Ezra's counts have continued to drop, so the team here decided it was time to try another course of action. The first step is to put Ezra on a mega-dose of steroids for three days. He is now on a dose of steroids that is ten times higher than the high dose he was initially put on. This started last night. The hope is that we will see improving counts by Day 3 of the mega high dose of steroids.
If there is no improvement, then the doctors are proposing the use of a drug that has never been used before for this specific situation. They are trying to "think outside the box" to avoid using the drug that kills off B cells. This drug has been used for similar situations, but not for exactly what Ezra is experiencing. The drug alters the function of the immune system, but the effects do not appear to be permanent. The drug will make Ezra more immune compromised while he is on it and more susceptible to serious infection. We will be in uncharted territory if he needs this drug. We are weighing the option while hoping that we do not get to that point.
We are obviously not leaving the hospital anytime soon. Ezra's 5th birthday will be celebrated tomorrow in the hospital. We had been planning an adults-only birthday party for him and he had requested a Mad Science show at the party. We plan on re-scheduling for whenever he is home and stable. He doesn't know yet. Hopefully, we can make his birthday special enough that he won't be too disappointed.
If there is no improvement, then the doctors are proposing the use of a drug that has never been used before for this specific situation. They are trying to "think outside the box" to avoid using the drug that kills off B cells. This drug has been used for similar situations, but not for exactly what Ezra is experiencing. The drug alters the function of the immune system, but the effects do not appear to be permanent. The drug will make Ezra more immune compromised while he is on it and more susceptible to serious infection. We will be in uncharted territory if he needs this drug. We are weighing the option while hoping that we do not get to that point.
We are obviously not leaving the hospital anytime soon. Ezra's 5th birthday will be celebrated tomorrow in the hospital. We had been planning an adults-only birthday party for him and he had requested a Mad Science show at the party. We plan on re-scheduling for whenever he is home and stable. He doesn't know yet. Hopefully, we can make his birthday special enough that he won't be too disappointed.
We had been so looking forward to Ezra's 5th birthday as a birthday that would finally mark the beginning of a lifetime of good health. Each of Ezra's birthdays has been clouded by the uncertainty of illness. The past two birthdays we spent knowing transplant was ahead of us. Now, once again, we celebrate his birthday under a cloud of fear and uncertainty.
Thank you all for the prayers and well wishes. We appreciate them all.
