Aaron's Hyper IgM Journey

Tuesday, January 31, 2012

A Little Reassurance

The doctors today are very pleased with Aaron's progress.  His numbers that correlate to his immune system are within the range they like, even though they have been trending downward the last week.  They are not concerned.  His skin GVH has been very responsive to the steroids and looks much better.  However, he now looks like he has been tanning by the beach for a week without sunscreen.  He was started on a medication that should decrease the EBV levels to zero within the next two weeks.  All of these things are promising.  He is still very irritable, not talking much, and won't get out of bed.  Steroids are awful!

On a brighter note, Michael came into town and gave me half of a day off.  I was in the middle of doing laundry and a RMH employee asked if I would like to have a massage.  There had been a no show.  I was hesitant knowing I had a million other things to do, but I said yes.  It was wonderful!!!  A one hour full body massage for free.  Michael has a friend that lives near by.  They met up this evening to hang out for a couple of hours.  This was a good day!

Monday, January 30, 2012

GVH (Day +27)

Aaron was diagnosed with graft vs host disease yesterday.  He has a red raised rash over his entire body.  They doubled his steroid dose to help.  Aaron became combative again and was hard to control.  He started talking again yesterday, but still won't get out of bed.  He hasn't walked in over a week.  This has been a hard week.  I am terrified of GVH; it ranges from mild to deadly.  However, the doctors say some GVH is a good thing.  It means that his transplant is working.

I am so thankful Marsha has come into my life.  She had a transplant several years ago and she is able to provide a calm that no one else can.  She is living proof that there is normalcy in our future.  Thank you!

Saturday, January 28, 2012

Trying Everything (Day +25)

Aaron is itching like crazy from a rash. The doctor keeps saying it is from dry skin, but it looks worse and worse each day. It may be GVHD. He is opening his eyes a little, but he mostly keeps his eyes closed all day. He still won't get out of bed or play.

No one can tell me what is wrong with Aaron. We have tried pain meds and nausea meds. He is getting stool softeners and now we will try itching medicine. Every day I wake up hoping he will get better.

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Friday, January 27, 2012

Prince with a pink pacifier

Aaron still feels crummy. In fact everyday is a little worse lately. He is grinding his teeth so hard that we encourage him to use a pacifier. By the end of each day he has ground down the pacifier with holes in it. The hospital keeps giving him pink pacifiers.

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Wednesday, January 25, 2012

Good Days and Bad Days (Day +22)

We have as a lot of ups and downs this past week. Aaron was entirely off his pain meds last Friday. He would leave the room to walk and go to physical therapy. He played and was returning to his old self. The past two days he hasn't wanted to get out of bed, play, or watch tv. We are putting him back on pain meds to see if that helps.

He also won't eat. Poor nutrition increases his chance for graft vs host disease, which we want to avoid at all cost. He got a feeding tube in place a couple of days ago. He already coughed it out once and we had to replace it.

Last night he woke up screaming in pain, desaturating, high heart rate, and rapid breathing. The doctor came and said he does not know why this is happening. It may be a flare up of his parainfluenza.

He also came back positive for EBV yesterday. Right now his levels of virus are low. They will watch it closely.

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Sunday, January 22, 2012

A+ for Aaron (Day +19)

The doctors gave Aaron an A+. He has no infections, his organ systems are all working normally, and he is walkingu around. They are very impressed with his progress. 

Friday, January 20, 2012

DNA Results (Day +17)

Aaron's immune cells were tested. They are 100% donor cells. This means that his transplant worked!

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Getting Out (Day +16)

Aaron's white blood cell counts have been high enough for several days that he is allowed out of his room. Because he is so strong, the physical therapist wanted to bring him to the therapy room. Overall, Aaron enjoyed this. He is not as willing to try new things as he used to be. He would not ride on the Thomas the Train toy. However, he surprised us all and walked all the way back to his room. I can't wait for the day that he tells me "I want to run!" again.

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Building up strength (Day +15)

Aaron had lost most of the strength in his legs from being in bed a week and a half. The physical therapist brought in a Spongebob table. Aaron did not want to sit in the chair at first. He screamed. We moved his trains to the table and then he became very interested and decided to give it a try. Now he loves sitting in the chair.

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Monday, January 16, 2012

Aaron is Robust (Day +13)

Definition of Robust: full of health and strength; vigorous

The BMT doctor on rotation this week came to see Aaron for the first time. He said with slight amazement, "he is really robust." I can't think of a better compliment. For this stage of transplant, Aaron looks great. Other kids are frail and subdued. Not Aaron, he is talking, laughing, and looks great. Always a proud Mom.

Sunday, January 15, 2012

Napping with Mom (Day +12)

Aaron and I have been hanging out a lot the past few days with Daddy gone. Watching TV, playing trains, doing flashcards, and taking naps. We are the best of buddies. I love my little man!

Saturday, January 14, 2012

Fluid Retention (Day +11)

Aaron is still retaining fluid. He looks cute with his bald head, chubby cheeks, and double chin. He has gained over 2 pounds in 5 days. He can't even fit his shirt over his belly.

Friday, January 13, 2012

Cells Are Growing (Day +10)

Yesterday Aaron's white blood cells started increasing in numbers. The doctors look at these numbers to see if the transplant is taking and how well Aaron's immune system is building up again. His numbers doubled from yesterday. He is still far from a normal immune system, but things are going right on track.

Aaron's fevers are subsiding, but now he is retaining fluid.

Thursday, January 12, 2012

Fevers (Day +9)

Aaron has had some horrific fevers. Starting Tuesday night, he started getting fevers up to 108 degrees. He maxed out on the amount of Tylenol he could get. The only other option was to use wet washcloths. The fever lasted through the night and began to wear off Wednesday afternoon. Then we started all over again Wednesday night, this time reaching a high of 109.4. None of the doctors have seen a fever this high before. They weren't overly concerned, but ordered a cooling blanket to help. Finally, by morning his fevers wore off again. It is 9:40pm and his fevers are starting all over again. Yikes! Poor little kid.

The fevers could mean two things. First, he could have an infection. Every time he gets a fever they take cultures. The cultures take several days to grow out. However, the doctor said that as bad a Aaron is, if he had an infection it would probably show pretty quickly. So far, no infections have grown out in culture. The second possibility is that he is having "engraftment syndrome." This occurs as his new cells start growing and can cause fever. His numbers have started to increase a little. This is good news!

Tuesday, January 10, 2012

Nothing But Compliments (Day +7)

Today was great! Aaron woke up himself. He was talking and wanting to play.

He had compliments all day long... Wow, he looks like he is four. I can't believe it has only been 6 days from his transplant and he is up and looking good. He is really smart for his age. What a handsome little man, we say that to all the parents but we really mean it for Aaron.

Aaron ended the day with a fever for unknown reasons. They will do labs to see if he has an infection. He is covered up here in his favorite blanket because he was shivering.

Monday, January 9, 2012

Playing Again (Day +6)

Aaron got out of bed twice today to play on the mat. We pulled out his trains. He played with them a little bit and wanted me to play with them while he watched. He couldn't really walk on his own. His legs are a little shaky. He will have to build back up his strength. He also spoke a little more today than the past few days. He did not require any medication to calm him down today. Today was a good day!!!

Saturday, January 7, 2012

Hair falling out (Day +4)

Aaron's hair is falling out. The whole back side of his head went bald in a matter of hours. He also looks like he has a major receding hair line. We decided to cut his hair instead of letting it fall out and into his eyes and face. He is still adorable.

Aaron woke up today combative again, but we are now giving him a medication to calm him down. It breaks my heart to have my baby on all these heavy medications. However, he is much more peaceful and hopefully not in pain. He slept most of the day. The nurse said things will get worse before they get better. I think it is best that he rests for now. And Mommy is doing much better. Yesterday was tough, but I knew this wouldn't be easy.

Friday, January 6, 2012

Mommy is not tough enough (Day +3)

This is the worst day I have had with Aaron his entire life! Since the second he woke up he was screaming, thrashing, and hitting me. I had to be right by his side to prevent him from hurting himself. He managed to jerk his head back into my chest and nose. He scratched up my arms and kicked me in the legs. He hit the back of his head several times against the bed rails and his face thrashed down on the rail once. By 2:00, I broke down in tears and asked Michael to come back from work to help me. Of course, he didn't hesitate and is on his way.

I think this is being caused by a combination of his steroids and pain medication. Steroids cause "Roid Rage" and most kids get this. However, Aaron seems to get worse when they give him pain medication. We have tried 3 different kinds so far. They finally turned off the pain pump for a few minutes and Aaron fell asleep. Right now he is sleeping and I am taking a minute to dry my tears and regain strength.

Wednesday, January 4, 2012

Transplant (Day +1)

Today started off pretty rough. Aaron had been vomiting a lot from his chemo. We started giving him phenergan to help with the nausea. The phenergan caused dystonia. Dystonia is spasm of the head, neck, jaw, lips, tongue, and eye muscles as well as abnormal movements and postures of the limbs and the trunk. His speech was also slurred and disjointed. I was very scared when I saw this. I asked to speak to the doctor, but the doctor wouldn't come. Instead, he told the nurse to stop the phenergan. This reaction is very rare and they only see it once every two years.

Aaron finally started becoming himself again right before the transplant. This was a huge relief. The transplant went well. They hung a small bag that looked like blood (you can see it behind us in the lower picture) and let it slowly drip into his central line. This was not much more than a blood transfusion. The donors cells will slowly make their way into Aaron's bone marrow and slowly begin to multiply. We should see results in about 2 weeks.

Tuesday, January 3, 2012

Thank You (Day 0)

Thank you Aaron's donor. We do not know your name or where you live, but we know that you are amazing! This morning you had surgery to remove bone marrow for our son. Right now you may be in pain and recovering. We thank you for the selfless act of giving part of yourself for our son. This donation will allow our son to live a long and healthy life. May your life be blessed as you have blessed ours.

The Wolseys

Monday, January 2, 2012

Last Day of Chemo (Day -1)

Today was a better day. Aaron slept most of the morning. He is getting a medication to reduce the graft vs host disease. This medication caused him to have fevers and hives. In the afternoon and evening we played a little bit. Overall, today was a good day!

Sunday, January 1, 2012

Happy New Year (Day -2)

Aaron is not getting much relief from his vomiting. Today included many episodes of vomiting, fever, rapid heart rate, rapid breathing, and lack of sleep. I am hopeful tomorrow will be better.