Sweet Baby {ok, ok Big Boy} About to Turn 2 Years Old!!

 Our Simon is turning 2 years old!! We can NOT believe how fast time is flying by. I know, I know, everyone is saying that! But still. Its true! Looking back at these pictures, it is kind of crazy to remember all that we were thinking and feeling and praying about in those days. So many unknowns, so many what-ifs. Putting all our trust and our expectations and desires for a healthy baby, into God's hands. Seeing how much our faith grew and our trust in our God developed is an amazing thing. Going from the initial mind-blowing, gut wrenching shock of our baby quite possibly having a cancerous tumor, to feeling God's peace filling us telling us His way is best.

Our little fella weighing in at 8 lbs 9 oz, my biggest baby (but only by a few ounces)!

Daddy with Simon as he got his first of many sonograms.

Going home after having to spend 2 nights in the hospital while they checked him over!

Look at that tiny little guy! He didn't stay small for long!!

We kinda forget things as life goes on. Simon was born with a quite large bump on his head, but it faded after a couple months.

That fluffy blue striped blankie is still his fave! He's gotta have it to sleep!

Proud big brothers.

Even still, we know just how special Simon is. With sonograms at different intervals, his tumor continued to shrink from starting out at about 3 cm, until at 18 months old, the sonogram technician and the radiologist reading the images, could not find a tumor at all. God healed our boy. He chose to allow us to continue to raise him for the time being and entrust us with him. For that, we are so so grateful. Simon was covered in prayers from all over and we felt those and God heard those and gave us the desire of our hearts. 

We are so happy to be celebrating the 2 year mark of having Simon in our lives!! Happy birthday tomorrow buddy!

Simon 6 month update

Yesterday we saw our primary doctor and Simon had his 6 month regular check up. He weighed 19 lbs, 8 ozs. His height was 28.5 inches! That put him in the 73% and 96% for the percentiles. A big fella!

He was a pretty happy guy for the rest of the evening-even after his shots, but today he has been more crabby.

Today he had a sonogram to check on the mass on his adrenal gland. We were going in with high hopes that it was gone and they could not even find it. All the times we have been in since he was born, it has continued to get smaller, and this would have been 3.5 months since we have seen it.

Unfortunately, it had not gotten any smaller. But it didn't really seem like it had gotten any bigger either. So that was definitely good news. And everything else appeared well from the quick over view. It was just disappointing to hear that it was still there. Of course God still has a plan for our little guy and we are still hoping for the complete resolution of this tumor!

The sonogram technician did her thing, then took the images to the pediatric radiologist to look at. After awhile, they both came back and he wanted to look at it in real time. Since the mass is pretty small it was hard to get a real good look at it. He told me that in the first images he thought that it showed it was a little smaller but he wasn't sure that she had gotten all of it into the measurement. So when they measured again, he thought that it looked like it had not changed. Or if it showed a little bigger it was not significant and possibly because of the way it was measured or what not. It was about 1.5cm by 1.1cm.  He said he would have to take out the images from the last time and compare them.

I'm not sure if the pediatric oncologist will call or our regular doctor will call. But hopefully sometime in the next couple days, they will call and let us know a little more and when they would like to have Simon back in for another sonogram.

I asked the radiologist if he had ever seen one of these tumors where it gets smaller and then bigger. He said that of just the few that he has even personally dealt with, they have all gotten smaller and then gone away. None of them have gotten smaller and then bigger. But he said he has not personally seen very many because it is rare to even see these this early on.

Thank you all for your kind words and for praying for us!

Test Results

These are a couple of pictures of Simon getting ready for his ultrasound. He wasn't so sure what to think about it =)

We had a sonogram done of Simon's abdomen on Thursday afternoon around 2:00pm. Then a few hours later the surgeon said she would like a CT scan done, with contrast fluids. They put an IV in his head, which he actually did not even cry for. They gave him a little pacifier to suck on and the nurse really knew what she was doing, and it didn't seem to hurt him at all! But we had to leave it in all the way until it was time to go home, just in case the doctors would order more tests that required an IV. He cried more trying to get the tape off than he did sticking a needle in his head!

About 6:00pm a CT technician came to the room to give us a baby bottle of water with some other stuff in it that would help to show his stomach and bowels. And told us she would be back at 7:30pm to get us and Simon and go down to CT. They had me in a wheelchair carrying Simon and Matt came too.

Simon got the CT scan done and it was a really short test. He was only lying on the bed thing for about 10-15 minutes total and that wasn't doing the scan the whole time. So we were thankful that it was short! And again, he did great, not one peep out of him!

We spent a second night at the hospital and were hoping that it wouldn't take too long for the surgeon to look at the scans and let us know what was going on. But again, we had to wait all morning and into the afternoon for anything. 

The surgeon came up to our room around maybe 2:00pm and sat down and told us that, indeed it was a neuroblastoma tumor. She thought by the sonogram that was probably what it was but was still hedging just a little and said to herself "These parents need an absolute definitive diagnosis" so that is why she went ahead and ordered the CT scan. She said doesn't like to do CT scans of newborns if at all possible but felt like she needed to in order to know for sure and get a better picture of it and where it was.

It was only about 3cm in size-so it actually showed up a bit bigger by looking at it through me and into Simon. And it had good borders, it wasn't invading any other organs or seeming to cause any harm or damage to Simon at this time. We praise God that he did not need surgery immediately!

With it being a relatively small tumor, the course of action is very very minimal at this point. We are to set up an appointment with the pediatric oncologist for next week. So I am sure we will be thinking of questions to ask him.

And the surgeons office will be calling us to set up monthly sonograms on Simon to monitor the tumor. We will also be checking his urine for the catecholamines-I think monthly as well. If the tumor grows for 2-3 consecutive months or has any unusual changes that seem concerning, then we will talk about removing it. Also, if the catecholamines in his urine start to increase then that would be another reason to start talking about having it removed sooner rather than later. 

(Catecholamines are certain hormones that the adrenal glands produce. Back at the very first specialist appointment-she described them as the fight or flight hormones)

She told us that in Japan, neuroblastoma is very rampant and that all newborns are tested over there for it.  That is where she is getting their treatment plan from and how they know some of these facts/statistics. She told us that, these smaller neuroblastoma tumors, will often go away on their own. Up to 80% of the time over in Japan, they go away without any treatment.

She feels that surgery right now is a higher risk than the risk of the tumor growing/spreading. She said that she and the pediatric oncologist were in complete agreement as to the treatment plan. She said that even if this was her own child, these are the steps she would be taking. She assured us that if it was causing any problems, that they would be down in the OR right that afternoon getting it out.

Also, we think we understood her, that if it did not go away, even if it did not grow/change, that once he was older-closer to a year, then they would do surgery and remove it. 

We may call St. Jude down in Tennessee-the leader in children's cancer treatment and research-and see what they have to say as well-if this is the plan they would go with also. But right now, we feel confident that we are in good hands and are trusting God to guide us.

We were able to get started right away with our dismissal papers after the surgeon left and were able to come home last night to our own beds and be together as a family again! So nice. Simon is a complete sweetheart and so far seems very mellow. Lots of squeaking and little grunts but not too much crying. Daddy even rocked him out in the living room for a couple hours during the night so Mommy could get a little sleep without his little squeaks around =) But I love those little newborn sounds right now! So very sweet! And his big brothers and sister love him to pieces and haven't stopped asking to hold him. Lillie is just watching over him so well!

Thank you all for all the prayers and all the encouraging comments. They mean so much to us! All the verses posted helped us and encouraged us so much and just seeing how much everyone cares is amazing. We are so thankful for all our family and friends and our church and even strangers who are praying for our family!

-I will probably do a post about his birth soon but just wanted to get out an update of the test results.