A Taste of Normal

During physical therapy we got to go outside for a few minutes under the shade to the playground. Aaron hasn't been allowed on a playground in two years. We wiped everything down really well and had fun. This was a special treat.



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ECP

We have been praying and hoping Aaron's doctor (Dr. Bleesing) would make it to Aaron's clinic visit last Wednesday. You would think he would show up since the appointment was with him. Once again, he did not show and again we were left with our questions unanswered. We have been waiting week after week for his doctor to make it to Aaron's scheduled appointments. Sometimes other doctors come instead, but when we ask questions they all respond "you will have to ask Dr. Bleesing about that." I gave up hope and realized we would have to go to Chicago for Aaron's treatment. Michael and I were fine with that, but I was concerned with uprooting Aaron to another place.

Michael was so mad he told me to call the head of the BMT department, Dr. Davies. I called and spoke with her. I couldn't even finish my conversation with her because she said hold on and I'll be right there. She was there in five minutes, she reviewed Aaron's chart, said Aaron was a perfect candidate for photophoresis, and scheduled his new line to be placed the very next day.

Today is Monday and Aaron has now had four ECP (extra corporeal photophoresis) treatments. He will be inpatient for awhile since his treatments are every day. Dr. Davies says she will oversee Aaron's treatment and make all the decisions. She even approved Aaron to bring his trike and ride it up and down the halls of the BMT unit (this is great because we were told "no" by other people, but you can't argue with the head honcho).

I finally, finally, finally feel like Aaron is on the road to recovery and the worst is behind us. We will no longer be going to Chicago.

Here is a picture of Aaron getting his ECP treatment today.




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As the Holidays Approach

                                                  
You may be wondering what you can do this holiday season to make the world a little brighter.  I have many ideas for you that would benefit the Ronald McDonald House in your area.  The Ronald McDonald House provides families with a place to stay while their child is receiving care at the hospital.  RMH in Cincinnati has been very good to us. We spent the holidays there last year and we will again this year.

Organize a meal to serve.  This could be breakfast, lunch, or dinner.  You can cook it yourself at the house or pick up something and drop it off.  Get some friends together or coworkers to make this even more fun.

Hold a photoshoot. If you are talented, you can take pics and put them on CDs for the family.  If you are less talented, you could bring a Polaroid instant camera and have silly photos taken (ex bring silly hats or funny masks).

Hold a face painting session.  You don't have to be talented.  They have stencils you can get at party stores.

Ideas that get your kids involved:

Drop off snack bags.  Buy paper lunch bags (white is best).  Fill them with snacks and juice boxes and let the kids color the outside of the bags.  Families love these.

Plan an arts and crafts event.  With the holidays coming up, there is all kinds of stuff to do.  The kids at RMH love arts and crafts.  Call your local house to set up a time.

Make cookies.  Holiday cookies are fun or you can make your specialty dessert.  Homemade always brings a smile.  

Low on funds, no problem:

Organize Christmas carolling.

Make a pancake breakfast or cookies.  Most houses already have the ingredients for all of this.

Showcase your talents.  Play an instrument, have a puppet show, charicature paintings, dancing, or anything.

Spend a couple of hours cleaning the house.  A lot of the cleaning is done by volunteers.

Donate items:

Unwrapped presents

Cleaning supplies - hand soap, paper towels, dish soap, dishwasher soap, toilet paper, kleenex, etc...

Happy 3rd Birthday Aaron

We had a simple but fun celebration today. We had pizza for lunch. I made broccoli for myself and let Aaron try some. To my surprise he really liked it. Then we had cake. He took two bites of cake and said "I want more broccoli instead of cake." I was shocked.

He opened some presents. He loved his new food toys and bubbles. We took a break to call his sister and played freeze dance with her. We had a blast.

After a much needed nap, Aaron woke up and did a little song and dance with his harmonica. Then he opened more presents. He rode his trike up and down the hall a bit and we blew bubbles outside on the patio.

We wound down the day watching his new Ratatouille movie. He loves this movie because it is about food and cooking.

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We won't take no for an answer

We have been back in Cincy for a month now.  Aaron was inpatient for two weeks and then outpatient for two weeks.  His doctor tried to do another steroid wean which lead to worsening of his GVHD again.  He is having diarrhea, his skin is flaring with rashes, nails are brittle and peeling off, and his tongue is covered in lesions.  This led to him being hospitalized again last week.  They are trying a new medication that should help called infliximab.  However, studies show this medication only helps temporarily and is not a long term solution.  Cincinnati is still hesitating on photophoresis.  I have come to the conclusion that they have too many patients going through BMT and not enough means to give them all photophoresis.  They have to reserve it for the critically ill. 

We have researched ECP (photophoresis) extensively.  (Glad to know that the research skills I gained during my Master's degree and Doctorate degree have finally paid off).  I have even been in contact with the VP of clinical trials for Therakos, the company who makes the ECP machine.  Aaron WILL have this treatment.  The proof is in the science and the studies.  We have contacted Boston Children's and Lurie hospital in Chicago.  Both think Aaron is a great candidate for ECP.  The head of the BMT department at Lurie personally called my husband twice so far and has set up an appointment for him for October 22nd.  We will likely use this facility for his treatment.  Lurie was one of the first in the US to do ECP on children, especially little children like Aaron. 

Chicago told us to give them a 12 week committment.  No problem there!  What is 12 more weeks.  Looks like we may be spending the holidays in Chicago.  This works out well anyway.  Michael is a pilot and based in Chicago.   I think a change of pace will be good for all of us and give us a renewed strength and hope. 

I told my husband... We picked the best place for Aaron to have his transplant, now we have to pick the best place to deal with his GVHD. 

Aaron is active, mom and dad are frustrated

Aaron is starting to run a lot again. He is nowhere near as fast as before transplant, but he is gaining speed and stamina more and more. His new love is riding his trike up and down the halls of the third floor at RMH. He is starting to do no-hands (a trick he learned from his Caliou book). He screams with excitement. We have already gotten complaints from the family below us because Aaron wakes up at 7am and the first thing he does is turn on his cat piano and dance.

We couldn't be more thrilled with Aaron's excitement for life and increased energy. HOWEVER, we are discouraged. Again, the doctor tried to lower Aaron's steroid and now his diarrhea and skin problems are coming back. He will not end up like before since we are in Cincy and they keep a close eye on him. However, the steroids are breaking down his bones, stunting his growth, shutting down his pituitary gland, and many other bad side effects. He has to get off the steroids.

There is a treatment called photophoresis that is a possibility. It usually works very well with gvhd with very few side effects. This procedure is easy for adults but tricky for children. The doctors here reserve it for really bad gvhd. Other institutions have found that this treatment can be successful even using in cases like Aaron. We do not want to wait until his skin falls off, his gut is destroyed, or his joints are irreversible stiffened (all lasting effects of chronic gvhd). The longer the doctors wait the more lasting effects from gvhd Aaron will have.


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A Shout Out To My Mom

The Ronald McDonald House asks each family for $25/night but does not turn anyone away due to inability to pay. The cost to maintain the house is $90/day per room. My mother has made a payment to them every week and we have been there a long time. We are grateful that she has made the donation in our honor week after week.

My mother has also helped organize several fundraisers including an auction/dinner in Tubac, Az and an ice cream fundraiser at Dairy Queen. She and her team of volunteers have raised thousands of dollars to help us out with medical expenses and the cost of living while I am unable to work.


http://www.turquoiseangel.com/


In November it will be a year (accept for five weeks at home which did not go well) that we have spent in Cincinnati treating Aaron's immunodeficiency. We didn't do it alone. Everyone reading this has also helped us in one way or another: kind words, financial contributions, prayers, a phone call, a Skype call, a good book recommendation, fundraisers, gifts, cards, letters, collecting our mail, sending homemade train videos on their phone, and so much more. Thank you all!