Ok, so now on to the reason why we are here. 🙂 We knew something was up when we got there at 9:30am and they told us they needed to talk to us before giving us the GMCSF shot. 3 and a half hours later, we were called back (fully convinced something was wrong). The team had decided that they wanted Eli to do high dose 3F8. High dose means they give the kids 10 times the normal dose of 3F8. As it turns out, the shortage of GMCSF is not the only issue they are facing. They are also facing a shortage of 3F8. The next refreshing shipment has been delayed until June, so they can’t have any kids starting the high dose 3F8 protocol until then. SO, instead of doing nothing, they decided to start Eli on a protocol that uses regular 3F8 with a beta-glucan (some sugar from a mushroom), which has been shown to be much more effective than 3F8 alone when there is evidence of disease still (like Eli has). The beta-glucan has to be started on the Wednesday before the Monday of the 3F8 along with the GMCSF. So why didn’t we go ahead and do that today? You got it. A shortage of glucan. They won’t be getting any in until Friday. My first question was, “And why couldn’t we be told this 2 days ago before we set out for NY?” The Dr. said they didn’t find out about the shortage of 3F8 and beta-glucan until yesterday’s team meeting.
So, we immediately started thinking of things to do until next Wednesday when we’ll start the beta-glucan and GMCSF and came up with two things. We need to meet with the radiation team and get Eli’s radiation planned figured out and we asked if we could ditch his temporary lines and put in a port. Tomorrow we meet with radiation and decide on a one or two week radiation plan (to follow immediately after 3F8) and next Tuesday we meet with Dr. Laquaglia to do a pre-surgical evaluation and then do Eli’s port installation next Wednesday (the same day we start beta-glucan and GMCSF). Have I lost anyone? Let me try to spell it out:
February 14th – Radiation Consult
February 19th – Surgery Consult
February 20th – Port installation, temporary line removal (swimming pools here we come!)
February 20th – Start GMCSF and beta-glucan drink (yes, it’s a sugary drink we have to get him to ingest)
February 21st through the 24th – Daily beta-glucan and GMCSF shots.
February 25th through the 29th – 3F8 treatments and beta-glucan
March 1st and 2nd – Daily beta-glucan
March 3rd through the 7th – 3F8 treatments and beta-glucan again
March 10th through the 14th – Radiation (twice a day for a week, possibly two)
The beta-glucan with 3F8 plan is 2 weeks on then 2 weeks off for 4 rounds. If everything goes according to plan (insert laughter here from all our fellow cancer families because I just said the word “plan”), we could be done with this protocol in time for the new 3F8 shipment and could go right into the high dose 3F8 protocol. Honestly, high dose 3F8 tends to make kids develop HAMA much quicker, so we’re a bit relieved to not be jumping right into that. Although, Dr. Kramer today said that Eli has an advantage of coming off of high dose chemo recently, so HAMA is a bit less likely.
There you have it! Our wild ride we call our lives! Thanks for riding it with us. On a light note, be watching the pictures I post carefully. You’ll notice something making a comeback. Eli’s head is pretty fuzzy right now and we hear that 3F8 somehow boosts hair growth, so you can say goodbye to Eli’s baldness that we have grown so accustomed to. 🙂 As always, the prayers are so appreciated. We’ll be asking for them on the 25th of February as 3F8 treatments are VERY painful and will not be any fun (several of our little friends at the house are going through them right now, so we’re getting a sneak preview.) More about that when the time comes. For now, we are so thankful for Eli feeling so good now and for a protocol to be getting under way next week!