A Promise to Joseph

Here is a video of Allen and his friend John Moessner singing the song Allen wrote for Joseph. They are both wonderfully talented musicians, and I am not at all biased in saying it is the most beautiful song ever. I almost had to threaten Allen to get him to sing it at the Memorial/Funeral...so you can all thank me for persuading him (with a little help from Sarah-Jane). And thank you, John, for joining Allen in making it even more beautiful. Al wrote it several weeks ago, and the first time I heard it I knew he had to sing it at Joseph's funeral, whenever that would be. It turns out it was much sooner than I expected. Here are the words:

A Promise to Joseph

I can't stop the rain from falling
It's been raining for so long
I can't take your pain away
Or find what's right inside the wrong

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

I can't stop the night from coming
Or turn the darkness into light
There's so much I cannot do for you
But I can give you the strength to fight

But take my hand, we'll go through this together
And I can help you to stand
I don't know what tomorrow will bring us
But you'll know where I am

There is one who can do all things
Can stop the rain and end the night
He'll bring you peace and restoration
And turn this wrong into a beautiful right

So take His hand, you'll walk with Him together
Before His throne you will stand
We'll be fine with the peace He will bring us
And I'll know where you are

Joseph's Memorial

Picture on Program drawn by Aunt Jennifer

Joseph's visitation lasted every bit of four hours. We saw so many old and new friends and people who only knew him from the blog. Many from Atlanta made the trip as well as friends from across the country and lots of family from overseas. It was overwhelming. While it was draining, it was also greatly encouraging to see how Joseph's short life had touched so many people.

The funeral was such a beautiful service. At the beginning of the service we were treated to some video of Joseph being his wild, funny, sweet self. We sang a few hymns and heard some great music. One of Gillian's sister's friend knows Natalie Grant who wrote the song Held that has meant so much to Gill; and she was able to be here and sang it for us. It was an amazing moment. We heard from Aunt Jennifer, Uncle Matt B., and Uncle Sam as they told stories about Joseph and shared their thoughts and their pain. Then I shared a few thoughts and played a song that I wrote for Joseph over the past few weeks. Since Gill usually shares her thoughts, I'm going to just post what I said for those who couldn't be there:

Thank you all so much for coming. Joseph would have loved seeing all of these people together at one time. He was definitely a people person. He always had to be with one of us all the time, until we started making him have “room time” a few months ago so that he would learn to entertain himself at least a little. But there is no doubt that he was happiest when he was around people that he loved and I can only imagine his face to see all of his friends and relatives together in one building.

Way back last year a few weeks before Joseph’s original diagnosis, our good friends the Slotkins had to watch their son Luke die in their arms. I was talking with BJ sometime after and trying to put myself in his shoes and all I could say was that he was handling it unbelievably well and that God would never let that happen to me because I couldn’t handle it half as well as he did. I said that I would probably in anger chuck all of my beliefs in the goodness of God and would turn away from Him. Now that we’ve gone through so much with Joseph, I tell people that it’s not that I haven’t given up on God, but that He hasn’t given up on me. He won’t let me go. Every time I am angry beyond control at Him, He refuses to leave me alone. We definitely struggle with believing in God’s goodness. I now feel that the phrase God is good all the time, and all the time God is good has to be chanted over and over and over again until it’s driven in your head. God is good, it’s just that our understanding of what is good is so limited. Another phrase that I have repeatedly repeated is that He is God and I am not. He is God and I am not.

Throughout all of this past year Gillian and I have seen and felt the body of Christ supporting us through physical needs like meals and presents and cards, but especially through prayer. There is no way that we could express adequate thanks for everything that everyone has done. Gillian and I also want to thank our families who have helped us in so many countless ways. From free babysitting from all four grandparents, to housing from Jennifer and Matt and the Taaffes, but mainly for just being around for Joseph and helping his time here on earth even that much sweeter.

Now about the boy, cause that’s why we’re here. I want to tell just a few of our favorite stories about him. My new favorite story of all time actually happened last week. Our friends from Atlanta the Slotkins came up with Joe’s best buddy Logan for a weekend visit. Joseph was so excited to see him. Anyways, on Sunday before they left all three of the kids were playing in the play room. Holly snatched a toy away from Logan and he retaliated by pushing her while trying to get it back. Joseph didn’t see that Holly started it and even though he could barely walk, he marched over to him and just let him have one. Of course we don’t teach out children to hit, but seeing him want to defend his sister was so sweet and shows so much about him. He was passionate and fiercely loyal. He loved his sister so much even though they didn’t get along all of the time.

Joseph had so many trips and adventures during his last few months. We went to Disney world, Florida a couple of times, and we tried to do just about everything that we thought would be fun for him. But I noticed on all these trips that he was actually more excited to go home than he was during the trip. He loved being at home and he loved the normal day to day life. All he wanted was Mommy, Daddy, and Holly. There’s a lot that I have learned from him and his life, but I keep coming back to this lesson. We should all take the greatest joy in our day to day living and just being surrounded by the people we love.

Gillian and Holly and I and the rest of our families are hurting and missing him so much. I will continue to miss him until I see him again in heaven. But although our pain is real and seems unbearable, we have tremendous peace knowing that he is no longer suffering, that he has a new body that is tumor free, that he is at this moment in heaven being held by his eternal Father. And though we don’t have answers for the questions of why this happened, we know that God is God and we are not and that he is good all the time.

Anyways, thanks to all those who made such an effort to be there for us this weekend. We are truly grateful to have such a strong group of friends and family that are supporting us. We are indeed hurting and strugling to make sense of life now. Please continue to pray for us and for Holly.

Funeral Plans

Just a quick note to tell you about Joseph's memorial and visitation. The visitation will be on Sunday from 4-8 at Christ Community Church in Franklin. The Funeral will be at the same church on Monday at 10 am. If you need directions click here.

We appreciate and are overwhelmed by all the support we are receiving. Thanks for your continued prayers for us and for Holly and the extended family.

Held

4 years was too little. We let him go. We had no sudden healing. To think that providence would take a child from his mother while she prays is appalling. You know the rest of the words. They have been resounding in my head for the past few weeks. I feel the Lord gave me that song as a comfort but also a gentle preparation for the future. Sometimes as I listened I would just weep, other times feel immense joy and peace. Now I just feel sadness. Sadness at death and loss and that we will miss him so much it hurts. I already do miss him...his sweet personality, his great love, energy, radiance. I truly do feel special that God chose me to be his mommy.

I have always felt an impulse to tell Joseph how proud I am of him. When he was born and I got to hold him for the first time, those were the words that kept rolling off my lips. "I'm so proud of you, Joseph. You did such a good job." It felt a little strange to me, but I felt like the words were not really coming from me...that God wanted me to say this to Joseph. Even as he grew up, I always sensed that he loved encouragement and it spoke volumes of love to him, more than a hug or a kiss. He longed to please, to do the right thing, to make mommy and daddy happy. Today as he was holding on to life with a thread, I sensed I needed to tell him what a good job he was doing. "I love you, Joseph. You are doing so great. I am so proud of you. Just relax and go to Jesus. Mommy is here with you." I think he was holding on, maybe not sure if he was failing us somehow by letting go. But the hospice nurse said they can hear everything, so I was more sure I wanted to tell him how great he was doing. Allen sang him his favorite song, "The fox song," (by Nickel Creek) then I told him his final "Target story" and he went to his final rest as I was telling him that story. As gruelling and heartbreaking as his last few hours were, those final moments were nice and I did feel he was at peace and went very peacefully.

Now we are left with the pain, the memories, the knowledge that there will be no soccer games, no first day of school, no more cars and trains strewn all over the house. Oh, how I will miss that. How I will miss being needed. He has been my job, my responsibility for the last four years. My life has been devoted to raising him, loving him, teaching him, being there for him, protecting him. Even after he died and he was lying back there on our bed, I felt the need to be with him as others said goodbyes. He always wanted me with him and I felt I needed to protect him and make sure he was all right with people coming in. I feel like my other half is gone. He has been my constant companion. I always felt like he needed me so much, and sometimes I wished he didn't. Now I realize I need him too.

I am very thankful for Holly. She is a bundle of joy and delight, and has kept me laughing and dancing in the midst of this intense pain. God in His wisdom gave us Holly at just the right time, and she is His gift to us that I know will keep us from falling into despair. These verses have been on my heart last night and today: "Behold I am with you always, even unto the end of the age," and John 10:27-29: "My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one can snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father's hand." This last verse, all I could remember was that "no one can snatch them out of my hand," so I looked it up and found the whole passage so comforting. At a time where my feelings betray me, God's Word is giving us great hope.

We are still working on the details of Joseph's memorial and funeral, but we are hoping it will work out to do a memorial on Sunday afternoon/evening and have the funeral on Monday. We will definitely post when we know for sure. Thank you all for your kind comments...they truly have been a great comfort and encouragement.

The End

Joseph died today at around 2:00 in our house. We rushed home this morning not knowing if we were going to make it home before it happened, but we made it in time for most of the family to see him one last time. He passed in our bed and was not in any pain at all.

We don't have any plans yet for the funeral, but will let you know later. Thanks to all for your many prayers. Sweet Joseph is now at peace.

More Sad News

Joseph continued to decline today. His MRI today showed that not only was the tumor back, but it was four times as large as it was after the surgery last month. He also had significant hydrocephalus (swelling) from the tumor blocking the drainage of the spinal fluid from his brain; but the MRI also showed evidence of some herniation (which basically means that the pressure was so high, it forced the brain into areas where it shouldn't be). With all of this going on, they said that they do not expect him to live more than a few days. We figured that he was having some tumor regrowth and knew that these new symptoms were alarming, but we were not prepared to hear this news.

So, after talking with a quality of life doctor, we all decided that the best course of action for Joseph is to take him home, make him as comfortable as possible, and keep him pain free. There are some things that they could do to relieve the pressure, and we could start the new chemo, but they used the term "days" to describe how much time those measures would buy us. We definitely feel that he has suffered enough and to put him through more surgeries or even another IV stick would be cruel.

We are really grateful we got to meet with this new "quality of life" doctor. He is a neuro-oncologist who is starting up programs in hospitals to help families adjust to life with a very sick child. Speaking with him today was very informative and helpful and gave us a lot of peace about the immediate future. He was able to read his MRI scan and tell us exactly what was going on, but he was also very emotionally supportive and encouraging to us as parents. I had prayed this morning that God would send us someone to help us know how to help Joseph in these last days, and this man was a definite answer to that prayer.

We are spending the night here in Memphis with Jennifer and Matt and then we'll be leaving in the morning for Nashville where Joseph will get Hospice care at our house. He isn't in constant pain, but he can get pretty severe headaches, so we'll be giving him medicine whenever he needs it. He is very lethargic and has been sleeping most of the past two days.

Thank you everyone for the birthday wishes-- the only times that he was happy and smiling today was when he was opening presents and talking about opening presents. Please keep praying for us: that Joseph would be pain free, that we would have strength to get through this, that we would feel peace about everything, and that our final days together would be special.

Not doing too well

Okay, so I lied in the last post. Here's a quick update. Yesterday joseph continued to grow weaker and since we were in the car most of the time we didn't really notice it that much. Early in the morning he woke up with a severe headache and vomited. Then all day today he was unable to stand or even sit up. He seems to not be able to move his right side of his body. He did great at St. Jude but that's probably due to just being weak; he wasn't able to give his usual effort in fighting the needle. He only had a PET scan today and they couldn't really tell us anything about what's going on. The MRI tomorrow will tell more, but we kind of know what's going on based on his symptoms. Hopefully after the MRI, we'll be able to start Avastin on Thursday and Friday and then come home.

He is very frustrated and down about not being able to move. Pretty much the only thing that is keeping him somewhat happy is that tomorrow is his birthday and we have told him about the many presents waiting for him. Other than the headaches, he isn't in any pain; but we can't give him any medicine to help him understand what's happening or make it easier. Obviously, we are also pretty depressed about his quick deterioration as well.

We'll try to update again tomorrow after the MRI. Please keep praying for him.

Veggies Videos

Blogger wasn't loading the videos on the last post, but it's working now. Here is Joseph meeting the real Larry. His paralyzed side is facing the camera, but you can still see a huge smile on the other side. The second one is the kids playing various whistles and instruments in the music room.

Also, we probably won't post until we get back from Memphis on Thursday, so be praying for our visit. We're going to try and take Holly because both she and joseph want her to go. He has a bunch of scans and tests and then hopefully he'll get his first avastin treatment IV. Honestly it didn't feel like we were going to make it to this point and getting here seems like a mini-goal accomplished. I think what we are mostly hoping for is that the avastin/cpt-11 shrinks whatever is there that is causing the symptoms. He now has to be holding hands with someone to walk without falling and he has started having some shaking in his arms when he uses them. It would be great to have some improvements for a change instead of steady worsenings. Above all the hope is that avastin will kill the tumor, but like Gillian said a few posts ago, we are being realistic and know that this is not the expected outcome.

We really do appreciate and depend on all your support. Thanks for keeping us in your prayers.

Veggie Tales

We love Bob the Tomato!

Joseph practicing his art
The "real" Larry the Cucumber!
Joseph painting Joseph
Joseph riding his Lightning
Making music

Yesterday we got to go on a tour of the Big Idea studios where they make all the Veggie Tales videos and movies. We got to meet the the man behind the voice of Larry the Cucumber which startled and confused the kids (but once he held up a toy Larry they all got it and thought it was amazing). Our friends from Atlanta the Slotkins are here for the weekend, so Joe's best friend Yogi got to come too. They did some painting on the computer, played with some of the instruments in the music room, and Joseph had his picture drawn by one of the artists (It was such a cool office, by the way...musical instruments, art, big fluffy Bob the Tomatoes to sit on, computers you can paint on. Come on, can this really be called work?) They had a great time and we are very thankful to Melissa and everyone at Big Idea for letting us come and interrupt the day. Everyone there knew about Joe and his story and were very gracious and sweet to him. He was treated like a little king.

At the end of the tour, Joseph started crying because he thought he was going to a Veggie Tales store where he could pick out a toy (I don't think he quite fully grasped the idea of a studio and that Larry and Bob aren't real talking Veggies). He was almost at tantrum level when I told him we could go to a store and buy something afterwards. Then as we were about to leave, they took us back to the lobby where there were three baskets filled with toys and books and movies for each of the kids. They were all so excited and happy. Thank you, Big Idea, for a wonderful morning!!

Disappointment with God

Holly is Daddy's girl.

Holly and Bella enjoying the great outdoors
Joseph has discovered online shopping!

Bella and Joseph, overjoyed to see each other
Aunt Sarah-Jane and Nana playing beauty shop with Holly



These are some picture from our weekend with Bella and my very dear and sweet sis, Sarah-Jane. As you can see, Holly loved having a girl to play with and I think it was a good distraction from all that is going on with Joseph (and I loved having my sister there with me). Allen had a night away with his Dad and brothers to a lakehouse, where they enjoyed boating and fishing. We were all very glad to have him home since Joseph had a rough weekend.

Right now Joseph is in much better spirits and his usual smile is back on his face much more often. I don't know if it was tiredness or just not feeling good, but this weekend he was very grumpy and clingy and just physically not doing well. He didn't leave my side for more than a few seconds at a time, until Daddy came home. Then he was happy again and left for Target with him with no problems leaving me. Go figure! I think his turn in mood resulted from a very good nap on Sunday, just starting to feel better overall, and excitement at Daddy being home.

He is still taking steroids, although we are trying for a third time to wean him off....very slowly.

Joseph is continuing to press on, trying to run and play, but then getting discouraged when he realizes he is way off balance and really needs a hand to hold in order to stay up. While it is encouraging to see he desires to play, it is very painful to not be able to make it all better for him. To watch him watch others play and do the things he used to be able to do with ease is torture.

Someone recently asked me, "Do you feel like you are sitting on a ticking time bomb?" My thought was, "No, it feels like someone is slowly ripping me apart." I hope that isn't too graphic, but I can think of no other way to adequately describe it.

We waffle between hope and despair almost hourly, depending on Joseph's symptoms and mood. I want to hope, hope, hope that Avastin works or that God steps in to save the day miraculously, but then sometimes it just seems impossible.

Aunt Sarah-Jane read to us from our "Read Aloud Bible Stories" book at dinner the other night. The story was about Jesus healing the blind and making lame people walk. Joseph was listening so intently and soaking up the hope that was in those stories. I thought to myself that I often put so much hope in a new drug or the right treatment, when for God it would be so easy to say, "Be healed." Why he does for some people and doesn't for others is a painful mystery.

I admit as I've gotten older I have become more cynical and skeptical than I'd like to admit. It is so hard to see such pain, evil, and disappointment and believe in a good God. A friend of mine gave me the book "Disappointment with God" (by Philip Yancey) about a year before we found out about Joseph's tumor. I found the book so respectful and sensitive to questioning people, and the best part was that he didn't have all the answers. But I loved the way he searched the scriptures and the heart of God to try to make sense of the evil and suffering we experience.

One of the questions in the book was "Why didn't Jesus heal ALL the people he encountered?" I believe he referenced a story where Jesus healed a man at a pool, but didn't heal all the rest. How could he single out that one man and not have compassion on all the men/women? Well, that got me thinking, "Yeah, why not?" Yancey notes that God is always more concerned with our spiritual healing than our physical healing. In the Old Testament he gave many signs and wonders and miracles and it still didn't produce the faith and belief he desired. In the end we will all die, and at that point it won't matter how healthy our bodies are but whether we have responded in faith to the love of Jesus.

I am definitely not doing justice to this wonderful book, and am probably butchering the examples, so I would recommend just reading it.

I am sorry this entry is so "all over the place" but I have to write everything in the small time slots I have where I am not needed....so there you have it. Thanks for listening. Thanks for praying and walking this journey with us.

A little better

Today was a better day for Joseph. No vomiting but otherwise the same as before. We had a good outing to Target (or Tarbucks as I now call it, b/c most of the Targets around here also have a Starbucks--heaven!!), where he actually found a car he didn't have. What joy was his! He held that car all day and took it with him to bed. But tomorrow will be another day and another quest for a new train or car. We fear we are creating quite a consumer, but truly these trips to Target are the only things that get him excited and smiling and laughing. He really doesn't feel well enough to run around and play a lot, so we give him all the Target and Moe's his heart desires.
Tomorrow we are expecting a visit from cousin Bella and that has gotten him very excited. He could barely go to sleep tonight. It was like Christmas for him! They play so well together and she likes to do stationary play like coloring and play-doh, which I think he finds comforting. He can't wait to do some painting tomorrow morning. I'll post the pictures if they turn out to be the Eiffel Tower or something this time.
Holly is doing well and is being very nurturing and kind to Joseph. She has a sixth sense with him and seems to know when he isn't feeling well before we even tell her. She got to spend the night with Nana and Grandad last night, which I think was a nice break for her. She loves to swim over there and play dolls and have tea parties with Nana. And of course she doesn't mind being the center of attention. We hate that she is having to go through all this as well, but we are blessed with wonderful family who lavish her with love and attention.
Thank you, all you prayer warriors, for lifting us up in prayer.

Please Pray

Joseph was not feeling well this morning and vomited about 5 times. We started giving him Zofran (an anti-nausea medicine) which kept him feeling good the rest of the day. Yesterday was also the last day of steroids and tonight he started acting weird again--really wobbly and uncoordinated and complaining more of headaches, so we put him back on steroids to help him walk better and function by himself.
We asked our doctor if we could move up the beginning date for Avastin, but the doctors at St. Jude feel strongly that it is not safe to do it until 6 wks post-operation (because Avastin can interfere with wound healing).
So, we are left with him basically falling apart before our eyes and there is nothing we can do. We thought about taking him for a CT scan, but even if they found something different they couldn't treat him until August 19. We will keep him home and hope that steroids help his symptoms. We don't know if the vomiting was a bug or if it is from the tumor, but we will keep giving him Zofran if he continues feeling sick.
We are frustrated that we can't do anything, but this is where the reality of this tumor hits home--it is not humanly curable and even doing Avastin is not a guaranteed "cure," as much as we hope it will be (and of course we still hope and pray for complete healing). So, please just pray Joseph will keep being in good spirits and that all of us will have patience and wisdom in taking care of him. I feel like we are definitely back in survival mode, just trying to brace ourselves for the next hurdle, hoping things don't get worse. We feel so helpless in this situation but we know we serve a God who is able to meet all our needs. He always has for our family and we know He always will. Thank you all for praying for us, calling and emailing, and serving us in so many ways.
Love, Allen and Gillian

Picture Update

The last few weeks have had some fun memories, despite the worries we are having with his physical symptoms. Here are a few photos with friends and family.

Painting, an ice cream party with Mimi, figuring out the skateboarder track with Grandad, and Joe and Holly with their friend Grey, taking refuge on the couch from the monster.

Joseph has really started to enjoy painting. I really think he was just swirling the paint brush around, but don't you think these pictures look like a dinosaur and a car? (his two favorite things!) Of course I'm not at all biased, but he must have a gift.

Etoposide Finished

Joseph finished his two weeks of Etoposide without any side effects other than fatigue. We're glad to be done with it. Now we're waiting two more weeks before we go back to Memphis for a bunch of scans and begin the Avastin/CPT-11 treatment. Again, the new treatment will be given IV every two weeks in Memphis, so we'll be taking lots of trips to St. Jude in the future.

Joseph's facial symptoms have gotten quite worse over the past week and now the left side of his face is totally paralyzed. He always had some mild loss of function on that side since the surgery in December, and he lost all sensation on that side; but now nothing is moving and it distorts his speech, interferes with simple tasks like drinking water, and wipes half of his beautiful smile away. It probably is harder for us to watch than it is for him, but today he was frustrated and sad about not being able to move his mouth to drink a juice box. He is amazing though, how accepting he is of his limitations and how quickly he adjusts to each new challenge. He has started coughing slightly after drinking which is probably due to loss of sensation in his mouth and uncoordinated swallowing. We found that if he tilts his head down he can swallow without coughing and now he does it everytime he drinks without thinking about it. All of this is probably due to the residual tumor around his brainstem that must be growing or infiltrating further. The worst part is that there isn't really anything we can do except to hope that the new treatment will kill and shrink the tumor and restore function.

We're still weaning him off steroids, and he should be completely done in three days. So far he has done great with the wean and only has occasional headaches. He has had more energy and desires to play and run (with assistance) which is good to see.

It has been unbelievably hard to watch him lose function. Our focus is on making him as comfortable as possible with the changes and trying to explain to him what's happening as best as we can. He understands more than we give him credit for. We have had to start giving Holly "medicine" when Joseph gets his; she gets a syringe full of water. The other day Joseph was getting medicine and Holly asked for her medicine. Joseph said, "No Holly, I have to take medicine because I have a boo-boo in my head. Right Daddy?" It was so sad to hear that, but at the same time it was encouraging to realize that he knows what's going on. He knows that all of his symptoms are because of the tumor.

Please continue to pray that the steroid wean would be successful, that the new treatment would be effective and have few side-effects, that Joseph would continue to be strong and accepting of his circumstances, that we would have the strength to endure through this, and for a miracle.

** I added a link to a daily online devotional by Charles Spurgeon on the right of the screen. Today's reading is amazing and so fitting.