Tracking Trace

Posted in Daily Updates by Amy Kimler on August 29, 2009

 

Trace'll in his first face off in 2009!!! It just happens to be against his friend Jack Shea :)

Trace'll in his first face off in 2009!!! It just happens to be against his friend Jack Shea ūüôā

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Trace’ll Is Back In The Saddle!!!

Posted in Daily Updates by Amy Kimler on August 29, 2009

Today was a busy day… We started out by being up at 5:45 am and heading to the cross country meet at Macon County High School. This was the first meet Trace’ll had gotten to run in and it is a 2 mile course that is a bit hilly. He did great! He ran in 19:24 min and had a lot of fun. After that, we headed to LaVergne for an inline hockey tournament that he played in. They lost the first game, but played really well and he had fun. It was very exciting to see ¬†him back on the rink after so many months. The second game their team WON and Trace’ll scored a goal and had a couple of assists. (I missed this game because I had to head back to Hendersonville to get Cole Booney to a birthday party) He came home super tired, but very happy!!

Tomorrow we have more church, more hockey games and Maddie has two soccer friendlies. (scrimmages) It is nice to be busy with ‘normal’ kid activities. It was really nice to have such beautiful weather at the end of August.

Thank you to all who continue to pray!

Amy

Maddie tapping one in the goal!!

Maddie tapping one in the goal!!

Chris and Lil' Fighter before the 2 mile cross country race

Chris and Lil' Fighter before the 2 mile cross country race

 

Cole Booney keeping an eye on Trace'll running the big race

Cole Booney keeping an eye on Trace'll running the big race

Trace'll at about mile one... notice Cole Booney checking him out in the background

Trace'll at about mile one... notice Cole Booney checking him out in the background

Radiation is Short and Sweet

Posted in Daily Updates by Amy Kimler on August 26, 2009

Trace’ll had his first radiation treatment yesterday. It took about 15 minutes and afterwards he came home, did homework at Cole Booney’s hockey practice then had his own hockey practice and did great. The only problem was he ran out of time to do the rest of his homework and had to stay up later than usual to finish. He and Maddie were both tired this morning, but made it to school just the same.

Trace’s blood cultures are still negative and that is good news. The IV antibiotics are done and he is free again.

Today the radiation only took about 5 minutes and Trace’ll said it is short and sweet!

Thank you for the continuing prayers,

Amy

There’s No Place Like Home!!

Posted in Daily Updates by Amy Kimler on August 24, 2009

The blood cultures are still negative. (good news – no germs growing) The on call doctor came in and said he wants to watch them for 72 hours. (he is very cautious, but that is okay) We get to go ahead and go home. YAY!!! I will give Trace’ll IV vancomycin at home until tomorrow night just in case. If the cultures are still negative we are done. The hospital is also going to draw more blood cultures before we leave and watch those for 72 hours. (I think this is too much of a chance for another outside contamination, but I am not a doctor and I do want to be sure…) If for any reason, the cultures are positive we will come back and have the Hickman catheter removed. Radiation starts tomorrow after school. Yay, Trace’ll gets to go to school.

The prayers are working!

Thank you,

Amy

Trace’ll Goes Back To Vandy For Some Vancomycin!

Posted in Daily Updates by Amy Kimler on August 23, 2009

Trace’ll had fever on Thursday evening.¬† He was complaining of a headache and a little bit of a sore throat. His temperature went up to 101.89. On Friday, he stayed home from school but never ran any more fever. Friday we went by the oncology clinic and they drew blood cultures from his Hickman catheter. (permanant IV – this is something that is always done if someone has a fever with a line in) On Saturday, the doctor called and said the cultures were positive. I was in Clarksville with Maddie and Chris at a soccer tournament. Trace’ll and I ended up getting to the ER about 6pm.

We finally got admittted to a room on the oncology floor about 9:30pm and Trace’ll was started on vancomycin IV antibiotic. He ended up getting very red and itching all over. This is not considered an allergic reaction but a systemic reaction and the IV continued with benadryl added. The reaction went away. More blood cultures were drawn on the off chance that the first ones were positive due to an external contaminant. The blood cultures could be positive at any time, but they can not be considered negative (no germs grow) until they have been watched for a minimum of 48 hours. (this would be Monday night) The IV antibiotics will be continued until the cultures are positive or negative. If they are negative, we will go home Monday or Tuesday. If they are positive, Trace’ll would have to have IV antibiotics for 10 days or more. In this case, we would have the line removed (this is done in surgery due to the need for sedation) since he doesn’t have any more chemo. If we remove the line he can have antibiotics at home and go back to school, cross country, hockey… Also, if the cultures are positive the lab will determine the exact germ and decide the best antibiotic to treat the infection.

Trace’ll is doing great and eating like a pig. I have been to Chili’s three times in the past 12 hours. He will begin radiation on Tuesday and went and got his radiation marks on Friday afternoon.

Congratulations to Maddie and TUSC Girls 98 for being the big winners of the Kaos soccer tournament in Clarksville! You go Sissy!!

Thank you for all of your prayers and I will keep you updated on the germ status.

Getting Back To Normal

Posted in Daily Updates by Amy Kimler on August 18, 2009

Things seem to be getting back to normal… whatever that is! It has been really wonderful to not have chemo, blood transfusions, daily injections, lab to draw, etc… Trace’ll is just getting to be a teenager for a change! ¬†He does start radiation soon, but hopefully he won’t feel bad and no overnight stays at the hospital. It won’t take 8 months either!

Cross Country practice started this week and Lil’ Fighter has been busy running on the track and doing stairs. Maddie has been right there beside him. They enjoy getting to do this together. I can’t believe they are both in Middle School. Time flies! Next week starts inline hockey and ice hockey will be close behind. Maddie is already deep into travel soccer. Cole Booney has decided to do inline hockey as well. (I think being playing with his friend Cross is what changed his mind ūüôā

Thank you so  much for all of the encouraging comments and the neverending prayers. The support is a wonderful blessing!

Have a great week!

The Kimler Family

What’s Happening This Week!

Posted in Daily Updates by Amy Kimler on August 17, 2009
Lil' Fighter enjoying the last days before school begins again!

Lil' Fighter enjoying the last days before school begins again!

On Wednesday (afternoon) Trace’ll goes in for pulmonary function tests (PFTs). This is to determine a baseline of his lung function so that throughout/at the end of radiation we can know how his lungs tolerated the therapy. Also on Wednesday he has to have another MRI. Hopefully, it won’t take over 2 hours this time. This is needed because the last MRI did not get some pictures that are needed. The doctors did not see anything suspicious, just didn’t see all the angles that are necessary. Turns out it is hard to do a scapula MRI when you don’t have a scapula!

On Friday Trace’ll will go to the radiation department and get his ‘marks’ for radiation. (not tattoos) ¬†Radiation will begin Tuesday, August 25 and continue until September 24. (Monday thru Friday except no radiation on Labor Day) We could be a little longer if we miss a treatment for some reason. Hopefully, this will not interfere with inline hockey, ice hockey or cross country! It should not interfere with school since the radiation department scheduled us for 3pm. School gets out at 2:30 and PE is his last class, so it should be ok to leave a little early without getting behind.¬†

Thank you for all of the prayers and well wishes!

Amy

Posted in Daily Updates by Amy Kimler on August 13, 2009

 

Lil' Fighter wins Bluegrass Country Club golf tournament

Lil' Fighter wins Bluegrass Country Club golf tournament

 

Trace'll doing a flip on water slide (on purpose)

Trace'll doing a flip on water slide (on purpose)

Trace'll and Cole Booney at Whitney's birthday party

Trace'll and Cole Booney at Whitney's birthday party

Posted in Daily Updates by Amy Kimler on August 13, 2009

 

Chris and Maddie

Chris and Maddie

Chris and Amy

Chris and Amy

 

Chris, Trace and Haddie Rose

Chris, Trace and Haddie Rose

Chris and Cole Boone

Chris and Cole Boone

The Good, The Bad and The Ugly

Posted in Daily Updates by Amy Kimler on August 13, 2009

On Wednesday, Trace’ll had tests and scans at Vandy Hospital from noon until after 8:30pm! (Thank you to the Carruths for keeping our other ¬†kiddos entertained and well fed) Today we met with the radiation doctor and had CT scans of lungs to get ready for treatment. The radiation doctor was able to share some of the previous day’s test results with us. The lung tumor (possibly a lung tumor) that was 20mm at diagnosis and 4mm at last check is still 4mm. Now, what this means is: 1) It is a lung tumor that is being somewhat resistant to treatment and hopefully it will shrink with radiation OR 2) it is scar tissue and will not shrink with radiation. The reason we can’t find out what this spot is – a bronchoscopy ¬†will not reach the area. (it is in the right major fissure of the lung – the doctor said it is in the outer lining of the lung) ¬†We asked if surgical removal of this area would be an option. (recurrent Ewing’s Sarcoma is not a good thing to have. It requires even stronger chemo and is not very responsive to treatment) The doctor feels this is not really an area of the lung that would be able to be removed without the strong possibility of complications. (it would definitely require a thoracotomy ¬†which is a major surgical procedure) The radiation doctor is going to discuss this ¬†with the oncologist and a surgeon to be sure this is not an option we should explore further. At this point, the total lung radiation will go on as previously planned. It will be 10 treatments (Monday – Friday) at 15 gray. (this is the term used for the amount of radiation) Following this, Trace’ll will receive 12 treatments that will be directed only at the spot on his right lung. (this will be 36 gray) We go next Thursday to be ‘marked’ for radiation. This will be literal markers and stickers rather than the ‘tattooing’ sometimes used. Trace asked Dr. Tenenholz if he would draw a dragon on his chest if he was going to tattoo him. I told him the only tattoo he is allowed to get is one that says, “I love MOM”. The radiation should start a week from Tuesday and end on September 24 if there are no delays. Just in time for Disney World!

While this was not the news we really wanted to hear… it is not bad news, either. If the ‘spot’ doesn’t shrink, we pray it is scar tissue. The bad thing is the only way to know for sure is that time will pass and the scans will show it is NOT growing. Even if all of the scans were clear, we would still ¬†have to go periodically for the next five years before Trace will be released from the care of the oncologists. The other possibility is that the ‘spot’ will go away with radiation meaning it is Ewing’s Sarcoma, but it is responding to treatment. I feel like the fact that Trace’ll has responded so well to all treatments so far leads me to believe that this is scar tissue. How could this tumor go from 20mm to 4mm with 9 rounds of chemo and not decrease any further with 5 more rounds? The doctor assured us that this is certainly a possibility. (no doctor will give you assurances when they are not certain – even if we want them ūüôā Trace’ll talked to me at bedtime and he feels like this is scar tissue because he feels so good and if it is not; then, radiation and God will take care of it. Amen!

The radiation could produce side effects such as loss of energy, shortness of breath, skin burns (probably similar to a sunburn) and pneuminitis. (lung inflammation treated with steroids and possibly oxygen for a few weeks) The side effects are unlikely, but possible. The radiation will also be reaching his heart, ribs, some of his liver and his thyroid so there are possible short/long term side effects related to this. What can you do? We all take a chance getting out of bed every morning, right? Trace’ll is very upbeat and ready to get treatment started so he can get it finished. He shouldn’t have to miss school or hockey for the treatments since they are scheduled for 3pm. Trace was very concerned about missing inline hockey or cross country. The doctor said he was fine to do any activities he wanted to do, but not push himself too hard. Yeah, this is Lil’ Fighter! I will be watching him to be sure he follows doctor’s orders.

Thank you again for your many prayers and messages. We love you all and appreciate the love and support more than we can say.

The Kimler Family

Also, for those of you who knew I might be donating a kidney… I won’t be at this time. A closer match was found and my kidney can wait until it is needed ¬†further down the road. The blessing is the person needing a kidney had three to chose from. God is Great!