It's 10:-7 on Tuesday night, I am drug down and wore out. It has been a long week for the whole family and its getting longer and longer.
On Sunday June 12th we packed up after church and headed to Indy. Keegan had to be to surgery area by 5:45 am. So we drove up, got our cheap rate at the Candlewood and relaxed. Bright and early Monday morning we ventured to our home away from home, Riley Hospital for Children. We signed in and didn't have to wait long until the anthologist came in, we signed off and we talked with some neuro people. Then it wasn't too long after that that the nurse came and took my baby.
The surgery being performed was having his shunt replaced and a new port put in. Dr. Ackerman went in first. She removed his old shunt, you may ask why was it removed? Well, per the protocol for the 3f8 study at MSKCC you need to be able to shut the shunt off so the radioactive antibodies have time to attack the cancer cells in his brain, spine and CSF. Then the shunt will be turned back on and the brain pressure will stable out and return to normal.
After the old shunt was replaced with the new magnetic shunt he had a porter cath placed. I am already in love with this catheter and wonder why in the H-e-double hockey sticks they didn't choose this from the beginning. ::returns from 5 minute google search for a picture of the cath, with no luck:: Anyway, when the cath is not accessed (needle in it) it just looks like what your knuckle looks like when you ball up your fist. When it is unaccessed he can get wet and be a normal kid-LOVE!
After both surgeries were complete we were ushered to the all to familiar recovery room where he was positioned very oddly on some pillows and had just started to wake up. Ry and I were there gently reassuring him that everything was okay. We waited about 30 minutes and moved up to the Hem/Onc floor.
The first night or two we were in a room with a little boy we will call J. J took a liking to Keegan although I don't think that Keegan ever knew he was around but I sure did, he was a loud little 10 year old but happy and otherwise healthy (besides what he was in there for). He and Kee became buddies and when we moved to our private room on Tuesday., J would come by and visit on his way to and from the playroom.
Nothing too taxing happened while impatient Kee got Cyclophosphamide over 30 minutes Topotecan also over 30 minutes. That started on Tuesday Morning after a couple of hours of hydration. In the cancer world especially with some drugs you have to have certain readings in your urine before they can safely give you the drug and since the Cyclophosphamide can do a whopper on your bladder they are very careful with this. They also pretreat with Mesna and then treated again 3 hours after chemo is done with Mesna.
While we were there we had our favorite nurses and some new ones too. We misses our Dear Julie S. who we will be seeing very soon. We had LOTS of friends stop by and say hi! The comment I heard most often was "look how big he has gotten" and "look at all that hair".
We were discharged Saturday and had to start GCSF on Sunday. I hate G, it makes Kee hurt all over and takes about an hour or so out of our day where Kee is hooked up to the pump and we cant really go anywhere. Tis life, this too shall pass.
This week has been semi uneventful for Keegan but I have been busy as a little Bee getting ready for our big Rummage and baked Sale. I have been collecting donated Items for weeks now, I have TONS to go through and set up Friday night, wish me luck, but its all for the better good. I have a ton of people helping me and without them I dont' think this would be possible. We were on our local mid day show yesterday advertising our story and our rummage sale-Keegan cried through the entire thing to the point that I had to take him off my lap and sit him between him and my friend Susan so my Mic was not dominated by cries. (so sad). Tomorrow our local paper is coming to the house to take pics of Kee and interview me about his story and the rummage sale, that should run in the paper on Friday.
I do need to ask for a few prayers. First (selfishly) I pray that everything falls together with MSKCC. I talked with the Social Worker yesterday, she is putting our reservation into the Ronald McDonald house and it sounds so nice! Secondly a little friend of ours that we shared a bathroom with at Riley named Talon needs lots of prayers. He is a PNET patient and his cancer has returned. We share the same Oncologist come to find out through his caring bridge page but they are searching for options in a bleak situation, so please lift them up in prayer. I also pray that Keeg's will have minimal side effects from this last round of chemo and that our vacay to FL in a mere 3 weeks shall be unaffected :)
I would post some pics (cause we had to shave little Kee's head due to this awful cement stuff they put in his gorgeous hair to keep the bacteria away from the new incisions) Maybe once I get them watermarked I can come back and add to this post. Blood draw from home tomorrow, praying we are all good with platelets and blood and will not need to make an Indy trip........
Thanks for the prayers keep 'em comin!