Roxy’s Story

Are we ever getting out of here?

Well it’s day 5 and we’re still in the hospital with no idea when we will actually get out of here. I guess I should explain why we are here for those of you who didn’t see my Facebook posts.
We came into the clinic on Friday for a normal appointment (blood work and possible transfusions). When they did Roxy’s vitals, she had a temp of 101. When kids going through chemo have a fever and low blood counts, they are admitted to the hospital. They tested Roxy’s blood and her white count was basically nonexistent, so she was admitted. They started her on a broad spectrum antibiotic and ran blood cultures. She also needed blood and platelets. The good thing is that she hasn’t had a fever since Friday and her blood cultures were negative. The bad thing is that we are STILL HERE! Unfortunately, it isn’t safe for Roxy to leave until her white counts come up. She’s still getting IV antibiotics and they won’t stop those until her body can fight infection itself. They specifically look at a number called the ANC which measures the actual antibodies in the blood. Right now, Roxy has so few that they can’t even measure them. She needs to have an ANC of .2 for two days in order to leave. So, we are definitely here tomorrow and possibly Friday. This is the longest we have been in the hospital since this all started and it’s so frustrating. Roxy’s mood has been good and she feels fine, but she hasn’t been eating or drinking anything (she is really stubborn about eating and drinking while she’s here – I think it’s her way of rebelling and controlling something). We are working on that and trying to stay busy, but it’s so hard. Being stuck in this room for so many days is pretty miserable. Being apart is also really hard. Roxy misses Brie so much. My mom brought her up for a visit today and Roxy cried when she left. I miss Brie a ton too. Until this started, I had never spent the night away from either one of my girls. It’s so hard to be away from either of them. No matter where I am, I’m missing one of them. And since we trade places, Scott and I have spent a total of 20 minutes together since Friday. All of that time was spent exchanging important information about the kids. Sorry to complain, but it’s really tough.
We are getting close to the end of all this and we try to take comfort in that. Roxy has 2 more in-patient chemos – one five day and one overnight – so we can see the light, but the longer we stay here for an infection, the dimmer that light gets. Because her counts are so slow to recover, two more chemos could take two more months – it’s hard to say. But for now, we wait for counts to come back up and go from there.
As always, thanks to all of you for the thoughts and prayers. Love,
Stacey

One more down – 10 to go!

I’m writing this blog while I sit in the hospital. We came in yesterday for an overnight chemo. We should be able to go home today around 12. We have 10 more chemos left – 4 outpatients, 3 overnights, and 3 5 day stays. That means about 13 more weeks if there are no setbacks for low blood counts or fevers. Since there are always setbacks, we are looking at more like 16-18 weeks. It’s still a long way off, but I’m starting to see the light at the end of the tunnel.
As most of you know, we had some great news last week. Roxy’s PET scan showed no active cancer cells in her body. That means that the tumor didn’t spread anywhere else and is most likely completely dead. While we are really happy about the news, it is a cautious celebration. The road ahead is still tough. Chemotherapy continues as scheduled because there could be cancer cells too small to be detected by the PET scan. So, we will still be dealing with low blood counts and worrying about fevers and infections. Knowing that the treatment is working makes it a little easier though and it’s a good feeling to know when this is all over, we will be done and Roxy will be cancer-free and can get back to enjoying life as a 9-year-old.
It looks like we will be able to go to the clam bake next weekend. I’m so thankful to Tammy Guinan for organizing such an awesome event. I really hope lots of friends and family are there since we haven’t seen anyone in a long time. I know Roxy is looking forward to getting out of the house and seeing some friends. As long as she doesn’t get a fever, we will be there. Hopefully we can see some of you there.
Thanks again to all of you for your thoughts, prayers, positive thoughts, gifts, meals, etc. And a HUGE thank you to the Hale Road PTO and everyone who went to Chick Fil-A for the fund raiser. We are so thankful for the money everyone raised and donated. The longer I am on leave and paying my own health insurance, the tougher things get for us.
Take care, hug he ones you love, and don’t take anything for granted. Love to you all!
Stacey

We’re Still Here

Sorry for another delay in blogging. It’s been busy. Between doctor’s appointments, hospital stays for chemo, blood transfusions, cleaning, and taking care of the kids, the days just fly by. I don’t know what I would do without my mom here to help and people bringing us dinner. A HUGE thank you to everyone who has brought dinner or is planning to bring dinner. You have no idea how much we appreciate it. Also, thank you to everyone who has sent us gifts. We are so thankful for all the support from our wonderful family and community. One more thank you to Tammy Guinan for organizing a super cool clam bake for our family (and even calling a radio station about it). We are really hoping that Roxy will be out of the hospital and have good blood counts so we can go to the clam bake. I think it’s going to be a blast!!!
Roxy has been doing really well lately. She handled her last 5 day chemo like a champ. We are finding more ways to make the hospital stays better every time we go in. We bought a mattress topper to make the hospital bed more comfortable which has made a huge difference. Roxy says it feels like she’s laying on a cloud. This time, I also made up little gift bags for each day with little crafts in them. It worked out really well because she had something fun to look forward to every day. Luckily, I have a few weeks to decide something fun to do for the next stay. Let me know if you have any ideas.
The biggest recent news is that Roxy decided she wanted her feeding tube taken out. She had a very mature breakdown about 2 weeks ago. She said she was sick of having the tube. It made her feel like she was choking every time she swallowed, so even though she was hungry, she didn’t want to eat. It had also started to make her throat dry and sore (she has had it in since April). Her nose was irritated under the tube, and the skin on her cheek was raw from having tape on it all time. Honestly, if it were me, I would have been fed up with it too. So, on Friday night, I pulled it out (my nursing skills are becoming quite impressive – ha ha). We told her that she needs to eat a lot so she can keep it out. Unfortunately, she has lost a little weight since we took it out and I think the nurse practitioner wants to put it back in, but I’m really hoping we don’t have to. Roxy’s mood is soooo much better without the tube. She can eat and drink and be more comfortable. She is so much happier. I’m trying to load her up with calories so she can gain some weight and keep it out. We’ve noticed that kids with cancer who are a little older than Roxy don’t have tubes, but most of the kids younger than her have them. She’s kind of at an in between age. I’m just really hoping she can put on a few pounds and keep it out.
Today, the doctor said we should have new scans done in the next few weeks. That’s always exciting but also scary. Hopefully the tumor is even smaller, and this time, she will have a PET scan, so we can find out how much of the tumor is still alive. Bone tumors die and then are absorbed by the body.
We still have a long way to go with chemo. We are hoping to be done in January, but no one really knows at this point. Roxy’s bone marrow is pretty tired and it takes a long time for her counts to get high enough that she can have chemo again, so our schedule is pretty crazy. We do know that our next stay (which should be next week) is just an overnight so that’s pretty easy, then we’ll have outpatient chemo the following week, and after that it’s another 5 day stay. We should only have 3 more 5 day chemo stays, though, so that’s definitely a positive.
I think that’s about all the news. Thanks again to everyone for everything! We are all so thankful for your love and support.
Love,
Stacey

Another chemo in the books

We got home today from an overnight chemo stay and Roxy did AWESOME!!! She came home and ate as soon as she walked in the door (she never eats at the hospital because she says the food sucks – which it does). She had a great appetite before this chemo and I was really afraid she would lose it after chemo, but it’s looking good so far.
We have 17 more weeks of chemo. With delays due to low blood counts, that could be more like 25 or so, but at least we are getting there. At this point, our biggest concern is germs and fevers. As the season changes and germs become more prevalent, it is going to become more and more difficult for us to keep Rox healthy. We are all getting flu shots and I think I will have to make a rule that no one can come into our house who hasn’t had a flu shot. Even with that, I worry about colds and other viruses. The summer was definitely easier.
Scott and I are also starting to face the reality of the financial strain that all of this causes. I haven’t been getting paid for several months because I am on a medical leave of absence. Fortunately, my medical insurance was covered by FMLA until last month. Now we are paying over a thousand dollars a month for health insurance. Scott has health insurance offered through his employer, but it isn’t as good as mine and we would need to switch hospitals and doctors. We also have super confusing bills coming in from the Cleveland Clinic that don’t match our statements from Medical Mutual. All in all, the financial situation is a nightmare. We are fortunate enough to have great health insurance, but even at that it is a struggle. We are so thankful for all the money raised by Riverside Schools. Without it, we would be bankrupt by now. It just seems so sad and so wrong that a family who is dealing with a child with cancer would also have to face such awful financial hardships. Honestly. without help from family and friends, we would be living out of a car right now. That’s just wrong.
Ok. I’m sorry. I don’t want anyone to feel sorry for us. I just think it’s important for people to know what it’s really like. When you find out that your child has cancer, it is the worst feeling in the entire world. You never even think about money, but as time goes on you realize how impossible it is to make ends meet. On that same note, someone told me a while back that I should be able to work enough that I could keep my medical insurance. I think it’s really important for everyone to realize that all cancers are different and all treatments are different. Roxy has a Ewing’s tumor. While Ewing’s tumors are usually a “cure for life” tumor, they also involve the most intensive chemo treatment of any childhood cancer. For us, that means frequent hospitalizations and very little preparation. We don’t know every week when we will be admitted. We also have constant drops in blood counts which result in immediate transfusions. Again, I’m sorry. It’s just frustrating when people tell me what I should do based on a totally different situation.
Ok. I feel like my post has been angry. I apologize. I didn’t intend that. Roxy is doing awesome and she is being the amazing person that she is. I guess it’s just all the other stuff that annoys me. Thanks for reading this. I love all of you and thank you for your prayers and positive thoughts.
Love,
Stacey

Change of plans

For those of you who follow our story through this blog, I’m sorry for not posting very much lately. I guess sometimes I just don’t want to acknowledge what’s going on. When we have a really good day, it’s easy to forget about cancer and chemo and fevers and the whole thing. When I sit down and try to blog, it just reminds me of everything and I don’t want to face it.
Last week, we had a rare trip to the oncologist for blood work. Roxy didn’t need a transfusion which is very rare. It was a good and fast visit. Unfortunately, Roxy hadn’t reached “rock bottom” on her counts at that point and we were concerned that she would hit the bottom over the weekend. I’m afraid that happened last night and today. When I gave her a neupogen shot last night, her arm blew up – it looked like she had a golf ball under her skin and today she has a nasty bruise. That leads me to believe that her platelets are really low. She was also tired and really pale today so I’m guessing her red blood cells are low too. I called my “go to” nurse (thanks Jackie) and then eventually the doctor today and everyone agreed that we could wait until our appointment tomorrow. I’m guessing it will be a long day tomorrow with transfusions of both red blood cells and platelets, but who knows.
Back to the title of this blog, we had a very happy change of plans in Roxy’s chemo schedule. On the schedule we were originally given, she was supposed to have a 5 day hospital stay for chemo then a week off then another 5 day stay. This was something we were all dreading. We found out last week that the protocol we were originally given was for radiation half way through chemo instead of at the beginning. Since she had radiation at the beginning, we can move the 5 day stay back, so our next hospital stay will just be an overnight. I think this will be a lot better for everyone’s mental health.
We have also changed our doctor visits around a little bit. I used to take Roxy and my mom would stay with Brie. We started all going together and it makes a huge difference. It minimizes my time away from Brie and gives me my best friend to talk to while we are there. On days with transfusions especially, this has been so nice. I love having my mom and Brie there. I’m so thankful for my mom. She makes everything so much easier for me and keeps my spirits up by coming over every day. I can’t ever thank her enough for giving up everything to be here with us. I love her so much.
Today was kind of a rough day. Roxy was really worn out and tired and she just didn’t look good. I think it was mostly because of her blood counts being so low, but it made me a nervous wreck all day. I kept feeling her head for a fever (which drives her nuts). She felt good most of the day, but later in the evening she felt warm so I took her temp and it was 99.8. That was scary because 100.4 means we are back at the hospital. She said she felt fine – no pain or chills. I wanted to take her temp every 10 minutes, but luckily I have Scott who is much less of a worrier than I am and who also helps me to realize that I’m not helping Roxy by freaking out all the time. So, I let it go and by bed time she didn’t feel warm at all. Hopefully that will let me get some sleep tonight.
Tomorrow is the first day of school and it feel so strange not getting ready for it. I miss my job and my friends at school. Roxy misses school and friends. Brie REALLY misses her school and friends. It’s hard. I think that instead of withdrawing Roxy and home schooling her, Riverside may let me be her home tutor. That would be the perfect situation. I’m really hoping we can make that happen and I am so thankful to work in such a great district.
One last thing – so many of you tell me that you don’t know how you would handle this and how amazing I am. I really appreciate that, but I think you should know that I am not always the happy, positive person you think I am. I had a total meltdown Friday night. I lost it completely and cried so hard and for so long that my eyes were still swollen the next day. Scott was amazing and made me feel much better. I am so lucky to have him and we are a great team.
Sorry that this was so long tonight. I’ll post more often so they will be shorter in the future. Thanks again to everyone for your thoughts and prayers – it means so much to us. We really couldn’t get through all of this without you!
Love,
Stacey