Day 51 of 57 during Delayed Intensification One

Last Wednesday Elliot got a transfusion of blood and platelets and then was discharged home that evening. Then he wasn't feeling well on Monday and spiked a fever again on Monday evening. Since he has very few white blood cells (his WBC level was 600 on Monday night), his body has no way of fighting bacterial infections. Melissa took him to the hospital around dinner time Monday, and they drew labs and started him on IV antibiotics right away just in case the fever was caused from bacteria. His platelets were very low, so he received a platelet transfusion that night. This morning the doctor told us that his blood culture came back postive for bacteria. The doctor thinks it is possibly a contaminant, but he needs to be treated fully in case it isn't. Thankfully he has been on IV antibiotics since Monday night and seems to be doing well (although as of last night, he was still running a low fever), but he will need to be on them for a full 10 days. Tomorrow they should know the specific organism from the culture which could affect his antibiotic regimen. They are trying to set up home health for us to be able to give the IV antibiotics at home. If he stays fever free we could/might get to go home tomorrow. He seems to be feeling well today, but his WBC level dropped to only 400 this morning. Please pray for God's protection for our little man especially during this time when his counts are "precariously low"!

Day 43 of 57 during Delayed Intensification One

So sorry for the long delay in blog posting. The last few weeks have been very busy with clinic visits, steroids (and a steroid stricken toddler), and chemo. This phase has really hit his blood counts hard resulting in us being house-bound most of the time. We are very thankful for family and friends who take Addie out!

The first few weeks of this phase included two 7 day rounds of steroids. This is the first time we have had them since the first phase (Induction), and thankfully he didn’t have to have them as long as last time (although the dose was a lot higher). The steroids made him very hungry, grumpy, and unable to sleep well – just plain miserable. We were all very glad to be done with these for a few months!

We had one quick planned hospitalization (one night) on day 29 for chemo. He was admitted because of the need to hydrate him adequately before giving it. This went well, and he was discharged the next morning.

We’ve also done two rounds of the chemo drug Ara-C. Many of the doses we had to give at home by shot (on the days we were not in the office where he could get it IV). This drug drops all of his counts (white blood cells and red blood cells). Friday we gave the last dose at home and then had a clinic visit to check his labs. His hemoglobin (Hgb) was 7.3 (it was 13.4 the week before) and his platelets were 17,000 (they were over 300,000 the week before), so he received transfusions for both. This was done in the hospital because they couldn’t finish them before the office closed. His white blood cell count was 200 and his AGC was zero.

Elliot was admitted to the hospital on Sunday with a 101 temperature under his arm and is still there. He was started up on IV antibiotics and they drew blood cultures. Thankfully his cultures have been negative so far. His IgG level was low, so they gave him IVIG yesterday. Last time he got this he had a reaction and they stopped it before it finished. This time they pre-medicated him with Tylenol, Solumedrol (steroid), and Benedryl, and he tolerated it fine without any complications.

We are expecting for him to need more blood transfusions tomorrow. We are hoping to be discharged from the hospital on Thursday. His counts will still be low for the next several weeks, so he will have to be readmitted if he gets any fever. He usually likes the hospital, but he is getting a little sick of it this time around.

Thank you for your continued prayers!