Playing Again

I awoke this morning to the pitter patter of running feet (okay, more like thunder) and Joseph screaming and laughing from a game with Allen. After many days of him mostly wanting to sit on the couch, not wanting to play or laugh or even smile much, this was truly a wonderful way to wake up. He had a very good day yesterday, too, and played a lot with Uncle Sam and David at Nana's house. We put him back on steroids and are now starting to wean him off a second time in the hopes that a slower wean will yield better results. We would love for him to be off steroids because as you know they interfere with his sleeping and eating habits and his overall mood. So, we would ask you to pray that this wean is successful and that he has no scary side effects from stopping them.
I think Holly is happy to see Joseph improve. Today I had to pull a tick off of him (which I am terrified of doing, but it was successful) and he was pretty upset about it. Holly went over to him and just held his head for a long time and kissed it, then she kissed him right on his scar and said "It's okay, Jusha, I kiss your boo-boo, too." They have started up their hilarious conversations, too. My favorite thing is that Joseph asks Holly permission to do things. He will say something and then ask, "Is that okay for you, Holly?" I keep telling him that Holly is not in charge (at least we try to pretend we are in charge), but it doesn't stop him...
I also am glad to see him happy again. When he is happy, I am happy. When he is miserable, I am pretty miserable as well. I keep wanting to hope that he will be fine and back to his normal self soon, knowing full well that he may possibly never be back to his normal self. It is a trying roller coaster to be on.
No matter what happens, I still come back to the hope that God will just touch Joseph and completely heal him and we will all give glory to God for a miracle. However, I am comforted to know that if the Lord does take Joseph home, it will be the most beautiful and glorious home he has ever known, with no sickness or pain or sorrow.
So, we are taking things each day at a time. We only have this day--everyone does. With Joseph, we are faced with his mortality more severely, but none of us is promised a tomorrow. So we are just trying to soak up every minute and find joy in the fact that we can be together and have moments of normalcy and fun.

Good news, we think

Well, Allen and Joe and Mimi have left St. Jude and are on their way to Target and Moe's. They did a CAT scan, which Joseph was able to sit still for, and our surgeon and neuro-oncologist both saw no tumor growth or anything different from the last scans. They believe all these new issues are due to steroid withdrawal, so we will keep giving him the steroid and hope to see him improve. Both Allen and I are a little skeptical because we have never seen him act this way and it is hard to believe that simply coming off a steroid could do this. But, we are choosing to believe the doctors, trusting they know a lot more than us, and be glad that there is no growth or infection or anything that requires surgery. So, thank you for praying. God did give them a very short trip and Holly and I are looking forward to having them home tonight.

New Issues

Today Joseph has been very off-balance and uncoordinated. He has been complaining of headaches for the past few days too. He also seems not himself--unusually goofy and confused. We initially thought that this could be due to coming off of his steroids and so we gave him two doses today, but it doesn't appear to be having any effect. So, unless he dramatically improves overnight, we're going to head back to Memphis in the morning to get some scans and see what's going on. It is not very likely that this is tumor regrowth so soon after surgery, but I don't know what it is. It could be infection/inflammation from the surgery or something like that.

We're very concerned and sad that we have to go back. Hopefully there will not be a major issue and we can come right back. We are very tired and were hoping the end of steroids would be a positive thing...so please pray for our endurance and for Joseph's as well.

Held

I am more of a do-er than a feeler. If something goes wrong, I want to do something about it. I don't feel it is right to just wallow and be sad and self-pitying. I am not saying this is right, but this is how I've been in my life until this point. And life has a way of kicking you off your rear most days and requiring you to keep going, which I am grateful for. The fact that my kids still need to get dressed, brush their teeth, have breakfast, go potty, etc. reminds me that life still needs to be LIVED, despite the death we fear is at our door. And, thankfully neither one of them fully comprehends the implications of Joseph's sickness, so they don't have the fear and dread that we experience and they cause us to laugh and play and have unspeakable joy due to their innocence and love.
However, this experience has taught me that feelings and sadness are such a vital part of life, and letting myself feel them does not mean weakness and wimpiness. It just means I am human. As a Christian, I do believe in God's goodness, faithfulness, tenderness and love towards me, but I can still be appalled at this tragedy in my life. As a mother, I can still care for my kids, discipline them, take them to playgrounds, yet all the while marveling that I have another day to celebrate their lives. As a wife, I still quarrel with Allen over trivial things, but I am getting to know my husband in a much deeper way, seeing his compassion, wisdom and deep deep love for his family that brings me to tears.
My tendency is to push away the tears and the feelings and get on with business as usual, but I am learning that if I will let them, these feelings bring about a deeper me, one who is more fully human.
All this to say that yes, my life would be a lot easier if Joseph were perfectly healthy and continuing his life the way he would have before cancer. But I know that God doesn't give us lives of ease; his main purpose is to make us more like Him, and if that means suffering then it is worth it. And I believe with all my heart that Joseph feels more secure and loved by us and by God because of this experience. The empathy and love I see in him are truly amazing.
I turned on the radio a few days ago and this beautiful song (Held, by Natalie Grant) came on that I feel like could have been written for me. It brought to the surface so many feelings that I had to wrestle with, and I could not get the words out of my head. These are some of them:

"This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow"

If you can somehow listen to it, I would recommend it. Not only are the words beautiful, but the music is too.
Thanks for listening to my ponderings. I'm sure you are wondering how Joe P. is doing. He is well and has started taking his interim chemo. So far, we have not seen any side effects, although he is taking anti-nausea meds 3x a day. He is playing a little but is not back to full speed yet. We have been going to Moe's a LOT (where he and Holly enjoy sitting by the door and yelling "Welcome to MOE's!!! at everyone who walks in). Target has become a daily activity and Joe's biggest complaint is that we already have all the cars and trains already! He still has some pain so he is taking ibuprofen to help with that. Please continue to pray for Joseph's healing and for God to sustain all of us and give us wisdom in decision-making and parenting. We return to St. Jude Aug 19-20 (Joseph's birthday!) for some more scans before we begin Avastin. Thank you, thank you for continuing to pray for our family!!

Progression

We heard back from the final pathology today and talked with our doctor at St. Jude. They discussed Joe yesterday at the tumor board and they all confirmed what the surgeon suspected, that the tumor was back.

We are planning on starting joseph on Avastin/CPT-11 which is another trial drug combination. He won't be in the trial version which will allow us the same medicine and treatment and also the freedom to give him any other supplements we want. However, we can't start that treatment for five more weeks since it causes poor wound healing and Joseph just had surgery. While we wait, he will take one cycle of etoposide by mouth for two weeks to try to stop or hold the growth of the tumor cells. Then we'll start Avastin/CPT-11 which is given IV every two weeks at St. Jude.

We are obviously very down about the news, but as Gillian said in an earlier post, we are not ready to give up yet. Joseph is doing great and is starting to play normally again, running and chasing around the house. He gets stronger every day, and as we taper off the steroids, he is sleeping more as well. Please continue to pray for daily improvements and mobility, that we would all get sleep, that this new treatment would work, and that he would not have many side-effects from the etoposide. Thanks for all the support you give us through your words and prayers.

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.