells just like it."

"And it grew a cancer tumor?"

"Yep, it grew a tumor."

"And they had to go in and cut out the tumor and take my socket and make it just so?"

"Yep, and they saved your arm."

Silence. We're processing the information.

"Mom"

"Yeah?"

"I'm glad that they found the cancer when they did."

"I'm glad too, son. I'm glad it wasn't anywhere else but your shoulder."

"Me too."

Silence.

"Goodnight Mom. I love you."

"I love you too. Goodnight"



You know, I wish I had a time machine too. Except I don't want to go back. I just want to go forward. I just want to go forward to Christmas when this is all over. These talks help him. I'm sure of that. But, I wonder. I wonder how he's going to handle all of this later on. Is he going to be OK? Then I realize this won't be over in December. This will never really be over. It won't be something we'll ever be able to forget. We'll remember it every time we drive by the hospital. We'll remember it every time we talk about the year 2004. We'll remember it when Tuli wants to play football or basketball. We'll remember it every time we look at Tuli's arm. No, we'll remember it every time we look at Tuli's face.

But.... I'm not sure we should try to forget. How can we forget something that has changed our lives forever? How can we forget something that makes every day more important? No, I'll never forget. My son, my family, and I can look back at this incredible journey we took together and say: "Wow, that was hard. These things that are happening don't seem so important now. Aren't we thankful we have each other?" No, we will never forget how much we love each other, and that families are forever!!!

Love,

Janelle & the Kinikini Klan

Thursday, September 2, 2004 0:15 AM MT

I apologize. I don't know what happened to my journal entry, but I know that I put one in yesterday. Oh well.

Well, here's a recap. It looks like Sunday's entry got erased, too. Saturday we went to Lagoon. Tuli got wet and tired towards the end of the night, and I carried him back to the kiddie rides and took him to my parent's RV to sleep. We had a great time. Then on Sunday, we went up in the mountains and roasted marshmallows and ate lots of junk food. It was such a great weekend.

Things are going good. Tuli is taking the chemo OK. No major problems. We should be out of here by friday. The kids have been visiting. Tuli looked so good tonight, and I told him so, and he said "Maybe it is because the kids were here.". They bring so much joy to his life and I'm thankful that they are here to help him through.

Sunny's mom sent Tuli some Xango. For those of you who don't know what that is, it's supposed to be a natural cancer fighter/antioxidant. He loves the taste of it, and it can't hurt him. He has been drinking away and drank half a bottle today. I can't wait to see if it helps. THANK YOU SUZANNE FOR EVERYTHING!

Love you all. Thanks for stopping!

Love,

Janelle

Sunday, August 29, 2004 11:30 AM CDT

We had the most awesome day yesterday! My parents bought tickets for us to go to a local amusement park. We went with Julie, my sister and her four kids, my mom and dad, my grandma, Ben's sister Oti, and niece Le'o, and my other sister Alicia. Tuli, Lia, and our cousin Le'o, went with Julie and her girls and rode the big rides. I stayed with Arla, Lani, Oti and baby J and rode the smaller rides. At about 7:30 at night Julie and the kids went on Rattlesnake Rapids which is a water ride where you get soaked. Tuli came off the ride holding a soaking wet dollar bill that grandpa had given him. It was getting late and Tuli was very wet. At that point he said that was it. He could not walk anymore. His body had given out. So, I put him on my back and walked down to the kiddie rides where Ben was (he came after work). It was a pretty good distance, and even though Tuli has lost so much weight I felt like I was going to die. Tuli said he wanted to spend his dollar bill before it got ripped.

When I got to Ben, I put him in the baby stroller and we went back to my parent's trailer in the RV park. It was just in the nick of time, because while I was dressing Tuli, the temp dropped about 15 degrees outside. It was so nice for my parents to bring the trailer. It's a lot of work for them, but it made it so much better. Tuli was worn out, and some of us wanted to go back to the park for the last hour. Tuli was able to just curl up on the couch and watch disney movies while me and the girls went and caught the last hour on the rides. He slept there (holding on to the dollar that my dad had given him) and wasn't too happy about being woke up to go home, but the whole day was so wonderful for him. When I was dressing him in the bathroom he said "Today was such a fun day." I worried, and worried, and kept saying "Julie will call on the cell if he's not alright." I thought there would be something terrible happen. I thought that today he would be sick. But, nothing. He's fine and he had a great day! He woke up this morning asking where his dollar bill is.

So, needless to say we missed church. We should have gone, I know, but the kids were so worn out. Heck, I was worn out. I'm so flippin' sore from carrying that boy on my back that I can barely turn my head.

Yesterday morning, my church came and did a service project and cleaned up the yard. There was a big pile that needed to go out for the city cleanup. They took all of it, cut down a rotten tree, dug up the weeds, and rid my backyard of a hornets nest. It was such a relief, because we have enough to do with the inside of the house. It can be so overwhelming. THANK YOU TO EVERYONE WHO CAME AND HELPED HERE. I LOVE YOU SO MUCH!

One quick note. On Thursday we went up to Midway. I went to see my grandma Kohler. My kids were outside getting ready to leave and my grandma said "Janelle, you are such a beautiful girl.". I'm sure I've heard my grandma say that before, but for some reason, when she said that it brought tears to my eyes. It still does when I think about it. I think it is because I am going through such a hard time, and for my grandma to think that I am beautiful through all of my trials really touched me. I looked down at my grandma who has always been there for me. She is a beautiful, strong rock in the shifting tides of life. My grandma was in a chair and I got down on my knees and put my arms around her and hugged her and cried on her shoulder while she comforted me. I love you grandma, so much. What a great lady you are! When I told Ben, he said "I always tell you how beautiful you are, and you don't cry when I say it." LOL. Ben, you are so funny, and have always gotten the range of emotions from me. Laughter, sadness, joy, pain, anger, love, and everything in between. Because of that, I love you so much!

Thanks everyone for stopping by and caring. Pray for Tuli this week for chemo and Kristina as well. They are both getting metho.

Love,

Janelle and the Kinikini Klan

Friday, August 27, 2004 10:50 PM MT

Hey all you cyberfanatics out there! We are doing really good (for chemo). Tuli is feeling much better, and I think that the fever on Sunday night was a blessing in disguise. I never would have taken him to the hospital otherwise. Can you say "Emergency room, OVER MY DEAD BODY!" The oncologist on call last weekend really ticked me off, because he wanted us to go in to the emergency room on Sat. night just to get fluids for Tuli. It's like they think I love that place or something. I said to the doc on the phone "No offense, but I'm so sick of you guys that I could puke!"

So, are you kind of getting the picture? I would never had taken him without a fever and then the shingles would have gotten a hundred times worse before we caught them, and then we would have serious problems. The funny thing is, Tuli didn't have a fever on Sun when we got to the emergency room. Neither did he run a fever the entire 3 days we were there. I think that was God just telling me to get my son to the hospital. I've never been so thankful for time spent at Club Med (as some of my caringbridge friends call it).

We had a good day yesterday. Lia went to school, and I took the other 4 kids up to Midway to see my mom, grandma, and aunt. We had a good time up there and my mom hooked me up! I have more canned food and toilet paper now than I know what to do with. Well, my kids might not like some of the canned food, but they won't pass on the toilet paper (I hope!). Lia was very upset that she didn't get to go to Midway. School sucks. I am an adult now and my perception of school still hasn't changed. I know that it's a necessary evil and has allowed me to be able to type these journal entries and sound somewhat intelligent (now, now, I heard that). But I still don't like the stringent schedule of school that overtakes your life and time, and then everything else in life has to revolve around it, including your family. Plus I don't always like educators. Don't get me wrong, I like teachers. I just don't like "political educators" that tell you when you can take your kid out of school, and then gauge whether or not you're a good parent on the amount of days your child is tardy. Basically, your children don't belong to you after age 5. They belong to the government and the school system. They get to tell what time you are going to get up in the morning, whether or not you're a good parent (based upon whether or not you bring cookies to the Halloween party, I guess), and whether or not at any given time you can leave the state on vacation.

Ok, enough about that. I'm going to offend some people (like I haven't done that before). I honestly don't mean anything by it. Life is just too demanding sometimes, and I'm just totally lazy.

I was going to let Tuli sleep in this morning because we had a blood draw. But, he woke up after Lia had left for school and was mad because I hadn't woke him to get ready. I said "You're going to have to wear your mask, because last time we took your counts they were low." He said OK and got ready. I took him over to the school. He hadn't met his teacher yet. I walked him up to the room and my heart was pounding. It was worse than taking my oldest to kindergarten for the first time. I was so nervous for him. I told him on the way up to the room that if anyone made fun of his mask to just tell them that it's because he's allergic to them. (I should have told him to say that he was wearing it because they stink, hehehehe). And, I just told him to not let anyone make him feel bad because he is the strongest kid I know. He had a great day! He said that he even ate a hotdog at lunch! He saw his best friend from last year and had a big smile (under his mask mind you) when he came out. The only thing he said is that his teacher was really nice when I was there, but when I left she wasn't nice anymore. I told him that he has the best excuse in the world to avoid her, and that if he didn't want to deal with her he could just have Kate tutor him at home. He's fine academically. He brought home his work today and had 100n everything. His 1st grade teacher said that if he skipped 2nd grade that he still wouldn't be behind. He was 2nd in the class in reading last year and 1st in math. This was even after getting diag. in March. and only making 2 days of school after that. AM I BRAGGING?

Ok, I am. I'll quit.

Love you all. Thanks for caring and stopping by!

PS.. I bet you're wondering how Tuli ate a hot dog at lunch with a mask on. I wondered that same thing just now when I read the journal entry again. Well, good news is that his counts were up today and he can stop his neupogen shot. So, it didn't matter anyway. I just he was really good and slipped the hotdog up underneath the mask. Yeah right. Bye bye

Love,

Janelle and the Kinikini Klan

Thursday, August 26, 2004 9:10 AM MT

Well, we did go home yesterday at about noon. I was so happy! We got out much sooner than I thought we would. Thank goodness for wonderful nurses that can spot shingles immediately. They weren't even that bad. He really only had one on his back and a cluster under his right nipple. The acyclovir is clearing them up quickly and this wasn't as bad as I thought it was going to be. Counts are slowly climbing. WBC's are still 1.4 and ANC is 500. Still low, but much better. Tuli wanted to go to school today and wear a mask, but I didn't wake him up on purpose. I am too paranoid to send him to school with his counts that low. I told him he would have to wear a mask, and he said OK, but I would be dying all day wondering if he was OK. He said that mask makes him nauseous sometimes and that he didn't want to throw up in front of his class. Life is so weird right now.

I got a call the other day from an old friend. It was so good to talk to you Melissa! Thanks for the call. It meant so much. I feel so grateful to have so many people who care and pray for my son. Your prayers must be working, because I can see them working.

Anyway, I'm going to drive up to Heber today to run some errands.

Much love to you all!

Love,

Janelle and the Kinikini Klan

Wednesday, August 25, 2004 10:45 AM CDT

We're going home soon! They said we can be out of here as early as noon! Tuli's shingles are under control, and although his counts are still pretty low, we avoided a feeding tube after I forced him to drink a nutrition drink last night for dinner. That drink was worth 500 calories. He's feeling so much better.

Yesterday, the child life brought in a can of shaving cream and paint for Tuli to play with. Little did they know that if you give Tuli an inch, he'll take a mile. He wiped it all over the door, all over the bed, all over the floor, all over the wall, and all over the nurse (hahaha). I just sat there and let him do it. I figured that all of the wiping up after would be completely worth it, and it was. I only wish that I had a camera. It was hilarious. Tuli's nurse was Irish and he is awesome! He let Tuli slime him on purpose and then did a "hairdo" on Tuli's head with some of the cream. People came by his window and looked in and laughed and laughed and we hd a grand ol' time! I was proud of myself, because it was a testament to how he "fears" his mother because I did not get one spec of cream on my clothes (much to the chagrin of Irish).

Well, hopefully the next time I make an entry it will be from my own keyboard.

Love you all,

Love,

Janelle & the Kinikini Klan

Monday, August 23, 2004 8:00 PM MT

There was once a little boy named Tuli. All he wanted to do was go to school, have friends, play dodgeball, football and basketball, throw water balloons at the church party, go to the movies with his family, and be just like his Dad.

This weekend, I had to watch this little boy that had such a desire to do all of these things, but his little body wouldn't let him. He just wanted to be normal. How I wished and wished for that too. On Saturday, he finally broke down in the kitchen and I could see him trying to stop and hold it back. I picked up this little boy that 6 months ago I couldn't lift if my life depended on it, put him in my lap, and told him to cry. Cry as much as he wanted and cry as hard as he wanted. It's just not fair. I told my dad that tonight. It's just not fair. I want it to be over. I want it to be done.

For a few days, I had this feeling that Tuli was running a fever but could never catch his temp up. Finally last night at midnight it was 101.2. That meant the emergency room and I was dreading it. We came up here and the poked and prodded and poked again until I told them that it was enough. I couldn't hear my son scream at the top of his lungs anymore. This kid is so strong. When he is screaming like that, I know that it's enough. They took his counts and his WBC was still .5 and ANC still the same and platelets were 8. They transfuse patients between 15 and 25, so basically if he had gotten seriously hurt he would have bled to death. All you had to do was squeeze his legs and they bruised and even his shoes gave him big black bruises on his ankles. We were in the emergency until 3:00a and he just kept saying "Are they going to wake me up again?" His low platelets had just about knocked him out. He was so groggy. At 4:00a we were up on the 4th and in his room and they gave him platelets and I thought we were good to go and went to bed. At 5:00a he woke up complaining about all of the "mosquito bites" on him. I turned on the light and he was covered from head to toe in hives. He had an allergic reaction to the platelets. Some donor's blood just didn't set right. Got benedryl, went back to bed. Nurses, doctors, residents, fellows, every hour. At 9:00a the nurse came in and looked at him and said that he had shingles. He had chicken pox at age 2, and it lays dormant in your system. When your blood counts drop so low the virus takes on new life again and comes back. So, we are in the hospital for who knows how long until we can get this under control.

Well, as much as I dreaded coming to the hospital again, Tuli is doing so much better. They have him on morphine for his mouth sores and viral meds for the shingles. He also is getting lots of fluid so he doesn't dehydrate and will start on TPN again tomorrow if he is still not eating. He lost 6 pounds again this week. Down to 37 kilos which is about 75 pounds. Lia starts school this week, and when I went home tonight to get a bag of clothes my girls went into hysterical mode when I said that I was going to have to come back to the hospital. Arla cried and cried and Lia said "This is the worst year of my life. First grandpa died and now Tuli is so sick. I hate cancer. I hate that Tuli has to go through all of this stuff and that we don't see you and Tuli very much anymore. I hate it." Girl, I know exactly how you feel. I hate cancer. I hate it, hate it, hate it.

Good news is that Tuli's 1st grade teacher is going to continue to tutor him. This is a big relief because it will give him some sense of normalcy and continuity. I'm so thankful. Also, Mark and Raylynn. You are an answer to many prayers. You do not know how grateful we are to you both and your family. When my husband called tonight when he received your kind gift, he said "All of your prayers worked. The Lord has heard and your Aunt and Uncle were listening to his counsel." I am so grateful to you and your help in helping us to fulfill our obligations and take care of our family. May the Lord bless you!

Love,

Janelle, Ben, and the Kinikini Kids.

PS. I funny side note. When I was gone getting my clothes, I came back and Tuli kept telling me that Irish (his nurse) had drank his urine. I guess he had put some apple juice in a urinal (a clean one, I hope) and brought it out of the bathroom drinking it. Irish said that the look on Ben's face was priceless. Tuli still thinks that it was urine. Hahahahahahahaha! It's so good to see Tuli smiling again. Just thought I'd share. XOXOXO

Friday, August 20, 2004 1:48 PM CDT

Teki, you're awesome! Thank you so much! We pray for you daily in Iraq!

In other news: Wastin' away again in Chemo-ville!!

WBC: .6
ANC: 136

NO, these are not scores from the Olympics. These are Tuli's cell counts. Basically he has no infection fighting cells at all! A normal white blood count is at least 4.5 and a good ANC is at least 500. He is getting a lot of sores in his throat as a result of this because he can't fight them off anymore. This sucks!

We went and ran a bunch of errands yesterday and he threw up a few times because he gets car sick so easily now. Then he wouldn't eat anything all day. I hate this stuff. Tomorrow we have a water balloon party at the church and I don't know if he can go. He's supposed to avoid indoor places with a lot of people like malls, church, etc. I think I might must put a mask on him and take him because it's outside. I don't know. I think that church will probably out of the question for him this week. Indoor with all of those other children, you never know what is floating around. Something that doesn't make you and me sick will make him sick so easily. Once he runs a fever that hits 100.5 it's hospital admittance time and I don't feel like cutting our time at home short.

Love to you all! Thanks for stopping by!

Love,

Janelle, Ben, Lia, Tuli, Lani, Arla, J

Thursday, August 19, 2004 1:13 PM CDT

Have you ever had to sit day after day and look at your child and wonder if he's skinnier than the day before? It's kind of like when you diet and you look in the mirror day after day and you hope that you're skinnier except it's the opposite. You hope that he doesn't get skinnier. You hope that he puts on weight. When you start to think that he's getting skinnier you start to panic. You start thinking about IV lipids and feeding tubes and you hope and pray that you're wrong. That it's just your imagination and that you just forgot to look at him last week and there's really no difference. You start telling yourself there's no difference. You start a conversation with yourself "He's fine. He's the same as he was last week. He'll pick up his eating later and gain it all back. His arm doesn't feel as cushioned as before. But, it's just my imagination. He's been like that for awhile. He's fine...he's fine. Then you start to drive yourself crazy thinking about it all the time and not just looking at him in the morning to see if he wasted away overnight, but you look hard at him everytime you see him.

Such is the chemo life. Things are going as good as could be expected right now. Tuli has one little sore on his tongue that made his eating slow down a little last night. But, otherwise he eats here and there and I'm thankful for every bite. He just looks too skinny (see what I mean).

Anyway, this week has gone relatively slow. I'm grateful for that because it feels like we've spent much more time here than we have. This last week has been wonderful. We have only had two blood draws and a dental appointment today, but other than that no doctors. No hospitals. No bathroom every two hours to flush out chemo through the day and night. No hospital food! I finally found the floor under my laundry pile, and evern had time to fold most of the clean clothes. It's heavenly!

Hope all of your days are good ones, too!

Love,

Janelle, Ben, Lia, Tuli, Lani, Arla, & J

Tuesday, August 17, 2004 6:16 PM CDT

I CAN'T STAND GOVERNMENT!!! I got a notice on Saturday that my Disability Medicaid for Tuli was denied. This was all because I didn't turn in a Disability Application. This was not on purpose mind you. They sent me 2 forms. One form was for me to fill out and one form was for Tuli's doctor to fill out. I thought they were both for the doctor and wasn't clear on what needed to happen. I rec'd a notice a few weeks ago that I needed to get these two forms in, and called his doctor and asked that they send them. They sent the portion they needed to by the due date, but because I was unaware that I needed just one more form I didn't send my portion. Now they will only cover 90 days from today. That means that all of my bills from May 17 and before I'm going to have to pay for. That's two months worth of therapy. And, it's another 30 to 60 days before my new application is accepted or denied. I have the hospital hounding me for money and it's a nightmare. The thing that stinks the most is they made me wait 90 days to see if we even qualified. This waiting around period is frustrating because I got my actual initial applicaiton in on May 12. That's a whole month before the deadline to cover retro to March. So, in plain terms I sat around thinking that I was having my case looked at and that they had all of the information that they needed and with all of the financial statements, check stubs, doctors release, letters, loan balances, and they won't accept it because I didn't fill out a form that says my 7 year old can't work and earn money. It's enough to crack you up!! Then my case worker acted like I did it on purpose. Like I ignored the due dates just because I didn't feel like submitting one little form. Why would I do that?

But, on a lighter subject. Tuli is doing well and eating here and there. I scrubbed my kitchen "floor" (really it's just a series of particle board) because it had gotten to a point. When your feet start to stick, you don't worry about whether particle board can get wet anymore. hahahahaha.

Lots of love and hugs to all of you!!

Love,

Janelle, Ben and the Kinikini Kids

Monday, August 16, 2004 11:37 AM CDT

It was hilarious last night!! Ben and I were sitting upstairs and the kids were playing downstairs and Lia comes upstairs and stands next to me... smelling strong of shaving cream and says "Mom, when can I shave me legs?" OK, this girl is 9. But, I bought her a training bra this year and some deoderant. I mean, I didn't think it would hurt anything. I was 10 when I got my first bra. She's almost there. Anyway, I said "Not now.". Wait a few years. She said in a very sad tone, "Ok". Then I said "Why do you smell like shaving cream? You already shaved even before you even asked me, didn't you?". She said "Yes.". I reached down and sure enough, her legs were as smooth as a baby's bottom. I said "No more! You haven't even gone through puberty yet and there's not one black hair on your body! I don't want to see a razor touch your leg until you're 13! No more!" Whew!! It was so funny. After my stern lecture and she had left, I started cracking up. Here we go. I am not looking forward to puberty and sweet little girls who want to grow up too fast.

Well, blood draws today to see how the boy is. We're expecting a drop in counts soon. That means staying home and not being around a lot of people. Last night he asked me about his arm and why he couldn't push it tight to the side of his body anymore. I just said that was the way it is now, but we're just happy that he has an arm and he can use it. He said "OK" and accepted it and moved on. He is really in good spirits and happy that he can move his arm more than he used to. The muscle started to ache in his back and shoulder last night because he was using it so much. That's a good thing, because it's building that muscle up.

Quote for the day: "Money is like air. When you have lots of it, you don't even think about it. But, when it's gone that's all you think about." -Anonymous

Love you all!! Thanks for stopping by.

Love,

Janelle

Sunday, August 15, 2004 2:42 PM CDT

Today was a good day. The kids and I got up and went to church. It was so great to see everyone and feel all of the support that I have there. The question of the day was "How's Tuli", "How's your son.". I figured after awhile I would wear a sign with all of the information, but really I'm so glad that so many people care. That so many people are concerned and love my little family. My kids were so glad to go and take part in primary. They gave prayers, talks, scriptures and got so excited about a water balloon party they are going to have on Saturday. That party is going to be a must because I don't think they will ever forgive me if they don't go. Is the party just for the activitiy day girls or for everyone? Cindy????

Anyway, I told Caroline at church today that I had an "angry week" last week. Yes, I did have a lot of days where I was angry and I told her that I hoped that was kind of past me for awhile. It's good to get it out, but also very draining to just be mad all the time. I will however be like Mr. Potato head and take along my "angry eyes" just in case.

The lessons today were all for me. Isn't it funny how that happens? The first lesson was preparation for battle (preparing for our own little day to day battles) and the reward at the end. I need to better prepare. I need to be strong when these bad days come. I need to be happier so that I can one day have a reward. If not in this life, then the next.

The other lesson was on forgiveness and not holding a grudge. The old quote from the scriptures of "I the Lord will forgive whom I will, but it is REQUIRED of you to forgive all men.". Well, I guess that means I have to be nice and not be mad next time I see that nurse, hahaha. The talks were on honesty and integrity. Well... I think we all need to work on that.

I am going to go prepare dinner. Tuli says that his stomach is feeling better and ate a whole piece of turkey last night. Hope all of your Sundays are restful. Pray for quick recovery.

Love,

Janelle and the Kinikini's

Saturday, August 14, 2004 3:12 PM CDT

Life rolls on. There's no stopping it. I heard something interesting the other day. It said that time is both our friend and our enemy. As humans in a way we want time to stop. But if time stopped, we would cease to exist. But what we really want is for everything to stay the same, but only get better. Isn't that so true?

Last night Ben and I got some time away. We went to a luau where Ben put in a pig for a new friend. I am sort of ashamed, because I went to this luau kind of angry. You see, this guy is loaded. His house is 16,000 square feet and he owns 12 acres in Sandy. He is a multi-millionaire. I kept asking myself, why? Why don't I have millions of dollars to make this trial easier to deal with? I was saying things to myself like "Life must be really tough when all you have to worry about is losing that extra 5 lbs." I hated them. I envied them. They say that envy is evil, that it's a sin. I can understand why. It could eat you up inside if you let it. Then, I got to meet this new friend and realized that he is a really nice guy. He was kind, and extremely grateful to Ben for his help. You see, Ben wouldn't take any money from him because he had told him that he would do it for free. It was a church function. It almost killed me, because then he asked me and I said "My husband didn't take any money from you, so I won't take any money from you." The way that my dad always did things for people just stuck with me, and I couldn't go against what Ben wanted to do for him. I will admit, I wanted to cry. I have $2 and not enough money to even buy milk for my baby. Oh well, hopefully this time will go quickly. I don't want to deal with it anymore.

It's funny, the friend kept telling everyone that Ben wouldn't take anything from him. I think that it blew him away. I bet that doesn't happen very often. People see what he has and only think about what he can give them. But, I'm still crying about it today.

Tuli is still sick, but has just started to ask for food in the last 15 min. I hope this is a good sign. Problem is, he wants teriyaki chicken and garlic bread. Well, I have no chicken and I have no bread so that makes it sort of difficult. Maybe he will settle for a piece of dry turkey and corn. Let's hope so.

I am starting to get caught up on my laundry. It is going to be so nice to be off this week. Ben did the dishes for me, so I don't have to stand at the sink all day doing them today. YEAH!!!!!!!!

Love all of you. Thanks for caring.

PS. Ben keeps saying that we need to change the song that's on the site so people don't get sick of it. But, Tuli loves this song and walks around all of the time singing it. It has become Tuli's anthem and when I read the words they make me cry. Tell me what you think? Are you guys sick of it yet? Do you have another good suggestion? Thanks.

Janelle and the Kinikini Clan