I’ve posted a lot of uplifting, fun stuff lately, because that’s what’s been going on around here, but I’ve neglected to share much about Emily’s health! Overall, of course, she is doing great. The protocol of treatment has kept her in remission, and we haven’t had any setbacks in a long while. With the end in sight, things seem to be smoothly sailing along.
Emily’s current course of treatment is the same as it’s been for a year and a half. She receives a monthly IV chemo infusion (Vincristine), a monthly IV antibiotic infusion (Pentamidine), a monthly IV Immunoglobulin (IgG) transfusion; she takes daily chemo pills (Mercaptopurine), once-a-week chemo pills (Methotrexate); and she has one 5-day long pulse of steroids (Prednisone) each month. She was receiving spinal taps with chemo (Methotrexate) each month, then every three months, but she had her last one in April. And of course she has a myriad of support meds prescribed for her to take on an as-needed basis. Meds such as Tylenol for pain, Colace and Miralax for constipation, Famotidine for an upset tummy, and a couple anti-nausea meds. She rarely takes these, as we don’t like to introduce too many extra chemicals into her system -and no, the irony isn’t lost on me, since we give her actual poison each day. But we do try to help her get through side effects as naturally as possible, so I’d rather have her eat a few prunes than give her Colace. But, of course, we give her whatever she needs if she truly needs it. It really helps that she’s now old enough to effectively communicate how she feels!
Anyway, like I said, overall she really is doing well. She has energy and spunk, and people who don’t know her cannot tell at all what she is going through. Often, people who do know her but haven’t seen her in a while are quite surprised at how healthy she looks! And for that we really are thankful. She is strong, tough, and a fighter, and I think she is handling her treatment really well.
But underneath her glowing cheeks, longer hair, and plump belly, I can see how much of a toll the last 2 1/2 years are taking on her body. Around Christmastime last year she began to develop a rash all over her body. That has since faded, but in its place is dry, peeling skin. Her hands and feet are the hardest hit, though we’ve been able to effectively treat them with salves and oils. But the bottoms of her feet are often peeling, and her fingertips peel so much that she’s taken to nibbling the loose skin off, causing her fingertips to bleed. Sometimes her hands hurt so badly that she holds them out to me and cries and cries. We rub oils on them and I rub them, and I pull them out of her mouth every time I catch her nibbling. Her nurse practitioner says it’s a common side effect of chemo, and we believe it will go away soon after her treatment ends.
Another side effect we’ve noticed more and more is pain and tiredness in her body. Neuropathy and leg pain have haunted her throughout her treatment, both from the cancer itself and from the treatment, so it’s nothing new. However, there are periods of time when she’s really in more pain than usual, unable to play as long as usual, and simply tired. Often she complains of head and back pain, and most nights I help her get to sleep by rubbing her body, head to toe. I was quite concerned about it at the beginning of May, and expressed my concerns to her nurse practitioner during her monthly clinic visit. But when her labs returned normal, Kay proclaimed it another side effect, saying that Emily’s body is just plain worn out.
A few weeks ago she developed a slight cough that won’t go away, nothing serious. It’s probably, most likely, just a simple allergy-type cough, but it’s one more thing I’m paying attention to.
I’m really looking forward to June 26th, when she takes her last does of chemo! My heart just sings, Praise God! Hallelujah! at the thought! I cannot wait to have my little girl completely back, free of poisons and toxins -and cancer.
After Emily’s treatment ends, she’ll continue to visit her oncologist once a month (though she actually now sees her nurse practitioner each month -see below for the funny reason why!), and she’ll have a monthly lab draw. They’ll be watching her blood levels to make sure everything’s staying as is should (ANC normal, WBC normal, etc. ), and they’ll also check her IgG levels to see if she needs a transfusion. We really have no idea how long she’ll continue to need this support. The normal IgG range is 528-2190, and her labs each month come back at 360-430, so she’s still running pretty low. Hopefully, once she’s off treatment, her immune system will kick back in and begin making IgG on its own again. And she’ll continue taking antibiotics for another six months, but these shouldn’t affect her health.
So that’s what we’re looking at! It saddens me to see Emily in pain, but I’m grateful we’re nearing the end, and it’s not as bad as it could be. God created her perfectly, strong enough to fight this.
On a totally unrelated note, here’s a bit of fun: the dress Emily wore to the MWOY Gala was created by one of my favorite children’s brands, Eden’s Bouquet. My mom sent a photo to the designer, who posted it on her website.
** When Emily has clinic each month, she sees a variety of doctors and nurses, and her exam isn’t always performed by her oncologist, but rather sometimes by another specialty doctor or the nurse practitioner. Remember when Emily broke her leg last May? And when she developed a sepsis infection last August? Well both events occurred just days after her monthly clinic visit, and coincidentally, both of those times her oncologist, Dr. Ducore, was the one who did her exam. Well, he’s decided that he’s jinxed, so instead of performing her monthly exams, he lets the nurse practitioner, Kay Wells, perform them, and he just pops his head in to say hi and ask if we have any questions. He always pokes his head in the door, and says, “I’m not here, in case you have any questions.” He’s a hoot.