Friday, January 6, 2012
I haven't been on in a while and this is actually the first chance I've had in a LONG time to even think about getting on the computer to give anyone an update on how things have progressed with my husband, Chuck.
So much has happened since the last post and we've been put through so many different hoops and rings with what my husband has and what they think can be done. He's had so many surgeries, hospital stays, moves, and scares since we last talked.
He was at Virtua Hospital in Marlton for a while and was finally moved over to the University of Pennsylvania. He had some amazing Pulmonary Doctors from Garden State Pulmonary in Marlton who really went out of their way to help fight the insurance companies to get the care that Chuck needed. He was fortunate to have Dr. Steinberg, Dr. Salm and Dr. Eric Sztejman who had the, "You Know What's", to go against all of those who originally said that nothing could be done for him and removed the tumor that was supposed to be inoperable !!! They will never be forgotten and will never know how grateful I am to them for giving my children's Daddy a chance!!
They originally believed that Chuck had a Sarcoma lung cancer which started in his lung which is EXTREMELY rare and then moved to his lymph nodes and back. They had specialists from all over trying to get together a treatment plan and decided to biopsy the cancer that they found in his back. They then believed it could have been Large Cell Unidentifiable lung cancer.
While they were determining what it was, he had his first round of Chemo that could be used for either cancer, which was two very rarely used chemo's together called Ifosfamide and Paclitaxel.
The biopsy from his back came back soon after which was positive for a melanoma cancer which changed everything. Although the two chemos work for both cancers they want him to see their group of Melanoma specialists to start a new game plan.
They believe that he had a skin cancer at one point that came out and went
into his blood which finally made a home in his lungs, lymph nodes, and
back.
They let us know that although its a better cancer to have in regards to treatment options the prognosis is not much different than having the sarcoma cancer.
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| Taken at Univ of Penn before Chemo |
The most frustrating part of all of this is the waiting that we've had to do for anything to happen at all!! No one could seem to figure out what was going on with him and give a definitive answer about the type of cancer he has. They are still doing biopsy's on the cancer which is why I say "As of NOW"!!! I didn't want to come on and say too much because every time we were told something it would change. They removed the tumor in his lung back in November and by 30 days later he was rushed back to the hospital for bleeding and they found that the tumor in his lung had doubled in size, blocking off his airway and the blood was from the necrotic (dead) tissue in his lung was ripping off and coming out of his throat! I can't even imagine how horrible this all is to him!
I also believe that something in this world should be done for families that need to see their loved ones that are in a city hospital. Just to visit Chuck across the bridge was $5.00 in tolls, and parking ranged from $9.00-$25.00 per visit! If I went to see him right after work with the kids, I would get the kids something to eat while we were there too which was a struggle that I don't think any family in this situation should ever have to consider when making a decision about going to be with their family when they are sick!!!!
As soon as he went to the University of Penn they were able to insert a stent which would move the tumor the other way so that it didn't block off his airway until they can start a treatment to try and shrink it.
We almost felt grateful that he has a rare cancer because more doctors and specialists wanted to be involved to catch a glimpse of it first hand. We feel fortunate to have the specialists at the University of Penn involved. They are great doctors who REALLY seem to care about Chuck.
Chuck told the doctors that he was really upset and that this could be the last Christmas he had with the kids and wanted it to be special so they decided to give both kids, and me, the "BEST CHRISTMAS PRESENT EVER"!!! DADDY was home for Christmas!!! We really saw the true meaning of Christmas this year! It wasn't about presents it was about family and cherishing every second we had together!
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| Daddy with Charlie & Lucas a month before we found out he was sick |
Everyday when I look at Lucas, talking more and more, having conversations with me and crying to go see his daddy when he's in the hospital, assures me that miracles DO happen!! Lucas had the same prayers from all of you and I believe that is what helped him get to where he is today.
I humbly ask for you to continue those prayers so that we can see a miracle happen with my husband as well. Thank each and every one of you who sent messages and well wishes for a Happy Holiday with Chuck and know that we've been hoping for the same thing for all of you.
We are all overwhelmed at the responses from all around the world. Every faith and religion has been praying and wishing Chuck and our family the best and can't tell you just how much it means to us.
Posts
So much love to you and your family.
I'm so sorry that your family is going through this extremely difficult time. You are all in my prayers.
Praying for all of you hang in there and take it one day at a time.
Praying for you and your family! I pray the Lord would cover you in peace and strength.
"I lift my eyes to the hills -
Where does my help come from?
My help comes from the Lord,
the maker of heaven and earth"
Psalm 121:1-2
Sending prayers to all of you!
Sending lots and lots of good thoughts!!!!
I am stopping by today to let you know that I am still thinking of you and praying for your husband and your family. I pray that God is working a miracle in your life, no matter the circumtances. You are missed and you are loved.
Hugs
Ramona
Create With Joy
I haven't been over here in a while and I am so shocked to see his. I am adding you guys to my prayer list. You are a special lady and I sure hope and pray your husband is healed.
Why are some cancers described as small cell and some as large cell? What do ... Sarcoma is a cancer of the bone, cartilage, fat, muscle, blood vessels, or other ...
I am so sorry to read this! I hope and pray God gives you & your family peace and strength to live in His will, healing to His Praise, and enjoy being a family!
(I was just looking for blogs to read and came accros yours, as my son and I have SPD, too)
-Kimberly, mom to 3 boys
http://kabersblog.blogspot.com
You are ALL in my prayers. My husband also has a very rare Sarcoma Cancer in his lungs. Our Caring Bridge site is
http://www.caringbridge.org/visit/timledford
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