Rituximab Therapy

Day 22 in the hospital.
Day 18 on high dose steroids.

Rowan's reticulocyte count went up today, so our hematology team decided it was time to start the rituximab. This will be our third attempt in treatment to fix Ro's autoimmune hemolytic anemia issue. (1.steroids{ongoing} 2. IVIG)

In a brief nutshell, you have B Cells which remember what made you sick and prevent you from getting sick in the future. by remembering the illness and how to fight it. The rituximab will kill all of Rowan's B Cells- good and bad.
By erasing all of these B Cells, they are hoping that the faulty ones, causing the attack on Rowan's red blood cells, will stop wrecking havoc.

Today has been such a good day for her: smiling, reading books and acting more like my RoBaby...











It's hard to believe there is such a war going on inside her precious little body.

The unfortunate thing is that the rituximab treatment will not show any results quickly. It could take 3-5 days before we see a change in numbers, and then she could receive this IV infusion given once a week for up to 3 weeks before ultimately seeing the desired result.

In the meantime, she will continue on the steroids until the reticulocyte numbers are satisfactory before weaning them to an oral version.

Everything is just getting complicated and more complex.
•Ro started taking Amilodipine again for an increased blood pressure (secondary to the steroids)
•She also is now taking diflucan as a prophylactic (preventative) medication for other infections due to her extremely suppressed immune system (secondary to steroids as well)
• we still have a starving child willing to eat everything in sight, and we are struggling, but succeeding in the formula restrictions (thanks again to the steroids)
•the Lovenox (blood thinner) injections are going fairly well. She has an implanted catheter similar to an IV in her thigh which allows us not to poke her for every injection. It still burns going in, but at least this device helps to prevent the knots that can develop from frequent pokes.

Some baaaaad habits we are developing:
1. Eating all night long- I seriously feel like I have a newborn again. We are now up every 2-3 hours eating... Or trying not to...
2. Only sleeping when being held- yikes baby must need to feel some security!
3. Pacifier is back- But only when sleeping, or trying to, again, distract from food.

What are we ever going to do when we get back home??!! There are going to be some serious adjustments...

But we've been through a long hospitalization before- so I feel prepared.

It often feels like a rat race, or groundhog day, but there is always something new.
Today, we've got major construction and renovations going on one room over :)
And we spent hours hooked up to three different machines for the treatment- so there's been some spice.

And if you think Rowan sounds bad, let me tell you- there are so many other poor children here who have it much, much worse.

I can't wait to hear Woody tell us "give it up Ro, you've reached the end of the line" and then we'll get off this little ride and go back home. We have watched A LOT of Toy Story 3. So much so, that I find myself quoting it throughout the day. For example: Rex at daycare "why can't time go faster?!"

Anyway-
Thank you still so much for your continued love, support and prayers. We feel so surrounded with assurance that God's plan is going to see us through this and onto the next chapter.