So Here We Are

Where is here, you ask? It's here, just here. Everyone asks about Gavin, how he's doing. The general answer is "good", the real answer is that we are the same, so were trucking on any way we know how, but here we are still. We've made some changes, done some things the same, waited, waited, and waited some more.

We're here, still working (Garth mostly), still going to the doctor, hospital, etc. One of the things we have changed is that we are not taking Gavin to church anymore through the worst of the flu/RSV season. Gavin is free to do mostly all normal things about 70% of the time depending on his numbers and his overall feelings of wellness. Although if he were in day care, he would not be able to attend at all, if he were school-aged, he would have been able to attend approximately 50% of the time based on our tests and numbers since school has started.

We are very regular church-goers and we don't take this next decision lightly. Even for the "Bible Belt", we get impressive eyebrow raises at 3 hour church every Sunday. One wonderful and dangerous thing about church for us now is all of the little children that are there...and their wonderful parents who know that they should be at church because that is where they should be, to worship and to learn and to feel The Spirit...weather or not their kid has green boogers running down to their knees and a wet cough from a 2 year old who doesn't quite have handwashing down yet, much less the sneezing/coughing into their elbows thing to help reduce the spread of germs. I also have a very solid stance on immunizations including flu shots which I am going to just leave at this: I think we should all have both, not just for the good of your children, but also for the lives of mine and vice versa. I'm sure this will sound very preachy or blown out of proportiion (mostly for those who do not vaccinate their children), but my immunocompromized baby could die from the exact same "cold" that just gives your kid the sniffles. So here we are...I guess I should change the name of this post to "My Soapbox", although it was totally unintended initially, but HERE is where I will end it. I'm not in the mood to debate the issue, I just was going to say, we will make sure we are at church...all 3 hours...minus one or two of us for a while...just wanted everyone to know we are ok and that Gavin is not struggling with his testimony, he's just trying to do his best to get better. Loves!



***Late addition: Since this entry took an interesting turn, I recalled a rather appropriate picture I have from last winter that goes very well with the "substance" of the post.

P.S. I know at least 5 people who will actually gag and possibly vomit when they look REALLY closely at this picture of Gavin sleeping in his carseat...sorry to those of you...sort of ;-)

A Choice

Lots of my posts lately have been about Gavin and his neuroblastoma. I'm going to veer away from that topic, if only for a few short moments.

Garth and I got in a fight today. A really stupid one (like most), that I can actually remember how it started, but it's just really not worth it and although we both feel very strongly about the arguement, it's still stupid, no matter how you slice it.

While he was mad at me and pulling some pretty petty punches, I was really mad at him trying to think of even more petty punches that would hurt him way worse than anything he could say to me...luckily, before any came out of my mouth, I paused for one fleeting second and made an astonishing discovery about myself and my relationship with Garth and also with other people I love in my life.

I understand now why many marriages fail and people part ways because they get mad over something stupid or even over something not so stupid. The key is in the CHOICE. I make a choice every single day weather I am aware of it or not to be with my husband. I choose him, every single second of the day, I choose him. He chooses me too (thank goodness) and not in spite of our shortcomings, but because of them because they are what make us who we are are and without them we wouldn't be ourselves.

Thank you Garth for choosing me, every single day, especially the days it would be so much easier to choose otherwise like so many people do today.

I choose forever, every single day. And that's all I have to say about that.

On the road again...

Friday, we had a very long day at the doctor's office getting Gavin's port accessed and then we had a long wait at the Childrens' Hospital for day surgery to prepare Gavin for his alomost 2 hour MRI where he was under asethetic the entire time. We had to wait the entire weekend for the call with the results. Although we did find out right away that his Harlequin syndrome was legit as a result of the anesthetic. Good news is it only lasts a few hours.

I wish I had a goose pimple inducing announcement that miraculously Gavin's reisdual tumor was completely, miraculously gone...but I don't have an announcement like that. We got a call around 4 PM from the oncologist's office telling us to be prepared the next morning at 7:30 to be admitted to the hospital for the next 3-4 days for his next round of chemo. The report stated that:

**Warning....VERY technical talk to follow, skip to Impression, if you feel impressed to do so**
"Compared to the MIBG scan of 07/30/11 showing increased uptake at the right supraclavivular area, MRI of the thoracocerviacal spine of 07/27/11, and the preoperative MRI chest of 07/25/11 what is likely port of right jugular catheter results in metalsusceptibility artifact. This and HASTE imaging hampers evaluation. Minor atelectatic change is seen at the posterior lung bases. Previously demonstrated right chest tube has been removed. Small residual area of soft tissue with abmormal enhancement post contrast in the right supraclavivular area incompletely encasing the proximal right vertebral artery just caudal to the thyroid level correlates with the abnormal focus of uptake on MIBG and is similar in apearance since MRI of C-spine on 07/27/11 but more clearly demonstrated on the previous study. The soft tissue thickening along the lateral margin of the right vertebral artery at this level is improved since 07/27/11, but this is difficult to certain. Ultrasound may prove clarification. The area of abmormal enhancement is best demonstrated on T1 axial postcontrast view, page 18 of 20. This measures about 8mm. No further abnormal enhancement is seen. Visualized liver and spleen are unremarkable. Adrenals are not clearly imaged. Normal bone marrow pattern"

**Impression: Small focus of soft tissue thickening with enhancement in the right supraclavicular space partially encompassing the right proximal vertebral artery. This is likely residual neuroblastoma. Appearance is similar or slightly improved since 07/27/11.

So we learned 3 things" 1) The tumor is still there and pretty big. 2) Hospital food really isn't all that bad when Mickey Mouse Clubhouse is on. 3) For us at least, the more chemos you get, the more vomit Mommy gets to clean up!
Luckily, I have a doctorate degree in and therefore speak mumbojumbo, so the first part gives me a bit more information than the impression, but suffice it to say: The tumor is still there, and it is about the same size as before (following the surgery to remove most of the tumor).
The good news is, it is not growing. We will do 2 more rounds of chemo (one more since we just finished one yesterday) and then we will do the MIBG scan that will show if the residual tumor is actually active tumor. As you can see, the tumor that was left was not removed because of it's placement surrounding the vertebral artery and it's proximity to the right carotid artery.
We are all doing fine. Garth Lee is doing well in school and he won his first Jiu Jitsu match! He really likes it and I hope that he sticks with it. Garth is still working like crazy and we are trying to get some maintenance stuff done around the house that has fallen by the wayside. I work this weekend, but we will be getting busy Monday! Isn't it RUDE that people still want to get paid when your kid is sick! Like the bank and the electric company. RUDE! [that is sarcasm for you sensitive folks...sort of]

Thank you everyone for all of your kind gifts and words, and prayers. They are all what have gotten us through this trial. Gavin is so strong and he helps me see the good in everything, but sometimes you seem to believe grown ups more. Thank you all from the bottom of my heart!