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Update, The Final Stretch

27 Mar

To begin, I want to say that I really appreciate everyone’s patience with my lack of posts. It’s been an extremely busy last couple of months.The last time I found the time to post was Winter Break back in December and now it’s Spring Break, which I hope speaks to how busy I’ve been.

Right now I’m away with my Grandmother, and we’re having an amazing time. Even when I’m not away and just in school I’m constantly reminded of how lucky and blessed I am. I’m blessed to have treatment that’s going very well, I’m blessed to have an amazing family, support network and education and I’m also blessed to have people following my story.

In the past couple of months my treatment has been mostly uneventful. I’ve now completed thirty-three of my forty-one treatments, which means I only have eight treatments left. I’d like to think that I’m now in the final stretch! Most of my treatments have gone very smoothly. Normally, I have my infusion of Vincristine and Carboplatin on Thursday afternoons. I normally feel pretty sick afterwards but then I’m able to bounce back and feel okay by the end of the weekend. Lucky I’m still able to go to my classes on Fridays.

One of the few “eventful” moments happened back in mid-January. I had returned from vacation with my family and was back in DC. I was in the middle of exams and studying like crazy. One morning I woke up and within an hour or so had a very strong migraine. I had just recently had an MRI and the migraine couldn’t help but make my mom and I suspicious that the pressure in my head had finally become an issue. We called the hospital and they look at the MRI. The MRI didn’t show increased swelling. Instead, they assumed that the rigorous study and particularly time spent in front of screens is what caused the migraine. My doctors then stressed the importance of letting one’s eyes rest to prevent eye strain, which is what I was going through.

The only other “eventful” moment was during my most recent set (meaning a group of four weekly infusions) when during my first infusion I “bounced back” much less effectively than expected. Normally during my first infusion after a two week break I react normally if not somewhat better than after other infusions. This was a little concerning. However, after talking with my doctors it just seemed to be a strange outlier. The following week I reacted totally normally.

In the next few weeks I have my next MRI and then I’ll be meeting with my entire team which includes the neurologist and the neuro-ophthalmologist. This means an entire day spent at the hospital. We’re hoping for good results. I’ll hopefully find time to post and fill you all in on the results.

Again, I want to thank everyone who’s following my journey. Your support and well as your patience has been incredible.

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A Lot To Be Grateful For!

24 Dec

Well, right now I am in Australia, celebrating the holidays with my extended family, and I think it’s safe to say that I have a lot to be thankful for. Since my last update, I’ve completed another four rounds of chemo. One of the things that I’m thankful for is that my treatment continues to be smooth sailing; my counts have steadily stayed high, no signs of growth or swelling and remarkable recovery times after infusions. This means that in total I’ve now completed twenty-five of my forty-one infusions. Because of my trip to Australia I did one treatment two days early (moved from my normal Thursday to a Tuesday) and actually skipped one round of chemo. Interestingly enough my doctors felt as though skipping one treatment out of an originally planned forty-two wasn’t a big deal; especially considering that my treatment has been so successful. I think there’s something to be said about the fact that I don’t really have much to talk about in terms of my treatment. It’s been so uneventful and “regular” that to write everything out again would just be repeating myself. I now have roughly a month off before my next MRI and then hopefully starting my next maintenance round. Due to the uneventfulness, I’ve decided instead to talk about some of the things I’m grateful for.

I’m grateful that my Grandfather’s chemo has been so successful. My Grandfather is fighting T-Cell Lymphoma and after having a few unsuccessful treatments he’s found the chemo that’s doing the trick! He’s quite an inspiration and together we’re the Chemo Company! Love you, Grandad! It’s a blessing to be over in Australia celebrating Christmas with my grandparents, cousins, aunt, and uncle.

I’m grateful to be so fortunate as to go to an amazing school and to live in an incredible place in an amazing city. Moving this year has been quite a change in lifestyle; not only did I change schools but I also changed cities! I went from living in a house in the suburbs to an apartment in the city. Living in DC has been quite a change but it’s a welcome change! I’ve met so many new people and made many new friends. I look forward to continually establishing myself in an amazing new place. I’m so very lucky….. except that I’m not living in Nationals territory. Go Phillies, regardless of the fact we’re kinda terrible now.

I’m grateful for an amazing set of doctors and nurses. I hope that all of my doctors and nurses know how amazing they are and that I owe them big time. I imagine that what they do everyday has many challenges by their amazing attitudes every time I walk in the hospital makes all the difference.

I’m excited to be launching The Bear/Bare Cupboard (punny, right?), my fundraising effort to fill the outpatient chemotherapy pantries at Children’s National Medical Center. I hope to establish an amazing set of donors who are willing to help make a change in a hospital that helps so many kids and families. More information to come later.

I’m grateful for everyone who is following and supporting my journey. Your support means and does more than you can imagine.

Finally, I’m thankful for my health and my family. It’s been a turbulent year, but I’m so thankful to be where I am now, not only physically but also mentally. More than anything, I’m thankful for the immense support of my family. Without them I don’t know how I would be where I am today. They’ve sculpted me into the person I am today and I am forever grateful.

I hope that you all have an amazing holidays and enjoy so much needed (at least much needed for me) time off. Again, thank you.

-Josh

 

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Half Way!

9 Nov

Hi Everyone,

I just wanted to take a quick moment to announce that this last Thursday was my twenty-first chemotherapy infusion. The original plan has always been that I’d begin my treatments with a ten-week intensive period and then have 8 sets of 4 weeks of chemo (chemo being once a week during those four weeks). This meant that in total, by the time I hopefully finished my treatments that I would have done forty-two infusions.

Well everything has been going so smoothly and this past Thursday was my twenty-first infusion. I’m half way there!

Thanks again for following my journey. I could have never expected this type of following and the tremendous support I’ve received.

-Josh

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A marathon of doctors visits at CNMC!

24 Oct

Well today was the day. Because the day turned out to be such a marathon, I’ve decided to do this post chronologically.

(9:30am) My parents and I arrived at the hospital and went straight to the oncology suite. We checked in and I was almost immediately taken back.  I’m still not sure if this is because I had a pleather of things to do and many people to see or if it was just a quiet morning. As soon as we were placed in a waiting room a nurse took all my vitals. Everything looked good. Then I was taken by another nurse to have my post accessed. Everything was running very smoothly, just one thing after another.

When I got back from having my port accessed a doctor, whom I hadn’t met before, was there to ask me a whole bunch of questions. These questions being a little more in depth than the usual infusion day. As she was doing the exam, more and more doctors started tricking in and by the time she finished the exam our little room had about ten people including the legendary, infamous, Dr. P. Business as usual, he did a few quick tests including looking back into my eyes. Then, with all the doctors ready to jump into their terminology that’s not meant to scare anyone but obviously does, I left. Even being sixteen, I’d much prefer to get the quick, simplified, sugarcoated version from my parents.

(11:00am) My parents came out of the meeting and told me we quickly had to run downstairs because we were being squeezed in to see Dr. A, a well renowned neuro-ophthalmologist. As we signed in to see the doctor my parents filled me in on the meeting. I already knew some about the MRI’s results because the doctors had called earlier in the week.

The MRI looked pretty good. The tumor has actually shrunken from the first scans and there’s an obvious change in certain parts that likely means it’s dying. The only down side was that the fluid pools that were obviously too big in my very first MRI (right before I had surgery), and had then been drained during surgery, were now starting to fill up again.

In this picture you can see the first MRI (left) from right before my surgery. In that picture the fluid pools were much too big and that's why during my surgery the surgeon opened up a place for the fluid to drain. In the MRI from back in July (right) you can see that the fluid was draining really well.

In this picture you can see the first MRI (left) from right before my surgery. In that picture the fluid pools were much too big and that’s why during my surgery the surgeon opened up a place for the fluid to drain. In the MRI from back in July (right) you can see that the fluid was draining really well.

This most recent MRI looked a little different.

This is a comparison of my MRI from July (left) and my MRI from Sunday (right). As you can see, the MRI from Sunday shows the tumor has actually shrunk (2mm) and the change in coloration shows that it's dying. However, in this image you can see how the fluid pools are starting to fill up again.

This is a comparison of my MRI from July (left) and my MRI from Sunday (right). As you can see, the MRI from Sunday shows the tumor has actually shrunk (2mm) and the change in coloration shows that it’s dying. However, in this image you can see how the fluid pools are starting to fill up again.

The news the tumor has shrunk is great! It’s not as great to hear the fluid pools are filling up again, but that does happen. There are three possible treatment options for the fluid buildup. The first is to have another procedure in which the surgeon would just make another drain like they had done in my original surgery. However, my doctor’s don’t think this is the best option because there’s always the possibility the same thing (fluid buildup) will happen again. The next option is to put in a shunt. A shunt is a little device placed on my skull, under my skin. A tube is placed in the fluid pools of my head and then it runs through the shunt and down into my stomach. The idea is to take the extra fluid and relocate it. The third option is to do nothing, and evidently this is what the team, my parents, and I chose. As of right now, there’s no reason to believe that pressure and fluid is going to continue to build. The pressure might just relive itself and there would be no reason to have a shunt. We decided that we would wait until my next MRI in another three months and than see if there’s something that needs to be done.

As this whole conversation was going on we were beginning to meet with Dr. A to get my eyes checked out. Everything was pretty routine. It started with a visual acuity test and then a visual field test. Both came back really positively. Then I met with Dr. A who looked into the back of my eyes before giving me dilating  drops.

When he came back twenty minutes later he looked into my eyes again and than I went to do some more tests. The first of those tests wasn’t even a test. It was an image to look at the retinal nerve in my eye. With the dilating drops they were able to take images that were the size of 200µm, which is equal to 0.00002 of a centimeter.

My retinal nerve. The length of this image is 0.00002 centimeters

My retinal nerve. The length of this image is 0.00002 centimeters

 

Here you can see the doctor taking the photos of my eyes and the retinal nerve.

Here you can see the doctor taking the photos of my eyes and the retinal nerve.

Dr. A thought my eyes looked great. However, there was some retinal swelling he wasn’t sure about. He said that honestly it could be nothing. Just incase, I’m going to see him again in two months.

(1:00pm) Next, we arrived back at the oncology suite where I almost immediately began my premeds and infusions. One of my favorite doctors, Dr. R, came to talk with my dad and I. Basically, he reinforced the idea that it’s important to keep an eye out for things like headaches, vomiting and fatigue because those are all signs of increased signs of pressure. The whole point of monitoring the pressure is to protect my eyes and brain but to also see if I need a shunt. He asked me to keep a journal of when I have headaches, which I’ll definitely be doing.  Dr. R also referred us to the neuro-surgery team just so that we could hear a little more from them about the logistics of the procedure and so that if something does need to be done then we have a connection.

Afterwards, I did my normal infusions. Like always, the Ativan put me straight to sleep and when I woke up everything was done.

(4:00pm) Arrive back home! What a long day!

 

Thanks to everyone following my journey. If you have any questions, please let me know.

-Josh

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Chemotherapy Rounds 14 through 18….. The joys of school and chemo!

13 Oct

When I told people I was expecting my new school to be very busy and chaotic… I was never expecting it to be like this! I apologize for not posting for a few weeks. I’ve been looking for the opportunity to update everyone on my journey for a while now and it wasn’t until this long weekend that I found that opportunity.

I began school on September 3rd, and began chemo again on the 12th. The really good news is that my chemotherapy has been very uneventful! As I said in my last post, the biggest differences between chemo in DC and Philadelphia is that in DC I see three doctors each time I go in for an infusion and that my Vancristine is done through a push instead of a drip. Otherwise the process is almost exactly the same.

I love my new doctors and nurses in DC. They’re very friendly and obviously really know what they’re doing. One thing that I noticed that’s a little different between DC and Philly is that things are a little cleaner in Philly. Also, things like pantries and activities for kids who are doing infusions are much less well stocked in DC. Frankly, often the pantries and activities for kids in DC are just empty, which I find somewhat sad because I have a laptop but little kids often have much less to do. I’m thinking about starting a drive at my new school to collect snacks and activities for young kids.

The biggest difference in my recents treatments has been doing chemo while going to school. School and chemo together have actually been very manageable. My school was amazing and set up my schedule so that my Thursdays have a very light work load and I don’t miss any classes for treatment. Friday mornings are also light meaning I can sleep in rest before going into school for the afternoon. My new school never sleeps, which at times can be exciting and at other times its really exhausting. On Tuesdays I don’t get home until 8pm because of debate. I’m really loving debate as an activity (I’ve never done it before). On Wednesdays I don’t get home until around 9:15pm because of choir. As I said the school never sleeps; I’m sure there are kids who are at school that late every night of the week.

My next MRI is on the 20th and then I’ll start treatment again on the 26th. On the 26th my parents and I will be meeting with the infamous Dr. P again so review my MRI… so that’ll be interesting.

I hope I get the opportunity to update the blog more regularly than I have over the past six weeks, however I can’t make any promises. As always if you have any questions or things in particular you’d like to to talk about, please just let me know . Thanks again for following my journey. I really appreciate the amazing outpouring of support and sympathy.

-Josh

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Maintenance Round 1 Complete; Sad Day

23 Aug

Well today was my last round of chemo in my first maintenance cycle. In a lot of ways this week way just like last week. However, there were some key differences. When the nurse was accessing my port it was so much less painful than it been any other week. Every week it becomes easier and less painful to access which is really helping to make the process easy and smooth. Another difference between last week’s treatment and today’s treatment is that instead of receiving Vancristine and Carboplatin (the usual cocktail), I only received Carboplatin. Apparently during the maintenance cycles the first three weeks are Vancristine and Carboplatin and then the final week is just Carboplatin. This made the the entire transfusion about a half hour shorter. Also, we went over my opthalmology results and just like the doctors from the suite, my oncologist was shocked with the results. Besides for these three differences, this week and last week was almost exactly the same!

Except……. for the fact that this was my last transfusion at CHOP. Some of you know and others don’t that I am moving to Washington DC in a few days. It was sad saying goodbye to all the amazing people at CHOP, especially my oncologist Dr. B. Over the next few days I’ll be moving down and then meeting with my new doctors at National Children’s Hospital in DC. I have a meet and greet with Dr. P who’s the head neuro-oncologist down at National Children’s and then with members of the oncology team on Tuesday. After that I’ll be able to enjoy the rest of my two weeks off before beginning my second maintenance cycle down in DC.

From what I’ve heard, the process is much different down in DC. Apparently I only meet with the head neuro-oncologist once a cycle (six weeks). Otherwise my exam is done by the nurse-practitioner. I’m not exactly positive regarding how some of the other aspects of my treatment will be different. I know that instead of doing the Vancristine in a 10-15 minute drip like they do at CHOP, National Children’s administers the Vancristine in a 5 minute push. I’ll let you know about some more of the differences on Tuesday.

As for today when I met with my current, incredible oncologist, Dr. B, we talked about the transition and keeping in touch. My dad and I brought he a gift as a thank you. It’s amazing how one person and her team can make something like going through chemotherapy feel so comfortable and easy. Not only was the process easy but over time I learned how to laugh about my situation and just make the best of it. We probably laughed more than you should in an oncology suite. Oh well.  I am going to miss the CHOP oncology team and their kindness, understanding, humor and all around passion for what they do every day.

Dr. B and I during out last exam.

Dr. B and I during out last exam.

Hopefully, the oncology team down in DC is as welcoming, friendly, and humorous. I will definitely miss CHOP and it’s caring people.

Thanks for following my journey. Let me know if you have any questions or anything you’d like to hear about.

-Josh

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Maintenance Period 1; Weeks 2 and 3

17 Aug

Hello again everyone. I apologize for not posting last week. I was feeling pretty beat after chemo and never got around to posting. I decided I’d just give a brief overview of the previous week in this posting.

July 8th, Round 2

Everything started normal for week two. I arrived at the day hospital and the place was almost deserted. I don’t know if I’ve even seen it that quite. My dad and I have discovered that if you arrive a half an hour early, you have a much stronger chance of being one of the first people treated. As soon as we checked in I took my registration over to triage where they immediately took my vitals. As soon as they finished taken my vitals I was called into a neighboring room to have my port accessed. I was nervous because it was my first time having the port accessed.

It’s a much different process having a port accessed than getting an IV. When you get an IV, they simply clean the sight where the incision will be and then insert the IV. When having a port accessed I had to wear a face mask and the nurse had to clean the area of the port for thirty seconds before she inserted the needle. Apparently needles for ports come in three different sizes: three-fourths of an inch, an inch, and an inch and a half. Because it was my very first time having a port accessed, they used the three-fourths inch needle. There was still quite a bit of swelling around the port because it was still just a week old. It took the nurse a minute or so to pierce the port. Once she did access the port she took blood for my weekly tests. The line was pretty sluggish getting blood return but it worked just fine.

Almost immediately after the nurse finished accessing my port we were called back to meet with my oncologist. It was definitely looking as though arriving just a half hour early makes a huge difference. The meeting went very smoothly. All my medications and chemotherapies were going to be the same a the week before. After a quick and easy exam from my oncologist we headed back to the day hospital to start my chemo. We were making record time!

Back in the day hospital I quickly began my regiment of medications. Like the previous week I had to take Benadryl. Unfortunately it had a similar effect as the previous week and I was all jumpy. Once again I felt as though I wanted to crawl out of my skin. Once the reaction finally wore off I fell asleep. Because the line was so groggy it took my chemo regiment four hours to finish! Normally my regiment only takes around two hours. Still the four hours passed and I was finished my regiment for the week.  In the grand scheme of things, it was a pretty normal week of treatment.

July 15th, Round 3

Like the previous week we decided to arrive at the hospital a half hour early hoping to beat the rush. When we arrived the hospital was packed! It was one of the busiest mornings I think I’ve ever seen. I turned in my papers to triage, but the place was overflowing with people! After waiting for about twenty minutes (longer then we’d normally wait to go back to triage) one of the nurses came out into the waiting area to get me. She told me that because triage was so packed, she was going to access my port before triage. We went back to a different part of the hospital where I went though the same port accessing routine that I described in the previous week. It was a little less painful this week because the swelling had come down a considerable amount. However, this time the nurse used an inch long needle. You could tell as soon as she used the longer needle that everything was flowing much more easily and that the chemo would be much less difficult going through the line.

After my port was accessed I went back to the waiting room. However, it was then only a few minutes before I was called back to triage. It look as though things had lightened up. As I was going though triage one of the nurses told me to grab my dad as soon as I was done and to go back and meet with my oncologist. This was really surprising because the hospital was packed! Regardless, we weren’t complaining.

When we met with my oncologist things were very routine. My oncologist had a visiting medical student from Austria with her who was extremely nice and interesting to meet. There was one big item on our agenda though: Benadryl. The stuff had made me kinda crazy the previous two weeks and I was really hoping we’d be able to come up with a solution. As soon as we brought it up with my oncologist, she decided that it was unnecessary. I couldn’t have been any happier about this. In my mind no Benadryl is good Benadryl.

After a quick exam I was taken back to the day hospital where I began my treatment. The one inch needle was obviously the way to go because the chemo was moving at it’s regular speed. While I was in the day hospital we met a family with a little four month old baby who has a tumor right behind is eye. I had met them once before. However, this time they gave us the news that the tumor had almost totally calcified! This was amazing news. The family is from Utah and it really put how lucky I am to be living in Philadelphia into perspective. I live near one of the best children’s hospitals in the world and people travel from all around the world to be treated at CHOP. The whole experience has made me feel so blessed.

Thank you for following my journey. I’ll do a better job posting after each week’s treatment.

-Josh

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Surgery and return to the day hospital

4 Aug

Wednesday was the big day; the day that I had my port put in. At first I was very nervous about the operation but it quickly became obvious that the procedure is very routine and that there’s not a lot to be worried about. At 7:30 AM my Dad and I checked in with interventional radiology. Very quickly we were taken back to the sedation unit of the interventional radiology suite. Just like with chemo I began the process with a nurse taking my vitals. Afterwards the nurse took me back to my own simple room where I had to wipe myself down before changing into scrubs. Finally, the nurses gave me an IV. Luckily they were able to insert the IV at my elbow. I doubt they would’ve been able to find a vein anywhere else! Finally after I was finished being physically prepped for surgery, the nurse practitioner came back to go through her final checklist. She mostly went over preexisting conditions. Luckily, besides a brain tumor of course, I don’t have any preexisting conditions so my dad signed off on the surgery and I was given the green light.

I was supposed to go into surgery at 9:30. However, the surgeon was busy so I didn’t end up going into surgery until around 10:30. Before I was wheeled back to the OR one of the doctors came back to talk to my dad and I about some of the after effects of the surgery and the deep sedation. Finally two nurses wheeled me back to the OR. Due to the fact that the surgeon was running a little late, I was waiting and talking with the nurses back in the OR for about twenty minutes before the operation started. They were extremely friendly and it was very comforting to see how relaxed they were. More than anything they gave off the impression that they’ve placed tons of ports and that I’m really not that special.

The next thing I knew I woke up in the same room where the day had started. My dad was sitting there with me and in the grand scheme of things, I didn’t feel that bad. It took me awhile before I was ready to stand up and walk. However, once I did get up I was almost immediately given permission to leave the hospital. The nurses insisted that I rode down to the parking garage with my dad in a wheelchair, however, after that I was on my own again.

The port itself hasn’t been too bad. It was definitely uncomfortable the first couple of days, but now I’m starting to get used to it. It’s been tough not being able to take a real shower, and the site of the incision has been a little itchy as it heals but that’s about it!

The port really did help makes things easy the following day when I stated my maintenance period chemo treatments. Like always the nurses started by taking my vitals. Afterwards I was called back to the room where the nurses would normally put in my IV. This time all they had to do was draw blood. This was literally painless because the surgeon left a line into the port the day before when I had my surgery. This meant that the nurses didn’t even have to access the port to draw blood.

Eventually I was sent back to the waiting room and I began bracing myself for the normal prolonged wait. However, it was only about thirty minutes before I was called back to see my oncologist! Record time! The meeting was very regular. We basically went over some of the restrictions that go along with the first week of having a port. Afterwards I was taking back to the day hospital to begin my treatment.

The nurses decided to start my treatment with Benadryl and a precaution to a small reaction I had in the tenth week of my intensive. One thing that I had heard before about Benadryl is that it either puts you straight to sleep or makes you very agitated. The last time I had Benadryl it made me sleepy. However, unfortunately this time it made me very agitated.  It was hard to stay still and I felt like I wanted to jump out of my skin. Luckily after about twenty minutes the Ativan kicked in and I fell asleep again.

When I next woke up, my chemo regiment was all finished for the day. The only thing that was left to do was for the nurse to take the needle out of my port. This was pretty painful. However, she reassured me that the port was extra sensitive because it was brand new and that the following week shouldn’t be nearly as bad. My dad and I packed up our stuff and made our way home. Over the days that followed my treatment I was feeling pretty sick. I can’t help but think that having a brand new port had something to do with it. Luckily that’s all passed now and I can enjoy the next few days before my next round of treatment. Right now I am on my way down to DC to set up my room before I make the move permanently later this month.

As always, thank you for following my journey. If you have any questions or anything you’d like to know, please don’t hesitate to ask.

-Josh

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Back to the Hospital!

31 Jul

Well it’s been great to say that I haven’t had a lot to post about of the past few days. My family was able to take a much needed vacation in beautiful Kiawah Island, SC. Now that we’re home is time to get back into the chemo routine.

Tomorrow is a big day because I’m having a port put in. It became very obvious during the last couple of my treatments during the intensive period that I was going to need a port. On the very last week of the intensive, week 10, I had to receive three different IVs before they found a vein that worked! The nurses even called out as they struggled to find a vein, “thank god you’re getting a port!”

Check in tomorrow for the surgery is 7:30 AM. The surgery is done by the interventional radiologists. At first it was scary to hear that the surgery was done by interventional radiology, however, it quickly became obvious that the interventional radiologists are very skilled and the best people to put in the port. Check in to check out is supposed to be somewhere around six hours. Once I’m checked in at 7:30 they take my vitals and prep me for surgery. If everything goes to plan, I’ll go into surgery around 9:30. The surgery is expected to take around an hour and a half.

Unlike when adults have ports put in, I’m fully sedated during my surgery. However, unlike my neurosurgery they don’t use anesthesia. Instead they use deep sedation. I’m not exactly sure what the difference is. I know it means that recovery time is shorted, but I’m not sure that the other big differences are. The side effects are expected to be pretty minor. I’m expected to have some discomfort but nothing major. Also, I know that I cannot submerge the area where the port is placed for a week and I cannot do any intense physical activity. They’re going to leave a line in the port, that way when I have chemo on Thursday, the nurses can use the port.

Hopefully everything goes to plan. I’ll fill everyone in on how things went on Friday after my surgery and my first chemo of the maintenance period. Thanks again for following my journey and for all the amazing support.

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