From Stacy, 9:39pm 9/24/2010 –
Thank you all so much for the gifts, messages, cards and especially the prayers! With the initial diagnosis, Josh and I were just overwhelmed with fear and sadness, but with God’s grace and your love, we have passed the fear stage and put our game faces on. It’s time to beat some cancer with a stick!
We spent the last 2 nights in the PICU (intensive care unit). The first night the doctors worked ALL night long trying to get a really big catheter in his really small femoral artery. They finally got it after 2 sedations, 3 doctors and 6 tries. This was good news though, because he really needed the leukophoresis treatment right away. Leukophoresis happened yesterday afternoon and his white blood cell count lowered from 198 to 66 immediately, which means we don’t have to do it again and we can start chemotherapy! ( Never thought the word chemotherapy would warrant an exclamation point) The ICU nurses were super stealthy and we were all able to sleep for most of the night.
Early this morning, they did a spinal tap and a bone marrow aspiration. The tap was to check for cancer cells in his spinal fluid. They found ZERO cancer cells there! So, no radiation! Thank you all for praying specifically for that. God definitely heard you. The bone marrow aspiration was unsuccessful, because his bone marrow was too crowded with cancer cells to pull fluid from. This is not uncommon in the beginning phases and just means that the docs will have to perform genetic testing on the cells they already extracted from his leukophoresis instead of the easier to test bone marrow. Not a set-back, just an inconvenience for them.
After that procedure, he got two pick lines ( like semi-permanent IVs) placed. This procedure went great. He slept or watched his Baby Einstein DVD during the whole thing. After that, the nurses were able to remove his 2 temporary IVs and the huge thigh catheter from the leukophoresis, which gave him the freedom to move his arms and stuff. He was very happy about that.
The rest of the day, he was able to eat 2 real meals (all his favorite foods of course), play with my cell phone and all his dog toys and watch some movies. He’s still been very tired as all the different anesthetic wears off, but when he’s awake he’s as happy and cute as ever! I cherish every time he says mommom or dog and it gives me the hope that he is still a normal healthy kid under there.
With the pick lines in place, chemotherapy starts tonight. Pray that he experiences NO side effects, allergies etc, and that the therapy wipes out some serious cancer. We will be here at least 29 days starting today for the intense induction phase of therapy. However, he’s only scheduled to receive chemo on Fridays, so after the weekend he might be feeling better enough to play and see some friends!
Josh and I are doing ok. We’re gonna take some time out tomorrow and let family stay with him while we go enjoy a long soak in the UC rec center’s hot tub. The sadness comes in waves. There’s not a doubt in our minds that Jesus will cure him, we’re just sad about the journey.
Both of our works have been super accommodating. I already have a sub lined up for the entire month, and Josh’s work said whatever he wants to do is fine. It will get a little complicated when we factor in that I will have to take maternity leave in 6 months, but everybody is ready and willing to approve whatever I ask for.
Pray for us and for both of our little babies. We really don’t need anything but that for now. We’ve been flooded with food and toys and actually had to send some home today so that we didn’t suffocate in our little room. We love you all!
Stacy, Josh, Ajax and baby
From Josh, 9:59pm 9/24/2010
Filed under Info | Tags: Ajax Knoechel | Comments (4)
Yep. Prognosis is as good as it could be. He has the most common, well understood, highest cure rate, fewest side effects to the treatment kind of leukemia there is. He’s also in the best age bracket, in the 3rd best pediatric oncology hospital in the world, our whole network of friends and family lives within 20 minutes of the hospital, and we live in a time in medical technology when there is a 96% cure rate. We have pretty much everything but the leukemia itself in our favor. God has been amazingly graceful through this. Not that it’s been worth it but I’ve cried almost as much over the love and support as I have from grief. Don’t think that because we haven’t gotten back to you individually that we aren’t grateful or your text/FB/email or whatever wasn’t DEEEPLY appreciated. There have just been hundreds and hundreds of them. God is redeeming this situation in lots of ways that I can’t wait to share with you all in person. I think the bringing together of the community in this is one of the greatest redemptions I have ever seen.
Please continue to send the emails and texts and facebooks. Like Stacy said, the sorrow comes in waves and sometimes it’s incapacitating but the little buzzes in my pocket help. As far as stuff, please hold off on that for a while. Our room is small and he is surrounded by stuffed animals. We don’t snack much and share a fridge with an entire unit so we don’t have the room to store much food! It’s incredibly helpful but we hate to waste it and will be here a l-o-n-g time.
When I asked today, they said the most likely long-term effects from the treatments would be loss of bone density, propensity toward obesity, and cardiac inefficiency – I think I’ll be able to treat that myself at home, nothing a bit of heavy squatting won’t fix.
One of the things I love about being in the baby blanket business is that babies are adorable! Now, I didn’t used to think this way. I’ve had a change of heart. I used to think most babies were somewhat alien looking as they came out of the womb, but over time, I’ve come to see just how precious they are. Every baby is different, and they are all cute in their own ways.
So, what we’d like to do is feature your baby on our site! If you have cute baby pictures of your little one (and I know you do – seriously, we live in the digital age for crying out loud), then send them to us through our Contact Us link on the store. Give us a blurb about your baby and why they are the cutest in the world, and we’ll post them on the blog. To get us started, I’ll post about one of our favorite little guys, Ajax Knoechel. Here he is being adorable. By the way, Ajax is an avid Facebooker. Look him up and be his friend! : )Filed under Uncategorized | Tags: Ajax Knoechel, cute babies, pictures | Comment (0)
Here is our new favorite buddy, Henry Ajax Knoechel. He is the first baby of our best friends Josh and Stacy, and what do you know? He’s all swaddled up in his Brown Mod Circles on White Ultimate Receiving Blanket, which came from Blanket My Baby.
I was visiting Ajax for a bit today, and noticed he was resting well in this blanket. One of the greatest things about these blankets are the size. At 42″ x 42″, they are large enough to make a secure swaddle around the baby. Ajax seems to like it, and he’s drifting away to sleep land. If you don’t know why he’s named Ajax, no, it’s not for the cleaning product. He was named after the amazing Greek hero. You can see him here.Filed under Baby Blankets | Tags: Ajax Knoechel, Brown Mod Circles on White, Hector and Ajax, Swaddling, Ultimate Receiving Blanket | Comment (0)