We have been MIA on the blog for a few days because we have been overwhelmingly busy. So many things have happened in the past week… I visited Tampa, we moved apartments, and today Caleb had his 30th and FINAL radiation treatment!!!
For starters, I went home to Tampa last week for 2 reasons. First, we had a walk through of our NEW HOUSE! And second, I had family in town from Germany who I have never met and may not have the chance to see again, at least not any time soon.
We started last Wednesday morning by doing a walk through of our new house!! Seeing it in person was so exciting. We were supposed to walk around and identify any last minute items that need to be fixed before we close next Friday. But I mostly walked around daydreaming about the day we will fill it with furniture and make it our home. It’s hurts that we would be so close if it wasn’t for what happened with Caleb. But it’s ok because he comes first of course!
I am thankful that we called in reinforcements to help us look over the house. We had our realtor, our designer, and an inspector we hired. I’m so thankful for this team of people because we all noticed different things that need touch-ups or need to be replaced. There is a long list, but nothing major and we got to clearance to close from our bank so we are going to get the keys next Friday!!!
For now I’ll just tease you with a few pictures… mostly details. We’ll reveal the whole thing at some point when it’s all finished, but for now we’re having fun still keeping it a secret.
The rest of my time in Tampa was spent with my family who is visiting from Germany. Their trip was planned long before we found Caleb’s tumor, so I was bummed when I realized I wasn’t going to be able to meet them. But James suggested that I stay the week in Tampa and I’m so thankful he encouraged me to do that. I was able to watch my Oma see her brother for the first time in 30 years. This was very special. They just wanted to sit down and talk and catch up (in German of course).
My German family is all so sweet and we had a great time getting to know each other over lunch by the water at Hula Bay.
The next day we all went to Busch Gardens. Even my 91 year old Oma made it all day with us. I have not seen her so happy in a long time. She isn’t able to get out much anymore so she was very happy to be at Busch Gardens and it was even more special that she was able to be there with family.
We had a wonderful day! We got back to mom and Bruce’s house and had wine, cheese, crackers, and of course we ordered American Pizza for them ha ha! It was such a nice evening I didn’t want it to end. We sat around exchanging stories, looking at pictures, and laughing at memories.
The whole trip just reinforced for me how important family is. It was nice hearing a little bit about my Oma growing up and it all helps me understand where I come from. They also gave me so many kind words of support for everything I’m going through with Caleb. I hope to see my German family again some day, maybe even in Germany!! But until then, Ciao!
I was sad leaving Tampa but I couldn’t wait to get home to squeeze my little guys! I made it back to St. Jude on Friday in time to be with Caleb before his treatment. He had a really rough day so he wasn’t in the best mood. His day started at 7am with an Echo to check his heart, and then his radiation treatment wasn’t scheduled until 12:30. This means no eating that whole time. It wasn’t one of his best days, but I was glad I could be there because I missed him so much!
Saturday started with Tyler’s soccer game. And let me tell you it was COLD!! It was in the 40’s while they played. Good thing the sun was out or I would have watched from my van with the heat on. Just kidding (kind of!) But seriously, it was pretty chilly and we are still getting used to all this cold weather! Caleb played on the playground as usual.
The other thing that happened Saturday is we decided to move. Yes we MOVED again. I am so exhausted from moving and after we get settled in our new house in Florida next summer I hope I NEVER have to move again. So, long story short, when you have a break in treatment and you aren’t actively getting treatment or having appointments you have to check out of St. Jude housing. We knew about this and decided to get on a waiting list for an apartment close to where we were living so that we could remain close to Tyler’s school and St. Jude. A 2 bedroom 1 bath apartment came open in the building across the street so we jumped on it. If we did not do this we would have had to move all of our things out of our current apartment, put them in storage, move back into St. Jude’s temporary housing, and then get on a waiting list for one of their apartments again when we got back. This means at least 2 more moves when we return for Caleb to start Chemo and I just can’t take the stress any more. It’s hard trying to keep Tyler in a regular routine for school and also care for Caleb when we are constantly moving. Unfortunately the only reason things have to work that way is because St. Jude is short on housing. They are trying to remedy this and are starting another housing building in 2019. Maybe then things will be different and people will be able to stay in their housing through the duration of their treatment plan regardless of breaks. I really hope so, but for now, this is the way things work and we are thrilled with our new apartment. We spent most of the weekend trying to unpack and get it all set up. There is a huge grassy courtyard type area right out our front door where the boys can run around and play! They loved it!
On Monday we still weren’t quite where we wanted to be with unpacking, so Grandpa and Grebbie took care of Caleb’s appointments at St. Jude again. I’m so thankful for all of their help! Without them we would be walking in to a messy apartment when we get back to Memphis in December. Thanks to their help we have a nice cozy home to come back to when we come back to start Chemo. They didn’t have it easy while they were here either. Caleb had a lot of appointments starting very early in the morning several of the days. On Monday Grebbie had to be with him to get his port accessed, which is not Caleb’s favorite thing. But she said he did amazing and was so brave! I am so thankful they were here to spoil Caleb and take good care of him. By the end of the day Monday the apartment was really shaping up!
And finally this brings us to today, Tuesday, the LAST day of radiation treatments!
Although I am happy we are done with this phase, I was also sad to say goodbye to the amazing team of people who have been taking care of Caleb during his radiation. There are many people we looked forward to talking to every day and who really got to know Caleb, specifically Ms. Nikki. It didn’t matter if Caleb was in a good mood or a bad mood she could always tease him and get a smile out of him. She is just one of the MANY people who make St. Jude a special place. We promised to go back down to radiation and visit her even though he won’t be having radiation treatments anymore!
On the last day of radiation they give the kids balloons and they also get to take the mask home that they wore every day during treatments. When we got home we put it on Caleb and explained to him that he wore that mask every day while he was sleeping and he never even knew it. Of course Tyler wanted to try it on too!
Tyler’s school always keeps us very busy with events, field trips, projects, and now tonight an art show! Each child in the school created an art piece to be put on display and available for purchase. Tyler was so proud to show us his art, and of course we bought it!! He also showed us his “hungry caterpillar” art hanging in the main hallway. I love seeing the smile on his face when he’s proud of something and I am glad we could all be there tonight to support him and his wonderful school.
And we have come to the end of what is definitely my longest blog post yet. This is a bittersweet time because we are so happy to go home, but looming in the back of my mind is the fact that we still have our biggest battle ahead. Chemo will not be easy. We will be inpatient sometimes, and out patient other times. We don’t know how sick or weak Caleb will become. We don’t know what future MRI’s and CT scans will show. All I know right now is I am focussing on today and this moment, and in this moment I am thrilled to go home tomorrow!!! I am going to enjoy every moment we are able to be with family and friends and creating memories together. We have many fun activities planned with the kids including theme parks, visits with grandparents and other friends, seeing Santa, and hopefully a visit to their old school so they can see their friends. We are also going to be able to celebrate Thanksgiving at home which will be wonderful! We will be updating the blog a couple times while we are home to let everyone know what we are up to. I know that this break in treatments will fly by way too fast so we are ready to savor every second!