Things have been a little crazy, trying to keep up with everybody's "stuff" around here...as Pat posted in January, Sarah had her next to last chemo on her 14th birthday. We had to wait until February 4th until we could celebrate with a party, so we had the "done with chemo, turned 14" party at the church. Between 90 and 100 people came, so thanks everybody for helping Sarah to feel such a part of the community, and get loved on a bit. It was a LOT of fun for us.
That following Thursday, the 8th, we went to the Children's Cancer Association's 3900 square foot "cabin" for a 4 day get away. Some wonderful friends came over on Friday, and we played pool, air hockey, games, ate good food, and kept saying "WOW" every time we went in another room and looked at the incredible art, beautiful decor, and provisions of every kind. (Things like a huge gas fireplace in the master bedroom, leather couches in the main room, wonderfully thought out kitchen area, etc. etc.) We took the boat onto the lake, roasted hot dogs on the private beach, and just spent time together. If anyone has a child with a life threatening illness, it's a great place to go. There are no doctors, nurses, needles, scans, appointments to keep, or toxic drugs there. It could have been a yurt and been a delight, but the CCA has done an incredible job of spoiling the folks who have to endure these treatments.
Next, on the 24th, the owner of Great Harvest Bread here in town spurred on by our friend Susan Heinz, put on an incredibly fun fundraiser for our family. We got to invite a few friends to work the bakery with us, and along with Travis, the owner, two of his young boys, and his awesome staff, we made bread and treats and got to work the counter all day. They sold out of all bread at 2:34 PM, and called folks to claim their reserved items, or they might run out the door. Every muffin and cheesestick was gone, and there were some lonely shelves at the end of the day. Susan has been working hard to arrange for a trip away for our family, and we were able to easily finish covering the final arrangements for this, plus put some into the Medical Account to cover more trips to OHSU and other appointments. Oh boy oh boy!! Thank you to all those who contributed, participated, and who have silently continued to do so over the last two plus years. You are incredibly faithful.
On February 27th, we went to OHSU for Sarah's scans. She was to do a PET, a CT scan and a chest x-ray. Evidently the PET and X-ray were done, but somehow the CT scan got lost in the shuffle. The doctor isn't sure why this didn't get done. This coming Monday we'll go up again and redo it. The preliminary tests look ok, but we still need the CT scan to determine if the mediastinal tumor mass has shrunk the required 70%, and the CT scan is the only one that accurately measures the exact size of the mass. Rats.
I am still off of chemo. We spoke with the insurance company, and they've ok'd a six month time frame for me to transfer to OHSU for my care. It's taken a long time to organize all this! Now Dr. Chui's office will call to tell us when we can either go up there for scans, or get them down here. It's been so great being off chemo. My body has done some serious detoxifying, and I've been reliving a lot of 24-36 hour chemo reactions as stuff flushes out. Very sore toenails, tender scalp, major nausea, bleeding gums--it's weird, because I was so intent on getting the cancer to go away that I tried to not pay too much attention to the side effects. Now as I go through each one I think "Oh yeah-I remember this!" At least my fingernails and the skin on my feet didn't fall off. After each detox "symptom" I feel a higher level of well-being. The plan as we spoke with the OHSU med. onc. at our last visit, was that if things were to remain stable I could decide whether to stay off of chemo a little longer. If the cancer has grown, then we'd need to decide what cocktail to try next. Still hoping for a miracle-this is the longest I've been off of chemo since I started this-the last of November was the last infusion. I'm still on IVC, so I'm not escaping needles and long appointments, but at least I feel good!!
The rest of the family is doing well. Nicole's still working M-F in Albany, Valerie has about 12 things going at once all the time as well as stepping in to care for the young ones during appointments, the boys are each on their own basketball team and Dan has Saturday Speech camp, Sarah is picking up activities as she can-primarily beating up her father since she got her PICC line out. Wrestling has become a way of life!! She is due to get a Nikon D-80 camera from the Make-A-Wish Foundation very soon, so she's "self-studied" at probably a college level photography class for the last couple of months, and is interested in it as an art form, a potential business, and just for a lot of fun. She and I are at opposite poles with techie stuff. It's nice to have some people around who can get me out of my jams on the computer. Pat's hanging in there with all of us, still going to every appointment (except the IVC), and working long hours to keep up with his job, which he still likes a lot.
So---we're all still enjoying being alive, and there have been no crisis situations as of late!! Yahoo! Thanks, God!
Thank you all again, and many blessings to all of you!!
Jeanne
No comments:
Post a Comment