Since I haven't updated here since Jen's visit to Mayo I thought I would do so for those wondering how it went.
It went well! She is now a patient of Mayo and will go every three months for an MRI. We found out some troubling things, though, about what her previous surgeon had told us and what is actually true. Without going into too much detail let's just say that he wasn't completely honest when he said he was able to remove (debulk) half of the tumor. It seems he took out about enough to biopsy and, according to Mayo, didn't even send them enough to get a complete diagnosis from. They are pretty sure that it is pilocytic astrocytoma but her new neurosurgeon will not say for sure because of the lack of biopsy material. What I can't figure out is...how can that man walk out of cutting my daughter open and look her father and I in the eyes and say that he was able to get half of that tumor out when, in fact, he only took a small biopsy? You can't know how disheartening this was to Jen and I. Her new team at Mayo is convinced that they could have removed most (if not all) of the tumor had she been to them first. But since she's had the surgery already and radiation there is too much damage to her spinal cord to do anything further. It's just hard for us to fathom why he would say he did more than he did. The only thing I can think of (purely speculation on my part) is that his arrogance got in the way. This was the first tumor of this type that he had ever seen. Did he get in there and fool around (maybe mess something up) just to boast that he had finally worked on this type of tumor? The one thing that I keep coming back to is his insistence on her NOT getting a second opinion. Yup...he told her he'd rather she not seek a second opinion because he was afraid someone else would think they could do more and mess her up. Does that make sense??
Well...Jen has moved past that disappointment and is happy with her new team at Mayo. Her pain is getting worse and spreading up the leg but her new doctor said that that was to be expected. He told us more about her condition in 10 minutes than her previous doctor did in five visits.
The long and short of it is this-she will continue to be monitored every three months. If the tumor grows then they will have to go back in or she will be paralyzed...no questions about that, it's a fact. If she chooses to do nothing more she will be paralyzed...that, too, is a fact.
The one bit of good news that we did get is that what she is experiencing now could go away...poof...instantly! What a blessing that would be! Her doctor told her that he's pretty sure that the radiation caused the damage that is causing some of the pain she's in now. Once the nerves begin to heal she may find some comfort. Of course, the tumor is huge and is also pressing on the nerves so any relief may be short lived but she will take what she can get.
So, we are off to Mayo again in July. Jen is facing the new copays for the new year now and is so blessed that she was able to pay off those from her surgery thanks to your help and generosity. She's working from the office about 6 hours a day and does the rest from home. I love sitting and watching her work..she amazes me with what she knows and how well she does her job. She is going to try to work some eight hour days from the office to see how it goes but I have my doubts. When she gets struck with a bad pain (it feels like acid under the skin) it literally stops her in her tracks. If she thought she wouldn't upset me with it I'm sure she would scream from that pain. It tears my heart out and it's happening with more frequency. But..whatever she decides I will be right where she needs me to be when she needs me.
I hope you all are doing well and that God is blessing your lives with love and laughter.
Will update again when I have any news...:)
Just blown away by the generosity of people. You know...this whole ordeal with Jen has been such an eye opener in so many aspects. I've witnessed my daughter find strength I never knew she had...I've found strength I never knew I had! I've witnessed the love, support, and generous hearts of so many people. I just don't know how to thank you all. I know that God will bless your lives but for what it's worth...thank you all...from my heart, thank you....:)
I know I said that I was closing this page but I decided to wait until after Jen got word on whether or not Mayo Clinic would take her for a second opinion. She got word today and is scheduled to visit there on the 15th and 16 of this month. She had her MRI two days ago and it showed that the tumor has grown since surgery. Her surgeon also believes that she is suffering from spinal cord toxicity due to the radiation. This would explain her increased pain and numbness. The problem with toxicity is that there is nothing to be done about it. Once the damage is done there is no turning back. This also means that Jen could literally wake up any given day and be paralyzed. She says that if that happens she's okay with it because she still isn't fighting for her life (amazing, isn't she?).
Today I am asking for help to get her to and from Mayo. Your previous donations have helped ease the burden of her co-pays so much and we thank you for that. Jen is trying very hard to manage her money but with so many trips to Des Moines for her appointments and with me taking her to work and picking her up (in her car) she is continuously putting gas in her car. It's draining her bank reserve quickly. So...any help you can provide will be highly appreciated. You all have been so wonderful with your thoughts, kind words, and support. God bless you...:)
This will be my final update on Jen from this gofundme page. I thank you all for sharing our journey with us.
Jen went back to work last Monday. She's getting back into the swing of things there and told me she's so happy to be back among her friends. She loves her job and knowing the folks she works with and for I can understand why.
She is trying a TENS unit with the hope that it will alleviate some of her pain. This is the first day and we are encouraged so far. It seems to be helping with the nerve pain in her foot which is what is making walking so difficult. Fingers crossed that it continues to work!
She still has such a long way to go but isn't too concerned with the future. Jen lives her life one day at a time and relishes every minute. We both know that whatever lay ahead we will face it, conquer it, and move on. She is amazing...as are all of my children...and I am proud to be their mother. I can still picture each one as a baby and I never realized then what wonderful adults they would become. I suppose their father and I did a few things right. Either that or they are just so darn smart they figured it out on their own. Either way, I am truly blessed and honored to be their mom.
Thank you all for your prayers for my sister who underwent surgery yesterday. She is doing well and the doctors assure us that they were able to get all of the tumor. This was such an aggressive cancer that in just one week it progressed from her pancreas to a portion of her small intestine. I'm telling you, folks, it is a miracle that it was caught when it was. Praise God for that!
I don't have the words to express my gratitude for all of your support, prayers, and wonderful gifts during this time with Jen. We never felt that we were alone in this. What a wonderful gift that feeling is. I thank you all from my heart.
I'm sure God will bless each of you in your lives as He has done so in mine.
Thanks so much,
Today is the last day of radiation for Jen! We are excited to put this part of her journey behind us. This doesn't mean that she's healed because that is going to take more time but it does mean that we can get back to some kind of normalcy without the daily trips to the hospital.
What does the future hold for Jen? That's hard to say. There are so many variables. She could actually end up paralyzed either because of the tumor or because of the radiation. If the tumor begins to grow again then it's back to the drawing board. We just don't know. But, here's the thing...she's okay with whatever comes from the future as long as she isn't left fighting for her life. It's that simple.
She starts back to work on Monday so keep her in your prayers that she can get back to that routine without any complications. I have to take a moment here and thank her employers for all of their help during Jen's time off of work. These people are amazing and I don't have the words to tell them how much they are appreciated. I do know that God will reward them for being the kind, generous people that they are.
I ask that you all keep my sister, Jacqui, in your prayers. She was diagnosed with pancreatic cancer a couple of weeks ago and undergoes surgery on the 7th. We are blessed that the cancer was caught so early. Her surgeon actually asked her if she believed in divine intervention because they never catch this cancer at this stage. How blessed are we?
I will close this page in a week or two with one last update on Jen. You all can't know what your support and prayers have meant to all of us. God bless you all :)
It's been a while since I've updated and I apologize for that. It's been a very emotional time for me the past week. But, we are nearing the end of Jen's radiation...only 7 more to go! I am praying so hard that along with the end of radiation she begins to feel some relief from the pain.
She trying so hard to get stronger and more mobile in spite of the pain I know it causes. The doctors are pretty sure shes suffering from a sensitivity to the radiation. It's like this- she had the surgery to remove part of the tumor and then started the radiation so her nerves have really not had time to recover (Plus she still has half of that tumor pressing on her nerves). Add to that the inflammation from both procedures and her poor spine is just crying out. If she moves the wrong way she gets a shock through her back and leg that sends her into tears. It's very discouraging but she's determined to push though it and get up and back to work and to taking care of Aiden.
So...long story short...shes getting there...slowly but surely.
I hope you all enjoyed the wonderful weather today. I'm not even going to talk about what they say is coming Thursday because I don't want to believe it ;)
God bless you all...:)
Jen is half way through her radiation treatments! The doctor said that she should begin to feel some relief from her pain soon and I can only pray he's right. She's beginning to get discouraged and that's the last thing I want for her. A healthy mind helps so much in the healing process so we have to keep her in a good place. She's trying so hard to remain optimistic. We have got to get her back on her feet and soon! Her very livelihood depends on it! So, what I ask from all of you today is your continued prayers. I know the miracles that God can preform because He has proven this to me many, many times.
Please pray that Jen heals quickly and gets back on her feet so that she can get on with her life and fulfill her obligations.
I hope you all have a wonderful and safe weekend!!!
Just a quick update for those that are wondering how Jen is doing. We are in week three of radiation and she is still experiencing nerve pain to the point of tears. I pray it's just the treatments and not something that is going to last. She deserves some relief.
Please be careful during the coming snow storm and stay warm...God bless you all...:)
Week 2 of radiation. Jen has been sick most of the weekend. I'm not sure if it's because of the stomach bug going around or the radiation. Guess it doesn't really matter except that I know a stomach bug will pass.
She spent most of the weekend in a lot of pain. Sure wish she could find some relief that lasts for more than a day or two. But, she's a trooper and not letting on that it's getting to her although I know better.
Here's to hoping that this week proves better for her. And I hope you all have a wonderful week and that you are staying warm.
Radiation day 4 today. Jen is in a lot of pain right now. I think it's because she's been very active this week with the trips to the oncologist and her meeting with her physical therapist yesterday. Just too much activity on muscles that haven't been used in a while. Hoping this passes the more she gets around.
She hasn't had any side effects from the radiation that we notice. She did get a bit nauseous the other night but I think we also have a stomach bug going around here so not sure what the culprit is.
She's begun to work from home a bit so I think that keeps her mind busy for a while.
Wanting her up and getting around by her birthday, March 5, so keep those prayers coming!
We hope you all have a wonderful weekend...and..think Spring!!
We have reached our goal here on gofundme and are so blessed that all of you gave to help ease Jen's burden. God bless you all!!
Day 2 of radiation for Jen. She's doing so much better! Keep those prayers and positive thoughts coming!!
Jen has her first radiation treatment tomorrow at 2:00. Please keep her in your prayers. I am praying that she doesn't suffer any side effects or, if she does, that they are mild.
After the increase in her nerve medicine she seems to be seeing a difference with the nerve pain. The problem is, though, that at this higher dosage she's getting dizzy. So...when I came home I made her come with me...:)
I hope everyone has a wonderful week!!
Jen is slowing doing better. It's really an uphill battle for her. One day she's doing great and the next day she's back down again. She saw her doctor today and we are encouraged because the strength in her legs is good. Just need to get her past the nerve pain and the shaking while on her feet so that she can get back up and running (or walking, we'll take either).
Still haven't heard when she's to start radiation but hoping to hear before the week is out. We are in the process of collecting a family history so that she can have genetic testing. We are convinced that this is genetic and even pretty much know what side of the family it comes down from (I knew it was all my fault ;)
Jen is attempting to do some work from home but the trouble is that she can't sit upright for very long so it's slow going. But she is strong and determined and with the Lord's help she will get to where she was before the surgery.
Please continue to keep her in your prayers..
I hope this message finds you all happy and well.
God bless you all...:)
Jen's trip to the oncologist yesterday went well once we got her car started (thank you, Greg Carpenter for coming out in the cold to help us!).
We were able to find out a little more information on the type of tumor she has; that it is mostly seen in children but in their brains. When it is in the brain there is more success in removing all of it than when it appears in the spinal cord like Jens. Once the tumor is removed (all of it) then the treatment is more of a wait and watch. But because Jen still has half of her tumor so she will begin radiation treatments as soon as her surgeon clears her for this. The type of tumor she has is notorious for becoming aggressive and malignant if left untreated.
She will have between 25-28 sessions, one a day, for about five weeks. The dose is low so it has to be spread out over time. The spinal cord is very sensitive (as you can imagine) and can not take aggressive treatment.
We are hopeful that with such a low dose each time that the side affects will be minimal such as redness of the radiation site, nausea, and such.
She will also be seeing a rehabilitation specialist to form a plan as to her mobility and physical therapy to get her legs working properly again.
So, we know the path she is to take and are geared up to get her on it and through it so that she can begin to enjoy life again.
We are dreading the drive each day to and from Des Moines for her treatment not because of the bother but because of the expense so thank you all again for your donations that will help ease that burden.
Got Jen moved back to her house today. She's been with us since Christmas eve. Her bed must feel good because she's been out for a while now. I'm sure she'll appreciate the quiet!
She goes to see her oncologist on Monday to determine when/if she will need radiation. Then it's off to physical therapy on Tuesday to see if we can get her back on her feet.
Huge thanks to her boss, Nyle, for sending home a wheelchair for her to use. She was able to get through 2 stores today and get all stocked up before the big freeze sets in tomorrow.
I am spending the night with her to see if my going home at night will work. I still have my doubts but she is insisting I sleep in my own bed. We will see.
Have a great rest of the evening and a wonderful Sunday...and do try to stay warm!
Here's to the new year and new beginnings!
Jen is feeling better today so fingers crossed that it continues.
She starts physical therapy this coming Thursday. We are hoping for some relief from the pain and more mobility. I know Jen has a rough road ahead of her but am certain she will get through it.
I want to thank you all again for your donations, support, and prayers. I was going to close this page at the end of this week but, because of numerous requests from those that want to follow her journey, have decided to keep it open to share Jen's progress. Once we reach the $2000 goal we will not be asking for more donations, though.
We hope you all enjoy your New Year's Eve and are certain that you will be careful while drinking...I'm sure I don't have to tell you not to drink and drive ;)
Blessing to you all..:)
Jen is doing better today. She has made the decision to take each little accomplishment as a good thing and to stop worrying about what she can't yet do. She has helped her son, Aiden, with some of his Christmas gifts and has played games with him. Considering the amount of pain such activity leaves her in I think she's making great strides in her recovery!
As I have said before, Jen is my inspiration and I know that through her positive outlook she will get through this and come out the other end a better, stronger person.
Thank you all so much for your continued prayers, donations, and support. Jen's new journey is just beginning but I know that it will be alright because God is with us and will lend us the strength to endure.
We hope everyone enjoyed their Christmas and that the new year brings with it all that you need for a happy life.
As you can all see we are very close to our $2000 goal. I will let this run about another week and then take it down. Jen's bills are beginning to roll in and this is such a God send! Thank you all so much for your donations to help ease Jen's burden.
She's not been doing so good these past couple of days. I think she was expecting to be up and around by now but I knew better. You can't have your spine cut into, bone removed, and half of a tumor cut out and expect all to be healed in a matter of weeks.
This depresses Jen. She feels like she needs to begin working from home to pay back the many kindnesses her employer has given her (Nyle and Sue with Cycle Force Group in Ames). But in order to do so she needs a clear mind and to be able to sit up for more than a few seconds at a time.
Please continue to hold Jen in your prayers. I hope her spirits lift soon because I know that's crucial to the healing process.
God be with you all....:)
Well, here we are a day away from Christmas and I think we finally have everything in place.
I never realized just how much Jen does to help this time of the year until I had to take over for her. I must remember to appreciate her more next Christmas!
She's still in a good deal of pain. She was ordered by the doc to stay put this weekend and not get up and down. This, of course, irritates her and depresses her more than she already is. But it's for her own good and, with God's help, we will get her to the point where she can move without crying out in pain.
Please continue to hold her in your prayers. I know that a miracle happened for us when the tumor was diagnosed as benign...and I have all of you to thank for that. God truly does hear our prayers.
Merry Christmas to all of you from all of us!!
Well...today I can truthfully say that Jen is on the mend! Having the pathology come back benign changes our outlook on everything.
Even though she will have to go through many things for the rest of her life because of the diagnosis none of them are the worst case scenario. She will have to have MRIs every three months for several years until the doctors can determine the rate of regrowth. If the tumor does begin to grow again and threatens her mobility she will undergo radiation (or possible surgery again). She still faces the threat of paralysis but only if the tumor regrows at such a rate that it can not be controlled.
But...even with all of this hanging over her head we are so very blessed to have received this diagnosis. I am convinced that your prayers and positive thoughts helped with the outcome. To simply say thank you is not enough...but, unless I can hug you all, that's all I have. So, from the bottom of my heart I thank each and every one of you. May your lives be as blessed as ours is.
Praise God it's benign!! Jen's diagnosis is pilocytic astrocytoma. These type of tumors are prone to regrowth, so she will have to be monitored closely for the rest of her life. MRIs every 3 months. She is being referred to a neurological oncologist who will also closely monitor her. If it grows more then she will most likely have radiation... But its not cancer!!
Thank you all for your prayers!! I am positive God heard you all!!
Off to the doc we go today to get Jen's staples out and, hopefully, get the pathology report. I am remaining optimistic and know that whatever God has planned for Jen she will take it head on and come out the other side a winner.
I ask that you continue to pray for her and, as always, we are so appreciative of your support.
We hope everyone had a nice weekend! Jen's was good...and not so good.
She starts feeling better...is getting some relief from the pain...and then she pushes it just a tad too far and is back down again.
She's been very emotional today but that's to be expected. I know she appreciates all of the kind words, prayers, donations, and gifts from those that have taken the time to stop by.
She had a treat this evening when some carolers stopped by the house and sang for her. Brought tears to her eyes. Thank you to those that participated for that gift.
Please continue to keep her in your prayers this week as we await the biopsy report. She sees her doctor on Wednesday.
We hope you all have a great week....:)
Jen is doing good today. She is able to get enough relief from her pain to get some rest thanks to the steroids. She's keeping her spirits up and is enjoying the cards people have sent her. We are trying to cover her wall and it's coming along nicely.
We are going to be lazy today and watch Christmas movies and just hang out.
We hope you all have a blessed day and thanks so much for your support. You don't know what it means to us.
God bless you all...:)
Jen FINALLY got some relief and sleep last night! The doctor prescribed her a strong steroid to help reduce the swelling and, in turn, help with the nerve pain. Thank God it worked!
We hope you all have a wonderful weekend! Please continue to keep Jen in your prayers.
Jen is still in a great deal of pain today. She's getting stabbing pain in her foot. She said it feels like a knife sticking into it. Pretty sure it's nerve pain but knowing what it is doesn't help alleviate it. The doctor is calling her in a strong steroid and I am hoping that gives her some relief.
On a lighter note..when she's not ceased up in pain she is trying to finish some Christmas shopping online. Jen never lets pain stand in the way of her Christmas..:)
I hope you all are having a great week! Remember...it's Friday eve!
Today isn't a great day for Jen. Of course, it was her first night home from the hospital and I'm sick so that makes it doubly hard on her.
Her left leg hurts so bad she's in tears. It's the swelling in the spine that's causing it and she can't take anti-inflammatory for 3 months. So we keep her in ice and pray for relief.
She did a little research on her medical insurance page and for just the MRI's she's had her co pay is over $600.00. We don't know yet what the hospital stay will add to that but are so thankful for your donations to help ease her burden.
I hope you all are having a good week. God bless you all!
Finally got to bring Jen home! She's all tucked into her bed with a smile on her face watching Christmas Vacation. She's not letting the pain she's in ruin her homecoming...:)
Please keep her in your prayers and thank you all for everything you have done to support her during this time.
Jen's doctor paid her a visit this evening. We were hoping to hear something about the pathology report but he told her that he has sent the biopsy to Mayo and won't know until sometime next week. This news, of course, sets her mind to wondering about the why of it and if there are things they aren't telling her. I try to reassure her the best I can but it's hard to ease someones mind when it comes to something like this.
We were hoping she'd get to come home tomorrow but the doctor may keep her another day or two until she is stronger.
Please continue to keep her in your prayers and thank you all so much for your support.
Jen had a restful night after a horrible evening so I am thankful for her night nurses.
She may get a preliminary pathology report today. We are praying for benign but Jen said that, whatever the outcome, she will face it head on and get through it. I have no doubts about that because she has always been a fighter.
Hoping she will be home by tomorrow afternoon.
God bless you all and Happy Monday!
Jen is finally out of ICU and into a regular room. Her doctor informed her this morning that she will be getting some rehabilitation next week to make sure her legs are working properly before she is sent home. She actually made it out of bed and into a chair today. When getting back into bed she was stubborn and wanted to do as much of it on her own as possible...and darned if she didn't do it!
We still await the diagnosis of the tumor but Jen is determined that, whatever lay ahead, she will meet it head on and deal with it and I know she will come out the other side a winner.
Thank you all for your donations and prayers.
Well, we didn't get the information we had hoped for as far as the tumor is concerned. We had hoped it was a nerve sheath tumor-just wrapped around a nerve- but, instead, it is a tumor that originates within the spinal cord. The reason the doctor couldn't remove all of it is because the part that he left was attached to the part of the spine that controls the nerves to her legs and bowels. She stood the chance of losing all feeling in those areas. Not worth the risk.
Now we wait on pathology. If it is benign it will be left as is because they are usually slow growing and will only really need attention if they cause any discomfort. If it is malignant then it's chemo and radiation.
I have to say..Jen amazes me with her outlook. She is resigned to whatever it is and bound and determined to fight. I am so proud of her. I am in awe of her and humbled by the fact that this amazing woman is my daughter.
I hope you are all well today.
Thanks for all of the messages and prayers. You can't know what that support means to all of us.
I am just blown away at the response and the amount of donations. There are no words that can express my gratitude. My heart is full today. Thank you all so much!
I could see in Jen's eyes this morning when she dropped Aiden off that her fear level is rising. I can only look at what happening to her through a mother's eyes...that's rough enough for me. But she is the one facing the unknown and even though she is strong and determined I can tell...I can see...it's in her eyes.
Please continue to pray for her...and ask our Father to send her the strength she will need to win this battle.
I sit here this morning with tears running down my face at the amount that has been donated so far.
I know that when I hand my troubles over to God...that when I lay them at His feet and trust in Him He will take care of us. This is proof of His glory...Jen is so blessed...:)
Thank you all so much! I just don't have the words to tell you how much it means.
I want to add that I'm not expecting to get close to the amount I put on this page. But every little bit will help Jen and we will worry about the rest when the time comes...:) Thanks again.
Jen is a loving, single mother that works full-time and has managed to buy her own home and make a wonderful life for her son and herself. She inspires me daily with her positive outlook on life...even when life is kicking her in the rear. She always tries to find the positive in every situation and learns from everything that God sends her way...even the bad. She has faced thyroid cancer, a hysterectomy, and shoulder surgery. She now has another battle to face and I know she will win this one, as well.
Jen is having surgery for a spinal tumor. We won't know whether the tumor is benign or not until it is out and biopsied. Jennifer didn't want any help while she was laid up after surgery because she said she really won't need it...that is until she found out her co-pay will be over $1800.00 (this is just for the surgery and hospital stay. If there are complications then the co-pay will go up). I, as her mother, can't sit by and watch her worry about such a huge bill without trying my best to get her some help.
That's where you come in, my friends. If you can help that will be such a huge blessing to us. If you can't then your prayers are also a huge blessing to us.
Please, do not give what you do not have!
Thank you so much