Go Joe Go

Quick update on Joe P.: He is now walking around very quickly, holding our hands--although this morning when he did his laps around the house chasing Aunt Lynn I barely felt like I was helping him at all. His motivation to get walking is always a new car, so he and Holly are now at Target with Nana and Aunt Lynn picking out their new toys. As most of you know (Christy especially :)), Target is one of Joseph's favorite hang-outs--especially now that he has discovered that is where they keep the cars.
He is taking his medicine better and better, and Holly takes her medicine (juice) as well, which helps him feel like they are even (which they always have to be!). He had to take 6 teaspoons of one medicine at first and we are now tapered down to 4, but if any of you have tried to give your child even one tsp. you know what a battle it can be. He is being a real champ about it, especially since it doesn't taste very good. We have done some outings to the park and McDonalds but so far he hasn't been up and running around yet. It is nice to be out of the house and get some fresh air, though. And his eating is fabulous--the steroid he has to take increases appetite, so no worries about getting his nutrients.
His sleeping is okay--he is usually up a few times at night, but he is sleeping some and taking a nap during the day. He really loves his new room and I think feels even more comfortable in it than he did in his toddler bed.
We are meeting with our awesome neuro-oncologist on Thursday. Have I mentioned how much we love her? She has been so kind to us and we feel completely confident in her abilities, which is a real blessing. She gave us 3 or 4 options for treatment, one of which would be at St. Jude's in Memphis, so we are going to discuss that more with her on Thursday. Please keep praying that God would make the best decision clear to us.
Again, we are overwhelmed with our friends' amazing generosity and compassion. Our house is overflowing with groceries and food and Joseph's car population has doubled in no time. We do have some great new pictures from Aunt Lynn's new camera, so we will post those soon.

Good morning

This is not just a greeting--we really had a good morning. Joseph woke up at 8:30 after a good night's sleep (with a few wakings). He sat up on the couch and watched his new train go around the track for a long time, then he sat up completely on his own and fed himself 2.5 bowls of cereal. We got out his new play-doh set and he and Holly and Daddy made "spaghetti." He even walked around with help and was smiling and enjoying himself more than he has in a long time. It was like he woke up and forgot he had had surgery and wasn't feeling well. We praise God for his small daily improvements. I'm trying to add photos so hopefully they will post okay.
Oh, and Scott, to answer your question about toys. Joseph has gotten some wonderful toys--we have even had to put some away to present later or for Christmas. Thank you all for the sweet presents. He has or will enjoy all of them. So I would say to hold off for now. We'll let you know if he is just begging for a Wii or something (or if Allen is). :) But I think I have to side with Paige on that one. Just say No!

We're home!

We came home from the hospital today. It felt so good to leave the hospital with our boy, and he got to breathe some fresh air for the first time in over a week. The physical therapists were impressed with his strength and movement so the doctor said it was okay to leave. We still need to work with him on walking by himself, sitting up more, feeding himself, etc. I am confident he can do all these things but right now it is just more comfortable to lie down and let us do everything for him.
We also met with our neuro-oncologist again today and she outlined several options we have for treatment, all include radiation, but some add in chemotherapy drugs or other drugs. We still need to decide the best option after we read up and investigate all the options. This will probably start in 3 weeks, as soon as he has recovered from surgery.
It is really odd being home b/c part of me feels like, "Aaah, back to normal..." but then the reality of our new normal sets in and the comfort starts to fade. It is a little similar to coming home from the hospital with a newborn...you are happy and comforted to be home, but terrified at what to do with this baby who needs your full attention and care all the time. And life is never the same after that...
On a happy note, Joseph came home to a "big boy" room! Our dear friends the Slotkins and my mom set up a big boy bed (he was in a toddler bed) with the cars movie theme and some new cars pillows, etc. It looks amazing. Thanks, Mom and Beth and BJ.
Please pray that God gives us the wisdom to know which treatment option is best for Joseph. It is really terrifying to think we are entrusted with this huge decision so we would love if God would make that clear to us. Another prayer request is that we would all transition back to home life. Joseph has gotten used to us sleeping in the room with him at night, getting him goodies at all hours, feeding him, etc. It will be a slow process (but he is asleep right now in his bed by himself!) of weaning him but we need a lot of strength and patience and firmness b/c we do want him to be his independent 3 yr. old self again soon. We continue to be encouraged by all your comments, cards, calls, emails, etc. We are so thankful for such amazing friends and family. We love you all!

Results from the biopsy

Dear friends and family

We met with our neuro-oncologist today and she told us that we are dealing with an aggressive tumor called anaplastic astrocytoma. It does not appear to originate from his brain stem but from his cerebellum and is now infiltrating his brainstem. The slides from the biopsy showed normal brain tissue wrapped up with the tumor tissue meaning that further surgical removal would be severely detrimental to Joe's ability to walk, talk, function, and could in fact kill him. This is an extraordinarily rare form of pediatric cancer and the location of his tumor is even more rare. You can read all about it at this site which was the first one that came up after googling "anaplastic astrocytoma".

Right now the only treatment is radiation therapy but that will not start for 2-3 weeks until he fully recovers from the surgery. There are some other chemo agents that we may decide to use if our team thinks they might be beneficial. We feel very confident in our doctor and she is doing everything she can for Joseph. However, the prognosis is not too good. You can read all about it yourselves and given this audience, I know most will immediately. But for now, we are going to focus on enjoying every day that God has given us with Joe, hoping and praying for the best, but preparing for anything.

We have many difficult decisions ahead. We ask that you continue to pray for Joe P. and for wisdom as we try to do what is best for him. Again, we are in awe of how many people are supporting us with prayer, food, babysitting, comments, etc. Even though this is an unbelievably horrible situation, we defintely feel God's presence and there is no way that we could go through this without him and without you all.

Thanks,
Allen, Gillian, Joseph, and Holly

Tough Day

Hi all,
Once again after a rough day all your comments, prayers, and verses have lifted my spirits. How different my experience would be without the Internet. It is easy to feel like the world is the hospital room you are stuck in and nobody else in the world knows or cares what is going on. Then I see over 70 comments from people who do know and care deeply. Right now it is hard to have visitors because Joseph is no longer sleeping all day. In fact, he is barely sleeping at all. He was very agitated all day, except for his 3 hour nap after they gave him valium. Then he woke up and was pretty agitated the rest of the day. Allen is working on getting him more medicine (they had to wait on the doctor to order the valium for him), so hopefully valium or morphine will help settle him again.
I am spending the night at home and Allen is sleeping in there with him. I think I might be getting sick so I have been ordered home to get rest. Please pray that Joseph will sleep tonight and that Allen will too--and that I don't get sick.
We are meeting with the neuro-oncologist tomorrow between 11:00 and 12:00 to discuss the results of the pathology. I don't know what any of these words mean, but basically they will hopefully have found out what type of tumor we are dealing with and what the plan should be to treat it.
Thanks to each and every one of you. We feel overwhelmed in a very good way at how much our church family is doing for us and of course, our immediate family have dropped everything to support us and love us. Thanks Nana, Grandad, Mimi, Big Daddy and sissies and brothers. And thanks, Granny, for praying!! It also warmed my heart to hear that, SJ. We have also had the sweetest, best nurses in the whole world. One night nurse actually called our hospital room from home the next day just to check on Joseph b/c she said he touched her heart.
We will post again tomorrow once we have some more news.

Monday

Hi friends,
This is Gillian again. Just wanted to let you know that Joseph is improving every day from his surgery. He is talking more, saying things other than "take it off" and "I want Mommy." He requested specific movies and cars and explained to me he would eat more when he didn't feel sick. He really is being such a trooper, so sweet and accepting of his new bed-bound position and aches and pains everywhere. We realized he needed morphine more frequently than we were asking them to give it to him and that has helped his comfort. Last night he ate for the first time since Thursday and drank a whole juice box, so that was good. He kept requesting chocolate chip cookies ("a big one, from Moe's") but at 1:00 a.m. that was hard to find...so he devoured a huge piece of angel food cake our friends the Slotkins brought by. Allen might even try to take him on a wagon ride later today. This hospital has many wonderful wagons here to pull the kids around in. You just put a pillow in it and they can lie down and go for a walk, go outside, etc. to have a change of scenery. We are hoping that within a few days he can sit in it again with his friend Logan and they can make each other laugh. He still has not rolled over onto his back b/c his head hurts.
Christy, Brea, Katie, Susie, Gwen--thank you for all the goodies you brought by this morning. I wish I could have visited longer.
Please pray:
that he would be able to sit up soon and that it wouldn't be too painful to do so (he does want to eat, but I think he isn't eating that much since he's still on his tummy)
that he would re-attach to his loved ones other than mommy (right now, understandably, he only wants me--but I have to sleep at some point so I'd love for him to be OK with his grandparents, Daddy, etc.)
that Joseph would get the best possible care and God would give us wisdom on how to treat his condition, whatever it ends up being
that Allen and I would communicate well and have time together and time to sleep and charge our batteries
Thank you for all your many prayers, and I look forward to hearing from you penguin friends, Lizzi.

An update

Friends and Family and Perfect Strangers-

This is Allen writing from home. Gillian and my mom are in with Joe. He did okay today (Sunday) and would have done great except that while we were changing his sheets, his IV was accidentally pulled out(mainly due to Daddy). It was so hard to watch them try repeatedly to get new access especially knowing it was my fault. I know it's just a needle prick, and in the grand scheme of his disease it's not a drop
in the bucket, but it is just hard to watch. Anyways, they were successful and he immediately went to sleep so he should have a good night.

The plan for Joseph hasn't changed at all. We are still waiting for the pathology to return and his treatment options will depend on the diagnosis. We should know something by Wednesday or Thursday, but if it is at all unsure then the sample will be sent across the country for other pathologists' opinions. He should be able to leave the PICU tomorrow and be transferred back to the regular floors. His recovery
from surgery is going well and there have been no complications so far. He has been laying mainly on his right side which leaves his supposedly deaf left ear up in the air and he has heard every word that we have said to him. So either the hearing test was wrong or the surgery relieved the pressure on the auditory nerve. Either way that is a small victory. You can pray that he will continue to recover and that he will start to eat the food that he keeps demanding but takes one tiny nibble and says "all done." The boy never eats cheeseburgers but that is the first thing I heard him say today "I want a cheeseburger."

This is hard for me to write for many reasons, the least of which is that I used to hate blogs and never really thought they served much purpose. But let me tell you that this has been the greatest encouragement that we have. We love hearing from family and old friends and friends of friends. There is nothing better than to read
so many comments from so many different people in so many different states and countries and know that everyone is praying for us. At last count I think we have people praying in 5 of the 7 continents, so all we need is to get Africa and the penguins down in Antarctica involved. Yesterday I started to copy and paste some of the comments to a word file along with some other emails to bring to the room so we
could read them when we wanted/needed to and it was 34 pages long. I had to shrink the font down to microscopic size to get it to 19 pages. And there have been around 40 comments since. It is truly amazing and overwhelming.

Thanks to those who have come by our house and cleaned and left notes and gifts. To those brave souls that volunteered to rake our yard I am especially thankful. I'm sure you didn't know there would be three years worth of leaves back there or you wouldn't have signed up.

I wish that we had time and energy to respond and thank everyone individually who have visited/written/prayed. Ya'll have no idea what an encouragement the body of Christ has been to us. There is no way that we could go through this without each and every one of you. In my dark moments when I lose hope and wonder where God is during this, I come out to the waiting room or open email or check the comments and find Him in your faces, thoughts, hopes, and prayers.

Many many thanks,
Allen, Gillian, Joe, and Holly

Please, please keep praying

Please pray for Joseph right now. Sarah-Jane (Gill's sister) just called and told me he either kicked his IV out or it was taken out at some point and they are attempting to put it back in but have tried twice without it working. If you have ever had nurses fail at an attempt to give you an IV, you know how painful this is. At this point, they may have gotten it in but I am unable to reach anyone over the phone as I am no longer there in Atlanta myself.

Joseph has been very uncomfortable all day. Although he only drifts from sleep for short periods, he is asking to go home and says that his head has a boo-boo and that it hurts. Also, Gillian's Dad said that Joseph has been lying in the same position all day and the nurses are trying to move him, but he goes right back to the same spot.

Please pray that the pain Joseph is feeling will cease and that he will be able to comfortably change positions in his bed. Please pray that the IV will not irritate him and that he will soon be able to take plenty of fluids on his own so that the use of the IV will not be necessary.

Also, please pray that Joseph will sleep tonight. Basically, all day and most of the night, he wakes moaning and confused. Sometimes it is every ten minutes. I do know that last night he slept from around 4 - 6:30 with no wakings and yesterday he had some long chunks of sleep as well.

Allen told me a few hours ago that Joseph was actually awake for about 20 minutes today, which is MUCH longer than I saw him awake while I was there (usually less than a minute). During that time period he actually asked for a cheeseburger and took a bite once it was fetched for him. This morning he wanted to watch Shreck and also was asking for his Mimi (my Mom).

I think I speak for all of the family members who have had to drive back home and leave Joseph in saying that it was absolutely terrible to have to say goodbye and leave Allen and Gillian in Atlanta. Thankfully, Gill's Dad and my Mom are there with them now. I cannot express how much I wish we all lived in the same city. Anyway, we know they are surrounded with great support from their many friends there.

Please keep praying. Please keep checking this blog. Please keep leaving your encouraging comments.

At some point, when they are able, Allen and Gillian will take over this blog, but for now I will continue to update you all...

Jennifer

Thank you

I am at Allen & Gillian's house, so I thought I would upload these images of Joseph from their computer.

Allen came back to the house to rest tonight. Please pray that he can get some MUCH needed sleep. My Mom and I are staying here with him while Gillian is at the PICU with Lynn in Joseph's room. Please pray that Joseph can sleep tonight and will not be in pain.

My heart is heavy as I have to leave tomorrow and drive back to Memphis. I do not want to leave. However, I must return home. The plan is to keep at least one family member here with them and I suppose the family will just alternate who is here. I know my Mom is going to stay a few more days and possibly through the week. I myself plan to be back here as early as Thursday or Friday. Gill's Dad arrived today, coming as far away as Ireland to be with them.

Gillian told me earlier tonight how truly grateful she is for all of your prayers. Your comments are SO encouraging as well, not just for she and Allen to read, but also for the rest of the family. Lynn and I were sitting at two computers earlier this afternoon, each of us looking at the most recent comments and exclaiming with excitement over the comments, especially the ones from people we had not seen in ages. Knowing that prayers for Joseph are being lifted up across the globe is an amazing thing. Please continue in your fervent prayers.

Please continue to pray that God will intercede on Joseph's behalf and cure him of this tumor. Please pray for Holly, while she is with her Nana away from her parents, that she will have peace and joy.

Thank you, thank you, thank you for your love and support of this precious family. Even those of you who have only become acquainted with them through finding this blog - you are loving them by praying.

Also, thank you to the group of people here in Atlanta from Allen & Gill's church who came & cleaned and did yardwork. What a wonderful gift.

Jennifer

Saturday

This is Gillian. I have been reduced to a mess of tears reading all the comments posted on here from people we know and love and people who only know us through friends. It is truly overwhelming to hear of so many people praying and even fasting for our precious son. I cannot put into words the support and encouragement this brings us. Thank you, thank you, thank you. We just can't say it enough.
Here's a quick update:
Joseph is just finishing up his 2nd MRI. They do a post-op MRI to see what the tumor looks like now after surgery. I think this is just standard procedure. They won't know any more about what the tumor is until Wed. or Thurs. b/c they have to do numerous tests on it.
Joseph is recovering very well from surgery and was quickly bossing us around and being his passionate self, which was so wonderful to see. He is only awake for moments at a time due to the morphine and just the fatigue, but the moments he is awake he asks for mommy and daddy, his car, to take off the IV, to go home, etc. It breaks our heart to pieces to not be able to take him home, but the fact that he is talking to us, moving around, kicking, etc. is a very good thing.
His eyes look normal; there is no infection; his blood pressure/heart rate are back to normal; there is no swelling. Praise to God for that!
We will probably be here at least until Wed. or Thurs. They have not told us when we can expect to leave; I guess it will depend on the results of the pathology. We do appreciate visitors, but please try to not visit btn. 1-3 and after 7. Joseph has not slept well here and I really want him to get back to taking naps and going to bed at his normal time. But we do love seeing our friends so please feel free to come and visit a few minutes.
Allen and I are hanging in there. We both go through times where the tears just won't stop, and then there are moments of laughing and talking with friends where everything seems normal. I do know that if it weren't for the legions of people praying I would not be even able to type this. Allen and I both feel your prayers and have felt so strengthened and encouraged knowing so many people care. We are truly carried by your prayers, Joseph and Allen and I. Thank you all for the many ways you all are showing love to us--meals and food, toys, magazines, praying, fasting, calling, emailing. We are trusting that God is working all things for the good of those who love him, who are called according to His purpose. We love you all and covet all your prayers.