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| Emily opening her package from Sue with a Justin Bieber Notebook! |
Two weeks have passed since Round 2 of MIBG Therapy. We have 3 weeks left before we head back to Philly and see how this Therapy did for Emily. And yes, I am counting down, counting down because of the fear of what it will bring or that we learn. Last time we had 6 weeks, but this time they scheduled her re-evaluation scans at 5 weeks.
As you recall Emily had her stem cells given back to her last Monday, which this leaves her with 3 bags of stem cells left, Thursday she had clinic and needed both platelets and red blood because they were both low. Her ANC and WBC dropped again, so still being very careful of her not getting sick. Doug was sick for a few days, so he actually slept on the couch not to get Emily sick. However since being home from Philly this time, Emily just hasn't been herself. She seems very tired often so much easier, she isn't eating much (where we have started the periactin again since she isn't eating much and her weight is down), and honestly just not herself. Some days she has been very quiet, not saying much but been very whiney and she has had a few days where she has been saying her stomach hurts (which has gone away after giving her some zofran). Monday, Jan 30th will mark 7 days from when she received her stem cells back, so we should start to see them working within 10 to 14 days.
The past 2 weeks since we have been home have been really hard. Hard because we have a lot of questions, so we have been asking a lot of questions to our onc here at VCU, reading a lot anything and everything, and hearing a lot of children passing and honestly we are scared. Scared about all of this and what it all means. Last night Doug couldn't sleep, and he was up all night reading and reading, he couldn't stop. He is again reading tonight while I am updating.
Thursday we did speak with Dr. Sholler from Michigan via phone conference, she is one amazing women and knows her stuff. Dr. Sholler told us yes we have some options, but only if Emily's platelets are at 50 or above, meaning they have to recover. If they are not, we won't have any options anywhere, so we are very hopeful that we start to see her platelets recovering soon.. She says since Emily has never had a bone marrow issue, then her platelets and hemoglobin should recover on their own. However, when we go back to Philly on the 20th, Emily will have her bone marrow checked again, since her last one was in November. Dr. Sholler has told us what she has available right now, but before we get too ahead of ourselves, she wants to see Emily's scans, so we will send those out to her over-nighted tomorrow. We may be taking a trip to talk with her, but we will wait to see what comes out of her looking at Emily's scans. We are trying to stay ahead of the game and just know what we have available.
Overall, we are all home together and enjoying our time together. However this time home compared to the last time, it so much different because our minds are not where they were before. Right now we are just trying to keep our head above water. Its scary, we are seeing CANCER everywhere out in the community, what is coming to this world. We really need some awareness for Childhood Cancer and the awareness.of Neuroblastoma. To keep this post from going array, I will leave it here...but make sure you hug and kiss your kids and tell them how much you love them.
Update on somethings going on right now...
--will have more information for some fundraisers that are being worked out right now.
--We are working a project ourselves going on right now...we are collecting (not expired) coupons for items such as; shampoo, conditioner, chapstick, deodorant (men and women), toilet paper, tissue, hand sanitizer, razors, shaving cream (men and women), womens needs and many other things. Since we don't have the money either, but we really want to be able to give back and pay it forward, so we are using these coupons to work out the deals at several different stores to get these items for free to make bags for newly diagnosed families at the Children's Hospital of Richmond. My sister in law, Tricia, is getting some Team Emily bags made and once we have enough to make at least 30 bags, I will be teaming up with Connor's Hero's who makes bags with different items in them for families as well. If you are interested in helping out with this cause, you can send your stuff to PO Box 5383, Midlothian, VA 23112.
