Tuesday, January 5, 2010

Chemo Maintenance-1st day

Connor actually woke up excited to go to the Hospital yesterday. We knew it was going to be a busy day but didn't know exactly what to expect for our first overnight Chemo stay. Here is the run down:

9:oo am Connor had a bowl of cereal.

9:30am We left the house (it was pouring rain) Connor was still hungry for more breakfast (steroid frenzy) so we picked him up some breakfast to go.

10:15 We arrived at the clinic for our 10:30 apt. It was packed. Connor's weight went up about 3 lbs. since our last visit. We read magazines, played Rock-paper-scissors, and crazy Eights.
10:45 Connor got his port accessed, and his blood drawn.

11:45 We met one of the Oncologists, He went over Connor's blood results (ANC was over 6,000, Excellent!). The Doctor talked to us about Connor's MRI results. Although there is no evidence of recurrence (Excellent News), the damage to his Cerebellum from the radiation can be observed (this was to be expected), his Cerebellum is smaller. The damage that has been done to his brain (from the treatments) has also caused Ataxia. He has been experiencing increased: Unsteadiness, unsteady gait, uncoordinated eye movements, and some clumsy speech. We're hoping to see some improvement from strengthening his core muscles, and enrolling him in weekly Physical, Occupational, Speech and Swim Therapy.

12:45 After a thorough exam we headed over to the Children's Floor to check in for our overnight stay. Connor ate some lunch (Steroid frenzy again).
1:00 We played some games, went to the "Starlight Lounge" playroom
2:30 Connor started his Chemo Therapy. A Dose of Vincristine, Hydration, and Zophran (Anti Nausea Medicine).
4:00 Chemo Pal Nick came to play. He went with Connor to the Starlight Lounge to paint a piggy bank. We all played UNO attack.
5:00 Dinner. These steroids will make a little man do crazy things. He ate the "Mystery Meat" and Mashed potatoes. Amazing.
6:00pm More Chemo- 6 hours of Cisplatin. A bedtime Movie. lots of peeing.
9:45pm: Connor finally fell asleep. lots of peeing.
12 am -5am Hydration- waking up to Pee every 2 hours.
5 am 1 Dose of Nausea. Benadryl made him feel better.
5 am- Current: Hydration/Peeing every 2 hours/Breakfast/and now he's off to the Starlight lounge to play video games with Daddy.

We'll be here until 6 pm tonight, just receiving fluids. We have a follow up with his Radiologist at 1pm while we are here, and hopefully some Therapy squeezed in somewhere.

Being here definitely brings back memories of our very first stay (especially when I can see the PICU from our Window) but it also is a reminder of how far Connor has come. Even Connor acknowledged his progress when breakfast was delivered (The meals don't change around here either lol). "Mom, do you remember when we were here before and I couldn't feed myself the cereal?", Yes I do. I remember not knowing if he would be able to walk, dress himself and do a number of other things that I may have taken for granted prior to this. But he can.

Something special about yesterday: The strength my son gives me. How he continually amazes me. How brave he is.

Something funny Connor said yesterday: The nurse asked Connor if his bandages make him break out. "No", he said "I won't break out, I have to stay overnight".

Sunday, January 3, 2010


We took the family to OMSI on Saturday. Connor had a blast. He enjoyed all of the exhibits including the new T-Rex exhibit. He told grandpa, "I'm an explorer, I'm going to find dinosaur bones one day".



After OMSI we took the family to Voodoo donuts but the line was a little too long (and slow moving) so wCheck Spellinge will try again another time.






Connor is an eating machine since he started his steroid. He has a new found fascination with Crab and asks every morning if we can go crabbing.

Here is a photo from the Chocolate cake fascination. We are happy he's starting to put on a little more weight before starting Chemo.





The snowman that Grandpa made finally melted on Saturday, he hung on for a long time.


Last night we had a nice evening with friends and family, Cioppino, and a fun game of apples to apples.

We will be checking in for Connor's Chemo this morning. He will have 6 hours of Chemo followed by 24 hours of hydration. These rounds of chemo can make him nauseous so we will need to keep him on his anti-nausea medicine.