Pumpkin Pickin'

Mom and Dad are visiting this week (yay!), and we are having lots of fun exploring. On Saturday Jeff needed some peace and quiet to work on his car, so the rest of us packed up the minivan and went to kill time and find a pumpkin. For simplicity's sake we went back to Honey Hill, as I knew the way, I knew the kids would enjoy it, and most importantly, I knew the donuts there would be good.

The weather was not as nice as my parents would liked, you will note that my mom is wearing my winter coat, but since it was 54 degrees out we all managed to survive. (Now pretend you hear my dad calling out, "The accu-weather real feel says it was 45.")

We decided to prioritize, so we got donuts first. They were awesome, of course. Then we went on a hayride and picked a pumpkin from the patch. The kids had a great time roaming and trying to find the perfect pumpkin. Since we were a bit late in the season they had to settle for pretty good on one side. It was better than rotten and warty. Then, since it was late in the afternoon and we practically had the place to ourselves, we were able to request an extra long hayride through the apple orchard. Now, when I asked if we could go on a longer ride I meant maybe three minutes extra, but the man in charge treated has to a ride around the perimeter of the farm. It was really quite long. The upside of this was that the kids agreed we could be done hay-riding, well, kids minus Tommy. Tommy could hayride forever.

We wrapped the trip up with a visit to the animals and the very sad looking hay bale maze, then piled back in the car with our pumpkin and extra donuts. Success!

That's Our Pickle

(Nic is the pickle.)

Update on Mary: CT Results

We've been deliberating how to discuss the results mom got from her recent CT, because what it comes down to is that the results weren't great, but they also could have been much worse. The cancer has grown, both the tumor on her pancreas and the spots on her lungs, but the growth was very minimal, and the past two weeks her CA-19 marker (cancer count) has gone down slightly. After reducing her chemo dose she has been able to get her full chemotherapy treatment sequence for the past two months. If her cancer marker does not decrease significantly in the next month or so a change in treatment will be necessary.

Please pray for wisdom as she makes decisions regarding her future treatments. Please pray that the treatment she is currently on will continue to be effective for as long as possible.

Mom wants you to know that she is so grateful for your continued prayers.

Apple Donuts

Since it's Fall, and we live in the Midwest, we went apple picking. In my alternate dream universe, apple picking is when you go to the orchard and in exchange for your labor, you get to pick loads of delicious cheap apples for making apple sauce, apple butter, pies, crisps, and so on. In the reality, apply picking is when you pay someone an exorbitant amount of money to do all the work of picking apples. Thus, we go for the novelty and the donuts and do very little actual apple picking. Honestly, if the kids were older and better at picking I would (and will) find a legitimate pick-your-own place and coerce everyone into picking loads apples. Right now they are not exactly discerning when it comes to which fruit they choose, so it is much safer to have small amounts of guided picking supplemented with tractor rides around the orchard and viewing farm animals.

A friend from church recommended we try a Honey Hill Farm in Waterman which is about an hour away from us. It had the right ratio of apple picking to extra activities (I'm not into going to "orchards" that are actually carnivals), and admittance to the orchard and all the activities were free. While the bells and whistles were few, the kids were very happy with what they had, and we had a lovely afternoon together enjoying the sunshine, and, of course, eating apple cider donuts (as far as I can tell, the donuts are the real reason everyone is so enthusiastic about apple picking).

Tommy Gets Glasses

Update on Mary: CT Scan Time

Today Mom goes in for a CT scan. Unfortunately this scan has been ordered because her CA-19 marker (aka her "cancer count" has gone up quite a bit. She was able to get all three rounds of chemo last time, but only barely, and not getting the chemo with regularity seems to be making a difference in the cancer's activity level (as measured by the CA-19). Please pray that the cancer will not have spread any further than it already has.

It is very probable that Mom is going to need to change up her chemo routine after this month. Please pray for wisdom for the doctors, my mom and my dad as they discuss her possible treatments moving forward. Mom continues to battle this cancer, and we are thankful that the possibility of further options exists.

Mom is fighting so hard, it's hard to hear that she isn't winning, especially after having adjusted to a "new normal" with the cancer being well contained or shrinking for so many months. Please pray for us as we digest all of this.

Many of you have probably heard that Mom has had the blessing of meeting yet another grandchild. Jordan Paul Cox (JP), was born this week! Here is a picture of Mom and her newest bundle of joy:

Checking in on Nic

It's been a while since I've updated on Nic's health, and since he had his bi-annual hematology visit this week, I think it's time. Nic continues to do incredibly well. His blood work came back even better than we expected. His hemoglobin was 10.6, his fetal hemoglobin was 28.1, and his retic was 6. Those are fantastic numbers for someone with homozygous sickle cell disease . It is especially worth noting that his fetal hemoglobin has been stable for over six months. Since he came home it has dropped by about 2.5 percent every six months, so we were expecting it to be close to 25% this time. We would be over the moon if it stabilizes at 28%. If this trend continues it is likely that he will have a milder sickle cell course, although SCD is a pernicious and unpredictable disease so one never knows. We think that he had his first sickle-related pain after the last time he was in the hospital, but we can't say for sure because he still has a hard time communicating when he is in pain. It was not so severe that it required medical attention, but he was up at night complaining that he hurt. Also, he was very anemic during his last illness and was extremely lethargic for a few weeks afterward. It was difficult to see how much his exhaustion impacted his quality of life, especially knowing that he will deal with severe anemia repeatedly throughout his life. However, that only lasted a few weeks, and since then he has been our regular energetic and cantankerous little pickle.

Nic's growth has been fantastic; he has beat his curve and is now in the 75th percentile for height and over fiftieth for weight. His spleen is completely soft, he has no jaundice, his heart and lungs sound normal, and he is otherwise looking good. If his yearly transcranial Doppler comes back clean then we will be set. Please pray for this, his health is so good I am nervous about it. Honestly, whenever we get a really great report I remember how well his initial physical in the US went, and how the doctor told me that pending blood tests (which he believed would be normal) that Nic was extremely healthy...and then he wasn't.

We are very thankful that Nic's disease course has been so mild, and I want to stress how good we have it so that those of you who aren't familiar with sickle cell disease understand that most people with SCD have a much harder time than Nic. I just got back from the SCDAA annual conference (which was AMAZING), and I'm always struck by how easy we have it compared to the stories that I hear from other parents and individuals living with SCD. We have an incredible hematologist who listens to our concerns and answers our questions thoroughly, Nic goes to a beautiful hospital with new everything and free valet parking at the ER (seriously, this is the best), and we have a wonderful local support group (SCDAI) that has embraced us and taught us so much. Many people with SCD struggle with far greater complications like stroke, intense and extreme bouts of pain, leg ulcers that last for decades, respiratory issues, organ damage and failure, blindness or impaired vision, joint failure, and of course, constant, chronic pain. It is hard to meet people who cope with these things every day knowing that this could someday be Nic's reality, but so inspiring to hear how they have fought through many obstacles to accomplish amazing things. We hope and pray that Nic will never reach such a hard place. It is very possible that better therapies will allow people with SCD to have easier and healthier lives. But if nothing comes of all the research and new drug trials, and if his disease progresses, we hope that he will have the faith and fortitude to fight.