Praise report!

Sydney came through surgery just fine! Prayers were answered - Praise the Lord! She is doing well today. We are hoping to go home soon. She still has a lot of drainage so we will be here until her drain is removed. Thank you for all of your prayers!

Blessings,
Sandy

Surgery

Sydney will be having surgery to remove a portion of her tumor. It is referred to as debulking - basically they will be removing the outer portion of the tumor. This is being done at the request of the ortho surgeon in the event that he needs to perform the spinal surgery. This will give him more room to work with. Her surgery date is June 24th. For those of you that still keep up with us, your prayers are so appreciated!

Thanks and blessings,
Sandy

Update...

The appts. went better than we were expecting. Sydney does need surgery but because of her small size the surgeon would rather wait at least a while. First she will need to have the exterior portion of her tumor removed as it would be difficult to get around for her spinal surgery. This will not be a light undertaking as these tumors typically are very vascular meaning that very likely she will have a lot of bleeding. Secondly she will need to have her chest wall repaired( the CT surgeon would rather not do this until she turns 6). Currently Sydney's spinal curvature is 71 degrees. The ortho dr. would like to repeat her xray in 6 months. If the curvature reaches 80 degrees then she MUST have surgery REGARDLESS of the other 2 factors.

Again, we are praying for healing for Sydney. We are praying that her curvature will remain below 80 degrees giving her some time to have the other surgeries addressed.

Thank you so much for your prayers and comments.

Blessings,
Sandy

Please PRAY

The dreaded appt. is finally here. Tomorrow Sydney will have her pulmonary function tests, pulmonary follow up, and the consult with the ortho surgeon. Tomorrow night she will have her sleep study. The appt. with Ortho is at 3:15. I DREAD it SO BAD. I've been praying and praying. Please pray for everyone invloved tomorrow. Ultimately I pray for Sydney's healing. I'm also praying that what the surgeon recommends is God's will.

Blessings,
Sandy

Happy Birthday!

Here are some pictures even though they're over a month overdue....

 

 

 

 

Appt. date

Sydney has been scheduled for her consults(again). We head back on March 24th. She will have a pulmonary evaluation with lung function tests at 1PM, she will then see her ortho doctor at 3:10PM, and after all of that she will check in for her sleep study at 6PM.

Please keep Sydney and the rest of us in your prayers.

For now we are getting ready to celebrate her 5th birthday - she turns 5 on Feb.9th.

Blessings,
Sandy

Update...

Sydney's MRI was uneventful - thank God! BUT the tumor is still growing, not at an alarming rate but there has been growth with the last two MRIs, obviously this is not news that we were hoping for. Her scoliosis however is progressing at an alarming rate. Normal curvature of the spine should be 0, up to 15 degrees is still considered within normal limits. Sydney's XRay on Monday shows a curvature of 71 degrees. This is up from 55 degrees in August. We are now at a point that something MUST be done. We will see Ortho again in the coming weeks as well as pulmonary to evaluate lung function in preperation for surgery. The actual repair for scoliosis may not sound that bad to some of you but you must remember that this tumor is actually wrapped around her spine as well. This will NOT be a surgery to remove the tumor ONLY to repair the scoliosis. We've been told by so many different doctors that Sydney is NOT a candidate for surgery that obviously we have concerns.

We know that she is and has always been in God's hands. We know that he can get her through this surgery. Please pray for Sydney and EVERYONE involved in her surgery and care. It will not be a routine procedure. Maybe sometime I'll scan a picture of her Xrays and MRIs - when you see them it's just unbelievable.

Once surgery is over, we plan to start the new clinical drug trial - there has been enough growth to qualify for the study. We had planned on getting her signed up this week but that will be on hold for now. The hope of this drug is to halt tumor growth not to remove it.

Please pray........

Blessings,
Sandy

Sydney's MRI

Sydney's 6 month MRI is this Monday, January 26th (Chinese New Year of all days). Please pray that she does well with her anesthesia and obviously and most importantly that there have been no significant changes. She continues to do well which is a MIRACLE - Praise God!

She also has follow up appointments with both oncology and genetics. We have yet to hear anything about the possibility of repairing her chest wall.

Needless to say it will be a very tiring and stressful day. Please pray for us to be strong and have the faith we need.

If your just finding us, check here for a bit of info on Syd's diagnosis.

Blessings,
Sandy

And the nominees are......

My sweet friend Leslie has nominated me for The Lemonade Stand award! She seems to think that I have a good attitude? When my DH sees this he'll probably pass out - NO KIDDING! So anywho, I need to nominate some people as well. This was SO EASY! These are my favorite most inspiring blogs.

Linny - A Place Called Simplicity

Michelle - Where Laughter Lives

Angie - Bring The Rain


Thanks Leslie!

Merry Christmas!

The see everyone look here

Another year...

I can't believe how fast things really happen - today is our 2 year "gotcha" day for Sydney! I find myself reliving every moment spent in China at this time of year. It seems so long ago and at the same time just like yesterday ( I get the feeling that I typed the same thing last year).

Today we had the most beautiful snow! Sydney thinks it's pretty but she wants no part of being in the cold - NONE! So the other kids played and we made snow cream and hot chocolate! Dad fixed chinese food for supper and then we had cake and ice cream! I think she really enjoyed her special day, we sure did!

Sandy

the call....

What a special day - on November 20th, 2006 we recieved our highly anticipated call for TA! It seemed like such a LONG wait and now 2 years have passed in the blink of an eye.

the appt.

Well, we met with the CT surgeon at CCH and let me just say that he EXCEEDED ALL of our expectations! He answered more questions than all of her previous drs combined - well almost. He really seemed to care about Sydney which is such a blessing, so many times drs have started to discuss things right in front of her with no regard as to how it might make her feel.

So on to the visit. He said if the NF1 were not in the picture he WOULD recommend repairing her chest. Not only to help with the scoliosis but to give her heart and lung more room. But of course NF1 IS in the picture and the tumor is very large and involved. So he plans to discuss surgery with all of the other members of the NF team. It may or may not happen. So we still don't have an answer but we do have a dr that we TRUST and that is SO important. I don't know when this meeting will take place. In the meantime Sydney has been scheduled for her next MRI. That will be January 21st.

Thanks again for all of your prayers - please keep them coming.

Blessings,
Sandy

Mark your calendars

Sydney has an appt. with the CT surgeon at CCH Thursday, Nov.13th. This is to evaluate possibly repairing her concave chest in an effort to help reduce her scoliosis. This is NOT a consult to remove the tumor. All of the physicians at UK are in agreement that the risk of ANY kind of surgery would not outweigh any benefit. At this point I'm also in agreement with UK. She is just "perfect". And I don't want to jeopadize that in any way. Please keep her in your prayers. One of the docs there told me "God can fix what we can't". And although it's sad to know that they can't "fix" it, I'm so thankful that she at least has one doctor that still believes in miracles! I will update after Thursday.

Thanks and blessings,
Sandy

Please pray for Papa....

Please say a prayer for Leslie's dad.They have been through so much lately.

just too cute...

a close up of the "lion"

 

Happy Halloween!

 

And we're off....

to celebrate birthdays! Neil and I share a birthday - how cool is that! So we planned our Fall break so we could celebrate! We SO wanted to take a trip to Disney but it was just TOO last minute. We're hoping to go next year. Syd was a little disappointed that she didn't get to see the castle on the Mickey boat. So anyway, we're going to Gatlingburg for a few days! My MIL had lots of hotel points so we got 3 nights for FREE - SWEET!

Blessings and thanks for all the wonderful words of encouragement. I have truly felt your prayers.

Sandy

A flower for you...

 

to thank each and every one of you that has lifted Sydney up in prayer. I am so very grateful for each one of the comments. A few of you asked to post a link to the blog - please feel free to do so - we need all the prayers we can get. I realize that some of you are dealing with your own struggles, please know that I am now praying for you as well.

Please continue to pray for our sweet girl. And again, we are so grateful for your prayers.

Of course, a BIG THANK YOU to Leslie

Blessings,
Sandy

Do not be afraid, just believe and she will be healed.
Luke 8:50

This is who you're praying for....

This is our sweet girl, Sydney! You'd never know in a million years that anything could possibly be wrong. But Sydney has NF1 with a VERY large plexiform tumor. This tumor is around her aorta, her left lung, her trachea, and her spinal cord. She also has a pretty significant concave chest. There is no cure and the only treatment option available is surgery and she is NOT a candidate for surgery. It would be TOO risky for her. As you can see God already has his hand on her. Just look at her...oh my, she's just a doll! Thanks for stopping by and please add her to your prayers.

Blessings,
Sandy

 

 

 

The Pulmonary visit....

We met with the pediatric Pulmonologist today. His bedside manner was good. But he is a Dr. and when a Dr. with his expertice tells you that he's never seen a tumor like this then you realize all over again what a terrible diagnosis this really is. I'm tired and at a loss for words right now. They will have a meeting to discuss Sydney's case in the coming weeks but it is in his opinion that surgery to repair her chest would be too risky for her and could potentially cause more harm than good. So really nothing has changed, just the wording and bedside manner. Sydney continues to do well. I just can't help but to feel sorry for all of us right now. I know that I shouldn't do that - so please keep praying for all of us.....

Blessings,
Sandy

Mooncakes!

We celebrated this year's Moon Festival by making our own mooncakes! They turned out surpisingly well considering this was our 1st batch. Next year we might have to splurge on a nice mold.


soaking the beans

 

making the dough

 

yum!

 

the moon princess!

 

Friday favorites!

Sydney's school pictures!

 

 

 

 

Friday favorite!

just look at those eyes...

 

Here we go - AGAIN

Sydney's appt. with Peds Pulomonary is set. Depending on what his thoughts are, she will probably have a sleep study and then follow up with a CT surgeon. Any thoughts on Peds CT surgeons????? Advice is welcome and prayers are SO appreciated.

Sandy

roller coaster.....

that's what it feels like. We met with the ortho Dr. today and - well - I just don't know where to start????? He said he cannot imagine saying the things he said last year - WHAT?????? Basically we are sort of back at square one. He feels that maybe something could/should be done for the scoliosis. The 1st step is to get a Pulmonary consult and probably a sleep study to evaluate her lung function. The next step is to meet with a thoracic surgeon (we've also done this and he did not recommend surgery) the reason for this consult is to evaluate the possibility of repairing her concave chest. This would hopefully alleviate pressure from the lungs as well as the spine. These are things we were expecting to hear over a year ago. We're just clueless...............Please continue to pray for all of us as we move forward.

a change?

After a great follow up appt. a few weeks ago we have spoken with Sydney's Dr. and there has been a slight increase in her tumor. At 1st I was just devestated but Her WONDERFUL Dr. quickly talked me down. According to the MRI there have been no changes but a more indepth study reveals that the extreior portion of the tumor has increased slightly. She also had an xray that revealed scoliosis (we knew this already). Her Genetics Dr. has requested another consult with Ortho. This appt. is scheduled for August 15th. We met with Ortho last year and he made it VERY clear to us that there was NOTHING he could do for Sydney. But here we go again.....Please keep Sydney and our family in your prayers.

Thanks and blessings,
Sandy

No change.....

Sydney had her 6 month follow up July 11th and both MRIs showed no change from her previous scans! Praise God! She continues to do well and be symptom free - a miracle in itself.

Love,
Sandy

Wordless Wednesday!

Bittersweet....

That's the only way I know how to describe it. Well, here it is - the special announcement. Sydney has been granted a wish . Today was her wish day and she has wished for a trip on the Mickey boat, otherwise known as a Disney cruise! As great, wonderful, exciting, and totally awesome as it is to be granted a wish like this, I really wish that she did NOT qualify......But it is indeed a blessing. The proverbial "silver lining" and for that I am grateful. I'm overwhelmed at the moment because this brings us back to reality and how serious her disease really is. But I am truly excited for Sydney and this wonderful opportunity that she has.

Happy Birthday Sweet Girl!

PRAISE GOD!!!!!!

We heard from Sydney's Dr. a day early - her MRI remains UNCHANGED!!!!!!!!!! Her appt. will be rescheduled for late Feb. or early March. The new clinical trial might be available then. So today we celebrate! Thank you for your prayers!

Blessings,
Sandy, Chad, and kids

prayer request...

We have Sydney's follow up appt. this Thursday the 17th. We will get the results of her MRI. I'm telling myself that no news is good news. Please pray that that is indeed true. I was telling Chad the other day that Sydney is already a miracle. The size and involvement of the tumor is just mind boggling. Thanks.

Love,
Sandy

Tinker Bling...

another fun challenge over at Loving Lydia. This is from last February, we need to update the wardrobe!

family fun foto challenge...

then

now

what a difference a year makes!

go visit loving lydia to participate

waiting...

Sydney had an uneventful MRI. Praise God! She didn't have any problems at all. Now we just have to wait to get the results, we go back for the follow up visit on the 17th. Please keep praying.

Merry Christmas!

This was Sydney's 2nd Christmas at home! Unbelievable...last year was really a blur since we came home from China on the 23rd. This year will be very memorable! Sydney was delighted by all of the Christmas fun, not to mention ALL of the great presents! There is nothing like Christmas morning...it's such a joy to see their faces light up.

Tomorrow Sydney goes to Cincinatti for her follow up MRI, PLEASE pray that everything goes well.

Happy Gotcha Day!

One year! I can't believe it! We celebrated today with Chinese food (what else!) and chocolate cake! What a year it's been for us...so many ups and downs. Thank God for the ups! We are blessed beyond belief. Why God has entrusted this sweet girl to us, I have no idea. Sydney is a treasure that's for sure!

Thinking of Mama...

I can't help but think of Mama today. Tonight would have been her last night with Sydney, I'm sure it must have been so difficult for her. Sydney had been with her since she was about 8 weeks old. I will be forever grateful for Mama...

Remembering...

One year ago today we were on our way to China! It's hard to believe. Here are a few pictures from the first few (of MANY) flights. This time last year we were waiting to board our flight to Beijing. The Chicago airport with 3 kids, Uncle Will, the "expectant" parents, and TOO MUCH luggage! We were a sight to see! What an adventure.