Journal History
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Sunday, February 17, 2008 1:20 PM CST
Hi,everyone! I hope you all had a wonderful start to the new year! Things have been kind of busy here lately, so let's get to it!
As of January 8th, we now have 2 students in the family. I have decided to go to college (for the first time in my life) to pursue a degree in pharmacology. I decided to start off slow, so I only signed up for 3 classes. College Composition 1, College Prep Algebra (I have forgotten a lot!) and Word Processing for College Writing (a computer class). I'm really enjoying it! I'm getting an A in my Composition class & my Algebra class. The computer class was only 5 weeks & I finished it with an A also. I have classes twice a week during the day while Collin's in school.
Speaking of the munchkin...we went to St. Jude on Jan. 17, which was also the 7 year anniversary of his original diagnosis, and had nothing but clear tests! He's doing great 18 months off treatment! He also made A/B honor for the 2nd semester of school. I couldn't be more proud of him!
My mother has been doing pretty well, all things considered. I don't know if I mentioned it before, but a few months ago she had some surgery on two of her toes that were curling under. Unfortunately, she developed a bad sore on the sole of one foot that required surgery & one of the toes had to be removed. The surgery went very well. She now has to wear a 'contact cast' on the leg that had the sore, so that severely limits her mobility. Please keep her in your thoughts & prayers for quick healing...this is going to be a long process unfortunately. She doesn't have diabetes, but the doctor equated the state of her feet to someone who does.
As always, Jay is keeping busy with work. The holiday season was crazy, but things are finally getting back into a routine for him. He's also been getting out on his bike on the weekends with friends from previous cycling teams. It keeps him happy.
Well, that should catch you up! I hope all of you are staying safe, healthy & warm! Take care!
Love,
Shanon
Monday, November 5, 2007 4:51 PM CST
Good evening to all & Happy Fall! I'm sorry it's been so long between updates. No excuses really, just time slipping away smoothly (most of the time).
Wow! I didn't realize that it's been 3 months since the last update. That's a lot to catch up on, so, here it goes!
August was a hot, but, good month! We spent a weekend up near Gainesville with Brenda & John. We had a great time & got spoiled rotten! Thanks, guys! Hopefully we can do it again soon. We miss you!
August also held our 13th wedding anniversary! The week after our anniversary, Collin went to an overnight with the wonderful people at BASE Camp while Jay & I celebrated. We went to Blush Day Spa and had a couple massage then went out to dinner. Unfortunately, when we came out of the restaurant, we found that someone had backed into the rear quarter panel of Jay's 5 day old truck! Luckily, they were still there and we got everything sorted out. Even worse......a week later, I was hit & my car totaled! Luckily, no one was injured & after several weeks....all was resolved.
Collin started 5th grade on the 20th and has been doing well. We just got his report card last week for the first quarter. He made the A/B honor roll! 3 As & 2 Bs. A few bumps along the way, but, he's doing very well over all.
September was another good month, but, gotta love the heat!! On the 28th, the Leukemia/Lymphoma Society held a fundraiser golf tournament & Collin was the honoree. It was held at ChampionsGate Golf Course near Kissimmee. Because it is such a long drive, Collin & I were comped a suite at the hotel the night before! It was awesome! The management set up a table with snacks, drinks & hats for both of us as well as golf balls, golf glove & shirt for Collin! We swam in the lazy river and relaxed by the pool the night before the tournament. Collin & I had a great time the next day.....meeting golfers & sharing lunch with them. Thanks Kat, Mary & Carolyn for including us!
We spent the following weekend at Camp Boggy Creek for a family retreat. One of our favorite places to go! We had a great time and connected with other families of children with cancer.
October was pretty busy, too. One of the organizations that helps kids in our area, Kids Beating Cancer, hosted a gala to raise funds. An Orlando photographer, Christopher Yates - who specializes in black & white portraits, asked KBC to pick 3 families and he would do a shoot for free as well as give each of the families a framed/matted 16 x 20 portrait of his choosing at the event. So, Collin & I went for the shoot (unfortunately Jay couldn't get the day off) and we had a great time.
After that, it was off to clinic for Collin's 15 month off treatment check up. Everything was normal! We hadn't been to the Orlando clinic since the spring, so, we got to catch up with everyone at the office. Our nurse practitioner, Angela, is very pregnant and due this month with her first child. On of our nurses is also pregnant! So, I had to give our other nurse a bit of a tease about things happening in threes! Anyway, Collin's next check up will be at the end of January. For that one, we'll head to St. Jude in Memphis.
The following week, I filled in at the church office for a few days so our secretary could take some much needed time off. I enjoyed it. I'll be filling in again for her the week after Thanksgiving.....she's having knee surgery the day before Thanksgiving and is taking the following week for recovery. Hopefully, she'll be able to return on December 3rd. I may also fill in for another week in December, but, I think we're taking it one week at a time for now.
The last weekend of October was the Hats & Martinis for Hope Gala that benefited Kids Beating Cancer. The theme of the evening was 'Casablanca'. It was black tie preferred and you had to wear a hat. My guys were handsome! They both wore black tuxedos, Collin asked for tails. He had a cane & a cowboy hat! He carried the whole thing off as if he were born to it! Upon our arrival, we noticed that the portraits done by Christopher Yates were displayed.....all 3 were beautiful! When Jay saw the one of Collin & me, he got tears in his eyes! It was a great night!
And, last but definitely not least, this past weekend was absolutely beautiful! The weather has been in the 70s all weekend! We had a picnic Saturday afternoon, then went out to a putt putt course and finished the evening off with ice cream. Sunday we went to a circus who offered free admission to families that are members of Give Kids the World Kid's Club. It was a lot of fun!
OOPS! One more awesome thing that's happened! Last week, I went to Orlando to view the photos that Christoper Yates took of Collin & I. On the drive down, I was listening to a Christian radio station, Z 88.3. The DJs were talking about one of their van stops for breast cancer awareness & had a singer in the studio, Matthew West. (For those who don't know, Matthew West came out with a song in '03 called "More". It is an awesome song & one that Collin and I consider 'ours'.) Anyway, I'm listening & they say where the last van stop is for the month & that Matthew West will be there!!! OMG!! It's 15 minutes from where I'll be! So, of course, I had to go! I got to meet the DJs and hung out for a little while until Matthew West showed up! He was so sweet! We talked for about 5 minutes or so. I told him about Collin & how much his song means to us. He wrote a note for Collin & signed my copy of his CD 'Happy'!
When I picked Collin up that afternoon, I handed him the note & showed him the CD. You should have seen his face! He couldn't believe that I met Matthew West & that he wrote a note for Collin! It was a highlight for me! Collin went to bed that night listening to the Z and the last 6 nights listening to Matthew's CD!
Well, I think that does it for now! Whew! My fingers are tired! The picture at the top is a picture of the portrait done by Christopher Yates. I have also added a slideshow from the Hats & Martini event. Finally, if you click on 'view photos', you will find a school pic & Halloween pic.
Have a great evening, everyone! God bless!
Hugs & Blessings~
Shanon
Sunday, July 29, 2007 1:09 PM EST
Good morning to all! Well, it's been quite a busy month for the Burke family, but, we are all home....finally!
I'll tell you all about my trip to China another time. The trip was absolutely amazing & I had a great time!
As for the 'little man' of the house, he spent two weeks in Cleveland, starting July 1st with a solo plane ride! (On his 11th birthday!) He said the flight was great & he had no problems. He spent the time with Jay's parents. He also spent time with his aunts, uncles & little cousins. He had a lot of fun!
Jay & I flew up the weekend after my return from China. I finally got to meet my niece, Madilyn (she'll be 1 in August) and my nephew, Xavier (who turned 1 this past March), as well as seeing my other nephews, Issac (3 & Xavier's brother) and Nick (4, my brother's son). Spending time with all of those little ones, along with my sis-in-law Susan, preggo with #3, started me thinking a bit, but, I realize I am very happy with my little family as it is. :)
We had a few picnics in the Metroparks while we were there. The Metroparks are one of the things that I really miss about Ohio. I used to spend a lot of time in them when I lived there. Luckily, we had really gorgeous weather & were able to enjoy the time with family & friends.
We also got to go to a Cleveland Indians game (Collin's first ball game) while we were there. Unfortunately, they lost, but, we had a great time with our dear family friend, Tom, who provided the opportunity. Thanks, Tom!
We returned to Florida last Sunday. On Monday, Collin & I flew to Memphis, TN (St. Jude) for his ONE YEAR OFF TREATMENT check up! Tuesday morning started the appointments. First, it was off to assessment/triage for vitals & blood work. Then, an appointment with occupational therapy to check his finger/hand strength & sensitivity. His fingers are stronger than they were a year ago, but, they tire quickly, so, he needs to continue doing some exercises to strengthen them.
After that, it was off to his oncologist for his check up & lab results. His blood work came back great! Everything was right in line. (His white count was a 'touch' high, but, he was getting over a cold, so, not a big concern.) His doctor & nurse practitioner were very happy with how he is doing. We did learn that his oncologist, Dr. Nobuko Hijiya, is leaving to go to Chicago, Northwestern. We will miss her very much. The good news is that we now only have to go to Orlando for labs every 3 months & alternatively, St. Jude, every 6 months. I am so thankful that Collin has reached this milestone! God has been very good to us!
After lunch & hanging out at the Grizzlies House, we headed back to meet with the nutritionist. She made some good suggestions for changes in diet & was happy to see Collin's weight leveling out.
Next was off to get a CT scan for bone density. Last year, they performed one at the end of treatment & wanted to compare them. Bone density can be lowered due to the amount of steroids taken during the course of treatment. Last year, Collin's was pretty low or 'at risk' for breaks. The results this year still show him 'at risk', but, better than last year. So, he's headed in the right direction.
The last appointment of the day was with the endocrinologist, who evaluates bone health & other growth issues. Unfortunately, he wanted another blood test & Collin was pretty nervous about getting another 'poke', but, he handled it great! (Without any numbing cream!) I was very proud of him. We are still waiting for the results of the test checking his Vitamin D levels, but, things went well.
We returned to Orlando on Wednesday. We spent that night & the next at Aunt Pam & Uncle Jack's house visiting with them, their puppies & some family that came by on Thursday for a visit.
We are finally 'Home Sweet Home' and starting to think about school, which starts on August 20. I can't believe our boy is going into 5th grade! And, he's only 10 inches shorter than me! (Of course, that's not saying much.....I'm only 5'3" tall!)
Well, I'll be in touch. I hope you are all enjoying your summer & your families! May God continue to bless all of us!
Love & Hugs~
Shanon, Jay & CJ
Saturday, June 23, 2007 12:04 AM CDT
Good morning, everyone! Well, tomorrow morning, early, I leave for my trip to China! I can't believe it! It seemed so far away at the beginning & now it's here! I will not be checking this email after midnight tonight until my return on July 8. If you need to get in touch with me, I will be emailing with Jay. (You can reach him on his email at cyclepsycho@embarqmail.com) Please, keep me in your thoughts & prayers.
Anyway, it's been a great summer for Collin so far & it's getting better every day! He finished 4th grade in May & will advance to 5th grade in the fall. He finished out the year with 2 As, 2 Bs & 1 C. We are very proud of him.
This past week, he had his 11 month off treatment check up at clinic. He is doing great! His white cell count was up a little, but, that was probably due to the fact that he had a herpes 'flare' on his lip which is gone now. His platelets were also up, which made me very happy to see. He's been feeling good & being a typical almost 11 year old boy. Lots of gameboy, riding his scooter occasionally & going to the city swimming pool. As well as making very good progress in cleaning his bedroom.
This next month will be very busy for both of us. As I mentioned, I will be leaving for China tomorrow. Collin will be taken care of by my mother, my hubby (when he's not at work), and possibly my aunt. Next Sunday is his 11th birthday. (I can't believe it! He's growing up so fast!) On his birthday, he will be flying solo to visit family in Ohio. He will stay there for two weeks before Jay & I fly up to join him. The three of us will stay there for a week & return on 7/22.
On July 23rd, Collin & I will fly off to Memphis for his 1 year off treatment check up. YIPPPEEE! We will return home on the 25th.
With all of this traveling, please, keep all of us in your thoughts & prayers. Also, keep my mother in your prayers.....that she stay healthy & have fun with her grandson.
One last request......my Uncle Jack is scheduled to have an internal defibrillator placed while I am gone. (It was supposed to be done last week, but, his potassium was too low, so they will try again next week.) Please keep him in your prayers for a smooth surgery & quick recovery. Also, keep my Aunt Pam, his wife, in your prayers, for strength & peace while they are performing the procedure.
Thanks to all of you who have supported me during Collin's journey & now my own. I love you all so much. I'll never have the right words to say just what you've all meant to me, my family & my sanity. You are the best!
I'll be in touch when I return from China. Take care of each other & have a great summer!
Hugs & blessings to all~
Shanon
Saturday, May 26, 2007 10:40 PM CDT
Good evening, everyone! Well, we've made it through another school year, thank God! I don't have his final grades, but, I know he'll be in 5th grade next school year.
This was a pretty good week overall. Collin had clinic on Monday......counts were good & all is well! Again, Thank, God!
Wednesday evening we attended the Bon Voyage party for the cycling team that is going to Tahoe next Friday. It was a great time for everyone. Unfortunately, Collin ate a little too much of everything & paid for it the next morning. So, he missed the last day of school, but, after a few hours he was feeling much better.
Yesterday, Collin & I both got our hair cut.....pretty drastically in both cases! Fortunately, Collin opted to skip the mohawk & stick with a flat top. Looks pretty darn handsome, if you ask me. You can check out the pics in the slideshow that I've added.
Today, I am childless! And for the next 5 days! Collin headed off to Camp Boggy Creek today! It's one of his favorite places to be!
And, finally, I found out this week that I have met my fundraising for China! YIPPEEE! And, a big thank you to all of you who helped me out!
So, have a great week & I'll be in touch next month after clinic & before I head to China!
HAPPY MEMORIAL DAY!
Hugs & Blessings~
Shanon
Wednesday, April 25, 2007 7:59 PM CDT
Good evening, everyone! It's been a beautiful spring here lately, but, the weatherman mentioned the "H" word today....HUMIDITY! UGH! So, I guess summer is starting to creep it's way in.
Once again, things have been busy! We had a great spring break week, following Easter. Then, it was back to school for the boy wonder! Bummer for him, Yippee for me! LOL!
This past Monday was a busy day, but, wonderful in so many ways. Monday was Collin's 9 month off treatment clinic check up. It was a nail biter for me, because, when Collin relapsed he was 9 months off his first round of treatment. Well, it is with great joy that I share with you......his bloodwork was perfect! Everything within the normal ranges....not one single 'hinky' thing in there! Thank you, God!
After clinic, I allowed Collin to spend the day playing 'hooky' from school for a great cause....The Leukemia/Lymphoma Society's Annual Golf Marathon! It was held at a beutiful, private golf course in Sorrento, Red Tail. There were only 12 golfers, but, those 12 raised almost $40,000! Is that awesome or what? Collin & I spent the afternoon tooling around in golf carts with Mary & Kat from the Society. We took a bunch of pictures of Collin with the golfers. Collin even played a few holes! We didn't keep score, but, he did pretty good out there with his very own golf clubs.....lovingly presented to him last year by BASECamp.
At the end of the afternoon, we met with the golfers at the clubhouse for drinks, appetizers & massages! OH, how I wish I hadn't had to drive after that! I could have just curled up in a ball & headed off to La-La-Land.
Jay has been doing well & staying very busy at work. My mother is also doing well since her toe surgery.
I have been busy learning about China & our plans for the time our mission team will be there. I am about half way to my fundraising goal of $1200, but, I still have a bit of time, thankfully! I got my passport (never had one before) last week.....it's getting very exciting!
A lot of little stuff going on & Collin is counting down the days until the end of the school year & his mohawk!
Until next month.....take care & bless you all~
Shanon
Monday, April 2, 2007 10:43 PM CDT
My dearest family & friends......WOW! It's been an awesome month, to say the least! I don't know what was more exciting....our trip to California, our 8 month check up in Memphis, or attending the kick off for the Leukemia/Lymphoma Society's Man & Woman of the Year campaign, for which Collin has been chosen as the Boy of the Year for the Central Florida Chapter! And, other than some bumps in the road at school, things have been very good, so, I guess I'll take it from the top!
On the afternoon of 3/15, we arrived in San Diego. (After about 6 hours on a plane! WHEW!) It was sunny, comfortable & breezy.....beautiful! Our hotel was very nice w/a balcony over-looking one of the two pools. We spent that afternoon with my Aunt Kathy, and later my cousin Bill joined us for dinner. It was a very nice visit.
The next day....it was off to LEGOLand! Man, LEGOs everywhere! I often think a LEGO factory has exploded in Collin's room, but, the Model Shop was loaded! (Unfortunately, Collin's bedroom is not nearly as organized! LOL!) We met with Crystal, who showed us around a bit and took us to the Model Shop to meet Master Builder, Eric. Most people just get to stare at Eric through the large picture window, but, we got to go inside & visit. He was working on one of the Las Vegas hotels that will be added to the newest section of reproduced cities, in LEGOs, of course. We almost had to drag Collin out of there, but, not before he conned Eric out of a few unique LEGOs!
I can't put into words what the park was like, but, I'll try. There is a whole area of cities (NY, San Fran, New Orleans, DC, and more) reproduced in LEGOs. You just wander around in awe of what it must have taken to accomplish these things. To give you an idea of scale, the Washington monument is about 10 feet tall! There is another path that goes up behind the Model Shop with busts of famous people (Churchill, Elvis, Einstein) leading up to a whole area of reproduced artworks. Among them was 'The Thinker', 'American Gothic' and 'Mona Lisa'. From a distance, you almost couldn't tell they were made of LEGOs. There were roller coasters, boat rides, a playground and shows. But, everywhere you turned, there was something made of LEGOs.....including Harry Potter & Hagrid! (I have a picture of me next to Hagrid and he's huge!) And, Collin's favorite part.....the Volvo Driving School! He got his driver's license! LOL!
We had a great day, grabbed dinner & chilled out in the jacuzzi at the end of the day.
Saturday, we went to the USS Midway, a Navy aircraft carrier open to the public. It was like visiting the 'old neighborhood' for Jay, who was stationed on the USS John F. Kennedy during Desert Storm. It was especially heart-warming to see Jay explain all of the little bits of info to Collin as we explored. And, Collin just soaked it up! He loved looking at the jets on the flight deck. We even got to go into the 'tower'....the tall part of the ship where the captain sits when he wants to keep an eye on things.
Here's the part that I thought was an amazing coincidence. Right next to our hotel was a little park. Looked very nice....kind of a pathway with columns leading to a sculpture with waterfall & finally to a gazebo-type area with mosaic benches. Well, upon closer inspection, we found the name.....The Richard & Annette Bloch Cancer Survivors Park! It was meant to be! All I can say is check out the website, http://www.blochcancer.org/virtual_park/welcome_vp.html, to learn about the parks, the sculpture & the foundation! It's amazing! After checking out the website, I've found out that there are 22 such parks around the country! One to be completed in Memphis in August! It was truly inspiring to see. I felt blessed to walk that path with a survivor, my son, and to take his picture with the sculpture.
The rest of the day was hanging out in the jacuzzi (sensing a pattern here??), dinner & putt putt at a place called 'Boomers'. (For those in Northern Ohio, kind of like 'Swings & Things'.
Sunday, we were off to the San Diego Zoo! Talk about huge! The Cleveland Zoo is big, but, I think San Diego might have them beat! What is there to say about animals! Gotta love them!
My cousin, Bill, joined us at the zoo. Afterward, we headed up into the hills to visit Aunt Kathy & her hubby, Jim. But, on the way, we needed lunch! Where did we go??? Weinerschnitzel! I kid you not & I will admit it! It was one of the best chili/cheese dogs I've ever had! And, Jay...he had a pastrami dog! It's an all beef hot dog, in a pretzel bun, with pastrami, swiss cheese, mustard & a big slice of dill pickle! He's still talking about it! His only complaint.....should have had kraut!
We spent some time at Aunt Kathy's house. It was a beautiful afternoon. We met her mule, Abigail, and a friend's horse (sorry, don't remember his name).....I never realized that a mule wasn't a donkey! It was bigger than the horse! Collin helped feed the livestock & then it was back down the hill.
We had an awesome time & won't soon forget it! We arrived back in Florida Monday night.
Tuesday, dirt early, Collin & I boarded another plane.....this one to Memphis for his 8 month check up. Everything we went very well. His doctor is very pleased with him & his counts were great! Thankfully, we had the rest of the afternoon & evening to relax & catch some Zzzzs. (At this point, I don't think I knew what time zone I was in!)
And, about Collin being Boy of the Year for the Society? You can check out the details at the Society's website www.lls.org/cflmwoydonate. There are links to each of the candidates' websites & one for Collin as well. It's an honor for both of us to be a part of the LLS & it's programs.
Ooops! One more thing.....some of you may know that my mom recently had surgery on her toes....(one doctor wanted to remove them!). Thankfully, the second doc she saw had other ideas. She had the surgery (in the doc's office) the day Collin & I went to Memphis. She is healed now & thank the Lord, all went well.
Whew! Thanks for getting to the end & for keeping up with our crazy life! I'll be in touch again soon! Until then, we love you all & thank you for your prayers!
Hugs & Blessings~
Shanon & the boys
Thursday, February 22, 2007 12:19 PM CST
Good afternoon, everyone! Wow! I can't believe it's been a month since my last update......here's the scoop!
First, I need to tell you about the picture on our page. That is the face of a child who just found out (via a letter) that he will be getting a second wish.....we're going to LEGOLand California! I don't need to tell you just how exciting that is for our LEGOmaniac! We gave him the letter this past Monday & he's been talking about it ever since! We will be heading to California on March 15 and returning on March 19. We are so blessed that the Marty Lyons Foundation was able to grant this wish for Collin!
Other exciting things going on....hmmmm, where do I start?!? Ok, Collin & I have been getting more involved with our local Leukemia/Lymphoma Society. He was recently asked to be the Honored Patient for the Pasta for Pennies program and the TNT Tahoe Century Cycling team. He's also been chosen to be the 'Boy of the Year' and the Honoree for the Golf Marathon in April. Collin also made the A/B honor roll on his last report card & got over his anxiety enough to complete a full page written narrative for one of his most recent tests. And, on Monday, we had clinic for his 7 month off treatment check up.....other than an ear infection, he's feeling good & his blood counts looked great! YIPPEE!
Some excting news for me.....my church, Faith Lutheran, is organizing a short term, 2 week, mission trip to China. And, believe it or not, I have signed up! (I'm still kind of shocked myself!) You can read about it on my blog at:
http://faithinchina-shanon.blogspot.com/
I guess that gives you the jist of the last month overall. Lots of stuff happenning & lots of stuff to do! I hope all of you are enjoying your winter and staying warm!
I'll update again.....when we get back from LEGOland!
Love, hugs & blessings to all~
Shanon
Friday, January 26, 2007 10:56 AM CST
The following was written on January 16 & 17....I just forgot to post to the site. Love, Shanon
January 17......a day like any other, right? You'd think so. So many dates have meaning for us, for a variety of reasons. Birthdays, anniversaries, achievements......those are all special dates. Dates that should be remembered fondly & with much joy. Unfortunately, we have other dates that become memorable for other reasons, reasons we would not chose.....deaths, divorces, accidents. Not so special dates there, huh? I never thought January 17 would become one of those dates for me....then again, we can't chose the day that our lives change, but, we don't forget it. We can try to forget it, but, it always manages to come around & remind us somehow. I guess it all boils down to how we choose to look at those dates.
January 17, 2001.....a day I will never forget. The day my precious, precocious 4 1/2 year old son (and don't you dare just say '4'!) was diagnosed with leukemia. Sometimes, it's hard to believe that it's been that long. Other times, it feels like it was just yesterday when my mother, my son & I sat in his hospital room as the doctor spoke words no parent should ever hear. He'd never been in the hospital before. He was scared & had all of these lines running around his body. The only exposure he'd ever had to the hospital environment was when his grandparent's were in for one reason or another. Nothing unexpected, mostly, for older people. Now all of these people were poking at him.
It was such a bittersweet day. A day full of tears, confusion, frustration & fear. A day of pride, for how brave my little boy was & how strong I managed to be. A day of comfort as family, (particularly my mom), friends & co-workers stood by our sides. A day of struggling to answer the unanswerable question....why? Why my child? Why my family? Why me? A day of learning things no parent should have to learn.....caring for a central line, blood counts & learning just how dangerous germs can be to anyone dealing with cancer & chemotherapy. A day of realizing that our lives would never, ever be the same again. No more being blissfully unaware of what a fever can mean. No more blinders about the number of germs in the ball pit at McDonalds. No more keeping our head in the sand about what effects a drug can have on a person.
But, right after that day came many others. Days of joy, more days of tears, days of sorrow & days of celebration. Our lives have not been the same since January 17, 2001. I know we are all changed for what came into our lives that day. I've learned things that I may not have learned otherwise.....I've learned that life must go on & that it needs to be enjoyed to the fullest it can be. I've learned that when our bodies ache or are tired, they really are trying to tell us something....something that should be listened to closely some times. I've learned that my marriage is stronger than most, thankfully. I've learned that I am stronger than I ever thought I could be. I've found my way back to God.....a forgiving God, that I thought had given up on me. (And, truthfully, I wouldn't have blamed Him.) And, I've learned, through the eyes of my child, that life needs to be lived.
So, although I wouldn't have chosen January 17, 2001 as the day cancer changed our lives, I won't blame it on the day either. It was no one's fault & no one's choice. It just is. Thankfully, I don't dread it quite as much as I used to, though, I guess, maybe, I still do a little. But, I try to be thankful that today is another day that my son is with me, that my family is together & that our lives, 6 years later, are still being lived.
I'll have an update on Collin soon, but, I started to type it & this is what came out......thanks for reading.
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Happy New Year, everyone! I hope you had a great holiday season & are having a good day today.
We've been doing pretty well lately. Christmas was very good for all of us, especially Collin. He got just about everything he asked for and he's been feeling pretty good, too.
New Year's Eve day was pretty special. We spent the day at New Smyrna Beach, on the east coast near Daytona. It was a beautiful day and the water was a cool 70 degrees. A bit chilly for Mom, but, it didn't stop our boy! He was playing in the water & having a blast! We flew kites & walked the beach looking for shells. And, we didn't realize this until a news story last night, but, we found several small man-o-wars washed up on the beach, too! Luckily, no one was stung while playing in the water. It was a great family day.
Collin decided that he wanted to stay up until midnight this year, so, he did. We played some games & lit some fireworks, lots of sparklers & Daddy had stopped at the firework stand nearby. By 11:30, he was barely hanging in there with us. But, he made it to midnight & even had a sip of champagne with the grown ups after the ball dropped. (You should have seen the face he made! Yuck!) By 12:30, he was out cold!
We've managed to explore a few other beaches as our Sunday family outings. We're going to try to make a habit of checking out new beaches each weekend, weather permitting. Unfortunately, we're looking at 60 degree weather this weekend, so, I think we'll be skipping the beach this weekend. But, there will be others.
Collin has been seeing a counselor for his defiance/anger issues & he tells me that Mr. Steve is helping him a lot. He also was started on a low dose (10 mg/once a day) of Ritlan & he seems to be doing well with that as well. He tells me he is better able to focus in class. (We'll see what his teachers have to say about that.) :)
This passed Monday was Collin's 6 month off treatment check up. Counts looked good & they were happy with how he's doing. Unfortunately, he's sniffling again, so, I think we're gearing up for another sinusitis flare up if I can't nip it in the bud with Afrin. All in all, Collin has been feeling very good, maintaining his weight & growing a little each month. He's grown 1 cm since last month. I can't believe he's creeping up on me! He's 4 foot 4 and I'm 5 foot 3......pretty soon, we'll be standing shoulder to shoulder!
On a last positive note, after much head-butting & hard work, our dear boy has managed to make the honor roll for the last quarter of school! We are very proud of him! The ceremony is at school tomorrow. I love seeing his pride in himself when he walks up to accept his award from the principal.
Well, if anything pops up before his next check up, I'll drop you a note. Otherwise, I'll talk to you again next month!
God bless & have a great week!
..· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ Shanon -:¦:-
-:¦:- ((¸¸.·´*
Wednesday, December 20, 2006 11:05 AM CST
Happy Holidays, Everyone! I am way behind in updating & things have been busy so, I'll try to catch you up. (Bear with me if I get a little long-winded!)
Collin is doing very well! We went to Memphis last month for his 4 month check up. Counts were good & the doctor was happy. He was also able to get rid of his leg braces. He still needs to do some exercises to work on stretching those calf muscles and he was also given some hand exercises to do to strengthen those, as well. All of these muscles have been weakened by some of the chemo.....not severely, but, effected all the same.
While we were in Memphis, Collin also had a neuropsychological evaluation. (He's been having some attention issues in school.) The testing confirmed that he is intelligent, but, does have a problem focusing. So, today he has an appointment with a local psychiatrist & I am going to ask that he be put on Ritalin. (St. Jude has done studies that this may be effective.) He tried a different med a few months ago, Focalin XR, and I stopped it within a week. He had some nasty side effects. So, hopefully, we'll get it sorted out soon.
He also had a check up in Orlando last week. Counts were good then, too. White count was up a little, but, within 24 hours, he started with a runny nose, so, I think he was just gearing up to fight the cold/infection. He has an appointment with his pediatrician this afternoon to see if it's just a cold or possibly a sinus or ear infection.
We've been busy with holiday parties, Christmas shopping (Thanks to Aunt Pam & Uncle Jack for taking CJ for the weekend while Jay & I shopped) and life in general.
On a very exciting note, Collin & I became members of Faith Lutheran Church on December 3. This church & school have been a part of our lives since Collin was 4 years old. They have been supportive through all of our trials. I feel so blessed to be a member of the Lutheran faith & our church. The pastors are wonderful (Thank you, Pastor Bill, for always being there when I need you) & the members are great people. I hope to that Collin & I become more involved in the activities offered at Faith.
I feel so blessed these days. Life is by no means easy for any of us, but, I have my son, my husband, my mother and so many others that I can't begin to name. They are all relatively healthy & happy. I have my health, which is improving. (My thyroid is close to normal & my anemia is much better.) I have my home, my church, my faith. I have so many blessings that I can't even begin to list them all, but, I am truly thankful for those blessings & the life that I have been given. And, of course, I have all of you.....who are always here to listen, pray, rejoice, cry with whenever I need to. Thank you so much for being a part of our lives!
Merry Christmas, Happy New Year & May God Bless you all~
Shanon
Monday, October 23, 2006 1:24 PM CDT
Hello to all of our family & friends! I know I have been severely lacking in keeping you up-to-date on our boy, so I'm going to try to be as concise as it is possible for me to be!
Well, Collin is through his first 9 weeks of school! I'll have a conference with his teachers tomorrow evening & get his report card. I know his grades are not what they should be....he has not been putting forth his best effort, but, I don't expect any surprises. I imagine the next report card will show improvement since his teachers & I are working more closely.
Last month when we went to clinic, Collin was very brave! He needed to get a needle poke (vein draw) for his counts & other labs last month. We put the numbing cream on beforehand & he took a benadryl. Benadryl makes him sleepy, so the hope was that it would keep him calm. I also bribed him! I promised a new video game if he could be very still & let the nurse draw his blood. Well, we still had tears, but, no fighting & it was in before he knew it! Counts were good, but, his IgG was still a little low, so we're going to need another draw when we go this Thursday. I have faith that he will get through this one as well as he did the last.
There have been some unsettling news/events in the Burke branch of our family lately. My father-in-law, Dennis, was diagnosed with prostate cancer in August. It's in the early stages & the prognosis is good. He is all set to have a radical prostectomy in December. Well, the surgeon sent him for pre-surgical testing....to make sure he was otherwise fit to endure the surgery. He went for an EKG two weeks ago, then a stress test. After finding some 'anomalies' it was decided to do a cardiac catheterization last Wednesday to look at some potential blockages. He was admitted to the hospital that evening & underwent bypass surgery on Thursday. He had 3 blockages. There have been a few problems during his recovery, but, I am happy to report that he is doing well & the doctor is considering sending him home tomorrow. Thank God!
In other areas of our lives....my mother has cataracts. (UGH!) Thankfully, she has already had one removed & the other is scheduled for early tomorrow morning. The amazing thing is that the vision in the first eye has corrected to 20/20! (It was 20/80!) So, we have great hopes for improved vision in the second eye as well. She will always have problems but hopefully removing the cataracts will help in general. (She has reduced peripheral vision in one eye from a stroke several years ago and 'spots' in the other as a result of the bleed in her brain earlier this year.)
Jay is doing well, but, as you can imagine, this past weekend was very emotional for him. His dad is a very fit man & very athletic, so this really threw the whole family for a loop. Luckily, and with much help from Aunt Pam & Uncle Jack, Jay was able to go to Ohio for a few days to see his dad & support his mom & siblings. He is back at work today & looking forward to his 100 mile bike ride this weekend! (I'll tell you more about that another time!)
As for me.....well, I tried to correct my anemia on my own by adding an iron supplement to my morning meds. Boy, did I do it! My iron levels jumped from 18 to 280! But, I'm still tired, so I'm going to see a hematologist on Friday & see if he can help me sort it out. I've also been battling a sinus infection for almost a month now. I think the infection is finally cleared, but, I'm still stuffy, so maybe it's allergies. We'll see.
On a better note, I have been participating in a Bible study group for the last few weeks, based on the '40 days of Community' program by Rick Warren. (Author of 'A Purpose Filled Life'.) It's been very interesting & I truly enjoy my group members. I have also been going to church, when I've felt well, and participating in a group in learning about the Lutheran faith. Collin & I are going to be baptized soon! (I was going to do it myself, but, Collin has expressed his own desire to be baptized which just fills my heart with joy!) I just have to get together with the pastor to get it arranged.
So, there's the scoop! I hope you all have been doing well, staying safe & healthy, and continuing to love one another! I promise to update next week about Collin's report card & clinic visit!
Love & Hugs to all~
Shanon
Friday, August 18, 2006 6:26 PM CDT
Happy Weekend! Wow! I can't believe we have the first week of school under our belts already, but, I'm getting ahead of myself, so here's what's been happening.....
Collin started school on August 10th. His teacher, Ms. Rogers, is a very enthusiastic young lady & seems to really enjoy the kids. But, I've heard, that she can be very exacting, so, we'll see how she & Collin progress. A few bumps already, but, we're working on it.
Also, on the 10th, the newest member of our family was born! We have a niece! Madeline Grace Timko was born in Ohio to Jay's youngest sister, Heather, and her husband, Andy. She is their first child! Congrats & welcome to the new baby! (Nice to have a girl in the clan! We already have 3 nephews!)
On the 12th, we went to Orlando to spend the day with Aunt Pam, her brother, John, (aka 'Unky Do'), his wife, Brenda, their son, Alan & our whole crew. We went to the Fun Spot Action Park as a celebration for Collin's end of treatment. We had a great (but, hot!) time racing in go-karts, riding bumper cars & just hanging out together.
Sunday, the 13th, was our wedding anniversary. I can't believe it's been 12 years! We had a nice dinner, Jay, Collin & I, and just relaxed at home.
Monday.....Collin got his line taken out! When Collin started treatment for his relapse, he had a double-lumen Hickman line surgically implanted into his chest. This was done so that he would not have to endure numerous IVs for chemo & pokes for blood draws during the 2 years+ course of his treatment. Well, Monday morning we were off to Orlando so that he could have it removed under sedation. He did great! He does have a small incision in his upper chest, but, other than that, it went very well. We went out to a late lunch afterward, but, even though he ate, Collin spent most of the rest of the afternoon vomiting. I'm not sure why, maybe from the anesthesia, but, he did get a bit of food to stay down before bed. I let him stay home from school on Tuesday to rest up after the excitement and stress of the previous day. He was able to eat & didn't have any further episodes of vomiting.
My mother, on the other hand, has had some recurring episodes of vomiting & constipation herself. It got bad enough on Tuesday night, that she wanted to go to the hospital on Wednesday. So, after a call to her doc, we headed to the ER. She was taken back pretty quickly. After an Xray showed that she was very backed up, she was given a few enemas & a suppository. That got things moving. She was kept overnight, and, since she was able to keep her lunch down, she came home yesterday. She's had one or two more vomiting episodes, but, hopefully she'll be able to see another doctor soon to help figure out what's going on & get her feeling better.
As for myself, not quite sure how I'm feeling, what I'm doing, or which way to go next.
Physically, I'm still quite tired, though not as bad as previously. I did see my GI doc yesterday. He reiterated that both of my scopes were ok, no signs of active bleeding. I did have a small pre-cancerous colon polyp removed, so, he wants to repeat that in 2 years. Otherwise, his recommendation for the cause of my anemia is possibly fibroids. So, I had bloodwork drawn today & I'll see my primary doc next Wednesday. We'll review everything and go from there.
Emotionally, life is a roller-coaster anyway, so, who am I to complain, right? Honestly, I feel very good about Collin's future, but, Lord, PLEASE, give me strength when I'm having doubts. I know that those moments will come. Leukemia will never again be very far from my mind, unfortunately, but, hopefully, it will start to dim a bit as life goes on. There are always the other stresses in life, but, I think, on the whole, I'm doing OK.
So, enough of my rambling for now. Sorry, I got a little long-winded today!
I hope you all have a great weekend! Hold your friends & family always close in your heart!
Love,
Shanon
Wednesday, August 2, 2006 11:01 PM CDT
Hi, everyone! Sorry that I've been out of touch, but, between our time in Memphis & my own procedure yesterday, it's been kind of crazy. So, here it goes......
We had an amazing time with Daddy in Memphis. Monday & Tuesday were kind of crazy with tests & procedures, but, all the tests came back negative! Bone marrow & spinal were ALL CLEAR! And, best of all, the MRD test (more sensitive than a normal blood smear slide) came back NEGATIVE! That means that Collin can have his central line removed! I can't even begin to tell you how happy we all are that this road has come to an end & we can get back to some kind of normal life. (Whatever that is!) The only downside is that his bone density is on the low side, so, no contact sports, but, we can live with that. He also has to take a calcium supplement twice a day.
On Wednesday, we celebrated all day long! We started out with the 'No Mo' Chemo' song, sung by his doctor & nurses who then proceeded to spray him with silly string & cover him in confetti! After that, it was off to Graceland! (All Hail the King! LOL!) Collin was really into the whole tour & loved the cars! Later in the evening, we went to the Putt-Putt Family Fun park! We played putt-putt, rode bumper boats, drove go karts (Collin & Jay both first-timers), and played video games! We were all pleasantly tired at the end of the night.
After making sure we were packed up, we headed off to the Memphis Zoo on Thursday. We saw so many wonderful animals. (Of course, all of the big cats-my favs-were sleeping!) Collin's favorite was getting to see the meerkats. (For anyone who doesn't have Animal Planet or who hasn't heard of it, they have a show called Meerkat Manor. It is a compilation of footage/episodes taken from a 10-year study performed in Africa. Collin & I watch it every Friday!)
I want to thank all of you for continuing to give me & my 'boys' your support, love & prayers. I can't tell you how much you mean to me. You are always here, ready to listen, lift up & just be there for me whenever I needed to lean. Just because Collin is off treatment, doesn't mean I won't continue to need you. I hope to have nothing but good news in future updates. I just want you to know that though I may not always acknowledge the notes & gifts sent our way, I do love & appreciate all of you very much!
Hugs & blessings to all of you~
Shanon
PS - My procedure yesterday was an upper GI scope. It was fine. I have some gastritis, but, it can be handled by OTC products as needed. Love, Me
Tuesday, July 18, 2006 10:43 PM CDT
Hi, family & friends! Where do I begin to explain today? I don't know if I have the words but I sure will try.
Today was a HUGE day for Collin, for our family, for our doctors & nurses and so many others. Today, Tuesday, July 18, 2006....Collin received his LAST DOSE OF CHEMO! Seeing the words in print really brings it home for me. For the last 5 years, 6 months & 1 day (minus 9 months of time off between ending his original treatment & the diagnosis of his relapse), Collin has had so much to endure.....chemo, steroids, antibiotics, blood, platelets, IV fluids, spinal taps (aka 'back pokes'), bone marrow aspirations (aka 'hip pokes'), shots, hospital admissions and the hours upon hours that would add up our trips to Orlando & Memphis for treatments. I am in awe of him! He has tolerated all of it better than most adults would. And, he has flourished! He's gone from a bright 4 1/2 year old preschooler to a 10 year old heading into fourth grade and managing honor roll grades for the last two years! He's polite, considerate, caring, loving & generally a great kid to have around. Thank you, God, for giving me my son & keeping your hand upon us all during these years! I have no idea what the future will bring, but, it is my fervent hope that he will continue to flourish & use his experiences to become a symbol of hope for others.
It was a wonderful, exciting day at clinic today. Miss Teri Jones from our always wonderful BASE Camp was there with balloons, pizza, cake & gifts! Collin's counts were very good & he was all set to get his chemo after the doctor checked him over. I think all of us at clinic looked at Collin with awe & pride today. We had a great time celebrating! (Thanks, Aunt Pam, for taking the time to be there today!)
So, our last week of steroids began at 4 pm this afternoon! YEAH! I am soooo looking forward to no more steroids! (I may make that a separate celebration! LOL!) Very early next Monday morning, Collin, Jay & I will board a plane to Memphis for all of Collin's end of treatment testing. (Thankfully, we had enough flyer miles so that we could get Jay a ticket to go with us!) Collin will have several tests on Monday & Tuesday. Tuesday will be the biggies...spinal tap & bone marrow aspiration. We will be spending Wednesday & Thursday doing 'touristy' stuff that we haven't been able to do before. Then we'll fly home Thursday evening. I am really looking forward to this trip.
Once we have all of the test results back & the ok from St. Jude, we will meet with a surgeon in Orlando about removing Collin's central line. As long as everything is all clear, and I pray it will be, we'll get that line out! Then we can go to the beach & go swimming!
So, what more can I say......other than a huge 'Thank You' to all of you who have been there for us. I think I would have lost my mind years ago without all of you to 'talk' to. Thank you so much for always listening, caring, praying & celebrating with our family! Please continue to send prayers & good thoughts our way as Collin (and our family) come to the end of this journey!
I'll be in touch when we come back! Take care & have a great week!
Love & Hugs~
Shanon
Monday, July 3, 2006 2:05 PM CDT
Hi, everyone! I hope you are all having a wonderful holiday weekend! I have so many things to celebrate, I just don't know where to begin!
First of all, our trip to Memphis went great! Collin's counts were good & he got his last spinal tap with chemo! He still has spinal taps in his future, for diagnostic purposes, but no more chemo in the spinal fluid! YEAH!
Saturday was Collin's 10th birthday! OMG! I can't believe that it was 10 years ago that I held this tiny 5 lb 13 oz baby in my arms! Now I'm hugging a budding young man who is only a foot shorter than me and weighs 95 lbs! Anyway, enough of the misty mom moment.....he had a great day! Collin, my mom, Jay & I went to Build-a-Bear for his birthday present from Jay & I. He chose a husky puppy & picked out a Superman costume for it. It's name is Krypto & Collin is very happy with it! Then it was off to Toys-R-Us to spend some birthday money! After that it was a birthday dinner at Joe's Crab Shack with us & Aunt Pam. (Sorry, you didn't feel up to it Uncle Jack, but, we'll see you soon!)
Yesterday, we visited with the Team In Training Cyclists & had a nice visit. Unfortunately, a few people were having a rough time with the sun, heat & humidity, but they are amazing people and they will persevere.
After the visit with the team, it was time to go home & get lunch before I took Collin off to Camp Boggy Creek. This is his 3rd year & he's an old pro at it. He loves Boggy & all of the counselors! By the time he was checked in and settled into his cabin with some new friends, Mommy didn't exist anymore! I'm sure he'll have plenty to tell me about when he comes home on Saturday.
Collin's official off-treatment date will be July 25th. He will receive his last IV chemo on the 18th or 19th and take his last dose of steroids 5 days later! Wow! What a long two years & two months it has been! We will go to Memphis on the 23rd. He has a lot of end of treatment tests to be performed on the 24th & 25th. Then, if his MRD test is negative, his line will come out, too. It's exciting, scary, exhilarating & overwhelming! Please continue to keep Collin in your thoughts and prayers.
Happy 4th! Celebrate freedom & enjoy it!
Love & Blessings~
Shanon
Monday, June 26, 2006 9:52 AM CDT
Happy Monday, everyone! I hope you all had a great weekend!
Things have been busy around here lately, but, we managed to survive low counts without a fever! Yeah! Collin has been doing well & getting his chemo as planned. He & I will be heading to Memphis later today. Tomorrow marks the beginning of 30 days left of treatment for Collin. I'm very excited, but, also nervous. I just put my faith in God that this will be the last time Collin will have to go through all of this. It was hard the first time around, but, we made it through. When Collin relapsed 9 months after finishing his initial treatment, it was even harder, on him especially, but all of us as a family as well. Collin has handled all of his treatment with such grace & determination that I can't help but feel he has a special purpose in his life that has yet to be revealed. He's already taught all of us so much & has so much to give, learn & experience. I look forward to each and everyday of watching him grow into the amazing man that I know he will one day become. He's my hero, my inspiration & my heart. I can only pray that he never has to go through anything like these last 5 1/2 years ever again.
Our dog, Weiner, is doing great after his recent back surgery for a slipped disc. He is walking around & wanting to jump, play, run, and generally do everything that the vet said he can't do for another 2 weeks. Thanks so much to Aunt Pam & Uncle Jack for helping us take care of our four-legged Napoleon! We love you!
I did have my colonoscopy 2 weeks ago & it went better than I could have expected. (Man, they give some good drugs to knock you out! LOL!) The doctor found one small polyp & no signs of bleeding, so, we're still at some loss for my anemia, but, working our way to an answer soon.
My grandmother, Dorothy, fell recently and broke her pelvic bone in 2 places. She is out of the hospital & in a rehab facility. Please keep her in your thoughts & prayers for a speedy, uncomplicated recovery. (Uncle Rich, please email me or call me with the phone number that I can call Grandma at when you can. Thanks!)
Jay is doing well. Busy with UPS & biking with the TNT team on Sundays. His birthday is this Wednesday, so we'll be heading straight home from the airport to celebrate with Daddy upon our return from Memphis. (I still can't believe that 10 years ago, a day after Jay's birthday, they were starting to induce my labor so that Collin could arrive! What a birthday that was for him!)
Yep, this Saturday my little boy is going to be 10! I just can't get over how the time has flown! Even with the challenges we have faced with him, the time has gone way too fast! I look forward to many more years of watching him grow, mature & experience all that life has to offer him.
I hope you all have a wonderful week! I'll drop another note later on & let you know how things are going!
Love & hugs~
Shanon
Monday, June 19, 2006 10:29 PM CDT
Hi, everyone! I hope you all had a great weekend! I'll post a full update later in the week. Rest assured, all is well & Collin is doing fine.
I'd like to ask you all to watch something this week. Wednesday and Thursday, PBS will be showing the documentary film "A Lion in the House." (In Florida, it is on at 9 pm.) This film follows five families affected by childhood cancer. Three of the children have leukemia. There are cures, relapses, and even deaths in this movie, I believe. It will be painful and sad at times, as it should be. But I expect you will also see laughter and hope and even joy. Children with cancer are children first, and they find ways to continue living even as their bodies fail them. It feels important to me that many people see this movie, from the general need to make public the faces of childhood
cancer. But I also have an almost desperate need to have friends and family watch this; I imagine us all together in a small theater; I imagine seeing this with love and support around us (I expect Jay and I will falter
sometimes during it). But since that personal showing isn't going to happen, it makes me feel better to think that as we watch, our friends and family will be watching too.
I know that I have shared much of the last 5+ years on this website, but I suspect this movie will share more--more of
what Collin has experienced, and more of what we haven't experienced but often fear. So, if you can bear it, please watch this movie, for Collin, for me, for all the families who can't just turn the TV off and walk away.
Love & Blessings to all~
Shanon
Thursday, June 8, 2006 10:15 PM CDT
Hey, everyone! It's been awhile, I know. So, here's the scoop on Collin. (For anyone interested, I'll add a short update at the end about the goings on of the rest of the household. That way, if you don't care to read it, just skip it! LOL!)
Well, for the last few weeks Collin has been feeling well & his counts have been good. We went to the first Team In Training training ride to meet everyone two weeks ago. They are a great group of people who will be pedaling their hearts out to help the Leukemia & Lymphoma Society continue their efforts to find a cure. GO TEAM! Afterward, we went for our own little training ride. Collin managed to ride one mile round trip with an uphill on both sides! He was very persistent & did great!
He & I went to Memphis last week. (May 28) On Tuesday, 29th, he was seen by his doctor. She is very happy with how well he is doing & almost as excited as we are that treatment is close to an end. (1 month & 3 weeks, but, hey, who's counting!) After the doc, we went to the procedures room, where Collin was given meds to make him sleepy. Once asleep, I stepped out of the room & he had his spinal tap which includes drawing out spinal fluid for testing & replacing it with 2 chemo meds & hydrocortisone. Everything went perfectly! (And, came back clear! Thank you, Lord!)
Overall, the procedure takes about an hour (between the actual tap & waiting for him to wake up). Afterward, it was off to the cafeteria to feed the boy! He was hungry! After lunch, our next stop was the medicine room, where Collin received several chemo meds: VP-16, over the course of an hour & cyclophosphamide, over the course of 1/2 hour. Followed by 4 hours of IV fluids to help both meds move through his system.
All in all, it was a long day, 12 hours at the hospital, but a good one. We headed back home to Florida Wednesday morning.
Yesterday was our weekly clinic here in Orlando. Guess who got a shock.....ME! Collin's counts are lower than they've been in several months. This is not unusual for this point in treatment. His body's kind of saying, "Hey! I've had about all I can take!" Luckily, though they are low, his counts were high enough to get 50% doses of his weekly chemos. What else do low counts mean? (Low being an ANC of 500 or less. His was 320.) It also means that we are on fever-watch! Yep! If the boy has a fever of 100.4 or higher, we get a one-way ticket to a private room at Chez Florida Hospital Orlando for a minimum 3 day stay. He did pop up with a 100 temp while at clinic, so as a precaution, he was given some IV antibiotics in each of his lines. The nurse practitioner also thought the lower lobe of his right lung sounded 'iffy' so she sent us over to the hospital for a chest X-ray. (Just to rule out pneumonia. Another no-no for a cancer kid, especially one with very low counts!)
After that, it was off to the pulmonologist. He looked at the x-ray & said there was nothing suspicious. Perhaps Angela was just being overly cautious, which is fine with me! Collin also had a pulmonary function test (breathing test) to see if the Flovent inhaler that he is on is helping to improve his breathing. The results were very positive, so we will continue with the Flovent & return to the pulmonologist in 2 months.
So, that's life here in Collin's world right now. Summer has started & he's just been chilling out, building LEGOs & playing computer games. (And counting down the days to his birthday! I can't believe he's going to be 10 in 3 weeks! It doesn't seem possible!)
Please keep sending those prayers & positive thoughts his way!
Love & blessings~
Shanon
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The rest of the household:
Hello, again! So, you've gotten the scoop on Collin, now I'll give you the scoop on the rest of the family.
As most of you know, I've been having a few issues myself. At a recent yearly check up I found out that I have hypothyroidism & am anemic. So, I've started on a multi-vitamin, med for my thyroid & an anti-anxiety/anti-depressant med. We've been trying to track down a cause for the anemia. I've recently had my iron & B12 levels tested, which were both very low. I was also tested for Lupus. Thankfully, this test was negative. The doc had me do 'stool cards' which were a test for blood coming from the digestive system. 2 of the 3 came back positive for blood. So, I went to see a gastro-intenstinal specialist today. He has scheduled me for a colonoscopy to be performed next Tuesday. He is also recommending that my primary doc set me up for an ultrasound of the uterus. He says the most common cause of anemia in women my age is fibroids. My primary is on vacation this week, so I imagine I'll hear more about that sometime next week.
My doc is also giving me a prescription for ativan, an anti-anxiety med, to help me when I'm feeling more stressed than usual. I won't need it often, but, once in awhile I really start to feel more edgy than usual & it will help to relax & sleep.
Jay has been doing very well lately. Keeping busy with work & biking. He has been riding with the team that Collin is the honorary coach for. They are doing well & he is having a great time! He also recently received an award from UPS for one year of safe driving!
As for the animals, well, as I type this Weiner, our dachshund/jack russell terrier mix, is having back surgery. We knew he had arthritis, but, this past Sunday, he managed to slip a disc. The vet is very positive that this will restore his mobility, as he was unable to stand on his back legs for more than a few seconds & was in a lot of pain. Please keep our faithful friend in your thoughts and prayers for a full & fast recovery. (He's very special to us, particularly Collin & I. He came into our lives 6 months after Collin's original diagnosis.)
My mother is also doing well. She's been experiencing some shoulder pain, but, otherwise is getting around on her own & starting to putz around in the garden a bit. Thanks for keeping her in your prayers, as well.
Thanks for keeping all of us in your thoughts & prayers. I don't know what I would do without you!
Love & hugs~
Shanon & the crew
Tuesday, May 16, 2006 1:06 PM CDT
Hello, everyone! Once again, I am overdue on my weekly update. It's just been another one of those busy weeks! Since so much has been going on, this may start to resemble a small novel, so bear with me if you can. (If you can't, just know that Collin is doing very well. LOL!)
Collin had clinic last Wednesday. Everything was good. His ANC was down to 806, so the chemo is doing it's job. His ears looked good, but, there was still some fluid in the left ear. It can take some time to drain, so we'll just watch & see what happens next.
After clinic, Collin had an appointment with a pulmonologist right around the corner from our clinic in Orlando. He had a pulmonary function test which showed that he has mild asthma. Most likely seasonal. So, after consulting with our wonderful nurse practitioner at St. Jude, he was put on a Flovent inhaler twice a day. So far, I haven't seen a major difference in his coughing, but, again, we'll watch & see what happens. We go back to him in a month.
On Thursday, Collin had an appointment with an ENT here in Eustis. (Thank God.....one doc close to home! LOL!) The doctor was very nice. And, small world that it is, she went to med school in Tennessee & did some of her training at St. Jude. She even knows the ENT that we've seen in Memphis! Anyhow, she made note of the fluid in Collin's ear, which is not infected. Her suggestion was, with his recent ear infections, that we could have tubes placed to help with the drainage or watch & see what happens next. I told her that I'd like to wait & see. She's comfortable with that. If he gets another ear infection, I'll call her & we'll discuss the ear tubes. I really feel that once he is off chemo & his body gets back to normal, it will be able to deal with these issues on its own.
Now, before I head into Friday, I need to back up a few weeks. (Apparently, I neglected to mention in previous updates that I finally got myself to a doctor for a routine exam that was 3 years overdue.) Last month, I went to the doc. I had my annual exam, which was fine, and some bloodwork ordered. I have a history of thyroid problems, so he wanted to check that. He also ran a full blood panel since it had been so long since I'd seen a doctor. He put me back on Lexapro for anxiety & depression. (Can't imagine why I'd have those problems, can you? LOL!) Anyway, the bloodwork came back a few days later. My thyroid level was out of whack (underactive)& my hemoglobin was low causing me to be anemic. (Both of these contribute to the constant tiredness I experience.) He started me on synthroid for my thyroid. He also ordered more bloodwork to see why my thryroid is not functioning properly & to see if I was low in iron in my diet causing the anemia.
Ok, back to Friday. I stopped by my doc's office to pick up a lab sheet for yet more bloodwork. UGH! It seems that my immune system is the cause for my underactive thyroid. So, now we need to check into auto-immune disorders. One that he is testing for is lupus. It is not hereditary, but, since my mother has it & it is very common in women, it should be considered. He also is having my B12 level tested to see if I have pernicious anemia. This type of anemia is caused by the body's inability to break down vitamin B12. My Grandpa Volk had this, so, again something to consider. He also ordered another complete blood panel to check my hemoglobin level & another thryoid test to see how well the synthroid is working. So, I went to the lab on Monday and I see my doc again next Friday. I'll try to keep you posted. :)
OK, back to CJ! On Saturday, we went to the kick-off meeting for the next season of the Leukemia/Lymphoma Society's Team-in-Training. Why, you ask? Well, Collin has been asked (and accepted) to be the Honorary Coach for the Cycling Team! This is truly special for a lot of reasons. The first is that he will get to be the inspiration for a new group of riders. Secondly, it is one way that we can give something back to the Society for all that they do for our families. We will be cheering the team on all the way! Lastly, I feel that this will be a great way to celebrate Collin completing his treatment. He is scheduled to finish at the end of July. The ride is scheduled for the end of October. Collin & I have set a goal to start riding our bikes so that we may ride the last few mile with the team. Very exciting stuff, I think!
The rest of Saturday was an early Mother's day for me. We went to lunch at Joe's Crab Shack. (One of my favorites!) Later on we went to church & afterward we all went bowling. It was a really great day & we all had a lot of fun!
Sunday was a lazy day. Just hung out around the house & helped Collin complete a science project that was due on Monday. (Thankfully, the boys let me sleep in, so I was feeling pretty relaxed.) I received a recipe book made by Collin's 3rd grade class & a cake decorated by Collin. Later on, I made dinner & mom hung out with us for awhile.
Now, for all of you who have made it to the end of my novella, I have a lovely surprise for you! COLLIN MADE THE HONOR ROLL AGAIN! Yep, our boy did it! He has made the honor roll for every grading period of the school year! I couldn't be more proud. He's missed more than a quarter of the year, and he's still managed to put some very good effort into all of his work! The ceremony will be this Thursday morning & I will take my digital camera. I'll try to take a nice shot to email to everyone & add to his web page.
Well, tomorrow is a long clinic day & Weiner will be heading to the vet for a check up. I'll update later in the week to let you know how things are.
Have a great week & God bless~
Shanon
Sunday, May 7, 2006 9:50 PM CDT
Hello, everyone! I didn't realize how long it had been since my last update. I'm really sorry! It's been busy lately, with school & clinic, etc., but, things have been good.
Two weeks ago, at clinic, everything was good, but, ugh, another red ear drum, so more antibiotics. This time we went with a heavier dose of Augmentin, 875 mg twice a day. Hopefully, it did the trick. It's just so hard to tell with Collin.....he very rarely has any symptoms with ear infections. Most of the time I don't even know until we're at clinic & they are checking him out. Anyway, I'm going to get off of my butt tomorrow & call the ENT here in town to see about getting him checked out.
My biggest concern right now is that he's been running low-grade fevers (99.3 - 99.8) off & on for the last week or so along with an awful cough that he's had for the last month. His lungs are clear. Add all of that together with these recent ear infections & I'm thinking it's probably associated with sinus drainage or lack of. (Lord knows I try, but the boy will NOT blow his nose!) He does have a history of chronic sinusitis when he's on treatment.
We went to Memphis this past week....everything went well. His ANC was 9800! Gotta love what the steroids do to the white count! Anyway, his spinal came back clear & he got all of his other chemo without incident.
A family friend, Tom, is in town, so we let Collin play hooky from school & Jay played hooky from work, and we all (Grandma Nurse, Tom, Aunt Pam & the three of us) went to Universal Studios & Islands of Adventure! Oh, we had such a good time! My little boy is growing up too fast! There was a time when he would cry at the thought of some of the rides he rode on Thursday! We helped Spidey save the day, shot up aliens with the Men In Black, stopped Biff from screwing up the future, rode a unicorn coaster and Collin & Grandma flew up in the sky with the tyranadons (sp?)! It was a good day for everyone!
Well, Collin only has about three more weeks of school left! YIKES! (Guess I better figure out what to do with him for summer time!) We have clinic this Wednesday, along with an appointment with a pulmonologist as well. As for me, I'll be checking in with my doctor in the next few days to see what we do next about figuring out why I'm anemic. I'll keep you posted on everything later in the week.
Have a great week & God bless~
Shanon
Friday, April 7, 2006 3:41 PM CDT
Hello, all! Well, after all of our travels, we are finally home! Yeah! It's been a doozy of a month, but, and here's the best part, drum roll, please...........
ALL TESTS IN MEMPHIS WERE NEGATIVE! SPINAL FLUID WAS CLEAR, BONE MARROW WAS CLEAR & MRD WAS NEGATIVE! THANK YOU, GOD!
I can't even begin to tell all of you how happy I am! We are now 4 months from the end! I am so thankful for all of you who continue to pray for Collin & keep sending those positive thoughts our way.
So, that's what's up! What else, hmmmm, we went to Camp Boggy Creek last weekend & had a very good time (steroids not withstanding - LOL). It was nice family time. Collin is finished with his IV meds, so now we can both get some sleep. And, he went to school today. (Just in time for Spring Break to start on Monday!)
Thanks, again, everyone! I'll be in touch next week! Happy spring!
Hugs & blessings~
Shanon
Thursday, March 30, 2006 6:52 PM CST
Hi, everyone! First, let me thank you all for your good thoughts & prayers over the course of the last few weeks. It has been crazy & I thank you for all of your support!
OK, so, Collin ended up in the hospital in Orlando last Friday to get IV antibiotics as a precaution against a possible line infection. Thankfully, all cultures came back negative. We were released on Tuesday & sent home with IV antibiotics. Kind of sucks, but, I'd rather do them here at home than in the hospital. He also had a chest x-ray, because he has a horrible cough (probably due to post-nasal drainage), which came back all clear.
We went to clinic today. Collin's counts were good. The white count was a bit high, but, that could be count recovery from chemo last week or his ears. Yes, his ears are still full of fluid, but, no longer red. He has not had any fevers & is not complaining of any pain. (Just a lot of 'Huhs' whenever I try to talk to him.) So, he got his chemo & started his steroids this afternoon! Oh, joy! :)
We'll get a bit of fun family time together this weekend, too! YEAH! We will be going to Camp Boggy Creek for a family retreat. I can't tell you how much the three of us are looking forward to it. We always have a great time at Boggy!
Where has the month gone! Seems like we just got back from Memphis & now it's time to head up again. Yep, it's definitely that time again. We are due to head to Memphis on Monday. Collin will get his counts checked, see his doc, have his procedures & get chemo while we are there. I have also put a call in to his doc at St. Jude requesting an appointment with the ENT up there. Hopefully, they'll be able to squeeze that in, too.
Please keep Collin in your thoughts & prayers this week. This cycle he is due not only for his routine spinal tap with chemo, but, they will also perform a bone marrow test & MRD (specialized lab test) as required by his treatment plan. We are getting very close to the end of this road. I get excited & nervous every time I think about it.
Thank you again for always being here for us & keeping us in your thoughts! Have a great weekend, everyone!
Hugs & blessings~
Shanon
Friday, March 24, 2006 3:29 PM CST
Hi, everyone! We are back in town & jumping right back into the craziness that is our lives! Here's what's been going on.....
We went to St. Jude two weeks ago. Everything looked good & his spinal came back all clear! (Thank you, God!) We also met with the physical therapist. She is very happy with Collin's progress. His legs are now of equal strength & stretch. She has OK'd Collin to not wear his braces on the weekends & he doesn't have to wear them to school on PE days. She is thinking that he will be able to stop wearing them by the end of the school year.
We returned to Orlando on Wednesday only to turn around to fly to Cleveland on Thursday. We left 75 & sunny to be greeted by 65 & rainy. Not too bad. The first few days of our trip to Ohio were pleasant, in the 60s and cloudy/sunny. That Monday the temp reached 75 & it was gorgeous. Then.......wake up Tuesday morning to 35 & snow flurries! Unfortunately, none of the snow stuck & the temp hovered in the 30s for the rest of our trip. But, we got to catch up with a lot of family & spend time together. And, Jay bought me a beautiful 3/4 length leather coat while we were in town. Thanks, honey, I love it! (And, you, too!)
Collin was feeling good the whole time we were there. We had a bit of a hassle trying to find somewhere to have his labwork done while we were in Cleveland, but, ending up going to the Pediatric Oncology clinic at the Cleveland Clinic downtown. Collin was seen by the head of the department, Dr. Michael Levian, who was very nice & made sure we had contact info should we have needed anything while we were visiting. Collin's ANC was 730, so he was good to go for his oral methotrexate & nightly 6mp. We did start him on another 10 days of Augmentin, since his ears had not totally cleared up from the previous round.
We returned to Florida on Monday of this week. Arrived back home to 75 & clear! Yeah, warm weather! (But, don't talk to me this summer!!! LOL!) Anyway, Collin returned to school on Tuesday. And, guess what?!! COLLIN MADE HONOR ROLL FOR THE THIRD TIME THIS SCHOOL YEAR! Way to go, baby! He made the A/B honor roll this time. He had 4 A's & 1 B. I couldn't be more proud of him! On top of that, they did some reading and math testing right before we left for Memphis. Collin tested at an 8th grade level in reading! That's my boy! Did I say I was proud of him? Well, I am awed by him! He has missed more than a quarter of the school year & manages to maintain (and grow) his grades and abilities! My son is awesome!
We had clinic today. His counts have recovered. His ANC was 4030. His WBC was 6.9, but, that could be recovery and/or due to the fact that his ears are still fighting infection. Our NP, Angela, looked at his ears today & said they look 'yucky'. So, obviously, the Augmentin isn't working. We will stop it and start him on Cefzil tomorrow. While he was getting his chemo today, his temp kept jumping around. When we arrived, it was 98.8. After his Ara-C push, it jumped up to 99.9. A little while later, an hour after Ara-C & an hour into his 2 hour VM-26, it dropped back to 99.2. Another 30 minutes or so, he hit 101. UGH! Luckily, we were still at clinic, so Angela decided to give him some IV Rocephin. Hopefully, this will jumpstart the Cefzil & his ears will clear up.
So, our week, originally, was supposed to be school on Tuesday, all day clinic Wednesday, school on Thursday & Friday, with a doctor appointment thrown in for me on Thursday. (ME, who hasn't seen a doctor in over 2 years, is finally trying to take care of herself a bit!) Well, what ended up happening is, school Tuesday & Wednesday, clinic rescheduled to Thursday at 9 because the doc is out of town & our NP had a meeting on Wednesday AM, then appointment rescheduled to late AM so that we could attend the honor roll ceremony this morning. Meanwhile, my doctor appointment has been rescheduled to a month from now since it's the earliest they could get me back in! Oh, well! I'll get to a doc one of these days!
On a side note, my mother is doing very well & has gotten a clean bill from the neurosurgeon and the infectious disease doctors. She and Aunt Pam are in Jacksonville tonight to see John Edwards. I wish I could have gone, too. I'm sure it will be very interesting.
Now that I've talked your ears off, I'll sign off. We go back to clinic next Wednesday for counts, chemo &, oh yeah, steroids! I'll talk to you next week!
Love, hugs & blessings to all of you~
Shanon
PS - Since I originally wrote this update last night, here's what's going on today:
Collin has been feeling fine & went to school without any problems. I was going to enjoy the day of nothing scheduled by taking a little nap, then a shower. (Yeah, that happened!) The clinic called me just as I was dozing off on the couch....it seems that one of the cultures that were drawn yesterday was testing positive! UGH! So, they need to have Collin come back in for another set of cultures & another round of IV antibiotics. He is still fever-free, so the doc is thinking maybe the line had a contaminant. If the results are negative tomorrow AM, no more to do about it. If they are positive, we will have to go into the hospital for more IV antibiotics. Please keep us in your thoughts & prayers for negative test results tomorrow. I'll keep you posted!
Love,
Shanon
Wednesday, March 1, 2006 9:47 PM CST
WOW!! First, let me apologize for not updating you in over a month! I am sooooo sorry! So, I'll try to catch things up without dragging on too long.....
Collin & I went to Memphis last month. Everything went great & his spinal came back all clear! Thank you, God! He has been feeling well, up until this last week when he got a cold. UGH! Not only did he get a cold, he decided to share it with Mommy & Daddy! Thank you so much, oh love of my life! (LOL!)
Anyway, Collin had clinic today. His counts were good, but, he has an ear infection. So, in addition to getting his chemo today AND starting steroids, he also has to take an antibiotic for the next 10 days! Poor kid! This is his heaviest week for oral meds & we have to add one more. But, thankfully, he's feeling good & fever free so, onward & upward!
We are heading to Memphis on Monday. This will be week 5 of cycle 8. We have only 5 months left of treatment! I can't believe it! Hopefully, everything will go nice & smooth in Memphis & we will return to Orlando Wednesday evening. On Thursday, we catch another plane to head to Cleveland for Spring Break! Collin & I had travel vouchers and Thursday was the best we could do for the Spring Break week. So, he will miss a week of school in addition to his Spring Break, but, I think, after everything we have all been through over the last few months, we're entitled to a few extra days. Jay will join us in Cleveland on Saturday. I can't wait to get away!
On another note......MY MOM IS HOME! She got out of the hospital on Thursday last week & is slowly starting to feel & act like her old self. She's still pretty weak, but, getting stronger every day! Thank you all for your kind words, prayers & good thoughts! And, a HUGE THANK YOU to my Aunt Pam, who has been staying with mom & taking wonderful care of her. We love you so much, Aunt Pam!
And, one more piece of news.....Jay's youngest sister, Heather, and her hubby, Andy, are expecting their first child! The baby is due August 10th! (BTW, that was Collin's original due date, too!) Congrats, Heather & Andy!
So, that's where things stand. I will update again next week after our trip to Memphis.
Thanks, again, for being here for me. You have no idea how much support you are able to give.
God bless~
Shanon
Thursday, January 26, 2006 10:13 PM CST
Sorry, I didn't update last night, but, yesterday was a long day. Aunt Pam & I were exhausted. Anyway, here's how things went......
I went to Gainesville late Tuesday night to stay with Aunt Pam in a hotel near the hospital. At 6 AM Wednesday morning (YES, I said AM - LOL!), Aunt Pam & I got to the hospital to hang out with mom before they took her down to the surgery pre-op area. Transportation came at 6:45, and away we went. We sat together and talked while they got all of the information organized before mom went to surgery. She was nervous, but, in good spirits. At 7:45, they were ready for her. We prayed together, said we loved each other and said we'd see her later.
The first incision was made at 9 AM. There was a nurse in the OR that would call the waiting area every 2 hours or so to give me an update. By 3 PM, they were starting to close up the incision. The surgeon came out at 4:20 and told us that he was happy with how things went. She did need several units of blood, but, that's not uncommon with this type of surgery. They took a vein from her leg to graft into the section of artery that they removed containing the large celiac aneurysm. They also discovered that a blood clot had formed near her heart in the last week. She would be going up to the ICU unit & they would be consulting the neurosurgeon to see if they could start her on heparin to thin her blood. Hopefully, that will help resolve the clot. (Unfortunately, with the location of the clot, a 'screen' can't be put in to prevent it from moving into the heart or lungs.) The plan was to leave her on the ventilator to let her rest, keep her heart rate down, keep her blood pressure low, manage her pain and let her body start to heal.
Things in the hospital got a little hectic as they received a large trauma shortly after her surgery was finished and the whole hospital was on alert. She was finally transferred up to the ICU at about 7 PM. Aunt Pam & I went in to see her around 7:30. We were pleasantly surprised to see that they had removed the breathing tube and she was breathing just fine on her own. She does have a tube going up through her nose & down into her stomach. This is to remove any blood from the surgery and any bile that may build up. She was aware that we were there even though she was on some heavy-duty pain medication. She was pretty out of it. But, she acknowledged us and told us that she loved us before we left.
Aunt Pam & I spent another night at the hotel. We slept in & slept hard! I got up to the hospital this morning at 11 (which is the earliest they'll let anyone into the ICU), and talked to the doc on duty right after he saw Mom. He was very happy with her status and said that they would be transferring her to the IMC, which is like a 'step down' unit. Not as intense as ICU, but not as loose as the regular floors either. They would also be starting the heparin today. Otherwise, he was satisfied with her progress. Mom was more aware today, but, still in some pain (this will last awhile as her incision is all the way across her belly). She responded to me and opened her eyes a few times before I left.
They transferred her to the IMC this afternoon & I spoke with the nurse caring for her earlier this evening. She said that Mom is settled in and responding to commands and questions. She is aware of where she is & what has been done. They are starting to lift one of the pain meds, but, have given her a pump to administer another one as needed. Her blood pressure and heart rate are good, but, go up whenever she starts to hurt. So, it is a balance trying to maintain all of these things. They have also started the heparin drip tonight.
So, overall it sounds like everything is going in the right direction. Aunt Pam will be going back to the hospital tomorrow & I will be spending as much time as possible there over the weekend.
As for Collin.....yesterday was his clinic day. Jay was able to get the day off of work & take care of it for me since I needed to be in Gainesville with my mom. (Thanks, honey!) His counts were good, 2200, I think. So, he was able to get his chemo (VM-26 & ARA-C), which is some of the longer chemo he gets. It takes a little over three hours to get his counts checked & get this chemo. But, they both did just fine.
Last week at clinic, we learned that one of our nurses, Maggie, would be leaving us. Her husband recently received a job transfer to Atlanta. Maggie has interviewed with Scottish Rite, a great hospital up there. I think she will make a wonderful addition to their staff. I am very happy for her, but, sad to see her go. She will be leaving in mid-February, I think.
When Jay & Collin were at clinic yesterday, they learned that our other nurse, Diane, would also be leaving the clinic. She has some family/medical issues that need to be taken care of, and I definitely understand these things. From the sounds of it, this will be her last week, so I didn't get to say good-bye to her. I am very sad to see her go, as well.
Both of these ladies have been a caring, loving part of our 'family' for the last few years & I will miss them very much. I hope they will both keep in touch. Good luck, gals! We love you!
Thank you all for your thoughts and prayers over the last several weeks. I can't tell you how much they mean to me & all of our family. Please continue to keep us in your thoughts as Mom will need all the help she can get to get through this recovery. I'll keep you posted on her progress.
Love & Thanks~
Shanon
Friday, January 20, 2006 10:24 PM CST
1/24/06 Update on Collin's 'Grandma Nurse'
Good afternoon, everyone! Just wanted to let you know that my mom is scheduled for surgery tomorrow. They will be using a vein from her leg to bypass the artery to the liver that is currently blocked due to the aneurysm in her stomach. After they perform this, they will then decide whether to leave the aneurysm to be dealt with after she heals from the surgery or to go ahead while they are in the abdomen and do something about it then. It's not a routine surgery, but, the doctor assures us that they have experience with these types of surgeries.
After the surgery, she will be in ICU for a few days until the doctors decide that she is recovering appropriately. If all goes well and there are no complications, she should be out of the hospital next week sometime. They will have her come back after that to deal with the kidney aneurysm in another procedure.
Jay is taking the day off of work tomorrow to take Collin for his weekly clinic/chemo appointment. Aunt Pam & I will be spending the night in Gainesville tonight so that we can be there for mom's surgery tomorrow. They have both been so helpful to me in these past weeks that I will never be able to show/tell them how much they both mean to me. Thank you, Jay & Aunt Pam, for all that you do. I love you both!
Please keep us all in your prayers as we go through what is sure to be a long day for all of us. Thank you so much for listening. I'll update again soon.
Love,
Shanon
-------------------------------------
1/20/06
Hi, everyone! It's been another busy week, so, here it goes....
Collin is doing great! We had clinic on Wednesday. His counts were good (ANC 2809) so he was good to go for chemo. We also got the very happy news that he got straight A's this last quarter! Do we have an awesome kid, or what?!! He missed one quarter of the grading period & still made the straight A honor roll! I'm such a lucky mom!
As for my mom....it's been a busy week for her. The headaches are easing up, thankfully, but still get bad. It will probably be awhile before they fade completely. The headaches are a result of the bleed that she had. The body needs time to repair the injury.
She had an angiogram on Tuesday, to get a better look at the aneurysms. She has two...one on the lower lobe of the left kidney & one fairly large one on the celiac artery. This is the artery that supplies blood to the stomach, spleen & liver. She also had a colonoscopy on Wednesday. They removed a few polyps, that seem to be benign. (She has a history of colon polyps.) Yesterday afternoon, they placed a new picc line (a longer term IV) into her upper left arm. Unfortunately, it took three tries to get it, so her arm is very sore today. But, it will allow her to get IV antibiotics twice a day, without the constant needle sticks once she is released from the hospital. I spent the night at the hospital with her last night and today she had a vascular ultrasound. One more test for the vascular surgeons to use in deciding how they will treat/repair the aneurysms. We do know that they will be doing some kind of surgery for the aneurysms next week, but we don't know what kind or when they will do it. I'm hoping that they will have a plan within the next day or two.
Overall, she's not doing too bad. She's very frustrated because, after being in the hospital for two weeks, she's gotten very weak. She's also nervous about the surgery. No surgery is without risk, but, this one is a little more so. Unfortunately, the alternative of not having surgery increases the likelihood that one or both aneurysms could burst, which could be fatal. Please keep my mom in your thoughts & prayers. She needs strength & I think it gives her a lot of hope when I tell her how many people are thinking of her.
I'll let you know more when I know more. For now, thanks for being here for me. It means so much!
Love & Hugs~
Shanon
Sunday, January 8, 2006 0:12 AM CST
First, let me say a belated Merry Christmas & Happy New Year to all! There's been a lot going on the last few weeks, this week in particular, so I'll try to keep it brief!
Collin has been doing very well! Counts have been good & other than an ear infection, he's been feeling good. He was off of chemo for a week while we went to Emerald Isle NC the week after Christmas for a Burke Family Christmas. We had a great time! We got to see all of Jay's family (parents, sisters, brother, their spouses, and our nephew, Isaac, who is adorable at 21 months!). It was a welcome break & we thank Mom & Dad soooo much for making it possible!
Collin had clinic Wednesday morning. His counts were good & he got his chemo. He also started steroids the same day & has been eating imitation crab meat like it's the real thing...warmed up & dipped in butter! (Thank God, because crab legs aren't cheap right now!) Anyway, he & I are scheduled for Memphis on Monday. Hopefully, things will go smoothly & we'll be back home Wednesday evening.
As for my mom, aka Grandma Nurse, she is currently in the hospital at Shand's in Gainesville (which is two hours north of our house). Late Tuesday night, she had a sharp, blinding headache & a little blurry vision. She went to her doc on Wednesday morning, who sent her for a CT scan. The CT tech sent her directly to Fl. Hospital Waterman ER. She was able to drive herself. It seems that she may have had a small stroke, which caused a bleed in her brain. She is on blood thinners for her heart, but, they needed to reverse the thinning to stop the bleed in her brain. She was helicoptered from Tavares to Gainesville Thursday afternoon. She was very out of it all day Friday, due to the pain meds & the pain. The bleed is stable & seems to have stopped. They are just watching it at this point. She was more lucid today & is getting by with Tylenol for pain. All of her other functions are good & she seems to have all of her strength & mobility. We're not sure about the vision yet, but the neurologist seems to think that as the 'injury' to the brain heals, it should be OK. The cardiologist was in today & said that her heart seems to be doing just fine. They are also just going to watch her & maybe later in the week restart her coumadin slowly. So, things are a little touchy but definitely heading in the right direction. Thank you, Aunt Pam, for all you are doing since I can't be with Mom as much as I'd like to be. Thank you, Aunt Nan, for flying down from Ohio to be with Mom. I love you both so much & I'll never be able to tell you how much it means to me to have you both here for us & for Mom.
So, that's the scoop.....please keep my mom in your thoughts & prayers for a smooth & quick recovery. And, if you can, add one in for CJ & I as we head to Memphis.
I'll drop you a note later this week & let you know how things are down here. Thanks for being there for me.....always.
Love & Blessings~
Shanon
Friday, December 9, 2005 11:23 PM CST
Well, this was week 1 of cycle 7 (4 more 8 week cycles to go). Collin & I got to Memphis on Monday evening. BRRRRR, it was COLD! We left Florida at 78 degrees & arrived in Memphis at 28 degrees! But, anyway......His counts were very good on Monday evening. We saw our doc on Tuesday AM. Then it was off to the procedure room for TIT, BMA & MRD tests.
After waking up starving, thank you steroids, we headed off to lunch. Then an appointment with the ENT, who basically agrees with me. We will continue to treat his sinusitis as it arises. We may try Cingulair for the next flare up. Otherwise, once he's OT, his immune system should be able to handle it once again. The ENT was very nice & gave me some info to share with my mom who is still dealing with blood infections possibly linked to her chronic sinusitis. (Gotta love having 2 immuno-suppressed family members!)
Next it was off to the medicine room for Zofran & some heavy duty chemo. (VP-16, aka etoposide, & cyclophosphamide.) Six hours of chemo, anti-nausea meds & fluids makes for a very long evening. But, and here it comes, what makes this all worth it (drum roll, please)...............
ALL TESTS ARE NEGATIVE! (There's my 4 wonderful words!) WOOO-HOOO!
I got the spinal & bma test results on Tuesday & just got the MRD today! Thank God! I love getting my Christmas presents early!
So, we are home & working on ornaments to send with our Christmas cards. Collin does have a little bit of a cold, but, hey, we can handle that, right? :) Maybe now, I'll be able to get into the spirit & get some shopping done! (Even if it is on-line! LOL!)
My thoughts & prayers are with all of you this holiday season. I hope you know just how much you mean to me & my sanity! (Pharmaceutically balanced though it is! LOL!)
Hugs & Blessings to all of you~
Shanon
Saturday, December 3, 2005 11:49 PM CST
Good evening, everyone! Well, it's been a doozy of week, so, I'll get right to it.....
Thanksgiving was great! Good food, family & beautiful weather! Unfortunately, my mom had to return home from Orlando because her blood test from Tuesday came back positive for another blood infection & her doc was considering admitting her to the hospital. This is the 3rd one since September that she's had a blood infection. (The last two have been the same bacteria.) UGH! Collin & I hung out with Aunt Pam & Uncle Jack on Friday while Jay went to work. He did return to Orlando Friday night.
On Saturday, my mom returned to the Erich home (now on oral antibiotics) and we all loaded up a bedroom set & tv hutch that Aunt Pam & Uncle Jack gave us. (They are in the process of moving.) So, Jay & I returned home with a truck & a van full of furniture while Mom, Aunt Pam & Collin hung out. Jay & I returned to Orlando late on Saturday night.
Saturday evening I learned that one of our friends from Memphis passed away. Pamela Hensley was a beautiful young woman who fought Osteosarcoma for more than 2 years. She was funny, faithful & had a very positive attitude. She will be missed very much. Please keep her family in your thoughts and prayers.
On Sunday, we moved some furniture from the Erich home to Dave's house. (Dave is Aunt Pam's father.) We moved some other stuff out of Dave's house that was being given to my mom & moved the other stuff into his place. Jay headed home from there, while I went back to get my kid & dogs. Then I headed home.
On Monday, Collin headed off to school & had a good day. My mother got a call from her doc that she wanted to admit her to the hospital (she had talked with an infectious disease doc) so that she could have a PICC line placed in her arm for a several week course of antibiotics. She also wanted to do a CAT scan of mom's sinuses. No problem, just an overnight stay, right? HA! They got the scan done on Monday & the line placed on Tuesday. They also performed an special type of echo on her heart valve (she has a mechanical aortic valve) to see if that could be the source of the infection. I think they did that on Wednesday. That was negative. But, she ran a fever after the procedure so the I.D. doc said she had to stay another night. On Thursday (?), they did a CT scan of her abdomen, since this type of bacteria typically originates in that region. This scan was also negative. On Friday, they performed ANOTHER test! This one was an Indium Scan. They remove about 30 ml or cc of blood, send it to Orlando where they seperate the white blood cells then expose them to a type of radiation. This blood was then injected back into my mother. Then they do another type of scan to look at the radiated white cells to see where they are hanging out since they are the infection fighters. I believe this one was also clear. So, they finally released her Friday night! Thank God! For now, she is on two weeks (at least) of IV antibiotics that she gets at the hospital twice a day. Hopefully, this will knock out the infection. She also has an appointment with an ENT on Friday to evaluate her chronic sinusitis. (By the way, her sinuses were packed with 'gunk' on the CT scan.) Overall, she's been feeling good, just a bit tired. Please keep her in your thoughts that she will finally get rid of this infection. Being immuno-suppressed, she gets stuff very easily and it can become very serious, very quickly.
As for Collin, he has been doing well this week. His sinuses also started draining again. Double UGH! He had clinic on Wednesday & all went well. His counts were good....ANC 1887, WBC 3.7, Hct 31.9, Hgb 10.9 and Platelets 195. He got his IV chemo & started his 5-day course of steroids. Yep, it's that time of the month again! (For both of us! LOL!!) So far the moods haven't been too bad. He did have a meltdown last night. He was arguing with me about whether or not he had fallen asleep on the couch! Boy, did he get mad at me! The eating hasn't been too bad, but, beware, if I don't have some rye bread & butter around, I'm gonna be in big trouble! (Not toasted, just buttered rye bread!) Oh, and we've got to wash it down with Egg Nog! Yummmy! NOT!
Finally, today was a very nice day! We went to Orlando for our clinic's Christmas party. It was very nice, but, Collin was kind of achy (thanks to his chemo, vinblastine) to really enjoy some of the activities. Plus, he's not sleeping very well (thanks to the steroids) so he just wanted to leave after awhile. On the way home, we stopped at a U-Cut tree farm & picked out our Christmas tree. (After a 15 minute discussion with Collin about whether the tree would fit in our house & his concern over it not lasting more than the holiday season.) We dropped it off at home & headed out to dinner. It was a good day for Family day. Unfortunately, we didn't make it to church, but, I hope God will forgive us.
Anyway, Collin & I head to Memphis on Monday. In addition to the usual clinic & spinal tap, he will also see an ENT about his sinuses & he will get a bone marrow test at the same time as his spinal tap. He gets a bone marrow test every four months to confirm his remission. Please keep us in your thoughts & prayers for safe travel & continued remission.
Thanks for getting to the end of my story! Have a great weekend! I'll update you all when we get home!
Love & Blessings to all of you~
Shanon
Saturday, December 3, 2005 11:43 PM CST
Good evening, everyone! Well, it's been a doozy of week, so, I'll get right to it.....
Thanksgiving was great! Good food, family & beautiful weather! Unfortunately, my mom had to return home from Orlando because her blood test from Tuesday came back positive for another blood infection & her doc was considering admitting her to the hospital. This is the 3rd one since September that she's had a blood infection. (The last two have been the same bacteria.) UGH! Collin & I hung out with Aunt Pam & Uncle Jack on Friday while Jay went to work. He did return to Orlando Friday night.
On Saturday, my mom returned to the Erich home (now on oral antibiotics) and we all loaded up a bedroom set & tv hutch that Aunt Pam & Uncle Jack gave us. (They are in the process of moving.) So, Jay & I returned home with a truck & a van full of furniture while Mom, Aunt Pam & Collin hung out. Jay & I returned to Orlando late on Saturday night.
On Sunday, we moved some furniture from the Erich home to Dave's house. (Dave is Aunt Pam's father.) We moved some other stuff out of Dave's house that was being given to my mom & moved the other stuff into his place. Jay headed home from there, while I went back to get my kid & dogs. Then I headed home.
On Monday, Collin headed off to school & had a good day. My mother got a call from her doc that she wanted to admit her to the hospital (she had talked with an infectious disease doc) so that she could have a PICC line placed in her arm for a several week course of antibiotics. She also wanted to do a CAT scan of mom's sinuses. No problem, just an overnight stay, right? HA! They got the scan done on Monday & the line placed on Tuesday. They also performed an special type of echo on her heart valve (she has a mechanical aortic valve) to see if that could be the source of the infection. I think they did that on Wednesday. That was negative. But, she ran a fever after the procedure so the I.D. doc said she had to stay another night. On Thursday (?), they did a CT scan of her abdomen, since this type of bacteria typically originates in that region. This scan was also negative. On Friday, they performed ANOTHER test! This one was an Indium Scan. They remove about 30 ml or cc of blood, send it to Orlando where they seperate the white blood cells then expose them to a type of radiation. This blood was then injected back into my mother. Then they do another type of scan to look at the radiated white cells to see where they are hanging out since they are the infection fighters. I believe this one was also clear. So, they finally released her Friday night! Thank God! For now, she is on two weeks (at least) of IV antibiotics that she gets at the hospital twice a day. Hopefully, this will knock out the infection. She also has an appointment with an ENT on Friday to evaluate her chronic sinusitis. (By the way, her sinuses were packed with 'gunk' on the CT scan.) Overall, she's been feeling good, just a bit tired. Please keep her in your thoughts that she will finally get rid of this infection. Being immuno-suppressed, she gets stuff very easily and it can become very serious, very quickly.
As for Collin, he has been doing well this week. His sinuses also started draining again. Double UGH! He had clinic on Wednesday & all went well. His counts were good....ANC 1887, WBC 3.7, Hct 31.9, Hgb 10.9 and Platelets 195. He got his IV chemo & started his 5-day course of steroids. Yep, it's that time of the month again! (For both of us! LOL!!) So far the moods haven't been too bad. He did have a meltdown last night. He was arguing with me about whether or not he had fallen asleep on the couch! Boy, did he get mad at me! The eating hasn't been too bad, but, beware, if I don't have some rye bread & butter around, I'm gonna be in big trouble! (Not toasted, just buttered rye bread!) Oh, and we've got to wash it down with Egg Nog! Yummmy! NOT!
Finally, today was a very nice day! We went to Orlando for our clinic's Christmas party. It was very nice, but, Collin was kind of achy (thanks to his chemo, vinblastine) to really enjoy some of the activities. Plus, he's not sleeping very well (thanks to the steroids) so he just wanted to leave after awhile. On the way home, we stopped at a U-Cut tree farm & picked out our Christmas tree. (After a 15 minute discussion with Collin about whether the tree would fit in our house & his concern over it not lasting more than the holiday season.) We dropped it off at home & headed out to dinner. It was a good day for Family day. Unfortunately, we didn't make it to church, but, I hope God will forgive us.
Anyway, Collin & I head to Memphis on Monday. In addition to the usual clinic & spinal tap, he will also see an ENT about his sinuses & he will get a bone marrow test at the same time as his spinal tap. He gets a bone marrow test every four months to confirm his remission. Please keep us in your thoughts & prayers for safe travel & continued remission.
Thanks for getting to the end of my story! Have a great weekend! I'll update you all when we get home!
Love & Blessings to all of you~
Shanon
Thursday, November 24, 2005 9:27 AM CST
Happy Thanksgiving!!
Good morning, family & friends! I can't begin to tell you all how very much you mean to me and how blessed I feel to have each and every one of you as a member of our family. I love you all very much and hope that you know just how truly thankful I am that you are a part of our lives. May God bless each and every one of you with happiness, health & much love today and every day of the year.
Well, Collin has had a great week! He's been feeling very good and having fun. He & I went down to the park near our house the other night. We took a walk along the boardwalk on the lake. It was a brisk evening & the sun was setting. I just looked at my beautiful son and appreciated so much that he is here and a wonderful part of my life, regardless of what we are going through. I am so lucky to have him.
His counts were very good yesterday & he was able to get his chemo. Yeah! After clinic, we headed down to Aunt Pam & Uncle Jack's house. I made stuffing last night & got the birds into the oven this morning. It's going to be a GREAT day! I love my family, the weather is beautiful and we are here together. That's all that really matters.
I hope all of you are feeling as blessed as I do today. I hope you have friends & family around you. I wish you all a very happy Thanksgiving!
Love & Blessings~
Shanon
Wednesday, November 16, 2005 11:10 PM CST
WE ARE BACK ON TRACK!! YAHOO!
Yes, Collin had clinic today & his counts are great! (Actually, a little high, but that's what happens when you haven't had any chemo for 3 weeks!) His ANC is 5022, WBC 8.1, Hct 37.9, Hgb 12.4 & Platelets 318. Thank God! And a big thanks to all of you who have kept us in your thoughts & prayers.
So, Collin got his IV chemo today (methotrexate) & will be getting oral chemo (6MP) nightly for the next week. He has been feeling very good & he looks great!
On the downside of today, we had an appointment for Collin to see his pediatrician to get a flu shot this afternoon. UGH! What a fight he gave! I can't blame him, but, it just made an unpleasant event even more difficult. I even got one while we were there. Keep two things in mind: 1) I am a big wuss! I hate needles & haven't had a shot in at least 3 or 4 years! 2) I could not even wince or cringe, because Collin was watching me the whole time. (And, man oh man, did it hurt! My arm is still aching!)
Next on our schedule for the week......my mother & I are going to join Collin for lunch at school tomorrow. He has asked us to come because it is the "Holiday Lunch", turkey, etc. After school, he has an appointment to meet his therapist & set up a schedule.
Well, that's all for now......I hope you all have a good week & a great weekend!
Hugs & Blessings~
Shanon
Monday, November 14, 2005 9:32 AM CST
Hi, everyone! Sorry, I didn't update sooner. Here's the scoop.....
Collin was discharged from the hospital on Thursday! Thank you for all of your thoughts, prayers & words of support. His counts were still low, but, on the rise, and he was acting really goofy. (It seems that he gets goofy whenever he's really feeling good, so I knew he was on the mend.)
We spent the weekend with Aunt Pam & Uncle Jack & just chilled out. Collin and Daddy went out to lunch on Saturday & bummed around at Bass Pro Shop. On Sunday, we met up with Miss Terri & the BASE Camp families for a fishing outing. The fish weren't biting, but, she had a big bounce thing (like at carnivals), so Collin was very happy. Today, Collin is back at school.
I've been in a 'funk' for a good part of the weekend, but, I'm feeling better today. While we were in the hospital, Collin's hair started falling out again. I know it happens & that it's a sign that his chemo is working, but, it's so hard to see it sometimes. Collin gets monthly TITs (triple intrathecals) along with VP-16 & cytoxan. (All of these drugs can cause hair loss.) So, although his hair often thins out, it doesn't usually get so thin that it needs to be shaved down, just evened out. Well, this week it did. It was so thin & patchy/scraggly that I convinced him we needed to shave it all. It was totally gone in a few spots & very thin in others. The whole time we were in the hospital, he shed his hair, a little each day. I don't know if it was because we were in the hospital or what, but it was so 'in your face' to me this week. I was having some bad moments. Don't get me wrong.....he looks soooo handsome when he's bald, but it's just such a reminder of all that he's gone through, is still going through & has yet to go through. It's just so damn unfair what these kids are going through!
Anyway, Collin goes back to clinic Wednesday morning. Please keep him in your thoughts & prayers, that he is recovered enough to get his chemo & get back on track.
Thanks for listening to me & always being there for me. Have a great week!
Love & blessings,
Shanon
Sunday, November 6, 2005 5:05 PM CST
Well, what was supposed to be a relaxing day at home turned into 6 hours at the Pediatric ER in Orlando.
Collin has been on antibiotics since Wednesday for sinusitis. Well, yesterday he had a temp of 100 & a headache......pretty much par for the course with sinusitis. Today, he woke up at 6:30. At 7, he asked Daddy for tylenol for a headache. As is our habit before giving tylenol, Jay checked his temp......101.5! Yikes! Woke me up at 7:15, which really stinks because I didn't fall asleep last night until 3am! So, knowing that his ANC was only 80 on Wednesday, we had to call the clinic. Our NP, Angela, called back & said to bring him in for blood cultures and a possible hospital stay.
We got to the ER by 8:45. (It's an hour drive from our house.) We immediately got taken back to the Peds ER. (Thank God we have one!) By 10:30, blood had been drawn for cultures & counts and he had gotten a chest xray. Angela was in the hospital doing rounds, so she made it down to us in the ER about 11:30ish. I was fully prepared for us to stay for at least a day or two & so was Angela. Collin's ANC was heading back up today...it was 252. After she examined Collin & talked to the doc, it was decided that he could have a dose of IV antibiotics and go home! Thanks, Angela! We go back into the clinic in the morning for more antibiotics, counts & to have a CT scan of his sinuses scheduled.
So, while it was a long day, I thank God that Collin's counts are on the way back up & he is generally feeling & looking good enough that Angela didn't feel the need to admit him to the hospital.
Thanks for listening to me rant.......have a good evening, everyone!
Love,
Shanon
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Thursday, November 3, 2005 10:23 PM CST
Good evening, everyone! I hope everyone is doing well & staying warm!
For some reason, I wasn't able to post on his website last week, so, in a nutshell......Hurricane Wilma left us unscathed, Thank God! We went to Memphis & everything came back negative. Again, Thank God!
Things have been going pretty well around here. Halloween was fun & the weather was very pleasant.
Collin has been feeling very good, but, once again, his sinuses are draining. We went to clinic on Wednesday & his counts were the pits! His ANC was only 80! The rest of his counts were ok. (WBC 1.6, Hct 26.9, Hgb 9.3 & platelets 164.) So, he's on another antibiotic for another 10 days. His counts should be on the way up & his chemo was put on hold until next week. So, hopefully, with the antibiotics on board, his counts will bounce back & he'll be back on track for chemo next week. (Fingers, toes & everything else crossed! LOL!)
It looks like we'll be getting Collin to a therapist, finally. We had to wait for some of their current cases to be resolved before Collin could be added. We will meet with the therapist on Monday for a general 'get to know you' thing & work out a plan for Collin. Overall, he's been doing very well, emotionally, but he does have his moments. I think that it's understandable that he have some issues/feelings to work out, since he's been dealing with leukemia for almost 5 years. I think it will be very beneficial for him to have someone outside of this 'stuff' to talk to.
Well, that's about it for now. Jay is keeping busy with work & my mother is feeling pretty good. I've finally found some motivation & cleaned out the laundry room this past week. Next is the dining room, I think. (We still have some repairs (drywall) from the hurricanes last year that need to be taken care of in there.
The boys have their bowling league on Saturday & Collin has an appointment to have his picture taken on Sunday. Then, I need to start thinking about Christmas cards & what ornament/craft Collin & I will be putting together for them this year. Thank God for normalcy!
Take care, have a great weekend & I'll talk to you next week!
Hugs & blessings~
Shanon & the gang
Monday, October 17, 2005 11:14 PM CDT
Good evening, everyone! I hope you are all doing well & enjoyed your weekend! We Floridians are finally getting a break from the heat & humidity & loving it! Welcome, Fall!!
Once again, things have been & are going to be a little busy around the Burke home! The most exciting news is (drum roll, please!), Collin has made the Honor Roll for the first quarter of 3rd grade! He had straight A's!! In addition, he received E's (excellent) marks in all categories of character development! I can't tell you how proud I am of him! This quarter consisted of 50 days. Of those days, Collin missed 11 full & 5 half days due to clinic visits, St. Jude trips & illness. All of his missed work was done, just him & I (either here at home or while in Memphis), no tutoring needed. (Well, maybe Mom could have used a little help! LOL!) I'm just bursting with pride! Can you tell?
Anyhow, last Friday was clinic day......he's pretty much over the sinusitis & his counts were high enough to get his full dose of chemo. (ANC 520, WBC 2.6, Hct 34.9, Hgb 11.8 & platelets 156.) Everything seems to be recovering nicely. Thank God! We go back to clinic this Wednesday for chemo, counts & the ok to start (da, da, da, dum!) steroids.
Saturday morning, Daddy & Collin were back on track with their bowling league. (It's more of a bonding/have a good time thing!) I went along & am happy to report that Collin scored a strike & 3 spares over two games! He & Jay really have a great time! At the end of the league, Collin will have his very own Star Wars bowling ball.
After bowling we headed down to Orlando. Our favorite local charity, BASE Camp, hosted a Halloween costume party & overnight (sleep over) for the kids. It was held at a cheerleading/tumbling gym equipped with foam floors, tumbling track, padded walls & a trampoline. This was Collin's first time spending a night with the group. (Without Mom or Dad!) He seems to have had a great time, but was very tired & sore when we picked him up. I don't know how long it's been since he's been really active like that. (Jumping, running & bouncing around!) I'm not surprised that he's still a little achy today! Heck, I get sore just thinking about it! LOL! Thanks to Terri, the founder, and the fearless group of volunteers (most from UCF, I think) who ran herd on 30 kids all afternoon, night & Sunday morning!
I can't say enough good about Terri Jones & BASE Camp! I don't know how she does it, but, I know that she loves the kids! She has a HUGE heart! She works on a shoestring budget, has only 2 paid staff members (herself & one board member, I think), manages to take lunch to two clinics once a week, host monthly milestone parties, host monthly outings for homebound & preschool kids, arranges a monthly overnight, a Christmas in July party, a prom & so many other things! She does this for the kids dealing with cancer & other catastrophic illnesses, as well as their siblings, and has started to include children who have a parent with cancer. She also helps the families whenever possible. She's helped with fundraising for families, locating items for a family and arranged for me to have a laptop for our Memphis trips (with the help of another mom). She's an amazing woman & I thank God for her & all that she does! www.basecamp.org
Which brings me to the next bit of excitement for Collin.....Lennar/US Homes is one of BASE Camp's sponsors. This Wednesday, they are sponsoring a charity golf event to raise funds for BASE Camp. At the event, one of BASE Camps' programs, Clubs for Kids, will be giving golf clubs to some of the children.....Collin is one of them! He enjoys going to the driving range & putt putt courses, so he's very excited to get his own set of clubs!
With everything else that's been going on, we've also had some visitors from up North. My mom's sis, Aunt Nan, came down for a week. It was really good to see her & Collin loves having her around. She headed home last Wednesday. On Saturday, another Ohioan, 'Uncle' Tom, a friend of my mother's, arrived. He & Collin have become good buddies. He'll be here until Saturday.
Wow! Did I run long or what! Thanks for sticking with me to the end! I feel so truly blessed & want all of you to be able to share in our happiness & excitement!
Love,
Shanon (One long-winded & very proud momma!)
Wednesday, October 12, 2005 10:16 AM CDT
Good morning, all! Just wanted to tell you how Collin is doing this week.
Collin spiked another fever Monday afternoon, but it came down within the hour on its own. This time it was only 100.0, but, I called the clinic anyway, per their instructions. They told us to come in on Tuesday for blood cultures, chest x-ray and counts check.
Well, Collin went all day yesterday without a fever. He has now been fever-free for almost 48 hours. Anyway, we went to the clinic, got the chest x-ray done and had lunch. We went back to the clinic for his appointment at 1:30. The nurse drew blood for cultures and counts. The chest x-ray came back clear, Thank God. His counts were low, ANC is 224, but he has 30onocytes, so he should be back above 500 within the next day or two. He was scheduled to get one of his heavier chemo meds today, but, we want to give him a few more days to recover from the sinusitis, so we'll wait until Friday. Other than a cough, Collin is doing much better.
He has missed 4 days of school over the last week and he seemed to really miss it, so I sent him today. Hopefully, he'll have a good day and enjoy seeing his friends and teachers. He really likes Mrs. Baker. She's a very caring and concerned teacher. She and I have a good rapport and we make sure that Collin is on-track with his assignments for his missed days.
So, we're back on track for chemo on Friday and starting to get back into the groove of things. I hope you all have a blessed week!
Love & Hugs~
Shanon
Monday, October 10, 2005 11:44 AM CDT
Good afternoon, everyone! I hope you've all had a good week & weekend. Once again, it's been kind of busy....so, here it goes!
First of all.....Las Vegas was amazing! Even if you are not a gambler, I would suggest going. Just to see the hotels & shopping would take days! And, I highly recommend a visit to the Hoover Dam. It was AWESOME! It amazes me to think of what humans can accomplish when we work together. The Dam is a prime example. Jay & I had a great time. We needed the time together & I think we both feel a lot better. Thanks to Mom & Aunt Pam for holding down the fort & for taking such great care of Collin! We love you both more than words can say!
Jay & I returned on Tuesday night. Wednesday, we were right back into the thick of things. Jay headed back to work & I had to take Collin to clinic. His counts were a little low, ANC was 492, and he had been running a low-grade fever with mild headaches off & on Monday & Tuesday. So, his chemo was reduced by 50% & he was put on antibiotics for sinusitis. (He suffers from chronic sinusitis when he's on treatment.) I kept him home from school & we just relaxed.
Wednesday night, he spiked a temp of 100.9, so, of course, that meant a call to the doc & possibly a hospital stay. (When counts are that low & the child runs a fever the doc will usually have blood cultures drawn, admit the child and start IV antibiotics. At this point, his immune system is very low & it's hard to fight off an infection of any kind.) I got a call back from the nurse practitioner that saw him in clinic. When she called his temp was already going back down to 100.3 without any tylenol. She feels confident that it's just the sinusitis and told me to give tylenol as needed, check his temp & just keep an eye on him. If the temp goes above 102, then we are to head to the ER.
He's been on antibiotics for 5 days & is still running between normal & 100. I agree with her, that it is his sinuses. He feels pretty good overall and is a little more tired than usual, but, he's starting to seem more like himself. I talked to the clinic this morning & the doc says that if he hits 100 again, we'll need to come in for chest xrays, blood cultures & IV antibiotics to try & knock this thing out. So, we wait & see & hope the meds do what they're supposed to do.
As for me, well, I went ahead & took a personal leave of absence from work. That gives me three months to decide what I am going to do. I really enjoy working & it takes my mind off of things, but, right now, I'm needed here more than there. And, I still have my books & the computer to 'veg-out' with when I need to.
Hopefully, Collin will continue rebounding & we'll be on track for chemo on Wednesday. I hope all of you have a great week! I'll be in touch!
Hugs & blessings~
Shanon
Thursday, September 29, 2005 10:27 PM CDT
Hello, family & friends! First, I want to say 'Thank you' to all who were able to go to Chili's on the 26th. I hope you had an enjoyable meal as you supported our family, St. Jude's & so many others!
Collin & I had a fairly smooth St. Jude trip. The only problem was, he didn't want to have his teeth cleaned. Who does, huh? We ended up skipping it because he made such a fuss. We'll try again another time. Otherwise, his counts were good, his spinal was clear & he had no vomitting! Thanks for all of the thoughts & prayers! Keep 'em coming because they are working!
Collin had a great day at school today! He got to be the VIP! The VIP is chosen by the teacher & is a different child every day. They have to complete the day's work first thing in the morning. Then, off to the school office they go to help out in whatever way they can. He held the flag on the 'in-school' TV for the pledge & helped sort papers, etc. He then got to go help out in the Media center/Library. According to him, he did whatever needed to be done. He was really proud!
My mom is doing better overall, but, ran a fever again today. The doc put her back on antibiotics. The feeling is that she was on long enough for the two major infections, but not long enough for the sinus infection. So, she's a little punky but 'OK'.
As for me, I'm doing laundry & packing again! This Saturday is my 30-something birthday! Jay & I are going to Las Vegas for 4 days! I have wanted to go for a long time. I'm very excited, but a little nervous to be so far away from Collin. I have faith that my mother & my aunt will take good care of him. (Or, maybe, he'll be taking care of them at the end of the day? LOL) He probably won't even miss me!
I hope you all have a great weekend! Talk to you next week!
Hugs & God Bless~
Shanon
Friday, September 23, 2005 9:41 AM CDT
Good Morning, All! I hope you've all had a good week! Things are getting back to 'normal' here, whatever that may be! LOL!
Mom is doing well. She's been home & going to the hospital for IV antibiotics daily. She's still kind of tired, but, more like herself again.
Collin is doing well, also. Besides the allergies/cold that he's been dealing with, it's been a good week. We went to clinic on Wednesday. His counts were good: ANC was 1887, wbc 3.7, hct 31.5, hgb 10.9 & platelets 184. So, he got his chemo & started his steroids. (So far, so good.) They also tested his liver functions again & they were all within normal ranges. So, Collin started back on his Bactrim & we will retest his levels next week.
It's that time of the month again....lol! We are heading off to St. Jude on our monthly visit this Sunday. Please keep us in your thoughts & prayers for safe travel, negative test results & an overall smooth visit.
On another note, PLEASE, consider going to or ordering from a Chili's restaurant near you on Monday, September 26. ALL of their profits for the day from ALL of their US locations go to support the children & families of St. Jude Children's Research Hospital. I really believe that they are doing some of the best work on children's cancer & blood diseases at St. Jude. I thank God that we were directed to such a wonderful, loving & supportive group of doctors, nurses & staff.
I'll drop a note next week & let you know how it went!
Have a great weekend!
Love,
Shanon
Monday, September 19, 2005 4:44 PM CDT
Hello, all! What can I say? It's been a doozy of a week. Here it goes.....
I'll start with Mom.....she was feeling really lousy on Tuesday. Fever, headache, nausea & one epidsode of vomitting. It took a little to rouse her, but she came around & took a shower. We both thought, must be some kind of flu. So, I checked on
her a few times & let her try to sleep. Wednesday was clinic day, so I checked on mom briefly...no fever, just tired & a bad headache. So, off we went.
Collin's counts were good. His ANC was 1395, wbc 3.1, hct 36.6, hgb 12.3 & platelets 203. So, he was good to go for his 2 hour chemo. No problems. On the way home, he threw up once, but, other than that, he was ok.
Get home, check on mom. She's now running a fever of 102.4 & very lathargic. Can hardly get her to wake up to talk to me. I called her doctor's office & they got her in within the hour. I gave her some Tylenol, got her dressed & fought to get her in the car. We get to her doctor's office & everyone is very worried! At one point her doctor comes in, looks at her & asks why is she here & not at the hospital! I'm not a doctor! My mother is very stubborn & fought the idea of an ambulance. Then the doc says that my mother is determined to die in her office! Oh, my gosh! I can't believe this woman! (Needless to say, I will be pushing my mother to find another doctor!)
Anyway, she apparently did not feel an ambulance was necessary after assessing Mom, but did decide to directly admit her to the hospital. So, off we go to the hospital. They were very good & got her in very quickly. The tech drew blood cultures & other lab tests. Then they sent her off for xray & cat scan. Right away, they found out she had a very bad sinus infection. When she got back, they started her on some antibiotics & later on iv fluids. (She was dehydrated.) Later that night or Thursday, they told me she also had a blood infection & a urinary tract infection. I met with the ifectious disease doctor on Thursday who was very nice. It was all very scary, but she started to turn the corner that night, 4:30 AM to be exact. She called me wondering why I wasn't up to see her yet. LOL! She had her days & nights a little confused. :)
Friday, the doc ok'd her to come home, but she has to do out-patient IV antibiotics for the next week & follow up in his office. She's been pretty weak & the antibiotics aren't helping that, it's pretty strong stuff, but she seems to be feeling more like herself again. Thank God!
On top of everything else, I got a call from Collin's clinic on Thursday. His liver functions were way up! They told me to hold his Bactrim this week. (He takes Bactrim 3 days a week/2x a day to prevent a type of pneumonia that immuno-suppressed people are susceptible to.) Apparently, they think the Bactrim is the cause of the elevated liver functions. I had never heard this before. I know that his chemo can cause this and methotrexate in particular can do it. He had just had methotrexate the week before. So, we'll see what happens when the run the labs again this Wednesday.
Saturday, Jay & Collin went to a Cub Scout camp out. Lots of fun stuff to do on a very hot day! Collin climbed the inflatable rock wall twice, crossed the rope bridge, shot bb guns & archery. They had a really good time, but Collin was hot & exhausted by the end of the afternoon. Instead of camping out, he wanted to come home. He also received his Bobcat patch.
On Sunday, we went to the Disney Marketplace to meet up with Jay's sister, Heather, and her husband, Andy, who are vacationing at Disney from Ohio for the week. First stop? Those who know Collin well, know we met up at The Lego Store! It is very cool since they remodeled it! For those who have never been & might be headed down that way, it's a must see for all Legomaniacs! We had lunch at the Rainforest Cafe. It was a bit pricey, but, the atmosphere was definitely cool! It was like being in a Rainforest with 'storms' every 20 minutes or so! I'd recommend going at lunch time. The wait for dinner can be up to 3 hours! We had to wait about 15 minutes.
The rest of the afternoon we spent checking out some of the stores....there are some very cool ones! Then took the boat over to their hotel to hang out for awhile & just visit. (Of course, the guys had to take that opportunity to catch up on the sports scores!)
So, here it is, Monday, and Collin's allergies are acting up pretty badly! He was stuffy & coughing this morning so I let him stay home from school. He's been feeling & sounding better this afternoon, so I think he'll be ok to go tomorrow. As for me.....I just want this rollercoaster to stop so I can get off! LOL! Hopefully, things will settle back into our normal & everyone will be feeling much better.
We have clinic again on Wednesday & steroids are due to start. Yippee! So, much for getting off of my rollercoaster! I'll let you know how things are later in the week.
I want to give all of you a big cyberhug & much thanks for all of the thoughts, prayers & support that you have given me this week. Obviously, they were heeded. I love & appreciate you all so much. Thank you!
I also want to let you know that Collin is doing a fundraiser for school. I emailed some of you, but, figured I mentiion it here. Go to (cut & paste this link) http://www.sallyfoster.com/store/?studentID=142452&school=754571&waveID=1&refID=0 & take a look! They have giftwrap, gifts, chocolates, bath & body products & whole bunch of other stuff. If you decide to place an order, Collin will get credit toward prizes & the school will get credit for the order. Just be sure to the link!
Take care & have a great week ~ Shanon
Thursday, September 8, 2005 11:22 AM CDT
Good afternoon, everyone! I just finished updating a friend's website, so, I figured I'd better get around to doing Collin's page, too!
Things have been busy! We got back from Memphis without any problems, thankfully! Collin went to school on Thursday & Friday. The boys went to the park on Saturday morning. That evening, we went to church & then to dinner. It's become 'Family night' for us & we really enjoy the time we spend together.
Sunday & Monday, we spent at Aunt Pam & Uncle Jack's house. We had a great time hanging out & swimming. Collin & I kicked a soccer ball around in the rain on Sunday afternoon. I do love playing in the rain! Still!
Tuesday evening, Collin & I went to his first Cub Scout meeting. Not much of a turn-out, but, hopefully that will improve. We are planning to attend a camp out later this month. We are also planning a Pancake breakfast to raise funds for the pack and a car wash to raise funds for Hurricane Katrina victims. It seems like a good group. I will be spending this Saturday at a training meeting for committee members. I am going to be the awards chaiperson for our pack. Collin, Jay & I look forward to all of the fun things that will be going on this year!
Collin got his progress reports this week. I am proud to announce that he got all A's! Language arts, Spelling & Math! He's still enjoying school & doing very well!
We had clinic yesterday. His counts were good: ANC 1666, Hct 32.7, Hgb 11.4, WBC 3.4 & platelets 238. He got his IV chemo & started his week of oral chemo last night.
On a sad note, our friend, Little Mark, age 2, who has been fighting neuroblastoma for over a year now, is going to be joining the Lord soon. Unfortunately, the doctors cannot do anything more for him, other than try to ease his pain. Please keep the Weir family in your prayers. This breaks all of our hearts & makes us feel so helpless. Cancer sucks! Heather, Mark, Hayley, Cody & Little Mark, we love you & pray for you all!
Well, that's about it! Whew! I have to work tonight & tomorrow, so my mom & Collin will be hanging out together in the evenings! Thanks, Mom! I can always count on you!
Have a great week!
Love,
Shanon
PS ~ If you haven't heard about it yet, check out Chili's website, www.createapepper.com. On September 26th, 100f their profits for the day will go to St. Jude Children's Research Hospital! Please, tell everyone you know & head out for lunch &/or dinner to support all of our St. Jude family! You can create a pepper & dedicate it on the site, as well as buy a tshirt or make a donation to St. Jude's. (The code for the pepper that I did is 6303.)
Tuesday, August 30, 2005 4:22 PM CDT
Good afternoon, everyone! First I want to say, I hope that those who were affected by Hurricane Katrina had minimal damage & that all of your loved ones are safe & sound. You have my prayers!
Well, we are in Memphis today. Collin & I arrived yesterday afternoon. He had a dental xray & dental exam. He also had a physical therapy evaluation. (Collin has been wearing leg braces for about 4 months now, due to peripheral neuropathy caused by one of his chemo meds.) The physical therapist is very happy with how his braces have helped. She now wants us to take the braces off & go to the park on the weekend mornings so that he can run around, climb & basically work on strengthening his ankles. She will evaluate him again in 2 months. At that time, she thinks that he'll even be able to stop wearing them for some of his school days.
We had counts checked yesterday afternoon. Everything was good! His ANC was 5900 & everything looked great! Today, he saw the doc, had his spinal tap with chemo & is now getting the rest of his IV chemo. We've got about two hours to go. His spinal tap came back clear! Thank God!
We head home tomorrow. Our flight leaves at 9:25am, which means the shuttle picks us up at 7am....UGH! As long as Collin is feeling well, he will go back to school on Thursday.
On the subject of school.....things have been going very well. Collin continues to enjoy his classes & teachers. His grades so far have been very good....A's & B's. Things went well at school for his steroids last week as well. I sent snacks for the class on Thursday & Friday. (Grapes & cookies.) Unfortunately for Collin, devilled eggs don't go over well as a snack! Yes, his craving for the last week has been for PB&J and devilled eggs! I think I've gone through 2 or 3 dozen in the last week! But, it could be worse!
Our weekend was not the greatest.....our A/C quit on Friday. So badly, that it blew the fuses in the unit & burned up the breaker in the breaker box! Luckily, Jay got power back to it on Saturday & the A/C guy came & checked it out. Unfortunately, the compressor had shorted out & the unit was shot! We had to find a company that would come out & replace it on a Saturday! Thankfully, we did, but they needed some other tools to finish the job & had to come back on Sunday to finish. Collin & I headed down to Aunt Pam & Uncle Jack's house, while Jay sweated out the night at home. $2400 later....we have wonderfully cold A/C again & a MUCH lighter bank account. Ah, the joys of home-ownership!
Well, that's it for now. Please keep the folks affected by Katrina in your thoughts & prayers, as well as us! I'll drop you a note again next week....Collin has clinic on Wednesday. Be safe, have a good week & have a great Labor Day weekend!
Hugs & love~
Shanon
Tuesday, August 30, 2005 4:22 PM CDT
Good afternoon, everyone! First I want to say, I hope that those who were affected by Hurricane Katrina had minimal damage & that all of your loved ones are safe & sound. You have my prayers!
Well, we are in Memphis today. Collin & I arrived yesterday afternoon. He had a dental xray & dental exam. He also had a physical therapy evaluation. (Collin has been wearing leg braces for about 4 months now, due to peripheral neuropathy caused by one of his chemo meds.) The physical therapist is very happy with how his braces have helped. She now wants us to take the braces off & go to the park on the weekend mornings so that he can run around, climb & basically work on strengthening his ankles. She will evaluate him again in 2 months. At that time, she thinks that he'll even be able to stop wearing them for some of his school days.
We had counts checked yesterday afternoon. Everything was good! His ANC was 5900 & everything looked great! Today, he saw the doc, had his spinal tap with chemo & is now getting the rest of his IV chemo. We've got about two hours to go. His spinal tap came back clear! Thank God!
We head home tomorrow. Our flight leaves at 9:25am, which means the shuttle picks us up at 7am....UGH! As long as Collin is feeling well, he will go back to school on Thursday.
On the subject of school.....things have been going very well. Collin continues to enjoy his classes & teachers. His grades so far have been very good....A's & B's. Things went well at school for his steroids last week as well. I sent snacks for the class on Thursday & Friday. (Grapes & cookies.) Unfortunately for Collin, devilled eggs don't go over well as a snack! Yes, his craving for the last week has been for PB&J and devilled eggs! I think I've gone through 2 or 3 dozen in the last week! But, it could be worse!
Our weekend was not the greatest.....our A/C quit on Friday. So badly, that it blew the fuses in the unit & burned up the breaker in the breaker box! Luckily, Jay got power back to it on Saturday & the A/C guy came & checked it out. Unfortunately, the compressor had shorted out & the unit was shot! We had to find a company that would come out & replace it on a Saturday! Thankfully, we did, but they needed some other tools to finish the job & had to come back on Sunday to finish. Collin & I headed down to Aunt Pam & Uncle Jack's house, while Jay sweated out the night at home. $2400 later....we have wonderfully cold A/C again & a MUCH lighter bank account. Ah, the joys of home-ownership!
Well, that's it for now. Please keep the folks affected by Katrina in your thoughts & prayers, as well as us! I'll drop you a note again next week....Collin has clinic on Wednesday. Be safe, have a good week & have a great Labor Day weekend!
Hugs & love~
Shanon
Friday, August 19, 2005 9:17 PM CDT
Hello, Friends! I hope everyone is staying cool! It is miserably hot down here....but, it's the price we pay for pleasant winters. Oh well, such is life.
Anyway, Collin has been doing well this week. He got 80% on a math test the other day! School seems to be agreeing with him.
We had clinic on Wednesday....counts were decent, ANC was 891. The doc is a little concerned that he's not recovering as high as he usually does each week.....other than a couple of blips that can be attributed to virus's, his counts are usually above 1500 or better. Could be tired marrow, could be that he had a virus last week, could be that he is being exposed to new people/kids & his body is just working with that, who knows. He did have some more atypical lymphocytes, but only 11% this week. (Last week it was 20%.) But, thankfully, they are just what they seem to be, possibly left over from whatever he might have been fighting last week. All of his other counts were good....wbc 2.7, hct 34.4, hgb 11.7 & platelets were 274. So, overall, things are looking good. He also had 18% monocytes, so we might see a better recovery next week. Then, again, he got one of his heavier chemos this week, so he may still be down in the 800 range next week. I guess we'll just wait & see.
Our nurse practitioner, Angela, & our social worker, Melanie, came to Collin's class on Monday to talk to them about Collin. It went very well & I think it made Collin feel pretty good, too. Thanks, ladies!
We go back to clinic next Wednesday. It's that time again, STEROIDS! I'm hoping that since he is in school he will be well occupied by what's going on that the hunger & mood swings won't be too hard to manage during the day. I will be talking to the school nurse & his teacher to keep them aware of things.
Thanks for keeping up with us, as always.
Love,
Shanon
Friday, August 12, 2005 10:46 PM CDT
First of all, I want to thank all of you for all of the words of encouragement. I guess I was kind of depressed, but, I'm feeling much better now & thought I'd give an end-of-the week update to let you know what else has been going on....
First, I want to say that I have a great kid! I know that, but, I love to say it, too! They have been doing some testing at school to see where the kids are in reading & math, etc. Well, Collin scored in the 99th percentile on the reading test! Did I mention how awesome he is? LOL
We also had our first 'run' to Nurse Robin today....Collin had PE today & the kids were doing excercises & stuff. Then they were kicking around a soccer ball. When Coach turned around to see what the kids were up to, Collin was in the process of trying to get out of the way of the soccer ball. Unfortunately, it hit him in the face. He wasn't upset, but, Coach was worried so off to Nurse Robin he went. He was also looking a bit flushed, so it probably wasn't a bad idea. (Lord knows, it's been hotter than blazes & humid to boot!) Nurse Robin checked his temp, gave him some cold compresses, water & took very good care of him. Thanks, Robin!
And, for some more good news, tomorrow is our wedding anniversary. 11 years! Wow! I can't believe I've put up with Jay for this long! *Just kidding, Honey!* What's even wilder to me is that we've known eachother for 19 years! Jay is still my best friend & I wouldn't have it any other way.
So, our week has ended on a very good note & our weekend will be a good one. Jay & I are going out to dinner while Collin hangs out with Grandma Nurse.
I hope all of you have a good weekend. Thanks for being there for me, always.
Hugs~
Shanon
Thursday, August 11, 2005 8:28 AM CDT
Hello, all! I hope eveyone is doing well & enjoying what's left of summer. Everything is fine. I hope you don't mind but I feel a need to share some of the things I've been thinking about lately, so, if I ramble, please forgive me.
Fear.....it's something that we humans live with to a degree but don't often dwell on. As parents, we learn a new kind of fear when we are blessed with a child. But, again, most of the time, it's something we keep locked up in a closet way in the back of our minds & take a peek at once in awhile.
As the parent of a child fighting cancer, that thing in the closet comes out a lot more often & is a lot bigger than it was before cancer touched our lives. Whether it is by faith, hope, love, determination, sheer stubbornness, or a combination of these, we are able to shove that monster back into it's closet & keep it there for longer periods of time as we travel down our paths. But, just when we think the door will stay locked and things are going along very well, it's got to stick it's ugly head out and remind us that it's there. Fear Sucks!
Collin had clinic yesterday. As you know, his chemo was on hold because his counts were too low last week. He's been going to school, enjoying himself and doing well. We were waiting to get his counts, he & I were playing in the treatment room. I didn't see the doc in the hall, but went over to Collin's chart to see if the counts were ready yet. The first thing I saw was his white count, 5.7, which was a huge jump from 1.9 last week. All of the other counts were up as well, which is good. (Hct 33.5, Hgb 11.3, platelets 268 & his ANC is 855.) But, it was seeing that white count & not seeing the doc right away that had fear trying to get a grip on me. I should be used to the ups & downs of his counts. In my mind, I know that there are soooo many reasons for a jump like that, but it's hard sometimes to remember them. A moment later, the doc came down the hall (he had been in the lab looking at the slides of Collin's blood). Thankfully, he was smiling & my fear went back into the closet. You see, Collin also had 20% atypical lymphocytes (white cells, I think). The tech said they were not leukemia blasts, but the doc wanted to look to confirm this and he did. The cells had a lot of cytoplasm and he reminded me that we see this often with our kids. The thought is either his body was still recovering from the chemo in Memphis & just shooting out everything it had or he is fighting a virus. Which is entirely possible, since he's had some sinus drainage and mild coughing for the last few days. So, thankfully, the monster is locked back in his closet and Collin is back on track. He got his methotrexate yesterday (IV) and started oral 6MP last night. We go back to clinic next Wednesday for counts and one of his longer chemo meds.
Otherwise, things have been going well. I haven't been working quite as much as last week, thankfully, but I haven't been highly motivated to do much around the house right now either. Hopefully, as we work our way through these first few weeks of school, I'll get into a routine, but, for now, I'm just relaxing & catching up on some reading. In fact, I just finished the latest Harry Potter, yes, I am reading it like most of the population it seems. It was really good and I can't wait for the next one.
Well, if I sounded a little down, I apologize, but thanks for letting me get that out of my system. I can't tell you enough how much it means to me that I can share everything with all of you. It helps, a lot. Thanks!
Hugs & Blessings to all of you~
Shanon
Thursday, August 4, 2005 12:00 AM CDT
School is in & life is great!!! This one's kind of long, sorry, so I'll get right to it.....
Best news first.........ALL of Collin's tests (spinal, bone marrow & MRD) are negative! There is no sign of leukemia & he continues to be in remission! Thank, God! And, thanks to all of you who have kept our family in your thoughts & prayers.....they do work!
Otherwise, everything went pretty well in Memphis. Collin only had one episode of vomitting & even that was very mild. He also had a neuropsychological evaluation. Overall, as most of us know, he is a very smart child & has some attention issues. (Could be chemo related, could be natural....can't be sure right now.) They also recommended that he see a child psychologist to help him ease his worries & anxieties about his physical image, desire to do everything right the first time he tries & his transition back to school. I've spoken with his insurance company & they need to do their own behavioral evaluation, but, it shouldn't be a problem to get him hooked up with someone very soon.
We had clinic yesterday, and, surprise, surprise, he is neutropenic. This means that his counts are low & that he could have a hard time if he were to get a cold or infection right now. It also means that we will hold his chemo until next week & hope the counts come back up. His ANC was 209, hasn't been that low in about 4 months! (WBC 1.9, Hct 27.6, Hgb 9 & Platelets 188.)
We also went to the Open House at his new school yesterday. He will be attending Eustis Heights Elementary this year. I have met with the principal, his teacher & the school nurse (all very nice, caring ladies) & truly feel comfortable that they will all do everything possible to care for him, educate him & make him feel like just another kid. We have everything in place to allow for our clinic days, Memphis trips and emergencies.
I dropped him off this morning & right now am watching the clock until I can go get him. I could hardly sleep last night for fear/anxiety of him returning to a classroom setting after not attending for a year. I know he will do well & I know everyone will look after him. It's just another change in our life, returning some normalcy, but it's been him & I so much of the time that I think I'm the one having separation anxiety. I figure I'll be ok after the first week or so. (I hope! LOL!)
I have been working (more than I like, but am working on that). This past weekend was a nightmare! I had to work the closing shift Friday, Saturday, Sunday & Monday! The worst of it was that it was the end of the statewide Tax Free week & EVERYONE was school shopping! More than once, I had a line of 4 or more people outside of the fitting room. On top of that, yes, it got worse, on Friday & Saturday we had one person call out, not a big deal. Sunday, on the other hand, we had 2 people call out & one that was a no call/no show! Just to give you an idea, our store is divided into softlines (clothing & apparel) & hardlines (everything else). The team members are assigned according to depts under those areas. I am considered softlines when I work the fitting room. On Sunday, I was the ONLY one on softlines & we only had 4 on hardlines! The lead on duty was taking all of the jewelry calls but there was no one else to put the stuff from the fitting room back onto the salesfloor! I was sooooo glad when I clocked out on Monday (which was a more normal day) that I wouldn't have to go back until Friday! Oh well, what can you do!
Some other happy news.....Collin is getting another cousin! My sis-in-law, Susan, and her hubby, TJ, are expecting baby number 2 in March of next year. That will give her one child going through the terrible twos & an infant at the same time! Good luck, Susan! Congrats, Sis! We love all of you!
So, that's it for this week so far. Collin will go to clinic again next Wednesday & we hope to have a higher ANC & be able to get him back on track with his chemo.
Thank you, all, as always for checking on us & praying for us! It means so much to me.
Love,
Shanon
Friday, July 22, 2005 9:30 AM CDT
Good Morning! Well, it's been a hot week down here in Florida! It's only 10:30 am & already it feels like you could wring the moisture out of the air! UGH!
It's been a pretty good week. On Sunday, Jay, Collin & I went to the home of one of his TNT cycling buddies for a cookout. It was nice to meet some of the people who trained & raised funds for The Leukemia & Lymphoma Society. Everyone was very nice.
Collin has been feeling good & my mom's been feeling pretty good, too. She has not gotten results from the test she had done last Friday yet, but, the doc did tell her that she has peripheral neuropathy......duh! We already knew that! Seriously though, she hasn't had a lot of pain or numbness lately & hopefully the doc will have some new ideas to treat the neuropathy when she sees him next month.
Collin had clinic on Wednesday. His counts were down a little more, not a big surprise since he got one of the heavier rounds of chemo last week. (ANC 1280, WBC 3.8, Hct 27.9, Hgb 9.7 & platelets 120.) He got his chemo, vinblastine, and started his steroids on Wednesday. (Have pity on my mom & Jay this week.....not only do we have the 'Moody Munching Monster' but they get to deal with 'Moody Mommy' too! LOL)
We will be going to an ice skating/Christmas in July party on Sunday, sponsored by The Osceola Riders (a motorcycle club) & Lennar Builders for BASE Camp kids & families. Santa & Mrs. Claus will arrive at 1 pm, on a motorcycle, to give the kids presents. The kids will get lunch, go ice skating & throw snow balls. It is a very good time!
On Monday, Collin & I will be heading to Memphis for our monthly trip. This time he'll get his chemo, as well as, a bone marrow biopsy & MRD testing to confirm his remission. He will also have a neuropsychological evaluation to assess his abilities & to look for any learning issues he may have.
While he's doing that, I will be donating platelets. I'm glad to do this, because so often the chemo can wipe the kids out & they often need multiple transfusions of whole blood or platelets. If you're able to, please, consider taking the time to go to your local blood bank to donate blood or platelets. There is always a need & it's costs you nothing but time.
Please, as always, keep Collin & I in your thoughts & prayers for a safe trip & negative test results. I'll update next week!
Stay cool & have a great weekend! We love you!
Shanon
Friday, July 15, 2005 10:00 AM CDT
Good morning! I hope you've all had a good week! We've been doing pretty well, so I'll get right to it!
Saturday was a Mommy & Collin day.....we ran some errands, spent his birthday money & went to church. After church, they had a potluck with a viewing of the newest VeggieTales movie, Minnesota Cuke, so we stuck around & had a nice time. On our way home, we stopped by Sonic for slushees. It was a very nice day!
Sunday afternoon, I had to work, so Collin & Grandma hung out together. Thanks, mom!
Monday, Collin, grandma & I, along with our dogs (my 2 & mom's newest little guy, Fritz), loaded into my car & headed down to Aunt Pam & Uncle Jack's house. I just love hanging out down there. They have a big house, 4 dogs, 2 cats, a big yard & a swimming pool. I think we all enjoy going down, hanging out & just being together. It's also nice that they live near the airport for our frequent trips to Memphis. Or, as the case was Monday, Jay was returning from Portland.
Yep, he did it! Jay & his dad, Dennis, rode a total of 206 miles last weekend.....on bicycles! Once again, I'd like to thank everyone that helped make it possible for Jay to fund raise almost $4000 for the Leukemia/Lymphoma Society. Jay had a great time, got to visit with his parents (who live in Cleveland), met a lot of new people & came home with a sore butt & a smile on his face! Way to go, honey!
Tuesday was an eventful day.......Collin had several episodes of diarrhea! I called the clinic to tell them & the nurse said to keep him hydrated, watch for fever or cramping and to let them know if either of those things started up. I was very worried that we might be dealing with rotavirus again! UGH! Little did I know, but learned a little later in the day, my son had drank 4 or 5 juice boxes of apple juice within a very short time first thing that morning! Not fun for him, but a relief for me! Thankfully, it eased up later in the day & resolved by the next morning. Whew!
Jay called me when he got off of work Tuesday evening with some great news.....he was made 'official' at UPS! He is now a full-time driver! YEAH! I'm so happy for him! What he expected might take 2 to 3 years when he first started there, took only a year and a half! That means no more Saturday driving (unless he wants to), no possibility that they will pull him in at 3 am to work the pre-load instead of driving & no longer a need for the second job that he had on those days! It also means that if the runs are light & they don't need him to work on a given day, he will still get paid. He also said that when he came out of the building to call me on the way to his car, he could see a full, vibrant rainbow! Many of you know that I think rainbows are pretty special & have loved them for as long as I can remember. He was in awe of it! Congrats, honey!
Wednesday was clinic day & Collin's ANC was good, 1960. Overall, his individual counts were a little on the low side, but that could be the chemo hitting him a little harder than usual or the viruses he's dealt with this month......specifically, the rotavirus and a flare up of his herpes. (WBC 2.8, hct 30.2, hgb 10.4 & platelets 78.) He's been feeling good & has lots of segs & bands, so I expect the numbers may be higher next week. Then, again, they may not be since he got a heavier chemo round (VM26 & Ara-C) this week, so who knows. We'll just keep rolling along!
We also got to see some friends we haven't seen in awhile......Callie, who is a little over a year OT, her mom, Kim, her Aunt Page & cousin Cameron. I was very glad to see them. Especially since I haven't seen or talked with Kim since her mom died on July 2nd. It was expected & it was peaceful, but Betty will truly be missed. She was always very sweet to Collin & I. As always, you have my thoughts, prayers & love for you & your family, Kim.
Thursday, it was back home & back to work for me! It was a very busy night & my feet were killing me! I'm off today & work again Saturday & Monday. We'll also be going to a get together for Jay's TNT group on Sunday & I'll get to meet a lot of the people he trained with. We're all looking forward to it!
My mom is having an EMG on her feet right now, to try to discover the exact nature of the numbness & pain in her feet. Please keep her in your thoughts that all goes well & the doctor finds some way to treat this problem for her. (For those who don't know, my mom has a lot of medical issues of her own, lupus, fibromyalgia & associated conditions.) She's tough lady who helps me out a lot & tries not to let her difficulties get her down. You're the best, mom!
Talk to you again soon! Have a great weekend & enjoy all of your blessings!
Love & Hugs~
Shanon
Thursday, July 7, 2005 9:56 PM CDT
Hi, everyone! Hope you all had a wonderful & safe 4th! We had a wonderful weekend.....Thank you, Aunt Pam & Uncle Jack for once again letting us 'hang out' at your place! We had a great time!
On Friday, the Birthday, Daddy & I gave Collin a new bike before Daddy left for work. Collin really likes it & hopes to try it out soon. (We had to get a bigger one that would still take training wheels.....hasn't quite had the time/energy to master 2-wheeling it, yet.) Later on, I took Collin to Walmart for his birthday photo session. Maybe it's just me, but, all of the sudden, he doesn't look so much like a little boy any more, but working toward young man status. It's too fast! LOL
Saturday, we started out the day by letting Collin open the rest of his presents before Daddy went to work. Then, we loaded up the car, Grandma & the dogs to head down to Aunt Pam & Uncle Jack's house. Brenda & John (Aunt Pam's brother & his wife) were already there & hanging out by the pool. So, we did the same! Mr. Perry (Aunt Pam's dad) showed up a little later, too. Daddy showed up a little later & we had dinner, (wonderful ribs courtesy of John & Brenda), birthday cake & more presents! A great time was had by all & we just really enjoyed being together, celebrating & relaxing.
Sunday & Monday were more of the same....just hanging out together & swimming & playing with presents. Meanwhile, Grandma & Aunt Pam went to their rental house to lay a new floor & do some painting. (I think I had the better deal!) We've been blessed with some good weather & didn't have to worry about rain, too much.
Tuesday afternoon Collin had clinic. Everything went well & he got his chemo. Counts were good, too. (ANC 2584 - WBC 3.8, Hct 33.8, Hgb 11.5 & Pltlts 176.) While we were there, Terri Jones from BASE Camp came equipped with birthday cake, cupcakes, snack bags of chips & balloons to celebrate Collin's birthday. Thanks, Terri! The clinic gave Collin a few presents, too!
Wednesday, still in Orlando at Aunt Pam & Uncle Jack's place, more hanging around the pool & playing a new card game, SkipBO. A lot of fun, but, a long game.
Daddy came back down to spend the night before he had to fly out very early this morning. He's off to Seattle WA for the Team In Training Seattle to Portland Ride. Tonight, they are going over all of the info that they need & tomorrow, I think, the team might do a warm up ride. Saturday morning they set off to ride their bicycles, yes, bicycles, the first 100 miles toward Portland OR. Then, the team will bed down in a church who will be offering dinner & shower facilities. Sunday, they rise bright & early to do the final leg of 100 miles to Portland. They will have a victory party & stay at a local hotel. Jay will fly back Monday night & return to work (very tired) on Tuesday morning. The bonus for Jay (in addition to raising almost $4000 for the Leukemia & Lymphoma Society) is that his father is participating & his mother is going along for moral support. (Personally, I'm with Mom!)
So, we are back at home tonight & Collin is all tucked in. I'll have to wake him up shortly for one of his meds, but, he does really well.
We go back to Aunt Pam's on Monday. Collin & I to just hang out & my mom to help finish up work at the rental house. Wednesday morning, we will go to clinic for Collin's weekly counts & his long chemo (VM26). We should be done by 1 or 2.
Thanks to all who have sent gifts and/or well wishes for Collin's birthday! He loved everything! And, thank you, Lord, for a weekend with family & love & fun!
Have a great week!
Hugs & Love to all of you~
Shanon.....one lucky & proud mommma!
Wednesday, June 29, 2005 9:36 PM CDT
Hi, everyone! I hope you're all having a good week. Today was Collin's clinic/outpatient day. Everything went VERY smoothly! I admit that he & I were both a little nervous/anxious. We normally have his spinal & heavy chemo while we're in Memphis, but, due to the virus & fever that he had last week, it was rescheduled to be performed at by our oncologist in Orlando. I have total faith in his abilities, but, we've been spoiled by our trips to Memphis.
Anyway, his procedure was scheduled for 9am, which meant that we had to be at the hospital by 7. Which meant that I had to get up at 5am, UGH, and wake Collin up, double UGH, to be on the road by 6am. We made it in time, with minimal fuss on both of our parts. Got him all checked in & settled into a bed. At 8:30, we had to take a quick run up to our clinic to have his counts checked before they could perform the procedure. Counts came back good, ANC 2852. (WBC 4.6, Hgb 13, Hct 37.9 & Plates 310.) So, back down to pre-op. A few minutes later, a nurse & the anesthesiologist (sp?) came to wheel him away. Which really sucked! (Sorry!) He's used to me being in the room until he's under the anesthesia, but, I wasn't allowed to go back & it upset him. I can only hope that he calmed down pretty quickly once I was out of sight.
A little while later, Dr. Hajjar walked by & gave me the 'thumbs up' that all went well & I was called back to recovery. Lucky for me, I walked in to see a smiling, but tired, little guy. They wheeled him over to KidStop, our out-patient clinic & got him all set for his chemo.
His chemo went AMAZINGLY well! I stress this because every time he's gotten the same drugs in Memphis he has a bad round or two of vomiting at some point. NOT TODAY! Thank you, God! I think, and this is just my opinion, that what made the difference was they gave him Zofran when he got his spinal done & 3 hours later, right before his chemo started, he was given Benadryl. They kept alternating the drugs every 3 hours. He usually just gets Zofran for nausea & then later on they will give him Benadryl after the first round of vomiting. When we go to Memphis next month, I'll talk to our doc or nurse practitioner about using the same approach.
All in all, it was a long but smooth day. Collin is feeling pretty well & ate quite a bit tonight. He does still have some redness in his right ear, but, we'll see how it looks next week. It's hard to tell if he's at the end of the infection or trying to flare up again.
Thank you all for the birthday wishes in the guestbook. Collin loves them!
I'll update next week! Until then.....Happy Independence Day! Enjoy & stay safe!
Love,
Shanon
Wednesday, June 22, 2005 5:44 PM CDT
Hi! Well, it's definitely been an eventful couple of days.......
On Sunday, the day before we left for Memphis, Collin was nauseous & vomitted a few times, but did eat some. Overall, he was kind of punky & moody, but I thought that it was mostly his steroids.
Monday morning, he started with, shall we say, explosive, diarrhea. We made it to Memphis & had his counts checked that evening. Counts were good (ANC 7600, WBC 9.3, Hgb 12.4 & Plts 300). He was still having diarrhea & we ended up awake more than asleep Monday night, but it seemed to have tapered off by Tuesday AM.
We went over for clinic & the doc wanted to wait a day to do his procedures to let the virus work it's way out of his system & to get a sample. She also noted that his right ear was badly inflamed, but didn't want to put him on antibiotics & make the diarrhea worse. We took it easy for the rest of the day & got a sample over to the clinic in the afternoon. (Oh, joy!) THEN.....he spikes a fever last night! Not a high one, but enough that we had to go over & get a boost of antibiotics anyway.
So, last night, Collin slept really well with only one more round of diarrhea, but even that was getting better. We went over this AM to get counts again, still good, and to go ahead with his procedures.......well, just when we thought we were all set, the lab calls to let our nurse practitioner know that he tested positive for rotovirus. I need to do some research, but, I do know that it is highly contagious & he can't be anywhere near the other kids here. So, everything is scrapped for the week & he will get his spinal & chemo at home next week. We had to move out of our regular room at the Grizzlies House & into an 'isolation' room with an exterior exit/entrance. It's actually more like a suite & quite nice. As long as there are no more fevers, we are all set to head home tomorrow evening.
All in all, Collin is feeling very good & has a very good attitude. Tummy is tender, so he's taking it slow with the eating, but, I really think he's at the tail end of the virus.
Thanks, as always, for the good thoughts & prayers that continue to come our way. I'll update next week!
Hugs & much love~
Shanon
Friday, June 17, 2005 9:29 AM CDT
Hey, everybody! I'm sorry that it's been so long since I've updated, but, it has been a busy couple of weeks. I'll try to cram it all in here for you!
Collin had a great time at Camp Boggy Creek! He fished, created crafts, did archery (his favorite activity at camp), rode horses & did a whole bunch of other stuff! He was very tired & tan when I picked him up 2 weeks ago. He did have a little sniffle, drainage, but overall he felt good. He said the nurses were very nice & listened to his directions regarding his dressing changes. (He was a little worried that they wouldn't know how to do it!) He had labs drawn while he was there. His counts were good & he received his chemo. (ANC 2100, WBC 3.3, Hct 29.5, Hgb 10.3 & Plts 208)
We spent the next week at Aunt Pam & Uncle Jack's house. They went out of town, so we were house/dog/cat-sitting. We got quite a bit of rain but still had a nice week & got in some water playing, too. His clinic visit that week went just fine. Counts were good, still had the sniffle/drainage & some redness in his left ear, but no infection, so he got his long chemo (VM26 & Ara-C). No problems. (ANC 1700, WBC 3.4, Hct 36, Hgb 11.8 & Plts 248.)
This past week has been pretty good. I've had to work a couple of days & Collin still has the sniffle, but it's getting a little better. We had clinic on Wednesday. His counts are up a little bit. (ANC 3456, WBC 5.4, Hct 32.7, Hgb 11.2 & Plts 296.) The nurse practitioner said that although his left ear has some fluid in it, it is clear & she doesn't want to treat it at this time. We'll have the doc in Memphis take a look next week & see what she wants to do about it, if anything. He got his chemo, vincristine, & started on the steroids. Not too bad, so far, a little moody, but it's been ok.
The next few weeks promise to be just as busy for us. Sunday, of course, is Father's Day. On Monday, we're off to Memphis. We return late Wednesday night. We'll have clinic the following week, which will also be Daddy's 35th birthday! A few days later, July 1st, will be Collin's 9th birthday! I can't believe our boy will be 9! It seems like just yesterday he was learning to walk!
Well, that's pretty much the scoop! I hope you are all having a nice summer so far! Please keep up the prayers & good thoughts! I'll update next week!
Hugs~
Shanon
Sunday, May 29, 2005 8:20 PM CDT
Happy Memorial Day! This one will be long, but, read on & you will understand.....
We went to Memphis this week & everything went very well! Counts were good, ANC 5700. Collin got his spinal & all of his chemo on Tuesday. His spinal fluid came back negative! We returned to Florida on Wednesday night & got back to our house on Thursday. Now, it was time to start packing Collin for his week at Camp Boggy Creek.
I was sitting in the kitchen Friday night with all of his clothes laid out in front of me, thinking about how he missed out on camp last year and how this was what I should have been doing a year ago.....labeling his clothes & packing him up for camp. Instead, we were sitting in the doctor's office learning that he had relapsed and that our world was about to change AGAIN. I was basically having a pity party for myself.
Anyway, I was still feeling a little blue yesterday. And, even though I was going to be 'free' for the week, I was starting to feel a little sad about Collin going to camp. Jay was very good to me, taking me out to dinner & stopping for dessert & shopping on the way home. My friend, Kim, helped me remember all of the good things about this last year & I guess it just sank in tonight. So, here's how I'm feeling now:
I'm still angry/sad sometimes that Collin & our family is still fighting this fight, but I'm also very glad that we are able to continue fighting. (I hope that made sense!) I'm grateful to God for giving us Collin & each other as well as our family & friends. I'm grateful to our doctor who found the relapse & suggested/referred us to St. Jude. I'm grateful to ALL of the wonderful staff at St. Jude for doing what they do & caring so much. I'm grateful to all of the people who donate to St. Jude and The Leukemia & Lymphoma Society, and other cancer charities, so that our family may benefit from the research funded by them.
In general, I'm feeling very blessed and very lucky to have the support we have & the opportunities that we've been given. Thank you all, our family, friends & online support, for all that you've done for us. I love you all so much more than I'll ever be able to put into words. Just know that I appreciate you very much & that you all have made a difference in our lives.
And, thank you, Boggy Creek, for giving me a week off & giving Collin a week to remember!
Have a blessed week, everyone!
Shanon
Saturday, May 21, 2005 0:39 AM CDT
Hello, everyone! I hope you've all had a good week. Things have been good down here.......
Last Saturday evening we went to church, first time since Christmas.....hoping to make it more of a habit. Then went out to dinner. We had a really nice evening.
Collin had clinic on Wednesday.....counts were good: ANC was 1900, wbc 3.3, hct 30.8, hgb 10.7 & platelets 241. So, he got his chemo & started his steroids. He hasn't been too bad this time, but, very moody & clingy. Always wants to be with me. We are all set to go to Memphis on Monday, with spinal tap & chemo on Tuesday. We'll return on Wednesday, so I'll try to update that night or the next day.
I'm kind of dragged tonight, so I'll leave off here. Please keep us in your thoughts and prayers for negative test results & a safe trip. Have a great weekend!
Love & Hugs~
Shanon
Saturday, May 14, 2005 0:53 AM CDT
Hi, everyone! Sorry that it's been awhile, but, things have been busy around here....as usual. I'll try to keep it short! (Hah!)
Collin's counts have been good the last two weeks....ANC was 1938 on 5/4 and 756 on 5/11. His other counts were also good this week....hct 32.4, hgb 11, platelets 259 & wbc 2.1. He got his chemo as scheduled on Wednesday & didn't have any problems. The doc also diagnosed him with Fifth Disease, sounds awful, but it's not. Here's what WebMD says: "Fifth disease is a contagious viral illness that is much more common in children than adults. It is also known as "slapped cheek disease" because of the distinctive rash some people develop." Collin definitely has the slapped cheek thing going on, but, doesn't seem to have any other adverse effects. We'll go to clinic next Wednesday. If everything is ok, he'll get vinblastine & start on his steroids. Pray for me! LOL
We had a great, but busy, Mother's day weekend. My aunt was in town from Ohio, my mom's sis. My grandmother left on Sunday to move to Eugene, Oregon to live with her son, Uncle Rich. She was pretty freaked out after all of the hurricaines last year and, I think, it's hard for her to live alone since Grandpa died last year. Unfortunately, I just have too much going on to be of much help to her & my mother has her own medical issues, too. We will miss her very much. I hope she finds new friends & happiness out there in the wildes of Oregon. Talk to you soon, Gram! We love you!
Uncle Jack had his heart catheterzation (SP?) on Monday of this week....all went well. The doc placed a stint in the large vein that was blocked & is adamant that he lose some weight. Guess that means no more Klondikes, Uncle Jack!
Collin has been accepted to attend a week long session at Boggy Creek Camp starting on the 28th of this month. He is really looking forward to it since he missed out last year. We'll have to rearrange his chemo maybe, unless the doc at Boggy can administer it, but we'll find a way to work it out. Something I'll have to check out with our docs this week.
Jay has been working hard at UPS & trying to get his training in for The Leukemia Lymphoma Society Team In Training Ride that he is hoping to attend in July. This time he's training to ride 200 miles in 2 daysm from Seattle WA to Portland OR.....on a bike!!! His fundraising is getting very close....he needs about $500 more to hit his goal of $4000 to attend and has about a week left to do it. If you're interested in supporting Jay & the Society, please click the link below to donate securely on-line. If you'd rather snail mail a donation, email me at smburke1001@cs.com and I will give you our home address to mail a check. Please tell anyone you know who might be interested in helping out. The Society puts approximately 73 f the funds raised back into research & family support.
Have a great weekend! I'll talk to you again next week!
Love & Hugs~
Shanon
Monday, May 2, 2005 9:14 PM CDT
Hello, everyone! It's been a good week, it's been a rough weekend. I'll start with last week.....
Everything went very well in Memphis! Collin got evaluated by physical therapy on Monday. She was very happy with how well the stretches have gone. We did see some improvement, but will continue to do the stretching along with wearing leg braces. The braces are plastic, come up from under his foot to the back of his ankle/leg and stop at the top of his calf. They were made from casts of his legs so they are custom-made just for him. He's worn them a few times now & has done well with them. We will work up to him wearing them all day every day.
On Tuesday, we saw Dr. Hijiya, his oncologist & everything went pretty well. He did have swelling in his testicles, so she sent him for an ultrasound. Everything is fine. Possibly attributed to the steroids he was on the week before. His ANC was in the 3000s, so he was all sent for his spinal tap, which went well & came back clear! Thank God!
Returned to Orlando on Wednesday evening and spent Wednesday & Thursday at Aunt Pam & Uncle Jack's house....thanks for always letting us crash & wind down with you guys & your puppies! We love you!
Friday night, it was back to work for me. I have to admit, I'm not real content at my job lately. I don't know if it's just a phase or if it's time to find something else. I'll sort it out, I'm sure.
Saturday was very nice....Collin, Jay & I went out to dinner & went bowling. Collin was having a blast! They had music on & he was be-bopping around & enjoying the heck out of himself!
Sunday I received some very sad news....one of our wonderful nurse practitioners from our Orlando docs office died last Friday night. She had been battling some form of colon cancer & was being treated at Sloan-Kettering in New York. Marjan was a very sweet, very dedicated woman who loved the kids she treated & did everything possible to care for them. She was there when Collin finished his treatment in 2003 & she was there when we found out about the relapse last year. She was a part of our family. Marjan, we love you & will miss you.
I had to work last night, so I waited until today to tell Collin. He handled it very well, but admitted that he is very sad. I'm sure the questions will come whenever I least expect it, but he needs to process it in his own time & his own way.
My dad had shoulder surgery today & came through very well. Please pray for him to have a speedy recovery.
Uncle Jack will be having heart catheterization tomorrow morning. Please pray for him to have a smooth procedure & strength for Aunt Pam.
We have clinic on Wednesday morning, so I'll try to update again later this week.
Thank you for reading this far! Have a great week!
We love you!
Shanon
Thursday, April 21, 2005 7:16 PM CDT
Hello, friends & family! First, let me say.....WE DID IT! We all went parasailing! It was an amazing feeling! Collin was very upset when we first lifted off of the back of the boat, but, once we were in the air & he opened his eyes, he was in awe! Jay & I would have had a great time if it had been just the two of us, but, because Collin went up, too, it was perfect! When we were coming back down to the boat, about 50 feet or so away from it, Collin said, "Maybe they'll let me go back up"!
We've had a busy week so far & continues to be busy. Our friend, Tom, came in from Ohio on Saturday. It's been really nice to see him & get reacquainted. Of course, he's been spoiling Collin....two trips to Toys R Us so far! We went parasailing on Sunday & spent the night at a gorgeous hotel in Indian Rocks Beach. My mom, Jay, Collin, Tom, Aunt Pam, Uncle Jack, Brenda & I all had a great time. It was good to be together with family & friends.
Collin did finish up his steroids Sunday night, but, I still feel like a short-order cook/waitress. The boy has eaten so much speghetti, garlic toast & strawberries, that I'm surprised he's not Italian!
Collin had clinic yesterday. His ANC was 9555.....thanks to the steroids! His other counts were good as well, platelets were 296, Hgb/Hct 11.5/33.2. His chemo did get to the clinic on Tuesday, thank you, St. Jude. So, he got VM26 & ARA-C and now we're all set to head to Memphis on Sunday. Collin did spike a fever last night 100.9 and tonight 100.1, but, they started to go back down within the hour & he's feeling very well, so we're pretty sure that they were ARA-C induced.
I'll update while we're in Memphis or when we get back on Wednesday night. I hope you all are doing well & having a great week!
Check out the picture album page, there's a pic of us at Boggy Creek with our friends Kim & Callie!
Hugs & much love~
Shanon
Thursday, April 14, 2005 11:29 PM CDT
Hello! I hope everyone is having a good week! Well, once again it's been a busy, but pleasant, week & looks to be a great weekend as well. Here we go....
As you know, I worked all weekend & survived the teenagers! It was a boy's weekend for Collin & Jay. On Friday night, they went putt-putting. On Saturday, they went to the county fair. (No, there was not a petting zoo exhibit this year!) They had a really good time!
Collin, Jay & I went over to Aunt Pam & Uncle Jack's house on Tuesday to hang out and visit with them and Uncle Jack's big brother, Bud, who is visiting from Ohio. (Brief history, Uncle Jack & Uncle Bud are my great uncles, and I mean that literally as well. Their brother, Bob, is my grandfather.) We had a nice visit & went out to dinner together, then spent the night.
Jay headed off to work Wednesday morning while Collin & I headed to clinic. His counts were ok, ANC was 650. (WBC 2.5, Hgb 11.3, Hct 33.9 & Plts 179.) But, one problem, one of his chemo meds is on backorder! He was scheduled to get VM26 & Ara-C; the VM26 is on backorder. So, after consulting with our wonderful nurse practitioner, Emily, in Memphis, it was decided that we would switch this chemo to next week & go ahead with Vincristine this week. Which also means....da, da, da, dum...he gets steroids this week! Hopefully, the VM26 will come in & St. Jude will be able to send it down for clinic next week. If it doesn't, we'll see.
I worked tonight, not so many teens, now it's the moms!! :) And, I work tomorrow night, too. On Saturday, an old friend of our family's is coming in from Cleveland for a visit. We're all going to hang out Aunt Pam & Uncle Jack's (our home away from home) this weekend and go parasailing! I can't wait! Collin swears he's going to do it, too. I'll believe it when I see him up in the air! (Of course, I'll be holding my breath until he's back in the boat, but, I think he'll have a blast if he tries it!)
We're scheduled to return to clinic next Wednesday morning. If I don't get a chance to do it before then, I'll post after we get home.
Please keep the following people in your prayers:
Katie Rose & family ~ has leukemia & other medical conditions in addition to it, is having problems right now.
Cameron & family ~ just found out he has relapsed one year after his bone marrow transplant.
Brenda & family ~ I've mentioned her before. Her mother passed away this past Sunday and they are having the memorial tomorrow. We love you, Brenda!
And, so many others I can't begin to mention....please.
Thank you all for always being here for me & our family. I can't tell you how full my heart feels every time I think of all of the people (friends, family & strangers) who pray for us & keep Collin in their thoughts. You all mean so much to me.
Love~
Shanon
Sunday, April 10, 2005 10:38 PM CDT
Good evening, everyone! I hope all is well & that you've all adjusted to the time change.....I'm almost used to it!
We had an AWESOME time at Camp Boggy Creek last weekend! Our clinic friends, Kim & Callie, were there & we all had a blast! Collin really took to his 'family pal', Danielle & taught her how to do archery first thing Saturday morning. Collin really opens up at Boggy....he's more relaxed & more willing to do things. There was a dance on Saturday night, 70s theme....I feel old. Collin was dancing for the first 15 minutes or so! He never dances! We also did some projects in the wood shop & just had a great time in general! After the dance, Collin & Danielle headed back to our cabin for 'Kids night in', while the parents hung out at the dining hall for a relaxing late night snack and rocking chairs around a fireplace. When Jay & I returned to our cabin, not only was Collin still awake at 11:15pm, but he had not one, not two, but THREE female counselors keeping him company! I love to tease him! He's such a little flirt and doesn't even realize it! We all returned home last Sunday afternoon, exhausted, relaxed & happy! I'm going to start lobbying Boggy Creek to do a week long Parent's Summer Camp! That would be great!
Collin had clinic last Wednesday morning. Counts were good, ANC was 775. He got IV methotrexate and started on his nightly dose of 6MP. Unfortunately, one of Collin's favorite people, Miss Hema (our lab tech), is leaving the clinc. Time for her to move on. Collin & I will miss her tremendously. Before all of the HIPPA regulations were in place, she would always let Collin come back to the lab, see how she prepared a slide, allow him to look at them & help her count the cells. He was very upset when HIPPA interfered. We love you, Hema!
He's been feeling very good & had a good visit with his teacher on Friday. 100% on his spelling test! We go back to clinic this Wednesday morning for his long chemo, VM26 & ARA-C. Should go smoothly, we hope.
I have worked every night for the last 4 days and am off again until Thursday. Not too bad, but, someone save me from teenage girls trying on every bathing suit in the store! (And not buying one!) I work in the fitting room & have to rehang them after they are done!
Jay is back to doing two jobs for a little while, UPS in the early am & Penninsula (loads semi trailers & picks up product) in the afternoon. Things have slowed down at UPS for the moment, so, if you have to ship anything in to Central Florida, use UPS!!! Just kidding, hopefully, things will pick up again soon. He's such a trooper! I love you, honey! Thanks for all the hard working that you do!
Well, I've gone on long enough. I hope you all have a great week & remember daily how lucky we are to have each other!
With much love & thanks~
Shanon
Friday, April 1, 2005 3:01 PM CST
Happy April Fool's Day! I promise I won't pull any pranks on you! Hope you've all had a great week....I know we have!
Collin & I have had a very busy week, but great! All of his test results came back negative! Thank God! We did meet with the physical therapist while we were there. Collin is very tight in his hamstrings & calves. He also has a little bit of peripheral neuropathy. (Don't have time right now, but you can look it up on WebMD.) So, we have excercises that he has to do twice a day to try to loosen him up. We will meet again when we go back. It looks like he will have to wear plastic leg braces, called AFO or ankle foot orthosis. How much will depend on how effective the stretching is. But, on the plus side, the neuorpathy should resolve itself once he's off treatment next year. So, just one more thing we have to accept and work with for now. We can handle it!
Yesterday, we had a great day with Aunt Pam. We went out to lunch & went putt-putting. I won, but Collin got 4 hole in ones! Thanks, Aunt Pam!
We go to Boggy Creek Camp for a weekend family retreat tonight, so, I'll update again next week!
Thank you all for the prayers and good thoughts.....keep them coming!
Please keep the following people in your prayers, if you will:
Donna & her two children: Her husband was killed last week in a freak accident on a subway track. Their daughter is currently on treatment for leukemia.
Chrissy: Her husband was hurt pretty badly while cutting tree branches last weekend.
Little Mark & family: Mark relapsed with neuroblastoma, had surgery last week to remove a tumor on his brain. He is doing well after the surgery but they have to fight this cancer again.
Brenda & family, a family friend, whose mother has alzheimer's & leukemia and is nearing her end.
As well as all of the children fighting diseases & their families.
Have a blessed weekend! Talk to you soon!
Love~
Shanon
Thursday, March 24, 2005 10:44 PM CST
Good evening, Happy Spring & an early Happy Easter blessing to all of you! It's been busy lately, but, I'll try to keep it short. Ha, ha!
Collin's counts were up this week, which might have been surprising, but, after the way his counts have been lately, I'm trying to just go with the flow. He was at 525 last Tuesday (WBC 2.5, Hct 35, Hgb 11.8, Plts 233) & he received ARA-C & VM26. He also had 27 onocytes so he was on his way up already. This week he was at 2100 (WBC 4.1, Hct 35.5, Hgb 11.7, Plts 207). Looks like he dropped and recovered nicely. So, he got Vinblastine & started Dexamethasone Tuesday afternoon. Yippee....steroids! Actually, so far it hasn't been too bad. He's eating strawberries like their going to stop growing & I've seen enough speghetti over these last two pulses to want to swear off Italian for awhile! The worst part is watching your 8 year-old son pace around the room because he can't figure out what he wants to do....he just can't focus some times, but, thankfully, it passes pretty quickly. His mood has been good and he's feeling good. Thank God!
I have been working about 3 days a week & will have my last pottery class on Saturday afternoon. I'm hoping to sign up for another round of classes but it is a bit cost prohibitive, so I'm going to talk to the owner of the store & see what we might work out. I really, really enjoy working with the clay. It's very relaxing & gives me a sense of accomplishment to have a finished plate, pot or bowl.
Jay has been working very hard driving for UPS. He's very happy but tired at the end of the day. He has been trying to get in his training rides for TNT, but this past weekend was tough for the whole team. While they were at a rest stop, one of the team members collapsed for no apparent reason. The paramedics had to shock him a few times and, sadly, he died later at the hospital. The funeral was held yesterday. He was 44 years old, in excellant health. He leaves behind two children, an ex-wife, parents and other family. Please say a prayer for them & for the teammates who are trying to understand and cope.
Collin & I go to Memphis on Monday. Tuesday will be a very busy day. He is scheduled for a physical therapy consult, lab work, clinic visit w/the doc or our nurse practitioner, then off to procedure for spinal tap w/chemo & a bone marrow aspiration. Then, after recovery, we're off to the medicine room for 6 hours of chemo. We fly out Wednesday morning to come home. This will be the first bone marrow test since Collin has started the maintenance phase of his treatment. I feel very good & have faith that all will go well, but, please, keep us in your thoughts & prayers for negative tests, smooth flights & a pleasant trip overall.
On Friday of next week, Collin, Jay & I will be going to The Boggy Creek Gang Camp for the weekend family retreat. We have done a few others & they are a lot of fun! We've been looking forward to it for weeks!
I'll try to update after we return from Memphis & before Boggy Creek. I hope you all have a great weekend with wonderful blessings to your families! I thank God for all of you everyday! You are a blessing in my life that I try not to take for granted.....thank you.
Love & Hugs~
Shanon
Friday, March 11, 2005 1:29 PM CST
Good afternoon! It has been a busy week, but, thankfully, things are winding down. This will be a bit long, but, here goes....
We returned from Memphis last Wednesday. I think I told you that his spinal was negative & his chemo went well, but his ANC dropped to zero the following week. So, no chemo last week. We met with the Ortho/AVN clinic before we left & Collin does not have AVN, nor any other damage to his bones due to steroids. Thank God! They will follow up again in 3 months to see how he's doing. So, the thinking now is that the pain he experiences is caused by the steroids and vincristine/vinblastine. We will be getting a physical therapy consult next trip to get advice on how to strengthen & stretch his leg muscles since the vincristine & vinblastine can cause problems. (Shortening in the muscles, I think. Need to do more research!)
I had pottery class on Saturday.....I love it! I also had to work Saturday night. Ugh, but, I do enjoy the people I work with. Jay didn't have a training ride on Sunday, so we all had a 'laze around the house' kind of day.
This week I have worked Monday & Thursday. Jay has been doing a lot more driving with UPS and looks like he will be doing even more for the forseeable future. They have a lot of drivers out on disability & are going to be adding at least one more route, so it looks like he's going to be 'full-time' at UPS. No more need right now for his 2nd job.
On Tuesday, Collin had clinic & was supposed to get his chemo that had been post-poned from last week. Well, imagine my surprise when his ANC was only 126! His other counts were good, but, what freaked me out what that his white count went from 1.0 last week to 6.0 this week! He did have 14% atypical lymphs, but they were not blasts, Thank God! You'd think I would know, after all that we've been through, that the chemo hits harder sometimes & sometimes the bone marrow has to work harder to recover. I felt like a newbie! After I talked with our NP & our nurse in Memphis, I felt much better. So, we went back today to try again. His counts are much better, ANC is 672, WBC 3.2,
Hct 35.2, Hgb 11.4 & Platelets 190. He was good to go for his chemo. This week it's an easier one, methotrexate, and nightly 6MP, which we'll shorten by two days to get back on track.
Tonight, I work & I'm feeling more relaxed in general today. Jay had dental surgery this morning & is doing well, but a bit puffy in the face & drowsy from the pain meds. My mom will keep an eye on my boys while I'm at work. Thanks, Mom, for all that you do for us! We love you! Mrs. Bob, the tutor, will be by this afternoon to meet with Collin. Tomorrow morning (7:30) Collin, Mom & I (maybe Jay, if he's up to it) are going to a Kid's Fishing Derby & Water Awareness Festival. Mom & Collin will hang out for all of the crafts, activities & whatnot, while I head over to my pottery class at 10. At some point, we will go over to my Grandma's to celebrate her birthday. She is 81, I think, today! Happy Birthday, Grammy!
Collin has clinic next Wednesday & I work Monday, Wednesday & Friday next week. The next two weekends promise to be busy ones, actually 3, but I'll go into that next week.
Thank you, as always, for all of the prayers that are said & the good thoughts that are sent our way. They are working! Have a blessed weekend!
Love,
Shanon
Tuesday, March 1, 2005 11:51 AM CST
BRRRR! It is cold up here today! I think the high is going to be 40! But, the sun is shining & all is going well, so we'll take whatever comes our way.
Collin had his MRI & Xrays yesterday. Everything went very well. For someone who was up at 6:15 am & didn't go to bed until 9 pm, he was full of it all day yesterday & again today. Lord, I just wish I could have 1/10 of his energy to keep up! But, I thank God that he's feeling good.
We went to clinic this morning and found out his ANC is 0! Which means the chemo is doing it's job. I was just surprised that it's that low. As long as there's no fever & he continues to feel good, we will be returning home tomorrow evening as planned.
On the lighter side, though Collin might argue with me, we were out on the playground this morning. He was playing with his LEGO motorcycles on the slides & having a blast because there was ice on the bottom of them & his toys would slide all over. It looked like it was solid ice & I suggested that if he were to slide down, his butt would skate right across the ice. He thought that would be neat & went for it. Unfortunately, the ice was not solid & broke the second he hit it! Oh, if you could have seen him! He was ticked! His butt was wet & cold & it was all my fault! Thankfully, by the time we got upstairs he was able to laugh about it. I told him I didn't force him to go down, but he made the choice. He said, "Next time, Mom, don't give me a choice like that!".
Have a great day & know that the prayers are being answered! Talk to you soon!
Love~
Shanon
Thursday, February 24, 2005 10:54 AM CST
Happy Thursday, everyone! Well, we are in Memphis & it's cold! We left 80 degrees in Florida & find ourselves in 45-50 degree weather. But, I can't complain, life is good & the sun is going to shine this weekend!
For those who have asked....my mother got out of the hospital last Friday & is doing well. She's a little weak, but, is now taking iron to help rebuild her blood. She will have follow-ups with her regular doc & the gastro doc to monitor her coumadin level & the polyps....which came back negative. Thanks to all who have prayed & sent good thoughts. They have been heard & helped.
Our flight was pleasant & direct on Tuesday. We got settled in to the Grizzlies House & went to the hospital for labwork & dinner. (Collin just finished steroids & has had food on the brain! Beware Grandpap & Grandma!) His counts were very good....ANC 3900, WBC 6.7, Hgb 10, Platelets 253. So, he was all set for his treatments on Wednesday. We saw the nurse practitioner at the clinic & then off to procedures. Everything went smoothly. After procedures, it was lunch time & Collin ate very well. Then we were off to the medicine room for 6 hours of chemo. All in all, yesterday went very well & we were settled in for the evening here at Grizzlies by 7pm, after dinner, of course. :)
The only mishap....Collin's stuffed animal was lost. We don't know how, but, I searched everywhere & she's not to be found. He was good about it & we replaced her with a new friend today.
Today, we met with the ENT about Collin's chronic sinusitis. We are going to treat it as it flares. Whenever his counts are going down, usually after one of his heavier chemos, I will put him back on the antibiotics until his counts come back up. We will have a follow-up with them next month to see how this works. And....drum roll, please.....the spinal tap came back negative! Thank God!
So, we are off for the rest of today & the weekend & looking forward to seeing a little more of Memphis when my in-laws arrive tomorrow. On Monday, at 6:45 AM, Collin is scheduled for his MRI, ugh, too early for me! On Tuesday, he gets his counts checked again & chemo. On Wednesday, we will meet with the Ortho/AVN clinic to find out about the MRI & then we head back home that evening.
I will update next week when we return from Memphis. I do have a laptop with me, generously donated to us by BASE Camp, so I can check email & keep up.
Thanks again to all of you for always being here for me. I can't tell you the strength that you give everyday & how much it means to me. I love you all! Have a great weekend!
Hugs & Blessings~
Shanon
Tuesday, February 15, 2005 11:07 PM CST
Happy Belated Valentine's Day, everyone! It's been a busy few weeks so this will be a little long....sorry. Hang in there, if you dare! :)
Collin has been doing well. His counts have been good & he's been getting his chemo. Today was clinic day. His ANC was 2500! His WBC was up to 4 today, but, I think that's due to his sinuses....yes, they are stuffy & draining, again. :( So, the doc said to put him back on Keflex & to call Memphis. I called our sweet NP up there & she's going to get us in to see the ENT again on our next trip. I have no idea what he might decide to do. It could be allergy-related....it's that time of year here. Pine pollen is up & that's one that he is mildly sensitive to. He also starts his 5-day pulse of dex (steroid) tonight, so, we'll see which child emerges. :)
Collin got his first progress report from his teacher last week.....A in reading/spelling & A in math. (Those are the skills they concentrate on.) We are all very proud of him! He really likes his teacher & looks forward to her visits....she's a great lady.
My mom recently went to Cleveland for a week & had a great time. She got to meet my nephew, Nicholas, for the first time & she just fell head over heels for him! He's definitely a cutie! She had a hellish time on her flights returning from Cleveland, but did make it home safe & sound, only to end up in the ER this past Sunday night. Long story, short version.....she had two bleeding ulcers & was low on blood volume because of them. She will be getting a colonoscopy in the morning to make sure there is no more bleeding & hopefully be returning home within the next two days.
I have recently returned to work at Target, part-time. I'm glad to be there & thankful for all of the patience & support that the wonderful people who work with me offer.
Collin & I are due to return to Memphis next Tuesday. This trip will be a little longer because they have him scheduled for his spinal w/chemo & IV chemo as well as the ENT appointment, and an MRI of his hips followed by a consult with the AVN/Ortho clinic. The MRI has been planned for awhile. It is just to take a closer look at his hips because of the occasional pain that he has experienced in the past few months. Mostly, while on or coming off of his steroid pulses. Regular, high dose steroid use can cause bone loss/death, so they want to be sure that there has not been any damage done. The concern is very low that there has been. This is mostly just to take a look & be sure. We will have some time on our hands during the week, but, Collin's wonderful grandparents (my in-laws) from Ohio are going to come down from Cleveland and spend the weekend with us in Memphis. We are both looking forward to seeing them. They are so good to us!
I think I've talked your ears off enough for now....please, keep Collin & my mom in your thoughts and prayers....smooth St. Jude visit for Collin & speedy exit from the hospital for mom.
Thanks for being here & making it to the end!
Hugs~
Shanon
Monday, January 24, 2005 10:50 PM CST
Hey, everyone! Hope you've all had a good week & a warm weekend! (It's a bit nippy down here.....43 right now! BRRRR!)
Anyhooo, Collin & I made our trip to Memphis last week & everything went well. His ANC was 500, which was lower than I expected, but good enough to go ahead with his spinal tap and chemo. The doc did reduce the chemo by 50since he was so low. We don't want him wiped out for his chemo this week. We also met with the ENT about his sinusitis while we were there. He does not advocate the surgery to 'scrape' the sinuses out....he says it doesn't work. That took a load off of my shoulders. He did tell me to start doing the Flonase nasal spray daily again and continue with the Zyrtec for allergies. He also prescribed Keflex (antibiotic) as a prophylactic and Singular (another sinus med). Hopefully, this will help us get his sinusitis under control. Our trip was cold, but otherwise very smooth and pleasant. The spinal tap came back negative! Thank God! And, thanks to all of you for your prayers & good thoughts!
The rest of the week was pretty good. Collin's tutor, Mrs. Bob, came Friday afternoon & things went very well. She was very impressed with his reading skills and his math. She also came again today. She does not forsee any problems at all with Collin finishing 2nd grade in May on track with his classmates. He seems to really like her & enjoys the time they spend together. They laugh alot and seem to have a good time while working together. She's really a nice lady.
On Saturday, I had a very busy day. I started a pottery wheel class that meets on Saturday mornings from 10-1 for 8 weeks. It was a lot of fun, but also a lot of work. My arms & shoulders were very tired! You have no idea how much strength is needed to knead a ball of clay & work it while on a spinning wheel. But, by the end of the class, I did have small bowl to show for my efforts. I can't wait for the next class.
I also started back to work at Target Saturday night. I worked from 4-11:30 in the fitting room. It was really nice to be back. Everyone was very nice & there were a lot of new faces as well as a new layout for the store. They had a remodel this summer while I was on leave. I'll only be working about 20 hours a week and only in the evening, but I think it will be good for me and for Collin, too. Thankfully, I have my mother & Jay to back me up with Collin whenever I do work.
Well, Collin goes to clinic tomorrow and we're meeting Aunt Pam for a late lunch. I hope you all have a good week & I'll update again later this week. Stay warm!
Love,
Shanon
Friday, January 14, 2005 9:44 PM CST
Hello! Just a quick update tonight....
Collin had clinic on Tuesday. His counts were good, ANC 1044, but, as I suspected, his hemoglobin was a bit low (7.4). KidStop, the out-patient clinic, was very busy, so we opted to wait until Wednesday to get his transfusion. Well, long story short....they were slammed & short-handed on Wednesday. They didn't have a bed for him until 7pm and his transfusion didn't get started until 10pm! We didn't get home until 3 am on Thursday. But, Collin is feeling good (in spite of having started on steroids Tuesday night) and his color is good. I'm just glad it got done.
We are scheduled to fly to Memphis on Monday, 17th, and get his labwork done that evening. On Tuesday, he has a psychology follow-up appointment at 9 am, clinic at 10 am, spinal tap at 11 am, ENT consult (for his sinusitis) at 1 pm and then 5 hours of chemo in the medicine room at 2pm. If all goes smoothly, we should return to Florida on Wednesday afternoon. Please pray or send good thoughts for clear lab tests and smooth flights for Collin & I.
I will update again when we get back. Take care, stay warm & have a great week!
Hugs~
Shanon
Monday, January 10, 2005 10:27 PM CST
Happy New Year to all! I am so sorry that it's been so long since an update. It's been a busy two weeks so here goes.....
The day before New Year's Eve, Collin was feeling pretty good, but very sniffly & running a low-grade temp (99.4). His counts had been good & he was feeling well, so he & Jay went out to do some errands around 1 in the afternoon. I had Jay take a thermometer with him, just in case. Well, at 4, Collin's temp hit 102.9! Called the clinic, but they were closing so they said to head to the pediatric ER. They ended up spending 4 hours there, but, no inpatient stay was necessary. His counts were still good (ANC 1028), so they gave him IV Rocephin, a prescription for Cefzil & told us to check in with our onc, who would be on-call, the next day. It was definitely sinusitis, again. I was very proud of Collin, who explained to the doctor that he is allergic to Versed & has a parodoxical reaction (his phrasing) & what happens; Jay, who stayed very cool & was more than happy to handle things while encouraging me to stay at home; and, myself, who was able to pack a bag & wait by the phone in case they wanted to admit Collin. I think we did pretty good!
New Year's Eve & Day were great! We spent the night at Aunt Pam & Uncle Jack's house and celebrated Christmas with them, as well as, John & Brenda (Aunt Pam's brother & sis-in-law) and my mom. It was very good to relax & enjoy being together for the start of a wonderful new year!
Collin had clinic last Wednesday morning. His counts were good & there were no more fevers, thankfully. He got VM-26 (tenoposide) & Ara-c. His ANC had come back up a bit to 1200. We talked to the onc about his sinusitis. He suggested that we get an ENT consult & run an IgG test. The IgG test will test his immunoglobulin levels. If these are low, that could explain why he keeps getting the sinusitis & herpes flares. I talked with our nurse practitioner at St. Judes. She agrees with Dr. Hajjar & will set these things up for our visit to Memphis next week.
Collin goes to clinic tomorrow afternoon. He will get Vinblastine & start on a 5-day course of steroids. Hopefully, this time he won't have any pain. One of the things that I hate about this combination is that he often gets hip and/or leg pain so severe that I have to give him Codeine to alleviate the pain & use Therma-wraps around his hip area to help him rest at night. (Thanks to Aunt Pam & Uncle Jack who first suggested using them!)
We are scheduled to go to Memphis on Monday for his monthly visit & spinal tap, as well as the ENT consult & psychology follow-up. I think we are scheduled to return on Wednesday, but I'm not sure since the ENT consult wasn't scheduled when we first made these arrangements.
Collin is also set up to begin homebound schooling on the 21st. I met the teacher today. Her name is Mrs. Linda Bob. She is very nice & very willing to work with us. She will come on Mondays & Fridays from 3:30 to 5pm.
Well, now that I've talked your ears off, I'll sign off for tonight. We are spending tomorrow night with Aunt Pam & Uncle Jack, so I will probably update later in the week.
Please continue to keep Collin in your thoughts & prayers. Thank you, as always, for all of your love and support. I'd be lost without you!
Love & big hugs~
Shanon
Friday, December 24, 2004 7:18 PM CST
Merry Christmas, everyone! I do hope that you have all been very nice, ok, a little naughty is ok! We have decorated our tree with ornaments made from........LEGOS! It was a lot of fun! Jay created the angel for the top. Great job, honey!
Collin & I returned from Memphis on Wednesday morning. It was very cold when we got there on Monday, but things went very good. His counts were good & the doc is happy with the way his counts have been so far, so she is not planning to change any of his chemo. I told her that if she's happy with the counts, I'll learn to be happy with them, too. She did have Collin go for an ultrasound of his testicles as they seemed swollen or enlarged. She wanted to make sure that there was nothing leukemia-related going on. So, we did that before he went off for his spinal tap & chemotherapy. I did find out yesterday, his spinal fluid is clear & the ultrasound was just fine. Apparently, steroids can cause the testes to become inflamed. Thank God for all of our blessings & our safe return home!
I also want to thank all of you for keeping up with Collin & keeping us in your thoughts and prayers. They are being answered!
God bless you all! We love you!
The Burke Family
Friday, December 24, 2004 7:18 PM CST
Merry Christmas, everyone! I do hope that you have all been very nice, ok, a little naughty is ok! We have decorated our tree with ornaments made from........LEGOS! It was a lot of fun! Jay created the angel for the top. Great job, honey!
Collin & I returned from Memphis on Wednesday morning. It was very cold when we got there on Monday, but things went very good. His counts were good & the doc is happy with the way his counts have been so far, so she is not planning to change any of his chemo. I told her that if she's happy with the counts, I'll learn to be happy with them, too. She did have Collin go for an ultrasound of his testicles as they seemed swollen or enlarged. She wanted to make sure that there was nothing leukemia-related going on. So, we did that before he went off for his spinal tap & chemotherapy. I did find out yesterday, his spinal fluid is clear & the ultrasound was just fine. Apparently, steroids can cause the testes to become inflamed. Thank God for all of our blessings & our safe return home!
I also want to thank all of you for keeping up with Collin & keeping us in your thoughts and prayers. They are being answered!
God bless you all! We love you!
The Burke Family
Tuesday, December 14, 2004 9:04 PM CST
Good Evening to all! I hope you're all staying warm & enjoying the season! It is actually 43 degrees here in Florida! And....there's a freeze warning in effect! We might see 30 degrees overnight!
Collin has been doing very well these last few weeks, but he is dealing with sinusitis or a cold today. Despite this, he has been energetic, eating well & seems to feel pretty good. Last week his counts were 2000. This week they are 2900. He got chemo last Tuesday & today as well as starting on steroids today. I'm standing by with baited breath to see if I keep my happy child or the food-obsessed goblin takes over for the next week. (Just gotta love those steroids!)
I spoke with our nurse practitioner in Memphis today & she is going to review all of his recent lab tests to see if we need to adjust/increase his chemo. The results for the last 3 weeks have been in the 'normal' ranges, so I am concerned that he may not be getting enough chemo to ensure his remission. Maybe I am over-reacting, but, it's been my experience in the past that the target range for his ANC should be 1000-1500. We'll see what the doctor has to say when we go to St. Jude next week.
It will be a short trip, up Monday, back on Wednesday. He is scheduled to have a clinic visit, get a spinal tap w/chemo and receive IV chemo. Please keep us in your prayers for a safe trip & an uneventful visit.
I'll try to update when we return next week. If I don't get a chance.....Merry Christmas & May God Bless all of you!
Hugs & Warm thoughts~
Shanon
Thursday, December 2, 2004 6:53 PM CST
Happy Holidays to all! I hope everyone ate too much & was thankful for all that they have this past Thanksgiving! I know I did & am!
Collin officially started his continuation or maintenance phase of treatment! He has 80 weeks of chemo still to go, but the most intense part is now in the past.
Collin & I returned from Memphis the night before Thanksgiving. Our flight was delayed 2 hours, so we didn't get in until 12:30 am, but that's ok. Everything went smoothly in Memphis. Thanks to all who prayed or sent good thoughts our way. All of his test results, including MRD, were negative! Thank you, God! We will return to Memphis on the 20th, have his spinal & chemo on the 21st & return home on the 22nd.
The holiday itself was bittersweet. It was the first one without my grandfather (and Collin's best bud). He passed away the day that Collin & I left for Memphis this summer. On Saturday, we had a memorial at my grandparents' mobile home park. It was really nice to talk about Grandpa & hear about all of the many ways he touched so many lives. We all miss him very much, but never doubt that he his up above watching out for his favorite little guy & the rest of us as well. We love you, Grandpa!
We went to clinic on Tuesday this week & his counts were good. (ANC 1600) He received a dose of methotrexate into his line & started another med, 6mp, that night. He will take this for 7 days. We will go back next Tuesday to check counts and get chemo. Next week he is scheduled to get VM-26 & ARA-C. Both are pretty strong drugs, so he'll probably be a little wiped out by the end of next week.
I don't know about the rest of you, but Christmas seems to be heading for us full steam & I am NOWHERE near being ready! AGGGGH! Well, I'll do the best I can & enjoy the blessings that I have been given. (I try to do that everyday, but sometimes I slip up a little.)
I wish you all a wonderful week & safe holdiays!
Love,
Shanon
Sunday, November 21, 2004 1:57 PM CST
Hello! Hope everyone is having a great weekend! The weather here is beautiful & everyone is feeling good.
We went for counts last Tuesday. Collin's anc was 1500. We are all set to go to St. Jude tomorrow. We are scheduled to fly to Memphis at 12:30 on Monday & get his counts checked again when we arrive. As long as all looks good and his anc is over 500, Collin is scheduled to get a bone marrow aspiration, spinal tap w/chemo and several hours of chemo on Tuesday. On Wednesday, he gets his hips xrayed and teeth cleaned. We are due to fly out that evening at 7:40 pm & arrive in Orlando at 10:30 or so.
I'll let you know how things go when we return. Please keep Collin in your prayers for negative test results and an overall uneventful visit to St. Jude this week.
Have a great week!
Hugs & God Bless you all! We love you!
Shanon & Collin
Sunday, November 14, 2004 10:37 PM CST
Hi,everybody! We did make it back from Memphis on November 2, but it's been a heck of a week or so since. Here it goes....
We got home from Memphis on Tuesday & just relaxed on Wednesday. On Thursday, we went to clinic for a count check & Collin had a low-grade temp....100.3 so they did cultures and gave him antibiotics in clinic. Checked his temp before they let us go & he was at 100.8. Fever automatically means a hospital stay if counts are below 500. Well, his ANC was 21....so, off to the hospital for at least three days. Collin did have some diarrhea (sp?) along with the fevers, but overall he felt really good. The fevers stayed around 101 and lower so they gave him IV antibiotics every 8 hours to combat any infections. All the cultures came back negative but his temp was still hanging out around 100.5 or so. On Friday, all of his counts crashed (ANC 0, hgb 7.6 and platelets 24) so he had a blood transfusion as well as platelets.
The diarrhea stopped on Sunday night and he needed more platelets but still Collin was in good spirits and feeling very good. It looked like we were going to get to go home on Tuesday. Well, Collin started sounding stuffy Monday night. Tuesday morning his temp jumped up to 102.4 and he was having headaches on the right side of his head around his eye. We didn't get to go home. I was 99.9 ure it was sinusitis, but, with the temp, we had to do cultures again to be sure there wasn't any infection. On Thursday, they did a CT scan of Collin's sinuses and, sure enough, he had thickening on the right side consistent with chronic sinusitis. He finally had an ANC, 21, and the fevers were coming down again....hanging out around 100 to 101. The doctor came by Friday evening and decided that he was comfortable sending us home....YIPPEE! Collin's ANC was up to 112 and indications (25 onocytes for those who are familiar) are that they should be even higher by now. It was so nice to sleep in our own beds Friday night.
Saturday we had a nice day and relaxed, for awhile. I am sorely behind on my housework, so I was putzing around here and there trying to get a few things done. Jay was so sweet and arranged with my mother to watch Collin so that he could take me out to dinner. It was really nice. We got home and got Collin ready for bed when I realized I hadn't flushed his lines yet that day. So, I get everything together and the first one does just fine. Unfortunately, I couldn't get the other to flush at all. (Both lines need to be flushed on a daily basis to prevent clots.) It is not a good thing when one won't flush. I tried every trick there is to get it to go, but it wasn't happening. So, I had to call the doctor. (Poor man is probably fed up with me by now.) He said to try again in the morning and if it didn't go, head to the peds ER. Well, luckily it did flush today. So, no ER visit. Thank God!
Today has been fairly laidback and quiet, which is very nice. Collin has not had any headaches today and his sinuses seem to have stopped draining for now.
We go to clinic on Tuesday for counts and to consult with the doctor in Memphis to determine when they want Collin back to perform a bone marrow aspiration to confirm that he is still in remission. After that, we will begin Collin's maintenance (or continuation) chemo which will consist of several types of chemo on a rotating cycle of 8 weeks each for 10 cycles. This will be done by our doctor here with occasional trips to St. Jude for bone marrow testing.
I'm going to sign off for now, almost time for Collin's meds. I will update again when we know what his counts are & when we are returning to St. Jude.
As always, I want to thank you all for your love, support & prayers. God is listening.....always!
I love you all & thank you for keeping up with Collin's progress.
God Bless & have a great week!
Shanon :)
Saturday, October 30, 2004 9:30 PM CDT
Happy Halloween, everyone! I hope all you ghouls & ghosts are having a good weekend. Collin got to trick-or-treat around the hospital yesterday & hauled about 5 pounds of candy back to our room. (It was very cool!)
It's been a busy week for us, but we are finally on the slow end of things. Last Monday, Collin had outpatient surgery to remove one tooth & sealant on two others. That evening he started a higher dose of steroids than he has previously been on (oh, joy) & had his first of 4 doses of ARA-C which he received every 12 hours...8am & 8pm. Each infusion took 3 hours. 12 hours after the last dose of that he was switched to VP-16 which he received every 12 hours for 5 doses. Each dose took an hour to infuse then a hour watch time to check his blood pressure. He got his last dose of that Friday night. This morning we had his counts checked and Collin received a shot in his leg of another chemo called L-aspariginase.
In addition to all of that.....on Wednesday we met with the ortho who is not concerned that the pain in his hip was caused by any kind of congenital abnormality or AVN (avascular necrosis). Thank God! He would like to do an MRI & another xray the next time we come to Memphis to be absolutely sure, but, again he is not really concerned. On Thursday, we also saw a dermatologist because Collin has on occasion had tiny wart-like spots appear on his chest. She was very nice & said that they are a type of wart that those with a suppressed immune system pop up with whenever their counts are down. She said that if they get really bad & start to bother him (which they haven't) to come back to her. There are some creams that we could try.
Collin's counts have been on the way down the last few days....Wednesday his ANC was 2400, Friday it was 1200 & today it was 900. The only real concern we've had this week is that his glucose level has been kind of high a few times. This is due to the steroids & hopefully will not be a concern once they are out of his system. He takes his last dose tomorrow morning. He has been a bit tired these last few days as well, but with a white blood cell count of 1.5, that's to be expected.
We have nothing on our schedule for Sunday, thankfully, so we plan to sleep in & hang out. On Monday, we have to check his counts and see the dentist as a follow-up to his extraction. On Tuesday, he will get his counts checked again & have a spinal tap with chemo. If all goes well & his counts aren't too bad, we should be heading home Tuesday night. Please keep Collin in your prayers for an uneventful procedure.
Thanks for keeping up with us! God bless & have a great week!
Hugs & love~
Shanon
Saturday, October 23, 2004 3:41 PM CDT
Hi, everyone! Hope you all had a good week & are having a great weekend. First, let me tell you the great news I got the other day....not only was the MRD test negative (less than .010%) but it was totally clear! There were no leukemia cells visible! Thank God!
Collin & I arrived in Memphis on Tuesday. Got checked in & Collin had a slight fever. (Yippee skippy!) So, they drew cultures & gave him some antibiotics. We think his herpes was trying to flair up, but he was feeling good & his counts were good and the fever was down within the hour, so we got settled into the Grizzlies house for the evening.
Wednesday was pretty light, just clinic visit & psyche consult...basically a get to know you type session. It was very nice for both of us.
Thursday, ugh...where do I start. Collin was supposed to have his teeth taken care of with the dental clinic but he absolutely refused to take the nitrous gas so now it's been scheduled for Monday as outpatient surgery. They are going to fully sedate him & remove the tooth that needed the crown & fill the other cavity. Since the doc doesn't want to start his chemo until the dentist has done his work, our whole schedule has been bumped back. Collin will start his chemo Monday night, get it twice a day for five days, then have his spinal tap on Tuesday, November 2. If all goes smoothly, we will fly home Tuesday evening.
Collin's counts have been starting to drop a bit, but I think they are back on the rise. His hemaglobin & platelets had dropped on Thursday, but Friday they were back up. Once he starts his chemo, I fully expect to see a pretty drastic drop.
Thanks for checking up on us. Please keep Collin in your thoughts & prayers for an uneventful visit to St. Jude's.
Hugs & God bless~
Shanon & Collin
Tuesday, October 12, 2004 2:38 PM CDT
10/13/04 - Clinic Day......I took another pic today & moved the other to the photo album. Collin got his chemo today & his ANC was 1452! Wow! It hasn't been that high for almost two months! He started his steroids today (UGH!) so I don't know how long my sweet boy will stay sweet, but I'll take it while I can. Meanwhile, I hold my breath waiting for the mood swings to start & the food obsession to kick in! AGGGHH! Oh, well....this too shall pass. Our boy picked out his halloween costume today. He's going to be an evil wizard! A bit appropos with the steroids starting! Ha! Ha! Take care!
~~~~~~~~~~~~~~
10/11/04 - Update
Happy Fall! Above you will notice a new pic! Finally! I just took it today.
I'm sorry it's been awhile since I've updated, so I'll get right to it.....
Collin has been doing very well! We just got the MRD results back....drum roll, please....THEY ARE NEGATIVE! Thank God! He's been getting his chemo weekly & he did get some blood a few weeks ago. He's also had a head cold recently, but, all in all, he's had good energy & has been feeling good.
As far as school goes, we will be working with the county school board shortly to see about getting Collin a tutor under the home-bound school program. His chemo for the next two years will be very intense & we feel that he will be too susceptible to infections/colds, etc. to risk sending him to school. Pray for me that I may have patience doing whatever I need to do to get this arranged for him. :)
We will be going to St. Jude next week, 10/19. Collin's next block of chemo is very intense and I feel more comfortable knowing that the clinic/hospital is less than two minutes away compared to an hour here at home. He also needs to get to the dental clinic there as well as have an orthopedic consult for some hip pain he has experienced off & on. Nothing serious, but something that needs to be reviewed. If all goes well, we will only be there for one week. This chemo will probably wipe him out, as far as his counts go. It is only a one-week block, but will probably take 2 to 3 weeks for him to recover from. After he recovers, we will go back for a bone marrow test before starting his 'continuation' chemo which is 10 blocks of 8 week cycles.
Thank you for checking in on Collin. Please keep him in your thoughts & prayers for continued success!
Hugs~
Shanon
Thursday, September 23, 2004 11:40 PM CDT
Hi! Wow! We have been to & are back from St. Judes! It was a quick trip & everything went fairly well.
We went to our clinic Monday morning & Collin's ANC was only 312. So, I called Memphis & they told us to come ahead anyway. We'd wait for his counts to come up while we were there and, if need be, postpone his procedures until he reached 500. Well, we arrived in Memphis that evening & had his counts checked when we got there....his ANC was 500! I couldn't believe it! So, Tuesday morning we saw the doc & went over everything that had been going on since we left. Then, Collin went off to have his spinal tap w/chemo & his bone marrow test. When he woke up, we had lunch then went to the Medicine room to get his chemo. (He got VP-16, etoposide & Cyclophosphamide....pretty potent stuff.) Collin did get a pretty bad spinal headache. This sometimes happens after a spinal tap. He ended up taking codeine which helped. We went back to check counts again Wednesday morning, because the dental clinic won't perform any dental work unless the ANC is at least 1000. Well, after a loooong wait, we found out his ANC was back down to 400. So, no dental on this trip. We flew out Wednesday afternoon & stayed with Aunt Pam last night.
Collin's spinal & bone marrow show ALL CLEAR!!!! Thank God! We will get the MRD results sometime next week. Overall, everything went very well & we are glad to be back home.
We will be home for another month....getting chemo at our local onc. Then we go back to Memphis for another spinal & bone marrow and possibly a week of chemo.
Thanks for all of your prayers, love & support. And, thank you all for checking up on us. We love you!
Hugs~
Shanon, Jay & Collin
Sunday, September 19, 2004 10:46 PM CDT
Hi, everyone! I hope everyone is doing well & had a great weekend.
Well, at my last update, we were going into the hospital for fever & low counts just before Frances hit. Collin had an infection in one of his two lines & also cultured herpes in his mouth. He was inpatient for 9 days. We got out last Sunday & his counts are slowly coming back up. On Friday, his anc was 280. We go to our clinic tomorrow morning (Monday) to check his counts again. He should be over 500 by now. If he is, then we are due to fly to Memphis Monday afternoon. This will be a short trip.
Because Collin is on a research protocol, St. Jude's will do all of his bone marrow tests. So, we go to our clinic at St. Jude Tuesday morning to see the doc. Immediately after that, he is scheduled for a spinal tap w/chemo & a bone marrow test. Once he is awake & responsive, we go to the Medicine Room for chemo. These will take up most of the day. On Wednesday morning, he has an appointment with the dental clinic to have a cavity filled & a crown placed on another tooth. Provided all goes smoothly, please pray that it does, we will fly back to Florida that afternoon.
I will try to update when we get back from St. Jude. I hope all of you in Florida sustained minimal damage & that all of our family & friends have a great week.
God bless!
Shanon
Monday, August 30, 2004 10:20 PM CDT
**See update below 9/3/04***
Wow! Where do I begin? There's been a lot going on, so this is a little long....sorry! :)
We got home a week and a half ago & it is great! My mother & my aunt performed a 'home version' of "While You Were Out" on me......they painted my kitchen & living room & re-did the floors in those rooms as well as my dining room! I was totally blown away! It looks awesome! They did a wonderful job & I thank God for them! Thanks, Mom & Aunt Pam! I love you both!
Collin is doing very well! Thank God, again! We have been to our clinic twice since we came home & things have gone very well. Last week his ANC was 775. Today it is 207. We are scheduled to go back to Memphis on Wednesday, but that will depend on his ANC. He is scheduled to have a spinal tap, bone marrow aspiration & chemo, as well as have a crown put on a cavity. They will not perform any of these until his counts are over 500. We go back to the clinic on Wednesday morning to check his counts. If they are over 500, we are flying out that afternoon. If not, we'll check them again in a few days & reschedule our trip.
On top of all of our many blessings, our church, particularly a close friend of ours, organized a garage sale for our benefit. She spent a lot of time on it this summer & the sale was last Saturday. She did a great job! The sale raised over $1900!! Thrivent, a Lutheran charity organization, is matching a portion of what was raised! I thank every one who donated their time, goods & money. It was truly inspiring to see how much was donated & how many were there to help out! Thank you, Kelly! We love you & thank God for you!
We are going to Aunt Pam's tomorrow for a visit & to spend the night. We go to clinic Wednesday morning at 11:30, so I will try to update later that day or the next. Definitely by the end of the week.
I can't say it often enough.....God is good & always listening! Thank you all for your love, prayers & support!
**9/3/04 Quick Update***
Collin's ANC was 0 & he needed platelets, so we didn't head to Memphis yet. He is running a low-grade fever today so we are headed in to our home hospital for antibiotics, etc. Hopefully, it will be a short stay. We are scheduled to head to Memphis on Monday, but that will depend on Collin & Hurricane Frances. Please pray for us & all of the families here in Florida. Have a great weekend!
(((Hugs)))
Love,
Shanon
Saturday, August 14, 2004 2:19 PM CDT
YEAH! It's been a busy couple of weeks, but, (drum roll, please)........MRD is down to .014!!! Negative would be .010, but Collin has responded very well to treatment and the doctor (after consulting with the bone marrow team) has opted to not do a transplant and go ahead with chemo! We should be able to go home by the end of the coming week. I'm sooooo happy! The prayers & good thoughts are working! God has blessed us again!
We will have to come back to Memphis for bone marrow aspirations, but all of his chemo will be done by our wonderful doctor back in Orlando!
Thanks for keeping Collin in your prayers! Please continue to think of him....we still have a long road to go!
Love,
Shanon
Wednesday, July 28, 2004 5:13 PM CDT
Sorry that I've been so long between updates....we did get out for Collin's birthday & ended up back in 4 days later. Same things, low counts, sinusitis & herpes. We finally got out a little over a week ago or so. (I can't remember!) As of the last tests, Collin's bone marrow is negative for leukemia cells under the microscope. YEAH! We are still waiting on the MRD test, which is even more sensitive than that. 3 weeks ago the MRD showed .4183eukemia cells. He needs to get to zero or we will be considering a bone marrow transplant. Please, help us pray for zero MRD!
Collin has been doing very well overall. His spirits are good & he is feeling good. He received more chemo last Thursday. (Methotrexate, ARA-C & VM-26) All pretty heavy duty. His ANC yesterday was 1200, but should start going down again toward the end of this week.
***7/29/04
Collin's ANC is 1800 today. We are waiting for it to drop. We go back on Sunday for another check to see where we're at. Still no MRD results....soon, I hope. Keep the prayers coming....they ARE working!
Thanks for checking up on us & please keep us in your thoughts & prayers.
Love & hugs~
Shanon
Tuesday, June 29, 2004 9:42 PM CDT
Hello, everyone! By now, most of you are aware that we have been faced with the dreaded 'r' word....Collin has relapsed 9 months after completing treatment. It just about destroyed me that this could happen to him, to us. But, we did what we had to do & faced the future.
Collin & I have been at St. Jude's in Memphis TN since June 1. They did a bone marrow & spinal tap on the 3rd to confirm the relapse. He showed 80eukemia cells in the marrow & less than 50n the spinal fluid. (He will not require radiation.) He began treatment that day. Two weeks later, he was clear in the spinal fluid and down to 30n the bone marrow. As of today, he is still clear in the spinal fluid and at 4n the marrow. At this point, we are awaiting another test (MRD) to see if there is anything remaining in the peripheral blood. The doctor isn't talking about a bone marrow transplant at this point, but that may be something we have to deal with in the future. A lot will depend on the MRD tests.
Things have been kind of crazy & I know I'm jumping all over the place with this update, but this is my first chance on a computer since we got here. I will try to update whenever I can.
Collin's ANC hit 0 over a week ago. Two days later, he spiked a fever of 103 and was complaining of headaches. Turns out, his sinusitis is back. On top of that, they cultered for infections and he tested positive for herpes virus in his mouth. We are currently in the hospital and fever free for 3 days. They are saying that he may be released on Thursday. I certainly hope that is the case since that is his birthday.
All in all, he is doing very well and has a good attitude. (Whenever the steroids aren't in control.)
Collin enjoys receiving mail, especially since we are away from home. If anyone would like to send him a card we are staying at the Ronald McDonald House here in Memphis. The address is below.
I'll try to keep you up to date as much as I can. Please keep Collin in your thoughts and prayers.
God Bless!
Shanon
Ronald McDonald House
Collin Burke / Room 43
535 Alabama Ave.
Memphis TN 38105
Thursday, September 11, 2003 9:08 AM CDT
Good morning, friends! Things have been pretty busy around here for the last few weeks. Collin is doing well in school and, other than an ear infection, has been doing well health-wise. Jay is busy with work and I've been dealing with a cold for the last week. YUCK! Thanks to Terri, with BASE Camp, Collin & I got to go see 'Monsters Inc.' on Ice at the Bob Carr last Friday. We went with Kim, Callie, Paige & Cameron and we had a great time!
It's so nice these days, not to worry about making sure Collin takes his medicine every night or worrying about making sure he doesn't drink milk before taking it each night. It's happened quickly, but it feels like we are beginning to have a normal life. A life without chemotherapy and all of the things that going along with dealing with cancer. To be honest, I don't worry too much about the future of Collin's health. Mostly, I just feel relief & joy. Relief that it's finally over, except for monthly clinic visits to check his bloodwork. Joy that Collin has overcome his diagnosis & bloomed so beautifully over the last almost three years.
I can't thank all of you enough or give you the words to let you know how much you've done for me. Being at the other end of these emails and caring and showing your support for all that we've gone through has meant so much to me. I know I have been blessed in ways I could never have imagined. Thank you.
We went to the clinic last week and learned that ALL of Collin's tests were NEGATIVE!! His bone marrow & spinal fluid were both clean! All of the other various blood tests that they ran were negative. We go back tomorrow & once a week for the next two weeks. Next month, we go every other week. After that, we go once a month for the next year.
I will still send out updates, though, probably not near as often as I used to. I will always appreciate all of you.
Talk to you soon! I hope you have a great week!
Love,
Shanon
Sunday, August 31, 2003 11:07 PM CDT
WOW! Collin took his last dose of oral chemo med last Saturday, August 23, 2003....the night of his Aunt Heather's wedding! Two years and eight months later, Collin is done with all of his chemotherapy treatments! No more back pokes, no more steroids, no more meds! I think we are all still in shock that it's over. This past Thursday was Collin's end of treatment testing. It included a spinal tap, a bone marrow aspiration, an echocardiogram & and an EKG. While he was sedated for the spinal & bone marrow, they took blood samples for all of the other tests they needed to do. After his spinal & bone marrow, we went up to the clinic for him to be checked over. Pleasant surprise that Terri, from BASE Camp, was there with balloons, cookies, muffins & goodies for all of the kids who had birthdays & other milestones to celebrate. Shortly after we arrived, all of the staff got together to wish Collin a 'happy end of treatment' & gave him some gifts. It was especially nice that Callie, one of Collin's closest friends, was also in the clinic at the same time. It was so sweet & wonderful!
I got a call later in the afternoon letting me know that Collin's spinal fluid was all clear! No leukemia cells at all! Thank God! We should get the results of the bone marrow test next week, but, honestly, I'm not worried. I know, in my heart, that this phase of our lives is over.
It's been a busy month , with the end of summer, the start of school, a trip to Ohio for my sis-in-law's wedding & the end of Collin's treatment. We had a good time this summer & on our trip. I'm just glad this week is over. Hopefully life will find a new normal rhythm for us all.
I hope all of you had a great summer! I hope you have a wonderful Labor Day weekend!
Love, Shanon
Friday, July 4, 2003 11:17 AM CDT
Hello! I hope everyone has been enjoying their summer. It sure seems that it's going way too fast! Well, here's what's been going on since the last time I updated.....sorry if it's a bit long!
Collin graduated from Kindergarten at the end of May. He received the 'Math Achievement Award'. He had the highest math grade, 98.35%, in the class. He also had his allergy testing.....it was not pleasant, but it was over fairly quickly. He has light sensitivity to weeds & pine, but nothing that needs any ongoing treatment. As for his sinuses, things have been clear. I was giving him Sudafed every morning on the pulmonologist's recommendation to help dry him up & it worked great!
Collin went to The Boggy Creek Gang Camp the second week of June. It was a week-long 'sleep away' camp and, according to him, he didn't even miss me a bit. He had a great time & can't wait to go back next summer.
Collin's counts have been good for the last month, a little high - ANC has been running 1800 to 2300, but the doc & I agreed that, rather than increasing his meds and risking a crash of his counts which would cause us to hold his meds, we would like him to get every bit of them that he can. At this point, he has only 6 1/2 weeks of treatment left. I can't believe it! Part of me is very excited for this phase of our lives to be done & over with; another part is scared to death! I try not to think about it too much, but as it gets closer to the end, it gets harder. I'm trying to keep my faith that this chapter of our lives is coming to a close & we'll be able to move on without anything else happening. Please continue to keep Collin in your prayers.....remission forever!
Jay & I went to Tahoe the last weekend of May for the TNT century ride. It was beautiful! He had a great time & was very proud of himself. I was awed to see over 1600 people riding for people affected by leukemia, lymphoma, myeloma & other blood diseases. That weekend over $6 million dollars was raised for the fight for a cure! 76% of that goes directly back into funding research & family programs. It was inspiring.
As for the rest of June, we were pretty busy. I've been working 2-3 days per week with the school summer program & Jay has been busy with work.
Collin just celebrated his 7th birthday this past Tuesday! He is growing up toooooo fast! I can still clearly recall how tiny he was when I first held him. He was only 17" long & weighed 5 lbs, 13 oz. Now, he's over 3' 6" tall & weighs 61 pounds. He's such a little man! He had a great day & got lots of fun stuff that he 'was waiting for'!
As for today, Collin lost his first tooth! He's very excited to see what the Tooth Fairy will bring! We will be spending this afternoon with my grandparents & going to find some fireworks tonight. Tomorrow we will load up the puppies & head down to Aunt Pam & Uncle Jack's house to spend the day & night.
I hope all of you have a safe & happy weekend! As always, I love all of you & thank you for always being here for me!
Love, Shanon
Saturday, May 24, 2003 3:23 PM CDT
Hello! I hope everyone is enjoying their holiday weekend. We're just planning to hang out around the house & 'chill out'. (At least, I am.)
Collin has had a great couple of weeks in school....despite being on steroids a week ago. On the 15th, Collin took his last dose of steroids !! I can't believe that we are in countdown mode! No more steroids, no more vincristine! He gained 5 pounds and hasn't dropped it yet! We went to clinic on Thursday this week. His counts were good, ANC 1800, & the doc said the spinal fluid from his lp came back all clear! We get to wait two weeks before we go back.
This coming Thursday afternoon, Collin goes to get a skin allergy test done. This will, hopefully, determine what exactly he is allergic to. They have ruled out asthma, so now we test allergies. He's not going to be happy about the test.....it consists of 40 tiny scratches on his back.....but, he will survive. (He might just ignore me for the rest of the day, but, what can you do.) We will know before we leave the office what he reacted to & what to do about it. I'll drop a note, if I can, and let you know what happens.
Collin is in his last week of school next week. He has Monday off for the holiday & every day of the week is a half day (11 am dismissal) with lots of stuff planned. Tuesday evening is his Kindergarten graduation program....I just know that I'm going to cry! Wednesday, the kids are going to the Eustis pool for a pool party. On Thursday, several grades (I think) are having a sports day. On Friday, they go to awards chapel, clean out their stuff & they are out of there!! He and Grandma Nurse are going to spend the weekend together while Jay & I are in Tahoe. I'm getting very excited!
As for me, my kitchen work is basically done. We will get together one day this week to clean, but that shouldn't be too labor-intensive. I do work with the daycare on Tuesday & will do so during the summer, just not sure yet how often I'll be needed.
Well, if I don't have a chance before I leave to drop you a note, I hope you'll all have a great week! Please pray for a safe trip & good weather for Jay, I and the other TNT families going to Tahoe next weekend.
Love,
Shanon
Thursday, May 8, 2003 4:29 PM CDT
Hello, All!
First, let me apologize for being quiet for so long. It's been a busy month or so, with work & family visits.
Collin has been doing very well. His counts have been good lately & no problems with ears, nose or throat. :) Today was a milestone of a sort for us.....it was Collin's last spinal tap with chemo & his last dose of vincristine (one of his chemo meds). He did very well today, overall. He was a bit combative when he woke up from his anesthesia, but he calmed down after about 20 minutes.
It's hard to believe that, in a little more than 3 months, he will be off treatment! We're very excited, but, I'll admit, I'm a bit nervous too. We don't go back to the clinic for two weeks, which is nice.
As for the rest of things......Jay has been busy with work & training for the TNT ride in Tahoe. I'm lucky enough to be able to go with him. I can't wait! My mom has been doing well. She & Collin planted a veggie garden about a month ago & we are starting to see the beginnings of some green beans & tomatoes! She & I also laid sod at my grandparents' house several weeks ago....not an experience I care to repeat, but we did a darn good job. We had a visit from Jay's sister & her husband in April. It was nice to spend some time with them. I hope they enjoyed the time as well. My great uncle Bud was in town the same week. He stayed with Aunt Pam & Uncle Jack. We had a very nice visit. I look forward to seeing him again the next time he visits. My grandfather had back surgery last week, to help support his spine. He seems to be doing pretty well & may be able to go home within the next week or so, I think.
The school year is starting to wind down. Collin finishes school on May 30th. He has been accepted to The Boggy Creek Gang Camp for their summer session for a week next month & he's very excited. (And nervous, but I think he'll be too busy to miss us.) I will be finished in the kitchen the week before school lets out & plan to work with the summer program at school, unless I find another job. I have been keeping my eyes open, so, we'll see what happens.
I've added a new pic of Collin taken in April. He's growing up way too fast!!
Well, I've rambled on a bit. I hope all of you are happy & doing well. I'll drop another note soon & try not to be so long between updates.
Love,
Shanon
Friday, March 21, 2003 10:57 PM CST
Happy Springtime! I hope you are all enjoying some warmer weather these days. (I know we have been!)
Collin & I have had an enjoyable, if not, busy week. Tuesday, Collin spent the day with Grammy & Grampy Volk (his great grandparents). Grampy picked him up at 8:30 am & took him to breakfast at McDonald's. After spending almost two hours in the Playplace, they went back to G & G's house to see if Grammy was finally up & ready for company. They all had a great time & ended the day with an early dinner at Perkins before returning home at 6pm. It was nice....gave me some time to catch up on reading, laundry, vacuuming, etc.
On Wednesday, Collin, my mom & I went to Ponce Inlet which is just south of Daytona. We visited the Marine Science Center & then went over to the Ponce Inlet Lighthouse. Both were very interesting places. Collin & I made the climb (all 203 stairs) to the top of the lighthouse. It was a beautiful view!
Collin lost a bet with me on Wednesday night, (he swore there was no such thing as the Red Sea!), so Thursday morning he (with a little help from me) had to clean his bedroom. There were LEGOs & toys everywhere! We finally got a handle on it & found the floor, so I took him & Grandma to the Eustis pool for a few hours. We were all pleasantly tired when we got home. Grandma stayed with him until Jay got home from work, since I went to a support group meeting last night. It felt really good to be out with other moms who understand so well.
This morning was Collin's clinic appointment. His ANC is high again.....5016! All of his counts are great. We go back next Thursday for another check of the counts.
As far as what the ENT wanted to do about his sinuses....I have decided that, since Collin has not had an ear or sinus infection for quite awhile, we are going to hold off on the IV antibiotics. I've talked to a lot of other parents who have dealt with similar situations (child on chemo + sinusitis) and several have stated that once their child was off treatment, the sinusitis was resolved. I believe that one reason he has had so many problems over the last two years is due to the chemo suppressing his immune system. I plan to wait until he is off treatment for at least 6 months before revisiting the issue. We will continue with the allergy med & the nasal spray for now. If he ends up having some more infections related to the sinusitis, then we will reconsider our decision at that time.
Tomorrow we are just going to hang out at home & get some leaves raked & other misc. jobs. Collin's been a bit tired today, so I think we'll stay close to home & recharge before returning to school on Monday.
Have a great weekend & I will update you next week!
Love, Shanon
Saturday, March 15, 2003 5:39 PM CST
Hello! I hope all of you had a great week. Collin had a pretty good week overall....still being stubborn with the teacher occasionally, but we're working on that. (She calls him a 'willful' child. HA!)
Went to the clinic on Friday.....counts are great. ANC is 3640 ~ wow! That's two weeks of high counts.....four more & the doc says we'll increase the meds. We go back on Thursday.
We also had an appointment with his primary physician on Friday. This was just a consultation. The ENT has been in touch with him and wants to set Collin up for 10 days of IV antibiotics to try to clear up the sinusitis. They were going to have a home health nurse come out & start an IV (that would have to be replaced every other day), but I told him that I'd like to talk with the oncologists office & ask about putting a PICC line in his arm. Very similar to an IV, but he would only have to be poked once, (regular IV would mean at least 4-5 pokes over 10 days), and I could do the meds on our own schedule, not someone else's. The doctor was fine with that. He said to wait until the end of the week so we could enjoy the break & he would sign off on whatever I arrange to do. He was very nice.
So, I'll call the onc's office on Monday & ask about the PICC line and see what they have to say. If everything goes well, we should start on the antibiotics Thursday or Friday. I'll let you know.
As for the break itself, we're planning to spend at least one day at the beach. Collin hasn't been able to play in the ocean since diagnosis due to infection concerns when he had his central line and we're looking at having 80 degree weather. I can't wait! Otherwise, I think we're going to hang out at home, play LEGOs (of course!) and maybe spend a night with my aunt if she'll have us. (Still have to talk to her about that.)
I hope all of you have a nice weekend! Take care of each other!
Love, Shanon
Friday, March 7, 2003 10:40 PM CST
Good evening! I do hope all of you had a great week.
We went to the clinic yesterday & things went downhill from there. :( Instead of the usual finger poke, Collin needed to have blood drawn from a vein. I used the special cream that numbs his skin, but once the nurse got the needle in, she slipped slightly and had to dig around for the vein. Collin was screaming bloody murder! I would have, too. She finally gave up on the vein, but not before poking a nerve. His arm hurt like the devil all afternoon & he was still complaining this morning. She tried the other arm & got the vein right away. Thank God!
His counts are great, if a little high. (I know, we're either too high or too low....just can't seem to find a happy medium.) ANC is 3360, his hemoglobin is 10.9 and everything else looks great. So, we go back next Thursday for another count check.
After that, we had to go over to the hospital for the dreaded Pentamidine breathing treatment. Collin started crying the minute the air was turned on. I had to hold him still & hold the mask on his face! He kicked me so much, I'm surprised I don't have bruises on my legs. I felt so awful, but I explained to him that there's just no other option. We finally got through it.....thankfully, it only takes about 15-20 minutes. He was so exhausted from his afternoon that he slept all the way home.
I called the clinic after school today to get the results of his blood tests. His IgG level is in the high end of the normal range. So, the ENT is supposed to call me Monday to set up an appointment and address the next option for treating his sinusitis. That would be IV antibiotics. I believe it will involve having a temporary IV catheter placed in his arm & administering the meds at home over a few weeks. I don't know all of the details. I'll let you know when I do.
Sorry if I seem so down, it's just been a long week. I feel really bad for our little guy....he's such a sweetie & doesn't deserve any of this. Then again, none of the kids deserve what they have to go through.
I hope all of you have a nice, sunny weekend. Please keep Collin in your thoughts. Thanks for being here for me.
Love & hugs~
Shanon
Wednesday, March 5, 2003 9:32 PM CST
Hello! Sorry I didn't get to this sooner, but I wanted to have some more info before I sent it off.
We went to the clinic on Friday for counts. YEAH! His ANC was 782 & all of his cells look like happy, normal cells. Nothing suspicious! Thank God! His hemoglobin was also up to 9.9....no more anemia to worry about. So, Dr. H put Collin back on his nightly 6MP & weekly methotrexate. Before his spinal tap, he was taking 125% of both meds. The doctor decided that we will go back to 100% and see how his counts respond over the next 6 weeks. If his ANC is consistently high, then we will start to increase the meds again. If he stays below 1500 without dropping lower than 500, he will stay on these doses for the remainder of his treatment. We go back tomorrow.
After the clinic, we went to see the ENT about Collin's ears & CT scan. She removed the tube that was sitting in the canal of his left ear & said that the ear looks clear. The tube in the right ear is starting to work out, but is still in the drum....so we have to wait. As for the CT.....Collin has sinusitis. The walls of his sinus cavities are thicker than they should be. We have a few options for treatment but Dr. Cotter wanted to discuss them with Dr. Hajjar before we decide what to do.
Today I talked with Angela, the nurse practitioner that works with Dr. H. (I hadn't heard anything from Dr. Cotter, so I thought I'd check in before our appointment tomorrow.) When we go for counts tomorrow, they will draw blood & check Collins IgG levels. I think it is a measurement of his immune system, or something to that effect. He's had it tested twice before & been in the lower end of the normal range. If he tests lower, then they will set Collin up for IVIG.....Intravenous Immunoglobulin.....to help his body deal with the sinusitis. I don't think we'll get those results back until Friday. If they are still in the normal range, then we will need to consider IV antibiotics for several weeks in the hope of resolving the sinuses. The last resort would be sinus surgery. Please pray that it doesn't come to that.
All in all, we had a good week at home together & played a lot of LEGOs. :) Collin went back to school on Monday & has had a good week so far. (Still being stubborn occasionally, but not too bad.)
I hope you are all doing well & have a great weekend! I'll try to drop a note Friday to let you know what we find out.
Love & hugs~
Shanon
Monday, February 24, 2003 5:44 PM CST
Hello to all! It's been a doozy of a week! Last Monday, Collin went for the CT scan of his sinuses. He was very well behaved & stayed still throughout the whole procedure. We go to the ENT this Friday to see what, if anything, it showed & what she wants to do about it.
Last Thursday, we went for counts. His ANC wasn't great, 702, but of concern was his hemoglobin. It was down to 8.8, which means he was anemic. Doc told us to hold all chemo & come back today. Needless to say, I was a little on edge. But, after talking to a friend & a family member, I decided to just try to enjoy the weekend & let things rest. Doc said he wasn't concerned, just a little confused as to the cause for the anemia. We went back to the clinic today, to recheck counts & see if a transfusion was necessary. Luckily, it wasn't. His ANC still sucks, only 41, but all indications are that it was either due to medication or a virus. His hemoglobin is up a bit to 9.1 & he has a lot of monocytes, which means his ANC should be back up by the end of the week. I am highly relieved. I will be keeping Collin in all week, since low counts means he is at risk for infections, but I am glad to spend the time with him. We go back to clinic on Friday morning to check counts again. He will go off of Bactrim & back to Pentamidine breathing treatments.
Anyway, we had a pretty pleasant weekend. I went to a 'crop' on Friday night & I'm really glad that I did. I got out for a few hours & got back into the mood for working on Collin's scrapbook. Saturday was kind of yucky, cloudy & rainy, but we enjoyed the day inside. Collin finally finished his steroids on Friday, so the munch monster is almost gone.....thankfully. If I have to look at one more piece of bacon, I think I'll scream!!!
On a special note, I ask that you pray for or send out good thoughts to a few of our clinic friends. Emily, who will be 4 on Friday, has had a reoccurrence of neuroblastoma. She has started treatment & I hope that all goes well. Also, Austin, who is 12, I think, has had a reoccurrence of non-hodgkins lymphoma. He is heading toward stem cell transplant next week. Please keep these beautiful children and their families in your thoughts.
I'll drop a note on Friday to let you know what's going on. I hope you all have a happy, healthy & sunny week!
Love,
Shanon
Sunday, February 16, 2003 10:52 PM CST
It's late so I'll jump right in.....
On Wednesday, we went to the ENT to follow up on the possibility of sinusitis being the cause of his chronic ear infections. Collin was great for the Xray tech who took pics of his sinuses. The doctor said that his ears look great & that the tubes need to come out. She is also sending him for a CT of his sinuses on Monday, to verify what she calls 'old blockage' in his sinus cavity. We go back to see her on the 28th & find out what needs to be done.
On Friday, after what seemed like forever, Collin's spinal tap was done & all went well. His ANC was low, 307, which could be due to the Bactrim or the increase in his methotrexate. The doc said to hold all his usual meds & start on the steroids -- oh yeah. We go back Thursday afternoon to see what his counts are & which med to make adjustments.
The steroids are already kicking in......he's moody, tired & very whiny! Thankfully, it will only last a week. (I just hope we both survive it!)
I'll drop a note next Friday & let you know what's happening. Say a prayer that all goes smoothly with the CT scan tomorrow....with his current mood, I have no idea what to expect.
Love, Shanon
Friday, January 31, 2003 at 10:22 PM (CST)
Hello! Well, luckily enough I didn't tile myself to the bathroom floor!! LOL! Actually, it turned out very nicely & I'm very proud of myself.
Collin has been doing well. We went to the doc yesterday & his ANC was 2300! We've now gone 6 weeks, approximately, with counts over 1500 so it's time to increase his methotrexate by 25%. He's also doing well being on Bactrim. It was nice to be able to skip a week & even nicer since it will be the norm now that he's doing so well. We don't go back until the 14th, when Collin with have a spinal tap w/chemo. This will also mark the beginning of the end.....he will have 6 months of treatment left! Yeah!!
He's also been doing well in school, except for slightly sloppy work. He's become more mature these last few months & is growing up way too fast for me! LOL
Jay & his father (who has been in town from Ohio for the last week on business & will be here next week for the same) are participating in the Team in Training Celebrate Florida Century Ride tomorrow. That's the 100 mile bike ride to raise funds for the Leukemia & Lymphoma Society. Please keep them in your thoughts for a safe, pleasant ride.
I will drop a note again after Collin's spinal tap. Hope you all are doing well & enjoying the winter!
Love, Shanon
Thursday, January 16, 2003 at 09:47 PM (CST)
Hello! I hope everyone is doing well & that the new year is off to a great start for each of you. How do I begin? Well, two years ago tomorrow our lives were changed forever. We didn't know where this road would lead, but we have been blessed. Collin has done very well & our family is closer than ever before. I've learned a lot about having faith; about having the love and support of friends and family; about what I can endure for my child's sake; about what kind of person I am; about the amazing child that we have & what kind of friend my husband can be.
It's amazing to me to realize that the reason for leukemia touching our family could possibly be as simple (& complex) as a greater power bringing so many of us together to show us these things. I wish it hadn't been necessary to come in the form of cancer touching our son, but I accept it & hope it helps him to be more aware of people and how special each of them are.
As always, I want you all to know that I love each of you & appreciate all that you give to me without even realizing it. Just taking the time each week to see how Collin is doing is an act of kindness & I thank you for that.
Collin is doing very well! His ANC was 1643 today & his ears are clear! That makes 3 weeks in a row of a stable count! I was soooo excited! The doc said now that his counts have become stable we can wait two weeks before our next visit, finally!
I got the results of Collin's neuropsychological evaluation two weeks ago. We have one smart cookie! His overall IQ is 122! He is reading at a mid-third grade level; his math abilities are at a second grade level & his written expression is at the fourth grade level!! I am so proud of our boy! He does have some difficulties, mild though, with attention & free recall. But, with time & maturity these may resolve.
So, that's where things are right now. Jay is as busy as always & two weeks away from his 100 mile bike ride. He is checking into being a mentor for the Tahoe ride which takes place in June. Collin got his report card last week & is doing well across the board. As for me, I've jumped head first into redecorating one of our bathrooms. My progress has been slow, but steady & I'm enjoying myself. So far, I have removed the old vanity & installed a pedestal sink; removed the laminate from the cabinets above the shower, sanded, filled & repainted them & the frame; removed the linoleum from the floor & the wallpaper from the walls. My aunt is coming over tomorrow to help me hang the new wallpaper & then I will be installing ceramic tile over the weekend......wish me luck!
Sorry this is so long. I hope you all have a great weekend & I'll drop a note in another two weeks! (Maybe sooner, if I don't tile myself to the bathroom floor! HA!)
Love, Shanon
Tuesday, December 10, 2002 at 09:30 PM (CST)
I have had a hellish week or so. I hope you all will bear with me & tolerate my need to vent a little. Thank you soooo much!
Collin had a cold for Thanksgiving, which made for a long holiday. Things were going pretty well, except that he wasn't getting over the cold.
On Wednesday, last week, he complained to his teacher that he felt sick in his tummy. We came home & he fell asleep. He's been complaining off & on for over two weeks of leg pain, but it's always the muscles in the back, not the bones. The doc & I had attributed it to his dose of vincristine recently. He just hadn't been himself lately.
Well, we went last Thursday for counts & guess what.......his ANC was 108!!! His HCT was 21, down from 28.2; his HGB was 7.5, down from 10.2! With everything else going on with him the last few weeks, I was freaking out. I was starting to fear the worst.
I was standing in the exam room at the window, feeling fear & dread creep into my bones. I was just staring outside & praying that they were not about to tell me that my worst fear was being realized. It was kind of a gray, cloudy day, but for one brief moment, in the space I was staring at, a rainbow appeared. Now, I am not a deeply religious person, but I cannot discount what happened when I saw that rainbow. All of the fear drained out of me and, I don't know how, but I knew that everything was going to be OK. Sure enough, the doc came in a few moments later to tell me that Collin was experiencing hemolytic anemia induced by the Dapsone that he had started on last month. We would stop the medication, and hold all of his chemo meds & he might need a transfusion.
So, we went home after they asked us to come back for another CBC on Friday to see if he was recovering. On Friday, his counts had started to rebound, ANC was up to 630, but the hemoglobin was down to 7.1. They thought about doing a transfusion then, but decided to wait the weekend out & try again on Monday.
Well, Friday afternoon he starts complaining that his ears hurt! I had some ear drops for pain & gave him that. It seemed to help. So, we suffered through Friday evening & Saturday, living on tylenol & benadryl.
Sunday morning, his ear is draining & he's running a fever. Doc called in a scrip for Zithromax, thankfully & Collin managed to make it through the night peacefully.
He was looking better Monday morning, so I figured we were in the clear for the hemoglobin. NOT !! CBC came back with HCT of 18.7 & HGB of 6.5......time for a transfusion. UGH! So, we got to spend all day yesterday in the outpatient clinic waiting for the blood to get there & finally started the transfusion at 3:30pm. We didn't get home until 10pm last night. He is much perkier (and pinker) & more like himself again. So, back to school tomorrow! (On top of all of this, Jay was out of town from Thursday to Sunday, so he got to avoid all of this!)
Now, life feels like it's getting back to normal. I haven't gotten any Christmas shopping done, or my mother's birthday gift yet & there's just not enough time in the day! But, I will survive & do what I can.
Thank you so much for putting up with me. I love you & wish you a pleasant week.
Love,
Shanon
Saturday, November 23, 2002 at 07:57 PM (CST)
Hello! I'll get right to it.....Collin had his spinal tap yesterday & everything went smoothly. His spinal fluid looks clear.....YEAH!! His liver functions are elevated, so the nurse practitioner told us to stop giving him the Dapsone until we go back next week. They will recheck his levels & see if it is the culprit. His ANC is down a touch, 912, but he has 23% monocytes which indicate that his counts will be on the rise. It's probably low this week because he has a cold.
He woke up this morning without any ill effects & has started taking his steroids. He will take these, along with his other regular meds for the next week. It should be fun, not! This is when he gets very moody & obsessed with food. Luckily, it only comes once every 3 months. (At least he should eat well on Thanksgiving Day!)
One of our friends from the clinic, Callie, had her birthday party today. She turned 4! She's a beautiful little girl! We had a great time.
Take care & have a good week!
Shanon
Monday, November 18, 2002 at 10:34 PM (CST)
Hello! Things are going pretty well this week. I hope all of you are having a good week & staying warm.
Collin went to the ENT on Tuesday for follow-up on the ear tubes that were placed in March. The left tube has a 'site' infection (tissue around the tube is inflamed) and the doc thinks the ear may be pushing the tube out. (They typically only last 9-12 months, so she's not surprised.) She gave me ear drops to put in twice a day for a week & we'll see her again next month.
Went for weekly counts check up on Thursday....ANC is 1222, a little better than the week before. I have taken Collin off of all of his allergy meds, except Benadryl at bedtime, & his cough seems to be gone. Go figure! Otherwise, things are progressing just fine. This Friday is his scheduled chemo/spinal tap day, so please say an extra prayer or send out good thoughts that all goes well & his fluid is clear.
Jay is keeping busy with work & training for the TNT ride. Unfortunately, he wrecked his bicycle a week ago & is temporarily borrowing one from his teammate until he can raise funds to purchase a new one. By the way, Jay is fine....a few scraps & healing nicely.
I am feeling much better. Finally over my cold & getting into the holiday mindset. Jay is planning to hang our Christmas lights this weekend & I'm very excited to be hosting Thanksgiving dinner in our home. It'll be nice not to have to transport the bird to my grandparent's home this year! :)
I need to ask for your help, if you can give it. As some of you know, I have been doing what I can to help the cause to raise awareness of childhood cancer. If you would go to the website below & check out the Candlelighters' Light up the Holidays with Hope campaign & consider getting involved, I would be grateful. On the site you will find info about the Gold Ribbon tree that will be adorned with gold ribbons bearing the name of the children that are fighting cancer, have survived or have lost to cancer. The purpose of this tree is to raise awareness. There is also a sample letter on the site if you feel so inclined to write to your state reps & congressmen about our fight.
www.candlelighters.org
Thank you, as always, for all of the love & support that you provide us. I love you all!
Love,
Shanon
Friday, November 08, 2002 at 08:09 PM (CST)
Hi! Well, another week has come & gone. Time flies & so on.....
Collin is doing fine. His counts are better, ANC 1000. Cough is getting better & lungs are still clear. We go to the ENT on Tuesday for a follow-up on his ear tubes, so we'll see if she has anything to say about his sinus's.
Jay is as busy as ever, between working & training for the bike race in February. He's working very hard at both & doing well.
As for me, I have another cold. Such as life, right?
Take care & be good to eachother!
Love, Shanon
Sunday, November 03, 2002 at 09:57 PM (CST)
Hello! I hope everyone had an enjoyable & safe Halloween! I decided to let Collin show his 'true colors' for one night.....he decided to be a devil! He was definitely the most handsome one I've ever seen! (The attached pic was him playing around a few weeks ago.....once I get the pics developed I scan in the full costume.) He had a great time & the weather had just enough nip to feel like fall. It was great!
Went to the doc on Friday for our weekly visit. His counts were pretty low, ANC 532. Not enough to stop chemo, but definitely enough to prevent the doc from increasing his dose. No apparent reason for the drop, so we'll see what happens next. Just goes to show that even though we are in the maintenance phase of treatment, nothing ever goes as expected. We go back on Thursday.....I'll keep you posted!
This weekend has been really nice. I finally got a chance to get some things done around the house. We cleaned out the attic over my mother's 'cottage' & put a few things away on Saturday. (They left a lot of trash up there!) Today, Jay went on his training ride & rode about 41 miles. He said it felt great! I think he's a masochist, but then, that's why he married me, right? Ha! Anyway, I put him to work folding laundry this afternoon while I finally cleared the rest of the boxes out of our dining room. YEAH!! I'm hoping to paint it in the next few weeks. We'll see what the budget says!
Well, that's all for now! Hope everyone has a great week! Talk to you soon!
Love,
Shanon
Sunday, October 27, 2002 at 05:30 PM (CST)
~~~ Happy Halloween! ~~~
Hi! Once again, I am about a week behind. Some days, I'd just rather stay in bed! Ha!
I'll get right to it! Collin went to the doc on Thursday. His counts have been good for the last two weeks. ANC 3300 last week; 1700 this week. His left ear had an infection w/drainage last week, so we called the ENT & they called in some ear drops for him. They seem to have done the job....no more draining. He's still coughing a bit; going on 3 weeks now. The general consensus is that he may need a new allergy medicine. His lungs are clear, but his sinuses are constantly draining lately. We may end up going to see an allergist, but we're going to wait a bit longer &play it by ear. We go back to the clinic on Friday, for counts.
Things have been very busy again. We went to Boggy Creek Gang Camp last weekend & it was wonderful!! Everyone was great & full of energy! We were all exhausted when we got home Sunday afternoon. Collin is really excited about the idea of going for a sleep-away camp next summer at Boggy Creek. They do week-long camps for kids ages 7-17 grouped by diseases. It was a wonderful experience! I would love to do it again!
Hope everyone is doing well & enjoying the fall weather!
Love,
Shanon
Friday, October 11, 2002 at 09:47 PM (CDT)
Hello! I hope all is well with everyone & that you're all getting into the 'Halloween Spirit.' (It's one of my favorite times of year!)
Collin went to the doc yesterday.......ANC is 4600, which is pretty high, but it could be that he's getting the cold that I just got over. As a precaution, he has been put on antibiotics. Try to 'nip it in the bud' before it breaks into a full-blown cold.
His week has been pretty good. He's been 'testing' me quite a bit lately, but I think that's all it is. Once I put my foot down, he settles down a bit. Just seeing how far he can push Mommy, even when she's sick.
My Mom is doing fairly well also. Physical therapy is progressing nicely. She's needing the walker less and less, even though walking more than 15 - 20 feet or so does still tire her. She did go to see the kidney doc the other day & the verdict is in........No need for further dialysis AT ALL!!! Thank God! Her functions are still high, but the doctor is very happy with how they have responded. We couldn't be happier.
Jay has had a busy week. Work, as usual, and going to his TNT gatherings. Tomorrow he is helping with a booth at the Mt. Dora Bikefest, during which there will be a different century ride. (His isn't until Feb. 2003.) They are also allowing him to do some fundraising for his own ride. We have been lucky enough to have a few local restaurants & stores donate gift cards and will raffle them off this weekend. He's very excited! He's also been given some plants to sell for donations.
That's about it, folks! Have a great weekend & you'll hear from me again next week.
Love, Shanon
Friday, October 04, 2002 at 10:10 AM (CDT)
Hi, Everyone! Hope you're all doing well & having a good week. Things have been kind of busy around here lately. I'm very sorry it's been so long since an update. Here we go......
Collin has been doing very well these last few weeks. Counts have been good.....yesterday his ANC was 2500. He's behaving himself in school & seems to be enjoying it. (According to the teacher's aide, he enjoys being the one to help others spell & sound out words! I'm so proud of him!)
We went to Sea World last Saturday. Tickets were courtesy of BASE Camp, an organization that does support groups & gives assistance to families & children dealing with cancer. We had a great time & Collin won his own stuffed Scooby-Doo! It's almost as big as he is!
This weekend we are going to St. Augustine to meet with other families from Florida & S. Georgia whom I have 'met' through my on-line leukemia support group. A friend of one has offered the use of some condos & we will be having a beach party tomorrow. I can't wait to put faces with names & spend time getting to know the families & their children.
Jay has signed up to do a Team-In-Training 100-mile bicycle race in February of 2003. He has been riding as much as his work schedule will allow in preparation. In the meantime, the letters that we sent out asking for friends & family to sponsor Jay in this ride have been coming in wonderfully! So far, Jay has raised almost $800 for the Leukemia & Lymphoma Society! His goal is $2500 & we're still working on ways to raise more funds! We're both enjoying the effort & feeling of giving something back to the organization that has done so much for research & for us, personally. It feels good!
I have been busy working a bit & doing the usual Mom stuff. On top of everything, I woke up on the morning of my birthday with a really bad cough! What a birthday present...UGH! I have a cold, but am starting to feel much better today, finally.
So, that's the scoop! Hope everyone has a wonderful weekend & I'll be in touch next week. As always, I love you all!
Love, Shanon
Friday, September 13, 2002 at 12:10 AM (CDT)
Hi! Sorry that I missed a week, but my aunt has been visiting from Ohio & we've been kind of busy. So, here's two weeks worth of 'scoop':
Collin finished up his steroids last week & his counts were great! He officially started the maintenance phase of treatment which means he only has one year to go! He now takes 6mp nightly & oral methotrexate once a week for one dose. He will still get the spinal tap w/chemo & IV meds every 3 months, but, with only a year to go, that means he only has 3 more to go & one tap with no meds for the OK to go off treatment a year from now. WOW!
We went to clinic today & I was totally taken back that his counts were only 580! He hasn't been that low for almost two months & that was due to a cold. No reason for it this time except, maybe, coming off of the steroids & increasing his 6mp. We'll see what next week brings.
I get to play 'proud mama' here for a moment......it seems our shy little guy has decided to show his teacher & her aide just how smart he is. I've known since January that he can read. He reads to me all the time, but he wouldn't do it much for anyone else, even my grandparents. Well, he was reading to some of his friends at school & his teacher was amazed! They have decided to use this as his 'motivation' to get his work done in time. Whenever he gets his work completed, he gets to go read a book to Mrs. McCall, the aide. He's gotten all of his work done in the last week and a half. His teacher, and this is the best part of all, says that he is reading at a THIRD GRADE LEVEL!! Is that awesome or what???!!! I'm just proud beyond words!
Mom is doing well. Getting a touch stronger every day & doing physical therapy three times a week. The great news with her is that the kidney doctor does not foresee her having a need for dialysis. Thank God!! Her kidneys are not 'normal' but getting back into a normal range for her. It was a load off of all of our minds.
That's the scoop for now! Hope everyone is doing well & has a great weekend!
Love, Shanon
Sunday, September 01, 2002 at 11:50 PM (CDT)
Hello, everyone! It's been another busy week around here. I'll start with Collin & work my way thru the family. :)
Collin's been doing very well in school. Sometimes a little slow to do his work & a little too 'chatty' on occasion but no flat out refusals to do his work, which is a big improvement from last school year.
We went to the doc's office Friday for counts, ANC 3665, spinal tap & chemo. He was a very brave little boy while they were putting in his IV and did very well during the spinal tap. Spinal fluid looks clear according to his oncologist. Yeah! So, he started taking his steroids yesterday & I'm waiting for the 'eating machine' & 'mood monster' to arrive. But, we're used to it by now, so we will survive. (Thankfully, it's only one week every 3 months.) Next Thursday afternoon, we'll go back to the office for counts & Collin will officially have one year to go! YIPPEE!!
Meanwhile, my mother has been doing great! She did not need dialysis at all this week. She will go to the kidney doc next Thursday and we'll see what he says happens. Yes, my mother is out of the hospital & at home in her little house! Thank God! She's very weak & using a walker, but she's very happy to be back in her own space. She's staying in her place this weekend since neither Jay nor I have to work and are here to help her out. She will be staying at my grandparents' house during the week. She will also be getting visits for bloodwork from a visiting nurse & physical therapy as well. I can't tell you all how thankful I am that she is alive and home with us. I don't doubt for a minute that we have more than a few angels watching over us, here on Earth and in Heaven above.
As for Jay & I......he's been very busy with work, as usual. I started back at work in the kitchen at school last Monday. It felt good to be there & back into some kind of 'normalcy.' It has made for a hectic week, between working, visiting Mom before school let out, back to get Collin, back to visit Mom w/Collin and, finally, home to take care of him. It's made for a bit of craziness but we've survived, all of us. :)
This week also looks to be a bit busy......we'll go over to the grandparents' house for dinner & to deliver my Mom tomorrow. I work on Tuesday, after which, I have to go to see the lawyer who handled Mom's previous application for disability to get her files. Mom, grandpa & I will be meeting with an advocate to help with Mom's filing for disability benefits in Dade City on Wednesday. Thursday, I will be helping to clean some furniture on my grandparents' porch & then taking Collin to the doc in the afternoon. Friday, I have to work & be home in time to meet the delivery people who will be delivering a new bed and recliner for my mother's house. Whew! Just typing it is making me tired!
Hope you all enjoy a less hectic week than I am looking forward to & have a safe, enjoyable Labor Day!
Love, Shanon
Saturday, August 24, 2002 at 08:50 AM (CDT)
Hi! Well, things continue to look good. Collin had a good week in school & we went to the docs office twice this week. Once for counts, the second for the methotrexate level. His counts were good: ANC 6600 on Wednesday, 6400 on Friday. Collin had been sniffling early in the week & off & on for the previous week. I thought his allergies might be flaring, since we haven't had rain in over a week, and started him back on his allergy meds. That seemed to help a bit, but on Wednesday the doc looked in his ears and they were just a little bit red. Not totally sure that it's an ear infection, but, with a white count of 8.4 (which is a little high for him) it's more than likely. So, he started on some antibiotics. Still has the sniffles, but we'll see what happens. Other than being a little bit tired, he's been in very good spirits at home and school.
My mom continues to amaze us all. A week ago she had just come off of the ventilator and couldn't even lift her arm to scratch her nose. Over the course of this week, she has started to feed herself, with some help, and stand on her feet for a minute with the aid of the physical therapist. She has had dialysis twice more this week and is tolerating that very well. Still in a 'wait and see' mode as far as kidney functioning goes, so please continue to pray. The docs (she has about 8 of them!) are all very happy with her progress and at least one thinks that he'll be able to send her home in another week or so....no rehab center....as long as she continues to gain her strength. I'm so very proud of her & thankful that she is still here.
The only 'bump,' so to speak, is a lump that they noticed on one of Mom's kidneys when they did the CT scan on her when she first went into the hospital. They are now starting to investigate that. I am hoping and praying that it will turn out to be nothing more than a benign cyst or something similarly harmless. Again, we are taking it a day at a time and we will see what happens.
If anyone would like to call Mom, she does have a phone in her room. Her voice is a little raspy, but she'll tell you if she's getting tired. The hospital number is 352-589-3333. She is in room 250. She can also receive mail there, if anyone wanted to send a card or note. The address is:
Florida Hospital Waterman
Dawn Kuhn / Room 250
201 N. Eustis Street
Eustis FL 32726
Thank you all again for your love & support. I don't know what I'd do without you, but am very glad that I won't have to find out.
Love, Shanon
Monday, August 19, 2002 at 12:26 PM (CDT)
Hello, friends! I'm sorry it's been so long but it has been a very rough week or more. As you know, my mother went into the hospital almost two weeks ago. At one point, it looked like we might lose her. But, prayers are answered. Don't ever doubt that. My mother made it through the worst part & is now off of the ventilator, breathing on her own & says she wants to go home. Thank God! It will be some time before that happens. There are still her kidneys to worry about. We don't know yet how much damage was done to them. She has had dialysis four times since last Tuesday and has done very well with it. But, we will take things a day at a time. She is also very weak as she has been lying there for almost two weeks with little or no movement. She did start some physical therapy on Sunday, stretching & range of motion, so we are heading in the right direction. Today, she will be getting a scope of her lower intestines as they have seen some bleeding in her stool. Hopefully, whatever it is, the doctor can take care of it. I'll know more later when I go to visit her. I want to thank all of you for your love & support and especially for your prayers. They have been heard! Please continue to pray for my mother as the road to recovery will be slow & trying at times.
Collin started kindergarten last Tuesday & had a great week! He looks so grown up in his 'uniform.' I'll send a pic as soon as it has been developed. He has dealt very well with everything that has been going on & has seen his 'grandma nurse' a few times. Yesterday was particularly sweet as it was the first time he has seen her since she has been conscious. It was a beautiful moment.
He went for counts last week. ANC 2100. They doc has increased his 6mp & we go back for counts on Wednesday. They want to take a methotrexate level after his meds, which means a needle stick. I would rather the office do this than a lab, so we'll go Wednesday & check counts. If they are OK, he'll take his methotrexate on Thursday & we will go back to the clinic on Friday for the level to be drawn.
Collin got to spend this past Saturday night with Aunt Pam & Uncle Jack, along with Aunt Pam's brother, John, & his wife, Brenda. Everyone had a great time & I think all were pleasantly exhausted.
I'll be in touch later this week to let you know how things are going with Collin & my Mom.
Thanks again......I love you all!
Shanon
Saturday, August 10, 2002 at 01:54 PM (CDT)
Sorry it has been so long, but this last month has been absolutely crazy. My grandparents were both in the hospital for bronchitis for a week last month, then helping them get settled back in at home & do errands for them. They are back on their feet, but we have a new problem. My mother was admitted to the Critical Care Unit at Waterman Hospital in Eustis last Wednesday. She has Lupus, has had heart valve replacement surgery (two years ago) and now has some infection (they have yet to identify it) that has caused her to go into renal failure & even more worrisome, septic shock. So, here's what's going on now:
Collin had his check up today. ANC is 1800, which is good. So, we started his oral methotrexate this afternoon. He's a little tired, but in good spirits all things considered.
Not much new with my Mom. They don't know exactly what type of infection they are dealing with. We do know that nothing grew from the blood or urine cultures that they took, so it doesn't seem to be bacterial. They are giving her a lot of meds right now. Some for the infection, some for the septic shock, some for pain, some for sedation & some for getting her blood pressure up. A ray of hope that I am clinging to: she is doing some of her own breathing (the respirator was only put in to assist & she is triggering some of the breathing), and when I left tonight to come home, I told her that I love her & she turned her head toward me. It may not seem like a lot, but it feels good to know that she's in there & can hear me. Oh, and her blood pressure was inching up a little. Not a lot, but they did tell us that it would be 'baby steps' for her to get through this, so it's a start.
Thank you all for your prayers & support. I don't know what I'd do without you. I love you all & will post a note whenever I can or if something new comes up.
Love, Shanon
Monday, July 15, 2002 at 10:53 PM (CDT)
Hi, Everyone! I hope you all had a good week & a great weekend.
Things are starting to get back into a groove around here. Jay started feeling better in time to go back to work last Monday. (Isn't that the way it goes??)
I have been unpacking a bit here & there, but my main project right now has been to finish the 'unfinished' laundry room. The windows needed to be sealed (better than they were), wall joints needed to be sealed, walls needed to be filled/spackled & the whole room needs to be primed & painted. A good portion of it was left open, so Jay finished that out for me this weekend. Why did I start with the laundry room, you may ask? Well, there is a lot of shelving & I will be storing a lot of stuff in there. It made sense, at least to me, to finish it now, before I start putting things away, rather than later, when I would have to move everything to do what I'm doing. Hopefully, I will have the room primed tonight & be able to paint it tomorrow. Then I can really dig into the unpacking.
Collin has been pretty good all week. (Other than being my 'shadow.') But, I find things for him to hand me, get for me, etc., so that he feels he's helping me. We've actually been having a pretty good time.
He went to clinic on Friday. I was not happy!! Since the removal of his central line, Collin has gotten finger sticks for his counts & needles only for LPs. Well, when we arrived on Friday, the nurse tells me that they need to do a needle stick to get enough blood for a liver function test. If they had told me this after the previous visit, I would have put Emla cream on the insides of his arms so that he wouldn't feel the stick. I took a moment & explained to Collin what they needed to do. He was not happy! I got him calm & the nurses came in, one to draw, the others to hold him still if need be. Well, he screamed the whole time. They started to get some blood from the vein, but it blew. So, now they have to try the other arm! I talked to Collin again and explained that sometimes when you're crying & upset, the veins will constrict and they won't give up the blood. He asked me to blindfold him before the stick. (Luckily I keep a bandana in my purse for this reason.) I managed to get him to stay calm & take deep breaths with me while the nurse did the blood draw. He didn't realize that the needle was in; he was busy breathing. When the nurse was all done, he looked up at me & said, "Can I cry now, Mommy?". Do you have any idea how small I felt? Of course, I told him to go right ahead. He did, for about a minute. Then he was ready to get the check up over & get some lunch. (He was hungry!) He amazes me with his resilience.
Anyhow, sorry I dragged on a bit, I was just very frustrated. Collin's counts were good, ANC 1900. This was his oral methotrexate weekend, so his appetite has been on a slide but should return in the next day or two.
For those of you who pray and those who don't, I would ask that you keep a few very special young adults in your thoughts right now. Matthew is 16, had a bone marrow transplant in March and relapsed. He is at home with his family now and should be heading home to God's arms soon. He's been very brave & strong throughout his battle.
Also, recently relapsed is Kristin. She's a beautiful 18 year old who received a bone marrow transplant in January & they just found out about the relapse. They have not given up hope yet!
These are both wonderful children, with amazing strength & faith. Their families are very loving and supportive. They need all of the prayers & good thoughts that come their way. Peace for Matthew & victory for Kristin!
And, as always, say a prayer that Collin's remission lasts forever!
I love you all & thank you for always being there.
Have a great week!
Love, Shanon
Saturday, July 06, 2002 at 09:37 PM (CDT)
WOW! We had the most amazing time! And all I can say, over & over again, is WOW! Let me start at the beginning.....
Last Sunday morning, a big, beautiful, almost brand new, limousine pulled up in front of our house! Collin was a little nervous at first, but once he climbed inside, he was loving it! The ride to the ship was wonderful. (Of course, Collin & I sat on the floor most of the ride, building a LEGO kit!) We were dropped off right in front of the terminal & stared in awe at the ship we were about to board. It is huge!
We got checked in at the terminal, went through security & boarded the ship with very little difficulty. (Finding our room, wasn't too hard either, thankfully.) We were on Deck 2, forward on the starboard side. Our room was great! We walked in & there was a porthole straight ahead. (I was expecting some little 6" hole, but I was wrong! It was a large window, looking out onto the ocean. Big enough for Collin to stand in!) There was a queen size bed in the middle of the room, a couch (we would learn later that it also served as a twin bed & that a bunk would be dropped down from the ceiling--Collin loved that!), a TV, and plenty of drawers & storage. Right in the middle of the bed was a 22" stuffed Captain Mickey with a card welcoming Collin on board. It was amazing....from that moment on, Collin was treated like royalty! Later in the evening we received a note, informing us that Disney was offering us free snorkel, bike & float rental at their island, Castaway Cay, on Wednesday. Shortly after it arrived, Maria, the Make-A-Wish liaison, called to check on us, asked if we needed anything & if we had received her note. Very nice lady!
We arrived in Nassau on Monday, Collin's birthday. After breakfast, Collin opted to go to the Oceaneers Club & hang out with the 5-7 year olds. Mom, Jay & I decided to go to the Straw Market, a local flea market. We came back & had lunch with Collin, then got dressed to go on our Blue Lagoon Dolphin Encounter.
Oh, what an experience! I can't find words enough to describe the feeling of being up close & personal with one of those beautiful, gentle, friendly creatures. We met Shawn, who also happened to be 6 years old (Collin liked that) and a movie star. He was in one of the Mary-Kate & Ashley Olsen movies. They took a family photo of each of the family groups, with one person getting kissed by the dolphin. Unfortunately, Collin didn't want to be the kissee, so he drafted me--I was soooo bummed, NOT! After those pics were taken for each of the families sitting around a square pool approx. 15 X 10, they took ten people at a time to come back in & play, hug, kiss, touch & feed Shawn. I don't know who had more fun, Collin or me. But, we all had a great time, bought some of the pictures & the videotape of our encounter. (Check out the photo page - there's a pic of Collin getting his hug!) If you ever have the chance, do it! You'll never forget it!
Afterward, we went back to the boat & got ready for dinner. Let me tell you, the food was wonderful! We especially liked the fact that we could try new foods. Mom & I tried escargot. (An experience I will skip in the future! It wasn't horrendous, but I'll stick to clams....they're cheaper & taste about the same!) Jay got to try rack of lamb--which he thoroughly enjoyed.
Anyway, after dinner, Collin wanted to go back to the Oceaneer Club. So, Mom & I took the opportunity to raid the gift shop so that we could have a little birthday party back in the room later. When we returned to the room, there was a note from our MAW liaison wishing Collin a happy birthday & a tray of little cakes, chocolate covered strawberries & a small chocolate replica of the ship w/M&Ms inside! Just before bed, another note was slipped under our door. It was a birthday card with a picture of most of the characters & signed by them. Very Cool!
On Tuesday, we arrived in Freeport. We had all decided to just hang out & enjoy the ship. Collin wanted to head back to the club for a while & have us pick him up for lunch. Once again, the adults were dumped & decided to go across the street from the boat to another Straw Market. On our way back to the boat, the sky let loose & we all got drenched!
We did have rain off & on Sunday thru Tuesday, but for the most part it wasn't bad. In my opinion, it was beautiful! A little cooling rain, warm breezes & sunshine peeking through the clouds. We spent most of the rest of the afternoon, on the ship & in the pools. Our little guy is getting to be quite the fish & swimming very well!
That evening we received another note from Maria, inviting us to a special meeting with the captain & a special 'guest' on Wednesday afternoon.
We arrived in Castaway Cay Wednesday morning. What a paradise! Palm trees, sun shining, ocean breezes & lots of beach! It took my breath away. Once again, Collin went off & left us alone. (He was having a blast!) So, we decided to pick up our snorkel equipment & hit the water. They have a lagoon for snorkeling, with sunken treasure & rocks....all kinds of beautiful fish. (I'm hoping some of my pics come out. The water was a little churned up with so many other people swimming around.) And a submarine, which looks like it came from 'Twenty Leagues Under the Sea.' We three were pleasantly exhausted after our tour of the lagoon & Collin was ready to be picked up. So, we grabbed him, had some lunch, did a little shopping & spent the afternoon on the boat, swimming. (When we returned to the room, there was a plate with two large cookies and two containers of milk with a note for Collin. They hoped he'd enjoyed his day & here was a snack to hold him until dinner.)
We went to our 'Meet & Greet' with the Captain later in the afternoon. This was a special meeting for MAW families only. There were 12 other families there. And, Captain Mickey! I was very worried. The whole trip, Collin hadn't once wanted anything to do with the characters. When they walked up to or near us, he would pull away. I told Collin that Mickey was going to come over & meet him. That they would probably want a picture or two of him with Mickey. As I talked, he just kept shaking his head & saying NO. I finally resorted to bribery! I made him a deal, shake Mickey's hand, take a few pictures (and smile) and I would buy him a toy after dinner, PLEASE! Toy was the magic word! He agreed. Well, when Mickey came over to us, Collin shook his hand, and, to all of our amazement, he reached up & hugged Mickey! It was soooo sweet! He just kept smiling & hugging him while Mickey hugged back & made kissing noises! After Mickey made his rounds, the captain arrived & they took pics of the kids with both Captains; then the families with them. It was a lot of fun! Later that night, we would get to our room & receive another note along with copies of those pictures!
Thursday morning we arrived back in Florida. We all had a great time & were exhausted. I think even Collin dozed off in the limo on the way back home! It was a once-in-a-lifetime experience! We'll never forget it!
We had a birthday party for Collin later that day, with my grandparents in attendance & a dinner of burgers and dogs. It was a very long 4th of July! But, it was a great day!
Jay had Friday off, so we all went to clinic Friday. Collin's counts were good, ANC 1100, and he checked out just fine.
We're all still trying to get back into the swing of things. I still haven't gotten my land legs back....feel the boat rocking under me as I type. :) Unfortunately, Jay seems to have a cold. Last night he was running a low-grade fever & today he's pretty much slept off & on all day. Summer colds really aren't fair! He's congested & exhausted.
Well, back to reality & unpacking our house. Ugh! I'll talk to you all again next week!
Love, Shanon
Tuesday, June 25, 2002 at 09:52 PM (CDT)
Hey, Everyone! We haven't quite dropped off the face of the Earth, just yet. LOL
It's been a busy couple of weeks. Jay's been working a lot during the week & on the weekends somewhat. While he's working, Collin & I have been packing one house & unpacking the new one. What a job! Who knew how much stuff could be accumulated over the course of 5 years!
Anyway, we did get a much needed break on Father's Day. Jay's sister, Heather, and her boyfriend, Andy, along with his parents came to Florida, from Ohio, for a vacation. We went down and had dinner with all of them; then went swimming at the hotel for a while. We also got together with Heather and Andy later in the week. It was really great to see them! I hope they had a good time; I know that we did.
On to Collin.....we went to the doc last Thursday, to get counts checked. They were a little low, ANC 660. But, after just coming off of the steroids a week before, along with a chemo weekend, it didn't surprise me much. So, he's taking it easy this week, HA! (Under my feet is more like it!)
We had a visit from our Make A Wish volunteers today. They brought our tickets, spending money & information about our cruise. I can't believe it! We leave on Sunday, via limo no less - Collin doesn't know about the limo; we're letting that be a surprise. They also brought some balloons, gifts & a cake for Collin as an early birthday party. Collin had a wonderful time & is very excited about our vacation & celebrating his birthday on the Disney 'boat.'
So, that's the scoop for now! Collin goes back in on Friday to check counts. This is his oral chemo weekend, but I'm going to ask if we can postpone it until we get back. I'm keeping my fingers crossed. I'll drop you a note on Friday evening!
Take care & have a great 'hump' day!
Love, Shanon
Wednesday, June 05, 2002 at 11:13 PM (CDT)
I'll try to be short.....We went to the doc yesterday. They called the IV team as soon as we arrived. It took over an hour for them to get to us, but, after some fussing from Collin, and with the help of a blindfold :), they got the IV into his hand in one shot! YEAH! From there it was a smooth ride to get the spinal tap done. Collin barely flinched & slept through most of it, as well as having the stitch removed from where his line used to be. Talked to the nurse later in the day & his spinal fluid is ALL CLEAR! Thank God! His counts are great, ANC 2300+. Collin's ears were all clear, too.
So, that's the scoop. Collin started on his steroids this morning, so I expect the eating & mood swings to start in another day or so. (Lord, give me patience!) We go back to the clinic next Wednesday for counts.
On the house front: I'm packing boxes (slowly) during the day & Jay is loading them into his car & dropping them by the house after work. Collin's room is painted. Hopefully, we will get his floor done on Friday night or Saturday morning & see about moving some more things. I'm hoping that we can get the majority of 'things' over the next week & next Saturday move the furniture. We'll see.
Thanks for praying for Collin, it is definitely heard. Please pray that his remission continues and that his treatment goes smoothly.
Love, Shanon
Friday, May 31, 2002 at 05:45 PM (CDT)
Hello! Things have been a little busy this week. The biggest problem is, Collin has a cold. His sinus's have been draining big time & he's been coughing pretty bad most of the week. (Thankfully, though, he's been in very good spirits & not letting it slow him down much.)
We went to the doc's office today. He was due for a spinal tap & chemo. This was to be the first 'test' of Collin getting an IV since his line had been removed. Total flop! We were all set this morning. He let me put the 'magic' cream on his arms for the IV. We got to the office, checked his weight (lost a pound this week) and checked his height (grown 1/2" in two weeks!) then removed the cream from his arms. The nurse explained what we were going to do and he started crying. It was awful! My mother was hugging him & he wanted me to cover his eyes so he couldn't see. The nurse tried to start an IV twice, once on each arm, and it didn't work. Collin was a real tough guy though. He didn't try to pull away and kept asking 'Is it in yet?'. So, thankfully, he couldn't really feel anything. The nurse decided to call the IV team from the hospital, hoping that they could get the IV in place.
Meanwhile, the nurse practitioner comes in to check Collin over. Looks in the ears and, guess what? Ear infection, YUCK! Bring on the antibiotics. She tells the doc. The doc comes in to check. (Poor kid!) He decides that, after the trauma of the two failed IV attempts, the ear infection and the cough -- due to drainage -- it would be OK if we wait a few days for things to clear up. So, the plan is to go back on Tuesday for the spinal tap. They will call the IV team as soon as we get there and let them try. If they have difficulty getting the IV, the doc says he wants to put a line back in Collin's chest. It made for a very long, stressful morning for all of us. (Especially my Mom, as she had just gotten off of the 12 hour night shift at work at 7AM this morning.)
After the docs office, we went over to the hospital to see Uncle Jack. He had a triple bypass on Tuesday this week. He is doing pretty well. They moved him from ICU to CCU last night. If he continues to do well, they will send him home on Sunday or Monday.
The plan for this weekend: Get Collin's cold cleared up & work at the house. I'm almost done painting Collin's bedroom. My next task is to lay a parquet floor. (Wish me luck!) Jay & my Mom will be working on laying the vinyl tile in the cottage. Then we (me, Mom & Grandpa) will work on the plumbing and electric for her kitchenette. Once these few things are done, we will put in her cupboards and be ready to move in. I can't wait!
Hope you all have a great weekend!
Love, Shanon
Sunday, May 26, 2002 at 10:57 PM (CDT)
Hi, Friends! I'll give you fair warning now.....this is a long update because it has been an amazing week! I'll start at the beginning...
Monday night was Collin's 'promotion ceremony.' He has graduated from preschool and will be attending Kindergarten next August! It was a wonderful evening & Collin behaved very well. The PK4 & PK3 classes sang some songs. It was very sweet. When Mrs. Hood called Collin's name to receive his certificate, I had tears in my eyes. (I cried harder later on when I gave Mrs. Hood a hug.) Our little boy has been through so much & is growing so fast. I'm so proud of him!
The rest of the week was pretty quiet. Collin went to school on Monday, Tuesday & Wednesday. On Thursday afternoon, we went to Orlando to get his monthly breathing treatment. Afterward, we had lunch in the hospital cafeteria. Then upstairs to the medical building for his doctor's appointment. He still cried a bit, but took his finger prick very well. His counts were great! ANC was 3300, so the doc decided to 'bump' his 6mp dose back up to 100%. This weekend was his oral methotrexate and, as usual, he has done fine. Not even a little bit tired or nauseous.
Next Friday will be rough on our little guy. He is due for his spinal tap w/methotrexate, vincristine and starts on a week of steroids. This will be his first 'test' of life after having his line removed. He will need an IV placed for him to receive his sedation medication and vincristine. (Please say a prayer for him to have strength to deal with this and that the spinal tap results come back 'all clear.')
For the really exciting news: On Friday morning, we did a final walkthrough and signed the papers for our new house! We have bought a home in Eustis! (We haven't told too many people because, Lord help me, I was afraid to jinx things! ) It is a 2 bedroom, 2 bath home with a lot of room, a screen porch and a fireplace. It also has a detached garage that has been transformed into a 2 room 'cottage' with a bathroom. The cottage needs some things done to it to make it livable (paint, tiles and a kitchenette), but my mother wants to be close to us and this is perfect for her! (And us. It makes me feel good to have her close by.) When we first saw this home, we all fell in love! I can't describe it any other way than to say that it has a lot of character.
So, our holiday weekend has turned into a celebration & a lot of work. The house itself is ready to be occupied. Since Friday, we have been working on the cottage (Jay, mostly) and painting what will be Collin's bedroom (Collin & I). He and I sat down a few days ago and drew/colored pictures of what he wanted on his walls. To give you an idea: He wants 3 of his walls to be 'sky' blue with a sun in the corner & fluffy white clouds on them. The fourth wall will be 'bedtime' blue, with the moon, stars and a planet or two. (We're still figuring out what planets!) The house is fully carpeted, but due to Collin's allergies we are going to pull up the carpet in his room and lay down a parquet floor. (Luckily, Home Depot was having a sale this weekend!) Once the walls are done, should be tomorrow, that's the next task.
We hope to be moved in by the middle of June. Before we do move in, I will send out an email with our new address & phone number.
I almost feel overwhelmed! We have had a week of beautiful weather and exciting changes. I have definitely felt God smiling down upon us lately.
I hope you all have a wonderful Memorial Day and a great week! I'll post again next week!
Love and hugs, Shanon
Thursday, May 16, 2002 at 09:48 PM (CDT)
Hi, Everyone! I think I mentioned last week that Collin's central line was acting up. Well, when I went to flush it last night (I push in saline solution daily so no clots are formed) he screamed & cried. He said it was poking him.
I called the clinic this morning & told them what was going on. They told me to bring him in at 11 am. When the nurse tried to flush it, the same thing happened. He started screaming & crying. It was awful. We finally saw the nurse practitioner. She checked him over and felt the area where he said it hurts. Her suspicion is that a clot managed to form and that the line now has a leak in it, causing the fluid to enter tissue instead of the vein. She sent us over to see the doc who put the line in place last year when Collin was diagnosed. He tested it again. Again, pain & tears. So, Collin is going to have outpatient surgery tomorrow at 2 PM. The doctor is going to remove the line.
It is a short procedure & pretty much noninvasive. (I think they make a small incision in the skin where the line exits his chest so that they can pull the line out.) The doc isn't worried. Of course, I am. I was miserable when they took him away to surgery last year. I don't expect tomorrow to be any easier. Thankfully, my mother will be with me, so I won't be alone.
At this point, we have opted not to put another line or a port back in place. Collin only has 5 more IV chemos over the next 14 months. We are going to try to get him to adjust to weekly finger sticks & an IV every 3 months.
His counts were good today, 2300. Other than the line, he is doing great & full of energy.
So, that's all for now. Of course, there are a dozen other things going on right now, but I will talk about that another time. Say an extra prayer that all goes smoothly, please. I'll drop a line tomorrow evening to let you know how things go.
Love,
Shanon
~~~~~~~~~~~~~~~~~~~~~~~~~
**UPDATE** 5/17/02
Friends & Family~
Thank you all for the support & added prayers! Collin had his surgery today. Everything went nice & smooth. He has a bandage on his chest that will stay for a few days. Watching him right now, running around the house & being his lovable self, it amazes me that just a few hours ago he had surgery. He's my hero! (He did ask to keep the line - he wants to measure it to see how long it is! Eww!)
Thank you all for being there for us! Have a great weekend!
Love, Shanon
Sunday, May 12, 2002 at 12:31 PM (CDT)
Good Afternoon and.......
Happy Mother's Day!
I hope all of you are having a wonderful weekend! Mine has been pretty good so far! Yesterday, I filled up Collin's little pool & he got to play! He had a great time & it was a great day! 93 degrees, no humidity & strong breeze...beautiful!
Collin's week was pretty good. Still testing us, but realizing that there are boundaries. Things are winding down at school. Collin only has two weeks left. (I think he spends more time on field trips than at school during the last week of the school year.) On May 20th, he will have his preschool promotion ceremony. I still can't believe he's almost 6 years old! He's growing up soooo fast & in so many ways!
Mother's day shipments are finally over for Jay, but the next task is getting everything in order at the new facility. Almost all operations were transferred to the new location on Thursday & things are still a little crazy, but the long hours should be over for the most part now.
Collin had his post-op follow up with the ENT on Tuesday. She said the tubes have healed nicely & that his hearing is normal. She also said that he can swim in chlorinated & salt water without ear plugs as long as he doesn't go under more than 3-4 feet. Not likely....he doesn't care much for getting his head under water yet. :)
We went for weekly check of counts on Friday. His line seems to have a blockage of some sort that will flush in fluids, but not give blood. So, to get blood for the CBC we had to do a finger prick. He had never had one, so he wanted the nurse to do one to me to see how it worked. OUCH! Those little things hurt! But, I did it without flinching. Unfortunately, Collin didn't fare as well! I had to hold him down while the nurse got what she needed. Poor baby! His counts were great....ANC 3172. We will go back on Wednesday morning to see if we can get blood from his line. If not, they will put in some medicine to help clear the line of any clots. Then, we will go back Thursday afternoon to remove the medicine and try again for a draw. If they can't get any blood after that, I don't know what happens. I'll let you know.
Have a great week!
Love, Shanon
Friday, May 03, 2002 at 11:32 PM (CDT)
Yes, it has been a tough week! Collin has been pushing buttons like only a child can do! All week long at school with his teacher & at home with me.....it's like he's suddenly decided that he's going to see just how far he can push us all! I hope it's just a phase he's going through. And, of course, it makes it that much harder to stay mad at him when he climbs up in my lap, lays his head on my shoulder, places a hand on my cheek & looks up at me with his big brown eyes and says "I love you, Momma." At that moment, he is the most perfect little boy in the world and I thank God for him!
It's been a busy week....I worked Monday, Tuesday & Wednesday. I don't think Jay has gotten home earlier than 9:30pm on any given night this week. As I write this, he still hasn't gotten home tonight. Hopefully, things will start to quiet down in another week. Maybe!
Collin & I went to the clinic today. His counts are good, ANC 1296. He was running around & full of energy at the office today. He had all of the girls laughing at him. We go to the ENT on Tuesday to have his ear tubes checked out & his hearing tested. Hopefully, things will go smoothly. We go back to the clinic for counts next Friday & then it's another weekend of oral methotrexate.
The school year is starting to wind down a little. The kids at school seem to be chomping at the bit for it all to be over. School ends on May 24th. Collin will have a pre-K graduation on May 20th. I only have two more weeks of working in the kitchen. Then I get a week off before I start helping out with the school's summer camp program. I will work on Monday & Tuesday each week and Collin will attend the camp. I think it will be good for both of us.
I hope you all have a great weekend & I will write again next week!
Love, Shanon
Friday, April 26, 2002 at 06:37 PM (CDT)
Good evening, everyone! I hope you had a nice week. Collin & I had a very busy week. Collin, of course, had school which included a field trip on Tuesday to Uncle Donald's Farm. A local farm & petting zoo. All kinds of neat stuff! I went on the field trip to help supervise....ha! I got exhausted just watching the kids run around! We saw at least a dozen varieties of chickens & rabbits, got to feed a baby goat, and pet a donkey, pig, goat, chicken, rabbit & a baby duck. The kids were also allowed to milk a nanny goat, unfortunately Collin wanted nothing to do with the experience! Then we got to go on a hay ride out into the pasture where we stopped & the cows & bulls came up to the wagon to eat hay right out of our hands! The kids had a great time & were pleasantly exhausted after having lunch at Burger King.
We went to the doctor's office today....everything is great! Thank God! Collin's counts are good, ANC 2223. So, we're all set for his oral methotrexate this weekend. They also drew blood to check his liver functions. I won't get the results until Monday, but I expect them to be OK.
Not much else going on....weather is hot, hot, hot! Mid-80s all week long & not a drop of rain. My grandparents are both doing well, no new ailments, just the usual aches & pains. My Mom is hanging in & working hard.
Oh, I just thought I'd share with all of you the little bit of mischief that Collin pulled in school. After the kids were done on the playground yesterday, they came in to go to the bathroom & clean up before they left school. Well, our little 'prankster' decided to lock both of the stalls in the boys bathroom & turn out the lights! He would admit to Miss Kelly that he turned off the lights, but wouldn't say if he locked the stalls or not. He did, once asked, go under & unlock them. Later, when I picked him up after school, Kelly was telling me what happened while Collin was strapping himself into his car seat. I looked at him and asked who locked the stalls. He looked at me, slightly sheepish but with a gleam in his eye & a giggle ready to burst, and said "It was me." It was soooo hard to keep a straight face!
Have a great weekend! Love & hugs to all of you!
Love, Shanon
Saturday, April 20, 2002 at 12:36 PM (CDT)
Hi! I hope everyone is enjoying the weather lately! Down here it seems like we've decided to skip Spring altogether & get straight to Summer! We've had the a/c on all week and it hit 88 today! WOW!
Collin started last Saturday afternoon with the sniffles! Oh boy, was I a nervous wreck. This was the first 'test' of whether or not the ear tubes were going to do the job they were meant to do. Well, I am happy to report, they did!!! He DID NOT run any fevers & he DID NOT get any ear infections! Yeah! I did keep him home from school on Monday & Tuesday just to be able to keep a close eye on him, but he did just fine. We went back to school on Wednesday and did not have any problems. At this point, he does have a lingering cough but the doc said that his lungs are all clear.
Meanwhile, we went to the clinic today for counts. Everyone was very happy to see him jumping around & full of energy. His counts were good, ANC 1512, so it would seem that the increased dose of 6mp has not had any adverse effect on him. We will maintain the current dose & increase again if his counts stay high for several weeks.
Next weekend will be his oral methotrexate weekend. The doc also wants to test his liver function levels to make sure that his liver is performing as it should be. These meds are hard on the body & particularly the liver. As a result, they monitor those levels closely.
Everything else is status quo around here. Jay is so busy, we haven't seen him too much. But, until Mother's Day is passed, I don't expect that will change.
I hope all of you have a beautiful weekend! Talk to you next week!
Love, Shanon
Saturday, April 13, 2002 at 10:45 AM (CDT)
Good Morning, everyone! Collin has had a pretty uneventful week. Not too much going on. We did get some much needed rain yesterday & may yet see some more today. Jay has been pretty busy with work & I worked a few days this week myself.
My grandmother went into the hospital a week ago Friday for what they thought were kidney stones. She had been feeling nauseous & had a pain in her side, back. Well, they released her on Tuesday as they didn't see any stones on the dye test. Apparently, she just had a bad cold/flu? Nobody said what they thought was wrong with her. Just sent her home. Sometimes, docs & hospitals can be so darn frustrating!! At least she is at home, where, hopefully, she'll be able to get some rest & get her strength back.
Collin went for his weekly clinic visit yesterday. His counts were up, ANC 5776! The protocol calls for the ANC to be between 1500 & 1000 (I think), so the doc increased one of his meds, 6mp, by 15%. He had reduced it by 25% a few months ago due to continually low counts, but he was also going thru all of those infections at the time which contributed to the low counts. Now that the tubes are in, Collin hasn't had any colds, infections & hasn't even needed his allergy meds. So what we're seeing lately is 'normal' counts. (I hope that makes some sense!) The doc said all of his other counts are good, so we'll see if this makes a difference. If his counts are still high for a couple of weeks in a row, they will be increased again. This is Collin's oral methotrexate weekend, so I expect the counts to come down a bit. We'll see how much, next week.
You may remember that Collin was having early morning nausea w/vomitting and occasional tummy aches for no apparent reason. We originally attributed the vomiting to the flu bug we had along with the methotrexate. Well, last week the doc suggested that it could be the result of gastritis, acid in the stomach, as those levels are at their highest from 1am to 3am. He suggested that we try to give Collin tums or maalox & see what happens. Well, Collin had no interest at all in trying either of those, so, with the docs OK, I started giving him liquid zantac once a day. It worked. He had one episode of early am nausea & no tummy aches this week. So, Collin is now taking zantac once a day & has gained two pounds this week!
So, that's it for now! Hope everyone has a great weekend & week ahead!
Love,
Shanon
Monday, April 08, 2002 at 10:15 PM (CDT)
Hi, All! Sorry that I'm a few days late, but here it is.
Collin had a fair week at school. A few difficult moments with him being stubborn w/the teacher but I think those have worked out for the most part.
Friday was our doctor day. Counts were good, 1700. If his counts are over 1500 again next week, the doc will increase Collin's 6mp by 10%, I think. They try to keep the ANC between 1000-1500. Awhile back, they reduced his original dosage by 25% because his counts kept going low. So, he's only at a 75% dosage right now. We'll see what happens this Friday. Other than that, the doc is happy. Collin's tubes seem to be healing just fine & (knock on wood) doing what they are supposed to do. :)
We went to the Lake County Fair Saturday night with my mother & we all had a great time!
Not much else going on, thankfully! I'll write again this weekend!
Have a great week!
Love, Shanon
Sunday, March 31, 2002 at 12:12 AM (CST)
Hello & Hoppy Easter! Collin got his tubes in & the oncologist looked at them on Friday, said the ear drums looked great! Nice & clear! His counts were good & he is full of energy! (And, Mommy's whipped, trying to keep up!) :)
He woke up a little while ago & almost busted the Easter Bunny! Thankfully, he wasn't very adamant about staying up, though he was a bit excited when he saw an 'egg' in the living room. OOPS! But, sleepiness & the agreement that he could go sleep with Daddy won out.
We go back for counts on Friday & look forward to a 'normal' week ahead.
Happy Easter & May God Bless You!
Love, Shanon
Friday, March 22, 2002 at 08:57 AM (CST)
Good Morning, All! I hope that all of you are having a nice week & that you will have a beautiful weekend.
We are all feeling like ourselves again, thankfully! Collin's tummy was still tender from the stomach flu/bug that we all had & it seems that his oral methotrexate hit him a little harder last weekend than usual as a result. Since we have entered this phase of treatment, he hasn't needed Zofran (anti-nausea medicine) but this last week he has had some vomiting so we've been giving him the Zofran to combat it. Seems to be doing the job. It has been a nice week over-all as Collin & I are on Spring Break.
We did have two doctor appointments this week. The first was on Tuesday to see the ENT about Collin's ear infections. He still had fluid in his left ear from his most recent ear infection, so the doc wants to go ahead & put tubes in his ears. It is a simple procedure & Collin's oncologist says that he will do fine & that it should make a big difference. The plan is to get them put in on Tuesday, next week. I ask that you say a prayer that he makes it through surgery w/out complications & that the tubes solve the problem of the ear infections. Thanks!
We went to the oncologist yesterday, for counts & general check up. No chemo this week. His counts are good (ANC 1023) & he has a lot of monocytes present, which means that his counts should be even higher next week. We don't want him neutropenic next week or no surgery. The onc is comfortable with having tubes put in Collin's ears & gave us a prescription for an antibiotic for him to take before the procedure as a precaution. We go back next Friday.
Today we are taking a 'mini-vacation' & going down to Orlando to spend the day/night with my aunt & uncle. (And, their 6 dogs....our dog, Weiner, loves to visit!) My Mom is also going to see a new doctor, a friend & former doc to my uncle. Hopefully, he will have some new ideas, directions to try in combating the constant fatigue & pain that she is in due to the Lupus & fibromyalgia. Please keep her in your prayers as well.
Have a great weekend & I'll drop a note next week!
Love,
Shanon
PS - The doctor said that Collin's spinal fluid from 2 weeks ago was ALL CLEAR! YEAH! Please, dear Lord, let it stay that way forever!
--------------------------------------
UPDATE: 3/27/02
Just a quickie! Collin got the tubes put in today. No problem. The doc said everything went smoothly. She did drain some fluid from his ears, but it was not infected fluid. Waking up after the procedure typically takes 30-45 minutes....well, our little guy was awake 15 minutes after the procedure & telling the nurses to make sure they put up the side-rails on his bed and talking about his 'Scribblers'. (Frozen popsicles) They all loved him!
Thanks for the extra prayers today. I know they were heard. We will see the ENT in 4 weeks to see how things look. Friday, we go to the oncologists office. I'll update again then!
Love,
Shanon
Tuesday, March 12, 2002 at 09:33 PM (CST)
Hi, everyone! Hope all of you are having a good week! We're hanging in, barely. Collin's week of steroids is over, thankfully! Poor little guy has been sooo obsessed with food, he couldn't concentrate on much else. Yesterday was his last dose. Last night he starts complaining that his ear hurts......oh no! That's not the worst of it, let me start at the beginning....
Most of you know, my mother works at a nursing home. Last Wednesday & Thursday, most of her patients were suffering from a stomach flu. Well, Friday night, it hit my mother HARD. And, good daughter that I am :), I was getting a few things for her, while minimizing my exposure. Suffice it to say, my tummy started feeling funny yesterday after school. Collin & I came home, had a little to eat & both fell asleep watching TV. Jay comes home from work, looking pastier than a ghost! He had gotten sick on the way home! So, Jay & I with the bug, Collin with the ear. I've bounced back for the most part. Enough to be able to take Collin to the doc this afternoon.
His counts are great (6600 ANC).....thanks to the steroids! But, his white count is up to 9.5, due to the ear infection. So, the doc says take antibiotics & do his oral MTX this weekend like normal. We are scheduled for a follow-up with Nemour's ENT on Monday, so maybe we'll be able to do something about his ears. If she has no suggestions, we have found an ENT Allergist in our area, whom we plan to see about the link between allergies & ear infections. So, we shall see.
Collin & Jay are both asleep right now, resting peacefully. I'm actually contemplating food....we'll see how that goes.
Take care & talk to you soon!
Love, Shanon
Friday, March 01, 2002 at 09:07 PM (CST)
**Monday, March 4, 2002 - Update**
Collin went to the doc today. Counts were up! ANC 1316....big change from 405 on Friday! So, he relaxed, took his 'sleepy' medicine & had his spinal tap w/chemo....no problem. Then he sleeps for about 1/2 hour afterward. Which is a good thing, because he needs to lay flat at least that long after the methotrexate goes into to the spinal canal so that it may travel both directions. When he woke up, he got his vincristine which goes into his line. And, we were all done. Doctor said the spinal fluid looked clear, which is good. So, we start a week of steroids....yippee! (NOT!) A week of mood swings that put most women to shame & food obsessions like you wouldn't believe! At least it only lasts a week though!
We don't go back until next Wednesday, so now it's back to work/school for both of us. Some normalcy, so to speak.
Have a great week!
Love, Shanon
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday, March 1, 2002
Hello! Well, as you know, Collin had the ear infection last week & the fever finally broke Saturday. It came back, lower this time (99) Sunday night. Called the onc & was told to let it be, call in am; call sooner if it hits 101. Also told us that all cultures drawn in the ER came back negative. Monday AM, still running 99. Call the office. They tell me to let it run. Sometimes it takes time for antibiotics to work. Call back if he 'deteriorates' or fever hits 101. Call in am & let us know how he is. Meanwhile, he's doing OK...running around a bit, but not quite up to par. Fever broke Monday evening & has not returned since. (Thankfully!) Tuesday he was feeling more like himself; giving me a hard time (for once, I'm glad) and playing like the little boy we all know & love. I did keep him home from school all week & we skipped the field trip. I just felt that with the LP coming up today, he should get all his energy & strength back.
We did go to clinic this morning. We were all prepared for the LP to happen. Counts are low...ANC 405. White blood count still rebounding from infection. No LP, hold meds. Right ear is all clear. Left is still a little red, but no fluid present. We go back on Monday, they believe his counts will be OK, to get the spinal tap/chemo done.
Talked with the doc for a little while about an article/site I found on the NET about a relationship between allergies & ear infections. (Of the last 4 infections he's had, only one has had a full-blown cold associated with it.) No specific allergy tests have ever been done to figure out exactly what his sensitivity is, so we are going to be referred to an allergist. Hopefully, we'll find out the exact cause & maybe find a med better than Claritin to help him out. (Draining is really bad right now. I think he may be sensitive to pine pollen ~ it's that time of year right now for us.)
While we were there, I kind of 'dumped' some of my feelings on the nurse practitioner. I've been a bit nervous lately, about the possibility of Collin relapsing. My fear was stemming from the feeling that we have been going through the same thing with colds/ear infections that we went through a year or so ago right before he was diagnosed. I'm glad I told her. She strongly told me that there is no reason to think that is the case. "Physically, he is doing Great! He looks good & there is NOTHING in the lab work to indicate a relapse." She did remind me that cancer kids are more susceptible to colds/infections due to the lowered immune system. But she couldn't stress enough how well he is doing. I have to say, a load was lifted off of my shoulders! Maybe, it was just the stress of the week getting to me. Along with the fact that I always get a little anxious when it comes time for LP.
Well, sorry if I rambled on a bit. I feel a lot better. I'll post on Monday & let you know what happens. (I promise to make it shorter!) Hope you all have a great weekend!
Love, Shanon
~~~~~~~~~~~~~~~~~~
Friday February 22, 2002 6:37 PM CST
Hi, Everyone! Collin's counts were low when we left for Cleveland last week, but he did have monocytes (indicating that the count would be coming back up), so he wore masks on the planes there & back. We had a great visit, got to see just enough snow to cover the ground & uneventful flights both ways. (We came home to 84 degrees...big difference after experiencing 30-50 all week.)
We got home this past Tuesday & have been busy all week. I worked on Wednesday & Thursday. Collin was supposed to go on a field trip today, but here's what really happened....
Collin went for check up yesterday, counts were great (2100). Look into the ears....they're red again! UGH! They gave us antibiotics & sent him home. Last night, at 6:30 PM, he spiked a fever of 101.5. I called the oncologist on call & he said to go to the ER. He wanted them to take blood for cultures (make sure there is no infection in his line) & give him a dose of heavy duty antibiotics. So, as soon as Jay got home from work, we turned around & drove down to Orlando. Thankfully, they have a pediatric ER in addition to the regular ER. As soon as I told the triage nurse who we were & what was going on, he took us right back into a room. Nurse came in & drew blood from Collin's line & started some IV fluids. Temp was 102. Finally, we were able to give him some Tylenol & he slept for a while. Doctor came in about 1 hour after we got there & checked him over. Nothing that the office didn't already know...ears red, runny nose. Counts had dropped a little bit, 1900, but he wasn't low. So, they give him the IV antibiotic & sent us home, told us to call the office in the am.
By the time all was said & done, we got home at 1:30 am. Put CJ to bed & then he got up at 3:30, wet, & wanted to cuddle with me & watch a movie. He was running a temp again, so I gave him more Tylenol & we fell asleep in my chair.
Got up at 9 am this morning, still glassy-eyed & had a fever (101). Called the office & they said to bring him in to give him more IV antibiotics. I told them we just woke up & that it would be a couple of hours before we got there. No problem, they said. Well, we got there at 12 noon & no one was there! Sign on the door said, Out to lunch -- back at 1:30! Oh, was I ticked off! Went back down & sat in the car for an hour & a half, Collin dozed off for a while.
We went back up & it was all I could do just to answer their questions. I was so upset that I couldn't trust myself to do much more. So, they set him up with the IV antibiotic & gave him some Tylenol. I went to get him a cup of water & just broke down crying. After everything we went through the night before, the office being closed when I got there.....I just couldn't take it! I did feel better afterward, so I guess I needed it.
Anyway, we're home now. The eyes aren't so glassy & the temp is down for now. They said to go ahead with all of his meds as usual, it's a methotrexate weekend, keep giving him the antibiotic that they sent home with us & give him Tylenol as needed for the fever. They also said that, if he's still running a fever on Monday, to call the office. They will either call in a prescription for a new antibiotic, or have us come in so they can give him some.
So, that's it. He did take a nap when we got home & seems a little more himself, but you can tell he isn't 100%. Hopefully, the antibiotics will start kicking in & he'll be back to running around & playing with LEGOs tomorrow. (That was one clue that he wasn't feeling well, didn't want to play with his LEGOs.)
If all goes as expected, Collin should feel better by Monday & be able to go to school. It will be another busy week....I'm scheduled to work Monday & Tuesday, then we have a field trip to the Orlando Science Center on Thursday. Friday is a spinal tap day at the clinic, plus he starts on steroids for a week. I'll drop a note Friday night & let you know how things go.
I hope you all had a good week & have a great weekend!
Love, Shanon
Friday February 22, 2002 6:37 PM CST
Hi, Everyone! Collin's counts were low when we left for Cleveland last week, but he did have monocytes (indicating that the count would be coming back up), so he wore masks on the planes there & back. We had a great visit, got to see just enough snow to cover the ground & uneventful flights both ways. (We came home to 84 degrees...big difference after experiencing 30-50 all week.)
We got home this past Tuesday & have been busy all week. I worked on Wednesday & Thursday. Collin was supposed to go on a field trip today, but here's what really happened....
Collin went for check up yesterday, counts were great (2100). Look into the ears....they're red again! UGH! They gave us antibiotics & sent him home. Last night, at 6:30 PM, he spiked a fever of 101.5. I called the oncologist on call & he said to go to the ER. He wanted them to take blood for cultures (make sure there is no infection in his line) & give him a dose of heavy duty antibiotics. So, as soon as Jay got home from work, we turned around & drove down to Orlando. Thankfully, they have a pediatric ER in addition to the regular ER. As soon as I told the triage nurse who we were & what was going on, he took us right back into a room. Nurse came in & drew blood from Collin's line & started some IV fluids. Temp was 102. Finally, we were able to give him some Tylenol & he slept for a while. Doctor came in about 1 hour after we got there & checked him over. Nothing that the office didn't already know...ears red, runny nose. Counts had dropped a little bit, 1900, but he wasn't low. So, they give him the IV antibiotic & sent us home, told us to call the office in the am.
By the time all was said & done, we got home at 1:30 am. Put CJ to bed & then he got up at 3:30, wet, & wanted to cuddle with me & watch a movie. He was running a temp again, so I gave him more Tylenol & we fell asleep in my chair.
Got up at 9 am this morning, still glassy-eyed & had a fever (101). Called the office & they said to bring him in to give him more IV antibiotics. I told them we just woke up & that it would be a couple of hours before we got there. No problem, they said. Well, we got there at 12 noon & no one was there! Sign on the door said, Out to lunch -- back at 1:30! Oh, was I ticked off! Went back down & sat in the car for an hour & a half, Collin dozed off for a while.
We went back up & it was all I could do just to answer their questions. I was so upset that I couldn't trust myself to do much more. So, they set him up with the IV antibiotic & gave him some Tylenol. I went to get him a cup of water & just broke down crying. After everything we went through the night before, the office being closed when I got there.....I just couldn't take it! I did feel better afterward, so I guess I needed it.
Anyway, we're home now. The eyes aren't so glassy & the temp is down for now. They said to go ahead with all of his meds as usual, it's a methotrexate weekend, keep giving him the antibiotic that they sent home with us & give him Tylenol as needed for the fever. They also said that, if he's still running a fever on Monday, to call the office. They will either call in a prescription for a new antibiotic, or have us come in so they can give him some.
So, that's it. He did take a nap when we got home & seems a little more himself, but you can tell he isn't 100%. Hopefully, the antibiotics will start kicking in & he'll be back to running around & playing with LEGOs tomorrow. (That was one clue that he wasn't feeling well, didn't want to play with his LEGOs.)
If all goes as expected, Collin should feel better by Monday & be able to go to school. It will be another busy week....I'm scheduled to work Monday & Tuesday, then we have a field trip to the Orlando Science Center on Thursday. Friday is a spinal tap day at the clinic, plus he starts on steroids for a week. I'll drop a note Friday night & let you know how things go.
I hope you all had a good week & have a great weekend!
Love, Shanon
Sunday February 10, 2002 2:52 PM CST
Hi, everyone! It's been a busy week, so I'll get right to it.
Monday, Collin went to a pulmonologist for a consultation. With the way his allergies have been flaring lately & the cough he still has, they wanted to rule out asthma. Luckily, he doesn't have asthma! Just seasonal allergies. They attribute the cough to the chemo meds. A few other parents on the on-line group I talk to have also mentioned a 'chemo cough'. No other reason, other than being on treatment.
He also had a consultation with an ENT about his ear infections. She says his ears are clear now. YEAH!!! Her thinking is that when he got the first ear infection at the end of November and his counts dropped it just held on & flared up when the counts came back up; counts would drop, infection hang on, flare up again. A nasty cycle for the month or so that he had them, but it's finally all clear. She is taking a wait and see approach. We go back next month to see how they look.
While we were there & his ears were clear, he had his hearing tested to be sure that the infections & chemo meds had not done any damage. Thankfully, his hearing is unharmed & within normal ranges.
After the ENT, Collin & I had another nice lunch together. (Steak N Shake) Then we headed to the clinic for his weekly counts & check up. His counts are down again (ANC 600), but high enough to get his oral chemo meds this weekend. Collin & I are going to Cleveland on Wednesday to visit our families, so they want Collin to come back on Tuesday to recheck his counts. Hopefully, they will have come up by then. (If not, I'll have him wear a mask on the airplane to avoid germs.) He's a trooper & I have the utmost confidence that he can deal with it, if need be.
We did the oral chemo meds, Friday night & Saturday, AM, went to our local lab for a methotrexate level. No problems with this, it's old hat by now.
I'll try to post a quick note on Tuesday night, but if I can't....I hope everyone has a great week. I'll post again when we get home next Tuesday.
Love, Shanon
Saturday February 2, 2002 1:16 PM CST
Hello to all & Happy Groundhog Day! Looks like our Northern friends & family are in for more winter! Hope you have had a good week! Collin went to the clinic yesterday. Counts are good (ANC 888) & everything seems to be OK. The ear drums are still red, but there is no fluid present. The doc wants him to finish his antibiotics, he has 2 days left, & we will see what they look like next Thursday at his next appointment. If they look like they are getting infected again, they will put him back on antibiotics until we can get in to see the ENT. (The info has been sent to the ENT clinic, but we are still waiting for them to review his history & see when they can fit him into their schedule. Apparently, there is a 3 month wait for an appointment. ICK!) They also drew blood for an IgG test. This is to see what is immunoglobulin levels are. I believe the immunoglobulin helps to fight infections. If his levels are low, he would get some administered to him via IV. I should get the test results on Monday.
After the clinic, Collin had to get his Pentamidine breathing treatment. Normally he cries for the first few minutes & needs to take a break half way through. It only takes 10 minutes, but leaves a nasty taste in the mouth. I usually give Collin a butterscotch to suck on & he inhales the pentamidine vapor through his nose. I didn't have any butterscotch yesterday, so he tried a Luden's Cherry Throat Drop. He cried for about 15 seconds & made it through the whole thing talking to me. (The crying was more anticipation than anything.) He told me that the throat drop TOTALLY covered the taste! We were both very excited!
After we were done, Collin wanted to go to Friendly's for lunch. ("Because they have grilled cheese, you know!") We went & had a very nice lunch, just the two of us. He was so well-behaved & I was very proud of him yesterday. The waitress commented to me at one point, 'He's quite the little man, isn't he?'. I just got choked up because he is growing up sooo fast!
Sorry to ramble, just having a 'Mom moment'. :)
Hope everyone has a great week!
Love, Shanon
Sunday January 27, 2002 9:42 PM CST
Hello, everyone! Hope you are all doing well & enjoying your weekend! I've heard that the weather is slightly warmed up for our Northern friends & family, enjoy!
Collin had a good week this week. Went to school Monday-Thursday & twice was in the morning extended care. (This was for the two days that I worked this week.) He seems to enjoy it because it's less regimented & he gets to be with his buddy (& "bad" influence) Cody. (He's a sweet kid, but gets a little out of control at times.)
We went for his weekly visit yesterday. Counts have dropped a little more (ANC 668), due to fighting the infection, but should be on the rise by Monday. He still has sinus drainage & the ears are not totally cleared up yet, so we will be getting referred to an ENT next week to see what can be done. But, trooper that he is, he just bounces around like he's got all of the energy in the world. Thankfully!
Not much else going on....I'm enjoying being a "Cooker lady" as one of the little ones at school calls us. Nice thing is that Collin is right in the next room & can pop in anytime just to say 'hi'. And, does. :)
Jay is working hard & trying to get an understanding of the company he is working for, the responsibilities & the people. He comes home a lot happier, although a bit more tired, than he used to. That's a definite plus!
Have a good week, everyone! Talk to you soon!
Love, Shanon
Saturday January 26, 2002 9:25 PM CST
Hello, everyone! Hope you are all doing well & enjoying your weekend! I've heard that the weather is slightly warmed up for our Northern friends & family, enjoy!
Collin had a good week this week. Went to school Monday-Thursday & twice was in the morning extended care. (This was for the two days that I worked this week.) He seems to enjoy it because it's less regimented & he gets to be with his buddy (& "bad" influence) Cody. (He's a sweet kid, but gets a little out of control at times.)
We went for his weekly visit yesterday. Counts have dropped a little more (ANC 668), due to fighting the infection, but should be on the rise by Monday. He still has sinus drainage & the ears are not totally cleared up yet, so we will be getting referred to an ENT next week to see what can be done. But, trooper that he is, he just bounces around like he's got all of the energy in the world. Thankfully!
Not much else going on....I'm enjoying being a "Cooker lady" as one of the little ones at school calls us. Nice thing is that Collin is right in the next room & can pop in anytime just to say 'hi'. And, does. :)
Jay is working hard & trying to get an understanding of the company he is working for, the responsibilities & the people. He comes home a lot happier, although a bit more tired, than he used to. That's a definite plus!
Have a good week, everyone! Talk to you soon!
Love, Shanon
Friday January 18, 2002 2:30 PM CST
Well, this has been a week, everyone! Not only was yesterday the one year anniversary of Collin's diagnosis, but we almost managed to be admitted on Wednesday. I'll start at the beginning of the week..
On Sunday, Jay, Collin, my mother, my brother, his girlfriend (both visiting from Ohio) & I all went to Universal Islands of Adventure in Orlando. It was a cool day, but sunny & amazingly not very crowded. We all had a lot of fun & we're very tired at the end of the day. (Collin got particular joy out of Mommy & Daddy getting sprinkled on the One Fish, Two Fish ride.) We also stopped at my aunt & uncle's house that evening for dinner. It was a very enjoyable day.
On Monday, Collin had a runny nose & was a little tired, so we stayed home from school to rest. Went to school on Tuesday, still a little sniffly. Wednesday, I was scheduled to work & Collin seemed to be OK, but, after morning Chapel, he started running a fever. Time to go home. Checked w/the doc, give him Tylenol...if it gets higher or he looks worse, call us back. Temp went down until the Tylenol wore off, then came back up. Gave him another dose. 4 hours later, temp hit 102 for 1/2 hour then came down to 100.5. Decided I'd give him one more dose & if it didn't stay down we'd call the doc again. Amazingly, four hours later......NO MORE FEVER! (Thank you, God, for listening.)
After that, I figured I'd just keep him home on Thursday, let him rest & see what the doc said today. He's been full of energy & eating well...just a little sniffle, starting to become a cough. Doc's office today.....guess what....ear infections! Counts are very good still, ANC 1600, so a new antibiotic. Chest sounded a little wheezy, so we start doing breathing treatments again, every four hours. They sent him over to get a chest x-ray just to be sure it's not pneumonia. (Still waiting for the doc's office to call with the results.)
Just another week of fun for us in Florida! At least the weather is warming up this weekend....should hit 80 tomorrow & sunny!
Hope everyone has a great week!
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