Holly "babying" the puppy.
Joseph holding the puppies from next door.
Joseph trying to keep Aunt Jennifer from leaving by sitting on her.
This is a picture of Joseph enjoying all his new Veggie Tale stuff. Thanks, Melissa and Big Idea for sending Joe this huge box of DVDs, CDs, toys, poster, etc. His eyes were as big as saucers when he first saw the box filled with stuff for him!
Uncle Sam and Grandad playing trains with Joe.
I hope these captions match up with the right pictures. If not, I'm sorry--hopefully you can figure it out. :)
Joe overall is doing well. He is starting to get nauseous from the radiation and is not eating or drinking much. He has plenty of extra weight from his steroid days, but they want him to be getting plenty of calories every day to help him stay strong and tolerate the treatment well. The other day we had to go in for some IV fluids because he was vomiting and not eating or drinking well. That was no fun (although Joe did get to sit in a recliner chair and watch "Little Mermaid" while the fluid went in) to do at the end of a busy day. So, please pray that he will get his appetite back and that he will take his medicines willingly. That has been a battle the last few days; he has started really putting up a fight. It is hard enough to have to give him so much medicine, but spitting it out and screaming really makes it tough.
He is playing and otherwise acting like his normal self; his walking has gotten very steady and he is much more out of his shell. He actually wanted to go to St. Judes this morning and looks forward to seeing "Dr. Nick" and playing in the waiting areas with all the toys. Allen has been pretty sick with a bad cold, but he is finally starting to feel a little better today. We are headed to Nashville this weekend to celebrate Holly's 2nd birthday. It will be wonderful to have a little break and celebrate with family and friends.
Thursday, January 31, 2008
Posted by Allen and Gillian at 2:35 PM
Monday, January 28, 2008
Well, I have procrastinated writing on the blog. I haven't forgotten, and Joseph is not doing badly, and we aren't really that busy. I just don't know what to write. We are thrilled with his progress. He is sleeping well, playing, laughing, resuming normal 3 yr. old activities and generally being his old self again. It is an answer to prayer and a real joy to see. I just have so many mixed emotions and thoughts it is hard to really enjoy this without fear and doubt creeping in. I finally had to have a talk with God about this, about why this is happening, how are we supposed to deal with this, how could he take our precious son? When I have some quiet moments I feel like he brought several verses to mind:
"Do not be anxious about anything, but in everything, through prayer and petition, with thanksgiving, present your requests to God, and the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus."
I realized that God doesn't say you will get what you want in this verse, but that he promises his peace. I think that is enough for me.
Then another verse was:
"I know whom I have believed and am persuaded that He is able to take that which I've entrusted unto him against that day."
In this verse I was reminded that we have entrusted Joseph to Jesus, and He will take care of him no matter what the earthly outcome is.
The next verse is more of a story...it's about Jesus's followers asking about a man born blind, and they are wondering, "Whose sin made this man blind?" Well, here is the exact scripture: (John 9)
His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him.
We have to do the works of the one who sent me while it is day. Night is coming when no one can work.
While I am in the world, I am the light of the world."
When he had said this, he spat on the ground and made clay with the saliva, and smeared the clay on his eyes,
and said to him, "Go wash 3 in the Pool of Siloam" (which means Sent). So he went and washed, and came back able to see.
This one gave me a glimmer of hope.
The last verse is:
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight."
This verse reminded me not to put too much stock in my own reasoning and predictions (which lately have been pretty pessimistic) or even in others' reasoning or statistics, but to trust that God has the power and wisdom to do what He thinks best for Joseph and for all involved.
I write all this because honestly, Allen and I are sad a lot of the time, worried, heartsick, fearful, etc... my words would probably just make you depressed. But, God is faithful, and his words are true no matter how we are feeling. And they are a lot more hopeful and certain and powerful.
Thank you all for contintuing to pray for us. We will post more pictures soon...Joseph got a stylish new haircut this weekend and had a lot of fun around town so we snapped lots of shots. Oh, and Holly got some new bows to match her red shirts (she has decided that jeans and red shirts are IT). Now tech-unsavvy parents have to figure out how to post them.
Posted by Allen and Gillian at 10:31 PM
Monday, January 21, 2008
Posted by Allen and Gillian at 1:07 PM
Sunday, January 20, 2008
I'm happy to report more fun and laughing days with Joseph. He has become obsessed with this little light-up gun that shoots foam discs at us (Thanks, Nana!!). He becomes absolutely delirious with joy while playing this game (we call it shooter). At first, he just wanted to shoot Mimi over and over again, but last night he starting running around the house from her, which was so great to see. Overall, he is acting much more like his goofy self and is so cheerful and energetic again. He even went down the slide at the zoo playground (right after I wrote he hadn't played on a playground yet!). He is off the steroids and is sleeping through the night again and taking a nap. It feels so good to have that normalized again. Those steroids are no picnic, let me tell ya (just take my word--don't try them on your kids).
We went to see the Peabody ducks last night, which was not the leisurely visit we expected. We got there 15 minutes early and the little fountain and red carpet were completely surrounded by eager children and parents. We finally squeezed in and got to see the ducks but then we were told to move back so the ducks could exit...well, of course no-one wanted to move back, Joseph got claustrophic and Holly started throwing herself down on the floor screaming. So, we got out of there with both kids screaming and found an ice cream shop, which made everyone happy again. We were told later that the ducks are not usually such an attraction, but there was a big basketball game on later so everyone came to see the ducks first. So, we're going to try again on a weekday and hope for a calmer visit.
Today we will probably try the museum here, which is amazing and has a real car inside and a fire truck. Holly and Joe both love it. Memphis has some great activities for kids and Jennifer's house is at the most 10 minutes from everything. The museum is 5 minutes as is the zoo.
Joseph is starting to get a rash on his face from the Tarceva (which is one of the side effects). We were actually hoping he would get it b/c it is supposed to mean the drug is being effective. It can be very uncomfortable so they will give us medication to relieve any pain. Right now he doesn't notice it--it just looks like a little acne.
Holly is back with us and Joseph was so excited to see her. She was thrilled to see him but especially the dogs. She is good b/c she reminds me to change their water and give them food. She has a special bond with them. Oh, and I have to mention that Holly has started to remind me to pray for Joseph (she must have gotten into the secret network of children who are banding together to pray). When I put her to bed she will say "Amen?" which means "Let's pray." Then, if I forget to pray for Joseph (see, I'm not such a great parent) she will say, "Pray, Jusha?" (Joseph). Then she says a big "Amen!" afterwards. It is so sweet to see such a little child have faith. Thank you for praying for us and all your encouraging comments. We love reading them all.
Posted by Allen and Gillian at 11:49 AM
Tuesday, January 15, 2008
Despite all the bad news we have been getting about Joseph's tumor, he himself seems to be doing better every day. He is starting to wrestle with Daddy again, yell with joy over his trains crashing into each other, even walking and running on his own. He still doesn't want to play on a playground but I'm hoping we can change his mind on that one.
Today he had a full morning of appointments, the last of which was his radiation. Allen took him and I stayed home for the first time. He did fine at his appointments then they met Aunt Jen and Winnie Kate for lunch at Moe's. He came home and played trains, then he and Daddy wrestled and played hide and seek with me (they hid under the covers and I pretended to be shocked and awed each time they re-appeared). Next, we had an outing to Kroger where he picked out some new cars, then we went to see "The Pirates Who Don't Do Anything."
Did you notice there was no nap in this day? Well, after the movie we were walking outside and he noticed it was dark outside. This is when I realized how tired he was...he starting bawling crying that it was night time and didn't want to leave the theater. I think he was sad the day was over. It was one of the best days he has had in a while. As he has tapered off his steroids his mood and temperament have become sweeter and calmer. He has one more dose of steroids to take and then he will be off them completely (after almost two months of being on them). His appetite is more normal and he is sleeping much much better. Praise God for that!
We are being well taken care of here in Memphis, too. Today a sweet lady who I've never met dropped off boxes and boxes of food and household supplies from Sam's. We were overwhelmed with such generosity. We are also receiving four meals a week from Aunt Jennifer's friends. It is amazing to me the love and support we are receiving from perfect strangers. It is a true testimony to the power of God's love. It compels us to do outlandish things. Thank you all the Memphis people who are welcoming us and feeding us making us feel so loved.
Posted by Allen and Gillian at 10:09 PM
Friday, January 11, 2008
Quick update on the past two days. Joseph has started his radiation and is doing well. He has also started his chemo which is a little difficult to schedule because he has to have three hours without food. And he has to be without food for eight hours before radiation because he has to be knocked out for it. This is difficult for adults let alone a three year old whose appetite is already voracious due to steroids. The good news is that he is just a few days away from being completely tapered off his steroids, so very soon he will be down to his Tarceva (the chemo/biologic agent) and his anti-nausea medicine (he gets this during radiation). The radiation procedure is very quick, but because he cannot still completely still for 15 minutes he has to be put to sleep every day for it. They give him some Versed (sp?), which makes him sleepy and happy (and then they put him to sleep). This is really quite hard for us b/c after he gets the versed and before he is conked out he starts to act like his old self--silly, confident, funny, flirting with the nurses, teasing Mommy and Daddy, etc. It is a glimpse into his beautiful little personality that we all know and love. Ever since his first surgery and all the hospital visits and medicines he has to take he has become much more subdued and quiet, so his personality is a lot different now. We hope and pray that once some of the fear has subsided he will get back to being his old self.
He is already getting more comfortable at St. Judes, starting to play at the play tables in the waiting areas (at first he only wanted to sit in the wagon, or lie down in it and go to sleep). He goes to Occupational Therapy and he has shocked us by LOVING that; he pulls me down the corridor to go b/c he can't get there fast enough. I have learned that even a 2 year old can use scissors (something I never thought to give my kids), so Joe and I have been working on that at home. I'm still not sure I want to give them to Holly. I'll just trust the OT that she could do it. He basically draws lines with paint or crayons, plays with putty, strings beads, etc. It is to make sure he keeps his fine motor skills and stays on track with kids his age. He also does physical therapy, which he also enjoys. At first he would not participate in ANYTHING, so the fact that he will talk to these people and do what they are asking is huge.
I have also become a little more comfortable there and have ventured even to speak with other parents. It is neat to talk and share and hear what other people have been through. At first I was just getting my bearings, figuring out where everything was and how the place worked. I feel like we have become part of a club with very rare members and nobody wants to be a member. But it helps to know others are making it and how they do it. I know we couldn't make it without the many many prayers that are holding us up while we are on wobbly feet. Sometimes I will find myself singing a hymn of praise and I will think to myself, "Someone must be praying for me b/c I certainly don't feel like praising right now!" But then I am reminded of God's amazing presence and how it can be felt even through the darkest days and deepest pain, which I'm sure many of you can attest to.
In other news, Joseph (for the very first time EVER) went poopy on the potty today. I have never been so proud!! You would have thought he discovered electricity, my excitement level was so high. He has been potty trained (for pee pee) for over 5 months, but he absolutely refused to do number 2 on the potty. But, somehow Allen (who can get Joseph to do things I can't dream of) motivated him with a new car (which of course I've tried) and he did it, twice! Other good news is that Joseph is Daddy's boy again. He would not let me out of his sight for many weeks, but now he is starting to let Daddy back in and they are best buds again. This is a great joy for all of us, and it relieves a lot of pressure from me to do and be everything for him.
Okay, so this is not a "quick" update at all. Allen started this and I finished it, so I take responsibility for boring you all with toilet news. Please keep praying that this radiation will shrink the tumor and that the Tarceva will be very effective in stopping its growth. We are using the best that science has to offer but trusting God to make it work.
Posted by Allen and Gillian at 9:23 PM
Wednesday, January 9, 2008
Well, we take one step forward and then two steps back. Today we got the news that the pathology from his second surgery which looked at more of the tumor showed that the tumor is stage IV not stage III as thought earlier. A stage IV glioblastoma is called glioblastoma multiforme or GBM. Basically this means that the tumor is more aggressive and faster growing than thought. There is some subjectivity in reading pathology from slides and our radiation oncologist even said we could line up ten pathologist and six would say one thing and four would say another, but they compared this slide with the one from the first surgery and feel that the first diagnosis was correct, but that the new sample shows more signs of a stage IV. GBM is much more common in adults and is rare in kids, and again the location of this kind of tumor in the posterior fossa is rarer. You can look up pediatric GBM here: http://www.childrenshospital.org/az/Site962/mainpageS962P0.html for all the details.
Basically this changes his overall prognosis but not the treatment plans. He will still start radiation tomorrow and it will last for 6-7 weeks. Again there is no known chemo that works for GBM and Joe will start his experimental Tarceva tomorrow as well. He will be sedated for the radiation every day, but the actual radiation only takes a few minutes.
It seems like we can't even start to get a grasp of our situation before the situation changes. We continue to need your prayers and support. Please specifically pray that the radiation treatments will go smoothly and that Joe will not have bad side effects from it, that he will continue to progress in his physical therapy, that he and Holly would sleep at night, and that Gillian and I would communicate well. It helps us to know that there are so many out there praying for us and continuing to have hope.
Wednesday, January 2, 2008
Well, we are all moved in to Aunt Jennifer and Uncle Matt's house. We are so thankful for the huge sacrifice they have made to let us stay in their cozy house. Holly has extra friends in their two dogs, who are the best dogs I know of. They are so content and rarely bark at all, which is good for a household that needs sleep. :) Holly wakes up and immediately wants to play with the dogs or go outside to play with them when they are outside, which is not much since it is frigid here in Memphis.
We came home from the hospital on New Year's Eve day, but Allen ended up taking Joseph back to the hospital that very night since he threw up five times that evening. He ended up being fine; we think it was due to taking his medicine on an empty stomach. But poor Allen didn't sleep much that night, and Joseph had to be admitted again and sleep back in the hospital. But he handled going back there surprisingly well. It is amazing to see his sweet accepting spirit in all the pain he is enduring. It is encouraging but also a little heart-breaking to see him get used to his condition.
But, his condition is definitely much better than after the previous surgery. He is much more enthusiastic about playing, listening to stories told by Nana (or should I say Guido?) We have all adopted Car Movie names--Joseph is Lighning, I am Sally, Allen is Sheriff and little Holly is Mack (appointed by Joe P.). I think he has gotten really tired of TV b/c he never wants it on and now wants stories all the time. It is stretching our imagination a bit, but that is a good thing. He also seems to be a lot more comfortable and doesn't want to be lying down all the time. A major highlight so far was seeing him riding around the house on his new Thomas the Train riding toy last night. His balance also seems a lot better--not perfect, but much better than before this surgery. His legs need some strengthening, so hopefully continued activity and physical therapy will help that.
Tomorrow we have a day full of appointments at St. Jude's. Our first few days there a couple of weeks ago were pretty hard on Joe. He just wanted to lie down in the wagon and woulnd't talk or participate in any of the "tests" (hearing, physical therapy, etc.). Please, please pray that he would be calm tomorrow and God would just enable him to not be scared and get through all the appointments with mimimal screaming and crying, etc. He is not allowed to eat all morning due to sedation so that should be an added trial to his good mood. So, obviously we need a lot of supernatural strength tomorrow, as we do every day. It was so encouraging to see all of our prayers answered with "yes" after the last surgery. God has been so good and faithful to meet all our needs; it is just a constant battle to not be consumed with worry over every little thing with Joseph. So, please keep praying for us, especially all you little ones!
Posted by Allen and Gillian at 8:47 PM