March 30th update

Bennett is doing about the same. He did think he was feeling a little better than last week but still was really tired.

He went to school today. He coughs frequently. His teacher today asked if he wanted to go get a drink because he was coughing so much. He did take cough drops but those don’t help much. Hamilton has starting coughing now too so he is taking cough medicine too.

I called his pediatrician today and asked for the cough syrup tussionex. This seems to help after 2 or 3 days. The last time he took this was February 22nd. It seems like once a month he has these coughing attacks.

He has been taking allergy pills, Loratadine, generic for Claritan for about 3 weeks. We are wondering if this could make him tired. I asked his pediatrician and he thought it could. Our pharmacy indicated that normally Loratadine doesn’t cause drowsiness that was the big thing about this new allergy pill but Bennett circumstance may be different. I have decided for him not to take it anymore. It isn’t working and maybe it could be causing him to be fatigue.

We will check counts next Monday. On Tuesday, is his St. Louis appt. It’s time again for a spinal tap with chemo. We pray that his cough goes away so there will be no question of him being sedated for the procedure. I remember 3 months ago when he had the spinal tap. He was coughing than too but no congestion.

Thank you for your prayers for Bennett. Hopefully it will be feeling better soon.

Posted by Cindy on March 30th, 2009 in Updates | Comments Off on March 30th update

March 29th update

Bennett is doing fair. He hasn’t ran a fever which is good and we are very thankful. We are still concerned of his lack of energy and being tired most of the time.

The last two days, he has taken a nap in the afternoon and didn’t do much in the morning to even make him tired. He is going to bed at a decent time each night so it’s not because he has stayed up too late.

This morning he went to Sunday school and church. He did about an hour of homework and has been in bed all afternoon. He did take a couple hours nap.

He still has his cough. He is taking cough medicine besides using his inhalers. We have started the humidifier in his room all weekend.

I know the weather has been cold and yucky for him to go outside but he normally plays video games with Hamilton or figures something to release some energy but not this weekend.

He hasn’t lifted weights at night in a week. He says he just doesn’t feel up to it.

We pray that he can make it through school all day tomorrow. We hope whatever is making him tired goes away soon. We continue to pray that the tick tests are negative. I have a feeling they will be since he hasn’t had a temp since Thursday but it still makes you wonder since he isn’t himself.

Posted by Cindy on March 29th, 2009 in Updates | Comments Off on March 29th update

March 27th update

Bennett’s tests today came back Good! Amen! His ANC was up from Monday from 969 to 1,188. His WBC was 1.8 from 1.9 and neutrophils were 66 from 51. This is a good sign. His hemoglobin was 10.4 from 10.9 and platelets were 178 from 154.

He started coughing more today. It’s really consistent. The Dr. wanted a chest x-ray to verify no problems with his lungs. It came back negative. It’s the same cough that he has had the last several months. The inhalers are not keeping the cough under control. I asked for some cough medicine but didn’t realize until I stopped at the pharmacy that it was an over the counter that usually doesn’t help.

After me persisting, they did do a rocky mountain spotted fever test. I felt like that even though he didn’t have a fever today that it was better to get the test started because it takes a week to get the results. They also did a ehrlichia blood test which is another tick disease.

Bennett is still tired. He slept all the way home and took a nap when we got home. He just doesn’t have the energy that he had.

The Dr. indicated that Bennett should take his daily 6mp chemo of 2 1/2 pills tonight. Last night I didn’t give him any because of not knowing what was going on.

We pray that he starts feeling better and no more fevers. Also, that the tick tests come back negative.

“Now may God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.” Romans 15:13

Thank you for everyone’s prayers. It’s always a tough time when your child is sick.

Posted by Cindy on March 27th, 2009 in Updates | 2 Comments

Rocky Mountain Spotted Fever

We pray that Bennett does not have rocky mountain spotted fever. It’s always better to be on the cautious side. Just to refresh my memory I looked up RMSF and here are the results. I know we are doing the right thing to have him checked for this.

What are the symptoms of Rocky Mountain spotted fever?

Rocky Mountain spotted fever is characterized by a sudden onset of moderate to high fever (which can last for two or three weeks), severe headache, fatigue, deep muscle pain, chills and rash. The rash begins on the legs or arms, may include the soles of the feet or palms of the hands and may spread rapidly to the trunk or the rest of the body. Not every case of Rocky Mountain spotted fever will have the rash.

How soon do symptoms appear?

Symptoms usually appear between three and 14 days after the bite of an infected tick. Any person experiencing illness with a fever following a tick bite should consult his or her physician and advise the physician of the tick bite.

How is Rocky Mountain spotted fever diagnosed?

Diagnosis of Rocky Mountain spotted fever is based largely on the patient’s signs and symptom’s of illness. Blood tests are important in confirming a diagnosis, but treatment should begin promptly if symptoms and exposure history support this diagnosis.

Posted by Cindy on March 26th, 2009 in Updates | 2 Comments

March 26th update

Bennett is not feeling well. He came home from school today with a temp of 99.7, bad headache and feeling very tired/weak.

I was out of town but he texted me every hour with his temperature. Very stressful on both of us. He temp ranged from 99.9 to 100.4 all afternoon. He laid down and tried to rest.

I called St. Louis and his nurse indicated if his temp went up to 101 than we needed to call back or be on our way. So far it’s not reached there!

His temp was finally normal at 6:00 and he took some tylenol for his bad headache. With a temperature earlier his nurse didn’t want him taking any tylenol because of possibly masking a higher fever.

Sid and I talked today and remembered Bennett’s tick bite from last Thursday. Sid said that Bennett has the same symptoms that he had with rocky mountain spotted fever. Low grade fever, tired/weak/wore out, and a bad headache.

I called St. Louis back this afternoon and Bennett has an appt at 8:30 in the morning for them to evaluate him. We will ask for a rocky mountain spotted fever blood test. I also want his counts checked again. Bennett feels like his ANC or hemoglobin is low. With the big drop in his ANC on Monday is very concerning that something might be going on with these additional symptoms.

Please say a prayer for Bennett that this is nothing. And that his temperature will not go up and we don’t have to rush to the emergency room tonight. Thank you.

Posted by Cindy on March 26th, 2009 in Updates | 1 Comments

March 24th update

Bennett has been really tired. He went golfing after school today and yesterday. When he got home, he said he was really tired. He has been asleep taking a nap for the last two hours.

He took his weekly methotrexate pills today. He took 12 pills which he has taken this increase of 2 more pills for the last 3 times. I’m really surprised that 2 pills can make such a difference and drops his ANC from 2,325 to 969 in 2 weeks . He has been taking daily 6mp chemo pills which he takes 1/2 more pill daily to 2 1/2 pills now for the last 6 weeks instead of just two pills.

His Dr. was fine with his counts this week and doesn’t want to change anything. Plus we can wait another two weeks to check them again right before his next appt. WOW! That’s nice. His ANC had been on the higher side so she did want it closer to the 1,500 range. Just a drastic change for us in a short period of time.

It starts making me nervous when you think all of the people he is around at school and public places and his lower ANC. One little cold or fever could drop his counts drastically into a more dangerous range. We are staying positive and know that his counts need to be low to kill any lingering disease that might be hiding in his body. We pray that he stays healthy.

We are so thankful and blessed that he is feels so much better than in the months past. He is able to go to school and play sports, What a miracle and a blessing from God!

Please say an extra prayer for all the children fighting, we have met so many at the hospital and they hold a special place in our hearts.

Posted by Cindy on March 24th, 2009 in Updates | Comments Off on March 24th update

March 23rd update

Bennett is doing good. His ANC today was 969. A big drop from 2,325 two weeks ago. We believe it’s from the increased chemo which the Dr. wanted his ANC lower than what it has been the last month. His ANC hasn’t been below 1,000 since September. We pray that he doesn’t get sick since he will be more receptive.

His hemoglobin dropped to 10.9 from 11.6 and platelets were 154 from 134. His bilirubin total went down to .60 from 1.00 which is good.

We picked off a tick off his back Thursday night which has left a small spot where it’s head was stuck. We have been watching it to make sure it doesn’t change.

He started coughing some today so he began to use his other inhaler in addition. So far it seems to help, hopefully this is the trick.

Thank you for checking in. We pray for good health for you and all your family/friends.

Posted by Cindy on March 23rd, 2009 in Updates | 2 Comments

St Louis trip

We had an awesome time in St Louis for a getaway weekend. The boys had a blast! Friday, we ate lunch at Dave and Busters which had good food and a lot of cool games. We stopped by Bass Pro Shop to look around. We checked into the Drury Inn which was by the arch. We walked down to Laclede’s Landing and ate at the Skybox.

Saturday, we went St. Louis Mills Mall, of course went to Cabela’s and walked the mall. We ate lunch at Broadway Oyster which was similar to New Orleans food and atmosphere which was downtown St. Louis. Saturday night was the super cross races which was really neat. We took a carriage ride on the way there. We did a lot of walking over the weekend and every one was exhausted last night and today.

We were blessed to have such nice weather and a fun get away.
Below are some pics:

Dave & Buster's

Dave & Buster's

Dave & Buster's

Dave & Buster's

Dave & Buster's racing

Dave & Buster's racing

Drury Inn lobby

Drury Inn lobby

Broadway Oyster -downtown

Broadway Oyster -downtown

Carriage ride

Carriage ride

Carriage ride

Carriage ride



Posted by Cindy on March 23rd, 2009 in Updates | Comments Off on St Louis trip

March 19th update

Bennett is doing pretty good. His soreness of muscles/bones is getting better. He is not as tired or weak as he was in the beginning of the week. He says his ankle might be a little better. It hurts to touch it, he says it feels tingly like when you hit your funny bone.

He went to the driving range today after school and hit a bucket a balls with a few friends. He really likes it. He says he has learned to hit the ball better instead of slicing it. It all takes practice.

We leave tomorrow for a family trip to St. Louis. We are looking forward to it. The biggest thing we are doing his going to the motor cross races Saturday night. The boys have always wanted to go see them.

We pray for a safe and fun trip. And that Bennett continues on this miracle of recovery! God Bless you.

Posted by Cindy on March 19th, 2009 in Updates | Comments Off on March 19th update

March 17th update

Happy St Patrick’s Day!

Bennett is doing pretty good. He has been pretty tired and his muscles/bones have been pretty sore. He doesn’t think it’s from lifting weights. He believes after he takes steroids that his bones hurt and cause him to feel sluggish. He also indicated that his ankle is sore and is a little swollen? We hope that’s all it is and this side effect doesn’t become too severe.

On Monday, he went and played golf after school, it was such a beautiful day. He didn’t feel like it yesterday. We did go to the movies together last night and saw Taken. We liked it, pretty intense but a little different story.

Hope everyone wore their green today!

Posted by Cindy on March 17th, 2009 in Updates | Comments Off on March 17th update

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