Merry Christmas!

As our Christmas festivities come to a close I just wanted to say Merry Christmas! There is no comparison between this year and last year. Last year Aaron was in the hospital on Christmas and I was pretty much a wreck! It was a pretty bad couple of days to say the least. I was just reading an update Damon did last year on New Years Day, and at that time Aaron's pain was unmanageable and we were so worried about the operation on his leg. What a difference a year makes! He has absolutely no pain, and doesn't even remember when he did. This time last year I couldn't imagine life being normal, yet today was a very normal day all things considered. Aaron got a Wii for Christmas from his "Nonni", and he was playing Wii and laughing and playing like nothing had ever happened. What a wonderful gift! We made animal-shaped cookies for Santa last night, and Aaron was so excited to get the stuffed Beluga whale he has been asking for.

It is still a little surreal at times what happened this past year, and there are times that even though things are great there is sadness. I think those of you who have gone through this with a child know what I mean, but it is hard to explain why there could be sadness even though things are good. That is why I am glad to have my online Ewing's support group - everything is understood. I am so thankful and happy for how well Aaron is doing, but I guess part of me is changed forever from the experience and living with the fear of recurrence. It's not bad necessarily - just different.

Tomorrow is another day of celebrating with my side of the family, and I am so happy for another fun day with family. I know it is a bit of a cliche, but I am trying to remember that Jesus is the reason for this season, and to spend a bit of quiet time in the midst of the hustle and bustle to remember what He has done in my life. We are so very thankful to all of you for your prayers and encouragement through this journey!

Clear ct scan

Clear ct scan

Aaron had a long day at the hospital today getting a chest ct scan, ekg, xrays and bloodwork, and then we met with Dr. Watanabe and found out that the ct scan was clear. Yea! I was very thankful that we could meet the same day instead of having to wait for results. I was concerned about not doing the PET scan, but he was able to explain to me that the isotope used in the PET would all go to the healing area in his leg and it wouldn't be an accurate scan. No use exposing him to more radiation without the benefit of an accurate scan, so he wants to postpone that until March when we will also do a bone scan and full body/brain MRI. Since the lungs are the greatest area of concern the clear scan today is a good indicator that he is cancer-free.

He has had tons of fun lately, including a ride on an ELEPHANT on Saturday at the City of Surprise holiday party. That same festival included an evening of fireworks and carnival rides which he thought was fantastic!

We will get the blood work info in a few weeks and that will indicate whether or not his blood system is improving well enough or if he will need to get another infusion of his stem cells. Obviously we are praying that it will rebuild well on it's own and we can save those cells for if we need them in the future.

Thanks!
Barbara

Lots to be thankful for! (Posted Nov 24, 2009)

Lots to be thankful for!

As we are approaching Thanksgiving I thought I'd do an update and just let you know how everything is going. Aaron is doing very well - he is still not allowed to put weight on his leg but he is happy and always in cheerful spirits. We've had lots of fun activities - he went on a train ride on Halloween with other kids from PCH and Make a Wish, he has had lots of time with his two cousins playing and doing crafts, and has made a friend on our street that he adores. I posted two pictures - one of us with the Make A Wish wish granters and one at the splash pad that was a good picture of Ben doing what he loves. I posted an update about Make-A-Wish but I don't think it got distributed. If you look at that one there are more pictures.

Ben is making great progress after going through the JumpStart program and I think we are on the right track. It is a constant fight for services for him due to the state budget cuts, so please pray that I can get him what he needs. It is being decided right now if he qualifies for a program that would really get him the therapy he needs, but it isn't looking good. He still has no functional speech so it frustrates me that this is even a fight.

Speaking of Ben, he has contracted what they suspect is H1N1 so he and I are home and Aaron is spending the days away. They put them both on Tamiflu, and obviously it is a big prayer request that Aaron doesn't get this. So far I am fine, and I am going to try to get on Tamiflu as well today. Poor Ben is pretty miserable, but hanging in there.

Aaron has scans coming up in a couple of weeks so I am going through my usual anxiety this time compounded because his doctor doesn't want to do the PET scan. I was given a protocol from that doctor that included PET every three months for the first year post treatment, so I'm not sure what has caused this change. I'm going in next Monday and I'll push for it then, because a ct scan of his chest and xray of the lung won't tell us if there is a tumor somewhere else. Crazy! I am learning how to fight for my kids through all of this for sure!

Damon always says that I leave messages that are too "cheery" and don't tell the bad stuff. I think I do, but I will be transparent and just ask for prayer for our family. I think the wear and tear of both boys having medical issues has worn us down and with the financial problems that have been created through it all some days are pretty bad. Ben is progressing, but autism is difficult on a family because it can limit normal activities because of the behavioral issues, etc. Please pray for our marriage that we can stay unified and connected, and for me that I won't be as anxious and can somehow keep my sanity!

Looking forward to Christmas at HOME this year, and making it a special and magical time for the boys. Wishing you all a very wonderful Thanksgiving Day and I'll check in with scan reports soon.

Thanks,
Barbara

Make-A-Wish and more!

(October 28, 2009 Post)

Wow, it's been a busy week or two! First, we had the Mayo Clinic Bone Marrow Transplant team reunion dinner. This was held at the Hall of Flame Museum and it was a very nice evening. It was great to see the doctors and nurses who were with us through such an emotionally intense time. Then the Make-A-Wish wish granters came and brought a little party to our house and Aaron asked to go to the Disney Animal Kingdom and Disney World. We will spend six nights in Orlando at the Give Kids the World resort and have passes to Disney venues and SeaWorld. Give Kids the World is only for wish kids and it is a really fantastic place. They will give us money for food and souvenirs, so it truly is a free trip. We are hoping to go in February after Aaron's fifth birthday.

Aaron is having surgery on November 2 to have his port removed. It is a quick procedure and thankfully outpatient.

We have been having lots of good times lately including a day trip to Sedona. He is really doing well with not being able to walk and just gets around by scooting or using the walker. He will have another xray in one month to reevaluate if he can start bearing weight again.

Ben started back to the JumpStart program today and he did very well and is using words more. He is still not truly communicating just imitating, so please pray that soon this will all click for him.

Here are some pics from the dinner and the Wish party.

Make A Wish Party:


Mayo Clinic Bone Marrow Transplant team reunion dinner:

Trying to Surprise Damon

Hi all,

Tuesday October 20th U2 is coming to University of Phoenix stadium for a big concert. Any of you who know Damon know that to say he is a fan is to put it mildly. He has a concert ticket, and actually HopeKids is offering tickets as well, but I am hoping that someone with some connection to the stadium may be able to get him a backstage pass or meet and greet time. I know this is a shot in a million, but it would be a pretty amazing thing for him, and sometimes I try to be a nice wife and do something cool. Not often enough, but occasionally!

Barbara

Surgery success

This update is coming a little delayed. According to Dr. Seidel
and the anesthiesologist, the procedure went perfect. They found
what was expected and replaced the 2 previous screws in the graft
with 4 new ones. Aaron is resting and only has a little pain. He'll
be monitored overnight and come home tomorrow or Friday at the
latest.

Aaron is in Surgery Now

Aaron in surgery now...
Should last about 2 hours. He was a little upset this time outside the O.R. Barbara had to peel him from my arms he was holding on so tight. It was actually a really nice feeling that he was holding so tight.

Aaron is really vulnerable to illness at the hospital. We're praying he doesn't catch anything, especially c.diff.

More to come...

Damon.

Surgery on Wednesday

Dr Seidel saw us today and we found out that basically where the donor bone had grafted to his bone just above the knee it has cracked and the screws holding the plate have pulled out. The graft bone is straight, but his own bone is tweaked to the side. We are not sure if it was a single injury or a combination of things but the result is that Dr Seidel will take out the old screws and put in new, larger ones. Aaron will hopefully only have to spend one night in the hospital and then he'll have a soft leg immobilizer brace and will go back to using the walker for a few weeks.

It is definitely a disappointment to have to start over with physical therapy, but obviously we are so happy that it wasn't a tumor that it seems like good news! Please just pray that Aaron experiences little pain and that the procedure goes smoothly.

Barbara

Today's x-ray results

I just heard from Barbara. Aaron's xray showed no tumor.
However, it did show that two of the screws in his leg had come
out, so he will need to have surgery later this week to repair it.
Also, he cannot walk on it at all, because it could break, so he
will be back in his wheelchair for now. Praise God that it is not a
recurrence!

~Tricia

Please pray

Aaron has a hard bump on his left leg (the same leg as his primary Ewing's tumor). I was actually out-of-town and Damon took him to the ER last night. Basically, the e.r. doctor talked to Dr. Watanabe and he thought it was highly unlikely that a tumor has grown to that size in the month since his last scans. Still, we are obviously nervous and there is no explanation as to what it could be. Tomorrow we are going into the office where Dr Watanabe will examine him and I suppose run tests. Please pray that this is just some kind of injury or something very minor.

Barbara

Clear Scans!

We saw Dr. Watanabe today and all of the scans were clear! We also saw Dr Seidel (the orthopedic oncology surgeon) yesterday and he thought the bone graft looked great and that he is walking well for where he is at. Yea!

The only disappointing news that we got is that Aaron's antibodies are low, and his T cells are low, so what this means is still no preschool and no Sunday School. We had been told that he could do that at the end of September and he was looking forward to it, so I am disappointed that this has to be postponed I know that this is nothing big, but he is so excited for school. Dr Watanabe did say that we could do a smaller program such as Kuman or something similar where he would only be exposed to a few other children. I think I will sign him up for something like this and we'll just call it school! I'm thinking primarily here of the social interaction, and just the normalcy of school. I can obviously work with him at home, but he needs to be around other preschoolers.

So please pray that his body continues to improve and especially that the T-cells continue to multiply. If there is not improvement they can do another infusion of his stem cells, but ideally his body will recover without that.

Next scans are the first week of December, and then he will most likely have his port removed as well as it is an infection risk.

Thanks!
Barbara

Here is a little video from Aaron at Physical Therapy last week - This day he did a whole obstacle course and got to climb over lots of things then up and down a ladder!:

No news is good news

Well, it's Friday afternoon and no phone call, so I am pretty confident that the scans were clear. We won't get the definitive word until Wednesday, but it would be extremely unlikely that they are just sitting on this information. We went back today for EKG, Echo, and xrays and he did great and was really cooperative.

Also, I think I found the perfect part-time job. It starts mid-October, and it is afterschool math tutoring through the No Child Left Behind program. I'd be working as an independent contractor through Mathnasium working at two Title I schools in the West Valley. The pay is much higher than most part-time jobs I've looked at, and the hours are really perfect as I would work approximately 2:30 - 5 and do administrative work from home according to my schedule. I think it is going to really be a good thing.

Thanks for all of the support and prayer through the waiting!

The anniversary

Yesterday, August 27th, was one year to the day that I took Aaron in to urgent care because his leg was swollen. One year ago yesterday I had never heard of Ewing's Sarcoma, and was making plans for Aaron to start preschool. Little did I know that I was going to be the one learning great lessons! It was a bit of a surreal day to be honest just looking back and remembering the details of how this all began. That afternoon in the emergency room when the doctor told us that there was a mass and erosion to the bone, I did not think Aaron had long to live. I am so thankful to have him here happy and healthy, and doing much more than I ever would have imagined. Tricia was good enough to put together a little video clip of him doing a couple of activities that you may enjoy. He has scans coming up this coming Wednesday, and as always I ask for prayer that they show no evidence of disease, and that I would draw close to God during the waiting and have peace instead of worry. I will post as soon as I hear news as to the results. Also, I am looking for some kind of part-time job that works around our appointments. If you know of anything please message me the info! Now enjoy this little clip of a full of life boy!

100 day evaluation

We had an appointment with the bone marrow transplant yesterday to go over Aaron's progress over 100 days post transplant and everything looked great. When Aaron labeled an animal in a book as a "dwarf lantern shark", the doctor told me she thinks his cognitive ability is fine! He had a hearing test last week, and his hearing was off the charts it was so good. In fact, the audiologist told me he should use ear plugs in movies and anywhere with a sound system since he hears things louder than most people. Chemo can sometimes significantly affect hearing, so this was great news.

They will get back to me in a week with results about his current liver function and kidney function, and they will continue to monitor his thyroid and growth hormones. As he approaches age ten they will refer us to an endocrinologist to see if any synthetic hormones will need to be used going into puberty if his growth is not where it should be. I do pray that he will reach full height. I know this is a small thing compared to saving his life from cancer, but I hope that not even one inch was robbed from him.

They also told me that in September they will clear him for going to school, Sunday School, or other functions involving groups of children. The bigger issue with this will be his leg, as a fall during rough play could still be problematic. I think I am going to have a hard time letting go of some of these things and letting him return to normal life, but I know he will soon be ready. He is still on the "fragile" side, in that he gets cold so easily and is overly sensitive to his environment, but the further he is out from treatment the more these things will subside.

Physical therapy is going well, and while it is a struggle sometimes to get him to use the walker instead of crawling he is getting the hang of it. It is a huge help in daily life that I am not constantly lifting him and the wheelchair in and out of the car. Now when we are going out he walks to the car and climbs up into his seat. This small thing makes daily living so much easier!

Please pray as we make decisions - financial, for Ben's treatment, our business. This year (yes, next month it will be one year since the dreadful day this started) has taken it's toll in so many ways and it's not a fun process to rebuild. On the flip side though, the learning and growth that occurs during the hard times is probably the best and most valuable, so I better learn something and be wiser in someway to make this worth it!

Thanks,
Barbara

Liver enzymes normal!

Last week they added another liver enzyme test to Aaron's blood work and I got a call that it came back perfectly normal! They are not sure why the previous one had been elevated, but thankfully it is fine now. Also, Aaron started physical therapy last week at PCH. I love his therapist and so does he, and he did a great job. He will go back today for session two. I'll get some pictures to post, and you may even see the slight shadow of hair! His eyebrows are back almost completely, and there is a very fine smattering of hair now on his head.

Ben finished his assessments and as I expected he was diagnosed with autism. The good thing about the diagnosis is it should mean help in getting services. Please just pray that I can find what works for him. I see all of things he can do - he understands what I say, he is very affectionate, he makes great eye contact - and I think that he can make great strides.

I saw this poem, and I thought it was really great. I'm so thankful that at least I have people who will let me talk about "my shoes".

"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown

Bone marrow stable

I got a call with the results from the bone marrow biopsy today, and there is no cancer (they didn't expect to see anything) and the bone marrow is stable for being 90 days post-transplant. She said it is at 50%, which is ok and he won't need another infusion of his cells. His liver enzymes are still slightly elevated so they will continue to watch to see why and if it continues. We will start going every two weeks now for labs, and hopefully later this week I will get his physical therapy schedule.

Ben is still in the midst of his evaluations at Phoenix Children's. It was a little hard today to see the areas that he is just not even on the same page as most two year olds. We finish that up on Saturday, and then should be able to get a plan to start him on some sort of program.

Please pray that they will figure out what is going on with Aaron's liver enzymes and that it will be a simple thing, and that I will get a good plan and program to help Ben with his communication.

Thanks!
Barbara

Scan Results

As far as tumor is concerned, the scan results were all good. There is no evidence of any activity at this point. Yea! One thing that did become evident from all of the extended blood testing is that the bone marrow and blood system are not where they should be at 90 days post transplant. This is not entirely unexpected, they are assuring me. Because Aaron is so young and his body is growing and requiring a lot, his system is under stress and "fragile". His liver is actually producing blood cells to try to keep up with the need. On Thursday they will do the bone marrow aspirate, and if it shows that the bone marrow is too fragile then he will get a transfusion of more of his stem cells. We have another bag of cells in the deep freeze that were not needed for the transplant, so if he needs a boost they are there. This would only mean one night at the hospital at most.

The main thing we need to do is still protect him from illness which would further stress his system, and try to get him to eat a wide variety of foods to gain some more weight and work towards better nutrition.

Another time of waiting is over, and I'm thankful for the good news! We will do full body scans again in three more months.

Thanks for all of the prayers that went up for Aaron this past week! I continue to see God work good things through this bad situation, and my continued prayer is that He would take this ugly thing and work it into something beautiful in Aaron's life down the road.

Thanks,
Barbara

Scans Today

It's time for the three month scans today (his last ones were just before the stem cell transplant). Of course I am pretty nervous and it's going to be a long weekend of waiting. If I ever wanted to learn patience and to learn to wait and rest in the Lord it is through the times of waiting for test results! His port was accessed at a clinic visit yesterday so that removes some of the stress for him, but they'll need to do an i.v., which never is easy on Aaron. I am going to ask that they give him Versed for that so please pray that they will listen to me. He still talks about the last i.v from three months ago, and I'd rather him forget the experience!

The California trip was wonderful and both boys had a fabulous time. We went to SeaWorld, the San Diego Zoo, and a few trips to the beach. They both loved the beach but Ben especially was thrilled to run in the waves. Thanks again to the Core family for letting us use the condo (which was fabulous and with a great view of the ocean) and to Bridget at HopeKids for arranging the free attraction tickets.

Please pray for clear scans and that the day goes well. Today Aaron will get ct scans of chest and abdomen, mri, brain mri, PET scan, nuclear medicine bone scan, x-rays of the femur, and to top it off bone marrow needle aspirates. Thankfully he will be under general anesthesia for most of it.

Also, please pray for the Dugan family. I've mentioned Amber before, but last week her body finally gave out and she lost her fight to Ewing's after five years of battling.

Thanks,
Barbara

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.

Still Waiting

Just a quick update to let you know that we are still waiting on the opinion from MD Anderson. I am not sure at this point yet whether I am going, or if we also need to bring Aaron. The Angel Flight pilot available has a small plane that has to fly at low altitude and stop for fuel so the flight would be an estimated ten hours, so I'm not sure if we'd use that option as it may be too much for Aaron.

Speaking of Aaron, he is doing really well. Yesterday we went to the clinic and his platelets were holding at 84,000 and his anc was 3500. That is a great improvement! He is in good spirits and wanting to play and have fun. Food still doesn't taste good, but I hear that can take months to come back. We have upped the ng tube feeds and he should be off of the i.v. nutrition by Tuesday. On May 5th he will have his broviac removed and go back to using his port, and on May 8th we'll be transitioned back to oncology. I hate to say goodbye to our bmt doctors and nurses, but it is a good thing that he has progressed so rapidly.

That's it for now, just looking forward to seeing family over the weekend and having some fun!

Doing well!

Wow, the difference a few days makes! On Monday Aaron was doing so poorly that I was crying when I pulled up to the clinic and the valet parking attendant (whom I know well) was giving me a hug and telling me he would pray for Aaron. He looked and felt terrible! Today, he is like a different boy! We did go to the clinic for platelets yet again, but his body is holding on to more of them and he isn't getting as low. They found out that his stomach issues were due to two viruses that were finally isolated in testing but those have pretty well run their courses. He has been playing and having a good time, and tonight he even went in the backyard and played "chair basketball" with his cousin Jason and Ben. What a good time we all had! He is eating chips right now (yea) and still feeling good after a long day.

A big thank you to anyone that has ever donated platelets. They are lifesaving to Aaron and he has needed so many transfusions. Blood donors are the unsung heroes to so many children!

MD Anderson should have all of Aaron's file and imaging discs by Monday then we can proceed. The hospital social worker is working on getting Angel Flight if Aaron is required to go as he can't fly commercially. Makes me a little nervous, but they tell me it's safer than driving! Hopefully we can get there soon so we can make these decisions.

Take time this weekend to enjoy loved ones and relax!

Barbara


Aaron playing with a new toy



Nana and Mommy entertaining Aaron during his clinic appointment

Happy Easter

Aaron had a fun day yesterday despite circumstances that I thought would be bad! He threw up his morning meds so I was nervous to take him on a car ride to his Aunt and Uncle's house for an Easter get-together. So, wonderful Auntie Elsa and Nonni packed up the party and brought it to us. Then, Aaron had a little blood by his nose, and these tiny red spots all over his face called petachaie so I knew he really needed platelets. He had been looking forward so much to this party that we held off on going to the hospital for an hour so he could have a little fun. Damon took him in and eight hours later they were home. Yes, eight hours for 45 minutes worth of platelets! I was so bummed, but he told me how much fun he had at the hospital, and then the group came back and finished up the party for him! He decorated a bunny cake and eggs and played on the floor. It was awesome! Then he started asking for cheese and was eating (we limited it) and then had part of a roll. This is a major step! So, the day that I thought was ruined turned out great for him thanks to our wonderful family that made it fun here and at the hospital.

Tomorrow I'm calling to try to set up the second opinion with MD Andersen, and please pray that goes well. The information from the radiation oncologist on Friday was pretty depressing, and I am just hopeful we can achieve the same outcome without some of the consequences.

Thanks!
Barbara

One month since infusion!

Today is the one month mark since Aaron received his cells, and things are going ok. He is still not eating, but last night he did taste about a teaspoon of pudding and did alright with that. He will be on the i.v. nutrition for another week and then if the nausea is gone we may switch back to the ng tube. He just is still dealing with nausea and diarrhea multiple times throughout the day and night, and he is getting pretty tired of that. At his clinic appointment yesterday they said he looked as expected or better for where he was at, so that was reassuring. He did need platelets, and on Thursday he will get a gamma globulin protein infusion to give his immune system a boost. I think I need one of those to shake this lingering cold!

Today we met with Dr. Watanabe to get the details on the radiation, and here is the rundown. Aaron's cell kill of the part of the tumor that was in the bone was only 50%. This dropped his cure rate by 10-12%. The studies indicate that for these kids doing the local radiation then brings that prognosis up approximately 10%, which leaves him about where we started with his prognosis. That statistic is a 65-70% chance that he will be no evidence of disease at five years out. The research indicates that if we skip the radiation that would then turn into a 53-63% chance, which is obviously a lot worse! So, our next step is to see the radiation oncologist here and then to get another opinion to see if there is a hospital with a type of radiation that will kill any remaining cancer cells but be less devastating to the mobility and graft. It doesn't seem that proton radiation is recommended for this, but again a second opinion is in order. If no other option is available then we will start at the end of May and go to Good Samaritan (where I was born, incidentally) Monday through Friday for treatments for two months. He will receive 40 treatments to achieve the desired dose.

On a happy note the garage sale was a big success and lots of fun. We had such wonderful donations and all of the people that volunteered to make it happen were just amazing! I can never move because I have such wonderful neighbors on this street! Erica also still has tickets available for the raffle, and new prizes have been added so I think we may have a secondary drawing a week after the iPod drawing. If you think you may be able to sell some tickets please email Erica at erica.shubin@gmail.com. A big thanks to those who have already taken tickets!

Please pray that we get good information and make the best choices for Aaron's future. Please also pray that our pool care business flourishes now that the weather is warming up and we do more marketing.

Thanks,
Barbara

He's Home!

Aaron got home at about 3:30 today and I am so glad! The home health nurse will come tonight at 8:30 to show us how to hook up his nutrition. He had a fun time celebrating with a few family members and friends, and was in great spirits playing. He is pretty wiped out now and will hopefully sleep well. I can't tell you how good it feels to all be under the same roof tonight. We will have a few visits at the clinic next week but at least those are outpatient.

Our next step is to meet with our oncologist on Tuesday to talk about the radiation, and then make some decisions. For now I am going to put that out of my mind and enjoy the weekend!

Thanks!
Barbara

Heading home soon!

Aaron's counts are up over 2000, and he is doing so well that it looks like we are going home on Thursday! Today is the three week mark, so this is half the time I expected we'd be there. His main problems now are coming from the medicine to treat the c-diff. The side effects are abdominal cramping and other various unpleasant problems, and he seems to be experiencing them all. Thankfully tomorrow he goes off of this medication and should start feeling better. A home health nurse will come out and show us how to hook him up to the fluids and nutrition he will still be getting through the broviac but the doctor feels he will do better at home.

I ran into Dr. Seidel - the surgeon - on the stairs yesterday so I got a few questions answered about the radiation. We can't get in to see our main oncologist about it until April 7th - slightly frustrating. After he told me what he knew about the radiation being prescribed by the study we are on, it is evident we need more opinions and now it is just deciding where to get those and how. Being cancer-free is top priority, but I do not want him to lose his mobility of the leg unless we are sure that is the only option.

I am thankful to be coming home! The exhaustion of sleep-deprivation is kicking in and it will nice to be home. Thank you to everyone who participated in the concert on Saturday. I am so humbled and grateful for your sacrifice of time and resources. I wish I could have been there, but Damon told me that it was good music!

My neighbors are doing another garage sale this Saturday, so if you have anything you are wanting to get rid of we will take it off of your hands! Or, if you are looking for good bargains come by this Saturday between 7 and 11:30. Just email me at rednickels@gmail.com if you have stuff or need directions, etc.

Here is a link to download the poster for the garage sale. Download it and print out as many as you need to help us get the word out: Garage Sale Poster

Thanks! Barbara

Benefit Concert - Tonight! Details Below!

"A Night of Inspiration Benefit Concert"

featuring Charlie Golden and Rapture with North Element

All proceeds will go to the Aaron Robinson Medical Fund

• The concert is tonight, 3/28/09 at 7pm
• Tickets will be on sale at the door and are $20 each
• It is at The Sun Bowl Amphitheater at 10220 N. 107th Ave. (just south of Peoria Ave.) in Sun City Link to Map
• Please note: It is an outdoor concert, so bring your own lawn chairs
• Here is a link to the poster for the event: A Night of Inspiration Poster
  
  
  

On the upswing

Aaron's doctor came in this morning with the good news that his count was at 280 today! This is wonderful news as it means that his stem cells did their job. He needs these infection fighting cells as he contracted C. Difficile bacteria (aka c-diff) at the hospital a few days ago. It's something you can get (mainly at hospitals) if you are on antibiotics. Unfortunately it causes bad diarrhea, and the medicine to treat it has some painful side effects like cramping and mouth sores. So far no mouth sores but he is having the cramping so he has needed some morphine for that. Now that his body can start to fight it he should be rid of this soon.

We got a bit of a shock as we were informed yesterday from one of the bmt doctors that it is recommended that Aaron get radiation. Unfortunately our oncologist has all of the facts on this and we haven't been able to reach him. After we get his recommendation we will get more opinions and look into the proton radiation. This type has fewer detrimental side effects and is unlikely to stunt the growth of his leg. It was a big like being near the end of a marathon only to find out there are an extra ten miles being tacked on to the end! The nurse practitioner told Damon that it is a good thing there are additional tools to make sure that Aaron stays cancer-free and I agree, but it was a big of a shock.

Tomorrow is the benefit concert, and I wish I could be there! Damon will be and Aaron and I will visit via Skype and webcam if everything works right! I am so thankful to everyone that has helped with this, from planning to playing to the support people that will be working there.

That's all the news for now!

Barbara

At the bottom

Aaron was at zero yesterday finally - which is good from a treatment standpoint but of course difficult for him. He is just struggling with the nausea and some diarrhea, and even on three different nausea meds some still breaks through. That said, he is doing so much better than I expected and has not needed any pain medication so far. He is mainly just tired and sleeps and watches just a little tv, and that is basically the extent of his energy. If he just sleeps through these next few days I'll be happy! The doctor anticipates that the cells that were infused will start creating new cells soon so she doesn't think he'll be at zero for more than a few more days. Today he will get red blood cells and platelets as his have dropped below the acceptable levels.
Ben's appointment did go as I expected and the neurologist thinks that he is on the "autism spectrum" even if to only a small degree. She gave me referrals for a further screening and to a program that she thinks will greatly benefit him and improve his communication abilities. She was very positive that she thinks Ben can have a normal life with intervention now. I was expecting this from her, but I have to say that I am overwhelmed with the prospect of adding in appointments for Ben to Aaron's already busy post-transplant plan of physical therapy and clinic visits. It feels like too much to handle, but then again so did chemo and look where we are now! Please just pray for me that I am truly able to give this burden over to the Lord and that He will give me strength for my tasks. Ben is such a great little boy with so many wonderful characteristics that I am really trying not to dwell on the label and just see it as an opportunity for him to get some help that he needs.
That's all for today! Thank you for your prayers. We were just talking last night how they are lifting us up.
Barbara

Good News!

Aaron's counts dropped down to 300 today - which oddly enough is good news! He isn't feeling great. He is nauseous, but doesn't have anything in his stomach as he is receiving i.v. nutrition so instead he gags and dry heaves. Obviously he really hates that! He still was in fair spirits though when I left to have a visit with Ben. More good news - the transplant coordinator has already filed for a reversal of the decision to deny the transplant and is 99% sure it will be covered.
Ben has his appt. with the neurologist/developmentalist on Tuesday, so he will get his day at PCH as well! Busy, busy, busy! He is doing extremely well, and I think the major hurdle at this point is the speech development.
Thanks!Barbara

Day Plus Three

Just a quick post to let you know that we are still in limbo waiting for Aaron's counts to drop. He was vomiting and had diarrhea last night and this morning, so they stopped the feeds through the ng tube and will go to the i.v. nutrition. We were holding off on this because it stresses the liver, but he needs the calories. He was still in good spirits and playing and being charming with his nurses and physical therapist. It is great that he is doing well, but it was expected that his counts would be at zero and they were actually up today at 2200. The doctor isn't worried yet, so I am trying not to but it is imperative that this high dose chemo work for him and wipe out his bone marrow so we are sure any remaining cancer cells are gone. I'd never thought I'd pray for his counts to go to zero, but that is the goal! He is just such a trooper and while I'm sure he'd like to go home he just never complains. I wish I were more like that!

The cells are in!

Just a quick update to let you know that the infusion process went extremely well. I'll post the pictures later of this amazing process, but suffice it to say that it was all extremely monitored and controlled. I am so thankful for this technology. The nurse practitioner from the BMT team told us that the cells know what to do and within hours they will go to his bones and start autopopulating. Isn't amazing how God made our bodies!
Now they are just monitoring his temp, blood pressure and respiration to make sure we are in the clear, but it looks like he will be reaction-free.He is munching on lollipops (to help clear the fishy-like taste of the preservative) and watching, of course, a video about animals.

Thanks!
Barbara

Raffle Starts Today!!

Win an Apple ITouch!

Fundraiser for Aaron Robinson

Help suppor 4 year old Aaron and his family!

Buy Raffle Tickets! Just $5 each!

Can't buy tickets but want to help?

Why not sell tickets to family and friends? It's simple. We'll provide the tickets, fliers, and a self addressed stamped envelope to mail the ticket stubs and money back to us. Prizes for whoever sells the most tickets!

Ticket Sales begin March 17th!

Drawing for the iTouch will be April 30th!

For further information: Contact Erica Shubin at (623) 398-7557 or erica.shubin@gmail.com

If you would like to make a donation, please make a check out to the Aaron D. Robinson Medical Fund and give to Erica.

About Aaron

Aaron is an adorable 4 year old little boy who is really friendly and loves animals. His parents are Damon and Barbara Robinson and he has a 2 year old little brother named Ben.

Aaron loves music and his favorite song right now is the animal alphabet song. On Wednesday morning (8-27-08) Barbara and Damon noticed his leg was swollen. They took him into Urgent Care and they sent him to Phoenix Children's Hospital where they discovered he had a tumor in his leg. After testing, they concluded it was cancerous.

Aaron was diagnosed with Ewing's Sarcoma on Wednesday (9-3-08). His primary site is in his left thigh. They also found that the cancer has metastasized as they found cancerous nodules on his lungs.