Sunday, August 22, 2010


Surgery is NOT tomorrow as originally planned. Last Monday when we called to finalize everything, we were told the surgery date had been changed. After a couple of days of back-and-forth phone calls with doctors, we were given the 31st as the final date. The change of date was because there is a plastic surgeon involved and it was difficult to coordinate the orthopedic surgeon's schedule with the plastic surgeon's schedule.

The 31st is over a week past the original date, and by the 31st he will have been without chemo for almost 5 weeks. So, we weren't very happy with the change, but the oncologists are so confident in these two surgeons and really want to make sure they are the ones doing the surgery.

Last week, we just hung around the house. It is too hot to do much else! We were able to have a couple of playdates, which was nice. Jackson LOVED seeing his friends that he had not seen all summer.

{Swimming with Austin}

{Baby brother enjoying the water}

{Riding cars with Jadon}

Friday we headed to the hospital for a count check, a meeting with the plastic surgeon and to pre-register.

We got to clinic and had a pretty quick visit. He weighed almost 36 pounds! I was so excited but not really surprised because he has felt SO heavy lately.

Our hopes were that Jack's counts would be high enough for us to go to church today. His counts had not been checked for 10 days (the longest stretch this summer--it was nice to not drive to Dallas for a full 10 days!) and at the last check they were 600. That is still pretty low, especially compared to normal healthy people.

We really thought that his counts would start climbing pretty rapidly since he has not had chemo since July 26th.


On Friday they were 900.

I was honestly hoping for twice that. I really thought that the combination of no chemo and time would surely mean that we would see a big jump. Anything under 1000 is neutropenic--meaning it would be risky to get him around large groups where we can't really control who is around him. Playing with one friend is a little safer in that I can ask the mom if anyone has been sick. Can't really do that at the church nursery!

The risk is so much higher right now, because we don't want him to get sick before surgery. If he got sick, it would be delayed even longer and that is the LAST thing we want.

Along with wanting to keep him well, we also want to make sure he has some fun before he spends a week in the hospital. So Saturday we went to an awesome children's museum in Waco. Even though we had to take extra precautions like washing hands every 20 minutes and avoiding certain things, he had such a good time! Besides a few trips to the store, a couple of restaurants and a few trips to friends' pools (all with lots of sanitizing!) the museum was really our only real family outing this summer. It was so awesome to let him explore and have fun. We did get the occasional funny look since he still has a bald little head, but oh well :)

When we were at the hospital Friday, we also met with the plastic surgeon. When we first learned that the surgery would require a plastic surgeon, we were told it was because Jack would be losing tissue and would need a mesh put in to keep him from having hernias. We were told to expect an hour for that portion of the surgery. The thought of having something foreign in his body wasn't thrilling, but we knew it was for a very good reason and the process of putting it in seemed fairly easy and straight forward.

So, when we met with him we were not really expecting anything different from that.

Wrong again.

When will I learn that cancer related issues are never easy and straight forward?

In talking with the plastic surgeon, we learned that he will be taking muscle from another part of Jackson's body to replace muscle he will lose during resection of the tumor. This is NOT something we were aware of and we were both pretty stunned to hear him describe the process.

One option is the gracilis muscle. This muscle is in the thigh and is the most expendable muscle in that part of the leg. Meaning he would probably not miss it. The doctor said that he would only need it if he was a high-performing athlete. Of course I think he will go on to win gold medals, so I think he needs it :)

The other option is the rectus muscle in the abdomen. This muscle is used alot in breast reconstruction surgery. It is NOT as expendable as the gracilis, but the doctor did seem to think his other muscles in that area would compensate. If this is the muscle he has to take, it would require a completely separate incision up his tummy.

Another thing that the doctor told us is that the mesh he will be putting in to prevent hernias will not be synthetic, but will be actual skin. Cadaver skin or pig skin. I understand that this is something that is safe and happens everyday, but it is just hard to get my mind around it. Eventually, the foreign skin would be completely absorbed by his body as his body heals and repairs itself.

He also told us that his part of the surgery would take three hours. THREE HOURS. Add that to the minimum of two hours to take out the tumor and we are looking at a five to seven hour surgery. I have no clue how we will make it through those hours.

Add all that to finding out he will come home with drains and have to have limited activity for six weeks. Neither of these things will be very easy with an almost three year old.

So, we had kind of a rough day Friday. But we know that God has a plan. And even though I almost threw up quite a few times and cried more, I know that getting through Friday puts us one step closer to getting the cancer out of his body.

I wish they'd let us shoot, stomp or somehow destroy that tumor once it's out, but they are anxious to get their hands on it since it is so rare. Not sure how I feel about that.

We go back this Friday for another count check, to pre-register (this past Friday they weren't ready for us) and for Jack to have a pre-surgery physical. We have officially been to the hospital at least once a week all summer. I'm so thankful he is young enough to not know what he is missing.

Friday did have a few bright spots. We have been so blessed through the kindness of family, friends and strangers. We are so appreciative! There are really no words to express how much it means to us.

An anxious heart weighs a man down, but a kind word cheers him up.
Proverbs 12:25



  1. I know you are so ready for this to be done with and it will be soon. God will keep you close and give you strength to wait through surgery. I wish I could be there with you guys. You are in my prayers.

  2. So good to see Jackson playing with his friends!! God Bless You All!!!

  3. I am so happy to hear that Jackson is having some well deserved fun!

    I just keep imagining them going in for surgry and seeing the cancer wrapped up in a nice pod and it is going to be smooth sailing for those surgeons. I wish I could be there with you but I will be in spirit.

    I say not to fret too much about them being anxious to get there hands on the cancer. They were that way with Monkey too and I think if it helps to prevent another child and family from living this nightmare have at it!

    Hugs & Prayers! xxoo

  4. Hey girly! Can you send me your address so I can get that bracelet to you! She will ship it to you the day I get your address!

    email it to me:

  5. Hello,

    I follow your blog regularly and we are praying for you. We are here in the Dallas area (Red Oak to exact). If I can bring lunch or Starbucks during surgery please let me know.




Related Posts with Thumbnails