Aaron's Hyper IgM Journey

Saturday, December 31, 2011

Sleepy Day (Day -3)


The yuckies finally hit Aaron pretty hard! He has been throwing up very forcefully over and over again. The doctor decided to add a second and then a third anti-nausea medicine to help him. The medication made him very sleepy.

We also learned that his transplant has been moved to January 4th. The donor's cells will not be finished processing in time for the 3rd. This should not affect anything.

Friday, December 30, 2011

Little Beckham (Day -4)

video

Aaron loved to kick his Thomas the Train ball up and down the halls of the Ronald McDonald House. One of the volunteers would call him "Little Beckham." He now has a mini beach ball that we kick around his room. He threw up pretty bad today and has started having diarrhea. As you can see, none of that is slowing him down any. He is still very happy and active.

Thursday, December 29, 2011

Today Aaron starts a different type of Chemo.







- Posted using BlogPress from my iPhone

Wednesday, December 28, 2011

Day of Rest (Day -6)

Today was supposed to be a day of rest, meaning no chemo. Aaron did not have chemo, but he did not rest well. His cold is really getting to him and he is sneezing a lot. He threw up today. This was actually a good thing. He was sluggish all day until he threw up. Afterwards, he was ready to play and jump and have a good time. He ate one french fry and one bite of cottage cheese and nothing else all day. His pants are starting to fall off of him. He still looks good and has some energy. The doctors say not to worry, so I am not going to worry.

A Day With Daddy (Day -7)


Daddy came back from working. He spent the day with Aaron while I caught up on laundry and phone calls. The day was a little rough since Michael did not know the routine. Neither of them slept much that night. I finally got a good night sleep. :) Here is a picture of Aaron's new tent bed. He calls it "the green bed." This is much better than the crib.

Monday, December 26, 2011

We are sick (Day -8)

I had a cold and got over it. I wore a mask, but Aaron still got sick. He tested positive for parainfluenza 1 virus. This is a common cold. They are going to start giving him his IVIG once a week now to help boost his immunity. The doctors are not worried and say it will pass just like it would for anyone else. Aaron has had a little sniffles and sneezing, but not bad. Other than that, Aaron has not shown any adverse effects from the chemo so far. He is a tough little guy. In fact he has eaten better today than he did the last two days. His diet consists of M&Ms, teddy grams, frosting off of cupcakes, goldfish crackers, chocolate bars, cheerios, and cheese quesadilla. Most parents would probably be horrified by this, but I am the happiest Mom in the world!!!

Sunday, December 25, 2011

Merry Christmas (Day -9)


Santa made two stops for Aaron this year. We woke up to presents in the hospital and presents were delivered to the Ronald McDonald House. We opened them slowly throughout the day. Christmas was a fun day. Aaron did not get sick at all for his second day of chemo. We also upgraded Aaron to a Posey bed. This is a hospital bed with a tent around it. This is sooo much better than his old cage crib. When he wakes up in the middle of the night, I can lay with him.

Saturday, December 24, 2011

First day of chemo (Day -10)

Aaron's transplant is considered Day 0. The 10 days before that are a count down. We finished the first day of chemo. Aaron did great! He was a little tired all day, but I think that is because he was up from 12am to 5am. The nurses poke at him all throughout the night (and day) and he does not always fall back to sleep very well. We watched Nick Jr for hours. Aaron is not eating much, but that is not too different from his normal eating habits.

This is Aaron getting his first dose of chemo.

Thursday, December 22, 2011

Settling In

We don't have a routine down yet, but we are getting there. The last two days were much better. Aaron doesn't seem to mind his caged crib. They brought a play mat for him and told us he can get out and play on the mat with his toys.



Aaron's baths are done in his crib. They are more like a sponge bath, but seem to work out well. The shower cap has a shampoo inside it. We massage his hair with the cap on, take off the cap and then let his hair dry. I LOVE it! Wish we had these at home.


The Occupational Therapist visited us today. What fun!! She quickly realized that Aaron loves to run. She hung up one coloring page on the door to the room and one coloring page on the other side of the room. They would run to one side and color then back to the other side and color. This continued for quite some time.


Physical Therapy was even more fun. Aaron is allowed out of his room today and tomorrow. After that, he is bound to his room until his ANC counts reach a certain level (this will take weeks). Aaron went to the physical therapy room and had a blast. He ran all over, played with balls of all sizes, went bowling, made music with the keyboard, and so much more.

Tuesday, December 20, 2011

The beginning of a tough road

Aaron was admitted to the hospital today and so the journey begins...

Our day started so nicely. We drove around Cincinnati in search of a good train spotting location. We found one but did not have time to wait for trains. Aaron had to be to the hospital for surgery. He had a double lumen catheter placed. This is for the chemo and numerous blood draws.

In the evening we were moved to Aaron's new room. I will write plenty more later on our new home, but for now, it feels like we have had our freedom taken away. Aaron is in a crib that looks like a cage and we were told to keep him in it as much as possible. The nurse said it is best if he doesn't run around because he could get hurt.

We were sad when we saw a family packing up their things to move out of the RMH. They had to take their two week old off of life support. Today was not fun and not a very great day. We have a lot of adjusting to do. Today we are all going to bed tired. Tomorrow is a new day.

Friday, December 16, 2011

A tough day

Since Aaron had a long day we weren't able to get his morning run in. He had a full eye exam with dilation. Two hours later, we met with the doctor. She was excellent but only brought bad news. Aaron's eye surgery was not successful in correcting Aaron's lazy eye and he will unlikely ever have depth perception. The doctor said he won't be able to be a pilot like his daddy and grandfather. I remember my father telling me a story about how he was told he could never pilot an airplane due to his vision, but he went on to become an F4 pilot in the air force and a pilot for Southwest Airlines (the best airline in the industry). We believe Aaron will be able to do whatever his heart desires.

By this time, Aaron missed his nap and his lunch. He was miserable. We had a meeting with the BMT doctor to go over the consent forms and timeline. This was our chance to get any questions answered. Aaron threw his first full-blown tantrum the entire time. He kept screaming "I want to run." The meeting didn't go well but we believe we are aware of the risks and benefits of the transplant.

Saturday, December 10, 2011

2nd Week of Testing

The second week just flew by. Monday we had more labs taken as well as stool and urine tests. Everything came back pretty good. He may have a virus in his stool called adenovirus. This is a very serious virus. However, the doctor assures us that it is found in almost everyone's stool and that they will follow it very closely.

Tuesday, Aaron had his biggest procedure yet. He was put under anesthesia. He had a bone marrow biopsy to check his bone marrow for any additional problems. He then had a bronchoscopy. The doctors looked at his anatomy and took samples of pulmonary fluid. They found a couple of nodules near his larynx. This explains the funny sounds he makes periodically. They were caused from when he was previously intubated.

Wednesday, Aaron had his infusion.

All the test results continue to be really good. Now we just wait to be admitted on December 20th.

Wednesday, December 7, 2011

All You Can Eat Chocolate Cake

Good news for Aaron. We met with the dietician today. We explained the issues we have had getting Aaron to eat. She said to let him eat whatever he wants. He can eat all the chocolate cake and cookies he wants. We need to keep him wanting to eat. During transplant, the patients often lose their desire to eat. After he recovers from the transplant, the dietician will work with us to get him back on a healthy eating plan.

Sunday, December 4, 2011

Improv Show



There is ALWAYS something going on at the Ronald McDonald House. Unfortunately, we cannot attend most events because Aaron would be exposed to other people. We love that the theater is located downstairs with a view just outside our room. Tonight was an improv show by a couple of goofy guys. They would ask a 3 year old several questions and use her responses to make up a totally wacky skit. Again, I enjoyed it. Aaron just watched trains on my phone.

Saturday, December 3, 2011

Clown visit



We were able to watch the clown show from upstairs. There is a theater downstairs. Aaron was more interested in watching trains on my phone than the clowns, but I enjoyed it!

Friday, December 2, 2011

The Rest of the First Week

The week has not let up any. In fact, I don't think I remember most of it. My goal is just to get Aaron to each appointment on time and I feel like we have succeeded!!!

Tuesday... Aaron had a PICC line placed. This allows blood samples to be taken without poking Aaron. He fussed a little bit, but got through it pretty well. We spent time with the home health nurse learning how to take care of the PICC line. We have to inject heparin twice a day to keep it from clogging or getting infected.

Wednesday... We had a visit from home health at 8:30am. We went to cardiology at 9:30am for an echocardiogram and EKG. These are usually done under sedation for this age group. However, they said Aaron is the easiest kid they have ever seen and decided he can handle it. He laid still the whole time watching Micky Mouse Clubhouse and didn't make a sound. Later, Aaron had more labs taken.

Thursday... Aaron had a CT scan of his whole body. Again, they were supposed to but him under anesthesia. Aaron sat still the whole time and did not have to be put under sedation. We are so proud of him.

Friday... Aaron had to do a 4 hour test of his kidneys called a GFR.

By the end of the week, most of the results came in and they told us that Aaron's results are the best they have ever seen in a pretransplant work up. Thank you Lord!!!

Christmas train

Aaron begs to go downstairs many times a day to see James (the train) go around the Christmas town train track.



Location:Erkenbrecher Ave,Cincinnati,United States

Tuesday, November 29, 2011

Our First Day in Cincinnati

Wow! What a day. We woke up, got ready and took Michael to the airport to go to work. Aaron and I stopped at the grocery store to get him some milk, water, and juice. We then headed to the hospital. The hospital is huge with several different connecting buildings. The parking garage is a maze to find the right parking area for the building you are going in to.

Our first appointment was for lab work. However, that was only 10 minutes of the 2 hour appointment. The first person who met us was the transplant financing/billing representative (they need to make sure they get their money). They said it is good that we have Michael's insurance for Aaron because mine has a lifetime maximum of one million dollars and Aaron would probably be dropped before we left the hospital. Aaron is an expensive kid, but definitely worth it.

Next we met with the transplant coordinator, Mat. He is so nice and puts up with me and my endless questions and concerns. We really like him!

Finally, Aaron had his blood drawn. They must have taken nearly 20 tubes. A little frightening, but they said it was only about an ounce of blood. Aaron fussed a bit, but overall was a tough kid. He was rewarded with 2 Thomas stickers and apple juice.

After this appointment, we went back to Ronald McDonald House (RMH) for lunch. I put Aaron down to nap. Meanwhile, I took our food to the kitchen. I ended up locking him in the room by himself. By the time I was able to get another key and into the room, 15 minutes had passed. Thankfully, he was still relaxing in bed with his blanket and pacifier (his favorite things right now).

We went back to the hospital for a pulmonary consultation which also took about 2 hours. This was an initial evaluation for the bronchoscopy with sedation that will occur next week.

When we returned to RMH, we got great news. We had been upgraded to the isolation suite. These rooms are usually given to transplant patients that require strict isolation. We are allowed to have food in these rooms and there is a second bedroom. The second bedroom is great since Aaron is used to sleeping in complete darkness by himself.

I spent 2 hours packing up our things and making several trips back and forth between rooms. Aaron hid one of his shoes and ran around the Ronald McDonald House with just socks on. Thankfully, I found it later in a suitcase. He also pushed the "help" button in the elevator and I had to explain to the Cincinnati Fire Department that all was ok. Aaron is so full of energy and unable to find an outlet. It is too cold here to let him out to run.

Monday, November 28, 2011

A Long Drive

We got a late start Saturday morning. We left around 10:30am. Once we hit the turnpike, we didn't go much faster than 15-25 mph most of the way to I75. We think the traffic was from people heading to the FL vs FSU game. The rest of the day was ok until we hit Atlanta. We got stuck in traffic while heading to the hotel. Aaron was great!! He watched his movies and didn't complain once. He did ask to get out and run so we let him run a few times. He enjoyed running in circles around the oversized cow.


Sunday was dreadful. We left Atlanta at 9am. From 9:30am on, it rained the entire day. The traffic was really bad. I think it was people heading back home from the holiday weekend. We had stretches of an hour or more going 15 mph. Aaron took his turn in the driver's seat. He discovered the horn and got a kick out of honking it whenever someone would walk by.


We got good news in the evening. The Ronald McDonald House had an available room for us. We were excited! A nice ending to our very long day.

Monday, November 21, 2011

Packing

Packing for five months. We will have to ship most of it since I won't have enough room in the car. But where to send... We will stay at the Ronald Mcdonald house but they have a wait list. We will probably stay at a hotel for a couple of weeks until we get in.


- Posted using BlogPress from my iPhone

Friday, November 18, 2011

Track practice

We went for a walk along the path in the park this morning. As soon as we got on the path, I said "go" and Aaron took off running. The man behind us said he is a real track star. I said it is college scholarship training. When I tried to put him in the stroller he would yell "I want to run" and take off running again. He must have run at least half a mile.


- Posted using BlogPress from my iPhone

Location:Cypress Grove Park

Sunday, November 13, 2011

Chasing the moon

Aaron spent twenty minutes running to catch up with the moon this morning.





- Posted using BlogPress from my iPhone

Monday, October 31, 2011

Halloween Fun


Fireman Wolsey ready to fill his pumpkin with candy. We allowed him to visit Aidan's house.


Aaron getting candy from Batman, Batwoman, and Robin. He was not shy in asking for candy.


Granny Carol tried to hold Aaron back. He kept running and running and running. Maybe he was afraid someone would take his candy.

After several runs back and forth down the neighborhood, I was wiped out. Granny Carol finally got a hold of him and got him to stay still for a minute. Once she let go, he was off again in the other direction. He only stopped if his candy flew out of his bucket. He would pick it up and keep running.

Friday, October 28, 2011

New Timeline

Nov 28th - Start pretransplant testing
Dec 20th - Admit to hospital
Dec 21st - Busulfan pharmacokinetics (chemotherapy test)
Dec 24th - Start preparative regimen (begin chemo)
Jan 3rd - Transplant

Saturday, October 22, 2011

Boots and Barbie







Aaron turned two and Serena will be eight in a couple of weeks. We had a combined party for the two of them. Aaron enjoyed his Boots cake and balloon. Serena loved the Barbie balloon, tiara, and cupcake stand. We had a great time. Aaron's favorite gifts were everything to do with a train. Serena loved her baby doll that she could feed and then change her diaper. We played pin the bracelet on Dora. I think Aunt Katie won... congrats!!! The rest of us could use more practice. We allowed Serena and Aidan to come to the house for the party. It was really nice to have the family over. Aaron and Serena are good about wearing the masks. I am thankful. So far we are all still healthy and have lots of fun new toys to play with. Thank you to all of those who gave him warm clothes. They will come in handy very soon.

Thursday, October 20, 2011

Eye surgery

The surgery went well. We woke up at 4:30 to be at the hospital by 5:30. We checked him in. The man checking us in kept sneezing and blowing his nose. I totally freaked out on him. I had to touch all these electronic pens after he did. I finally told him that Aaron has no immune system and can't be around someone sick. He said it was just allergies. Hmmm... not buying that story. Anyhow, after that, everything was great! The nurses were amazing and took very good care of Aaron. The surgery took one and a half hours. The doctor told me that everything went well and to come see him in a week. I sat with Aaron until he woke up. He never fussed. Once we got home, he was ready to play with his trains right away. He was fussy the next morning, but I think it is more from being tired than anything.

Wednesday, October 19, 2011

Bounce House Fun

We got a bounce house for Aaron's birthday party. However, he is getting eye surgery the day before the party and the doctor said he cannot use it for awhile after surgery. We let him play on it for awhile. At first, he was not sure what to do, but he eventually figured it out. We had a lot of fun bouncing!

Saturday, October 15, 2011

"I WANT CHOCOLATE CAKE"





For 2 weeks Aaron has been begging for chocolate cake. He had it once in his life about 2 months ago and I guess he has never forgotten how good it tastes! Finally, today he has gotten his chocolate cake and he ate it in a matter of seconds. He LOVES cake!

Thursday, October 13, 2011

Emerging Artist




Aaron's first unassisted painting. We are calling it the green spider. What do you think?

New dates

We heard back from the donor. The donor is on board with everything and willing to work with us on dates. The transplant coordinator said I need to stop worrying so much (don't know if that is possible :) The transplant will be January 3rd. We will be leaving the week of Thanksgiving to drive to Ohio. Now we need to find some warm clothes. Maybe we will have a white Christmas.

Tuesday, October 11, 2011

Eye surgery

Aaron needs eye surgery. The transplant doctor decided it is better to go ahead with the surgery now. Aaron may not be ready for a surgery for a few years after the transplant and by then the eye problem may be worse. The eye surgery is not a big thing. They will tighten some of his muscles so the eyes focus together. However, this has pushed back his transplant a bit. We are still waiting to hear from the donor to see when he/she can reschedule. We have waited 3 weeks to hear back from the donor with no response. Praying for a positive outcome soon!

Wednesday, September 21, 2011

So Many Blessing


I never asked why this is happening to us. I have wondered, but never dwelt on it much. What I do realize is that it has opened so many hearts and really brought out the good in people. People are just cheering us on every step of the way. Aaron brings so much joy to the world. Today the National Foundation for Transplants asked if Aaron could be featured in their holiday direct mail letter for their annual fund. They said he has stolen their hearts! Thank you to all those who are supporting us. The road ahead is a tough one, but we will come out ahead.

Saturday, September 17, 2011

Our First Fundraiser




Thank you Brittni, Laura, and Jeff! What a turnout. We made $375 in 5 hours. Not only did we sell tons of hot dogs, but people were generous and donated without even eating hot dogs. I ate 2 hotdogs and I don't even like them. However, I must say Laura can really cook a good hot dog. They tasted great!

There were balloons to represent all local sports fans... Gators!!!, UCF, and FSU. Laura and Brittni spent their day off to do this. What generous people they are. We are so grateful. I will be out of work for at least 5 months, probably longer. The donations will allow us to continue to provide care for Aaron during this time.

God is good and life is great. It takes tough times to realize how fortunate we are.

Thursday, September 15, 2011

Visit from Pluto


Aaron got a visit from Pluto. He had just been given benadryl and was so out of it that he barely noticed Pluto was there. Pluto gave him a bag of goodies... coloring book, stickers, and a stuffed Mickey Mouse.

Sunday, September 11, 2011

Planking Atlanta


Atlanta



What a great conference! The conference was for survivors and dealing with life after a transplant. I was the only one that went before having a transplant. I just want to know exactly what to expect and how to prepare.

I was glad to hear that about half of the parents chose Cincinnati Children's Hospital for their children's transplants. CCH is really the best place to go.

I also learned that once the transplant is over, it is far from over. He could possibly face a lifetime of complications from the transplant. However, most of the complications are manageable and would give him a better quality of life than if we didn't do the transplant.

I could go on and on about the conference, but I will stop now. I am glad I went and feel even more prepared for the journey ahead. I will definitely try to go next year. Anyone want to go with me???

Oh and about Atlanta... I am not a huge fan at all. Maybe it is because I forgot my sunglasses and the windshield of the rental car was dirty and I could barely see where I was going. Or was it the traffic lights that were so small? Or all the one way streets that wound around? Or all the people that just walk out in the middle of the road when cars are driving by?