A lot has happened in the last few days! A lot of good things, actually mostly good things… but also a couple things that gave us a major reality check and reminded us once again that we have no control over this life.
So, we’ll start with the good. Aunt Taylor spent the WHOLE weekend with us and we had the best time!!! The weekend was full of surprises, games, the movies, reading books, and dance parties (so many dance parties!) The boys love their Aunt Taylor and we had so much fun. I didn’t want her to leave and neither did the kids, but I think a future visit is in the works!
The fun kind of ended today when we had to take Caleb in for a blood draw and clinic appointment starting at 7AM!!!! I had to drop James and Caleb off at St. Jude and then leave to take Tyler to school, since his drop off doesn’t even start until 7:30. Once I got back to St. Jude, James and Caleb had already been called into his Clinic appointment early. That never happens! But our doctor got his blood results back and his Hgb was very low. They transfuse for anything under 8.0, and worry about anything under 6.0, and Caleb’s Hgb was only 5.6!!! They put a rush order on blood and we headed to the Medicine Room to start platelet and blood transfusions.
They did the platelets first and everything was fine. Next they started the blood. They always tell us that he could develop an allergic reaction, but this is easily his 5th or 6th blood transfusion and he’s never had any reactions to them. Everything was going fine and we were about half way done with the bag when Caleb started coughing a little. I thought this was a little weird but I asked him if he was ok and he said yes so I didn’t think much of it. Then he asked to get up and use the bathroom and that’s when I saw a red bump on his cheek and his eye looked a little funny. I was going to call the nurse in after he went to the bathroom, and when he pulled his pants down his legs were covered in a rash or hives of some sort.
So we immediately called the nurse in. She stopped the blood. They gave him Benadryl and Zantac. The redness went away pretty quickly. I was relieved! James and I just felt so bad because we could tell Caleb felt like crap and the meds knocked him out pretty quickly!
They told us it would take almost 2 hours to send off a blood test to see what caused his reaction, and then we’d have to start the transfusion all over again with a different bag of blood. So I thought, well there goes our chances of getting out of here early today but at least they aren’t admitting us. WRONG, because then he developed a fever. That’s an automatic ticket to a 48 hour inpatient stay while they run blood cultures and test for infections. James and I were SO BUMMED! We are very pleased with how cautious and thorough St. Jude is. They take no chances, especially when it comes to infections and his central line (port). Those issues can become very serious very quickly. So we are very thankful for the wonderful care Caleb receives. But it still didn’t stop us from being upset. Inpatient stays are mentally and emotionally draining, and watching Caleb not feel well, get upset, and then fall asleep from all the meds was just heart breaking. We are just trying to do what we can to help him get stronger and recover and then this happens. It’s definitely hard knowing you can’t really make plans each week, because we are always at the mercy of the blood tests, transfusions, chemo treatments, etc and none of it is ever set in stone. But I am happy to report that once Caleb slept off the Benadryl he was up and eating and playing again. He had a successful transfusion this evening with a different bag of blood and no allergic reactions! His Hgb and platelet counts should be on their way up now!
There is also something that’s been weighing heavy on our hearts the last couple days. Without going into too much detail, there is a family here that we met back in the Fall with a story very similar to ours. Their son has a different type of brain cancer but their timeline and treatment plan has been very similar to ours. They went through radiation at the same time, and went home for their break around the same time. Their little boy who has cancer is about Caleb’s age, and he has an older brother about Tyler’s age. We ran into them last week in the halls of St. Jude and had our usual “oh hey, how are you? How are things going?” conversation. Only this time was very different. They found out back in December that 1 new tumor had started growing, and then found out the previous day that 3 more tumors appeared on their scans. James and I were shocked. We didn’t know what to say. What do you say to someone in that moment? I have never been faced with anything like that before, and they were about to go into a meeting to find our what, if any, options were left for them and their son. I have to admit James and I kind of froze. We told them we’d be praying for them and all of that. They had to get to their appointment and we had to get to our next appointment. But as we were sitting in our next appointment I told James I was so mad that we didn’t give them our phone numbers. What if they leave St. Jude to go home and we never see them again? So James gave me the courage to walk back to the clinic we knew they were waiting in and I walked up and gave them our phone numbers. I told them if they ever need anything, even just to scream about how unfair life is, to give us a call. A good conversation followed and I left feeling so much better. I was feeling like I could handle another moment like that if given one, and I also know that I would like someone to do that for me if the shoe was on the other foot. I am praying so hard for this family as they decide what is best for their son. I don’t know the details about the meeting that followed, or the exact options they are weighing, and it doesn’t matter. The thing that everyone has in common at St. Jude is that life has already smacked us in the face once. No one would be there if they hadn’t already received some bad news about their child. And yet some families get knocked down over and over again. I feel like we never know what’s around the corner, but you learn to take the good with the bad and make the best out of a hard situation. It was just another reminder to value every second with your loved ones.
So, with Caleb now inpatient we will wait to see when he will be discharged. We are hoping the cultures will be negative and they will have no concerns with letting us go home, but I have a feeling that won’t be until Thursday. But, you never know! I’ll definitely update everyone when we are able to get back home! For now I go to bed thankful for him, how strong he is, all the laughs he gave me today, and the wonderful care St. Jude is giving him.
Life is full of missed opportunities, those “woulda, coulda, shoulda” times that pass by but haunt us over the years ahead. Being an angel is a tough assignment. Finding the family and being with them was your angel assignment today. God bless you for that. God bless Caleb and all of you during this time and in the years ahead.
Just sending a big hug through this magic machine! By the way, nobody would have known what to say… I’m proud, but not surprised, that you went back and found them in the waiting room. I hope Caleb never has another transfusion reaction. They are rare. May God hold you all in his loving embrace today. Is your mom there yet?
Prayers that Caleb’s counts continue to climb higher & higher & he is feeling better & stronger each minute of each day. So sad to hear about the family with the little boy who also is sick -prayers for their family as well that there is a miracle that will cure this child from this disease!
Have courage. Keep your faith. Many prayers are offered for you each day.
Bill – KK4LYQ