8:00 am Bennett’s temp is 100.2.  At 4 am was 100.8.  His counts have dropped. WBC is 1.9 from 2.7.  ANC is 1,406 from 1,863.  Hemoglobin is 7.9 from 8.2. Platelets are 47 from 49.  We are waiting to see what the next step is. 

*10:00 am Bennett will have a bone marrow and spinal tap test sometime this afternoon.  These results will tell us if the cancer has returned and that’s what is causing the fevers/low counts. This is our worst fear. We want to know what is causing the fevers but praying the bone marrow and his spine is clear of leukemia. 

*1:00 pm  Bennett’s temp at 12 was 100.8.  His creatinine level was high at 1.4 which it was at .07 so they are changing some of his antibiotics around.  The creatinine level controls his kidney functions. Because of this, they are changing the meropenum to every 12 hours now.  They have changed the anti-fungal med to caspofungin as well.  He is getting this med now.  We are expecting the bone marrow/sp testing around 3.   We are not sure when we will receive pre-liminary results.  They also are going to do an extra test and send the results off for cultures which could take a couple days, (looking for infection also)  Sid and Hamilton are here.  

*2:00 pm  Bennett is receiving a blood transfusion of 1 pint of RBC. He was pre-medicated with benadryl/tylenol.  His hemoglobin was 7.9, they normally transfuse at 7.5 but the Dr. wanted to go ahead and give him a boost because he has had a trying/difficult week. His temp is 100.2.

*5:00 pm The spinal tap and bone marrow biopsy went well. It started around 3:30 and took about 30 minutes.  He is having to lie flat on his back to prevent severe headaches. The amount of spinal fluid in the spine was good.  The Dr. indicated that the bone marrow looked healthy.  We are hoping and praying this is the case.  His temp is 99.1.

*7:30 pm We have pre-liminary results from the bone marrow and the Dr. is 98% for sure that no leukemia cells were present!  Hallelujah!  Glory and Thanks be to God!  We should hear final or 100% sure tomorrow.   They are running several cultures looking for infection in the bone marrow which could take up to 5 days for results.  The spinal fluid had no infection. They will know for sure tomorrow if any leukemia cells were detected in the spinal fluid.  We are relieved with this news so far but it’s hard to get too excited yet until the final word.

We need for Bennett’s temp to get normal and stay there. We also need his counts to rise and get in a more normal range.  The Dr. is leaving him on all three antibiotics.

Bennett is feeling better!   He ate some cereal and peanut/butter jelly sandwich. It had been two days since he has ate.  He has been watching T.V. with his Dad.  Bennett’s temp is 98.4!  Hamilton is keeping everyone entertained. 

*11:30 pm  Bennett’s lower back is really bothering him where he had the bone marrow and spinal tap.  He was given oxycodone and also morphine.  His temp is 101.1.  Shoot! He is going to get tylenol. They also want to do blood cultures again.  Bennett has started itching all over his body, we are not sure if this is related to the vancomycin med that he is getting but they are giving him more benadryl. 

Thank you for everyone’s uplifting prayers.  Today was very stressful.  I know Bennett had to be worried as well.  We will be waiting anxiously to hear the final results. This day could of ended a lot differently so we are praising God for the good news so far on his bone marrow/spinal tap!  We are still fighting the unknown.

3:00 a.m. Bennett finished the IVIG and everything went well.  His temp is 102.9.  He is taking tylenol every 4 hours now for fever.  He is still receiving the two antibiotics by iv: meropenem and vancomycin. Prayed all night that the fever will go away.

*6:30 am Bennett’s temp is 102.7.  Tylenol isn’t taking it down. His counts varied a little today. WBC is 2.7 with an ANC of 1,863. It’s still a possibility that WBC is elevated because of him still running a fever. Hemoglobin went down to 8.2 from 8.5 and platelets are 49 from 50. It is concerning that his hemoglobin and platelets are low; normally they are not affected by fever alone.  The chemo he has had recently doesn’t affect these counts.  He hasn’t had any chemo pills since last Wednesday. 

His skin irritation/sunburn on his legs/arms are a lot better. Dr.’s do not think the fever now is from that. It was a possibility that his legs were infected and got into his blood stream but if this happened than it would show up on the blood cultures and the antibiotics he is getting are strong and would of killed that type of infection.  The urine test from yesterday came back negative. Waiting on viral tests.

*10:30 am Bennett’s temp is 103.6.  He is going to get a CT scan sometime today. He cannot eat/drink anything. He doesn’t feel like eating anway.  We are almost to the point that we need something to show up that’s wrong, of course praying nothing serious.   Dr. indicated he doesn’t have any symptoms or showing any signs of infection really.   He’s been awake a few minutes for the Dr. to do an exam and he feels crummy.  

*1:30 pm Bennett’s CT scan is scheduled for 2:00. He is trying to drink the contrast stuff for the scan but has already gotten sick. He was given zofran to try to calm his stomach down.  His temp is 102.9.

*4:00 pm Bennett’s temp is 102.9.  The CT scan was completed around 3:00. We are waiting on results. Bennett will be starting an additional antiobitic called amphotericin which is an anti-fungal drug. He is being pre-medicated with benadryl and tylenol to help with an allergic reaction. With most antiobitics there are minor and severe side effects. Praying Bennett doesn’t get any.  They are giving him this just in case there is a fungal infection that maybe isn’t being detected and will take away the fevers.

*6:30 pm  Bennett had an allergic reaction to the amphotericin, he began shaking uncontrolably called rigors. The nurse reacted quickly and gave him demerol.  He will now receive demerol before the dosage.  Bennett’s temp is 102.0. They have been checking his vitals every 15 to 30 minutes. It takes about 2 hours to administer and we have about 20 minutes left.

The Dr. indicated that the CT scan results were negative from the report but he wanted to review with the radiologist. The CT scan was of his chest, abdomen, and pelvis.  They want to do a MRI of his brain and will do that tonight or tomorrow.

We just got another roommate and it is a 2 year old boy that was just diagnosed today with leukemia from northern IL. Please say a prayer for him and all the children on 9west.   

11:00 pm  Sid and Hamilton surprised us tonight by coming to see us.  It was Great to see them.  Bennett had a MRI done around 9, it took about an hour. Sid and I went down with Bennett. Hamilton hung out with Bennett’s nurse and also  played with a patient next door that is his age.

Bennett fell asleep during the MRI. When it was over, he was ringing wet.  When we got back up to his room, his temp was 99.7!  Amen!  This is the lowest it has been in two days!

We received pre-liminary results from the MRI and they were negative.  They couldn’t read the pictures very well around his sinus area because of his braces.  The Dr. will review this test further tomorrow.  We have received 2 out of 3 viral tests results back and they are negative.

Thank you for everyone’s prayers for our precious boy.  He has fought so hard and come along way in the past 15 months. We have faith in God that he is going to perform a miracle with Bennett, getting rid of the fever and keeping him in remission forever.

7:00 am Bennett’s temp at 4 am was 102.0.  He was given more tylenol.  He had a headache too so he was given oxycodone.   We are hopeful that maybe it had to go up to officially break for good.

Good news that his counts have gone up some.  WBC is  2.7 from 2.1.   ANC is 1,998 from 1,302. Hemoglobin is 8.5 from 8.0 and platelets are 50 from 48. We are glad that they have slightly gone up.  It has kept him from getting a blood transfusion plus hopeful that they are on the mends.

*11:00 am  Bennett’s temp is 101.5.  At 9am it was 101.1 and took more tylenol. So now he is continuing with a temp with taking tylenol.  Another headache, more pain med.  They just took another blood test and will be looking to see if his immunoglobulin is low.  Immunoglobulin is made from the B cells of the white blood cells and if it’s too low it will not fight off any infection or bacteria. They also are doing a urine test to see if signs of infection are there. We hope to have these results back today. We found out that the virus tests that were drawn yesterday will not come back until tomorrow.

*3:00 pm Bennett’s temp has gone down to 100.2. We received the results back on the Immunoglobulin (IGG) test.  Bennett’s was 396 and normal range is 600 to 1,800.  Your IGG can be lowered by chemotherapy.  They will infuse immune globulin to him sometime today. (This is boosting his immune system.)  This is a type of transfusion. As with anything; there are always a chance of minor and severe side effects.  We are praying that Bennett has no side effects and that the increased IGG will help fight off any infections. It could take up several days or week for his IGG level to improve.  Please say an extra prayer for Bennett. It is always concerning in doing something different for the first time.

Bennett just woke up for the first time day and is watching t.v. He hasn’t ate anything yet, he says he’s not hungry.

*9:00 pm Bennett’s temp at 8 was 102.4.  He also has another headache.  They started the IVIG (intravenous immunoglobulin) infusion at 8:30.  He got tylenol and benadryl to help him if he does have an allergic reaction.  They check vitals every 15 minutes, 30 minutes, and than every hour to make sure his body is accepting it.  It will take a minimum of 6 hours to complete this evening so we might be done at 2:30 am.

Bennett has been extremely tired.  He has rested most of the day.  He was even too tired to watch t.v.; he tried for about 15 minutes earlier in the day but was ready to close his eyes again.   He feels worse today.   

*11:00 pm  Bennett is doing good with the IVIG.  His blood pressure is staying low.  His temp is 101.7.  Blood cultures were taken again at 9 pm to continue to check for infection/bacteria.  We almost wish something would show up on these so we would know what is causing the continous fevers.

Thanks for checking in and your comments as we fight the unknown.  I know everyone has their own trials/tribulations of their own life to deal with. May God bless you. May God be with Bennett and make him well.

8:00 a.m. Bennett hasn’t had a fever since last night! We just got back from him having an ultra sound of his abdomen and a chest x-ray.  This is to make sure there is no signs of infection on his kidney’s, liver, pancreas, lungs, etc.  Please pray for no infections.

His WBC today is 2.1 from 2.5. We don’t know the ANC yet.  His hemoglobin is 8.0 from 8.2 and platelets are 48 from 55. We were glad to see that they did not drop as much. 

We were hoping to go home today but he has to be fever free for 24 hours. Also, now we have to see what the results of the tests show.  Since he had to get up early for the tests, he has already ate cereal for breakfast.  He is feeling pretty good.

*9:00 am  Bennett’s ANC is 1,302 from 1,700 yesterday.  His temp is 99.3.  He has gone back to sleep.

*12:15 pm Bennett’s temp is 99.9. We are thankful it is not higher but do pray that it would go to normal.  His nurse just did a blood draw to check for viral infection.  We hope all these tests come back negative but we do need to figure out what has caused the temp and his counts to continue to drop. We pray for nothing serious. 

*3:30 pm I just took Bennett’s temp and it is 100.9.  I check periodically because the nurse only checks it every 4 hours.  A lot can happen in that time.   The ultrasound came back normal, the only note was that he has a larger spleen but his could just be a little bigger.  The chest x-ray came back normal.  Amen!  The viral blood tests will not be back until tomorrow. There are three different viral tests.

Below are the Lindenwood University hockey players from St Charles, MO that came to the hospital today.  They won 2nd place.  Guess who got 1st?  University of Illinois!  It was funny when we told them we were from so IL. They said as long as your not an Illinois fan?  Bennett said he wasn’t but got caught when he took off his blanket for the pic and he had his UOI shirt on.

*9:00 p.m.  Bennett’s temp at 8:00 was 101.5. He got more tylenol and another blood culture ran.  This marks the fourth one and the last three haven’t showed anything.  They do a new one after 24 hours if a fever is still present to make sure nothing new will show up.

This is concerning of what is causing the fevers.  It does seem that the antibiotics are helping and the higher fevers are not as frequent.  He hasn’t really made it to a normal temp yet so this tells me the fever actually hasn’t broke yet.  

He had a pretty bad headache around 6 tonight and took some oxycodine.  Other than that and being tired, he doesn’t really have any pain.

God, please hear and answer our prayers.

7:30 a.m.  Well we’re not starting off the day any better.  Bennett’s temp at 4 am was 103.1. The nurse did another blood culture.   He was given more tylenol. The only med they give for fevers is tylenol.  At 6 am his temp was 102.2.

His counts dropped again. WBC are 2.5 from 3.6.  We don’t have back the ANC yet.  His hemoglobin is 8.2 from 8.7.  Platelets are 55 from 78.  Dr’s have indicated that his counts could be dropping because of his fever.   The blood cultures are still coming back negative.  These are checking for bacteria and fungal infection in the blood.   

*11:30 a.m.  Bennett’s temp has gone down to 99.7.  We are praying it stays low all day!  His Dr. says she thinks the fever might be caused from his burn/rash on his legs.  His legs were possibly infected and went into his blood.  She’s not going to change his antiobitcs since the cultures are coming back negative.   

His ANC is 1,700.  He has gone from 3,500 to 1,700 in two days. So it does seem that his WBC was elevated because of infection.  Our body does this too but we just don’t know it because we don’t have CBC tests done. We are praying that his counts stay stable.  If his hemoglobin or platelets keep dropping he will need a blood transfusion.

His arms looks a lot better.  His legs are gradually improving. Dr. said it could take several week for them to heal.  Anytime he gets a cut, bruise, or scrap on his body, it takes a  long to heal and usually leaves a scar.

*5:00 p.m.  Bennett’s temp is 99.7.  It was at 100.9 at 2:15 but ended up coming back down without tylenol.  Dr’s don’t consider a fever until it’s 101.  He has been up watching t.v. most of the afternoon.  He is eating pretty good.  We are praying for no fever the rest of the night so we can go home soon.

*8:00 p.m.  Bennett’s temp is 100.2.  He is feeling pretty good.  He wants the room dark and quite though.  He has been watching the Cubs/Cardinals game.  Cards won!

*10:00 p.m. Bennett’s temp is 101.1.  I thought he was getting warm again.  He just got tylenol, he hasn’t had any since 4 a.m. so we thought he might make it through the night. I was still concerned though that he has had a low grade through out the day. Usually when his fever breaks, it will go to normal and stay there.  His temp normally stays closer to 97.6.   

We are praying the cultures continue to come back normal and his fever goes away. Please pray for all the children that live life with a disease; there’s nothing like it.

8:00 a.m. Bennett’s temp is 102.2 this morning so they gave him more tylenol.  It was 101.3 at midnight.  They also drew more blood cultures since he is still running a temp after being on antibiotics for 24 hours.  The first blood culture has been negative!

Bennett continuous itching from last night finally went away and he says he doesn’t itch this morning. Dr.’s are unsure what caused this because he had no redness/rash.

Bennett’s counts are taking a nose dive.  concerning.  His WBC went from 5.0 to 3.6.  And his ANC is 2,520. There is a good possibility that his WBC is elevated trying to fight off an infection. The more antibiotics he gets hopefully will kill the infection. Than his WBC might keep dropping to give a true ANC until the infection is gone.  Hemoglobin dropped from 10.3 to 8.7 and platelets from 102 to 78.

*1.00 p.m.  Bennett’s temp was 101.3 at noon.  He was given more tylenol. He also received his antibiotic meropenum.  His skin irritation/sunburn is looking gradually better. We are putting the steroid cream on it twice a day.  He has slept all morning and just got up and ate some cereal.

*7:00 p.m.   Bennett’s temp had gone down 99.3 around 4:00. We just checked it and it has gone up to 101.7 so he was given more tylenol.  He has been awake most of the afternoon watching t.v.  Too bad for the Cardinals – losing to the Cubs. Bennett ate a hotdog while watching the game; he said it will help him pretend he’s at the game.

*12:00 midnight  Bennett’s temp is 100.4.  He started itching again all over his body about 9 pm. He had to wait until 10:30 for another dose of benedryl because he can only get it every 6 hours. He was feeling pretty good.

Thank you for checking in on Bennett and your love and support.

8:30 a.m.  Bennett was admitted to SLCH about 3 a.m.  In the afternoon, he started running a low grade fever. He felt really bad and had a severe headache.  He laid in bed all afternoon/evening.    By 9:00 p.m.  it was 102.2. We arrived at the emergency room around 11:00. 

His ANC is 3,200!  This is good news. This means he has wbc to help fight off any infection.  His hemoglobin was 10.2 and platelets 102 which was good.

They did blood cultures at midnight.  They will keep checking these for any signs of infection.  Bennett’s temp this morning is 102.0.

Hamilton was running a fever yesterday too, he started feeling better last night. 

*1:00 p.m.  Bennett’s temp is 103.8.  It’s never been this high. very concerning.  They just gave him tylenol.   He has a really bad headache. He received oxycodine to help relieve the pain. He is on two antibiotics: merapenom every 8 hours; next dose at 1:30 p.m.  and vancomycin every 12 hours; next dose at 5:00 p.m.   These are the same ones we had in March.  Vancomycin gives him red man (allergic re-action) so he will get this over 2 hours plus also take iv benadryl.

So far the blood cultures are negative.  His sunburn, skin irritation is the same as yesterday.  All of the nurses and doctors that have looked at it; have never seen anything like it on his legs.  It’s pretty bad.  It’s a possibility that it’s causing the fever.

*3:00 p.m. Bennett’s temp is down to 100.2. Amen!  He has felt so bad.  A concern is that Bennett’s WBC count went from 3.2 to 5.0 which jumped his ANC from 2,200 to 3,200.  It’s good that it’s not below 500 (nuetropenia) but it is a concern that it is rising.  A higher WBC sometimes indicates that there is an infection present.  The WBC increases to try to fight off infection.   We are praying the cultures continue to come back negative.   The 24 hour mark for the cultures is midnight.  They did a urine test because his urine was discolored.  He is on iv fluids.  Bennett right now is watching the Shriners Circus on t.v. that is being televised from downstairs.   No animals but some entertaining circus clowns/stunt artists.

*7:30 p.m.  Bennett’s temp has been running between 100.5 to 101.7 for the last four hours with tylenol.  The urine test came back negative!  Bennett is trying to sleep; he says his headache is better when he is sleeping.  He is so funny.  The meds he is on does make him tried so he has been asleep off and on for the last three hours.  We have a room mate so it is not as quite as Bennett likes.  He wants no lights on and the shades pulled so it is as dark as he can have it.

*10:30 p.m.  Bennett’s headache is better.  We just took his temp and it is 100.2. He ate 1/2 deli sandwich plus uncrustable peanut butter jelly for dinner.  He got out of bed and walked around in the hallway.  He visited with our friend Ethan down the hall.  Several of our 9W friends are inpatient. Please pray for Ryan, Ethan and Drew so they get out soon too.

The Dr.’s have stopped his daily chemo pills of 6mp.  Bennett has really started itching all over his body. It really is bothering him.  He doesn’t really have a rash or redness on his body but it really itches.  They gave him an anti-itch pill (atarx) but it didn’t really help. He is getting benadryl to hopefully make it go away.

 Thank you for your extra prayers and comments.