End of Consolidation

Last Friday (7/15) Elliot woke up with a fever of 100.9 so he was admitted to the hospital again. He got the normal workup—IV antibiotics, blood culture, and IV fluids. His hemoglobin was low (6.6) so he received a blood transfusion. He felt miserable on Friday but started feeling better on Saturday. Sunday he had an AGC of zero (normal would be over 2000, special precautions are taken when it gets under 500) and because it was so low the doctor wanted him to get 72 hours of the antibiotic. We were not discharged until Monday. His AGC was only 48 on Monday, so we were told that it wasn’t likely to begin the next phase on Thursday (7/21).

Thursday was a quick appointment at the office. He had labs drawn and they told us that his counts were not high enough to start the next phase. His AGC was up to 500, but it needed to be at 750. His platelets were 63,000, but they needed to be above 75,000. Everything was trending in the right direction, so he just needed more time to recuperate. They gave him a birthday box and we went home. We were actually happy with this because that meant we got to have Elliot’s 2nd birthday at home! We threw together a little family party and celebrated Thursday night. He liked trying to blow out his candles and looking at his cake, but he would not eat any of it. We are so grateful that God has blessed us with Elliot!

The plan is to start the next phase (Interim Maintenance One which lasts 64 days) tomorrow 7/26—assuming his counts are high enough. This phase starts with him getting put to sleep for a lumbar puncture and chemo in the office. Then he will be admitted to the hospital for another type of chemo, high dose Methotrexate. This type of chemo requires lengthy IV fluids before and after administration, and the drug takes 24 hours to infuse. This means a minimum of a 3 night hospitalization. He will get this type of chemo 4 times over the next 8 weeks, which will mean a lot of hospital stays. I think the term “Maintenance” is a little misleading in this phase considering all the hospital stays! At any rate, we are hoping his counts will level out somewhat during this phase enabling Elliot to get out a little more.

This new chemo that he will be getting is known for causing some pretty nasty mouth sores. Elliot is already not eating well (we are assuming because nothing tastes good to him anymore), so please pray that he does not get any of these! He has lost four pounds. He is not wasting away by any means, but is obviously thinner. He seems to latch onto a certain food and eat only that for a few days. This week it is peanut butter and jelly sandwiches – for breakfast, lunch and dinner.

And to end on a positive note, Elliot was in such a great mood all weekend! It was so refreshing to have our happy son back for a few days.