I hate waiting. Waiting for answers and waiting for more information. Waiting means patience and that is something I have no more of. No more days to waste, no more time to just sit, no more weekends to lay dazed and confused, no more weeks to let slide by. No more....waiting. But yet, here I am. In the patient holding pattern that is our life. Waiting for the next test result.
I had an MRI done when we came home from Miami. I had been having balance issues and dizziness but no other explanations were completely clear (could have been a number of things) so I did the MRI. It was just of my brain so it wasn't so bad. A "short" hour long test and I was ready to go. I really didn't think much was going to come of it, but I got a call. Something showed up so my oncologist wanted me to go see a neurologist. He called about an hour later and wanted me to be there in an hour and a half - nuts, and at first I couldn't do it, but an appointment got canceled so I went. There was contrast uptake in my cranial nerves. He pulled up the images and searched for a little bit and then he found it - ever so faint uptake of dye in my cranial nerves. Everything else was normal (and pretty cool looking). He did the barrage of testing that comes with a neuro consult - look at my finger, touch your nose, walk on your toes, memorize these three words, etc. I passed with flying colors. I had had some facial muscle issues while we were in Miami - all of a sudden I dripped water out of one side of my mouth - but it had gone. And my balance was doing better since I started PT and my dizziness better now that I was moving more. We decided to do some digging before doing further testing.
The weekend passed and I had found some interesting case studies that I thought would keep further testing at bay, but the neurologist decided it wasn't enough. I needed an LP to check my cerebral spinal fluid. Boo. My biggest annoyance? I HATE local anesthetic. With a major passion. In reality, that was my only hold up. I hate local - avoid it at all costs. So I went in on Friday - watched the new president give his speech while I signed paperwork and the doctors and nurses took my vitals (a great way to get a good blood pressure 😜), and then he did the lumbar puncture. It really wasn't bad - but I tensed everything up in fear of the hated local, so my back was sore for a couple days. Most of the testing will take about a week, he told me, but a few things will be back in a couple hours. I was hoping those things would be negative (not sure why I thought they would be), but he called me a few hours later. No bacteria - that's a good sign. But elevated lymphocytes and protein. This - of course - tells us something is happening, but gives us no conclusion of what. So now we wait. And wait. And wait. It's been like two days and I am already done waiting. It's going to be so much longer. Especially if they don't find anything - which will mean they will test things like a thousand times to be sure. There are two main possibilities - one, the Hodgkin's is in my brain; two, it's a side effect of the medication (akin to Guillian Barre syndrome). We are hoping for two, but that then puts me at an impasse for treatment. Although I'm having no symptoms so is it really that bad? I don't know enough about neurology to know. Just something else I have to read up on.
I'm annoyed. I do enough research, and I have better things to be researching than this. Plus I have some cool new books I'd rather be reading (yes me!). So if anyone wants to dig around and figure out how bad uptake in my cranial nerves is, and then about if that has been seen with Nivolumab (or Brentuximab since I was on that before this, and let's throw in ABVD to boot since I have NEVER had my brain scanned so they would never have seen anything before, hell throw in high THC cannabis oil and acupuncture into that mix - might as well pull info on the lot of it!). Then just let me know if all this was even worth the dreaded WAITING. You would think they would have faster tests by now. If you can sequence my entire genome in like 10 days, why can't you do a test on my CSP in like three hours. That would be nice.
Sunday, January 22, 2017
I Will Always Believe...
***I wrote this before Christmas, and forgot to post it.***
With Christmas right around the corner, we have had some chaos here at home. I've been feeling a lot better, and that has made it so that our routines are changing. That on top of all the fun holiday outings and gift buying has led to some crazy schedules and a little less sleep for all of us.
Mike got called away to California last week for a conference. Lochlan and I stayed home and spent a few days and nights hanging out at my parents' house. One downside to the timing of this conference is that it happened over December 13th - the 5th anniversary of Saoirse's death. My best friend, Emily, came up to my parents' house and made cookies with me while Lochlan was still at school. We used to do that all the time when we were growing up (we met when we were 8 and were pretty inseparable after the age of about 10). It was nice to just do something mindless and fun, and of course to eat half the dough raw. Emily can always make me smile, and she knows just what I need on a day like that.
A couple days after Mike came home, Lochlan came up with a very direct question for us while we were riding in the car. He asked, "Does Saoirse sleep?" Mike and I looked at each other. Now, we know Saoirse is in the house - many times I have yelled at her for knocking Christmas ornaments off the tree, or moving something I needed. Mike also has woken up and seen her hanging out on my back (he is lucky enough to see ghosts, I however, am not that lucky). And we have always suspected Lochlan talks to her and sees her around. I told Lochlan that we didn't know if she slept, and that he should ask her. He very seriously said, "I can't ask her. She doesn't talk." This was such a hard hitting moment for me. It basically confirmed to me that he really does try and communicate with her. I told him that he should teach her to talk, and then he could ask her. He liked that idea. I'm now curious to see if he figures out a way to communicate with her.
I hope that he continues to see her and communicate with her as he grows. So many kids lose that ability, and I would love for him to keep it. I think that it is so important for him to have a connection to Saoirse, as she will likely be his only sibling. I will always continue to believe in her presence and her spirit. I hope she continues to support Lochlan with her spirit and her positivity. That is truly a gift that only she can give to him. I will always encourage him to believe and to keep his mind open to seeing her. Hopefully he will experience her all of his days. Maybe he can teach me how to see her for myself.
With Christmas right around the corner, we have had some chaos here at home. I've been feeling a lot better, and that has made it so that our routines are changing. That on top of all the fun holiday outings and gift buying has led to some crazy schedules and a little less sleep for all of us.
Mike got called away to California last week for a conference. Lochlan and I stayed home and spent a few days and nights hanging out at my parents' house. One downside to the timing of this conference is that it happened over December 13th - the 5th anniversary of Saoirse's death. My best friend, Emily, came up to my parents' house and made cookies with me while Lochlan was still at school. We used to do that all the time when we were growing up (we met when we were 8 and were pretty inseparable after the age of about 10). It was nice to just do something mindless and fun, and of course to eat half the dough raw. Emily can always make me smile, and she knows just what I need on a day like that.
A couple days after Mike came home, Lochlan came up with a very direct question for us while we were riding in the car. He asked, "Does Saoirse sleep?" Mike and I looked at each other. Now, we know Saoirse is in the house - many times I have yelled at her for knocking Christmas ornaments off the tree, or moving something I needed. Mike also has woken up and seen her hanging out on my back (he is lucky enough to see ghosts, I however, am not that lucky). And we have always suspected Lochlan talks to her and sees her around. I told Lochlan that we didn't know if she slept, and that he should ask her. He very seriously said, "I can't ask her. She doesn't talk." This was such a hard hitting moment for me. It basically confirmed to me that he really does try and communicate with her. I told him that he should teach her to talk, and then he could ask her. He liked that idea. I'm now curious to see if he figures out a way to communicate with her.
I hope that he continues to see her and communicate with her as he grows. So many kids lose that ability, and I would love for him to keep it. I think that it is so important for him to have a connection to Saoirse, as she will likely be his only sibling. I will always continue to believe in her presence and her spirit. I hope she continues to support Lochlan with her spirit and her positivity. That is truly a gift that only she can give to him. I will always encourage him to believe and to keep his mind open to seeing her. Hopefully he will experience her all of his days. Maybe he can teach me how to see her for myself.
Saturday, January 7, 2017
Peds2040 Miami
I think the only thing better than being in Miami in January is being in Miami in January for the Peds2040 conference. I was super excited to organized the Young Innovators Workshop again this year. We ended up having two days to work, and had 24 kids join us - double what we had last year. I think the most fun thing was that we had some amazing tech geniuses - Maribeth and Amy - from Georgia Tech University helping to facilitate.
This year we decided to take a targeted approach to the theme of the workshop - Game Theory, with an option to use augmented or virtual reality. Now, I am not a tech mind - I'm lucky if I can get my iMovie files to save. But after hearing what Maribeth was thinking about for the kids, I was really excited to see how everything would come together.
I had been concerned that the workshop wasn't going to come together. I had missed a lot of meetings and planning steps during the summer and fall while I was trying to regain my health. I wasn't able to solicit a big sponsor like I wanted to, and I wasn't able to promote the event on social media the way I had planned. I was sure that we were going to end up with like 3 kids at the event, with nothing to work on, and that I wasn't going to be able to make the trip. My co-leader also fell into health issues herself this summer and ended up needing to schedule surgery for right before the event so she was not able to attend or to plan the way she had planned either. It seemed like it may just all fall apart, and right before Christmas, I was sure that I was going to cancel. But as I realized that we really did have kids filling out their applications (leave it to kids to fill them out right before the December 24th deadline), and that Maribeth and Amy had prepped themselves to be able to help as much as they could, I started to feel like we may have a chance at pulling it all together in the end.
Boy was I right. We ended up with 24 participants, working in three groups, to build games that would help to solve some really challenging pediatric healthcare needs. Everyone got to participate and have their ideas heard. They were all able to come together as teams and really hash out some pretty advanced ideas, using some really creative and fun solutions. In the end we had three games that we could play together and see how kids' lives could be improved in a fun and entertaining way.
One of the things that I love about this workshop - and the reason that I wanted to do it in the first place - is that kids don't have a filter. By filter, I mean preconceived notions about what is and isn't possible. If they have an idea, they just put it out there. If it doesn't fit with the group, they come up with something else. Kids are way more flexible when it comes to working in groups, and it seems like they know exactly how to collaborate and work with others, even when their idea may not be the one that makes it to the final project. This inhibition leads to collaboration like no other - and it's something that the adults at the conference could - and SHOULD - learn a lot from.
In the end, each group presented their final projects to the other kids as well as parents and a few attendees of the conference. I put together a video of the days' events to show on the last day, but the last day is always low on attendees so it was a little like "preaching to the choir." But it's step in the right direction from last year, and the kids who attended are all really hoping that they can join us next year as well. My goal for next year is to make it so that the kids get to present their final projects to the whole conference so that everyone can see how really dedicated and creative they are, and how involving them in the innovations that iSPI is working on is the best idea to advancing the directive of the group.
I feel like I missed a lot of the conference this year, but in all honesty, I think that may have been a good thing. I was running on pure adrenaline to get through the two days of the kids workshop, and I'm not sure how I was standing at the end of it other than that. Now home, I'm tired and sore, but glad of it. I'm missing friends and thinking too hard, but glad of it. I'm formulating ideas and making plans, and for sure am glad of it! I'm feeling human again. And that in itself is all I need to be.
This year we decided to take a targeted approach to the theme of the workshop - Game Theory, with an option to use augmented or virtual reality. Now, I am not a tech mind - I'm lucky if I can get my iMovie files to save. But after hearing what Maribeth was thinking about for the kids, I was really excited to see how everything would come together.
I had been concerned that the workshop wasn't going to come together. I had missed a lot of meetings and planning steps during the summer and fall while I was trying to regain my health. I wasn't able to solicit a big sponsor like I wanted to, and I wasn't able to promote the event on social media the way I had planned. I was sure that we were going to end up with like 3 kids at the event, with nothing to work on, and that I wasn't going to be able to make the trip. My co-leader also fell into health issues herself this summer and ended up needing to schedule surgery for right before the event so she was not able to attend or to plan the way she had planned either. It seemed like it may just all fall apart, and right before Christmas, I was sure that I was going to cancel. But as I realized that we really did have kids filling out their applications (leave it to kids to fill them out right before the December 24th deadline), and that Maribeth and Amy had prepped themselves to be able to help as much as they could, I started to feel like we may have a chance at pulling it all together in the end.
Boy was I right. We ended up with 24 participants, working in three groups, to build games that would help to solve some really challenging pediatric healthcare needs. Everyone got to participate and have their ideas heard. They were all able to come together as teams and really hash out some pretty advanced ideas, using some really creative and fun solutions. In the end we had three games that we could play together and see how kids' lives could be improved in a fun and entertaining way.
One of the things that I love about this workshop - and the reason that I wanted to do it in the first place - is that kids don't have a filter. By filter, I mean preconceived notions about what is and isn't possible. If they have an idea, they just put it out there. If it doesn't fit with the group, they come up with something else. Kids are way more flexible when it comes to working in groups, and it seems like they know exactly how to collaborate and work with others, even when their idea may not be the one that makes it to the final project. This inhibition leads to collaboration like no other - and it's something that the adults at the conference could - and SHOULD - learn a lot from.
In the end, each group presented their final projects to the other kids as well as parents and a few attendees of the conference. I put together a video of the days' events to show on the last day, but the last day is always low on attendees so it was a little like "preaching to the choir." But it's step in the right direction from last year, and the kids who attended are all really hoping that they can join us next year as well. My goal for next year is to make it so that the kids get to present their final projects to the whole conference so that everyone can see how really dedicated and creative they are, and how involving them in the innovations that iSPI is working on is the best idea to advancing the directive of the group.
I feel like I missed a lot of the conference this year, but in all honesty, I think that may have been a good thing. I was running on pure adrenaline to get through the two days of the kids workshop, and I'm not sure how I was standing at the end of it other than that. Now home, I'm tired and sore, but glad of it. I'm missing friends and thinking too hard, but glad of it. I'm formulating ideas and making plans, and for sure am glad of it! I'm feeling human again. And that in itself is all I need to be.
Monday, January 2, 2017
Happy and Healthy New Year!
Happy new year to all!
Since Saoirse died I've hated New Year's Eve. I usually sit and cry most of the day. Something about the number of the year changing that makes me feel even farther from the time she was with us. It gives me the feeling of leaping forward and she will always stay in the same place.
This year I expected to be the same as always. But this year was a little different. I missed Saoirse the same way I always do, and hated the year turning in that sense. But this year, two days before we traded in '16 for '17, I got great news. My scan shows amazing improvement - EVERYTHING IS SMALLER! - and my blood work is almost back to normal - my white count is down to 10K! (It's been over 43K and was up over 12k since I got pregnant with Lochlan.) I'm feeling better and things are finally looking like they are truly moving toward health in 2017!
2016 all in all was a sucky year for me, personally. My health started fading right at the beginning, and it seemed like I was in a downward spiral for almost the whole year. There were some up moments, but for the most part those were overshadowed by the really scary moments. We did receive some help from some amazing people, and we are truly grateful for that. It helped us stay in our home and allowed me to get some of the much needed alternative therapies and medications that keep me from being stuck in bed on narcotics and managing nasty side effects from pharmaceuticals. And for that, I am definitely thankful! I am continuing to include my alternative therapies (tong Ren, acupuncture, diet, chiropractic, and cannabis oil), and will be starting art therapy soon (as will Mike). All of these currently come out of our pocket for costs. We are hoping also to continue to have Lochlan in preschool and keep our nanny. Our childcare vouchers have not come through yet, however, so we are working on seeing what the status is for those. I'm also working on additional financial assistance from foundations and the state. It's not all bad news, but we could still use some financial help from anyone who is able.
In other news, we are working to build CareAline back up. This year took a real toll on the business, which is unfortunate because we had a lot of momentum built up at the beginning of 2016. The delay of the release of our new products has caused some turmoil, and has kept us from reaching the potential we wanted to reach last year. But, thanks to a small grant from Life Is Good, we will be getting our first samples ready to be put out there and used. I'm super excited for this launch to get going. We know that we can help so many more patients with these new versions, and that is our true mission - to help as many people as we can with our products.
We are again at the amazing Peds2040 conference right now -this year in sunny MIAMI! We arrived today. Lochlan has been talking about flying on the airplane for weeks now, and asking when we are going to "Flor-i -dah" (it's so cute to hear how he pronounces it!). He was so excited today and we were excited too. Traveling takes a toll on us, but I was able to rest, and so was everyone else. We have our amazing neighbor with us and she is one of Lochlan's favorite sitters, so he is excited to spend time with her, and we are excited to have her to chase him! The kids workshop this year is going to be amazing! Two days and tons of fun. The kids are going to be working with game theory and VR to create solutions to some amazing issues that they have experienced in their own lives. I can't wait to see what they come up with for solutions and games. It should be a great time!
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