Envy

I'm not typically a jealous person but lately it's all I can think about. I am envious of mothers that get to run around with their kids. I want to struggle to catch my breathe chasing Claire. I want to go swimming with my daughter. I want Claire to walk, run, skip, and jump. I want to be able to take Claire to the grocery store with me. I want Claire to play with kids her own age on a regular basis. I want so much for my little baby but there is so much I can not give her right now.

You do not plan on this happening. Cancer. No one can ever plan this and no one should. I knew this was going to be a hard road to go down but it's taking longer than planned. They did tell me from the beginning  that Claire would not stay on schedule and that chemotherapy dates can and most likely will move around. Claire was scheduled to be done in April. I guess things just start to get to you after a while. I keep rolling with the punches but after a while it knocks you down. I could never imagine this happening and I think that is really what I have been struggling with lately.

 "How did I end up here?"

 I have been asking myself this more often then not. I just do not understand why and how this happened to my daughter. Though I mostly push that thought out of my head and remind myself that it is part of god's greater plan. Hopefully, I will come out of this a stronger person than before as well as Claire but boy have we had a bumpy ride. And it's not done yet! 

Last Tuesday May 22nd Claire's counts were not high enough for her chemotherapy admission so we were sent home to wait a week. On Friday, they called me to tell me that they had to changed Claire's appointment from the 29th to the 31st. I guess I am just blaming that one on the holiday? So we will she how her counts are then. At this point Claire only has two remaining chemo treatments, there is a light at the end of the tunnel. 

_-_Courtney_-_

Photo updates.

 A girl has to have options! :)

 Having a snack and taking a few notes while waiting in clinic

 Happy girl!

 In clinic right before Claire met two of the Pittsburgh Penguins!! :)

 December 30th, 2011. Claire's spica cast right after surgery. 

Napping in the hospital

 Napping with Aunt Mallory while fighting off two blood infections in the PICU!!

Easter presents 2012!

Feeding tube.

Claire had a feeding tube placed on wednesday during her recent chemotherapy admission at the hospital. The doctors had been concerned for some time about her weight and about a month ago had brought up inserting a feeding tube. It took me a little while to get on board with it but I decided this was the best decision for Claire's well being. It is called a NG-tube and it not invasive at all. It was inserted by the nurses on the floor. The tube goes up her nose down her throat into her belly. No sedation what so ever was required for this but she was rather upset while it went in. The first time they put it in she pulled it right out. The second time was better and after some precautions that day and night she hasn't touched it much since.

It took a little used to on my part but I've come to terms with it and it is going better than expected. It is tough at home though since no one in my immediate family supports my decision much. Claire was solely breastfed since now with little food intake, hence why the doctors suggested the feeding tube. My mother thinks it is discouraging Claire's breast feeding but it is just taking a little adjusting on her part, more because of her not really knowing what a full belly feels like til now.

She had always been a good eater but ever since this ordeal started her food intake took a backseat to her breast feeding.

I could not be happier with my decision and I am glad I made it.

(Claire is not trying to "eat" or "lick" her feeding tube in the picture she was just making a funny face, lol)

Just a dream

I always hold on to some kind of hope that this is all just a really long drawn out bad dream. Claire is doing amazing don't get me wrong but aside from that there is the constant worring about her medical bills, gas for the car to take her to and from the hospitals, the tolls for when we have to make the trip to Philadelphia. it all adds up.

Recently, as in yesterday, my van that I had broke down on me. It was formerly my dad's van and when he purchased a new car the old van became mine. It is a 2003 Kia Sedona. It has over 170,000 miles and I think it has finally broken down to the point when I do not have the funds to fix it nor the will to do so.

So now I am down to borrowing my parents vehicles which I hate to do. I strive to be self efficient in the ways I am able to at this point, which isn't much. I was able to have and maintain  my own car for a while and now I can't.

I was on unemployment since I had Claire but now that has run out and I have a phone interview for SSI on the 11th. So here's hoping.

I just want to say for the record that I am not one to complain, but at this point it seems to be one thing after another and it is adding a lot of extra stress and emotions that I need to get out. So I figured I might as well give this a go, not that any one will actually read this. lol.

In other news, my best friend is marring my cousin come next year. She already purchased her gown and three of the bridesmaids, including I have as well. It is so exciting for her and helping her with the plans is really keeping my mind off of all the stress of Claire, so there's that.

Surgery

I thought I would take the time and explain in depth how Claire's surgery went.

After coming to an agreement on Children's Hospital of Philadelphia and Dr. Dormans for her surgery we waited for the chemotherapy rounds to end and we scheduled the date.

Claire's chemotherapy ended early December and after changing the day a few times the surgery was set for December 30th, 2011. We had a few final appointments 72 hours before the day. We had to meet with oncologists, have her blood typed and screen in case of the need for a transfusion, Dr. Dormans and Dr. Chang just to make sure everything was all good, and we had to get a MRA due to the need for the micro vascular repair needed. 

 I was staying with my sister on Fort Dix New Jersey and my friends Sarah and Eva with with Claire and I. In the morning we traveled out Philadelphia and arrived at the wood center and entered the 3rd floor and headed to the surgery reception, there were quite a few people there for it being 6:00AM.

We were called back to the pre-op room where Claire's father accompanied me, since there was only allowed to be two people in the room with her. While back there Claire was examined by the patient care technician, the nurse, the nurse practitioner, the anesthesiologist, a member of the orthopedics team, and Dr. Chang. They finally gave Claire her pre med for anesthesia and then carried her away for surgery at about 9:15am. The procedure didn't start until about 11:45am. Claire surgery entailed removing her cancerous femur and moving her fibula to where the femur was. This is called a Free Vascular Fibula  Graft. The removing of the femur was done in no time which was done by Dr. Dormans, but the micro vascular repair and the moving of the fibula, done by Dr. Chang, took forever.

When Dr. Dormans part finished he came out and explained everything to Claire's father and I. He said the margins looked good and everything went better than expected. Dr. Chang took until about 10:30pm to finish up and he did come out to speak with us as well. They couldn't of asked for it to go better. Claire was finally out of surgery and they were placing her cast then they moved her to the post-op room. We were not taken back to see her until she was in the ICU because she was not awake yet.

My poor little girl looked terrible. She had a modified hip spica cast one, a drain coming out of her cast, hooked up to the cardiac monitor, pulse ox, and was still receiving IV fluids. I was not allowed to pick her up because of everything she was hooked up to.

She was exhausted. She slept the whole night and the next morning I was allowed to hold her and breast fed her as well. She stayed in the ICU for 4 days following surgery and on the night of the 4th day we were moved to a regular room on the orthopedics floor. During the 4 days in ICU she was slowing taken off all the monitors and IV fluids. She was given an aspirin and zantec once a day for a month after the surgery. On the 5th day we were discharged and allowed to go home. I had my sister and her husband come get us from the hospital and we stayed at their house in New Jersey for a day just in case anything went wrong while going home.

It was a terribly long process and Claire still remains in her hip spica cast right now. Hopefully during our next trip to philly it will be removed and she will be fitted for a brace instead.

I am thankful for the entire team out in Children's Hospital of Philadelphia for saving my daughters leg. We had so many people tell us that she would not be able to keep her leg and that was not an option for me. I am more than happy with the choice I made for her surgery and just can't wait to have her cast removed!

_-_Courtney_-_