X-ray today looked good!

After some nail-biting while we waited, Dr. Seidel showed me the xrays and told me that "it looks like the graft has healed". He showed me the before and after views, and areas that before had a gap now have bone. What a relief that this has worked! He isn't completely out of the woods that something could go wrong with the graft, but it looks likely that this has been successful. The doctor asked Aaron to stand, and after some coaxing from me that he was really allowed to he put weight on his left foot. It was weak and gave out, so he will definitely have his work cut out for him in physical therapy which will start next week.

Off to pack up for California!

Thanks,
Barbara

California here we come!

Our sweet friend is lending us her condo in Coronado for a few days next week, so we will be hitting the beach! Damon has to work, but Tricia is going to drive down with me and both boys for a few days of fun. SeaWorld has generously donated tickets as well as the San Diego Zoo through HopeKids, so we will definitely be taking in those attractions! I am mainly looking forward to just hanging out building sand castles and relaxing.

I went to a seminar yesterday on promoting speech and language for those on the autism spectrum. Ben is on the waiting list for more comprehensive testing, but we are going off of the twenty minute assessment that the neurologist did. Being there I definitely walked away thinking if he is on the spectrum, it is very mild. There are things that are "off" however that I need tools in helping him with. Please pray that I can get him on a good plan and program quickly. Driving home yesterday between the worry of some of Ben's issues and the worry for Aaron I started having an anxiety attack and almost couldn't drive. I am truly in a spot of having to learn to be anxious for nothing but be in prayer for everything.

Aaron will have scans done the first week of June, so of course I am a little nervous! Please pray that the scans are clear, and that Damon and I are able to have peace that week as all of the results come in.

Thanks!
Barbara

An answered prayer

I was asking for prayer for clear direction, and it really couldn't have been made any clearer. This morning I was still unsettled so basically on a whim called over to UCSF to speak with Dr. Dubois. He trained at Dana Farber and is the oncologist to another young boy I follow. To my amazement he answered the phone and was willing to speak with me regarding Aaron's case. Not only was he willing, he had just been corresponding with another doctor about his doubts that this radiation is necessary for kid's with good surgical margins. The other doctor agreed. Who would that other doctor be? Doug Hawkins from Seattle Children's Hospital. He also happens to be the chair of the very study we are participating in. Both of these doctors are very familiar with the study, and Dr. Dubois told me that he and Dr. Hawkins just did not see the evidence indicating radiation would be beneficial. So, we headed off to our appointment with Dr. Watanabe with this information, and to our surprise he agreed with them. It is a complete consensus amongst several doctors. Damon and I both feel a total peace now that this is the right decision and the best thing for Aaron.

So we are officially off treatment and Aaron is considered in remission. I was telling Damon that we need to get used to saying that Aaron "had" cancer. It's a great feeling, but also very strange. The shadow of recurrence will always loom, but for tonight I am enjoying knowing that we are done.

I've been looking back at the early posts and it is so amazing where God has brought us. Many things that we feared happened, but He brought us all through it. I am so thankful to all of you who have walked this journey with us either here physically or from far away. I'll continue to update as strides are made with physically therapy and such, but I have to tell you I am a little sad to know that this connection we've had with all of you through CarePages will slowly end. Thank you for being with us in spirit through this ugly and dark season and helping us to see the bright spots.

With much love,
Barbara

Houston, we have a problem

Houston, we have a problem

That was Damon's line and I thought it was pretty funny. The problem is that we have a big decision to make that could have negative consequences either way. We personally saw two doctors at MD Anderson, and they spoke to their colleagues about Aaron's case. All six doctors involved agreed that they would not recommend radiation. These were not clear terms, however. They would use phrases like "there may be a small benefit but I lean against it". Basically the problem is there are just not enough cases to get true statistical trends. If 10,000 four year olds had Ewing's sarcoma in their proximal femur that would be one thing, but we are looking at studies of 25 people of all ages and different tumor sites. We have a week to decide, so please pray. I don't think this is a decision that we can feel really good about either way. It was very sobering when Dr. Herzog stated that she wasn't as worried about leg recurrence as lung recurrence. She used the words "I'm worried for him". Not what a parent wants to hear, but I'm glad she was frank with us.

The fun stuff now! Aaron had a blast going to the Houston zoo. It is a beautiful place and the lush greenery amazed us Arizonans! Also, some friends in Houston helped us so generously by transporting us around and we had a nice dinner with their family. Aaron loved their kids and had fun. We also got to spend a few minutes at the lovely Hermann Park. The hotel staff was so nice and on two occasions gifts for Aaron were brought to our room. He also discovered room service, as a late night request for french fries (which you don't deny a child with a feeding tube) was met by a platter of fries brought to the door at 11:30 p.m.! Even though it is a place I'd rather not even know about, it was interesting and exciting to go to one of the top cancer hospitals in the world. It is truly a multi-cultural center - in the clinic waiting room I sat next to a lady in a full birka. That part was very sad for Damon actually. He told me that of all the people in the room he was most sad for her that she lived in that oppression.

Please just pray that we have wisdom in making this decision, and that Aaron stays healthy after all of the exposure on the plane.

Thanks

Barbara

Texas or Bust!

Everything is working out for us to go to MD Anderson on Wednesday. We will most likely be coming home on Thursday, but there is a possibility it will take an extra day. The social worker at PCH is able to get FREE tickets for Damon, Aaron and myself and a Marriott right there at the medical center had availability at a decent rate. I spoke at length with Aaron's doctor about precautions and even discussed driving, but she felt that driving would be too risky as there would be areas we could lose cell phone service and be too far away from a hospital if needed. She gave me advice on how to protect him as best we can on the plane, and she thinks it will all be fine.

Aaron will have his broviac removed tomorrow morning which is a simple procedure but will be done under general anesthesia.

Please pray that everything goes smoothly and we get clear direction. Please also pray for Ben that he can have an enjoyable time here at home and not miss us too much!

And the winner is . . . .

And the winner is . . . .

Luke Schlagel! Luke won the iTouch raffle and it was a joy to present him with his prize! Luke is a young man who goes to our church and just a couple of weeks ago did a lemonade stand for Aaron's fund. We surprised Luke by having him come to give Aaron the proceeds of the lemonade stand and then had Aaron give him the iTouch. I posted a video of Aaron giving him the iTouch at the bottom of this update. He was happily surprised! Thank you to everyone who participated in the raffle.

Aaron is doing amazingly well - great platelet counts and lots of energy. Friday afternoon he kept asking for Lemon Pound Cake from Starbucks (something he used to like). I never thought in a million years he would eat it, but got some anyways. To my amazement he started chowing down on it! He asked for more tonight, but all of the Starbucks were closed by then. I can't tell you the joy I had in seeing him eating with enjoyment for the first time since mid-March. Thankfully it has 500 calories per slice (good for him if not for me) and I'm letting him have as much as he wants!

I think we will be going to Texas for the second opinion, as it seems the only way we can speak with them directly is to go and bring Aaron. Not crazy about traveling with him with no immune system, but I think I'd always second guess myself if we didn't. Damon is in agreement that we need to speak to these doctors even if that means we will have to fly commercially. I am going to plead my case one more time that he shouldn't be exposed to the germs, but I think it is more a policy issue.

That is all for now! Please continue to pray that Aaron is completely cancer-free and remains so.