The Line in the Sand

Hi Everyone,
Hope you're having a good day.
We got fairly good news today. The doctor didn't see any new growths for the second time in a row. However, there was a lot of hemorrhaging around the area that has received so many cryotherapy treatments for the last year. If this clears up, we will be in pretty good shape as long as no new growths occur (which, of course, is not a guarantee, as we have learned over the past year after David finished his chemo and growths have occurred off and on). If the hemorrhaging doesn't clear by our next appointment (in 6 wks) we will have to take the eye. The doctor does not want to risk missing tumor growth because it is being clouded by the blood where he can't see it. If we come back in 6 wks and the hemorrhaging is gone, but new growth has occurred, the eye has to come out. He said that it has taken about all the cryotherapy it can take and the bottom line is that there is still a malignant tumor in his eye that we can't mess around with.
Maybe this doesn't sound so positive as you read it…It really is for us, though. Kim and I are both at the point that we are ready to get it over with and remove the risk altogether. Of course, if things stay clear, that will be good too, but we'll have to monitor very closely, which has been fairly nerve-wracking.
David did well as always. Since there was no cryotherapy, the exam was quick and he woke up happy. He's asleep in his crib now, peaceful with a full tummy.
Thanks for all of your support during this!
Rob

Friday The 13th

That is the day of David's next exam - as long as he is well enough. He has been fighting a cough and runny nose since Christmas, so we are praying hard that he will be well enough. It isn't helping that the weather seems so moody. One day cold as ice, next day warm enough that my crocuses are blooming.

Other than the runny nose and cough, David is very happy. He spends most of the day trying to mimic my words. He's really picking up a lot! We are all doing fine. The big kids just brought home fabulous report cards yesterday! I am so proud of their hard work at school!!

I hope all of you are staying warm,

-Kim

Still Waiting

David had another exam this past Monday. The doctor didn't see anything, but there hadn't been too much time between this exam and the last one, so he may not have been able to see it yet.

We were grateful for this news. We were also grateful that David didn't have to have any cryotherapy.

We go back in one month to look again.

-Kim

Exam Results

We took David in for another eye exam on Monday. The news was so-so. There is a section of the tumor that is very stubborn, and won't die no matter what we do to it. The doctor did a whole lot of freezing on it this time - which made Dave's eye very swollen and red. This doesn't seem to bother him, though. He is only bothered when we try to put the ointment in it to keep it from getting infected.

The doctor told us that he just isn't sure that this is going to work since this section of the tumor has survived everything else we have done to it. His words were, "There are only so many more times that I can do this before we need to make a decision."

It may surprise you, but this news wasn't earth shattering to me. It was pretty much more of the same, and I have been prepared for the possibility of having to remove Dave's eye anyway. This is not a sure thing yet, but we will see. I think time is winding down before it is inevitable.

The good news was that his MRI from last week was clear. This means that the tumor is staying contained in the eye for now and not moving anywhere else. So, if it comes down to removing his eye, that should take care of it.

So, I guess it's not such bad news after all.

Thanks for praying and keeping up with us!

Have the Merriest of Christmases!!

-Kim

Results

David has recovered from his MRI for the most part.  He is still clingy during the day...he wants me to hold him all the time so that it is hard for me to get any work done.

The results of his MRI were very good.  The cancer is staying where it should and not moving into his brain.  This is very good news.  

We take him on Monday the 22nd for his next exam with the eye doctor.  I will let you know what the news from that visit is as soon as I can.

In other news, I spoke at length with the lady from Child Development Services.  David's pediatrician had referred us there since David is not talking yet.  Well, since our visit to the pediatrician, David has picked up a few words that Rob and I can interpret.  The CDS lady seemed to think that he was fine from the interview on the phone.  So, we will re-evaluate again when David turns 2 years and see what we think at that point.  Apparently, it is difficult for them to evaluate his speech before then anyway.  

So.....all that is left is "Merry Christmas"!!  We hope that you have a wonderful Christmas Holiday with family and friends.  We are so grateful for all that everyone has done for us. 

-Kim

Rage

We have mostly survived David's MRI this time.  These appointments are the worst.  However, I guess we got the good end of the deal this time.

The nurse in the oncology dept. inserted David's IV.  She got it on the first try, but David had already had to sit on the scale, have his blood pressure taken, and his heart and lungs listened to.  He really throws a fit each time any medical looking person even looks at him much less touches him with some medical implement (like a stethoscope).  So, trauma had already reigned supreme by this point.  This nurse was also able to quickly draw blood for his lab work - blessing.  

They were fairly quick in the Radiology dept. today - another blessing.  Last time it took forever.  David is hard to get to sleep, so that took awhile as the continued to give him more and more medicine.  Finally, he dropped off.  They didn't get 100% done with the MRI before he woke up, but the radiologist said he had enough to look at.  

David woke up with "post-sedation RAGE!!!!".  Between Rob and I, we were bearly able to keep him from hurting himself as he was flipping around and throwing himself down and screaming.  Apparently this is a common side effect of the sedation medication.  I don't think we will be able to handle this again if he gets any bigger.  I don't know what the alternative is.  

I thought we were clear of the nausea this time until we were almost home, and he let loose.  Rob is still cleaning up the van in the freezing cold as I type.  David has mercifully gone to sleep in his very own crib.  My arms and brain are exhausted.  We won't know anything about the results until at least Monday.

Thankfully, we only have to do this every 6 months.

-Kim

ps.  His next exam will be Monday, December 22.

MRI

Hi Folks!  I hope everyone is keeping warm this extra cool season.  For the first time in years, I actually had to go out and buy a real coat.  I have to admit that I am not enjoying the cold weather.  The kids look forward to snow, but I am looking forward to spring!

David had a good exam today with his regular pediatrician.  She is great, and said that mostly things are going as should be expected.  She was a little concerned that David is really not talking yet, and so we will be taking him to "Child Developmental Services" (I think that is the name) for screening at some point in the future.  She said that his not talking is likely a control thing.  David needs something in his life that he can control, and he has not needed to speak - so he hasn't.  But better safe than sorry.

We go over to Duke on Friday.  David will see the oncologists and then have an MRI.  Last time we had an MRI, it was a nightmare.  I hope this time will go better, but I am skeptical.  I think I have learned enough about the procedures to be a better advocate for David and not allow them to continue to do things that torture him - I was not very impressed with the staff I worked with last time.  David also got very very sick on the way home from the last procedure, but I think I also have some ideas of how to make him more comfortable.  

Still no word on when his next exam will be, but I am hoping to talk to the Eye Center people today to get that scheduled.  

No real bites on our house yet, but we are still hopeful.  We are in the wait and see mode, but not too impatient.  

I will update you soon!  Merry Christmas to you all!!

-KIM