Yesterday's Post....

Wow! What a day!

Sandlyn's pain over the last 4 or 5 days has been on the increase instead of decreasing as Dr. Killian would have expected it to. I called the office for the second time yesterday and did not even ask to speak to a nurse, just made an appt. to go in today to see Dr. K. Our appt went as usual to begin with with Dr. K looking at the xrays they took and looking at her leg and foot. He said the xrays, he thought, even looked better than they had 2 weeks ago. But, when he examined her leg and was running his hand along the break area, she hollared in pain. He said the area should not hurt and was confused about it, so he decided it warranted a CT scan. He wanted the scan done today at St. Vincents and then for us to return to the office and he would give us the results. So, with very little waiting time, Sandlyn was in to get a 3-D CT scan done of both of her knees and the area just above and below the knees.

Once we had walked back to Dr. Killian's office, they took us right back and within a few minutes Dr. Killian came in to talk to us. Another conversation beginning with "Hmmm", and then he asked Sandlyn if she wanted to stay and hear what he had to say...and she said, yes. He asked me if I wanted her to stay, and I said yes. He had a disturbing picture that he drew of her legs for us on the paper that is on the tables in the exam room. He showed where the bone no longer even exisits on the back side of her tibia. Often these type tumors eat out and leave a shell of bone...this time it did not. It melted almost all of it. He held up a piece of the table paper he was drawing on and said..."a section of her bone in BOTH legs below her knees is this thin". Her tumors are incredibly aggressive! He says there is no reason, at this point, to believe that we are dealing with anything but the same old, same old thing as before. We continue to hope and believe they are benign tumors that have been very aggressive. We had lots of questions...and a very knowledgable, kind and patient Dr. Killian answered all of them today. We asked about the bone growth stimulating compound that he decided not to use last time...he says he won't use it with her because of her history of cancer and a few cases (in writings) that he has seen bad results. I am thankful he is being wise and cautious! We spent a lot of time going over the type casts she would need and have come to a common understanding on what he will try to use. Now, the only question was "WHEN?" His schedule is extremely crowded right now due to an upcoming week out of the office. His nurse told us the first available would be the Wednesday before Thanksgiving or the first of December. We told her, we would take Thanksgiving in the hospital. Within an hour of leaving his office, she called me on my cell phone. I was voting at the time and could not use my cell phone, So I have not talked to her. Her message said that Dr. Killian said NO to Thanksgiving...must be sooner. So they are desperately trying to work Sandlyn in to his next surgery day, which is Thursday...yes, this Thursday! We will not know for sure until sometime tomorrow, but that is what Dr. K wants and she says she believes he will get it. Children's Hospital has to ok it because his schedule is already too full that day. The office and childrens hospital will work on it tomorrow and we will pray about it tonight.

I will update when I have a more concrete day and time. Please pray for health....stay away stomach virus!....and good judgment on all of our parts and wise and discerning Dr. Killian as he operates! Pray that our Great Physician will use Dr. Killian in a way that even amazes Dr. Killian!!

Prayer Warriors Unite and carry us through again, PLEASE! We have a lot to figure out in a very short period of time.

Until next time...be a blessing to others...and pray, pray, pray!Sarah

Hello to All!

Finally, some results. We have heard from both Dr. Rutledge and Dr. Watts this morning. It is interesting that we heard from the doctors themselves and not just their office.

As far as the Rhabdomyosarcoma and the Malignant Periphal Nerve Sheath Tumor there is no sign of recurrence of disease!
She did have some abnormal CT scans. The chest CT shows some scarring in her lungs, but apparently it is not anything that they are going to do something with. It is a new finding from previous scans. The pelvic CT showed issues with her bladder that have never been noted before. Dr. Rutledge recommended that we go back to Vanderbilt and see Sandlyn's urology surgeon. This might be the explanation for all of the UTI issues that have been such a problem lately and had also raised our concern to a higher level over these scans. We are going to send that CT to Dr. Pope and work through him to see his recommendations since he is most familiar with Sandlyn. The chest CT and pelvic CT are going to be sent to Dr. Killian as well for his evaluation as well.

The pulmonary, echo, and bloodwork thankfully all came back in normal ranges. Most of the findings on the MRIs have been there before and are unchanged...the best we can hope for.

So, from here...we deal with her legs. NONE of these tests dealt with the leg issues at all. We had to go back to the ortho surgeon on Wednesday about some burning in her heel, but it looks like the positional tricks they told her about are helping. She also told me this morning that the swelling in her foot is going down because she has more room in the cast now. That is good. We are to go back to see Dr. Killian on Monday October 11th...10 days from now. Her pain level dropped drastically after receiving her hot pink cast on Monday. Her words..."on a scale from 0 to 10 my leg pain was a 15 while in the stablizer brace. Five minutes after the new hard cast was put on, it dropped to a 0." After 3 days of Lortab, prior to the new cast, she has had now had no pain meds of even tylenol or motrin. Much, much better. The cast is from hip to toe, but it is so much better than what we had been doing.

Lots to do today...so running on for now!
Thank you for keeping up with us and for praying and all of the acts of kindness you have extended to us!!

Until next time...be a blessing to others...Sarah

Hello to All!

Dr. Killian was a huge help today and I am so thankful we went to see him today! There is a very good reason Sandlyn's leg is hurting...it is broken. Yes, you heard me correctly, the bone is broken...and she has been walking on it. The bone that is broken is in her "good" leg and it is just below her knee. It is cracked about 2/3rds of the way across the bone. Sandlyn and I just sat there in shock when he told us...I kept saying ...'broken?, really broken? are you sure it is broken?" I thought we were going in to get a timeline on redoing the clamps in her knees, dealing with inflammation and deciding if any places in her legs warranted a reconstruction job....NOT broken?! He asked us if she had fallen...and we don't remember any falls. We just know that this has been going on for about 10 days. The tech that was looking at the xrays with Dr. Killian was looking at the xrays when Dr. Killian asked Sandlyn from across the hallway which leg was hurting. She said her right one, her good one. The tech looked in disbelief and he said to Killian, "did she say her good one? If that is her good one, I would hate to see the bad one." So Dr. Killian showed him the other leg. In Dr. Killian's words..."I would not have expected this in the right leg, but her left leg is very concerning." That was all the details he would give me.

Here is where we are: Dr. Killian put her in a stablizer cast from her hip to her ankle. He says if that does not get her out of pain we are to come back for a long leg cast that would run from hip to pass her toes. He is going to leave her in the stablizer cast for 2 weeks. On our appt for Oct 6th, he will xray and see if there is any improvement. If there is little to no improvement, he will do surgery and graft the area. He does believe that there is probably a bone tumor there. In two weeks, he will weigh out what problems we have and what areas he will work on...with both legs. She is to have absolutely no weight-bearing on this leg for the next two weeks.

He said he does want her to go ahead with all of the MRIs and CTs and that when they are done, he wants to see the pelvic CT. He did not explain why and was not interested in explaining why he wants to see it. We will probably have Dr. Rutledge send all of the tests to him. He did tell us that we will have to take the stablizer off for the MRIs and he wants to make sure that is done correctly and that we are involved in doing that.

I will spend the next two days with Sandlyn at Rudd to see if she is going to be able to continue with school for the next two weeks. We have a few issues to work out...but hopefully, we will be able to. She doesn't want to miss what she doesn't have too.

One a much happier note...yesterday was one of Sandlyn's bigger birthday surprises with her 13 day countdown. I had given her the hint that we would be going to Yogurt Mountain after school. She was thrilled because she has always wanted to go! It was made all the much better when she walked in the door of Yogurt Mountain to find her camp counselor, Mrs. Mary Huggins and her daughter waiting on her! Sandlyn was shocked and thrilled! We enjoyed a fabulous visit with them and they just made her day and week!! Thank you Mrs. Mary for going to the trouble to make this happen for her!!

Supper is ready...the encore presentation that it is, so I am going to go!

Keep praying, I am afraid this is just the beginning of a stressful time!

Until next time, be a blessing to others!

Sarah

Hello to All!

I am sorry to say today, that we are in a world of hurt! I say we, because when Sandlyn hurts, Barry and I hurt. Sandlyn spent all last week in her wheelchair and taking Motrin to help with her leg. Saturday and Sunday, she was feeling better and spent way too much time walking on it and by Sunday night she was feeling the results of it. Thinking that being off it again might help, she has been in the wheelchair again. It hasn't. Last night, she turned the corner and went downhill. Her leg is still swollen and now her whole leg is hurting and foot has even been swollen. She came to school today because I had a sub job, but thankfully it was at Rudd and I am a helper teacher today....I do not have a classroom of kids that I am solely responsible for. This morning, the main teacher has even had a guest speaker, so I was able to leave the classroom and take care of phone calls and arrangements.

I have been in touch with Dr. Killian's office this morning and Sandlyn has her appointment today at 2:10 instead of October 6th. Maybe we can get some answers and help today. In the meantime, thankfully, Ms. Ellen has offered to come get Sandlyn from school and let her prop up her leg and stay completely off the leg today. Maybe, we will know more this afternoon about what is going on than what we know now. Thank You!! I don't know what I would do without good friends!

Will let you know more, when we know more!

Until next time, be a blessing to others...Sarah

Hard to believe, but Sandlyn is just a couple of weeks away from being 13! This is a very exciting time at our house. . . our last teenager! We owe it all to God's wonderful care for her. Ten years ago, we were told she would never live to be a teenager.

So, to help celebrate this milestone in her life, beginning this Friday, we are having 13 Days of Fun leading up to the big day. She will receive some small token each day prior to her actual birthday.

However, Day 12 will NOT be much fun as she is having her annual checkups and MRIs with the oncologist. She is scheduled for a head/brain MRI, spinal MRI, chest MRI, abdominal CT, a pelvic CT and a chest x-ray. The MRI's will take approximately 3 hours to complete, so she will have general anesthesia for those. Sandlyn has been dealing with a variety of medical symptoms lately. We do not know if these are related to any problems, or if they are just things that are happening randomly. After a while, though, they do get to be concerning and this should put those questions all to rest and give us some answers.

Please pray for good results and answers from these tests. Thanks in advance for your prayer on her behalf.