Recovering Well and 4th of July pics

Joseph is doing great considering all he's been through. He is up walking around and is moving his head a little better. Today he asked to go to the playground and ride his bike, but when we got there he was immediately ready to go home. I think he forgot that he's not up to full speed and full play.

We still have heard nothing about the pathology of the biopsy they sent, and are anxiously waiting so that we can form a plan. I assume we'll hear something next week, but I really have no idea. All of his regular doctors were coincidentally on vacation last week and even the surgeon left town the day after the surgery. So the lesson is to check your doctors' schedule before you get sick.

He has been on steroids for about three weeks now and his little body is starting to show it again. They also make him an extremely light sleeper and he is waking up two or three times a night. The steroids are tapering down and he'll be done in another week or so. We will be extremely happy when they finally stop and everyone gets to sleep again. Thank you all so much for your prayers this past week. Please continue to pray for him.

We never got a chance to post pictures from July 4th, so here are some. Joseph and Holly rode in a neighborhood parade with the largest entourage I've ever seen. We had like twenty people walking around with us including his grandparents, WK, 4 uncles and Jennifer, and gillian's extended family from Ireland and Holland. He and Holly and sometimes WK rode in a power wheels jeep. The theme was I think fantasy or something like that so Joseph was once again Sir White while the girls were princesses. It was a great time and afterwards Joe and Uncle Matt P. lit some fireworks. Holly watched safely from inside the house. All of these pictures and video are obviously from before the surgery.

The entourage: almost everyone you can see was with us

posing with one of the elaborate floats

Holly's safe zone

Joseph being really silly

Coming Home

Joseph was released today from the hospital barely 48 hours since his brain surgery. Today he was up sitting on the floor playing for an hour and a half and he has started walking too. He isn't moving his head very much, but even that has improved just over today. We're spending the night back in the Grizzlies house and we have an appointment at St. Jude's in the morning. After that, we'll hopefully be back in the car on the way home. We are not sure when we will know the results of the biopsy but will be in conversation with our doctors once that comes back. Our main doctor has been out of town and will return next week. Please continue to pray for Joseph's healing--both from the surgery and from the tumor. His pain has gone down considerably, which is great. He is not needing much pain medicine at all. We are just giving him some every 6-8 hours or so. What a trooper! Thanks to everyone who is praying for Joseph and for us.

Recovering well

Joseph is again stunning us all with his quick recovery and fighting spirit. Last night I was pretty depressed and was feeling kind of listless and weak. Well, within one minute of Joseph waking up I was crying laughing. This boy cracks me up. First, he wanted HIS underwear back on and wouldn't accept the hospital diaper as an alternative. After asking about 10 times, we finally unplugged all the tubes and got the boy his Bob the Builder undies on. Then, he wanted his blue crocs on, which just got me tickled because he has NO clothes on but he wants his shoes on. And, he drank 3 juice boxes and an entire grilled cheese before I left at 9:30 p.m. Allen, ever the sacrificial Dad and husband, stayed by his side all night in a chair and let me go sleep in a bed. Boy, I'm so lucky.
This morning Joseph had his post-op MRI and he's now back up in his normal room without any IVs hooked up or anything monitoring his heart rate or BP. So, I guess that means he is recovering very well since he doesn't need any of that. He and Daddy are both soundly sleeping and Joe's pain seems to be fairly normal and is being managed well with morphine. He keeps saying he's ready to go to sleep now (meaning to be sedated), so he obviously thinks the surgery hasn't happened and he's ready to go get it done. What a blessing he doesn't understand everything that is happening. He is also very irked that he can't move his head and sit up yet. He was like an irrated executive yesterday, saying, "I can't move my head! I can't do ANYTHING!" He knows there is pain there but has no idea where it came from.
Needless to say, we are still very bummed about the news yesterday. But if Joseph isn't ready to quit fighting, we sure aren't either. We will find out the official results of the biopsy then formulate a plan of attack on this horrible tumor that doesn't belong in my baby's head. Thank you all for your notes and prayers.

Surgery finished

Joseph has been out of surgery for about 2 hours now and is in the ICU recovering. The surgeon said that they removed as much of the area as possible and that things went fine. He said that what he removed looked like tumor, not radiation necrosis. We have to wait for the pathology to come back for sure and that won't happen for a few more days, but it does not look like the good news we wanted to hear. I have to keep reminding myself that this surgery was mainly to remove the pressure from the growing mass and in that light it was successful. The fact that it looks like tumor is devastating.

Joseph has had a rough day and is very irritable. The ICU is not like the one in Atlanta with nice private rooms and the feeling of security. He has curtains for walls and no TV or anything to distract him. Hopefully he will just spend one night there and then be transferred to the floor. But this night is going to be very hard. Please pray for peace and for strength for everyone to get through it. Thanks.

Prayer Requests & Rally Foundation

Hi all,
We head back this afternoon to Memphis. His surgery will be tomorrow around lunchtime, although there will be no lunch or breakfast for this little guy. So, that is number 1 on our list of things to pray for. :) Please also pray:
--that Dr. Boop will be able to remove this necrosis/mass/tumor easily and without any damage to nerves, etc.
--that the biopsy would show it is necrosis and NOT progression
--that we would have wisdom as to what treatment to pursue if there is tumor growth
--that God would give us safety and peace throughout the surgery and recovery
--that Joseph's recovery would again be swift and free of infection or complications
I could list a hundred things, but I think these are the main things. We cherish your prayers and truly feel them.
A dear friend of mine sent me this verse from 2 Corinthians 1:8-11:

For we do not want you to be ignorant, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again. You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.

It just completely describes our feelings...how again and again we have felt the sentence of death in our hearts, but how we have been so upheld through the prayers and kindness of friends. You all have been the hands and feet of Christ for us and we are so grateful.

Another thing I wanted to write about was this wonderful foundation called the Rally Foundation. Every year they do a cross-country bike ride to raise money especially for childhood cancer research. They ended in Nashville and rode through Nashville in Joe's honor. The above pictures are from the lunch they invited us to. If you would like to check out their site it is:
rallyfoundation.org and rallyacrossamerica.org
Joseph is listed under "kids" on the rallyacrossamerica site.

Surgery Monday

After meeting with Joe's surgeon we decided that surgery would be the best course of action. He is very confident that he will be able to remove a significant portion of this area with minimal risks. They again stressed the importance of operating now instead of waiting until the problem was worsening and it had to be done emergently.

We'll be home for the weekend and then head back to Memphis on Sunday. The surgery will be Monday around noon and should last about 2-3 hours. The surgeon expects him to have a quick recovery and a short stay in the hospital afterwards.

So it's another surgery. We feel pretty good about the plan; obviously we're anxious about the surgery, but we feel like it will help his symptoms, get him off steroids, and hopefully give us some definite answers about the nature of the spot.

Please be praying for him and for the surgery throughout the weekend. Thanks.

Still no answers

We didn't get the definitive results we were hoping for today. His MRI showed a larger area of abnormality and the PET scan showed some minor changes from the last one. The PET showed a slightly increased metabolic activity that could be interpreted as normal tissue or the beginning of tumor activity. The conclusion was that they still could not say whether this was tumor progression or necrosis and edema from radiation.

Because it is putting pressure on his brain stem and causing issues for Joseph he has been on steroids, which have helped to reduce the pressure. Over the past week, his head tilting has basically gone away and his balance improves daily. He's not quite back to being as fast and steady as he was, but he's not falling over much anymore. So the short term plan is to continue his low dose steroids.

The long term plan is still up in the air. The only way to be sure whether it is progression or pseudo is either to show a decrease in the size of the area with repeated scans over time or to surgically biopsy the area. Because of the location of this spot, if it continues to expand Joseph would have much worsening symptoms regardless of whether it is tumor or necrosis. We are meeting with the surgeon who did his operation in December to discuss if surgery to this area would be an option. If it is an option, then it would remove a lot of the area, take the pressure off of his brain stem, and give us a biopsy and a conclusive answer as well. On the other hand it would be another surgery with another recovery. So we might have some tough decisions to make if it is an option. We'll find out tomorrow.

Joseph is doing well. He did not like being here at first, but after the needle came out yesterday, he has returned to his normal goofy and hyper self. As I am writing this, he is getting his eyelashes trimmed by Gillian. He was complaining that he couldn't see and we realized that his ridiculously long lashes are so thick that they are clumping together and blocking his vision. How many moms can say they've given their child's eyes a hair cut? She really is Super Mom.

CT scan

Joseph's CT scan today did not show any increased pressure which is good. They did not have his most recent MRI to compare the images, but there did seem to be a larger area of abnormality. Like I said in the last post we knew we weren't going to learn anything today about the nature of this spot, and true enough they weren't able to tell us anything new. This increase could be swelling from an area of necrosis or true progression. We have to wait until next week when we go to St. Judes. So the plan is for Joseph to keep taking his steroids to help with his symptoms while we wait for next week.

Joseph did great and was able to have the scan without any sedation. It only took about a minute and Mom and Dad were both in the room with him holding his hands and telling stories. He completely understood that if he was really still then we wouldn't have to access his port, and he was still as a statue.

Thank you all for your messages, emails, phone calls, and prayers. We continue to need them through next week.

MRI Tomorrow

Over the past two weeks and since the whole pseudoprogression thing, we have noticed that Joseph has started his head tilt again. It was gradual and we denied it as long as we could, but it is definitely back. This was the first sign that something was wrong way back in November. Over the past few days his walking has become increasingly unsteady. This is obviously very concerning for us.

They told us that even if this truly is psuedoprogression we may see some symptoms, but they appear to be increasing daily. After talking with his doctors at St. Jude, we are hopefully going to have an MRI tomorrow (Wednesday) here at Vanderbilt. The images will be sent to Memphis and they will compare it with the previous ones. Hopefully this will help us find out what's going on. Best case senario is that the spot is still the same size and shape and that his symptoms are due to whatever necrosis and stuff makes up the spot. Worst case is that the spot really is a progression and that it is growing bigger. If that is the case, then we will stop the Tarceva and start on a new chemo regimen. We think he'll start CPT-11 and Avastin, but we're not totally sure yet. He will also probably restart steroids regardless. We have no idea if another surgery would even be an option.

This is a very difficult time for us. Seeing him like this reminds us of the terrible days back in November. Please be praying for him and for us. We really appreciate it.



UPDATE:
Okay, now the plan is to get a CT scan here to see if there is any increased intracranial pressure. They will not be able to tell whether this is progression or not. We will be going to St. Judes on Sunday for an MRI and PET scan Monday and Tuesday which will be able to tell what's going on. So we won't find anything out until next week.
Please pray that Joe will take his medicine easily without much fight and that he will have great patience and endurance for the battery of tests that await. Thanks.

A few beach pics

We had a really fun and relaxing trip to the beach. Oddly enough, it was not nearly as crowded as normal which was fabulous. We had great weather and Joseph and Holly became even more comfortable in the water and on the beach. Thanks to Nana and Grandad for allowing us to use their beautiful beach house and to Mimi and Big Daddy and Uncle David for spending time with us down there.