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