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.