More Medical Questions

Alexis had a couple doctor appointments today that happened to fall on the same day. Her first was with her ENT to look at her ears. We are happy to report that there is no sign of any change. So, we will stay status quo and check back in a few months to make certain they are the same. He said then we would start to talk about surgery and when in the next couple years we should do that.

The ENT also asked about her voice and if she has soft palette abnormality. We said that her soft palette had been paralyzed during chemo  and that was why she was having resonance issues (the flow of air through your system…..an s sound should push air out of your mouth and not your nose, which Alexis has a hard time doing). He sounds have actually dramatically improved since the end of chemo, so we have been very excited about this and hope it continues. The doctor thought we should have his partner that specializes in that are look at her, though. So, we ended up adding another doc visit while he assessed her mouth. He wants to take a look at her soft palette with a camera. So, we are now going to be looking at that in Feb. They will take a camera, feed it down her nose and watch her talk, so they can get an assessment on how her mouth and related parts move when she talks. They said if it is abnormal and needs to be corrected, we can do that with surgery.

I left this appointment frustrated and disappointed that we were adding surgeries instead of moving in the direction that I thought. I called her speech pathologist right away to let her know and to have her call the doctor to share her information. She said that she has always known that Alexis’s ENT area was a little off, but before the chemo, nothing had impacted her resonance except the ears. However, with the chemo we know that it has paralyzed that portion (probably because it was weak in its structure to start with), so it is hard to tell if she will fully get that back or not. She made me feel a lot better, as we always knew from the chemo that this is something that might require surgery.

When I got off the phone, Alexis asked why I was so upset, as I was crying and had been for a while at that point. So, I explained what was going on. I explained how she might have to have another surgery, and that was what was making mom sad, as I don’t like her having to have those.  Then she got sad. So, we talked about how we didn’t know yet if that would happen. We also talked about that although surgery is hard to go through, it always makes you feel better after and for longer. We talked about her recent hip surgery and how that hurt really bad to go through, but that now she feels so much better and do so many more things. It was so hard to talk to her about it, as I wanted to scream, “I’m pissed off too and life just isn’t fair to you,” but since I had failed to be a emotional cheerleader, I knew I needed to put on my mom boots and walk with her through understanding the positives.

The last doctor appointment was with her pulmonologist. He said she was doing great and that we didn’t need to see him for a year…that’s a doctor visit I can get on board with!

So, we will wait and see what the next two months bring and then assess in February what we thing the next steps should be. We are lucky to have such an amazing speech pathologist on board that has been with Alexis since she was 3. She knows here before talking, during talking, before cancer, during cancer, and she has always talked us through all the implications. We are so blessed to have her by our side walking this journey.

Best Possible Surgery

Alexis had her check up today. All looks great, so much so that they want to take out her port. Brian and I at first were a little hesitant…they had always talked about 6 months and that’s the greatest chance of relapse, and we didn’t want to jinx anything. However, they talked about the risk of having a port with the blood line infections and how serious that can be. They also said that if she gets a temp, we wouldn’t need to rush to the hospital, but could manage it like any other kid, which is probably good given we are headed into flu season. So, we went ahead and scheduled the surgery for Dec. 12^th …and Brian and I are mentally preparing ourselves for the jinx aspect, and instead focusing on that they think she is doing that well!

Sibling Love

This year we are not only thankful that we no longer can say we have a kid with cancer, but we are so thankful for the bond that we have gotten going through all of this. Maybe we would have been there anyway, but the bond the kids have is amazing. Yes, the fight, all the time, but they also have very big moments where they show how much they care for one another. A fellow mom sent Laura this picture of Alexis and Conner walking into school today…apparently all the way to Conner’s classroom. This just melts my heart (and which it could always be this way instead of the usual sibling fighting.

Turkey Feast

Conner had another celebration party at school today…this one was a Thanksgiving Feast. They made Turkeys, had a couple games, and then they ate a feast of turkey food. What a cute party, and Conner was so happy to have mom there.

When the kids got home, mom played a Christmas trick on them. We have always had the lights plugged into a clicker that you use to turn the lights on and off. This year, we couldn’t find the clicker, so instead, we bought a remote control for the lights. The kids didn’t know this, and mom decided to have a little fun…

Lighting St. Louis's Christmas Tree

Alexis was asked along with another little boy who was part of Make-A-Wish to come help light the tree with the St. Louis mayor. So, we headed downtown for the ceremony. When we arrived, we were taken upstairs where they had Hors’ Devours set up. Conner was fascinated with the fancy treats. Alexis just zeroed in on the meat and cheese! After a while, we were invited to the stage where Alexis was introduced. The people at Union Station gifted her a ride on the Santa Express. We then went to wait a little more until we would light the tree. The mayor came up, and we were able to chat with him a little bit.

Luckily, I had two friends who had come into town for the weekend. So, during all this waiting, Gavin was with them doing activities downstairs. He had a blast and thought he was hot stuff, since he got all the attention! We were so glad we weren’t stuck with him, as he would have destroyed that place with nothing to do in the upstairs waiting area!

Alexis was lucky, as she also had a friend that came down to see her. Her one little friend has supported her throughout some of the events she has gotten to do. So awesome to have that support from people!

After a while, we headed to the other end of the venue to light the tree. Alexis was up on stage with the mayor, the other boy Caleb, and a local celebrity newscaster. On the count of three from the city, they hit a plunger and lit not only the Christmas tree, but all the downtown lights and it set off a round of fireworks. Alexis was so proud of herself, and it was amazing! Such a fun even to be a part of!

Gavin Play dates

Gavin and I are starting to arrange some playdates in the afternoon now that the weather is cold. One day we brought a little friend from his class to Chuck E Cheese with us, and this week, we went with friends to the Magic House.  He is loving making his own friends, and it is so fun to see how nice he is to them. His personality is really starting to come out, and so far he seems to have great taste in friends!

3 Million

We headed downtown to Ballpark Village to attend the “reveal” for Pedal the Cause. Each year they have a big even to reveal how much money was raised. This year the grand total was $3.3 million for a total of the five years it has been running of $15,807,029, which is incredible! The best part about these funds is that 100% of the funds go directly to cancer research. Such a great even to be a part of!

Muffins with Mom

Alexis and Conner had muffins with Mom for the first time at school. We got to go to school early and eat a muffin together. I think it should have been muffins with teachers, though, as the kids spent the whole time talking to different teachers that were walking around. At least it gave Laura an opportunity to talk to other moms!

Boy Time

The kids had an early out from school today, and Alexis went for a play date at a friend’s house. So, the boys went to the Magic House. We had a great time playing, learning about chess, climbing, painting turkeys and finally making our own fish. They have a really cool new display where you color your own fish and then scan it, and it puts it on the wall as part of the “aquarium.” They were so excited to see their drawing come to life. Great afternoon with the boys!

BFFs

One of Laura’s good friends flew in from Colorado to visit us. We had a great day playing baseball with the kids in the backyard and then going to see Conner’s friend play soccer. Carmela was such a hit that at the end of the day, Alexis turned to her and said, “You are my best friend.” That prompted Carmela to run out and buy them best friend necklaces. I think I lost my friend to a cuter version of me!

Sleepover Hunt

Conner got to have his first sleep over tonight. He has been begging ever since Alexis had one for her birthday. So, we let both of them have a friend for the night. They had a great time playing together. Then, we took all the kids out for a night hunt. We had hid little dinosaurs on or near the sidewalk. We gave them each a flashlight and let them loose. They had a great time, and it successfully tired them out for them to go to bed early!

Basketball and Blues

Conner is playing basketball this year for the first time. They don’t really play any games, but they more just practice and learn about the different components. We clearly have to introduce baseball terms, as she kept saying he made a goal and asking what the baseline was….we will get there!

We then continued the day with a night at the Blue’s game with the kids’ school. They each had a couple friends there, so we did a lot of switching around so the kids could sit next to each other. They had a blast, but dad was a little sour when we saw them participating in the Blue’s power play dance.

Thankful Parties

Both Alexis and Conner had a class party today at school. Luckily, they were at different times, so Laura was able to go to both. At Alexis’s she just helped run some games (pass the gourds and penny toss), but at Conner’s she was in charge, so she helped organize the turkey craft, the balloon race and the turkey toss. Both kids had a blast, and it was so fun to see them with their friends.

One more Celebration

We had one more celebration with Alexis being done with chemo. She got to celebrate with all the nurses in the Hemoc clinic. It came with a cake, present, and certificate. This is a celebration we can keep on celebrating!

Halloween

We spent Halloween in our neighborhood this year. We went first to a neighbor’s for a little food pre-trick or treating and then headed out with a couple neighbors to some different houses. The kids had so much fun that every time we said we should head back, they begged to do more. We went to every house in our neighborhood and were the last ones out. We didn’t get home until 9:30. We were also having so much fun that I failed to get any pictures. I will say that was a successful Halloween!