This weekend was just strange. Strange because Daniel wasn’t here. He went to a class trip away with his grade to a camp just outside of Denver. He went on the condition that he must use his best judgement of the conditions there and if he felt it was okay to stay there the whole time. He had the option of returning home early at any time because there were other parents coming and going at various times retrieving kids for various reasons. He was told to stay in contact with me frequently and to let me know how he was doing and so that I could remind him to take his medication and keep up with flushing his lines which he would still have to do on his own daily. I did what I could to pack up all his stuff and everything he could possibly need in case of an emergency. Of course the phone calls and texts never came so my anxiety was high all weekend. Of course he blamed it on poor reception. Of course he did. The only time I heard from him was to say he needed oxycodone for pain which freaked me out. He was in pain from the other night of overdoing it at a trampoline park he went to. Well that was totally something I was NOT prepared for. He hasn’t taken oxy in months and I certainly wasn’t going to send that out to a weekend trip just in case. I suggested he find some ice and plastic bag and a Tylenol if it got bad and that he could come home with the next parent coming this way. I didn’t hear from him for two more days so I guess things got better. Believe me it took EVERYTHING in me to not camp out near where he was and see how he was doing but I think I did a fine job and just let him be. He came home and seemed to be just fine. I think he took most of his medicine and flushed his lines most of the time. I am glad that he took his own water because he reported the supply there was both poor quality and lacking and at least he was prepared so at least he had that going for him. Normally I would have been upset that he didn’t share his stash but this time I was glad he took care of himself. I am glad he stuck it out and didn’t come home. It was his chance to be part of his class trip and I think he will be glad he went with them. Meanwhile I got a chance to have time to myself . And today I had a wonderful day with one of my best friends Karen. Something I don’t do enough. We laughed and cried and I remembered what it was like to just have a girlfriend and spend time together again. I missed those days. It was nice to not have to worry and rush back to an appointment or needing to get back to do anything for the boys. Thank you Karen for a wonderful (but emotional) afternoon. BUT alas the weekend is over and we are ready to head into another typical busy week of ….well typical busy week. But again all good.
I am excited to report we are now scheduling all one year post transplant appointments for Daniel. All the appointments that were done prior to the bone marrow transplant November 12th like Neuro-Psych, heart, lungs, mri, xrays, uerology, radiology, hmmm what other organs am I forgetting. Everything he had poked and proded before will be checked again to see see what has changed. We will of course hope that everything is fine and expect that some things will have changed as expected, many have seen no change and thank G-d some have changed for the better. I know most of all we are in a great place overall but will still hold our breath on some results. The big ones will be the bone marrow aspirate of course and the MRI and a new test that will be a full body scan that they haven’t done before that will look for anything new. Again of course you want to know everything but then you ask yourself DO YOU? It is like asking do you want to know your future? Well you look at things different after the past 16 months we have had. I look at today, not tomorrow.
I am excited to report we are now scheduling all one year post transplant appointments for Daniel. All the appointments that were done prior to the bone marrow transplant November 12th like Neuro-Psych, heart, lungs, mri, xrays, uerology, radiology, hmmm what other organs am I forgetting. Everything he had poked and proded before will be checked again to see see what has changed. We will of course hope that everything is fine and expect that some things will have changed as expected, many have seen no change and thank G-d some have changed for the better. I know most of all we are in a great place overall but will still hold our breath on some results. The big ones will be the bone marrow aspirate of course and the MRI and a new test that will be a full body scan that they haven’t done before that will look for anything new. Again of course you want to know everything but then you ask yourself DO YOU? It is like asking do you want to know your future? Well you look at things different after the past 16 months we have had. I look at today, not tomorrow.