Tue, 06 Apr 2004

Paradox

Howdy-doody.

Hey there. This is a rough email to write. Been a crazy few weeks around here and very busy, emotional couple of days. Jade and I went on a short 3-day cruise together in the middle of March and then left two days later for a week (with Garrett) in Houston, TX to see Jade's sister and our friends for a week.

We returned late Weds/early Thurs (last week) and Jade had his CT scan on Friday the 2nd of April. We had results early the next morning on Sat. The original tumor they saw a month ago has tripled in size and there are 6 to 7 more tumors visible. We were pretty sad on Saturday. Sunday evening we had a party which was a fun diversion with our family members and a couple neighbors for Garrett since he turned 2 the end of March (Garrett also got his "big boy bed" over the wknd and LOVES it - - I'm realizing I have an independent toddler and not a baby anymore!) Monday (yesterday) we spent four hours at the oncologist's office and were fairly discouraged afterwards last night.

Our oncologist was very honest with us; it's not a good sign at how fast and aggressively the tumors are growing. There is pressure on Jade's liver and spleen from the tumors which shows up as "thickening" on the CT scan. He had about four days in TX with intense pain and now always has at least moderate discomfort, so we anticipated having pretty bleak news with this CT scan.

Our oncologist is not advocating for surgery right away to debulk the tumors like we did last year. He's concerned it could weaken Jade and we wouldn't be able to get ahead or even keep up with the tumors by cutting them out. We could do this down the road however. We did review two milder forms of chemo which would be given once a week. They do have some side effects but giving them weekly rather than five days in a row would lessen the negative reactions. We discussed doing the aggressive chemo again that we did last year. Our oncologist stated we can but A.) It didn't work last year and B.) If we're talking about a finite amount of time, lesser side effects would give Jade a higher quality of life. (Just for the record, I loathe that phrase - - "quality of life.") As we discussed how this disease could progress and take Jade's life it became rather horrific. With where his tumors are situated in his middle to lower abdomen, they would cause multiple blockages. So much so they wouldn't be able to even do a colostomy. If we chose to not give Jade any fluids or nutrition he would be given morphine and adtivan (anti-nausea) to make him comfortable. There are still stomach acids and juices which need to be "processed" so they are vomitted up. They would put a tube in his nose down to his stomach or a "folley" directly into his stomach to suction out the liquid rather than have it thrown up. Once the blockages became this bad we'd be hoping it would last days rather than weeks.

Sigh. Yes, there have been lots of tears the past few days here.

For the last month we have been working with our BMT team and our oncologist to send Jade's records to MD Anderson in Houston, TX for a consultation. While they are not necessarily specialists with DSRCT they are experts with sarcomas. We couldn't get it worked out to coincide with our March trip down there but it should come together within the next couple weeks. We are FedExing the pathology slides today and will hand carry the remaining scan films with us. Our BMT team and oncologist are very anxious to hear their recommendation, as are we.

It feels like I'm living in a paradox. Living in the middle of a nightmare or tornado with moments of peace. It's wonderful and comforting to have Easter this wknd and the hope of spring all around us. Jade and I don't believe God has forgotten about us or is punishing us; we just don't know completely why we're going through this. We are very aware of the blessings and opportunities He continues to give us through this process.

We are not hopeless. We are still trying to live with a foot in both worlds. Preparing for the worst yet preserving hope. We know what we want. We're just trying to figure out what God wants. It's in His hands and we're trying to have renewed faith and trust in Him.

Thank you for your kindness, faith and prayers. We are so lucky to have you as friends and family members. I know this was a pretty graphic and blunt update but i don't know how to be other than honest. We don't seem to sugar coat things much in this house. Thank you for your courage to stand with us this past year. We are grateful for your strength. We'll keep you posted as things come together with MD Anderson and what the next step is. Take care and if there's no updates before this wknd.......................Happy Easter.

Much love and gratitude...........................Tanya and co.