Peter Update – Friday May 25th, 2012

Peter had his Oncology appointment….all went well! His ANC (absolute neutrophil count) was up to 1200, his platelets were great, and his red blood cell count was perfect. For all intensive purposes, Peter is right back where he should be…..but it took being off chemo to get there. He has started back up at 50% of his normal dosage. On Monday he will get 50% dosage of Methotrexate. We know that does him in, especially when he is still recovering from the Vincristine infusion. Next Friday Peter will go in for labs to make sure he is holding steady. Then the following week would be due Vincristine and Methotrexate….the perfect storm in Peter’s little body. Makes my tummy churn just typing it!

The team did access Peter’s port and took a lot more blood than normal. The Health Department called and said that what they found in Peter’s blood was actually the Type F (not type B) Haemophilus Influenza bacteria. They were worried about G being ok – she is doing great! The Augmentin that Peter is on should take care of anything. I still think it was contaminated blood – but heck, at this point we just aren’t taking any risks! Some of the extra blood taken was to determine if Peter “zero converted” when he got his vaccine. In addition, prior to being discharged, Peter had labs done to determine the levels of his immuno-globulin (I know I mutilated that!)…..and the good news is that it came back in a normal healthy range meaning he wasn’t any further suppressed than he should be at this point in treatment.

So where do we go from here? That is still in the works. Which yes, is frustrating for me! The fact is, as much as I would like there to be clear answers, there never are….so with a deep breathe I accept that. The immediate plan is chemo at 50% and watching him very closely. There were several options on the table – altering the amount of chemo he gets – decreasing some, possible increasing others, to find the “cocktail” that keeps the cancer away but doesn’t risk Peter’s life in the mean time. Another option is re-introducing a recovery agent – Leucovorin is what we have used in the past. The risk is that over using it can increase the chance of relapsing – so it would need to be just the right amount. As a result of the immunity levels being acceptable for Peter, putting him on monthly IVGG is off the table. So it is going to take a lot of watching Peter closely (labs) and tweaking things until we find what is right for Peter. His nurse and doctor will be at the Leukemia monthly conference on June 6th and should be discussing Peter’s case there too.

More prayers, more patience, more cherishing the moments we have together. Peter is having fun again – he is playful and enjoying the outside. What is amazing is that since bouncing back from this episode. he is sleeping well and has a great appetite…..and that doesn’t happen often! He actually ate one and a half baggies of Goldfish crackers……that is unheard of for him! Last night we had strawberries and whip cream for dessert….he wasn’t ready to try the strawberries but he ate a lot of whip cream!

Peter running in the land of dragons….at the stone yard picking out items for our back yard project.


So much more to still tell of Peter’s journey! We were all in agreement that Peter is unique, with all his medical challenges he is more sensitive to chemo than most kids with Down syndrome – so in this case Peter, yes! IT IS ALL ABOUT YOU! Praying for wisdom of all caring for Peter – that together we can find the right treatment plan for him, so Peter can continue to run forward in life with a smile on his face and arms spread wide to keep filling this world with hugs.


We love you Peter!!




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