Scare

I know it's late, but I am still a little wired from our day, so I thought I would update everyone.

I am sitting here in the hospital between my two sleeping guys. David is peaceful right now, and Rob is zonked (and it is well deserved).

We started David's chemo yesterday - as planned. It went pretty well, although we didn't get to our hospital room until nearly 5pm, and they started his 4 hours of chemo after that. He did have a couple of episodes of vomiting, but we are pretty sure that was caused by the nasty tasting medicine that they gave him by mouth. He had a peaceful night, but woke up very early this morning. Rob and I spent a short and restless night on a tiny little pull out cot (not even as wide as a twin bed). We rested as well as can be expected, though, so we were grateful for that.

David's second round of chemo was not able to start until about 1pm today. He took his first chemo med. very well. However, about 15 minutes after they started his second med, he sat up in the bed choking and sputtering and crying. He turned bright red all over and then started to turn blue around the mouth. Our nurse - Marian - was especially quick in thinking and pumped him full of Benedryl. They gave him oxygen and did several other things, and he recovered fairly quickly, but it was a huge scare to all of us. The docs said that he was having an allergic reaction to the carrier agent in his chemo. They gave him some steroids and some other stuff to make sure that there was not a secondary flair up. Then his oncology team decided to give him the same chemo drug mixed with a different carrier agent. He just finished this infusion about 30mins ago, and he seemed to tolerate it very well. He was able to be un-hooked from the iv for the night, although his port is still accessed just in case. We should be able to go home in the morning.

Needless to say, we had a scare, but are so grateful for the quickness of the doctors and nurses. We had about 20 people in the room in the matter of a few seconds. David seems to be handling things well for now, and doesn't seem to be too nauseated for the moment - other than when he had that nasty medicine. We will all be glad to get home and have a good night of sleep in more comfortable beds, but it is great that they are letting both Rob and I stay with David while he is going through all these treatments.

Thanks for all your prayers

-Kim

Starting

Hi Friends,

As I type, I am sitting in the hospital bed that David has been assigned to for his first round of chemo. He is about half of the way through his first day of chemo.

Our oncologist has been working hard on getting the right chemo regimen for David. He has been talking to doctors around the world and together with them, we have started a new chemo regimen. David will be on 3 chemo drugs, and will have chemo for two days every 4 weeks. We will be spending the night in the hospital overnight each time he has chemo so that David can get continuous IV fluids. This is to help protect his kidneys. They also have to monitor his blood pressure regularly. The fun part is that our nurse tonight is someone that knows my cousins very well, so it feels like we are with family. They are also allowing both Rob and I to stay with him all night.

Here his is in all his glory...



Thanks for all your prayers!
-Kim

Begin Again

David has endured a week and a half of testing. Now we are ready to start his treatments.

The good news is that there is no sign of the cancer spreading outside of the eye cavity. There may be indicators that there is some cancer still in the orbit, but we are going to be discussing the MRI results with the doctor tomorrow.


Our plan right now - as far as we know - is to take David to the hospital tomorrow. We will sit down with his oncologists and talk about all the tests, chemo regimen, hospital stays, etc., etc., etc. Once we understand what the oncologist is recommending, we will go right over to the day hospital and start David's treatments. As we understand at this point, David will have chemo for 2 days, but will not have to be hospitalized overnight. We are going to try to avoid the cost and headache of a hospital stay. If we see that David is not tolerating the treatments, we may have to rethink things and schedule the treatments to be in-hospital treatments, but we are hoping that we won't have to do that.

And so the fun begins.

On a different note, we have had our appraisals and inspections on our new house, and everything seems to be a go! We are super excited about moving into a house with more space, but we have appreciated Rob's grandparents' generosity letting us stay here. If you click on David's picture, you should be redirected to our picture site to see pictures of the new house. We feel really blessed to get this house in a great neighborhood and for a really great price!

I'll update you later, but right now, I need to go and finish packing for a whole day at the hospital.

-Kim

Today

This has been a very busy week. David has had a plethora of tests and exams. He's been poked and prodded and weighed and measured. He's had his new port put in, and today we get a rest. We go again tomorrow, but the break is very very welcome. It gives me a chance to do some laundry and clean up the house a little. David has been a champ. He's taken everything in stride and still has a big smile for his kids at the end of the day.

We still have an MRI and kidney study to complete before all the initial tests are taken care of. Then we will likely have a sit down with the oncologist to discuss the near future. We still don't know the chemo regimen or when we will be starting.

Earlier in the week, we put an offer on a house and our offer was accepted. It is in the same area as the last house, but in a bigger neighborhood where we already know some people! We still have to do the appraisal and inspection process, but we are hoping that things will work out.

I'll update again soon.

-Kim

This Week

Hi Friends. We are just beginning to get a glimpse of our schedule this week.

Tomorrow - David has an appointment with the eye Doctor to check up on his healing progress from the enucleation. He will then have a sedated EKG followed by an audiogram.

Wednesday - He will have a lumbar puncture, bone marrow study, and they will insert his port-a-cath

Thursday - David will see a Speech and Language Pathologist - I'm not really sure what this is for, but I am trying to find out.

Friday - Will likely be a kidney study (not sure what this entails), and possibly an MRI or CT scan.

So....it will be a busy week. David's oncologist is still meeting and conversing with doctors all over the country, and his pathology slides are being sent for a second opinion as well. I will try to keep you updated as well as I can.

Thanks for caring.

-Kim

Ten Steps Back

So, we had less than 24 hours to revel in our good news.

At about 6pm last night, David's oncologist called to let us know that he needed to see us today to go over some things that were found in a separate pathology report than we had been notified about.

Apparently, our pathologist had recently been at a conference where testing for retinoblastoma had been a topic of interest. It was becoming more and more frequent that children who had been given the "all clear" signal were redeveloping the disease. So, there is a new test that has been shown to point to a new pattern of spread. Our pathologist came back from the conference and retested David's eye for this particular pattern of spread and the test was positive. Now, this does not mean absolutely that David's cancer has spread outside the eye, but it shows high probability. There was no sign of spread down the optic nerve which is very good.

So, it is the consensus of David's team of Doctors that David undergo another round of treatment which will include chemotherapy and possibly radiation and/or surgery. The chemo treatments will include several different drugs than last time, and they will be much more intense, much more frequent, and will last much longer. We don't know the absolute specifics yet, but each heavy treatment will likely involve 2-4 days in the hospital.

Next week will be a slew of tests and prep work, and then the week after that we are hoping to start the chemo.

I can't actually tell you all how we are doing with this news, because I don't really know. I think my brain has mostly shut down. We are coming to learn that medicine is just a series of good guesses, so our best guess at this point is to continue down this road and pray that God's grace has paved the way (which we know it has!). I was hoping to have a big celebration for David's birthday and good report, but I am going to have to rethink things now. Such is life.

We appreciate your continued prayer for our family as we try to make the best possible decisions about David's care and also in finding a home.

David - as always - is just happy and bouncy and has no idea what is coming, but it certainly is fun to see him enjoy life.

I will update with more news later....when I know more news to give

-Kim

Free at Last.....

.... Thank God Almighty!!

Davids pathology reports came back clear. We were just informed, and I wanted to rush to share the good news with you all!

We have been so grateful for all of your prayer and support. Thank you a thousand times over.

This doesn't mean that we are completely out of the woods, but this is the best news possible at this point in time. We will still have to continue to monitor his "good" eye and do MRIs to make sure that there isn't anything developing out of eye-sight.

David has fully recovered from the surgery. He was really recovered the day after :-). We take him back on Tuesday for a check-up and to get a feeling for when he will be able to be fitted for a new eye!