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So here we are- only 11 days after everyone else started school- and she’s back to school! Not too bad!!! She is going for a half day today and tomorrow, and then taking off on Friday to return to Hopkins for labwork, etc.<\/p>\n
Here’s how we got to today.<\/p>\n
I’ll start with the day after the last post, as I was able to get Bridget in to see an ophthalmologist that very next day. I watched Bridget take the eye exam and it was obvious that she was having some significant vision issues. After some discussions of some scary things that it COULD have been, it turns out that Bridget’s eyes are just severely dry- another side effect from several of the chemo agents. I was surprised that dry eyes could cause the degree of vision issues that she was having, but they said having dry eyes can cause even worse. They explained that the layers of tissues in the eyes interlock like legos. When the layers get dry, they shrivel up and separate, causing light to refract all over the place- thus explaining her sensitivity to light and her blurred vision. Thus we have started artificial tears- just over the counter drops- at least 4 times a day (or more if needed).<\/p>\n
On a side note, Bridget HATED the whole ophthalmology visit. She said it was the worst doctor visit she ever had. Everyone was very kind, but it was extremely uncomfortable for her. After all the poking and prodding she’s been through, you’d think the eye doctor would be a breeze, but she couldn’t stand the multiple eye drops and especially all the lights shining in her eyes. Poor Bridget tried to be still, but she sat in the chair and her arms and legs would start flailing when the doctor would shine a light in her eyes. I told her that I could relate, as I’m not a fan of the eye doctor myself. She was upset that I didn’t warn her of how bad it would be. In the end, she told the oncologist on Friday that she’d rather do another whole round of chemo (one of the more tolerable consolidation cycles, not one of the terrible first two cycles, mind you) than return to the eye doctor. That got a good laugh!<\/p>\n
It was Friday, September 13th<\/sup>, when we returned to Hopkins for labs and met with Dr. Molina. Her ANC was fine at 2.55. Her Hemoglobin was low at 8.8. Her platelets were still really low, at only 18. However, they decided she didn’t need any transfusions since she wasn’t symptomatic (no nose bleeds this time!), but they wanted her to come back on Monday, to recheck the labs. They needed to be assured that her numbers are coming up. The main thing holding her back from returning to school and dance at this point was her platelet count. She is at a high risk of bleeding with such few platelets. They wanted it to be above 30 and preferably closer to 50. With her ANC up, the risk of infection is no longer a main concern. She is so excited to not have to wear her mask out in public anymore!<\/p>\n The other ongoing issue is her feet and her ankle. We noticed on Wednesday that her left ankle was swollen. She does not recall injuring it. It didn’t hurt unless she pressed on the swollen areas. It improved a bit by the time we saw the doctors on Friday. They weren’t really sure why it was swollen- but it is something we are just watching. The same with her poor feet. Her skin is peeling through two layers in multiple areas- on her heals, big toes, etc. This is pretty tender. All of her toes are red and sore, especially around the toenail areas. The doctors don’t see any signs of infection, but told us to watch them carefully as these areas are at a high risk of infection.<\/p>\n Her feet led to a discussion about dance. The doctors could tell she was a dancer because her feet are strong. Throughout treatments, they would routinely check her strength by having her do certain movements- some of which focused on her feet. They would have her point\/flex against their hands, push to the left\/right etc. It actually became an ongoing joke because Bridget would always get confused and do the opposite of what they asked. They’d tell her to push her foot against their hand and she would flex it instead. When they asked her to flex, she’d point. Anyway, when she finally pushed in the right direction, they’d comment on her strength and how she must be a dancer. Our family has an ongoing argument about whether or not DANCING is a sport….and so we brought the doctors into the debate. We had three doctors, the attending, fellow, and resident, all discussing this point. Scott feels that it is ATHLETIC, but not a SPORT. This led to some of the doctors showing off their not so althletic, nor sporty, dance moves.<\/p>\n Anyway, Bridget still has a bit of time before she is ready for dance. She is starting pre-pointe this year and can’t wait…but we don’t want to go through the whole pointe shoe fitting process until her feet have healed. She also needs her Hgb to come up before she can do any physical activity. Being anemic she will tire easily and is at risk of her heart rate getting dangerously high (tachycardia) with physical activity. We talked about the possibility of Bridget going to her first lyrical class- another new dance class she is taking this year- which is slower, like ballet, but the doctors were worried about something like a simply stumble, or someone bumping into her, to cause internal bleeding. And so we will hold off on dance as well. We’ve got to get her into school first and obviously don’t want to do too much at once regardless.<\/p>\n In terms of follow-up, we’ll still continue to go every three days or so until her labs recover. Then we will return monthly for a few months, which will turn into every three months, and eventually every six months, and then annually. She will get a final PET Scan sometime at the end of October- at least six weeks from her last treatment.<\/p>\n On Monday, September 16th<\/sup>, Scott took her back for repeat labs. Her ANC continued to rise- it was actually above 12000! Her platelets rose to 99. But her Hgb dropped to 8.3. Still not low enough to need a red blood cell transfusion, but still pretty low. Thus the decision for her to return to school, but with only half days at first, and no PE, until her Hemoglobin comes up more.<\/p>\n Yesterday, Bridget and I went to Loch Raven Technical Academy for a tour. She saw where most of her classes will be (in the 6th<\/sup> grade hallway), and found her homeroom. We met with her guidance counselor, who has been wonderful with communicating over the past few weeks. We also met the school nurse, who also works in the pediatric ER at Hopkins! We couldn’t ask for a better situation there! She actually works there full time in the summer and only on weekends during the school year. She knew all about Bridget and her history. She had gotten a report already from Bridget’s elementary school nurse. Everyone was on the same page. Since her school only does 4 classes one day and 4 classes the next day (on an A day\/B day schedule), we decided she would go to her first two classes today and then her first two classes tomorrow, leaving before lunchtime both days. Friday, since we have to return to Hopkins, she’ll just take the day off, which will also give her some time to recover and catch up on school work if needed at home.<\/p>\n In preparation for back to school, we took some time this weekend to finish shopping for her school supplies (which, by the way, are hard to find at this point as the back to school sections have been replaced with Halloween decorations). It took us a few stores to find a 3 subject notebook which her math teacher recommended. She decorated her new binders (one of which is covered in FRIENDS stickers). We also needed to get materials to complete her summer assignment. I thought she may have been excused from it, but her performing arts teacher noted it wasn’t due until this week and asked that she still do it. I attended back to school night last week and got a chance to meet almost all of Bridget’s teachers, all of whom have been wonderful and not too worried about her catching up\/making up assignments. I did get the math assignments from the math teacher, since Bridget was really worried about that class the most, so Bridget did start working on those.<\/p>\n For the performing arts summer assignment, it really wasn’t something difficult. She had to make a poster and write two paragraphs about a musical artist. There were about 20 choices of artists and Bridget decided upon Carrie Underwood. I’m only mentioning the poster because you all have heard how much Bridget loves her arts and crafts. I’m a bit worried the teacher is going to think I did the project! I took pictures of Bridget working on her cricut machine- to professionally cut out the letters for the poster in case I need evidence that Bridget made the poster.<\/p>\n With her completed poster and new bookbag full of new school supplies, not even caring about\/wanting to wear even a beanie to school- Bridget was out the door at 7 a.m. That’s a big change from the 8:30 a.m. elementary school departure time from last year. She has embraced her baldness- she is bald and beautiful! If she wears a beanie in the future, it will be to keep her head warm, or simply to accessorize ????<\/p>\n","protected":false},"excerpt":{"rendered":" So here we are- only 11 days after everyone else started school- and she’s back to school! Not too bad!!! She is going for a half day today and tomorrow, and then taking off on Friday to return to Hopkins for labwork, etc. Here’s how we got to today. I’ll start with the day after […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-26","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/posts\/26","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/comments?post=26"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/posts\/26\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforbridgetd\/wp-json\/wp\/v2\/media?parent=26"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}