Okay, I'm not even going to try to pretend or fool myself into thinking that I can catch up on everything that's been happening since my last post because it's been so long and so much has been happening. I will say though, that the vast majority of it is positive! [I do have another post that I worked on a few weeks ago, but I didn't finish it or publish it. It was quite long and I still might publish it; retroactively, so to speak, just to have it on the blog as a matter of record for our family.]
Ryan is doing GREAT!!!! He continues to get stronger and stronger every day, and his smile, his energy, his sheer beauty amaze me. ♥ We have super exciting news to share: his Hickman catheter will be surgically removed this coming Monday (TOMORROW: July 11th)!!! It will be nearly one year to the exact day that he was diagnosed with relapsed high risk leukemia (relapse dx = 7/13/10). It will also be nearly 4.5 years after his initial diagnosis. Ryan has had some sort of permanent venous access device (AKA "central venous catheter") implanted in him for the past 4.5 years. He had his Port-A-Cath implanted near his right shoulder on 3/5/07, two days after he was initially diagnosed and it stayed in him until sometime last fall. He had it removed and had his Hickman implanted right before his transplant last year. Both devices have catheters that are tunnelled into one of his main arteries in his chest in order to better deliver medicine, transfusions, etc., and also to take blood samples for lab analysis.
Diagram of Port-A-Cath:
Diagram of Hickman:
He needed the Hickman for the transplant because they needed more than one line in order to be able to deliver chemotherapy and/or other meds and/or blood transfusions and/or nutrition intravenously at the same time. The Port-A-Cath just wasn't sufficient with just one line. The Port-A-Cath, however, was much more convenient than the Hickman because it was under his skin and he was able to swim and bathe with it in him. In contrast, the Hickman has been a pain in the ass because the tubes basically come out of his chest and need specialized care to prevent infection. He actually had an infection back in April, when he was hospitalized for 2 weeks and required a blood transfusion. It was a staph infection in his blood and it was mostly likely caused by germs in the Hickman. Anyhow, with the Hickman in place, Ryan basically can't swim, take a bath or be immersed in water in any way. He can shower (after we place his tubes in a baggie and carefully tape them to shield them from water) or take baths with just a very shallow amount of water in the tub. His dressing also has to be changed once per week and that's about how often he's been able to bathe. ...A six year old boy needs to be able to bathe more often in the midst of summer, especially if he is an active little boy like Ryan. So now that the Hickman is coming out, Ryan will be able to take baths with lots of water in the tub, and he will be able to do so everyday if necessary, and he will also be able to go swimming in a pool and to play carelessly in the sand at the beach and in the ocean. We are so ridiculously overjoyed about this!!! Once his Hickman comes out, it will take around a couple of weeks for the small incision to completely heal before he can dunk himself in water again. Personally, I think he's going to turn into a fish once the incision heals.
Here are some pictures that we took the other night, when Ryan took a bath and we changed the caps on his tubes, changed the bandage, cleaned the incision site, changed his biopatch, and flushed his tubes for hopefully (KNOCKING ON WOOD!!!) the last time ever!
[Above left: Ryan & his Hickman line. Hopefully getting the bandage changed for the last time ever. The scar above his right breast is from where his Port-A-Cath used to be implanted. Above right: Ryan and his shark, Bruce, checking out their tubies.]
[Above: Ryan & his shark, Bruce, showing their pearly whites & their Hickman catheter "tubies."]
[Above: Ryan's bandage, caps and biopatch are changed following his bath. Now it's time for Daddy to flush his tubes with Heparin and saline solution. Ryan is watching Phineas and Ferb in order to remain patient and somewhat distracted during the whole process. The trophies in the background are from his sweet friends, Makayla and Dillon, who won them (they are both BMX racing champions) and gave them to Ryan. Dillon told Ryan that they won the trophies just for him! Ryan is very proud of the trophies.]
So yeah, we're moving onward. Upward and onward after last year's descent into hell. We are super grateful and happy for Ryan's health, that we are able to really enjoy life and the company of our dear friends and family once again without all the stringent rules and restrictions that were imposed on us last year and the past few years.
I can hardly wait til those tubes are out of him and his incision heals. We have lots of swimming to do!!!!
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