I don't even like jelly beans, but apparently I do...that makes no sense huh? As I sit here digging through the bowl of jelly beans, hoping that another pink one will show up, I know I'm putting off blogging. Life isn't crazy, not really that busy, life at home is actually pretty quiet. The only time it gets loud is when SG wakes up and needs to eat. My mom has returned home (only an hour away) and Noah, SG, and I are settling into our "new normal".
I continue to marvel at SG's demeanor. She's so calm and peaceful, sleeps beautifully, is finally starting to be awake for more than the 20 minutes she's eating. She doesn't really enjoy getting in her car seat, but she sleeps great it in. She's wiggly as can be when you change her, and she has the skinniest little hiney...(not something she got from me!!)...and her diapers continually slide down! She "smiles" lots and makes the funniest sounds. If you had to have a new baby in the midst of all our family is going through...this is the baby you'd want. To me that's all God's doing. I've never felt closer to one of my children this young, hope that doesn't make me sound like a bad mommy. I love my children, I want to spend every minute I can with them....I will usually put up with Noah's touching everything in the grocery store, just to have him with me...but I've never been a "baby" person.
When I first met Richard's family, I was amazed at how much they LOVE babies. They would fight over who gets to hold the baby next, and I never understood it. I remember being terrified when Richard's sister had her son and they wanted me to hold him. I had never held a new baby before, and never really wanted to. Of course once I had my own babies, I loved them, but I wasn't one who would hold them for hours. I never felt that amazing connection until they were a few months old. Honestly I just felt like a cow for at least the first 2 months...all I was good for was feedings. I can remember crying constantly in those early weeks. I think a lot of it was because I had an amazing husband that took care of everything else, so all I really had to do was feed them. This time around its completely different. I feel so close to SG, she needs me and right now I'm the only one who can provide what she needs. I needed this right now, I needed to feel like a mom again, like I was doing something for someone. I had been struggling a lot with not feeling like Ellie's mom...or at least like I was able to do anything to help her, so its very nice to feel needed again (and not just for milk).
As much as I love being Mommy right now, I hate that Richard is missing this. I know he misses it too, I know its for a great reason....but it doesn't make it easier.
Ellie updates....I will attempt to summarize/use Richard's words, there isn't that much to update...which isn't necessarily a bad thing, Ellie is just rolling right along with every treatment and every new visit...she's amazing!
Monday (April 1)
Ellie's week started out a little slow, we had physical therapy first thing in the morning. Ellie wasn't as interested and took a little more motivating than it usually does. Ellie loves to go play with Angela (or student Ally) and is usually out the door saying 'see you later' dad before I have a chance to say goodbye. She went 'grocery shopping' for Dora and then made her dinner. They did some work on the stairs, she is a little weak when coming down the stairs and usually doesn't look where she is going. They kicked a ball around, played on the slide, hopped on numbers on the floor then called it a day.
At the clinic to check her blood wok, her numbers were dropping as expected, but the only real concern was that she was showing a little dehydrated...which is a road we've been down before and we'd like not to go back there. Richard promised to work hard on getting her to drink, as to avoid having to bring home another "IV leash". Can you imagine having to keep a two year old within a 5 foot range at all times?!?! (but he is Super Daddy, so we know he could do it!)
You could definitely see she wasn't feeling her best. The doctor said she had "chemo" eyes. Her eyelids were pink/red and she was starting to get some dark circles under her eyes.
We joined the family dinner tonight at the Target House. They have at least one per month and also have a brief meeting with the attendees afterwards to let everyone know what is going on and to answer any questions. We left in the middle of the meeting because Ellie wasn't feeling so great. We left dinner and ended up snuggling on the couch watching Happy Feet 2.
Tuesday April 2
Ellie woke me up at 7 a.m., or at least that's when I finally gave in to her early morning toe taps on my back. She decided she was going to have spaghetti for breakfast so I obliged (the doctor says to give her anything she wants, OK)!
We caught the shuttle to the hospital and our new visitors (Mawmaw and Aunt Kimmie) met us there shortly after! Ellie was ecstatic and so were they! We jumped right into our appointments..
Right after lunch we headed to E-clinic to check-up on our blood work. God's good grace was with us because Ellie wasn't showing dehydrated anymore. This was kind of a surprise because she hadn't had much to drink in the past day. We were happy to be leaving there without our IV leash. Ellie's Potassium was showing a little low but was no concern to the doctor since it was just barely in the low range. We'll eat a banana hopefully tomorrow to take care of that.
Ellie's overall health today was good. Her nose wasn't as runny and I let her take an hour+ nap (I let Mawmaw and Aunt Kimmie take a nap too). She was in better spirits through all her visits (I'm sure having some new faces helped that as well). We picked up packages in our mail today and she enjoyed opening them and showing them off to Mawmaw and Aunt Kimmie. She got some new nail polish which I guess I will have to put to use since her toes are almost bare now.
Wednesday April 3, 2013
Our day started early at 8a.m. With an appointment in assessment/triage, Ellie had to have blood work done. We met with Dr. Andrea in the clinics shortly after to review the results:
Ellie's ANC count dropped down to 100, so she is neutropenic. She does have to wear a face ask anytime we are outside of our apartment to avoid infection. We haven't convinced her to wear one yet while we are hanging out in the apartment, but it is inevitable, as soon as we have to leave the room she will have to have one. She will have more blood work on Friday, it is expected her ANC will hit zero before it builds back up. Other than that we are two avoid crowds and sick people
Her Hgb (Hemoglobin) is at 8.3, and is expected to continue to drop. When it is in the 7-8 range she will need a transfusion.
Her platelet count is 141,000 about half of the previous blood work. 20-50,000 is the range for platelets before that will do a platelet transfusion.
She had her first eye appointment today, just looking to get a baseline for where she is. She has had some problems looking up with her eyes, this is consistent with the hydrocephalus she had at the very beginning. In all, there wasn't anything outside of what her was expecting to see given the location of her tumor.
Back to Carly....
Some of you may know already that Ellie did have to receive a blood transfusion on Friday. Richard said she slept through most of it, but once it was over that evening he could see a change in her, her energy level was back up. So far this week's chemo hasn't had that large of an effect on her. When we talk on the iPad's she is her normal 2 year old self, with a little bit of an attitude, but what princess doesn't have a little "tude" to her. You can see when she gets tired...but she always has that beautiful smile that touches your soul and says...its all gonna be okay!
Noah is having a hard time with them being away, he misses them so much. His normal emotional self becomes overwhelmed easily. He reminds me so much of myself...when he can't do something right, he falls apart, and then the tears come, and then he misses them. Richard got Noah and Ellie these great dolls.
Noah has an Ellie doll and Ellie has a Noah and Sarah-Grace doll. Our Ellie doll has been going everywhere with us lately, and doing everything with Noah. He enjoys it so much. Noah wants to go to TN now and doesn't quite get why we just can't get up and go...some days I'm right there with him...I'm 2 seconds away from packing the car and leaving (but the anal organizer in me would never do that!)
Noah's biggest worry is about Ellie losing her hair. He's afraid she might be scared or that she will look scary. I gotta admit, I'm right there with him. I keep waiting for that morning where Richard tells me it has started to fall out, its a weird feeling. She doesn't have all that much hair to start with, but when I look at those chubby cheeks I just can't imagine it yet. I'm thankful I crochet and can make her all the hats she will ever need...but I'm anxious. If you looked at her now, you'd never know she has cancer, but once her hair is gone, it will be pretty obvious. Not that I don't want people to know...I'm thankful this little face is getting the word out there, that there are these cancers that no one really seems to know how to fix. There's no answer to how to make it all better...there's ideas and research currently going on, but there's no solution. Richard has signed Ellie up for all the research studies going on at St. Jude's that relate to her tumor, and how I pray that something will be learned from this little girl that will help out another child along the way.
I could go on and on right now...probably because it is now Sunday morning, and all is quiet. I started this last night, but had to get some sleep. I should really go and start getting ready for church, since getting ready to go anywhere seems to take 10 hours longer than it should...another thing I forgot in between babies! Before I go, I have to again say thank you. Thank you for taking the time to ready about my family, for caring so much about us, thank you for praying daily for us. Thank you for sharing our story with others. Thank you for all the donations, and cards, and gifts! Thank you for the bake sales, lemonade stands, bracelet sales, and change jars. To know that we are so loved by our community makes you feel like you can conquer anything. Without the continued support of you all, this journey would be so much harder. I pray that you will feel the same love from our family as we pray for you all and praise God for you daily!
"And this is his command: to believe in the name of his Son, Jesus Christ, and to love one another as he commanded us. The one who keeps God’s commands lives in him,
and he in them. And this is how we know that he lives in us: We know it by the Spirit he gave us."
1 John 3:23-24
Keeping up with the blog can be hard at times, with brand new baby here, but we are pretty good at quick updates on Ellie's facebook page. If you'd like to follow along and see some great pics of all the fantastic things people are doing to help us, you can follow along at https://www.facebook.com/ElliesElite
Prayers, Praise and Pink