Daniel 6 month Pictures

We took the boys to the Picture People this afternoon for Daniel's six month shoot. It went MUCH better then the last time we tried to have Charlie and Daniel sit still and pretend to be happy at the same time. They had a great special going on and we purchased the high res images so we can do what we want with them.

Happy New Year everyone and enjoy the new pictures.

Ski Trip 2010

Ski Trip 2010

We did go on the traditional Hooper Ski trip the week after Christmas. This year it was at this fantastic house up in Crested Butte. Unfortunately we ended up leaving after 3 days because everyone was getting sick including Daniel. We did enjoy seeing all of the family and the limited time on the mountain. Hopefully next year we can all stay healthy.

Croup

Last night we had the joy of waking up at 2am to Daniel coughing, wheezing and gasping for breath. After a quick call to Dr. Mathie our pediatrician,(yes she took the call at 2:30am how awesome is that) we headed up to the Children's Hospistal Emergency room. The Doctor on duty that night said he had never seen such a happy baby with croup! The treatment,come to find out, is an oral steroid. The same steroid that Charlie is on as part of his chemotherapy maintenance drugs.  He is doing much better today after the drugs and we are looking forward to a less croupy Christmas!

Santa Dan

Daniel's teachers at day care dressed the babies up and took pictures for the Christmas ornament they made. I thought this picture was too cute so, up on the blog it goes! Merry Christmas.

Picassa and Picnik

I've been playing with getting a new photo album together to chronicle our trip to South Bend over Thanksgiving. In that process I have found the photo editing tool form picassa called picknic. I'm addicted. You can do some fun and easy, amateur stuff. Here is a polaroid from the cold, cold day we chose to walk around campus. Poor baby his snot was starting to freeze!

Christmas Card 2010

Season's Greetings
Wishing you the best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.

Chad captured Charlie singing Daniel all of the songs he has learned at school. We uploaded three new videos to the YouTube channel, check them out.

Its looking better

 

Remember our destroyed basement from August? Its looking a lot better! Just a little touch up and finishing work and we will be contractor free (and broke :) )

Happy Sunday

Pretty happy to go out for lunch today!

Daniel Four Months

Daniel 4 months

This month we had school pictures taken to capture his official 4 month image, but here are some good candid ones. At Daniel's last doctors appointment he weighed 14.65 pounds and was 25.5 inches tall. Surprisingly enough he is only in the 40th percentile on weight, but 70th in height.

Mountain Kid

Charlie in Breckenridge in the beginning of October

Flashes of Hope Part Two

Flashes of Hope Sept 2010

This round went so much better then back in July. I love them all

Halloween 2010

It was pretty chilly out for trick or treating so Charlie opted for his "Space Ranger" costume that he got from Granddan and Garney last Christmas. It was perfect. Daniel kept with his Snoopy bunting bag. He was toasty warm and enjoyed seeing all of the neighbors.

Halloween Preview

Charlie's school has a party and a costume parade every year. Last year he would not put on his dragon costume. This year Mom got creative. I think he looks great! Now if I could get him to say "I got a rock..."

Pneumonia Scare

Last week was scary. I went to Dallas on Tuesday night for meetings all day Weds and Thurs. I was nervous leaving them boys for the first time, but went anyways. Early Thursday morning at 2am Chad called my cell and woke me up to let me know he was taking Charlie to the ER with a 102.6 fever. I waited to hear what the doctors found before hopping the 6am flight out of Dallas (a day early) and meeting them at home. The ER took blood samples and x-rays but couldn't find anything. They sent Chad and Charlie home around 5am and told them to head to clinic later in the day for his normal team doctors to evaluate him. Nana was with Daniel at the house during this time. Charlie came home and vegged on the couch until around 9am his fever was 105 and we rushed him back to the hospital. They repeated the blood work and had a new round of xrays. This time they found pneumonia in his lungs directly behind his medi-port! They pumped him full of IV antibiotics and fluids and by 5pm Thursday he was a new kid, no fever, sleep deprived but feeling much, much better. Below is a picture of Charlie that morning in his stroller waiting for that critical xray.

Through everything Charlie remained polite and and happy as he could even thought I know he must have felt like a truck hit him. The nurses were so surprised that he wasnt more cranky or clingy. He is such a trooper! Thank goodness we caught this early before filling up too much of his lungs forcing him to be admitted to the hospital. I do not believe we will stay out of the hospital in the next 2.5 years, but now that this is under our belts we may be better prepped for the next time. 10 days on antibiotics and the pneumonia is gone.

Cancer Update: Long Term Maintenance

We've made it through the previous four phases of Charlie's treatment rather well I believe, and we are THRILLED to finally be in what they call Long Term Maintenance. During LTM chemo therapy is as followed:
Once a month appointments for IV drip of Methotrexate, Pentamadine & Vincristine.
Every three months he'll have a spinal tap and chemo injected into his spinal column.
Once a week takes oral Methotrexate.
Every night he takes a chemo drug called 6MP

For the first few months the oncologists want him in every two weeks for blood counts to make sure that the meds aren't making him too low or susceptible to infection but are at the correct levels to effectively kill any remaining cancer cells in his blood and bone marrow. This cycle lasts for the next 2.5 years. We are going to have a BIG party in June of 2013! We talked to our doctor about what we should expect after LTM in 2013. Chad and I thought that we would shake their hands and go in every year for an annual check up..... yeah right! Our doc mentioned she would continue exams and blood draws at least monthly for the following year to make sure that he doesn't relapse. It slowly wans to a visit and blood draws every three months, then six months, then EVENTUALLY every year. Relapse is common in the first few years following the end of LTM so they keep a close eye on the patients.

Charlie (& Daniel) have started back at school. Charlie is in Pre (Pre)-K and Daniel is in the infant room at Primrose school at Bear creek (More on Daniel a bit later). I am picking up some contract work, at about 30 hours a week from home and sometimes at the client. It's really flexible for the times when Charlie cannot go into school like this past Thursday. They had a flu shot clinic at his school and he shouldn't be exposed to the nasal vaccine for fear of contracting the virus. I'm also more available for freak fevers and infections that arise. See next post....

We are hopefully settling into our new normal routine. Kids at school, us at work, routine doctors appointments with the same treatments that don't change all of the time. Just in time for the Holidays :) Its strange to think that we have to do all of this through Kindergarten. Charlie can't even spend the night with friends or Nana without packing a medicine bag and thermometer.... His immunity is still compromised and he will get sick easier and more often, so we have that to look forward to. His hair is starting to come in, a little fuzz here and there, but I'm not sure if it will get back to normal in the next 2.5 years considering the drugs all have the hair loss side effect. We are making the most of it, just wait for the Halloween post.

Dressed Alike?

Don't think Dad meant to do this...

Pie Time

Charlie helping with the pie crust. Maybe the texture was unappealing.

We have an apple tree in our back yard that flowered and produced SO MANY apples this season that I decided to pick some out and make a pie. Charlie "helped" me peel and cut the apples with his safety scissors He then used the rolling pin, or his machine gun as he told me to roll out the dough. The look on his face was priceless. I think he has an issue with the texture maybe. I'll let you know how the pie turned out. If its good then I think we have enough apples to make 5+ pies!

Hair today gone tomorrow... Part two

Before
After

Daniel's hair was so bad and his scalp was covered in yellow-y cradle cap that was impossible to get rid of. So we buzzed him. He looks like a little ninja!

Daniel 3 months

Daniel 3 months

It's hard to believe that today marks the 12th week of life for our newest addition. Grandmommy, Charlie and I took Daniel to Penny's for yet another photo shoot. They are not the best bunch of pics, but they had us waiting for over 40 mins for the sitting. You just can't do that with little ones! He had great smiles before and after the photographer had her camera of course. I'll put together another album for our photos like I did last month and post those as well.

Grand Lake

This past weekend we joined our friends Gary and Deb at their cabin in Grand Lake. We drove up Friday after work and stayed through Sunday afternoon. Charlie and Daniel enjoyed toasting marshmallows out by the fire pit, a "hike" to a waterfall, and a cruise around the lake in Gary's pontoon boat. Mom and Dad enjoyed the adult company and the relaxing surroundings. Thanks Gary and Deb for your hospitality. I can't wait to see some of the pictures you took, but for now here are the few we snapped before the camera died.

Grand Lake

Cure Search Walk

The whole family took part in the Denver Cure Search Walk at Sloan's Lake this morning. I was there super early as a volunteer to help set up and Chad and the boys joined just before the walk kicked off. Charlie was honored with a medal for his bravery during his treatments and got to visit with fellow pediatric cancer survivors. This was the first year for the walk and hopefully next year we can form a team and try to raise money for the cause. This organization helps to fund the research study that Charlie is a part of. Chad and I both commented over lunch that it is difficult to participate in events like this because it brings those deeply buried emotions up to the surface. We tend to just deal with the day to day of this disease, but when you all gather together and hear the stories, good and bad, it can get pretty emotional.

Thank Goodness for Crazy Hats

A special thank you to Aunt Olivia and all of her friends. Olivia sent us a note the day after Charlie's hair started to fall out that we should be receiving hats from random people in the mail. The picture below shows Charlie in one of these fun hats from our postal friends. Thank you so much, we don't know many of you, but having hats makes Charlie feel special when he gets to choose what cool hat he gets to wear that day.

Sam I am

Charlie has become obsessed with Green Eggs and Ham. I noticed they were reading it at school a few weeks back so I grabbed if off of the shelf for a little night time reading. Now Charlie asks to read "Sam I am," ALL of the time. In the video he got tired of waiting for us to read it to him and started "reading" himself. It's a pretty long clip so it is hosted on you tube under angela@h00per.com for anyone interested you can get to it from your TV and iphone too.

Daniel on the Go

Daniel loves being in the jogger/bike stroller!

Nurse Dad - Delayed Intensification Part 2

Wednesday (9/8/10) started the second half of Delayed Intensification. Charlie had four different types of chemo over the course of 7 hours in clinic. One was in his spine during a lumbar puncture, and three were through his IV port. One of the medicines can be very harmful to his bladder so they pumped hours worth of IV fluid through him to flush it out without damage. We also have to administer chemo through his port at home nightly. In one of the pictures above you can see Chad giving Charlie his first dose under the watchful eye of Nurse Sally. It was a very long day, but both boys were troopers. It helped that Granddan and Garney were there for the first part of the day before heading home. This part takes 4 weeks, but then we should be on our way to Maintenance.

Head Shaving Neighbors

When Charlie was diagnosed many of the famous "Colgate Place" neighborhood men offered to have a head shaving party in solidarity. On Labor Day we gathered in the front of the Berscheid's house and buzzed Dave AND Andrew's head! Jarrett, John and Daddy had already used the clippers for their new (and everyday) dos. Take a look at Andrew's before and after shots!

Head shaving neighbors

Practice Tubies

We've posted about Charlie's central IV line or mediport that was put in for his chemo. Everytime we go to the clinic he has to be "accessed" through this port. This is usually a scary experience for him so we decided to "practice" having "tubies" accessed every night to make it a normal event. Hopefully our work will pay off and Charlie will be more calm in clinic the next time he has to do it for real. This video below shows Chad and Charlie going through the routine. Hopefully our nurses will see this and witness the progress.

Train Museum

Train Museum

The Colorado Train Museum is heaven to 3yr old boys and 59 year old men. We took Charlie, Daniel, Garney and Granddan to this mecca on Saturday. Charlie had a great time climbing on train platforms, turning knobs and watching the model train run. Granddan had a great time taking pictures, talking about trains and watching the model train run. It was a great place to go, not too many children to catch germs from and we used our free passes that the Children's Hospital gave us a few weeks ago. We hope to get back to the museum before the end of the month for the Thomas the Tank Engine day. Now that would blow his little mind. I put together a few pictures in the album above, note that Daniel slept through just about the whole trip.

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.

Daniel One Month

We had pictures taken at Penny's once a month for the first year of Charlie's life and it is fun to look back and see how he changed. Here is the beginning of that tradition with Daniel. Neither one of our children wanted to cooperate for the sitting, but thats how it goes. We ordered a few pics and will distribute to the grandparents of course. Click on the picture above to get to the picassa album with the decent shots.

The Baby Snatcher

Every now and then my fantastic neighbors send me a message that they would like to hold Daniel or snatch him for a few hours. Abby just took this picture on Thursday when she kidnapped Daniel and let me go grab groceries. What a sweet smile on the little guy's face. Her mom mentioned that there is a video of him dancing to High School musical songs floating out there some where... We'll pull that up when he is 16.

Bang!

I see lots of shoot-em-up games in our house in the coming years.

Pink Eye

This isnt the best picture of Charlie's goopy pink eye, but I think it accurately coveys Mom's reaction after the doctors confirmed the dx. I took Charlie up to the hospital today after nap time just to be sure. If they even hear the phrase pink eye they do not mess around! When we got upstairs the lady doing the health checks before you get in shuttled us off to the side and called the nurses. We took the super secret side entrance and were quickly ushered into a special room for the 10 min exam. Charlie is now on antibiotic eyedrops for the next few days which puts a damper on Grandmommy and Grandaddy's visit this weekend. We'll have to be extra diligent hand washers and hope the infection does not spread to his ears and cause a fever. His ANC was pretty high last week so I think we will be fine.

Baby Batman

Daniel and Batman hanging out on the hospital bed at Childrens during Charlie's last chemo session. We sent this on to Uncle Brad immediately. It also spurred mom on to look for the other three "Brave Buddies," in the toy line. Robin, Green Lantern and Aquaman will arrive from Ebay soon for Danny to cuddle up to.

Last Day of Interim Maintenance

One of Charlie's favorite things to do at clinic is stand on the window sills and look out of his perch on the 7th floor at all of the construction across the street and the cars passing by. Chad snapped the picture after his last chemo treatment during the Interim Maintenance Phase. His ANC was fantastic so he was given 180mg of Methotrexate up from 30mg when we started. The visit was more of a learning experience for Charlie. We worked with Tommi, the Child Life Specialist to help prepare him for having his port accessed. Tommi uses a doll to step through the process with Charlie in hopes that it will calm his fears when it is his turn. We are going to try a few different things moving forward with his port accesses. We ask him "Are you scared? or does it Hurt?" this way he can get over the scariness and become a brave guy. The other things we are going to do is only have Nurse Sally access his port for some continuity, give him warning by counting to three and giving him choices like "Do you want to sit in Mommy's lap or Daddy's?" to give him a little more control over what is happening to him. With practice, I think these techniques and working with Tommi will help make port accesses less stressful for him.

For now we have a 10 day break from treatments and begin the highly anticipated Delayed Intensification Phase. Charlie will go back to weekly visits (if not more) and will have a few new medicines added to the list. I'll post more about this next phase after the first treatment on August 2nd.