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.

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

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)

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.

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.

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.

Some photos of life in Memphis

Big Hugs!!



Holly "babying" the puppy.



Joseph holding the puppies from next door.



Joseph trying to keep Aunt Jennifer from leaving by sitting on her.



This is a picture of Joseph enjoying all his new Veggie Tale stuff. Thanks, Melissa and Big Idea for sending Joe this huge box of DVDs, CDs, toys, poster, etc. His eyes were as big as saucers when he first saw the box filled with stuff for him!



Uncle Sam and Grandad playing trains with Joe.

I hope these captions match up with the right pictures. If not, I'm sorry--hopefully you can figure it out. :)
Joe overall is doing well. He is starting to get nauseous from the radiation and is not eating or drinking much. He has plenty of extra weight from his steroid days, but they want him to be getting plenty of calories every day to help him stay strong and tolerate the treatment well. The other day we had to go in for some IV fluids because he was vomiting and not eating or drinking well. That was no fun (although Joe did get to sit in a recliner chair and watch "Little Mermaid" while the fluid went in) to do at the end of a busy day. So, please pray that he will get his appetite back and that he will take his medicines willingly. That has been a battle the last few days; he has started really putting up a fight. It is hard enough to have to give him so much medicine, but spitting it out and screaming really makes it tough.
He is playing and otherwise acting like his normal self; his walking has gotten very steady and he is much more out of his shell. He actually wanted to go to St. Judes this morning and looks forward to seeing "Dr. Nick" and playing in the waiting areas with all the toys. Allen has been pretty sick with a bad cold, but he is finally starting to feel a little better today. We are headed to Nashville this weekend to celebrate Holly's 2nd birthday. It will be wonderful to have a little break and celebrate with family and friends.

My thoughts

Well, I have procrastinated writing on the blog. I haven't forgotten, and Joseph is not doing badly, and we aren't really that busy. I just don't know what to write. We are thrilled with his progress. He is sleeping well, playing, laughing, resuming normal 3 yr. old activities and generally being his old self again. It is an answer to prayer and a real joy to see. I just have so many mixed emotions and thoughts it is hard to really enjoy this without fear and doubt creeping in. I finally had to have a talk with God about this, about why this is happening, how are we supposed to deal with this, how could he take our precious son? When I have some quiet moments I feel like he brought several verses to mind:
"Do not be anxious about anything, but in everything, through prayer and petition, with thanksgiving, present your requests to God, and the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus."
I realized that God doesn't say you will get what you want in this verse, but that he promises his peace. I think that is enough for me.
Then another verse was:
"I know whom I have believed and am persuaded that He is able to take that which I've entrusted unto him against that day."
In this verse I was reminded that we have entrusted Joseph to Jesus, and He will take care of him no matter what the earthly outcome is.
The next verse is more of a story...it's about Jesus's followers asking about a man born blind, and they are wondering, "Whose sin made this man blind?" Well, here is the exact scripture: (John 9)
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
3
Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him.
4
We have to do the works of the one who sent me while it is day. Night is coming when no one can work.
5
While I am in the world, I am the light of the world."
6
When he had said this, he spat on the ground and made clay with the saliva, and smeared the clay on his eyes,
7
and said to him, "Go wash 3 in the Pool of Siloam" (which means Sent). So he went and washed, and came back able to see.

This one gave me a glimmer of hope.
The last verse is:
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight."

This verse reminded me not to put too much stock in my own reasoning and predictions (which lately have been pretty pessimistic) or even in others' reasoning or statistics, but to trust that God has the power and wisdom to do what He thinks best for Joseph and for all involved.
I write all this because honestly, Allen and I are sad a lot of the time, worried, heartsick, fearful, etc... my words would probably just make you depressed. But, God is faithful, and his words are true no matter how we are feeling. And they are a lot more hopeful and certain and powerful.
Thank you all for contintuing to pray for us. We will post more pictures soon...Joseph got a stylish new haircut this weekend and had a lot of fun around town so we snapped lots of shots. Oh, and Holly got some new bows to match her red shirts (she has decided that jeans and red shirts are IT). Now tech-unsavvy parents have to figure out how to post them.

Museum Pictures

Today we had a fun trip to the museum with a surprise visit by Uncle Sam!

Shooter!

I'm happy to report more fun and laughing days with Joseph. He has become obsessed with this little light-up gun that shoots foam discs at us (Thanks, Nana!!). He becomes absolutely delirious with joy while playing this game (we call it shooter). At first, he just wanted to shoot Mimi over and over again, but last night he starting running around the house from her, which was so great to see. Overall, he is acting much more like his goofy self and is so cheerful and energetic again. He even went down the slide at the zoo playground (right after I wrote he hadn't played on a playground yet!). He is off the steroids and is sleeping through the night again and taking a nap. It feels so good to have that normalized again. Those steroids are no picnic, let me tell ya (just take my word--don't try them on your kids).
We went to see the Peabody ducks last night, which was not the leisurely visit we expected. We got there 15 minutes early and the little fountain and red carpet were completely surrounded by eager children and parents. We finally squeezed in and got to see the ducks but then we were told to move back so the ducks could exit...well, of course no-one wanted to move back, Joseph got claustrophic and Holly started throwing herself down on the floor screaming. So, we got out of there with both kids screaming and found an ice cream shop, which made everyone happy again. We were told later that the ducks are not usually such an attraction, but there was a big basketball game on later so everyone came to see the ducks first. So, we're going to try again on a weekday and hope for a calmer visit.
Today we will probably try the museum here, which is amazing and has a real car inside and a fire truck. Holly and Joe both love it. Memphis has some great activities for kids and Jennifer's house is at the most 10 minutes from everything. The museum is 5 minutes as is the zoo.
Joseph is starting to get a rash on his face from the Tarceva (which is one of the side effects). We were actually hoping he would get it b/c it is supposed to mean the drug is being effective. It can be very uncomfortable so they will give us medication to relieve any pain. Right now he doesn't notice it--it just looks like a little acne.
Holly is back with us and Joseph was so excited to see her. She was thrilled to see him but especially the dogs. She is good b/c she reminds me to change their water and give them food. She has a special bond with them. Oh, and I have to mention that Holly has started to remind me to pray for Joseph (she must have gotten into the secret network of children who are banding together to pray). When I put her to bed she will say "Amen?" which means "Let's pray." Then, if I forget to pray for Joseph (see, I'm not such a great parent) she will say, "Pray, Jusha?" (Joseph). Then she says a big "Amen!" afterwards. It is so sweet to see such a little child have faith. Thank you for praying for us and all your encouraging comments. We love reading them all.