Aaron's Hyper IgM Journey

Monday, December 31, 2012

Wrapping up December





The end of the year is here and I am ready to be rid of 2012!!! We have been blessed in many ways and for that I am forever grateful. However, I never ever want to do any of that again.

I started back to work in Orlando and I am very happy with my new store. The customers are nice. Michael and I are taking turns caring for Aaron. We are like strangers lately. I arrive in the morning and he leaves the same day in the afternoon and vice versa.

I spent Christmas in Orlando but got to see Aaron open his presents via FaceTime. That was really special. I went to Stan and Judy's for dinner. That was really nice. The food was excellent!

So far the winter in Cincy is colder this year than last year. There has been snow several times and it has stuck to the ground for days. I drove in the snow for the first time in my life. I was very scared.

I said that by the end of December I would assess the photophoresis. I do think it is helping. Aaron hasn't been admitted to the hospital for two months. He hasn't had diarrhea. However, he has been itching like crazy and the gvhd has flared all over his body. It doesn't look horrible but this is a setback. He had to go back up on his steroids today. I feel like screaming. I had hopes that 2013 would bring hope and health and only good things. I am also noticing more and more that Aaron has cognitive setbacks. He was soooo smart and sharp before. Now he is slower. I pray he will not always be delayed. Chemo is known to do this. It is called chemobrain.

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Tuesday, December 18, 2012

So Much Good

I feel like I am walking on water right now.  Out of nowhere Aaron starts adding numbers together.  1+1=2, 1+2=3, 1+3=4, 2+2=4.  Before transplant, Aaron was ahead of his age in many skills.  About a month ago, I was told Aaron is delayed.  He cannot draw a straight line or a real circle.  I was devastated.  Not because he is delayed, but because I never showed him how.  I was too concentrated on keeping him alive, I forgot about all the other things like circles and lines.  I don't know if he should be adding numbers yet or not, but I never taught him how.  I am super excited to see that he is still learning.

Another huge and exciting point of my day was while Aaron was tricycling .  He was having trouble with the pedals.  I couldn't figure out what was going on.  After about 15 minutes, I decided to adjust the seat back for him.  Sure enough, that was the problem.  Aaron GREW!!!!  He has been on high steroids that prevent growth, but he is finally growing again. 

Aaron is also a lot more playful lately.  He watches the iPad a lot less and asks to play.  He doesn't play with his trains that much lately.  He has two new toys that have taken over.  He makes toy sandwiches and cuts them up and plays with a rocket ship. 

Health update: (1) Aaron's kidney numbers are in a normal range for the first time since transplant.  This is huge news.  (2) Aaron's EBV came back about a week ago.  The numbers got high enough to cause some concern.  The doctor wanted to wait and see what Aaron's body would do.  Sure enough, the numbers started going down on their own.  They did give him a drug to help get rid of EBV, but this was huge news as well.  This is a sign that his immune system is working a little.  (3) Finally, I am starting to believe the photophoresis is working (still a little too soon).  We have gone down quite a bit on the steroid without having any bumps along the way.  In the past when we weaned the steroid, we would sometimes have to increase the dose temporarily or stop the wean.  We have gone down week after week on the steroids since October without any problems. 

I feel like the luckiest Mom in the world!!!!!

Saturday, December 8, 2012

Going home to work

WOW!!!  What an ordeal.  I was super sad to leave Aaron (and my husband of course).  My stint as a SAHM is over.  I am back to working full time.  My schedule is great!  6 days on and 8 days off.  This will be very helpful to keep up with Aaron's care.

My flight home yesterday was interesting.  The guy next to me was coughing and sneezing and sounded horrible.  I sat for two hours against the window with my jacket over my head the whole time.  Yes, I was THAT person that everyone stared at and thought was crazy.  But, I am sure I am crazy after everything that has happened to me and I am fine with that.  :)

Then I arrived at the house in Orlando.  We had ordered most of our Christmas gifts on cyber Monday and sent them to the house.  I knew I would be home soon to receive the gifts.  Only one package was on the porch and it was from Aunt Katie.  Everything else was STOLEN!  Thank goodness most of the things I ordered were from Amazon and they replaced/refunded with no questions asked.  I was pretty impressed.  I just have to laugh.  I don't get worked up about much,  just Aaron's health.  All we want for Christmas is NO MORE GVHD!!!  Please feel free to send that to us anytime.

Just now, I called Aaron and read him a story over FaceTime.  I feel blessed to live in a time with technology that brings us all close to each other even when we are far away. 

Saturday, December 1, 2012

A new month

December is here and I can hardly believe it. I apologize to all of those who have read the blog lately and are worried about us. We are fine. November was a tough month for many reasons. We have worked out most things we needed to and are back on track.

Aaron's gvhd started flaring about three weeks ago. It is extremely mild and hasn't gotten worse since. This is the most important thing in our lives. KEEP GVHD AWAY!!!! We wish it was gone entirely but thankful it is very mild.

How could anyone be depressed in December. All of the holiday lights are so beautiful. RMH really does a great job decorating. They have a train display that Aaron loves. The first picture is of the volunteers putting it together and the second is after it was done.









We are still working on bringing Aaron home. Neither Birmingham or Atlanta are willing/able to do Aaron's treatment. Looks like we will be commuting to Cincy twice a month once we get home. I will have to invest in some audiobooks. :)

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Tuesday, November 27, 2012

Flares and prayers

Aaron is doing ok.  It is still too soon to tell.  His GVHD started flaring up again last week and I was devastated to say the least.  The rash is on both calves and is very mild.  We have been going down on his steroid every week and he is down about 45% from the highest dose.  He is still on a pretty high dose to be showing signs of a flare.  He is also now on the photophoresis that is supposed to make all of this better.  The doctor said not to worry that all of this can happen and he can still get better.  She is not too concerned at this point.

I will be leaving next week. I have to go home to work and will be leaving Aaron behind.  What a hard thing for a mother to do.  I try to remember that in the long run, this is best for everyone. 

We are still trying to find a location for Aaron to get his treatment that is closer to home.  As expected, nowhere in Florida is capable.  Sometimes I don't get Florida.  Florida is the fourth largest state by population.  Why is it they can't have good specialty programs in medicine?  Why can't they figure out how to tabulate a presidential vote?  Why do they keep increasing the toll road prices, when they budgeted that the tolls should have paid for the price of the roads years ago?  I will stop here. 

We are looking at Atlanta and Birmingham as options for Aaron's treatment.  Michael will take some time off from work in Dec to watch Aaron and he has vacation in January.  After that, Aaron has to come home or else things will start getting extremely hard for us. 

Aaron's GVHD may not resolve for 1-5 years from now.  We need to devise a plan to keep him safe in Florida so we can continue with our lives.  He is not thriving in the Ronald McDonald House.  And we cannot continue to live without working. 

This was a hard week for me.  A 13 year old boy lost his fight.  This boy was an incredible young man.  Mature beyond his age, yet such a fun kid.  He loved to go to the skate park with his friends.  Unfortunately, one day his world was turned upside down and he required a bone marrow transplant.  The 1st one failed and then he had a 2nd transplant.  He was doing really well for a long time.  Like Aaron, he started having complications.  Please pray for his family. 

Saturday, November 24, 2012

A year ago today

On the Saturday after thanksgiving last year we packed up our car with donated food, warm clothes, and a few toys and left on our journey to Cincinnati. I had cried for months leading up to this day. I was scared to death not knowing if this was the right decision. Once we left, I put all that behind me and never second guessed myself. I am surprised how little I have cried since (I mostly cried when I didn't know if Aaron would make it).

Unfortunately, Aaron's immune system is still worse now than before transplant. We still believe he will heal and we hope soon. Michael and I have worked together to get through this last year. Things are going to be really hard now that I am leaving to go back to Orlando to work full time. I can't imagine leaving Aaron for weeks at a time. I figure that we have gotten through everything else the past few years and we will get through this as well.

On a brighter note, I saw glimpses of Aaron's personality shine through today and that was fun. Makes all of this worth it.
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Wednesday, November 21, 2012

German Donor

We found out today that Aaron's BMT donor is from Germany.  I would have never guessed that.  I did some Wikipedia research and found out that the Afro-German population is very small.  A lot of this population is ethnically mixed.  As a result of the genocide with WWII, Germany does not include race as a part of their census.  Therefore, the exact Afro-German population is unknown.  I would estimate this population to be 1-2% of the total German population.  I find this interesting because bone marrow differs based on ethnicity.  Considering Aaron's background, I would have expected to find his match in the US or Caribbean. 

Unfortunately, Germany has a two year wait before the donor and patient can make contact.  Until then, I can only send letters without any identifying information whatsoever.  We will have to brush up on our German over the next year.

The not so great news... We will be spending the holidays in Cincinnati.  :(((((  We were hoping to work with St. Petersburg to do Aaron's photophoresis.  We found out that they do photophoresis for children, but not as small as Aaron.  Little children require a special machine and a donated unit of blood for the procedure.  I asked our doctor if we could start looking for the next closest location.  She does not want to look elsewhere at this time.  All Children's Hospital in St. Pete wants to accommodate Aaron and begin using this procedure for their little patients.  This means: buying the machine, training on the machine, and transferring Aaron's care.  All of this sounds simple, but is not.  The machine costs hundreds of thousands of dollars.  A technician from the manufacturer has to come to St Pete to train the nurses and be present for the first two procedures of an actual patient (Aaron).  AND it is the holidays.  I don't foresee any of this happening any  time soon. 

This year for Christmas, I will be alone in Orlando while Aaron and Michael are in Cincinnati (I will start working full time in Dec).  I don't even think we will be able to have Serena for the holidays at all.  This is sad.  However, tomorrow is Thanksgiving, so I am going to be thankful for all that we have instead of what we don't.  We wanted Aaron to get photophoresis and he is.  We wanted to have our son alive and he is.  Some day (hopefully soon), our family will be home again with the children playing like children should. 

Wednesday, November 14, 2012

Stressful Times

Things are not good and they are not bad.   We are just going through a stressful time.  Michael has been studying very hard for his annual training and his ATP exam (FAA requirement).  This test would be hard under any circumstance, but he is working and then took care of Aaron full time while I went home to work for four days.  Bless his heart, he had the nurses quizzing him while Aaron got his infusion yesterday.  His exam will be Thursday and Friday.

I will be going back to work full time in December.  This is a huge source of stress for many reasons. Unfortunately, we do not qualify for any sort of assistance and we cannot afford for me to be out of work any longer.  I do not mind working at all.  However, we fear that this could jeapordize Aaron's health.  We will be moving him back home.  Last time we took Aaron home his health was compromised so severely that he spent most of the time inpatient and then had to be medically flighted back to Cincy.

We discovered that St Petersburg has the ability to do Aaron's photophoresis treatments.  They have agreed to help and we are working out the details of that right now.  This will be stressful trying to work full time and travel two hours (each way) to St Petersburg two to three times a week.

Finally, we will once again have to find a babysitter.  This has been the most stressful part of being Aaron's mother.  Finding someone who we trust to keep Aaron safe and someone who is flexible enough to work with our very irregular schedule is difficult.

It is still too soon to tell how Aaron is doing.  He has gone down on the steroids a bit, but not enough to know if his new treatment is working.  He does seem to have a little more energy.  He walks again, but won't ride his trike yet.

I asked Aaron tonight if he said his prayers with daddy while I was gone. He said yes. I asked him what the prayer was.  Aaron's response "Dear God, heal my bones. Amen".

Monday, November 5, 2012

So far so good, but too soon to tell

Aaron is doing great!!!!  We couldn't be happier.  Today, the doctor said his skin looks better than it has since he got GVHD and his stools are normal for the first time in months and months.  Aaron is still on high steroids and a new medication called infliximab.  Not until he goes off of these medications will we know if the new photophoresis treatment is really working.   By the end of December, the steroids should be low enough to have a good idea how the new treatment is working.

Aaron was discharged from the hospital Thursday after doing 14 days of photophoresis.  We are now doing treatment five days a week as an outpatient.  During one of his treatments, I noticed my pants were feeling really wet.  I looked down and the bed was covered in blood.  Although I should have been alarmed, I wasn't.  At this point, after everything I have been through, a bed covered in blood did not affect me much.  Come to find out, both of Aaron's lines broke in the same location and were leaking blood.  Thankfully the lines were able to be fixed without surgery. 

Our hospital stay was not too bad.  Aaron rode his trike almost daily up and down the halls and would wave at the doctors and nurses.  He went to the PT/OT room three days a week and would cook soup in the kiddy kitchen.  He loves his food toys.  He has also started watching cooking shows on youtube.  His current favorite is Jamie Oliver making an omelet. 

Towards the end of the stay, Aaron lost interest in walking, his trike, and any kind of activity.  He still does not want to do much.  I am hoping this is due to weight gain from the steroid.  He is also in desperate need of playmates. 

Halloween was a bust.  Aaron refused to wear his train engineer costume.  Child Life put on a parade with people in costumes and went by the patients rooms so they could look out the window.  However, Aaron was hooked up to the photophoresis machine and could not see the parade from his bed.  There is always next year and I BELIEVE Aaron will be healed and able to go trick or treating for real next year.

Tuesday, October 23, 2012

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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Monday, October 22, 2012

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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Friday, October 19, 2012

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...

Monday, October 15, 2012

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.


YouTube Video

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Friday, October 12, 2012

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. 

Friday, October 5, 2012

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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Tuesday, October 2, 2012

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!

Friday, September 28, 2012

Out Of Jail But On Probation

Aaron was released from the hospital on Tuesday since he is doing well and very stable. Thankfully the steroids work for him. He is eating a ton again thanks to the steroids. He is currently off IV fluids and tube feeds. This means extra sleep for everyone. Woo hoo!

We are not out of the clear any time or any year soon. The doctors say he is showing signs of chronic gvhd and it will take six months to a year or longer to clear up. Chronic gvhd ususlly burns out by five years post transplant. They will be switching around his medications a lot over the next few months and want Aaron to stay local until he is stable on the new regimen.

Aaron is better than ever. He is really happy and enjoying life. I don't think he has been this good since before his chemotherapy last December. The doctors are amazed at how quickly Aaron recovered; they said it is rare to see a patient respond so quickly. He is happier than ever. Makes us wonder how bad he has really been feeling up until now.



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Sunday, September 23, 2012

What a Delight

I can't explain in words what a joy today has been. Mike was in town. I got to workout, shower, and blow dry my hair. I couldn't have started the day off better. Wish I could do this everyday.

Ok, this isn't really about me. I got back to the hospital at ten and we had mat time. Aaron wanted to play hungry, hungry hippos with mom and dad. A HUGE thank you to the wonderful person who recommended this (sorry I can't remember who). We had a blast. Tons of laughter. Then he played with his plastic food toys (he got them from speech therapy and will be sad when he has to give them back). He was feeding the hungry hippos. Aaron LOVES playing with food, reading about food, watching YouTube cupcake videos. So why does this kid not like to eat?

Later, Aaron wanted to look out the window and wave at everyone. He would see someone and wave at them and laugh. But that was not enough. He had to go out in the hall so he could go around to everyone and wave at them. I think my jaw is still stuck open in shock. This is coming from a kid who yells "I don't say hi!" to anyone that even looks at him.

I am so very thankful that he feels better, but I know it is drug induced. Once he goes off the steroids, we will have the same struggles as before. This kiddo still needs tons of prayers for healing gvh or as Elizabeth would say, we need to kick some gvh butt.



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Friday, September 21, 2012

Getting Better

Aaron improves every day. He even ran a short distance today. He had to run to get away from the monster (mommy). This is a game he learned from one of his nannies. He has even laughed a little.

His vital organs and blood chemistries remain fairly stable which reassures us that he is not in a critical state right now. Thankfully, we got to Cincinnati when we did and they were able to halt the progression of his gvh. He hasn't had a fever in three days and he hasn't had diarrhea in 24 hours. Yay!!!!!

We learned that he now has gvh in his mouth and possibly down his throat. All of his gvh has improved greatly since being here. He will likely remain on steroids for awhile. His body still has to fight off gvh. The steroids are causing him to eat and this will help his GI tract heal. They removed his IV nutrition already since he eats like a champ. He is getting too huge. This is not good, but we will take it any day over gvh.

Aaron is starting to come alive and he enjoys all his fun new activities. He is becoming a little more active each day.



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Tuesday, September 18, 2012

Aaron's Status

The doctors decided Aaron has mild gut gvh. They have him back on steroids and he is responding well. His diarrhea has decreased. A separate issue is that his gut does not absorb nutrients. They said that his norovirus scarred his gut allowing the gvh to take over. We are basically going back to the beginning. Aaron will be on IV steroids and then switched to oral steroids once he improves. Then we will have to wean the steroids and then cyclosporine. He cannot develop his immune system until both these drugs are gone.

His started shutting down the past week. He hasn't been able to stand or walk and he barely talks. This morning he woke up with his head kinked to the right side and could not move his neck. I could not understand his speech. He mostly mumbled.

We had occupational therapy, physical therapy, music therapy, speech therapy, and massage therapy all work with him today. My sister got him a cat piano that he interacted with and I got him a hungry hungry hippos game. By the end of the day, he asked for his iPad. I made him stand up beside his bed to watch and out of nowhere he started dancing! He was stopping his feet, shaking his bum bum, and waving his hands in the air. After that, he started chattering like a little chatterbox.

YouTube Video

I am using all of the suggestions people have made and I think it is working. He is getting away from the boredom of the hospital room and opening up. Again, THANK YOU!!!!


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Saturday, September 15, 2012

Test Results

The results are coming in from all the studies and still little answers.  Here is what we know.

All the blood and stool cultures are negative.  He is even negative for Norovirus and Campylobacter, which he had been positive for in the past.  He had a full body scan to detect anything that might be missed from blood tests.  Everything looks great.  He had a full GI scope under anesthesia with a biopsy.  The initial scope looked good accept for a small red area.  The GI is inflamed which is causing the mucus.  Today, the initial biopsy results show that it does not look like GVH.  However, his colon has marked atrophy (deteriorated).  He has barely eaten and drinks so little for such a long time that his GI tract is shutting down.  They also think that the colon has some scarring as a result of the Norovirus.  A full eye exam shows no signs of infection or GVH.

What we do know:  Aaron is screaming and crying throughout the day (not normal for him at all).  He is itching horribly without relief.  His skin GVH is flaring up and dying down throughout the day.  He has a fever almost every day.

The doctors think that the diarrhea is occurring because his colon does not work.  Everything that goes in him comes right out without being absorbed.  They have put him on an NG tube to try and get the GI tract working again.  He is also on IV nutrition since he is not absorbing nutrients himself.  This problem will take a very long time to resolve.

He has an infection on his tongue that does not clear up.  It is likely thrush, but they have been treating it without success.  This could be causing discomfort in his mouth and possibly all down his throat.  This could be one reason he does not want to eat. 

Although, we should be sighing with some relief, I am not.  The doctors have no idea why he has fevers and they do not know why his body is shutting down. 

A HUGE thank you to all of you.  I asked for help and I am amazed at the response from you all.  Some of you have great ideas to get him going and others of you offer such words of encouragement.  I can only hope to be able to return the favors to each of you if you ever have a time of need.  THANK YOU!!!

Friday, September 14, 2012

Aaron Needs Your Help!!!

Aaron is not good.  They have done endless tests on him.  They cannot detect any infections in his stool or blood.  A full body scan came back without any issues.  Today they did a full scope of his GI tract.  His GI tract looks pretty good.  They did a biopsy and the results will come back soon.  The only likely thing at this point is gut GVH.  Although the scope did not look bad, the biopsy can still come back with GVH.  At this point I just want an answer because he is shutting down.

He will not eat; he will not drink; he does not talk; he does not play.  He just wants to lay in bed without stimulation.  I rarely ask for help, but I really need it right now.  Please be creative and help us out.  I need to find ways to stimulate Aaron.  I need activities for him to do, things that are engaging.  For example, crafts with stickers or making paper airplanes.  He does not like to color with crayons and he does not like coloring books.  We do not need any big toys or anything expensive.  He does not need any more movies.  I want something that will require his brain to be active that is fun.  He does not have a lot of energy.

I know I am asking a lot, but I am not creative and I have to get Aaron out of this.  The doctors are working hard to fix his body, but no one is helping with his mind.  I feel like I am losing my son and it scares me to death.

Our mailing address in Cincinnati is:

Ronald McDonald House
Wolsey Room 78
350 Erkenbrecher Ave
Cincinnati, OH 45229

If you do not want to mail anything, but have suggestions, I would appreciate that too.  Thank you all for your love and support.  We have been through a lot and gotten through it.  We will get through this as well.

Not good

Aaron is not good right now. He is undergoing many tests this week. They will not start treatment until testing is complete. He has lost is interest in everything including trains and his iPad.

He will not eat and drinks very little. They have put an NG tube back on him.


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Tuesday, September 11, 2012

Aaron's first plane ride

With a father that is an airline pilot and a grandfather who is an ex-fighter pilot in the air force and then a Southwest Airlines captain, I never would have imagined my child's first plane ride would be a hospital to hospital transfer via a medical plane.

Please do not be concerned. This is actually prayers answered. The hospital in Orlando is not capable of caring for Aaron. He needs BMT experts and that is what he will get. This experience over the last month is a testament to why we chose Cincinnati in the first place.

I don't know what the future holds for us. This could be a short stay or we may stay for months again. Time will tell, but we will make our decisions based on what Aaron needs.




The transition was incredibly smooth. Today is September 11th and I can only imagine all the brave people who helped during the crisis so many years ago. We had a whole set of heros for just one little boy. Aaron was taken by ambulance to Orlando Executive airport, then flown by the nicest pilots to Lunken airport, and then carried by ambulance to CCH. In all, eight emergency personnel and pilots brought Aaron safely from Florida to Ohio. We are so very thankful to these people who do more than just their job.

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Monday, September 10, 2012

Dr Levy

Today was a productive day. Dr Levy was on service and we love him. He admittedly says he knows little about BMT, gvhd, cyclosporine, and how to treat Aaron. Yet he is the best doctor Aaron has ever had here!

Aaron's lead doctor was on service over the weekend and did NOTHING! Aaron came back positive for a bacteria and he would not treat it. His IGG level was 254 (dangerously low) and he did nothing! I begged for them to do something, but he does not want to make a decision.

Dr Levy got Aaron on treatment and called Cincinnati three times to clarify what should be done and set up a medical flight to get Aaron back to Cincy tomorrow.

Aaron's fevers are on the rise and I do worry. I am hoping that because this is a bacteria, they can kill it with antibiotics. Aaron is unable to get rid of viruses because there aren't treatments for most of them.

Thank you all for your support. We need it!



This is Aaron doing his own mouth care and laughing.

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Sunday, September 9, 2012

Campylobacter

Just got word that Aaron is positive for campylobacter in his stool.  In healthy people, this is usually self-limiting within one week.  For immune compromised patient, this is not the case.  If this spreads to his blood it can be life-threatening.  I won't know any more until tomorrow.

I feel numb.  I keep thinking that nothing more can happen to this kid, but it does. The hard part is that he is starting to understand everything.  I know we will make it through all of this.  Please keep him in your prayers.

What do you think? If a man owns a hundred sheep, and one of them wanders away, will he not leave the ninety-nine on the hills and go to look for the one that wandered off?  And if he finds it, truly I tell you, he is happier about that one sheep than about the ninety-nine that did not wander off. In the same way your Father in heaven is not willing that any of these little ones should perish.

Saturday, September 8, 2012

Another ER weekend

My heart breaks for my son. We are in the ER again. Had to wake him out of his sleep due to fevers. We were going to wait until morning but the BMT doctors in Cincinnati insisted he go immediately. Anytime there is fever they want to check for a central line infection. He has fevers everyday, but today is higher than normal.

They will admit us and give him IV fluids and antibiotics. I don't know if we will go home this time. I have a feeling they will send us straight back to Cincinnati. I am ok with that. Aaron needs better care than what they can provide here.

Prayers for gvh to go away forever are welcome.

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Wednesday, September 5, 2012

Complications and lackIng sleep

Things just don't seem to be letting up in the Wolsey house.  

Aaron had his surgery.  He was an add on, since the nurse breaking his central line was not a scheduled event.  They made him stop eating at midnight but did not get him into the OR until after 2pm the next day.  He was begging for food and milk.  We did our best to distract him.  The surgery was done and we got home just in time to give Aaron his night meds and go to bed.

The next morning and ever since Aaron looks like he has scoliosis.  His left shoulder is raised up towards his chin and his right shoulder is hanging lower.  We brought this up to the doctor and of course they are not concerned.  This has been the last straw in a heartbreaking series of events over the past few weeks.  I dont even know where to begin to fix this problem. I thought the surgeon should have been consulted but that is not happening.

Aaron has diarrhea 5-7 times a day.  I have to wake up every couple of hours to change him.  We are both exhausted and not getting quality sleep.  Now that I am working again, I spend almost every day off at the hospital.   I am beyond sleep deprived and becoming very emotional.

Thankfully Michael is home for a few days.  I think this has helped lift Aaron and my spirits quite a bit.

Hoping and praying we can make some forward progress soon.  There has been way too many setbacks lately.

Wednesday, August 29, 2012

Double lumen taken out

Aaron had a double lumen central line put in prior to his chemotherapy in December. He had medicine running through both lines most of the time for awhile. The central line is surgically placed so that Aaron does not need to be poked each time they take blood or give IV meds. One of the lines broke today while the nurse was trying to take a blood sample.

They are unable to fix the line. This central line was placed in Cincinnati and Orlando has a different brand. If we were in Cincy, they could fix this without surgery. Unfortunately, they don't carry the parts here and therefore, Aaron will undergo surgery. This brings on a risk of infection. :(

Aaron has been close to needing a blood transfusion but has narrowly escaped this until now. His hemoglobin is too low for a surgical procedure. Aaron had to get ivig and a blood transfusion in preparation for surgery. They cannot get all of that done today.

With a broken central line (a very serious issue) they will not let us leave the hospital. Therefore, we get to enjoy a little more hospital appreciation time.




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Sunday, August 26, 2012

Skin looking better... Thank goodness

Aaron's skin became the worse it has looked since we were discharged from the hospital back in march.  At this point, the biggest fear is Aaron getting chronic gvhd.  This is usually irreversible and often deadly.  They gave Aaron a large dose of steroid yesterday in the ER and his skin is looking much better.  This is a really really really good sign. The problem is that with his gvh flare ups, we haven't been able to get him off of the immunosuppressive drugs.  He has to get off these drugs before he can recover from all of this transplant stuff and before I can breathe a sigh of relief.  

Aaron will be on a ten day course of steroids.  I am going to take this time to take a break from worrying.  There is nothing more I can do until the steroids are over.  If they work great. If not, we will be heading back to Cincy. 

There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever.
Mahatma Ghandi

Saturday, August 25, 2012

Another ER visit

Yes, we spent another night in the ER.   Aaron's skin has gotten worse and very quickly.  I spent an hour or so researching chronic gvh online until I was shaking and scared to death.  I believe the article stated a 50% survival rate and some possible debilitating complications in survivors.  I called Cincinnati and they wanted me to take Aaron to the ER immediately for steroid treatment. We will continue steroids for ten more days. If this doesn't help, we will definitely be heading back to Cincinnati.

I reached my breaking point and broke down. I wanted to give up and I wanted to be done with all of this. So I decided to wave my white flag and surrender.   God is just going to have to take over for awhile (I need some sleep).

Friday, August 24, 2012

Norovirus, hospitalization, and eye issues

At Aaron's doctors visit today, I told everyone happy Monday morning. They corrected me and said it is Friday. This is my life. I don't even know which way is up anymore.

Last Sunday, we took Aaron to the ER. He had low fevers and diarrhea for several days. He has had these symptoms off and on for months now. They hospitalized him and discovered he has norovirus. This is likely what he picked up when my dad was here several months ago and would explain the bouts of fever and diarrhea that come and go. He has no immune system to fight this off. Fortunately, his IVIG has helped keep it in check a little bit and someday when he has an immune system he will be able to fight this thing. This is what people catch from the cruise ships.

The positive spin on this is that now Arnold Palmer treats us like we have some deadly horrible disease and requires Aaron to be rushed to a room immediately and they wear masks and gowns and gloves. This is how a BMT patient should be treated, but no one but the BMT team seems to understand. The doctors and nurses at AP are wonderful and now we are all on the same page. Yay!

The hospitalization was three days. Aaron left looking much better than when we came. They pumped him up with fluids and a round of steroids and he looks great.

We saw the dermatologist (finally!!!). Of course, Aaron's eye looked great that day, but she saw the picture. She said it looks like eyelid dermatitis and she is not concerned. She gave us a bunch of creams to use if needed.

Finally, some more positive news. Aaron's labs are better than ever. His WBCs have been increasing on their own and Aaron hasn't needed the stimulant drug. Aaron's RBCs were on the decline as a result of the stimulant drug. He was one day away from needing a blood transfusion and miraculously the RBCs have started to go back up.

Other than the scary GVH, we have no other issues to worry ourselves about.

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Wednesday, August 15, 2012

The Plan

Cincinnati is finally corresponding with the doctor in Orlando and they are agreeing with all my decisions.  We did go to the eye doctor and they did not know what is going on with Aaron's eye.

I have taken on the role of Aaron's doctor.  I decide when he gets labs, what time of day, which labs to take, when he gets his infusions, how to treat his complications, and everything else.  I even diagnosed his eye problem.  I believe it is atopic dermitis.  This is not a life threatening issue and can be treated, but may not go away for awhile.  Aaron will see a dermatologist next Wednesday and we will see how well I am doing with my diagnosis and treatment.  It is sad that I have to take over with all his care, but my mother would be proud.

Because of Aaron's diarrhea, he is likely not absorbing enough of the cyclosporin (his most important med) to reach therapeutic levels.  Therefore, we increased that dose.  He also got a booster of steroid today.  The steroid will help with the diarrhea and itching.  These are signs of GVH and the steroid may alleviate that (hopefully).  On the down side, we expect Aaron to be raging for the next few days. 

I have gone back to work.  My days as a stay at home Mom are over.  I hate to admit it, but I am very happy to go back to work.  Today I worked in a cubicle; I put on headphones and jammed to some great music while working for 6 hours.  This was a great break!!!!  I am only working 30 hours a week.  Working allows me a much needed mental break and then I am a much better Mom when I am home.

I apologize to anyone that is worried about us after I said I was being taken to collections.  I need to clarify.  I am upset because this was Arnold Palmer Hospital's fault.  They processed the bill incorrectly and told me not to pay until it was reprocessed.  I never heard anything from them again until I got the collections letter.  We do have money in the fund to pay for this and I am working again.  I spend so many hours of my life in the hospital with Aaron, taking care of Aaron, and dealing with bills, insurance companies, hospitals, home health care companies.  I stay on top of everything to avoid situations like this.  That is why I got mad.  Please do not worry that we do not have money to pay our bills.  We will be fine.  We always find a way.  But thank you all who have been concerned for us.

Sunday, August 12, 2012

Things Are Not Good





Where to begin...

I have spent countless hours on the phone this week with insurance issues. Every one of Aaron's transplant bills were incorrect. He has a transplant contract that all of his bills must be processed through and Cincinnati did not do this. I also found out I was sent to collections over a bill that was processed incorrectly. Aaron has two insurances. Last I heard they were reprocessing the claim.

I find it insulting that I am sent to collections. My husband and I have had many struggles over the last few years. When he lost his job, I worked overtime to make ends meet. I have never in my life paid a bill late. My friends, family, and the amazing people I have never met have also donated to Aaron's foundation to help with medical bills. We have always found a way and this really upsets me.

More importantly, Aaron's healthcare is not going well. He is itching all over, has bouts of diarrhea, his lips peel off every day, he has patches of dry skin, red and swollen eyes, and his skin is several shades darker. When I contacted Cincinnati, they said I must defer back to Aaron's local doctor. The local doctor says Aaron shows no signs of gvh and that he is fine. Everyone of these things are signs of gvh. Then I tried to go to a different doctor in orlando that does BMT. Aaron was turned away due to doctors code, they won't see him unless his care is released by his other doctor.

Michael and I have made many calls over the weekend and there will be a decision made about his care tomorrow. If Cincinnati still won't work with us, we may have to drive back there to be seen or else find a new BMT doctor here to take over his care.

There are many other issues going on, but I will leave it at this. I am trying to find a positive in the mix of all this, but right now I can only say: I am thankful to have my son still with us, I am thankful to have such a supportive husband, and thankful for all my friends who keep me going.


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Monday, August 6, 2012

Back at Arnold Palmer





We are back at the local children's hospital, Arnold Palmer for our first appointment. Aaron is enjoying his YouTube videos of trains again.

Aaron is very disagreeable and has been for months. He says no to everything. A little girl was watching him get weighed on the scale.

Aaron: "go away" he says to the girl.
Me: "Be nice and say hi."
Aaron: "No! Who is that girl?"
Me: "She's a pretty little girl."
Aaron screams: "NO, SHE IS NOT PRETTY! SHE IS NOT PRETTY!"

I thought I could die.


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Sunday, August 5, 2012

Train bed

Aaron is playing trains in his new train bed. He is adjusting really well to home. He has slept by himself every night without crying. Yay for Mom.


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Saturday, August 4, 2012

Welcome Home Aaron



The ride home was interesting and took us awhile to get the hang of the new routine. We stopped about every thirty minutes for the first three hours.  Fortunately, the weather was great and the rest of the drive went pretty smoothly.

When we got home, Aaron was in awe with all of his toys. He went from toy to toy to toy not knowing what to play with first.  We have been home two full days and Aaron hasn't asked to watch the iPad or TV once.  We have watched hours of cartoons every day for the past eight months. I was afraid he would turn into a kid that sits and watches TV all day.  I am very thankful he likes his toys again.   He also has room to move now.   He runs, climbs the stairs, and dances a lot.

Our lives are back to how they were pretransplant.  In fact, Aaron's immune system is worse now than before.  Aaron can't be around other people.  We do not allow visitors yet and he can't be in public places.  As long as Aaron does not have complications, he could be off of his immunosuppressive therapy in December.  This would allow his immune system to improve and our lives will slowly become normal.  

Thursday, July 26, 2012

PT & OT

Aaron has made huge strides with his physical therapy and occupational therapy.  When he first started outpatient therapy, he would sit in my lap and cry.  He would barely move and could hardly walk.  Now he runs all over the room and kicks balls.  I am so proud of this kid!
Making music with his toes
Swinging with Ms. Beth
Walking the balance beam
Riding the tricycle with Ms. Abbey

Climbing up stairs is very, very hard for Aaron.  His reward is getting to go down the slide.

Aaron had to sit and stand from this chair 10 times.  He loves the red chair.

Wednesday, July 25, 2012

Our bags are packed but not going home




We were packed, boxes shipped and ready to go home. Yesterday, we got the news that we are not being released after all. Aaron's white blood cells and neutraphils have been plummeting for several weeks. The doctor told us two weeks ago that he will treat it intermittently with a stimulating drug as needed until the new immune system gets stronger and works itself out. Yesterday, out of nowhere the doctor changes his mind and wants to do more lab values to come up with a schedule for the stimulating drug. This way we do not have to go in to the hospital every other day and check on the labs. This is a really great idea. However, it could have been done weeks ago. Hmmm... We have been so patient, but this last ordeal has made me want to scream.

Things have been a little tough lately. Two amazing Moms lost their beautiful daughters last week. Today, I was walking into my room and my neighbor has her daughter in a wheelchair. The Mom is on the phone trying to call for help as the daughter is throwing up blood over and over. All I can think is I have to get away quick because this could put Aaron at a HUGE risk of all kinds of issues. I felt like a jerk not helping this poor Mom. I did call the front desk and got a manager up to her right away.

We also got a notice in our box that Whooping Cough is on all time high levels for children at the hospital. This is super contagious and I have definitely heard several kids coughing at RMH lately. We don't feel like we are providing Aaron with a safe environment right now. We need to take him home.

I had to go buy Aaron some toys and puzzles. Poor kid. Everything was packed up and shipped home. We have been talking to him a lot about going home and I am surprised how much he remembers. He remembers his toy train table (of course) and his slide with the red tunnel and planes in his room.

The doctor said we can leave Friday, but with our schedules, we won't be able to leave here until next Wednesday. Fingers crossed.

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Friday, July 20, 2012

Better than ever

We are counting the days til we go home (5 days)!  I am trying to pack, but that is very hard with a two year old following around at my heels all day.  We will ship most things back home and pack the car with the rest.

Serena left to go back to her Mom's on Thursday.  We miss her.  I was surprised at how bossy Aaron became with her here.  He tried to tell her what to do all the time and he would get mad when she didn't listen.  They both need to learn to share.  The visit was tons of fun. 

Aaron's health is as good as we could hope for.  Liver and kidney numbers are still slightly abnormal but within a range that we do not worry too much.  The white blood cells are still pretty abnormal, but we are told that those cells will come in eventually. 

He is almost off the steroids.  As the steroid dose is decreased, his personality gets better and better.  He finally sleeps on his own again without screaming.  Sleeping is still a problem though.  He is on IV fluids to regulate his electrolytes and I have to change his diaper every two hours.  This wakes him up and then he wants me to stay with him.  I am not getting enough sleep at all. 

His hair is starting to look good.  He still has some bald spots. Aaron's face is thinning a little.  He has only lost one pound and really needs to lose a few more.  They say the weight will come off slowly.

We have gone from watching trains to chasing trains.  We go to our normal train spot.  Once we see a train we drive faster than the train to other spots to see it again.  We even found a train yard that Aaron loves.  Aaron is going to miss his trains when we get back to Orlando. 

Wednesday, July 11, 2012

Two Weeks and Overjoyed

I can hardly believe the news. The doctor says we can go home two weeks from today!!! I feel like I was just told I won a million dollars.

I can't wait to go home and get back to our old lives (still not normal lives). I have been talking to my job about starting to work again. Please pray for us that we can find a good nanny for Aaron so that I can go back to work. We need someone we can trust to look after Aaron and give him his twelve medications on time.


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Monday, July 9, 2012

6 months, 7 months... who's counting




Aaron dressed like a construction worker

It has been 6 months since Aaron's transplant and we have been in Ohio over 7 months now. Our transplant team is making preparations for us to come home. They have to find a doctor to oversee Aaron locally and set up home health care. Aaron's doctor in Cincinnati will still call the shots on Aaron's care until Aaron is probably 30 years old. We will be heading back for follow ups frequently.

Aaron is still doing ok. His personality and energy are better than ever. He is a happy boy who is obsessed with trains. He tells me things like "Mommy diesel electric locomotives don't have coal bunkers because they are not steam engines." He asks all kinds of questions I cannot answer. I just bought him a book for adults that explains about how all types of trains operate so that I can answer his questions. He will love it.

Aaron's liver numbers are up and down but so close to normal that I do not worry. His kidney numbers are up and down but on the road to recovery in the distant future. He will never regain his original kidney function. However, his kidneys should achieve a near normal level without any long term complications.

Our latest concern is his neutrophil and WBC counts are bottoming out. He was nearly hospitalized last week for this. They gave him gcsf which helped his numbers increase artificially but will not solve the underlying problem. The doctors are unsure why this is happening and we will undergo yet another round of watch and wait.


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Tuesday, June 26, 2012

Summer is here




Summer just wouldn't be the same without a visit from Serena!  We are thrilled to see her again.  She is taller than ever, but still full of all the same energy.  Aaron has enjoyed playing with his sister.  He seems to think she came just to play trains all day with him.  

Serena made a sticker chart to put next to her brothers.  She is quickly filling up the butterfly with stickers since she is very helpful around here.  She also gets a sticker each time she finishes her workbook pages.

 We have done lots of activities since Serena has been here.  This picture is of the car ferry we took from Kentucky to Ohio.  She is enjoying the Ronald McDonald House.  She has seen a magic show, won many prizes playing Bingo, saw a french horn and harp player play Disney music, and she went to the Zoo with her Daddy.  She even enjoyed the few days we were in the hospital.  She got to paint and then play with her own baby doll.  We danced to music and made all the nurses laugh.
 

Tuesday, June 19, 2012

Day+138 Inpatient

We made an unscheduled visit to the clinic yesterday because Aaron has been vomiting lately. His appetite is decreased and he does not eat or drink enough. They did blood work and found his kidney numbers were higher than they have ever been. Based on all of this the BMT doctor decided to admit him and begin the highly specialized practice of "watch and wait."

 Aaron's GVH is coming back on his skin and the doctors are concerned that the vomiting and loose stools may be a sign of GI GVH. They want to rule out all other possibilities first and then they may do a biopsy to decide. The biopsy would be a surgical procedure under anesthesia. We really hope it is not GI GVH (graft vs host disease) because that does not usually lead to good outcomes.

All of Aaron's meds were switched to IV and he was given fluids overnight. His kidney numbers are better today but still not great. They think part of his problem is dehydration, but more concerned about GVH.

 We are trying to make the most out of our hospital stay.  The kids did some nice paintings.  Child life came by with some toys.  Serena got a baby doll to play with and Aaron got a dump truck full of fun things.

Speech therapy will come by today to try and get Aaron to eat more.  Hopefully he will get PT and OT as well to get him moving around the room.

Sunday, June 10, 2012

Thank goodness for avocado

Someone once told me that humans could survive on avocado alone. I hope that is true. Aaron is following in his uncle Kerlan's footsteps and only eats one meal a day. The only thing he will eat is cheese quesadilla with avocado. Amazingly, he still has not lost any weight.

Aaron's steroids have been lowered significantly which results in a lowered appetite. I really hope he will eat more soon. I am afraid of what will happen when he gets tired of quesadilla and avocado.


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Friday, June 8, 2012

Please, Please, Please Can We Go Home





We are ever so thankful for how blessed we are. We have a great place to stay here at the Ronald McDonald House. Aaron is doing super well. His kidney and liver numbers are almost normal. He hasn't had any signs of graft vs host disease in weeks. His energy level increases daily.

But... We want to go home! Mike emailed the doctor and asked if there was any way we can go home sooner than September. We haven't heard back yet. There is not enough room for Aaron to run around in our room and he is not allowed to go out of the room to play like the other kids here.

We are saddened this week. The little boy in the ICU passed away last night and Jill, the teenager, is not doing well. She needs a miracle right now. Thank you all for praying for them and their families.

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Monday, June 4, 2012

A Really Really Nice Weekend







My Dad came to visit for the weekend. This is the first time we have had a visitor since we have been here. I so enjoyed the company and loved spending time with my father. Aaron was happy to play trains with his Grandpa Gary.

We spent the day exploring some shady places we can go walking in Ohio and Kentucky. We decided Kentucky is a lot nicer than Ohio.

Aaron is doing great. The better he gets, the harder it is to stay. He needs more space to play and run around. Aaron's potassium keeps falling and we continue to increase his supplements.

As we decrease his steroid dose, Aaron's appetite goes down drastically. We are lucky if he eats one meal a day. He is not drinking enough either. I have a feeling the doctor will increase his overnight fluids.

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Sunday, May 27, 2012

A Day of Prayer and Running

 Aaron learning how to kneel in prayer in the Meditation Room at the hospital.

 

Aaron's first experience at a Catholic style chapel.


The day started as usual.  We woke up.  I unhooked Aaron's IV line and he got his 10 morning medications.  We attempted breakfast, but Aaron wouldn't eat.  Then he threw up.  I was worried and called the doctor.  Of course like everything else, we will watch and wait.  Then to my surprise... Aaron was running all over the room laughing and playing.  I decided he needed to get out of the room and get his energy out.  He ran for almost 45 minutes!  I found a couple of places in the shade outside and then some isolated places inside. 

We went to the hospital and explored the chapel area.  First we went to the Meditation Room.  We knelt down and prayed.  There are many children that need our prayers, but several have stuck out lately and we wanted to take some time to pray for them.  We ask that you please take a moment to pray for them as well.  Jill had her transplant around the time of Aaron.  She is in the ICU with an infection that is resistant to antibiotics.  Both of her sisters have also required BMTs.  Rashik is an infant who's BMT did not work and is in the ICU with lung problems.  Our next door neighbor here at RMH has a 20 year old with cancer of the hip that has spread.  A few days ago, his mother was driving him to a clinic to preserve his sperm before chemotherapy.  While driving they were in a head on collision.  He broke his hip and is in a full body cast.  And lastly, there is another little boy that is close to our hearts.  He is also affected with hyper-IgM (like Aaron) and had is transplant about a week ago.  We pray for him and his family as they continue through this journey and all of its ups and downs.

This evening, Aaron still had more energy to get out.  We went to the shaded patio and played hide and seek.  Aaron is not good at keeping his eyes closed while I hide, so I had to be a little sneeky.  We had a blast.  He ran around for another 20 minutes and screamed when I told him it was time to go inside.

Saturday, May 26, 2012

Lake Nona Community Bazaar


What a success!  The fundraiser was held at Spring of Life, the Methodist church down the road.  Serena has attended VBS there two years in a row, and most everyone knows her. 

Lori is superwoman.  She arranged food trucks, including a smoothie truck and bakery truck.  Publix came out to cook hot dogs, which I heard were delicious.  DJ Corinthian got the crowd jamming with his tunes.  A police officer doubled as a face painter at the last minute when the original woman cancelled.  There was a henna artist, a caricature artist, and vendors selling art, bags, make up and more.  Shaun Murray, a four time world champion wakeboarder, displayed his talents by singing with the children.  I heard he was a huge hit!

Lori managed to have gift certificates donated for the raffle and various items for a kids raffle.  She even  reorganizing after two major last minute cancellations.  The only thing Lori could not manage to pull off was getting Aaron, Michael and I home for the event.  We are sad we could not make it, but ecstatic about its success.  The event raised over $1000.00. 

THANK YOU TO EVERYONE THAT HELPED, DONATED, AND WENT TO THIS AMAZING EVENT!!!

Friday, May 25, 2012

Michael's Big News!!!!




Michael got a call yesterday from the National Marrow Donor Program.  HE IS A MATCH!!!!  Someone with Leukemia may need Mikes bone marrow.  We couldn't be more excited.  They seem very concerned that Mike has been to Mexico many times.  He goes several times a year with his job (he is a pilot).  We will see if they end up using him or not.  They want him to do the testing within a week's time.  We cannot think of a better way to give back.  What a calling Michael has been given. 

There are people who die without ever finding a match.  This does not have to happen.  Being placed on the registry is super easy.  Follow this link and you will be one step closer to being someone's life saving match.

http://marrow.org/Join/Join_the_Registry.aspx



Wednesday, May 23, 2012

Diarrhea

I don't think Aaron has ever had diarrhea. Diarrhea is never a good sign, but it is especially a problem during BMT. Almost every kid gets it in the first few weeks, but not Aaron. Today it came out of nowhere. We are praying it is nothing. Possibilities could be a virus or gut GVH. At this point the doctors are going to wait and watch (the philosophy here at CCH).


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Friday, May 18, 2012

Life is Good Right Now

I came home for the weekend to work at Publix. I will work Saturday and Sunday. Since they did not need me today, I spent the day working in the house.

We are putting in hardwood laminate flooring. Anyone who has been to our home knows that the carpets look trashed. The previous owners somehow destroyed the carpet of this brand new home in only two years. We have tried everything to clean the carpets and they do look much better. However, carpet is not safe for Aaron and who knows what could be lurking in ours. The floors have to be done at least two months before Aaron comes home and then I will have the house professionally cleaned.

I spent the day moving everything upstairs and out of the way. I also realized that we still have a crib in Aaron's room. He hasn't slept in a crib since we left home six months ago. I will have to get him a new bed.

We have a lot to do to prepare for bringing Aaron home. But this is exciting. There is a lot more joy in preparing to bring him home than there was in preparing to leave for the scary transplant.




This picture was taken a couple months ago with Mike and Serena (we miss her terribly).

A really amazing mom named Lori has spent the past few months planning a huge event called The Lake Nona Bazaar. This is a charity event in Aaron's honor. There will be several food trucks, a cafe/coffee truck, bakery truck, Disney DJ, henna artist, face painting, and booths with jewelry, garage items, and lots more. This is amazing!!!!!




I am sad that I will not be able to attend. It sounds super fun. She is even planning children's activities. The foundation will help advertise for free on the radio, tv, and newspaper. I went to McDonald's today and saw the flyer hanging up at both entrances with Aaron's picture on it.

Btw... Support your local McDonald's. They have been soooo good to us. If you have spare change consider dropping it in the box for the Ronald McDonald House.

Sunday, May 13, 2012

Reflection

Wow!  I just went through all of the pictures since we left home for Cincinnati.  I know we have been through a lot, but reviewing it all in 5 minutes seemed overwhelming.  This is one of my favorite pictures.  It reminds of the little boy we had before transplant.  His favorite thing to do was run.  Now, he can hardly run.  In fact today he is limping and I am concerned that he has injured himself.  We used to struggle to get him to eat; now he eats almost as much as we do. 

I have to remind myself why we decided to do this transplant.  We truly want the best life possible for our son.  Without transplant, his life would likely be filled with many more infections, ICU stays and a short life span.  Now he has the chance at a full and normal life.

I saw a promotional ad for a motivational speaker today.  It hit me very personally.  "Instead of saying 'I have to', say 'I get to.'' (Jonnae Taylor)  So many people say I have to go to work, I have to go to the grocery store, or I have to study.  There are those out there that only wish they could do any of those things.  Some day Aaron will say "I get to play outside" or "I get to have friends" or "I get to have a sip of my Mother's drink" or "I get to go swimming." 

Saturday, May 12, 2012

National Train Day

Aaron "Mommy what you drinking?"
Chandelle "soda but it is yucky"
Aaron "oh it's kinda like medicine"

Keep in mind Aaron has never complained about taking any of his 19 medications. He takes them like a champ and doesn't make faces. I guess his true feelings came out today. :-)




We made this train in celebration of National Train Day. We went to see trains go by twice today and watched Chuggington and Thomas the Train. We also played with his toy trains. So really, today was just like any other day for us. Lol.

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Friday, May 11, 2012

Boredom setting in

Things around here are really starting to get boring.  The few activities that we have found to be safe for Aaron are getting old both to Aaron and his parents.  We need to get creative and think of some new things.  We did enjoy ice cream in the park Thursday evening.  We sat in the shade and did not let Aaron touch anything.  He sat on my lap and we had strawberry ice cream with M&Ms.  Aaron did not like the M&Ms, so I got his.  The park was nice with no people around which made it more comfortable for us.

A week ago one of our BMT friends took their son home to Florida.  Next week four more of our BMT friends are going home.  Most of the kids that were transplanted around the time of Aaron have gone home or are going home very soon.  We are trying to focus on the positive and not be discouraged, but we so badly want to go home. 

Aaron had two checkups this week.  His skin GVH is getting worse again.  His skin is the worst it has been since we left the hospital.  The doctors are still lowering the steroids and hoping it will not get worse.  Otherwise, we will have to go back up on the steroids.  Going up on the steroids means being here longer and more complications for Aaron.  His liver numbers are getting worse as well.  His kidneys remain about the same.  Hopefully, things will be better next week.

Saturday, May 5, 2012

Playing Drums

video
This was the first time trying out his new electric drum set.  Aaron loves to play again.  He laughs all day and plays and dances.  He hardly wants to watch TV at all any more.  He is almost 100% back to his normal personality.  I love this kid!!!

Thursday, May 3, 2012

I love you Lord, heal my kidneys





Since the day we found out about Aaron's kidney troubles, we have prayed. Aaron says "I love you Lord, heal my kidneys" several times each day. The good Lord has heard little Aaron. His kidneys have improved by 50%. At this rate he could make a full recovery and possibly soon!

This picture is of Aaron playing with his SpongeBob bubble wand on the patio of RMH near our room on the 2nd floor.

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Tuesday, May 1, 2012

A beautiful weekend

Thunderstorms appeared off and on all day Saturday.  We went to the mall for our morning walk.  Aaron did great and walked quite a bit himself.  Michael bought a 1000+ piece train from the Lego store.  Aaron and Michael spent the whole day working on the train and I was able to catch up on other things. 

Sunday we ran errands in the morning and then dropped Michael off at the airport.  After a long nap, Aaron wanted to play for the first time in months.  We got on his play mat and played trains for a long time.  He did not have any rages all weekend.

However, he did cry himself to sleep which was heart wrenching for me.  We have been working with a behavioral therapist to help Aaron become more independent again.  Our goals are sleeping and eating on his own.  She assured me that after one week, he should be sleeping without crying as long as we followed the plan.  I hope so.  As far as eating, he is doing better.  He will eat some things on his own and he taught himself how to cut his cheese with a fork and knife. 

Monday we went to clinic for labs.  His liver numbers are almost normal and his skin GVH is getting better everyday.  His kidney numbers are slightly improved.  His WBCs and ANC (two numbers that are very important post transplant) have fallen drastically.  He is currently getting therapy to help improve his platelet numbers since they do not increase.  He has developed an antibody that attacks his own platelets.  His body still has a lot of fine tuning to be done.