Thanks so much for your prayers, y’all!
I wrote to one of the moderators a few days ago to see if I could post a link to Aden’s website (his mom is keeping us all up to date with CaringBridge) but I never got a response. If any of you can let me know if this is allowed, I will post the link. In the meantime, here is the latest update from Aden’s mom, Caroline…
**Aden had his external bladder bag removed yesterday. It was a rough morning as he was unable to eat or drink until about 2 when the surgery took place. But he was a trooper, very patient, and didn’t complain.
He is a very tough little boy. He refuses to lay down for anesthesia, and sits up and talks until the very last second. Then when he wakes up he immediately says he wants to sit up, doesn’t want a blanket, and wants to eat. And he always asks me immediately what was done. Yesterday just a few seconds after being woken up he was asking me if his bag was off, wanting to sit up, throwing off the blankets they were trying to give him, and asking for crackers and juice. I have to really be observant and guess when he needs pain medication, because he refuses to tell me when he hurts. He is such a tough little boy and I am sooo very proud of him and glad he’s mine!
The bag was removed successfully with no complications. The stint in his ureter will probably be replaced twice during his chemo (over the course of 6 months) and then ultimately they will take it out, reconstruct the ureter and he’ll be fine.
His healthy kidney is working great and he is eating and drinking fine.
He also started chemo yesterday at 5:30. They did 2 quick pushes of 2 chemo drugs, it only took about 10 minutes. Aden is lethargic today, but other than that he has no signs of being sick. He is eating and drinking just fine and is not nauseous. They will observe him through the weekend and we expect to go home on Monday.
The plan is to come in once a week, outpatient, for his chemo, for 6 weeks. After 6 weeks they will scan him again to see how much the tumors have shrunk. At that point the plan is to surgically remove the large tumor, radiate the area, and spot radiate his lungs only if there are still tumors there. Then he will need about 2 weeks to recover from surgery, then chemo will start again to finish out the 6 months. Again, my hope is that by his birthday, August 28, he’ll be healed.
I also spoke to a woman on the phone today named Tracy whose daughter is now 6, and was diagnosed at age 4 with exactly the same type of tumor that Aden has, also a stage 4 wilms tumor. In fact, everything is almost identical - left kidney tumor, large enough so that almost no recognizable kidney is left, metastasized to the lungs, same exact treatment regiment. When she came in for her 6 week scan the tumors had shrunk a surprising amount. At the end of 6 months the cancer was completely gone. She also did not get sick very much with the chemo. She did lose her hair, but other than that and a little lethargy, she handled it well. Of course every child is different, but I certainly hope we will be as lucky.
I am in surprisingly good spirits, other than being really tired. At first the news of all of this was devastating, but like everything else in life, it’s all relative. Since being here I have seen other children with cancers much worse than his, and heard stories of other children not as lucky. Given everything, I feel very positive right now, and grateful that his is so treatable. Maybe I should knock on wood, I know there’s always that 10% that felt just like I do and it didn’t work out for one reason or another, but I try not to dwell on that, even though I know it’s a possibility.
I am also so grateful for our support network. There are children up here who are sometimes alone because they only have one parent, or parents have to go to work, or they don’t have extended family. Aden is so lucky to have the wide network of friends and family that he has, and I am lucky to to have all of you to draw on when I need a break, or a glass of wine
so that I can stay strong for Aden.
Caroline **
