Happy Halloween!

 8:30 a.m.  Bennett’s in the hospital. His temp last night went away around 7 but returned 2 hours later at 100.8. I kept checking it every 30 minutes and at 10:30, it was 100.9 and 10:45 at 101.5.  He also developed a cough in the evening.   I called the Dr. on call and we came to the emergency room at SLCH arriving at 12:30.    They did a chest xray – checking for pneumonia and none present, blood cultures – will take 24 hours to see if anything grows, and a swab of his nose – checking for viruses.   We were moved to the 10th floor at 3:oo a.m.  We were disappointed that we can’t be on the 9th, we were hoping to see the nurses and patients.  Since he came in with a bug, they don’t want him on the floor with other neutropenia patients.  His temp this morning had been around 101, they gave him tylenol at 7:00 a.m. and his temp has gone down to 100.2 

They also did a blood test and his ANC dropped from 153 to 140. His hemoglobin is still ok dropping to 9.6 from 10.5. They started him on an antibiotic that he will get by iv every 8 hours to help fight any infection if it’s there. 

He is doing ok, he is just so tired from the long night and just wants to sleep.  His stuffy nose/head and cough is bothering him.  The concern is that Bennett doesn’t have many white blood cells to fight off infection and can get pretty serious if it’s not treated. Some neutropenia patients get an infection from their own body. He’s in the right place to get over this and thankful that his temp wasn’t any higher.

4:30 p.m.  Bennett’s temp went away around noon and just returned at 100.8 so they gave him more tylenol.  He has had a bowl of cereal to eat so far today.  Dr. say it will take 48 hours to get a final reading of the cultures and nose swabs so not as soon as I had thought.  He has slept all day except in-between nurse check-ups, housekeeping, etc.  His throat is getting a little scratchy. 

10:00 p.m.  Bennett’s temp is good. He ate 1/4 turkey sandwich with a couple bites of chocolate pudding for supper. He was hungry tonight and thought a stuffed crust pizza sounded good. He ate 1 1/2 pieces of just the stuffed crust and it didn’t stay down.  I was just thinking earlier how thankful I was that he wasn’t nausea, thought too soon.

The deal with the cultures are that they will check them at 24 hours and than the final check will be at 48 hours, there is the difference in the times that I was getting.

He received an antibiotic cefepime through iv at 9:00 p.m. so next dose will be at 5 a.m.  He has been getting iv fluids.

Thank you for everyone’s love, support and prayers!

“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19

Bennett’s appt went good this morning. We had to wait about 2 hours to just begin the blood test so we didn’t leave the clinic until about 12:30. He also received an iv push of vincristine.

We had some good and bad news with his counts. Good news is that his hemoglobin and platelets were ok but his ANC went from 480 to 153. He has a severe chance of getting an infection! Go away Germs!

He finished the 4th phase today! His next phase starts Tuesday if his ANC is at 750. The phase he just completed was very similar to the one that he finished at the end of April. His ANC at that time was 507 on April 24th. And than ended up being delayed for 2 weeks and hospitalized for dehydration on May 1st.

Bennett has ate some today, small quantities but did manage to get in 3 meals! Yes!

Bennett blood pressure at the clinic was 135/87. His temperature was 99.7 and he weighed the same at 122.

Bennett’s nose and head is still stopped up. We are trying some nasal spray and sudafed to hopefully clear it up. He was very tired today,we got home around 3:30 and he went to bed.

His temperature at 6:00 tonight was 100. I am really worried that it is going to go up and he will have to be admitted to the hospital. I really thought today we would have to stay because of a temp. I packed the car this morning and have left it semi-packed. I will be checking his temp every 45 minutes tonight until it goes down. If it reaches 101 or higher, I will be calling the hospital. Please pray for no infections, no fever, and no hospital stay.

All the nurses in the clinic today were dressed up for Halloween! Fun! I also had a nice visit with Ethan’s Mom that we met back when Bennett was in the hospital. We have met very many brave, inspiring and loving families – please pray for all the children with cancer at SLCH!

Bennett is not feeling well. Last night, he threw up right after dinner and stayed in bed most of the day. He started running a low grade fever around 4:30 that was 100 degrees and than went down to 99.

Bennett did not get up today until about 6:00 p.m. He had a headache most of the day and was dizzy. He took pain medicine for the headache. I didn’t want him to take tylenol because of the low grade fevers from last night. I started him back on zofran around the clock because of his uneasy stomach. He did eat a few pieces of chicken strips for supper, took a shower, and did some homework. Than back to bed.

His nose and head is stuffy so I called the nurse and ask what he could take for sinuses. He took a sudafed about three hours ago and already can breathe better.

We go to St Louis in the morning for blood counts and an iv push of vincristine.

Thank you for your thoughts, prayers, and checking in on Bennett!

Bennett is pretty tired today, he has been in bed all day. We got home around 2:00 am so rightfully so that he is tired. He was tired yesterday though too, he was in bed until it was time to leave to get to the hockey game.

The St Louis Blues game was Fun! Blues won 4-2! Yeah! It was a great time! After the game, we went to the press conference room and met Dan Hinote, his girlfriend – Amy McCarthy and the goalie, Manny Legace. Pretty cool! Thanks to Hinote Heroes organization and Dan for all that do with SLCH!

We had some disappointing news though, we saw Drew, age 17 that was diagnosed at the same time as Bennett with ALL. His Mom said that he had many complications and almost lost him. He can no longer take vincristine, high dose methotrexate, doxorubicin, or the PEG shots because of the life threatening side effects that he got. He only received about 4 months of intense treatment. Please pray for Drew that he will stay in remission.

Here are a few pics. This was our first hockey game as a family and had a blast, thanks to Hinote Heroes!

What a Miracle!  I had been meaning to post this pic of Bennett and Brittani from a couple months ago when she came to over to spend some time with Bennett – Finally they are both home and don’t have to visit each other in the hospital!   It had been a long summer with her lung transplant and a blessing that God answered many prayers! We are so happy that she is home, going to school and enjoying life!  We love you Brit!

“The LORD has done great things for us, and we are glad.” Psalm 126:3

We’re Home! It was a long day but we were so happy that Bennett did not get a fever today with his transfusions! We left at 6:00 a.m. and got home at 5:30.

His blood pressure was 142/84 at 8:30 when they checked it. It pretty much stayed around 122/82 most of the day. They started the platelets transfusion around 9:00. Everything went well, it just takes time to wait for the blood to come up from the blood bank. They took a blood draw as soon as we got there so they good match his blood to the donors for the red blood cells transfusions.

Bennett is feeling good. His appetite is about the same. He picks at his food and might eat a 1/4 of it.

We were given St Louis Blues hockey tickets for tomorrow nights game sponsored by the Hinote Heroes and SLCH. Bennett’s ANC is really too low to go but I think we are going to try it unless he starts feeling bad. I feel more comfortable for him to go since I will be with him. I can make sure he doesn’t touch anything, wears a mask, uses hand sanitizer, etc. We will be sitting by other SLCH cancer patients so they are particular about being germ free too.

Our next appt is Tuesday for an iv push of vincristine. We will wait and do CBC test to check ANC and blood levels that day. This is the last treatment for the 4th phase! yeah! Another one down! 2 more phases to go before he reaches maintenance!

“So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight.” 2 Corinthians 5: 6-7

I thought I would share this story from the St. Louis Blues, it’s pretty cool! The boy in the picture below is the brother of our friend from Paxton, IL. Tanner was donating his stem cells to Ryan this past Monday at SLCH. Please pray for Ryan as he has been in SLCH since September 8th because of having no ANC and had been fighting fevers.

Hinote’s Heroes Aims to Make Impact in Community

Chris Pinkert | St. Louis Blues Online

Oct 25, 2007, 10:00 AM EDT

Six-year-old Tanner Coe’s face lit up the moment Dan Hinote walked in the room.

Coe had been lying in bed all day, bored and cycling through the channels of the mounted television set at St. Louis Children’s Hospital on Monday before Hinote, along with several of his Blues teammates, stopped by for a visit.

Dan Hinote plays an Xbox game with Tanner Coe, 6, who was helping his brother Ryan, 14, in his fight with AML leukemia (Photo by Mark Buckner).

“It was neat. It helped cheer him up,” said Michele Coe, Tanner’s mother.

Tanner was donating stem cells to his 14-year old brother Ryan, who was diagnosed in 2006 with Acute Myelogenous Leukemia. Ryan recently completed three rounds of chemotherapy and was cancer-free, but needed a bit a bit of a boost to help his body recover.

Tanner, it turns out, was a perfect match and more than willing to help his older brother.

“Tanner’s been a real trooper,” his mother said.

It seems fitting, then, that Hinote and his teammates would show up and present Tanner with a camouflage T-shirt bearing the logo of ‘Hinote’s Heroes,’ a charitable organization started by Hinote to help improve hospital conditions for children who are battling cancer and their families.

On Monday, Hinote donated several laptops and Xboxes to St. Louis Children’s Hospital so that kids like Tanner and Ryan wouldn’t be so bored if they have to make another trip to the hospital.

“If we can keep the kids happy at all times, as much as they can be in this environment, then I think overall, you’re going to see kids improve,” Hinote said. “If that means having laptops, Xboxes, DVD players, trips or tickets to a game, if we can help keep the morale on a higher level, I think their treatments will work that much better.”

Destiny Allen, a 12-year-old from Wood River, Illinois with Acute Lymphoblastic Leukemia, said that having computers and video games can be a huge help in taking a child’s mind off their treatments.

“It can keep them occupied, like whenever people get blood transfusions, sometimes they don’t like to see it,” she said.

Allen has undergone 2 ½ years worth of chemotherapy and expects to receive another year’s worth of treatment. She has made more than 15 trips to the hospital since her diagnosis but she intends to be cancer free by time she gets to high school, where she hopes to participate on the cheerleading squad and become a teacher after graduation.

These are the stories that really drive Hinote to make an impact in the community.

“It’s truly an inspiration to see how great these people are fighting this terrible cancer,” Hinote said. “They’re upbeat, they’re happy and they’re great about what little life they have or may not have, and they live day to day.”Hinote’s energy and passion for the game of hockey are evident each time he steps onto the ice for a shift with the St. Louis Blues, but his energy and passion off the ice probably better defines him.

Bennett’s counts really dropped today, I am so glad we got the blood test. His ANC has dropped from 1,272 to 480. Anything below 500 is a severe chance of infection. I called Bennett at school and picked him up since his ANC is too low to be at school.   His platelets also dropped to 19. On Tuesday, they were 10 and he got a transfusion so the nurse was surprised they had dropped back down so far. His hemoglobin dropped from 8.6 to 8.1.

He has to go to St Louis tomorrow for 3 blood transfusions. Platelets and 2 pints of red blood cells. We will be leaving at 6:00 a.m. If everything goes well, it will take at least 6 to 7 hours or so to get this all accomplished. The nurse told me to bring our suitcases and prepare to stay if Bennett’s has a temperature, he will automatically be admitted for 2 days for the fever. She said there is a very good chance that he could get a fever because of having a low ANC and getting all of this new blood. They check his vital signs every 30 to 60 minutes while receiving the blood transfusions.

He feels pretty good considering. His appetite has been minimal that last couple of days. Last night his stomach was bothering him and he took a zofran pill. He had been taking them around the clock until Tuesday. I think this was a plus of him not throwing up like he did back in April with the Arac chemo.

He took his last dosage of the chemo pill, Thioguanine on Monday. We were glad for one less thing to remember.

His mouth sores are some better. He is not asking for the magic wash or pain medicine for them so that’s good.

His blood pressure tonight was 130/90. We will see what it is tomorrow as they will take it several times while he is getting blood.

Your prayers are appreciated that Bennett has no fever and the blood transfusions go well. Thank you for uplifting his name to the all mighty God!

“Ask, and it will be given you;search, and you will find.” Luke 11:9

Bennett’s sores in his mouth are still bothering him. Sometimes really causing pain and very uncomfortable. He has two cold sores in his bottom lip. The Dr. said yesterday that he could take vitamin C to try to help. I was glad to hear this because in the next phase which may start Nov. 6th (depending if his ANC is 750) he will get several iv pushes of methotrexate. He hasn’t had an iv push of methotrexate before but the main side effect is mucositis. This is a lesser dose of the high dose of methotrexate that he had in the hospital. So I am hoping that the vitamin C helps clear them up before he starts the next phase because he had really bad mouth sores with the high dose of methotrexate.

Yesterday, he weighed the same at 122 pounds.

His leg looks pretty bad. One of the shots bled right afterwards yesterday and now is all bruised. He went to school today but missed 1st hour of P.E. I didn’t want him trying to be tough and participate because his leg has to be swore.

He came home and went to bed after getting his belly full at Gpa/ma Page’s this afternoon. We were going to go to the movies tonight but he is too tired to go. He is still in bed sleeping.

We go in the morning for a blood test at our local hospital.

“O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.” Isaiah 64:8

Well, it’s been awhile since we have had a quick appt at St Louis. We left at 7:15 and I got home around 6:00. I took Bennett straight to the middle school girls basketball game.

Bennett needed a blood transfusion today again. This time it was his platelets count that was too low at 10. It needed to be at least 50 before he could get the PEG shots in his legs. So he had a blood transfusion of platelets. Platelets are yellow, it is weird that they are this color and are a part of the blood.

Dr. Shenoy wasn’t as concerned with his high blood pressure until it stays in the upper 90’s for several weeks. I showed her my chart from the last two months and she said it hasn’t been high enough consistently to cause any problems. She thinks it’s elevated from all the chemo and steroids that he has had. We are to continue to keep track of his blood pressure daily.

Bennett mentioned to the Dr. that his hand and sometimes feet have sharp pain in them from time to time. She did a blood test to check magnesium and calcium and both were normal. This is a side effect from the chemo vincristine. He had this drug weekly for 3 weeks and was off for 2 weeks and now he will get it for 2 weeks again. She said we may have to lower the dose of this drug if the pain gets worse or have further problems. His feet and hands could go completely numb to where it would be difficult for him to climb stairs, walk, or hold anything in his hands.

Prayer for Bennett is so important that Bennett doesn’t get any severe side effects from the chemo drugs and also that the drugs are killing any leftover leukemia cells and preventing any new ones.

The 3 shots in Bennett’s legs went well. He does have a bruise from one of the shots. We had to stay an hour after he got them to make sure he didn’t have any acute side effects. He also got an iv push of vincristine.

His ANC today was 1,272 which is good. Hemoglobin was 8.6. Last week it was 8.1 and he got 2 RBC transfusions. Since this is lower than what they would like but not low enough for transfusion, we are to get blood counts Thursday morning at our local hospital to check all counts but specifically hemoglobin.

“Do not worry about anything, but in everything in prayer and supplication with thanksgiving let your requests be made known to God.” Philippians 4:6