First Transfusion - Day 22

We spent 10 hours at the Children's Hospital for Charlie's 3rd Clinic visit. While his ANC number (susceptibility to infection) came back at 3600 which is FANTASTIC, his hemoglobin went down another unit to 7.8 (normal is 14) so we stayed so he could receive 2 units of blood. It is pretty normal for chemo patients to get transfusions, because the therapy kills good cells along with cancer cells and the good ones need to be replaced if the body doesn't regenerate in a timely matter. In the picture above Charlie is calling room service for his lunch before the 4 hour transfusion began. We also had a quick trip to the ENT's office on the second floor so he could look at Charlie's left ear. On Monday I noticed the ear was draining and the tubes he had put in last June had come out and was hanging out in his ear canal. The ENT confirmed that his ear is indeed infected. His first infection while having Leukemia. Its scary since his immune system is compromised, but he is fighting with such strength that the doctors gave us an antibiotic ear drop, warned us of fever and sent us home. I am sure he will bounce back from the ear infection, but worse case scenario is a day or two stay inpatient and IV antibiotics.
Charlie has gotten back into the groove of potty training after a three week set back. The hospital stay, leg pain and laxatives put him back in diapers for awhile, but he's getting back to where he was... slowly. I need him to start walking more and more so I dont have to lift him up onto the potty each time, its killing my back. We have reinforcements coming on Sunday!!! Mary, Charlie's Grandmommy is heading up here from Tyler to help with the heavy lifting and to keep me sane during the long days at home with a chemo-couch-potato. :)

A Welcome Gift

Well today was another tough day dealing with the intense diaper rash, but all that was made insignificant due to some unexpected progress.

Today Charlie took his first unaided steps in more than month. He walked all the way from the bathroom back into the den without any help. Later in the day, he also walked unaided out of his bedroom to the top of the stairs after a nap and did more walking around the house while holding our hands.

It was so relieving and reassuring to see concrete evidence that the torture we are putting his little body through is for a good reason. Yes, we have seen the numbers on his counts go down and that is great news, but those are still just numbers on page. Ang made a comment on seeing him walk that she could finally tell how tall he was. How strange it is to think that for the last month or so we haven't seen him fully upright. He did actually look taller. It was like seeing him again for the first time in a long time.

This small bit of corner turning could not have come to soon. We are hoping to build on this to take some of the burden of Angela during the week. Pretty soon she will be less able to pick him up, so it is huge that there is hope that he will be more self-sufficient down the home stretch to new baby.

Side Effect De Jour

Despite that grin, it's been a tough couple of days since the last post. I'll spare the details, but basically we have been dealing with diaper rash on steroids . . . literally. From all we've heard and read, some residual drugs can be flushed out and cause irritation. This is only compounded by all the laxatives we have pumping through his body to combat last week's "side effect de jour". Which is exactly what we are expecting for the next long while, to basically fight the week's side effect that is causing whatever discomfort. We fixed the constipation, now it's diaper rash. Next week? Who knows? The doctors only have to fight the cancer. Lucky %@$+@^&$!!!

So, for those of you keeping score at home, we now have a child that doesn't walk and won't sit up. We are expecting a LOT of Disney in our future. Thank you, thank you, thank you to everybody keeping us in constant supply of new movies. It helps keep us sane.

There are some bright spots, small though they are (we have to recognize them and hold on to them whenever they might appear). Charlie has showed minor improvement in his legs. He is not walking, but he is more stable when he stands. In an effort to help him gain (or at least maintain) some strength in his legs we make him stand up before we pick him up. He also had his friends Sarah and Rachel from down the street stop by and he gave them the best reaction we have seen in a few days. He actually sat up to watch his movie with them. We told them that they must come back to coax him out of his Thomas the Tank Engine stupor. A little distraction never hurts . . . Mom, Dad and (dare I say) Nana are not distraction enough these days. We are more of a waitstaff. "Yes Mr. Charles, would you like juice or water." "Yes Mr. Charles, the chef does have Mac and Cheese on the menu, will you be dining here in the lounge or at the table?"

Now you know why he has that big grin on his face, don't you.

The Chemo Food Groups

Cheerios, Milk, String Cheese and Noodles have become Charlie's Chemo food groups. The doctors said that the chemo and steroids will make him really hungry and will change his food preferences. All he wants morning noon and night are noodles. I think we should take stock in Ramen. I can't remember the last vegetable this kid consumed. The good thing is that it looks like his appetite is back after about 14+ poopie diapers. So things in the 'FOS' department look to be moving :) He is making room for more noodles, good God that is all we hear about.... noodles!

Monkey's Tubies

We play doctor on Monkey. This started in the hospital in an effort to educate Charlie on what was happening so that he might develop a comfort level at a quicker pace. This week Charlie and I started playing doctor on Monkey at home. We take his blood pressure by "huggin" his leg with the cuff. We look in his ears for his temperature and we give him medicine in a dropper in his mouth and sometimes Monkey drinks his meds like a big boy from his cup.

The picture above shows Monkey's "Tubies" and butterfly. We took an actual port access device from the clinic and snipped off the sharp needle end located under the grey plastic part. We super glued the butterfly to the bandage cuff so that we can practice accessing Monkey's port and giving him chemo through his tubie. This is what Charlie has attached to his port right now and what the Chemo is pushed through and blood is drawn from over the next 3 years. Normally the butterfly and tubies are added in the clinic or hospital and then removed before going home. This time Charlie came home with his tubies a first for us. Hopefully more doctor play with Monkey will help Charlie understand his tubies and not scream his head off when the nurses try to touch him or even look at him :)

Two weeks into treatment - Day 14

Today was our second clinic visit. Last week were were scheduled at 7am which was great, we didn't have to worry about food or water for 8 hours before since he was asleep. But this time his appointment was at NOON so we woke him up at 3am for breakfast so he might make it through. He screamed at us in frustration all morning and could not figure out why we were withholding the goodies like Cheerios, milk, cheese sticks and noodle dishes (his new main food groups).

As I posted earlier Charlie has been constipated and throwing up. When we mentioned this and the fact that he isn't hungry or eating to the oncologist, she immediately ordered additional blood work and looked over his x-rays from Saturday night. Charlie had his bone marrow biopsy and while he was sleeping it off in the recovery room Dr. Albano brought in her diagnosis that read, "Patient is full of poop. Administer Miralax and Ex lax alternating every 6 hours until relieved." With a smile she said the technical term for what is going on with the little guy is FOS, I'll let you figure that one out ;)

Due to the extreme constipation Charlie did not get his IV chemo since constipation is a side effect of the Vincristine. Instead he got a bag of saline and sugar water to even out his salt and low blood sugar. Our quick 2 hour visit turned into almost 5 hours so he could get enough fluid in him.


The best part of the visit... Based on the blood and bone marrow samples taken today Charlie has NO VISIBLE CANCER CELLS!!! I wouldn't say he is in remission or cancer free, there are billions of cells in his little body and the sample sizes aren't great enough to make that statement yet. At the end of this month he will have another sample taken and sent to a lab where they will do an in depth look and tell us for sure. Dr. Albano was VERY excited about his numbers. Even the nurses said they haven't seen her that pleased with day 14 labs in a long time. Charlie's ANC, or his number that determines his ability to fight off infection and remain social was 700. It was lower than last week (1330) but still high enough (greater than 500) that we can say go to the grocery store and not worry. In comparison, one of the other kids on Day 14 treatment, Bella's ANC was 2. Scary.

We will head back to the Clinic after Mt. Charlie erupts his blockage for the dose of chemo we missed. It doesnt sound like we will be too off track as long as that happens in the next day or so. They left his "tubies" in place so that when we do go in we don't have to traumatize him with another port access at the next visit. More on "Tubies" to follow...

Saturday Night ER Visit - Day 12

Every young couple should have exciting plans on Saturday nights right? Well Chad, Charlie and I spent a few hours Saturday night in the Children's hospital ER. Most of the week Charlie was throwing up the majority of the snacks and food he took it. I had contacted the on call docs over the weekend and the third time I called with concerns of dehydration and the fact he wasn't getting better, the doc asked us to grab our over night bag and head to the ER for an abdominal exam and x-ray.
The oncology patients get special treatment in the ER. We walked in, the on call doc had called ahead and registered us, and 4 mins later we were escorted to a private, isolation type room. We had two nurses and two doctors go over him. My favorite part was when the German doctor wearing a face mask asked my sleepy three year old to tell her exactly where his tummy hurt through a VERY thick accent. I could hardly understand, I'm sure Charlie was clueless. After the X-ray the main doctor came in and told us that Charlie was VERY constipated and that can result in throwing up. Basically his little body was refusing any other solid food because he was so backed up. The doc had us up the laxatives and gave us a script for Zofran to combat the nausea.
We were glad that our first cancer related trip to the ER was for something relatively mild and not a life threatening infection. Hopefully Charlie can pass what he needs to and get back to feeling semi-normal. This will save Mommy cleaning up vomit and save Daddy from unwanted bath times. Did I mention the Zofran cost $141.00 after insurance. Liquid gold if it stops the puking :)

On a Lighter Note

We had our ultrasound last Thursday (yes, we have been spending a lot of time in doctors offices lately) and here are some pictures.  Since we are not finding out what we are having, it's mainly face shots.  I thought these were rather good pictures, though the last two (on the right) kind of creep me out a little.

Charlie's Way or Daddy's Way - Day 11

It's the end of our first real week. That is, being at the house without the nurses to help do things for us. Charlie is showing progress in some areas, but not others. We had some minor successes with taking medications. He is given two choices, Charlie's Way or Daddy's way. Charlie's way involves lining up the meds in little cups, shot glass style and having him shoot them down. Daddy's way involves syringes and a lot of screaming. He has opted for Charlie's Way twice, but we had a set back the second time when he threw everything back up. He hasn't opted for that way since.

Overall Charlie is still in great spirits, he is just having a hard time keeping food down. This is our main concern for now, but we may get another med to help that. Yea, another med!

We did get some more great news yesterday. The nurse called us back with the results from his bone marrow aspirate (biopsy). His first draw in the hospital showed that his marrow was 65% cancer. This shows how early we detected the Leukemia since most kids come in at 100%. His draw from Wednesday showed 6%, so the chemo is kicking butt. The nurse said they look for less than 5% before they stop doing weekly biopsies on the bone marrow and that they will stop doing the weekly spinal taps. So coming up this next Wednesday is another bone marrow draw (hopefully his last), no spinal tap and then his chemo injection.

He is still not walking due to the bone pain from the leukemia. The doctors mentioned that this is pretty normal and hopefully by the end of our first month he will start bearing weight on his legs again. Angela looks pretty funny 7 1/2 months pregnant carrying around a 3 year old. Not sure how much longer she can keep that up. Her doctors were informed of our news and are already talking cord blood harvesting. Lifting Charlie and the chemo poses no threat to her, so that is good.

Hopefully the great news keeps on coming. It sure does sound like the thoughts and prayers from all of you out there are working.

1st Clinic Appointment - Day 8

Charlie had his first clinic appointment this morning which included a spinal tap, bone marrow withdrawal and two chemo injections, one in his spine and the other through his port. For those who aren't aware, while Charlie was in the hospital they installed a mediport in his chest that sits just under the skin. This is an access point for his IVs, medication and blood withdrawals and means they don't have to reinsert an IV in his arm every time we go in for treatments (which occur on a weekly basis for now). Charlie did spectacular this morning. He was less than happy to go back to the hospital and he screamed while they accessed his port, but he did sit pretty still. Shortly after that, he was put under while they did his punctures. He woke up in really good spirits thirty minutes later with a smile on his face and well groomed finger and toe nails (Mom is really opportunistic). Charlie was then given his second chemo treatment which he took all by himself, no constraining and no crying, and the nurse removed his port access, again no fuss . . . Yea!

We also received the results from his blood work and all of Charlie's number look great. When we first got to the hospital last Wednesday, his blast count (which is essentially the percentage of white blood cells that are cancerous) was 32%. By the time we were admitted to Oncology, seven hours later, his count was up to 40%. While we were in the hospital after his first chemos, we saw the numbers drop to 20%, then 10% and his last draw before we were discharged showed 5%. Today his blast count was down to 1%. Meanwhile, his ANC was mid 1300s. The ANC is a measure of how well his body can fight infections, anything below 1500 means we need to limit his exposure, less than 500 means a transfusion is needed. 1300 is great considering his blood has been constantly attacked for the last week by the chemo.

Dr. Albano also confirmed with us this morning that Charlie is Average Risk ALL. Low risk would have been better, but we are lucky not to be in the high risk category. About 75% of ALL cases fall in the average risk category. This means that we are still able to take part in the leukemia study. Last week, we signed Charlie up to donate extra bone marrow and blood to a special clinic that is researching better treatment paths for leukemia patients. In return, Charlie is put into a random lottery where he will follow one of two paths, Normal Consolidation or Intensified Consolidation. If one path is showing better results than the other, all kids are moved to the better treatment path. No placebos are given in studies involving kids so the only risk to Charlie is the possibility of more intense side effects. If he was a high risk patient, he would have a set treatment path and would not be available for the study.

At home Charlie is still doing pretty good. He is more grumpy than normal and more tired, but on the plus side that gives us more time to relax. He is still not walking, but we are seeing signs of improvement. He is putting more weight on his legs than he used to and is more stable when he stands up. We are crossing our fingers that he will be walking around the house soon. He is also showing signs of improvement in taking his medications. He used to be a good medicine taker, but the hospital stay last week ruined that. So we are slowly making our way back to normal in that respect.

I am hitting high points and this email is already a mile long, there is just way too much information to convey. We will be keeping periodic updates through emails and also the blog (http://charliehooper.blogspot.com/). We will be putting pictures there so we don't clog up any emails. If you have any other questions or information, feel free to email us. It is not a nuisance to shoot back a quick response.

Again, thanks to everybody for your support and for being patient with the dissemination of information, things are just starting to slow down a bit for us.

Meals - Day 7

Our neighbor told us about foodtidings.com which is a website that helps schedule meals for families who need help during tough times. We set up a schedule and sent out the following email to a few folks:

You've been invited to participate in helping with meals for Charlie Hooper Leukemia Phase 1. Feel free to invite someone you know who wants to help.

You can pick a day by clicking on the link below.

http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=43a5b481-51da-47a3-b181-a7f8681fbcb3

Thank you so much for helping with meals!

Chad has class on Tuesday evenings and Charlie's Chemotherapy is on Wednesday, so those are the main days that we will need the extra help.

Any meals are welcome, we have a big freezer so I added Sundays for a little back stock. We also eat leftovers all of the time for lunch.

One of us will be home with Charlie all of the time so drop off is flexible.

**Please Call before you come. The Leukemia can make Charlie very vulnerable to infection, so if you have a cold or worse we may meet you at the door :) We may do another schedule after the new baby...

Again thank you so much for your generosity!
Chad, Angela, Charlie and "New Baby"

Homecoming - Day 5

Day 5 started off with Charlie sleeping till past 8am. Tell me why he cant do that at home on a regular basis...oh yeah the drugs....

Later in the morning, Cody, the education lady, taught Charlie about how to care for his IV port and how it is not scary and that it doesn't hurt. She had a neat doll that she demonstrated on called "Dakota." Dakota's chest had multiple layers of "skin" that she peeled back to show the port and how it connected into the heart. Charlie got his big scary chemo shot, one in each upper thigh around 11am and after an hour of observation, and a quiz on how to administer all of his meds, we were discharged. I am convinced that all of the families look like gypsies while they are moving out of Children's . We had bags and bags of just toys and games and books that visitors and the hospital staff showered upon Charlie. It took many trips to unload the Tahoe.

We arrived home to our favorite cul-de-sac birds courtesy of John and Tonia Wilson. (Thanks Guys!)



Charlie ate a big lunch and did his normal chatter at the table. He took a 2.5 hour nap in his own bed which I am sure felt great. He did tire out pretty quickly when playing with Abby from next door, and with granddaddy on the swing. I expect him to have less energy now given the loss of red blood cells, he's also getting more pale....

He was pretty upset about taking his meds after dinner and it took Me (Mom)15 mins just to get every dose measured out and ready for intake. Learning to take meds again peacefully is going to be a process.

We head back to the hospital on Wednesday for our first clinic appointment which should include a spinal tap, and IV chemo. For now we are going to stock up on hand sanitizer and try to settle into a new routine.

So happy to be home... now comes the hard parts......

Days 3 & 4

Well, day three was pretty busy around here. Charlie had a lot of visitors, which was great. We have a lot of great friends and appreciate all the well wishes. Day three was also full of a lot of education. We learned a little about what life is going to look like for the next year. Just when we thought we had heard about all the drugs, we learned of a new one that we only take on Saturdays and Sundays . . . how strange! Throughout the day, Charlie was in pretty good spirits. He got to play in the toy room and make some trips around the hospital in his wagon.

Day 4 was a different story. We had fewer visitors, which turned out to be a good thing because the effects of the medicine started to set in. Grumpy was the word for the day, though Aunt Lisa was able to coax out a few giggles with "Little Man". Thank you to Cousin Sam for sharing your visit from Aunt Lisa.

The prognosis is still great and it was confirmed today that we will be heading home tomorrow as long as Charlie reacts well to his PEG shot. This was welcome news, but we're a little nervous knowing that we can't rely on the nurses to administer all the medications.

The Bionic Boy - Day 2

Today Charlie became bionic. He received the partly metal port in his chest that will facilitate of all of the IV chemo therapy. He officially started chemo today at 6pm and will finish in 3+ years!

As you can see from this picture snapped mid afternoon, all of the thoughts and prayers are working to keep Charlie in relatively upbeat spirits. Mom and Dad are pretty happy too because it was confirmed that Charlie has the best type of ALL to treat with is type "B."

Now that the operation part and the first chemo is behind us, we would love to have some visitors to pass the days before we can head back to the comforts of our house. Please let me know if you would like to stop by and we will work on scrubbing the orange surgery residue off the kid to make him presentable.

Charlie's Leukemia Day 1

Thought I would take this opportunity to first thank everyone for their prayers and thoughts.

Today we went into Children's Hospital here in Denver for a follow up on Charlie's "Broken Ankle," and through routine blood work, found out that he actually has a rare but very treatable cancer called Acute Lymphoblastic Leukemia or ALL for short.

ALL has a 85% curable rate for children with his factors, being under 10 years old and having a low white blood cell count (less than 50k), meaning we caught it pretty early.

Charlie is going to have a ton of tests over the next few days to further classify his type of leukemia for a tailored treatment. As soon as we know when things are going to happen we can start having limited visitors.

Chad and I are staying in the hospital with Charlie for probably the next week, with family and friends watching the house and providing support.

The doctors anticipate a three-year treatment process including chemo but are VERY optimistic.

I'll try to keep up with the blog as much as I can so folks can stay in the loop

We love you all and thank your for your continued prayers.

Chad and Angela