History

Monday, October 16, 2006 1:52 PM CDT

GRANT IS ELEVEN TODAY!!!

I remember being about 6 weeks into his diagnosis of leukemia, and he had his 8th birthday. The only thing I could think of was..."Will he see his 9th?" And here we are at 11! And as a matter of fact, he finshes treatment in 11 days! Better play the lottery today.

He is excited to order pizza from Dominoe's and watch Monday Night Football with dad.

Grant will go to the clinic on Wednesday of this week (18th), for his very last dose of Vincristine, and to start his 5 day pulse of steroids. Then his very last dose of nighttime chemo will be on Friday October 27th. Yippee, Yahoo, and Hooray!

I recently met a family that have a 4 yr old son Nick, who was diagnosed with leukemia less than a month ago. I just think of the road they have ahead of them, and cannot believe we made it. It's hard to imagine what we have been through, and we actually lived it. It is almost surreal.

I'm still guarded when it comes to Grant finishing treatment. I worried for three years about giving him the poison, and now I worry about NOT giving him the poison.
He is very excited to be finishing treatment.

I suppose that is all for today. We cannot believe that Grant is already 11. The years go by so quickly, and are so precious. We love him so much and are so grateful for such a positive outcome from this horrible nightmare.

Thank you for checking in.

Lynne Jim Grant and Kate

Friday, September 8, 2006 12:34 AM CDT

Hello out there from smoky Idaho!

We have wildfires burning all around the state, and it is creating really bad air here in town.

I wanted to do an update with some thoughts as we near the end of Grant's treatment.

Next Thursday September 14th will be Grant's very last spinal tap. Number 21. He will also have a bone marrow aspiration done to be 100% sure that he is cancer free. He will have another 6 weeks of treamtment, and on October 27th will take his very last chemo pills. He wants to have a party at Chuck E Cheese.

I remember three years ago when we found out about this nightmare we were entering into. It just didn't seem possible that it could be happening to US. But it was. I knew that if I could get through the next few weeks, not to mention the next few years, that I would be better. I knew that the more I could learn about leukemia and the treatment Grant had ahead of him, the more I would understand. But sometimes the more you know....the scarier it is. And scary it was. The fear never goes away. I knew I was giving him his meds on time, as directed, following the protocol, but that still wasn't a guarantee of his survival.
It was (and still is) out of my control. What will happen will happen, and that still frightens me to the core. It broke my heart that when Grant was hurting so much, was in so much pain, in the worst part of his treatment, that there
wasn't anything I could do to make it better. I could rub his back, give him heating pads for his tummy, help him to the bathroom, make him snacks, sit with him and watch the umpteenth episode of Spongebob Squarepants, but that was all. And I had to continue to give him the meds that were making him feel so bad.
But we got through the worst of it, and survived the next two years. And here we are less than two months from being done.
I wouldn't wish this experience on anyone. It has been the biggest ordeal our family has had to face. Thanks to the love and support of family and friends, we managed to get through it.
Thank you all for everything. This is not the last update.
I hope all is well with you and yours.
Lynne

Wednesday, June 28, 2006 8:37 PM CDT

Grant had his next-to-last spinal tap last week. June 21 was his appt. He had counts done at the clinic, and they were great, so we headed on over to PICU for his spinal tap. Things moved along pretty quickly, as the staff had 8 other sedations to do that morning. Many of them were for spinal taps and bone marrow aspirations for kids with leukemia.

Grant was his usual self. Somewhat anxious, very inquisitive, funny and charming. The staff all do such a wonderful job with him.

No word from the hospital that afternoon, or the next day, so that tells me his spinal fluid was clear with no indication of any leukemia cells. Great news. He got a lot of chemo, and we picked up his prescription for steroids.

While in the PICU, we had a chance to visit with Billy-a little guy who has been having a rough go of his leukemia treatment. Billy also has Down's Syndrome, so his mom and I have A LOT in common. Grant talks about him a lot, and enjoyed the visit-even though Billy was on a vent and couldn't talk.

Unfortunately, that would be the last time we would see Billy. He passed away peacefully on Friday, June 23rd. He fought a hard battle, but victory just wouldn't be his.

His dad mentioned that it feels like Billy is all around. Especially this morning when Billy's fart machine in his backpack went off all by itself. He was a very special little boy who touched a lot of people.

His parents have set up an endowment fund in his name to help families who travel to Boise for treatment for their children and don't have a lot of resources. You can access that fund at:

http://www.stlukesonline.org/donate/memorial.html

Be sure to indicate "Billy Hegg-James Endowment Fund".
Soon there will be a check box next to his name, but it is just in the start up stages.

It is so hard to believe that Grant's treatment will be over in about 4 months. I couldn't have asked for things to go better for Grant. I always say, we are one of the lucky families.

Thank you for checking in. I'll be putting some new photos up as well. I hope everyone is enjoying their summer. It has been hot here in Boise for the last week or so, but it's a dry heat!

Enjoy....

Lynne

Wednesday, May 24, 2006 11:17 PM CDT

Hello everyone!

Things are going well here in the Pekuri household. As well as can be hoped for, let's put it that way.

Grant had his monthly clinic appt yesterday, and his counts looked good, we saw his oncologist, Deb the nurse gave him his chemo, and we were on our way. I sure appreciate it when things go as they are supposed/hoped to.

He made it to school all day today. I never know if he will make it through the day during the week he has treatment. He feels pretty icky most of the week. The chemo he got is called Vincristine, and we call it "Stinky-Vinky". He is also on steroids for the week, and they really hurt his stomach. He came home from school today, and within 45 min was fast asleep. He has big dark circles under his eyes, and he looks tired. But that's ok. He's here.

Five more months of treatment. It has been a long three years, and at the same time feels like it has gone by in the blink of an eye.

Grant is still on his monthly appointments. He has two more spinal taps to go...hard to believe.

Grant is once again the Patient Honoree for Team in Training. This will be his last season. The events our new participants are training for happen in October, and that is when Grant will finish treatment. We are so honored to have so many great people willing to challenge themselves and make a difference. We thank you. Our family thanks you, all other families touched by cancer thank you. Keep up the good work!

All the best....

Lynne Jim Grant Kate

Thursday, April 20, 2006 12:44 AM CDT

Hello everyone-

It has been sort of a quiet month. Which is always good news.
Our only bump in the road was the possiblity of croup..and croup has put Grant in the hospital in the past. The big issue this time, is we were in Salem, Oregon visiting Jim's dad. So it's the middle of the night, Grant is barking and wheezing, and I'm wondering where the heck the local hospital is, if they can even treat a child wtih cancer there, if they know how to access a port etc. or would I have to drive to Portland in the middle of a rainy night.
Not much sleep for me that night! Well, he ended up making it through the night without a hospital visit, and we cut our trip short and came home the next day. Thank you Southwest Airlines for changing our tickets!!

Our next clinic appt is Monday April 24th, for counts and chemo. And hopefully Grant's counts will be good enough that he gets his chemo, meets with the oncologist, and we go home! But of course that is Steroid week....

I have a new friend who has a son-Billy who is 12 yrs old and diagnosed with Leukemia about two months ago. Billy had a stroke a few weeks ago, and is currently in The Children's Hospital in Salt Lake City. The stroke was a result of the chemo "Peg-Asparaginase". We are all aware that this kind of thing is a possible side effect, and you worry like heck, but you never REALLY believe it will happen to your child. Please keep Billy and him mom Kim, and his dad Steve in your prayers, best thoughts, good intentions, or whatever you believe in.

So, Grant is still in remission, but still in treatment. He has six months to go, of chemo every day, every week, every month, and two or three more spinal taps to go. (15 down!)

Thank you for checking in...and for those of you considering doing Team in Training.....Go For It!! It is truly a one of a kind experience. You will not regret it.

All the best-
Lynne
p.s. Thank you letters for Vertical Challenge will be on their way soon....

Friday, March 24, 2006 4:55 PM CST

Hello everyone-
Just home from the hospital. Grant's counts were great, and as soon as we found that out, we headed over to the hospital for his 12 weeks spinal tap. (whether he needs it or not!)

It all happened late in the day today (noon) because we had to coordinate with the dermatologist who wanted to remove a mole behind Grant's ear. Keeping Grant from eating and drinking all morning was not easy! We managed to go for a city bus ride (#29-Overland), then we went to the dump (always exciting!) then we went to have the van washed....and stretched every activity out as long as we could.

The procedure went well, the spinal fluid was clear in color, which is a good sign. But they will still "spin it down" to check for any suspicious cells. Hopefully the phone will not ring this afternoon. The only thing that happened that was a little disturbing was that Grant moved while the needle was in his spine getting the spinal fluid out. He actually bent the needle, which the doctor had never seen before. The needle didn't come out, it was not in an area where there are nerves, there was no blood, and none of the needle broke off. Still, something else to worry about is just what I need right now! Grant took a little while to wake up and was requestion Cheeetos right away.

He got a lot of chemo today. He got Methotrexate into his spinal column, and Vincristine into his Port-a-cath, and will start his 5 day pulse of Steroids tonight. Oh boy, Spring Break is gonna be a fun one!!

Thank you all of our Team in Training participants who took the time to sign Grant's guestbook. Thank you so much. It really means a lot to know that so many people are pulling for him, and we are not in this alone. Many of you mentioned that you are inspired by Grant. Well, we are inspired by you too. You guys are all making a difference, for families like us. Thank you.

Thank you to all of you who donated to my fundraiser for American Cancer Society. I'll be working on my thank you letter later next week. I'm happy to report that I was the #1 Fundraiser for the event, I raised over $8,000. My team was the top fundraising TEAM, raising over $14,000. The whole event raised over $44,000. Very successful for a first time event. It was a really fun day, with a lot of runs taken. I skied over 60,000 vertical feet that day. The guy who skied the most vertical feet was on MY team, and skied 96,000 vertical feet. He just wouldn't stop. I had to bring lunch to him on the chairlift!

That's all for now. I know, I need new pictures. I'll work on that next week too.

Love,
Lynne

Wednesday, February 1, 2006 8:10 PM CST

Hello Everyone!

This is the year 2006. This is the year that Grant goes off treatment for leukemia. It doesn't officially happen until October, but THIS IS THE YEAR!!!!!

It is hard to believe that August 28, 2003 was so long ago. When Grant was first diagnosed, I didn't think I could get through a day, week, month or a year. Here we are two and a half years later, seeing the light at the end of the tunnel.

Grant is doing so well. We were in the clinic for counts last Monday (January 30), and things continue to look good. His counts were so good in fact, that Dr. Johnston increased his chemo a little bit. As soon as it looks like his bone marrow is recovering from the onslaught of poison (chemo), they bump up the chemo to slap down the bone marrow. They are afraid of the bone marrow producing too many cells again, and they would go out of control, and that would be a relapse. We don't want that.

The daily, weekly, and monthly chemo is almost routine for us now. Grant still feels pretty crappy after his monthly vincristine and his 5 day steroid pulse, but he continues to be our champ. I think the daily chemo takes its' toll on him as well, but I've heard people say that it is all they know at this point, and comparing it to how they felt at the beginning of treatment.....

I still worry about him. I'm still so scared. I don't think that fear will ever go away. I'm just holding on to hope. I have held my breath for two and a half years now, and only have eight months to go. Life goes on. He goes to school when he can, which is quite a bit. Grant is in fourth grade this year at a great school with great teachers and a lot of loving support.

Grant is once again the "Patient Honoree" for the Leukemia/Lymphoma Society's Team in Training Program. Many of you may remember Jim and I participating for the last two years. We have a great team all starting their training and fundraising for the events in June. I'm always moved by the regular everyday people who are willing to put themselves out there, raise the money, do the training and participate in one of the greatest events in their lives. Thank you all so very much. GO TEAM GO!!!

Jim and I will not be participating this year, but I am still going to be doing a fundraiser. This time it is for The American Cancer Society. I'll be getting my letter done soon, so look for it in the mail! You won't belive what I'll be doing this year! I'll miss Team in Training, but we will still be involved.

Thank you for checking in. I'm sorry it was so long since my last update, but like I always say, no news is good news! Nothing to report!

I can say that the skiing is great, we are having a banner snow year for us...almost 100 inches at the top of Bogus Basin! I'm happy because I can get out and ski a few times a week. It keeps me sane.

Thank you for checking in. I'll be posting new photos, but I have a new digital camera, so I have to learn it all again.

Feel free to email me privately for any info, or just to say hi!

Love,
Lynne

Saturday, October 8, 2005 6:35 PM CDT

Thanks for checking in. Sorry it has taken so long to post an update.
Grant did an awesome job getting over the parvo virus, and was back on all of his chemo by mid August.
Yesterday was his 12-week spinal tap, and all went well.
His counts looked good, no call from the hospital after the spinal-I always dread the phone ringing and seeing St. Lukes on the caller ID. So, no news is good news, but I hope I'm not "jinxing" myself....Monday is just around the corner. They would call if they saw some suspicious cells in his spinal fluid, inidcating a relapse. (still holding breath....I feel like I've been holding it for two years)
The kids started school at the end of August and it was just in the nick of time, for me anyway.
Kate is in second grade and has a wonderful teacher. Kate is quite a reader and really enjoys learning. Good thing too, because there is Grant to deal with. School for him this year started out pretty well, but the honyemoon was over within a few weeks. He's back to his Fragile X behavioral issues and struggling. Interesting though, that the resource room teacher (special education), has an 8 yr old son with Fragile X. So, she understands Grant and his behaviors from the start. I don't have to educate her, convince her or teach her. She understands how these kids learn, process, interact etc. Grant's teacher in his 4th grade class is an angel in disquise. She is so willing and eager to do what it takes to make Grant successful in the classroom this year. Too bad Grant is not letting that happen a little bit more. My thoughts on it all is that he has been on chemo for two years, and is tired of it. He still takes chemo every day, and there is a low grade feeling of *crap*. He just doesn't feel well, has a hard time processing or understanding that feeling and acts out behaviorally. It's hard for him to go to school all day, and maybe we need to look at that. Maybe it's more appropriate for him to attend part of the day. He still comes home and naps for a few hours. He was off of all of his chemo during the month of July and his behavior was great. Jim and I concurred.....must be the chemo. Sure enough, as soon as he was up to his full dose again, the bad behavior resurfaced.
Along with the bad behavior is the regular Grant. Funny, charming, endearing, smart, eager and all boy.
So, that's it in a nutshell.
Both birthdays are coming up. Kate is Oct. 19, and Grant is Oct. 16.
Jim and I have been riding as much as possible.
I got on a painting kick and did my kitchen, hall, bath, entryway and family room. Lots of great colors. Now what you see is the shabby furniture, dated floor, dirty carpet, old countertops, dated cabinets ets. Pandora's box I tell you!!!!
We are looking forward to winter, I think. We will all be skiing and there had better be some snow this year!
Hope you are all well and happy, as usual.
Love,
Lynne

Tuesday, August 9, 2005 4:17 PM CDT

After six weeks of scratching our heads, trying to figure out what was going on with Grant, we got a postitive test back for "Human Parvovirus B19". Different from the parvo that dogs get.
It was one of the first things tested for, and it was negative. Another test was sent out, and the results slipped through the cracks at the clinic and we were never notified. Until I followed up.
So, it connected all of the dots and explained everything.
We were still going in weekly for counts. We went in last Monday, Aug 1st. I was in tears driving to the clinc. I'm tired of this. Tired of having a sick kid with low counts who can't go anywhere! I did some research on the internet and learned that kids with suppressed immune systems in maintenance thereapy for ALL leukemia can take 3-6 months to get over this parvovirus. I just didn't know how we would get through it.
Leave it to Grant. We got his counts and everything is back up! Red blood cells, hemoglobin, neutrophils etc. Yippee!
I call him the "comeback kid". So, he was able to start back on all of his chemo that had been on hold for about 6 weeks. Did his week of steroids last week and was feeling pretty bad. To top it off, Kate got parvo too. So I had TWO sick kids at home and no workouts for me! Things were a little grumpy around here to say the least.
Grant did get the go ahead to attend Camp Rainbow Gold...also known as Cancer Camp. He left on Sunday the 7th and will return Friday the 12th. No word yet, and I don't expect to hear anything if all goes well. He went last year and loved it. Kate also had a week at Girl Scout camp. I'm sure she was up there exposing everyone to parvo.
So, that bump in the road is finally solved.
I read that parvo can mimic a leukemic relapse. Sure glad it was parvo. Even if it does end with an itchy red rash!
Thanks for checking in. I sent out my thank you letters for the bike ride yesterday and today. Very delinquent!
Love,
Lynne

Thursday, July 21, 2005 8:22 AM CDT

Just a quick update.....no improvement yet in Grant's situation. We went in on Monday for counts and things are not on the rebound yet.
His hemoglobin dropped, and there wasn't any sign of "new red blood cells" in his blood smear. That tells us that his hemoglobin will continue to drop and he will probably need another transfusion.
What is causing it you ask? Good question!
The doc thinks it is some sort of viral infection "attacking" the bone marrow, not letting it produce red cells. In a healthy person, it could go unnoticed, but in Grant's case-he is not able to fight it because his system is so suppressed already. Could take months to get over it, which would involve more than one more transfusion.
They have sent bloodwork off for several different tests, all coming back negative. Including one of his bone marrow which would tell us if this is any sign of the leukemia coming back...that was negative too. Whew.
The situation now though, is that I am going out of town for three days. I'm heading to San Francisco to see family, but the main reason for the trip is a Fragile X conference at the MIND institute at UC Davis. I'm worried about being gone....if Grant needs a transfusion, I want to be here. The last one didn't go so well. Jim is perfectly capable of taking care of the kids...but with Grant it's always ME that decides "call the doctor" or "we're bringing him in".
So, there you have it.
It is HOT HOT HOT here, as well as all over the country it seems. No big suprise, this is the high desert and it is July.
I'll be seeing my brother Sean and his family in SF, and my brother Herbie and his family from Conneticut just happen to be visiting as well.
Keep us in your thoughts and prayers, and take care.
Love,
Lynne

Sunday, July 10, 2005 3:41 PM CDT

This is my third attempt to update this webpage.
Just as I finish with a new journal entry, but before I can save it, the computer kicks me offline. (yes, I am still on dial up dinosaur)
Last Thursday was Grant's regularly scheduled 12 week spinal tap. We did counts first, and his hemoglobin was low.
They decided to do a Bone Marrow Aspiration while he was asleep for the spinal. No sign of leukemia cells lurking around. Whew.
His hemoglobin was low enough that he required a transfusion. That was his first through all of this treatment. Pretty unusual to go so long without one.
By the time we got home on Thursday, it was 5pm. By 7pm Grant was on a steady downward spiral. He went from bad to worse very quickly. We got back to the hospital at 10:30 pm. He was slightly dehydrated, nauseaus, constipated, in a lot of pain-his legs, couldn't stand upright, hot, cold, sweaty, clammy, and very upset and uncomforatable. He was started on an IV, and given morphine to relieve the pain.
We stayed until Saturday late afternoon. Nothing was really resolved, but the nausea had gone and he had a bowel movement (aka-poopie). The doctors didn't know if the leg pain is in his muscles or bones, they didn't know if it is nerve damage from the spinal tap, a reaction to the transfusion, a reaction to the chemo he got, it's sort of puzzling to all of us.
They sent us home with instructions to give Grant ibuprofen around the clock and also Ativan, which is a narcotic-to be used as a muscle relaxer. We have narrowed the pain in his legs down to his hip flexor muscles. When the ativan has kicked in, he is able to stand upright. When it has worn off, he is bent over again, not able to stand.
He said to me in the hospital "I'm old" as he is hunched over, shuffling back to his bed. He also turned to his IV pole/pump and said "come on little guy". So, Grant has not lost his sense of humor in all of this.
We also had some x-rays done before we left. If this does not resolve itself, or we cannot figure it out, he will go in for an MRI, and probably an orthopaedic consult.
This is just a minor bump in the road. In the meantime, all daily and weekly chemo is on hold, until his counts recover. We will check counts again next week.
Other than that, everything is just peachy around the Pekuri household. Just a little stress and fatigue to liven things up!
Kate is getting excited about Girl Scout sleep away camp. She will go up north to McCall for a week, with a good little friend from her GS Troop.
Grant will attend Camp Rainbow Gold again this year and is very excited about that.
I will update when and if we can figure out what is going on.
Hope you are all well, and thanks for checking in.
Love,
Lynne

Sunday, April 17, 2005 8:50 PM CDT

Two months to the day! I think that is the longest gap so far.
Oh well, no excuses, just life I guess.
Things are going pretty well for Grant, in the grand scheme of things. He is still in treatment for leukemia, half way through.
So, in terms of how well Grant is responding to treatment, things are going pretty well. His counts have mostly held steady, with a slight dip last Monday. He had a clinic appt for his counts and we were scheduled for his spinal tap at the hospital. When 'they' do the spinal tap, 'they' are looking for any signs of a relapse. A relapse in the Central Nervous System would not show up in the monthly blood work.
They want to check his counts again in two weeks just to be extra cautious, and you know me, I'm all about caution.
In terms of the fact that we are stil putting poisons into our son's precious little body to try kill a horrible beast inside that we really have no control over. THAT still sucks. (pardon my french).
Beyond all of that, Grant is doing fine. He is happy, school is still going well for him and it really shows in his behavior at home. He has had a few special outings as you can see from the photo on the homepage! The next fun adventure may be a police car ride. I just have to make the call.
Kate is growing up before our eyes. She has been enjoying the nice weather with some of the neighborhood kids, riding bikes, scootering, rollerskating, jumproaping, sidewalk chalking etc....)
The mountain biking has been great. We got some late season precipitation this year and we actually have some wildflowers up in the foothills and things got very green very fast.
Jim has also been riding, road and mountain, and he is looking forward to summer.
That's all, thanks for checking in.
As always, I hope this note finds all of you out there doing well. Being happy, enjoying life.
Lynne

Thursday, February 17, 2005 3:03 PM CST

Grant had his monthly clinic appt on Tuesday Feb 15th.
Everything went well, except being there for over two hours. They were unfortunately very busy, with lots of little bald heads cruising around. I see so much there, Ewings Sarcoma, Osteosarcoma, Brain Tumors, Leukemia, Lymphoma, eye tumors, blood diseases.....way too much. Way too many kids and families suffering.
Grant did great, and his counts had come up a little. The past two months they were going down...and I was anxious about them on Tuesday. Of course they were up, and you know what that means.....the docs increase his chemo to slam his system back down. We came home from the clinic and Grant took a big giant nap. Last night he slept for over 11 hours.
But he's a trooper, attending school all day, and loving it!
He's doing so well in his new school. He's learning so much.
We just go month to month now, getting his counts, adjusting the chemo accordingly, creating flow charts to keep up with the changes. This is steroid week, and they can affect his mood. Well, yesterday Kate had her art class downtown, and Grant and I go for a city bus ride to kill time. We missed our transfer and had to walk back to the art center-only a 20 min walk, and it was sunny. But to Grant, it was the end of the world. He expressed his dismay by laying down on the sidewalk and refusing to get up. THAT was fun. Then I finally got him up, and he wouldn't walk. That was fun too! I finally persuaded him to walk by being silly, saying mommy's a ding-dong and we were on an adventure. It worked. We made it back.
Everything else is ok. My training for the marathon goes pretty well. I'm a little bit worried about my knees. They tend to hurt after a run. I'm making sure to ice them a lot, stretch a lot, and I have a weight lifting program specifically for runners-or, like me, people who run. Haven't started that yet. I usually run down on the greenbelt along the river. Sometimes with the dog, sometimes without. Sometimes with music, sometimes without. Our longest run so far was 8 miles. I just got back from 6 miles today. Saturday is our group training run and plans are to go 10 miles. Who would have thunk it!?
A great big THANK YOU to all of the donations I have received. Just like last year, it is heartwarming to know that we have so much support out there. Family and friends.....what else is there?
Grant has an appt for a haircut today. Not one of my favorite things to do with him, major sensory overload. But it has to be done, and our hairdresser is a saint.
Hope all is well for everyone, and feel free to drop an email or sign the guestbook!
Lynnepekuri@aol.com
Love,
Lynne

Saturday, January 22, 2005 3:35 PM CST

Is it already 2005?
Yes, and I have not done a journal update since November, and I apologize for that. As usual, no news is good news.
Grant remains in remission from this horrible disease. The leukemia is in remission, but that does not put my worry into remission. THAT is still going strong!
Grant is about half way through the three years of treatment. This last week was a tough one, as he had a spinal tap on Monday the 17th, got A LOT of chemo that day and did a five day steroid pulse ending Friday. The tummy aches usually linger for another day or two, so this weekend so far has been rough.
Grant is going to school full time, after changing schools two weeks ago. His old school wasn't (or wouldn't....)meet his needs, so we went to a school that would be able to. He handled the change like a champ and loves his new school. He is excited to ride the bus and is the first one to get on in the morning. He can then act as the host, greeting all of the kids as they are picked up.
Kate is blasting through first grade with terrific report cards and lots of hard work.
Our ski season is still off to a slow start...I think we live in the "donut hole of the west"-storms all around us, just not ON us. Oh well, good winters will come and go.
Grant is skiing again this year in his adaptive ski program, and I ski with Kate while he is in his lesson. Jim unloads all of the gear from the van at the lodge, then heads over to the Nordic area for some X Country skiing.
Ok, now for the really, really, really big news. I am going to run a marathon. (audible gasp)
Yes, I want to do a Team in Training event for each year that Grant is in treatment...so that means three. Last year I did the 100 mile bike ride, and thought I would have to step it up a notch this year. Remember, I am NOT, nor have I ever been, a runner. But it's time to challenge myself.
I'll do the marathon this year in San Diego on June 5th, so what does that mean for next year? Something to do with Biking, Running and Swimming......
I am hoping to get my fundraising letter written this weekend, and send it out by next week. I am also hoping you will all be able to contribute. I also hope you will not be offended in any way that I ask again. Because this cause is so important. Grant is alive because of people doing fundraising over the years, to someday find a cure for Leukemia and related blood cancers.
That's all for now.
I hope 2005 finds you all doing well and staying happy.
Life is good.
Love,
Lynne

Sunday, November 21, 2004 8:18 AM CST

What a week we had on Grant's Make A Wish Trip to Disney World in Florida.
We left on the 12th of November and returned on the 18th. We stayed at a place called "Give Kids the World Village". Give Kids the World is "a non profit, 51 acre resort that creates magical memories for children with life-threatening illnesses and their families. For more that 5,000 families each year, Give Kids The World provides a week-long dream vacation to Central Florida that includes accomodations, attraction tickets and meals, at no cost to them."
Their motto is..."Imagine a world governed by a rabbit, where icecream is endless and having fun is a full time endeavor"

It was so great. We were there for five days and went to five parks.....Magic Kingdom...Sea World...Animal Kingdom...MGM Studios...and Universal Studios/Islands of Adventure. It was tiring, but worth it. Everyone at the Parks treated us like royalty. We had a "Give Kids the World" pin we had to wear, which got us to the front of every line. THAT was great. Grant has a hard time waiting....and we were able to do more without having to wait in a 45 minute line for an attraction.

One thing we really enjoyed were the "shows". Lion King, Beauty and the Beast, Little Mermaid, Shrek 4-D, Jimmy Neutron, Muppets 3-D, Pocahontas, Shamu etc. They were all first rate, great talent, singing and dancing.

We had lunch at Pizza Planet, after having our photo taken with the Toy Story Gang while at MGM Studios.

Grant and Kate got to feed the dolphins at Sea World and we enjoyed lunch in the Shark Tank.....a restaurant set amid the shark tanks at Sea World.

Kate got to meet all of the princesses, and get all of their autographs. We had a nice long chat with Pocahontas, who wanted to know how many summers Kate had been living, and did we travel by canoe from Idaho?

But better than all of the Parks, and characters, and rides and attractions, was Give Kids the World.
What a magical place it is. We ate our meals in the Gingerbread House, after riding the carousel endless times. There was miniature golf, a video arcade, swimming pools, water park, fishing, a movie theater, horseback riding (Grant preferred to go for a ride in the golf cart...), and an ice cream parlor that was always open. There was something going on every night. One night was a pool party with Shamu, another night was Mayor Clayton's (the Village's Mascot-a six foot rabbit) birthday party, one night was an outdoor movie with a bonfire and s'mores, Jim and I went out to dinner alone one night while the staff of volunteers (about 500 in all-not in one night) watched the kids with crafts and a clown show), and one night Mayor Clayton came to tuck the kids into bed.
I met a lot of families from all over the world, with all kinds of illnesses. It makes me realize how lucky we are.

The weather was great, we didn't get lost and almost did everything we wanted to do. We could have been there two weeks and still not managed it all.

It was all over too soon, but we have great memories of a week without worry of Dr. appts, counts, hospital vistis or finances. It was really the trip of a lifetime. There are new photos in the photo album-please take a look!

Grant goes in for counts and chemo on Monday-his monthly visit-and his five day pulse of steroids. Good thing it's Thanksgiving! Lots of food around.

Thanks for checking in...hope you are all doing well and looking forward to Winter!

Lynne

Saturday, October 23, 2004 10:27 AM CDT

Hi Everyone!
Last Monday (18th) Grant went to the clinic for counts, then over to the hospital for his 12 week spinal tap.
His counts were good. Up, actually. The oncs like to keep his ANC at about 1000-1500. (that is his overall ability to fight infection). For the past 5 months or so, he has been right on the money. Last Monday, his ANC was 2400. A little high. So, we have increased his nightly chemo by 50The reason his counts went up is because his bone marrow is starting to recover and cranking back up. That, and he's getting bigger. So, just when he starts to recover, they slam him back down. For two more years.
I've included a photo of him in the hospital during the spinal tap in the photo album. Please take a minute to look. It's not nice, (not graphic), but a huge part of what we go through. Yes, he's doing great. Yes, he's in remission. Yes, he's back in school full time. Yes, we still worry. Every day. Yes, we're still scared. Every day. We just love him so much, and appreciate him so much. He is such a special little guy.
He turned nine on Oct 16. Katie turned seven on the 19th. What happened to 4 and 2??!! They are growing up so fast. They are both great kids and we are so lucky to have them.
I managed to enjoy the beautiful fall weather we had here. Out on my mtn bike or hiking 4-5 times a week. Now the weather has turned, and ski season is right around the corner. I think Grant will ski this year in the program at our local mtn for people with disabilities. It's agreat program and Grant really likes it. I'll probably ski with Katie again this year. I really like spending the day with her on the mtn. It looks like Jim will continue with his cardio-vascular workouts and skate ski this season. There is a great nordic center right next to the alpine area.
We are going to Disneyworld for our Make-A-Wish trip on November 12-18. The kids are excited, and I'm not sure what Jim and I are. Should be a pretty special trip though.
That's all for now. We go in in one more weeks to check his counts to make sure we didn't increase the daily chemo too much.

Saturday, October 9, 2004 11:53 AM CDT

Hello everyone,
We were supposed to be in Florida this week, but I re-scheduled due to the weather and hurricanes. We will now be making Grant's Make A Wish trip to Disneyworld on November12.
We are delaying some of his treatment one week this month, and one week next month. This due to the timing of the trip to FL.
I was not too interested in taking Grant on an 8 hour trip across the country on day five of a five day steroid pulse. Also, he would have gotten a lot of chemo five days prior, and he usually feels pretty lousy.
So, our next clinic visit is Oct. 18, for counts, chemo in his port, a spinal tap with chemo up into his spinal column and the beginning of five days of steroids. Hard to believe that the last spinal tap was 13 weeks ago. Time really flies.
School is going well, Grant is attending every day, all day.
Kate (as she now likes to be called-not Katie) is doing great in first grade and making a lot of new friends.
Our fall weather has been spectacular, with Mommy getting out for lots of bike rides and hikes.
Winter is just around the corner, so we are getting all of the necessary ski gear together.
Jim is doing well, except for almost slicing off his finger at work.....but he'll be ok.
I hope you are all well, and check in again soon.
Love,
Lynne

Monday, September 13, 2004 9:55 PM CDT

Yet again, a whole month later. Pretty soon it will be seasonal updates....spring, summer, fall and winter.
Things are going well. Grant had his monthly clinic appt today and his counts look great and we are all very happy about that. We have been doing great. School started at the end of August so we are almost a whole month into it. Grant has been staying healthy and active. Attending school all day-riding the bus both ways. Usually tired in the afternoons, but he is still on daily oral chemotherapy so that isn't too suprising. Grant is in third grade this year and is still working with his 1:1 aide that he has had since Kindergarten. "Ms. Jan" does a great job with him. The whole school has been very supportive through some difficult times.
Katie is in first grade and really enjoys school. She is making new friends and has also started Brownies.
Jim is still working and riding as much as he can. He raced in some races and is looking forward to doing more next summer.
I've been enjoying having the whole day to myself with both kids in full day school. I've been taking advantage of the weather and making sure I mtn. bike, road bike, or go hiking every day that I can. Pretty soon it'll be winter and it'll be time for skiing!
I'm signed up to do some substute teaching. Not in a huge hurry to start working. It's nice to sit back and take a big giant breath and think about all we have been through in a year. And think about what we still have ahead.
I'll update the pictures so make sure you take a look.
I hope this finds you all doing well out there.
Thanks for checking in.
Love,
Lynne

Tuesday, August 17, 2004 8:28 AM CDT

As usual, when there is not an update in a while, that means good news.
I'll start out by saying that Grant had his monthly clinic appt yesterday, his counts were great, he got some chemo in his port, got our prescription for steroids for the week, and hit the grocery store on the way home. Yup, you guessed it, all of the staples. Goldfish, pizza and fat cheetos.
Last week, Grant went to "sleepaway camp" as we liked to call it. He left on Sunday, and on Tuesday morning I got a call from Pat Kubicki-the nurse-saying that Grant was pretty homesick. He was off at the lake swimming at the time and when he returned I would speak to him on the phone and decide if I needed to drive up there to get him. Well, Pat called back when he returned and said he was doing great and they would only call me if they needed me. Didn't hear from them again and he had a great time! Returned on Friday looking 3 inches taller, tan and healthy. He had such a good time and made great friends with everyone there. He had the whole lunchroom saying "Wooga-Wooga-Wooga", got to sit on the camp directors lap and drive the golf cart all around the camp, went on hikes, swimming, crafts-the usual camp stuff. He also really enjoyed the singers around the camp fire at night (as he watched from the golf cart!)
One more week and school starts. Grant will be entering 3rd grade and Katie will be in 1st. Hard to believe my kids are 7 & 9! What happened to 2 & 4? Seems like yesterday.
Our next big adventure will be our wish trip to Walt Disney World. I guess they do it all in style, picked up in a limo, staying at a place called Give Kids The World. A whole community in itself-specifically for kids on Make -a-Wish trips. That will happen in October.
Otherwise we are gearing up for school-I'm trying to get things lined up so I can substitute teach a little bit this year and see how I like it.
Katie is doing great-really excited about school. She has a new "Hello Kitty" backpack-what more could you ask for for first grade?
Take care-stay in touch-and I PROMISE my thank you notes are going out this week!
Love,
Lynne

Friday, July 23, 2004 9:06 AM CDT

I have been meaning to update this page for a few weeks now. Just know that when I don't update as often as I used to, things are going well. You can always email me to ask how things are going.....
Grant had his every 12 week spinal tap on July 19 and everything was fine. His counts were good, spinal fluid clear and he received his monthly chemo and the chemo they put into his spinal column. All in all a very uneventful day, which is exactly what we like to see!
I spend 45 minutes on the computer yesterday writing a thank you letter for all who made a donation for our bike ride, came in later and Grant had deleted it. That's what I get for not saving it! So, will continue to work on getting those out today.
Grant had somewhat of an exciting week. On Tuesday, he got to go to ride in some big equipment at American Paving Company. It was set up through a friend of an aquaintance. Grant got to ride in a HUGE bulldozer and operate the knobs, levers and pedals. They moved around some big piles of dirt! Then up rolls an articulating front end loader-again, up he climbed without a backward glance and not only did they move around some dirt-he got to drive down into the "pit" and put 4 or 5 big front shovel fulls of dirt into a belly dumper. Just like the real workers!
And that's not all........on Thursday we set it up for him to go to the Idaho Department of Transportation to roam around the facility climbing in and out of all of the dump trucks, snow plows,Incident response vehicles, crash vehicles, striping machines. He was in his glory. I likened it to a week of helicopter skiing for me. That's how great it was for him. My sincere thanks goes out to Tony at American Paving Company and Dick at the Dept of Transportation for taking time out of their day to bring some joy to a little boy who is all about big equipment.
Grant will go away to Camp Rainbow Gold here in Idaho for a week on Aug 8. It sure will be quiet around here!
I will download some photos from the two big excursions this week so make sure you check out the photo page.
I hope this update finds you all doing well.
We are just contnuing to take each day for what it is. Get through it the best we can. Grant is such a joy, such a blessing and so much work!
Katie is doing so well. She is diving into the deep end of the pool and swimming across! She has bumped up to the next level in her swimming lessons and I think swim team is right around the corner for her!
Have a great day.....
Lynne

Monday, June 28, 2004 9:07 AM CDT

Long time no update huh?
That would be GOOD news!
Things are going well, the last clinic visit brought good blood counts. We were all very happy about that.
Now that we have "come down" off of our high from the bike ride in Tahoe, life is getting a little bit more normal.
Katie is out of school for the summer, so I don't have my mornings to ride anymore. And the evenings are too hot. Anything above 85 is too much for me. And it has been consistently above 80-85-90 for the past 10 days or so.
So I am going to start swimming! I will swim laps during Katie's swimming lessons. I read in a Bicycling magazine that it is good cross training.
Enough about me.....Grant is in summer school-mornings only. He gets home at about 12:30. Sometimes we go for a city bus ride in the afternoon, sometimes we go swimming at the "outside pool", sometimes we hang around the house. Thursday afternoons he rides horses, and I am trying to set up some developmental therapy two afternoons a week.
We are really struggling with his Fragile X issues lately. Changing meds and it has not been pretty. That and the steroid pulses-it can get pretty ugly around here! But he is trying his best, as are we.
His hair is coming in and he doesn't even look like a kid with cancer anymore! It's coming in a little bit curly in the back. He is growing up so quickly, as they all have a tendency to do.
Grant will be attending "cancer camp"-aka-Camp Rainbow Gold just outside of Sun Valley for a week in August. We put him on a greyhound bus with the rest of the campers and away he goes! He will have a one on one aide assigned to him. I also had the bright idea to put Katie in a daycamp for the week here in Boise for that same week. 9am-4pm. Am I brilliant or what! "But Lynne-what are you going to do all day?" you might ask? Who cares!! Ride my bike, read a book, clean the house.
So, we are doing pretty well here. Our next monthly appt (July 12) will include counts at the clinic, then over to the hospital for a spinal tap (those happen every 12 weeks), chemo in his port, and chemo up into his spinal column. Hopefully we will continue to see good counts, no sign of any relapse, and some success with the new meds for his Fragile X issues.
Thank you for checking in. I know there are some people who have contacted me who have signed up for Team in Training to raise money and run in a marathon for The Leukemia/Lymphoma Society. All I can say is GOOD FOR YOU! You won't regret it.
Take care,
Lynne

Thursday, June 10, 2004 9:06 AM CDT

Let me just say that our 100 mile bike ride around Lake Tahoe with Team in Training was THE MOST INCREDIBLE EXPERIENCE OF MY LIFE. And I don't think I'm exaggerating.
What a great weekend. The energy, compassion, caring and love of those 1500 bike riders was amazing. For so many people to come together in such a beautiful place for a common cause was awe-inspiring.
The event itself was very organized with great support (read-food along the way!)
And the Team in Training events were great and ran very smoothly.
There was a mom who stood up at the pasta party Saturday night and told her story. And for every one of those stories, there are hundreds more.
The different chapters had fun with where they were from. The folks from Northern California all had wine glasses on top of their helmets. The people from Las Vegas had-yup-dice. The people from Washington DC had a donkey and an elephant. I think I saw a tornadoe, oh and the group from Seattle had a Starbucks Coffee cup! One guy from our group actually put a potatoe on his helmet.
I just had a picture of Grant on my handlebar stem. (good idea Vern!)
The ride itself was great. The weather was perfect. Jim and I rode with a couple who lives near Lake Tahoe now. We used to race mtn. bikes with them in Arizona. Tammy and Todd. It was so much fun to spend some time together. And we rode at a pretty good pace. Got into some pacelines with some other riders and were going at a pretty good clip into Truckee!
I had some "side pain" issues after lunch, all the way up Spooner Summit (8 mile climb), but would just look at Grant's picture and keep going.
My brother Sean, his wife Stacey and their kids and Grant and Katie and my mom all made it up to the top of Spooner Summit to see us. (mile 88) We got some good photos, and I will post them here when I get them back. There are a few new ones in the photo album. Please go check them out.
We didn't have any mechanicals or flats along the way, so all in all it was a very successful and FUN day! I didn't want it to end. I think everyone could have gone further because it was so GREAT!
Here's the best part........for that day alone, the fundraising done by all participants totaled up to SIX AND A HALF MILLION DOLLARS! Just for that event alone! And there was an event the same day in San Diego (marathon) that raised 12 Million dollars!
So thank you to everyone who donated to us, we raised $10,000 ourselves! Thank you Thank you Thank you!
I will get more photos up, so please check back. And sign the guest book.
Oh-Grant is doing fine. We go in on Monday for our monthly appt. for counts, chemo and start our five days of Steroids.
Thanks for checking in. Can't wait 'til next year!
Lynne

Wednesday, May 26, 2004 1:09 PM CDT

HI everyone,
Things are going along pretty well here. Grant got over not feeling too well fairly quickly. He is back in school, riding the bus, going on field trips, having field day at school etc. The end of the year is never too productive.
Today was Katie's graduation from Kindergarten. Everything went fine.
We have moved on to monthly clinic appointments for Grant. He will have counts done and get chemo in his port that day, and start a five day pulse of steroids. That will continue until October of 2006. With a spinal tap every 12 weeks thrown in for good measure!
Tahoe is just around the corner. If you haven't sent in your donation yet, it's not too late!
My mom is here visiting and to help out with the kids in Tahoe, so Jim and I will actually get to ride TOGETHER before the actual event on June 6. We rode together yesterday, a nice 45 mile spin from the house.
Now that Grant's health issues are into a maintenance program, and life is getting back to "normal" (whatever THAT is)...we are dealing with his Fragile X issues. Lots of behavioral problems. Just when we think we have it figured out (new meds...doses etc.) we have to do a pulse of steroids and it all falls apart. (steroids wreak havoc with his moods....) So, never a dull moment here in the Pekuri household! Don't be shy-sign the guestbook. It doesn't have to be profound, just say hi!
Thanks for checking in.....
Lynne

Tuesday, May 18, 2004 12:26 AM CDT

Grant had his clinic visit yesterday morning and all went well. His counts were great...Anc of 1400...so that was good. We were really happy to see that.
He received his dose of Vincristine in his port and we picked up the Steroids at the pharmacy.
The rest of the day was pretty uneventful, we went to the park for a little while and played in the back yard, watched for the mail truck etc.
This morning Grant woke up and came downstairs crying and told me his legs hurt. That's pretty unusual for him, especially lately. My first thought is that it's the Vincristine.
A little bit later he was doing better, but I decided to keep him home from school. It's a yucky rainy day anyway.
Then a little bit later, he went to the bathroom and threw up! Which is REALLY unusual for Grant. This was only the fourth time in eight months of treatment. Just not like him.
I blame it on the Vincristine (it was upped a little tiny bit yesterday), but the nurse says it's more likely the start of the steroids. I still think it's the Vincristine.
Oh well, so he is upstairs sleeping in my bed now and hopefully he'll be feeling better when he wakes up.
Everything else is ok.
Lynne

Thursday, May 13, 2004 1:22 PM CDT

A pretty quiet week or so. Except for Tuesday night when I woke up to the sound of Grant's croup-y cough. That croup is so scary, especially at 1am!
We called the onc on call and she said to give him some steroids and that should help settle him down. Along with the humidifier and cool air. Grant was able to calm down and fall back to sleep for the rest of the night.
Last night he was up with just a regular cough and a lot of congestion. Needless to say, he is home today.
The first sunny day of the week, and I can't go riding! But that's ok, I rode the trainer and Grant is a lot of fun to have around.
Last week was a big event-some of you may have heard about the ride in the "Semi tractor-trailer". It was all arranged for the truck to pull up to Grant's school at 1pm last Thursday and take him for a ride. Katie, Ms. Jan, and I all got to go too! If you've never ridden in an 18 wheeler-it's really great! I got some pictures and will post one on the website. His next request is a ride in a garbage truck. I'll let Jim take him on that one.
Tahoe is right around the corner and I must say I think we will be ready! The fundraising has been a phenomenal experience with Grant responsible for raising over 25,000 dollars. Yup, you read that right. $25,000. Great huh? Thanks only to all of you out there.... and me....for asking. :)
We go on Monday for counts, chemo and the start of a five day pulse of steroids. I will check in again with results of the day.
I hope this update finds you all well out there, and thanks for the continued support and well wishes. Grant is doing so well, but there is the underlying current of "anything can go wrong at any time...." So keep us in your prayers.
Thanks.
Lynne

Saturday, May 8, 2004 8:20 AM CDT

I just realized that I did not update Grant's journal after our last clinc appt.
The last appt was last Monday. We only went in for counts. Everything looked great! Grant's ANC (overall ability to fight infection) was 1100. Right where the doctors like to see it. The only thing that worries me is that Grant's chemo was reduced about 6 weeks ago to get the ANC to come up. Well, the ANC is up, and the chemo is still down. He is on 80% of his methotrexate (weekly) chemo, and 60% of his 6MP (daily) chemo. It's so hard as a mom! When they want to put all of this poison into your child, you wonder.....
Then they want to reduce the amount of chemo and you wonder......sigh.
The doctor explained it like this-Grant's system is not what it was 8 months ago. He doesn't need as much chemo to do the job it has to do. His bone marrow was completely wiped out for a long time. The amount of chemo he needs will probably change over time. All kids are different.
Our next appt is a week from this coming Monday. That will consist of counts and chemo (Vincristine) in his port, and start a 5 day pulse of steroids. Oh Joy.
We are looking forward to Tahoe and the bike ride. I think the first time Jim and I will ride together this year will be at the Tahoe event. Babysitters are hard to come by with all of our "issues". People are willing, but I'm picky.
That's all for today.
Keep us in your prayers, thoughts and best wishes. We are getting through this. Hard to believe it has been almost 9 months. Should be a happy Mother's day!
Lynne

Saturday, May 1, 2004 7:36 PM CDT

All goes well. Except that Mommy forgot Grant's chemo last night. The doctor said to just give him one and a half pills tonight and one and a half tomorrow night to catch up.
Grant has a doctor's appt on Monday the 3rd just for counts. We are hoping that all will be well.
He has been attending school all day, it's hard for him, he still gets tired, but he does it. What a champ. His school did a fundraising program called "Pennies for Patients". The kids in the school emptied their piggy banks, did chores around the house and the neighborhood, donated it all and raised over 1,100 dollars! Wow! The winning class gets a pizza party-it's one of the other second grade classes, and the first thing they said was..."Can Grant come to our party?" What a great show of support!
I will update again next week after the doctor's appt.
Thanks for checking in.
Lynne

Tuesday, April 20, 2004 4:50 PM CDT

Hello Long Term Maintenance!!
Grant has successfully gone through Diagnosis, Induction, Consolidation, Interim Maintenance I, Delayed Intensification, Interim MaintenanceII, and now the last phase of treatment-Long Term Maintenance. This one will last two and a half years.
It's hard to believe how far we have all come, and sometimes harder still to think of how far we have to go.
We still worry, we're still scared it will "come back", and it may. But it hasn't today, and we can only hope and pray for tomorrow.
As you may know, grant's counts have been a little low for the past two weeks. "They" (docs and nurses) lowered his dose of daily chemo in the hopes that they would rebound. After one week they didn't come back up as much as they had hoped, so they reduced the chemo a little more, and by yesterday his counts had come well above the mark they wanted so they could proceed with the spinal tap and chemo yesterday. Grant did OK, was not too happy waking up. Worse than usual, but we both got through it.
He stayed home from school today. I usually cut him some slack the week he has a spinal tap. The poor guy goes through so much, let him be lazy once in a while.
So, his spirits are up, and so are ours. The doctors and nurses are all so pleased with Grant's progress through treatment. Let's all hope and pray that it continues this way.
That's all for now.
Again, Thank you to all of you who have helped us with our fundraising efforts. I still think I should list all of the names. Maybe in our letter I'm hoping to send out after the event to let you all know how it goes. We're hoping to get Grant and Katie to join us in the last mile or so of the ride and cross the finish line together.
Hope this update finds you all out there well.
Lynne

Thursday, April 15, 2004 9:27 AM CDT

I know, I know, I haven't been updating as much as I should. Well, I've been busy......riding! Yup, lots and lots of riding. Usually 4-5 times a week now. Road and Mtn. Getting a new "groupo" on my road bike. Tired of my Suntour Automatic SHifters, when you least expect it. Like when you are standing for a climb, that's always fun!!
Grant went to the clinic for counts last monday and they are not coming up as high as we want them to. We're looking for at least 1,000 ANC. They only rose from 600 to 700. So, cutting the chemo a little more this week. If they are not at 1000 on Monday, we can't do the spinal tap. Sometimes the kids have to go off the chemo completely for the counts to recover. The nurse practitioner said they are not at all concerned that the counts are low, they see this all of the time. So, if they're not worried, neither am I! (yeah, right)
Our weather has changed drastically-it's cloudy and cool. A little bit of rain last night-perfect for a mtn. bike ride. The spring wildflowers are out and the sagebrush smells so good after a slight rain, and the trails are perfect.
Plus, I got a new "hydration system" that I want to use!
Grant is at school every day now, still riding the bus. WE are trying a new med for his Fragile X "issues". Hopefully we will see some difference in his distractiblity, ability to focus, staying on task, frustration level, high energy etc. This is our first time trying a med in this class. The med is Strattera-kind of like Ritalin, but NOT a stimulant. It's the med that the FX doctors at the MIND Institute at UC Davis is recommending for most of the FX kids. So, we'll see!

Thursday, April 8, 2004 4:08 PM CDT

I know, I know....a long time since the last update.
Like I said in my cycling journal, we had company. Enough said.
Grants counts (ANC) two weeks ago were 1300 (oncs like it at 1000-1500) last monday they had dropped to 600. Below 500 and no school. So, not sure what is causing it. He may come down with a cold or virus and then we will know. If he gets a fever, we'll have to go to the hospital with his ANC so low.
Otherwise he is doing pretty well. His hair is coming back in, very blonde and his scalp is getting tan! School is going well, as is riding the bus to and from.
We will go to clinic again next monday to check counts again, then a week after that is another spinal tap.
Since his counts had dropped so much, we had to cut back on the chemo. THAT worries me. He is still getting it every day, week, month. But cut back on the dose of his 6MP from 75mg to 50 mg. Not a huge drop, but enough to worry mom. Jim is going to get me a T-shirt that says..."See, worry works. 99% of what I worry about never happens!"
Thank you everyone for the contributions to our fundraising. It is going amazingly well, and I am sending out thank you postcards....so look for them! They're hot! But you can't have one unless you send a donation!!!
Lynne

Monday, March 29, 2004 8:36 PM CST

Hello Monday after Spring Break!!!
Don't get me wrong, I love my kids, love to spend time with them, love tending to every need, but it's nice to have them back in school.
Today was a big day, Grant went to school ALL DAY. He came home on the bus again. He did it Friday before Spring Break, but it was an early release day, so didn't stay all day. Today was all day-right to 3:15. He has never done that. Before he got sick, I would pick him up at 2:45 to take him to behavioral therapy by 3:00-which he would attend until 6:00. A very long day for a very hard worker. Well, since leukemia, we've backed off, and it's something I feel good about. He is so excited to ride the bus home!
Yesterday was the firetruck ride. It went well, all four of us got to go, a first for all of us! When we got back to the station, we got out of the truck and I said to the Batallion Chief..."Can we borrow this thing to go back east next summer?" Grant would love that! The kids both got a Boise Fire Department T shirt and they both wore them to school today. I emailed the photos to Grant's one on one aide and she printed them up for all of the class to see. Very exciting. When we were driving home from the ride, Jim and I were talking about selling our old Jeep Cherokee and getting a little pickup and Grant chimed in...."I know, sell the Jeep and let's get a firetruck!" No kidding.
No doctor appt. for Grant this week, next Monday. My little brother Sean will be here with his two daughters (mommy is staying home in SF for a weekend off!), so Sean will get to see where Grant goes to the clinic, meet the docs and nurses etc.
Grant is still pretty tired, and napping almost every day. Otherwise everything is going well.
Thank you ALL who have donated to our fundraising goals. It is very heartwarming to know that so many people care.
Lynne

Wednesday, March 24, 2004 6:27 PM CST

Wow, Wednesday already. Like I said in my cycling journal, today was my first day to ride.
Grant had his monthly spinal tap yesterday. I was a little bit worried this time. I usually don't even consider the possibility that they could find some "suspicious" looking cells in his spinal fluid. Well, it CAN and DOES happen, as our friends in California can attest to. Their little guy is Spencer and is being treated at Stanford. He was diagnosed only three days after Grant and relapsed in his spinal fluid about a month ago. They were in for their routine spinal tap and there it was. Very very real and very very scary. They will be going to Duke for a cord blood transplant. Spencer's website is caringbridge.org/ca/spencerrocket
He is the cutest thing, with and without hair!
So, no word yesterday after the spinal so all should be clear.
Grant also got some heavy duty chemo and started on his steroids. They haven't really kicked in yet as far as the appetite goes.....just waiting for that. The first request for the drive through at Popeye's chicken usually marks the beginning!
That's about all.
Thanks for checking in. I know people are checking in, because the counter on the main page keeps going up, but not everyone is leaving a message! But that's ok. Sometimes it's all I can to do update the journal.
I'll put some new pictures up now too.
Keep us all in your prayers, thoughts and good vibes.
Lynne

Saturday, March 20, 2004 8:58 AM CST

I just had a lightbulb moment....only it was a BAD lightbulb moment. We forgot to give Grant his chemo last night. He takes pills, but it has to be on an empty stomach. And considering he snacks pretty late into the evening, Jim and I just wait until we go to bed a little bit later-10:00 or so and we wake him up and give him the pills. Well, last night we forgot. It does happen sometimes, but we definitely cannot make it a habit. So, my next phone call is to the "Onc on Call" to find out what to do.
Another beautiful day here in Boise. Up to 70 degrees today. Grant is walking around saying "What are we going to do today?" Most likely a bike ride along the Greenbelt-which is along the Boise River to a small market and the kids get a treat.
Katie has a birthday party to attend and I will probably take Abby for a hike.
I rode again yesterday-that's three days this week! I will update my "cycling log" next.
Grant is doing well, and we will enjoy this weekend and Monday because Tuesday is the spinal tap and all of the chemo he gets and starts the steroids.
Enjoy your weekend and I will update on Tuesday.
Lynne

Tuesday, March 16, 2004 11:40 PM CST

Well, it's late Tuesday night. Everyone is sleeping. Except for me. It's my only time to update the webpage and check email etc.
Grant has been to school both days so far this week! Two for two! A record! He may even make it all five days this week.
We are a little bit concerned that he is still so tired. He still wants to take a nap every day after school. I pick him up from school at 1:00 and by 2:00 he is saying "I'm tired mom, let's go take a nap"
I talked to the nurse and he said that at this stage of the game, Grant shouldn't be quite so tired. But we have been getting outside a lot more. Riding bikes, hiking, playing in the park. (I know you people in the Northeast don't want to hear that right about now!) He also has quite a few bruises on his arms and legs. Only the mother of a child with cancer knows what I am worried about. I will always worry about the dreaded "R" word. Relapse. The nurse said that if by Thursday he is still tired and I am still worried (when will I NOT be worried?) then they will want to see him and check his counts.
Our next procedure is on Tuesday the 23rd. Sometimes even a week is too long to wait. So we shall see.
In the meantime, we are enjoying the beautiful springlike weather, knowing that we could still get a blast of winter from mother nature.
Thanks for checking in. Think of me out there riding. It's hard work, but in a beautiful setting.
Lynne

Saturday, March 13, 2004 8:31 AM CST

Grant missed a lot of school again this last week. He only went back on Thursday and Friday. His cough was still so bad, I didn't want to send him. But he did OK those two days. Friday was a field trip and his one on one aide was going to be absent, so I said I would go along with the sub.
Well, the sub canceled, so it was a good thing I was there. Got to ride the school bus and everything! (along with a big giant Tylenol!)
We have the people from Make-a-Wish coming over this morning. They have to hear the wish directly from Grant. I've been coaching him......."I want my mommy to go Hel-i-copter Skiing in Can-a-da"...Ha ha Ha.
Disney world is a good option. But pretty long way away for us. Sea World is an idea, Grant has been showing interest in Whale Watches and sharks and fish etc. And they have the San Diego Zoo and all of the wildlife parks etc. We'll also talk about something to do with big construction equipment. But not sure how it will all work out. I'm still pulling for the helicopter skiing!
Tonight is the Monster Trucks in one of the venues here so Jim and Grant may go, along with hearing protection!
We will both get out to ride today, but not together. The weather is going to be sunny and in the mid 50's.
Maybe skiing tomorrow.
I'm going to be donating blood with a procedure called Apheresis-(pronounced A-fer-eesis). That is a procedure they use to separate out the platelets and some of the plasma from your whole blood and return the rest back to you.
So we are just plugging along, getting through all of this. Grant's next procedure is on Tuesday the 23rd. During Spring Break. So that's good, he won't miss any school that week.
Have a good day, sign the guestbook, even just to say hi. I'll try to get some new photos.
Take care,
Lynne

Tuesday, March 9, 2004 10:22 AM CST

Hi,
Grant had a Dr.s appt yesterday. Monday's are the day we go to clinic. His counts all looked good. Most stuff on the rise and within the almost normal range.
One thing the Dr. and I talked about is doing a second "Delayed Intensification" That is the two months of treatment that Grant just went through for Jan and Feb. Kind of known as being very difficult, lots of chemo, high doses, lots of clinic visits, hospital visits etc.
Dr. Johnston said basically that there is a 95% chance that doing a second DI won't make a difference in Grant's outcome. So you have to weigh that against all of the chemo he would be on again, which could damage his heart, cause liver failure, kidney failure, drop his counts again and be suseptible to any and all infections, high doses of steroids which can cause pancreatitis and a lot of pain and discomfort.....what to do? These are the kinds of decisions we have been faced with. Dr. Johnston said if it were his child, he would opt to not do a second DI. And he understands because his son also had ALL Leukemia. So he really does understand what we as parents face. So, I worry if Grant does not get a second DI, and I would worry if he did get a second one. You just have to make a decision and stick with it. And know that you made the best decision you could based on the information you have. Which unfortunately is not being able to predict the future.
Grant is still home with his cold. Just a lingering cough now, and he will probably go back tomorrow.
His next spinal is scheduled for the 22nd of March (monday).
He will get chemo up into his spinal column, chemo into his port, and start another 5 day pulse of steroids. So we have roughly two weeks of him feeling OK, then that day will put him down for 3-4 days. Then we repeat that cycle again in the end of April.
We are enjoying a week of early spring here in Boise, the crocuses are blooming and so is Grant's hair!! It is really starting to come in and he is very excited.
Have a good day, don't be afraid to sign the guestbook and just say hi! I know people are checking in, because the number of hits on the website goes up, but not too many people are signing the guestbook!
Lynne

Thursday, March 4, 2004 7:43 AM CST

Good morning!
Grant was up early today. He has a cold and is having a hard time sleeping.
I kept him home from school yesterday and he'll be home until this cold is gone. I used to worry about infecting other people, now I worry about some other virus/bug/infection he could pick up while his defenses are down fighting this cold. I'll call the clinic today to find out if they want to see him. Probably not, unless there is fever, and there isn't, yet.
He did great going back to school this week. He says "Mom, I have to see my kids!" That is how he refers to his friends and classmates. They all just love him. He is so special.
It has been a "SpongeBob Squarepants" Marathon around here-all day yesterday and already this morning. Gotta love those DVD's!!
I'm still riding my bike 3-5 times a week inside. The weather has been typical March weather for a few weeks now! The fundraising is going well. I had to order more letters to send out as I have sent all 200 already!
To those of you who have donated-THANK YOU! I want to thank each and every one of you personally, but probably won't be able to. I have some email addresses and will try to do that. Every little bit helps and it is all adding up. If you have not received a letter-let me know!
Have a good day everyone, time to get Katie ready for school.
Lynne

Saturday, February 28, 2004 11:52 AM CST

Today is a big day for us.
Grant is a six month cancer survivor.
At 12:30 pm, our lives changed. The (he was not yet "our") oncologist sat across from Jim and I and spoke the words no parent ever wants to hear...."I'm sorry, Grant has leukemia."
This was definitely a defining moment for us. I remember just feeling a buzzing all through my body, I put my hands over my face and sat down, not really feeling the chair under me, or hearing the doctors words. The my cell phone rang. It was my little brother in SF calling to get an update on the dr.s visit. I had been in touch with all of my siblings and my parents througout the morning, as the Dr. said he didn't think it was leukemia. Then he went to look at the smear of blood on the slide under the microscope.
Then I had to call my mom, and my dad, and my other two brothers. It's hard for a parent to tell their parent that their grandchild has cancer.
It took a few weeks, but I was able to eventually utter the sentence "Grant has leukemia" without breaking down. But telling people was my therapy. The more people who knew, the better. They would help my carry this burden, because I couldn't do it all by myself.
We have been through so much these last six months, and it could have been worse, a lot worse. So we count our blessings. And we continue to hope for the best and prepare for the worst.
Meanwhile, Grant is getting through this, as are we. I wish I could take it away, the pain, the suffering he has to go through, but I can't. So I will rub his back when it is sore from a spinal tap, massage his legs when they ache from the Vincristine, hold him close when his tummy hurts from the steroids, and sit with him by the toilet when he is feeling sick.
He is the hero through all of this and never ceases to amaze us with his courage and strength and positive attitude. What other kind is there when you are a kid, and don't really understand what it going on.
So, onward we go. Our end date of chemo is slated for October 27, 2006. Grant will be 11 and in fifth grade. Hard to believe.
Thank you all for your encouragment, support, prayers and love through a very tough time for all of us.
Check back in, I'm changing photos around again. I took a great one of Grant and Abby out on our hike today.
Have a good day, and stay in touch.
Love,
Lynne

Friday, February 27, 2004 12:20 AM CST

Grant finally made it to school yesterday. Wasn't sure it would happen. But I told him even if he doesn't go to school, I had to go there to pick up some paperwork, so he had to get dressed and come with me. Then it was time to go out for the bus, and he came out....and the bus was coming down the street.....and he looked at me and said.."Mom, I'm going to ride the bus today." So off he went.
His one on one aid called at 9 and said he wasn't feeling so well-he had "the look" on his face. Upset stomach/hurting stomach (most likely from the steroids this week). But we gave it 20 minutes and it passed! He had a good day, considering he has to get used to being there every time he misses school.
He went again today, with a little bit of anxiety about it, but is doing fine. I will pick him up after lunch and recess.
I donated blood today for the first time. It was a piece of cake! I recommend it to everyone. Also a program they have called "Apheresis". This is when you donate platelets. Platelets are apparantley pretty important in the whole process.
So, have a good day. Thanks for checking in.
Oh-new photos. Some of you will recognize the family photo as our Christmas Card of 2003. It was taken about 3 weeks before Grant was diagnosed with leukemia.
Lynne

Wednesday, February 25, 2004 12:37 AM CST

Well, today is Wednesday, and I thought for sure Grant would be back at school. But no. He is still not feeling well after getting so much chemo on Monday. I also think that the chemo he is getting at night is making him pretty nauseaus in the mornings. He is still saying that his back hurts, and I can give him Tylenol or Ibuprofen and that seems to help. He just isn't up to being in school.
All of his friends and teachers miss him and are anxious for him to come back. I don't want to push him to go if he is not ready, but there is a fine line there........
He is upstairs sleeping now, as he has every morning at about this time. Then he sleeps 12 hours each night. Poor little guy. It is so hard to see your children suffer.
Still working on new photos. Thought I would put one of the whole family up.....but that would mean that I would actually HAVE a photo of the whole family......
Take care,
Lynne

Monday, February 23, 2004 3:24 PM CST

Hello Everyone,
Today was the beginning of Interim Maintenance II for Grant.
We went to clinic, had his port accessed, did blood counts and went over to the hospital for a spinal tap and chemo.
He was a little bit anxious, as he tends to be during these treatments, but we got through it. The spinal fluid looked clear, but they always send it to the lab to be analyzed.
We went through the McDonalds drive through on the way home, he is upstairs resting now.
His counts were OK. His ANC (overall ability to fight infection) was down to 800 (from 1200 last week). Nothing to be too concerned about, but something to keep an eye on. Which can only be done when we have counts done again! We wash our hands A LOT around here. But his hemoglobin and platelets were up and that's good.
So we will now do daily, weekly and monthly chemo. And a 5 day steroid pulse every four weeks.
I just can't believe 6 months has passed since Grant was diagnosed. We are all so grateful that things have gone so well for him.
I did my first "outside" bike ride on Saturday, preparing for the Lake Tahoe Century. We did 27 miles. It was a little bit cold, but my feet weren't any colder than when I am skiing!
The pledge forms are starting to come in, and I am touched by the thoughtfulness and generosity people show. Speaking of that....I have a friend from childhood, who I have lost touch with over the years, and we have been able to keep in contact since Grant's diagnosis. Well, she just called and is doing the Lake Tahoe ride for Leukemia/Lymphoma Society Team in Training from her hometown in New York. Her generosity and commitment to do something that will make a difference is inspiring!! And boy will we have time to catch up! 100 miles worth!
Grant may or may not go to school tomorrow, depends on how he feels.
Thanks for checking in, and I know I am due to put some new photos up.
Lynne

Wednesday, February 18, 2004 9:41 AM CST

I just wanted everyone to know that Grant went back to school yesterday! His onc gave him the go ahead. His ANC was high enough that if he is exposed to any viruses etc. he would be able to fight them off......
He wouldn't ride the bus....gets sort of anxious about stuff like that (due to Fragile X), so I drove him, his one on one aide met us at the door, we walked down to his room and I let him het acclimated before all of the other kids came in. He was able to watch them out on the playground and he likes that.
He stayed until lunch. I go into the lunch room to pick him up and there he was, bald head a-shining among his peers, not a care in the world! He did great, and we are all proud of him.
He talked all day yesterday about riding the bus today, but when push came to shove, it didn't happen. I was not prepared for that, so I drove him to school and walked him inside...in my slippers (at least I put some sweats on and wasn't in my jammies!) He transitioned very well and was glad to be there. He is a very important part of his classroom community. There has been so much support there, and in the whole school.
That's all for now.
I want to encourage you all to donate blood if you never have, or if you haven't in a while. I never have, and have my first appt next week. Just call your local red cross.
Time to go get on my bike......
Lynne

Monday, February 16, 2004 7:24 PM CST

Hello,
Today is Monday, and that means clinic day.
We went this morning, Grant had his port accessed and counts done.
Everything continues to go so well.
His ANC (overall ability to fight infection-oncs like to see it at about 1000-2000) was 1200 today! WAY up from 75 last week. You know what that means.....back to school!!!
The only thing I worry about is that his hemoglobin is still low at 7.6 Last week it was 7.4 I didn't ask specifically why it isn't coming back up, but his white and red blood counts are still low too.
With low hemoglobin, he will tend to be tired, maybe some headaches etc. We will keep an eye on that and just go day by day, as usual.
Grant has been complaining about back pain, which had me worried. You know what a mom automatically thinks....the "R" word...(relapse). Our onc said no, probably just the bone marrow cranking back up, maybe some residual pain from the last spinal tap. And you can never really tell with Grant. Sometimes he will just get a phrase or sentence in his head and says it over and over-called "perseveration".
We went to the dump today, just because. Saw lots of loaders, bulldozers, crushers and of course garbage trucks.
So, maybe school tomorrow, only half day to start. It all depends on how he feels. He is excited to see his friends and ride the bus. Everyone at school is excited to have him come back.
The plan for the next few months is, spinal tap next Monday with chemo, chemo in his port, start a steroid "pulse" (five days). Then another spinal in four weeks and another four weeks after that then the spinals go to one every twelve weeks. Continuing the daily, weekly and monthly chemo, and the steroid pulses (five days of every month) for the next two and a half years, if all goes well. Which it will.
If anyone has any questions about the Team in Training info I sent out, please email me to ask....if you didn't get the info, email me to ask about it!!!
That's all for now, thanks for checking in.
Lynne

Thursday, February 12, 2004 9:34 AM CST

We are so lucky that Grant continues to do so well.
He has been just hanging around the house this week, watching lots of movies on his NEW DVD PLayer!! He loves it.
We rented Scooby Doo-the movie, and for any of you familiar with it, the "Farting-Burping" Scene between Shaggy and Scooby is Grant's favorite.
He plays it over and over and over. And man does he laugh!! Belly laughs, rolling on the floor. It is so good to see.
No fevers so far, taking a nap each day, but not excessive sleepiness, no complaint of headaches, lightheaded etc. So, I think we may get through the week without a transfusion.
I will probably take Katie skiing this afternoon. My mom is visiting from out of town, so I can get out of the house!!
We haven't been skiing in almost a month, and that is way too long!
Grant's next appt is on Monday, we will have his port accessed and do blood counts. No chemo for another week. Then if his counts are good the following week, we start the next phase of treatment, which is Long Term Maintenance. (there may be an Interam Maintenance first-I'll clear that up with the onc when we see him on Monday)
So, nothing exciting to report, which is good. I really like boring!
Have a great day!
Lynne

Monday, February 9, 2004 12:28 AM CST

Just got home from our Monday morning clinic appt. Blood counts and exam by Dr.
As we expected, Grant's overall ability to fight infection (ANC) was very low. 75 to be exact. "Normal" counts are anywhere between 1,000-2,000. Or somewhere in there. So, VERY susceptible (sp?) to infection. Cannot go anywhere, unless it has a drive through.
He was on the fence with his Hemoglobin counts. They like to transfuse at about 8.0, and Grant's was at 7.4 today. Not really critical, but low. We (I) decided not to do the transfusion today. The onc thinks that with a two week break from chemo (starting today), that his counts will all return to near normal on their own. The thing to worry about with a low hemoglobin count is (are) headaches, fatigue, listlessness, lightheaded. So, if Grant is complaining about headaches, sleeping all day, dizzy etc. We can go in later this week and do the transfusion. I was kind of hard pressed to give up his mid morning naps! It's so peaceful around here then! Just kidding, of course.
Grant threw up yesterday for only the third time during this whole ordeal.
His appetite has really dropped off. He is existing on Pepperidge Farm Goldfish only.
So, that's the report for today. The Doctor is very pleased with how well Grant is doing. I try to remember to take each day as it comes, and try not to look at the BIG picture. Too scary.
Talk to you soon.
Lynne

Thursday, February 5, 2004 12:10 AM CST

HI,
Thought I would do a quick update.
Grant just received his last dose of ARA-C. This is the chemo agent that has really wiped out his reserves.
The home health nurse just left after giving him the chemo and de-accessing him. (taking the needle out that has been in his port since monday-covered by a bandage of course)
Grant gets pretty upset, anxious, nervous, scared when it is time for the needle to come out. But we get through it.
Although, when his tears were dripping down on to his chest, that just about did me in! It just breaks my heart to see him go through so much. Way more than ANYONE deserves.
He's fine now, ready for a nice long nap.
All is going pretty well. No fevers, no vomiting, no middle of the night trips to the hospital at 90 MPH. Let's keep our fingers crossed and keep those prayers coming!
My mom is coming to visit on Saturday, for 10 days. It will be so nice to have someone else cook dinner. And I'll be able to get out of the house during the day. What a treat!
Thanks for checking in.
Lynne

Monday, February 2, 2004 3:33 PM CST

We went to the clinic today. Had his counts done and his ANC (overall ability to fight infection-the docs like it at around 1000) dropped from 3000 last week to 567 today. Very much expected. Grant received his dose of ARA-C (chemo) at the clinic, then we came home with his port still accessed. The home health nurse will come Tues, WEd and Thur to administer the chemo and de-access him on Thur.
He is upstairs sleeping now, very tired. As he fell asleep he said...."I love my port access". Which really doesn't make any sense, unless you know Grant and understand his language all relating to Fragile X. What a guy. Talk about a hero.
Starting next Monday we have a two week break from chemo, then if his counts rebound (doc expects an ANC of zero next monday, and probably needing a transfusion of platelets), we start what is called Long Term Maintenance.
Still daily oral chemo, and weekly chemo, and monthly chemo, and steroid pulses and one spinal tap every twelve weeks. He will officially (if all goes well, with no delays due to low counts, infection etc) be done with chemo on October 27, 2006. He will be 11.
Thanks for coming by, hope you are all doing well.
I sent out the Team in Training pledge forms/tear jerker letter today. If you don't receive yours, or don't think I have your mailing address-please let me know! Every little bit helps!
Jim and I are raising money for Leukemia/Lympohoma Society by participating in a 100 mile bike ride around Lake Tahoe in June. My butt is tired just THINKING of all of the training we will have to do. But it's a picnic compared to what Grant is going through.
Lynne

Saturday, January 31, 2004 10:00 AM CST

Happy Saturday everyone,
We all slept in this morning, but considering grant was up until almost midnight........
He had a nice long nap yesterday afternoon. He says to me-"Mom, let's go get cozy in your bed". But usually it is in the morning at around 10. But yesterday it was late..about 2-4:30. I really think it is important to let him sleep and rest as much as he can. And if he stays up late, no big deal, he's not going to school now and can sleep as long as he wants to in the morning.
He is still a bit nauseaus in the mornings. Still hasn't actually thrown up though. Makes a few trips to the potty, and we have a little chair set up for him in front of each toilet.
Kind of overcast here today. I may go skiing tomorrow and will probably have to take Katie. That's fine, she's a lot of fun to ski with. Her new favorite run is called "Snoozer".
Jim's co-workers all passed around a card for Grant and took up a collection. It wasn't for any special reason, they just said they wanted us to get him something he really wants. I'm thinking digital camera....hahahaha.
No, but I think Jim and I are going to go out and look at DVD players. Grant has a small TV/VCR in his room that actually belongs to Lois (Jim's mom) and she sort of wants it back in her room. I was always adamant (sp?) about no TV's in the kids rooms, but that was BC (before cancer).
So, we'll get Grant a little set up for him. But with the DVD player you need DVD's so maybe we'll get a few favorites for him.
That's pretty much it from around here. We are so thankful that things are going so smoothly for Grant. The doctors could not ask for a better patient. I'm just keeping my fingers crossed that things continue to go so well.....
Have a good day!
Lynne

Thursday, January 29, 2004 9:24 AM CST

Good morning,
All is well here.
Grant is tolerating the daily doses of the chemo called ARA-C. we have had the home health nurse come each day at 4 to administer it. I could do it, but don't want to. Besides, I'm not his nurse, I'm his mom. Plus, with Fragile X, you never know when he will get really anxious and he would need two people, or if there was not a blood return with the port. Today is the last day and he is de-accessed. I have heard that the ARA-C has a cumulative effect, so I'm not sure what the weekend will bring. Then on Monday we go to the clinic, have his port accessed again, do counts, do the ARA-C there and come home with it accessed and do the next three days at home again.
He's pretty nauseaus when he wakes up, I think from the 6TG he takes at night (another chemo agent), so I give him Zofran (anti-nauseau), and then again 6 hours later just before we do the ARA-C and that way we can stay on top of feeling sick. It seems to be working. He and Katie were playing around last night, running around the house......it's pretty nice to see.
Raining here in Boise. Has been for a few days and will for a few more days. But snow on Bogus Basin-our ski mtn.
Trying to get on the bike trainer each day for an hour, doesn't always happen, but the bike ride is not until June. I will be mailing my Team in Training letter/information and pledge forms soon.
Thanks for checking in....I call him Mr. Clean now. He is getting SMOOTH bald and is so beautiful.
Take Care,
Lynne

Tuesday, January 27, 2004 11:54 AM CST

Well, it happened yesterday! I was SURE his counts would not be high enough to start the next phase of treatment. And they were. What a great little immune system he has!
His overall counts had to be above 750, and they were 3000!
I almost fell out of my chair when the nurse brought me his CBC results!
So, over to thehospital we went. We went straight to PICU to prepare for the spinal tap.
That went fine, except for the fact that Dr. Johnston (our onc) was hanging around! He in NEVER there for the spinals. We usually do counts and see him at the clinic, then go across the complex to the hospital for the spinal and the nurse practitioner (Pat) does the procedure. Well, I stepped outside to make a few phone calls, and it dawned on me that Dr. Johnston was "lurking about". What went on in my mind was that he had seen something in Grant's bloodwork that concerned him and he wanted to see the results of the spinal. I was so scared in those 5 minutes it took me to go back to the PICU. I was SURE Grant was relapsing. Well, the crazy mind of a mom who has a kid with cancer will think all kinds of things. Turns out that Dr. Johnston just wanted to make sure Grant's admit to the hospital went smoothly. They usually do an overnight admit for this procedure, and Grant was the first one to do just a daytime admit, to go home in the evening. Whew.
So, we got home at about 8pm. Grant did great. He received a chemo agent called Cyclophosphamide (sp?), and that didn't take long. But after getting that, he has to receive what is called a "rescue". The CPM can cause hemmoraging of the bladder. Wonderful. Then he got his ARA-C, and came home with his port accessed and the home health nurse will come here for the next three days to give him his dose of ARA-C. That's a pretty tough one, and usually makes the kids pretty sick. He also started an oral chemo agent called 6-TG, taken at night. They are all so powerful, and so effective in killing all of the cancer cells, and what is so scary is the side effects. Liver failure, kidney failure, heart damage, sterility, the list goes on and on.
He is upstairs sleeping right now. I am getting my Team in Training letter finished up so I can get it out in the mail this week. Oh! Don't know what it is? Email me and I will fill you in.
Thanks for visiting and for reading......
Lynne

Sunday, January 25, 2004 10:14 PM CST

Well, today was the big day to go see "Riders in the Sky", that is the band that plays some of the songs in Toy Story 2.
Everyone was very nice and so accomadating. I lined it all up with the radio station and with the person who is in charge of the venue.
We didn't think Grant could handle the actual concert (crowds and FX-germs and cancer) so we arranged to go when they were doing their soundcheck.
We got to meet the band...."Woody Paul"..."The Cowpolka King"...."Too Slim"....and "Ranger Doug". They were not in their performing attire but that was Ok with us.
They came out into the audience to say hi, after Jim gave them a heads up on the FX and anxious behavior. They all said hi, and were very understanding that Grant had a hard time making eye contact and saying hello. But as they were walking away to go back up on stage to warm up, Grant blurted out "Hey! I'm bald!" and Too Slim (who happens to be grant's favorite turned around, took off his baseball cap and said "Hey! Me too!" and indeed he was! Grant got such a kick out of that. We assured the band that even though Grant was having a hard time, this was all he would talk about for weeks to come. (we were right..)
The band then went back up on stage, did a nice long warm up and were sure to include all of the Toy Story favorites.
Grant enjoyed it so much, as did Katie, Jim,Lois (Jim's mom) and myself.
Tomorrow may or may not be a big day for Grant. We will go to the clinic, have counts done and if they are high enough, be admitted into the hospital for the day to begin the next phase of this two month treament. If it happens, he will get a spinal tap with methotrexate (chemo) up into his spinal fluid, and start three new kinds of chemo. I will write again tomorrow and let you know what happens.
Thanks for visiting.
Lynne

Sunday, January 25, 2004 10:13 PM CST

Friday, January 23, 2004 9:40 PM CST

Now that we have had a few days to get used to the "bald guy", it's not so bad! Kind of a right of passage for him I think. He really is beautifl, no matter what.
He started with his first "green runny nose" (only parents can appreciat that!) today, and I called the clinc not sure if they would want to see him. When I say the clinic, I mean his oncologist. He won't go to see his regular pediatrician the whole time he is going through treatment-three years worth.
They wanted to see him, to make sure his chest was clear, and it was, but he does have and ear infection. Great, more meds. He gained three pounds since Monday, due to the steroids in his system still. His appetite is still pretty big. So, we will continue to lay low.
Sunday we are lined up to go see the "Riders in the Sky" concert here in town. They are a band that happended to play on the soundtrack for Toy Story 2. Grant's favorite. We have the CD, and I have listened to "Woody's Roundup" more times than I care to remember. I can even do all of the yodeling! Well, we are going to go to the soundcheck and meet the band because Grant may not be up to a concert, but if he is feeling well, there are four tickets waiting for us. I lined this up last November when I heard they were coming to town. Let's hope he'll be up for it. He'll have to wear a mask, but that will be OK. Makes me sad. It's like something you would see on TV. The bald kid with cancer wearing a mask meeting his favorite band, like Make a Wish or something. And here we are living it. Sigh.
That's all to report for now. Will be writing more this weekend about Team in Training-Jim and I are going to do a century bike ride around Lake Tahoe to raise money for Leukemia/Lymphoma Society. (yes-that will be 100 miles.)

Wednesday, January 21, 2004 10:20 AM CST

WEll, yesterday was a big emotional day.
Grant's hair started falling out, in big clumps. I gave him a shower and it was all running down his face, shoulders and chest.
On top of that, he is just feeling awful. A lot of back and leg pain. He is having a hard time walking and is very very weak. I took him to our hairdresser to have his head shaved. I think knowing it was happening was harder for me than I expected. I prepared myself, told myself it was going to happen, knew it was expected, but when that first clump comes out....nothing can make you ready for that. So when it finally happened, and it was shaved, I was better. He is so beautiful. So innocent. So trusting.
His tutor and one on one aide came over this morning but were not able to do any work. I didn't think they would, but I knew Ms. Jan would want to see him.
Nights are long with Grant up a lot. I'm so lucky I can stay home with him and take care of him.
Katie is a trooper. Going with the flow. She enjoys Kindergarten so much, I think it is a nice distraction for her.
I guess that is all for now. I hope it gets better soon.
Lynne

Monday, January 19, 2004 11:56 AM CST

Just got back from our clinic appt. Thankfully, Grant's platelet count did not drop so low that he needed a transfusion. Didn't feel like spending the better part of our day there.
Overall, Grant is doing just as he should be doing. Getting through this without any MAJOR speedbumps. Let's keep our fingers crossed. His ANC (overall ability to fight infection) was down to 700-but really around300-400 because he has been on steroids this past week and that can give a falsely high number. So, still no school, no outings, no movies, restaurants etc. Home-bound. But he feels so awful, that he doesn't want to go anywhere anyway. The steroids are still giving him a lot of back pain and stomach upset. We're all glad the last dose was yesterday, although they will take a few days to wash out of his system.
The plan is for next monday to be admitted into the hospital for the day for a spinal tap and to receive the next round of chemo, if his counts are a little higher. They have to be at or above 750. He will come home with this port accessed and I will 9or a home health nurse will) give him his chemo for the next three days. This is the ARA-C that typically wipes out any remnants of hair and really makes them feel even worse.
So, we will just get through the week as best we can.
Take care, and write or call!
Lynne

Saturday, January 17, 2004 9:47 AM CST

Kind of a rough evening yesterday. Grant's discomfort just kept on getting worse, until about 9pm when he was crying about how much his back hurt. I tried massage and heat and comfort. He just couldn't get comfortable. His bed, our bed, pillows, bun-bun (for those of you who know), couch, no position helped. So I called the onc on call and she said to try ibuprofen (after checking his platlet count at last visit) and said if that didn't work to call back and we would probably have to bring him in. I asked what she would be checking for and she said his Pancreas. The steroids can wreak (sp?) havoc on the pancreas. But her first guess was the steroids can cause joint and bone pain, a lot of times in the back. I gave him the ibuprofen at 9:15 and by 9:45 he was asleep. Whew. Close call. But she also said that if the pain is still there today, to call and she would call in a RX for Tylenol with codeine because his platelet count would continue to drop and he cannot take ibuprofen with a low platelet count.
So, that is what is going on here.
It was a long week home. I wake up with him, take care of him (and Katie) all day, tend to his needs, (it's a full time job keeping his appetite happy), and go to bed with him. Mommy needs to get out this weekend! Probably not skiing, as it is about an hour's drive and I want to be a little closer as he is still not doing so well. Maybe a movie.
That's all for now, thanks for visiting.
Lynne

Thursday, January 15, 2004 8:11 AM CST

Good morning everyone,
Today is Thursday, I think. When Grant is home from school, the days tend to run together.
He woke me up this morning by standing at the foot of my bed, you know the feeling when you just know someone is watching you?
So, we were up early, he is watching cartoons, and has just informed me we need more groceries. To him groceries are "goldfish crackers, pizza and macaroni and cheese" The three major food groups, at least while you are on steroids!
No big plans for today. His behavioral therapist is supposed to come, but I won't tell him until she is here, otherwise he will spend the morning telling me "no Kim, next time." She will be very low key with him, reading, just engaging him a little bit. I will probably take that time to go to the grocery store for his "staples".
I took Katie skiing last night for the first outing of night skiing. We had a lot of fun, the sunset was beautiful and the snow was great. She is coming along so well in her skills, we were workingn on pole plants. Of course I had to tell her "don't forget to water your pole plant!"
Thank you all who have vistited the website and signed the guestbook. I am glad I did this, the guestbook alone is worth the effort. This is such a scary, awful time, knowing all of the support we have out there helps a lot.
Have a good day everyone,
Love,
Lynne

Wednesday, January 14, 2004 3:03 PM CST

This is my first real journal entry.
I just sent a mass email with an update, so I won't do that all over again.
Grant is upstairs sleeping as I type this, very tired, very very pale with big dark circles under his eyes. The doxorubicin (chemo) he is on is really wiping him out.
But he is on steroids, so the appetite is raging!
I call him my porkchop, but he calls it "port-chop"
He won't be going back to school any time soon, and the homebound tutor came today along with his one on one aide.
They actually got him to do some work! We are very lucky with his aide, she has been with him since Kindergarten.
I told her she will be walking across the stage sr. year with him to collect his diploma!
We go to the clinic every monday for counts and chemo.
I kind of live for mondays right now.
Katie and I will be going night skiing tonight. We have never been, and she is excited. Should be cold!
Please take a minute to sign the guest book. I really debated doing this, and will see how it goes.
Thanks for visiting!
Lynne

Wednesday, January 14, 2004 2:17 PM CST

I am just getting this together.
I will do a journal entry later today.
Please check back!

Click here to go back to the main page.

----End of History----


Privacy Policy \| Sponsorship/Donations \| About Us \| Contact Us \| FAQs
Copyright � 1997-2003 CaringBridge Nonprofit Organization, All rights reserved.