Help Cure Caleb- Caleb's Journey

This week I had a big wake up call in this journey. I was reminded how quickly things can once again change. Caleb had labs on Monday and a scheduled lumbar puncture. He didn't meet counts. This is the first time in his treatment he has had a hold due to counts. BUT it is ok for the kids to have holds as their bone marrows are recovering from the intense chemo that is knocking them down every week. The only difference was Caleb's doctor said he wanted to recheck again on Thursday since his ANC hasn't gone up as quick as he expected and if there is no movement he would want to do a bone marrow aspiration to check for any leukemia cells. As soon as he said that, I felt numb. He said a while ago that only reason to check would be if they suspected something, and most of the time everything is fine - but I just felt sick. Also before he left for the day he wanted to run a flow test - that determines all the cells and a machine figures out what phase the cells are in and if they

Sometimes you have to go through things, not around them. Caleb has had a good week this week. He hasn't had any treatment since last Thursday and he's been home since Monday evening. He went in for labs on Thursday AM and did amazing! His counts are recovering and they expect him to start his next round on Monday morning. He will be moving right a long into Interium Maintenance II. This is his last phase before Long Term Maintenance. A phase we both look forward to. As the way it stands right now, with no delays or holds it will be right around New Years. Looking forward to a better 2013. This year basically sucked for us. We look forward to it being over and behind us both, but we know the road is still long and hard ahead - just a little less intense. At clinic on Thursday he did amazing with port access. No tears, as he knew it was just for labs and the needle was going in and out and that's it ( as he says ). Even the nurses were amazed at how well he did an

It was a long, exhausting weekend for the two of us. I knew Caleb's counts were low so I checked his frequently as he can get a "neutropenic fever". That is basically when his body gets a fever because his White Blood Cells are very low. His were basically at 0, so I was on "fever watch" as he and I call it. He very rarely has a fever of 99. I think since dx, my thermometer has only read 99 twice - and we are lucky and grateful for that. Friday was a different story. At around 8:30 he felt warm to me and he read 99.8. I waited about ten minutes and retook it 100.0. At 100.4 we need to be enroute to the ER. So I had him sit down and relax, as the fever was not stopping him and if I didn't take his temp, I probably may not of known. The next read was 100.6 and I was on the phone with the on call oncologist as I threw a bag of belongings together for us. Once we got to the ER his temp stayed around 99.6. Fevers are indicators of a lot of things with Leukemic

Another week of treatment is complete. Yesterday Caleb received his last IV Chemo for the Delayed Intensification Phase. He had a CBC and his counts yet again have dropped. This was upsetting to both he and I because his counts are normally on the rise. It is normal for them to drop, especially to these levels, but we didn't expect it. He is yet again borderline for both a platelet and packed red blood cell transfusion. We will be returning to clinic again on Monday to recheck and see if either is needed. They do not like to give numerous transfusions because it puts too many different antibodies into his system from all the donors. So unless a transfusion is critical, it is a waiting game to see if they will begin to go up. I am hoping both counts will be on the rise, in addition to his white count which is basically non existent right now. So I am on fever watch, any sign of a fever he would have to go in for cultures and inpatient stay. And using hand sanitizer, washing and mask

Caleb had to go to clinic three times this week. I knew his platelets and counts were on the trend downward and needed counts checked. Monday they were way lower than the week prior so we decided to recheck again the following day. Yet again, he was at a very, very low level but not enough to transfuse. His were 27 and they do lower than 20. So, on his treatment day and recheck of his labs his platelets were critically low and he needed a platelet transfusion. Another long, draining day for the two of us in clinic, but he is such a trooper. This week Caleb happened to be in clinic during the time his buddies, Trevor and KK were. It was Trevor's end of radiation day and milestone party from Base Camp. It's always great getting these three together - they all get along so well and all are such warriors! And it's great for us Mom's to get together we all know exactly how the other is feeling and what they are going through.  We even had a playdate with the three of them

Another week of treatment behind us. This week has been a rough one mentally, emotionally and physically for Caleb and I. Clinic days drain us both. They completely drain me, Lord only knows what they do to him, really. Caleb and I went into clinic at 930 yesterday and he wasn't taken for his LP until 12:10 pm. By noon, he was cranky and starving. And I didn't blame him since  he hadn't eaten or drank since 7pm the night prior. That was the longest he had to go without eating for sedation. He's been having pains in his legs and the doctor feels again it's from one of the chemos that has that effect. So I'm just treating him as needed with pain medication or morphine at home. Hoping it doesn't get as bad as it was two weeks prior. He's getting as used to it as he can not having hair. At times I think he forgets. He still has strand on top of his head, but mostly gone. It's still falling out. I remind him everyday how handsome he is and how amazing h

It's been another long week. Clinic day last week was long and exhausting. The things this little boy has to go through is horrible. He should be worrying about what toy or game to play - not that he may get petichiae (yes, my four year old knows what that is and can say it correctly) or what his counts are or what day he needs to go to clinic to get meds that make him feel like crap. Thursday was his clinic day this week and boy was it a long one - but Caleb had Mama, Grandma and PopPop by his side the whole day! We knew it was going to be long, but every one forgets how long it actually is. He had to not eat, since he was getting sedation. As hard as that used to be, that is one of the easier things now. He had a spinal tap and I swear it was the longest spinal he's had to date. He had chemo placed in his spine and had two IV infusions of chemo. He had to be in clinic all day (8-5) due to hydration with this chemo. It CAN NOT sit in his bladder and must be passed. The reason