9:00 am We are coming home!!!! Amen! Bennett’s ANC is 560 from 240! Wow! Thank you God for answering all of our prayers. His hemoglobin is 10.2 from 10.1 and platelets are 92 from 90. Creatinine went up to 0.9 but still in normal range. His temp ranged from 98.4 to 97.9 through out the night. We are so happy to get home for a day or two. He has to come back to clinic at 8:30 am Monday and Wednesday morning to get the ampho drug.

*2:00 pm We bugged the Dr.’s and nurses to discharge us asap and I believe they made record time. Thank you! By 10:45 we were pulling up to Hamilton’s game, our team was up to bat and who was the first batter to bat that inning? Hamilton was up to bat! God has a way of letting us know he is control. I got to see Hamilton get a triple and score a run. We made it for 1 1/2 innings and our team won 10-3! No one thought it would be possible for us to make it to the game that started at 10 and we left at 9:15. And there was one parking space left, Bennett stayed in the car and could see partially the game from the car. Hamilton spent the night with Parker last night and when he woke up, he told his Mom that he had a dream last night that he saw me and Bennett at his game. Our “hambone” below.

*10:00 pm Bennett had a great day. He got a little tired but wasn’t ready to go home and it’s his first day of not staying in bed all day. We went to my Mom/Dad’s fishing, boating, 4 wheeling, shooting guns, and cooking out this afternoon/evening. Bennett was disappointed that he didn’t catch any fish this time but he had fun anyway! We both couldn’t believe how everything was so green and beautiful! The sunshine was gorgeous!

Thank you to all the Dr.’s, nurses, and 9west friends from SLCH. You guys are great and we love ya! Thanks to everyone’s extra prayers these last couple weeks. Thank you and praises to God for watching over Bennett. Whatever he had – God performed a miracle and took it away! Hugs to All!

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“Hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.” Romans 8:24-25

8:30 am Bennett’s temp at midnight and 4 am was 98.6.  His ANC is 240 from 210. WBC is 1.7 from 1.5 and neutrophils are the same at 14.  We were hoping for a higher ANC but sure thankful it didn’t go down even more.  Hemoglobin is 10.1 from 9.5 and platelets are 90 from 71.  Bennett is off isolation since his nose swab, urine and stool culture came back negative.  He has a new room mate. 

*2:00 pm Bennett’s temp at 9 was 99.1 and noon was 98.4.  He ate some breakfast around 10 and just ate a fish sandwich for lunch. He is feeling pretty good. He worked on some school work.  His classmates since Kindergarten are graduating tonight from 8th grade.  It’s a sad time for us to think,  Bennett would of been graduating with them. We still believe since this all has happened that it is best for Bennett to stay back and go to 8th grade next year.  He has missed so much school this year and it was hard enough to keep up with repetitive work. We are focusing on the good things and thankful his situation isn’t any worse.

I spoke to the nurse practitioner and they do want Bennett’s ANC to be closer to 500 before they discharge him.  His ANC didn’t work to our favor. When it was higher, he didn’t feel good and now that he feels better, it has gone down so hopefully in a day or two, his ANC will go up and he will feel good at the same time.   It’s possible though that it was elevated the whole time trying to fight off the infection he had.  Hopefully the antibiotic has killed the infection so his counts are what they truly are and now just need to recover.  Bennett is ready to come home which is a good sign.

*8:00 pm Bennett’s temp at 4:30 was 98.6.  His cousins Luke and Jenny came to see us and had a nice visit. We have to be careful because Bennett can’t be around a bunch of people with his ANC so low.  He ate a few bites for supper of a frozen pizza.  Tonight is another night of amphotericin. He is getting his bolus, benadryl, tylenol and demerol now. He’s already asleep for the night.    Everything went well with the ampho.

10:00 am Bennett’s temp at 8 was 99.3 and at 4 was 98.4. He didn’t hit 100 degrees yesterday so hopeful that is a good sign. His ANC really dropped today, it is 210 from 688. An ANC below 500 is neutropenia. A severe chance of getting an infection or difficult to fight it off. His WBC is 1.5 from 1.6 and the neutrophils are 14 from 43. Hemoglobin is 9.5 from 9.4 and platelets are 71 from 80. Unfortunately we are not going in the right direction with his counts. Bennett is still asleep. We expect to hear back on some of the tests today.

*1:00 pm Bennett’s temp at noon was 98.8. All tests so far have come back negative. Oncology and infectious disease Dr.’s are thinking that he has a different viral infection that is not one that they test for. Or a possible fungal infection that cannot be detected. Even one Dr’s said they need to come up with more viral tests. It’s possible that the viral infection is dropping his counts. They talked about us going home today until his ANC dropped in the danger zone. “When and If” he continues to feel good, no temp over 101.3, and ANC is over 500 than we will be able to come home.

It’s possible that the Dr. wants Bennett to continue on the amphotericin for a total of 14 doses. He is on his 9th dose. So if we do get to come home, he might continue with this drug every other day in the clinic.

Below is an update on the test results:

1. blood culture -negative, 2. Immunoglobulin level checked – IgG normal range is now at 1,221 after transfusion was 396, IgA low at 42.6 and IgM low at 14.3 (received IVIG infusion last week) 3. Echo cardiogram of his heart – normal 4. biospy of his leg – nothing yet 5. check antiobodies that fight off EBV virus – need to check 6. ultrasound of his line (they decided not to do this) 7. Ferritin blood test – was high at 2,700 – normal is 200. (this controls your iron and will be elevated if you have an infection – this confirmed that yes he did/does have an infection.) 8. Triglycerides blood test – normal

1. cryptococcus (fungus) – negative 2. mono tests – EBV and CMV – negative 3. PPD for tuberculosis – pending 4. Ehrlichia (tick related) – negative 5. urine culture – negative 6. nose viral culture – negative so far 7. stool culture – (virus, bacteria, C-diff) – negative 8. Tularemia (rabbits) – negative 9. Galactomannan (fungus) – pending 10. arbovirus blood test (west nile mosquito) – pending 11. Bartonella (cat scratch disease) – pending

This website has been my resource and notes to reference back too since his diagnosis. Even one of the resident Dr’s refers to this site to answer any questions she has about Bennett. Thank you for following his progress and your uplifting prayers.

*5:00 pm Bennett has had a good afternoon. Every week they have to de-access his port and re-access it with a new needle. When the nurse de-accessed him today, he took a shower for the first time in two weeks. He walked around 9th floor and went to the 8th floor garden. He thought rotisserie chicken sounded good so I went to Schnucks and he ate a chicken breast. He is working on some school work. Here is a pic of him at the garden. Since his ANC is so low, he has to wear a heavy duty mask when he is not in his room.

*10:00 pm Bennett’s temp at 8 was 99.5 and at 4:30 was 99.7. Apparently his body is trying to fight off something or his temp would be normal. We are so thankful that it isn’t any higher. It was so good to talk and laugh with Bennett this evening. It’s such a relief to see him smile. He hasn’t felt like it in several days. We watched CSI, Without a Trace, and the News tonight together.

Thank you for your continued prayers. We are praising God for seeing us through this and carrying us along the way. We pray that his counts begin to recover and whatever he had goes away for good.

11:00 am  Bennett’s temp at  8 was 99.3 at 4 – 98.6 and midnight – 100.0. His ANC is 688 from 576,  his WBC stayed the same at 1.6 and neutrophils are 43 from 36. Hemoglobin is 9.4 from 9.8 and platelets are 80 from 67.  Creatinine stayed the same at .07.

He is awake! He has ate some cereal and is watching T.V.  I think he seems to be a little better. We had a tough, stressful day yesterday so I am glad to see that it doesn’t have him too down.

*3:30 pm  temp at noon was 99.1.  Bennett has been awake a lot more today. He has watched T.V. , did some schoolwork and eating couple crackers.  He has problems with his stomach hurting and loose stool for 4 days.  His eyes look much brighter today.  We are hanging out waiting for test results.

*8:30 pm Bennet’s temp has been 99.5 since around 4.  He tried to eat a couple bites of jello and vanilla wafers.  Bennett worked on some more school work and stayed awake almost all afternoon.  He is going to sleep now because he is getting a bolus, tylenol, benadryl and demerol.  In about 30 minutes, they will start the amphotericin. He will get demerol 1/2 through it plus the will check his vitals every 15 minutes. We are praying he has no side effects with this drug and that it will knock out whatever he has. 

*11:15 pm The amphotericin is done and everything went good. He has been asleep and resting.  We are so thankful that Bennett is feeling better and hopefully will improve each day. This has been a long two weeks but it is all worth it if we can come home and Bennett is healthy!

10:30 am Bennett’s temp at 4 am was 100.4 and 8 am was 100.2.   We are still not sure what is causing the low grade temp but they have indicated that the amphotericin might be the cause.  I think it might be possible that the amphotericin is causing his tiredness/weakness but you wouldn’t think for days. It’s a pretty potent drug.  A low ANC can also cause this but normally he is not this lifeless.  The CMV viral test came back negative.

His ANC dropped to 576 from 800. WBC are 1.6 from 2.0 and neutrophils are 36 from 40.  Hemoglobin is 9.8 from 9.5 and platelets are 67 from 59. Creatinine is good at 0.7. He will not start back on his chemo treatment plan today because his ANC has to be 750 and platelets 75.

Bennett is up eating some cereal! He ate some and now is back laying down. We had decided that today was going to be a better day (God is going to provide). Bennett has to push himself to eat, drink, and get up more. He tried this yesterday but just didn’t feel like it.  It’s very important that he eats so he doesn’t have to go on TPN (total parenteral nutrition). The Dr. wrote for a physical trainer to come in and help him exercise.  Bennett and I both don’t want this to happen so we are going to make sure he eats and gets up more today. Bennett weighs 117, he weighed 125 two weeks ago.

*3:30 pm  The final bone marrow biospy and spinal tap came back as negative – no leukemia in the bone marrow or spine! Thank you God for answered prayers.

Bennett had his routine monthly pentamadine breathing treatment which prevents pneumonia today around 11:30.

The Dr. is concerned of the low grade fever, his ANC drop, and his tiredness/weakness. He does not believe it is from the amphotericin but not sure what it is causing it. The Dr. has requested more tests today:

1. blood culture, 2. Immunoglobin level checked, 3. Echo cardiogram of his heart, 4. biopsy of his leg of the rash/sunburn by dermatologist, 5. check antibodies that fight off EBV virus,  6. ultrasound of his line to his port, 7. Ferritin blood test and 8. Triglycerides blood test (will be elevated if he does have a viral infection) 

*4:15 pm  The infectious disease Dr.’s came to get a history of Bennett’s symptoms, home surroundings, and activities. They want to do more tests or repeat tests that could vary 2 days to 2 weeks for results:

1. cryptococcus (fungus), 2. mono tests (EBV -Epstein-Barr virus) and (CMV – cytomegalovirus), 3. PPD for tuberculosis (TB skin test) 4. Ehrlichia test (tick related) 5. urine culture 6. nose viral culture (adenovirus specifically besides flu) 7. stool culture (virus, bacteria, C Diff) 8. Tularemia blood test (rabbits) 9. Galactomannan (fungus), 10. arbovirus blood test (mosquito bite), 11. bartonella (cat scratch disease) 

Our pastor came to see Bennett/I today. The timing was difficult because we were in the middle of finding out that they want to run all these tests and have no answers. We appreciated him coming and praying with Bennett/I.  God is in control and will see Bennett through this.

Bennett had trouble walking today when he went for the echo heart test.  It seemed he had trouble keeping his balance. He said he wasn’t dizzy. He was to weak to walk back to the elevators so we got him a wheel chair. 

Bennett feels like he is being poked, examined, and run thru the ringer with all the Dr.’s and tests especially since he doesn’t feel good and just wants to sleep. 

*8:00 pm  Bennett’s temp is 100.4. At noon it was 99.3 and 4 pm it was 99.9. Bennett got up around 5:30 and ate some cereal. He is sitting up in a chair right now watching t.v. with me! It’s good to see him up!

They have put him on isolation now which means he cannot have a roommate, go outside of his room,  and the nurses, dr’s, hospital staff that come into the room have to wear gowns/gloves so if he does have something viral; it will not be passed on to another patient. 

*11:00 pm Bennett stayed up for about an hour and half tonight.  He had blood, urine, stool and TB test to complete tonight.  His legs are still looking better. We are putting the steroid cream on them each night.  The infectious disease Dr. came back and took a picture of his legs, she said they were have a meeting tomorrow and would be talking about Bennett as a group. Everyone is still trying to decide if the rash on his legs was a sunburn. It’s almost healed so it’s kinda hard to tell. The dermatologist took a biopsy of his leg but he really didn’t think they would find anything since it had been so long that it actually happened.

Thank you for everyone’s prayers, love and support.  It helps to read your comments on this site. I didn’t think our faith could get any stronger but we are relying on God to get us through.   

7:00 am Bennett’s temp at 4 was 100.0 and at midnight was 99.3. His WBC went up to 2.0 from 1.2. Neutrophils went down to 40 from 59. His ANC is 800 from 708.  Hemoglobin went up to 9.5 from 9.3 and platelets are 59 from 49.   Bennett did not eat anything for supper last night, his stomach was still bothering him. We will wait to hear from the Dr.’s on the plan/tests. 

*1:30 pm At first the Dr. wanted to send Bennett home today and see about home health giving him his antiobiotic amphotericin.  We were not comfortable with this since Bennett doesn’t feel good.  He hasn’t gotten up yet today.  He doesn’t feel like watching T.V. or nothing, he wants the room- dark and quite.  Our room mate did move to another room so Bennett is able to rest.

I spoke with his main oncology Dr. and she wants him to stay at least a day or two until he starts feeling better. She knows him and knows this isn’t Bennett.  We have no “official” diagnosis of what is even wrong.  They took him off the meropenum which is a bacteria antibiotic since no signs of bacteria infection.  His last dose was at noon.  I think it’s a good idea to watch him without this med and see how he does too.  He is going to continue to get the amphotericin drug every other day. He is scheduled to get it tonight around 6.   this drug makes me nervous – so many side effects plus he has to get so many meds before hand to keep from having an allergic re-action plus the shakes.

 His temp is still low grade at 8 am – 100.2 and noon was 100.0.  They are not concern with the low grade temp since he is on the ampho that seems to keep it down.  Plus since it’s low and hasn’t been high in a couple days. I would prefer his temp to be normal and won’t be satisfied until it is. 

We are still waiting for the final bone marrow test but she felt confident with the preliminary results of no leukemia present! Amen!

His Dr. wants to start him back on his chemo treatment plan since it’s been 1 1/2 weeks. She wants to watch him in the hospital too and make sure he does okay with it. She thinks he will be fine since his temp is low grade and his ANC is 800.

I’m not feeling real confident about all of this;  so I pray that God will give the Dr.’s wisdom and give Bennett strength to fight off the unknown.

*5:00 pm Bennett got up around 3 and ate some cereal. He didn’t really feel up to it but he walked around the 9th floor twice. He also sat up in a chair and was timing 15 minutes and was ready to get back in bed and he went back to sleep. His temp at 4 was 99.7.  They will not start him back on his chemo treatment plan today because his platelets have to be at 75, his are 59. We had good news, our friend Ryan is out of ICU and back on 9west! God is Good!   

Hamilton has a baseball game tonight; wishing we could be there. I felt sorry for Hamilton yesterday when he was here because Bennett didn’t even feel like talking to him. Please say a prayer for Hamilton too, I know this has to be hard on him. Ham’s having to grow up fast too. 

*10:00 pm Bennett has been asleep since about 3:45. He opens his eyes for a minute when the nurse is getting his vitals. About 5:30, he got a bolus, benadryl, tylenol, and demerol to be pre medicated for the amphotericin. And he received more demerol half way through.  He did it okay with it tonight. It just really drains him. His temp has been between 99.3 and 99.9 for the last several hours.

We are praying that he wakes up tomorrow feeling good! 

10:30 am  Bennett’s temp is 99.0 and has been since midnight.  His ANC is 708 from 726. WBC are 1.2 from 1.1 and neutrophils are 59 from 64. His hemoglobin is 9.3 from 9.4 and platelets are 49 from 47.  Creatinine is .07 which is good, this controls his kidney’s and is watched because of the antibiotics.  His counts are staying about the same, we pray they will increase each day.

They have changed the amphotericin to every other day so he will not get it today. His is still getting the meropenum at noon and midnight.

All of my boys are here celebrating Mother’s Day with me.  The best Mother’s Day present I could have is Bennett being well and my boys living life with me until I am too old to go on. 

*2:30 pm Bennett doesn’t feel good. His stomach is really bothering him. His temp was normal at 98.6 at noon.  He woke up earlier ate some cereal and pbj sandwich. He hasn’t really visited today with anyone.  He is sleeping/resting and is not in a very good mood.  We have had a tough day, our friend Ryan has been transferred to ICU. Please pray for Bennett and Ryan plus all the kids on 9west. 

The Dr. is talking about Bennett being discharged in a day or two.  If he doesn’t spike another temp and tests come back negative.  The Dr. wants to talk to his main oncology Dr. and see if she agrees with outpatient treatment.

*9:30 pm Bennett’s temp is 99.9. It has been 99.3 since around 4.  He has had lower back pain (probably from the spinal tap) this afternoon and took some pain medicine .  He was feeling better early evening and walked a couple laps around the 9th floor and did some school work.

The Dr.’s are assuming Bennett has some type of fungal infection. They are not positive because nothing has showed up on any culture or test.  They do believe that his body is responding (fever lowering) to the amphotericin (anti-fungal drug) so that is what is leading them to believe it is fungal infection. I questioned the consistent low grade temp, the Dr. indicated you can run a low grade temp for several weeks if he has fungal infection.  It’s possible he can be outpatient and take this ampho drug in the clinic.

We are praying Bennett’s counts increase, his temp is normal, no stomach or back pain, negative tests/cultures, and he stays in remission forever!

“As a mother comforts her child, so will I comfort you.” Isaiah 66:13

Happy Mother’s Day Mom J.

and Mom P!

And to all!

May God bless all the Mothers
That give of themselves
And tend to their household needs
Before the needs of ‘self’
For they are there with comfort
For each child’s broken heart
Bringing them to God in prayer
With His love to impart.

© By M.S.Lowndes

10:00 am  Bennett’s temp is normal – 98.6!  At 4 am it was 99.3.  He is still sleeping. His WBC is 1.1 from 1.2 and neutrophils are 64 from 44 with an ANC of 726 from 528!  Hemoglobin is 9.4 from 9.1 and platelets are 47 from 45.  Almost everything went up!    His creatinine level was normal at .08 which they are keeping a close eye on this because the amphotericin can hurt your kidney’s.

Hamilton is in the Rend Lake Parade today for being one of the top five students to know their states. I’m so proud of you Ham and miss you!

*3:00 pm Bennett woke up around 12:30, ate some cereal.  His temp is 98.1, it was 99.1 at noon.  His friend Brittani is in the hospital and came by to see him, please pray that her lung infection goes away.  He got the antiobiotic meropenum around 1:00.  He will get another dose of amphotericin around 6:00, praying for no shakes or side effects.

*9:00 pm  Bennett ate a couple cheese sticks for supper. The amphotericin is completed. Bennett was pre-medicated with tylenol, benadryl, and demerol at 5.  He also got demerol 1/2 way in between and he did not get the shakes this time.  He is extremely tired, all this medicine has made him sleepy.  He temp went down to 97.7 while they were checking vitals every 15 minutes for the last 2 hours. At 8:30 his temp was 100.0 but it might be up because another side effect of the ampho is a fever. 

Bennett was feeling fair today.  He didn’t want to get up or really do anything but lay in bed this afternoon. The Dr. thought his color looked a lot better today.  

“And remember that God has promised that if you will put your trust in him to bring about the justice in your life, he will pay you back for all the unfair things that have happened to you.” Isaiah 61:7-9  

8:00 am Bennett didn’t have a very good night. He couldn’t sleep, he had a lot of benadryl that should of knocked him out. Unfortunately our 2 year old roommate cries a lot keeping him from sleeping.  His temp at 4 am was 100.2.

His WBC went down to 1.2 from 1.9.  Neutrophils are 44 from 74 causing an ANC of 528.  His ANC yesterday was 1,406, a huge drop.  Hemoglobin is 9.1 with the transfusion yesterday. Platelets are 45.  The last viral test came back negative.

The MRI results showed in his sinus area that he has a mastoid effusion. This is normally seen when someone has an ear infection.  He also had a mucous cyst in the spheroid sinus. These could cause fever but they are not really sure.  Dr. said this is unusual to have with him not having any other symptoms but nothing to be too concerned with so they are unsure if this is the cause.  

*1:30 pm Bennett’s temp is 100.9. He finally is awake. He ate some cereal and is watching t.v. His back is still bothering him from the procedure; taking oxycodone.  The Dr. has taken him off one of the antiobitics vancomycin because she doesn’t think he has a bacteria infection. This med supressess your counts too. He still is on the merophenum every 12 hours and caspofungin once a day. They took blood for one more viral test called CMV, it will take 1 to 3 days for results.  We just found out that it will be Monday before hearing the “official final” results of the bone marrow of looking for leukemia.

*7:30 pm Bennett has been feeling better. We have been watching T.V.  and napping together.  He ate 1/2 turkey sandwich for dinner from the Bread Co.  His temp is 99.3 and was 101.5 this afternoon. 

  The Dr. is switching the caspofungin to the amphotericin (anti-fungal med) tonight because he thought his fever was better after he had that dose on Wed.  He may have a fungal infection that is hiding and cannot be detected which is very common.   The nickname of this med is ampho-terrible because of all the side effects.  He is getting a bolus to help flush out his kidneys so maybe his creatinine level will not jump and than they will start in about an hour.  It will take about 2 hours for the med.  They will check his vitals signs every 15 to 30 minutes.  We are praying that he will not get the shakes (rigors) or have any side effects. They have pre-medicated him with tylenol, benadryl, and demerol.

Bennett was in the hallway earlier waving to his friend Ryan in his room, unfortunately they can’t visit with one another because of their symptoms.  I took a pic of Bennett weighing himself while he was hanging out in the hallway.

*11:00 pm  The amphotericin is completed.  Bennett ended up getting the shakes again even with demerol before hand. He had to have more demerol and the shakes went away.  This is difficult to watch as he shakes uncontrolably. He said he feels like he is having a seizure.  His temp is 99.7.

We appreciate everyone’s prayers.  We feel the love and support. It is getting us through each day.  Thank you!