Annelise enjoyed the sand and the water a lot more this year- we were so glad!!

my sweet boy!!

building castles and forts

Here's Annelise catching some rays! Ha! I think she'll be my beach-bum partner one day! ;)

One night we went go-cart racing. We all had a blast! Annelise cried when we left because she wanted to do it again. She's a thrill seeker!

Caleb and Daddy rode together; however, Caleb got to ride his own go-cart (a smaller version) as well- he was big stuff driving around the track!

Caleb wanted to do the rubber-band jumping thing- he was a little nervous but was glad he did it!

It was such a sweet family time at the beach (aka: the beep). Thank you, Lord for this gift.

Grace upon Grace,
Austin and Nicole

Good News

Hello friends,

Today we visited with the Oncologist to get the results of Caleb's scan and the news is good - there has been no change in his tumor since February. This news is of course quite a relief for us and we are so very grateful as we reflect on it. Our son is being sustained through this trial and we hope this news brings joy to your hearts as it does ours.

Our next date is August 9 when we see his eye doctor and then August 22 when we will visit with Endocrinology and potentially conduct more blood studies for hormone levels. The next MRI will be in three months.

We know we are not waking through this alone and we know we have a heavenly father who is intimately aware of this situation. Please join with us in thanksgiving for His continued blessings.

Thank you all so very much for your love, care and prayers.

Austin & Nicole

Highlights

First of all we want to say how truly encouraged our hearts were and are that so very many of you took the time to pray with us a couple of Sundays ago. We were humbled by those who gathered around us in our church body, and by those from Harpeth Hills and many others in the Nashville area! Wow! We wholeheartedly believe that God heard all of our fervent prayers for Caleb; we thank you from the bottom of our hearts for going to the Father on our behalf not only collectively that Sunday but all of the many times you have prayed for us over the years. What a gift!


To keep you updated, Caleb is having another MRI tomorrow Tuesday, July 19th. We then will find out the results on Wednesday. We will keep you posted.

Many have asked how we have been doing with all of this, and I thought I’d take a moment to share. I was singing last night to the kids the song, “I will Sing of the Mercies of the Lord Forever,” and it dawned on me how I truly wanted to sing to you of His mercies over the past couple of months. During this time we have heard news that we hoped we would never ever hear from any doctors at any time. It felt like a nightmare coming true- the nightmare in the back of our minds the past 4 and a half years. We have felt and still do feel fear, anxiety, and sadness, but I can honestly say that in the midst of these very strong emotions we don’t feel consumed or characterized by them. We know this strength is not of ourselves but from our heavenly Father, because we know there have been days we could literally be paralyzed in fear or swimming in our own tears. I have told several people that I have felt like I’m walking in some scary deep dark woods; however instead of panicking or being paralyzed in fear, I realize that I am not alone- that Christ is present. I still cannot see where I am going, and it feels really scary, but I know that He is with me and ultimately He is in control. That is an amazing feeling! The God of the heavens and earth is with me and at work in me- the Emmanuel, the Jehovah Shama! He is with Caleb and Austin and every single one of us- it’s “His incomparably great power that is at work within us who believe (Eph. 1:19,20)- the same amazing power that raised Christ from the dead! I was reminded of a verse from a friend- 2Cor. 4;8-9 “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” Paul was not consumed because he was being lifted up by God’s everlasting arms “for those who hope in the Lord will renew their strength…” Isaiah 40:31 We are experiencing Him in this way and we thank you for your prayers. We know that we are not the only ones walking through hard things, and we would absolutely love to pray for you. Please let us know how we might better do that.

We have truly been encouraged that God has delivered us today from having to take action through treatment at Vanderbilt. God has answered all of our and your prayers on that so far, and we are very grateful. I feel like there is more to share of the things he is teaching us and the prayers He's answering, but I will have to write more later. For now I'd like to share the highlights we've had in the midst of the storms over the past 2 months.God has been so good!


Here were are at our Adoption Yard Sale! We raised over $1000 dollars!! Wow! We think the Lord multiplied it before our eyes! Caleb sold lemonade for several hours and yelled, "Lemonade for sale! We're adopting!" from the top of his lungs!! ;) He kept asking why people were laughing at him! We long to know the child God has for us and look forward to bringing her home.


Here are all the kids helping out. Chase's girlfriend, Krystle, came up to help watch Annelise for the day. She was a tremendous blessing! Thank you again!!

Enjoying a day at the zoo.

Annelise turned 2 in June! We can't believe it! She is talking up a storm (putting 3-5 words together) and she makes us laugh every day! Some of our favorite things she is saying these days are: Whyee (why), LaLa (water), GiGi (her lovey), What do do daddy? (what are you doing daddy), framfreen (trampoline), Ah Ah (monkey).
She is taking a interest in accessories and jewelry lately. She puts on my bracelets one by one up past her elbow. She slips on my heals and surprisingly walks quite well in them!! She is also loving baby dolls. She bounces gently while holding one and says "Sh Sh Sh" in a rhythmic fashion to put the baby to sleep- it's precious!! I painted her toenails for the 1st time on her birthday- she was so excited. We have been eating her up lately!!Here she is celebrating her birthday at Ma's- she received all kinds of dress-up jewelry and loved it!

For her birthday we had a dance party/cookout at a nearby park. Austin dubbed a CD of our favorite dance music to play for everyone. Annelise loved it!

Dancing with Daddy

Here we are doing the YMCA song- all the kids joined in for some silly dancing.

make a wish!

Here she is modeling some of her snazzy gifts!

Annelise loves Miss Krystle! She gave Annelise the apron with her name on it- how sweet!

The next week Annelise and I had a couple of days without Caleb because he was enjoying VBS at my parents' church. We had some special moments together- it lightly rained one morning, and we had fun playing with her new umbrella and hat.

Moments before Annelise's birthday party, we took Caleb down to the river and baptized him. It was truly a beautiful, memorable moment I won't forget. I love the history behind baptism and the connection it brings to all believers. Christians have been baptized for two thousands years now- and many more Jews before them- repenting of their sins and getting themselves ready for the long-awaited Messiah. I can't imagine how beautiful it must have been to stand there on the edge of the river and see Jesus being baptized. What a sight! To Caleb: We are so very proud of you for taking this step of faith. We look forward to watching our Father transform you into His likeness with ever increasing glory...2Cor. 3:18

I also loved watching my amazing husband have the privilege of baptizing our 1st born. He is the most fabulous father!

What a moment!

Caleb said, "Whoa! That was cold!"
To see more pics of Caleb's baptism and Annelise's birthday, click here.

WE LOVE YOU!

Also in June we had the privilege of keeping the Kramer kids on and off for a week while their parents took their 1st of two trips over seas to bring home their adopted son. Timothy loved playing dress up with Caleb- he's a knight/superhero- makes sense to me! (I love Annelise in this cowboy hat and pistol! )

Stella loved the rocket. I couldn't get enough kisses from those adorable cheeks!

Caleb and Emily had a sleepover, and we took them to the opening night of Cars2!! They were thrilled and couldn't wait for it to begin! These two kids have been obsessed with Cars for years!! It was a fun night.

Also at the end of June Austin surprised me with tickets to the New Kids on the Block concert!! I was ecstatic!! When I was between the years of 10-13, I was a die-hard fan. It felt like being a kid again-Austin was so sweet to take me- he was one of just a few men in the arena with a gazillion 25-40 year olds!!


I sang the whole night from the top of my lungs! ;)

Another major event took place in the month of June...my nephew, David Grayson, was born on the 24th! It was such a special moment to be there with my family as the excitement rose with the anticipation of his arrival. 

These are the proud parents, Hunter and Leslie. He was a big boy- over 8 lbs with black hair and as cute as a button!

Here's Mom and Dad with them before Grayson arrived. They named him David which is Hunter's 1st name, my father's, and my grandfather's name. How special!

I can't believe my little brother is a daddy!!! Wow! It was fun chatting with Will T. in the waiting room- he always makes me laugh!

This is one of my favorites- a true, genuine grin on Annelise! She was in hog-heaven holding baby Grayson!

And lastly the 4th of July- we enjoyed two cookouts that weekend with lots of pics you can see here. We love you, friends! Thanks for being the hands and feet of Christ to us in these hard times in life.

They are growing up!

The 4th seems to come faster every year!

This is how Annelise watched the fireworks on the 4th- whenever she's a little nervous or scared, she gasps and covers her mouth- it's precious. Click here to see more 4th of July pictures.

Grace upon grace to you- Nicole

Test Update

Hello friends,

From our last post you will recall that we had another round of blood tests to confirm previous findings of elevated growth hormone levels in Caleb. We heard back from our doctors this week that while the levels were slightly lower than previously recorded his levels were still elevated above normal.

They ran another test on two different hormones that check for the onset of puberty at a chemical level. They ran this test not because he shows signs of puberty, but because studies show that if this tumor is behaving like it is expected there could be indications of early onset of puberty. We were saddened to find out that we also have this problem to deal with in Caleb. The levels of these hormones in his body were also elevated.

After chatting with the doctors they are still uncertain about the prognosis for Caleb though – in most circumstances you will have some physical complications to deal with before you resort to treatment. In Caleb’s case we simply don’t have any physical complications. In one conversation I was told that “Caleb really is in a very small percentage of patients – he does not have the physical complications that are typically present.” As scary as this sounds, I really do believe this is not an accident – that there are reasons beyond our understanding that Caleb has been insulated from the impact of his situation.

Because Caleb does not have physical complications – only bio chemical – the professional community is torn with how to move forward with him. There are known risks in both of the treatment options (Hormone Therapy & Chemo) – and there are known complications that will occur. Here you have a child who does not presently have complications and both options for treatment will create problems in his physical body. This conservative attitude of reservation is one that really gives us peace as we move forward, and were thankful to hear their struggle with this.

The next steps for Caleb will be that he will have another MRI at the end of July and he will have more blood work done in August with the present understanding that absent big changes we will do that every two months. The thought of putting him through this is very hard for us, but given the alternative we think it is the wisest decision that could be made at the moment.

We continue to look for ways to help his body win this fight, and we continue to seek your prayers for the healing of our son. We are scheduled to have a time of prayer for Caleb this Sunday 7/3/11 from 11:45 – 12:15pm at Blackman Middle School – our church meets at this school (www.fbcrc.org). We will have child care provided, and anyone who can make it is welcome to come seek the Lord for the healing that we truly believe He can provide.

If you cannot make it on Sunday but would like to join us in this time of prayer from afar here is what we will be asking for prayers with.

• That Caleb’s body will make war on the tumor and that it will be taken from him. It is known that these events do happen, and it has even been experienced by our medical team. We are asking that however God has made it so that our bodies can attack these things that are not supposed to be there will be activated in Caleb, and we will see a miracle take place. That Caleb will come through this struggle unscathed, whole and healthy.
• That Caleb’s vision will remain healthy. A great risk of this tumor is the loss of his vision. If there is vision loss it is unknown if it could be restored through therapy such as chemo. We are praying that this will not happen to Caleb, that his body will be protected from this risk.
• That Caleb will remain emotionally & socially healthy as he continues to learn more about his condition. He presently knows very little about what is going on. As he learns more there is the great likelihood that he will fear it or that he will see himself as “different” than his friends.
• That Caleb will not experience physical signs of early puberty. This will be a game changer for what needs to happen with regard to treatment. His body needs to hold off the hormones that are presently elevated so that changes do not begin before they should.
• That Caleb will not have long term physical complications from the elevated growth hormone levels in his body. There is the risk of developing pretty severe complications from prolonged elevation of growth hormone – we are praying that his body would either suppress the growth hormone or that it will remain unaffected by its elevation.
• That we as parents will be compassionate and understanding with our son as he faces lots of doctors, feels fear, gets poked on and sits in cold waiting rooms. That we will show him the love of Christ and help him experience his emotions in healthy ways.
• That we will make wise choices for his future. At some point we may have to make hard choices about his treatment, and we are asking that God will provide us with the wisdom we need to make the choice that is best for his future.
• That we will be united as partners in this struggle for our son’s health. The stress of the situation can create tension in our relationship. We are praying that our children would experience a peaceful home that is full of love and grace even in the middle of the hard things of life.
• That God would bring glory to himself in this process. That He would show his power through our son. That we would daily chose to place our faith and confidence in Him. That we would place our hope in him and not in a miracle – even as we pray for a miracle to occur.

It really is a huge blessing to have friends who care for us and are walking through this with us. Thank you for your encouraging words, prayers and support - you have been a very real blessing to our family.

Tests

Hey guys - just a quick note to let you know that today starting at 8:30 Caleb is having another round of blood tests to confirm the initial hormonal issues. He will have about five hours of blood tests conducted today so we would really appreciate your prayers. The test required fasting - something he is not a fan of - and it is just hard for a five year old to sit in a doctors office for five hours.

So - if you would pray that this would go well we would really appreciate it. We also continue to seek your prayers for healing for our son. The results of this test are significant because we will be making decisions based upon their findings. If these tests find the first test to be an anomaly that would be an amazing thing... which is not completely a foreign idea. We will post back once we know more - probably next week.

Thank you for your friendships.

Friends in Eastern Europe

We are so excited to be sending our dear friends off to Eastern Europe to meet their son for the first time. Derek and Karen are making their first of two trips starting tomorrow morning. They are adopting a beautiful baby boy that has captured their heart in many ways and we are thrilled to be walking through this with them.

If you are interested in following their journey you can do so here. To make it easy , there is a box on the blog to enter your email address. I know they would welcome your prayers for safe travels and open doors.

Caleb Update

Dear Friends,

We met this past Thursday with a Geneticist at Vanderbilt to have Caleb reviewed for a genetic condition called Neurofibromatosis. If he has this condition it will be helpful in describing his tumor – for possible treatment. In review of Caleb, the doctor was unable to identify Caleb as having NF and went so far as to say he does not believe he has NF as it is commonly seen in children. We have a blood test that is scheduled to be back on Thursday that will hopefully add confirmation to this clinical review.

The Geneticist did however present us with a third possible option for our next steps. He was able to locate two studies conducted on children who had similar circumstances including the tumor. This option involves treating Caleb with a synthetic form of a hormone that our body uses to regulate the production of growth hormone. There have been some theories that an abundance of growth hormone may contribute to the growth of optic pathway tumors (what Caleb has) and that if properly regulated we may be able to stop the progression of growth.


Treating with this hormone may then buy us two wins – it could stop the growth of the tumor and it could help his body better regulate growth hormone.

This week is going to bring some more tests to confirm the findings we are dealing with and more conversations between doctors regarding this possible alternative. Please pray for wisdom in these conversations, that fear will be bridled by risk and that the correct next steps can be determined.

Today's Meetings

Today we had meetings with Neurology and Oncology. These meetings were hard discussions to have. We have confirmed that what we knew on Monday is pretty much the direction they are going to advise. There are some variables still in the mix with regard to the genetic testing that is being conducted, but regardless of the outcome of that test there are no "good" options on the horizon (Chemo or Biopsy are the two options).

We did discuss the possibility of another round of waiting and evaluation, but that too has risks and complications we may encounter - so truly there are no good choices.

What we need most right now are your prayers for wisdom, peace and healing. We know there is a plan in these events, and we earnestly want to trust and rest in this, but we also confess this is a very hard place to be situated.

We thank each of you for your prayers and words of encouragement today.

Austin & Nicole

Tumor Review Board

Dear Friends,

In our last post we shared with you that Caleb would be having a test conducted by his Endocrinology doctor to check for proper pituitary function. Caleb did an excellent job during this test and we thank you for your prayers. The test results came back, and they didn’t contain good news for us.

The specific test conducted was designed to measure Human Growth Hormone levels as they respond to the “things” in our body that are supposed to suppress their production. The markers for these things in his blood were outside of the appropriate range for his age. It was discussed by his Endocrinology doctor that a likely cause of these imbalances was the growth very near the pituitary gland.

The next step was today – today there was a tumor board review for Caleb’s case. In these reviews a series of doctors review the most recent information and make decisions with regard to the plan of action.

I tried several times today to reach the Ophthalmologist, the Neuro-Surgeon and the Endocrinologist but for a series of reasons (all perfectly good) we were not able to get in touch with them. I was able to talk with the Neuro-Surgeon’s nurse and she gave me a very quick summary which included strong suggestion that either a biopsy or chemo would be the next steps.

For over four years now we have not had any considerations such as this that were so near to actuality – so these thoughts and possibilities have taken an emotional toll on us today. I want to repeat that I have not actually spoken to any of the doctors yet, and that I will try to get in touch with them again tomorrow for sure. Right now we are scheduled to meet with the Neuro-Surgeon on Wednesday at 2:00 and on Thursday with Genetics. I am hopeful that we will get clarification after these visits.

We whole-heartedly request your prayers for wisdom in our conversations, with our words and with what happens next. We want what is best for our son – no question about it - but we are also scared of the choices we will have to make for him. We don’t know anything for sure because we have not talked to the doctors, but the news that we do know has been deeply troubling for us today.

Thank you for your thoughts and prayers.

Adoption Yard Sale!

Hey everyone we just wanted to get the word out that we are having a last-minute yard sale at our house this weekend to raise money for our adoption of a baby girl from the Philippines! Many of you know, however some may not, that 3 years ago God laid it on our hearts to start the process of adoption. We decided on a country, chose two agencies and got accepted, and then felt the Lord lead us to having another child of our own. Our hearts have not stopped beating for the baby girl He has for us even as we have waited the past several years- we know His timing is perfect and have been trying to rest in that...

With the news of Caleb's tumor enhancement three months ago, we felt it wise to wait a bit longer. Even with thegood news we received last week, we still feel the need to hold off a bit longer as wewait for several other test results to come back here in the next month or so.

With all thatsaid…we decided at the last minute that while waiting we could still have ayard sale (we've been saving for years)! So, we are having a sale this Saturday, May 28^th!We wanted you to know for several reasons…we would love your prayers thatpeople would come out and buy; and prayers for strength- we areexhausted from just a crazy month- I told Austin last night, ”I’m feeling astired as a mom with a newborn baby!”

Also, if youhave items you would like to donate, we would love to have them! I know it’s last minute so no worries ifyou don’t have anything…but if you do, swing it by our house tomorrow day or night. We will take it!! And, lastly, we would love forany of you who can to drop by on Saturday to buy some lemonade from Caleb!!!!He is so excited to help raise money for the adoption! And, if you have anyyard-sale tips, would like to help out, or might like to entertain Annelise,we’d love to have you!!!!

For more info click this link http://goo.gl/8Oeh9

Thanks for your support!

On Mother's Day Annelise and Daddy painted a hand-print canvas to hang next to Caleb's in the kitchen. She had fun, and I will treasure it!

I think this picture is hilarious! Caleb received his medal for soccer last week- the team put their hands together and said, "Go Quick Silver" - their team name- Caleb no doubt will be in the pep club one day!! Ha!!

Hello Friends

Yesterday (Wednesday) was Caleb's MRI appointment. In our last visit (three months ago) the doctors saw slight "enhancement" in his tumor. It was not known if this enhancement was a possible sign that the tumor was going to grow or not, but they opted to bring him back after a short period to have another look.

We are so very happy to tell you that the tumor has not grown and there appears to be no further enhancement that can be seen in the scans! We are so very grateful that the news was good in that regard. Caleb was a trooper and was so brave throughout the entire day. We were able to see the Neurosurgeon on the same day - so this was another very real blessing.

Our next steps are that this Tuesday we will visit with Endocrinology where they will conduct a two hour test on Caleb to check for proper function of his pituitary gland. Please pray this day goes well because he will have to be laying down for two hours during this test and they will need to take blood several times from him. We would love prayers for peace - for us and him.

Thank you all for your love and care. There is much to be thankful for!