A little blog remodel today. I am itching to change things around our house, but don't have the money, time or extra sets of hands necessary, so I redecorated the blog instead.
Yesterday's blood transfusion was easy for Scarlett, despite the seemingly inevitable "unknowns" that we come up against with every procedure. This time, it was allergic reactions. The last time she had blood products, she had two hives pop up. Subsequently, her chart was marked as "allergic to blood", which means they still give her blood as needed, but give her a Tylenol/Benadryl cocktail to quell any reaction (the idea that she is allergic to blood is confusing, but seems to be no big deal for the doctors or nurses). The circumstances were such that we don't think the hives and blood were actually related, but it could not be changed until after this transfusion.
So, after starting an hour late and waiting the 5 hours for the red cells and then platelets to go in, we were packing to go home. As the nurse came to de-access the port, she noticed a red blotch. This instigated a hour of waiting to see if any more redness appeared, or if any breathing problems cropped up. Nothing came of it, so she was cleared to go, though I don't think they will clear her chart yet. We finally got to leave around 8:15pm, 7 hours after we arrived. She is pinked up and seems to be handling it well; we go back tomorrow for more labs to see if the transfusion has resolved the low numbers. We're crossing our fingers that, in addition to the red cells and platelets being replaced, her white blood cell count will have increased (on its own - these cells cannot be transfused) and we can stop the daily shots for a few weeks.
Slightly nerve racking is the appointment I scheduled today: her first full-detail MRI since surgery (the MRIs she has had over he last two months have been to check the fluid in her brain ventricles, but are low-resolution and don't show tumor). This is the only way we can track regrowth, so every two months we will hold our breath and hope the chemo is doing its job. The tumor is most likely to regrow in the first 6 months after surgery, but could at any time for 5+ years; even if she is clear now, she will continue to have MRIs for many years.
A few delayed THANK YOUs to Sandy Tebow, Joanne and Ron Manhire, and Nancy Kratochvil for the delicious dinners! We are enjoying everyone's creativity with Chris' vegetarian diet!
love the new page!!!! still thinking of you always!
I Love Love Love your banner!!! And I know you probably already think so, but her head looks great! Peyton has brachycephaly..and her head is a little less wide than that, but with her hair we decided not to do a helmet.
Fingers crossed labs tomorrow are on the rise, and for a nice clean MRI!
Love the blog look, super cute! Hoping all tests over the next few days come back great. And- I didn't know you could be allergic to blood, you learn something new every day. I will continue to pray for Scarlett and your family, as I have from the first time I read your story.
Loving the new look, praying for your family always! She is a miracle & you & Chris are so strong.I check everyday for updates always in prayer for positive news. Scanxiety is very normal & I will pray extra hard concerning this. Prayers, hugs & blessings from Alabama, Jennifer Sargent
Scarlett looks so cute as your banner. Love it.
You are so welcome for the dinner. I just wish you could have avoided the trip the ER that night. :-(
Hi, I am from babycenter and have been reading along and praying for sweet Scarlett (I have a 5 month old lil miss myself). I also work in a hospital laboratory and just wanted to say, allergic reactions during transfusions are usually an allergy to some product in the blood (perservatives, anticoagulant, etc) rather than the blood itself. Best wishes to your family.
Love the remodeling! We will keep Scarlett in our prayers so that her MRI comes back clean. I feel a special connecting to this angel since my son is only a day older than her 10/15. As a mother I admire your strengh, and I enjoy reading all your blogs thank you for sharing the journey! :)
Like the new design! Can you come over and teach me how to do that to my blog? (in your spare time) Haha! I crack myself up!
You two are an inspiration.
*when* she is clear, not *if*, thinking of baby Scarlett. I like the new look and her purty face on the banner up top.....lots of love from Austin, TX
I've seen on the news recently about this new test being developed at MGH in Boston that suppose to help doctors detect if cancer meds are effective. You test the blood I believe and it can tell you right then if it's helping rather then having to wait through weeks/months and they can adjust things as they need to. Sorry I kinda vague on the details I'll try to find a link somewhere for it. I think it was actually an iPhone app that was developed for it which is what caught my interest. I'll be back with a link hopefully. Maybe you can show your doctors
I found the link. I guess right now it's used for biopsies but they said it could potentially be used to detect cancer in the blood. The last paragraph mentions it. It's a short read but interesting. It might be something to tell your oncologist about. Here's the link: hopefully it works cus I'm on my phone and I think it formatted for a smartphone.
I love the polka dot design. It is really neat. Scarlett is an inspiration. I pray that her MRI comes back clean. Hugs from PA
My thoughts and prayers are always with you all. I will be praying for a perfectly clean MRI. I'm praying for complete healing that baffles the doctors. I'm also praying for renewed strength for you and Chris. I know this has to be taking a major toll on the both of you. Your strength this far is amazing. You are a perfect example of AMAZING parents.
Sending lots of love from MD,
Meghan & Baby Ryleigh
I love the blog redesign it loads sooooooo much faster. As always keeping you in my thoughts and prayers.
The new blog is adorable! I feel like I know Scarlett, because I check in to read everyday!
My heart aches for her! I have a daughter only a few days older than her, I think you and your husband (and Scarlett) are so increadibly strong! She will continue to be in my thoughts and prayers!
-A fellow BBC October Momma!
I love the new look! Glad Scarlett had handled the transfusion well! Keep it up little one!
Hello from N. Carolina! Love the new look - perhaps you should think about adding google ads to the side of your blog. It's quick and free and you'll make a little revenue without having to do anything else (every bit helps, right?) You have so many followers that I bet you'd make several hundred dollars! I don't think a single reader would mind (heck - I'd click on the ads to make you $$) Just something to think about...
Sending my best to your family and Scarlett!
We say a prayer for your baby girl EVERY day! She amazes us and has touched our hearts in so many ways! ~Love the new Blog~
~BBC October Momma from WI
Love the page!! Your daughter is beautiful. :-) Prayers everyday!!
Love the new look. Go Scarlett! Praying for you all. :)
ABsolutely love the new look! So cute : )
God Bless the littlest butterfly and we are still praying for you all in Boston, MA
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