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 :)