Monday, August 4, 2008

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.

25 comments:

Kate Etue said...

Gillian, I'm so glad to hear he's playing well (we had such a blast on Friday, Grey's still talking about Allen chasing them all around the house) but I hate to hear about these other developments. Just know we're praying for you guys and hoping for a miracle. Remember, with God nothing is impossible, even when all the evidence points to the negative.

John and Sue Burch said...

We read the blog whenever it is posted... thank you Google Reader!!! And continue to pray as you have asked. We are all learning along with you of God's care and faithfulness to His own. We praise Him for Joseph's sweet 'understanding' of what is happening to him and his playfulness. Asking God for a miracle and continued assurance of His love and presence with you all... John and Sue Burch

Tiffany said...

Our hearts are hoping right along with yours.
Praying -

Anonymous said...

What a beautiful and smart little boy; I can't ikmagine how difficult watching his partial facial paralysis is and it breaks my heart to hear that. The Booth boys continue to pray for a miracle and for God to continue to bestow strength for you all.
With much love,
Randi Booth

Courtney said...

Hey there. I just want to let you know how much your comments help others to better understand what you're going through and how better to pray for your needs. Whenever you're in Memphis, I am here to help in any way.

You're in my prayers.

Jana said...

Still praying!

Christy said...

No words. Love to you all.

kelly robinson said...

Praying, fasting and praying some more. Peace to you all.

Brea said...

We are praying for you.

trmills said...

We love you. Praying for strength in the day to day and for healing.

courtney said...

Always hoping and praying...

Sarah-Jane said...

hey Gill and Allen,
thanks for the post. I can't believe how much he knows and understands......i'm sure it is encouraging and heartbreaking all at once. It makes me want to cry and yell WHY???? I'm sure you've yelled it a billion times. we love you all and Bella and Eli are constantly praying for Joseph all the time. we can't wait to see you soon. Praying for Avastin to work.

Anonymous said...

We're praying for everything that you have requested. Love Martha and Karl

Anonymous said...

We're so sorry to hear about the paralysis in his face, Gil. Will continue praying for his healing, though. I am very grateful to hear of his courage and hope in the midst of it. We love you all very much. - scott and paige cunningham

LTT said...

Gill, Allen, Joe P and Holly
Love you and praying and thinking of you all tonight.

Lynn T said...

Post above is from me..Not sure why I randomly had a new username

Nana said...

Thank you Kate for your encouraging note.It is often at times like this that we rely on the body of Christ to be prayerful and hopeful for us.This scripture from Psalm 139:14, says "I will praise you,for I am fearfully and wonderfully made. .Marvellous are Your works.And that my soul knows full well .My frame was not hidden from You,when I was made in secret.And skillfully wrought in the lowest parts of the earth.Your eyes saw my substance,being yet unformed.And in Your book they were all written,The days fashioned for me.When as yet there were none of them"Verse 17 and verse 18 are beautiful and are in my heart for Joseph.Joe P is a trooper and Jesus is holding you close to His heart.Hoping and praying "Sleep sound in Jesus" love and hugs and kisses Nana and Grandad

Chloe said...

My heart is heavy thinking about you all. But also light when Joe shows such courage and limitless hope and faith in life. He is a treasure. Love Clo. X

Craig and Gwen said...

Praying - and sad.

Gwen

Anonymous said...

Praying for all.
love, Vann & Norma

Jody (atlanta) said...

Praying.....breaks me heart. I am praying for miracles and cannot imagine how hard as his parents to watch him struggle and change. Please know how much we love you. I so wish we could be there.....Love, Jody

Margaret said...

Oh, Gillian & Allen,
No one should ever have to face what you are going through. Prayers just don't feel like enough but that's all we have and we'll do the best we can with it. I can't speak to the quality of my prayers (although I do update them w. every blog, I am not nearly as well versed as so many of your incredible prayer warriors!), but I get an A for quantity because you are never out of my mind and heart.
Love and miss you all so much.

Anonymous said...

Praying for the miracle.

Catherine

Heinzfeet said...

Oh, how we pray for that miracle!

Nana said...

Gill I didnt read the Spurgeon devotional until just now.It is amazing ad very fitting.It is truly a great reminder to all of us.all you bloggers who did not read it go to the side of gillians blog and she has the link there.it will bless you.Gillian and Allen you guys are doing an amazing job under the most trying of circumstances.It blesses me everytime I see you interact with Joe P. and Holly.I will remind you of the scripture you painted for me when David was a baby.Isaiah"He tends his flock like a shepard:He gathers the lambs in His arms and carries them close to His heart;He gently leads those that have young" Joseph is safe in the arms of Jesus.We love you all tons and tons Nana and Grandad and Sam and Davey.Margaret your prayers are just as precious to Jesus as anyone elses thank you for praying keep it up.