Parenting a 2 Year Old with Cancer

First rule is that all rules are out the window.

Tantrums: If you want to throw a tantrum, go right ahead, seems perfectly appropriate for the situation. I've been throwing some tantrums lately too.

Watching DVDs: Skies the limit. Always being hooked up to some kind of restraining tube or pole along with exhausted parents have made Elmo, Bob and Larry and the Wiggles members of our family.

Meal Time: Breakfast today consisted of cheetos, a waffle, a fruit juice popsicle, cheese, turkey, chocolate milk and juice. Each had about one bite or sip taken. We are desperately trying to get him to eat so anything goes when you get your nutrition from a tube.

Home

We made it home. Jordan is doing well and feeling much better. He has to go in for an appointment tomorrow, then a procedure under anesthesia on Tuesday, then chemo Thursday, Friday, Saturday, Sunday, and Monday, and then maybe a break. We'll hope.

Tuesday

Things are resolving and Jordan is doing much better. He wants to run around in the halls but ends up in a mess of tubes. They will probably send us out today or tomorrow. We will have to come back for another procedure in a few days and then chemo will likely start again next week. I guess one good thing is now we think it wasn't the chemo making him throw up so much. So, this time hopefullly Jordan won't feel so yucky and it won't require 4 loads of laundry a day.

Saturday

Well, we are here until at least Tuesday. After such major surgeries there are often complications, but Jordan has had more than his share. They found some blockage in one of his kidneys and there is also some kind of infection they think in his urinary tract. The doctor wants to make absolutely sure everything is under control before we are sent home and that involves all the big wig doctors conferring, and of course they are not all here till Tuesday. We are appreciative of the excellent care we get but are tired of this place. Brent and I had to laugh when the girl in the ER asked us if we needed a map of the hospital.

here again

After two weeks of Jordan throwing up and not knowing exactly why (except the thought that things were associated to chemo), we made a 5:00am trip to the ER. From more scans/xrays we learned that one of Jordan's kidney's is not working and have been here all day. Jordan is just coming out of an evening surgical procedure to help correct the problem. The hopeful plan is that things get resolved in the next couple of days and we won't have to stick around here for too long. Thanks again for keeping us on your prayer list...love the busbys

1st Round Completed

Jordan finished his first round of the new chemo. They said this drug usually doesn't cause nausea, but it did for him. He seems to feel fine in between it all, but it has been a lot of sleepless nights again for Brent and I. While he has recovered well from the surgery, I can't say things are a whole lot easier yet. He finally decided he wanted to eat tonight and had some chicken and icecream. He actually wrestled Sitara for her bowl when we wouldn't give him more, but eventually threw it all up. It is very frustrating. The feeding tube drives us crazy. The pump is always beeping about something. He does wear the backpack now, but we are still very anxious be to rid of the whole system. It is slowly getting better, but Brent and I are running on empty.

BIG "Mo"

That's abrreviated for BIG "Momentum". We are gaining strength and momentum for the final 6 months of chemo. In the last few days we've seen a new and improved Jordan. His heart and determination have been relentless. He is even more passionate about life and bringing the "spunk" to the party. A couple of nights ago itunes was playing a watoto children's choir song (cast your burden...and be lifted higher, higher). Without prompt or cue, all four of the children were singing along with the music while holding hands doing a circle dance together. The sheer joy and exhileration of being home together and knowing that Jordan was on the mend, back to working on his dance moves; it had inspired them to a special display of sibling unity. I happened to walk in on it and quickly snapped a picture of the moment as a reminder of how the LORD can turn bad to good and answer the many prayers spoken for healing. Present prayer concern is for the new "insurance" chemo round starting Monday.
"Cast your burden on the LORD and He shall sustain you" Psalm 55:22

Update

We've been home for a week now. Jordan is doing well and is mostly back to himself walking around and getting into everything. It has been difficult for Brent and I as he still requires a lot of nursing care and Brent really got no time to recover himself. Not a lot of sleeping or relaxation going on over here. Thursday the iv antibiotics are over and that will make things a lot easier. We are really hoping to get him eating again more normally so he can get rid of the feeding tube. As of now we have to follow him everywhere with the backpack and that is a huge pain in the neck. He starts a different chemo drug on Monday. It will be Monday - Friday for about 1-2 hours each day in the outpatient clinic. We will do that every 3 weeks for about 6 months and are looking forward to then being done with treatment.