Tuesday, February 26, 2008

Radiation Finished!

Going in for the last day

In the wake up room

Pictures from the River on Sunday

Joseph finished today! We met with all our doctors one last time and they got us squared away to leave. First we met with our radiation oncologist, then he had his last radiation treatment, and finally he was checked out by the neuro-oncologists and he's done. Everyone was really happy with his overall condition; the only minor concern was some redness inside his ears, which they gave us some drops for. Right when we arrived, the sweet lady at the patient registration who signs us in for the day had a present waiting for him from his favorite place, Target. He got to pick from a selection of thomas the tank engine trains. She said she didn't know which ones to get and so she let him pick one out. He was so excited. He also got balloons and more presents from the radiation team. Everyone wanted to say goodbye to him. They have taken good care of him here and we are so thankful for a place like St. Judes.

We also have been taken care of here in Memphis. We can't thank Matt and Jennifer and WK enough for letting us live in their house and for Carol and Rick and Nancy for making it possible. It has been great living in the same city with my sister again, and she and her family will be sorely missed. Many thanks to those who have brought meals for us. We have had food just about every other day since we arrived and we received the last one tonight. We keep using the word overwhelming, and since my thesaurus is back in atlanta, I have to say that all the support we have received is truly overwhelming.

After the pictures of his last day are some pictures from our outing to the Mississipi River on Sunday with Jennifer, Matt, and WK. Joseph loves throwing things into water and the endless supply of driftwood provided plenty of ammunition.

Videos from the last day: waiting for the doctor, in the waiting room, and going back for the last treatment.

Thursday, February 21, 2008

Last days at Memphis

Eyeing a delicious cupcake

We've finally gotten word about when we'll be leaving. Joseph's last day of radiation is next Tuesday and on Wednesday he'll be flying back to Atlanta with Mommy. Daddy will be driving back with a near capacity packed van full of our belongings plus Christmas plus a birthday. Joseph has impressed everyone here with how well he is doing.

He will have MRIs every three months and blood work every month. His first MRI will be March 7, so we will be back in Memphis pretty soon. The blood work can be done in Atlanta. He will be taking his Tarceva for two years. So now all we have to do is wait and pray that the radiation and the drug stopped the growth, shrunk it, or miraculously took it all away.

Mimi is here now and will be returning to Nashville on Sunday with another carload full of stuff and Holly who will meet up with us in Atlanta sometime next week. So all those in Atlanta get ready. Joseph has asked for a party when he gets back; a pirate party to be exact. So dust off those eye patches and sharpen your swords all you little ones.
Joseph with his Mimi

Tuesday, February 19, 2008

Midnight Post

It's more like one in the morning and Joseph is back to waking up in the middle of the night for snacks and some TV. This is frustrating, and would be exasperating if he weren't totally happy and excited and funny. So I figured I would take a few videos since they were such a hit.

Today Joseph went to the zoo with cousin Bella-Claire and aunt Sarah Jane. As you can see by the pictures they brought a pair of Lightning McQueen pajamas which neither have taken off in a few days.

No news on this post, we are in the process of finding out exactly when we are done here. But since we won't be likely to post more videos at home due to dial-up here is a deluge of video.

Chasing seals

A three part interview with Joseph on why he is awake, his ever changing list of favorites and a very touching goodbye (warning: snot content)

Friday, February 15, 2008

A day at St. Jude's

Joe pressing the automatic door opener

Back with the nurses

Holly feeding Joe

When we first started at St. Jude's (feels like two years ago)Joe had a horrible time with every meeting and appointment and all the nurses and doctors assured us that within a few weeks, he would adjust and even enjoy coming. We scoffed at that idea knowing our little stubborn boy, but although it was more like six weeks he finally has adjusted and enjoys going to see his doctors and get his "picture taken" which is what he calls his radiation treatments. So today we decided to take a few pictures while we were there and some videos which I will hopefully be able to post. It makes life so much easier when he is cooperative and happy, so this is a great relief. Now he wants everyone to come with him to his appointments; earlier this week Nana came and today we met Jennifer and cousin Winnie Kate.

Joseph is eating great now that we switched to a different appetite stimulant and our doctors told us to stop counting calories which lets us stop force-feeding him. He and Gillian and I are so much happier now. I can honestly say that I have never looked at the nutrition facts on packaging as much as I have in the past week. I was shocked to see the amount of calories I consume when I eat a whole can of Pringles.

Thanks so much for continuing to pray for him and for us. Yesterday I was waiting with Joseph for radiation to start and a nurse was telling me that she didn't know how the parents got through something like this and that she could never do it. I said "neither could I." We cannot do this on our own; we need daily reliance on God's strength and his promises and we need constant encouragement and prayer from his body. Thank you all for continuing to suffer through this with us.

Monday, February 11, 2008

Some pictures from our fun weekend

Joe became a little fish this weekend...we all went swimming at Lynn and Matt's hotel. We also went to the zoo, which was amazing. The polar bear exhibit is really neat, and the kids enjoyed riding the tram (train) around at the end. Overall, Joseph was in a euphoric state all weekend and had a lot of fun with cousin Will. There were lots of smiles and running and playing and it was great to visit with family. Thanks for coming to brighten our weekend, Lynn and Matt and Will!
Joseph still has no appetite, but we were able to feed him his 1200 calories each day...so hopefully his weight will not have dropped and the doctors will be happy with his eating. They weigh him today so we will find out soon. We considered putting rocks in his pockets but decided against it. :) Please keep praying for him to get his appetite back soon. It is much nicer when he actually wants to eat. We might try another appetite stimulant since the current one is not working.
The first pictures are after a trip to the mall with Daddy, where Joseph discovered an appetite for "Mike 'n Ikes." It gave us an extra 190 cals for the day, so we were thrilled. I never thought I would be begging my child to eat ice cream and cookies!
**Added note: I just talked to Allen and Joe gained almost a kilo! Yay!! Thank you all for praying.

Friday, February 8, 2008

This week

Will, Joe, Holly a little blurry, but you can see the smiles

After wresling

Okay, so it's been a while since we've posted. Sorry. Last week I was out with the flu and Gillian, Jennifer, and Nana took care of everything. Then I passed some of my sickness on to both Holly and Joe. Everyone is pretty much better except for some coughing which occasionally makes Joseph throw up, so we need that to stop. We went to Nashville for Holly's birthday and saw our families and our friends the Slotkins from Atlanta came up to visit with us too. It was a little rough with Joe being sick (joseph and I had to miss the party) but it turned out to be a good weekend overall. Holly got a lot of presents and had a great time at her party. We left her with Mimi and Big Daddy for a few days but she is now back with us.

Joseph has about 2 weeks left of radiation after which I guess we get to go home. We have been so focused on getting through each day we realized that we haven't even asked when his last day is or started preparing to leave. The house here has been such a blessing and we are so thankful to Jennifer and Matt for letting us stay here. It has made this so much easier. Joe is doing well with his radiation, but this week the doctors were concerned with his weight loss. He had ballooned so much after two months of steroids that we weren't really concerened with his loss of appetite. But now they say that he really needs to maintain his weight. This has added another level of stress because we basically have to force feed him since he has no appetite. And since he can't eat all morning and an hour after his chemo, we have about 6-7 hours a day to shovel in 1200 calories. If he doesn't keep his weight next week then they're talking about putting in a feeding tube which I don't think he would tolerate. So please pray that he will have an interest in eating and that he will not throw up anymore.

I have talked with my program director who has been extremely helpful in keeping my salary and benefits going for so long, but they have done all that they can do and that will end this month. Our insurance will continue, we just have to pay the premiums so that is good. She also told me that I have as much time as I need and that I have a spot there whenever I am ready to return. We are so thankful for all the support that she and everyone in my program has given us.

Gillian's sister Lynn and her husband and cousin Will are here this weekend. Joseph loves Will and finds new energy to play with him. We have big plans to play this weekend. Last night I wrestled with Will and Joe and Holly was in the other room. Gillian said that when Holly heard us she got a huge smile and wanted to watch us. She was so happy just to see Joseph acting like his old self.

Please keep praying for Joseph that he will eat, that he will stop throwing up, for complete miraculous healing, and for continued strength and hope for Gillian and I. We are so thankful for all of our support and for everyone who is helping us get through this.