History

Wednesday, September 9, 2009 11:27 PM CDT

Hi all,

It's been 6 months since my last update, and things are good! We had a great summer with no more health scares. Kevin started 11th grade this week and now has his learner's permit - yikes.

It's time again for another check up. Kevin is now just a few months away from the 4 year point since finishing the relapse treatment. That's longer than he was off treatment the first time around - thank God!

Thanks for checking in on us!

God bless,

Lisa

Tuesday, March 17, 2009 1:39 PM CDT

Brian and Kevin both went to the late effects clinic two weeks ago. They saw the cardio, the oncologist, the social worker and an endocrinologist. While things looked okay, I'm anxious to read the report. It should be here in another week or so.

In the meantime, we had a small scare with Kevin. He was fighting the nasty virus going around here, and missed almost 2 weeks of school. A week into it, his right lymph node in his neck swelled up like a golf ball. Then his neck filled with fluid around it, making him look a lot like like Alfred Hitchcock. I'm always nervous about lymph nodes, of course. But combined with the elevated liver enzymes, negative mono and strep tests and falling platelet count, I was getting crazy. Then the node on the other side did the same thing, so off we went to the oncologist again. Poor Kevin had bloodwork done 3 times in one week! Thankfully everything is resolving now that he's on an antibiotic. Weird how happy I am for an infectious cause....

Thanks for checking on us,

Lisa

Thursday, February 12, 2009 9:27 PM CST

Wow - it's been a while. We're all doing fine. It just occurred to me tonight that February 10th was the date that Kevin was first diagnosed with leukemia back in 1998. ELEVEN years ago. There are so many anniversary dates now, but thankfully this one isn't so scary any more.

Kev has been off treatment almost as long as he was the first time around.

By the end of the month he will pass it!

Thanks for checking on us. I'll try to put some new pictures up soon.

Love,

Lisa

Thursday, November 20, 2008 6:36 PM CST

Dear friends and family,

Kevin had a checkup yesterday - his last 3 month checkup! Since he is celebrating 3 years off treatment (!) next week, we will now move to 6 month checkups. :o)

Kev's counts:

WBC: 6960
ANC: 3750
RBC: 4.65
HGB: 14.5
HCT: 40.3
Platelets: 179,000

We'll take 'em! I was also happy to see another boy at clinic who was treated for sarcoma many years ago when the boys were. I would not have recognized him but for the fact that his mom was standing beside him. He's all grown up and healthy, very far from the bald sickly boy I remember. It was so good to see them.

There has been lots of bad news at our clinic lately too. We're overjoyed and thankful for Kevin and Brian's successful treatment, but deeply saddened for those families facing the painful loss of a child or devastated by relapse right now. There is always that humbling reminder that someone else is going through an awful time, even as you celebrate... My heart goes out to all of those families and I hug my boys even tighter.

Our Candlelighters chapter has been very busy all year serving families at Inova, Georgetown, Children's and Walter Reed Hospitals. We're excited to be able to offer gas cards to families to help with the cost of transportation to treatment, and hope to offer financial assistance very soon. There are so many families struggling!

Thanks for checking on us. Have a wonderful Thanksgiving surrounded by family and friends. :o)

With lots of love,

Lisa and the guys

Update: Dr. P called to let me know that for the first time since treatment, Kevin's IgG is within normal limits. At one time we wondered which came first -- the immune issues or the cancer....now that it's normal THREE years later, can we can safely blame the immune issues on the chemo?? In any case, I'm thrilled to have something else crossed off the list! ~Lisa

Friday, October 31, 2008 6:01 PM CDT

Last night as we were carving pumpkins, it occurred to me that it was the 5 year anniversary of Kevin's relapse.

The memory of that day is seared on my brain forever, like any significant event in life, but this time the date crept up on me. And that's a good thing.

When I asked him if he knew what day it was, Kevin said "the day before Halloween?"

Maybe the reason we didn't feel the diagnosis anniversary creeping up was because we've been looking toward Thanksgiving, which will be a double celebration: 3 years since Kevin finished his relapse treatment and 10 years since Brian finished his treatment. So much to be thankful for!

We are forever grateful to all of our family, friends and treatment team for bringing us through the bad stuff. Each one of you lifted us up in one way or another, from the life or death treatment things to the prayers, hand-holding and jokes to make us smile.

With much love to all of you,

Lisa and the gang

Monday, August 18, 2008 8:18 PM CDT

Dear friends and family,

I know, it's been over a month since I updated. We've been enjoying the summer with yet another vacation! I think we're making up for lost time, but I sure could get used to this. :o)

My side of the family - 16 of us - went to the Outer Banks for the first week in August. It was HEAVENLY! 16 humans aged 4 through 79, 2 golden retrievers and 1 yorkie...5 cars drove 7 hours using who knows how much gas....but as the commercial says: Priceless.

Todd, Lori and their kids came from California, Chuck & his kids from Maryland, Mom & Dad and our family from Virginia. We had a great rental home complete with pool, hot tub, semi oceanfront, etc. The men and almost all the kids went on a fishing charter one day and caught our fish dinner for one evening. Another day we caught the ferry to Okracoke Island for the day. Most days we just did our own thing...kids were skimboarding, boogie boarding and fishing...

...my own thing happened to be just vegging on the beach!

Photobucket
Can't say I read much of the books I brought. There was too much to watch! When I wasn't laughing at the kids or dogs, there were stingrays and dolphins jumping out of the water. The boys played guitar a couple of evenings and it was so nice to hear them play together...

What a great trip - I can't wait for next year. :o)

Kev's 15th (!) birthday was August 13th, just after we returned home. He'd already received his new guitar *before* we left, so we celebrated with dinner out with the family before we took Todd & Lori to the airport. He's less interested about this birthday than he is in getting a learner's permit in 6 months! The guitar has been his best friend this summer while his friends are away on *their* family vacations. He's getting very good!

Kev had an appt at the endocrinologist just before we left on vacation. All is well, just a little behind on growing but finally doing it! He'll start his sophomore year after Labor Day...and I can't believe he will be 3 years OFF TREATMENT in November. :o)

We're having a great summer. I hope you are, too.

xoxo

Lisa

Tuesday, July 15, 2008 9:00 PM CDT

Dear family and friends,

Kevin returned from Habitat with lots of stories about their work and lots of pictures. I'll have to try to get some on here. They gravelled the foundation, putting in a french drain, mixed mortar and stuccoed the foundation, then tarred it. Then they put the floor in and got one wall of the house up. They were tired pups, but proud!

We had planned to leave for Florida the day after his return, but we had a little scare with my dad. To make a long story short, we thought he'd need bypass because of his history and some symptoms he was having. Fortunately, they were caused by an increase in his heart meds so he is fine now that they've dropped back on those. Whew!

We had a wonderful trip to Florida to visit Wendell's mom and her husband. Aunt April lives there as do some of the other aunts & uncles, so we had a nice visit with them too. Kevin brought his friend Evan again this year, and they did lots of skimboarding, boogieboarding and skateboarding. We took a fun day trip to Busch Gardens Tampa before heading back to VA for the lake and the 4th of July. 2200 miles of driving...but we like road trips. :o) Now it's back to reality for a while!

Kevin had an appt last week with his oncologist. He is doing well - his counts were fine although his platelets were on the low end of normal (160,000). His doc said if we checked them daily we'd probably see them up over 200. He has grown 1.5 inches since his appt in April - that's so great! I had to make another appt with the endocrinologist for later this month though.

Right now Kev is miserable with a rash that I think came from a daylily of all things. He woke up with it Sunday and it has gotten progressively worse. The dr said yesterday we could just use benedryl, but today he had to on steroids. Poor baby, it looks like he has a chemical burn from his eyebrows to his lips, and like he had a collagen treatment....he picked the daylily while walking with some friends and goofing off. The docs said we may never know what he's reacting to, but a quick Google of "daylily rash" brought of several pages of people with it. Who knew?!?

I was going through a box of keepsakes last weekend and was so happy to find this. Kevin had an assignment in 2nd grade that his teacher saved to tell me about. All the other kids wrote about Christmas or birthdays....my tough guy who still says it wasn't a big deal to have leukemia wrote the following...

Wow, that's a keeper. I thought I had lost it!

xoxo

Lisa

Tuesday, July 15, 2008 9:00 PM CDT

Dear family and friends,

Kevin returned from Habitat with lots of stories about their work and lots of pictures. I'll have to try to get some on here. They gravelled the foundation, putting in a french drain, mixed mortar and stuccoed the foundation, then tarred it. Then they put the floor in and got one wall of the house up. They were tired pups, but proud!

We had planned to leave for Florida the day after his return, but we had a little scare with my dad. To make a long story short, we thought he'd need bypass because of his history and some symptoms he was having. Fortunately, they were caused by an increase in his heart meds so he is fine now that they've dropped back on those. Whew!

We had a wonderful trip to Florida to visit Wendell's mom and her husband. Aunt April lives there as do some of the other aunts & uncles, so we had a nice visit with them too. Kevin brought his friend Evan again this year, and they did lots of skimboarding, boogieboarding and skateboarding. We took a fun day trip to Busch Gardens Tampa before heading back to VA for the lake and the 4th of July. 2200 miles of driving...but we like road trips. :o) Now it's back to reality for a while!

Kevin had an appt last week with his oncologist. He is doing well - his counts were fine although his platelets were on the low end of normal (160,000). His doc said if we checked them daily we'd probably see them up over 200. He has grown 1.5 inches since his appt in April - that's so great! I had to make another appt with the endocrinologist for later this month though.

Right now Kev is miserable with a rash that I think came from a daylily of all things. He woke up with it Sunday and it has gotten progressively worse. The dr said yesterday just to use benedryl, but today he went on steroids. Poor baby, it looks like he has a chemical burn from his eyebrows to his lips, and like he had a collagen treatment....he picked the daylily while walking with some friends and goofing off. The docs said we may never know what he's reacting to, but a quick Google of "daylily rash" brought of several pages of people with it. Who knew?!?

I was going through a box of keepsakes last weekend and was so happy to find this. Kevin had an assignment in 2nd grade that his teacher saved to tell me about. All the other kids wrote about Christmas or birthdays....my tough guy who still says it wasn't a big deal to have leukemia wrote the following...

Wow, that's a keeper. I thought I had lost it!

xoxo

Lisa

Tuesday, July 15, 2008 9:00 PM CDT

Dear family and friends,

Kevin had an appt last week with his oncologist. He is doing well - his counts were fine although his platelets were on the low end of normal (160,000). His doc said if we checked them daily we'd probably see them up over 200. He has grown 1.5 inches since his appt in April - that's so great! I had to make another appt with the endocrinologist for later this month though.

I was going through a box of keepsakes last weekend and was so happy to find this. Kevin had an assignment in 2nd grade that his teacher saved to tell me about. All the other kids wrote about Christmas or birthdays....my tough guy who still says it wasn't a big deal to have leukemia wrote the following...

Every day without cancer is the best day!

xoxo

Lisa

Wednesday, June 25, 2008 9:16 AM CDT

Dear friends and family,

Long time, no update! Sorry about that. We have been very busy. But in a good way. Kev had a little break of about a week of sleeping in and hanging with friends. We took him to Kings Dominion with a friend and dropped them off. They had a ball - getting dominated by the new rollercoaster "The Dominator". Wendell and I took the opportunity to go for a day-long drive exploring little antique shops and a cafe in the area between the amusement park and Richmond. We haven't done that in YEARS, so it was fun.

Kev left for Habitat for Humanity on Sunday. We heard from him last night, and he's working hard building a house but also having fun. Not getting much sleep though, as they wake them at 5 AM and the kids are sleeping in a church and staying up late. Monday he hauled gravel for a french drain and Tuesday they mixed mortar to stucco the cinder block walls. Today they'll tar the basement walls. Sounds like great experience! We're very proud of him - he was called one of the hardest workers there. Who knew?!? Guess we'll be expecting more of him at home now! They went to a movie last night, so they do get some R&R....I'm sure we'll hear lots more stories when they return late Thursday evening.

Meanwhile, back at the ranch, this week I've been lobbying again for the Senate to pass the Conquer Childhood Cancer Act, also known as the Carolyn Pryce Walker Act of 2008. The bill is named for Rep. Deborah Pryce's daughter, who sadly passed away from neuroblastoma 9 years ago.

We have been trying for 8 years to bring pass some form of this bill. It has never gotten this far though. This bill has passed on the House side, 416 to 0! It still needs to clear the Senate, or the bill dies and we must start all over again next year. Please ask your senators to bring this to the floor for a vote. There is already a majority of nonpartisan cosponsors on the bill, so it should pass if it is brought to the floor. The problem is that there is so much legislation to be done by year end, so please put in a word with your senator.

OK, off the soap box now....

Kevin's next check up is in mid-July. It's a whole 3 months between checkups now!

Love,
Lisa

Monday, June 16, 2008 9:28 PM CDT

Dear family and friends,

We're doing well, and school is finally out!! Kev is officially a sophomore and so happy to be able to sleep late. ;o)

Lots of stuff going on this summer...we're looking forward to some great times and making more good memories.

Next month is Kev's checkup. No date yet, since our doctors have moved and the appt scheduling is still a little behind.

Thanks for checking in on us.

Love,

Lisa

Thursday, May 22, 2008 10:22 PM CDT

Dear friends and family,

It was recently pointed out that I don't update much anymore. Well, I guess that's because we're busy living! :o) That's a good thing.

I was thinking what a great Mother's Day this was, despite the stinking rainy weather...this year for Mother's Day weekend it was Kevin's confirmation...last year it was Brian's graduation...2 great ones! Twelve years ago we were in the hospital for Mother's Day and Brian had me leave the room so he could make me a card. That was the end of life as we knew it. I think each and every holiday has a memory of us spending it in the hospital, so all of them at home are just that much sweeter for us.

Kev has now been off treatment for 2.5 years (!). Last week we were out one evening for dinner and he said that both of his legs were hurting in a not-normal way...of course all 4 of us just looked at each other, with the same thought crossing our minds. Sigh...I guess that will be the case forever. We push worry away, and for me anyway I'm pretty successful most of the time. I refuse to live in fear of leukemia after all the years we've spent fighting it. Kev felt better after taking some motrin, and hasn't mentioned it since.

We have a busy month ahead...our 27th anniverary, the holiday weekend, the end of school, Habitat for Humanity (Kevin)...vacation for all of us.

Thanks for checking. I'll try to update more often!

Love,

Lisa

Saturday, May 10, 2008 8:27 PM CDT

Hi family and friends,

Just a short note to say that all is well. Kevin is busy winding down his freshman year, writing his freshman research paper, taking the dreaded state tests and getting ready for finals. And tomorrow is an important day for him - his confirmation!

We've all been trying to get into shape by going to the gym a few times a week. The first week there we ran into one of the young doctors who took care of Kevin the week he relapsed. She remembered *us* but sadly my memory must be totally shot. After she mentioned the date and few other specifics of that awful weekend, it started to come back to me. She was amazed when she saw Kevin - how big and healthy he is compared to Halloween 2003! She's a "real" doctor now, she was a resident then but we obviously made an impression on her. Of course she remembered what a funny guy Wendell is...! After that we started to run into all sorts of people we know from various places....who knew they were all hanging out at the gym??

In between work and home stuff, I've been busy with our local Candlelighters group. We are finally official, having incorporated, applied for our 501(c)3 and opening a bank account. We hold support meetings and make visits to families who have received the devastating news of a child's cancer. We delivered Easter baskets to all the kids at the hospital and we have new patient care bags for families thrust into the hospital unexpectedly. It's lots of work but so very rewarding. Sadly there has been a huge increase in the number of new cases of childhood cancer just in the first quarter of this year.

A big hug and Happy Mother's Day to my wonderful mom and mother-in-law, as well as all my mom family and friends. We'll be celebrating Kevin's confirmation and Mother's Day with family tomorrow.

Love,

Lisa

Tuesday, April 8, 2008 8:50 PM CDT

Dear friends and family,

Kevin had his 3-4 month check up today. It was supposed to be 3 months, but the last time we went was December...whoops.

Actually, we've been going to the immunologist each month in between, so we've had CBC's done there. Believe me, I can't go the full 3 months without a CBC. I'd have an anxiety attack!

Kevin's counts are good, but once again show he is fighting something. Gee, I knew that already by the congestion/cough/etc., so I didn't need the whopping white blood cell count slapping me in the face!

Dr. P did a thorough exam, drew labs and urine. Everything looked good other than the cold he's had since the weekend. His counts were good other than the elevated WBC and ANC:

WBC = 10.0
ANC = 8.0
HGB = 14
HCT = 41
Platelets = 169,000

The blood slide was still drying and rush hour was quickly approaching so we didn't hang around. When we left she said she'd see us in July unless there was something worrisome on the slide or other labs - in which case she'd call.

This evening when the phone rang about 7:30 and I heard her voice on the other end I nearly had a heart attack! Bless her, she was calling to let me know the slide was fine! She did the manual differential (counted cells manually) and it matched what the machine spit out when I was there.... phew....it took me some deep breaths and a glass of wine to fully recover. That's what I love about our docs. They know moms like me need that extra reassurance, and they take the time to give it.

All is well in the Tignor house. We'll sleep well. I think I'm good til July...or close to it.

Love,

Lisa

Thursday, April 3, 2008

Dear friends and family,

Kevin did make antibodies to the pneumovax shot, so the immunologist thinks his immune system just needs more time to recover. We plan to do more tests/vaccines over time, but through the oncologist's office so we don't have to make the trip to Children's in DC as often. Our next appt at the onc is April 8th. Kevin is also due for his cardiology check-up, so I made the appt for the 24th.

The other tests showed that his B and T cells were in the acceptable range and his IGg was finally up in the 500s.

Right now, Kev is sick with what appears to be just a nasty cold. He has been pretty healthy overall this school year, so I am encouraged that his immune system is ever so slowly rebuilding.

I was out of town for a Candlelighters conference last week. The boys - Wendell and Kevin - survived without me!

Thanks for checking in,

Love,

Lisa

Saturday, March 15, 2008 8:36 PM CDT

We're doing fine. Kevin had his appt at the immunologist on the 11th. More blood was taken, more tests will be done....hopefully I'll get some results this coming week. Kev is busy hanging with friends almost 24/7 now that it's spring break for him.

And yes, his hair is still long. We're planning to get some of it trimmed tomorrow. ;o)

Thanks for checking on him. No (medical) news is good news!

xoxo

Lisa

Thursday, February 28, 2008

Dear family and friends,

We doing very well here - very busy, but in a good way!

Kevin recovered from the virus and I was able to get him into his regular doc's office for the pneumovax shot. We're supposed to go back to the immunologist on March 11th to check his titers (antibodies made in response to the shot). Then we'll make a decision whether to start the series of other vaccinations.

I've been busy with our local Candlelighters group, preparing and delivering new patient care bags to the hospital, making visits to the clinic to support newly diagnosed parents, preparing our IRS application for non-profit status...oh yeah, and then there's my real job! The calendar is always full, but then again it is for all the ladies on our board. We all have jobs, kids, etc. and there never seems to be enough time in the day! There is so much work to be done, but we now have 8 new volunteers to help us so this year promises to be even more productive. :o)

Brian and Wendell are doing well, busy with work, etc. We've been planning a summer family beach trip and can't wait.

Thanks for checking on us.

Love,

Lisa

Tuesday, February 12, 2008 7:04 AM CST

Dear family and friends,

Yesterday Kevin was under the weather again and missed school. He hasn't completely shaken the virus that began a few weeks ago, but neither have the folks at work that are fighting it. It really is a nasty bug!

I heard from Dr. L's assistant last night on the first results from the blood taken last week. Kev's IgG total is now 549 -- woohoo, he broke 500 for the first time in memory! Dr. L wasn't too concerned with the numbers of cells, but they are still low. He wants us to give Kevin the pneumovax shot and then bring him back in to test his response/antibodies to the vaccine in a month.

So, I'm waiting for the pediatrician to open this morning and I'll see when I can get an appt.

Thanks for checking on us.

Love,

Lisa

Thursday, February 7, 2008 7:54 AM CST

Hi all,

Tuesday's appointment at Children's went well I thought. We ran into Dr. Greenberg at the nurses' station - he is there 4 days/week now - and he was happy to chat with us and provide an introduction and background on Kevin to Dr. Loechelt. Not that Dr. L hadn't already received it from Dr. P a few months ago, but it was nice to have both docs in the exam room at the same time, even for a few minutes!

We discussed whether this is a condition that could have preceded leukemia or whether it is the result of the treatment. Of course that freaks me out - which caused which? And if the condition contributed to the leukemia, would that put him at risk for relapse? Some theories are that the immune surveillance system, if broken, would allow ALL to develop. Arrgh - I keep pushing that thought away....! While it would be hard to determine at this point in our boys, there are patient pairs where one boy has ALL and the brother has an immunodeficiency. Dr. L seems to think it's more likely that Kevin's condition is caused by the chemo (I prefer this theory!), but some of the tests may help shed more light on that.

Dr. L explained that Kevin's total white count is fine (which I knew) and even his B and T cells aren't all that weird even though they aren't within the normal parameters they use. His IgG level is in the 400's which is just below the range where some people receive donor IgG infusions. We talked about the number of illnesses Kevin has per year (not enough to infuse IgG we agreed) and the fact that he hasn't mounted antibodies to the vaccines given last fall. One concern in the short term is the possibility that he'll step on a nail or get injured in a car accident. If that happens, he'd have to have an infusion in the ER of someone elses tetanus antibodies since his tetanus shot "didn't take."

In the long term the issues are whether he would be susceptible to more common serious illnesses such as pneumonia due to low immune function. We still don't know if that is something that is just going to take more time. The usual time after a transplant is a year or so for recovery of immune function, but we know our kids just don't follow the norm. Add to that the intensity of Kevin's relapse regimen and his frequent immune suppression over the course of the 2 years....

Dr. L explained that we probably wiped out his memory cells with all that chemo - which means he would require a series of vaccinations like the schedule for infants. One set of vaccines last fall wouldn't be enough.

He ordered more immune function blood tests that will tell us where his B and T cells and immunoglobulin levels are right now and also to determine just how those cells are functioning and communicating with each other. One of the tests should be back by the end of the week but the others will take a few weeks. He also wants to do a PFT (lung function test) to get a baseline to compare in the future in case Kev does have respiratory infections that scar or damage his lungs over the next 20 years. Depending on those results, there are preventive measures that can be taken if needed. I am interested in those results too, because of the length of time Kevin was on the ventilator which can also do lung damage.

We have another appointment next month to discuss the findings and decide the immunization schedule.

Kev is fighting another cold right now but holding his own and hasn't missed school - so is Brian and Wendell just recovered. I'm surrounded by germs both at home and at work - I'm healthy so far!

Thanks for checking on us.

Love,

Lisa

Thursday, January 24, 2008

Dear family and friends,

We have been busy with life - a good thing!

Last weekend we went to Canaan Valley WV on a ski trip - brrrr!! It was 20 below at the top of the lift on Sunday. We were so bundled up we could hardly move, but we had fun. Kev recovered from a cold just in time to go on the trip. Brian joined us but had to go home on Sunday for work Monday.

This week he has exams so he's hating life right now....

We have an appointment with the immunologist on Feb. 5th. Hopefully we'll get some answers as to what's going on with his white cells.

Please take a minute to say a prayer for our friend Matthew who is going through a bone marrow transplant. He will receive his new cells sometime tonight, so the next few weeks will be the wait-and-see-and-pray-for-no-problems-while-the-new-cells-grow-healthy-marrow time. Matthew is about a year or so older than Kevin and he has been fighting leukemia for the past 7+ years. He's due for a break and a cure once and for all!

Thanks for checking on us.

Love,

Lisa

Monday, January 7, 2008

Hi everyone,

The 10th Anniversary Growing Hope calendars are here! These calendars are full of artwork done by children in treatment at our Fairfax pediatric oncology clinic (thank you Margy!). Let me know if you'd like one!

This is the calendar that Wendell finagles each year....he begs, barters, kisses up, calls in favors, etc....all the paper, pre-press work and printing is donated ~ THANK YOU Randy, Aimee, Karen, Scott, Tony, DeLaRue & Access Printing! We love you all and can't thank you enough for sticking with this project for 10 years!

This year's calendar also features the best artwork from past year's calendars. The cost is $10 each and every penny goes to giving the kids creative and fun diversions during treatment, educational materials, outings, mini-wishes and financial aid - there is no overhead or administrative cost for Growing Hope.

Growing Hope
P.O. Box 151
Fairfax Station, VA 22039-0151

Love,
Lisa

Sunday, December 30, 2007

Dear family and friends,

Merry Christmas!

We have had a warm and relaxing week with family at the lake. Kevin is feeling well and Brian is busy with work and fun stuff. Look for him at the Skins-Dallas game tomorrow!

May 2008 bring health and happiness to you.

Love,

Lisa

Tuesday, December 11, 2007 6:11 AM CST

Merry Christmas from the Tignors!

Dear family and friends,

Kevin recovered well from his mystery virus, thank God. His immune testing came back and the results are definitely off, so we do need to see an immunologist.

It has been an emotional few weeks.

Many of you know that I have been part of an online support group for many years (since '98), and it has helped me tremendously. Whenever I had a question over the years, or someone else did, no matter what time it was there was someone, somewhere in the world who was going through something similar. Only someone who has been there, done that, can truly understand what you're going through. Several of us have shared the relapse journey together, and have bonded through the ups and downs of our child's treatment.

Two little girls from that group, Alexia and Ashley, lost their battle with leukemia in the past 2 weeks. My heart just aches for their families -- and I have to somehow process my anger at this damn disease once again. Did you know that leukemia is the "good" cancer?? Parents will go to the ends of the earth to save a child, and these parents did practically that, picking up and moving for months - years - trying to cure these little girls.

Saturday night I persuaded Wendell and Kevin to attend the Gold Ribbon Awareness Tree lighting at the Old Post Office in Washington, DC. We made a day of it, looking at decorations in DC and window shopping at Pentagon City. Here are pictures of the tree, which is sponsored each year by Candlelighters. Each of those gold ribbons represents a child who has battled cancer.

Love,

Lisa

Tuesday, November 27, 2007 9:15 PM CST

Today's counts:

WBC = 9900
Lymphocytes = 6200
Monocytes = 1500
Granulocytes/ANC = 2200
RBC = 4.24
Hgb = 13.8
Platelets = 103,000

These counts are in line with having a virus, so I'll take that even though his platelets aren't in my comfort zone. I know, I know - fevers eat up platelets. In that case, I'm glad we didn't check those on Saturday!

Kev felt well enough to go back to school today, and he had a good check up this afternoon. No more fever, no more stomach pain. There weren't any enlarged lymph nodes, and his belly was soft even after eating Taco Bell on the way up the highway....(hey, we thought that'd be a good test). I guess I will always freak out when there is anything out of the ordinary with him. I would do the same thing with Brian, only he so rarely gets sick (knocking wood of course) that I don't have to "go there" too often when it comes to him. Kevin on the other hand, seems to always have something when we get close to the next check up. Last appointment it was a lousy sinus infection (his WBC was 10,000 then too but he had the high ANC that incidates bacterial infection is present - this time the lymphs are high indicating a viral infection).

After this appointment, we are beginning our 3rd year off treatment, so we now will only go back every 3 months unless there is something to worry about.

What, me worry??

One other thing about today - Dr. P sent several vials of blood off for immune testing (IgG, b cells and something else that I forgot). She mentioned the name of an immunologist that she'll be sending us to when we have the results.

Please keep our friends Alexia, Ashley and Matthew in your prayers. I hate cancer.

Love,

Lisa

Tuesday, November 27, 2007 9:15 PM CST

Today's counts:

WBC = 9900
Lymphocytes = 6200
Monocytes = 1500
Granulocytes/ANC = 2200
RBC = 4.24
Hgb = 13.8
Platelets = 103,000

These counts are in line with having a virus, so I'll take that even though his platelets aren't in my comfort zone. I know, I know - fevers eat up platelets. In that case, I'm glad we didn't check those on Saturday!

Kev felt well enough to go back to school today, and he had a good check up this afternoon. No more fever, no more stomach pain. There weren't any enlarged lymph nodes, and his belly was soft even after eating Taco Bell on the way up the highway....(hey, we thought that'd be a good test). I guess I will always freak out when there is anything out of the ordinary with him. I would do the same thing with Brian, only he so rarely gets sick (knocking wood of course) that I don't have to "go there" too often when it comes to him. Kevin on the other hand, seems to always have something when we get close to the next check up. Last appointment it was a lousy sinus infection (his WBC was 10,000 then too but he had the high ANC that incidates bacterial infection is present - this time the lymphs are high indicating a viral infection).

After this appointment, we are beginning our 3rd year off treatment, so we now will only go back every 3 months unless there is something to worry about.

What, me worry??

Please keep our friends Alexia, Ashley and Matthew in your prayers. I hate cancer.

Love,

Lisa

Monday, November 26, 2007 8:19 PM CST

Happy Thanksgiving!

We had a nice, long relaxing holiday at the lake with my Mom & Dad and Chuck's family (11 of us). We played kickball, the guys went fishing, did some fall chores for my dad, shot Brian's bow, and of course ate a lot. Mom and I cooked a lot! More great memories were made, as they always are when we all get together. :o)

All went well until Kevin spiked a fever with shaking chills Friday evening. I thought I was doing pretty well with handling it, until it went over 104! That was even 2 hours after I'd given both tylenol *and* motrin. I finally called the pediatrician at midnight for advice on how to avoid the ER - still trying not to panic - we were over an hour from any hospital, and I was determined to make this a "normal" virus despite the high number on the thermometer. Poor Kevin has only known going to the hospital when he has a fever, and I can't remember one that high, at least not off treatment. The pediatrician had me give another dose of motrin (all of this in a 2 hour span) and said if it didn't do the trick we may want to visit the ER to have him checked out. My worry was that he didn't have any of the typical viral symptoms - just fever/chills and slight headache. I was actually hoping he'd get a sore throat. At least that would explain things. The 2nd motrin dose did bring it down about an hour later to 101, and by 2am it was 99 so we all finally got some sleep.

Saturday Kev was pretty wiped out so we packed up and headed home a little early. He did have some nausea on Saturday and a headache. Then the fever returned Saturday night, only to 101 this time and didn't require so many pills. He's been lying low ever since - missed school today - and has some belly pain after some meals but not all meals. It occurred to me that this could be a gallbladder attack since we never had the darn thing removed. I'm still hoping it was something viral.

He does have a regular scheduled oncology appointment tomorrow, so we might get some clues as to what's been going on.

Thankfully, tonight he seems to feel much better. Nothing like a little drama...

Thanks for checking on us,

Love,

Lisa

Sunday, November 18, 2007 4:22 PM CST

Dear family and friends,

Things are good here. Kevin got a (slight) haircut today. Brian is visiting and we're watching the Redskins-Dallas game before dinner. Normal!

This is a special week for most people - but our family it's really up at the top. Kevin finished his relapse chemo treatments 2 years ago at Thanksgiving. Brian finished his treatments 9 years ago, also at Thanksgiving!

The Conquer Childhood Cancer Act has made it farther than ever this time. The bill has 45 cosponsors and last week was marked up by the senate HELP committee. We still have a long way to go, so please take a moment to call, email and write your senator in support of this bill. If you click the HELP committee link above, there is an easy link to write to your senator there. Please take 2 minutes to do this before you forget. We especially need to contact the following, who have not yet signed on as cosponsors:

Alabama
Richard Shelby (R)
Jeff Sessions (R)

Alaska
Ted Stevens (R)
Lisa Murkowski (R)

Arizona
John McCain (R)
Jon Kyl (R)

Colorado
Ken Salazar (D)
Wayne Allard (R)

Florida
Bill Nelson (D)
Mel Martinez (R)

Idaho
Larry Craig (R)
Mike Crapo (R)

Illinois
Richard Durbin (D)
Barack Obama (D)

Iowa
Tom Harkin (D)
Charles Grassley (R)

Kansas
Sam Brownback (R)
Pat Roberts (R)

Louisiana
David Vitter (R)

Maine
Olympia Snowe (R)
Susan Collins (R)

Michigan
Carl Levin (D)

Mississippi
Trent Lott (R)

Missouri
Claire McCaskill (D)
Christopher Bond (R)

Montana
Max Baucus (D)
Jon Tester (D)

Nebraska
Ben Nelson (D)

Nevada
John Ensign (R)

New Hampshire
Judd Gregg (R)
John Sununu (R)

North Carolina
Elizabeth Dole (R)

North Dakota
Kent Conrad (D)
Byron Dorgan (D)

Ohio
George Voinovich (R)

Oklahoma
James Inhofe (R)
Tom Coburn (R)

Oregon
Gordon Smith (R)

Pennsylvania
Arlen Specter (R)

South Carolina
Jim DeMint (R)

South Dakota
John Thune (R)

Tennessee
Lamar Alexander (R)
Bob Corker (R)

Texas
Kay Bailey Hutchison (R)

Utah
Orrin Hatch (R)
Robert Bennett (R)

Virginia
James Webb (D)
John Warner (R)

Washington
Maria Cantwell (D)

West Virginia
Robert Byrd (D)
John Rockefeller (D)

Wisconsin
Herbert Kohl (D)
Russ Feingold (D)

Wyoming
Michael Enzi (R)
John Barrasso (R)

OK, off the soapbox now! Thanks for checking in on us. Have a safe and happy Thanksgiving!

Love,

Lisa

Tuesday, October 30, 2007 10:02 AM CDT

Well, today is the day that Kevin relapsed 4 years ago....we thought of it this weekend when he went off to "Fear Fest" at Kings Dominion with his friends (he ditched the Homecoming dance to go). The last time he went to that was the Saturday before his relapse, and I sent him off with some Advil since he had already been experiencing leg pain that day....

Fast forward to this year - all is well, thank God. I finally took the pictures off my camera from the past few months, so I'll share:

Labor Day - celebrating Brian's 22nd birthday:

Kevin on the jetski

1st day of high school - obviously not happy about posing for this...

with cousins and Uncle Chuck this weekend

visit to the Alpaca farm this weekend

Love,

Lisa

Wednesday, October 24, 2007 7:55 PM CDT

Dear family and friends,

We're plugging along here with work and school. Kevin is doing well in 9th grade, and getting ready for Homecoming this Saturday!

On the medical front, today we visited Children's National Medical Center in DC for Kevin's appt with the endocrinologist, Dr. Nunez. Great news - Kevin is finally GROWING! Well, I did already know that because sometime in the past few months he passed me up and is now over 5'1" - actually almost 5'2". He has grown one inch in 4 months, so if he keeps up at that rate we'll see 3" in a year - whoohoo! Remember... he was 4'9" when he relapsed in October of 2003 - so it has been 4 years and he has only grown 4 inches...

We are very happy that the growth has finally started to kick in - and the fact that he hasn't started the voice changing, etc. means he'll have more time to grow before all that maturity stuff slows down the growth spurt.

We did have some other news that wasn't terrible, but not so great either. No one really knows what to make of it yet. We had Kevin's immunizations (MMR, DTaP, varicella and Hep) re-done in August, and blood was drawn at the last check-up to test for "titers" or antibodies. Well, there was none. It's as if he never got the darn shots, which means he probably has some sort of immune deficiency. Even if you've been through a bone marrow transplant, the immune system is expected to be back at a year. With chemo only, it's expected at about 6 months to a year. We'll have to do more in-depth immune testing done at his appointment next month. This Thanksgiving will celebrate 2 years off treatment for Kevin and 9 years for Brian!

Thanks for thinking of us and checking on Kevin.

Love,

Lisa

Thursday, October 18, 2007 9:34 PM CDT

Ashley and Matthew could both use extra prayers....Ashley has begun her conditioning treatment (radiation + chemo) for her long-awaited transplant and Matthew is trying to achieve remission so he can also undergo a transplant...both of these kids have relapsed for the 2nd time - my worst nightmare.

Wednesday, October 10, 2007 10:03 PM CDT

Have I mentioned how much I HATE CANCER?

Please pray for Matthew. Matthew finished 3 years of relapse treatment in July, and for the past week had what was thought to be a sinus infection. Today he had a spinal tap and got the devastating news of another relapse - this time in his central nervous system. Matthew's mom held me up many times when I was worried or terrified of relapse - including this summer's bruising episode. Matthew's motto is Never Give Up. I know they'll rise to fight this again, together, but right now I can imagine how totally devastated and heartbroken they are that they must.

Oh, how I hate hate hate this disease....

Tuesday, October 2, 2007

Dear family and friends,

I'm sorry if I worried you - rambling on like I did Sunday night. But I do appreciate your good thoughts and prayers on Kevin's behalf.

Today his appointment went well. He's definitely fighting something - likely a sinus infection, which would explain the headache/vomiting. He's on Z-pac (x2), so hopefully he'll be back to normal soon. His counts:

WBC = 10,000 (elevated, but that's expected when you're sick)
ANC = 6600 (again, this indicates an infection going on)
HGB = 14.0 (great!)
HCT = 41.0 (great!)
Platelets = 193,000 (well within normal limits)

Whew........so another 2-month check up is checked off! We go back again in December, and that will mark his 2 years since finishing the relapse chemo.

Kev was back in school today, so he just has the one day of classes/tests/homework to make up. Dr. P thinks his body is like a kindergartner's - catching everything that comes along. Makes sense, since he was isolated for so long during elementary school. They also extra drew blood today to check to see if he has made antibodies to the immunizations he got in August. I have an appt with the school on Thursday to fill them in on what's been going on for the past few years.

On a happier note, Kevin is enjoying high school and looking forward to Homecoming and Halloween.

Thanks again for checking on Kev.

Love,

Lisa

Tuesday, October 2, 2007

Dear family and friends,

I'm sorry if I worried you - rambling on like I did Sunday night. But I do appreciate your good thoughts and prayers on Kevin's behalf.

Today his appointment went well. He's definitely fighting something - likely a sinus infection, which would explain the headache/vomiting. His counts:

WBC = 10,000 (elevated, but that's expected when you're sick)
ANC = 6600 (again, this indicates an infection going on)
HGB = 14.0 (great!)
HCT = 41.0 (great!)
Platelets = 193,000 (well within normal limits)

Whew........so another 2-month check up is checked off! We go back again in December, and that will mark his 2 years since finishing the relapse chemo.

Kev was back in school today, so he just has the one day of classes/tests/homework to make up. Dr. P thinks his body is like a kindergartner's - catching everything that comes along. Makes sense, since he was isolated for so long during elementary school. They also extra drew blood today to check to see if he has made antibodies to the immunizations he got in August. I have an appt with the school on Thursday to fill them in on what's been going on for the past few years.

On a happier note, Kevin is enjoying high school and looking forward to Homecoming and Halloween.

Thanks again for checking on Kev.

Love,

Lisa

Sunday, September 30, 2007 9:15 PM CDT

Dear family and friends,

As usually happens when Kevin's check up is looming, he's either sick or has some worrisome symptom or another...tonight he has swollen glands, headache and vomiting. Two weeks ago he was supposed to go for the 2 month check up and he came down with a respiratory virus. He was home from school and definitely full of germs - so we postponed the checkup until Oct. 2. I thought he'd be over this by now, but it's either the 2 week old virus hanging on or this is some new one that's taken hold. Ugh.

Thoughts of another relapse are mostly tucked away in the back of my mind, but at times like these they quickly surface and eat away at my gut. I guess those worries will never ever go away.

Thanks for checking on Kevin. Please pray this is *just* another one of those viruses he's so susceptible to.

Love,

Lisa

Wednesday, September 5, 2007 10:30 PM CDT

A couple of moms from my online support group created this video for Childhood Cancer Awareness Month - September. The photos used are from the families of the support group, so I "know" these kids. Since I was away on vacation, I didn't have a chance to participate. Maybe next year! I think this is just amazing...it depicts all the stages of treatment and the playful and courageous spirit of these kids.

Love,

Lisa

Sunday, August 26, 2007 6:58 PM CDT

As promised - finally - here are some pics!

What we did on our summer vacation........

Kevin and Evan at the beach with their skimboards...from the look on Kev's face he may just done a face-plant...

...maybe I'll just steal a peak while I pick up my board....

um, yeah...the beach is THAT way...

Watch THIS, mom!

Did you see those baby sharks swim by?

At Blizzard Beach on Kev's birthday. They need a little sustenance before we tackle the big one...

oh no, Dad's not going - how did *he* get in the picture?!?

Now that is one tall water slide!

........and Kev does it! What, the sign said he came down at like 62 mph?

ahh, the thrill of victory...!

There's nothing like sushi for your birthday dinner.

too bad...Ami wasn't there. Besides, the sign says you have to be 18 to enter

taking a break from people-watching in South Beach

Saying goodbye to April & Tony

Darn, I wish I'd taken more pictures. I must have been having too much fun myself!

Next week - high school - yikes!

Love,

Lisa

Saturday, August 18, 2007 8:55 PM CDT

Dear friends and family,

We just arrived home after a wonderful vacation in Florida where we visited Nana and David, Aunt April and Tony and celebrated Kevin's 14th birthday! Brian wasn't able to take time off from his new job, so Kev brought a friend along to keep him company (especially since we drove the 12 hours straight thru). We celebrated Kevin's 14th on the 13th at Disney's Blizzard Beach, followed by a lovely sushi dinner (his favorite) at a nearby restaurant. The week was packed with fun, starting with a few nights at Nana's in Melbourne and then a few nights at Aunt April's near Boca Raton, then back to Melbourne for a few more days...we shopped and ate (too much eating!) in South Beach and Ft. Lauderdale, and the boys had a ball skimboarding on the beach at Melbourne and Boca during the day and practicing their skateboarding at night in the driveway. Nana, David, April and Tony all spoiled us so we'll never again stay in a hotel! Wendell and I even got a chance to catch up with old friends on Friday night. I'll try to post pictures of some of it soon. Tomorrow it's off to the lake to pick up Jasmine from my parents'...we've missed her!

Thanks for the birthday wishes for Kev!

Love,

Lisa

Sunday, August 5, 2007

Dear family and friends,

We've had a busy few weeks with my brother and his family visiting from California. They stayed with us for a few days before joining my parents at the lake. We were fortunate to get almost everyone under one roof last weekend at the lake. We all had so much fun catching up with each other, boating and fishing. The lake was perfect and the weather was surprisingly great for this time of year. Todd, Lori and the kids left for California last Wednesday, and we miss them already!

Kevin is doing great, and enjoying the summer with his friends - skateboarding, longboarding, going to movies and just hanging out. His 14th birthday is next week, so we've got some celebrating to do! We'll just have to make sure he doesn't break any bones this year. :o)

Tuesday we'll be re-vaccinating him at the pediatrician. His immunities to measles/rubella, whooping cough and chicken pox were wiped out by chemo along with the leukemia. He'll start his freshman year of high school this year, after Labor Day.

Please pray for our friends Alexia and Ashley. I will never understand why children have to suffer so much. Alexia has relapsed after two transplants, and Ashley's transplant is put off until the doctors can rule out typhlitis and pancreatitis....damn cancer.

Love,
Lisa

Wednesday, July 18, 2007 9:37 PM CDT

Dear family and friends,

Kevin's checkup went very well yesterday. I'm so relieved - his platelets were 201,000! One of the first cell lines to drop in a relapse is the platelets. Kevin's are UP from his last appointment in May - woohoo!

I had worked myself up quite a bit in the last few days because of some worrisome symptoms: unusual bruising on his legs last month, dizzy/faint spell in the shower on Sunday, headaches on an off the past 3-4 days. (Prior to his relapse he had dizzy/faint spells for 2 months but all tests were negative and CBC was normal 2 weeks before the onset of leg pain and relapse diagnosis.) On Monday morning I had a dream that he relapsed - that certainly didn't help! If the headaches and dizzy spell had happened before this weekend, I would have taken him in sooner. This far off treatment though, I've been trying not to think everything is a relapse. So, Kevin's platelets were a whopping 201,000 - up from 173,000 in May. Other counts:

Hemoglobin = 14
Hematocrit = 43
ANC = 4500

All of these counts are better than last time, so I'm very pleased. The slide looked fine and the rest of the appt went very well. :o) We're going to go ahead and re-immunize him for those vaccines for which he no longer has titers. That's usually done a year after treatment ends but he was sick so often this year with one virus after another this year that we never got around to that. More good news: the endocrinologist called me to tell me she disagreed with the bone age reading done last fall (as much as a year and a half off) - meaning Kevin has
more time to grow and she thinks he'll reach an OK height.

I told the oncologist that these appts every 2 months only give me about a month's worth of peace until there's a symptom that starts making me crazy... Wendell thinks the peace of mind isn't even that long!

Love,
Lisa

Wednesday, July 11, 2007 8:44 PM CDT

Dear family and friends,

Sorry it's been a long time since I updated. On June 25-26 I went to Capitol Hill with over 350 families of children with cancer in support of the Conquer Childhood Cancer Act HR 1553 introduced by Rep. Deborah Pryce (R-OH) in March 2007 and S. 911 sponsored in the Senate by Sen. Jack Reed (D-RI).

Several cosponsors have signed on since then (for a total of 89 in the House, 29 in Senate), and we already had the support of our congressmen from Virginia. I've visited all of them (House and Senate from VA) for the past 7 years for crying out loud, but I'll keep coming back. It's kind of funny (I guess funny is not the right word...) when their staffers remember me from the years before. Sigh....I have visited Robb, Allen, and Warner and Webb - some of them have met with us in person rather than send a staffer. But with each new election and starting over educating them, it feels like we'll never get the funding this horrid disease deserves.

You can see the House cosponsors here: House cosponsors and the Senate cosponsors here: Senate cosponsors. Please take a moment to write to your legislators in support of this bill. You can quickly and easily do so by clicking here.

OK, off the soapbox now. ;o)

Since then, we've been visiting family at Lake Anna and in southwestern VA for Wendell's family reunion. Next week my brother Todd and his family are coming from California to visit for a few weeks. The summer is flying by!

Regarding Kevin's bruises - he had so many and I was very worried. Then as soon as those started to heal, he got more on top of the others and it looked even worse! But the forced break from skating during our travels gave him a chance to heal and right now I think his legs look OK. I can't say for sure because he's been wearing long pants. I guess he got tired of my furrowed brow....

We're waiting for his next appointment for blood counts. Dr. P has been in in Sweden and we're on the schedule for her first day back - July 17. Other than the bruises, he feels good. Right now he's at the movies with a bunch of friends. :o)

Thanks for checking on us.

Love,

Lisa

Wednesday, July 11, 2007 8:44 PM CDT

Sunday, June 24, 2007 11:26 PM CDT

Dear family and friends,

Kevin has been enjoying his summer vacation. Maybe a little too much, as his legs are covered with bruises. I'm neurotic about those things anyway and Wendell is trying to keep me calm...and Kevin HAS been trying out a lot of skateboard tricks....No, I haven't rushed him up to the clinic for a blood test (we were just there in late May) but still, I can't shake the worry off. That's another thing Wendell keeps reminding me: that particular worry will never end.

We had our nieces down this weekend for a visit along with our grand-niece. What fun to have girls in the house! We're looking forward to more family stuff in July. I just love summer :o)

Tomorrow and Tuesday are the annual Gold Ribbon Day events in Washington, DC to raise awareness and lobby for more research funding for our kids. I'll be there again - we just keep on plugging away.

Please say a little prayer that all is well with Kevin's bone marrow and this is just rough boy play....

Thanks for checking in on him.

Love,

Lisa

Friday, June 15, 2007 11:15 PM CDT

Could you please sign this petition? THANK YOU!

Patient Protection and Innovative Biologic Medicines Act of 2007

Dear family and friends,

We've been busy - good busy! Kevin's last day of school was yesterday, meaning he's now a 9th grader! Before that, his 8th grade formal dance was Tuesday night. Here are some pictures before he left:

We weren't able to find the baby blue ruffled tuxedo that he thought he wanted, but he was able to fit into his suit - he thinks he's HOT. Well all of them do. ;o) They had a great time. Afterward, the boys met up with the girls again at our local ice cream hangout:

What a great way to end the school year, huh?

We've had a visitor this week under our bird feeder:

Photo Sharing and Video Hosting at Photobucket

this is one of four baby foxes (kits?) that come with the parents to eat the stale goldfish we leave for the birds. So cute!

Somehow, when we were taking pictures of Brian's graduation, I missed Bops (aka my dad) with Brian. The guys could care less about pictures, but *I* do:

Thanks for checking on us. Please continue to pray for Ashley. Have a great weekend.

Love,

Lisa

Friday, June 15, 2007

Dear friends & family,

I'm planning to update this weekend, but in the meantime could you please sign this petition?

Patient Protection and Innovative Biologic Medicines Act of 2007

Many thanks!

Love,

Lisa

Sunday, June 3, 2007

Dear family and friends,

Kevin is still fighting a sinus infection, but otherwise things are good in the Tignor household. He has 7 days of school left, and is looking forward to attending the 8th grade formal on June 12th. I have no idea if it will actually happen, but he's talking about wearing a baby blue ruffled shirt tuxedo! OMG I'm back in the 70s!

Brian starts his new job tomorrow, complete with health insurance, dental & life insurance, 401K, etc. - ! I'm so happy for him, but feel kinda old when I think about my son having his own benefits. :)

I have a request. As many of you know, I'm involved with Candlelighters, which is a parent-run organization for families with children with cancer. We provide educational and emotional support for families, believing that no one should have to face this alone. A group of us old-timers in the area have just started the DC Metro area affiliate of Candlelighters, and we must obtain our own tax exempt status through the IRS, totally separate from the national organization. The application alone costs several hundred dollars, and that doesn't include the professional services of an accountant or a lawyer to prepare the application. So, I'm asking if any of you are willing to donate such professional services free of charge to a good cause. If so, please email me at ltignor@comcast.net.

Thank you!!

Love,

Lisa

Wednesday, May 30, 2007

Dear friends and family,

We're winding down an eventful month for our family, and we had a great Memorial Day weekend with family at the lake. The weather was BEAUTIFUL and we had lots of relatives to play with. (I'll see if there are any pictures worth posting when I get them off the camera.) Brian has a job offer and is negotiating the salary. Today marks our 26th wedding anniversary. Other than the minor sinus infection that Kevin has right now, life is good!

Love,

Lisa

Tuesday, May 22, 2007 10:27 PM CDT

Dear family and friends,

More happy news! Both boys had check-ups today and their blood counts were normal. Kevin is now 18 months off treatment from the relapse therapy and Brian is - well he's almost 9 years off treatment. I feel like we've won the lottery this month. ;o)

All of this is tempered by our friend Ashley's relapse. Please pray that her bone marrow biopsy on Thursday shows she has reached remission. Her family is considering transplant centers - something we have feared many times but have fortunately not had to face.

I'm SO happy to say that FOUR people I know have joined the marrow registry this month! How great is that? THANK YOU, THANK YOU, THANK YOU!

Love,
Lisa

Tuesday, May 15, 2007

What a wonderful weekend! I couldn't have asked for a better early Mother's Day gift on Saturday. Sunday we had a house full of relatives - lots of fun. They all left early Monday morning before we went to work and Kevin to school. Here are a few pictures of Saturday. Brian is packing up the U-Haul today for the move back home. Kevin is so happy!

The white house behind us in the pictures is where Brian lived this year with 5 other guys. They had a great year and I'm sure they'll miss it!

xoxo

Lisa

Tuesday, May 15, 2007

Thursday, May 3, 2007

The National Marrow Donor Program is sponsoring a special free marrow registry program in May, called "Thanks Mom". Usually, it costs $55-60 to sign up as a donor on the registry unless you are a minority, for which donors are in short supply. But for this drive, it's FREE for everyone. The only catch is that you need to sign up through one of their Thanks Mom drives. To become a donor, all you need to do is a cheek swab, no blood required.

I registered last year and was amazed how simple it was - the kit comes in the mail, you use the cheek swabs and return the kit in the mail. How easy is that?

This is from the website: "Anyone between the ages of 18 and 60, in good
health and willing to help any patient is eligible to join, free of charge,
from May 7 through � 21, at a donor drive in their city or by registering online"

This webpage has a link to find drives near you.

Thanks Mom Bone Marrow Drive

Eleven years ago today we were given the news that Brian had leukemia. To say we were devastated is an understatement. We couldn't look ahead to next year, let alone 11 years ahead. We never imagined that in the next 11 years that Kevin would also have leukemia or that the years would test everything we had... But today we're planning for Brian's college graduation, today Kevin is well, and we couldn't be more thrilled.

Still, the worry of a relapse NEVER ends and a transplant would be necessary to save Kevin if he were to relapse again like our friend Ashley.

If you've ever wanted to help us or any other family, please consider taking this opportunity to save a life.

Love,

Lisa

Sunday, April 29, 2007

Dear family and friends,

We said goodbye to a great lady this weekend. Wendell's 92 year old Mamaw passed away on the 26th.

This picture was taken 2 summers ago at the family reunion. Brian was walking her down the sidewalk where we all said goodbye. At her age, we never knew how many more reunions we'd have with her....

Mamaw made it to the reunion again last year, and was planning on it again this July. Sadly, she suffered a stroke last week and passed away peacefully at home - the way she wanted it - less than a week later, surrounded by her 7 daughter and 4 sons. We should all be so lucky to die that way! She had 91 offspring - 5 generations, and had been a mother for 73 years.

When we returned home tonight from attending the services over the weekend, I began to catch up on email and was devastated to learn that our friend Ashley has relapsed again. Ashley was first diagnosed with ALL in 2000, and relapsed in 2003 within a few days of Kevin's relapse. She was on a slightly different chemo regimen but finished treatment within a few months of Kevin, and because her little brother also had leukemia, her mother and I have shared a lot over the years. We've been constant cheerleaders for each other, and now I'm asking - pleading - for prayers on their family's behalf.

Read her blog. One day she's doing great and it seems that life is going to be normal and happy - then out of the blue this damn disease is back. I can't even begin to verbalize how much I HATE HATE HATE cancer.

Another relapse is terrible. Ashley's best hope will be a bone marrow transplant. Please pray that she gets into remission soon and that a suitable bone marrow match is found for a successful transplant.

PLEASE register with the National Bone Marrow Registry if you haven't already. You could save the life of someone like Ashley.

God bless,

Lisa

Tuesday, April 17, 2007

Another video of Brian at Longwood's Spring Weekend...playing Hotel California. Again, he's the one on the left.

I can't stop thinking what a contrast this is to the scene at VA Tech on Monday. Like everyone else, every time I see the horrible images of Monday I'm in tears. My heart goes out to the students and their parents. I'm praying hard for the shooter's family as well as for the victims.

This clip is what they're supposed to be doing at that age.

God bless,

Lisa

Saturday, April 14, 2007 10:22 PM CDT

Here's one of the videos I took from the concert at Longwood today. That guy on the left is my Brian. On the right is his housemate and the singer/songwriter, Brian Simms. They were so nervous at first, but once they got onstage they had a great time!

Monday, April 9, 2007 10:13 PM CDT

Dear friends and family,

Kevin has been feeling good and enjoying Spring break. When he wasn't hanging out with friends at our house and eating everything that wasn't nailed down, he went to a couple of sleepovers, went to the movies, went skateboarding (lots of bruises to show for it), and even went with some friends into DC to do some sightseeing. They didn't get to the U.S. Mint like they'd planned, but instead went to the Smithsonian, the National Art Gallery, the Lincoln Memorial, the WWII Memorial, some others I can't remember, and finally to the Navy museum (memorial?). There, he was able to type my dad's name into a computer and up popped his picture and career history. Kev was very impressed with that! Of course, they also enjoyed ESPN Zone and the Farmer's Market - with boys this age they can't go very long without FOOD.

We had a very nice Easter, visiting the lake with my parents and Chuck's family. Brian & Kim drove up from college for the weekend too. It's so nice having everyone together and healthy. NEVER take that for granted.

Tomorrow it's back to school and work....

On the medical front, next week Kev has more tests: a DEXA scan (for osteoporosis), an ultrasound (for the gallstones) and a chest xray (routine check for mediastinal mass). I'm not sure why Dr. P ordered that last one, but I'm planning to email her and ask. We've never done that for Brian or Kevin in the past when they went off treatment, but maybe that's some new protocol or maybe just for kids who have relapsed? I'm not too keen on more radiation - heaven knows that kid should be glowing in the dark by now.

Next weekend is Spring weekend at Longwood and Brian is supposed to play guitar - on stage. How cool is that? He'll be playing Hotel California, plus two songs written by one of his housemates. I'd love to hear them, so we may just drive down to Farmville for the day.

Thanks so much for checking on us.

Love,

Lisa

Monday, April 9, 2007 10:13 PM CDT

Wednesday, March 28, 2007

Dear family and friends,

Thanks for the well wishes and prayers. Kevin went back to school on Monday, but didn't feel back to normal until today...it wasn't the norovirus, but the sore throat and headache hung on for days after the fever left. I haven't updated because we've been busy catching him up at school! On top of that, last week he was asked by his former tutor who is now the school baseball coach to be manager of the team. He agreed, but already had to cancel out today because of a homework project.

Next week is Spring break here, so Kev will get some R&R. Not sure about Mom & Dad, but Kev will!

Love,

Lisa

Saturday, March 24, 2007

Dear family and friends,

Well, I guess I spoke too soon....Kevin is sick AGAIN.

Thursday evening I met some friends who'd flown into DC for a Candlelighters affiliate conference. I arrived home pretty late and Wendell told me that Kev had a sore throat, headache and body aches. ARRGH!! He'd already had Tylenol and gone to bed, so after some heavy sighs we said some extra prayers but prepared for a long night. At 6:00 a.m. Kev came into our room feeling really awful. He had a fever of almost 101 - big sigh again - so after giving more Tylenol I tucked him back into bed. Wendell decided to stay home with him so I could go to the conference as planned, checking in by phone throughout the day. Before I left, I made an appt at the pediatrician for a strep test...just in case, being Friday and all.

I checked in with them while they were still waiting for the strep results - by then Kev had also thrown up twice - and they said Dr. T thought it could be the dreaded Norovirus, based on the symptoms. UGH! I thought that thing had left town by now! Anyway, Kev was negative for strep and being a virus, we're waiting it out. He has had no more vomiting, but the darn fever was almost 103 at 5:30 this morning when he came in and woke us up again for more pain relief. We've switched to Motrin and that seems to help - his platelets were OK (197,000) at the check up on Tuesday. Since he's eating OK and doesn't seem to have the Norovirus after all, I'm hoping that the fever will magically just *disappear* tonight! I hate the mystery fever. Of course it's bad enough that I'm always on high alert....but when that certain heavy sigh comes out of my husband in the middle of the night, I know he's a little worried too.

The conference ended today, and I came away with lots of great ideas for our newly formed affiliate in DC. We've got lots of work to do, but there's such a need for our services - especially in the other area hospitals not served by Growing Hope. Hopefully we'll get more volunteers to help do all the things we need to do.

Thanks for check in - Please say a prayer for Kevin to recover quickly.

Love,

Lisa

Wednesday, March 20, 2007

Dear family and friends,

Happy Spring!

Quick update - Kevin had his 2 month off-treatment check up today. He's doing great! All blood counts were within normal limits. Dr. P ordered blood chemistries - those results take a bit longer. I can't believe he has been finished with treatment for 16 months now. Time flies when life is normal!

Love,

Lisa

Thursday, March 8, 2007 7:05 PM CST

Dear family and friends,

Another day of no school here in Virginia....at this rate, Kevin will still be in school in July! We really didn't get that much snow, but it was slick anyway. He had fun hanging with his buddies while I went off this morning to the Candlelighters thing we'd already planned.

I think our first meeting went well. Each week we plan to go to a different treatment center - INOVA, Georgetown, Children's, plus the outpatient clinic - bringing tea & goodies and introducing ourselves to the new parents. Anyway, we spoke with about 5 moms today. Heck, even if we only helped one it would be worthwhile!

Next I had to run off to accept a check for Growing Hope from the nice people at Smith Barney. Growing Hope was one of several recipients of the funds raised by their "Tee Off for Tots" event. The people who usually accept this annual gift on behalf of Growing Hope weren't available, so I said I'd do it....yikes. I was a little nervous at first, but I met so many nice people and I left there feeling very happy that I'd been "chosen."

In addition to Growing Hope, checks were awarded to the Carol Jean Cancer Foundation, Medical Care for Children Partnership and the Loudoun Therapeutic Riding Foundation. I definitely made some good connections with representatives from those organizations, and I hope to refer some of our kids to them.

Another wonder-woman I met from SB was Germaine Broussard, aka the "Cookie Lady". PLEASE visit her website: Troop Treats! This lady has been baking cookies for our troops for over three years, and she plans to keep on until all our troops come home. Please send whatever you can to help - she has a list on the website of things she includes with the cookes: personal items like mini-soaps, shampoos, etc from hotels, and snacks, books, etc. There are so many needed items, but the biggest thing that money can't buy and that the guys really appreciate are the notes from home. Notes from children's groups, schools, and "kids at heart" are the things she can't do alone. I was so moved by her dedication, and I promised to tell everyone!

OK - back to Kevin. Tomorrow we have another meeting at school to discuss the recommendations from the neuropsych doc. Wish us luck!

Love,

Lisa

Thursday, March 1, 2007 6:09 PM CST

Dear family and friends,

Today Kevin went to the cardiologist - his first check up since June 2005 and at that time we were supposed to take him in six months. Ooops!

He had an EKG and an echocardiogram and both were normal! His left ventricular ejection fraction and shortening fraction - both things that can be affected by the chemo he got - were normal. We are SO happy to hear that. The right ventricular false aneurysm that was noted the last time and caused so much concern is still there but Dr. Tawfik is not concerned. He said that his heart looks and acts normal otherwise and he has no symptoms. So we will just monitor him every year because of the chemo, because effects from that can come years after chemo is finished. Oh yeah, he measured 4'11 and 3/4" - so 3/4" taller than me now.

We have another meeting set up with the school on March 9th to discuss the neuropsych evaluation.

I think that's about it - we're trying to avoid the nasty bugs going around. It seems every day I hear about the dreaded norovirus or the flu.

Thanks for checking on Kevin. I can't believe we are scheduling his high school classes now and that Brian's college graduation is coming up in May!

Love,

Lisa

Thursday, February 22, 2007 10:39 AM CST

Dear family and friends,

Things are settling down in the Tignor house now that the first flurry of doctor appoints are done. Kev's hormone screening came back with mostly normal results! Also, I noticed this weekend that he has finally grown taller than me. OK, you can stop laughing now...yes, that's not saying a lot, but it is a milestone nonetheless. Dr. Link wants to see him in about 4 months to check growth again. In the meantime, I'm hoping for a huge spurt!

We haven't done anything with the neuro report since the kids just got back to school this week after being off for a week due to ice.

Our local chapter of Candlelighters is still in the process of getting started. We hope to start the parent teas soon and we're getting things together for the hospital care bags. If you live in the area and want to help, give me a call! We're meeting again on Saturday at 10 a.m.

Next week is the cardiologist check-up for Kev.

Thanks again for checking on Kevin and praying for his continued health. Please keep Alexia in your prayers. You may remember that she had typlitis like Kevin when preparing for her transplant. Her family has returned to Duke again and are hoping for a miracle. She relapsed last month after a having the cord blood transplant last year. They have now begun an experimental drug at Duke and can use prayers and good thoughts.

God bless,

Lisa

Thursday, February 15, 2007 9:31 PM CST

Dear family and friends,

I hope you all are hunkered down and keeping warm this week. Tomorrow the schools will be closed here for the 4th straight day due to ice, followed by a 3 day weekend. As you can imagine, the kids are on Cloud 9!

On Tuesday Wendell and I went to Children's Hospital in DC to hear the results and report from the neuropsychologist on Kevin's testing last month. There were no surprises, thank God, just documentation of what we have long suspected. He is a very bright kid that has problems with what are called executive functions, processing speed and memory. There doesn't seem to be any cognitive damage from the chemo (although maybe he'd have been a genius without it?), but the areas of concern are definitely areas that are chemo-sensitive. Those are areas that can be improved with support, so we intend to keep plugging away at them. Very good news when you consider that we had to pour chemo into the fluid that surrounds his brain for over 4 of his 13 years. We are still trying to decide how to proceed with this information as far as the school is concerned.

With all the weather-related closings, I haven't yet heard the results of Kev's growth-hormone levels in the blood drawn last Saturday. Hopefully the endocrinologist will call and we'll know more soon.

Last week on ER there was a patient who had leukemia and typhlitis. So real it was unreal - down to the septic shock and the drugs they used. I wanted to change the channel but like a train wreck I couldn't. Sadly, the guy (an adult) didn't make it. Had it been a child I don't know if I could sleep that night...it took a few days to get it out of my head.

Musings of a pediatric hematologist-oncologist This blog is written by a doctor at the Dana Farber Cancer Center, whose most recent post "evangelical oncologist" includes a speech that really touched me. We cancer parents/families form such a close bond with our children's doctors and the entire team. He does a good job of answering the question "how can you do that job?" And the description of the air being sucked out of the room really hit home.

I THANK GOD they do that job!

Lisa

Thursday, February 15, 2007 9:31 PM CST

Dear family anf friends,

I hope you all are hunkered down and keeping warm this week. Tomorrow the schools will be closed here for the 4th straight day due to ice, followed by a 3 day weekend. As you can imagine, the kids are on Cloud 9!

On Tuesday Wendell and I went to Children's Hospital in DC to hear the results and report from the neuropsychologist on Kevin's testing last month. There were no surprises, thank God, just documentation of what we have long suspected. He is a very bright kid that has problems with what are called executive functions, processing speed and memory. There doesn't seem to be any cognitive damage from the chemo (although maybe he'd have been a genius?), but the areas of concern are definitely areas that are chemo-sensitive. Those are areas that can be improved with support, so we intend to keep plugging away at them. Very good news when you consider that we had to pour chemo into the fluid that surrounds his brain for over 4 of his 13 years. We are still trying to decide how to proceed with this information as far as the school is concerned.

With all the weather-related closings, I haven't yet heard the results of Kev's growth-hormone levels in the blood drawn last Saturday. Hopefully we'll know more soon.

Last week on ER there was a patient who had leukemia and typhlitis. So real it was unreal - down to the septic shock and the drugs they used. I wanted to change the channel but like a train wreck I couldn't. Sadly, the guy (an adult) didn't make it. Had it been a child I don't know if I could sleep that night...it took a few days to get it out of my head.

Musings of a pediatric hematologist-oncologist This blog is written by a doctor at the Dana Farber Cancer Center, whose most recent post "evangelical oncologist" includes a speech that really touched me. We cancer parents/families form such a close bond with our children's doctors and the entire team. He does a good job of answering the question "how can you do that job?" And the description of the air being sucked out of the room really hit home.

I THANK GOD they do that job!

Lisa

Sunday, February 11, 2007

Dear family and friends,

Kevin had another sick day last week, but other than that things have been going well. We did have a conference with his teachers. For the most part they've been understanding about his various appointments, low immune system and susceptibility to colds and viruses. Sometimes it helps to meet in person to explain to that one teacher exactly what's going on and why he's missing so much school....whew, I'm glad that's over. Kevin is doing OK in school, ending the semester with B's and C's, but it's been a struggle to keep up and make up the work.

On that subject, this Tuesday we'll meet with Dr. Walsh at Children's Hospital in DC to discuss her report and findings after the testing last month.

Yesterday I finally took Kevin to the lab for blood work for the endocrinologist. She called me last week after receiving Kevin's growth chart from the oncologist. It sounds like she's more concerned now that his growth (or lack of) is in front of her on paper! While I felt she didn't convey any urgency (in fact, the opposite) at the appt last month, she seemed more concerned on that phone call. So I hope to hear something more from her this week after she receives the lab results about where we go from here.

I did (finally) schedule Kev's cardiologist appointment for the beginning of March. The next onc appt isn't until late March.

It's been an emotional week. Friday would have been Chassity's 18th birthday. Also, we got the sad news that Alexia relapsed again, just a few months after her family returned from Duke. I really, really hate this disease.

Please pray for these families, and please continue to pray for Kevin's continued remission.

Love,

Lisa

Monday, January 29, 2007 7:50 PM CST

Dear family and friends,

Kevin's visit to his oncologist today went great! His counts:

WBC = 9000
ANC = 6000
HGB = 14
HCT = 40
Platelets = 221,000

Looking pretty normal!! He's just getting over that upper respiratory virus from about 3 weeks ago. I caught it too, and it's taking me just as long to recover...the nagging cough is SO annoying.

We were reminded to get another ultrasound of his gallbladder and think about having that removed this summer if the stones are still there. We've been pretty lax about making Kevin take his Actigall, so I'm going to try to be better about that. Another appointment we need to make is for Kevin's cardiologist. We haven't had him checked in 2 years...

Thanks for checking on Kevin. Please continue to pray that he stays healthy!

God bless,

Lisa

Monday, January 22, 2007 1:12 PM CST

Dear friends and family,

Today is a snow day here. Kevin reminded me that today is the first snow day he has had since probably February 2003! Last year he returned to school in February, but I don't think they had any snow. Wouldn't you know it though, I'd scheduled the endocrinologist appt for today MONTHS ago? On the other hand, had it not been a snow day he'd have missed the Spanish exam. ;o) This way he doesn't miss a thing!

The neuropsych appt went fine last week. It was LONG, but I really liked the doctor and Kevin didn't seem to mind the tests. We treated him to an early dinner at Outback, then rushed home to meet the tutor we hired to get him caught up in Spanish (Mr. B from last year!). We won't know the results of the neuro testing until next month, when the doc will present the report to both Wendell and I on Feb. 13. She assured me that the issues we're noticing are typical of what they see as a late effect of chemo and they'll have a plan for both us and the school.

Today the endocrinologist ordered more testing for Kevin as he has fallen into the 12th percentile for height for his age. Before relapse he was among the biggest kids in the class. In the past 3 years he has grown two inches at most. Total. Two inches per YEAR is normal. We had measured growth hormone before, but it was in the PM and apparently AM is the peak of growth hormone production. If this morning testing we're going to do shows him to be growth hormone deficient, then we'll have to admit him to the hospital for more sensitive testing -- where IV drugs are given to stimulate GH production. If GH is still not sufficient, he would be a candidate for synthetic GH shots. (Shots that cost $30K per year and insurance companies don't like to pay.) Since he's grown a tiny bit in the last year, the doctor believes that his growth was stunted by all the steroids. If so, then that growth is lost and won't be caught up, but he should grow in a pubertal spurt. He probably won't be Brian's height, but then again he won't be as short as I am either! So the bottom line is we really don't know any more than we did before, but at least we're beginning the process. They don't really worry too much until age 14 for boys.

Kev's next appointment is with the oncologist - next Monday. It's been two months and lots of viruses since we were there last. I'm anxious to see good counts!

Please keep Donovan's family in your prayers. That adorable little boy passed away Saturday night, after battling leukemia practically since birth. His young parents and brother have been robbed of so much...

God bless,

Lisa

Wednesday, January 17, 2007

Today the school nurse called to say that Kevin is sick AGAIN and needs to come home...Arrgh! He missed last Thursday, all but an hour on Friday, and now most of today. Tomorrow he'll be at the neuropsych doctor, and Monday at the endocrinologist - the poor kid will never catch up. Not to mention, how is he going to get through 7 hours of testing tomorrow feeling as crummy as he does??

I really, really hate cancer. Please pray for Donovan and his family.

Love,

Lisa

Sunday, January 14, 2007

Dear family and friends:

Kevin was down with another virus and missed 2 more days of school - sore throat, but the strep test was negative thank goodness - and now it's a cold that I've caught...it looks like he's still catching EVERYTHING that goes around school.

We were supposed to go skiing this weekend with Special Love to Canaan Valley, WV but had to cancel. Besides Kevin being under the weather, Brian went back to school today for his final (!) semester of college. Wendell's childhood friend passed away suddenly this week and he attended the funeral in southwestern VA on Friday. So it's been a very different weekend than we had planned.

Thursday we have the appointment for Kevin to have a neuropsych evaluation at Childrens National Medical Center in DC. It's a full day testing - 7 hours - with just a short break for lunch. I'd better bring a good book or two.

I'm trying to prepare for whatever they have to say. I know he's extremely bright and a gifted writer, but he's been struggling lately to stay organized and focused...something that can be the result of the years and years of chemo poured into his body and brain.

Now that I've resolved to tackle all these post-treatment doctor appointments I just want to stick my head back in the sand!!

God bless and thanks for checking on us,

Lisa

Thursday, January 11, 2007

Monday, January 8, 2007

Dear family and friends,

I hope that your holidays were bright and full of love and laughter. We were SO happy to have everyone healthy and at home this year! Wendell and I took off from work from Christmas to New Year's so we had time to relax and recharge. Kevin got almost everything he wanted and had lots of fun hanging out with his friends over the break. Brian has been home since Dec. 15 on his winter break from college, and in between his weekend job as a doorman (gee, they used to call that a bouncer...), his girlfriend Kim has visited us from Richmond a few times. Tonight he is taking advantage of the nice weather and went camping with some of his buddies. Last weekend he visited his Uncle Rick and did recorded some music with him. Brian will be going back to school next week - for his FINAL semeseter! I still can't believe how fast those years flew....my baby is grown up.

Now that we're back to reality after the holidays, one of my resolutions this year is to do all of Kevin's follow-up appointments that I sort of blew off last year....

Jan. 18 he has an all-day neuropsych appointment and testing, Jan. 22 he has an appointment with an endocrinologist regarding the growth issue, and then Jan. 30 he's back to the oncologist for his bi-monthly checkup. I still have to make an appt with the cardiologist.

Thanks so much for checking in on Kevin.

Love,

Lisa

Friday, December 22, 2006

Please pray for the Flint family, whose 17 year old daughter Chassity left us on Monday after battling neuroblastoma for over 3 years. Chassity was an exceptional girl who lit up every room and made sure everyone smiled....she will live forever in our hearts. I really, REALLY hate cancer.

Tuesday, December 12, 2006 1:33 PM CST

Dear family and friends,

Kevin's strep test was positive. Today he is feeling better now that he's on antibiotics. Tomorrow I'm hoping he's back to school.

Yesterday I posted this:

I wanted to share something with you. I've wanted to join the bone marrow registry for years, but for one reason or another haven't done it....there always seemed to be a crisis in our own family! Well, you can do it ONLINE now - pay $52 (tax deductible) and they will send you a kit that contains 4 cheek swabs just like CSI! You just send the swabs back by mail and within 5-6 weeks you're added to the registry! HOW MUCH EASIER CAN IT BE?? I received mine in about 3 days, and consider it a Christmas gift to myself. Heck, I only have 15 years left to be a donor! I'm hoping I can save a life before I'm ineligible.

Check it out: National Marrow Registry

Today I received an email from Michelle, whose 16 year old daughter is a survivor of AML. She signed up after checking on Kevin. She made my day!!

I personally think that every able-bodied person should be on the marrow registry. Certain racial and ethnic groups are under-represented on the registry, mean people with those inherited traits have a tough time finding a donor.

If you decide to register, please let me know!

Love,

Lisa

Monday, December 11, 2006 9:19 AM CST

Dear family and friends,

I'm home from work today because Kevin is sick again...

He has a bad sore throat but so far no fever. Friday he felt sick at school, but that was his stomach and thankfully it didn't last too long. The same thing happened the Friday before, so of course I do worry about his gallstones acting up. But as long as he continues to catch every bug that comes down the pike, I'm afraid to even THINK of doing the gallbladder surgery. Obviously his immune system is still not up to par...somehow the IgG test didn't get done at our last appointment, but I'm guessing it is still very low.

I wanted to share something with you. I've wanted to join the bone marrow registry for years, but for one reason or another haven't done it....there always seemed to be a crisis in our own family! Well, you can do it ONLINE now - pay $52 (tax deductible) and they will send you a kit that contains 4 cheek swabs just like CSI! You just send the swabs back by mail and within 5-6 weeks you're added to the registry! HOW MUCH EASIER CAN IT BE?? I received mine in about 3 days, and consider it a Christmas gift to myself. Heck, I only have 15 years left to be a donor! I'm hoping I can save a life before I'm ineligible.

Check it out: National Marrow Registry

Thanks for checking on Kevin. Although I know this sore throat is probably another normal bug he has picked up due to his low immune system, I can't stop that nagging little worry in the back of my head....he has had a lot of strep and coincidentally had it a few weeks before his relapse.

Please pray that he's feeling better and back to school soon.

Love,

Lisa

Friday, December 8, 2006

Dear familiy and friends,

Things are going pretty well. Kevin is having to work a little harder in school to keep up, but we hope that's a temporary and normal problem thing and not something related to treatment.

The bone age result wasn't bad, but wasn't exactly what we'd hoped for. If the xray had shown his bone age to be younger than his chronological age, that would explain the lack of growth. Instead, it agrees with his chron age. That means we're off to the endocrinologist with all the test results to see what she says. And I may get 2nd and 3rd opinions...Unfortunately the first available appt is not until January 22. So we wait.

In the meantime I've contacted all my cyber-friends whose children have had growth issues, to get their perspective on using growth hormone or other available options. Growth issues and other late effects after cancer treatment differ from normal children, so it's great to have the network to tap into.

Although it absolutely stinks to have to deal with late effects, I know just how blessed we are to have both boys...

My heart just breaks for Baby Donovan's family. Melissa, Darren and Dylan are desperately praying for more time with their precious son.

Everyone's hero from Kevin's clinic, Chassity is not doing well at all. We got to see Chassity last month at her celebration of life party, and we knew that was really goodbye...but even so it is gut-wrenching to know that this really is "it" for her... at 17 years old.

Please pray for Chassity and Donovan's families as they face the holidays with such fear and sadness.

Love,

Lisa

Tuesday, November 28, 2006

Dear family and friends,

Happy Thanksgiving! I hope that yours was as nice as ours was. We had a wonderful week full of family and friends - Mimi & Bops, my brother Chuck & family and my cousin Melissa & her husband Steve even came from California. It was a nice relaxing holiday without the fear of infection or cancer -- full of lots of food and lots of laughter.

Last week we marked Brian's 8th year since ending treatment for leukemia and one year since Kevin's chemo ended for the second time. We can't ask for anything more!

Today I finally had a chance to take Kevin up to Fairfax Hospital for an xray to determine his bone age. No sooner had we arrived back home, the phone rang and they said we'd have to come back for another. Since it was too late and I work tomorrow, we'll try again on Thursday. The technician only took an xray of his wrist. The radiologist needs the hand AND the wrist...oy.

The results are in from the hormone testing, and it appears - at least initially - that Kevin's growth is just delayed. We'll know more when we get that xray.

Thanks so much for checking in on us.

Love,

Lisa

Friday, November 10, 2006

Dear family and friends,

Kevin had his ONE YEAR off treatment appointment earlier this week! The year has really flown by, and it's another happy milestone for us. :o) The off-treatment anniversary for both Brian and Kevin comes at Thanksgiving ~ Brian's is 8 years and Kevin's is one. No question what we're thankful for!

On November 7, Kev's counts were unbelievable:

WBC = 13000
ANC = 7360
HGB = 13.4
HCT = 39.2
Platlets= 196,000

The onc isn't worried about the high white blood cells because there is a large percentage of neutrophils, the ones that fight infection. Kevin is just recovering from being sick with a flu-like thing, so hopefully that explains the high numbers. If there were a high number of lymphocytes and low neutrophils, I'd be worried. Besides, the other cell lines were great ~ platelets are back up from 140,000 when he was ill and saw the pediatrician, and red cells (HGB/HCT) are normal. Hurray! However, there is concern again about Kev's lack of growth. We're running some blood tests for testosterone and LH levels and I have to get a bone age xray soon. Depending on the outcome, we may have to take him to an endocrinologist. That would mean looking at the possibility of growth hormone...a thought I've put on the back burner, but yet another late effect worry. Also pending are the IgG levels.

I was doing some filing today - gee, just what I want to do on my day off - and came across Kev's counts from last November. All his counts were in the toilet, and we stopped his treatment about a week earlier than planned. We took a chance and went away to TN for Thanksgiving, with no immune system. Everything went great, and I'm so glad we made the trip. THIS year, there will be no such worries - just good things.

Another rambling thought...sometime on Halloween it dawned on me that Kevin's relapse had happened Oct. 30, 2003. Three years later, and that day had passed and I didn't give it a thought! How great is that? When I roasted pumpkin seeds and Kevin ate every last one of them, we recalled that this time last year when he also ate every one of them, and we almost had to take him to the hospital when his ostomy got clogged up. Wow ~ we've come a loooonnng way this year.

Thanks for checking in on us.

Love,

Lisa

Tuesday, October 31, 2006 Happy Halloween!

Finally, Kevin was well enough to go back to school today....amazing how he was cured just in time for trick-or-treating.....

Seriously, he was very sick and I'm SO glad to see him feeling better. Whatever it was, it seemed a lot like the flu ~ fever for 4 days, along with upper respiratory virus and stomach stuff too....no fun at all.

Here are some pictures from tonight, you can see for yourself that he's feeling better:

Love,

Lisa
~~~~~~~~~~~~~~~~

Thursday, October 26, 2006

Darn...Kevin has been fighting some kind of virus or something since Monday night when he started with fever and chills. Ugh. He's been home from school for 3 days now, and because his oncologist had to cancel the appointment scheduled for the 24th (probably best since he was sick anyway), and today he had a fever and felt even worse, off we went to the pediatrician. Our beloved Dr. T doesn't take any chances. Kev didn't get out of there without a needle stick for a CBC, CRP, two strep tests (rapid one was negative), and a scrip for Augmentin. No word yet on the blood tests. Things don't move quite as quickly in the outside world as they do at the onc's! Poor kid feels really crummy with coughing, sniffling, sore throat, achey, etc. - like the Nyquil commercial. I've already prepared myself (I think) for lousy blood counts, but I'm hoping for a normal kid virus that resolves in a few days. Believe it or not, I'm doing a pretty good job of keeping the worry where it belongs, in the back of my mind. Our onc visit is rescheduled for Nov. 7th. In the meantime, no news is good news.

Thanks for checking on us and keeping Kevin in your prayers.

Love,
Lisa

~~~~~~~~~~~~

Sunday, October 22, 2006

Dear friends and family,

OK, maybe some of you think we're crazy. Heck, some of you KNOW we're crazy! :o)

We might have confirmed that last weekend by heading *toward* the freak record-breaking Buffalo snowstorm and going ahead with our trip to Niagara Falls. Maybe that's why the roads were pleasantly empty?!? Well, we had a great time and frankly from I-90 we didn't see why there was such a fuss. Lots of broken tree limbs, but the roads were completely clear when we drove up on Saturday. We did have some weird weather: moments of hail, sleet, rain, snow...but also some sun. The trees and vineyards were beautiful, and the weather on Sunday was gorgeous! Brian was with us - he was off for fall break - so the boys had a good time cutting up in the back of the van for the 8 hour trip each way.

We arrived in time to do a little bit of sightseeing on Saturday afternoon

took in some night life...

We saw the falls of course the next day

I hope you can see these videos!

and walked behind them,

but also rode the class 5 rapids in a jetboat!

Thanks for checking on us...all is well!

Love,

Lisa

Tuesday, October 10, 2006 10:17 PM CDT

Dear family and friends,

We had two very successful walks for leukemia and childhood cancer. The first was the Leukemia & Lymphoma Society's Light the Night walk held in Manassas at the end of September. We raised over $140,000! Then, last week we had the first annual Vienna Optimists Walk for Growing Hope, which raised over $24,000!

I'm still so excited that the Vienna Optimist Club "adopted" Growing Hope. Growing Hope is a small non-profit organization formed by parents of kids in the clinic where Kevin is treated. Our mission (yes, I'm on the board) is to provide non-medical support to the children during their treatment. Money raised goes to purchase fun stuff like TVs, movies, games and other things to pass the long days at the clinic, pizza parties at the clinic, fun outings like Kings Dominion, plays, the circus, etc. and we provide limited funds when families are financially strapped because of the high cost of treatment. No one receives a salary and all of the money goes to the children. We are SO happy to have these additional funds because the clinic has recently taken on many new patients and we just didn't know how we were going to serve everyone.

Saturday was a horrible day weather-wise, but I was just overwhelmed at the community support we received. Just imagine what we can do on a sunny and warm day!

We're all doing fine. Kevin is doing well but struggling a little with all the school work expected this year. He's still adjusting to that, but I'm sure he'll be fine. Brian is coming home for fall break and we're all going to do something fun.

Thanks for checking in on us.

God bless,

Lisa

Tuesday, September 26, 2006

Update: Kevin's IgG is now 477 ~ whoohoo! Although below 500 is the magic number for getting IgG infusions, and Dr. G suggested we do that, he agreed with me that because of his last infusion reaction we'd forego that this time. I'm happy, Kevin is happy. I forgot to ask him but we could probably stop the 3 days/week Bactrim now!

Last Friday the orthopedic doc removed Kev's cast. After another xray to make sure everything is OK, the doc told him he'd "see him next time." Ughh...

Saturday, September 30 is the Leukemia & Lymphoma Society's Light the Night in Manassas, Virginia. I'll be there again with the childhood cancer awareness quilts from Virginia. The following Saturday, October 7th we'll be at the Vienna Optimists/Growing Hope fundraising walk for Childhood Cancer. If you're able to come, I'd love to see you!

Thanks again for checking on Kevin and praying for Kevin (and Brian's) continued remission.

God bless,

Lisa

~~~~~~~~~~~~~~

Thursday, September 21, 2006

Dear family and friends,

We're doing well. Kevin had another check up this week, marking 10 months off-treatment! After November we can start stretching out the check-ups to every other month. Thankfully, this was a GREAT visit. Kev's counts:

WBC = 5900
ANC = 3300
HGB = 13.5
HCT = 40.3
Platelets = 218,000

His counts haven't been this high since July! We are SO relieved, and would just like to forget all about those stressful days of August. Since CBCs aren't routinely done on them, I have to wonder about healthy children (meaning those without a history of cancer)... how low do their blood counts go when they're fighting a virus?? Other test results will take a little longer. I have to call tomorrow for results of blood work for chemistries and IgG level.

Kev has been busy with his social life after school and on the weekends. He's planning a little party for this Friday night at our house. At last count he had 10 friends coming! That's great - I'm happy he's enjoying himself.

Last weekend Brian came home because he needed tires ($$$) and for a brief visit. As always, it is great to have the boys together at home. Wendell and I love to listen as they play guitar and chat.

Kev has been fighting a cold, but it's JUST A COLD! I also expect that as (if?) his immune system comes back (including the IgG), with it will come his allergies. He always used to have fall leaf allergies, so I'm kind of prepared for that. We'll see.

Thanks so much for keeping Kevin in your prayers. Our friend Chassity has been back in the hospital for a while now, with more tumors. If you're a fan of Pampered Chef products, or if you'd just like to help her family out, please visit her site for details on that.

Love,

Lisa

Thursday, September 14, 2006

Dear family and friends,

Kevin is adjusting to school life pretty well. This week was a little more challenging because he decided to try out for the school soccer team. He's been so excited to be out with his friends, pushing himself hard to make the team. I'm very proud of him! Unfortunately, yesterday the coach made the cuts...only 18 of the 30-odd kids were chosen, and Kevin didn't make the cut. He was OK with it though, as he knew he just didn't have the stamina that the other boys have. He's hoping to get on another soccer team so he can keep playing and stay active. Again, we're so proud and happy that he has come so far - not to mention it takes guts to get out there and try.

Last night was back-to-school night. Wow - it's been a while since I got to go to one of those. It hit me in the hallway, changing classes with hundreds of other parents. I recognized many of them but haven't seen them since elementary school night in 2003! After meeting his teachers, I think it's going to be a good and exciting year. Especially since Kev's at the top of the heap this year at middle school (8th grade)...Brian too, since he's a college senior!

Next week we've got doctor appointments: Tuesday at the oncologist and Friday at the orthopedist where the cast is due to come off. I think the six weeks flew by pretty fast. I'm a little concerned about the many bruises on Kev's legs. I know he's been very active, but I won't be surprised if his platelets aren't in the normal range...worried, but not surprised.

Thanks again for checking in on us. I'm leaving the Pampered Chef fundraiser info for Chassity at the bottom of the in case anyone is interested. I know her family appreciates every little bit.

Love,

Lisa

~~~~~~~~~~~~~~~~~
Pampered Chef Consultant Gina Barnes'
Fundraiser for Chassity Flint
How to order:

1.) Go to my site: www.pamperedchef.biz/ginabwithpc

2.) When you get into my site, click on the button at the bottom of the page that reads "Order Products". It has a picture of the cranberry stones on it. That will take you to a page that gives you two options.

3.) Go to option 1. Already invited to a show? Type "Flint Family Fund" in the first yellow block. Then hit search.

4.) The next page will show "Flint Family Fund" in blue. Click on that, then start shopping!! (Remember to look at all the new products too.)

Other information:

I ask that each person placing an order please choose to have your products shipped to your own home. The last thing Carrie needs to do is deliver boxes. The shipping costs a little more this way, so you may want to combine orders with your friends to share the added cost.

This fund-raiser is a great way for you to get a jump start on your holiday shopping. This is also a wonderful time to pick up those tools you've been wanting for your own kitchen, or entertaining needs. We have many products priced under $15 that are perfect for hostess gifts, or little thank-yous for the people who have been kind to you all year.

When you place your order, you can use your credit card and feel safe knowing it is a totally secure transaction, or you can mail me a check made out to "Gina Barnes" (I have to have it made out to me because The Pampered Chef will withdrawal the money directly from my checking account) and send it to my address. If you wish to pay with a check, I ask that you please have it mailed to me to receive by the end of September. I never have more than $10 extra in my checking account, so I won't be able to cover the cost until your check is received.... :-)

My address: Gina Barnes

18813 Briars Ct

Olney, MD 20832

(301) 570-0206

Once the show closes on Sept 28th, you should expect to receive your products by Oct 10th.

Wednesday, September 6, 2006

Dear family and friends,

Well, Kev survived day #2 of middle school. It's soooo much better than starting mid-year last year! He is really excited about being a big 8th grader. After school his guitar is getting a LOT of play now that the long cast is off. I can't wait to hear him play it with NO cast in a few weeks!

Some of you will remember our friend Chassity. She was not doing well at all back in July, but amazed us all and went home. As you can imagine, the cost of fighting neuroblastoma for almost 3 years is EXPENSIVE. A friend is doing a Pampered Chef fundraiser for Chassity and her family. I hope you can help them out by ordering something - make sure to read the instructions below to make sure that they get credit.

Love,

Lisa

~~~~~~~~~~~~~~~~

Hello Everyone!

I am very happy to be doing this fund-raiser to help the Flint family as Chassity fights Neuroblastoma, an aggressive form of childhood cancer. When this is over, The Pampered Chef will send a check made out to the "Flint Family Fund" and I will also send a check with 100% of my commission to the Fund. This fund-raiser will run until Thursday, Sept. 28th.

There are three ways to help Chassity and family.

#1. Please send this e-mail to all of your friends, family and co-workers. You'd be surprised at how many people who might not know Chassity and Carrie would still be willing to help. We are a kinder society than we get credit for.

#2. Place an order, which I will give you instructions how to do so soon.

#3. Book a catalog show. For every "booking" received for fund-raisers, The Pamepred Chef donates another $3 to the Flint Family Fund. I know it doesn't sound like much, but it can add up. If anyone wants to book a show, I can mail catalogs or the show can be done online, just like this one.

Things to know before placing an order:

We have 60 new products that become available Sept 1st. You can view them now on the site. Check out our new forged cutlery knives, they are GORGEOUS! If you ever have questions about any of our products, please write to me and I will get back to you as soon as I can.

In September, our Cranberry and French Vanilla stones are all 20% off. You can buy 1 or 100, there is no limit to how many you can buy at the discounted price. If you never cooked on a stone, buy one and try it out. If you don't like it, you can send it back in the first 30 days. This will not affect the amount of money going to the Flint family. Let me tell you about how to cook with a stone if you never have. Just tell me in the comments area when placing your order, "this is my first stone."

How to order:

1.) Go to my site: www.pamperedchef.biz/ginabwithpc

2.) When you get into my site, click on the button at the bottom of the page that reads "Order Products". It has a picture of the cranberry stones on it. That will take you to a page that gives you two options.

3.) Go to option 1. Already invited to a show? Type "Flint Family Fund" in the first yellow block. Then hit search.

4.) The next page will show "Flint Family Fund" in blue. Click on that, then start shopping!! (Remember to look at all the new products too.)

Other information:

I ask that each person placing an order please choose to have your products shipped to your own home. The last thing Carrie needs to do is deliver boxes. The shipping costs a little more this way, so you may want to combine orders with your friends to share the added cost.

This fund-raiser is a great way for you to get a jump start on your holiday shopping. This is also a wonderful time to pick up those tools you've been wanting for your own kitchen, or entertaining needs. We have many products priced under $15 that are perfect for hostess gifts, or little thank-yous for the people who have been kind to you all year.

When you place your order, you can use your credit card and feel safe knowing it is a totally secure transaction, or you can mail me a check made out to "Gina Barnes" (I have to have it made out to me because The Pampered Chef will withdrawal the money directly from my checking account) and send it to my address. If you wish to pay with a check, I ask that you please have it mailed to me to receive by the end of September. I never have more than $10 extra in my checking account, so I won't be able to cover the cost until your check is received.... :-)

My address: Gina Barnes

18813 Briars Ct

Olney, MD 20832

(301) 570-0206

Once the show closes on Sept 28th, you should expect to receive your products by Oct 10th.

If anyone reading this is considering becoming a Pampered Chef consultant, I would love to answer any questions you might have. I love the flexibility and FUN in doing this. It works great as a part-time, full-time, or hobby job. If you sign with me, I will give you a present when you qualify.

Thank you for your time. Sorry I took so much of it, but I like to be thorough! Let's all try to help this wonderful family lighten their financial burden. And let's all continue to pray for Chassity as she fights Neuroblastoma.

Thank you again!

Gina Barnes

The Pampered Chef

www.pamperedchef.biz/ginabwithpc

Tuesday, September 5, 2006

Dear family and friends,

Today was a milestone of sorts for Kevin. He attended school on the first day with his classmates for the first time since 2003! He was soooooo nervous last night that he didn't get to sleep until midnight. He was up and out on time this morning, only to wait 25 minutes for the darn school bus. The day got better apparently, and he seems excited about his classes. Well, most of them. He's bummed that he's not taking Algebra I, and he's a little nervous about Spanish I and Band. (I often wonder how we all survived our middle school years without taking high school classes and our high school years without taking college classes???) Anyway, I think he'll be challenged enough by the foreign language, and although the school no longer offers the languages he wanted to take, this one will be better put to use. Wow...listen to me... we're worrying about normal stuff this year!

The holiday weekend at the lake was nice, despite Ernesto. Chuck's family was there, and Kevin got the new, shorter cast that he could swim with! Brian and Kim came on Saturday and we had a little 21st birthday cake on Sunday before they had to head back to school.

I am very sad about Cameron's death. This boy and his family had fought so hard and he was only 14 years old. Please keep this family in your prayers.

Love,

Lisa

Wednesday, August 30, 2006

Dear family and friends,

Again, we are so thankful for your support through our worry last week. We're back to normal now, and getting ready for the start of school.

Tomorrow is a big day - Brian's 21st birthday! He has come such a long way and been through so much in his 21 years. The siblings of cancer kids have their own issues, and they tend to hold them in to protect their already stressed-out parents. Having been both a patient and a sib, we're very proud of how he has handled that. I'm sure both have shaped the kind and compassionate man he has become.

Kevin's cast is getting pretty stinky - we're nearing the 3 week mark for this plaster one - and Friday we have an appointment to hopefully change it to a shorter Gortex cast. Kev is soooo anxious to get back to his guitar - the break such bad timing! No that there is ever a good time, but he had the guitar just a few weeks when this happened. That's the only complaint I hear from him about the broken arm - that he can't play it.

Brian is settled in his new house at school and loving it - Kevin and I have been getting his school wardrobe together - normal, normal, normal! I can't say enough about that! When I think of how different things would be if we'd had bad news last week....well, let's just say I count our blessings every day.

Two of my online support group friends are going through that very hell that I fear so much. Cameron and Donovan are fighting relapse...this, after having already been through transplant. ARRGH!! It makes me so angry that these kids have to suffer so much. Have I mentioned how much I hate cancer??? Please say a prayer for these boys and their families.

God bless,

Lisa

Monday, August 21, 2006 10:31 PM

Dear friends and family,

As you can imagine, we are soooo relieved!!

We didn't sleep much last night, and I woke up at 5:30 from a bad dream this morning. Wendell had already gone to work, trying to get in a few hours before meeting us at the appt. When we got to the clinic this morning, Dr. P was our doc - just as I'd imagined and kind of dreaded. We absolutely love her, but she is the same doc who has given us bad news 3 times! The last few days, as much as I tried to stay positive, I found myself mentally ticking off what we had to do to get ready for a transplant, etc. I've been cleaning and getting the house ready for an inpatient stay here at Fairfax, then all those other arrangements that would need to be made both short term and long term, since we'd have to go out of state for a transplant...it's sick to think that way I know, but I couldn't find anything to support a virus causing counts like that, and Kevin hasn't had any symptoms of sickness either. Two mysterious fevers combined with counts dropping in half every week...well I bounced from being optimistic one minute to thoughts of ALL and then the next minute to secondary AML caused by certain chemos he's had. The thought of a transplant on top of the organ damage he has already really scared me. The tension around here has been horrible.

BUT today instead of *those* kind of arrangements we went out to lunch and then shopping for school clothes. We're exhausted from the stress, but after lots of tears of relief and a little nap, we're ready to move on. Eight grade awaits, and this will be the first time since 5th grade that Kev has been to the first day of school!

Today's counts:

WBC 4200
ANC 1000, up from 800
HGB 13.3
HCT 39.2
Platelets 137,000, Up from 54,000!!

Although they aren't stellar, every cell line is up. The onc looked at his slide and although there are atypical lymphs, she didn't see anything like a blast. She didn't see any reason to do the bone marrow aspiration and we don't have to be back for a whole month!

THANK YOU all for praying and sending good thoughts.

Lots of love,

Lisa

Monday, August 21, 2006 9:35 AM CDT

ALL CLEAR !!!!!!!!!!

Kev's counts are higher, so no bone marrow aspiration was needed.

Praise God, and thank you all for your prayers and support. We are elated, exhausted and taking the day off to have fun.

I'll update more later.

Love,

Lisa

Saturday, August 19, 2006

Dear family and friends,

There is no way I can express how much it means to us to have your support during this time. Despite our best efforts to stay busy, we've been beside ourselves with worry. Kevin was feeling perfectly fine, but the thought of what those low blood counts could mean are in our thoughts 24/7. Last night Kev said he thinks his red blood count is probably low, too. He said he was just exhausted...something that in itself wouldn't be such a worry. Together with everything else though, it broke my heart.

We will move Brian and 2 of his friends back to college tomorrow, so the manual labor will be a good thing. We all handle the stress differently, but I definitely need to keep moving and busy.

Please pray very hard that there is an explanation for Kevin's blood counts other than leukemia. Each time the boys were diagnosed, the docs tried to encourage us by saying it may be a virus causing the wacky counts. We've been told that again, so you see why it doesn't go very far...

I know that worry won't change anything, so we're trying not to -- really we are. It's just very hard in light of our history and all that Kevin has been put through already.

I will update as soon as I can on Monday.

Love,

Lisa

___________________________

Monday, August 14, 2006

We went to the oncologist at 8:30 today to get Kevin's pre-op blood counts. On the way there Kevin asked if he had to have a bone marrow...I assured him that we didn't have any reason to do that and not to even worry about that. Then we got his counts. Here they are, two sets just to make sure they weren't a mistake:

finger poke:

WBC = 3500
ANC = 800
HGB = 14.1
HCT = 42.6
Platelets = 54,000

and blood taken from his arm:

WBC = 2700
ANC = 800
HGB = 12.9
HCT = 38.0
Platelets = 59,000

They're much too low to go ahead with his gallbladder surgery scheduled for tomorrow so we've canceled. I don't have to tell you how stressful this is...hoping and praying it's just due to a virus that he still hasn't fully recovered from...but that kicked in the gut/nauseaus/faint feeling washes over me anyway - because we don't want to go into the other reason for a big drop in counts.

Dr. G said he didn't see any cells on Kevin's blood smear that worried him enough to do a bone marrow aspiration today, but we will check again next Monday. We'll make sure he doesn't eat or drink and if the counts continue to be low, we'll do the bone marrow then.

I had to pull myself together quickly because we had to be at the ortho at 9:10 a.m. -- maybe it was good to have something else to focus on. We rushed over there to have his arm set in a cast. He picked a black cast just like last year, but it comes up to his armpit this time. Turns out that he broke the radius plus another small bone this time so he has to be in a long cast for 3 weeks and then they'll change it to a short cast. More than anything else, I think he's bummed that he can't play his guitar. Tonight Kev is out to dinner with a friend and his friend's dad. Brian is coming home from Richmond with his girlfriend Kim.

We're going to try to put the worry aside and live as normally as possible until Monday. Brian moves back to school Sunday, so we plan to try to relax and enjoy this week. Please pray this is just a scare.

Love,

Lisa

Sunday, August 13, 2006

Happy Birthday Kevin!

Dear family and friends,

Kev has been feeling great all week. Good enough to go to Six Flags to celebrate his birthday...and good enough to use his new skimboard on our lake and break his arm. He has had a fantastic 13th birthday weekend...well, all except for that last part!

The following pics say it all - hope you enjoy this slide show!

We'll have to fit a visit to the ortho in between his pre-op tomorrow and the surgery on Tuesday. There's never a dull moment around here, but if this is the worst thing that happens this year, then I'll be very happy!

Love,

Lisa

Monday, August 7, 2006

Dear family and friends,

Thanks so much for your thoughts and prayers. Kevin has been doing well and had a great weekend with the rest of the family. Thursday was a bad day � we didn�t leave the clinic until 5 pm and he was pretty zonked from all the benedryl and other meds he had to counter the IVIG reaction. We told the doc our plans for the weekend included Lake Anna with the extended family � the first time we�ve all been together there in about 8 months. Kev has been feeling just fine during the day, but the fever hit 103.6 in the wee hours on Thursday...

We decided to go ahead with our plans but to have Kevin sleep in the garage apartment or my parents� RV, away from the sick toddlers just to be on the safe side. Kev took a nap at home while I filled the prescription and packed the car. We finally arrived at the lake around 10:30 Thursday night. Along with the Bactrim, Actigall and Zithromax, I decided to give him Tylenol before bed to prevent another fever. Well, either that worked or it�s gone, because after 2 nights of that we stopped it and haven�t seen a fever since (knocking wood�).

We celebrated my little nephew Ethan's 4th birthday and so enjoyed him and his little sister Morgan. They're just adorable. All the kids had a great time together and we had gorgeous weather to boot. Just what we needed after the stress of Thursday. :o) Kevin and Daniel had fun tubing, jet skiing and fishing (they caught a 21 inch catfish!) and all of the cousins had a blast on the slip-n-slide. Wendell took the 5 oldest cousins out to a movie Saturday night and he said it was great hearing them all giggling together in the van. Kev says he is feeling absolutely fine. We were comfortable enough to let him stay an extra night with his cousins even though Brian had to came home yesterday morning for work and Wendell and I came back last night. As any cancer parent (or patient) knows, it's a balancing act between safety and quality of life!

We go back to the clinic on Aug. 14 to check Kev�s counts in preparation for surgery on the 15th. We�re praying we can chalk the low platelets up to a virus and that the infusion of IVIG will give him the boost he needs to get back to enjoying life.

Thanks to everyone praying for Kevin�s health and our frazzled nerves!

Love,

Lisa

Thursday, August 3, 2006 1:49 PM CDT

Dear friends and family,

Well, I must have jinxed us with my last post saying Kevin hasn't been sick despite his low IG...he has woken with a high fever at 4 a.m. for the past 2 days. And to add to the worries, his IG count from last week was 244 - down from 285 two months ago.. It should be at least 500. We're NOT going in the right direction, darn it! So today we arrived at the clinic at 9 a.m. for an infusion of IVIG. I prepared for a long day, but hoped for the best. Nerves are frayed, especially after receiving his counts and seeing the drop since last week. Even though I know these things happen (low IG after chemo, count drop due to fever, etc.), the worry bubbles up to the surface during each little crisis.

Last week's counts:

WBC = 6000
ANC = 3100
HGB = 13.4
HCT = 39.9
Platelets = 182,000

This week's counts:

WBC = 2500
ANC = 1500
HGB = 14.1
HCT = 42.3
Platelets = 100,000

So now his platelets are BELOW normal limits - argh...again not the direction we want to be going.

Dr. P said there were a few atypical lymphocytes on his slide, but nothing that she was concerned about. We're hoping that this is just a virus and he can shake it with the help of the IVIG and zithromax (in case it's not a virus). The little cousins from CA have something, so I'm hoping this is the same thing that they have (that doesn't sound right, I know).

Of course, lest we forget - there is never a dull moment with Kevin. He had a reaction to the IVIG about halfway through - shaking chills and back pain, then chest pain, elevated blood pressure - even though he received premeds and the infusion was tapered slowly. After receiving solumedrol (50 mg) he gradually felt better and after giving a liter of IV fluids his IVIG was restarted. It's now 3 pm and he is still dripping, only at a slower peak rate this time. All is calm again, but we had a little drama for a short time. A little reminder of our past life..

The other problem this presents is whether his counts will be high enough to have surgery on the 15th. We'll have to come back again in a week to check that.

Thanks for checking on us. Please pray for better counts, and for his IG to start coming back.

Love,

Lisa

Thursday, July 27, 2006 7:16 PM CDT

Dear family and friends,

Kevin has been having sooo much fun lately! We haven't been anywhere special this summer other than the family reunion, but he's been busy going to sleepovers, having sleepovers, swimming at Lake Montclair, hanging out in the basement with his buddies and playing his new guitar/early birthday gift!

It really makes us smile to see him having such a NORMAL life these days. It's almost hard to imagine him so sick last year and the year before.

Today more than ever, that thought has been with me. I picked Kev up from his friend's house where they had a sleepover (not sure why they call it that -- there's very little sleeping!). We went for his monthly oncology check-up, and of course my nerves were a little on edge...not really anything in particular, just being there makes me think how quickly our lives could change. A few hours later though, we were on our way home...stopped to pick up his friends so they could go back to the lake...when thunder cut that short a few hours later, the crowd came back to our house for slip-n-slide in the yard. They're having so much fun -- coming in for tacos and then running back out for more. Our yard is going to look like a swamp , but days like this are just perfect.

Kev's bloodwork was all within normal limits. His platelets were up a bit from last month (182,000 now) and I'll have to call Monday to get his IgG levels. Dr. G said he's never seen #s that low - arrgh! With no symptoms (i.e., catching lots of viruses/bugs), we're not going to give him IgG for now and we'll just hope it comes up soon.

My brother and his family arrive from CA this weekend - so we'll be busy catching up with them. This summer is flying!

Lots of love,

Lisa

Monday, July 17, 2006

Dear family and friends,

Here's one picture from our family reunion weekend. Check out the hair!! Kev is concentrating hard on that volleyball - he's very competitive! He spent most of his time playing that or badmitton, swimming, or just hanging with the cousins outside.

We're going on an adventure/obstacle course tomorrow at Hemlock Overlook with the youth group from church. It's going to be 100 degrees, but Kev is really looking forward to it.

All is well with both boys, and we're enjoying the summer.

Thanks for checking in on us.

Love,

Lisa

Monday, July 17, 2006

Monday, July 17, 2006 2:45 PM CDT

Thursday, July 13, 2006

Dear family and friends,

Kevin is doing great! We spent last Friday through Monday in the Appalachian mountains at my inlaws' family reunion. It's always a big crowd and lots of fun staying at Natural Tunnel state park with beautiful mountains. This year was sooo different for Kevin, physically and emotionally. Last year he spent a lot of time alone in our room, but this year he was outside almost 24/7, either playing badmitton, soccer, volleyball, swimming, etc. He was a much happier child and much more social this year. Brian and the older cousins spent lots of time pickin' their guitars and staying up late. Oh, and Nana and David got married while we were there! We now have a grandparent living in Florida, so we'll be visiting them some time later this year. The whole family is moving on with life - even the grandmothers! Mamaw, age 91 now, is doing well in spite of her stroke last year. It was fun to get away and reconnect with the relatives. We're already planning for next year!

Kev's surgery is scheduled for August 15, two days after this birthday, and a few weeks before school starts. It's also about 5 days before Brian moves back to college for his senior year, so guess that's as good a date as any.

We're settling back to our routine this week. I'll try to put some pictures as soon as I can get organized.

Thank you so much for your prayers for Chassity. She is truly amazing and we were all thrilled that she was able to go HOME last week.

Love,

Lisa

Wednesday, July 5, 2006

Dear family and friends,

Kevin is feeling good. He had some friends from school over last week on my day off, and they played all day long - they had so much fun that one stayed til 10 pm! We had a nice quiet visit over the past 4 days at Lake Anna with my parents, the dogs, my aunt and Brian's girlfriend Kim. We ate good food, played lots of watersports and watched the fireworks.

This morning Kevin had his surgical consult with Dr. Askew. She couldn't tell us for sure if she can get through the scar tissue in his belly to do a laparoscopic gallbladder surgery. We decided to go ahead and schedule that for mid to late-August and agreed that she should just close him if it can't be done with the scope. We'll wait until after Kev's birthday on the 13th (he'll be 13!) but well before the start of school.

Chassity is still hanging in there at the hospital. I know her family appreciates your prayers and good thoughts.

Love,

Lisa

Tuesday, June 27, 2006 9:56 AM CDT

Dear family and friends,

I am happy to report that Kev has not mentioned a single pain in his leg. His fever is gone now, and he's left with what is probably just a run of the mill cold & cough.

This afternoon he had his oncology appt for his monthly check up. Everything looks good and his CBC was the normal range. His IgG was not tested again this month as the docs don't expect it to jump this soon. The test done last month showed it to be 285. Normal range is 500-600, so it has a ways to go before he can stop taking the Bactrim 3 days/week. Because he has what looks like a sinus infection and that could be worse with his low IgG, we're giving him Zithromax. Hopefully that will knock out whatever is going on so we can go away this weekend and next. Another thing affected by the low IgG is that he can't get the hepatitis shot until that comes up. The remaining immunizations that need to be re-done will have to wait until next year.

This weekend I received bad news about a good friend from our clinic, Chassity. Chass has been fighting neuroblastoma since Kevin's relapse. Neuroblastoma has a dismal cure rate, but despite the odds we hoped for a miracle for Chass. Throughout her battle, Chass has been the bright spot at the clinic....always the social butterfly, always thinking of others and always ready with her beautiful smile and a goodnatured wisecrack. To know Chass is to love her. Chassity graduated from high school in just three years -- three grueling years of treatment -- at the top of her class! Last month at the pediatric oncology picnic she wore her cap and gown and received her diploma from her tutor, sharing it with her extended family -- her medical team and families battling childhood cancer. It was incredibly heartbreaking to see her decline then, and there are no words to describe it now. I know she is so very tired of all of this and she deserves to rest. Please say a prayer for her peace and comfort.

Love,

Lisa

Saturday, June 24, 2006 11:44 PM CDT

Dear family and friends,

Kevin did go with me last Monday to hang the quilts for the Gold Ribbon Days event. Afterward we went out to a nice lunch (yes, I bribed him), and the zoo. We had a really nice day together, and it was only marred by the leg pain he had BEFORE all our walking at the zoo. For all the time that I say I'm not worried, I am probably just trying to convince myself of that...because at the first possible sign I'm panicked. There is that constant worry that is just kind of a dull worry, and then there is the panicky thing that happens in an instant. That is where I've been a few times this week when Kev said his leg hurt. He insisted it was a pulled muscle, and he *has* been playing outside a lot. He now says it only hurts when he puts weight on it, so that makes me feel a little better. I think.

Kev has been sick today with a fever and what I hope is just a cold. He is stuffy, headachey, with fever and headache, not eating and just lying on the couch with Ginger Ale and a box of tissues. Our next oncology check up is this coming Tuesday.

Thanks for checking on us.

Love,

Lisa

Friday, June 16, 2006 8:12 AM CDT

Dear family and friends,

Today is Kev's last day of school! On Wednesday he received not just one, but THREE awards: Top Student in Language Arts, A's all year in Math and A's all year in Social Studies. He was so surprised to see us there, and even more surprised to get the awards.

Next week I'm going to try to drag him with me to the Gold Ribbon Days events on Capitol Hill. We'll see...

Love,

Lisa

Tuesday, June 13, 2006 2:18 PM CDT

Dear family and friends,

Today Kevin had his appt with the gastroenterologist to talk about gallbladder surgery. The ultrasound shows the stones are the same and the GB looks fine. Based on the latest ultrasound, we want to go ahead with surgery sometime this summer - but only if it can be done by laparoscopic surgery and not open surgery. All of us are concerned about a possible attack of course, but also in the event of another leukemia relapse the last thing we want is another complication to worry about. I *HATE* even putting that thought into words, but the reality is that another relapse is still a worry. A worry we mostly keep way, way in the back of our minds and only deal with when necessary.

My next step is to consult with the surgeon about the amount of scar tissue Kevin has from his previous abdominal surgeries, and whether that poses a problem with laparascopic surgery. For that we have an appt on July 5 with Dr. Askew. If she thinks we can do the laparascopic surgery, I think we'll try to do it in mid-late August between Kev's birthday and when school starts.

Our next oncology check up is June 27.

On a happier note, this is the last week of school. Kev doesn't know it yet, but tomorrow there is an awards ceremony at school for 7th grade and he is getting an award for language arts! A proud moment for any parent, but for us it is especially sweet. Besides the obvious -- he's alive and well! -- he is in extended language arts which is more a more challenging class... and despite all the almost 5 years of poison chemo we've poured into his brain he is still such a bright kid!

I'll need the kleenex tomorrow, I'm sure!

Thanks for checking on us,

Love,

Lisa

Thursday, June 8, 2006

Dear family and friends,

We were disappointed to learn yesterday that today's appointment with Kevin's gastroenterologist had to be rescheduled. Apparently Dr. L had an emergency. His office schedules appts so far in advance, and it's frustrating to have to wait again. I've already waited over 30 minutes on hold this morning trying to reschedule!

Kevin's school year is winding down - his last day is the 16th. I'm still amazed at how well he transitioned back to school this year. We are so blessed!

I'll be attending the Gold Ribbon Day advocacy events June 19-21 on Capitol Hill again this year, and displaying the childhood cancer awareness quilts. It's always a bittersweet time of reconnecting with parents I've met over the years, meeting new familes, seeing the survivors grow up... but also learning each year of more children who have passed away.

Thanks for checking on us.

Love,

Lisa

Friday, June 2, 2006

Dear family and friends,

We're still doing well. Kevin has missed about one day per week of school, due to sore throat, stomach upset and headaches. I did feel better after his check up last week -- his blood counts were all in the normal range, and platelets were a whopping 210,000!

Part of the delay in this update was that the rest of the blood work results took some time due to the holiday weekend. Yesterday I finally got the call about those...it appears that his body needs some more time to repair his immune system, as his immunoglobulin levels are still too low for us to stop giving him Bactrim 3 days/week. We will recheck that at each monthly appt. Also, he will have to be reimmunized for chicken pox, rubella and hepatitis - all the heavy chemo wiped out his previous immunity. The good news is that his pancreas enzymes were normal, so the stomach aches aren't from that, and his calcium and magnesium levels are now in the normal range so he can stop taking those supplements.

We spent Memorial Day weekend with family at the lake, and it was wonderful to see Kevin spending so much time playing ball, fishing, playing flashlight tag with his cousins, riding the jetski with me, going tubing and swimming! He went non-stop until Monday, when too much fun and too much sun finally caught up to him and he needed some rest. The past few years he has spent the summer days indoors, watching TV or playing video games, unable to go swimming, and too weak and sensitive to the heat to go out, so I was one really happy mom! Brian was with us too, and he stayed on until Tuesday so Kim drove up from Richmond to spend the day with him there.

Other family news this week ~ Brian got a job at Red Lobster, and has an interview today for an internship...and Wendell and I celebrated our 25th anniversary! Wow, where did all that time go? It's hard even for us to believe we're old enough for that...and to think that we've been married longer that we haven't! My mom threw us a little party while we were at the lake. It was a beautiful evening, and we were happy to spend it with family. As my dad said, let's hope the next 25 years are easier! The weather was just perfect all weekend long (unusual for Memorial Day) - hopefully that's a sign of more good things to come.

God bless,

Lisa

Friday, May 19, 2006 9:51 PM CDT

Dear family and friends,

Kevin is still feeling fine. No more puking, and no more headaches. The monster bruises are slowly fading from black to multicolored purple. So I'm calmer.

Well, we did Kevin's ultrasound yesterday. No, the gallbladder fairy didn't take away the stones...and his right kidney looks the same...shriveled.

It looked to me, at first, like there were even more stones in the GB than in February! But the stones move around when he does, so it might have just been his position. As the tech moved around, the GB picture looked different.

For some reason the tech also looked at his bladder. The ultrasound order is for his entire abdomen (liver, GB, spleen, kidneys, pancreas), but they've never looked at the bladder before. She had Kev go to the bathroom and then come back to look again - making sure it was emptying completely each time...hmmm, something else to worry about that never occurred to me before!

Dr. V came in with another visiting doc to poke around himself. He said he thought everything looked the same, but he'd have to compare the pictures side by side before making his report.

After the test, we went up to the 5th floor to visit the oncology nurses and let them see how well Kevin is doing. He spent a couple minutes there, but once again didn't want to go anywhere near the ICU. He would love to bump into the staff that took care of him -- just someplace other than the ICU. He has some pretty awful memories of that time and place.

Next Tuesday Kevin goes to his oncologist for his 6 month off treatment tests - lots of them. I'm hoping they'll have the ultrasound report back by then, but the appointment with the gastroenterologist isn't until June 8.

I have decided there is no way to put off the gallbladder surgery much longer. I'll go ahead and schedule it when we visit Dr. L on June 8.

Thanks for checking on us.

God bless,

Lisa

Friday, May 19, 2006 9:51 PM CDT

Dear family and friends,

Kevin is still feeling fine. No more puking, and no more headaches. The monster bruises are slowly fading from black to multicolored purple. So I'm calmer.

Well, we did Kevin's ultrasound yesterday. No, the gallbladder fairy didn't take away the stones...and his right kidney looks the same...shriveled.

It looked to me, at first, like there were even more stones in the GB than in February! But the stones move around when he does, so it might have just been his position. As the tech moved around, the GB picture looked different.

For some reason the tech also looked at his bladder. The ultrasound order is for his entire abdomen (liver, GB, spleen, kidneys, pancreas), but they've never looked at the bladder before. She had Kev go to the bathroom and then come back to look again - making sure it was emptying completely each time...hmmm, something else to worry about that never occurred to me before!

Dr. V came in with another visiting doc to poke around himself. He said he thought everything looked the same, but he'd have to compare the pictures side by side before making his report.

Next Tuesday Kevin goes to his oncologist for his 6 month off treatment tests - lots of them. I'm hoping they'll have the ultrasound report back by then, but the appointment with the gastroenterologist isn't until June 8.

I have decided there is no way to put off the gallbladder surgery much longer. I'll go ahead and schedule it when we visit Dr. L on June 8.

Thanks for checking on us.

God bless,

Lisa

Wednesday, May 17, 2006 10:17 PM CDT

Dear family and friends,

I'm feeling better today about Kevin. His color is great, his headaches and nausea are gone, and I've chalked it up to a virus. The bruises and leg aches are still there, but I'm determined to stay calm.

Tomorrow he'll have an ultrasound of his abdomen to check on those gallstones. What I'd love to hear is that they've disappeared and that his right kidney has reappeared! But I'll settle for no worse and maybe a little improvement on the gallbladder...

Love,

Lisa

Monday, May 15, 2006 10:21 PM CDT

Dear family and friends,

I had a very nice Mother's Day with my parents, Wendell and the boys. I got some mushy tear-jerker cards from the boys and two beautiful hanging plants for the deck. Brian cleared his busy social schedule to spend the whole day with me, and Kevin didn't complain a bit about missing time with his friends. We picked up KFC so neither mom or I had to cook. It really was a pleasant day.

But I guess the good times caught up with Mr. Kevin. The school called me at work today to say he was in the clinic AGAIN - seems I'm almost on a first name basis with the school nurse these days. Headache, nausea and generally not feeling well....Brian picked him up from school and Kev hung out the rest of the day taking it easy. Tonight around 10 pm he threw up, has another headache....did I mention he has the worst bruises you could imagine??? I'm trying not to worry about you-know-what, but inevitably my mind goes there. The biggest bruise happened when he was stretching out a bow (as in bow and arrows) that was way too big for him. He let go, and the thing left a HUGE bruise (fist-sized) on his leg above his knee. Then today, before the nurse called, he was playing basketball in P.E. and fell on both knees. The entire knees are purple now. He has bruises on the tops of his feet from playing soccer in bare feet, and a bruise on his arm from where the ball hit him during a game.

He has no fever, and he didn't have the headache when he woke up...that would really worry me as morning headaches/nausea can be a sign of CNS relapse. The bruises have explanations...I think... next week we have the six month off-treatment check-up scheduled. Hopefully these symptoms are just viral and go away as quickly as they came!

Thursday is sonogram day for Kevin. One thing at a time.

Love,
Lisa

Thursday, May 11, 2006

Dear family and friends,

Well, it's been another busy week. Kids in and out, friends spending the night, staying over for dinner, playing guitars and drums, mountains of laundry and almost daily trips to the grocery store...and I'm loving it! I don't much like looking at the clock at 2 a.m. and realizing the car isn't back in the driveway yet - more worry - but we all have to readjust to living together again, I guess.

Tonight Brian's girlfriend Kim drove up from the Richmond area to spend a few days with us. This is the first time I've met her - Wendell met her when he moved Brian home last week. She made a great first impression - Brian has good taste! I must say, I love my boys but I do like having another girl in the house every now and then. I'm sure we'll see more of her this summer.

Kevin is now learning to play a few things on the guitar now in addition to the continuing drum lessons. Brian is teaching him, so hopefully we won't have two music lessons to pay for.

We just found out on Tuesday that Mr. Kevin is nearsighted and needs glasses now. A few years ago his vision was 20/20, but the doctor said then that most kids had better than that at his age and he'd likely need glasses sooner than his peers. So, here we are.... Do you think he found a pair of frames he liked out of the hundreds they had there?? Of course not. So the search goes on for just the "right" pair.

Next week I have his gallbladder sonogram scheduled for Tuesday the 18th...I think I'm ready to do the surgery when school's out - if that is what still needs to be done. I know I'll feel better when I can put those worries behind us. Today the school nurse called to say Kevin was having chest pain and I had to pick him up early. Those type of calls make me worry about waiting. Luckily, the symptoms went away. Still, if the darn thing is out of there that's one less thing to give me grey hair.

The next oncology check up is May 23. We're looking forward to this 6 month off-treatment milestone.

Happy Mother's Day!

Love,

Lisa

Friday, May 5, 2006

Wendell took off today to move Brian home from college for the summer. We're excited to have him back!

Have a great weekend,

Love,

Lisa

Wednesday, May 3, 2006

Dear family and friends,

Today is a bittersweet day. Ten years ago today, our lives were absolutely shattered when we got the news that our beautiful, athletic 10 year old had leukemia. We were plunged into a foreign world, fighting a war we knew nothing about. Many people compare the fight against cancer to a war -- and the post-traumatic stress that goes with it. There are many similarities. Just think, you're living away from home, in some cases without a support system, facing the possibility of losing your life, fighting an unseen enemy. For a parent, the fight for a child's life is a fight for the life of the family. It's no wonder we have such a strong bond with our fellow soldiers.

But back to today. Ten years ago we were devastated and terrified. We were told it would be two and a half years of treatment, and then five years beyond that before we'd know if Brian was "cured." It is a hard pill to swallow knowing your child may not reach the age of 17.

Well, we've reached beyond that now. Some of the experts have revised that prognosis to 10 years past treatment, but one thing we have learned in this journey is that we need to savor today. It's been a long battle, but despite the physical and emotional scars -- we survived. There are no guarantees, but Brian is here today. Kevin is here today. This is a sweet day, and we wouldn't have reached it without the excellent care of our doctors, the support of our family and friends, and our faith. We are so grateful for every day.

Love,

Lisa

Wednesday, April 19, 2006

Dear family and friends,

Happy Easter! We had a wonderful time with all the relatives visiting last weekend. Kevin was feeling good and it's been quite a while since we were all together at the same time. There's a new 9 week old baby to dote on, and a couple of weddings in the future - so there's much to celebrate in addition to Brian & Kevin's health.

Of course, each day I celebrate the fact that they are alive and doing normal things. Just this week I met a woman on my commute into work who lost her 15 year old daughter to Hodgkin's after a 22 month battle. This is the second bereaved mother I've met commuting. The other mom lost her teenaged son to complications, 2 years post-transplant for leukemia. So while I don't need to be reminded of how lucky we are, I count our blessings once again. What are the odds we'd meet by chance? These moms live within 10 miles of me I'm sure, and work 35 miles away within a few blocks of my building.

Another mom I know from my on-line support group is fighting for her little one's life. Baby Donovan was diagnosed with leukemia at only six weeks old. This little angel had a transplant at Duke almost 6 months ago and is still battling complications. This young family is struggling financially - they have had to move to NC from IN and are juggling bills in both states in addition to caring for Donovan and their older son Dylan. Donovan's father has had to go back to Indiana to find work and his mother is at the end of her rope. Hard to believe but in addition to the stress of life or death issues and medical expenses, these parents have thousands of dollars a month in living expenses to rent an apartment and furniture.....if you have a few minutes to send five dollars to help, they are so grateful.

Thanks for stopping by to check on us. We are enjoying every minute of Spring!

God bless,

Lisa

Wednesday, April 11, 2006

Dear family and friends,

Whew! Another month flew by, and another appointment checked off our list. Kevin had great counts yesterday:

WBC = 5900
ANC = 3400
HGB = 14.1
HCT = 39.9
Platelets.........195,000!!

I'm thrilled to report that he has also grown 1/4 inch and lost a pound since last month. So hopefully this is the beginning of the off-treatment growth spurt we're expecting. He has spring break this week, so he's been spending time with friends, going to movies, sleepovers, etc. - all that social stuff he missed the last two years. It's so wonderful to see him happy.

We'll have lots of company this weekend, as Wendell's family is coming from FL, NY and NJ. It should be lots of fun!

Thanks for checking on us, and Happy Easter!

Love,
Lisa

Tuesday, April 4, 2006 10:13 PM CDT

Kevin received tickets to the DC United opening soccer game held at RFK Stadium against NY Red Bull last Sunday, courtesy of Believe in Tomorrow. He invited his friend Kyle to join us, since Brian wasn't home from college last weekend. It was a beautiful day, and my brother Chuck's family also had tickets so we tailgated with them before the game.

Our seats were awesome ~ in the front row!

Kev in the spirit...
The mascot had just come by in the next pic.

The 2nd half we tied the game 2-2. Afterward, some of the players came over for autographs.

Freddie Adu came over last...

The boys had fun asking him which rap singers he likes and whether he's old enough to drive yet.

You can see how much Kev's hair has grown in this rare photo of him without a hat.

We had a great time - Believe in Tomorrow Rocks!

Love,

Lisa

Saturday, April 1, 2006 11:49 PM CST

Dear family and friends,

We're doing great. Kevin has had a good week at school and has been feeling good. He's got quite a social life now. Grades are slipping a bit because of it, and I struggle with whether to ride him about it or just be happy he's alive and well-adjusted. Some of both I guess!

No doctor appointments for Kev this coming week. Last week it was Wendell's and Jasmine's turn and coming week I'll go.
We take Kev back to the oncologist on April 11 for his monthly check up.

Every day I'm so amazed at how good he looks and feels and how easy the transition has been back to normal life. Our routine is so perfectly boring at times - and I do mean perfectly! Boring is so underrated. I was surfing St. Jude's website tonight and came across something I wanted to share: Katelyn Atwell. What an inspirational story ~ it makes ours seem like a walk in the park!

God bless,

Lisa

Saturday, March 25, 2006 9:32 PM CST

Dear family and friends,

Wow, this week flew! Kev's dental appointment on Tuesday went great. No cavities! When I told the dentist I was surprised, he asked "why, was he eating a lot of bad stuff since I last saw him?" Umm....duh....this is a dentist we've been going to for 6 years. He's well aware of Kev's history, and the fact that we haven't been going for checkups due to the two year relapse treatment taking up all our time....I said no, I'm surprised because of all the puking he did during treatment, etc.. He replied: "Well, fortunately it was acute and not something long term." Gee, I wonder what he'd consider LONG TERM??? Anyway, the good news is no cavities. I resisted educating him about the horrors of cancer treatment.

Friday Kevin woke up feeling bad again. Just a stuffy nose, cough and stomach ache - but probably just a cold. He took some cold medicine and went to school during 3rd period. He was fine the rest of the day, but had the same symptoms this morning. Maybe his allergies have come back??

We're having a quiet weekend here. No extra boys (or dogs) sleeping over, so hopefully Kev will be ready to start the week on Monday.

Thanks so much for checking on us.

Love,

Lisa

Monday, March 20, 2006 8:23 PM CST

Dear family and friends,

We had a busy house this weekend. Brian and his friends came home from Spring Break at Myrtle Beach unexpectedly. Apparently they got tired of eating pancakes because they ran out of money. Besides, the weather turned cold so they headed back to a warm bed and some good food! They also brought their new friend from campus - a big black lab named Charlie. We ended up keeping Charlie at our house for the weekend. It's a good thing they left because we starting getting attached to him. What a sweet dog...

Kevin was busy hanging out here with his friends, too. Unfortunately he overdid it, because he wasn't up to going to school today...he complained of a sore throat, stuffy nose and a headache, with a stomach ache thrown in just to worry me about his gallbladder. Tonight he's feeling better, so I think he's just coming down with a cold. Knowing what his blood counts were last week helps keep the worrying down for a little while.

Tomorrow he has a routine dental visit - the first one in quite a while.

Thanks for checking on us.

Love,
Lisa

Tuesday, March 14, 2006 11:28 PM CST

Dear family and friends,

Whew - another onc appointment has passed, marking another month without cancer!!

Kev's physical examination and counts were good. I did have a momentary scare after a new nurse botched his blood sample and the platelet count was 88,000. WHAT????!! I should have known after watching her squeeze that darn finger practically dry! Fortunately, Mary (one of Kev's favorite nurses from the past 2 years) calmly came into the room afterward to take another sample from another finger. When I asked what was going on, she casually said the machine must have screwed up and they didn't like the number so were re-doing it. Of course I guessed it was the platelets and had a twinge of panic when I thought of all those bruises....but Mary quickly did the CBC and before I got too crazy Dr. P brought in the "real" counts. Kev's platelets were 153,000 which is right about where they were at the last appointment. The other blood counts were great. Whew...a few more grey hairs sprouted today but we've been handed another day without cancer.

We also discussed Kev's lack of growth, but Dr. P said we really can't predict what will happen until at least 6 months off treatment. Kev got so much chemo that stressed his body so much that he had nothing left for growth. He is essentially the same height as he was in October 2003 - maybe half an inch taller. I remember that both he and Brian grew throughout their previous treatments, but of course those weren't as aggressive as relapse treatment. So we wait. The worst case scenario would be that we would consider using growth hormone somewhere down the line.

Our next appointment with the oncologist is in a month. Six months off treatment falls in May. At that time we'll be able to stop the supplements (magnesium, etc.) and pneumonia prevention (Bactrim). That may also be when we test to see if his vaccinations need to be redone.

Thanks for checking in on us and keeping up the prayers!

Love,

Lisa

Sunday, March 12, 2006

Dear family and friends,

What a gorgeous weekend we've had. I hate for it to end. Kevin and friends have been hanging out in a pack, and they've finally gotten out of the house and away from video games for a little while. Friday after school they walked up to the lake and jumped in. Wendell got a call after they were a bit uncomfortable walking back home and wanted a ride...chafing is no fun! Last night there was a birthday party to go to and it was the typical 7th grade boy-girl party. I'll leave it at that! Kev was feeling a little under the weather last night and today.

Tuesday is the monthly check up at the oncologist. Kevin is covered with bruises, but otherwise looks fine. I think the bruises are from having too much fun. I still pinch myself each day to make sure this is really another day without cancer and not a dream.

Brian is away at Myrtle Beach for spring break this week. We're sorry we won't get to see him, but happy he's having fun. Hopefully he'll behave appropriately - my standards that is!

Thanks so much for checking on us.

Love,

Lisa

Thursday, March 9, 2006 9:03 AM CST

Dear friends and family,

Kev has begun taking his new Actigall prescription, and so far I haven't noticed any side effects. I'm praying he doesn't have a gallbladder attack before we take the plunge and schedule the surgery. I can't stop waffling on that decision...

Kev started P.E. at school yesterday, and has been working out at home this week on the treadmill and using light weights (mine). Although he'd like to lift heavier weights, the anthracyclines he received as part of his chemotherapy make heavy weight lifting risky for his heart. He's making progress! Last week he was surprised he couldn't do a single sit-up. He used to do 50-60 in a minute and remembered being one of the best in his class at situps during elementary school. I think that the reality of the toll on his body made something "click". This week - on his own - he's been making a real effort to change that. Yesterday he reported doing 10 situps in P.E. and after school he walked a mile or so (uphill) with his friend to the 7-11. Last night he excitedly told me that walking there was no longer a problem for him! I am happy that this was HIS idea, and something he can be proud of doing on his own.

This weekend he has big plans: a school dance tomorrow, and attending a party Saturday evening.

Happy alomst-Spring!

Love,
Lisa

Thursday, March 2, 2006 10:08 AM CST

Dear friends and family,

Well, it was back to reality yesterday at the GI doctor appointment. Dr. L still seems to be pushing to take out Kevin's gallbladder. He doesn't think it has to be immediate though, and because of that and a few other things I decided to wait a while. We've agreed to do another ultrasound in 3 months, with Kevin taking the drug Actigall twice a day in the meantime. Actigall helps to dissolve gall stones and prevent new stones from forming. Three months will put us closer to summer break. Dr. L doesn't think they will completely go away, but I can hope can't I? Besides, gallstones are sometimes caused by the antibiotic ceftriaxone, which Kevin took periodically over the past two years. That type of stone does go away, and I'm holding onto that thought! He's not, and we both know there are always risks, both with doing the surgery and with waiting. I know that this is a small surgery compared to what he's been through, but that's just it -- he's been through too much already! I just think we need more of a break before going back to the hospital.

Kevin is doing fine with school work, but he's got some organization issues. That's not unusual for boys at this age, but we'll never know how much is due to treatment and how much is just Kevin. Short term memory can be affected by chemo, but he's a very bright kid so he'll overcome that I'm sure. As for his physical recovery, he begins PE tomorrow, for the first time since early in 5th grade. Oh, and the drum lessons continue - he's gotten much better!

Love,
Lisa

Monday, February 27, 2006 9:37 PM CST

Dear family and friends,

This past weekend we went to Wisp Ski Resort at Deep Creek Lake in Maryland. What a great place! While we have driven past once before on a detour from a WV ski resort, we've never had the opportunity to stay at Wisp. Last month we received an invitation to stay at the new retreat for childhood cancer patients and their families, built by an organization called Believe in Tomorrow. We were probably just the third family to stay there - it is that new. I can't say enough good things about the place and the volunteers, as well as the Wisp resort. Kevin did go snowboarding, and had a great time. Since Brian couldn't take any time away from his classes at college, we brought a friend of Kevin's to pal around with. When they weren't on the slopes there was a pool table at the house that got lots of use, as well as a Playstation and lots of DVDs to curl up and watch in front of the fire.

Now that we're done with our fun weekends, it's time to settle down and knock off some of those appointments I've been dreading....Wednesday we'll go to the gastroenterologist and talk about the sonogram from a few weeks ago. Next week we'll go back to the oncologist for the monthly checkup.

I hope to post some of the ski pics up if there are any worthwhile. Thanks for checking on us.

God bless,
Lisa

Tuesday, February 21, 2006 8:50 AM CST

Dear family and friends,

We had a very nice weekend in Canaan Valley, WV ~ but boy was it cold! It snows every President's Day weekend there, and we were not disappointed this year. Brian and his friend Jay drove up Friday night from college. They were delayed by a flat tire, but made it up the mountain on the the donut spare ~ yikes!

Kevin didn't snowboard after all. I'm not sure why, but I guess he just wasn't up to it. He is still has some kind of bug lingering, so maybe that was it. The temps ranged from 16 during the day and -10 Saturday night to 8 degrees on Sunday, but with the right layers we enjoyed great ski conditions. Kevin hung out at the lodge and arcade during the day - he didn't even use the sauna/pool/hot tub this year which is something that he really enjoyed in the past. In any case, we all had fun and the change of scenery is always good.

Next week it's back to doctor appointments - March 1 will be at the GI doc.

Love,

Lisa

Thursday, February 16, 2006 4:59 PM CST

Dear family and friends,

The 24 hour strep test was negative. Kev's usually right about those things, and he was *sure* it was strep this time. For once his early warning system was broken. He is feeling better -- he went been back to school yesterday and confirmation last night. Still tired, but trudged off to school again today. This is first workout his immune system has had in a while!

If all goes according to plan, we'll meet Brian his friend for skiing this weekend. The forecast is for the coldest weather yet this season - brrr!

God bless,

Lisa

Monday, February 13, 2006 1:08 PM CST

Dear family and friends,

Kevin had a great weekend with his friends. Brian caught a ride home from college Friday evening, arriving just in time to go out to dinner. We thought we'd timed it so that Kevin and two friends could go to a movie while we had dinner, but since the movie was sold out we all ended up at a mexican restaurant instead. The diagnosis anniversary was never even mentioned. The boys don't remember those dates anyway. Just the parents.

They came back to the house and hung out, waiting and watching for the snow in between movies and video games. Saturday turned into Sunday, with probably about 6 inches of snow on the ground when they woke up Sunday. Kev finally got to go sledding, after hating me in December when I wouldn't let him go! School is closed today, and he woke with a sore throat so we quickly got an appointment with his pediatrician for a throat culture. Strep is going around - Kevin's friend had it and so did Brian. Luckily, we got in quickly and the rapid test was negative. Probably just viral, but I hope the boys who have been practically living here this weekend don't catch it. Just to be safe, we had another culture sent to the lab for a 24 hour test.

Our pediatrician was surprised to see us after over 2 years! He was even more surprised when I filled him in on all that has happened with Kevin. Poor guy - he diagnosed both Brian and Kevin's leukemia. That's got to make an impression on a doc, especially since we've been seeing him since Kevin was born.

I'm off to re-stock our pantry after having all those boys in the house this weekend! Thanks for checking on us.

Love,
Lisa

Thursday, February 9, 2006

Dear family and friends,

Tomorrow marks 8 years since Kevin's initial diagnosis of leukemia. It seems like such a long time ago - and also like just yesterday. Actually it was probably 8 years ago today that we really "knew"...we'd been to the pediatrician and had blood work and an xray for leg pain. We wanted him to put our fears to rest and have some other explanation. The pediatrician called that evening and said the result of the xray was normal, but although his blood counts were in the normal range, the white count showed 85 percent atypical lymphocytes -- "possibly due to a virus, but you should take him to see Brian's oncologist right away." How could our beautiful healthy looking child be so sick?? How could this happen to another son??? I remember taking the phone to the back of the basement so I could call my brother Chuck and let him know, so Brian and Kevin couldn't hear me crying. I remember trying to hold onto that virus theory -- hearing it from everyone, including the docs and staff even the next morning... before the bone marrow confirmed our worst fears. I can scarcely believe we had two kids being treated for leukemia at the same time.

Sigh, so much has happened since then. But once again we have our beautiful healthy looking son back. What a mix of emotions this day holds. I mourn and celebrate at the same time.

Kevin participated in a discussion at Sunday school where the topic was "when you were brave". He said he was brave when he was 4 and got leukemia. Of course I was suprised at that, because I doubt he knew what that meant at such a young age. I think he's been brave his whole life, but even more so in the past two years.

Kev continues to amaze and inspire us. He's no angel mind you ~ he could be downright spoiled and demanding at times during treatment. Then again, as Wendell puts it, he's been both tortured and spoiled practically his whole life. We often felt he deserved to be spoiled. I'm sure we're not alone in the world of parent of very sick kids. It's a constant battle in your mind: do you give in because he may not be here next week or next month? Or do you stick to your guns because he may just live to be a miserable maladjusted adult? Sigh...You try your best to do the right thing at moment. Depending on the circumstances, we decided to instill the normal rules when we had a normal life. I admit I had my concerns, but in the past month Kev has done such a turn-around that I am constantly amazed.

Monday he received his report card. I'm so proud to say that he has a 3.5 average for this quarter ~ in spite of all the chemo we flooded into his spinal fluid to protect his brain from leukemia. Not bad when you also consider all the school he missed in December being in the hospital.

He's also made huge progress on his drum playing now that we're on a regular lesson schedule. Each day after school he spends hours practicing those drums. Lucky for us, he likes the sound of them with the mesh heads.

We have two weekend ski trips planned for the end of February. Hopefully it will work out that Brian can join us.

If you've read this whole ramble, thanks for checking on us!

Love,

Lisa

Thursday, February 9, 2006

Dear family and friends,

Tomorrow marks 8 years since Kevin's initial diagnosis of leukemia. It seems like such a long time ago - and also like just yesterday. Actually it was probably 8 years ago today that we really "knew"...we'd been to the pediatrician and had blood work and an xray for leg pain. The pediatrician said the result of the xray was normal, but although his blood counts were in the normal range, the white count showed 85 percent atypical lymphocytes -- "possibly due to a virus, but you should take him to see Brian's oncologist right away."

Kevin participated in a discussion at Sunday school where the topic was "when you were brave". He said he was brave when he was 4 and got leukemia. Of course I was suprised at that, because I doubt he knew what that meant at such a young age. I think he's been brave his whole life, but even more so in the past two years.

Kev continues to amaze and inspire us. He's no angel mind you ~ he could be downright spoiled and demanding at times during treatment. Then again, as Wendell puts it, he's been both tortured and spoiled practically his whole life. We often felt he deserved to be spoiled. I'm sure we're not alone in the world of parent of very sick kids. It's a constant battle in your mind: do you give in because he may not be here next week or next month? Or do you stick to your guns because he may just live to be a miserable maladjusted adult? Sigh...You try your best to do the right thing at moment. Depending on the circumstances, we decided to instill the normal rules when we had a normal life. I admit I had my concerns, but in the past month Kev has done such a turn-around that I am constantly amazed.

Monday he received his report card. I'm so proud to say that he has a 3.5 average for this quarter ~ in spite of all the chemo we flooded into his spinal fluid to protect his brain from leukemia. Not bad when you also consider all the school he missed in December being in the hospital.

He's also made huge progress on his drum playing now that we're on a regular lesson schedule. Each day after school he spends hours practicing those drums. Lucky for us, he likes the sound of them with the mesh heads.

We have two weekend ski trips planned for the end of February. Hopefully it will work out that Brian can join us.

Thanks for checking in on us,

Love,

Lisa

Thursday, February 9, 2006

Dear family and friends,

Tomorrow marks 8 years since Kevin's initial diagnosis of leukemia. It seems like such a long time ago - and also like just yesterday. He participated in a discussion at Sunday school where the topic was "when you were brave". He said he was brave when he was 4 and got leukemia. Of course I was suprised at that, because I doubt he knew what that meant at such a young age. I think he's been brave his whole life, but even more so in the past two years.

Kev continues to amaze and inspire us. He's no angel mind you ~ he could be downright spoiled and demanding at times during treatment. Then again, as Wendell puts it, he's been both tortured and spoiled practically his whole life. We often felt he deserved to be spoiled. I'm sure we're not alone in the world of parent of very sick kids. It's a constant battle in your mind: do you give in because he may not be here next week or next month? Or do you stick to your guns because he may just live to be a miserable maladjusted adult? Sigh...You try your best to do the right thing at moment. Depending on the circumstances, we decided to instill the normal rules when we had a normal life. I admit I had my concerns, but in the past month Kev has done such a turn-around that I am constantly amazed.

Monday he received his report card. I'm so proud to say that he has a 3.5 average for this quarter ~ in spite of all the chemo we flooded into his spinal fluid to protect his brain from leukemia. Not bad when you also consider all the school he missed in December being in the hospital.

He's also made huge progress on his drum playing now that we're on a regular lesson schedule. Each day after school he spends hours practicing those drums. Lucky for us, he likes the sound of them with the mesh heads.

We have two weekend ski trips planned for the end of February. Hopefully it will work out that Brian can join us.

Thanks for checking in on us,

Love,

Lisa

Sunday, February 5, 2006

This year marks the launch of the International Union Against Cancers (UICC) World Cancer Campaign focused on childhood cancer. WORLD CANCER DAY, February 4, 2006

Candlelighter's released this Childhood Cancer Photo Essay in connection with World Cancer Day.

Dear family and friends,

We are so happy continue to enjoy normal things. I can't even begin to describe how surreal it feels to come out of the nightmare we had, and step right back into our old life! Thankfully, the transition has been pretty smooth so far, but not without small bumps like last weekend's ski trip ~ Kevin was disappointed his body wasn't cooperating, and he has started to talk about working out to get back into shape. While I think that just keeping up with normal life has been a good start, I agree that more physical activity is a good idea.

Thursday, Feb. 1 we went to the hospital to have an ultrasound of Kevin's abdomen. While we don't have any results from the doctors yet, I could see some things myself. I secretly hoped that the gall stones would miraculously disappear. As far as I can see, they didn't. The kidneys looked the same: the right kidney atrophied due to the septic shock last year and the left one enlarged to compensate (we found this in December). I didn't see any surprises but then again I really didn't expect to. The technician left the room to make sure the radiologist had all the pictures he needed. When she returned she had to take a few more pictures - of that right kidney. I have no idea what that means, if anything.

There are going to be late effects, of course. We do keep those in perspective ~ you have to be alive to have them ~ but it really stinks for Kevin to have to deal with even more health issues after all he has endured.

Just looking at him, you'd never know what Kevin has been through, and I'm so thankful for that. He's just a normal 12 year old kid, but one with a unique appreciation for simple pleasures like school and friends.

God bless,

Lisa

Sunday, February 5, 2006

WORLD CANCER DAY, February 4, 2006

Childhood Cancer Photo Essay

Dear family and friends,

We are so happy continue to enjoy normal things. I can't even begin to describe how surreal it feels to come out of the nightmare we had, and step right back into our old life! Thankfully, the transition has been pretty smooth so far, but not without small bumps like last weekend's ski trip ~ Kevin was disappointed his body wasn't cooperating, and he has started to talk about working out to get back into shape. While I think that just keeping up with normal life has been a good start, I agree that more physical activity is a good idea.

Thursday, Feb. 1 we went to the hospital to have an ultrasound of Kevin's abdomen. While we don't have any results from the doctors yet, I could see some things myself. I secretly hoped that the gall stones would miraculously disappear. As far as I can see, they didn't. The kidneys looked the same: the right kidney atrophied due to the septic shock last year and the left one enlarged to compensate (we found this in December). I didn't see any surprises but then again I really didn't expect to. The technician left the room to make sure the radiologist had all the pictures he needed. When she returned she had to take a few more pictures - of that right kidney. I have no idea what that means, if anything.

There are going to be late effects, of course. We do keep those in perspective ~ you have to be alive to have them ~ but it really stinks for Kevin to have to deal with even more health issues after all he has endured.

Just looking at him, you'd never know what Kevin has been through, and I'm so thankful for that. He's just a normal 12 year old kid, but one with a unique appreciation for simple pleasures like school and friends.

God bless,

Lisa

Tuesday, January 31, 2006

Dear family and friends,

Well, Kevin's weekend didn't turn out quite like he'd hoped. He wanted to come back and tell everyone that he whizzed down all the black diamond slopes....instead he fell on ice and hurt his behind soon after arriving on Saturday. He called us late that night, and after deciding he could wait, we drove to Timberline to pick him up Sunday morning. Poor kid - he's trying so hard to do so many normal things. It's hard for him to accept that over the past couple of years he's lost some of the balance and coordination he had, let alone the strength! I don't think anything is broken, but we're keeping an eye on him. At first he couldn't even stoop down to strap on his board, but by the time we got him on Sunday he was better. Each day he is doing more, so I think he's just bruised. Yesterday he helped his dad finish shingling the garden shed. Today he's back to school and I haven't heard a word about pain.

I did finally get an appointment this Thursday for the ultrasound of his gallbladder. I'm hoping the stones have disappeared and we can check that one off the list.

We'll celebrate my mom's 75th birthday on Friday with seafood night at the Belvoir OC. We're all looking forward to it!

Thanks for checking on us.

Love,

Lisa

p.s. Ashley, we haven't been able to talk Kevin into an off-treatment party yet. You'll be one of the first to hear if we do! We miss the nurses at the hospital, but hope you understand we'd prefer to run into you at the MALL instead of the hospital. :o) Seriously, if there's going to be a party, what would it be without you??

Tuesday, January 24, 2006

Dear family and friends,

Kevin had a check up last week and his blood counts were all in the normal range - woohoo! He, and all of us, are adjusting to him being in school. A big science test he wasn't prepared for last week (he choked), and a class spelling bee to narrow down who would go to competition (he came in 2nd) ~ we're taking it all in stride. Yesterday he came home talking about signing up for a foreign language next year.

He seems happy to have the routine, though he'd never admit it! Believe it or not, he says he misses the doctor's office and he even went as far as saying he prefers that to school! I know in my heart that's not true, but I also know that kind of life is all he's known for over two years so it's natural that he'd miss it. Not sure if that makes sense to the outside world, but somehow it does to me. I'm sure this new normal is somewhat scary for him ~ heck at 12 I was scared too, and I didn't have his history. He rarely talks about it, but last month on the way home from a doctor appointment he did bring up the subject "what if IT comes back." I know that he doesn't dwell on it. Still, it hurts to hear him worry, even briefly.
I have embraced our new normal with both arms. I refuse to dwell on it almost to the point of denial (but reserve the right to fall apart at the least bruise, fever or bone pain)! Way too much of our lives has been spent on cancer. And although I do miss seeing the friends we've made along this journey on a daily basis, I'm trying to keep in touch with them while reconnecting with our friends from before cancer.

Kevin is looking forward to a WV ski trip this weekend with friends, (gulp) without us. I'm happy/worried/excited for him...but in a good, normal way.

When I do take my head out of the sand, I'm scheduling the ultrasound of his gallbladder and the GI doc appt. After that we'll follow up on his heart issue from last summer and do a bone scan. Enough already ~ my head is going back in the sand!

Thanks for checking in on us!

God bless,

Lisa

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday, January 16, 2006

Dear family and friends,

Kevin is doing great! He has 5 days of school behind him now, and I must stay I was impressed with his stamina. He had a "normal kid" week, complete with extracurricular stuff like staying after school with his teacher, going to confirmation class one evening and drum lessons another afternoon. On Friday evening he had two friends sleep over, Saturday we watched the game (boo!), and Sunday after church he and a friend went to see King Kong. Then we had a big Sunday dinner with lots of boys in the house. Brian, Kevin, their friends, Wendell too - with 8 guys I was definitely the queen! Oh, and the cook too, but I loved every minute. They're great kids, and as they get older they just don't stay home enough! Being able to enjoy them without the stress and strain of the next medicine or appointment is such a luxury these days. I really do just sit down in the evening and say ahhhhhhhhhh....!

Brian went back to college today, so we'll adjust again. I think this is the first time in a long time since we've had just the 3 of us here. Our household is getting back to a routine like other families now that the holidays are over and now that the grandmothers aren't here. How we miss them though! They've really become part of our daily lives. We have been SO fortunate to have them take care of Kevin, and us, these past two years.

I've thought a lot about that, especially now that Kevin is out of treatment and I actually have time to reflect on all that has happened. How do you say thank you to so many people who have literally held you up for over two years?? We have so many people to thank, and I don't want to leave anyone out! Our families ~ our parents, brothers and sisters, in-laws, nieces and nephews who have been there in every way for us. If they weren't there in person to hold our hands while we waited for test results, make us eat when we really didn't want to leave Kevin's side, sit and cry with us when we had bad news, make us laugh when all else failed, or help to celebrate the good news... they were on the phone to listen, sending cards to cheer Kevin and lighten our hearts, and praying as hard as they could.

Then there are the countless friends, neighbors and co-workers who did many of the same things our family did, but also tended our yard, took care of our dog, donated blood and platelets, brought us meals, visited us in the hospital, left cards and gifts on our doorstep or in the mail, pampered us when we needed it most, donated to our favorite charities like Caringbridge, Growing Hope, Ronald McDonald House and Leukemia Society...the list goes on and on.

And of course the doctors, nurses and staff at the clinic and the hospital who have become like family to us. Some we have known for almost 10 years ~ Brian's leukemia was diagnosed May 3, 1996. Kevin was not even 3 years old then, and little did any of us know what lay ahead and how well we'd get to know each other! They've seen us at every point on this awful rollercoaster...and we know how much they've suffered when we did and rejoiced when we did. They've seen us through so much ~ and I just can't imagine a more caring group. With all the treatment options in our area, and the chaos of the initial diagnosis, we are so glad we landed where we did!

I thank God for our many blessings, including all of the wonderful people who were moved to help us through this in one way or another. We are forever grateful for your kindness.

Although Kevin is the patient, when a child has cancer his entire family is affected. I'm not sure exactly how Kevin feels about it, but I know he'd agree with many of the things (scars?) in The Survivor Movie. I think each of us can relate to at least some part of it.

Love,

Lisa

Wednesday, January 11, 2006

Dear family and friends,

The third day of school wasn't Kev's best. Seems a couple things went wrong.

First, he wore a questionable t-shirt according to one of his teachers. Hey Matthew - remember the great shirt you brought him from Las Vegas with Lady Luck on the back? Yep, that one caused a little stir, though I thought it was pretty tame and she looks like an old fashioned pin-up girl. I guess he won't be wearing that shirt again!

Next some kids shoved him up against a locker and now he's sporting a bruise with someone's locker combination imprinted on his arm. Couldn't ID anyone though - they just kept cruisin on down the hallway.

Then Kev got in trouble himself for playing around in the halls and bopping his friend Kyle with a book! A teacher saw him and made him stand against the wall and asked him just what the principal had been saying each morning on the announcements. Huh??? Then she thought he had an attitude when he said he was new and didn't know! Kyle tried to explain that they really were just kidding around, but she wasn't buying it and told him to get lost. Not a great third day!

Sigh...those days are coming back to me now. I guess he's been away from school for so long we both forgot all the pitfalls! He'll get back in the groove soon I'm sure.

Today he stayed an extra hour and a half to work with his homebound tutor, then had a half hour break before going to confirmation class til 7:30. Gee, I hope he can get out of bed tomorrow!

OK, I know I promised pics from the holidays, and I've finally taken them from the camera.

Anyone remember Billy Idol??

and Jasmine even got to play Rudolf ~ or maybe she's an angel??
Image hosted by Photobucket.com

...an iPod Christmas!

aww...Nana got a rare moment...and Kevin got the first season of Lost!

are you listening to what I'm listening to??

You cannot believe what a great feeling it is to go to work knowing Kevin is at school. Like everything is in it's place and all is right with the world. Even with the little mishaps at school today, I know it will all work out. These are small ~normal~ problems to have, and I'm so very grateful!

Thanks for checking on us. Hey, did I say it's a great new year?

Love,
Lisa

Tuesday, January 10, 2006

Dear family and friends,

Kevin went to school yesterday for the first time in 26 months! He barely slept Sunday night, he was so anxious. The school was ready for us and offered every accommodation he may need, so the first day went smoothly. They even arranged for him to have a study hall instead of PE for the rest of this quarter (the end of the month). That's for 90 minutes in the morning, so on days he's worn out he can come in late. We actually had to do that this morning he was so tired...yikes, I hope this gets easier for him rather than harder! Oh, and he also has his other activities - drum lessons and confirmation class so we're busy in a different, normal way.

Things are going so well - Kevin managed to avoid getting whatever this bug is I've been fighting for going on week 2 now. Brian and Wendell seemed to get over it pretty quickly, thank goodness. My mom and dad have round 2, week 3 of it and I'm beginning to think it might be the flu they have. Yes, we all had shots.... I just keep hoping and praying that Kev stays healthy. His next appt with the oncologist is next Tuesday. I still have to make the appt with the gastroenterologist to check out that gallbladder problem. Gee - think we'll be lucky enough that it disappeared?? He's eating and feeling great.

Brian's winter break from college ends this weekend. We've gotten so used to having him around, and the time just flew.

Thanks for checking in on us. We're *still* celebrating the New Year ~ can't get enough of "normal" life. Ahhhhh.....so much to be thankful for!

God bless,
Lisa

Thursday, January 5, 2006 5:44 PM CST

Dear family and friends,

I'm sorry to keep you in suspense! I've been down with a cold the past couple of days, and the full panel of test results on Brian weren't back until yesterday.

Everything is fine! Brian's blood counts were perfect, and his blood chemistry panel was too. Of course we're all very relieved - when he's worried it makes us worry even more. When he came back home for winter break, everyone mentioned how thin he'd become. The doctor's records show a loss of 9 kilos (like 20 lbs) since our last visit. I think that was a year and a half ago. Before that, he'd lost about 15 pounds (mostly freshman year weight gain) and was at a good weight. At almost 6'2", 170 is a bit thin, especially when you're not trying! He's always on the go, so hopefully getting him to slow down and EAT some home cooked meals will help.

Kevin is still feeling good and eating well. His teacher and I have been working on getting him back to school and I think that will happen next week. Wow - that's going to be weird after having him home since October of 2003. He has never attended middle school, so he'll have to deal with changing classes and having a locker for the first time - in the middle of 7th grade! Hopefully his friends will help him out.

We're satisfied now that we've begun 2006 with everyone healthy!

God bless,

Lisa

Monday, January 2, 2006 9:34 PM CST

Dear family and friends,

Kevin continues to feel great! It's truly a Happy New Year. He's been eating whatever he wants, and his pancreas enzymes were NORMAL on Friday so Dr. G gave the go-ahead to pull the PICC line. It wasn't bad at all - Kimber gave just one loooonnnng pull and out it came. Kev got a pressure bandage to wear for 24 hours and we were on our way. I'm also happy to report that Kev's blood counts were practically NORMAL on Friday. His platelets were up to a whopping 143,000 ~ just 7000 away from normal range. I don't remember the last time we saw that number. We are just thrilled that his marrow is bouncing back after all the chemo he's had.

We had a little scare with Nana Friday morning involving a hospital visit - possibly a kidney stone - but all is well now and she left yesterday to go home to Big Stone Gap again. We got to spend some time this weekend with my extended family in Maryland before Todd had to go back to California today.

Tomorrow Brian has his check up...and of course I always worry but I guess that will be something I have to deal with forever. I also plan to talk to the school board when they open tomorrow about getting Kevin back to school!

I wish everyone a Happy and HEALTHY New Year! Go Redskins!

Love,

Lisa

Monday, January 2, 2006 9:34 PM CST

Dear family and friends,

Kevin continues to feel great! It's truly a Happy New Year. He's been eating whatever he wants, and his pancreas enzymes were NORMAL on Friday so Dr. G gave the go-ahead to pull the PICC line. It wasn't bad at all - Kimber gave just one loooonnnng pull and out it came. Kev got a pressure bandage to wear for 24 hours and we were on our way. I'm happy to report that Kev's counts were practically NORMAL on Friday!! His platelets were up to a whopping 143,000 ~ just 7000 away from normal range. We are just thrilled that his marrow is bouncing back after all the chemo he's had.

We had a little scare with Nana Friday morning involving a hospital visit - possibly a kidney stone - but all is well now and she is back home in Big Stone Gap again. We spent time this weekend with my brothers and some extended family in Maryland before Todd had to go back to California today.

Tomorrow Brian has his check up...and of course I always worry but I guess that will be forever. I also plan to talk to the school board when they open tomorrow about getting Kevin back to school!

Happy New Year!

Love,

Lisa

Thursday, December 29, 2005

Dear family and friends,

A quick update ~

Kevin has had a good week. He's eating whatever he wants now, and has gained back some of the weight he lost. We had a doctor appointment late on Tuesday afternoon and his blood counts were almost normal!! Dr. W let him take out his own stitches. He was disappointed that they didn't remove the PICC line yet, but because the appt was so late we weren't able to get the pancreas enzyme results until yesterday. They're normal too! So tomorrow morning we'll go back to have the PICC line pulled.

Thanks to everyone for the wonderful Christmas gifts and goodies. I can't remember a year I didn't bake other than this one, so we all appreciate it! I'm way behind on everything, but hope to get some cards out by Valentines Day or so...

Love,
Lisa

p.s. Yes, Ashley - it was an iPod Christmas!

Tuesday, December 27, 2005 11:59 AM CST

Dear family and friends,

I hope that everyone had a Christmas full of joy. I know that WE did. Having the boys home and well was, of course, the only thing I really wanted - and we had that! Kevin has steadily improved and we'd never know that he was sick if it weren't for the tubes sticking out of his arm and the stitches in his belly. He continues to gradually eat more and more and we even skipped the TPN last night. Later today he has an appointment at the doctor so we'll find out how his pancreas is handling it.

Todd & Lori and their adorable kids came flew in from CA on Christmas Eve and stopped by on their way to the lake that morning. Nana drove up and we spent Saturday evening with Wendell's brother Tim, then we had Christmas morning at home, and headed down to the lake on Sunday evening. Chuck and his family arrived there Monday morning, so we had my whole family together this year. Mom & Dad continue to make everything special for everyone. I hope they can rest up soon. We'll have another family gathering next weekend before Todd has to head back home.

Thanks so much for your prayers for Kevin. I hope to get some Christmas pictures of him on here soon. With everything going on, I almost forgot to say that he has bleached his hair!

God bless,

Lisa

Saturday, December 24, 2005

Wishing everyone a Merry Christmas!

Love,

Lisa, Wendell, Brian and Kevin

Thursday, December 22, 2005 11:48 PM CST

Dear family and friends,

Our prayers were answered and we are HOME! Kevin's amylase and lipase dropped again, and the MRCP from yesterday showed there are no stones in the bile duct. So we left the hospital around 1pm today and have been busy bees ever since. Kevin couldn't wait to get a shower at home - that meant we had to change the dressing on the PICC line. Then his TPN was delivered late this afternoon and a home care nurse came out to show me how to use the new pump. This one is much quieter than the ones we've used before so I think Kev will appreciate that tonight! We also have to check his blood sugar during and after the infusion. The docs decreased the time it runs, so now only 12 hours instead of 16 hours a day. We're changing to a nightly schedule, but hopefully this is all just temporary. The TPN was ordered through Tuesday, when we'll go back and have more lab work done to see if he needs to continue after that. In the meantime we can gradually advance his diet to see if he can tolerate food without having pain. Today clears, tomorrow some solid food - low fat only of course, but we have had lots of experience with that. We hope to stretch this good luck out and wait to have another scan of his gallbladder in January. Dr. Liebowitz thinks it will have to come out or else...it could a month or a year, but he thinks we'll have trouble again if it stays.

But thank God - we're all sleeping under one roof tonight and for Christmas!

Kevin is looking well. He has lost 11 pounds but he looks good without it! He couldn't wait to get home to see Jasmine, IM his friends on the computer and wear real clothes now that he's not hooked to an IV the entire day.

We appreciate your prayers more than you know. Merry Christmas!

Love,

Lisa

Wednesday, December 21, 2005 10:24 PM CST

Dear family and friends,

Great news! Kevin's lipase dropped from over 2000 yesterday to 1500's today. His amylase went down, too. Both are pancreatic enzymes that are elevated in acute pancreatitis. They are still pretty high, but we're going in the right direction, thank God. His doctors believe there was a stone blocking a bile duct and that caused pancreatitis. They believe it probably passed through and then the pancreatitis started getting better. There are still stones in his gallbladder, but if they don't move to cause more problems we'll be happy. There are a lots of things that can cause gallstones ~ chemo, pain drugs, not eating, breakdown of blood cells, blah, blah, blah ~ most of which Kevin has had.

This morning the NG tube was removed, because it had been clamped off anyway for the past day or two and Kevin had no nausea. We waited all day for the MRCP and it was finally done around 6pm. I don't have results from that, but if no stones are in the bile duct he's going home tomorrow and he'll be allowed to start over again with clear liquids. He's on TPN now and the PICC line is working well. He'll put up with the bother of another line and no food if it means getting out of there. The TPN will be delivered to the house so we can continue that at home. It's a good thing I didn't have that bonfire after treatment ended last month. I'll be needing those supplies again. We'll have monitor Kev's pancreatic enzymes over the next few days.

Of course, we'll also have to follow up with the gastro doc about the gallbladder after the holidays. But I'll put that thought and other late effects issues aside for now though ~ for now we'll just be thrilled to be under one roof again!

Brian and his friend Sara from college put out my Christmas decorations on Sunday, and the house is looking pretty festive. He even put up the tree and lights, so if Kev is up to it he can finish decorating the tree when he gets home. Between taking care of Jasmine, doing errands for us and visiting Kevin, Brian even found a job for winter break. Unfortunately he starts the day after Christmas! We'll have to squeeze in all the quality family time we can this weekend I guess.

Please keep praying that things stay moving in the right direction for Kevin. We want to get off this rollercoaster for good!

Love,

Lisa

Wednesday, December 21, 2005 10:24 PM CST

Dear family and friends,

Great news! Kevin's lipase dropped from over 2000 yesterday to 1500's today. His amylase went down, too. Both are pancreatic enzymes that are elevated in acute pancreatitis. They are still pretty high, but we're going in the right direction, thank God. His doctors believe there was a stone blocking a bile duct and that caused pancreatitis. They believe it probably passed through and then the pancreatitis started getting better. There are still stones in his gallbladder, but if they don't move to cause more problems we'll be happy. There are a lots of things that can cause gallstones ~ chemo, pain drugs, not eating, breakdown of blood cells, blah, blah, blah ~ most of which Kevin has had.

This morning the NG tube was removed, because it had been clamped off anyway for the past day or two and Kevin had no nausea. We waited all day for the MRCP and it was finally done around 6pm. I don't have results from that, but if no stones are in the bile duct he's going home tomorrow and he'll be allowed to start over again with clear liquids. He's on TPN now and the PICC line is working well. He'll put up with the bother of another line and no food if it means getting out of there. The TPN will be delivered to the house so we can continue that at home. It's a good thing I didn't have that bonfire after treatment ended last month. I'll be needing those supplies again.

Of course, we'll have to follow up with the gastro doc about the gallbladder after the holidays. I'll put that thought and other late effects issues aside for now though ~ for now we'll just be thrilled to be under one roof again!

Brian and his friend Sara from college put out my Christmas decorations on Sunday, and the house is looking pretty festive. He even put up the tree and lights, so if Kev is up to it he can finish decorating the tree when he gets home. Between taking care of Jasmine, doing errands for us and visiting Kevin, Brian even found a job for winter break. Unfortunately he starts the day after Christmas! We'll have to squeeze in all the quality family time we can this weekend I guess.

Please keep praying that things stay moving in the right direction for Kevin. We want to get off this rollercoaster for good!

Love,

Lisa

Tuesday, December 20, 2005 8:28 PM CST

Dear family and friends,

Sometimes it seems like if weren't for bad luck we wouldn't have luck at all! I know things could be worse, and this isn't cancer, but today a sonogram showed that Kevin has gallstones. That's what has caused his pancreatitis. I could just scream and I know he's about to!

Tomorrow he'll have a test called a MRCP that will better tell us if there are stones in his bile duct or not. His pancreas enzymes were even higher today, so please pray for better results on both tests tomorrow. We just want to go home for a little while and enjoy the holidays. If he has to have his gallbladder removed I would like him to be healed up from the last surgery!

I'll update with news tomorrow - hopefully good news.

God bless,

Lisa

Monday, December 19, 2005

Dear family and friends,

A quick update:

Kevin's PICC line was put in this morning. It took a few tries, but it's in now - in his right arm inside the elbow. The xray shows it's in the right place, so his TPN will start later today.

Unfortunately, his pancreatic enzymes are a bit higher than yesterday. At least they didn't more than double like the day before, so hopefully that means things are leveling off and the worst is over?

Still more green bile coming up the NG tube, so the PICC line was inevitable. Now that it's done, Kevin is happy to know he will no longer be a human pin cushion! His veins are tough to find and he's darn tired of all the misses.

Thanks again for taking to the time to check on us. We appreciate the support more than you know. We are concentrating our prayers on getting Kevin well enough to go home for Christmas.

Love,

Lisa

Sunday, December 18, 2005 10:48 PM CST

Dear family and friends,

Phew...Saturday night was a much better night. The NG tube is taking care of most of the bile and Kevin only threw up a few times. He was still a little anxious so we tried Valium and that seemed to help him to sleep. He woke every hour or so, but was able to get back to sleep pretty easily each time.

We'd hoped that because he was feeling better and had no pain that meant the pancreatitis was improving. Unfortunately the numbers don't show that and the stuff coming up the NG tube hasn't stopped either. Today's amylase and lipase (enzymes produced by the pancreas) were more than twice yesterday's. He's still not in pain, and on no pain medication, so that's very good.

As much as none of us wants to do it, tomorrow morning a PICC line is scheduled to be inserted so that we can begin some IV nutrition. If his enzymes are lower than today that plan may be revised, but I'm pretty sure he's going to need TPN regardless. It's been a long time since he has eaten. Luckily he didn't start out as a skinny kid!

I went back and read my journal from last year. It looks like Kevin got pancreatitis at about the same time period -- a week after surgery. Argggh! Even if I'd remembered that, no one would not have predicted it would happen again. After all, he was in bad shape last year. I am hoping that this episode resolves as quickly as it did then.

Kevin's spirits were raised today by Mr. Mays, Brian and Wendell. Mr. Mays is Kevin's confirmation teacher and he brought some things from the class to cheer him up. And the Redskins beat the Cowboys!! woohoo!

Thanks so much for the prayers and good wishes. Kev is really disappointed that he's still here and not allowed to drink or eat...hopefully he can get home in the next few days even if that means he has to have TPN at home.

Love,

Lisa

Saturday, December 17, 2005 11:44 AM CST

@!#$!#$^^&$#%*^*^$&**&(^%&#$@%!$!!!!! Another setback!

Kevin and Wendell had an awful night last night. Wendell called me to come give him a break early this morning. Kev stopped having diarreah but continued to vomit after I left about 8:30 last night. It got so bad that they called me at midnight and we talked about giving him Ativan....my brain wasn't working right and I said I thought it would be OK. NOT! Ativan had him twitching and shaking for 4 hours on top of everything else! The diarrhea stopped, but vomiting continued. Finally at 4 a.m. the xray machine was brought up to his room and it was determined that a portion of his intestine isn't moving. Poor Kevin. His nurse had to insert another NG tube up his nose and into his stomach to suck out all the bile that just won't stop coming. I'm soooooo mad right now. The surgeon breezed by the nurses station last night and never came in to see Kevin - even though he was puking nonstop!

When I spoke with Kev's nurse last night I asked if the amylase and lipase levels were done with the other labs. No. She did add that to the blood tests done this morning and it did show that he has pancreas issues. So I'm mad about that, too. Kevin isn't a typical surgical patient. Last year he had pancreatitis after the surgery (not uncommon I was told then), and he had to be on a special diet even after we went home two weeks after surgery. Two days ago Kevin was told he could eat a NORMAL diet and maybe go home the next day! He should have been given guidelines and should have been put on a low fat diet. Thank God he hasn't felt like eating and we know enough to take it slow and begin with bland stuff. The little bit of whole wheat pita bread he ate is all that his stomach has had to deal with and look what happened....meanwhile, the hospital tray that has been delivered each day is full of stuff that would have worsened the pancreatitis!!

The surgeon that was here last night and didn't come in is off today. Her partner says he'll come in later after he's done with surgery. Lucky for him, I've had some time to calm down. Even so, I've strapped on my big mommy boots and he'll get an earful!

Kev has lost 5 pounds since yesterday and he's weak. His IV rate has been doubled again (it had been cut back when we had one foot out the door) so he's being rehydrated. He's really disapointed that he can't go home and has no date in sight. We all are.

The next issue to solve is nutrition now that he can't eat again. When he had a port, we would have given him TPN (total parenteral nutrition). TPN can't be given through an IV so they are thinking about a PICC line (peripherally inserted central catheter) which is similar to a port or a central line, only more temporary. There is also PPN (partial parenteral nutrition) which can be done through an IV.

Parenteral means: Situated or occurring outside the intestine; esp : introduced otherwise than by way of the intestines (ie, through the veins). With TPN, the patient's nutrients, liquids, etc, are all administered via a tube in a major vein. This may also involve the patient being NPO (nothing by mouth). In PPN, normal food intake is supplemented by a tube in a vein.

I hate the idea of another line being inserted, but on the other hand, Kevin hasn't had a meal since December 8th! It's a good thing that he started out with some extra meat on his bones. I know they've held off so far because we all thought (hoped) he would soon be out of here.

Brian got home from college late last night - thanks to his friend David who drove 5 hours round trip to get him. Thanks David! Hopefully he'll be up here at the hospital later today to lift Kevin's spirits.

Please pray that these are small problems that resolve quickly so that Kevin can go home. And pray for no more complications!

Love,

Lisa

Oh, and speaking of lifting spirits, I should also thank Rick & Laura for bringing Kevin the pull-my-finger-Santa ...and Uncle Chuck for bringing the fake poop. Hey - ya gotta keep your sense of humor, even if it's potty humor! What else when you've had this kind of surgery?

Friday, December 16, 2005

Dear Family and Friends,

Kevin is still at the hospital. He had a busy night, back and forth to the bathroom with little sleep for either of us. We were told to expect diarrhea, but this is ridiculous!

This morning his morphine pump was taken away completely. He hadn't used it much during the night. Still, when he does go to sleep, he whimpers and cries out in pain. He was given the go-ahead last night to start eating, so he forced down one saltine cracker...and some sips of water. This morning he forced another cracker and some more water, but he soon felt lousy. At one point he was so miserable he wished he hadn't had the reversal!! He was weepy, hot, cold, and couldn't tell us if he was in pain or not...just that he felt horrible.

Finally, late in the day Wendell was the first to figure out that some of this was morphine withdrawals....duh - of course! Why didn't we think of that? Because Kev was on so much more for so much longer last year, we didn't give this a thought. I guess each time is different. So now they are trying Kevin on some methadone pills to bring him some relief. Another problem though - an hour after the methadone he puked, a lot.

The main thing is that he can't come home until he can hydrate himself adequately by mouth. He needs to keep taking in as much as is going out...that's a lot to ask someone who is weak and nauseated. He's on zofran too, and we'll keep trying other meds until we can make him comfortable.

We realize this is not a huge deal in light of the bigger picture. It's just getting hard to be patient!

HUGE thanks to Ed, Hannah and Angela for taking care of Jasmine for us this past week! And thank you Evelyn for the yummy cookies, the poinsettia and gift for Kevin!

We are still hopeful that Kevin will come home soon - maybe tomorrow??

Love,
Lisa

~~~~~~~~~~~~~~~~~~~~~~~

Thursday, December 15, 2005

Dear family and friends,

Things are moving along here - I won't go into detail but I trust you know what that means! Even so, Kevin doesn't feel very well. He's still on a clear liquid diet and he feels sick. Later today the continuous part of the morphine drip will be turned off but he will still be able to medicate himself as needed by pushing the button. He's pretty weak but I would be too if I hadn't eaten since last Thursday.

The surgeon said we could possibly go home on Friday. That would be wonderful. I know being at home would help Kevin's spirits, and Brian is due home this weekend after exams.

Ed ~ Thank you so much for taking care of Jasmine for us! She was a happy camper yesterday, I could tell.

God bless,

Lisa

Tuesday, December 13, 2005 10:28 PM CST

Dear family and friends,

Kevin is gradually making his way toward hospital discharge. Today he walked the halls again. Things were going pretty well. Then his IV decided to poop out and his hand swelled up like a marshmallow...EMLA on each arm, a couple of techs and 1.5 hours later, and now he has a new IV in the other hand. During that time he was without morphine and he did OK but he was sure glad to get his pain med back! He does need the IV for fluids and antibiotics too...

The surgeon decided that the NG suction could be turned off now - Kev has had hiccups and burps and the NG fluid has stopped. If he gets through tonight without nausea then he can start clear fluids tomorrow - woohoo! The poor kid hasn't had a bite since Thursday night. What a way to lose those steroid pounds.

So we won't be home by Wednesday like we'd hoped, but oh well.

Angela, Hannah & Sarah ~ Thanks so much for walking Jasmine! We have a lot of paying forward to do...

Love,
Lisa

Monday, December 12, 2005 9:49 PM CST

Dear family and friends,

Kevin is doing well - about the same, which is to say that he's healing but still not able to eat or drink. He's being very patient about that, and I'm impressed. Today he got dressed and walked the halls with Wendell after we had our shift change. Before I left, the surgeon came in and removed the bandages. The incisions look good, and they'll be left unbandaged now. I did notice an area on his side, below the wounds that is a little swollen and pink. Could be fluid - they'll watch it, but no one is concerned.

Still no belly sounds, and he still has the NG tube. We've learned to be patient though!

Thank you for your prayers and support.

Love,
Lisa

Sunday, December 11, 2005 10:46 PM CST

Dear family and friends,

Kevin is doing well. No big changes - he continues to rest and push his pain button for morphine as needed. He gets out of bed several times a day and is getting stronger each time, even though he walks verrrry carefully. He is still not allowed to eat or drink. Not even ice chips until the NG tube fluid runs clear (that's the tube up his nose going into his stomach). We're also waiting for bowel sounds. It will be big news around here when we hear them! Hopefully tomorrow those things will happen, but the surgeon is not concerned.

His fever is down to around 100 even without tylenol today so that's another good thing. He had lots of visitors and phone calls today that I know he appreciated.

After leaving the hospital yesterday I stopped for some Christmas shopping and hoped I wouldn't run into anyone I know...Murphy's law, you know I did! Then I went home last night to my own hot shower and fluffy robe, a glass (or 2 or 3!) of wine to relax and my own comfy bed. Those few luxuries made me feel like royalty! Tonight it's Wendell's turn. I hope he gets the kind of rest that I did.

Kev's counts today:

WBC - 4200
ANC - 3024
HGB - 10.1
HCT - 29.9
Platelets - 91,000

Wendell and I are rotating shifts between work/hospital again. Nana went home yesterday and Mimi will be with us when Kevin comes home. Where would we be without grandmothers?? We're extremely fortunate and thankful for them!

We are hoping to go home mid-week, but we'll be patient. We want Kevin's body well on the road to recovery before we go.

Thanks for checking on us again.

God bless,

Lisa

Friday, December 9, 2005 10:45 pm

Dear family and friends,

We have had a very good day here! Kev's surgery is done and he came through just fine. He's feeling pretty bad but he's getting relief with morphine. No more port, no more colostomy!

More good news ~ some more bone marrow results (not the genetics yet, but..) and so far everything is negative for relapse.

The MRI was finally done last night of his spine, and there isn't anything wrong there either. We still don't know *where* the leg pain is coming from, but he is in so much post-op pain that he hasn't said a word about his leg since the surgery. If the pain disappears then we may never know the source. If it sticks around, then we'll have to keep looking, but for now he's got some healing to do.

Dr. A opened him along the same incision as last year and reconnected his colon. So he has that wound, plus the old ostomy hole and the port incision...all of which are on his right side...OUCH!

Kev has amazed me with his strength once again. He has been up walking to the bathroom already! Tonight he has been spiking temps (103+) and his heart rate is high (160s), but that is not unusual after what his body has been through.

Thank you for praying for Kevin (and us) this week.

Love,

Lisa

Tuesday, December 6, 2005

Wednesday, December 7, 2005

Dear family and friends,

Last night and this morning were some of the worst hours we've ever had. Kevin's leg pain came back even worse last night. It began around 9 pm and we tried extra strength tylenol. At 12:30 I gave him 2 tylenol with codeine and at 1:30 I gave him 2.5 mg of valium. Close to 2 a.m. I called the doctor because I'd run out of ideas to manage the pain and what I'd tried hadn't even touched it. Dr. H was on call and said she'd admit Kevin to the hospital for morphine. She said he'd be kept NPO (no food), in preparation for a bone marrow aspiration in the morning. We got to the hospital around 3 am, but it took a while to get ahead of the pain with the morphine. Around 5 am he was put on a PCA pump with 2 mg continuous per hour and he could push the button for more when he needed it. Finally, we all got a couple hours of sleep - me at the foot of Kev's bed and Wendell in the chair.

The hours we spent waiting this morning - first for the procedure, and then for the results - were the worst. Kevin was as worried as we were about relapse. Dr. G did both a bone marrow and a spinal tap today instead of waiting until Friday during the surgery. He got back to us with the results as soon as he could.

Thank God, he gave us good news!! He said that although the fancy tests will take a few days, he saw only about 1 percent suspicious cells and he's not worried about those. They could still be the result of chemo. And there were lots of other good cells and no leukemic blasts!

Needless to say, we are relieved, elated and exhausted. Kevin's pain is under control now - a bit too much now so we're backing off on the morphine. We still have to figure out the cause, but the news of clean marrow is what counts most right now. We were sick with worry, and mentally planning our next steps if he had to go to transplant....Kevin's fear was unbearable. His last word as he was sedated: "PRAY"

Tonight we're waiting for an MRI of his spine. Dr. G wants to rule out some kind of compression fracture there. Tomorrow night we'll stay here to pump him full of platelets for Friday's surgery.

Today's counts:

WBC = 3500
ANC = 2100
HGB = 11.7
HCT = 34.6
Platelets = 63,000

Although it is possible the pain is from the Neupogen shots, it's unlikely to be such a delayed reaction. His last shot was last Wednesday.

Thank you for waiting and praying with us.

Love,
Lisa

~~~~~~~~~~~~~~~~~~~

Tuesday, December 6, 2005

Dear family and friends,

Kev had a really bad night last night. He had so much leg pain that it was 2:30 am before he finally settled down ~ even though I gave him Tylenol #3 around 11. He hurt so bad that he wanted to go to the hospital at one point.

This morning I was ready to go in to the doctor (a day earlier than our appointment), but he woke up and said it feels fine. He insisted there is no more pain and that he doesn't want to go anywhere. Ugh....I'm wondering if maybe he is scared and doesn't want to know what this is? Anyway, we're back to the original plan to go to the appt tomorrow. There we'll have bloodwork for Friday and see what they think.

Right now Wendell and I are pretty wrung out. Although we had the all clear on Kev's marrow less than a month ago, the on and off leg pain is way too much like the cancer presented! If we can hold out until Friday, there is another bone marrow aspiration scheduled and hopefully we'll be reassured. I just feel like no one is going to put him through a bone marrow aspirate *today* if he claims his leg doesn't hurt anymore. Sigh...so we'll wait and see what tonight and tomorrow bring.

Thanks so much for checking on us.

Love,
Lisa

Monday, December 5, 2005

Dear family and friends,

Kev has been feeling pretty good this week and keeping his normal routine with friends, tutor, church, etc. I continued giving him the Neupogen shots through last Wednesday in hopes that his white blood cells would hold up for this week's surgery. So far his platelets haven't fallen enough to notice bruising or bleeding so I'm hoping those will hold, too.

This morning I got a call at work from Kevin and he was complaining of bad leg pain in his shin... I can't begin to explain what those words do to me. Leg pain was the only leukemia symptom he had both at the initial diagnosis and at relapse, only both times it was in his thigh. Nana is at home with him, and they're using tylenol and a heating pad for the pain. I'm trying to stay calm, but if it continues we're heading up to the doctor.

Deep breaths......

In the meantime, we're anxious to get Friday's surgery over with! I'm thinking of having a bonfire with all the medical supplies we have at home. I can't bring myself to flush his meds though. I keep thinking of them in the water supply and it gives me the creeps! I hear the government is stockpiling Neupogen for use in the event of a dirty bomb attack, so you all know who to come to, LOL.

Thanks for waiting and praying with us.

Love,
Lisa

Monday, November 28, 2005

Dear family and friends,

We had a wonderful Thanksgiving visiting family in Bristol, TN and Lake Anna, VA. Of couse we were ecstatic over Kevin being off chemo! Brian's end of chemo date was just two days earlier than Kevin's, seven years ago. Obviously this is an important holiday for our family. Brian went back to school yesterday but he will be home again in 2 weeks.

We're here at the clinic again. Kevin's white count is better after taking the Neupogen shots, but now his platelets are stinky.

Today's counts:

WBC = 2900
ANC = 2200
HGB = 10.2
HCT = 31.2
Platelets = 7000

So, it will be a long day getting a platelet transfusion. I hope this is just due to a virus like Dr. P suggests. She's been seeing "healthy" children - not cancer kids - who have low platelets and neutropenia due to a virus. They are referred here to rule out leukemia. Whatever it is causing those symptoms in the healthy kids could be the same thing causing it in Kevin. Of course it could also be just tired out bone marrow from all the chemo he has been given for two years.

We're praying these counts stabilize before the Dec. 9 surgery so that goes smoothly. Our next appointment will be Dec. 7 to make sure his counts are good enough.

There is a beautiful little girl named Alexia whose mother is part of my online support network. Alexia is fighting the same thing that Kevin had last year - septic shock brought on by typhlitis. She's in ICU on a ventilator and fighting for her little life right now. I know that her parents Ursula and Ignacio are terrified... I know all too well how they feel. Please pray for her like to many strangers prayed for Kevin last year. Alexia has to beat this before she can make the trip from Argentina to the U.S. for a bone marrow transplant.

God bless,

Lisa

Wednesday, November 23, 2005 11:00 AM

Dear family and friends,

We just got back from our clinic appointment to check Kev's counts, and what a surprise.... I have bad news and I have great news!

First, the bad news....Today's counts:

WBC = 700
ANC = .... (yup, that's the bad news - risk of infection)
HGB = 12.5
HCT = 37.6
Platelets = 51,000

Today blood was also drawn to check for IgG (antibody) deficiency. If low then next week he'll need an IV IgG transfusion. Our next appointment will be Monday morning.

Now the great news..........

KEVIN IS OFF-TREATMENT!!!!!!!!

Because of his zero ANC, we won't be doing his final week of chemo. We'll have to give the Neupogen shots to jumpstart the white blood cell production in his bone marrow, but that's OK. The lab report came back from the bone marrow aspiration and spinal tap done 2 weeks ago and it looks NORMAL!!

I can hardly believe this day has finally come. Seven years and two days ago, Brian finished his treatment. How great is that to have both boys' off treatment dates so close? I felt like we should have stayed in the clinic and thrown a party!

I can't tell you how much the love and support we've been shown by all of you over the course of Kevin's treatmenthas meant to us. We have truly been blessed with the most talented and caring medical team, family, friends and co-workers around. We're so thankful for all of you. No, God doesn't give you more than you can handle. The world does sometimes, but I believe that God brings us through it with people like you.

HAPPY THANKSGIVING!!

Love,

Lisa, Wendell, Brian and Kevin

Friday, November 18, 2005 3:19 PM

Dear family and friends,

We continue to count down the days until the end of treatment - only 2 weeks left! Today at Kevin's appointment his counts were so-so:

WBC = 2500
ANC = 2000 (good due the 5 days of steroids)
HGB = 13.9
HCT = 41
Platelets = 40,000 (what's up with those??? arghhh...)

I know that the bone marrow last week should lay my fears to rest, but until the flow cytometry report is back I can't stop those worries from entering into my thoughts when I see the drop in platelets - again. Trying to stay calm and enjoy the end of treatment here...reminding myself to take deep breaths and not to worry.

Kev isn't feeling too great because his cold has turned into a sinus and ear infection. He's still going to have his nightly 6mp and weekly methotrexate (all 11 pills) though, in addition to the zitromax for the infection.

I had hoped to talk the docs into letting us get away with not coming in for counts next week, but the low platelets nixed that.

On the bright side, tonight he's going to the long-awaited Harry Potter movie!

Thanks again for checking in on us. December 1 is sooo close now!

God bless,

Lisa

Friday, November 11, 2005 12:30 pm

Update - ALL CLEAR!!

Friday November 11, 2005 12:30 pm

Dear family and friends,

Kevin is sleeping off his sedation here at the clinic, after having his spinal tap and bone marrow aspiration. This is his FINAL SPINAL TAP with chemo! :o)

This tap didn't go perfectly, I guess because he has had so many of them. The past few taps have been hard for the docs to do (scar tissue?) and it takes a few attempts to get in the right place. Thankfully, he's asleep during all those pokes, but the spinal fluid should be crystal clear and when it's tinged with blood there are blood cells where there shouldn't be.

I'm waiting on the results, while Kev sleeps off the drugs. He also had vincristine and pentamidine today, and he'll begin his LAST 5 day pulse of Decadron (the lovely steroids that cause the younger kids to eat & scream..the older ones eat and sulk).

Today's counts were pretty good:

WBC = 2600
ANC = 1900
HGB = 13.4 (probably a bit concentrated due to fasting for sedation)
HCT = 39.6
Platelets = 86,000 (whew!)

The bone marrow and spinal fluid should be fine. I'm feeling better just typing those counts! Kevin does have a cold but he's feeling ok in spite of it. He is hoping to go to the movies tonight with a couple of friends. He has even made noises today about returning to school in December (!). I'm all for it. We'll see.

As soon as I have news on the tests I'll post again. Thanks for your prayers this week.

Love,
Lisa

Monday, November 7, 2005

Dear family and friends,

Last week's doctor appointment brought a few surprises. Kevin's ANC was up to 1200, but his platelets were down to 48,000. Hemoglobin and hematocrit were the same as the week before. I did ask about doing a bone marrow aspiration when we do the spinal tap this Friday instead of at the end of treatment. The docs will want to do it at the end regardless, but they'll also do it this Friday if Kev's platelets continue to fall. Ugh - it's always something. Platelets are sometimes the first thing to fall in a relapse, so that thought always puts me on edge.

We ended up at the hospital after the doctor appointment to have Kev's foot x-rayed. He tripped on someone's steps while trick-or-treating and his foot was slightly swollen and painful. With the retreat (and hiking) planned for the weekend, they just wanted to make sure nothing was broken. (Shades of Labor Day and his broken wrist...) Happily, nothing was broken and the retreat was okayed.

Kev had a great time with the church confirmation kids in Luray, Virginia. Wendell and I had a kidless (!) weekend, but kept busy with home projects and tried not to worry. Well, he didn't worry as much as I did: was Kev feeling OK? was he having fun? did he remember to take his chemo? etc. etc. We did take advantage of it and went out to dinner Saturday night - alone! I drove up to the Shenandoahs yesterday to bring a group of the kids back home and the foliage was beautiful! They certainly had great weather. Kev didn't want to leave, and he can't wait for next year. He did miss one night of his chemo pills on Friday night. I had put each dose in baggies with the date/time he should take it. He set an alarm for Friday night...unfortunately he was half-asleep and grabbed the wrong bag. He realized too late (the next night) that he had taken his calcium and magnesium instead of the 6MP. While I don't think missing one night will make or break his remission, I really hate the thought of missing even one night. Sigh...nothing to do about it at this point.

Thanks so much for checking in on us. We're gradually regaining some normalcy!

God bless,

Lisa

Tuesday, November 1, 2005

Dear family and friends,

Kevin's appointment last week was pretty much as I expected. His ANC was 800 on the CBC machine, HGB 12.5 and platelets 99,000. All of those are down - other than the big drop in ANC the others are just slightly down. The physician's assistant who saw us was more concerned than I was though, so he asked us to wait for a manual differential to be done (where the cells are counted by hand to make sure the machine is correct). So after a few hours I said we'd leave and call back for the results. After all, it was a beautiful day and we had increased his chemo dose so I expected the ANC to be lower!

A few hours later we found just that - the actual ANC was 770 which wasn't significant enough to change the course of treatment this week and no bad cells were found either. So, it's been business as usual here.

Kev went trick or treating last night with 5 or 6 friends. He pooped out about 8:30 pm and called me to come pick them up a few streets away. (All of us moms had the same idea and gave the boys our cell phones...boy have times changed!) The boys hung out here in our basement for another hour before heading home. It was great to see Kev having fun again. This week will be busy with other good/normal things: school work, Wendell's birthday (tomorrow), confirmation class, drum lessons and the confirmation retreat this weekend. Oh, and another appointment at the doc on Thursday.

Next week will be Kevin's final spinal tap and final week of steroids and vincristine - woohoo! Another nasty thing crossed off our list. I'm going to ask if we can do his final bone marrow aspiration at the same time, since that would normally be just 2-1/2 weeks later and would save him from having to be sedated again. After that it should just be pills until December 1st!

October 30 marked 2 years since Kevin's relapse. We didn't dwell on that though. We have so many dates now between diagnosis dates, end of treatment dates, date of relapse, surgery, etc. We can't help but remember those days, both bad and good, but we are just thankful that both boys are alive to actually *have* those anniversaries! Each day is a gift.

Love,

Lisa

Click here to go back to the main page.

Click here to view older journal history entries.

----End of History----