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_-_

Cancer

There is such a bad omen around the word,Cancer. No one ever wants to hear it. No one wants to face it. When you do hear the word your whole world cause crashing down around you. No mater how strong of a person you are you will break down in tears. Claire was diagnosed on September 17th 2011. Yes, just like so many other people out there I will remember that day for the rest of my life.

I never in a million years thought this could happen to my little 10 month old daughter. She was a normal little girl, healthy as can be. She had one cold in May. That was it. No other indication that something so life threatening would happen to her.

Claire's story starts out on September 16th at around 7:00pm when my mother noticed, while changing Claire's diaper, that her right thigh was swollen. Since as it was after regular business hours I called the answering service at her pediatrician's office and waited for the call back. Claire had been moving on her leg fine but further exploration showed that when I moved it a certain way she would cry, I made mention of all these factors to the doctor when he finally called back and he suggested I should take her into Children's Hospital of Pittsburgh's emergency room. So my friend Sarah and I took her down to the ER and this is when the weekend of waiting began.

We were checked in and then were finally taken back to the triage room. Claire then had her first x-ray and we waited to hear from the doctors. The ER doctor came in to show us a copy of the X-ray and how there was a concerning massive in her right femur. We were told we were being admitted and were just waiting for a room on the floor to open up but until then we were moved to a regular room in the ER and then the IV team came to place an IV in Claire's little arm. The next day was the day before Claire turned ten months old and was filled with multiple tests including a full body MRI and a soft tissue biopsy.

That day we had the attending doctor of the floor we were on come in and tell us what they thought it was. Up until now everyone was thinking is was an infection of the bone. Though that is not the news this doctor had. Cancer. She has Ewing's Sarcoma cancer in her right femur is what he told us and the news hit us like a rock that would weigh heavy on our hearts forever. The next day we were finally able to speak with the oncologist whom would be taking Claire's case from then on. We were then told that yes it does look like that but they could not say for sure until the pathology report was final. That first hospital stay is now just a blur of tests. Claire had a chest CT, a full body bone scan, a echo cardiogram, bone marrow biopsy, and a central line placed. Tuesday, September 20th we started the chemotherapy and then were discharged on Wednesday. 

Claire has already under gone 10 chemotherapy treatments and surgery in which she had a free vascular graft of the fibula to the femur and femur was removed. She now has 4 more rounds of chemo and is in a spica cast for at least 4 more weeks.