As always we have been busy the last few days. Tyler started summer camp, Grandpa and Grebbie came into town, and in general we are just waiting for Caleb’s counts to come up so we can do his last round of inpatient chemo.
Last weekend started off with Tyler’s T-ball celebration at the park. Sadly Caleb’s counts are low and the heat is too much for him to be outside long, so he wasn’t able to go. But I took Tyler and he had a blast playing with his friends at a nearby park. It was a park we drive by all the time but didn’t even know about. It’s funny that now that we have lived in Memphis for 9 months or so I just finally feel comfortable here, and we’ve been finding some cool places to go other than the usual tourist attractions. I never knew adjusting to a new city would take so long but it did here for some reason, probably because I was scared and not open to exploring a lot of places when we first got here. But hey, now that we are almost ready to move back to Florida Memphis is finally starting to feel a little like home ha ha!! But I guess that’s a good thing because we will be back here every 12 weeks for checkups starting when we go home, so we’ll still be spending plenty of time here in the coming years.
Sunday Grandpa and Grebbie came into town, but while we were waiting for them to arrive we had a scare with Caleb’s port. I took off his pajama shirt to get him dressed and saw some blood under his bandage that goes over his port. I tried to stay calm and call James over but I was very scared. Infection is the number one concern with his port and it was hard to tell exactly what happened. All I knew was Caleb was still acting fine and running around the house dancing and singing so I knew he wasn’t in pain. We calmly told him that we needed to take him to the hospital to get it checked out. They suspect that he maybe slept on it wrong and the needle moved a little to the side and opened up the hole and it started bleeding a little. But luckily they were still able to flush and draw blood from the port so there was nothing wrong with it. Caleb just must have bumped it or slept on it wrong. We were very relieved about that but concerned about his counts since he bled so easily and was also bruising very easily. They ran a CBC (complete blood count) and his Hgb (hemoglobin) was low so he had to stay for a blood transfusion. So what we thought would just be a normal Sunday with no appointments turned into a long day. He headed to St. Jude around 11am and didn’t get home until 8pm.
But in the mean time I played games at home with Tyler until Grandpa and Grebbie arrived. Then we put Grandpa straight to work his first night in town to make Caleb’s favorite dinner “grandpa noodles”. I brought him some in the hospital since he wasn’t home for dinner and he ate 3 full helpings! It definitely cheered him up after a long day!
The reason Grandpa and Grebbie came into town in the first place was to give James and I the opportunity to go to Nashville for a special concert called “Darius and Friends”. It is put on by Darius Rucker and all of the proceeds go to St. Jude. This is his 10th year putting on this concert and he has raised over $2 million for St. Jude to date. He told the story of why he got involved with St. Jude… over 10 years ago he was in Memphis on a tour stop and he decided to take a tour of St. Jude. He was so touched by what he saw that when he left he called his rep and said “I want to do something for the kids at St. Jude”…. and so the “Darius and Friends” concert idea was born. He has had many country stars on the stage with him over the years, but this year was Luke Bryan, Sheryl Crow, Kane Brown, Brett Young, Travis Denning, and Jimmie Allen. It was an amazing show but what was the most amazing was that people will give up their time and share their talent to raise money for St. Jude. There was a silent auction as well as a live auction and people were so generous. I don’t know if the people that bid (way above the value of the items they are getting) have any idea the impact they make on a daily basis but they truly do. Maybe they have a tie to St. Jude and maybe they are just good people, but either way we are so thankful. We never thought we would need a place like St. Jude, of course who would ever think they would have to come here?! But I can’t imagine what this world or our lives would be like if it wasn’t here! So, the concert in Nashville was a very special night and we are so grateful we got to attend!
While we were away, the boys had a blast with Grandpa and Grebbie! Tyler started summer camp so he is spending most of his day at school. There is a different theme each week and this week is “performing arts week”. Just in two days he has already come home with a home made harmonica, finger puppets, and tons of artwork. And of course Caleb wasn’t spoiled at home at all!! (ya right!). But it is important that he gets his rest during the day and he was definitely comfy and well fed.
The last bit of news I have to share is that we did not go inpatient today. I am a little disappointed, but not feeling too discouraged because Caleb has still been feeling really well and his numbers aren’t far off. We are going to check counts again on Friday and hopefully go inpatient then. This will be to receive his last round of the high dose chemo. Even though he will be on an oral maintenance chemo when we go home, this will hopefully be the last time he ever has to get the really nasty stuff in the hospital! I am excited about that because 1, it makes him feel terrible and 2, hospital stays and being stuck in that small room just plain stink! This will hopefully be the very last time!!! That is all for now. Just going to keep Caleb resting and recovering until Friday!