Sharing this post

I want to share this post with you from a blog that I have recently stumbled upon and love. I don't even know how I found it, but the writer is truly blessed. This post says so much about what I want for my own child and is just plain beautiful. Thank you Missy for sharing your heart!

I Don't Want my Children to be Happy

Home for Christmas

YAY! I WILL be home for Christmas according to my schedule. I saw my oncologist yesterday and found out that I will be going in for chemo on the 16th. I'll be in the hospital for about 4-5 days. This is the "rough round," so I am praying that I don't get so sick I end up back in the hospital during Christmas. Will you please pray with me that this round goes miraculously well? We are going to pull out the tree tonight and put it up. Then we'll work on decorating it tomorrow and Saturday. Hopefully by Sunday It'll actually look like Christmas around here!

We got home from Gainesville on Monday. My hospital stay wasn't nearly as long as I expected, so I was very happy about that. However, the surgery hurt a whole lot more than I expected. That I wasn't so happy about. I'm still really, really sore. The meds that they gave me when discharged didn't work well at all. Yesterday my Dr. wrote me a different prescription and although it is helping a little more, I'm still very sore. The good news is that the nodule that was removed was dead and no longer cancerous!! Which means the nodule on my left lung has likely responded the same way to the chemo. They will not worry about removing that nodule until I am done with my chemo. My oncologist in Gainesville is very pleased with this information. It is a really great thing that the chemo is doing it's job and very encouraging. I have to so that I am so thankful for modern medicines and the advances that the medical community has made in just the last several years. I hope and pray that one day they will find a cure for cancer. It is amazing to me the knowledge that God allows mankind. Even those that refuse to acknowledge Him.

Anyway, the next week of being home will be very enjoyable. I plan on trying to celebrate the season with Jarred as much as possible. I'll also be doing A LOT of school work with him! 5th grade is really killing us! There is just so much they have to do and know. He's working on a "Nation Notebook" right now. It is a detailed report on a nation of his choice. He choose Russia which I really know nothing about, so it's a learning experience for both of us. Speaking of which, if any of you know of a good, kid friendly Russian recipe I need it! He has to make and bring a Russian dish to their International Christmas party next Thursday. I'm at a complete loss as to what to make and the internet (for once) is not being very helpful. Everything I find is either very involved, doesn't have a picture, or doesn't sound appetizing.

Well, I have a lot to do and need to find the motivation to do it, so I better step away from the computer! Thank you all for your prayers and I hope that you are enjoying the Christmas season as much as we are :)

Surgery Update

We arrived in Gainesville yesterday around 5:30. Got all settled into the hotel then went out to find a sushi restaurant. After searching for a little while Amanda spotted one and we were off to satisfy my craving. It was really good! I could eat there everyday! Amanda even tried it for the first time and enjoyed it. We both stayed up way too late and were exhausted and dragging this morning. Thank God for Starbucks! So anyway, I had a CT scan at 8:40 then a bunch of x-rays of my hips and pelvis and met with my orthopedic oncologist at 9:15. Good news is that there are no new nodules on my lungs. The two that were there back in March are still there and surgery is set for Friday to pluck them out. I'm really praising the Lord for this. I was so concerned that more could have possibly grown and that would have been really bad. The Dr. told me that he had a kid in recently that had 100's of nodules on his lungs and there was nothing that could be done for him. I often get asked what my "prognosis" is and never really know how to answer that question. I want to say "they're curing me, duh!" But I've always been hesitant to ask if my situation was terminal and never got the impression that it was. But today I went ahead and asked my Dr. that question and he said well what do you think it is? I said "Well, we are trying to cure me, (duh!)" He said yes, but the odds are not in my favor and we are not out of the woods yet. That no new nodules have grown on my lungs is a very good thing, but we will have to continue to keep a watch on me for a long time. He said that the cure rate is about 25% for people that have metastatic osteosarcoma. I told him I am definitely in that 25%! My Dr. doesn't believe in God, but I do and I know God is going to cure me of this. The future certainly won't be an easy road, but the good news is that I know there is a future. The x-rays of my hips/pelvis were clear and showed no tumors or anything to be concerned about. Praise the Lord for that! I've been having pain on the right side of my pelvis and had been concerned that it may be something, so I am relieved that there is nothing to worry about. The Dr. said that it is probably just because I'm sitting (in his words) "cock-eyed." I've also been a lot more active recently so that could be contributing to it as well. I have an appointment set with my ortho oncologist in three months and then we will discuss prostheses & physical therapy and I will have more scans. It looks like I will have to have scans every three months for a long time.

I will meet with the Dr. that is doing the surgery to remove the nodules from my lungs tomorrow, so I'll have more info about the actual procedure at that point. There is one nodule on each lung and I'm not sure how they are going to go about removing them. Dr. Gibbs said that this is a big deal, but I reminded him that it couldn't be as big of a deal as the amputation, so I'm not to worried or nervous about it.

My pediatric oncologist almost had a cow when I told her I had stopped taking all my medications. I had been taking heart meds for the heart problems I had, but decided to stop taking them and my heart has been just fine. Honestly I am just sick of pumping my body with a bunch of different chemicals and can't keep track of everything anyway. But apparently I am supposed to be taking an antibiotic that is very important and prevents pneumonia and have completely forgotten to take it. She was not too happy with me about that and promptly gave me a prescription for it and told me that I HAVE to take it and will continue to HAVE to take it for about six months after chemo.

I have been in much better spirits lately. I think the combination of bible reading, prayer, talking with my pastor and being honest about my feelings and the meds have helped tremendously. I seemed to have moved to acceptance of this new life (minus my leg) and a future and a hope that without Christ would be impossible.

I have six more rounds of chemo. SIX! That means there is light at the end of the tunnel. The next one, which should be about a week or so after my surgery, is the roughest but it will also be the last time I have to have that one. I'm praying that I will be home and feeling well for Christmas. I'll be begging my Dr at home to make sure I am not in the hospital during Christmas and he's pretty good about that kind of stuff.

So, surgery is set for Friday to remove these nodules from my lungs and then theoretically I will be cancer free. The only place the cancer would go is my pelvis or my lungs and since my pelvis is clear and my lungs will be I'll just be praying that nothing new grows.

In other good news my disability was FINALLY approved, PTL!

I had a great Thanksgiving. My mom and my sisters came down for college days at PCC and we got to spend a lot of time together which was a true blessing and just wonderful. I'll tell you, it's hard to top Thanksgiving at the Rawles' house! Good, good food! I carried my camera around in my purse for a week and didn't take any pictures. I take that back, I took one of a sign for Rachel. I'll have to post it when I get home.

Meanwhile, I am exhausted. It is 12pm here in Gainesville and I don't HAVE to do anything for the rest of the day. I know that I will be eating something yummy today (haven't decided where yet), taking a nap (momentarily), watching some movies, reading, and who knows what else. Thankfully my first Dr appt tomorrow isn't until noon, so we can sleep in.

That's all the news I have for now. Thanks for the prayers & keep them coming. God is certainly answering them.

<3 Jillian