Happy News!

Well, it seems like this is the first time I have been able to report really good news. The surgery was very quick (I think less than two hours), so I feared that it was like last time where they got in there and realized they couldn't tell brain tissue from tumor. So, I was bracing myself to start crying again but I ended up hugging our surgeon, who was very sweet and gave me a nice big hug right back. He said they were able to get "quite a lot out" but the part around the brain stem stayed in there. So, they were able to relieve the pressure in his brain and even free the facial nerve that was wrapped up in the tumor, which is truly amazing. This is Gillian reporting, so in my layman's interpretation I might be messing things up...but I think it was the nerve that affected the movement on the left side of his face.
Immediately after surgery we went down to the ICU and Joseph's condition was astounding. He was talking and asking for me and Daddy, for a juice box, to sit up etc. We gave him a cup with a straw to drink some juice, but he immediately told us, "That's not a juice box!" I've never been so happy to hear him bossing us around again. Soon, we had his orange juice AND his juice box and he sat up several times to take sips. I was really amazed b/c he didn't seem this good after the last surgery. It also appeared to me that his left eye was shutting more in sync with his right eye, so maybe that is related to the nerve they were able to free up. Up till now his left eye was not responding the same as his right eye, which was worrisome since he needs to be able to protect his eye.
It has been wonderful to have our family here. Holly is having fun with her cousin in Memphis and Mimi is here taking care of her while we stay in the hospital. We are so relieved that the surgery went so well. Thank you all for praying for us and for Joseph. This little boy must be the most prayed for boy in the world! Please keep praying for his healing, and that he will be more comfortable and not in pain. It is great that he is expressing his needs, but it is really heart-breaking to not be able to make the pain go away. Overall, we are so happy with the surgery and with the amazing care he has received here so far. All of our doctors and nurses have been really amazing.
Ksusha, thank you for that sweet story of your friend's tumor. Keep praying for a miracle for Joseph. Love to all of you!

Surgery Tomorrow

Well, after a wonderful respite between hospital stays we are heading back to Memphis. We have very heavy hearts going back there, knowing the tough road we have ahead of us. First the surgery, which is always scary, then the recovery, which is very long and heart-breaking. Then we have to start radiation very soon after (probably about 2 weeks after surgery). Please pray for his surgery tomorrow morning, which will begin early and probably take several hours again:

1. That God would give the surgeon wisdom and precision and safety
2. That there would be mimimal negative effects on Joseph's nerves from the surgery
3. That they would be able to take a lot of the tumor out safely
4. That Joseph would recover as well as he did from the last surgery and be in mimimal pain

Our parents are coming up with us for moral support and to help take care of Holly, which is a huge blessing. We really do miss our Atlanta friends a lot--so it will be nice to have friendly faces with us.
Joseph did have a nice Christmas, with periods where he was laughing hysterically at Uncle Sam, or with his cousins Bella, Eli, and Will at a Barney video. Of course, he wasn't running around outside like he normally would, but he was walking around and sitting at the table for meals. At Mimi's house, he did run around from monster Big Daddy, holding onto Mimi's hands, then bopped him on the head with cardboard poles. That was a highlight for sure. Seeing him take his job so seriously to slay the monster was hilarious. It is very sad for Allen and I to see him so limited in his play, where usually he is so wild and free. We have faith he will get back there soon, and we are praying that all this treatment will help him do that.
Thank you all for continuing to pray and lift us up during such a hard time. I have to agree with Aunt Jennifer that I think God does give us more than we can handle so that the body of Christ can work together and support each other. It is so obvious to us we cannot do this alone and we are so thankful for everyone who is fighting for us in prayer.

St. Jude's

Well, we've arrived in Memphis and are currently staying at the Grizzly House. This is the place for people who just arrived through one week. After that week we would move to the Ronald McDonald house, but as everyone knows, Jennifer and Matt are going to let us use their house. This week has been a continuation of the whirlwind that Gill mentioned. In fact it has picked up pace. To be included in this study, they have to repeat a bunch of the studies that were already done. This is frustrating to go through again especially to Joseph who is fighting every step of the way. He has calmed down somewhat since our arrival.
Yesterday he had an IV placed and got some lab work done before an afternoon MRI of his brain and spine. We went back to our room but our oncologist called and said that they discussed his case at the tumor board (which is a meeting of oncologists, neurosurgeons, and some others involved in his case) and felt like there was an increase in the size of his ventricles in his brain which is a sign of increased intracranial pressure. You can look all this up if you want more details, but basically the tumor is in a place that can block the drainage of his spinal fluid from his brain. He then told us that we could not leave the campus for Christmas and that their opinion was that he needed a second surgery to relieve the pressure and try to resect more of the tumor. This obviously upset us greatly. We met with the neurosurgeon here who was patient with our many questions and concerns. He basically said that we could either have a second surgery where they would remove as much as they could, put in a shunt (which is a tube from the brain that drains the fluid), or start radiation and just watch him closely. His recommendation was for repeat surgery. He did however say that he was not as concerned about any short term effects developing and that we could go back to Nashville for Christmas.
I was really upset with the idea of more surgery especially since last time they stopped because they couldn't tell tumor from brain tissue. But remembering back, our surgeon in Atlanta said that there was a portion of the tumor that they could, if needed to relieve pressure, go back and take out but he left it because they weren't sure of the pathology at the time. And the surgeon here is pretty confident that they will be able to take out more of it this time but again, they won't be able to take it all out and they are not going to try to do that because it is too dangerous. So it looks like we'll be leaving tomorrow, and when we come back wednesday or thursday, we'll be going to the main Children's hospital here in Memphis for more surgery. This will push back the start date of his radiation 2-4 weeks for yet another recovery.
Yesterday was a rough day. One of the roughest we've had. But after talking with the surgeon and hearing that we will be able to go back for Christmas our moods have improved significantly. Despite not wanting to go see doctors, Joe is walking more and has times where he is sweet, smiling, and being very funny. His new favorite activity is to set up all the medicine bottles in a tower and then knocking it over with his new cars. He is back on the steroids, so he is moody and not sleeping well again, and he has an insatiable appetite for McNuggets and fries.
Please keep praying for him and for us, that we will have a good time over Christmas seeing everyone and Holly again, that we will be prepared for another surgery with another PICU stay and for the recovery, that Joe will adjust to having people poke and prod him, and that Gill and I will communicate well. Thanks everyone for all that you've done for us. We miss all our atlanta people badly, but we're looking forward to Christmas with all the family.

A place to stay!

Our family is amazing. Allen's sister Jennifer and her husband Matt have offered to give us their house in Memphis and take their one year old to stay with Matt's family. Of course, we were reluctant to push them out of their house, but if you know Jennifer, if she has put her mind to something it is not easy to persuade her. So, we are so thankful and happy to have a house of our own for our stay in Memphis, and we will be close to the hospital which is wonderful. Thank you Jennifer and Matt and Matt's parents! ("thank you" doesn't seem adequate for such a huge gift!)
Yesterday afternoon and this morning have been very good with Joseph. He has been generally happy and wanting to play and sit up. This is a change from his sleepy and generally grumpy disposition the few days before that. Please pray that he continues to want to play and get moving and that he will allow other people to love him and do things for him. He is completely attached to me and is having a hard time even allowing Daddy to do things for him, which is really unusual. Thank you for all your encouraging posts and prayers and cards and packages and meals. And thanks, Tracey, for getting my sister here on your skymiles. It is so nice to have S.J. here. She even made Joseph laugh a couple of times!

Memphis, here we come

Whirlwind is the only word I can use to describe our life right now. We talked to St. Jude's Hospital and they wanted us there Sunday to start a "work-up." That was just too soon for us to get everything together, so we are going to go on Tuesday, hopefully leave for a couple days at Christmas, then start treatment the day after Christmas. This is way sooner than I had imagined, but it is good to get started sooner than later. The great thing is that St. Jude's will fly Joe and I there so he doesn't have to endure a 7 hr. car ride. We are still working on lodging. They have a Ronald McDonald House, which has one room for the four of us, common areas and shared kitchens. This would be free, but we are worried about all of our ability to sleep in the same room. So, the next few days will be spent trying to pack up our belongings for about 8 wks. Please pray that we remember everything and that God would be our peace in the midst of our "whirlwind." Merry Christmas to all of you. We love you!

Treatment Plans

Hello Everyone-
This is Allen updating. We met with our neurooncologist today and we have pretty much decided to participate in a trial at St. Jude's in Memphis. We are still waiting to hear the exact details from St. Jude's about when we would start and housing and some other details. With Joseph's particular tumor radiation is the only proven treatment, but this trial uses a drug called Tarceva to augment the radiation and help shrink/kill the tumor. There are other drugs that have been used with radiation that have not shown proven benefit, but hopefully this one will. Our doc recommended using some kind of chemotherapy and we decided that this would be the best agent given it's lower side-effects and better overall tolerability. So we don't know when we would start, probably soon after Christmas, but they may want us there before to get things moving. So to all family and friends around the memphis area, we will probably be seeing you soon. Otherwise, Joseph seemed to be progressing fine according to the doctor and should be much better when he is totally off of his steroid taper.
As Gill wroter earlier, we are struggling to get Joe motivated to get off the couch and playing and walking. Target only has so many cars. Please continue to pray that he will want to play and walk. I think he gets discouraged knowing that he can't do what he used to do so easily. The picture above is from Joseph's trip to target where he walked around the aisle (barefoot of course) to pick out a car.
Holly has been entertained by her Nana most of the week going on fun walks and trips to the store and such. She tries to play nurse to Joe feeding (sometimes force-feeding) him goldfish and bringing him juices and patting his head. Thanks to Lynn for visiting and to Nana who has been here this whole week keeping our house clean and Holly entertained. And thanks so much to Beth and BJ for letting them stay at your house. Also thanks to those who have offered up their houses for our extended family. There was an overwhelming response and it means a lot to us.
Again, I can't express how much it means to us that there are so many people praying for Joe P. We thank you so much for your prayers, comments, letters, gifts, meals, houses, emails, phone calls, and drop by's. We are mostly worn out and worn down but knowing that we have a strong community behind us is unbelievably encouraging. We will keep you updated.

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.

Resting

As I sit here typing, Jospeh's still sweet body rests a few feet from me. Allen is *trying* to sleep on the tiny couch in the room, but his 6'5" body doesn't quite fit. Gillian is (thankfully) still asleep at home. Allen refuses to leave Joseph's side but has agreed to sleep as long as someone stays awake in the room.

The plan is to alternate shifts so that he can get some much needed sleep. As I mentioned, the nurse has to come in and check Joseph's eyes and other vitals every hour, so its quite the disturbance to his rest. And if any of us need rest, it is definitely Joseph.

I ask that you pray for hope and rest for Allen and Gillian. I ask that you pray that our heavy hearts find respite. I ask that you pray for joy in the midst of this horrindus situation. I ask that you pray for little Joseph as he is confused and in pain.

Looking at my precious nephew in a sea of cords and gadgets coming out of his body is heartbreaking. As Matt just reminded me on the phone, Joseph is in God's hands and God is with him right here in this room. We have to trust that.

Jennifer

Another message from Allen

I am with Allen & Joseph. Joseph is currently resting/stirring a bit.

Allen & Gillian are reading your comments and there is even a computer right here in Joseph's room, thus the update. Thank you all for your encouraging words.

Here is the email Allen sent out moments ago:

"Friends and Family-As Jennifer has posted at http://www.prayforjoseph.blogspot.com/, Joseph hascome out of surgery and is in the PICU sleeping a lot with lots of newIVs and monitors. The surgery did not go as planned as they couldonly remove about 1/3rd of the tumor. It was difficult to distinguishthe tumor tissue from the normal brainstem tissue. So initialpathology was inconclusive and we have to wait until Tuesday orWednesday for the final pathology to come back. But it looks likeit's either an astrocytoma, an ependymoma, or something weird andrandom. Depending on what it is, he will either need to go back tosurgery to try to remove all that they can, or we will get set up withchemo or radiation therapy as indicated. An astrocytoma cannot besurgically removed.Once again we are amazed at the amount of support we have received.Please continue to pray for him and for us. The hardest part (if youknow Joe then you will appreciate it) is that he has to sit still inbed with lots of stuff hooked up to him. Please pray that he will becalm and let every test that needs to be done happen. Please alsopray that somehow the pathology will come back with good news (the twopossibilities before are not good). Please also pray that Gillian andI can keep it together enough to be there for him and help calm himdown.Thanks to all who are praying and who have emailed, dropped by, orcalled. For the future to any who would like to visit, we are in thePICU and we cannot have food in the room. Also only two people can bein the room at the same time, so you probably won't get to see him,but we love seeing people in the waiting room. A lot of our family ishere and they enjoy company in the waiting room too.Thanks so much and keep praying,Allen, Gillian, Joe, and Holly"

Afternoon update from Jennifer...

I am here in the PICU at the Children's hospital at Emory. I arrived about an hour after Allen and Gillian recieved the news that the surgery did not go as well as they expected it to. As Matt mentioned in the previous blog, they could only remove about 1/3 of the tumor before they began to have a hard time deciphering the tumor from the actual brain tissue. This is of course, not what everyone had hoped for.

I saw Joseph and he looks so much better than I had expected him to look. He is recovering well and is very alert, asking for his cars and drinks of water. One of the first things he said to Gillian was "take this off me!" as he held up his hand which is punctured by the IV. If you have spent any time with Joseph, you know that he is strong willed and spirited. I know this is working to his advantage for his recovery.

The doctors are keeping him medicated with morphine, but it is just enough to keep the pain down so he can rest and not be knocked out completely. Over the next 24 hours, he will be woken on the hour to be checked. They have to shine a flashlight in both eyes, which is a bit uncomfortable for him.

Tomorrow morning, another MRI will be performed on the tumor. I will let you all know any news that follows the MRI. He will be in recovery here in the PICU for the next couple of days and then be transfered back to a room in the main hospital.

I sat with Gillian in the waiting area as she wrote down the following prayer requests on a post-it note before heading off for some sleep. Her requests are as follows:

1. Pray that there would be no infection from the surgery.

2. Pray that Joseph would be calm and able to sleep/rest.

3. Pray that the doctors can figure out what exactly the tumor is and that it is benign.

4. Pray that Allen and Gillian can rest and be strong for Joe.

5. Pray that they can rest in Jesus' love.

Allen is currently resting with Joseph in the room in the PICU. Gillian has gone home for the first time to rest. They have slept so little. I urge you to pray for them and for their spirits following the bad news about the surgery.

I cannot imagine going through this without knowing the hope that Jesus offers us. That hope is carrying us all through this. Thank you for your prayers. And thank you Holly, for the treats and the ride for Gillian.

PS - For those of you having trouble posting because you're not registered, you should now be able to do so.

Surgery complete

The biopsy wrapped up just a little while ago. Unfortunately they were only able to remove about 1/3 of the tumor. Joseph is in recovery now and doing alright. Jennifer is about 45 mintues outside of ATL, so we should know more once she gets there.

Matt

Surgery has begun...

Hey all.  This is Matt, Jen's husband.  She is on the road to Atlanta this morning.  Please pray for safe travels for her this morning as she goes to be with her family.

Joseph is currently in surgery.  It began at approximately 8am EST, and it will last anywhere from 6-14 hours.  Please continue to pray for the surgeons, that they will have steady hands, as well as wisdom as to what to remove and what not to remove.  Also pray for peace for Allen & Gillian, as they helplessly wait on the results of the surgery.

I will do my best to keep this updated while Jennifer is unable to.

We love you, Joe P.

Uncle Matt

A message from Allen

Allen sent an email out earlier which gives a few more details & requests than I have offered you:


"Most of you have heard by now, but yesterday we took Joseph to
Egleston Children's hospital to get an MRI of his head because of some
changes that we were noticing. The MRI showed a mass in the back of
his brain on the brainstem compressing some of the nerves. They
admitted us to the hospital for further tests and for surgery tomorrow
(11/30). An MRI today did not show any spread of the tumor to the
spinal column which is good news. He does have some deafness in his
left ear which may or maynot be permanent. Overall he has not enjoyed
his stay here (except for all the toys and presents that people keep
bringing) and has not slept much at all. Gillian is doing great
except for not sleeping, and our families have come down to help with
Holly.

Tomorrow's surgery is the most important part of his overall treatment
and prognosis. They do not know what the tumor is and will not know
for sure until the pathology has been read which won't be until next
week. So the key is to remove as much as possible no matter what kind
of tumor it is. The surgery could last anywhere between 6-14 hours
and he will go to the PICU for a couple of days afterwards. Then he
will need lots of rehabilitation.

We have been overwhelmed by all the calls and emails and people
telling us that people are asking or praying about Joe, and we ask
that all of you continue to pray for him especially tomorrow and pray
that the tumor will be easily and completely removed without any
complications. Thank you all so much for keeping us in your prayers
and for visiting/calling/emailing."

Where we are

I am Jennifer, Joseph's aunt & sister to his dad Allen. I have decided to start this blog for all of the many friends and family members who care so much for Allen & Gillian. I do not want to use last names at this public blog, so let's respect that when we all leave comments. And it is so encouraging to read the comments that have been left on my personal blog which has hosted the details of Joseph's dilemma since it began to unfold yesterday.

What is Joseph's dilemma? Yesterday, an MRI showed a tumor on the stem of his brain. The tumor is in a very delicate spot and surgery is being performed tomorrow (Friday). What I have been told is that they will extract as much of the tumor as possible to be biopsied. Sometime midweek next week, the results should be in. The doctors have been realistic with Allen & Gillian, and told them that the possibility that this tumor is malignant is high and at the best, 50/50.

Joseph has suffered hearing loss and some vision loss, which we hope and pray is temporary. He is just 3 years old and of course, longing to get out of the bed and play, as any boy his age would be.

Many of you have asked me what led up to having Joseph tested. It started several weeks ago when Joseph began to tilt his head to the side a lot. A visit to his Pediatrician produced no alarm in the doctor. Then, earlier this week, Joseph began falling. Another visit to his doctor secured an appointment with an Opthamologist as his Pediatrician felt it to be a visual disturbance. Before seeing the Opthamologist, Allen had his suspicions and after talking with some of the doctors where he is in residency at Emory in Pediatrics, they decided to bring him in for the MRI yesterday morning. And of course what followed was the earth shattering news that their child had a brain tumor and it could be malignant...

There are some specific things I would ask that you pray for Joseph and our family tonight. First, that Joseph can have a peaceful night in his hospital room. Last night was not good and he needs rest and comfort. Secondly, I ask that you pray for skill and wisdom to be with the doctors tomorrow as they perform delicate risky surgery on Joseph's brain to remove as much of this horrid tumor as possible. Third, I ask that you pray for the agonizing 8-15 hours that the family will have to wait for news during the surgery. Sitting for that long without your baby while he undergoes a very serious and delicate surgery has got to be heart wrenching.

I am heading down to Atlanta in the morning. I will try and keep this blog updated as much as possible and I will most likely have my husband log on and and give you all the latest news.

Thank you for all of your support, concern, and mostly - your prayers.