Monday, April 25, 2005 11:31 AM CDT

Busy, busy, busy! We've been on the run the past week or so. Bryce is doing well, acting great! I do not have recent counts since we do not go back until next Monday, May 2nd. He will receive IV vincristine, IVIG for his immune system, and begin another lovely 5 days of steroids (look for more roid rage stories w/in the next 2 weeks), as well as his Monday night dose of methotrexate and nightly dose of 6-mp.
As you see from the above picture, one thing we keep checking on is our bird nest. Earlier last week it only had 2 eggs, but by the weekend it had 5. Every year since I've started hanging up plants on the balconies, the same birds come back and build a nest. Last year they all hatched and managed to fly away. The year before though, about 2 fell out of the nest, over the balcony and Casey(the dog) got to them:( They will probably not hatch and leave the nest before school lets out in May if the birds stay on their usual schedule.
Strawberry picking! Last Monday Bryce and I went to Hofield Farms and picked lots of strawberries. We were the only ones there! Bryce did a good job and pretty much picked them all, that after sitting on a few of them by accident. He even ATE them. I figured he wouldn't touch them, but instead asked for them for breafast and lunch for 3 days in a row. I guess it was because he was the one who actually picked them.



The great weather last week allowed us to go outside and plant some flowers and clean out the sand/water table. Bryce spent about 2 hours just making a mess with the water and sand. We even got to make a mess with planting sunflowers and some other "mystery plants" I picked up from Walmart.



Yesterday, the weather was back to cold (for me at least). The boys went to Nannie's house when lo'and behold, Uncle Brandon comes with the coolest lawn mower I have ever seen!

The kids wanted lots of rides and of course Uncle Brandon oblidged. Then the "chase the lawn mower" game began. Vance thought he could outrun the lawnmower!


And of course, Bryce has been up to his usual unique dressing techniques. No clue what this get-up is. He had just gotten a pretend weed-wacker, so that accounts for the goggles. The beads are from a kit and the rest is all Bryce!

Bryce has even went to Sunday School for the past 2 Sundays! He likes it too! The first week he had to go and see Vance for a couple minutes, but then went back. Yesterday he did great and sat for the story, activity and of course snack. In fact when I went to pick him up he wasn't going to get up from his chair until he ate all of his snack.

Finally, please remember the blood drive at Northeast Presbyterian this upcoming Saturday in honor of Bryce from 9-1. You can just show up, or you can call to make an appointment so you don't have to wait. You can contact Wendy Clay or Renatta Loquist at 788-5298 to set up an appt. of find out more info. Bryce may not need a blood transfusion ( red blood cells) at the moment, but keep in mind blood can only be stored for a short amount of time in many cases, and the IVIG Bryce receives for his immune system is made from blood.

We hope you all have a wonderful week! Thank you again for your many thoughts and prayers.
There are more pictures on the photo page!


Love,
Tina, Rodney, Vance and Bryce

Wednesday, April 13, 2005 8:28 PM CDT

UPDATE: Friday 4/15/05
I brought Bryce in early for his bloodwork b/c he woke up feeling yucky Thursday morning and threw up. After having his "throw up" medicine he was fine. Today he was fine too, and the vomiting episode was most likely a side effect of Monday night's meds. His counts were:
wbc: 10.3
Hemoglobin: 10.1 YEAH!!
Platelets: 180,000 (slowly creeping down)
ANC: 9476
Yes that's 9476. Since Bryce was on steroids last week, they artificially (sp?) pump up the white count. It should be back down next week some time. Also his IVIG could be making it climb, so....now we want it to go down so they won't up his chemo to over 100 percent in May. The high ANC and wbc has happened to Bryce before and it went right back down within a week. Have a good weekend!!


As you may gather from the headline, Bryce is trying to make up for a year's worth of lost time. The above picture is Bryce on our way out of Ripley's Aquarium today. Vance, Bryce and I went down to Myrtle Beach for the day to meet up with my friend Stacey who I haven't seen in almost 6 years!! She is in the process of moving back to the East Coast and made a pit stop in Mrytle Beach. We first went and ate at the Hard Rock Cafe, went well and then to the aquarium. Bryce completely lost his mind at the end of our visit. He had the WORST TANTRUM I HAVE EVER SEEN HIM HAVE EVER!! Even though he has been off steroids for 5 days he sure acted like he still had "roid rage". Or maybe it's just my parentng skills..hmmm... Oh poor Stacey....next time I will come minus children. Great impression. Bryce screamed bloody murder he did not want to leave, wanted to walk, didn't want to walk, etc... Then when we got out, he decided to take off his shoes and fling them across the sidewalk. That is why in the picture he has on no shoes, and at that point I did not care, just wanted to get him to the car, so he walked in his socks all the way around to the parking lot. And of course, 5 minutes down the road he fell asleep and slept for the next 2 1/2 hours. (guess he was tired, huh Stacey?) We met little River, who is adorable, and Stacey banned me from putting her picture on the site so I will honor her request. Tried to get one with the boys and River, but Bryce was already starting the fit. When I get home and tell Rodney what happened, he goes "Maybe he's too big for a stroller". Well, I bring one of those small umbrella strollers b/c he gets tired so easily, and when he runs away instead of following, he gets to sit in it instead. So when I explained this to Rodney he goes, "Maybe you shouldn't bring 2 boys to the aquarium?" haha, thanks Rodney!


Other than that, the kids enjoyed it. In fact when Bryce woke up in the car and Stacey was gone he said "Where is Stacey? Did Stacey go home? I like visiting your friend Mommy!" Here are some pictures outside of Hard Rock Cafe.


Healthwise, Bryce's counts were good at the last visit, but all went down. His hemoglobin stinks though and was only 7.8, down 10.4. He feels great (other than tantrums) and his ANC was high enough to go out. We will go back on Monday the 18th for counts only.

Since last update we visited Ms. Geri, who used to watch Bryce. He got to see his friend Rence for a little while and stayed to eat luch and play while Mommy went to the dentist for the 3rd time in 2 weeks.

Bryce was so excited to go and asked a million times if it was time to go and see Ms. Geri yet. We will probably go back and visit next Friday again.

Other news this week, Bryce is still into food. Especially when I come home from the grocery store. The kids unload the bags and act like they have never seen food before. One of Bryce's favorites are pickles! Other than that, just dealing with temper tantrums. Here is a blurb from an e-mail I sent last week while he was on steroids:

Bryce and I just got home from a wonderful "roid rage" session at the local mall. Thought all of you whose child is currently on steroids would enjoy at my expense:

The scene: Old Navy. First Bryce was excited b/c he was going to get new t-shirts to cover his growing belly. Well, that lasted 5 minutes. At least I had enough of them to make due. Then he wants to ride the elevator. I really didn't need to go upstairs, but we did anyway. Of course 10 seconds off the elevator, that wasn't good anymore. so I told him we were going home now and we were going back downstairs to pay. Then all hell starts. Of course the meaningful women at the cash register try to comfort him, one being about 8 months pregnant. I had to assure her as we left that all children aren't like this (meaning having a total fit!!) Of course, I could care less if he screams, like whatever I say to him at this point won't help. Then as we wheel out two old ladies walk by and one goes to the other "Oh, boy...".
The car is the best part. Did anyone see SuperNanny on ABC Monday night?????Well, we could give those nutty kids a run for their money. At least Bryce didn't spit on me. First I stuffed him in his brother's car seat (after I dragged him by the legs from the back of the car). Then as I drove down the aisle he escaped. Pull over..stuff him in his car seat..escaped again. This time I am climbing over the front seat, then using "the stick your knee in his chest" approach to make the seat belt tight enough and hold him down, I was trying to escape being bitten and kicked. His little mouth was wide open following my hands trying to latch on. Instead he got a mouth full of seat belt and as I drove off into the sun he was still screaming and chewing on it and kicking the door.
Finally about 5 minutes down the road he stopped yelling to announce, "I'm hungry. I want chicken nuggets. What do you want to eat Mommy?" Go figure.....
Now he's asleep on the couch since he fell asleep as soon as I bought the nuggets and is still "whimpering" in his sleep form crying so much.
Gotta love those "roids".....Oh, to top it off, he has to come with me to a dentist appt. at 3:20. God help those people..


Last, be sure to sign up for the blood drive at Northeast Presbyterian Church in honor of Bryce on April 30th from 9-1. You can call for an appt so you don't have to wait, or just show up! Bryce may not need a blood transfusion right now, but has in the past. Also the IVIG he recieves each month to boost his immune system is derived from blood products, so be sure to donate!!

Thank you again for all of your thoughts and prayers. Pray for Bryce's hemoglobin to go up by next Monday. Hey, maybe it's an issue with the tantrum problem???or maybe it's just being 3???

Love,
Tina, Rodney, Vance and Bryce

Monday, April 4, 2005 8:13 PM CDT

Today is the start of month 2 of LTM. As you may have noticed from the counter above, Bryce still has 2 yrs. and 2 months to go of LTM (long term maintenance). Today we went to the clinic and received IV chemo called vincristine, IVIG which is a blood product to help boost Bryce's immune system, and we started 5 days of steroids, our weekly Monday dose of methotrexate, and our nightly 6-MP pill. The poor guy has taken A LOT of medicine today. This on top of zantac for his tummy while on steroids and zofran tonight to help prevent nausea from the methotrexate. His counts were:

wbc: 1.6 (down from 2.6 two weeks ago)
platelets: 188,000, normal but down too
Hemoglobin: 7.8 WAY down from 10.4 two weeks ago
Pre ANC: 1378 (the final is usually a little higher)

So....ANC is still at a good level, wbc too, actually they really just look at the ANC. We are going back in 2 weeks to check on the hemoglobin. Normally at this point we were not scheduled to go back until May. Hopefully he will not need blood and this will go back up. It could be a result of ARA-C from weeks ago, but we'll see......
Other than that, he got a clean bill of health and he is being his usual self. We've already started the bacon steroid kick and he had 6 slices as a "snack" before dinner!



We had a wonderful time with Grandma and Grandpa NJ, and even had a warm sunny day where we washed cars in our bathing suits and played with worms. Of course the poor worm had a soap bath, had a ride in a plastic car and the who knows what became of him!


We made another trip to the zoo and had a blast. I always take a picture of the kids each year at the same spot, so I'll have to see if I can dig up a past picture to post. The kids have been going nuts with their grandparents, and Bryce even went to his first movie in a movie theater with brother, Mommy and Grandma NJ. Robotz was the movie and eating popcorn was the game.




BRYCE AND VANCE ACTUALLY PLAYING TOGETHER

Finally put on your calendar April 30th from 9-1. Northeast Presbyterian Church is having a blood drive in honor of Bryce. It will be held in the Fellowship Hall. If you want a certain time, you can call for an appt, otherwise you may have to wait. I'll post the number soon, or again, just show up! Even though Bryce may not directly receive the blood that you donate, there are so..many children and adults in need of blood AND other products that are made from blood such as the IVIG Bryce receives monthly. Hey, Rodney is even donating this Thursday at the Red Cross.
**Weird fact: Bryce cannot receive blood from family b/c if God forbid down the road he needed a Bone Marrow Transplant (if the leukemia comes back) one of us may be a match. If he received our blood prior to transplant, his body will develop antibodies to our blood and may reject the transplant. Also this is weird too, you do not have to have the same blood type to be a bone marrow donor. Rodney, Vance and I are A , but Bryce is O (yes it is possible). If we were to be a match for Bryce after transplant his blood type would change from O to A!



Hope everyone has a super week. I will update after our next visit for bloodwork if I don't update next Monday. Please pray for Bryce's hemoglobin and red blood count to go up without needing a 3 hour transfusion. Those make very long days for Bryce.

Love,
Tina, Rodney, Vance and Bryce

Monday, April 4, 2005 8:13 PM CDT

Today is the start of month 2 of LTM. As you may have noticed from the counter above, Bryce still has 2 yrs. and 2 months to go of LTM (long term maintenance). Today we went to the clinic and received IV chemo called vincristine, IVIG which is a blood product to help boost Bryce's immune system, and we started 5 days of steroids, our weekly Monday dose of methotrexate, and our nightly 6-MP pill. The poor guy has taken A LOT of medicine today. This on top of zantac for his tummy while on steroids and zofran tonight to help prevent nausea from the methotrexate. His counts were:

wbc: 1.6 (down from 2.6 two weeks ago)
platelets: 188,000, normal but down too
Hemoglobin: 7.8 WAY down from 10.4 two weeks ago
Pre ANC: 1378 (the final is usually a little higher)

So....ANC is still at a good level, wbc too, actually they really just look at the ANC. We are going back in 2 weeks to check on the hemoglobin. Normally at this point we were not scheduled to go back until May. Hopefully he will not need blood and this will go back up. It could be a result of ARA-C from weeks ago, but we'll see......
Other than that, he got a clean bill of health and he is being his usual self. We've already started the bacon steroid kick and he had 6 slices as a "snack" before dinner!



We had a wonderful time with Grandma and Grandpa NJ, and even had a warm sunny day where we washed cars in our bathing suits and played with worms. Of course the poor worm had a soap bath, had a ride in a plastic car and the who knows what became of him!


We made another trip to the zoo and had a blast. I always take a picture of the kids each year at the same spot, so I'll have to see if I can dig up a past picture to post. The kids have been going nuts with their grandparents, and Bryce even went to his first movie in a movie theater with brother, Mommy and Grandma NJ. Robotz was the movie and eating popcorn was the game.




BRYCE AND VANCE ACTUALLY PLAYING TOGETHER

Finally put on your calendar April 30th from 9-1. Northeast Presbyterian Church is having a blood drive in honor of Bryce. It will be held in the Fellowship Hall. If you want a certain time, you can call for an appt, otherwise you may have to wait. I'll post the number soon, or again, just show up! Even though Bryce may not directly receive the blood that you donate, there are so..many children and adults in need of blood AND other products that are made from blood such as the IVIG Bryce receives monthly. Hey, Rodney is even donating this Thursday at the Red Cross.
**Weird fact: Bryce cannot receive blood from family b/c if God forbid down the road he needed a Bone Marrow Transplant (if the leukemia comes back) one of us may be a match. If he received our blood prior to transplant, his body will develop antibodies to our blood and may reject the transplant. Also this is weird too, you do not have to have the same blood type to be a bone marrow donor. Rodney, Vance and I are A , but Bryce is O (yes it is possible). If we were to be a match for Bryce after transplant his blood type would change from O to A!



Hope everyone has a super week. I will update after our next visit for bloodwork if I don't update next Monday. Please pray for Bryce's hemoglobin and red blood count to go up without needing a 3 hour transfusion. Those make very long days for Bryce.

Love,
Tina, Rodney, Vance and Bryce

Monday, March 28, 2005 7:31 PM CST

Hope everyone had a happy Easter. We went on 2 egg hunts on Saturday. One at Omi's house and another at Nannie's house. At Omi's we hunted with cousins Joseph, Mackenzie, Thomas and Ella Grace, and then to Nannie's to hunt with Mackenzie and Thomas, Katherine and Patrick. Lots of eggs, and lots of candy and money too!

At Nannie's Bryce learned to climb trees to retrieve Easter eggs, and Daddy learned how to retrieve kites that broke and flew over Nannie's property so that Daddy had to get in the car and drive around to the next neighborhood where it luckily landed unharmed in the middle of the road. Of course Bryce cried bloody murder the whole time it was missing.

On Easter Sunday, Vance had some interesting comments to make at church. First off, we brought Bryce to the 11 am service and Vance. Vance did not want to go to Children's Church so he stayed with us and Bryce the entire time. Meanwhile I had to bribe them with smartie candies, crayons and little notepads to keep them quiet. Finally Bryce fell asleep in Rodney's arms, but Vance was wide awake for the sermon. First when Pastor Crowe was using the imagery of a lion chasing you, the pastor goes, "What would you do if a lion was chasing you?" and Vance shouts out "Run!". The second comment was at least quiet. Vance has this notion that intelligence is connected with the size of a person, age, etc... so he looks at Pastor Crowe (who is VERY tall and was illuminated by the lighting), listens, studies him hard, and announces "He is really smart, he must be God!". Vance cracks me up!

Of course the Easter Bunny treated them well. Vance still has to try out some in-line skates, and Bryce already tried out in the house his new Batman baseball bat and ball. As you can see they also got Sponge Bob stickers and Bryce decided to decorate his face with them.


As for Bryce's health, we haven't had counts done this week, but last week's were:
WBC: 2.6
Hemoglobin:10.4
Platelets:305,000
ANC: 1508

He is doing extremely well this week, and all the colds are gone. We go back April 4th for vincristine, IVIG, and start another 5 days of steroids, along with our Monday dose of methotrexate, and nightly 6-mp pills. If Bryce's ANC is above 2,000, they may up his dose of nightly pills, even though he is on 100 percent of the doses right now. Kids can even be on 125 percent of the doses, if their ANC is consistenly above 2,000. Hopefully we can stay where we are at.

We will be busy this week since my parents are here, and I do have some better Easter pictures in my regular camera that I need to finish taking, so look for more new pictures at the end of the week. I will update next Monday after our clinic visit!

Also, Northeast Presbyterian is holding a blood drive in honor of Bryce in April. As soon as I have the exact date I will post it on the site!

Everyone have a super week! Please continue to pray for Bryce and that he continues to have a good reaction to the drugs with his maintenance chemo.

Love
Tina, Rodney, Vance and Bryce

Monday, March 21, 2005 11:34 AM CST

Hello all! Today we got some good news and a sigh of relief. Bryce's counts...they actually look pretty good compared to the 11th.

WBC: 2.6
hemoglobin: now up to 10.4
Platlets: 305,000
ANC: 1300

The ANC 1300 was the "pre" ANC since we left before the final came in. If anything, the final is usually a little higher and since I have been on the computer..sorry Robin, you're probably trying to call..this means we can be amongst the crowds. I am still leary about bringing him to Easter service next Sunday.

My mom and Al will be coming this Friday from NJ to stay for a week. We will be going to Rodney's mom's house on Easter. Again, don't know if we will bring Bryce to church, not only the germ issue, but he WILL NOT stay in the nursery, he always flipped out before he got sick, so we would have to bring him the sanctuary with us. I know lots of people would like to see him though!


This week we hung out a good bit, actually got the bedroom painted, thank you Rodney, and it looks good. The kids had fun painting the driveway on Sunday and only a tiny bit of yellow got on my car (it washed off).


Vance did have his first t-ball game this past Saturday. he did great! They only play 1 inning for this exhibition game, but will play a full "3 inning game" next Saturday at 10:30.

A BIG surprise for us was getting to officially meet Jenn Holbrook, our friend whose son Reece has ALL like Bryce. She was in town for the day with her youngest son Cooper. Reece was in NC with relatives. Of course Bryce had to play with the pebbles on the b-ball field, in fact just about every child under 3 had a fistful. The funny, well I guess funny, thing is that now that Bryce is in long term maintenance, it is like having to reintroduce the "savage" to society! He just doesn't get some things! I guess being in the house for most of the past year except for the clinic, grandparents' houses, and Target at 8:30 am does that to you! Jenn- I can't wait to meet under more "normal" (if that's possible) circumstances with both the boys and we can actually talk more without chasing Bryce and the whole city of Columbia at a ball field! You can check out Reece's site at www.caringbridge.org/nc/reece


Hope I'm not jumping the gun, but it looks like the 2nd annual Bryce Summers Golf Tournament is in the talks for this June. We will be looking forward to this and if all works out hope Bryce can stay for the entire event this time. when we have a final okay and date we'll let you know.

Well, not too much more to post. That is actually a good thing! Bryce's next appt. is April 4th for IV chemo vicristine, IVIG to boost his immune system, and counts. I will update next week with some Easter pictures and Summers' stories. Vance did manage to bring home a mild cold Friday and share it with me. I am drinking my "Airborne" to keep it at bay. Bryce started with the sneezies this morning, but it doesn't seem to be a cold with a fever or one to knock you off your feet!


Oh, one more thing, HAPPY BIRTHDAY RODNEY, you are turning old like me on March 28th. 32!!! (Okay, I'm older I know...)


Have a wonderful Easter holiday and to some parents, don't rip your hair out during Spring Break! Thank you again so.....much for all of your thoughts, prayers, letters and visits. Again, I believe in my heart that everyone's faith and prayers have pulled Bryce through!

Love,
Tina, Rodney, Vance and Bryce

Monday, March 14, 2005 4:20 PM CST

Hello! We have not had a "scheduled" trip for the clinic but we did go in this past Friday because Bryce has been really mopey last week. After his last chemo treatment on the 7th, he kept walking around saying "Mommy I'm tired" for most of the week. Since his hemoglobin had gone down to 8.8 I thought it had gone down more. So Friday we went to have counts checked and guess what.... it actually had gone up to 9.6. The rest was:

platelets: 498,000 (high)
WBC: 1.1 (down)
ANC: a measley 577 (down from 779)

He may have just been yucky from the vincristine, but he has perked up this weekend and today.

From the photos you can see the stand-up straight fuzz growing back in, all except a nice bald patch right in the middle of his head. Exactly where you might see someone with "male pattern baldness". I hope the rest will grow quickly so we can create a nice "comb over" to cover it up.



On Sunday we went to an Easter Egg Hunt at the Governor's House/gigantic "complex" downtown. The kids were screaming for the Easter Bunny. We now have enough candy for the rest of the year. They had over 5,000 plastic eggs, way more than enough for the kids that were there. I've already raided the stash myself last night. Ricky the Raccoon from the hospital was there too, Bryce's favorite, so we had to stalk him down as well.

Vance has his first t-ball game this Saturday at the league's "Sports-a-rama" at 10:30 am. Bryce will probably not enjoy this since last Thursday we brought him to Vance's practice and he cried, no screamed, for no lie 30 minutes to go BACK to the playground. Bryce and I hung out in the car while Rodney and Vance finished up. I can chalk that tantrum up to "roid rage" from steroid week. If Bryce looks a little puffy, it may be from the bacon/hotdog/ham diet he has been on this past weekend.

Rodney and I are attempting to paint our bedroom, although the paint is still sitting in the can since Friday afternoon. Maybe before Easter??

Our next clinic visit is March 21st, and I will be anxious to see what his counts are doing, since right now we are limiting Bryce to outside activities since his ANC is down.

Hope everyone has a great St. Patrick's Day on Thursday! Please continue to say prayers for Bryce that his counts will even out and he will have no ill effects from the methotrexate that he is taking tonight.



Love
Tina, Rodney, Vance and Bryce

Monday, March 14, 2005 4:20 PM CST

Hello! We have not had a "scheduled" trip for the clinic but we did go in this past Friday because Bryce has been really mopey last week. After his last chemo treatment on the 7th, he kept walking around saying "Mommy I'm tired" for most of the week. Since his hemoglobin had gone down to 8.8 I thought it had gone down more. So Friday we went to have counts checked and guess what.... it actually had gone up to 9.6. The rest was:

platelets: 498,000 (high)
WBC: 1.1 (down)
ANC: a measley 577 (down from 779)

He may have just been yucky from the vincristine, but he has perked up this weekend and today.

From the photos you can see the stand-up straight fuzz growing back in, all except a nice bald patch right in the middle of his head. Exactly where you might see someone with "male pattern baldness". I hope the rest will grow quickly so we can create a nice "comb over" to cover it up.



On Sunday we went to an Easter Egg Hunt at the Governor's House/gigantic "complex" downtown. The kids were screaming for the Easter Bunny. We now have enough candy for the rest of the year. They had over 5,000 plastic eggs, way more than enough for the kids that were there. I've already raided the stash myself last night. Ricky the Raccoon from the hospital was there too, Bryce's favorite, so we had to stalk him down as well.

Vance has his first t-ball game this Saturday at the league's "Sports-a-rama" at 10:30 am. Bryce will probably not enjoy this since last Thursday we brought him to Vance's practice and he cried, no screamed, for no lie 30 minutes to go BACK to the playground. Bryce and I hung out in the car while Rodney and Vance finished up. I can chalk that tantrum up to "roid rage" from steroid week. If Bryce looks a little puffy, it may be from the bacon/hotdog/ham diet he has been on this past weekend.

Rodney and I are attempting to paint our bedroom, although the paint is still sitting in the can since Friday afternoon. Maybe before Easter??

Our next clinic visit is March 21st, and I will be anxious to see what his counts are doing, since right now we are limiting Bryce to outside activities since his ANC is down.

Hope everyone has a great St. Patrick's Day on Thursday! Please continue to say prayers for Bryce that his counts will even out and he will have no ill effects from the methotrexate that he is taking tonight.



Love
Tina, Rodney, Vance and Bryce

Tuesday, March 8, 2005 8:49 AM CST

We made it back from Gatlinburg, Tenn. alive and well! The kids had a blast. If you're a parent and happen to watch "Dora the Explorer" our trip went "over a very long road, through snake road, and through the haunted forest". The long road being I-26, snake road being a VERY long, winding 2 lane road cut out among cliffs in the pitch dark, and the haunted forest is the Smoky Mountain National Park. While we were there we took the kids on a helicopter ride, went to the very overpriced Dinosaur museum, and the part that Vance liked the best was hiking on the trails in the National Park, picking up sticks and pretendng to be a Power Ranger and throwing rocks in the streams..and that part was free! We also took them up to the ski park and rode them both on the "Alpine Slide" (for those of you from NJ think of Action Park). The highlight of Saturday night was to go in the "big bathtub outside" aka the hot tub.

On the way home we finally heard Bryce's "story" on the radio. It was really neat and we didn't even sound too horrible! They are going to give us a CD of the pre-recorded interview so again, if I ever get the music issue worked out...
Other good news..WE STARTED MAINTENANCE..but just by a hair. His ANC was 779. It needed to be 750. His other counts were:

WBC: 1.9
Hemoglobin: 8.8
Platelets: 387,000
ANC: 779

The hemoglobin has dropped from 9.8 to 8.8 since last Monday, so we need to keep an eye on him for extreme sleepiness, no energy, etc.. He received his spinal (LP) of methotrextate, this will not be given again until 83 more days. Also he received vincristine, this not again until April 4th along with IVIG. He now is on steroids for 5 days and started his daily/nightly pill of 6-MP. next Monday he will take methotrextate pills for one day each week. It still sounds like a lot of pills to take, but the amount of steroids is less than before. We were warned his counts may go up and down until we get the right dosage of 6-MP and methotrextate, since they start at the highest dose. On maintenance they want his ANC to stay in the 750-2000 range.

We are going to have to keep an eye on Bryce's progress in the area of growth, mainly height/weight. Developmentally, academic/mentally he is fine, right on target, but he still has not grown much at all since last March. We will give it a month-3 months and if no change is seen, look into other reasons why he is not growing. Again, we are not tall people, but Bryce is just so..tiny. He has grown a little bit and hey, his foot grew a size and a half since July, so maybe his body will catch up!


Not many crazy "Summers stories" this week. Our next appt. is for bloodwork on March 21st, unless we think his hemoglobin is still going down. I will try to update next week some time. Happy St. Patrick's Day next week! Vance has a t-ball game in 2 weeks so don't know if we'll make it to the parade in Five Points.

Thank you again for all of your support and prayers. Please pray that Bryce does well adjusting to maintenance, and that his hemoglobin will increase on it's own without him needing a transfusion. Also a special friend of ours, Reece, who has ALL like Bryce is patiently waiting for his counts to go up, this after being in the hospital for low counts and a fever the other week. He's got a neat web page, if you get the chance check it out at www.caringbridge.org/nc/reece.

If you haven't in a while, please leave a short note to Bryce in the guestbook. Just a "hi!" makes Bryce's day when he asks "Did I get me-mail?"

Love,
Tina, Rodney, Vance and Bryce

Thursday, March 3, 2005 8:23 PM CST

What a fun afternoon! Bryce has been better since Tuesday, so today we were able to go to the radio-thon. For those of you who looked for us on tv at 5:15, we got bumped. The mother and child you saw were scheduled to go earlier, but were late and were on at 5:15, but...we are going to be on the 11 pm news! They are going to put a short interview from today and show scenes from the swim-a-thon they had for Bryce in July and use it as an update on Bryce. The kids did great for the live interview part on the radio at 5:15 on B106.7. If you listen throughout the day Fri-Sunday you will somewhere hear our "story". This part was pre-recorded. They are repeating the different stories throughout the day. If you would like to make a donation for the Children's Hospital in Columbia, you can call 434-3000 or long distance 866-434-B106. Vance knows this number by heart b/c he got to read it on the air.


Then the kids got on the stage and pretended to answer phones and ring the little bells. This was at the very end and they were getting a little wild so it was our opportuniy to leave before they starting getting obnoxious! The tv station thought it was cute so they will probably have shots of that too since they taped them doing this. Dawndy Mercer interviewed us for WIS and Tony Clyburn for B106.7. It was really fun!

SUMMERS STORY: Yesterday I managed to make a big mess. I had been putting Bryce in pull-ups for a day or two after throwing up b/c I thought the other end would be having problems too (I know, gross..) but he didn't. Well, Bryce took his clothes off for a bath and his pull-up was stuck in his pants. This morning I have like 200 loads of laundry to do so I just go around gathering dark clothes off the ground and throw them in the wash. Well, I go to open my washer and see my nice clean clothes and I see masses upon masses of clear/whitish gooey, sticky gel balls all over the clothes. The pull-up got washed and exploded all over the machine! SO for 30 minutes I spend shaking out clothes over the side deck for all of busy Sparkleberry Lane to see, my underwear and all. The other 30 minutes were spent wiping microscopic goo out of the washer so I could wash the other 199 loads. Lesson: check the pants before putting them in the wash!

This weekend we are going to Tennessee with Rodney's mom and step-dad for a "spur of the minute" get-away. I am slightly anxious about Bryce going. It will be the first time we have left SC since being diagnosed and we will be about 5 hours from home. Since his counts were all okay, minus the hemoglobin, we may be "amongst the crowds". Just scared he will bring home something. So..if everyone is healthy tomorrow, we will be leaving around 3pm and coming back Sunday early evening.

Please say a prayer for us for a safe trip and no mystery illnesses come back with us! (and being in the car with the kids for 5 hours without videos b/c it now eats the tapes).

Again, thank you so much for all of the prayers and thoughts. I truly believe Bryce has made it through all of the past year with minor side effects due to the power of prayer.

I will update after Monday's visit to the clinic when we HOPEFULLY start maintenance!


Love, Tina, Rodney, Vance and Bryce

Monday, February 28, 2005 7:27 PM CST

What a crummy start to the week! Bryce woke up last night with the dreaded stomach bug! He got sick twice, of course in our bed! Then he decided to stay up from 1:30am until 6:00 am, so poor mommy slept for a total of about an hour in all last night.

Despite the bug, we were told to go to the clinic anyway. Since we didn't want to get anyone else sick, we go to the "condo". This is a pretty good way to relax. It's pretty much your own private hospital room, TV and all. Since of course Bryce hadn't thrown up since the morning and no fever, he received his chemo vincristine,and IVIG to help boost his immune system. He played in the room, watched tv and ate crackers. So, luck has it, on the way home 5 hours later he throws up!

We have given Bryce an anti-nausea drug to help some. As of 2:30 today, he hasn't thrown up again. Now we are praying so...hard for it to skip everyone, but I think I am doomed since Bryce climbs all over me all day.

Since I wrote last, Bryce's platelets were down to 16,000 last Thursday, but are now in the 100,000's on their own. (Sorry do not have my paper with me!) His hgb was 9.8 and ANC in the 2,000's. I thought it would be higher after 4 more days of shots, but the stomach bug may have lowered them. At this point we will start maintenance next Monday. YEAH!!!!! It is a long day with methotrextate in his spine, vincristine, 5 days of steroids, and nightly doses of pills called 6-MP oh and methotrextate pills once a week. It's not like this all of the time.

On Thursday pending on who is ill, we will be on WIS-TV (Columbia SC tv station) at the 5:15 slot on Thursday for the radio-thon to raise money for The Children's Hospital. Our radio interview will also air on and off throughout the weekend on 106.7.

Gosh, it's hard to remember what I wrote last time on only an hour of sleep! I will update Thursday night if we make it to the radio-thon with pictures.

Please say an extra prayer for Bryce to be rid of the stomach bug and have high counts for next Monday!



Love,
Tina, Rodney, Vance and Bryce

Tuesday, February 22, 2005 7:51 AM CST

Only 13 more days to go until maintenance! From the picture, Bryce just threw away the extra 6-TG pills we will never have to take again. The "hard core" drugs are done at last.

We are slowly trudging along. Yesterday we were back at the clinic for our chemo, vincristine, and a big bag of blood. Bryce counts are really falling, except for his white count and ANC. The reason why they are up though are because of the neupogen shots. His counts are :

WBC: 2.3
HEMOGLOBIN: 7.4 (before his blood transfusion)
PLATELETS: 27,000 (Yikes! He will get a transfusion if they go below 20,000)
ANC: 1978

We will go back Thursday to see if we need to continue the neupogen shots, and possibly platelets. In the past, Bryce's platelets have gone low and rose on their own by the next week. They are lower than they have been this time though, and the poor thing has bruises all over him. On his head from wrestling with Vance, little bruises on his back, legs and where we took the bandage off yesterday from the clinic, blood pooled under the skin to where it almost looks like it is bleeding.

If any new bad bruises develop, I may just bring him back in tomorrow instead. When platelets are this low, we need to limit Bryce's physical activities and he can't use a regular toothbrush b/c his gums may bleed and infection could start.

Bryce is also trying to fight off what seems like the start of a cold; runny nose, some sneezing. Geez, we hadn't been anywhere in 2 weeks and we all wash our hands so they are raw, so I don't know where the cold is coming from? It seemed to start when we started the neupogen shots, so I don't know if the 2 issues are related. Vance, knock on wood, has managed to avoid the stomach bug so far that has been going around his class. Please say a prayer that it just avoids our family!


SUMMERS STORY: Last night at 10pm, the doorbell rings. Of course who the heck is ringing your doorbell at 10pm??? We have some oddballs in the neighborhood lately, so we've been on guard. Rodney goes on the front porch, yelling "Who is it? Who are you?". Meanwhile, of course Bryce couldn't sleep and was up with us too. So, the two of us are in the kitchen with the cell phone. I already have 911 dialed in case it's some nutcase trying to get in our house. Finally it's some old guy, looking for Annette. Well, this old man was here in the fall trying to serve papers on someone, but they had our address but the neighbor's name. Now this is like the 3rd incidence lately of different people who mistakenly had our phone #, but were looking for another "Tina Summers", then some lady called asking to talk to "Tina" and Rodney was like "Who is this?" and the woman goes "her mother". Rodney was like this isn't her mother? What number do you want? Well, it was the wrong number, the woman was pretty freaked out too. Wrong Tina again. And now, this guy trying to serve papers on us. Rodney told him it's the people 2 houses down. The old man tried but we saw he left there rather quickly with his papers in hand. Needless to say the police visit that house at least once every 2 months.

Okay, we don't live in the ghetto or anything, Just some wacky things going on!

Vance starts T-ball practice today. I will try to get some new pictures soon. Our other digital camera that we've borrowed is getting fixed, and the one we have takes horrible pictures. I will try to take some with the real camera, but it will take a while to use up a roll! Hope everyone has a great week!

Love,
Tina, Rodney, Vance and Bryce

Tuesday, February 15, 2005 8:25 AM CST

ADDED ENTRY 2/18
WE ARE BACK FROM THE CLINIC. BRYCE'S COUNTS ARE FALLING, BUT HE IS ACTING FINE AND THEY DID NOT FALL AS MUCH AS I HAD ANTICIPATED. WBC: 0.7, HEMOGLOBIN: 9.3, PLATELETS: 82,000 ANC: 455
The shots are not Too difficult to give, but Bryce does not enjoy having the area cleaned. The shot part he didn't care! I on the other hand managed to stab my thumb with the needle before giving the shot! Good one! We go back Monday for vincristine. At this point, 17 days until maintenance. Keep praying for those counts to go back up!

(From 2/15) What a week! Well, yesterday we went to the clinic and so far our counts aren't completely down the toilet. They are down a bunch from last week, but still hanging in there for a few more days. When I compared Bryce's counts from yesterday to the same part of this treatment in September, the counts are almost identical. Regardless though, Dr. Ron wants to go ahead with the neupogen shots anyway this Friday.

WBC: 1.1
hemoglobin: 9.8
platelets: 152,000 (only thing normal but only by a smidge)
ANC 802

These shots are not chemo, but will help Bryce's white count only to recover so if he did contract an infection, he will have something to fight it with. His red count and platelets could/probably will still drop and if he follows the same pattern as in Sept., he will more than likely need a blood transfusion next week. Maybe platelets too. On Friday we will go to the clinic and they will show me how to administer the shots. We could have given them through his port, but then it will be accessed (with the tubing hanging out) for many days, which could provide a way for an infection to develop in the central line. This would be a VERY bad thing, inpatient admitted, possible port removal and replacement, etc..So we chose the shots (in the leg).

The side effect of the neupogen shots are bone pain, so I hope Bryce will be able to handle any aches and pains that come with the shots.Maybe by some long shot his counts will be good on Friday and the shots option will be rethought, but probably not.

We have spent our week indoors, staying away from germs! even though we could have gone out. We'd rather be safe than sorry. The stomach bug seems to be going around Vance's class (the parents and teacher mainly) so we hope Vance will be spared of that!

I can't think of any Summers stories at the moment, but one is bound to happen soon. We now believe our dog is deaf b/c she won't even hear you if you scream right behind her, and she'll only move if you stomp on the ground or do something so she sees you. She may just be ignoring us though, sounds like the kids most of the time too. Poor Casey is 13 years old now and that is a pretty long time for a lab/golden to live.

I will add some more to this page on Friday. Not looking forward to these shots!!!!!!!!At least we only have 20 more days until maintenance, 3 more ARA-C doses, 6 more 6-TG pills to take, and we will see these drugs no more!!!!!!!The above picture of Bryce is him with his port accessed. He has 3 more days of this, where we give him his ARA-C at home. On Thursday afternoon, I will take the dressing off and pull out the needle. Maybe I'll show you a picture of that next week!

Hope you all have a great week and thank you so much for your phone calls to check on Bryce and messages. Bryce needs all the prayers he can get!

Love,
Tina, Rodney, Vance and Bryce

Wednesday, February 9, 2005 8:42 AM CST

Hello! We finally started the second half of our Delayed Intensification #2 after being delayed a week. Bryce's counts looked really good this week, so a week off made a huge difference this time. It is a good thing that they are up going into the 2nd half. They were:

WBC: 4.1
Hemoglobin: 12.3
Platelets: 336,000
ANC: 2788

All normal, wow, for now!

We had a problem with one of our chemos at the clinic on Monday. Bryce received a higher dosage of cyclophosomide than he was suppossed to receive. He was given the dose for a 40lb child instead of a 30 lb one. It is a VERY long story, but to prevent any problems, he received extra IV fluids, a drug to "bind" this chemo in his bladder to rid of more easily, and he will receive neupogen (not a chemo) next Friday to help keep his white and other counts from completely crashing. Again it is a VERY long story.
We just pray that since his counts were higher going into this, that they won't crash at all. We expect them to go very low, but maybe...he won't need the neupogen, which he would receive for 10 days through his port.

On the brighter side, we went to visit Tony Clyburn at B106.7 to record his story for the radio-thon for the Children's Hospital the first weekend of March, since his counts were up. I probably will sound like a moron, but I was more worried about the kids tearing something up! I will know the exact time it will be on closer to March. We also gave him a copy of Bryce's song that was made for him, and he will try to incorporate it into the interview as the intro music. That way you can hear it, since I can't get it on the web site yet.

Summers story: Last week as my mind was mush as usual, I managed to leave Vance's pj shorts on him when I dressed him. Just put the pants on right over them. So about 2:00 when Vance finally realized it after going to the bathroom all day, he calls out to the class and the teacher from the bathroom "Hey, my mom forgot to take off my pajamas'! Well, after that he proceeded to tell every teacher in the hall and wanted to show everybody!
We also tried to trick poor Vance. As you can see we had buzz off the wire,frizz, fuzz that was left on Bryce's head. Then we stuck vance in the chair and Rodney, notice I said Rodney, pretended he was shaving his head. He even dropped some off Bryce's hair on his lap. He was slightly stunned, but realized we were only kidding him!

Other than that, not too much excitement. Bryce is currently taking ARA-C by infusion at home that we give him and a drug called 6-TG by mouth (pill) each night. These drugs make him nauseous, so he's not into eating much and has asked for the ole' "throw-up bucket" the past 2 mornings. We give him a drug called zofran to counteract this, but it also cuts his appetite, at least for him. Now only 26 MORE DAYS until maintenance, but we will probably be delayed starting this b/c of counts. We go back next Monday.



Please have Bryce in your prayers that his body will metabolize this chemo well and his counts will not crash requiring blood and platelet transfusions. He's surprised us before, and hope he will again!

Love,
Tina, Rodney, Vance and Bryce

Tuesday, February 1, 2005 9:28 AM CST

Hello! Well, Bryce's chemo has been delayed for a week due to a low ANC yesterday. Remember it needs to be around 1000 to go out and about and yesterday it was 260! It needs to be 750 to continue with the next 28 days of Delayed Intensification #2. The rest of his counts were:

WBC: 2.0
Hemoglobin: 11.5
Platelets: 238,000
ANC: 260 :(

Bryce also managed to catch Vance's cold last Thursday. He had a fever all day but never went over 100.9, the magic ER number being 101. Friday it was gone. He is feeling much better now, in fact he is screaming to go outside and play! That we can do as long as it's not with anyone else but brother.

An upcoming event for Bryce will be a "radio-thon" with station B106.7 sometime during the first week in March, probably that first weekend. It is a fundraiser for the Children's Hospital. They will very briefly interview Bryce, as well as other past and current patients, and we will have Vance there as well to fill in in case Bryce clams up. I'm sure Vance will have plenty to say. When we get a set time that we will be on I will post it.

Bryce got a neat looking reversible cape at the clinic yesterday. It has Batman on one side and Superman on the other. Now he can pretend to be them by putting the cape on instead of wanting to change back into his pajamas at 11 am. See pictures!

Nothing major this week other than the colds for the kids. Bryce is still losing his hair, where it is becoming very thin on top! I have tried ALL WEEK to upload valentines day borders on this page, other images, music, but.... I am very frustrated and cannot get it to do anything. Jennifer Holbrook, thank you so much!!! is going to put a Valentine's Day border on for me sometime soon! Thank you Jenn!

Since we are pretty much housebound due to Bryce's low ANC, we'll see you next Monday! Keep a look-out for the music. Maybe some kind soul will help the computer dysfunctional!









Love
Tina, Rodney, Vance and Bryce

*Since writing this I did it! I actually added the soccer ball and the Valentine dog and it only took all day long!

Tuesday, January 25, 2005 2:39 PM CST

Back from the clinic. Today we had our blood work done and Bryce received his IVIG to help boost his immune system. IVIG is not a chemo, but a blood product. His counts looked surprisingly good, but the steroids he has been on the last week can do this. They were:

WBC: 3.3
Hemoglobin: 12.2
Platelets: 424,000
ANC: 2409

Bryce had a yucky Thursday-Saturday, as the effects of his last dose of chemo really seemed to hit him hard. Not throwing up but sleeping lots, rare for Bryce, and just wanting to be held. On Sunday he perked up though.

Bryce's food craving this week has been mashed potatoes and gravy. We have been to KFC 4 days in a row. They are starting to look at us weird! Also, bacon. We've been through 2 packages of bacon this week. This has added to gaining another 1/2 pound of weight to a grand total of 30lbs! This is what Vance weighed when he turned 3 so I feel better, but now he needs to grow about 2 inches to catch up with his weight gain.

As you can see in the picture, Bryce received a CD made about him by an organization called "Songs of Love". It is the sweetest song made all about him and we even brought it to the clinic for the nurses to hear. They loved it! Since I am really computer illiterate in many areas. I have no clue how to put music on this website.
In fact, we can't get the computer to even play a music CD right now! Maybe I'll get it figured out by next week or I will have Rodney add it to the website at his school or we'll put a link to it at the bottom of this web page.

Not too much happening this week. We will be back on our Monday schedule next week. It will be a very long day. A spinal with chemo, where they knock him out,cyclophosomide, where he has to be hydrated with IV fluid for about 2-3 hours before getting this chemo, and we start ARA-C. This one is 4 days in a row, 3 of them done by us at home. His port will be accessed (where the line/tubing is left hanging out) and we will give him about 10 minute infusions. We also start another drug called 6-TG, it's by mouth. Last time this one made Bryce throw up every morning, hope that's not the case this time. Since we will be back on schedule by going on Momday, then it's only 33 more days until maintenance!

Please say a prayer for us that we continue to stay on schedule for next Monday. Vance has been fighting a minor cold, so we pray Bryce doesn't pick it up!

Love
Tina, Rodney, Vance and Bryce

*ITS 10:30 PM ON TUESDAY NIGHT AND OF COURSE BRYCE IS NOW UP. JUST WANT TO ADD THAT YOU SHOULD ALL ENJOY THE PICTURES OF BRYCE'S HAIR THIS WEEK. I JUST DISCOVERED PIECES FALLING OUT :( HE MIGHT BE BALD NEXT WEEK!

Monday, January 10, 2005 12:49 AM CST

We're back from the clinic. Day 7 done. Things went smoothly. His counts are :

WBC: 4.9
Hgb: 11.7
Platelets: 275,000
ANC: 4067

His WBC and ANC are up due to the steroids. Last time we did our delayed intensifictation in September it was WBC 11.1 and ANC: over 11,000! It looked better this time. He received vincristine and doxorubicin and this morning was the last dose of steroids for a week.

"Roid rage" has been better the last few days, but he is eating a huge amount of hot dogs. In fact today was 17 hot dogs since last Monday. That means..hotdogs at breakfast, lunch and dinner, most often 2 at a time. We do manage to have a bowl of cereal along with the hot dogs or some grapes and bananas. The steroids do this. They usually love salty foods, hot dogs being one of them. In a week he has gained a pound and a half, so he is up to 29 and 1/2 pounds. From the above picture you can see he is stuffing his face with crackers.

Not much new, only Vance's approaching b-day party.It looks like Bryce will get to go. We have been trying to dodge getting sick. Rodney got a cold last Wednesday, so he slept by himself for 4 nights. Then today Vance wakes up with puffy eyes and sneezed about 30 times from getting up and getting to school. Called to check on him and they said he was fine. Go figure...

Bryce has been hysterical lately, talking about things a mile a minute. He had 2 tired mornings where he took early naps and moped around, but he is feeling better now. He mastered most of the equipment on Vance's playground at school. When his counts are up I let him play for a while when we are picking up Vance. The kids follow him all around and want to play with him. Hopefully Bryce will be in Mrs. Prince's class next year, so he will know some of the kids in his class the following year. (it's 3 and 4 yr olds, so the 4's turning 5 like Vance will be going to 5K next year).

It's been peaceful w/ only 1 child during the day. Bryce actually took a nap this afternoon so I am able to update early. Our next clinic visit will be next Tuesday due to Martin Luther King Day and the clinic being closed. Rats, that puts us behind 1 day, so as of today it's still 50 more days to go. I will update next Tuesday after our appt.

Hope everyone is doing well. Thank you again for thinking and praying for us. Just pray for minimal side effects for Bryce and he continues to keep his cheery disposition!

Love
Tina, Rodney, Vance and Bryce

Monday, January 10, 2005 12:49 AM CST

We're back from the clinic. Day 7 done. Things went smoothly. His counts are :

WBC: 4.9
Hgb: 11.7
Platelets: 275,000
ANC: 4067

His WBC and ANC are up due to the steroids. Last time we did our delayed intensifictation in September it was WBC 11.1 and ANC: over 11,000! It looked better this time. He received vincristine and doxorubicin and this morning was the last dose of steroids for a week.

"Roid rage" has been better the last few days, but he is eating a huge amount of hot dogs. In fact today was 17 hot dogs since last Monday. That means..hotdogs at breakfast, lunch and dinner, most often 2 at a time. We do manage to have a bowl of cereal along with the hot dogs or some grapes and bananas. The steroids do this. They usually love salty foods, hot dogs being one of them. In a week he has gained a pound and a half, so he is up to 29 and 1/2 pounds. From the above picture you can see he is stuffing his face with crackers.

Not much new, only Vance's approaching b-day party.It looks like Bryce will get to go. We have been trying to dodge getting sick. Rodney got a cold last Wednesday, so he slept by himself for 4 nights. Then today Vance wakes up with puffy eyes and sneezed about 30 times from getting up and getting to school. Called to check on him and they said he was fine. Go figure...

Bryce has been hysterical lately, talking about things a mile a minute. He had 2 tired mornings where he took early naps and moped around, but he is feeling better now. He mastered most of the equipment on Vance's playground at school. When his counts are up I let him play for a while when we are picking up Vance. The kids follow him all around and want to play with him. Hopefully Bryce will be in Mrs. Prince's class next year, so he will know some of the kids in his class the following year. (it's 3 and 4 yr olds, so the 4's turning 5 like Vance will be going to 5K next year).

It's been peaceful w/ only 1 child during the day. Bryce actually took a nap this afternoon so I am able to update early. Our next clinic visit will be next Tuesday due to Martin Luther King Day and the clinic being closed. Rats, that puts us behind 1 day, so as of today it's still 50 more days to go. I will update next Tuesday after our appt.

Hope everyone is doing well. Thank you again for thinking and praying for us. Just pray for minimal side effects for Bryce and he continues to keep his cheery disposition!

Love
Tina, Rodney, Vance and Bryce

Tuesday, January 4, 2005 0:10 AM CST

We have finally started Delayed Intensification #2! Yeah! Bryce's counts looked pretty good today. They were (by memory here):

WBC: 3.4
hemoglobin: 12.2 (normal again!)
platelets: around 250,000
ANC:1330

We even found out that Bryce has actually grown some. He finally has made it into a percentile on the growth chart, b/tn 3-5% for height and weight, but hey, I was thrilled! We've been worried about Bryce not growing since diagnosis. Since he has grown and his weight has gone up almost 2 lbs. and has stayed there, they have increased the dosage of his chemo. I'm a little worried about side effects since he has handled things so well, but we have wonderful doctors who will monitor him carefully.

Today he had what is like a spinal tap, but when they take out fluid, they replace it with chemo.This amount went up from 10mg to 12 mg. We also started steroids today for a week, which will make Bryce really.....hungry. This amount went from 2.25 to 2.75.

We also received chemos called vincristine and doxorubicin. Doxorubicin is the one that will make Bryce's hair fall out again in about 3 weeks, if he follows the same pattern he did last time. Bryce likes his new hair, he always tries to brush it when he goes in the bathroom and Rodney even put some of his hair gel in it yesterday to spike it up. At the clinic, everybody kept touching his head and commenting on his hair. At least this will be the last 2 months w/out hair until he's an old man!

We've had a relaxing break. Vance goes back to school on Wednesday and Rodney went back today. Back to reality! Now we are going to the clinic every week, on Mondays.

Vance's 5th birthday is coming up on the 14th so he is VERY excited. He is counting down the days until his birthday. He insists that when you turn 5 you now know how to do everything, watch out!

Other than that, not too much excitement on the homefront. We did manage to put in our new countertops in the kitchen. That was after Rodney got 2 gashes across his shins trying to kick out the kitchen sink. It worked though. I told Rodney I wouldn't put the digital camera picture of him w/ frozen packages of green beans across his legs on the web site. He blames it on me, b/c kicking the sink from underneath the counter to get it out was MY idea. It worked though!

Hope everyone has settled into 2005. Thank you so much for your continuous thoughts and prayers. The next 56 days will be tough for Bryce, but then the worst (we hope) will be over!!!

Love
Tina, Rodney, Vance and Bryce

Tuesday, December 28, 2004 3:52 PM CST

Happy upcoming New Year! We had a very busy, but nice Christmas. We did manage to make it to all of our stops, and even went to visit Aunt Stacey and Uncle Clay in Rock Hill to see our new baby cousin Ella Grace, born December 22nd.
Poor mommy started to come down w/ some sort of sinus thing on Thursday, but went to the dr and got some antibiotics and was fine, so we made it through the holiday.

The boys received tons of good things! Bryce's big gift was a riding electric four wheeler, and Vance received an ESPN game center, the kind where he actually "plays" 6 different sports. It takes up a lot of room, but folds up to be very compact.
Of course since we had cleaned out the playroom, it is now filled with new toys!

We had our clinic visit today. We DID NOT start our next round of chemo due to low counts, just the WBC/ANC was low. The rest were normal! They were:

WBC: 2.4
hemoglobin: 12.4
platelets: 405,000
ANC: 552 :(

To start the next round it has to be 750. This means he is what is called "neutropenic" and we need to "stay away"!!! Remember it needs to be at least 1,000 for crowds. It's better anyway since it seems lots of adults are the ones who have been sick lately. Poor Grandpa Phil, if you're reading this, hope that you feel better (he's got the flu in NJ!).

Bryce did get his IVIG today, which is immunoglobulin. This is the first treatment of it. It is not chemo, but a product of blood that will help boost his immune system. Unless he has a reaction to this, he will continue it once a month during treatment. We go back on Monday, January 3rd to try again, and will meet our health insurance deductible and maybe out of pocket max for 2005 in one trip.

We hope you all have a blessed New Year and maybe next year will be much....better than this one! Hey, only 2 1/2 more years of treatment to go!!!

Love,
Tina, Rodney, Vance and Bryce

Tuesday, December 21, 2004 2:33 PM CST

Just a short but good update today! Bryce had his surgery for his tubes in his ears today. All went well. We were home by 9am (we went in at 6:45). He came home and ate fruit loops. a piece of cake and french toast!

We also got the news back that his echocardiogram was normal! YEAH!!!!!!!

Now we will not go back until Dec. 28th for our very long visit. That will start our last intensive phase that lasts for 56 days called Delayed Intensification. Afterwards will be maintenance until June 2007! Yes, 2007, chemo for that long, but only monthly visits instead of weekly (hopefully).

We are anticipating Santa at our house and had to "call" him twice to tell him Bryce wouldn't take his medicine. Works like a charm! I guess we'll have to move on to the Easter Bunny after Christmas.

As long as everyone stays healthy ( and everyone where we're going to ) does too, we will be visiting family in Elgin for Christmas.
I will try to update with some new pictures soon!

A special thank you to the members of our church and especially our care team for the special Christmas thought, prayers, and special extras! You are very dear to us!

Happy Holidays!

Love,
Tina, Rodney, Vance and Bryce

If you haven't caught up on Bryce lately, read the last entry about Bryce's chair adventure.

Thursday, December 16, 2004 9:53 PM CST

Bryce has had his echocardiogram done and today we visited the ENT. No obvious signs of damage from the echo, according to the tech, but the cardiologist will compare readings from March and yesterday and report to the oncologist. No word from the clinic, so no news is good news. I will call tomorrow to be sure of the results. Surgery for his ear tubes will be next Tuesday.

Of course where ever he goes, Bryce wins over the nurses/staff. During the echocardiogram, Bryce was looking at the screen and whenever the red and blue would show up for blood flow he would shout, "There's Spiderman!" So now he thinks Spiderman lives in his chest. Afterwards when the tech went to wipe the "goo" off his chest he politely told her "Thank you". This made her to turn to goo herself. Bryce asked her for a band-aid to cover his port, although it hadn't been accessed, and the tech proceeded to bring back a band-aid and about 10 different stickers for him. And on the way out...he says goodbye to everyone, even the people in the waiting room, who "ooh and ahh".

Here's a Summers' story... at the ENT's office, I had to wake Bryce up before we went in. Well we get in and the waiting room is packed. There is still a lot of open space though. Bryce I thought was going to have a tantrum, but he went and layed on the floor in front of the door of the office going out. The people are all like "Oh how cute". I drag him off the floor so he walks over to the wall and leans against it with his face to the wall. Then he lays on the floor again (which really isnt a very sterile environment!)I inform the people I just had to wake him up. Some people are like "He can lay where ever he wants, that's okay." (If only they knew!) Finally after he has moved to under my chair, I coaxed him out and some other child had a fit and turned the attention away from Bryce. Finally there is just Bryce and another older couple in the waiting room. He starts doing "magic tricks" for the couple with some building rings and announces after each time he makes something "ta-da! It's magic!" Finally in the office, we play with the chair that goes up and down. We must have hit the buttons at least 20 times to keep him occupied. Well, after Dr. Sutton comes in and Bryce is trying to hit the button another 5 times, the chair jams and breaks. The Dr. unplugged it, tried to reset it , but it's dead. Then he's like "I smell something". I told him it might be Bryce's diaper (since it's been wet forever) and he's like, "No, it's a burning rubber smell." Well, guess the chair is dead. We didn't tell him we played with it for the previous 15 minutes.

Of course when we leave it's "bye" to the staff and the people on the elevator, etc... Bryce is getting WAY to used to doctor's offices. Tomorrow we will find out the time for his surgery. It will be done at the Surgery Center by our house and with no complications we'll be home that same morning. Remember we are pros at our house with the ear surgery thing. Between both kids this is time #4 being at the surgery center. Bryce will still have to be on antibiotics prior to surgery to prevent infection, and continue for a week after, so a total of 17 days of antibiotics.

I will update after his surgery next Tuesday and hopefully have some new pictures. Please excuse my typos, which Rodney has so kindly pointed out I had many on the last update! (Hey, who types well at 11:00pm!)

Happy holidays!!

Love
Tina, Rodney, Vance and Bryce

Friday, December 10, 2004 8:31 AM CST

We had an interesting visit at the clinic yesterday. First the not so good news...Bryce's "luck" ran out yesterday. He now came down w/ a cold Wednesday afternoon, sneezing, runny/stuffy nose but no fever. At the clinic they said he now has another ear infection. The Dr. recommends us going to our ENT and having another set of tubes put in his ears before X-mas if possible. Well, of course when I call the ENT and talk to who knows, they can't get us in for an appt until Jan. 28th!!!!!!! Well, I'm going to have the oncologist call the ENT. I know our ENT knows of Bryce, we were just there last week with Vance!!!

Next his IGg level is low. This is something with their immune system. When it's low chronic infections can happen like the ear infections, respiratory things, blah,blah,blah... So now on the 28th he will receive something called IVIG, which is a product of blood that contains antibodies. It comes in the clear glass bottle and the product looks like water itself and takes about 3 hours to give.This will provide his immune system with extra antibodies it may need, and we will have it every month. So on the 28th we will have a spinal done w/ chemo, this IVIG, doxorubicin and will start steroids for a week. Fun,fun,fun....We also have our echocardiogram scheduled for the 15th to make sure no heart damage has been done from prior chemo before he starts this new phase on the 28th.

The good part is he saw Santa at the clinic yesterday and was the only kid to eat a ton of candy canes, 2 pieces of pizza and about 5 cookies, go figure....Bryce was a little skeptical about Santa but had fun anyone. They gave him 2 stockings with neat toys and a Walmart gift card in it.

We are going to stay home until Bryce's cold is a little better. His counts were good despite all of this. They are:
WBC - 4.4
hemoglobin - 9.9
platelets - 173,000
ANC - 2508

They are all down, but still pretty good. We are now taking ceftin for the ear for the next 10 days. Well, I will update after the echocardiogram next week or if anything else happens. Hope you all have fun X-mas shopping!

Oh, one more thing. A wonderful organization called Candle Lighters deals with resorces and helps patients and families with cancer. In Washington DC on the 11th they are having a X-mas tree lighting and the ornanments on the tree are gold ribbons with names of children with cancer or honoring one's who are no longer with us. I bought a ribbon for Bryce. If you are interested in making a donation to Candlelighters a ribbon can be put on the tree for Bryce and after the season they are going to mail the ribbons to Bryce to have. If you are interested the website is www.candlelighters.org/cancerawarenesstree2004.stm
You can read what I wrote for Bryce by clicking the part about reading the list and typing Bryce H. Summers, SC 3 years old. Again have a wonderful holiday!!

Love
Tina, Rodney, Vance and Bryce

Sunday, December 5, 2004 11:29 PM CST

Happy Birthday Bryce! Officially Bryce's birthday is Monday, December 6th, but we had his party yesterday on Sunday. We had such a busy weekend. On Saturday Bryce attended a b-day party for his friend Rence who turned 3 on Dec. 5th. This was the first b-day party he has gone to since this past February and been around a group of kids longer than 5 minutes. Rence and Bryce went to Ms. Gerrie's house together since they were little! It was so sweet to see them together. Rodney took Bryce to Rence's party and Vance attended a friend's b-day down the road in something called a "tumblebus". Neat concept! A gutted out school bus adorned w/ gymnastic mats comes to your house and does activities with the kids. Vance enjoyed it!
Today was Bryce's party. He asked about it all day and he said his favorite part was blowing out his birthday cake candles. We had a pinata that the kids beat on for a while until daddy gave a little help and tore some, or we would have been there forever. Cousin Thomas we thought was going to crack it open, what a hitter! We had this giant cardboard monstrosity that I created and now it is destroyed in the backyard and currently being rained on. At the end of the party they were tipping it over on purpose while inside. Bryce got lots of neat presents!
As you see from the picture, Rodney finished painting so NO MORE FRUIT WALLPAPER!!!!!!!YEAH!!!!!!! Hopefully over X-mas break the floor and cabinets will get done w/out turning into a major catastrophe project.
I am assuming Bryce's counts are still up. The mystery rash is better but still there (our indicator of counts lately). We go back to the clinic on Thursday for our last dose of vincristine and IV methotrextate, then 16 days off! Well, actually 19 b/c I very nicely asked the doc if we could wait until after X-mas to start our next yucky 56 day phase. Otherwise we would have started the day before X-mas Eve. We still also need to go for an echocardiogram before X-mas to make sure no damage has been done to his heart from prior chemo before starting the next phase. Don't know what they will do if they find any???? I will miss Bryce's new fuzzy hair! So much has come in that it was actually sticking up yesterday and you can even shampoo something.
I hope everyone has a great week. I will update Thursday evening after our dr. visit. Thank you to everyone for your kind thoughts, prayers and b-day wishes for Bryce. He has been through so much in the past year of his life.

Love,
Tina, Rodney, Vance and Bryce

Monday, November 29, 2004 5:08 PM CST

We had a great Thanksgiving and a great visit at the clinic today. We did get to go to Uncle Billy's in Rock Hill! The kids had a blast playing with their cousins. We also did get to go to the USC basketball game against Winthrop. We met coach Odom and had these fantastic seats right behind the players. Bryce and Vance could have tapped them on the back of the head if they wanted to. And of course, Cocky was the main attraction for the kids. Vance thought it was cool watching the game and being able to see it on the screen at the same time, and tell us the score every 2 minutes.
The clinic visit went well. Bryce has been having horrible temper tantrums though, so I thought it may be b/c of low counts or from his meds., but Dr. Kevin seems to think the terrible two's are hitting a year late. He said that Bryce is probably just tired of all of this, and who can blame him! So after pitching a fit for the first hour we had our spinal with methotrextate, and our 100ose of IV methotrextate and vincristine. Bryce slept great after the procedure and when he woke up was as happy as could be, and walked around talking to everyone. His weight has been staying steady, but he still hasn't grown much. He will be the littlest 3 year old you have ever seen. Today a kid at the clinic who isn't quite 2 was taller than him!
The numbers are:
WBC: 5.5
Hemoglobin: 10.9 (yeah finally up!)
Platelets: 289,000
ANC: 3520

So, it looks like B-day party is a go for Sunday. His counts will go down, but most likely not down the drain by Sunday. Also the "mystery rash" is back. When his counts are up it comes back, and when it's down it goes away. Weird.....

Bryce's b-day theme is going to be airplanes and helicopters and he is very excited! We keep telling him he better behave though!!!We have a pinata of an airplane (if it gets here on time) and Rodney is working on another surprise.

We hope everyone has had a wonderful Thanksgiving. Christmas is around the corner!! The kids have attempted to decorate our tree, you can imagine.

We are so thankful for your prayers and are blessed to have so many wonderful friends and family who are there for us!

I will probably update after Bryce's party Sunday. Have a good week!

Love,
Tina, Rodney, Vance and Bryce

Thursday, November 18, 2004 8:31 PM CST

And on day 12 the fever has waned... Vance's fever has disappeared and he has returned to his sarcastic ways, not that a 4 year old knows he is being sarcastic. After 9 breathing treatments since Tuesday, he seems to be doing better. He had a little setback yesterday. His friend from school came by to bring him a card from his classmates. He really wasn't running around, but maybe to his friend's car and back. Well,as soon as his friend leaves, he gets on the deck, has a coughing fit and throws up all over the deck. Then he says,"Mommy I just wanted to play outside. I'm NEVER going to get better!" Poor kid...

After all of Vance's tests, chest-xray (looked pretty good), complete bloodwork Wednesday (which came back norm exc. for 1 thing and that just indicated inflammation from his lungs)today he started acting like Vance. We plan on going back to school Monday.

Bryce's appt turned out very well today. He received his full dose of methotrextate and vincristine thru his IV. The only thing is a possible ear infection brewing. The dr. didn't give him an antibiotic, but that may change if he keeps digging in his ears in a couple of days. Once his cough clears up a bit more and the stuffiness fades, he can get his flu shot. For those of you who understand the numbers:

WBC: 3.8 (up from 1.9 Sat.)
hemoglobin: 9.3 ( hovering at the same level for a while)
platelets: 236,000 ( up from Sat)
ANC: 2456 (up from 1492)

I don't quite know about his hemoglobin being down for a while, but they don't give him a transfusion until it reaches 8.0 or below. He looks great, mystery rash still there though. Now we can finally get out of the house if we need to. We still don't take him to the grocery store, Walmart, etc.. b/c of so much "crud" going around. It was a miracle he only had a fever for 2 1/2 days!

Today we were asked if Bryce could represent the Children's Hospital by being highlighted at one of the USC basketball games. They will bring him out on the court, give a brief description of his type of cancer, flash his cute face across the screen, etc.. This is for children's cancer awareness and promoting the children's part of the hospital. He is one of 8 kids from the clinic asked to do it! We think it will be fun, and of course free tickets to the game.

For Thanksgiving we are going to Rodney's Uncle Billy's house in Rock Hill if we are all well. Bryce and Vance haven't seen their cousins since summer. No other big plans here, but to get back on a normal schedule and plan for Bryce's 3 yr. old BIRTHDAY PARTY! His b-day is December 6th, but I am planning a small party here Sunday, December 5th.

Bryce's next appt is Nov 28th. It will be a longer day. He will has a spinal tap done w/ methotrextate, IV vincristine and IV methotrextate. Then only 1 more treatment after that and 16 days off! Then it's Delayed Intensification #2 for 56 days and back to being in isolation at the house.

We hope you have a blessed Thanksgiving holiday and cherish the time together with your families. Thank you so much for your notes,thoughts and prayers....

Love,
Tina, Rodney, Vance and Bryce

Friday, November 12, 2004 3:53 PM CST

This has been a really cruddy week. Bryce is the one at this moment doing okay. The mystery rash is now back and his lower eyelids have become mysteriously red. The red eyelids could been a reaction from the chemo?? or he may be getting the viral crud...

Vance on the other hand has been to the doctor's office twice and now we are on DAY 6!!! of a fever. Last night (Thurs.) his temp jumped to 105 on one thermometer and the other said 104.5! The pediatrican on call said to give him tylenol even though we had just given him motrin an hour before. We had been doing it every 4 hours but it never worked well, it never went under 100. The poor kid slept in his underwear and cold rags. This morning it was normal, but even though we are going back to alternating the motrin/tylenol every 4 hours it has been trying to creep up during the day. Last check was 99.9.

He is also on albuterol for his breathing and cough. Blood work on Thursday shows it is still a viral thing. The on call doc said if he has a fever on Saturday that we need to go back.

Keeping the boys apart is near impossible. If Bryce doesn't get sick it is a MIRACLE!!

Summers moment>>>>> Bryce escaped his "area" and disappeared upstairs. I ask Vance if he is in the living room with him and he says "no". I go upstairs and where is Bryce?????? He is hiding in Vance's contaminated bed, with the covers wrapped around him. I guess Bryce is begging to be sick!

We were given some tickets to go see Elmo at the Colonial Center on Sunday. I told the kids if no one had a fever we may be able to go. I worry about other kids getting Bryce sick though, but if we stay home for the next 3 years when his counts are up and God forbid something happened to Bryce, I would feel horrible knowing he just stayed in the house for all of his life. I think if someone "questionable" sits by us, I'll just tell them that Vance just had a virus/fever all last week!! (Only kidding!)

Rodney's football team is in their first week of the playoffs. That means a maximum of 4 more weeks of football! Oh, but then basketball comes. It's only at the middle school though, and only during the week!!

I hope everyone has a wonderful weekend and a special thank you to everyone on our care team and friends who were kind to think of us during Cole's services. I only hope my children will become as strong and caring as Cole was.
UPDATE MONDAY 11/15: WE SPENT SATURDAY AT THE ER FOR BRYCE. HIS TEMP WAS UP. AFTER CHEST X-RAYS, URINE TESTS, BLOOD WORK, IT LOOKS VIRAL. HE RECEVIED IV ANTIBIOTICS. AS OF THIS MORNNING NO FEVER.YEAH. VANCE ON THE OTHER HAND WAS DIAGNOSED W/ THE BEGINNINGS OF PNEUMONIA AND AN EAR INFECTION SATURDAY MORNING(BUSY SATURDAY). HE'S ON ANTIBIOTICS AND IS OFF FOR A 1/2 DAY OF SCHOOL TODAY. I WILL UPDATE THURSDAY SINCE IT'S BRYCE'S APPT.
Love
Tina,Rodney,Vance and Bryce

Friday, November 12, 2004 3:53 PM CST

This has been a really cruddy week. Bryce is the one at this moment doing okay. The mystery rash is now back and his lower eyelids have become mysteriously red. The red eyelids could been a reaction from the chemo?? or he may be getting the viral crud...

Vance on the other hand has been to the doctor's office twice and now we are on DAY 6!!! of a fever. Last night (Thurs.) his temp jumped to 105 on one thermometer and the other said 104.5! The pediatrican on call said to give him tylenol even though we had just given him motrin an hour before. We had been doing it every 4 hours but it never worked well, it never went under 100. The poor kid slept in his underwear and cold rags. This morning it was normal, but even though we are going back to alternating the motrin/tylenol every 4 hours it has been trying to creep up during the day. Last check was 99.9.

He is also on albuterol for his breathing and cough. Blood work on Thursday shows it is still a viral thing. The on call doc said if he has a fever on Saturday that we need to go back.

Keeping the boys apart is near impossible. If Bryce doesn't get sick it is a MIRACLE!!

Summers moment>>>>> Bryce escaped his "area" and disappeared upstairs. I ask Vance if he is in the living room with him and he says "no". I go upstairs and where is Bryce?????? He is hiding in Vance's contaminated bed, with the covers wrapped around him. I guess Bryce is begging to be sick!

We were given some tickets to go see Elmo at the Colonial Center on Sunday. I told the kids if no one had a fever we may be able to go. I worry about other kids getting Bryce sick though, but if we stay home for the next 3 years when his counts are up and God forbid something happened to Bryce, I would feel horrible knowing he just stayed in the house for all of his life. I think if someone "questionable" sits by us, I'll just tell them that Vance just had a virus/fever all last week!! (Only kidding!)

Rodney's football team is in their first week of the playoffs. That means a maximum of 4 more weeks of football! Oh, but then basketball comes. It's only at the middle school though, and only during the week!!

I hope everyone has a wonderful weekend and a special thank you to everyone on our care team and friends who were kind to think of us during Cole's services. I only hope my children will become as strong and caring as Cole was.
UPDATE MONDAY 11/15: WE SPENT SATURDAY AT THE ER FOR BRYCE. HIS TEMP WAS UP. AFTER CHEST X-RAYS, URINE TESTS, BLOOD WORK, IT LOOKS VIRAL. HE RECEVIED IV ANTIBIOTICS. AS OF THIS MORNNING NO FEVER.YEAH. VANCE ON THE OTHER HAND WAS DIAGNOSED W/ THE BEGINNINGS OF PNEUMONIA AND AN EAR INFECTION SATURDAY MORNING(BUSY SATURDAY). HE'S ON ANTIBIOTICS AND IS OFF FOR A 1/2 DAY OF SCHOOL TODAY. I WILL UPDATE THURSDAY SINCE IT'S BRYCE'S APPT.
Love
Tina,Rodney,Vance and Bryce

Monday, November 8, 2004 2:52 PM CST

We are back from the clinic! Good news for Bryce. He had his treatment of vincristine and an increased dose of IV methotrextate. His counts were:
WBC - 5.1 (norm 4.0- 12.0)
hemoglobin - 9.4 low, down from 10.8 (norm 11.5-14.5)
platelets - 223,000 (down from 324,000 but still norm)
ANC - 3468
This was a "pre ANC" b/c they were waiting on the final reading. The final is usually a tad bit higher. Some of his other "numbers" were a bit off, things like bilirubin (Low <0.1) and Bun/Creat levels (H 46.7), but these are expected. Now we won't go back for another 10 days.

Bryce had a good weekend. Vance has not. Yesterday night Vance came down with a fever/cough. Of course I realize Van has a fever after the 2 boys have been wrestling all over one another. After a dr. visit for Van, and after strep test, and blood work. It is viral, meaning...nothing to do but wait it out. As of 4pm today, he still has a fever, 100. We found out from blood work that Van's platelets were down 132,000, but that this is normally seen in children presenting with viruses. It is almost impossible to keep the 2 boys completely separated. So now we just have to cross our fingers that Bryce doesn't come down with it too. A fever for Bryce over 101 means a lovely inpatient hospital stay.

We mangaged though to go to the Celebrate Freedom Airshow in Camden. Vance and I even got to ride in a real army helicopter, doors off and everything! Vance loved it. Bryce was too little to go on. :(

Most of our weekend has been very depressing. Our friend from the clinic, Cole Sawyer, passed away on Saturday . Cole was 11 yrs old and had a cancer called rhabdomyosarcoma, cancer of the soft muscle tissue. He was labeled cured the beginning of this summer, but the cancer returned in the beginning of September. We have put a pict. of Cole on Bryce's site in the past. We have all been so sad and upset. Cole was such a sweet, kind and courageous person. It was only a week and 1/2 ago that he was admitted, then put on a respirator and finally passed away. Two weeks ago we were all joking and laughing at the clinic about Halloween. For those of you who know Cole, his funeral is tom. at Northeast Pres. Church on Polo Rd. @ 3. There is a viewing tonight at Dunbar Funeral home from 5-7.

Well, I will update with "Vance's Viral Vacation" from school and see if Bryce has managed to avoid Vance's mystery crud. I guess I should be grateful. Vance has not been sick since May and before that it was last October.
Say a little prayer for us!

Please be sure to leave a message in the guestbook for Bryce. Bryce loves to find out who wrote him a note!

Thank you so much to everyone for thinking and praying for us!

Love
Tina, Rodney, Vance and Bryce

Thursday, November 4, 2004 7:54 PM CST

Well, thank goodness it has been an "uneventful" week here. Monday we went to the zoo. We had a nice day walking around (Bryce was "strolled" most of it). I managed to walk down the nature/scenic route from the gardens. At least I had a small little stroller so I could lift it over steps and fallen trees! I managed for Bryce to be still for 30 seconds to take a picture. The photo album has one of him on the carousel. I am experimenting with a new digital camera, thanks to Jennifer Holbrook! THANK YOU! Once I figure it out it should be easier to take pics.
Actually, oh I forgot, some excitement happened. We went to get Vance's haircut Tuesday and found out while we were there that one of the girls who cut hair was sick and the Dr. hasn't figured out what is wrong with her. Automatic panic...Anyway, she is such a sweet girl and stayed away from Bryce and even went outside. They were going to call if it was something highly contagious, which as of today it's not.
The mystery rash on his face is looking so much better due to the steroid cream. Now I am constantly applying band-aids over Bryce's bug bites so he won't scratch.
This weekend we MAY attempt to go to an airshow. Vance went last year w/ his nannie and papa and loved it. I won't be able to let Bryce go look inside the planes though. God forbid who sneezed/coughed all over the place before he went in. I know I may sound paranoid, but Bryce is so susceptible to infections, even w/ an ANC over 1000. If somebody has chicken pox or shingles it can be life threatening to Bryce. Even being around someone who has recently had "live" vaccines like the Flu Mist, MMR or chicken pox vaccine could give it to Bryce. Many kids have their entire immunity to certain diseases destroyed during treatment, even though they have had their shots as a baby. I hope to have him tested for this when he goes off treatment in 2007!! and then I believe he still has to wait 6 months before receiving any vaccinations at all.
Hope everyone has a great weekend. I'm feeling kind of rough due to eating the kids Halloween candy. I will update Monday after our clinic visit for IV vincristine and methotrextate (this one if his ANC is above 750).

Thanks for the journal entries! We love reading them!
Love,
Tina, Rodney, Vance and Bryce

Monday, November 1, 2004 7:42 AM CST

Thank goodness Halloween is over!(haha) The kids had a great time, but mom and dad are tired! On Friday night we went to a "Halloween Castle" with one of Vance's friends from school. The kids got to see Elmo and Winnie the Pooh too. That went well until it was time to leave. Vance had a fit and Bryce decided to scream bloody murder in Barnes and Noble Bookstore (you know how quiet it is in there!)Well, after literally dragging them to the car, we all calmed down. On Saturday we mostly relaxed.

Halloweeen was fun, it wore the kids out. First we went to a Halloween party. We rode hayrides and painted pumpkins. Then we went home to meet dad and went trick-or-treating. Vance was hysterical. He kept asking the people, "What's going on in there?" if he heard spooky music at the door. Bryce became a little scared and said a few houses were too "spooky" so he stayed in the wagon for some. Finally we made it to "Ms. Gerrie's House". Gerrie watched Bryce from when he was 7 weeks until he became sick and watched Vance for a year too. Bryce was so excited to see her and the rest of his friends.

We borrowed Gerrie's golf cart and rode that home! It's equipped with headlights, tailights, horn, so Vance honked at any stray trick-or-treaters on the way back. Now Bryce has stared out the window at the golf cart begging to go and ride again! The boys were wiped out and fell asleep as soon as their heads hit the pillow, but alas, they were up at 6:00am.

We do not go to the clinic this week for treatment b/c we are on a 10 day scedule through X-mas time. we will go back Monday and get chemo if his ANC is 750 or greater. Bryce's last counts were good on Thursday. His ANC was 1272 (needs to be 1000 to go out) but it will probably be dropping down by tomorrow. The mystery rash is about the same. We are using a steroid cream on it, which makes it look better for a while.

Since it is suppossed to be 86!!!! degrees today, I think I will take Bryce to the zoo for a while. Hope everyone has a great week. I will probably update around Thursday with some zoo pictures.

Please bare with me if I haven't updated by next week though. My LPT port and printer aren't working, and I think the screeen is about to go b/c it gets tons of fuzzy lines while I try to type. I may have to bring it in for repairs or send this one to "computer heaven".

Thank you to EVERYONE for your thoughts and prayers! We need them! Also we have thouroughly enjoyed all the meals NEPC has been bringing. It truly is a big help and one less thing to worry about.

Love,
Tina,Rodney, Vance and Bryce

Thursday, October 28, 2004 5:54 PM CDT

Yeah! We finally started Interim Maintenance #2! This phase will last 56 days, depending if we are on schedule with counts each time we come. Bryce gets a drug in escalating amounts called methotrextate through an IV. The first dose he had in this phase is 2/3 of the maximum dose he received on interim main. #1. This will probably mean that his counts won't be as high as I anticipated they would be over the coming holidays. Figure it as last time, he received this chemo drug in 5 doses. Instead of starting on the amount he received the first time in dose 1 (of interim main. #1), it's like starting out on the amount in dose #3. Unfortunately, it makes him sick the next day. I will be sure to give him his "throw up medicine" called zofran. He will also receive vincristine each visit and another spinal on day 30.
The good thing is we only go every 10 days now instead of 7.

His counts are up! The numbers are:
WBC - 2.4 (norm 4.1)
Hemoglobin - 10.8 (norm 11.4)
Platelets - 347,000 (norm 150,000-450,000)
ANC - 1,272 (needs to be at least 1,000 to go out in public)

Bryce's ANC will allow us to have a "normal", whatever that is?, Halloween. Bryce loved trick-or-treating at the hospital. We got to go visit the lab, pharmacy, all the nurses stations, and offices upstairs. Now I actually know what is on the 6th floor! Bryce's spinal w/ chemo went fine, although he is very difficult to wake up. We finally took a cold washcloth and rubbed it on his tummy to wake him up! His other chemo went well too. We will pray that there is NO leukemia in the spinal fluid. They will test it each time they do that procedure to make sure he hasn't relapsed in the central nervous system.

The only problem is what we call Bryce's "MYSTERY RASH". This appeared this summer and has continued to pop up all over his face. It really doesn't itch him, put it peels and is very red. Now in spots it has peeled and bled some. It's even on his earlobe. We got the okay to use his steroid cream we use on his bug bites for it. Hope it helps. We've also tried Eucerin lotion and Aquaphor too.

Well, no cuss words from the kids or other interesting stories to tell, but there's always tomorrow. We have a busy Sunday afternoon and evening planned. We are suppossed to visit a "Haunted Castle" with Vance's friend from school tomorrow evening. We will update Sunday night unless an opportunity presents itself!

Please be sure to sign Bryce's GUEST BOOK. I am going to print them out and save it for Bryce in a scrapbook when this whole leukemia ordeal is over for good! Thank you again for your kind words and thoughts. Here's an interesting quote I found in one of my "Woman magazines".

"Take a lesson from the grass. No matter how many times it's cut or trampled on, it rises again and continues. So get back up, my friend, get back up and rise again."

Love,
Tina, Rodney, Vance and Bryce

Monday, October 25, 2004 1:20 PM CDT

Back from the clinic AGAIN! Bryce's counts are ever so slowly rising. His ANC has to be 1,000 to start the next round/segment of chemo called interim maintenance #2.So far we've been postponed 2x in a row for a total of 8 days. The doc said this is normal, after his undergoing a heavy phase of chemo and he really is doing well. For those of you who understand the numbers they are:

WBC - 1.8 up from 0.9 (norm 4.1)
hemoglobin 10.4, up from 10.1,
platelets at a normal 380,000,
and ANC 810.
The dr. said he should be ready to go by Thursday. We are scheduling his procedures for 11:30 so he can "trick-or-treat" with the kids at the hospital @ 10:30.

Bryce is acting great, being his crazy self and trying to annoy poor Vance. Here's another "Summers" story... Have you ever bought something, only to open it and find someone already used it and tried to return it?? We bought a nice carpet steam cleaner to clean our gross rug. I didn't want to hire someone to come do the carpets b/c I didn't want to wonder where the machine had been prior to our house since Bryce's counts are low, etc...Well, get this monster of a box home, open it up and, the pieces are just tossed in there, bags opened and rubber banded together. To top it off there are 3 birthday cards inside for a 2 year old named Ahamed???? Well, I throw it back in the box and bring it back the next day. Of course I had managed to throw away the receipt within 10 minutes of buying it when I cleaned out my car at the gas station while pumping gas. Fortunately the people at the store were very nice and gave me a new steam cleaner, not used.

Here's one more..,I caught Vance saying not so appropriate things to his cars as he was playing. I asked him what did you say?? He said "What the heck ( yes he didn't say he#@ at least) is that? I said where did you hear that from.. He said, "You mom, you say bad words all the time!" Oh jeez, why me! I asked him when do I say those things and he told me, "On the phone. You called someone stupid." Well, I guess I better watch it. Of course after that Bryce runs around screaming "What the heck is that?"

Well, I will update Thursday evening with pictures of trick-or-treating at the hospital and tell how our day went. Keep praying for those counts to come up! It's working!

Love,
Tina, Rodney, Vance and Bryce

Thursday, October 21, 2004 7:46 AM CDT

We had a blast! Bryce and Vance had so much fun, and Vance didn't say anything about Clemson to embarrass us. I think Vance may be coming around...

We were lucky to be able to attend. Bryce's ANC was only 522, but the doc said since it was over 500 that we could go. His hemoglobin is staying pretty steady 10.1,(norm 11.4) platelets 328,000 (good-normal), but his WBC is still now only 0.9 (norm 4.1). Today's procedure for a spinal tap with chemo,methotrexate, and vincristine by IV were cancelled b/c of the low counts. We are scheduled to go back on Monday morning and try again if they are up.

As you can see in the picture, Lou signed his shirt. We also ate with Mike the Quarterback and "Wando" as they call him. I forget what position Wando played, sorry Wando! They got to see the locker rooms with the players stuff thrown all over the place! Vance said they were messy. We went on the main field and the practice fields, and then had dinner in The Zone. Here the kids ate with the players and signed t-shirts, etc... We also met "Pops", the 39 yr old player! Everyone was so kind and sweet to the kids. They just LOVED it!

We will have a pretty mellow weekend since Bryce can't go many places but around the house and through drive-throughs. Just say a prayer that Bryce's counts are up for Monday.

Thank you to everybody for all of your caring and thoughtful words, and a special thanks to the Gamecocks for their time and sincerity with the kids!

Love,
Tina, Rodney, Vance and Bryce

Tuesday, October 19, 2004 5:51 PM CDT

I had to update today just to tell a story. Bryce and I ventured outside today into the front yard. I was being the good wife that I am, and for the like the third time in my life was raking pine straw. Well, as Bryce was having fun running up and down the little hill between our house and the neighbors, he starts screaming and running over to me. I figured something bit him because he was holding his hand. It wasn't his hand but when I looked down his shoes and socks were covered with baby ants! Now if you know Bryce, anytime something bites him he looks like he has tumors growing on him from the bites.

Well, I start ripping his shoes and socks off, stripping him in the yard and as I was throwing the shoes out of my way, I threw it on top of the very tall bush in front of our house. So, if you ride by the house and see a little red shoe in our bushes, you'll know why. It will probably be there a while b/c Rodney doesn't like those shoes anyway.

After our numerous creams and some benadryl, he's fine. I got to them in time so they aren't bad. Only about 4 bites.
Bryce is acting fine! We go to the clinic for blood work in the morning to see if we go to visit the Gamecock stadium Wednesday night and eat dinner w/ the players and Lou. I will update late tom. night w/ new pictures so be sure to check on Thursday! Say a little prayer for Bryce that his counts are going up and we can go!

Thanks you for your thoughts and prayers!
Tina, Rodney, Vance and Bryce Summers

Sunday, October 17, 2004 11:16 PM CDT

Bryce had a good weekend! Saturday I actually was able to go get my roots covered up and get a haircut! Rodney and Vance made it to the Clemson game (BOO!) and a friend of ours, a survivor of ALL came over to watch Bryce for a few hours. He absolutely adores her!
Sunday we played outside. He is finally able to climb up his tree house/slide without any help! We also finished the last of his medication for the ear infection. This upcoming week we are going to the clinic for counts on Wednesday morning to see if they are high enough to go visit the Gamecocks and eat dinner with them and Lou at the stadium. This will also determine if we are having our treatment on Thursday, which will begin interim maintenance #2. I think it will be up, but I think his hemoglobin is going back down again. His lips look a little paler. That's usually how I tell. We'll just have to see.
Well, I will update Wednesday night! It is 12:30am and Bryce just woke up looking for someone to go back to sleep with him!

Lots of Love,
Tina, Rodney, Vance and Bryce

Thursday, October 14, 2004 8:31 PM CDT

Thursday, October 14th, 2004

Today was our clinic visit. Good news! His counts are starting to go up! His platelets went from 41,000 to 170,000 (normal!) all on their own so no platelet transfusion. His hemoglobin went down some 10.4 from 12.9. That’s okay though. This is about where Bryce’s hemoglobin stays. His WBC went from 0.6 to 0.8 and his ANC, the magical number that determines if we’re doomed to the house went up to 552 from, if I believe right, 259.
Now we have officially finished our phase called delayed intensification #1. If our counts are up to 750 (ANC) next Thurs. we will have a LP (chemo in the spinal fluid), vincristine and methotrextate through our port and start Interim maintenance #2. (A port is an access under his skin that was implanted that prevents him from being constantly stuck In the arm with IV’s. It sounds worse being stuck through the chest, but it is so much better than attempting to find a vein every week.)
The cancer kids have been invited to go to the Gamecock stadium next Wednesday and have a tour of the stadium, locker rooms, and meet Lou Holtz. Then they will go to “The Zone” and eat dinner with the players. We will try to go depending on Bryce’s counts next Wednesday morning! Rodney has tried to convert Vance to being a Clemson fan, so I am skeptical of bringing him b/c Vance will probably tell Lou that Gamecocks stink, Clemson Tigers rule! In fact Rodney is bringing Vance to the Clemson game this weekend.
Unfortunately Vance game home with a little cough tonight, so hopefully it won’t turn into something else, for his and Bryce’s sake! I loaded him with vitamins, tea for his cough and sent him to bed. I think he’s kind of “milkng it” though, b/c he knows he might get lots of extra “stuff” if he really is sick. If he does, then I’ll have to spoil him too. I know he feels left out sometimes. Well, hope everyone is having a good week. Thank you again so much for you kindness and messages. Keep them coming! They definitely help keep our spirits up!
I am still attempting to figure out how to get more than 1 picture on this home page!!! So..check out the photo page for new pictures!

Monday, October 11, 2004 2:12 PM CDT

Normal Blood Counts
WBC 4.0-12.0
Hemoglobin 11.5-14.5
Platelets 150,000-450,000
ANC - 1,500 and up (1,000 to go in public and do things around other people)

Back from the clinic early today! His counts are still down the toilet! WBC 0.6, hemoglobin 12.9 (b/c of his transfusion Friday), platelets 41,000, ANC 259 :(
His platelets need to be around 20,000 to get a platelet transfusion. Maybe on Thursday, but hopefully they will be up. If you read the last entry, we've had an interesting weekend. Well, no more throwing up, that part is good. As you see in the picture we managed to paint pumpkins yesterday. Right this moment he has taken every container of paint out of their box and is demanding to paint more pumpkins, although there are no more! Vance also painted one a lovely shade of gray after mixing every color. He learned a new word, that his pumpkin color was "unique". If you drive by, they are on our front steps!
The ear infection is starting to heal. I made sure they checked it before we left today. Now we take 2 antibiotics today and tomorrow, one for the ear and one we take every Monday and Tuesday to prevent pneumonia (sp?).
Hope everyone had a great weekend. I am also attempting to add another pumpkin picture to the photo album. I will probably write again Wednesday since I don't anticipate ( I say while I knock on wood) any major catastrophies happening before then!

Sunday, October 10, 2004 12:22 AM CDT

Friday we went to the clinic for a blood transfusion. Bryce was pretty tired, but perked up by the afternoon.No throwing up Friday! Last night(Sat) Rodney and I went to a friend's birthday party, and within 10 minutes of our getting back home, Bryce managed to throw up all over his poor Nannie! Then within 2 mintues later Vance managed to fall off the couch and smash his head on the table. Poor nannie and pa-pa. Other than that, their evening had went fine.
Today (Sunday)is a pretty uneventful day. Rodney is at football and Bryce is currently taking a nap. That was after Vance and Bryce starting attacking each other over a truck. Imagine trying to explain to a 4 year old that he can't hit his brother b/c his platelets are low and could cause bleeding in his head. Go figure!!
Tomorrow we go back to the clinic to get blood drawn again, and most likely platelets. We are probably going to change Bryce's antibiotic for the ear infection b/c of his tummy troubles. This is also the last night for his thioguanine, so maybe that will help with his stomach as well! At least we won't deal with that medicine until Jan/Feb.
Thank you to everyone for your kind words of encouragement! I will do my best to keep the website updated!

Hope you had a great weekend!

Thursday, October 7, 2004 10:33 PM CDT

Thank you to everyone who has had us in your thoughts and prayers! Reading your messages brings tears to my eyes, but makes me realize how many people care about Bryce.

UPDATE: Good news and bad...
First the bad. Today was clinic day. We had our chemo drug vincristine (only one more of those this stage) and our labs drawn. Our hemoglobin was low 7.7 (normal is 11.5 - 14.5), white count 0.7 (normal 4.0-12.0), platelets 54,000 ( normal 150,000 - 450,000). I gave the norms so those of you who haven't been given the honorary "parent nursing/doctor degree" would have an idea. His ANC is 329. It needs to be 1,000 to go out in public places. 1,500 starts normal range. The ANC is a number that lets you know how strong his immune system is to fight off infection.
Well, even though his "counts" are down the drain, it's to be expected so that hasn't worried us. Today's surprise was a nasty ear infection. Bryce is such a little trooper he hasn't even complained about his ear! We've been put on antibiotics. The rest of the bad news is that if he develops a fever we will be admitted to the hospital.

GOOD NEWS: NO FEVER, cool as a cucumber. We are hoping it stays this way b/c from what we heard today at the clinic, the hospital is packed solid, no rooms, and I really don't want to spend an evening in the ER waiting room.
As you may have noticed I may use sarcasm a lot! It helps my sanity. Well tomorrow we will receive a blood transfusion, and we go back Monday to have our counts done again and possible platelets.
Bryce is still feeling pretty blah from his drug thioguanine. He decided to give grandma a show while I was at Wallyworld (aka Walmart) and throw up all his pretzels! Only 3 more days of that medicine until January/February.
I've added some pictures to the web site. Some of you may have seen these before. I will attempt to become more skilled with the digital camera. We'll update tomorrow about the blood transfusion! Thank you again for your thoughts and prayers!

Tina, Rodney, Vance and Bryce

Wednesday, October 6, 2004 9:30 AM CDT

Today Bryce is a tired guy! He has about 2 weeks to go until we finish this phase of treatment called delayed intensification. Next he goes into interim maintenance for 56 days, then delayed intensification again for 56 days then finally maintenance!
The med that Bryce is currently taking this week is thioguanine. We were delayed a few days in starting it due to a pharamacy and Fed-Ex glitch. Unfortunatley it makes Bryce very nauseous each morning, and he's been sick each morning this week. His white count, hemoglobin, and ANC are decreasing too, which is expected. I can tell his hemoglobin is going down b/c he's already taking a nap at 10:30 and his little lips are pale. He is in good spirits though.
Tomorrow we have an appt. for the chemo drug vincristine. We might end up getting blood or platelets. We'll probably have to go back for those though on Friday since our appt. isn't until 1:30.
Bryce continues to be in remission. It will be seven months in remission as of October 25th. He was diagnosed on March 11th. Say a prayer for us!

Tuesday, October 5, 2004 10:38 PM CDT

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