Saturday, September 1, 2007

September 1st, 2007

Josh & Aiden (Sept. 2004)

Josh & Ethan (Feb. 2006)

Hi! I know all of you have been checking for updates on Josh’s surgery and I’m so sorry that it’s taken this long to get it up here! The surgery was Thursday morning and ever since then the information we’ve been getting is in bits and pieces and I’m having a hard sitting down and figuring out how to write it all up.!

They were able to remove 75% (30 lbs.) of the tumors and they immediately started the hypothermic and IV chemo. Unfortunately it has spread to his liver. When they asked the Dr. about a liver transplant they were told it wouldn’t work because it was at the blood supply. We have to hope and pray that the chemo will shrink the tumors that they weren’t able to remove. Josh’s Dr. has sent samples to a lab to do more research on and they have put him on a list to try a new investigational drug. He is recovering in ICU and was doing very well breathing on his own so he didn’t need to be on a ventilator. Yesterday they removed his drainage tube and they gave him some insulin because his blood sugar was low. Today his blood sugar was ok. They still won’t let him eat because his bowels aren’t moving yet and they’re afraid of him getting sick and pulling his stitches. Right now the IV fluids they’re giving him to hydrate him aren’t going where there supposed to (into his bloodstream) it went into his body cavity and it’s making his lower body swell. They’re giving him medicine to get the fluids out and help his blood stream absorb it instead.

He should be able to come home in 10-15 days and then he will continue the IV chemo at UMC in Tucson. Rosie was going to call that Dr. yesterday, but I haven’t heard what she found out. We are still debating on how we are going to get him home. The Dr. told him he couldn’t fly for 3 weeks after the surgery, so we are trying to figure out the best and most comfortable way to get him back here. The Dr. says it shouldn’t be a problem for him to come back in Dad’s semi, but a lot of us are concerned about him having to get up into the truck. Mom and Jeff are talking about driving out next weekend either in Grandma’s van or a rented RV. Another option is that Dad is trying to get a load home so he can drop off the truck and he and mom and can drive out there together and get him. Dad is also looking into a Greyhound bus that has been converted into something like an RV that is used to get truck drivers home if they get sick while they are on the road. Right now we’re just trying to figure out what our options are! We can’t make any real decisions until we know more about when Josh is getting released and how he’s going to feel!

On behalf of my entire family, I would like to thank the staff at Town and Country Elementary School (where Mom works) for such a wonderfully generous donation to help us with expenses! We cannot tell you enough how much we appreciate it and how overwhelmed we are with your generosity! We have not decided exactly how to use it but we think it will go towards getting Josh home! Thank you also for your kind words and prayers!

Although we didn’t get the results we were hoping for, we’re still praying for a miracle. Please pray that the chemo will shrink the tumors and that he will get to come home very soon!

1 comment:

Kalimac said...

Thank you for updating. We have Josh in our prayers.

Just so your family is aware of this . . it is very common for DSRCT patients to need two surgeries to remove all the tumors.
My son first had chemotherapy and a debulking surgery 9 months before he had the second surgery with the hypertheric chemoperfusion. He also needed a third thoracic surgery. So, this is not uncommon.

Hope Josh is starting to feel better by now. My son rebounded in about 8 days and was allowed to fly home after a 10 day period (from Pittsburgh to Maine about a one hour flight). Not sure why Josh's doctor doesn't want him to fly?

Stay strong.