Daniel at Two Months

We've posted quite a bit about Charlie and his cancer journey lately, but Daniel has had a major milestone as well, his two month birthday. At his doctors appointment yesterday Daniel weighed 12 lbs. and 10.5 ozs and was 23.25 inches long putting him in the 73rd and 57th percentiles respectively. He really is a good baby, he hardly cries, is a good eater (obviously) and is starting to smile and make cute baby noises. I guess we will keep him ;)

I took Charlie to have his picture taken every month till he was a year old and I have them all in a book that we flip through occasionally. I hope to create a similar book for Daniel. Click on the pictures below to see the JC Penny shoot and an album we created.

Dad goes for the Match

Hair today gone tomorrow...

It's gone.

DI - Phase 2

Charlie's Chemo treatments have been delayed at least 10 days due to his blood counts not being high enough to withstand more drugs. This is pretty common at this stage in the game. All of the doctors and nurses prepped us for it. They warned us that the 10 day "break" between Phase 1 of Delayed Intensification and Phase 2 usually saw kids with infections, hospitalizations and other delays in treatment. On Tuesday Charlie went back into Children's due to a low grade fever and double ear infections. At that point his blood counts were high enough that he did not have to be admitted to the hospital (thanks goodness) he was simply sent home on a STRONG oral antibiotic and ear drops for the next 2 weeks. His infections probably played into his counts being low on Friday causing his delay.

With his immunity so low Chad and I decided that he will not return to Pre-School until he is past this phase of Chemo and in the "Maintenance" mode. The Primrose School has been so accommodating during all of this. I even have the cell phone number for his teacher and they are holding his spot for us at no charge. So for now we are home bound, Charlie, Daniel and Mommy. Taking Charlie out to crowded places is not recommended while his ANC (immunity level) is so low. We take walks and play in the back yard every now and then. Art projects and cooking are on the activity list for this week and we have friends bringing a pizza lunch on Weds. It's hard filling the time when he gets tired and cranky so easily these days. He is also loosing his hair. there are definite bald spots, rather large ones on the back and sides of his head where his pillow rubs the weak follicles away. We may be close to shaving the rest of it off here soon so keep up with the blog, we will post pictures of his cute, chubby, bald mug!


Keep your fingers crossed that when we go back for blood counts the day after labor day that he has bounced back and can continue to fight through the rest of this treatment phase.

Two of a kind

People comment on how much Daniel and Charlie look alike. It amazes us that people who did not know or even see Charlie as a baby see the resemblance. We put together an album that proves everyone right! Take a look and see if you can tell them apart.

Two of a Kind

Acute Lymphoblastic Leukemia Video

AboutKidsHealth: Health A-Z: Acute Lymphoblastic Leukemia
Posting this link to a very good write up and video explaining the type of cancer that Charlie has and what to expect during treatment. It's about a 25 min video from a hospital in Canada. Its very informative.

My Little Monkey

Flashes of Hope

Back in July Charlie took part in "Flashes of Hope," a free photo shoot for cancer patients. Here is a blurb from the website: http://www.flashesofhope.org/

"Flashes of Hope is a nonprofit organization that changes the way children with cancer and other life threatening illnesses see themselves through the gift of photography and raises money for pediatric cancer research.

The portraits, taken by award-winning photographers, help children feel better about their changing appearance by celebrating it. For families of terminally ill children, it's especially important to have a portrait that preserves forever the beauty, grace and dignity of their child."

Charlie really did not cooperate for the photographer. I had Daniel with us who was 2 weeks old at the time and I was VERY frazzled by my obnoxious 3 year old's behavior. Take a look at the pictures above and you will get a better idea of how it went. As my sister-in-law says, "It captures the moment." I think we may try and do another shoot after the first of the year when his treatment has slowed down to once a month and it is not so scary to go to the hospital.

I urge you to take a look at the website and make a donation. $25.00 funds an entire shoot, leather book and access to all of the photos for the participant.

Holy Moly!

Charlie's craving d'jour from the steroid this phase has been pizza. Every morning he wants pizza, 30 mins later he wants pizza, all day he wants pizza and Chad and I have to hear about it CONSTANTLY. We decided to take him out to lunch to Anthony's Pizza and well... shut him up :) He was so excited when they put the pizza on the table that he yelled "Holy Moly!" The pizza was HUGE. Never buy the 18" pizza at Anthony's without a soccer team, or two teen age boys with you. We came home with a ton of pizza. By 7pm Charlie said his tummy hurt, most likely from the 5 pieces of pizza he consumed in 5 hours. A little extra prilosec and zantac hopefully helped. You can see in the picture his face has filled out again like it did on the first round of steroids. I'm pretty sure that tonights dose is the last of it for the remainder of the 3 year treatment. We are VERY happy about that!

Unhappily strolling

This afternoon we took Charlie and Daniel out for a quick stroll. Charlie is pretty tired and weak from the chemo and we thought a little ride outside of the house would be fun. Daniel cried the entire time so we had to cut the route short. That's probably why Charlie looks so desperate to exit the stroller after 20 mins of straight crying. I'm looking forward to happier and quieter walks this Fall.

We Love State Farm

A clogged drain line backed up raw sewage into the basement last week. What a great way to come back from our quick Tyler trip, to a smelly, squishy basement. I entitled this post "We love State Farm" because our agents have been fantastic through this whole ordeal. I was pretty freaked out that horrible bacteria was openly hanging out in our basement while Charlie has a suppressed immune system. The insurance company had a cleaning crew out here quickly to remove the hazardous materials including all of the carpet and drywall, As you can see from the picture, our basement was torn down to studs and cleaned with scary-potent chemicals to make things sanitary again. We met with insurance adjusters and contractors and in the end we will have a refinished basement that is completely up to code and better than it was before.

Delayed Intensification - Chemo

Charile's delayed intensification continued today. I have neglected to write about the details but we started the fourth phase of treatment at the beginning of this month. It is 8-12 weeks in duration and a very intense portion of his treatment where he will be getting eight different forms of chemo. Three of them he has never had before, and two he has had only once. Every doctor, nurse, parent and friend in the know has prepped us for the worst, low levels of immunity, fevers, mood swings, and side effects galore. We are back to every 7 days in the oncology clinic. The first visit he had a spinal tap and two different drugs in his IV. Then the IV meds for two more visits combined with an oral steroid twice a day every other week. We are already seeing effects. This past Friday he had a low grade fever and we ended up in clinic to be informed that he has a cold (duh we knew that). His 'roid rage is back as well as the food cravings and binge eating from the steroid. I think the thing that I fear the most about this phase is that Charlie will return to the zombie he was during induction or worse, end up in Inpatient at Children's again. I've been savoring the past weeks. Charlie, while challenging as any normal 3 year old is, has been delightful to be around. His personality is developing daily and watching him interact with Daniel is awesome. Having him revert back to the pudgy couch potato who only has the energy to watch a movie and hug his blanket is heart breaking....

In the long run, I have to be grateful for delayed intensification. Grateful. That's really, really hard. I want to hate it all with everything I have. But, I can't. It's saving his life and we will make it through. The docs told us that this phase alone increases the cure rate by 25%! So that is what I hold on to, that number, that piece of knowledge is what I recall through every screaming fit, throwing up episodes and frantic crying during clinic visits.

Quick Trip to Tyler

The first weekend in August the whole family took a quick trip to Tyler. Chad's father was liquidating his wood working shop and we drove down, rented a uhaul, loaded it and turned around and came home. We figure that we spent 28 hours in the car and 32 hours visiting with family. Even though it was a short time frame we managed to visit with Angela's cousins and Aunt, the Breedlove's, and with old school friends and their young families. In the slide show above you see some of the kiddos at Matt Schulz's house plus Charlie in the pool at Willow Brook. We wished we could have stayed longer, but we had chemo on Thursday and Monday sandwiching us in to a tiny time frame. Next time we will stay longer. Charlie does love playing with his Texas cousins and Daniel needs to grow up knowing all of those friends and relatives.