Wednesday, March 26, 2008

Wild Animal Safari

These pictures posted out of order. Most are from the zoo/safari, the ones of them in capes are from today at home playing "Incredibles"

I had to come to my local Krystal to get a high speed connection to upload some videos. Yesterday we went to Pine Mountain GA where they have a wild animal safari. You can rent a van and drive through a pretty big area where elk, deer, zebra, emus, ostrich, buffalo, water buffaloes, giraffes (although we didn't see those) and a few other animals come up to the car and you can feed them through the windows. It was pretty neat. They also have a smaller zoo area with animals that wouldn't do so well just walking around with all those other animals like bears, Ligers, tigers, wolves, lions, and some others. Joseph and Holly loved it. I forgot to bring the Easter pictures and videos, so they will have to wait for later.

Joseph is doing well and is keeping very busy seeing all his friends and going to all his favorite parks and playgrounds. We have been to Bouncing Bob's like five times in the past week (that's a giant indoor area full of the moonwalk bouncy things). He has done much better taking his medicine in the past few days, so hopefully he has adjusted to taking it everyday. His hair has continued to fall out as you can see on the video, but I think it's slowing finally.

We are enjoying our last few weeks in Atlanta seeing all our friends and having fun as a family. Thank you to everyone for your continued prayers. Gillian and I are definitely needing them too as despair and feelings of hopelessness are always lurking nearby. Thank you for posting all your comments as well, they continue to be extremely encouraging. Oh and to answer some of you, no, I am not going to open an illegal medical clinic, I guess the sarcasm didn't translate well.

I'll try to post the easter pictures soon, but enjoy the videos from the safari, sorry they're kind of all the same.

Friday, March 21, 2008

The Future

After a lot of prayer and discussion with lots of people, we have made a few big decisions about the immediate future. First, I have decided to withdraw from my residency program. This was not an easy decision, but I feel like I need to spend as much time with Joe and the rest of the fam as possble. Second, we have decided that it would be best for the family if we moved to Nashville closer to both sets of grandparents. Although we have fantastic friends here in Atlanta, nothing beats having family close by who love our children as much as we do. We are planning on moving pretty quickly, by the middle of April. Gillian's parents have a house in Franklin that they rent that they will be letting us stay in, and it is very close to both our parents. Thank you, Nana and Grandad! So these are pretty big changes, but we really feel like both decisions are what is best for Joseph and for the rest of us. I will try to find a teaching job for the next school year, but if that doesn't work, I will open up an underground unlicensed doctor's office.
Joseph is doing well. He loved our time at the beach but was ready to come home and play with his friends. The radiation has finally taken a lot of his hair which was really hard to watch, but I think most of what is going to fall out has already fallen. They say that it should grow back, but there is a chance that it could be permanent. He and Holly have already had one easter egg hunt with their friends and there could be two more, so we'll post some pictures after that happens.
We hate to leave our friends in Atlanta, but in dealing with all of this we are going to need our families to provide a lot of help for a long time. Please pray for us through these changes, that I will be able to find a job quickly, that the move will go well, that Joseph would start sleeping better at night, and that the transition to a new city would be smooth.

Wednesday, March 12, 2008

Beach Fun

Well, we are having a great time at the beach. Joseph and Holly are thoroughly enjoying themselves and the weather has been great. Just seeing the ocean and the beautiful lakes and golf courses has done wonders for my soul. I didn't realize how much a change of scenery can lift your spirits. Being back in Atlanta was awesome, but this is like heaven! I think we mentioned this before, but one of Joseph's facial nerves was severely damaged from the surgery and so he doesn't have sensation or a corneal reflex on the left side of his face. It means that if something gets in that eye, he doesn't feel it or know it is there, and it could really damage his eye. Please pray that God would protect that eye, that we would see anything that does get in there, and that God would heal that nerve. The surgeon said it was "pretty much shot," but God can do anything so we'll ask anyway. (The reason I mention all this is that sand is a big concern while at the beach, and two days in a row we found two different specks.) We have been swimming in the pool a lot, and Joe has discovered he can "swim" when he has a little ring around him. He is so proud of this and says, "Look, I swim like Will!" (his hero and cousin). Soon Holly caught on and now we have two little swimmers! He also has gotten a lot more confident on his little bike and is pedaling around like a pro. Both of these things make him so proud and it's really cute to see.

A little dancing on the boardwalk

Saturday, March 8, 2008

MRI looks good

Hey everyone, just wanted to right a quick note to say that today's MRI looked surprisingly good. There was very little tumor remaining on his brainstem and the radiologist said that he couldn't really even measure it. It was still there, but it was significantly reduced in volume. This was not the "official" read of the film; we'll get that in the mail in a few days, but anyways we'll take good news when we can get it. Like I mentioned in earlier posts, usually you don't see a lot of change until 3-4 months after radiation, so hopefully this means it will continue to shrink.

It was wierd to be back in Memphis so soon, it felt like we had been gone for a long time. It was good to see Jennifer and Matt and WK last night and eat dinner with them. Today however, joseph did not enjoy himself, and neither did we. He basically screamed until they knocked him out which was 2 hours later than scheduled. Then it started snowing in Memphis. Really snowing. Then uncle Sam rushed us to the airport and then we sat in our plane for 3 hours waiting for the plane to de-ice. So we didn't get in until about 2:00 AM. Extra special thanks to the Slotkins for staying with Holly tonight into the wee hours and to Suzanne and Matt for waiting at the airport for us. We are surrounded by such amazing people. Thanks for the prayers and for every way that we are being supported. Now on to the beach.

Wednesday, March 5, 2008

Back for a Scan

We are headed back to Memphis tomorrow night. Although none of us relish the idea of going back into St. Jude's, I am glad we are one of those families that can now say, "We are just back for a scan." I used to be envious of those people as we sat day after day in waiting rooms thinking 6.5 weeks was an eternity and they only had to be there for one day. Don't get me wrong: We are so thankful that St. Judes exists and that Joe is privileged to get such amazing care--it is just a hard place to be for a long period of time.
It has been SO nice to be home. The kids are happy, we are happy, and we have truly been having so much fun seeing our friends and just visiting our old haunts again (Bouncin Bobs, museum, Target, etc.). Joseph is energetic and happy and Holly is more herself now that we are home. They are even being super-sweet to each other, hugging and sharing a lot, glad to be back in our old routine.
We have a day full of appointments on Friday--first he will have his port accessed (his absolute least favorite part), then we will have the MRI, then we will meet with our radiation doc and neuro-oncologist to discuss the scan. We are planning to head back Friday night, then leave for the beach on Saturday. Joseph took the news that we had to go back okay once we told him Florida was coming soon after.
As Allen mentioned, this first scan is not the most reliable as to what his tumor is doing b/c the radiation can cause swelling...but it is standard procedure and I guess they just want to make sure that, if there is swelling, it isn't causing any other problems. Of course, we are hoping that God has just chosen to remove the tumor completely and the doctors will be flabbergasted that he is completely healed.
We are thankful for Joseph's amazing recovery from 2 surgeries and 6.5 weeks of radiation. Looking at him I see God's hand on him, healing him and restoring his buoyant personality.
Oh, and Mimi, I have to add another cute story. Joseph out of the blue asked, "Can we call Jesus? I want him to come over!" I said we couldn't call him. "He doesn't have a telephone?" Joe wanted to know. Hmmm...I answered that he doesn't, but Joseph can talk to him anytime he wants; he just has to talk to Him and Jesus is right there with him. He put his hand on his heart and said, "Okay." It brought tears to my eyes to see his pure desire to know Jesus. I just know God has drawn especially close to Joseph through all the trials and pain he has endured and given him a special comfort to meet his needs.

Sunday, March 2, 2008

Back in the ATL

Joe pushing Holly
The only picture we could take of Joseph as a pirate

In my traditional pirate apparel
Who was this party for
Cold pizza

It's been a busy few days back here in Atlanta. I'll try to get you up to date. Joe and Gill flew back on Wednesday and Gillian said that he was asleep before the plane even moved away from the terminal. She had to wake him up after everyone else left the plane and he didn't really wake up until they were off the plane. He was really confused and started crying that he wanted to get on the plane to go back to atlanta. Then he said that his plane didn't go very fast and that it was slow. I guess that would be confusing. Then he and Gill were picked up by some friends who met some more friends at our house where they had some pizza and a little welcome home party for him. He now has a huge banner (I haven't really measured, but maybe 2ft x 4ft) of lightening McQueen and Mater with "Welcome home Joseph" written on it.

The next day he started asking about his pirate party and so we had to hastily throw something together for him. We had a party yesterday for him at his favorite playground at the Clairmont airport and lots of his friends showed up dressed to be pirates. Thanks for everyone who could come with a one day notice. He had a great time climbing all around and chasing everyone with his oversized sword. My favorite moment was when I was supposed to be watching Joseph and Holly but started talking and lost track of Joe. I couldn't see him and so I ran around the playground and saw him at the top of this arching monkey bar structure. He was just climbing and having fun. It was great to see him acting like the past few months never occurred. I'm sure the party would have been better if we had more time and it wasn't freezing and windy outside, but I don't think he would have enjoyed it any more than he already did.

He and Holly are very happy to be back home. Other than not wanting to take his daily chemo and waking up at like 2-3 in the morning he is doing great and ready to get back to the daily routine.

I do have some specific prayer requests for the next few days.
1. that Joseph would not freak out when we get back on the plane and go back to St. Judes on Thursday. He has asked several times about going back and today I told him for the first time that we have to go back every once in a while. He is very anxious about anyone touching his port and that's all he thinks about when St. Judes or Memphis is mentioned. Also, one of Gillian's sister's friends used skymiles so that I can fly with them this time and not drive or not go. Many many thanks.
2. That we would learn not to be anxious about the future. I know that this will be a long struggle with MRIs every three months, but we can't function if we are paralyzed by fear or dread of what the next scan will show. We of course hope and pray that each one will show a miraculous lack of tumor. They told us that the first one most likely will not show much if any change since the effects of radiation usually don't show up for a few months. It could in fact be bigger due to inflammation. But anyways, pray that we will trust in God's plan and not spend our time together in fear.
3. That joseph would take his medicine without a fight and that he would sleep through the night again. While we were in Memphis he slept with one of us in the bed pretty much the whole time, but he is back in his own room in his own bed. One of us has to stay with him until he falls asleep which can take a few minutes, but it's a lot better than sleeping all night with someone who kicks you in the face.
Thanks again for continuing to pray for us, and thanks for all our friends in Atlanta providing meals, babysitting, and friendship.