Remission...

I had my last chemo treatment on Friday. It’s hard to believe, but I’m done. Today for the first time I officially used the phrase “I had Hodgkin’s Disease.” In reality, I’ve been in remission since I had negative scans four months ago, but I felt like because I was still in treatment, it wasn’t real. Now I have no excuses; I’m officially no longer a cancer patient. It’s a little surreal actually. You would think that I would be jumping for joy, but I feel kind of like the battle is only half won. When I started treatment I knew everything would be over and done with in six months, and then we could get back to our normal life. But with the baby now going through her own treatments, our dreams of normal are still far off in the distance. For one, I still have recuperating to do, as even the last chemo comes with all the side effects, and I won’t be back to my normal self for quite some time as my body still works on healing itself. I still have no energy, and I’m not sleeping well, but hopefully my body will start to pick back up when I don’t go in to knock it down with chemicals in two weeks. I guess I just can’t wait to start feeling better; I’m ready to be done for good. Having my eyebrows back would be nice too; a face seems naked with no eyebrows.

Of course the last chemo has to be the one that causes problems. Since we had gone on our little mini vacation earlier in the week, I had skipped my doctor’s appointment and had to go in early on Friday for my pre-chemo check. Once I left there, I went up to Addison Gilbert Hospital to get started on my last “spa” day. Of course, because it’s the last one, I have to start off with port problems – no blood draw. Chris put me in all sorts of crazy positions to try and open up a channel, but to no avail (although I offered to stand on my head, which she didn’t have me do). She said most likely that there was a little fibrous flap over the end of the catheter, and put an enzyme into my port to work it’s magic and loosen it up. So after about an hour of waiting, and a couple of unsuccessful tries, blood finally started flowing, and I was able to get going. Luckily they were able to get it going, because if they had to put it through my arm, it would have added about 4 hours to the ordeal. I got some nice flowers though. My friend Emily sent me a beautiful orchid, and the research nurse, Lisa, brought up some beautiful gerbera daisies. Now I will say, it’s not cake (although, to my surprise, my craving for pumpkin bread was met in a wonderful way) but I did appreciate the flowers.

I’ve been feeling a bit out of sorts lately. I think I’m just feeling a little overwhelmed with everything going on. Even though it frees up some time every two weeks, being done with chemo is a routine change, and it’s always been hard for me to change routines. Plus, with the work we are doing on fundraising to help with bills, and the development of the products we are working on, I feel like there are not enough hours in the day to get everything done. I am glad that we have been able to get outside and do some things as a family. With the nice weather, it has been easier to get out; although, because Saoirse can’t swim, we are a bit limited on summer fun. But, there are other things to do, and she can get her feet wet, it’s just a matter of keeping the rest of her out of the water (hard to do with a 1 year old who really loves to splash). I just keep telling myself that it’s only a little while longer, and that next year, this will all be behind us and she’ll be able to swim all she wants. 

Mini Vacations and Celebrations

With everything that we have going on, a calendar of commitments that looks like we're a family of 6, we haven't had much quality do-nothing-else family time. So when my parents went away for their much needed week in the Berkshires, we were glad to see them get away, but a little bit jealous that we couldn't do the same type thing. They suggested us coming out for an overnight if Saoirse's labs were looking good, and she was feeling good, at the beginning of the week. This sounded like the perfect opportunity for a quick getaway. Of course, taking an active pediatric oncology patient out to the Berkshires takes some coordination, some research, and a lot of packing. I think we packed more medications than we did clothing! We also had to look up and see if there was a hospital with a pediatric oncology unit within an hours drive of the condo, just in case she spiked a fever (Springfield has a children's hospital with pedi oncology under 50 miles from Lee). So check, and check, now all we had to do was wait for her labs to come back monday afternoon to make sure that white counts were looking ok, and to make sure that her hemoglobin wasn't so low that she would need a transfusion right away. We got the call at about 4 in the afternoon, and although her hemoglobin was a bit low, she wasn't going to need a transfusion until Friday or so. So we went for it! It was a little nerve wracking to take her on such a long road trip when she had been having trouble with carsickness, but we coordinated it with an early afternoon nap, and she slept for almost the whole ride. The place they were staying was really nice. The condo was a 2 bedroom 2 bath unit, with a kitchen, and in a nice wooded area. It even had a pool so we could take a quick dip to cool off at night. We did some touring around, and ate some really good food. We even got to see the work of two famous artists while we were there - we went to the Norman Rockwell Museum and Studio, which was awesome, and we saw works by Dale Chihuly in a gallery in Stockbridge, which was amazing. Of course, the Norman Rockwell Museum houses his Saturday Evening Post covers, but it was even more amazing to see the original paintings that his published illustrations came from. I didn't realize how big they would be, although I'm not sure why. The detail was amazing in the paintings. The museum even had a little bit about animation and the Ice Age and Rio characters featured to show how the digital animation process works. It was neat to see that they still use so many analogue elements before converting things to digital output. Saoirse liked the short episodes that they were playing on a big screen TV. it was a good way to keep her occupied, as she wasn't very interested in looking at paintings. At least it kept her from screaming and terrorizing the gift shop for a sort period of time. The Chihuly gallery looking was more for us. I have always liked his work, and even though it's been showing at the MFA for three months now, and we're down the street when we're at Children's, we still haven't managed to get over there to see the exhibit. His work is so amazing, and they had a few large and really nice pieces that were very nice to look at. They also had some of his paintings, which I hadn't realized that he did. (On a special note, this gallery has no idea how to frame things. They have mostly glass sculpture, but the few 2 dimensional pieces were in horrible frames.) But even with horrible framing, the paintings were very cool, abstract pieces, with tons of color and movement. So awesome to see. After a refreshing nap for the baby and me (and a nice dip in the pool for everyone else), we packed ourselves up a nice picnic dinner, and went over to Jacob's Pillow for the free performance. It was great to finally see the Pillow for the first time. My sister has danced there, and my parents have been going there for performances for years, but I had never gotten to go along. The campus is amazing, so much to see and so many dance spaces. I can't wait for next summer when we can go and spend some more time there and see some more of the performances, lectures and exhibits. After a great performance, we headed home. The baby slept in the car, and stayed asleep when we put her in bed. The next day we woke up and the vacation was over. With blood work for me in the morning, and a blood transfusion for the baby in the afternoon, we were back to our "normal," crazy doctor's appointments. But at least, for just a couple days, we were able to forget (mostly) about being patients, and focus on being a family. 
This week was my last Chemo treatment! It's very exciting. The only problem with it being the last chemo, is that everyone wants to celebrate and I still have to feel crappy for 3 days. But we will be celebrating soon. Now that my treatment is over, I have some mixed emotions. I have the benefit of having already had a negative PET scan, so most likely nothing has changed, but I do still have to wait over a month to have my new scans done so that the medicines don't show up and give any false readings. So there's a little bit of waiting to get full confirmation, but again, because the last ones were all negative, the doctor is not expecting any surprises. I just can't wait until I can eat sushi! I still have some time to wait on that one, but I will be going out for some awesome raw fish as soon as I can. There's still a lot of follow up, but at least I don't have to have my energy knocked down every 2 weeks, and I can finally have every other weekend back! What ever shall I do with all my time? Maybe I'll finally get to organize the house! 

Chemo and Cameras

So after a busy week, we went into the Jimmy Fund last Tuesday for a bone marrow biopsy and to start Saoirse's next round of chemo, for which she was admitted to Children's for 4 days. This round was new drugs, so we were not sure how she was going to react to it and what kind of side effects she would experience. I think that's the hardest part of her protocol; it changes drugs often, so just when you think you have a post-chemo routine down, you have a new one to learn. This is especially hard with a one year old, because she can't tell you when she's in pain or starting to get nauseous, you just have to go with trial and error. Saoirse handled the chemo quite well. She did end up throwing up a couple of times while we were in the hospital, but she picked herself right up and kept on going. She even had a couple of really good meals, gobbling up food like it was a normal day. After 4 days in the hospital (two drugs for 3 days, and only one of them on the 4th), we went home late friday night. This chemo comes with 12 hours of hydration after the drugs are administered, which is one of the reasons that it is done inpatient (with an hour of premeds, three hours of chemo, and then the 12 hours of hydration, it's a 16 hour process in the end). She was given a lot of anti-nausea drugs during the hospital stay, and the nurses warned us that one of the drugs (cysplatin) is known for delayed onset of nausea. The nurses suggested staying on top of the nausea meds when we got home, and to be aware that it may take longer for her to get back to normal. 
Once we got home, we had quite the busy schedule planned for the next few days, which may or may not have been good for Saoirse. The fundraiser basketball tournament that our friends planned was on Saturday morning, and because Saoirse seemed to be feeling quite well, we took her down and ended up having a ball! It was so great to see how many people came out to support us. The tournament was amazing (Saoirse loved watching them play), and it was great to see family and friends that came out for the day. After the fundraiser, we went to see some friends before they moved to Arizona. I have been trying to get down to see them since April when she had her little baby boy, but with all the treatments going on, I had never gotten the chance (even though they live less than 3 miles from Children's). It was great to catch up with them before they left. On the way home, we realized that we were a bit late on one of Saoirse's anti-nausea meds, but it was too late to save the ride home. We spent the whole ride stopping every eight miles or so to sit her up and catch her vomit. The motion of the car just put her over the edge. So we managed to get home, but it was quite the stress full ride. We calmed her down, got her medication into her slowly, and let her stomach settle. Once all the meds settled in, she was back to herself and running around playing. After a couple of days keeping up with her meds, we felt like she was starting to intake more food and drink more and start to get back to normal. We are still staying on top of her meds, but she is definitely feeling more like herself I think. 
The other big events of last week included two TV spots on local news channels. Mike has been doing some media marketing of our story to try and help us bring people to some of our fundraisers, and to promote awareness for our diseases. Mike contacted most of the local news stations, and channel 5 and channel 7 both wanted to do spots about our story. It was a bit nerve racking to be interviewed for TV, but in the end it wasn't so bad. All we had to do was share what we are going through, and let them do the rest. Saoirse, of course, stole the show, being cute as ever, signing "thank you" to the camera for the channel 5 news. We eagerly awaited the newscasts, and it was otherworldly to see ourselves on TV. All the nurses came by and told us how wonderful Saoirse was, and we were amazed with the response from complete strangers. We really appreciate the support that has come pouring in since the shows aired, and are surprised that so many people offered up their support and well wishes. I think sometimes I forget how unique our situation really is, as we have become so used to what we are living, and sometimes it takes complete strangers to remind me that it's not every day that two people in the same immediate family battle cancer at the same time. 
[If you would like to see the TV interviews click the following links:
Mom, Baby Both Battling Cancer
Special Report - Danvers family battles cancer twice]

Cancer is a Full Time Job

This week has been crazy. Sometimes I feel like I'm running around like a chicken with my head cut off, and it always seems like I'm not making any progress. After a good stem cell collection with apheresis, Saoirse had Wednesday off, so we spent some time catching up with some friends. It's always nice when we can take a little bit of a relaxed day to do something nice for ourselves. I, of course, had doctors appointments in the morning, but managed to get through those without too much trouble (although I sometimes get frustrated with my oncologist because if she doesn't think the symptom is related to the chemo or the cancer, she sometimes glosses over it without any acknowledgment of  whether or not I should do anything about it). 
Thursday we went into Children's to have Saoirse injected with the radioactive marker for her MIBG scan. Sadly, when the secretary called me and told me her appointment times, they forgot to remind me that she needed to take her potassium iodide drops the day before and morning of the injection. They were able to give her a drop there, but they then had to wait a whole hour before they could give her the marker. This was totally frustrating to me, especially since 1) I had the medicine at home and could have given it to her if they reminded me, and 2) I had already been waiting there an hour since they were running late for her appointment. So, rather than getting in and out, we were there for most of the late morning and early afternoon. (Like I didn't have anything else to do with my day or anything.) 
Friday was the big day - Chemo day for me (second to last!), and scan day for Saoirse. Mike took Saoirse to Boston and she did a great job with her scans. She made it through her MIBG with only a little bit of crying at the end (when they had to hold her head still), and she slept through her CT so they didn't have to sedate her! Mike was so proud of her. She is such a great little trooper. I had my chemo, and I used the time to catch up on some crocheting, and some "work" on fundraising and such. Recently I feel like I've been spending more time on the computer, updating this and that, than I have doing things with my family. Sometimes I feel like everything blurs together and I never get any clear family time. Still, it's hard to believe that I only have to go one more time. It's become such a routine. Imagine what I'm can to do with all this extra time on Fridays!
Saturday was spent resting. These last few chemos have really knocked me down. I really have absolutely no extra energy, and chasing a now walking and adventurous baby around takes its toll very quickly. Luckily Mike and my family have been able to pick up some of my slack. The house is atrocious, and the porch is filled with random stuff, but we just have to overlook it. There are days when I think that if I could just get the house organized and put everything away, life would feel less chaotic, but I get one room done, and it isn't long before another room is a disaster (plus, I'm pretty sure that's not why my life feels chaotic right now). Someday everything will have a place and everything will be put away, but until then, we'll live with the piles of stuff and the seemingly endless, moving "office" that has taken over the house. 
Sunday - my day. Since we were originally scheduled to go into Children's for chemo on Monday (my actual birthday), we decided to do fun birthday things on Sunday. After a nice and restful morning, we went into Rockport to go swimming and to have dinner. We even tried a new restaurant (well, new to us, it's been there forever) which was really good - Ellen's Harborside. We took the baby in the water (I sealed her up with tegaderms) and she had a blast, but we got yelled at by her doctors, so I guess we won't be doing that again. (I understand the infection risk, but I promise, she was so sealed up not a drop got in!) I guess it's just wading for her from now on. Too bad it's so stinkin' hot!
After all the whooplah, and business, we were all set to be admitted on Monday for Saoirse's chemo. We went into Jimmy Fund for labs and her doctor's appointment, and then found out that not only was she not being admitted for chemo that day, but that she also had a bone marrow biopsy the next morning. Now I knew they were going to do the bone marrow biopsy, but I didn't realize they had to do it before the round of chemo, and when the schedule got changed, no one ever called us to tell us. Super frustrating, not because we went down for no reason (we would have had to go down either way), but because we lugged all sorts of stuff with us and parked in the children's garage a block away because we were sure we were going to be leaving from there. Ahh well; it meant that we got to come home and I got to have my birthday ice cream cake actually on my birthday! What a nice birthday surprise. We even got some play-with-the-neighbor-girls time in, and Saoirse always loves that (and so do they)! So now for the chemo and the never ending job of keeping a one-year-old entertained while she's attached to a pump and giant pole for 5 hours. I didn't want to sit down anyways; that would be boring. Bring it on!

Festivals and Fundraisers.

Even with the crazy schedule this week, we have managed to keep a pretty normal routine going and have some good old fashioned family fun around town. Danvers has a family festival that runs for a full week ending with the 4th of July festivities. We went to a few of these events including a concert and hot dog dinner, a street fair downtown, a ham and bean supper, and the horribles parade. It was so much fun, and Saoirse enjoyed every minute.
Saoirse has many appointments scheduled, as her progress is being evaluated between cycles 2 and 3 of her chemo. She also had her apheresis appointment to collect her stem cells to be used for her bone marrow transplant. To prepare for the procedure, we injected Saoirse with double her normal dose of her white cell boosting medicine to encourage extra white cell production. She did ok with this, although she had more bone pain and had to take pain medicine more frequently. Last Friday we went into clinic to meet with the apheresis coordinator and find out exactly what was going to happen. She explained what the procedure would be (she would be hooked up to a machine that pumps her blood out, separates out white cells, and pumps the rest back in), and what she needed to achieve in her labs so that we could start collecting. There are so many numbers involved, it's hard to remember what everything was, but they were checking her labs frequently and would let us know when she was ready for collection. After a busy holiday weekend, we found out Monday that she was ready for her collection. We were scheduled to go in Tuesday morning for an all day process. The morning would be labs, and the afternoon would be the collection. It was a long day, but we managed to get through it. My mum and I battled to keep Saoirse entertained as she had to be hooked up to a very large machine for four and a half hours in the afternoon. This is the biggest challenge of the process. A one year old doesn't understand that she has to stay in bed because she's connected to a machine. She just understands that she's bored and wants to go somewhere else. It took a lot of books and toys and some singing, but we managed to keep her entertained for most of the afternoon. They were even able to collect enough cells in that one session, so we didn't have to go back for a second round. This was great, as I wasn't sure what we were going to do to entertain her on a second day. 
Friday Saoirse is going to be scanned again to see what the progress looks like inside. We know her tumors have been shrinking, as she has much less swelling and her belly is not as distended, but we won't know exactly how much has improved until we see what's going on on the inside. It's a little nerve racking waiting for the results, but the wait will be worth it. I will keep you all posted with the results of all Saoirse's tests, and with her progress. 
Next Monday we will be her next round of chemo. This cycle has to be inpatient as they have to monitor how she responds to the new drugs. Luckily, it is only a 3 day cycle. Hopefully she will respond well and we won't have to stay later into the week. It would be nice if she could come home right away so we can do some more fun summery things. 
In addition to the doctor appointments, we have a full social schedule as well. Last week we spent a lot of time at festivals, and family and friend's barbecues. This week we have play dates, a birthday party, and my birthday to celebrate. Next week we have a going away party for some friends, and a second fundraiser event that my best friend has coordinated for us. The first annual HOOPS TO HELP charity basketball tournament and picnic is being held in Arlington, MA and will be a day of great fun. We really appreciate all the help and the love that we are receiving from friends, family and even perfect strangers. It's amazing the outpouring of support we have experienced. We are truly in awe. (For more info on the event look here: https://www.facebook.com/event.php?eid=234708189889959)
We have also set up a donation page for our family through FirstGiving and the Ishan Gala Foundation. This page will accept credit card donations of any size, and since it is through a not for profit organization, is completely tax deductible. The money is collected by the foundation, and we are reimbursed for living and medical expenses while Saoirse is going through treatment. The Gala foundation has been truly wonderful with us, awarding us a $1000 dollar grant to help with our expenses. This site will also help to help us with the increasing cost of Saoirse's treatments. To see our page, look here: http://www.firstgiving.com/fundraiser/saoirsefitzgerald/saoirsefitzgeraldsfundraisingpage. 
On my side of the fence, things are going well. I have two more treatments to go, and am very excited to be finishing up this chapter of my disease. Right after my last treatment, on July 22nd, I will be rescanned to make sure that the cancer is gone. It will be tense waiting for the test results, but I should not have to wait long, as I will be rescanned around the 25th, and will be receiving the results on the 27th. I'm sure it will be a long few days though. Hopefully I'll find something to keep me busy. The thing I'm looking forward to the most? - a celebratory sushi dinner! I can't wait!