Saturday, June 25, 2011

A Great End to a Long Week

After a long week of chemo, things are going back to normal. Saoirse is as happy as ever, playing and laughing and walking more and more. My treatment went well, and other than being tired, I'm feeling pretty good. The next couple of weeks are a bit crazy. Saoirse is being prepped for her stem cell harvest, so she's getting double her white cell boosting medicine. I'm hoping it doesn't cause her too much extra bone pain, but that's what we have to look out  for. Next Friday she will have an evaluation by someone from the collection team, and then she will have the harvest one or two days after the 4th of July. The only thing I think that will be a challenge for her harvest is keeping her confined to a crib for hours while keeping her entertained. It may take some creative planning and a lot of dancing and singing, but I'm sure we'll get it done. After her collection she has more scans to see how her tumors are shrinking and another bone marrow biopsy to see if there is any change. It will be nice to see how much improvement there is inside to compare to what we're seeing outside. The doctors are really happy with her appearance, so we're hoping that transfers to what we see on the scans. It's hard to wait for all the results, but there's nothing we can do about that. 
In other news, I'm still in an awful battle with the pharmacy that supplies our white cell medicine. I haven't been able to get my prescription correctly yet from them, and currently they are denying that they owe me the rest of my medicine from the last shipment. Currently I'm pretty sure that they took information from Saoirse's file and transposed it onto mine, making it so that I can't get my medicine on time. I've been trying for weeks now to get it straightened out, but they are refusing to admit that they made an error and are blaming my doctor's office for the mistake (I have talked to my doctors office who say that none of their paperwork shows the "21" day cycle note that curascript says it has on the original prescription). I'm pretty sure that Curascript called Saoirse's doctors to find out a cycle duration by mistake and fouled up my whole account. I just want my 5 vials of medicine without paying for them again! I just can't believe how many time's I've had to call and talk to these people. Their customer service is horrible. I just hope I can get it figured out by the time I need my meds. I just don't need the extra frustration right now. 
Hopefully the weather will start getting nice again this week so we can do some fun things outside. It's so much fun to see her explore the world outside. I think it helps when she spends as much time outside when she can, since she'll be cooped up inside for many of her treatments and tests. She loves the outside, so I want her to be able to get out there as much as possible. 

Monday, June 20, 2011

Happy Times

It's been a while since my last post, but that's because we've been having so much darn fun. Now that the weather is nicer, we have been spending a lot of time outside. Saoirse really loves her swing, and she has gotten used to the grass. She even picks "flowers" when she's walking around the yard and give them to me. We have done some fun things with friends - park days, sprinkler days, birthday parties and good old fashioned play dates. It's been great to see her playing with other babies. When there are a lot of people, she's still not sure of herself completely and tends to hang by me, but with two or three babies she's perfectly content (as long as I'm in eye shot). It's nice that they play more on their own too, because it means us moms can get in some much needed adult chatting (you can only discuss what sounds animals make so many times before you start thinking you're a monkey). Saoirse even started walking on her own!!! We've been trying to get her to take some steps on her own for weeks now, but she wouldn't budge without holding on. But the other day, we just plopped her in the middle of my parents' living room, Mike demonstrated nicely, and she started moving those feet. She was quite proud of herself; she clapped. It was so exciting, and I managed to get it on video! Today she's been practicing a lot. She's starting to really get the hang of it. We're probably going to have a runner on our hands in no time at all. 
Saoirse had her first of five days of chemo today. The doctors think she's doing great. The only tough thing about chemo at the clinic is that she wants to run around and play. It's hard to keep her corralled in her crib and entertain her when she just wants to be up and moving. A squirmy one year old is even harder to keep on your lap. She did great though. She played, and ate, and even took a nap. Tomorrow should be a much shorter day because we don't have to have a dressing change and doctor evaluations. We just have to go in, do vitals and start up the premeds. I'm hoping to be out of there soon after lunch time. So far I'm liking having it done as an outpatient. It's nicer than having to be stuck in the hospital. She even got to play out side and go for a ride in the stroller when we got home. Too bad this may be the last time we are able to do this (it will depend on how she reacts to some of the other drugs). After this cycle, we will be doing lots of trips for other things. Saoirse will be having her stem cells harvested, which means a couple trips to Children's and the art of keeping her entertained when she has to be sitting "still." She is also having her scans redone, so hopefully we will be able to see the improvement on the inside that we're seeing on the outside. I'm really looking forward to finding out the results and seeing how the doctors think she's doing. She seems like she's doing so well - she's back to looking like herself, and more importantly acting like herself. I have my happy go lucky, friendly, giggling baby back, and I'm loving it! 
In other news, in an effort to make my life easier, I decided to get an iPhone. This has, so far, only caused me distress as I have to try and update my computer so that I can actually use it as intended and sync it with the files on my computer. The updating process has become a total hassle as I have to find an outdated software, try and back up my computer to drives that are dying, and ended up having a panic attack that I was going to loose all of our photos of the baby and our wedding and everything else before that to a dead drive that was simply a problem with the power in our house (we have really old wiring everywhere except the baby's room. That was our savior yesterday, as I sat on her floor and loaded files onto a new drive). I'm hoping that once all the ridiculous updating is done, I will finally be able to use this tool as I intended to, and hopefully it will be worth the hassle. Sometimes I hate technology. 

Thursday, June 9, 2011

A busy and fabulous week

This week has been a great one. Saoirse has been really doing well. She is walking all over the place (still with help, she won't take a step without holding yet, but she's close). She's loving the outdoors, and loving socializing with other babies and kids. She's been so happy, and we are loving hearing her laugh every day, all day! Now that she's feeling better, we are going on more play dates, and she is really starting to socialize rather than just sit. She's also really starting to communicate with us which is so much fun. When she gets going she tells the most "interesting" stories, babbling on like we know exactly what she's talking about. But when she wants something she's now starting to point, nod, and sometimes sign. Also, she recognizes things when you ask or tell her something. And she is loving music! When we were at clinic on monday they gave her a little birthday gift - a music set including a drum and drumsticks, bells, tambourine, and rattle. She loves it! she shakes and bangs and dances along. The dancing is so fun, and whenever we put music on she bounces along and "conducts" the music with her arms. 

One thing I did for myself this week was to put some art in a local show. The Essex County Greenbelt Association holds an annual art show and sale called Art in the Barn. Last year I managed to show, even though I didn't attend because I had just had the baby. This year, with everything going on, I was not very on top of my submissions, and I considered dropping out. However, I forced myself to get things together and to drop off my artwork (even though it got there a day late). Mike and I left Saoirse with the neighbors tonight so we could go to the opening (the girls were very excited to have Saoirse as a playmate for the evening). Not only was it nice to get out and see some wonderful artwork, but I felt like I was doing something that was just for me, and getting back into the art world a little bit. I even saw an old friend from the frame shop there and was able to catch up with her a bit. (We saw a fellow MacFarlane clan member too, clad in his kilt and sporen.) For anyone interested in viewing the show (which I highly recommend, and it's free!), it is held at the Cox Reservation, 82 Eastern Ave. in Essex,  MA (Rt 133, right behind Farnham's clams - which I would recommend for lunch/dinner when you go). The art is amazing, and the site is beautiful. A wonderful afternoon. (For viewing hours, visit

Saturday, June 4, 2011

Oh the Pain

This week has had it's ups and downs, but over all it's been pretty good with just 3 exceptions. 

The first had to do with some missed prescriptions. When I had my labs drawn last week, my ANC had dropped below 100. At this low level, my protocol would allow me (and suggest) that I go on Neupogen injections to raise my white cell count. This was fine, and I was prepared to have Mike or myself give me a shot for 6 days to bring up my counts. The first problem came because I was due to start on Monday, which was Memorial day, and therefor the oncology staff wasn't going to be there. This meant I had to go to Beverly Hospital to a regular patient floor and have a nurse there give me the first injection (the first one they observe you for an allergic reaction). This was frustrating for two reasons - 1: I had to drive to Beverly that morning and sit there when I could have been doing other things at the house while the baby was still at Children's. And 2: you never know what people have on a patient floor, so I had to be careful not to touch anything and wear a mask (which I just find annoying). But it was fine, and I got my shot, and no reactions, so I went on my way to pick up my prescriptions at CVS. Now, in reality, I should have known that I was going to have an issue because when we got Neupogen for the baby the people at Children's told us that Blue Cross only paid for it when it was mail ordered from a certain company in Florida. However, I didn't make the connection, and expected to pick it up at CVS along with the antibiotic that I was prescribed. Not only did they not have anything in the system, but since it was a holiday it took forever to try and get the prescriptions from the doctor on call (who wasn't my doctor). So after a lot of phone calls, and some searching, I was told it would be $300 to get one dose from CVS because BCBS doesn't cover it except for mail order (this is where the duh part came in). So now I'm screwed, and I have to drive into Boston to stay there overnight with Saoirse, and have no way to get my injection. So, I found out my dose and took a vile and syringe of the baby's from the house, and had it with me for Tuesday morning at the hospital. After calling the doctor's office in the morning and trying to get them to set everything up for me, I had the nurse at Children's inject me. So I was hoping I would have my meds delivered on Wednesday morning, because the doctor said the order was put in on Tuesday and I know the company overnights, but I called them and they said the order hadn't gone through yet and they were waiting for approval from the insurance. To make a long and frustrating story short, I spent all day making phone calls to them and the insurance company, only to find out that it took all day for them to process it, and that I would not get it until Friday morning. Needless to say, I'd now taken 3 of the baby's vials, and was so frustrated I couldn't talk about it any more. I did finally get the meds, but they ordered me pre-filled syringes which cost me more than if they had ordered me vials, and means that I can't replace the ones I used of Saoirse's so I have to order more for her now. Just a hugely frustrating ordeal that I didn't need to have with everything that's going on. For the next round I'll be sure that I get the right thing on time. 

Frustration number two: the mysterious rash. Saoirse has her new Broviac central line, and they changed the dressing before we left the hospital. However, she managed to develop a bit of a rash around the dressing by wednesday night. We talked to the Jimmy fund, and they recommended getting some Benadryl and seeing if the rash improved before bringing her in (we suspect she's having an allergic reaction to either the dressing tegaderm itself, or the cleaning solution used at the dressing change). During the day on Thursday, she had managed to pull off half of the tegaderm, and now the dressing needed to be changed again so she didn't get an infection. So I had to call the visiting nurse to squeeze us in on Friday morning, go to CVS and buy children's Benadryl, then call the clinic to find out the dose because for children under 4 they tell you not to use it. Needless to say, it was a crazy morning of phone calls and nurses and crying and confusion. But the rash is going away, and her dressing is staying in place, and that's better. 

Now for the big one. So my parents took Saoirse overnight Friday so that we could get a much needed night of uninterrupted sleep. Everything was going great. We dropped her off, she was playing and having fun, we left, went to dinner, came home and planned on going to bed early. I was a bit achy at dinner and remembered that Neupogen can cause some bone pain when it starts to activate the white cell production. I figured I'd take a nice hot bath to sooth the achyness, and then go to bed feeling better. The bath helped, and I was fine going to bed. At 2 am all hell broke loose. I woke up in excruciating pain, and couldn't even move. My pelvis was throbbing, and I couldn't find a position that didn't put pressure on the bones. I had Mike running all over the house finding Tylenol and heating pads and helping me up and down. It was horrible. The pain was worse than when I had my C-section. It felt like my bone marrow biopsy, except instead of one second of the pain, it was constant. It was horrible. I managed to go in and out of sleep until about 5:30 when I just couldn't take it any more. At 6 we called the doctor's office, and had Dr. Bering paged. I explained to her what was going on and she said it should pass in three days or so, and that I could take Vicoden or Oxycodone if Tylenol and Advil didn't work. I never have Advil so I asked if I could try Ibuprofen first, and she said that I could because my platelets have always been fine. I took 2 pills and within 20 minutes the pain was going away and I was able to go to sleep for a bit. So much for an uninterrupted night of sleep. She'll just have to go to Grammy and Grampa camp again another night. I never thought I could be in so much pain, but at least now I know what to expect. At least my parents got a good night's sleep (the baby slept pretty much right on through after she was woken up by my mum at midnight). 

As frustrating and annoying as these three things were, the week was really a great week. Saoirse is feeling great, and loving playing and running around the yard. She loves her swing, and she loves gardening with Mike. It's so nice to see her getting back to normal and learning so many new things. I just watch with wonder every day as she figures out something new. She's very close to walking, and I'm sure within the next week or two we are going to be chasing her around the house and the yard, running along behind her every step. 

Wednesday, June 1, 2011

A First Birthday Celebration!

One year ago today, my beautiful daughter came into the world. Saoirse - which means freedom in Gaelic - decided she wanted into the world quickly and painlessly by showing up butt first! I guess from day one she has been changing our well laid plans. The past year has been full of firsts, new experiences, tears, laughter, joy, sadness and overall love. Pretty much nothing has gone as planned, but I think it has taught us to roll with the punches and take each day as it comes. There have been many unexpecteds, both positive and negative, but overall we have had a year of incredible love and lots of happiness. Right now we are looking forward to healing and loving more than ever, and we are well on our way.