Steroids, headaches, and double dark chocolate cake

Aaron's sores are not healing despite all our efforts so far. We tried photophoresis five days a week for several weeks. This did not help. It did, however, contribute to fluid overload and increased blood pressures.  Dr. Davies decided to stop the photophoresis for a week.  Unfortunately, this did not help his blood pressure much.  Friday she decided to double Aaron's steroid dose for two weeks to see if this might help the sores heal.  Too soon to tell if the sores are getting better, but not too soon to notice the change in mood.  Watch out!  Steroid Aaron is back in full effect.  Screaming, tantrums, increased appetite, and Mom gone crazy. 

I have been having really bad headaches this past week.  The headaches may be from my horrible Monster energy drink habit.  They might be from episodes of crying when I see my kiddo suffering.  They are probably from dehydration.  Whatever the cause, steroid Aaron has not helped. 

The increasing steroid has given me a new hope, but I am having a hard time being overly optimistic.  GVHD is supposed to "burn out" in five years (if you survive to that point).  We are well into the fourth year post-transplant and I don't see much improvement since he first got GVHD three weeks post-transplant.  My prayers have changed.  I still pray Aaron has a full recovery (of course), but I pray that he is happy and we can all be at peace.  I will be comforted with peace and happiness right now. 

I try to get Aaron out of the hospital on my days off.  He can get passes for four hours out of the hospital.  Saturday evening I took him to Buca di Beppo.  Aaraon's requirement for a restaurant is that they serve spaghetti and garlic bread.  He ate two bites of spaghetti and one bite of garlic bread.  Then he asked for cake.  He ate a good portion of his gigantic double dark chocolate cake. 

Aaron wanted a spider for Christmas that he could hang from the ceiling. Neither Santa or I could find one. I did find this super cool remote control spider at Trader's World (flea market). Aaron thinks it is a little too big. I told him he should turn it on whenever the doctors and nurses come in and scare them away. So far he tried it on one nurse, but she still managed to stick around and get a blood pressure. We need to perfect our scheme. We are thinking of having it hide under the bed until the doctor walks in. Will keep you posted...

Meet Drummer

Two weeks ago Aaron met Drummer, one of two therapy dogs at the hospital. Aaron was thrilled. He was anxious at first, but warmed up to Drummer quickly. Drummer was the sweetest dog. No matter what Aaron did to him, he would just lie there calmly.  Drummer and Aaron have one thing in common for sure. They both love Pupster!  Drummer laid down the whole time until he caught one look at Aaron's favorite dog Pupster.  Drummer grabbed Pupster in his mouth and took off running. We all got a good laugh.

Aaron is not well. His sores at not healing and his oxygen requirements continue to increase. X-rays have shown fluid on his lungs.  His energy levels have decreased a bit.

Broken down and lifted up

Aaron's little body is very broken. He has had sores for months now that do not heal. The doctors believe it is gvhd. We tried a new drug (a last hope) and so far it does not seem to be helping. We decreased Aaron's steroid recently because he needs to get off of it. His sores started getting worse again. Now he is back on the same dose he has been on for probably a year. The steroids have caused his cataracts, do not allow him to grow, have made his muscles and bones very weak, and caused his skin to be incredibly thin. They have saved his life so far and for that I am grateful.  Aaron's oxygen requirements have also doubled this past month.

What has not broken is Aaron's spirit. He is funny, smart, feisty, stubborn, and extremely particular. When he does not want to do something, he does not want to compromise. However, when he decides he is going to do something, watch out. Nothing is going to stop him. He likes being in the hospital and everyone knows and loves him here.  He finds great comfort in his dogs and his iPad. He enjoys learning. He loves his sitters. When a sitter has not come for a few days, he asks about them. Today a child life volunteer came in. He asked (demanded really) that she sit and watch his iPad with him. She was super sweet and watched train videos with Aaron. Aaron enjoys company.  Unfortunately, the hospital has a strict visitor policy and we have to limit who can visit.

Aaron playing with Drummer

Two weeks ago I think I hit my lowest point.  Aaron had been in the hospital nearly a month.  He is not getting better and the doctors have no other options.  He may get better and he may not.  I feel like I am facing another point where I might have to say goodbye to the love of my life.  Over the last year and a half, I have had to sell my home and leave Florida to start a new life in Ohio.  Start a new job.  I have been lied to and cheated on for years.  I am still the third wife of a man I am longing to be divorced from. The divorce has been a nightmare with having to prove things like I was actually "married" since 2010. The final straw that broke me was finding out I am being secretly recorded while caring for Aaron in the hospital.  I have a son in the hospital who may or may not be with me for much longer.  I have prayed and prayed and he is not healed.  I was mad!!  And I was mad at God!  I was driving in my car and I screamed louder than I knew I could.  I yelled at God and told Him that He must absolutely hate me.  I even told Him I was ready to turn my back on Him.  He did not care about me so why should I care about Him.  I said He must show me a sign or I am done praying.  I wanted to be done proclaiming the good He has done.  I was done!

Then I felt super guilty.  Of course I did not mean the things I said.  But I was angry!  Why does the suffering not end?  Why can't I have some peace for just a little while?  Then I screamed some more.  Then I felt guilty again.  So I turned on the Christian radio station hoping that I could redeem myself.  The first song that came on the radio was "Tell Your Heart to Beat Again" and I knew what I always knew.  God is with me.

https://youtu.be/azYK8I2uoog

I know that I am not someone to be pitied, but envied.  I have been given one of the most beautiful children on Earth.  God has chosen me and trusted me to care for him.  We laugh every day and love life together.  Aaron inspires people and brings people together in prayer and joy.  God has used Aaron in ways that I cannot believe.  I am truly blessed in life.  I am still scared of losing Aaron, but I also have a sense of peace knowing that everything is going to be okay.  No matter what the future holds.  I am embracing the new chapter of my life going forward and I continue to pray that God will allow Aaron to be a part of that chapter. 

Thank you for all the prayers.  Please keep them coming.  They keep us going.  They lift us up.

Everyone look at my new shirt

After his bath, Aaron decided to wear his new shirt. He also decided EVERYONE in the hospital should see his new shirt.  And that is exactly what he did.  He walked up and down the unit stopping all the nurses and PCAs to show them his shirt.  Since it was evening, there weren't many people so he wanted to leave the unit.  We walked all around the fifth floor of the hospital stopping everyone (most parents who were coming and going). Still not enough people saw his new shirt.  He heads straight for the elevator and insisted we go down. I didn't have my badge so we couldn't go. He was sad, but decided it was a good time to stop and rest his legs. Then we walked back.

Everyone told them they liked his shirt. A few asked about his puppy (Pupster). Most said he must like trucks. He said no every time. The truth is he doesn't like trucks at all. He only likes trains. The whole thing was awesome.

Easter willpower

Aaron woke up shortly after me Easter morning.   I was super excited for his egg hunt.  I said "Aaron guess who came overnight. The Easter bunny!" I asked if he was excited. He said yes. I asked if he was ready to see his Easter basket and find the eggs. He said "No Mommy, I am going back to sleep for awhile."  What?!?!

I had to go to work and the sitter came to be with Aaron. I told her to do the egg hunt with Aaron.  She asked if he was ready to see what the Easter bunny brought. He said "No. I will wait for mommy to come back from work."  What?!?!

I wish I had this child's will power. Finally in the afternoon, he opened an egg next to him in bed. There was a little dog in it. Suddenly, he decided he must find all of his eggs. He did wait until I got back from work to look in his basket.

Here is a pre-Easter egg hunt we did two weeks ago.

The good, the bad, and the unimaginable

Cincinnati Museum Center

This past week was overall pretty good.  Aaron's sores look as though they may be healing.  The dressings use to get soiled and fall off several times a days.  They are no longer falling off.  Dr. Davies thinks the sores look like they may be less deep than before.  He still bleeds from his wounds and soils his clothes in blood at least once a day.  Overall, I think he might be getting better which is huge!!! 

Aaron's cataract surgery also went well.  Aaron could not see anything unless it was about an inch from his face before.  The high steroids over the years caused severe clouding of the lenses.  He had surgery in his right eye and now he can see much better.  We decorated his room and he can see the decorations.  We are also able to start doing his sight words again.  Aaron wanted to learn about the surgery.  After watching two videos on cataract surgery, he explained to the ophthalmologist exactly what he had done to Aaron's eye.  The ophthalmologist was pretty impressed. 

The not so good... Aaron's line broke at midnight Friday night.  He had a new line put in a couple of months ago and it has been terrible from day one.  Neither lumen flushes or draws very well at all.  The nurse was flushing the line and we heard a pop.  My heart stopped for a minute.  A broken line is not good.  It can be repaired one time and then he will have to have surgery for a whole new line again. Thankfully, at 2am, the line was repaired.

The best part of the week is Aaron.  He has had endless energy.  I took him to the museum again Saturday.  His favorite part of the train display was closed for renovations. He was forced to look at new things. At first, he was not happy. Then he asked to get out of the stroller and began exploring and walked for about forty five minutes up and down steep ramps. We then went back to the hospital. He did not want to get in bed. Rather, he insisted on standing up to eat his dinner and must have stood for another hour.

He has energy that I haven't seen in years. He had an NG tube put in a few weeks ago. The doctors wanted to give him peptamen jr formula. I said no.  He drinks Boost Breeze (juice version of Boost) all day long. I didn't see how more artificially derived substances would help. I worked with the nutritionist to find a formula derived from actual food.  We found Compleat containing chicken, peas, carrots, tomatoes, and cranberry juice. Prior to this his diet consisted of garlic bread, lactaid milk, boost breeze, and cupcakes and four bites a meal was a considered a success.   He gets Comlpeat four times a day.

The Amazing Kid Named Aaron

Sleeping better than he has in his life

I have no choice but to brag and give thanks!

The last few months have been rough. Aaron has been in and out of the hospital too many times to count. Three blood infections. Two surgeries and a new central line. Many, many fevers. And sores that ooze and bleed and cause a great deal of anxiety and pain. The sores are scary. Either they will heal or they won't. If they don't heal, the outcome is not good. Right now the sores are stable (which means they are bad but not worse). We went on a pass today to the museum and I looked down at Aaron and his shirt is soaked in blood and dripping blood. The slightest touch can cause a new tear and bleeding.

When we got back to the hospital, Aaron did not want to get in bed. He walked all around the room. He was moving pictures around on his wall. Then he turned on Pandora and started dancing. He had his doggies dancing. I told him I had to wash his bloody clothes. He insisted on coming with me and refused to let me carry him at all. The walk from the room to the laundry is outside the unit and a good lenghthed walk. Then he walked the whole way back. He even teased me and purposely went the wrong way. After we got back to the room, he engaged in a full on conversation with the PCA. Anyone who knows Aaron knows that a scream and "go away" is about the best you get from him. Not today. He told the PCA all about his sister, each of his dogs, how he has an appetite from walking and on and on. I am having flash backs to when he was two and ran a mile a day saying "I can't stop! I can't stop!"

Aaron's little body is so broken and worn yet he perseveres like no other. He speaks his mind wether you like it or not and is stubborn as hell. God made this child strong. Just when I started to lose hope, Aaron renewed my strength.

Dancing with Squeaky Cheese (big dog)