*2:30 p.m. We are all snuggled in to our home away from home. Bennett was thankful to get the same room we had before which gives him a DVD player so we can watch CSI together! Hope he is up to it.

His ANC dropped to 837 from 1,776 on Monday. His WBC is 2.7 from 4.8 and neutrophils are 31 from 37. Dr. is not concerned of the drop in his ANC. She believes it’s rebounding from the infection/fever he had last week, stopping neuopogen plus he has been on his chemo pills for 5 days. His hemoglobin was 11.7 from 12.3 and platelets 228 from 210 which is all good. All other metabolic panel blood tests were good too.

His oncology Dr. has decided not to get neurology involved at this time because after examining him he does not show the signs of having these symptoms. She was looking for eye and ear problems and balance walking or standing, all was good. She does want him admitted and observe him for 48 hours. She wants to observe his activity and what may cause his headache to come on or be worse. He doesn’t have it all the time, sometimes his pain is 0 and other times it is a 6, 8, or 10. We feel the activity doesn’t matter. The headache was horribly worse after he went to school but he has other days that he has been in bed all day and night and the headache still comes and goes.

Dr. does want the pain management Dr. to examine him again and see if there is any other suggestions and to revisit the possibility of a spinal tap headache. Oncology Dr. does not think he has the symptoms of a spinal tap headache though. I am of the opinion if there is any possibility that it is and it’s safe to do the blood patch to cure a spinal tap headache, than let’s do it and rule this type of headache out. We will see.

Dr. changed his continuous pain medicine to methadone from the oxycontin for every 12 hours still. She didn’t want him on that for very long; it is easier to tamper off on the methadone. He still can get the oxycodine every 4 hours if needed.

I questioned the oncology Dr. if she thought about doing a bone marrow biopsy to rule out the relapsing of his leukemia. She does not believe for any reason at this time that this is the problem. I was worried about the fatigue because this is one of the main symptoms he had before diagnosed. She indicated if his bone marrow was diseased that his hemoglobin and platelets would not be going up and staying in a good range. I do understand that so I questioned how long does leukemia have to be in your bone marrow before it completely attacks your hemoglobin and platelets and enter into your blood. She said it is pretty quick probably a couple weeks. And Bennett has been sick for about a month. So far now, this is all great news! My mind will never be rested/satisfied but the Dr.’s reassurance was badly needed. We will always continue praying this prayer.

Bennett was good about answering all of the Dr.’s and nurses questions, it was good to hear him talk that much. His headache pain has been an 8. He ate some muffins for breakfast and pizza for lunch. He is really tired and is trying to take a nap.

Bennett is about the same today. His head has still been bothering him with pain off and on. It’s not constant and when he takes the additional pain med it does help.

When I brought him home his lunch, he indicated that he was too tired to eat it, it was too much work. It wore him out just to eat a few bites of a corn dog and he had to go back and lay down in bed.

I thought a shower might make him feel better but he didn’t have enough energy for that so we decided for him to take a bath, he was exhausted after wards.

He colored a social studies map today and he indicated that wore him out too. He took some friends out to show them the puppies but again after wards he was worn out. Below are a few pics that Hamilton took of his proud babies!

I spoke to his oncology nurse today and she spoke to the Dr. I feel like his energy level has gotten worse since we have been home and he still has the headaches. His Dr. wants to admit him to the hospital tomorrow. It’s possible she is going ask the neurology Dr. to see him. If we did this out patient it would take several weeks for an appt but if he is inpatient they have to come and see him right away.

The ENT Dr.’s recommended this last week but oncology didn’t think was the best choice at that time. I’m kinda dreading having another team of doctors because we lose communication when there is so many involved in his care. But we can’t continue like this for many more days and weeks. This part is out of our control. We ask God to guide the Dr.’s to relieve his symptoms and keeping him in remission forever.

[caption id="attachment_2278" align="alignnone" width="300" caption="Hamilton\'s dog Izzy and her puppies"][/caption]

Bennett thought he felt a little better than yesterday but still didn’t feel very good. He did decide that he would try to go school after lunch. He didn’t really feel like it but thought he needed to try. He was there for about 2 1/2 hours. When he got home, he felt miserable. His head and stomach was bothering him more. He got sick to his stomach. He took an additional pain pill when he got home. He still has a headache tonight of an 8 so I gave him another dose of pain meds. He still is taking oxycontin twice a day. And takes oxycodine in addition if needed.

He only ate a corn dog and a few bites of sloppy joe all day. I hated he missed the highschool orientation last night. I went and attended the parents sessions but missed him going and learning about what next year is going to be like for him.

He took his weekly 12 methotrexate pills, he had missed taking these the last two weeks. Since his ANC was high enough on Monday, the Dr. wanted him to go ahead with them and his daily 6mp pills. I thought it was a little soon since he was feeling so bad but Dr. didn’t want him going any longer without taking his chemo pills.

I talked to his ENT Dr. that actually did the sinus surgery! (I was impressed) We only talked to her a few minutes after surgery and I hadn’t seen her since. She indicated that when she did the sinus surgery there was no sign of infection, no puss. The scans showed his sinuses were alot worse than what they were she thinks. When she was doing the surgery, she said they were remarkably clean, she called it an unrewarding surgery. It was really healthy, very pick and no yellow. She said she had no reason to do a culture because there was no puss to culture. She did say his mucus was thick and sinus lining was very thick so the surgery was needed. Plus the CT scans findings indicated it was needed as well but the scans were showing the inflammation alot worse than what it actually was.

She cleaned his big sinuses (2 cheeks and 2 nose) and saw that he was getting air through the sinuses so she felt like she didn’t need to go any further to the more dangerous sinuses near his brain.

She feels like because of her findings that his headaches are not caused from the sinusitis. She indicated that his prolonged cough could of been from the thickening of the lining but she was not sure. She said a cough can be caused by several other things too. But he doesn’t have his cough anymore!

She said it will take months for the lining to thin out. “Time” is the only cure. That as more air travels through the sinuses and by using nasal sprays this will help break down the thickening.

I asked her about the MRI that Bennett had in May 2007, I recalled something being found in his sinus. “My text book website” reminded me that he had a mucus cyst in his sphenoid sinus and he had a mastoid effusion. The ENT Dr. recently looked at those MRI results and she indicated several people have a cyst and it’s not a problem as long as no blocking. The mastoid effusion is with the ear and might be fluid on the ear. She confirmed and agreed with what the Dr.’s told us last May; to not to be concerned about these two findings and these would not cause a high fever.

I questioned the antibiotic augmentin that he was prescribed to him for the next six days. The oncology Dr. said he needed this antibiotic for several weeks so I was confused. ENT Dr. said this was a preventive treatment to prevent infection because of burgering up his nose from the surgery.

But he had a fever in the hospital so his oncology Dr. may think it’s needed for the infection that was causing the fever. This is a guess until I hear back from my call yesterday.

What does this all mean? I think it means that ENT Dr. felt like his sinusitis wasn’t as bad as the CT scan showed but it was needed. She believes it is not the cause of his symptoms today.

But has the ENT Dr. done very many sinusitis surgeries on a leukemia patients? Do we really know that his symptoms are not from the thickening of his lining in his sinuses?

She looked at his last scan on Friday and knew there wasn’t going to be a change in the inflammation shown; that it was too soon. She did confirm that they did want the vascular CT scan to see if the inflammation had spread to his brain and it showed negative.

I feel better after talking to her because I understand a little more but at the same time I feel worse because we are back to not knowing why he is sick.

May God bless Bennett and heal him of his pain. May he give us patience and hope to keep our faith strong. May God help us understand all of this and gives us answers to this mystery while keeping Bennett in remission forever!

Bennett’s ANC was 1,776 from 1,742! Wow! We are so grateful and pleasantly surprised! His WBC was 4.8 from 6.7 and neutrophils were 37 from 26 from his last CBC 2 days ago. We pray that this holds and these high counts are not just from the neupogen medicine. We will check counts again on Monday before his monthly chemo appt on Tuesday.

Bennett does not feel well. He did not go to school. His headache has bothered him some but his biggest complaint is no energy and just feels awful. He never really got up today, he stayed in bed all day. He didn’t play any video games or anything extra.

I brought him home a blizzard tonight and he came in the kitchen and sat at the kitchen table for a few minutes, it wore him out and he had to go back to bed.

His back is bothering him too, he said it feels like someone is taking a knife and stabbing on both sides of his spine? I offered for him to go to the massage therapist today but he didn’t even feel up to that. He did let me rub it but didn’t help the pain go away. Hopefully tomorrow he will feel up to that.

I called the ENT clinic today to schedule a follow up appt, I was telling the ENT nurse of his issues, and asking if we cannot culture his sinuses and figure out what type of infection is to make sure he is on the right antibiotics. The ENT Dr. was in surgery and they are supposed to get back with me.

I spoke with his oncology nurse today as well. And was told that it’s just going to take awhile that his body has been through a lot. I am not coping well with this answer.

He did get up late tonight and took a shower which he hadn’t done since we had been home because of not feeling up to it.

I’m worried that Bennett still does not feel good. We are going on about 3 1/2 weeks of him being in bed more than he is out. This can be depressing and upsetting and I pray that he can stay strong through all of this, physically and mentally. We thank God for giving him such a fighting spirit!

Bennett doesn’t feel good. His head is really bothering him. He slept until about 1:00 p.m.. He has been in bed all day. He got up to eat lunch and work on some homework. He has a lot to do and I think he became more frustrated and depressed with all that he has to do. This is the first time that he has felt like working on it. Later in the afternoon, he had a lot of pain in his head. He took an extra pain pill and went back to bed. It didn’t really help, he says his pain is an 8. Right now he doesn’t feel like going to school.

He says he feels lousy, he feels tired and just doesn’t feel good. I hope this isn’t from his ANC dropping too low. We will go to our local hospital in the morning to have them checked. If his counts are to low than he won’t be able to go school. I know he really wishes he felt good enough to go. He also feels nauseated this evening.

It’s been such a beautiful day, and it is frustrating that Bennett isn’t able to enjoy it. I know when he isn’t outside, he must feel bad.

May God hear our prayers and heal Bennett of this sinusitis and headache pain. We pray his ANC is in a safe range.

“Moreover let us exult and triumph in our troubles and rejoice in our sufferings, knowing that pressure and affliction and hardship produce patient and unswerving endurance.”
Romans 5:3

*9:00 a.m. Bennett’s ANC is 1,742 from, 2,244. His WBC were 6.7 from 6.6 and neutrophils were 26 from 34. We hope he can hold unto these and his bone marrow starts making them on their own without the neupogen. His hemoglobin is 9.7 from 10.1 and platelets are 159 from 151. His temp through out the night and this morning is 97.5! the lowest it has been and the closest to his normal temperature! So far his head feels pretty good. He is already up eating pancakes and waiting to hear from the Dr.’s if we get to come home.

*10:15 a.m. Bennett has been discharged! We are waiting for discharge papers and we’ll be ready to blow this joint!

*5:00 p.m. We got home around 1:00, Home Sweet HOME! It’s so beautiful outside, Bennett and I couldn’t believe how green the grass was and how pretty the trees and sky looked! We are so thankful to be home after 11 days in a hospital room.

Bennett feels pretty good. His back has been bothering him this afternoon, he said it hurts to be bend over; that might be from being in bed for almost two weeks.

Dr. prescribed him two antibiotics: augmentin and fluconazole to take for a week twice a day. This is to help with the infection in his sinuses. He has pain medications to take around the clock and another one if it is needed too.

We assume she will see how he is at our next visit in 10 days and possibly prescribe another dose since she indicated she wanted him on antibiotics for at least 3 weeks.

The Dr. wants him to start back on his chemo 6mp pills beginning tonight. I hope the chemo pills along with sinus infection doesn’t drop his ANC too much. We are going to have his counts checked locally Monday morning.

Thank you for everyone’s prayers, support, and comments. We are so thankful and grateful to God! Each trial doesn’t get any easier and unfortunately we fear the worse each time he is sick. We are praising God for keeping Bennett in remission!

*9:30 a.m. Bennett’s ANC is 2,244 from 984! He has 6.6 WBC from 4.1 and 34 neutrophils from 24. The neupogen is working! Hopefully his body will hold unto these and his bone marrow will make a bunch more. His hemoglobin is great at 10.1 from 9.8 and platelets are 151 from 138! His temp late last night was 99.1 and it is 98.4 this morning. He hasn’t woke up yet this morning so not sure how he feels yet.

*12:00 p.m. Bennett had a head/neck vascular CT scan at 11:00. They used contrast dye this helps to see images of his blood vessels, arteries, veins, and bones. We pray that we receive good results and nothing serious. We woke him up for this so he is now eating his breakfast of pancakes and cereal.

Dr.’s have decided to stop the antibiotic vancomycin since he hasn’t had a fever for 48 hours. They will continue the other two: meropenum and fluconazole. Dr.’s have decided to stop the iv caffeine too. Also, they want to stop the iv neuopogen to see what his ANC will do on it’s own. So far this morning, his headache is about a 3!

*6:00 p.m. The CT scan showed the same results as before, the same as the last one they took 11 days ago. There must of been confusion about the scan because his oncology Dr. said it was not a vascular scan to view blood vessels, arteries, etc. It was took look at his sinuses again? This is frustrating. She indicated the scan showed thickening and lining in his maxillary sinuses and the sinuses above his eyes. They thought it still would show inflammation and they just wanted to see if it had gotten worse. Dr. is expecting the continuous antibiotics will thin and drain this out. Once a day, since surgery, he has coughed up mucus which is good news, means it is draining instead of staying blocked. I still think if nothing else is wrong, this has to be the problem causing the headache.

His head pain was better today but about an hour ago, it was worse and he rated it an 8 so they gave him oxycodine. He hadn’t had any all day. This is the one he can take every 4 hours. He did have the oxycontin at 8:00 a.m. and takes every 12 hours.

Great news! He will be discharged tomorrow IF he doesn’t have a fever and/or his ANC doesn’t drop 500 or below in the morning. Please pray this all works out and more importantly that it stays that way at home over the weekend. Dr will send him home on oral pain medicine and antibiotics. She thought it may take several weeks for him to feel good and possibly months before the sinusitis is gone. (this is not very encouraging).

*9:30 a.m. Bennett’s ANC is 984! WBC is 4.1 from 2.0 and 24 neutrophils from 11! We are thankful it has gone up and hopefully will continue to rise each day. His hemoglobin is 9.8 from 8.9, awesome! And platelets are 138 from 123. These is good news, that is bone marrow is making cells and the fever/infection is not killing them.

His temp has been 99.1 late last night and 98.4 this morning! We hope this continues too. It’s hard to get too excited because his temp was normal a few days ago but came back up. We will just pray that it continues to stay normal and that his ANC will continue to rise. Both of these things will help him feel better too.

He woke up this morning around 8:30 and is having trouble going back to sleep. His pain when he woke up was about 6 1/2, he said he felt better when he firsts wakes up. But the pain now, he says is a 9. He was given the oxy every 4 hours throughout the night. Next dose is at 9:45 am.

12:00 p.m. Bennett woke up again around 11:00 and ate his daily ritual of pancakes and cereal. His temp is 99.3. Shoot, was hoping it would stay normal or even below. His temp usually is around 97 at home. The Dr.’s have increased his pain pills. He is now taking oxycontin every 12 hours. And he still can get the oxycodine every 4 hours. They reduced the oxycodine to 5 mg from 10 mg since he will be getting the oxycontin as well. They took him off the iv pain drip because dilaudid can cause headaches. It’s rare for this to happen but it can.

Dr.’s don’t really know what is causing the headache, still possible the spinal tap headache or from the sinusitis. To treat a spinal headache, they would normally do a blood patch, taking the blood from the patient and putting it into the spine to stop the leakage causing the spinal headache. But they cannot do this with Bennett, they do not want to give him his own blood in his spine because he is running a low grade fever (signs of infection) and his ANC is too low. And normally a spinal headache would be gone after 9 days for other patients because they do a blood patch and it’s gone. So no history to really to compare too for Bennett.

I am thinking it may just take time for Bennett’s low grade fever go away, for the antibiotics to work. He has a record of when his ANC drops severely low that it takes weeks to re-build. And I think he had so much puss and mucus in his sinuses that it is taking awhile for the inflamation to go down therefore relieving him of the headache. We pray and hope that this is all it is. We are so thankful to hear from the Ct scans last week that no tumor or anything else is going on. This gives us strength to keep dealing with this; it could be worse.

He is still getting colace, senna, and myrlax twice a day for constipation. Pepcid for heartburn. And still getting caffeine once a day at 500 mg. Three antiobiotics: meropenum & vancomycin every 8 hours with benedryl, and fluconazole every 12 hrs, and saline nasal spray. Plus will get iv neupogen again tonight to help increase his ANC.

*6:30 p.m. Bennett’s temp 99.5 all afternoon. He has been itching even more today and has asked for attaraks and nu ban to help with that. It’s made him quite irritable and is aggravated easy. His headache pain was better, down to a 6. It got worse after he washed his hair. Recently his headache pain is about a 7 on the left side of his head. He is eating good, had pizza again for dinner. We wished we were home, Hamilton has a practice game tonight that we are missing and Bennett’s westie Katie had 5 puppies today!

*9:30 p.m. Bennett temp is now 99.1. I wish he would just break this low grade. His head on the top and left/right sides were bothering him worse. He said about an 8. He is talking about things that he misses at home so I know he is wishing he would be better so he could go.

Please say an extra prayer for all the children here in the hospital. It’s pretty sad and frustrating that these sweet innocent kids are suffering. We don’t even really know many families here now. There has been about 15 new diagnosis this month. How ridiculous! Some are told there is nothing else the Dr.’s can do for their child, how devasting. We see several patients in clinic that we have met that are still in treatment. Please pray for them too. All of these children are special hero’s. We pray that our heavenly father will lay his hand on them and cure them of their disease.

*9:15 a.m. Bennett’s ANC is 220 from 540. This bothers me some that it is so low with the neuopogen. Last time he had neuopogen, it jumped up to the thousands pretty quick. He is going to get neuopogren again tonight. His WBC were still 2.00 with 11 neutrophils instead of 27. Hemoglobin went up to 8.9 from 8.4 and platelets are 123 from 114. This is good, at least his bone marrow is making these cells. We pray that it makes white blood cells soon.

Bennett had a fever at midnight of 101.3. They took blood cultures again and gave him tylenol. I’m concerned of what is causing the fever. The antibiotics so far isn’t killing the bug that’s causing it. He needs a higher ANC too to help fight it off.

Bennett slept pretty good last night. His pain late in the night was an 8. He complained of a throbbing pain on his left side of his head. His side was bothering him but hoping that was from sitting up in bed. Dr.’s are going to lower the pain med drip a little more today. It was 220 micrograms an hour and they changed it to 200 yesterday and today to 180. He still can use his button if needed.

*2:15 p.m. Bennett woke up around 11:00 a.m. He ate pancakes and cereal again. He really likes it. He took a sponge bath in bed and washed his hair. He had some chest pain while up blow drying his hair. He couldn’t lay back down fast enough.

He got the 500 mg of caffeine by iv at noon. So far he hasn’t given him that spunk (energy) that he has had the last few days after the caffeine.

Oncology Dr. does believe he has some type of infection because of the fever and the low ANC. Possibly from the drainage of the sinuses. They did a blood test for galactomannan which is a type of fungas. If it comes back positive, they will switch his antiobiotic.

Bennett is in pretty good spirits. He’s not ready to go home until he is feeling better. He is content putting together lego right now.

*6:30 p.m. Bennett’s temp was 100.0 at 4:30. He has started itching again so they gave him ataraks. He had personal pan pizza for dinner. His pain in his head is a 7 1/2. Dr.’s have decided to take him off the dilaudid pain drip because dilaudid can cause headaches? They are switching him to 10 mg oxycodine pain pills every four hours. We are going to try this and see if he can tolerate the pain and hopefully will relieve it if it’s a dilaudid headache. Dr. discussed the blood patch again if it is a spinal tap headache involved too but they are not comfortable with doing this because of his low anc and fever.

*9:30 p.m. Bennett had a cookie dough blizzard tonight for a snack. I think he has had one the last several days, he really likes them. He feels pretty spoiled, he loves his egg crate on his bed. He got a fan today and loves it to sleep with a fan at home. The little things like this really helps.

His temp at 8:30 was 99.1. We pray it doesn’t spike up anymore. His pain is around 8 right now. His head hurts all the time. His left side hurts when he stands up, not sure what this new pain is. His oxy is due again at 9:45 p.m. and he is ready for it. We pray he can continue with the oral pill and not have to go back on the drip.

We pray for a higher anc, no fevers, and his pain to go away. May God bless you all, our family and friends as we continue this journey together. Thanks for checking in, your comments, prayers, love, and support.

*9:00 a.m. Whew! what a night, Bennett did not go to sleep until after 4am. We think it was from the iv caffeine, he didn’t get it until 6:00 p.m. He was wired afterwards and said he felt like he had a buzz. He got two doses of ativan last night and finally was able to go to sleep.

His ANC is 540 from 697. Not the right direction especially with getting neuopegen. His WBC were 2.0 from 1.7 and neutrophils were 27 from 41. His hemoglobin went up to 8.4 from 7.9 and platelets at 114 from 107.

His temp at 9:00 p.m. was 100.6 and has been low grade around 99.5. This is bothersome to me because his temp normally runs 97. The Dr’s don’t treat a low grade until it reaches 101.

I want to talk to the oncology and ENT Dr.’s more specifically today about his head pain. I’m just surprised if the headache is from the spinal tap that it should be gone since it’s been a week since he had it. And if the head pain is from the sinus surgery, the ENT Dr said yesterday that should be gone so what is it? ENT Dr. is supposed to come back in this afternoon when he is awake to find out exactly where it hurts. I’m wondering if it’s not the other sinuses in his head. We have to trust the Dr.’s and take this all one day at a time.

*2:30 p.m. Bennett woke up around 10:30 a.m.; early for not getting much sleep. He had couple pancakes and cereal. He had a personal pizza around 1:00 so he eating much better.
Dr. has increased his senna and myrlax to twice a day for constipation plus he is getting colace. They gave him more caffeine 500 mg at noon so hopefully this will not interrupt his sleep tonight.

His pain is a 7, it hurts on both sides of his head. The oncology, ENT and pain management Dr.’s are discussing of what to do next.

He was de-accessed from the needle going into the port which is how he receives all of his iv medicines. He can only be accessed by the same needle for a week. He was able to sit on the side of the shower and wash his hair/body. They re-accessed his port and now he is back on his iv fluids and pain med. They gave him a bolus of pain med so he wasn’t in any pain while taking a shower. He has been playing with lego, he . wants something to do and not have to concentrate too much especially since the pain med relaxes him.

*9:00 p.m. Bennett’s temp all day has been 100.2. Dr. has started him on another antibiotic called fluconazole (diflucan). This is for fungal infection. They don’t think he has it and all blood cultures have came back negative. They want to give it to him though because he has been on the other two antibiotic meropenum and vancomycin and still having a low grade fever off and on. They want to cover all their bases.

Oncology Dr. discussed with the other Dr.’s about if a blood patch would help the spinal tap headache. They decided it wouldn’t help with his headache symptoms. ENT Dr. doesn’t think the headache is due to sinuses because of the location of the pain in his head being on the side above the ear. They also indicated that doing another CT scan wouldn’t show anything that it will take awhile for the inflammation to go away.

He received another dose of neuopogen tonight, hopefully this will increase his ANC and it will stay at a safe range. I’m a little leary that it will continue and not decrease quite a bit after the neuopogen is stopped. Dr. says depending on his ANC level tomorrow, she may continue to discontinue, it’s a daily decision.

Dr.’s decreased his pain medicine drip just a little since his pain is a 7. He can still push just as much if needed. Hopefully his pain will not get any worse and we can keep gradually lowering it. He can’t be on the pain drip at home and needs to be weaned off gradually. We don’t have a time frame to come home but know this needs to happen gradually. His temp needs to be normal and his ANC needs to be in a safe range.
His oncology Dr. wants to start his chemo medicines back asap.

God bless you all that have reached out to us. Thank for your comments, prayers, and support.