Made it through Christmas

We took the boys to Sky Zone this morning to burn off some energy. Both of us went, since Brian's parents were still in town. We had a blast. After we were done, We headed to the doctor with Gavin, as the night before we noticed all sorts of red bumps on his body. Although we suspected it was hives from some sort of reaction, with Alexis we can't take any chances. So, we had the doctor confirm that is what it was and not chicken pox or mumps (although they have been watching a lot of hockey with dad!). The doctor said Alexis could play with the red dots and be perfectly fine. It was nice to get that reassurance.

We spent the rest if the day playing new games and even spending a little time outside, Since the weather was so nice. We took a quick break for the nurse to administer Alexis's chemo and take a blood sample. Then we were right back to playing. 

Mom took a quick break to talk to the doctors about the seizures. The neurologist bumped her up slightly in the medication and said he's glad his hypothesis of her having a lower threshold for seizures and combining that with the intrathecal results in these seizures every time. Really, you are just confirming that? I couldn't work in the science field where you have to have so many data points just to confirm common sense. 

After a nice family meal, the phone rang. It was the hospital who had gotten Alexis's blood counts back, and her hemoglobin was 6.9. They transfuse at 7, so asked us to come down to the hospital. They admitted her and finally got the red blood going around 10:30, which makes for a long night. We are glad we made it through Christmas and that hopefully it is just for one night or even a partial night!

Christmas Success

We were first awoken by Conner at 1:13 in the morning, and he was promptly sent back to bed, as that was way too early to start! Then, mom and Grandma Phyllis were the first up trying to prevent themselves from pinching the kids awake. Finally around 6:30, Conner was up again and came bounding downstairs, and his excitement lasted all day!

We opened gifts, ate a nice breakfast, and played with the kids all day. Alexis got an Easy Bake Oven from Santa, but her parents failed to have 100 watt light bulb to cook the food. You would think she would have been upset, but she was easy going, like she usually is, whereas Conner almost lost it. He was so excited to cook on his own and get to bake something. He was almost as excited about the oven as he was with his Optimus Prime he wanted. Luckily, our neighbors happened to have 100 watt bulb (who has that watt on hand!?!?!?). So, we made pretzels, and mom messed up the first recipe (apparently easy bake is too complicated for me!), but we succeeded finally on the second round. So, after much heartache, the kids finally got to enjoy a Christmas feast of pretzels baked by the heat of a light bulb!

Gavin was happy to play with his hot wheels (thanks to our same awesome neighbors who had an extra D batter, since we only had 3. Are you seeing a theme here? Apparently they were our Santa!) and his Paw Patrol. He barely would stop for anything else.

Their last present, as Laura's family tradition, was to do a scavenger hunt to find it. The kids were so excited to get clues and figure them out. They ran all over the house, the backyard, etc figuring them out and collecting the clues. When they finally got the final present of Disney on Ice Frozen tickets, I think they were a little disappointed that the clues and the game were done!

We successfully gave Alexis her chemo. We followed the process exactly as prescribed, and even remembered to clamp each time to not have the blood pouring out (thanks to Dad who remembered the one time Mom didn't). It was nice to have one on our own behind us.

Alexis did start having seizures today, for which we were watching, since she got spinal chemo on Tuesday. We will let the doctors know tomorrow. They were very curious to see if she had them again this time. I was not curious...it happens every time. Although I love our doctors and think doctors in general are very smart, sometimes I think they get too much into the book knowledge and don't listen enough to common sense. We were not surprised at all to see them and have become a little desensitized to them. Other than that, Alexis was full of energy, out of the hospital, and feeling pretty good today. We'll take that for a definite Christmas win. We have a lot to be thankful for this year!

Church At Last

Christmas Eve was spent preparing for Christmas and just having fun with the kids. All grandparents were in town by Christmas Eve to spend Christmas day with us. They were able to entertain the kids while Brian and I got trained on how to give Alexis her chemo through her IV. They left in her tubing from her port from our appointment Tuesday. So, we learned how to do saline flushes, chemo administration, and to finally hep lock the port. We ran through it, so we could do it on Christmas.

Brian's parents stayed home with Alexis, which allowed Brian, Laura, Laura's mom, and the boys to get to church. Since church is crowded and one of the most germ-filled places, we have not been to church since Alexis was diagnosed. So, it was nice to get to go on Christmas Eve and get back there for at least one service, and such an important one.

We then came home and surprised Conner with Happy Joe's taco pizza that Papa and Mimi brought down today. He was so excited. Then, the kids picked out their cookies to leave for Santa. We put some carrots on the plate for the reindeer. Gavin got to carry a carrot into the room, since that was the only thing we trusted him to carry through the house, and he proceeded to dump it in the glass of milk. For about the tenth time this season, Conner almost lost it with his behavior and ability to ruin Christmas events! We calmed Conner down and explained that maybe the reindeer would like the carrots in the milk and that we would get another glass of milk for Santa. So, cookies, carrots and two glasses of milk this year!

We ended the night reading Grumpy Santa Clause, which has become the kids most favorite book and Twas the Night Before Christmas. Then, we tucked them in. Grandma Phyllis snuck up to tell the kids (which resulted in Conner as in the two minutes between when we came down and she went up, the other two already had sugar plums dancing in their heads) a bedtime story. Conner loves those almost as much as I did as a kid! Perfect ending to a great night!

Back on Track

We are back on track with Alexis's chemo. She went in today and met necessary counts, so started the next round. She got two IV chemos and third in her spinal fluid. For the one chemo, they had to pre-hydrate her and then hydrate with iV fluids for four hours after. Needless to say, it was a long day. She was entertained with several art projects and math time with dad. 

We did get a surprise when our insurance denied the fourth chemo she started today at home. The mixture called for cherry syrup, which apparently is not covered by insurance. At first I just asked how much it was, as the sign for flavoring said $4. I figured easier to pay that than fight insurance. When they responded $450, I quickly got on the phone. They said I couldn't do anything that the doctors would have to do a pre-authorization. So, I made them hold on the phone while I ran up 9 floors and demanded to see Alexis's oncologist. Within a minute, she was out there and pulled me into a room (did I mention we love her oncologist?). She started talking to them (in her words, telling them how to do their job), and we amazingly weren't getting anywhere. I mean because if cheery flavoring, they were trying to deny my child life-saving treatment she needs. As I was about to go off on anyone I could, pharmacy called and they had found an alternate solution to compound the chemo and were able to get insurance to approve yay one. How ridiculous is that? A dying child needs life-saving medication, and you are going to deny because of cherry flavoring? We are just glad that we are at such a great hospital to think outside the box and care for their patients so much. 

So, we were able to get all four chemos started today. She did pretty well with  them. She was a little tired by the end of the day, but was such a trooper. She also had one of her favorite nurses and got to see her friend Emma who was there for treatment. 

At home, we had to make certain she got at least three ounces of water every hour and went pee every two hours. One of the chemos she got can sit in the bladder  and strip the lining, making it bleed. So, it is important to keep fluid moving through to flush it out. She did decent with this and we only had to employ bribery of cheese a couple times. 

Christmas should be okay they predict, but this round usually comes with puking, low levels requiring transfusion and possibly fever, which would mean hospitalization. So, we are preparing ourselves for a possible rough next few weeks, and will be pleasantly surprised if she reacts better. We will also be watching for seizures after the spinal chemo. 

Carslake Christmas

The Carslakes came to visit for a Christmas celebration, since we can't travel this year to family. They arrived and after a little play time, we opened presents. All the kids, except maybe Gavin, were really patient to wait their turn. He did pretty well for his age, though. 

After presents, we quickly got ready for the stretch Hummer limo that Grandma Phyllis got us to ride around together and look at Christmas lights (and give us a much needed break from the house). We had been talking about this for a while, and Conner came to me a couple days ago and said, "Mom, when do we get our new car?" It took me a second to figure out what he was talking about, and when I did, I replied, "We aren't getting a new car. We are just having it for a couple hours." He thought, and then replied, "So, you stole the car." I said, "No, I didn't steal it." He said, "Well, you said we weren't getting a new car and if you didn't pay for it then that's stealing." Enter a discussion on rental agreements. At least he's been listening to me in stores!

The kids were so excited waiting for the limo. They stood by the window for what seemed like hours trying to see it come down the road. Finally, it appeared and you could barely get a picture before they were jumping in. 

The excitement didn't wear off for the entire three hours. The novelty of walking around a car and climbing on seats and turning on and off strobe lights and disco balls and being all together was exhilarating for them. They were doing back bends off seats and Gavin even tried to crawl out the window at one point. I think the driver thought our crew was worse than any bachelor or bachelorette party. The kids probably didn't even need the Christmas lights, but they did enjoy seeing them and looking out the window. Such a treat, and the joy on the kid's faces was absolutely priceless.