Wesley's Medical Journey Fund
Donation protected
It took me some time to come to terms with creating one of these, but it has become very real that we need to reach out for a little help. If you take the time to read about Wes's situation, please accept our total gratitude.
My husband, Wesley, has been diagnosed with squamous cell carcinoma (cancer) of the tongue. It has caused him a tremendous amount of pain, and is now spread through the foretongue. The onocologist has his pain under some control, gut the pain will continue for a considerable amount of time. His speech and abilty to eat solid foods are significantly impacted; he can only eat his Reliv nutritional shakes, Ensure, some yogurt, and applesause. I add ice cream to his shakes along with whole milk to increase his caloric intake. He has lost over 30 pounds in the last 6 weeks and he needs to get stronger for his surgery and recouperation. According to his surgeon he will undergo months - possibly more - of speech and occupational therapies to learn to swallow and speak again after his procedure. He will also undergo radiation. The prognosis is that his speech and ability to eat solid foods like meats and even salad will forever be impacted. The reconstructed foretongue will not have the muscle structure required to move the food within the mouth for the necessary chewing.
He is scheduled at the University of Michigan to have the oral part of his tongue removed (the part of the tongue you can see) and, luckily, will be reconstructed using tissue from his abdomen. It is a miracle what they can do. The surgery will take 10 - 12 hours, and he will remain at U of M for 2-3 weeks. As it stands now, he will be able to keep the portion of the tongue that descends into the throat - this is good news as that part of the tongue contains the muscles needed for swallowing. However, the surgeon has informed us that once he is in surgery this can change. They will also be removing the lymph nodes in his neck. This type of cancer is aggressive and will attack there first. His PET scan thus far indicates that it has not moved anywhere else at this time. He will be on a trach and feeding tube for weeks following the surgery - even when he comes home. He will not be able to speak at all during that time.
Those of you who know Wes know that he is a very social person who loves to tell stories and spend time with his many friends and family. He has now completly withdrawn and visit requests he denies - with few exceptions. He always looked forward to talking on the phone with his children, who live in Colorado, and now that he realizes he can no longer be able to continue those calls has him quite depressed. He is very hard to understand and becomes quite agitated when he cannot be understood. His loss of speech and knowing that his communication will be impacted indefinitely will require a communication device. Our son, who cognitively impaired, has Autism, and is non-verbal, uses an iPad with a special "touch to talk program" so he can effectively communicate. We believe this is what Wes will need as well. The licensing for the program we already have. It will only operate on the iPad platform, so we need to purchase one for Wes. I have heard of a device for the phone that will allow him to type to talk. I do not have information on it as of yet, but I am sure they are not cheap.
The next four to five months will involve numerous trips (many will be overnight for a couple of days at a time from Alpena to Ann Arbor. Cam has school and I HAVE to work, so we will be there three days for his surgery, the weekends, and then when U of M wants us down for two days prior to release for home-care training. It is 4 hours each way. Not only will we have travel, lodging, and living expenses, but we will have to - on occasion - hire a sitter to join us to help with our son, Cameron. Each trip will require me to go through some nursing training for his care at home. Cameron would be completely unable to allow me the time and concentration needed for such training - someone will have to be hired to assist me during those times. Once Wes has stablized and the tubes removed we will still be required the Ann Arbor trips bi-monthly (at a minimum) for up to a year. The surgeon has informed us that there could also be a point where additional surgery or surgeries may be required. UnfortunateIy, the local U of M Cancer Center in Alpena is not able to perform the special care he will need with this type of cancer. I am currently the only bread-winner, so lost wages will also be an issue. I thank God that I have such an understanding boss (and friend) at my employment.
As Wes's ability to swallow will forever be impacted, he will need a bed that can be raised as needed. We have found a bed that is split so that husband and wife can sleep "together". As night time choking is predicted, I want to be right there for him - not in another room.
I am currently seeking a care provider that can assist with Wes's care as he recoups at home. Wes was always home in time to get Cameron off the bus until I could get home from work. At 14 years of age, Cameron still needs constant supervision and assistance.Not only do I need a care provider that will care for Wes, but the care provider will also have to make sure Cameron is watched after school. Cameron can be a handful, so the person we need will have to perform double duty. This is not a cheap undertaking. Insurance will only cover a portion, and only for so long.
Wes is on Medicaid, so while some expenses will be covered, certainly not all will. I have been told that there will also be those expenses arising that we aren't even aware of yet from families who have traveled or are traveling the same path.
The pain Wes was experiencing has left him unable to work since June - he was our major bread earner and as a builder/concrete finisher his work season only lasts in Michigan from May - June through October - November. The onocologist feels strongly that he will not be able to work the 2016 season as well. The stress alone from the ever growing stack of bills weighs heavily on both of us.
We have had the support and kindness of friends and family, but we have to look further at this point. Our local cancer support group, Friends Together, has been so much help, but as a non-profit, they are limited to just how much financial help they can provide. Other agencies have helped as well, but they are also limited.
We appreciate any help. Thank you all so much.
With much love,
Joy
My husband, Wesley, has been diagnosed with squamous cell carcinoma (cancer) of the tongue. It has caused him a tremendous amount of pain, and is now spread through the foretongue. The onocologist has his pain under some control, gut the pain will continue for a considerable amount of time. His speech and abilty to eat solid foods are significantly impacted; he can only eat his Reliv nutritional shakes, Ensure, some yogurt, and applesause. I add ice cream to his shakes along with whole milk to increase his caloric intake. He has lost over 30 pounds in the last 6 weeks and he needs to get stronger for his surgery and recouperation. According to his surgeon he will undergo months - possibly more - of speech and occupational therapies to learn to swallow and speak again after his procedure. He will also undergo radiation. The prognosis is that his speech and ability to eat solid foods like meats and even salad will forever be impacted. The reconstructed foretongue will not have the muscle structure required to move the food within the mouth for the necessary chewing.
He is scheduled at the University of Michigan to have the oral part of his tongue removed (the part of the tongue you can see) and, luckily, will be reconstructed using tissue from his abdomen. It is a miracle what they can do. The surgery will take 10 - 12 hours, and he will remain at U of M for 2-3 weeks. As it stands now, he will be able to keep the portion of the tongue that descends into the throat - this is good news as that part of the tongue contains the muscles needed for swallowing. However, the surgeon has informed us that once he is in surgery this can change. They will also be removing the lymph nodes in his neck. This type of cancer is aggressive and will attack there first. His PET scan thus far indicates that it has not moved anywhere else at this time. He will be on a trach and feeding tube for weeks following the surgery - even when he comes home. He will not be able to speak at all during that time.
Those of you who know Wes know that he is a very social person who loves to tell stories and spend time with his many friends and family. He has now completly withdrawn and visit requests he denies - with few exceptions. He always looked forward to talking on the phone with his children, who live in Colorado, and now that he realizes he can no longer be able to continue those calls has him quite depressed. He is very hard to understand and becomes quite agitated when he cannot be understood. His loss of speech and knowing that his communication will be impacted indefinitely will require a communication device. Our son, who cognitively impaired, has Autism, and is non-verbal, uses an iPad with a special "touch to talk program" so he can effectively communicate. We believe this is what Wes will need as well. The licensing for the program we already have. It will only operate on the iPad platform, so we need to purchase one for Wes. I have heard of a device for the phone that will allow him to type to talk. I do not have information on it as of yet, but I am sure they are not cheap.
The next four to five months will involve numerous trips (many will be overnight for a couple of days at a time from Alpena to Ann Arbor. Cam has school and I HAVE to work, so we will be there three days for his surgery, the weekends, and then when U of M wants us down for two days prior to release for home-care training. It is 4 hours each way. Not only will we have travel, lodging, and living expenses, but we will have to - on occasion - hire a sitter to join us to help with our son, Cameron. Each trip will require me to go through some nursing training for his care at home. Cameron would be completely unable to allow me the time and concentration needed for such training - someone will have to be hired to assist me during those times. Once Wes has stablized and the tubes removed we will still be required the Ann Arbor trips bi-monthly (at a minimum) for up to a year. The surgeon has informed us that there could also be a point where additional surgery or surgeries may be required. UnfortunateIy, the local U of M Cancer Center in Alpena is not able to perform the special care he will need with this type of cancer. I am currently the only bread-winner, so lost wages will also be an issue. I thank God that I have such an understanding boss (and friend) at my employment.
As Wes's ability to swallow will forever be impacted, he will need a bed that can be raised as needed. We have found a bed that is split so that husband and wife can sleep "together". As night time choking is predicted, I want to be right there for him - not in another room.
I am currently seeking a care provider that can assist with Wes's care as he recoups at home. Wes was always home in time to get Cameron off the bus until I could get home from work. At 14 years of age, Cameron still needs constant supervision and assistance.Not only do I need a care provider that will care for Wes, but the care provider will also have to make sure Cameron is watched after school. Cameron can be a handful, so the person we need will have to perform double duty. This is not a cheap undertaking. Insurance will only cover a portion, and only for so long.
Wes is on Medicaid, so while some expenses will be covered, certainly not all will. I have been told that there will also be those expenses arising that we aren't even aware of yet from families who have traveled or are traveling the same path.
The pain Wes was experiencing has left him unable to work since June - he was our major bread earner and as a builder/concrete finisher his work season only lasts in Michigan from May - June through October - November. The onocologist feels strongly that he will not be able to work the 2016 season as well. The stress alone from the ever growing stack of bills weighs heavily on both of us.
We have had the support and kindness of friends and family, but we have to look further at this point. Our local cancer support group, Friends Together, has been so much help, but as a non-profit, they are limited to just how much financial help they can provide. Other agencies have helped as well, but they are also limited.
We appreciate any help. Thank you all so much.
With much love,
Joy
Organizer
Joy Rockett
Organizer
Alpena, MI