Update

David had his exam as scheduled on Monday.  Even though the OR was very very busy that day, they took him back very quickly.  He was great in the pre-op room....just playing and laughing and getting sleepy on shoulders.  

The doctor seemed pleased, although he still had to do a little more cryotherapy.  He told us that he hasn't seen any new spots in the last few exams, but some of the old spots aren't "flattening out" like he would hope to see.  He said that he can't be sure if these spots are dead or alive, but he feels like he has to treat them just in case. He didn't give us any ultimatums about enucleation this time, so we are feeling a little encouraged.  

We get to go back again in 6 weeks.  Unfortunately, that will be right around the time that Hannah starts back into school, but, what can you do?

In other news, we may be changing our oncologist.  Our current oncologist has been great, but he is changing his clinic days to a day that doesn't coincide with David's EUAs.  This would mean that we would have to make separate trips to see him and the eye doc.  We aren't sure yet what we will do, but it has been very convenient with gas prices as they are to only make one trip.

The big kids are currently in Waxhaw playing with their grandmothers (my mom and her mom).  They are having a blast, and in the meantime, Rob and I are doing some summer cleaning and getting ready for a yard sale that we are going to have next Saturday.

-Kim

Results and Appointments

So, David had a surprise MRI a little bit ago.  Although it was a traumatic experience for us (getting IVs put in and other little things), the results were good.  They did not see any tumors other than the ones that they already knew about, so we are happy about that.

We were able to go to Wilson, NC this past week to visit with some of Rob's coworkers who were especially gracious to us while David was still on chemo.  They sent us meals each time we had to take him to the hospital....among other things.  It was so nice to be able to put names and faces together!

David has really come to like walking.  He still totters a lot, but he is getting better and better by the day.  The big kids are very excited about this new trick.

I will post more again soon!

-Kim

Now

Hello Friends,

I know it has been some time since I have updated here.  

About 10 days ago, David woke up from a nap with puss coming out of his ear.  The doctor said that he had a very bad infection in both of his ears.  We just finished up the antibiotics yesterday!  He really takes medicine very well, so that is a blessing.  The medicine gave him a very bad diaper rash, but I think it will clear up quickly now that he isn't taking it any more.

We just had a lovely family vacation over the Father's Day weekend.  We went to the beach with my parents, Grandma Goodall, Aunt Jeanne (my Mom's sister), my brother, and my nephew - Elijah.  It was a really nice and relaxing time.  David ran a fever the last full day we were there.  I am still not sure what that was about, but he seems to have gotten over it nicely.

Here is David on the beach.

He seemed to have a great time.  He crawled around like a crab, watched the big kids in the water, marveled at the waves, and ate sand.  It was fun for him.  He didn't spend too much time outside since he is prone to sunburn, but he especially loved staying inside with Grandma Goodall who spoils him.  

David's next exam is scheduled for July 14.  Until then, Hanah, Isaac, and I will be in my good friend's wedding tomorrow.  Then our little family will be at the beach again for the 4th of July.  We are going to have a yard sale sometime - which will be a lot of work, but hopefully lucritive.  It will be a busy summer.

-Kim

ps.  If you would like to see more great pictures, just click on David's profile picture (of him eating his birthday cupcake).  This will take you to our photo site!

MRI

I forgot to tell everyone that our MRI had to be rescheduled.  I still don't know when we are going to have it, although, we have scheduled David's next EUA for July 14.  

David's eye is healing very fast this time.  It was only swollen for about 24 hours, and now, it just has a few red spots in it.  It isn't tearing up quite as badly this time either.  

David has started to walk.  He still doesn't do it all the time, but over the past few days, he has been doing it more and more.  Life continues to change.

I will update again later.  We are going to be spending the later part of next week at the beach with my Aunt from New Mexico, my Grandmother, and my parents.  It will be a nice vacation that none of us have had in some time!

-Kim

One

Friday, David turned one year old.  He also had another exam.

The whole day went very smoothly.  David did spectacularly as always, and the flow of the operating room was smooth, so we didn't have to wait very long.  

The doctor found a very small spot that he decided to cryo again.  He seemed extremely pleased with the progress from the last time we were in.  We have to go back in 4-5 weeks, so that is a little longer than last time.  The only sad news was that he told us that if he needs to cryo again next time, we need to sit down and talk about the risk/benefit of continuing to cryo an already blind eye.  So, that is kind of hanging over our heads until then.  I don't know exactly when that appointment will be yet.

David is doing very well.  He caught a cold at the hospital, so he is very congested, but his eye looks great.  It didn't swell up like it has in the past, and each day it looks better and better.

I will keep you all up to date on other appointments.

-Kim

Appointments

Hi there! I just wanted to give you a little update on us. David is doing very well right now, and has even slept through the night two nights in a row, so I am hopeful that this will become a habit! He has had some tastes of table food, and now resists eating baby food, so that has been a challenge. He still doesn't really know how to chew, so I have to be creative in finding soft things that he can eat.

His eye is still not back to normal, but I didn't expect it to be yet. It still waters a lot - especially when he is in bright light.

He will have his next exam on Friday, May 30 - his first birthday. Then on June 2, we will have a follow up with the oncologists and also have an MRI to make sure that no cancer has made its way into his brain. This is mainly a precaution and not a proceedure that we are doing because we suspect anything. Still, we will likely be very nervous until we get an all clear result.

The doctor at Duke reccommended that we get both of the big kids' eyes check out. Isaac was first in line. Thankfully, Isaac cooperated extaordinarily well, and the Doc said that his retinas were "beautiful". Hannah get to take a turn in June, but we aren't expecting any problems. Usually retinoblastoma is found before the age of 5, and Hannah is 6, so it's unlikely that we would find anything, but better safe than sorry.

The other members of the family are doing well. Isaac's preschool is about to end. I think he has one more week to go, and then his summer "break" will start. Hannah goes until June 11. Then I think we will be having a visit from my Aunt Jeanne from New Mexico - those are always a treat. We have a family trip to the beach planned for the July 4th holiday, and my 10 year high school reunion is also coming up. And, as always, we will have the regular doctor's appointments for David.

Well, I must go, but we appreciate you all taking the time to stay updated with us!

-Kim

Update

David has been healing well since his last little bit of cryo. His eye lid is a little droopy now, and it tears up a lot. He will often have tears running out of that eye. I think this is supposed to clear up, but it is something that we will be speaking to the doc about next time we see him.

Our next appointment will be on David's birthday, May 30. I think this may also involve a trip to the oncologists for a follow up, but we will see. Hopefully the news will be good that day.

I am feeling a bit run down these days. Maybe all that the last year has held is now beginning to sink in. I am coping alright, but find myself much more ready to go to bed at night than ever before.

David is in the process of weaning. I need to find a way for him to sleep through the night, so that's a dilema. I have gotten very few full nights of sleep since he has entered our world, so I am looking forward to that. I am hoping that a little less dependence on me will encourage him to sleep better.

Well, I must be quick as I need to go pick up Hannah from school! Thanks for reading!

-Kim