Our Clinic Champ

Well Everett and I braved the ice storm last Sunday night to make it to Pittsburgh for his 8:30 AM appointment.  We enjoyed watching cars turn sideways in the middle of the highway any many off to the side of the road with their flashers on.  Good news is we made it without a single slip.

I wanted to give everyone an idea of how things work at the clinic.  You check in and they quickly get you into a numbered room that is about 10' by 8' wide with a bed, many machines, and two seats.  Since Everett's treatment calls for him being monitored by ECG for the entire time, he cannot move more than a 6' radius for approximately 3 hours (now you all know why we're so proud of him).  He is simply amazing for a 2.5 year old.  He will sit quietly in his chair and play with a toy, color, or watch TV. One of the nurses asks him to dance every morning and he obliges.  He can get down and move a little bit but he never tries to get away or throws a fit.  I really don't know how he does it.  I get very anxious when our time is almost up.

Everett is on a bunch of medications now and trying to keep track of the dosing schedule requires a calendar.

• Tretinoin (ATRA, which requires mixing with soybean oil for oral dosing)
• Sulfamethoxazole (Bactrim)
• Ondansetron (Zofran)
• Clotrimazole (For what we believe to be ringworm)

I found a sign where one side said Dirty and one said Clean.  Guess which side I made Everett hold while I took his picture?

Here's another one with all his wires and tubes attached:

It seems like each week grows a little harder on all of us.  Leaving becomes more and more difficult and Avery wasn't happy at all with us on Sunday but we will get through.

Love you all!

Quick Update

Just wanted to let everyone know that Everett's Arsenic treatment is going well this week.  Not a single incident to report.  Everett and Mommy are still at Ronald McDonald but since he's doing so well, Mom is going to take him to the Children's Museum in Pittsburgh (just don't tell Avery)!  They should be headed home around lunch time Friday.

That's all for now.  If anything happens we'll keep you updated.  Thank you for your support and God Bless.

Heading Back

Mom and Everett are heading back to Pittsburgh this morning.  On Friday Dr. Tersak (Erika) called to let us know that his ANC levels are over 1,000.  We were very excited to hear this and eager to get him back to his treatments.  This will be the start of a 5 week treatment, called Consolidation I.  It will be Monday through Friday and will be outpatient provided there are no complications.  Meaning if all goes well, Mom and Everett should be able to be home Friday afternoon for the weekend.

The treatment will be his Arsenic Trioxide given via IV over the course of 2 hours in the clinic and he will get his ATRA every day orally for 2 weeks.  After the first 5 weeks is over, there's a 2 week break, and Consolidation II starts.  Mom will be doing the first, third, and fifth weeks, dad the second and fourth. 

Despite waiting and wanting the treatment begin it was very difficult for me to watch them leave today.  I had planned to be there for the first day of treatment 2 weeks ago but since it was pushed back 2 weeks and he has already had his broviac line and bone marrow test I figured mom could handle it.

Happy Valentine's Day honey I wish I could be with you and Everett today.

UGH...

Well, Everett and Mommy are headed back from Pittsburgh.  Looks like his ANC levels are still only 700 (looking for 1000+) and his treatment won't start for at least another week.  This is very frustrating as it will push his treatments back a few weeks and it's another week we have to pay for our Ronald McDonald house.  The doctors don't seem concerned with this and if he isn't over 1,000 in two weeks, his treatment will start regardless.  A visiting nurse will be by on Friday to get blood samples so we won't unnecessarily drive to Pittsburgh again to turn around and come home.

I guess if we have to have bumps these aren't too bad but every time we emotionally prepare for this round to start, we're sent home.  Hopefully it's just one more week...

REMISSION!!!

We got the very best news that parents' of a child with leukemia could get today...Everett is in remission after only one round of treatment!  The doctor called this afternoon to give us the news--she said there was no trace of leukemia in his bone marrow biopsy.  We are relieved and so thankful to our amazing God.  We know that this is just one of his many miracles.  We want to say a special thank you to everyone who has been praying for Everett.  Our prayers have been answered. 

Everett will continue with his treatment schedule as planned to ensure that his leukemia stays in remission and to reduce the risk of relapse.  The good news is that we know that the medicines are working as they should, and we don't have to live with the constant fear that maybe his cancer won't respond to treatment.

Everett and I will be heading back to Childrens Monday morning for his first round of arsenic (if all goes as planned anyway).  We are hopeful that this round of treatment will go as smoothly as his first and will continue to keep everyone posted on his progress.  

We ask that you keep our family and Everett in your prayers.  He has a long way to go until he is considered "cured" and as we have found out, anything can happen. 

Sent home...

This will be lengthy, so get a coffee and get comfortable.

We got packed up and headed down to CHP to start round #1 of his consolidation treatments Sunday night.  We were unable to get a room at the Ronald McDonald house so we were forced to stay about 2 miles away at the 'Family House' at an increased rate.  It was about 8:00PM and we were heading out to use our Olive Garden gift certificates, when Everett ran out the door to push the elevator buttons.  Unfortunately, on the other wall was an open fire alarm pull right at his height, just begging to be pulled.  He was about 2 steps in front of me and I even started the 'Noooo' but it was too late.  So we walked down the steps and told everyone who the guilty party was.  Everett enjoyed the lights and sirens, and later the firetruck but wasn't happy when he thought he had done something wrong.

We had to get up the next morning at 4:30 to be in the clinic at 5:30.  Everett did well on very limited sleep and was swept away around 7:30 and seemed to be ok with everything that was going on.  He successfully had his Broviac line put in his chest and had his bone marrow aspirate performed.  I think he has a very high pain tolerance, because unless he touched his insertion point or kneeled on his tubes, he didn't complain of any pain.  He was dead tired and we finally got him to sleep around 3:00PM.  Everett's line looks like the one below, only his goes down to his thighs.

Broviac Line

Having two wires, one blue, one red, hanging out the bottom of his shirt, creates an issue for a curious young boy, including attempts to chew on them.  (Mom did a great job today replacing his dressings and installed a 'bone' to shorten the lines and keep him from playing with them).

During his nap, the doctor came in and told us that his ANC levels (610) were too low to start his Arsenic treatment this week.  So we packed up and headed back home very disappointed.

It was about 7:00 so we decided to stop and have some dinner.  We had taken 2 cars and when Val pulled into the restaurant, Everett threw up about 20 pretzels worth on himself and his car seat.  We later came to the agreement that his anesthesia and morphine might have upset his stomach.  So we got him cleaned up, ate dinner, and drove the hour and a half home.  The anxiety of the situation made for an expedited and uneasy dinner.

We were both hoping to make the blood drive last night, but we didn't get home to close to 9:00.  We heard there was a great turnout and the boy's daycare even held a fundraiser and had an envelope to give us.  This will be very helpful as we will be checked into the Ronald McDonald House for 10 out of the next 12-13 weeks.

So, we're all back at home, Val is watching the boys today and Dad is working.  We changed his dressing, which is a process and sometimes painful for Everett but he hung in there like a champ.